The Lucky Ones
Posted On Monday, April 18, 2011 by Jamie
After about 1 Â½ years of marriage my husband and I decided we were ready to have a baby. Â We were pregnant in no time and aside from the nausea and constant vomiting, I had a perfectly normal pregnancy until about 37 weeks. Â I thought I was going into labor and so I headed to labor and delivery to be checked out. Â I was not in labor, but my blood pressure was soÂ high so I was kept overnight. Â 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. Â We named her Carly. Â I was on the dreaded magnesium drip for 12 hours and then they turned it off. Â 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 Â½ years and we decided we were ready to give Carly a sibling. Â After a year of trying we were finally pregnant again. Â We live in a very small town and it is common here for people to use their family practice doctor as their OB. Â Since things had gone ok the first time I had no reason to believe things wouldnâ€™t go the same way the second time. Â So off I went, back to my family practice doctor. Â Things were fairly routine again up until about 23 weeks. Â I was at work and started having contractions. Â I was very unconcerned at first and decided I just needed to drink some water and rest. Â I did but the contractions did not stop. Â I am an RN and worked at a hospital in a larger town about an hour away. Â It is important that I am a nurse because even with that education and experience I had no idea what could happen. Â 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 womenâ€™s health side. Â 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. Â
Oh hindsight is so very 20/20. Â Anyway, I drove home and went to L&D. Â At that time they did a fetal fibronectin test and noticed my pressures were a bit elevated. Â I was not seen by my doctor that day because he was not on call. Â 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. Â I did just as I was told. Â 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. Â When I got to the hospital my blood pressure just kept going up. Â I think it was 160/110 at its highest. Â I was admitted. Â I was 24 weeks at that time. Â 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. Â 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. Â I was scheduled for twice weekly NSTs and office visits. Â Each time I would go in for an NST my pressure would be sky high again, usually Iâ€™d be admitted and then sent home the next day. Â 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. Â I was somewhere between 31-32 weeks. Â 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. Â I had daily NSTs, daily urine dips, weekly 24 hour urines, weekly growth scans, and weekly biophysical profiles. Â I kept asking to please be delivered but the doctor kept telling me the baby was â€œjust too small.â€ Â Looking back and now having more understanding- being so small was every reason I should have been delivered. Â Anyway, at 38 weeks, after 7 weeks of being in the hospital, the doctor finally agreed to deliver me IF an amnio proved the babyâ€™s lungs were mature. Â That decision was made on a Saturday and the amnio was to be done on the following Monday. Â Monday morning came and they went to do the amnio and found that the babyâ€™s fluid was virtually non-existent. Â They did not do the amnio and instead my induction was started 15 minutes later. Â I still believe that amnio saved my daughterâ€™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. Â My labor was short and within about 3 hours I delivered a tiny 5 lb 15 oz baby girl. Â
We named her Anna. Â She had a very weak cry and a very thin cord but otherwise she seemed fine. Â I was started on a mag drip again and so the next 24 hours are very fuzzy. Â I do remember her having some grunting but was told over and over that she was fine. Â We were discharged home 2 days later and again I was not given any information about what could happen in the post partum period. Â Luckily during this pregnancy I found the Preeclampsia Foundation and so I knew. Â My blood pressure got far worse in the 6 weeks after birth than they ever were during the pregnancy. Â I was trialed on many medicines and I remain on lisinopril to this day. Â My blood pressure has not ever gone back to normal.Â
Due to my bedrest and not being able to work plus the mounting medical bills, we were financially devastated. Â Aside from trying to dig out from under that debt I thought the PE nightmare was over. Â Anna stayed very small and would not eat much. Â Even at about 3 months she was only taking 2 ounces of formula at a time. Â She vomited a lot also. Â 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. Â We expected to go and be told we needed to concentrate her formula more and get something for her horrible projectile vomiting and reflux. Â My husband and I loaded Anna up and headed off to the appointment. Â We stopped and had lunch and the mood was so light. Â We finally got in to see the doctor and at that moment our lives were forever changed. Â 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. Â 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. Â We left that appointment and drove home in complete silence. Â It took about a month to get in with the neurologist who confirmed the diagnosis. Â They feel her brain injury was suffered in utero from a lack of oxygen caused by a failing placenta. Â Her asymmetrical IUGR was proof of that. Â We immediately got her started in therapy and since that time have been to hell and back. Â She has had to endure countless specialists, appointments, a feeding tube, seizures, leg braces, medicationsâ€¦ Â You name it and weâ€™ve probably done it. Â She is an amazing child though and to look at her you would never know what all she has been through. Â The thing that is so hard is that her brain injury was preventable. Â Had my doctor not been so arrogant in thinking he could handle our case, her brain likely would have been spared. Â We should have been sent to an MFM or an OB at the very least. Â I have since found forgiveness for that doctor because the anger was making me crazy. Â I did not forgive for his sake, but for the sake of myself and my family. Â 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. Â It wasnâ€™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. Â I found the best OB around who specializes in high risk pregnancies. Â He knew from the start that this pregnancy was going to be a balancing act and he was prepared for the job. Â He also understood how emotional this 9 months was going to be. Â I started bedrest at 20 weeks. Â I was on medication from the start and it was changed a few times. Â I had no idea how hard a pregnancy would be following a pregnancy that had gone wrong. Â The emotional toll was indescribable. Â But we made it successfully to 34 weeks when my pressures became unmanageable and I was induced. Â I delivered a 5 lb 13 oz little boy named Gabriel â€œGabeâ€. Â He spent 18 days in the NICU before coming home. Â He is thriving and has healed a lot of the wounds that were so deep after my last pregnancy. Â 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. Â I spent every day up until that day of delivery wondering if this babyâ€™s brain would be ok and there was no test that could tell me the answer.
I was advised to never get pregnant again. Â I will listen to the doctors. Â I have learned to trust doctors again, but I have also learned to trust myself. Â I have learned to go with my gut instinct- the one that kept saying â€œget Anna deliveredâ€, the one that I ignored. Â It has been a long road but one that has made me a better person. Â For us, the PE nightmare will never be over because the damage done to Annaâ€™s brain cannot be undone. Â But we will go on and we will do our part to make sure this never happens to anyone else. Â All of my children are alive and so am I and because of that we are some of the lucky ones.
Posted On Tuesday, May 03, 2011 by Liz
Thank you for sharing your incredible survival story. I had my son at 34 weeks via emergency c section. He spent almost 2 weeks in a Level IV NICU. The first few days we were seperated because the NICU at our hospital could not help him.Â He is a perfect little 19 month old and the neonatologists have said that he is even advanced in some areas. I always wondered what could have been if the doctors had not been so aggressive. I always believed that his life would have been better. I never realized the complications that could result from low fluid and oxygen.Â They never explained that to me and I felt that I was blindly following their directions because I was not educated enough to say otherwise. Now that we are expecting our second child I am excited and apprehensive. But thanks to parents like you and the preeclampsia foundation website I am more educated and prepared. I am sorry that your daughter has to suffer through so many procedures, and that you have to watch her endure all that she does. I will remember you and your family in my prayers and hope that life brings you all nothing but joy in the years to come. God bless you.