Taking Stock

Tuesdays are eye exam days at the NICU and with each of the exams that Avie had we were happy to hear that there was no sign of Retinopathy of Prematurity (ROP), that is until this past Tuesday.

At approximately 7:00 pm Robin received a telephone call from the hospital. The doctor on the other end explained that while this was the first time that the condition was observed in Avery’s eyes, it had progressed so quickly that surgery was required the next day and he further explained that we needed to be at the hospital by 6:00 am so that we could sign the paper work authorizing the anesthesia. She explained to him that we would be going in later that evening and that we would sign the paper work then instead of trying to get to the hospital so early. Then there was the discussion about how, with her brain injury, Avery might have more problems than other children and that since the surgery could not be completed while she was wearing the CPAP mask the doctors would likely need to re-intubate (placing a breathing tube down her throat and using a ventilator to provide breaths) her. Slightly angry and more likely sad, Robin recounted the discussion that she had with the doctor for my parents and I. Angry because the doctors and nurses continue to harp on the fact that Avery might have more problems and sad because the administration of anesthesia meant that the baby’s feeding would be discontinued and then started again at a smaller quantity. And, re-intubating her would mean that strides thus far in her respiratory development would also start over. Needless to say, with Sienna’s memorial being scheduled for Friday, this news came at a time when we really didn’t need to hear anything even remotely bad.

That night, when we arrived for our evening visit, we were shocked and excited to see that instead of re-intubating her the doctor had decided that he would try to move her forward instead of backward. Immediately we both noticed that in place of the cap and mask that she had been wearing for the CPAP, Baby Avie was now wearing the high pressure nasal cannula-a step forward in respiratory terms. The nurse was quick to warn us, however, that she might not be ready for this step just yet. As we kissed her goodnight, Robin and I both told Avie how proud we are of her and that we would be there in the morning after her surgery was completed.

Avery wearing a hat that was given to her by another happily "graduated" NICU twin girl, Soren.

Enjoying her purple pacifier...

My night was nearly sleepless. I couldn’t help but wonder if the progress our baby had made up to that point would be for nothing. I also began to question whether the surgery was a necessity. I doubted my ability to deal with the chance that even with the surgery, Avery might still go blind. And sadly I began to think about the potential that all of the worst case scenarios might actually come true. As the first light of the sun began to shine through our bedroom window I rose and called the hospital. Nothing had been done yet, duh.

I busied myself and my parents with a walk through Old Town and pointed out the various sites that I have learned about over the past seventeen years, trying to push from my mind the fears that had crept in while I was sleeping. But when we got home Robin told me that she had just been on the phone with the doctor that had done Avie’s surgery and that he said everything was fine. She further told me that after speaking with the doctor she spoke with the nurse that was present during the surgery and that the nurse told her that not only had everything gone well, but that Avery had done better in a respiratory sense than any other baby that nurse had seen in five years. She explained that Avie would be less active than her usual self and that we should expect her to be drowsy for at least five hours. We had heard that before and seen her squirming about after the procedure to insert the ventricular reservoir, so we doubted that would be the case.

Our visit brought us face to face with the effects that ketamine can have on a three-pound baby. Avery was less than lethargic, she was out. Aside from the gentle rise and fall of her stomach and chest area, she looked like a baby doll. There was no movement. We would see this difference for the next twenty-four hours.

During our visit today I looked for the report that usually follows eye exam days as we know that there was one yesterday and to my delight and also fear there was no report. Obviously I was happy because one thing that I have learned is that no news is good news-unless there is something urgent to report, doctors often won’t bother you by calling or leaving a report. On the other hand, the lack of information could mean that there is something else that needs to be reviewed, again I find myself doubting what I have learned.

Another interesting development that came today was the lack of a replogle tube. A replogle tube is a tube that is inserted into the abdomen in order to decompress air that is forced into the belly of infants when they are on CPAP and sometimes when they are on the nasal cannula. Since the girls were born we had not seen Avery without some sort of tube in her mouth. But when we arrived today we noticed that the replogle, which was the last of the tubes remaining in her mouth (her feeding tube is now through her nose), was gone. Unfortunately this progress was short-lived. While we were visiting with her and had her porthole open she began to swallow forcefully, but I could tell by the lurching movements that she was making that she was about to spit up. Then it happened. Avery’s head moved forward and the bile that was disturbed by the stirring of the air in her belly came spewing forth and some of it went through the porthole, striking me on my leg. Sad because I knew that it meant that the replogle would be replaced but amused at Avery’s aim, I called the nurse over and told her what had happened. She advised us that she would be replacing the tube to prevent further episodes. As we’ve learned through this journey, sometimes progress is halted when you least expect it. The time will come though.

 

Still tiny, yet growing every day. We love chubby cheeks!

Avery on the nasal cannula and wearing a special hand-knitted hat from Robin's friend, Karla.

As Avery continues her long journey home we are reminded to take each day for what it is and celebrate the little steps forward with the hope that someday those little steps will result in a big victory. I have never been one to think of only the long term goal, but rather I consider the series of short term goals that help me accomplish the overall objective. I am learning more and more that this is the way one should look at life. And that little girl who has spent her life to this point in a plastic box continues to remind me to be thankful for the blessings I have received. I will continue to learn.

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One Response to Taking Stock

  1. Angel and family says:

    Quintin and Robin,

    Avery is doing so well. You are two strong people. Avery does have great aim. She will get there with time. She has amazed all of us with her strength. I love the miracle hat as well. She is adorable. I love that little girl with all my heart and soul. GO BABY AVERY GO……

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