Hana's Heart

In the last 24 hours, Hana has vomited five times. This is certainly a new record. Last night, Paul was with her in her room, trying to calm her to sleep. They both fell asleep and at some point Hana pulled her NG tube way out, but not completely out. I pushed it back in and then listened with the stethoscope as I blew a puff of air into the tube to make sure the tube was back in her stomach. Hana did not like this at all, who can blame her, and she coughed and sputtered and then vomited. I gave her a hug and held her. I changed her diaper and tried to settle her back to sleepiness but it still took an hour to get her back to sleep.

This morning I was starting her feeding at 6:30 a.m. I noticed her diaper was fresh as could be, which, of course, means she did not poop or pee all night. It’s the pee that worries me. I am worried about her retaining water, because that could be a sign her heart is not doing so well. Otherwise, she seems normal, I think. But I second guess everything. Does she look a little puffy? I would say no. Is she breathing fast? Sometimes, but don’t we all? Is her grunt just a normal baby noise? Maybe but maybe not? I just don’t know what normal is anymore.

Today’s plan is to take her to Kaiser to get some bloodwork done. They have asked to get the results by the end of the day so we can see what is going on, especially with her electrolytes, if she is dehydrated from all the vomiting.

Sometimes, at night, I am too tired to write. Rose left yesterday morning. Hana threw up yesterday in the morning and the evening. She threw up again this morning around 6am. This seems to be the time to throw up. She had rolled off her bed, slid down the pillows and threw up on the carpet. She threw up again later this morning. I called the Pediatric Cardiology fellow on call at Stanford last night because I’ve been concerned about a grunting/cough sort of noise that Hana has been making. She was making a noise similar to it before all this erupted. This time it is a little different, more like she is constipated. But I called and the doctor asked questions and decided she was okay but to call back if any other signs emerged. Like breathing fast. Babies breathe fast. They breathe faster when they are worked up.

After Hana fussed as she tried settling herself down for her night time sleep, I counted her respirations. I tried using the stethoscope but sometimes she would move and I didn’t know how many respirations I missed counting. At first, her per minute respiration rate was over 60. I waited and kept counting. After ten minutes, maybe less, it was back down in the low 40’s. That’s when I felt better.

But you never really feel better. You don’t really feel better because you just counted your baby’s respirations to make sure her heart isn’t failing. You don’t really feel better because you don’t know, for sure, if your baby is just worked up or is panting because her heart may be failing. Which is it? Worry and sadness follow me around, trailing me all the time, it seems. Sometimes they catch me and then I feel depressed.

I am determined not to be depressed. I remind myself of the lessons I’ve learned – to live in the present moment, to practice gratitude, to be open to all the support and love that others have showered us with. But it certainly takes effort sometimes. It helps to get outside, to get some exercise, to have some time to just be something other than a mother to a baby who sometimes breathes fast and she doesn’t know if her baby is worked up or her heart is failing.

Yesterday I got to go on a run. Poppy went with me because she is feeling better. I had no baby and no guilt, just running in the warm weather. I felt so much better when I returned, rejuvenated. Paul and I had discussed weeks ago that we needed to be the model of heart health, if that is the lifestyle we wanted Hana to choose for herself. Running is part of that. Things like diet and exercise are part of that. But then there are the other things like stress and sleep. Those are important to heart health too.

I think we can help eliminate stress by living in the moment. That is my firsthand experience on how to deal, as best as possible, with stress.  What is really going on in this moment? Do we really need to worry about things that haven’t yet happened? Sometimes, we do need to prepare for the future, but we do not need to live there. There is another part of heart health. Well, there are probably several other parts of heart health, but the one that was on my mind today, especially as I was jogging, was gratitude. I am grateful for another day with Hana. I got to see her smile and laugh and ride in her stroller amazed at the world. That was a beautiful thing to witness. I am grateful for all the amazing and wonderful people in my life. Today I was thinking about all the people who have helped out around the house this week. Several people came and did dishes and cleaned and moved things and did mindless tasks and brought us food and we are so, so grateful. Not to mention Rose being here all week, away from her family in Oregon and working hard and losing sleep to help us. It warms our hearts. I am in awe at the kindness and sincerity of the people who have rallied to help. I am so grateful. You are such an inspiration to me. It warms my heart and that is such an important part to our heart health, the part that is not about diet and exercise, but about receiving. Thank you.

Hana had a pretty good day. She vomited early in the morning and then a little later in the evening. She still has a cough that weights on my mind. It sounds different than before, so I tell myself it is different. We took her out in the stroller, in the big girl seat, not the car seat attached. She loved it! She loves being outside and seeing the world. I need to get her outside more! Unfortunately she also pulled her NG tube out this evening! Fortunately we seemed to get a new one in without much of a problem (other than a squirming, sputtering, coughing, flailing, crying baby).

Today (well, now its officially yesterday) we took Hana to see the feeding specialist again. This time she was hungrier, too hungry, I guess because she just cried and cried. We started her feeding through the pump, just to get some food in her stomach to settle her hunger but it was too late. She settled down when the speech pathologist blew ten minutes worth of bubbles for her, which Hana enjoyed popping. But then she got hiccups. We tried a different bottle and it was a bust. We decided to try again with an appointment in a couple of weeks.

At home, she seems interested in the bottle, very interested, she just doesn’t seem to want to suck. Today we gave her some homemade pureed apples. This happened purely because the apples happened to be ready right at the time when we were ready to try some solids, otherwise it was going to be more avocado. She loved the apples and ate an entire teaspoon with no problems. She does seem a little shocked to taste!

All together, despite the failed feeding specialist appointment, Hana had a good day. She went down easily for naps and was smiling and content much of the day. She still likes to be held a lot. She still wakes up at night when the pacifier falls out of her mouth. I was able to get a couple of naps, which was refreshing. Our dog, Poppy, is doing much better. Paul is still sick. We had help today with meals and cleaning, including Rose who is here another day and has been working so hard to help us get ahead!

It was business as usual with Hana. She ate more avocado. She played with the bottle and sucked a little, but not much. She was very cranky in the evening. We got some really great help here at the house, but we didn’t really make it outside all day. The one big bummer of the day was that our dog, Poppy, got really sick and we had to take her to the emergency vet.

The one thing I really, really wanted to do went up today. It was the special project that I wanted to do in Hana’s room and it comes from all of you. Today we hung up every single card that we received for Hana. Many of them were handcrafted by other children. For me, it was really, really important to display all the love and support that we have received. It is an amazing reminder of all the people loving, thinking, praying for Hana. I really believe it is why she is doing so well.

This is a work in progress!

Here are some photos of Hana from today:

Today was a beautiful day in San Francisco. We (me, Hana, Poppy and my friend Rose who is here from Oregon to help for the week) were able to get some time outside. I really felt strongly that Hana needed time outside. It was a rough start to the day – she vomited a little around 4:30 am and then again (alot) mid-morning. The second time she vomited all over me. I decided to put her in the bath after the second vomit and she was in there less than a minute when she had an explosive poop in the bath tub! On top of that, the dog is sick and has been vomiting too.
Today we took Hana to a feeding specialist who is a Speech Pathologist. It was amazing! She took some warmed breastmilk that I had brought and put it in a bottle we brought as well. Then she took a toy and the bottle and essentially, “played” with Hana, getting the bottle closer and closer to her face and then lips. Finally, Hana took the bottle and had 40 good sucks. It was the best I’ve seen her do since we left the hospital! We kept doing this and the speech pathologist explained the cues Hana was trying to give me, like batting away the bottle. Hana did start to cry and fuss after several minutes and she explained that it could be her acid reflux bothering her. To combat this we will continue the Zantac, since it takes several weeks to begin working and we will try adding rice cereal which will “weigh down” the milk and keep it from coming up out of her stomach, causing pain.
We left feeling very encouraged and enlightened. We have some new tools and tricks to try. I feel like there is some real hope that she might take the bottle (and maybe even get the NG tube out too, maybe…). We are going back on Friday to try again and also to work on giving Hana some purées. Today we gave her more avocado and she did really well with it.

Today I got a lot of help! At one point there were three people here! We were really able to make a lot of progress and I was able to start opening a backlog of mail. We also got started on a very cool project for Hana that I hope to share tomorrow. Lots of packages arrived. A neighbor and friend walked Poppy. I had a good night’s sleep (relatively speaking, I was still up six times in the night) so I felt pretty good. Hana had a good day too. She did not vomit, although she seemed a little gaggy at the end of the day. We have our medicine area all set up and are getting organized. A friend, who is also a pharmacist, came over to give me pointers on getting Hana’s medications drawn up and ready. Tomorrow we meet with an infant feeding specialist who is also a speech pathologist.

Tonight, after Hana was asleep, I sat in the glider in her room and watched her. I felt sad. Earlier, I thought she was breathing fast, so I counted the number of times her chest rose and fell in one minute – it was 41 times, which I guess is still normal, even for resting. She looks so normal, she acts so normal, but I worry about the things that may be going on that I don’t understand well enough. That’s how it was before. She was in such a fragile state and I didn’t know, well, I didn’t know how bad it was. But she seems so good, when will that be enough to stop the worry?

Today and yesterday we started to get some more help. People brought food and came and helped do things around the house. Even though many of the tasks were very simple, like washing bottles, it made a huge difference. Not only does it lessen the stress and burden, but it gives me more time with Hana. I’m really needing that right now. I feel like the last several weeks were so harsh that now we need some extra time to bond. Hana has also been very clingy to myself or Paul, so maybe she is feeling similarly, or maybe she is just going through what normal six-month old babies go through.

Hana, temperament and health wise, is about the same. She vomited last night and this morning, but I also think I’m starting to lose track. She does have smiles and giggles for us and that is a lot of fun. Today I talked with a nutritionist who had some advice about Hana’s weight gain and what solid foods to introduce Hana to. This morning we actually gave Hana her first official solid food – avocado! (Her first unofficial food was lemon juice!) She was very interested and licked it right up (and played with it and smeared it all over). We will try some more tomorrow! As for me, I’m actually much more well rested because I slept through one of Hana’s middle of the night feedings, so I got four hours of sleep in a row! It really made a difference!

Hana had a fussy night and I think I was up every ten minutes or so for a couple of hours. Maybe this is her new normal? Maybe this is her acting like the six-month old that she is? It’s funny, when we brought her home from the hospital, part of me thought we would be trying to get her back to the baby she was when all this started, forgetting that she is a month older! Of course she is going to be different, she is now six-months old instead of five.

It was a good day – she had smiles and laughs for us! She also had some major poopy diapers (the kind where poop shoots up their back). She also vomited before bed. So, I guess this is the new normal, another day with Hana. She didn’t nap well at all, one time she rolled off her bed (we have a lowbed, which is a infant safe mattress on the floor instead of a crib). She drooled a lot, so maybe she is teething again. She is a lot like a normal baby, with normal baby things and you could almost forget that she has a very sick heart.

I write the above sentence and it feels eerie, the part, “she has a very sick heart.” I wish I were saying, “She HAD a very sick heart.” When I see her doing so well I have confidence she is going to be fine. I don’t know if I am setting myself up for disappointment. I don’t want to take the wellness she has right now for granted. I don’t want to forget many of the things I’ve learned and discovered and felt and feel. We have her today. When I was putting her down for bed. I felt her little body under my hands as I patted her to sleep. I kissed her and I felt grateful that I got another day when, at one point, I thought I wouldn’t get one and I felt lucky and grateful that I had another day with Hana.

My mother left around 6am this morning. We are so grateful for all her help. I don’t know what we would have done without her. Some time after Hana’s 6am feeding and when I finally got up around 8am, she vomited in bed. I found a big wet spot later. But despite that we did okay today. I got to take a bit of a nap. It was really, really warm in San Francisco and we took some time to sit outside a coffee shop and talk. In the evening we did a lot of the daily chores my mom had been doing. Even with the two of us, it took quite a while. I think Paul especially was surprised how long it all took, since he had been working while most of that kind of stuff was being done. Today, I was feeling a little depressed about everything. I’m so grateful for all the help and support, but the whole situation is still daunting and, in some ways, we feel a bit trapped or tied down. It is kind of a big deal to go anywhere. It’s hard enough to get time to do things when you have a baby, but now, I feel like our radius from the house that we can travel is much, much smaller. I am determined not to let this get the best of me. I just don’t have the time or energy to be depressed right now. Do I get a choice?