One Week Down...

I can't believe it's been a week since Stevie's diagnosis. Sometimes it feels like we've been at the Children's Hospital for months. The days go by fairly quickly, but progress feels slow. Some days we see no improvements and its easy for a mother to get anxious because I want to see him well right away. So I have to keep reminding myself that he just had his chest cut open 6 days ago! The kid will need time to feel like his old self. Although now I'm seeing signs of him coming back, so it's very reassuring. And when you think that its been just under a week, its a miracle he's come so far.

The big news yesterday was that Stevie got extubated - which means they took the big breathing tubes out. (I'm learning lots of new big words every day...) And his vital signs look fantastic! We are really thrilled about that. Once they pulled the tubes out, it was so nice to see his face again! It also meant that I got to hold him. We posted pictures of that all over Facebook, it was just such an exciting moment! After watching him lay in that bed for six days, not being able to comfort him, it felt so good to have him in my arms. I'll be honest, when I first picked him up, I felt like he was a different baby or something. Not only did he look different (his face is still REALLY puffy from his surgeries and all the fluids they've given him), but I'd missed almost a week of bonding time and babies just change so quickly. I didn't have the immediate warm fuzzies I expected to. And I was nervous handling this new little person. It really disappointed me and I felt like a terrible mom thinking I'd have to get to know him again. But after a few moments of staring at him and inspecting every inch of his little body, I started to remember. He smelled the same and when I kissed those little lips over and over, there was no denying he was mine.

Today has had some more success, as he has started eating...kind of. It's been a little bit of a battle. It takes him a really long time to eat even the tiniest amount of food, when before he could eat like a champ. We will keep practicing, but sometimes it gets frustrating, because I know he's hungry, just doesn't quite remember what to do. Plus its got to be uncomfortable for him after having all sorts of things shoved down his throat for the past week. He'll get it eventually.

The husband and I are hanging in there. We are very tired and sometimes have a hard time in the mornings getting amped up to come to the hospital. It can get a little depressing every now and then. Luckily we've had a lot of support. Not only nice phone calls and messages, but also visitors have come to spend time with us - brought us meals and gifts for the little one, so that has been helpful. Just gets us out of the "Zone" for a while, ya know? But we have high hopes for getting out of here within the next week or so. We are looking forward to it and nervous about it at the same time. As if we weren't nervous enough bringing an infant home the first time!! Oy vey! This poor kid is gonna have some paranoid parents...

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Out Of My Hands

This song has been getting me through some of the rougher patches in the last few days...

Out on my window ledge
I don't feel safe
And I stay
Looking down on you

It's out of my hands for now
It's out of my hands for now

I can't just walk away
Be nice to walk away
But I don't feel safe
Get away, all the way up here

Its out of my hands for now
Its out of my hands for now

Oh it is
Down in from here
And down from here
Start to feel insane
Betrayed
Out on my window ledge

Now our finest hour arrives
See the pig dressed in his finest fine
And all that believe stand behind him and smile
As the day lights up with fire

Let me in
Let me in

I start to feel like I'm crazed

Betrayed

Out on my window ledge

Now our finest hour arrives
See the pig dressed in his finest fine
And all the believers stand behind him and smile
Watch the day's lights up with fire

Looking down from here
It's outta my hands for now
Out on my window ledge
It's outta my hands for now
So let me in
Let me in

Oh Baby!

This little man just wants to give us a run for our money. *SIGH*

The last two days have been fairly uneventful, as he was just sedated and letting his little body recover from the traumatic surgery. But Stevie's blood pressure was dropping every couple hours throughout the day. They kept bringing it back up with medication, and also put him on Nitric Oxide to open up his blood vessels, making sure his oxygen levels were good. They got it under control sometime in the middle of the night and he was weened off the meds. So we were pleased with all of that and waited anxiously for this afternoon when they could finally stitch up his chest.

His chest was left open for a couple of reasons - to allow easy access because of the earlier complications in the operating room, and to let the swelling go down in his puffy body. Since its one of the first baby steps to getting him home, we were so happy when they finally sewed him up this afternoon!

However, shortly after they closed him, his blood pressure and heart rate both dropped, scaring the crap out of everyone. They quickly got him stabilized, but they still have to figure out why it happened. The best guess right now is probably an infection, so they are sending out some cultures for testing and starting him on antibiotics. Hopefully its something that can be easily treated, and won't cause any further complications.

All stitched up with his new little friend! :)

The good news is that his oxygen levels are now perfect. So the heart is doing what its supposed to since it got it's temporary fix. Thank goodness!

Hoping for more good news as the days progress. The next step will be taking out his breathing tube and that will probably be a couple days from now. Sometime after that he will be moved to the 6th Floor to finish his recovery and practice eating. When he is fully stable and he can eat and breathe at the same time, then we will look at getting to go home! Of course I'm anxious as can be to get him to that point and trying so hard to be patient. Just can't wait to hold my little boy again and see his sweet personality and funny faces come back.

Leaving Him...

Tonight, my husband and I decided we had to get some sleep. In our own bed. And I thought I'd be fine with that decision.

Until 11pm rolled around and I actually had to leave my little boy's side.

I cried significantly less today as the newness of all this settles in. But as I had to say good-night and let go of his tiny hand and walk out the CTICU and down to the car, I cried like a big baby all over again. I know he is in good hands - and there should be very little change tonight and tomorrow - but it was just hard to leave the little man there. I miss him so damn much! He has not been in our lives for very long, but has obviously made a huge impact. I can't wait to see his little personality come back.

We picked up in such a hurry the other day, our house got left just as it was at that moment. There are half drunken glasses of water, half folded loads of laundry, and bills that almost got sent out. I suspect these things won't get taken care of right away, but that's OK. My thoughts are somewhere else. The house is also filled with baby things, which in some ways sucks and in other ways is comforting. I'm glad when he comes home, we will be ready for him. His things will be here. He will be comfortable.

I hope we can sleep tonight, but I also hope Stevie knows that we're with him all the time. Even when we're not. XOXO.

Holding Daddy's hand after surgery. His chest is covered because they haven't sewn him up yet. It is hard for us to see that, but it's also part of who he is now. And his scar will be a reminder of how lucky we are that he's still with us. Cutest li'l heart-breaker in the whole place!

32 Hours and Counting

Today has had some ups and downs. The first 24 hours since we found out about Stephen's condition were a whirlwind. He was transferred to Children's Hospital much quicker than anticipated and put right on the schedule for the surgery. We were so happy that things were moving quickly because that meant he would get to come home sooner!

Once we got to Children's, there was a lot of waiting by his bedside, not being able to hold or comfort him. That has been the hardest part.

They took him in for surgery around 2pm and it was over pretty quickly. They came and told us at 4pm that we could see him in an hour. Everything went perfectly! We were so so relieved. Unfortunately before we could see him, his heart rate dropped suddenly and they had to do chest compressions to get him stable. This happened several times as they tried to figure it out. My mind was reeling at this point, and I was in a very dark place. It was honestly the worst I have ever felt in my entire life. I prayed and prayed that his luck up to this point had not suddenly run out. But it was difficult to even breathe and I felt like my own heart was literally breaking.

They opened him back up and everything looked right. So they were really not sure. Turns out his blood was clotting and filling up the new valve that they put in. It is EXTREMELY rare for this to happen (he is maybe the 5th child out of thousands that they've worked on). But thank God they knew how to fix it and were able to rather quickly. Instead of putting in a plastic vein, they used his own tiny veins from his right arm to re-route the blood. We are not out of the woods yet. We hope that during the episode, enough oxygen was getting to his brain. For now our sweet baby is sedated, but stable and doing well.

Thanks to everyone for all the encouragement and support. This has been so difficult but we are taking it minute by minute. We will keep updating as much as we can.

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