Home, Semi-Sweet Home

Yes, we made it! We finally got discharged from the hospital and came home. Although we were only there a little over a week and he's come so far in such a short time, it felt like an eternity.

I was really, really anxious to get out of there and Stevie wasn't exactly cooperating. He was just crying really hard and seemed like he wanted to be fed every 5 minutes. So it was hard to make a clean break. But we finally walked out of CHLA at around 1pm on Tuesday. I got to carry him out in my arms (with a bottle in hand in case he cried again). It was an exciting moment.

But of course, overwhelming at the same time. As I mentioned in earlier posts, we thought we might be nervous to bring him home and take care of him without any nurses around... and I was right. We were nervous. That night, it took me awhile to fall asleep. I think I must have checked on him 10 times. He slept in our room so I didn't have to go far, but it was definitely hard to get comfortable and just let him be - although, I didn't have to let him be for long. He was awake every 1 & 1/2 - 2 hours wanting food. One of the meds he is on sort of flushes him out, so he does get hungry pretty often. Left me feeling wiped out by 6am though.

Wednesday was a challenge too. The husband had to go back to work and just the thought of me being home alone with the baby all day was really nerve-wrecking. I kept looking at him thinking "Is he turning blue? Is he breathing right? Is his heart beating at the right pace? WHAT IF I DON'T REALIZE THAT SOMETHING IS WRONG??" I was intensely doubting my abilities as a mother. And this was all before 9am. Not a great way to start the day! I just worry so much because I didn't realize anything was wrong the first time around. Would I figure it out this time? It's a hard place to be. So I cried (some more). And prayed (some more). Just hoping I would make good, rational decisions and do the best I could. I think every mother hopes for that, its just a little different when your child has special needs. I'm sure I'll be hoping for the same thing every day.

The rest of the day, Stephen wanted to be held. Nothing else would soothe him. It was sweet at first. Lovely to hold him. But by 3pm when I was still in my bathrobe and hadn't eaten all day, I started to feel pretty frustrated. He was just crying so much. Part of me just wanted to let him cry it out, but with a sick little heart like his, it's not a good idea. The heart would just be working too hard. So I caved in and gave him some pain medication, just in case he was uncomfortable. That did the trick and he slept for 3 whole hours. Ate again and slept some more. Phew! Part of me thinks he just wants that grape-flavored medicine, so he fakes it. Man, he loves that stuff.

He always makes this face when he is asleep. I hope he's having nice dreams, but its probably just gas.

So yes, as difficult as it has been and as many moments as I've struggled just in the last 2 days, being home is wonderful. I love sleeping in my own bed. I love being able to eat and watch TV on my couch. I love that the little guy is getting to know his surroundings here. I love the familiarity of it all. When so much is unknown, home is always a comfort.

No News is Good News

As long as everything keeps going the way it is, looks like we'll be going home before the end of the week! I am nervous, but mostly just can't wait. I am so ready to be out of the hospital.

Since we moved up to the 6th Floor, I have been spending most of my time here. I go home to shower and unwind for a couple hours, but other than I'm right here by the baby's bed. The huz spends most of the day here too, but I insist he goes home at night since there is no sense in both of us being so tired. Plus he has to go back to work this week, so he needs the rest more than me. I can always take naps during the day. The busy nights are good practice for taking Stephen back home - except that I will get to sleep in my own bed and not this crazy fold-out chair! But it's amazing where you can fall asleep when you're tired enough.

Baby continues to eat more and more every day so it's really exciting to see that. The nurses are also teaching us how to administer his medications (looks like he'll be on 3 different things at home). I think we would be going home a lot sooner if he wasn't on cortisone, but he has to be weened off that and later this week is the soonest they can get him off the stuff. It doesn't hurt that here we also have access to morphine, which helps him be more comfortable. The best I can do at home is baby Tylenol - just doesn't have the same affect. So hopefully he will be mostly pain free when we head home. The incision is healing nicely so I think he will be ok.

So it's all good news right now! We are trying to wrap our heads around how we are going to do this all again within the next year, but I think now that we kind of know what to expect it will be a little easier. And as long as the 2nd surgery goes well, the hospital stay shouldn't be very long at all. After the 2nd surgery he shouldn't need another one for about 8-10 years depending how much he grows and whether the new pieces of his heart are wearing out or not.

We are glad our little man is so tough. Gives us faith that he will pull through any other procedures with no problems.


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Facebook

The social network has sort of been my link to the outside world. Even though I can't TALK on my cell phone in the hospital, I can text and go online so I do spend some time doing that every day. It has helped spread the word quickly about what's been going on and its been a source of comfort getting so many nice comments and messages.

Sometimes its really nice to hop on and see what my friends are up to - and know that the world is going on as usual. Other times it makes me a little bitter that everyone can go about their lives while I'm stuck here. It's just one of those things.

But if I didn't have Facebook, I'm sure I would be going crazy of boredom. Plus I would've had no idea that today was Saturday or that it was almost 80 degrees outside!

Enjoy, friends. I'll be back to join you in the real world soon.

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Movin' On Up

Well we made it up to the 6th Floor. It is a good thing for the most part because it means that Stevie is on the road to recovery! The only bummer about it is that now he doesn't have his own full-time nurse catering to his every need 24 hours a day. The nurses up here have so many more patients, they can't be nearly as attentive. So a lot of the work is left to the husband and I. This is great when we get to feed him and love on him, but it sucks when anything out of the ordinary happens.

For instance, today I changed his diaper and he threw a raging fit where he was forgetting to breathe and turned bright red as his oxygen levels started to drop. No nurse in sight. I sort of lost my cool, and started crying, feeling like I myself was going to have a heart attack. But he quickly calmed down and returned to his normal color, while I was left feeling freaked out and extra nervous to try and change another diaper ever again! I really hope THAT doesn't happen every time. Geez.

Other than me being a bit of an overreacter, everything has been looking pretty good. Stephen's vitals are still great and he is off most of the medications. He has started eating breast milk from the bottle and if he can keep that up consistently, that will be a huge step in the right direction. The other thing they are monitoring is his chest wound. They want to make sure that heals up nicely. If it does, I have a feeling we will be home in the next week!

We are so proud of our little guy for all the progress he has made. And I do have to send out a huge thank you to the staff and surgeons and nurses in the Cardiothoracic Intensive Care Unit (CTICU). They really work so hard taking care of their patients and obviously we wouldn't be where we are today without them.

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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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