Wednesday, April 29, 2009

Weights and teeth!

The boy's 9 month check up went well. Only one shot, so that was nice. Here are their stats:

Brady - 
Weight: 10% 9 month (YES, he made the actual age charts!!)
Length: 10-20% 7 month (Yes, he's short for his weight)
Head: 90% 7 month (can't remember what the doc said it was for the 9 month chart, but I think like 70th?)

Jax
Weight: 10% 7 month
Length: 10% 7 month
Head: 25% 7 month

The doctor is thrilled with their progress. Jaxon's proportion is right at 50% for his length/weight, while Brady's shows a short chubby baby which we love :)

In other news - Jaxon has a tooth!!! The doctor was able to see and feel his right front bottom tooth starting to poke through! We're so happy for him to get to do something first!
Otherwise Brady's virus seems to calming down. He had a nasty vomit after lunch yesterday, but has kept down solids today. We hoping Jax doesn't get this little bug.
Jaxon didn't have a good night of sleep last night, so nothing is consistent yet, and Brady had to be swaddled in his bouncy seat after crying until 9:30pm....so we're clearly working on the sleep thing. And now with a tooth trying to break out on Jax, I'm assuming 10 hrs of straight sleep won't grace us often!

I just got word that Jaxon's stomach emptying test showed everything to be absolutely normal (of course!), but his scan afterwards of his tube placement did show a part of the tube rubbing an area of his stomach. So they want to scope him for his motility test to make sure there aren't any ulcerations under it that may cause the random bleeding. I was also told that this motility test can't be performed through his existing tube and he'll have to be put under for it (also makes sense for the scope). Well, he'll be put under for the day of his MRI, and they're thinking of doing his motility the next day. Hmmm....I don't think he can/should be put under 2 days in a row! So our GI nurse is working her magic to see what we can work out. Those will be some long days coming up at the hospital...but we need some answers or at least some things to rule out!

Tuesday, April 28, 2009

Fevers and Interviews!

Brady had a fever yesterday, so I brought him into the pediatrician. His temp got up to 101.7 accompanied by a screaming fit, so I knew something was up. There were no signs of a bacterial infection, so he's believed to have a virus. Doc thinks he'll run a temperature for the next day or so which is fixed pretty good with Tylenol. His nose is a little junky, but really nothing too big. This morning his temperature is normal already. Seemed to be a 24 hr thing that Jax has fought off so far.

Jaxon's overnights have been going pretty good. He actually SLEPT THRU THE NIGHT Sunday night! He slept from 7pm-5am! And he was totally up at that point. Last night he was up only twice. This is SUCH an improvement to the every 30-60 mins we used to deal with. Now if we could time when Brady wakes once or twice to not be in between Jaxon's few wakings, we'd get even better sleep :)

In other news, I've been highlighted on the Multiples and More Blog site! They interviewed me as a MoM (Mother of Multiples) dealing with infant reflux (and a little mono pregnancy/preemies thrown in). Check out my 15 min's of fame: 

Sunday, April 26, 2009

Past weekend

We had a lot of family time together the past 3 days. Jason was able to finish up work early on Friday, so we all went together to the hospital for Jaxon's latest study - a gastric emptying study. He had 35ml's of formula put into his g-tube (his tummy) and had an MRI sort of machine take pictures of it. It measured out how quickly/slowly he's able to process food. We couldn't believe that he only threw up once over the entire hour process, and it was a very small amount, so the study was able to proceed. Jax actually ended up snoozing for the last 30 minutes. Jay was out in the hall on a business call, so the techs played with Brady in the next room while I sat with Jax. All the techs had a blast with Brady and I enjoyed watching Jaxon lay peacefully without pain...I could do that forever. I couldn't believe I was looking at him knowing he had food in his belly!
We've been treating Jaxon as if he has Gastroperesis this whole time. We're just looking for a formal diagnosis (insurance purposes) to prove our theory. We wouldn't be surprised if this showed he has it. It's common in babies with severe reflux - just means your tummy empties slow, so you have a lot of opportunity for reflux to attack. Only problem is...we've been treating him for this, so a positive diagnosis won't really give Jax any relief. We've tried the Botox injections in the stomach to help relax it and past drugs as well. The next two tests are the biggies that we have all our fingers and toes crossed that will be negative (the MRI and motility test).
After this study, we headed down to Radiology to have a scan done on Jaxon to check his tube placement and for any sores in his belly. He randomly has blood venting out of his tube, so we wanted to check for anything more than just the tube rubbing against his belly. Everything looked just fine.
After that scan, we headed to the chiropractor for some adjustments. Jaxon's torticollis seems to be much better again. So we'll just keep on keeping on I guess! He has good nights and bad nights of sleeping. There is no rhyme or reason yet, but overall they're better than what they used to be. I've ordered the next overnight pulse-ox study, so hopefully we can be done with these O2 tanks for good.
Speaking of sleeping...Brady slept thru the night (11hrs) on Friday night without his swaddle! I put him to bed each night without it and we see how long he can go. We're getting there. It's uncanny how they take turns each night. When one sleeps fantastic, the other has problems...so no relief for mom and dad!
The boys have their 9 month pediatrician appointment on Wednesday with their latest growth stats - that will be interesting!

Some pics:

It only took 8 months, but Yanni has sure warmed up to these boys!
He lets them pull and kick him as hard as they want and he seems to actually love it.
Jaxon was really giving it to him with stomping his feet on him and pulling his tail, 
while Brady pulled his ears and  fur on his back.
This is the result of Brady trying to hold his own bottle.
The boys at their first restaurant! Gotta love the highchairs that accomodate their carseats ~
Mitchell Domes in Milwaukee on Saturday. Christa, Clint and the kids stayed with us on their way home and this was something we found to do to get away from the rain!
(a rare family-of-four picture!)

Wednesday, April 22, 2009

Getting Out

Hi everyone ~ it feels like I've been away for weeks, when really it was only 2 days. Grandma Klingeisen had beautiful services, which hopefully can give peace to many people. She will be missed by SO many friends and family. Father Dick gave me a bouquet from her flowers that I will dry and put in the boys room in remembrance of her. A big thank you to Rachel and Krista (and Erin did a bedtime shift I hear!) for caring for the boys while we were gone.

Here are some updates on the boys:
Jaxon will be having a stomach emptying study done on Friday as well as having his tube placement checked. He has had some blood venting out of his g-tube since last night, and our thought is that his tube is rubbing against the lining of his stomach. I took pictures of the amount of blood in the diaper wrapped around his tube (with times noted) and pictures of his vomit (that had blood in it). I've been given the signs to watch for to bring him to the ER, but really it seems that the tube rubbing his stomach wrong may be the culprit. We'll have things checked thoroughly on Friday. He had occupation therapy today, and Miss Karen has suggested physical therapy for BOTH boys. Brady should be crawling at this point, and he seems perfectly capable, but he just doesn't "want to". He'd rather play on his back or stand!
So she is seeing about PT for both boys now.
Jaxon has his last (for real this time) RSV shot tomorrow. And both boys will see their new chiropractor late Friday afternoon. Whew...they are busy boys!
We're hoping the weather holds out on Saturday so we can all go to the zoo again.

Here are some pics from last weekend:

Boys getting ready for the zoo.
Their favorite animal - baby monkey!
They LOVED the zoo! And having their toes out!
(And apparently, 20 toes sticking out of a stroller is a zoo attraction in itself!)
Wiped them right out!
Auntie Christa Sunday morning with Brady.
Cousin Anesah with Jax!
All the kids together!

Friday, April 17, 2009

Grandma Klingeisen

Grandma Klingeisen passed away this evening. She fought a long fight. She is sadly missed and loved by many.



Tuesday, April 14, 2009

9 Months

9 Months


Jaxon laughing at his feet!
There's a pillow on your head Brady!

Happy 9 month birthday babies!

Today was a very crazy day. As I was getting Jaxon ready to go to his GI follow-up appointment, he pulled his tube out. So we had to go to radiology at the hospital to get it replaced. By the time we were able to get up to the GI clinic, we had to wait an hour after that to be seen. So Jax and I went and checked out the new part of the hospital and ate some lunch. Childrens Hospital's new addition is beautiful by the way.
Jaxon's GI appointment went pretty much how I expected it to. Our regular GI doc still thinks this may possibly be a NASTY case of reflux (and we've all got our fingers crossed that it is). Although he does suspect some kind of stomach emptying issue. He said that if it turns out to be reflux, that Jaxon will be the most severe case on the books at Childrens Hosp...you know how my kids like to beat all odds, so maybe that's a good sign.

We won't be having the next GI appointment for 6 weeks, and in the meantime Jax will have his MRI and motility test done. So I would say that by the next GI appointment we'll have some answers and/or the vomiting may prove to be reflux by diminishing some. We'll see. We can't deny the fact that the nights are better, with just the awful "wee-hours".

Jax will start up Erythromycin at night for the next few weeks to see if that helps his reflux during the wee-hours. Yes...we tried this antibiotic in the hospital, but the doc wants him to try it longer than a week. Apparently a very low dose of this helps stomach motility. Since he had no side effects, we'll give it a try since we have no other options than to "wait and see".
We'll also be trying to close his g-port a bit more to let his stomach stretch...if you remember, we currently leave his g-tube open and vented into a diaper wrapped around it to keep his stomach as empty as possible (and supplementing his formula with pedialyte to make up for it).

OH! Jax threw up a bit in front of the specialist...wow...it's about time! Now of course I hate it when he throws up, but if you're gonna do it...do it in front of the doctor so I don't sound like I'm over exaggerating!

He's had a pretty pukey past two days, so I kinda thought that if he was going to ever do it, today would be the day. He actually had a lot of bloody pukes today because of his tube coming out....yuck. I had lots of towels/bibs to wash today.

Jaxon's current stats: 16lbs, 1oz and 25" (such a shorty pants) We'll know both of the boy's stats in two weeks for their next big check up at the pediatrician with growth chart percentages and everything. GI doc said his weight gain is more than expected, so we're fine on that front...I just need to stretch him out :) The growth chart percentages will be interesting since the boy's weights have pulled apart probably about 2lbs... we'll see!

Oh yeah...we're trying to break Brady of the swaddle since he kinda turns himself over being inclined in the crib, and hello...he's 9 months old. Even by his adjusted age of 7 months...come on buddy. So I put him in a wearable blanket aaaaand that was not good. He cried and cried and cried. So I put him in the bouncy seat and he was cool with that. So I thought...ok, we'll wean him of the swaddle by using the wearable blanket in the bouncy and moving to the crib in the next few days. NOT the case tonight. Talk about crying and throwing himself around! Jason ended up swaddling him IN the bouncy, since I'm a wreck with him swaddled in the crib in case he flips himself over. I know the doc said do whatever you can to get him (and yourselves) to sleep safe during this survival mode. So I guess that's what we're doing. (sigh...) I wonder when our "survival mode" is supposed to be over. And I wonder if Brady really will be swaddled until he's 18!

Monday, April 13, 2009

Happy First Easter!

The boys had a nice Easter weekend. They got to see both sets of grandparents, so they were lucky little men for sure! We went on a few short walks around the neighborhood, still a bit chilly, but they LOVE looking at all the trees and houses which is a nice change from our living room floor I'm sure!!

Here are some pics from Easter:

The boys in their Easter outfits, that looked all pressed on the hangers.
(Aaron and Shaya gave the boys these outfits when they were in the NICU
9 months later they fit!)
I wish you could see their belts, seriously little man-belts are TOO cute!
CUTE Easter bibs from Auntie Sidney!
Jaxon starting a fight as usual!
Nana Jayne tried telling Jax it wasn't nice!
Bumpa Les telling Jaxon about the fishing trip they'll be taking in a few years.
Nana Jayne and Mama's attempt to get a picture with my babies - they were more interested in Great Grandma off to the side!
Brady excited about his Easter basket from Nana Jayne and Bumpa.
Jaxon too!

Saturday, April 11, 2009

Opening Day

Not too much to report. The boys still have their colds (ugh) but are sleeping pretty decent. We haven't gotten another 7 hours straight, but it's still considerably better than lets say a month ago, so we'll take it. Both boys are still having troubles with congestion while trying to sleep. Tomorrow will be two full weeks of a cold for Jax...is it fine to continue waiting it out without calling the pediatrician if the mucus is still clear? Let me know what you think.

Jaxon was beating up Brady today while they were playing on the floor. We moved our couch back against the wall to make more floor room for the boys, and they love it. But Jax went overboard and started pulling Brady's hair and making him cry.

Jason's back is a lot better. He's going to be seeing the chiropractor with Jax to try and heal the problem so he doesn't throw his back out chronically. Hopefully it helps.
We were able to attend the Brewer's Home Opener yesterday - thanks to Krista, Jenn, Shannon and Tara all adding to the care of the boys for the afternoon. It was nice to get out of the house, even if it meant leaving the game early to get the boys in bed and listening to the winning score on the radio! Ce la vie!

Pictures from the week:

Papa Letts and Brady.
The boys were singing Thursday.
Krista visited Wednesday.

OPENING DAY PICS:

The boys in their outfits I gave Daddy for Father's Day last year.
(There's a picture back in this blog of him holding them up in my hospital room)
Tailgating...ask Jason how these scratches got on the truck!
Miller Park just before game time.
Rachel and I.
Jason and Dennis.

Thursday, April 9, 2009

7 straight hours

Are you kidding me?? Jason and I got 7 straight hours of sleep last night!

Jaxon slept from 6:30pm - 4:15 am without one heave or crying fit. When he woke up whining I couldn't believe the clock said 4:15! I calmed him down and administered his medication (Zofran - anti-nausea medication) and got back in bed. Jason asked if he missed hearing up before that, and I was so NO, this is the first time he's up!
He woke back up off and on every 20 minutes or so fighting his congestion and started getting pukey. His brother woke up soon after and we were all up shortly after 5am, but I gotta tell you...sleeping that many straight hours leaves you in a pretty good mood at 5am!

I'm very interested to see how Jax does when this cold is over. Why do baby-colds last so freaking long anyway??? This is day 10, and while it's "better", it's still present. Jax is going back for his 5th chiropractor appointment this morning. He's doing well with the "spoon-therapy" and accepting a few drops of water 3x's a day. Vomiting is still present, but I need to start marking down/counting them to see if they've decreased....hmmm...

Trying to stay positive here!
*If Lisa Eisner is reading this...(hi Lisa!) could you email me? I realized the other day I don't have your email!!! thelettenbergers@mac.com

Wednesday, April 8, 2009

"Here comes the spoon!"

Jaxon's first feeding clinic evaluation went very well. I was so nervous that they were going to put a bottle in his mouth resulting in him getting violently sick. Not the case at all. I LOVED the director, which was the only person we saw. She of course fell in love with Jax, who of course flirted the whole time...these boys...

She read all his medical reports and was very prepared. She listened to everything I said and wrote it ALL down. She asked if I was able to "touch" Jaxon's face. I squeezed his cheeks and asked, "like this"? She laughed and said she could cross that whole learning technique off. She then asked if I could touch his lips. I laughed and said I put chap stick on it every few hours (he has blistered lips from all the vomiting). She was trying to figure out where we needed to start. I felt so proud of Jax that we could jump ahead about a month's worth of therapy. And here I thought he was going to be one of the worse cases they've ever seen.

So after a long talk and showing her that Jax will chew on his own fingers, toys, bib etc, we figured out where to start with him. He will NOT eat until his vomiting is figured out. She wanted to make that clear to me. But in the meantime, she wants Jax to be very familiar with "how" to eat, so when the time comes, the process will be much faster and easier. She believes Jaxon's true anatomical age is about 5.5 months since he was born the size of a 28 week baby. She said she does have faith that he has very nasty reflux and that it will go away, all while giving me the disclaimer that she is not a GI doctor in any way, but it IS possible, and that these upcoming tests can be negative. She thinks Jax is very bright and didn't display any signs of neurological problems, but again, gave me the disclaimer that she can not in fact see into his brain. She said that if this IS just reflux, then it is in fact one of the worst cases they've seen, but Jax is not broken. It will just be a bit longer..I hope her optimism proves to be right!

She worked on an exercise with Jax and I, of which we'll be doing at home over the next 5 weeks until our next evaluation. She wants to see Jax at every GI appt, but since our next GI appt is next week, she wants to see him at his following one. Jax needs to get these processes down slowly but surely. She said once his vomiting has subsided, Jax should be very ready to do intense training. But until then, we're starting with a SPOON.

Our exercise is Jax sitting in his highchair and I work with him 3x's a day with a spoon and water. He actually took a few drops of water at the appointment..swallowed and everything!! Big cheers. The point of the exercise is for him to accept the spoon on his own terms and to know it's not a bad thing, nor is the moisture going into his mouth. I tested out the exercise with him with the director and by the 3rd time he tried heaving, so that ends it immediately. The whole exercise is only 5 minutes total (unless he gets sick).

I tried it by myself this morning, and I was excited that he accepted a few drops of water. I'm amazed since he vomits if he sucks on a wet washcloth in the tub or if I put saline in his nose! The doctor made it clear that those things surprise him and trigger a gag reflex. He has to be the one to control it.

 *If anyone out there going through this wants exact details of how we do this exercise, let me know and I can email you personally.

So we've started. It's such a small step, but at the same time, so nice for Jax to start having a spoon brought to his lips and understand it's not evil. Sadly...I'll probably never get to feed Jax a bottle. The doc said that by the time we get him healed and eating (and tube-free) he'll never be able to do a bottle (and will prob be too old for them at that point!). He'll need have things that don't induce vomiting easily, like pureed food.

So that's that. A long road, that I'm soo happy to start. Let's just hope this is reflux, so that road can actually be conquered. And he weighed 15.8lbs and is still under 25" (SO short!!!)

Switching gears. Brady decided he was too cool to sleep last night. He enjoyed being up from 2am-4:30am. Of course Jax is sleeping better, but still falls apart between 4-5am because of the congestion making him gag. Soooo after 2am there was no way of sleeping for us. I'm so proud that Jax slept from 7-3, and then up randomly. I'm very excited to see how he does once this cold is over.


Some pics!

What do you think they're talking about?
Jax steals my heart in this photo.
Bleeker as Daddy and I so fondly think of Jax.
Brady's new found love of balls (and pulling the cat's hair)
This morning they were kinda talking to eachother...I thought it was too cute.
Some crazy toy I brought out that was in our basement since 
I was pregnant - anything new is a big hit!

Monday, April 6, 2009

Feeding clinic evaluation

Quick note - I got a call from the hospital today that we can have a cancellation spot for an evaluation in the Feeding Clinic tomorrow. The nurse told me to make sure I don't feed Jax 3 hrs prior to the appointment so he's hungry. I paused and told her that's impossible....Jax doesn't get hungry. She seemed a little taken back, but you've got to think they've seen this before, right? I hope...
I'm waiting for a call back in the morning to see if I need to turn his pump off prior to going. So this means they're going to put a bottle in his mouth...I better pack a lot of rags!! I think this evaluation is to see how severe his oral aversion is and what kind of therapies at what rate are needed.
At least I feel like we're TRYING to fix him. I mean...in one week he sees a chiropractor twice, his occupational therapist and this feeding clinic, not including his GI/Pulmonary/home nurse visits. I just hope he's on his way to recovery. I'll let you all know what they say at this evaluation. Cross your fingers!

On the mend

Jason and Jax went to the chiropractor today. Jax had his usual adjustments, and Jason found out that his MRI showed a bulging disk and un-alignment. So he will be continuing chiropractic treatment. He's been able to start picking up a baby here and there now.

Jax is sleeping a bit better at night, but he really falls apart around 4-5am with his congestion. Hopefully when this cold is gone, he'll (and we'll) have some relief. He has occupational therapy on Wednesday and another chiropractor appointment on Thursday.

Brady's cold is still going strong, but then again he contracted it from Jax, so I don't see it going away until Jax's is gone. He has a little cough that we're watching VERY closely since he didn't get the RSV shot this past month. He's sleeping in his bouncy seat for some relief from his congestion. He's sleeping pretty good until his congestion proves to be too much, which has been about 5:30am the last few mornings. He makes up for it with a little longer naps.

Mama herself is just plain old exhuasted. I have nothing else to report about that!

Here are some photos of the boys after their baths last night (getting ready for bed) in all their wet curly haired glory. I thought it was amazing that they are almost always looking at or doing the same thing when they're together.





Daddy walked in the room.

Friday, April 3, 2009

Could we BE any more medical??

Jason's back is still a hot mess. He could barely get himself in and out of bed, and felt awful hearing me up with the babies all night. He's getting an MRI done this evening. Looks like he'll be seeing the chiropractor with Jax for awhile!

We took Brady to the pediatrician today to have his ears checked since he's been up screaming through the night while congested. Last night I got some peace from him after sticking him in a bouncy seat. That made me realize that he's either very bothered by the congestion while laying down, or an ear infection. Well...he's bothered by the congestion. His ears looked great, although his dry skin on his belly is requiring some steroid cream, so we ended up walking out with a prescription after all.

Jaxon had a good appointment with Pulmonary today. Even with a nasty stuffy nose, his O2 levels were measuring great at the office. They think he sounds really great. When his cold is over, we're ordering another overnight pulse ox study to see if we can be done with the oxygen tanks forever. The specialist seemed very optimistic and said she thinks Jax will be graduating from the Pulmonary program after this next test. That would be SO nice...I will light a few candles the day these tanks leave!! I will post when the test is and ask for LOTS of good breathing vibes from everyone. 

Now if we could just get Jax to graduate from the GI program...could you imagine? His next follow up for that is April 14. I'm anxious to see how he does once this nasty cold is over. It's hard to tell if he's getting better until then, since congestion causes night-waking and vomiting in reflux patients...yes...I'm still holding out that this is nasty reflux and it will "go away". I have the GI nurse working for me on the inside :) She's bent the ear for speech therapy, the feeding program, and also the nurse who schedules the motility testing. We'd love to get into any of these things sooner rather than later since a little boy is suffering in the meantime. 

On a lighter note...we have the BIGGEST flirts for sons. Each boy stole the hearts of their doctors today. Big smiles, giggles and lots of little "roars" from Jax. He roars ever since his first appt with the chiropractor. He's starting to find his voice finally, and it's a baby lion ROAR... :)

Thursday, April 2, 2009

Calgon take me away...

Well...our house is just insane. Brady got Jaxon's cold and is taking it like a wimp in comparison. He's up EVERY 30 minutes to an hour at night non-stop, not really eating much and is overall very crabby. I caught the cold myself because I need a cold like a hole in my head.
Jason came home from his work trip thankfully so I can have SOME relief and hopefully some sleep...not the case of course. Jason took Jaxon for the night and I took Brady...well that's when Brady decided he wanted to be awake non-stop and I guess Jax slept straight through until 3am. Do these kids think they're funny? Thankfully Rachel was here overnight to intervene with Brady before I had a complete sleep deprivation meltdown.

Now... Jason threw his back out this morning at work. Seriously?
So here I am driving Jason and Jaxon to the chiropractor while talking to the pediatric nurse about Brady on the phone. All my men have issues right now - no relief for the mama!

Jason had some electrodes put on him for a bit at the chiropractor and told to ice all day, and get an MRI done to see what the problem is. He is really hurting and can barely walk. The nurse told me that if Brady is up again tonight like he was, he needs to go in tomorrow. Jaxon seems to be doing better with his cold and sleeping a bit better. His posture is coming along nicely. He has an appointment at Children's Hospital tomorrow for Pulmonary. We may be juggling an MRI for Jason, a pediatrician stop for Brady, and the specialist appointment for Jax

The chiropractor is very interested to see what Jaxon's vomiting does once he's done with the cold and a few more sessions. He seems very optimistic about it...hey, I'll take it.

These are some long, challenging days.