Caybree's Journey

First off Mark, Brookelyn, Caybree and myself would like to thank everyone for their unbelievable support. We are overwhelmed with how wonderful everyone has been with calls, notes and prayers. We are truly blessed to have such wonderful friends and family. The community support and prayer groups bring tears to my eyes every time I tell someone. You are all giving us strength during such a scary time. We are unable to thank you enough. Thank you.

As you know, Caybree Grace was born at 9:34 pm on May 5th at Boundary Trails Hospital. The doctor told us as soon as she had been checked over that she thought like she could have Down Syndrome. (This brought a flashback to about a month ago when I was lying in bed and I had a feeling that we were going to have a special needs child.) I looked at her and replied that yes she did have Downs. We felt fine with having a special needs baby - not that we didn't cry. We did, and still do cry. Not that we feel that we will be burdened by her, but just hope that we will be good enough parents to this little miracle.

We had a wonderful day on Tuesday with family and friends coming to visit and meet Caybree. As you can see from the picture, Brookelyn is completely thrilled to have a baby sister. She loved holding her and giving her kisses. She sang to her and counted her fingers and her toes. It was a wonderful day.

Then the nightmare begins. We wanted Mark to spend the night with Brookelyn at home - knowing that she would have a lot of changes going on in her world - we wanted her to have a little stability. Luckily, I had a couple of friends - Hollie and Christie - who knew that they needed to be at the hospital visiting me that evening. For this, I will forever be grateful and know I will never be able to thank them enough. Caybree had been having trouble latching on and had been taken to the nursery to be fed from a syringe. While she was there, she vomited and began to choke. She stopped breathing and her heart stopped. Thankfully, this happened where it did for they were able to start compressions and revive her quickly. It was during her resuscitation that a nurse came to tell me that she had choked and they were "working on her." Hollie and Christie were there to hold me and be there for me while we waited to hear if she would be okay. I would not have been able to make it through those few minutes and the rest of the evening without them. They got things organized so Mark could get to the hospital without driving and have Brookelyn looked after at home. They each phoned family and friends to let them know what was going on. They stayed with us at the hospital while we waited for the neonatal team to arrive from Winnipeg. (they transferred her to St. Boniface Hospital). Bev C. came to the hospital to pray and offer us her support. Bev and Hollie drove us behind the ambulance into the city. Like I said, I don't know how we would have survived the night without them. Hollie, Christie, Bev, Steve, Deb - you are all Angels and thank you from the bottoms of our hearts. (At first, they thought that Caybree had had a seizure, but that has been ruled out after the brain scan and it was choking.)

Wednesday, Thursday and Friday are all a blur. She has had many tests and we have been on an emotional roller coaster. From x-rays that were taken at Boundary Trails on Tuesday evening, they found she had a narrowing of the duodenum (totally invented spelling - no idea how to really spell it.) This needs a surgery to correct, and she is unable to eat until she has it. (She has been unable to eat so far and has been on IV's since Tuesday night.) She has had a brain scan, EKG and an ultrasound of the abdomen. The EKG showed that she has a strong heart - YEAH!!! The brain scan was good. YEAH!! The kidneys were good. YEAH!! However, the ultrasound showed a mass above the left kidney. This led to a CT scan. The CT scan showed a mass approximately the size of a golf ball - just not round - on the left adrenal gland. This tumor is called a Neuroblastoma. They are saying it is cancer - but they will not know if it is high risk or low risk until they remove it. They are hoping to remove the tumor and do the other surgery at the same time. However, the removal of the tumor is the first priority - if they can only do one, the duodenum surgery will have to wait for a week or so. The CT scan doesn't show that it is growing into the kidney, but they will not know until they are inside. (Please pray that it isn't attached to any of the surrounding tissues.) With this kind of tumor, they worry about it spreading into 4 areas - the skin, and it is good - the bones - she had a bone scan and the bones are good - the abdomen - it is good. The fourth place is the bone marrow - they will test this when she has gone under for surgery.

The tumor is not related to Down Syndrome. We are very fortunate that they found it, as it was found when they were checking to make sure she had kidneys strong enough for the surgery. Had they not found it now, she would have been much older and it could be more serious.\

SO - surgery is scheduled for Tuesday morning at 7:45 am at the Children's Hospital. Our surgeon is Dr. Wiseman and we have been told that he is the best pediatric surgeon in all of western Canada. We know that Caybree is in the best hands, but would still appreciate all the extra prayers on Tuesday.

We are staying with our friends Paula and Chris in the city. They have graciously opened up their home to us and we plan on staying here as long as Caybree is in the hospital. More angels in our lives.

I wish I could mention everyone who has helped out, just know that I appreciate everything from everyone. Pam - for cleaning our very scary house. Paula and Chris - for opening your home and watching Brookelyn. Jen - for keeping the school updated and running around. Hollie - for everything. Christie - for everything. Bev - for your amazing prayers that calm us and give us strength. Ang - for the Angel of Protection. All the staff at Boundary Trails. All the staff at the NICU in St B. And especially our families - we wouldn't be able to make it through this without you. I don't know what we have done to have such amazing friends and family, but we are very thankful to each and everyone of you. Thank you from the bottom of our hearts.

I think that everything is mostly covered. I will try to update as I can. Thanks again to everyone for your support. (I'll post pictures soon!)

Mark, Megan, Brookelyn and Caybree.