Good Morning Son

Good Morning Son,

Mom said you were kicking like crazy this morning, but when I went to feel you you stopped. I told your mom it was my calming touch that settles you down...she giggled. You have made it past the 7th month mark. Most babies with T18 don't make it this far or they slow down their growth. You are still going strong and seem to be growing like you should...way to go champ! Your mom and I got to see you in 3D for the first time, you have her nose. I'm glad it's not mine. When you see me you'll know why. Friend's say you have my pouty lips. I'm not so sure that is a good thing, but the girls seem to think so.

Christian, I've been building a hot rod in the garage hoping you'll be able to some day help finish it. Mom thinks I'm going through some kind of midlife crises. I told her it was just a hobbie, but really it's a way for me to relax. Some day I hope to share that feeling with you.

Love you Son,

DAD

Another Day...another Doctor's visit

Yesterday, I had another visit with my OB/GYN. Now that my appointments are scheduled every 2 weeks AND I have regularly scheduled ultrasounds with my "high risk" specialists, it seems I am always at the doctor's office.

I had my glucose test done yesterday which is a routine test given to all pregnant women to check blood sugar levels. Okay, I totally get that it's a necessary test... But let me tell you, it was not pleasant. Drinking an orange flavored VERY sugary drink first thing in the morning was definitely NOT my idea of the breakfast of champions...especially since I had to fast prior to the test and my stomach was empty and growling. Christian seemed to like the drink though as he was moving around in my belly like he was in a bounce house.

I made up for it, however, because as soon as I was done with my doctor's appointment, I ate a breakfast fit enough for a lumberjack... scrambled eggs, french toast, sausage, fruit, Milano cookies (okay, I snuck those in)... yeah, you get the idea...I feasted as if I hadn't eaten in days! (Pregnant ladies can do that, you know!) :o) Afterward, both Christian and I were in sync because I was definitely bouncing around too!

It was nice to visit with my doctor though because I think I finally asked some good questions. A couple of days ago I met a really great lady who contacted me after receiving an alert about blogs pertaining to "Trisomy". She has a daughter, Mallorie, who is 16 MONTHS OLD. Please stop here and really grasp this... Little Mallorie is alive at 16 months old... She is a MIRACLE!

Ryan and I consider her a true beacon of HOPE! And it's a beautiful thing! All we've read prior to meeting her are grim statistics about Trisomy 18 and heartbreaking stories of pain and loss. Seeing a picture of little Mallorie has reassured Ryan and I that we have certainly made the right decision to stick by our son. The endearing way my new friend, Connie, describes her little Mallorie fills me with so much hope and anticipation to meet my own son. I just can't wait until he is born!

Anyway, my correspondence with Connie has been so valuable because, as a survivor, she has been able to offer some insight on what we might expect should we be lucky enough to have our son with us for longer than a brief moment. Things like caring for my son and personal choices while at the hospital during the delivery are things I never allowed myself to hope for because I didn't think I would have that much time with him.

I had a brief conversation once with a parent who lost their child to T18 and afterwards I broke down and was depressed for days. Imagine carrying a child inside you who moves constantly... and having conversations about making funeral arrangements and memorial services...The sadness is so great. No hope...just dread at having to prepare for the unimaginable. It is pain unlike anything I've ever experienced. And yet this is what my future will eventually hold... BUT NOT RIGHT NOW! My son is ALIVE... and I am committed, now more than ever, to celebrating his LIFE. Ryan and I are truly living in the moment. Thank you Mallorie!

I realize more than ever that Ryan and I have a lot of work ahead of us to prepare for Christian's arrival! We're not banking on false hope... we only want to be prepared just in case we're blessed with a miracle like Mallorie. And so I started a dialog with my doctor about choices I thought would never be available to me. Maybe this doesn't make sense, but I felt like I was finally moving forward instead of spinning my wheels and waiting for things to happen to us. It feels great!

People, I'm learning this as I go and I will be the first to admit, I'm overwhelmed and CLUELESS about what is to come. Ryan and I don't have children. I don't know how to change a diaper, the fragility of babies scares the heck out of me, the smell of funky diapers and "spit up" will surely set my gag reflects on high alert, and I think I'm lactose intolerant because the smell of milk really creeps me out...But I'm okay with all of that. I just want my son. Ryan and I have been trying to have kids for years. We know what kind of parents we want to be... we "parent" our dogs who are our babies...but it's not the same. I feel at such a disadvantage because my pregnancy encompasses all the joy that a new mother should experience. But, it's also filled with despair caused by being told my son has a fatal genetic defect. It's a lot to deal with. Ry and I thought we would have a basketball team by now... we thought it would easy and it's been anything but that.

And now I have a new friend who has reached out to me with HOPE. I am forever grateful...Connie, Thank You. You are blessing and a friend!

It's been over a month...

Well, it's been over a month since my last posting and I wanted to update you on the latest news about our son, Christian.

Truthfully, my writing has been slow in coming because I've had trouble putting my thoughts and feelings into words. I honestly thought writing about our situation would get much easier as time went on, but it hasn't. It is such a struggle. Each time I sit down to write an update, I read over what I've previously written and a deep sadness comes over me with the reminder that this is my reality. I've tried to erase the truth from my mind that Christian has a terminal defect and his life here on earth will be fleeting at best. I would do anything, ANYTHING to be able to keep my son here with me and my family, but I know that it's not meant to be. How I wish things could be different.

This is such an emotional journey for me. And, although my writing has allowed me to channel some of my grief into a more positive outlet by sharing our son with the world, there are days when I just feel so broken. I pray constantly for the strength to endure God's plan.

I do try to stay positive and focused on our commitment to Christian. Each day, I thank God for giving me this time with my son. I have found more joy in the little things that occur than I thought would ever be possible. Even now as a write, Christian is happily kicking away in my belly and I am so happy! His movements are a constant reminder to me that my precious son is growing and will, hopefully, be strong enough to meet his parents one day. Ryan and I look forward to that day with such joyful anticipation!

Let me go back a few weeks to share with you a few special events that have transpired to this date.

First of all, I experienced my very first "Mother's Day"! May 11th was such a special day for me. Ryan surprised me early in the morning with a Mother's Day card. I can't tell you how happy I was to get it... During the several days leading up to that Sunday, I couldn't help thinking to myself that this may very well be my first and last Mother's Day celebration. I woke up that morning feeling so sad...almost to the point of tears. Ryan also handed me a little blue and white Tiffany's box and quietly said, "Happy Mother's Day". I just stared at him with gratitude for thinking of me as a mother already even though Christian isn't born yet. It was such a sweet moment and it meant the world to me. Ryan gave me a beautiful charm...it was a lock with the initial "C" in it. It's truly a gift that I will treasure forever.

I spent many hours that day thinking about what it means to be a Mother. It's a title that has so many responsibilities attached to it and I prayed so hard for God to let me enjoy the privilege of being Christian's mom...even for just a little while, so that I could experience a few of those things with my son. To be able to feed him, bathe him, comfort him when he cries...would be experiences that I would cherish for the rest of my life.

It was a pensive day...definitely bittersweet... and I wouldn't have traded the experience for anything.

On May 14th, Ryan was deployed across the state to help fight the brush fires that were burning out of control on East coast. It was tough to see him go because Christian's next ultrasound was scheduled for the following day and he would not be there.

I was terrified of going to this appointment alone because I was sure I would get news that Christian's health was deteriorating and I didn't think I would be strong enough to handle it on my own. Fortunately, my dear friend, Jahna, came to my rescue and went with me.

We spent about 1.5 hours watching Christian through the ultrasound and were amazed by what we saw. First of all, let me say that my son was completely enamored with his feet! He kept grabbing his foot and putting it to his mouth or over his head. He was so active the entire time...twisting and turning and showing us how limber he was. It was simply adorable to watch. He also kept pointing his index finger as if to convey to us, "I'm number ONE!" We laughed so hard just watching his little antics on the monitor. I am totally in love with his personality and spunk... and I was thrilled to share the experience with Jahna.

More importantly, we learned on this day that Christian was not developing any additional problems as is common with Trisomy 18 babies. His size and weight measurements were still normal for his gestational age of 24 weeks. In fact, he measured just shy of 12" and weighed around 1.5 lbs. All, but one, of the cysts on his brain had disappeared and all of his organs seemed to be developing normally. Even his heart defect seemed better. The overriding aorta seems to not be as severe as originally thought. It's still overriding, but only very slightly.

To me, all these things combined give me so much hope that our son will be strong enough to be born. I know there are no guarantees, especially with T18, but this was the best news we could possibly hope to receive.

Although it was such a great day, it was slightly dampened by the fact that Ryan was not with me to share in the joy. Of course, I assured him afterwards that Christian was doing well and relayed everything that we learned that day.

Ryan finally returned home the following Monday a lot smellier and perhaps a little thinner despite being fed 3 square meals a day. Having our family back together and our spirits considerably lifted by our last ultrasound made for a lot of laughing and silliness in the Paige household during the following days. In fact, Ryan's mood was elevated even higher when he felt Christian give me nice karate kick in the ribs on Saturday. Our son's kicks and movements are getting stronger and much easier to feel. I can't tell you why this makes us so proud... maybe beause it shows us how strong he is getting and that's a very, very good thing.

At 26 weeks, I FINALLY went shopping for some much needed maternity clothes. I never thought I would ever be a fan of elastic waistbands...but let me tell you...they are a GODSEND! I didn't think I would be able to embrace my pregnant look in public after I found out Christian had Trisomy 18. And I honestly didn't know how I would react to people questioning me about my "baby bump" and the curiosity that naturally arises when people see a pregnant woman. But I LOVE, LOVE, LOVE looking pregnant! Even something as small as finally being able to wear maternity clothes has been such wonderful experience.

Finally, on June 12th, we had another scheduled ultrasound. Ryan had been anxious for this appointment because it had been over a month since he last saw Christian. It was a very special ultrasound because our technician was able to let us view it in 3D. Talk about being a magical experience! We spent another 1.5 hours with our son and we actually got see what he looks like! HE HAS MY NOSE!!! He's growing hair...he still loves his feet... we got to see him breathing. We even saw him sucking his thumb! And I swear he blew us a kiss..or at least he puckered his lips as if to do so. Believe me when I tell you that he is truly the most beautiful and perfect little boy!

Even more incredible is that he still continues to grow and develop normally . Now, ALL the cysts are gone on his brain and his organs are still continuing to function properly. He doesn't have clenched hands, clubbed feet, or a cleft palate. And he is now 14" long and weighs 2.4 lbs...right on target with his gestational age. Our son is such an amazing little boy!


Many people have told us they are praying for a miracle and we feel we have certainly received one. Christian continues to get stronger despite having Trisomy 18. We are so optimistic at this point that he will definitely be strong enough to be born!

Your many prayers, emails, and good wishes for our family have kept our family strong during these difficult weeks and we are so grateful to each and everyone of you for letting us know that you are thinking of us. I hope this latest update has lifted your spirits as it has ours. Please know that your prayers are working... and we ask you to please continue to keep Christian in your thoughts and prayers. He is doing so well right now and we live only to be able to hold him and tell him we love him!

Letter from Dad

Son,
Have I told you today how much I love you? You bring to your mom and I such joy, with your antics: kicking, tumbling, and an occasional jab to mom's ribs. I love feeling you move around in mom's belly. You make me smile knowing that you are so active. I'm sorry I missed your last ultra sound, but I had to fight some brush fires, which took me away from home for awhile. I miss you when I'm gone, but I do think of you. Actually, sometimes you are all I think about. Your now about 15 inches long and about 2lbs. Way to go champ! Can't wait to hold you!

Hang in there...love,
Dad

Dear Little Christian Dale Paige (I love your name),
This is Grandma 'Mina" saying hello & I love you dear grandson. Your mama says you did well in your ultrasound today, grabing your toes & all your hand signals. I'm sooooo proud of you! You know you have the most loving parents in the world and I am soooo proud of them, too. I can't wait to see you. I know you will have dark hair & eyes like your mommy & daddy.
Many, many people are praying for you and them and for a miracle. We are so blessed to have such support and love. You are coming into a strong, loving family that will take wonderful care of you and protect you. You also have quite a special family waiting for you in heaven who will take good care of you. Auntie Beth, Great Grandpa Rocky, Grandpa Paige, Great Grandpa Bob, Aunt Dolores, Uncle Bill and the Skidmores. They are all such special people and we miss them so.
I pray that we will have some time with you so you can feel our love first hand.
Keep growing little one. We're patiently waiting for your arrival with our arms and hearts wide open.
All my love,
Grandma 'Mina'
P.S. I am a nurse & respiratory therapist and will help mommy and daddy take good care or you. That's what I do!

Dear Christian, It's your dad...

Son..., I have been wanting to say that word all my life. You are a blessing to your mother and me. I felt you kicking inside mom's belly the other day and I'm so looking forward to the day when I can hold you. Your mother and I have been waiting a long time to have someone special to give our love to...so be prepared to get alot of loving...we have been saving it up.

Son, I hope you like football...your mom is a big fan...and you are expected to arrive during the preseason. If the Colts are playing I'm sure I'll be the one changing your diaper.
They tell me your ears are developing and you can hear us...so I'll explain the the game one night so your not confused.

Son, Don't be alarmed when some nights you might not hear my voice or feel my hand when you kick. I am thinking of you. I'm just at work, caring for other families that need my help. I am a fire fighter like my dad (your grandfather) and his dad (your great grandfather). You have been named after me like I was named after them.

Son, Unlike your great grandfather teaching his son, and your grandfather teaching his son, your dad is being taught by you. God has blessed me with a teacher. A unborn child that is teaching me more about life than anyone that has lived before him.

Thank you Christian,

Love Dad

Letters to Christian

Dear Son,

It's morning and I'm working on my daily routine... juice, vitamins, and now breakfast. I have a cranberry/blueberry muffin perched on my belly as I'm writing. I'm sorry you didn't get your usual cinnamon Pop-Tart this morning... it's your father's fault really. It's always a mad dash to see who gets the last one in the box...And well, as you already know...you're having a muffin. I promise, I'll work on that.

I do have to thank you ....having a portable table where ever I go has been pretty convenient. Although it's a bit frustrating not being able to see my feet...it seems I stub my toes pretty often these days. Another something I'll have to work on..

It's been a few days since I published the beginning of your story...I hope you will be proud of me. It was pretty tough getting through some of the events that have already taken place, but in all honesty, I feel much better. I know you've felt my sadness and I'm sorry for that, Son. I'm trying to get better for you. I promise, there will only be lots of smiles, hugs, and kisses on your birthday. I can't wait!

Have I told you lately that I think you're an amazing little boy?? I love you so much. Even though I'm your mom and I'm carrying you in my belly, I think it's you who is really carrying the load. Just knowing you're there happily floating around in your little water bath makes me want to get out of bed in morning. When I don't feel like eating...it's you who reminds me that I have to make decisions for the both of us... You make me laugh every time I feel you kick... and you made your father's day on Saturday when he felt you kick for the very first time... You are already so strong... and I am so proud of you.

You are also changing lives... Your Papa, Auntie Jahna, Cody and Ricci gave blood on your behalf last Thursday. Your daddy set a record as he was finished giving blood in just over 10 minutes... I think it's because he has such a Big Heart. Also, it was a HUGE milestone for the Cameron clan...you see, Son, it was the FIRST time any of them had ever given blood. And it was because of you! You are already responsible for helping to save lives... No mother could ever be more proud. I love you.

Finally, in case you were wondering what all the ruckus was about the other night... Your father was trying to read, "Horton Hears a Who", to you and I couldn't stop laughing. The book reminds us that, 'A person's a person. No matter how small!" We just LOVE that message.

Your friends have dropped off several Dr. Suess books for us to read to you...You are such a lucky boy! Already Loved by so many! Unfortunately, your dad and I are out of practice reading these types of books and we stumble over the words to the point of giggles. He almost gave up and started trying to explain how to build a car engine to you instead...but I made him charge on.

We're doing our best, Son... and I promise we will only get better with more practice...

Well, that's all for now... I just want to tell you, I love you. Keep kicking and letting me know you are there... It's truly the bright spot in my day.

Love, Mom...

Our Introduction

Well, here we are at the very beginning of our story...Christian's story. My husband and I already know how this story will end...but I'll tell you more about that as we go along. I guess it would be better to start by telling you that I'm 24 weeks pregnant with my first child, Christian Dale Paige.

This initial post is pretty long because I wanted to give you an overview of what has transpired over the last several months leading up to this day. You see, 2 1/2 weeks ago, my son was diagnosed as having Trisomy 18 - a rare and fatal genetic defect. I'm carrying this precious life...just below my heart... knowing that he is going to die.

My husband and I have made the decision to choose life...regardless of how little time we have with him...over terminating this beautiful gift from God as some of our doctors have recommended. It's a tough road and we are so sad. But we wanted to share our story... because regardless of how long our son has here on earth... He matters... He's going to die...but still, he MATTERS...

Already, we see the enormous impact our dear Christian has had on the lives of our friends and family. My husband and I have received so much love and support during this time...because everyone agrees...our son matters.

When I mentioned earlier that we knew how Christian's story will end...I meant that we know TI8 or Edwards' Syndrome (as it is also known by) is fatal... "Incompatible with Life" is the medical term... such a cold term for a life which continues to grow. What we don't know and what we are committed to is Christian's journey to that point. Sure, we will shed many tears along the way...but Ryan and I will grow as individuals, become stronger in our marriage, and truly learn what it means to appreciate the little things in life.

We are excited to celebrate Christian's LIFE...

"Life is not measured by the number of breaths we take, but by the moments that take our breath away." ~ Unknown

Christian's journey began on December 15, 2007. This is the day 4 fertilized embryos were "launched" into my uterus. My husband, Ryan, and I have tried unsuccessfully for years to conceive children on our own. So, with the help of a fertility specialist we placed all of our hopes for children on these 4 little embryos.

From the beginning, we knew our chances for children would be slim at best. Our doctor gave us a 30% chance of becoming pregnant. But it was a chance we wanted to take. In fact, we thought with odds that good, we just had to go for it... What IF one of those little guys took!

By Dec. 22nd, I started peeing on a pregnancy stick. I was so nervous and scared... but in a small way, I just KNEW I was pregnant. On the first test, the "pregnant" line was so faint...like maybe my brain was just signaling to my eyes what I wanted so desperately see. Of course, I showed the stick to Ryan and he said, "well, it kind of looks positive"... not so convincingly. It took 2 more days and 3 more test sticks for us to finally believe our dreams for a family might come true. We were so ecstatic! We announced the results to our entire family during our Christmas Eve celebration. We just couldn't wait for the "official" results via blood test from our doctor. Although we knew it was risky to make such an announcement, we also knew everyone would be so happy for us. It would be the best Christmas present ever. I miss the happiness of those first days so much...

By Dec. 26th, we got our official blood test from the doctor and, of course, it confirmed what Ryan and I had already started to tell the world... WE ARE PREGNANT... AT LAST!

Because fertility treatments are so exact with regard to timing, it was nice to be able to get information right away about our pregnancy. At our stage, most people don't even know they are pregnant...and probably wouldn't know for several weeks. But, by the time the New Year rolled around, we were already scheduled for our first ultrasound.

Jan. 7th was the first day we actually got to see our little ones growing. We could hardly believe our eyes when we saw 2 gestational sacs... TWINS! Life was so good and our many, many prayers for a family were being answered. Although, we saw the 2 sacs, we were a little alarmed when 1 of them was considerably smaller than the other... about a quarter of the size in fact. And no heartbeats.. We were told it was too early to see the heartbeat and another ultrasound was scheduled for the following week...5.5 weeks.. hopefully, we'd see these new lives forming...

By the following week, we were delighted to see that both sacs were now almost the same size but still no heartbeats... I remember thinking that the possibility of a miscarriage was very real... and I just felt so scared...it's a terrible feeling and we felt it for the entire week until our next scheduled ultrasound at 6.5 weeks.

Our nerves were absolutely frayed by this point. We kept praying for God to help jump start these little hearts so we could see life growing at last. That week seemed to drag on forever. But once we got to the doctor's office, all the worry seemed to vanish within minutes. We got TWO heartbeats...and they were strong! Through tears of joy, Ryan and I held hands and whispered how much we loved each other, totally oblivious to the fact we had several people in the room with us. We had truly been blessed.

I think we made at least 20 phone calls between our doctor's office and home that day...just excited about the news that we were having twins. Our faces hurt from all the smiling we did that day. It was just a great day all around.

At 8.5 weeks, we went in for our final ultrasound with our fertility doctor. It was a milestone in our pregnancy because we were actually being released to find a regular OB/GYN. Regardless, of what mountain we felt like we had moved to get pregnant, we were going to be like every other blessed couple who experiences a normal pregnancy.

I was so naive those first weeks...I thought the toughest obstacle we would have to overcome was actually getting pregnant. And since we obviously tackled that with few problems, I believed my pregnancy would be smooth sailing from then on. How I was so wrong.

Ryan's mom, Patti, was also with us during this ultrasound and we were so happy to share the experience. After a couple minutes on the table though, we knew something was wrong. We only had one heartbeat. One of our babies had died. At first, we were all stunned... then sadness started creeping in... we were already a family and had become so attached to our little ones in the 2 weeks since we first learned of our twins.

It's hard to totally describe how I felt that day... On one hand, I was relieved and happy to know that we still had one viable heartbeat but, I just couldn't let myself be happy because one of our babies had died. I felt guilty about being relieved that I still had the one baby. Also, there was the eventual realization that something could go wrong, something HAD gone wrong in my pregnancy... Fear was something I would get used to feeling from that day forward...

After finally embracing the loss of Baby "A", I focused my energy on Baby "B"... Of course, I felt very blessed and thankful that the Lord had given us this child. I knew that whatever God had planned for us, everything was as it should be and Ryan and I would have to hold on tight for the ride of our lives.

Actually, with the exception of losing Baby "A", my first trimester went smoothly. I had no morning sickness, no usual pregnancy trials and tribulations, and I was glad. It was at about this time we learned that Ryan's sister, Holly, was also pregnant as well as very dear friends of ours in Chicago, John and Mylinda. It was such an exciting time for the Paige family. So many people pregnant at the same time... Every time Ryan and I locked eyes no matter where we were or what we were doing, we would just giggle like 2 kids....we were so happy.

Even so, there was still that lingering fear in me...that I was not in the clear. Apparently, a miscarriage was still a real possibility until around 14 weeks. I counted the days with baited breathe...just hoping to get to that milestone before I truly allowed myself to feel comfortable and celebrate my pregnancy.

Feb. 25th was our first appointment with our regular OB/GYN.... Again, Ryan's mom came with us and we got to see Baby "B" through yet another ultrasound... How we lived for those brief glimpses of the new life forming inside of me. It was during this time I started thinking Baby "B" was really a baby boy... mostly because at this ultrasound we got to see our future football star throwing his little arm over head as if he was throwing a winning touchdown pass. We were absolutely amazed by how active our little baby was! It would be another month before we learned what the sex would be.

On Mar. 25th, I was sent to another group of doctors which handled high risk pregnancies. I'm considered high risk because, at my age (40 yrs old), there is a greater possibility for problems... chromosomal abnormalities and genetic defects, specifically. We met with a genetic counselor who went over the statistics, but, because they were so remote, I truly believed we had nothing to worry about. I had blood drawn earlier in my pregnancy to check for any kind of problems and so far I was in the clear. In fact, I remember the counselor telling me about Trisomy 21 - Down's Syndrome, and then 2 other Trisomy's...18 and 13. She barely touched on the last 2 Trisomy's because they were so rare.. I hardly gave it any notice.

I had an ultrasound that same day which measured all the key parts of our baby and everything looked good... normal and healthy. However, at the time, our technician couldn't get a good view our baby's heart...mainly because our baby was so active...twisting and turning every time we tried to zero in on the heart. We were told that we would have to come back in a few weeks to get the view they were looking for... we had no idea there was cause for any concern.

One thing we did learn on this day was that Baby "B" was actually a baby BOY... TOTAL ELATION. Of course, we already knew this would the case... mainly because Ryan and I could only agree on a boy's name! Christian Dale Paige. We love the name Christian and Ryan's middle name is also Dale...so, it was perfect! Personally, I had a feeling I was having a boy...because so far in my pregnancy, I had experienced the WORST gas of my life... I was sure it was something that could only be brought on by a boy. :o) Ryan was so proud... he couldn't wait to tell the guys at the fire station that he was having a son. Everything was perfect and we felt so very blessed.

Around the beginning of April, we got a call from my OB/GYN's office that would change our lives forever... one of the triple marker screens (a blood test) I took earlier in my pregnancy finally came back and it was positive for Trisomy 18. I remember that day so vividly. I was at the fire station visiting Ryan on Shift. We were sitting across from one another at a picnic table when I received the call. In an instant, I could barely breathe. My legs felt weak and I felt pain come over me like I'd never felt in my entire life. I barely got through the call when I collapsed into Ryan's arms trying to tell him what our doctor had just relayed to me... I could only speak in convulsing breaths. I kept doubling over and repeating Trisomy 18....What does that mean...what does that mean??!! Of course, my actions scared Ryan to death...he'd never seen me that upset before.

I drove home immediately and began searching the Internet for information about Trisomy 18. I only remembered that the genetic counselor said it was so rare that we barely covered the defect in our office meeting a couple weeks earlier. Of course, when I looked it up, I could hardly believe what I read... NOTHING was positive ... our baby would die from this genetic disorder...it would only be a matter of time.

Fortunately for me, Ryan was able to get someone to cover the rest of his 24 hour shift at the fire station and he arrived home about an hour later. He had done some research after I left and made additional calls to our doctor's office to go over the information that had been conveyed to me earlier.

Because of his job as a firefighter, he constantly deals with many different stressful situations...many of them life and death. I think his experiences truly helped him with his ability to not panic during this time. Ryan is my hero in every sense of the word... he's the calm in the eye of a storm... and my best friend when I need a shoulder to lean on.

Calmly, he explained that this was only a marker...and there is always a ridiculously high percentage of false positives with these triple marker screens. He said we had to wait until the doctors could get a better view of Christian's heart. Also, we needed to see if additional visual markers would show up on our upcoming ultrasound before assuming the worst. He also reminded me that everything looked great on our baby so far...Christian showed no other visual signs of Trisomy 18 at our last ultrasound.

Apparently, babies with T18 have so many deformities... clenched hands, clubbed feet, as well as a laundry list of organ deformities that just weren't present when we last saw Christian. Through a blur of tears, I started to actually hear what he was saying to me and I felt the grip of fear loosening around my heart. I would have to wait 2 1/2 more weeks before we would get more information.

Over the next few days, we spent many hours scouring the Internet for anything related to T18, we shared many conversations about how we were feeling and really kept the lines of communication open. My emotions were so raw... I just kept repeating everything Ryan said... Our baby has none of the markers that are typically present in a T18 baby. This must definitely be a false positive.

On April 17th, we went into our ultrasound appointment pretty much convinced that the marker screen was just another false positive... Surprisingly, our spirits were quite high and we expected to hear only good news about Christian's heart.

Unfortunately, that feeling was short lived.

We learned that Christian had a heart defect called Tetrology of Fallot....basically he had an over-riding aorta and a hole in his heart. Our technician told us that is was a fairly common heart defect and that it was definitely operable. In addition to his heart defect, she found some fluid on his brain. She said typically the fluid goes away around 24 weeks and that she sees it quite often during ultrasound scans. But we also knew from our research on the Internet that many babies (about 90%) with genetic defects often have heart problems. And we also knew that the fluid on the brain was another visual marker for T18. Our hearts sunk.

At that point, we were counseled about having an amniocentesis done to rule out T18 or any other genetic disorder and we had to seriously consider it. Previously, we had been counseled on the risks of this type of test and we were pretty adamant about causing any further risk to my pregnancy by having such a test performed. But in light of what we had just learned, we really saw no choice. The amnio was done the very same day. I remember laying on the table and praying...begging really... for God to please intervene and help my baby.

Before we left, our doctor scheduled an appointment with a leading pediatric cardiologist for April 29th to discuss future surgical options we would need to consider for Christian. I was numb by what was happening... I couldn't believe it. We were told we would have the results by Monday or Tuesday of the following week... Another long wait.

We kept praying, "Lord, just please, please let it only be a heart defect and not the other. We can deal with that... we'll give Christian the best possible care... Just please give us some Hope".

We were actually PRAYING for a heart defect... no longer did we have the choice of hoping for a healthy baby... "Just Please Lord, please, please don't let it be Trisomy 18." No parent should have to wish for such a thing. ever.

On Sunday, one of Ryan's firefighter buddies, Hank, came over... it seemed he had something he wanted to tell Ryan in person. Of course, our news had already begun traveling throughout the fire department and many people let us know that they were praying for our family and offering support. Hank told us that he had made some calls and several of the guys volunteered their time to cover Ryan's shift on Monday so that he could be home with me if we got the results from our amnio. We were so overcome with gratitude! These guys work 24 hour shifts...most have families... and they were willing to give up their precious time off to help us out!

Words cannot describe how completely humbled we were by the outpouring of support. Just knowing people were thinking about us and cared about what happening to us really has meant so much. Thank you North Naples Fire District. We love you guys!

By the time Monday arrived, our spirits were considerably lifted... mostly due to our friends just being there for us. I had a doctor appointment with my regular OB/GYN and updated him on the last ultrasound and subsequent amnio test. We discussed the heart defect and fluid on the brain and he told us to be positive. He said these things could just be coincidental of each other. The likelihood of having T18 was 1:1,000,000... such great odds!

How could we possibly be the ONE in a million.

Our spirits were the highest they had been since learning of the possibility of T18. By 4:00 p.m., we knew that it wasn't likely we would receive the results from the amnio that day so Ryan went back to work to complete his shift and give his buddies the much needed time off they deserved.

I forgot to mention that during these last couple of weeks, I'd been dealing with a pretty bad cold. Ryan brought it home from work one day... and it just lingered on. I'd been constantly coughing and hacking for days... feeling pretty lousy on top of feeling LOUSY if you know what I mean.

Well anyway, for the past several days, my ribs were hurting considerably, and it finally got the best of me that evening. I could barely breathe, much less move. I finally broke down and called Ryan at the station at 5 a.m. and told him I thought I was dying. He asked me if I could hold on until he got home at 8 a.m. and I told him I thought I could do that... I was wrong. I managed to get myself in the car...and drive to the station around 5:30 a.m. Ryan ended up taking me to the emergency room where we learned that due to all the coughing and hacking I'd been struggling with, I managed to fracture a rib.

Just my luck, right?! I spent nearly 4 hours in the emergency room where, after much needed convincing by the doctors, I allowed them to administer a couple of doses of morphine to help ease my pain. We arrived home shortly after 9:30 a.m.

Because I'd been so sick and I'd been given a dose of morphine, my blood pressure dropped pretty rapidly. As soon as I opened the car door, I passed out in our driveway... Poor Ryan! Here he was trying to revive me while I lay spread out on the concrete drive. Have I told you that Ryan is my hero? He didn't panic at all! After several moments, he managed to get me in the house where he propped me on the sofa and administered care to get my blood pressure back to normal.

I had just begun to feel better, when the call came in. We missed the first call because Ryan was too busy trying to get me off our driveway.

Ryan answered the phone and I tried to understand the conversation through his grunts and "um hmms". Finally, he said out loud, "...so it's positive." It seemed like we just weren't catching any breaks! Despite my brain being fuzzy from the morphine and the pain I felt from my cracked rib... I had just enough in me to take the phone from Ryan and talk with the doctor. I asked her if there was any hope that we might have gotten a false positive and she assured me that these tests were 99.9% accurate. She said we needed to take this day to cry and grieve for our baby. Then, we needed to make some decisions... and we needed to make them fairly quickly. I knew what she meant by that... She wanted us to terminate our child. Our beautiful child who we'd watched through numerous ultrasounds...our feisty little boy who was so active..doing summersaults in my belly... She wanted us to end his life.

It was as if his life ceased to matter now that it was confirmed he had Trisomy 18 ~ Incompatible with Life.

We hung up the phone and just melted into tears. So much hope and so many dreams just completed shattered. Neither one of us moved very much for 2 days. We slept and cried often during that time. Truly feeling like we were in the worst nightmare.

Finally, we started thinking about what our options would be. Definitely, we agreed terminating the pregnancy was NOT an option. We absolutely love our son... Have from the first moment we saw his little heart beating. We realize because we still have a few months before my due date, it would be extremely difficult on us emotionally. But it doesn't matter... we are determined to stick by our son through this journey.

So this is where we invite you to join us. I've caught you up on everything that has transpired, thusfar. We don't know what God has in store of us...all three of us.. But we do know HE has a plan.

It is our hope that Christian will live to see his birthday. It is mine and Ryan's only hope to be able to hold our son and tell him we love him while he still has breath in his lungs.

From this point forward, I'll be able to update weekly... with MUCH shorter posts. Ryan and I ask you to please keep all three of us in your prayers. We are really struggling these days...but having our family and friends close to us has really helped.

With Love,

Leah Paige

If you would like to email us, we would love to hear from you at lpnaples@comcast.net or rpaige2004@comcast.net. Or if you would like to write our address is:

Ryan and Leah Paige

830 93rd Avenue North

Naples, FL 34108