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.

Sunday, August 15, 2010

Day 111-115 (June 30-July 4)

DAY 111---
Martin is still really, really sleepy. Not as bad, since they adjusted the medication, but look at those eyes! He's so tired. We worked on getting him 'readjusted' with the breast shield. It didn't work every well. He just can't breathe very well. Hopefully these meds will help getting his breathing under control, and we can finally focus on breathing. I want to be one of those moms that just has a 'feeder-grower' baby in the NICU.

They increased his feeding a little bit, to 51mls. And they're talking about increasing one of his neubulizer treatments to a couple times a day. This treatment dilates his lung tissue, so it can help him breathe. Hopefully if he gets that treatment before he eats every day, it can help him nurse better.

And Sarah brought me some vanilla extract that she MADE herself. I'm so excited to try it out!!

DAY 112--
Martin's feeds were increased again today--he's now at 52mls. They move slow with his feeds, because they want to keep him fluid-restricted. He's also just 2 grams shy of 7lbs 14oz! That's awesome! Almost 8lbs, I can't believe that a few months ago, I had a little 2lber. He's also now the 2nd oldest baby in the unit. Not really a goal we're striving to hit. . .

his oxygen is sitting steady at 3 1/2L at about 40%. Hopefully soon we can start getting him weaned back down. I've been working with the paci and milk with him. Sometimes he's good with it, other times (like today) he spits up. We also have to swab his mouth after his neublizer treatments and that causes him to gag and puke. The poor kid.

DAY 113--

They started his albeteral neublizer treatments every 6 hours now. That's the one that opens his lungs up. His oxygen was down to 3L today, so I think these medications are working!

Sarah came and worked with us again. She taught me some exercises that can help open up Martin's lungs. Things like trunk rotation, stretching his arms and shoulders down, and kind of pulling/stretching his rib cage down. Things just seem to be pushed up higher than they should be, so we're going to work on that.

And I love this outfit on him. It's probably the only time he'll get to wear it, since it's a preemie outfit, and those don't really fit him any more. If you could see the back of it, it has a large 'X' on a back-pocket. I love it!

We played with the rings and some other toys. He's starting to get the tracking down pretty good, which is awesome. We're also going to work on some positive oral stimulation, with the rings, and kisses, and other things that aren't invading his mouth.

DAY 114--

We had some awake time today!! it was awesome, Martin was up and happy for about 2 hours, and then he CRASHED. I can't blame him, it's a lot of work when you can't breathe. We played together for a little while, working on bringing his hands to his mouth. I thought, if he can feel his mouth on his hand, and his hand in his mouth, he might correlate that this is ok, and not freak out when things are near his mouth.

We tried breast-feeding a little bit, and he took a few mls, but not very much. But he did SOMETHING which is better than nothing. He seems more comfortable lately, and not breathing so hard. Something is working, I just wish I knew which one is was.

They stopped his mylicon for his gas. Hopefully he handles that ok, and we don't have problems. He also now weighs 8lbs and 1/3oz. We broke 8lbs!! woohoo!

DAY 115--
Happy 4th of July! Martin is celebrating in style, with a flag shirt. There was a lot of 'talk' about the future plans today. They talked about a gtube, which I still don't want, but honestly, Martin's feeding problems are going to be long term. As long as he can't breathe very well, he can't eat orally very well. A surgeon from Primary's is going to come talk to me, and discuss it all with me before we make a final decision.

They also talked about decreasing his calories. He's been gaining a lot of weight lately, more than they would like. That would be awesome! He's on 30cal right now, so they might drop him to 27cal.

We also noticed that Martin has a higher residual (leftovers) in his tummy after he gets his Singular med. I wonder if it's just harder for him to digest. Very interesting. . .