A quick update before I head back to work for the weekend:

I have spoken with Denise, our nurse at CHOP, twice since our initial visit.  We needed a little bit of clarification because at our initial visit, the doctor stated that these babies typically pretty stable at birth because the ductus arteriosus is still open (this is called a PDA - "p" for patent), so we weren’t sure how much time we would have to snuggle baby girl right after birth. Denise told me that we would only have her for a minute or two following birth before she is whisked away to get catheters put into her umbilical vein & artery (& / or a possible peripheral IV) so that she can start getting prostaglandins ASAP. Obviously, I won’t be able to nurse her or have the initial bonding time that we were hoping for.  : (

The initial surgery will happen when she is stable enough to endure the surgery & there is an OR available. Obviously, with open heart surgery, baby girl will need lots of antibiotics and other people’s blood products.  If all goes well, she will have two - three weeks at CHOP post op.

On a positive note, if Gavin is healthy, he will be allowed to go and meet his baby sister there during that time.

Anthony and I will have to look into places to stay in or around the city during this three week period as we will not be allowed to sleep in the ICU with the baby.  The nurse advised that there are several Ronald McDonald Houses in the area & a few other options that we plan to look into as the time draws closer.  Our pets already have accommodations - Mom A has graciously agreed to watch both of our cats & Maria / Mom D are opening their home to Jackson for a few weeks. (Thanks so much!)

I have a tentative appointment to spend the whole day at CHOP on August 4th to have both myself and baby girl evaluated for delivery there. If I am a candidate to deliver there, they will induce us after 39 weeks. We are praying hard for a full term pregnancy with no other complications for mom or baby, so that she can have every chance to as big and strong as possible.  We are also praying NOT to have a baby on the turnpike on our way to CHOP or to end up delivering at LVHN.

We received a letter in the mail from Dr. Rychik explaining the full details of our baby’s defect & I (once again) got stressed about other anomalies that might be present.  I called Denise, who advised that sometimes female babies with this condition have Turner’s syndrome (which is a defect where the baby only gets one copy of the X chromosome instead of two).  I thought that I remembered this being part of the blood test I had at 12 weeks, so I called Maternal Fetal Medicine, who advised that this was one to the things that they looked into.  While it hasn’t been completely ruled out, this is an unlikely diagnosis for our baby.  The genetic counselor told me that more likely, if our baby has any other problems, they would be the result of small deletions / additions to a single chromosome. She also assured me that the HLHS is likely the only defect we are dealing with.

Here are our current prayer requests:
1.  Safe, full term pregnancy for baby girl
2.  No complications or other anomalies at birth
3.  Ability to take the time we need off work
4.  Wisdom and skill for our sweet girl’s treatment team
5.  No turnpike baby. : )

I will continue to share information as we receive it.  Thank you for all of the love & support you’ve showered us with. We sincerely appreciate it!

We are looking forward to a restful break with our family at the beach next week. : )