This update is long overdue, so I apologize. I have been incredibly busy and exhausted which will all make more sense when I tell you our special announcement. But, first things first, let me tell you how Hana is doing!
Hana has had some ups and downs. The highs are very high and the lows haven’t been bad enough that she had to be admitted to the hospital, but she got kind of close. The first two weeks out of the hospital were amazing! She was eating a ridiculous amount of food on top of getting three tube feeds a day so her weight jumped up. Then each week after that we would drop a feed and she also stopped eating so much at the same time. She was incredibly happy and had a huge jump in her speech development. My mother came out to help out for four weeks. Hana loved that.
The first two weeks of my mom’s visit were also great. She had slowed in her eating but was still doing well. She finally weaned off her steroid after nine months. About 48 hours after her last dose, coincidentally the day after pulling out her NG tube, she was not right. Her blood pressure was really low and she was kind of lethargic and sleepy. I was also away all day (first time since she had her transplant) so Paul and my mom handled talking with the team at Stanford. By the time I got home she perked up and seemed much better the next day. But things started up and down after this – with more GI symptoms, a few vomiting episodes and diarrhea. She would have a bad day then a better day followed by another bad day. We took her back to Stanford and the retested her for adenovirus, which came back negative (it would have been very unlikely she had it again). They said if she got worse or if she didn’t have intermittent good days then they would admit her to the hospital for observation. We avoided this but ended up putting the NG tube back in to keep her hydrated.
This persisted for a good ten days but fortunately Hana seemed on the mend for the last few days of my mom’s visit. My mom was here for four weeks! The illness made me kind of anxious because I was dreading spending more time back in the hospital. This last week Hana has been really great, playing and singing. We just need to encourage more walking, running, jumping and climbing- it seems she has not quite gotten back to where she was in December. Hana also had another heart biopsy in early March. This was her regularly scheduled biopsy, since her last one was in December. Her heart pressures were the same and her biopsy result was a 1a. Hana has always gotten a zero for rejection but they treat 1a the same as zero so 1a is good news. Her next biopsy is her one year biopsy! This will be more invasive as they go all the way into the left side of the heart (right now they only go into the right side of the heart and don’t go any further) and the recovery time is longer (she will spend several hours in the short stay unit afterward).
So, as I said earlier, we’ve been incredibly busy. My mom was out for the month of February and we, along with an organizer, finally went through all the chaos of piles, boxes and bags of things building up over the last year or more and got some projects done around the house. We still had stuff we put aside to make room for Hana’s big, first birthday party. I was slowly making progress on all these things but not fast enough for our approaching deadline. This is part of our special announcement.
So here it is, (drumroll please) projected for May 3rd, Hana will become a big sister! That’s right! We are expecting another girl in about six weeks! We are very excited and nervous. The nervousness is about caring for Hana, with all her needs, and a newborn. But Hana will be almost one year post-transplant and things should be (and already are) much easier. We are also nervous that this new baby will have a perfectly healthy heart even though we were told the chances of her having dilated cardiomyopathy is so low that they don’t recommend against having more children. I am getting extra ultrasounds and I also had a fetal echocardiogram and everything looks great! I think this is why we delayed announcing anything – we wanted to know more information on the health of the baby. But by the time we knew things were looking good Hana had gotten sick and then we were preoccupied with her hospitalization. We are getting more excited with each day! I think Hana is going to be a great big sister!
I must add that this time of year – February and early March is hard for me and even more so this year. It’s the time of year when we were shocked by the news and events of Hana’s heart failure and our lives and what we thought parenthood would be like forever changed. I have a very hard time looking at photos of Hana leading up to her being diagnosed with heart failure and hospitalized and I can now see in her baby face the signs that we all missed. It breaks my heart. Going through and organizing all the stuff in the house, including Hana’s baby stuff, reminded me again of that time and it has been very emotional, more so than I imagined it would ever be. There is more lingering sadness and grief than I thought. I guess the imprint on my heart, from this time, is much deeper than I realized. Even now, writing about it is very hard.
I don’t want to linger in past trauma, not when there is so much promising life to live, but sometimes these things have a way of grabbing hold of you until they run its course. So, I’m letting it run its course, slowly, and hoping it doesn’t create any additional and unnecessary drama.
We have so much to look forward to. We have so much to be grateful for! Thank you, everyone for all your support!
This video is Hana saying hi to her nurse practitioner, Jenna, from Hana’s days on the Berlin Heart.