Hospital life and Hypotonia: when the NICU follows you home…

Let me tell you what you are about to read. This is a recap of our story and an update on what is currently happening in our lives. I want to share this with you for two reasons: 1) Some of you just started following our journey, and where we have been affects where we are going. 2) I need people to know something very important…

When you leave the NICU, your life does not automatically reset to “normal.” Your story will forever be changed, but there is a powerful purpose for that.

Our Story:

I went into labor when I was 31 weeks pregnant. I was immediately life-flighted over an Trencheshour away from our home. Once there, I was given every drug possible to buy my girls some time. We made it to 32 weeks, then the medication stopped working and Lani and Libby made their debut. We spent eight and a half weeks in the NICU, and 9 months in specialist care. We missed so many “normal” milestones, like cute first bath pictures, or getting to introduce our new babies to anyone and everyone. We foolishly thought that all the worrying and restrictions stopped at the NICU door.  When that was clearly not the case, we just “moved the goal post back” and thought that after flu season ended it would be “our time to finally relax.” Surely normalcy was just around the corner, all that other stuff is what “only what happens to other people.”

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Lani: April hospitalization

Flu season came and went, and by God’s grace, and a lot of upset people over the holidays, we made it…so we thought. In April of this year, Lani and Libby got what is called the “Astrovirus.” It sounds epic based on the name, but it is actually a mild virus that rarely ever causes complications. Well, after a week of fighting to keep fluids in them, my daughters became extremely docile and were no longer urinating. When we got to the hospital, both girls had dangerously low blood sugars. Libby was able to bounce back in the ER, but Lani’s sugars kept dipping lower and we were admitted overnight for IV fluids and pain meds. The doctors came in to talk to us about what these complications from such a mild virus likely indicated.

The IMG_0774consensus is that our girls are immune-compromised due to their prematurity. We were applauded for keeping them safe and healthy during flu season, because contracting the flu would have likely been fatal. We took a few deep breaths, canceled our upcoming vacation plans to avoid extra germ exposure, and we decided to just keep taking one day at a time. That’s what we have been doing since they arrived, and this was yet another moment that keeps us hugging both of our daughters just a little bit closer. A lot of people don’t understand that are lives are a bit different than most, and that’s okay.

One major frustration we deal with on a daily basis is the fallacy that when children “look normal” they are expected to “be normal.”

Most people understood that we had to navigate things in our own way when the girls LOOKED like preemies, but support faded over time as they grew bigger. Our first milestones as a family were more like “inchstones.” Instead of “first smiles” it was “decreased level of breathing support.” We watched our daughters learn how to survive, which involves a host of things that most people take for granted. Then we finally arrived at the big ones: first time crawling, standing, and walking.

Was this it? Were we finally normal?  We relaxed for a moment, but this was about the time we noticed something was wrong. Our sweet Lani, who was always our “first” at everything, was not able to stand up correctly. Her right leg and foot were always turning in, and she would fall abruptly and frequently.  We had no idea what that meant, but we figured it would be one more thing she would grow to overcome.

Where we are now:

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Lani getting fitted for “princess shoes”

Several weeks and numerous falls later, my Mama instinct was screaming at me. We took Lani to get evaluated and then she started going to weekly physical therapy. Six weeks later, the conclusion was made: Hypotonia. I had never even heard that word before, but I have since learned as much as I can about it. Lani’s muscles are not weak, the issue is that her muscles are not getting the messages from her brain to keep a certain tension. Muscles strength can change, muscle tone cannot.

There is no cure for hypotonia, but that just means we need more tools in our tool belt.

Our first new tool, “princess shoes!” Lani will need to wear braces called SMO’s for the unforeseeable future. Our second tool is to continue physical therapy and to monitor her alignment as she grows. Hypotonia is a symptom, not a cause. The most likely cause of Lani’s condition is her premature birth. Her muscles and her brain didn’t have enough time to work out their communication. As a result, Lani will always have to do things a bit differently than most of her peers, but we do not know to what extent at this time. It feels like the NICU followed us home and never left, because our idealized sense of normalcy never came. While this has been a hard reality to fully process, we praise God for His ultimate plan for all of this. God uses weakness to show HIS strength. We have already seen, and continue to see, how much He has woven a tapestry of grace through Lani and Libby’s lives.

 

Those “other people” that stuff happen to? That’s us.

“Normal” is no longer something we crave though. We have learned so much by letting go of that ideal, and leaning in to what God has called us to instead.

At the end of the day, our daughters are healthy and they know they are loved… aside from that, I don’t care if they won’t do everything just like their peers. I wouldn’t trade our lives for anything.

Our story has a powerful purpose. I can say that with absolute certainty,  because it is ultimately His story.

Click the links below to read more of our posts on NICU life:

A letter from the NICU        The Story Behind Her Eyes…           365: our NICU grads!

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