Long time no pictures!

I figured some of you might be missing this sweet girl's face. Channing is doing great. She started daycare and loves it. She promptly got her first and second colds. She's managed them both fine. Chan is over 18 lbs now. I would say that as of today she's officially crawling. Ok more like she can crawl when she wants to. She's also sitting upon her own. We couldn't be more proud of this little girl. She's so determined in everything she does. Overall, things are wonderful here.

Some People

Some people marry for money. Some people marry for love. Some people marry for health insurance. I married for in-laws. I've alluded to the fact that I hit the jackpot in the in-law department but I thought I'd dedicate a post to them.

Sure my husband is great and all but my in-laws are ahhhmazing! They have hearts of gold and are beyond helpful. They drive to Tulsa every day to watch Channing for us. Which is a 40 minute trip each way. They do so much for us including but not limited to laundry, cleaning, mowing, Trucker care (this is a big one!), ironing, dishes and gardening. I know, I know, we are seriously spoiled. It's embarrasing to admit! All this on top of taking care of Channing from 7am to 5pm, Monday through Friday. Simply said, they are wonderful!

BUT the best thing they do is love Channing. That girl will never have any doubt how much she is loved by her grandparents and that's what I appreciate most.


Channing ready for her first (half) day of 'school'.

Miracle or Mistake?

I'll keep these two.

This is the last in a series of posts I've written covering Channing's NICU story.

Read Part 1 here
Read Part 2 here
Read Part 3 here
Read Part 4 here
Read Part 5 here
Read Part 6 here

Miracle or medical mistake?
As I mentioned before, members of the hospital staff immediately threw out the word miracle. If you know me well you know that miracle really isn’t in my vocabulary. We were told there was no medical explanation for her MRI looking so different from the CT scan. Remember, they said this was an impossibility. That's pretty much the definition of a miracle, isn't it?

So was it divine intervention or a medical mistake? I'm not sure. I've struggled with my faith for many years now. There are so many people that deserve god's grace more than I. Now MG and his parents, they deserve it. They've been through unimaginable tragedy but me, I don't. Life's pretty much always gone my way. I didn't pray after Channing's diagnosis. I was too angry. I know lots of others did on our behalf. So maybe I received this blessing by association?!

I remember reading the blog of a woman whose unborn child was diagnosed via amnio with Down Syndrome. Amniocentesis is 99% accurate. She said she prayed and prayed and prayed that she was in that 1%, that when her baby was born they were going to say "We were wrong. Here is your perfect baby!!". That didn't happen for her. It's not the same situation but I felt like I'm in that 1%. It happened for me and I'm completely unworthy. Some days it's still hard for me to accept the gift I've been given. I'm working on it though.

I’ve been asked if we have any animosity towards the doctors. I did, I do. I wanted them to apologize. I wanted them to realize how much they tortured us. I wanted them to admit they were wrong. The neurologist never sent us a final bill. Is that an apology? Considering how much he gets paid, it probably is!! Ultimately though, they saved my daughter’s life and I’ll always be thankful for that. That's way better than any apology. Fortunately, Channing's care was never changed or compromised by this diagnosis. I've said it before, I’ll never forget the amazing nursing staff at St. John’s.

This concludes Channing’s NICU story and the hardest three months of our lives. I’m not sure exactly how to sum this up. Our daughter was born 13 weeks early. We were told she had a brain defect that would leave her severely disabled, then we were told 3 months later that she didn’t. She's growing, she's healthy and we're all happy!

This girl. . .

Got a "she's perfect" from the pediatrician on Wednesday. If anyone in the (south) Tulsa area is looking for a pediatrician, we highly recommend Dr. Raley. Channing is 16 lbs and is making gains on the growth chart for her actual age! She's rolling around like crazy and loves scooting on the hardwood floors on her back. Chan will be starting daycare in a couple weeks. We are excited but also pretty nervous about germs!! She hasn't been sick yet. I know it's going to happen eventually.

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!

This guy. . .

Truck after a long morning of squirrel hunting. He's available for small jobs if anyone needs to get rid of some critters.

NICU -Part 5

Fast forward to MRI day week.

They finally decided at 37 or 38 weeks that Channing would have the MRI. This is what we were waiting for. This would give us a clear picture of her brain and a more accurate diagnosis and prognosis. I wanted to know so bad or I thought I did. I thought this whole time I wanted answers. I thought I wanted someone to tell me “yes, she’ll definitely be able to do this and not do that”. Then when this was on the horizon I got terrified. I didn’t want to know. I decided the “let’s wait and see” approach sounded a lot better but we went forward with the MRI.

She got the MRI on a Monday. We didn’t hear anything. So we waited. I was too nervous to ask. So we waited some more. Everyone in the NICU knew we were waiting for these results. Tuesday – nothing. Wednesday, Thursday – nothing. Finally on Friday after work I went to the NICU by myself. The Nurse and Nurse Practitioner were in her room and we were talking. I finally worked up the nerve to bring it up. I said “I want to preface this with, if either of you have knowledge of Channing’s MRI results I DON’T want to know anything without MG here but have her results come back yet?”.

This is where things start to get hazy for me.

The Nurse Practitioner told me “Ohh, I didn’t know she had the MRI yet. Let me check”. She went over to the computer and was reading. She said “Well look at this, I’m going to make your day”. A tiny glimmer of hope shot into my heart but I quickly killed it.

She said something else that gave me another tiny glimmer of hope but then I thought I misunderstood her so again shot down. She's saying words but they really aren't registering.

Finally she says “the results are NORMAL”. I still don't get it.

Who is normal? What is normal? What does normal mean?

The normal it says on the report can’t mean the same normal that I’m thinking of?! She says “Normal Brain!!”. So I say “No Holoprosencephaly?" She says "NO". I say "No brain defects?". She says "No, none".

She then reads to me the radiologists notes from the report. “Blah Blah Blah. . .Medical Jargon. . .Blah Blah Blah. Otherwise, NORMAL BRAIN”.

I couldn’t believe it. She kept repeating herself. I made her print the report and show me. I'm a visual person. Surely, they've made some mistake. I double checked the name on the report. It said Channing Gaylor. I asked if they read the correct MRI. She said “They don’t get many MRIs of babies down there. It’s hers”.

I'm about to pass out at this point. I still couldn't understand what was happening. My heart was about to burst.

Apparently, the Radiologist had another Radiologist read the MRI because it looked so different from the previous CT scan. So two radiologists agreed NORMAL BRAIN.

I wouldn’t say I’m relieved at this point. I’m totally not. I was in utter shock and disbelief. We never expected this. This wasn’t even in the realm of possibilities for Channing. The best case scenario was that she had a mild form of HPE and did not have the other fatal defect. The Nurse Practitioner had to talk me down because I was pretty upset. I told her I wanted to talk to the Pediatric Neurologist ASAP. She called him and scheduled an appointment for the next morning. I use the word appointment loosely. They told us to be there by 7am to wait for him. When you're the only game in town you show up when you want to.

I’m still thinking how is this even possible? The word miracle was immediately thrown out there. More on miracles later.

Three months in a living nightmare and I was waking up for the first time.

Word got around pretty quick to all the nurses and they started coming in and hugging me and crying with me. I remember Nurse A coming in. I told her “I’m waking up from this nightmare” and she said “Well good morning, Sunshine!”. I left the NICU to drive home to tell MG. I didn’t want to tell him on the phone.

I walked in to the house and I had the MRI results in my hand and I said “So I got the MRI results today”. I hand them to him with a “her brain is normal”. We stood there dazed. We were shocked, angry, relieved and grateful all at the same time. We wanted to hear it from the specialist though. If her brain was indeed normal how did this misdiagnosis happen? They were sure she had HPE. What makes them sure she didn’t now. We wanted answers, we wanted apologies.

We arrived at the NICU the next morning. Early. It was Saturday. We waited and waited. The Nurse Practitioner ended up calling the Neurologist after we’d been waiting for 3 hours. He says “Do they have to see me today?”. The nurse practitioner tells him “YES, they’ve been waiting for three months for these results. Get here and talk to them.”. We wait about another 2 hours and I finally saw him walk through the doors. My stomach was in knots. I was sure he was going to tell us there was some mistake and the Radiologists are idiots and Channing still has these horrible problems.

I don’t really remember the conversation with him much. I was pretty guarded. I think I just kept saying “so she doesn’t have HPE? Her brain is normal. You agree with the Radiologists? BRAIN = NORMAL!!”. I don’t remember how many times I asked this but it was a lot. He said he agreed with the Radiologists. He didn't really have a good explanation. The only thing he could come up with is that the CT scan looked slightly tilted and maybe that was the reason for the difference. I still wasn’t 100% convinced but I felt better. There were no apologies, no profusions of guilt for putting us through this for the past 3 months.

Part 6 next week. . .and then it sucked again.