October 13, 2008

Amaree is having a calm day. She hasn't even had any sedation for two days. That is great because she is maintaining without anything. Her oxygen is around 30%, which is wonderful. She was also moved into a room with two roommates because she is doing so well. We are still waiting for the results of the scope, but it will probably be later this evening.

The nurse told me that she was on her tummy and sleeping, and when she checked on her, she had scooted her way up against the glass and was pressing against it. She was still asleep, but I guess she has just squirmed her way up to the door, just like she wanted out. She said she has never had a baby do that before.

I have also been told by several people that she doesn't look like a preemie. She looks just like a normal baby, except that she is tiny. The nurse even told me that.

October 12, 2008

In my excitement yesterday, I forgot to mention that Amaree has to do two things before we can breastfeed. First, she has to have her vocal cords checked. If they are damaged from the ligation, or PDA surgery, then breastfeeding is going to be more difficult. She is having the scope done tomorrow morning and we will know if it is damaged. 15-20% of babies who have had the PDA surgery have one of their vocal cords damaged. We are praying that she isn't one of them. We don't think that she has damage because she has a really strong cry, but we will know more tomorrow.

Secondly, tomorrow is the last day of the steroids. She has to stay on her nasal cannula and not back track and have to go back on C-PAP. She is on .01 of the steroids, and she was below 30% on her oxygen all day today. If these two things are good, then we are on for the breast feeding. We will know more a little later this week.

Andrew did skin-to-skin last night with Amaree. She LOVED it. She cuddled up with him and slept peacefully. Right before that she had an A & B. It stands for Apnea and Bradycardia. It means that she stopped breathing and her heart rate slowed. It was really scary. We think she did it because she was angry. She did it during cares and the nurse had to get her to breathe again. It was a level/grade 2 out of 5. It could have been a lot worse, but she scared us pretty good.

Today, we did skin-to-skin again. She latched for a few minutes but then she started to fall asleep so I didn't try much more. I just held her, but then she started to get fussy and she grabbed my finger and started to suck on it! I just gave her the pacifier and she sucked on it for ever. Then right before we left, the nurse did her cares at 2:00, and she was still sucking on it at 3:30 when we left. It so was much harder to leave her this time after actually having held her and cuddling with her.

I keep praying that she did not have any damage from the surgery and that all goes well this week.

October 11, 2008

**WARNING!!! THIS POST MAY CONTAIN OFFENSIVE BREAST FEEDING LANGUAGE**

This morning we arrived at the hospital quite early hoping to make it in time for rounds. When we arrived, we learned that they had already done the rounds and they decided to take her off C-PAP!!! She was on her nasal cannula. WE GOT TO SEE HER WHOLE FACE!!! ALL AT ONCE!!! We couldn't believe it. Since she was only on the regular cannula and not the high flow, our nurse (Jami- one of our primaries) said that we could do skin-to-skin. This is also known as kanga care or kangaroo care. Basically, you take off all your clothes from the waist up and then the baby gets set on your chest wearing nothing but a diaper.

I had to pump, so we did that first. Then I got to do skin-to-skin with her. Since I had pumped, we thought we would try non-nutritive sucking. It teaches the baby to suck without drowning/choking them. This is generally difficult for some babies to learn, and since they have had a lot of negative oral stimulation they don't like it. We were optimistic because of her current love affair with the binky. When we tried it, she latched without a problem. She sucked for a quite a while before she fell asleep. She actually sucked 1 ml of milk. Then I got to cuddle with her for an hour while she slept. She had a great time and her numbers were great the whole time.

Amaree did so well that we talked about the breast feeding protocol. Right now there are several things that she has to do before she can come home. She is able to do almost all of them. The two things that she still needs to do is breathe and eat on her own. Since she did so well with the non-nutritive, we will probably begin teaching her how to eat next weekend. Once she learns how to eat she gets to come home!!! (Assuming that there are no other major problems) We are seeing the light at the end of the tunnel more clearly now.

I forgot to mention that Amaree has a great little cry. She is learning that when she cries she gets attention.

October 10, 2008

Amaree is doing great on the C-PAP. She is currently at a five, so we are praying that tomorrow she will come off and be on a high flow nasal cannula. Her oxygen has been really low mostly the whole time, around the 23-26% range.

C-PAP is interesting because it is a little cap, with two hoses that come down and a bar that goes across her face and two prongs that go up her nose. Then she has a little nose cover that holds the prongs in place. It doesn't allow the oxygen to escape, but it gives her a little piggy nose. :( She also has to have a chin strap to hold the mouth in a more closed position so the air doesn't escape as much. The pressure makes her eyes a little swollen as well. We really don't get to see her eyes much because of the cap though.

She has been getting very agitated at cares. The C-PAP is quite annoying and she isn't enjoying it, but she is doing great. Andrew was a master tonight at keeping her calm. He took her temp, changed her diaper, changed her sheets, weighed her and kept her from de-sating (needing more O2). She loves daddy! Anything Daddy, she is all about it.

I did notice that she is getting eyelashes! She hasn't had any and they have just started to grow. They are really short and light, but they really make her eyes look much better.

Lex, I thought you would like to know that she is off the study because she is more than 30 days old. If she hadn't had pneumonia she probably still would have been on it, but that was a setback. As for the light at the end of the tunnel, we are trying not to get our hopes up too much. However, we see a faint glowing.

P.S. She is now 1430 grams! ! ! (3 lbs, 2 oz)

October 9, 2008

Taken September 4, 2008

Taken September 6, 2008.

Taken October 5, 2008.

Amaree is doing great again today. Her blood gas was perfect so they moved her down to a 6 on the C-PAP. I don't know how long they are going to leave her there because they don't want to wean too quickly, but she is doing great and her oxygen is around 25%. The nurse said she cried for her! She hasn't been able to cry since she was born. She said it was a nice cry, and she was crying because she needed her diaper changed. Go figure. We are super excited to see her!

October 8, 2008-Part 2

I called to check on her and see how she was handling her C-PAP. She is doing SO well. Even when she gets angry, (the babies don't like the C-PAP-it is irritating to them) she is only at 30% oxygen. Also, she is at a 7 and she is doing so well with it that they are waiting for a blood gas and if it is good then they are going to go down to a 6. They get taken off the C-PAP around a 5, sometimes a 4. If she keeps doing this well we will get to hold her this weekend! I am so excited!!! The nurse (Christine-one of our primaries) said that she is even sleeping and she is taking the Binky and it is calming her still. This is so much better than last time. She didn't sleep or rest at all last time. I really pray that we can charge ahead and not have any more bumps. However, I am going to try not to let my hopes get too high. It is so exciting though!!!

October 8, 2008

Amaree with her hands clapsed while she sucks on her Binky.

A close up of her little face.

Amaree is being extubated today! I am so excited! I am also a little leery because she failed last time. However, that was a month ago, and she had the PDA, her lungs weren't as big, she didn't have the steroids, she was smaller and just weaker. I really hope that this is the real deal and she is able to kick it. C-PAP here we come!

She has been doing great since they fixed the incubator. She started gaining some of the weight back and she has been moved up to 30 Cal on her feedings.

Kellie asked how big she is now. She was born at 1 lbs 15 oz and was 14 inches long. She is currently at 1320 grams or 2 lbs 14 oz. She is also 40 cm or 16 inches. JoEllen also asked when her due date was, and I forgot to answer, but it was December 1. Amaree is gestationaly 32 weeks. Her corrected gestational age is -2 months. The corrected gestational age is used to determine when she should be meeting milestones, when she is 6 months old, she will be 3 months CGA, and that is what they will use to determine her developmental progress.

In honor of today's events, I am uploading a video of me holding Amaree when they changed her bed. I know it is kinda noisy, but the ventilator is noisy. If you watch, you can see Amaree sneeze. You can also see them move the Giraffe around.