Friday, July 24, 2009

Final Test

The final results came in on Monday not last Friday as we had been told - test came back positive like the others. I had convinced myself that since we did not hear anything from the doctors on Friday was because the test came back completely different and the doctors did not know how to call and say they had made a mistake. I know crazy but Shane always tells me I'm nuts! so this proves it I guess. I mean how can they be right, I feel the kicks/moves during the day (not as much as the other 2 but I still feel them), we've seen the heartbeat, and none of it seems real, it all seems like a very bad dream but I have not woken up yet. I have 2 beautiful, healthy boys so I don't understand how this has happened and why we have been taken on this journey in our lives.

I go through the motions of the day, I started back to work on Monday and everything seems different but the same (if that makes sense). I'm angry at God and the world and want answers but nobody can give them to me. I have learned one important thing through my sweet hubby & dear friends - I have to talk, I have to let things out, which is not one of my strong suits.

We bought a fetal heart monitor so that when I don't feel movements we can check the heartbeat and get some peace. It has become my saving grace, just knowing that I can hear that glorious sound makes me feel at ease. Last night after having a bad day that is all I wanted is to hear that sweet sound. I laid down and Shane had the monitor, Mason (our 2 year old) came in asking "what is that?" (curious minds of a 2 year old). We both hesitated a moment and told him we were listening to the baby's heartbeat. He sat on the bed beside me and listened and of course he wanted to hold the monitor. He thinks my belly button is the portal to Aiden. Shane showed him where to put it and he listened quite intently and when he heard the sound he announced "that's Aiden's heart!" It's one of those sweet and sad moments in life. He was so excited he got to do it and figure it out. We sat there for a few minutes listening and then put it away. When we finished, Mason looked at my belly button and said "bye Aiden."

I want to share a few prayer verses that a very dear friend gave me, these are prayers that she and her family have been praying for Aiden and it is our prayers as well:

Father, you created Aiden. You formed him. you knit him inward parts in the womb. You alone know how to make what is right in his body. You alone know how to heal Aiden. As him creator, I pray that you would grant healing to Aiden. Let your power envelop him and bring the healing that is needed (Genesis 1:26; Psalm 139)

Father I ask in the name of Jesus for You to heal Aiden so that you might be glorified. Grant healing to Aiden so that people might praise You and honor you for your love, compassion, and power. (John 11:4, Acts 4:21)

Find rest, O my soul,in God alone; my Hope comes from him. He alone is my rock and my salvation; he is my fortress, I will be shaken. My salvation and my Honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. (Psalm 62:5-8)

Father, You are the Healer of the brokenhearted. You declare that You bind up their wounds. Because it is Your nature to heal, I ask You to heal all of my emotional wounds. By Your love and power, remove the hurt and anger that I am experiencing. Help me to move on to emotional wholeness. (Psalm 147:3)

Please continue to pray for healing of Aiden and give us Peace in God's decisions.

Sorry if I'm rambling but that is how my feelings come out right now - crazy & jumbled. Thanks for reading/listening.


Saturday, July 18, 2009

Introducing . . . AIDEN MATHEW BRAY

We would like to introduce our very special gift - Aiden Mathew Bray.

On July 7, 2009 at 18 weeks we went for the ultrasound that most parents wait for, to tell us whether it is a boy or girl. Both excited and anxious, Shane & I waited as the ultrasound tech started her magic and gave us a glimpse of our new addition. She checked the heart, stomach, profile, looked at the feet, legs, arms, hands and finally asked do we want to know?? It was a little boy!! At that time, the only thing I could think of is the old sitcom "My Three Sons". I was already trying to remember the names we had started writing down. Shane was estatic and trying to figure out all the pictures. The tech kept going back to look at the hands, she finally told us she had seen clenched hands and wanted to get another view, she also looked at the length of the arms. She said she didn't see any cysts, club feet, or any other problems and thought it was just a problem with the hands. I had a doctor's appointment after the ultrasound, so she led us out the back and said she would send the notes to the doctor but felt it was a condition that would be fixed at birth with surgery and/or casts.

We went to my doctor not knowing that she had called and possibly gave other clues. My doctor suggested it could be a mis-diagnosis but she did not normally call him, he gave a couple of suggestions to the sonogram as Down's Syndrome or Edward's Syndrome (Trisomy 18). My heart was breaking, in such a short period of time our lives had changed FOREVER. We had 2 beautiful and HEALTHY boys at home. He performed the AFP blood test and said the results would be back in 5 - 7 days. In the meantime, he told us that several fetal doctors come up from Baton Rouge one day a week and that just happened to be Wednesday (the next day), we were scheduled to leave on vacation on Wednesday but asked if we could be fit in and we could leave later. By that afternoon we had an appointment for 8:30 the next morning. We went home and finished packing our bags and got the boys ready for their beach trip. We dropped the boys off at my mother's and went to the Fetal Medicine Clinic, not knowing what to expect. We were called back and after the initial exam the doctor came in to perform the Level II ultrasound, he went slowly over ever inch of the baby and said that he saw 2 characteristics that were known factors of Trisomy 18. He suggested we do an Amniocentisis, the final results would take 7 - 10 days but the FISH results would be back by Friday (2 days away). He said that the tests would confirm his suspicions - TRISOMY 18. He explained more about it but the only words that registered were "failure to thrive" and with most probability I would not carry to term.

We walked out of the hospital knowing that we had 2 excited little boys waiting on their beach trip and us to take them. We thought about cancelling but we did not want to do that and thought it would get our minds off of things for at least the next 2 days until we received the call. The next 2 days were the best and worst days of our lives. Hunter has decided that he loved the water, he played in the waves and with other kids that he met. Mason was not as crazy about the gulf but loved the sand and pool. Friday came and waiting for the call was an eternity. The doctor called and confirmed our worst fears, the FISH test came back positive for Trisomy 18, this test has a 98% accuracy. After calling a few family and friends we decided to stay another day and think and spend time with the boys - all 3 of our boys.

We went back to my doctor on the Tuesday after we returned to town and the results from the AFP test were in and it was a 1 in 10 chance of Trisomy 18, that is 2 of 3 confirming results. The final results will be in on Friday. We went to see another perinatologist to answer some questions for us. Shane & I are not doctors and will try to explain this as easily as possible.

Trisomy 18 is the second most common trisomy or chromosome disorder and occurs when a baby has three of the eighteenth chromosome. This results in 47 chromosomes instead of the normal 46 in the affected cells. It is this extra genetic material that causes the problems associated with Trisomy 18.
Trisomy 18 is also called Edwards syndrome (or Edward's syndrome) and occurs in about 1:3000 live births. Unlike Down syndrome, Trisomy 18 is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%)> do live more than 1 month.

What this means to us and our family;we have decided to carry this baby boy to term and enjoy what time we are given. Relishing in the kicks even if few (one characteristic is reduced fetal movement). During the ultrasounds we have been told that the heart, stomach and kidneys are normal and should not have any problems through the pregnancy.

We continue to ask for prayers and support. God can work miracles and we do not know what he has in store for us. Thank you to everyone that has called, sent cards/letters, brought by food and shown us great support/love. We have been shown through this ordeal that we have great friends that show love and affection rather than just talk about it.