We had our consultation today with the surgeon at Children's Hospital who will be doing the baby's surgery - Dr. Vaughn Starnes (a giant in the field, from what I understand - we're incredibly lucky). While we were there, we also got a tour of the Cardiac ICU and got an idea of what to expect. I have to be honest, it was overwhelming - I'd seen pictures online of babies pre and post surgery, but actually being there and seeing the babies in the beds was a bit tougher to handle. But I'm glad we went - I'm really glad to have seen it now rather than immediately post-partum.
The surgeon was great - very informative. He didn't see anything in the baby's records that would put baby at a higher risk than any other HLHS baby or make baby a bad candidate for surgery. CHLA's success rate from the first surgery is 90%, which was very comforting! Then, they lose approximately another 10% or so of babies between the first and second surgeries (the second surgery will be somewhere between 4 and 6 months), so that is really the critical period. If we can make it past the recovery from the 2nd surgery, things should be less critical.
So, baby will be born via c-section on Feb 16th, 17th or 18th and will be transferred to Children's within 48 hours. Then, baby's surgery will be on Mon, Feb 22nd. (It was a relief to find out that the surgeon's schedule is clear for that day!) Then, baby should be in the Pediatric ICU for about a week or so, and then will transition to the general pediatric floor and should be there a week to 3 weeks, depending on how well baby's feeding goes. Apparently, the critical factor in releasing HLHS babies tends to be how well they feed. Baby will be fed via an ng tube (through the nose) initially and then we'll slowly add breastmilk/formula orally - the hope is that baby will be able to catch on to bottle feeding well enough to come home sooner rather than later!
One of the harder things we learned today is that, due to the H1N1 scare, no kids under the age of 18 (other than patients) are allowed at Children's. Cedars has the same policy. So, that means that Sierra will not get to meet her sibling until he or she comes home. That's really hard for me, knowing that the baby may not ever actually make it home and if so, Sierra won't get to meet her sibling. It's also hard for me to think about being away from Sierra so much - I know it is something we will deal with and handle fine, but we definitely could use some prayer for in negotiating the specifics of how we'll work it out!
A couple of true blessings from today -
1. The surgeon's assistant was fantastic - SUPER helpful in answering all of our questions.
2. While there, we met another couple from San Diego who have a 2 1/2 year old son with Hypoplastic Right Heart Syndrome along with Transposition of the Great Arteries (generally, HRHS is not as dire a diagnosis as HLHS, but the TGA complicates things and he has had to have the same surgeries our baby will have). He had the Norwood and the Glenn and is scheduled for the Fontan (the final surgery) on January 28th. It was such a blessing to see a super cute, active, otherwise healthy and thriving child with one of these conditions! And the couple was SO nice and gave us such great advice. I know it was totally God's hand putting them in the waiting room on the same day as us! If you could keep their son Nathaniel, in your prayers, as he undergoes his surgery later this month, I'm sure they'd appreciate it!
Thanks for the continued prayers - I know they're helping SO much!!!
A big hug to you dear Amy and Dusk - this blog will help all of us with Babyline to feel close as we join our prayers to yours. Your little one is cherished by each of us and your love and trust in God is so encouraging.ReplyDelete
Much love, Karen Sturgeon
Amy and Dusk,ReplyDelete
Your strength is inspirational!!! Will and I are lifting you all up in our prayers as are our friends and families. We are here for you and hope we bring you a small amount of comfort to you.
Amy & Will
I am so glad to be able to share this blog with my prayer warriors who will be lifting you and your baby up every chance they can get. Take comfort in knowing that people all over the country are praying for a mircle and for Gods will to be done on this little soul.
Laura Dew Roth