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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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When I lost you

When I lost you, not only did I lose getting to know a person. I also lost hopes and dreams for the future. I lost everything I drempt you would be and every potential achievement you could have made. I lost a tiny hand in my hand and a chance to be your mommy.

I lost seeing you smile, hearing you talk, hearing you laugh and picking you up when you fell.

I always wonder if you would be more like your daddy or me. Would you look like a mix of both of us or favor one more?

Would you be an artist, athlete or studious? Would you prefer cats or dogs?

Would you be girly like your sisters or the tomboy of the group? What would your favorite flower be? Favorite color?

What would your personality be like? Would you love or hate school?

When I lost you I have so many questions I will never know the answer to and I will never get to experience.

When you died, so did those hopes and dreams for the future. Your future. My future as your mommy and our future as a family

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EDS, post 30 can your body bounce back?

I know your metabolism takes a slight hit at 30, larger hit at 35 and every 5 years or so keeps shrinking. I’m still heavier than I was pre-kids and reality is hitting me. I knew I no longer had my pre-baby body, but will I be able to go back?

I accepted the fact that pregnancy made my hips more of a problem area than they already were. I only wore a larger size (11-13 in high school) for that reason, but had an hourglass figure. When I dropped to a 14, I tried on some 17s and couldn’t get them past my hips. That was when I read that juniors and adult sizes are made different (1,3,5, etc are juniors. 2,4,6, etc are adult). Juniors are made narrow in the hips where adult jeans are made wider in the hips.

I do know that with Ehlers Danlos, collagen is affected and where it makes your skin stretchy, it seems it may be harder to just bounce back. My scars fade but they still look strange when they heal. I don’t know much else about EDS but I do have an appointment, not only with a genetic specialist, but a specialist who lives with EDS herself. But that’s in a little bit. Right now, I’ve been researching trying to find foods that can help, workouts good enough to help lose weight and tone up but also safe for Osteo and loose joints and anything else that could help me with shrinking back down.

In the past 2 years, I’m down from 220 to about 170. I’m down from a size 20 to a size 14-16. I still have 40lbs left and hoping to get down to a 6ish or 8, maybe and I have 5 years in my mind to do it. If I can get down to my goal, fix what I need to fix diet wise and perfect my ingredient reading I should be able to maintain despite my Hashimotos. I’m seeing that even thyroid isn’t as much of an excuse as people use it. I dropped 20lbs in 4 months on a good dose of thyroid medication and cutting 1 ingredient out. I’m almost 1 month back to the normal (gluten free) lifestyle and finally feeling back to how I was feeling. I just had my thyroid levels tested again and they were perfect.

Right now, I’m trying to buy less processed foods. I have quit drinking Mello Yello (but I did switch to Diet coke for the time being), I’m eating 1 grain meal a day (if that) and the rest are cooked or salad. I do need to cut condiments and I still am drinking my Starbucks double shots (1 a day), I also started to notice my sugar drops when I eat potatoes so I’m switching to sweet potatoes.

The problem is when you have multiple diagnosis’s with several recomendations for diets. Where I have obvious issues with gluten, gluten free is needed (unless I want to spend all day cramping and in the bathroom), I had the diabetic low glycemic diet recommended to me for the reactive hypoglycemia. Cutting everything that was recommended to me feels restrictive. It also makes my OCD mind feel like I’ll be depriving myself and feels like it’s a black/white situation instead of- eat this way and you’ll feel great, eat that way and feel like crap.

I’m working on disassociating food with pleasure or anything related to emotions and trying to associate it with fueling my body and nothing more. Mindfulness helps that. Taking time to savor what I eat and pay attention to it is what I’m working on. Salad tastes great, so does fruit. Sugar and snacks that are heavily processed taste like chemicals but are an addiction- I’ve read all about sugar addiction and cold turkey is the way to go with kicking it. I’ve been thinking about trying a 1 month sugar free diet to try to break it. Just not sure if I have the will power currently. I will start it at the beginning of a month this year, though. Just have to build up and do further research into it to go in armed instead of half assing it.

In my picture, I was 18. I was constantly working out but didn’t know half of what I know now. I was also healthy.

I wasn’t skinny, but I was a good 30lbs smaller than I am now.

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I never thought I’d be the type to let myself go after a marriage and these past 2 years (last year and this year) I’m getting myself back.

I have been with my husband almost 8 years now. Before he and I met, when I was younger, it would take me over an hour just to leave my house. My hair, make up, clothes and everything had to be perfect. After we had our first baby, I had an extra 60lbs (went from 125 to 198 at the end of my first- complicated- pregnancy) and I started stress eating (before that, if I was stressed, I couldn’t eat). I managed to lose 10lbs down to 180 but stuck. I did workouts sporadically but the stress turned to fatigue and even laziness.

With my second pregnancy (the one we lost) my weight stayed the same after the baby was born and I was too depressed to really work on it.

By the time I had my third, I gained up to 220- higher than I ever weighed and was a size 18. This time, I was more active but my thyroid went into hyper due to the toxic cyst and I lost 30lbs in the first 6 weeks and another 20 recently. Now that I’m down to about 170 and a size 14/16 I’m gaining the motivation to continue.

After I had my first baby, I continued with my hair, make up and skin routine but over time, lost it.

In the past few months, I’m working on changing myself. I realized a while back I let myself go so now I’m working on undoing the damage before it becomes harder.

My daily skin routine now involves pre cleanse and cleansing, sometimes exfoliating (not every day- usually 3 times a week to every other day), spraying my face with either rose water or Dermalogica’s Multi-Active toner, moisturizer, then I’ll put on a mask 1-2 times a week. That’s my evening before bedtime routine. My morning routine is the same but after the moisturizer, I’ll put my make up on. That full routine can keep my eczema from acting up too bad. I have found that to keep it down, exfoliating and moisturizing is key.

I’ve studied skin care professionally (I’m a licensed skin therapist) so keeping my skin next to perfect is key. Luckily for me, when my eczema breaks out, it’s mostly still skin colored but the itching does me in. I still get compliments on my skin on a daily basis- I get rid of zits immediately, don’t have black heads and you would have to look at my skin under a magnifying glass to see my pores- my skin has been my pride and thanks to that, I still look as young as I did when I met my husband. I’m heavier now, but I’m also working on losing that (I did make it from 130 to 220, I’m back down to 170 and working on losing the last 40lbs if possible). I’m down 50lbs from 220 to 170 from two years ago (hit my peak weight at the very end of my last pregnancy- but there will be no more pregnancies so I can focus on losing the last bit)

I’m also looking at what types of workouts are best for people with Osteo arthritis and Ehler Danlos Syndrome to try to get my body toned back up.

I’ve been working on trying to get back to how I was in college. Back then, I was active and felt great. I also looked better. I’m not sure how to handle my thinning and really dry hair (the wrong shampoos grease my hair up and make it look wet, when it dries it dries like straw. It’s hard having greasy skin in that one area of my body but then having dry hair. The thyroid issues don’t help at all.)
The selected image is what I looked like in October. I’m hoping to get back to a slightly older version of what I looked like when I met my husband. I’m not trying to look like a teen again (or very young adult) since I’ll be 30 this week, I just want to be about the same size, weight and to feel good again.

The first picture was taken right before my husband and I met (same week)

The one with the hat was shortly after we got together, before I got pregnant and the third was our first Christmas with our new baby (she was 9 months old)