My miracle baby turns 3 today!

[JStolls21405]

My  little girl turns 3 today! When I think about everything she's been through it's amazing to look at her now.  My daughter was born with multiple heart defects and needed open heart surgery to survive.  She was born with Transposition of the Great Arteries, two Ventricular Septal Defects, and a single Coronary Artery.  I didn't know she had anything wrong with her when she was born (except for a nagging feeling throughout my pregnancy that there was something wrong) and the doctors and nurses didn't even suspect anything.  We were sent home on the third day with a "healthy" baby! On the fourth day of her life I insisted that there was something wrong, and even though we had already been checked out by the pediatrician the day before I was adamant that we be seen again.  She was sleeping constantly and wouldn't wake up to nurse.  It would take an hour of talking loudly to her, touching her, taking her clothes off, rubbing her with a wet washcloth just to get her to open her eyes, then as soon as I put her to the breast to nurse she fell asleep instantly.  At 5:00 pm I arrived at the pediatrician's office and to my surprise a Dr had stayed around for us to get there.  She heard a murmur in her heart - in the grand scheme of things it can really be a very small problem, but to me it was terrifying.  She was taken by ambulance to the ER to be checked out further.  For 6 hours I waited, my baby somewhere far away getting tests done that I had know idea about.  At 11:00 I heard the news.  My daughter had a major heart defect, needed open heart surgery and would not be coming home with me.  For a moment time stood still, I thought "I can't deal with this right now, I can either break down, or I can shut off."  I shut off. A wave rushed over my body and I thought I was going to pass out, and then I felt nothing.  I turned into a zombie and my body twitched uncontrollably.  I tried to understand as the Doctor explained to me what was going to happen.  The next morning I called La Leche League because I was told I would not be able to nurse my baby until after her surgery which was planned for some time the following week.  I insisted that I be able to nurse her at-least up until a few days before the surgery and they allowed me to do so.  The day before the surgery they had another cardiologist check out her heart to make sure they didn't miss anything, sure enough, they had.  Up until this point they only knew about the TGA and the VSD, not the single coronary artery.  This was a major complication and they would not do the surgery at that hospital.  We were taken to Columbia Presbyterian Children's Hospital in Manhattan where we had one of the top Surgeons in charge of her case.  We were very lucky to get in to this hospital as they are usually booked.  I stayed at the Ronald Mc Donald house about 100 blocks away and took a taxi every morning and every night.  I would go in at 6 or 7 in the morning and stay until about 1 at night to nurse her as much as I could, then she would get a bottle of my pumped milk at night. On March 1, 2005 she had her surgery.  Dr. Q, her surgeon said, "It was a difficult surgery but everything went as planned and we are very happy with the outcome." That was the best news we could have gotten.  There were so many sick babies there, and so many parents waiting for the same news I got...some got their good news, and some didn't and it was heart breaking to hear them grieving over their baby while I had mine.  A few days later we were transferred back to our original hospital because she wasn't gaining weight, and a few days after that we were home!  She has had no other problems from this and is considered "corrected". She still has a small VSD, but the cardiologist isn't concerned, it should close on its own as she grows. Yesterday my daughter and I looked through her "hospital photo album" together for the first time, something I had been waiting to show her for a long time.  It was so special to me, though she couldn't entirely understand it all.  Even though I'm so fortunate to have had such a fantastic outcome, it's still difficult at times.  I had Post Traumatic Stress Disorder from the shock of it all and still dwell on things sometimes, but it's getting harder and harder to do when I see such a beautiful, healthy, sweet little girl! I am so lucky, and so thankful for what I have in my life.

PS what's the irony of a girl with a heart defect being born on Valentine's Day? 

 

[debra_benge]

Feb. 14, 2008 at 9:50 AM She's beautiful!  You are truly blessed!

[LadyMaya]

Feb. 14, 2008 at 10:42 AM

I can't imagine what you have been through...and to be blessed with such a little cutie.  happy third birthday to her! 

[Hey_Momma]

Feb. 14, 2008 at 1:24 PM She's absoultely beautiful!!! Valentines day is a day for hearts indeed & also a day to celabrate the birth of your beautiful baby girl!!

[sgtreganswife]

Feb. 14, 2008 at 5:24 PM She is adorable!!!!!!!!!! Blessings to you!!!!!

[wearingyourbaby]

Mar. 1, 2008 at 6:42 PM

This is a beautiful story.  I feel your pain, as my little Conner was born with kidney issues. 

Your daughter is beautiful! 

(Oh, and side note--isn't the RMH a blessing??)

[LonelyinNH]

Mar. 17, 2008 at 2:26 PM

Your beautiful daughter sure is a miracle and a blessing as well.....

[sar_goodell]

Apr. 2, 2008 at 9:52 PM

Thank God for the wonderful doc's that can fix TGA my son also was born with this and I know how hard it can be. if you ever need to talk let me know.

Sarah

[kba4ft10]

Oct. 20, 2008 at 5:25 PM

You're daughter is precious.  My daughter was born with hypoplastic left heart syndrome and has had 2 open heart surgeries.  She is doing very well.  The Lord has blessed us tremendously!