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.

Croup – 11/28

Averi has been sick with a runny nose and eyes for a week and a half now. She started getting better several days ago, but when she got worse again and started coughing, sweating, wheezing, and retracting her lungs just trying to breathe, I took her to the pediatrician yesterday morning. The doctor said Averi had an ear infection and bronchiolitis and gave her a breathing treatment. This didn’t help so she sent us to the emergency room.

They did a chest x-ray that showed no pneumonia, took some blood, checked her oxygen saturation, and decided she had croup. She was given a different breathing treatment and a steroid to help with the swelling in her throat and then observed for several hours. We were finally sent home with instructions to come back if her symptoms got worse.

She felt better last night and actually gave us a few smiles but woke up this morning feeling and sounding pretty bad again. She’s thrown-up twice today and keeps arching her back trying to breath. We’ll follow-up with the pediatrician tomorrow but there isn’t a treatment for croup so we just have to wait it out. Sometimes, if it’s not one thing, it’s 50.

Kaili was doing a great job taking care of her sick sister today. She wanted to hold her and give her toys to play with.

Feeding Pump

Last weekend we went to my parents’ house. The night we got there, Dan went to plug in Averi’s feeding pump only to realize that I forgot to pack the power cord. This is a problem, obviously, since it has to recharge every night in order to work and we couldn’t just use a different cord because it’s a 5 volt.

So we called Apria, the company that supplies it, at 11:00 at night and explained the situation. After getting several calls from different people, the branch manager called at about 2:00 in the morning to ask me why we hadn’t called sooner and to tell us that the driver couldn’t come to our house, even though he lives in the same area as us, and we would have to drive an hour to meet her at the office.

Knowing we’d fall asleep at the wheel, we told her that Averi would have to go all night without food and we would come meet her in the morning. The next morning, she called when Dan was 5 minutes late and told us she was just going to leave the cord on the door. I know the problem was my fault but it’s her job to deal with it, without being so rude.

Later in the week, on Thanksgiving, we were over at our friends’ house when her pump stopped working. I called again and we realized that the pump was stripping the tubing so that it couldn’t push the milk through. I felt bad making someone come out on Thanksgiving so we waited until we got home, put a new bag in the pump, and someone brought us a new pump the next day. Unfortunately, the new pump doesn’t have a timer on it like the old one did, so we keep having to prime air out of the tubing. Hey, at least it’s working and they brought it to our house. :)

Elecare

Two weeks after Averi’s surgery and endoscopy, I get a call from the GI doctor. She starts asking me a bunch of questions about how Averi is doing, if she is still on breast milk, what foods I’m still eliminating from my diet, if there is still blood in her poop, blah, blah, blah. She then tells me she got the biopsy results back and Averi has significant inflammation and irritation in her small intestines. Translated, that means some food is still bothering her.

She kept using the significant word and then told me that she wanted to try taking Averi off of breast milk again and putting her on a prescription formula with absolutely no allergens for three weeks. In the mean time I am to continue not eating dairy and soy and just freeze all my milk. I was devastated! The doctor then told me that she would put us in contact with the social worker because the formula is really expensive and insurance won’t cover it at all, and you know when a doctor says it’s expensive, it’s expensive.

Elecare then walked into our lives at $50 out-of-pocket for a can that will last 3 days.

So, Tiffany, if pumping is so hard and time consuming, you can’t eat the foods you like, and you’re currently doing it just to give the milk away because your daughter can’t eat it right now, why are you still doing it? Many people have asked me and even more have not, so I want to explain myself although I do not expect many to understand.

I do not continue to pump because my mom is a lactation consultant and I want to impress her or anyone else. I do it because it is one of the few things that I can give to my daughter. I can’t give her the comfort of eating while cuddled in someone’s arms, or even the comfort of eating at all. I can’t give her the ability to breathe better or make her reflux go away. I can’t ease her pain, or erase the scar on her chest, or stop milk from going into her lungs, or take the irritating tube out of her stomach. I can’t make her right ear hear or make her reach her milestones at the same time other kids her age do.

But I CAN provide her with the sacrifice of my time, energy, and talents. I can also give her milk with antibodies and nutrients to help aid her little body that has already endured so much. It may seem silly but it is a special gift that only I can give her, and I do it because I love her.

Surgery Follow-ups – 11/19, 11/24

We recently went back to Cardiology to make sure Averi was healing alright from her VSD repair. Her scar looks great and everything sounded normal with no murmur. They ran an EKG that was normal as well.

The doctor then explained to me that sometimes with the kind of surgery they did the heart can get a weak spot or another little whole. He said he didn’t hear anything but that he wants Averi to come back in 6 months for a sedated echo to make sure that everything is working exactly how it is supposed to (the sedation is just so that she will hold still so they can get a really good picture).

A few days later we went to ENT to follow-up on her laryngeal cleft repair. He said she looked fine and that her throat should be pretty much healed up by now. He will get back to us after her swallow study to let us know if she can start trying to eat again.