Yesterday was Milo's official due date, June 1. We had hoped that he would be going home by this date. The due date is usually the time that a lot of NICU babies are hoping to go home, and we were told it was a good date to shoot for. However, it was not to be.
We found out on Thursday that Milo's aorta was becoming a problem again. We were told before the surgery that a small percentage of patients would have to have additional procedures after the initial surgery. He was looking fine for the first week, but in the second week his blood pressure was getting really high in his right arm and head, while the other pressures and pulses were getting lower. This showed that there was some new narrowing. The cardiologist said that sometimes when they repair the area, it becomes tight again from stretching the surrounding tissue to cover what had to be removed. So all this means at least one more procedure, and more time in the hospital.
The procedure is to put a balloon in the aorta to stretch out that area, hopefully permanently fixing the problem. If that doesn't work, there are more options, but it would require more surgery. They are hoping to do this in about four weeks, which will give the site of the previous surgery time to fully heal. And they think that Milo should spend those four weeks in the hospital. We actually agree with this, because if his blood pressure to his upper arm and head get too high, or the other pressures get too low, it would be an emergency situation. I think we would be panicked about this every second if he were to come home. With him on monitors at the hospital, they will be able to know the second that those pressures get out of line.
So, that was the bad news, but he has lots of good things going on too! Milo has all of his IV's, central lines, arterial lines, etc. out of him now. He is off of all painkillers and sedatives. He has started eating by bottle (reluctantly), and he can eat about half of every other meal by bottle before becoming too tired and having the rest be put through a tube to his stomach. He is still on a cannula to give him breathing support, but it is room air with just some extra pressure to help him out. We are able to hold him a lot, and can actually pick him up out of his bed now! All of the nurses and doctors love him, and he is totally adorable. It is so hard to leave him to go home every day when he looks so healthy.
We are happy because he was moved back to the PICU again last night, which means a private room and Vivienne can visit. Vivienne is constantly talking about Milo, and will point to different things in the house that she says are his. With our being away from her more than we would like these days, it just seems that Vivienne has grown and learned so much these last three weeks. She now knows her colors and knows a couple of letters by sight. Her favorite thing these days is to talk about animals and what sounds they make. It's amazing that this next week Vivienne will turn 21 months, and Milo will turn 1 month! Time is really flying!
All in all, we are doing well. Exhausted from stress and disappointed that Milo won't be coming home when we thought, but rejoicing in each step he takes towards becoming a healthy baby boy.
