It was a year ago tonight that we first arrived at Stanford via life flight. UCSF doesn’t have a pediatric heart transplant program and they felt that Hana was going to need one. They were right, although who could have predicted that we would wait ten months before listing her for transplant. I had never been more exhausted in my life than the night we arrived at Stanford. My body ached, I hadn’t slept, and then the worst part was the critical condition Hana was in. They talked to us about ECMO which is a type of heart and lung bypass life support system.
Hana never did have to go on ECMO but they had to he big sitting outside her room, waiting and ready, just in case. I’ll never forget hearing the words of the attending physician in the CVICU, “I’ll do whatever I can to save your daughter’s life.” Chills. Interestingly enough, when we first saw her again in the CVICU this past November she asked me if I remembered her and I told her, “Remember you? I couldn’t forget you.”
My dad flew in that night, my mom had arrived that morning. The social worker had reserved Paul and me a sleep room. When we finally crashed in the room. I could hear an awful noise that I kept imagining was feet running down the hall for an emergency. I kept looking out the door and down the hallway to see if they were running into Hana’s room, but all was quiet. (The noise was things moving in with he tube system.)
Now we are here. Things are so different but we are here at Stanford on this day again. Today they decided to stop Hana’s Berlin Heart pump while doing an echocardiogram. I was nervous. There were two heart failure cardiologists (including one of the Berlin Heart experts), a heart failure fellow, the VAD nurse practitioner, the echo tech and the bedside nurse. The fellow operated the Berlin Heart hand pump, manually pumping while the tech took her images. Then they stopped hand pumping for three seconds. Then they started hand pumping again and then hooked the drive line back into the ikus. Hana didn’t even seem to notice. They wanted to see how well her heart would function on its own without the help of the pump. I don’t yet know the results.
It was otherwise another good day! Hana even tried some chocolate that we received in a package! We also got the official clearance to move about the third floor without a nurse! We had to sign a contract acknowledging the new rules of this arrangement (in some countries people are going home on the Berlin Heart!) but the new freedom will be nice!
Our surprise that the VAD (ventricular assist device) nurse practitioner has been working on won’t be ready until Tuesday – stay tuned!
86 days in the hospital, 67 days post-Betlin Heart, 59 days on the transplant list.
2 thoughts on “Stopping The Pump”
I can’t help.but see you as a superhero. Hana looks good. She looks like she is sleeping well. I wanted to tell you that I apologize for not making the PJ’s. As I followed you guys I could see that they may not be the right thing for Hana. I appreciate reading you blog! I come back to it every so often. We are rooting for you all to stay strong, to get enough rest, that the atoms in Hana’s little body will continue to grow in strength and health while you wait for “the big day”. Just thinking of you all big time. Sending lots of love and happiness your way! Oh…and …Happy Valentines Day !
Hi, I found out about sweet Hana a few months ago through the Haight Street Mamas Facebook page. I was in the NICU then because my baby girl, Gaby, has Spina Bifida, so she had to have surgery on her fourth day of life. Since then I have you, your husband and specially your little girl in my mind. I don’t check this every day, but continue to do so quite frequently to see how she is doing and I am so happy every time I read good news.
All I want to say is that because I know how scary being in a hospital is, of course not quite as you guys, a year is a long time, I am really glad that you have this beautiful resource to share her progress rather than repeating the updates a million times because everyone wants to know (it is with the best intentions, but it is exhausting to repeat the same story over and over) and also as a way to vent out. Many times as a mom you try to stay strong, not cry, be positive, but the truth is that we are humans and of course we are scared and sometimes we need a break to breakdown a little, and that is VERY necessary. I have read many times you writing about that, and it has made me give myself permission to cry and feel openly scared and be angry for a second so after that I can move on.
I don’t know you personally, would love to, but just by reading this I know you are a great mom! I have you in my prayers. 🙂 Sending lots of love, you are always in my mind. Hoping the big day comes soon!