Month: May 2015

Hana awoke every hour (at least) starting from midnight until 7am, when we got her up for the day. She was pretty cranky again, I think she needs more sleep. There was a mad scramble to get the morning routine done and a nap in and them ready to get out the door for her appointment with the heart failure/transplant cardiologist. Somehow we managed to walk in the door right on time.

The cardiologist we saw is one Hana has seen many times in the hospital and once in clinic. I really like her, she came from CHOP I don’t know how many years ago, not too many. Basically she said that Hana looks great, seems great, her heart is not in failure. Her vomiting must be attributed to something else and we should follow up with her GI doctor.

She also addressed some concerns we had from talking to Hana’s Kaiser cardiologist last week. She said that Hana will continue go up on her medications, but they do it gradually because they can affect her blood pressure too much. She said that even though her echocardiagram is unchanged, that it doesn’t really mean anything about how she really is doing because some kids have echos that don’t change and they are very sick and some have no change and they seem really well. She said there is so much variability in how the body compensates and deals with the situation that it is very hard to predict or say what the best course of action is or what the outcome will be. She said that they don’t yet understand why there is so much difference.

There is a lesson in this for me – don’t compare to others because I will get no useful information. Hana is Hana and she always will be. I just need to see her as she is and not compare her to others. That’s what the doctors are doing. Sometimes it is hard, when I see babies who are well, healthy in all ways we consider so. But the sooner I put this behind me and make my new normal then the better off I’ll be, and hopefully Hana too.

The funny thing about all this is Hana did not vomit at all today. She looked like she was getting ready to vomit a number of times, but she never did! I felt a tiny bit silly for taking her in when she seemed so much better, but  the doctor reassured me that bringing her in with they symptoms she had was the right thing to do. I hope tonight will be a better night’s sleep.

Hana woke up crying. The kind of crying with real tears in her eyes. Of course, I’m not wild about starting a day like that. In the back of my mind I wonder if Hana is just a bit too unhappy. She did not sleep well and woke up every thirty minutes or so starting around 3 am. I want her heart to heal. That is what I want, but maybe what she wants, is a new heart.

During breakfast, while she gets her 60 mL of fortified milk over an hour (that’s only two ounces!) and we eat yogurt together, she got a bit too ambitious on a bite and gagged. Then she three up a little bit. It wasn’t too much or too bad but it was a bad ending to what had started out as a pretty good eating session (thanks to youtube’s Baby Izzy Eating Porridge).

Afterward, I put her back to bed and she slept for maybe fifteen minutes. An hour or so later I tried to get her to take a nap and she slept maybe fifteen or twenty minutes, which is when I started her next feed. I started it at a very slow rate. When she woke up, I changed the rate to be faster. She was doing fine, zooming around the kitchen in her walker with less than 20 mL left to go, when she vomited. This time she vomited a lot. She didn’t cough or gag beforehand, but up it came. Judy arrived to help just in time!

Later in the day, she vomited again while in her stroller on a walk. This was her third feed of the day and again she vomited near the very end of her feed. Then in the evening, at the very end of her feed, she was getting agitated while trying to crawl and she vomited again. That’s four vomits over four feeds, although the morning one doesn’t really count and maybe the evening one doesn’t quite count because she was upset. But I called Stanford anyway. The pediatric cardiology fellow on call decided to call the heart failure/transplant doctor on call. They said they were on the fence about bringing her in to Stanford that night, but the definitely wanted her to be seen tomorrow.

So, tomorrow we will head to Emeryville to see one of the heart failure/transplant doctor on call in her office there instead of going all the way to Palo Alto. I am glad, but only in that I am worried and maybe this will help alleviate some worry. Maybe Hana just has a bit of a cold. Maybe she is just becoming more sensitive to her NG tube feeds. Maybe its just time to get her a new heart.

I really, really want Hana’s heart to heal. I know that is a very small chance, but I still want it.

From Saturday:

Yesterday, I took Hana to see the physical therapist. This was to check if she had some kind of over-extension problem that prevented her from getting into a good position for drinking a bottle and eating. I had my doubts, but I guess its good to rule things out. They guy was pretty amazing. He had a really nice way of working with a baby. His assessment was that she was fine and even advanced in several things. The only thing he noticed unusual was Hana’s tendency to want to stand up on the balls of her feet, which is probably from all the time she spends in the walker. Oh well, we aren’t going to be able to get rid of the walker any time soon.

After that it was a pretty normal day. Hana did vomit twice, although it wasn’t too much volume. My heart sinks every time she vomits. Today she has vomited once. It was a fairly good amount and it was while she was sitting in the stroller. I have been trying to run as many of her feeds while we are walking Poppy so that Hana is upright. We are fortunate in having a very smooth riding stroller. Before Hana vomited, I paused her feed when there was about 20 mL left and gave her the dose of Iron, so she wouldn’t get it on an empty stomach. Then I gave her the rest of the feed. About ten or fifteen minutes later she vomited. Now, I’m wondering if it is the iron. Tomorrow I’ll try giving it in between feeds and see how she does. Poor thing was covered in vomit the rest of our walk home.

Last night I was reading about Lizzie Craze. She had the first successful pediatric heart transplant thirty years ago at Stanford. She was two years old at the time. They think she may hold the record for number of years with the same transplanted heart. She runs, she got married, she has a job at Facebook. Her parents moved to Palo Alto from Ohio to be near Stanford. That’s another thing. I could say I’d like to meet Lizzie Craze but really, I’d like to meet her mom, Susan Craze. She and her husband had four kids before Lizzie was born and all but one of them died from dilated cardiomyopathy, the same diagnosis as Hana. One of the first four kids, a son, was also diagnosed with a less severe form of the disease. He lived to be fifteen before his heart started to fail him and he needed a transplant. Lizzie was born before this happened and was diagnosed at four months with dilated cardiomyopathy, she desperately needed a transplant. Therefore, Susan Craze had two kids within a year that needed a heart transplant. This was before pediatric heart transplants were really known and done. They didn’t even really know how to get organs donated, they weren’t even sure if using a donor organ was even legal.

Susan Craze was facing the possibility of losing all of her children, of being childless. She had already lost three children. People have told me that they can’t imagine going through what Paul and I are going through. Well, I can’t imagine going
through what Susan Craze went through. I would love to hear how she did it, what pulled her through, what gave her hope, especially with a procedure so unknown and seemingly risky. I would like to know how mothers facing this fate do it, how they did it. Maybe “do” is the wrong word. They “did” what they had to, but how did they find peace? Or not.

Meet Hana’s friend: