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.


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.

Friday, October 31, 2008

Happy Halloween!

The boys had their first RSV shots today, with updated weights: Jax - 7lbs, 5oz and Brady - 8lbs, 14oz. The nurse said they just had growth spurts, and to not always expect such big leaps and bounds. She's very happy with their progress.
We got some cute pictures of them over the past day...notice Jax is losing his hair like his brother did last month.

They really look alike with hats on!
Jax the Jack-o-latern!
Happy Halloween!


Since we can't get professional pictures done yet, we do glamour shots at home!