Month: April 2015

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.

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.