Waiting Game

Our life turned into a waiting game. Twelve hours passed, then twenty-four, thirty-six, and so on. Doctors and nurses would point out little signs of improvement to us. It was always one step forward, two steps back. When we would go to rounds, the doctors didn't say much at first. Jack fought so, so hard, and he made it to the "magical" seventy-two hour mark. In my mind, I thought that he would be all better, or at least close to it, after those seventy-two hours were over. Boy was I wrong. Jack wasn't out of the woods yet. After a few more days of waiting, the doctors would tell us that we weren't out of the woods, but we could see the edge of the forest...then they told us we were out of the woods, but still in the shadows. It was a very, very long time before the doctors could assure us that our baby was going to make it, that yes, someday we were going to take him home.

Most babies get to come home from the NICU around their due date, that's just how things usually work out for these little babies. Jack was due September 13th. It was July, our doctors told us that we would most likely not be home by then. The recovery from NEC was a very, very long road and required an additional surgery. Not only was this going to be a very long road, but also an awful roller coaster ride.

Jack recovering after surgery. You can see his central line in his chest here.

Jack was "quarantined" for a while because of coming down with a type of pneumonia from being on the ventilator. Anyone that needed to touch him had to wear a gown, gloves and a mask. You can see his ostomy bag here. 

Jack holding his daddy's finger. 

It became clear to us that we were going to have to find long term living arrangements in Peoria. Matt had to go back to work while Jack was still on the ventilator and I could still not drive. We had a few days left at out hotel where I could stay until Matt came back and we could figure something out. So many thoughts, worries and concerns were rushing through our heads. How were we going to do this? I was determined that I was not going to leave Peoria without my baby. Somehow, I was going to be only a phone call away from him. We looked at the Family House that St. Francis offered us, extended stay hotels and even short term rentals. Fortunately, my family has very close family friends that insisted we stay with them while our baby was at the hospital. Thank God for them!

So now I was one of those mom's...one of those mom's that I felt so sad and sorry for before when our baby was thriving and getting ready to go home. I was one of those mom's who only left her baby's side to use the bathroom, pump and eat. I was one of those mom's who had a notebook and wrote down questions to ask the doctors and their answers. I was one of those mom's who never missed rounds. I was one of those mom's who could not hold their baby...and for a short time not even touch him. I was one of those mom's who only saw their husband's on the weekends. I was one of those mom's who looked like they haven't slept in weeks. Yes, I was one of those mom's who very quickly learned the ropes of the NICU and taught them to new mom's. I became a regular.

A little longer than a week after surgery, Jack was able to come off of the ventilator. This was an amazing day! His little cry was so hoarse and weak from the tube down his throat. He still had many other tubes and IV's, but he could breathe all on his own. Eventually, the replogle tube came out as well. Jack was doing well, but was still keeping everyone on their toes. His pain medicine was being weaned down and he was seeming more lucid and with it.

I spent my days reading to him so he could hear my voice. The book I read most to him was "Where the Sidewalk Ends" by Shel Silverstein, goofy rhyming voice included! I sang to him lots too...Twinkle Twinkle, Take Me Out to the Ball Game, You are My Sunshine...I wanted him to know that I was there, that mommy was waiting for him to get all better, and I would wait as long as I had to.

Finally, the doctors told me in rounds that I could hold him! I was waiting so long for this! They said that not only would I enjoy that, but Jack would really love to be held and needed to be held. I walked back to Jack's little bed in a huge hurry with tears in my eyes. I think it was about week and a half after surgery that I was able to hold him again. My belly was still killing me, so I knew how Jack felt. The gash across his tummy seemed to be just as wide as he was. I was so nervous about holding him and causing him pain. I had the nurse lay him in my arms, and there I sat as still as I could be so I would not cause him any pain. I will never forget that day...I remember the nurse that was there, I remember what I was wearing, I remember that Matt was there and I felt bad because I was holding him first. But he hovered by my side and we all lived in the moment.

I couldn't take my eyes off of him...

So things were looking up for Jack. This was going to be our home away from home for quite some time. Looks like we were going to see that new wing of the Children's Hospital after all.  But like I said before, life in the NICU is a roller coaster...