Forever changed – Miss Marlee
In 2009, Shawna’s life was turned upside down. She had gone from being excitedly pregnant, to being told her baby was sick, and would most likely die. The following account is her diary, published as I received it. I have not edited her words, they are perfect and heart wrenching as is.
June 27, 2009 a baby # 2 was conceived in love.
August 05, 2009 heard our baby’s heartbeat for the first time at 7 weeks gestation. After going through our first loss together 5/12/09 at 8 weeks gestation, this day and the sound of that beating heart was priceless and brought us to tears. Though we will be scared of another loss, we have to hope for the best. Seth was with us, along with our lovely bereavement nurse Darlene Fisher of the Women’s Hospital.
September 16, 2009 had blood work and ultrasound today. While trying to get this baby in a good position for a good ultra sound pic, we got a good laugh. Baby waved, did a little dance, flipped over and went to sleep instead.
October 19, 2009 Doctor Walker’s office called to state blood work testing was high and that we needed to be scheduled to see the specialist. Not the news we wanted to hear on dad’s birthday, the rollercoaster of worries just got worse.
October 29, 2009 Ultra Sound today’s date shows fluid on the back of baby’s neck, not a good sign. However we were told It’s a Girl! We had a hard time making anything out on the ultra sound for the way she was curled up in a ball; however dad caught her stick a finger up.
October 31, 2009 Mom and dad each wrote names down without discussing them to attempt to name this baby girl. When done it was obvious what her name had to be……”Marlee” was the only name on both lists, even spelled the same (what are the odds of that).
November 05, 2009 Spent five hours at Dr. Fitzpatrick’s office today. We were told Marlee had what was called Fetal Hydrops (fluid built up on the back of her neck and abdomen, which has a high mortality rate). We were told outlook was very grim and he didn’t see her making it. We were then scheduled weekly and went through an amniocentesis and blood work for chromosome and infectious testing.
November 09, 2009 Was called to say our initial testing came back negative, awaiting the full test results. We will take this and let it give us hope that Marlee is strong and will make it into this world.
November 11, 2009 Dr. Fitzpatrick advised although testing came back normal, the Fetal Hydrops remains. Fetal Cardiologist was called to his office to see us that night to check on Marlee’s heart. After spending 3 hours at the office we were told her heart looked good, just have to get a game plan on removing the Fetal Hydrops fluid from her body to give her any chance possible of living. Told that the surgery Marlee would need had not been done in the area before. Dr. Fitzpatrick stated he has performed such surgery once and that was a year ago at Duke University. He was going to call his colleagues at Duke and University of Cincinnati to discuss Marlee’s condition.
November 18, 2009 Dad underwent blood tests also today, checking all we could to make sure we knew all we could for Miss Marlee. Dr. Fitzpatrick noticed that amniotic fluid was low today’s visit (sign baby is in distress) and that Marlee was showing signs of anemia. Told mom and Marlee must go to surgery at 3pm this Friday to attempt to remove the fluid from Marlee through mom’s belly.
November 19, 2009 Up until this date, mom had only felt occasional flutters from Marlee in her belly. But Daisy the beagle and mom fell asleep in the recliner tonight together and Marlee moved or kicked strong enough to feel her for the first time with her hand on her belly. This would end up being the only strong movement ever felt.
November 20, 2009 Mom and dad went to Deaconess Women’s Hospital for Marlee’s surgery at 22 weeks gestation. Had an ultra sound before surgery. Miss Marlee showed her face for the first time, sticking her tongue out at us (what a little stinker). Wow this surgery took an awful toll on emotions. Dad was left in the room for to await our return from surgery. Mom was given only a spinal block and was fully awake with the blue drape across her face to not be able to see what Dr. Fitzpatrick was doing. The surgery room was full of staff to assist the doctor in these surgeries that they had never witnessed before. Mom laid there the 3 hours praying continually that Marlee had the strength to make it through this day. Marlee had 3 surgeries (each of the 3 all high risk of loss) and was told it appears she is pulling through with a strong heartbeat. She underwent Fetal Blood sampling testing from her umbilical cord, she had the fluid removed from both sides of her abdomen from the Fetal Hydrops, and had a full blood transfusion through her liver since doc was unable to get a good clear view of the vessel needed in her umbilical cord. Mom was left with 20+ visible needle holes in her belly, but with much relief that Marlee was such a fighter and pulled through to return to dad who was anxiously awaiting our return to the room. What a tough cookie little Miss Marlee was.
November 23, 2009 Went in for our re-check from surgery to check on Marlee. Was told her heart and Doppler readings looked good, however the fluid that was just removed on Friday had already returned. Mom now has too much amniotic fluid. The Fetal Hydrops appears to be back in her abdomen and in the placenta. Was told once again outlook is grim. We will be re-checked again next week. If her heart and doppler’s still look good we may need to repeat her surgeries. If the fluid is not removed her lungs will not be able to finish developing and she will never breathe even at birth.
December 01, 2009 Went back to see Dr. Fitzpatrick, 24 weeks gestation. Mom had a battle with emotions over Thanksgiving holiday weekend. Seemed to be the longest week before this re-check. Mom has a sense that something was not right, however no know complications or warning signs so tried staying positive. Only to be told Miss Marlee had no heartbeat with her ultra sound today. Mom and dad were taken down at 5pm to labor and delivery to be admitted in order to be induced to say Hello and Goodbye to Miss Marlee. At 6pm meds were given to begin the process, doubling each dose every 4-6 hours.
December 02, 2009 Still waiting to say hello to Marlee. What a stressful time, watching the clock minute by minute awaiting this nightmare to be over. Dad keeping such a watchful eye on mom, at her side every moment. Neither slept well, only drifting off for moments at a time, but quickly waking up to check on each other. We had nothing with us at the hospital being we left the house for what we thought would be just a doctor’s visit only. Dad was sent to purchase some pajamas and such for himself in order to be able to shower. Mom hadn’t been allowed to eat since yesterday and was finally given a break in meds to have dinner with dad and then start the process again. Having to have meds put directly on moms cervix was the most painful thing the past several hours. Dad held moms hand as she clenched in severe pain each time they had to place more meds trying to speed up the process of delivery.
December 03, 2009 What a long morning. Mom had been up since 4am with the meds not making her feel well. The cramping finally began. Pain meds did not work, so finally decided to go with the epidural. Dad held moms hand all morning, wishing he could take the pain away. Finally at 1:58pm moms water broke. At 2:11pm Marlee JoAnne was born 2 lbs 7 oz and 13 inches long at 24 weeks gestation. She was cleaned up the best they could and brought back to mom and dad to say hello. Her poor little skin was affected so badly from being in the womb so long after her little heart had stopped along with all the Fetal Hydrops fluid trying to make its way out. We were scared we were going to hurt her being just a touch was wiping her little skin away. What a long few days of waiting for her. Mom and dad were able to clearly see through the swelling and fluid that Marlee had moms nose and dads upside down frown marking on her chin. Marlee was taken to the angel room after a bit so that she could remain cool to help preserve her precious body as much as possible.
December 04, 2009 Mom was released this afternoon for dad to take her home. Mom and dad visited with Marlee a little while before leaving. She had changed so dramatically since being born. Most of the fluid had seeped out of her little body and she was so much smaller in size. We had to leave her behind to wait to be transferred for her autopsy, hoping that something could be learned from her condition that would assist us in the future, help the docs, or someone else. We stopped in Ft. Branch at Grace’s to buy her a stylish little dress, of course we had to get a dress made for a baby doll. Dad found some princess booties and some really small stuffed animals that are just fit for her size to go with her. We will now await her funeral visitation and then to lay her little body to rest with her grandma Joan “JoAnne” so she is not alone. This has been such a hard thing for both mom and dad, however we would rather she go with God sooner than later if that is how it needed to be. We did not want her to suffer in pain. Just wish she didn’t have to have the rare Fetal Hydrops condition and she could have joined us in life. We will miss her so! No parent should have to go through this that is for sure. So glad that we have each other and so much love between the three of us (Dad, mom, and Seth) to get us through. Wishing she could have joined us as planned around March 22, 2010, instead she had to go on to heaven to watch over us with our other little angel, only known as Baby Ault.
December 10, 2009 Mom, Dad, and Seth stood by Marlee JoAnne’s little bitty white casket greeting family and friends that came to pay their respects. This was a very hard night for all of us.
December 11, 2009 Mom, Dad, Seth, Grandma & Grandpa Ault and Grandma & Grandpa Young met at Grandma Joan’s burial site for Marlee’s private service. She was laid to rest with Grandma Joan “JoAnne” today in
December 28, 2009 Went back to the specialist today to go over autopsy report. Nothing standing out for the reason’s behind the fetal Hydrops. They did notice that there was blood clotting in the placenta (which was 3 times the size it should have been due to the Hydrops). This clotting could have appeared after Marlee passed, however just to make sure mom does not have a clotting disorder, she will under go special blood work testing in approx. 2 weeks. Unsure what our chances of the Hydrops happening again, but feel we can’t give up! Found out level were a little high in the blood clotting disorder for mom. However they know this had nothing to do with Miss Marlee’s death. Mom will have these blood levels re-checked if and when pregnant again. If it remains high, then daily shots will be given. (Later in Oct. 2010 found out that I do NOT have any blood clotting disorder….so must have been after death that the clots formed).
Marlee’s Video Tribute was placed on the funeral homes website. What a wonderful memory we have, such beautiful pictures we have of our moment with Miss Marlee JoAnne!
Our thanks to the Now I Lay Me Down To Sleep Organization.
We do this in Memory of our Angel Babies, because of them, we are forever changed!