June 26, 2008
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,
June 19, 2008
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!
June 16, 2008
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!