My Children & Pregnancy Loss Story

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My Personal Journey into Children and Pregnancy Loss

WARNING!  The beginning of this story shares the joy of the birth of my three living children.

The second section shares the detail losses and feelings I experienced with 5 miscarriages.

That section may be difficult for some to read.

This is an extremely long page covering 23 years.  It is probably the longest and most difficult page/post I will ever write or share.

 

I promised the EDS Pregnancy/Infant Loss Group I would share my story today.   I have put it off  knowing it would be difficult and trying to decide how much to share.

Most of my family and friends have no idea how much loss we have endured over the past eight years, but please, let me begin at the beginning.

My living children

I spent my teen/early life only experiencing one cycle every few months and it was a killer.  It left me unable to move, go to school or function.  At age 19 I went to the doctor and was diagnosed with “abnormal cells” Stage 4.  This was caused by the fact my body was not performing as it should and I was told it would probably continue to happen over and over and over.   Cryo-surgery was performed and my Dr. at the time told me I would probably, never conceive and if I did would never carry to term.

This was devastating to me but I knew that doctors had been wrong before and tried to hold on to that.

The only thing I ever really wanted in life was to be a mother, even as a little girl I was a mother hen.  At church I would work in the nursery, babysit, help in Sunday School or help Moms that were overwhelmed.   I could handle 15 kids and not bat an eye.  I loved children and always knew I would have plenty.

Fast forward three years.

I was married and decided I was ready to begin a family….well, that took a little longer than I hoped but with lots of prayer, and patience…still only having one cycle a year.  I got pregnant!  No one believed me, however.  I went to my family physician and my ob/gyn, multiple times because I spent all day, everyday, violently ill.   They did multiple blood test and not an ounce of HCG showed up.  Not one!  I received provera (very dangerous for pregnant women), high dosage shots to control the vomiting and medication because it was to the point I spent all day in the doctor’s office while he monitored me.   I finally became fed up and called another family doctor that delivered babies and he scheduled me for an ultrasound.  I was 14 weeks pregnant with a beautiful healthy baby.   After the first 5 months ended the pregnancy went fairly smoothly (besides the usual stuff).  In November 1996, with NO drugs but a lot of huffing and puffing I delivered a beautiful 7lb 9oz baby girl.   I had some nasty complications after (due to stubbornness, I thought but later found was probably EDS related)  (Due to the nature of those complications I will leave them out but feel free to message me if you are wondering about EDS pregnancy and would like to know….I  will not share those comments)

When my baby girl turned one I decided it was time to try again (after all my doctor told me I couldn’t do this and I thought I should try early if I was going to try at all).  In February 1998  I was sure I was pregnant (but hey, with one cycle a year who can tell, right?).  I went to the doctor and was told NO! your aren’t.   Uh, ok…. A few days later my cycle (or at least what I thought was) came.  I decided the doctor was right and I was mistaken.  WRONG AGAIN!  In March I was very definitely pregnant, and my family doctor who delivered my daughter thought it might be twins and referred me elsewhere as high risk.  I returned to my original OB/Gyn  The one who told me I would never have children, and that I wasn’t pregnant both times.  He began monitoring me very closely, we had a sonogram at almost every visit.  Each sonogram took forever as he looked for the 2nd baby.  (He, of course,  didn’t share this info until much later).    He did tell me that my baby was breach, we had placenta previa and the pregnancy was considered high risk.

As the pregnancy continued, I would suddenly have sever bouts of diarrehea and weak spells, otherwise the pregnancy was fine.  It was going well but I did have to be hospitalized overnight a few times to have my fluid take increased and my labor stopped.  The labor was caused by dehydration but the more I drank the more I became dehydrated so we didn’t understand. (More on that later.)  My wonderful baby boy laid on my sciatic nerve the ENTIRE pregnancy which means I would be walking along and then BAM! my legs would give out because my sweet, charming, little man moved or kicked.   I didn’t care I was just happy to have a healthy baby.   Because of this back pain however I did not realize I was in labor.  I just hurt!   The day of delivery we went to the doctor for my weekly check up and he told me I would be meeting my son soon but would need a c-section and to return as soon as I was in labor because our baby was breech and the placenta was still in the way.   (We were not due for 3 more weeks.)  That afternoon my husband (at the time) and my mother drove me home from the doctor (1 hour) and immediately loaded me back in the car and took me back to the hospital (apparently the fact I could not stand up straight made them concerned).  Of course, it was another hour back to the  hospital as I argued that I just had a backache and it was too early for the baby.  And then…………………My son chose to do a full 180 degree turn while still in my stomach (of course, I didnt know this, I thought someone had decided to remove my insides by ripping them out in 30 seconds or less).  My of poor momma, she was exiting the ramp from the interstate when I let out a war hoot like you wouldn’t believe (I was almost always silent besides the arguing the rest of the time.)  O M G, after months of excruciating back pain I could finally move and breathe and it was GREAT!  And then came the hospital…I was great!  I wanted to go home and clean house, prep for my upcoming baby, do things I hadn’t done in months.  Nope, that wasn’t gonna happen.  I was dilated to four, the baby had turned and the doctor he said was he was coming.  One problem, my baby boy missed that memo!  My labor stopped, I felt great and was roaming the halls when my doctor sentenced me to bed and a pitocin drip to restart my labor.  Several hours and a few pushes later my 7lb 11oz premature baby boy was here!  He had jaundice and the cord around his neck but was in perfect health otherwise.  And I could breathe!  YAY!

He had some health issues with asthma and pneumonia that were triggered by outside forces but was otherwise pretty healthy as an infant.  Just  like my daughter he didn’t digest formula well which  I didn’t think much of as I was breastfeeding anyway.

I decided that was enough children for awhile and didn’t expect to have anymore with a baby and toddler running around but God had others plans.  While, I was nursing my son, still not having a cycle and should not be getting pregnant.  Guess what my birthday present was?   Morning sickness and a confirmation from the doc that I was indeed pregnant.  No confusion in the bloodwork whatsoever this time!  So, yep here the woman who was NEVER supposed to have children was pregnant again , with her third child BEFORE her son was a year-old.  My family was not exactly thrilled.  I mean yes, we all love babies but it was suggested I not have any more or at least wait a few years, in addition to that we were having some family and financial stability issues but there I was pregnant and my son not a year old deathly sick with recurring pneumonia and a reaction to his medications.  In order to help my son I had to continue breastfeeding while pregnant for the first few months as it was the only way we could keep nutrition down.

Our surprise.…This pregnancy was extremely hard on me.  Lil’ miss dropped at 6 months and I had to walk around her head.  Keep in mind I had a 3 year-old, one year old and was 6 months pregnant.  Waddling was more like it.  After she dropped I began having contractions (not braxton hicks) regularly.  Meaning like EVERY OTHER DAY!  It got to the point my doc would come in say…”oh, its you”.  Check my chart and say “the usual”  Meaning bedrest and fluids.  Once again the more I drank the more I became dehydrated.  The more dehydrated, the more early labor.   I was not a good patient.  Due to the situation at home and the fact I lived quite a drive from any family I refused to stay in the hospital.  My kids and I developed a system at home, my grandparents gave me a jumbo recliner and I would sit in it with a kid on each side or they would play in the living room.  The pre-term labor never did stop but I did carry my daughter to term because doc would not let her come.  She was 9lbs 6 oz and healthy as a horse.  I, on the other hand, was worn out but felt otherwise fine.   Doc told me NO MORE KIDS or it might kill me.  I began birth control but had nasty complications and after a few years had to stop.  (once again for details on that message me and I will be more than willing to share privately).

Sidenote:  We discovered after my pregnancies that my dehydration was actually caused by the water I was drinking.  Even now I need to drink only certain bottled water to prevent dehydration and severe diarrehea.   NO fountain, city or well water allowed.

 

My angel babies (5)

Fast forward five or more years.  I got remarried and as much as I wanted more children we decided it would be best not to have any.  I began using birth control again and with it came more complications.  I stopped.  I became pregnant and quietly survived my first (for sure) miscarriage during my husband’s grandmother’s funeral in another state.  I had never had one and wasn’t sure that was what going on and just went about surviving the pain/discomfort and trip.

After a few months I restarted with a different type birth control.  And guess what?  I became pregnant but it took awhile for me to realize it as this is also when my children were experiencing the complications of undiagnosed EDS in force.  I also spotted the entire time.  After a few weeks I realized it was not the stress but I was indeed pregnant (with Baby M.) and made an appointment to be checked at the doc.  She sent me for an internal ultrasound and everything looked fine.  It was the night we were to leave for my brother-in-laws wedding (what is it with me and in-law events?) so we had the ultrasound, got an expected due date. got in the car and drove hours to the wedding.  I spent the next day quietly praying my baby would be okay and trying to rest as much as possible while on a trip with 20 other people and a planned event schedule.  We, of course, did not tell my in-laws because it was my brother-in-law’s weekend.  I had already quit my job because of my kids appointments so that wasn’t a problem.  I still had complications and decided not to tell others yet because my brother-in-law’s reception was the next weekend.  So we waited it out.  I scheduled an appointment with a new ob and had my first visit.  She assured me everything thing was fine and bleeding in early pregnancy was perfectly normal even though I was now 37 years old.   Due to cramping and bleeding I returned to the ER and was told everything was fine to just rest.  (Yeah right, I am moving into a new house, my emotionally unstable sister had moved in, my youngest was diagnosed with EDS, possible JRA, heart and lung problems, relax? ok).

At the 12 week appointment we could hear the heartbeat on the doppler and it was strong.  We decided to tell our families.  Just as we made that decision my brother-in-law called to tell us they were expecting.  We told him but chose to wait to tell the in-laws until a little later so as not to rain on his parade.  A week or so later we did them and others.  I mean at 12 weeks “gestation” your chances of miscarriage are next to none, right?

At 16-17 weeks (right after moving into our home) I began having terrible cramps and NO I did not lift or do anything.  My family, my husband and his family did it all.  I met my husband at the ER and after sitting in the lobby for a few hours I got called back to the ER “room” where the ultrasound technician, viewed my stomach forever but wouldn’t turned on the heartbeat sound (or so I thought), she wouldn’t tell me anything either.  I was terrified AGAIN but I knew all the other times we had been okay and the odds were in our favor.  Then… the ER doctor came.  Some poor young guy who did not want to bear the news.   Our baby had stopped growing at about 12 weeks and 2 days….JUST as we had started to tell everyone.  I had carried her, was sure I felt her movements, sat discussing our plans with others and the entire time she had not been growing.  It was devastating but the doctor said my ob suggested going home and come in on Monday for a D& C if it hadn’t completed “naturally” by then.

What the hell is “naturallly”?  Two of the hardest things I have ever done is call my family and tell my pre-teen and teenage children that the baby they had worked so hard to protect had stopped growing and wouldn’t be coming home with us, ever.  The pain got worse as did the bleeding and being a newbie to this I thought it would be that simple.   I woke up the following Monday and felt like I had the flu so I cancelled the appointment for the D&C, told them I was sure I was done with the “loss” and would follow-up in a few days.   I hung curtains, cleaned and prepped for my in-laws to come to dinner for a concert my kids were holding that night and then I began to get these awful cramps/contractions.  I drove my son to school and snapped at my poor kids a few times, tried a hot bath with my new jet tub and nothing would help.  That’s when I knew I was wrong.   Thankfully, my wonderful husband walked in just as my water broke and all hell broke loose.  My in-laws took my children to the concert and my sister hid in the basement.  I will not go into the details of what occurred but it is not something I will EVER forget.  I became very weak and tried calling my OB she told me what was happening was normal and to call the office in the morning.  My poor husband who has never had a serious injury or illness in his life was beside himself, after cleaning up all the blood and trying to keep me awake.   I passed out anyway and that is when he called an ambulance.  Now, I look back and realized I should have been embarassed but at the time I was too weak to care.  My blood pressure (at the time) had an average blood pressure of 80/50 when agitated it would raised to 90/60.  SO when the poor EMT’s came to get me they  could not find a pulse or get a good BP.  I had to keep telling them that I was alert and was ok, my pulse is always thready.   They transported me to the local hospital (2 blocks away) and began an IV to stabilize me before transporting me to a larger, better equipped hospital.  While in our local hospital, they left the IV disconnected and when the new ambulance crew came in I was losing blood on the floor from my arm as well as still hemorraging.  The new EMTs   remedied that and loaded me up.  All the way to another city the paramedic kept repeating, “I cant find a pulse” and I would reply,  “Hey, as long as I am talking to you I have one.”  I was so mad at him because he ‘let me close my eyes and just sleep (Now, I can understand but then I was just plain aggravated…I figured sleep equalled not thinking about my baby.)

After arriving at the new hospital they stabilized me in the ER with IV’s, blood and other things then transported me to a room to wait for my D & C.  A room where they woke me up every 30 minutes.  A room on the labor and delivery floor where every time they opened the door and sometimes when they didn’t I could hear the newborn babies crying.   Thankfully, that night I was too weak and drugged to care.  I had so many IV’s, blood draws and other tubes that some lab guy came in and asked if i he could take,”just a tiny bit of blood from my fingertip”.  I was like, “yeah, why not?”  He took a vial full.  Ever have anyone squeeze an entire vial of blood from your fingertip?   It took forever and wasn’t exactly comfortable.

Early the next morning they wheeled me down for the D & C.  I remember being asked questions and then nothing until I woke up to more babies crying in my room back on the freaking labor and delivery floor.   Really people?  Could we not at least put the woman who just lost her baby at the far end?   I mean I understand you need to monitor her but just a little thoughtfulness goes a LONG way.  I spent the entire morning/early afternoon crying/sleeping.  I talked to my mom on the phone and tried to be strong.  She was hours away and sick so we had told her not to come.  I spoke to my husband a few times before he came to get me.  He had just begun a great new job (in the same town as the hospital) and we decided he shouldn’t miss work just to stand around in a hospital.

Just a few hours after surgery, more blood, a quick visit by the doc to tell me what had gone wrong and listening to newborns cry I was encouraged to go home.   Only one problem with that.  I could barely walk, I was freezing to death (due to blood loss) and I couldn’t stop crying.  My husband came, helped me dress, use the restroom, sign papers and escort me and my nurse in my wheelchair, down the looong labor and delivery hallway past all these beautiful babies to the elevators.  We went home and I collapsed on the couch still freezing to death.

Did I mention it was December and almost Christmas?  Yeah, Christmas at our house was a little subdued that year.  My family came and celebrated with us the best they could, but what do you say to someone who doesn’t have the strength to walk to the bathroom alone and just lost their baby.

It was more than a little strained, between the blood loss, reality and weakness.   I swear all I did was cry for two weeks and then for months in bed at night.  I felt like I had failed my husband.  Before our marriage he had never wanted children and with this pregnancy he had gotten so excited.  He had plans to race our baby with his brother who was due one month after us but instead of racing babies we got to see my sister-in-law grow rounder and rounder.   No one seem to realize how hard that would be for us.  In April/May my daughters and I were expected to attend the baby shower.  I absolutely could not bring myself to shop for baby items knowing that my baby should have been born about that time and we should be dressing her.  We gave them cash and a book and I have to say I did very well sitting through the shower with other babies and watching the excitement until someone who didn’t know we lost ours ask me about it then I had to leave the table.  It wasn’t my shower and I wasn’t about to ruin it for my sister-in-law.  So I locked myself in the bathroom, had a good sob, got control of myself, cleaned up and went back out to celebrate my new niece/nephew to come.   It wasn’t until hours later that my in-laws (after my girls said something) realized that the shower might be hard for me.

In no way do I blame my niece but there have been times that watching her has broken my heart.  Her first steps, her first smile, her first everything….knowing that my daughter would have been doing all of that, about that time or a little before has been hard.  I make a lot of quick trips to the bathroom or around the corner, I dread family events and cry when I am in bed at night.  Just randomly out of the blue.  I try very hard not to project any hurt onto my niece and play with her whatever chance I get.  Now, she has a little sister who I hold as much as I can and shower with love since we have lost three more since my new nieces birth.

After the loss of  Baby M. my doctor didn’t want to tie my tubes right away.  I cannot take iron and it took over a year for me to regain my strength.  She put me on yet another birth control, I gained 35 pounds in six months and was still too weak so she refused to do surgery until I became stable.  (I was going to get my tubes tied after birth and since there was no birth and my hubby said he wouldn’t risk losing me at the chance to have another baby we decided just to do it.)  Then she moved.   Who wants to find a new ob/gyn?   I simply kept getting my shots at my local primary care provider.

December 2013 (10 months ago) I began having complications with my shot again.  I would have sworn I was pregnant but I couldn’t be I was on the shot, right?   Wrong!  Thankfully I chose not continue the shot and to take a break.  In January I decided to take a pregnancy test.  It was positive!  What the #^***?  I called on a Thursday to find an available ob/gyn and was told to go get blood work to check my numbers.  I did.  I called 8 days later due to spotting and they told me to get more blood work before I even returned home the cramping began and I received the phone call telling me I had a suspected “chemical pregnancy”.  I hadn’t gotten too excited because the idea of getting pregnant on birth control had its own risks but I was still devastated.  If I couldn’t get surgery and I couldn’t manage not to get pregnant on birth control.  What was I going to do?

Roll forward to May 2014.  I was off the pill and looking for someone to do a tubal when you guessed it….We are pregnant!  I took the test on Mother’s Day (right before we headed to my in-laws-yep, again!).  I told my husband.  We had a quiet mini-talk and packed up for my in-laws.  I began spotting within 5 minutes of taking the test and of course was on pins and needles from then on.  First thing Monday morning I contacted a high-risk ob/gyn attached to a neo-natal unit and made an appointment for two weeks away.  Bleeding in pregnancy is normal in some women after all.   The day before I began bleeding heavier and the day of the appointment it was almost cycle strong but I went in for the sonogram and appointment as scheduled.   I am sure the ultrasound tech was confused.  Here I am getting an ultrasound and bawling my eyes out before I ever begin.  By the time we were done both ultra sound techs we crying and I was sobbing.  The baby was the perfect size and had a fantastic heartbeat!!!  I went directly to the doc and he said “Everything is perfect!  I cannot make promises but it looks good to me.”  I was 6 weeks and 5 days.  That night we had both our families over and since I would be on light duty and avoiding any problem situations or activities we chose to tell our parents. (One’s response was…I hope you take better care of this one.—So yes, if you ever want to talk about family and friends not understanding I am here.)  Two days later I could not stand up straight due to the cramping so we went to the ER and discovered Baby A had stopped growing the day before.  I went home and lost him/her the following day.  It was hard but the worrying and wondering was just as hard at least now I wasn’t in limbo, right?  I handled it fairly well throughout the days but more than one night after had me in a ball on the floor of my bedroom in gut wrenching sobs.  What did I do wrong?  How could two single, irresponsible teenagers I know be having their babies and I cant have mine?  Why? Why Why?

I had my follow-up with the new ob/gyn and the test showed no genetic problems, they don’t know why the pregnancy ended, we should try again, it will most likely be fine, etc…. SO you know what?   We decided yes, lets do this…If God wants me to get pregnant on birth control surely He wants me to be pregnant when I am ready.  Doc said to wait one cycle and we did.  I took the nasty vitamins, I ate so healthy I peed green I swear and I waited.  It WORKED we were pregnant!  I called the doc, I gave up soda, I took my vitamins, I slept, I gave up all my activities that involved fumes and lifting, I told people “No, I cant I am trying to keep my baby” and it was great NO bleeding until September 3 and then terror but hey, it was only a drop and it’s common in a lot of women, right?  It wasn’t near as bad as the last two times so we are making progress.  Dr. scheduled me for an 9 week appointment because my living children had other appointments on week 8 and an early miscarriage cannot be prevented, regardless what others may say.   I called, several times about the bleeding and we ordered bloodwork.  My HCG was great, we ordered a follow-up my HCG did not double and my progesterone was low so we decided to try the suppositories.  Three days after the suppositories I had to call due to serious complications.  Doc was serving in the hospital and had me come sit in the ER and be monitored.

The ER doc walks in and says “You look familiar”

I responded with “Yeah, We went through this together last time…”

She said, “You are the one that wont take any medication, aren’t you?   “Yep, that’s me?”   as I am rolled over in a ball on the bed trying to breathe through the cramping/contraction.

“You sure?”  I gave her a look and then my doc showed up and without doing an exam took one look at me and says “I am so sorry.  I don’t understand what happened.”

I stayed for several more hours and began what would be (I believe now) to be the miscarriage of twins-several days apart.  I wont go into details but I left the hospital that evening when we decided I could return if I began to hemorrhage or became any worse.

The next day I returned to life as usual as much as I could.  Running to appointments, chasing kids, and trying not to cry.  I mean after all what does crying do but make EDSers more tired and in pain.  I cried in my car, my bed, my shower, my bedroom floor, garage, any place I could find a place alone.   I honestly felt like I had failed again.

A week later we return to the doc for what should have been the ultrasound of our babies and their first heartbeat but instead t0 make sure the miscarriage had completed properly.  My husband had taken the day off for the original sonogram so he went ahead and came along.   First thing doc says is “I don’t know what happened.  I am going to refer you to MFM.”   And he kept insisting that there was nothing I did or could have done to cause or prevent this miscarriage or any of the others.  He asked questions and said he hadn’t found anything in the medical books about EDS causing miscarriages this early in type 3 patients BUT smart man that he is, he suggested I ask around in my support groups because “It can take years for information to be published” and my group would have first hand experience.  He also asked if we wanted to try again.  I looked at my husband and for once he answered with a very positive yes.  (If you knew him you would know that I tease him that I wasn’t sure he could say “I do” at our wedding because he isn’t real verbal or decisive.  He is the most wonderful man in the world, though.)

I had to laugh at the doctor though when he stated; “I think you would have no problem getting pregnant again if you tried.”   Really doc?  My response was “Getting pregnant isn’t the issue…staying that way is!”    He suggested trying right away after my first cycle and while we waited to hear from MFM.

So here we are in limbo.

Do I really want to torture myself and risk heartache again?  Do I want to risk having another EDS baby, my girls already struggle so?   Is 41 too old to keep trying?  Will my body hold up?  And a million other questions.

And that is where we are right now in the baby journey….

This page is a lot longer than I anticipated and maybe no one will read it but it is here for those who can and maybe it will help someone.  We added it as a page so that those who are sensitive will not be exposed until they are ready.  If you know someone who would benefit from this page or is doing research my story my help with please feel free to share it.  I will begin posting updates about our new journey inside the blog so if you would like to follow along feel free to sign up for email notifications or click “like” on the right hand side of your page.  We encourage both.  The email will notify you of each blog post but Facebook will have more informational links, stories, daily updates and fun stuff (however, facebook is funny about what it shares and if you don’t “like” our posts on a regular basis will not make them a priority in your feed.)  So sign-up for both and if you see too much of us you can unsign-up.

If you have read this and need support or would like to talk please message me at [email protected] OR if you have any ideas from experience as to what might help please let us know.   I do belong to a few on-line support groups one specifically for EDSers who have suffered pregnancy/infant loss and would be happy to add you to those closed groups, but once again, please contact me at [email protected] for that information.

If you would like to leave a comment of encouragement or public question below just type in the comment box and I will respond and share with our readers.   If you would like to leave a private comment please mark it private and I WILL NOT share it.

Thank you for reading and I hope by doing so you were helped in some small way.

The pain never leaves nor does our love but our lives do keep moving.

 

 

 

 

 



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