Posted on

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.

Posted on

About 1P36 Deletion- Why Do I Even Have To Know?

              Why Do I Even Know What 1P36 Deletion Syndrome Is?

              I never thought we would be traveling down this path. I had severe Pre-Eclampsia at 28 weeks and had my baby weighing only 1lb 11.5ozs and 13 inches long. She was on a feeding tube, oxygen and heart monitor. She stayed in the NICU almost 9 months. She had Retinopathy of Prematurity (where her retinas were detaching from her eyeball) and required laser eye surgery. She also had five holes in her heart- PDA, ASD and three muscular VSDs. We had to have two of the holes (PDA and ASD) closed, luckily they were able to close them through a catherization instead of open heart. She also had feeding troubles after being on oxygen for so long, so the last of her surgeries was getting a g-tube placed in her stomach.

              She came home at eight and a half months old still on a nasal cannula and heart monitor that beeped every time she kicked her feet. She also still had the development of a newborn since she had been lying in a crib most of her life. For the first few months of having her home, we had a home nurse come to the house daily to help us out. I was testing the day time nurses to see if I could seek employment again whhile they took care of her during the day. The first outing we had as a family resulted in her getting a cold. A simple cold shouldn’t be that bad, right? It wasn’t RSV or anything more than a simple cold- and it landed her back in the PICU and on life support so I knew we couldn’t place her in day care, the nursing fell through and I had to cancel it so I decided to stay home with her instead.

              We were nervous for the first few months of taking her out of her crib too long, so we would keep her in the crib except during play time and feedings, baths and spending some time with her. I regret that to this day, but if her cannula came out of her nose for any length of time, she’d start turning blue. We finally figured out how to place her main oxygen tank so it could stretch all through the house and we were able to take her downstairs to be with us during the day, luckily that didn’t last long and around 15 months, she finally had strong enough lungs to get rid of the tube. By that time, she was finally starting to be able to lift her head and crawl during belly time. By three, she started walking without assistance but by that time, we had a misdiagnosis of Cerebral Palsy and she had started Pre-K. She had finished early intervention (birth to three in this state) and she loved Pre-School. Her first year, she didn’t talk and had to be carried. By the end of the year, she was walking holding the teacher’s hand and starting to say words. By four, she was walking on her own, by five she was walking and doing more talking. She started Kindergarten and entered a special class with an IEP. She had a tablet device to help her communicate. Now at seven, they’re putting her in second grade. She’s able to jump about an inch off the ground, walk up and down stairs, run slowly and speak in sentences (short sentences), her hole have fully closed up and she has a normal heart now. She still can’t write but she can read and is starting to be able to do basic math, she understands more than she’s able to communicate back to us.

So, what is 1P36 Deletion Syndrome?

              The first chromosome is the largest chromosome. It may be the most important to development. It is separated into two parts (1P and 1Q) 1P is the shorter arm and 1Q is the longer arm. The whole chromosome contains about 249 million DNA base pairs. 1P36 Deletion syndrome is when a part of DNA is deleted from the 1P arm at the 36 base. My daughter’s particular is 1P36.12-1P36.22. Different areas cause different symptoms but the syndrome has some common symptoms-

1. Low muscle tone (hypotonia)

2. Seizures

3. Growth and feeding issues

4. Developmental delays

5. Birth defects like cleft lip, pallet, heart defects or brain defects

6. Cardiomyopathy (enlarged heart)

7. Hearing loss

8. Vision problems

9. Thyroid problems (mainly hypo but this condition seems to put them at higher risk)

10. Behavior problems (self harm, throwing objects, hitting, melt downs, screaming etc)

              Those are the more common problems. There are some that are more rare- early puberty, undecended testes in boys at birth, scoliosis, neuroblastoma (extremely rare)

              Some of the other random common yet uncommon symptoms include shaking while excited and biting on their hands. My daughter has chew marks all over her hands, we try giving her chewies to use instead but she still has litte blisters. I thought it was anxiety for a long time, but learned it’s a symptom of the 1P36 Deletion Syndrome.

How common is 1P36 Deletion Syndrome and how does it happen?

It’s rare, but one of the more common genetic disorders. It affects 1 in 5-10,000. It’s not completely known how many since there are a lot of kids who go undiagnosed.

It can be passed down but it’s more common to be a random occurrence with no family history.

When it is genetic, the parents usually have what is called a balanced translocation. A balanced translocation is when part of the gene didn’t attach in the proper location and connected to a different gene. Since the gene is there, the carrier shows no symptoms and doesn’t have the syndrome- but they have a 50% chance of any offspring inheriting the deletion.

What’s the prognosis?

              Most children with 1P live into adulthood and with symptoms controlled, can live average lifespans. Some of the complications can take their lives early, but the prognosis isn’t bad. Our geneticist told us our daughter has a 50/50 chance of needing a care taker or living a normal life. There isn’t enough known yet as to the full severity.

              Our case isn’t as extreme as some of the cases I have run across in the forums and support groups I have joined, but it’s not the least extreme. She speaks in basic sentences and her speech seems to improve as her (normal developing) two year old sister’s does. She is fully potty trained, including at night but she has trouble tolerating loud noises and while her gross motor skills are improving, her fine motor still need to catch up. We lucked out and the majority of her problems seem to be physical,(not mental) she developed no brain bleeds or defects and doesn’t have seizures. She did have the heart defects, but they were easily fixable and she speaks more than a few words now. No two cases of any disorder will be the same. There are online support websites available, a yearly conference that is held in late July or early August. The conference for 2018 is from July 26-28 in Houston, Texas.

              The major website is http://www.1p36dsa.org. They have resources, information about the disorder, information for families a store and opportunities to get involved in spreading awareness or just making donations. They are a nonprofit dedicated to education and awareness.

Posted on

I never thought a bowel movement would excite me

I was always beyond disgusted about the whole concept. I still can’t say p**p without gagging but my 7 year old was born and we began a battle around a year with constipation. She’ll get so backed up at times, she has been hospitalized. There are times she’ll be so constipated, she’ll cry while doing it. Now, even though we do have medication help (Miralax), she is able to without the tears- and she’s now going on her own without prompting. That itself seems to be an accomplishment since I’ve seen quite a few kids with her condition who aren’t potty trained at all.

My youngest is the opposite, any animal cheese or milk and she’ll have diarrhea. We are finally getting the hang of her (more expensive) diet, and it’s paying off.  She’ is now having more solid and less runny blow outs.

 

If you had told me when I was 20 that in 10 years, I would be monitoring and discussing poop with anyone (doctors etc), I’d have said you were out of your mind. I guess having kids changes things. I still almost puke when I smell vomit, but I can clean it up and deal with (kids) puking on me. I also can change a diaper (lost a job because I couldn’t change diapers- well, wouldn’t) and my oldest was my first diaper changing experience (and how I learned that boys aren’t the only ones who can pee straight up in the air…)

 

Posted on

Rules of my home

No matter how old you are or who you are, nobody is to lick the cat

There will be no throwing of chairs or any other objects at the cat

The cat is to be pet on demand and fed every time someone goes into the kitchen. The cat food is FOR the cat, it is not meant for human consumption.

No licking windows

No licking walls

No licking anything

These are the rules for all whom enter my home, no exceptions- even the tiny people who live here.

I never thought I would have those rules until I had kids… I never even thought I would have to say “dont lick the cat.”

Posted on

A few things 30 year old me wishes 22 year old newly pregnant me had known.

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 was asked the question “What would 30 year old me go back and tell newly pregnant 22 year old me?” so here are a few pieces of advice I wish I had listened to or received when I was pregnant, especially when I was pregnant with my two older.

  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 lightheadedness 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.
  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.

As of right now, those first three pieces of advice are the most important things I wish I had known. I know I could never know, but I feel that if I had known to start taking folic acid before we started trying, our middle daughter would be here with us- about to turn 5.

After my kids were born, there are things I wish I had known.

1. My social life would die. I always had an active social life from college on out- but between location differences between my friends, weeding out the bad influences and age differences between our kids, I have lost touch with most of my old friends. Lack of time tends to get in the way of meeting new people in similar situations (although, working moms with working husbands and busy schedules may not be the types I’d want to meet when it comes to play dates and getting kids together). It’s not bad losing social life- If your old friends were bad influences (into drinking/drugs/etc) but it does rub off on your kids as they get older and have a lower interest in being around other kids.

2. Don’t let your kid sleep in your bed with you. Even just one night. Our 7 year old fell out of her big girl bed two times in one night when she was 3. We allowed her to sleep with us that night. She’s now 7 and we still can’t get her out of our bed (we could, but she actually panics at the thought of sleeping alone). We know she’s spoiled, but fear and anxiety is real and is a real problem when part of a child’s special needs is that they have trouble communicating with others.

3. Having special needs kids changes how you interact with all areas of your life. I’d love to take her to parties and to movies- and sometimes she does great. Other times, we will spend the full night in the bathroom with me trying to calm her down. We do not know how she will react to any given social interaction and sensory overload is a real problem. It has taken me 30 years to know and handle my own issues (loud noises- mainly, loud crowds, she has the same)

I recently read about one business starting a sensory sensitive day and I’m going to have to try taking her. I want to get her around more “normal” developing children, but other special needs kids tend to get on well with her- either way, she’s starting to take interest in socializing so we need to nurture it.

 

I may create a continuation of this post when I think of more. I know there are probably a lot of things that have slipped my mind. What are some things you wish you had known when you were newly pregnant?

 

Posted on

Things I have learned over the years after three pregnancies

My daughter is seven years old. Just started second grade and these past seven years have changed me so much.

I never thought I’d be associated with stuff like Pinterest nor Starbucks lol

I never thought I’d be like my mom. She was an absolutely great mom and I’m so glad she adopted me (My biological is also great) but I never could see myself being the “uptight” type- now I am seen as uptight and Matt and I are treated like the parents around people our own age.

I’ve learned about kids, life, marriage and everything else and also have promised myself I’ll not talk about my pregnancy experience with newly expectant first time moms. I am the worst case scenario in 2 of three pregnancies.

Sitting down, I came up with a list of some of the things I have learned over the past (technically 8) years and three pregnancies-

1. Never use a book like “what to expect” as your pregnancy or baby-rearing bible. Not every baby will hit all the same milestones at the same time and nowhere near all babies are by the book.

2. If people are telling you to go to labor and delivery because your body swelling up is not normal, listen. Feet and legs swell, put your feet up and consult your doctor if the swelling gets too bad, however always to straight to the doctor or ER if your hands and face puff out- seriously, it’s a sign of pre-eclampsia and should not be ignored.

3. “It happens to other people, it doesn’t happen to me” is not a good way to look at things. It can push you into denial and lead to symptoms being ignored, that’s how I felt when it came to both pregnancy complications and special needs kids and it didn’t help either situation.

4. Always make time for yourself. Daily. Having just a few minutes to relax daily helps you find your center and ground yourself. I always use the time after the kids go to bed to fully relax.

5. You don’t have to listen to all the advice random people (strangers or friends or blogs) give you but do listen to your doctor. Just because someone did something while pregnant, doesn’t mean it will help or will be safe so it’s always best to go by your doctor’s guidance.

6. Always make time for yourself- you will need it and your kids will need you to have it

7. Your spouse needs to be 100% with you- equal partners. It doesn’t matter if one or both of y’all are employed. They need you on their team and vice versa.

8. Don’t feel guilty for putting yourself first once in a while- you need to come first at some time.

9. It’s ok to allow the kids to play alone. You don’t have to be up in their face 24/7.

10. Making them get themselves to sleep helps them learn to self soothe- otherwise you may end up with a 7 year old who clings to you in your sleep.

11. There is no such thing as toddler proof- you may think it’s secure, but it’s not. It may be adult proof, but if it exists, a toddler can easily open it.

12. You are NOT raising kids- you’re raising future adults

13. I should not be trying to come up with lists when I’m tired and just worked a long day.

 

There’s so much more, but that will be in a later post.