Month: March 2015

The nights are still rather hard – I had to get up almost every hour for something. Maybe it was just to soothe a crying baby, change a diaper, or maybe it was to clean and fill the feeding bag, to turn off the feeding pump, or to administer medications. The day was still full of unpacking and getting organized, setting up tube feedings, dosing out and administering medications, fortifying milk and pumping. I think once I get into a routine it will be easier.

Hana had a pretty good day. She had a lot of smiles! We got our dog Poppy back this afternoon and we were able to walk her to the park. Hana has always loved being outside and I could tell she was enjoying being at the park. The big downer was that she vomited a lot again this evening. She got Paul pretty good. I had to call the on-call doctor at Stanford again. I think this time it may just be that her feeds were just too much volume. She was back to being her normal self within minutes, unlike the night before, so I wasn’t too worried. But I was still somewhat worried. I did, I do want to cry and maybe when there is a little more time I’ll let myself do that. I am wondering if the day will ever come that I can breathe a sigh of relief.

But, it was a good day. When I had Hana in the baby carrier or when I was
holding her I kept thinking how amazing it was to just hold her and enjoy her company. It is so amazing. It’s a good day when you get to hold your baby. Today was definitely a good day!

I wish I could say that being home has been nothing but wonderful. Tonight we hit a big bump. It is really great to be home. It is a lot of work too. Imagine suddenly having to go away for three weeks and coming back with a newborn baby you didn’t plan for. There is lots of unpacking, organizing, preparing milk and medical equipment, measuring out medications, timing medications and feeds, lots of cleaning and still looking after a baby who needs care around the clock.

The big bump we hit tonight was when Hana started vomiting – a lot. She was choking and gagging and vomiting. It was very scary. It happened after her evening medications and I suspect one of them is upsetting her stomach. The carvedilol was made at a much lower concentration so she needs to get a lot more liquid for the same dose. I think the extra volume may be too much. I hated having to call the on-call pediatric cardiologist at Stanford so soon after leaving. The nurse practitioner called me too. They were very clear that there is no matter too small, in order for us to call them. My mom decided to change her flight and stay another week. Tonight’s plan is to watch Hana and slow down her NG tube feedings. I started to cry again. I just feel so scared. At least at the hospital she was hooked up where they monitored her heart rate and breathing – you didn’t have to worry because an alarm would go off!

I’m hoping for a restful night for Hana.

We just got home! It was a hectic day, especially trying to get all the medications from Kaiser that we need at home. Discharge from the hospital wasn’t too bad and Hana’s medical team looked very happy! It was almost like bringing home a newborn baby from the hospital again, only this time it’s all new in a different way!

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.