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Wednesday, July 21, 2010

Post #1

Wow, first I apologize for not getting this site set up sooner. Starting a blog was something Stacie and I discussed right after we found out, but it takes more time and energy than I had thought to sit down and spill your guts. We have been following a handful of other HLHS stories through this site, and they have been so informative and inspirational. Neither Stacie nor I have blogged, twittered or facebooked before, so why a blog now?
  • We needed a vehicle to communicate updates and share stories and pictures to our friends and family as we know this will be a long journey and there will be plenty of twists and turns.
  • We wanted a means to connect with other heart families going through similar diagnosis and stages.
  • We wanted to have a journal to look back & reflect, and perhaps one day share with Jonah.
  • There's probably a therapeutic element to blogging.

What is HLHS?

In infants born with HLHS (1 in every 4,000 or 0.025%) the left ventricle and the aorta are severely underdeveloped. The left ventricle is the lower-left chamber of the heart and is responsible for pumping oxygen-rich blood to the body. The aorta is the artery that receives oxygen-rich blood from the left ventricle and sends it through the body. When the left ventricle and the aorta are too small, they can't supply the body with enough blood. Although the babies are born looking completely healthy, HLHS is 100% fatal in the first week without surgery or heart transplantation.

Where are we at?

Stacie is 37 weeks and 5 days prego. All things considered, she's doing well. After a slight scare in mid-June, the doctors advised Stacie not to return to work (RN at Children's Memorial Hospital - Chicago). Since then she's been taking it easy, staying cool in the A/C, and getting a lot of rest. Her belly is big (in a good way :) and her feet and legs are sore, but overall she claims to have enjoyed the pregnancy. Now this strikes me as odd considering she vomited her way through the first half of the pregnancy, and lately she has been waking up in the middle of the night in shrieking pain with calf cramps.

Next Friday, July 30th, we will have a scheduled induction. This will trigger Stacie to go into labor, and we expect there will be nothing unusual about the labor and delivery process with the baby having HLHS. However, once Jonah is born, we will only be able to see/hold him for a short time before they will rush him to the NICU. In the NICU, they start a hormone called prostaglandin that helps regulate the blood flow. However, this medicine also causes respiratory distress, and thus requires the baby to be intubated until surgery. The Norwood procedure will occur sometime between day 3 and 5.

We are heading into next week with a mixture of excitement and fear. I'm sure this is a natural feeling for any expecting parents, but there is a known heart defect that is a matter of life and death. I had not heard of Hypoplastic Left Heart Syndrome (HLHS) prior to our diagnosis, but Stacie had and she knew all too well the seriousness of it when we were given the news. It was gut wrenching...physically and emotionally crippling to learn about what kind of heart our baby was given and what he would have to endure in order to have a chance at life. We will share our "diagnosis story" another time, but in a nutshell, we were given 3 choices.

  1. Terminate
  2. Compassionate Care
  3. A series of 3 operations known as the Norwood, Glenn and Fontan

Our decision was not easy, but in the end we found one of the top surgeons was right in our back yard: enter Dr. Ilbawi. To quote a recent documentary made about him:

"Michel Ilbawi, M.D., leads the pediatric heart surgical team at The Heart Institute for Children. Headquartered at Hope Children's Hospital in Oak Lawn, Illinois, they perform over 400 operations and care for more than 3,500 children with heart defects each year. With over 25 years experience as a pediatric heart surgeon and more than 20,000 surgeries performed, Dr. Ilbawi is nothing short of a miracle-worker to the families whose children he treats daily."
To learn more and see the trailer, go to (we saw a special screening at Hope and have a copy if anyone wants to borrow it)

When we went to first consult with Dr. Ilbawi, we hadn't made our decision. Within the first minutes of meeting him, he told Stacie he would take care of her and be her "brother" throughout the process. We knew he was skilled, but it was his calming demeanor and obvious compassion and devotion for these kids and families that resonated with us. After the consultation, we knew we had to give the man a chance to save our son's life.

What do we know about the 3 surgeries?

  • The 3-stage procedure is palliative (not a cure).
  • The child's circulation is made to work with only two of the heart's four chambers. In other words, the left half of the heart is bypassed all together.
  • The Norwood is performed within 3-5 days after birth.
  • The Glenn is performed at 3-6 months of age.
  • The Fontan is performed at 2-3 years of age.
  • The 3-stage procedure was developed in the early 1980's.
  • The earliest survivors are in their 20's, hence the long-term prognosis is unknown.
  • Advances in surgical and medical techniques are increasing the survival rates dramatically.
  • These operations are complex and will be adapted for each child.

Medically, the goals of the surgeries are:

  1. To create a new aorta that can carry enough blood out of the body and to connect this aorta to the right ventricle.
  2. To separate oxygen-rich blood from oxygen-poor blood by:

  • Directing oxygen-poor blood, which comes from the organs and tissues of your child's body, to blood vessels that go to their lungs, without going into their heart first. The blood then pics up oxygen in the lungs.
  • Allowing oxygen-rich blood, which comes from your child's lungs, to flow into their right ventricle. From there, it can be pumped to the rest of their body.

Ok, I think that is a good Post #1 and a good kick-off for this blog. Hopefully you find it helpful. We will do our best to keep everyone updated via this site and we welcome any comments. We recognize this blog does not start at Day 1 of our journey, so we will make an effort to share the diagnosis story and others that have led us to where we are at now. We know how much it helped to read other stories starting at the point of diagnosis.


  1. Hello Rob & Stacie...
    Although I/we (the Chepokas Family) have not seen you in quite some time I am so grateful you have included us in the mass email to inform us of your journey with your precious Jonah.
    Stacie, you had such a huge impact on our lives during our journey with Mitch, that to this day means so much to us. We miss you and you are on my mind quite often :) God gave you such a compasion for children and now God will give you and Rob exactly what you need for all that lay ahead.
    FYI, July 30th was Mitch's B-Day too (he would have been turning 17 this year)!!!
    I will keep you in my prayers.....
    God Bless,
    Becky Chepokas

  2. We love you guys and miss you terribly! Great job getting started. You will be in our thoughts, hearts, and prayers throughout the next weeks and months.

  3. Dear Rob and Stacie,

    What a wonderful site. It is exactly what is needed to help inform everyone about what is going on. You have done a beautiful job!!!
    Love you all and can't wait to meet your beautiful Jonah.
    Aunt Sue

  4. Stacie and Rob,
    Thank you so much for allowing us on your journey with baby Jonah (love the name!) It will be a roller coaster ride for sure but one thing I know; you will experience a love like no other. There is something about having a child that starts life with so many difficulties and is so vulnerable. All your instincts, your protectiveness, fight, determination, compassion, and unconditional love,will kick in a thousand percent. I also know that with The Great Physician guiding your great surgeon, miraculous things will happen.
    Always trust God. When you do he will lead you in the right direction. We do not have to understand His reasoning, we just have to trust Him and when we do He will take care of us. It may not always be what we prayed for but the big picture will be revealed to us in time.
    We love you guys and you will continue to be in our prayers. We cannot WAIT to see precious Jonah!
    Aunt Patty and Uncle Jim

  5. hi stacie and rob....what a beautiful baby boy you have...daddy's little caddy....our thoughts are constant, and our prayers are jonah is precious....i love you to the moon....aunt patty

  6. this is the last site i visit before i go to bed, and the first site i go to when i get up.....thank you for sharing your journey...i think i am the only one in the universe that does not text, so i would be hunting you all down by phone....lynn promises to teach sooo proud of baby jonah..he is a real champion, aunt patty b.

  7. was talking to grandma, and reading some of your blogs to her, and she asked me to write you a note... she of course sends her love, and is so proud of baby jonah...keep the, patty b. and grandma....kisses and hugs