its a marathon not a sprint

(Originally posted on 11/5/12)

We started our week with a Monday and almost six hours of doctor’s appointments.

Baby doctors are amazing. We always go to appointments feeling very nervous but leave feeling like we are getting the best care. We first meet with a neonatologist named Dr. Greg Martin. Who taught us a few things today…

1. I will be delivering Elliot at Banner’s Good Samaritan. I will be induced somewhere around February 28th.  They prefer a planned delivery so they can have all the doctors we will need on staff.

2. If Elliot requires open surgery he will remain at Good Samaritan. If the surgery can be done with scopes (best case scenario) he will be transferred to Phoenix Children’s Hospital.

3. We should plan on a NICU stay of at least 6 weeks, but could be months

4. Elliot will be his 6th patient this year with CDH. One just had her surgery today, one was only given “comfort care” until they passed and the others have had success.

5. There will be a lot of mystery until Elliot is born.

We got a tour of the NICU and we meet a CDH mother named Joy. I had never met Joy before but we have a lot of friends in common so, I knew of her and her baby Lynlee.  You can read her story at joyandaaron.blogspot.com. Their sweet baby had surgery today and could use some extra prayers!!

After that Elliot got a heart Echo. They wanted to get a closer look at the small hole in his heart. Unfortunately he’s a little rascal and doesn’t like to participate during ultrasounds. He never shows his face and had either an arm or leg over his heart. They are now sending us to a cardiologist who will hopefully have better luck. The good news is what they could see looked good.  His heart is definitely being pushed to the right and is slightly rotated which is expected with CDH. They did say his heart isn’t as rotated as some of the others they have seen.

During the Echo we got a surprise visit from the genetic counselor. He had gone to the front desk to get our number to call us with the blood test results when he found out we were in the office.  We are so happy to know that the tests came back negative, meaning that Elliot doesn’t have any of the big three chromosomal abnormalities!!!

Some more exciting news… I felt Elliot move for the first time! What an amazing feeling. Some days I wish he could just stay in there forever.

We would like to thank all of you who participated in fasting on behalf of Elliot with us this weekend.  It’s amazing how much comfort and peace you can feel during such difficult times. There isn’t a day that passes with out some tears but we are remaining positive and hopeful. Your prayers are felt and greatly appreciated.

I would post a pregnancy picture but I seriously got asked the other day if I had lost weight. Maybe in a few weeks I will look pregnant. Until then enjoy a picture of Elliot!

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4 thoughts on “its a marathon not a sprint”

  1. We have never been more excited to hear about negative results! Not a prayer is said in this home that doesn’t mention your precious family. We love you 3 and know that there are many more days with good news to come!
    -love the Bellus family

  2. Casey what wonderful news! Thank you for this update! I will be messaging you soon through facebook to ask a few other questions about your appointment (sorry my internet has been sketchy the past few days!) I am so relieved to hear that baby Elliot doesn’t have a chromosomal abnormality – his story and Rivers’ are just so much alike up to this point. Lots of love and prayers will continue to come your way!

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