Little Things

Things have been going well. Hana still vomits once a day. Today it was in the morning and it wasn’t too much. I guess what makes her vomiting different, perhaps, from other kids that may vomit a lot is the intensity of it. There is usually crying, choking, and a lot of dry heaving. It is not like you look over and say, “Oh, she vomited!” It is usually much more dramatic. Not always, but most of the time.

I feel like things are really starting to come together. This is not without a lot of help and not enough sleep. What makes things busy for us, busier than a family with one baby might otherwise be, are the little things. It is pumping breast milk, washing pumping supplies, washing bottles, rinsing feeding bags, cutting bandages into ovals (and hearts), measuring and mixing formula, washing syringes, ordering meds, picking up meds, drawing up meds, ordering adhesive remover and NG tubes and feeding bags and syringes and adhesives and formula. It’s sending messages to doctors, logging when you fed her and gave meds and when she vomited and tried to eat solids. It’s starting her tube feed at the right time, but not when she is rolling around or when its time to nap. Its talking to the case manager about supplies and samples and breast pumps and prescriptions and what messages have come from Stanford and what echocardiagrams I need to take to them next time I am there and how much Hana weighs this week and how many times she vomited and when.  It is a lot moving parts. Not too many of them can slide, either. They all have to get done and by a certain time and not too early either!

This is why all the help has been fabulous, because keeping up with all the new stuff leaves little time for normal things like grocery shopping and making dinner and cleaning and paying bills and doing finances and taxes and laundry. But each day it gets better, mostly. Today was a good, low-key day. We took Poppy on two good walks and spent the rest of the day getting naps (Hana, not me) and attempting solid foods and bottles and giving tube feeds while she was upright and awake but still getting time to practice crawling on the floor. Tomorrow we go back to the GI doctor. I have a long list (in my head) of things to go over, like choices of medications, and weight gain and types and sizes of tubes and formula, volumes and rates of feeds and how much to fortify and when I should stop pumping breastmilk. There are more questions, I hope I can gather them all together before I forget!

Here are some photos from the last couple of days.










CT Scan

So, we were kind of hoping that the CT scan would show something wrong with Hana’s coronary arteries because that is easy to fix (relative to a heart transplant). We knew the likelihood of all this being a coronary problem was very slim. As it turns out her coronary arteries are just fine, that is no longer a hope.

With all the unknowns, my dad keeps asking, “What should I be rooting for?” There’s a very slim, outlying chance that, given enough rest, her heart could recover. Or it could recover enough where she wouldn’t need a transplant for years. The mortality rate for transplant patients increases the older they get, so delaying it seems best. But, because she is so young, if she got the transplant now they believe that there is less chance of her body rejecting the heart, therefore making now more ideal. They don’t have enough data on transplants in infants to be able to say with certainty if now is for sure the best situation. So, it’s hard to know what to root for.

Here is Hana about three weeks ago:


Presidents Day Plan

Today started positive despite the arrhythmia Hana was having in the night. It was the best I’ve seen her since arriving at the hospital. She was playing with toys and alert. When she was sleeping she looked like the baby I know at home!

Today they took out her breathing tube and I heard her little voice for the first time in a long time. Unfortunately, despite doing beautifully on the CPAP, she had to have the breathing tube put back in. She was really struggling to breathe and she was trying to cry. Putting the breathing tube back in was really scary. Her heart rate was crazy. Her throat was so swollen they had a difficult time getting the tube back in. I cried and kept visualizing her safe and cuddled in my arms. They don’t think the swelling has to do with her heart. They’ve started her on a steroid to help with the swelling and will try taking the breathing tube out again in a couple of days.

We got to see Poppy too. We have amazing friends too! I can’t say thank you enough.

This morning:


Breathing tube out:


Me and Paul reading her a story last night:


Hana and I dressed to practice “swimming” in the bathtub about a month ago:


Sometimes I look over at Paul and I think, “How is it that this is happening to us? How is this possible?”