Day 100 in the NICU- December 7, 2012

I can't believe it has been 100 days since Avery was born. At times, it seems like it was just yesterday. Avery had her MRI today. She was sedated a little bit because she was too active. She did not get a chance to be bottle fed today because she was too sleepy from the sedation. The MRI was normal! We are so excited. We have been worried about her brain (cerebellum in particular) since I was 20 weeks pregnant and they told us it was measuring a few weeks behind the rest of her body. The neonatologist said everything looked normal in size and development. The pediatric neurologist that we saw back in August will review her MRI and give his input. Avery was very sleepy up until about a half hour before we left. Then she was WIDE awake. We took a lot of pictures so I am just going to post them. Avery is too tired to come up with captions tonight :-)

Day 99 in the NICU- December 6, 2012

I didn't do much relaxing on my day off. It was a busy day at the NICU. I worked with Victoria, OT (occupational therapy) trying to bottle feed Avery today. Avery was just not having it. Even Victoria couldn't get her to eat. Eating from a bottle is a lot of work for Avery. 50-60% of the formula that gets in her mouth ends up going into her cleft and she has to work hard to clear that out of there so she can breathe. This is why they only try bottle feeding her once or twice a shift. It is just exhausting for her. Aves was supposed to be going for a MRI today but the MRI machine was broken. I am not sure if she ended up going later in the day. They want her to get a MRI as a follow up to the one that I had when I was 20 weeks pregnant showing her cerebellum was measuring a few weeks behind the rest of her body. Then Mary, the Director of nursing, came in to talk to me about the letter I wrote to the Ombudsman. Then about an hour after that, the Ombudsman (patient advocate) came from main campus to speak with me. Avery was pretty fussy the whole day and we couldn't do much to settle her down. The good thing is that Avery is on no oxygen assistance! Even that she has been crying much of the day, her oxygen saturation levels remained really good. It did dip once in awhile, but she would always bring herself back up quickly.  She still had the cannula in today, just in case they needed to turn the oxygen back on.

 

Mommy and I had a hard time today trying to bottle feed today



 

I need to get the hang of this so I can come home soon

Day 98 in the NICU- December 5, 2012

We met with Victoria, the occupational therapist, today after work for about an hour and 15 minutes. She showed us how to give Avery a massage to help calm her down. She also showed us how to work with Avery on her neck stretches. Since birth, Avery has had to work hard to breathe and many times when she gets upset, she tenses up a great deal and squeezes her shoulders up. The stretches will help all the tension in her neck.

Victoria also taught us how to feed Avery with the special squeeze bottle. Tim tried it out today. I started working 10 hour shifts and will have an extra day off during the week so I plan on trying to feed her tomorrow. Victoria told us to allow Avery to suck twice on the bottle and on the third suck, to squeeze the bottle and the milk will come out. It is very difficult to feed her because not only do you have the typical problems of feeding a newborn but you also have the obstacle of her cleft palate which makes feeding even more difficult. You will notice in the pictures that Avery is kept very upright during feeding. It helps the milk go down her throat instead of up into her cleft.

Avery is on only .25 liters of oxygen. I have a feeling that they will discontinue it tomorrow which I am very excited about!

Pretty soon I am going to be bigger than Mommy!

 

Daddy is feeding me for the first time! He and I are both learning how to do this.

Nom Nom Nom (I don't want to talk with my mouth full)

Day 97 in the NICU- December 4, 2012

Avery had the swallow study today. The study showed that there aren't any airway restrictions and she swallows just fine. She does have reflux and it comes back up into her cleft and in her nasal cavity. Also sometimes when she eats, the formula goes right up the into the hole in the roof of her mouth. Feeding is Avery's biggest obstacle right now.  There are talks that she might have an MRI Thursday or Friday this week. Luckily, they can do that right there at Hillcrest and she doesn't have to be transported to main campus. They want to do an MRI to follow up from when it was found that she had cerebellar hypoplasia(small cerebellum) when I was pregnant at 20 weeks.

I am still attached to a lot of wires. One of these days Mommy and Daddy won't know what to do when they go to pick me up and I have no wires attached to me.

 

Mommy loves to take pictures while she is holding me.

 

It's beginning to look a lot like Christmas! Mommy and Daddy started decorating my room.

Day 96 in the NICU- December 3, 2012

We still haven't gotten the results of the sleep study back. I am really hoping we find out the results tomorrow. They are going to go ahead and do the swallow study tomorrow. This will show us what happens to the formula once she swallows it and will let us know if she has reflux. They decreased her oxygen to .5 liters and she is now on low flow. She is getting so much closer to having no breathing support. I am so excited. She did really well with her desats when I was visiting her. The only time she desatted was when she was gassy or trying to poop. The past week or two, Avery has been very uncomfortable and gassy. I asked the nurse today if they could ask the doctor about possibly changing her formula to see if that would help.

 

I'm posing so you can see my double and triple chin

 

 Mmmm this thumb is pretty tasty

 

Mommy wanted to show you all my cute little feet

Day 95 in the NICU- December 2, 2012

Not much to update today. Her oxygen was weaned down to 1 liter and she seems to be doing okay. She is now 17.5 inches long. We should find out about the sleep study results tomorrow. Her swallow study test is most likely going to be postponed because she hasn't been drinking 10-15ml of formula consistently.

I did not like Mommy putting a new outfit on me..but I do look really cute

 

 Mommy likes to give me smooches

I am wide awake!

Day 94 in the NICU- December 1, 2012

I went up to visit Avery this afternoon and got to hold her for over two hours. Her oxygen levels remained really good the whole time. I spoke with the nurse and she told me that other people have also complained about the nurse manager. She said a dad almost stopped coming to see his baby because of her. Tim ended up calling her Friday and telling her that he didn't like the way she handled things. She never apologized for saying we aren't there enough.  We will be writing a letter to the Ombudsman (patient advocate). I am not looking for anything to be done about it, I just want it documented in case any other parents have the same problem with in the future. Avery is now up to 5lbs 6oz!

Stick 'em up

 

 Sometimes when the nurse bottle feeds me, I am more interested in trying to eat the towel