Friday, July 29, 2011

NICU - Part 6

This is the sixth in a series of posts I've written covering Channing's NICU story. This will be published in 7 posts ie it's long! Bear with me.

Read Part 1 here
Read Part 2 here
Read Part 3 here
Read Part 4 here
Read Part 5 here

Right Back In It
As we walked back to our NICU room from the conference room, Channing’s Primary Dr. was there. He had just come on shift.

Her Primary looked at the MRI results. He hadn’t seen them yet. He was talking to the Neurologist about the findings. The Primary doesn’t agree with the findings. Well, he does sort of. He agrees that the MRI appears normal but he’s convinced that Channing has some unknown neurological condition. The Neurologist who just told us he thought things were fine, comes back in to examine Channing. I started flipping out. I was shaking. I felt like someone had knocked the wind out of me. I went to the bathroom and got sick. I come back and the Primary was going through the list of things that he attributed to her having some sort of neurological problem even if it isn’t evident on the MRI. This is where I learn that Doctors don’t like to disagree with one another, especially not in front of a patient. The Neurologist listens to the Primary’s concerns and agreed with him. Basically throwing out everything he had just told us. I couldn’t believe what I was hearing. I was destroyed again.

They go through a list of concerns with us and some of them are valid. However, we didn’t realize until later that every single concern he listed is a common concern among ANY 26 weeker.

So the primary decides he wants a genetic microarray done. This is an exhaustive genetic test. We were told “If there is something wrong with her genetically, this test will find it”. Also he wanted another Neuroradiologist to look at the results. All of the sudden, our pediatric neurologist wasn’t the guy. Our guy didn’t know what he was talking about. This Dr. we had never heard of was THE guy! This new test, this new doctor were never mentioned before. To say this was frustrating is a huge understatement.

The primary went away to talk to the nurse and they continued looking at the CT scan and the MRI. I cornered the Neurologist outside Channing’s room and asked him what the heck was going on. We were speaking in hushed tones because apparently he didn’t want the Primary to hear. This scene was very strange. He tried to explain that her Primary did bring up some good points. She shouldn’t be doing some of the things she is and she should be doing some of the things she isn’t. I asked him to give her the benefit of the doubt. She was born 13 weeks early and has lived in an institution her entire life. This situation isn’t exactly normal so why should her behavior be. He agreed with me. He told us that his job is extremely hard and he’s just giving us his opinion. He eased our minds a tiny bit. He gave us some spiel about this being a marathon, not a sprint. And that there are no definitives in pediatric neurology.

Our nurse that day was amazing, she confronted our primary and asked him why he did that to us. She said “This is the first good news they have had and you ruined it. Why did you do that to them?”. He said “I just don’t want them to get their hopes up about this baby”. They continued to argue over the CT scan vs. the MRI. She went on to say “It’s almost like you want something to be wrong with her.” He was taken aback by this and said “No, no I do not”.

This is exactly how we felt though. We took it personally. He was doing everything he could to prove that our baby had a horrible neurological problem. He couldn’t get past how her brain looked on the CT scan. He didn’t care what the MRI looked like. We felt like he was too proud to admit that he was wrong. I remember sitting next to him in our very first meeting. I said “Her brain is so small and she’s so premature. Is it possible that her brain could look different in 3 months?”. He said “No, not possible.”.

At that point we didn’t know what to think. We couldn’t believe what we just witnessed what we did. There were no answers given and definitely no apologies. We had three MDs telling us our daughter had a normal brain. We had one MD telling us it didn’t matter if her MRI looked normal. She still had some undetermined neurological problem that could mean any different number of things for her life.
BUT we left the NICU that day with HOPE. We hadn’t had any hope in months and it felt good. We had an MRI that looked normal. Only time would tell if Channing developed normally or not.

We continued to battle with Channing’s primary Dr. during the rest of our NICU stay. He flat out refused to reset his thinking about her. It was very tense for us to even be around him. We came close to transferring Channing to St. Francis which is closer to our home but ultimately we decided that we didn’t want to leave the amazing nursing staff that we had grown to love. We knew we were close to going home.

Channing continued progressing. She still had some issues with eating. She grew out of most of these issues. Her genetic microarray came back normal. We never ended up hearing anything from the new Neuro-radiologist. Channing made significant gains in her last two weeks in the NICU and was discharged on March 4, 2011 with no monitors and no meds. She spent 105 days in the hospital.

So where does that leave us today? MG and I believe that Channing's brain is normal and healthy. Since we left the NICU she has been developing normally. We believe that she will continue to develop normally. She’s been seen by doctors, specialists and therapists. They all tell us she’s fine. In fact, most can’t even believe she is a 26 weeker. Channing sees the same specialist every two weeks and she has to convince me every visit that Channing is developing typically. She’s right on track and even ahead on some things. I contribute this to the tremendous amount of time, energy and love that her grandparents devote to her every day. I still do worry though. I’ve been told that’s a mom thing that doesn’t go away. Channing could be graduating from college and the first four months of her life would still be in the back of my mind.

Part 7 - I'll do one more post in this series next week about miracles and wrapping up the first 4 months of Chan's life. Thanks for reading!

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