Aortic arch ballooning...again!

Hi everyone,  I have been having so much fun getting to know Kaleb that I almost forgot about my blog...do ya blame me??? I knew you would understand! I am sure some of you are eager for an update on my little man so here it is...well for the most part he is doing well.

He is gaining weight and growing and is smiling and cooing and being a wonderful little baby.

What isn't going so well is his heart!

He will be having a procedure Wednesday the 28th to balloon his aortic artery AGAIN! Thats right he had this done before it caused him to have a blood clot in his leg! Well the artery is 85% blocked and that is VERY serious .I have been watching him very closely the last few days, hoping we make it to Wed. and not have to have an emergency procedure done before! So far so good, he does sleep alot more and wears out easier from eating and play, but doesn't seem to be in any pain. 

I appreciate any prayers you could give especially Wed. at about 11:00 am when he is scheduled to go in. They said he should be able to go home later that day but to bring a suitcase with me  just in case he has to stay. I can and will be staying in the room with him if he has to stay over night. 

I will let everyone know as soon as I get home how it all went. 

Thank you and God bless,

Ginger

Getting to really know Kaleb...We are home!

Well, it's been a few weeks now that Kaleb has been home and he is doing very well!

 Tomorrow he will be 4 months old! Really???!!! Wow how time flies!

I have been learning so much about him, he is such a happy little guy. I thought that I knew him but I guess it is hard to get to know someone you only get to see every other day and then most of the time they are asleep and hooked to machines. We have our whole lives ahead of us and I am so looking forward to being his Mommy!

He has already been to a few Doctor appointments back at Riley Hosp. and we have gotten some good news and bad! Mostly good though!!!

Good News: Kaleb will be having his AV Canal defect fixed(open heart surgery) on Novembr 10th, at Riley Hosp. I will be taking him down on the 9th and getting him admitted and then spend the night with him in the Ronald McDonald House and his surgery will be in the morning on the 10th. Yeah, I can't leave him this time, I have hard enough time leaving him to go to the bathroom...hahaha!

Good News: He had a "sleep study" done on Tuesday the 23rd and the results from that were awesome, even though he really didn't sleep. We can now unplug him from the apnea monitor most of the time! He only needs plugged in over night and when riding in his car seat! woohoo!!!

Good News: Also we got to turn his oxygen down from 1 liter to 1/4 liter, yeah!

Good News: He is up to 10lb 9 oz as of todays weigh in with the Home Health Care Nurse, which also discharged him today from their services, she said he is doing great and they are not needing to see him anymore !

Bad News:(  he has mild acid reflux and had to be put on another medicine to help control it, Prilosec!

Good News: The Prilosec worked!!

See only one Bad News!

I am so thankful for every second I get to spend with him, he is such a beautiful little boy and I am sure the Lord has big plans for him.

In His name,

Ginger

Kaleb is coming home!

Yep that's right it is finally happening! Tomorrow(Friday) we are going to Riley Hospital to spend the day and night with Kaleb and possibly be home Saturday. If we do not feel comfortable yet we can stay Saturday night also and come home Sunday.
 I am so proud of my little man, he is such a strong little guy, of course he knows nothing else except Hospital life and I cannot wait to show him all the beauty outside!
If only I could hide the "ugly"!

Learned Alot Today

Today was a very long day! My oldest Daughter, my Mother, my Mother-in-law and I , all went to Riley Hosp. today to learn. What did we learn....  Infant CPR, about oxygen monitors, heart and respiratory monitors, G-tube feeding, giving meds through the G-tube and inserting a G-tube in an emergency if it gets pulled out. All of this took 4 hours!  I now have information overload!
The news on him coming home is " a couple days" they still have to do the car seat test, which the nurse said she would probably get done later tonight and straighten out some medicine issues. I am getting so excited, I can hardly stand the wait!
So as soon as I get the call I will let you know, if I don't just pass out from all the excitement!
Thank you all again for your continued prayers for Kaleb and our family!
Ginger
P.S. Here are the G-tube pictures I promised.

This is the tube right now.

Here is a close-up.

After a couple weeks they can put on what they call a "button" and take the tube you see sticking out off.

Then when it is time for him to eat you "plug" the tube into the "button" and feed him.

Thay make it sound so easy! I hope they are right!

G-Tube surgery

Well today was the big day! G-tube and circumcision! Kaleb did really well and was off the breathing tube right away, unlike previous surgeries when it took all day and sometimes two! He seemed to be feeling okay, in a bit of pain, but the anesthesia wasn't worn off  when I saw him right after surgery at 11:00 am, he is probably "feeling" it now, but they said they would be giving him pain meds if needed! He is such a trooper, I am so glad he won't remember any of this!
Here are some  pics of him after surgery, this is one reason I created this blog, I always wanted to see what my child would look like after procedures and could never find pictures .

On top of his head is his IV line, they like to put it there on infants , easier than their arm or leg!

Kaleb trying to wake up!

Sorry I forgot to take a picture of the G-tube, blond moment!

I will get one at next visit and get it posted for you!

Kaleb is coming home soon!

HI everyone, thank you all for your continued prayers. It looks as if Kaleb will be coming home in the next 2 weeks.
We went to Riley yesterday for our second "care conference",(this is where the DR.'s and nurses give you updates on how your kid is doing) and they said about 2 more weeks and this is why:
1. We (the Dr.'s and us) have decided that a G-tube would be best for Kaleb. A G-tube is a tube that goes directly into the stomach for feeding, no more tube in the nose/mouth. The Dr. said that since Kaleb has been on the NG tube (the one in his nose)since birth, he could develop an aversion to things in his mouth and that would be bad, he may not want to eat , ever! So we are getting it out! Kaleb will continue with bottle feeds, this will just help him with whatever he cannot do through the bottle. He is doing well with the bottle but he still gets very tired, this is due to his AV Canal defect (hole in his heart), after his surgery to repair the AV Canal defect he should be able to get rid of the G-tube.
This G- tube installation is an operation, so it will require some recovery time afterward.
2. They will be doing his circumcision while he is sedated for the above surgery.
3. They need to do a sleep study on him. This is where they will decide how much oxygen Kaleb needs.
4. He has to do a car seat test. This is where they monitor him in his car seat for the length of your car trip home, our case 1 1/2 hours.
5.The first night away from the NICU we have to stay in the "Towers". This is a place families can stay inside Riley with their child for the first night in case anything goes wrong or forgotten questions arise! And the Dr.'s and nurses are a few steps away!
So ...all the above takes time, schedule of surgery, hopefully they can get him in on Monday or Tuesday, then recovery a couple more days, then sleep study etc... so you can see we are getting there!!
Anyway I have been really praying about this G-tube operation, it is an elective surgery and I keep telling myself it is to help him eat and stuff but I feel bad putting him through another surgery. If anyone has experience with this, I would love feedback from you.
Also we have already seen the ignorance of people who lump everyone with a disability together without seeing what their individual abilities are. YES, here at Riley Hosp. The Dr."on duty"( they are on for 3 weeks at a time) said in our last "care conference" that she didn't think Kaleb would be able to take a bottle because children with Down Syndrome have low muscle tone and have week esophagus', surprise he can take a bottle and he does it well, she said in this conference how surprised she was, she couldn't believe he could do it! She said he surprises her with alot that he can do! Doesn't surprise me, he has been a fighter from day one! I knew he could do it! Why? Cause I am the Mom that's why!! Sorry had to vent a little!!!
Hope I didn't forget anything , sorry the note is so long.
Thank you again for the continued prayers, I see the light and it is Jesus!
In His Glory
Ginger

Sleepy boy

Kaleb was sleepy when I went to see him on Monday, he had just finished "tummy time" and lunch so just got a couple pictures of him to share. They had to move his feeding tube to his mouth because his nose was getting sore from it.

Big Day for Little Kaleb

Well today was a great day for Kaleb, he was taken off his Vapotherm and put on regular nasal cannula oxygen 1 liter. We are so excited about this step because now we can finally move towards the bottle! He also got his first ride in a baby swing and absolutely loved it! He seems to be a motion lover just like his sisters. I will be going to see him on Monday and I hope to have some great new pictures to post for you!
Anyway I want to thank everyone again for all your prayers, especially for me and being able to wait for things in Gods time! I am getting better, but it is still so hard to wait for my baby to come home!
God Bless you,
Ginger

The Girls

       

The Girls

Kim(12) and Kiley(3)

I just realized that I haven't posted any pics of my beautiful daughters, so here they are! 

Psalm 27:14

Wait for the LORD; be strong and take heart and wait for the LORD.

Leg is feeling better.

Just a little update to let you know that when I saw Kaleb on Tuesday his leg seemed much better, they had not done an x-ray yet, but the clot may be gone! I changed his diaper and no screaming when I touched his leg!! I was also moving him all over the place and he even stretched out his leg once or twice while I was holding him and no tears. He was still holding it up next to himself though, maybe to protect it!?
This has been another busy week and add in the brakes went out on the truck, so my husband has been taking the car to work until he can get it fixed, which leaves me "car less":/
When I do get to go back to see Kaleb I will give another update.
Wow, and I just realized week number 1 of our "he might get to come home in 3 weeks" just passed!
so maybe just 2 weeks left!?
Take care everyone and God bless you for all your prayers.
Ginger
P.S. Pictures from the visit are below!

Trying to suck thumb

success!

bored with all this

my beautiful little man

When can Kaleb come home?

Hey everyone!
We went to see Kaleb today and to have a meeting with the doctors to find out when Kaleb can come home, so this is what we found out!
1. We are looking at at least 3 more weeks.
2. His heart is looking good, no new issues there.
3. He is still having respiratory issues and is still on Vapotherm but they are trying to ween him off.
4. He may be coming home on a feeding tube.**
5. He may be coming home on oxygen.
6. He weighs 6lbs 7 1/2 oz.

**If he does need to come home on the feeding tube they said it should be only needed for a few weeks.

Please pray that in the next few weeks the doctors will be successful in weening him off the Vapotherm and that no additional oxygen will be needed to come home on. Please also pray that then they will be able to introduce the bottle and he will be successful in the suck, breath, swallow reflexes needed to use the bottle.
Oh yeah and  I almost forgot, Kaleb has a blood clot in his femoral artery on his right leg, it isn't causing any problems with blood flow because blood has been going around to his leg in other veins but it is causing Kaleb alot of pain, he keeps it drawn up tight to him and screams if you touch it! They have had him on blood thinners but cannot do that for long periods because he is so little but they don't help clots anyway, they have to resolve on their own, which could take weeks! They are giving him Tylenol for the pain but not much help! So also pray that this will go away quickly!
For his glory,
Ginger

All I do is sleep and grow

sleeping peacefully

II Cor. 1:3,4

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

What's been going on....

So it's been a while since my last update and I apologize, things have gotten a little crazy around here, I was having a hard time keeping up with my house work and visiting Kaleb and taking care of the others in my family, including myself!!
I was trying to catch up a little and lost track of time for an update!
Anyway, on Monday June 13 Kaleb had 2 ounces of fluid removed from the sac around his heart, all went well with that procedure. It made him feel much better, I have actually heard him REALLY cry now, with all that fluid pressure he couldn't!
Next on Wednesday June 22 he had a procedure done to widen the aorta artory that he had his first surgery on, some scar tissue had formed and was causing a blockage. All went well with that procedure also!
Now he is recovering from the above procedure, I saw him today and he looks good. He did have a little issue with some poor circulation in his right leg but they were getting that under control while I was there visiting! They said this happens alot.
Now what!? Well we will be having a meeting on Monday June 27th(his 2 month birthday) to find that out! We will be meeting with all his doctors and nurses and anyone else involved in his care and they will tell us what needs to be done so he can go home!!!
I am trying not to get too excited but it looks as if it will be soon!
I know of 2 things that need done yet and they are circumcision
The first one you all know about...eek!!
The second is where they test how he will do in a car seat ride for the length of your trip home, our case an hour and a half. They strap him in his car seat with monitors on and monitor him for an hour and a half!!
I would like him to be off the feeding tube and on a bottle but they have already said that is not criteria for going home, he can go home on the feeding tube.
What else I have no idea:/ Hopefully not much!
Please continue to pray for him to recover from the last procedure and that there will not be anymore great hurdles to get over for him to come home!
His weight before the procedure was 5lb 13oz, but they had to stop feeding him for 12 hours before, glad I wasn't the one who had to deal with that, he LOVES his food and gets very mad when it is late!
Well I will try and remember to post a follow up note after our meeting on Monday to let you all know what is up, thank you for all your prayers.
In His name, Ginger
P.S. Please pray for me to have patience and understanding if there are big hurdles yet to cross for him to come home, Thank you!

Your going to put what... where?

After heart Catheterization procedure(balloon)

breathing tube in...

breathing tube out!

Kaleb hates tubes in his mouth! I think I would too.

Look at me grow

Kicking

Looking at mom

Going to Disney Land

Trying to wake up

When I get out of here I am going to Disney Land!

This is such a cute crocheted hat and blanket! Someone left it for him at his bedside in the NICU.

Post-Op pictures

After the procedure to remove fluid from around his heart, see the square bandage on his left side.

Snuggling with mommy the next day!

Proverbs 3:5-6

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

Snug as a bug

Kaleb has a crib toy now!

And goopy eyes!

Kaleb has blocked tear ducts, so if his eyes look strange in any photos that is why!

Kaleb is 6 weeks old!

I went to see Kaleb on Thursday 6-6-2011 and that night we had a HUGE storm that fried both of our computers so I couldn't get new pictures up until today or write about my visit!
So about my visit...
when I got there he was asleep of course and I worked at waking him up for a while then the nurse asked if I would like to give him a bath, well YES!!! So I got to give him a bath with a wash cloth and a bowl of soapy water! It was so cool, I have to admit I am crying right now as I am writing this, it is getting really hard to leave him there now as he gets bigger and more alert! By the way he
weighs 5 lb 3 oz !!!

I try not to dwell on the fact that his whole life(6 weeks) all he has known is tubes, tape on his face to hold the tubes, monitors, temperature every 3 hours, noise every where, he had surgery at 5 days old etc.... that he has never seen the sunshine, or felt the wind blow, he has never played with a rattle or been snuggled in his OWN blankie, he has never been held by his Daddy! I know all this will happen and probably (hopefully)very soon.
I look at Kiley and think how she never spent the night away from me until I went into the hosp to 'not' have Kaleb. But Kaleb hasn't got to spend a night with me yet and in his six weeks of life I have only held him about 6 times. We take for granted when our children are born that everthing will be okay, we jokingly count their fingers and toes when the are born,we get to hold them right away, we nurse them (or bottle feed) right away, now a days they stay right in the room with you after they are born they never have to leave your side, most of the time EVERYTHING works as it should. If this is what you experienced with your chidren(or not), please remember to hug them today and thank God for the perfect little child he gave you! I thank God more than once a day for the perfect little Kaleb I was given, it has been very hard some days not to just cry and say I can't do this, but I would never give him up, never change a thing, Why!? Because I know in Gods eyes Kaleb is fearfully and wonderfully made. (Ps.139:14)
Just a note... I thank God for Kimberly and Kiley more than once a day too, these two girls have been awesome through this whole thing, God has given me some really great kids!

Sorry I got off subject, my visit with Kaleb....
He still has some fluid around his heart but it seems to be going away slowly and he has been having some breathing issues, they think it's due to the fluid and they put him on something called vapotherm
(moisturized  oxygen) , basically he is off of the room air and now on vapotherm. So the doctor said they are going to continue to watch the fluid and as it goes down hopefully Kaleb's breathing will get better and they can ween him off the vapotherm. It is a little bad news because when he is on the vapotherm we cannot try the bottle.
I reminded myself today that we still have about 2 weeks 'til his due date, he shouldn't be here yet! so try to look at it that way!!

Thank you so much for your continued prayers for Kaleb and our family, God bless you all.
For his Glory, Ginger

Cuteness

Just after my bath

Burrito Baby

Cute smile

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.

Surprise!! Kaleb is born!

Yep, he decided to come early! About 10 weeks early!
So here is what happened.... On Wednesday April 20, after getting home from church that evening, I put Kiley to bed about 9:30 pm, when I came downstairs and went to sit down I leaked a little. But I wasn't sure weather it was a bladder control issue or my water breaking, so I went on to bed myself not realizing then how overly tired I was feeling, the next morning I took Kimmy to school and then contacted my midwife to tell her I had been "leaking" all night long and wasn't sure what it was all about. She wanted to see me right away, so at her office she did an exam on me and said it was my water that had broken! And that I need to go to the Hospital right away. Well , I was given an hour to go home, get my husband, get Kiley to my mother's and pack a bag and get to the hosp.
After arriving at the hospital I got a steroid shot to speed up the lung development of Kaleb and they would do another shot in 12 hours and I was also put on antibiotics in case of infection and something to stop the contractions. Things were happening pretty fast but ultimately the goal was to keep me pregnant as long as possible.
So for the next few days it was alot of blood tests, monitoring, IV fluids, ultrasounds, laying in bed and boredom!
Until day 8, that would be April 27th when after calling the nurse in to unplug me from the monitor to use the restroom I found out that I was bleeding really bad.
Then things started moving even faster, Kaleb needed to come out now, by C-section. The doctor said call whoever you need and tell them to come now, I want to be in surgery in an hour.
So I made my calls and as soon as my husband got there we went to surgery.
Kaleb Samuel DeMoss was born on April 27th at 6:20pm, he weighed 4 lbs. 3 oz. and 16 in. long
And has a head full of dark blondish- light brown hair.
Kaleb was head down that morning when the ultra sound was done and in surgery the doctor said he must have flipped around because now he is breech! And the cord was around his neck and when he flipped it tore the placenta, which makes you bleed. Luckily the tear was small and I only lost a little more blood than normal, no need for any transfusions!!
Kaleb has some other things wrong with him besides the fact that he is premature and has AV canal defect, he is at Riley Hospital for Children in Indy and I am home.I will be going to visit him as much as I can. I will write more about his condition in another note. I will say in this note though that he is okay but has some struggles ahead of him and could use all your prayers.
In his name,
Ginger

Getting ready to go to Riley Hosp. Pics

Getting ready to go to Riley Hosp.

At Riley Hosp.

Sleeping so cute!

CPAP pics

Day 2 with CPAP peeking!

Day 2 With CPAP

                               

Update

First I want to start by thanking everyone for their prayers, this has been a much easier thing to deal with knowing you are all there for us and I know Kaleb has stayed consistent in his growth and progress because of your prayers for him. I have to admit the 1st time we went to Riley for these tests I was terrified by the news we received, but now as we have been there several times and had everyone praying for us and the news has never gotten any worse, only better or the same as last time I am sure the Lord is at work here through your prayers.
So on with the update....
We went to Indy to the Riley Children's Hosp. at Clarion IU North on Friday April, 15th for the Echo-Cardiogram and level 2 ultra-sound again. As the last times everything looks the same, he is growing well, although they say they think he may be small 6-7lbs, where I am used to 8-9lbs for a baby. I think they are crazy, they say he is measuring at 3 1/2 lbs now which is normal for 31 weeks pregnant ( you can Google it..lol) and well I have 2 1/2 months left to go so he should gain another 4-5lbs in that time so that is 7-8lbs. Who knows ???????????
Next they said again that all his "Soft Markers" look good for no DS, but of course we will not know for sure until he is born and they test his blood.

We do not have to go back for the Echo-Cardiogram again, because this is the last time they could get good pictures, since now his bones are getting denser and it is harder to see through them to the heart. YEAH!!
But we do have to go back for the level 2 ultra-sound because he is "small" they say....I know I am not a Doctor or expert on this but as I said above........ I think they are crazy!
So we will humor them and go back in 3 weeks.......
Until then, God Bless You All!
Ginger

No news is good news!?

Well we went back to Indy to the Riley Children's Hosp. For our second fetal echo-cardiogram and level 3 ultra-sound on Friday March 11, 2011 and like the title says " no news is good news"!!
Everything looked the same on the 2 tests done and the Dr.'s found nothing new, so we get to go back in another 4 weeks to do this all again!! I am glad they are so thorough with this matter but I am kinda worried about all the bills about to come in and all the bills that we will have after he is born with this defect!
" Lord do you think I have a money tree in my back yard?"
I know He will will provide but it is still scary thinking about it all, Please also pray for me to trust in the things the Lord is doing in our lives.
Thank you all for the prayers so far, I love you all and and know the the Lord will bless you.
In His name~ Ginger

P.S. We have decided on a name!!!! Kaleb Samuel DeMoss

Another Doctor Consult

I went for a consult with another Dr. today and this is what i found out: All the Dr.'s (my midwife, the Dr's at Clarion North & this new Dr.) agree that from looking at both ultrasounds my due date is off, apparently my due date was June 16th (not the 6th, I miss heard?!?) NOW...my due date is July 2nd.

They also seem to think that this AV Canal Defect may be all that is wrong. They all agree that other than this problem he looks terrific. All the "soft markers" show normal!

And right now all agree that he can be delivered here in Lafayette, by V-Back . They are going to check with my pediatrician and a couple more Riley Specialists though and get back with me.

This does not mean we are 100% sure about the DS, but it does seem to be looking up! And it does ease my mind a little that all these Dr's agree that he looks great other than the AVC Defect. But we will love and accept this boy that God has given us no matter how many chromosomes he has!

Thank you to everyone for all your prayers, so far it's working!!

In His name,
Ginger

Getting Started!

Hello! This is our family story, mostly about our special gift from God, our son who will be born with AV Canal Defect and probably has Down Syndrome, but the other kids will be popping in here and there because they would never let us leave them out and because they are special gifts from God too!
So to get this started .....

I was 21 weeks pregnant and went for my first ultra sound. I am told... It's a boy. Then later that day my midwife calls and says the heart doesn't look right you need to go to our Clarion North in Carmel IN and get further testing done so...

2 weeks later...
We went for a level 2 ultra-sound , a fetal echo-cardiogram and to talk to a fetal cardiologist on Friday February, 11 2011  and this is what we found out.
Our unborn son has a BIG hole in his heart or technically ...AV Canal Defect.

What is AV Canal Defect?
Atrioventricular (AV) canal defect is a large hole in the center of the heart. It’s located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles). This septal defect involves both upper and lower chambers. Also, the tricuspid and mitral valves that normally separate the heart’s upper and lower chambers aren’t formed as individual valves. Instead, a single large valve forms that crosses the defect in the wall between the two sides of the heart.

What causes it?
In most children, the cause isn’t known. It’s a very common type of heart defect in children with a chromosome problem, Trisomy 21 (Down syndrome). Some children can have other heart defects along with AV canal.

What can be done about the defect?
An AV canal can be fixed. Open-heart surgery is needed to repair the defect. Unlike some other types of septal defects, the AV canal defect can’t close on its own. Medicines may be used temporarily to help with symptoms, but they don’t cure the defect or prevent permanent damage to the lung arteries.
The surgery will need to be done in the first year of it's life, most likely between 6-9 months.

What will my child need in the future?
After surgery your child must be examined regularly by a pediatric cardiologist. More medical or surgical treatment is sometimes needed.
Surgical repair of an AV canal usually restores the blood circulation to normal. However, the reconstructed valve may not work normally. The valve structures can leak or narrow. But, for many children, the long-term outlook is good, and usually no medicines or additional surgery are needed.

Because of my age and this defect we are looking at a 50/50 chance of him having Down Syndrome.
We would not allow them to do the amniocentesis because it will not make a difference to us weather he has DS or not, he is still our son and God chose us to care for him.
So we will not know for sure about the DS until he is born. The only definite we have is the AV Canal Defect.

We go back to have the level 2 ultra sound and fetal echo done again in 4 weeks.
I will update any new info then .
Also if anyone has any questions please feel free to ask and I will do my best to answer them.
In His name,
Ginger