Breathing a little easier

When people ask me when Avery is coming home, I look for the answer myself. There is this seemingly far away, obscure time, but I can’t see it. My inability to see that time has nothing to do with any doubt that she is going to come home; I’m certain that she is. It’s just that there is no date on the calendar and that there are still many trials ahead of us. So I am counting milestones, knowing that each one gets us a little closer to that far away, invisible day.

Today brought smiles to both Robin and I. When we arrived for our morning visit the girl working at the front desk told us that a bag had been left for us and she told us who left it. She then told us that the family that left it was leaving the NICU. This family had walked through much of the same hell we are living and now, with their second girl going home, was graduating. Am I jealous? Maybe a little, but extremely happy for them! While we were at Avie’s isolette, reveling in a story that her nurse had for us, we were advised that the family was at the front desk and wanted to see us before they left. As we walked down that long hallway to see them off I felt the lump in my throat and the tears began to well in my eyes. For the sake of my new friends I fought the tears away.

While we were marveling at the beauty of the baby many more of our NICU family emerged, some coming and some going. All stopped to congratulate the family and today seemed to be a good day for all of us. Knowing that we still have months to do in this prison, I doubt that we shall see that family any time very soon, but I do not doubt that at some point on that invisible calendar our children will play together and will have a bond that most other people will never understand.

Back at Avie’s bedside we asked the nurse to continue her story. She explained that earlier in the day she had been working with our baby and that one of the respiratory therapists  was also there. She said that she had to leave Avie, somewhat suddenly, to go tend to her other baby and that when she came back she saw that Avie was now laying on her belly. Confused (and probably a little angered) she asked the therapist if she was the one that had turned the baby. The answer was no. So it appears that Avery decided that she was tired of being on her back and rolled to her belly. We know this was a fluke. It has been explained to us that as humans we don’t start using the part of the brain that controls such actions until later and that with Avery’s brain injury there is a chance that we might not see it until even later, if ever. But it still shows a considerable amount of strength and right now a show of strength is huge for us. After all, we were told to expect her to still be near comatose, so rolling over is quite a feat.

Then we spoke with the doctor. Some people just have a perfect way of delivering news and this doctor is one of those people. Even when he gives us bad news it seems a little easier to take. The news he gave us today wasn’t bad at all. He explained to us that though she may have to go back onto the ventilator at some point, it is his plan to take her off and put her onto the CPAP (continuous positive airway pressure) machine within the next few days. For those not fluent in the NICU vocabulary (and I still have a ways to go myself), this is progress and basically means that while she will still receive support, Avery will now be trusted to breathe on her own. And with this progress, Robin and I will be able to hold her more often.

Before today’s visit the prospect of her going onto the CPAP machine was almost as invisible as the date that we will take her home. It was something that I knew about but also something intangible, a somewhat distant carrot being dangled in front of my nose urging me forward. With Avery making this progress and breathing better I am breathing a little easier.

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4 Responses to Breathing a little easier

  1. Nancy says:

    Today at a meeting at church I sat nest to a women who was bragging about her little grandson. She told me all the little things he did each day, like watching TeleTubbies, as if they were amazing. I kept thinking to myself that this grandma was a little “off her rocker” if she thought these little daily things were a big deal. Then she explained to me that this boy was born at 24 weeks and had so many challenges to face she never thought he would reach these milestones. He is three years old now and is starting Sunday School at my church. His only lasting health issue is severe food allergies!! SEVERE FOOD ALLERGIES! I think God works miracles and Avery is one of his most special miracles! Love you!!

  2. Nicole Malachowski says:

    CPAP already…wow! She is amazing. You all continue to be in my thoughts and prayers every day. Soon, your time at the NICU will conclude, and parents will be clamoring to the front desk to wish you well. Next Friday my husband and I are catering brunch for the NICU staff who saved our twins lives. You are correct, the bonds you make run deep and will last a lifetime. The NICU experience is a crucible…you will all come out stronger on the other side. I promise.

  3. Katie and Clint Wagner says:

    CPAP!!! That’s a big step! Way to go, Avery!

  4. Diane Sheridan says:

    CPAP is a huge step…in the right direction!! You will see amazing improvements in Avery as you get to hold her more and she will continue to surprise you. Holding her in your arms will be beneficial to you and Avery and soon you will be that couple in the hall taking your little girl home. I know it is hard to imagine but that day will be here soon, I’m sure. All of my friends wearing the warrior bands ask about her every day and we are all still praying and expanding the prayer chains. Love to you all!

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