Sunday, May 14, 2006

Happy Mother's Day


Sorry to have not had much up here over the last few days. There has not been and more then likely will not be much "new" to put here for a while.

Many well meaning people tell us that everything is going to be OK. Medically speaking Olivia will never be OK. The trauma that she went through at birth severely damaged her brain stem. This is the area of the brain that control the eyes and mouth and is why she is not sucking or swallowing. The damage is also what is causing her spells. The cortex, or top part, of her brain shows to be normal in scans, but where her brain stem is damaged and the signals going from the cortex to the rest of the body pass through there, her abilities will be significantly hindered. She will have cerebral palsy and more than likely have it quite significantly.

We basically have two options, neither of which are good. The first is to bring her home and make her comfortable and let nature take its course. There is no idea how long that could be. It could be a day or 2 weeks. This means someone would be up with her all the time to respond to the alarms of her monitors.

The second is to have her get a trachiotomy and live on a ventilator. The ventilator would breath for her when she is having one of her spells. She would also have to have a feeding tube surgically inserted into her stomach. Both of these would be life-long things and not something that she would outgrow. As the doctor said the other day, she would be alive only due to technology/machines. Even now she is alive only because we intervene and keep her alive. If left alone her spells would kill her. Having the trachiotomy means that she would never be able to speak and the cerebral palsy and unknown cognitive ability likely mean she couldn't communicate with sign language either.

This is where the tough decisions come in. Obviously we want her to live and value life, but in light of all of her severe limitations, is this really what is best for her. We are trusting God to guide us through this time as there are many ways of looking at things. In the end we have to do what is in her best interest and be able to live with it for the rest of our lives.

We want thank all of you for your concern and prayers. It amazes us the 1,000 or so people who have viewed this sight and care about us. We ask you to continue to hold us up over the next little while.

14 comments:

Lisa said...

May God's grace abound. Lisa Cook

Anonymous said...

What a precious picture!! We will continue to pray for God to give you His mercy and His grace.

The Roberts' family

Anonymous said...

A sweet picture! We are still praying very much for you at this time.
Love,
Naomi (Kinney) Frank

Anonymous said...

What sweet babies. I'm not sure even what to say to you. We love you. We are continually in prayer for you. May the Lord give you wisdom and strength and peace. Katei and Brett

Anonymous said...

Dear Brian and Amy: After seeing the pictures of your beautiful babies and reading your story. Our heart goes out to you. No parent ever wants to have to make this kind of decsion. Babies are truly a gift from God and you have been doubly blessed to have twins. I don't know what your decsion will be, I can only tell you that we are going to keep you close to our hearts and pray for all of you. May God give you strength and wisdom at this difficult time. The Campbells from Lisbon Falls Baptist Church.

Anonymous said...

What a great picture of the girls! Know that my prayers and thoughts are with you! I admire your strength and desire for God's will. May God bless you and your family.

Beka Stilkey

Anonymous said...

Please know that your family and your precious Olivia are in my prayers. My God grant you the strength and wisdom to make this difficult decision. You are amazingly stong people!

Anonymous said...

I have been praying for you both and your sweet little girl. Also, the teachers at the Christian school where I teach have been praying for Olivia in our devotions each morning. "The Lord will give strength unto His people, the Lord will bless His people with peace."
Psalm 29:11
Sara Luppino

Anonymous said...

I read your post on the mono webpage and I wanted to let you know that I had a similar situation with my mono girls. My daughter had a different condition but we had to make a difficult decision just as you are having to make one. I would love to share my experience with you if you'd like...just email me at julierolf@aol.com. Your girls are so precious and they are truly a gift from God. Continue to put your trust in him and he will help guide you. take care.

Julie
Mother of 34 week momo twins
EllaKate and our angel Grace

Anonymous said...

Thank you for sharing. Your babies are so precious. My heart and prayers go out to you.

Sibyl

Anonymous said...

I found out about your babies from my daughter, Julie Rolf, who only 4 months ago faced a similar situation. I can tell from your pictures and your words that you are wonderful parents who deeply love your children and have done everything possible to ensure their health and well being. I am praying that God will guide you in your decision and give you the peace that passes understanding. Your girls are beautiful and are precious gifts from God. Cherish each moment and rest in the Lord.

Krista Hindsman,
Pensacola, Florida

Anonymous said...

My daughter Emma has a trach and a vent. She has had the trach since age 2 months and the vent since age 8 months. She is now 18 months and doing very well. My girls were mono mono twins and their cords were in a big ball/knots and Emma suffered severe brain damage and cerebreal palsy. She is not active at all, but is working on lots of things. It was a very easy decision for us to choose the trach but very hard for us to make the choice to put her on a vent. SHe has spells too where she forgets to breathe. All in all I am very happy we made the choice we did. It was very tough though. Please email me iyou want. I would love to speak with you about this. I have been in your shoes and I can tell you what it will do to your future if you decide on the trach/vent. I am so sorry you are going though this. God Bless you. Lori darsmommy@yahoo.com

Anonymous said...

"Many well meaning people tell us that everything is going to be OK. Medically speaking Olivia will never be OK"
To have a child with a disbility your definetion of "OK" has to change. Life is never going to be the same. That is a good thing as well as a sad thing too. People do mean well but its hard to know what to say. I know if I have one more person say "I am so sorry" when they see my daughter who is disabled I am going to pull my hair out. Sorry for what? Sorry that she is here and we are enjoying every min. of it??

LR

Anonymous said...

Amy and Brian,

Hey you guys its me tess. I cannot even tell you how thankful i am that you are doing the best that you can. You know my situation and I know yours God will get you through this yes there will be hard bumps and there will be amazing days but you need to know that i love you both and i wish you and tyler and the girls all the best... I LOVE YOU ALL!!!!