Tuesday, August 14, 2012

Tight rope

They say the NICU is like a roller coaster. I would agree, but I think it's more like a tight rope. You might have a net, you might not. There may or may not be someone to catch you when you fall.

The past 24 hours or so have been especially indicative of this in the NICU. I wish this post was a happy one, or a one to celebrate milestones and accomplishments. However, I'm just in the mindset of putting one foot in front of the other, continuing to walk the tight rope we are on.

Yesterday James started having apnea spells and bradycardias so bad he had to be resuscitated several times. Once they finally got a handle on things they still had no clue what was causing the spells. He was clamping down, they said, and not even the ventilator or bagging worked to get his stats up. They figured infection might be causing the apneas and started antibiotics along with a huge assortment of tests. All are negative but they are still trying to rule out different things. Above all, they want to try steroids and get him off the vent.

Maisie had her own brady episode that scared the nurses in the Level II NICU pretty darn good. I swear these babies have some sort of twin communication.

Luckily today was a much better day. They are both being "cupcakes" rather than "dirtballs". (These terms of "endearment" come from a former nurse who worked in the old PSL NICU with our Primary nurse M and Dr Hawkeye).

The NICU is so much of a tight rope that you don't want to make friends, because you are just trying to get out with your kids in mostly one piece. But after a while of running into people in the same room, you start talking and you find things in common.

Yesterday, while James was pulling his stunts and getting the attention of the big docs, our friends / neighbors in the NICU and fellow micro-preemie parents were gathering all of their friends and family around their little one, who had taken a turn for the worse. Today I saw their parents & grandparents in the waiting room and I was hopeful that things had improved. Walking into our room, our neighbor baby's bed was empty and ready for the next baby born too soon.

The NICU is a tight rope. It could have easily been us, but for some reason our little dragons are strong enough to fight on. We are beyond thankful for their endurance, determination, and for every moment they have given us. We fight on for another day, working on lungs, feeding, growing, and developing.

1 comment:

  1. Your babies are beautiful. I've followed your story on the pProm board at Babycenter. We had pProm twin girls at 24w4d in December (jennyp1975). Sometimes it's hard posting over there because even now the trauma still seems too fresh. I try to be encouraging when I can, though, since we had a positive outcome.

    The NICU is hard. I'm sorry anyone has to deal with the ups and downs of having sick babies, but so wonderfully thankful that they can save these babies in the face of such terrifying circumstances. With twins, you get the good days, bad days scenario times two.

    Sometimes the bad days aren't even about your own kids. I remember the day I sat next to my daughter's bed crying for the twins that didn't make it in the beds next to hers. One of my daughters was already home, and I couldn't visit every day because of juggling schedules once she came home. So I never saw the babies because they arrived one evening after I had already been there, I didn't make it the next day, and they passed in the morning before I got there the following day. All I could think was how easily it could have been my girls and how torn I felt--happy for us and heartbroken for those parents I never even saw. Emotionally, it was one of the hardest days for me there.

    I got to know some of the fellow NICU moms from the Ronald McDonald house. It was helpful because we were all going through the same sort of things, but once all their babies went home before ours, I didn't want anymore NICU "friends". I just wanted my babies home in one piece, like you said.

    I hope your stay is filled with far more up days than down and before you realize it, your babies will be home with you.