Our sweet Gracie -- a few days ago at her pre-op at MUSC. For a "heart baby" she really is all heart. Waving and blowing kisses to everyone including the pictures of people on the computer screens.
On our way to Charleston! Deja vu, all over again.
In Charleston. The day before Gracie's big surgery.
We are back in Charleston.
Actually, we were back in Charleston just a few days ago for Gracie's pre-op. It was at that time we had the opportunity to meet with Gracie's surgeon, Dr. Bradley, to get it directly from him what he thinks will need to be done for Gracie. According to him, Gracie's anatomy is "complicated" and he won't know 100% of what to expect until he opens her up. The echocardiograms, heart cath, and CT scans provide a lot of information, but even the best scanners are only scans at best. Having said that, he does have a plan, and for the moment, his plan will be to solve Gracie's heart defect with multiple surgeries. The first step being to install a shunt connecting the heart to (what he thinks) is an existing, but unused, pulmonary artery. The hope will be that over time, the extra blood flow to that artery will encourage it to grow and strengthen into a much more functional pulmonary artery thus avoiding the more complicated unifocalization procedure of combining the collateral arteries into a makeshift pulmonary artery. But this means that after tomorrow's (initial) surgery, Gracie will still not have ideal oxygen levels and will still be in need of subsequent surgeries. We will pray that the right path will be taken tomorrow.
Gracie's heart condition.
Gracie's heart condition is called Tetralogy of Fallot with pulmonary atresiaand although it is a rare heart defect affecting 5 out of every 10,000 babies, she's in good company. Normally, babies born with this defect need surgery fairly soon after birth. The fact that Gracie is now 3 years old without any medical intervention at all is amazing all on its own, but it also poses a significant risk from all that we understand. She really labors in her breathing and her oxygen saturation levels (SATs) have been dipping dangerously low in the 50s and once into the 40s while at the cardiologist office. When she had her blood drawn at the pre-op, it came out very dark (almost black-like) and thick -- characteristic of oxygen-deprived blood. It was rather unsettling. How anyone can survive like that is a wonder.
Bottom line is that this day couldn't have come soon enough. We have a lot of natural anxiety of our daughter entering open-heart surgery tomorrow. We know that the minute we step foot in the hospital Gracie will not like being there. We know that the recovery will be difficult, as was with Martin, and we are definitely not looking forward to that. But on the other hand, we know she desperately needs this intervention. This is what we've been waiting for ever since we decided to adopt her into our family. She's finally getting the medical attention she has needed for so long even though when we were first introduced to her, China's doctors diagnosed her as being "inoperable." It's a strange emotional tension of positives and negatives.
We love her and she loves us.
Gracie is a blessing. She has integrated into our family amazingly well. The kids absolutely adore her and she loves the kids. She and Martin are buddies and Martin will give Gracie unprompted hugs and kisses almost constantly. Each morning, Martin is calling for "A-cey" and they do everything together. Anyone who knows Martin, knows that he's all boy. Martin can be rough and loud. Gracie is gentle and quiet. Martin is decidedly messy and likes to bite straight into his cake not waiting for us to cut a slice. Gracie on the other hand hates having even a speck of food on her fingers. And so Gracie is just what the doctor ordered to balance Martin out. Yes, it can be chaotic and exhausting at times, but we wouldn't trade it for anything.
For a heart baby, Gracie is all heart.
It may sound cliche, but Gracie really is all heart. I've never seen a child more "lovey dovey." Really! She is constantly waving and blowing kisses. She loves giving the kids hugs and just loves being with them. She loves scrolling through Mommy's phone and looking intently at all the pictures of the kids. When she sees Mommy or Daddy, she'll kiss the screen! It's true. She will kiss photos out of an album. She will kiss her little toys. She's just all heart. Even when we were at the pre-op, after a long grueling day, she was still blowing kisses and waving to the nurses. She was even waving to the pictures of smiling people on the screensaver of the computer screen!
The surgeon will be repairing her heart tomorrow, bright and early at 5:30am. There's a sense in which a part of her heart needs no repair at all but works perfectly well. The part that knows how to show love and affection. Probably the part that matters most. The Lord has given her an extraordinarily loving heart and we can't wait to see what He has in store for her.
Prayers for all of you I have been in your shoes with 2 of 3 of my kids, one with a VSD and my son with TOF. He is 18 now and doing well, he too, has had multiple surgeries. I will pray that your beautiful baby girl sails through this with no complications.