tag:blogger.com,1999:blog-36937473452323947112024-03-13T21:43:31.606-07:00Life UnscriptedLife Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.comBlogger202125tag:blogger.com,1999:blog-3693747345232394711.post-23808743304491904252021-06-10T18:36:00.005-07:002021-06-10T18:37:06.693-07:00Bionic Girl is Back<p> Lily's surgery was a10 hour long event, that kept us on the edge of our seats, along with the next 24 hours afterwards. We were taken down to pre-op at 7:30, as she was slotted for an 8 am surgery. She did good until they came to take her, then she looked at us and started crying and said, " I want to go home." She repeated that several times, until Child Life came in, and helped her find somethings, to take her mind off of what was about to happen. Child Life truly never gets recognized for the work they do, how great they are with the kids, and how much us parents appreciate them. </p><p>After she was taken to the O.R, I'm not even going to lie, I went back to the Ronald McDonald House (RMH) and crashed. We got the call that she was off of bypass and was being closed up, that she would be up to her room in about an hour or hour and a half, this was around the 8 hour mark. So we made out way back over to the hospital, so we would be there to meet her surgeon. Well that hour and a half mark came and passed, so I went to check on her status. She was still in procedure, they said they were having problems trying to get her bleeding too stop. 30 mins later, we were shown to a conference room, so we could meet with her surgeon.`</p><div class="separator" style="clear: both; text-align: justify;"><a href="https://1.bp.blogspot.com/-tnFhsIkmADk/YMKOLj7gHZI/AAAAAAAAQjo/iFNKOzC-uykreWDI2gNhGdpSW-t9u6j4QCLcBGAsYHQ/s450/david-procedure-img-1.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="276" data-original-width="450" height="191" src="https://1.bp.blogspot.com/-tnFhsIkmADk/YMKOLj7gHZI/AAAAAAAAQjo/iFNKOzC-uykreWDI2gNhGdpSW-t9u6j4QCLcBGAsYHQ/w312-h191/david-procedure-img-1.jpg" width="312" /></a><a href="https://1.bp.blogspot.com/-niYKZ18UMYw/YMKOLnlQjOI/AAAAAAAAQjs/9mQ_usL2sHsEJJoAmOI_0Xk2pBhJRiNDgCLcBGAsYHQ/s270/david-procedure-img-2.jpg" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="240" data-original-width="270" height="240" src="https://1.bp.blogspot.com/-niYKZ18UMYw/YMKOLnlQjOI/AAAAAAAAQjs/9mQ_usL2sHsEJJoAmOI_0Xk2pBhJRiNDgCLcBGAsYHQ/w270-h240/david-procedure-img-2.jpg" width="270" /></a></div><div class="separator" style="clear: both; text-align: justify;">The above photos show the David procedure, which is what we anticipated to have done, what we were truly hoping could be done. It would have saved the pulmonary valve, that was in that aortic position, but it wasn't the valve leaking at any of the suture lines. Instead, it was the leaflets opening, but not closing completely, so we were almost back to the beginning of her ORINGINAL aortic valve. For those who have just started following, Lily was born with an aortic valve, that only have two leaflets, instead of the three that you are suppose too, so when it opened and closed, the back flow was just as bad as what we were experiencing before this surgery. It was like someone went in and blew up a balloon and stretched it out a little bit, at that point in time, it was no longer savable, so the only left to do, was to put a mechanical valve back in.<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-kcsG-N8T_WI/YMK9oHRJsMI/AAAAAAAAB44/PuCjLTk9UKwH2n8azO00grWOZMsNMJ4jwCLcBGAsYHQ/s960/sd30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="294" src="https://1.bp.blogspot.com/-kcsG-N8T_WI/YMK9oHRJsMI/AAAAAAAAB44/PuCjLTk9UKwH2n8azO00grWOZMsNMJ4jwCLcBGAsYHQ/w215-h294/sd30.jpg" width="215" /></a><a href="https://1.bp.blogspot.com/-PGr542vsdgo/YMK9ln3FVUI/AAAAAAAAB40/dOz0cKTFEl4Sv1eNYI1Hl_rkjaixNLRIACLcBGAsYHQ/s960/sd31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="296" src="https://1.bp.blogspot.com/-PGr542vsdgo/YMK9ln3FVUI/AAAAAAAAB40/dOz0cKTFEl4Sv1eNYI1Hl_rkjaixNLRIACLcBGAsYHQ/w215-h296/sd31.jpg" width="215" /></a></div><br /><br /><br />I wish I didn't have too tell her. I wish I didn't have to see her face so angry and so sad at the same time. I really wish we never did the other procedure. Yet with all the wishes in the world, you can't fix everything, even though that's all you really want. <br /><br />While putting a 24mm On-X valve in, the pulmonary valve, that had been placed at her 6th surgery, had to be replaced also. A 17mm valve was placed on that side and "Should" last for a while. I chuckle at the word 'should' anymore. I throw that word away, when they say it, because it doesn't pertain to Lily, her heart has always done what it has wanted too, when it has wanted too. So when I was told the On-X</div><div class="separator" style="clear: both; text-align: justify;">should last the rest of her life, I heard; The On-X will last, until Lily's heart decides it's done with it. We'll keep an eye on it and let you know when things go south. It sounds so negative, yet, for those who have followed Lily from the beginning, or know her history, KNOW, what I say is the truth. Lily came back upstairs with one chest tube, which surprised me, seeing I mentioned it several times, that if one wasn't put in on the right side, her lung would partially collapse. So after being upstairs 20 hours, they finally decided a secondary chest tube, would help. Thankfully they did it bedside. She was sedated but did not need to be intubated again. Her right, middle lobe, collapsed. Between 4:30-6:30pm, she dumped 550ml out of that tube. All I keep thinking is, if they would have just listened to me, we could have possibly avoided that all to begin with. You win some and you lose some, well in this sense, we lost, and then we won. All that matters is that it finally came out.<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ietNaI82XDM/YMK6XcJdx-I/AAAAAAAAQkU/NzUsth53sIA7FL-bSHqE8ggL5GJPNUyDwCLcBGAsYHQ/s2048/sd14.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-ietNaI82XDM/YMK6XcJdx-I/AAAAAAAAQkU/NzUsth53sIA7FL-bSHqE8ggL5GJPNUyDwCLcBGAsYHQ/s320/sd14.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TZ-TokFzvkk/YMKnLSmbQdI/AAAAAAAAQkE/iBDbHrH_dz4EX3vtRtmjnYcf0vVsSw4BwCLcBGAsYHQ/s1990/sd18.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1116" data-original-width="1990" height="240" src="https://1.bp.blogspot.com/-TZ-TokFzvkk/YMKnLSmbQdI/AAAAAAAAQkE/iBDbHrH_dz4EX3vtRtmjnYcf0vVsSw4BwCLcBGAsYHQ/w284-h240/sd18.jpg" width="284" /></a><a href="https://1.bp.blogspot.com/-iTHkdxsXlMs/YMKm4iTcGtI/AAAAAAAAQj8/KpFUWwonnwccr6Mp0dSgAl-LueK1HyZ0wCLcBGAsYHQ/s2048/sd29.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="240" src="https://1.bp.blogspot.com/-iTHkdxsXlMs/YMKm4iTcGtI/AAAAAAAAQj8/KpFUWwonnwccr6Mp0dSgAl-LueK1HyZ0wCLcBGAsYHQ/w195-h240/sd29.jpg" width="195" /></a></div><br /></div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;">So Lily is not only on aspirin now but also back on coumadin. We need to get back to having test strips and lances at home for her. No bounce houses, trampolines, etc. We are back to life before the 6th surgery, and I am trying to let it all sink in, and not be angry myself, yet I am having a hard time. I am now questioning myself, when I question myself. Do I make the right decisions anymore? To do a surgery, only to ruin a perfectly good valve, and now have 2 problems, I have to stop and look at everything now. Will this fix be a permanent solution for the long run? There is no straight paths when it comes to cardiac kids and with Lily and her complex heart, it is more like a corn maze 2.0.</div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;">Yes, I just compared my kids heart to a corn maze. I think I have been married to a Nebraska man for too long, and all the corn, and Cornhuskers, just took over my head for a second.</div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;">Now this was just the blog post to bring everyone up to speed with her surgical ventures. I am on duty tonight, so I will make sure to get another one out, as we still so much else going on, and it would make this entry way too long for anyone to want to sit and read.</div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;">-J<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-EcVjfx045I0/YMK6Ers2K1I/AAAAAAAAQkM/YYnEUdepBVYErV5VzY4GfF_TEXdO1drsgCLcBGAsYHQ/s2048/sd17.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-EcVjfx045I0/YMK6Ers2K1I/AAAAAAAAQkM/YYnEUdepBVYErV5VzY4GfF_TEXdO1drsgCLcBGAsYHQ/s320/sd17.jpg" /></a></div><br /> </div><br /><p><br /></p>Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-34809875572622203662021-06-04T20:04:00.005-07:002021-06-04T20:07:13.445-07:00A Little Lost but Always Found<p></p><div class="separator" style="clear: both; text-align: center;">So last night as I typed the update onto Facebook, I knew it should have been on here because of how lengthy it was. So today here we are. The first picture right below is of Lily, Facetiming her sister, who is currently in Nebraska. These two share secrets with each other, share a bed, and are thick as thieves together, they are truly missing one another right now. I have never been more glad that we live in a time where things like this are possible, so the separation is more barrable. Our whole family is divided right now and the strain is felt by all. What I'd give to have all the kids here, especially my husband, and my father, when she comes out of surgery. You never truly understand how much weight is on your shoulders, until they come out and tell you the surgery went well or not. That's when I walk outside and cry because I've held it in for so long.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ZIy5muZJK2o/YLrhPzk5OlI/AAAAAAAAB4I/We4pAYhczHEWz1Hk2zdkvr4d4UY0ORa-QCLcBGAsYHQ/s2048/sd03.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-ZIy5muZJK2o/YLrhPzk5OlI/AAAAAAAAB4I/We4pAYhczHEWz1Hk2zdkvr4d4UY0ORa-QCLcBGAsYHQ/s320/sd03.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div style="text-align: center;">Today was a <strike>pretty rough </strike>day. Ok scratch that, it was a rough day. We were supposed to get a CT Dye contrast, so they could get better images for Mondays surgery. Let me just tell you, Lily was so brave, and she was so good, we couldn't be once again, more proud of her, for her bravery. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/--dZwbUeE2tQ/YLrhOzHJjwI/AAAAAAAAB4E/tCC2-x6FRKkmkJzVHRfs0CIfE_QWfNcJgCLcBGAsYHQ/s2048/sd05.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/--dZwbUeE2tQ/YLrhOzHJjwI/AAAAAAAAB4E/tCC2-x6FRKkmkJzVHRfs0CIfE_QWfNcJgCLcBGAsYHQ/s320/sd05.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-j-Zuj1yIznM/YLrhOasjnaI/AAAAAAAAB4A/PzM96YdguP8sG0iXGgvJ6krOLLWhWPdygCLcBGAsYHQ/s2048/sd07.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-j-Zuj1yIznM/YLrhOasjnaI/AAAAAAAAB4A/PzM96YdguP8sG0iXGgvJ6krOLLWhWPdygCLcBGAsYHQ/s320/sd07.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">She took the first IV try like a champ, on her second try, you could see it wavering, because she was getting sweaty, and you could see it in her eyes, she was slipping. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-BdrYsaNQxB0/YLrhQnP4DDI/AAAAAAAAB4M/o2n2fpkUM9YgEVn9k0ja09sztFNBCMbWACLcBGAsYHQ/s2048/sd08.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-BdrYsaNQxB0/YLrhQnP4DDI/AAAAAAAAB4M/o2n2fpkUM9YgEVn9k0ja09sztFNBCMbWACLcBGAsYHQ/s320/sd08.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">So when the second IV was a miss, she lost it. She just threw her arms down and said, "No, no, no, no. They have to do it again, no!" Tears and sweat running down her face.</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-oXOWxFT07rs/YLrhRI_UzyI/AAAAAAAAB4Q/Bh2Fj0Kwv18l-mVtXs-tITb0jJyFPbSqACLcBGAsYHQ/s2048/sd09.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-oXOWxFT07rs/YLrhRI_UzyI/AAAAAAAAB4Q/Bh2Fj0Kwv18l-mVtXs-tITb0jJyFPbSqACLcBGAsYHQ/s320/sd09.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">So when it came to the third try and the vein blew, I audibly swore. I knew I shouldn't have, but I was struggling myself, to hold it together. So the last try was the side of the wrist and that one blew too. So the nurses looked at me and told me they were going to reach out to Cardiology and see what they wanted to do. That gave Chris and I time to snuggle and settle her down.</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-2L26TV3WtWs/YLrhR4Wo1MI/AAAAAAAAB4U/FRJQYi7H91E2sov7H9w69iaxMO7XWYefgCLcBGAsYHQ/s2048/sd10.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-2L26TV3WtWs/YLrhR4Wo1MI/AAAAAAAAB4U/FRJQYi7H91E2sov7H9w69iaxMO7XWYefgCLcBGAsYHQ/s320/sd10.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-sydHst4iJoU/YLrhS-CFxtI/AAAAAAAAB4c/KaFP3GFwp8U0cW-KXfWjpTXlHDO7nK5yQCLcBGAsYHQ/s2048/sd11.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-sydHst4iJoU/YLrhS-CFxtI/AAAAAAAAB4c/KaFP3GFwp8U0cW-KXfWjpTXlHDO7nK5yQCLcBGAsYHQ/s320/sd11.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">In the end, they told me to head over to Cardiology, I called and asked if all of us needed to come, or if I could go by myself. Thankfully it was just me, I sent Chris, with Lily, back over to the house, for lunch and a rest.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Our new action plan is in plan.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Lily will be undergoing a Cath on Monday, while being under, they will do</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"> Trans-esophageal echocardiogram</div><div class="separator" style="clear: both; text-align: center;">CT Dye Contrast</div><div class="separator" style="clear: both; text-align: center;">ENT will be checking her right bronchial tube to see how narrow it really is</div><div class="separator" style="clear: both; text-align: center;">A possible balloon of her arch, depending on if the sent have moved or what's going on</div><div class="separator" style="clear: both; text-align: center;">also known as Lily being Lily.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">I feel there was more, but I can't think of anything else at this moment. Seeing tomorrow is Saturday, we will go and have her Covid swabbed again, and have the rest of this weekend free. Which at this moment in time, something we all really need.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Thank you to everyone for your kind words, messages, phone calls. I have had a few ask if we can receive things here at the Ronald McDonald House, and yes we can. You can reach out to me for the address and I will get it to you. We truly wouldn't be getting through all of this without the support of our friends, family, and our supporters. Just know, we thank you all in our thoughts and prayers daily.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">-Jenna S</div><div class="separator" style="clear: both; text-align: center;">#BelieveinLily</div><div class="separator" style="clear: both; text-align: center;"> </div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qrhenMrfSMQ/YLrhSOJiCnI/AAAAAAAAB4Y/I3FTxk1nGdotEENsJ01JulIjjbeSMTYFACLcBGAsYHQ/s2048/snapchat01.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1152" height="320" src="https://1.bp.blogspot.com/-qrhenMrfSMQ/YLrhSOJiCnI/AAAAAAAAB4Y/I3FTxk1nGdotEENsJ01JulIjjbeSMTYFACLcBGAsYHQ/s320/snapchat01.jpg" /></a></div><br /> <p></p>Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-78698412212152839512018-07-09T17:40:00.003-07:002018-07-09T17:40:12.661-07:00My delayed update- Surgery to Now<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-XE2FWNyTA_k/W0P61KQNqeI/AAAAAAAABxQ/NW3lp3aXt9ow7w0KVP3wvitlSijNN0tWwCLcBGAs/s1600/36859531_10156381923657777_4322554154410049536_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-XE2FWNyTA_k/W0P61KQNqeI/AAAAAAAABxQ/NW3lp3aXt9ow7w0KVP3wvitlSijNN0tWwCLcBGAs/s320/36859531_10156381923657777_4322554154410049536_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping is her peace and comfort right now</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #660000; font-family: inherit;"><b>So I have been really bad at posting an update. I forgot what it was like to sit in a waiting room for so long and wait for word. From the time she left the room and returned, she was gone for nine and a half hours. Nigro ended up doing the Ross procedure. His words to us, " The right side of her heart was such a mess, I can't even begin to describe what we walked into." He said even once he pulled her mechanical valve out, the valve still needed to be cleaned up and receded. There was a 25mm cadaver valve put in on pulmonary side and there is minimal leaking, which he told us is to be expected. All in all, the surgery was a success. </b></span></div>
<span style="color: #660000; font-family: inherit;"><b><br /></b></span>
<span style="color: #660000; font-family: inherit;"><b>Now lets step into recovery. I asked this question in my Ross support group, because when Lily was finally awake, she was dripping sweat, only once having an actual fever.The question was, is it common for patients to become overheated from circulation change. The response, it is very common for patients who have the Ross, to get overheated very easily. That was only the beginning though, next was the partial collapse of her left lung, from all the excess fluid hanging around. That was why we got her up and walking 24 hours after surgery. She only had 1 chest drainage tube, vs the 3 she usually has, and it wasn't helping her move fluid. Next on the curve ball list, Lily ended up with heart block in the first degree. (<a href="https://www.equimedcorp.com/rhythms/topic/41/" target="_blank">Frist-degree atrioventricular block</a>) So I took the following excerpt from the previous link, because it explains it better than I can. </b></span><br />
<br />
<h3 style="font-family: Arial, sans-serif; font-size: 1.8em; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: 18px; margin: 0px 0px 1em; padding: 0px;">
<span style="color: #990000;">First Degree AV Block</span></h3>
<div style="font-family: Arial, sans-serif; font-size: 1.3em; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: 19.5px; margin-bottom: 15px; margin-top: 0.5em; padding: 0px;">
<span style="color: #660000;">First degree AV block is simply an increase in the time it takes for the impulse from the atrium to reach the ventricles. In a normal heart rhythm, the <a href="https://www.equimedcorp.com/rhythms/topic/31/" style="margin: 0px; outline: none; padding: 0px;">PR interval</a> is in the range of .12 to .20 seconds. In first degree AV block, that interval will exceed .20 seconds and can be as long as .50 seconds in extreme examples. The cause for this delay lies in the AV node. The <a href="https://www.equimedcorp.com/rhythms/topic/29/" style="margin: 0px; outline: none; padding: 0px;">AV node</a> is suppose to cause a certain amount of delay in the impulse reaching the ventricles to allow for the ventricles to fill with blood, but in first degree AV block, this delay is increased.</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-QTw6Yul6shU/W0P61G1QoJI/AAAAAAAABxM/qeeCFY2-TRosH3wNHeMd9RLMTNr-85XGgCLcBGAs/s1600/36848438_10156381922597777_7358554789493342208_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-QTw6Yul6shU/W0P61G1QoJI/AAAAAAAABxM/qeeCFY2-TRosH3wNHeMd9RLMTNr-85XGgCLcBGAs/s320/36848438_10156381922597777_7358554789493342208_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing crafts in the craft room</td></tr>
</tbody></table>
<div style="font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: 19.5px; margin-bottom: 15px; margin-top: 0.5em; padding: 0px;">
<span style="color: #660000; font-family: inherit;"><b>They worked quickly to address this, by stopping certain meds, checking her blood gasses and seeing what she needed and what needed to be decreased. It was all taken care of quickly, and 24 hours later, it was it never happened. And then tachycardia creeped in and our missed beats reappeared. Her tachycardia never got above 180's until today and then we hit the 260's. We are currently waiting on her EKG results, which is being done now. Which will also hopefully explain her missed beats. She has 1 to 2 second pauses between beats every few minutes. Lily's heart has always kept us on our toes, which in my language, has always stressed me out. </b></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-C0Osb1nvu9A/W0P61FnM3FI/AAAAAAAABxI/WKE5lKHp3loHigqxBWlK3zPWDljw1YC6QCLcBGAs/s1600/36885814_10156381920252777_3343660060302639104_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-C0Osb1nvu9A/W0P61FnM3FI/AAAAAAAABxI/WKE5lKHp3loHigqxBWlK3zPWDljw1YC6QCLcBGAs/s320/36885814_10156381920252777_3343660060302639104_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the child life room, the one room in the hospital that brings her joy.</td></tr>
</tbody></table>
<br /><span style="color: #660000;"><b>I need to email her main cardiologist and get him in on the loop, I know surgery day, Dr. Nigro was texting him about her and how everything went. But since then, I am not sure if they have kept him up to date on her progress. I am sure he would be able to offer advice and guidance when it comes to Lily, as he has been taking care of her since the day she was born. This momma's nerves are shot, I am done doing the hospital thing, but when it comes to Lily, I will continue to do whatever she needs of me. My beautiful Warrior Princess. </b></span><div style="font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: 19.5px; margin-bottom: 15px; margin-top: 0.5em; padding: 0px;">
<br /></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com2tag:blogger.com,1999:blog-3693747345232394711.post-85410822640140978312018-07-05T11:28:00.003-07:002018-07-05T11:28:39.392-07:00Surgery day- Open Heart Surgery #6Today has been a day of a lot of emotions. It started last night. We took a walk and watched fireworks, then we went back to our room to settle in for the night. The tears started, along with her anxiety, the monitor went off because her heart rate was up, and when we tried to ease her fears, it just seemed to make things worse. I finally had her daddy tell her goodnight, and sent him back to the Ronald McDonald's House, which left, Lily, grandpa, and myself in the room. We were waiting for her stepdad to get here. He finally made it, he gave her some love and kisses, got her settled into bed, and then him and grandpa left to go to bed. Normally I turn the TV off and have her go to sleep, but I knew that wasn't going to work last night, so I put a movie on, pulled my recliner chair next to her bed, took her hand in mine, and we both fell asleep like that. I woke up several times in the night, to just check in on her, make sure she was doing OK, which she was. I was awoken at 4:10 to her crying, because we lost the use of her IV for blood draws, it was still usable for meds, but unfortunately, we had to stick her for a blood draw this morning. That set off a domino like effect this morning. After that, everything made her cry. She cried when it was time to use the horrible wipes for surgery prep. She cried when it was time to get into the wheelchair to go do to pre-op. She cried when we met the anesthesiologist and she cried even more when she found out mommy couldn't go back to the OR with her, like I have done the past few times. I wanted to cry with her, I have wanted to cry several times, but that is not a luxury I will allow myself, because Lily needs us all strong right now. She was taken back to the OR at 7:00 am. It took them a good amount of time to get all her lines placed and then to be able to get through her sternum, since she has so much wire from her surgeries. We got the call at 9:00 am that she was finally on bypass. Nigro told us to expect for a 5-6 hour surgery. We still aren't sure what the course of the surgery will be. We came to San Diego with the intentions on him doing the Ross Procedure, but after her cath and some further images he said he wanted to get in there to make sure that was the correct thing to do. He said we might end up retaining her mechanical valve after all.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-zBXK94ovJMQ/Wz5hqu0I_JI/AAAAAAAABwo/xKNvmGE6_PE-w9842mNEBJNH6pkRodtJACLcBGAs/s1600/36688548_10156371918197777_305678551942692864_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://3.bp.blogspot.com/-zBXK94ovJMQ/Wz5hqu0I_JI/AAAAAAAABwo/xKNvmGE6_PE-w9842mNEBJNH6pkRodtJACLcBGAs/s320/36688548_10156371918197777_305678551942692864_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying to comfort her before surgery</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-fTC88tHtKXc/Wz5h2viPNVI/AAAAAAAABws/V9GsdhdbbIIzWKP9FWR6t_Ob5WlMDRxxgCLcBGAs/s1600/36710763_10156371918297777_5841562466416328704_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-fTC88tHtKXc/Wz5h2viPNVI/AAAAAAAABws/V9GsdhdbbIIzWKP9FWR6t_Ob5WlMDRxxgCLcBGAs/s320/36710763_10156371918297777_5841562466416328704_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandpa, Lily, Mommy</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-H1v2_Ez3pxk/Wz5h5lTvrqI/AAAAAAAABww/L7Ebp24Hc-IH3ALUUWgjcjuXALCnw1nyQCLcBGAs/s1600/36653610_10156371918327777_6349713718086991872_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://4.bp.blogspot.com/-H1v2_Ez3pxk/Wz5h5lTvrqI/AAAAAAAABww/L7Ebp24Hc-IH3ALUUWgjcjuXALCnw1nyQCLcBGAs/s320/36653610_10156371918327777_6349713718086991872_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stepdad, Lily, Mommy</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-vHG6mjGpHqo/Wz5i2ShEWbI/AAAAAAAABw8/HCGOzQDbOPwPogRWF75PW84PlICGRWH6gCLcBGAs/s1600/36716123_10156372381592777_992821414622920704_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://4.bp.blogspot.com/-vHG6mjGpHqo/Wz5i2ShEWbI/AAAAAAAABw8/HCGOzQDbOPwPogRWF75PW84PlICGRWH6gCLcBGAs/s320/36716123_10156372381592777_992821414622920704_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily & Daddy</td></tr>
</tbody></table>
<b><u><i>My thoughts on it: </i></u></b>If we retain the valve, we will continue with life as it has been, and watch and pray that this hole or more holes don't happen over time Which is why I didn't go to Boston, or CHOP, or PCH, because I didn't like the thought of "patching" the hole.<br />
<br />
If we go with the Ross procedure, it isn't a guarantee that she won't have to have more surgeries in the future, but it would give her a future of life without blood thinners. Which is what we want for her. Because one day she will want to have children and being on blood thinners is very risky during pregnancy. I know that is way down the line, but as a mother, I try to look at my children's lives as a whole. Lily's life is complex and if we can make that some what easier, somewhat more normal, I want to give that to her. <br />
<br />
I sit here in the waiting room, again, with my heart in my throat. You never realize how long 5-6 hours are, until you are stuck waiting for word on how your world is going to change again.Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com2tag:blogger.com,1999:blog-3693747345232394711.post-1783398139412659232018-07-02T18:49:00.002-07:002018-07-02T18:49:45.644-07:00San Diego-Rady<div class="separator" style="clear: both; text-align: center;">
I meant to post a blog once we got here yesterday, but the trip did not go as planned. For those that follow me on Facebook personally already know what happened, for everyone else, let me catch you up.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-xVZaxKRHOwk/WzrOnR4xqKI/AAAAAAAABvk/u5WFMFI66Msk6HtqLOYiCMppX6QdLVf3QCLcBGAs/s1600/36448071_10156362684592777_3331019052427509760_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://2.bp.blogspot.com/-xVZaxKRHOwk/WzrOnR4xqKI/AAAAAAAABvk/u5WFMFI66Msk6HtqLOYiCMppX6QdLVf3QCLcBGAs/s320/36448071_10156362684592777_3331019052427509760_n.jpg" width="240" /></a>Yesterday we left at 10:30 am, I left the other pieces of my heart behind with the remainder of my children, my sister and her husband who is living with us, my nieces and nephew, and my husband. Lily and I started by going to breakfast, which went smoothly. I Should mention at this time that we rented a rental car, as not to put the wear and tear on my vehicle.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-EOOnmyNMCho/WzrOnS7k01I/AAAAAAAABvg/ZR0iye5dZZsfR29l9ISqfftc1fD6Mjg5wCLcBGAs/s1600/36451467_10156362779022777_1493316139764154368_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://1.bp.blogspot.com/-EOOnmyNMCho/WzrOnS7k01I/AAAAAAAABvg/ZR0iye5dZZsfR29l9ISqfftc1fD6Mjg5wCLcBGAs/s320/36451467_10156362779022777_1493316139764154368_n.jpg" width="180" /></a>We got onto the road and were off, Lily's dad was about an hour and a half behind us, and it truly was a good thing he was. All of a sudden the car started flashing low oil pressure, so I pulled over, we called the rental company and they checked via onstar and everything looked fine, it was just a bad sensor, so we kept going. A few miles down the road, we stopped so Lily could go to the restroom, we came back out to restart the car, and wouldn't you know it, it wouldn't start. Not only wouldn't it start, it was so dead, it locked the key into the ignition. I called my husband, because I was so frustrated, I was afraid I would blow up if I called them. The company ended up bringing us another car, but it took them an hour and a half. By that time, Lily's dad had caught up to us, and had started to give the battery some go juice, and they rental company used a second battery pack to boost the power to jump it. All this time in the heat, (the gas station only had a swamp cooler) had wiped Lily out.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-wlFQFk_In1A/WzrOn4-4T5I/AAAAAAAABvo/Y8rHfOPh72EQ3GSoybemqXXdqLxDwcncACLcBGAs/s1600/36519238_10156365965747777_1455654881510555648_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://3.bp.blogspot.com/-wlFQFk_In1A/WzrOn4-4T5I/AAAAAAAABvo/Y8rHfOPh72EQ3GSoybemqXXdqLxDwcncACLcBGAs/s320/36519238_10156365965747777_1455654881510555648_n.jpg" width="180" /></a>Once we were in the new car, she passed out for a bit, which she totally earned. She never complained, but you could see how hard her heart was working, because I could see the veins throbbing in her neck. The rest of the drive into San Diego was uneventful. We truly enjoyed watching the temperature drop, leaving from the 100+ temps, and arriving to low 70's, was glorious. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-V3GmmUyQaik/WzrOnm2uANI/AAAAAAAABwM/E9JhSsSZSFQa5kdtMGgDM-HnqcKwwumawCEwYBhgL/s1600/36478182_10156363883977777_1191583919737143296_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://1.bp.blogspot.com/-V3GmmUyQaik/WzrOnm2uANI/AAAAAAAABwM/E9JhSsSZSFQa5kdtMGgDM-HnqcKwwumawCEwYBhgL/s320/36478182_10156363883977777_1191583919737143296_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When we first arrived in San Diego</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
She is starting to look older and older to me. Being able to talk with her more and more about what she is about to go through, makes me realize how grown up she is becoming. Although still a child, she is becoming such a beautiful young lady, and with this surgery, we can watch her become a beautiful woman.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-dh_S38iCC3k/WzrOoaGfBhI/AAAAAAAABwg/4vh1RKYcsF0kTY1EB0fZboPl55O9GlqpACEwYBhgL/s1600/36543220_10156365975337777_5931616570424950784_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="827" height="320" src="https://1.bp.blogspot.com/-dh_S38iCC3k/WzrOoaGfBhI/AAAAAAAABwg/4vh1RKYcsF0kTY1EB0fZboPl55O9GlqpACEwYBhgL/s320/36543220_10156365975337777_5931616570424950784_n.jpg" width="275" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily and Dad at RMH San Diego</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-3fkuVCbrJqk/WzrOnJcD0FI/AAAAAAAABwM/DT4evM50NGwxEp1AWSFOZzzTh8n8hAYfACEwYBhgL/s1600/36440180_10156363884062777_4859730223836430336_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://2.bp.blogspot.com/-3fkuVCbrJqk/WzrOnJcD0FI/AAAAAAAABwM/DT4evM50NGwxEp1AWSFOZzzTh8n8hAYfACEwYBhgL/s320/36440180_10156363884062777_4859730223836430336_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily and Mom at RMH San Deigo</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-J5FSp-wZ8OY/WzrOogY3FhI/AAAAAAAABwY/arGddZNgjawravRaMQQTEbeUg6pT4IkWACEwYBhgL/s1600/36573683_10156365975642777_6614070784811859968_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://4.bp.blogspot.com/-J5FSp-wZ8OY/WzrOogY3FhI/AAAAAAAABwY/arGddZNgjawravRaMQQTEbeUg6pT4IkWACEwYBhgL/s320/36573683_10156365975642777_6614070784811859968_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily and Daddy snuggles before surgery consult</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-0QeRCMqlgAA/WzrOoUS2qWI/AAAAAAAABwc/15GpwM-X6X8BqCtAiKq2ft-tcSlx8IERACEwYBhgL/s1600/36561145_10156365965902777_2843304513576632320_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://4.bp.blogspot.com/-0QeRCMqlgAA/WzrOoUS2qWI/AAAAAAAABwc/15GpwM-X6X8BqCtAiKq2ft-tcSlx8IERACEwYBhgL/s320/36561145_10156365965902777_2843304513576632320_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily waiting for lab draws</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-5dp44hmvQcU/WzrOozJmtrI/AAAAAAAABwU/2DILeRtu3nIszR2Th4BtknVeXoZYKcJdwCEwYBhgL/s1600/36608682_10156365966397777_6439572877825015808_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://4.bp.blogspot.com/-5dp44hmvQcU/WzrOozJmtrI/AAAAAAAABwU/2DILeRtu3nIszR2Th4BtknVeXoZYKcJdwCEwYBhgL/s320/36608682_10156365966397777_6439572877825015808_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the Rady's Children's Heart Center made out of Legos</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-q8hn0-w3Y1I/WzrOo6paqRI/AAAAAAAABwc/ltg-UAzGMfo6lW99cXQe0jSaM1HPYEChwCEwYBhgL/s1600/36652468_10156365966567777_9203040821316681728_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-q8hn0-w3Y1I/WzrOo6paqRI/AAAAAAAABwc/ltg-UAzGMfo6lW99cXQe0jSaM1HPYEChwCEwYBhgL/s320/36652468_10156365966567777_9203040821316681728_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was on the board in the surgery consult room waiting for us. I may not be a McLaughlin anymore, but the sentiment was still the same.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-KzaNTsu2cyw/WzrOo2YEkzI/AAAAAAAABwQ/maprzVim_egJzVJ2_W3vfn6slV38gjcNgCEwYBhgL/s1600/36580727_10156365966692777_2081180339476103168_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-KzaNTsu2cyw/WzrOo2YEkzI/AAAAAAAABwQ/maprzVim_egJzVJ2_W3vfn6slV38gjcNgCEwYBhgL/s320/36580727_10156365966692777_2081180339476103168_n.jpg" width="240" /></a> Ok, so there is a story behind this picture. While we were waiting to see Dr. Nigro, Lily picked up this book, and it was pictures with story of heart children. She was just flipping through it, not reading their stories, and came across this photo. She stopped and studied it then looked at me. The words that came out of her mouth next made me almost cry. "Mommy, I'm the one that is sitting out, while my brothers and sister jump behind me. But here soon, that will be me." I swallowed a lump in my throat and kissed her head and said told her yes she will. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Today during consult we learned that we have to have a cath tomorrow to help balloon the arch in her heart, that the narrowing is not what they want to see. If the ballooning doesn't help, then they will try something different in the OR but it will add length to the surgery. I also felt kind of defeated but it also reaffirmed the choice of coming here, when we were told that her new valve is leaking around it, and blood is once again spilling into the wrong chambers. Several different approaches to surgery were given to us, if the straight forward procedure doesn't work. I will let you know which one is gone with, after surgery is done on Thursday. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Until then, I am going to go enjoy a little bit of time with my girl before she is checked into the hospital this evening, because her INR fell to fast, and we have to start heparin injections. Thank you to all for your continued thoughts and prayers. I will update tomorrow after cath.</div>
<br />Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-48351396254875875792018-05-23T16:12:00.001-07:002018-05-23T16:12:17.648-07:00Dreams are not premonitions <span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><b>Have you ever been so scared, you stop crying from fear, and your next reaction is anger? I keep bouncing between the 2 at this moment. Between utter fear and and raging anger. I had a dream the other night, that it was Lily's surgery day, and she is begging me not to let them put her under. Tears are pouring down her face. She looked at me and said, "Mommy, if they put me to sleep, I will never wake up." I stroked her head and kissed her, while she fell asleep. Shortly into her surgery, I was paged, and was then told, she passed away. She was right. she never woke up. I woke up crying, I know it was just a dream, I know it wasn't real, but it felt so real. </b></span><br />
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><b>That is how it feels, daily, I live with the constant fear in the back of my mind, that Lily's heart could stop at anytime. Yet I try to block it out, live each day as a blessing, and thank the Lord for another day with my girl, and of course all my children. I have good days and I have bad days. I try so hard to compartmentalize, so I don't constantly feel on edge, but with this being our 6th surgery, I am so scared. So very scared. So I spend a lot of time on my knees, asking to borrow strength and help with peace of mind. We have 5 weeks and 3 days until we leave to San Diego, and with each passing week, as it creeps closer to us leaving, my brave face is starting to falter. I keep staring at her beautiful little face and memorizing every detail of her, because as much as I know that dream was not real, it still sits in the back of my mind, and has rattled me to the core.</b></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-ZMsVJKY52fc/WwX03PdyjII/AAAAAAAABvM/EQJOod8OlGYDCED9XbK7R9rvOlmwOZAiACLcBGAs/s1600/33398263_10156272113737777_5017197589062221824_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://1.bp.blogspot.com/-ZMsVJKY52fc/WwX03PdyjII/AAAAAAAABvM/EQJOod8OlGYDCED9XbK7R9rvOlmwOZAiACLcBGAs/s400/33398263_10156272113737777_5017197589062221824_n.jpg" width="300" /></a></div>
<br />Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-80221051042083013362018-05-08T13:10:00.002-07:002018-05-08T13:10:20.966-07:00Decision Day- New Beginnings <span style="font-family: Georgia, Times New Roman, serif;"><b>I have started this blog so many times and have stopped it because I have been angry about it all. Those who don't follow me on Facebook, let me update you. 3 days post-opt, we found a new hole in Lily's heart. It was close to the other one, so we thought it might have just been the stitching came a little undone in that area. Well fast forward from October to April. The mummer we started with has gotten louder and much larger.</b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="font-family: Georgia, Times New Roman, serif;"><b>Dr.Rhee ordered us to do a CT dye scan, so we could get a better look at her heart and hopefully build 3D model of her heart. We succeed in doing so, but the answers we were looking forward was not a straight forward answer like we were hoping for. The hole in her heart is in the right ventricle and right next to her Onyx valve. The 2 different trials plugs and patches they tried at PCH wouldn't work. One would complete block the flow of the valve. which would kill her. The other one, we would run the risk of it causing a stroke. </b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="font-family: Georgia, Times New Roman, serif;"><b>So we reached out to Boston. CHOP, and Rady (SD). Boston suggest coils, which do not work for Lily. She seems to throw them. CHOP suggest a plug for a fix for now, but knows she will need surgery down the line. Rady seemed to be the only one who gave us something to think about. </b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="font-family: Georgia, Times New Roman, serif;"><b>Dr. Nigro suggested the Ross procedure, which is where they take the aortic valve and replace it with the pulmonary valve. Then the pulmonary side is replaced with a cadaver valve. What would this mean for Lily? It would be life altering! She would no longer have the mechanical valve, which is the reason she is on the blood thinners. She would be able to play like a normal child. She would be able to have children without the complication of blood thinners, because there are many. If the cadaver valve was to fail, at that point, we would be able to use what is called a Melody or Sapien valve, which would not require blood thinners. They would be able to place the via cath.</b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="font-family: Georgia, Times New Roman, serif;"><b>As much as we don't want to do another surgery, this hole has happened twice already. The area has deteriorated from the multiple surgeries, the patches we have put on it, have not worked because the area is to thin. This surgery would reinforce the wall between the right and left ventricles. It is a pretty drastic surgery but the best option in the long run. This decision wasn't made lightly but it was made wisely. </b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="font-family: Georgia, Times New Roman, serif;"><b>Now, here comes the big part. Could this be done here in AZ at Phoenix Children's Hospital, by Dr. V? Yes it could be. Our preference would be Rady San Diego, Dr. N, because he has done 4 previous surgeries with Dr. C. He was the one who suggested this. I feel that he is the one who understands her heart best. If a surgeon here in AZ couldn't come up with this, why should I trust that he knows her heart best, when he himself has said many times over how "complicated" her heart is. So Dr. R has said he will send to Rady for clinic visit, and for a cath, and when insurance pushes back, which it will, because they will want the surgery done here in state, he will have Dr. V write a letter for the insurance as to why it needs to be Rady.</b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="font-family: Georgia, Times New Roman, serif;"><b>So now we wait. We wait for the call from Rady. We wait for our lives to change. We wait for Lily's life to change. We wait for our new tomorrow.</b></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-CiBtsxAWNpQ/WvIDvyIHbFI/AAAAAAAABuo/2jmxmAY9rc8GpR6o5S1J7Hf0HmqIyuzWwCLcBGAs/s1600/32082577_126023508261196_597322271748521984_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://3.bp.blogspot.com/-CiBtsxAWNpQ/WvIDvyIHbFI/AAAAAAAABuo/2jmxmAY9rc8GpR6o5S1J7Hf0HmqIyuzWwCLcBGAs/s320/32082577_126023508261196_597322271748521984_n.jpg" width="180" /></a></div>
<br />Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-70658894957281964512017-10-19T14:14:00.001-07:002017-10-19T14:14:33.845-07:00Surgery update 3They have finally pulled Lily off bypass (the heart and lung machine). They are checking for bleeding spots. They will make sure to suture all the spots and once that is taken care of, they will start to close her up. We still have a bit of time ahead of us before she comes upstairs or we see her, but the fact that she is off bypass is wonderful news. That was something I have been praying very hard about all day.<br />
<br />
I will update again as soon as I hear more news.Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-44616380357348763622017-10-19T13:18:00.000-07:002017-10-19T13:23:00.096-07:00Surgery update-1 & 2<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;">Ok so this blog post is going to be sans pictures because I am posting from my tablet and it won’t allow me to add any.</span></b><br />
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b>
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;">Today started really early, with us being to the hospital at 5:30 and her being taken back to the O.R at 7:30. The time in between that started as mellow playful fun, this slowly built to anxiety and tears. She begged us not to do this. Daddy gave her a kiss goodbye, while I followed to the O.R in my bunny suit. I held her hand, stroked her hair, and wiped her tears, while she fell asleep. All while whispering to her that I loved her and she would be ok. I said a prayer over her, gave her a kiss, and saw one more tear run down her face, as they escorted me out.</span></b><br />
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b>
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;">I have to tell you, handing her over as a baby, which one would think would be so much harder than handing an older child over, was actually easier than what I just did this morning. I think a part of me just broke. I don’t know how to put it into words, but listening to her beg to me, not to make her do this, and knowing I had to let it happen. To know you have to put your child’s life at risk to try to save it, is one of the scariest decisions.</span></b><br />
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b>
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;">So moving on from there, it took them a bit of time to place all her lines. No surprise really, Lily doesn’t have a lot of areas left to access and the ones she does have are really hard to get. So once those were placed they started in on her chest, which also took a while because of all her scar tissue.</span></b><br />
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b>
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;">The last update we received, they were suturing in her new aortic valve, which is a 21mm, instead of the 19mm she had. This should be the right size for her for adulthood, for her growth pattern. They do still need to close the VSD and the Fistula. So we still have a bit of time ahead of us. I will update when I have another update.</span></b><br />
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b>
<b><span style="color: #20124d; font-family: "arial" , "helvetica" , sans-serif;">To all that have been praying for us today, thank you. To all that have kept us in their thoughts today, thank you. It means the world to us.</span></b>Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-22912904357571727852017-09-27T20:34:00.001-07:002017-09-27T20:42:08.903-07:00I'm a little teapot......<span style="color: #990000; font-family: "verdana" , sans-serif;"><b>If I could have placed bets on how today would have went, I wonder if I would have bet on the original plan, or the outcome of the day. With how things have been lately, I probably would have hedged my bets and went with the outcome of the day.</b></span><br />
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b>I woke up and hit the ground running, which is a bad omen to me, I am usually ahead and have the car packed the night before, but I felt like I had a million things left to do, and was still running through check lists as I was dropping Elaina off at school. Chris arrived to the hospital way ahead of me, which is not something that happens, I just felt like I couldn't catch up. I finally got there, we got checked in, taken up, and settled in. That was the beginning of the end. They asked us when was the last time she took her coumadin. We told them the night before, as we were never instructed to stop it (nor were we ever told to do so during her first cath either, but that is neither her nor there.). Dr. G said, if she is above 2.5 she would be a risk and we would not be able to proceed. I laughed and said, "Of course, we won't be able to." I understand the risk, and I would never put my daughter at that risk, so please don't think I am mad at the fact that, we didn't do cath today for that reason. </b></span><br />
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b>I quickly shot off a text to the surgeon's PA to let her know what we were just told and ask why we were not informed of this. She said she would come down to talk to us. After about an hour of waiting, labs came back, and sure enough Lily's INR was 2.8, and was she was at risk or bleeding out in cath lab. They said we would have to reschedule for a time when we could stop her meds 2 days in advance like cath lab advises. I saw red....I lost it...Not screaming unglued lost it, but a dignified you have messed with me for the last time, lost it. </b></span><br />
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b>We were in on Monday for pre-op testing, only to be told we wouldn't be having surgery but a cath, never once were we told to stop her meds. Cath lab didn't call to confirm until 4 o'clock pm yesterday, that Lily was indeed down for a cath, but never did they mention for her to stop her meds, but even then it wouldn't have been enough time. I could have done more by tweaking her diet, then stopping her meds, if we just would have been made aware. BUT NO ONE TOLD US!! So that was the beginning of it, the communication, or lack there or, how no one tells us anything. How I can call and leave a message, and wait the allotted 24-48 hour time they ask for, for you to wait to hear back from them, only never to hear anything back. So I rinse and repeat, until I leave a very pointed message about how I haven't received a call back, and only then, does my phone ring 15 mins later with apologize. That somewhere between her first cath and now there has become such a large disconnect I no longer trust this team. Because if you can't communicate with me something as simple as not to take medication before a procedure, how am I supposed to trust you with the bigger things. You come in and tell me her heart is complex, well I can list her defects, surgeries, repairs, and what needs to be done right now. I listen to every word you say. This may be your patient but this patient is my child, and I have known her heart for longer then you have known her case. You want to come in and make decisions and wait to clue us into what is going on until the last minute, that isn't going to work and we will get another team. A team is built off of trust and respect and there is not an ounce of either in this relationship as of now. </b></span><br />
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b>A few other things we said, but they apologized over and over again, and said they would try to figure out where the disconnect was coming from. We will reschedule this cath, but we will put a pin in surgery until we get a second opinion.</b></span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "verdana" , sans-serif;"><b><a href="https://3.bp.blogspot.com/-LuFbl0XL5Wc/WcxvhSZ5WTI/AAAAAAAABtc/0mwmpjOEf0kvzWwdwkA1XjFsdV1j1uy-gCLcBGAs/s1600/22046513_10155652191377777_1093642401661957041_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://3.bp.blogspot.com/-LuFbl0XL5Wc/WcxvhSZ5WTI/AAAAAAAABtc/0mwmpjOEf0kvzWwdwkA1XjFsdV1j1uy-gCLcBGAs/s320/22046513_10155652191377777_1093642401661957041_n.jpg" width="180" /></a></b></span></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com2tag:blogger.com,1999:blog-3693747345232394711.post-85265784321616746882017-09-26T14:52:00.004-07:002017-09-26T15:35:35.574-07:00Weighing our options<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">The frustration is real, you could almost cut it with a knife right now in our household. I have spent a lot of time sending emails, on the phone with my ex husband, sounding off with friends, and asking advice from other heart moms. So let me start at the beginning so you can understand why I am feeling this way, why those closest to Lily are feeling this way. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">Yesterday was pre-op testing. We get there and not even 15 minutes into waiting does the surgeons PA come in and say, "OK, try not to be mad." First off, don't start off with that statement, if you don't want a person to be upset. She continues with, "We have been discussing Lily all morning, and I am pretty sure that Dr.V wants to do another cath before doing a OHS." I am pretty sure my nostrils flared at that statement because she put her hands up and said, I am not positive, and we'll wait to hear for his final decision, but he is in surgery right now. "</span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">So we waited, several hours mind you, no pre-op testing being done, because since they were not sure Lily was going to surgery, they were not going to put her through blood draws and such, when they can just get such things in cath lab, once they put her under. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">Dr. V finally came in, with his PA, while we were getting an echo, because they wanted a new one, so they had that for her cath tomorrow. Every time I say the word cath, it leaves a bitter taste in my mouth. He was very short, because he had another surgery to get to. He told us he wanted to get a better understand of her heart, because it is very "complex". This is a word I hear them use every time we talk. He said that they need to look at the fistula, the arch, and her hole. To find the best approach in "fixing" them. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">Hold just a second. I know we went in and tried to fix issues in her last cath, but we decided from that last one that she did indeed need surgery to fix these issues. Now, months later, you are unsure all over, and need another cath to look at things again. To put a child under repeated anesthesia is a risk, but a child who has sleepy heart rate also known as Bradycardia, is another risk. Last cath, Lily had a lung collapse too, she is battling with lung pressures. I am slowly losing confidence in the cardiac team, and this is something I have discussed with Lily's father, and now with Lily's cardiologist Dr.R. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">We love Dr.R, he has been her doctor since she was born, I trust his judgement, and he has been the one advocating that she needs this surgery. The surgeons PA even said to Chris and I that they didn't want to call him to tell him that they decided to do the cath vs surgery, because they knew it was going to be a fight. I understand the need to obtain as much information as you can, but her cardiologist even said it was not critical for them to do so, but he is just her cardiologist, not a surgeon. He did say, if the information we gained from this was not in at all helpful, he would help us find other doctors and surgeons for second opinions. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">We have never once had to think of going that route, it truly saddens both Chris and I that we have come to this point, but when you have lost confidence and trust in the team that is in charge of your child's health and wellbeing, and on such a huge magnitude, you do what you have to do. I would move heaven and earth to protect my daughter. I have said it before, I would gladly trade my life for Lily's, if it meant for her to live happy and healthy, as I know any mother would. I started doing research, her original surgeon retired but came out of retirement and is a professor at the University of Alabama, oversees cases at the Children's Hospital of Alabama, granted he may not be her surgeon, but he would have his hands on her case, and to us that would be all that matters. Other wise, we are looking at Stanford, CHLA, CHOP, or Texas Children's Hospital. We will have fresh cath results, echo, but a surgery done 7 years ago. I am listening to my mothers intuition on this, it has never failed me before, I pray it won't fail me now. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">So, Wednesday we have cath, we will be in the hospital 1-2 days, Lily doesn't respond well to them at all.I will update that day and let everyone know what is going on then. </span></b><br />
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;">To everyone who donated on Go Fund me. All that money is going into a savings account, so when we do have surgery it is there. Heaven forbid we do have to travel, it will be needed for that. </span></b><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-BhOG4W1acvQ/WcrL37BeRRI/AAAAAAAABtA/NfLSkpwL5Bo31oS6p-XmvNfNc6jTT3hRQCLcBGAs/s1600/lilypreop1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://1.bp.blogspot.com/-BhOG4W1acvQ/WcrL37BeRRI/AAAAAAAABtA/NfLSkpwL5Bo31oS6p-XmvNfNc6jTT3hRQCLcBGAs/s320/lilypreop1.jpg" width="180" /></a><a href="https://4.bp.blogspot.com/-F0grEDrLbng/WcrL83C8CNI/AAAAAAAABtE/Tyj0xMGny9Q4aL6sVx_ZNU-_h45QbJviACLcBGAs/s1600/Lilypreop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="405" height="320" src="https://4.bp.blogspot.com/-F0grEDrLbng/WcrL83C8CNI/AAAAAAAABtE/Tyj0xMGny9Q4aL6sVx_ZNU-_h45QbJviACLcBGAs/s320/Lilypreop.jpg" width="180" /></a></div>
<br />Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-17948328032566166942017-09-09T01:25:00.001-07:002017-09-09T01:28:15.965-07:00The long awaited decision <span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>So a while back, in the middle of August, I played a little tug of war with a little PCH. I have not been this frustrated in a long time. We had our surgery consult June 16th, I waited, and waited, to hear final word of what was happening. Yet, it never came, even though I called and left countless messages. Finally PCH called and said that Dr.R wanted us to come in, I was thinking we were finally going to find out what Dr.V decided. Well we did! Dr.R walked in and the first thing he said was, "When is surgery scheduled for?"</b></span><br />
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Chris and I looked at each other baffled. I quickly regained my wits and countered, "Oh, so surgery has been decided. How wonderful to be finally told of the decision." Dr.R asked if we had not been contacted and I confirmed that we hadn't. He quickly excused himself from the room, only to return with the surgery team. They came in and apologized and said that someone would be in contact with me within a week to schedule her surgery.</b></span><br />
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Well a week came and went, we heard nothing. I waited for a week longer and then finally called. I was then told, they had no confirmation that Lily was due to have surgery and that they needed to hear from Dr.R and Dr.V before we could schedule anything.</b></span><br />
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>I wish I could say I held my temper, but I didn't. I asked if she was a sever case if this would be happening. That I know that she is stable for now, but just a year ago, we talked that we might have a few years before surgery. 6 months later, her heart declined. I told them she is a moderate case, and I understand that there are other children that take precedent over Lily's case. I did apologize to whom I was talking to, letting her know, I know it wasn't her fault this was happening, but I needed her to see my side as a parent.</b></span><br />
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Lily's health is declining, she grows tired quickly. She is almost always cover in sweat, even when she is sitting doing nothing. Her cough has returned and is not as bad as it was, but it is getting wet again. I see her run around and play, but she always ends up over doing herself. It breaks me to have to tell her to sit down or sit out.</b></span><br />
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>So with all that information that I relayed to PCH, they finally called me back, 4 times in one day. We set up a CT scan, so we could get pictures for surgery. Before setting that up, we put in for a tentative surgery date of September 25th.</b></span><br />
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-EHPUu87KETA/WbOhNgu0SfI/AAAAAAAABss/6v6ZR5EgqscbWZ-92yOU8_KR6GsZZhOggCLcBGAs/s1600/lilyctscan1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><img border="0" data-original-height="960" data-original-width="540" height="400" src="https://1.bp.blogspot.com/-EHPUu87KETA/WbOhNgu0SfI/AAAAAAAABss/6v6ZR5EgqscbWZ-92yOU8_KR6GsZZhOggCLcBGAs/s400/lilyctscan1.jpg" width="225" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Waiting for her CT Scan</b></span></div>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-hfCGFdQvn6o/WbOhNril8tI/AAAAAAAABso/_rkDLsUvjiM5QlsAZY0wrxVe58XppvIqACLcBGAs/s1600/Lilyctscan2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://3.bp.blogspot.com/-hfCGFdQvn6o/WbOhNril8tI/AAAAAAAABso/_rkDLsUvjiM5QlsAZY0wrxVe58XppvIqACLcBGAs/s320/Lilyctscan2.jpg" width="240" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Lily and her daddy, he was talking with her about being brave, she had just found out she was going to need 2 IV's</b></span></div>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-CKBuMgDnnCg/WbOhOe1B2GI/AAAAAAAABsw/df0dew7RRlc4esZJiQQmnsRuOD30lP0hACLcBGAs/s1600/lilyctscan3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://2.bp.blogspot.com/-CKBuMgDnnCg/WbOhOe1B2GI/AAAAAAAABsw/df0dew7RRlc4esZJiQQmnsRuOD30lP0hACLcBGAs/s320/lilyctscan3.jpg" width="240" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Child life came in and gave her an iPad to help take her mind off of things, while she was getting her IV.</b></span></div>
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-OQQMj0Zxq3M/WbOhNlLlHqI/AAAAAAAABsk/8CGSH7YFrTkARBfJlGNP1EhsjrbAeaQxACLcBGAs/s1600/Lilyctscan.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><img border="0" data-original-height="960" data-original-width="540" height="400" src="https://1.bp.blogspot.com/-OQQMj0Zxq3M/WbOhNlLlHqI/AAAAAAAABsk/8CGSH7YFrTkARBfJlGNP1EhsjrbAeaQxACLcBGAs/s400/Lilyctscan.jpg" width="225" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Me and my sweet lady, taking snapchat pictures, to pass the time, while we waited to be called back for her CT Scan. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Now we wait for surgery. We will be closing her residual VSD, trying to fix the leak around her mechanical valve, or replace it all together. And then, see if we can do anything about her coarctation, it has mild stenosis on the back end of it, but it is in such an odd spot, we aren't quite sure how to address it. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>I forget how to do this, how to prepare my daughter and prepare myself, for surgery. How do you prepare for something you haven't done since your child was 2. We had a team of doctors we had known since before Lily was born. Now we have a surgeon we know nothing of. I have done my research and I know he is a great surgeon, but he doesn't know Lily, he doesn't know the tricks she throws in surgery. Dr.C and Dr.P were always prepared, they knew she threw curve balls. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000; font-family: "georgia" , "times new roman" , serif;"><b>Chris and I both on edge about this surgery. I know it is in the Lords hand, all I can do is pray, pray for comfort and ease, for strength so Lily doesn't see how scared I am. Any words of wisdom would be wonderful right about now. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<b><br /></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b>Until the 25th, I will enjoy all my time with her, take plenty of pictures, and make great memories. You will hear from me next on the day of her surgery.</b></div>
<br />Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-76277992016061862242017-04-30T22:26:00.001-07:002017-04-30T22:35:33.989-07:00We prepare for our Warrior Princess's 5th OHS<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>So we finally met with Dr.R for the official results of Lily's cath. After doing all the research from the information I was given, I knew what was coming, but it was nice to be given the rest of the technical terms and names. So let me catch you up. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-9PIbssSGvJg/WQWCMsfp2fI/AAAAAAAABrM/kb3IcpTY44kE4LDM8H6TF04_L1-QhsylgCEw/s1600/18217350_10155183021207777_1287005835_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><img border="0" height="320" src="https://4.bp.blogspot.com/-9PIbssSGvJg/WQWCMsfp2fI/AAAAAAAABrM/kb3IcpTY44kE4LDM8H6TF04_L1-QhsylgCEw/s320/18217350_10155183021207777_1287005835_n.jpg" width="180" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: start;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b> Lily's coarch repair that was done at 5 days old, hasn't grown. When they attached her vein, they had to suture it all the way around, in a circle, which in turn has created scar tissue, and it is strangulating her arch. blood goes up into it, but all of a sudden runs into a traffic jam, because it is such a narrowing (stenosis). They will try to balloon that, it is in such an area, that a stent isn't an option. We haven't talked about if that doesn't work, it is something that I will bring up at the surgery consult. </b></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: start;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: start;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>That is one repair. The second repair is the Ao-Rv Fistula. First, a fistula means, </b></span></span></div>
<div class="vmod" style="background-color: white;">
<div class="vmod">
<ol class="lr_dct_sf_sens" style="border: 0px; font-size: small; margin: 0px; padding: 0px 0px 0px 20px;">
<li style="border: 0px; list-style: none; margin: 0px; padding: 0px;"><div class="vmod">
<div class="lr_dct_sf_sen vk_txt" style="padding-top: 10px;">
<div style="margin-left: 20px;">
<div class="_Jig" style="margin-left: -20px; text-align: center;">
<div data-dobid="dfn" style="display: inline;">
<span style="color: #990000; font-family: "arial" , "helvetica" , sans-serif;"><b><i>an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs.</i></b></span></div>
</div>
</div>
</div>
</div>
</li>
</ol>
<div style="font-size: small; text-align: center;">
<span style="color: #990000; font-family: "arial" , "helvetica" , sans-serif;"><b><i>Ao= Aorta Rv= Right ventricle </i></b></span></div>
<div style="color: #222222; font-size: small; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>So with that being said, Lily has a passage going from the bottom of her aortic valve to her right ventricle. What I was I told, a patch will be put in place again. So, this is where her original VSD was. The patch was disturbed when we had issues with the Left ventricular outflow tract obstruction (LVOTO). According to Dr.R, the original patch has completely corroded, leaving very little, if any of the original intact. So they will replace that. I am interested to learn what type of material they will be using this time and if they feel we will have a better chance of it lasting, or if we will end up having to replace it again down the line. I know some things can't be foreseen, like this, who would have thought this patch would have done this? But with Lily, we can't close her VSD in the cath lab, it requires open heart surgery, so it is a very valid question for me to ask.</b></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div style="text-align: left;">
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The last repair that needs to be made, is replacing her St.Jude's valve. I have included a picture of it below, so you can get an understanding of what it looks like</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-CSfzfBDPQwU/WQa_kwiUuPI/AAAAAAAABrY/78UseDGmM_UFbOOBKyOn6bF2cFeJacQhgCLcB/s1600/stjudelg.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><img border="0" height="320" src="https://2.bp.blogspot.com/-CSfzfBDPQwU/WQa_kwiUuPI/AAAAAAAABrY/78UseDGmM_UFbOOBKyOn6bF2cFeJacQhgCLcB/s320/stjudelg.gif" width="255" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The valve is made of metal and synthetic material. The leaflets are metal, so when they open and close, if you were to send a cath through there, they could snap the cath off, and it could kill her. I just wanted to help those understand, who don't know the heart as well as some. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Lily has a 19mm valve put in when she was 2. The way it was explained to me then, that was the size of a petite adult female. She should never of needed it replaced unless, the valve failed, there was and infection and we had to replace it, so on and so forth. So after all my research I did and Dr.R confirmed the research I did, she has to have it replaced because her valve is "failing" at the top of mechanical valve. Meaning it is coming detached. Their solution to this problem is to put in a 21mm valve instead.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Now I have questions about that too for the surgeon. Trust me, they are written down, he's gonna love me. I have never met him, he has never met Lily, doesn't know that she throws curve balls in the middle or surgeries. So my anxiety is through the roof, thankfully my doctor has given me something to help with that. I spend a lot of time listening to music, clearing my head, and praying.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>I finally started talking with Lily about her upcoming surgery, she seems to be taking it well, her biggest worry is, that her heels are going to hurt. She remember waking up from her cath and her heels hurt so bad, that we had to prop her feet up with pillows. I told her she wouldn't even notice her her heels hurting.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Then she turned to me, her eyes wide, and says, "Mom, you'll be there right? You'll stay at the hospital the whole time, you won't leave me, because you never left me when I was a baby. You won't leave me now, will you?" </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>I scooped her into my arms snuggled her close and told her I won't leave the hospital until she leaves to go home. I heard a huge sigh of relief, I heard her heart slow down, she kissed my cheek, hugged me, and then ran off. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-KR0ei5NXJ4w/WQbFhVkFRXI/AAAAAAAABro/Mt2vZ1qF6x8zRvczIGY8Fopvw9g7YPXZgCLcB/s1600/18197953_10155183021212777_108593217_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><img border="0" height="320" src="https://2.bp.blogspot.com/-KR0ei5NXJ4w/WQbFhVkFRXI/AAAAAAAABro/Mt2vZ1qF6x8zRvczIGY8Fopvw9g7YPXZgCLcB/s320/18197953_10155183021212777_108593217_n.jpg" width="180" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>I have been blessed with this amazing Warrior Princess, who's heart still beat strong, even when it is tired. She loves her life, she lives her life, and these last 9 years have been the best because I have had this sweet girl in my life.</b></span></div>
</div>
</div>
</div>
<div aria-hidden="true" class="xpdxpnd" data-mh="-1" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: small; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
</div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com2tag:blogger.com,1999:blog-3693747345232394711.post-28083091239339991392017-03-24T14:21:00.000-07:002017-03-24T14:22:04.413-07:00Cath Results and Misplaced Anger<div style="text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">We went in with a hole in her heart and a leaky valve and walked out with so much more.</span></b></div>
<div style="text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div style="text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">My processing has taken time, tears, cursing everyone and no one at all, and anger. Oh the anger has consumed me and it took me a while to place who and what I was angry at. So let me start with the medical side of everything before we delve into my emotional side, because those aren't going anywhere.</span></b></div>
<div style="text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div style="text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">So when Lily was in the Cath lab, we found out she now has pulmonary hypertension, which is a new curve ball for me. Now this little present is from the leak in the mechanical valve. So first Dr.G tried to put coils in, which back fired, then he added a plug. It is exactly as it sounds. The picture below shows you what it looks like. I outlined it in orange for you so you can see it a bit easier.</span></b></div>
<div style="text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-P4WpuuNtwOk/WNWFOpq5i4I/AAAAAAAABqg/6d6OgpPlGvgF2o97OWXuWEuIRK_trWRKACLcB/s1600/IMG_2581.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://3.bp.blogspot.com/-P4WpuuNtwOk/WNWFOpq5i4I/AAAAAAAABqg/6d6OgpPlGvgF2o97OWXuWEuIRK_trWRKACLcB/s320/IMG_2581.JPG" width="240" /></span></b></a></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">Once the plug was put into place, the blood started flowing correctly again. She is no longer coughing at home, which most likely means her pulmonary pressures are going down, but we won't be able to tell that in an echo, only another cath will let us know for sure. </span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">The VSD was non-repairable in cath, because in order to repair it, you go through the aortic valve. With Lily that is a no go because of her mechanical valve, you send a cath through there, the metal leaflets would break the cath and would kill her. The only way to repair the hole is to open her up, we are not opening her up for such a small hole.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">But wait there is more. When Lil was a baby it was mentioned that she had mitral valve prolapse, but that it was so minor that it was nothing to concern ourselves with. So I filed it away, never truly forgetting about it, but doing my homework knowing, it isn't truly a huge defect, and she can live her life normally with it. Yet it was brought to attention again, and this time it was mentioned that it might be time we started talking a mechanical valve replacement there. All I could think is, "My child is going to have a bionic heart."</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">Why is this just now being brought up? Why hasn't it been seen on echos? Is it because her heart is backwards and really hard to see certain things? I have a million questions floating through my head and I have a month to wait until I can fire them off at Dr.R.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">No here comes the doozy, the dino whooper, gut puncher, I cried, I screamed, I cussed, I've been so angry I haven't been able to talk with anyone about this.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">The picture below is Lily's coarctation of the aortic arch, we fixed it during her first surgery with a vein from her wrist. The only time we worried about it was after her fourth surgery, right after we put the mechanical valve in. </span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">What you need to understand is, they don't make mechanical valves for children, they only make them for adult hearts. So here is a 2 year old little girl, getting a 19mm valve (the size of a grown petite female) put into her heart. So when the blood was being pushed up through the aortic valve into the CoArch, it started to balloon. It put a massive strain on it, also know as gradient levels, and we worried the work done on the arch wouldn't hold. But to our amazement, things leveled out and that was the end of it, or so we thought.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-TBLFD3rfFwI/WNWEU55JA0I/AAAAAAAABqQ/qggWQmtzBEMu23vPRBZji_0BL1vlH3OZwCLcB/s1600/IMG_2580.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://3.bp.blogspot.com/-TBLFD3rfFwI/WNWEU55JA0I/AAAAAAAABqQ/qggWQmtzBEMu23vPRBZji_0BL1vlH3OZwCLcB/s320/IMG_2580.JPG" width="240" /></span></b></a></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">So what you are looking at in the picture above , the marked areas in orange, is now the stenosis, aka narrowing. So the ballooning was done on the front end of the valve but everything comes to a crashing halt on the back end. We talked about if a stint was a possibility but it most likely wouldn't hold because it is at an opening. In normal patients they would worry about clotting, but in Lily, being on blood thinners, she would just throw the stint. So we would have to think of a different course of action.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">So you take all of these things and you put them together, you have to ask yourself is it time for an open heart surgery, or do we watch and wait. </span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">My anger comes into play with her arch, because that was a man made mistake. Please don't get me wrong though. I don't blame her doctors, I am not even blaming myself, even though God knows I did in the beginning, which is irrational. My anger resides in the fact that there is not enough research in pediatric congenital heart research. </span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">My daughter is a very small percentage of children that have a mechanical valve. Are you telling me this has never happened before? Are you telling me there was no studies done, telling use this was a possibility we took, when we put it in. 1 penny of every dollar donated to the American Heart Association goes to Pediatric Research. 1 PENNY!!! How is Gods name is that fair? </span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">We destroyed a fixed heart defect in a child, by trying to fix another heart defect that doesn't have enough research behind it. And I am angry because of it.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">This valve has caused this domino effect of problems. Like the pulmonary issues, do you want to know what took us so long to get back to see Lily after cath? I didn't find this out until the next day. Her lung partially collapsed and no one told us, NO ONE!!</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">I continually pray, to help ease this anger, to let go of this anger, because I detest it, but I know it won't go away until I get answers. 1 month, I have to wait 1 month. I better figure out an inner zen.</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">Peace and Love</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #cc0000; font-family: Verdana, sans-serif;">J</span></b></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-6175898899523606562017-03-21T13:12:00.002-07:002017-03-21T13:40:04.383-07:00Hazy lungs- Fevers- Home bound?<div style="text-align: center;">
<span style="color: #073763; font-family: "georgia" , "times new roman" , serif;"><b> I know I know, still no post about the findings from yesterday's cath, I am sorry, It was a long night, busy morning, and I am exhausted. We had an echo this morning, I have no idea the findings on that one, because Dr.B that did the cath yesterday is in Gilbert, so he is looking at the images over there, and Dr.Rhee is looking at the images 7 floors down, so I didn't actually get a say in if it looked better or not.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #073763; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://4.bp.blogspot.com/-1wKkczqmLBU/WNGGQvC2SYI/AAAAAAAABoY/xL0X-Ttp6q85De2HUfnn1sqd_qke7APKgCLcB/s1600/IMG_2575.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-1wKkczqmLBU/WNGGQvC2SYI/AAAAAAAABoY/xL0X-Ttp6q85De2HUfnn1sqd_qke7APKgCLcB/s320/IMG_2575.JPG" width="240" /></a><a href="https://2.bp.blogspot.com/-3XBD3oCif20/WNGGQ1smWpI/AAAAAAAABoc/elyoRciatWoe5Fn9bPWJyYLxxfuAKTwhwCLcB/s1600/IMG_2576.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-3XBD3oCif20/WNGGQ1smWpI/AAAAAAAABoc/elyoRciatWoe5Fn9bPWJyYLxxfuAKTwhwCLcB/s320/IMG_2576.JPG" width="240" /></a></b></span></div>
<div style="text-align: center;">
<span style="color: #073763; font-family: "georgia" , "times new roman" , serif;"><b>She also had an x-ray and it is showing her left lung is hazy. They told me that it should get better with lots of sitting up and coughing. Yet what worries me is the fever we are going home with along with the hazy lung but they aren't concerned. So after our third round of antibiotics, we are packing up our room and getting ready to break out of here and head home. She is going to relax and watch movies, while mommy gets to log in remotely, and work for the rest of the day from home. At least I am blessed and am able to work from home. My company was very understandable when it came to my daughter. Anyway, I promise I will post tonight about her Cath findings. </b></span></div>
<div style="text-align: center;">
<span style="color: #073763; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div style="text-align: center;">
<span style="color: #073763; font-family: "georgia" , "times new roman" , serif;"><b>Much Love,</b></span></div>
<div style="text-align: center;">
<span style="color: #073763; font-family: "georgia" , "times new roman" , serif;"><b>Jenna</b></span></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-13954863289226888342017-03-20T22:19:00.000-07:002017-03-20T23:39:40.468-07:00Processing & Low's<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>I know I said I would update this evening but after the day that we've had today, I am going to settle in for the evening with this lady. She woke up long enough to smile for and no sooner did I take it, did she fall back asleep. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://3.bp.blogspot.com/--1XUz83W7LU/WNCvF1h_j2I/AAAAAAAABoE/duDKsIHifskO18PDXkhLks3SBC-B20WzwCLcB/s1600/IMG_2570.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://3.bp.blogspot.com/--1XUz83W7LU/WNCvF1h_j2I/AAAAAAAABoE/duDKsIHifskO18PDXkhLks3SBC-B20WzwCLcB/s320/IMG_2570.JPG" width="320" /></a></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://1.bp.blogspot.com/-YZHaetctua8/WNCvFwMJNeI/AAAAAAAABoI/iXkWhHRRYbM8NEjpjt53XC-Z9kzFc2MQQCLcB/s1600/IMG_2572.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://1.bp.blogspot.com/-YZHaetctua8/WNCvFwMJNeI/AAAAAAAABoI/iXkWhHRRYbM8NEjpjt53XC-Z9kzFc2MQQCLcB/s320/IMG_2572.JPG" width="320" /></a></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>We had a bit of an episode shortly after being brought upstairs. She started in on a coughing fit, she had just had a drink of water, and her lung pressures aren't helping. We were on 2 liters of oxygen from the nose canulas at that point, when all of a sudden, she just couldn't catch her breath. I could see the look of fear in her eyes, knowing she couldn't move and not being able to breathe. Her lips turned blue, she turned grey, alarms went off, her sats dropped 69, 68, 67, and I stood helpless. This happened in under 3 minutes, and in those 3 minutes it seems like 30. Her nurse came rushing in, we bumped her back up to 5 liters of oxygen and she was hanging out there until about 5 minutes ago, we are giving it a test run to see if she will tolerate us going down to 2.5 liters. So far her sats are hanging in there at 98*, so we are happy. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>I just got the ok to feed her chicken broth, a tear ran down her cheek and when I asked her why she was crying, she said it was because she was so happy she finally gets to eat. She has been a trooper. It is going to be a long night in here for me, every time I sit down and get comfortable, she asks me for something. But you know what, I am OK with that, 100% OK with that. </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>As for the news we got earlier today, I am still trying to make heads or tails of it and see it objectively. My brain feels like mush right now, it really has been a long time since it has had so much thrown at it at once.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>Thank you to all for the texts, phone calls, and follow ups on facebook too. I haven't been the greatest at getting back to everyone. I do apologize, just know I have seen them all.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>Much love.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #4c1130; font-family: "georgia" , "times new roman" , serif;"><b>J</b></span></div>
<br />Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-53184412580037904122017-03-20T17:37:00.003-07:002017-03-20T17:37:38.457-07:00Update 3<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>She is getting her last few x-rays in cath lab right now, the doctors just came out to see us and fill us in on things. I will post in a bit, in depth the findings. We are staying over night.</b></span><br />
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Things are a little worse than we thought but that doesn't mean we have to rush right into fixing things right away. Overview so you know what to look forward to.</b></span><br />
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b><br /></b></span>
<br />
<ul>
<li><span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Coarctation of the aorta-her repair</b></span></li>
<li><span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Pulmonary pressures*</b></span></li>
<li><span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Mitral valve issues*</b></span></li>
<li><span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Coil's and Plugs</b></span></li>
</ul>
<div>
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>The bullet points with ** next to it are new issues. So stay tuned, I promise I will update soon, first I need to see my girl.</b></span><div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-pffwuhwk8X4/WNB1echgv9I/AAAAAAAABn0/nTyLDwUqPEkUM1033YuN-OXL4vpz2KRUQCLcB/s1600/IMG_2540.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b><img border="0" height="320" src="https://3.bp.blogspot.com/-pffwuhwk8X4/WNB1echgv9I/AAAAAAAABn0/nTyLDwUqPEkUM1033YuN-OXL4vpz2KRUQCLcB/s320/IMG_2540.JPG" width="320" /></b></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Thank you again to everyone for your continued thoughts and prayers. You have carried us through this day. So much love and thanks.</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b><br /></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>Jenna</b></span></div>
</div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-83247246422330907852017-03-20T15:02:00.000-07:002017-03-20T15:03:36.483-07:00Update 1 & 2<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"> Lily was in good spirits when we got here, she had her friend Tiptop and all was well. We watched the end of Cinderella and then part of Angry Bird, and then we started to panic. But first, look at this beautiful girl.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-LqrfeI_TJcU/WNBJNiNjUrI/AAAAAAAABnQ/hn_euGI5EIkqO7oi52G3JqPB8MPwAlpXwCLcB/s1600/IMG_2565.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><img border="0" height="320" src="https://4.bp.blogspot.com/-LqrfeI_TJcU/WNBJNiNjUrI/AAAAAAAABnQ/hn_euGI5EIkqO7oi52G3JqPB8MPwAlpXwCLcB/s320/IMG_2565.JPG" width="240" /></span></a></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-bXzYXLaKEO0/WNBJMbp3REI/AAAAAAAABnM/TuCJ0jbZoAAXBlsyQSuPWqztUaZO3u5OACLcB/s1600/IMG_2566.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><img border="0" height="320" src="https://3.bp.blogspot.com/-bXzYXLaKEO0/WNBJMbp3REI/AAAAAAAABnM/TuCJ0jbZoAAXBlsyQSuPWqztUaZO3u5OACLcB/s320/IMG_2566.JPG" width="240" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">I could stare at her little face all day long. </span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">So back to panicking, one minute she was fine, the next she had tears rolling down her bright red face, she started sweating really bad, her heart rate jumped quickly, so it was time for the pink drink. VERSED. If you haven't had it, well, lets just say, it makes you feel sleepy intoxicated or giggly intoxicated, depending on who you are. It takes the edge off and helps you relax, or in Lily's case, sleep. I think the fact that she didn't sleep to well last night, contributed to her falling asleep too. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-aVIJPSMhqTU/WNBJOFenQ0I/AAAAAAAABnY/dU8py8DyfY8YW3MC4nxE9DLcDsKXTmtagCLcB/s1600/IMG_2567.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><img border="0" height="240" src="https://4.bp.blogspot.com/-aVIJPSMhqTU/WNBJOFenQ0I/AAAAAAAABnY/dU8py8DyfY8YW3MC4nxE9DLcDsKXTmtagCLcB/s320/IMG_2567.JPG" width="320" /></span></a></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-RslhF5N3p7o/WNBJQKXN-TI/AAAAAAAABnc/b-aLxo17Kyg-OsslLVIgFT-YYQZq-dL8gCLcB/s1600/IMG_2568.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><img border="0" height="320" src="https://4.bp.blogspot.com/-RslhF5N3p7o/WNBJQKXN-TI/AAAAAAAABnc/b-aLxo17Kyg-OsslLVIgFT-YYQZq-dL8gCLcB/s320/IMG_2568.JPG" width="240" /></span></a></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">I got to go back to Cath Lab with her, you would think she wouldn't have fought at all but man did she fight!! She hated the mask and even half strength fought to take it off. Then all of a sudden it was like a light switch, and she was out.</span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">So now the actual medical side of it. Lily's mechanical valve was detaching right next to the coronary artery, The blood was back flowing around that area, they said it is something they see commonly in adults with mechanical valves. Because truth is, you don't see many kids with these valves, Lily is a small percentage, and an even smaller percentage to have it put in at 2. </span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">So the fixing solution....Yes you read it right, a fixing solution,...In cath!! As excited as I am, I have hesitance. </span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">They put a plug in it. I'm not sure what this plug looked like, I am going to have to go do some research, because I have no idea what exactly is happening, because even though this was talked about before she went into Cath, I had no time to do look into this. I'd like to know how long this is going to hold because a plug doesn't sound to promising when it comes to a growing child.</span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">They won't fix the VSD while in there, they said where it is located would cause more harm than good. I am not sure how I feel about this answer either. Needless to say, 2 weeks won't go by quick enough, so I can see Dr.Rhee and pick his brain and ask him my 10 million questions.</span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">For now, I sit here waiting for her to get out of Cath, because she's still not done, she's tolerating everything beautifully, so keep up the prayers, they are helping her so much. I have only cried once so far today, and by cry, a single tear ran down my cheek after I left the Cath lab, and got into the elevator with my husband. He held me in his arms an I was safe. To have my safe haven right now is helping my sanity, I just wish it helped my anxiety.</span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: Georgia, Times New Roman, serif;">I will update again soon</span></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-6904603049740353012017-03-20T06:53:00.001-07:002017-03-20T06:57:29.956-07:00Bold and Brave<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-lHssHztowwY/WM_bTtc8JvI/AAAAAAAABm8/D--xifDBqxEV7j1R8rDMlBgypFrZKry8QCLcB/s1600/IMG_2556.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-lHssHztowwY/WM_bTtc8JvI/AAAAAAAABm8/D--xifDBqxEV7j1R8rDMlBgypFrZKry8QCLcB/s320/IMG_2556.JPG" width="240" /></a></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: inherit;"><b>The dawn of this day has already approached and started before I was ready for it. Yet here are the things I am ready for.</b></span></div>
<div style="text-align: center;">
</div>
<ul>
<li><span style="color: #660000; font-family: inherit;"><b> I am ready for answers. </b></span></li>
<li><span style="color: #660000; font-family: inherit;"><b>I am ready for my girl to start feeling better.</b></span></li>
<li><span style="color: #660000; font-family: inherit;"><b>I am ready for my anxiety to stop.</b></span></li>
</ul>
<br />
<div style="text-align: center;">
<span style="color: #660000; font-family: inherit;"><b>We are bold and brave!</b></span><br />
<span style="color: #660000; font-family: inherit;"><b><br /></b></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: inherit;"><b>Her heart cath is at noon today, so we have to be there at 10. We were told to expect to stay the night because she is the second case of the day. I will post when they start, finish, and the findings they tell me today. They may not tell me all, but I will learn something.</b></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: inherit;"><b><br /></b></span></div>
<div style="text-align: center;">
<span style="color: #660000; font-family: inherit;"><b>Please keep Lilyana in your prayers today. This beautiful Warrior Princess is about to go and battle. I know it may be just a cath, but even a simple procedure is a lot to handle for her body.</b></span></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-49634229726790015882017-03-16T23:10:00.001-07:002017-03-16T23:10:12.787-07:00I shall believe<div style="text-align: center;">
Even if it's a lie, say it will be alright.</div>
<div style="text-align: center;">
In just 4 short days, we will know the extent of what is going on in my little girls heart.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
In 4 days, I might be able to breathe again, even if it's just for a second, while it is to inhale to sob.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
In 4 days, I will be sitting back in a hospital room, listening to my daughters heart on a monition.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
And I am not ready. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
How can I not be ready for a simple procedure? Yet a <a href="http://simmonsfamilyupdate.blogspot.com/">heart buddy</a> just had a heart transplant?</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
It makes my fears seem so small in comparison.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Lily is not in heart failure but her heart is sick. Her cardiologist told me not to let cath lab stop her procedure on Monday because of her cough. You see Lily has this horrible cough, if you heard her, you would think she was sick, but you see, she's not sick with a cold, it is her heart. It is the VSD, the hole is getting bigger and bigger and the blood is mixing, and causing her cough. Which I knew before seeing him, it was her father who was uneducated. I am the one who stays ahead of medical. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I've done so much research on her mechanical valve failing and the chances of it being the valve or her heart rejecting it per-say. The things you learn when you read medical documents, I could bore you with percentage rates and such. You see, this is how I calm myself, I research. </div>
<div style="text-align: center;">
<br /></div>
<div>
<div style="text-align: center;">
But one can only do so much research and then I am back to,</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Even if it's a lie, say it will be alright.</div>
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
My chest keeps tightening, I lay in her bed, I hold her baby dolls, and I just smell her, because I'm so damn afraid of what is to come and what we are to learn. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Research is good but research is bad....</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Even if it's a lie, say it will be alright, and I shall believe.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Come Monday I will be a pillar of strength, but right now, when the house sleeps, I sit here, with my head in my hands, and cry, because she was supposed to be ok, she wasn't supposed to have anymore surgeries, and I'm scared</div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com1tag:blogger.com,1999:blog-3693747345232394711.post-3077304166759688722017-03-03T22:18:00.004-07:002017-03-03T22:18:52.947-07:00Hand prints on the wall<div class="separator" style="clear: both; text-align: center;">
</div>
I wish I could say I was as strong as I once was, that I do not falter when I step but those would be lies. For six years I tucked away 2 years of chaos, 2 years of fears, 2 years of tears. We've lived in the moment, we've lived in the laughs, the fears, the tears. Tucking away the first 2 years of her life, never forgetting but not needing to worry about it anymore. The chances of another surgery were unlikely,so why focus on something with such a minute chance of happening? So I have watched my beautiful daughter grow into a beautiful young lady, listening to her dreams of being a baby nurse 3-4 days a week and an artist the rest of the week. I told her if she wants it, she can have it, all she has to do is reach for it and it is hers.<br />
<br />
So now here I am, wondering if I started hoping to soon, something I never allowed myself to do when she was a baby. Things were to uncertain back then to dream to far in the future. But here we are, things were certain, as certain as what was you or I,or so it seemed. The hope I once felt is slipping away from me, and I am stuck in a perpetual sense of anxiety and fear, with the occasional bouts of anger mixed in. Never in front of the kids mind you, but there are times I sink down to the floor clutching my chest, counting my breaths, humming a soothing lullaby, anything that will snap myself out of state of panic. Unfortunately it usually ends in tears, big fat ugly, sobbing tears, that wrack your body, that leave you feeling raw and vulnerable. Once the tears have passed, I pick myself up, ashamed I have let myself become over emotional, when she is still alive and well.<br />
<br />
Yet that is the thing, the sense of foreboding is I don't have much time left with her. To many, you will think me saying something like that is a curse, to those of you who have lost will tell me not to say such things. Yet I am telling you this is just a feeling that sits with me, it is a long story so I will keep it short. I have had dreams for years about Lily's life and how it would be. I even dreamed her father and I would divorce and that there would come a time I would yell at him in a hospital room, telling him he was the reason she was there, while my new husband was there with me.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-Gq_2W15F-tg/WLo_OB3tNLI/AAAAAAAABlc/zb8ZyE7WnZUZB-nTeHYZ5GeO7ycow81WQCLcB/s1600/unnamed.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://4.bp.blogspot.com/-Gq_2W15F-tg/WLo_OB3tNLI/AAAAAAAABlc/zb8ZyE7WnZUZB-nTeHYZ5GeO7ycow81WQCLcB/s200/unnamed.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily's hand print from my stairway wall</td></tr>
</tbody></table>
That actually came to pass, it was when she was hospitalized for her kidney infection. I can give you many instances when this has happened, dreams becoming reality.It would just take to long. There is a point to this story, hang in there. To the left you will see Lily's hand print, we did this at a <a href="http://hopekids.org/">Hopekids</a> event, I have one for each of my children and it goes up my stairs, I love it. Well, the other night I was walking down the stairs and it fell off, only to flutter to my feet in front of me. It left a really dark feeling in me, which I ignored, turning around, hung it back up, and continued on. Well, when I went to go back upstairs, sure enough, it had fallen off again.<br />
<br />
Now, 6 years ago, something like this happening, would it have disturbed me, yes, a bit, but I would have let it be. 6 years later, I don't remember how to pull myself up by my bootstraps, and something as trivial as my daughters hand print falling off the wall, sent me into a tailspin of emotions.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-KiG2xv1Km4w/WLo_Obt_B9I/AAAAAAAABlg/xI4feSKjSBUw-Z0hL3z5hBlpQYkBLYMFQCEw/s1600/unnamed%2B%25281%2529.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://2.bp.blogspot.com/-KiG2xv1Km4w/WLo_Obt_B9I/AAAAAAAABlg/xI4feSKjSBUw-Z0hL3z5hBlpQYkBLYMFQCEw/s200/unnamed%2B%25281%2529.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily's hand missing from the wall line up.</td></tr>
</tbody></table>
<br />
I was left looking at the line up of my children's hands, feeling as if my daughters just jumped out of the line up. Now I know that sounds irrational, that is the crazy PTSD talking, but that was exactly how I felt, and oh God, bile rose in my throat. I wish I could say I was stronger.... I wish I could say I didn't falter in my steps.....but falter I did and strong I was not. I had my moment...I broke down, fell apart, but then pulled myself back together.<br />
<br />
So today at therapy I brought this up and my therapist didn't brush me off, She listened to me and said she understands what I am saying of premonitions and such, because she's experienced moments of them too. But she put a spin on it and this is why I love her, and why you will too.<br />
<br />
She said, "Jenna, do you think maybe it could have been a sign in, here is a friendly slap from Lily to remind you it has been almost a month since her appointment and you haven't heard anything from cardiology?' Maybe it was just Lily saying, "Mom, please advocate for me, do what you do best."<br />
<br />
So I did call cardiology today and left messages and text cardiology to find out Dr.R was in procedures all day. I know they don't see her as a high priority case right now, but Lily's heart was fine back in August 2016. 6 months was all that it took for us to flip so suddenly, and as Dr.R knows, she can backslid further in a blink of an eye. I have to trust my instincts, which are very rusty, add to it she's not with me all the time either, all I can do is stay on top of clinic to get her to cath.<br />
<br />
So still, no date until cath, but I am hoping we will have something by the end of next week. I don't think my anxiety can handle much more of this.Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-48254208152870748592017-02-24T08:23:00.001-07:002017-02-24T08:23:29.743-07:00We're Back!!!We're back!! I thought I had retired this blog. That is why I stopped posting on here, very unceremoniously, which I apologize for by the way, I figured Lily was so healthy, there was no reports. We went to the cardiologist every 6 months, got the all clear for another 6 months, wash rinse and repeat.<br />
<br />
Now don't get me wrong, we have had some ups and downs medically, such as a kidney infection that hospitalized her. Her INR goes up and down so frequently, and sometimes it shoots so high she becomes a fall risk, that we have to weigh our options of safety. But compared to what used to be, that is nothing, speed bumps. Well, about 2 years ago now, maybe a year and a half, we noticed a hole (VSD) in her heart. At first Dr.R started wondering if she had an infection of the heart, there were so many things thrown around because you don't just get a "new" hole in your heart out of no where. So I went home, stressed, for the first time in years. Cried for the first time in years over her cardiac conditions, then I started thinking about things because it just didn't make sense to me. Well that night I had a dream that took me back to her 4th open heart surgery. Dr.C was telling me how when he was putting in her mechanical valve he noticed a very small hole, but not big enough for him to close. He said it would have done more damage at that time do it, because of how she develops scar tissue. He told her father and I it should close on its own.<br /><br />So in the morning when I awoke, I dug out the journal I kept from her hospital days, found the entry from her 4th surgery, and sure as the sky is blue, I had it written down. I emailed her cardiologist immediately. (Her surgeon retired, and the hospital she had all her surgeries at had merged all its patients with the children's hospital, so they didn't have all those notes.) So he requested everything, I received and email later that same day telling me I was Clara Voyant and thanked me for keeping that journal as it helped.<br /><br />So now, fast forward to today. Up until recently, Lily, even though there was that hole, everything was fine, it was there but it wasn't bugging anything. She does have what is called Sick Sinus Syndrome or SSS, but it isn't in a constant state.SSS is pretty a uncommon heart rhythm disorder. It is not specific to a disease, but rather to a group of symptoms that indicate the sinus node, the hearts natural pacemaker is not functioning properly. How did this happen? Well, Lily had an ablation after her 3rd open heart surgery because of her heart arrhythmia, and it weakened that node. Now, when her heart is at a rest rate it dips to a dangerously low rate at some points, it is more common when she sleeps. But it isn't a constant. So we watch, we wait, and one day she will need a pacemaker to keep her heart beating, but no yet.<br />
<br />
The hole in her heart started out at .5mm (Think mechanical pencil lead). That's not a big hole, that is why we watched and waited. 6 months ago we were fine, but something shifted, and we think it has to do with her St.Judes mechanical valve. Dr.R thinks it is either 1: to small; which is very unlikely because the valve is a 19mm valve, which is the size of an adult female. OR 2: the valve itself is failing. She has leaking around the valve, which is screwing up the pressures in her heart. We have to watch those carefully because of the repair she has. The hole has gotten bigger and now when the heart is constricting, the blood not only goes through the hole, it gets pulled back, causing a back flow, mixing blood. The hole is still relatively small, I wasn't given a size this last time though.<br />
<br />
Our course of action is a cath and a transesophageal echocardiogram. This is to get better views of what is going on in there. At which point they will take all that information to their surgery conferences and start formulating our next steps. If the valve needs to be replaced like he thinks it needs to be, she will have to have another OHS, she will go on bypass, and that scares me. Lily's heart has a really, really hard time restarting. Remember that SSS I was talking about, that comes into play here. I don't want her having a OHS being the reason she has to get a pacemaker.<br /><br />I am a nervous wreck, as I always am, I will be until it comes time to walk through the fire. On the day of procedures and surgeries, I am so calm, and I know it is God's grace. He'll see me through this, he'll see her through this. And when we come out on the other side, we will be stronger for it, is just the passing storm and learning to dance in the rain again. It's been so long, I guess I've forgotten how.<br />
<br />
I will update as soon as we get news of a date, or anything happens with Lily.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-5KCqtdxkT7w/WLBP0L3NlHI/AAAAAAAABlM/L8zWXPqelkEaqZowudgmLbCw4AcuvDyPACLcB/s1600/16508013_10154936120792777_5565668076445706226_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-5KCqtdxkT7w/WLBP0L3NlHI/AAAAAAAABlM/L8zWXPqelkEaqZowudgmLbCw4AcuvDyPACLcB/s320/16508013_10154936120792777_5565668076445706226_n.jpg" width="240" /></a></div>
Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-57440966101503732422011-12-21T21:44:00.001-07:002011-12-24T13:47:10.055-07:00Blessings of a mother<div style="text-align: left;"><span style="text-align: center; "> My babies. My existence, the reason I am a better person. </span></div><a href="http://1.bp.blogspot.com/-w0avwVPVzLk/TvQFq2XXCGI/AAAAAAAABjw/riCBup-mXPY/s1600/381262_10150456195387777_506907776_8229674_1984098644_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://1.bp.blogspot.com/-w0avwVPVzLk/TvQFq2XXCGI/AAAAAAAABjw/riCBup-mXPY/s320/381262_10150456195387777_506907776_8229674_1984098644_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5689178462981916770" /></a>My Elaina, 7 months old, starting to walk. My sweet angelic girl, I run my hand down her chest and feel the difference in my girls. Smooth skin, not marred by scars, no wires holding together her chest, just smoothness. I have been able to do everything with her, that I was not able to do with her older sister. It brings me such joy and such sadness, I've never felt so many emotions before when it comes to my children. I have been blessed with 2 beautiful girls, what more can a mother want?<div style="text-align: center;"><br /></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://3.bp.blogspot.com/-VzZsnXitDw8/TvQDM0q1isI/AAAAAAAABjU/fGLyS50hTGs/s320/377872_10150457699022777_506907776_8231350_199668770_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5689175748107406018" />Oh Lucas....my little Loogie....yes, we went there, he got the nickname after he got sick and was coughing up "Goop" as he calls it. I told him what it was and that it resembles his name....he didn't like that very much, nor did he find it as funny as I did. Yes, I am horrible, I got a chuckle at my sons expense, but I the mom, I am allowed, if I wasn't, no one would be able too. My not so Little Lucas, is still a BIG ball of energy, I think instead losing it, as we all hoped when he was a toddler, he has just gotten more. I think he back stores it in all honesty. The kid can run and run for hours, rivals the energizer bunny, now that I think of it. I can't believe that he is 8, I remember the day Chris and I drove home from the hospital with him, he was screaming in the back, and Chris looked at me and said, "Only 17 years, 363days left before we can kick him out." All I thought is "I only have 17 years and 363days to make him a momma's boy and not want to leave home." Yes I know, bad, but that's how much I NEVER want my kids to leave.<br /><a href="http://3.bp.blogspot.com/-MPPucFSprHA/TvQDMpXmdfI/AAAAAAAABjE/-NmMwYWDdyE/s1600/nsqayveb10y6fmkouwhnns.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="http://3.bp.blogspot.com/-MPPucFSprHA/TvQDMpXmdfI/AAAAAAAABjE/-NmMwYWDdyE/s320/nsqayveb10y6fmkouwhnns.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5689175745073935858" /></a>Lilyana Annsaleigh, a unique name, for a uniquely special girl. I love knowing she has finally evened out and is doing so well. To know we are done with surgeries for the remote future, brings such joy to my heart. I know the future may change it all, but we are in the here and now. Lily, who once could roll with the punches sorta speak, now gets the smallest owwie and screams and cries like her limb is hanging by a thread, and that whatever got hurt, needs to be amputated. Seriously, not joking, I hate to say it, but she is such a baby. Oh and the drama, and the attitude. Lord help me when she hits her teen years. She rivals me in the drama department. My family has affectionately nick named me <a href="http://en.wikipedia.org/wiki/Sarah_Bernhardt">Sarah Bernhardt</a>, I shudder to think who they will name Lily after, once they find her flares are worse then mine. All in all though, she may be dramatic, and possibly could win an Oscar for her performances, I try to remind myself, I could be living without them completely. So I take them in stride and only battle the ones I deem absolutely necessary. My Princess Tom-boy, you will still find hotwheels in her purse, next to her lipgloss and necklaces, I want nothing more, then to curl up on the couch with her, and snuggle her smells and listen to her heart tick, she on the other hand, would rather run around and play hide and seek....if only she would realize, I can just close my eyes and follow the tick...thankfully the boys haven't figured that one out yet, that's just going to suck for her when they catch on.<br /><a href="http://2.bp.blogspot.com/-pK4pR8yQD00/TvQDMYtmyZI/AAAAAAAABi4/u3NrZeVO6Wo/s1600/nsqayv0manrzh0ohk8exsv.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="http://2.bp.blogspot.com/-pK4pR8yQD00/TvQDMYtmyZI/AAAAAAAABi4/u3NrZeVO6Wo/s320/nsqayv0manrzh0ohk8exsv.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5689175740602829202" /></a>Austin, sweet sweet Austi boy. He is the joker of my little bunch, always quick on the draw with quirky sayings and comebacks. He defiantly brings a whole new meaning to "Kids say the Darnedest" But no matter how much he jokes, he is the most loving, sweet hearted little boy you will ever meet. I can say "No" to all my children and stand my ground, expect for him. His eyes, they will get you ever time. Such expressive eyes, just like mine. We may smile on the outside, but our eyes say what we won't. Of all my children, his temperament reminds me the most of me. I can't wait to see what kind of young man he grows up to be, but I am in no hurry, I am cherishing the time I have with him as a little guy. I know there will come a day where he will ask me to drop him off around the block and not kiss him in public. So for the time being, I will enjoy every ounce of attention I get from this little man. He is my momma's boy through and through, he will gladly tell you so himself.<br /><a href="http://1.bp.blogspot.com/-1YS0pX53gPg/TvQDL2dz0TI/AAAAAAAABis/hxLVkq-jct0/s1600/390636_2457221710163_1240713908_32429879_1962653161_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://1.bp.blogspot.com/-1YS0pX53gPg/TvQDL2dz0TI/AAAAAAAABis/hxLVkq-jct0/s320/390636_2457221710163_1240713908_32429879_1962653161_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5689175731409768754" /></a>There is nothing better in this world then my children. They are my first waking thought, on my mind throughout the day, and the last one before I drift off slumber land. I am a mother of 4 of the best kids, 4 of the smartest kids. Lucas is in AP classes, Austin is on track to be placed in them next year, and Lily is WAY ahead of the curve. She was ready for Kinder this year, but she still has another year to wait. This holiday season has been very hard, I loved to decorate with the kids, loved seeing their face as we plugged the lights in after hanging them. I miss the sounds of jumbled and butchered Christmas carols, being sung around the house. Giggling with them as they sing "Jingle Bells, Batman Smells..." You would think the pain lessens with time, that it wouldn't hurt so bad because they have been away from me for over a year now, but it hasn't. I still hear their cries when they aren't here. I know when they've had bad days before they tell me about them. I am their mother, I will always have these feelings. They aren't with me because their fathers "situation" is supposedly better then mine. They aren't with me because of my stupidity and kindness. I was to nice in court, I didn't tell the judge about all of their dads game playing, hours of neglect to them because of it. Not trusting him to watch after the kids while I went to the grocery store because he was to absorbed in his games. Now, he sticks the boys in front of the TV with games, while he plays his, instead of playing with them. Lily runs and does her own thing with Grandma, instead of with mommy....I got the crap end of the stick....because I didn't fight dirty....Not because I was not a good mom. I may have been a crappy wife, but I was and am an awesome mom. I have no guilt when it comes to mother, I know I have done nothing wrong in raising my babies, other then us not being a complete family anymore. Yet I know its for the best, because there are days I want nothing more then invest in a good frying pan, you know, like the ones in Tangled....."Frying pans, who knew, right?"...yup...that's me...<div><br /></div><div>I look forward to my weekends with the kids, even when they wake up at 6:30 in the morning, at least I have them here to wake me up and be with me. I love them more then words will ever be able to explain for me. They are my world, my reason for being, they are my life. I love you Lucas Christopher, Austin Nicholas, Lilyana Annsaleigh, and Elaina Elizabeth-Jeanine. You will always be my babies, no matter how big you get. </div><div><br /></div><div>Love Hugs and Blessings</div><div>Life Unscripted</div>Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-78711261265180971082011-11-22T21:00:00.003-07:002011-11-22T21:28:01.293-07:00Love is a many Splendid thingMany don't see love for what it really is. Many say it's what they are looking for when it comes to a relationship. That they just want to be loved. Many take love for granted, toss the word around because they feel its supposed to be used, like with family or friends. <div><br /></div><div>The Webster's Dictionary definition of the word<div><br /></div><div> <b>1</b><span class="ssens" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 20px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><em class="sn" style="font-style: normal; font-weight: bold; ">a </em><em class="ssn" style="font-style: normal; ">(1)</em> <strong>:</strong> strong affection for another arising out of kinship or personal ties <span class="vi"><maternal em="">love for a child></maternal></span> </span><span class="ssens" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 20px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><em class="ssn" style="font-style: normal; ">(2)</em> <strong>:</strong> attraction based on sexual desire <strong>:</strong> affection and tenderness felt by <a href="http://www.merriam-webster.com/dictionary/lovers" class="formulaic" style="color: rgb(41, 101, 199); text-decoration: none; ">lovers</a> </span><span class="ssens" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 20px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><em class="ssn" style="font-style: normal; ">(3)</em> <strong>:</strong> affection based on admiration, <a href="http://www.merriam-webster.com/dictionary/benevolence" class="d_link" style="color: rgb(41, 101, 199); text-decoration: none; ">benevolence</a>, or common interests <span class="vi"><<em>love</em> for his old schoolmates></span></span><div class="sblk" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 20px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; "><span class="ssens"><span class="break" style="display: block; height: 10px; "></span><em class="sn" style="font-style: normal; font-weight: bold; ">b</em> <strong>:</strong> an assurance of affection <span class="vi"><give her="" my="" em="">love></give></span></span></div></div><div class="sblk" style="text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><div class="snum" style="font-size: 13px; line-height: 20px; font-family: Verdana, Arial, Helvetica, sans-serif; float: left; font-weight: bold; ">2</div><div class="scnt" style="font-size: 13px; line-height: 20px; font-family: Verdana, Arial, Helvetica, sans-serif; margin-bottom: 10px; margin-left: 20px; "><span class="ssens"><strong>:</strong> warm <a href="http://www.merriam-webster.com/dictionary/attachment" class="d_link" style="color: rgb(41, 101, 199); text-decoration: none; ">attachment</a>, enthusiasm, or devotion <span class="vi"><<em>love</em> of the sea></span></span></div><div class="scnt" style="font-size: 13px; line-height: 20px; font-family: Verdana, Arial, Helvetica, sans-serif; margin-bottom: 10px; margin-left: 20px; "><span class="ssens"><span class="vi"><br /></span></span></div><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; ">I on the other hand, leave the word open for interpretation, one that is undefined. I have the general definition of love covered and then some. I love to my full capacity. If I'm going to do something, I will give it my all, even if I fail, I would rather fail trying, then giving up before I even begin. </div><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; ">I love with passion, with over enthusiasm, with reckless abandon. I love things big and small, God's creation, I love it all. Look...I am a poet, and I didn't even know it. <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Ok</span> that's a lie, but still, joking aside. Love isn't a word, it is a feeling. With each heart beat, mine throbs while my children are away from my side, and dances when they are asleep under my roof. With each heart beat, mine races when my lips are met by that of my love. Love leaves me warm inside, it makes me feel as if I could walk across water, or dance on clouds. Love leaves my thoughts jumbled as it surrounds me in a blanket of warmth. The smile that never leaves my face when I hear "Mom I love you" or "Jenna I love you." I love and am loved in return. Love leaves you with a high, a heart swelling, gut twisting high. Yet it can break you.</div><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; ">When something you love tells you or treats you with indifference, or harshly, it's like the wind tearing the petals off a flower. It leaves you feeling naked and exposed. I cried this past weekend because of harsh words from my son. I know he said them out of anger of being hurt himself, but it doesn't make it any easier to hear them. I know they weren't truth, yet the old saying "Sticks and stones may break my bones, but your word can't hurt me." echoed through my head. Who came up with that saying? They must not have had a loved one say something hurtful to them. Bruises heal quickly, verbal words stay with you and echo when the world is the quietest. </div><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; ">Now has this changed my love for my son? Of course not, never, nothing ever will stop me from loving him. Until my last breath and I depart this earth, I will love with every fiber of my being. I will let it continue to pulse through me. I will embrace the fast heart beat, the dancing butterflies, the walking on water, playing in the clouds, heart swelling with pride, feeling that comes with it. Because even with the heart wrenching moments where it drops you to your knees, and hurts, I would rather have known the feeling of it, then to have lived my life without it. </div><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; ">I love you Lucas Christopher, I always will, even when you are mad at me. One day you will understand it all. Until then, try not to be to hard on this momma of yours. </div><div class="scnt" style="margin-bottom: 10px; margin-left: 20px; ">Love Hugs and Blessings~ Life Unscripted</div><div style="font-size: 13px; line-height: 20px; font-family: Verdana, Arial, Helvetica, sans-serif; "><span class="ssens"><span class="vi"><br /></span></span></div></div><div class="sblk" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 20px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "></div></div></div>Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com0tag:blogger.com,1999:blog-3693747345232394711.post-29558615412420136082011-11-17T03:58:00.010-07:002011-11-17T05:09:04.236-07:00What is Life Unscripted? (The face of a new blog)<div style="text-align: center;">Welcome to the new revamp of Lily's blog. Seeing Lily is on such an even road, I felt the need to redo everything on here. I stopped blogging for some time because I felt there was nothing to blog about when it came to Lily's medical anymore. That's what this blog was used for, a place for me to let it all out when life became so chaotic with Lily's heart. Now here we are, coming up to 2 years since her last open heart surgery, and if you never met her, you would never know she had ever had her heart repaired or that we almost lost her at one point. So seeing we are at such a huge milestone marker, I figured in with the new, and out with the old.</div><div style="text-align: center;"><div style="text-align: center;"><br /></div><div style="text-align: center;">Welcome to</div><div style="text-align: center;">Life Unscripted</div><div style="text-align: center;"><br /></div><div style="text-align: center;">To those who have no idea what is going on these days, as it has been so very long since updating on here. I am a newly divorced mom, our divorce was finalized 2 days after our 8 year anniversary. I'm not sad that it is over, but I am very sad with how it all ended. I miss my babies greatly. Every night that I go to sleep without them, is another day lost, a day I can't regain of their babiness. A day of smiles, laughter, tears, tantrum....I can't get recall them. So for the 3 days a week I get them, 3 weekends out of the month, I embrace with open arms. I cover them with kisses, until they are sloppy wet. I suffocate them with hugs, until they feel like the stuffing is going to pop out. And I snuggle them with loving, surround them with tenderness, and nothing more then good ole' mom. Late at night, when everyone is asleep, I sit on the floor of their room and close my eyes and listen to their soft snores and even breathing and I weep. I cry for everything I took away from them, yet I remind myself of all they have gained. A mother and father who no longer yell and scream in front of them. They act out less now, then when we were together. There is no more tension, there is just peace. Lucas has began to understand it, Lily still doesn't understand why mommy and daddy aren't living together anymore, she is always begging me to come sleep over at her house.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Then there is my sweet Austi boy, so very much like me, taking everything in, the quietest of the bunch, he really gets it. He curled up into my lap on one of my first weekends of getting visitation with them, after the court proceedings. We sat and were watching tv, he then looked up at me and said, "Momma, I miss you." "I miss you too Austi" "Daddy doesn't snuggle with me like you do." "I'm sorry, have you asked?" "No, Daddy is always playing his game." "You should tell him you want to snuggle." "He's always says later, but it's never later." "Have you asked when he's not playing games?" "He's always playing games, like when we lived up at Broadstone. Is that why you don't love daddy anymore momma? Because he was always playing games?".......</div><div style="text-align: center;"><br /></div><div style="text-align: left; "><div style="text-align: center;">Oh sweet Austi boy.....If I only knew how to answer that question. Were games the downfall to our marriage, yes very much so, and no. But how do I answer that in a way a 5 year old understands it. He's grown up very quickly, or maybe he's always been the grown up one of the bunch. All I know is snuggles with him after that conversation have always meant a little bit more. Lucas is so big and independent, he would rather do his own thing, then snuggle. Lily has so much energy, and has life by the "horns" sort of speak, that you can rarely get her to calm down long enough to cuddle with you. But Austin, most days, he wants to curl into your lap and be loved on while having conversation's.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">I wish Chris would realize, they are only children once, you can't have a do over. He is going to blink and they will be married with a family of their own. But that's not my problem anymore, yet it very much is. It affects my babies daily and it breaks my heart. He hasn't changed a bit, and yet, he is a whole different person then the young boy I married 8 and a half years ago.</div></div><div style="text-align: center;"><br /></div><div style="text-align: center;">Now lets rewind back to me sitting and listening to them snore and breathe while sleeping. I don't always cry, most of the time I sit and pray. I reflect on what I have, the good, my shinning lights through my storm clouds. My children are my ray of happiness, they always have been. When they are all together, I just want time to stand still. If life ever had a slow motion or pause button, my weekends with the kids, would be the times I would use it. Now please don't get me wrong, my children aren't angels. They still drive me up the wall, they still get time outs and toys taken away. We have stern talking's, early bed times, and groundings. I don't yell as often now at the kids to get their attention, but they are testing me more right now, to see how much I am willing to bend, seeing they aren't with me all the time. As much as I want to be that fun mom, I know I don't have to be in order for my kids to want to come over. Every night I talk to them on the phone we count down the days until we see each other again. We talk about what we are going to do, what movies we will watch, what foods we will have to eat. Then we say our night time prayers.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">I was all my kids knew, I was their waking face, their teacher, their nurse for owwies, their cook for meals, their jungle gym for play, and their voice of reason. I was their last face they saw every night before falling asleep and I was their blanket replacer in the middle of the night when they lost them. Now I am nothing more then a night time call to review their day, then say prayers. I am the weekend mom.......but I guess...that's just life right now....thank goodness it's unscripted, so I have a chance to change the coming. That's what I have to look forward to, is one day things will change. Just in the mean time, I will take it one day at a time like always.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Now, to wrap this all up, here are some pictures.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">My first good picture of all 4 of them</div></div><a href="http://2.bp.blogspot.com/-3ibiLO82yOw/TsT3guGZicI/AAAAAAAABig/HKqrNf1hnRE/s1600/309694_10150308696087777_506907776_7572700_8091141_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 224px; height: 400px;" src="http://2.bp.blogspot.com/-3ibiLO82yOw/TsT3guGZicI/AAAAAAAABig/HKqrNf1hnRE/s400/309694_10150308696087777_506907776_7572700_8091141_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675933571896412610" /></a><div style="text-align: center;">The Husker Crew<br />Lily, Austin, Lucas, Elaina, Rick, Skyler</div><a href="http://1.bp.blogspot.com/-9Sn9BbSK-gY/TsT3ZHYmt9I/AAAAAAAABiU/Do7rL9sjYas/s1600/383959_10150378983547777_506907776_7954786_2099091068_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="http://1.bp.blogspot.com/-9Sn9BbSK-gY/TsT3ZHYmt9I/AAAAAAAABiU/Do7rL9sjYas/s320/383959_10150378983547777_506907776_7954786_2099091068_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675933441244706770" /></a><br /><a href="http://1.bp.blogspot.com/-S95tTEOmjs8/TsT3RnHAI8I/AAAAAAAABiM/7YXcyv2VLqg/s1600/388036_10150380500292777_506907776_7966641_1357935356_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 226px; height: 320px;" src="http://1.bp.blogspot.com/-S95tTEOmjs8/TsT3RnHAI8I/AAAAAAAABiM/7YXcyv2VLqg/s320/388036_10150380500292777_506907776_7966641_1357935356_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675933312321856450" /></a><br /><a href="http://1.bp.blogspot.com/-rD1zF8FgdIg/TsT3Rl2UxvI/AAAAAAAABh4/FN4bdL03-Ik/s1600/388278_10150380527652777_506907776_7967013_383242535_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="http://1.bp.blogspot.com/-rD1zF8FgdIg/TsT3Rl2UxvI/AAAAAAAABh4/FN4bdL03-Ik/s320/388278_10150380527652777_506907776_7967013_383242535_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675933311983470322" /></a><br /><a href="http://1.bp.blogspot.com/-TVclC3ZbfTo/TsT3RROJwzI/AAAAAAAABhw/Aazzy9jikk8/s1600/387115_10150380490732777_506907776_7966496_1515978829_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://1.bp.blogspot.com/-TVclC3ZbfTo/TsT3RROJwzI/AAAAAAAABhw/Aazzy9jikk8/s320/387115_10150380490732777_506907776_7966496_1515978829_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675933306446267186" /></a><br /><a href="http://2.bp.blogspot.com/-edSAgiO4V10/TsT26UjKgqI/AAAAAAAABhg/KXIOE4bitKU/s1600/383873_10150380520982777_506907776_7966928_529538063_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://2.bp.blogspot.com/-edSAgiO4V10/TsT26UjKgqI/AAAAAAAABhg/KXIOE4bitKU/s320/383873_10150380520982777_506907776_7966928_529538063_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932912202711714" /></a><br /><a href="http://3.bp.blogspot.com/-6pDm0RC8kUY/TsT26DCMeUI/AAAAAAAABhY/D8x1975425I/s1600/378607_10150380508067777_506907776_7966675_983036223_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://3.bp.blogspot.com/-6pDm0RC8kUY/TsT26DCMeUI/AAAAAAAABhY/D8x1975425I/s320/378607_10150380508067777_506907776_7966675_983036223_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932907501025602" /></a><br /><a href="http://4.bp.blogspot.com/-Jh73BNnSu3I/TsT25QogohI/AAAAAAAABhQ/AkEgHtLRVhI/s1600/376631_10150406446592777_506907776_8082996_562859993_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://4.bp.blogspot.com/-Jh73BNnSu3I/TsT25QogohI/AAAAAAAABhQ/AkEgHtLRVhI/s320/376631_10150406446592777_506907776_8082996_562859993_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932893971522066" /></a><br /><a href="http://1.bp.blogspot.com/-wnu-dSOmHNo/TsT25NfKvHI/AAAAAAAABg8/4slsUr4zWyM/s1600/374974_10150380561307777_506907776_7967596_1619484796_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://1.bp.blogspot.com/-wnu-dSOmHNo/TsT25NfKvHI/AAAAAAAABg8/4slsUr4zWyM/s320/374974_10150380561307777_506907776_7967596_1619484796_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932893127031922" /></a><br /><a href="http://1.bp.blogspot.com/-EPkuwl8owfQ/TsT25Ge2BBI/AAAAAAAABg0/tGl4ZOMag_Q/s1600/318619_10150323397127777_506907776_7666726_457867469_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://1.bp.blogspot.com/-EPkuwl8owfQ/TsT25Ge2BBI/AAAAAAAABg0/tGl4ZOMag_Q/s320/318619_10150323397127777_506907776_7666726_457867469_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932891246625810" /></a><br /><a href="http://2.bp.blogspot.com/-FF6M8IZi3Fo/TsT2m1NA_GI/AAAAAAAABgo/uzogqY_zonQ/s1600/317521_10150380495282777_506907776_7966570_1303502106_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://2.bp.blogspot.com/-FF6M8IZi3Fo/TsT2m1NA_GI/AAAAAAAABgo/uzogqY_zonQ/s320/317521_10150380495282777_506907776_7966570_1303502106_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932577370799202" /></a><br /><a href="http://2.bp.blogspot.com/-iZVuCP_s_eU/TsT2mqtl3aI/AAAAAAAABgc/tY8sfJj-ffc/s1600/313067_10150406444112777_506907776_8082993_1964004158_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 212px; height: 320px;" src="http://2.bp.blogspot.com/-iZVuCP_s_eU/TsT2mqtl3aI/AAAAAAAABgc/tY8sfJj-ffc/s320/313067_10150406444112777_506907776_8082993_1964004158_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932574554643874" /></a><br /><a href="http://2.bp.blogspot.com/-95fnzuaZMOw/TsT2mVmaHNI/AAAAAAAABgQ/IQeefan8sUA/s1600/312048_10150380516437777_506907776_7966799_834050897_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="http://2.bp.blogspot.com/-95fnzuaZMOw/TsT2mVmaHNI/AAAAAAAABgQ/IQeefan8sUA/s320/312048_10150380516437777_506907776_7966799_834050897_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932568887368914" /></a><br /><a href="http://2.bp.blogspot.com/-l9za91qsfR4/TsT2l4Y8_2I/AAAAAAAABgI/k0fmL0PaP4w/s1600/308184_10150380503127777_506907776_7966653_992127747_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 320px;" src="http://2.bp.blogspot.com/-l9za91qsfR4/TsT2l4Y8_2I/AAAAAAAABgI/k0fmL0PaP4w/s320/308184_10150380503127777_506907776_7966653_992127747_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932561046306658" /></a><br /><a href="http://1.bp.blogspot.com/-7Bu3L381vYM/TsT2lgY0BMI/AAAAAAAABf4/9PHTEKjO-7o/s1600/302607_10150389429587777_506907776_8021483_1145471090_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-7Bu3L381vYM/TsT2lgY0BMI/AAAAAAAABf4/9PHTEKjO-7o/s320/302607_10150389429587777_506907776_8021483_1145471090_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932554603267266" /></a><br /><a href="http://3.bp.blogspot.com/-4RmVgSpBVsU/TsT2PfwnIkI/AAAAAAAABfk/mqYjYWTVKdc/s1600/307270_10150389428572777_506907776_8021480_568276410_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-4RmVgSpBVsU/TsT2PfwnIkI/AAAAAAAABfk/mqYjYWTVKdc/s320/307270_10150389428572777_506907776_8021480_568276410_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932176477528642" /></a><br /><a href="http://3.bp.blogspot.com/-Fi3YKsXu4L4/TsT2PCHYZhI/AAAAAAAABfc/hiC1oiVcIsg/s1600/305114_10150406438112777_506907776_8082989_495950665_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="http://3.bp.blogspot.com/-Fi3YKsXu4L4/TsT2PCHYZhI/AAAAAAAABfc/hiC1oiVcIsg/s320/305114_10150406438112777_506907776_8082989_495950665_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932168519968274" /></a><br /><a href="http://1.bp.blogspot.com/-gvstruZ496U/TsT2O_9n-2I/AAAAAAAABfQ/iYmP56v1rUo/s1600/303833_10150360346247777_506907776_7854819_1036351665_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="http://1.bp.blogspot.com/-gvstruZ496U/TsT2O_9n-2I/AAAAAAAABfQ/iYmP56v1rUo/s320/303833_10150360346247777_506907776_7854819_1036351665_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932167942175586" /></a><br /><a href="http://4.bp.blogspot.com/-VIIOE5ETfG0/TsT2ObjcUuI/AAAAAAAABfE/E6sa8tEqSK8/s1600/297126_10150308700542777_506907776_7572732_6205670_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 179px; height: 320px;" src="http://4.bp.blogspot.com/-VIIOE5ETfG0/TsT2ObjcUuI/AAAAAAAABfE/E6sa8tEqSK8/s320/297126_10150308700542777_506907776_7572732_6205670_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932158168683234" /></a><br /><a href="http://4.bp.blogspot.com/-XHPCf781Jx4/TsT2Ob_4KdI/AAAAAAAABe4/UVPDxLxzwTM/s1600/296255_10150294003512777_506907776_7446571_8191912_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 179px; height: 320px;" src="http://4.bp.blogspot.com/-XHPCf781Jx4/TsT2Ob_4KdI/AAAAAAAABe4/UVPDxLxzwTM/s320/296255_10150294003512777_506907776_7446571_8191912_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5675932158287948242" /></a><div style="text-align: left;"><br /></div><div>Love Hugs and Blessings. ~Life Unscripted </div>Life Unscriptedhttp://www.blogger.com/profile/16362489208922734342noreply@blogger.com2