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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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I started a new facebook page

I started a new facebook page mainly trying to spread some awareness as I learn about EDS and the other issues I’m learning I have. 

https://m.facebook.com/New-Age-Dream-Girl-704151713114993/

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How I found out about EDS.

From the time I was little, I always remember walking around with what felt like a bad sprained ankle. I was always twisting it, so I had no idea it wasn’t sprained. I also have hips rotated backwards, so my feet and knees stick out to the side. I could never run very well. I’d end up twisting my ankle. Even with all that, I never went to the er nor the doctor often so I didn’t think anything was wrong.

I also have always had a nervous habit of bending my pinky fingers sideways to my pointer and just holding them in that position, it was something to do with my hands (I have also had anxiety since I was very young) and I lived by the belief that everyone could do it. My thumb can lay flat against my wrist/arm and I can turn my feet backwards so they’re straight behind me. No one ever told me that (along with the aches and pains that went with being hyperflexible) was strange.

Fast forward, I just had my first baby. I developed severe pre eclampsia over the course of less than a week and had to have her at 28 weeks. We were in the NICU and while she was there, I welcomed every study they asked me to do. One was testing flexibility. That was when I first heard the phrase “hyper mobile” and scored almost the highest score you can get. It blew my mind because I thought you only were flexible if you could bend your pinky to the back of your hand (I can’t, mine goes sideways) and if you could touch your toes or the floor (my hip dysplasia along with arthritis makes it too painful). I started looking into it and found it was, in fact, odd.

Fast forward five years. Baby 1 is now 5 years old. We took her to a specialist due to very early onset scoliosis. I showed him my joints and he said it looks like Ehlers Danlos. I had my doctor confirm it a few days ago.

In a way, I’m glad I didn’t find out until after I had all 3 kids. I am really not sure if I would have chosen to have kids had I known about this (and others I’ve been diagnosed with that I’m going to go into in another post).

It feels almost selfish, although the specialist said my oldest doesn’t appear to have it- and I’ve had several professionals confirm there really isn’t a great test for hypermobility type EDS- it goes off appearance mostly. I mean, genetics are a crap shoot anyways but it feels like I put two kids on this planet to deal with (mostly mild- at times up to severe) pain for their lives.

The pain gets easy to manage. I wouldn’t know what to do if I woke up one day completely pain free (I’d love it, though). When you’re born a certain way, your body compensates and conditions itself. You adapt to chronic pain so you know nothing about normal. It still isn’t something I’d wish on my kids and I hope neither inherit it, my oldest’s specialist said she doesn’t appear to have it, but I’m watching my toddler’s feet. So far, they do seem to stick out and that seems to be one sign.

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Being a taboo parent- I don’t want sympathy. I just want to be able to talk about all my kids.

Being a special needs parent shouldn’t be as isolating nor as awkward as it is. If you have been through a long term nicu stay, it should not be met with awkward sympathy nor should it automatically shut other parents up. I mean, yes, back when I was living at nationwide children’s hospital alone with only my infant, it did get depressing to see how many people came and went. It was a bitter sweet thing to see so many people make the going home announcement while I was wondering when would it be our turn but she’s out now. She’s out, she is healthy and most importantly she’s a survivor. We don’t want sympathy for what she went through. We’d rather have excitement that she made it.

Of course, when you’re the parent of a special needs child meeting other parents who are comfortable around your child is also a challenge. My daughter is and isn’t special she is now 6 and in 1st grade, she’s able to read starting to write and her speaking is finally starting to make more sense. It still gives me anxiety when she’s around other kids. We’re trying to teach boundaries but she’ll still go up and point out an animal or character she really likes on a kid’s shirt. I’ve seen nervous looks on kids’ faces. I do know the ones who are around her on a regular basis like her. When she was in preschool her classmates got excited to see her and I’m still recognized as her mommy. I guess it’s projection from when I was made fun of as a child for walking and talking so different. There are obstacles dealing with lifestyles as well. We see several specialists throughout the year and a few therapies for 1 hour 2 times a week, add that to school work and toting around a fully healthy toddler and meeting people is even harder. I haven’t found baby and me classes near me nor have I found mom meetups like I have read about. Maybe my town is too small, maybe we’re all too busy or maybe I’m just not in the right network to find them. On top of having a premie with a nearly 1 year nicu stay, we also lost our 2nd baby to a deadly birth defect called Anencephaly.

If you think a long term NICU stay is stressful, try being told that this baby, the next baby, the one that you really want to add to your growing family, the baby that you were really excited about is not going to survive. Not only that, but the baby has a severe birth defect that affects the way the baby looks. You read online and you look up the condition and everything that you see is just people disrespecting the babies calling them such horrible names and everything. It just ends up being too much and you are even afraid of mentioning what the defect is called. Amazingly; on the same day, in the same room, in the same hospital, another woman ended up getting diagnosed with the exact same condition. I went home that day, looked it up on Facebook and found a large support group for the defect. We were discussing where we were from and she and I just happened to meet. We spoke on Facebook and teamed up for the March of Dimes. We both do the march every year in both of our babies’ honors. I bet it’s going to be a lasting friendship because of the way that we met.

I’m at a point now with trying to meet people that when I talk about my 2 living kids I feel guilty if I don’t mention one whom I lost, but when I mention her, it brings awkward silence. I have been reading more blogs and more posts and seeing more pages in social media that are trying to break the silence of baby loss and make it less of a taboo subject, but until that day I guess just mentioning that you lost a child will bring the conversation to a close.

It’s not that those of us who have lost babies are wanting sympathy we’re just wanting to find a way to keep the memory and to mention “Hey she was alive, she was here but now she’s not.” It really shouldn’t be so difficult for people to bring up in discussion and it shouldn’t be difficult for those of us who are raising babies who had an extremely rough start; or those of us who have gone through the nightmare of losing a baby to meet other parents and actually have conversations without the conversations turning morbidly serious. Yes, my daughter almost died multiple times. She and I both did. She did have an extended NICU stay and she did have to have multiple surgeries but she’s here now, she’s alive, she’s healthy, she is very happy so why should we be expecting sympathy? And I mean yes, my middle daughter would be 4 years old, she would be going into preschool now, she is not here but she did exist- she was born, she lived and she died. It has taken us a while to accept it. It happened and we had to accept it. We can’t just live in the past and still be depressed with 2 living children who depend on us and depend on us to teach them how to handle the cycle of life and death.
Why does it make people so uncomfortable to discuss? Why does it kill conversations when you’re just trying to mention your other child’s existence or are joining a conversation about pregnancy? I try to keep from mentioning my first 2 pregnancies when I’m speaking with a woman who is pregnant with her first and nervous but talking to friends, I don’t understand why it’s either “I’m sorry” or another way of showing sympathy when the first little girl is healthy and happy now. Skinny, but healthy.

I hope the efforts people are making work and one day talking about less than perfect pregnancy experiences aren’t the taboo subject they are. There are women and men suffering in silence and talking openly helps people newly walking that path see they’re not alone.