Hi Everyone,
I've decided to create a blog for Abby. I joined a support group for families with children with Campomelic Dysplasia and have been inspired to create one for Abby! It's an awesome and wonderful way to update all of my friends, co-workers, and family near and far. I hope you enjoy!!
I am 34 weeks, with only 6 to go! We had an ultrasound recently and I was pleased with its results. Scroll down for a peak of her! They took her measurements. Her head is measuring at 33 weeks, which is where she should be since I was 33 weeks at the time! Her little body however, is still measuring small at 28 weeks, and her chest is small as well. But this piece of information is not new news to us so I am grateful for the results overall!
I gave my notice at my job and my last day is this coming Wednesday. This is bitter sweet for me. I love the balance of being at home with my children and working part-time. It gave me the ability to socialize and engage with adults and use the left side of my brain!! LOL. But it was a decision that was necessary and I will miss my co-workers and my friends that I have made there. I know my children will miss their nanny too! It will be a transition for us but one that I hope that we can easily adjust to!
As I mentioned earlier, I joined a support group. I was amazed to see actually how many members are out there in this world. The support has been tremendous for me! I have so many friends, family, co-workers, and friends of friends praying for Abby and our family as it is and now I have this new network of families that have experienced or are experiencing the same as me. I felt lonely at times, not knowing what life is like with a baby with such trials and tribulations carved out for her even before being born, but I am gaining strength and encouragement from these families and of course all of you!
We have had a lot to figure out before Abby arrives. I had a lot of stress about the unknown! Childcare for my kids, vaginal vs. c-section, etc. etc. But things are lining up now finally. My doctor is discerning vaginal versus c-section. I am leaning toward the latter, but I won't know until my next appointment in a week and a half. My mother lives in Nova Scotia and will be arriving on Feb 28th. I am so relieved!! My kids are excited that Grammie is coming! My sister-in-law will help us with our kids while I am in the hospital. Thank GOD for her! She's amazing and I am grateful for her. Numerous friends and family have offered to stock up my freezer and to help with my kids once I am out of the hospital. God is good!
At least once a day Emilia and Lucas kiss my stomach and say hello to Abby. Emilia is very curious about Abby. She says she is worried that Abby will die once she is born. I reply, "I am too. But let's pray that that doesn't happen". And then we do. She is as aware as a 6 year old can be and we are embracing each moment with Abby. I am getting to the point that I am looking forward to not being pregnant, only because of all the pregnancy woes and toughness on my body, but then I am grateful that she has made it this far and that all of the woes are worth it!
Over the holidays I received the Sacrament of the Sick from our Pasteur. It was just me, Roberto and the kids and it was a lovely moment. The following week, we received a pilgrimage for Abby at Fatima Shrine. We walked around the premise and prayed the rosary for her with about 25 people. It was a special moment and one that I will never forget.
I am visualizing making it to the end!! Earlier on, the doctors were skeptical that I would miss carry or lose her before birth but I really don't think that that will happen at this point. I am staying positive and really believe that her fight will be after she is born.
Thank you all for your continued love and support for Abby, me and our family! Muchos Gracias!
I love that you and Kristen have blogs! I'm always excited to keep up to date with other CD families! We are praying for you and little Miss Abby. PS if Braden were a girl we would have named her Abigail :) We had a C-section planned to minimize the trauma for Braden since they were concerned about what a vaginal birth would do to his chest...that and he had a big head too so win-win for mommy and Braden ;)
ReplyDeleteBest of luck and many prayers headed your way. Remember you are Abby's biggest advocate and don't let the doctors discourage you. Sadly we have ALL gotten the grim diagnosis and poor survival rates and our kiddos fought against all odds. They AND you are stronger than they think so HANG IN THERE :)
Lots of love from Iowa!!
Hi Amanda! I've also enjoyed reading your blog as well! It is an inspiration to me and my husband. We viewed some pics of the boys last night and we think that you have an amazing family! Thank you for your love and support! It feels good to share with other families that have gone through/going through what we are going through!
ReplyDeleteHi Trace,
ReplyDeleteMy name is Cheslyn Fortuin and I am from South Africa (Cape Town)
My beautiful daughter Imaan was diagnossed with Campomelic Dysprasia, she was born on the 20th October 2014 and passed away a true fighter on the 27th October 2014.
She would have been a month tomorrow and everyday with every minute my hearts aches and misses her.
I decided to check on the internet for any support groups and more information about this disease as i believe there is not much awareness at all.
I think Imaan was the first baby to be diagnosed with this is in South Africa.
I am not sure how support groups work or even where to start but i thought i would email you and ask you how are you doing and how you copied?
Warm Regards,
Cheslyn (cheslyn.fortuin@gmail.com)