What's up with Madden...

Lots of friends are asking whats going on with Madden, so while I have a second to type (Prestlee is holding Madden) I thought a post/update here would be good instead of multiple phone calls/emails/replies of repeating myself :)

Madden was born and had respiratory distress so was taken to NICU. It was originally thought he inhaled mucus or because he was premature he was just going to struggle a little to breath initially just as the Prestlee & Henley did. Madden seemed to be struggling harder after the mucus was cleared and as time went on didn't improve and was admitted to NICU & had some tests ran which included chest x-rays. I was GBS+ so there was a fear that he was having difficulty from that or sepsis. Thankfully his blood cultures came back negative on the GBS but the chest x-rays were not negative. He appeared on the original x-ray to have a pnuemothorax (collapsed lung- air pocket- pressing on outer, upper right lobe) & pnuemomediastinum a second more concerning "air pocket" over his inner, upper right lobe above his heart. He also appeared to have several other "tiny" "spots" on his lungs that were scattered around and didn't change in size throughout his NICU stay. He was placed on IV for antibiotics in case of lung infection. These "air pockets" weren't in great positions for a chest tube to evacuate the "air" because of their locations being so close to the heart and on the inner areas instead of the outer area of lung near the rib cage.. Typically chest tubes are places to relieve the pressure & air when the pockets are on the sides of the lungs. Madden received x-rays daily at first then every other day when the "pockets" didn't seem to be resolving and then the radiologist noticed the "pockets" looking hazey and more cyst like than "air". He was extremely tired and fatigued and couldn't eat or nurse well at all without his oxygen levels dropping to low or his heart racing too high. So a feeding tube was placed to allow him to get his feeds in without all the instability with oxygen and heart rate issues (desats & bradys) and keep his sugar stable. He was allowed to nurse for a limited time at first while the pump was giving him about 90% of his feeds. After about 5-6 days He became stronger and less fatigued and more coordinated to feed (suck, swallow & breathe) and we added oral feeds one by one and less pump/tube feeds. So now he's home on all nursing! As the x-rays kept coming back with these pockets unresolving the neonatologist & radiologists became more and more concerned that these were not "air pockets" or pnuemothoraces at all and more of a possibility of something called *CCAM (detail at bottom of post about CCAM). We consulted with an awesome Pediatric Pulmonologist and will be seeing him on Monday the 19th again at Scottish Rite Childrens Hospital for follow-up x-ray and/or CT scan and if it is clear then we'll know that Madden just had the collapsed lung pockets that just took an abnormal amount of time to clear up. If it is NOT clear, then we know Madden has CCAM. We are also consulting with a Pediatric Oncologist to be extra cautious with all these " pockets/spots" to be sure they aren't anything more serious that we could miss or write off as something that they aren't. I had a lot of necessary radiation during the pregnancy that would put Madden at higher risks for certain serious issues so we are very relieved to have the doctors staying on top of things with him. Regardless of what Madden has at this point he's definitely got a very depressed immune system and we have to protect him from sickness which will limit greatly visitors and him getting out until that resolves & he's healthier. So that in a GIANT nutshell is whats going on with Madden and where we are now. Home after a 9 day NICU stay & waiting to see whats what with the little guys lungs & if surgery is in his near future or if we get to put this lung stuff behind us and jump the next hurdle!! He's doing great, he is such a little fighter and so very sweet. We are so happy and thankful that he's here and okay. I am very-extremely thankful for all the love, support of our family with helping with the boys, & hotel stay taken care of so i could be close to Madden to help get him on oral feeds and home. You all will never know how much it all has meant and how very grateful I am.

CCAM- Congenital Cystic Adenomatoid Malformation, which is typically a benign (non-cancerous) mass of abnormal lung tissue, located usually on one section (lobe) of the lung. Madden has two however. It is caused by overgrowth of abnormal lung tissue that may form fluid filled or solid cysts. The tissue does not function as normal lung tissue and must be surgically removed to prevent several very serious issues.