Today is March 15th. On January 15th, 2003, we had a memorial service for our son, J.D. Five years and two months ago. I don't obsess on the 15th of every month. :) In 2003 and 2004 I recognized each date, each month that coincided with milestones, positive and negative, that we went through with the twins. Now I can, at times, go months with out consciencely thinking about these events. I always carry them with me in my heart, but no longer is there a raw pain that inhibits my ability to breathe.
For some of you this post is filled with things you already know and have heard 10,000 times. :) You may just disregard it if that is the case. Wordy Wendi has come out today and she is in a reflective mood. Watch out people! Seriously though, I have decided to change my blog setting from 'invitation only', to allowing open access. My hope is that if there are others who have special needs children, or have lost a child, some of what we have gone through may be able to be helpful. If you know of any one who could benefit from our stories, feel free to pass it on.
This is some of the journey that God has brought us through from our story of premature birth and loss.
In August of 2002 my husband David and I found out we were expecting a baby. We had been married for about 18 months and were positively elated!! We felt very ready to become parents.
At a routine ultra sound at 6 weeks we found out that I was expecting twins. When I was 16 weeks along we found out that the babies were both boys. Our joy was immeasurable! We both love children and anxiously awaited the birth of our sons.
My due date was April 11th. On December 21st I was put on bed rest at home and told to stay put. I was disappointed to cancel our traveling plans to spend Christmas with my family. I didn't realize how serious it was. My cervix was "funneling" – opening when my belly was pushed on. I was 23 weeks pregnant when I was put on bed rest at home. A week later I was admitted to a hospital an hour away that had the best NICU in the area. I was dilated 2 cm. and contracting every 10 minutes.
At the large hospital I was hooked up to monitors, I.V.s, and given many medications to try to stop labor. It worked for one week. After being on bed rest in the hospital for a week I began having contractions again. They got steadily stronger, and no matter how much the Dr.s increased my medications, they would not go away.
At 5:00 pm on January second I was found to be completely dilated and completely effaced. I was 25 weeks along. We were so scared. All of this had been so unexpected and shocking! At 10:40pm our precious baby J.D. came into the world weighing 1 lb. 12 oz. and 13 ½ in. long. At 10:46pm. Baby K came into the world. A beautiful baby boy only 1 lb. 8 oz. and 13 ¼ in. long. They both cried little puppy-like whimpers right away. It was wonderful to hear the cries, but such a scary entrance into parenthood!
Both boys did amazingly well at first. They were able to breathe on their own for a while and seemed pretty strong for such tiny, dangerously premature, babies. We were later told that this was the "honey moon stage" – that most premature babies can do okay for a while as they still have reserves to draw on from life in the womb. After the first 24 hours things did take a turn for the worse. They got very tired and had to go from the CPAP (continuous positive airway pressure) to ventilators.
We were really in shock for a while. There was so much to take in. We went from numbness to wanting to glean as much information as we possibly could. It was very overwhelming. We joke that we both got a crash course in the medical field! There is so much to learn and process.
I was not able to hold my babies for the first week and my arms ached for that! Our little Baby K was extremely sick and struggled to hang on to life. At three days of age he suffered a grade IV brain bleed. The Dr.s said that if the grading system went up any higher, they certainly would've graded his bleed higher. It was one of the worst they had seen. He had severe apnea and bradychardia (he would stop breathing and his heart rate would take a dive). We couldn't even open the door to his issolette with out his heart rate dipping dangerously low. He had to be "hand bagged" a lot to stimulate breathing again. He would forget to breathe often and turn blue. These things are so scary to go through for any parent, but especially a first time parent.
God sent encouragement to me in many ways during this trying time. Loving friends and family, hugs, cards, prayers, warm meals, and so much more! I remember being so comforted by the out pouring of love all around us. It was an overwhelming of another kind. Even in the most difficult of circumstances, our Heavenly Father is there holding us up, showing us his love!
Finally one of the most encouraging things happened since the beginning of our scary experience. At 7 days of age my baby J.D. was able to be nestled in my arms. For 10 minutes I balanced a ventilator tube, monitor wires, and I.V. tubes as I held my first born son for the first time! How I had longed for that moment. It felt like I was just holding a little blanket!
J.D. continued to hold his own pretty well and we thanked God for that! He was tolerating small amounts of my expressed breast milk. His previously unclosed heart artery was finally responding well to medication. He only had a very minor brain bleed. Baby K, on the other hand, remained in very critical condition. We were not able to even touch his tiny body.
It was with shock and grief that we unexpectedly watched our J.D. slipping away from us! At 8 days of age his body began to show signs of infection. All ventilator settings had to be turned up as much as they could. As the infection really set in we were beginning to realize that his tiny body just did not have the components necessary to fight it off. He had N.E.C., a perforated intestine. Impurities filed his body, He quit going to the bathroom when he was a week old. I have never prayed so much over going to the bathroom as I did those days! His body swelled up as he retained the fluid that should have been coming out. He was put on a high frequency ventilator and given morphine for pain. My heart hurt to watch this happen!
The Dr.s were wonderful and did all they possibly could do for J.D. He had a surgery to place a small drain in his body, but that was unsuccessful. At ten days of age J.D. was really just a shell – a body that we were keeping alive because the alternative was just so heart breaking and unthinkable to us! J.D. was in pain. The Dr.s sat us down and told us that they had really done all that they could. They had made valiant efforts for our little boy and for that we will forever be grateful. They said they could keep him alive for one, maybe two weeks, but it would just be putting off the inevitable. We knew he was gone. We faced the hardest thing, I think, any parent will ever have to face; the decision to take a child off life support.
We prayed earnestly most of the day. We sought godly counsel, talked to the Dr.s, and then invited close family and friends to the NICU to say good bye. We took turns holding and rocking Joshua. He opened his eyes for the first time that day and showed us beautiful blue eyes that looked so much like David’s. At 8:30 pm we asked every one to leave the NICU. We removed J.D from life support and held him in a private room. I was finally able to hold my baby, tube free and wire free. The way I had dreamed of before the nightmare had begun. My baby boy was in my arms and I remember just not wanting to let go. It was all too final. I knew if I gave him back to the nurses it would all be over. We are petty sure that he had died right away after being removed from the ventilator.
David and I were given an unexpected and unexplainable peace that night. After handing J.D back to the nurses we went out side. It was a clear, and cold January night. The stars were so bright. We stared up into that clear sky and were in awe at the thought that our child was with Jesus at that very moment!
Now, to be completely truthful, I have to say that the very special peace we encountered the night we said good bye to J.D. was not some thing that we received and retained forever! The next day was so heart wrenching that I didn't know how we would make it through. God seemed to give just enough grace, just enough peace, just enough energy and sanity to make it through each moment. Never has our faith been so challenged as at that time! There were, and at times still are so many questions. Some things are finally beginning to make some sense. At times I get a little glimpse of some of those answers, but I know alot of these questions may not be answered. At first it all seemed so pointless. Why give us two babies just to take one? Why have ten promising days with J.D., the healthy one, only to have him snatched from us? Why pray until you are physically, spiritually, and emotionally exhausted, only to have those prayers go, seemingly, unanswered?
I in no way am claiming to have the answers and be any kind of an expert, but this is what I have learned. When I don't know what to think I focus on what I know. I do not question the character of God. I believe that God is good no matter what. He is kind and just. He loves us beyond our wildest imaginations. He rejoices with us and he weeps with us. He has experienced every type of grief that we have and he knows what we are feeling even before we feel it. We live in a fallen world, and unfortunately will not experience perfection until eternity with Him. God does answer prayer, just not the way we want or expect him to at times. We see such a small picture. God sees the big picture. He sees what is best for us and, ultimately, what brings glory to himself. He is shaping us to be more like him with each passing day, with each experience, with each journey that he leads us on.
What I needed to do was give myself time to grieve. I carried J.D. for 6 months in my body. We bonded in that very special way that God designed for a mother and a child. David and I prepared for two children and deeply wanted both of them. We grieved lost dreams and "if only's". It may sound cliché, but time really is a healer. We will never forget J.D. and a part of us will forever grieve this loss, but there came a time when we realized that we could breathe again. There came a time when thoughts of our short time together began to bring a certain joy to our hearts and put a little smile on our faces. I also had times when I thought I was doing pretty well and I would suddenly burst into tears. A song, a scent, a certain memory would blow me away with emotion. I learned to let it happen, I believe it is all a normal and healthy part of the grieving process. Tears can be very healing.
I hold lovingly to each memory I have of J.D. I Cherish the little things! One of my favorite memories was the way that J.D. would hold onto my finger. He had a strong grip for such a little guy! His hand was about the size of my thumb nail. The picture of J.D. that I have on the right column of this blog documents that moment. I also have that picture framed, on my wall. On mother's day one year Dave got me a ring that has J.D.'s name engraved on the front along with littel footprints. On the inside it has an engraving, "It was then that I carried you". I also have a plaque with his name and the meaning of his name hanging on our wall, along with the rest of our family names. I made a scrap book, documenting our days with J.D, and also found that very healing. It was about 6 months until I was able to do those things, as it was just too hard to feel the emotions they brought up at first.
I think I will always feel that a "puzzle piece" to our family is missing. J.D. and Baby K were identical twins, so it is with bittersweet feelings that we watch K grow up, in one sense, alone. Birthdays tend to be emotional! With the two additions to our family since J.D. and Baby K’s birth, we have had so much hope and joy fill our lives. Although J.D. can not be replaced and will always retain a unique place in our family, we do feel a certain redeeming element to having these three boys and watching them interact and grow together.
My due date was April 11th. On December 21st I was put on bed rest at home and told to stay put. I was disappointed to cancel our traveling plans to spend Christmas with my family. I didn't realize how serious it was. My cervix was "funneling" – opening when my belly was pushed on. I was 23 weeks pregnant when I was put on bed rest at home. A week later I was admitted to a hospital an hour away that had the best NICU in the area. I was dilated 2 cm. and contracting every 10 minutes.
At the large hospital I was hooked up to monitors, I.V.s, and given many medications to try to stop labor. It worked for one week. After being on bed rest in the hospital for a week I began having contractions again. They got steadily stronger, and no matter how much the Dr.s increased my medications, they would not go away.
At 5:00 pm on January second I was found to be completely dilated and completely effaced. I was 25 weeks along. We were so scared. All of this had been so unexpected and shocking! At 10:40pm our precious baby J.D. came into the world weighing 1 lb. 12 oz. and 13 ½ in. long. At 10:46pm. Baby K came into the world. A beautiful baby boy only 1 lb. 8 oz. and 13 ¼ in. long. They both cried little puppy-like whimpers right away. It was wonderful to hear the cries, but such a scary entrance into parenthood!
Both boys did amazingly well at first. They were able to breathe on their own for a while and seemed pretty strong for such tiny, dangerously premature, babies. We were later told that this was the "honey moon stage" – that most premature babies can do okay for a while as they still have reserves to draw on from life in the womb. After the first 24 hours things did take a turn for the worse. They got very tired and had to go from the CPAP (continuous positive airway pressure) to ventilators.
We were really in shock for a while. There was so much to take in. We went from numbness to wanting to glean as much information as we possibly could. It was very overwhelming. We joke that we both got a crash course in the medical field! There is so much to learn and process.
I was not able to hold my babies for the first week and my arms ached for that! Our little Baby K was extremely sick and struggled to hang on to life. At three days of age he suffered a grade IV brain bleed. The Dr.s said that if the grading system went up any higher, they certainly would've graded his bleed higher. It was one of the worst they had seen. He had severe apnea and bradychardia (he would stop breathing and his heart rate would take a dive). We couldn't even open the door to his issolette with out his heart rate dipping dangerously low. He had to be "hand bagged" a lot to stimulate breathing again. He would forget to breathe often and turn blue. These things are so scary to go through for any parent, but especially a first time parent.
God sent encouragement to me in many ways during this trying time. Loving friends and family, hugs, cards, prayers, warm meals, and so much more! I remember being so comforted by the out pouring of love all around us. It was an overwhelming of another kind. Even in the most difficult of circumstances, our Heavenly Father is there holding us up, showing us his love!
Finally one of the most encouraging things happened since the beginning of our scary experience. At 7 days of age my baby J.D. was able to be nestled in my arms. For 10 minutes I balanced a ventilator tube, monitor wires, and I.V. tubes as I held my first born son for the first time! How I had longed for that moment. It felt like I was just holding a little blanket!
J.D. continued to hold his own pretty well and we thanked God for that! He was tolerating small amounts of my expressed breast milk. His previously unclosed heart artery was finally responding well to medication. He only had a very minor brain bleed. Baby K, on the other hand, remained in very critical condition. We were not able to even touch his tiny body.
It was with shock and grief that we unexpectedly watched our J.D. slipping away from us! At 8 days of age his body began to show signs of infection. All ventilator settings had to be turned up as much as they could. As the infection really set in we were beginning to realize that his tiny body just did not have the components necessary to fight it off. He had N.E.C., a perforated intestine. Impurities filed his body, He quit going to the bathroom when he was a week old. I have never prayed so much over going to the bathroom as I did those days! His body swelled up as he retained the fluid that should have been coming out. He was put on a high frequency ventilator and given morphine for pain. My heart hurt to watch this happen!
The Dr.s were wonderful and did all they possibly could do for J.D. He had a surgery to place a small drain in his body, but that was unsuccessful. At ten days of age J.D. was really just a shell – a body that we were keeping alive because the alternative was just so heart breaking and unthinkable to us! J.D. was in pain. The Dr.s sat us down and told us that they had really done all that they could. They had made valiant efforts for our little boy and for that we will forever be grateful. They said they could keep him alive for one, maybe two weeks, but it would just be putting off the inevitable. We knew he was gone. We faced the hardest thing, I think, any parent will ever have to face; the decision to take a child off life support.
We prayed earnestly most of the day. We sought godly counsel, talked to the Dr.s, and then invited close family and friends to the NICU to say good bye. We took turns holding and rocking Joshua. He opened his eyes for the first time that day and showed us beautiful blue eyes that looked so much like David’s. At 8:30 pm we asked every one to leave the NICU. We removed J.D from life support and held him in a private room. I was finally able to hold my baby, tube free and wire free. The way I had dreamed of before the nightmare had begun. My baby boy was in my arms and I remember just not wanting to let go. It was all too final. I knew if I gave him back to the nurses it would all be over. We are petty sure that he had died right away after being removed from the ventilator.
David and I were given an unexpected and unexplainable peace that night. After handing J.D back to the nurses we went out side. It was a clear, and cold January night. The stars were so bright. We stared up into that clear sky and were in awe at the thought that our child was with Jesus at that very moment!
Now, to be completely truthful, I have to say that the very special peace we encountered the night we said good bye to J.D. was not some thing that we received and retained forever! The next day was so heart wrenching that I didn't know how we would make it through. God seemed to give just enough grace, just enough peace, just enough energy and sanity to make it through each moment. Never has our faith been so challenged as at that time! There were, and at times still are so many questions. Some things are finally beginning to make some sense. At times I get a little glimpse of some of those answers, but I know alot of these questions may not be answered. At first it all seemed so pointless. Why give us two babies just to take one? Why have ten promising days with J.D., the healthy one, only to have him snatched from us? Why pray until you are physically, spiritually, and emotionally exhausted, only to have those prayers go, seemingly, unanswered?
I in no way am claiming to have the answers and be any kind of an expert, but this is what I have learned. When I don't know what to think I focus on what I know. I do not question the character of God. I believe that God is good no matter what. He is kind and just. He loves us beyond our wildest imaginations. He rejoices with us and he weeps with us. He has experienced every type of grief that we have and he knows what we are feeling even before we feel it. We live in a fallen world, and unfortunately will not experience perfection until eternity with Him. God does answer prayer, just not the way we want or expect him to at times. We see such a small picture. God sees the big picture. He sees what is best for us and, ultimately, what brings glory to himself. He is shaping us to be more like him with each passing day, with each experience, with each journey that he leads us on.
What I needed to do was give myself time to grieve. I carried J.D. for 6 months in my body. We bonded in that very special way that God designed for a mother and a child. David and I prepared for two children and deeply wanted both of them. We grieved lost dreams and "if only's". It may sound cliché, but time really is a healer. We will never forget J.D. and a part of us will forever grieve this loss, but there came a time when we realized that we could breathe again. There came a time when thoughts of our short time together began to bring a certain joy to our hearts and put a little smile on our faces. I also had times when I thought I was doing pretty well and I would suddenly burst into tears. A song, a scent, a certain memory would blow me away with emotion. I learned to let it happen, I believe it is all a normal and healthy part of the grieving process. Tears can be very healing.
I hold lovingly to each memory I have of J.D. I Cherish the little things! One of my favorite memories was the way that J.D. would hold onto my finger. He had a strong grip for such a little guy! His hand was about the size of my thumb nail. The picture of J.D. that I have on the right column of this blog documents that moment. I also have that picture framed, on my wall. On mother's day one year Dave got me a ring that has J.D.'s name engraved on the front along with littel footprints. On the inside it has an engraving, "It was then that I carried you". I also have a plaque with his name and the meaning of his name hanging on our wall, along with the rest of our family names. I made a scrap book, documenting our days with J.D, and also found that very healing. It was about 6 months until I was able to do those things, as it was just too hard to feel the emotions they brought up at first.
I think I will always feel that a "puzzle piece" to our family is missing. J.D. and Baby K were identical twins, so it is with bittersweet feelings that we watch K grow up, in one sense, alone. Birthdays tend to be emotional! With the two additions to our family since J.D. and Baby K’s birth, we have had so much hope and joy fill our lives. Although J.D. can not be replaced and will always retain a unique place in our family, we do feel a certain redeeming element to having these three boys and watching them interact and grow together.
Thank you God, for good memories. For the painful memories that helped shape us into who we are today. For giving us a glimpse of true suffering, true love, and true redemption.
13 comments:
Wendi,
Found you through the comments on my blog, so sweet. This post is beyond honest and real. Thank you for you open heart about your boys, and about your loss. Getting to a place where you can thand God for the painfull things isn't overnight, but so glad that your there.
Thanks for sharing your story.. I will be back again, and again.
I have known parts of your story through my cousin, but to hear it in your words is so touching and your strength through the power of God is so evident. God bless you!
So, so beautiful Wendi. He is the God who gives, and takes away...your testimony and realness is such a ministry...today I will be praying that God brings those across your path who you can love on, and can love on you too :)
I found you through Mommy Motivation and have been truly blessed by your story. I also read your poem and "My Grace is Sufficient" is EXACTLY what I needed to hear today. Hugs to you. I can't imagine what you've been through but please know that you will be in my prayers.
Thank you for opening your heart and soul. That was a beautiful story and I appreciate honesty.
I just don't know where to begin -
Amazing how people can cross paths, sharing similar stories.
I appreciate your strength, your clarity, honesty and your faith.
Thank you, thank you and thank you!
Matt
What an incredible story of God's miracles, some in ways that are so hard to see, but miracles none the less.
How precious is your heart.. and a memory of a sweet little boy...
I learned today that I will begin to take care of babies and children through our Hospice program. So I find reading through your feelings very helpful.
I can't imagine what you feel but it will help me know how to approach someone in the future.As soon as we know a baby is going to pass we will go in and help the families.
I'm sure I can learn a lot from you.
Blessings to you and your sweet family...
Connie
Wendi,
I'm finally getting chance to look back at your story (more than just the most recent posts) after you left a comment on my blog. Thanks for sharing the story of your son, your words have blessed me today!
Ashley
Oh gosh, Wendi. I just read this post about J.D. What a precious little boy! My heart hurts so bad for you and your husband and K, but I am praising Him that He has carried you all through this, and what a testimony you have! I'm adding you to my blogroll because I want to read more of what you have to share. You seem like an amazing person and I can't wait to get to "know" you better!
God Bless!
Hi Wendi,
I just happened upon your blog when a friend linked it from hers. Thank you for sharing your story. My husband and I had twin sons born at 23 1/2 weeks. Joshua Michael was born March 18, 2003 and Jonah David was born the following day (is this around the same time that K & JD were born?). Josh lived for 2 days and Jonah for 30 days. Jonah passed away from complications associated with NEC, as JD did. As I read your story there were so many similarities with our own experience. One of your comments about loving the boys "to the moon and back" reminded me of "Guess How Much I Love You" and made me wonder it was a special book for your family as well. We read it to our boys several times a day in the NICU.
Because of our faith we know that one day we'll again see our little Josh and Jonah in Heaven :)
I would love to connect with you and hear more about both your precious sons. Please feel free to email me if you'd like (lcgomes@shaw.ca).
Lezlie
I enjoyed your post, what a lovely tribute to your son. I can relate. Our son was born full term, but lived just one moment. He lived long enough to take a breath and Blink at his daddy. It's been almost eight months, but in some ways still feels like yesterday. Love to you and your sweet family.
I just wanted to let you know that right now I am praying for you. What a deep loss! I admire the fact that you held on to your faith!
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