Tuesday, August 31, 2010

Day 106-110 (June 25-29)

DAY 106--

Four liters high flow. I really just can't understand it. The ENT came to look at him, and they think everything sound ok. They did suggest the idea of a CT scan of his throat and lungs to make sure everything has developed properly.
The nurses are trying to keep him as upright as possible to help him breathe better. It's frustrating to see nurse that have hardly ever had Martin, tell me what he likes and doesn't like. He's my baby, not yours! The mama bear in me really comes out.

The next thing in the plan is to have a pulmonologist come and look at him, see if they can decipher anything.

Sarah made martin a sign to hang about his bed. "Things I Like"--it has a list of things nurses can do with Martin to help him respond, and challenge him a little bit. This way nurses aren't just shoving paci's in his mouth.

DAY 107--

Today was the care-conference. It was really nice, but as the same time, didn't cover anything I didn't already know. And they really didn't cover what the game plan was.

The pulminologist is coming in two days to check Martin out. They're going to do another ECHO, to make sure his heart isn't working to hard still. They were able to bump his O2 down to 3 1/2 L, which is better than 4L.

As for his growth, his weight is in the 10th-%-tile, his height is in the 3rd-%-tile, and his head is in the 50th-%-tile. Yup, definitely my child, with a head that size.

One of the goals we set was to make sure feeding is a happy experience. Don't force him to take something, if he takes 2mls, that's great!

It was nice to feel like there are a lot of people in our corner, rooting for Martin. We had a lot of support there, which was great. After the official meeting, the nurse, NNP, and Dr Chan left, and the rest of us discussed the future. It's a gtube, there's just no getting around it. Martin is going to have long term breathing and feeding problems. Dr Chan was so great to not mention it, knowing that the idea really bothers me, which I appreciated. But it's going to be the best thing for Martin, and that's really what it comes down to.

After the meeting, we went to a NICU baby shower, put on by the parent to parent group. It was so fun. A baby shower is just something a NICU mom doesn't have time for! It was great to get out and meet a few of the other moms I didn't know. and it's nice to realize that we haven't been here the longest (it just feels like it). I almost didn't RSVP to it, because I had hopes we would be discharged before it. No such luck.

DAY 108--
Martin is still holding steady at 3 1/2L O2. I think they're going to move slowly on the weaning process, which is good. They also started a sedative--anti-anxiety medication to help keep him calm. He just doesn't have the lung capacity to be able to cry very much. so when he gets worked up, he can't breathe, he desats, and they have to turn his O2 up.

The problem with this med, is it completely knocks him out cold. Nothing wakes him up.

For the Sunday night measurements, he weighed in at 7lbs 6oz, and was 19 1/2" tall. That's about how tall Katryn was when she was born.

DAY 109--

Still on 3 1/2L high flow. The ECHO looked good though, his heart isn't working too hard, which is great. The pulminologist came super early and said that it looks like he has severe chronic lung disease.


I wish something conclusive would happen. I think that's what bothers me the most, is there is really no concrete answer why he can't breathe good. Even the experts can't figure it out. I'm pretty much to the point where I don't care what it is, I just want an answer.

The Pulminologist is starting some new medications for Martin. Another inhaled steroid, and Singular. Hopefully these will help open his lungs up and heal them.

As for therapy, we're working with the paci and milk right now. Trying to reteach him to open wide again, and give good, deep sucks. The kind of sucks that will make breastfeeding possible.

DAY 110--

The Singular treatments were started. It's basically a powder they mix with some milk. it's really easy, something I can do at home, since he'll be coming home on it. He's on 3 1/2L still, right around 40% which is pretty normal for him.

This anti-anxiety med they're giving him is ridiculous. The poor boy can hardly open his eyes he's so out of it!! This is NOT a normal Martin. We're going to try to get the doctors to decrease it to every 12 hours, instead of every 6, so we can have some awake time.

Sarah and I created a "play plan" for Martin. Things to help his developmental skills through playing. We're working on tracking toys back and forth, and bringing his hands together with a toy in each one, to hit together.



please let me know an update. I have had your blog bookmarked for months now and just want to know how you are. We have been praying a ton! Thank you!

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