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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Scariest Day of My Life

Officially. I would say it was the worst day of my life, but I'm trying to stay positive and realize it could have been so much worse.

It all started when little Stevie had his 2 week check-up with the pediatrician. When we saw the nurse to measure and weigh him, she looked really concerned and asked "Is he OK?" I was kind of puzzled by the question, but told her yes, he was probably just fussy because we had to take all his clothes off. She said that he looked really blue to her. I told her sometimes when he cried really hard, he would turn a little blue, but it didn't seem abnormal to me. Probably because he would always calm down quickly and return to his regular color. She sent the doc in who had some more specific questions for us. Was he eating normally? Pooping? Peeing? Throwing up? All standard stuff, and everything sounded normal from external appearances. She listened to his heart for a long time and tested the oxygen in his blood. He seemed OK, but she still wasn't pleased with his "dusky" coloring. She asked that we take him to the emergency room right away.

My husband and I were a bit surprised, but of course we went. They checked us in quickly, started running a bunch of tests with him in my arms, hooked up to all types of machines, and determined that he should be admitted to the NICU right away. At this point, we had no clue what was going on. There was talk of a respiratory condition or possibly even a heart defect. We had to wait outside the NICU as they hooked him up to even more machines and tried to get him sedated so that he'd be comfortable. Within a couple hours, a cardiologist arrived and did an ultrasound of his little heart. It almost killed us waiting for the news and seeing the poor baby looking so sick. It was honestly really hard for us to keep it together at all. There were lots and lots of tears today.

But here's what they had to tell us: Stevie does have a congenital heart defect. It's called "Tetralogy of Fallot with Pulmonary Atresia" Yeah, all those big words didn't mean much to me either. But the cardiologist was really good at explaining so that we could understand. Basically, the baby's Pulmonary Valve never formed. It's one of the major valves in the heart and pumps air to the lungs. He also has a hole in his heart between the left and right side. There is no way to fix it other than heart surgery. The reason he was able to live this long without any symptoms was because all babies are born with an extra vein that supplies blood to the placenta while they are in the womb. Normally, this extra vein closes up once the baby is a few days/weeks old, at which point the heart and all the regular valves take over, getting air to the lungs. His body was using this extra vein to supply blood to the rest of his body and once it started closing, he started losing oxygen, giving him the blue appearance.

So Stevie will be having heart surgery as soon as possible. They will put in a fake valve for now, and when he's about a year old, they will put a more permanent valve and patch the hole in his heart. The positives are that A) The pediatrician caught this in time. It was honestly such a blessing that he had an appointment today because we don't know how long he would've lived had we waited. B) Of all the heart defects to have, this is one that is relatively easy to fix and the success rate of surgery is very high. The surgeons deal with this type of defect every day. C) The nurses keep telling us how strong he is. He's a little fighter and should recovery fairly quickly. He's been very stable so far and looking good.

Now Daddy & I are getting ready to have him transported to the Children's Hospital. It's nearly impossible to look at his tiny body and keep it all in perspective, but we are trying really hard. We are just asking everyone to send a few extra prayers our way that he will be OK. That my husband and I can find comfort during this time. That the doctors are making the best decisions and will have steady hands during his procedure. That the baby will know we are there and loving him, even though he can't really respond right now.

Like I said, scariest day of my life.