A Lot Going On

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.

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A Vomity Good Day

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.

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When To List

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.

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It’s Not Fair

Today, I tried switching up the routine again. I was afraid that Hana’s morning meds were possibly bothering her stomach, so we switched up the feeding med routine. Ultimately, it resulted in Hana vomiting. Tomorrow I will try another combination, hoping that something will inspire her to eat real food. She has even started refusing yogurt and prunes. She just doesn’t want anything even close to her lips. We still try videos and dolls, but maybe it is time that will be the answer.

Other than that, it was a pretty typical day. Paul and I are preparing to talk to the heart failure/transplant doctor tomorrow about some questions we have regarding when to list Hana for a heart transplant. This evening, we reviewed the information that they gave us at Stanford. It makes me cry. You look at the statistics and it makes you cry. You look at complications and it makes you cry. You look at mortality rates and post-transplant care. The problem is in the numbers. 93.9% survival rate one year post transplant. That sounds pretty good. Except that you have once already found yourself in the very, very slim minority. Your baby is already that very rare case that is the 0.0001% or whatever it is for babies that need heart transplants. You know just how easy it is to be that 6.1%. Or, four years post-transplant, how easy is it to be that 30% that doesn’t survive. It doesn’t feel fair.

I try to not dwell on fairness because I know that it is irrelevant. But my heart is not logical. You ask, “Why my baby? Why my only baby, my only child.” Of course, this is silly to think this way. It is just not the dream I had for Hana.

I wonder then, what dreams Hana has for herself. I wonder why, in this life, in this time, why?

But she is such a sweet, sweet soul. Even when she refuses to eat anything by mouth, she is sweet and strong and determined. It is the greatest honor of my life to be her mother.

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I’m hoping to inspire Hana to eat by inviting her friend to mealtime!!

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Weight Check

Today was our first day since we changed out the NG tube. So far, no leaks except when Hana grabbed it during a feeding and pulled the feed bag tube out of her NG tube port. Oh well, I imagine those things will happen more and more often as she gets older.

Today was also the first time in four days that Hana vomited. She vomited twice, although not too much each time. Both times she was getting her clothes changed and both times she’d had half a bolus feed, which was currently paused. The second time was worse, she was fresh out of the bath, no diaper yet and vomit came out of her nose (as well as her mouth). She recovered quickly and then we played awhile before bed.

We had a weight check and a feeding specialist appointment today. I am sad to report that she did not gain any weight again this week. She will have another weight check next Wednesday. If she does not gain weight by then, we will probably have to increase the volume of fortified breastmilk she gets. This puts the pressure on me to produce more, since I am just barely keeping up.

The feeding specialist appointment wasn’t terribly successful. She did okay with a teething cracker but the purée and the bottle or cup was worse than last week. Later in the day I had her watch a YouTube video of a baby eating and then I had her try some broccoli/Apple purée. She actually had a few bites. We tried again in the evening with cauliflower. I gave her a soft cauliflower floret which she put in her mouth and did okay with. She also took a few bites of the purée too. I did haver to blow a lot of bubbles to distract her when she got upset.

We will try again tomorrow. I’m also trying to get more serious about teaching Hana some sign language. I need to get better at using the signs I know. Today we worked on diaper, water, sit, stand, up, finished, hungry, spoon, food, bath and clean. Maybe we can get to a point where Hana can tell us how she is feeling or what is going on with her so we can better help her.

Here are a few NG-tube-free photos:

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NG Tube

Hana had a good day yesterday. She spent a lot of time outside, not just with me. She had another vomit-free day. I actually took Hana and Poppy jogging with the stroller, which was very nice, although short (and crowded, because of the crowds headed to Golden Gate Park for 4/20). Today was another vomit-free day too.

We are having a real problem with her NG tube. The ports continue to pop open and contents leak. Sometimes when this happens, what looks like stomach contents, starts to pour out. Its almost like the stomach contents are pushing the ports open. She often fusses when this happens and I imagine she doesn’t find it too comfortable. Last night, 2/3 of her continuous feed leaked out onto her bed before I realized it. Maybe the decreased volume at night is why she didn’t vomit today. Still it is the longest we’ve gone without vomiting since she’s been in the hospital.

We are working with the case manager to find a different NG tube. Today we took out her old one and put in a new one. The old one had been in for 12 days, which really isn’t all that long but we are going to see if maybe it was just a bad tube (I’m very doubtful). I wish Hana would eat better and take the bottle, then we could just get rid of the NG tube all together. From the discussion boards on the Children’s Cardiomyopathy Foundation site, it seems this is a very common problem, so we are not alone.

Today we took Poppy to the park and had a nice walk. It was damp and chilly but it was still nice to get outside!

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Eight-Months Old

Woe is me. Those are three words that I’ve always despised, yet I think I’ve talked myself into a corner of feeling sorry for myself. Just acknowledging that makes me feel embarrassed and ashamed, but I’m going to stop there. I would like to have a better, positive, healthier attitude. It is true that there are a lot of moving parts in my life right now. It is true that I probably need more rest. It is true that Hana has a sick heart. It is true that I have not yet been able to mourn all the things that I had or thought I had and have lost. I do need to take the time to let some pent up emotions run their course. But, I can’t let this consume me. It’s not good for me and it’s not good for Hana (or Poppy and Paul).

So, now I’d like to have a healthier attitude. I’d like to celebrate the things that have gone right. I’d like to accept our new normal and continue to seek moments of joy and happiness.

Today Hana turned 8-months old! She slept fairly well and was pretty cheerful when she woke up this morning. I gave two of her medications and then we had some yogurt, which she loved again. Then, 30 minutes later, I gave two more medications. I waited until 10am to start her first feed of the day and I only gave her half. An hour after that I gave her the rest of her feed. We spent the rest of the day trying to get back on her normal feeding schedule. But she didn’t vomit once the whole day! It is the first time in a week!

I also got to take a nap today which really made a huge difference for me. We took a nice walk, Hana had peach and prune baby food, she napped poorly and cried when we tried to put her in the bath (with bath bubbles, I don’t get the sudden crying). We are still having a problem with her NG tube leaking. The tube has two ports on the end where we hook up her feeds and where we administer meds. One of the ports keeps popping open. When that happens, stuff leaks out and makes a mess. Sometimes meds leak out (so far it has only happened with Zantac and iron). Sometimes the milk from her feed leaks out. It often makes Hana cry. Hopefully we can get this worked out tomorrow with our case manager at Kaiser. Maybe it is just a matter of getting a different type of NG tube.

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