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.
What a whirlwind you’ve been through. How crazy that this all happened. I’m so glad that everything went ok for your cute family. You are so strong Jaana!
Take care and get rest when you can.
so glad Stephen is home. You will become more comfortable as you get use to all of this. You have that connection with him and you need to trust that. Also,your smart to be praying… that is a great coping tool as well as comfort. You will definitely need that for the next 20 years! love and prayers sent your way!!!!
Aunt Diana
You can do this! You are his mother and no one else can take care of him and love him the way you can. You will have inspiration and instinct about this little one. Follow it and don’t doubt it.
With each of my girls I’ve worried about there needs and am I meeting them especially when they are so new and tiny. I think it’s just part of being a mother.
Try to sleep when he does. It’s amazing what a little sleep can do for your mind.
Woman I have been checking your blog a few times a day waiting for an update!
You know the newborn period is hard even if we didn’t have heart babies. The fact that they have heart issues just make new mom worry x 1000.
I saw you and your H with Steven and I’m fully confident that your are doing a fantastic job.
Hang in there. George and I are sending out many good thoughts your way.
Jaana,
I’m so glad that Stephen made it safe and sound. Glad that he is now out of the hospital and in your arms. Jaana, you are a terrific mom. Don’t worry, Stephen is in good hands. Trust your own instincts and know that you are making the right decisions for him. Sometimes, when we are too worried, we do not make the right decisions. Try to read Stephen’s signals. You are doing the best you can. 🙂
Oh Jaana. You are doing great. And yes, even mothers who have brought home 3+ babies still worry. But with special circumstances, its more of a concern.
Remain prayerful and you WILL be blessed to know what to do for him…and even Paul. Love you!!!