Tuesday, June 30, 2009

June 30th Update

Caydence was doing very well today. Her nurse thought she had a lot more spunk than usual. I think her new medication is really making a difference. She seems to be able to take more of her bottle before falling asleep.

At her 4:30 she was wide awake and got a bath from her Daddy. I think she liked it. She didn't fuss at all. Here is a picture of her after her bath making a funny face for the camera.

Her weight is now 5 lbs 3.4 oz and she's grown an inch since she was born.

I'd like to say a special hello to Carrie from Life As We Know It and Cheri from Raising Reid Thank you for your kind words :)

Monday, June 29, 2009

June 29th Update

Caydence started her digoxin last night. I think it is really helping already. She chugged down 20 ml of her milk at her 1:30 feeding (she takes about 38 per feeding). Usually she'd only take about 10 ml and then we'd have to give her the rest in her tube.

Speaking of her tube... Today they wanted us to get more experience putting her tube in. I had done it once before. I was hoping Josh would be there this time, but he had to work late. So I did it... OMG it didn't go as well as last time! This time she was awake and fully aware of what I was doing!

She was screaming and crying her eyes out! I felt so bad :( She hardly ever cries. I got it in eventually, but it wasn't easy! I wanted to cry myself :( Hopefully next time Josh will be able to learn how to do it. I don't want to be the only one that knows how to change it.

The nurses made new name signs for all the babies cribs for the 4th of July. Ain't it cute? They let us keep the old one. I'm gonna frame it and put it in her room here at home.

The cardiologist visited her this morning and seemed to think she looked alright. Nothing much else to report today.

Sunday, June 28, 2009

Sunday update from Daddy!!!!

Well, today I made Jenny stay home to rest up and I was the one to go and take care of Caydence at the hospital. This was the first time I got Caydence all to myself so I was excited and scared to death at the same time. But all in all, the day went pretty smooth. Caydence gained half an ounce which is fine, any weight gain is good these days, and they're going to start her third medication tonight.

But the worst thing was having to change her all by myself along with having to pick her up all by myself. Up to this point, someone has always placed Caydence in my arms, but the nurses made me pick her up and put her down by myself and I did it!! I was scared and shaking but Caydence didn't break so I guess I did ok. The nurses seemed to have fun at my discomfort and they all said that they would make sure mommy knows how I did so I could do this kind of stuff more often. Funny group of people we have there! Otherwise, the day went off without a hitch so I'm happy. Thanks for reading.

Saturday, June 27, 2009

June 27th Update

Nothing much new today. Her heart is really making her tuckered out so she had to have most of her feedings today through her tube. They might start her on a third medication tomorrow - Digoxin. Her hair is really growing a lot. It's kind of a light brown.

Josh convinced me that I need a day off from visiting the hospital. I'm on the verge of exhaustion, so tomorrow I am staying home and sleeping in between pumping every 2-3 hours. It's gonna be hard to stay home, but I know I need the rest and Josh will be there with her. I told him he needs to take lots of pictures for me :)

Friday, June 26, 2009

Introducing Caydence Bristol!

Our beautiful daughter Caydence was born just a couple weeks ago on June 10th, 2009. She weighed in at 4 lbs 8.7 oz and was 17 inches long. She wasn't due until July 5th, but decided that she wanted to make her debut a little early.

Back in February, during my 20 week ultrasound we found out that our baby girl has a heart defect - AVSD (Atrioventricular Septal Defect) or AV Canal. Meaning, she has a hole between the upper two chambers of her heart and another between the lower two chambers of her heart. She will require open heart surgery to repair the holes when she is 6 months to a year old. A really good website which explains her defect is: www.pted.org

We also found out that this heart defect is very common in babies with Down Syndrome. Our doctor asked us if we wanted to have an amnio to see whether or not she had it. Josh and I decided that the diagnosis didn't matter to us and that we would love and take care of her either way. So we declined it and decided to wait until she was born to find out.

When she was born the neonatologist told us that she suspected that Caydence had Down Syndrome based on some physical features and a few days later, a test confirmed it. Now most people would think Josh and I would be upset or disappointed at hearing this news. But the truth is, is that it didn't phase us in the least.

As most of you know, our 1st baby Katlyn, was stillborn last February due to a underlying blood clotting disorder that I didn't know I had. Losing a child really puts things in perspective. Although we wish Caydence was 100% healthy, we are just soo incredibly happy that we have a chance to be parents to her and that her heart is able to be repaired.

Right now she is still in the nicu. Here are some milestones over the past couple weeks.

June 12 - She got her IV out and was held by her Mommy and Daddy for the first time.

June 13 - Got her feeding tube out and went off oxygen

June 14 - Had her first tub bath

June 15 - Started taking Lasiks (Dieretic)

June 19 - Started taking Enalapril (Blood Pressure Med)

June 20 - Feeding tube was put back in. Her heart is making her get tired out more easily so she isn't able to finish her bottles.

June 21 - Peed on Mommy and Daddy during a diaper change :)

June 24 - Moved out of her incubator into a crib and is maintaining her body temperature

June 25 - Reached 5 lbs and her umbilical nubby fell off

June 26 - Her blood pressure medication was changed from Enalapril to Captopril which can be adjusted easier.

Right now there is no word on when she will be coming home. But her cardiologist thinks it will probably be closer to her due date. Right now they want to get her stabalized on her medications.

We will be posting daily to keep everyone up to date on how she's doing.