Hana's Heart

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.

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

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:

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!

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.

My heart is so heavy. I’m trying so hard. I feel so much pressure – start feeds, give meds, clean vomit, push solid foods, get her to take a bottle, get the eyepatch on for an hour, pump breastmilk six times a day, fortify milk, thaw milk, and then try to get Hana outside where she is happy, preferably with the dog so she is happy too. None of these things can slide, not really. There is the added stuff of making appointments, going to appointments, keeping inventory of and ordering all the supplies needed, making sure medications are ordered and picked up, sending messages to doctors and other care providers. This does not include bottle and syringe washing which we have had so much help doing.

I am sad. I am sad that my dog doesn’t get outside as much. I am sad that Paul doesn’t get all the time that he used to for himself. I am sad that Hana has a sick heart. I am trying to to get everyone’s needs met and I feel like I am failing. All these things are building and on top of it, I am not always gracious. (I like to think that I am gracious sometimes.) I am burning out. I’d like a few minutes to myself that is not in the shower. I know that its hard for a lot of moms to get time to themselves. But I think I just need some time so I can cry all the tears I’ve been saving.

Today was a double vomit day. The first was right after I gave the morning meds. So, I was on the phone with Stanford again. I tried giving Hana half her morning feeds, waiting, then giving meds, but it obviously didn’t work. There was a lot of great help during the day but then ten minutes after some of the help left, Hana vomited again. I think maybe she just gagged again on her pacifier, but it still really bummed me out. After a tough early evening, Hana was so fussy, so I took her on a walk and we sat in a church and I cried. I cried for not being my best self and for not having more to give.

Today started out great. I sat Hana down to eat some breakfast together, we were having yogurt, and she was practically licking her fingers clean. She was definitely licking the yogurt off of her tray, she loved it so much. I was so happy that she loved yogurt so much! Then things turned bad. I can’t even remember all the things that caused it to be bad because this morning seems like three weeks ago. I started her first bolus feed early because I wanted her to finish it before her morning nap, to see if that would help with the vomiting. I was feeling stressed. It can get stressful when you are trying so hard and it feels really important to be successful and things are slipping away. I cried on our morning walk when I thought she was going to vomit. I’m on the verge of tears a lot these days.

Well Hana kept her breakfast down, and twenty minutes later I gave her her morning medication, a little on the late side. Not two minutes after I finished she vomited all over the place. All those meds came up immediately. Luckily there were many hands on deck to help out. I spent twenty minutes on the phone with Stanford coming up with a new plan. I gave the Enalapril thirty minutes later followed by her Carvedilol fifteen minutes after that. The rest of the meds we decided not to give again. We also decided to spread out some of her medications over the day, since I am already giving meds three times a day. Now, aspirin, Aldactone, iron and her second dose of Zantac will all be given together.

I also contacted Hana’s GI doctor and dietician about doing something about her first bolus feed of the day. The GI doctor suggested lowering the volume, decreasing the rate of the feed or giving her two smaller feeds in order to giver her stomach a break first thing in the morning. Tomorrow I think I will try giving her half her morning feed and then waiting an hour and giving the second half. Hopefully that helps.

Today we got some very excellent help and excellent dinner. But the biggest surprise was the new hat. I wrote about Hana’s lost hat a couple days ago and we are extremely fortunate and grateful that a replacement hat is in the works, but today we got a gift from Hana’s best girlfriend, Lilly and its a new hat. Its not just any hat, but a Unicorn hat! We are so grateful!

Our magical Unicorn Hana even topped off the day by eating tons of prunes! Okay, I realize that probably sounds terrible, but the prunes from Plum Organics (and you would expect judging from their name) were very tasty. She also did not vomit at bedtime! (She was, however, very fussy after eating the prunes, I’m cringing over what might happen next.)

Its been a two-vomit kind of day. Yesterday too. At least a pattern seems to be emerging. Every morning this week during or around the morning nap, Hana has vomited. Last night and tonight she vomited at bedtime (all over me), but I think both times she gagged. Today was the first day with the increased calorie fortified milk. I’m not sure that had much to play in things but I do need to watch for signs of dehydration – like less wet diapers. I do wonder if her pooping in the bath means she is constipated from the change. She sure is cute, even when she poops in the bath.

It was a beautiful day today in San Francisco. This morning I was kind of on top of things so I had already pumped and drank my coffee when it was time for Hana to attempt some solid foods. So we had breakfast together. She seemed far more interested in my bran flakes and banana then her piece of banana and pear puree. Afterward I decided to leave everything where it was – pear and banana smeared on the floor and high chair on Hana’s face. Spoons and toys were strewn all over the kitchen. I just left the mess and scooped her and Poppy up and we went to the park for half an hour. I was in my pajamas and Hana was in her pear-smeared pajamas. It was lovely and everyone enjoyed themselves. I think if I don’t learn to just leave the mess and go, I will miss the good things in life and Hana will therefore miss them too.

I did get a lot of help today, family from out-of-town. I even made some baby food – broccoli, cauliflower, mango and beets. When I was cleaning up the kitchen at 9 o’clock at night and I hadn’t yet eaten dinner, I was wondering why I am putting myself through the pain of making baby food. It’s so easy, yet, even small inconveniences can become huge for me. I remembered that I am doing it because I’ve tasted commercial baby food before and its disgusting. I want Hana to taste fresh food, because I’m hoping that will entice her to try eating. I am wondering if I am just putting too much pressure on myself, and inadvertently on Hana, to progress with the solid foods. Maybe I just need to relax more.

I need to relax more. I don’t always want to take a nap during the day, but sometimes I just want to lie down and do nothing for five minutes. I have a constant, low-grade tension headache. I expect a lot from myself. I wonder if I somehow attracted this situation to myself because I like things that are hard. This is hard. But why do I like things that are hard and challenging? Maybe it makes them feel more worthwhile. I don’t know.

Today we saw the feeding specialist again. This week’s appointment went much better than last week. Hana allowed butternut squash to be smeared on her face and she actually tasted it several times. I still think she would prefer to be more independently driven with the feeding, so I may experiment giving her safe things to taste throughout the day. She also improved with the bottle a bit by allowing the nipple to actually go in her mouth and take a few sucks. We also tried a new cup that the feeding specialist had and Hana seemed to really like it (but she likes everything once, right?). We will continue to try the cup this week.

Later, I had a phone appointment with the dietician. We discussed how Hana did not gain weight over the last week and how she has vomited every morning the last three mornings. It’s been after or during the first bolus feed of the day, which also coincides with her naptime. She usually wakes from her nap to vomit or she vomits right after her nap. Today she had a short nap and then vomited all over the kitchen. But anyway, we decided to increase the amount her breastmilk is fortified from 28kcal/oz to 30kcal/oz. For now we will keep the volume the same. We also discussed some additional foods to try – it seems peaches, mango, prune, cauliflower and potatoes are the ones to try next. Both the dietician and the feeding specialist would like her to try peaches. The dietician would like her to try prunes since we are increasing her formula. If the 30kcal/oz doesn’t add weight, then we will need to increase her volume again. We will do a weight check in one week.

I also talked to one of the nurse practitioners at Stanford. Our usual nurse practitioner is at a conference (along with most of the team of doctors). She called to answer some questions that Paul and I had about the window/timing of listing Hana for a heart transplant. We still have many questions, but I am definitely getting the impression that this is not imminent. I worry though, since her BNP level, which I mentioned before, has continued to rise. I did send a message to Hana’s Kaiser cardiologist, just to get her take on what this means (thanks to Paul who got my Kaiser online account fixed!)

Here are a couple of pictures from the last few days:

Today we lost one of my favorite’s of Hana’s hats. We were walking in the panhandle park in San Francisco, Hana in her stroller, Poppy on the leash and I was lost in thought about whether Hana should be put on the heart transplant list soon, maybe even now. I stopped to check on her and I saw that her head had slumped forward because she fell asleep and her hat was gone. Now, if you are wondering why I care so much about a hat, it is probably because you have not seen the hat. (Pictures are at the end.)

I immediately retraced my steps in a hurried pace. It would be very easy to spot her hat. I saw a couple that I had passed before and I remembered they had smiled at Hana so I asked them if they remembered if she had the hat on. They said they did, so from the point of where I passed them to where I realized the hat was gone was not a very long stretch and it would have been gone only a few minutes. I combed the area. I checked the playground in the area. I talked to the groundskeepers. I asked a few parents at the playground. The hat was not to be found. Someone must have picked it up soon after it dropped.

If you are wondering why I care so much about a super cute hat it is because it makes people smile at Hana instead of look at her with concern and then look quickly away. Instead of seeing her NG tube and wondering what is wrong with her, they look at her hat and smile and comment on how cute she is! I know it is just a hat, but its also not just a hat. I know it is just a thing, but it still makes me sad that it is gone.

If anyone finds the hat, please let me know!

Today Hana had a checkup with the pediatric cardiologist at Kaiser. She seemed to think that everything looked good, but she still wants to see us again in two weeks. She said that the blood work wasn’t quite going in the direction that we had hoped and the echocardiagrams were not showing improvement, so therefore, she just wants to keep checking her more regularly, another month is too long to go in between appointments. (We go back to Stanford in a month).

The blood work that isn’t quite going in the direction that we hope is specifically about her BNP (B type natriuretic peptide). On March 9th her level was 411. On March 24th it was 696 and on April 1st it was 899. It is supposed to be less than 100 pg/mL. This is a substance secreted by the ventricles when the heart becomes too elastic. It is elevated because of Hana’s left ventricular dysfunction.

Hana will get another echocardiagram in two weeks, right before we see the pediatric cardiologist again. Her echo’s have been showing no change and perhaps we would have liked to see some improvement. Although I guess they also look for the formation of blood clots too.

Lastly, Hana did not gain any weight since her weight check last Wednesday so I will have to re-evaluate her nutrition with the nutritionist on Wednesday when we have our next appointment. Obviously, something that we’ve changed is working because she is only vomiting every other day, but she still needs to be gaining weight, although not at the rapid pace she had been gaining.

Today we had the least amount of help yet. A friend took Poppy for a walk this morning. Another friend babysat Hana while I went to an appointment for myself and washed a huge pile of bottles, but other than that we were on our own. It was mostly okay, although when Hana vomited it did set me back about an hour. We also did not have anyone bring us dinner and I was wondering what we were going to have when I realized, some time around 6pm, that we didn’t have anything ready! It all turned out okay. Hana got to bed 45 minutes late. We didn’t eat dinner until 9:30 and we finally got done with all the day’s chores at 10:30, but it was manageable! We even managed to squeeze in some bottle feeding attempts while Hana was in the bathtub (and it sort of worked)!

This week we have three more appointments. Other than those, I want to try to get out to jog with Poppy and Hana. Maybe I’ll even attempt to make it to mom & baby yoga. But most importantly I want to practice finding something wonderful about every moment and to visualize Hana getting better, healthier and stronger.