Today we learned that Cayden is suffering from an extremely rare, lethal, autosomal recessive condition called Multiple Pterygium Syndrome. There have only been 200 documented cases ever. So when we tell Cayden he's our little one in a million man, he truly is. And his Daddy and I are also two in a million to each carry this recessive gene, meet each other, and make a baby with both copies of the recessive gene. We are relieved to have a clinical diagnosis, though a confirmatory blood test will be conducted by a lab in Germany. Unfortunately, Scott and I have a 25% chance of any future children having this condition. This means that we will need extensive perinatal genetic testing with future pregnancies.
Cayden had a rocky day, all of his stats were pretty unstable. I was able to hold him for a few hours, but wanted to put him back to see if he would settle. Unfortunately, he didn't really stabilize. Dr. Slagle thinks this could be Cayden saying he's had enough, and that we should keep our phones on tonight, not that we've been turning them off. Dr. Slagle ordered a pain med drip today, to make sure that Cayden is not feeling any pain. Fortunately, Cayd has been receiving amazing care from an unbelievable team of nurses and doctors and we know he's in great hands. If he's starting to struggle too much, or we have signs of discomfort, we will remove his ventilator sooner than Friday.
24 comments:
I'm sorry to hear that today was a tough day for your little man and that your time with him was limited. It sounds like he's getting amazing care from your medical team and I know he's getting unbelievable love from his mom and dad. Sending extra love tonight!
I'm glad that have gotten some answers and can have a plan of action for future pregnancies. You guys continue to be a pillar of strength.
Lots of love,
Lisa and Tim
Paige and Scott, We just learned of your journey with Cayden. Our thoughts and prayers go out to you! Wendy and Colin Smith
Paige and Scott,
We are thinking of you everyday! I have been calling Grandma and sharing the news as you write it.
She has said a prayer every night for all of you...
Cherish you time with him.
We don't remember days, we remember moments.
Always,
Jim, Deb, Jessica and Tom
My Dear Paige and Scott,
Our Hearts and our Love go out to you during this most difficult time in your lives. We feel that we have gotten to know Cayden and have grown to Love him as you do.
We Love you!
Aunt Fran and Uncle Steve
Paige,
I have been following your blog, but have not written until now because I knew that I could not find any words that can take your pain away. But what I can offer is an open heart and my friendship. Even though we are miles apart, I hope you know that I am here for you. Ronen and I lost a son who was born at 20 weeks. I know it is not the same situation but I can relate to the pain of having a child that you nurtured from the moment of a positive pregnancy test, slip away from you. Please know that you are not alone. I want you to know how much I admire your strength and your ability to share your journey with others. Your willingness to be open and reach out will help you through this time. By reading your letters I feel like I know Cayden. He is so lucky to have you as a mom. You are an amazing person. I am so glad that you have this time with Cayden. Every day I pass your parents home and I feel like a part of you is still close to us. Our whole family Ronen, Mira, Talia and myself send us our love, our support and our prayers. Continue to reach out, and always remember that no matter what happens, Cayden will always be with you.
All my love, and lots of hugs,
Karen Malka
We are sorry to hear that today was rough for all of you. While we are happy to learn that you have some answers to your questions, we realize that having these does not make your sitaution any easier or any better. Please know again that we are thinking or you and hoping the time that remains with Cayden is peaceful, comforting and full of love.
Love, Jeff and Traci
I am glad to read that you received a diagnosis, but I am sorry to hear the little guy had a rough day. You continue to amaze me. thank you for allowing me a part of your lives through your blog. Keeping you all in my prayers and thoughts.
Dear Paige and Scott and Cayden--
Aw Jesus, I wish I could just stretch my arms to San Francisco and give all of you a hug right now.
I can feel your love for Cayden just reading this blog, and I'm sure he feels it a million times more. His medical team sounds great, I'm sure they won't let him suffer at all. I don't know why such bad luck has to happen to such wonderful people.
thinking of you,
Linda
Paige and Scott we are all thinking of you and Cayden and sending love and prayers your way.
-Kim Carlson
Dear Paigie and Scott,
Much love too you both. Tough day and days ahead but how fortunate that you have had this time with Cayden to know him and let him know you. Your strength continues to inspire me. You willingness to share your story is so generous as we all care so much about you. You guys are truly one in a million (genetically and in many other special ways :) ) We hope that the next two days continue to provide peace and special moments for all of you. Lots of love, Laura , Dan, Mira, Isaac and Eden
You are all three in a million in more ways than one! You have been so amazing to share your daily walk through this and we are all forever grateful for that. You are at the top of my mind and will be in my prayers all day today, tomorrow and for many years to come. Love to you all!
Hi guys,
I'm sorry to hear that Cayden had a rough day. I'm sure having you there by his side helped him more than the machines and charts can show. I hope you and Scott have received some comfort in having a diagnosis that helps to understand Cayden's condition. He is an incredibley brave little boy born of immensely brave and loving parents. We wish you all peace, love, and comfort through these next few days.
Love you lots,
Erin and James
I know that there are no words that someone can say in this situation, so I just want to let you know that I am thinking of the three of you, and keeping you in my prayers. Love, Sam
Hi Paige and Scott, It's good to have answers, even cold, hard answers. As Laura says, you are 1 in a million in lots of ways! I know your love for Cayden will enrich the love you feel for his future siblings. Evan and Kaila send their love--K read your blog yesterday and the kids and I had a long conversation about your journey over these past days. As you hold your sweet little man today, please know that there are lots of us who wish we could put our arms around you.
Love, Sharon, Steven, Evan and Kaila
Paige and Scott, there must be a flood of emotions from one extreme to another. Relief that you have a diagnosis Grief that Cayden has to struggle with what that means. Elie Weisel said that life is all about moments. The three of you understand that living in the moment is a powerful reality. I am sorry that this life lesson is in the midst of such a difficult reality, but Cayden's life will guide the two of you forever. He has given so much in such a short time. Kiss him for all of us, and hugs go to you as well. You all are in our prayers. L'shalom, Rabbi Z
Paige and Scott,
Emily just filled me in on Cayden's birth and pointed me to your blog. You are showing such incredible strength and love in an impossible situation. My prayers are with you.
Carey
Paige, Scott and Cayden-
Thank you for sharing your journey with us through your blog, emails and calls. Your amazing ability to offer us strength and support while in the midst of everything speaks to how truly amazing you are! Keep staying in the moment and enjoy your special time with Cayden! We love you...
Michelle, Pete and Abbey
"Thank you for making me so wonderfully complex! Your workmanship is marvelous-how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in my mother's womb. You saw me before I was born. Every day of my life recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered!"(Psalm 139:14-17) "Do not be afraid."(Exodus 21:20.)
Paige and Scott,
I am so sorry to hear what you are going through with you little Cayden. He is a beautiful boy and so very lucky to have so many people praying for him. I will keep you all in my prayers.
Allison Watt(Myss)
We are thinking of you all every day during this special week of love. What an incredible gift you've given Cayden. Love, Maggie and Ken Corens
Paige and Scott,
I've asked God several times this week to touch your hearts with strength and love. Cayden is so fortunate to have wonderful parents like to the two of you. You both are remarkable people, and I'm honored to be part of your circle of support during this trying time.
Sincerely,
Lisa M.
Paige, Scott, and Cayden,
I hope you were able to spend some quality time together today as a family. I continue to be inspired by your strength. Love you lots and will keep you in my thoughts.
Emily (cherniack)
Please know that I am sending many thoughts and prayers your way and wishing each of you strength in the days ahead.
Bev Borgstrom
Paige and scott,
I am sure that a diagnosis offers some comfort at this time, and I am glad that Cayden is getting the excellent medical care that is offered at the hospital. I hope you continue to enjoy your time with him, and with all three of us together as a family. You have been so genereous with sharing your journey and your experiences that I feel like have gotten to know and love Cayden over the past weeks, and I want to thank you for that. Know that we are sending love and support to you, scott, cayden and the rest of your families today.
Lots of love,
Melis & Pete
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