June 16, 2008

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!


Anonymous said...

Your strength, love for your son and prayers all around you will all help the three of you on this incredible journey - my love and best wishes are with you all Rachel

Cathy said...

Leah, I have just come upon your site. I have not read much so far, but will try to read more this evening. I wanted to let you know that there is hope. We were given none and our Annabel turned 3 this past March. I will be praying for your journey. I was wondering if I could add your link on the side bar of Annabel's blog. There are so many prayer warriors praying for our special babies. I will wait be adding for your approval.
Blessings to you, Cathy & Annabel

sea star said...

What sweet photos of your little guy! May God continue to grow Christian and his parents in strength.