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
Tuesday, June 28, 2011
Monday, June 27, 2011
Friday, June 24, 2011
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.
Thursday, June 23, 2011
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!
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.
Tuesday, June 21, 2011
Friday, June 17, 2011
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.
Tuesday, June 14, 2011
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!
Sunday, June 12, 2011
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.
Saturday, June 11, 2011
Thursday, June 9, 2011
Wednesday, June 8, 2011
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
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
Monday, June 6, 2011
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