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Sunday, June 28, 2009

Means of Communication

So, although the video does not do him justice, we just had to share with everyone. Yesterday, Dad noticed that Isaac was "talking" to him. Ernest would talk to him and Isaac would move his mouth and make clicking sounds. I guess because his vocal cords are still paralyzed and can't make much noise, he found other means for making noise. So today, Dad was singing to him and I don't know if you'll be able to hear him but we tried to catch him. It's also like he knows when I'm using my camera. He always looks a little freaked out.

Oh, if the blog music starts playing, scroll all the way down and hit pause before you try to play the video. Otherwise, the music and the video will play together.
video

Isaac is still doing well. He had finally started back on breastmilk today and we'll have to stop his feeds again tonight. He's got his heart catheterization scheduled for late morning tomorrow. After that procedure, they'll let us know a closer date of taking him home. I'm thinking by next weekend or right after next weekend. That's really all I have time to post today...maybe a little more tomorrow after his procedure. God Bless all tonight!

Saturday, June 27, 2009

4 Months Old

Well, Isaac turned 4 months old yesterday. He finally had his g-tube surgery two days ago after waiting all day for it. They stopped his feeds at 4am that day and he had to wait all day without food. He had his surgery at 7:30pm and was finished within the hour. He did excellent. They were able to take the breathing tube out in recovery...what a trooper! Yesterday was a very long day for all of us. After recovering from his g-tube placement in PICU, they moved him back to the 15th floor. His surgeon requested that he still not have any feeds or liquids until this morning. So, Dad and I took turns holding him all day yesterday. He wouldn't even sleep for an hour at a time. So finally after what seemed like forever, this morning (at 10am), he was finally granted some pedialyte. I think he'll sleep pretty good today. We'll continue to work with him on mouth feeding but it'll probably take awhile. He also had his first physical therapist come to see him a few days ago. We learned how to help stretch out his neck for him to be able to move his neck on his own and how to help him start holding his head up. After the G-tube placement, we're one procedure closer to getting him home. He's got to have a heart catheterization to get his IVC ballooned. Its supposed to be a simple procedure but will still have to be put under that is scheduled for Monday. Please pray that things go well and that we can get our buddy home.

Physical Therapy





Post G-Tube: No tubes on my face!!!







Monday, June 22, 2009

Look Mom, Nothing's Holding Me Down!!!!

Yesterday, when we came in from cleaning our old apartment, we noticed that he was off of the monitors. They have oficially moved him to acute care rather than step-down ICU. Last night was the first time we were able to hold him without the monitor wires. We held him and walked around the room just because we could. It was wonderful. He still has the pulse ox probe on, but they only plug it in to check his vitals every 4 hours. Of course he also still has his picc line and they still need that to put one of his meds through IV. We took some cute pictures this morning down below. Notice him sporting his first "converse!"

On another note, we are so proud of Seth and Amy for being representatives in Oklahoma for their son Logan. If you haven't already, please visit his blog and watch the interview. You did so great, Amy!









Sunday, June 21, 2009

Happy Father's Day!!

Happy Father's Day to all those hardworking dads out there. Dad wants to thank all that texted him today, and here is his message to you......


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Sorry, sometimes our texting is blocked. We can usually receive but sometimes it won't forward or send messages.

I think Dad had a good Father's Day weekend. Although, Friday was busy with moving and all, Eli also came this weekend. We were able to take him to the Houston Aquarium yesterday. We all had fun!







So, that's about it....




















Oh wait, I suppose I have to give an Isaac update right? Isaac is doing awesome and a step closer to coming home to our new apartment. There is one main thing holding him back at the moment, and that's the feeding issue. Occupational therapy comes by every day to work with him and us, and he seems to get better every day. He just forgot how to suck and is trying to bite instead of suck. Even if he does learn in the next few days, he will probably not be able to take his whole feed. He will still most likey go home with a g-tube. Yes, it is another surgery but not near as risky as his other surgeries. Tomorrow, he is going for a swallow study. Because his vocal cords are still paralyzed, they want to rest assure that any liquid that goes down his mouth will not go to his lungs instead of his stomach. They will see whether he will need thickener for his milk or just straight milk when we go home. Then, even after all of that, he will need to go in for a catheter procedure to balloon his inferior vena cava (IVC) because it is getting smaller. Getting blockages in the veins is not necessarily a bad thing, but because he will need this vein for future heart biopsies, he has to get this done also. Doctors are saying that if all goes well, we could be home in less than two weeks...!!!! So, we've got three procedures that he has to do...a barium study, g-tube surgery, and heart cath to balloon his IVC. I won't even tell you how many meds he's on at the moment, because some are getting weaned down, and some he won't need when we go home. That's about it for now. We're anxious to see what the results for the swallow study are tomorrow. Pray that things go well. God Bless all. Here are some smiles for you to enjoy.





Wednesday, June 17, 2009

Bragging Rights

So, I think we have the right to brag a little. I wanted to show off some of the handmade blankets for Isaac. My mom has sewn many a blankets but she also crocheted one. Here's the one she made.



I love it because its so thick and the color scheme is perfect.

This is the one that Dad crocheted. Yes....Dad did it!!!! I love this one because its so big and soft.



And here's the one I was finally able to finish. I don't crochet or knit, but I love to cross stitch. The blanket is just a piece of fabric that already has squares on it and so I stitched the characters and finished it up with Isaac's name and the fringes on the edge.



And how about a picture of my little man. This is right before bedtime last night.



Monday, June 15, 2009

"The Floor"

We have moved in with Isaac...to the 15th floor at least. He has been moved to his own private room, and looking so good. This is a step closer to getting to take him home (to the apartment). A week and a half post-transplant and we can't believe that he is not in ICU anymore. He was extubated just two days ago and most of all his tubes and lines were taken out yesterday. He's got a central line (IV line), nasal cannula and of course his breathing tube. Since he was extubated, he's been trying to cry and we can't hear him. They tested his vocal cords and found that there is partial paralysis. It'll take awhile to heal but that in turn causes him to be here longer to be able to learn how to eat again. He can't start learning how to eat until his vocal cords get stronger. So, they'll slowly start to work with him on non-nutritive sucking to get him to remember how to eat. Other than working on getting just the right dosages on his transplant meds, the doctors' main goal is to get him to start eating on his own again. We really hope that he does, because if not, he'll have to have another surgery to get a g-tube in place. Let's pray he learns to eat. Other than that, we will just take it day by day.

This is already a busy week. When we heard that they wanted to move Isaac down to the floor, we had to get busy packing to move up here, and also had to start packing up some stuff to move to another apartment. We'll be moving to a 2-bedroom this Friday, or rather Ernest will probably be finishing up the packing on his own. We'll have Bryan helping him transport from apartment to apartment. Whew...so glad we know at least one person here. On another note though, my mother-in-law will be bringing Isaac's crib and also might be bringing Eli. We can't wait to see him again! Soon, we'll all be able to "live" at our apartment all together again.

So, not much else to report, except that Isaac can finally get dressed up in his many clothes that he's almost outgrown. We gotta change him almost every few hours to get good usage out of all the clothes. Poor Isaac!!! He's momma's babydoll!





Thursday, June 11, 2009

Post Transplant Update

Sorry for such a long wait on an update. Isaac is still doing very well with recovery. We are just taking it day by day and not wanting to rush. We're also getting stuff packed and ready at the apartment. Because we anticipate that Isaac will be able to come home in a few weeks, we're in the process of packing up and moving to a two bedroom apartment. For one, it'll be more room to have both boys with me and two, no more cigarette smoke coming through the vents. We hated coming home to a smoky apartment. God is great and loves us so much. It just so happened that this DOWNSTAIRS 2-bedroom apartment became available right when we needed it. People were calling and inquiring about one right when we were signing the lease. Its in a much better location of the complex and has a very pretty view with a shady tree. So, while we give Isaac a chance to recover and rest, we'll be busily packing and moving getting ready for him to finally come home. After his transplant, because it took so long, he was extra puffy. So the last few days have been spent getting the extra fluid off of him, and he looks so good now. We came in this morning and his chest tubes were gone...Yay!!! 2 less tubes and closer for us to hold him again. Right now, he's got a Picc line (long term IV), an arterial line (to better check pressures), a dialysis line (for extra fluid drainage), and the breathing tube. Doctors are already doing volume support trials to get the breathing tube out this weekend. We're so happy about that. But like I said, we're not rushing. We'll be ready when he is. More pictures will be coming soon. You thought he looked good before, wait till you see him now.
Hopefully, we'll be able to take him to the apartment within the month. And when we do, it'll still almost be like being at the hospital. Isaac has to be in almost complete isolation. We even have to limit the visitation of family. For those that don't know about transplants, for the first months, Isaac has to be on medications that suppress his immune system so as to not reject his new heart. He has to away from germs as much as possible, because it will be hard for his body to fight off an infection or virus.
Eli went back home with Grandma this weekend. After two weeks, he was ready to "go back to my house. He was actually asking Grandma to come pick him up. We don't blame him. What kid would want to be at the hospital everyday? Soon enough...we'll all be able to come home.
God Bless all that pray for Isaac. Please keep praying for the donor family also. We are indebted to them. Thanks


Sunday, June 7, 2009

Recovering

Isaac is doing well and already wanting to move around and wake up. They are working on weaning the vent and getting all the extra fluid out of him. He is looking so good with saturations at 100. He almost looks like a different baby. The surgeon is hoping to get some of the tubing out tomorrow. Let's pray that it happens. No rush though....he's gotten over a big hurdle and needs to get stronger to get over any more that are ahead. We took many pictures of him the day of his surgery before he went in. We've taken quite a bit after his surgery but the only one we are willing to share is a pictue of his foot. I don't know if anyone but us can tell the difference, but he is PINK.

Its difficult to think about, but we keep thinking of the donor family and their enormous generosity. We haven't gotten to find out any information that they CAN give us about the donor (race, and gender). I wish there was some way we could help as much as they've helped us. If I could give them everything we had, we definitely would. There are no words that could express how we feel right now. Its sort of a bittersweet moment....

Pre-Transplant




Post-Transplant



Saturday, June 6, 2009

Angel Heart Birthday

I'm almost speechless... When we could finally see Isaac(at about 10 this morning), he looked so good...his fingers, toes were PINK and no longer pale white or blue. He is still doing awesome and already trying to wake up. They are also starting to already wean the ventilator. Sure is a fighter. Sorry update so short. Typing on a very small keyboard.

Out of Surgery

Isaac's surgeon just finished talking to us and Isaac is out of surgery. He said that as complicated as it was to do his transplant, he is very pleased at how it turned out. It'll be a couple of hours before we get to see him, so we're gonna go home, take a shower and come back in time to see him.

2:10AM UPDATE

His new heart started BEATING at 1:16am. My next update will probably be after or while they are closing him up. Thanks to everyone for listening to our ramblings and keeping him in your prayers.

1:00AM UPDATE

The last update we got was that Isaac's heart is out and the new one is in. Of course they aren't done yet...the rest has to be sewn in. Another hour closer though.

Friday, June 5, 2009

Ramblings

So, while we're here waiting for updates on Isaac, I'm finally getting a moment to really think. It gets me thinking of the generous donor family that is giving my son his life back....absolutely selfless and we will forever be grateful to them. May God keep them strong through this difficult time and let them know that their child will live on in Isaac. This moment is so....surreal. I feel like I'm dreaming....

We have also just gotten another update. The surgeon is still working on getting his heart out. They have to remove the stents and bands that they had placed on his first surgery, so it will be a little longer than just taking out his heart and putting in his new one. The nurse coordinator also said that she saw his new heart and "it looks perfect....as big as a big strawberry."

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UPDATE 3

Isaac's chest has been opened and the surgeons are working on getting his heart out to replace. They also said that his heart is here!

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Update 2

Isaac was taken back at 5:00pm. They'll come and give us updates at about 6:30. There won't be much to tell because that will be at the point where they are administering anesthesia and putting the lines in him. I'll update as they update me.

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UPDATE 1

Isaac will be taken to the OR at approx 4. Ughh.. The hours r dragging...thanks to all of u praying for him today.

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THE CALL

Sweet Jesus...Our prayers have been answered..they've got a heart for Isaac. Surgery will be some time after 3. We don't know much more than that at the moment. We are still trying to get to the hospital. I'll keep updating as we know more. Please keep him in your prayers today.
God Bless you all!

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Tuesday, June 2, 2009

All Smiles!

Isaac is still doing very well. He is still off of the ventilator but doing C-Pap therapy for 2 hours every 6 hours. No problem with that....no rush little man!! So, we've gotten to hold him, play with him, and took some pictures while we were at it. He is still active for transplant and is staying at status 1A until he can get a heart, which is great because he is still first in line in this region. Not too much else to report, except that if he keeps doing well, he'll be moved to a private room sometime soon. I don't know if we can say this enough, but thank you EOG....thank you thank you for setting up these great fundraisers for us. I know it'll really help in the long run. Thanks also to our family helping with the fundraising and thank you Exterran also. I know many more companies are involved in helping us out and really...thank you is not enough. You are all in my prayers. God Bless!

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and how about a smile.....


















wait for it....











A Dedication to the Angel that gave me my new heart!

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