Tuesday, November 25, 2008

Love them babies

Daily play time

Brady really gets into it

Jax likes to take breaks just to SMILE

Brady pouting as he was packed up to go get pictures taken

Jax looking like a big boy in his "picture clothes"
These pants are size 0-3 and I still had to wash them in hot water twice and safety pin them on! What a cutie pie. Jax has to wear pj's everyday because of his feeding tube, so this was a special day :)

Sunday, November 23, 2008

Oxygen only at night!

Jaxon had his pulmonary and G.I. check ups at the hospital all day on Friday. He passed his pulmonary test and only needs to use his oxygen at night while sleeping, or if he were to get sick. He will have a sleep study done in March to see if we can be done with the oxygen all together then.
His calories have been increased to 27 per serving, so that's something we're adding to his formula now. He seems to have increased the reflux/vomiting a bit again...but we're still keeping way more down than we used to by venting often. He is still on the continuous pump-feed, which gets increased 1ml an hour each week. We still practice with the bottle 3x a day, and some days are better than others. Jaxon works closely with a speech therapist now to make our goal of complete bottle-feeds within 3 months. The occupational therapist thinks he's doing great. We have activities to do with him now to help him develop quicker. We'll keep on working on all of this!
Both boys will receive their second round of RSV shots this Wednesday at the house. So we're all hanging in there and already dreaming about SPRING!
First professional pictures of the boys will be done on Monday....finally! Pray for SMILES!!

Tuesday, November 18, 2008

4 Month Check Up


The boys had their 4 month check ups on Monday with immunizations. The doctor is very happy with their progress. Brady's head and length is the 50% for his adjusted age, with his weight at 10%. Jaxon doesn't quite make her adjusted chart except for his head at 10%. Their growth scale is the most important and its looking great.
The in-home nurse stopped by today. Here are their current weights:

Jaxon: 8lbs, 1oz
Brady: 9lbs, 12oz

Jaxon officially went over 24 hrs without a vomit or reflux. We've learned the key to his success is lots and lots of venting. So mama gets up every 1-3hrs over night to vent and administer meds. This seems to be doing the trick! Jax is also taking a few practice bottles too. Since he's on the continuous pump for food, it's hard to make him hungry enough to eat much from the bottle, so he's just taking snack-bottles a few times a day. I just want him to remember how to feed from the bottle for now. I want to make a plan with his speech therapist on how to try more. Jax will begin occupational therapy this week as well.

The boys on their way to the doctor!

Sunday, November 16, 2008

G-Tube

Jaxon's EGD went well. They couldn't find any problems. They placed a G-tube into his belly. It's a bit scary looking right now. Apparently after 3 months the tube can be turned into a MIC key button. Our hopes are that the tube will be removed before the button is placed. The docs want his tube to stay in place for the next 3 months even if he does end up bottle-feeding every feed before then. They think a tube in place over the winter is a good idea in case he gets sick. He's on the feeding pump 24/7 right now, and we're starting to take breaks to try the bottle. He took it on the first try this morning (6 ml's), so we're hopeful. I want to give his throat a little break from being intebated Friday with the surgery.

Jax was able to come home Saturday. It was a bit of a circus at the house the first night, but I think it will get easier (HOPEFULLY) as we get used to it. Jax needs to be vented often....that seems to really help keep the vomiting/reflux from being so bad. Our hopes are that since the NG tube is out of his nose and throat, he'll bottle-feed easier and he'll have less gagging and less stomach acid traveling up his throat. We forgot to vent him after his reflux this morning and he ended up vomiting. So only one reflux and vomit so far since coming home. Neither were as bad as most that he's had.
Both boys have their 4 month physicals/immunizations tomorrow, and Jax will see the pulmonary and G.I. teams on Friday. We're hoping he'll pass the tests and get the oxygen off his face during the day hours.
So everyone cross your fingers for everything!

Tuesday, November 11, 2008

EGD scheduled

Jax continues to vomit and reflux....this just isn't right. He had two reflux attacks an hour after receiving his Prevacid and Reglan. One attack was so bad it pushed his NG tube right out.

The G.I. specialist team at Childrens Hosp plan to perform an EGD with biopsies on Jax this Friday. We have to have a pre-op physical tomorrow (Wednesday). He'll be staying at the hospital overnight Friday (length undertermined) since he'll be put completely under as a preemie. They're also going to change his formula again until then to Neocate.

I REALLY hope this gives us some answers. He'll either get an NJ tube or a G tube placed instead of his NG tube during this procedure on Friday.

I hope and pray this procedure gives us some answers, and poor Jax isn't poked/proded too much the next few days. Poor kid. Wish us luck.

(FYI: NJ tube goes down the nose directly into the intestines rather than stomach, G tube goes into stomach THRU the skin of his stomach)


The boys today
Classic Brady crushing Jax (I think this is what he did in my belly!)

Jaxon with all his tubes off for a brief moment...

Sunday, November 9, 2008

Pictures

I stick my tongue out to REFLUX!

Talk to the hand Dad!

Brady flirtin' with Jen

Hey! I'm Jax!

"Whaaa! I thought this shirt would bring me the girls!"
(Thanks for the shirt Auntie Sidney!)

YIKES

Soooo....the Alimentum is not a good fit for Jaxon. At least it doesn't seem so. We gave it to him for his overnight pump-feed. He was up vomiting and refluxing more than he EVER has. He was also blowing out his diapers with runny/smelly poo. It was just awful. He was so exhausted, that I finally just stopped the pump at 6am and he slept the next 3 hrs. We tried giving him a bottle since we knew his poor tummy had to be totally empty. He wanted nothing to do with it (but was sucking so hard on his pacifier). So I put a little in his tube, and he threw it up immediately.
We then made up some of his original preemie formula through his tube, and he's been sleeping since. I'm about to introduce his next bottle with the original formula to see if he takes it.
We hate to think we didn't give the new formula a good try, but it seems to be awful on him. It makes no sense that it would harder on him. Maybe it was a coincidence?? We don't get it.

Thursday, November 6, 2008

Try and see...

Jaxon was seen again by the G.I. specialist. We've changed his medication schedule back to the original plan, and changed his night-pump a little bit. The doctor also said we could use a little Mallox in his feeds for two weeks to see if it helps with the reflux pain. He wants to see if the medication schedule change helps over the weekend, and if not, we're going to try the formula "Alimentum". It's for protein sensitivity. The doctor doesn't think that formula is the answer since Jax digests his current preemie formula fine, but is willing to try it with the recommendation from the dietician. I guess the formula is 3x's the amount of our already expensive preemie formula...of course, right?!
Well, we'll see how Jax does over the next day or two. Does anyone out there have experience with this formula to help with vomitting/reflux? I personally think the tube down his throat is a big factor here.

Tuesday, November 4, 2008

Whew!

THANK GOD!!!
The weigh-in today went much better than I thought it would. Jaxon weighs 7lbs, 9oz and Brady weighs 9lbs, 4oz. I'm soooo happy with these weights. It means that Jax is still hitting his goal of 1oz/day. I guess that when Jax vomits now, it's never a whole bottle like what he used to do.
ALSO...he kept down every bottle yesterday afternoon. He continued his reflux and vomitting early this morning...so I'm starting to think it's a medication issue (he doesn't get any Reglan overnight). We have an appointment with the G.I. specialist again at Children's Hospital tomorrow afternoon.
Cross your fingers for us.

We hope you all got out there to vote today!

Monday, November 3, 2008

Not good over the weekend

Well....Jaxon has proceeded to vomit and reflux more and more over the weekend. He vomits pretty much at every feed again. I'm exhausted today after being up constantly with every little cough or heave I heard with him. I feel myself going back to that place right before Jax was put back into the hospital....that helpless feeling, and the feeling of being SCARED to feed him, and most of all...scared for his weigh-in.
ugh..
I put a voice message into the G.I. specialist's office last night, so I'm waiting for a call back today to see what our next steps should be.