Day 71

The big news today is we're moving to the floor... Let's hope that everything works out this time, and we can stay there! Holden still seems to be feeling about the same, a little out of sorts but nothing huge. He's still throwing up quite a bit, but that's probably due to his stomach being stretched more than it's used to with the bolus feeds. We're going to keep them the same today and see how he adjusts (if he adjusts).

His xray looked a little better- not great, but better, so maybe the new diuretics are working to get some of the fluid out of his lungs. With all of this going on (the sweating, need for increased diuretics, etc), the doctors say that we're going to have to start working to manage chronic heart failure better than we have been. That makes the need for a new heart a priority for him. We don't like to be reminded that no matter how good he looks, his poor little heart is still broken, but reality has a way of setting in. We hope to keep him comfortable, and manage the heart failure effectively until that happens... Please pray for continued progress for Holden, and no setbacks once we're on the floor!

It's really hard to pray for a heart for him, because that means another momma's arms will be empty. It's heartbreaking no matter how you look at it. But it's also the most precious gift a family can give, and we pray for the perfect heart to be generously given to him in His perfect time. We already know prayers are answered... We are reminded daily that he is a miracle!

Day 70

Following the relative calm of the past few days, I should have seen a few dark clouds ahead... Holden's not really worse today- nothing I can put my finger on- but he's not the same happy baby he has been recently. He's throwing up more, hopefully just due to the bolus feeds and nothing more sinister, and just doesn't seem to feel right. His chest xray was hazier this morning, which is never a good sign in Holden's world. It wouldn't be so worrisome if we weren't aware that he's prone to flash pulmonary edema, and we can usually see it coming on the xrays before he shows any physical symptoms. We're going to try a different diuretic in addition to the three he's already taking to see if it helps any. I really pray that it does, especially if they're going to try and send us to the floor this week. They have a lot of sick babies out there who need to be in here, and Holden looks like a pretty good candidate to be moved to make room. He may be sick, but there are babies who are much worse off than he is... So we're just going to have to trust in different doctors and hope that they can continue moving forward with his progress. I really wish we were in a better place before being moved, but we can't predict everything. Maybe his lungs will respond appropriately and dry out, and his xray will look crystal clear tomorrow morning. That probably won't happen, but that's what I'll hope for. :)

(And I asked if anyone made haircutting house calls on Facebook yesterday... From the responses I got, you all thought I was kidding. The poor kid needs a haircut, no joke! Look at the pictures- does that hair look like anything to joke about?? :)

Day 69- Nothing to add, so you just get pictures :)

Day 68

Today is my baby girl's twelfth birthday... I can't believe how quickly she's grown up, and become such a beautiful young woman. It's always a surprising gift when you can look at one of your children and realize that not only is that your baby, but they are someone who you actually like. She is amazing, and I am so proud to be her Momma. :)

While she (hopefully) has a fabulous birthday with her Dad, we're still in the ICU. The doctors want to sort out some of Holden's feeding issues before we go up to the floor, so we'll be here until at least Monday. We're going to try what they call bolus feeds, where he's fed a larger amount at one time through his tube instead of small continuous feeds. That's how the stomach works in normal babies, and we hope to have him back to normal- or some version of it- soon!

Day 67

We're still holding the course, which is always a good thing in here. Holden's going back and forth between being really happy (the happiest he's been in here, I think), and suffering from a little bit of withdrawl. We're still holding off on cutting any more from his meds, since we made such huge cuts earlier in the week, and he seems to need a little more time to adjust. He's back to not sleeping at night, which sucks, but shows us our baby is getting back to normal again. I have to remember that the lack of sleep is something we've prayed for!

He's been off of the oxygen support since yesterday evening, and he's still holding his own. His chest xray looks to be clearing up too, so hopefully he can keep up and keep the tube out of his nose. Everyone is still in the dark as far as finding out why the flash edema happened to begin with, but at this point the best we can do is watch him closely and pray that it doesn't happen again. Of course, I'll be a nervous wreck for a while, waiting for it to suddenly appear again... Finding out the cause would help to calm my nerves, but we can't always get what we want. That's one big lesson learned on this journey!

The only big change we're making today is moving his feeding tube into his stomach, which just happened. We still aren't sure that he's ready for this, but I'd rather they make the change here than up on the floor. Hopefully he'll tolerate feeds NG, and we won't have to take another field trip to Floroscopy to have it put back. It's so terrifying for him, and he's not nearly as sedated as he was before.

Speech therapy has been working with him to overcome his oral aversion, and this morning he ate two Cheerios all by himself. It seems like such a small thing for an eleven month old baby to feed himself two Cheerios, but for him it was a major step! Our hope is that he will continue moving forward, and take more of his nutrition by mouth... It's going to be a long road, but once he reaches his goal, we can say goodbye to the feeding tube, and get the last of the tubes out of his face.

They're talking about moving us back to the floor tomorrow, provided everything goes well with his feeds today. I'm going to love the relative peace and quiet on the floor (compared to the ICU), but I'll miss the level of care he gets here. Not only are the nurses and doctors here the best, but they know him so well after all of the time we've spent here. That makes a huge difference, as we found out last time we were on the floor and got demoted back to the ICU. Maybe this time they'll listen to us up there when we tell them something is wrong. :)

Day 66

I don't have too much to report today, but I've noticed people get antsy when I don't post for a day. :) We're going to try Holden off of oxygen support for a little while this evening, and see how he does on room air. If he passes that test, he'll have one less tube in his nose. We're also talking about trying to feed him NG tomorrow. (He'll still be fed through the tube in his nose, but the tube will be in his stomach instead of his intestines.) Nobody seems to be sure if he's ready for it or not, but we're not making any progress by waiting, so it's worth a shot. He's not as happy today as he has been, and he doesn't seem to be feeling well. He's showing a few symptoms of withdrawl, so maybe all of the cuts we made to his meds are catching up to him. We'll most likely leave them alone for the next day or so to let him adjust before we make any more massive cuts. He was up most of the night with abdominal pain, but seems to be doing a little better now... Hopefully he's past the worst of it!

Day 65

Holden's status is largely unchanged today... We decided to keep most everything the same, since we've made so many changes in the past few days. The only big change we're making today is going up on his feeds through the tube, hopefully to full feeds by tomorrow morning. We got him to take a few bites of banana baby food earlier, and he seemed to really enjoy it. It doesn't seem like that big of a deal, but in the context of his situation, it's huge. :) We may never find out what happened to cause all of these issues the past week, and I may have to be satisfied just knowing he's improving. It's frustrating, but what can you do??

We also have a prayer request for another family here... Emma is three months old, and she is another "puzzle baby" like Holden. Her parents have been trying to get her listed for a transplant, but they're hitting some speedbumps along the way. Please keep Emma and her parents in your prayers as well.

I've included a ton of pictures below, as promised...

This is what Trent does for fun in here... Poor baby.

Another wagon ride, before he got sick again last week.

Playing with Uncle Cody

The bed he switched to on the 8th floor... It looks like a monkey cage.

Sleeping with his seahorse again, he loves that thing!

Kaitlyn's favorite gift this year, a Kindle from Uncle Cody.

Rylie was pretty excited about her gift from Uncle Cody too.

They are loving scarves this season.

Such a little ham!

She wanted to get these Granny reading glasses... I vetoed.

They got their faces painted at Grapevine Mills on NYE... They felt very cool.

Poor Cody.

Playing with Holden before we went to the hotel on NYE.

While we went to the hotel, Holden had his own little party in the ICU. Left to right- Lane, his doctor; Brian, one of our favorite nurses; Jeremy, one of our favorite RT's.

 I love Holden's face as he's looking at Lane in this one.

The girls waiting for the fireworks to start. We had a pretty decent view of downtown Dallas out of the window.

At the Rainforest Cafe. They didn't want to leave!

Kaitlyn's flamingo...

And Rylie's tree frog. (Sitting in a heart, not a tree, per request.)

At the ICE show. So cold, but so fun!

Silly Rylie.

I thought this was appropriate. :)

The face I woke up to this morning... Love it!!!