January 19th- Concerns and Surgery for Koby

The last 24 hours have been a challenge. When we first arrived at the NICU three weeks ago our nurses were helpful in preparing us for the road ahead. I remember hearing that NICU babies often "take three steps back before they make one step forward." At birth, Koby started with enough backward steps that it was as if he was knocked down. After a few days he began taking steps forward. Today he is three weeks old. He's had a run of about two weeks straight of only forward steps.

Last night Sharalee was holding Koby when he started to shake rhythmically. He was crying before that as if something was really agitating him. When the shaking stopped he immediately stopped crying in an instant and fell asleep. Luckily the nurse saw it too, so I immediately asked her if she thought it might be a seizure. She said it did look like one and that was not anything we'd seen him do before or at least since he'd been warmed from his cooling therapy. Throughout the night he continued to be agitated and unsettled. At 11:15pm last night Sharalee called the hospital to check in on him, and they recommended that both of us come in to the hospital today to meet with our doctor.

The way he has been acting the past 24 hours have caused concern. Koby will be transferred out of the NICU temporarily tomorrow morning (Wednesday Jan 20th) to take a look at his brain with an MRI. He will then go back to the NICU and have another EEG done. They will need to again monitor his brain activity for 24 hours, hoping to see what is going on. As parents we are obviously concerned about how he has been acting the past day or two.

He has continued to make a little bit of progress with eating, but he hasn't been able to swallow as good since yesterday. We are trying not to be concerned with that right now. A nurse put it into perspective when she explained that once a day Koby can barely swallow 5mls of milk when he's supposed to have 55mls each feeding for a total of 240mls in a day. That is no where near enough to keep him healthy and growing, and the amount will increase as he grows. After meeting with our Neonatalologist, and the surgeon, we have decided to schedule the G Tube surgery this coming Monday. There has been a lot going into this decision, and at this time we feel it is the right plan for him. Basically a G Tube is a tube that goes right into the stomach from his abdominal area. We will feed him through a syringe that goes directly into his stomach. We don't know how long this will be how he is fed. It could be weeks, months, or years. We will continue to work with him on eating as much as he will tolerate it. Having the G tube will allow him to come home and be around the love and warmth of our family sooner rather than later.

As a family we need to once again ask for your prayers. Not only for Koby, but for the doctors, nurses, and our family. We remain hopeful for more positive news, and more progress for our sweet boy.