Hana's Heart

They decided to discharge Hana tomorrow. We are so excited (I wish it were today, but I don’t need to be in a hurry!). It will be great to be in a more comfortable place where we can all get more sleep.

Today she will get most of her six-month immunizations. Tomorrow, right before we are discharged they will give Hana two live vaccines that are not typically given to six-month olds. One is MMR (measles, mumps, rubella) which is usually given after a child is over a year old. If Hana gets a heart transplant, she will not be able to be given this vaccine, so they are trying to get her at least some protection by giving it early. The other live vaccine she will be given is Synagis which protects against respiratory syncytial virus (RSV). This vaccine is only given in special cases, such as children with congenital heart problems. They have to feel very confident about Hana’s condition before giving live vaccines because she can not get a heart transplant for one month after getting a live vaccine. One vaccine she is not getting is rotavirus because it can not be given with the MMR vaccine. They will wait a month and see how Hana is doing before assessing whether they can then give this live vaccine.

Hana has been making progress taking a bottle. Sometimes she is too sleepy to drink, but I’m hoping once we are home and she is able to get more sleep, it will be easier. Otherwise, I will give her feedings (and medications) through her NG tube. Yesterday I got to put in the NG tube (into her nose and down her throat, into her stomach) and, as long as someone can hold her, it was easy!

It’s been a busy day. Hana didn’t sleep well last night, so I didn’t sleep well. Actually, I barely slept! Then rounds came and we were the first patient they saw (I was still getting dressed for the day). Today, they decreased her Ativan again and took her off of Sodium. They increased the amount of calories fortifying her breastmilk. They decided to do bottle feeds of 120mL every three hours. If she doesn’t take it all then she gets the rest through her NG tube. I am allowed to try breastfeeding twice a day. They are going to try to fast track her immunizations since people who get organ transplants can not get immunizations for certain things. In the end, they said she could go home in the next 24 to 48 hours! I can hardly believe it!

After rounds, Hana had a chest x-Ray. Then they took her PICC line out. Then they did another echocardiogram. They’ve been teaching me how to administer her medications, how to put her NG tube in (only in a mannequin so far) how to fortify the breastmilk she gets. I had to get medical releases signed for various things. The social worker came by and the parent mentor. It’s been so busy!

I’m trying to wrap my mind around the fact that we are going home soon!!!!

Hana slept well and seems bored. I would be bored too. I think I’m getting used to all the noises in this hospital room because I seem to be sleeping better. I do wish Hana would sleep later than 5am! This weekend involved a lot of nice breaks for me. I snuck back home for the first time since leaving to go back to the pediatrician’s office. I got to see Poppy, which was great! It did feel weird walking down the street without Hana, I felt so empty handed. Paul took several long shifts with Hana – they are quite a pair!

Today they are weaning a little more of her Ativan. They are decreasing her sodium. They are beginning the transition from continuous feeds to a more “regular” feeding schedule. We will be allowed to offer her even more ounces by bottle later today. Her fluid intake will have to be watched very, very carefully. Tomorrow they will do another echocardiogram and chest x-Ray. I am glad of this because she has developed a small cough and it was a cough that brought us to the doctor in the first place. They will also take her PICC line out after tomorrow morning’s blood draw.

I need to make Hana’s six-month well baby appointment! I canceled the one she had because I thought we would still be in the hospital! It seems strange to think of taking her for a “well-baby” check up after all of this. The doctor’s here really want her to get her vaccinations as soon as possible and accelerate it when possible (a heart transplant would not allow her to get certain vaccines).

Thank you again for all your help, support and well wishes! We might get Hana out of the hospital this week!

I was in the hospital cafeteria the other day when I ran into one of the fellows from the CVICU. She asked how our first day was in 3 West. After chatting a bit, she remarked how surprising it was to everyone on how quickly and how well Hana has gotten. It’s amazing the progress she has made from being life flighted here at Stanford, expecting to use emergency, life saving external pumps, to being moved upstairs to the intermediate unit in just two weeks. Hearing that some of the medical team is surprised gives me hope. It gives me relief. It IS amazing, but it is NOT the most amazing thing that has happened.

The most amazing thing that has happened is All Of You. All of you that are reading this blog, all of you spreading the word, all of you that have prayed, meditated, kept Hana in your thoughts, all of you that have sent cards, gifts, money, donated, raised funds, brought food, sat with us, took care of our personal affairs, all of you who have commented on the blog, sent texts, emails and voice messages. There are so many people who are rooting for Hana to get better, some of you we know very well and some of you we’ve never met or even heard of. There are people from all over the world who are following Hana’s updates – which is so opposite of Paul’s and my original inclination to give her a childhood of relative anonymity, free from Facebook posts! Yet, the width and depth of Hana’s support network has been awe inspiring and we would not be where we are today without it.

It has been the most amazing thing. It gives me hope. It gives me relief. It has soothed my aching heart and comforted my soul. I feel less alone, like all of you are helping to shoulder the enormity of it all. Here is a quote from Mother Teresa, There’s nothing more calming in difficult moments that knowing there’s some one fighting with you.”

We are so incredibly grateful.

Today Hana seems even better than yesterday! There will be no real changes except making another small decrease in her Ativan. Today I started learning how to give her medication through her feeding tube. My mom stayed with Hana in the hospital last night, so Paul and I could have an evening alone. We stayed in the cottage and I got my first full night’s sleep since July!

In order to get a minor cough checked out, Hana was taken to Kaiser on Wednesday February 11. By the end of that evening she was in the intensive care unit of UCSF’s new children’s hospital and after a long and sleepless session that takes the form of a blurred collage of pediatricians, intensivists, registered nurses, medical devices, opinions, sunrises, sunsets, and a helicopter ride to Stanford children’s heart transplant center, we were surrounded by top pediatricians and cardiologists.

Hana was in the intensive care unit and she had every medication needed to keep her heart pumping; plus an ECMO machine that would pump and oxygenate her blood if needed. We stayed with her until Kathleen and I finally lied down and got some sleep in a small room in the ICU. The dust from the chaos finally seemed to start to settle.

We spent the whole next day with her, listening to doctors and nurses, taking notes, surrounding her with toys, and reading some familiar books to her. Her eyes were always either half closed with fatigue or open and wondering… but one time, they looked afraid, as if to ask: mom! dad! why is this happening?

In the midst of feeling helpless to do anything but give her comfort and encouragement, I realized what day it was, Valentines Day. I am here on my daughter’s first Valentine’s day! Her heart is in already hurting, so the thought of breaking her heart is inconceivable. She’s too young to know it’s Valentine’s Day, she won’t remember, etc.. these thoughts were all trivial.

I remember reading years ago in a Chinese Taoist book that different organs like different colors. For example white is a good color for the lungs, the liver likes green, and the heart like red. So Red is good for the heart, Hana’s heart is in trouble, and its Valentines Day? Of course I need to go and get a Valentine for Hana!

When I had a chance, I walked over to Stanford mall and looked everywhere for some kind of valentine. She can’t eat chocolate and she usually pull flowers apart, so after searching for a while I envisioned what I wanted: a small red heart-shaped pillow-like thing that I could hang above her in bed.

I looked around and found some fancy big designer pillows, a Clifford the big red dog, and a stuffed valentine skunk who had a heart hanging from his tail and sang while shaking it. During the search though 20 stores, I had picked up some red felt hearts, some heart streamers, and a baby valentine book; but no heart.

Finally, I walked into a store on the outskirts of town and in one aisle noticed a stuffed dog with a stuffed red heart on his collar. The look on his face wasn’t one of pity, like a little puppy who needs rescued by a kiddo but more one of generosity, like a St Bernard who has just rescued you from an avalanche. And looking closer I noted that his heart could be removed from his collar and no one would know the difference; he would still look just as happy without his flair.

I bought the heart of course but removed the dog and gave him back to the cashier. I took the heart back to Hana – along with her Valentine book and heart decorations – and hung the heart up above her in bed.

Happy Valentines Day, lil Hana… you’ll always have my heart!

ps: Here’s Hana with the little red heart above her, it says Amor (love) on one side.

Hana is much like her normal self today. She still may be overtired from lack of sleep (two babies in our room cried most of the night) but she seems to have an easier time sleeping through the noise than me. I do think she is really bored with this hospital bed.
Today’s plan is to supplement sodium because it is still low. The attending doctor yesterday was opposed to this so now it makes me nervous that today’s attending doctor wants to start it. They are decreasing her Ativan by 10%. They are starting her on a beta blocker, carvedilol. They are keeping everything else the same as yesterday. She did have a high heart rate/arrhythmia but since it went way down when she is resting, they don’t seem terribly concerned. She didn’t really gain any weight yesterday and we need her to gain it, she’s lost about a pound since all this started (she only weighed 15 pounds). She also needs to prove she can gain weight before being discharged. Yesterday the occupational therapist came by and she made sure Hana could take a bottle and swallow safely. So, today we will again give her a 1oz bottle (yes, she took the bottle, no problem!). They drew blood for genetic testing, we won’t have results for two months.

We got a cottage yesterday here in Palo Alto. That will help Paul do work remotely and avoid trips all the way into the city. It’s a beautiful space, we are very lucky! I started opening more care packages and cards and started crying – a lot, so I had to stop. More on this later…

3 West is the pediatric cardiology unit on the regular hospital floor. We are in a room that contains four patients – and they are all babies. That’s right, four sick babies all trying to rest and heal. It doesn’t work. The nice thing is you can sleep (actually, you are expected to be with them) in the room. I actually think I got more sleep the night we were life flighted here. Or, I could say, I don’t think I got more than 15 minutes of sleep at a time. It’s worse than bringing home a newborn from the hospital. There was always one baby crying, or an alarm going off or staff talking loudly in the room or noise in the hallway (because someone left the door open), or someone snoring. One patient clapped incessantly. That same patient was moved out of the room in the middle of the night. Then housekeeping came in to cleanup and bring in a new hospital bed.

Hana did not sleep well although she thankfully slept better than me. It was nice to have her so close. I really miss our ICU nurses who took such good care of her. They do extraordinary work. I’m not saying that the nurses up here aren’t good, I like Jeffrey, our day nurse, but our night nurse wanted to weigh Hana at 4:30 in the morning. I asked her to wait until at least 6:30. I thought people would be more concerned about patients getting rest, maybe by lowering their voices a bit when a baby on the other side of the curtain is trying to sleep, but a good number of people seem completely unaware. I’m going to wait another day before I say something, maybe our first day here was an anomaly. The other thing I’m not used to are nursing assistants and residents. There were only fellows in the CVICU, no residents. I think having the CNA’s are good because they will hold or console babies when no parents are around.

Hana is the same as yesterday. The only changes they are making are to decrease her Ativan and decrease her volume if breastmilk but increase the calories by fortifying it. She’s been kind of cranky, probably because she is overtired. I know I am! One of the heart failure/transplant doctors said, best case scenario, she could be discharged as early as next Friday! It will still be many months before we know what course all of this will take, but for now she has been declined for the transplant list. (That’s a good thing!)

It’s been a very hectic day. Hana woke up pretty happy and squirmy and ready to bust out of the ICU. She got her arterial line out of her right arm, so now she can grab things again with her right hand. Then they moved us upstairs to the step down unit at 3 West! We moved all of her accumulated stuff (toys, blankets, pictures, books) and we also moved all of our stuff out of the sleep room. They had to do the handoff from ICU to the step down unit. Then I had to run across the street to meet with housing because they are trying to get us in a guest cottage here in Palo Alto.

I will try to update more later.

It was two weeks ago today that all of this started. I haven’t been home since going back to the pediatrician’s office. If you had gone to my house you would have walked into the middle of my day, my “life”. All of it interrupted so suddenly. It’s amazing the things you can let go of, and quickly too, when you really need to. So, why can’t we be more like that more of the time? But I had collected a clutter of grudges, worries, obsessions, concerns, material things. Some of these things are just on hold until this time in my life passes, but some of them are better left forgotten.

Hana is having a great day. She no longer has the nasal cannula. She’s off the Milrinone and dopamine. They might take her arterial line out today. She could, in theory, go onto the hospital floor, but they still want to get her Enalapril dose up without her blood pressure dropping so much. They are talking about moving her tomorrow! She is kicking and trying to sit up. She’s being stubborn about naps. She is about the same as two weeks ago except that she no longer has a cough (well, she is also getting all her meds and food through her feeding tube)! One thing that hasn’t changed is her heart. They did an echocardiogram yesterday and it showed no change from two weeks ago. Her heart is still enlarged. That’s good in that she is not getting worse, but it would be nice to see improvement, of course.

They lifted the isolation restrictions around lunchtime so we no longer have to wear gowns, gloves and masks!

Today we were supposed to return from our trip to Hawaii. We were scheduled to leave on Friday the 13th. Today they are continuing the Enalapril (the drug I couldn’t remember from yesterday) twice a day. She seems to handling it better than yesterday. They are decreasing her Milrinone and weaning more her nasal cannula. She is still getting Ativan for her agitation. They stopped the Heparin and started aspirin and iron. She is still getting Lasix and Aldactone. The goal is still to get her on oral medications. They even talked about moving her to the regular hospital floor as early as the end of the week.
It feels positive. Do I dare get my hopes up for a full recovery? Is this going to end up no big deal? Did I sound the alarm too soon? I know the answer is “NO!” But part of me doubts. “Never cry wolf!” has been a secret life motto for me, even when there is a wolf. I try to take on the wolf alone, it often doesn’t occur to me to ask for help, but sometimes it is also my pride, because I think I am stronger if I can do it by myself. Maybe that is true sometimes. One thing all of this has taught me is that there can be strength in numbers too. All of you – the people reading this, texting, calling, emailing, thinking, praying, meditating, has given me strength. It has given us all strength. The course of all of this is still unknown and, more relevant, the state of things almost two weeks ago was very, very bad. That was the wolf. What is his fate?
Here is Hana playing today: