Saturday, September 13, 2008

The Announcement

Alyssa arrived in the world at 12:40am on Tuesday July 15th. To say she is a spitfire would be quite an understatement. She fought hard to get here and I pray she will fight equally hard to stay least for a while. Now we face the journey of our lifetime understanding what is happening to our family and Alyssa Grace...

We are blessed to announce the birth of our beautiful baby girl...
Alyssa Grace Shihadeh,
4lbs 3oz., 18 inches
July 15th 2008
Was the announcement we made via e-mail (on the 16th) to most of our family and friends. Phone calls would have been too difficult; too many questions would be asked. We wanted to celebrate with them before sharing the devastating news that Alyssa was born with an extra 18th chromosome (Edwards Syndrome). A syndrome that would result in her life not lasting more than a few days or months at best. We needed time to digest the thought that our daughter whom looked perfect to us, was not expected to live. How could this be?

Just so you all can get an idea of our journey to this point I am including some e-mails that our Pastor had graciously sent out on our behalf.
I also wanted to take the time to say THANK YOU to our church family, family and friends who have been so caring. We hope that you'll use this site to get updates on us as a family and about Alyssa. We will update it as often as we can.
7/16/2008 : Please pray for little Alyssa Shihadeh. I know some of you were concerned just at the low birth weight. She was transferred yesterday from Chester County to CHOP for testing. The Doctors were concerned about her lungs. Last evening we heard that they ruled out a tumor but have concern about her diaphragm. There other tests that are being done that are potentially serious. Let’s pray that these serious illnesses will be ruled out and that God will help little Alyssa to overcome a difficult start in life! Poor Trish … she delivered at 12:40 am Tuesday and later that same day was released so that she and Ed could travel into Philadelphia to see Alyssa. She has not had a chance to physically recover from delivery and is facing serious illness in her little Alyssa...
At a practical level, Joy has the older three children today so that Ed and Trish can travel to CHOP this morning. Nancy and I will meet Ed and Trish there. Pastor Bob will have an update for prayer meeting... Let’s pray that the Lord will be working this for good at various levels!
Pastor Mitch
James 5:16-18 … The effective, fervent prayer of a righteous man avails much. 17 Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months. 18 And he prayed again, and the heaven gave rain, and the earth produced its fruit.
July 17th: As you know, little Alyssa Shihadeh was born at 12:40 am Tuesday, July 15. She was moved from Chester County Hospital to Children’s Hospital of Philadelphia on Tuesday afternoon. On Wednesday afternoon Ed and Trish met with seven doctors and Alyssa’s critical care nurse. The medical team though not absolutely certain had diagnosed Alyssa as having Trisomy 18. This was the news that Ed and Trish were dreading to hear. On Thursday afternoon at a follow up meeting, the doctors had more results back that confirm the Trisomy 18 diagnosis. The doctors have been good in their conveying of their diagnosis and prognosis while respecting Ed and Trish’s obvious love for their little girl.
Trisomy 18 (Edwards Syndrome) is rarer than Trisomy 21 that we more commonly know as Down’s Syndrome. Trisomy 18 is also much more serious. The likelihood of a child with this condition seeing their first birthday is between 5 and 10 per cent. The underdeveloped brain typically forgets to tell the lungs to breathe. So a little one may come home from the hospital and then just pass away when a parent is out of the room. Those few Trisomy 18 babies who survive a year will not know their parents from a stranger, may sit up but never walk and will never talk. The articles provided at the links below list a host of other problems relating to the digestive system, kidneys, etc.
Little Alyssa is a beautiful, petite baby with a full head of dark hair. She reminds some of us of her sister Jessica when a newborn. Alyssa is stable for now and is tolerating a small amount of milk. She has a tube through her mouth to her lungs to assist her breathing, though she is at a minimal level. She has a smaller second tube through her mouth to her stomach.
We have held off giving some of these details until the further test results were announced in this afternoon’s meeting. Obviously, this is a very difficult trial for Ed and Trish but they are doing well. Trish was walking some today at CHOP but yesterday she was still using the wheelchair as she has just gone through labor and delivery. I believe God is helping Ed and Trish to process this sad news and to make decisions regarding Alyssa’s care. Let’s continue to pray that God would give them help and that they would sense His presence amidst their grief. Let’s also pray for Ed and Trish that they would get some sleep!...
Pastor Mitch
So now your pretty much caught up and we hope you will continue to visit and pray for Alyssa, our family as well as other experiencing this difficult road of T18.

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