Here we go week #3!

Time is flying by here at KKI. The weekends seem to drag on a little but once Monday hits we're off and running. Carsten's already eaten twice today and gotten speech therapy. They've increased his volume to 6 ounces now, whoa! So at lunch he ate 6 ounces of pureed food, had his first taste of cheeseburger with ketchup!!!! I think he liked it:) They've switched to liquid from a spoon now just during the 1 feeding session a day when they do drinks. He took every bite of liquid from the spoon which was great. It was probably around an ounce of liquid but they'll tell me this afternoon after they weigh it. The goal is to eventually transfer from the spoon to the cup. For some reason he's just afraid of the cup, frustrated, unsure, we're not sure? So exciting updates for sure. I'm very encouraged and I'm trying not to let myself on the usual roller coaster emotional ride but it's nice to see he can handle 6 ounces without puking. I'm so proud of my little c-man, he's such a trooper. That's it for now. I'll post some more cute pics later from the playroom. Oh, I made a list of all his signs he's starting to use and he's now doing "more" "all done" "eat" "brush teeth" "milk" "fish" "ball" and "shoes"! Yea, go Carsten, I'm such a proud momma!!!

My new haircut!

"I don't know about mom but I'm keeping a positive attitude with this whole KKI thing!"

KKI update

Today is the last day of our second week here at KKI.  They have increased his oral feeds to 5 1/2 ounces of pureed food a meal.  We are starting to notice an increase in vomiting since yesterday, he threw up at lunch and just now this morning.  It is very upsetting for me to watch and I feel so helpless to do anything.  There are so many variables and factors as to why he could be voming which is frustrating.  Please pray for the little guy that he would continue to tolerate volume increases and they could figure out why he's vomiting.  They made his first tube cut (giving him less formula through the tube) two days ago (which I was very excited about) but I know when he vomits he's got to be hungry during the day with no formula in his stomach so it's hard as a mommy to watch.  I'm trying to stay as positive as a can and I knew that when we came here we would have days like this but I'm a little down today, trying to stay hopeful, we still have 6 weeks to go so a lot of time for improvement and progress. 

Update on team meeting

We had the team meeting this morning with Chad on conference call.  Overall, positive, the main concern is Carsten's poor oral motor skills with drinking and textures.  They are going to push pureed volume as far as possible and make tube cuts as appropriate but the bottom line is he HAS to learn to DRINK to get as far as we'd like.  So, this will be the priority in OT and speech while the psychologist feeding him his meals will continue to push volume.  They just can't predict what his percentage of independence from the tube will be once we leave.  They mentioned 50-75% this morning but it's really up to Carsten.  We will be here the full 8 weeks and projected D/C date is Nov 14th?, somewhere around there.  I'm slowly becoming hospital delirious and forgetting days and times as usual.  I did get to go to Wal-Mart last night for a parent outing, let me tell you it was maybe the most exciting trip to Wal-Mart I've ever had:) 

Carsten is making lots of friends and really starting to pick up on some sign language.  He is signing "more" "all done" "brush teeth" very consistently now, for some reason "brush teeth" is his favorite thing to do, GO FIGURE!!

He's a trooper and we're proud of him and the sky is the limits for this little boy.  Please continue to pray for textures, drinking, tolerance of pureed volume, remaining well, my relationship with the women here.  Thanks!

Blessings,
Kari     

Week #2 - Riding the buggy to lunch!!

We're on week two now, I thought this program was going to seem like ages but I'm already feeling the time crunch as I know that time here is so precious, and EXPENSIVE!! Thank the Lord for Tricare!! I had a good conversation with the nurse practitioner this morning. She does rounds every morning and sees all the feeding kids. She said that their goal this week is to continue to increase volume with purees. Once Carsten gets to his max volume on purees and tolerates it okay they will add texture and liquid. Speech and OT are still working on the drinking and textures. Carsten took one good drink this morning from the open cup during his breakfast! Poor thing, he's just frustrated and doesn't know how to do it. But last night we worked on it and I think he has good potential, just needs repitition, repitition, repitition. But the nurse practitioner reassured me that they ARE working towards textures and that Carsten WILL have tube cuts by the time we leave, we just don't know the percentage or how much will be by texture or liquid. They have lots of neat little tricks to add calories like carnation instant breakfast in milk and adding lots of good fatty stuff like butter, whipping cream, whoa, wish I could be on that diet:) Then of course adding water to keep them hydrated. I'm just glad Carsten is eating more meats in his diet even if it's pureed such as chicken nuggets and pasta. But I'm trying not to be anxious and wait on their timing and expertise to bump him up to the next level. God is in control for sure.

I'm getting to know the moms better and I've really enjoyed just spending time with them. It's just kind of this ahhhhhhh you understand feeling. I wish I could take them home with me:)

I'm sure we'll get emails and stuff. So that's about it for now. The big team meeting is Thursday at 9:30 which I'm anxiously awaiting to see what they say as far as prognosis. Thank you for your continued prayers, they are invaluable!!

Toodles for now,

Kari

Update

We've approached our first weekend here at KKI. The weekends are going to be considerably slower here, yet he still gets his three meals a day with the feeding therapist. I got a pass and was able to go across the street to their workout facilities and get a good workout in and I feel so much better. It was so beautiful outside today, perfect fall weather, actually makes me miss the north quite a bit. I'm really hoping we end up in DC next year. I got some pictures of the front of Johns Hopkins Hospital, it is pretty neat to be at the same place where the movie Something the Lord Made was filmed. (If you haven't seen it it's such a good movie about the two men who pioneered the first cardiac surgeries here)

I've gotten to know a couple of the moms in the program better in the last week. The Lord is really opening my eyes and showing me that I'm not just here for Carsten but to support and love on them too. It's so nice to be around moms who just "understand" what it's like to have a kid with feeding problems and just be able to spend time with them. There is only 4 other kids in the inpatient feeding program and my roomate is scheduled to leave in the next two weeks so I'm sure someone else will be coming in. Carsten's meals are going well. He's up to 30 bites a meal with pureed food and they're working on open cup drinking once a day then separately with the therapist till he can learn the skills better. She said by Monday Carsten should be cleared to eat anything pureed, so far it's been chocolate pudding, applesauce, yogurt, and carrots. I'm anxious for them to move on to textures but I know I have to be patient and wait on the protocol but maybe by the end of next week he can move to a more junior consistency.

Please pray for the three other moms here and their situations, one has three other kids at home and a husband deploying in October, I can't even imagine! I hope I can be an encouragement to them and they would see God's joy in me. I will try to post some pictures later but gotta get ready for the Razorback game, GO HOGS!!!!!


Blessings,
Kari

Finally rested and rearing to go

Well we finally got our first GOOD night of sleep last night.  Got all the kinks worked out with the nurses coming in and so forth and Carsten slept like a charm and I did too.  So here we go on day #4, only 52 to go!  Carsten's feeding therapist is AMAZING, I really really like her and can't say enough good stuff about her.  She's actually a behavioral psychologist.  Believe it or not, all kids are fed by behavioral psychologists here.  Then they get OT, PT outside of feeding sessions.  Basically they all work together in the most harmonious way I've ever seen and are all constantly communicating with each other. The OT and speech therapists let the psychologists know when they're ready for more texture, etc.. based on assessing and working on their oral motor skills.  Carsten gets speech and OT three times a week plus his three meals a day with the behavioral psych and they are also putting in a PT referral for him. But the program is VERY psychologically based, it's so interesting, reminds me of my psychology classes in school.   Then between sessions we go to the awesome playrooms which are supervised, ahhh, supervised, which means momma gets a break every once in a while.  But by the end of the day we are EXHAUSTED! 

So, today they are making some big changes with his eating schedule.  He's not going to be fed any formula through his tube AT ALL during the day .  Then tonight we will start running his pump into his intestines all night long so he still gets his formula at night.  The goal is to increase hunger during the day but maintain nutrition.  It's going to be hard for me just getting through today knowing I can't feed him but he will still get his three meals then start the pump tonight.  When they start pushing volume during the day they will SLOWLY decrease the pump feeds at night, and voila, that's how they wean them from the tubes. 

Our BIG problem is drinking.  They want him to learn to drink from a cup and he's been drinking from a straw for almost a year now.  The problem is it's hard to get the volume and measure with a straw so we're going to an open cup.  He has a lot of trouble with figuring out what to do with his mouth and and his tongue gets all in the way.  So, the OT and speech will be working on that and letting the feeding therapists know when he's ready to do open cup drinking. 

That's about it for now.  Breakfast went great, just trouble with the open cup, but he's taking all his bites.  They have all these terms I've never heard of before but apparently we're still at baseline treatment where they're taking data and determining how compliant he will be with his bites.  There are two people in the treatment room when he's eating, one feeds and the other has a computer and takes data.  I will try to take some pictures if I can.  Got to go grab him and take him to OT and speech.  Will update again later.

Blessings,
Carsten's feeding coach:)

Quick KKI update

Well we're on our second day going into the third.  The team is amazing, really amazing.  I am blown away by how systematic, detailed, meticulous they are about everything that goes in/out of the kids.  I have been feeding Carsten at all his sessions so far in the treatment room while being recorded with the therapist watching from the dark room.  He's had two really nasty throw ups so far with texture, but starting tomorrow, his feeding therapist will take over.  So far, he's eaten mainly pureed foods but today he had a pureed hot dog, Carsten's first meat he's ever had!!  It's really amazing how they can puree anything down so smoothe, I hope they teach me.  His feeding therapist is amazing, awesome, so positive and encouraging.  She and the OT who watched him today are very excited and think he's going to make some great progress and that he has a really good foundation of eating the pureed food.  I think they're already going to begin on textures which apparently is way ahead  of most the kids.  It's a VERY stringent protocol on how they do everything.  The sleep situation is not great so please pray that we get rest.  I think I have maybe a 5X5 space including his crib but thankfully Carsten's crib is nice and he's been sleeping okay.  The verse that came to me all day yesterday was "Give thanks in all circumstances, for this is the will of God for you in Christ Jesus."  So, I'm not going to complain about the little "bothersomes" of being in a hospital and just be thankful we're here.  I was thinking about the story of Corrie Ten Boom and the flies in the Hiding Place.  Great book if you have never read it.  Anyway, I'm blown away by everything so far and so thankful we're here and can't wait to give more positive exciting updates!!  It looks like it will be the full 8 weeks.  I have a meeting with the whole team next Thursday and they will give me goals/expectations/plan so we'll see how that goes.  By the way Baby Bridges is kicking away pretty much all the time I can feel him/her, this week is 18!  Thanks for your all your prayers and encouragement.  Oh, most of the kids in the program all get sick from each other at some point or another, apparently a stomach bug went around a few weeks ago so we missed that, whew!  Please pray for divine protection for Carsten that he would not catch any "bugs" or community viruses while here, I'm believing in faith that he will stay well.  Will update again soon.   

Love,
Kari      

Baby Bridges update

Well we had our first ultrasound this morning! The whole Bridges Bunch was there so that was fun. Carsten was looking at that big screen I'm sure thinking, "I'll show YOU pretty soon!" Ha.

We even got a shot of Baby Bridges waving at us! The Lord has been good to us and we're so thankful he's brought us this far and given us faith to trust Him for his wonderful gifts.

I'll post a pic of the ultrasound one of these days when I'm not trying to pack for an 8 week trip:) The baby looks healthy thus far and the main thing we wanted to see, the heart, had four chambers and everything you would expect to see this far along. We didn't even venture down south so sorry but no sex report yet:) Chad is ALL about surprises and I too admit it would be pretty special to find out the sex the old fashioned way so we're shooting for that if we can make it:) Oh some other fun information was that I am actually 10 days further along than we thought, 17 weeks, so now our projected due date is Feburary 14th, Valentine's Day!!! How great is that, our little Valentine baby, God is so good. Happy Friday everybody!

Trusting Him,

The Bridges

So I've decided this morning I'm going to write a book, it will be called "Christian parenting and children with disabilities, how to be a grace-filled advocate."  That is how I felt this morning after I chewed out a therapy supervisor on a voicemail anyway.  The verse that came to my head later was when Paul was talking about "doing what he DIDN'T want to do."  Yep, that's me pretty much all of the time.  Well I'll let you guys know when I figure out WHAT EXACTLY to put in the book, I think I'm about 20 years (or never) to figuring it out.  I have so much to learn about being Carsten's advocate yet so much more to learn about being grace-filled.  That's all I will say about that, I'm definitely a work in progress.

We leave Saturday for Baltimore!!  I got my hospital packet in the mail, I read every word of it and let me tell you I'm going to bring the exact amount of underwear they tell me, no chances of getting kicked out:)
I'm looking forward to the drive with Chad and the weekend, hopefully some good family time before we say our goodbyes.  I'm thinking the hardest part is going to be that I can't eat seafood and we'll be right on the east coast!!  I'm sure Chad will get a lobster or something Sunday night to rub it in:)  I don't see the hospital offering lobster anyway so I shouldn't be too tempted otherwise.

Chad always talks about the one positive reason you go to the hospital is for having a baby.  Well, I have to respectfully disagree with him now.  This is a pretty positive reason and I just know the fold out couch, roomie with screaming child, cafeteria food, boredness, trying to contain a two year old, tiny room with one phone, constant vitals, (ugh) no privacy, separation from my spouse will all be worth it in the end!!!  I'm think this time will be much different than the NICU stay and open heart surgery.

I heard baby Bridges #2 heartbeat this morning!  This was the second time I've heard it.  Waited for 2 hours to pee in a cup, get my blood pressure, then listen to the heartbeat; definitely worth it though and Carsten was a trooper as always.  I'm 16 weeks this week, unbelievable.  I need to post some belly shots soon!  Someone told me yesterday for the first time she noticed a "bump":)  Now if I could only count my love handles in the back as part of that "bump"!        

Soon to be blogging from Baltimore!
Momma Bridges  


  

Atlanta NASCAR race

Okay Ladies, take a nice close look at the hot guy in the middle of the picture. Look closer, yep, believe it or not it's Tom Cruise!! My darling husband was inches away from the heartthrob of the century last night at the Atlanta Motor Speedway while I was home eating takeout pizza and changing poop diapers!!! Now if that is not WRONG, I don't know what is!!

I wasn't really jealous about Dale Earnheart, Jeff Gordon, or any of those other people he got to see while he was watching the race from the PIT! But this just draws the line!!! Bitterness aside, Tom is pretty hot in person don't you think? Chad is calling him by a first name basis now, I guess he feels that being a foot away from him for 5 seconds qualifies:)! I would post more pics from last night but seriously what else do you need to see:)




Now take a look, this is the real hottie right here. I think he beats Tom Cruise anyday:) I'm so glad you had fun last night babe!

KKI here we come!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (It's for real this time!)

Just got a call from the KKI girl this morning, the finances have been negotiated and she asked if we could be there by late next week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've been crying all morning I'm so excited!! I found out at the gym, the people probably thought I was crazy when I started raising my hands, crying, laughing, and screaming. But I don't care, we're going to Baltimore!!!!!!!!!!!!!!!! We want to stop and give GOD the GLORY first!!! This is all him and we would be stupid not to thank Him for making this happen. He is so good to us and his plan and timing is perfect. We are trying not to put all our hope in KKI but continue to put our hope in God. We know it might not be a miracle fix to Carsten's eating but we do know it's another step in the right direction. Just thinking about him possibly being able to eat a cracker brings tears to my eyes. Okay, no more crying because I already got ready and have eyeliner and mascara on:)

So here are some prayer requests if you think of Carsten and our upcoming adventure. Please pray that Carsten, Chad, and I arrive safe home on Saturday (I've been in NWA visiting family for the past week and a half and Chad flies into Little Rock tomorrow to ride back with me). Pray that I remain calm and get everything done that needs to be done before we leave next week. Pray for safe travels to Baltimore (we don't know if we're flying or driving yet) and that Carsten would NOT get sick before we go or during our stay which could really prevent him from making good eating progress there. Pray for Chad and I, this will be the longest we've been away from each other (the program is 6-8 weeks). It's nothing compared to a deployment which I'm sure we'll face one day so we're looking at this as practice:) And please just pray for wonderful, amazing, progress and a child that eats primarily by mouth when we leave.


Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!!!!!!!!!! That's it for now. We might look into a small laptop for me to take to Baltimore so I'll definitely be blogging through the program to give ya'll updates:) Thanks for your prayers, love, and support.


Love,
The Bridges