Tuesday, December 30, 2008

Good weigh-in

Jaxon weighed in today at 10lbs, 13.5oz. He's gaining so nicely on the feeding pump. The nurse told me that its a good possibility that Jax will be on his feeding tube until the day he takes solids. Think she's trying to prepare me after I told her about our bottle practice this last weekend. She said to always keep hope, but to not be too disapointed if it doesn't happen in the next few months. The important thing is his growth and health. Still stinks to have a baby on a tube tho.
The next weight check won't be for 2 more weeks and we'll weigh Brady too.

Monday, December 29, 2008

Not ready

Jaxon has made it VERY clear he is not ready for bottles in his mouth, or large volumes of food in his tummy. He gagged/heaved/puked every single time we tried putting a bottle in his mouth. I had his food pump turned off for over 3 hours when we tried, so when he wouldn't take the bottle I had to make up for all that lost food. He couldn't handle having 1.5 oz of food put into his belly over an hour....wow. I think he's in the throws of his reflux peek over the next month here...so we're going to have to be patient and keep him on his feeding tube. We'll keep trying to get a pacifier in his mouth in the mean time.

Brady slept 5 hours with both arms out last night. I thought this was great....dad did not. He wouldn't stop crying until brought into bed with us, and then cried non-stop again at 4:30am. Jay brought him downstairs and gave him a bottle, and as soon as the bottle was done...he continued to cry. Finally his swing and the TV made him calm down and finally snooze a bit. He then had a little reflux attack around 7am (sigh) I think it may be from being so upset.

Anytime after 3 or 4am in our house is insanity. That's called the "witching" hours for reflux babies, so I had my own pity party upstairs with Jax while Jay was dealing with Brady downstairs.

Sunday, December 28, 2008

Back to the Bottle

We are going to try practicing a bottle with Jax today. I've made a plan with the speech therapist of how we will time turning off the feeding pump and everything. I wish I had higher hopes for this, but its hard since Jax still heaves often. But I'm determined to start trying!
Yesterday we took Jax to the hospital for some blood work to check his electrolytes. We want to see if we can drop the Sodium Chloride from his medication list. So we're waiting to get the word on that. We've decided to stay off the Reglan. His mood has improved, and he's pretty much physically the same.
Brady is still up at night now. He's always slept a perfect 8-10 hrs through the night. We're thinking its time to wein from the swaddle, but we're having a hard time with it. He cries being in the swaddle, but wakes himself up all night if his arms are left out - any advice out there? I've been playing white noise for him (sound of rain) gently in the background, and only have on a small nightlight. His humidifier had a very bright blue light that lit up the whole room. I was wondering if it was too much light for him. I've heard that babies may sometimes go through sleepless nights for 2 weeks during growth spurts. Hmmm....what else to do?

Friday, December 26, 2008

Christmas 2008

Jax with Nana Jayne and Bumpa
Papa Letts and Brady
Nana Letts, Auntie Christa and Brady
Merry Christmas!

Tuesday, December 23, 2008

New weigh-in

The boys had their next round of RSV shots this morning with next official weigh-in.

Brady - 11lbs
Jaxon - 10lbs, 5 oz

Only an 11 oz difference!

Monday, December 22, 2008

G.I. follow up

Jaxon's follow-up G.I. appointment at Children's Hospital was good today. The doctor wants us to completely stop his medication REGLAN. He thinks it may be adding to his fussiness and irratability. We'll know in the next 3-4 days if that's the trick. He'll either vomit/heave more, or become a happy baby. The doctor thinks it's definitely worth a try. We didn't want him on that drug very long anyway, so we're more than happy to try it. The doctor doesn't think "gas" is making him so irratable since Jaxon poo's multiple times a day with this gentle formula he's on.

We're going to be using a cream on some skin that's growing next to his g-tube entry. They gave us the option to "burn" it off at the office today, or use this cream over the next two weeks. Apparently it's very common, but the body wants to close the hole up, so skin is starting to grow. Hopefully this cream works, so we don't have to cause Jax any discomfort with "burning" it off.

Jaxon's weigh-in at the office was awesome - 10lbs, 4oz! We'll see what he weighs tomorrow on the scale he's been using this whole time, and hopefully it's very close to the doctor's scale. The doctor said that Jax is in the 50% for his weight in comparison to his length. Ignoring all "ages", he only was concerned about his weight in reference to his length. So that's great! Both boys will be weighed at the house by our nurse (Stacey) for their RSV shots tomorrow. I think they're within a pound of eachother now because Jax is fitting into Brady's pajamas :)

We have the okay from the specialist and the dietician to work on bottle feeds again. We just have to make sure a certain amount of formula is administered every day, so we will work with his speech therapist on how to time turning off the feeding pump long enough to make Jax hungry to try a bottle, then making sure he makes up for that time off the pump. It will take a lot of work, but the day this baby gets his feeding tube out, will be the biggest celebration ever. The doctor still 100% believes Jax will grow out of this heaving and he'll be completely fine someday with eating by mouth. He said the more mature and upright Jax gets, the easier everything will be for him. We REALLY hope he's right.

Saturday, December 20, 2008

Pain in the neck...

So the boys have totally different shaped heads. Jaxon's occupational therapist said he has TORTICOLLIS. This is when the head tilts to one side and the face turns toward the opposite side. He can't turn his head completely right. It's thought to happen from the position of the child's neck before birth. If you notice...Jax always has his head tilted the same way in all his pictures. He was definitely "stuck" in my pelvis with his neck cranked while in utero. His head is still lopsided, but it seems to be getting better.
So we're working on a lot of different stretches which Jax hates! He's been a crabby little dude since we've started working on this. We need to strengthen his weak neck muscles on his right side. We'll continue his stretches and therapy and hope to see progress soon.

We tried to leave Brady's arms out of his swaddle last night at bedtime. Aaaand that didn't work. He kept waking himself up and crying for his pacifier. Finally I swaddled his arms back in and he slept fine the rest of the night then. We'll keep trying here and there and see how he does, but for now...he still needs to be swaddled. The ONLY way Jax can settle down or even nap is swaddled.  I swear these babies will be swaddled until they're 18!

Here are a few pics from some happy play time this morning:




Look how hard we concentrate on our hands!
Total hams

Thursday, December 18, 2008

kicking butt

Jaxon weighed into today at a whopping 9lbs, 14oz! We're predicting about a 1lb difference between the boys - wow!! Jaxon is really catching up. We're definitely sticking with the gentle formula for the next month.

Monday, December 15, 2008

Little by little...

New weigh-ins:

Jaxon - 9lbs, 6oz
Brady - 10lbs, 11oz

Thursday, December 11, 2008

Jax hitting his goal

Today Jax weighed in at 9lbs, 4oz. So he gained an ounce a day the past three days. He won't be re-weighed again until next Wednesday, unless any problems arise before then. His reflux attacks have calmed down quite a bit, but his heaving is still pretty aggressive.

Let's share photos from this morning:
(I wish the babies were this happy ALL the time!)






Brady being cute

Brady has had an increase in reflux attacks. We're hoping that an increase of his Prevacid prescription will help since it is based on weight and it hasn't been increased in quite awhile. It won't be increased for about 3 weeks, and insurance really doesn't cover it, so its one of those things that are bitter sweet.

Here he is!

Dad showing Brady the pouty lip to see if he would do it.
And he did!

Looking like his brother here!

Wednesday, December 10, 2008

We have LIFT OFF!

Last night Brady pushed himself up and stayed up for quite awhile! Too cute not to share. We celebrate all small victories here...


Jax is still working on it :)

Monday, December 8, 2008

9 pounder!

Jaxon seems to have turned a corner last night. We're not sure if he is just having a good day/night, or if the formula has started to help him. He slept pretty good last night and was pretty happy today. His heaves have cut down at least 50% over the last 24 hours.
He's gained more than his goal and weighed in today at a whopping 9lbs, 1oz! I gave the nurse a huge hug because I was so excited! We'll continue with his sensitive formula to see if this is the trick.
Let's celebrate with cute pictures :)
Hi Mr.9 pounder!

Brady is thrilled as you can see :)

Looking more and more alike each day...

Sorry...but Brady looks hilarious in this photo!

Don't worry Brady, I put a normal picture of you up too!

Sunday, December 7, 2008

Doesn't seem to be a food sensitivity...

Well Jaxon doesn't seem to be any better on the sensitive formula. Jay thinks he is up more during the night (almost every half hour). We'll keep trying this food for a few days to give it a good try, then call the dietician and G.I. specialist to see what they think.
On a positive note, Jaxon reached his weight gain goal this past week with 1oz/day. He weighed 8lbs, 10oz on Thursday and will be re-weighed on Monday. I think Jason and I are just getting used to the venting process to save Jaxon from losing his food. We can jump up in mid conversation without a blink of an eye these days!
I just pray that Jax really does "just grow out of this" and he (and us) can get some relief.
Other than that, the boys are developing more and more every day right before our eyes. Jax is starting to like to play and both of the boys are developing the cutest GIGGLE. We can't however get them to play on their bellies to work on pushing themselves up - they hate it!

Brady and his handsome self.

Oh Jax...you steal hearts!
(Notice we've learned how to keep his hand busy to keep it off his g-tube)


Jaxon is quite the flirt these days.

Wednesday, December 3, 2008

Try and see...again...

We've decided to try Neocate formula on Jaxon to see if that will alleviate some of his heaving/vomiting. We'd hate to find out in a couple of months that this would've helped. Neocate is an ultra gentle formula for babies with any food allergy or sensitivity. We tried this formula for a day and a half before his scope/surgery and at that time it didn't help. This time we're going to try it for 2 weeks and give it a good try. It's worth a try.
We're able to "catch" most of his heaves, but sometimes its impossible. We know nothing will make his reflux attacks go away, we're just hoping he does grow out of it (expected at 4 months adjusted to start to improve).
Jax has regressed on his bottle feeds. We practice a few times everyday, but he now drinks ZERO from the bottle. The speech therapist and dietician believe his constant vomiting and heaving is making him want nothing in his mouth. Even on an empty stomach he won't take anything from the bottle. Jason and I wake up to Jaxon's bed soaked with formula if his clamp on his feeding tube is closed. It leaks out thru a valve. So that's always fun to wake up to! We kick ourselves because when you get up every 30 mins to help him in the night, its easy to make mistakes like this.
I take that opportunity to try a bottle since we know he hasn't had any food for a couple hours. He still wants nothing to do with it. The therapist truly believes Jax will come around quickly once we alleviate his vomiting. Until then, we continue to try and at least give him his pacifier so he remains to practice the sucking motion. He won't take the pacifier sometimes until he's convinced it's not a bottle.
The G.I. specialist wants to try this gentle formula and if it doesn't help, he wants to try some special gas drops. We believe he has a gas problem since so much air comes out of his belly when we vent him to prevent the vomiting. So hopefully one of these next steps helps this poor little man. He is gaining weight slowly which is better than none, but we need it to speed up. He does get an added fatty calorie mix to his already increased calorie formula. We mix it all up to be 27 cals per serving. Brady gets 22. Last weigh-ins:
Brady - 10lbs, 2oz (Nov 26)
Jax - 8lbs, 7oz (Dec 1)
Comedy relief:
Brady holding his own bottle. I had to ditch him on the floor on a boppy while feeding him to tend to one of Jaxon's reflux attacks. I turned around and this is what Brady was doing! Survival of the fittest in our house!

Tuesday, December 2, 2008

Happy Thanksgiving

Our niece Marley and family were able to visit us this Thanksgiving since we can't leave the house. We can't wait for when she can actually hold the babies!

2008 is proving especially hard on our family. Jason lost his job last night. He saw this coming (with the economy and a sales position) so he's been looking for new work for quite awhile. He has an interview this week and still doing some mortgage work on the side. We're scrambling to figure out insurance, since we obviously have a lot of medical needs for Jaxon. We're hanging in there, but really looking forward to a fresh 2009. Please keep us all in your prayers.