Saturday, February 13, 2010

Do you have time for CHD AWARENESS?

I had written a blog in my head as I was driving the other day. It was going to be a carefree comical one about driving and hand gestures. After being flipped off, break checked (they seriously didn't read that blog) not shown appreciation at my courtesy, I decided I wanted to look into the history of hand gestures. When did the middle finger become taboo and when was the raise of the hand while driving considered a thank you? But after the turn of events that day, the subject at hand became a more serious one.

As this is my 2nd Heart Awareness year, I have been meaning to write a blog in tribute to it. I did one for Lily last year, I retold her story to the best of my ability, I was amazed at how well it was taken to. It became the number one read blog on cafemom at the time. It opened many's eyes to a world they never knew existed, it rang home for many who are in the world I dance in, and forced others who have turned a blind eye to the truth and realness around them, to open their eyes and see the heartache and reality this all causes.

What causes you may ask? Are you a new comer to our blog, if so, welcome. Please grab a Kleenex or a washcloth might be better. This year I will not share our story, if you want to learn more about Lily and what shes gone through, you can read last years blog here . Our blog talks mainly about living life with Congenital Heart Defects, copping with the stresses, and the ups and downs of it all. But CHD Awareness week is upon us. Did you know that? That February 7th-14th Every year is Heart Awareness week? 2 years ago I was completely oblivious to it, even though I had 2 children at home. I was unaware because they were and are heart healthy, why burden yourself in a world of heartache when you think it will never concern you? Heart defects don't need to run in your family, your child need not have down syndrome or a genetic disorder to have something wrong with their heart as many assume. Yet, many don't know this until they are pregnant with a heart baby (if lucky enough), catching it after birth, or for the rest, the heart breaking devastation of losing your child altogether. There are many cases of teenagers or adult athletes just dropping and dying from something heart related. Did you know that is usually an undiagnosed heart defect that they most likely had since birth. How do we fix this? Is there a cure? Well there is an answer to both of those questions and story in between.

First, there is no cure for heart defects. It is not something you can just slap a band aid on and say good to go. The definition of Congenital Heart Defects is; A congenital heart defect (CHD) is a defect in the structure of the heart and great vessels of a newborn. Most, (not all) require a surgical repair within the first few months of life. Even if a surgical repair is done, it doesn't "fix" the heart, it mends it. Many will lead normal lives, but for many others with sever defects, they have a long road of repairs, follow up appointments, and seeing a Cardiologist regularly for the rest of their lives. But lets go back to the beginning, in order to repair we MUST KNOW.

How do we go about fixing all of this unawareness and heartache?. Well that is all depends on who you ask. I will tell you I push for echo-cardiograms (just fancy name for what many know as an echo) of the heart, which in our case caught our daughters heart defects. Others will tell you a quick Pulse Oximetry test could be a life saving test also. Which I in turn will not deny, but it only depends on the heart defect itself. In our case it wouldn't have done our Lily much good, even though her heart defects were life threatening, they didn't cause her oxygen saturation's to drop into a dangerous or alerting range. For many other heart babies, a pulse ox is a tool that is a matter of life or death. For the babies who aren't diagnosed before birth, or shortly there after because of low apgar scores, a pulse ox test could save their lives. Most babies with low oxygen saturation's usually turn a blueish color, but not all. So here is the question I would like you to ask yourself now and then again at the end of this blog. Is a ten dollar test worth a child's life?

Why do I ask the question? Such a simple response, it should be a quick and easy yes but I want you to be yelling yes, and then telling all your friends who are pregnant, or married considering having children, better yet, your cashier at the supermarket, the lady standing in the same Walmart aisle as you about this little possible life saving test. If you don't want to do it for me, do you think you could do it for a little girl who's story will rock you to your core?

I would like to introduce Cora, isn't she a beauty? Such a beautiful angel isn't she?

Her story is such a bitter sweet one. She came screaming into this world with all her glory into the loving arms of her mommy and daddy. Such a beautiful perfect little miracle, gracing the world at 9:25pm on November 30th of 2009. Getting Apgar scores of 9/9, as close as perfection comes when being born. Going straight onto mommies belly to be cleaned up, then onto being adored by all. It couldn't get much better then that. Mommy and Daddy were wrapped tightly around her little fingers the moment she arrived. Woven in their hearts and souls the moment of being told they were pregnant. Wanted and loved forever. How could a baby get any luckier. Cora went home shortly after birth just like every perfectly healthily baby does. She was placed in her special going home outfit, placed in her car seat with care, and bundled for her first experience outside.

As many parents know, the first few days at home are tiring, down right exhausting. Trying to find a moment to rest but there always seems to be something to do. Then if you are breastfeeding mommy, you seem to be going around the clock, and Cora did just that. Daddy would get up with her cry, just to bring her to mommy. What a wonderful daddy, not many always hear the little cry. But Cora's daddy held her every moment he could. He couldn't feed her a bottle so he made sure to at least help mommy by bringing her their sweet precious little girl.

At just five days old, on December 6th, things went wrong. Cora cried, it was time to eat, so daddy once again brought her to mommy. Mommy and Cora settled into their chair, and with a bit of squirming and screaming, mommy finally got Cora situated and she was a happy little girl. Daddy walked away to sit down to watch a little bit of TV, he barely made it into his chair when all of a sudden mommy screamed. Mommy looked down and Cora's mouth and nose were covered in blood, she wasn't breathing. What was happening? This healthy little girl was eating just fine a moment ago. Daddy called 911 while mommy did CPR. Finally daddy decided it would be quicker to get into the car and drive to the hospital instead of waiting for the paramedics.

By the time they got sweet little Cora to the ER she was gone. The team worked on her tirelessly, but the doctors told them it was to late, their sweet little girl was gone. Mommy and Daddy went to see her, one last time, then all of a sudden they got a super faint heart beat. Was this hope? The doctors worked on her a little bit more, a few more minutes her little heart fluttered for, but then said enough was enough. The doctors once again told Mommy and Daddy she was gone. How unfair to have to hear it twice. How could any of this be happening? She was born perfectly healthy, nice and pink.

After an autopsy report was done, sweet little Cora was diagnosed with Congenital Heart Defects. Yet not a sign nore symptom at birth was present to alert them to any of this. With high apgar scores, with great coloring, beautiful cries, there was nothing from the outside appearance that let on to anyone there was something so wrong with her little heart. Could a simple Pulse ox test have saved this little heart?

In Cora's case we will never know. Yet shouldn't such a simple little test be offered to all babies before they go home? Why would a parent refuse a possibly life saving test? Like I said above, I am all for echo's, but not every one's insurances will cover them seeing they are about $5,000 a test. For the most sever heart defects, a pulse ox should detect it, it should bring enough alertness to make the doctors stop and try to figure out what is going on. How are you to say no to a small test as a parent?

Are you convinced yet? Are you saying, Jenna, stop it already we get the point, ask for the test. You can't be told no if you are asking for it. Granted this test isn't a guarantee, but it is a chance. A chance that one little heart could be saved from the same story as Cora's and Cora's mommy feels the same.

Kristine has now made it her life's mission to spread this awareness. Her life was ripped to pieces that dreadful day, her heart was ripped out as she fell to the floor in tears. We all have choices after life altering times such as these. As much as it hurts Kristine every day to get out of bed and some days she can't without the help of Cora's unfaultering daddy, she has a mission. Can you take the time to help her with hers? Our should I say all of ours? As a heart parent we always have a mission of awareness. How do we change things? One voice at a time, but if all our voices echo the same thing, the ringing effect is that much louder.

So once again, I ask you, is a ten dollar test worth it? Is it worth it to you, to take the 60 seconds it could take you to tell another? Is it worth it for your child? Your friends? Your neighbors? Your servers? Awareness is only made by taking the time to make others aware. Cora's story needs to be shared, to make other's aware, because unfortunately, there are so many other Cora's out there who's voices weren't heard, who's stories go unknown. Every story such as this should be told, it should ring in the ears and minds of others. Let Congenital Heart Awareness be brought to light and the attention of all. The only way of doing so is by your help. One person at a time. Are you up for the challenge?

I challenge you to tell at least one person, a friend, a relative, and see how many people they tell. If you don't want to do it for me, will you do it for Kristine who's arms ache for her little girl who was ripped from her so suddenly? For Cora who became an Angel before she should have? For all those little ones who were lost to something they never knew they had. To those who fight a brave fight through surgeries but still lose to it anyways? To those who still fight, who endure more then any child should have to? Are you up to it?

Think of that the next time you are having a conversation that is lagging, it could be filled with awareness, you could help save a life. You could help one less set of parents ache from losing their child.

I make it my goal because of my Lily, but those of you who don't have Lily's or Cora's, could you do it for us?

We thank you, from the bottom of our hearts, from the bottom of our broken yet mended hearts.

With our love, our many of hugs, and blessings to all,
Jenna McLaughlin- Proud mother of a Princess CHD Warrior, who has under gone so much, yet fights on.

In our many thoughts all of our dear sweet warrior angels, may you stay close to your mommies and daddies during this time or heart awareness. You are gone, but never forgotten.

Monday, February 8, 2010

NG What?!?!?!

It is nice to be home after a brief stay on the 7Th floor. We were on contact precautions, which for those of you who don't know, you have to gown up and wear gloves when you are bedside. Needless to say, me and the gowns became good friends, because Lily wanted me to hold her all the time. I wanted to lay next to her but she wasn't having it. Lily grew bored rather quickly, so instead of watching her Barbie movies, which were getting redundant, even for her, she decided that she needed to help with the plugging in of her monitors. Believe it or not, she actually got them all right once or twice. We didn't give her to much grief for this forum of entertainment, she didn't need to be on the monitor all day on day 2.

During the stay, we lost Lily's last IV site, and unless we wanted to put a central line in, which we really didn't, we opted out for the good ole' NG tube. Now for those of you who read my posts during Lily's last surgery, you will remember me talking about how we had one in but the doctor told us to pull it. As much as I hate the thing, I know in all honesty right now it is our safest bet med wise. I hate her throwing up her meds, or me having to hold her mouth shut and her throwing up and swallowing it. Just thinking about it makes me cringe, but with the blood thinner, it is not a force to be reckoned with. Tylenol or Motrin, if she didn't take them, ok, same with Lasix, it was what it was, but not the blood thinner. And then with her recent weight loss, the doctors finally relented and realized mom was right, and for now the battle of meds are nothing more then telling her not to gag as I push them through the tube.

I hate seeing her like this. When I have to change tape or reposition it, she gets her No-No boards on, that is truly sad to see. She is so pathetic as she holds her arms out for you to put them on and whimpers, but yet she doesn't fight you. Its like she has the will to fight it, but doesn't because she knows it has to be done. Although, she had a look of triumph on her face when she pulled it out on accident today. She rubbed her nose, took a few deep breaths and grinned.
I cringe at having to hold her down, reaching into the basket of supplies which was recently used for toys. Our hospital baskets as many know them by, have always been used for blankets and medical supplies, but recently I emptied them all out and put her toys into them. It breaks my heart to have to empty one out, solely for the use of the NG medical supplies. To deal with home health care supplies again. Just one more phone call to add onto my 10 daily I deal with. Many of my friends wonder why they don't hear from me these days. Between calling about an at home INR meter, dealing with insurance, case managers, prescriptions, and doctors offices, now I have to deal with Apria home health care. Once I wrap all those phone calls up, as much as I love my friends, sometimes I just don't have the energy to talk, or the brain span to. Life is so hectic these days, and as much as I know they are for the better, sometimes I can't help but want to go back to the days before this last surgery. Some days I ask myself did we truly make the right choice by putting the prosthetic valve in? When we go for INR meter checks she still has to be poked 3-4 times, because she just won't bleed. I hate needles, I hate being poked, I can only imagine her. I just want to throw my hands up and scream stop, just leave her alone. Take me instead...yet we all know that can't nor will it ever happen. I can't wait for what the future will bring with medications, because I hold hope that sometime in the span of Lily's life they will come up with something new, where she won't have to get poked all the time. She won't have to hurt all the time. Granted what is a small little finger or heel poke, when you might never have to have an open heart surgery again. Truly, that last sentence is all the keeps me sane most days.
Thank you to all my friends for your sincerest prayers and well wishes. Truly, I couldn't get through the day without God's help and I truly feel his presences around me in my time of chaos. He is the well needed breath of fresh air that blows me in the right direction. He washes over me like a wave washes over the sand, and with it he brings me comfort, strength and clarity.
Love Hugs and Blessings

Friday, February 5, 2010

Lesson Learned

I have learned a few things today that I felt needed to be shared. I figured if we ever learned from others mistakes here are a few you should jot down into your mental notebook of do's and don'ts. What are they you are asking? Patience's young one, wisdom comes onto those in bad ways when you are to eager to know. I very rarely mention Karma, this would be a time I do... Alright Alright, on with it we go...

1: Don't take NyQuil when your significant other does so too. This is a recipe for disaster. 3 children, plus parents druged out on help you feel bed meds....Why did I take it you ask? Well I had such a brutal headache when I got home, I had taken 800mg of my Ibuprofen along with Tylenol and well, that was a no go. So I figured I needed sleep and it would be a cure all. Well duh Earth to Jenna, 3 sick kids, a sick husband, you sleep...HAHA...if it wasn't your insomnia keeping you up, it is the responsibilities of being a wife and mother.

Lesson? Say it with me here, NyQuil BAD, insomnia good when household sick.

2:(This is a biggie) When getting ready to go in for an echo and you are walking towards the door checking that you have everything. Do not look at the pre-made hospital bag from the night before and scoff at it. I mean it wasn't out loud or anything, but it felt me mentally mocking it. I was...I was thinking, HA HA, we narrowly escaped the 7th floor and beeping monitors...HA HA parade of mocking was rained on shortly after arriving...HA HA HA...damn bag got the last laugh...

Lesson? Don't ever mock...Mocking is rude, it is mean, it may be funny for people who enjoy sarcasm and a power trip...bad for when it gets thrown back in your face. Not sure about you but I don't enjoy when people laugh in my face...and I sure as heck don't like the flippin bag laughing at me....DON'T MOCK THE BAG!!!

3: While driving, the radio sucks. I go through all the stations it seems and nothing is good on. Christian, Country, Hip-hop, where am I going with this? If you have an MP3 player in the car, it is will make you feel like an idiot especially if you have one of the cars with all your volume controls and stuff on your steering where... Anyone see where I am going with this?............................... NO...ok so well lets just say, I have one head phone in my ear, because duh you don't drive with 2 because you have to hear. I always put it in my left ear because I am partially deaf on that side anyways, so I figure I can at least listen to something good, while still paying attention to the traffic around me. OK off track! So, when you have your earphone in, and it doesn't seem quite loud enough, as good of an idea as it is to not look down and play with your MP3 player to turn your oh so wonderful music up; it also doesn't help if you tried turning it up via steering wheel button. Lets hear a major DOOHHH for Jenna, because if I didn't already feel like a dork, I do now after admitting it.

Lesson? MP3 player good music but potential hazard for a blond moment, proceed with caution.

here is the last one....

When driving 5-6 mph above the recommended speed limit know it is ok to do so when and officer besides you is doing 5 more then you are. And when you are in the carpool lane doing 5-6 over, and get break checked, remember not to lay on your horn when it is a police SUV ahead of you. They are not fond of the horns. But seriously in my defense, I wasn't tailing him, he just literally break checked me it seemed. Like...Hey behind me, i can tell you are going a little faster then the 65mph posted speed limit, and even though you won't get your picture taken by photo radar, I truly have nothing better to do with my time then brake check you to make sure you don't get to where you are wanting to go in a timely manner.

Ok Ok, that may have been a bit of an exaggeration of what Mr.Police Officer was thinking, but seriously, what was going on in that brain of his when he was like...OH...Break check. There was no one in front of him, there was no reason for him to stop like that...he seriously just wanted me to slow down. OK..dually noted, don't go as fast as the police when behind him. I guess on the up and up serious note, he didn't pull me over and give me a ticket for honking at him...can you get a ticket for honking at them? I don't doubt it.

Lesson, police officers rule the road, if they want to break check, they can break check and there is not a dang thing you can do about it. Any inferiority complex you may have about your driving skills or the lack there of in some peoples cases...just remember, they will put you in your place. I will remember this point the next time i get the urge to break check someone, which in my case, I get the urge a lot.....I swear I am not an aggressive driver...maybe a tad bit vocal but not aggressive..

Well, it is midnight, I should get some rest, I am exhausted. Lily is sleeping so that is my exit Que to say nighty night. Goodness knows we will have another long day ahead of us tomorrow. They come around for x-rays way to early for my liking. Guess I should suck it up and stop my yapping.....

Thank you for your prayers

Love, Hugs and Blessings

St.Joes...our home away from home

Yup, that's right, we are back at St.Joes. We were at the ER yesterday and they were thinking about admitting us, BUT, she looked good enough to go home, so home we went. We had to come back this morning for a follow up echo, (everything looks great) and she still was feeling and looking like crud. She is retracting really bad (bobbing of the head while breathing, and tugging under the ribs) She has a yucky cough, and her X-ray came back looking hazy but they don't think it is pneumonia, not sure what to think yet.

We had got an IV placed on what seemed to be her last vein only to loose it a few mins later do to the fact we were drawing blood from the other hand, and all her twisting, turning, and fighting, she pulled the other one out. Not sure what we are going to do. She has so much scaring, along with all her veins being blown. This stay is going to suck. Her respiratory rate is high along with her heart rate because of her fever. Her o2 saturation's are holding at the 95-96 area on room air so hopefully we don't have to put a nasal cannula on.....she is sick and miserable and mommy is just pure tired. Chris and the boys are at home sick also. Knock on wood, I have yet to get whatever this is and I am truly down on my knees praying I don't get this. I don't have the time, nor do I have....well the time for this. I am hoping for once my immune system holds strong, which usually doesn't happen BUT one can truly hope. Chris is usually the last to get anything so...yeah...(Wow, I can't believe I just said, So yeah...I feel so high school right now.) I am so stinking tired, I listened to all 4 of them cough in surround sound last night, Lily puked last night from coughing too, and the boys were up and down. I came to the hospital today totally unprepared, I am using one of the floors laptops right now, and lets just say I am not fond of it, but it will do for now. I need to go home and get what I need but I am so stinkin tired. It will be a long few days ahead of us, but nothing we are not unable to handle.

She will be getting a NG tube for fluids right now seeing we are unable to get an IV in place. As long as she holds her fluids down that will be fine, but if she starts vomiting again then we will have to try to find another vein...say a prayer it doesn't come to that.

All in all, she is just got a cruddy cold that is kicking her booty. Please pray for an uneventful stay and a fast recovery. There is no place like home for us. Hopefully in 24-48 hours we will be back in the comfort of our own home.

Love Hugs and Blessings