Airflight back to PICU in New Orleans 1/25/2006 with pneumonia

It all started with a cough, then he wasn't acting like himself. Britt reads him pretty well and she took him in to the ER at Woman's and children's Hospital. He was admitted to the PICU. The next day they were worried about his breathing and his history so the Dr. Decided to airflight him back to Oshner's in New Orleans. Britt wasn't allowed on the flight . So we stood in the parking lot crying and watched the helicopter evac him .It was like opening up old wounds. To have to let him go. I drove Britt up to be with him and she stayed with him. Because I had to get back to work. These pictures were taken by my cousin Susan while he was there. He was released after a short stay. Note he was back on oxygen, his respirations are 80 to 100/min when he is distressed.

Christmas Eve and Christmas Day

The week of Thanksgiving Ben had a tubefeeding placed.

He gets bolus feedings during the day and runs on a machine at night.

Ben in bath October 2005

This is at 10 months old with the monster costume he looked normal size but at ten months old and only 10 lbs he was way off the growth chart. You can tell how small he was in this picture. We were finally able to get the Dr. to agree it was time for a tube feeding. He only eats small tastes of food by mouth. And would have nothing to do with a bottle. Britt was so tired from feeding him every 2 hours she just couldn't go anymore. But she had given him 8 months of breast feeding this was a miracle after all he had been through. Most nurses and Dr's didnt think he would leave the hospital the first time without a tube feeding.

Ben's first Halloween 2005

Ben with his brace. 10/10/2005-

I don't think it ended up being 3 months. It was off before Christmas.

Ben just before his spinal fusion and before d/c from hospital after surgery

The top picture was taken by my camera phone in preop. The other is in his hospital room. Oschner's in New Orleans.
Ben's scholiosis was severe he will more than likely need more surgery's . He will wear this Brace for 3 months. It was heartbreaking when the man came to fit the brace. Ben screamed so much. He doesn't like anything close to his face. I quess that is because of all of the things taped on him for so long. But after a few weeks he was better only cried when it was being put on.

My first mini vacation Balloon Festival in Baton Rouge

July 4th taken by Aunt Hailey

Ben goes to the annual fireworks at Albertsons. He wasn't even scared.

Ben after oxygen came off

A few pictures taken April /May 2005 before oxygen came off

Oxygen off for a quick picture

Britt snapped this picture of him without his oxygen. It was kind of weird to see him without it we had grown so used to seeing things on his face,that this picture was not normal to us. Goes to show you how normal is what you know. He had his oxygen for three months. It was so difficult everywhere you had to take him ,you had to load up the tank , ambu bag , apnea monitor,and diaper bag. When he came off the oxygen it was like his cord was finally cut.

St. Patricks Day ( Ben comes home )

Well we know he is a true cajun 'cause he went to New Orleans on Mardi Gras. But he may have a little Irish in him also cause he came home on St Patrick's Day.
This was a very scary time cause he was still on oxygen and an apnea monitor that would go off everytime he cried to much cause his oxygen rate would drop. But we were so happy to have him home. We knew he still had a long way to go . But he had survived and that was all that mattered.

Grandpa Rick holds Ben

Benjamin with Grandpa Rick in stepdown. Almost ready for home.

Aunt Hailey sees Ben for first time

The rules say only siblings can visit in NICU. When one of the nurses realized he had a young Aunt that hadn't seen him yet she pulled the curtian and snuck her in for a visit. I am not sure she really believed he existed before she saw him. It was a happy day.

Mom gets to feed Benny

Finally he was able to be bottle fed. He would only eat for a short time then have to get the rest of his feeding in the nasogastric tube. By this time we knew he had severe scholiosis and his breathing problems were more than likely from his ribcage not allowing his lungs to expand the way they should. The inability to eat might be from the interventions that had saved his life. We were told many ECHMO babies end up with tube feeding. But Britt had pumped her breasts every 2 hours for all of these weeks and she would not accept that. I finally pushed her to insist they would let her try to breast feed. He latched on and did good. although we had no idea how much he was getting. He was transfered out of NICU to stepdown.

Uncle Brandon finally was able to go see Ben

The Next weekend I visited FEB 25th

My Baby was holding her baby. Oh happy day. He stole what was left of my heart with those big blue eyes. Still on oxygen and fed through an nasogastric tube but much inproved from those first weeks.

Britt holds Benny for the first time.

Ben came off vent during week while I was gone. And Britt was allowed to hold him for the first time. My cousin Susan went and took these pictures. I thank her for all her kindness during this time.

My visit Ben going through withdrawl FEB 18th

By the time we made it to New Orleans the Dr.'s had taken him off some of his medication . He was going through withdrawls. This is a picture from that weekend. He would cry and no sound would come out cause of all the tubes he had. He looked very different than the pictures I held on my ride to see him. I was sad to have missed seeing him alert ,but happy to be with Britt during this difficult time.