More Appointments

Today was another fun filled day of one doctor’s appointment after another. These days are exhausting but always productive.
Pediatrician:
Our first stop was at the pediatrician for Averi’s 9 month check up. These visits mostly consist of me updating him on everything all of her other doctors are doing so that at least someone has all of her information in one place. I’m sure that by now his office is pretty tired of filing write-ups in Averi’s folder. :)

He brought up one doctor’s concern about her being overweight and said that he thought she looked good, especially since most babies with DS are skinny. Ummm…ok. I told him that appointment was 2 months ago and that I think she looks much healthier now (you know, now that I’ve taken her feeding amounts into my own hands…whahaha).

I also showed him the PT evaluation and expressed my concern for her to receive Physical Therapy. He said that I could sign up for Help Me Grow and when I explained that we were already getting it and still not receiving PT he said he could write a referral to the hospital. FINALLY! Hopefully we will hear from them soon.

He also did a quick observation of her skills and put her at about the same developmental stage as a 4-5 month old. Apparently the geneticist knew what she was talking about when she said that individuals with DS usually take twice as long to develop skills. It’s one thing to hear it and a completely different thing to actually see it happening to your own child. I sometimes find myself being happy that I don’t have any close friends with babies the same age as Averi so that I can stay oblivious to what she could be doing. Besides, it’s not like she isn’t working on enough things right now anyways, right?

ENT/Audiology
We then drove to the hospital to visit the ENT so he could follow-up on her laryngeal cleft repair. We waited forever, talked to a resident while he examined her, got her to sleep, and woke her up so the ENT could ask the same questions and do the same exam. He said everything looked great and that the swallow study cleared her to start eating. Really, are you sure?

I asked him if the surgery would affect her voice, since it was on part of her voice box, and he said that he heard a little rattle when she cried but nothing when she babbled so it shouldn’t really affect her voice.

I also asked him when we should follow up with Audiology and he sent us right over. They tested her ears for fluid and both were clear. Then they tested for response to sound and everything was the same, the left ear is still normal and the right ear still has significant loss. Finally, the audiologist sat me in a sound booth with Averi on my lap while she flashed toys if Averi looked toward a sound. That lasted all of 5 seconds before Averi decided that she had had enough of this long day and started crying.

Finally we went back to the ENT so he could tell us we could go. It’s a good thing he’s a really good doctor or I would be way more annoyed.

Nutritionist
The last appointment was with the nutritionist at the Neonatal Clinic. They always weigh Averi to make sure that she is getting enough calories and growing nicely. Well, she weighed in at 15 lbs, a loss of about 6 ounces since last month.

Was I concerned? No. Did the nurse freak out? Yes. She left, I got Averi dressed, put her to sleep, and then the nurse returned and told me to get her undressed so she could weigh her again. Seriously? Guess what, she weighed the same 15 lbs.

When the nutritionist came in she told me that obviously a weight loss wasn’t ideal but that she was still a good weight so she wasn’t too concerned. Then she contradicted herself and told me to raise her feeds. I simply smiled and nodded my head while knowing that I was not going to do a single thing different with her feeds.

I asked her about Averi’s constipation (I know you all want to hear about this) and she said to stop giving her the vitamins with iron, feed her oatmeal and not rice cereal, continue giving her prunes, and possibly add some water to her feeds.

Finally, I asked her if it is okay that I have been slowly increasing her feed rate so that we can eventually do like 20 minute bolus feeds (just pour it in slowly instead of hooking up the pump for a longer period). She said that sounded good, since boluses are a goal. See, I can make wise decisions about her feeds without even being told. It’s almost like I know what I’m doing.

Thank goodness this day is finally over!

OT: Week 7, Haberman

There isn’t really any news this week, but at least that means there’s no bad news. We introduced carrots and fortunately Averi likes them. I forgot how bad they stain though, and she had an orange face several days this week. :)

As far as our OT session went, I have three words: Haberman Feeder…Finally! At last we were able to get our hands on one. This is a special feeding system that allows milk to be expressed by sucking or chewing (Averi’s preference) and has three different flow rates. There is a valve inside it that doesn’t allow milk to flow through it unless Averi has gotten some out, which prevents her from getting choked up.

Because of the way the nipple works, however, we can’t use the thickened milk so we have to use regular milk on the slowest setting. Hopefully this will allow her to get used to swallowing thin liquids without feeling overwhelmed.

Francis used it to feed Averi during the OT session and she took the usual 20 mls that she takes of the thickened milk with a slit nipple. She said to stop using the thickened milk and just focus on the Haberman this week. Even if she isn’t taking any more than before, it will be really good for her to get used to the thin liquids, since that is our ultimate goal.

As I was getting ready to leave, Francis gave me the write up from the PT evaluation she did last week. A score of 6-7 is below average and Averi scored a 1 on gross motor skills (sitting up, rolling over, etc.). I’d say that should be enough to get someone’s attention to make a referral.

I also asked Francis what we have to do to continue getting OT since we were only approved for 8 weeks. She said that she is the one who decides when we are done and that obviously we are not so we can just keep coming. She then called me later today and told me that while she was filling out paper work she noticed that our insurance does not cover Occupational Therapy. At $250 a session, that is a concern. I will definitely be contacting our insurance to work out the details.

A Whole New Meaning to Wetting the Bed

Two nights ago, when I went in to change Averi’s diaper and turn off her feed, I found her cold, clammy, and soaked. No, it wasn’t a really full diaper, it was just stomach contents.

Remember that medicine port I was really excited about when she got her Mickey button? It was open and her feed had just been pumping out onto the bed as well as letting the food in her stomach pour out as well. This wasn’t just a little wet that I could cover up either. I had to strip the bed, wipe her down, change her clothes, throw everything in the bathtub, wipe the mattress, and remake the bed…at 5 in the morning.

But the story doesn’t stop there. Last night it happened again! So, my excitement for her starting to find her legs and touch them has quickly died as I realized that this means she can also reach down and grab her feeding tube. I put a new extension on her tube in hopes that the new port will have a tighter plug but I’m pretty sure that this is not the last time I will find her lying in her milk.

OT: Week 6, or PT

This week was good and bad. The good news is this girl can eat some oatmeal. The bad news is it is plugging her up and she screams whenever she tries to poop. She has also decided that vegetables, like the green beans we introduced this week, are yucky and either blows raspberries on them or won’t open her mouth after a few bites. She now recognizes the bottle as well and will yell at me, not scream or cry, but yell “ahhhhhhh,” when she sees it.

She still has a preference for thicker foods so I have been using my baby mill to grind up bananas for her, since they are thicker than baby food. We also introduced prunes and she seems to like them as well.

I asked Francis today if I should only feed Averi foods she likes since we are working on liking eating. She quickly said that once we loose that battle, it’s never won so we have to fix it now. She said to scoop some veggie onto the spoon and then dip it in a food she likes, like bananas. It sounds really nasty but I tried it at lunch today and it worked! She said that latter we will work on alternating bites between veggies and fruit.

Last week Francis asked me what Physical Therapies Averi was getting and was stunned when I told her none. So she told me that she could show me a few things today that we could work on along with eating.

The first thing we did was lay Averi down on a mat so Francis could show me some infant massage techniques to help with her constipation. I know you all really want to know about it, but she explained why Averi is more prone to have problems with this. Individuals with low muscle tone on the outside also have it on the inside. This means that her digestive system runs a little slower, allowing more fluid to be absorbed and causing her stools to be hard and dry. It’s all making sense to me now. Averi liked the massage and even peed on Francis to show her appreciation for stimulating all her abdominal organs.

Then, after several questions, Francis realized what Dan and I have been wondering about for months – several of the clinics Averi goes to have asked if she is getting PT, have said they would put her on a list, have said an evaluation needed to be done…and she has yet to receive any PT.

We then spent the remainder of the session doing a PT Evaluation on Averi, which includes using several specific toys and a thick notebook full of questions and numbers, so that Francis could submit the results to the neonatal clinic and we can hopefully get the ball rolling. Finally, someone is being proactive about getting PT. Averi really needs it!

I Miss It!

I had a moment with Averi today. She was starting to get drowsy while I was giving her a bottle. Kaili had gone upstairs to play and the quiet gave me too much time to sit and think. As I leaned over her highchair with my arm propped up on the armrest, she began aimlessly playing with my fingers as she sucked on the bottle. It made me remember how Kaili used to cuddle into me and play with my shirt and hands while she nursed.

I have already accepted that Averi will never nurse (that was a hard reality) but today just reminded me how much I loved it. There’s a closeness that only moms get to experience when they breastfeed their babies and I realized that this, crouched over a highchair with her hand in mine, was the closest thing I was ever going to get.

I teared up as I felt joy to be able to share this moment with her and then felt sad that this moment was worthy of such strong emotions. I love Averi SO much and she brings such joy to our lives but I often have to sit back and remind myself that she doesn’t and won’t ever live what some people would deem a ‘normal’ life. I am so grateful that she is a part of my life and I am a part of hers, no matter what obstacles get in our way.

Eye Doctor

Today I took Averi to see an optometrist…just kidding dad, we went to an ophthalmologist. For once, this was a doctor appointment I wasn’t concerned about because Averi is really good at tracking and her eyes can follow me from across the room. The only thing that worried me was when I got a reminder call from them saying the appointment could take 2 hours…to look at eyes?

When we got there they checked her tracking, which was awesome! :) Then they put drops in her eyes to dilate her pupils and sent us back into the waiting room for 20 minutes. After a quick nap (for Averi, not for me), we went back in so the doctor could check her prescription and look at her optic nerves.

She checked her prescription by holding up different lens to her eyes. Averi thought they looked really tasty and kept trying to lick them. The doctor found that Averi is slightly more farsighted in her left eye than in her right eye. This is nothing to be concerned about right now but can sometimes lead to the right eye becoming more dominate because it has the better prescription. We will return in 6 months just to be safe and check that the difference between her eyes isn’t getting farther apart. If it does, then she will need glasses (please no).

The doctor also checked her optic nerves and said that everything looked great. When we left, the doctor said that Averi could come back any time because she was the perfect patient.

You've got to admit, this girl's got the most gorgeous eyes!

OT: Week 5, Taking a Bottle, Sort of

I feel like we’ve made a lot of progress this week. On Tuesday I tried feeding Averi the applesauce with the crosscut nipple. She not only sucked on it, which she never does with the NUK nipple, but she swallowed without gagging and while keeping a seal around the nipple! Not only that, but she took 30 mls! That’s 3 times more than she’s ever taken from a bottle! (Do the exclamations tell you that I’m excited?)

I emailed Francis right away and asked if I could stop by the hospital and get some of the breast milk thickener so we wouldn’t have to wait until today. She obliged, probably thinking that I’m way too proactive, and we were able to try it out on Thursday. She only took 20 mls on the first try, but that was still an improvement.

We also introduced sweet potatoes this week. I guess I didn’t notice how much she was spraying food with her raspberries because the bananas and applesauce are light, but the darker sweet potatoes have opened my eyes. Everything within a 5 foot radius of her high chair is now splattered in orange.

She definitely likes thicker foods better because she doesn’t blow nearly as many raspberries with oatmeal as she does with runny baby food. I have realized that raspberries are her coping mechanism when she has trouble swallowing.

After talking to GI, I decided that their ‘don’t change anything’ policy was not conducive to progression, so I talked to the nutritionist. She said that there is no right way to mix oral and G-Tube feeds and that we could start doing three feeds every 3 hours during the day. Every 3 hours was right in the middle of nap time so I did some math and made a new feeding schedule of my own. Averi now eats orally every four hours 3 times a day, followed by a one hour tube feed and then has an 8 hour continuous feed at night.

When we went to OT today, Francis announced that she had great news, she had finally found a Haberman Feeder. She left to get it out of her bag and came back empty handed. Apparently it had fallen out somewhere. We are destined to never use one because I didn’t get mine in the mail from the Medela Rep. either. Maybe one day…

Francis tried feeding Averi a bottle while giving chin support. Basically she pushed up on Averi’s chin while she was sucking so that she wouldn’t open her mouth so much and bite her tongue. This helped and she actually drank a little more milk than usual. She said we could do that at home and to also try using a nipple with only one slit instead of two (the cross-cut one) so that Averi will have to work a little bit harder to get the thickened milk out.

P.S. I always just take Kaili with us and she loves it because she gets to play on all the Physical Therapy toys while we work with Averi.

OT: Week 4, Pacifier

I can’t believe we are half way through our OT sessions already. Presenting milk in the syringe is going well. Averi will usually take about 10 mls of milk with the syringe as compared to the 3-4 mls she takes while chewing on the bottle nipple.

She still doesn’t really do much with the puffs and I just barely found biter biscuits that don’t have soy in them so we haven’t tried them out yet. We also introduced oatmeal with apples and bananas in it this week and she did well with it. I’ve even noticed that she starts sucking on her tongue when it’s time to eat which means she’s anticipating it and maybe even getting hungry.

I’m really excited because yesterday during church I decided to try giving Averi her pacifier again. She used to suck on it really well but we slowly stopped giving it to her because she sucks her thumb to go to sleep. This turned out to be a problem because now she doesn’t suck on a bottle. Anyways, I worked with her for a while, rubbing it on the roof of her mouth, and she started sucking on it. Not only was she sucking on it, but she would keep it in her mouth. I think that maybe after a month of oral stimulation she is finally starting to be more aware of her mouth. Last night I even tried sticking a syringe in the side of her mouth while she was sucking on her pacifier but every time I squirted some milk in her mouth she stopped sucking.

Today Francis wanted to try using a crosscut nipple (a nipple with a bigger hole) with water. Sometimes this tricks kids into swallowing better because the water just mixes in with the spit. Averi took about 10 mls. We also introduced applesauce.

At the end of the session I asked if it’s ever okay to add something to the milk in her bottle since she does better with thicker consistencies. Francis said that they actually make a breast milk thickener and she would bring some next week. In the mean time I could try using the applesauce with the crosscut nipple to see if she liked it or it helped at all.

The Haberman Feeder ring is on backorder so we still haven’t been able to try it. I talked to my mom about it after OT today and she called her Medela Rep. He said that he would send 2 to me this week. Sometimes it pays to have connections. :)

Tonight, after a week of phone tag, GI finally called me back and told me to keep Averi’s feedings the same and not to worry about adding bolus feeds. I think staying the same doesn’t help with progression so I might change her feeds anyways.