Hope in the Fog

Fog is strange…every morning over the last few days there has been a dense fog as we woke. You can see, but not very far. There is light and at times extremely bright…it can almost blind you. And often times its grey and ominous. As you look ahead it looks so dense that it can be frighting…it causes you to pause…slow down…but as you approach that dense area it suddenly becomes clear. Life lately feels like that, especially now…

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Mason and I return to work this week…I wouldn’t say back to normal, because life will never be back to what it once was. But we’re looking forward to approaching our work lives with fresh eyes and new perspectives…we’re ready to get back to our new normal.

Over the weekend, our foggy path seemed to have shifted some after doing additional research on my pregnancy history. I posted our story on a uterine anomaly support website in hopes to find other women who may have had a similar experience to me. Several women responded and shared their stories. Many began recommending that I look into a special type of cervical cerclage called a transabdominal cerclage (TAC). There are only about 100 doctors in the country that will perform these and there are only three doctors that actually specialize in this procedure. With one of those three doctors in hand based in Chicago I pulled him up online, found his email address, and wrote him an email on Saturday morning sharing our story, my pregnancy history, and asked for his thoughts…within two hours he responded…

His email took my breath away and brought me to tears. His confidence in diagnosing my case within minutes was encouraging, yet heartbreaking at the same time. Could this all have been prevented? I don’t dare dwell on that reality, but focus on hope…

Dear Ms. John,

I am sorry to hear of your preterm delivery and subsequent loss and am sure these were very difficult for you and your entire family.

From your history, there is no doubt that you have an incompetent cervix (IC) as there is virtually no other way you could present with your cervix 4 cm dilated at 22 weeks in your second pregnancy without funneling from an IC.  I suspect IC was also the cause of your extreme preterm 1st delivery as well but your cervical support at that time allowed you to get further in pregnancy.  Once you have had a delivery of any kind, it is not uncommon to have the same pattern occur earlier in your next pregnancy.  While you have a bicornuate uterus (a common uterine anomaly), a bicornuate uterus does not result in second trimester losses so this is clearly IC.

Without treatment, you are likely to have a similar pattern of cervical change and loss in any subsequent pregnancies.  You have two basic treatment options, a transvaginal cerclage (TVC) as your doctor recommended or a transabdominal cerclage (TAC) and they are very different.  The TVC is placed around 12 weeks, generally requires bed rest, allows you to have a vaginal delivery, results in living children approximately 75% of the time but with a high rate of preterm delivery often with long and risky NICU stays as you previously experienced.

The TAC is easily placed prior to pregnancy as an outpatient, does not need bed rest, requires a C-section (you need one regardless) but virtually assures you a term delivery (> 36 weeks).  I have placed TACs in many women with anomalies of the uterus and they respond just like women with normal uterine configurations with IC. Additionally, you simply leave the TAC in place at the time of the C-section and it will work just as well in any subsequent pregnancies.  I am currently placing over 200 TACs per year in women with histories like yours.

I am happy to discuss your situation with you on the phone to answer all of your questions and make your options clear.  You can arrange that by contacting my assistant Gina Williams at 773-702-6127 and she can find a mutually convenient time.  I look forward to speaking with you.  Good luck.

A.F. Haney

We ask for your prayers.

Specifically as we meet with Dr. Haney. We have a scheduled phone consult with him on Thursday morning. We pray for wisdom for the doctor as he assesses my history and we pray for discernment for us. xo

Small Answers

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I had my consultation with Women’s Institute – Maternal and Fetal Medicine today. It was an appointment we hoped would bring some clarity and answer some of the “why’s”…it did.

It was also an appointment that allowed us to talk through what other medical considerations would be added to our “plan” regarding monitoring and preventing preterm complications of any future pregnancies should we decide to try again…there were a few.

Mason and I knew going in that we wouldn’t be handed a silver bullet. Our expectations were realistic. We knew that there will always be a risk of an early deliver…how early? We will never know. We prayed that we’d walk out encouraged…we did. But also knew this wouldn’t make our decision any easier…it doesn’t.

I have a follow-up appointment with my primary OB next week and expect some additional tests to be performed over the next weeks/months to ensure we’re not missing anything else that may have gone undiagnosed or not considered…

My dad shared the above verse as he was helping me pull together some medically specific questions in preparation for my appointment. Clearly, I take after him in our need to read and pour over information…but it was this scripture that puts into perspective that as much as we want to know and understand, our trust is ultimately in the LORD – not medicine, doctors, statistics, or any earthly knowledge.

We ask for continued prayers over the next several months as we pray, process, and make decisions regarding the future of our family. xo

Ministering to My Heart

Some have asked how we’ve been spending our days. For one it seems as though we do manage to fill them up. But its all very purposeful time and I have been very thoughtful around taking care of myself. We did manage to take a trip up to Cape Cod to truly “get away”. It was cathartic and necessary. Now that we’re back home, Mason and I like to make it to the gym (aka therapy session) a few days a week. Finn is still attending school twice a week in the morning which he loves and gives us some uninterrupted time together. Whether its at Starbucks where I can write ‘thank yous’ or I’m sticking my nose in a book. We are also working through some projects in and around the house that have been lingering.

Each day I try to view the day as a gift and find ways to minister to my heart. Where I turn to the most has been scripture, music, and books. My father-in-law had shared with us the below song/video “It Is Well” (Live) by Kristene DiMarco. The night he shared it, Mason and I just sat there in our living room crying our eyes out! It’s the kind of song that cleanses the soul. It resonates so much with me because its not that I want to just believe “it is well”, I know it deep in my gut. The words of this song and and her voice that goes from so soft and gentle to guttural…it’s amazing. I feel like her entire album ‘Mighty’ was written just for me. I can’t really put it into words, but every time I listen to it brings healing and draws me ever closer to Jesus.

I also wanted to share two books that friends had given to us that has also brought healing…both are scripturally sound. I’m still working through the second one by MacArthur since that one is much heavier, but both bring peace and comfort. I would say too that the second book is not just for those who personally lost a child but anyone who has faced this reality along side us.

Hold You and Keep You

I’ve been trying to write down some of the tugging my heart has been feeling as I continue to grapple with the death our baby girl. And bear with me, because it’s the kind of heart tugs that I know will bring good

As we now walk this journey, I can’t ignore how my eyes have been opened to the all too common reality of miscarriage and stillbirth and how we as a society still haven’t figured out how to best deal with it. Many friends and even family have since shared their own losses and journey of grief. Mind you, in most instances, its shared discreetly and privately. And through tears welling in their eyes, these same women then say but my loss “doesn’t even compare” to your loss. Though I appreciate the sentiment, but that my dear friends, couldn’t be further from the truth.

Yes, I get it, it’s nearly impossible to try to put yourselves in our shoes. I couldn’t do that when our own friends went through unimaginable losses. But if there is one thing that I’ve taken away from each and every story is that not one life…not one…is any less precious; regardless if the baby lived 6 weeks, 12 weeks, 22 weeks or 40 weeks. It is a life that God created and intended to be lived…period. I do realize that yes, we knew our Elodie. We got to hold her and stroke her face. We could call her by name, but from where I sit today we are the ones that have been blessed.

We’ve been blessed, because we can openingly and publicly grieve our daughter. It’s absolutely healthy and expected that we have a memorial service for her. It’s ‘OK’ that we take time off work to grieve and spend time with our family. I have freedom to “grieve well”. I can cling to my Heavenly Father through every messy turn. Why is my pain validated, while that mom who loses a baby at 12 weeks has to “move on” and “get over it”? Why are any of those other babies any less treasured? The truth of the matter is that they’re not.

My lovely sisters, my loss is not anymore painful then the one you too carry. The difference is that society tells you to hush now, keep that to yourself. There may even be a sense of shame or guilt…why burden others with this loss when they didn’t even know you were pregnant? And the irony to all if this is that 1 in 4 women will lose a child to miscarriage or stillbirth. If there is one thing I see the Lord tugging on my heart is that as a community of women and as a church body, we need to be meeting young families in the middle of this battlefield. How can we give mothers (and fathers) open space to grieve the children they will never know? How do we help society deal with this head-on vs. sweeping it under the rug. I don’t know what it looks like, but my heart is open and I’m listening.

Wrestling with Grief

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Over the course of several weeks since losing Elodie, I’ve heard this saying…”grieve well”…It’s a term that I appreciate since it almost gives you permission to grieve in any way that is perceived as good or healthy. The statement does leave you with a nagging confusion of how DO you grieve well. What does that actually look like? Is it simply just being honest with those around you? Maybe so…

Am I grieving well when I actually say out-loud that I’m beyond pissed off and scream at God for taking Elodie. Or when I share with a friend that I’m struggling with guilt, the “what if’s…” and all the scenarios that may have changed her outcome. When I admit that I joined a gym so that I can rid of any remaining baby bump, because the pain of an empty womb is too much to bear at times. That I wanted to throw all my maternity clothes in the trash. That I want to scream at the mom in line at the grocery store that popping out another baby is not just an ordinary feat, but extraordinary and that she has NO IDEA?!

My mom’s cousin shared the below with me just the other day…and the words met me right where I am as I wrestle and sort through what grief really is (thanks MJ)…

Sometimes you find yourself in the middle of a season where there is beauty and heartache at the same time. You’re fully aware of God’s nearness, yet you are constantly having to lay down questions, doubts and pain. If you’re honest and real- which we absolutely have to be with God- you have some really intense conversations with Him. One thing I’ve realized tho, is that asking why and remaining there only brings more questions- but worshipping and trusting Him brings breakthrough. It might not be this big goosebump and immediate joy kind of breakthrough- but it’s a breaking through of His spirit through the walls of offense and deep disappointment. The pages of my journal might contain majorly honest thoughts and concerns to the Lord- but somehow through it all He meets me here and gives me a peace that I cannot explain. As I’ve been walking through this season with my sister losing her sweet baby, still born at 7 months- I’ve come to learn more and more that Religious Christianese terms or phrases don’t help- they actually shut someone down. But true emotion and walking through the valley with someone in this place helps. Waiting on the Holy Spirit, worshipping while tears are running down your face, surrendering your questions and fears, letting go of offenses, and waiting for Him to meet you here- that’s what helps- so…here I am Lord–waiting.

Posted by Kari Jobe on Tuesday, October 20, 2015

If at the end of every emotion tied to grief leads me to cry out Abba Father and brings me closer to Him,  then YES “grieve well”…through tears, anger, joy and laughter, escaping the ordinary, wanting to be changed and never looking back, and realizing that He does make all things new even when we may not fully understand what is happening when its all tied to eternity…

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Remembering Elodie

“And when Jesus came to the ruler’s house and saw the flute players and the crowd making a commotion, he said, ‘Go away, for the girl is not dead but sleeping.” – Matthew 9:24

When Elodie passed, there were things you never want to do when it comes to planning such things for your child. We decided that we wanted to have a memorial service for her. Something simple, yet beautiful. Our church was incredibly supportive and met us where we needed them the most.

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We planned out the order of service with our pastors. We selected music and finalized the homily. Two things that weighed on my heart was that I wanted something special for the children in our family, including Finn. Our three nephews and three young cousins took the death of Elodie so very hard and we wanted special time carved out during her memorial to minister to their little hearts. I also wanted to give a small gift to those who came, so we bought lily-of-the-valley pips and placed them in small burlap bags. They can be planted in the fall and they’ll bloom in the spring in remembrance of our sweet girl.

We sang ‘You Gave Your Life Away’ by Paul Baloche and ‘It Is Well With My Soul’ by Horatio Spafford. The story behind the classic hymn (‘It Is Well’) can be found here…these words spoke volumes to our hearts. Dave Huber gave the homily. He spoke from Romans 8.

Romans 8:28-29 is scripture that I’ve been clinging to and find comfort from…

“And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers.”

This verse continues to show-up in my life. A dear friend sent me a book titled, “Inheritance of Tears” by Jessalyn Hutto…the below pages sum up this verse in such a way that I couldn’t explain it better myself…in reference to Romans 8:28-29…
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These aren’t empty platitudes, but truth and hope only Christ can bring.
The one part of the memorial that forever changed me was hearing my love, the father of my children, speak on behalf of Elodie. Mason’s reflection on her short life, his fresh understanding of God’s goodness, and his public affirmation of his love for me and Finn  allowed me to see how much the Lord truly is carrying us through this time of suffering. Mason has always been a man who can eloquently express his heart which I have taken for granted. He’s been, undeniably, hand selected for me for such a time as this and couldn’t imagine walking this life without him. xo

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Life After Elodie

Today marks two weeks since our lives were forever changed. It feels like time have stood still for two weeks. Thinking back to that Thursday, it feels like a lifetime away, but its been just a couple weeks…I was kept overnight after delivering Elodie for observation. Since I had a prior c-section with Finn they wanted to ensure I was stable before sending me home. I couldn’t wait to get out of there…

The attending doctor came by again to check me and he indicated that I had a high white blood cell count when I was admitted and wanted to check my levels in the morning…My primary doctor (who wasn’t on-call at the time) came by to check-in on me. He was so gracious and expressed his shock about what happened. I had just seen him that Monday and on paper, things couldn’t have looked better. He asked that I see him in a week (which was this past Tuesday).

When I was still admitted, they performed a pathology screening of the placenta because of the high white blood cell count and my doctor confirmed this past Tuesday that there was an infection that caused inflammation of the placenta and the amniotic sac. Because they aren’t able to identify the source of the infection and I wasn’t showing any outward signs (fever, chills, aches, etc.) – they can’t definitely say that this is what caused me to start labor. But it very well could be the cause, in combination, with my uterine anomaly…perfect storm? Now knowing this, my doctor would like for me to be seen by a specialist. He also would like them to weigh-in on what this means for future pregnancies. His opinion (emotions aside) that there shouldn’t be any reason for us to try again…as much as we find this to be “encouraging”, we are no where near a place where making a decision around another pregnancy is something we can even fathom right now. But for now, the door is slightly ajar.

Some may think, take your time…why all the doctor visits and tests? Part of the grieving process is obviously to grieve our Elodie, but we are also faced with the potential grief of not carrying another child of our own. I’d rather know all the facts now, so we can prayfully ask the Lord to guide our next steps…is it to conceive and try to carry another child? Is it surrogacy? Adoption? Our hearts ache for our loss for Elodie, but it also aches for our desire to expand our family…for Finn to have a sister or brother.

My heart sinks thinking about Finn losing his sister. He was so excited! He would watch the Daniel Tiger episodes about him getting a new baby sister (over and over again). He may not understand all the things we understand of losing Elodie, but he knows in his own way. He knows Mommy doesn’t have a baby in her belly anymore and that “she came out”. We talk to him daily about Elodie going to Heaven and that she lives with Jesus. And that Mommy and Daddy are sad. He watches as tears fall and he’ll grab my face and say “Mommy, I love you!” I reassure him that Mommy is sad because I miss Elodie, but YOU bring joy to my life. He also has been very clingy. Ever since his visit to the hospital, he rarely lets anyone else do things for him and insists it be Mommy. Life has changed for all of us, including our almost 3 year old! I pray at night that he gets glimpses of heaven – that he dreams of his baby sister and that he knows that she’s ok.

Mason and I have been so fortunate that we’re eligible to take parental leave. I’ve felt guilty about it, but I know this is time that we need as a family. To take time together without distractions of work and the busy-ness of life. This is time we’ll never get back and its a gift. We’ve been so blessed by the outpouring of support from family, friends, coworkers, and neighbors…cards, texts, emails, meals and care packages from so many. I know Elodie’s life has impacted so many, I know her story is not over and that her life is being used! Thank you Jesus! xo

Life Before and After Elodie – Part III

Getting Elodie’s story down has been much more difficult to write than expected, so please forgive the multiple “parts” as I digest and process her story…if you want to start from the beginning please read Part I and II here…

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Once the epidural was placed, I had time to mentally focus on what was happening and was able to spend these moments with Mason, my sister, Danielle, my future brother-in-law, Blaine, and my dear friend Courtney. It was very quiet and somber. The doctors and nurses were in the middle of shift change and met the doctor who would ultimately deliver Elodie. He too was kind hearted and gentle. We also had several questions around whether or not we could have a neonatologist come and assess Elodie and what the chances were for her…I was even asking Courtney which funeral home she used when Bobby passed away. I shouldn’t have to ask my best friend these questions?!

They left me be for what it felt like an hour or so and they just said if I started to feel pressure or a gush of water to call them…I don’t recall what time it was but there was pressure and my heart raced…Mason held my hand and promised me that everything would be Ok. Our friend Lauren who was willing to photograph the delivery was in the room and she asked me what we wanted. I told her I just want to remember.

The doctor came and checked me and I was fully dilated, he said he didn’t want me to have to make any effort. I pushed just once and as soon as I felt her leave my body, I knew her time had come and my heart raced and tears fell. She was delivered in the sac, the doctor quickly took her out…but she was sleeping. She was so peaceful and pink and so warm. The neonatologist happened to be one of Finn’s doctors, assessed her. They cleaned her, swaddled her, and placed a hat on her head. She handed her to me and said she has a heartbeat and we just need to keep her warm.

All I could whisper to my dear daughter was that I was so sorry and that I loved her! We were able to hold and stare at her for 3 hours. Memorizing every inch of her. Her tiny lips, her chin and nose which resembled Finn. She had tiny round ears like Mason. She had my hands and feet. My heart broke. I was numb.

Mason’s parents and brother arrived shortly after her birth. My parent’s and brother were there via FaceTime. We had her baptized and prayed over her. Elodie was born at 9:21am and she died at 10:05am…44 mins…she has a birth certificate and a death certificate. Her spirit was with us and then she went with Jesus. She never felt pain. She never experienced sin. She was perfect in every way. I will miss her every minute of every day until I see her again…I still don’t know why the Lord allowed for this to happen. There are days of joy, sorrow, and absolute anger…I cling to Him. I ask Him to use Elodie’s short life and change me through this time. At night, I pray that He gives me glimpses of Heaven. My heart longs for Heaven…in my longing, I pray that while He keeps me here to make His purposes known and that her life was not in vain.

Please continue to pray for us. Pray for our hearts as we grieve our daughter. Please also pray for our future family. We are beginning to grieve that the door for additional children through natural steps may be closing. Lift up our doctors as there will be follow-up appointments, tests, and more questions. We grieve in more than one way and need your prayers. xo

Life Before and After Elodie – Part II

If you’re just catching up, you can read Part I of our story here…This is the story of our daughter, Elodie Mason, born too soon…

As we made our way to L&D, I knew deep down that we wouldn’t be leaving. The contractions were 3-4 min apart and there were other signs that this was not going to end well. I was praying that the Lord would prove me wrong and stop the contractions and that he would give her more time…

The sweetest nurse met us in the room where I would ultimately deliver. She got me hooked to monitors and asked the standard gazillion questions. Sweet Elodie was moving like crazy and the contractions were indeed real at 3-4 min apart. She answered my questions and prepared all the things she knew the doctor would need.

Mason stepped out of the room and the doctor came in shortly after he walked out, she immediately did an ultrasound and was very quiet. She didn’t say anything until I asked her what she saw…she said she could see that the bag of waters were exposed and that I was dilated. She wanted to check me to see by how much…as soon as she checked me, she said the bag of water was right there and that I was already 4 cm…she then said, “I’m so sorry but you will inevitably deliver.” I burst into tears and Mason walked back into the room. The look on his face when he saw me was horrifying…he knew.

I wasn’t able to fully process what the doctor was saying, but she was incredibly sweet and she sat there with me, held my hands and told me how sorry she was. She answered all my crazy question…”Can’t I just be bed ridden for weeks to keep her in there?” I also knew that the only way anything would change what was happening would be to stop my contractions, but I knew they weren’t going to. They started an IV to hydrate me and also medication me to try to stop them (they even gave me two doses) – they were going to give me demerol, but the doctor came back shortly after submitting the order and asked if I’d prefer an epidural. She said that the demerol would make me loopy, but she wanted me to be present during the delivery so I could remember…

The contractions we horrendous, but then I would feel my sweet girl move and kick. But I needed relief…the pain in my heart and the contractions were too much to bear. My sister and her fiancé came right over and at this time it was around 6:30am…Mind you we were just one week away from their wedding! It was just all too much to take in. All I could say to her was, “I’m so sorry!” I didn’t want to ruin or impact the happiest day of her life with what I knew was about to happen. She asked me what she could do and the first thing I thought of was that I needed to remember. I asked her to call our friend who is a photographer to come and capture Elodie’s birth and every inch of her so I could remember…her lips and cheeks and feet and ears…and I’m so, so, SO happy we did that and that she was willing be there for us. These are photos that I will cherish my entire life until I see her again…

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Life Before and After Elodie – Part I

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Well, here we go…I used to maintain a blog quite regularly back before 2012. Before a career change, a new son (born at ~29 weeks), and life in general became well…life and writing a blog was a luxury…

My world was recently rocked beyond anything imaginable and realized a blog for me is no longer a luxury but a lifeline for my heart. So here we are and I’m glad you’re here…

So who is Elodie, you may be wondering? Elodie Mason John is my daughter who was growing in my womb one day and the next she was gone. She was 21 weeks and 6 days old when the nightmare began. She was kicking and moving until I “inevitably delivered”.

My body is not like other mom’s. I was born with a bicornuate uterus or a “heart” shaped uterus. We became aware of this abnormality when I went into labor with our son nearly 3 years ago when he was 28 weeks and 5 days old. We saw several specialists before we even attempted to think of another child. After a MRI, several ultrasounds, and 2nd and 3rd opinions. We were told that having another child would be just fine. That I would be monitored more closely and that I would take weekly P17 progesterone shots to head off any labor.  I was told that since we already had a “viable” pregnancy that the next child should make it to it least 28 weeks if not later without the weekly shots and that the shots would give us an even greater chance to go full-term (37 weeks). However, the worse case scenario became our reality on the morning of September 24th…

I started to become increasingly uncomfortable that week. Braxton Hicks started. Mostly the same time in the evening. However, the day of the 23rd, I noticed these painless contractions became more frequent. That evening I fell asleep easily but noticed the tightening in my lower abdomen. I had my weekly check-up at the doctors on that Monday with an ultrasound to check my cervix and my weekly progesterone injection. All looked well. The doctor was pleased. I even had mention the Braxton Hicks and he was not concerned and said to watch them and if they became painful to call right away. Well, that was about 1:45am on the 24th, when I woke-up quite uncomfortable. I even drew a bath to see if that would help. I managed to get some rest, but knew by 4am it had gotten worse. I woke Mason and told him that I think we needed to go in…we phoned the doctor…their  initial response was “no, its probably not labor…” but we knew  better…so we decided to go in despite their response.

We arrived at the hospital around 5am and we kept saying this felt like a movie we’ve seen before…the same smells, the same corridors as we made our way to L&D just 3 years prior, but this time it was 7 weeks too early…