Sadie and Spencer's Story
April 12 (2 days after my daughter first birthday) I was having some bizarre stomach pains so I went to the ER and from a urine sample they told me I was pregnant. I didn't get any more information. I was so scared my pregnancy was unplanned. In fact I had a plan that should I get pregnant before my daughters 2nd birthday I would terminate. Well I had never terminated a pregnancy so when my "plan" was questioned I realized I didn't have it in me. There was no way. So we started to get excited. Around 7 weeks I got an ultrasound and it showed we were having identical twins ( shared sac) tears started streaming, happiness, fear of the unknown. But ultimately we were ecstatic! I remember the doctor saying at that appointment "just because you're pregnant with twins does not mean you will deliver healthy twins" words that will forever haunt me.
Early in my pregnancy I was informed of the high risks, most predominant, twin to twin transfusion syndrome. Or TTTS. Sharing a sac you run the risk of one baby getting more blood, or fluid, or oxygen, or nutrients than the other. This typically happens early on between 7-18 weeks. If caught in that time frame they can do a procedure with a laser to even the flow through the umbilical cord. This procedure has saved many many twins.
Anyway upon initially learning of TTTS I didn't think much of it, shrugged it off. Weeks passed we learned we were having girls, and we both just loved our little girls! Started buying clothes and coming up with names. They were always very healthy and close in size. Life was great. Contractions started coming around 23 weeks (normal in multiple pregnancies) I must have gone into L&D 30 times. They always got them under control and sent me home. Well around 25 weeks they noticed baby b was a little short on fluid. They said it was nothing alarming but wanted me to come back in a week. 26 weeks the fluid was lower. We were diagnosed with TTTS at 26 weeks (very uncommon, too late for laser) I was admitted into antepartum where I stayed for the rest of my pregnancy. Twins should have about 8 cm in depth of fluid each. Days shy of 28 weeks my daily ultrasound revealed baby a had an over abundance at 17 cm and they couldn't find a single pocket of fluid for baby b causing her to be stuck along the side of my placenta and she had fallen a pound behind her sister. My OB was ready to administer the steroid shots for their lung development and deliver. After consulting a pernatologist's they decided to try amino reduction first. That day they drained 2.5 liters of fluid from baby a. During the amino reduction they accidentally poked holes in the separating membrane. Ten minutes after the procedure baby b was moving and squirming and practicing her breathing for the first time! Over the next week the separating membrane started to shred, and the girls were fluid sharing. They both looked great and baby b gained that whole pound in one week. Since the membrane was shredded the risk of a cord fatality went up dramatically. We planned to deliver between 32-34 weeks. The girls continued to do great passing their BPP's everyday. We were in the home stretch!
I woke up the morning of 30 weeks and went for my daily ultrasound. Baby b didn't have a heartbeat. I screamed at the top of my lungs. I was rushed to an emergency c section to save baby a. During surgery my doctor said there was still some cord flow in B's cord meaning we missed her by hours.
(In the womb) when baby b died everything loosened up and baby a sent a majority of her blood to baby b. So at delivery baby a was very pale almost grey. She had one third the blood count she should have. She was rushed to the NICU. As I laid in recovery holding my still baby b I named them. I had chose names months prior but I wanted to wait till they were born to pick who was who. The little girl, gone in my arms then became Sadie Jane and her sister up in the NICU became Spencer Marie. A neonatologist came down to tell me Spencer was very sick, "sickest baby in the NICU" he said. They were giving her blood transfusions to raise her blood count. A few hours later I'm still in recovery and he comes back down to tell me she had a seizure. They put her on medication to prevent another but it would make her sleep so there was no telling if or how much damage the seizure did to her brain. The brain scan was scheduled for the following afternoon. I learn later in the evening her body wasn't accepting the new blood so they wanted to start replacing her blood entirely. It was starting to work, she was getting some color to her. We had all of the hope in the world. I visited her many times. The next day I went up to the NICU and the brain scan was about half way done. I spent an hour with her and went back down stairs. Then got a call that Nathan and I needed to come up as soon as possible and alone. Nate had just went home to shower for the first time in two days. I called and he was in his way back. I beat him to the NICU and asked what was happening. They wouldn't tell me till he got there. He walked in a few minutes later and they escorted us to a room where they told us our sweet little Spencer Marie had no remaining brain activity.
We went down stairs and asked my room full of family to leave because it was over and we wanted to be alone. We went back upstairs where they were manually keeping her breathing. They removed the tubes. Placed her in my arms. She struggled to breath for two hours. The longest, most painful two hours of my life. The moment her heart stopped, mine knew. My heart new she was gone.
Sadie and Spencer were born October 6 2014 both at exactly 3 pounds 8 ounces which is bigger than average for their gestation. They were big healthy girls (for their age)
Doctors believe a blood clot formed when we were in the thick of our prior trouble and released in the early morning hours of October 6th, and Sadie's heart couldn't handle it.