** Note- Beginning on January 1, 2022, Maddie’s Footprints will be taking over for Anna’s Grace in Greater Baton Rouge, at the request of Anna’s Grace’s Founder, Monica Alley. We wanted to preserve these beautiful stories from the AG blog, so we are copying them here. Thank you to all of the AG families who have shared their journeys so that others don’t need to feel alone.
To say I had “writer’s block” would be an understatement. Honestly, to sit down and type out any of this was something I dreaded. I volunteered because I know God did not allow me to suffer through any of this in vain – and I made it my mission to help and bring awareness to others. These days though… these days I just want to hide under a rock and pretend like nothing ever happened. It’s that “grief wave”, and if any of you have been on this wave—you know exactly the ups and downs that come with it. Some weeks are fine, other weeks are not. The days are busy and pass by quickly… time keeps ticking on, but in these moments when my fingers hit each key and write out the thoughts in my head, somehow time stands still. The pain I feel deep inside comes to the surface and the ache in your soul is at the forefront waving “hello”. It’s a crazy thing. I can talk about all the trauma in passing, but to sit down, alone, in the quiet, and type this out… each key stroke… OUCH. Reality.
Yep, it happened. It happened to me. This is no short story. Actually, I shortened it as much as I could, and it’s still long… so sit back, and hang tight. It’s a wild ride.
On December 11th, 2018… the ultrasound first popped up on the screen in front of us. There was a lot of confusion on my face as I studied what I was looking at. I was relieved to see SOMETHING, because they did not know if implantation was happening originally or if I was miscarrying. I kept saying to myself… “wait, that doesn’t look right”, “what is that?”, “there can’t be two in there because all I see is one amniotic sac, so I have no idea what I am looking at.” I held my breath and just waited on the tech to say something, anything. Honestly my husband had not a clue what he was staring at so I have no idea what went through his mind at all. The tech finally said something. I kind of blacked out for a moment, and I don’t really remember the exact words, but she said something like, “There’s TWO of them!” It wasn’t a super excited face though, it was a face of worry, which I also did not understand at the time. I was so shocked that I got sick and started panting, my husband had tears streaming through the peaks of laughter. The tech ran out to get me some water and a cold rag so I would not faint, and gave us a few minutes to process all of this. After a few minutes, I finally caught my breath so we could continue on. The tech came back in and started scanning me again. We got to hear the heartbeats. YAY… two strong little dancing gummy bears. She then went on to explain to us that these will be identical twins. WOAH, okay. I didn’t know how she could tell so soon. She told us that she could not find an amniotic sac separation between the two and it looks like they are also sharing a placenta. Ok—lets be real, I had NO idea what any of that meant. All I kept hearing in my mind was, “twins, oh my gosh, twins, twins, TWO of them, TWO of everything, oh my.” She went into a little more detail, but again, the severity of what she just said to us did not sink in. We were clueless, just as a lot of people are about rare high-risk twin pregnancies.
We took our ultrasound pictures upstairs to meet with the doctor. We were still on cloud 9 of pure shock at this point. When she walked into the room, I saw the concern on her face instantly. She said, “I know how you are, and it’s better if I just shoot it straight with you. This is a very high risk pregnancy, the most dangerous of all, and there’s a big risk of you losing these babies or at least one of them. For your own sake, I would not tell anyone you are having twins just yet.” She went on to explain that this was not a genetic twin pregnancy, this was a fluke where somehow my one fertilized egg split in two. When this happens, sometimes the sacs and placentas don’t have time to develop to each baby accordingly. It all depends on the implantation timing. There is a disease called Twin to Twin Transfusion Syndrome that is common in these types of twins that share a placenta. They’re essentially fighting over blood and nutrients and sometimes it is not equally distributed. When TTTS is present, that means the blood vessels in the placenta have actually crossed between the babies and one baby is receiving all of the other baby’s blood, nutrients and fluid. One baby receives too much, one receives too little. The risks with them sharing one amniotic sac was that their cords can get wrapped around each other and tangled very easily. Again, she could not initially find a sac separation at all, so she diagnosed them as what is referred to as “Mono-Mono Twins”, where both high-risks are present. Wow, the thing you learn in just 15 minutes. Who else thought twins were just simply either identical or fraternal? Nope, way more complicated than that!
The fear took root that day. She did her job, she told me the risks, she did not get my hopes up that this would be an easy ride, she promised me she would take care of me and I was in the best care possible, but when I tell you that I left with a black cloud that day… I mean it. To know you are carrying two babies you may lose is terrifying. I can’t even put the feeling into words. How do you get excited? How do you connect with them? How do you tell people you are pregnant knowing you may have to tell them you’re not anymore? There was no “happy pregnancy” for me… there was no “glow”… this was life or death 24 hours a day, 7 days a week, and TRUE fight until the very end.
Now that you have the backstory, I can try to catch you up with the rest. After the initial appointment, I began bleeding. Turns out I had a subchorionic hemorrhages (blood clots between the sac and placenta) which landed me in the hospital on many different occasions for miscarriage scares and then ultimately bed rest for months. These blood clots can lodge itself between the sac and the placenta and grow in size where it can then pull the sac away from the placenta and the baby has no chance of survival at that point. In my case, the placenta was the life source for BOTH of my babies, not just one, so this was very serious and intense for me.
As time passed, things began looking up and it appeared that my babies were not at risk. My babies made it to the 20-week mark with no signs of TTTS, which typically means you are in the clear. But in late March, things started heading south quickly, and on April 1, my worst fears came true. My babies had developed rapid onset TTTS, which had already progressed to Stage 2. Without surgery, it would be fatal. I could not breathe. I was a mess. The tears just kept coming. I remember just moaning and screaming in disbelief. This is really happening.
We were put in a quiet conference room to mourn alone and gather our thoughts, then we got a game plan together. They admitted me to Antepartum right away because of the pain I have been in and scheduled my surgery for the next day. The morning of the surgery, they did one more ultrasound to get the final plan together of where they would suture me and go in, how the babies were situated, where the placenta was located, etc. As soon as they started scanning me, things looked so much worse. They had already progressed to stage 4 and the doctor was even more stunned than he was initially. Progressed 2 stages in just 24 hours! Stage 4 is when the recipient twin is in heart failure and has fetal hydrops syndrome, the bladder in the donor baby is not visible at all. The chances of you losing one baby or both just multiplied, by a lot. Actually, the next stage is stage 5, the most lethal stage, which means death. It was a race against the clock. My surgery was scheduled for 12 but they rushed me back there when they could and started early.
The surgery had several unexpected complications, and I needed another surgery and blood transfusions to compensate for all of the blood I had lost. Finally, miraculously, I suddenly stopped bleeding. My life was spared that day.
I woke up in such a haze. All I wanted to know was is if my babies were ok. Somehow, to our surprise, they were hanging on through all of this, even the emergency surgery when I was barely hanging on myself. Two strong girls!!!!
As if we didn’t have enough “worst days”, we had our worst, worst, WORST day. On April 5 I had an ultrasound to check on my girls’ progress. That morning, I heard both heartbeats on the doppler, so I had no concerns going into it. However, the scan showed that Baby A’s heart was no longer beating.
I was still bed bound, swollen, hooked up to a million things, confused, traumatized at this point, and then to be told my sweet Haislee passed. I have never felt such pain deep inside in my life. I remember going, “GOD WHY… what are you doing to me? Haven’t we suffered enough? Now you take my baby?” Deep inside I was not mad at God, I do hold on to his promises, I just could not understand how much more pain I could possibly take on. And then, THEN you feel the survivor’s guilt. SO many “what ifs.” It will drive a person insane.
I replayed so many scenarios on how I could have changed the situation, but reality was, there was no changing the situation. I don’t think sickness or disease or any harm comes from God, but I do believe He has the power to stop any of it if it is not His will. This was God’s will… if it wasn’t, He would have saved her. I had to make a decision that the only way to get my physical self better and to mentally get through this, was to focus on Baby B and keeping her alive. You have no idea how many times I smiled through the pain. Although I wanted to bathe in my grief, curl up in a ball and just cry for days, hours, weeks, months, I couldn’t. I was not going home, I was stuck in this hospital bed until delivery, and I had to hone in and channel some positivity. God is good because Twin B, Haddi, who was in heart failure and had fetal hydrops syndrome, even some other heart issues, was improving by the day. Each day they found a heartbeat on her was such a miracle.
Each scan (which was like every day) was exciting, yet agonizing. Can you imagine seeing one baby improving and wiggling around, and then on the same exact screen see the other baby still and lifeless? I had to constantly keep shifting my mind on Haddi and how great she’s doing. It was a battle and I was torn between grief and joy. How do you even balance both?
While I was still trying my best to keep going and just to focus on Haddi, I had social workers and psychologists in and out of my room reminding me that I needed to arrange Haislee’s funeral, decide if she will be cremated or buried, if I want to see her after delivery, what clothes she will wear, if I want her in my room after, and all the dreaded things you don’t want to think about but have to think about. I felt like a horrible person, because I wanted nothing to do with it. I couldn’t think about burying my child, or even holding a dead child, or anything I was about to face. I just wanted someone to plan the burial for me, pick out her outfit, pick out the flowers, do it all, so I can just pretend this is not happening. I could not do it. My flesh and blood and a human my body worked so hard to create is about to be ripped from me and placed in the ground. There’s no bringing her back.
I remember, while laying in the hospital bed trying to avoid the inevitable, the social worker came and handed me a sticky note with the website for Anna’s Grace Foundation. She told me they could possibly assist me with the headstone/name plate for Haislee. I put it off for days, but finally I got out my laptop, read about the foundation and all it does for our community, and was able to fill out an application for assistance. The application process was quick, and easy, which I appreciated. Did I mention I absolutely dreaded this whole process? It was agonizing. Quick and easy was my saving grace. We were quickly approved by Anna’s Grace Foundation a few days later, and it was truly such a relief to have one less thing to ponder over. The cost of burying someone is outrageously expensive… and something people should not have to worry about while they are grieving.
To cut costs and for sentimental reasons, we decided to bury Haislee above my grandmother under her headstone instead of having her own plot. Thankfully Anna’s Grace was able to assist us in covering Haislee’s name plate in full. My OBGYN’s family with Mouch Cabinetry offered to make Haislee’s beautiful casket at no charge. Even then, after all the generosity, my husband had to sit down and hear the total of “thousands”. Let me remind you, this was just a burial, not a full funeral. It was very stressful for us. I was still in the hospital, I had been out of work on bed rest before that, and my husband is in ministry and everyone knows that job has nothing to do with money. Just as we were stressing about how to pay for this, along with grieving, we had generously received money to cover the rest of the burial. That does not happen in all cases though. We were very blessed, but it is important to see the need and what Anna’s Grace Foundation can offer families during a tragedy.
By partnering with Anna’s Grace, you can assist families just like ours who truly need assistance with an infant burial they never expected to happen, and those that need support when they are facing the hardest times of their lives. One in 4 pregnancies will end in loss. That’s a lot of affected families. I am sure you can think of a handful of people you know just in your circle who have lost a child. Anna’s Grace not only assists with burial costs, they also do special things in memory of your child, like the sweet footprint memory wall on their website, or even surprising you with an ornament shipped to your door with your child’s name around Christmas time. It is truly a wonderful foundation that is a great asset to the Baton Rouge community that represents a true need. We cannot thank them enough for being there and for helping us when we were in the fiery pits of hell reaching for just one hand to pull us up. Be that hand for someone today, by visiting www.annasgracefoundation.com and either getting involved as a volunteer, simply donating, or even joining the Annual 5k coming up in March. We are happy to be participating in the Annual 5K this year and to be giving back to the foundation in our angel’s name, all while bringing awareness.
My husband, Logan, myself, Hollyn & Haddi want to thank God for His grace and mercy above all. Gosh—there were many days I fell short, but He loves me anyways and is close to the brokenhearted. We want to thank ALL of our family and friends who have loved and supported us through the roughest year, and not only that, but by honoring Haislee’s legacy and donating to a foundation that is meaningful to us. You are keeping her name alive. You are making a difference. Anna’s Grace left an imprint on our hearts and will forever be part of our story, and so will you.
Haddi is our miracle girl, who to all of doctors’ surprise, has ZERO disabilities, completely unremarkable. She is strong, smart, active and you would NEVER know she was so sick or so tiny. She will always know she had an identical twin that sacrificed her life to save ours, as we were both dying trying to keep everyone alive. We can’t wait to see her again one day.
To learn more about Twin-to-Twin Transfusion Syndrome, and to educate yourself on high-risk twin pregnancies, please visit www.tttsfoundation.org. Education is key.