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





















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.

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.




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.

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! =)

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!

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. =)
 

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.