feeding tube – Hana's Heart

Good Vibes

Posted on September 26, 2015September 26, 2015 by kathleenyago

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!

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!

The White Food Experiment

Posted on August 7, 2015August 7, 2015 by kathleenyago

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.

Her Happiness Breaks My Heart

Posted on July 15, 2015July 15, 2015 by kathleenyago

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!

Take Her To Hawaii

Posted on June 19, 2015June 19, 2015 by kathleenyago

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.