Friday, September 25, 2015

The first week: We make plans and God laughs

Our precious baby James turned one week old yesterday. We celebrated with his grandparents, his Aunt, and a couple of close friends in the OR Waiting room at Cooks Children's hospital. 


James was born on Thursday, September 17th, at 8:07 pm. Mom and baby came out of the C-section looking great. James got to meet his family, and then he, Mom, and Dad settled in for their first night in the hospital. 


The first doctor to walk in our room the next morning was the hospital pediatrician. He was there to let us know that he believed James showed signs of Down syndrome, and wanted our consent to send some blood off for genetic testing.


In that moment I was barely awake, and didn't know what to make of what he was saying. Down syndrome?!? Seriously?!? Surely this guy was wrong. My baby was perfect. Alex and I were worried that the test might come back positive, but we were just sure that the pediatrician was being overly cautious. Surely we had nothing to worry about. We got through the rest of our hospital stay, and headed home Sunday afternoon. 


Monday morning I called and scheduled all of our follow up appointments. His pediatrician wanted to see him that afternoon, so we packed the diaper bag and set out for his first outing. We were only going to be gone for an hour, so we packed lightly. 


All snuggled up in an adorable outfit, we headed off to the doctor. We were taken back to a room pretty quickly, and I started filling out a mountain of paper work while Alex helped the nurse check James' vital signs. The doctor walked in, introduced herself, and that is the moment that our world completely changed. 




The crazy hospital pediatrician was right. The test was positive. James had Down Syndrome. 


I was completely devastated and overwhelmed by the number of questions I had swimming around in my head. Will he stick out at school? Will he be able to make friends? Will he be made fun of? Will he ever be independent? Will he have to live with us for the rest of his life? How do I raise a special needs child? Can we do this? Where do we start? What do we do now?


I was trying my best to silence the questions so I could listen to what his doctor was saying, but it was really hard to concentrate. I tuned back in when Alex started asking questions. Apparently the doctor had been giving us a list of basic things to watch in newborns. She was saying that we needed to go to the emergency room if his temperature ever was higher than 100.4 or lower than 97.6. Alex pointed out that when the nurse took James's vitals, his temperature was 97.5. Dr Wallace got out her thermometer and said we better double check his temp. This time it was 97.4. 


I was already a mess, but that is when the bad news really started spiraling out of control. After several minutes of trying to raise his temperature, it only continued to drop. We were told that the next step was to take him to the Cooks Children's emergency room, but that they didn't suggest that we take him ourselves. The ambulance was on its way to transport us. 


... Ok wait a minute... We just came here for a quick check up. Now we are leaving in an ambulance?! This can't be real... People have normal healthy babies everyday. What were we doing wrong? 


The transport team showed up. They checked his vitals again, and took him in the hall to load him into a warmer while Alex and I signed the first of many consent forms and gathered his things. I stepped out in the hall and saw him hooked up to several monitors and strapped into the warmer. It was hard to watch. How had we gone from having a happy healthy baby to this? 



Sometime during the trip to the hospital, it was decided that James would be admitted directly into the NICU. We were skipping the emergency room entirely. We spent the next several hours running tests and waiting on the results. They left no stone (or organ) un-turned. He was given an entire work up from head to toe, and they were checking specifically for Down Syndrome related complications. By that evening it was determined that he most likely had a disease called Hirschsprung's disease (a defect in his colon) and a hole between the left and right chambers of his heart. James was 4 days old, And it looked like he would be facing two major surgeries. 


The next morning we had a plan. We were going to start by fixing his colon. That surgery would take place within the next 48 hours. We were going to continue to monitor his heart, but ideally they wanted to wait until he was at least 4 months old to perform the procedure to close that hole. 


After a couple of days spent making sure that the Hirschsprung's diagnosis was correct and evaluating the extent of the problem, James had the surgery to fix his colon. The surgery went really well, and he is currently resting and recovering. If all goes well over the next 48-72 hours, he should be able to start feeding. 


Alex and I are extremely grateful for all of the love and support we have received so far. We still have a long way to go, but James is proving to be strong and resilient. 

We will do our best to keep this blog up to date with his condition for anyone that wants to follow along as we are introduced to our new reality. 



P.S. For any of you that are avid "googlers", like me, and want to do some research on James' condition, I highly suggest you start by using the resources on the Cooks Children's website. There are a lot of scary, non-factual websites out there.

19 comments:

  1. Lauren- You take after your very strong parents and have no shortage of bravery or resiliency yourself and surely your son has inherited it too! I pray that you and Alex draw closer together and seek God's guidance and comfort together in this most stressful of times. I am sad for the shock this has to have been for you.
    Thanks for setting this up to keep us updated. I'm thrilled at the birth of your sweet baby James and look forward to these updates as I know he has an amazing journey ahead of him. More photos when you can-- he's beautiful!! Love- Em.

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  2. I am incredibly proud of the way you and Alex met the challenge of this surprising news. Baby James is blessed to have been born into a loving, supporting family and extended family. I know you are strong, focused parents who will always advocate the best possible for the son you love.

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  3. We have been thinking and praying for you, Alex and James as you adjust to this new reality and will continue to pray for health and healing for all of you! Love, Sarah

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  4. Hi Lauren. While we haven't seen each other in y e a r s... I want you to know that my family will be saying prayers for you, James, and Alex. Glad he has already conquered his first surgery. All the best

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  5. Ben and I are thinking of you guys, and we cannot WAIT to meet the little man.

    xoxoxo

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  6. Your sweet family is in our thoughts and prayers. Your precious gift from God is perfect in every way. ♡

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  7. Oh Lauren! He's beautiful. Thank you for posting and sharing. My turn to follow your journey and I am grateful to be able to do so. Praying for you, Alex and sweet baby James.

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  8. Lauren and Alex, we are rooting and praying for that sweet baby boy!!! And for you as well!!! He will be surrounded by love!!!

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  9. Laura Van Winkle-PrestonJanuary 12, 2016 at 1:39 PM

    I'm proud of you for starting this journal; I believe it will help you deal with your emotions during this new journey in your life. Your parents and Michael will be with you every step of the way. :) Please let me know if there is anything I can do for you. I used to be a nurse in the NICU and James has a bright future. You are doing everything you should be doing! Love him and enjoy this wonderful newborn baby!

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  10. All my prayers are with you.

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  11. My prayers and love go out to you Lauren and Alex. Thanks for sharing this difficult journey you have found yourselves in. Please let me know if I can help with anything and the PEO"s are ready to help.
    Love, Abby

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  12. This is so new to me. All the info is so appreciated. I will not miss one update. Keep them coming. I love that precious little guy so much. Lauren and Alex, you will get through each day holding each other and James.

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  13. Dear Lauren and Alex...prayers have been lifted up for sweet James and for you and Alex. I have no doubt you both hold the strength and courage to master the needs that you will be facing in the days to come. We are looking forward to meeting James when he is ready and will be here for you ALL always. Our love...Bryan & Rebekha...xo

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  14. I ditto Shirly's comments and would like to add that you can always count on our support. 12th man effect!

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  15. Lauren and Alex, My admiration for you grows by leaps and bounds. Your boy is a beautiful baby. He couldn't ask for better parents. You are in my thoughts and prayers.

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  16. Teresa and Brent VarnerJanuary 13, 2016 at 1:59 PM

    I am counting the time when I get to meet sweet baby James! I know you and Alex are in a whirlwind of hospital and doctors right now, but we would love to come visit you when the time is right! Sending you all our love.

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  17. Sending our love and prayers

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  18. Lauren and Alex, Marianne, Scott, and especially baby James, we are all rooting for you! Sending up special prayers from afar in Michigan...

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  19. I am a little behind on this, and my heart just melted as I read through your journal. My prayers are with all of you and James has a very strong band of angels watching over him. hugs to all.

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