Good Vibes

I’ve been too tired to write updates! I’ve been falling asleep while breast pumping, something I didn’t think was possible. But there has been a lot going on.

First, Hana saw the GI doctor and dietitian. From that they decided she should start on some pediatric formula since her nutritional needs have outgrown the infant formula now that she is over a year old. We also scheduled some weight checks. A few days later six cases of Pediasure arrived. This stuff smells disgusting. It is made to be very sweet so that it entices kids to drink it, but it really turns my stomach. I slowly started adding it to Hana’s feeds, mixed with the regular fortified breast milk. I started with 25% and a couple days later went to 30% and a couple days later up to 35%. That’s when Hana started vomiting.

I ordered a can of an alternative to Pediasure, called Pediasmart. It only comes in powdered form, whereas Pediasure comes as a canned liquid (it also comes in a powder). I swapped out the Pediasure for Pediasmart and the vomiting stopped. Then we had to scramble to find more, this stuff is not easy to find in a retail store! We eventually ran out of Pediasmart so I substituted Pediasure back in for one night and she vomited alot, so that’s the end of me attempting to give Hana Pediasure. The next day (Monday) our amazing GI nurse proactively anticipated that we would run out of the formula before the supply she ordered for us arrived. She called all over the city trying to find some, talked to colleagues and the Pediasmart rep and she dug up a can of chocolate Pediasmart for us!

Hana had a weight check on the same scale as her last weight check and she gained 130 grams over 18 days. That’s 7 grams a day, which I think is pretty okay. They did say that kids’ weight gain generally slows to 3 or 4 grams a day after they turn a year.

Feeding by mouth has been going terrible. I should say, there has been no progress whatsoever. Our feeding specialist talked about getting Hana into a feeding program, one where they come to the house. At first I was excited but then I wasn’t sure if I liked the idea. I’ve heard mixed things about the feeding program that we would be referred to. I’ve been thinking about this feeding stuff a lot. It consumes my brain power. After much deliberation I decided that I think Hana just needs more time. I feel pretty confident about that. I think her brain is at work figuring out the world (including learning to walk) and even though we don’t see progress in her eating, I think things are at work inside her head.

Of course, I still want to give her opportunities to show us she can eat and drink, but I can’t be stressed about it. Or anxious. Or have expectations. She will do it  when she is ready. So, I plug along, packing snacks and milk for her milk bear. I’ve mostly given up trying to have her “eat” while sitting in her high chair. I try offering food while we are out and about – at the park, in the stroller, at the playground. But mostly she is not interested, or she just wants to throw it on the floor.

Then on Sunday it got really hot in San Francisco. It was over 90 degrees! I made sure to offer Hana lots of cold breast milk. She drank and drank. She drank 380 mL, that’s almost 13 ounces. Then she did it the next day too! The day after that it cooled back down to our normal 65 degree weather and she drank 300 mL (10 ounces). The next day I tried adding some Pediasmart to the milk and her drinking slowed significantly, but she still drank more than 180 mL (6 ounces) which is more than she has consistently been drinking. I went back to straight breast milk the next day and she drank 290 mL and then 360 mL yesterday. I know that eventually she needs to eat or drink something more high calorie, but for now I want to see if she will consistently drink that volume.

At our feeding appointment this past week we went at a new time – in the morning, versus lunchtime. Hana “ate” a lot more yogurt than she has lately. She also tried some apple flavored crunchy snacks. She did this for an hour before she wanted to be done. It was great progress! Some things to note – she is perhaps still experiencing some reflux, she seems to be constipated and gassy from the new pediatric formula and she drank some milk so fast that she threw up. I think its because some went down the wrong tube and she coughed and threw up rather than her stomach bothering her. But either way our feeding specialist is going to discuss all these issues with the GI doctor and dietitian.

We have been getting out a lot more. I think it is good for Hana to be out, she seems to really thrive when she does. Its actually quite amazing. We go to the California Academy of Sciences every Tuesday morning. We go to the pool once a week and music class twice a week (to help stimulate her speech development). We go to the playground almost every day and she watches the other kids and climbs things. She loves to climb!

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Recently Hana was mentioned in an online article about rare diseases for Children’s Cardiomyopathy Awareness Month (which is September):
https://rarediseases.org/hope-for-kids-with-heart-disease-september-is-childrens-cardiomyopathy-awareness-month/

Hana turned 13-months on Saturday and she also took her first steps! I’m hoping that once she really starts to walk that she will want to shift her focus more on learning to really eat.

There is nothing new to report about her heart. She wore an EKG holter for 24 hours which they said she would need to do twice a year. Everything came back normal. When she takes a long nap, two hours or more (she has never napped longer than 2 hours and fifteen minutes except in the days right before she ended up in the hospital) I get anxious. Yesterday was one of those days. Is she napping so long because of her heart? I can spiral out of control very quickly. I’ve been working on some things to help ease that anxiety. Hana does not need anxious vibes right now (or ever, really). She needs good vibes! Calm, relaxed, nurturing, positive vibes. We hung up a homemade tree in the house for Hana’s birthday party. It is still up! We cut out dozens and dozens of paper leaves for the tree and asked people to write well wishes (or bring their own “leaf” to add to the tree) for Hana. I’ve been starting to add my own good vibe, well wishes to the tree. It is a good practice for calming my anxiety!

If anyone would like to add a leaf to the tree, let me know. I can send you a leaf or you can make your own and send it!

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The White Food Experiment

Tuesday we took Hana to Stanford for an appointment. I remember when she was still in the CVICU at Stanford and was starting to stabilize and we started hearing about what might happen next. One of the things they mentioned was that some kids stay until in the hospital until they get a heart transplant, they may have to go on ECMO or a Berlin heart. But then there are some kids that get “well enough” to go home on oral medications and some of those kids even do well for years before they need a heart transplant. There are some of those kids that even end up improving. They couldn’t tell us which scenario would be Hana because they don’t yet understand why some kids do well or even improve.

So far, Hana is one of the kids doing well on oral medications. Her echocardiagram, although not worse, is still very severe. On the outside she looks like a normal baby. She is thriving and growing and developing. The term they used was “exceptional compensation” – her heart is very, very sick looking but she appears to be doing very well. There was a pediatric cardiology fellow that joined Hana’s attending doctor for the exam. He, especially, seemed to be very impressed to look at her (after having just reviewed her latest echo).

I feel very fortunate. It’s a reminder on how fortunate we have been.

At Stanford talked a lot about weaning her from the tube and the risk that they are willing or not willing to take with the wean. She is doing well, perhaps because everything is managed so carefully right now. Once the tube is out that becomes harder. They would like her to weigh 10kg before we do anything drastic like pull the tube out and see if her hunger will make her eat. She weighed in at 8.45 kg, so she is still gaining about 7 grams a day. They decided to drop her mid-day Lasix dose because her BUN was so high, but we’ll see how she does and if she starts to retain fluid. We don’t have to take her back to Stanford for three months!

I got the impression that I need to be more patient (when it comes to her feeding progress).

On a daily basis, moment to moment, some things are still a lot of work – mostly on my mind in this category is feeding. Today I made specially prepared baby food in forms and textures that I thought would be more conducive to eating. I took them to our feeding specialist appointment, which we haven’t been going to because the therapist was on vacation. Hana didn’t want to eat the split peas. We mixed them with yogurt and then she ate some, but just a little, maybe a teaspoon. Then we tried some string cheese. Hana ate almost half a stick! It was very encouraging. The final conclusion was that she likes and trusts white food.

I really had my doubts at first – could a baby really prefer foods that are white? But the feeding specialist assured me that it was not crazy to think she only likes white foods. I guess it makes sense, breast milk is white. Yogurt is white. Mashed potatoes are white. All the foods that we have the most luck with are white. So we wrote down a list of white foods. Over the next week I am going to introduce as many white foods as possible to see if that makes a difference. So far we have yogurt, cheese, cottage cheese, vanilla pudding, chicken breast, cauliflower, white asparagus, tofu, rice and white beans.

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New Bloodwork Results

This past week has been about the same. Hana had a cold with a runny nose and she really didn’t want to drink from her Milk Bear. Today she only drank two ounces although she’s been averaging 6-8 ounces. She was definitely more cranky and then I worry it is her heart. Maybe “worry” is the wrong word, perhaps its more like I’m on high alert.

One day last week, she vomited in the middle of the night and her NG tube came out. We decided to leave it out rather than place it again at one o’clock in the morning. The next morning we wanted to give her as much time free of the tube, so Paul went to work and I thought for sure I would be able to find someone to help hold Hana while I put the tube in. Well, it was getting late and I needed to give her medications (via the tube) before too much more time passed. I wasn’t able to find anyone around to help hold Hana. I was getting desperate so, of course, I called my mom.

My mom was able to instruct me on how I could hold Hana so that I could put her NG tube back in by myself. If you have not witnessed NG tube placement on a baby, I can tell you that it is very unpleasant. Hana is squirming, arms flailing, head going from side to side. She is screaming, sputtering, crying, choking and gagging. It’s awful and as the mom or the parent, it feels even worse. I had to take a few moments to take some deep breaths and psych myself up. I decided that if I couldn’t get the tube in, I was going to walk down to Kaiser and ask someone there to help me.

I swaddled Hana’s arms by her sides and then sat in an armless chair with her on my lap. I put one of my legs over hers and then had all the things I needed laid out on her high chair tray. It took a couple of attempts but I got the NG tube in and I managed a pretty nice tape job too. I don’t know if I’ve ever been more proud of myself. It was very empowering. I had thoughts of letting her go tube free more often, for several hours a day because now I could just put the tube back in myself. I don’t know if I want to subject her to that much trauma every day. I wish I knew which was worse – having the tube in constantly or getting a break from the tube but having to endure getting it put back in more often.

Last Friday we had to get bloodwork for our upcoming appointment at Stanford on Tuesday. From what I can tell, the majority of her tests were basically “normal” or at least the same. One test – BUN (blood urea nitrogen) was twice as high as the upper range of normal at 34. I know they talked about maybe having her level be close to 30, but then last time, when it was 15, they seemed satisfied. BUN measure dehydration. They want to keep her dry because it is less load on the heart.

The other test that was different was her BNP which is B type natriuretic protein. I’ve talked about this before. It is basically a substance that is secreted by the ventricles when the heart is in failure. It was going up and up and up since Hana was discharged from Stanford. At the highest it was 1055. Now is is at 589. I think that is great, but we’ll see what the cardiology team at Stanford says. I’m still happy that it is going down instead of up! (By the way, normal levels would be below 100).

Now we just need to get her eating! I’ve been researching a tube weaning approach developed in Austria called NoTube. They have a netcoaching program where they talk with you via web conferencing every day for an hour or so for three weeks. Apparently they have a high success rate. It does cost $4,000! What really turns me off is that they seem like really pushy sales people so I have a level of mistrust. Maybe it is just a cultural thing. I don’t know.

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Her Happiness Breaks My Heart

Hana had a bit of a fussy night and in the morning I found some damp vomit on her bed and pillow. It always hurts my heart a little bit to think that she vomited at night an no one came to comfort her. But maybe she really is ok with it and its just me. This is the third time its happened.

About twenty minutes after she had all her morning meds, all were given a little on the early side, I very quickly pulled out her NG tube. She cried a tiny bit. Then I took her to see Paul and drink her morning milk. Unfortunately, it seems that the first milk of the day comes right back up. At least it is an easy vomit, not like her really bad retching vomit episodes. Unfortunately, she vomited on our bed, which is not protected for baby vomit. She recovered quickly and was back to drinking milk.

All in all, Hana drank 14 ounces of straight breast milk today! That is three more ounces than yesterday! Tomorrow, I will start fortifying it just a little to add calories and hopefully get her used to the taste. We didn’t have a whole lot of luck giving her Lasix, which is the only medication in the middle of the day that really needs to be given at a certain time. I tried letting her taste the Lasix from the syringe and dropping a little bit in her mouth but she was gagging before the syringe even hit her lips! Then she vomited a mouthful and I decided to try another approach. We put the Lasix in some of her milk and she very slowly drank almost all of it. I don’t even know if you can give meds that way, but I figured trying it once wouldn’t be terrible.

The most amazing thing about the day was how happy Hana was most of the day. All babies have fussy periods of the day or a few moments of unhappiness when they don’t like something and Hana certainly had those. But she was noticeably a much happier baby all around. She laughed and smiled more. She was more active and playful. She babbled more. I really think she was so much happier not having the NG tube and not being hooked to the feeding pump. It breaks my heart to think that she could be this happy every day if only she didn’t have that tube. If only…

It broke my heart to have to put the tube back in before bedtime. It is traumatic every time you have to put the tube back in – she cries and screams and gags and almost vomits and squirms. Its terrible. I imagine for nurses that have to do it for babies its not too fun, but to have to do it to your own baby really sucks. On top of all that, it almost felt like I was forcing her back into this unhappy state. I hate it. Afterward, I cried a little.

But, we move on. She saw the feeding specialist again today who still thinks she is improving, although slowly. Her drinking is certainly very promising. Hana is definitely more interested in playing with food, even if she is not putting it in her mouth. She is beginning to mimic us when we eat. It will come. I know the day will come when she is eating and drinking and the only reason we have the tube is for her meds. Now if only I could get her to take her meds orally!

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Fever

My friend Erin has been here the past week. It has really been amazing to have her here. In some ways it feels busier when someone is here staying and helping and that’s because I am trying to do more than I normally would do. But I am very grateful for the support so that I can catch up on other things like paying bills. But more than anything I am grateful for the love.

I always thought Erin would be an elementary school teacher because she is so good with kids. Erin is actually a special ed teacher at a very special school for kids with multiple disabilities. Many of the kids have a private nurse that accompanies them to school, like my mom. It takes a lot of patience and compassion. I learned from watching Erin with Hana, especially when it comes to the challenges of feeding.

Feeding has not been going great. Hana is still liking the Mr. Juice Bear, or “Milk Bear”, as we call it. She is taking about 120 mL a day. Solid foods is not going very well at all, although I am always encouraged when we see the feeding specialist. I am getting negative about the whole thing. I forget the small successes. I think that because we saw improvement one day that will be the baseline to improve upon the next. It doesn’t work that way. Some days are worse. It is two steps forward, one step back and sometimes, two steps back for a while. I am getting desperate.

Adding to my desperation is the vomiting. We went five days without a vomit, that’s the new record. Then, last Sunday she vomited in the evening and her NG tube came shooting out. On Friday night she also pulled out her NG tube in the middle of the night. That’s the worst because you don’t want to put it back in in the middle of the night and her continuous feed leaks all over the bed. The next morning we tried to get her to eat and drink and maybe take some juice or medicines from syringes but it wasn’t happening so we put the tube back in around 10:30 in the morning. I felt defeated!

I’ve been doing some research and I am looking at a new approach, more on that in another post. Before I can begin on that Hana needs to get better. Last night was a terrible fussy night. The feeding pump alarm kept going off every fifteen minutes during her continuous feed. Hana kept waking and rolling out of bed. I ended up just sleeping in her room, next to her bed and finally figuring out why the feeding bag tube kept kinking and setting off the alarm. It was a very bad night for sleep. In the morning, Hana felt warm to me and I discovered she had a fever.

I knew the day would come when she would get sick, have a fever and we would have to see how her heart would handle it. I was on the phone with the Kaiser pediatrician on call and the Stanford pediatric cardiologist on call. Hana was clingy and fussy and tired. I was worried. The Kaiser doctors were worried but deferred to Stanford and made an appointment with our regular pediatrician for Monday. Stanford mentioned having us come in if her fever got worse. It did get worse. I called back. They said to give Tylenol. I gave it and she immediately vomited. So I called again and they had me re-dose it. Then we waited. I imagined having to go back down there and spend the night. I really didn’t want that. Paul held Hana while I made silly noises and faces and she started to laugh and giggle. She napped again. She watched baby signing times. It was 5 pm when I realized that I never changed out of my pajamas. The cardiologist called to check in on Hana and by then her fever had gone down and she was acting fairly normal! Everyone was relieved.

I am writing this late, later than I wanted because Hana woke up and vomited in the middle of me writing this. I checked her temperature again and it is back to a normal temperature, but I’m glad we have an appointment with the pediatrician tomorrow!

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Take Her To Hawaii

Today, Hana is 10-months old! Half her life ago she had already started to show the signs of heart failure, but we didn’t know. Yesterday she went to Stanford for an appointment with her heart failure/transplant cardiologist and nurse practitioner.

Yesterday was a very busy day. I also had a phone appointment with Hana’s dietician, who wants to increase the amount of formula we use to fortify the breast milk. The dietician was also very encouraged to hear how much Hana has been eating and drinking. At Stanford they actually wanted to decrease her volume of fortified milk to entice her to eat and drink by mouth because she is hungrier. The Kaiser dietician and the nurse practitioner at Stanford will talk and get back to me on what the plan is for the coming weeks. If we can double what Hana is taking by mouth then we can start talking about a plan to wean her off of the NG tube! I couldn’t believe we were actually having that discussion. It just seems like it has been such a long, slow, painstaking process that I can hardly believe that the end may be in sight!

The overall conclusion from her visit at Stanford was that we should treat her like a normal baby. They didn’t hear a gallop on this visit, like they did last time, which they believe the increase in her Lasix has helped. As planned, they increased her Enalapril to 2 mL twice a day. Next week, if everything is going fine they will double her Carvedilol to 4 mL twice a day. They think she looks great. They think she is gaining weight beautifully. She weighed in at 8.05 kg. Her blood pressure was 90/60. We talked about traveling. They said to travel, just let them know when we travel out of the area and where. They said to take her on a flight. I asked if they really thought it was okay to go as far away as Hawaii. They said, “Take her to Hawaii!” We may finally get to reschedule our trip! They did say to keep our travels to Oahu because that’s where the pediatric cardiologists are in Hawaii. Someday we will still try to take her to Maui, so we can take her to her namesake, Hana.

But first things first – we need to go back east to see friends and family!

Even before that, we need to get her off the NG tube. To do that we need to get her eating more solids and drinking her milk. Then I need her to start taking her meds from a syringe. It has been really difficult to get her to take foods now that Laura has gone. Today was the most frustrating day yet. I will say that even though she was refusing anything but some yogurt (I tried whipped potatoes and whipped yams with coconut oil) she did drink 175 mL out of Mr. Juice Bear (we call him Milk Bear). It wasn’t 175 mL all at one time, but throughout the course of the day. That is almost six ounces! I am wondering if Hana’s ability to control the amount of milk she gets inspires her, rather than me trying to force foods in her mouth. Tomorrow I am going to try just putting food and a spoon in front of her and see what she does. I’ve tried this before with not much luck, but she seems more interested now.

Next Wednesday it will be time to replace her NG tube. I decided that after her morning meds I’m going to take out the tube and leave it out – at least until after our feeding specialist appointment and see if we can encourage her to eat more when the tube is gone.

It’s felt like a really long week since Laura left. The house is a wreck. Stuff is everywhere. Paul and I have had some late nights getting everything done. The time I spend trying to get Hana to eat is such a huge time drain. I was very grateful for some awesome help today. Tomorrow my friend Erin comes from Pennsylvania! We grew up in the same neighborhood and have been friends since we were two! I hope we can continue to focus on inspiring Hana to eat and drink even more.

After the visit at Stanford I was so happy! I can’t remember the last time I was that happy. I remember being happy when Hana was able to breathe on her own. I was happy when she was moved out of the CVICU at Stanford. I was happy when she was discharged from Stanford. The next milestone is to get the NG tube out. Then the waiting game begins. We wait and we see how Hana does. It could be a very long wait, hopefully, before she starts to show signs that it is time for a heart transplant. In the meantime, I will be daring and continue to hope that her heart heals completely.

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Focused On Feeding

My sister Laura was here this past week. It’s been really good to have the extra help, especially when it comes to feeding. Especially when its Laura. She’s an animal whisperer. At least, that’s what I think. Our dog Poppy came from her and I swear she works magic on animals. I think that includes babies.

After our feeding specialist session last week, in which Laura came with me, we decided to focus her week here on getting Hana to eat and drink more. She got to see how the feeding specialist worked and we just took that home and tried to build on those techniques. So, three times a day we tried to get Hana to eat and drink for 20-40 minutes each session. That’s a lot of time and it requires a lot of patience. It also seems to work better with two people. One person entertains Hana and the other person tries to slip food into her mouth.

We’ve discovered that Hana really doesn’t care for anything sweet. That leaves all prepared baby foods pretty much off the table (literally). I made some whipped potatoes and whipped broccoli. I whipped them with greek yogurt – which is Hana’s favorite food. I also whipped up a very small avocado. We alternated between these foods, mostly choosing potatoes and yogurt. Hana will actually grab the spoon of yogurt and put it in her mouth herself, which is really amazing. The others she’s not so crazy about. The more yogurt it has in it the more she likes it.

After trying to get her to eat we try drinking. I bought something called a Mr. Juice Bear which is used for special needs. It looks exactly like a honey bear container except that it has a straw in the lid. You gently squeeze the bear and liquid comes up the straw. We tried it with the feeding specialist first. Hana was ok putting it in her mouth, which was the amazing first step. Then we squeezed breast milk up the straw into her mouth. She didn’t protest, which was also amazing. Throughout the week of trying this we found we didn’t need to squeeze the bear to much, Hana was sucking it up through the straw herself!

It felt like a breakthrough week! It was not without a lot of time and effort. Still, she is only taking about 10-20mL of food and 10-30mL of milk in each session. That’s still less than a tablespoon of food, more like a teaspoon. The milk is an ounce or less. But I am seeing progress, although it is painstakingly slow! I think once Hana can be off the feeding tube life will become a lot easier!

In other news, Hana is speech delayed, so we are trying to also focus on promoting more babbling and making consonant sounds this week. We’ve been working on sign language. I play the Baby Signing Times DVDs for her when I need to keep her still and upright. She loves them! I don’t know what we would do without them but Paul and I are really sick of the songs, but at least we know the signs too. Hana is waving and clapping and the only sign she has made with the DVD so far is “outside”. It was amazing to watch! I also use an iPhone app for additional signs.

I will say a few words about diaper rash. Almost every diaper is a poopy diaper. Is this too much information? This makes it very hard to prevent diaper rash. I should buy stock in Desitin (is that Johnson & Johnson?). Even with a thick layer of maximum strength Desitin and an equally thick layer of Aquaphor, her diaper rash persists! She cries during diaper changes. We finally got a prescription strength cream from the pediatrician, which I think is making the difference. I change her diaper whenever I think she has pooped or every 1.5 to 2 hours. I am hoping that we can eventually go back to cloth diapers! I wish this kid could catch a break! She has so many discomforts.

Tomorrow we have an appointment with the dietician and then later we have to go to Stanford for a clinic visit. Hopefully everyone will be pleased with her weight gain.

This is how we hook up Hana’s feeding pump (in the hanging black backpack) and keep her upright while it is running.
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Whipped broccoli face!
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