written on June 1, 2010...
I write this in hopes that I can someday help someone who experiences the pain and sadness we are feeling after the loss of our daughter, Grace Elaine, shortly after her birth. My thoughts might be very random and in no certain order. My emotions are on such a roller coaster ride. One minute I feel fine ~ the next, I can't stop crying. Today is Day 12 of our loss. Just saying it makes my cry. In 12 more days our 4th child was due.
We decided last July that we wanted to have another baby, Lord willing. My sister and her family visited for a week and while they were here, she announced that they were expecting their 4th child. I was excited for them and congratulated her. After I told my husband, I think we just knew that we wanted another baby, too. So for the next couple of months we had fun trying to make a baby.
We already were blessed with 3 beautiful, healthy daughters. All three pregnancies were uneventful. I had the typical nausea the 1st few months, weight gain anywhere from 25-30 pounds, one ultrasound with each pregnancy, and normal labor and deliveries lasting about 8 hours. All 3 were induced, because I was anywhere from 2 to 10 days overdue with them. We never wanted to know the sex of our babies. We always loved that surprise ~ although I was convinced that our third daughter was a boy. I think that not finding out the sex of our children has played a huge part in naming our 4th daughter.
We found out in October that we were pregnant. My husband was the one that picked up a pregnancy test, and we took it together. I can remember how excited we were. From that day, we began to fantasize about a life with another baby.
I had my first OB appointment in mid-November. With our 2nd and 3rd pregnancies, we had a wonderful doctor while we were living in WI. When we moved to The South, I didn't know who to go to for care. I didn't want to ask any of my friends because I wanted to wait until after our 3rd month to tell everyone. I heard that Dr. M. was good and that is who I chose for my doctor.
My first visit left me frustrated. The nurse took me into the bathroom and said, “Let me get this straight. You're 39 and you're pregnant?” Next, she took me into the exam room and her next question was, “Do you plan on keeping this baby?” Saying this now, knowing the outcome, makes me sad and even angry. My answer to this was, “Yes, I'm even married, and this was a planned pregnancy.” I wanted to walk out of the room at this point. Dr. M seemed nice but kept on pointing out my age and all the risks associated with this pregnancy now. I never heard of AMA (Advanced Maternal Age) until this point. She wanted me to have genetic testing along with other blood tests to see if the baby had any "issues". I refused because the results wouldn't have changed anything for us. God created this baby for us. Dr. M. also was sending me to Nashville for a special ultrasound because of my age. So, from the beginning, I felt as though I was labeled.
With my last pregnancy, I was 36 and my WI doctor had never mentioned anything about my age. He treated me as a healthy patient who had no complications with previous pregnancies. Here, Dr. M. looked at my age and immediately labeled me as high risk. (Today, I do understand the extra precautions and concerns for a woman who is over 35. I also know that the creation of a life is in God's hands, and no matter what a woman's age is, He is in control. At this time, I was still living in my content world of complete oblivion where everything goes according to our plans.)
We shared our news with our family on December 20 when we were in WI. At 18 weeks, on January 12, we had our 1st ultrasound. Our 1st ultrasound tech. couldn't get the baby to settle down to get all of her pictures, so she had another one come in. She didn't have much luck either, but after a long time ~ or what seemed like a long time because of the silence~ she got her pictures and had Dr. M-L come in. She observed for a while, too...in silence. We went into her office and she asked if we knew why we were there. I said that it was because I was old. She seemed to agree then pulled out a chart and started talking about genes and chromosomes. My husband and I listened to this in silence, not even looking at one another, but together we were wondering, “Why is she telling us this?”
She said that she saw subtle signs (she used “subtle” at least 50 times) of fluid sacs on the brain (choroid plexus cysts), a hole in the heart, clenched fists, and chin and nose measurements all relating to Trisomy 13, 18, or 21. She couldn't be certain unless I went through further testing. We, again, refused any tests because the results wouldn't change anything for us. We went home very disheartened and very frustrated at how the doctor delivered this news to us.
A second ultrasound was done at the same clinic by Dr. F. on January 28. My husband left for Haiti with his guard unit this day, and I went alone to the appointment. Another long, silent ultrasound was performed by the tech, then by the doctor. I didn't see any of this ultrasound because the monitor was never turned on, and I just laid on my back looking at the ceiling. He said, “Well, there's definitely something wrong with the heart, and this along with everything else the baby has...” Again, amnio was recommended, and I asked what good would it do? Nothing could be done to correct any “issues”. He said the testing would be for management purposes. If the baby had Down's (Trisomy 21), they would have a team standing by to help the baby. If the baby had Trisomy 18, they wouldn't bother. Those were his words. I said that they should treat the pregnancy as though there might be some challenges.
I left my ultrasound alone and frustrated. I began to pray that we would accept whatever God's will was for our baby and for us. I also prayed that the doctors were wrong. I actually told God to "bring it on." I told only a few friends that we were pregnant, the rest eventually realized in February and March. I rarely talked about the pregnancy to anyone. When asked, “How are you feeling?” My answer was always, “Great! How are you feeling?” I just tried to avoid the questions. “What are you having?” "Either a boy or a girl," I would answer. It would drive people crazy that we didn't find out. Then they'd usually say, “Well, as long as it's healthy, it doesn't matter.” I always thought, “Well, the baby might not be healthy.” I kept pretending that everything was fine, because I didn't want to go into detail with anyone. I just kept praying that we, especially my husband, would accept God's will...healthy or with special needs...we'd love and care for this baby. At this time, I also began to pray for a baby with Down's Syndrome...our alternative was fatal.
I read a devotion while my husband was in Haiti, shortly after the 2nd ultrasound. It brought me a lot of comfort at that time. It said, “God is the creator of all things. Everything that is exists with His knowledge and by His creation.” It also included the Bible passage from Romans 8:28, “In all things God works for the good of those who love him.” God created this baby for us...healthy or with challenges. He knows exactly what His plans are for us and He will see us through.
Thankfully, my husband came home from Haiti after 2 weeks. He wasn't scheduled to come home until the end of June...after our baby was due. Dr. M. tried to see me every 2 weeks since the 1st time I saw her. The 2nd visit she said that my BP was too high. It was 128 over 80 something. “Come back next week. If it's still high, I'll put you on BP medication.” (120 over 80 used to be a great BP.) I was convinced that my doctor felt I was just too old to be having a baby. I definitely developed an attitude with this doctor. I was always pleasant with her, but I never wanted to be in her office.
After another visit, she said that she was scheduling a fetal/echo ultrasound with Vanderbilt. Instead of calling me to tell me when the appointment was, she wanted me to come in for an office visit. I canceled appointments so that I was seeing her only once a month. I was beginning to think that she was trying to collect as much money from our insurance as she could. I felt absolutely no bond with her. I just wanted to get in and get out as quickly as I could. In hind sight, it would have been so easy to just go to a different doctor. I'll never know why I didn't do that. I know now that I'll make sure my daughters have a caring doctor if they are blessed with a husband and pregnancies.
In March, we saw Dr. K. She did a fetal/echo ultrasound and focused on the heart. She said that there was a hole about 4 mm. But it didn't concern her. She also said the baby had a VSD (ventricular septal defect). The left side was smaller and the right measured large. She had a much better way of delivering this news to us. She could have told us anything...She had a wonderful "bedside manner". We were now more optimistic. She wanted us to come back in another 6 weeks to see if there were any changes.
Back in February on the 27th, My husband and I talked about the baby and how we felt as though we shouldn't have decided to have another child. We definitely wanted another baby but were made to feel by most doctors that we shouldn't. It felt as though our joy was completely taken from this pregnancy. The comments made by friends were also frustrating. “So this was an accident!” or “Was this a surprise?” No, we planned this, but what if we didn't? What if it was a surprise? (Nothing is a surprise with God.) Does that mean that if the baby was miscarried, born still, or died after birth, we wouldn't hurt so much? I just don't understand the questions people ask. Why can't they say, “Congratulations!” This same morning while we were in bed talking about our baby, my husband said that he didn't know what he would do if anything happened to him or her. I told him that God would help us through this. He created this baby for us, and we would need to pray for acceptance of His will. We held each other and cried. I also said that I wouldn't get pregnant again.
The end of March, we went to WI for our oldest daughter's confirmation. She was attending a Lutheran grade school for her 8th grade year while living with my sister. Our daughter begged us to let her go to school there, because she didn't care for the public schools here. At that time, I can remember feeling very uncomfortable and having a right sided pain under my ribs when I sat. My belly felt so big. It was always hard. Mom was certain that I was having twins. Many commented on my size. Each Sunday in church I'd hear, “You are huge. You look like you're going to burst.” This started around 29 weeks.
At my March 31st appointment, I was measuring 2 weeks bigger than I should have. I was 29 weeks measuring 31. My weight was up, too. Dr. M. listened to the heart and said it sounded great. She never told me the baby's heart rates or my BP. I was beginning to wonder if she even knew how to figure what the heart rate was. I was always left in the dark. As for my size, she said that I should “lay off the carbs”. I never felt like I was eating much more than normal. I also figured that since I hadn't had a problem taking the weight off with the other three, I wouldn't have a problem with this one.
The middle of April (13th) I had the glucose test. A couple of days later (15th) at my appointment, Dr. M. said the results were great. I was still measuring 2 weeks ahead of schedule. I was getting a little excited thinking that I'd be delivering early for once. My next appointment was in 2 weeks on April 30. Everything still seemed o.k. ~ still measuring big and again not knowing the baby's heart rate or my BP.
On May 4th, we went back for our 4th ultrasound with Dr. K. She said that the hole in the baby's heart was about 5 mm. now. The left ventricle still measured small. The right ventricle measured large. She couldn't get a good view of the aorta. She said there could be possible narrowing and if this were the case, medicine might correct it. She couldn't give us a definite answer, so we'd have to wait until the baby was born. We began to plan for a possibly longer hospital stay and even toured the NICU that day. Dr. K. wanted us to deliver at Vanderbilt just to be safe. We were still hopeful. We were happy to be having my care transferred to Vanderbilt. At this ultrasound, I asked Dr. K. how the baby was measuring. She said that all the measurements were consistent with a baby that was 34 weeks. So everything was good. This same weekend I planted corn and beans. I was very uncomfortable.
On May 11 at 35 weeks, I had my final visit with Dr. M. She said that my weight had spiked up pretty high. I think that it came close to 180 lbs. I started out at 125. When she measured me, I said, “Let me guess, I'm measuring at 38 today.” She said, “You actually are.” She also checked my cervix, but I wasn't dilated. She heard the heartbeat and said it sounded good. In my opinion, she never listened long enough to get an actual heart rate. I also had a non-stress test done that day. It took the nurse 15-20 minutes to find a heartbeat that measured on the monitor. She commented on how hard my belly was. She asked if I was having a contraction. I said, “No, it's always this hard.” She had to have Dr. M. come in to find the heartbeat. After about 30 minutes she said that everything looked fine. She wanted me to come back in 3 days for another NST. She also wanted me to come in the following week (May 18) for an ultrasound. A “biophysical” she called it. So suddenly, she was equipped to do an ultrasound? I canceled the NST and ultrasound. I only wanted to be seen at Vanderbilt.
I absolutely realize now that I should have been more involved with my own care. There are so many things that I should have shared with my doctor. Nothing would have changed the outcome, though. Our daughter was conceived with a fatal chromosome defect. Of course, there continue to be the "If onlys". I continue to tell myself that if the doctors would have told me, without a doubt, that our baby was going to die, I never would have believed them. I do wish that I took better care of her while I carried her, though. I wouldn't have been planting strawberries or vegetables just days before she was born. I would have taken more pictures of her while she grew inside of me. I also realize that satan fills my head with regrets and he has definitely been working overtime on me for the last couple of years.
No comments:
Post a Comment