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.