kristaphillips Sorry for the 2nd update in a day.
Annabelle’s feeding clinic was a wee bit of a failure. I knew it would be because of her cold, but I think it’s super important for her to get into the “routine” of going and was afraid skipping a week would get her OUT of it. So, we went, played a little, cried a lot, tasted a little pears, and that was about it.
Stopped by cardiology for a weight check.
Annabelle lost weight AGAIN.
9.93kg to 9.70kg
In October, she weighed 10.3KG at her most.
To underscore this… she can still wear the same clothes she was wearing at her 1 year birthday (I put her in her short-sleeve heart dress she wore on her birthday last Sunday… with a sweater…)
We are also all concerned about her cold. We’re having to go up on oxygen (to the point where I had to call pulmonology to ask them to change our O2 script so we can get a higher flow meter and more oxygen tanks…)
Granted, this is just at night and at nap, but still. It is just worrisome.
Cardiology “threatened” (in a nice way) that if they don’t see an increase in weight soon, they will have to admit her to figure out what is going on. Our clinic appt is on Monday.
They also noted if her cold gets worse, they may want to admit her for that too to be able to keep a close eye on her. Annabelle’s lungs don’t handle things well:-(
So, there will be some changes in the Phillips’ household.
I’m going to be putting on my thinking cap and trying to find a way to add more calories to Annabelle’s diet without changing her schedule. They have suggested continuous overnight feeds, which I am 100% AGAINST. They’ve also suggested added a 5th feeding to the schedule during the day, which I am 75% against.
Having an active 18 month old tethered to a short-cord feeding pump 5 times a day is not really feasible. Before, we had a docile little munchkin who laid or sat in one spot and played toys all day. The Annabelle we have today is NOT that way, which I am SUPER thankful for, and I feel it is worse for her to limit her activity even more.
I am also officially limiting our “outings” for the rest of cold/flu season. We are on anti-germ mode, so where as before I was a big believer in “living life” with Annabelle because really, a bubble isn’t good for anyone… we are going to be bubble like for a while! Well, Annabelle will be anyway.
Prayers for our family, Annabelle specifically, are appreciated. There is just a huge cloud of “stress” and yuckiness at the moment, specifically today, and I really don’t care for it:-(
Also, Miss Anna Reese, Annabelle’s friend, is on her way (or at) the hospital right now with an illness as well, so please pray for her too!!! (and keep it on the down-low… we aren’t telling Annabelle as we all know their all-too-frequent habit of going into the hospital at the same time!)
I'm sorry Annabelle isn't doing well. I pray for a rapid return to her good health.
I'm so sorry to hear all this and am praying for all of you! I can't imagine the stress on the family and hope you all can find some wonderfulness during this. Also, praying they figure out the issue.
Yuck….
Some kids that I know that are various types of tube feedings are able to get this backpack feeding pump. That way they can be mobile, but still get their feedings. I know that Annabelle isn't walking on a regular basis yet, but she still might be able to wear the backpack while her feeds are going, that way she can continue to stay mobile!
We used to use one of those bouncy/saucer things (sorry, couldn't think of a better name for it) if he was feeling really active. The rest of the time we tried to keep him in the high chair during meal times so that hopefully he'd associate sitting at the table with his belly feeling full.
I'm so sorry, Krista. I pray for you all and Annabelle every day but I'll increase those prayers right now and for Anna Reese (whispering that) as well.
Yuck is right! Poor little Annabelle. I'll be praying for you guys, and that she gets better soon!
Praying, Krista! (((hugs)))
I will be praying for her and your whole family.
I am so sorry. I hate that I know all too well what you are going through with the weight issues. It sucks in such a big way. I wish I had some wisdom for you, but we aren't having much luck with Hope. Do you use Benecalorie? It has 330 calories and is only 1.5 ounces. I add it to everything.
I will be saying many prayers for you (because I know the stress you have to be feeling) and Annabelle to kick this cold soon.
I'll ask about the benecalorie! I'd forgotten that I'd heard someone else talk about that! Does hope have any GI effects with it? That's my biggest concern, is how things will effect her tummy…
Lifting prayers up for Annabelle, Krista.
Hi Krista!
I am a first time commenter, but long time reader. I am truly amazed at your little fighter, Annabelle .. she's a true miracle! I will be praying for her and the rest of your family.
I don't know, nor do I recall, what exactly you are feeding Annabelle, but have you tried making your own "blend" of puree? I know that this will take lots of extra time and money, but it may be extremely beneficial. Avocados are high in fat and calories as is flax seed oil. Just a suggestion that you may want to consider or talk to Annabelle's doctors about …
Praying and hoping Annabelle feels better soon!
Meg
Thanks!! I have considered the blended diet… I am not able to do it completely at the moment (mostly because I have neither time nor money to try… mostly the $$ part… and while that it is sad, it's reality because she also needs a roof over her head!) anyway, my plan at the moment is to start adding some blended foods on top of what she is getting, but not replace it completely, to try and add some calories.
Thanks everyone for your prayers. They are really appreciated! Mommy just isn't handling well today… but hoping I just need a good night sleep and some Jesus time to recharge.
Will probably skip OT therapy tomorrow… I think Mommy AND Annabelle need a break and some home/chill time.
David's nutritionist told us to add some sort of fat to each meal. This is usually 1 tsp of oil or 1 tsp of butter mixed in with everything else (we're at a stage where we puree our table food for him). Also, whenever we mix his food we use half and half. Hello plumpness! David was doing so well that we took the half and half away for a month and he dropped 20oz! Yikes! So we added it back in a week ago. Even if she's not taking anything orally, I bet you could still add something to her formula to give her extra calories and fat without adding extra fluids. Based on some of the other comments it definitely sounds like there are options out there that should work for Ms. Annabelle. Praying for her and you!!
NOt sure we can do the 1/2 and 1/2… she is on a peptide formula as it is… but it's worth a shot!!!
I'm just hoping her belly can handle stuff like that… we shall see!
(((Hugs))) I totally agree with your continuous feed stance – been there, done that, avoided it at all costs.
As for feeding, Claire would not do purees at all – and still doesn't. She didn't eat any food until she lost her tongue thrust and was able to manage small pieces of avocado. She's not on the feeding tube anymore, but we have to feed her 6+ times a day to get enough calories into her to sustain her weight (at 19 months, she weighs a pound less than Annabelle). I know you're getting feeding therapy so you probably have all the advice you need, but I also second the avocado and adding oil to everything – we do coconut oil. Egg yolks are also a favorite here.
We're semi-quaranteened this winter, too, after a stint in the hospital in early November and another near hospitalization last week. Continued prayers for you, Annabelle, and your family.
See… she's not "too small" by % wise, in fact she's exactly in line with her height… but they are concerned with her progressive weight loss and are trying avoid her hitting that point.
Will ask about the coconut oil, egg yolks and avocado! I'm excited about getting extra ideas!!!
I'm not looking forward to the quranteen… and have resisted it, but I think it's time. *sigh*
John is 16m (17m in 4 days… HRHS/TGA/Goldenhar), and he has trouble chewing solids, so he is still mostly on purees. His "formula" is Boost Kids Essentials (same as Pedisure), since he is handling it well. He is on 32 ounces per day/night. I'm just going to share how he eats in case it helps at all. He has a low stomach volume, so his 4 ounce bottle is too big at once. So I feed him half of it. He has no trouble sucking it down, but doesn't really want to so he has to be fairly distracted. Unfortunately, tv works great, so I do what I have to do and that is put him in his rocker chair, turn on one of his favorites, and sneak the bottle in his mouth. He is a sensory issues type guy so he is also needing to have his satin blanket in his hand as well. He eats his 2oz in about 2 minutes, or less, with a stage 3 nipple Dr. Brown bottle. When he's done we shut off the tv so he is back to playing. An hour later, do the same thing, so that he gets his 4 oz total, take the next hour later to do some puree (full fat full calorie yogurt, but he doesn't have dairy issues), buttered veggie, fruit with coconut oil mixed in, etc. Whatever he is eating, has to be calorie rich. And then start over again next hour with bottle. I stretch it a bit when he is napping. So at night, he is to have 3 boluses. I run them over an hour each, 3 hours apart, by programming the pump. I could put it on continuous but he is handling this so it is better to keep his tummy used to the 4 ounces. I actually don't mind that he is fed while he sleeps, because that is when he is still!!! And this way, the only time he is hooked up is at night, none in the day unless he is ill. Once he is able to do more calories in the day, we can stop the night feeds. But it is keeping his weight at a good level for him. I hear you on the illnesses too… it has been one cold after another this year!! I do keep him home a lot but with 8 sibs at different schools and workplaces…. impossible to keep him from getting anything, even with the Sam's Club sanitizer at every corner.
Praying for Annabelle, you and your family. This must be a frustrating time. Maybe I'm a bit ignorant and simplistic here. But, shouldn't the doctors first consider her weight drop is caused by her new mobilization? She is simply burning more calories? Anyway, praying you find a way to get Annabelle more calories. Also praying Annabelle tolerates this well. Praying for healing of the cold and ear infection. Praying God protects her lungs, keeps them clear and continues to strenthen them. Praying God gives the doctors wisdom and has Annabelle in the perfect location to fight this illness. Praying for that "peace that surpasses all understanding" for you and your family.
My niece was born without a pituitary gland and had 24 hour feeds for the first year and a half of her life(her body couldn't maintain good blood sugars without the continuous feeds). They had a special backpack that she wore and it was never a problem. She learned to walk and everything with that thing on. That might be something you could look into. Their insurance bought hers and the portable pump too. She was hooked up at night by iv pole and long tube.
Krista,
I know tube feeding can be tricky but we added a little cereal at times to Daniel's formula to give a little extra calories. I know you have to be very careful with this or you can block the tubes. Just something to think about if you haven't already.
I think the staying home tomorrow will be good for both you and Annabelle. You both probably need the rest to recuperate. We will increase our prayers for Annabelle and the rest of the family.
By the way, I didn't read yesterday's post until today but I LOVE the picture of your honey with his little girls!!! So precious!
Praying!
I hope Annabelle is feeling better. I have a child that has special needs and when he gets sick we end up at the e.r. I read you took Annabelle to therapy when she was sick. I understand you don't want her to get behind. However, my son can't go to therapy all winter because people don't stay home when they are sick. So, please think about this aspect of it. I'm sure Annabelle didn't get that much out of therapy being sick and now other people are exposed to what she has.
I totally understand that! However, Annabelle keeps a runny nose and light cough ALL winter as well, so it's never easy to know if she is sick or if this is just Annabelle (this time, she ended up definitely having a virus!) We keep her secluded in her stroller so she isn't touching chairs or anywhere close to any other child, as we would never want to share our germs! I also e-mailed the therapist before we went, asking if she felt like we should come or not, and forewarning her so she knew to clean extra good after we left.
Unfortunately there are sick people EVERYWHERE, and since colds and things can last for weeks, I totally get why people feel like they have to go out even though they aren't feeling 100%. We guard against germs as much as possible, but we all have to make the decision that is best for our families.