Somers, Connecticut (CT) - Full Trisomy 13

Update January 2, 2008

Macie Grace was born on Monday, November 26th, She weighed 5lbs, 13ozs.

We had the best 6 days of our lives with her before she went to be with Jesus. I was so blessed to give birth to this incredible angel and then hold her in my arms while she slowly slipped into Jesus' arms.

I am struggling now because I wanted her longer and I know even if we had her for weeks or months or years it wouldn't have been enough. It is incredible how much you can love someone so much in such a short time. I miss her incredibly and a piece of me died with her. I know we were blessed with 6 wonderful days with her but I ache to hold her one more time, to kiss her, to love her, just one more moment.

I can't begin to thank our family, friends and community for your prayers, support, kind words, compassion. Without all of you I truly do not think we would have had 6 days with her. Thank you so much!!

Love Wendy and Billy (parents of sweet angel Macie Grace)
bmw127@cox.net

Update 11/20/07
I went to our ultrasound today because they were questioning Macie's growth a few weeks ago. They did not think she was growing anymore and said to be prepared to be induced. She absolutely amazed our doctors! Macie was 4lbs. 1oz. a few weeks ago, today she was 5lbs. 12 ozs. For the first time I heard one of my doctor's say, if she was a healthy baby with her health issues, meaning VSD and her omphalocele, we would keep her where she is, so...we are going to treat her like a healthy baby because she is doing so well. She'll either come on her own, be induced if she does stop growing or be induced December 6th, whichever comes first.

With all of our wonderful friends, family, community praying for Macie Grace she is continuing to do very well. The power of prayer is incredible!! I know at any moment she can be taken away from us, but I am taking one day at a time and hoping and praying for what is best for Macie. I don't know the fate of our sweet baby girl but I do know how much strength, hope, faith she has given to me, my family, friends and so many others.

Thank you so much for all of your thoughts and prayers!!

Have a blessed Thanksgiving!!

Love Billy and Wendy
bmw127@cox.net

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Update 11-5-07
Billy and I can not thank our family, friends, our community and now the wonderful people from this website, enough for all their wonderful prayers, thoughts, hopes and support for our sweet Macie Grace. I can not begin to tell each and everyone one of you how much strength and inspiration you have given us and continue to give us. I know I say that often but I truly know I couldn't have done this without all of your love and support.

We went to our ultrasound today and Macie has grown a little, she is now 4.1 pounds. A new doctor who is wonderful, wants to see us every week to make sure Macie continues to grow. If she does not, which I have heard can be common with trisomy 13, I am going to be induced. He also wants to have a pediatric surgeon available when I deliver to fix the omphalocele right away if Macie lives through the birth. It is so nice to have a doctor who is compassionate about our situation and is a little more aggressive than some doctors that have not wanted to fix her omphalocele because of her diagnosis.

I don't want to have false hope but I do feel she is a strong little one that wants to come and see everyone. She has a very strong spirit who has already touched so many lives, including some of the doctors that gave her no hope in the beginning. I continue to be amazed at how she has already done so much for our family, friends and our community and has not even been born yet. She truly is a blessing from God that continues to grow stronger each day and I am in awe how much love and faith there is for our sweet Macie Grace!!

Love Billy and Wendy
Email: bmw127@cox.net

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10-16-07
Macie Grace has full Trisomy 13, I forgot to include that in our email.  We are praying for her each day and hopeful she will come home with us for as long as she is able to.  She is getting bigger and stronger (kicking all the time).  And my husband and I celebrated the milestone which a lot of the doctors said would not happen, I am 7 months and she is about 3 1/2 pounds.  We take one day at a time!!

10-13-07
Our names are Bill and Wendy McCloskey, we live in Somers, CT with our four children, Kate, Elizabeth, Billy and Garrett. At 3 1/2 months pregnant Bill and I were told our little daughter had Trisomy 21 from my blood work and an ultrasound. At first we were upset and then we were very excited. We did do an amniocentesis since we wanted to be sure and prepare our children.

After our amniocentesis Macie Grace, our baby was diagnosed with Trisomy 13. The doctors explained that she was going to be "incompatible with life". We were devastated at first and then we just started praying for guidance. The doctors and genetic counselors all thought termination was the best route.

Bill and I prayed for the right answers and what to do. Once we prayed we knew what to do. We both agreed our Macie had a heartbeat from God and we were not the ones to take that away from her.

It has been a challenging road. We have good days where we are excited and happy that we were given such a blessing and then we have sad days where we don't want to lose our baby daughter. Whatever God has planned we know it is for the best. We prepare for the worst and hope for the best.

We are so truly blessed with our community, friends and family. They are so incredibly supportive, compassionate, caring and we couldn't have done this without them. The medical field on the other hand has been challenging. We have some wonderful doctors and nurses now, but we had to search for them. In the beginning some of the doctors were not sensitive or compassionate to our situation. But with a lot of praying we did find very good ones.

We pray every day for our Macie Grace and do hope for a miracle. I pray for her to be Down Syndrome which was our first diagnosis before the amniocentesis. But whatever the outcome is we know she is a blessing and that we will love her and cherish any time we may have with her.

Bill and Wendy McCloskey
Wendy McCloskey
bmw127@cox.net