September 13, 2009

My One Year Old and Oxygen Saturation Thoughts

Well let's see lot's on my mind. First of would love to share the most recent pics I took of baby Alexa a day after her first birthday. I remember feeling very sad that she would have a scar on her chest and not sure how it will keep looking as she continues to get surgeries, so I kind of wanted to document her innocent and with her scar faintly visible at this time.

Here she is my beautiful little princess at one year old!

Alexa had a echo and her sats checked on Friday morning. She did very well during all of it. She currently weighs 20 pounds and 10 ounces and is 29 inches long. Her sats seemed to start of in the low 80's and then quickly dropped and remained in the high 70's. After we we were done with her appointment, we met up with hubby to have lunch. Alexa all of the sudden started crying with intense pain, pain that would not go away. She cried a lot and turned purple, she even started shaking. She almost never cries and if she does she can easily be distracted and starts smiling again. Nothing would help this time. So back we went to the Children's Hospital ER. I was pretty sure she was having tummy/constipation pain but with her cardiac history they wanted to make sure it was nothing else. I could totally see how different our next surgery would be. She was frightened by the chest x-ray, the strange people holding and prodding her, and she cried when after many hours of holding her and me holding in my pee to the point of kidney pain, I finally asked a nurse to come stay with her for me. It made me sad for her. It reminded me of our past and our future together. Something I wish I could change, but cannot. What worried me about our visit is that I had a chance to see Alexa connected to the pulse-ox and see that her sats were pretty much about 77 sometimes lower like 75 and sometimes a bit higher up to 79 one time 80. This of course made me feel worried. Started wondering if she will make it until next Spring for surgery. Docs were happy when she was in the 80's not sure how they will feel about this. I want to pretend it's not true but I can't, I really wish(ed) she had that extra 6 months to grow and be able to receive a larger conduit. So need to talk to docs about this. If any of you are reading and have had your baby/child receive conduit, how low did the docs let their sats go before moving forward with surgery?

Anyway, after being in the ER for about 4-5 hours, she was finally diagnosed with constipation. Just as I had suspected but they had to make sure. =)

Well, it's getting late and I have to wake up at 4:30 a.m. for my fitness boot camp again, so I will finish typing up some more thoughts later.

Just want to add before closing to please go vote for a "The Doctors Show" about congenital heart defects!! The CHD community has been literally begging for a daytime show platform to help raise chd awareness. We need to educate parents and future parents that may be faced... with raising a child with CHDs as well as create enough buzz to get funding for researching treatment. **THIS IS SO IMPORTANT** It is the number one birth defect and there is no excuse for the lack of education, research and awareness. This would be a huge step in the right direction!!! Please vote here:

Vote for Ideas

Okay, thanks and good night!

1 comment:

  1. Hi there,
    Came to visit your blog after reading your comments on the Doctors TV site. You have such a beautiful girl and I am sorry for all you have been through. I went to the site to vote on the childhood cancer issue as I my 14 yr old niece died of Lymphoma Nov 2007. I voted and started reading all the comments on Congenital Heart Defects as I know little about it. The thing is.....both of our issues are being ignored, our children are suffering and/or dying and no one is paying attention. Our children should come first. Makes me wonder if there's not a way to fight this war frustrating. I hope BOTH issues get a show....
    Take care.
    Kathi Clarke


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