I wish I could say that being home has been nothing but wonderful. Tonight we hit a big bump. It is really great to be home. It is a lot of work too. Imagine suddenly having to go away for three weeks and coming back with a newborn baby you didn’t plan for. There is lots of unpacking, organizing, preparing milk and medical equipment, measuring out medications, timing medications and feeds, lots of cleaning and still looking after a baby who needs care around the clock.
The big bump we hit tonight was when Hana started vomiting – a lot. She was choking and gagging and vomiting. It was very scary. It happened after her evening medications and I suspect one of them is upsetting her stomach. The carvedilol was made at a much lower concentration so she needs to get a lot more liquid for the same dose. I think the extra volume may be too much. I hated having to call the on-call pediatric cardiologist at Stanford so soon after leaving. The nurse practitioner called me too. They were very clear that there is no matter too small, in order for us to call them. My mom decided to change her flight and stay another week. Tonight’s plan is to watch Hana and slow down her NG tube feedings. I started to cry again. I just feel so scared. At least at the hospital she was hooked up where they monitored her heart rate and breathing – you didn’t have to worry because an alarm would go off!
I’m hoping for a restful night for Hana.
Hana's Heart 
A big big big thank you to Marie! It gives me (and I am sure the rest of us) great comfort that you are there with them during this ordeal. I also know that you wouldn’t be anywhere else! So, thank you!
Kathleen, I know can’t be there with you… But, I am here, praying, willing to listen, sending you strength, wishing I could help.
Love, peace and prayers
LikeLiked by 2 people
yeah, me too! Ditto what Dana said!
hopefully some of the excitement about going home upset her belly too and today will be much better.
And you don’t have to clean the house all at once either. ( we are on the computer blog thing and cant see the house anyway!!!)
LikeLiked by 2 people
I’m so glad you called the doctor and that they encouraged you to call with any question. I know you are so glad to be home which is very understandable but if you felt as if Hana needed to be back in the hospital at any point that is not a reflection of you or anyone else in your house. I know you would feel that way and I want to tell you now that no one would feel that way. So we are praying that you can stay home and all will go smoothly, bumps are ok… But remember that very first post… Don’t wait…Trust your instincts…let your heart flood with love…
love you all 💙💙💙
LikeLiked by 2 people
I’m so sorry you had a rough start. I’m so glad your mom is there and can stay another week. I know that brings you comfort. Don’t worry about cleaning…take it slow.
LikeLiked by 2 people
When Brennan was in the hospital and hooked up to the machines, we struggled with how every little thing made the alarm go off… When we got home we were hyper sensitive to everything that used to make the alarms go off… It was stressful. After a few days/weeks we got the idea of what is something to worry about and what is something to just let go… Everyone calls the on call dr.s all the time, whether it’s the pedetrian because you don’t know how to boogie suck your child at 3am, or there’s 5 times more liquid coming out than when in… Hang in there!… Sleep is overrated!… (Yea right!)
LikeLiked by 2 people
Coming back home after a hospital stay is a hard transition! If they didn’t send you home with one, you can ask your cardiac nurse for a pulse/ox machine to have at home. That will allow you to spot check Hana’s heart rate, breathing rate, etc as needed to give you more insight in to what’s going on with her. And definitely do NOT hesitate to call the on-call pediatric cardiologist! No matter the time! I’ve called Ava’s cardiologists at 4 AM before. That’s what they are there for!
Just a heads up that there is a slight possibility that the Synagis shot is the culprit for the vomiting. It’s a rare side effect and not top of mind for everyone but Ava had to stop her Synagis injections her first winter because she would have days of vomiting and lowered sats after each injection. The first time, we all thought it was a coincidence. When it happened the second time, and it was happening to another cardiac baby as well, we all (her cardiac care team, Rick and I) decided to stop the injections.
Sending hugs and prayers your way!
LikeLiked by 2 people
Love that you are home with Hana. Hate that you are having such a tough time :(. I look for your updates each day and will keep praying for you all. Hugs.
LikeLiked by 2 people
We are thinking of you and sending lots of love.
LikeLiked by 2 people