Happy Birthday to Kaleb!

What a great day! Family, cake, presents, and best of all- Kaleb turned 1! We're so proud of him and love him more than words can describe. Today's been a day for happy tears...and those are so much better!
Just a couple fun pics from today!
Pic 1-Mama and Kaleb sleeping a little longer!
Pic 2-Kaleb really enjoyed his cake!

One day, one hour, one minute at a time,
Jenifer

GETTING READY TO GO HOME

It's been awhile since I've updated the blog.  If you want more day to day stuff please friend us on facebook with a subject line of blog follower. 

Kaleb is currently still in the hospital and is doing great!  He got off oxygen on Saturday and we're just trying to get his feeding undercontrol.  From a cardiology stand point I would say that we have won, or made it to the finals!  Everyone is so pleased at his recovery and process.

Once we're out of the hospital it looks like we'll have a birthday celebration and then another surgery to fix his malrotated intestines.  Once recovered we can then really see where we are from an eating standpoint.  It is the single item that he is the most behind.   More on that in a couple of entries.

Please also start freeing up your calendar around the 20th of October.  Childrens has their Red Baloon Run and Ride fundraiser event.  We are looking at creating a team and donating all the money to the Save at Home Program!  More to come!!

Thats about all the time I have.  Spent most of my lunch hour adjusting the layout... :)  us architects!
Anyway, attached are a couple photos from this past weekend. 

Enjoy!



I went to restroom, heard "clank" and walled in on this...... LOVE IT!

Showing off my 2 toothies

Using the bed as a snuggle buddy while trying to go to sleep!

I got this helmet and bumpo thing all figured out!

Drummin!

Taking an much needed nap during boys weekend!

Sunday morning

It's been a couple days since I posted. First off, the little K man is doing great great great! We moved out of the ICU on Friday and are in room 266 on the 8th floor. Our usual room ;). We seem to get this room a lot! He lost his IV on his head the first night we were on the 8th floor. Yea!

He has gotten his days and nights a little off. Friday and Saturday nights were a little rough. I also think that he was a little scared because he would wake up and not know where he was. But I do think he knows he is out if the ICU and is much happier! Again our parents are great and we got to go home for the first time yesterday! Sleeping in your own bed is sooooo nice! Jenifers parents are coming up today and we'll be going home again. Jen may take a nap but I think I'll stay up. Want to get to sleep earlier tonight because I have to go to work tomorrow. :(

One big highlight was on Friday we graduated from the "safe at home" program! Kim made us some sweated and dr nugent even helped with the delivery! Such a huge huge mile stone for us!!! No more quarantine!

As of rounds today, it looks like we will be here for at least another week. Kaleb needs to get weened off of oxygen and get off continuous feeds. We're very very use to this process and we know it can take a little time. Our goal is to be home for his one year birthday which will be the 29th of this month!

Again, thank you all for the thoughts and prayers!!

Wednesday

Last night was not as smooth as we had hoped for. Kaleb lost his IV and he's a very hard stick. Needless to say after 4 Attempts from the IV team we still did not have an IV which we really need to give medicine through. Luckily we have one of our fav nurses and she was able to get someone from NICU to come down that was good at IV's. Because kaleb was pretty much a pin cushion the only place for an IV was on the forehead. Yea it's weird and not the first time kaleb has had an IV there. Only bad thing is that they can't use any pain meds to insert the needle.

But this morning all was great because he finally got his drain lines out. It's one of those things that you still don't get use too and can't believe how much is in him. He did get some yummy pain meds but still cried through the procedure.

I can't complain about he afternoon either. The boy took a 2 hr nap in my lap! Ohhh how great that was!!!!

We still have some oxygen levels which may cause a more extended time in ICU. But his smiles make everything go away.

Tuesday update

It's been a couple of days. My last post was written over 2 days so it might have been a little confusing. Really doesn't matter. Kaleb is doing better and we're on a good road to recovery. We're still in the ICU and it doesn't look like we will be leaving for a couple more days. Kaleb still has his drain lines in and on a drug that helps his heart (do detailed to explain). Unroll we're off the drug and lines pulled out we will not be leaving ICU. I hope it's the end of the week if we keep trending in the direction we are right now.

Mom and dad are doing ok. Both of us were pretty tired today. Last night was not peaceful. Tonight looks better. The stress over the weekend is still lingering but more thrilled that kaleb is doing better! However, he has thrown up 5 times today and both mom and I do not want to go down that path again. Hopefully it's just an echo from his body trying to get use to the new flow!

Both of our parents have been a great help this trip. We love and appreciate all that you do for us! Sometimes we don't say it enough while we are here. Last night jenifer and I counted up all of our beads of courage and we have over 800 beads! Looks like we'll it the 1000 mark after this surgery.

Again we can't thank you all enough for the prayers and thoughts during these tough times. I still think to the poster jenifer showed me right after kaleb was born. "you don't know how tough you are until you have to be". It's very true and I'm glad that both jenifer and I have such living families and friends to let us lean on when it seems too tough! As jenifer would say: one second, one minute, one hour...

Post Glenn

Kaleb is doing very well! They took the breathing tube out earlier this evening. Seemed early for me but what they're saying to us is that the kids do better with it out. As most of you may know, this is the first surgery that changes the pressures in his circulation. The blood flows slower in is head then before. This is causing kaleb to be in a lot of pain, however the pain meds can slow the breathing now which is also very painful. We're in pain management mode and it looks like it will be a long night. It is very hard to watch tears flowing out of your child's eyes and there is nothing you can do about it. We've been told that it takes the body a couple days to adjust to the "passive" flow. Many of the nurses and doctors here say this is the worst of the three surgeries. So far kaleb is going in and out of pain spells. It looks like its going to be a long night for us and some shifts may be in order. Other than the pain everything else is great! Bleeding is slowing, labs are good, and oxygen levels are mid 70's. They drop below 70's during his pain spells and needs extra oxygen help. May sound a little bad but we're following the textbook right now and we may actually get some central lines out tomorrow.

Thanks again to all that have prayed and thought about kaleb today! Miracles do happen and you're all part of this one!!

Glenn surgery #6

We got to see the little one about 30 minutes ago. He looks better than great. We'll probably be able to go back to see him shortly.

Glenn surgery #5

Just got word that everything is completed and all repairs are holding. So we're basically done with surgery. Now they are in the process of clotting his blood, getting off bypass and possibly closing him up. Yea!!!! Such a success!!!! Looks like we'll get our first drive by look in about an hour or two. Dr. Forbess is such a great surgeon!

Glenn Surgery #4

Finishing one side and should start on the other side shortly. There is still a lot to do and probably a couple more hours till we get to see him. So far all is well and still moving along smoothly!

Glenn Surgery #3

All is still well. On last post I said they started. That was just cutting open and getting on heart lung bypass. so I was a little premature. Right now they are dissecting through the scare tissue and trying to re-figure everything. So all still as planned. Forbess did remove the stents already. We asked to keep them, but it looks like they will go toward research. I think we're getting a picture though! ;)

Glenn Surgery post #2

Got a call at 8:45am and they have already started the surgery. All is well and he's doing well!

Glenn Surgery

The little man went back around 7:30am. Same anesthesiologist as last time, who we requested. So far everything has gone as scheduled. They putting access lines in and getting him set up on the heart lung bypass machine. It will probably take 1-2 hours before the operation begins. And before we get an update. Thanks to all for wearing your shirts and praying for us.