chd awarness

When Conner was born...
I had a pretty uneventful pregnancy, though in my gut I felt something was wrong... At my 18 week ultrasound they "couldnt see the entire pulmonary artery" they told me to come back in two weeks to double check that his heart was okay. Well two weeks later they told me his heart looked great... I carried on with my pregnancy doing the normal pregnancy things preparing his nursery, choosing names, baby shower the whole nine yards. I have two older boys Leo my hero who is 8 years old and Alex my strength who is 5 years old, so they painted pictures on canvas' for their baby brothers room and talked to my tummy all the time. Fast forward to June 1, 2010 I was induced at 8:45am and NOTHING happened. Small contractions but that was about it, they broke my water and still nothing but small contractions. I wasnt dialating or anything. His heartrate kept dropping with small contractions at 9:30pm that night I started praying really hard and kept saying "Please God just get my baby here safely" I said that over and over and over again thats when his heart rate dropped and wouldnt come back up... that was Gods message to the doctors that this baby needed to be born by C-Section. My son was born at 10:05pm he weighed 10lbs 7oz and was 21inches long. I still knew something was wrong... but couldnt put my finger on it. At 11pm I nursed him for the first time and he nursed for 45minutes! That was the one and only time I ever nursed him... since Conner was so big at birth they wanted to check his blood glucose levels. At 1am the nurse came in to check his glucose levels before I nursed him a second time... when she poked his heal he turned purple... Im talkin a deep plum purple. I kept saying "Something is wrong, something is wrong with him" The nurse said "no no, he is fine" I kept arguing with her and FINALLY she said "I can check his oxygen saturation levels but be prepared they will be in the low 90s since he was just born" I said "Okay" well his O2 levels were at 62. She called a few people they tried oxygen and the oxygen on his wall wasnt working (or so they thought) so I ripped my nasal canula out and said "HERE!!! Give him MINE!" Apparently I was desatting as well... so they told me to take a few deep breathes... so I did and gave it to them... at that point his O2 levels still werent going up. They called the NICU the nurse came up listened to his heart and said "I hear a heart murmur, I think there is something wrong with his heart" My husband went with Conner to the NICU. There they did tests and xrays. Soon my husband and doctor came back into my room and told me that Conner had to be taken to Childrens Hospital and will have to have surgery. I had a C-Section so I had to stay put. I didnt see Conner again until June 4, 2010. I didnt sleep and couldnt eat all, I did was cry. Conner was diagnosed with d-Transposition of the great arteries (his aorta and pulmonary artery are switched), ventricular septal defect (a hole in the bottom chambers of his heart) and pulmonary stenosis (a narrowing of his main pulmonary artery) On June 2, 2010 Conner had surgery, they placed a BT shunt. Late that night it clotted and they had to revise it in the wee hours of June 3, 2010 and on June 4, 2010 his vitals signs started plummeting... they had to open him up in his ICU bed. He had fluid around his heart and right lung. They had to do 10 seconds of chest compressions mainly to get the medicine pumping around in his body better... however it is listed in his charts that he went into Cardiac Arrest. Once Conner knew I was with him and I quote "he went straight into recovery mode" We took Conner home on June 30, 2010.

We were back in the hospital I believe on July 8, 2010 and on July 12, 2010 due to an infection on his incision ( I believe it was caused by the zipper on his jammies...) SOOO Heart parents, no zipper jammies until at least 8 weeks post op... (they dont tell you these things). Some Keflex fixed that problem right up.

In August 2010... Conner started having Ectopic Atrial Tachycardia...Essentially this is when his heart rate jumps all over the place... it can be sitting at 120 and then suddenly 170, 150, 190, 200, 180, 220, and the highest his heart rate has ever been is 314 beats per minute. This has been our main battle most recently.

On January 25, 2011 (10 days from today) Conner will have the Nikaidoh procedure which will be a full repair on his heart. They are uncertain if this will correct his Atrial Tachycardia. They tell us that he will likely have lots of rhythm problems during and after surgery. Please keep our sweet little boys (All three of them) in your prayers and I will update as often as possible...

Leo he was born May 31... he is a great big brother! He is heart healthy but has recently been diagnosed with ADHD so he has some problems with focusing and hyperactivity but he is doing much better now then ever! He LOVES to draw, play games, skate and climb trees! He is very creative! He is my hero...

Alex was born December 6 and he is also a great big brother! He has recently been having stomach issues and suffers from headaches and allergies but otherwise healthy! He is a pleaser he LOVES to make people laugh and is very effectionate and caring... he is my strength.... he makes me laugh!

I thank my heart mom friends and my husband for all the strength they have given me...

With some missing pieces here and there this is our story up til now,
So instead of having th Nikidoe preocedure he had to have the Rastelli, which means he will have to have surgeries every 3-5 years as he grows. My wife already had to quite her job to take care of conner full time. I am a military veteran and purple heart recipitant. We've lost our house already to forclosure.

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jessica says ... on Sunday, Feb 27 at 9:12 PM

cont. he o2 sats went into the the 30s he had a minor stroke and a subderal hematoma. Every organ in his body was effected by the septic shock. He is recovering and doing much better...

Jessica says ... on Sunday, Feb 27 at 9:11 PM

Brenda, they also thought this was TOF, but it isnt... he doesnt have the thickening of the wall of his heart... The same day that my husband posted this our son almost died. He went into septic shock with heart rate down into the 40s

Jessica says ... on Sunday, Feb 27 at 9:03 PM

I wish I would have had you as the ultrasound tech! :) I had 10 ultrasounds and they never caught it...

Brenda says ... on Monday, Jan 31 at 12:15 AM

This sounds like Tetrology of Fallot. It is likely that it was missed because of Conner's position in the uterus. I am an ultrasound tech, and we look at the heart, including the outflow tracts very carefully. So sorry for your family, and praying.

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