Faith's story...

While this was so hard to write (and may well be hard to read, so don't feel obligated to read it unless you want to) it was also one step forward in the process of healing...

Our precious little girl...

Faith Joanna... our 10th baby...
well, our 10th live birth but our 17th baby...

Faith was diagnosed early with Trisomy 18...

backing up - this is still pretty raw...

We conceived the end of August/ very beginning of Sept -just before going out of town for our oldest son to have surgery by a urologist in another state - I remember joking with the u/s tech when our dates didn't line up with LMP and early ultrasound dating - we were camping in a tent with 9 children when I *should* have been fertile, so I knew we had conceived just before that trip... it certainly didn't happen during! It was far less expensive to stay in a campground in our tent than try to manage the cost of multiple hotel rooms near the hospital - and it was more fun for the kids (and us), which made it an adventure of sorts, even if the campground was in town and not out by a mountain lake or something truly fun and rustic...

Anyway, we were surprised but happy with the initial positive test... We were back home, son was recovering nicely from his surgery and I was feeling oh so tired and worn down... but not surprised because it had been an intense year, with my second oldest daughter having had 2 surgeries (one on each foot) the previous November and then again in January, and then my husband having had complete reconstructive surgery on one of his feet in February, which put him out of commission for some time, and left me handling homeschooling our 6 oldest (including graduating our oldest that May) as well as the 3 little ones who were not yet school age, handling barn chores, etc on my own, and then when DH had to return to work (as active duty military) he could not drive so I was his transport to and from work, doctor appointments, physical therapy, etc... not to mention nursing my little one. Then just after pig butchering (I do my own processing) it was time to plan our son's surgery trip out of state... needless to say, I'd been burning the candle at both ends, so the fatigue was not surprising... but I'd had this niggling little feeling of wondering if I might be expecting... then our 6 year old was sitting at the table drawing a picture while I was baking bread for the week - she showed me her picture and I asked her to tell me about it, "it's our family", she said, "but in my picture we have ten children, and not just nine." (I was chuckling at her use of the word "just" but her words stuck with me... out of the mouths of babes...) An hour later I gave up my resolve to wait until morning, and went and took a pregnancy test. It was faint, but clearly positive. I was happy and could not wait to tell my husband -

Not long after that initial positive, I started feeling like something wasn't quite right... hoping and praying that this didn't mean we would miscarry yet another little one... When we were far enough along that I felt we could get a good heart-view on ultrasound, I called our high-risk specialist OB and scheduled an appointment, called the base to get the insurance authorization and lab test requested for said authorization (all the things the military requires for an OB referral, I know the process well...) We were scheduled for ultrasound the following week - when we got there, my OB's nurse asked how I was feeling and I told her "I think something isn't quite right, but not sure what, to put my finger on it..." she said we would take a look at the u/s and see... the u/s went well, we saw a strongly beating heart and everything appeared normal, but that unsettled feeling did not leave...

At our next appointment I was told about a newer test, my OB knew that I have always declined any kind of testing beyond ultrasounds, because it would not change anything for us... we would never consider ending any pregnancy for any reason. However, I was encouraged to think about this test, it was designed for women who are "older" for childbearing and uses only the mother's blood, and not placental tissue or amniotic fluid... the Materniti21 test. I was told it looks at Trisomy 13, 18, and 21 (Down's syndrome). I said TJ and I would discuss it and call them back - we did talk about it and agreed that we would go ahead with the testing - that night I looked up what T13 and T18 were, because I had not heard of them, but dismissed them quickly from my mind, thinking that if we had a positive result, it would probably be for Down's Syndrome. I felt confident that while it would be difficult health-wise for our baby, I could handle Down's - I've worked with Down's children and adults over the years, and knew the heart issues that tend to come with it, but knew we could handle that as well, with good doctors... in my mind, my baby probably did have Down's, and I felt ok with that... that night I fell asleep after closing out the internet windows of information about the three Trisomy issues the test looked at. I dreamed that night that I had given birth to our baby, held baby in my arms, and then the next thing I knew I was writing an obituary... I woke up crying. As I told that dream (through tears) to my husband, I told him I wasn't sure if it was the result of reading what I had at bedtime or if it was the Lord preparing my heart for things to come... I hoped it was the reading material. In hindsight, I believe that it was the Lord, preparing my heart.

When we went in for the blood draw at my OB's, I told the nurse about my dream - she's been a friend as well as nurse, as she and my OB both cared for us during our last 2 births as well as our 7th miscarriage, between those births... she said "let's see if we can put those fears to rest".

Not quite 2 weeks later, I got a phone call. It was the day before our next scheduled ultrasound (with my high number of miscarriages, it was more of a peace-of-mind check for both the OB and me). The nurse asked me if I could talk for a moment, in a very quiet voice... I knew then that she had news. I said "the results came back, didn't they?" she said yes, she had just gotten a call that morning. I went into my bedroom and closed the door, with instructions to my children to finish their assignments and I would be back out shortly... Once I was sitting down I asked "is it Down's? I think I can handle that..." she said "No, Amy, it's 18..." she let that sink in for a moment... the only thing I had read about Trisomy 18 was a brief synopsis that summed T18 as "always fatal" - I choked back tears and said "but that's fatal", she clarified "almost always, but not always..." she explained that she had gotten the call, then went in to speak with the OB... she said they both cried over the news and talked about it, deciding that they felt sure they knew me well enough to know I would want them to call me with the news before our appointment the next day... I told her she was right, thanked her for calling, and we hung up. I put my head back and just sobbed. Dear Lord, please don't take another baby... When I was able to pull myself together, I called my husband at work "I need you. Please can you come home right now?" I sobbed into the phone... he had gotten doctor's clearance to start driving again two months before... he asked if I was ok and I said No, then hung up before starting to sob again...

I didn't leave my room again until that evening - so thankful that my oldest (17) was able to manage things while I wasn't able to be mom for those hours....

When TJ got home he greeted the kids and then came in to our bedroom. One look at me and he locked the door, sat beside me on the bed and took my hand in his, waiting... I cried out the phone call story to him, then we held each other and cried... and cried some more. When we were able to recollect ourselves, he went out to check on the kids and to put something simple together for the kids for supper - I wasn't able to think and supper was the last thing on my mind at the moment... WHile he fed the kids, he explained that I wasn't feeling well and that I was probably going to spend the evening in bed - he paved the way for me to take some time to process, to look up on the internet and read more about Trisomy 18, and to get myself in check. After he tucked little ones in bed for the evening, we called a family conference with our 4 eldest children, feeling the need to be open with them up front so that they would understand what we were dealing with. They are all old enough to understand, and we felt it was the right way to handle things... Through a tear filled evening, we discussed what I had learned after further reading, answered their many questions as honestly as we could, then prayed together for our little girl...

Because I had such a strong feeling that something wasn't right with this pregnancy, I opted for the gender test that was available with the trisomy test - I had to call the nurse back that afternoon to ask her if we had that result as well, she said, "you have a daughter".

My husband and I spent the evening discussing a name for her, feeling strongly that we didn't want her to die without a name... we settled on Faith for her first name and decided we would choose a middle name later. We both felt a peace about her first name, and I was thankful to be able to call her by name and not just "baby" as we had done with our many other "lost pregnancies"...

(we later decided on her middle name of Joanna, because of it's meaning "God is gracious" - it is with deep peace that this was the perfect name for our precious litttle one - she was a gift of God's grace, and it has been His grace that has carried us through these past months.)

The next day we met with the OB and ultrasound technician for our follow up appointment... the ultrasound tech was so sweet, she met us at the door and said "I'm so sorry", then ushered us back so that we wouldn't have to wait in the waiting area with all of the other expectant mothers... away from curious eyes at this woman who had obviously spent much of the night crying and was fighting to keep herself in control...

The ultrasound revealed several disturbing issues right off, including an omphalocele (a membrane sack outside of the abdomen that holds organs that should have been inside the body), and a heart that didn't look quite right. About half way through the hour long ultrasound, the tech stopped, put the transducer down, put her hand on mine and said "I'm so sorry, Amy, things really don't look good. Things are concerning on a number of levels." I nodded, knowing she spoke truth... she asked if I wanted to see more, or if I wanted her to turn off the monitors, explaining she had done similar ultrasound for another family who preferred not to see, not to know... I said "no, please don't - I want to know everything. It's hard, but I want to know." she said ok, and continued on with the u/s. When we were finished, she printed some of the nice pictures for me, put them beside the u/s table and said she would go speak with the doctor while I got my belly cleaned up from all the gel... giving us a moment to collect ourselves and just breathe...

When she and our OB came in to the room to talk with us more, my OB had tears in his eyes as he said how very sorry he was to give us this news... He asked how we were feeling... DH was silent and I answered "distressed. But we believe that God is the maker and giver of life. He alone determines our number of days... we'll have to rest in that." He smiled and said he had never heard it put quite that way before, but if we chose to continue with her life that he would support us in that decision and do his best to help us through the road ahead. I knew he would never encourage us to abort, but still felt the need to state what I did... and that became our foundation for Faith's life. She was God's creation, not a mistake - He made her life and He knew all of this long before we did, so we would trust in Him for the outcome, and cry out to Him for the grace to get through what was to come, whatever that may be... I really struggled with the thought that my baby was probably going to die, and I hadn't even met her yet!

The following months brought many, many more ultrasounds and medical appointments - we met with a pediatric cardiologist who scheduled us for a 2-way heart echo along with ultrasound, also, and were sad to learn that her heart was so complex, that even with all of his years in practice, he had only seen anything remotely similar twice. Nothing could be done. We had gone in with hope, thinking how fortunate it was that in our day and age, technology and all of the advances, we surely could have her heart operated on to help her live... We left with the understanding that not only would her heart not survive a normal/ vaginal birth, indeed, it would most likely kill her before she was even out, but that her heart and lungs, as a "block" would not be able to function. She also had an esophogael atresia so that her esopagus and stomach did not connect - it was actually not possible for any of the ultrasound techs to even locate her stomach, so it was never known if she even had one. All issues combined to say that she would not survive a normal birth, but we could opt for a c-section in the hopes that she might be born alive... however, with her inability to swallow, I had such excessive amniotic fluid that it was dangerous for both her and me... there were no guarantees, of course, except that she would not live long... her conditions combined made her inoperable, and so we were faced with choosing end of life care... did we want "comfort care" or "tertiary care"? Tertiary would only work if they removed her from us immediately at birth and took her to surgery to try to put in breathing tubes and a feeding tube etc, but with her weakened state there was no guarantee that she would even wake up from the anesthesia...

I'm not exactly sure when, but sometime during the course of the pregnancy, I came to a point of relative peace... we bathed our pregnancy with prayer, trusting that the Lord has a reason for this... after so many miscarriages, we had long ago come to the deeply held belief that we don't need to be able to understand the whys of God's ways, and what a tremendous relief that brought... we can still rest in Him, still trust in Him that He has a purpose for allowing these hard things in our lives... He does not cause these things, but He does allow them.

A friend asked me a couple of months ago if I felt any anger, I had to think about that, because I didn't think I was feeling angry at all, but wanted to be sure I could answer completely honestly... in the end, my answer was "How could I be angry with God for giving me this precious gift of our daughter?" He gave us her life, for however long that may be, and He would give her His healing at the time of His choosing... No, I could not feel anger about this. Grief, yes... tears, many... trust, unconditionally. I know her life is/ was not a mistake, she had a purpose to live out, though I may or may not ever know what that purpose was or is... My job was to love her, to hold her and protect her for the life time she would be given with us... to cherish her and to value her life for the gift that it is.

At 26 weeks I heard about a young woman in our small church whose baby needed to be delivered at 28 weeks due to placental deterioration. Her little girl still lives and is growing and I understand is doing well - I had not realized that she was even expecting until the day before, she has such a tiny frame and I usually only saw her sitting at church, so I hadn't noticed her growing belly... we began to pray for her, and a niggling thought kept coming in to my head that we probably would not get past 28 weeks ourselves...

At 28 weeks, we were scheduled for an ultrasound, but I received a phone call that morning asking me to reschedule because my doctor had another high-risk patient who needed emergency surgery, and the doc would be in surgery with her all afternoon. We rescheduuled for the following Monday, and as we hung up, I prayed for the mama and baby going in that afternoon... Lord, please bring that baby out alive...

28 weeks and 2 days we went in for the rescheduled ultrasound. The u/s tech took one look at me and exclaimed "oh wow! you're..." and she stopped... realizing what she was about to blurt out, I suspect... I was getting so large in the belly that it was beyond painful - every movement hurt - I was bigger at that point than I have ever been with another pregnancy, so I finished the statement for her "huge, I know..." we smiled a sad smile together, both knowing it was due to Faith's inability to use any of the amniotic fluid, and yet her kidneys were healthy and very functional, as she continued to add to that fluid every day... That ultrasound was difficult, both for me and for the tech - there was so much excessive fluid that the tech was having difficulty getting a clear picture, so she had me move to lay on my side so that she could try to get a clearer picture of our little one. When we were finally finished with that u/s, we were ushered in to another room to wait for my doctor to come in and speak with us. When he came in, he sat quietly for a moment after greeting us, collecting his thoughts and finding a starting place for our talk, while we waited... with tears in his eyes he said that our little one faced serious concerns... and that while it was his job to help us protect her and to learn as much as possible about the many health issues she had, it was also his job to help protect me... and we had reached a point that he was very concerned... in the end, we were asked to make a decision, knowing that Faith's outcome would change little either way, but we needed to choose a date for her to be born. Soon. If we waited too long, she could be stillborn or we could risk my water breaking at home which would be deadly for her and dangerous for me, adding in the concern for how far we are from the hospital and the rugged (understatement) road that leads to our home once you leave the paved road... we're a ways out... we were given time to decide and asked to call back in a day or so with our decision.

We went home, cried and prayed, and talked over the calendar... we called a friend who had offered to sit with the rest of the kids at the hospital while we would be in the operating room, and then made our decision for that Thursday. Arrangements were made by our doctor and his nurse, the way paved for things to go as smoothly as possible, and an appointment scheduled for us to meet with the NICU doctor the day before her birth. Then we did what was needed to prepare at home, I packed my hospital bag, did laundry and packed away my maternity clothes, bringing out non-maternity and non-nursing clothes that had been packed away for so long... put together a meal plan, reorganized the freezer and brought up a week's worth of pre-made meals to thaw for Dh and my oldest to use for the week following... It helped to keep my hands and mind busy, and I could momentarily turn off the emotions that were running rampant through my mind and heart...

It surprised me how painful it was to put aside the box of nursing clothes... knowing I would not have a need for them, even if she should surprise us all and live - without a stomach, she would have to be tube fed, if she could survive the surgery. With sadness, I put that box aside and brought out my other things.

That night it was hard to sleep, and I think I cried more than I breathed... and prayed more than I cried... "Lord, I know it's not too late for you to work a miracle... but Your will be done..." that was a hard prayer that I spent the entire pregnancy learning... "Not my will but Yours, Lord... thank you that I don't have to understand in order to trust... thank you for carrying us through this, no matter what the outcome may be... Please, if it's in Your will, please let us meet her while she is still alive..." How badly I wanted to pray and tell God exactly what to do to fix everything... how I wanted to be in control and to make everything right... but that's just not how it works, and that was hard accepting... So I learned to pray for His will regardless - a harder prayer to pray and truly mean is hard to imagine...

Morning came, my husband and the kids woke up, had breakfast while I showered (I wasn't supposed to eat before the surgery, not that I could have swallowed anything anyway) and then when my husband came to check on me I asked "I don't suppose I could change my mind now, could I? Wait a couple more weeks and see how she does?" He just held me... we both knew the answer...

At the hospital, we met my friend and her teen daughter who came to help with our little ones, so that our oldest would not need to be "in charge" and could just be there to meet her baby sister and deal with her grief. I felt it would be too much to ask her to take charge of younger siblings on that day... anyway, we met and rode the elevator up together... the 11 of us and 2 of them. We were met at the door by a nurse and ushered to the L&D room where we would have time to hold and love on our little Faith and where I would spend the night. Thoughtfully, they put me at the end of a hallway, tucked in to the corner of the wing, where there wasn't much traffic and away from the birthing rooms that held mamas and their live babies. We got the kids settled, met our nurse (a wonderful and sweet woman), and when I could put it off no longer, I went in to the bathroom and put on the hospital gown and robe. That moment the full weight of what was coming hit me and I felt like I could crawl under the floor and just... hide. I stayed and cried for a bit, then washed my face and prayed for grace to get through what was coming... "Oh Lord, I can't do this alone..."

Back in the room, we went through the paperwork for the hospital, and when it was time, I walked back to the OR with husband on one side and nurse on the other... The OR staff were wonderful, quietly compassionate and supportive. The c-section went smoothly, and we were granted our prayed for miracle of meeting our precious daughter alive. They used a suction device to take out much of the amniotic fluid before cutting me open all the way, filling 3 full containers of excess fluid before continuing with the surgery, and bringing out our tiny little girl... I was surprised at how purple she was... how tiny... I've never seen a baby so very small... she had dark, dark hair like her Daddy, which was also surprising, since all of our others were peach-fuzzed at birth...

She gave the tiniest of cries and then was silent... I asked if she was alive, holding my breath while waiting for their answer... they checked her heart with the smallest stethoscope I've ever seen, and confirmed that she was alive, her heart was beating at about 40 beats per minute. I asked if she could have oxygen but was gently told it would not make a difference. The nurses cleaned her off, wrapped her in a little towel, handed her to Daddy with gentle hands, who cradled her for a moment before placing her on my chest for me to hold. So tiny, so still...

When the doctor was done sewing me up and all that needs to be done after a c-section, we were given a few moments to just hold her and breathe... and then we were taken back to the L&D room where the children were waiting to meet their tiny new baby sister. Once the bed was rolled in to place and wheels locked, the kids gathered around my bed and looked at their little sister, unsure how to deal with this tiny, purple little baby... When TJ and I assured them it was ok to touch her, they relaxed some and eventually took turns holding her and kissing her, crying over her smallness and stillness. Two hours we were given, to love on her while she was with us. I had the nurse check to see if her heart was still beating a few times, because her breathing was so shallow I couldn't tell if she was still with us or not. Each time, she gently checked, giving me a nod. As her heart slowed, her color deepened and her form became more limp. At one moment, I felt a shift of a sort in her body, and asked the nurse to check again - she was unable to find Faith's heartbeat, so went to get the doc to check. He listened for a long moment, every one of us holding our breath, then he laid his hand on mine and said "she is gone. I'm so sorry." He sat with us a moment longer before leaving the room, allowing us as much time as we needed. The nurse assured me that there was no hurry, and we could keep her as long as we wanted... she stepped out of the room for a moment, and each of the kids came and kissed our little one goodbye.

The nurse met my husband and children at the door to our room before they left, with teddy bears for each of the kids - a gift from the hospital for siblings whose baby would never go home with them... a tender and sweet gesture. Then they filed out of the room and went home to be fed, comforted, and tucked in for the night. I stayed in the bed, still unable to feel or move my legs from the spinal drip given for the c-section, and held my sweet baby's body through the night, crying, praying, talking to her and loving her... Thanking the Lord for the gift of those two hours, telling him how I wish we could have had longer... thanking Him for healing her frail body... and just holding her, knowing I would never again be able to hold her in this life. One of the most beautiful and heartbreaking nights of my life. I know she was no longer there with me, it was only the empty shell of her body that I held, but it was comforting in a strange way, to hold her still form for a while longer...

My husband wanted to come back to the hospital that evening, and I wished he could be there with me as well, but we also both knew that he was needed at home by the children, so he stayed with them... then came back to the hospital the next morning alone. We held her more, and took some pictures for keepsakes. The funeral home person came that afternoon, but I couldn't speak to the gal, and certainly could not hand my baby to her, so I handed Faith to my husband instead and he held her for another moment before placing her in the hands of the gal that came to take her to the funeral home. I sat in the bed and sobbed, the nurse beside me and crying with me... When the gal left, the nurse stepped out and DH and I just held each other and cried... when we were able to stop the tears, I put my things together in my bag, put on my shoes, and we left (the discharge things had been taken care of that morning, when I said that I would like to go home that day).

It's now 9 days after her death. Some days are just really hard and I cry a lot... other days are not quite as hard and I'm trying to get back to doing some of what I normally do in the house and for my family.

On the way home from the hospital, we stopped at Target to print pictures. We knew we would want them, so took computer and camera cord and thumb drive so that we could do that... stopped at the pharmacy to fill pain medicine prescriptions, and then went home. It's been a painful 9 days, but I wouldn't have expected it to not be... Some moments I feel overwhelmed with grief and others I think we'll be ok, it's just going to take time to get there... Many nights I wake in the wee hours and think about her, pray and cry... sleep isn't easy, but it will get better. I've spent some time writing, putting pictures on my blog, looking through the pictures we took, and have been working on a slideshow with a very special song for a memorial service we are starting to plan... it won't be anything fancy, but something to honor her memory...

This has been a hard journey to walk.

I don't know why the Lord chose us to walk this path...

I don't know why our precious little one had to have so many health problems, to have so many things wrong with her tiny body.

I don't know how long we will grieve, but I know we will never forget.

I do know that my God does not make mistakes...

I do know that Faith was a gift, and I am so thankful for her life and what we were given to have with her...

I love my baby girl, and she will always have a very special place in my heart - she will never be far from my mind...

I do know that even with all that we don't know, my God DOES... He knows, He understands... He lost a child to death, too, when Jesus went to the cross to take the punishment of death for our sins... for my sins... His Son rose again, conquering death. My daughter, though she won't rise again in this earth, has life anew also. She has been given the divine gift of complete healing, and she lives in the presence of my Lord and Savior. I will get to see her again someday, and we will praise the Lord together, at His feet, in His good time...

Until then, we continue to work through our grief. Missing our sweet baby, but with the knowledge that we will see her again... some day.

I praise the Lord in my heartache... I praise Him for His mighty works - the gift of her life, the gift of her healing, the gift of hope for someday...

When it hurts too much to praise, I lift my broken heart to Him, and know that the tears are healing as well, and He uses even those for our good and our healing.

Thank you so much, those who prayed with us through this difficult journey, who continue to offer love and prayer as we grieve, and eventually as we begin to heal... Your loving support means so much, and you are very much appreciated - thank you.