Off One Rollercoaster…On to Another

Despite my infrequent postings, some of you have continued to show your support, which is so amazing to me.  Thank you for that.

On to the news…our son was born on March 3 at 2:19 am.  He was 6 lbs 2 oz, but we didn’t get a length as immediate medical intervention was required for him, but I’m getting ahead of myself…

I’ll try to come back and post the birth story later, but here’s the quick version:

  • Induced due to low amniotic fluid
  • Fetal distress with contractions at only 5 centimeters
  • Rushed into a surgery at 1am in the morning – baby out quickly and safely
  • Found a suspicious lesion on my remaining ovary after removing the baby
  • Kept me open on the table for nearly 2 hours waiting for a pathology consult who never came because apparently they don’t work at night
  • Took a biopsy to send for a full workup and finally closed me up.
  • Learned 2 days later with great relief that the growth was benign

Now, onto the story of the Boy (still coming up with an alias for him).  Because of his heart condition, the NICU resuscitation team was on hand for the delivery.  They immediately took him to another room when he was delivered – neither LG nor myself got to see him.  They worked him up in the NICU of the hospital where I delivered, and initially he seemed very stable.  They were going to bring him to see me before he transferred to Children’s, but once they gave him the drug to keep his patent ductus open to allow for mixing of the blood, he stopped breathing.  They were able to quickly stabilize but felt they needed to transfer right away, so as a result I didn’t get to see him before he and my husband rushed across town in an ambulance.

When he got to the Children’s NICU, he had stabilized and his oxygen saturations and blood gases were quite good.  They did a detailed echocardiogram and to our great relief they did not find any other cardiac or lung issues beyond the transposition and the VSD’s we already knew about.

I finally got out of the hospital on Saturday (3.5 days after his birth) and went straight to the hospital to see him.  What a little peanut. At that point, he definitely had his share of tubes, which was an initial shock, but little did I know…  He did great for a couple of days and then on Saturday night, he started to go downhill.  They decided to do a catheterization procedure in which they go up through a vessel in his groin to his heart and they create another hold between the atria to create another path for blood to mix.  As a result, he was put on a breathing tube.  From there, things got kind of screwy in terms of other systems and it was a rough day or so.  The tubes multiplied before our eyes until it got to the point where we could barely see our son.  The only place we could touch was his feet – and only those because they couldn’t get any tubes into them because he was retaining so much water.  We got him baptized on Monday, which brought us a sense of peace.  By Tuesday, things had steadied again and they took his tube out and he finally opened his eyes for a bit!

His surgery was scheduled for today, but late last night, a heart became available for a child in need of a transplant so that procedure took priority and bumped our little guy off the schedule.  We were certainly disappointed as it had been an emotional day preparing for the surgery, but in the grand scheme of things we realized the bigger picture – that while were disappointed and definitely want our son to get surgery before there’s a chance his condition could worsen, that another family’s world came crashing down around them last night at the loss of their child and the family of the child receiving the heart was receiving an incredible gift of hope.

We’re headed over the hospital in a bit to see our Boy, but wanted to capture to try to capture these early moments here.

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13 Responses

  1. Please know that your son, you and your husband will be in my prayers.

    Allison

  2. Callie I’m keeping your litle family in my thoughts every day. Thankyou for the update, I am so glad to know your little man arrived safe and I’m sending all my love and positivity for the coming surgery for your little one, I hope it is rescheduled quickly and he gets better every day.

  3. thinking loads about you right now, callie. you’re so strong.

    xoxo

  4. You, your husband, and your infant son are all in my prayers. I hope the surgery goes smoothly and takes place very soon, and that thoughts of these early days will soon fade behind a healthy and happy life together with your little one.

  5. Congrats! Sending good vibes for the surgery. It’s amazing what doctors can do now. Take care of yourself – you won’t be able to visit the Boy in the NICU if you get sick.

    take more pictures!

  6. Congratulations on his birth. I’m glad that he’s getting great care from doctors who are experienced with such tiny patients.

    Thinking of all of you.

  7. I’m praying for your little boy.

    I had open heart surgery (at 7 mths) myself.

    Congrats on his arrival. Hang in there.

  8. Congrats on his birth! Hope the surgery goes well.

    Saw the message on the LFCA. You are in my prayers. My nephew had heart surgery at three days old for a similar problems: transposition of the great arteries and an atrial septal defect. He is one now and doing well. The heart surgery looks like it will be a lifelong fix. If you would like to know more you can e-mail me.

  9. Wow so scary. I am praying for your family.

  10. Callie – I am constantly thinking of you and the boy.. (Wallnug?)

    I am so happy that what they thought they saw in YOU is not a problem. You need to focus your attention on your little one.

    This time must be so hard. But you are doing it, you are getting through this with grace, I can tell.

    It’s always nice to hear/read that some other baby/child was more urgent than yours, when his surgery had to be postponed. SMALL consolation, I know.. but your baby is not the most urgent one in the hospital.

    Let us know when the surgery is.. I’m glad you did the baptism. I will pray for you guys. I have heard so many wonderful success stories of heart patients, and I beleive your boy will be one of those, too!

  11. What a rough road. Hoping that all is well with the boy and the op goes well and you get to take you healthy boy home with you real soon.

  12. You and your tiny one are in my thoughts.

  13. hey Callie I’m over from LFCA and wanted to wish you and the boy and the dad and everyone with you the very best. you’re in my thoughts though I don’t know you, I care and hope and wish for you, with you for a great outcome of surgery and a normal life to start soon without the need of tubes.

    hugs
    Ines

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