Hana's Heart

This past week has been a good week. Hana seems like she is in a good mood most of the time. We’ve gotten outside a lot more. She only vomits about every other day, which is more than half what she used to vomit. Things are getting easier. I am getting more sleep and feel calmer.

I am continually reminded how grateful I am to so many people. It may be old high school friends who sent gift cards or brought us lunch while Hana was in the hospital or someone from church who sent us dinner or even someone I don’t even know, who stopped to read this blog and donated to the GoFundMe campaign. Its all the thoughts and prayers and effort and love that I find truly amazing and wonderful. It has made all of this so much easier, I will never be able to fully express that. Thank you for being part of that. Thank you for being so good to us.

We took Hana to the feeding specialist again on Wednesday. Not to be dramatic, but it was kind of a failure. Hana has gotten too smart about the bottle and just won’t fall for any of the “tricks” to even put the nipple in her mouth. In fact, she really doesn’t want anything in her mouth or near her mouth. She cried and protested a lot. I would walk out of the room and down the hall, where she would calm down but as soon as we went back into the room she would cry again. We even tried going into a different room but I think she just associates everything in the that building now as some sort of unpleasantness. It is the same place we go for her labwork, echocardiagrams and all Kaiser doctor’s appointments.

The feeding specialist said she was going to try to see if she could get Kaiser to agree to send someone to our home, where she thinks we would have better luck. She is also going to try to get a joint appointment with herself and the physical therapist to work on good feeding positioning. We are also going to take a break from the bottle for a few days but continue with the solid foods. We are going to give the increased dose of Zantac more time to start working before introducing more tools in hopes that she doesn’t associate everything that goes in her mouth with reflux pain. I hope something works!

I would still say that vomiting has gotten better, or, less. Hana did vomit a lot everywhere yesterday which was a big mess. In generally things are definitely getting easier. Also, I am giving myself a little bit of a break this past week. I’m not pumping quite as much, or drinking water and fenugreek tea. I’m not trying quite so hard with the bottle. I’m feeling a bit burnt out. But I can’t let that go on too long, or let things slide too much.

Yesterday, I finally got to an appointment for myself with a primary care doctor. When she asked about a concern I wrote on the questionnaire, “stress of caregiving” I started to cry while trying to tell her about Hana. Then she started to cry. She has an 18-month old son. I think that if I stop too long at any given moment and really give myself a chance to be still I could cry for a long time. I just don’t have time to really let myself do that right now.

Pre-vomit

Post-vomit

We recently made some changes for Hana. We decreased the volume of fortified milk that she gets during the night from 480 mL to 360 mL. It now runs until about 5 a.m. Since doing this she has thrown up less during the early morning. We also changed the formula used to fortify her breast milk. Before she was getting Pregestimil. Now, we are trying out Similac Advance. So far, it seems a lot more palatable (to me) but it is still being fed to her through the NG tube. Lastly, she is getting the higher dose of more concentrated Carvedilol, which she seems to be tolerating just fine.

In other news, Hana is refusing the bottle more than ever before. The bottle I thought might be our answer repulses Hana. All other bottles are just as bad. This is so incredibly frustrating for me. I often feel like a bad mom, that somehow this is my doing. I just don’t know what else to do. The introduction of solid foods seems to be going okay, but I somehow feel she should be more interested, so maybe I am doing something wrong there. I don’t know how many more tricks there are to work with.

Lastly, I am trying to get out more with Hana. She loves being outside so much that I feel it is important. I do feel guilty taking the time to enjoy myself and be outside taking walks with her. I feel guilty because people are giving up their free time to come over and help do chores. I feel like I should just be doing chores too and it is not fair to them for me to have “free time” while they are giving up theirs to help me. But I think I probably need to let that go.

Yesterday we had three appointments – pediatric ophthalmology, dietician, and immunization. The ophthalmology appointment was over two hours, or I should say, we were there for two hours. Hana threw up in the waiting room all over herself, my shirt and inside the diaper bag (the rest I caught with a towel in the diaper bag). A lady nearby offered help, which was nice, but the vomit wasn’t projectile so it wasn’t so bad. Hana doesn’t seem to do well with feedings and car rides. The end result was that the doctor is ordering that she wear an eye patch over her good eye for one hour every day to force her other eye to work a little harder. She has a hemangioma on one eyelid, which is causing a slight astigmatism in that eye.

Then I talked to the dietician about changing up her feeding. We are going to try a bunch of new formulas to see if one of them is easier on her stomach then Pregestimil which is what the hospital sent us home with (and then Kaiser sent us thirty-some cans of the awful smelling stuff). We are also going to reduce her night time continuous feeds to 360mL over seven and a half hours. We are going to start trying to introduce solids foods twice a day since Hana is so behind on eating solid foods. It is important to try a new food every two to three days.

The last appointment was to get Hana’s rotavirus shot since that is the one they didn’t give her before leaving the hospital because they gave her MMR vaccine instead. When I got to the injection clinic they said she didn’t need to shot, that she already got two and that is all that is needed. After a good amount of confusion, a phone call to Stanford, an attempted phone call to UCSF to see what type of rotavirus shot they gave her, it was decided that she did not need the rotavirus vaccine, she was covered and up to date on all her immunizations.

So all in all we had seven appointments this week. It has been a long week. We’ve had a lot of amazing help but we’ve also started to manage on our own, which is going okay. Sometimes it is crazy and hectic and stressful and I wish another person were there to come running with their extra set of hands, but it all eventually works out. This coming week my goal is to get outside every day, maybe even twice a day and to start getting Hana doing more regular seven-month old baby things! For now, I’m exhausted and I feel like I could sleep for ten hours (for me, that’s a lot!).

Happy Easter!

Hana had another checkup at Stanford yesterday. The consensus was that they “had nothing but good news”, but her heart is still the same. So that means that Hana looks good and her heart is still very sick. They aren’t concerned about the grunting noise unless she starts to do it continuously, while at rest. They said the echocardiagrams are just to check for blood clots that may be forming, not to really tell if her heart is doing better. They said the best indicator of her heart is her outward appearance and that seems to be excellent. They doubled the amount of carvedilol she is taking, which they had been planning to do all along. They decided to decrease the volume of fortified breast milk she is getting. Her weight gain in great, despite all the vomiting and she doesn’t seem to be retaining fluid, which is good.

The doctor asked me and Paul to start thinking about whether our preference would be to list Hana for a heart transplant early or late. Not that she needs a transplant now, because she is looking so great, but that she still will probably need one some day. (Although, some kids still have hearts that recover and they don’t really know why.) There are pros and cons to listing her for a heart transplant early or late. If she is listed “too early” then she may get a transplant “too early” and then you deal with all the downsides of transplant earlier than maybe was necessary. Four years after a heart transplant the mortality rate is 30%. If you get a transplant too early, then you increase the chances that you may need another transplant. But, if you are listed for heart transplant, on the late side, then you may get too sick while you wait and need a Berlin heart. A Berlin heart is a mechanical device that is surgically implanted (and you have to cart it around with you everywhere you go). It requires open heart surgery. Twenty-five percent of patients form a blood clot and have a stroke from the Berlin heart. The average waiting time for a heart for children Hana’s age is five or six months.

When we got home I had to run to the pharmacy. This was after I had spent a good amount of time on the phone trying to chase down her carvedilol, which I had requested on Monday and was still not ready. After dealing with a very unkind person on the phone who was practically yelling at me and scolding me, I walked down to the Kaiser pharmacy, where I was told her carvedilol would be ready. When I got there, it was certainly not ready and they didn’t seem like they were going to help me get it today, since her dosage had been increased they had canceled the previous refill and told me that it would be another 72 hours before the new prescription for it was ready. I was completely out of carvedilol. I would not have any to give her that evening. I started to cry at the pharmacy counter. I just felt beaten down. I felt like I had tried to do everything right, let everyone who had the power to make things happen know what I needed and when. I felt like I was running around practically begging for things in order for stuff to be taken care of. I was exhausted. I was frustrated. But mostly I was just really sad.

When you cry in public people treat you differently, especially when you are trying to pick up a heart medication that is special ordered as a solution because it is going to be given to a very young child. The woman told me to sit and she would personally come and get me when the carvedilol was ready. She also said she would transfer over all the other medications so I wouldn’t have to wait in line at the main pharmacy. The pharmacist came out and said he would get a rush put on the new Zantac prescription so I could take that home too. I appreciated it so much, but I still cried. I just couldn’t stop crying. When the prescriptions were ready I went back to the counter and paid for them. The woman at the counter said to keep the faith and she would keep Hana in her prayers.

I was in pain and people saw that and then were kind to me. I needed that kindness. As I was walking home it made me wonder how many of us are walking around in pain and we just think they are a jerk or worse. Really, they may just be in pain. If we could see their pain then we could know that what they need is some kindness. But we don’t usually share our pain, so we don’t know to be kind. Or, we could assume that when someone is a jerk or whatever word you want to call it, that maybe the way we really need to react is to treat them with kindness to help their pain too.

The night was pretty good for Hana. She started fussing around 6:30, or earlier, this morning and I thought it was interesting that she goes to bed before the sun goes down and she wakes up before the sun comes up. This morning her diaper was so saturated that it had leaked all over the sheet. So, I changed the sheet. Unfortunately she started to vomit while Paul was in the shower. Her NG tube started to come out of her nose with each retch. I kept trying to push it back in and it would make her retch again. Finally, she had one big retch and the tube just flew right out. I’m sure that’s what happened yesterday too. One split second it was in place and then, in the blink of an eye, it was out.

We decided to wait again to put the NG tube back in. I wanted to try a bottle again, but I couldn’t wait too long because Hana needed her morning meds, eventually. Our friend and neighbor came over again around 9am and we got the tube back in. It is definitely a two person job. I tried giving her a bottle before putting the tube back in, but Hana wasn’t having it. I can’t remember quite how the day progressed after that. She went down for another nap and then vomited again around 10:30. Of course, I had already changed the sheets, so off the new sheets came. There was an hour where it was crazy – baby vomiting, vomit everywhere, carrots steaming on the stove, me running around trying to get us ready for an appointment. But friends showed up and everything turned out pretty much ok. Lots of stuff had to wait for hours to get done.

We went to see the feeding specialist again. This time I brought the Bumbo seat and tray, our new Adiri bottle and a carrot puree. The carrot eating went well, according to the feeding specialist. Hana is delayed in her solid food eating, but she seems to be progressing nicely. I was glad she said it was positive, because I kind of thought it wasn’t very successful, so it was good to get a different perspective. The bottle feeding was labor intensive. It involved blowing bubbles and popping them, singing songs, playing with puppets and other toys. I will continue trying with the bottle because I want the NG tube gone, but it requires a lot of patience and time. The feeding specialist pointed out some things I hadn’t noticed, or didn’t understand what they may mean – like Hana arching her back is probably her reflux bothering her. She also mentioned going to a physical therapist to help with some of her body positions while drinking and eating so that she can get in a more comfortable position. Her development doesn’t seem to be too delayed because of the hospital, but certainly some more strength in certain areas could help with eating.

I was exhausted after all that but we still had to get bloodwork done. That was awful this time. They had to poke her twice and she screamed and screamed. My poor baby. She went immediately to sleep when we got home. That’s what I should be doing right now, sleeping. Tomorrow we go back to Stanford for a check up. I hope it goes well. I hope they can help me rest easier and with more peace. But maybe the part about peace is up to me.

We had lots of great help today and a delicious dinner was delivered too. It is really beautiful how people are willing to help. These people inspire me!

Today (well, I guess now its technically yesterday) started with 6:30 a.m. vomiting and sheet and mattress pad changing and pulling out of the NG tube. Paul had to leave early for work so I am there trying to change sheets and clean up vomit from the baby and eat breakfast and maybe drink coffee. Hana is fussy early and we waited to put the NG tube back in to give her some time without it stuck down her throat. I try breastfeeding which is rejected. I try giving her the bottle which is rejected. This bottle is the only one that has been sort of working and now the bottle is leaking everywhere because yesterday it fell from the drying rack and cracked and you can only buy it online.

I am frustrated and Hana is crying and then I cry to. We both cry together. Then I lay next to her on the half made bed and pull over a soft, puppy-heart blanket that was so kindly given to us and we fall asleep. I wake an hour later and my friend and neighbor, who is an amazing giver, comes over and I put in Hana’s NG tube and giver her medications and start a new feeding. We are an hour behind and I haven’t pumped yet and I don’t care too much because I just needed a little bit of a break. It’s takes a lot of extra effort to do things when your heart is heavy.

The day got better. The same friend and neighbor was over much of the day and many of the things got done and I was able to get some more done on the mountain of papers that had accumulated on my desk. Late in the afternoon I took Hana to the GI doctor. Mostly we talked. It was the doctor and a nurse and a nutritionist. We talked about the formula Hana is on and why. We talked about why she is getting 1 liter a day of fortified breast milk and why she gets fed when and how much. We talked about Zantac and fluid restrictions and G tubes and why they don’t really want her to get one because she would have to go under anesthesia to have it put in place. We talked a lot about vomiting and the rhyme or reason.

Then Hana got fussy and vomited all over me and the floor. At least they got to see first hand what was going on. He seemed to think the NG tube was the culprit. At the end of the appointment, I left only knowing that her Zantac is being increased and that a lot of people care and will work with the Stanford team to figure out what changes they can possibly make. I also decided that I need to start including a change of clothes for me in the diaper bag. Tomorrow will be better. We see the feeding specialist again.

We got everything done by 8pm and got to relax! Its the first time we were done before 10pm. It must be a sign that tomorrow will be better.

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)!