Momma Times 3, Down Syndrome and Heart Surgery

Momma Times 3, Down Syndrome, and Heart Surgery

 Well, I have sat down several times to write this post.  In the last six months my life has changed... a lot.    Not just the fact that we became the proud parents of our third beautiful little girl, but we have grown closer as a family, and I have come to appreciate the value of friendship more than ever before.  April 23, 2012, marks the beginning, the day Lucy joined our family.  Here is a picture of the two of us, we finally get to meet after 9 1/2 months.

 She was precious all 6 lbs. and 11 oz. of her!  But, having two other daughters before, I knew there was something about Lucy that was different, for that lack of a better word.  It didn't take long for that suspicion to spread to doctors and nurses.  While I could hear lots of talk, mostly about random things like brushfield markings and such, I couldn't concentrate fully because I was recovering from, well ...delivery!  No drugs, so I felt every bit of the pain.  Family came, we all passed our sweet girl around and took a thousand pictures.  After a couple hours went by, things settled and I told my husband to go have dinner with his family, who came from Colorado.  I was going to enjoy some quiet time and have some much needed rest.  A dear friend of mine stayed with me, thank goodness for her!  She noticed in my sleep that I was uncomfortable and in pain.  After lots of asking for the nurse to check on me, they finally did.  I was hemorrhaging.  I was given a handful of shots over the next couple of hours, plus medicine by mouth that didn't seem to have an effect.  All the while, Lucy at the same time, began having trouble with oxygen stats.  My poor husband left and while there was concern for Lucy, he was returning to a horrible situation.  Mother and daughter in "trouble".  There was talk of star flight for Lucy, but ultimately they decided that with what was going on with me, it was better to wait.  Hours went by and they finally stopped my bleeding in the wee hours of the night.  But, still no sleep, as those medicines have horrible side effects.  We stayed at the hospital for 5 days and then, transfered to Austin's St. Davids NICU.  It was confirmed that Lucy had trisomy 21, and also a heart defect.  It would require surgery.  After 30 days we were released.

Big sisters Savanna and Ellie adore their little sister! 

We were sent home with an NG feeding tube and a job to fatten up our wee little one.  The bigger she could be before surgery, the better.  Fifteen pounds was the goal.  She made it to just a little over 13 lbs., when they decided it was time for Lucy to have surgery.  I have never been so scared in all my life.  As any parent knows, we don't want our children to suffer, EVER!  

Best husband and father!!

Lucy was the second case of the day.  We were told that her surgery prep would start around 11, depending on the first surgery.  It was 2 p.m. before they took her from us.  We were surrounded by family and friends. The following is a facebook post from my husband to describe the first day, surgery and post-surgery. 

Thank you to all who have been praying for our Lucy, and for being patient for information. Here is a little summary of her past 24 hours

This time last night, Lucy was being moved from the operating room to the ICU. Thirty minutes before that, I shared a quick hug with a fellow non-hugger in what should've been kept to a handshake, retrospectively. This was D

 r. Kenneth Fox, the cardiothoracic surgeon* who patched up and sewed Lucy's heart. He had just closed up and had come to tell us that while Lucy's procedure offered some anatomical challenges, forcing the game into overtime, she was given a repair that he his team felt very good about. His creative stitch-work revealed another small hole that might've otherwise been missed, slowing her recovery some. Most importantly: No reason to suspect future surgery -- We truly heard the best news he could've given us at that moment. (* This is what I want to be when I grow up)

The first 12 hours after heart surgery are thorny for a variety of reasons, but Lucy came through with straight A's. Boring is what you hope during recovery, and I'm happy to report that Lucy has been reeeeeally boring up to this point, excluding the last hour and a half: Minutes after her sedation was cut back, eyes were opening, grunting was heard, vent-tube was extricated, and our girl was breathing on her own. Minutes after that she shared some idle chatter on the phone with her sisters at home, who assured her that they weren't touching any of her stuff.

At every turn, we've heard the best possible news from Doctors and staff. Lucy is right where she should be in her recovery -- we cannot put into words the indebtedness we feel to your for your constant prayer and support, or how fortunate we feel to have you all on our team. We'll continue to update you on Lucy's progress.

Thanks be to God

This is the morning following surgery.  Just looking at this picture brings back the horrible feeling you get, seeing your child go through something so traumatic.  Your instinct is to hold and comfort, but you can't.  You feel helpless.  But, you pray, and you hear positive things from doctors and nurses and you get through one day.  Then you start to see the positive things for yourself and it helps.  This video is moments after they stopped sedation and took out the ventilator.  This is when I knew she was going to be just fine!

We are now only 2 days shy of 6 weeks post op, and she is doing fabulous!  Enjoying precious time with her before it is time for me to return to work.  What I've learned through this...it's all perspective!  It is easy to feel sorry for yourself, don't!  You may have it bad, but somewhere someone has it worse.  We learned that right off, where we meet a woman in the NICU, who had to decide whether or not she should shut off the ventilator for her son who was only 3 weeks old.  Today, I met a woman and her son.  Her son was born with half of a heart, they have been through 4 heart surgeries, and more to come.  I am thankful for family, how does anyone get through the tough stuff without them!  Thank goodness for friends, even those you haven't seen or spoken to in years.  I am also thankful for friends from work and church, they bring you food!!  (and pray for you, and give you gift cards and beautiful notes with hopeful words!)  And even strangers, who you meet, they ask what is the purpose of the tube that is hanging out of your kids nose, and they tell you they are praying for you!  And last, I am thankful to God for all the blessings he has bestowed on me and my family, God is good!

Lucy as Pink Sock Monkey for Halloween 2012