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Thursday, July 29, 2010

From the Beginning...

Before moving on to tomorrow when we begin a whole new chapter of this story, Rob and I feel it is so important to share with you how we have come to this point, to tell our "diagnosis story". Also, by doing this Rob and I are reminded of the good decisions that we feel we have made so far and it makes facing the unknown a little easier to rest with.  
To tell you only how Jonah was diagnosed with HLHS would just be part of the story. So much happened before that which validates for us that we have never (and never will be) in control of this situation. Here's a brief look at the year 2010 so far...

January- First move from Minneapolis to the Chicagoland area, Rob started his new job Jan. 4th, I started at Children's Memorial (as an RN) on Jan.25th. Temporarily stayed at my grandma's house after she moved out; commuting by train from Joliet to downtown Chicago. Worst part: getting off work at 5pm and not getting back until 8pm. Best part: living next door to my sister, brother-in-law, and adorable niece Nola; and 15min from my parents. Sasha was living the best life ever too with having Lily to hang out with all day!

February thru March- Began the hunt for a new house. Closed on our house in MPLS on Mar. 30th and drove back with the rest of our belongings-2nd move. Now this is where it gets interesting...we were supposed to have our 20wk u/s on the morning of Mar. 26th and from there drive up to MN. The OB office calls to cancel. We then go on our merry way after rescheduling the appt. for the next available date.

April- The u/s is all set for April 3rd...a Saturday, in the main radiology department of the hospital (which we now understand was not the best plan because this department is not specialized enough for OB). Honestly, this was the worst day of our lives. The worst experience of our lives. Going into the u/s we knew what to expect, what to look for and what questions to ask. It started out just fine, but quickly got very awkward and tense as the technician's demeanor completely changed. She saw something. Something wrong. We were able to pick up on this and began firing some pretty loaded questions. She is not able to give us any specific information, but above many other things says "Don't worry, we have an excellent Perinatologist team here". Rob and I look at each other and wonder why the heck she is saying this to us!!! If there is nothing to be concerned about, as she was attempting to make us feel, then why do we even need to know this? We leave wtih absolutely no info, didn't talk with a doctor, and had to wait until Monday to get results. Happy Easter.
After all of this, the sex of this baby was the last thing on our minds. We were planning a fun way to discover this big anouncement. Now completely lost, we saved the u/s photo, the "proof", and opened it with my family while coloring Easter eggs. IT'S A BOY!!

Finally Monday, my OB calls me  at work and tells me he is not able to visualize 4 chambers of the heart and that we must get a Level II u/s asap. The next day, Tuesday, April 6th we get the devestating, take-your-breath-away news that our little boy has Hypoplastic Left Heart Syndrome. Wednesday, April 7th we close on our new house in Downers Grove.

May- May 1st we were able to move into our new house in the very family-friendly village of Downers Grove.  May 7th we met the man who can fix Jonah's heart. That is of course, Dr. Michel Ilbawi. Rob has previously mentioned how skilled and capable Dr. Ilbawi is, but I want to also mention what an incredible human being he is!! I literally could go on and on about this:) But, the link we previously attached gives you a quick glimpse.

May through present- Taking it one day at a time. What else could we do? Everything, and I mean everything, is to be determined on what Jonah presents us with when he enters this world. All we can do is lean on the support of our family and friends while continuing to look to God for His glory in all of this . We relish in the moments of excitement when we can, get angry and frustrated as we feel so out of control, and shed very private tears and talk about all of the "what if's" while doing the simple things we taking Sasha for a walk.  :)

Before wrapping this up, we should go back to the mention our other two options: termination and compassionate care.  When the diagnosis was initially made, we had a week to decide AND act if wished for a legal termination in the state of Illinois. While having agonizing conversations about the ramifications of termination and compassionate care, a series of events took place that left quite an impact on us. Part of that was finally feeling Jonah move for the first time. Within a very short time, I became somewhat disconnected from this pregnancy. But actually feeling the miracle of begin building a bond...we could not deny that fact that Jonah was knocking on our heart's door, letting us know he was up for the fight. 


  1. The blessing of your new little Jonah will warm your hearts and calm your minds and that's when you will realize nothing else matters besides your new family...My thoughts and prayers are with you as you embark on the newest chapter of your lives.

    And another quick prayer for an easy and fast labor/delivery! Take care.

  2. Stacie and Rob, we are sending you prayers and positive thoughts from Minneapolis. Stacie, you took such amazing care of Liz when she was sick, we know Jonah couldn't have a better mother. And Rob, we are certain that you are also the best dad Jonah could have waiting to hold him and get him through difficult times. Much love from Greg, Connie, Liz and Michael Kaiser