A Surprise For Hana

At the end of the IVIG post, I mentioned I had something exciting and special to share to Hana. I’ll tell you about that here, but first, I’ll give you an update on how she is doing.

Hana’s fever broke and things got much better. She was still kind out of it the next day, but she also didn’t really get to sleep until 1am the night (morning) before. She mostly acted like she was sick and not feeling well. After her afternoon nap she was back to her usual self! They continued the IV antibiotics and one antibiotic, Vancomycin, requires a blood test before the fourth dose to make sure it isn’t taxing the kidneys too much. I knew earlier in the week they were a bit concerned about her kidneys already because of a high creatinine level.

So, this required another blood drawl which was totally botched. A flex nurse came to do a heel stick and was not able to catch the blood in her tube for collection. They tried to get someone from Vascular Access, but they all seemed to be gone for the day. Then they tried to call the lab to get someone but by then it was 8:30 and the blood was supposed to be drawn at 7:30 and the fellow that was on that night said that we missed the window to get the blood draw and the results would not be accurate. Instead she was going to give the Vancomycin dose anyway and then do the blood test before the fifth dose. Unfortunately that would mean a blood draw at 4am.

I was not happy about it but I was worried about Hana’s kidneys. The nurse tried to press the fellow to wait until morning but she said no. Hana has done fine on Vancomycin before. So, at 4am the phlebotomist came and woke Hana up and drew blood. He actually got it right away so that part was fine but Hana was still crying and lightly screaming and then did not go back to sleep until 7am. I was so tired! I felt terrible that Hana had to put up with all that. Then, the results came back with an utterly ridiculous value of 62 (I think they were looking for something to be 4-6, whatever that means, I don’t know). The team, when rounding in the morning, were appalled at the whole story.

I wish I had known better, but I didn’t know enough to push back. In the end they decided to stop the antibiotics all together.

On to the surprise for Hana. I want to start off by saying we have received many, many wonderful, generous and heartfelt surprises, including ones from strangers. For example, the husband of a friend from college stopped by on Saturday with milk (my request!) and some really awesome toys for Hana which she loved! Or the amazing Christmas tree created by the students at Leach School in Delaware or all the handwritten and handcrafted paper Christmas ornaments created by children from all over including what seemed to be, every student at Parkersburg Catholic High School. But the surprise we got Thursday was really different from anything else so far.

As some of you may know. Hana loves Baby Signing Time – a show that teaches babies and really young kids sign language. It has great music and is really well done. It is a spinoff of Signing Time, which was a show on TV for older kids. The woman who does the show, Rachel Coleman, also did a show called Rachel and the Treeschoolers, which Hana also loves. She watches them all the time to calm her down. We play them on the iPad when she is getting blood draws, echocardiagrams, shots, dressing changes, etc. She watched them to keep her calm so she wouldn’t throw up during tube feeds at home and also to keep her occupied when we had to patch one of her eyes for an hour a day. They work like magic. We were introduced to Baby Signing Time by some friends from college who bought us the DVDs. I don’t know what we would do without these shows. I tried other shows and they just haven’t worked!

Well a very special friend of Hana’s decided to contact Rachel Coleman to tell her how much her shows meant to Hana and that she watches them everyday in the hospital. So Rachel recorded a personal video message to Hana and sent it to us! In the video she talks to Hana and walks through the studio and backstage and shows some old props and outfits from the episodes. It was really awesome. When I showed it to Hana she was mesmerized with a concentrated look on her face trying to figure out how the woman from her favorite shows is on this video talking to her. It was very, very touching. I cried. Paul was amazed. Rachel Coleman is obviously someone really dedicated to children, generous with her time (she is also sending Hana episodes of Signing Time) and a genuinely good person. It meant so much to us. Rachel has one daughter who is deaf and another daughter with cerebal palsy.

If you have kids I highly I highly recommend her shows. They are not only educational but they teach about kindness and include really great music. Thank You Rachel Coleman!


Hana watching her video from Rachel
Hana watching Rachel and the Treeschoolers

Day 53 in the hospital, Day 35 post-Berlin Heart, Day 26 on the transplant list.


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!