Fat Baby – 12/22

On Tuesday we actually went in to see GI. Dr. Punati said that we can start weaning Averi off of the 24 hour feed. Every couple if days we will increase her feed rate so that we can lower the number of hours the pump is turned on. The goal for right now is to have two 4 hour periods a day where she isn’t getting anything pumped into her stomach so that she will learn to be hungry and hopefully be more interested in oral feeding. She also said that there is nothing wrong with skipping bottle feeding if Averi can’t figure out how to suck. When she starts taking more by mouth we will decrease the amount of milk we put in the pump.

I have to keep reminding myself that this is slow and long process because I want her to be eating and rid of this G-Tube…baby step, baby steps.

We also visited the neonatal clinic where I brought up my concern about Averi’s weight gain. She is a chunk. They said that since we are no longer increasing her feeds, she should maintain – whatever that means. It’s a good thing rolls look really cute on babies and she has really kissable cheeks!

Apparently they like kids to stay at the 50th percentile, even when her family is small and her height is in the 20th percentile. ‘Don’t worry, she’ll grow into her weight.’ Am I the only one that sees something wrong with this picture? Dan and I have decided to take this into our own hands and decreased her feed last week…mwahahaha!
I love this picture. It seems to scream, “Hey mom, get that big black thing out of my face!”

Hey Mickey You’re so Fine – 12/11

After waiting patiently for 3 days, GI finally called to follow up. It was a wonderful phone call.

First, she told me that Averi could be switched off of the Elecare and back onto breast milk. Secondly she said that her throat is healed so we could take the J-Tube out and replace the Mickey Button. Thirdly, the swallow study went well (duh, I was there) and we could start giving her 10 ml of water in a bottle every day until we met with an Occupational Therapist (OT) which she would make a referral for. I was so excited!

That night Dan decided to make a video of Averi having her first bottle. In case you are wondering, no, I will not be posting that video. She chewed on the nipple (thank goodness I didn’t try breastfeeding right away), gagged, spit, blew raspberries…oh, and swallowed 4 mls. Notice I didn’t list suck. It is definitely going to be a process.
A few days later, after playing phone tag with just about every department in the hospital, I found out that, if I was comfortable with it, I could just take out the J-Tube at home and put the Mickey Button back in. I decided to wait until Dan came home, just in case something went wrong, and he again took a video that I will not be posting. The tube had a ridge around the end of it, to prevent it from coming out accidentally, which made for some irritation, bleeding, and screaming when it was removed. Her stoma was sore for several days but it is finally starting to look better. Did I ever mention how much I LOVE the Mickey?

We then did some more waiting and went in on Monday the 21st for an OT evaluation. She said that right now we need to work on sucking a pacifier so that Averi can get used to having something in the back of her mouth (she has a crazy gag reflex) before she can try to suck-swallow. We can also dip her pacifier in milk or put rice cereal on chew toys so that she will taste it and be motivated to put things in her mouth. Once the evaluation is put into the system we will start going to OT once a week.

Video Swallow Study – 12/8

Averi has now had 3 video swallow studies done. Every time she has one it amazes me how much we can do with modern technology. Basically she is fed barium and a continuous x-ray is taken so that the barium can be followed as it passes through her system. It is so cool.

Since I haven’t ever posted about them before I thought I’d share all 3:

5/13
Averi was initially transferred to Children’s because of choking and coughing when she tried to eat. It was thought that she had a tracheoesophageal fistula (TEF) type H, which is basically a connection between the trachea and esophagus. This is bad because any time you swallow some of it would spill into the airway.

At the time she was only one and a half weeks old and only swallowed a few times but the TEF was ruled out. She looked so tiny and helpless strapped into that chair.


9/9
During Averi’s VSD repair, the ENT did a bronchoscopy and found her laryngeal cleft (a split between the larynx and esophagus). It is similar to the TEF but at the top of the esophagus instead of in the middle.

Another swallow study was done to see if she was aspirating (getting fluid in her lungs) while trying to eat. She was aspirating, even with all the different thicknesses, and we were told to stop all oral feeding.This time my mom got a short video. I always have to watch it a couple of times, but right at the end you can see the doctor point out where some of the liquid is going the wrong way (if you can see anything in this tiny little screen).

12/8
Now that the laryngeal cleft has been repaired and Averi’s throat has healed, another study was done to see if the aspirating had stopped and if she could handle trying to drink and eat. Is it just me or is that blue chair shrinking?

She was really uncoordinated and didn’t swallow consecutively but this is sort of what swallowing is supposed to look like. Try to tell me that isn’t amazing.

She also got to try solids for the first time. Granted, this isn’t how every mother envisions her child’s first bites, but the barium rice cereal made for some fun pictures anyways. She looked like she got into some white lipstick.

She didn’t aspirate and didn’t even need the milk to be thickened so we were told that the doctor would contact us about introducing oral feeds again. What, are we actually taking a step forward?

HMG: The Wedge – 12/8

Now that she is over 7 months old, Averi is learning to do some fun new things. We recently got the highchair out and she loves sitting up and playing with us in the kitchen and during meals.

She has also finally learned to ROLL OVER from her back to her stomach. It doesn’t happen all the time yet, but she is definitely getting there. She started by getting everything over except for her shoulder.

Then, the other day, I heard her crying and when I went to check on her I found her lying on her stomach upset that her arm was stuck underneath her. :)

It just recently hit me that Averi is going to be developmentally delayed. Obviously I already knew this, but seeing it happen is completely different. During our last Help Me Grow session we were told several things that Averi needs to be working on.

Her legs flop out because of low muscle tone so whenever she is sitting in a highchair or car seat we put blankets on either side of her legs to help turn them in and keep them together.

Averi arches back when put in a sitting position, again because of her low muscle tone (she tries to compensate for having no muscle to hold her up by locking every muscle in her body), so we are propping her up with pillows all the way around her and teaching her to lean forward by bribing her with toys.

We’re still working on imitating sounds with her because she hasn’t started making consonant sounds yet like dada or baba. She is becoming quite vocal, however, and will let you know when she wants some attention.

The thing that Susan was really worried about was Averi’s reaction to tummy time. When put on her stomach she would just leave her face down and suck on her hands, not trying to lift head much or use her arms at all. Her legs are pretty strong but she isn’t using her arms as much. The solution came a few days later after Susan talked to the PT and returned with a big wedge.

The wedge holds Averi at a 30 degree angle so that she doesn’t have to work so hard against gravity to push up onto her forearms.The difference was like night and day. I couldn’t believe it. Now she will sit up on her forearms and even smile for a good 10 minutes of tummy time.
As she gets stronger we can slowly raise the bottom end of the wedge until she is lying horizontally.