Charlize was born June 24th 2007 a healthy baby girl, or so we thought, the pregnancy went extremely well, the labor went well and as far as we knew we were going home with another perfect addition to our family. On a routine check from the pediatrician before being released after birth, a heart murmur was discovered and for precautions they wrote us a consult for the Montreal Children's Hospital to ensure all was well with her heart. We assumed that all would be fine since both Mike and I have benign murmurs and though nothing more of it.
We were released and enjoyed 9 wonderful perfect days at home as a family. On her 9th day of life we met a cardiologist at the hospital; Charlize had an ultrasound and then an oxygen saturation test. Still in the dark as to why these were being done, we simply assumed it was routine and they were being thorough. It wasn't until the doctor sat us down and announced the earth shattering news of her congenital heart defect. More exactly they diagnosed her with Tetralogy of Fallot and announced that it would require a surgical intervention – open heart surgery. From her status at that point they assumed that by 6 months old they would operate to patch the holes and widen her valve. That moment opened up a new chapter in our book and it affected many lives. Over the course of 3 months hundreds if not thousands of people learned and took strength from Charlize. Such a young life already affecting so many people in so many ways, I couldn't be prouder of my baby girl. She came into this world with a task and from the moment she was born she was teaching.
This isn't the journal of what we went through, our story is scattered across our online journal, as well as our diary, however these are the photos of our lives for about a month. The months from July to September 2007 were by far the most difficult as well as most exhilarating months of our lives.
The photos below are posted not in a way to show anything off, but more in hopes that will help others who find themselves in a similar situation. Before Charlize's surgery a friend shared pictures of her daughter post open heart surgery and it really helped us prepare for what we were about to go through. I just hope that these photos will do the same for another family and we can pay forward everything we received. What's the use of going through such an ordeal when you can't help others after it?
Our first hospital stay began August 16th, 2007 when she was admitted for observation as she was having a frequent number of Tet Spells and they were becoming more severe. Considering she went from going to monthly checkups to deteriorating so rapidly made us question what was going on with her heart. To certify our stay and get a room upgrade she had a severe spell right in the arms of a cardiologist, so within 30 minutes of being in the ward, we were rushed up to ICU. We spent 4 full days in ICU and 2 on the ward and were subsequently released on a medication and with the knowledge that surgery would be the next week. The scenario quickly changed as we were no longer at 6 months for the surgery, but instead at 2 months.
So we were released and desperately tried (an impossible task may I add) to live a normal life for the next 9 days. This petrified me as we were sent home with a baby with a congenital heart defect that was deteriorating quickly according to my motherly instincts and radar. Here are a few pictures of those few days at home.
Finally the big day arrived, literally. On our 4th wedding anniversary, August 30th, we were up at 3am, prepared everything, bathed her in antiseptic soap, brought her in at 6am to be admitted and at 8:30am gave her to the anesthesiologists for her surgery. The morning was spent with my parents and sister waiting around for updates and news, lunch to celebrate our wedding day and try to make the time pass by while we knew our daughter heart was being fixed a few blocks away. By early afternoon we received the phone call that all was good. Meeting with the surgeon post-op he explained that it ended up being an extremely complicated and complex surgery as it wasn't necessarily Tetralogy of Fallot, but instead Double Outlet Right Ventricle that mimicked Tetralogy of Fallot. The most fantastic news though was that not only did he do a complete repair, but that her pulmonary valve was in good condition and thus he saved it! As a result she won't need future valve replacement surgeries! However with all the manipulation of the heart we were warned and told to prepare ourselves that she would most likely require a pacemaker since she had heart block. Within 2 days however in ICU, her heart began beating on its own, the block was gone! A few bumps in the road later and her heartbeat settled nicely and they announced that she would not require a pacemaker either. She apparently completely astounded the cardiology staff by her thorough and quick recovery. Finally only 12 days after her surgery Charlize was released from the hospital and we were able to start the healing process from the comfort of home.
We were fortunate not encounter many complications on the road to recovery, and we are happy to say that not even a month post-op and she is home and no longer on any medication. We have our baby girl back, the wonderful staff at the Montreal Children's Hospital did exactly what they told us, they would take her from us, fix her up and give her back all new and perfect.
First Hospital Stay Pre-Op
Second Hospital Stay Pre-Op
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Second Hospital Stay Post-Op
***Okay, I'll put a warning for graphic photos down below...Warning, some graphic photos down below*** Please note, I did not put the really explicit ones. It's one thing having pictures that reflect our lives during that time online, but personally the explicit pictures are for those who ask us for them. We will be happy to share those with you but they are private and this is not show and tell of my daughter at her most fragile.
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