May 12, 2014
Our son, Jacob Anthony was born at 1:23 PM at Kettering Hospital. 6 LBS 8 OZ 20" long. Our whole world changed at Wednesday morning around 2AM. Tuesday evening, Jacob was sent to the nursery for his car seat test and we were to go home Wednesday morning. Around 2AM, 5-14, the NICU nurse came into our room and said after a feeding Jacob's stomach had gotten descended. It was hard to the touch. Took some x-rays and noticed he had Maconium ileus. He needed emergercy surgery to take out of his intestines.
Tony and I packed up our room and I was released. Jacob was transferred by ambulance on May 14 and Tony and I drove over to Dayton Children's Hospital. I was a nervous wreck. I cried so much and so long I didn't know if I had tears left. Around 5PM, Jacob under went surgery and had his intestines removed and the "tar" stool scraped out of him. We were in the NICU for over 2 and half weeks. We found out within those weeks, Jacob's Ohio screening test came back positive for Cystic Fibrosis. I was a wreak again. I couldn't stop crying. I though I failed during pregnancy. Both Tony and I are carriers for CF which then passed off to our little one.
He was doing great. Eating well, started to poop good. We kept telling baby Jake we would have a pooping party when he finally pooped. Jacob was released from Dayton Children's on May 31, to come home.
We had a great two weeks, at home, with Jake until Sunday morning, Fathers Day, June 15, 2014. At 11:30 PM (sat) Jake had his last feeding before he went to bed. He took down 5 oz. Still cranky, wouldn't go to bed. We finally got him to sleep until 2AM (sunday) he woke up crying. Thinking he was hungry again, I made him a bottle. I had him sitting up trying to get any kind of burp, air bubble out. He started to projectile vomit on me and himself. It was milk he was puking. This happened four times in a row. I changed us and finally got him back to sleep until it happened again at 3AM. Now i knew something was wrong. He loved to sleep on his stomach and i was told never to leave him unattended so I put him on his tummy while I slept next to him on the floor in the living room.
Around 8AM, he woke up crying, I thought he would be hungry since he really didn't eat since 11:30PM the night before. He wouldn't eat anything. He was pale and his eyes were sunken in. I woke up Tony and told him we are going to the ER. Something was wrong.
After they checked Jacob at the ER, they admitted him to a room. Needed a bunch of X-rays and then a cat scan. Jacob kept having projectile bile vomit, we all knew something was wrong. The dye that was going through his intestines was going through slow. Knew he had some kind of blockage. Only surgery would tell.
Monday, June 16, 2014 Jacob went under his second surgery and had 15" of dead bowels removed. They said this was not Cystic Fibrosis related but previous surgery. His intestines moved around and twisted creating them to die off. He came out of surgery great. He has been on a ventilator since but has been breathing on his own. They are waiting to take out the ventilator because today, June 18, Jacob will be going through another surgery. Since his PICC line (IV) wouldn't go in, they are surgically putting in a broviac catheter. A permanent IV through his collar bone down pass his heart.
The surgery is today around 1:30PM. Hope everything goes well. The ventelator will then come out and his swelling will hopefully go down. They also noticed around his insicion it is red. Keeping an eye on it that it is not infected.