Learning More (from yesterday March 5th)

Today was a down and up and down and up day. When we got to the hospital Mia's nurse told us that she was doing pretty good all morning long. However, while we were talking with her we saw that Mia was starting to have issues with her CO2 and her oxygen. Rachael and I went out of the NICU for a little while but when we came back we saw that Mia was doing MUCH better. It turns out that Mia's nurse had adjusted and re-taped her breathing tube and almost instantly Mia had gone from just okay to doing very well.

The lesson learned here was that Mia might be affected by the breathing tube more than we originally thought. At this point Rachael and I are getting close to a cross road. We have been thinking about putting the trach in Mia so that we could be much more active in holding her and stimulating her. Our concern though has been that we don't want the trach to go in it makes it that much easier for the doctors to say that she is capable of going home. We want to make sure that they would give her adequate time after the surgery to see if she progresses enough to be weened off of the vent.

One good thing we learned today is that Mia's muscle biopsy came back normal. That is a huge relief because one of the conditions being tested for was a game over scenario. That is a huge answer to prayer that Mia does not have those issues. In a way, it's kind of ironic that everything the doctors are testing for on Mia always seem to come back normal. Rachael and I have both been wondering if they are barking up the wrong tree and not just looking at the simplest explanation that the hydrocephalus and the seizures have slowed down her development. At this moment only God knows what Mia's condition is.

So a lot of you might be wondering where all of this leads and what our thoughts are with Mia's long term prospects, especially compared to where we were three weeks ago. Let me start by trying to clarify where we were then and where we are now. Three weeks ago when Rachael and I had come to a point that we felt we might have to let Mia go there were several factors involved. The first factor was the current prognosis that Mia would never be able to breath on her own because she could not detect the CO2 in her body. The second factor was that at that point, Mia had been riding the ventilator almost non-stop for almost two weeks with barely any breathing on her own. Third, Mia appeared to be getting worse for a while and we didn't want to prolong her suffering any longer. To Rachael and I, our prayer was that God would either heal Mia or that he would take her from us. We did not want to have to make the choice to let her go. During those couple of days it looked like Mia was going to go on her own and that we had our answer to prayer.

However, God has a funny way of putting you on the right track when you are on the wrong one. Rachael and I both felt that Mia only had a couple of days left in her but one morning while I was sitting in front of Mia's bed and praying something happened. A man that we had never seen before happened to walk in and look at Mia and while he was there he asked me if I had any questions. I remember looking at him, not recognizing him, figuring he was just a technician and telling no I did not have any questions and we knew where things stood (as far as having to let her go). After I said this, this man stood by Mia's bed for a couple of minutes and just watched her and at this point, God stepped in and changed the game.

I suddenly got this thought in my head that I should get up and talk to this person so thats what I did. I got up and started off the conversation by asking this man what he thought of the apnea tests that they were doing on Mia. What this man said next changed everything. He said that in his mind, the apnea test wasn't a good test for Mia and that it wasn't proving anything for her. He said that out of the 15 babies on ventilators in the hospital at that moment he could give the apnea test to all of them and probably 12 of the 15 would fail. He encouraged us that what Mia needed was time to build up her strength and that we should give it a few weeks and see what she did. If you haven't guessed who this man is by now, it was our very favorite Doctor Piroozi. If it was not for him Mia might not be here at this moment.

The other part to this story is that as generous and patient as he is, even he has his limits and realizing that sometimes you have come to the end of the line. One of things I don't think we mentioned is that we heard from one of the nurses that before Mia started taking breaths on her own consistently that even Doctor Piroozi was within a couple of days of telling Rachael and I that we were at the end of the line. Thankfully he was willing to give it more time even when a lot of his co-workers had decided that there was nothing that could be done. Through his direction and patience, we have seen Mia go from not breathing on her own at all to almost always breathing on her own (with assistance from the vent of course).

Now that Mia has started to initiate breaths on her own and we have seen that she is capable of breathing off of the vent, the game has completely changed. We have seen what she has been capable of doing and how much she has progressed in just a few short weeks and we feel that we need to trust that she will continue to improve with more time. Now, we still do not know if Mia will ever be able to be off of a vent 24 hours a day but we have seen her do it for 1 hour and we think there is a lot more in her if she is given the time.

Now many of you might be wondering why Rachael and I would not want to take Mia home on a ventilator at this stage but would rather put her in a facility. The first issue is the level of care that Mia needs and the equipment we would need to have. It's not that Rachael are afraid of taking on the task, but rather we would be fearful that one simple mistake or power outage and we could easily lose Mia just by an accident. In essence we would be living in continual fear day by day and it would wear us down to the point of exhaustion. The other factor is that if Mia were to come home, it would be much more difficult to try to ween her off of the vent because this can only done with the supervision of doctors that know what they are doing.

So, Rachael and I are trying to buy as much time at the hospital as we can for Mia. The more time in the hospital, the stronger she will get and hopefully the better the prospects of weening her off of the vent. If we run out of time at the hospital, Rachael and I are going to start looking for long term facilities that specialize in weening babies off of vents and that would be able to take care of Mia without the time constraints of the hospital.

Now, we still don't know where this is all going. Mia does have her up days and her down days. Rachael and I know that anything can happen at any time and Mia could very easily start going down hill and not coming back. However, given what we have seen so far we are hopeful and praying that one day, Mia will be able to come home free from a life on a machine.

I hope the above information will help all of you to understand where we have been and where we feel that we are headed. Thank you to all of you for your continued prayer and support. Rachael and I have been carried through this by our faith in Jesus and knowing that there are so many people lifting Mia up before him.

Robert