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

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.




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!







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.



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.

Whipped broccoli face!



Paul and I have been away for four days and three nights. My parents came from Pennsylvania to visit with Hana and to watch her while we went out of town. My mom is a pediatric nurse, so I knew everything regarding Hana’s medical needs would be taken care of (for example, she would be able to put her NG tube back in!).

I’ve still been experiencing problems getting Hana’s medications. The problems are stupid. I follow the instructions to give them notice to have the prescriptions ready, I check on them, I go to the counter, I talk to someone and still the prescriptions are not filled or filled properly. I finally talked to the pharmacy manager and he gave me the backline phone number. He said to ask for him or, if he is not there, to ask for the pharmacy manager to directly ask for the refills. He said this would make it easier for everyone. I am very glad. I did still receive a prescription that was not mixed at all, it was solution and powder. It is supposed to be mixed by a pharmacist. I am very lucky that my friend and neighbor Alyx is a pharmacist and she came over in her pajamas and mixed the medication so I could give it to Hana that night. We are very lucky!

We’ve been having problem with Hana’s feeding pump – today we got a replacement one. They tried to deliver the wrong pump yesterday, but now that is straightened out. I think the theme here is that things don’t go the way they should and I just need to get used to that. I have this expectation that people will be competent and perhaps they are the majority or the time, but 49% wrong is still a lot.

In very good news, Hana is looking and acting like a normal nine-month old. My parents had a great time with her and said you would never know she had a heart problem. That makes me feel better. I see her so much that I wonder if I can really know. She took to them very well and seemed very happy even when we were gone.

This week we are going to see the feeding specialist. We are also going to start Hana on prilosec since she seems to be experiencing a lot of discomfort, regurgitation and reflux at night during her continuous feed.