Heart Doctor

Today the baby had his first appointment with the Cardiologist. She is someone who will be in his life for a long time, as he will always need someone checking on his heart. Luckily we love the doctors in that office and we have only good news to report!

They first weighed and measured him and he has gained a whopping 14 ounces and grown almost 2 inches since he was born! I know it doesn't sound like a lot, but he's bulking up! You can really see it in his face, as his little cheeks and double chin are filling out. He's quite the eater, so I'm not surprised. After the basics, they moved on to the heart stuff. An EKG showed that everything looked normal. Then an ultrasound again confirmed that everything was working great. His oxygen levels were good and his blood pressure was on target. So the Cardiologist was very pleased and said he was right where they want him to be for now. That's all we can ask for.

I'm a happy mommy today. Even on 4 hours of sleep.

Oh, bugger...

Well, things have been going pretty good. But we have one little setback to report. Stephen will be going back under the knife again next week. :(

The last couple days, I have noticed a clicking sound coming from his insides. I imagined the worst thinking "Oh no, his sternum is probably coming unwired or something!" then talked myself down, trying not to be dramatic.

But his sternum is, in fact, coming unwired.

Damn.

I took him to the pediatrician this morning and when I mentioned the clicking sound, the doc wanted me to go back to CHLA to have it checked out. I don't question anything this pediatrician says. I credit her with saving Stephen's life, honestly. So we went, and he got x-rays and was checked out by one of the surgeons who did the original surgery. The x-ray didn't look abnormal, but as she felt his ribcage, she said something was off. So they want us back in next week.

We thought of a bunch of questions for the doctors after the fact, but that will have to wait until Monday. It's not an emergency procedure or anything, so he should be out of the hospital relatively quickly - one full day(ish?). I'm just so bummed they have to open up his scarred little chest again so soon. It was healing up so nicely. For now, we are going to try and enjoy the weekend and not worry too much about what is to come.

Boo.

*UPDATE*: His checkup won't be until next Thursday with the procedure on Friday, Feb 4th. We will update again once we know more.

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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