Hana's Heart

Today Hana vomited. There didn’t seem to be any rhyme or reason for it either. She wasn’t upset. She wasn’t fed too fast. She wasn’t fed too much. She hadn’t recently had her iron or other meds. She wasn’t squirming around too much. She wasn’t laying down. She wasn’t too tired. She didn’t cough or gag herself. But she still vomited. I wish I knew why so I could prevent it, because I can control all the other things, maybe not directly, but I can figure out a way to carefully tinker with the situation so that she doesn’t vomit. But not when I have no clue as to why. This is where I have no control.

When you spend a lot of time at home trying to juggle a situation with a lot of moving parts, you learn to try to control as much as you can. Or, at least I do. But this is a trap because it is a fool’s hope that you do, in fact, have control over a situation. It is scary and nerve wracking and promotes uneasiness to feel like you are not in control. Sometimes I freak out a little bit. Anything that gets slightly out of balance and I feel like the whole world is going to fall apart. (Okay, that is a bit of an exaggeration.) I keep trying to build it back up, to keep it on track. But this can create craziness and can make me a pretty unfun person to be around.

Today Hana had bloodwork done. I hate this. She hates it. It actually went pretty well and they only had to stick her once and the blood came quickly into the three viles. Then, this evening they had the results already, online! I checked them, feeling nervous. I’m searching for her BNP levels. My heart sinks. Now it is 1049, up from 899 last time, which was up from 696, which was up from 411 when she was discharged. I know, they say this is just one factor and is not necessarily a good indicator of the overall situation, but still. I still want the numbers to be going in the other direction, or at least staying steady. This BNP number is not something I can control. It feels scary and nerve wracking and it makes me feel nauseous, maybe I’m the one that could vomit.

I think of yesterday, Mother’s Day. I am so happy to be a mother. It is the greatest honor of my life. I don’t need a “mother’s day” to remind me of this, it is something I think about every day since Hana was born. I can cherish each moment with my baby that I love so much. I can live in the present moment. I can show her my love and care for her the best way I know how. Those things, I can control.

I thought yesterday was going to be another vomit-free day, but alas this was not the case. Hana was very unhappy in the car and proceeded to vomit all over herself in her carseat. Milky white snot was pouring out her nose too. It was pretty awful and she was very upset. Its usually pretty bad when it comes out her nose. I really hated hearing and watching it, my poor baby. It just seems like so much for someone so young, and so often too.

Unfortunately, it started again in the wee hours of this morning while her continuous feed was still running. Hana vomited a few times and then was awake from 5 to 6 am. She was difficult to console. Her nose was stuffed up and then she couldn’t breathe and suck on her pacifier. She vomited again later in the morning during the first half of her first feed. Then again during the second half. She was pretty unhappy about getting fed.

When it came time to start her second feed of the day, she became really unhappy again. We noticed that milk was just dripping out of her nose! We stopped the feed. I tried calling my mom, but no answer. I knew I needed to talk to a nurse. I talked to my brother-in-law and this made things better. I don’t want to embarrass myself too much, but to make a long story short, he suggested I start by checking the placement of the NG tube. I did this and I did not hear the swish of air in her stomach like I should. Then Paul said he heard air coming out of her nose.

We took the NG tube out and only a couple of inches was still inside her nasal cavity! I can’t believe we didn’t notice how long the NG tube was getting! But of course, how did this happen when it appeared to still be taped to her face. Well, it did and we probably should have replaced the tape several days ago because it had started to fail. Poor Hana, hopefully we didn’t leak too much milk into her lungs. (Hopefully NO fluid got into her lungs.)

We left the NG tube out for many hours, as an experiment. She had only gotten four ounces of milk that day. I tried giving her a bottle several times. She slept terribly. She was irritable and hungry. She finally drank almost two ounces of fortified milk (over a couple of hours). We put the NG tube back in with enough time to run one bolus feed before bedtime. Then we just added more volume to her overnight continuous feed. I hope it goes ok. Maybe it is finally time to push the bottle a little more!

It was a good day! You know what that means? It means no vomiting. Oh, and she drank more than an ounce from the bottle! I didn’t do much today so that made it easier, perhaps. I should rephrase that. I did A LOT, but I didn’t try to go out or do anything “extra”. The only “breaks” I take are to pump and that doesn’t really count, especially when I am trying to entertain a baby at the same time. I will say that one thing that makes pumping and entertaining a baby at the same time are Baby Signing Time DVDs. These came as a gift in the mail from a college friend and a few other undisclosed gift givers (thank you!). They are really great. Hana loves watching the kids and cartoons and hearing the songs and I get a review of the signs to help incorporate into our daily dialogue (when I have a free hand, of course).

In other news related to gift giving from unknown sources, Hana received two hats from an Etsy shop – YumbabY. I have no idea who bought them and had them sent. We took one of the hats for a spin on our evening walk. The other one we tried out when we got back. The second one made me laugh and laugh and Hana started laughing too! Thank you! I hope you enjoy the pictures!

Today was another three vomit day. Sigh. Big sigh. So, I know it is not her heart, but I hate that Hana feels lousy enough to vomit three times a day. That would suck for any person. The only thing that seems related is that they all occurred before she was supposed to sleep (either nap or bedtime). I thought since yesterday she didn’t vomit at all, that maybe we could have another day like that. Tomorrow I’ll send messages to the GI people watching all of this on Hana’s behalf.

In other news, I took Hana to the California Academy of Sciences today. If you haven’t been here, it is pretty amazing. Hana LOVED it! She especially loved the aquarium! I think she just loved being out and seeing something new and watching other kids. The most amazing thing happened while we were there. We walked through their amazing Rainforest display with tons of butterflies. A huge and very friendly Blue Morpho butterfly landed right on Hana’s head and hung out for a while. I was so worried that she was going to freak out and try to swat it away and hurt it (and you aren’t supposed to “touch” the butterflies, but what if they touch you?) that I didn’t take a picture. There was a man standing nearby watching who cried out, “Get a picture, get a picture!” It was pretty cool, I guess the butterfly liked Hana!

Tomorrow I will persevere in my quest to find out the magic recipe of keeping Hana from vomiting.

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:

It’s been a long week. Besides taking care of Hana, we have to get a new mortgage this week and sign a new TIC agreement. If you don’t know what a TIC is, its a strange real estate practice in San Francisco where a former single family home/building is split into multiple units. This is what we have, a one story flat in a two story building. Our partner decided she was putting her flat on the market a week before Hana went into the hospital. We had to get a lawyer and a new mortgage. We had to meet the new partner/owner. Fortunately, our friend Rose handled most of this. But it is still extra stuff going on that is adding stress and extra work right now.  Yesterday the notary from the title company came to the house and we had to sign a huge pile of papers.

Anyway, I haven’t had time to write. Hana saw the feeding specialist again yesterday and we had a fairly successful session where Hana ate a couple of teaspoons of prunes. A few hours later, back at home, she vomited a lot. It was at the end of her feed and it looked like the entire feed. It didn’t even look slightly digested, it just looked like milk that had spilled on her tray. She vomited a second time yesterday, but now I can’t remember when. It was a very small amount, whenever it was.

Later in the day, Hana had another echocardiagram and we saw her Kaiser cardiologist. Her Kaiser doctor seems much more concerned than the folks at Stanford. That is not to say that the folks at Stanford aren’t serious, they are, but I suppose they also see this every day, all day long. I suspect that Hana could possibly be one of the sicker patients our Kaiser cardiologist sees. Her concern is that Hana is not showing any improvement. Her echocardiagram is essentially the same as that first fateful day. The meds are keeping her stable. But how long do we let her keep vomiting once, twice, three times a day? How long do we make her get her nourishment from an NG tube? How long do we make her take all these medications? How long do we allow her to teeter on the edge before she gets a cold? Kids get sick eventually and Hana getting sick could mean time spent in the ICU. How long do we let this be her way of life? She also said (the cardiologist) that we are essentially trading one illness for another. Transplant is a very serious thing. It means a lifetime of medications and lots of appointments, just to name a few things.

It was good to hear her perspective, even if she kept saying that she defaults to the folks at Stanford because they are the experts in heart failure/transplant. She wants a cardiologist to look at Hana every two weeks, whether its at Stanford or with her.

Today there were three vomits (so far). Two very, very small ones and one very large one. Sometimes I think that if I can just get the right balance of volume, calories, feeding rates, positions, sleep positions, timing of meds then she won’t vomit, she will gain weight and thrive. Or, maybe she is vomiting a lot because of her heart and that is the part that I am in denial about.

I talked to the dietician today. We are going to hold steady for now – try to not run her bolus feeds during the day while she is napping. If that doesn’t seem to help over the next several days then we may try having her nap and sleep on an incline. We will do another weight check in ten days or so and see if she is gaining. They would like her to gain a little bit more than she has been. Oh, did I mention that she gained weight at her weight check yesterday? She gained 100 grams over the last week, which I think is about 3.5 ounces.

Today felt really busy, from the moment I woke up until now. What happened today? We tried some more prunes, with a little help from our friends. She took a teaspoon or two, I think. We changed her NG tube because we got new tubes delivered today. The new tube has me very excited because it means no more leaky tubes. We are trying some new adhesives as well, since the duoderm seemed a little harsh on her skin, although when I took it off today it didn’t look too bad and it had been on more than a week, I think. Hana was very tired from napping poorly and the NG tube insertion didn’t help. I sent her to bed without a bath.

There is a dark corner of my mind that believes that if I do an amazing job, perfecting everything possible, taking care to pay attention to every single detail, to never cut a corner, then Hana will get better. Like it will make the difference between getting better and getting a transplant. Maybe some of it makes a difference. Maybe some of it is just out of my hands. But I can still try and I can still hope and I can still pray. And then somewhere in between I need to find some peace.

Today, Hana slept late, which gave me time in the morning. I finally woke her up at 8am and I took her and Poppy for a jog. It was a beautiful, warm morning. It was a good way to start the day. Later, we got to go to the park and I took Hana to the swings, which she liked (until her NG tube port opened and leaked water all over the place, that was no fun). She spent a lot of time squirming around on the floor, any day she will start to crawl! We even got to go on a short, very windy evening walk too.

Unfortunately, she also vomited three times. The first time was about a minute after I gave her morning meds. I got her into the bathroom and most of it went into the tub. Then I had to call Stanford and we decided to redose her Enalapril and Carvedilol. She had only had a 60mL bolus feed so far, but I guess it is still too much for her stomach in the morning. The second time was later in the afternoon and it wasn’t much more than spit up, but I thought it was going to be her whole feed. The third time was before her evening bath when she vomited, what looked like, her entire 140 mL feed. Paul was holding her in the kitchen. That made me the saddest, because I think of all those calories she needs to gain weight that she will not be getting.

Despite all this, Hana seemed in really good spirits, so it felt like a good day. Also, we didn’t have any help today. I should clarify that. We actually had lots of help today – a friend left an amazingly delicious dinner on our doorstep at 7am, our dogsitter voluntarily came by to walk Poppy and our new housecleaner came by in the afternoon to clean the house. Other than that amazing help, we were able to manage everything else on our own. We are so lucky to have so many amazing people in our lives. Also, thank you Amazon, for having all the things I need delivered to my doorstep, since I really don’t get a chance to get to the store any more.

I will say, I am worried about the vomiting. We’ll see what tomorrow brings. Hana seemed gaggy all day. I’m going to try meds first, then a half her bolus feed over an hour. Maybe that will help. Other than that, I guess I need to do a better job at keeping her upright, although it seems unfair not to give her more time to explore and exercise on the floor like babies need. I’m sure I can find a way.

I feel like my life revolves around preventing vomit. I change up the morning feed combinations to try to find something that works. Yesterday, she still vomited during her morning nap. Today, she vomited before her bath. This one is my fault, I think. I was attempting to make something for dinner. Hana was in her high chair where she is supposed to be playing with food (and hopefully putting it in her mouth) while also getting her tube feed. Well, she was cranky and started to fuss and I just needed a couple more minutes to finish. Unfortunately she fussed too long and she started to vomit. I should have responded sooner. I should have let the soup I was making burn. Or at least turned it off. But I am always trying to squeeze just a little bit more out. So, if I had picked her up sooner she wouldn’t have vomited. Maybe. Is this my fault? Maybe. Maybe I think somehow, I done something to deserve all of this.

I was really hoping to have some non-vomit days. We will try again tomorrow. Hana has otherwise been quite happy. She’s been talking a lot, or using her voice a lot. She’s been napping fairly well too. She seems generally happy. I hope so. I hope she is feeling well in between throwing up. I hope she starts to gain weight again.

We talked to Hana’s cardiologist at Stanford on the phone on Friday. We wanted to talk more about when she should be listed for a heart transplant. They will strongly advise when they think it is time, but its hard to guess the perfect time. Kids are waiting longer on the list then they were last year. If we list her too early, anticipating that she could wait up to a year because she will go at the bottom of the list, she could possibly have a match the next day and it would be transplant time, thus forgoing another year she may have had with her own heart. Then the clock starts ticking on her new heart. If we list her too late she may need to get a Berlin heart, in which she will need to stay at the hospital (and she will automatically move up the list). They said it will be outside signs, not an echocardiogram or bloodwork, that will be the best indication as to when to list her – if she is not gaining weight, if she is failing to thrive and develop and grow, if she is not feeling well most of the time, then it is time to get a new heart.

It is tricky to say what is best. Things change after a transplant. For good and for worse. Its hard to know how to decide. I was leaning towards listing her early, but then, I think about what might happen. Mortality rates go up every year post-transplant. I think about her being on the Berlin heart and I am scared about the complications – stroke, brain damage. Maybe it will all be fine. I don’t want her to get a heart transplant. I want her heart to get better. I want it to heal and be normal. I want her to have her heart and be healthy and thrive. That is what I want. That is what I hope and pray for.