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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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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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.