Words You Love to Hear…

…from your 8-day old baby’s cardiovascular  surgeon:  everything went perfectly.

The doctors were able to do a complete fix of the transposition.  He is in the ICU recovering and so far doing well.  He’s still intubated and covered in a myriad of other tubes and monitor stickers (LG and I tried to count the lines going into him, but lost count), but he’s holding his own.  We’re so grateful to the doctors and most of all the amazing nurses at Children’s.  He’s still considered critical for the next 24 hours or so, but we’re definitely seeing the light at the end of the proverbial tunnel and can’t wait to take our healthy little boy home.


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.