Care4Conway: Conway is ONE!

Sunday, March 2, 2008

Conway is ONE!

Connie is officially one on March 3rd, but we celebrated his birthday on the 2nd. It was a beautiful day weather-wise and all around. Friends and family came from near and far to celebrate this miracle child. He was awake from 10:45am until around 5:30 pm. We tried to let him nap but I guess he was too excited for his big day. He was such a trooper. He let everyone hold him and he was a love bug all day. He sat on the floor and played while I opened the presents and didn't throw up one time on his birthday clothes! Finally after everyone was gone, he slept for about an hour and a half and then went to bed for the night at about 8:30.

I'm falling asleep as I post this, but I knew everyone would be anxious to see his birthday pics.

Here's a movie I made outlining his first year of life. What a year it has been!

Make photo slide shows at www.OneTrueMedia.com

9 comments:

Anonymous said...: Happy Birthday Conway! What an amazing video! It's so funny how when I was watching that, I was saying to myself, "Oh, I remember that picture or the posts when she was talking about that", like I was there. I don't even "know" you all, but reading about you all these months has been a true blessing for me. Thank you so much. Kennedy (my March baby) wishes Conway a happy birthday too.

:o) Stacie Kuhlman; March 3, 2008 at 12:41 AM
Anonymous said...: Happy Birthday to you
Happy Birthday to you
Happy Birthday dear Conway
Happy Birthday to you!

Soo happy to hear that his party went well, what a celebration of God's Blessing! I hope you have a wonderful day, can't believe it was a year ago that you were calling with the exciting news of his birth - my how time flies...

Love, Caryn Adam and Claire; March 3, 2008 at 7:14 AM
H. James said...: Happy Birthday, Conway!
So great to see you looking well with lots of smiles. We're hoping year number 2 brings a lot more smiles & laughter (and few surprises).
Bailey will celebrate her 2nd birthday on March 9 and unless we have some unexpected bumps, she will do so at HOME!
Enjoy your special day!
-Heather, Tim & Bailey James; March 3, 2008 at 1:16 PM
Anonymous said...: Conway, I can't believe you are one today! Happy birthday. I was watching that video and it was amazing to me! Hope to see you soon! Tell Mary Kathleen I said hi!

Love,
Lindsey Schweppe; March 3, 2008 at 3:02 PM
Anonymous said...: WOW, what a piece of art! The video is beautiful Erin.I look at all the different paths and roads you have traveled and I am amazed at your strength and courage. I see how much stronger you have become. You and Conway are both an inspiration for others.
Happy Birthday Conway!
Sincerely,
Michele Reigh; March 3, 2008 at 4:17 PM
Kim Froehlich said...: Happy Birthday Connie!

My, what a year you have had!! You are such a big boy now and so full of smiles!

Erin & Greg, it is amazing the transformation Connie has gone through. Seeing your postings lately, it almost makes you forget what he has overcome!

What a brave little boy Connie is and how blessed you all are! My prayers continue for him to get stronger every day!

Awesome job on the video too!!! Thanks for sharing Connie's special 1st Birthday!

Love Kim Froehlich; March 3, 2008 at 5:41 PM
Anonymous said...: I was in tears watching that video, what a journey your whole family has been through in such a short time! God Bless you all and Happy Birthday Connie =); March 4, 2008 at 10:31 AM
Anonymous said...: Happy First Birthday Conway!!!
You are the most amazing little boy and I am so happy that you are doing so well. Watch out world because Conway is coming!; March 4, 2008 at 12:14 PM
Anonymous said...: Happy Birthday Connie!

I can't believe he has turned 1 already! I am so happy to hear the party went well and that you had a great day!

Love,
Keith, Jennifer, Hannah, and Katie; March 4, 2008 at 2:19 PM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.