Hello Baby,
You did great today. We love you and you make us proud. Thank you for being such a fighter. Today is the day of your head ultrasound. Your mom and I, after a good night’s rest, showed up a little before 9 for morning rounds. Immediately we asked the nurses when your ultrasound was scheduled. They said it had happened two hours ago, but the results were not back yet. The stress and worry continued. We felt so anxious. They also informed us that they scheduled an echocardiogram to look at your heart. This was also scary, as we didn’t know it was coming. We were as nervous as I could remember. We just tried to keep remembering Dr. Vish’s statements that there will be ups and downs.
Your mom and I decided to wait out in the lounge area to be near when your results were back. I had one of my dearest friends JD scheduled to meet you at 11 am touch time. He showed up a little early, and we were able to catch up and laugh over coffee. It’s always a great little break from the grind to just sit with a friend. Conversation can be healing and give relief, especially among loved ones. JD immediately saw your beauty; often, it’s hard to see past the tubes and wires and your fragile tiny body at first. JD has a young daughter too, so I think that helped him see you as my daughter and nothing else. I could see in him excitement and joy for me. He was proud, too.
At your 3pm touch time the staff informed us that your ultrasound came back clear! Your mother and I felt our nerves and burdens melt into relief. It was joyous, while in the back of our minds, the fear of the echocardiogram results lingered. We are becoming experts in feeling multiple emotions at once. None of this is remotely simple at this point in your journey. It is always concern and relief, joy and fear. It’s just a big blob. An emotion blob. That’s how I am gonna answer questions of how I’m doing: “emotion blob.” I’ve never been one to reflect on my emotions, but I am seeing that beginning to change.
So you also had a chest X-ray that showed concerning spots in both lungs. It looks like parts of both lungs are having trouble opening. This is also why the oxygen percentage you need in your lungs has tripled in just a couple days. The doctors have planned to change your ventilator, and they seem calm, like this was almost expected. The important thing is how you respond to your new machine. We will know more tomorrow. We don’t care what machine you’re on, as long as we’re able to keep you going until you can do it on your own.
Mom and I decided we could skip 7pm touch time to share a meal with our friends Lindsey and Cait. Turns out, it was just what mom and I needed. We laughed and laughed and enjoyed good food and watched them with their 3-month old, Brynn. Giant baby, at least compared to you. Time with loved ones is precious. I know I keep saying that, but it’s true. Build relationships. Step out of your comfort zone, reach out. Be vulnerable. Share true self. Grow your group of loved ones. It will save you someday. Your mom is finally learning this lesson, too.
We arrived at home exhausted again. We laid in bed and enjoyed milkshakes. Peanut butter, our favorites. We are gaining weight. Whatever. We will work it off later. We got a great call that we were accepted to Ronald McDonald house and we can just check in tomorrow. That’s a relief. They will be a great help. When you get older and have a job, you should donate to them. They are helping us when we are most in need.
We also got a phone call regarding the results of your echo. Not great news. You have a small hole somewhere in or around your heart. Not sure, I didn’t catch it all. the doctors say it isn’t uncommon, and it very well may heal on its own, but it also may not. Time will tell, but they didn’t seem particularly concerned by it, and as of now, there are no changes in your plan of care. Emotion blob.
We love you and are thankful for another great day of having you in our lives. You turn 1 week old tomorrow. Mom and I plan to share cake in bed in your honor.
Letters to Holland 