Month: March 2015

My sister left this morning, so early, that by the time I sit down to write this it feels like she’s been gone for days. But for the first time, I feel like I am getting a handle on things. I did get a lot of help today – four helpers, a housecleaner and someone who brought us dinner. But it feels like maybe the dust is settling, except that with Hana’s health I feel uneasy. She vomited twice today – once at 3:30 a.m. and again at 10 a.m. I fear she is breathing too fast or too heavy. I wonder if she is too cranky, is it poor naps or something else. I just wish I had more peace of mind. I wish I knew more, could tell the difference.

My heart feels heavy and yet I can’t keep living this way. I need to find a way to change my outlook, my perspective. Sometimes it feels unfair – I just wanted a healthy baby. But, I tell myself, Hana is my baby and as she is who she is, I will gladly do whatever it is she needs me to do, to be, as her mother. It is my honor. I don’t know though, the mind can go to dark places some times. The heart can ache. I want some happiness, no, some more happiness. Its time to go on a hunt for it, now that I am feeling like life is “caught up” a bit.

This week we have lots of appointments. Tomorrow Hana sees the GI/Nutrition specialist. Wednesday Hana needs more lab work and we visit the feeding specialist. Thursday we go back down to Stanford. Friday Hana see the ophthalmologist and we talk to a nutritionist. I hope our appointment at Stanford gives me some peace of mind.

The days are long. My sister and I look at each other and wonder how it got so late. It was the same when my mom was here and Rose too. After a first continuous feed night which resulted in a very fussy Hana, I still felt exhausted from lack of sleep. Last night, she was quiet and I finally got more rest. I am getting up in the middle of the night to add fresh milk to her feeding bag and then to pump, but I think I got close to four hours of sleep in a row.

The long days are made easier by the wonderful help we’ve received. Everything from washing bottles to walking Poppy to providing meals, it has been amazing and so appreciated. Sometimes I am very scattered feeling and I am concerned I am not doing a good job at showing my appreciation to those who come to help. Please know – those of you out there, that I really, really appreciate it! I do think that a rhythm may be emerging, and certainly some routines are established. It is still hard! Today we got done everything at 10pm and that was the earliest we’ve managed to be cleaned up and ready for the coming night and day.

Hana has been good, I think. She is still making the worrisome grunting noise. She is still vomiting although she is back down to about once a day. She vomited a huge amount yesterday while I was waiting in line at the pharmacy at Kaiser. I was holding her and I caught, in a reflection of glass, the vomit shooting out of her mouth and on the floor. Luckily, it missed my backside, but the aftershock vomit got me all over the front of my shirt. Some very kind people waiting in line cleaned up most of the vomit. I didn’t have time to be embarrassed, I was too worried about Hana and her choking or continuing to vomit. It was still another twenty minutes before we got our medications.

Hana’s pediatric cardiologist called today to check on Hana. I was concerned because she seemed kind of warm and one of the three thermometers I have indicated she had a fever of 100.2. But then I had the fun of doing a rectal thermometer reading which was showing Hana as the typical 98.6. I don’t know what to say when people ask how Hana is doing. She is doing ok, well, good if you consider the fact that her heart is enlarged. She looks and acts well, except vomiting fairly often and getting all her food through a tube. Her heart still seems to be very, very sick. But I want to sound more positive and hopeful and not so realistic. I want to say she is doing incredibly well, she is surpassing all expectations. That is what I want to be true.  I sometimes feel that being realistic is like a ball and chain, it is dismal and pessimistic and a surrender and it keeps you down. It is not where I want to be, maybe because its hard, but maybe because I am afraid of hope. Can I allow myself to have hope? Is it safe? Do I deserve it? My heart and my mind are at odds. But I want to feel hopeful. Maybe it is not safe and whatever twistedness in my brain brought up whether I deserve it or not, I am going to tell myself that I do. I love that baby.

Yesterday’s bloodwork came back the same except for the test that measures the elasticity of the heart. The result was higher than before Hana was discharged from the hospital. I don’t know if that means her heart has more elasticity or not, but it was elevated above normal and now it is even higher than it should be. But, as the nurse practitioner (who I think is great) said, it is not “crazy high” and they have lots of patients who have much higher results.

So all of this was discussed with our pediatric cardiologist at Kaiser, with whom we had an appointment scheduled today. First Hana had an echocardiagram and then an EKG. Then we had an exam with the doctor. Hana wasn’t crazy about any of these things. She did cooperate by making her grunting/cough noise for our doctor so she could hear it for herself. She said there wasn’t really any change to her echo or EKG. Hana’s weight went up from 7 kilos to 7.235, which is good, except that she has been vomiting, so maybe her weight gain is too much for a vomiting baby. She assessed that Hana doesn’t look like she is retaining fluid and her liver felt fine.

The doctor will call me on Friday to see how Hana is doing. She called the nurse practitioner at Stanford twice during our visit so that they could discuss changes together. She said that no one really makes a decision to change things on their own, that it is always a team decision. They decided to increase her Lasix to 1mL twice a day. They decided to leave her Zantac as it is. She talked with the GI/Nutrition doctor and had me schedule an appointment with him next Tuesday to discuss her calorie intake, vomiting, and the formula type used to fortify the breast milk. She ordered more bloodwork for next Wednesday, one day before I’ll be taking Hana back to Stanford. She wanted to see Hana again in three weeks, which would be two weeks after our appointment at Stanford.

So, I wish what was happening was her echo showed that her heart was returning to look like a normal heart. I wish she was confident that I didn’t need to bring Hana back for a month. That’s what I wish. Maybe that wish will still come true, just not this visit.

One great thing for me that came out of this visit is that we are changing Hana’s night feedings to continuous feeds. The GI doctor may have a different protocol, but until next Tuesday we are going to give her the same amount of milk over the night, just continuously. That means that I don’t have to get up every couple of hours to get a feed ready or turn off the pump! This means I may get more than two hours of sleep in a row! The disruptive sleep is really starting to weigh on me and my brain is having a tough time. My eyes too. I’ve been having a hard time seeing close up and I feel like my eyes are really strained. I am excited for more sleep tonight (hopefully)!

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?