NICU-itus

Nicu-itus is a very serious condition that affects those that suffer in many different ways. Usually this condition surfaces within a month of a child’s confinement in the Neo-natal Intensive Care Unit and causes the child’s parents to have bouts of sleeplessness, anxiety, poor nutrition, and general grumpiness. Other symptoms vary with the individual and may include shifts between depression and elation.

I am definitely suffering from NICU-itus. I can’t remember the first time that I heard the term but I know that it was a nurse who first said it. I explained to her that Robin and I were simply exhausted and sad about all of the ups and downs that we had been through and she told me what they call it. And the worst part about NICU-itus, at least for me, is that it seems like there is never a moment where one can actually take a break from it.

Robin and I are both fairly social people, so we tend to make friends with others around us. It is nice to make friends, but in this environment I’ve found that doing so adds more stress to my own experience. Even when Avery’s having a good day I still find myself concerned with the other NICU families that we know and I feel guilty for celebrating her accomplishments. Likewise, when she’s not having the best of days I feel guilty for not being excited for the accomplishments of the other children. And then there’s the sadness that creeps in when we hear about the disappointments of the other families.

Recently a family with whom we’ve become close was preparing for their son to go home. They had been given a date and then on the evening before he was supposed to be released, we ran into them as we were all preparing to enter the unit for our evening visits and they had with them a car seat. Little Andrew was going to have his car seat challenge. As we stood outside the doors that have become so familiar to all of us, Robin and I congratulated the parents and told them how happy we were for them. While we were laughing and enjoying the success one of the nurses walked out and told the parents that she needed to speak with them. Robin and I could tell immediately from her tone that the news she would give was not good. We still tried to enjoy our visit, but found ourselves becoming sad about what we knew would spell disappointment for our friends. Later we would learn that the doctors had found something that needed to be addressed and that not only would Andrew not be going home the next day, but he had been moved out of the “step-down” room (where the children go when they are deemed to no longer need intensive care). And I know that many of the new friends that we have made have also begun to concern themselves with Avery’s progress; I am sure that some of them have been looking for us in the past few days.

This past Tuesday, eye exam day, I was told that the doctor had some concerns with something that he had seen in her left eye. The specialist was called and we were then told that he wouldn’t be available until the next day. On Thursday afternoon Robin received a phone call and the doctor explained to her that Avery’s retina was detaching and that another surgery would be required. On top of that, there is only one surgeon in the D.C. area that does the surgery and he only works out of Georgetown Hospital, meaning that she would have to be transferred.

We took a day to think about what all of this means and then decided that, for Avery’s sake, we would allow the transfer. The condition was caused by scar tissue that built up on her retina after the laser surgery that she received, and it is causing the retina to pull away. During the procedure the surgeon will cut the scar tissue in an effort to relieve the pressure that it is causing on the retina. Without the procedure Avery will almost certainly have no vision at all in her left eye. Unfortunately, even with the surgery, there is only a 50% chance that she will have vision in that eye.

Our concerns don’t stop with the fairly high chance that she’ll be blind in one eye; we’ve been told about research that is being done in this field and that within the coming years there will be technology that may be able to provide vision for her. We are more concerned with what surgery means for Avery. As we’ve explained before, she will need anesthesia again and will be intubated (breathing tube inserted into her lungs) again. In addition to these risks and regressions, Avery’s feedings will be stopped and she will be given an IV. We were prepared for all of this to happen in order for the ventricular shunt surgery that Avery will have. But now her homecoming will be delayed further as she will now receive the eye surgery, be given time to recover, and then after all her feedings and respiratory settings are restored, she will again go through the same preparations for the shunt surgery. We had been told that while it was possible that we could have Avery home before Christmas, it has now become evident to us that even the beginning of the year might be a bit too optimistic. 

This case of NICU-itus will take at least a few more months to be cured.

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2 Responses to NICU-itus

  1. I know how you feel, especially about sharing in the joy and sadness of all the other families we’ve met. It’s sometimes almost hard to bare, but it’s the price we pay for opening our hearts to others. Besides our amazing children, the bonds with people we’ve met is one of the only good things to take away from the NICU experience. We’re thinking about you all tonight, and will be praying that tomorrow goes well.

  2. Andrea Keller says:

    NICU itis indeed! I know the feeling well. The weekend before we left Fairfax, I cried pretty well for two days straight, just because I could no longer tolerate the ups and downs for our children, as well as those around me. As hard as it would be to leave our kids each day, it was almost as equally hard to return the next day. And we understand your concerns about surgery – we were told at one point that Katharine could need it for her PDA. The good news here is that a couple of months later, it has closed on its own, despite expectations that it would not be possible. You are all in our prayers as you face another big day tomorrow, and continue to struggle with your own NICU itis. And when the time comes for you to make decisions about the second transfer, we’d be happy to share our experiences with you about our move to Fair Oaks. We’d highly recommend it, as soon as Avery and you are ready to make a move.
    PS – Katharine and Christopher send their love, as do we!

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