Hellobee Boards

FYI. We had all of the same feeding issues you ladies are having (including ot), but things have been great for a long time now...to give you hope.

Here's a very brief summary of what worked for us.
1) meltable foods. D didn't really like/know what to do with purées. One pouch would last us days. When he was able to "chew" really soft foods, it kinda clicked what food is.
2) he couldn't use a straw properly for well over a year old. We had therapy straw cups and everything (little bears...if you want one let me know), but they didn't work either. We ended up using the take and toss sippys because the flow is faster. Some of the sippys out there you have to suck really hard and then d wouldn't drink anything. I don't think we even tried sippys until a year adj.

There's more, but those are the basics.

The cast was initially on for three weeks, then they put a new one on for two more. So a week now...

We're actually doing really good over here! E is 6 months old/3 months adjusted. We went to a clinic for babies who were born under 1000 grams. They said he is in the 90th percentile developmentally for his adjusted age of 3 months, and is hitting milestones like a 4 month old! He was in the 10th percentile for a 6 month old. They said it was amazing that he was even on the charts. He is really tiny. He's only in the 3rd percentile for weigh for a 3 month old at 11 lbs.

To recap, when Elliot was in the NICU, he got sick at about 10 weeks old. His liver enzymes were elevated and he was very jaundice. He saw a GI doctor who said that it was either due to getting IV nutrition which damaged his liver which he would grow out of, or it was something called galactosemia. Galactosemia is when a person doesn't have the enzymes to break down galactose which is then broken down into lactose and glucose. It means the person can't have anything with lactose in it which included my breast milk. It is much much more serious than simply lactose intolerance. The lactose can build up in the liver and brain and actually cause death. There is a blood test for galactosemia, but Elliot wasn't able to do it because he had received blood transfusions. They told us we would have to wait 3 months after his last blood transfusion to do the testing and during that time he would have to be taken off my breast milk and put on soy formula due to the serious nature of the disease. It wasn't worth risking him being on my milk in case it was galactosemia. After 3 long months of wondering, we had the testing done finally on Dec 22nd and we just found out that Elliot does NOT have galactosemia! We are so so excited! So, after not breastfeeding for 3.5 months I have decided to relactate. So, I'm pumping, putting E to the breast and taking domperidone. I'm actually starting to make some milk! I'm only getting about 5 mL when I pump, but I think E is getting a little more. I've only been on the dom for less than a week, and I went from making nothing but drops to the 5mL, so I'm hoping this works. Luckily, I have a freezer stash of about 1500 oz from when I was pumping for him while he was in the NICU. So he is getting some breast milk. DH and Inhave been sick with a cold, and somehow Elliot didn't get sick at all! I think him getting some breast milk really helped. But it's good to know his immune system isn't terrible!

@Mrs.ThinMint: fantastic news!

@littleredhairedgrl: Wow! Congrats on the new baby! Glad A is doing so well. And I really love when I see this thread pop up.

D is 2 1/2 and doing amazing. He's talking in full sentences, pretending, making jokes. It's an amazing stage. He's not jumping yet which we are working on, but otherwise gross and fine motor seem pretty strong.

Now that he's older, it's really weird to have so few doctor's appointments! Our next one isn't until he's 3! So I don't really know how much he weighs, but I think it's a little under 24 lbs, so still very small, but he's eating tons of different foods so I'm not too worried.

We did the March of Dimes Walk for Babies this year. It was fun!

@littleredhairedgrl: Congrats on the new little guy to come!! I am happy to see that A is doing well!

@Mrs Green Grass: It is great to see that D is talking in full sentences!! My doctor says as long as they are gaining (even slowly) that they are fine.

E is going to 16 months ((actual)14.75 months adjusted) on Thursday! He is a climbing fool! Gross motor he is doing wonderfully! Fine motor he still is tracking within normal limits. Speech and eating are huge HUGE hurdle for us right now. He is also struggling with some pretty intense iron issues right now. He has just recently started sleeping through the night! He is going to evaluated next week for speech services. I am hoping we can get a referral for feeding therapy soon. I think it all has to do with low tone in his jaw and tongue. Also lately he has been gagging and choking on thin liquids. It looks to me like aspiration but without a swallow study we can't tell for sure. The doctor keeps saying we start with speech and go from there. So for now I just keep on nursing in every 3 hours during the day and work on thicker liquids with him.

@Mrs Green Grass: we have OT services now for feeding but it's just not really cutting it. He is stuck on a plateau for lack of better way to put it. Our OT lady suggested more intensive feeding therapy. The doctor seems to think that it equals speech therapy. I am not thinking along the same lines as the doctor. Which sucks because otherwise I love her. I am hoping that when we move that the Eval and new doctor will get us somewhere.