This week we are sharing our experience after we heard the news that changed our lives. If you are joining us for the first time, or if this topic doesn’t apply to you, please share part of your journey anyway. I know the Lord will use our stories to encourage those walking this path.
If you are a mother who has heard the words incompatible with life, what happened next for you? Share about the waiting if your journey continued. How did you walk that path? What were some of your feelings? What did you do to form lasting memories? What were your struggles? Things you found comfort in? If you chose to induce labor and deliver the baby, rather than waiting, you are welcome to share your story, as well. Although we would encourage a mother to continue her pregnancy, if possible, this is a place to come for love, comfort, support, and healing. And all are welcome. We are all mothers who loved and wanted our babies, babies who are no longer with us. We want to minister to each other in the place we are in, no matter how we ended up here.
Sharing the Journey
Faith and Grace
My time waiting with Faith and Grace after the diagnosis of twin-to-twin transfusion syndrome was sort of a whirlwind and much of my time and energy was spent on survival. Mine and theirs. The size of my uterus was pushing on my organs – heart, lungs, stomach, all digestive areas, bladder – you name it. I was measuring more than 43 cm at just 20 weeks. And, that was a lot for my 5’3″ frame.
The magnesium sulfate was no fun and brought its fair share of unpleasantries to the table. I vomited bile and blood as my uterus stubbornly contracted, and the mag doses continued for about a week. They gave me various meds to help control my growing list of symptoms. I spent many hours that first week listening to women laboring in the rooms on the OB floor and would pray, thanking God for every newborn cry, wondering if my babies were born right now if I would be able to hear them cry. When I asked the nurse in the middle of the night, she shook her head… “Probably not…”
I was then transferred to a high-risk specialist who officially diagnosed the twin-to-twin transfusion syndrome and admitted me for an amniocentesis procedure to remove the fluid from the sac and relieve the twins from its effects, as well as my poor overwhelmed organs.
My uterus contracted painfully, and I shook uncontrollably. They drained liters of fluid from me, as med students surrounded my bed like I was a specimen. Except for one. One stepped out from among them and looked on me with compassion, speaking words of comfort. I spent another week or so vomiting blood that looked like coffee grounds as my esophagus was shredded.
During that week, I had daily ultrasounds to monitor my girls. We had named the “bigger twin” Faith and the “smaller” was Grace. I looked forward to that time each day, soaking in the images of my precious daughters. Faith would quietly suck her thumb and Grace swam wildly about, bumping her sister and everything else in her path. I knew them, because they were my own. I imagined Faith’s quiet strength…like her daddy. And Grace’s feisty spirit…like her mama and grandma Kathy. We dreamed of pink lace and ribbons and a nursery filled with two of everything.
Much of the rest of my time was spent just trying not to throw up and to endure the discomfort. My heart was palpitating. Sometimes it was hard to breathe. There was a lot of pain – contractions, discomfort, and the constant vomiting were taking their toll. My liver was starting to malfunction as well. Churches all over were praying for me and the girls, and we plowed on. After weeks of the vomiting and not eating, they began giving me nourishment through the IV, like someone may get in a coma, I think.
Then, just as quickly as the vomiting came, it stopped. My mother was bringing me sweetened iced tea. She had learned where it was on the floor so that I didn’t have to wait for the busy nurses. The other thing that sounded good was this popcorn that they sold in a big bag at the gas station in our hometown. Tim gladly brought me some. Much to the perplexed gastro-intestinal doctor’s dismay…gas station popcorn was the first food I kept down in weeks. And, it was wonderful.
I was released from the hospital with plans to return for an appointment a few days later. During an ultrasound, our doctors were concerned with the condition of Faith’s heart and sent us promptly to the pediatric heart specialist at another hospital. She was in heart failure. It was the first time that I let myself even consider that we might lose one of our babies – an unthinkable realization. Mine were going to be among the 20 percent that emerged from this syndrome unscathed. My mind had not even allowed the possibility that they wouldn’t make it to term. These were my girls – daughters from a long line of strong women. We had prayed and fought this battle hard. They would make it. But that day, I couldn’t catch my breath and the possibility smothered me. I was given steroid shots to hasten lung maturity and told that I would probably deliver soon.
The news of Thomas’ life-limiting condition, Potter’s Syndrome, brought with it a choice. We were told that we had about a week to decide if we wanted to induce labor early, terminating the pregnancy or if we wanted to continue the pregnancy, knowing that our baby, short of a miracle, would die. There were four more months. I’ll be honest, the answer didn’t come right away for me.
Yes, I am a pro-life Christian. But, this didn’t seem so black and white. At least not the way it was presented. The doctors had described what happens to babies who grow in a womb for months without amniotic fluid…the deformities and contusions. My own regular OB doctor (not our amazing Dr. M – the maternal-fetal medicine specialist) had advised us to induce labor, saying if it were his own wife he would not prolong the inevitable but would perform the procedure immediately. This was a man who had walked with me through the loss of the twins. Who had stroked my hair compassionately when I was confused and consumed with grief after another procedure performed from delivery complications.
I consulted Christian friends, who gathered with me around my kitchen table talking and praying. I talked with nurses who had walked through this with us. I wrestled with the image of asking my family to walk through this again, knowing the grief that we had already endured.
Could I ask Tim to look at me for four more months, knowing that I carried a baby who would die? And, poor Timothy – would this be what he thought of when he thought of pregnancy – sorrow, loss, the robbing of joy? Could our family walk through this again? Could we handle the waiting? I didn’t know what to do.
Tim was fairly quiet on the subject. So, I prayed day and night. I searched the scriptures. It was Holy Week, and I had been reading the parts leading up to Jesus’ crucifixion. I came to the verses documenting the conversation between Pontius Pilate and Jesus, and the Lord spoke the answer to my heart, as I read about Pilate washing His hands of the situation. The decision didn’t need to be in our hands. We could just leave it to Jesus. We chose to wait – to trust Him to carry us and our baby through this journey.
If you are reading this and made a different choice, whether because of medical necessity, feeling this option was the best for your family, or just not having a full understanding of the options (many doctors don’t even present the option to continue), please know that we understand how difficult it is to face this impossible situation – this choice that no parent should have to face. We know that we are all parents who loved and wanted our precious babies. Whatever the path to this point, we are now parents who have grieved the loss of our children. And there is healing in the arms of the Lord for all of our hurts.
So, what was it like – waiting with Thomas? I wish I could say that I knew I could fully embrace our time with Thomas…like my beautiful friends, Angie and Stacy and so many of you I have had the blessing of meeting. You have inspired me…to see your strength to cherish every moment of life you are given with your baby. It was before all of the wonderful organizations we have today. There was no Sufficient Grace Ministries or Now I Lay Me Down to Sleep organizations to photograph my pregnancy or the meeting of Thomas. No perinatal hospice and no Waiting With Gabriel. No String of Pearls. We were charting our own path, and it was lonely at times. I regret that I didn’t know how to do it as beautifully as some of you have, that I had doubts and fears that often overshadowed my hope.
I prayed every day that our decision to carry him was not causing him harm – that he was still alive. I prayed for a miracle, believing with all my heart that God was able, while still planning a funeral. Because of the lack of amniotic fluid, I felt little movement, so there were few indications that Thomas was still alive and well. I literally lived from ultrasound to ultrasound when I could see my sweet Thomas and know that he was still with me.
I worried about my oldest son’s grief; about all the sorrow he had endured at such a tender age (he was 4 at the time). I felt the burden of the sorrow caused in Tim’s heart from seeing his wife pregnant, knowing that the baby within my womb would die. And the grief would overwhelm us once more. The pain tore at our hearts and our marriage. We held on, but sometimes it felt like only by a thread.
I sang to Thomas and stroked my belly and talked to him. I chose an outfit. I searched online for some missing miracle answer. I consulted other doctors. Talked incessantly to Ginny (who walked courageously with me) and Dinah and others who would listen. I cried, prayed, and clung more desperately than I ever have in my life to God’s Word.
I never regretted for a moment our decision to carry sweet Thomas, for giving him a chance at life -and even more so in the moment we finally met him- but more on that in the next post. I struggled with faith; did I not have enough? If I did, would Faith and Grace have lived…would Thomas live…if I could just figure it out. And, God gave me the answers. He taught me about believing without seeing as I stumbled in the fog…hoping that I didn’t fall of the cliff before me…wondering if I did, would He catch me? The answer was yes. I might fall off the cliff, and if I did, He would catch me.
Looking back, I can see His hand carrying us through that time. But, in the moment, I couldn’t always see or feel His presence. I felt overwhelmed with the unknown. And, what I learned in the thick of that fog was that true faith wasn’t the absence of doubt or fear. It was trusting God anyway when you are most afraid and filled with doubt – when the answer isn’t what you hoped or there seems to be no answer at all. I looked to Jesus as the author and finisher of my faith, wanting desperately to do it right. And what I found is that it’s not about my ability to do it right, but about my God who is able to carry me no matter what. I have written about believing without seeing, the truth about the saying, “God doesn’t give us more than we can handle”, and what faith looks like. Click here to read more about the journey of Faith, Grace, and Thomas.
A few more excerpts from previous posts:
I couldn’t sleep that night. The tears wouldn’t stop. The pain wouldn’t subside. There was nowhere to find relief. Desperate for comfort. Desperate for hope. Just desperate, I searched the scriptures, struggling to read through my tears. “Jesus is my example,” I thought. “Show me, Lord. Show me the way to walk this path. I want to please you… I want to trust you…but I don’t want to lose another child. My heart is broken…”
The first verses I read were in Hebrews 12:2 …looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. Two truths slammed into my heart. 1. Jesus endured the cross, despising the shame. It wasn’t easy for Him. 2. He did it for the joy set before Him. There was a purpose…our salvation and His glory.
There would be joy on the other side of the suffering. Then, I looked to Luke 22:39-44 and focused for the first time on the agony of my Savior. What did He do when He was in agony? He prayed. He asked the Father three times “Father, if it is your will, take this cup away from Me”. Then He said, “nevertheless not my will, but Yours be done.” Then, an angel appeared and strengthened Him. And being in agony, He prayed more earnestly. Then His sweat became like great drops of blood falling on the ground. (verse 44) This was our Savior, our Redeemer, our King…in agony. What did He do? The more agony He felt, the harder He prayed. He poured out His requests to the Father, but inevitably trusted the Father for what was best. Faith. Trust. Abide. Humble to the Point of Laying Down His Very Life. He accomplished the task, and all the while, He kept His eyes on the prize…the “joy that was set before Him”.
Resources If you have just heard the news, and you are facing a difficult pregnancy diagnosis, or if you are waiting on the journey, Sufficient Grace Ministries has resources to support you as you walk this path:
Support for Families – Sufficient Grace Ministries
SGM Perinatal Hospice and Bereavement Services – Sufficient Grace Ministries
Books for those waiting with a difficult diagnosis – Sufficient Grace – Standing on the Sacred Ground Where Heaven Meets Earth by Kelly Gerken, I Will Carry You by Angie Smith, Waiting With Gabriel– Amy Kuebelbeck, Empty Arms – Sherokee Isle (secular book, but good practical answers for preparing) In Faithfulness, He Afflicted Me – Lynette Kraft
Please take the time to check out these resources. I know it can be hard and sometimes we think in our pain that we may not want these things. But, truly it is a time that we cannot get back. There are so many things that I regret not doing and photographs especially that I wish that I had. We would be glad to set up a perinatal hospice consultation to help you with a birth plan or send you a Dreams of You Comfort Package and other materials you may need to help prepare for meeting your baby, so please just email us if you have a need: firstname.lastname@example.org.
Text originally posted on June 25, 2009