We are celebrating Kai's birthday by doing a Random Act of Kindness in memory of him on January 31st. What better way to celebrate our little man than to show God's love to others!?!
We are inviting everyone (far and near) to find a special way to show kindness and love to someone on January 31st!
We've typed up a small letter which briefly describes Kai's story and
salvation. Please
feel free to print it out and give it to the recipient of your Random
Act of Kindness! You can find the letter here. Just copy and paste into a word document, to print.
Once you've done your Random Act of Kindness
on January 31st, please tell us about it! We would love to see how
God's love was shown to others!
If you are interested, join us on our Facebook group, Kindess 4 Kai.
If you have any questions, please feel free to ask! =)
Showing posts with label kai. Show all posts
Showing posts with label kai. Show all posts
Wednesday, January 29, 2014
Wednesday, July 31, 2013
Six Months...
I can not believe that six months have gone by since I've held my baby boy. Some days, out of the blue, the tears come. I see something that makes me think of Kai and it makes me long to hold his little frail body. Sometimes, from no where, my arms feel empty all of a sudden. I have to go to God's word to pull me out of it at times. Other times, what starts out as a cry, ends up with smiles and thinking back on sweet memories. Emotions can be funny things... all over the place - up, down, sideways, you name it! But my God is the SAME, always! He has been there to give me strength every day! It was around this time last year, that my complete dependence on God began. It was the first time in my life that I realized I was ENTIRELY dependent on Him. That has not changed. Not only with our situation with Kai, but with everyday life, I NEED him. When I am willing to admit that, my life runs so much smoother. I am a stubborn one, so I believe it was some relief to God that I finally have figured that out after all these years!
God is still doing an amazing work through Kai. That little guy has changed me forever and I pray that God continues to change me through him. It's a comforting thought that someone so tiny had such a HUGE positive impact on our lives.
We decided early on that we were not going to do the "what if's" or "would've been's" with Kai. At Easter, we didn't say "just think, this would've been Kai's first Easter". On vacation, we didn't mumble "what if Kai didn't pass away? He could've been here with us". It was never God's plan for Kai to live beyond those 4 hours and 33 minutes. God created Kai to be exactly who he was for the exact time that he was here. Kai was never meant to spend his first Easter on this earth, so why would we mourn that? I am definitely not saying anything is wrong with doing the "what if's", I am just simply saying it is not right for our family in this situation. It has truly helped with the healing process. We want to feel like Kai added to our life, not took away from it!
We do choose however to keep his sweet little picture up throughout our house and to talk about his perfect life every chance we get. Every time I walk by his picture or it pops up on my computer, it makes me smile so big. (Didn't he have the cutest little face!?!?)
We visit his grave every now and then, but honestly, I don't feel a connection to him there. My connection with Kai takes place every morning when I talk to God. I know it sounds corny, but I feel so close to Kai during that time. Not a day has gone by that I do not thank God for Kai and the work that he has done through him, in me and in others.
We still have people approach us every now and then when we are out and about. It is a blessing! Complete strangers have come up to us at the store saying, "You don't know me, but I followed your story about your little baby and it had such an impact on my life.". And then some people say "You are awesome for the way you handled that situation!". Those words just make me cringe though, because the truth is, I am not at all awesome. I am a weak, completely imperfect human that messes up daily, but I have a God who is awesome! He uses my weakness to show His amazing power! (2 Corinthians 12:9 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness...") Who would've thought that God could bring such good out of a tragedy that I wouldn't wish on anybody? Yet in the end, I wouldn't have traded it in for the world. The thought of NOT having Kai in my life, even if it was for just a short time, saddens me. God knew what was best. I didn't. I never would've chosen this for our family, but I am glad He did.
I hope that I can be better about blogging now. I had this silly thought that once summer hit, I would have "extra" time to sit down and write! Ha! We've had lots of excitement and great stuff happening in our family and I hope to add it to the blog soon! =)
God is still doing an amazing work through Kai. That little guy has changed me forever and I pray that God continues to change me through him. It's a comforting thought that someone so tiny had such a HUGE positive impact on our lives.
We decided early on that we were not going to do the "what if's" or "would've been's" with Kai. At Easter, we didn't say "just think, this would've been Kai's first Easter". On vacation, we didn't mumble "what if Kai didn't pass away? He could've been here with us". It was never God's plan for Kai to live beyond those 4 hours and 33 minutes. God created Kai to be exactly who he was for the exact time that he was here. Kai was never meant to spend his first Easter on this earth, so why would we mourn that? I am definitely not saying anything is wrong with doing the "what if's", I am just simply saying it is not right for our family in this situation. It has truly helped with the healing process. We want to feel like Kai added to our life, not took away from it!
We do choose however to keep his sweet little picture up throughout our house and to talk about his perfect life every chance we get. Every time I walk by his picture or it pops up on my computer, it makes me smile so big. (Didn't he have the cutest little face!?!?)
We visit his grave every now and then, but honestly, I don't feel a connection to him there. My connection with Kai takes place every morning when I talk to God. I know it sounds corny, but I feel so close to Kai during that time. Not a day has gone by that I do not thank God for Kai and the work that he has done through him, in me and in others.
We still have people approach us every now and then when we are out and about. It is a blessing! Complete strangers have come up to us at the store saying, "You don't know me, but I followed your story about your little baby and it had such an impact on my life.". And then some people say "You are awesome for the way you handled that situation!". Those words just make me cringe though, because the truth is, I am not at all awesome. I am a weak, completely imperfect human that messes up daily, but I have a God who is awesome! He uses my weakness to show His amazing power! (2 Corinthians 12:9 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness...") Who would've thought that God could bring such good out of a tragedy that I wouldn't wish on anybody? Yet in the end, I wouldn't have traded it in for the world. The thought of NOT having Kai in my life, even if it was for just a short time, saddens me. God knew what was best. I didn't. I never would've chosen this for our family, but I am glad He did.
I hope that I can be better about blogging now. I had this silly thought that once summer hit, I would have "extra" time to sit down and write! Ha! We've had lots of excitement and great stuff happening in our family and I hope to add it to the blog soon! =)
Tuesday, March 5, 2013
Time for Healing
I can't believe how the time has flown these last (almost) 6 weeks. The healing that is taking place is good. I feel like God has my heart "bubble-wrapped" right now. I have been able to think of Kai and look at his sweet pictures and it brings happiness to my heart. It's still a necessity to pray daily and ask God for strength... Strength to focus on God's plan for my life, strength to focus on eternity and not earthly things, strength to be happy with what we have and not to ponder on what we "lost".
It's been nice to have people talk about our little Kai and what positive impact this situation has had on them. Even though it can bring tears at times, we would so much rather talk about him and remember him, than to just not say anything just in case they hurt our feelings.
God is doing a work in my heart still. I love that He is still right here beside me. I love how He guides and directs my life to where it needs to be, from what book of the bible I am reading through to the people that He puts in our paths, just at the right place and the right time.
Thinking back, it's amazing to see how God has been preparing me for this trial months, if not years ago. About 5 months before we got Kai's diagnosis of T18, one of my friends posted a prayer request on a private FB board. She asked us to pray for her baby girl that she was pregnant with. She had just found out that her baby had a very serious heart condition. The outlook was not good and much medical intervention would need to take place immediately once she was born. My heart absolutely broke for her. I cried as I prayed, I struggled with this so much. I can remember saying to my husband, "I could never go through something like that. It would be just too hard, I am afraid I would just lose my mind." I prayed for her and her precious little girl and the whole time she was going through her trial, she was such an excellent testimony for Christ. As I watched her go through the birth and eventually the death of her daughter, I was amazed that she could keep praising God. It was something that I didn't understand, but it encouraged me to keep moving forward with my personal walk with Christ. I knew that it had to be God giving her this strength but I felt that if I was in that situation, I could never get through it, let alone praise God while going through it.
I can also remember the week we found out that Kai may have some problems. From the point we got the results back from the 1st test until we found out that he definitely had T18, there was about a 3 week waiting period. During those 3 weeks, God spoke to me in every way. In the morning, I was reading in
I sat in sermon after sermon, that spoke directly to me... "Cast all your cares upon God"
After our amnio, which was the final "test", we had a 3 day waiting period before we would receive the results. During the sonogram that took place right before the amnio the doctors saw several red flags for T18. We left the office that day knowing in our hearts that He had it. After soaking it in for about 24 hours and doing a lot of praying, I told Dave that I really felt like we could handle this, we were going to be ok. The one thing that I worried about though, was "how" to tell people? I knew it wasn't going to be a one time thing, it would have to be told and retold over and over again. It seems funny, now that we have been though it, but I just really felt like I wasn't sure "how" to deliver the news to people, time after time. Would there be tears every time? Would we have to tell people in the middle of Walmart? What about strangers that ask about my pregnancy, do we tell them? Are we going to sound depressing when we tell people? Do we sound hopeful or do we tell them how grim the diagnosis is?
I honestly don't know how I would've made it through if my personal relationship with God wasn't as where it needed to be when this all started. The thought of not being prepared is such a scary thought to me. I don't know how anyone can be prepared to say Goodbye to their baby, just shortly after they meet that baby. It's not humanly possible, but it's possible for God to do that preparation!
It's been nice to have people talk about our little Kai and what positive impact this situation has had on them. Even though it can bring tears at times, we would so much rather talk about him and remember him, than to just not say anything just in case they hurt our feelings.
God is doing a work in my heart still. I love that He is still right here beside me. I love how He guides and directs my life to where it needs to be, from what book of the bible I am reading through to the people that He puts in our paths, just at the right place and the right time.
Thinking back, it's amazing to see how God has been preparing me for this trial months, if not years ago. About 5 months before we got Kai's diagnosis of T18, one of my friends posted a prayer request on a private FB board. She asked us to pray for her baby girl that she was pregnant with. She had just found out that her baby had a very serious heart condition. The outlook was not good and much medical intervention would need to take place immediately once she was born. My heart absolutely broke for her. I cried as I prayed, I struggled with this so much. I can remember saying to my husband, "I could never go through something like that. It would be just too hard, I am afraid I would just lose my mind." I prayed for her and her precious little girl and the whole time she was going through her trial, she was such an excellent testimony for Christ. As I watched her go through the birth and eventually the death of her daughter, I was amazed that she could keep praising God. It was something that I didn't understand, but it encouraged me to keep moving forward with my personal walk with Christ. I knew that it had to be God giving her this strength but I felt that if I was in that situation, I could never get through it, let alone praise God while going through it.
I can also remember the week we found out that Kai may have some problems. From the point we got the results back from the 1st test until we found out that he definitely had T18, there was about a 3 week waiting period. During those 3 weeks, God spoke to me in every way. In the morning, I was reading in
I sat in sermon after sermon, that spoke directly to me... "Cast all your cares upon God"
After our amnio, which was the final "test", we had a 3 day waiting period before we would receive the results. During the sonogram that took place right before the amnio the doctors saw several red flags for T18. We left the office that day knowing in our hearts that He had it. After soaking it in for about 24 hours and doing a lot of praying, I told Dave that I really felt like we could handle this, we were going to be ok. The one thing that I worried about though, was "how" to tell people? I knew it wasn't going to be a one time thing, it would have to be told and retold over and over again. It seems funny, now that we have been though it, but I just really felt like I wasn't sure "how" to deliver the news to people, time after time. Would there be tears every time? Would we have to tell people in the middle of Walmart? What about strangers that ask about my pregnancy, do we tell them? Are we going to sound depressing when we tell people? Do we sound hopeful or do we tell them how grim the diagnosis is?
I honestly don't know how I would've made it through if my personal relationship with God wasn't as where it needed to be when this all started. The thought of not being prepared is such a scary thought to me. I don't know how anyone can be prepared to say Goodbye to their baby, just shortly after they meet that baby. It's not humanly possible, but it's possible for God to do that preparation!
Thursday, February 21, 2013
Through the Smiles and Tears...
It's been 3 weeks since Kai left our arms to be
with his heavenly father. For the most part, I can't believe how fast
the time has gone by. I really thought that the days would drag for a
while, making me wish I could fast forward time. It hasn't been like
that at all and in a way, I feel sad that Kai's birthday is slipping
farther away. Sometimes, I worry that I will forget the details of that
day or that maybe people will forget to pray for us as time goes on.
BUT I know the ONE that will never forget about us, the ONE that
promises to be by our side and He knows each and every one of our
sorrows. He is the same ONE that created this complex universe (and maintains it!) and the
same ONE that saves us from an eternal place called hell. He is mighty,
powerful and sovereign, but He is also gentle, loving, forgiving, and capable of doing everything
and anything for us! Sometimes I need that reminder that I can cast ALL
of my cares on Him! Why do we tend to forget that our God who saved us
from eternal damnation is the same God that can take care of our piddly
worries of the day!? He can handle it if we just give it to Him!
Psalm 55:22 Cast your cares on the Lord and He will sustain you; He will never let the righteous be shaken.
It's funny how our feelings can be so unpredictable at times. Most of the time, I can't help but smile when I think of beautiful little Kai, which is so very often. I am so grateful for the many prayers that were answered and I feel like I am truly ok with the outcome of our journey, because of course, it was God's perfect plan. But then there are times that I just wanna cry. I want to just sit (and pout) and wish I could cuddle my baby boy up on my chest. I wish he would wake me up in the middle of the night to feed him. I wish I could stare at his perfect little face while I stroke his soft cheek and grit my teeth, because the cuteness is just too much to take in. ( I do that with all my babies, my cheeks are always sore when I have newborns!) I wish that I could dress him up in cute little outfits and take his picture. I wish we had to lug around a bulky car seat and heavy diaper bag as we run our errands and show off our new little baby. I wish I could watch his brothers and sisters fight over who gets to hold him next. I wish, I wish, I wish....
There are times that I need to just cry and "get it out", but it is always short-lived. I feel like God reels me back in. He gently reminds me that I need to dwell on what I DO have, not what I DON'T have. I have a sweet baby in Heaven that waits for me. He is perfectly healthy and in no pain. He was able to escape every evil part of this world. I was blessed with him in the womb for 39 weeks and in our presence for 4 wonderful hours. I have gobs of pictures that help capture those memories forever! I also have a whole bunch of friends and family that took part in that day, whether it was in person or via Facebook, and they can help me relive those moments of love and celebration. I have several letters and messages from friends (and strangers) telling me how God has changed their life, through our precious little boy.
Even amidst the tears, God is still granting me peace. I am so glad that God's peace is different than the world's peace. The world's peace is based on feelings and circumstances. If all is good in life, then there's "peace", but what happens to that peace when conflict arises? What happens when God's plan isn't the same as our plan? The world's peace easily drifts away, leaving us stressed and worried. Only God can give true peace in the middle of our trials. True peace comes from knowing that God is in control and submitting to His will for your life. For me, it's my prayer EVERY day... "Lord, help me remember that YOU are in control. Please make your will known to me and help me be submissive to it."
Philippians 4:6,7 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
John 14:27 Peace I leave with you, my peace I give you. I do not give to you as the world gives. Do not let your heart be troubled and do not be afraid.
I am thankful that these past few weeks have held so many more smiles than I could've ever imagined. We have spent time together as a family, laughing and enjoying being together. The kids love to reflect back on Kai's birthday. They often want to talk about certain things we love about Kai. Just tonight, Nevin said, "I love how Kai's head was so little and round, just like it could fit perfectly in my hand". We've talked about so many things, like his perfect little body, his long typical Harris feet, his frail long fingers and his perfect lips that looked as if they were "drawn on". I am so glad that God granted us enough time to make these memories of him.
Thank you so much for keeping us in your prayers. I know I say it all the time, but we feel so blessed and loved by all of our friends and family!
Psalm 55:22 Cast your cares on the Lord and He will sustain you; He will never let the righteous be shaken.
It's funny how our feelings can be so unpredictable at times. Most of the time, I can't help but smile when I think of beautiful little Kai, which is so very often. I am so grateful for the many prayers that were answered and I feel like I am truly ok with the outcome of our journey, because of course, it was God's perfect plan. But then there are times that I just wanna cry. I want to just sit (and pout) and wish I could cuddle my baby boy up on my chest. I wish he would wake me up in the middle of the night to feed him. I wish I could stare at his perfect little face while I stroke his soft cheek and grit my teeth, because the cuteness is just too much to take in. ( I do that with all my babies, my cheeks are always sore when I have newborns!) I wish that I could dress him up in cute little outfits and take his picture. I wish we had to lug around a bulky car seat and heavy diaper bag as we run our errands and show off our new little baby. I wish I could watch his brothers and sisters fight over who gets to hold him next. I wish, I wish, I wish....
There are times that I need to just cry and "get it out", but it is always short-lived. I feel like God reels me back in. He gently reminds me that I need to dwell on what I DO have, not what I DON'T have. I have a sweet baby in Heaven that waits for me. He is perfectly healthy and in no pain. He was able to escape every evil part of this world. I was blessed with him in the womb for 39 weeks and in our presence for 4 wonderful hours. I have gobs of pictures that help capture those memories forever! I also have a whole bunch of friends and family that took part in that day, whether it was in person or via Facebook, and they can help me relive those moments of love and celebration. I have several letters and messages from friends (and strangers) telling me how God has changed their life, through our precious little boy.
Even amidst the tears, God is still granting me peace. I am so glad that God's peace is different than the world's peace. The world's peace is based on feelings and circumstances. If all is good in life, then there's "peace", but what happens to that peace when conflict arises? What happens when God's plan isn't the same as our plan? The world's peace easily drifts away, leaving us stressed and worried. Only God can give true peace in the middle of our trials. True peace comes from knowing that God is in control and submitting to His will for your life. For me, it's my prayer EVERY day... "Lord, help me remember that YOU are in control. Please make your will known to me and help me be submissive to it."
Philippians 4:6,7 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
John 14:27 Peace I leave with you, my peace I give you. I do not give to you as the world gives. Do not let your heart be troubled and do not be afraid.
I am thankful that these past few weeks have held so many more smiles than I could've ever imagined. We have spent time together as a family, laughing and enjoying being together. The kids love to reflect back on Kai's birthday. They often want to talk about certain things we love about Kai. Just tonight, Nevin said, "I love how Kai's head was so little and round, just like it could fit perfectly in my hand". We've talked about so many things, like his perfect little body, his long typical Harris feet, his frail long fingers and his perfect lips that looked as if they were "drawn on". I am so glad that God granted us enough time to make these memories of him.
Thank you so much for keeping us in your prayers. I know I say it all the time, but we feel so blessed and loved by all of our friends and family!
Tuesday, February 12, 2013
Knowing God...
We have been busy getting back to our family routine and just lovin' on each other as we begin our journey to healing. It's definitely not going to be fast or easy, but I know what God wants for us and it's NOT for us to sit around being sad and depressed. Thank you God for promising a plan of hope!
Jeremiah 29:11 says "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."
All of our friends, family, and even some complete strangers have been such an important part of this journey and I want you to know how much you have meant to us! God has filled my heart with more love in the past 6 months than I would have ever thought possible! The love that has been shown to us from all of you has been an amazing support! I don't know if we could have gone through this with such positivity if it wasn't for you, your constant prayers, and messages of encouragement!
One thing (the most important thing!) that I want our friends and family to know for sure is that you KNOW God the way that we do! If you have not excepted Christ as your Savior, it is so important that you do so! God tells us that we are all born sinners (Romans 3:23) and because of that sin, we are destined to an eternity in Hell (Romans 6:23a). But He also tells us that because He loves us, He sent his son to die on the cross to take away our sin (Romans 5:8)! If we confess our sin and accept Him as our Savior, we will live eternally with God in Heaven one day (Romans 9: 9,10)!!! It's easy and free, but we must RECEIVE God's gift of eternal life (Romans 6:23b)! We must put ALL of our faith in Christ dying on the cross and His resurrection, and that my friend, promises us an eternity with God! ETERNITY!!!
I think of how short Kai's little life was and also think of how short our life on this earth really is when we compare it to eternity! In James, we learn that our life is "like a vapor that appears for a short time and then vanishes". I hope that all of our friends and family know where they will spend eternity because we never know when our last day on this earth will be! Please feel free to message me if you ever have any questions about your salvation. I would be more than happy to talk with you!
For those of you that are Christians, I want to encourage you to pursue your personal relationship with God if you are not already. It can make an AMAZING difference in your life! I have been a Christian for almost 30 years and it wasn't until the last few years that I really got my personal relationship with God on track! I've sat through umpteen church services and many bible classes where I learned so much about the bible, but that information rarely prompted BIG changes in my life. Don't get me wrong, it was beneficial and I am sure it kept me on the right path, but it wasn't until I made my personal relationship with God a priority, that He has changed me from the inside out! Now that my personal relationship with God is going where it needs to be, my heart is open to so much more when I am sitting in those church services or listening to gospel messages on the radio! I feel like I am constantly learning and growing! It's so exciting!
The biggest difference for me, was when I started taking time early in the morning (before the kids get up - which was HARD for me because I am NOT a morning person!) and truly listening to God and getting to know Him. Just me, my bible, my coffee and God. I swear I can feel His presence right there in the room with me. I pray first, thanking God for who He is and asking Him to show me exactly what I need for that day. Then I read a chapter of the bible and finish by praying and bringing requests to God.
Believe me, it's not always easy and I have a lot of spiritual growing left to do! Some days I have to practically drag myself to the table to open my bible and other days, I sit for hours reading God's word and praying. But no matter what my attitude is in the beginning, I always walk away feeling totally blessed and ready to take on the day.
I am definitely not wanting to come off like I am perfect or like I've got it all figured out. I am simply encouraging you to take that same step that I did towards improving your relationship with God. I know if I didn't take that first step, I never would've been prepared for what God had in store for us! God is so much wiser than I am and it's His power and grace that enables us to keep on moving forward! I am thankful that He doesn't give up on me, even when I have been stubborn and hard-headed! God is good like that!
Anyways, I have so much on my mind and in my heart that I want to share on this blog! I have started a long list of blog posts that I want to write, everything from details of sweet baby Kai's birthday to lessons that God has taught me through Kai. I technically don't even "like" writing, but it provides such a wonderful outlet of healing for me, so God has pointed me in this direction for right now.
Please continue to praise God with us for all the prayers He has answered in the past weeks. Also, please continue to pray for our family and the healing that is taking place. Some moments are harder than others, but God continues to comfort and surround us with His never-ending love!
Wednesday, February 6, 2013
Sweet Memories Captured...
A sweet, dear friend of mine made this video that captures Kai's life and the love that we shared with him. It is such a priceless gift and a blessing that will last a lifetime! Thanks Michelle!
Tuesday, February 5, 2013
Perfect Gift from Above...
Our sweet beautiful baby boy,
Kai Jeremiah Harris
3 pounds, 10 ounces
16 inches long
born on January 31, 2013
at 1:59 pm and taken to his home in eternity at 6:32 pm.
Thank you God for this tiny miracle that changed our lives!
Jeremiah 1:5 - "Before I formed you in the womb, I knew you. Before you were born, I set you apart..."
Wednesday, January 30, 2013
A Letter from Mommy...
Dear sweet baby Kai,
We are now counting down the hours until we get to meet you! So many mixed emotions run through us. Feelings of excitement and anticipation, but also feelings of cautiousness and sadness. Some days I just wish I could keep you safe inside me forever, and other days I feel like I can't wait a minute longer to meet you, our amazing little boy.
As the time comes closer that we will get to welcome you to this world, I can't help but feel so much different than how I felt with your brothers and sisters. Before, I felt like I was going to get to meet a little bundle that would change our lives from that point on. Now, I feel like we finally get to meet the little bundle that has already changed our lives in so many ways.
You've taught us how to give everything, and I mean EVERYTHING over to God and to surrender to His will, not our own selfish wants.
You've also taught us that it's ok if we aren't always in control. We must depend on God to get us through the trial that He put us in. If we deny to ask Him for the strength to get us through, we are giving up the grace that He WANTS to give us, and we are depending on our own flesh to sustain us. I used to think that "I" was strong enough to get through anything, but I have come to realize how truly weak I am without God's presence and power. Never once, have I felt alone on this journey with you, Kai. Your daddy and our family and friends have continuously been an amazing support and encouragement to me! Most of all, God has been right there with all of us the whole time.
You have taught us what true faith is. Faith is believing that God is who He says He is and believing He will do what He says He will! We thank God for the promises that He gives us in his word... oh, how we have clung to those many promises! Promises that He will heal your body, promises that we will have eternity with you, promises that He wants what is best for us, even when we can't understand no matter how hard we try.
Thank you for these lessons and many more Kai. I have a journal that I started at the beginning of your life, and in this journal I have listed the many, many things that God has taught me through you. I will treasure that journal and the verses in God's word that have brought us through this pregnancy. My relationship with God will never be the same and I have you, Kai, to thank for that.
Tomorrow will be a day like no other. I hope we have some time with you, even if it's just minutes or hours, to get to know you better, but in some ways, I feel like I feel like we know you already.
I know that you are a mover and a shaker! They said we probably wouldn't feel you move much, since you were unhealthy and I had too much fluid. Oh, how I am glad they were wrong! We have felt you kick all over. All of your brothers and sisters love to feel you kick and as soon as they know you are being active, they would try their hardest to feel for themselves. It is so cute to see the smiles on their faces as they feel you move around. They love you so much!
Another thing I know about you is that you are a night owl! Many times, when I would wake in the middle of the night to go to the bathroom, you would be doing your own little jig, moving all around! This would usually happen at least 2 or 3 times a night, and I enjoyed laying in the quiet darkness, feeling you squirm as I drifted off to sleep again.
I know that you're not a fan of the hiccups! It was a long time before you got the hiccups, but in the last couple weeks, you've had them several times. I love that feeling, but sometimes it seems to irritate you as you try to settle yourself and get comfortable.
I know you've got a stubborn streak! Sometimes in the last few weeks, when the sonographer would try to do your biophysical profile, you would be sound asleep. After much shaking and prodding, you would start practicing your breathing, so we knew you were "awake", but you still would not budge. They would need to count your movements, in order to give you a good score, but your stubborn side seemed to kick in. No matter how much she would "shake" my belly, you would not move, just lay there looking peaceful, totally ignoring all of our attempts.
I often wonder if it's that stubbornness that has kept you thriving all this time. I read early on that most Trisomy 18 babies aren't strong enough to even endure life in the womb and that only about 5% make it through to a full-term pregnancy. We knew that our days with you could be numbered and that at anytime, God could take you to be with Him. Sonogram after sonogram, they monitored you and your heart, and you continued to be strong and hang in there. Here we are at almost 39 weeks, and we are praising God for having all this time with you... 244 days and counting....
God only knows how this story goes from here. We have tried to plan and prepare for you, but the only way we can truly prepare, is to prepare our hearts and let God's plan take course.
Though this journey has been heart-breaking at times, I wouldn't change any of it for the world. I love you and who you are with every fiber of my being.
Looking forward to our time on earth and our eternity together...
Love,
Mommy
We are now counting down the hours until we get to meet you! So many mixed emotions run through us. Feelings of excitement and anticipation, but also feelings of cautiousness and sadness. Some days I just wish I could keep you safe inside me forever, and other days I feel like I can't wait a minute longer to meet you, our amazing little boy.
As the time comes closer that we will get to welcome you to this world, I can't help but feel so much different than how I felt with your brothers and sisters. Before, I felt like I was going to get to meet a little bundle that would change our lives from that point on. Now, I feel like we finally get to meet the little bundle that has already changed our lives in so many ways.
You've taught us how to give everything, and I mean EVERYTHING over to God and to surrender to His will, not our own selfish wants.
You've also taught us that it's ok if we aren't always in control. We must depend on God to get us through the trial that He put us in. If we deny to ask Him for the strength to get us through, we are giving up the grace that He WANTS to give us, and we are depending on our own flesh to sustain us. I used to think that "I" was strong enough to get through anything, but I have come to realize how truly weak I am without God's presence and power. Never once, have I felt alone on this journey with you, Kai. Your daddy and our family and friends have continuously been an amazing support and encouragement to me! Most of all, God has been right there with all of us the whole time.
You have taught us what true faith is. Faith is believing that God is who He says He is and believing He will do what He says He will! We thank God for the promises that He gives us in his word... oh, how we have clung to those many promises! Promises that He will heal your body, promises that we will have eternity with you, promises that He wants what is best for us, even when we can't understand no matter how hard we try.
Thank you for these lessons and many more Kai. I have a journal that I started at the beginning of your life, and in this journal I have listed the many, many things that God has taught me through you. I will treasure that journal and the verses in God's word that have brought us through this pregnancy. My relationship with God will never be the same and I have you, Kai, to thank for that.
Tomorrow will be a day like no other. I hope we have some time with you, even if it's just minutes or hours, to get to know you better, but in some ways, I feel like I feel like we know you already.
I know that you are a mover and a shaker! They said we probably wouldn't feel you move much, since you were unhealthy and I had too much fluid. Oh, how I am glad they were wrong! We have felt you kick all over. All of your brothers and sisters love to feel you kick and as soon as they know you are being active, they would try their hardest to feel for themselves. It is so cute to see the smiles on their faces as they feel you move around. They love you so much!
Another thing I know about you is that you are a night owl! Many times, when I would wake in the middle of the night to go to the bathroom, you would be doing your own little jig, moving all around! This would usually happen at least 2 or 3 times a night, and I enjoyed laying in the quiet darkness, feeling you squirm as I drifted off to sleep again.
I know that you're not a fan of the hiccups! It was a long time before you got the hiccups, but in the last couple weeks, you've had them several times. I love that feeling, but sometimes it seems to irritate you as you try to settle yourself and get comfortable.
I know you've got a stubborn streak! Sometimes in the last few weeks, when the sonographer would try to do your biophysical profile, you would be sound asleep. After much shaking and prodding, you would start practicing your breathing, so we knew you were "awake", but you still would not budge. They would need to count your movements, in order to give you a good score, but your stubborn side seemed to kick in. No matter how much she would "shake" my belly, you would not move, just lay there looking peaceful, totally ignoring all of our attempts.
I often wonder if it's that stubbornness that has kept you thriving all this time. I read early on that most Trisomy 18 babies aren't strong enough to even endure life in the womb and that only about 5% make it through to a full-term pregnancy. We knew that our days with you could be numbered and that at anytime, God could take you to be with Him. Sonogram after sonogram, they monitored you and your heart, and you continued to be strong and hang in there. Here we are at almost 39 weeks, and we are praising God for having all this time with you... 244 days and counting....
God only knows how this story goes from here. We have tried to plan and prepare for you, but the only way we can truly prepare, is to prepare our hearts and let God's plan take course.
Though this journey has been heart-breaking at times, I wouldn't change any of it for the world. I love you and who you are with every fiber of my being.
Looking forward to our time on earth and our eternity together...
Love,
Mommy
Monday, January 28, 2013
Keeping up on Kai...
For those that don't know, our c-section day will be on Thursday, January 31st, unless Kai has plans on coming sooner. =) We are blessed to have LOTS of family and close friends that are going to be there with us to welcome Kai into the world.
We have made a Facebook group for those who want to keep updated that day. We know that there are people far and wide that are praying for us and our sweet baby boy and we would love to keep you "in the know" on what is going on and how to pray for us.
Would you be willing to commit to praying for baby Kai and our family? Would you like to keep updated? If so, please join our Facebook group, "Kai's Crew". Everyone is welcome to join, you don't have to be "friends" of ours on Facebook. We would love to bring our brothers and sisters in Christ together before His throne as we prepare for this day and the days to come.
If you have any problems with the link or being able to join the group, please e-mail me at Kacerchaser@gmail.com.
On the day of Kai's arrival, one of my very best friends, Shanda, has graciously volunteered to update the group as the day unfolds.
Thanks again for your prayers and support!
Matthew 18;20 For where two or three are gathered together in my name, there am I in the midst of them.
We have made a Facebook group for those who want to keep updated that day. We know that there are people far and wide that are praying for us and our sweet baby boy and we would love to keep you "in the know" on what is going on and how to pray for us.
Would you be willing to commit to praying for baby Kai and our family? Would you like to keep updated? If so, please join our Facebook group, "Kai's Crew". Everyone is welcome to join, you don't have to be "friends" of ours on Facebook. We would love to bring our brothers and sisters in Christ together before His throne as we prepare for this day and the days to come.
If you have any problems with the link or being able to join the group, please e-mail me at Kacerchaser@gmail.com.
On the day of Kai's arrival, one of my very best friends, Shanda, has graciously volunteered to update the group as the day unfolds.
Thanks again for your prayers and support!
Matthew 18;20 For where two or three are gathered together in my name, there am I in the midst of them.
Sunday, January 27, 2013
Counting down....
This pregnancy has been a journey like no other. In the beginning, I
often wondered if the sad times would take over and put a dark shadow on
our lives. They haven't! Our God and Savior has sustained us the
entire time. I am definitely not saying there have been no tears, but there have
been so many more good days than hard days. We've made good memories with our Kai the best way we know how and I hope we can cherish these memories forever. Each family member has different ways of dealing with this trial, but we've learned to lean on each other and support each other. We've seen our kids' relationships grow stronger and watched them encourage each other. What a blessing!
I wanted to jot a few memories down, so that we don't forget them...
Nolan and Nevin (6 years old) are so young, it's hard for them to even wrap their little minds around this. They pray for Kai at dinner time and often ask "silly" questions about him. The innocence of their youth is so sweet. A couple of times in the past few months, spunky little Nevin would blurt out, "I can't wait to die!". To which I would respond "Nevin! Don't ever say that!" and he would tell me "I am just saying, heaven is going to be awesome, with streets of gold and mansions, and plus I would get to be with Kai sooner!" Needless to say, we've had some conversations about God's purpose for us here on this earth and that heaven will always be there for us and never fade.
Tucker, who is even younger, just 2 1/2 years old, has his own love for his baby brother as well. We go through the same conversation every night when we sit down to rock at bedtime. Tucker snuggles all in around my very round, protruding belly... he seems to fit just perfectly. His hand wonders down to my belly and he sets it right on top and the same words are said every night...
TUCKER: (in his sweet little voice) "This is baby Kai?"
ME: "Yep, that's baby Kai."
TUCKER: (lifts his head up with his big eyes looking right into mine, raises his eye brows, and then pushes his hand a little harder on my belly) "I 'quish' baby Kai???"
ME: "Noooo, don't squish him, you should be soft and show him love."
TUCKER: "Ok mom" (then he starts to rub my belly very softly, sometimes till he falls asleep)
Bryson, our sweet sensitive 8 year old, has loved to have his hand on my belly, every chance he gets. Many times, he would come and talk to me about his day and his hand would gently rub over my belly the whole time we would be talking. I think some of the time, it was done subconsciously, but out of pure love for that little life growing inside me.
The girls (12 years old) struggled with telling their friends about Kai's situation, but they wanted him to have his place in their life. They are proud that he is their brother and didn't want to keep him a secret, so as hard as it was, they told their friends that he would probably only be with us a short time. They took Kai's sonogram pictures and hung them in their locker, so that they could remember how special he is to them and show him off throughout their school day. Also, at night, when they would head up to bed, they would usually ask, "Is Kai wiggling or is he sleeping?" They would give him a little pat and tell him "Good night little Kai!".
Ashton (14 years old) has been the quietest of the kids when we talk about Kai... actually he's probably the quietest of all the kids period! =) He has always been a deep thinker and would ask questions about Kai as they came to him. He continued to remain strong and only say positive things, knowing that the kids all look up to him as the older brother. He told us at one point, that he feels like Kai will always be with him throughout his whole life even though he won't be on this earth. I think he's right. =)
We've been able to do so much throughout the pregnancy. I have felt great the entire time! We have had some fun family time.... of course, the highlight was our trip to the beach, which "kicked off" this pregnancy! We also did a couple Brown County trips, a Holiday World adventure, a few spontaneous day trips to Indy, and even a 3 day trip to an indoor water park right before Christmas! (Of course, Kai and I spent most of our time in the lazy river, which was fine with me!) =)
On a side note... I don't know what I would've done without Dave, he is my rock. He has been there for me over the last 15 years and this pregnancy has been no different. Our relationship is so uniquely solid, thank God! I have always felt like we have something that most of this world could never even understand. He is my absolute best friend and I couldn't love him any more than I do. Just when I thought our relationship could never be any stronger, God put us "here". We have grown even closer and our bond is tighter than ever. We have cried together, encouraged each other, and praised God together. I would have never chosen this recent path that God put us on, but I am convinced that I couldn't have walked it without Dave. God knew that almost 16 years ago when He brought Dave into my life!
There are so many emotions going through us this week. We are approaching the day with a positive attitude, but there are times that it's just too much for our human minds to bear. Times that we have to break down and have a good cry and bring ourselves back to the point where we can thank God for this. I am thankful for God's word and my personal time with God daily. It always seems to encourage me and get me back on track and thinking about things eternally.
Please pray for us this week. I know that so many are praying, and not just because you tell us, but because we are reaping all the benefits from your prayers. I cherish the sweet comments and messages that you have sent to us. So many times, if I am feeling down, I go back and read over them. I plan on printing them out and keeping them as keepsakes. It's amazing the support that we've had from friends, families, and even some perfect strangers! God has put you in our path for a reason and we thank Him for that as well.
I wanted to jot a few memories down, so that we don't forget them...
Nolan and Nevin (6 years old) are so young, it's hard for them to even wrap their little minds around this. They pray for Kai at dinner time and often ask "silly" questions about him. The innocence of their youth is so sweet. A couple of times in the past few months, spunky little Nevin would blurt out, "I can't wait to die!". To which I would respond "Nevin! Don't ever say that!" and he would tell me "I am just saying, heaven is going to be awesome, with streets of gold and mansions, and plus I would get to be with Kai sooner!" Needless to say, we've had some conversations about God's purpose for us here on this earth and that heaven will always be there for us and never fade.
Tucker, who is even younger, just 2 1/2 years old, has his own love for his baby brother as well. We go through the same conversation every night when we sit down to rock at bedtime. Tucker snuggles all in around my very round, protruding belly... he seems to fit just perfectly. His hand wonders down to my belly and he sets it right on top and the same words are said every night...
TUCKER: (in his sweet little voice) "This is baby Kai?"
ME: "Yep, that's baby Kai."
TUCKER: (lifts his head up with his big eyes looking right into mine, raises his eye brows, and then pushes his hand a little harder on my belly) "I 'quish' baby Kai???"
ME: "Noooo, don't squish him, you should be soft and show him love."
TUCKER: "Ok mom" (then he starts to rub my belly very softly, sometimes till he falls asleep)
Bryson, our sweet sensitive 8 year old, has loved to have his hand on my belly, every chance he gets. Many times, he would come and talk to me about his day and his hand would gently rub over my belly the whole time we would be talking. I think some of the time, it was done subconsciously, but out of pure love for that little life growing inside me.
The girls (12 years old) struggled with telling their friends about Kai's situation, but they wanted him to have his place in their life. They are proud that he is their brother and didn't want to keep him a secret, so as hard as it was, they told their friends that he would probably only be with us a short time. They took Kai's sonogram pictures and hung them in their locker, so that they could remember how special he is to them and show him off throughout their school day. Also, at night, when they would head up to bed, they would usually ask, "Is Kai wiggling or is he sleeping?" They would give him a little pat and tell him "Good night little Kai!".
Ashton (14 years old) has been the quietest of the kids when we talk about Kai... actually he's probably the quietest of all the kids period! =) He has always been a deep thinker and would ask questions about Kai as they came to him. He continued to remain strong and only say positive things, knowing that the kids all look up to him as the older brother. He told us at one point, that he feels like Kai will always be with him throughout his whole life even though he won't be on this earth. I think he's right. =)
We've been able to do so much throughout the pregnancy. I have felt great the entire time! We have had some fun family time.... of course, the highlight was our trip to the beach, which "kicked off" this pregnancy! We also did a couple Brown County trips, a Holiday World adventure, a few spontaneous day trips to Indy, and even a 3 day trip to an indoor water park right before Christmas! (Of course, Kai and I spent most of our time in the lazy river, which was fine with me!) =)
On a side note... I don't know what I would've done without Dave, he is my rock. He has been there for me over the last 15 years and this pregnancy has been no different. Our relationship is so uniquely solid, thank God! I have always felt like we have something that most of this world could never even understand. He is my absolute best friend and I couldn't love him any more than I do. Just when I thought our relationship could never be any stronger, God put us "here". We have grown even closer and our bond is tighter than ever. We have cried together, encouraged each other, and praised God together. I would have never chosen this recent path that God put us on, but I am convinced that I couldn't have walked it without Dave. God knew that almost 16 years ago when He brought Dave into my life!
There are so many emotions going through us this week. We are approaching the day with a positive attitude, but there are times that it's just too much for our human minds to bear. Times that we have to break down and have a good cry and bring ourselves back to the point where we can thank God for this. I am thankful for God's word and my personal time with God daily. It always seems to encourage me and get me back on track and thinking about things eternally.
Please pray for us this week. I know that so many are praying, and not just because you tell us, but because we are reaping all the benefits from your prayers. I cherish the sweet comments and messages that you have sent to us. So many times, if I am feeling down, I go back and read over them. I plan on printing them out and keeping them as keepsakes. It's amazing the support that we've had from friends, families, and even some perfect strangers! God has put you in our path for a reason and we thank Him for that as well.
Friday, January 11, 2013
Our Unofficial Official Plan...
Here's our plan, which we've learned by now, could change at anytime!
*After talking with the Peoria doctors and our Champaign doctors (and God!), we've decided to deliver in Champaign.
*Kai's delivery date (as long as he's patient enough) will be January 31st. =)
*We will be having a c-section. Our doctor ultimately left the decision in our hands, but recommended c-section as the safest way to deliver Kai without putting too much stress on his heart.
*We plan to have all of our family, including our kids, at the hospital when it's time to deliver. We want our family to meet Kai and be able to enjoy what time we do have with him. Our doctor is working out plans with the neonatologist and the nursing staff so that everyone can be with him as soon as possible.
*Once delivered, Kai will be stabilized (hopefully), and taken immediately to the NICU for an evaluation and an echo cardiogram. By the time I am in recovery, we should be able to hold Kai and spend time with him.
*If the echo cardiogram would show us any signs of hope for successful surgery, we would be transferred to Peoria within the first few days of Kai's life.
*We have so many generous friends and family that have offered to help in so many different ways! Some are making personalized keepsakes for Kai, some dear friends that are professional photographers are going to be there at his birth to take pictures of our family with him, and some have offered to help with the kids before, during, and after his birth. I know it's hard to make exact plans (especially as far as the kids go), but it is so comforting to know that we have so much love and support. We appreciate them offering help with such generosity. It truly does make this situation easier. God has put some amazing people with us on this journey!
__________________________________________________________________________
So, on a side note, we had a really sweet sonographer in Peoria. At the end of the sonogram, she pulled out the 3D sono machine and offered to try to get some pictures of Kai. We really had no idea what to expect, some trisomy babies can be severely deformed, albeit absolutely beautiful. Mr. Kai was so shy at first, with his little hands up over his face, so we checked out his tiny little body. We loved seeing his long legs and precious little feet. Dave and I sat there with tears in our eyes, just totally amazed... this was our first 3D sono and it was just a perfect experience. He would move his little arms and hands around, but kept them up over his face most of the time. The sonographer was so patient, thank goodness! His little hands were so adorable, with his little overlapped fingers, a common trait among trisomy babies that I think is absolutely adorable! Finally for a brief second, he moved his hands long enough to get a picture of part of his face. Awww... we just felt like we could burst with love for this little boy! We have disc full of pictures, but she did print out a couple of his little face that we would love to share with you. The quality isn't the best because our scanner isn't working, so I had to just take a picture...
Lamentations 3:22 - 25
It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is they faithfulness. The Lord is my portion, saith my soul: therefore will I hope in him. The Lord is good unto them that wait for him, to the soul that seeketh him.
*After talking with the Peoria doctors and our Champaign doctors (and God!), we've decided to deliver in Champaign.
*Kai's delivery date (as long as he's patient enough) will be January 31st. =)
*We will be having a c-section. Our doctor ultimately left the decision in our hands, but recommended c-section as the safest way to deliver Kai without putting too much stress on his heart.
*We plan to have all of our family, including our kids, at the hospital when it's time to deliver. We want our family to meet Kai and be able to enjoy what time we do have with him. Our doctor is working out plans with the neonatologist and the nursing staff so that everyone can be with him as soon as possible.
*Once delivered, Kai will be stabilized (hopefully), and taken immediately to the NICU for an evaluation and an echo cardiogram. By the time I am in recovery, we should be able to hold Kai and spend time with him.
*If the echo cardiogram would show us any signs of hope for successful surgery, we would be transferred to Peoria within the first few days of Kai's life.
*We have so many generous friends and family that have offered to help in so many different ways! Some are making personalized keepsakes for Kai, some dear friends that are professional photographers are going to be there at his birth to take pictures of our family with him, and some have offered to help with the kids before, during, and after his birth. I know it's hard to make exact plans (especially as far as the kids go), but it is so comforting to know that we have so much love and support. We appreciate them offering help with such generosity. It truly does make this situation easier. God has put some amazing people with us on this journey!
__________________________________________________________________________
So, on a side note, we had a really sweet sonographer in Peoria. At the end of the sonogram, she pulled out the 3D sono machine and offered to try to get some pictures of Kai. We really had no idea what to expect, some trisomy babies can be severely deformed, albeit absolutely beautiful. Mr. Kai was so shy at first, with his little hands up over his face, so we checked out his tiny little body. We loved seeing his long legs and precious little feet. Dave and I sat there with tears in our eyes, just totally amazed... this was our first 3D sono and it was just a perfect experience. He would move his little arms and hands around, but kept them up over his face most of the time. The sonographer was so patient, thank goodness! His little hands were so adorable, with his little overlapped fingers, a common trait among trisomy babies that I think is absolutely adorable! Finally for a brief second, he moved his hands long enough to get a picture of part of his face. Awww... we just felt like we could burst with love for this little boy! We have disc full of pictures, but she did print out a couple of his little face that we would love to share with you. The quality isn't the best because our scanner isn't working, so I had to just take a picture...
Lamentations 3:22 - 25
It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is they faithfulness. The Lord is my portion, saith my soul: therefore will I hope in him. The Lord is good unto them that wait for him, to the soul that seeketh him.
Wednesday, January 9, 2013
Heavy hearts, but still praising God! Update on Peoria appointments....
Most of you know that our big day in Peoria was on Monday. We had several appointments that lasted all day, including an echo for Kai, meeting with maternal fetal meds and the doctors that would be delivering Kai, touring the hospital and the NICU, and meeting with the neonatologist.
Honestly, I was excited to go and spend the day with Dave and make plans for our little Kai entering the world! But what started out as a fun day ended in an emotionally draining day.
Our first appointment was the detailed echo of Kai's heart. After a LONG echo was performed by both the cardiologist and the sonographer, he had to break some pretty devastating news to us. Kai's very complex heart problem is worse and more urgent than we thought. The doctor sat down with us, with tears in his eyes and very shaky hands, and told us that it doesn't look like Kai will be able to survive longer than 12-48 hours after his birth, due to his heart problems alone. Needless to say, our hearts just broke.
The problem remains that his aortic valve has several defects. Without going into too much detail, Kai has 2 issues w/ his aortic valve, called critical aortic stenosis and aortic regurgitation. The aortic valve is completely responsible for the blood flow out of the heart and into the rest of the body. His valve doesn't open properly and can not carry out that very important function. The other problem (aortic regurgitation) is that the valve is incompetent and the blood flows in the wrong direction, back to his heart.
While we are still trying to make sure we are well-informed on our options, it currently looks like surgery is not an ideal option. If open heart surgery can be done, it would need to be done within the first few days of his life. This specific surgery doesn't have a high-success rate in a healthy newborn, let alone a baby with health complications.
I will say that I am so thankful that most of our doctors, including our pediatric cardiologists, have been wonderful! Most of you may not know, but Trisomy 18 is a very controversial disorder. Some doctors think that these babies should be left to die and obviously as I said before, termination is encouraged. A lot of mothers have to fight for appropriate care during their pregnancy and then also fight for care of their newborn as well. I have read many stories from T18 mamas about their doctors being very cold, negative, pushy, and also giving them false information to try to suede them in a certain direction. Our doctors have been amazing and have gone above and beyond to provide us with the best care.
After getting today's diagnosis, unfortunately, our doctor seemed to have very little hope, but tried to still remain positive and encouraging. After getting home and researching what he has told us (concerning Kai's diagnosis and the possible surgery), he was exactly correct. It's devastating to get this news, but it's comforting to know that we, including Kai, are getting the best possible care. I can't even imagine the stress of having to fight for care, while learning all of these things about our unborn child.
Please pray for us as we have to make some hard decisions. We need God to guide us and give us wisdom. We still have no doubt that God has a purpose and plan for Kai. We continue to pray that in the end, no matter what the outcome, God will receive all the glory!
Please also pray that we will be accepting of God's plan for him. This is SOOOO not what we want for Kai, but it is obviously what is best for him and our family. Even though this has been heart-wrenching at times, it is amazing that God has given us such an amazing peace. A peace that I never would have thought possible in the middle of such a hard trial.
Please pray for our kids. Some of them are more emotional than others and it's so hard for them to understand. Shoot, it's hard for an adult to understand, let alone a child! It just breaks my heart to hear them ask if just maybe the doctors could be wrong and maybe Kai will get to come home with us.
Please praise God with us! We are so thankful for the time that God has given us with Kai so far! When we first found out about his diagnosis, we knew his chances of surviving this pregnancy were very slim. God has given us 223 days with him since we found out he was with us! He has been loved and enjoyed for every single one of those days!
God has continued to teach us SO much through this journey. I have grown spiritually in leaps and bounds in these last few months! He truly knows what is needed in our life and my faith in our omniscient God has taken on a whole new meaning!
We will be meeting with our regular OB/GYN, Dr. Shepherd, and revising our plan tomorrow. I will be sure to share the details with you all soon!
Thank you so much for all the texts and FB messages that you sent, letting us know that you are praying for us! We appreciate your love and support! =)
Honestly, I was excited to go and spend the day with Dave and make plans for our little Kai entering the world! But what started out as a fun day ended in an emotionally draining day.
Our first appointment was the detailed echo of Kai's heart. After a LONG echo was performed by both the cardiologist and the sonographer, he had to break some pretty devastating news to us. Kai's very complex heart problem is worse and more urgent than we thought. The doctor sat down with us, with tears in his eyes and very shaky hands, and told us that it doesn't look like Kai will be able to survive longer than 12-48 hours after his birth, due to his heart problems alone. Needless to say, our hearts just broke.
The problem remains that his aortic valve has several defects. Without going into too much detail, Kai has 2 issues w/ his aortic valve, called critical aortic stenosis and aortic regurgitation. The aortic valve is completely responsible for the blood flow out of the heart and into the rest of the body. His valve doesn't open properly and can not carry out that very important function. The other problem (aortic regurgitation) is that the valve is incompetent and the blood flows in the wrong direction, back to his heart.
While we are still trying to make sure we are well-informed on our options, it currently looks like surgery is not an ideal option. If open heart surgery can be done, it would need to be done within the first few days of his life. This specific surgery doesn't have a high-success rate in a healthy newborn, let alone a baby with health complications.
I will say that I am so thankful that most of our doctors, including our pediatric cardiologists, have been wonderful! Most of you may not know, but Trisomy 18 is a very controversial disorder. Some doctors think that these babies should be left to die and obviously as I said before, termination is encouraged. A lot of mothers have to fight for appropriate care during their pregnancy and then also fight for care of their newborn as well. I have read many stories from T18 mamas about their doctors being very cold, negative, pushy, and also giving them false information to try to suede them in a certain direction. Our doctors have been amazing and have gone above and beyond to provide us with the best care.
After getting today's diagnosis, unfortunately, our doctor seemed to have very little hope, but tried to still remain positive and encouraging. After getting home and researching what he has told us (concerning Kai's diagnosis and the possible surgery), he was exactly correct. It's devastating to get this news, but it's comforting to know that we, including Kai, are getting the best possible care. I can't even imagine the stress of having to fight for care, while learning all of these things about our unborn child.
Please pray for us as we have to make some hard decisions. We need God to guide us and give us wisdom. We still have no doubt that God has a purpose and plan for Kai. We continue to pray that in the end, no matter what the outcome, God will receive all the glory!
Please also pray that we will be accepting of God's plan for him. This is SOOOO not what we want for Kai, but it is obviously what is best for him and our family. Even though this has been heart-wrenching at times, it is amazing that God has given us such an amazing peace. A peace that I never would have thought possible in the middle of such a hard trial.
Please pray for our kids. Some of them are more emotional than others and it's so hard for them to understand. Shoot, it's hard for an adult to understand, let alone a child! It just breaks my heart to hear them ask if just maybe the doctors could be wrong and maybe Kai will get to come home with us.
Please praise God with us! We are so thankful for the time that God has given us with Kai so far! When we first found out about his diagnosis, we knew his chances of surviving this pregnancy were very slim. God has given us 223 days with him since we found out he was with us! He has been loved and enjoyed for every single one of those days!
God has continued to teach us SO much through this journey. I have grown spiritually in leaps and bounds in these last few months! He truly knows what is needed in our life and my faith in our omniscient God has taken on a whole new meaning!
We will be meeting with our regular OB/GYN, Dr. Shepherd, and revising our plan tomorrow. I will be sure to share the details with you all soon!
Thank you so much for all the texts and FB messages that you sent, letting us know that you are praying for us! We appreciate your love and support! =)
Wednesday, January 2, 2013
Happy New Year! Updates on Kai...
There's not been anything major to report in the way of appointments lately. Everything has been going pretty smooth and that is an answer to prayer! We are usually going back and forth to appointments at least once or twice a week. Here's what we do know...
Kai has continued to grow bigger! The last time we had a growth sono, he was about 3 1/2 pounds, which was right on target. I feel like they always tell me that my babies are going to be bigger than what they end up being. They said that Tucker was going to be at least 11 pounds and he was "only" 8 lbs 13 ozs. I think it's their long arms and long legs that throw them off. But at least we know that Kai isn't lagging behind too much!
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| His head/profile are in the upper right corner. It looks like he's sitting in a hammock, legs and feet on the left side. =) |
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| He is looking straight forward, chubby little face in the middle of the picture. |
Kai has done great on his biophysical profiles. We usually go about once a week for these ultrasounds. He has had a good strong heart rate, excellent fetal movement, and has gotten great scores for practicing his breathing! He is still SOOOO active. There was only one sonogram where he was barely moving. It was so cute, in the beginning of the sono he was being very wiggly and within the first few minutes, he put both hands behind his head and went to sleep. The sonographer pushed and prodded him for 15 minutes and he would NOT wake up! Kai just does his own thing, I guess... stubborn like his mama!
Little man has been head-down for the past month or so, but about 3 days ago, I told Dave that I thought he flipped around. I could feel his hard kicks in a totally different area than usual. Sure enough, when we were in for a sono today, she mentioned that he was transverse (sideways). Little stinker! Our doctor said that he could still easily flip back, especially with all the extra fluid... it gives him more room to swim around! Ha!
As far as my fluid, it is still considered very high, but it could be worse! The normal range of fluid is 8 - 20 cm and mine is around 35 - 39 cm most of the time. I am still feeling great though! I imagined I would be totally miserable by now, but thank the Lord, I am still enjoying every bit of this pregnancy. Dave has been off work for a couple weeks, due to a shut-down at his work. I think that has really helped! God blessed me with a wonderful, sweet husband that takes good care of me!
Some plans on labor and delivery...
After talking with our OB/GYN, we have definitely decided to deliver in Peoria. It is a little sad for me. We just love Carle and we love, love, looooooove our OB/GYN, Dr. Shepherd. We feel comfortable with him and he knows me so well. He has been such a wonderful support to us throughout this pregnancy. He has called me at home to check on me and always tells us that he is there for us, even if it's just to talk. We've shared lots of hugs and even some tears over the past few months. He agrees that we need to go to Peoria as well, for Kai's sake. I will continue to see him right up until I deliver. He assured both Dave and I that we will be in excellent hands in Peoria. He had a lot of great things to say about the doctors and the hospital over there.
Dr. Shepherd said that he assumes that they will induce labor at 39 weeks, which would put us having Kai the last week of January! Yikes... only 4 weeks away! It's so scary and exciting at the same time! I feel like we have so much preparing that needs to be done, yet we have no idea really "how" to prepare!
There is a chance that I could go into labor on my own, especially since my fluid is so high. It could "trick" my body into thinking that I am full term. If I do go into labor, I am to immediately get to Carle, where they will evaluate me and put me on a helicopter to Peoria. This will make things so much more complicated, so we are praying that Kai will just hang in there until his appointed birth date gets here!
We aren't sure yet if we will have Kai naturally or if it will be c-section. We are hoping to find out more once we talk to the doctors at Peoria. I have never had a c-section before, so that will be a whole new ballgame for us!
All that being said, we go to Peoria this Monday, January 7th. We have several appointments that day, including an echo appointment for Kai, maternal fetal medicine, and tours of the hospital and NICU.
Please continue to pray for us! We appreciate every prayer and every sweet message that you send to us!
We feel like God has blessed us tremendously on this journey already and we know that He has so much more in store for us! There are going to be sad times for sure and it may not be what we want, but knowing that it's all part of God's perfect plan will be our hope! I am so thankful that God knows what is best for us and we can hand it all over to Him.
Isaiah 55:8,9
For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.
Wednesday, December 5, 2012
Kai's Appointment Update
Thank you so much for all of the prayers! We feel very loved and blessed! We talked to the older kids tonight about what an amazing support system we have! I know that it brought some comfort to them, just knowing how many people told us they were praying and left sweet encouraging "notes". Knowing that so many people are storming the throne on our behalf gives us an amazing peace! God, the creator of the universe, hears each and every little prayer. How awesome is that!??!
Our appointment went very smooth today. We saw Dr. Shah and we really, really liked him! We've heard great things about him from people who have had experience with him personally.
Just so you know, today was ALL focused on Kai's heart. He has many other "issues", but those were not addressed today. We had about an hour and a half of straight sono on his heart... thanks to his wiggly self! He was not behaving and made it a little difficult on the doctors to get the info they needed, but in the end, the doctors felt like they had a good idea on what we are dealing with. Here are the details that we know from the appointment today.
Kai has 2 major issues that the doctors are concerned with. He has a few other small heart defects, that don't seem to effect how his heart functions, so as for now, we are assuming that the smaller defects will not require surgery. This is good news!
One of the issues (the lesser of the two) is a large VSD... which is a large hole in between the bottom two chambers of his heart. This will require surgery, but not immediately. Good news!
The other issue has to do with his aortic valve. Kai's aortic valve is very abnormal and doesn't function properly, which causes the blood to flow in different directions. It is also very narrow and leaky. Kai would more than likely require open-heart surgery, but the good news is, that it shouldn't need to take place immediately after birth! Originally, we were told that he would need to be rushed off to surgery, which for obvious reasons, would be very risky. Even though this defect is very serious, we are thankful that it's not as bad as it originally seemed to be. (I won't go into the details of all that! It's enough to confuse anyone!) With this heart defect, he is at a higher risk for going into heart failure in utero. If he does go into heart failure in utero, sadly, there is nothing that can be done. He is going to be closely monitored and they will be checking up on his heart again in a couple weeks.
Also, after talking with the doctor today, he highly recommended that we deliver in Peoria. He said with Kai's condition, he believes it would be best if the heart team was there at his birth. Baby's can always throw a curve ball, and if he was to need surgery right away, we can't imagine sending him off to Peoria in a helicopter. We would both want to be there with him. This obviously adds some unexpected changes to our plan, but we think it will be best for Kai. We fully intend on having all of the kids there with us and I think with our families being so willing to help, we can come up with a plan! We will be going to the hospital to visit and meet with some of the staff in a couple weeks. Please pray for us as we make these arrangements.
Once again, thanks so much for all of your prayers and concern. We will do our best to keep you updated on a more regular basis! Our next appointment is on the 14th and they will be checking on his growth and my fluid. Please feel free to ask any questions, any time! Love to you all!
Our appointment went very smooth today. We saw Dr. Shah and we really, really liked him! We've heard great things about him from people who have had experience with him personally.
Just so you know, today was ALL focused on Kai's heart. He has many other "issues", but those were not addressed today. We had about an hour and a half of straight sono on his heart... thanks to his wiggly self! He was not behaving and made it a little difficult on the doctors to get the info they needed, but in the end, the doctors felt like they had a good idea on what we are dealing with. Here are the details that we know from the appointment today.
Kai has 2 major issues that the doctors are concerned with. He has a few other small heart defects, that don't seem to effect how his heart functions, so as for now, we are assuming that the smaller defects will not require surgery. This is good news!
One of the issues (the lesser of the two) is a large VSD... which is a large hole in between the bottom two chambers of his heart. This will require surgery, but not immediately. Good news!
The other issue has to do with his aortic valve. Kai's aortic valve is very abnormal and doesn't function properly, which causes the blood to flow in different directions. It is also very narrow and leaky. Kai would more than likely require open-heart surgery, but the good news is, that it shouldn't need to take place immediately after birth! Originally, we were told that he would need to be rushed off to surgery, which for obvious reasons, would be very risky. Even though this defect is very serious, we are thankful that it's not as bad as it originally seemed to be. (I won't go into the details of all that! It's enough to confuse anyone!) With this heart defect, he is at a higher risk for going into heart failure in utero. If he does go into heart failure in utero, sadly, there is nothing that can be done. He is going to be closely monitored and they will be checking up on his heart again in a couple weeks.
Also, after talking with the doctor today, he highly recommended that we deliver in Peoria. He said with Kai's condition, he believes it would be best if the heart team was there at his birth. Baby's can always throw a curve ball, and if he was to need surgery right away, we can't imagine sending him off to Peoria in a helicopter. We would both want to be there with him. This obviously adds some unexpected changes to our plan, but we think it will be best for Kai. We fully intend on having all of the kids there with us and I think with our families being so willing to help, we can come up with a plan! We will be going to the hospital to visit and meet with some of the staff in a couple weeks. Please pray for us as we make these arrangements.
Once again, thanks so much for all of your prayers and concern. We will do our best to keep you updated on a more regular basis! Our next appointment is on the 14th and they will be checking on his growth and my fluid. Please feel free to ask any questions, any time! Love to you all!
Tuesday, December 4, 2012
Update and Prayer Requests...
We've had a couple appointments and I figure I am past due on updating, so here's some things we know.
We had an echocardiogram done on Kai a few weeks ago. It was not a real detailed echo, because I was only about 24 weeks along at the time. The doctor did see some quite complex issues and seemed very concerned. He had a hard time giving us a definite diagnosis because Kai was so wiggly!
On that note, this little boy moves 24-7! I've read that a lot of T18 babies are not very active, but God sure blessed us with a boy that moves and grooves all day (and night) long! I love every second of it! I can tell he's grown in the past couple weeks because the feeling of his movements have changed. =)
At our last couple sonograms, Kai has been growing bigger! Yay! Most T18 babies have very low birth weight, so they have been checking on him regularly and he seems to be keeping up! I am definitely doing my part on feeding him well!
In other news, I have been diagnosed with a condition called polyhydramnios. This basically means that I have too much amniotic fluid. We were told it is caused by 1of 3 things... #1. Kai hasn't properly developed the muscles to "swallow", #2. Kai's brain is not sending him the signal to swallow, or #3. Kai has a blockage in the esophagus area, which is not allowing him to swallow. For those that don't know, the baby usually swallows amniotic fluid on a regular basis and then urinates what is not needed. That process has been interrupted and my body continues to produce the fluid. It shouldn't cause any major issues with the baby, but they do plan on monitoring him (and me) regularly through sonograms and non-stress tests. In the meantime, this mama may be extremely uncomfortable! At my last appointment, I measured full term, even though I had 2 1/2 months left to go! Needless to say, bending over to pick something up is NOT my favorite thing right now! Thank you Lord for a hubby and kiddos that are willing to help... most of the time without even being asked! It's a good thing that I have that God-given talent of picking stuff up with my toes... that has sure been coming in handy lately!
I would like to ask for some specific prayers please!
#1. Our appointment with the pediatric cardiology specialist from Peoria is tomorrow...well, I guess today, Wednesday. Please pray for wisdom as the doctor diagnoses Kai's heart condition. Please pray for us as we are in this appointment. It's always nice to see our sweet boy on that screen, but it's always hard to hear the list of issues that he has. Just pray that Dave and I (and our family) will continue to trust in God's plan, no matter what the outcome.
#2. Please pray for us as we make some very difficult decisions over the next few weeks. Decisions that we never would've dreamed that we would have to make for our unborn child. Please pray that God will give us the wisdom and understanding to make decisions that we are confident with.
#3. Also, please pray for physical strength for me. With all of my pregnancies, I have felt great, right up to the day that I delivered. However, this diagnosis of polyhydramnios is obviously going to be something that will hinder me physically. I am a do-it-yourselfer, and I am not good at asking for help. My husband has been wonderful about making me stop and sit down and take breaks, even when I don't want to! I am so thankful for him! But, unfortunately, he's not always around, and I usually end up kicking myself for doing too much at the end of the day. I am just a "little" stubborn and hard-headed sometimes! It's taking a while to sink in, but this past week, I have really tried to take it a little easier. Bed rest is just NOT an option when I have 8 other people to take care of!
#4. Please just pray for strength for us. Not just Dave and I, but our kids and family as well. Every single day, usually multiple times a day, I beg God for strength to get through this trial and He delivers!
We are so thankful for friends and family that pray for us! We can tell you are all just lifting us up in prayer! Your notes of encouragement and messages that let us know that you are praying mean so much! God is so good... all the time, God is good!
Psalm 33:20-22
We put our hope in the Lord. He is our help and our shield. In him our hearts rejoice, for we trust in his holy name. Let your unfailing love surround us, Lord, for our hope is in you alone.
We had an echocardiogram done on Kai a few weeks ago. It was not a real detailed echo, because I was only about 24 weeks along at the time. The doctor did see some quite complex issues and seemed very concerned. He had a hard time giving us a definite diagnosis because Kai was so wiggly!
On that note, this little boy moves 24-7! I've read that a lot of T18 babies are not very active, but God sure blessed us with a boy that moves and grooves all day (and night) long! I love every second of it! I can tell he's grown in the past couple weeks because the feeling of his movements have changed. =)
At our last couple sonograms, Kai has been growing bigger! Yay! Most T18 babies have very low birth weight, so they have been checking on him regularly and he seems to be keeping up! I am definitely doing my part on feeding him well!
In other news, I have been diagnosed with a condition called polyhydramnios. This basically means that I have too much amniotic fluid. We were told it is caused by 1of 3 things... #1. Kai hasn't properly developed the muscles to "swallow", #2. Kai's brain is not sending him the signal to swallow, or #3. Kai has a blockage in the esophagus area, which is not allowing him to swallow. For those that don't know, the baby usually swallows amniotic fluid on a regular basis and then urinates what is not needed. That process has been interrupted and my body continues to produce the fluid. It shouldn't cause any major issues with the baby, but they do plan on monitoring him (and me) regularly through sonograms and non-stress tests. In the meantime, this mama may be extremely uncomfortable! At my last appointment, I measured full term, even though I had 2 1/2 months left to go! Needless to say, bending over to pick something up is NOT my favorite thing right now! Thank you Lord for a hubby and kiddos that are willing to help... most of the time without even being asked! It's a good thing that I have that God-given talent of picking stuff up with my toes... that has sure been coming in handy lately!
I would like to ask for some specific prayers please!
#1. Our appointment with the pediatric cardiology specialist from Peoria is tomorrow...well, I guess today, Wednesday. Please pray for wisdom as the doctor diagnoses Kai's heart condition. Please pray for us as we are in this appointment. It's always nice to see our sweet boy on that screen, but it's always hard to hear the list of issues that he has. Just pray that Dave and I (and our family) will continue to trust in God's plan, no matter what the outcome.
#2. Please pray for us as we make some very difficult decisions over the next few weeks. Decisions that we never would've dreamed that we would have to make for our unborn child. Please pray that God will give us the wisdom and understanding to make decisions that we are confident with.
#3. Also, please pray for physical strength for me. With all of my pregnancies, I have felt great, right up to the day that I delivered. However, this diagnosis of polyhydramnios is obviously going to be something that will hinder me physically. I am a do-it-yourselfer, and I am not good at asking for help. My husband has been wonderful about making me stop and sit down and take breaks, even when I don't want to! I am so thankful for him! But, unfortunately, he's not always around, and I usually end up kicking myself for doing too much at the end of the day. I am just a "little" stubborn and hard-headed sometimes! It's taking a while to sink in, but this past week, I have really tried to take it a little easier. Bed rest is just NOT an option when I have 8 other people to take care of!
#4. Please just pray for strength for us. Not just Dave and I, but our kids and family as well. Every single day, usually multiple times a day, I beg God for strength to get through this trial and He delivers!
We are so thankful for friends and family that pray for us! We can tell you are all just lifting us up in prayer! Your notes of encouragement and messages that let us know that you are praying mean so much! God is so good... all the time, God is good!
Psalm 33:20-22
We put our hope in the Lord. He is our help and our shield. In him our hearts rejoice, for we trust in his holy name. Let your unfailing love surround us, Lord, for our hope is in you alone.
Tuesday, September 18, 2012
Our Baby's Name
We have been pleasantly overwhelmed and amazed by the outpouring of love and encouragement from so many of our friends and family, and even complete strangers! With so many people wanting to pray for this little guy and our family, we would to introduce you to him by name! God definitely had a hand in helping us chose his name and we would like to tell you the story behind it first.
We actually found out that we were pregnant the night before we left for North Carolina... our FIRST family vacation to the beach! Once we got to the beach and settled in, we decided it was time to make the announcement to our kids! We had them each write their names in the sand and took a picture of them next to it. Once they were all done, we wrote BABY #8 in the sand and I sat next to it. Dave called the kids over and with big eyes, they jumped for joy and were thrilled to be adding to our family!
When we got home, we had made an album of our vacation pictures and added that "Baby #8" picture in there. We shared the pictures with our parents and family members and that was how the baby was announced to them as well!
While we were on the beach for that week, we walked every morning around 10 a.m. Even though some mornings were overcast or rainy, the beauty of the ocean and the beach never ceased to amaze us! The kids would ask to go "shell searching", so we grabbed our sand pails and headed out! We had a certain direction that we would walk because at that time of day, there were plenty of shells to choose from. On about the 3rd day, Dave mentioned to me that he thought the broken shells were neat. He said, '"Isn't it amazing that these shells have been tossed and turned and smoothed by the waves? It makes each one unique and more beautiful, despite the fact that they are not whole." Looking down at my bucket, I noticed that most of mine were not whole. There were a few, but my favorites were those that weren't "perfect". This theme seemed to carry on with all of us. We would lay out our piles of shells at the beach house and talk about our favorite ones. We all saw the beauty in the unique, broken shells.
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In August, just days after we shared our story with our Pastor, he gave us an encouraging little book. Ironically, the title of the book was called "My Beautiful Broken Shell". The book tells how there is profound beauty in brokenness when placed in the hands of the Lord. Reading the book brought back that conversation that we had at the beach that day. Since day one of receiving the news of our baby's condition, we still believed that our baby was a wonderful , beautiful blessing despite the medical world telling us he is physically "broken". This baby is made exactly the way God wanted him, so to us, he is perfect.
After finding out there was a possibility of T18, we spent days hugging and holding each other every spare second we got.(We're huggy people anyways, so this was really no different!) Dave and I constantly said the words "Whatever happens, it is God's plan!" I bet some days, we said it 20 times a day. A couple of verses kept coming to our minds. One of those verses was Jeremiah 29:11, a very familiar verse that I always thought was good, but now I looked at it in a whole new light. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." God knows what's best for us, even when we don't understand!
After finding out for sure about our baby's condition, I couldn't help but have this gut-wrenching feeling that something was taken from us. We had been planning on bringing home a healthy baby. The girls and I would look at cute little baby clothes when we were out shopping and plan what we would like to buy. We planned on moving Tucker upstairs and maybe adding on a room addition since we would need a "baby room". One day, God took me to Jeremiah 1:5 - "Before I formed you in the womb, I knew you, before your were born, I set you apart.". It was kinda a DUH moment for me. We never had anything taken away from us! We were given this baby from the very beginning. Nothing had changed from the second this sweet babe was "formed in my womb". THIS situation is what God completely intended. No accident... no whoopsies, he didn't just "happen" to get an extra chromosome.
That verse has been on our fridge since we found out our news. The kids have drawn sweet pictures around the verse and wrote our baby's name around it. Dave has it on his phone. It is a perfect reminder that things are just the way that God intended them to be. Right away, we both agreed that his middle name should be "Jeremiah".
So it came time to start thinking of first names. (Boy names are so hard for us, that happens when you are on your 6th one!) There were a few that we liked, but we just didn't feel like they fit this little guy. After a couple weeks of racking our brains, I threw a name out at Dave. He decided he liked it and definitely wanted it to be on the list. That night, as I was searching the internet, I typed in the name. The first link I clicked on took me to the "meaning" of the name. The meaning was "OCEAN". My heart just jumped for joy. (Usually, we are not big on meanings when we come up with our kids' names. Ashton's name means "settlement from the ash-tree grove"...not exactly earth shaking! ha!) I mentioned it to Dave and he felt the same way that I did. The ocean has had such a special connection with this pregnancy, it made it just feel right! Next, we talked it over with the kids. Our family does everything as a team, so we wanted them to have a part of naming him too. It was unanimous, they loved it and loved the meaning! It was official, his first name would be "Kai" (pronounced Ky).
Kai Jeremiah... such a sweet, but strong name for our unique little boy!
We actually found out that we were pregnant the night before we left for North Carolina... our FIRST family vacation to the beach! Once we got to the beach and settled in, we decided it was time to make the announcement to our kids! We had them each write their names in the sand and took a picture of them next to it. Once they were all done, we wrote BABY #8 in the sand and I sat next to it. Dave called the kids over and with big eyes, they jumped for joy and were thrilled to be adding to our family!
When we got home, we had made an album of our vacation pictures and added that "Baby #8" picture in there. We shared the pictures with our parents and family members and that was how the baby was announced to them as well!
While we were on the beach for that week, we walked every morning around 10 a.m. Even though some mornings were overcast or rainy, the beauty of the ocean and the beach never ceased to amaze us! The kids would ask to go "shell searching", so we grabbed our sand pails and headed out! We had a certain direction that we would walk because at that time of day, there were plenty of shells to choose from. On about the 3rd day, Dave mentioned to me that he thought the broken shells were neat. He said, '"Isn't it amazing that these shells have been tossed and turned and smoothed by the waves? It makes each one unique and more beautiful, despite the fact that they are not whole." Looking down at my bucket, I noticed that most of mine were not whole. There were a few, but my favorites were those that weren't "perfect". This theme seemed to carry on with all of us. We would lay out our piles of shells at the beach house and talk about our favorite ones. We all saw the beauty in the unique, broken shells.
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In August, just days after we shared our story with our Pastor, he gave us an encouraging little book. Ironically, the title of the book was called "My Beautiful Broken Shell". The book tells how there is profound beauty in brokenness when placed in the hands of the Lord. Reading the book brought back that conversation that we had at the beach that day. Since day one of receiving the news of our baby's condition, we still believed that our baby was a wonderful , beautiful blessing despite the medical world telling us he is physically "broken". This baby is made exactly the way God wanted him, so to us, he is perfect.
After finding out there was a possibility of T18, we spent days hugging and holding each other every spare second we got.(We're huggy people anyways, so this was really no different!) Dave and I constantly said the words "Whatever happens, it is God's plan!" I bet some days, we said it 20 times a day. A couple of verses kept coming to our minds. One of those verses was Jeremiah 29:11, a very familiar verse that I always thought was good, but now I looked at it in a whole new light. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." God knows what's best for us, even when we don't understand!
After finding out for sure about our baby's condition, I couldn't help but have this gut-wrenching feeling that something was taken from us. We had been planning on bringing home a healthy baby. The girls and I would look at cute little baby clothes when we were out shopping and plan what we would like to buy. We planned on moving Tucker upstairs and maybe adding on a room addition since we would need a "baby room". One day, God took me to Jeremiah 1:5 - "Before I formed you in the womb, I knew you, before your were born, I set you apart.". It was kinda a DUH moment for me. We never had anything taken away from us! We were given this baby from the very beginning. Nothing had changed from the second this sweet babe was "formed in my womb". THIS situation is what God completely intended. No accident... no whoopsies, he didn't just "happen" to get an extra chromosome.
That verse has been on our fridge since we found out our news. The kids have drawn sweet pictures around the verse and wrote our baby's name around it. Dave has it on his phone. It is a perfect reminder that things are just the way that God intended them to be. Right away, we both agreed that his middle name should be "Jeremiah".
So it came time to start thinking of first names. (Boy names are so hard for us, that happens when you are on your 6th one!) There were a few that we liked, but we just didn't feel like they fit this little guy. After a couple weeks of racking our brains, I threw a name out at Dave. He decided he liked it and definitely wanted it to be on the list. That night, as I was searching the internet, I typed in the name. The first link I clicked on took me to the "meaning" of the name. The meaning was "OCEAN". My heart just jumped for joy. (Usually, we are not big on meanings when we come up with our kids' names. Ashton's name means "settlement from the ash-tree grove"...not exactly earth shaking! ha!) I mentioned it to Dave and he felt the same way that I did. The ocean has had such a special connection with this pregnancy, it made it just feel right! Next, we talked it over with the kids. Our family does everything as a team, so we wanted them to have a part of naming him too. It was unanimous, they loved it and loved the meaning! It was official, his first name would be "Kai" (pronounced Ky).
Kai Jeremiah... such a sweet, but strong name for our unique little boy!
Monday, September 17, 2012
Our Special Blessing
Many of our friends and family know that we are so excited to be expecting our 8th child! We are about 19 weeks along and our due date is February 7th! We figured we better give you an update since so much has gone on with this new little addition to our family!
SOOOO....let's rewind a couple months...
This pregnancy, we decided to do a new prenatal genetic screening. We have always declined in the past, but now they have a new accurate way of testing and we were encouraged to take part. If nothing else, we would at least get an ultrasound, which would confirm if there were 1 or 2 babies! (Normally, we wouldn't have an ultrasound until we were 17 weeks along.) We both felt totally comfortable with it and proceeded with the testing in August.
At our appointment for the testing, they went over family history and past pregnancy information first. (Oh how I love that I can say "no" to so many of those health risks!) With perfect pregnancies and pretty good family history (other than heart disease), the lady assured us that we were not likely to have any type of genetic problems with the baby. We went on to the next office, which was an ultrasound. During the ultrasound, they measure what's called the "nuchal translucency", which is fluid beneath the skin behind baby’s neck. The ultrasound tech assured us that it was within normal range. She also confirmed that we were having just ONE baby! It brought tears to our eyes instantly, when we saw that little body moving and bopping all around. The excitement just doubled, that baby was so real at that point. I could already feel that maternal NEED to hold and kiss all over that baby. As we left the office, Dave looked at me and said "I love your smile honey. You saw that baby and couldn't grin big enough. It just shows the love that you have for our children, even this early on." As we went upstairs to complete the last part of the test, which was a blood screen, I could feel my cheeks hurting. I couldn't get that smile off of my face. I looked over at Dave and he had the same bright smile! God is so good to bless us with yet another baby! I had my blood drawn and we headed home to share our exciting sonogram pictures with the kids.
Not another thought was given to the testing that was done that day until I got a call 5 days later. The lady told me that my blood work results come back and there was some concern. The blood screen measures 2 hormone levels. She told me that both of my hormone levels came back extremely low, which put me at a 1 in 5 chance of having a baby with Trisomy 18. Those words sent chills down my spine. She asked me immediately if I was aware of what Trisomy 18 was. Unfortunately, my answer was YES. I knew all too much about this horrific chromosome disorder. You see, one of my best friends had a sweet baby girl, Makayla, born with this disorder and I walked that hard path with her until Makayla died at 4 1/2 months old. Tears filled my eyes instantly.
A few quick facts about Trisomy 18:
* This disorder is caused by an extra 18th chromosome. Instead of getting just ONE chromosome from the father and ONE chromosome from the mother, the baby gets an "extra" chromosome at the time of conception.
* It is very rare. It takes place in about 1 in 6,000 babies.
* Majority of these babies die before birth, usually within the 2nd or 3rd trimester.
* Most of these babies have structural heart defects (usually multiple defects) and many other internal malformations. The results of these defects causes them to be labeled "incompatible with life".
* 90 - 95% of the babies born, will die within the first year.
* The average life span of the babies born is about 5 to 15 days.
We shared this news with our immediate family and close friends so that they could pray for us. Dave and I prayed every single day. We didn't just pray that this baby would NOT have the disorder, we prayed that we would be able to handle what God had given to us. We prayed that God would receive the glory no matter if this baby was in perfect health or in fact, did have Trisomy 18.
As Dave and I discussed it, we assured each other that we could get through this with God's help, no matter what the result was. We tried to think on the positive side. 1 in 5 meant we still had an 80% chance that the baby was perfectly normal. We were constantly assured that this was just a "screening" test and not a "diagnostic" test.
After talking with our doctor, we decided to do an amnio. It was the only way that we would know 100% if the baby had T18. We would have to wait 2 weeks to do the amnio. Those 2 weeks felt like an eternity.
In the following days (while waiting for our amnio), God led me to so many bible verses... most of those verses were about handling challenges and using God as your strength. I dug into my bible daily, searching for hope and for God's promises. My relationship with God became something that I have never experienced in my life. I knew that God was right there beside us the entire time. Dave and I leaned on each other every day, so many times, talking about what we felt God had laid upon our hearts. We tried NOT to talk about the "what if's", but both of us couldn't deny that those thoughts crept into our minds.
When it came time for the amnio, we both felt very peaceful and we knew that peace came from God! Before the amnio, we had an ultrasound. During the ultrasound, they came across some "soft markers" for Trisomy 18. They assured us that these markers were not a for-sure thing and it could just be that maybe we were not as far along as we thought we were. Dave and I were not "surprised" to see the markers, it was as if God had prepared our hearts. The amnio went smoothly and we would now have to wait for 3 days to get the results. Dave and I walked to the car and got in to drive away. We sat and cried and held each other a few minutes. I think we both knew in the back of our minds that we were about to face one of the hardest challenges in our life.
Monday came and we knew the call was going to come. We both knew what she was going to say. Sure enough, the results were in. It was 100% positive that our baby has Trisomy 18. Several times throughout the process of our testing, we were asked if we would terminate if the results were positive. Of course, that is not an option for us and they have been told that several times. That phone call was no different. "Do you wish to continue the pregnancy?" We responded with "Yes, we are sure we want to continue." She was sure to leave her number and let us know that if we change our minds, we could call her anytime. You see, 80% of women who are diagnosed with a Trisomy 18 baby, decide to immediately terminate. This is so sad to me and just breaks my heart. If we were to terminate, then that would interfere with God's purpose for this sweet baby. The thought of it just makes me shudder.
At the last second of the phone call, I asked the lady, "Can you tell us if it's a boy or a girl?" She said "Yes, you are having a boy." We couldn't help but smile through the tears! Another boy! Us girls are outnumbered and loving it!
We told the kids immediately about the trisomy and there was a lot of crying and even more questions. All we could tell them is that God created this sweet baby for a specific reason, this is the baby brother that God wanted you to have! He knew this baby's health would not be perfect, but He also knew that this baby would be a blessing to us! We told them that we may not get any time with this baby on Earth and if we do, it would probably be very short. BUT, thanks be to God, we will be able to spend eternity with this little guy! ETERNITY... Yes!! Thank you God for that promise!
In the next few days, we had to tell family and friends. They were all so supportive. We are so thankful for our church family as well. We've had many people tell us that they will pray for us. We know they've been praying because the comfort and peace that we've felt has been amazing! There will be hard days ahead and many tears as well, but we know that with God's strength, we will get through this!
It's been a few weeks since we've known the results, and even though we've felt sadness and heartache during these times, we have never, not even once, felt hopeless or depressed. We have been amazed how God gives us strength and helps us to see His purpose in this trying time.
We are honored that God saw fit to make us the parents of this sweet, special baby boy. We are determined to remain positive and enjoy this pregnancy and this baby boy while we can! He is just as much part of our family as any of our other children. We encourage our kids to talk about him and ask questions often! We don't know what the future holds for us or our baby. The one thing that we do know is that God promises to stand by our family through this challenge and He promises He will give us strength to get through it. All we have to do is just ask for it!
Isaiah 41:13 - For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.
SOOOO....let's rewind a couple months...
This pregnancy, we decided to do a new prenatal genetic screening. We have always declined in the past, but now they have a new accurate way of testing and we were encouraged to take part. If nothing else, we would at least get an ultrasound, which would confirm if there were 1 or 2 babies! (Normally, we wouldn't have an ultrasound until we were 17 weeks along.) We both felt totally comfortable with it and proceeded with the testing in August.
At our appointment for the testing, they went over family history and past pregnancy information first. (Oh how I love that I can say "no" to so many of those health risks!) With perfect pregnancies and pretty good family history (other than heart disease), the lady assured us that we were not likely to have any type of genetic problems with the baby. We went on to the next office, which was an ultrasound. During the ultrasound, they measure what's called the "nuchal translucency", which is fluid beneath the skin behind baby’s neck. The ultrasound tech assured us that it was within normal range. She also confirmed that we were having just ONE baby! It brought tears to our eyes instantly, when we saw that little body moving and bopping all around. The excitement just doubled, that baby was so real at that point. I could already feel that maternal NEED to hold and kiss all over that baby. As we left the office, Dave looked at me and said "I love your smile honey. You saw that baby and couldn't grin big enough. It just shows the love that you have for our children, even this early on." As we went upstairs to complete the last part of the test, which was a blood screen, I could feel my cheeks hurting. I couldn't get that smile off of my face. I looked over at Dave and he had the same bright smile! God is so good to bless us with yet another baby! I had my blood drawn and we headed home to share our exciting sonogram pictures with the kids.
 |
| For those that are sonogram savy, profile shot at the top right w/ little fists in the air. |
Not another thought was given to the testing that was done that day until I got a call 5 days later. The lady told me that my blood work results come back and there was some concern. The blood screen measures 2 hormone levels. She told me that both of my hormone levels came back extremely low, which put me at a 1 in 5 chance of having a baby with Trisomy 18. Those words sent chills down my spine. She asked me immediately if I was aware of what Trisomy 18 was. Unfortunately, my answer was YES. I knew all too much about this horrific chromosome disorder. You see, one of my best friends had a sweet baby girl, Makayla, born with this disorder and I walked that hard path with her until Makayla died at 4 1/2 months old. Tears filled my eyes instantly.
A few quick facts about Trisomy 18:
* This disorder is caused by an extra 18th chromosome. Instead of getting just ONE chromosome from the father and ONE chromosome from the mother, the baby gets an "extra" chromosome at the time of conception.
* It is very rare. It takes place in about 1 in 6,000 babies.
* Majority of these babies die before birth, usually within the 2nd or 3rd trimester.
* Most of these babies have structural heart defects (usually multiple defects) and many other internal malformations. The results of these defects causes them to be labeled "incompatible with life".
* 90 - 95% of the babies born, will die within the first year.
* The average life span of the babies born is about 5 to 15 days.
We shared this news with our immediate family and close friends so that they could pray for us. Dave and I prayed every single day. We didn't just pray that this baby would NOT have the disorder, we prayed that we would be able to handle what God had given to us. We prayed that God would receive the glory no matter if this baby was in perfect health or in fact, did have Trisomy 18.
As Dave and I discussed it, we assured each other that we could get through this with God's help, no matter what the result was. We tried to think on the positive side. 1 in 5 meant we still had an 80% chance that the baby was perfectly normal. We were constantly assured that this was just a "screening" test and not a "diagnostic" test.
After talking with our doctor, we decided to do an amnio. It was the only way that we would know 100% if the baby had T18. We would have to wait 2 weeks to do the amnio. Those 2 weeks felt like an eternity.
In the following days (while waiting for our amnio), God led me to so many bible verses... most of those verses were about handling challenges and using God as your strength. I dug into my bible daily, searching for hope and for God's promises. My relationship with God became something that I have never experienced in my life. I knew that God was right there beside us the entire time. Dave and I leaned on each other every day, so many times, talking about what we felt God had laid upon our hearts. We tried NOT to talk about the "what if's", but both of us couldn't deny that those thoughts crept into our minds.
When it came time for the amnio, we both felt very peaceful and we knew that peace came from God! Before the amnio, we had an ultrasound. During the ultrasound, they came across some "soft markers" for Trisomy 18. They assured us that these markers were not a for-sure thing and it could just be that maybe we were not as far along as we thought we were. Dave and I were not "surprised" to see the markers, it was as if God had prepared our hearts. The amnio went smoothly and we would now have to wait for 3 days to get the results. Dave and I walked to the car and got in to drive away. We sat and cried and held each other a few minutes. I think we both knew in the back of our minds that we were about to face one of the hardest challenges in our life.
Monday came and we knew the call was going to come. We both knew what she was going to say. Sure enough, the results were in. It was 100% positive that our baby has Trisomy 18. Several times throughout the process of our testing, we were asked if we would terminate if the results were positive. Of course, that is not an option for us and they have been told that several times. That phone call was no different. "Do you wish to continue the pregnancy?" We responded with "Yes, we are sure we want to continue." She was sure to leave her number and let us know that if we change our minds, we could call her anytime. You see, 80% of women who are diagnosed with a Trisomy 18 baby, decide to immediately terminate. This is so sad to me and just breaks my heart. If we were to terminate, then that would interfere with God's purpose for this sweet baby. The thought of it just makes me shudder.
At the last second of the phone call, I asked the lady, "Can you tell us if it's a boy or a girl?" She said "Yes, you are having a boy." We couldn't help but smile through the tears! Another boy! Us girls are outnumbered and loving it!
We told the kids immediately about the trisomy and there was a lot of crying and even more questions. All we could tell them is that God created this sweet baby for a specific reason, this is the baby brother that God wanted you to have! He knew this baby's health would not be perfect, but He also knew that this baby would be a blessing to us! We told them that we may not get any time with this baby on Earth and if we do, it would probably be very short. BUT, thanks be to God, we will be able to spend eternity with this little guy! ETERNITY... Yes!! Thank you God for that promise!
In the next few days, we had to tell family and friends. They were all so supportive. We are so thankful for our church family as well. We've had many people tell us that they will pray for us. We know they've been praying because the comfort and peace that we've felt has been amazing! There will be hard days ahead and many tears as well, but we know that with God's strength, we will get through this!
It's been a few weeks since we've known the results, and even though we've felt sadness and heartache during these times, we have never, not even once, felt hopeless or depressed. We have been amazed how God gives us strength and helps us to see His purpose in this trying time.
We are honored that God saw fit to make us the parents of this sweet, special baby boy. We are determined to remain positive and enjoy this pregnancy and this baby boy while we can! He is just as much part of our family as any of our other children. We encourage our kids to talk about him and ask questions often! We don't know what the future holds for us or our baby. The one thing that we do know is that God promises to stand by our family through this challenge and He promises He will give us strength to get through it. All we have to do is just ask for it!
Isaiah 41:13 - For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.
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