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.
Rhonda and Jason
Sunday, December 18, 2011
Friday, December 16, 2011
Praise God!
Just wanted to say, Praise God! As Rhonda stated the other day, it seems Christ is so close to the point of almost overwhelming when we are broken or lost. I think it more likely that He is always so close and present; carrying us, guarding our heart, convicting and consoling. We just are too distracted most times, and it takes something to really jar us out of the normal process to notice Him there.
Just wanted to say, Thank You Father God for sending your Holy spirit to comfort, guide and protect us and I want to Praise You!
Just wanted to say, Thank You Father God for sending your Holy spirit to comfort, guide and protect us and I want to Praise You!
Rhonda's thoughts on the day we went to UW medical
Jason and I drove to University of Washington Medicine this Wednesday to have 3 meetings with doctors that would go on most of the day. While waiting in the waiting room for our first meeting, I pulled out My Utmost for his highest and came upon this. It was completely perfect for what we are going through:
This is exactly what Jason and I feel. Peace. Its unexplainable, being that we are in the circumstances that we are in. But we are going to lean in on the hope and trust that God knows what he is doing and it is out of our hands.
I was sad to find out our daughter has a left foot that is slightly a club foot. But was relieved that at least it wasn't something wrong with her heart. I know that a club foot could be taken care of surgically and no one would ever know she even had it. We also found out that the success rate at Children's hospital for children with CDH is 80-85% survival rate. I was reading information prior to coming to our appointment and the Internet was saying a 50% chance of survival for our daughter. This also gives me more peace. As Jason already said, we wont really know how our daughter will be till she is born. So we will just wait and pray and find peace in Gods sovereign plan. We have found so much strength and encouragement in our friends that we have told so far. Here is one message that someone had left me:
After that we went to Children's Hospital to see one of my dear friends who I worked with in detention. Her baby was born 9 weeks ago with complications also. I find it weird that we both worked on the same shift and both have babies with genetic abnormalities and a genetic fluke out of nowhere. Jason and I both left the hospital feeling more at peace realizing what we were going to have to go through. We feel like we learned the ins and outs of what our life will be like as we stay at Children's hospital and the NICU. We know that we have a long road ahead and will get through it with our friends and families support.
Rhonda
Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled . . . —John 14:27
Whenever we experience something difficult in our personal life, we are tempted to blame God. But we are the ones in the wrong, not God. Blaming God is evidence that we are refusing to let go of some disobedience somewhere in our lives. But as soon as we let go, everything becomes as clear as daylight to us. As long as we try to serve two masters, ourselves and God, there will be difficulties combined with doubt and confusion. Our attitude must be one of complete reliance on God. Once we get to that point, there is nothing easier than living the life of a saint. We encounter difficulties when we try to usurp the authority of the Holy Spirit for our own purposes.
God’s mark of approval, whenever you obey Him, is peace. He sends an immeasurable, deep peace; not a natural peace, “as the world gives,” but the peace of Jesus. Whenever peace does not come, wait until it does, or seek to find out why it is not coming. If you are acting on your own impulse, or out of a sense of the heroic, to be seen by others, the peace of Jesus will not exhibit itself. This shows no unity with God or confidence in Him. The spirit of simplicity, clarity, and unity is born through the Holy Spirit, not through your decisions. God counters our self-willed decisions with an appeal for simplicity and unity.
My questions arise whenever I cease to obey. When I do obey God, problems come, not between me and God, but as a means to keep my mind examining with amazement the revealed truth of God. But any problem that comes between God and myself is the result of disobedience. Any problem that comes while I obey God (and there will be many), increases my overjoyed delight, because I know that my Father knows and cares, and I can watch and anticipate how He will unravel my problems.
This is exactly what Jason and I feel. Peace. Its unexplainable, being that we are in the circumstances that we are in. But we are going to lean in on the hope and trust that God knows what he is doing and it is out of our hands.
I was sad to find out our daughter has a left foot that is slightly a club foot. But was relieved that at least it wasn't something wrong with her heart. I know that a club foot could be taken care of surgically and no one would ever know she even had it. We also found out that the success rate at Children's hospital for children with CDH is 80-85% survival rate. I was reading information prior to coming to our appointment and the Internet was saying a 50% chance of survival for our daughter. This also gives me more peace. As Jason already said, we wont really know how our daughter will be till she is born. So we will just wait and pray and find peace in Gods sovereign plan. We have found so much strength and encouragement in our friends that we have told so far. Here is one message that someone had left me:
Rhonda-
If there's ONE thing I don't quite grasp with God it is His SOVEREIGNTY. The fact that he goes before us. If God said to you today, "Rhonda, I need you to make a huge sacrifice personally, but the lives you will impact through this personal sacrifice of yours will be in the thousands of people for Christ. Are you willing?" I know without a shadow of a doubt what your answer would be. I also know that you are growing a piece of heaven inside you and for however long you get that piece of heaven-a lifetime or a short time, God is GOING to change lives through you. You and Jason are part of his SOVEREIGN plan. The miracles that you will see will astound you. You WILL see them because you my dear sister will be calling out to our Savior and He WILL answer. I love you lots.
If there's ONE thing I don't quite grasp with God it is His SOVEREIGNTY. The fact that he goes before us. If God said to you today, "Rhonda, I need you to make a huge sacrifice personally, but the lives you will impact through this personal sacrifice of yours will be in the thousands of people for Christ. Are you willing?" I know without a shadow of a doubt what your answer would be. I also know that you are growing a piece of heaven inside you and for however long you get that piece of heaven-a lifetime or a short time, God is GOING to change lives through you. You and Jason are part of his SOVEREIGN plan. The miracles that you will see will astound you. You WILL see them because you my dear sister will be calling out to our Savior and He WILL answer. I love you lots.
This is completely true.
I also received an amniocentesis at the end of our visit just to see if there was anything else that might be wrong with our little girl. So far they don't think she has down syndrome but we thought we would check to see if there is anything else wrong with her so that the team of surgeons is prepared when she is born.
I also received an amniocentesis at the end of our visit just to see if there was anything else that might be wrong with our little girl. So far they don't think she has down syndrome but we thought we would check to see if there is anything else wrong with her so that the team of surgeons is prepared when she is born.
We felt so encouraged by the staff at UW medicine and know that we are in the best hands ever.
Rhonda
Thursday, December 15, 2011
A song the Lord has put on our hearts
If my heart is overwhelmed and I cannot hear Your voice
I’ll hold on to what is true though I cannot see
If the storms of life they come and the road ahead gets steep
I will lift these hands in faith
I will believe
I remind myself of all that You’ve done
And the life I have because Your Son
Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours
When my heart is filled with hope
and every promise comes my way
When I feel Your hands of grace rest upon me
Staying desperate for You God
Staying humbled at Your feet
I will lift these hands and praise
I will believe
I remind myself of all that You’ve done
And the life I have because Your Son
Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours
I am Yours
I am Yours
All my days
I am Yours
I am Yours, I'm Yours forever
I am Yours, I'm Yours forever
I am Yours, I'm Yours forever Lord
Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours
This song brought me to tears in realizing how close our Lord is in times of trouble. There has never been a time in my life when God has not been faithful and proved how powerful and real he is. Through the deepest and darkest times of my life, he has shown his redeeming power in all of it. For this I can say today and every day- no matter how difficult this time is with our daughter and the unknown that is before us- I am his and forever is. I have received ETERNITY with him and there is nothing better. Thank you father for saving me and giving me the gift of life and the understanding that even though I want to say why me, why us- I can scream and cry and shout and lift my hands because we are forever his.
Wednesday, December 14, 2011
Psalm 139...
you rdiscern my thoughts from afar.
and ulay your hand upon me.
Or where yshall I flee from your presence?
aIf I make my bed in Sheol, you are there!
you fknitted me together in my mother's womb.
gWonderful are your works;
intricately woven in ithe depths of the earth.
in your jbook were written, every one of them,
David's expression and uncensored emotion toward God is such an amazing example of the personal relationship He wants with each one of us.
Somehow I am now stuck using the same font as this psalm I dragged off a website, but it works. Today we met with the "pros" at UW. Encouraged by their words, but still left in the dark a little. Seems there is only so much we can gauge prior to Esther's birth, and much of that is just guess work. There really aren't any hard statistics or averages to go off. When a child has this type of abnormality it generally restricts organs, such as the lungs, from developing properly. But it really makes no difference as many times a baby with underdeveloped lungs does remarkably well while at other times a baby with nearly fully developed lungs struggles and fails.
Guess we just have to trust in God, and allow Him to carry us.
Tuesday, December 13, 2011
Jason's thoughts on this CDH diagnosis
Don't really know how to start this, but felt the need to have a little father to be input that seems to be missing from any other blog we've seen. I'm not much on back story and build up, so forgive me as I hit the ground running.
Last Wednesday got a phone call after our ultra sound appointment. A Doc we don't know, and have never met, tells us "Sorry to be calling with this news, but your ultra sound showed the baby's heart displaced to the right side and this indicates a hernia in the diaphragm allowing intestines and the stomach into the chest cavity". I am a registered nurse and work in our local hospital. I have never heard of this before. My wife's co worker recently gave birth to a child whose abdominal contents developed outside of her body (I had heard of this) but this was the first I'd heard of "CDH".
We had planned a celebratory dinner with the opening of an envelope with a picture of the ultra sound that gave the sex of our baby. We went ahead with dinner and came home to the EVIL internet to be scared out of our minds (more me than her, she evidently didn't read the statistics I had).
We discussed the blessing God has given us in choosing us for this. Of course the inevitable selfish thoughts entered our heads as well (why us? so many have healthy babies who don't want or care for them blah, blah, blah), but we are committed to honoring Christ in this. I do not want to come across as self righteous or prideful in this. I only know what God's word commands me to do. No matter how difficult.
So I want you to know exactly what I have been feeling during this and see how God, His son Christ Jesus, and the Holy spirit are changing me and molding me into what I need to be.
Initially, looking at the internet, all I could do is visualize what our daughter is going to go through! To go from the comfort of my wife's body into stranger's hands. Not allowed to cry, but having a tube forced into her lungs, lines inserted into her umbilicus and drugs pouring into her system fogging out touch, sound, sight, smell. Born into immediate suffering? In my desire to defend her I was broken by helplessness.
When I told Rhonda about this, she calmly stated "I am just thankful for whatever God gives us with her. A minute, a day, year or years." And the spirit comforted me with those words.
Since those initial moments we have both had a hard day or two (tomorrow will be a week since the news) but can honestly feel the Lord with us. I lost my oldest brother nearly 9 years ago and remember vividly how the reality of the world seems to "thin" and the tangible nature of Christ through the Holy spirit is SO PRESENT.
Now we are commanded to bring our troubles and worry before the Lord and give them to Him "For who by worrying, can add another day to his life?" And that is what the Spirit has me focusing on now.
Today, our baby is healthy and safe in her mother's body. There is nothing the creator of all cannot accomplish. My will, may not be His, and His will is perfect, even if I'm unable to see the outcome of His plans.
Yesterday I was angry, couldn't help myself, kept fighting self pity and continued to seek God out in it.
Today was joyful, because God trusts me with His child, and I am honored.
Last Wednesday got a phone call after our ultra sound appointment. A Doc we don't know, and have never met, tells us "Sorry to be calling with this news, but your ultra sound showed the baby's heart displaced to the right side and this indicates a hernia in the diaphragm allowing intestines and the stomach into the chest cavity". I am a registered nurse and work in our local hospital. I have never heard of this before. My wife's co worker recently gave birth to a child whose abdominal contents developed outside of her body (I had heard of this) but this was the first I'd heard of "CDH".
We had planned a celebratory dinner with the opening of an envelope with a picture of the ultra sound that gave the sex of our baby. We went ahead with dinner and came home to the EVIL internet to be scared out of our minds (more me than her, she evidently didn't read the statistics I had).
We discussed the blessing God has given us in choosing us for this. Of course the inevitable selfish thoughts entered our heads as well (why us? so many have healthy babies who don't want or care for them blah, blah, blah), but we are committed to honoring Christ in this. I do not want to come across as self righteous or prideful in this. I only know what God's word commands me to do. No matter how difficult.
So I want you to know exactly what I have been feeling during this and see how God, His son Christ Jesus, and the Holy spirit are changing me and molding me into what I need to be.
Initially, looking at the internet, all I could do is visualize what our daughter is going to go through! To go from the comfort of my wife's body into stranger's hands. Not allowed to cry, but having a tube forced into her lungs, lines inserted into her umbilicus and drugs pouring into her system fogging out touch, sound, sight, smell. Born into immediate suffering? In my desire to defend her I was broken by helplessness.
When I told Rhonda about this, she calmly stated "I am just thankful for whatever God gives us with her. A minute, a day, year or years." And the spirit comforted me with those words.
Since those initial moments we have both had a hard day or two (tomorrow will be a week since the news) but can honestly feel the Lord with us. I lost my oldest brother nearly 9 years ago and remember vividly how the reality of the world seems to "thin" and the tangible nature of Christ through the Holy spirit is SO PRESENT.
Now we are commanded to bring our troubles and worry before the Lord and give them to Him "For who by worrying, can add another day to his life?" And that is what the Spirit has me focusing on now.
Today, our baby is healthy and safe in her mother's body. There is nothing the creator of all cannot accomplish. My will, may not be His, and His will is perfect, even if I'm unable to see the outcome of His plans.
Yesterday I was angry, couldn't help myself, kept fighting self pity and continued to seek God out in it.
Today was joyful, because God trusts me with His child, and I am honored.
Sunday, December 11, 2011
A little bit about us
Jason and I met in September of 2009 and got married September of 2010 one year and one day after our first date. We had both been waiting so much of our life to meet the right one. I became a Christian my freshmen year in high school, and have never wanted to settle or compromise the best of what God wanted for me. I stayed single for years hoping and praying for God to bring the right one into my life. Finally he came in the most unexpected way. My mom called me one day saying that she had found someone at her work that she wanted to set me up with. First of all, my mom and I aren't super close. So the idea of her setting me up with someone who she thought would be perfect for me made me super nervous. Second of all, my mom is a charge nurse and Jason works with her. I didn't, and still don't know of too many male nurses. So that made it hard for me to imagine what sort of a guy he might be. I decided to meet this guy a few days later. I brought my mom a coffee acting like that was all I was there for. My mom paged Jason to tell him she had a question for him. Jason showed up soon after and I immediately thought "no way. Not my type. He looks to old and he just didn't look that "outdoorsy" to me." I shook his hand as my mom introduced us and thought in my head, "seriously God? When am I going to find this guy I have been saving myself for and waiting my whole life for." I did not discuss meeting Jason with my mom in hopes that she would somehow be able to tell I wasn't into him. That did not work. My mom called 2 days later letting me know she gave him my number and he would be calling in a few days. To make a long story short, he asked me on a date the following week and we hit it off right away. He was more than outdoorsy, I couldn't believe how easy it was to be with him. I felt like we had been friends forever. I knew that first day, he was the one I was to marry and God had picked him for me. However, it took me a few months to believe that this really was the one. I wasn't attracted to Jason right away and was terrified to give him any piece of my heart unless I was sure I was going to be in love with him the rest of my life. Around Christmas time I fell head over heals for him and God assured me he was the one. I loved his heart and devotion to the Lord. I loved how patient and laid back he was. I loved hearing how he changed his life completely over to the Lord when his brother had died in a tragic accident and how he knew that his new direction in life was to be a nurse and that was completely for the Lord. He loves people and has more patience and grace for them then I can ever imagine. Jason never talks bad about other people and devotes his life to the Lord. In the fall of that year Jason said he wanted to run our first Marathon together. I laughed at him thinking- "yeah right, he has never even ran a race before." Well sure enough we signed up for that race and ran it with some of my friends. After our longest run we had ever done up to that point he proposed to me at Boulevard park as the sun was setting. I couldn't believe it. It was perfect timing and I was ready to spend the rest of my life with the one God totally had in store for me. We married September of 2010 and decided we needed to get on the baby making band wagon because we were up there in age - me 30 and Jason 37. But I needed to get one more marathon under my belt. We trained hard and ran the 2nd Marathon and most likely the last (we felt it was time to retire the hurt body after this one) in May of 2011. Now it was onto baby making business. I didn't know if it was going to be hard or easy but I knew my family had never had problems having babies. You see I come from a family of 5 girls and you got that right two sets of twins. My oldest sister Julie lives in Wenatchee and is 7 yrs older than me. My other two sisters who are twins live in Ferndale and Lynden and are 5 yrs older than me and are identical twin sisters. Lastly there is me and my twin sister Rachel. She lives in Philadelphia and we are completely fraternal twins and look nothing alike. Having kids was no problem in my mom and dads families. On Jason's side of the family he has one brother and they tried twice in the last few years and she lost both of the babies early.
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