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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Little Things

Things have been going well. Hana still vomits once a day. Today it was in the morning and it wasn’t too much. I guess what makes her vomiting different, perhaps, from other kids that may vomit a lot is the intensity of it. There is usually crying, choking, and a lot of dry heaving. It is not like you look over and say, “Oh, she vomited!” It is usually much more dramatic. Not always, but most of the time.

I feel like things are really starting to come together. This is not without a lot of help and not enough sleep. What makes things busy for us, busier than a family with one baby might otherwise be, are the little things. It is pumping breast milk, washing pumping supplies, washing bottles, rinsing feeding bags, cutting bandages into ovals (and hearts), measuring and mixing formula, washing syringes, ordering meds, picking up meds, drawing up meds, ordering adhesive remover and NG tubes and feeding bags and syringes and adhesives and formula. It’s sending messages to doctors, logging when you fed her and gave meds and when she vomited and tried to eat solids. It’s starting her tube feed at the right time, but not when she is rolling around or when its time to nap. Its talking to the case manager about supplies and samples and breast pumps and prescriptions and what messages have come from Stanford and what echocardiagrams I need to take to them next time I am there and how much Hana weighs this week and how many times she vomited and when.  It is a lot moving parts. Not too many of them can slide, either. They all have to get done and by a certain time and not too early either!

This is why all the help has been fabulous, because keeping up with all the new stuff leaves little time for normal things like grocery shopping and making dinner and cleaning and paying bills and doing finances and taxes and laundry. But each day it gets better, mostly. Today was a good, low-key day. We took Poppy on two good walks and spent the rest of the day getting naps (Hana, not me) and attempting solid foods and bottles and giving tube feeds while she was upright and awake but still getting time to practice crawling on the floor. Tomorrow we go back to the GI doctor. I have a long list (in my head) of things to go over, like choices of medications, and weight gain and types and sizes of tubes and formula, volumes and rates of feeds and how much to fortify and when I should stop pumping breastmilk. There are more questions, I hope I can gather them all together before I forget!

Here are some photos from the last couple of days.

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CT Scan

So, we were kind of hoping that the CT scan would show something wrong with Hana’s coronary arteries because that is easy to fix (relative to a heart transplant). We knew the likelihood of all this being a coronary problem was very slim. As it turns out her coronary arteries are just fine, that is no longer a hope.

With all the unknowns, my dad keeps asking, “What should I be rooting for?” There’s a very slim, outlying chance that, given enough rest, her heart could recover. Or it could recover enough where she wouldn’t need a transplant for years. The mortality rate for transplant patients increases the older they get, so delaying it seems best. But, because she is so young, if she got the transplant now they believe that there is less chance of her body rejecting the heart, therefore making now more ideal. They don’t have enough data on transplants in infants to be able to say with certainty if now is for sure the best situation. So, it’s hard to know what to root for.

Here is Hana about three weeks ago:

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Presidents Day Plan

Today started positive despite the arrhythmia Hana was having in the night. It was the best I’ve seen her since arriving at the hospital. She was playing with toys and alert. When she was sleeping she looked like the baby I know at home!

Today they took out her breathing tube and I heard her little voice for the first time in a long time. Unfortunately, despite doing beautifully on the CPAP, she had to have the breathing tube put back in. She was really struggling to breathe and she was trying to cry. Putting the breathing tube back in was really scary. Her heart rate was crazy. Her throat was so swollen they had a difficult time getting the tube back in. I cried and kept visualizing her safe and cuddled in my arms. They don’t think the swelling has to do with her heart. They’ve started her on a steroid to help with the swelling and will try taking the breathing tube out again in a couple of days.

We got to see Poppy too. We have amazing friends too! I can’t say thank you enough.

This morning:

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Breathing tube out:

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Me and Paul reading her a story last night:

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Hana and I dressed to practice “swimming” in the bathtub about a month ago:

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Sometimes I look over at Paul and I think, “How is it that this is happening to us? How is this possible?”