Four years ago I welcomed that tiny baby (3lbs 11oz, 16in) into this world 8 1/2 weeks early. I had been in labor for 37-38 hours with no meds, was exhausted and scared to death. The hand you see is me taking his temp around 1am. That was the first time I got to touch him and that was it. No more. I wanted to rub my finger across his skin but they told me that his nervous system was too sensitive that I could barely touch him and had to leave it there. A touch (with my fingertip) too hard or too long could be hurtful.
Looking back I'm glad I was so tired. Had I not been I think I would have been a basket case. I was alone (James was at home) and so close yet so far from my child. Luckily, I got some sleep that night; there were many, many nights after that that I didn't sleep.
The next morning I missed visitation time by 30 minutes so I had to wait 3 hours to go see him. I made that long walk to the NICU alone, shaking. I scrubbed in and put a gown on, excited to see my child, only to be taken to another room to talk to his doctors and nurses. Finally, FINALLY, I was aloud to hold that sweet, sweet boy. For 10 minutes.
Ten little fucking minutes. I walked back to my hospital room and stared at the wall for three hours until I could see him again. Ten minutes.
This time I walked back to the room to call James and tell him to come to the hospital. I couldn't be alone any more. Instead of being the calm, sure person I am, I cried and cried.
When I went to see him again I was still very upset. His pulse and oxygen started going nuts and I had to put him back in the incubator. Seven minutes. The nurse took me aside and told me she knew how hard it was but I had to be calm when I came in. The baby could feel my emotions and it wasn't good for either of us.
I walked back to my room and told myself that was the last time I would ever be upset about the situation my child and I were in. That was the last time I would cry, that was the last time I wouldn't be strong for him.
The NICU is a place full of two steps forward one step back. Although sometimes it's two or three back before you get forward. I was VERY lucky that Jeramyah didn't have more problems than he did. He was a great weight for how early he was (they guessed he'd push 9lbs if he had went full term!) and I had gotten one dose of steroids to help his lungs before he was born.
I went home, alone. There is nothing I've experienced like the feeling of leaving the hospital with out my child. Taking all the balloons and flowers home, but leaving the most important thing. Knowing my baby was up there and I was clear across town if something happened.
The next week and a half was pretty uneventful (which is a WONDERFUL thing in the NICU). I watched families come and go, some staying only a day, others having been there longer than us. Then suddenly I realized I didn't feel like I was Jeramyah's mom. I knew I loved him, but I didn't feel like we belonged to each other. He knew these nurses more than he knew me. He probably knew their smell, their touch. This feeling was worse than leaving the hospital alone.
The main concern with J was that he had a PDA. This is common in preemies, even in full term babies. It's where one of the valves in the heart doesn't close like it should. It actually happens a lot. They put Jeramyah on meds and it closed right up - perfect! Then when he was about 3 weeks old it opened again. No worries the doctors assured me at first. Then they came in and looked at his heart. It was pumping fluid into his lungs, quickly. They started him on a ton of medicines and I went back to only being able to hold my child for short periods of time. This did not help the feeling I had of being useless to my child.
The doctors told me that the surgeon who does what he needed was out of town. The meds were helping and we'd leave him on them until the doctor returned. He was going to have heart surgery within a couple of weeks. This was the only other time I broke down while Jeramyah was in the hospital. I went into the Ronald McDonald room, called my mom and cried. I was angry.
I tried to calm myself down before I went back into the NICU but I don't think I did very well. I scrubbed in and headed to his room only to be met by the nurse with a grim look on her face. She told me I could sit and look but I couldn't hold him. He wasn't holding his temp up very well and his oxygen was on the low side.
The next morning I come in not knowing what to expect. I had called around 3am and they said there was no change. Shift change was at 7am so they don't like you to call then. Feeding/visitation was at 8:30 so I made myself wait until I got there. The nurse looks happier, saying he's leveled out some and I can hold him but only for a few minutes. I cuddled him close to me and his heartbeat steadied, his breathing became smooth. I knew then that he knew who I was, too.
When Jeramyah was a month old they came in and took another look at his heart. He was doing better. They took him off 2 meds and watched closely for 24 hours. The next day they told him he might not need surgery after all. He didn't.
Although time in the NICU was hard, there were some good times too. We had a team of wonderful nurses that helped me so very much during that time. I now have a bond with my child that I'm not sure I'd have otherwise. I knew things I wanted, didn't want, couldn't have, etc if/when I had another baby. I grew up a lot during the time Jeramyah was in the NICU. I became a stronger person, a little more confident in my abilities to love, to care. I learned to look, appreciate and enjoy the little things (literally!). I learned to measure life differently. My life seemed to hang by the weight check preformed every night. Who knew a quarter of an OUNCE could mean so much?!
(That's Jeramyah in PREEMIE clothes!!)
Jeramyah was able to come home when he was 6 weeks and 4 days old. Exactly two weeks before his due date. He weighed a little over 5lbs. The hole in his heart was still there, and it was still pumping fluid into his lungs, but he was on a medicine that helped control it. I was excited we were so lucky, I saw babies leave on machines and tons of meds.
(that's the day he got to come home, next to his Daddy's size 12 shoe).
I remember when we got home I was afraid to walk and hold him at the same time. I would have VIVID visions of dropping him and him shattering to pieces like a glass doll. It took a long time for me to feel comfortable (and like a mom) to that little boy. But the older he got the more my love grew, the feelings grew.
We were at one of his doctors every day for a week and a half after we came home. Then once a week for a month, then every other week, then once a month. They took him off the heart medicine when he was about 5 months old and the hole closed up shortly after that. I was so happy when the cardiologist told me we now only had to come every 3 months! I was even happier when he said, 6 months, then yearly, then never again!
Once Jeramyah was a year old they stopped worrying about him as much. We still had to go to the high risk clinic, make sure he was on track, that there weren't any long term problems we couldn't see yet but for the most part he was fine. When he hit 18 months the Dr told me I could stop adjusting for his age. I didn't know how to live life with just one age - his real age! I was so used to having his real age and his adjusted one (what he should have been if he went full term). What he should have been doing for his real age and what was okay for his adjusted. It was like keeping track of two babies, the one I had and the one I should have had. It took me a long time to get out of that habit.
Now, most people don't believe my four year old, 43lb 40in child was ever that little. That at one time I was afraid he wouldn't live and/or that his quality of life wouldn't be what it should be.
I'm so thankful for what we went through. But I'm more thankful that my son is so determined; that he is a fighter.
