The first surgery waiting game

Every time we have met with both our fetal cardiologist and now Mae's new pediatric cardiologist, they have talked about the "first surgery" (as we have been calling it), but they have always been very optimistic that she will not need it. Once she was home and her oxygen levels seemed steady and she was doing so well, we had assumed that she would not need the first surgery. In my mind I was planning to getting back into a routine quickly, planning play dates, preparing for a normal summer and mentally not preparing for surgery until fall. Until then I was planning on having my normal, "healthy", baby girl.  

On Monday we went for her weekly follow up. Mealyn's weight gain has been great! More than an ounce a day, she was up to 7 pounds 5 ounces. However, her nurse felt that her oxygen levels were lower for her and decided to get another echo and EKG. The echo confirmed the nurse's suspicions, her pulmonary blockage had gotten worse. Maelyn's doctor was out and so we saw the doctor on call, who I had never met before. This doctor came in and just said, "she is going to need the surgery". No time frame, just it is coming. I shouldn't have been, but I was taken back and confused and a little shocked. I was informed that she will need a shunt placed between her pulmonary artery and aorta, plan on a two week hospital stay, and we will need to take her in for surgery when ever her oxygen levels are consistently 75%. Needless to say I was upset when I left. Not that this was new information, but I was not planning on ever hearing it. My mom had already cancelled her flight back out here because we did not think the surgery was going to happen. But even now, we don't know when the surgery will be. It is all a waiting game. Wait and see what happens to her oxygen levels. Wait and see when the doctors decide it is time. I don't know how much notice we will be given before it happens. It might get scheduled or they might just decide to take her in immediately, it all depends on what happens in her little heart. 

All week we have been praying for no more changes. If there are no more changes she could still get away without the first surgery. However last night and this morning her oxygen levels have been slightly lower yet. I'm afraid she is getting closer to that 75%, and quickly. I am praying that she isn't and especially that we can get through the weekend without her dropping that low. She has an appointment on Monday that Tim is going to come to with us. She will have another echo to check her blockage. Mealyn's doctor will be out again this week, so again, we don't know what doctor we will be seeing. Depending on the echo and what they get for her oxygen level, they might schedule the surgery. For those who are interested, the "first surgery" as we call it, is actually called the Blalock-Taussig Shunt. Regardless of if/when she has this surgery, she will still be having the Glenn surgery this fall. 

Enjoying bath time.
That chest, pre-scars, perfectly holding her special little heart.

Please pray for her pulmonary blockage and her oxygen level. Pray for this upcoming surgery. Pray for peace and preparation. This mommy is not ready to hand her newborn over. Pray for timing. Pray for the boys and my mom who will be coming back to watch them for us. Pray for Tim's job and time off from work. Pray for the nurses and doctors and surgeons.