Today, Hana is 10-months old! Half her life ago she had already started to show the signs of heart failure, but we didn’t know. Yesterday she went to Stanford for an appointment with her heart failure/transplant cardiologist and nurse practitioner.
Yesterday was a very busy day. I also had a phone appointment with Hana’s dietician, who wants to increase the amount of formula we use to fortify the breast milk. The dietician was also very encouraged to hear how much Hana has been eating and drinking. At Stanford they actually wanted to decrease her volume of fortified milk to entice her to eat and drink by mouth because she is hungrier. The Kaiser dietician and the nurse practitioner at Stanford will talk and get back to me on what the plan is for the coming weeks. If we can double what Hana is taking by mouth then we can start talking about a plan to wean her off of the NG tube! I couldn’t believe we were actually having that discussion. It just seems like it has been such a long, slow, painstaking process that I can hardly believe that the end may be in sight!
The overall conclusion from her visit at Stanford was that we should treat her like a normal baby. They didn’t hear a gallop on this visit, like they did last time, which they believe the increase in her Lasix has helped. As planned, they increased her Enalapril to 2 mL twice a day. Next week, if everything is going fine they will double her Carvedilol to 4 mL twice a day. They think she looks great. They think she is gaining weight beautifully. She weighed in at 8.05 kg. Her blood pressure was 90/60. We talked about traveling. They said to travel, just let them know when we travel out of the area and where. They said to take her on a flight. I asked if they really thought it was okay to go as far away as Hawaii. They said, “Take her to Hawaii!” We may finally get to reschedule our trip! They did say to keep our travels to Oahu because that’s where the pediatric cardiologists are in Hawaii. Someday we will still try to take her to Maui, so we can take her to her namesake, Hana.
But first things first – we need to go back east to see friends and family!
Even before that, we need to get her off the NG tube. To do that we need to get her eating more solids and drinking her milk. Then I need her to start taking her meds from a syringe. It has been really difficult to get her to take foods now that Laura has gone. Today was the most frustrating day yet. I will say that even though she was refusing anything but some yogurt (I tried whipped potatoes and whipped yams with coconut oil) she did drink 175 mL out of Mr. Juice Bear (we call him Milk Bear). It wasn’t 175 mL all at one time, but throughout the course of the day. That is almost six ounces! I am wondering if Hana’s ability to control the amount of milk she gets inspires her, rather than me trying to force foods in her mouth. Tomorrow I am going to try just putting food and a spoon in front of her and see what she does. I’ve tried this before with not much luck, but she seems more interested now.
Next Wednesday it will be time to replace her NG tube. I decided that after her morning meds I’m going to take out the tube and leave it out – at least until after our feeding specialist appointment and see if we can encourage her to eat more when the tube is gone.
It’s felt like a really long week since Laura left. The house is a wreck. Stuff is everywhere. Paul and I have had some late nights getting everything done. The time I spend trying to get Hana to eat is such a huge time drain. I was very grateful for some awesome help today. Tomorrow my friend Erin comes from Pennsylvania! We grew up in the same neighborhood and have been friends since we were two! I hope we can continue to focus on inspiring Hana to eat and drink even more.
After the visit at Stanford I was so happy! I can’t remember the last time I was that happy. I remember being happy when Hana was able to breathe on her own. I was happy when she was moved out of the CVICU at Stanford. I was happy when she was discharged from Stanford. The next milestone is to get the NG tube out. Then the waiting game begins. We wait and we see how Hana does. It could be a very long wait, hopefully, before she starts to show signs that it is time for a heart transplant. In the meantime, I will be daring and continue to hope that her heart heals completely.