Sunday, June 10, 2012

Survivor Saturday: Jamie's Story

I'm a day late posting this, but I did run 8 miles in honor of Jamie and her children yesterday. Jamie's story shows how important it is to trust our instincts, and that high risk pregnancies should be handled by specialists. (I have a post planned for this week exploring that issue further.)

Jamie's Story

After about 1 ½ years of marriage my husband and I decided we were ready to have a baby.  We were pregnant in no time and aside from the nausea and constant vomiting, I had a perfectly normal pregnancy until about 37 weeks.  I thought I was going into labor and so I headed to labor and delivery to be checked out.  I was not in labor, but my blood pressure was so high so I was kept overnight.  I was sent home the next day on bedrest but went into labor that night and delivered a healthy 6 lb, 9 oz baby girl.  We named her Carly.  I was on the dreaded magnesium drip for 12 hours and then they turned it off.  I was sent home without any instructions regarding what could happen after delivery... or that this same scenario could repeat itself in my next pregnancy.

Fast forward about 2 ½ years and we decided we were ready to give Carly a sibling.  After a year of trying we were finally pregnant again.  We live in a very small town and it is common here for people to use their family practice doctor as their OB.  Since things had gone ok the first time I had no reason to believe things wouldn’t go the same way the second time.  So off I went, back to my family practice doctor.  Things were fairly routine again up until about 23 weeks.  I was at work and started having contractions.  I was very unconcerned at first and decided I just needed to drink some water and rest.  I did but the contractions did not stop.  I am an RN and worked at a hospital in a larger town about an hour away.  It is important that I am a nurse because even with that education and experience I had no idea what could happen.  I think we spent less than 30 minutes covering PE in nursing school and I worked in adult ICU and so we never deal with the women’s health side.  In hindsight, I so wish I would have gone to labor and delivery where I worked instead of driving the hour home to go to the smaller hospital. 

Oh hindsight is so very 20/20.  Anyway, I drove home and went to L&D.  At that time they did a fetal fibronectin test and noticed my pressures were a bit elevated.  I was not seen by my doctor that day because he was not on call.  The on call told me to go home on bedrest until the following Monday and then to follow up with my doctor for the test results.  I did just as I was told.  When I got to that appointment, my blood pressure was 140/90 so I was sent over to the hospital for an NST and then told to start a 24 hour urine when I got home.  When I got to the hospital my blood pressure just kept going up.  I think it was 160/110 at its highest.  I was admitted.  I was 24 weeks at that time.  Luckily, my blood pressure stabilized but I was told that my baby and I were both sick and that I would likely be Care Flighted to a larger facility with a NICU.  Instead, because my pressure had not spiked again on bedrest, I was sent home with a PE diagnosis and told to stay on strict bedrest. 

I was scheduled for twice weekly NSTs and office visits.  Each time I would go in for an NST my pressure would be sky high again, usually I’d be admitted and then sent home the next day.  I think this repeated itself and then on the 5th admission I was told I would not be leaving until I delivered- whenever that would be.  I was somewhere between 31-32 weeks.  I developed gestational diabetes as well during this pregnancy and was taking insulin three times a day- the diabetes turned out to be a blessing later on because it had helped the baby to grow bigger than she otherwise would have been.  I had daily NSTs, daily urine dips, weekly 24 hour urines, weekly growth scans, and weekly biophysical profiles.  I kept asking to please be delivered but the doctor kept telling me the baby was “just too small.”  Looking back and now having more understanding- being so small was every reason I should have been delivered. 

Anyway, at 38 weeks, after 7 weeks of being in the hospital, the doctor finally agreed to deliver me IF an amnio proved the baby’s lungs were mature.  That decision was made on a Saturday and the amnio was to be done on the following Monday.  Monday morning came and they went to do the amnio and found that the baby’s fluid was virtually non-existent.  They did not do the amnio and instead my induction was started 15 minutes later.  I still believe that amnio saved my daughter’s life because if there had not been an amnio which showed the low fluid then my next ultrasound would not have been until Friday which I fear may have been too late.  My labor was short and within about 3 hours I delivered a tiny 5 lb 15 oz baby girl. 

We named her Anna.  She had a very weak cry and a very thin cord but otherwise she seemed fine.  I was started on a mag drip again and so the next 24 hours are very fuzzy.  I do remember her having some grunting but was told over and over that she was fine.  We were discharged home 2 days later and again I was not given any information about what could happen in the post partum period.  Luckily during this pregnancy I found the Preeclampsia Foundation and so I knew.  My blood pressure got far worse in the 6 weeks after birth than they ever were during the pregnancy.  I was trialed on many medicines and I remain on lisinopril to this day.  My blood pressure has not ever gone back to normal.

Due to my bedrest and not being able to work plus the mounting medical bills, we were financially devastated.  Aside from trying to dig out from under that debt I thought the PE nightmare was over.  Anna stayed very small and would not eat much.  Even at about 3 months she was only taking 2 ounces of formula at a time.  She vomited a lot also.  The same doctor who had delivered her and who was our family doctor finally grew concerned enough that he sent us to pediatric GI specialist.  We expected to go and be told we needed to concentrate her formula more and get something for her horrible projectile vomiting and reflux.  My husband and I loaded Anna up and headed off to the appointment.  We stopped and had lunch and the mood was so light.  We finally got in to see the doctor and at that moment our lives were forever changed.  He told us that he believed she had milk allergy and reflux and yes, she was tiny, but that he felt we had a much bigger problem.  He felt like she had a neurological problem, likely cerebral palsy, and that we needed to get in to see a neurologist as soon as possible. 

We left that appointment and drove home in complete silence.  It took about a month to get in with the neurologist who confirmed the diagnosis.  They feel her brain injury was suffered in utero from a lack of oxygen caused by a failing placenta.  Her asymmetrical IUGR was proof of that.  We immediately got her started in therapy and since that time have been to hell and back.  She has had to endure countless specialists, appointments, a feeding tube, seizures, leg braces, medications…  You name it and we’ve probably done it.  She is an amazing child though and to look at her you would never know what all she has been through.  The thing that is so hard is that her brain injury was preventable.  Had my doctor not been so arrogant in thinking he could handle our case, her brain likely would have been spared.  We should have been sent to an MFM or an OB at the very least.  I have since found forgiveness for that doctor because the anger was making me crazy.  I did not forgive for his sake, but for the sake of myself and my family.  I firmly believe he did the best he knew how to do but sometimes doctors should admit they are in over their heads and ask for help.  It wasn’t until I obtained all of our hospital records that I really realized how differently things should have gone.

Fast forward 3 more years and I became unexpectedly pregnant again.  I found the best OB around who specializes in high risk pregnancies.  He knew from the start that this pregnancy was going to be a balancing act and he was prepared for the job.  He also understood how emotional this 9 months was going to be.  I started bedrest at 20 weeks.  I was on medication from the start and it was changed a few times.  I had no idea how hard a pregnancy would be following a pregnancy that had gone wrong.  The emotional toll was indescribable.  But we made it successfully to 34 weeks when my pressures became unmanageable and I was induced.  I delivered a 5 lb 13 oz little boy named Gabriel “Gabe”.  He spent 18 days in the NICU before coming home.  He is thriving and has healed a lot of the wounds that were so deep after my last pregnancy.  For me, it was far easier to have a baby in the NICU that I knew was doing ok than to carry one inside of me that I could not see.  I spent every day up until that day of delivery wondering if this baby’s brain would be ok and there was no test that could tell me the answer.

I was advised to never get pregnant again.  I will listen to the doctors.  I have learned to trust doctors again, but I have also learned to trust myself.  I have learned to go with my gut instinct- the one that kept saying “get Anna delivered”, the one that I ignored.  It has been a long road but one that has made me a better person.  For us, the PE nightmare will never be over because the damage done to Anna’s brain cannot be undone.  But we will go on and we will do our part to make sure this never happens to anyone else.  All of my children are alive and so am I and because of that we are some of the lucky ones.

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