Day 93 in the NICU- November 30, 2012

Avery is 3 months old!

I can't believe we have a 3 month old! It is crazy!

Avery had a pretty good day today. They weaned her oxygen down to 1.5 liters and she was doing well. She had another eye exam this afternoon. Everything seems normal. We do not have the results of the sleep study yet. Tonight they tried to wean her oxygen down even further to 1 liter and Aves wasn't having it so they moved it back up to 1.5 liters. Her feeding tube kept coming out of her mouth so they ended up putting it in her nose to see how she does with it there.

Looking so cute is hard work

 

 I'm dreaming of the day I get to come home with Daddy and Mommy

Day 92 in the NICU- November 29, 2012

Avery is 13 weeks old today!

 

Well we had our meeting with the doctor, nurse practioner, occupational therapist, respiratory therapist and social worker today. They didn't tell us anything that was a big surprise, it just made us sad because they confirmed Avery is not coming home anytime soon. There is probably a 99% chance that she won't be home by Christmas. She is making progress and has come a long way from where she was, but she is taking her sweet old time. I think she takes after her Mommy sometimes. The occupational therapist seems to like how she is coming along on her feeding. We should have the results of the sleep study by tomorrow night.

They did mention that when she becomes more stable, she will most likely be moved to the Children's rehab facility in Shaker Hts which we aren't very excited about. It is more difficult to get there than Hillcrest. They want her to go there because she would be working more closely with Physical Therapy and Occupational Therapy. It is closer to a home atmosphere than at the NICU. They would be able to work with her on the ground on a mat and do stretches with her, etc.

After the meeting, we met with the Occupational Therapist and watched her feed Avery. She described how to use the bottle and told us how to watch Avery for cues. We will be meeting with her next Wednesday to learn more about the feedings and she is also going to show us how to give Avery a massage. She said Avery really enjoys it and it definitely calms her down when she is upset.

The nurse manager then came in. Tim and I were really turned off by her. The first words out of her mouth were that Tim and I don't spend enough time at the hospital. She wants us to be there and learn about her care, etc. First of all, I don't believe she has ever had a child in the NICU before so even though she works in the NICU, she really has no clue what we are going through. There are a couple nurses here that have also had preemie babies and they said it is much different being a nurse in the NICU than being a mom with a baby in the NICU. They said they were very stressed out when their babies were here even though they knew everything that was going on.

Also, Tim and I are working fulltime. I need to keep working to have insurance to pay her hospital bills. She doesn't realize that half of the parents in the NICU are not back at work. Also, most of the babies in the NICU have only been there a few weeks, not 3 months like we have. If we weren't working and our baby was just born, of course we would be there all day. They want us to be there in 4 hour increments not just an hour here and there. They also want us to sleep over and spend a whole 24 hour period in the NICU.

Mommy and Daddy are proud at how far I have come.

Day 91 in the NICU- November 28, 2012

Avery started her sleep study today and it will last for 24 hours. She has a new tube down her throat to her esophagus. It will measure the pH level to see if she has reflux. The nurses have to push a button to let the test know when Avery is feeding. She also has two electrodes on her chest and her pulse ox and heart rate will be monitored as well throughout the test. She is currently getting 42ml at each feeding. Today she took 11ml from the bottle for her first feeding (the rest she gets through her feeding tube) and 4ml the next feeding. She still weighs 5lbs 2oz.

Look at all these wires I am hooked up to!

 

I have a neat new computer in my room, too bad I have no idea what it does! Mommy told me that it is a live feed of my heart rate, pulse ox, etc. used for the sleep study.

 

That new tube in my nose is what is monitoring my pH level.

 

See all those cords and wires? You guessed it, they are all attached to me.

 

This is my version of a white rapper, yo.

 

Day 90 in the NICU- November 27, 2012

Avery didn't have her sleep study today. They were waiting on a piece of equipment. She drank 10ml from the bottle and occupational therapy said they think she would have done better if she wasn't so gassy and trying to poop when she was feeding. Avery is getting a new type of bottle delivered to her tomorrow. She is high maintenance already! lol. Guess what? Avery hit 5lbs last night. She is now 5lbs 2oz!

 

Carrying around all this extra weight is exhausting!

 

Just kidding, I can't even walk..but I am pretty good at opening my eyes now.

Day 89 in the NICU- November 26, 2012

Avery took 15 ml from a new type of bottle today. It has a regular nipple on it but is almost like a squeeze bottle. Physical Therapy/Occupational Therapy said that she seems to be doing really well with that type of bottle. She is now 4 lbs 14oz. She is going to be 5 lbs before we know it.

The doctor said he would like to do the sleep study tomorrow. The test will measure her breathing while sleeping and also monitor her brain activity. They are trying to figure out if the reason for her desats is due to her brain activity.
Here is a little more about the sleep study
Polysomnogram. This test records several body functions during sleep, including brain activity, eye movement, oxygen and carbon dioxide blood levels, heart rate and rhythm, breathing rate and rhythm, the flow of air through your mouth and nose, snoring, body muscle movements, and chest and belly movement.

The doctor would also like to perform a swallow test at the end of this week or beginning of next week. They will have Avery swallow a barium solution and they will be able to see what happens to the formula when she swallows, if she has reflux, aspirates, etc. You can learn more about the test by clicking this link:
http://new-vis.com/fym/papers/p-feed9.htm

Tim and I have a meeting with Dr Jeff(the neonatologist), the Social Worker, and Physical Therapist/Occupational Therapist on Thursday. They are going to meet with us to discuss where Avery is now in development, where they would like her to get to and how they are going to help her get there.

Mommy is excited that I am getting so chunky!

 

I'm showing off my guns in this picture

Day 88 in the NICU- November 25, 2012

Avery had another good day today. Her desats weren't that bad. She is now 4lbs 13 oz and she took 10 ml of formula today with a different type of nipple/bottle. The nurse said it was like a regular nipple but a lower flow. Both the day and night nurse say Avery loves to be held. Tim and I both got to hold her today and she was satting well (her pulse ox was in the 90's the whole time we held her).

Daddy and I snugglin'

 

Mommy loves the frilly sleeves on this outfit, plus she wanted to show everyone my chubby hand

 

 Mommy and I cuddling

 

 

 

Day 87 in the NICU- November 24, 2012

Avery had a good day today. She only took 5ml of formula through the bottle but she will catch on. She is now 4lbs 12oz. Her desats were pretty good today and they decreased her oxygen to 2 liters.

 

I am all snuggled up like a little burrito

 

Mommy's friend Karen came to visit me all the way from South Carolina

Day 86 in the NICU- November 23, 2012

Today was a good day. Avery took 10ml of formula this morning which is about 2 teaspoons. That is a little bit to you and I but that is a lot for her. I have a feeling she is going to catch on to bottle feeding in no time. She also had an eye exam today which went well. She is not a fan of getting an eye exam because they dilate her eyes and well, that's no fun for anyone. Her eye exam showed that her eyes are still premature but that is normal.

It was an exciting day for both Grandmas today. They both got to hold Avery for the first time. I will post a picture of Grandma S with Avery as soon as I get a copy. Grandma B visited when I was there during my lunch so I got a picture of it.

This is me with Grandma B. Grandma S also got to hold me today. I have a good feeling that both grandmas are going to be good at spoiling me when I come home.

 

I also got to be held by Mommy this afternoon. Daddy is coming to visit me after work and will hopefully hold me too. What a great day!  I love to be cuddled!

Day 85 in the NICU- November 22, 2012

Avery is 12 weeks old today!

Avery had a pretty good day today. She didn't have too many desats. It was Tim's birthday so she made a card for him :-) She is currently 4 lbs 10oz and they increased her feeds to 39ml every 3 hours. The neonatologist said he wants to have a family meeting this week to discuss her care. This made Tim and I a little nervous because we have no idea what they are going to tell us.

 

I am starting to be more alert when I have visitors.

 

 

This is the card that Mommy helped me make for Daddy's birthday

 

This is the card that Therese from March of Dimes made for my Mommy and Daddy.

Day 84 in the NICU- November 21, 2012

Avery had a good day today. She ended up taking 7ml of formula from a bottle which is the most she has taken so far. We got to meet the craniofacial doctor, Dr Doumit, today. He looked at Avery and said that her cleft palate doesn't seem too bad and that it should be able to be corrected with just one surgery. They will do the surgery when she is 12-18 months old. He said on a scale of 1-10 she is about a 2 so we are happy with that.

The bad news is that he doesn't think her cleft palate is what is causing her breathing issues. Dr Littner, the neonatalogist, said it could be caused by a few different things.
 1. prematurity. She might eventually grow out of it. He said some babies take up to 44 weeks to have their lungs fully develop.
2. an obstruction or problem with throat, trachea, windpipe, etc.
3. a brain issue

In order to rule out a brain issue, the first thing they are talking about doing is a sleep study. They can monitor her brain activity while she is sleeping.  They said they have done them in the past in the NICU but most of the time they are done at Main Campus downtown. We are hoping she doesn't have to go downtown for it.

Check out my new ankle bracelet.

 

I left this note for Mommy and Daddy. The nurses took so many pictures of me. I can't wait for Mommy and Daddy to see what I do when they aren't at the hospital.

Day 83 in the NICU- November 20, 2012

Avery was pretty fussy today. She seemed kind of gassy and acted like she had to poop but couldn't. Her pulse ox was pretty good the whole time I was there. The nurse said that occupational therapy worked with her today and she managed to eat 4ml from a bottle, which is great for her. She is now 4 lbs 8oz!

Even when I am sleeping, I hold my pacifier so don't try to steal it.

 

I am watching you!

Day 82 in the NICU- November 19, 2012

Avery's breathing was pretty good today. She hardly had any desats when I was there even though she was very fussy and crying because she had to poop. The lowest it went down to when I was there was 75 but it mostly stayed in the 95-100 range. The nurse said Occupational Therapy came in twice to try to bottle feed her today and she is still having the problem with swallowing the formula. She gets it in her mouth and doesn't know what to do with it. My friend (whose baby was in the NICU for 80 days last year) said that one day it will just "click" for her and she will understand how to bottle feed. I am waiting for that day :-) She is 4 lbs 5.9oz.

I love sucking on my pacifier and I make the cutest noise

 

The picture makes me look a little chubby but I am not this big in real life. The camera adds a few ounces.

 

Snugglin with Mommy

Avery's New Home

Here are some pictures of Avery's nursery.

It is all ready for her and we cannot wait until she comes home!

 

 

Day 81 in the NICU- November 18, 2012

Avery did much better today than she did the other day regarding her desats. She is still having them but not as low as they were on Friday. They don't really change much on the weekends. They were just going to let her chill out a little bit. We are now allowed to hold her whenever we want depending on when she is getting fed. If they are about to feed her, they want you to hold her during the whole feed or leave her in her crib during the whole feed. Other people are now allowed to hold her too which my sister was very excited about.

My shirt says "Everybody Loves Me" and I think that's true!

 

Aunt Janet got to hold me today. I could tell she was excited!

Day 80 in the NICU- November 17, 2012

Avery had a better day today than yesterday. She was still having desats but they weren't as bad as yesterday. She now weighs 4 lbs 6.7oz. I spoke with Dr Jeff, the neonatologist, and he said she still has a long way to go before coming home but to focus on how far she has come. He said Dr Doumit, the craniofacial specialist, is scheduled to come in and see Avery towards the beginning of next week. He will be the one to tell us exactly how extensive Avery's cleft palate is. He will also be the one performing surgery on her down the road.

Today is World Prematurity Day. More than 15 million babies are born prematurely each year and over 1 million of them do not make it. We feel very fortunate that Avery is doing so well.
http://www.marchofdimes.com/mission/prematurity_wpd.html

This is my impersonation of a burrito!

Day 79 in the NICU- November 16, 2012

Avery had a little bit of a rough but exciting day today. She is still having a problem with desats. When I was there, her pulse ox would go from 95 down to 60, up to 75, down to 40 and back up to the 90's. She has been having a lot of issues with it lately. On a good note, she drank 9ml of formula from a Haberman bottle today! I was so proud. They said while she was getting the rest of her formula through the feeding tube, that she sucked on the pacifier the whole time and that is a good sign. As of last night, she weighs 4 lbs 5.5oz.

I'm dreaming of a day without impressive desats.

 

This picture makes me look like I am ready to work out. It looks like I am wearing a t-shirt and wristband.

Day 78 in the NICU- November 15, 2012

Avery is 11 weeks old today. She is also the oldest baby in the NICU. The previous oldest baby went home yesterday. Avery was doing great today until she had a really bad desat and her pulse ox went down to 13. The nurse practitioner says Avery has some "impressive desats". Not something to really be proud of but she will eventually grow out of it. Not much has changed. She is still getting 35ml of formula and continues to get the Epo injections.

I'm dreaming of going home with Mommy and Daddy 

 

Grandma and Grandpa came to visit me tonight

 

Tastes like chicken!

Day 77 in the NICU- November 14, 2012

Avery had a pretty good day today. She did have a few desats when I was holding her. She also was pretty uncomfortable most of the night because I think she really had to poop but couldn't. They said she had been pretty gassy all day and her belly probably hurt. I spoke with the nurse and she said they didn't try to bottle feed her today. They just dipped her pacifier in the formula and let her suck on that. They said the last time they tried to bottle feed her, that she was good at trying to suck and she would get milk in her mouth but not swallow it so they are just going to move slowly with the bottle feeding. She is still 4lbs 4.5oz.

We had our family support meeting tonight and there was a couple there that had their baby at 23 weeks and so far, their baby is doing well and was born at 1 lb 6oz.  It makes me feel actually lucky that we had her at 25 weeks.

This is probably when I was desatting while hanging out with Mommy.

 

I like snuggling with Mommy.

 

I am so excited because I got cute frog jammies on!

Day 76 in the NICU- November 13, 2012

Avery had a good day today. She now weighs 4lbs 4.5oz. I spoke with the speech therapist and she said they are going to be starting to try to bottle feed Avery again. The nurse said Avery is going to be receiving EPO injections for 5 days in a row. She said it should help with the desatting, which will also help her with bottle feeding. Daddy held her for over and hour tonight.

 

Whaaaaat? Whaaaat? (that's my impression of the rapper Lil' Jon)

Do you think I look like Mommy or Daddy..or neither?

Day 75 in the NICU- November 12, 2012

Avery had another good day today. They said they are going to start trying to bottle feed her again. They think they are going to try a new type of bottle, one that you squeeze since Avery didn't like the Haberman style ones. They have been dipping her pacifier in formula and she really likes it and sucks away on it. They decreased the rate/flow on her cannula from 4 to 3. They measured her yesterday and she is now 17 inches long!

Mommy said the sunrise was really pretty this morning. I can't see it even though I have a window in my room.

 

I was sound asleep when Mommy came to see me this afternoon. She didn't want to disturb me by taking more pictures.

 

These are Mommy's hospital bands. She was going to wear them until I came home from the hospital. It's been almost 11 weeks and Mommy is worried they are pretty germy. She said she will still think about me all the time even if she isn't wearing them.