Friday, March 4, 2011

Things we take for granted

As a first time parent to a healthy baby girl and then a second time parent to a CHD baby boy with HLHS, I realized that there are a lot of things I took for granted with my first child. I tried to be the best parent and give my child the best of everything I was extatic to be a parent yet was naive and had no idea how truly blessed we were to have her. We did all the normal baby things with her and did our share of complaining about the routine mundane sometimes icky things we had to do. If a CHD child is your first you probably don't know any different, however if he is your second here are the things I and many parents of perfectly healthy children take for granted. 

  • Holding your babies - I got to hold Jasiu when he was 3 days old and assisted by 3 nurses and only for one hour
  • Changing diapers - Jas is a week old and I have yet to change a diaper
  • Feeding- his stomach has yet to get a drop of real food - should be able to get 3mls of breastmilk tomorrow
  • Crying - I have only heard him cry once when he was born and then "heard" the silent cry which made me physically sick - I felt his pain and could not hear a peep.
  • Having your baby gaze into your eyes - Jas opened his eyes yesterday for a few minutes and a few times today - it was wonderful
  • Showing off your baby to friends and family - only closest relatives were allowed to see him, one at a time and after 3 minutes of scrubbing their hands up to thier elbows and some wearing face masks
  • Sibbling rivalry/ adjustment - Every time I come home from the hospital Emily asks me if her baby brother is with me or when she can see him
  • Supportive and hands on spouse - I don't think I could do this without my husband and someone to lean on, wipe my tears and join me on this journey on such a personal level.

I could go on and on, but I won't.  It sucks but there are worse things that can happen. I promissed myself I will not dwell on the bad but rather be greatful for the good.

I'm greatful for many things for our situation like:
  • We live only 6 miles away from one of the best hospitals in the region that have one of the highest success rates in the country for CHD's
  • We have one of the best surgeons along with his surgical team that performs the most complex procedures and is one of the most compassionate people I know
  • We have a unit PSHU (Pediatric Surgery Heart Unit) that specializes only in children's heart surgeries and has the best nursing staff who only care for cardiac surgery intensive care patients.
  • Our son was born a very healthy weight at 8 pounds and was ready for surgery on day 4
  • We have the support and help from family and friends to take care of our daughter our home and us as well.
  • We have a beautiful older sister who can't wait to meet her brother
  • We have eachother (My wonderful husband is so supportive I can't imagine going through this without him) Also - Happy Birthday to him today.
  • A wonderful network of other heart moms who know exactly what we are going thorugh and are willing to share and support each other. I want to help other moms just like they helped me. It's a tough path to walk on.
For a quick update on John - HE GOT HIS CHEST CLOSED today ! Good sign for him. He will start feedings tomorrow a little at a time through the NG tube. He's finally tolerating being suctioned (getting mucus and such from his lungs) without being bagged and sats dropping. Now that the chest is closed he can lay on his sides and he's toletating handling really well. He's also more alert and is opening his eyes, wiggling his feet and grabbing on to our fingers when the pulse ox machine is not on his hands.  Let's hope he has a good weekend and than they will try to extubate (remove his breathing tube) on Monday. We will listen to John, as he is guiding his own path and letting us know with his sats and lab results when he's ready for things he likes to go his own pace so we won't rush him, as long as hes moving forward.  As they say - Slow and steady wins the race !


  1. I have been following your blog for a bit now. This post could not be worded any better. We have our 3 year old heart healthy daughter, and then had Caleb with HLHS. He lived 3 days. Your world is so completely changed. While the biggest worry of other pregnant moms was colors of the nursery, ours was the fear and unknown that heart defects brought to us. So glad to hear he is doing ok. :)

  2. Hello Kathy & Joe!
    We are thrilled to hear of John's successful chest closure. That really is such an exciting turning point. His recovery so far reminds me of Jonah's at this point. You are right about the many things written above and we are celebrating all of the good things along with you! John is in such capable, loving hands there & the slow, steady philosophy really makes these kiddos happy...although it can be agonizing for mom & dad. It was wonderful meeting Joe yesterday (Happy belated Birthday)! I know you & I will soon meet as well, but won't it be amazing when Jonah & John get their first look at each other!?! Awesome!
    Hang in there!
    Rob, Stacie, and Jonah