A Waiting Game

If you read yesterday's post then you know that we had the final appointment with our pedi cardiologist at Texas Children's today. Dr. Ayers was great and so thorough, despite Caroline being the most active she has ever been during an echo. Here is what we learned today...

It looks as though surgery is definitely in our baby's future. It's no longer a matter of if she will have surgery, but when she will have it. We got some good and some not so good news during the appointment. I'll start with the good. Caroline's heart continues to have proper blood flow through all four chambers and there is no evidence of any back flow. Fantastic news! The left side is still only showing growth in the 5th percentile of where it should be (boo!) but it has not "flat lined." This means that, although the left side is still very small in comparison the right, it has shown some growth (yay!). Caroline is now considered a mild case of Hypoplastic Left Heart Syndrome which means that unless something crazy happens in the next few weeks then she will not have the three open heart surgeries typical of HLHS babies. Praise be to God!

Now on to the not so good news. Dr. Ayers has confirmed that Caroline has another defect called Coarctation of the Aorta (click on the link to learn more) and will need surgery to correct this condition. We knew this was a possibility at our last appointment so it was no surprise to hear about it again but it was still very hard to swallow the news. Dr. Ayers then went over plans of what to expect on delivery day.

Once Caroline arrives she will immediately go to the NICU for another echo of her heart. She will also be put on a medication called Prostaglandin, which is used to keep the PDA artery open. This is the artery that supplies blood from the heart to the rest of the body when baby is in the womb. In a healthy baby, this artery closes about a week after birth and the heart begins to function properly on its own. If Caroline's PDA were to close off completely the aorta would begin to narrow and blood flow to her extremities could stop. So she will be given the medication to keep the PDA open while doctors monitor her and look for symptoms of the aorta beginning to close. This basically buys her doctors a little time to watch and wait for symptoms to surface. She can't stay on the medication for very long. If symptoms are evident then preparation for surgery will begin. Basically, the first week of our baby's life will be a waiting game. If no symptoms arise within a week or so then she will be sent home and monitored closely but there is no doubt that somewhere in her future she will have surgery. It could be 2 months, 6 months, a year...there is no way to tell yet. It scares me to death to think of taking her home without the problem being corrected!

Dr. Ayers then went on to explain that in some cases other problems will surface once the aorta is fixed but there is no way of telling if that will happen at this time. I didn't like hearing this but appreciate her honesty and know that she was just trying to prepare us so there are no surprises. We would like to ask for your prayers as we await the arrival of our little miracle baby. Specific prayers needed are:

• for Caroline's heart to continue to have proper blood flow and no back flow.
• for the left side to keep growing and not flat line.
• for no underlying conditions to surface after surgery.
• for the doctors and nurses who will care for her.
• for complete healing of her heart.

I have been on the emotional roller coaster of my life today. I've felt sad, angry, happy, thankful, blessed, hopeful, full of faith, uncertain.....the list is never ending. I've cried, smiled, cried some more and praised God for the healing he has already blessed us with. At the end of this crazy day I guess what I feel most in my heart is blessed. Blessed to live where I do so Caroline can get the best care possible, blessed that God led us to our amazing doctors, blessed to have family and friends who support and love us, and blessed that God chose us to be Caroline's parents. I know He has big plans for her and she will live an abundant life here on earth with us. One day we will look back on this experience and be able to share it with Caroline and she will know what an amazing little miracle she is.