October 7, 2008

Amaree's love affair with the Binky. This is the larger Binky. They move up in sizes so they can develop the correct muscles to learn to suck. It is so big!

A lot has happened. First, Amaree has lost some weight, quite a bit actually, around 100 grams (four ounces). This is due to several things. First, the steroids make her loose weight. Secondly, the caffeine makes her loose water weight, and thirdly, her isolette wasn't working quite right and she was cold and had to use some of her energy to keep warm. The good news is that she was able to maintain her temperature on her core or they would have found it sooner, and they fixed the incubator to keep her warm. The water weight is good to come off because a lot of it was in her lungs and making it more difficult to breathe.

She is breathing really well now and is maintaining oxygen of 25%. Humans breathe 21% so it is really close to room air. She also moved back down on her ventilator settings. Her lung x-ray showed that her lungs are really clear-the pneumonia is gone and she is getting stronger.

Her echo showed that the murmur is due to a valve narrowing, if I understood it correctly. They aren't going to do anything for it, and it isn't serious. It is very likely she will grow out of it eventually.

Just look at those fingers!

The last bit of news is that she continues to love her Binky. Several of the nurses have told me that when she is agitated they give it her and she calms down and just sucks on it. We really need to get her off the ventilator so she can really suck on it and learn to feed.

Annie said that Andrew had a small murmur when he was a baby too. She really is his child in so many ways!

Amaree has grown two whole inches! When we put her back in the Giraffe after changing it, she was stretching.

October 6, 2008

I finally got to REALLY hold my baby for a few minutes while they changed her isolette out. She is SO beautiful!

Andrew also got to hold her. She opened her eyes for him. I think she is so in love with him, and he is certainly in love with her!

This is her incision from her heart surgery. It looks really good in person, and really red on camera. You can see that it isn't that big and it looks really clean.

Amaree had a busy morning. She had a blood gas, a heart ultrasound, and an x-ray. The gas wasn't as great as they wanted, and they wanted one more rib showing on the x-ray so they moved up on one of her settings. That means that she had gone down four points, but is back up one. She still moved really well, and is down on one of her other settings. They are still talking about extubating soon. We really want this to happen!

The ultrasound was for a murmur that they were hearing in her heart. They don't think it is her PDA or anything like that. However, they check everything and so it is great that they are going to take a look at her heart and see what is causing it. They aren't too concerned, but it will still be nice to know what is going on in there.

October 5, 2008

Amaree is down another two whole points on her settings!  This has been really encouraging for us.  We almost feel this is too good to be true.  She is getting so big and strong.  They really hope to get her off the ventilator soon.  I found out something encouraging also.  I thought we were going to have to be on the C-PAP for a really long time.  However, they said that one to two weeks is a really long time for a baby to be on the C-PAP.  I had thought that Amaree would be on the C-PAP for weeks and weeks, but it sounds like they are really pretty good at getting off the C-PAP.  They say that it irritates them and they get off of it.  

Amaree is so strong, she can lift her head!  We have seen her do it a couple of times.  When she gets too much secretions in her tube she gets upset and we have seen her lift her head up off her bed and hold it up for a few seconds.  It is a good thing she is going to get off the vent soon because when she gets a little bit bigger and stronger she can extibate herself.

OH I learned something of mine that she has! ! !  Finally!  Okay, so Amaree has a Mitchell stomach.  She gets so ornery whenever her tummy gets empty.  She feels much better once she has eaten.  If she had an Andrew stomach, she could go for hours and hours without food and not even notice.

October 4, 2008

Amaree is having a good day, the steroids seem to be working well. Her oxygen has been really low all day, in the 20's and 30's, and so they have been able to wean quite a bit. She looks great, and has been really calm. She hasn't been as awake today, but she has been doing well, so we will take it. She has decreased on her ventilator settings two whole points (huge improvement).

She has made it over 3 pounds (she is a fatty!). They started Amaree on the steroids yesterday, and today we both swear she is bigger than she was last night.

Lex asked if she would be on the study still when she came off the ventilator, and she will be when she comes off the ventilator. The study was to see how well babies do on C-PAP vs NIPPV. They are essentially the same thing, but the NIPPV gives an extra puff of air with pressure, while the C-PAP just gives pressure.

Amaree has also been doing well with her feedings and they have increased to 25 ml. Yesterday and the day before she was having some tummy problems and we think it was the fortifier that was causing the problems. They switched formulas and she is doing so much better. Her little tummy is much less bloated.

We are very encouraged by her progress. We are just praying that there will not be any more bumps in this part of the road. We know that there will be more bumps, but if we can just get her off the ventilator, we will have conquered one more mountain!

October 3, 2008

Last night Amaree had a really big belly. They were concerned about some problems, but it appears to be gas and some intolerance to the fortification. We were glad that she didn't have problems because they have been waiting for us to change her bed and if she did have another infection then they didn't want to change the bed right away. Thank heavens it doesn't appear to be anything more than a little intolerance and gas. They are going to change the fortification to a different kind and see if she can tolerate it better. We are waiting for her to have a huge blowout. It is going to be messy.

Andrew and I both got to hold Amaree last night. This time for REAL! When they change the beds, they have to take them out of the incubator and then move it out, move the new one in, and then put her back. So we actually got to HOLD her while they did this. It was great. She is so tiny, but she was awake and looking at us. I will post pictures soon. It was amazing.

She has not moved on her ventilator, so they have decided to take a more aggressive approach to her treatment. Amaree is going to be getting some steroids to help her lungs develop. It is a very small amount, and it is only going to be for a few days. Andrew hates that ventilator and we are feeling like at least we are doing something. It is hard to just wait when the machine can cause permanent damage the longer she is on it.

October 2, 2008

I really like this picture, the only problem is that it looks like she has black eyes. They didn't look like that in person.

Amaree has gained another ounce! One more and she will have gained a whole pound, two more ounces and she will be three whole pounds!

She had another x-ray this morning, and it looks a little bit better than the last one, but they are still concerned about some lobes being collapsed. I didn't know that lobes could collapse, but I guess it is common in these little babies. She hasn't moved on her ventilator settings, but hopefully we can start moving them down soon.

They have waited to change her bed so that we could be there. Apparently it is a little bit of a process, but it means that we get to hold her! Hey, I will take what I can get when it comes to holding her.

I hear that Amaree looks like a normal size baby from the pictures. In this video, I try to take her Binky because I thought she had fallen asleep. You can see how small she is compared to my hand and how much she loves that Binky!

October 1, 2008

I love this picture of her sucking on her Binky and her hand over it, keeping it in. She loves that thing.

First, I would like to apologize for not getting this updated yesterday! Somehow the day just escaped us and we didn't get it updated.

Here is the latest on Amaree: She is doing really well. They have increased her feedings, to 27 Cal and 22 ml. This means that they are fortifying the milk and giving her some extra fat. The past two days she has spent one hour each day with the Binky! She really enjoys it and it is really good for her to be strengthening those muscles. This is really encouraging for us.

She still has a lot of secretions, but partially it is from the ventilator. Her settings are still the same, but they started her on Caffeine again so they are hoping to start weaning again. The nurse said she is doing really well on breathing on her own for a few minutes. They turn the ventilator off for a few minutes when they do cares to listen to her lungs and her stomach and see how she is doing, and she does really well when they stop the machine. She just needs to get a little stronger!

She weighs about the same, and that is why they have added some extra calories to the milk. They want her to get bigger.

Amaree also had another blood transfusion yesterday. They said she is doing much better now that she had it. She looks better and is feeling better. They have to give her blood quite frequently, I don't know how much she has had, but I know that she has quite a few. One of the reasons that they have to give her blood is that she doesn't make enough just yet to cover what they take. They are always taking a little here and a little there to test blood gases, hematocrits, etc. They don't take much, but she doesn't have much, so she always does better when she gets a little boost.

Amaree also had a routine eye exam today. We don't have the results of it just yet, but the results from her head ultrasound came back normal. The eye exam is just routine, to make sure that there are no problems, so I am not too concerned about it.

Also, I don't think I told about this, but one of the nurses told us that she had to change Amaree's IV. She started to do the prep work, and Amaree was awake. She said that Amaree knew what was happening, and gave the nurse a look that said, "Please don't do it!". The nurse said, "I'm sorry, but I have to, honey." Then Amaree puckered her lower lip and pouted! The nurse said that in all her years there she has never had a baby do that and it broke her heart to have to poke her to get that IV in.

So since we didn't get things posted yesterday, here is another fun video and a few pictures:

We don't get to see her with her eyes open very much, but she was really alert this day, so here she is!

We took her Binky out and she started to suck on her thumb. I know that this is pretty common, but it was the first time that we had seen it. We thought that it was pretty cool!

Here she is, resting peacefully.