We had quite a long day at UCLA today. We got there for our 10:30 appointment with Mia's cardiologist. That went well and she's looking great as far as he is concerned. The sad news is that Mia was weighed today and she hasn't gained weight since the surgery 3 weeks ago. As a result we are going to up her formula to 24 calorie and try her on some solid foods to see if that will make a difference. So please pray for her feeding and weight gain. It's not that she gets tired when she feeds, she just doesn't want to take anymore. Pray that her appetite would increase and that she would tolerate 24 calorie formula.
We then went to see the craniofacial team. The CT scan Mia had a few weeks ago showed them that one of her sutures in front (the metopic suture) has fused early. It's causing her forehead to be pointy. They definitely want to do surgery on this and they want it to be her next surgery. The ideal time to do this surgery is from 3-6 months of age. More on the surgery in a bit... They also told us that the radiologist looking at her CT scan showed that she only has 1 front tooth. Because of this and the fact that her eyes are close set they want to run a different genetic test on her. Again our prayer is that it would be normal. We did talk with an orthodontist who told us she has seen children with 1 front baby tooth who end up with 2 front adult teeth...so pray that is what happens with Mia.
We met with the doctor who will do the actual surgery on Mia. It is quite a process and a bit unnerving to think about it. They will do a zig zag incision behind her hairline to get to the skull. That way when her hair grows in you won't see the incision. They will then remove the two front plates...yes, literally take them off of her head and set them aside. There is a long rectangular plate that runs across your eyebrows and they'll then reshape this plate. They will then replace the two plates in the proper place on her head. They have done this enough to know they need to over correct the adjustment because the skull has a tendency to want to go back to its original shape. So at first she might look extremely flat headed in front, but it will eventually work itself into the proper shape. As far as recovery, they said that they'll just wrap the head for a couple of days and that she won't need to wear any type of helmet...which is amazing to us. She'll be really swollen they said and she'll need to be in the PICU for a couple of days and then on the floor for a couple of more days. 4 days total and then she'll probably be able to come home. It's overwhelming to think of what's going to happen to her, so pray that everything would go well. Pray even now for her healing.
So when are they going to do it...they want to do it in about 4 weeks, but there is some scheduling conflicts they need to work through because their first available is the end of May. Anyway, pray for the scheduling and the right time for this to happen.
We are still waiting to hear from the intestinal doctor so we'll give you an update on that when we know more.
One last thing, Mia gets her last synagis shot tomorrow morning, pray that she would tolerate her feedings after that and do fine with the shot. (She tends to not eat well after having shots for a couple of days...)
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