Lily's first wedding and mommies thoughts and reflections

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Lily with her Unlce Cody and his new wife Makenna

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Left to right

Daddy, Cody,Lily,Makenna,Mommy

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Mommy with Lily girl

Below, Mommy with her Lily girl

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Getting late but still wide awake!

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Lily with her Daddy

Lily got to go to her first wedding today...it was tons of fun. If it weren't for the bride she would have been the prettiest there. The bride was beautiful but seeing I am mommy, I am byasst, so no one can be as beautiful as my child.




She sucked up the attention from her uncle Cody, (This is an Honorary uncle) he adored her. He kept refering to her as a miracle child all night whenever anyone would walk up to us and adore her also. It breaks his heart that she has such a special heart. Such a good uncle, and such a wonderful friend he is. We miss him terribly, he is stationed overseas in Japan, while in the Navy, he is going on 5 years this year. Him and his new wife leave first thing tomorrow morning. We wish they didn't have to leave so soon, Cody has never seen Austin, and the last time her saw Lucas he was 2 years old. It has been a while since we last saw him. We can't wait until he returns again, hopefully for good sometime soon.





Lily was a hit at the reception, I repedatly answered questions about CHD's and her health. Does it get tiering? Yes....do I mind, No..This is our life, and it could happen to anyone, better to open their eyes to it, then let them walk blindly and then one day it could possibly effect them or someone else they know. Such a true blessing we hold in our arms every night. She snuggles close as we rock her asleep, she breathes deeper and heavier as you sing to her, and she will peek open those eyes one more time right before she heads off to dreamland, I like to say she is making sure she is still with Mommy and Daddy, not Jesus. I think she spends her time with him in her dreams, because she sure smiles a lot durring them.





I wonder if he held her close when I couldn't. I believe he did, because that would bring me comfort knowing that she at least had some loving, comforting arms around her in her time of need, that they gave her the strength and will power. I belive that the Lord whipserd in her ear durring the first 24 hours after her 2nd surgery. I feel deep down that he was the one saying to her..."Lily, you can't come home yet....I know your tired...I know your heart is weak....but do you feel your mommies hand there in yours...she needs you right now....have faith my child...here is my strength...here is my courage....here is my love....fight...I will never leave your side....let me do the work for you....just rest dear child...sweet child of mine...just rest now." Were these his exact words to her....Most likely not...and we will never know what he said to her, because that is between her and the Lord....but I like to wonder...The Lord is always by us...he never will leave us...even when we turn our back on him. He stands there with open arms, waiting for our return.

We have an infection!

Well...lets take a step backwards now shall we? Lily has an infection on her cheek, I will take pictuers of it later..I am still reeling at the moment from this information. She would not stop screaming last night, she did not want to sleep and when she did it was very restless, she was tossing and turning. We got up this morning and my husband goes..Jenna have you seen this?" I walked over to her and he turned her head and her cheek was COVERD in puss filled boils. It was under the tape that held her NG down. We pushed meds quickly and then I pulled the tape off...Oh my was that horrible. It smelled attrocious...the puss boils started busrting at once and the smell made you either want to throw up or pass out. I called the pedi immdiatly and they told me to bring her in pronto. We got there and they did the head to toe check over. They couldnt get her o2 sats....suprise suprise, she never holds still long enough for it, so they had to do it the old fashion way by listening and timing her resp etc. SO...after her head to toe exam, and looking at her cheek which was reder then a sunburn that has been slapped...he announced she has a skin infection, he said it is along the line of Infintigo(not spell checking that one) and that what ever we do, if it HAS to be touched, that we have to wash our hands, sanitize them, and then do the same thing afterwards. That is will most likely be highly contagious by contact...GREAT...WHOOO...But then the doc says...Other then that...Shes perfectly healthy....should I be the one to break it to the doctor that whe you tell me she has an infection then annouce that she is perfectly healthy, that is kind of an oximoron?No...I wouldn't do that...he gets paid way to much to be told that he just said something stupid...LOL...So...lets add one more med to her 6 already...YA...Anywho...just wanted to give everyone the scoop...the 411...so...once again..we ask for prayers, because if this get to be bad...well then...you all know it can turn bad quickly. UGH..just one more thing.

Cardi apt today!

Oh what a wonderous day. Long but wonderful!! Today was Lilys PC apt...(Pediatric Cardiologist). It went well, if you don't count being there for a 12:30 apt but not being seen until 2pm. We saw Dr.Rhee and he came in and said her EKG looked good, she still has a slight murmer but nothing that is horrible, nothing like it was when we were there last...as he said..it sounds like her heart was going to come out of her chest because it was so loud. From her Echo her heart looks wonderful, the procedue Dr.Cleveland did turned out well, he did what is called the Konno procedure and basicly made a hole in the septum to make a passageway for the aorta, then put a patch in it to keep the blood from running together. We have to watch for narrowing up in the aortic valve now because of where it was surgicaly repaired, like everyone has said, it can be 2 years from now, it could be 5 years from now, we just have to wait and watch. Which to me totaly sucks because it is like watching a ticking time bomb, the doctors said at least I know what the signs and symptoms are...is that suppose to be comfort to me? That at least I know what it looks like when she goes into heart failure? yeah...thats a real comfort...at least I can get her to the hospital before her life is almost snatched from me...watch while she is on the brink of death...hold myself...because I cant hold her...and pray to make it to another day....real comfort.

(Lily having an EKG done)

Sorry for the dramatics, but still reeling from her emeregency heart surgery. I still can't get over the fact that we went from looking at no more OHS (Open heart surgeries) to this can and most likely will happen the rest of her life. I pray for divine healing and not that I dont have complete faith in the Lord of that possibly happening...but in all reality it most likely wont...and thats ok...his will, will be done in which ever way he choses it to be done. There are moments I dont want to sleep...I just want to stay awake and watch her sleep...so I dont miss a moment..just incase tomorrow never comes for her or myself. To many, the thought comes to mind...she needs a therapist...but to a mother who has a child with medical issues such as ours...they understand. Each day is a birthday in a sense, every little new thing they do is a huge accomplishment because for them to get where they are today, they are defying the odds, because medicaly the shouldn't be here with some of the problems they have. It is by the grace of God that they are. He has such plans for them, and I feel his hand over our life.

~This is Lily today at the doctors office~

She moved her head at the last second in this one...it would have been perfect!

Seeing I can't take the kids for a profeshinal picture I have to do what I can at home!

Oh how she works that lip....she has us wrapped around her finger!

My favorite picture today!

Mothers Lie

Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.



Mothers lie.



Every mother wants so much more.


She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.


She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.



She wants a baby that will roll over, sit up and take those first steps right on schedule.


Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.


She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.


Call it greed if you want, but a mother wants what a mother wants.



Some mothers get babies with something more.



Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.


The doctor's words took your breath away.


It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.



Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.


It didn't seem possible.


That didn't run in your family.


Could this really be happening in your lifetime?
There's no such thing as a perfect body.


Everybody will bear something at some time or another.


Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.


Mothers of children with disabilities live the limitations with them.



Frankly, I don't know how you do it.


Sometimes you mothers scare me.


How you lift that kid in and out of the wheelchair twenty times a day.


How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.



I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.



I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.



You snap, you bark, you bite.


You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.


You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.


You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.


You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.


You are the mother, advocate and protector of a child with a disability.


You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold. Web reference unavailable. (Thanks to Andera K. on the EOHarm discussion list.) -ed.

Were Home!!!

Saying our Good-byes!

Above: Lily with MaryRose

Above: Lily with Kristi

Above: Lily with Rhonda

Above and Below

Lily with Dr. Grimaldi

Welcome Home

So here we are...Home at last! I can't believe we spent another 4 weeks in the hospital. That would be 8 1/2 weeks of her 11 weeks of life! We came home on the 15Th around 7pm. She was a little fussy once we came home, you figure being around constant noise then coming home to a household that was calm for the time being was a little bit of an adjustment...not to mention that she wanted to be held ALL the time, thanks to her nurses at the hospital, along with my doing....and not to mention the walks we would take during the day and nights. So...it has been hard getting her to adjust to home life but heck we have been home 2 days and shes been gone 4 weeks....it will take a while. Oh so I have to mention she makes me laugh because if she doesn't want to be held she wants to be in her bouncer in my room, on my bed, with the TV on...and what channel might you ask???? The Food Network of course. She is taking after mommy already. I have loved that channel since I was a kid...couldn't get enough of it and I love to cook so I am hoping she will also. But that is me getting ahead of myself, she is only 2 1/2 months old so we have a LONG while until we get to that point in life.


When we left on Thursday we got a fond farewell and a "We would love to see you again, but not like this." speech. Such a wonderful group of nurses and doctors at St. Joe's Heart and Lung Floor. I can not be thankful enough for living so close to them. It was sad to leave because it is our second home but so nice to come home and place my baby girl back into her bassinet and have the family all together under one roof again. How nice it was to lay in bed and be able to have my husband at arms length and my daughter at my other arms length. She slept through the night our first night home, like the little angel she is....when she is a in a good mood that is...lol. She came home on 4 meds, her amiodarone for her arrhythmia and lasix for fluid, previcid and zantic for the tummy problems. We are now on Nutramagin, she no longer is getting breast milk because I have dried up, unfortunately. Under all the stress from her second surgery, I either forgot to eat or pump, so needless to say, there goes the milk supply. I am so tired trying to keep up with 2 rambuncious boys and a high maintenance little girl along with keep a household in check and be a companion to my husband by spending time with him instead of constantly sleeping. Our life will settle back into normality here soon I hope but until then, it will be a lot of hair pulling, pillow screaming, and headaches. But if you were to ask me if I wanted to trade any of it, I would look at you like you were crazy and tell you I would not change one thing about my life. My life is a blessing, who could ask for more? Be thankful of what you have because it could be gone tomorrow.

Imgaine....A CHD awareness Video

Make photo slide shows at www.OneTrueMedia.com

I made this for Lily. It is the longest video I have ever made but it was well worth the time and effort. I hope you enjoy it.

My request!

I am so very tired so I am hoping this won't be to long. Lily is doing well, besides our little set back of projectile vommiting and loss of weight our main concern is doing well, which would be her heart. The doctors said hopefully it will stay that way for the next couple of years to give it a little break before its next beating. I do believe I offended the doctors when I asked this morning for a G.I specialist. They told me they will bring one up to see her if I really felt it was nessacary, which I do. They don't believe she needs to see one because they feel they won't say anything more then what we already know, which is nothing really as of right now. They have elimanated a few things but still have yet to find the cause of this problem, and I will not except Heart babies just throw up, and I will not except "we dont know why, but we might just have to accept this." There has to be a reason this is happening and until I have a reason I will not rest.

We are rapidly approaching a month in the hospital again, where has the time gone? It is sad that this little thing is holding us up, but in all reality, it isn't such a little thing. This all is so frusterating, watching all of this and not being able to do anything more then be there. I was told a few days ago that I was not allowed to hold her durring her feeds or right after. Seeing her feeds go over 2 hours of time and then we have an hour off, when exactly am I suppose to hold her. I asked the doctor specificly that, because if she is that sensitive we have bigger issues to deal with . They go down on her calorie intake and then back up. We were at 28cal a week ago, then switched her formula, went back down to 24cal, they went up to 26 cal today and she has thrown up 3 times already. The doctors told me we have 2 choices because she needs her extra calories, we can either give her large quanites and lower calories or small quanites and higher calories....she tolerates neither. They have her still on the 3 medications for her belly, Zantac,Previcid,Regnal, you would think all those would help but it hasn't.

She isn't bottle feeding anymore, we have a speech therapist working with her daily along with an ocupational therapist and physical therapist twice weekly. She has little to no head control, she sleeps like she has frog legs and her shoulders roll all the way back causing her chest to push out....that was caused from her open heart surgeries. They want me working with her, but that is proving to be hard with the schedule I maintain while down there. I get there around Midnight or 1am, and then go to bed around 4am, wake up around 10am after being up and down between that time. Since she is a step down baby now, which is good progress, we no longer get 1 on 1 care, not even 2 on 1, we are now on 3 on 1....so it makes it hard for the nurse to get in her room to calm her down. I can do pretty much everything but rounds. I know the moniters, the pumps, I can push meds, I can change NG tubes, along with weigh diapers and monitering spit up.....I log it on the board and the nurse charts it....helps her out and lets me feel like I am actually getting to take care of my daughter instead of leaving her care to strangers.

She has quite the personality these days, she has started to coo, and she smiles now. She melts your heart with that smile, she also has her pouty lip that breaks your heart. She has me wrapped around that tiny little finger of hers and I love every minute of it, the only thing better would be having her home again. All in due time, they are thinking maybe next monday we might head home, but we heard that 2 weeks ago, and a week ago, so I will believe it when i get handed the discharge papers and care insructions.

Well that is about it for now, when I have any new updates I will surely put them out. Thank you for all your continous prayers.

Much Love,

Jenna

Mothers Day Evaluation!

~Princess Lilyana~

I've always prided myself as one with self control, that knows how to compose myself in the preseances of other. I know when to smile, when to frown, when to be angry....I have come to control my emotions over the years...but over the last couple of months I have cracked under preasure.

As I sit and look at my daughter and see the scar on her chest and hear her moniter beeping I cant help but let the tears slide down my cheeks. She has faught so hard to stay here with me and I can never be any more thankful then I am, it breaks my heart that she has had to fight so hard in a world that is hard enough to live in. She is only 10 weeks old and has been through so much more then most people, but she smiles and coo's through all of this....such is the wonders of being a baby.

As I walked away from her crib today she cried....I turned around and scooped her up in my arms...I showerd her with kisses and my tears mingled with hers as we both cried...it broke my heart to put her back down in the crib...I placed her binkie back in mouth and rubbed her head as she started to fall her asleep. I laid my head on the railing and sang to her....she looked at me once more before she closed her eyes and headed off to dreamland. I kissed her once more and backed away quitely and chocked back my sobs, I whispered I love you and walked out of her room with a heavy heart....I got, "Happy Mothers Day" from all the nurses on the floor....

I am blessed...I know I truly am...I have my 2 boys and my little Lily girl, but I can't help but be sad on this day. How I would have loved to have my 3 kids together with me....this is my 5th year as a mother....never in a million years would I have thought I would have spent Mothers day in the hospital with my child, but I didnt get to spend the whole day with her, I spent a fraction of the morning with her seeing she didn't allow me to go to bed until 4 this morning, so I woke up at 10:45 and then had to leave by 11:30....I got no more then 45 mins with her this morning....this Mothers day morning....with her. Stuggling between knowing whats right....that I need to spend time with all my children not just one, was one of the hardest things in my life to do. So I left this morning and came home to go swimming with my boys and husband. We all had so much fun....and I know if Lily would have been home with us we wouldn't have been able to go out because she is not allowed in a swimming pool any time soon. It saddens me to think she will miss out on so much because of having to be so careful, but then I remind myself that she is alive so she will at least live to be able to experince life its self....what mother could ask for more?

As I sit here and type this, I look over at my Austin boy...who looks just like his daddy and mommy, such a mix between the both of us he truly is, and then I look over and see my Lucas who is a spitting image of his father, I look at them and they are one and the same, he is such a beautiful little boy....and then as I sit here and look at pictures of Lily she looks more like me but yet I can see so much of her daddy in her....my children are my world, they are what makes it go around....I am thankful for the man I married...which I am sorry to say had to work today...so here I am...2 boys, and a heavy heart but yet so thankful....it is hard to explain to many but let me try....

I live with fear everyday...I try to look on the bright side of things....I look to each new day with my daughter as a blessing, because there might not be tomorrow. How do you live with that? How does one with the unknown without going crazy. I know anything could happen to any of my children any time, but Lily's case is a little different.....I know it is in Gods hands but I once again wish he would let me in on the plan, the knowing whats ahead....you can never prepare yourself for death but if you knew when it was coming you would be able to greet it knowingly and be thankful for all the time you have had....dear lord...I can not even process all my thoughts....I feel as if my mind is walking in circles laughing at me because I can not get the thougths in order....I was to close my eyes but I cant...I want to lay down and not wake again, but then my daughter is there smiling at me...and I stay awake and keep going for her and my boys....i just dont know how....I am so tired...so exhausted....I feel way older then I am....and I still have many years ahead of me....

Lily's second video

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Lilys first video

Make an on-line slide show at www.OneTrueMedia.com

Wanting her home Safe in my arms!

Hello everyone, I just wanted to send out an update on Lily and the family. The boys are doing ok....you know that this is starting to ware on them, they want mommy to come home and they want Lily to come home also. They dont understand why she has to stay at the Hospital so long and why the doctors can't fix her and make her better. I wish I could just magically make them understand what is going on....because it doesnt matter how much I try to help them understand I just cant seem to break it down into the kid terms they need to hear. The stress is so unbearing some days that I think we all could use a fun vacation but there is no time for such indulgents. That would be a luxery in our life now and we dont have time for those at the moment. Now about Lily, she is as well as she can be, her heart is doing fine, I talked with the cardiologist today and he said from the echo they did today her heart looks the same as it did after surgery....we just have to keep a very close eye on it. I asked him when he thought she would have to have another surgery...just for kicks...because I already know that answer...but he told me that they are hoping not for a few years. They are hosping that her heart will have time to gather some strength and try to heal to the best of its abilites before another open heart surgery but we have no guarantee's of when it will happen again. We just have to sit by and wait and watch he said. Not what any parent wants to hear but that is our life and it is what is to be expected. Now about her tummy....it hasnt gotten any better yet. She is still throwing up a few times a day and they have her on 3 different medications for it, Zantaic, Prevacit*, and Raeginal*(sorry for the horrific spelling but I haven't had the chance to write them down yet). They have also changed her formula again from Pregistamil to Nutramagin....all I can think of is how much it is going to cost us to buy those, WIC will pick up some of it but not as much as she will need....the inusurance will also write us a script for it but we will still have to buy some cans of it and from what I have seen, it is VERY pricey formula...My stress level is at an all time high, my milk production is slowly dying out....I want it to stay but all at the same time i want it to go...I am so exhausted as it is that I can barely rememeber to pump more then twice a day. I have been taking suplement to help it come back in but it doesn't seem to be helping....but then again if you don't remember to eat more then once a day doesn't seem to help much either. I made myself stay home a few nights back because I knew I was no longer safe to drive but even being that tired I could not sleep. I have begun to fear my dreams, they are all sad and depressing and I chose not to dream right now, so chosing not to dream means lack of sleep and restless sleep when you finally do close your eyes. The doctors have given me meds to help with my anxiety but I can't afford to take it and something happen and be so groggy that I cant wake myself up. I hate being terrified like this, but once again, I try to remind my self that such is my life and in time I will get use to all of it. I have good days and bad days, I have days where my tears are my constant compainion, and then I have days where I am in acceptance of life. I just want to hold Lily tight and make this world dissolve....I want to make sure she is safe and out of harms way but how do you do that when the battle lies within her body and you as a parent know, no matter how many kisses you give, how many hugs and I loves you, you can never make it better and never make it go away. As a mother your instinct is to nurture, to take care of your family and make things better.....what do you do when you cant do that.......Im sorry for my rambling....back to Lily, they are talking that if the Nutramagin doesnt work they will switch her to Neocate and if that doesnt work they will try Soy....and if that doesnt work then we will have to insert her NG lower, it will go from her stomach into her intestines......so we will skip the stomach all together so she CANT throw up....tell me...would that be getting to the route of the problems? no!!!!!! we would not figure out what was causing it...we would just be stopping it by skirting around it...yeah that makes SO MUCH SENSE!!!!!! (Rolling my eyes over here.....hope you picked up on my sarcasm). Then I hear the....well she is gaining weight even though she is throwing up so we might just have to accept it and send her home.....oh that makes me angry when they tell me that....under no terms will I accept my child throwing up after every feeding.....if it was spit up that is one thing but THROWING UP is a whole different situration...UGH...the doctors are frusterating...and they have made me angry once or twice to the point where I have actualy lost my temper in their presensce.... I have had the eyebrows lifted at me and the quizical expressions such as....where did that come from....or the...I didnt know she had it in her, type of expressions. I am known as an even tempered parent and laid back....well I am...up until you tell me that you are about to give up on the situation and admit defeat.....THERE HAS TO BE A REASON SHE IS THROWING UP....FIGURE IT OUT......I dont' think they liked when I said that.....UGH....frustration.....well....I will keep doing my research...and if anyone has 2 cents to throw into this and has an idea you want me to ask the doctor...by all means....PLEASE LET ME KNOW....I am grasping at straws right now...and I am willing for them to try any test to figure this out. OK....I need to run right now....as soon I have any new news to update I will. THank you to everyone who continues to pray for my sweet little girl....it means the world to me...I thank you from the bottom of my heart and no words can every explain enough how much all the support we have been given means to us. Sending our love, our hugs, our thanks and our prayers.Jenna and Lilyana!

Book in Process

This was us waiting....

Lily had a TEE (Trans Esophageal Echo) This was right before we were admitted back to the Heart and Lung Floor!

This is what it looks like to wait for news while your child is in surgery!
A hard sight to see....you just want to say...please don't take my baby! But you know them taking your baby is the only way she will survive!
One last kiss goodbye for 10 hours.....a horrible thought of...this may be my last kiss inevitably crosses your mind...

This is one of the hardest moments....your child squeezes your finger...all you can do is hold that finger as tears of joy and fear run down your cheek. You thank God that your child is still with you and even though you can do nothing more then hold that tiny little miracle of a finger, you are grateful, for every second you have with them.

This is why we love St.Joes.... Thank you Maria for Loving my daughter the way you do. You truly are part of our family.
Hi there daddy.....

Daddy said he didn't want a girl....now she is his pride and joy.... although he will still tell you, girls are trouble....I mean look at how much trouble she is giving us already... and she isn't even talking back yet...


So I finally have begun my book, well not my book.....it is Lily's story....it is OUR journey. Since a child I have always wanted to write a book but I never knew about what. Well once I found out Lily's heart while being pregnant, I have felt the drive towards doing something about this. I felt it was unfair that we knew nothing about CHD's and I find it even more unfair that we were LUCKY to have found out about it. No one should be caught off guard on any of this. So...with the Lord direction I will get this book done. I am using all my blogging during pregnancy, along with when she was born, using the journal that I have kept from both rounds at the hospital and most likely that will be used again seeing we don't know when her next surgery will be....but friends, family and nurses wrote in her journal....the book will include pictures also....I am so glad I have documented as much as I have...I truly feel God has placed this in my life so I can help do something about it......I guess you could just say I am Mom on a mission.!!!!

One Step Forward....Two Steps back....lets do the PICU dance!

So My precious Lily girl is giving me grief once again. We were suppose to go home over the weekend but we are doing the PICU dance, which is one step forward and two steps back. Her heart is looking great as of right now, we still are having arythmias but we had that last time we came home. We are looking to come home on more meds this time around, the Amiodarone for her heart rythm, Lasix for her puffieness, and then Zantac for her Reflux.....

Now about that reflux...strange because you ask one doctor about the results and they will tell you she doesn't have it but if you ask another doctor they will tell you she does. I think they all need to put their heads together and get back to me...

A Swallow therapist came by and told me from the results of the upper.G.I she does have reflux and they want us to come back...once we are released that is...in July for another follow up upper G.I....lovely...they are saying that one of the valves isn't closing completly and is allowing the food and stomach acid to come back up and just sit in one place....I wish I could have gone down to the radiology department and watched the test, I am very interested in how it works, but unfortunatly as a parent you must sit and twiddle your tumbs in anticpation instead and get the news second hand.

So we are still on a continous feed which doesn't look like it is changing any time soon. But hey we are up to 22cc an hour instead of the 20cc....Look at us go...Lily is still congested and has to be suctioned at least twice daily and she throws up at least 10-20cc, twice daily. we are now really stinky formula and I wish they would just go back to the regular simalac, I don't think the formula is the problem right now. From what all the nurses and doctors have told me, they think there is a little cold going around the unit right now because she isn't the only baby throwing up and having yucky stinky diapers. She pegged Nurse Kristi today as she was being held by her, she got that look in her eyes and before I could get the words out of my mouth, "She going to throw up," it had already happend....we were ready for it when it happend again. Most times when she does throw up it comes in waves of at least 2-3 times in a row. After we get that out of the way, she is back to being cute adorable Lily and all smiles while you clean her off and change her clothes yet AGAIN....I swear that child wears more clothes in one day then I where all week sometimes....ok...maybe not that much but you get the picture.

She is still on methadone for her with drawls....I wish they would wean her off of that already...because we can't go home on that nore these feeds....at the rate shes going we are going to catch up to the length of her first hospital stay of 28 days....makes me laugh....because we didn't think we would be back in the hospital ever again except for a heart cath...and now we will be facing St.Joes every couple years more then likely....I love the place, it is like a home away from home, and the nurses and doctors are great, but i would rather just drop by for a friendly visit, then to come in for a 3-4week hospital stay. We are rolling into our thrid week.....ugh, what I wouldnt give to be home again. But we are where we need to be and it is what it is. I won't look to tomorrow until this day is about to close. One day at a time is all we can take it, never more then one day at a time....oh how frusterating it is....but that is our life....and I would not change it at all..... Life is a womans gift, and death is gods... I am thankful for all that I have!

The last 2 weeks!

So now that I have time to reflect on the last 2 weeks....I just ran into a wall, came to a crashing halt and had a little bit of a break down. I have to say the start of this year has been hell and I pray to the good Lord that it will get better. One open heart surgery was enough but 2...and barely a month apart. it has been just a whirlwind and I have lost my calm cool collective-ness a few time. I thought we would have a few months, or at least a few weeks. The next thing I knew my precious baby girl was no longer in my arms, her eyes were no longer searching for mine, her cry no longer reached my ears. I heard monitors alarming, and doctors telling me how sick she was. How did that happen? When did it happen? and how did we not catch it quicker? But wait quicker...we were only home 2 1/2 weeks....I don't know which is worse, her original diagnoses or what we have on our plate now.

She was originally a HLHS/DORV baby with the VSD,Co Arc,and Dextrocardia.....well that was bad yes...but we lost the HLHS/DORV, now we have Aortic Stenosis/Left Ventricular Outflow Track Obstruction......with the HLHS we were looking at 3 surgeries...3.....now we are looking at surgeries for the rest of her life. And here is the catch, they are cutting the tissue away, which will inevitably grow back. There is no way to stop it, there is no way to make it not grow back. When will it happen? we don't know...her heart is like a ticking time bomb.

How do you explain that to a child...how do you tell them that there is no way to tell when the next surgery is...and we just have to pray and keep our fingers crossed that we will catch it in time before it gets to bad.....I don't want to say what type of a life is that because at least it is life. But I want to scream how unfair all of this is. How can others not know about any of this? How can doctors not post anything in offices about this. Granted there is no way to know for sure until the baby is born...but still, parents should be aware. I have been on both sides of the coin, I have known ahead of time and then I have been smacked in the face with all of it....I would take the knowing ahead of time.....I can at least get my barrings, I can cry it out...collect myself and get the information I need together and then walk into things with my head on straight....not knowing was sickening....The information was overwhelming, you try to process what the doctors are saying over your grief and you just cant retain the information because it goes into your head and jumbles about and before you get a chance to pull yourself together long enough to write it down, you are overcome by emotions again.....you just are so overwhelmed.

Then the surgeon comes out....after 9 hours of waiting....and he looks at you...with a defeated look in his eyes and says the word...the next 24-48 hours are crucial...IF...she makes it through....your heart drops, you grab the wall for support and all he can say is he is sorry for the bad news but it was a lot worse then any of them thought it was. You put on a brave face....you gather your courage to tell the rest of the family while remaining strong...and then they tell you, you can see your precious child now. Bracing for the worst, you walk into the room and the child your remembered seeing 10 hours before that doesn't resemble the child laying in the bed before you with their chest open and tubes and wires hanging from everywhere. you hear the nurses says that your child has become the sickest baby on the floor and your heart drops even further...doesn't anyone have hope besides you? Doesn't anyone have faith besides the parents? Medical technology only goes so far....the rest is in Gods hands and the patients.

Finally night came and I sat down...I thought I will close my eyes for a few moments......a few moments ended up being 9 hours.....which I was glad I got because according to her nurse she was touch and go all night. Our favorite nurse went home that morning but got no rest because she was so worried about Lily. She came in and rushed over to the her day nurse and asked how she was...and called throughout the day.....I sat next to Lily the whole day....just sat and prayed....as much as I have always known this has always been in the Lords hands you cant help but plead with God and beg him not to take your precious child who's finger you are holding. Tears where my constant companion, I sang, I rocked....and prayed....48 hours later the doctors couldn't believe the improvements she made. The surgeon said he couldn't believe how well her heart was....it was still going to be a long road but we were over the hump for right now.

A couple days later she was trying to breath over the breathing maching....lol...stubborn child...she was saying....you cant keep me down!" Her arms started to flail around....time for the restraints....oh how quickly her temper came back...they had to keep her constantly sedeated...lol...finally the day comes to close her chest.....all was going well....then her right lung collapsed...we got fluid in the lung....they had to place a new drainage tube on that side....fluid began to build up behind the heart....they started to rotate her from side to side to get it to drain....the surgeon comes and tells me they are going to remove the tubes in her heart but there are risks involved...he said if he pulls them and the bleeding doesn't stop they will have to go back in, crack the chest, put her back on bypass to close the holes....well...Lily wouldn't have made it at that time through another bypass....she barely came off of it as it was......so once again...you begin to pray....you shed tears of fear and frustration......Dr.Cleveland(surgeon) comes and tells me she came through with flying colors...you breath a sigh of relief....but then a couple days later she develops a cold...so much congestion...you watch the O2 saturation's and your heart drops as you watch it go lower....the oxygen gets turned back up...suctioning becomes an hourly process....she screams...your heart breaks...and you turn your face upward and ask silently when this is going to get better.....take a deep breath...whisper words of comfort in her ear for both you and her....start to sing to stop from crying....she calms and so do you....you made it through another day.....The day comes to start food again...you are so excited to nurse....she loved it so much....but wait...she isn't suckling like she once was....she starts to throw up...her o2 Sat's drop again....she cries and so do you....the one comfort she had is now gone....bottles are a no go....back to strictly NG feeds....but wait...60mls an hour starts to be to much....so we push back to 60mls over an hour and a half....but she is still throwing up....so we decide to change formula seeing mommy no longer has enough breast milk for every feeding....no such luck...even the pregistamil is still to much...so now she is on a continuos feed of 20ml an hour.....but you know she is hungry, she sucks the paci with a vengeance but it you offer the bottle she rejects it....damned if you do and damned if you don't.....you mutter a few curse words under your breath...why does she have to be as stubborn and her mother...

The doctors get your hopes up and say you will be going home this weekend...but then come in and let you know it will most likely be the middle of this next week closer to next weekend.....we are still going through with drawls, and not tolerating feeds...why would mommy think that her precious little girl is coming home already......why would mommy want to get back to a regular routine....Its not like it hurts when Lucas and Austin scream and beg for mommy to stay and play....to cuddle with them, to read them another story....its not like it doesn't hurt when Austin says he doesn't like baby and trys to push her away while mommy holds her......How do you explain that in time they will understand...how do you make yourself feel better as you walk away from the rest of the family to be with the one that needs you most right now....the constant guilt is almost to much. You wonder to yourself when you are just going to fall down from all the stress and guilt you have from all of this....but you never do fall...no matter how lost you are...no matter how much is on your plate of life...you make it through....why....because God spared an angel....and that angel is the little baby laying back in the bed at the hospital.....The Lord whispers to me to trust him, and to remember that he will guide us, ALL of us, in our time of need.....to trust...and have faith.....so all left that I can do...is pray...trust, and have faith......that's all left to do......!

What is a CHD?

Written by: Stephanie Husted.....

You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked...`"What' a a CHD?" I could quote terminology. .. There's stats that I could give... But I would rather share with you... A mother's perspective. What is it like to have a child with a CHD? It's Lasix,aspirin, Captopril. ... It's wondering... Lord what's your will?... It's monitors and oxygen tanks... It's a constant reminder...to always give thanks... It's feeding tubes, calories, needed weight gain... It's the drama of eating...and yes it's insane! It's the first time I held him...(I'd waited so long) It's knowing that I need...to help him grow strong... It's making a hospital...home for awhile... It's seeing my reward...in every smile. It's checking his sats...as the feeding pump's beeping... It's knowing that there... is just no time for sleeping... It's caths,x-ays and boo boos to kiss... It's normalcy...I sometimes miss... It's asking...do his nails look blue? It's cringing inside... at what he's been through. It's dozens of call to his pediatrician. .. (She knows me by name...I'm a mom on a mission) It's winter's homebound... and hand sanitizer... It's knowing this journey...has made me much wiser. It's watching him sleeping...his breathing is steady... It's surgery day...and I'll never be ready. It's handing him over...( I'm still not prepared...) It's knowing that his heart... must be repaired... It's waiting for news...on that long stressful day... It's ...praying.. .it's hoping...that he'll be okay. It's the wonderful friends... with whom I've connected... It's the bond that we share...it was so unexpected.. . It's that long faded scar... down my child's small chest... It's touching it gently...and knowing we're blessed... It's watching him chasing...a small butterfly... It's the moment I realized...I' ve stopped asking...why? It's the snowflakes that fall...on a cold winter's day... (They remind me of those...who aren't with us today) It's a brave little boy...who loved Thomas the train... Or a special heart bear...or a frog in the rain.... It's the need to remember...we are all in this plight.... It's their lives that remind us... we still need to fight! It's in pushing ahead amidst every sorrow... It is finding the strength to have hope for tomorrow. And no...we'll never be the same... It's changed our family... This is what we face each day... This is...a CHD.

What it means to be a Parent of a CHD child

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