OT: Week 11, Recovering

Averi is still working on recovering from the croup and hasn’t really had much desire to drink or eat lately. Usually we offer her the bottle and then end up having to spoon feed it to her anyways. I’m hoping that she will get better soon and be able to breathe a little easier.

We decided to try breastfeeding again so Frances could see how Averi was doing. I haven’t really put a whole lot of effort into it because Averi still bites a lot. Every time I tried to get her to latch on, she would just start chewing.

Frances saw my hesitation and told me to just push Averi on as far as I could and she would pull her chin down. Yes Frances, that sounds great. Let’s give her more to bite onto. Why don’t you start lactating and try that trick yourself? Luckily Averi didn’t show much interest after that and we moved on to trying the bottle.

Frances tried giving Averi the bottle for a little while but stopped near the end of it because she was sounding so wet. After pounding on her back for a while, Frances finally realized that I was right when I said that there is no way to make this girl cough. It drives me crazy trying to get coughs out of Averi because I know she would feel much better, but she refuses to cooperate.

Frances said to keep using chin support to make it easier for Averi to swallow. Hopefully she’ll start eating better as her health improves. (I know, I know, we are bad parents, but try to tell me that face isn’t funny.)

PT: Week 2, Still Croupy

I seriously considered not taking Averi in to PT today but we are going to be out of town for the next two Wednesdays and I didn’t want to miss three weeks in a row. Plus I figured she’d cry through all of it whether she was sick or not. Little did I know that she was really going to let us have it. She screamed and snotted the entire time.

Abbi continued working with Averi on strengthening her arms. It’s amazing how lazy she is about using her arms. Literally every time Abbi made her put weight on them she would throw herself backward to get away from it. She especially doesn’t like leaning to the side while in a sitting position and propping herself up on one arm.

Averi is getting better at sitting and can sit while only being supported on her hips. She is also doing better about keeping her hands in front of her. I really think we can have her sitting independently by her birthday.

After PT, Averi felt really warm and I finally decided to take her in to the pediatrician. She had a really hard time breathing last night and couldn’t even sleep in the swing because she was coughing so much. When she breathes it sounds like Darth Vader and the fever made me worry that she might be getting an ear infection.

So, on a day that we had no doctor appointments, we headed to the doctor. They told me that it was upper respiratory (duh), she didn’t have a fever (right at that moment), her ears looked fine, and to just keep an eye on her. Wow, I feel much better. Hopefully we will all get better soon.

Constipation

As we walked in to Averi’s GI appointment today, the nurse informed us that our doctor had an emergency come up and we would be seeing someone else. With Kaili I’d be fine with that but it’s a little bit more frustrating when your child has a long list of chronic problems.

Every time you see a new doctor you have to lay everything out on the table again, because they can’t seem to be able to read charts, and it makes for a long visit. Fortunately, Averi doesn’t have too many negative things going on with her GI system right now and the doctor was really nice. He said that her G-Tube site looked good and he didn’t need to worry about weight gain since Nutrition is following it.

My main concern for him was about Averi’s constipation. I know you are probably all tired of hearing about her poop (me too) but it’s hard to ignore when she screams bloody murder every time she tries to go, even if it is 4:00 in the morning.

When I talked to the GI nurse about it a few weeks ago, she said to give Averi 1-2 tsp of Milk of Magnesium every day for a week to help clean everything out. It took three doses before anything happened, and then it all came out. In fact, one day Dan thought I said to give her 1-2 Tablespoons, and we spent the next 24 hours wiping poop of off just about everything she touched.

Now that she’s been off of the Milk of Magnesium for a week, the constipation is back. The doctor said that we are going to have to keep her on it, along with giving her the juice that Nutrition suggested. I’m not too crazy about keeping her on a medication long term but he said that as she gets older and her muscle tone improves (yah, right) we should be able to get her off of it.

I also asked about doing a follow up biopsy on her intestines to make sure she doesn’t have any more irritation from her allergies. Her doctor had mentioned this to me before but nothing was noted in the chart so I was told that we would be contacted if a follow up was necessary.

Croup...Again

Averi, Kaili, and I have had runny noses and colds for about a week now. Just when I thought she was getting better, Averi woke up Saturday night with a tight, dry cough and labored breathing.

By last night, she was barking out her coughs and could only sleep if she was propped up in her swing. It didn’t take long for us to recognize the symptoms of croup, since she’s had it before. The problem with croup, however, is that it is a viral infection so there is no treatment, other than humidifiers, cold air, and observation.

Since there wasn’t much use in taking her to the hospital, and we already had an appointment scheduled at the Down Syndrome Clinic today, we just waited it out. I called Frances this morning to let her know that we weren’t coming in and then headed to the doctor.

At the Clinic, Dr. Nash said Averi’s lungs sounded okay and just to wait out the next few days until the croup subsided.

The rest of the visit consisted of me updating them on everything going on in Averi’s medical life. I’m still unsure what the purpose of the DS Clinic is since they didn’t even bother to see her until she was 7 months old and we aren’t returning for another 6 months, and I’m pretty sure that the pediatrician is tracking Averi’s total history, but I do as I’m told.

After we got home, Susan, the Early Intervention Specialist from Help Me Grow, came. Lately we have been filling out a survey listing Averi’s interests and our daily routine. This is supposedly going to help us find ways to schedule working with Averi into normal life activities. I’m pretty sure my OCD tendencies and need to organize have already taken care of scheduling everything I have time for but I’m taking any advice I can get.

Hopefully tonight will be better than last night, Averi will be able to breathe better, and the croup will soon go away. I have a sinking feeling that this isn’t the last time we will have to deal with it though, since croup is more common in kids with Tracheomalacia.

Sometimes You Get Lucky

Luck just happens a lot less when our family is involved so it was a pleasant surprise! Today Averi had an appointment for a sedated echocardiogram to follow up on her VSD repair. The echo she had 6 months ago showed two leaky valves so Dr. Hershenson scheduled for her to be sedated today so that they could get a really good look at her heart.

We completed all the initial registration and then I left Averi with the nurse while I ran Kaili down to the Sibling Clubhouse. When I returned just a few minutes later, Averi was asleep on the nurse’s shoulder. The nurse told me that if Averi stayed asleep when she laid her down, they would try to do the echo without sedation.

She slept through the whole thing!!! With a little bit of help from her thumb, a warm blanket, and a very quiet and sneaky radiologist, we didn’t have to use any medication. I was SO excited!

Not only that, the echo “looked just like a normal echo.” Both leaky valves were healed and none of the chambers were enlarged. Her heart is just like a normal heart! We were long overdue for some good news.

Nutrition:
We also made our monthly nutritionist visit today. Averi gained 4 ozs and is now 15 lbs 3 ozs…apparently not heavy enough. She is finally at a point that I think looks healthy and I have yet to be concerned about her lack of weight gain.

I was actually a little worried about today’s visit because Francis, our OT, told me that nutrition is quick to call ‘failure to thrive,’ even when they know that a child is refusing to eat.

It didn’t get to that point, but they did tell me to start putting olive oil in her food to add extra calories. Seriously? That’s what I did for Kaili because she was below the growth charts, not sitting right in the middle of it.

She also told me to add baby food meats, which have more calories, and start giving her adult juice to help with her constipation. We decreased her 8 hour continuous feed at night to 6 hours, so that there will be a longer stretch of time before breakfast, and added that milk to her daytime feeds, so that her stomach will stretch and shrink even more between meals.

Hopefully we are taking the right steps toward getting rid of the G-tube. I’m always a little hesitant because she is always telling me that “there is no right way to do it.” As long as she eventually eats without a tube, I’ll be happy. :)

PT: Week 1, Finally

Today was our first adventure with Physical Therapy. I think Averi is really going to enjoy it (insert sarcasm). However, when I think about it, I wouldn’t like someone making me work out for a whole hour using muscles I don’t want to acknowledge.

We mostly focused on her trunk and arm muscles since we are currently striving for sitting unassisted and pushing up on her arms while on her belly in the hopes of one day crawling. Abbi, the PT, mentioned a couple of times that Averi really doesn’t like to use her arms. Really, and do you think that has anything to do with me wanting her to get PT?

First, Abbi had Averi do sit-ups on an exercise ball. Then we worked on rolling a little bit. She also had her lay on her stomach on a small wedge so that she could extend her arms down to the ground and not to work quite so hard to push up.

Mostly Abbi worked on sitting by slowly moving her hands down Averi’s trunk until she was sitting with only one support on her hip or all by herself (something she never does for me). We really have to work on getting Averi to sit with her arms in front of her so that she will start propping herself up on them.

Abbi even put arm braces on Averi’s arms so that she couldn’t bend her elbows and had to put weight on her hands. Do I have to explain why this is going to be the highlight of Averi’s week?

Luckily, she finished the session by sitting on the swing (more of a swinging platform) with Averi. This was nice because Averi actually didn’t cry and it required her to constantly engage her trunk muscles as she tried to sit.

I'm sure her snotty nose didn't help the situation and I know she didn’t love it, but do I sound like a mom when I say, “it’s good for her”?

OT: Week 10, Rollercoaster

If someone could please tell me where the exit is for this rollercoaster called ‘teaching Averi to eat,’ I would greatly appreciate it!

So, after a couple larger feedings and even taking a whole feed once last week, we spent this entire week trying to prevent her from crying every time she saw the bottle, again. I once more resorted to trying my crazy ideas. Trying to breastfeed even resulted in crying…and biting. Granted, she does have a little bit of a sore throat and wouldn’t even eat ‘solids’ one day.

Then, just when I’d given up hope that she would ever learn to handle liquids, Averi drank a whole feed (80 mls) Sunday afternoon. (I’m starting to wonder if she eats well on Sundays in hopes of tricking me into thinking that she doesn’t need to go to OT the next day and can sleep in.)

When I told Frances, she had me replay the whole day so that we could try to figure out what is promoting Averi to eat. We concluded that one, if she’s not pooping, she’s not going to want to eat, and two, she eats better when she’s tired, which is why she always eats best at lunch which is right before naptime.

She showed me a few ways to stimulate Averi right before trying to feed her, like laying her on her stomach or tilting her upside down. So, I now get to use my ‘free time’ doing that for 30 minutes before each feed.

I also tried breastfeeding again while we were there and Averi wouldn’t even latch on. I’m sure my hesitancy as she chewed on her bink had nothing to do with it. Frances then told me to wait until Averi opened her mouth and then shove it onto my breast as far as I could to remind her that she was not supposed to be nibbling. I told Frances that she could try that instead.

Oddly enough, as I fed Averi her other two meals today, she drank 40 mls at lunch and the whole 80 mls at dinner. Now I’m not complaining, but it makes her wimpy 20 ml feeds that much more frustrating when I know she can and has done better. Seriously, where is the exit for this rollercoaster?

OT: Week 9, First Full Feed

For how frustrating last week was, this week had some decent surprises. I only tried breastfeeding Averi about once a day (but isn’t my life isn’t full of free time) and of course it was never quite as effective as when we tried at OT, but there’s nothing wrong with a little cuddling while she sucks on a pacifier.

Then, on Thursday, something amazing happened. I was over at a friend’s house during Averi’s lunchtime feed and she quickly drank the 20 mls of thickened breastmilk that we always offer her. She still seemed interested so I filled her bottle up again, and then again. She drank a total of 50 mls, almost twice as much as she’s ever taken from a bottle before.

The next day we were out again during lunch and again she took 50 mls. I couldn’t believe it. So on Saturday I was really disappointed when she wouldn’t even take 20 mls.

Yesterday I decided to try and reenact the scenarios when she had taken more. I put her in her carseat instead of her highchair and then diverted my attention to Kaili and Dan instead of making constant eye contact. She drank the 20, and then 15, and then 15, and then 15, and then 15.

It took 45 minutes but for the first time ever I didn’t even have to hook up her pump after the feed because she drank her entire 80 mls! She even ate half a container of carrots after she was done. Of course when dinner came along she wanted nothing to do with the bottle but I had kept my expectations low.

When I told Francis about it today she wanted to see Averi in action so I tried my whole scenario again…with not as much luck. Then again, it wasn’t lunch time either. Francis said I should try stimulating Averi in the mornings with music and lots of movement in hopes of getting her more awake and interested in eating. She also showed me some facial muscle stretches to do before each meal.

I know we still have a long ways to go, but at least we know that it’s possible…one day.

Synagis

Averi has been receiving Synagis shots every month since November and I just realized I haven’t ever posted about it. Synagis is special shot that helps protect at risk babies from getting RSV, a respiratory virus.

There are limited amounts of it and it is expensive so only certain babies qualify for it. Averi qualifies because she was born prematurely and she has a heart defect.

Getting the medication into her consists of getting it in the mail, keeping it refrigerated, traveling to an office 20 minutes away because our regular office doesn’t have a nurse who can administer it, having a doctor listen to her lungs, getting the shot, getting checked on every 5 minutes for 20 minutes to make sure she doesn’t have a negative reaction, having the doctor listen to her lungs again, and finally getting to leave.

Hey, if it keeps her healthy, we do whatever it takes. Luckily, next month is our last one until flu season starts again in October.

Long Awaited Day

Just a few days after visiting the pediatrician I received a phone call to set up a time for Averi to get a Physical Therapy Evaluation. Halleluiah! So, after 10 months, we finally went in today to have her evaluated and set up a time to start receiving PT on a regular basis.

The evaluation went really well. Averi was pulling stunts out of her hat that I had never seen before. I told Abbi, the PT, that apparently we didn’t need her to do anything since simply being in the building was helping. (I later realized that the building wasn’t the solution since it’s the same room we have OT in every week =P )

Averi cooperated nicely with the strange PT, which is great since she is definitely starting to be more aware of stranger danger, rolled over front to back and back to front with only a little help, tolerated her tummy and reached forward instead of out, and even sat unassisted for a few seconds after lots of muscle stimulation. Have I mentioned how excited I am?

Abbi said that she had an opening on Wednesdays at 8 am. I have to admit that another early morning doesn’t excite me but Averi would die if we did OT and PT on the same day and she is always happy in the morning, so I took it. My schedule is quickly filling up.

In the afternoon we went to meet with Jennifer, who works with the Regional Infant Hearing Program. This was our first session since orientation and I was excited to see what she would work on.

First, she used a few different musical instruments, like drums and maracas, to ensure Averi responded to them. She will work toward getting further away and out of eye sight as Averi continues to respond.

She worked on a few different vocal sounds, like up up up, dooown, and aaaaaaahhhh, with accompanying toys. This will help Averi recognize the sounds and even imitate the alliteration before she can actually say the words.

She even let us take home a Baby Signing Times DVD so that I can start using simple sign language with Averi, not that she’ll be doing it any time soon but you can’t have too much repetition.

I’m excited about this program and I think we will learn a lot from it.

OT: Week 8, Nothing is Working

You might want to prepare yourself for this long and venting post. As far as orally feeding Averi goes, this was the MOST frustrating week I have had thus far. We started the week off using the Haberman Feeder with regular breastmilk but she would only take like 5-10 mls. Even then she seemed to be fighting it and sometimes coughed which meant that she was aspirating on the thin liquid.

Since this was a step backwards, I decided to try using the thickened milk in the Haberman on the medium setting. This was a little tricky since the thickened milk doesn’t work too well with the valve and led to no improvement and more crying. I concluded that this ‘special feeder’ was especially not helpful, got mad that I anticipated it solving everything and was therefore more let down than usual, and went back to using the slit nipple we had been using the week before.

Unfortunately, Averi had also decided that this was all a very bad joke and started screaming any time she even saw the bottle, no matter what nipple was on it. Long story short, I started getting desperate. I tried, water in the Haberman (to trick her into thinking it was just lots of spit), baby food in the Haberman and in the slit nipple (thinking that maybe she was bored with the taste of milk), letting her lap the regular and thickened milk out of a small measuring cup (which actually went sort of okay), swaddling her arms, holding her, putting her in the highchair, giving her toys to distract her (which she just used to pushed the bottle away), and finally emailed Francis on Friday.

Francis said that we do not want to create an aversion to bottles so I should just stop the bottle feeds for the weekend and simply spoon feed Averi the thickened milk and baby foods.

Francis and I both arrived this morning with several new ideas. Francis brought a Soothie pacifier with a thin tube poked through the middle of it. Since Avei hates the bottle but still sucks on her pacifier, she thought we could slowly push milk into her mouth through the tube in the pacifier and avoid the whole screaming drama. The only problem is that the system doesn’t come with a syringe, so I had to bring it home to experiment with this week.

I told Francis about trying to cup feed and that I stopped because the edge of the cup was kind of rough. She got out cup specifically made for beginning cup feeds that was much smoother and even had a nose notch cut out of it. She then showed me how to use it correctly. Apparently Averi’s tongue is supposed to go under the cup, not in it like I had been doing.

Then I told Francis my craziest idea yet and asked her let me know if I had finally lost it. I suggested trying to breastfeed, since it doesn’t look like a bottle, she has complete control over the flow rate, and she doesn’t bite nearly as much as she used to. So, after totally convincing myself that she would never breastfeed, I cuddled up with Averi on a beanbag and watched her latch right on. She did lots of little sucks, a few long productive sucks, and stopped to look around any time any one said anything. We couldn’t believe it.

She did bite a couple of times (thank goodness for nipple shields – a thin cover that gives her something to latch on to and slows the flow) and we had to do some fancy switching between pacifier and breast, but it was an overall positive experience. So I am now supposed to add trying to nurse every three hours to my schedule and ignore the rollercoaster that my emotions are riding as they attempt not to get too excited about something I have tried really hard to put behind me.

Finally, Francis tried giving Averi a bottle, just to see her reaction and try to find a solution to it. We came to a rather interesting conclusion. When Averi stops sucking she bites down on the nipple. The problem is that she doesn’t move her tongue first, and is therefore biting herself. No wonder she has an aversion to bottles now – essentially, they hurt (even if she is the one doing the hurting). Hopefully one of the techniques we tried today will be a solution.