May 9, 2008

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

7 comments:

sea star said...

Glad to see you have a blog up and running. What an amazing support system you have with the NNFD. Love and prayers for your sweet family, I'm here if you ever need anything.

Pete Wilson said...

Leah, please know you are in my prayers. If there is anything we can do don't hesitate to ask!

Anonymous said...

I understand all you are feeling and God is with you every step of the way even though sometimes it feels like he isn't. There is a reason he put's us through these trials and I learned alot through all of mine. My prayers and thoughts are with you. I believe you guys have made the right decision. Even though you know what the results are going to be there is nothing like the feeling you will feel when you lay eyes on your son for the first time. He will always been in your heart and always be part of your lives no matter what happens you will never forget the experience God gave you no matter how short or how long he is here on earth he will always be your son forever. God Bless Angela Coffey

Anonymous said...

This blog page looks great. Heidi and I will keep your family in our thoughts.

Mike S.

Anonymous said...

Dear Leah & Ryan -

I pray that you continue to be strong for Christian as your faith has gotten you this far. He is truly a stong little guy. Both you and Ryan are the hero's.

Barbara Kornek

Jahna said...

Leah, Ryan...
Thank you again for sharing Christian....he is so loved...and touching so many lives....J.

Sally said...

I am a blog stalker, I apologize, I hope you don't think that is rude. . .I know you don't know me and you are going thru a journey so very personal, But I came across your blog from a link, and have read your blog from most recent to the very begining - your story amazes me and brings tears to my eyes. Your baby boy is beautiful...and a beautiful angel he is! God bless you all. . .