"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Sunday, May 9, 2010

May 9, 2010

It’s been another rough couple of days. Our little man has some sort of infection and his surgeons and primary neonatologist can’t figure out where it’s coming from. It’s scary because he’s been on heavy duty antibiotics for almost 6 weeks now (minus a few days 3 weeks ago when they tried to start his feeds). So far all of his blood cultures have come back negative, but his platelet and hematocrit counts continue to drop and he’s having bradycardia (heart rate drops) and apnea spells. Last night they tried to do an LP (lumbar puncture or spinal tap) to rule out meningitis, but they couldn’t get any spinal fluid and instead got blood. We were told that the surgical team will decide if they want to attempt it again.

I didn’t feel comfortable holding him yesterday because his saturations were all over the place, but I was determined to hold him on Mother’s Day and he seemed to be doing better when we arrived. Although his oxygen levels weren’t fluctuating much, he received a larger ventilation tube last night and we noticed him gagging a lot on it today. We had been cuddling for about an hour and a half when he started gagging and I could hear crackling from his lungs. He was desatting a little more frequently and I told the nurse that I thought he had a lot of secretions in his lungs. She said she was going to suction him and as soon as she started, he dropped his heart rate and his oxygen saturation. Before I knew it, his heart rate was in the 50’s (from about the 150’s) and his oxygen saturation was 4 (normally between 87 and 95). They began bagging him while he was in my arms and nothing was happening. I looked at his face and he was blue and lifeless. At that point his nurse hit the “code” alarm. Doctors and nurses appeared out of nowhere and they were opening his blankets to get at his chest as he was taken from me. It was such a scary moment and although they kept telling me he was okay, I wanted to crumble. I felt absolutely helpless. I think I was only able to breathe once I saw his color come back and his eyes opening and looking around.

It’s really hard to see our son, who is already so sick, getting sicker. We’ve spent hours on the internet the past few nights trying to see if we can find anything that might help diagnose him. We know that’s not our job, but we know Benjamin and feel as though we are his best advocates. Our poor baby deserves to catch a break.


  1. Benjamin is in God's hands. Only God knows the plan. We continue to pray for him.

    It is very scary, as a mom, to watch our children go through things that they shouldn't. Kids should be able to run around and play and laugh uncontrollably (think Kelly's giggles). I have watched my daughter persevere through many tough times. Benjamin seems like a tough little cookie.

    I am so happy that you were able to hold him, if only briefly. He is probably just as frustrated as you that he isn't able to cuddle without all the machines surrounding him. Just remember that all of these things are pulling him through each event, one by one. Your love, above all, sustains his love for you.

    Keep the faith - remember breathe in faith, breathe out fear. Each moment forward is another one gained - for all of you!

  2. You are amazing advocates and Benjamin is so lucky to have you as parents! We are all praying that God sends some help your way and they can find what's ailing poor little Benjamin. But know that Benjamin can feel every bit of love you're giving him and that's what's helped him so far.