Lots of you know that Maccoy was in the NICU after birth due to an apnea (quit breathing) spell that he had around 5p.m. on sat. July 4th about 3.5 hours after birth. It is normal for them to keep babies that have an apnea episode in the NICU for 5 to 7 days to make sure they don't have a another and to find the cause such as infection or a brain bleed. Fortunately for Maccoy all of his tests came back fine so there wasn't a cause it was just a innocent episode. While he was in the NICU he was found to have a heart murmr and since it was really loud they decided to have him evaluated by a Pediatric Cardiologist on Sunday the 5th. That day will forever be etched in my head as the day my heartbroke. The cardiologist came in to explain to us that our 1 day old sweet baby has a Congenital Heart Defect called Tetralogy of Fallot that will require him to have open heart surgery to repair it. We have since been on to Children's Mercy for a 2nd opinion and will stick with the Dr. there. We have been told that Maccoy has a "Moderate" case.. We hope to make it to at least 6 months before the repair. The bigger he is the better the surgery. It will be a long surgery approx. 6 to 8 hours and will require the use of bypass and a stay in the ICU. Clint and I are scared to think of that day but also anxious to get it here and behind us and have our little guys heart fixed. He is currently on a oxcimeter which tells us his O2 Saturation level (oxygen in his blood) he sits between 95 and 100 % which is normal/great and when this number starts to go down and gets in the 80s we will know it is almost time for his surgery. We also have been watching his weight gain very close because babies with TET don't grow as well. He is a very tired little guy it takes him awhile to eat and crying episodes wear him out easily. Other than his heart he is a healthy SWEET baby.Here is a quick overview of what TET is....
What It Is (From the American Heart Association)Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important. Also, the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect, and the right ventricle develops thickened muscle.
Because the aorta overrides the ventricular defect and there's pulmonary stenosis, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. Sometimes the pulmonary valve is completely obstructed (pulmonary atresia). Infants and young children with unrepaired tetralogy of Fallot are often blue (cyanotic). The reason is that some oxygen-poor blood is pumped to the body.
For everyone that lives close to us and hangs out with us this is for you... PLEASE for Maccoys sake if you have been sick in the last 10 to 14 days or think you maybe coming down with something PLEASE STAY AWAY!!! We would love to see you as long as you haven't been or aren't ill!!!
So no Fever,Diarrhea,Vomiting, Cough,Runny Nose, etc....
We must Practice Excellent Handwashing!! Things like RSV or the Stomach Flu could land Maccoy in the hospital on a ventilator fighting for his life so please understand we aren't trying to be rude we are a just looking out for our Sweet Baby.
If you want to do something for Maccoy you can PRAY FOR HIM!!! If you have questions please feel free to ask!!
1 comment:
100% in my prayers. I'm not sure he's mentioned it, but Jon has had our church pray for both little ones both weeks after they were born (we weren't there this week). I thought it was super sweet, and my do your spirit good to know about it. Hugs!
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