Growing up

Mad after his diaper change!

Riley Hospital crib

Kaleb is one month old!

Wow has time gone by super quickly! One month already!?! He is doing so good too, he graduated to a crib today! He weighs 4lb 12oz and is 17.4 inches long now, growing like a weed! He is getting 1.22 oz every 3 hours and doing great on his formula.
He still has some fluid around his heart that the doctors are watching and giving him steroids for. Hopefully the steroids work and the fluid goes away soon, because as soon as we get the "all clear" he can start trying to use a bottle, but because of the fluid they want to wait because trying a new thing may stress him out!
I miss him sooooooooo much, I have not been able to get down to see him since Monday, it has been an extremely busy week. I also thought I was getting sick on Wed. but false alarm thank goodness, must have been something I ate!?!
I don't know when I will be able to go again either, I will need some babysitter volunteers for Kiley this week too. I think I need a personal assistant too, any volunteers for that? lol... just kidding!
Thank you everyone for your continued prayers, God is listening and doing a mighty work in my little man!
Ginger

Holdin' my own! Binker that is!

Another wonderful day

Today was an awesome day with Kaleb, the girls (Kimmy and Kiley) went with me down to Riley Hosp., they finally got to see him and touch him, I don't know who was more excited about that, them or me for them!! I got to hold him for about 45 min. while he got his "gravity feeding" of about 5/8 ounce of formula. It was soooo awesome to hold him without all the tubes and wires and stuff that used to be attached to him! He now just has the nasal cannula(on room air)and the feeding tube in(both in his nose) he does still have an IV port in and a couple wires for heart rate and stuff but that's all!And they had clothes on him finally! They were so huge on him but so adorable! He did not want his pacifier while I was holding him he just wanted to snuggle! He is still at his birth weight of 4lb 3oz but should start gaining soon since they keep increasing his formula intake amount. They also said probably another week and he should be ready to get out of the isolet and into a crib! He has been doing a great job with all the goals they have set for him.
He does have a small amount of fluid around his heart which isn't causing any problems right now so they are just monitoring it closely with echo-cardiograms everyday!
Tomorrow the girls and my Mother are going down with me to see him again, of course Grandma wants to see Kaleb again but mostly to Kiley-sit so Kimmy can have more time with Kaleb. At Kiley's age she can't be in there too long before she just gets bored and she is only allowed 30 min. anyway.
Forgot to take new pictures of him today so I will have to do that tomorrow, sorry there was so much excitement I had a ' blonde moment' and forgot to 'capture the moment'!
I try not to get my hopes up too much just in case there is a set back but how can you not when things seem so good, the Lord is doing a mighty work indeed!!

For His glory,
Ginger

A good day for Kaleb!

Today was a really good day for Kaleb, he got the tube out that drained the fluid off his lungs, he got the tube out that was sucking the air out of his belly, he got his "oxygen" turned to room air and he started back on formula tonight and this time it will be on "gravity feed" and try to suck his pacifier while he feeds, simulating real feedings and that will be 5ml ( about 1/2 an ounce) every 3 hours to start out. Hopefully he doesn't get gassy air in his belly from it, the doctor never did figure out what caused it.
Such exciting news, compared to a few days ago!
I also found out that the "flu season restriction" ( no one under 18) has been lifted and now my daughters can go visit him! They are so excited because they have not been able to see him in person, only photos and I am so excited for them!
Well that's all for this note, thank you everyone for your continued prayers and support!
In his name,
Ginger

Kaleb is 20 days old!

Hi everyone, just another short note to keep you updated on Kaleb.
I went to see Kaleb on Monday he is 20 days old! I can't believe how time has passed so quickly!
He had overnight the night before some trouble with air in his belly (intestines) and so they had to stop his feeding and put in a tube to help suck out some of the air.They did x-rays and they always just showed air, so they aren't sure what has caused it yet!
But today he is doing much better, over night last night and today he has been passing alot of gas and filling diapers with stinkies!!! So I told them about both my girls having alot of gas problems as infants and how one of them even had to use the formula called Alimentum(for milk and protein sensitivity) so the nurse is going to let the doctor know! (funny how you forget these things until something happens, then you are like " oh yeah"!!)

He is still having a small amount of drainage from his chest tube from fluid around his lungs, they expect that to be done in a day or two.
He is alot more awake and alert,it is so neat to see him actually looking at me and turning his head to see me when I am talking to him.
The Lord is truly working inside Kaleb and only He knows the final outcome, but I have to say that I am so thankful and so blessed to be a part of Kaleb's journey wherever He takes us.
For His glory,
Ginger

Thinking about serious stuff!?

Peacefull sleep

One step forward and two steps back

Yesterday(5-12-2011) I went to see Kaleb at Riley Hosp. and got a not-so-good surprise, apparently overnight he had started having trouble breathing and they did an x-ray of his chest and found a pocket in his lung that was collapsed and to help him open that pocket they put him back on the CPAP which forces air into the lungs even when he is breathing on his own. They said in the morning they would do another x-ray and hopefully everything would look better and they would be able to take him off the CPAP.
They also said his hemoglobin was a little low but they didn't want to give him blood yet, they wanted him to have a chance to try and make some on his own.
Other than those 2 things, lol, he was doing fine!
His weight is up to 4 lbs, he is getting about a 1/4 ounce of formula through his feeding tube every hour around the clock.
He is still maintaining his body temperature at about 97.7 F
He is still learning to suck on the pacifier.
He is still moving around, rolling side to side, keeping the nurses on their toes!! For example while I was there he somehow pulled his feeding tube out of his throat, yeah clear out! ouch?!?

See this tube in my mouth, I am going to pull it out!

See, ha ha it's out!!!

Hey, mom! Did you see that? I pulled out my feeding tube, don't tell the nurses okay?!

So on to.... Today...... Happy Friday the 13th
Today another not-so-good day, Kaleb's x-ray this morning showed fluid on his left side of his lungs which is causing him to breath hard and his hemoglobin count is lower.
So...Today they have to put a tube in to drain the fluid, which is almost another surgery to do that, he has to be sedated , on medicine for pain, have a hole cut in his side for the tube, while they watch an ultrasound to make sure they don't poke anything they aren't supposed to! Big, scary stuff for such a little guy! Plus he has to have a blood transfusion because his hemoglobin count is so low.
He is doing well after his procedure, he is breathing much better now that some fluid is being drained off.
He has had 1/2 his blood transfusion and it went well, he will have the other 1/2 at 10:00pm tonight.
He still has the CPAP to give him some extra oxygen.
So for now he is resting after his way too exciting Friday the 13th!
Thank you all for your continued prayers for Kaleb and our family.
For his Glory,
Ginger

Just a little note..

Short note today, but I want to keep everyone up to date on Kaleb.
Today was a big day for Kaleb, he got his breathing tube out this morning and all day they have been weaning him of the oxygen cannula tubes(in his nose) They now have it at a really low saturation because he is doing all the breathing on his own! Yeah rah go my little man Kaleb!
They also said his urine output has improved which means his kidney function is improving!
All big steps for such a little guy, but little steps on the road to recovery for him to come home!
Thank you everyone for your continued prayers, it is wonderful to see how our great Lord works in our lives.
In His name,
Ginger

The good news and the bad and the bad!?

Happy Cinco De Mayo!


Well today Gary and I went to Riley to visit Kaleb and to talk to the Genetic Counselor.
So first the good news....
We got to see them move Kaleb back up to the 3rd floor NICU today, very exciting and a big move for Kaleb, moving out of PICU to NICU means he is recovering well from his heart operation and hopefully getting the breathing tube out soon, like in the next couple of days we hope! Then on to just getting him fattened up! hehehe
And now the bad news....
He has been having some kidney problems ever since he got to Riley and they have had the gastroenterologist and urologist doctors keeping an eye on him, so today they tell us that he will have to be on meds for his kidneys probably his whole life and that they hope as he grows and gets stronger it gets better, but worst case is kidney failure. I think Kaleb tried to say "failure is not an option" today but with the breathing tube in his throat it was hard to understand him.

Lastly the Genetic counseling.....
Kaleb has Translocation Trisomy 21 or t(14;21) which means that he has 3 chromosome 21's but part of one of those 21's is attached to chromosome 14,this means nothing different for Kaleb he has Down Syndrome. This can happen two ways, one way is spontaneous during fertilization (it just happened) or Gary or I could be a "carrier" of the 14;21 chromosome and don't know it. The first way happens about 75% of the time and the second 25% of the time.
So we will be getting our chromosomes looked at in the near future. If it is one of us we could have passed it on to our other children too, so they will have to be checked if one of us is a "carrier", because it will increase their risk of having a Down Syndrome child also.
On to more fun stuff to talk about...
Kaleb was sleepy when we first got there but of course he can't resist seeing me and big news daddy was there too! so he got those eyes open pretty quickly to check us out. He was all wrapped up like a burrito and was wiggling around trying to get out(I think he wanted to hold my finger:) he likes that) but he set off the alarm and the nurse come running, she said he coughed and needed some fluid suctioned, an alarm goes off for that!!!!! Another gray hair for mom...lol
Not much else happened, we couldn't stay long today because Gary had to work, but it was a great visit,Gary hasn't got to see him since he has been at Riley, so it was sweet to see the two looking at each other and Gary talking to him.
So I probably won't be able to get back down there until Monday, Kimberly is home this weekend and I need to spend some much missed time with her . It is great to know that Kaleb is in such wonderful and caring hands there at Riley it makes it much easier to catch up on much needed family time and healing time that I need.
Thank you everyone for your continued prayers for Kaleb and our family.
In His name,
Ginger

Surgery update!

The Lord was definitely with us yesterday ( May 2, 2011)
Kaleb came through surgery with flying colors!!!!
The surgeon was very pleased with how everything went, he said that all things went smoothly and there was no surprises when he got in there. He said he did not for see any complications arising but reminds us that he did just perform surgery on a 5 day old preemie baby! Anything can happen! Kaleb remained sedated until this morning when they will start to slowly wake him up. Today he will remain in ICU so they can closely monitor his heart and pain levels. Hopefully tomorrow he will get to go back to NICU and be on his way to recovering to come home!
He seems to be a strong little guy, a real fighter! Just watching how much he worked at trying to get his little eyes open to see me was incredible! All day long he struggled with one eye open, then the other eye, but just couldn't get them open together and then literally right before they went through the surgery doors, I was saying my "see ya laters" and he opened both his eyes really wide, it was awesome. The wonderful nurse was ready and snapped the picture! What a precious gift for me to see his eyes!

I may not make it down to Indy to see him everyday until I am healed, remember I just had major surgery too, a C-section! and after one day of walking around Riley Hosp. I am very sore, so then I need to rest a day. I am healing pretty good and am sure that in a few more days I will be able to handle going more often.
Remember also that I do have other children and a husband who need me too.
So that said, I will give updates as much as I can.
On to another subject.....Down Syndrome.
Kaleb does have Trisomy 21 or Down Syndrome. We will be getting together with a team of people at Riley Hosp. soon to discuss this and how we can help him to his fullest potential. At this point we do not know the severity of it. That will be discovered as he grows up!
But as with everything, we know God has given us this precious little boy and we will be doing all we can to glorify Him in this and raising Kaleb up to Him.
Thank you again for all your prayers
In His name,
Ginger

After surgery

Coarctation of the Aorta- what?

As most of you know Kaleb was diagnosed with AV canal Defect before he was even born. If you do not know this you might want to read previous notes I have written about it.
After Kaleb was born they did an echo cardiogram on him and discovered he also had something called...
Coarctation of the aorta: Part of the aorta, the large artery that sends blood from the heart to the rest of the body, is too narrow for the blood to flow evenly.
So on Monday May 2nd, Kaleb will have surgery to fix this problem. From talking to the surgeon it seems to be fairly simple surgery lasting only 20 min. but of course it will be done on a 5 day old preemie baby, which is always risky! The surgeon will cut away the narrow part of the artery and sew the open ends together. This is not open heart surgery, he will make an opening a little under Kaleb's left shoulder blade, on his back , he will go in moving his lung aside there is the artery, and he fixes it. He said from beginning to end it will be more like 4-5 hours, he said it will take about an hour just to sedate Kaleb! After surgery Kaleb will have a drainage tube there for a couple days.
Kaleb will be in recovery from this for about a week, we will still be able to see him though!!
They cannot give us a time of how long he will need to stay at Riley, but the surgeon did say he didn't expect it to be more than a month.
So if all goes well with surgery and recovery he will be home with us hopefully in about a month from now!
Then hopefully we live "normal" lives until he is about 6 months old and that is when they will do the AV Canal repair, which is the big surgery, because it is open heart surgery.
Thank you all again for your continued support and prayers,
In His name,
Ginger
p.s. I almost forgot, on Monday the results should be back from the Chromosome Test , the one that will tell us if Kaleb has Down Syndrome.