Monday, December 1, 2008

"My Story..." Monday: Those Two Words

As February came to a close, it marked two months of NICU stay for C. And two months of living in one room at the Ronald McDonald House for the rest of us. Still, our spirits were good. C. seemed to be getting bigger and stronger with each day. She was closing in on 3 lb... finally. She was receiving oxygen through only a nasal cannula and she had made the move to a "big girl bed"... a crib. This was a huge, welcome step! It's nice to be able to just pick up your baby rather than have her "trapped" inside the isolette. She had also just started receiving one or two feedings a day through a bottle instead of just through an NG-tube. Things were moving right along.

Part of the usual Tuesday afternoon routine in the NICU was for the ophthalmologist and his assistant to come through and check the babies' eyes. They were looking for signs of Retinopathy of Prematurity, or "ROP". In a nutshell (and I'm really over-simplifying here), ROP causes the tiny blood vessels in the eye to grow rapidly in a haywire fashion. This can cause problems with the retina and, in the most severe cases, causes the retina to start to detach which will ultimately lead to blindness. Treatment for ROP depends largely on the severity of how it presents. In minor cases, they often leave the babies alone because it seems to correct itself. In moderate to moderately severe cases, they go in and do laser surgery to "zap" some of those random blood vessels and hopefully halt the growth. In the most severe instances, the baby needs to have retinal surgery.

Getting checked for ROP was nothing new on our agenda. So far, things had looked pretty good with C's eyes. That particular Tuesday evening, however, I received a call from the eye doctor. He recommended that C. have a round of laser eye surgery because he didn't like the pattern of vessels that was developing. His partner would perform the surgery the very next morning.

We still weren't overly concerned. Maybe that seems odd but the only way I can explain it is this-- it's all relative. With everything our daughter had been through, this was a pretty minor procedure. And we knew another family whose little girl had had the same surgery.

The surgery itself took less than a half-hour. My husband stayed in the waiting room with our son and I went back to see her after she was back in her module.

I spoke to the ophthalmologist who had performed the surgery; she seemed pleased with how it went and said they would continue to monitor any signs of ROP in their weekly checks.

As she was leaving, the neonatologist in charge of C's care at the time stopped by. At our hospital, the neonatologists rotated which babies they treated every two weeks. This is a little disconcerting at first since it seems like you just about get used to someone and then they're gone. But, over time, you start to realize something-- each doctor has his or her own forte, their own ideas, their own solutions. By changing doctors, you give your child the best opportunity to get that "perfect" fit, that ideal solution at just the right time. Like when Dr. Winchester suggested the steroids to get C. off the vent. It's like getting a "second opinion" over and over without having to go anywhere. I believe it's a wise system.

Anyhow, our neonatologist at the time was a man named Dr. Trautman. There are two reasons I'll never forget him. The first is that he is the one who got us in with our current pediatrician who I love beyond belief. Dr. Trautman did the research in our area (two hours from his own) to find a superior doctor and got us in, though he most certainly was not accepting new patients. I am so thankful for that.

The second reason I will always remember him is this...

As he ran through C's chart with me and talked about how she was doing, he suddenly said,

"I think it's about time we start talking about those two little words."

I know I met his gaze with a blank stare. I had no clue where he was going with this.

He smiled and said,

"Going home."

The impact of those two words is too much for me to describe. For a brief moment, I thought he was teasing me. I quickly realized that no one with a heart could be that cruel to a NICU parent.

When your baby first settles in at NICU, they tell you that your first target release date is your baby's due date. If you make it out by then, well, you can consider yourself lucky. C's original due date had been April 15th so this seemed amazingly early. We chatted for a few more minutes and Dr. Trautman said he thought we, along with the director of neonatology, should start working on a two week timeline to go home. I rushed back to the waiting room to share this amazing news with my husband.

We did indeed meet with the director and he confirmed Dr. Trautman's opinion that two weeks was reasonable. We prepared to bring our daughter home mid-March.

Another call from the ophthalmologist changed all that. I'll tell you about that next week...

1 comment:

Nancy Brown said...

Tyler came home one day before his due date. December 23rd. I remember those words and the holding our breathe for no more brady's.