First hour update

The doctor's just called to say the intubation went well. Only 4 more hours to go.

Surgery Day

As most of you know Amarie is having surgery today. The surgery will last about 5 hours. They began around 10:30am today. This is the third time we've had to hand her over, and it does not get any easier. The doctors are going to give us updates every hour, so Corin and I will be at Children's Health Care at Scottish Rite all day. We will do our best to post updates as much as possible. We are asking everyone to pray. Please pray specifically for Amarie to heal, the doctors to have skill and wisdom, and for us to have faith. Thank you all for your care and concern.

-Jason and Corin

Lamb picture

[The Lord] tends his flock like a shepherd; He gathers the lambs in His arms and carries them close to His heart; He gently leads those who have young." Isaiah 40:11
It is so reassuring to know that during Amarie's surgery the Lord, who loves her even more than we do, has her in his arms and is carrying her close to his heart!

~Corin

Surgery info

Amarie's surgery is this Friday, November 20 at 11am. She will be in surgery for 5 hours. A neurosurgeon and a craniofacial surgeon will remove pieces of her skull and then use those to create cheekbones and eye sockets for her. They will also do some slight adjustments to her eyelids. She will go to the ICU after surgery for a few days and then to a regular unit of the hospital. If everything goes well we will get to go home on Tuesday...hopefully we will be home for Thanksgiving! Please pray that Amarie doesn't have any complications (we don't want a repeat of the first surgery!), wisdom and skillful hands for the surgeons, quick healing, and grace/rest for us as we go through the third hospital stay and surgery. We will post updates here to let everyone know how things are going and updated prayer requests. Thanks so much for your support!

Sorry it has been such a long time since we have posted any updates. Life is crazy!!! Amarie is doing well with her new tube in her tummy. She gets her hearing aids in two weeks...we are looking forward to the look on her face when she hears us better! She is getting bigger (slowly but surely..she is still shrimpy! She is 4 months old and can still wear newborn size). She weighed 9 pounds 8 ounces this week at her 4 month checkup. She is keeping us busy with all of her doctor visits (we have 8 appointments this month and its about like that every month). Its a crazy life being her full time mom/nurse/secretary! Plus, life has been a little crazy this week because Jason has swine flu. He has been out of commission since monday and has to stay away from everyone for another 48 hours. He is doing much better now but had a really high fever. The doctors put us all on tamiflu so I'm praying that amarie won't get sick!

Another update is about the genetic testing. A few months ago Amarie had genetic testing sent to Johns Hopkins to confirm her Treacher Collins. Well...we have learned to expect the unexpected with her! The geneticist knows that she has treacher collins based on her features but the testing was a mystery. Johns Hopkins is stumped. They have never seen the kind of mutation that she has before. So they did genetic testing on us and it turns out that I am a carrier. So we were really disappointed because that will make having more biological kids difficult. We have a strong chance of having another child with treacher collins. While we are so in love with our beautiful amarie, we don't think we could handle her and a child that could be more severe (complete deafness or trach dependent). The geneticist offered us several options for future pregnancies: an amniocentesis to see if that baby had treacher collins so if we wanted to terminate the pregnancy; to undergo genetic testing on multiple fertilized embryos and then implant the ones without the mutation; or to use an egg donor. Believing that life is precious and that it begins at conception we don't want to go with the first two options. We will probably look into adoption. We are trusting God's plan for our lives and know that He knows exactly who is supposed to be in our family. We are relying on Him every day because there is no way we can do any of this on our own! I am going to have to cut back my hours at work to take care of Amarie so we are excited to see how God provides. Its so funny that after we have seen God's faithfulness to us over and over again that last few months I forget that and still get scared. God says to "test him and see if he will not throw open the floodgates of heaven and pour out so much blessing that you will not have room for it."
Sorry this was so much to read..I had a lot to fill everyone in on! Love, Corin

McKenna loved visiting her cousin Amarie at the hospital. The funny thing about this video is that she had been eating Cheetos before she was rubbing the baby's head so Amarie had an orange head! :) Amarie was very alert and curious.

Amarie did great! We are so relieved that her surgery went well (the doctors are too...they said they were all holding their breath when they were intubating her). She had no complications and was able to come right off of the ventilator...which we were so happy about because that meant we were able to avoid a repeat trip to the ICU. It is much better having the feeding tube right in her belly instead of being taped to her face and going down her nose. Plus its more long term and permanent method (she can't pull it out as easily!). We are at our home away from home, Scottish Rite, until Thursday. Thanks for all of the encouragement! :D

Corin