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.)

And the Award goes to…

Unbeknownst to her parents, Averi recently competed for the “get the most baths” and the “get the most baths at odd times” awards…and WON!

It all started Saturday night when we gave her the usual bath to prepare for church. Sunday mornings are rushed at our house because we have to leave by 8:30. Dan went in to get Averi ready and found her lying in a puddle of her entire night’s feed. She had once again managed to open her medicine port and soak everything…including her stomach. (On a happy note, she spent the morning crying which means that she is starting to know what hunger is!) Dan had to give her another quick bath, seeing as she smelled like vomit.

Then came Monday night. While feeding her dinner, Averi passed some gas that felt like it blew through her diaper right into my lap. Thirty minutes later when she was done eating, Dan went to change her and found out the gas was really a poop explosion. He quickly lifted Averi up off the ground while I ran around getting bags, wipes, mats, bleach wipes…and ran a bath. We literally had to rinse her in the bath, drain it, and then give her another bath with soap.

Tuesday morning, while I was home alone with the girls, Averi decided to have another poop explosion. This one was even messier because I was cleaning it alone. It got on the carpet, on her hands, almost in her mouth, and finally I just put her in the tub with her clothes on while I ran the water. Again I had to rinse, drain, and then wash in a fresh tub.

Tuesday night I went to check on Averi before getting ready for bed at about 11:00. Apparently I had forgotten to tape her medicine port shut, which we started doing at night after Sunday’s experience, and she was once again soaked with milk and bile. The poor thing was not excited about being woken up to take another bath.

In the end, Averi had 5 baths in 4 days and I was forced to do stinky laundry every one of those days. Next time, I would at least like a warning before she tries for these awards again!

PT: Week 4, I'd Rather Cry

Sometimes I wonder, as I’m sure every parent who takes their child to PT does, if Averi is really getting anything out of it. She literally cries the entire time we are there. The only time she stopped today was when Kaili sang her a song and when Abbi sat on the swing with her. I told Abbi she must have great self-esteem to be a Physical Therapist.
(Playing is too much work…I’ll just sleep instead.)

We did a lot of the same things today. Averi is slowly progressing on sitting and sat unassisted, other than having a blanket tucked under her butt to lean her slightly forward, for what I’m sure was almost a minute. She would do even better if she’d stop crying every once in a while.

She has gotten really good at rolling front to back and does it, along with screaming, as soon as Abbi puts her on her stomach. Although it is a slow process, Averi is getting stronger.

I always think she is going to fall asleep as soon as we leave PT but instead she plays happily in her carseat, simply relieved that she’s not being forced to do anything she doesn’t want to.

OT: Week 13, Three Whole Feeds in a Row

Before I tell you about Averi’s miracle day this last week, I want to warn you that I am way behind on blogging since going on vacation for Easter. I felt way overwhelmed by trying to start where I left off and catch up to the present so I am going to go backwards. Just follow the links on the right for “Latest Posts” if you are concerned about staying up to date on all of Averi’s going-ons. =P (Note the Mohawk below.)

This last week was no better or worse than the last…until Friday. Averi drank her breakfast bottle pretty well, and since she took so much from Frances last Monday I decided to try giving her another small bottle. Long story short, she took several bottles until she had taken her entire 120 ml feed, plus another 40 mls of prunes mixed with it, for a total of 160 mls…from a bottle! That is double the amount she has ever taken from a bottle before, and then she still ate another 2 bowls of oatmeal!

I was very excited but had low expectations for lunch since I figured she would be tired. She surprised me and drank the 160 mls of milk and prunes again! By dinner I thought I was dreaming because she once again drank the whole feed! She had done the impossible three times in a row and I didn’t have to hook up her pump all day! (Note the exclamation points!)

The sad end to this story is that we used the last of our thickener and had to give her no bottles for the next 2 days. I was excited to go to OT this morning so we could get more thickener and Frances forgot to bring it. Luckily, Dan left early from work so he could stop at the hospital and get some more thickener.

Since we didn’t have any thickened milk, Frances found a slow flow nipple and tried feeding Averi regular breastmilk flavored with prunes…sitting up, with a half-full nipple to make it as easy as possible. Although it took longer, Averi did better than expected and didn’t even gag.

While she was feeding Averi, I talked to Frances about several of my recent concerns. Ever since getting croup Averi sounds wet when she breathes and it always gets worse when I feed her. I want another swallow study done to make sure she is not aspirating now that she takes consecutive swallows.

Frances agreed but explained that most doctors don’t like swallow studies since not enough tests have been done on healthy babies to know how much aspiration is normal during eating. She decided that making a referral to GI would be the most optimistic.

I was excited until she pointed out that if Averi is still aspirating she will have to stop eating orally. That would be a nightmare! The positive side is that if Averi aspirates with thinner liquids and not with the honey thickness that we are currently using, the doctors will be on board and we will be able to get more than the few samples Frances gives us.

This is important because most doctors also do not believe in using thickeners. I’d like to see one of those doctors watch Averi try to eat with and without it and tell me there is no difference. Besides, I’d rather Averi be able to take all her nutrients orally, thus getting rid of the G-Tube, than be able to swallow small amounts of thinner liquids. We can always work on thinning her feeds later. (Hello, she just took a whole day’s worth of feeds using the thickened milk.) Frances agreed with me but I don’t know how much weight that carries.

We were sent home with the slow flow nipple and told to try it out…I think I’ll be sticking with the thickener.

Go, Go Gadget Arms

As Averi’s muscles and core strength improve, she is getting better at doing more and more things. Her latest act is the classic baby “go, go gadget arms,” where they manage to reach things that you swear are two arm lengths away from them. Today at dinner she reached over, grabbed the ketchup bottle, started to chew on it, and then got angry when it was too heavy to hold. Dan finally gave in and just held it up for her.

Today it’s the ketchup, yesterday it was my bills.

PT: Week 3, Hard Work

I was a little worried that Averi wouldn’t have improved much today since we missed the last two PT sessions, but she actually did really well. Abbi worked with Averi on the exercise ball for a while getting her to roll onto her side to get to a sitting position and also lying on her stomach and putting weight on her arms.

She also worked on rolling over (Averi hates being on her stomach, although I can’t really blame her), lying on her tummy on a wedge so she can extend her arms to the ground, and bearing weight on her arms while sitting.

I told Abbi that my goal is for Averi to be able to sit up unsupported by her birthday. She smiled hesitantly and said we would try (at least she’s honest). We then spent a lot of time working on sitting.

We realized that Averi likes to overexert her back which throws her backwards. Abbi solved this problem by propping Averi’s butt up just a little with her foot. This counteracted Averi and she was able to sit for what seemed liked a good 20-30 seconds without any support.

I asked Abbi if it is painful for people with low muscle tone to use their muscles. She explained that it’s like working out every time you try to do something. If sitting is a 2 for me on the effort scale of 1-10, it’s about a 7 for Averi. No wonder she is such a cuddle bug, she must always be exhausted.

OT: Week 12, One Step Forward, Two Steps Back

We didn’t go to OT last week since we were living it up at the beach for Easter. As far as eating goes, these last two weeks have been slightly frustrating. I thought that as Averi felt better, she would start eating better as well, but it appears that she has followed true Averi style and taken several steps backwards.

She now refuses to take her bottle at all and has resorted back to arching her back, crying, and even pushing the bottle out of her mouth and replacing it with her thumb (which makes for getting food all over the place). The last time she did this we gave her a several day break from the bottle which helped a lot so I tried it again with zero success.

In my desperateness to find some way to get milk into her I tried adding baby food to her bottles. This sort of worked, but only with fruit…the squash milk didn’t go over so well. At one point I even put straight prunes in her bottle and she drank a whole ounce (30mls). I finally came to the conclusion that she doesn’t like the taste of my milk…you know the milk that I supply to her soy and dairy free and through the process of using a pump (no, my feelings aren’t hurt, why do you ask?).

Spoon feeding is also not going as well as it used to, which is depressing because it has always been her strength. She insists on putting her thumb in her mouth after every bite, thus getting food all over everything except in her mouth. I realize that this is her coping tool but it is proving to be counterproductive. I have started trying to get her to use her pacifier at meal times but she still prefers her thumb. Remember the days when I was excited that she was sucking her thumb because it was giving her oral stimulation? Yeah, I’m over it now.

When I asked Frances about these new issues today, she explained that the aversion to my milk is probably because she associates that flavor with pain since she has such bad reflux. I was worried that flavoring it might be counterproductive but she said that it’s fine and we will slowly wean her off of it.

So we made up a nice bottle of thickened milk and prunes and Frances tried to feed Averi. Of course she drank the whole 30 mls and then another 20 mls before it was time to go. Frances just said to keep using chin support and make sure to pound on her back every once in a while to break up the wetness. We’ll see.

She's Shrinking!

We went to see the nutritionist again today for a weight check and feeding assessment. When the nutritionist pulled up the graph, Averi hadn’t gained any weight in the last 3 weeks and her length had decreased. I insisted that she is not in fact shrinking and made the nurse measure her again. She was the same length as before.

I wasn’t really surprised since we just moved her feeds around last time and didn’t increase her total daily amount. The nutritionist called my bluff and asked if I had started adding olive oil to her foods…nope. I did start giving her meats, however, and they give her some nasty smelling poo (so if they don’t believe me they can go smell her diaper).

She also pointed out that I was supposed to increase the feed rate on her continuous night feed. I honestly didn’t know that, but I checked it when I got home and she had actually told me to do it. Whoops!

She decided to increase the feed amount from 100 to 120 at the 3 daytime feeds and from 270 to 300 during the night. She was considering adding more but I insisted that Averi is starting to take more baby food orally and that the added 90 mls a day would be fine.

I have yet to figure out how they decide how much food to give her. I know they use her weight to figure out how many calories she is getting each day but the math always seems to come out weird. Apparently she is supposed to be getting between 90-100 calories per kg each day. I say stop looking at the calculator and try looking at my daughter, she’s awesome!