Birthday Cake

Averi is finally starting to feel a little bit better so I decided to make her birthday cake today. I am glad to say that she delivered.

For Kaili’s first birthday I made a baby cake and put a hemangioma on it’s forehead so it would look like her. We thought it was only appropriate to make an Averi baby cake, complete with heart scar and Mickey Button.

Kaili was way more excited than Averi.

The first grab.

We took a ton of pictures, along with a really long video that I will not bore you with, so I tried to just pick out the best ones. At one point she surprised us and went face first into the cake.




When she was done with the cake she moved on to her foot.

That's right, I did that.

I was really worried she wouldn’t know what to do with it, but she managed to make a very good mess (with the help of her big sister). I even found out later that Kaili pulled out the Mickey and sucked it off. It had been washed but it had also spent the last few months in Averi’s stomach. Mmmmm!
Happy Birthday again Averi.

Speech Evaluation

Now that Averi is a year old and just barely starting to babble, we were referred for a speech evaluation. Of course we had to go to the other side of Columbus for it, but the lady was really nice and Averi enjoyed playing with her bubbles.

The evaluation took about 1.5 hours and she concluded that Averi is at the level of about a 6-9 month old, which isn’t as bad as I thought. She said that Averi will definitely need speech therapy but it probably won’t be much good right now since she isn’t talking yet. The waiting list is long so she went ahead and added Averi’s name to it.

She called me back later today and said that she had heard about a new monthly group program that encompasses OT, PT, and Speech Therapy. I told her we would give it a try. For now she just wants us to keep working on imitating sounds and trying to get Averi to repeat them back to us.


On a funnier note, I noticed tonight that Averi’s steroid had run out in half the time it was supposed to. I immediately assumed the pharmacy hadn’t given me enough. Dan then pointed out that I had been giving her 1 tsp twice a day instead of ½ tsp. Opps!

I called the pediatricians office and the doctor said that Averi was going to be alright, that she didn’t need to go to the ER, and that I would have to get another prescription to wean her off the medication. Nice, my daughter is addicted to steroids because of me and I now have to wean her off of them slowly so she doesn’t go into withdrawals.

What Doesn't She Have?

Averi was already sounding croupy when we went to the Neonatal Clinic on Friday, so we decided to forgo letting her eat her birthday cake until she is feeling better. She actually did alright for her birthday, but by last night she was feeling awful.

Sometime during the night she decided that sleeping in the swing wasn’t helping her breathe, she managed to obtain a pretty decent fever, and she even threw-up all down my back. (I tried to decrease the mess by leaning over the crib and instead dripped all over everything – not the best idea.)

By this morning I was glad I had called OT last night to cancel and instead packed up and headed to the pediatrician’s office. I was a little hesitant because the last time she had croup the doctor simply told us to keep an eye on her and sent her home. By the time this visit was complete, I was glad we went.

Apparently Averi has croup, an ear infection (which took about 20 minutes to see because her ear canals are so small and the pediatrician had to keep cleaning them out while I held her down), an upper respiratory infection, the beginnings of pneumonia, and possible asthma.

He gave her a breathing treatment, which helped to calm her breathing, and sent us home with three medications and a breathing treatment inhaler. This is now what her morning and bedtime cocktails look like.

So that we wouldn’t have to pay for a whole aerosol machine, the pediatrician gave us an inhaler and a breathing chamber (not covered by insurance). Let’s just say that Averi doesn’t love having this thing held over her face for extended periods of time.

Hopefully this isn’t foreshadowing of what her second year has in store and she will start feeling better soon.

Happy Birthday!

It’s hard to believe that a whole year has passed since our beautiful little baby girl was born and life forever changed as we knew it. A lot happened during Averi’s first year of life, a lot more than anyone should have to undergo in an entire lifetime, but she has endured it well.

At some points, time seemed to be standing still, but in whole, the last year has been a blur. It seems like forever ago that we were spending every waking hour inside the dark walls of the NICU.

It’s so strange to think that Averi is a whole year old, but I’ve decided that part of my denial is due to the fact that she doesn’t act like a one year old. Averi, we are so proud of you and so grateful that you decided to join our family.

We celebrated Averi’s birthday by going out to get frozen custard, which was obviously more for me than it was for her.
The beautiful birthday girl. I LOVE those eyes. They show her every emotion.

Nutrition gave us the go-ahead to start slowly adding dairy into her diet, so we started her off with a few bites of yogurt and a small taste of custard. I’m not sure how she felt about it.

After dessert, we went to a Greek restaurant (more dairy and soy!). Everyone sang to her and they even gave her a piece of cake. We let her tear into it, even though she couldn’t eat any of it.

As it turned out, she was more interested in eating the napkin anyways.

Kaili was a great big sister and helped her eat her cake (the rest of us did too).

Since it was her birthday, we thought it was only appropriate that we attend the 5K Buddy Up Walk for Down Syndrome. The weather was beautiful! My dad even came up for the weekend to spoil us and help us keep a decent pace during the walk.

Kaili couldn’t wait to get her face painted and we couldn’t leave Averi out. Note the shirts that Dan’s parents sent the girls for Averi’s birthday – “My Sister is my BFF.”


At the end of the day, we went home and let Averi ‘open’ her presents. It was a perfect day. Happy Birthday Averi! We love you.

Croup Again?

Averi weighed in at a whopping 15 lbs 10 ozs today when we went to see the nutritionist. For once they were happy with her growth, although they did try to convince me she is shrinking again. Of course that didn’t stop her from upping the feed just a little bit more.

Averi is starting to move around a little bit more, which is great, but it scares me that I often find her wrapped up in her feeding tube when she wakes up in the morning. I voiced my concern to the nutritionist and she said that we can start weaning her off the continuous feed at night. It will take a while though, since half of her intake is during the night.

We changed her three feeds a day to four and slowed the rate at night. This is also going to stretch her stomach out more during the day, so hopefully she will start being more and more hungry.

I also talked to her about introducing milk into Averi’s diet. I am going to start giving her a little yogurt each day and then work up to giving her whole milk for 25% of her feeds and keep adding from there. If she doesn’t tolerate it, they will refer us to the Allergy Department to have her blood tested.

While we were there at the Neonatal Clinic, I asked for the NP to come listen to Averi’s lungs. She was up all night barking out coughs and at one point couldn’t cry because she couldn’t get enough air into her lungs to push back out. Guess what? She has croup…again!

Apparently her tracheomalacia makes her very susceptible to croup and that probably won’t go away until she is about 2. So it will be runny noses, not eating, humidifiers, steamy showers, and sleeping upright for her birthday.

I also talked to her about Averi sounding wet and needing another Video Swallow Study. When she heard that we are still using honey thickness for her milk, she left and ordered the study while I was there. She also said that she will probably refer us to ENT, depending on how the study goes. Hopefully they will call to schedule that soon.

PT: Week 5, Almost Sitting

We spent a lot of time working on sitting today, but I don’t know that Averi is going to be sitting unassisted by Saturday. Abbi said that she is doing really well, if she’d just stop crying and arching her back so much. It was funny because there was another baby on the next mat over from us and he didn’t cry once during the whole hour. I think he was just rolling his eyes and thinking about how dramatic girls are.

The few times I was able to distract her with a toy and get her to lean forward she did awesome. Once, Abbi was even able to pull her foot away from Averi’s butt without her falling backwards. Her core muscles are strengthening and she is getting much better at catching herself.

Tummy time is still not really happening at all. The interesting thing is that Averi is able to roll over on to her tummy but just chooses not to. If she does, she immediately rolls back over to her back. I always assumed this was because the Mickey button irritated her.

Abbi explained that it is actually from her heart surgery. She has had kiddos with Mickey buttons army crawl across the floor to the point of almost ripping their button out and not be phased by it. Something about having your chest cracked open and sewn back together and not being able to lie on your stomach for an extended period of time causes an aversion to tummy time. Whatever the reason, Averi’s arms are very weak from lack of use.

If you try to keep her on her stomach she will do a nice downward dog yoga pose. Abbi took that as a clue and tried holding Averi’s arms out while she pushed with her legs. Apparently there is nothing wrong with skipping tummy time and going straight to crawling (skipping crawling to walk, however, is a problem). Maybe she will be a little bit happier on her hands and knees.

OT: Week 14, No More Breastfeeding

After doing better than expected, although not fantastic, with the regular breastmilk last week, I decided to try breastfeeding Averi one more time before I am done pumping. I tried all the tricks and she would either cry or chew on the nipple shield. I took that as a sign that, surprise, breastfeeding is not ever going to happen. I didn’t think it would but at least now I won’t sit around and wonder if I stopped pumping at just the wrong time.

When I told Frances about it, she laughed and said I should have tried coating it in prunes since that seems to be the magic flavor that makes Averi drink milk and eat veggies. I told her that Dan might be a little confused to come home and find my chest covered in prunes. =P

Averi has been doing better with the bottle this week. She hasn’t repeated her three feeds in one day act, but she usually takes at least one whole feed a day and the other feed amounts have increased.

I have found several things that seem to help:
•Flavoring her milk with prunes
•Taking a break every 15-20 mls to pound on her back and break-up the congestion
•Burping – This is a new thing. She has never really burped before since we can just vent her G-Tube. Frances says this probably means she’s getting stronger because it takes some muscle to move the air up and out. Either way, Averi seems to feel better after the fact.

Today, Frances gave Averi the usual bottle of thickened milk and prunes. We tried decreasing the amount of prunes from 2 spoonfuls to 1 spoonful for every ounce and hit a wall. I’m waiting for the day that Averi either realizes that not everything tastes like prunes or she decides she is done with them. It will not be a good day at the Fisher household. For now, however, prunes it is! (Good thing she doesn't have diarrhea problems.)