In My Arms

Do you believe in the saying “Absents makes the heart grow fonder?” I don’t know if I ever did, however, by the time I got to hold Justice the second time I believed couldn’t have been fonder of my precious little daughter.

Justice was 5 days old when they took her off the respirator. At the time, it seemed like forever but I now know to count my blessings for such a short stent. This was one of the happiest days of my life. I was so excited the doctors thought she was strong enough to breathe on the own. It took a few tries and a lot of oxygen but she finally did it. Something got better! This alone seemed like more of a blessing than I deserved.

When my son, Cy, was born, I expected him to breathe and when he did, I didn’t ever think anymore about it. Sure, I was a new mom and would check on him often to make sure he was still breathing in his sleep but I didn’t seriously think he wouldn’t breathe. I never stopped to think how complicated the repertory system is or how much work it take us to just take a breath. With Justice, all of this was now aware to me. She was breathing on her own. What a heroic accomplishment. She was making it, she was living! I knew she would! I just knew it!

Still hooked up to IV’s, oxygen and all kinds of other tubes and wires they suddenly asked me if I wanted to hold her. “YES!” was my first thought and I could have broken her incubator to get her out. Then reality sets in and “Okay, do you think we should?” comes out of my mouth.

On one hand, we really wanted to hold and touch our baby we loved so much. On the other, we didn’t want to hurt her or set her back from the progress she had made in any way. But oh, when my daughter was wrapped up and put in my arms, just my arms, all the tubes, IV’s, doctors, alarms, syndromes, heart defects, everything, it all melted away. She was my baby. Whatever was going to happen, she was not going to be alone. A few days ago, we were two people in my body, we were one. But the changes that happened in her body that were causing her so much distress now occurred when we were one and I was not going to let her fight these battles on her own. Now, she was in my arms, now we were together as a mother and daughter should be and as I helped her grow inside me, I will help her grow in this world.

In the next few weeks, I became much more comfortable with my role as a mother of a medically fragile infant. The nurses were exceptionally great with teaching me how to care for her and how to recognize when things were a little too much for Justice. I learned to change her diaper, wrap her up in a blanket, feed her, put down an NG tube (feeding tube down the nose) and run all sorts of equipment. All of this has to be done differently with a medically fragile infant. Blankets have to be wrapped around wires and tubes, Justice had to be tube fed and would vomit repeatedly and even changing her diaper could make her heart rate drop to an unsafe level. However, with practice and patience, I would do more and more of Justice’s care and ever so slowly Justice improved enough to be promoted to the “Satellite NICU”

The “Satellite NICU,” was an overflow room, if I can call it that, for the babies who were doing better but not quite ready to go home. They really promoted it to the parents and said, “It’s your last stop before going home.” “It’s just for the feeders and the grower’s.” In reality, it sucked. It was a small room with furniture from what looked like the 1950’s and equipment that looked like it was invented for the polio scare. You had less room to sit then the regular NICU and only one, maybe two nurses for six or so babies. It probably wasn’t very bad but when you just came from the other room, it seemed like a demotion. By the time you got to the Satellite NICU, you were ready to go home. I felt I could do anything for Justice by this time or at least I would do anything for her so please, just let us go home.

One Thursday, they finally gave into my pleas, with a bunch of stipulations I had to agree to, and we were going to get to take our not so newborn home. We had all the training, the car bed (very interesting car seat like thing, I’ll post more on it at a later date) and one more test and we are out of here………We’ll how long should an Upper GI take? 3 or 4 hours at most? We’ve been doing this for 16 hours now, what does this mean? I don’t understand. But we’re going home. No, you said we could go home. No, you said we could go home. How long will this surgery take? So you’ll do a bunch of surgeries at one time? Can her heart take that? So how much longer do you think we will have to stay before we can take her home?