March 31, 2010

After 2 or 3 days of rest from Saturday’s surgery, Benjamin had an ultrasound of his head today which showed some increased brain swelling (cerebral edema). Of course we were very concerned, but the Dr’s explained that with such difficulties during the previous surgeries, this was to be expected. A few work ups on Benjamin also showed some traces of blood in his lungs, which couldn’t immediately be explained. I was however given the opportunity on Wednesday night to hold my baby for over an hour. It felt so good to have him in my arms again.

March 27, 2010

Our little trooper finally started putting out some pee this morning! He went in mid-afternoon for the second surgery and did very well. Dr. Buchmiller was able to pull out a stoma or ostomy before the perforated section of bowel. They left spaces between his incision (which is about an inch and a half wide) so any fluid buildup would wick out.

The next few days went well. He was doing a lot of breathing on his own over the vent and his vitals were looking good.

March 26, 2010

Benjamin was taken into surgery around 12:45 this morning. Ryan and I were the only people in the huge surgical waiting area on the 3rd floor… I can’t even explain to you how eerie it was. Dr. Buchmiller came out at about 2:30 am and told us that Benjamin was very very very sick and they couldn’t complete the surgery because he went into cardiac arrest and lost a lot of blood. They were able to revive him, but had to leave his little tummy open. She said the top 1/3 of his bowel looked fine. After that, she saw two perforations which she stitched up. He had meconium leaking in his belly and she tried to remove as much of that as she could. She had to stop there so we don’t know what the bottom part of his bowel looks like. Her hope was that he would regain function of his kidneys so he would have better blood flow to buy her more time in surgery, and she could go in and finish the ostomy on Sat.

March 25, 2010

We buried Stephen this morning which was absolutely heartbreaking. But we barely had time to grieve because Benjamin wasn’t doing well so we had to get back to the hospital. Benjamin’s stomach had become distended and had turned blue. After looking at the x-rays and not seeing any air expelling from his bowel, but having the condition worsen, his doctors collectively decided it was time to transport him to Children’s Hospital. He arrived in Boston around 6:40 and they continued to monitor him and perform x-rays. We met Dr. Buchmiller and she told us they had to go in and do exploratory surgery or else Benjamin wouldn’t make it. Of course in the midst of all this, he went into kidney failure again.

March 24, 2010

Today Benjamin was put back on the CPAP machine (they had tried maybe a week ago and he was able to stay on it for 10 hours, but because he wasn’t clearing out enough carbon dioxide, he was put back on the ventilator). He had a hard time calming down so he’s on the fentanyl drip again as opposed to the boluses he was given over the past few days. The CPAP machine provides him with constant bursts of air through tiny prongs in his nose, but allows him to breathe on his own. I was there this afternoon for a little over an hour and he had 2 apnea spells (where he stops breathing and his blood pressure drops). Although this machine makes me nervous, it’s good for him because he can strengthen his lungs and make them healthier. They put his feeds on hold until he adjusts to the machine, then they’ll start him up again. He’s been tolerating his feeds well and we’re hoping that will continue.

Tonight was really tense and extremely emotional. Benjamin had another spell and obviously he couldn’t tolerate the canula they put him on so they wanted to put him back on the vent. Dr. Zahr was called in to help intubate him because he clamped up when others tried.

March 23, 2010

Ryan got to hold Benjamin tonight and he loved it. Again, Benjamin was right at home with him and very calm. He obviously knows his parents!

March 22, 2010

I got to hold Benjamin for the first time tonight. It was a bit scary because he was connected to the vent and because of all the wires and lines attached to him; not to mention how tiny he is. We both needed it though. He was awake and happy and I was happy. The minute his nurses put him back in his isolette he fell asleep.

We also learned tonight that our little guy has a nickname. One of his nurses, Mike, said he was kicking his legs so much at one point that he started calling him “Chief Running Ben”, “the Chief” for short. We have a feeling that’s going to stick with him.