Welcome

If you are new to our site, this blog is sort of a hodge podge of our ministry and family life, and whatever else God lays on my heart to share. The Home Page above will link you to our Sufficient Grace Ministries page. You can read more about the 501 (c) 3 non-profit organization and the outreaches of this ministry whose mission is to offer comfort and hope to grieving parents. The Blog button brings you to the page you are currently reading, featuring a variety of subjects...some ministry updates, some family news, and some biblically-based encouragement. The Walking With You page is a place for bereaved parents who have lost a baby or child to find encouragement and hope. It is an online support group created so that families would know they are not walking this path alone. On the Dreams of You Shop page, you can learn more about the products and services we offer, place an order, or sponsor a family. The Encouraging Women blog is a work in progress. There, we hope to offer biblically-based encouragement to all women. The Resource page has been newly updated with a list of resources that are helpful for grieving parents. Our blogroll is also located on this page. Thank you so much for visiting our site. Blessings to you...

Thursday, June 25, 2009

Walking With You ~ Waiting



Welcome to our second week of Walking With You. Thank you to those who joined us last week for the first steps on our journey. 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 it's 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 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 and admitted me for an amniocentesis procedure to remove the fluid from the sac and relieve the twins from it's 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, and soaked 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. And, much to the perplexed gastro-intestinal doctors dismay...gas station popcorn was the first food I kept down in weeks. And, it was wonderful.

I was released from the hospital and would 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 form. 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.

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Thomas
The news of Thomas' fatal 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. And, 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. So, 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. And, however 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 Now I Lay Me Down to Sleep organization 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. Because of the lack of amniotic fluid, I felt little movement, so there were few indications that Thomas was still alive and O.K. I prayed everyday 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 planning a funeral. 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 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 over 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 did sing to Thomas and stroke my belly and talk 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 next week.

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 no where 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".

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Resources
If you have just heard the news, and you are facing a difficult pregnancy diagnosis,or if you are waiting on the journey... here are a few resources that may be helpful to you on this journey:

Be Not Afraid ~ Difficult Pregnancy Diagnosis
String of Pearls ~ Difficult Pregnancy Diagnosis
Perinatal Hospice ~ Resources for those continuing a difficult pregnancy
Growing Through Affliction~ Support and Encouragement
Sufficient Grace~ Memory ~ making materials
Now I Lay Me Down To Sleep ~ Beautiful photographs for families experiencing loss
A Place to Remember

Books for those waiting with a difficult diagnosis -
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 send you a Dreams of You Memory Book and other materials you may need to help prepare for meeting your baby, so please just email us if you have a need: sufficientgraceministries@gmail.com.
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Prayer Request

Please pray for all the upcoming preparations for the Sufficient Grace golf outing on July 11th. And, please just cover this ministry in prayer. Personally, please pray for me as a mommy. My mommy-confidence is a little shaken lately. I had a lot of confidence as the mama of "littles", but as my "littles" are now getting big, there seems to be some unknown territory. And, I could really use some prayer in this area.
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I know this post was long, and I appreciate your willingness to endure to the end. Please link your own post and join us on this walk. And I hope you will take the time to visit, pray for and encourage the others who link with us. Please join us next Thursday on Walking With You. We will be sharing about meeting our babies. I will be announcing the winner of the Thirty-One Giveaway later today in the right sidebar, if you are checking for that.

13 comments:

Holly said...

Wow, Kelly, you went through a lot with Faith and Grace. It sounds like it was a pretty rough time. Not being able to eat, vomiting blood, being on Mag...you were one tough momma! That is odd that you were able to keep down gas station popcorn. Are you sure it was really food? lol

I imagine deciding whether to continue to term or inducing is VERY hard. This is the part of my journey that I can't relate to anybody else since my decision was made long before. I don't understand the turmoil but I know it is difficult from hearing others' stories, especially with so many doctors pushing their patients to terminate and giving them no other options or hope. There are so many resources now for parents and families traveling this road that it's hard to imagine a time when they weren't there. But you can certainly remember and it sounds like it wasn't easy. I'm sorry.

Jenilee said...

I can totally relate to your prayer request at the end of your post. I think once we figure out a few nuggets of wisdom as a mommy of "littles" as you called it :) we have one who is getting to be not so little anymore. There are moments that I look at Elayna and see a piece of the young girl she is becoming. I was just thinking at lunch how hard it is going to be to watch her make a choice on her own, make a mistake and maybe fail at something. My heart breaks just thinking about it! I want to be the best mom I can and that is overwhelming at times.

I've found that praying for every moment in the day helps. I love when God drops something special in my heart for that moment in parenting, when I don't know what to say or do. God is faithful and His strength is made perfect in our weakness. I'm so thankful for that!

Leslie said...

In regard to your prayer request for mothering your kids as they get older, I can completely relate! We have two boys, 14 and 11. Even though they are more self-sufficient now, they still need our guidance and parenting. I've worked part-time since my oldest was in 3rd grade, but I have since cut my hours even more because I feel I need to be around for these teenage years. They may no longer need diaper changes and bottles, but they need guidance in making good decisions. I also want to keep an eye on who they're hanging out with and where they are.

When all else fails, just pray and then pray some more! My neighbor and I are starting up a Moms In Touch group for 3 schools in our district. It's a group of moms and/or grandmoms who get together and pray for their children, the teachers and the school as a whole. Between the 2 of us, we'll have kids at all 3 of these schools.

I pray that God will lead you to some answers and will give you strength to not doubt yourself when you make decisions concerning your kids! Blessings to you!

Cecilia said...

I don't have a lot to say, just thank you for sharing your story. Situations like this make faith more tangible at least to me.

Shannon said...

I just got done typing up my entry and linking it. I'm not in a good place emotionally to really leave a comment. I appreciate you sharing your story, and while it's not something we ever want anyone else to go through, it is good to know we're not alone in our grief and pain.

Joyeful said...

Kelly, I am just blown away by all you have walked through. And completely humbled by our honesty and your transparency. I know that you are reaching hurting hearts with his love.

I love you and every brave woman who has linked her post here--may Jesus' healing bathe their hearts.

Unknown said...

Kelly,
I'm sorry I didn't have time to post anything today. I didn't have time to do a post at all. I'll keep trying though.

Love ya.

Lisa said...

Kelly,

Your are a strong woman!!! I am so blessed to have found this site :) I will be posting my story later this weekend as I am ahve a busy day tomorrow so I need to ge tsome sleep.

God Bless you!

Jennifer Ross said...

I have been reading your blog for awhile now, and there is always little things that I learn about your journey. I think that is why this is so good for all of us to do.(Walking With You) Through it we may discover new or hidden feelings that we had or have now.

I checked your blog yesterday morning, and this post wasn't up yet. I got really busy, and couldn't get my post done. I'm going to work on it now, and am hoping that I will be able to link up with Mr. Linky. If I am unable, please feel free to link me up again. Thank you and God Bless.

Karen said...

Kelly,
Well, I am late again. At least I got it done. I appreciate this opportunity. I feel that it is helping with the healing process while sharing my story as well as reading the stories of others.

Thanks for being honest and open about your story. Such a difficult road to have to walk through.

Blessings to You,
Karen

Unknown said...

Thank you for your continued to work to support US. I have posted a response and hope our blogs find their way into someone's hands who is just starting on their journey.
http://graceolaobrienpang.blogspot.com/2009/06/walking-with-you.html

Danielle Holsapple said...

Kelly, thank you for doing this. I wasn't able to do part 1 but want to continue on with all of you. Thank you from the bottom of my heart for sharing your story. It gives me strength to walk through the pain again and share.
Blessings,
Danielle

Anonymous said...

Hi Kelly, I am slowly but surely catching up on this walk. I've just published my Waiting blog. Thank you for allowing me to go at this pace, and giving us a way to process what we've gone through and are continuing to go through.

You're in my thoughts and prayers.

-Crystal Theresa @ Fragments, Not Broken