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!

Thursday, October 30, 2008

smiles





Good night

After baths last night, Jaxon and I spent about a half hour with the bottle and lots of long burping sessions and he took the most he's ever taken! He drank 36 out of 45 ml's! And then he slept until 5am!!! (Put him in bed around 9:15, he fell asleep within a half hour) He had very few little sleeping fusses, so I was actually able to sleep longer than 2 hrs straight for the first time since he's been home. He kept down the entire bottle that he drank too while in bed hooked up to the feeding pump. I take showers at night, so I made Jason sit right next to Jax after the bottle because I was so nervous he'd throw it up. But he did so good. I'm about to change him and get him off his pump and am nervous for one of his morning reflux attacks. Wish us luck!

Wednesday, October 29, 2008

Home Alone...

What an interesting day...
My first day completely alone with the boys since Jax has come home again and I SWEAR we'd make millions if we were on a reality show!
The medical company decided to come by at 7:30am to fill the oxygen tank..of course waking up the babies with the door bell.
Then while changing Jaxon's diaper while he was finishing his pump feed, he had a reflux attack. His cry woke Brady up again, to which led Brady into a screaming fit. Jaxon's canula tape came off, so I was trying to cut a new piece of tape while holding him, and realized the cuticle scissors were cutting it wrong. So I decided to rip the tape resulting in me stabbing myself in the knee. LITERALLY stabbed myself. So here I am holding a screaming baby, bleeding everywhere with a hole in my pants and Brady swaddled in his bouncy seat screaming. I was in so much pain...I quickly put a band-aid on and went on with my morning. 
I finally get the boys down stairs and have them each happy (Jax on his boppy pillow and Brady in the swing). While I'm making their bottles, I can hear Jaxon's "reflux cry". So I rush to help him and there it is....his NG tube and canula laying on the couch. Damn...
I texted Jason to see if he could take lunch early to help me get Jaxon's feeding tube back in, and he seemed very busy. So I went for it myself. Here's me holding Jaxon down trying to insert a tube into his stomach, while my knee decides to start soaking blood through my pants, and Brady has decided that TODAY he does not want to take his morning nap and screaming bloody murder.
I got the tube inserted and taped, as well as the canula. Both babies got changed, fed and put down for a nap. By about 1pm I sat down and thought, "wow....now THAT was a morning".
I should ask the in-home nurse if she can give me a tetnus shot when she gives the boy's their RSV shots on Friday :)

Tuesday, October 28, 2008

Fingers crossed

Jaxon has been having reflux attacks and vomitting more since the weekend. I called the pediatrician and was directed to work with the G.I. specialists at Childrens Hosp. So Jax and I had a long day at the hospital today to see the G.I. specialist. The docs decided to increase his medications (due to his rapid weight gain) and change the way they're administered (i.e; always 15 mins before each feed) and to also only increase the volume on his feeding pump at night and not the volume of his daytime bottles. I also had them draw some blood to check his sodium levels. I should have those results tomorrow. He will also be seen by G.I. for a follow up in November along with Pulmonary and his 4-month pediatrician check-up.

Jax is doing really well otherwise. His weigh-in today has shocked everybody and he's more than exceeded the goals. He weighs 7lbs, 4oz! We weighed Brady too, but he had his clothes and diaper on - 9lbs, 3oz. So Jax is definitely narrowing the difference with less than 2lbs now. He is also officially on the growth charts too. He is in the 3% of his height/weight for his adjusted age of 1.5 months. The doctor said he made an amazing leap these past two weeks.
Let's hope he's able to keep the reflux and vomitting from becomming a problem again.
Here are their current schedules:

Brady

MORNING:

.3 ml Iron once in bottle (Enfamil Fer-In-Sol)

AFTERNOON:

1 ml Reflux (Lansoprazole in the fridge)

------------------------------------------------------------------------------------------------------------

Jax

8am: .1 ml Iron (Ferrous Sulfate)

1.12 Sodium Chloride

8:30 – 9:30 am: (pump ends)

11:30 am: .3 ml Reglan (Metoclopramide)

11:45 - NOON: Feed (Bottle/NG tube)

2:30 pm: .3 ml Reglan (Metoclopramide)

  2 ml Prevacid (Lansoprazole in the fridge)

3:00 pm: Feed (Bottle/NG tube)

5:30 pm: .3 ml Reglan (Metoclopramide)

6:00 pm: Feed (Bottle/NG tube)

8:00 – 8:15 pm: (must be completely ready for bed at this point)

.25 ml Reglan (Metoclopramide)

1.12 ml Sodium Chloride

8:30 – 9:00 pm: Introduce a bottle and Start feeding pump

Mommy and Brady taking a break.
The result of a 20 minute process of packing up a baby.

Sunday, October 26, 2008

One week home


Today marks one full week that Jaxon has been home. He's been doing well. He's thrown up a few times this morning, but we're hoping it's isolated and not a sign of it starting back up. We do know that babies do throw up and spit up once in awhile, so we're causiously going thru the rest of our day.
We'd like to send out a CONGRATULATIONS to Jason's cousins - Vicki and Travis Tank who had their twins on Oct.12. They had a little boy and girl born at 33 weeks. Last report was that the family is doing well and living a NICU life right now. Good luck and lots of love to them!
And Happy first wedding anniversary to Scott and Sidney!
Some fun pics at everyone's request!
The boys watching college football with dad.
Brady is a HAM!
Nana Letts and smiley little Jax.
The boys just hanging out.



Thursday, October 23, 2008

Thursday

Jaxon's weight this morning was 6lbs, 13.5oz...so he's gaining at home! He's sooo close to about an ounce a day. He met with a feeding therapist today at the house. The specialist observed me bottle/tube feed Jax. His recommendation was to add one more bottle feed to our day since he's keeping his food down. So we'll start his pump-feed a little later in the evening and give him a bottle at 9pm. He took the most from his bottle today than he ever has - 28ml out of 40ml. Starting Sunday, we'll be adding 5ml's to each feeding.
Jax has a pediatrician appt tomorrow and will be seeing g.i. at Children's Hospital in less than 2 weeks. We'll see what they think about stopping the Reglan medication at that time.
Brady is his handsome little self causing trouble as much as he can :)

Tummy time this morning.
~ The boys together ~
Jax finally looks similar in size to Brady...at least in photos now!
Jax never seems to be the biggest fan of Brady
Too cute!

Tuesday, October 21, 2008

Life at Home

Jaxon has been home since Sunday night. We are happy to report he has NOT thrown up (knock on wood) at all so far. He's tried a few times, but nothing has actually come up. His overnight pump-feeds are working well, and he's taking about half his day-time bottles by mouth. He weighed 6lbs, 11.5oz on Monday when the nurse visited. He'll see the nurse again on Thursday here at home, and the pediatrician on Friday. He'll re-visit the g.i. and pulmonary specialists the 3rd week of November. We'll see if we can wein him off the Reglan and O2 at that time (a.k.a. nightime O2 only).
The hospitalization has really helped him. Our family can function a little easier now. I say this right after the babies had meltdowns this evening and Jason almost pulled his hair out :) Auntie Rachel has really helped by being our nanny. She's been working out of our house so she can deal with Brady while I'm caring for Jax. I'm actually finding the time to have quality time with each baby now compared to the first time Jax was home. Life is still crazy in the house...but a different crazy this time around.

This is what I came downstairs to on Sunday.
Jason was discussing the game of football to his son.

Jay and Brady were having a good time on the couch wearing their Steelers gear.
(For the record, I had a Packers sweatshirt on!)
Jaxon working on his neck muscles today - he's a real baby!
Auntie Rachel tried to get a shot of them together today...but they wanted to wiggle!!
Jaxon's oxygen tank that sits centerally in the house.

Friday, October 17, 2008

Coming home on oxygen

Jaxon will be coming home on Sunday as long as things remain how they are now. He's keeping his food down and gaining weight nicely. He's narrowing the gap of his and his brother's weight. Brady weighs 8.8lbs and Jax weighs 6.9lbs. Brady had 3.5lbs on him when Jax was re-admitted into the hospital...what a week will do!
He will remain on oxygen until SPRING. Yes...you read correctly. Hopefully at his 6-8 wk checkup with the respiratory team, they'll only have him on the oxygen at night while sleeping, but I was told to not get my hopes up (that's impossible). He doesn't need the oxygen to survive, he needs it so he doesn't have to work so hard at breathing...they say he'll grow faster with it. At least we know we can have it off him for baths and a few other things, and he'll be fine.
They are also very concerned about him over this winter with RSV season coming. His lungs could not handle a simple cold at this point. They think the extra boost of O2 will help keep him stronger. Jason and I couldn't tell you all how many lectures we've gotten over the past 3 months about RSV season and how we have to quarantine him as much as possible. "NO holiday parties this first year"....we guess we need to accept that now...sorry family....we're bummed, but it's best for the babies. We can't wait until spring and everything can start to feel normal.
I picked up Dr.Brown's bottles for him to try and he's doing FANTASTIC with them! He took 25 out of 40ml's all day for me today by mouth. I'm so excited to think we're REALLY on the road to become NG tube free. One less tube for that little guy would be so fantastic.
Tomorrow we'll be receiving his pump for his night feeds and a wedge/incline for him. We'll be training on how to use the pump and oxygen (no candles or fires in the house this winter!) and getting all his meds in order. We'll be cleaning and getting everything as ready as possible and bringing our little man home for good hopefully!

Wednesday, October 15, 2008

Back on oxygen

Long...long....long day at the hospital today. Jaxon has been put back on oxygen and threw up 3 times this morning. We think the vomitting was due to the sodium they are now putting in his formula. Typically babies throw up from this until they get used to it, but I'm told it's necessary. He didn't throw up anymore today, so we'll see how he does from here. The oxygen (which horrified me to walk in on) was put back on from the respitory team because of the overnight study they did on him. They are saying that he's working too hard to breath and it's burning calories and contributing to his feeding/vomitting problem. They are performing another study tonight with him on it. I'm told he'll most likely be coming home on oxygen (knife in my heart). When I walked in his room today I saw him on oxygen and was told he was throwing up again...that was it....no explanations. Wow...I finally had that breakdown. Through many hours of speaking to rounds of people, I finally got my explanations.
I've called for a meeting between all the different specialists to have a discussion for a care plan. I'm so overwhelmed with all the different hands in his care, that I really need everyone at one table. I heard they were considering another diuretic for him and I threw my hands up and am demanding this meeting. I'd love for him to not be on a diuretic, oxygen or the new drug Reglan...why oh why can't that just be??? More importantly...why was he released to us in this condition???
I've shed too many tears, and threatened more people than I care to admit today. I'm going to bed and going to pray tomorrow is happier for us.

Tuesday, October 14, 2008

3 Months Old!

Jaxon is doing really well. His kidneys are just fine. He had an x-ray of his chest and will have his breathing monitored overnight. He only uses the pump overnight. After I practiced bottle-feeding with him, we fed him via gravity through his NG tube for about 15 mins and he did just fine. We really think his diuretic really contributed to his vomitting. His sodium level finally got better at his last test, but his potassium is still a bit high - they will continue to monitor. His Reglan seems to be helping greatly. Jax now weighs 6lbs, 4oz - he's gained almost a pound!

Since I can't have professional photos of the boys done for their 3 month old birthdays today, I tried to snap a few of them together. Jaxon was not having it since he had just had his chest x-ray and wanted to sleep!

Brady trying to convince Jax to smile for the camera.
Jax then hit him in the face and made him cry...bully!!
Close-up of Jax getting his chubby cheeks.
Funny shot of Brady a few nights ago at home snoozing.

Monday, October 13, 2008

Update

Jaxon was seen by a kidney specialist and some g.i. specialists today. The kidney specialist thinks his low sodium levels are due to his diuretic and the vomitting. We're getting an ultrasound of his kidneys to check things out. The g.i. specialists didn't like how hard and fast Jax breaths so he'll be seen by respiratory. He's always breathed like that, and everytime we asked, they said it was okay. The g.i. specialists think that his heavy/fast breathing is contributing to his feeding problem. We'll see what everyone says...

Sodium Level Low

I received a call from the hospital today that Jaxon's sodium levels are still low even after stopping the diuretic. So we now have to meet with a kidney specialist today. The doc that called me said they weren't "dangerously low", but low enough to need to find a reason. Wish us luck.

Sunday, October 12, 2008

End of Weekend

Jaxon looks good today. The medication seems to be helping him keep his food down, along with his food being administered via the pump. He takes 1oz over an hour every 2 hours, and then a continuous drip over night. We'll start practicing with the bottle tomorrow when speech therapy can see him. They also stopped administering him his diuretic, which is contributing to his sodium levels being off. We hope he can remain off the diuretic...we have a feeling that was contributing to his vomiting as well. His weigh-in today was 5lbs, 14.2oz, but that's not his "true" weight since he's full of iv fluid and has a big splint on his arm for the iv...but it definitely means he's gaining again!

Some cute shots of him in his crib this morning. We were playing with a stuffed animal and music...



This shot steals my heart...
Brady with Father Dick this morning - thank you for visiting us Great Uncle!!
Brady hanging out on Nana Letts in Jaxon's room yesterday.

To the person who posted this to me:
Anonymous anonymous said...

Oh I am so sorry to hear about your plight. I stumbled across your blog and was interested as I have triplets and my girls were momo, my other is a boy.

Are you worried he is going to die? I would be so out of sorts. But remember honey, if he does go on to the Great Lord, you have your other one. Isn't it such a cruel fate to force such painful medical treatment on him for you own reasons of wanting to keep him dear? 
Much blessings and remeber the Lord decides who to take, maybe just let him go.....


I would normally ignore these kinds of things, but in my current state of mind (and since we are talking about an innocent baby which whom I'm the voice for) I do not appreciate these kind of responses. I'm not sure what kind of "painful medical treatments" you think we are doing to my son...but rest assured, we are not torturing by administering fluids to a dehydrated baby. In fact, I believe letting him throw up continuously until he dies would be the "cruel fate". I also believe that if I were to "just let him go" I would be in prison for child neglect. I don't appreciate the insinuation that I'm putting my son through pain for my own selfish reasons. I'm shocked to read that you yourself are a parent, and offended that you use the Lord's name for such ridiculous statements. Please lose my web address.

Friday, October 10, 2008

quick update on jax

The night and morning nurses gave me some updates on Jax. He has still thrown up last night and this morning, and he's been placed on an IV. They will not be doing any bottle feeding for at least the next 24 hours. I asked if I could give him a bath today while I'm there (since he was due for one last night at home) and they said no. He's kinda on lock down and not allowed to burn any calories.
More to come...

Thursday, October 9, 2008

FTT...

That is an acronym that I wish I didn't know. 

"Failure To Thrive" due to extreme acid reflux and prematurity.

That is what the G.I. specialist at Children's Hospital wrote today which landed little Jax back into the hospital as an in-patient today. Jaxon had an ultrasound done and everything is normal. After a long exhausting day at the hospital with the specialists/dieticians/nurses, it was clear that Jaxon needs to be in the hospital right now. He is in a crucial developmental stage, and his current care plan at home was not allowing him to thrive.
The new care plan in the hospital is to adminster his formula from a pump (rather than hand feeding into the tube that gravity activates) that gives smaller doses throughout the day. He'll get bottle-training only during the four daytime feeds, and left to be fed only from the tube at night to help save calories. He has to be on his left side in his inclined bed, and he's starting a new medication called Reglan. This medication is supposed to help the stomach drain quicker, allowing food to pass faster hoping for less ability to throw up. The hospital wants to try this new plan and medication to help jump start him and focus only on his reflux/weight problem.
I felt like a zombie leaving the hospital with an empty stroller...
Please continue the love and prayers.

Thought I'd end this with some happy memories of the last few days I had with Jax at home:
His first bath at home
Brady trying to show him that the bath can be fun...

Tuesday, October 7, 2008

Update

Jax has been referred to a pediatric g.i. specialist at Children's Hospital. They are looking at appointments for next week. I've received many great tips/advice from all of you and I've written them all down. I'll be speaking with the pediatrician again tomorrow about the upcoming appointment as well as some of the advice from you all.
He seems to keep his food down decently well if he's laying belly down on my chest while I'm sitting up. So as long as I have a helper at the house for Brady, I can hold Jax like that for the 2.5 hrs he requires to keep the whole bottle down. I'm going to try sleeping on the couch with him so I can sit up with him in that position while I "try" to sleep and tube feed him slowly. His feeding process is now about 1.5 hrs long in order to get a bottle to stay down. He was weighed today by the home nurse at 5 lbs, 5 oz. He hasn't gained a single ounce, but he has maintained his weight at least. The nurse called Brady a "truck" and he weighed in at 8 lbs, 8 oz. She weighed him just for fun since he no longer gets in-home nursing assessments.
So far the doctors/specialists/nurses do not think Jax has a lactose intolerance or any allergy problems to his medications. If he had any of those things, he would have bloody/loose stools, and he would not "feel better" by a certain feeding position. He has classic severe reflux symptoms for a preemie of his size. He is on Lansoprazole (Prevacid) that helps a little with his reflux pain, and I think the g.i. specialist is looking into a medication for his vomitting. We will be able to rule many things out with the g.i. specialist. The only other medication he is on is a diuretic for his lungs.

Here's a few pics of the boys today (please ignore the vomit stains all over my sweatshirt!)





Sunday, October 5, 2008

"Just" reflux

Jaxon's upper G.I. and ultrasounds were both good. So his throwing up problem is strickly severe reflux. The specialist performing the upper g.i. told me that when he gets his NG tube out, he'll have less acid coming up into his throat. But that's a double edge sword since he has it in because it hurts him to eat, so he's not completely bottle feeding.
There has to be SOMETHING that we can do. The advice that he'll "grow out of it" is unacceptable. Since we've had him home, he hasn't gained a single ounce. He was weighed yesterday by a nurse at 5.5 lbs...he'll be 12 weeks old tomorrow!
I'm nervous he'll have to go back to the hospital if this remains. We can't even hold him often. Has anyone out there found something that helps this??!! 

Thursday, October 2, 2008

Quick Update

It's so nice to have the boys together. We wish things were a bit easier for little Jax. He's been throwing up pretty much with every feed. I had to bring him into the ER on Tuesday night to have a stomach X-Ray to make sure his NG tube wasn't coiled up. The X-Ray was good, so I've been trying to spread his feeds out a little longer. We had a feeling the constant intake of food was making his reflux worse. His throwing up is definitely out of control. We are getting an upper G.I. scan on him tomorrow, along with an ultrasound of his hips at the hospital. The Ped didn't like how his hips felt, so we're checking that out as well. I really hope we get some answers. It's so frustrating and awful to watch him wretch in pain and throw up all his food....the poor little man will never gain weight (sigh).
Thank goodness my mom has been here Wed and Thurs to help out! Auntie Rachel will be here on some other days to help as well - it's VERY needed!

Some cute pictures of the last 2 days that you're all requesting. I think you can click on the photo to enlarge if you want. Enjoy!

Jaxon in all his cuteness!
Nana playing with Jax.
Nana and the boys. 
(poor Jax has to stay inclined and vented on his tube)

The boys checking eachother out.
Nana and Brady.