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Things I Wish I Knew When I Was Pregnant

I have had a total of three pregnancies- my first ended at 28 weeks with a partial abruption and severe pre-eclampisa. She was only 1lb 11.5ozs and 13 inches long and spent a total of 8 1/2 months in NICU. She’s now a small but healthy 7 year old. My second was relatively uncomplicated but we lost her. She was born at 36 weeks due to me going into a painless labor and I wasn’t allowed by the doctors to go into labor. She died of a condition called Anencephaly (absence of the skull) and lived for 3 hours after birth.

My third was totally complication free and she was born at 37 weeks (once again, due to the complications of my oldest) and was 7lbs11ozs and 21 inches long- they told us she would have been a 9-10lb baby if she was born term.

I had each baby at 23, 25 and 27 years, I’m 30 now so I have spent almost my full adult life being called “mommy.”

I read all the books, blogs and joined all the support forums I could find. What to Expect was my bible through my first pregnancy and through her early years but nothing could prepare me for the almost 9 months of hell I was in for after having my baby.

When I was 22 and newly married, I found out I was pregnant. I was young, naive and even though I knew it was a huge sacrifice, I had a glorified image of pregnancy and motherhood. I knew it wouldn’t be a walk in the park and that I wouldn’t have near the freedom I had before but I still imagined taking the baby to baby and me classes, taking her out in cute little outfits with friends (since most of mine, at that time were also pregnant or new mommies) and late night cuddles. I thought of play dates and hanging out with friends would simply end up taking place at kid friendly places instead of bars. I had no idea what the dark side of pregnancy involved. I had heard of conditions like Pre-Eclampsia but the thought never crossed my mind that it could happen to me.

I decided to sit down and ask myself what 30 year old me wished 23, 25 and even 27 year old me knew. I was able to come up with a quick list of six major things I wish people had told me

  1. Take folic acid- lots of it. I didn’t realize how important it really was. I did make sure my pre-natals had it, but that was it. After dealing with Pre-E and losing another baby to Anencephaly, I joined a support group for people who lost babies to the disorder and that was when I read about folic acid and how vital it is to healthy pregnancies. I also learned about the MTHFR and after asking for a simple blood test, I found out I had a more severe form of the lesser mutation- which means my body only processes about 7% of the folic acid I eat.
  2. Swelling all over to the point where you do not look human IS NOT NORMAL. Don’t call Labor and delivery, go in to the ER to get checked- especially if swelling in the hands and face comes with headache and lightheaded or any other sign of high blood pressure. Pre-Eclampsia is serious, but can be managed if it’s caught early on.
  3. Lay off the baby books- especially if you have a preemie- seriously, cut it out. If your baby doesn’t develop by the books (either advanced or behind) they will stress you out more than help- it’s nice to know what “normal” development is, but if you start playing comparisons, it will make you lose your mind.
  4. Go ahead and complain about the morning sickness, crampy feelings, bloated feeling, headaches, mood swings, exhaustion and everything else- being pregnant sucks and it’s ok to not enjoy the symptoms- it’s the end result we all want.
  5. Do not freak out after being given the epidural. It doesn’t make all feeling go away- just the pain. With my first c section, they had to put me under as soon as she was out. I thought it was about to wear off in the middle of the c section. I always assumed that I would be totally numb and that I wouldn’t even feel the surgeon pull the baby out. My second two c sections went smoother because I knew what to expect.
  6. Enjoy the last little bit of freedom- the sleepless nights do not last long (be a few months, they WILL sleep through the night) but that small window of time in between feels like an eternity- and there will be times you will wake up freaked out in the middle of the night because your baby sighed and you thought they were choking- that is normal.

I wish I could go back in time, knowing what I know now, and possibly fix some of the things I feel I did wrong. Since I can’t change the past, I do try to share these tips when the topics come up. I’ll push the subject of folic acid or full body swelling when I’m talking to a friend who’s newly pregnant or trying to conceive. I have many other lessons I have learned in my 7 years of being mommy, but these stick out the most as the pieces of advice I wish I had listened to most.

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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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I’ve been cheated

I’ve been cheated out of knowing a little person.

Cheated out of seeing that little person grow.

Cheated out of watching that first step, hearing those first words or the first “mommy.”

I never got to celebrate those milestones, first birthday or any birthday.

Never got to dry her eyes after she cried.

Never got to look into those eyes and hear “I love you mommy”

Never will get to teach her how to drive.

Never will see her first day at school.

Never will comfort her first heartbreak.

Never will send her off to college.

No mothers day gifts from her.

Or cards.

Or hugs.

Will this ever get easier? It’s been five years without her. Will this pain go away? We would be signing her up for kindergarten. She would be in preschool. This year is hitting me harder. It’s a milestone and I’m still not ready to say goodbye.

I’m a member of a club. I never signed up for. I want out. I want my membership revoked. I want my cassie back. I want this family whole.

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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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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.