Hana's Heart

Losing Weight?

Posted on September 2, 2015September 2, 2015 by katmeander

There has been a lot going on and much of it I wish I had made time to give it the recognition that I think it deserves, but its has just been too crazy. First, we had Hana’s big birthday celebration and it was wonderful! We had amazing food, amazing decorations (more on this later…) and amazing guests! Second, Hana and I flew to Bend, Oregon for our first trip after being discharged from Stanford. We were very nervous to have Hana fly and for her to be so far away from our usual medical facilities in case something went wrong. She handled the airplane ride just fine. There were no complications other than the usual difficulties of traveling with a one-year old – she didn’t sleep very well, naps and bedtime were harder, she might have felt overwhelmed by the new environment. She did vomit more – at least every day, which brings me to the next point.

We saw Hana’s Kaiser cardiologist on Monday and she has lost weight (130 grams or 4.5 ounces) from the week before. Now, when she saw her pediatrician the week before she was weighed on a different type of scale (a real scale versus a digital scale) and the nurse did it very, very quickly, maybe not so accurately because she is not used to parents who are tracking every ounce (or gram) so carefully. But lets say the reading was way off, still, her weight is just barely more than her weight at Stanford three and half weeks ago, its really the same. Her Kaiser cardiologist said she does not get worked up over one “bad” data point, such as this drop in weight.

In addition, Hana had an echocardiagram by the usual tech at Kaiser, Doug, who also did Hana’s very first echo, while her cardiologist looked and watched and we saw how bad her heart was for the first time. On Monday, Hana was Doug’s very last patient of his career. After 30 years he was retiring, so that was kind of an honor for us (and sad because he is really, really amazing). Regarding her echo, her Kaiser cardiologist said, “there isn’t anything significant” to talk about, but her heart is larger than it has been, so that is a change. She did say, “sometimes that happens”. This made my own heart plummet. I will say that her Kaiser cardiologist has seemed much more worried or concerned than the heart failure/transplant cardiologists at Stanford and she did not seem worried or concerned, but still, I was hoping her heart was getting smaller not larger.

Lastly, during her exam, her cardiologist thought she saw “pulling” of her skin between her ribs, as if she were having to work hard to breathe. She also said this could be because she had just been upset the minute before. But still! That is three things! I walked home from the appointments in a teary daze. Everything feels so fragile. I tell myself to take a deep breath, she looks so good, she is acting so much happier, she is talking so much more! Maybe her stagnant weight is because she is moving around so much more! I hope so. But still, it has been a little bit stressful and I am reminding myself to not take for granted the days and moments and all the good things. I remind myself not to make it something it isn’t. I remind myself to imagine what life will be like when all these things are no longer a worry. I remind myself to cherish my sweet girl!

1-Year Old!

Posted on August 20, 2015 by katmeander

Yesterday, Hana turned one! It’s amazing and wonderful and unbelievable. We feel so lucky and grateful to have Hana with us, happy and relatively healthy. On her birthday we gave her a white cupcake, which she smashed up with her hands and maybe a tiny bit of frosting ended up in her mouth. She thought it was great fun! But to really celebrate, we are having a big party on Saturday for local friends, family, neighbors and people who have showed their tremendous support in the last year. I haven’t been able to contact, locate or even figure out who some of the people are that helped us, but we are deeply appreciative. To all of you who don’t live in the area, we wish you could join us!

Hana has been doing great. She is babbling more, including some new sounds. She is nibbling on foods much more, still not enough to be significant for nutrition, but she is definitely more interested. She went an entire week without vomiting! This is a new record. She is getting really busy crawling around and climbing on things. She usually has a good day if it involves going to the playground where she likes to crawl to the top of the play apparatus (what do you call those things?).

She hasn’t been drinking quite as much by mouth. I was really stressed about it for a couple of weeks and then I finally decided that I really, really have to stop stressing about weaning her from the NG tube – or at least I have to tone down my fixation on it. The feeding specialist doesn’t feel like she is quite ready to wean from the tube but does feel like she is on the right track and making nice progress. So, I offer the Milk Bear to see what she will drink and when an hour goes by if she hasn’t finished it I pour it into the feeding pump and get that going. It does suck to have to tether her to the feeding pump.

Whenever I feel like something sucks I remind myself to have a good attitude. I have learned many valuable lessons through all of this, but the one I’m focused on now is how much better things are when you have a good attitude. People are nicer and more helpful. I don’t waste my energy and time being upset about something. I’m sure its better for Hana too. Besides all that, the experience of life is so much richer when we choose a better attitude.

I am reminded by how much love and support we have gotten through all of this and it is so much easier to have a positive attitude! We are so grateful. We are so thankful. We couldn’t have done it without you!

Look at this baby girl!

The White Food Experiment

Posted on August 7, 2015August 7, 2015 by katmeander

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.

New Bloodwork Results

Posted on August 3, 2015 by katmeander

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.

It’s Not About Hard Work

Posted on July 27, 2015July 27, 2015 by katmeander

I wish I could say that Hana was continuing to drink 14 ounces of milk a day, but she has begun to refuse her Milk Bear and the most we seem to get her to drink is, on average, about 7-8 ounces per day. Still, that means that we don’t have to use the feeding pump until almost 4pm each day and that is a HUGE quality of life improvement for everyone.

With more freedom from the feeding pump, Hana has been able to do more crawling and standing practice. I love watching her move! It is so much better than keeping her in the walker! She is so much happier too. She is sleeping much better at night, which means I sleep better too. It is harder in that I have to give her Priolosec and then and hour later start her last feed and an hour later turn off her last feed, so I often don’t get to really sleep until 2am. But I nap in between, or fall asleep pumping…

I have been doing a lot of research and reading about these kids with feeding tubes and how people have weaned them off of their tubes. What I’ve learned is that it is:

1. It’s often the hardest thing a parent has had to do (other than having to see their child in the ICU, I suppose).
2. It is often a very long and slow process requiring a lot of patience. It is best to let the child lead you, instead of the other way around. It’s on their terms, not yours.
4. It is counterproductive to try to “force feed”.
5. It works better when you completely let go of expectations and do not put any pressure whatsoever on the child.
6. It works better to have peers “show”/demonstrate eating.
7. It works better to have a family mealtime ritual.

So, I can set up the baby Play Picnics at my house and have babies come over to eat and make messy play. Paul and I can sit at the table regularly and “eat” meals. These things do work, although very, very slowly. BUT, the part that is killing me is the letting go of expectations and pressure. I’m used to living life where hard work and sacrifice will get you a lot of things. But now, that is just not the case. What I need to do is to completely let go and trust that Hana will eat when she is ready and that no amount of effort or hard work on my part is going to make a difference, well, if will, it will just make it worse!

Her Happiness Breaks My Heart

Posted on July 15, 2015July 15, 2015 by katmeander

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!

More Milk!

Posted on July 14, 2015 by katmeander

A few weeks ago the dietician at Kaiser wanted to change Hana’s feeding plan. This has caused a professional “conflict” between Kaiser and Stanford. At Stanford, they want to really move us towards getting Hana’s NG tube out and they try to accomplish this by reducing the number of calories that she gets in hopes that she will feel hungry and start to eat. At Kaiser or perhaps more with the dietician than anyone, they want to make sure Hana is getting adequate nutrition during this important period of her development. Of course, they would also like to see the NG tube go at some point but they would go about getting rid of it by reducing the volume of liquid she gets, while increasing the fortification of the breast milk she gets.

My default is to do what Stanford says to do. So, since the dietician was not returning the calls of the nurse practitioner at Stanford that very, very closely follows Hana’s care, I defaulted to what the nurse practitioner said and did not make the changes the dietician wanted. Let me wrap up this long back and forth story to say that, in the end, we are keeping Hana’s volume of milk at 800 mL and increasing the fortification to 30 kcal/oz. BUT, I am offering her straight breast milk first by mouth and whatever she does not drink I fortify and then run that through the feeding tube. Eventually, Hana will have to drink the fortified milk or start eating food! In addition, she is getting five feeds a day. A smaller 80 mL feed in the morning and then five 130 mL feeds that run over and hour and spread three hours apart. Three of those tend to be while she is sleeping – one while she is taking a nap and two after she has gone to bed. The best thing about these changes is that she getting fed a lot less at night. No more overnight continuous feeds and no more around the clock 3am or 6am feeds. I do have to do a midnight to 1am feed, but that’s manageable. Hana sleeps much better too!

I started this “experiment” kind of own my own on Monday. I got the “blessing” to do it after the fact. I figured one or two days was not going to harm Hana. On Monday Hana drank 9.6 ounces over the course of the day. The most she has drank before that was less than 5 ounces! Today, Hana drank 11 ounces! Overall she gets 26.6 ounces a day, so she’s not quite at half yet. She has drank all of it through her “Milk Bear”.

In the meantime, I am really trying to get her to become more interested in solid foods! We’ve sat and watched a couple of babies eat in the last few days and it has not really enticed her to eat more than a very small amount on a spoon. I’m working on setting up food play as much as possible during the day. Today I set up a sheet in one room with the inflatable kiddie pool and all kinds of food. I’ve bought some new tools too and I’ve stopped really trying to feed her. Instead I encourage her to try eating herself. I think she really took to drinking from the Milk Bear because she could control it herself, maybe it will be the same with foods.

Tomorrow we are going to take her NG tube out in the morning after her morning meds. Now we know she can go a good amount of the days drinking the milk she needs so it doesn’t seem as risky to take out the tube. There is only one medication that she absolutely needs to get in the afternoon that will be tricky to give without the tube. I gave Hana Tylenol for teething several times before she was ever in the hospital, but now her gag reflex is so strong, I hope she doesn’t vomit. Who knows? Maybe it will go great and she will drink so much milk and take all her meds by mouth that we won’t need to put the tube back in? That would be a small miracle!

Baby Lunch Date

Posted on July 7, 2015 by katmeander

Hana seems to be recovering from her UTI just fine. That being said, her weight gain has been off. First she gained 12 ounces in ten days. Then she lost 5 ounces in the week she was sick. Overall everyone is very happy with her weight gain and would like to reduce the volume of her fortified breast milk to see if she gets hungrier and starts to eat more. Of course the weight thing always makes me worry. On top of that, she seems to be vomiting more, but I kind of think that the antibiotic she is getting is upsetting her stomach.

Hana’s feeding of solid foods has been very stagnant lately. She is still drinking well out of her Milk Bear, but, in my mind, the solid foods are getting worse. Having Christine here last week helped a lot in that department. She helped me set up an inflatable baby pool that we put Hana in with a whole bunch of food to let her slide around and get messy with edibles (of course, there was no water in the pool!). It worked ok, but mostly Hana wanted to climb over the edge. The foods she did touch did not go anywhere near her mouth. I’ll keep trying this method, because I want her to learn that foods are fun.

The best luck we have with feeding solids is when Hana gets to watch a real, live baby eat right in front of her. She had the opportunity a couple of times in the last week. She easily ate more than any other time and without much of a struggle. Hana eating a lot would probably be another baby licking the food off their own face, but we are starting slow! Since we have had so much success with the Baby Lunch Dates I would love to get together with as many solid-food eating babies as possible. I will come to you. Please, if you are interested let me know! It doesn’t have to be a big time commitment either. We will come and then probably twenty minutes later we will go!

UTI

Posted on June 30, 2015June 30, 2015 by katmeander

Last night, while I was trying to finish things up so I could go to bed, Hana awoke a bit so I took the opportunity to take her temperature and it was 103. That made me nervous, so I ended up on the phone with Stanford again with the same on-call pediatric cardiologist as the night before. She felt much better knowing that Hana had seen her regular pediatrician and pediatric cardiologist that day and advised to just sit tight, keep giving Tylenol and not to worry unless her breathing became labored or too rapid or her temperature reached 104. Luckily none of those things happened but I was too nervous to sleep so I ended up lying down next to Hana and checking her breathing and temperature. When it went down to 101 I felt better and finally slept (but still next to her bed).

She awoke cranky, but was otherwise fine. We got to pick up my sister Christine from the airport today, which is a relief with all the sickness going on. It’s nice to have an extra pair of hands. Soon after we arrived back at the house, the pediatrician called to inform me that her culture had come back and she has a urinary tract infection. I was relieved to know what was causing the fever. I also feel really bad that my possible neglect in diaper duty may have been the cause, although Hana does have a LOT of poopy diapers every day, its kind of hard. I feel terrible that she has been in such pain over the last few days too! But now we know. Know we have an antibiotic that we’ve started giving her. Now I can sleep better, especially since her fever did not spike much today at all.

Now we can get back to the business of Hana’s eating…

More Fever

Posted on June 29, 2015June 29, 2015 by katmeander

I’m sitting in a exam room with the lights off, hoping Hana will sleep. We are waiting to get the call for catheterization to get a urine sample. We’ve seen the pediatrician who sent us for a chest x-Ray. Then we came back and Hana’s pediatric cardiologist came down to examine her as well. She called Stanford and talked to one of the heart failure/transplant cardiologists. They feel that there is no reason her heart can not handle a virus/fever. That being said, if anything changes we need to take her to Stanford.

They would like to keep her at home, to keep her away from hospital germs, but everyone is always on the fence about whether to bring her in or not. The Stanford pediatric cardiology fellow on call yesterday and last night called me this morning to see how she was doing. I talked to her five times yesterday, one time was at 4:45 this morning, when Hana’s fever was 102.6. She said if her fever got any higher then we needed to bring her in. Luckily it didn’t!

Now we are waiting and watching, hopefully for nothing more than any other baby who is sick.