Wednesday, November 4, 2009

The NICU Rollercoaster

They have a saying in the NICU, that they share with you almost immediately, the NICU journey is is like an intense rollercoaster ride. You will have steep ups followed by sudden downs, sharp curves and mind-bending twists and turn.

The night of my son's birth was a rough one. Seth and my mom both stayed in my hospital room with me. I would drift off to sleep only to be suddenly awoken by horrible nightmares involving the events of the day. I could not yet get out of bed on my own, I was too weak, so I sat there fearing everything that could possibly go wrong. Eventually I realized I could turn on a lamp and write in a journal that Seth's mom had brought me without disturbing anyone else. The following are a combination of excerpts from that journal and the website that was sit up through the hospital to keep Colton's many prayer warriors updated.

November 26, 2007
Colton is stable but having to fight to stay that way. His lungs are horribly underdeveloped. They gave me a steroid shot to help with the development but it takes roughly 24 hours for that shot to make any difference. My leg still hurts, the nurse had to jab it into my thigh. I had him only a couple of hours after the shot, meaning it didn't really help. If I could have just held him in a little longer. At 2 (am) my mom and Seth said they would wake up and take me to the NICU to see him. I already love him so much. I'm so scared.

November 27, 2007
Colton has received 4 blood transfusions in the short time he has been alive. I have been told this is very common. There have been several scares, he desats often, meaning his vitals go below what they want them to be at. At first his ventilator was breathing entirely for him, now he is breathing 13% on his own, I am so proud of him, his little body is working so hard. I need him to hold on, is that selfish? I need him to make it. A head ultrasound done earlier revealed that he had some bleeding on the brain, they grade it from grade 1 to 4, 4 being the worse, his is at a 2, it can get better or not, they will check it often. He is also under a blue light for jaundice and has to wear tiny foam sun shades. His eyes are still fused shut as they would be in the womb, but they still need to be protected. I am going to be released from the hospital at 10 tonight. We are on a waiting list for the Ronald McDonald House here in Lexington since going back home to Frankfort would mean being 30 minutes away from our son, we don't feel comfortable with that just yet. Tonight they are letting us stay in one of the hospital's four rooms reserved for parents of children who are "touch-and-go", it is only feet away from the NICU. I'm so thankful I do not have to leave the hospital just yet.

November 28, 2007
I had to leave the hospital today, everyone convinced me it was best for me to get some fresh air and some form of nourishment other than hospital food. On the shuttle ride from the hospital to the parking garage, I looked out the window up at the 4th floor and cried, it was one of the hardest things I've ever had to do, to leave my baby behind. We found out today that Colton had to be resuscitated for seven minutes when he was born, for seven minutes my son was dead. Right now I cannot tell you how thankful I am for the medical advances that have happened in the last decade or so, without them Colton would not be alive. His brain bleed has gotten worse, moving from a level 2 to a 3 today, it is possible for it to correct itself. I haven't yet asked (out loud) what happens if it doesn't. I am sitting at Colton's bed side as I write, he is so amazing, I want to hold him, to snuggle him, to let him know I am here. I can't do that just yet but the time will come, when he is ready.

November 29, 2007
We are now staying at the Ronald McDonald House, the people are nice but the mood is somber, everyone is so worried about their children. A nurse told me today that preemies usually go home around their actual due date, his is March 17th, St. Patrick's Day. It was nice for someone to even mention the fact that he would even get to come home, I know he still has a long way to go but I am trying to be optimistic. I think the Nurses feel like if they are too optimistic they will give us false hope, no need to tip-toe around me I already have exuberant amounts of "false hope". I am finally able to produce breast milk and administer it to Colton through a syringe and feeding tube. He only gets a microscopic amount, but I actually feel like I am doing something to help him, they say it is the best thing for him.

November 30, 2007
We have a new nurse today, her name is Heather. I can tell she is going to be our favorite.

December 3, 2007
We have been going uphill on the "NICU Rollercoaster" for a short time now. Colton is stable, nothing has really changed. I am so terrified that soon we are going to find ourselves plummeting over the edge of a sudden drop.***

***If I had only known how right I was...

Next: Holding on for Dear Life

1 comment:

  1. Thank you for this powerful post. A rollercoaster ride is such a good way to describe the lives of parents of preemies. Thanks for including the March of Dimes fight for preemies. Hopefully, together, we all can make a difference in the lives of future babies.