Up to the 9th floor!

Landon had a good day, he got moved up to the CPCU just like we expected and did pretty well the rest of the day, except for being upset for a while this afternoon. He got a private room which is nice cause it's a little quieter than the open space of the CICU. He's starting to act pretty hungry and while the nutrition he's getting through IV will help, he'll still feel hungry which will be hard since we can't feed him for several more days.

So when he wakes up, he seems to do so with a vengance, whether it's due to hunger or pain. Now the only thing he's on for pain is tylenol as needed which is good.  His scar from surgery is looking better each day but it's definitely a reminder that but our 12 day old has been through open heart surgery!  It's also a reminder that God brought him through surgery and continues to heal him.  He's only got one thing on his face now, a tube in his nose, which might come out soon. This is down from 4 (just on his face) so he's starting to look more like our sweet baby again. I'm sure I said that before, but it's so nice to see him get closer and closer to "normal" looking again.

No plans to change anything else that we know of, just trying to get him to sleep as much as possible so he can continue to heal!

A Room with a Different View

Landon had a great day and night yesterday. He got several more lines out, including catheter, 2 of his IV lines, breathing cannula, and several more things. He's down to just a few meds, a tube to draw the acid out of his stomach (since he's not eating right now) and the monitors.

He's been such a trooper through this whole thing and we're happy to see him much less tethered and looking more like our sweet baby again! He's really enjoyed being swaddled and held the last few days and we've enjoyed getting to hold him! The nutrition they are giving him should meet his needs but doesn't fill his tummy so he'll still get hungry until we can feed him again, but we're told not as hungry as he would without the IV nutrition (TPN & Lipids).

We just heard that they are probably going to move him from CICU to CPCU (Cardiac Progressive Care Unit) today. This is a step down in the level of care because they don't feel like he needs intensive care anymore (YAY!) This means he will no longer have a dedicated nurse (They've had him at 1:1 with a nurse since surgery) but it also means he shouldn't need it and that we'll have a private room, which will be nice. Where we are is a pretty open floor that has curtains that separate some of the units so it will be nice to have a barrier to other kids crying and other monitors alarming and stuff.

Some of the grandparents are headed back home today but my (Allison's) mom is staying with us for the time being. It's been so great to have them here and let them meet their grandson! He is the first grandkid in my family and the 2nd (but the first boy) on Gary's side.

We are thrilled with how well he's done these last few days. He's like superman- leaping multiple heart meds and IV lines in a single bound! :-) Really we know that God's hand has been on him and has given him the strength to endure all of the pain and frustration of the last 5 days. We know that the Lord will continue to provide him the strength to handle the recovery and future surgeries. Thanks for all of your love and support- it has meant so much to us that there are literally people all over the world extending their love and praying for our son!

Breathing Tube is Out!

Making some progress today. Landon finally got the breathing tube out this morning. Mom is holding him as we speak. We will post pictures later. Overall he is doing much better but still has a very long way to go. Due to an inflammation in his stomach, which they are treating with antibiotics, they said he won't be bottle feeding for 7 more days! They are giving him lipids and other things through an IV to sustain him until that day comes, but it is going to be real hard to wait that long before I can feed our little guy.

Mom is much happier this morning. Holding him changes everything. We can finally hold him and comfort him some. Plus his cuteness went up again without that big clunky tube shoved down his throat. His right arm is like IV central. He has 3 IVs right now in his right arm.

Please continue to pray for his recovery process and that his saturations and breathing continues on an excellent course. Thanks for your support! Pictures will be posted later of momma and Landon.

Turning a corner

We got a great report from Landon's night nurse, who we had 2 nights in a row and was amazing. She said he did well all night and remained very stable. The only thing they are kind of worried about at this point is his stomach. It has been a little swollen since surgery and Landon is showing signs that it is tender. They have done several x rays and it looks like his intestines is a little inflamed on one side.  They have been giving him an antibiotic as a precaution and they said that since feeding by mouth could worsen the problem they won't do that for 7 days. They'll continue to watch it by x ray and hopefully between time and the meds it will heal up ok.

It has been auch an encouragement to see him so much more comfortable. He's had his eyes wide open for a while this morning and while he still looks a little confused, he's not looking like he's in pain or discomfort like he was yesterday

So good report overall, this intestines thing could delay his discharge since they'll want him eating well before he leaves but that's ok. We're just glad to finally see him steady and comfortable!

A little bit encouraged. . .

We're heading back to the ronald mcdonald house for the night and feeling a little encouraged that things are looking a little better for Landon. It seems like they finally found the right combo of stuff to have him on that balances out his stats well, so hopefully he'll be able to rest well tonight and then they can gradually start to take him off of things one at a time. It's so nice to see him a little more relaxed, even if it means he's on a morphine drip right now just to let him rest and not have his pain spiking like it was. Thanks for your continued prayers. We'll be able to sleep better knowing that he's finally more stable.

Romans 8 Shed Some Light for Me

Allison just posted and I agree with everything she just said, but I am understanding more every day.  While reading Romans today I found an interesting perspective that I can relate to now.  God sent his only son to die for us. 

Our heavenly father does know what it is like to go through excruciating pain while seeing his son suffer and knows that it is part of his plan.  Many, even the apostles, did not understand why Jesus had to die at the time and felt abandoned. 

We are resolving to take it one day at a time and let God reveal to us why this happens instead of our instinct to exclaim why him and us.

Gary

Slow and Steady

Today has been a very difficult day. Landon is still hooked up to a million wires (including a respirator) and they've been trying to get all his levels balanced all day long. Between his heart rate, respiratory rate, CO2 level, oxygen saturation, etc (those are only the ones I know, but there are others too) they haven't found that magic mix of meds and everything that will make everything happy.

Landon has been pretty "active" today but it's usually because he's showing signs of discomfort. It's been excruciating to see him flinch, grimace and try to cry (although it's not audible because of the breathing tube) and not be able to do anything to help him. We can't tell of course if he's in pain, or scared, or frustrated or what. They say that they are doing pretty well with managing his pain, and they have some interesting methods of determining pain cues, but it's just hard to know with such a small child.

We had hoped he would be able to come off the respirator (and get his breathing tube out) today but since he hasn't made much progress I'm not sure that will happen. It sounds like once they can do that he will be able to progress a little bit more with recovery since they'll be able to do some feeding by mouth, etc. I think Gary and I both feel pretty helpless since we can't really do anything for him. We can try and provide some comforting touch but that's pretty limited since there is so much stuff on him and since he's so sedated, it's hard to know if it really makes a difference. I've been trying to talk to him some just so he can hear my voice and hopefully be reassured by that.

I was telling Gary that during this whole process ever since we found out about his heart defect I haven't ever really had feelings of "why us? Why do we have to deal with this?" but in the last few days I've been feeling "Why him? Why does he have to deal with this and go through all this pain and confusion?" It doesn't seem fair- he's just so small and helpless. I know God holds him in His hands and that the Lord has a plan for him. God knows what he's going through and he has a reason for it, but that doesn't make it easy for us or him right now.

We also are both aching to hold our baby boy- the last time we held him was yesterday before surgery and we're not sure when he'll get enough stuff out that we can hold him again. He almost seems like a different baby right now just because he looks and acts so different. Anyway, not trying to dump our emotional burdens, but want to be real about what we're facing right now. I don't have time to journal AND do the blog so I think this will have to serve as both!

Thanks for the continued support- we love you all!