Monday, January 23, 2012

34 Weeks and counting

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!

Abby's siblings at Christmas: Emilia 6, Lucas almost 5 and Lily 2

Me and Abby at 33 weeks, the day of her ultrasound!  

Abby at my 33 week ultrasound!

Abby at 25 weeks!  What a cutie!

Me and Abby at 6 months!!

Another update

Hi Everyone! I just wanted to say thank you for continuing to pray for Abby. I am almost 27 weeks now and we had another ultrasound on Thursday. They took an echo cardiogram on her heart and we received wonderful news that her heart and kidneys are normal, so that felt soooo good to hear! We also met with the neonatalogist in the NICU at UMass Memorial. He was wonderful. He was compassionate, supportive, knowledgeable and super kind. I felt hopeful leaving our meeting even though what he told us confirmed everything that we already knew. 

I am grateful for all of you! God Bless,


Confirmation of diagnosis

Sigh. Where to begin. 

Campomelic Dysplasia, “CD”. That’s Abby’s official diagnosis. When I first got the call I was happy. I was grateful that it wasn’t Ostogenesis Imperfecta Type II, aka “Brittle Bone Disease”, which is lethal. That was their second prediction if it wasn’t CD. But then deep sadness appeared later that day because reality kicked in. 

CD is a very rare disease. 1 in 80,000 babies are born with it. It is a sporadic gene mutation. It is not genetic nor could it have been prevented or avoided.

There are many complications with CD. The doctors have told us that she has a 25% chance of surviving past the neonatal period (the first 28 days of an infant’s life). The doctors have told us that babies born with CD have weakened cartilage that forms the upper respiratory tract. Cartilage is needed to contract and expand as we breathe, but with weakened cartilage babies are unable to expand and contract on their own and therefore their windpipes collapse. There are medical interventions that are available and we hope she is a good candidate, but we won’t know that until she arrives in March.

Other serious complications of CD are bowed legs and limbs, club feet, short stature, possible cleft palate, 11 sets of ribs instead of 12, and spinal problems. Her ultrasounds show her legs and arms bowed, club feet and spinal problems. As for the other characteristics mentioned, we won’t know how ‘good or bad’ it will be until she is born.

I am now 25 weeks pregnant and I hope she stays put until her due date. I can feel her movements and flutters and I love it. She is growing everyday. She is small in length and okay in weight. But she is 0.5 ounces heavier since our last ultrasound and my belly is widening so I know she is growing. The bigger the better I say!! Otherwise, I feel fine pregnancy wise!

Every day is a gift. Before that day when we received the initial news that something was wrong, I took this pregnancy for granted. I took Abby for granted. I was like, this is my fourth baby, nothing can go wrong, nothing will happen to us. But here we are, faced with life changing decisions that will forever be with us. I’ve been told that God will guide us in making those decisions. I am certain He will.

Abby is a person, a life, a soul!! I love her!! She has chosen me. She has given me gifts and treasures already, before even meeting her!! What a blessing!!

Abby and I are on a voyage together with an unknown destination for now but a guaranteed one in the end. I see myself as her vessel. God is the steering wheel and she is steering with Him at her side. Right now, we are traveling in rough waters, but a calm wake awaits us.

Please continue to pray for Abby. Pray for her safe arrival and journey into this world. And may God take care of the rest. Amen.

Original News about Abby

I apologize in advance for the method of delivering this message but it is overwhelming to say the least.

I’m not sure if you are aware, but I wanted to share our news that I am 20 weeks pregnant with a girl. We are naming her Abby!! We are thrilled and petrified at the same time. Abby has many complications and her condition is serious. What was supposed to be a routine ultrasound has turned into test after test. She has been diagnosed with skeletal dysplasia (dwarfism). There are several hundred different types of this condition and the doctors have told us that she has one of the worst of its kind and her survival is unlikely.

I am sure you all have questions and I totally understand. I will keep you all updated as I continue to learn more about her and her well being.

I am writing not only to inform you but to ask you for your prayers for Abby. The power of prayer is a mystery and all I ask of you at this time is that you pray for her. We are deeply saddened with this news but we are not giving up on her and will do everything we humanly can to help her. I believe that God has a plan, one that I cannot understand. She is mine because it is His will, that I am certain. I am blessed with her gift and wouldn’t have it any other way.

My faith and your love and support are the reason I can cope with this. Thank you and God Bless.

Aimee & Roberto