September 18, 2009

Ode to a Surgeon

I don't know if this is normal but as a heart momma, I have some sort of love, crush, obsession over my daughters surgeon and maybe even cardiologist. As an example, one day as I left the hospital parking lot in my Honda Hotdysey after a cardiology appointment for Alexa, I saw him. "The Man", as some heart families refer to him, Dr. Teodori. There he was calmly crossing the parking lot from the hospital to his throne, I mean, office, while blissfully chomping on a heart healthy apple. Of course I am a law abiding, life loving, sensible person and I would stop for any human being (and animal for that matter) that was crossing in front of me. But when I realized it was him I heard this magnificent "Ahh! Ahhhh! Ahhhhh! concerto started immediately playing in my head, and I was a smitten for him. Like I wanted to role out the red carpet, and stop all traffic around us to protect him, etc. My heart skipped a beat and I stared and smiled as he crossed in front of me. And for a few seconds time stood still. Why?

Well, I will be forever indebted to this man. He changed my life, my families life, he gave my baby a second chance at life. He has literally touched her heart and therefore touched mine. I am forever connected to him. Now some of you may think I was being overly facetious about wanting to protect him so he doesn't get hit by a car. But it's true, he's been in a terrible accident, caused by a drunk driver, that took him out of practice and into the need for rehab therapy on his arm/hands. So I always, include him in my prayers. I'm sure many parents do, not just him but all the surgeons, who have dedicated their lives to mending little hearts. Now I also, realize he is just human, imperfect and mortal and that in the end the one worthy of praise is Jehovah, God, the true giver of life and Jesus Christ his son, the redeemer of life. Believe me, I have thanked them everyday and will be forever indebted to them for all the good they have given me and my family.

But in the meantime, I also thank this humble, mortal man with a great big heart, intelligent mind and healing hands. He has performed some amazing surgeries as you can read here and here. And so, below is a letter I wrote and delivered to Alexa's Cardiothoracic Surgeon about a month after her surgery:

Dear Dr. Michael Teodori,

How do I begin to thank the man that saved my daughters life? How do I tell him how much it means knowing he has literally touched my babies heart with his hands. That he has reached into the depths of her being and given her another chance at life ~ to live, laugh, love and be loved.

She is my third child. She was suppose to be my easy baby but instead I got a special baby. One that has taught me through her broken heart about courage and strength. Who has amazed me with her will to live and ability smile in the midst of adversity. She has known much pain at her tender age and it seems unfair she has gone through more than some people face in a lifetime. But still, I am grateful she is here. Alive, and kicking, … literally. Kicking when she gets happy, kicking when she gets mad.

Thank you Dr. Teodori, for allowing me the opportunity to know my daughter, the little baby I came to love in my womb. For allowing me the opportunity to show her how much I love her, for allowing me the opportunity to watch my older children come to know and love their baby sister with curious admiration and for allowing me to see my husband turn into a pile of mush when he receives her genuine toothless smiles and grins. Thank you. Thank you from the bottom of my heart for doing what you do. I, like my younger daughter said ‘wasted so many thank you cards’ writing to express my thanks to you but it was not enough and of course I realize this letter is still not enough.

While in PICU E Room 23, during the month of September 2008, I watched your dedication to your tiny patients. I heard many great things of you while in the hospital both from parents and staff. And it’s all true. We have first hand experience of your gentle bedside manner. Of your ability to comfort a parents worrisome mind and broken heart at such a stressful time. Thank you for your dedication, knowledge and expertise in your field. Thank you for using it to help so many families and save so many lives. Thank you for listening to the concerns of an emotionally and physically drained mother, … mine. And thank you, wow, for saving my daughters life!

I’ve often wondered who feels more pain, my daughters literal broken heart or my emotional broken heart. I am happy to watch my daughter grow but as she grows I know she faces more surgeries in her life. It is a bittersweet joy. But still, I am thankful we have gotten to know you in the process and feel a little better knowing that, although I never imagined traveling down this road with my precious child, besides Gods spirit that sustains me, I have the reassurance of knowing you are her doctor.

Thank you once again, Dr. Teodori for saving my daughters life once and hopefully over and over.

With Love,

Michelle mother to Alexa

September 15, 2009

Car seats - Sit for this

Yay! My girl is getting a girly girl car seat! I'm excited to be receiving Alexa's new car seat in the mail, well, really by my door any day now! After much research, (ugh, I research everything) I decided to go with a Boulevard in Madison! We've had car seats before, but never a cute pattern. Plus I got a great deal on it (although my husband doesn't think so) through They usually go over $300 and I got it for a sweet deal of $219 no tax free shipping. Can't beat it! So I'm can't wait to receive it, and have my Lexi girl travel in comfort, safety and style!

I've also decided I will be rear facing Alexa as long as possible. Her new car seat rear faces up to 35 pounds and forward faces up to 65. This is very important! Before it was recommended children rear facing until they were 1 year old and 20 pounds. This is no longer the case, now it's at least 2 years and 30 pounds. Please see the video below created by a loving grandpa if you have any doubt about the benefits of rear facing your child.

My older kids 7 and 5, are currently in Britax Regents, they are 5 point harness up to 80 pounds. Yes, some would say I'm over top with this, maybe, but I value safety very much. I try my best to keep my family safe as much as I can. It seems now, that I've been hearing/reading in the news that finally they are talking about the forgotten group of children from 4-8 years old. They still need boosters! Because of a video I found on line, I decided to keep my children not only in a booster but with the 5 point harness. I couldn't help feel heart broken for this family and pictured my own two (at the time) children, if they didn't have each other. See Kyle's video,I cannot hear that song and not think of him anymore.

Don't be in rush to turn your baby over, or move them from a car seat to a booster, every level you go up, your really going down on protection. Here is good link to some more car seat safety info:

Okay, now off to cook some chicken parmigiana I've been craving for days - yum!

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:

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Okay, thanks and good night!

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