My three beautiful boys

My three beautiful boys
August 2010

Conner's Story

The following is a note I posted on my Facebook page on June 7, 2010.  The day before Conner's chest was closed after being open for 4 days.  I will add to it on the bottom... 

Conner Josiah Lewellen was born on June 1, 2010 at 10:05pm via Emergency C-Section. Conners heart kept deceling during labor and the last time it deceled his heart just did not bounce back they way it was suppose to. So they rushed me to the operating room. Conner was 10lbs 7oz and 21 inches long. All was well until I was about to nurse him a second time. Because of his weight the nurse had to check his glucose levels just before I was to nurse him. She lifted him out of my arms which completely upset him he turned brighted red while he was crying... then she poked his foot and he cried even harder at this point he is turning a deep blue. I said to the nurse "He shouldnt be that color, what is wrong with him" She said "Oh he is just holding his breath" I said " No he isnt whats wrong with him" She said she could check his oxygen levels and not to worry because he is probably just mad and holding his breath. Well his levels were at 62 and they should have been in the low 90's. They get him started on oxygen which didnt work they called in the NICU nurse and she said " I hear a heart murmur, I think he has a heart problem we need to get him down to the NICU right away" within 5 minutes Im all alone in my hospital room completely helpless and crying out of control. My doctor and husband come up about an hour or so later telling me he has to go to Childrens Hospital because the doctors think that Conner has Tetralogy of fellot. They explained to me what it was but I was so upset I couldnt retain any of the information. Well at Childrens Conner was diagnosed with "Transposition of the grand arteries" this is where the Pulmonary Artery and the Aorta are are connected to the wrong areas. 

Today Conner is 5 days old and has 3 heart surgeries. Two of which were to make repairs and one was for exploratory surgery. They had to leave his chest open and covered. Conner as of right now is doing pretty good. Please keep him in all your prayers.

Today, is October 31, 2011...and WOW has Conner been through alot.  Let me clarify Conner's diagnosis.  He has Transposition of the Great Arteries, Ventricular Septal Defect, and Pulmonary Stenosis. Day 2 of life early in the morning he was transferred to Seattle Children's Hospital I stayed at the hospital where he was born because of my C section.  Day 3 of life (June 3)They place a BT shunt (Blaklock- Taussig Shunt) in his heart.  Later in the evening it clotted with protein and he declined extremely fast... they rushed him to cath lab and where they learned he needed his shunt revised, to the OR he went. They opened him back up removed the shunt and put in another one. June 4, I was finally able to go to Children's hospital and be with Conner, as I was being wheeled in,  His room was full of doctors looking at the monitor shaking their heads....he was declining and they had to turn his ICU room into an operating room. I went to his bedside and said "Mommy is here now, I love you... you stay strong"  they had us leave the room. I left and did what I thought would help him.  I pumped in the breast pump room.  I didn't know what else to do and I wasn't giving up on my baby.  Then the wait began... soon the surgeon came out and told us what was going on.  Conner had fluid around his heart and left lung, they had to do 10 seconds of message on his heart, they said that they did that mainly to get medicine moving around faster.  The surgeon told me that "IF Conner makes it through these next few days" I, interrupted him and said "NO not IF... WHEN"  he continued "If Conner"  I said "No not IF WHEN! DO NOT GIVE MY BABY THAT OPTION" Apparently I lunged at Dr. Cohen.  He said "WHEN Conner makes it"  (Sorry about that Dr Cohen... my brain was floating about a thousand feet above my head for the first year of Conner's life) Well after that day, the healing finally began... they had to leave his chest open for I believe 4 days... His chest was closed on June 8, 2011.  We were finally able to bring our baby home on June 30, 2010. He was on some medicine about 9 I believe and he was fed through a feeding tube in his nose... but we were FINALLY able to bring him home.  Beginning in August 2010 Conner started having issues with Ectopic Atrial Tachycardia the first episode his heart rate reached 314 beats per minute.   We believe that he may have outgrown that problem....  Conner spent the first 10 months of his life in and out of the hospital. On January 25, 2011 Conner had the Rastelli Procedure which briefly, is when they remove the Pulmonary artery and replace it with a conduit... in Conner's case he has a cow jugular (hence the cool cow pattern here lol) Five days after surgery on January 30, 2011 Conner became septic, without any warning too.  He went into septic shock. I will spare you the details of that very traumatic morning, But he almost died.  His oxygen saturation was 30 (should be 100) and dropping... and his heart rate was 40 (at that age it was suppose to be around 120)  and dropping. He was grey.  It was awful.  Every organ was hit.  EXCEPT HIS HEART!!! His spleen, his kidneys, his liver were all hit.... he had a minor stroke and a subdural hematoma, his lungs were also hit and he went into respiratory distress... his lungs took the longest to heal.  His was finally discharged on April 5 2011... and now today you would NEVER know he ever was so sick... He will have to have conduit replacements, which requires them to stop his heart and put him on bypass... people say that conduit replacements are nothin... but I'm not sure I agree, its scary but I have a good feeling that he will live a long healthy life! They say that he is cognitively advanced and the only real delay that he has is that he is 17 months old on not walking without assistance... BUT he took about 3 steps today!!! And 4 yesterday! So thats good!  Oh I forgot to add that I was able to wean him off his feeding tube and we pulled it on June 27, 2011!  It was a great day!  He is only on one heart medicine too!  Currently they are watching his right ventricular pressure because it is a bit more elevated than they would like and he has tricuspid regurgitation... they said that MAYBE one day later on in life he might have to have a heart transplant because of the pressures in his right ventricle.  My gut says that wont need to happen though.  His next cardiac appointment is in January he will have an complete work up then.... 

Well thats all for now... I will update as the days go by... 

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