cardiomyopathy

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.

Today Hana had her regularly scheduled checkup with her heart failure/transplant cardiologist at Lucile Packard (at Stanford). Her weight is up to 7.7 kg (almost 17 lbs) which is 170 grams more than last Tuesday. They were able to get her blood pressure (sometimes, most times, they aren’t able to get it) which was 108/55. They could her an intermittent gallup in her heart. They talked about her creatinine levels. They decided to adjust her Lasix so she is more dehydrated. She is more dehydrated than most normal babies, but too hydrated for a baby with a poor heart. But the overall assessment is that she looks great. They called this her new cruising altitude.

That means that we will watch the weight gain trajectory she is on. They will still be increasing some of her meds until they get to the levels that they want. We will watch the vomiting, since this is a normal occurrence for many tube fed babies, but there seems to be much hope that she will eventually take things by mouth and the tube can go. One vomit a day is not so bad, they say. She recovers well. They said we can all relax a bit more and just focus on enjoying our baby. The cardiologist said he didn’t even want to bring up “the transplant topic” on this visit.

They increased her Lasix from twice to three times a day. They doubled her Carvedilol again. They will wait until next time to increase her Enalapril. They want to do bloodwork again in a week to check how she is doing with the increase in Lasix. We will do another echo at Kaiser in a couple of weeks and we will go back to see them at Stanford in a month.

I am feeling much calmer and relaxed. They even said we could think about making travel plans, including a possible airplane flight. They said to just treat her like a normal baby. I can take her swimming again and they also said to go ahead and take her on the bus! I’ve been avoiding the bus because of small, enclosed spaces with lots of people, but it has kept us confined to walking distance from our house (and we only have one car which Paul takes to work).

I think we are really starting to get into a rhythm. We definitely need less and less help at home, most days. I could still use more sleep. Some of the conveniences that we pay for people offer to us are still making it manageable, but I definitely see a cruising altitude for all of us soon! We are so grateful for all of the support and help that we have received from so many people!