Update: September 8-27

I haven’t posted for a while. Things have been a little more crazy than normal and I just haven’t had the time or the motivation. I do have a few posts that are in the works, and I’ll get them finished up soon, but I wanted to do an update first, since it has been a while. I think most of you know that Addison ended up back in the hospital due to her feeding issues. Even with running her food overnight and feeding her smaller amounts during the day, she was still throwing up at least once per day. When she threw up all over herself and my car (and it was forceful enough that her NG tube came out) after PT/OT on Thursday the 10th, we went straight to the ER at Akron Children’s. I am happy to report that we had a positive experience in the ER this time (definitely not the case the last time we took her there). They contacted the on-call GI doctor (Dr. Garcia) and he was willing to admit her to try to figure out what to do. He was concerned because the NG tube is basically a test we have to complete before we get the g-tube; and obviously, the “test” has not been going well. For whatever reason, having larger amounts in her stomach does not sit well with Addison. It might not be digesting fast enough or it might be aggravating her reflux. The doctor said there were a couple of medications that we could try to help with gastric motility. He was very honest though, and said the one doesn’t really work and the second one is not guaranteed to work either and has the potential for some serious side effects. (For my nurse friends – because I know I would be curious – azithromycin and reglan, in that order). There was no way we were going to give her any medication with the risk of such serious side effects, especially when there was a good chance it would not even be effective. So Dr. Garcia suggested that we try putting the tube in her small intestine, instead of her stomach (called an NJ tube). An NJ tube has to be placed under x-ray. Addison got an NJ put in before we were admitted. She had been crying most of the day and was showing no signs of stopping; I think she was definitely hungry at that point as she had thrown up what food she did eat hours before. Between her screaming and crying, she managed to push the NJ tube all the way out by the time the nurse finished admitting her. We decided to put an NG in for the night (since they would not be able to reinsert an NJ until the next day) and give her continuous feeding at 20 ml/hr (less than one ounce each hour). They had the surgeon see her while she was there. To make a long story short: she tolerated the continuous feedings well. There was talk of doing a nissen surgery with the g- (or j-) tube (which would stop her vomiting, more to come on that later). The surgeon decided that he wanted a test to evaluate her reflux before deciding what to do. So, we went home on Friday (only spent one night in the hospital), because the test needed to be done as an outpatient so the results would be more accurate. I think it was Tuesday that we went and got the pH probe placed, so that the severity of her reflux could be monitored and we could determine if her choking/vomiting happens when the reflux acts up. I do not have the results yet, but I would bet good money that the reflux correlates with her vomiting.

This is peanut with a tube in each nostril, one for eating and one for measuring pH.
This is peanut with a tube in each nostril, one for eating and one for measuring pH.

We started seeing the dietitian at the GI office to monitor Addison’s weight gain and make sure we are meeting her calorie and fluid needs. She wanted to try Addison on a higher calorie formula, so that the volume she needed to take in every 24 hours would be lower. It is 45 calories per ounce, instead of 27; so she only needs 13 ounces instead of 17 each day. She wanted to do a continuous feed for 8 hours at night, and two bolus feedings during the day. Addison threw up every morning at the end of the continuous feed. So the dietitian thought we should try less food at night and more during the day, but then Addison started throwing up during the day, because it was too much volume at once. So Mommy finally said enough, and put her on a continuous feed at 20 ml/hr, which is what she tolerated so well before. Since her formula is higher calorie now, it doesn’t have to run for 24 hours; I can get her total amount in in about 17 hours. The challenge is making sure she is getting enough water to meet her fluid needs as well. I figured if I could get her calorie needs met first, that was most important, and I will figure out how to work the water in. We have been on this road for a while now, and I know what tends to work and what doesn’t. If it keeps her from throwing up, I will deal with a continuous feed. Hopefully, it will just be temporary until the surgeon decides what he would like to do. If she’s not screaming and throwing up all the time, it makes my life easier, even if I have to have her hooked up to the pump most of the day. Seventeen hours a day really isn’t that bad though. It runs for 10 hours overnight (10 pm to 8 am) so that only leaves 7 hours during the day it needs to run. And who cares, as long as peanut is happy!

 

Addison’s occupational therapist suggested trying a therapeutic brushing technique to help calm her down, especially when she seems to be overwhelmed by stimuli (like being in her car seat and getting a bath). You literally use a brush to apply firm pressure to the lower arms, legs and the back. Then you apply gentle pressure to the joints (which gets the sense of proprioception involved, for my medical field friends). It is supposed to be very calming to the nervous system. According to the website OT-innovations.com, it helps the “mind-brain-body self-organize”. Our OT said she has had a lot of success with it. I have been trying to do it every day and it does seem to help. The effects are supposed to last for 2-3 hours. We are trying to do this before putting Addie in the car seat or giving her a bath to see if it helps. Fingers crossed that it will! (And bless pediatric PT’s and OT’s because our wonderful therapists have given me so many helpful ideas!) If you are curious, this is called the Wilbarger Deep Pressure and Proprioception Technique. I found some basic info at http://www.ot-innovations.com/clinical-practice/sensory-modulation/therapeutic-brushing-techniques/ .

Here's Miss Addison wearing a sleeper that I wore when I was a baby.
Here’s Miss Addison wearing a sleeper that I wore when I was a baby.

That’s enough about Addie, moving on to V and Ori. Violet can take steps if I hold onto her hands and walk behind her or sit in front of her and let her walk towards me. She’s such a big girl! She is seriously addicted to puffs; if I would let her, I think she would happily eat only puffs. (But I’m a mean mommy and won’t let her; she doesn’t hesitate to let me know just how unhappy this makes her). She is now pulling herself up to stand in her crib. She has to have a blanket to cuddle (and her thumb to suck) before she can go to sleep. (She gets the blanket thing from me. I had a blanket that I drug around everywhere for a long time – pretty much until it disintegrated).

Let me out!
Let me out!
Trying to get Tesla to be her friend.
Trying to get Tesla to be her friend.
Can you say cheese?
Can you say cheese?
And, serious face.
And, serious face.

Oriana is getting really good at crawling on her hands and knees, but when she really wants to move fast, she still goes with the army crawl. She pulls herself up on anything and everything. She has discovered that splashing in the bathtub is loads of fun. She prefers to have her Mommy and Daddy slaves feed her instead of feeding herself. She has been a bit grumpy thanks to her top middle teeth taking their sweet time coming through.

Such a happy girl.
Such a happy girl.
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Our little explorer.

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Today, we took the girls to the annual Aultman Remembrance Ceremony for those that have experienced an infant or pregnancy loss. Luckily, it stopped raining just in time for the ceremony. The girls were surprisingly good considering it was their normal nap time. We wrote Callie a note and sent it with the balloon release. It was very emotional and seeing all the other parents there who had lost a child made my heart hurt even more. It was wonderful to remember and honor Calliope, and it was healthy to continue the grieving process. We plan to make our own traditions to share with the girls and remember Calliope by. We will never forget our little butterfly and we want her to be a part of her sisters’ lives as well.

Balloon release
Balloon release
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Don’t take my picture
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Addison was cuddling with Daddy; I didn’t get any pictures of her at the ceremony.
We "lit" a candle for Callie.
We “lit” a candle for Callie.

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I have not even taken time yet to see what the month of October looks like for us. We are planning on celebrating the girls’ first birthday in October. I am not sure what doctor’s appointments we have and if it looks crazy or semi-calm; not that it matters, because something always comes up when it is relatively calm. Hopefully I will get a few more posts up over the next couple of weeks. Until then…baby giggles and slobber and attitude (at least in our house).

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cmathes10

Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.

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