Click on the links below to read Warner's Journey in chronological order:

Baby W

So Blessed and Welcome to Holland

The Scientific Side of Things...Cody Style

Smiling Baby!

Thoughts

Come What May and Love It

Cherish

Difficult News...Praying for the best!

He Knoweth All Things

Tender Mercies

Baby W Pics

C-Section Date

Labor Begins

Warner Nathan Arrives

Warner's Service

Diagnosis

Family Pictures

Family Pictures

Here are the pictures that I promised. I hope you can feel the love that we felt for Warner Nathan for his short time here with us.

Warner's Service

We had Warner's service on May 17, 2010 and it was so perfect. There was an amazing, calming Spirit there the entire time. We had someone in Billings make a casket for Warner, and it was absolutely perfect...isn't it beautiful!? He made it on such short notice and I am so happy that we were able to get him to do it.

So many of our family members were able to be at Warner's service, and it was such a strength to us. Many people traveled far to be with us, we are so loved and blessed!

My Grandfather conducted the service. After a beautiful opening prayer by my sister, Amanda, Cody's family (Bert, Will, Missy, Sher, and Wendy) sang the 1st and 7th verse of "A Poor Wayfaring Man of Grief":

A poor wayfaring Man of grief
Hath often crossed me on my way,
Who sued so humbly for relief
That I could never answer nay.
I had not power to ask his name,
Whereto he went, or whence he came;
Yet there was something in his eye
That won my love; I knew not why

Then in a moment to my view
The stranger started from disguise.
The tokens in His hands I knew;
The Savior stood before mine eyes.
He spake, and my poor name He named,
“Of Me thou hast not been ashamed.
These deeds shall thy memorial be;
Fear not, thou didst them unto Me.”

It was beautiful. It was honestly hard to listen to because the Spirit was so strong, but I am so glad that they were able to sing it for us.

After the song my dad, Jim, spoke. He talked about all of the 'Happy Moments' that we had during the pregnancy and at Warner's birth. At one point in his talk he got out his cell phone...that sounds strange, but let me finish! I had sent him a voice message on December 7, 2009 of Warner's heart beating. He played that for everyone to hear, and it was so sweet. He went one to say that his heart was always beating so strong, which it was! He also talked about how when he and Bert went to put a few things in Warner's casket that one of them was a golf ball (per request of Cody, of course!). Dad said that he would miss not being able to play golf with him here on this earth, but that he would someday get to play with him. We can't wait for that round of golf! It was fun, and sad, to hear all of the good memories that he had.

Then Bert, Cody's dad, spoke. I am not sure how to summarize his words, so I will just share a few of his thoughts with you.

"Those of us who were privileged to be witnesses to the birth of this tiny one, were in the presence of angels, who were there to welcome him back into the arms of his very loving and gracious Heavenly Father after a very brief, yet glorious few moments on earth."

"In the overwhelming joy of his birth and unspeakable grief at his passing, we were blessed to have experienced a singularly remarkable thing...the arrival into mortality of one of God's choicest spirits..and yes...his departure from mortality as well."

He did such a wonderful job, he is so well versed. At the end he said, "Warner, would you somehow let Cody and Jim know how those celestial courses play?!" It was so funny! We are so thankful for our amazing fathers and the words that they shared.

Then my Grandpa Stan spoke and shared some amazing, uplifting words with us. He is an outstanding man and we are so blessed to have him in our lives. He shared some scriptures with us, and a couple of our favorites were:

John 9:1-3

"And as Jesus passed by, he saw a blind man which was blind from his birth, and his disciples ask him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered , Neither hath this man sinned, nor his parents; but that the WORKS OF GOD SHOULD BE MADE MANIFEST IN HIM."

3 Nephi 17:21-24

"...he wept, and the multitude bare record of it, and he took their little children, one by one, and blessed them, and prayed unto the Father for them. And when he had done this he wept again; And he spake unto the multitude, and said unto them: Behold your little ones. And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; did minister unto them."

My Grandfather then dedicated Warner's grave and the service was over. It was more perfect than we ever could have imagined. We are so grateful for everyone that participated and came to support us, and especially grateful for our sweet Warner.

Osteogenesis Imperfecta

After Warner passed away he had loads of testing done. X-rays and tissue samples helped to diagnose that Warner had Osteogenesis Imperfecta(OI), Type II. There are many different types in which survival is normal. In Type II, infants die shortly after birth. This is a skeletal dysplasia in which collagen does not properly form, some bones do not form correctly and are very brittle. In Warner's case, the cause of his death was because his ribs were extremely short, leaving little or no room for his lungs to develop. He passed away of respiratory complications, which was obvious when he was born. That is about all we know!

The chances of this happening in future pregnancies is very small. The chance that we passed OI to Warner is less than 1% (all couples have a 1% chance of birth defects), but there is a chance, and there is no way to test to see if we passed these genes to Warner or not. Yes, this is a little scary, but we trust in the Lord and also realize that the percentages are on our side. If we have another child with OI, we will then know that we did indeed pass the genes to our children, but let's just pray that doesn't happen. Then our chances of passing it to other children range from 10-50%. Details that we hope and pray we will never have to dive into!

Click Here for more information on the OI Foundation's Website

Warner Nathan Arrives

May 7, 2010

(Make sure you read the "Labor begins..."post before reading this post.)

Warner’s Birthday!

The morning actually passed pretty quickly. I wasn’t able to eat anything after midnight or drink anything after 9 am, so I got to really quick at 8:45 have 2 popsicles! They were pretty tasty, and they held me over for the next 12 hours! Bert and Erika came and visited in the morning. Erika stayed with me so that Cody could go and shower and get ready for the day. Erika was such a great help. She shopped for an outfit for Baby W to wear in some pictures, brought us food, and got me some essential things that I of course, forgot. We just chatted all morning while they pumped me full of more fluids and medications, checking my contractions every once in a while, which would start to escalate then go back to every 4 minutes when new drugs were given.

Around 10 Dr. R. and Dr. W. came in to talk with us. It was a very sad talk, but necessary. Cody and I had to make a decision on whether or not we would like the NICU team in the Operating Room ready to try and help our son live. The Dr.’s informed us that Baby W would probably only live for minutes, maybe an hour. We could give our baby to the NICU Dr.’s to have him poked and proded and put through pain, which would not help our baby’s chance of survival much at all; or, we could be given our sweet Baby W and spend as much time with him as possible, holding him and showing him our love. We didn’t want to see him go through pain for nothing, we knew his odds were slim, so we decided to just spend as much time with him as we could. If by some miracle he was crying when he was born, NICU Dr.’s could be there extremely quickly to help him. We didn’t feel upset about our decision, just comfort. We now know that the decision that we made was the perfect one.

My parents got into Omaha at noon, it was so good to see them! We felt so glad that at least Cody’s dad and my parents would be there to meet Baby W. They decided to go get some lunch, drop stuff off at our house, and a few other things before Baby W made his appearance. Cody and I just relaxed and waited for 4 pm to come. Honestly, there were still barely any tears, just comfort and understanding that whatever came our way in the next few hours we could handle.

At about 2:45 I got extremely tired and decided to rest for just a half hour or so before they started to prep me for surgery. At 3:00 on the dot I was abruptly woken up because I was PEEING my pants! I was so embarrassed I told Cody to turn the other way because I was peeing my pants…I couldn’t believe that I could not control my bladder! So much went through my head, maybe it was because of all the fluids being pumped into me…ahhh! I was seriously shocked that I couldn’t stop…then about 30 seconds later I realized that my water had broke. Seriously, my water broke?! That wasn’t supposed to happen, I was having a c-section in an hour, why would my water break?! Well, I guess someone was watching out for us. It was no big deal that Baby W decided to come right then and there because all parents were in town or on their way. Good thing that my Dr.’s were listening to their instincts, I can’t imagine how much worse this whole experience would have been if I had to have an emergency c-section, none of our family was there and we were left to do this very hard thing all on our own. I can’t thank them enough for having the intuition, the intelligence, the prompting to schedule my c-section and get family here asap, before Baby W tried to come on his own. I am also SOOO glad that I was in a hospital bed when literally 4 buckets of water (I thought 3, my nurse thought 4!) started pouring out of me. I would DIE if that happened in Wal-Mart!! Speaking of my nurse, she was amazing, out of this world, couldn’t have done this without her. Her name was Jodi, she seriously rocked. She was my day nurse the 7^th, 8^th, and 9^th. She did everything for us from hunting down a photographer for the birth (it seriously took her all day), to arranging things with funeral homes, to waiting on me hand and foot. I can’t believe how awesome she was. Even our parents couldn’t believe how great she was. We will never forget Jodi, that is for sure.

From the time my water broke to surgery time it was a little crazy. They switched us rooms so that we would be in a room 3x the size of a normal room after the delivery. We wanted to make sure all family could fit with us and that I could be recovered in the same room so that we could spend as much time with Baby W as possible. Cody called my parents and his, and found out that his mom had landed 15 minutes early! Everything worked in our favor, I can’t believe how perfect everything was going. Cody, my mom and dad changed into scrubs (everyone got into scrubs so that they could stand outside the OR. We wanted to make sure that they saw Baby W alive and they couldn’t, except Cody, come in the OR, so that was the best option). Aaron, Erika and Will came into the room next and got into their scrubs. Erika was prepped and ready with her camera, and I am so glad that she was! She got some amazing pictures which we will cherish forever. The photographer that Jodi found for us got there at 3:30, she worked with Now I Lay Me Down to Sleep. This organization is amazing! I know that our photographer got some amazing pictures, and I can’t wait to see them. She asked Cody to fill out a permission slip quickly before we went into surgery. On the permission slip it asked for the baby’s name. We had been calling him Barrett for months, but the past few weeks I hadn’t loved it. I have been pushing for Warner (Cody’s middle name, his mom’s maiden name) ever since we have wanted a baby. We did know that his middle name would be Nathan, after my brother. He didn’t even ask me, he just named him Warner Nathan Winterholler. After he filled out the sheet and gave it back to her, he came up to me and said, “I named our son.” I got a big smile and laughed, “Really?! What is his name?!” I didn’t even care at all! I was just excited that he had a name that we could call him right when he was born. Anyway, the photographer was able to come in the OR and spent 1.5 hours with us after Warner was born. I am so anxious to see her work, I know it will be beautiful.

Dr. W. came into my room, and it began. They rolled me down the hall with Cody right by me, and our entire family following. I am sure that was a sight to see. We stopped at the door of the OR and Bert and Laurel came out (they weren’t in the room with everyone else, they changed in a room near the OR.) Anyway, parents hugged and kissed us and into the OR we went.

Cody was by me the entire time, which made the uncontrollable shaking much more bearable. (They give you drugs that seriously make you shake like you are in Antarctica without a coat for HOURS.) Okay, he made every part of this more bearable. What an amazing husband I have…I could never ask for anyone better to go through this with. He is strong when he needs to be, sad when he needs to be, always in perspective, strengthens me in every way; amazing.

The surgery began and Cody just held me and talked to me; tried to distract me a little; but let’s be honest, he was feeling exactly what I was. We knew Warner wasn’t going to make it long, and just wanted to meet him. Just wanted to hold him, to see what he looked like. We didn’t have any tears, there really was overwhelming comfort in the room. After only about 10 minutes, we got to meet Warner. They came quick and showed him to us, what a beautiful moment that was. They then rushed him to the table and checked his heart rate…it was 80 bpm, in the womb it was much higher. We knew we only had a few minutes with our sweet son. They brought him back to Cody and he held him while they began to stitch me. It was so amazing to see Cody as a daddy! He was so great with him, even as I could see Cody was so sad for his son. Warner was having extremely labored breathing, we could see him trying so hard to take a breath and not being able to. It really ripped your heart out to know that as earthly parents we could do nothing to help him. We would see the area between his ribs and his abdominal cavity contract for a few seconds, then helplessly let back out. He would only try to breath once every couple of minutes. They loosened my arms and I was able to hold Warner, it was such a special moment! I did feel the tiniest bit sad, but I was 99% happy to be meeting my son! I talked with him about maybe staying here on earth a little longer, about the good work that he was going to do up in Heaven, about meeting his cousin David and them playing. I really had sweet conversation with him as I tried to study his every curve and feature. After about 10 minutes, I wanted Cody to show him to our family so that they could see him alive. They all came to the door of the OR and Cody held him while they looked at his precious face. It was hard for Cody, I could tell, but we wanted the Grandparents to meet little Warner so bad. Cody came back in, and they checked Warner’s heart rate once more. He still had one! It was lowered to a 40 but he was still with us. They switched me to a rolling bed, (Yes, they were already done stitching me up…15 minutes and done! My doctors were awesome! Before the surgery started the Dr. said, “Chelsea’s goal is to be on this operating table as little time as possible, let’s go.” They definitely accomplished that and let me spend as much time with Warner as was possible.) gave me Warner, and I was off to a large recovery room that all of our family could join us in. I loved holding my son as we were pushed down the hall, I felt like a proud mother to be holding such a perfect being. I felt so good to hold him and cuddle him.

Once in the room Cody and I continued to hold and love Warner, pictures were taken like crazy (which I am absolutely elated about!), and all of our family had the opportunity to hold him. No one was really crying uncontrollably; Warner brought such a calm, comforting spirit with him saying, “All is well”. We got to examine his sweet head that was covered with dark, CURLY hair! It was amazing how beautiful his hair was, everyone went crazy when we took off the beanie he was wearing. After 25 more minutes of loving our son, Dr. R. needed to check his heart rate. He no longer had one, but had lived for 40 precious minutes here on earth. What a perfect being that we were able to hold in our arms. I can’t wait to meet our little man again in just 80 short years! I know he is doing work that needs to be done and loving every minute of it. I know he is sad when we cry because he is happy where he is now. I am so comforted every moment of every day know that he is in safe arms, knowing that we will see his sweet face again, knowing that he, Cody, and I will always be together in eternity. All is well.

Words cannot express the love that we have felt in the past months and especially the past couple of weeks of our lives. We have so many dear friends and family members who have shown us more love than we could have ever expected. We wish that we could thank each of you, but if you only knew how many of you there were! We love you all and thank you a million times over for your prayers in the past as well as for your continued prayers of comfort for us and our family.

(We will have many more photos to post of our beautiful baby boy in about 6 weeks, when we get them back from the photographer, so check in to see how handsome he is!)

Labor begins...

May 5, 2010

Cody and I went to our Dr.’s appointment with Dr. R. and we got to see Baby W right away. The past few appointments he has been looking straight at us and moving all over the place! It has been fun to see him moving so much, especially when I could only feel him every once in a while.

When Dr. R. came in they measured my amniotic fluid, and it was at a 33…I guess normal is 20-25. This concerned him so they hooked me up to the contraction monitor and I was having contractions. I had been having a few more aches and pains but nothing that I would have equated to contractions. Two nights before my appointment I was up for about 3 hours every 15 minutes with back pain, which I decided were contractions later on; but that was the only experience I had with actually feeling contractions. Due to my fluid levels being that of someone about to go into labor and my consistent contractions, Dr. R. decided to check my cervix and I was not dialated. I already had an appointment with Dr. W. (my ob) for the next day, so Dr. R. decided that she could check my cervix as well and then I would see him 3 days later, just to keep a close eye on me.

Also at this appointment nurses from the ‘comfort care’ program talked to us a little about our wishes for a birth plan. This was pretty surreal, talking about if we would like at home care for baby, if we would want to be the only ones to spend time with him if he lived for a short time, etc.

May 6, 2010

I worked until 11 on Thursday the 6^th, and Cody was scheduled to play golf with a couple of friends at noon. I had a feeling that maybe Cody should come to my appointment at 12 with Dr. W., but it wasn’t too overwhelming and I knew that he would only be 30 minutes away if I needed him.

Dr. W. was ready to listen to Baby W’s heartbeat and when she felt my tummy she was totally shocked at how hard it was. I have been feeling like it has been tighter, but Erika, Cody’s sister, has been commenting that my belly has been tight since the very beginning so I haven’t thought much of it. She listed to Baby W’s heartbeat…strong as always, 168. Then she checked my cervix…uh oh…dialated to a 1. I wasn’t dialated the day before so she hooked me up to the contraction monitor once again. My contractions were happening every 45 sec-1 minute! I still could not feel anything, woo-hoo for pain free! Dr. W. called Dr. R. and after talking for a while about my fluid levels, my dialation and my contractions, they decided that Baby W was going to try and be born in the upcoming days. Since we knew that Baby W probably wouldn’t be able to make it through a vaginal delivery and survive, we scheduled a c-section for 26 hours later. I know this sounds crazy, but a huge weight was lifted when she told me we were going to deliver Baby W. It has been MONTHS of not knowing how our Baby would be born; alive? Healthy? Somewhat healthy? Breathing? There have been so many questions in the past months and it felt good to know that in one day, all of our questions would be answered. I was relieved and overwhelmed to know that we would meet our baby, if only for a minute, the very next day. That gave our parents just 26 hours to get to Nebraska.

Dr. W. let me go home and gather my things, as well as gather my husband from the golf course! We called our parents and got them on their way. My parents decided to drive the 13 hours. Cody’s dad would fly out immediately and be there by midnight on the 6^th. Cody’s mom and Will decided to leave on a 11 am flight, which put them into Omaha at 3:30, just a mere 30 minutes before the c-section was scheduled.

I was admitted and they started giving me fluids like none other! Holy cow I never knew that I could pee as much as I did that day! The fluids along with a couple other drugs helped to slow down my contractions, the last thing we wanted was for me to go into labor, especially before our parents were able to get to Omaha. They also gave me steroid shots to help Baby W’s lungs, HOLY MOLY! Those were PAINFUL! Seriously, the worst shot I have ever had, and that is including the spinal block they gave me the next day. I hope I never need steroid shots ever again. We just sat at the hospital preparing ourselves for the next day. There weren’t many tears, we honestly weren’t scared, just ready to see our family and meet our little boy. So much comfort was felt, I wish I could explain it.

Warner Nathan Winterholler

Warner Nathan Winterholler

Born: May 7, 2010

4:28 pm

3 pounds 2 ounces

13 inches

Passed: May 7, 2010

5:08 pm

C-Section Date

(Is this picture precious or what?!?!?!?!) Well, we set a date. I am not sure how I feel. I am praying with every ounce of me that our little guy can prove everyone wrong and make it to May 26th and 7:15 am. I want to hold him so bad, I want to hear our baby cry. There is still a high possibility that our sweet Baby W's heart won't be able to survive that long, which breaks our hearts. I am scared every day that I won't feel him move and we will have to go in to an ultrasound and not hear his tiny heart beating. At the same time, I am so happy that we now have a date in the future when we will actually know more! I am so tired of the unknown...unless it is that the unknown is that this is all fake, then I will tell you I LOVE the unknown! No matter what happens, we are so anxious to hold our Baby W. We can't wait to see his face and kiss him, no matter how short or long the moment may be. Let's pray that it will be long, like somewhere around 80 years long!

Another Dr. R. appointment tomorrow, let's hope nothing new has happened...

Baby W Pics

Well, we had another appointment with Dr. R...no new news. Everything looked the same. Baby W's fluid levels in his abdominal cavity hadn't increased (It has only been 6 days though). The appointment wasn't too eventful, except for the fact that we got to see Baby W in ACTION! He was sitting facing out this time, which he rarely does, so the ultrasound tech was able to let us watch him move around in 3-D. It was so funny because right before she changed it to 3-D Cody said, "I wonder if he EVER moves his arms from under his chin, it seems like he is always sitting with them like that." I, in response, said, "No, I don't know if he can move them, I think that is how they are" (rather snotty-like!). Literally 5 seconds later she changed it to 3-D and there was Baby W, waving his arms everywhere! Ha! Proved me wrong! Lately I think he has been putting his tiny hand up under my right ribs...something is there anyway...believe me, it is not comfy! Anyway, the pic at the top is when he was waving away at us...so cute!

Okay, you may not believe me, but he opened his eyes too! The picture above is right when he was opening, it is kind of hard to see. His right eye is open just a little bit...it was pretty crazy! I didn't know that they could do that. He was also moving his mouth all over, it is so neat to watch him in there. (The reason the outsides of the pictures and sometimes his face is blurry is because of the amniotic fluid).

Last, but not least, a not-so-fun, but very informative picture. This is a side view of Baby W. You can see that his upper chest, where his heart and lungs are, is small compared to his abdominal cavity. His entire torso should be one big oval, but his rib area is just so small. You can also see a little bit of the fluid around his abdominal cavity. It hasn't moved into his upper chest yet, so that is good. Hopefully that fluid stays just where it is! (Or just disappears...that would be nice, too!!!)

Tender Mercies

I have been debating what to write in this blog entry since Friday. It is so hard to express everything that we are feeling, but I know that one day I will look back on these entries to reflect this time of our lives. I SO wish that I could say that everything looked great at this appointment, that SOMEHOW our Baby W was going to come to us as a healthy, average little boy. Unfortunately, I once again was dreading this appointment. We have learned that when I am not looking forward to an appointment it is usually that maternal instinct and things don't end up quite how we had planned. (The first ever US I dreaded and we found out he was a little person, then the US that we found our his ribs were caving in, now this one. The few in between that haven't born much bad news I have felt fine going to. Sorry, needless re-cap.) This appointment was no different.

We heard quite a few things in this appointment that I didn't even know were in the spectrum of what we were dealing with. Dr. R. asked me right when he walked in the room if I was feeling Baby W move. The past 2 weeks I have had a decrease in movement from the 2 weeks prior. Thank heavens I hadn't realized that until he asked me, or I would have been freaking out more than I already am! I used to feel harder kicks and more rolling, lately it has been small bumps only after I eat. So, right away we knew something wasn't right, simply because of Baby W's movement.

We first listened to Baby W's heart rate, which was 168bpm, normal for him. Dr. R. showed us his rib area and told us that the ribs are continuing to grow inward, leaving no room for the lungs to develop. He has never said that the lungs cannot develop at all, so that scared us quite a bit. He explained that the ribs have grown in so much that the heart in beginning to have some troubles expanding as well. I was not aware that it could get so bad that not even the heart would be able to beat, so this was a surprise to me. I guess it makes sense, I just didn't realize it was an option.

Next, Dr. R. showed us his abdominal cavity. The AC is still growing and is of normal size, but it is beginning to get fluid in it. This fluid will begin to work it's way up towards the rib area, therefore squishing the heart and lungs further. In the appointments they tell us so much that we aren't always sure that everything we come away with we comprehended correctly, so it is hard. We think that the fluid is building up in the AC because the heart is beginning not to function properly, therefore not being able to pump all of the fluid around the body as well as it should be able to.

We again talked about a vaginal birth or a c-section, like we do every time. It seems that Baby W's head is too round already, because of the sutures closing, for me to have him vaginally; but you never really know. Dr. R. would like me to get bigger before a c-section because the more your muscles stretch the easier recovery is. But, we can only control so much, so when it is time, it is time. Hopefully that time is 36 weeks, just to give Baby W the best chance that we can. If he doesn't make it that long, we cross that bridge when we get there.

Well, that's that.

I think the reason that I put this blog off for a few days was because I felt like there was nothing positive to say. We have been down, let's be honest. This is hard. Really, really, hard. Sometimes I just ache for our Baby W. Today in church we were talking about the blessings of trials. Right now it is so hard to see the blessings that will come from this trial. Then someone commented about the tender mercies from the Lord that we receive constantly during our trials that we may not realize. I have been trying to pay attention to these little blessings because I know that they can help us so much. Today, for example, it was 9:30 and I hadn't felt Baby W move yet. Of course, I am now much more aware of his movements because I want to feel them SOO bad, just to know that he is still okay. I said a quick prayer and said to Baby W, "Please move Baby". Literally 4 seconds later I got a nudge from him. What a quick answer to prayer! It made me smile immediately and I thanked Heavenly Father right away for that small blessing. We feel so much comfort from the Spirit whenever we get down. I know I have said this before, but I can truly feel the blessings from all of the prayers that are offered on our behalf. 90% of the time when I begin to cry, within 10 seconds I am comforted and am able to see the eternal blessings of this trial. Please keep praying for us, I know that it is helping each and every day!

Another example is the comfort that we feel that we know that we can be with our Baby W for all eternity. That we can see him again and raise him. It makes things so much easier to think that way! It is amazing that ANYONE can be with their families forever simply by living the gospel righteously.

I am not going to lie, even if 82 doctors told me that Baby wasn't going to make it, I would still feel how I feel now...I have this little tiny bit of hope deep down inside that something will change. That he will be born and defeat the odds! I would be crazy not to hold out a little for the chance that we may still get to play with our little guy! And yet, I know, that Heavenly Father knows us, knows our circumstances, knows Baby W and what he needs. I know that whatever happens is exactly what was supposed to occur. The testimony, faith and trust that we both (and all of our family and friends) have in our Savior will pull us through this trial.

He Knoweth All Things

Another visit with Dr. R has came and went...we are 2 weeks closer to meeting Baby W! This visit was pretty uneventful, except for the fact that we got some A+ pictures of our little guy. I seriously freaked out when he showed us these 3-D pictures of his face.

I can't believe how much he has changed since the last time we saw him in 3-D, about 8 weeks ago. His face looks so much chubbier, and I love that I can really see the definition of all of his features. We got to see his arms and legs in 3-D, too, so that was fun. He had his arms bent up under his face like he was getting ready to fight...hopefully he will be a fighter when he is born...that is exactly what we will need from him. You can see his hands at the bottom of the first picture. They are all a little blurry because we had a bad angle, and we were looking through a thick layer of fluid. He is sitting breach right now with his legs bent and feet up under his bum, so we didn't get to see his lower legs. He was moving all over during the ultrasound, though, so that was fun. It is weird to see him moving and not feel it! I have been feeling little bumps from Baby W a lot more often, but every once in a while he will go like 1 1/2 days without me feeling anything. I can't wait for Cody to feel him...hopefully Baby W starts kicking harder so he can!

This picture is so funny, it totally looks like he is blowing a bubble!

Hmm...now for an update. There isn't too much to say today, which is actually a good thing! I felt a little relief when we left the appointment...When I told my sister that she said that is because the last 5 appointments have had tons of new, not-so-good news to report; no wonder this one was a relief!

Dr. R. couldn't see much of a change in the shape of Baby W's ribs since our checkup 2 weeks ago. This is good news, but at the same time, 2 weeks isn't much time for a change to be measured. We got to look at Baby W's heart quite a bit. In an average baby, the heart consists of 50% of the chest cavity. Baby W's heart consists of about 90% of his chest. This is not because his heart is so big, but because of the 'bowing in' of the ribs. The lungs are on each side of the heart, and that leaves only about 10% of his chest for the lungs to develop in. It was pretty crazy to see how little the space was for them. The heart just seems so big! (He must be a lover!) It was neat to watch his heart beat so quickly as we were looking at him, about 168 BPM, whew! Dr. R. said that Baby W pretty much looks like me right now, 7 months pregnant! You can see in the ultrasounds, his belly is really large compared to his chest cavity. (His belly is growing at the correct rate, as well as his head, but everything else is small.) I thought that was a good comparison, though.

Dr. R. can't see any cloverleaf or frontal bossing of his forehead, which is an additional sign sometimes shown in TD babies. This could still develop, as he is changing and growing every day.

(I am sure some of this gets so boring, but it is good for me to document everything for my memory!) We talked more about a delivery date, which is now around May 23, which is at 36 weeks. They DO NOT WANT me to go into labor on my own. We want to have my labor as planned as possible, because we want every specialty doctor there who needs to be there to ensure that Baby W gets the correct care as soon as possible after delivery. It does make me sad to think that when I have our baby, others will most likely spend his first few minutes/hours with him other than us. I so want to hold him and help him, but I know that the doctors that will be present will be able to help him much better that Cody or I. They may take an amnio test to make sure that Baby W's lungs are as developed as they need to be to be born at 36 weeks. If they are not quite developed enough, I will get steroids and then 48 hours later we will deliver, just to give his lungs a little extra time. It still sounds like a c-section will be best for Baby W, but we are not 100%, it all depends on the size of Baby W's head. Honestly, I don't care how he is delivered, I just want to do what is least stressful for him.

We read a fact today that the chances of this happening is 1 in 50,000. FIFTY THOUSAND! Seriously, this is so unlikely. I was talking to a friend this week who said she was in a class the other day and the teacher asked her, "If you could ask God one thing, what would it be?" She lost her 30 year old brother to cancer a year and a half ago, and she said that she would probably ask God "Why did you take my brother at such a young age?". I told her, obviously, that I would ask "Why us, out of all of the families here, why Baby W?" We continued on to speak of God's amazing knowledge of each of us and our situations. In the Book of Mormon, there is a scripture that states, "But behold, all things have been done in the wisdom of Him who knoweth all things". As I have thought about this scripture and our previous questions, I realized that we don't need to ask Him these questions, but just have faith in the fact that He "Knoweth all things". I have so many questions, so many worries about what is going to happen in these next couple months of our lives. Will Baby W continue to grow and make it to 36 weeks? Will Baby W pass away prior to his birth? How long will Baby W live after his birth? Could we witness a miracle and have this all just be a memory? Can the doctors be wrong? Will his ribs continue to bow in? Is Baby W going to live for minutes? Hours? Years?

The questions will continue to come, and the only way I know to make it through this trial is to turn to God and to those who love us here on this earth. To continue to pray, to have faith, and to remember that He Knoweth All Things. He knows all of our struggles and our heartaches, as well as our joys.

Thank you to all of you who are continually keeping our little family in your prayers, we can feel it daily. I honestly am saddened at times, but only for a few seconds, and then I am completely taken over and comforted. I know that this is because of the prayers of comfort that each of you are asking for us. I am so grateful for the comfort that I receive daily, it makes this struggle SO MUCH easier to go through. We love all of you so much and can feel your love for us as well. Keep those prayers coming, they are helping so much!

Difficult news...praying for the best!

Baby W was chit-chatting with us during our ultrasound, moving his lips all over the place! It is so fun to see him moving around in there, because I don't always feel him. I have been feeling him way more often though, which is so great! I love to feel him rolling around, getting hiccups (just once) and getting a tiny nudge here and there. He is sitting SO low right now! I have just started to have some sciatic pain, which is not fun at all! I guess I can't complain though, because I have had a pretty perfect pregnancy.

We saw Dr. R. yesterday, and he gave us the news that we o-so-didn't want to hear. Baby W's 'achondroplasia' diagnosis has been changed to a type of dwarfism called 'thanatophoric dysplasia' (which I will now just refer to as "TD"). TD is lethal in 90-95% of cases in the first few days of life. The pictures that we have really help explain it a little better.

The picture above is from Baby W's back side. His head is on the right, stomach/bum on the left. As you can see, his ribs (toward the right) are 'bowing in'. They should be more of an oval shape.

The picture above is just of baby W's mid-section. You can see the white lines on each side of him in a slight "S" shape, these are his ribs 'bowing' in, instead of out. In an average child, the baby's more of an oval shape than our little man. His stomach and head continue to grow as they should, as well as all of his organs. Unfortunately, his heart and lungs are located in the upper part of his body, within the ribs. They are also able to continue to grow, but the area that they take up is not able to house them as they get larger. Right now, I am breathing for Baby W. He is not using his lungs at all, so this doesn't pose a huge problem until he is born and tries to breath. There is no room for his lungs to expand and breath for himself. From what we understand, he should be okay until birth (at this point in time) and at that time they will try their best to assist him in his breathing. They can only inflate his lungs so far without the pressure from the ribs working against the doctors, therefore having the lungs burst. Hopefully Baby W will keep his ribs large enough to house his lungs without problems.

Baby W did show some growth, which we were very happy to see. If we see the growth stop, there is a chance that we would deliver Baby W in just 5 weeks from now. If he continues to grow, at 36 weeks, which is 9 weeks from now, we will decide whether to deliver or continue until 40 weeks. It all depends on what he decides to do in there.

We are praying to beat the odds and make it into the 5% of survival cases, but know that whatever happens we can be with our little man again after this life. Keep him in your prayers!

Cherish

Cody's sister and her family sent me a package today...I think I cried for 5 minutes after opening it. This small necklace means more to me than I can ever express. I know I will cherish it for the rest of my life! What an amazing reminder of staying positive, no matter what challenges you may be facing. Thank you, Thank you, Thank you!

Come What May and Love it

Well, where to begin. I just keep thinking, "I want to go to Holland! Let us go to Holland!" (If you are not sure what I am talking about, read this post.) In the past 6 weeks a lot has changed for us. We went from expecting an average height baby to a little person. This, at first was a big shock. After the first few weeks we stopped worrying about the fact that our Baby W was going to be a little person. We started to worry about his development; but after our second ultrasound, everything looked great with Baby W and that put some of our fears at ease.

This week we had our third appointment with Dr. R., our perinatologist. I hate to admit it, but I was dreading it. I never knew what maternal instinct was, but now I am very familiar with it! All morning (which was better than weeks before the first ultrasound), I was super nervous and just didn't really want to go. Time passes too quickly when you aren't really looking forward to something, doesn't it?!

We began the ultrasound...which, by the way, is MUCH better in a perinatologist's office! All of the tech's that we have had are amazing, they just zip around so quickly compared to ones in a normal doc's office. Sorry, that was random! The tech measured everything, and Baby W sure was looking cute! I felt like he looked a little bit longer at the ultrasound, so that was fun. He had both his arms up under his chin like he was posing for a picture...he is already practicing for me! Ha! The tech did all of the measurements, then Dr. R. came in. Right when he came in, she showed him all of the measurements and looked a little concerned. He said something to the tech asking about if "that measurement is really that small". He went on to show us that his top two ribs on each side are starting to be concave. They are growing in, instead of in a "C" shape like they should be. Of course, I lost it a little. This is why we are going to our ultrasounds, this is all that Dr. R. is really looking for each time we visit, because it can be fatal for our little man. He measures everything else but is only really concerned about the shape of his abdominal cavity. Obviously, the abdominal cavity houses all of our organs. If Baby W's organs continue to grow(which we obviously want) but his ribs cannot house the organs, he won't make it. Dr. R. said that Baby W can still survive with just 2 ribs starting to grow incorrectly, but that he will have some difficulties. He didn't tell us what, I think because he saw how overwhelmed I was with seeing EXACTLY what we didn't want to happen start happening in our precious Baby W. He did tell us that this CAN effect ONLY the top portion of the ribs, but that he cannot tell us if that will be Baby W's case. It may continue to progress and all of the ribs will grow incorrectly, or it may stick to just those two. We want TWO! We want TWO! Optimism is key, right?!!

Dr. R. also said that Baby W is a little small. He has to guess the baby's weight because in a normal pregnancy, the baby's weight is estimated by measuring the length of his femur. Obviously, Baby W's femur is not the same as other children's, so Dr.'s simply have to guess. He guessed that Baby W was probably 14 oz., which is small. We are not sure how small, but then again, we aren't sure of much.

Next he asked if I was feeling Baby W move. I DON'T KNOW! It sounds so stupid, but maybe because it is my first pregnancy I can't really tell. Last Saturday I felt some fluttering for about 10 minutes, then on Tuesday I felt a quick punch, as well as on Thursday. They were so quick that I am not positive though, part of me thinks that I am just making it up! Dr. R. said that he was seeing "a little movement" but that if I don't feel baby W move he wants me to come see him. Hmmm...I don't think I am really feeling him move ever, so does that mean I can go see Dr. R. every day!? Ha. Anyway, moral of the story, Baby W needs to start moving around in there so we don't have to worry so much about him...come on Baby!

I don't know if I can explain how I am feeling, mainly because we don't know what is going to happen. Part of me wants to be completely optimistic that Baby W will make it here just fine, that somehow this will all be inaccurate, that we can still go to Holland, and just have a healthy little person. (Okay, I am sure, if he is not healthy, that it will just be South Africa, and we will re-adjust, just like we changed our plans from Italy to Holland!) Then, the other part of me is doom and gloom. I don't want to lose our Baby W. I don't want him to be hurting. I don't want to feel the pain of losing a child. I don't want to face the challenges ahead of us.

I don't know how we could go through this without a knowledge of our Lord. A leader in our church, Joseph B. Wirthlin, said this,

"If we approach adversities wisely, our hardest times can be times of greatest growth, which in turn can lead toward times of greatest happiness {...} Come what may, and love it."

I know that we will need to remind ourselves of this each day, and that some days will be much harder than others. But I also know that if we can do this, if we can pray for comfort and understanding, that we can get through this.

To be honest, I am not really 'worried' about what is going to happen in the future. I am extremely anxious to know what is going to happen, but not worried. I know that we will be able to handle whatever is put in front of us. Whether that be a healthy little boy, a little boy who needs lots of assistance and surgeries, or that we are not able to be with this little boy here on this earth. I know that no matter what happens, we get to be together for all eternity! What an amazing blessing that is to know. I know that if we continue to rely on the Lord that he will help us with whatever trials come our way. We are so thankful for all of the prayers that are being said for our family, and want you to keep them coming! We know that the power of prayer is beyond anything that we can imagine. Prayer can make miracles, and can also send comfort. We will take either! A miracle would be ideal! However, we know that comfort may be what we need, and we will keep the motto, "Come What May and Love It."

Thoughts

Just a few thoughts as of late...

-As each day passes I am more excited to be 'mommy and daddy'. I can't wait to meet this little guy. Much to my surprise, as each day passes I also get a little more nervous. I know he is just a normal baby, but the more I learn and study about achon, the more I realize that there are many things other than the normal to think about. I am worried about my son not making it here to us. I am worried about his safety when he sleeps, I am worried about his little spine developing after he is born. I am worried about what car seat to buy him so I don't harm his back. I am worried about laying him down alone and him not being able to breathe. I am sure that so many of these things will come with time; I will get more comfortable with how to take care of my little guy and all will be fine. These are just things that I think about from time to time.

-I am so thankful for my faith. I don't know what I would do without a God to talk to every day. I am sure that some days he gets sick of me I talk with him so much! He is such a comfort to me in knowing that our little boy is just how he is supposed to be.

-I can't imagine going through this with anyone but Cody. What an amazing husband he is. So calm and rational. My many breakdowns are sometimes approached with kind words, and sometimes just hugs. Whatever way he chooses to console me seems to be the perfect way at the time. I am so grateful for his education. Although at times I don't see him as much as I either of us would like, I know that it is what he needs to be doing right now to secure the future for our family. I am so blessed to have a husband who chose a profession that will provide for all of our little man and his health needs. Lately he has been so great about giving me extra attention, and O how it helps!

-Sometimes I worry about the Dr.'s diagnosis...how correct is it? How can they be sure? What if it is a different type of skeletal dysplasia? My bi-monthly Dr. appts help with this, but there is always the question.

-I know this baby was supposed to come to Cody and I, and into our extended family. We have the most overwhelmingly supportive family who have been through struggles harder than I can even imagine. I know that he will be strengthened by each one of his grandparents, great-grandparnets, aunts, uncles, cousins, and so on. He is going to be so loved he will get sick of it!

-When am I going to feel you kick, or roll over, or whatever you are doing in me? WHEN!?!

-I feel so blessed to be entrusted with this baby in our home. I think about all of the blessings that he is going to bring to us. We are going to meet some AMAZING people. He is going to teach us about true perseverance. He is going to be the most amazing thing that ever happens to us, and I feel that every day!

I am sure that I will continue to have these questions for the next 18 weeks, probably the next 18 years! Hopefully they someday are all clear-cut to me though! Random post, sorry.

Smiling Baby!

We had our second appointment with Dr. R., our perinatologist. Stop holding your breath...it went wonderful! We were so happy/relieved that Baby W was still doing so well. His arms and legs are still short, but we don't care! We just want his torso to continue growing properly, and it is going down the right course now. In the picture above he was opening and closing his mouth! So funny! (His arms are across his chest, the little thing that looks like an arm isn't...don't worry, it's not quite that small!)

Okay, seriously, how cute is he?! (I know, I know, I am the mommy!) When the tech rolled over his face, both she and Dr. R. began laughing because of how big Baby W was smiling at us! I felt such a calming feeling, like he was saying, "Mom, Dad! STOP worrying about me!!!" It was so fun to see his handsome little smile.

I had all sorts of questions for Dr. R., and he was so patient with us. Here are some of the questions I asked, because I am sure that some of you have the same ones...

-Is there an increased chance of hydrocephalus(water on the brain) because of his skeletal dysplasia? No, he has just as much of a chance of this as any AH(average height) person.

-Will Baby W need any surgeries immediately after birth? As of right now, no. He is just achondroplasic, and will only require LOTS of testing when he is born. At his birth, there will be a Genetic Doctor who will assess him to all ends. Then we will go from there! Anyway, if it turns out that he is just achondroplasic, no surgeries right after birth! Woo-hoo!

-How do his arms and legs look? Very normal for achondroplasic babies, small but healthy. I was worried from his last ultrasound that he only had a femur bone, and was missing his tibia and fibia. (I know this sounds crazy, but it does happen in LP's. They simply have a femur bone with a foot.) Today we were able to see the femur, tibia and fibia bones and they look great! Also, at the last US, Baby W had his hands all curled up in a ball. Dr. R. had said that he really wanted to see his fingers stretch out in the next few visits to see him. Today the little man had his fingers intertwined across his chest...Good Job Buddy! He did just what the doctor wanted...spread those fingers out. We were especially excited for this because even Little People can play golf...and we are really counting on him to be the first LP in the PGA!

-Genetic testing...dun, dun, dun...do we need to do it? Now or after Baby W's arrival? Well, we CAN do it if we want after Baby W is born; but it does seem, um, silly. It is scientifically proven that Baby W's achondroplasia simply comes from a gene mutation, not from us. For more info on this, you can refer to this post.

-Will I go full term? Yes, as of now, I can plan on a full, 40 week delivery. That puts us still on June 23, Cody and I's 3rd anny!

-When will I feel him move? We are not sure. Dr. R. said that he would want me to feel him start rolling over in the next few weeks, but that is not a definite. I won't feel him kick or punch me like an AH(Average Height) baby, just the rolling and squirming, so this makes it take a little while longer.

-Should we be speaking with Pediatricians, etc? At our next visit we will get the names of a few pediatricians in the area who are familiar with skeletal dysplasia. I would like to meet with one soon after that so I can learn a little better how to prepare for any of Baby W's special needs. He will pretty much be treated like an AH baby, from what I can understand, but will need extra support of his head/back. From the little research that I have done it seems that some things can be damaging to his spine developing correctly, such as canvas seats with no real support and carrying backpacks and slings. I want to make sure that I am not buying things that will be harmful to my little dude!

Overall, Baby W looks wonderful. Right now his ribs are growing along with his organs and torso, so that indicates that Baby W's form of skeletal dysplasia is not lethal. We hope and pray that he continues down this path but know that whatever our Heavenly Father has in store for us is what we will take! We are so in love with this little guy. We can't thank you enough for all of your prayers on our behalf, by all means, keep them coming!

What is Achondroplasia?

Achondroplasia is a common, nonlethal form of skeletal dysplasia (dysplasia - not normal), or a genetic disorder of bone growth. Depending on who you ask, statistics say that one in 25,000 to one in 60,000 births will result in Achondroplasia. Achondroplasia is one of the oldest recorded birth defects, dating back to the Roman Empire. It is characterized by abnormal body proportions — affected individuals have arms and legs that are very short, while the torso is more nearly normal size, and in some cases individuals have larger heads due to "frontal bossing".

Before beginning to walk, a baby with achondroplasia often develops a small hump (kyphosis) on his lower back. This is due to poor muscle tone, and usually goes away after the child starts walking. Once walking, the child usually develops a markedly curved lower spine (lordosis or sway- back), and the lower legs often become bowed. The feet are generally short, broad and flat.

Achondroplasia is caused by an abnormal gene located on one of the chromosome 4 pair (humans have 23 pairs of chromosomes). In some cases, a child inheritsachondroplasia from a parent who also has the condition. If one parent has the condition and the other does not, there is a 50 percent chance that their child will be affected. If both parents have achondroplasia, there is a 50 percent chance that the child will inherit the condition, a 25 percent chance that the child will not have it, and a 25 percent chance that the child will inherit one abnormal gene from each parent and have severe skeletal abnormalities that lead to early death. A child who does not inherit the gene will be completely free of the condition, and cannot pass it on to his or her own children.In more than 80 percent of cases, however, achondroplasia is not inherited but results from a new mutation (change) that occurred in the egg or sperm cell that formed the embryo. The parents of children with achondroplasia resulting from new mutations are usually normal-sized. The gene that causes this disorder was only discovered in 1994, so much research is still being done to learn more about it. The gene is one of a family of genes that makes proteins called fibroblast growth factor receptors. Scientists have recently linked these genes with several skeletal disorders.The gene that causes this disorder was discovered in 1994, a mere 13 years ago. While scientists are eagerly studying these mutations, there is much controversy from society at the outcome of the studies.

A few notes: Intelligence is entirely normal in people with achondroplasia. The term "midget" is considered offensive in this day and age. The acceptable terms for a person with any type of dwarfism are person with dwarfism, little person, LP, and person of short stature.

*I found this on another families blog, and I think it explains the condition quite well*

The Scientific Side of Things...Cody Style

What can a bachelor’s degree in biology provide? Well, not enough to make the scientific jargon over the past few weeks comprehensible. It is one thing to interpret the information myself, but relaying that information to my wife can at times be difficult. So for those who may be interested in seeing dwarfism from the scientific view, I attempt to explain it for everyone.

The Rundown

• Each of us has 46 chromosomes, which are actually set up in pairs of two. We receive 23 from mom and 23 from dad. Twenty-two of those pairs are known as autosomes (defined for being non-sex chromosomes, which will be important to know for later). The last pair determines just that, whether we will be a male or a female and are therefore named as such, sex chromosomes. If your confused, obtain two pieces of string, thread, etc. Lay them out and cross one of the other forming an X. Loop the string lying over the top under like your making a pretzel. At this point, repeat the same step with the two strings above the swirl you already have to form a knot. You should have created something with a large knot with four appendages stemming from that knot. This is generally what a chromosome looks like, below.
• Each chromosome contains DNA, which acts as our genetic blueprint. Each DNA molecule can be composed of 10,000 to 1,000,000,000 nucleotides. Now imagine that you were to take a 0.5 mm mechanical pencil and write a repeating code over the whole chromosome you just created. Our DNA works with four repeating nucleotides (C,G,A,T), so as you write your blueprint for your chromosome keep it to four letters as that will relay all of the necessary information for the body. But remember, it is just a blueprint.
• We need a way to take our blueprint and somehow make it functional. This is known as the central dogma. Suffice it to say, several components are involved in reading the blueprint to produce a messenger RNA, which carries the information to another processing center that reads that information and ultimately makes a protein. Translation…the DNA is read (similar to the Leapfrog Tag Reading System below) and that information is then placed into, let us say, an easy bake oven. The oven produces a protein which has functional capabilities to move throughout the body and do work.
• Now, if rewind a few paragraphs and become a little more specific with the information carried by the chromosome, segments of the repeating code can be called genes, because the have a specific destination or function as to what they will be. Just think back to the blueprint, we will contain specific information for each part of the building. Each gene carries blueprints with specific instructions for making proteins. Those proteins then act as the body’s building blocks. In our case, this specific protein called FGFR3 (Fibroblast Growth Factor Receptor 3) has mutated by at least one nucleotide base. Translation…the four lettered code you put on your own homemade chromosome somehow becomes changed which means it will be read differently and ultimately will come out as something different from your easy bake oven.
• The FGFR3, from what scientists believe, becomes overactive leading to altered development of the long bones, which is what has happened in Baby W’s case.