Tuesday, December 30, 2008
Monday, December 29, 2008
Sunday, December 28, 2008
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
Tuesday, December 23, 2008
Monday, December 22, 2008
Saturday, December 20, 2008
Thursday, December 18, 2008
Monday, December 15, 2008
Thursday, December 11, 2008
Let's share photos from this morning:
(I wish the babies were this happy ALL the time!)
Here he is!
Wednesday, December 10, 2008
Monday, December 8, 2008
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 :)
Sunday, December 7, 2008
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!
(Notice we've learned how to keep his hand busy to keep it off his g-tube)
Wednesday, December 3, 2008
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)
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
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
Sunday, November 23, 2008
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
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.
Sunday, November 16, 2008
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
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.
The boys today
Sunday, November 9, 2008
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
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
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
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
Since we can't get professional pictures done yet, we do glamour shots at home!