So often I wish we could have altered Gods plan to favor our selfish desire to live a life here on earth with our twin boys, Cannon and Coyt. I mean, our plan was pretty amazing. We had figured out child care, double crib arrangement (in a tiny bedroom!), and car seat solutions for four kids in a Hyundai Sonata. Aleready having two boys, we were well on our way to having our own basketball team. Our plan was written into my Erin Condrin planner...in marker. It was permanent.
And then my perfect plan was permanently erased when God revealed to us a new plan. His plan. A plan to prosper us. Not to harm us. He said, "I'm going to alter your plans so that I can shine brighter than the brightest star as you cling to me for Hope, comfort, wisdom and healing. I'm going to use your boys, who belong to me, to bring people to their knees as they pray (some for the very first time). And while I'm at it, I think I'll remind you how important your marriage is so that your love will endure this hardship. And you will grow to love your husband even more."
I still from time to time think to myself that I didn't pray hard enough. Or if I would have held them longer, or thought to do skin-to-skin, could we have seen a miraculous healing take place before our eyes as their hearts began beating and they took independent breaths. We hear and read those stories all the time. I wanted that to be our story. These thoughts are not placed in my head from a mighty God who loves me. The enemy wants me to think this way- to feel guilty, as if I could have physically done something to save the lives of my children.
I've coasted for 2+ years somewhat numb to the pages of this story, waiting for the happy ending that brings a person to the "ah-ha" moment. The truth is, our story doesn't end. And my story keeps getting better as we move one day closer to holding our sweet boys again in heaven. God has brought people into our lives that I know wouldn't be here if our path was any different. The support continues, even 2 years later. My fear has always been that everyone else would move on and I'd be left to deal with this loss on my own. And every so often, that's exactly how I feel. If you're reading this and you know someone who has lost a child (even if it has been YEARS), reach out to them. I promise you, they haven't forgotten their loss. And they are comforted when they see that someone else hasn't either. I say this realizing that I too need to do a better job of this.
I was emotionally blind to the possibility of true happiness without Cannon and Coyt. You hear this ALL the time if you've spent any amount of time in the church...True happiness is there, waiting for you to reach out and accept it. True happiness isn't our families or jobs. It's not what vacation spot you're able to afford or the size of the mortgage payment you can swing with whatever salary you feel entitled to. True happiness is in Christ. And because of Christ I am truly happy with where God has us.
I write this to simply give an update on where I am on this journey called life. Some have reached out to ask if I was planning to continue my blog...I just haven't had time. And I worry too much about what to say. So this one was just my thoughts in this moment. It's not polished or organized, just plain raw.
My favorite verse right now:
I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. -John 16:33
Today is Cannon and Coyt's 1st Birthday in heaven.
It's hard to believe that it's been one year since we met our tiny twins. What an amazing year of experiencing God's love, comfort, healing, and grace. If this is your first time to read my blog, my first blog will explain that we were pregnant with twin boys in 2013, diagnosed with TTTS (Twin to Twin Transfusion Syndrome) on December 5, 2013, then three fetal surgeries plus an emergency c-section later we delivered our babies at 26 weeks gestation on January 3, 2014. Within about 36 hours we held our babies one at a time and cried as they fell asleep in our arms, only to awake in the arms of Jesus. In that moment, they were alive and whole. Happy and not hurting. They were made perfect.
While we endured a loss that no parent would anticipate, we gained so much in the process. After Cannon and Coyt went to be with Jesus, Gary and I decided immediately that we were not going to let this tragedy drive a wedge between us. Our family slogan became "we're gonna make it", and we focused on Jeremiah 29:11 "For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope. Then you will call upon Me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you search for Me with all your heart."
Although I had the endless support of family and friends, I was so fearful of living a life of brokenness. I wanted God to carry me through this, I wanted to grow closer to Him, and I wanted it to be easy.
It hasn't exactly been easy, but amazing things began to happen as we intentionally sought the will of God for our lives. We truly were 'searching for Him with all of our hearts', as the scripture says. I realized that in order to grow closer to God, I had to experience brokenness. And I learned quickly that the more I searched for Him, the less broken I was.
I really don't have the perfect words to describe what we've been through. But I can tell you that there's no place I'd rather be than in the center of God's will. Only there do we feel safe. That's where you will find a peace that surpasses all understanding.
As we celebrate their birth today, I cry because I selfishly want them here to eat cake for the first time and to open presents- even though all they would really want is the box their gifts came in! I didn't realize how hard this would be until I realized I wouldn't get the chance to say "Happy Birthday!" when they woke up this morning. Birthdays have always been fun in our home.
I wasn't sure how to celebrate their Birthday. I admitted to Gary that this is the first time I haven't been able to find joy in something. That made me bitter. I'm a pretty joyful person who doesn't hold grudges, loves people regardless of their faults (because I have plenty of my own!), and whose greatest weakness is the fear of disappointing others. But to plan a 1st birthday celebration for my babies without them here to celebrate was hard to find joyful.
Through my husband's words of encouragement, I realized there is so much joy simply in the fact that they aren't living a low quality of life in this broken world. They are living the ultimate life in heaven with our savior. In that, I do find joy. How we celebrate them here on earth doesn't matter. It's how we face this journey we are walking and strive to glorify God through it. There is so much joy in living a life with Christ!
As we move forward, we look back over the past year and have so much to praise God for:
- Gary was presented with an opportunity to serve as Campus Pastor for a new satellite campus at our church. We've met some amazing people who bring so much encouragement and love to our family. We've also had the opportunity to minister to others who have faced similar valleys.
- I graduated with the Award of Excellence from a CU Management School at TCU. I was determined to push through and finish strong, but I never thought I would receive such an honor!
- And...we are expecting a baby girl in February, Ruby Claire Ohmstede. This has been a very bittersweet pregnancy. One that will have a blog of its own soon. We are SO excited to welcome Ruby into this world, but I won't feel so sure of it until she arrives and I'm holding her in my arms. I truly long for that moment.
God is so good and faithful when you fully trust in Him.
I still face difficult days: baby showers, twin births, being apart from my family, planning for Ruby's arrival, etc., but overall I can truly say with confidence that I'm doing well.
We may be bent, but we're not broken. We are blessed!
The Ohmstede family is ready for summer! What a nice change of pace it will be for this full-time working Momma in the evenings and mornings! I have a new friend, Ali, who is also blogging about her journey. They lost their triplets too soon. I think we've both gotten to a point in our blogging where we aren't sure what to say now that the 'story' has been told. So here is a simple update on our life that we are blessed to live!
The boys have had an amazing school year. Our Jefferson family holds such a special place in our hearts. They stood alongside us throughout our journey and loved our entire family. It does my heart good to know our boys are in such a wonderful environment with the greatest teachers and office staff in the WFISD!
Over the past year we have seen God move in our lives like never before. He's placed some of the greatest friends we've ever had in our path. This summer we say goodbye to the Bindels. They've inspired us in many ways but mostly to boldly love the life God has given us, and never stop striving to do more for Christ. They will begin their journey to Salt Lake City in a few weeks to start a church plant. They are making huge sacrifices for their family of 5 and are stepping outside of their comfort zone to reach others for Christ. Check out their story and if you feel compelled to support them in their journey...do it! {www.journeytoslc.com}
Baseball season has been a blast, and still isn't over! It cracks me up when the little guys get up to the plate and their main goal is to see how hard they can hit the bat against home plate to 'get ready' for the swing, it's pretty adorable! Cross and Crue have been fortunate to be on the same team (fortunate for Mommy and Daddy anyway!). Cross played in his first baseball tournament with his friends and cousin, Jay. This summer he may be joining a tournament team to learn more about the game. Crue isn't all that into it just yet. I can officially say I LOVE being a baseball mom!
We had the pleasure of entertaining our Maryland family for a few days. They always bring hugs, love, and the greatest sense of humor I've ever known! We can't wait to visit them next, and introduce Cross and Crue to the great state of Maryland.
Cross and Crue turned 6 and 7 this month!! They continue to make life joyful for Gary and I. They laugh all the time and Cross has become a little jokester in the family...and I happen to think he's hilarious! We had their party at the local gymnastics sports center- first time we've actually paid for a party (usually held in the backyard or at the park) and it was definitely worth it!
We try to make weekly visits to the cemetery to clean up Cannon and Coyt's headstone and add or remove flowers and cute garden picks. Hobby Lobby has become a frequent shopping place for us, though not how I would prefer to shop. :) My sister has a friend who works with the NICU Helping Hands. She sent us two Angel gowns sewn by volunteers out of donated wedding gowns. I love that wedding gowns are typically loved so deeply by the owner and handled so delicately. What a clear picture of our love for our baby boys!
The chalkboards are written on by Cross and Crue and say, "I wish you were alive." and "We all love you."
Precious Angel Gowns
This summer I will graduate from Southwest Cuna Management School. Truthfully, I didn't think I would have the strength or motivation to finish after losing Cannon and Coyt, but as always...God had a bigger plan! SCMS is a three year school that consists of spending three summer sessions on the TCU campus and two winter sessions in Dallas. It sounds like a vacation, but trust me...it's a LOT of hard work! In between these sessions, you must develop a 3-year Strategic Business Plan for your credit union. They say it's like getting your masters in the credit union industry. I have learned so much more than I thought I would, and gained some much needed confidence! If you work in the credit union industry, and you have a passion for it, you've GOT to look into this school. They develop credit union leaders all over the US, and even internationally. Proud to be part of the graduating class of 2014, and so humbled that my employer chose to invest in me through this opportunity!
In a few weeks we will join Varcity for beach week in Panama City, Florida. The student ministry at FBC WF continues to bless us and we have loved getting to know these students. I will be jumping back in with my group of girls this week and can't wait to start pouring into their lives again as they encourage me with their abundant knowledge of the bible and love for Christ. Through the many changes in this ministry this year, one thing has remained constant - the focus remains on God and His love. Each move has clearly been bathed in prayer and God continues to be glorified!
Life is busy, fun, tiring, yet rewarding when we choose to love God first and serve Him wherever we go. Our hearts continue to mend and our love for Cannon and Coyt keeps growing, never to stop. God was great then and He is greater now. I will cling to this powerful verse, Malachi 3:6 "For I am the Lord, I change not." His promise, protection, presence, love, sacrifice and righteousness will never change. Friends, we serve a mighty God!
As life returns to its normal pace of "non-stop" with work, school and sports, I realize there is so much happiness around me that could be so easily overlooked.
It would be simple for me to sink into depression, dwelling on all that we've been through...but God didn't place me here on this earth to endure the tragedy of burying our twin boys and then give up. If that were the case, I think He would've taken me when He took Cannon and Coyt. Just like He had them here for a purpose, He still has me here for one.
I've tried to figure out what that purpose is, annnnd I still don't know. But what I do know is that we may not have a lot to live for here on this earth, but while on this earth, we must realize we have a lot to live for in eternity...and not only for ourselves. How we handle what's handed to us will impact those around us for Christ.
I want others to see where my strength comes from. And to understand that without God's strength, I would fail miserably in glorifying Him. Thats all I really want...to glorify Him.
While I do have many moments of heartbreak and weakness, God has allowed the moments of strength and perseverance to overshadow and that's what Iwant others to see.
Cause of Death
A few weeks ago we met with Cannon and Coyt's doctor to review their autopsy reports. I still haven't fully processed the many obstacles that our babies were faced with. My goodness, there were so many.
First off, the placenta wasn't fully functional from the beginning. There were several closures (especially on Coyt's side) where oxygen and nutrients was restricted. To add to the problematic placenta, Coyt only had a 40% share while Cannon had 60%.
We were basically told that the fetal surgery procedures didn't do anything for them. Their little bodies were already so sick prior to the TTTS diagnosis. In addition to all of that, the list goes on to describe some of the challenges they faced: ruptured liver, no bone marrow, severe brain damage, abnormal heart function, enlarged organs...just to name a few.
I was disappointed. From the beginning it seemed as though they never really had a chance at life. But what they did get was a chance to meet their mommy and daddy, grandparents, and aunt Layla- and to feel our deepest love for them. With all that was wrong with them, it truly was a miracle that they lived through delivery long enough for us to hold them and give them back to the one who created them. I guess I can still call them my miracle babies.
About Me
I'm doing really well.
I am surrounded by the love of my husband, and our extremely supportive family.
I am back to work full time and couldn't be more thankful for the co-workers that surround me and encourage me.
I jumped back into school and will graduate in July.
I haven't fully stepped back into ministry, but I'm getting there. I am grateful for the godly ladies that I get to walk through ministry with. I certainly miss my amazing group of girls who love the Lord and want to serve Him.
Gary and I, along with Cross and Crue, have never been closer as a family and have come to accept and enjoy our new normal. Crue told Aunt Layla that we have a family of 6. Cross talks about what he thinks Cannon and Coyt are doing in heaven. They love their baby brothers and we talk about them all the time.
Thank you for loving our family and for allowing us to keep Cannon and Coyt's memory alive. :)
Our first look at the headstone.
Cross and Crue brought the boys an
Easter basket and we read Heaven is for Real.
I can't begin to list the many thoughts and worries that went through my mind after losing Coyt and Cannon. In my 32 years, I had never experienced tragedy. I wanted to know answers to questions that I couldn't find on Google. When am I supposed to go back to work? When is it okay to laugh? To smile? To live? When will I feel whole again? And why was the answer to my prayer and the prayer of so many others "no"? They were just tiny little babies…
I was faced with a lot of anxiety in trying to figure out how to live again. I wanted to know how other mothers in my situation managed. I'm not kidding when I say I googled those things- I Google everything. I found very few scenarios that helped. The truth was, everyone's situation is different.
For at least the first four weeks, mornings were extremely hard. I would wake up in severe pain from the incision which would remind me of what my body had been through for my babies- the babies I no longer had.
But on the upside, each time I found myself in a moment of extreme weakness or pain, I would cry out to God, ultimately drawing closer to Him. Sometimes it was "God, why", or "God, I can't do this." Many times it was "Lord, I need you", and I even remember weeping as I would say "Thank you, God."
Believe it or not, in the midst of the pain and sadness, I had so much to be thankful for.
I was thankful that Cannon and Coyt had left behind a legacy of bringing so many people to their knees in prayer; including their mommy and daddy. Some had told us they had never prayed before. And some, who were known as "prayer warriors", shared that even their prayer lives had been dramatically changed.
I was thankful for the doctors and nurses we had the privilege of meeting who wanted nothing more than to save our babies, and did everything in their power to do so.
I was so very thankful for the outpouring of love in the form of prayers, meals, cards, financial support, etc.
You might think I'm crazy or wonder how in the world I could have an "attitude of gratitude" during such a trying time. 1 Thessalonians 5:18 says "give thanks in all circumstances; for this is the will of God in Christ Jesus for you."
Being grateful in a difficult time motivates you to seek out His purpose in those circumstances. And it reminds us that we aren't here to fulfill OUR will, but God's.
It's never easy to truly know what God's will is. It'd be great to receive an email from Him with a job offer that includes the job description!
Mine might look something like this:
Job Title: Mommy of Twin Boys
Duties and Responsibilities: To carry identical twin boys to 26 weeks gestation. Love them, choose the perfect names for them, feel their every movement & hiccup... But understand that they are only there for MY purpose. Endure temporary pain and suffering as you draw closer to me to find your strength. Trust me and the doctors I place in your path to guide you as I work miracles to keep these babies alive in the womb. Experience a peace and comfort like never before as I prepare you to give them back to me.
If we knew ahead of time what God's plan involved, we probably wouldn't accept the job (His will).
The small things were often the most difficult to overcome…
I had a closet FULL of maternity clothes. Gary pulled my "pre-pregnancy" clothes out of the garage so I could make the switch. It seems so trivial, but this was so hard. As I pulled each piece of clothing off of the hanger, I thought about the last time I had worn it- remembering how my baby bump had once filled it out. Some of my maternity clothes still had tags on them. I never did get to wear them. I felt so robbed of my pregnancy experience. "One day", I told myself…"one day I will wear them again".
Preparing to go back to work was nothing short of overwhelming. I'm the Executive Assistant to the President and also the HR Director at a credit union of 50 employees. I love my job and the people around me. I love listening to employees vent and helping them find solutions in difficult situations. I love serving others. But how in the world am I supposed to be their shoulder to lean on when I can't even pull myself together? When the tearful moments come for me, they come on quick and often heavy. What if it happens in the next manager's meeting, or the next staff meeting while standing in front of everyone... What if I run into a member or vendor who asks about the twins, having no clue what happened...
If work is a place that I love so dearly, then why is it so difficult for me to jump back into it? I just needed a little time. And that's okay. For me, my body had been through 5 procedures in 30 days including the emergency c-section. So physically, there was some healing and resting to be had. I had to face the hard reality that I was basically on maternity leave for 8 weeks and had no babies to take care of.
If I could give you two pieces of advice when returning to work after infant loss, it would be: First, start back slowly; half days if possible. I knew I wouldn't make it through an entire work day without a breakdown. Second, don't drive yourself to work on the first day back. I had a dear friend/co-worker offer to pick me up for the first few days. You have no idea how greatly that eased my anxious mind.
"Firsts" were extremely hard, and I believe they will continue to be- but it does get easier.
The first time I saw Dr. Lamar was difficult, but not because we didn't want to see him. It was because we knew how much he cared about our babies and our well-being that made it hard. If he wouldn't have caught the TTTS when he did, we never would have had the opportunity to hold our boys.
Receiving the first stack of EOB's from our health insurance company was hard to swallow. To see Coyt and Cannon's name listed with the hundreds of thousands of dollars in medical expenses would have been easier to read if I were holding those boys. I would've tossed the EOBs aside and said, "It was worth it". It felt impossible to think that way now.
Our first visit to the cemetery- it was supposed to be difficult, and it was. This was something that we hadn't been able to do until about 6 weeks after the funeral. I felt so guilty for not being able to, but I just couldn't.
We took Cross and Crue to pick out a flower to place on their grave. It was a gorgeous day for February. Sunny and warm with very little wind. I remember standing there, unable to move or speak. Just tears. Cross and Crue positioned their flowers perfectly. They got bored and began to wonder around.
At one point Cross came back over and stood between Gary and I. He said "Let's have prayer". This wasn't like Cross; Crue was always the one who wanted to pray. Of course we did, and it was a very special moment.
A little bit later, after the boys had wondered off again, I noticed Cross sitting on a log on the other side of the "Garden of Angels". I guess my mommy instincts kicked in- I could sense that something was going on. I walked over to sit beside him and asked him what he was thinking about.
He looked up at me and said "I just wanna see Cannon and Coyt". I tried to be strong and hold back my tears, but I couldn't. He leaned against me as I said "me too, sweet boy".
He had been fiddling with the grass and leaves at his feet. He showed me a leaf sitting in the palm of his hand and said, "this was my heart". As he crumbled the leaf into tiny pieces he said, "now it's broken". I sat there with him as he profoundly expressed more emotion in that 10 minutes than he had in his 6 years of life. It didn't seem fair that he had to face so much pain at such a young age. I would do anything to take that away. We will continue to visit the cemetery together as a family. It is part of our healing process and something very special to us.
Grief Counseling
We didn't jump right into any kind of counseling. For me, I didn't feel like I needed it yet. Of course I was grieving, but I didn't feel completely out of control with my emotions. As long as I was with Gary, Cross and Crue, I felt good. It is still so hard for me to be apart from them.
Going to grief counseling was a way for us to ensure we were in a normal place in our grieving process (as normal as you can get anyway). I wanted to ensure we protected our marriage and our relationships with Cross and Crue.
We met with our pastor who encouraged us and shed some light in areas where we hadn't stepped into yet. I walked away with three key things:
Don't let your sadness keep you from rejoicing in your friends' blessings. Serving others can be helpful in the healing process.
When you're trying to figure out what the lesson could be: It may not be that God is trying to teach you a lesson; He may just be fundamentally transforming your life.
Don't place so much focus on what you've lost that you miss out on what you've been given. God's blessings still abound, even in the midst of tragedy.
A sweet friend told me it's okay to be sad, and it's okay to be okay. At first, it was hard to want to be happy and have normal conversations. I was afraid to move on…afraid that I would forget about Cannon and Coyt.
For now, I feel like I'm making it. God has placed people in my life to walk alongside me. Dear friends have sent precious gifts in memory of Cannon and Coyt. We have dedicated an entire wall and several shelves in our home to keep the memory of our little guys alive. We talk about them often and in our prayers at night we ask Jesus to "give them big hugs" for us. Each gift, text, or card I receive always comes when I need it most.
God gave me more than I ever thought I could handle when He sent me down this path. But this path has taught me how to love deeper, how to pray without ceasing, and how to have hope in times of darkness. God is good, all the time.
For the LORD is good; his steadfast love endures forever, and his faithfulness to all generations. Psalm 100:5
Cross and Crue were actually at the hospital when Cannon and Coyt passed away. We were lucky to have a good friend from Houston there to watch them in the lobby during Cannon's passing and then my niece was with them during Coyt's passing the following day. They never had the chance to meet their brothers.
Cannon took his last tiny breath on Saturday night just before midnight and Cross and Crue had already fallen asleep. On Sunday morning we shared the news with them. We didn't shield them from the reality that he was very sick and the doctors weren't able to save him. He was in heaven now where there was no sickness. They seemed to understand. We told them that mommy and daddy were very sad and that they would probably see us crying, but in the midst of those tears we were also so happy that God was holding Cannon in His arms. Now we had to be strong and pray fervently for Coyt. His heart was sick and we wanted Jesus to heal it.
It wasn't but a few hours later that we had to have the same conversation after I "rocked Coyt to sleep". We shared with them that God needed them both. That He has big plans for them. It broke my heart when Cross and Crue both expressed sadness that they didn't get to meet them. Hospital policy wouldn't allow children under the age of 14 in the NICU and I never even thought to request an exception during these last moments. That is one thing I regret. Although, maybe it's best that they didn't see them. Sometimes as a parent you just don't know what's good or bad for your child. That's when we pray that God would guide us toward the good and away from the bad. I have to believe that He did that.
Going Home
On the way home from Houston we got stuck behind a funeral procession for about 20 minutes and then I received a voicemail from an unknown person who was RSVPing for a baby shower. She clearly had the wrong number. Satan was already trying to stand in the way; he would love to see me crumble. Gary and I began to discuss the funeral arrangements for the boys. Part of me didn't want to do anything at all. I didn't want to feel that emptiness of realizing they weren't here. I didn't want to look at my closest friends and family and have nothing to say, just tears. Gary had great reasoning though. He wanted to take a traditional funeral service and turn it into a time of praise and worship. The closeness that we feel to Christ during worship is about as close as it gets here on earth. We have an amazing opportunity to celebrate the short, sweet lives of Cannon and Coyt while worshiping our Jesus who would be holding them in His arms in that intimate moment of worship. We decided to refer to their funeral as a "celebration of life". We had many decisions and arrangements to make throughout the week. The service was set for Saturday, January 11, 2014. This day was supposed to be special for another reason. A day to celebrate the upcoming arrival of the Ohmstede twins. January 11th was the day we had chosen for their baby shower. When we got home (6 hrs later) to Wichita Falls, the reality that my pregnancy was over hit me. When I last left home we were headed to Plano to check on the boys and purchase their nursery furniture. I was so very full of hope and excitement. When we returned on this night I had nothing left inside of me. No hope, no excitement. I got out of the car to see my brother standing there. I lost it and he hugged me. He said "y'all have touched so many people's lives." It was then that I thought to myself- God, if that's true and this was all an effort to reach others for your kingdom, then I praise you for it. But why did You choose me? And why does Your perfect will hurt so deeply? Please just take the pain away. I was encouraged by my brothers words, but selfishly wished it wasn't me that God was using. When thoughts like this would cross my mind, and when I took them straight to God, He would give me an overwhelming sense of peace. As if to say, "Angie, it is you that I have chosen, and you are strong enough." I still loved my Heavenly Father and trusted His plan, but He knows I'm walking through a valley and He also knows that I'm going to question Him. It's okay to tell Him when your sad, scared, angry, unsure, etc. 1 Peter 5 talks about casting your cares upon Him. He wants to bare your burdens for you. The best part about this passage is verse 10 "And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen, and establish you."
Planning the Celebration
We had several things to take care of for the service. My brother and Gary's dad came along with us. I didn't realize how much we would need their support on this day. They didn't have to say anything; they were just there. Sometimes that's all a person needs. We met with the funeral director to write the obituary and choose a casket. We chose to bury them together. God had already made it clear that these two little guys belong with each other. The funeral home had the perfect little white casket, just as I had envisioned. It was oh so very small. To think that they were both tiny enough to fit inside it broke my heart again. A lady took us out to see the plot we would be purchasing. It was close to the road and on a corner. I guess that was a good thing. To be brutally honest, I didn't care in the least. I was forced into having to make these decisions that no mommy wants to make. Lord, here I go again. A moment of weakness. Please give me strength to make it through this day. We then had to have a headstone created. The lady we met with was so helpful. It was comforting to us that during this time spent choosing the layout of the headstone, God had given us strength to hold it together. We even joked about choosing an OU logo or a crimson colored stone. It felt good to smile and feel alive with a little laughter. But the lady helping us became emotional toward the end. She was sad that we had lost our babies and had to excuse herself to get a box of tissues. Neither one of us knew what to do. We felt awkward for not having any tears to shed. God had given us grace so we could see that Cannon and Coyt had touched her heart. She didn't cry because we were crying or trying to hold back the tears. The short life of our boys had made an impact on the life of this stranger.
~~~~
Gary and I wanted to wrap Cannon and Coyt in a special blanket. Cross and Crue both have a light blue blanket that they have cherished since they were infants. It's satin on one side and soft minky on the other side. Dillard's had the exact blanket, but in white. It was perfect for the twins. A friend had shared a wonderful idea. We took Cross and Crue to a local children's store to pick out something to give Coyt and Cannon. We would place it in the casket with them. We didn't place limits on what they could choose, whether it be a toy, stuffed animal, blankie...anything. It was so sweet how much thought they put into it. We had told them each to choose one thing. Cross found a light blue soft puppy that had a rattle inside it. He began to show tearful emotion when he insisted that he buy two of them so that Cannon and Coyt could each have their own. Of course, we let him purchase two. My heart was hurting for Cross' sadness. Crue decided on a rainbow striped sock monkey. He wanted Cannon and Coyt to share only one. Cross and Crue's personalities were so evident in the item they chose (one a sweet puppy, the other a colorful monkey). We then purchased an extra puppy and monkey for Cross and Crue to keep so they would always remember their gift to their Brothers. The night before the funeral we went to the funeral home to see the display. We chose to do closed-casket and not have a viewing. We wanted to remember them the way we held them. We took Cross and Crue with us in an effort to prepare them for the funeral and answer any questions they might have. I held it together pretty well during this time. I think I was numb to the thought that my babies were in that little white box. The set-up was beautiful. The flowers sent by close friends and family were perfect. We had chosen blue, lime green and yellow flowers for the casket. We sat down with Cross and Crue on a couch in the room and read a book to them that explains the process of death and funerals on a child's level. They really didn't have many questions. Though, I knew they would come at probably the most random times.
The Celebration of Cannon Ray and Coyt Ryder
I knew this would be the second hardest day of my life. How could it be possible that this was happening to me...to my sweet, innocent children? All I know is that God has big plans for Cannon and Coyt...and he chose Gary and I to be a part of those plans. Boy, if we only knew what those plans were...it would be a lot easier to understand. In the meantime, God is shaping us like never before. I'm reminded of the lyrics to Give Me Faith by Elevation Worship:
Give me faith to trust what you say.
That you're good and your love is great.
I'm broken inside; I give you my life.
All I am, I surrender.
I needed God in this moment to give me the strength that no parent has in attending the funeral of their infant children.
The morning of the funeral was very hard. I didn't want to get ready, thinking I could prolong the inevitable. I was nervous about seeing people and everyone staring at me, waiting for me to lose it. My prayer was for God to give me more strength and a peace that would get me through the next few hours. I felt very strong during the family lunch. It wasn't until we walked into the sanctuary that I fell apart. I clung to Gary and just cried "no, I can't". But he held me and we made it through. The service was perfect. The worship, the message, the speakers and the band that led worship- so perfect. The songs we chose for worship still play over and over in my mind. They are so fitting for what I'm feeling. Cornerstone by Hillsong, Give me Faith by Elevation Worship, and God is Able by Hillsong. We then chose The Sun is Rising by Britt Nicole as our song for what we were facing with the loss of our babies. There is something amazing about putting scripture to music. For me it is comforting; It is healing.
Each of us wrote a letter to Cannon and Coyt that was read aloud at the celebration. The letter for me was very difficult to write. I didn't know what to say. I had started over many times until one night I just opened my heart and let the words hit the paper:
My sweet baby boys,
My love for you began long ago- and then it doubled when we found out you were twins. Cross and Crue were thrilled that they would have TWO baby brothers. Everyday I would drop Cross and Crue off at school and they would lean over the front seat to hug my growing belly and tell you, "Bye Coyt and Cannon! Keep growing in there. Were gonna play on the playground today!". They love you so very much.
At the beginning of this journey, my prayers began for you. That God would protect you in the womb and mold me to be the best mommy that I could be for you. I remember thanking God for the privilege of being your mommy early on and reminding Him that I understood you belong to Him. Little did I know, He was preparing me to FULLY believe that. To be honest, I kind of hoped that my being obedient in saying "Lord, they are your babies, they never were mine", that He would say "Angie, you passed my test of faith and trust and now I give them back to you." That didn't happen. He had bigger and better plans for you than for you to have to endure the pain and suffering of this world. I know I would have been a good mommy and your daddy would have been the best daddy, but you are in the best hands with our Heavenly Father.
My greatest memory of you both was pressing my pinky finger into the palm of your tiny hand. Your hand was too tiny to wrap around my finger, but the second I would try to pull away you would follow my finger as if to say "don't let go". You knew mommy was there. Know that I will always cherish the hours we had with you. God used you to teach us how to love deeper, how to pray without ceasing, how to have hope in times of darkness, and much more. I can't wait to hold you in my arms again. Love, Mommy.
Cross and Crue's letters each reflected their personalities. Cross is very short, sweet, and to the point. Crue is more playful and full of words.
Cannon and Coyt,
I'm glad that y'all are in heaven. Y'all have fun. Goodbye. I miss you.
Your Big Brother, Cross.
Dear Cannon and Coyt,
I'm glad you're in heaven and not sick anymore. If you were here, we would teach you to not throw toys, not kick, and not punch. We would teach you how to love Jesus. We miss you everyday and we love you everyday.
Love, Crue.
Gary's letter was the perfect letter from a daddy to his boys. He combined his deep love as a father with just the right amount of humor. It was perfect.
Dear Cannon & Coyt
First & foremost I want y'all to know that I love you. I've always loved you. From the moment your mom & I thought there was just one of you only to be blessed to find out that both of y'all would be a part of our lives. We sure are going to miss you guys. I think of all you could have been and done in life, and it saddens me. However, I know that you are everything God made you to be! I am reminded of your mom & I talking about the fact that y'all are Gods children & from the beginning y'all would always be His. We are sad that we don't get to help you learn about the important things in life like walking, riding a bike, playing catch or how to throw a ball, late night cookies & milk snacks with mom or dad, talking about the birds & the bees, explaining why that girl makes you feel like your gonna pass out, teaching you how to drive, talking to me about that one girl who you think is the one, telling you I'm proud of you, telling you I love you & hearing you say it back, and most importantly, how to be an OU fan & cheer them on wether they're losing or winning championships. Just kidding they're always good!! Ha. I can tell you boys that honestly what I'm going to miss the most is the opportunity to teach you about Christ and see you grow up loving Jesus. But the best part of today is that I know you already beat me to that... You get to see Jesus face to face and praise the one who blessed us with y'all even for this short time. Daddy is jealous that you get to be up there aggravating Peter & Paul by shooting water balloons at somebody's mansion. Ha!
Cannon & Coyt know this:
Daddy loves you & will always love you! I can't wait to see you again!
Your Dad
At the end of the service, we chose to be escorted out first. As much as I wanted so badly to hug the neck of each person there, I just couldn't handle it emotionally and physically I couldn't stand for very long.
We had a private graveside service for the family. This went better than I thought it would. I thought I wouldn't be able to handle the finality of it all. It was over; I was burying my children. Instead, I had complete peace and comfort in knowing that my boys weren't in that little white casket. Sure, their sweet, tiny bodies were; but they were in heaven. They were resting in the arms of their creator. And I have the promise of seeing them again! What a glorious day that will be.
Moving Forward
What has helped me get through this time is the love of my family and close friends. It's like they know when to text, when to be there, and even when to be distant. More importantly, Gary has been my rock. God has used him to minister to me as the most supportive and Godly husband I could've ever asked for. For the first few weeks (and even still), he never left my side and I wouldn't have it any other way. We will never go back to what life was before Cannon and Coyt. We are creating a new normal for our family.
Cross and Crue have handled their loss pretty well overall. They both will periodically say how they miss them or wish they could have met them. Cross doesn't show much emotion but has insisted on sleeping each night with the puppy he chose for their casket. Crue has woken up during the night a few times sobbing because he wished they were here. He's our emotional one, and my protector. He must have some sort of radar because the minute a tear begins to roll down my cheek he will come out of nowhere to give me a hug. Then he hollars, "Bubba! Mommy's crying!" And it turns into a family hug. That's the best medicine for a broken heart. I am so blessed as a mommy to have such a loving house full of boys who want to protect my heart.
After everything we endured for Cannon and Coyt, I have a completely different attitude when it comes to being a mommy. Cross and Crue are God's children and I should be mindful of the way I treat His children. My focus is on having more patience and a softer voice for them. When they ask for a piece of chocolate right before dinner- why not? Every now and then won't hurt. Or they want to play basketball when it's cold outside- just bundle them up! Even getting rowdy in the middle of the living room- enjoy the laughter and turn off the tv! I also think twice before raising my voice to them. Kids become fearful when they are yelled at. I don't want my boys to be afraid of me. I want them to trust me and love me during the difficult times. That doesn't mean we don't discipline them, but it does mean that when we do, it's in a way that glorifies God.
I don't know where this road is leading us, but I do know that the One who is in control is worthy of our praise. We're gonna make it.
One month ago on January 3, 2014, I delivered our twin boys (Coyt and Cannon) at 26 weeks. Cannon passed away just over 24 hours later and Coyt joined him in heaven about 13 hours after that. This is our story of life, love and loss. For whatever reason, I feel compelled to share our pregnancy journey in my very first EVER blog post. I hope it will help another family or mommy that God had similar plans for.
When We Found Out On August 1, 2013 I took a pregnancy test to confirm that I wasn't pregnant. (I really didn't think I was) Obviously it did no such thing - it was positive! I was shocked and scared, but excited all at the same time. We have two boys- Cross, 6 and Crue, 5. They are only 12 months and 10 days apart, so clearly we waited a while before having the "discussion" to grow our family. And at that, we hadn't officially decided on a timeframe yet. I wanted to think of the perfect way to break the news to Gary. So I stopped at Target on the way home and bought a little something for this daddy-to-be-again:
A blood test confirmed the at-home pregnancy test and we kept our little secret quiet until our first appointment. We did share our news with Cross and Crue who had the most dramatic, yet hilarious, reaction:
Our First Appointment - Another Surprise On Monday, September 9, 2013, we went to visit Dr. Lamar - the BEST OB/Gyn. We actually saw him in the parking lot when we got to the clinic and he said "Hey guys! How 'bout that!" He was excited to see us again. When we arrived at the clinic Gary said "Let's go check on our children." WHAT?! He said he had a dream the night before that we were having twins. I just laughed...but didn't tell him that I too had a weird feeling that there were two. I will say though, I was much sicker with this pregnancy than with Cross and Crue...I chalked it up to either my being older or that it was a little girl. We got prepped for the first sonogram. I immediately saw a baby on the screen. My love for our baby was magnified in that moment. Dr. Lamar said "there's babyyyyyyyyy..." - he drew out the last syllable for what seemed like forever until he ended it with an 's'. My reaction, "Did you just say babies?" Tears began to roll down my cheeks as I looked at Gary's blank stare into the monitor and Dr. Lamar still hadn't responded. He then said there were definitely two and he was looking for a third. There was a third yolk sac that just didn't develop. Oh my...I was in shock...I laughed and cried all at the same time. Gary just continued to stare at the monitor, haha. [Crazy side note: my sister had fraternal twin girls just 18 months prior and twins don't run in any of our families! They do now...]
Dr. Lamar confirmed that they were identical twins seeing that there was only one placenta, shared between them. He said these kind of twins are not his favorite because of the risk of Twin to Twin. That's where one twin could take on more blood and nutrients than the other. I remember thinking to myself "I bet the chances of that are slim... God's got this" - and never gave it another thought…for now anyway. We were excited to share our news and humbled that God would bless us with TWO of His children.
We had already gotten creative (thanks to Pinterest) with how we were going to announce our pregnancy to the world (or FaceBook...), but obviously had to make a slight change! I told Gary I had a feeling that I would have to change my chalkboard art. How crazy?!
Ready, Set, Grow! My prepping for the arrival of TWO began immediately as I prayed constantly for these guys. I remember being in a constant state of humble thanksgiving. Maybe I was doing an okay job as a mom after all for God to trust me to raise two more of His children. So humbled. My belly grew quickly!
I had absolutely no complaints about my pregnancy (once the 13 weeks of nausea passed). I felt great and even got out and ran a little every now and then. I was more health conscious about this one than I was with Cross and Crue, stocking up on lots of fresh fruits and veggies and eliminating a majority of my caffeine intake. Yep, I sacrificed my daily dose(s) of coffee! My biggest cravings were crunchy tacos (from Taco Casa only), peanut butter with celery or apples, and cheerios for breakfast - EVERY morning.
We made plans for turning the playroom into a nursery. Ikea has some GREAT organization solutions for Cross and Crue's toys (which would be moved to the family room!)…and they are very reasonably priced! We already had childcare situated for them - my Mom's willingness to keep them (in addition to my sister's twin girls!) was a huge blessing. The planning for their arrival and lives was so exciting! Not to mention, I LOVE shopping so picking out the perfect cribs, highchairs, swings, strollers…ah!...This was too fun.
We looked forward to every appointment especially since we got to see our TWO babies on the ultrasound monitor. It was easier to see the multiple heart beats and it was also important to monitor their growth since they were identical.
Gender Reveal At 17 weeks we had a routine check-up with Dr. Lamar. At this appointment we asked Dr. Lamar if he would take a look and see if he could determine what our little ones were. We had some close friends planning a gender reveal party for our family (they were literally waiting in the parking lot for the envelope!). Dr. Lamar was confident in what he saw and without letting us know the secret, he slipped it in an envelope and we passed it on to the hostesses. It was definitely a long day after that! SO many people had their fingers crossed that they were girls, simply because there are no Ohmstede girls - ALL BOYS! Gary was confident that they were boys. Surprise! He was right! And I quickly fell in love with the idea of having FOUR boys. I loved being a "boy mom".
The Facebook Announcement
At 19 weeks, we had our "big" ultrasound that measures the anatomy of the babies. This is the routine ultrasound where most learn the gender of their baby. Everything looked great! Now we press on until our next routine appointment at 21 weeks with Dr. Lamar where he would begin to see me every two weeks to make sure I wasn't at risk for pre-term labor too soon.
Our Greatest Fear Becomes a Reality
Over the next two weeks my belly grew significantly! I began to swell and gain weight quickly. My family and friends literally did double-takes at my belly because the sudden growth was so noticeable! All these signs meant something. Something serious.
Monday,
December 2, 2013
My check up with Dr. Lamar was at 1:30pm today. What began as an exciting
moment to see our twin boys on the "big screen" ended with a phone
call to a Perinatal in Plano with a strong recommendation to get us in as soon
as possible.
Our twins
are identical, sharing the same placenta. There is, however, a membrane
separating them into separate sacs. 10%-15% of twins such as ours will develop
Twin to Twin Transfusion Syndrome (TTTS). It's a rare and seriousdisease where one baby takes on a majority
of the nutrients (he's called the Recipient) from the placenta, leaving the other baby with very little (he's called the Donor).
When we
looked at the "big screen" to see our sweet boys (Coyt and Cannon),
the doctor pointed out that Coyt (the "donor") was nearly suran-wrapped by his sac, with very
little fluid. You can see in the video below. Coyt is on the right, barely moving, while Cannon (the "recipient") is bouncing around on the left. It broke my heart to see Coyt so restricted. They call him the "stuck" baby.
Gary and I could both sense the fear in our doctor. What a scary
moment! We were asked to wait in the waiting room while Dr. Lamar consulted with
a specialist to set up an appointment. Gary told me not to "google" anything…I knew that meant it was serious. I held back the tears. I had a meeting scheduled at work in half an hour that I had to get to. Who was I kidding, I couldn't focus…all I knew is our babies were in serious danger. My boss graciously covered my meeting and without hesitation relieved me of any obligation to return to work that day.
The appointment with the perinatal was set for that Friday morning in Plano, TX. I was really hoping to get there sooner, but I knew God was in control and if we needed to be there sooner, He would make that happen. And He did, actually. I must say from this moment on, I didn't take for granted a single movement that I felt in my belly. I was in a constant state of prayer for Cannon and Coyt. I talked to them out loud often so they could hear my voice and feel my love for them. I was so very scared of losing them.
Tuesday,
December 3-Wednesday, December 4
The next2 days were filled with fear,
anxiety, and anger. I was fearful knowing that at any moment we could lose one
or both of these babies...and that I wouldn't know until the next sonogram. I
was anxious about everything that would follow the loss of one or both babies - How would we tell Cross and Crue? How would I be able to cope with delivering one
or two still-born babies? What in the world is God teaching me through this? Then, I would become angryknowing that I have NO control over protecting
the lives of our twin boys. There is nothing at all that I can do. I would also
get angry with myself for being fearful and anxious. God wants me to put my
trust in Him, not dwell on the worst-case scenario. Isaiah 41:10 says "So
do not fear, for I am with you; do not be dismayed, for I am your God. I will
strengthen you and help you; I will uphold you with my righteous right
hand." Philipians 4:6-7 says "6 Do not be anxious about anything, but
in every situation, by prayer and petition, with thanksgiving, present your
requests to God. 7 And the peace of God, which transcends all understanding,
will guard your hearts and your minds in Christ Jesus." I needed the peace
of God to guard my heart and mind. To guard my heart from the pain I felt when
I would think about the 'what-ifs", and guard my mind from thinking too
far ahead and worrying about tomorrow.
I then
realized that I needed to lose the prideful position I had taken in NOT asking
others to pray. I wanted to be strong on the outside, even though I was/am very
weak on the inside. It is also my personality to not ask for help...just do it
myself. (See, God really IS teaching me through this trial. God is awesome.) No one ever said that asking for prayer
was a sign of weakness. But when you let your "self" get in the way,
preventing you from asking, then you become weak. At least I did. God WANTS us
to pray together with other believers.
Thursday,
December 5, 2013
Today is
the first day I've woken up and not spent my morning feeling overwhelmed and in
tears. I felt a great sense of peace. I felt like everything really is going to
be okay. Dr. Lamar asked us to come in at 11:20am. He just wanted to confirm again what he thought he had seen, before we made the trip to Plano. It was just as he thought. Dr. Lamar gave me a hug and gave Gary his cell phone number. He was adamant that we keep him in the loop. This very well could be the last time we saw Dr. Lamar for our pregnancy - which was very sad for us. We truly love our doctor. A winter storm was headed our
way and we received a phone call from the Plano Hospital who moved our
appointment from Friday to today at 4! We jumped in the car prepared to weather
the storm.
It took us three hours to make the two hour drive to Plano due to the sleet and snow. The
Perinatal walked in to begin the sonogram. After literally only a glance at
both babies, he ordered the nurse to make contact with the Fetal Surgery Center
in Houston. My heart dropped. We did about 30 minutes of sonogram tests. Dr. Trimmer confirmed that it was Twin Twin. There were a few different treatments for this disease, depending on the stage. He told us he was referring us to a fetal surgery center and asked if we had a preference. He offered Houston, Philadelphia Colorado, Cincinnati, etc. We chose Houston since it was the closest to home. He said he would make contact with them and send them our ultrasound video. We left and the doctor said he would be calling us within the hour after the
consultation with the Fetal Surgery Center.
We received Dr. Trimmer's call as we were checking in to the hotel in Plano. The
information we received went something like this: Without a recommended laser
surgery procedure, there is a 0% chance of either baby surviving. (Okay God,
you've eliminated the decision-making process there...) With the surgery both
babies have an 80% chance of making it. They scheduled us to come in Monday morning for an evaluation (this was Thursday night). However, the Houston doctor looked even more
thoroughly at the sonogram and called Gary personally to see if we could be
there tomorrow (Friday). God had consistently intervened to speed up this
process. I was confident that He was in full control. But even trusting in God's plan, I was still fearful of the unknown.
Friday,
December 6, 2013
Gary's dad
left Wichita Falls at 3:30 am to meet us in Plano by 8, on the icy roads, so we
didn't have to go alone. The plan was to meet with the Fetal
Intervention team as soon as we got there for an evaluation. At that point we
would know what is next. This evaluation lasted several hours.
Left to right: Dr. Shami, Jane, Dr. Belfort, Dr Ruanno
After meeting
with the team of fetal surgeons (from literally ALL over the world: Brazil, Iran,
and South Africa), we had more answers. We are in stage 2 of TTTS. Coyt had very little fluid and his bladder was not visible, a sign that the disease was progressing quickly. Cannon had a significant amount of fluid. Both babies were sick and in serious danger. The surgeons would like
to move sooner than later in performing the laser surgery procedure. They would be severing the vessels of the placenta where the babies were connected. This would give them each their own share of the placenta, and would ultimately allow Coyt to begin producing more fluid. They would also remove fluid from around Cannon to give him a more accurate amount. They wanted to move quickly, but because my placenta is anterior, they would have to perform an additional procedure
laparoscopically in order to get to the location they need. This procedure had more risk involved for the babies, and slightly for me.
Dr. Belfort felt comfortable waiting until the next morning to see if the fluid levels
increase (creating the space they would need to avoid the laparoscopic
procedure). They decided to admit me and conduct a scan early Saturday
morning. Dr. Shami gave Gary his cell phone number in case we had any questions...so blessed to have a caring team of surgeons.
Me? I'm failing
miserably at staying strong. Statements made by the surgical team during our 2
hour evaluation continue to go through my mind. "We might can save
one." "This is a very serious disease." "You have a very
high risk pregnancy." "These kids are not currently viable."
"One option is to terminate the pregnancy." I was at the point of not
even knowing how to talk to God. I just wanted it to be over.
Saturday,
December 7, 2013
This morning I
woke up super early - like 5:30! My heart was bursting with so many emotions.
It was the perfect time to spend in prayer. Funny how that changed things for
me. I soon felt an overwhelming sense of peace. I had complete faith that these
boys were going to make it, and so was I. Now, maintaining that faith just
meant me keeping my focus on Him. I've always taught that to my teenage girls
through bible studies and Sunday morning life groups, but I never really had a
GOOD example to share. Boy do I now! Sounds crazy, but I am thankful for God bringing me to this scary
time because it truly has brought me closer to Him.
My doctor came
in to do the sono and everything was as stable as it could be for stage 2. This was a great thing! It meant that we could post-pone the procedure another day. Each day we could buy meant the boys were getting a little stronger. Sunday and Monday also revealed the babies were stable! We had a fetal echo on Monday and it showed slight leakage in the valves of both hearts, but there was nothing that indicated a need to rush into surgery. More good news! God was giving us more time - this time was so valuable, now that I look back.
My Mom and Dad made it to Houston tonight! They had been stuck in Wichita Falls due to the winter storm. It was very difficult for me to get through the first few days without them there.
Tuesday, December 10, 2013
Last night I began having contractions. They were anywhere from 2-7 minutes apart. Because of the excess amount of fluid, my body thought it was time. Our fetal intervention team came in and said today was the day for surgery. I still felt good about God's plan. I didn't know what it was, but I knew I could trust Him. I was confident that our little fighters were gonna make it.
Fetal Surgery This was my first surgery and I had no idea what to expect. They had to give me a general anesthetic to put me completely out due to the additional laparoscopic procedure. What normally takes about 45 minutes took my surgeons at least 2 hours. They went in to sever the vessels of the placenta where the babies' cords connected and said it was more complex than normal. They also removed 1.5 liters of fluid from around Cannon! Overall, the surgeons said the procedures were successful.
Recovery was a different story. I was in severe pain and had a terrible reaction to the morphine. Gary ended up calling Dr. Shami's cell when my flesh turned as white as the sheet. Dr. Shami was there quickly and whatever orders he gave were followed and I was eventually back to normal. I was on magnesium sulfate for the next 36 hours or so in an effort to slow down my contractions. Being on mag is the worst… Side effects for me: extreme increase in body temperature (we had the room thermostat on 60 and I was burning up!), dry mouth, cold-like symptoms (couldn't breath), extreme muscle weakness (not allowed to get out of bed), just plain awful. But the benefit of this stuff is that it aids in the development of the babies' brains. And for these guys, I would do anything. They did a scan each morning and each morning looked a little better. Coyt's bladder was now visible! And he was producing fluid…it was so sweet to see him finally have room to wiggle! Cannon didn't have quite as much room to move around after removing so much fluid, but he was still on the go!
Gary bought me these precious Willow Tree figurines, "Two Together".
After a few days more of observation and GREAT progress reports for the babies, I was released on Friday, December 13th to return HOME. I was given orders for 7 days of strict bed rest, and then moderate bed rest until the babies were born. [Moderate meant I could get up to make myself a sandwich if I HAVE to, but make it quick.] Now (at 23 weeks), I am at an increased risk of premature rupture of the membranes (my water breaking), since they literally put a hole in my uterus. I will likely deliver the babies anytime between now and 32 weeks. We will follow up with our Perinatal, Dr. Trimmer, in Plano each week to monitor the babies closely. Our fetal surgery team said we shouldn't be back in Houston; it was rare that they saw their patients again.
The 6-hour drive back to Wichita Falls was terrible after surgery, but I couldn't wait to get home and see Cross and Crue. It isn't often that we are away from them. Between my career and their sports, I cherish what little family time we get. Yes, I'm that mom that wants her babies with her all the time - but I don't apologize for it ;). I love my guys...especially my husband, of course.
Post Surgery & Bed Rest My first day back home was emotionally very hard. I never realized how much being a mommy and taking care of children requires. Even a 5 and 6 year old! I couldn't help them get breakfast, or get their basketball uniforms ready. And on this day I was going to miss their very first basketball game. I didn't want to hear from everyone else how their game went…I wanted to be there. But I had two other little boys to take care of. Cannon and Coyt needed me right now. I had to remain obedient to the doctor's orders…bed rest. It truly is harder than people think and I don't wish it on anyone. Between recovering from surgery, being on bed rest, and also taking nifedipine to reduce my contractions, I was very slow to move and often dizzy. I would get discouraged because I couldn't take a full shower without feeling dizzy and having to cut it short. This is hard for someone who typically washed their hair and ensured smooth legs DAILY! That's okay, this routine was only temporary and far worth it for Cannon and Coyt. So many helped us by bringing meals and just sending an encouraging text here and there. We are still amazed at the love others showed our family. We had a goal to get to 28 weeks, giving the boys a 90% chance of survival at birth. My co-workers made a paper chain made of links with encouraging messages. There was one for each day until we made it to our goal. I cried when they brought it to me! I cried A LOT these days. This was so thoughtful - such a great idea.
Our first follow-up in Plano with Dr. Trimmer was exactly 7 days after surgery on Tuesday, December 17th at 9am. Since Plano is two hours away, we decided to drive down the night before and stay. It was nice not to feel rushed. Dr. Trimmer said things were looking pretty good for our first follow-up! What a relief. Coyt did appear to be a little anemic, but that was to be expected since he was the donor baby. He had "donated" a good supply of blood to Cannon prior to the laser surgery. The boys were very active and even waived at us a few times. We love them so very much.
Another week went by and we enjoyed spending Christmas with our families. Cross and Crue had the best Christmas ever thanks to my amazing co-workers who took it upon themselves to do our Christmas shopping for us. I never even thought about not being able to shop!
"Above all that has happened, we continue to have faith and are excited to celebrate the perfect birth of Christ. Two weeks post-surgery and we have so much to be thankful for. Who knew fetal surgery even existed?! Many of you have sent prayers, meals, texts/e-mails, financial support and gifts for our boys to open on Christmas morning. I'm not sure how we could ever thank you sufficiently, but please know that your kindness has been beyond what we even thought we would need. We will go to Plano weekly to check on the babies - and after a few weeks we will go twice a week. One baby (Coyt) is anemic. If that worsens, we will have to go back to Houston for a fetal blood transfusion. If it remains the same, it would likely mean a blood transfusion at birth. I believe God will prove to us and the doctors that HE is in control once again, and the anemia will "disappear". I am on bed rest until they are born to give them a greater chance of continued growth in the womb. I am 24 weeks now. The babies will be delivered at the Medical Center of Plano since they have a level 3 NICU. We will get to know the Plano area extremely well over the next several months. Thank you friends and family for loving our family like your own. We love you all, Merry Christmas!
-Angie Ohmstede, December 24, 2013 via Facebook
On Friday, December 27, 2013, we went for our 2nd follow-up in Plano. We were eager to see our boys again, of course. After the appointment we were going to stop at Ikea to purchase the cribs and a few other things for the nursery. I was so excited to get the nursery put together. I had a friend who was going to decorate the nursery for us since I couldn't be up and around. I couldn't wait to see how it all came together! Here was the plan for the nursery, thank you Pinterest! -
We got to our appointment and had to wait nearly an hour. Once we got back, Dr. Trimmer began the scan. We understood all the measurements and numbers at this point. I actually caught Dr. Trimmer referring to one baby as "a" when it was "b"…he said they had to have switched places then. That's weird, they were separated by a membrane…how could they switch places? I then knew something was wrong when Dr. Trimmer stopped in the middle of the ultrasound to hand me a box of kleenex. My heart dropped when he said he was going to make a quick phone call to Dr. Belfort, our head surgeon in Houston, because it appeared that the TTTS had returned and was looking to be stage 4. Dr. Belfort said to get to Houston immediately and not to eat or drink anything as we would likely be heading right into surgery.
Could this really be happening? My heart was so heavy. I thought for sure that we were in the clear. I didn't want to relive the Houston nightmare. The painful surgery and recovery. The constant worrying if the babies were gonna make it. I didn't think I could handle anymore. We were supposed to have a good appointment, and then stop at Ikea to buy their baby cribs...
I am thankful that we chose not to bring Cross and Crue with us to this appointment, and instead Gary's mom came. God totally revealed himself there. We needed her there with us. We got in the car and headed straight to Houston. My Mom and Gary's dad made plans to carpool down ASAP and arrived in Houston that evening.
More Bad News
Friday evening, December 27, 2013 - When we arrived at the hospital, Dr. Shami was waiting for us. We went into evaluation for what seemed like hours. Dr. Shami didn't say a word throughout the entire ultrasound. When he finished, he gave us the run down. Coyt had severe anemia and had developed hydrops. They were still sharing the placenta somewhere. This put us at stage 4 TTTS, but to repeat the laser procedure again would be too challenging. The membrane that separated the boys had torn and they were now sharing the fluid. That's why they had switched places! I think they just needed to be closer to each other :). Our only hope was to attempt a fetal blood transfusion the next morning on Coyt. They also reminded us that Cannon too was very sick, as his heart had been pumping too much blood and was at risk for heart failure. Dr. Shami ordered the blood and I was prepped for surgery the following morning.
We had to make a very difficult decision before this procedure. There was a chance that Coyt would not tolerate it. Dr. Shami needed to know if we wanted to continue the pregnancy should Coyt not tolerate the surgery (thus giving Cannon a better chance at survival), or deliver them both knowing that Coyt would likely not survive with hydrops and Cannon only had a 50% chance of surviving outside the womb in his state. We met with a neonatologist who shared with us that in her 20+ years she had never seen a 25 week old hydrops baby survive outside the womb. This was the first most difficult decision to make as we chose to continue the pregnancy should Coyt not make it. I can't explain what led us to make this decision, but I know that Gary and I prayed about it and we both had peace with it.
Saturday morning, December 28th - For this procedure, I was awake with only a local anesthetic as they used multiple needles to go through my belly to give blood to Coyt through his umbilical cord and also into his belly. They had given me "sleepy medicine" to help me relax, but had to take me off because I wasn't breathing well. That experience was horrible. I woke up to hearing the surgeons discussing where to place the needle and then feeling the placement of the needles. I quickly became nauseous and the rest involves a bag for me to gag in along with severe back pain from lying so long on the operating table. In the end, the procedure went well and praise God, Coyt was tolerating it! Recovery from this procedure was much better than the last. I did have to be on the magnesium sulfate again, but I'll take it!
We would begin to see results within 3 to 4 days. We had been scared, sad, angry, and confused but at this point we were adamant that we stay strong and have faith knowing that this is part of God's perfect plan. We were totally equipped to handle this through Him.
Each day (for the next few anyway) there was slight improvement shown in the ultrasound doppler readings. Dr. Belfort broke the news that we would remain in the hospital until Cannon and Coyt made their debut. We kinda figured that already! We grew to absolutely love our nurses. They had a passion for their work and it was evident in every encounter we had. They remembered us from our stay two weeks prior. It was our home away from home.
New Year's Eve News
Today we witnessed one of God's many miracles. When we went for our ultrasound, the hydrops was completely gone! We heard our doctors say "Wow, I've never seen anything like it", "This is a Christmas miracle" and "What a New Year's gift". My heart was full. Coyt and Cannon really are fighters! God's strength is enough and is so real when you fully rely on it! The doctors celebrated with us and also let us know that things can change quickly, but today's news was good. We were scheduled for a fetal echo in two days, on Thursday. I rested well on New year's Eve and started 2014 with a heart full of hope for my precious boys.
Speaking of precious boys...All this time in Houston, Cross and Crue have been at home in Wichita Falls enjoying time with their cousins. On New Year's Day, Gary's brother Greg decided to drive down to Houston from Wichita Falls to bring them to us. This meant a lot to me. Gary and I both missed them terribly and having them around would give us a sense of normalcy. They arrived and were full of questions! It felt so good to have them there.
What does this button do, Mommy?
We had big plans on Thursday after my fetal echo! We were gonna take them to the children's area of the hospital where they have a huge train display and fountain…and McDonald's of course! Unfortunately, the fetal echo revealed the "at anytime things can change" card. Both babies were very sick, again.
Shortly after the fetal echo, our doctors gathered in our room to propose a procedure that had never been done in the womb. In addition to another blood transfusion for Coyt, they would remove blood from Cannon and replace it with saline. This is something that a neonatologist would perform on an infant, but in the womb posed risks that were unknown. We were given the option to go through with this experimental procedure, or do nothing and let the pregnancy ride its course. We had no idea what the risks were, and neither did they since it was experimental, but we were so very confident in the work of our doctors and we trusted them to perform the procedure. They are well known throughout the world for their research and work. [Why we love our team of doctors so much: in the next hour before surgery, Dr. Belfort researched this procedure and found 4…only 4!…known cases in the world where it had been done. He has a passion to do whatever he can to save babies - even our babies.]
I mentioned before the last procedure that we had to make a decision as to whether or not we wanted to continue the pregnancy if Coyt didn't tolerate it. This time we made the decision to deliver them if one of the boys showed any intolerance. They were both showing a better chance of survival than the previous week. I remember looking at Gary and telling him I couldn't lose one. We had to deliver both of them. I was 25 weeks and 6 days, so they were prepared to deliver the babies if necessary. They had a pediatric cardiologist in the operating room who monitored both babies throughout the entire procedure. There was also a team from the NICU prepared to take over if the babies had to be delivered. It was all so very overwhelming.
The surgical team in their pre-op huddle.
The surgery was at 9:00pm on Thursday night, January 2nd. I shared my terrible experience from the last anesthetic with the anesthesiologist so this time he gave me a heavy dose of anxiety meds and only a small dose of pain meds during this procedure. I don't remember a thing and apparently my breathing was just fine. As always with me, it took longer than expected but everything seemed to go well! The babies were still cozy in my belly and stable! Another 12 hours of magnesium for me!
We've Done All We Can
January 3, 2014 - The next morning Dr. Belfort came in to check the babies. He said the babies appeared to be tolerating the procedure. We would go for another fetal echo today. I hadn't felt Coyt move much at all today. I tried not to worry thinking it was due to the mag and anesthetic. And both babies were on 24-hr heart monitors, so I constantly listened to their heartbeats. We went for the fetal echo, not learning much of anything new. Nothing worse, but nothing to jump up and down about either. The valve leakage was still there but not any worse.
When we returned to my room from the fetal echo, they hooked me back up to the heart monitors. Within the hour my nurse came in with a strange look…and then another nurse. They put an oxygen mask on me because Coyt's heart rate had dropped to 80. The oxygen helped and his heart rate went back up. Dr. Belfort and Dr. Shami stopped in just to check on me and asked why I had the oxygen mask. When I told them about Coyt they became concerned. "These kids are so sick" said Dr. Belfort. They looked at Gary and I and said they have done all they can. It's now time for us to tell them what we want to do. We either continue with the pregnancy and see how it plays out (most likely losing one or both boys), or we deliver the babies prematurely (26 weeks) and allow the NICU team to take it from there.
I looked at Gary with tears in my eyes and said "we can't lose them". We decided to deliver the boys and pray. As soon as we said the word, Dr. Shami clapped his hands and said "lets go". A large team of medical personnel stormed in and rushed me to the OR for an emergency c-section. I had never been more scared. I was alone in the OR (except for the chaos of the doctors and staff) literally shaking as they prepped me for surgery. In that moment I thought about all the people who were praying for Coyt and Cannon. It brought tears to my eyes to think that people loved them enough to pray for them. God gave me peace right then and the hope I needed to believe that Coyt and Cannon were gonna be okay. They put me completely under with a general anesthetic and I woke up in recovery.
Cannon was born at 7:17pm and Coyt followed just 10 seconds later, also at 7:17pm. They took Gary back with the boys. I wasn't able to see them just yet. On a scale of 1 to 10, my pain was a 20 after the surgery. I had never had a c-section and had no idea what to expect, but this was by far the worst physical pain I had ever felt in my life. I was transferred to post-pardum two hours later and Gary came in with pictures of Coyt and Cannon on his phone. They were so precious.
Cannon Ray Ohmstede 2lb 8oz - 14 inches
Coyt Ryder Ohmstede 2lb 4oz - 9 inches
Cannon (left) - Coyt (right)
The next morning I was very slow to move but we made our way to the NICU. I was anxious to meet my new baby boys. I fell in love with them immediately - I actually loved them from the moment we knew they existed, but there's something about seeing them for the first time that magnified that love. I knew they would be hooked up to ventilators and have tubes, etc., so I was prepared for that. I really wasn't prepared for how tiny they were! They were absolutely precious. For both Cannon and Coyt, I slipped my hand into the incubator and pressed my finger firmly against the tiny palm of their hand. They couldn't wrap their hand around my finger because it was so tiny but they wiggled their feet a little. When I went to pull my finger away they each would follow it as if to say "don't let go". I didn't want to leave them! The neonatologist briefed us on their health. He said last night was a tough night. Neither of their hearts were pumping blood well. Beyond that, there were so many issues he listed, but the medical lingo was so foreign to me. None of it mattered - I knew God was in complete control. We continued to pray for a miracle.
I vividly remember the doctor saying "These babies are both very strong for what they are facing." Cannon and Coyt always seemed to amaze the doctors. They were fighters. We went back in forth to the NICU throughout the day to love on our boys. That night around 10:15pm, we received a call from the NICU asking if we could come down to answer a few questions. I didn't feel like is was urgent because they weren't adamant that we come.
When we got there Dr. Mandy said they had just had a very scary moment with Cannon. He said he had crashed and they had to bag him and give him 2 shots of epinephrine. He said they didn't think they would get him back but then all of a sudden he started to improve. At first, I didn't realize the seriousness of the situation - God brought him back because that's what He's supposed to do... And everything was going to be fine, right? We stood by Cannon and held his tiny hands, encouraging him to keep fighting. I was so proud of him. While we stood there, he began to crash again. A team of doctors and nurses rushed in. As Gary and I stood back, my heart sank. I felt helpless as a mommy. They were fighters, and they were supposed to be okay. We watched them bag our sweet baby and again give him two shots of epinephrine - they brought him back. Dr. Mandy walked over to us and said they would probably see several episodes like this. He said he couldn't figure out what was causing it. The things that would normally cause these episodes weren't present in Cannon's case. They would continue to work on him just as they had been for as long as we wanted them to. But he also had to give us the option to stop them at anytime. He pulled his computer over to us and showed us all that Cannon had been through in the past 24 hours. He explained everything in such detail as if to reassure us they were doing everything possible. For the third time, Cannon crashed again. Dr. Mandy excused himself and joined the team as they worked to save him again - and they did. I didn't know what to do. I looked at Gary, heartbroken and in tears, and said "He's not ours". When our battle with TTTS began, I told God, "These our your boys, they aren't really mine - please protect them". I was reminded of that as I watched Cannon fight for his life. Gary and I looked at each other - both waiting to hear the other's thoughts. I said "I can't do it" and Gary said "He's so sick". I knew at that moment that God was telling us to let Cannon go. Gary was right, he was so sick. We couldn't put him through this any longer. I just wanted to hold my baby and it was time to give him to our mighty healer.
Gary signaled the doctor. They began to remove tubes from him. They handed him to me wrapped in a blanket. In that moment time stood still. I felt so many different emotions. I was sad and hurt, of course. But there was also a feeling of peace. You know that feeling when you've sought advice from your parent and felt good about the decision they led you to? I felt like we sought advice from our Heavenly Father and we were led to make the best decision for our child. We were giving Cannon back to our creator, and this time it wasn't just the words of my prayers - It was really happening. Cannon only lived for a few minutes after that. They were the most painful minutes I had ever felt, but I have the most precious memories. To have had the opportunity to hold this little guy as he fell asleep in my arms only to awake in the arms of Jesus was a great privilege. My goodness, he was beautiful...
I cried until I felt like I couldn't cry anymore - for that moment anyway. I walked over to Coyt's incubator. I told him to be strong, that his brother was in a better place now and we needed him to get better. I just knew Coyt would be okay. I had to be strong for him.
We went back to the room and the nurses were already aware - there was a broken heart posted to my door. This signaled others to not enter unless they went through my nurse. My only thought for the rest of the night was that I had met my sweet Cannon that morning and said goodbye to him that night.
The next morning, Sunday, started out with a desire to go see our little Coyt (of course). I wouldn't even let Gary shower! My Dad and sister arrived this morning so Gary and I took them to the NICU to meet Coyt. When we got there, the doctor was insistent that we talk and pulled chairs around. He had been studying Coyt extensively trying to figure out why they weren't seeing any change in his vitals. He had been given various medicines in attempt to adjust the acid level of his blood. His blood pressure, heart rate, etc. had strangely not been affected by the medicines. They had done an ultrasound on his brain and there were several white/gray spots with a pretty large spot toward the front of his brain, indicating damage. Dr. Mandy basically told us that his condition was terminal and even if he miraculously lived, he would have severe brain damage.
I sat through this conversation completely numb. I had felt such hope for him when I woke up this morning. I was so sure that he'd be okay and that we'd be there for a few months until we could bring him home. How could things be any different if I felt so confident? I now believe God had given me hope throughout this entire journey to keep me from crumbling. I had asked Him to give me strength and He did. He knew what was ahead of us. It was time to give Him our precious Coyt. We had options, of course, but they all involved keeping him alive with medicine. God gave Gary and I both peace to let him go.
They unhooked Coyt from his ventilator and removed the tubes. Dr. Mandy told us that Coyt's heart was much stronger and it would probably take him longer to pass. That didn't make me feel any better. As I held him I continued to pray for a miracle. Maybe he would miraculously improve - and I wouldn't have to say goodbye. God, please let us have one of our babies. I had to accept God's plan for Coyt, and it wasn't any easier being the second time. I took comfort in knowing he would be reunited with his brother.
After an exhausting 12 hours, I just wanted to go home. My doctor agreed to release me the following morning. I began to think about all the plans we had for Cannon and Coyt. From the outfit they would go home in to their first day at church, to their first visit to my work. I was so happy that they didn't have to endure the pain and suffering of this world, but I was so broken. I trusted God's plan and I believed in it, I just needed Him to tell me why. What God DID show us was that His timing and provision was a blessing in disguise. The very first fetal surgery bought Coyt and Cannon three weeks in the womb and the second procedure bought them a fourth week. The third procedure kept them alive long enough for us to deliver them, meet them, talk to them and hold them. I thank God everyday that I was able to hold them. Goodbye Houston The next day, Monday, January 6th, I woke up expecting to feel eager to pack my things and go home. To go back to where life felt normal. Instead, I woke up with an overflow of emotions at the thought of leaving the hospital without my babies. I admit, it's the first time throughout this entire process that I've said the words "it's not fair". In that moment, God wrapped His loving arms around me and reminded me that I'm not alone. My Heavenly Father who comforts me and gives me strength was and is right there with me. And He has my baby boys. They are no longer sick. They are perfect. They are loved. "Worthy are You, our Lord and our God, to receive glory and honor and power; for You created all things, and because of Your will they existed, and were created." Revelation 4:11
Although this marked the end of our pregnancy, our journey doesn't end. I will share the most difficult part of our journey (returning home) in another post. I think this one is long enough. :)