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When my seven year old came home from the NICU

She was 8 months old, development of a newborn and was still tiny. She was on oxygen, feeding tube and heart monitor.

I tried taking her out of the crib a few times but we had to switch at first from the major oxygen machine (plugged in to the wall) and switch to a small portable tank- that only lasted a few hours. There were a few times the cannula came out and she turned blue so fast it had us terrified. There was also a time we had an emergency situation and had to take her to the hospital- and all the tanks that were newly delivered to us read empty, except one that had one hour left. Luckily, they were able to switch her to a tank when she went into the room in the ER and kept her on it when they admitted her to the PICU (she got a cold and her lungs were too weak to handle it.)

For months, we were so afraid of her blue spells or something happening to her oxygen, we kept her in the crib for most of the day. I finally figured out where to put her big tank in the upstairs hallway that would allow the tube to stretch downstairs and to her bed- as soon as we figured that out, she was only in the crib when she was sleeping.

To this day, she has some strange attachment issues and I feel like her long stay in the NICU followed by our paranoia has something to do with it. I still feel somewhat guilty.

I’ve been thinking back to her babyhood. Aside from the oxygen, she and her sister looked almost identical- to the point my older daughter has gotten their baby pictures mixed up a few times. I still wonder if I had gotten her out of her crib more, would she still be so far behind? She’s playing catch up a lot more now since she has a very talkative sister. Her sister talking is improving her speech (she said the sentence “mommy has to go to work tomorrow” earlier today and she usually says shorter sentences- every sentence she says that has more than 2 or 3 words feels like progress since the condition she has typically comes with only being able to say 1 or 2 words period). She has the genetic disorder on top of being preemie, so I doubt that us keeping her in the crib for the first few weeks(if we weren’t cuddling her in the bedroom) had any affect on her.

I also remember the string of home health care nurses that came and went the first few months and the help my mom gave us because we were 20 and 22 and having a special needs child was overwhelming.

I remember her first cold- the night that landed her in the PICU and the first time she ended up with impacted bowels (she’s now on Miralax and has been hospitalized another time and had to be flushed 2 other times in the ER)

I remember struggling in the NICU to pump, the nicknames they gave me (they called me Bessie because at one point I had the deep freezer, 2 normal sized freezers, their fridge space and my fridge space filled totally to overflowing with pumped milk). I remember the frusteration near the end at pumping- getting a grand total of 2ozs over 30 minutes- then spilling it. I remember the day I finished pumping and dried up, the nurse went out and bought me an energy drink to “celebrate” having my body back.

I remember the nights going to bed alone after chatting with my husband online because I was staying in a Ronald McDonald House out of state while he was home working.

I remember meeting parents who would come in for a few weeks, then leave when their babies got released and it felt like our time would never come.

I remember the day- December 1, 2011- the day we strapped our daughter in her car seat and drove the 3 hours to finally take her home for the first time.

I remember cuddling with her when we finally got her oxygen cannula taken and could see her beautiful face

Now, she’s healthy but still has to see quite a few specialists. She’s reading on her own- even will grab cereal boxes and read those. She loves shopping, shopkins, pink and pretty much all things girly- just like her little sister. When I buy stuff for them- I get the pink for her sister and purple or blue for her. She has different favorite colors on a regular basis and she loves Pete the Cat books, she won a giant Maisey Mouse from a library program/contest last year and the giant mouse is sitting in her bedroom at grandma and grandpa’s house.

 

Her birth and early life has given me a totally different perspective on raising kids and motherhood in general. She and I both almost died, so even when I’m mad or annoyed- when she is screaming or throwing a fit or in my face not letting me breathe on my own, I still am beyond thankful I have her in my life- that her condition has no actual affect on her lifespan and she’ll likely live the same amount of time a healthy person would.

When she was 15 months, off all the tubes and getting more and mroe stable, we decided to finish our family (only wanted two). I got pregnant fast but sadly, she had a different condition and it took her life at 3 hours. We gave up and decided she would be an only child. She started school and I stayed home for another year- then we decided that if I found a job, we were done and there would be no more kids. If I got pregnant, I’d continue staying home for a few more years. They happened almost at exactly the same time. I finally got my first job after staying home for four years and I got pregnant- found out about 2 weeks into the new job. This one was a happy, healthy baby- and our last. After she was born, I had my tubes tied.

I’ve been through it all- loss, complications and healthy and I am so grateful to have both my living girls in my life.

 

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