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