So I feel nervous even posting this, in fear that I am going to jinx myself, but we seem to have a plan for discharge. Grayden has had a great past few days without any episodes of the oxygen desaturations and he continues to eat well so the plan for discharge as of now is Monday morning. He will have to pass his car seat test tonight, which means he cannot have any oxygen desats under 88 for three hours while sitting in his car seat. They do this to ensure that he will be breathing well on our journey home. Even though the car ride is technically 12 hours, we will need to stop at least every three hours so that he can eat anyways so that is as long as he has to pass for. If he does not pass his car seat test I am told that it will not keep us here longer, it will just mean that they will be sending him home in something called a car bed. I think that this just allows him to lay a little more flat while riding in the car.
If anything changes in the next 48 hours, for instance, if Grayden has more episodes of desaturations then they would like to perform another test that would basically monitor him for 24 hours to see if he is having any reflux or if they can determine any other reasons that would be causing him to have these desaturations. As we said before, the doctors continue to think that it is just newborn baby issues that probably all babies have, but since Grayden in connected to monitors that happen to pick these episodes up, they cannot ignore them. I am thankful that they are being on the safe side and making sure that he is okay, I just really want to go home as well.
Austin and I are hanging in there and we really appreciate every one's kind words. We know that we are not alone in this journey and it helps to know that many of you have been in these same shoes before as well. As we sat in the NICU yesterday and looked around at the other little babies that are in our same room, we really feel thankful about how well Grayden really is doing.
Yesterday was supposed to be his birthday and even at that he was going to be three weeks early. So to imagine how far he has come in his short 20 days is really pretty incredible. He is doing so well considering all that he has had to face (even prior to being born).
We will be updating when we have more information and hopefully Monday I will be posting that we are on our way home. We plan to drive straight through, with many stops for feeding; however we will be playing it by ear and if we get too tired we will stop and spend the night in a hotel so that we can make it home safely.
Hope to see everyone really soon!! Grayden can't wait to meet all of you!!
Boulder Ridge Zoo
1 week ago