Hope for Charlie

Week 28

Was a good week, Little Charlie went to St. Louis and Chicago... spent much of the week moving and kicking.  I know that it has been many years since Hannah was born, but I do not remember her throwing as much elbow or foot :).  He also enjoyed Hannah's birthday party as it had a DJ at the roller rink and he really liked the music...

It was a bit of a tough week, I stopped by and visited a newborn of one of my team... a sweet, beautiful boy.  While I will always be joyful for a family to receive such a gift, it is a little difficult right now.  It was wonderful to hold their little boy, he was home and he was perfect: his heart, his brain, his fingers that I was able to hold...  I just wish we could have had the same. 

It was also a tough week for our daughter, Hannah.  She has gotten to the stage of anger in her grief... that it isn't fair and I can't really tell her the why's of these things... it just is. 

I see this becoming a more difficult as the weeks go by... but when I was in the doctor's office listening to his heartbeat while he had the hiccups, I laughed and knew that if he had the strength to do this - then so do we.

Week 27

Another week and a lot of activity from our little guy... we did see our OB on Monday and have scheduled our visit with the head of the NIC unit at Baylor for November 2nd.  We will start to compose our birth plan then.

I have been asked by a few why we made the choice to continue, and while some may find that a tough question to ask us, I can understand.  I would not pass judgment for someone who choose differently and from my understanding from doctors and research on the internet, many do.  I will be honest that when you receive this news, it is devastating and the emotions that you are hit with doesn't allow you to understand the choices that need to be made before you legally have none.

On August 4th when we heard that I had screened positive, my fear was that I would have to make the choice... What I knew at that moment was that I didn't have the strength to continue, I didn't know what that meant - but to carry our son and know the outcome was and is overwhelming.  Once I understood what not continuing the pregnancy meant, I knew that I could not take his life. 

In life, on earth, we are not given a stop watch, we are not told how long we are able to be blessed with our children, our parents, our friends... it is up to us to treasure each and every day.  I was given a link to a family who was blessed with their son for 99 days with Trisomy 18 - it was a turning point for me, because in their story and pictures you cannot miss their joy as a family. 

I am also told by many women that they wouldn't have the strength to do this... truly I do not, it is my husband, my daughter, my son and my faith that get me through every day.  It is through our family and friends who support us that I am encouraged. You do not know the strength you can muster until you are in any situation. 

Every day there is grief, but every day there is joy.  While this journey does get more difficult as we get closer to his birth, I have been able to experience Little Charlie's spirit with every nudge and every kick.  I am convinced that the decision I made while my most difficult to date was also my easiest - our son is a blessing and one that I am grateful to experience.

Thank you for your love and support ~ The Deeb Family

Week 26

Today was a good day - we were able to see our son... it was also a day of heartbreak as we have a better understanding of his condition.  What we are able to see is that as we are finishing the week his overall development is now at least a week behind, his legs are 3 weeks behind and his arms are 4 weeks behind and we know that he has a cleft lip - we are unsure of the palate.  He has developed 4 chambers to his heart; however there appears to be a hole between two, he has also developed kidneys, a liver, lungs and stomach, but his esophagus does not appear to be attached to his stomach.  His heartbeat is 125 beats a minute - so still strong and weighs 1 pound 9 ounces.  He also surprised the doctor with how active he is... he continues to show his determination by letting everyone know that he is here and kicking.

We have hope that we can make it to 36 weeks and will count every moment that we can hold him alive.  We are realistic about the outcome but we are blessed with every day he is with us.

Thank you for your continued support!  Love ~ The Deeb Family (all 4 of us)

Week 25

I first want to thank all of you for your love and support - I cannot tell you how much it means to us...  I must say that while we understand many don't know what to say, it is the same for us.  Writing our thoughts, dreams, and progress is tough because we don't know how to put it into words. I can tell you I started the blog a month ago and wasn't able to publish until this week - I think making it this public, made it that more real...

This week was tough because I was gone for the week, you don't realize how much you depend on your support team until it is more than a couple of days...  it was an eventful week as little Charlie was able to experience Chicago, a major league baseball game (Wrigley Field is an experience :)), go to Navy Pier and take a boat ride, and of course have a great meeting with my team.  It was also a pleasure to see old friends and catch up... including my old college roommate who's due date is a week after ours... so the boys got to meet :).

Little Charlie was very active and because I was out of town, I didn't go to the doctor's this week.  Oct 9th will be a "big" appt. as we are going to have another Ultrasound 2 and will be able to better determine our needs for the NIC unit at Baylor.  Currently we know we have a spot on his brain, clutched hands, rocker bottom feet, bone structure that isn't growing properly, what we have also seen is a possible hole in his heart and a lack of a stomach bubble.  We will know more by the end of the week.

I continue to believe and have hope that we will meet our son... the below verse was given to me early on in our journey.  Thank you again...

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)