I found myself looking at the sky at night asking God to help me get through the pain from the polyhydramnios. The fluid from Tessa became stronger and heavier in my belly, and the only relief was to take baths at night once my husband and daughter were asleep. I could not feel Tessa moving as frequently because the majority of my belly was filled with amniotic fluid and it made it hard for me to know if she was still alive. As the days went on, I grew bigger, and Tessa still remained small and growth-restricted, I was told she was in the 1% for her growth. Basically, if she were in a room with 100 other babies her age, she would be the smallest.
Once I hit the 30 week mark, I was wondering how much more time would I have with her. How many more weeks would there be? Would I make it to 40 weeks? Would my body allow it? Am I going to pop and break my water in public? My doctors were saying there were gallons inside me. At what point do we say no more and reduce the fluid?
The AFI numbers began to increase more quickly. When Tessa was first diagnosed with Trisomy 18, I expressed to my doctors that I wanted to be able to meet her. I was hoping to see her alive, and I was praying that this fluid situation wasn’t going to be what damages her, or me!
The risks that the polyhydramnios came with were frightening. For Tessa, if I were to break water naturally she was at risk of dying because of cord prolapse, which is basically when the umbilical cord rushes out ahead of the baby, cutting off oxygen and causing her to die. She was also at risk for placenta previa, where the placenta could start to become detached from the wall, which would also result in her dying. And of course, there was still a chance her little organs would simply stop working, which would result in stillbirth.
For my own health, the most dangerous concern was premature labor with post-partum hemorrhaging because of the severe polyhydramnios. All sides of my medical team had explained that the larger the uterus becomes from being stretched out from excess fluid, the higher the risk of post-partum hemorrhage because after birth, the uterus cannot contract fast enough to stop the bleeding. I was also at risk for preeclampsia, so I was monitoring my blood pressure at home daily, as well as taking my temperature a few times a day. Per my specialist, if I were to ever hit even a low-grade fever of 100, I was to go directly to the hospital.
At my 31-week appointment, we discussed my concerns and how I was doing mentally. Mentally, I insisted, I was okay. Physically, I hurt, yes, but I was trucking through. I was advised to continue to take it easy, as my belly, on the outside, measured full term. How much bigger can I get? I wondered.
Knowing that whatever was going to happen wasn’t going to be easy, physically and emotionally, I wanted to make sure that the plans we’d made were carried out by someone who knew and understood what it was we wanted for our baby.
In a big practice, I knew my OB might not be on call when I the time came. “If possible, when it is time, is there a way that I can request you to deliver her?” I asked him. I knew that he understood what I wanted for my delivery plans and how sensitive the situation was. “Yes, I would like to deliver her, if I am here. I will be the one to do that for you.” I felt relieved. “Is there anything else I can do for you?” he asked.
“Yes. Just don’t let me die.” I said this facetiously, but I was quite serious. The thought of my husband and daughter losing me and Tessa together scared me. But I knew that I was in good hands between God and my medical team.
A few days later, after another appointment, I wrote on Facebook again, with a very real prayer:
“I had yet another appointment today. I am measuring 41 weeks. I am 32 weeks. Pretty sure we have now entered the “severe” side of the polyhydramnios. I’m not going to get into the scary side of that on here, Google if you would like. But measuring that big that fast not only hurts, but all the possibilities of things that can go wrong is just unreal! Even solutions to the poly is scary and possibly harmful to me and baby.
“Going out alone in public is a full task. It took me EVERYTHING to get pumped up enough to go to Target yesterday to get things for my hospital bag with this giant belly (and go figure I forgot my wallet and had to make an extra trip.) Not to mention the undying fear of breaking your giant water somewhere with no help.
“Tessa has taught me so much already. Patience and trust in God. I am just praying that with her diagnosis of Trisomy 18, that we get to meet her alive, even for a moment…I know God has a plan and she will arrive the way she is meant to. I can’t change that. I just know that although I am now feeling extra anxious, I also feel strong and determined for my family.
“So I pray- that my health stays positive these last few days, or weeks. I say days because my body is being tested to the max. That Tessa’s little heart and body hold on a little longer. I pray God gives my doctors the knowledge and focus to keep on top of everything and to help make the correct decisions when it comes to me and my daughter. And I also pray that God gives not only myself, but my loved ones the strength to see through all this too and to stay strong. Things are getting scary, God, I keep my trust in you and give you all my faith. I know you’ve got this. Amen! “
My husband began to look more worried by the day when he would come home from work. After my last Target trip we decided it was no longer safe for me to drive to do errands. My family and husband took turns doing the grocery shopping, and my mom would come by every day to make sure I was okay. Even then, I was stubborn. I wanted to be the one to do all of it, but physically, I just could not do something as simple as grocery shopping anymore. I just needed the strength to take care of my household and hold on as long as I could. I couldn’t even give my daughter a bath without help, or help her pick up her toys off the floor anymore, as much as I tried.
At the next appointment with my specialist, I was a little over 33 weeks, the question of whether or not I had reached “severe” was answered quickly. There was so much fluid in me that we could not even see Tessa right away. It was just a black screen. My heart began pounding before she popped up and they found her curled up, head down in my cervix. I had some contractions during the ultrasound, but my skin was so stretched out that at this point, to me, my stomach was just rock solid all the time, so when asked “Do you feel that contraction?” my only answer was “I think so?” I couldn’t feel her as often anymore. It broke my heart that this poor baby had such a lethal diagnosis, with such an awful congenital defect in her heart, and all of these health problems stacking up, and now to top it with this fluid, where her mama can’t even poke her back through her belly anymore. It was thought that at this point, her esophagus was not connected, resulting in the fluid growing. AFI was now at 50. My heart sank further.
We began to discuss amnioreduction, a procedure much like the amniocentesis. The sole purpose is to remove as much fluid as possible, back down to a safe AFI number, near what is “normal”. Keep in mind, that “normal” pregnancies have an AFI between 8 and 18. The reason we were avoiding doing an amnioreduction was due to the fact that it could give me an infection, put me and the baby at risk for breaking the water, and it could start preterm labor.
The biggest factor to consider was that once you start amnioreduction, you usually have to keep doing reductions weekly because the fluid could come back in as quickly as 48 hours. Do you keep poking holes in your uterus and possibly hurt the baby or yourself in the process? How many times would I have to drain if we chose to go that route? Is it healthy to drain fluid and then have it keep increasing within 48 hours and do it all over again? I could only picture a giant water balloon expanding and contracting. That can’t be healthy!
I left the last appointment not knowing what was next. 50 AFI was worrisome to me. No wonder I couldn’t bend anymore. It was hard to eat, breath, and get comfortable to sleep. My belly was starting to pull downwards, and was becoming harder from constant contractions, making it difficult to where normal clothing. I knew my Doctors were meeting with other specialists and discussing options and trying to make the best decisions for me. I was trying to walk with God and trust Him enough to let my faith keep me strong. Tessa was still here inside me, so I needed to keep on keeping on.
My biggest fear now was that my water would break at home while I was alone with Tatum and I would bleed out and lose my baby in a way we had tried so hard to avoid. I was afraid I would be in need of help and I wouldn’t make it to the hospital in time to get the care we would both need. Our whole goal since the diagnosis was that Tessa gets to enjoy the short life, even if only in the womb, and would never suffer in any way. The polyhydramnios could ruin that plan and so much more.