Feeding Update

(OK - so this picture doesn't have anything to do with eating, but we just had to buy this onesie when we saw it. We thought it was just perfect for her little Mohawk. And of course we know that everyone would like to see how cute she is!)

Well, Caybree has decided that she isn't crazy about the bottle and much prefers to be nursed. (Yeah!) She was doing a partial feeding from me once a day on the weekend. (They weigh her before and after her feeding to see how much she got.) The remainder is either attempted by bottle or tube fed. (They usually feed her by tube.) But, yesterday and today she nursed 3 feedings!! One yesterday was a full feed and 2 almost were. Today, they were all almost full feeds. She is doing quite well with keeping everything down so they are increasing her feeds by 2ml each feeding. She was up to 37 ml when we were there at 9:00 p.m. We are so excited by her progress. She is such a great kid! And did I mention how cute she is?

Brookelyn's Weekly Visit - May 27th

Brookelyn was finally confident enough to hold Caybree with her "tubes". (They have made her nervous since she has been at St. B.) She was so excited and held her many times throughout the afternoon. (The tube in her nose is not for suctioning anymore. They put one back in for tube feeding when she doesn't take enough at her feeding times. When they would put it down her throat she would gag and vomit - this way it is left in and doesn't seem to bother her.)


Of course Brookelyn had many kisses for her little sister!

Our second family photo. Man - won't it be nice to have one that isn't in a hospital?!

One of the nurses gave Brookelyn a mask and rubber gloves to play doctor at home. But why wait to play doctor at home with dolls when she has a little sister to play doctor with now!

Finally an Update

Sorry that it has been a week since the last update. For as long as it seems that we have been at the hospital with Caybree, it has also gone by very quickly. If that makes any sense.

Here is the update for the past week:

When Dr. Wiseman came to see Caybree on Wednesday, he gave the go ahead to have the tube from her nose removed and to start with feedings. They started her off with 5 ml every three hours. She did very well with the first couple of bottles and we were very excited. However, Thursday she was having a little trouble with the feedings. (They had started with increasing by 2 ml every other feeding.) She was up to 13 ml but went back to 10 ml for the day. Friday, they upped her to 15 ml for each feeding that day. The noon feeding, she latched on very well to be nursed. She slept completely through the 3:00 p.m. feeding and didn't do well with nursing at the 6:00 p.m. feeding. Saturday - again good with nursing at noon, but not in the evening. Today, she's up to 20 ml each feeding. She didn't latch well at noon, but we will see about the 9:00 p.m. feeding. At least we know that she is able to latch for nursing, it will just take us a while to get there. When she is bottle fed, she still needs a lot of encouragement to finish her bottle.

Dr. MacDonald told us Friday to expect to be at the hospital for another week or two. We are hoping it is closer to only a week, but we do not want to go home until everything is working well. It would be horrible to finally go home only to return to the hospital.

Thanks again to everyone for all of your support. We appreciate everything, especially all of the prayers. We are thankful to live in such a wonderful community, to have such great friends and amazing families. We are truly blessed.

May 21st, 2008

Today was a great day! The tube came out of her nose, the tape came off her cheeks and she got to start eating! (2 days earlier then they thought she would!)

"BURP!"

Daddy got to feed her the next bottle!

The bandages came off today, as well. The incision is right across her abdomen in an inverted V. The duodenum on the one side and the tumor was on the other side.

May 20th - Another visit with Brookelyn

Finally a picture with her eyes open! (Check out the bruises on her hand from the IVs.)
Brookelyn had lots of kisses for Caybree! She sang her songs and even played peek-a-boo with her!)

Post Surgery

May 13th - Back at St. Boniface after her surgery.
May 14th - Very swollen from water retention. (She gained

almost a pound of water.)

May 12, 2008

The day before Caybree's surgery we took Brookelyn to visit her little sister.
She was much more relaxed and was very excited to see her again!

Caybree's bedside nurse let Brookelyn listen to her heartbeat.

Our first family picture.

Brookelyn's Field Trip!

On Thursday, Mark and Brookelyn came back to Altona because Mark had to work. On Friday afternoon Brookelyn went to Isabelle's while Mark had a nap. Then she went to Oakley's for a sleepover!

Bubble blowing!
Bubble gum ice cream!
Purple slurpies!
Oakley's Grandma & Grandpa took them to the farm on Saturday morning. They saw 14 golden retreiver puppies, cows and a horse. They also went for a walk and looked for golf balls. They found LOTS!
Holding hands.

Relaxing, watching cartoons after lunch.

Swimming in Tom and Donita's pool!

They lounged around like this for about 15 minutes.

Done...what a great day! They were both pretty tired after all this!

The Latest!

Well, our little fighter continues to prove that she is full of spunk!! Caybree has gotten rid of her arterial line, leaving both hands free of tubes of any kind. However, she does have to wear little mittens now, as she is determined to pull the tube out of her nose!! (She can still manage to get her little hand around the tube with her mitts - hopefully she will soon get her way and it too, will be gone!) She has a central line in her right leg and the leads for monitoring her breathing and heart rate and that is all! It is very exciting to see the tubes slowly disappearing. Caybree is enjoying the freedom of being able to move her arms and kick her legs. She lets you know that she doesn't like her feet being touched or covered, but loves to be cuddled.

I know I am her mother, but I truly think that she gets cuter by the day!

We continue to be grateful to everyone for their support, love and prayers. I don't know where we would be without such amazing support from our family, friends and community. We truly are blessed. Thank you.

P.S. On day 10, so May 23rd, they will hopefully start trying her on milk! Yeah food!!

A GREAT DAY!!

First off - when we called the hospital this morning we were told the tumor was benign!! NO CHEMO!! Second, she had a huge poop!! 24 hours after bowel surgery and she pooped! Then later this afternoon they took her off the respirator because she was just fighting it - she was determined to breath on her own. It has been such a great day! We are so proud of our little angel! Thanks again to everyone!

Good News!

The tumor was benign! Yahoo!!
Megan will update later.

The Latest

Caybree was doing really well yesterday. She was quite swollen in the face and arms from the fluid retention. When we first went in she was still very sedated, by last night she was moving around a little more and reacting when the nurses were suctioning her and doing different things. She is getting morphine and Tylenol for pain. The morphine suppresses their ability to breath, but Caybree was setting the alarm on the ventilator last night because she was doing some breathing on her own. We are just getting ready to go and see her now. We will update with any new news later on!

Back to St. B

Yeah! Surgery is over and all went well. She was in surgery for just over 3 hours and they were able to do both procedures. An hour after the operation they transported her back to St. Boniface. The staff at the Children's Hospital were great, but it is nice to be back at St. B. (It is almost starting to feel like home.) Caybree will be sedated for a while to help with the pain and with probably be on her ventilator for a few days. Hopefully by next week we will be able to start feeding her. (She is now at 6 lbs 10 oz.)

We would like to thank everyone for all of their unbelievable support. All the prayers not only helped Caybree, but also gave strength to Mark and I. Thanks again to everyone. I will try to keep everyone updated with anymore progress.

Surgery is Over!

I just spoke with Megan, Caybree's surgery is over. It went really well! They were able to take out the tumor and fix the narrowing! They are all doing great! Praise God!

Hollie

Monday, May 12th

Well, Caybree has been safely transported to the Children's Hospital. She is scheduled to have surgery tomorrow morning at 7:45 a.m. We will update as soon as we can tomorrow. Thanks again to everyone for their love, support and prayers.

Just pondering life.
Hollie, Deb and Oak came into the city on Friday and stayed at a hotel. They came and got Brookelyn for a swim. They were extremely cute together and Brookelyn had a blast!!

Under the lights for jaundice. Don't you just love the shades?!
Grumpy in for his first visit. (Grandpa Edmunds)
Caybree ready for transport to her CT scan.
A snuggle with Daddy.
Love the crazy hair.

Caybree with her IV's at Boundary Trails Health Centre and getting ready to transport by the Neonatal Unit to St. Boniface Hospital.

Brookelyn going in to see her in the NICU. She was interested, but a little intimidated by all of the cords and wires. She is only able to go in once a week and is looking forward to seeing "her baby" again soon.

Makayla and Brookelyn
Isn't she cute?

Granny Edmunds
4 Generations

Caybree, Granny, Great Grandma, Brookelyn, Megan
Aidan and Caybree (4 weeks apart in age)

Brookelyn had lots of hugs for her new baby sister.



Grandma Stepaniuk





Daddy's girls



















Pretty in Pink

Brookelyn was so excited to meet Caybree. She loved holding her, singing to her and counting her toes.