Our little girl Esther Frances Holtrop was diagnosed with CDH when I was 21 weeks along. I gave birth to Esther at UW medicine April 12th, 2012. Esther's fight for her life began the moment she born. We had many moments we almost lost her. She was transported to Children's Hospital in Seattle and lived for 20 days, passing May 2, 2012. We are thankful for the story that God wrote in our lives and only hope that he gets all the glory in this.
We think about Esther every day. I get to see Josie smile, laugh, coo, babel, cry, learn how to poop on the toilet (can you believe she is doing this already) and roll over and over again. She gets so excited for food. It makes me long more and more for this with Esther. I wonder what she would have been like? What would make her smile, laugh, giggle and what milestones would she have achieved at 6 months? What would we be facing today if we would have taken her home so medically fragile? What if we never even knew of CDH because Esther would have never been diagnosed with it? Would we love Josie as much as we do now if we hadn't known what it was like to loose a baby? I did not have to face that ugly fear monster of having another CDH baby while being pregnant with Josie. I think I just knew God was going to bless us again, but this time with a healthy one. But lately, I keep seeing it all over. CDH families having another CDH baby. I have followed 5 stories this summer with this happening. Most have made it, but some haven't. We have a 2% chance of having another CDH baby. That is almost the same percentage as any of us. Every 1-2500 babies is a CDH baby. 50% of CDH babies live, 50% die. It makes me scared.
No, we are not pregnant, although we both long for another one right now because we are on cloud nine with Josie and absolutely love being parents. I just have a bigger understanding of Love now that we have lost Esther. I can't imagine how much it hurt God to take Esther back. He hurt so badly for us. He knows Love more than we can imagine or comprehend. I want to know this Love more and more every day.
This last weekend Jason and I ran the Bellingham Bay marathon and half marathon. Jason did the full 26.2 and I did the 13.1 mile. We did it for Esther. To carry her memory in our hearts. To endure a small fraction of what she went through. So we can feel some pain and go to God for strength. To feel close with her and what Christ has done through it all. Jason's goal was to beat the 4 hr mark. He missed it by 3 min. We had a horrible wind and rain storm that weekend. I am so proud of him. Me on the other hand, I struggled and grumbled the whole time. I am not fast. I am 2 min per mile slower than I used to be. My body hurts. How come I can't bounce back? I am almost just as slow running this year as I was last year at 12 weeks pregnant. Do you see the pattern? Me, me, me, me!!!! After we were done running that weekend I couldn't believe we were going to have do the same thing the next weekend in the Leavenworth Octoberfest half marathon.
We got the opportunity to run the Octoberfest half marathon the following weekend with one of our favorite NICU night nurses Michelle. We spent the weekend getting to know her family as well as her getting to know my big sis Julie and her family. We talked about Esther and our memories and we all got to raise CDH support and awareness in Esther's name. Before we started the race, 3 ladies saw our shirts and asked us about it. I briefly talked about our daughter dying of CDH. Tears filled their eyes. They couldn't believe it. We reminded them that it was okay, she was a huge blessing and here we are carrying her memory on together with our NICU nurse. God met me there. Right in that moment. Its not about me, its about Esther and more importantly, God wants to do this with us. Who cares what time I get!!! I was in such awe during the race and the beautiful surroundings. My body felt great the whole time. I ran the whole race without walking, except up one large hill and at water stations. I finished with a smile and I felt Esther and God the whole time.
Not sure what is next for us. We want to continue helping CDH families in their journeys, financially, emotionally and spiritually. I have been in contact with three Washington families over the summer who have had CDH babies. 2 of the 3 made it home with their babies and continue to have ongoing CDH care (as most CDH babies do). The other family is set to go home in a few weeks. We celebrate and rejoice with all of them. Two families that I know from Washington that have also lost their first baby to CDH (one lost her first 2 babies to CDH) are also having healthy babies. One is about a month younger than Josie and the other lady is pregnant right now. We rejoice in this!!!
I will leave you with some pictures of our first 6 months with Josie.
This is a long overdue post that we have been meaning to write for weeks now. We figured most of you would understand as we are in awe of God's new blessing in our life. We can't get enough. I will explain the details of the amazing birth of Josephine and then go on to explain what we have processed in the last 7 weeks, as we grieved the birth, fight and loss of Esther again, we had to gear up for what what was coming ahead. Thursday evening on April 18, as Jason and I were going to bed, I told him I was having cramping that was not going away. I had a feeling we might go into labor in the next day or two, but had no idea because I did not go into labor naturally with Esther. The cramps continued into the night and I laid their nervously as Jason snored away. I finally fell asleep around 2 am and next thing I knew Jason was waking for work at 4:30. I laid there for another thirty minutes and the cramping had not stopped. I went out of the room to tell Jason I think he should stay home from work feeling I was in the early stages of labor. We both went back to bed. I woke up at 8:30 to go to the bathroom and upon returning to the room I felt something trickling down my legs. "Did I just pee my pants or did my water break?" I woke Jason up and told him I think my water just broke. We were going to sit around the house and wait for my contractions to start since I wasn't in any pain, but thought we should call the doctor just in case. They said we needed to get to the hospital because once your water breaks you only have 24 hrs to give birth because your amniotic fluid is slowly leaking out depleting what baby breathes while in utero.
We got the the hospital at 11:15 and received the last open room. We were so excited as April 19 had been Esther's original due date and CDH awareness day. What a tribute it would be if we could have Josephine on this day.
My contractions still were not coming on so the nurse told me she would need to start pitocin at 1pm if they did not start. I got the best meal before my contractions started. They accidentally gave us someone else's ordered food. Jason and I got to share a huge club sandwich, milkshake, fruit and fries.
At 1:15 contractions had not started and I was only 3cm dilated. Dr Thomas my OB/GYN was on call that night starting at 6pm. He came in around 2pm saying, " I wish I could deliver her, but most likely you will have her before I come on shift."
Around 3 pm, my pain was getting pretty intense. Way more than I had with Esther. I felt pain shooting from my stomach to my back and down to my knees with only about 1-1/2 min between contractions. At that point she was totally ready, but I was only dilated to a 5cm. I got an epidural. I ended up having cold shivers from the epidural that were hard to control along with feeling way more pain even with the epidural. I never felt those things with Esther. I knew in those moments that God had completely helped my birth with Esther not allowing me to feel and go through such things as I was this time. At 5:45 our doctor on call came and checked to see how I was doing and to see how I was dilated. Again, I was only at a 5cm but was told everything else was primed and ready and that things could change quickly. Doctor Thomas came in at 6:10pm just to check. We were all surprised that when he checked I was at 10 cm. As he was gloving up across the room and getting the nurse to set everything up, he told me to try a practice push. I did and he quickly said," stop, I can already see her coming." It was so quick and so surreal. On one end Jason was trying to set the scene quickly by putting on Esther worship CD and trying to figure out if he should video the birth or just take pictures or just stand by my side. On the other end our nurse we had all day had taken a break and if she wanted to see me have Josephine, she was going to have to come quickly. Dr Thomas sat at the end of the bed ready to catch her with the biggest smile on his face. I looked around and only saw one doctor and two nurses and Dr Thomas told me to push. I thought, really, doesn't there need to be more people in here? I was used to 20+ people being in the room. I pushed twice and she came out. They instantly placed Josie on my chest. She didn't make a cry for what seemed like 10 sec. I was worried. Esther made two peeps when she came out and that was all I ever heard. How come Josie isn't making a noise? I felt assured though, that she was okay when she cried. It was the most beautiful sound. All the nurses did was quickly wipe the afterbirth off of her as she cried and gazed into my eyes. I couldn't believe I was holding onto her. It felt like a dream. Aren't they going to take her away to clean and check her to make sure she is okay? She instantly latched on as I got to breast feed her. It was amazing.
We got to spend almost an hour with her on my chest without anyone talking or looking at her or taking her away. They knew. This was our moment. They knew we were bringing a new blessing into the world. They weren't going to take that moment away from us. Our nurse was honored to be there on such a special day. They fight for normal patients like us. Couples that love each other and want to have this baby. Ones that have somewhat normal lives and stories, but even more, ones that have lost their first baby and are welcoming a new one and a new start. What pure joy and happiness it was.
Part of the story you don't know is this: Dr Thomas, our obgyn, walked with us as we experienced the birth and death of Esther. He also loves Christ. A month before Josephine was due, they found out their 2 yr old daughter Lydia had cancer, and was near death with her organs shutting down. It was throughout her tummy, and inoperable. She was now fighting for her life. Dr Thomas was only working Tues in the office and Friday's at the hospital while spending the rest of his time at Children's hospital in Seattle. This isn't supposed to happen. For us to switch places like this. We had found out through another doctor that took Dr Thomas place during one of our visits telling us he knew we were Christians and would want to know that Dr Thomas' daughter might not make it past that day. He knew we would pray for her. We saw Dr Thomas the following week. Our hearts were hurting as we spoke prayers and comfort to him. I asked how he could possibly be at work? He simply replied with a giant smile and said "Jesus lives." That spoke so loudly to us. Dr Thomas got to be the one to deliver Josephine. I knew that the smile on his face was different than most babies he delivers. He got to bring a new blessing into our lives.
As I was working in the yard yesterday, that statement Dr Thomas said "Jesus lives" hit me again. Over the last year since Esther has passed, God has painted life in much more detail and understanding for us. He continues to speak to us through music, landscape, people and his word. A hymn David Crowder covered called "Because he lives"was playing on our itunes. It is an old hymn we used to sing in our church growing up. The elders would pass a new babies down the aisle and our church would sing this song.
People always ask us how we can do this. We asked Dr Thomas the same thing, how are you coming to work in the midst of this with so much joy? Its simple, but not to so many who are still hurting and grieving with the loss someone they love, or walking through something so difficult in their lives. Its because JESUS LIVES. Here is the song:
Because he lives, I can face tomorrow. Because he lives, all fear is gone, because I know He holds the future, life is worth living, because He lives. In the second verse it says: How sweet to hold a newborn baby, And feel the pride and joy he gives. But greater still the calm assurance, This child can face uncertain days because He lives.
As our church passed the baby down the aisle, we didn't know what their future would be, or even our own. But we do know that Jesus rose from the dead and He is most definitely alive. We know that we have the promise of eternal life with Christ; and today is just another chance to live lives as God's children who are loved by Him.
Our first three weeks with Josephine were intense. We read the book babywise(maybe just a little to gung ho for our brand new baby girl)- but let me tell you- its not as easy as it sounds. We are thankful for friends who have been there to ease us along with advice. One day a sweet friend with seven kids showed up at my door step at the drop of a dime hearing Josie was having trouble with the night time. She rang the door with her husband with a giant smile on their face and a fancy swing in their hands saying, "this is what we do when are kids wont stop screaming."
We love our community and you who have loved and supported us, cried with us, and are rejoicing with us. It makes this all easier. Thankfully the same friend with seven kids told us to read/watch the DVD "the happiest baby on the block." I feel like that saved our life. Josie is a fighter. She is amazing all day and come anywhere between 5pm to 10pm, she can scream, kick, arch and twist, and nothing works to calm her down. Until the 5 s's came along, that is. She needs to be swaddled, shooshed and swung sideways to calm down. That can take a long time, but it has saved our sanity.
She was born April 19th weighing 7 lbs, 6oz and 20.25 inches long. She is gaining weight and getting taller all the time. Josie has been giving us 5-8 hrs of sleep in a row during the night. She wakes up smiling most times. She loves hearing us sing and smiles the most when we sing "Jesus loves me or Oh how he loves us."
During the first few weeks of her being with us, we cried. We just grieved Esther's one year birthday and are now grieving one year since she has been with Jesus. I tried singing to Josie and all I could do was cry. I longed to have this with Esther, but struggled with the situation and all the tubes, wires and medical crap. We were experiencing and realizing what its like to be a parent and what we missed out on with Esther (a very painful and sobering realization). When we laid her on the ground and she gazed into our eyes, it reminded us of Esther and how she would look into our eyes at Children's. When we swaddled her at night and she slept, it reminded us of Esther when she wasn't alive anymore and we got to swaddle her the first time. Those times made us feel sick to our stomach. When mothers day came, it hurt because she wasn't with us. I remembered being in Mexico last year on mothers day. It was the first day away from everyone and right after her funeral and we hurt. We felt so empty. I asked the Lord, "why," maybe in the same way Job did in the bible. My sweet husband said to me, "there doesn't have to be a reason Esther died Rhonda. There doesn't have to be something God is teaching you or even us. God is God period. We don't need to question him. Did we create the heavens and the earth and the people in it? NO! Is God here for us, or are we here for Him? Then we didn't need to question him. I realized I wasn't being punished. That he isn't a punishing God. She didn't die because I didn't pray enough or read his word enough. This year on mothers day, I went alone to church. Jason was working. I had Josie in a beautiful pink dress Jason's dad had got her. She puked all over it as soon as I got her in the car. I laughed and was mad all at once, "is this what parenting is all about?" Once I got to church, I sat and handed her to my dad who sat next to me. We sang the old hymn "Blessed Assurance." It was what I needed to hear that day. We sang the line "this is my story, this is my song." Tears streamed down my face. Yes, loosing a baby is our story and our song. We wouldn't pick this for ourselves or anyone else. Who would? But, we get to choose to praise our Father all the day long. Even in the midst, or especially in the midst of tragedy and great trial; we still have free will and still can choose to praise our great God. Again, Jesus continues to paint such a beautiful picture and helps remind us who he is in moments like these.
To finish off a real long post, Dr Thomas just wrote on his caring bridge site about his daughter and their experience so far as they are still fighting the cancer in her. He said, "Yes, this has been a life-altering experience. But, I don't want to define her or myself as a (or as having a) child who had cancer. I'd rather her/me be defined by self, faith, love and have all of those be molded through the furnace of this experience into greater compassion for others and greater faith in God." I think that also sums up what Jason and I feel. We don't want to be defined as people that have lost a child, but rather be defined by self, faith, love and have all of those be molded through the furnace of that experience into greater compassion for others and a greater faith in God. Thanks for being patient as it has taken us forever to update this blog. Here are some of our favorite pictures thus far. Rhonda Holtrop
Right after Josie was born and the cord was cut holding onto Pappa's finger
Josie sleeps just like her Pappa
The only way to get her to sleep for long periods without waking herself up is with a swaddle blanket. It has to have velcro on it. She is so tough.
Pappa reading Josephine bible stories.
Her head has been so strong since day 1!! She was rolling over 4 times in one day on Day 10 of her life.
Week 2, we gave her a pacifier. It was the only thing to get her to stop crying while in a car seat.
The dress grandpa Jim got Josephine. She puked all over it as soon as I got her in the car to go to church on mothers day
She can't stop smiling at us
First couple weeks at home
Giving her a bottle at Children's hospital for Esther's memorial so mamma didn't have to breast feed in front of everyone.
I woke up trying to imagine what today would have looked like had May 2, 2012 not played out the way it did. I don't do that; I don't dwell and struggle with "what if's" and "couda, shoulda, woulda's". I feel I've got quite an imagination, but I can't imagine what Esther would look like. That stings a bit, makes me feel a little less or maybe just realize more who's missing today. I thought about how it would be to sing happy birthday to Esther. It is odd, because those attempts to imagine just don't fit; strange that make believe doesn't fit. The truth is my girl has gone where I long to be. Happy birthday would definitely be out of place with heaven all around and our savior Jesus there with you. It brought me back to her bedside at children's hospital. Alleluia, alleluia for the Lord God almighty reigns! I sang to my sweet girl, and we praised Him together. Yes I do miss her so. Holding hands, gazing into her eyes, singing sweet songs to God. Papa and daughter; a perfect match made by the one and only perfect One.
Today is the day, that one year ago my first daughter was born. I stood by my bride and watched her push with everything she had to bear Esther into this broken world; an imperfect world with defect and death. Esther cried, two small squeaks! Hope had been born! I prayed. I cried. I worshipped and begged the creator of all to give us moments with this beautiful child. With each moment of new life, hope grew. I lost all ability to form thoughtful prayer and only cried Abba Father.
Today I am still Esther's papa, but God is Father of us all. God is my papa who sings to me, holds my hand and lifts me up. Dear God, give me the strength to live for you and no one else. For His glory, is the infinitely powerful name of His son Jesus I pray,
Amen!
We'd be eating farmhouse pancakes with you today sweet girl!!!!
Lyrics to the Song "Pilot Me" By Josh Garrels
Pilot Me I will arise and follow you over Savior please, pilot me Over the waves and through every sorrow Savior please, pilot me When I have no more strength left to follow Fall on my knees, pilot me May your sun rise and lead me on Over the sea’s, savior pilot me O’ Lord
We are closing in on the end of this pregnancy with our little rainbow baby. As we told you before, its a girl and we have decided on a name for her. Josephine Ruth Holtrop. Josephine is from Joseph in the bible. The meaning behind the name is "the Lord will bring many." To Jason and I, its reassuring after all we have been through. Jo, Joseph and Joe are family names on both sides of our family. The middle name Ruth also comes from the bible. Jason and I love the story of Ruth in the bible and how the Lord redeemed her and her family after tragedy and brought so many good things out of it. We feel the Lord has already redeemed us and blessed us tenfold since Esther passing.
We have been up to a lot of projects in the passed few months. Here are some of the pictures. We have had so much fun and time has flown by throughout all of it.
Wood shed and shed build out of reclaimed wood and materials
Before picture of our gas fireplace
A friend donated some great pieces of stone
New wood stove. Our average house temperature went from 64 to 79 degrees. We love it. It just meant a lot of hard work cutting trees and getting enough dry and wet wood for some years to come. The project is still not complete
Last week we flew to Mexico with some of my family members. This was a trip we were going to take last year at this time, but with Esther's condition we were unable to. Jason and I flew in a day before the rest of my family and both of us had an uneasy feeling in our hearts. Neither of us talked about it til the next day. We were at this same place 10 months ago as we grieved Esther death together. It had been a week since her death at that time and we cried our guts out as we grieved how much we missed being by her side fighting for her life. We laid our hopes, dreams and future for her at the cross trusting God knew what was best for us. We had no idea how our next days, months and years would consist of and whether or not we were capable of putting one step in front of the other. Our hearts were so heavy. It was hard to get out bed or even close our eyes at night feeling like we were still waking up from a bad dream. This was the deck of cards God dealt to us. Could we make it through?
Today marks 10 months since we have said goodbye. Since then, it amazing to see how much God has carried us. Its hard to think any of us are strong enough to make it through something so awful. But he carried us, redeemed us and has brought beauty in the midst of ashes. It wasn't until the last hour of our time in Mexico that we were able to come back to the beach and thank God again for Esther. We were so busy showing our family around, cooking, cleaning and reading books that time just flew. But we both knew we needed to spend time and give thanks to the Lord. Once again we thanked the Lord through teared stained faces. For his guidance, comfort and strength to see past it all and the new hope and blessing we have still growing safely inside of me.
The arch in Cabo
Morning sunrise over the resort
Prego belly shot for those that needed one.
Beautiful Sunset
I want to make one thing clear through... even though it sounds like we are doing so great there are still many days it hurts bad. Days I wake up after having an awful dream of Esther dying again. Running to find someone to save her as I somehow pulled off the lines of the ecmo machine and blood is going everywhere. We can't save her, no one can. Then there is watching a tv show that reminds you of what it looked like to see her dying. They are all too real. It doesn't affect you as much unless you have felt and seen what its like to go through something so painful and out of your control like we have.
It also surprises me that while I was pregnant with Esther, I personally never had dreams of her. I never had a dream of holding her or seeing her grow up. I know my husband did and his father did, but I didn't. Since then, I have had 3 dreams of Josephine. Of us holding her and trying to take care of her. The burden is lifted more and more when you can actually taste and dream of your future with your little girl. It is so reassuring. I wish I had moments like that with Esther. But I know she is here with us daily. Each time we get to see a beautiful sunset or whales jumping out of the water, or the sound of an owl hooting near by- I know its her and the Lord saying "we are right here Rhonda."
Lastly, I will leave you with this. This is something I found this morning on a grief site that I thought was really great. Its for those of you I run into and play a role in my life and wonder what is Rhonda really thinking. I added some more to it from my own personal experience:
I have never been good at telling others what I need.
Losing my daughter complicated my ability to ask for help rather than sharpening it.
If I could have given myself one thing to get me through, it would have been a voice to tell those closest to me what I will need most to get me through the days and years ahead…
I need to say her name without bringing everyone to tears or for people to not change the subject so quickly as if I never said anything at all. Its okay to talk about her. In fact talking about her allows me to let you know all that she meant to me and helps keeps the memories of her alive.
I need her life to be included in the count of children, grandchildren, nieces and nephews.
I need kindness on birthdays and understanding on holidays. All of them have been so painful as it is so easy for others to not even think or acknowledge what dreams and hopes we had to let go and the missing piece of her not being there with us.
I need to stay in bed and a reason to get out of it.
I need to talk endlessly and to let the phone ring.
I need an extra hug and respect for my space.
I need someone to ask how I’m doing and want to know the real answer.
I need a “handle with care” sticker for my heart, my emotions have been fragile since the day I said goodbye.
I need patience and reminders for my mind, part of it will always be somewhere else.
I need forgiveness for not being the friend, sister, daughter and wife I used to be…
a lifetime seems like such a long time to wait to hold my child again.
