“Double Fisting” isn’t what it used to meanThe babies had a follow up pulmonology appointment today. The day was absolutely brutal. We won’t go there. We’ll just focus on the babies:
- Paige is done with the apena monitor. Woo hoo!
- Cole isn’t it. Boo!
- Paige looks and sounds great. No follow-up for 2 months. Woo hoo!
- Paige is changing her diet. Since the Atkins diet is so passe, she is going to try the South Beach diet. They want her to go on 22 cal supplemented with rice cereal (Just like the peed wanted, more carbs). However, we’ve tried to feed her that and she can’t seem to suck the formula out of the bottle. We bought special Y-cut nipples (Dr. Brown), and she had trouble eating it (any moms have any advice about that, please chime in). So she is going to go on 26 cal with Polycose supplement (carbs baby!). We were told that high cal formula is very protein rich and could cause kidney problems. Super!
- Cole has plateaued on the growth charts. The doctor feels he should be doing much better than he is (I couldn’t agree more). Tobie described his poor eating habits and he wants to rule out reflux (I always thought he might have silent reflux after someone mentioned it to me). He is going to get some sort of GI work done next week (maybe a scope, don’t know what procedure yet). He’ll also have a chest x-ray. That should hopefully tell us if anything is going on inside that might cause his poor eating.
- Cole is also going to go on the Polycose for extra calories.
- We’ve been giving Cole inhaled steroids which is an absolute nightmare. If you put anything around Cole’s mouth he freaks out. So we are going to try a nebulizer to administer the roids to make sure he’s getting his full dose.
- Cole will have a overnight study done next week with his O2 at .25 instead of the usual .5. He’ll be hooked up to his monitor all night and them the doctor will download the data to see if we can keep him at a reduced O2 level.
So all in all a mixed day. I welcome the day when we go to a doctor’s appointment and they say “Everyone looks great, I’ll see your kids in 6 months for a check-up”.
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Sorry to hear it was a rough day. kudos to Paige for getting off her monitor. One down, one to go!!!! I wish I had advice on the eating. We were also on the 22 cal. diet but that seemed to do the trick. Is Paige also still on Simply Thick? That PLUS the rice cereal will make it downright IMPOSSIBLE for anyone to suck through a nipple. Two thoughts, this is from my step-mom. What about if you try feeding her with a spoon since it will be so thick? It will be a pain in the a## but if it will work…Second thought, what about jsut a plain ole straw that you will pull the formula out with and then let her suck the straw? Kind of like what we all did as a kid but got yelled at for doing.
We went through the GI workpu with Ella and it wasn’t too bad. She had an endoscope done finally because she was still on her feeding tube and at home and stillnot eating well. She was under for it and unfortunately had to stay over since she was on her monitor still. Is Cole on any type of reflux medication in the meantime? I know, not another freaking medication!!! Aidan is still on PREVACID and it is a miracle drug. Push for that if he had to take anything.
Again, I will offer my help if you need it. It is hard to deal with all the preemie issues when you son’thtink anyone else can understand.
Suzan
We were using Soothie brand bottles (from First Years), and 22 cal w/ 3/4 scoop rice cereal went through fine when using a Stage 2 nipple. However, our girls will no longer take those bottles, and we’ve learned that the latex nipples from the hospital fit evenflow bottles and also work well (I think that the holes got bigger through multiple sterilizations).
When Lessa had her upper GI, it was relatively painless for her…
imagine taking a chest x-ray while drinking a bottle of barium milkshake.
I think the worst part was me having to hold down her arms and legs (while the tech fed her the bottle) so that the other person could read the x-ray!
Our reason was similar - let’s rule out any physical abnormalities. If nothing shows up (it didn’t), than the default explanation is reflux.
Congrats on Paige getting off the monitor… and good luck to the both of you for being able to cope with that. I know that the monitors provide a piece of mind that nothing else can…
As for “Everyone looks great, I’ll see your kids in 6 months for a check-up,” that’s also scary! What, no follow up? No one to make sure that the kids are doing okay? No weights to find out if the smaller one is really gaining or if she’s plateauing or regressing? When our pediatrician told us 3 months, my face fell. (She said we can come in earlier if we’d like… WE’D LIKE!)
Lastly of absolutely brutal days - my assumption (and I could be WAY off) has to do with the logistics of feeding and packing up and traveling to the doc and hoping that they don’t get hungry there and have to feed again, etc. (Granted, I’m sure that there’s also there were also some brutal emotions going on after such an appointment, as well.) I remember having 2 doc appts in one day, and saying NEVER AGAIN! I remember that we would start getting ready at 8am for a 2pm doctor appointment, that didn’t end until after 5pm. I remember screaming babies that I would try to feed simultaneously because they were so hungry (this did work on 2 occasions), I also remember trying to feed 2 babies simultanesously so that I could try and leave the house on time to get to an appointment (this NEVER worked, and would result in 3 crying girls). Those days are hard, and I think sometimes it’s even harder because people don’t always understand what it takes to get 2 babies ready… on time. After having another brutal day this past Monday (for different reasons), it helps me to appreciate that there are good days, and that not every day is a brutal day.
WOW….I am so sorry that you had such a long & hard day. I am glad Paige is doing so well that she can come off the monitor! I think you should try the spoon like Suzan suggested - what can it hurt ??? Except it is probably really time consuming. GREAT - just what you need - something that is going to take more of your time… As far as Cole goes -well, let me talk to him ! Little Man, the smiles are NOT going to get you by in life alone !! You gotta eat little man !
I hope the test are scheduled quickly & you find out some piece of mind soon. Thinking about you all the time & not calling cause I don’t want to bother you - call me if you need me 
Gina
Eric and Tobie - Good luck with the nebulizer. Lacey has used one from the time she was about 8 months old (for asthma). She hated it at first but if we put Baby Einstein on tv while we did the treatment she did ok. You can also try it when Cole is sleeping (if he can sleep through the sound of it running) and you can hold it near his mouth and nose. Good luck! If you need extra masks/tubing for the machine, I found a drugstore that sells them.
As far as nipples - go up a couple stages. The higher the stage the bigger the hole in the nipple. Good luck!!
Cindy D.
So cute loved the videos!!!!
About the nipples for cereal, we also used the Dr. Browns nipples for Caitlin’s bottles , you have to sometimes tug on the nipple just a bit to make it a bit bigger not to hard though because then it will get to big. Also evenflo makes a X cut nipple its a stage 3 nothing special but that might work as well. We moved onto those because I was sick of having to keep tugging on the Y cut nipples from Dr.Browns. We do 1 tablespoon of rice cereal per 2 ounces of milk.
Melissa , mommie to Dillon and Caitlin
http://360.yahoo.com/meliciousca
Hi… new to your blog. Three things Hello and may I say you have a wonderful looking family, congrats. #2 When my twins were younger and needed the thinker cereral type feed I got these bottles from Babies R Us that were made for cereral feeding. Good luck with that. #3 My son has asthma and has been doing breathing treatments since he was 6mo old at home. When he was younger I could do them at night and he would just sleep the noise didn;t bug him at all. When he was awake I would use the Baby E videos (otherwise known as baby crack in this house) Its amazing how they zone when its on. Now that he is older he just sits and hold his mask cute yet sad all at the same time.
Ellie
Hey guys,
Well, about the food thing.Have you tryed poking a bigger hole in the nipple. I would before you go out and invest in more. That’s what we did and it worked great. I don’t think that’s against any rules. As for the “babies looking great” we think they are looking better then great. Love the faces Cole makes all the time. He might be the next Eric…Trouble!!!!!:) Anyway, you hang in there and keep pluggin along. It will only get easier, I love the fact that Lane is now able to feed himself. Big Difference!!!! We are thinking about you guys, good luck.
Shal, Ryan and Lane