Begin Day 1 of life outside of the NICU

Although it was sad to leave our NICU family, Wesley is ready to move on!!! He has done well on the home ventilator, and Baylor was ready to have his cute little face there. The transition went surprisingly well. After taking his first professional pictures at the NICU, we loaded up and headed out around 9:45 on Wednesday morning. There are a lot of differences between the two locations, but we will adjust. I already miss my daily check ups. I called this afternoon from work to see how he was doing. I'm so used to getting a full description of his day, but all I got today was, "He's doing fine." That was a little rough, but there are more kids per nurse at Baylor than Presby, so I guess that is to be expected. I feel very positive about the transition and can't wait for that little guy to be home!!!! We met several of the staff on Wednesday, his nurse, assistant, respiratory therapist, nurse practitioner, and other staff (I don't remember their official titles off hand). John and I are each expected to spend 2 to 3 hours a week training, then have a few 24 hour sessions where we provide 100% of his care (and this is separate, not together). The respiratory therapist there yesterday won me over from the start. Within an hour of Wesley being admitted to Baylor, they changed his trach. One of my biggest concerns was that Wesley loved to pull on anything attached to the trach, including the ties. So he would always untie the part holding the ventilator attached, and you can imagine what happened from there. They use a different brand of trach at Baylor which is more flexible and the ventilator locks on so there are no additional ties. It solved a major problem that I was concerned with. He is now up to 13 lbs, 5 oz!!! Now we just have to find a mobile like the one he had at the NICU, and he will be a happy boy!!!!

About 1 hour before the move:

Baby in a box:

Got my seat belt on:

So much different than the last time I saw you through those holes:

Leaving Presby..... we will miss you!!!!

Unloading at Baylor:

Welcome to Wesley and friend:

Getting all settled in:

High five Daddy.... we did it!!!!

All worn out:

On the Home Vent!!!

Wesley was moved to a home ventilator yesterday. He did well yesterday, we just need to see how he does over the next few days. If he continues to maintain good numbers, then we may be moving to Baylor's children's home in the next week. We will just have to wait and see what happens. They did start him on some steroids on Sunday to try to bring down his oxygen needs. He was needing around 50% oxygen, and the pulmonologist wanted him no higher than 40% to be moved to Baylor. It has made an impact on his oxygen needs, but the problem is that he may not maintain those lower oxygen needs once he is off steroids. That was the doctor's primary concern. We will just have to wait and see. Wesley weighs about 12 1/2 lbs now but will probably be gaining weigh quickly because they have put him on a higher calorie food to help grow. The idea is that the quicker he grows, the more new lung tissue he grows. As of this past Monday, he is officially 7 months old. We are so ready to have him home!!!

Baby's First Easter

Today was baby's first Easter. All the nurses loves him in his little outfit, but he didn't much care for the bunny hat. He had little bunny feeties and a bunny tail. Check out his pictures below.

Video

I haven't been able to go visit Wesley since Tuesday because I've been sick. I miss him like crazy, but the nurses are taking good care of him. This is a video from last Sunday, just thought it was cute. Overall he is doing well. Still no date for him to move to Baylor, but he is moving that direction. He weighs about 11 1/2 lbs and as cute as can be!!!

Happy Boy

Doing Well

The recovery process seems to still be going well. Wesley had his first trach change today and also had his feeding tube replaced with a Mic-key button. He seemed to tolerate everything ok. He has lost weight over the past few days though, he weighed as much as 11 lbs 15 oz, but is down to 11 lbs 3.5 oz tonight. They did remove his broviac IV on Tuesday since it was not fully necessary any longer. He is back on full feeds, but they are giving those to him continuously to avoid putting any stress on him right now. All of his medications are being given orally as well. The hospital confirmed today with Baylor that they want him on a home ventilator with his oxygen needs no higher than 40% before they have him transported there. He is still on a conventional ventilator, but he could very easily be transferred to the home ventilator any time now. His oxygen needs were at 40% yesterday, but he was needing a little extra help tonight and they were up to 60%. Overall though, he seems to be doing well and moving in the right direction. I'm so ready for him to finally come home!!!!

Recovery

Wesley seems to be recovering well from surgery. I actually got a few little smiles out of him last night. He is still on a lot of pain medications, so he is sleeping a lot, but he is very alert during his awake times. He actually gained weight after the surgery, but most of it is fluid retention. He weighed in at 11 lbs 8 oz. Here are a few pictures from yesterday: