Channing's 2nd Christmas

I probably don't need to expound on how infinitely better Christmas was this year than last year. Last year we schlepped around the NICU with long faces.

Flashback Friday

This isn't an enthralling video by ANY means but it's one of only a handful of videos that we took of Channing in the NICU. We took a lot and I mean A LOT of pictures of that baby in the hospital but we didn't take many videos that is one of my regrets from that time.

I was randomly looking through Channing's discharge papers while I was filing some other paperwork in her med file. I noticed that the nurses kept a calendar of every day she was in the NICU and wrote down any big happening for that day. It was strange to look back and see everything that happened a year ago. On this day last year Chan tested positive for C-Diff. Major bummer. I thought we would never get her out of isolation but Chan continually testing negative for C-Diff and my constant badgering finally convinced them.

Channing's 1 year pictures

We did a photo shoot with Amy Herndon a few weeks ago and she was great. Channing, however, wasn't really in the mood to be photographed. She definitely made Amy work for it. The poor woman was practically standing on her head to get Chan to crack a smile. But the finished product turned out beautiful.

Here are a few of my favorites. . .

Channing's 1st Year

Here is the slideshow I made for Channing's 1st birthday party. . .

Picture slideshow created with Smilebox

Flashback Friday

In honor of Channing's upcoming birthday (OMG I have a 1yr old, you guys!) I thought I would post the first picture that was ever taken of her. MG took this right after she was born. For some reason to me she doesn't look quite as small in the picture as she actually was. I'll post more about Channing's birthday and party next week!

Flashback Friday

These are our identification bracelets to get into the NICU that all the parents are supposed to wear while their child is in the NICU. Since you can't take them off they get pretty gross after a few showers. We eventually ditched them. The NICU staff knew us pretty well so they still let us in even without ID! :)

Next week, I'll have pictures of Channing in her first Halloween costume.

Flashback Friday

Channing was a few days old in this picture. This was the first time we saw her face unobstructed. Poor girl looked like a little old lady with all that stretchy skin.

ps. C turned 11 months old yesterday!

Flashback Friday

I saw this idea on another preemie blog so I borrowed it. I'll post a picture from our NICU days every Friday.
This picture is from Christmas Day last year. Chan was just over a month old. I remember Channing got her first tub bath that day. Unfortunately, MG and I missed it by just a few minutes but we made it in time to see her with her first clothes on ever. Which were of course huge on her. I think she weighed around 3 lbs. This was also the first time her grandparents got to hold her. She was still in isolation so we had the gowns and gloves on. Love that kid!!

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.

NICU - Part 4

This is the fourth in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Read Part 1 here
Read Part 2 here
Read Part 3 here

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .


This really sucked
I called the Little Light House. This is a local Christian school for special needs kids that doesn’t charge tuition. The waiting list was 2 & 1/2 years out. They said I would have to come in for a tour before Channing would have a spot on the list. I had visited this school before with a friend of mine to hear some of her friends speak about their daughter who has Down Syndrome. So I knew a little of what to expect.

I pulled into the parking lot. I saw all the handicapped parking spaces and vans equipped for wheelchairs and I started having a panic attack. I was bawling and hyperventilating. My makeup was all over my face. Again, it was hitting me. This was real life, my life. I came close to driving off.

I was texting a friend and she talked me down saying “Once you do this, it’s done. You can cross it off your list”. That made me feel better and somehow I pulled myself together to go in. The woman I had talked to initially wasn’t there that day. I had to meet with someone else. I didn’t want to explain the situation to someone new but I did. I took the tour. The staff was lovely. The children were darling. Most of the kids there have Down Syndrome. I remember telling the lady, “I wish Channing had Down Syndrome because at least then we would have an idea of what to expect”. I held it together pretty well until the end of the tour. The lady could tell I was getting emotional. In the middle of the lobby she asked if she could pray with me. I lost it. I started sobbing uncontrollably. She whisked me away into her office. I didn’t want to cry in front of the parents or the kids. I got it together and we prayed. Something, I hadn’t done a lot of since Channing was born. God and I were not on speaking terms.


Family and Friends
I’m not sure how we made it through the next two and half months but we did. Channing did well. She grew and progressed. We weren’t optimistic. We weren’t anything. We just loved her. Still no one really knew what was going on. My two closest friends, Emily and Stephany knew. I burdened them something awful. They kept me alive. They cried with me when I needed to cry and they made me laugh when I needed to laugh. Always, reminding me that Channing needed a kick ass mom rooting for her. So that’s what I tried to be. Fake it til you make it, right? I wasn’t going to hurt myself or anything but I was in a very dark place for a long time. They pulled me out. I’ll love them forever for that.

I remember telling my mom that Channing was going to be “special needs”. Again I couldn’t go into specifics and she didn’t believe me. She said “There is nothing wrong with that baby. Our brains could look exactly like hers but no one would know because no one ever looked”. I liked hearing that. Maybe she was right but in my heart I didn’t really believe it. Her denial over time eventually started pissing me off so I stopped talking about it with her. I talked about it with MG’s parents and they were more accepting. I knew it killed them though. It killed me for them. This was their only grandchild and it was looking like it probably always would be. I felt like such a failure on so many levels.

Part 5 tomorrow. . .don't off yourself yet. It does get better.

NICU - Part 3

Some vintage Chan


This is the third in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Read Part 1 here
Read Part 2 here

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .


Heartbroken
I cried and cried and cried. And I cried some more. I cried everyday for a month. Pretty much all day long. I remember people would tell me congratulations and I would burst into tears. That was AWESOME, let me tell ya!

I wish I could say I was one of those people that immediately accepted and took on this new role bravely. That I was working on a bake sale for the local brain malformation awareness and research campaign. I wasn’t. I was scared. I was mad too. I thought I might never be happy again.

I think the NICU nurses avoided me because I was so sad all the time. My heart was broken and everyone could tell. Plus, THIS misery did NOT want company. The first month of Channing’s life I was convinced she would die. No one told us this specifically but it just seemed like an overwhelming feeling I got from everyone and everything.

Then one day around Christmas, I made it through the day without crying and Channing hadn’t died. I don’t know what exactly happened but something clicked and I knew that we could make it. I worked on coming to terms with the idea of this new normal. I had good days and bad days. I had why me?, why her?, why us? moments. I just tried to focus on loving her and my husband the best I could.

We had this nurse, I’ll call her Nurse A and I remember she was happy around us. Not that the other nurses were sad but Nurse A was really joyful. And I remember thinking “Did she not see the notes where my baby’s brain is totally jacked and it sucks?”. Of course, Nurse A knew but I guess she also knew that we needed some positivity and to focus on Channing and not just the problems she had. Nurse A rubbed off on me and I felt better. I began to focus on Channing and (attempted) to block everything else out. I worked on parenting as much as a NICU mom can parent. MG told me “all we can do is celebrate the small victories”. So that’s what we did.

Doesn’t Mean Much
Channing was doing well until they told us they thought she was having seizures. Most kids with this brain defect have seizures so we weren’t surprised. Just very scared.

They recommended an EEG. This is a test done to check for abnormal brain activity. We did one. It came back normal. They said it didn’t mean much because she was so young. Channing threw a really low sodium level around the same time. They said this was related to the defect. It could mean her pituitary gland is fused or absent. They tested her levels of lots of different hormones. All came back normal. Again they said it doesn’t mean much. Channing had genetic tests run. They came back normal. Doesn’t mean much. Channing grew at a relatively stable rate. Doesn’t mean much. Channing looks around. Doesn’t mean much. Channing grabs our fingers. Doesn’t mean much. Channing attempts to lift her head. Doesn’t mean much.

Are you sensing a theme?

Every time we came to the Dr. with “but she’s doing this and this. She’s doing really well”. He would burst our bubble. I remember him telling us numerous times “any baby with a brain stem can do that”. ei DON’T GET YOUR HOPES UP. So we didn’t.


Part 4 coming Thursday.

NICU - Part 2

This is the second in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Read Part 1 here

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .

Expectations
Channing had the CT scan later that same day and they said the findings were consistent with what they originally thought but the Dr. wanted a pediatric neurologist to look at the scan just to be sure. The neurologist was on vacation as this was the week of Thanksgiving. We had a conference with our NICU team to discuss the ct scan results a few days later. This was the day I was set to be released from the hospital. I dreaded this meeting more than anything in my whole life.

MG and I sat there as people told us our child would be disabled, that we needed to enroll her in a school for special needs kids, she would probably have seizures, she would never live independently. Children are all about hope and the future. We had no hope, we felt like our future was gone.

I still repeated to them several times in our meeting, “Mild but you said mild. See right here on the radiologist’s report: it says mild!!”. They shook their heads at me. Even the mild form was a devastating diagnosis. Yes, they used the word devastating many times. She would probably never talk, never walk, never do anything. They told us that to further categorize the severity of the fusion she would need to have an MRI done closer to term (her due date).

Then they dropped another bomb on us. They said in addition to the holoprosencephaly (HPE), they thought Channing might have another brain defect. This one even more serious. Most children with this defect die before the age of 2. They wouldn’t really comment too much about this. Just said they thought it was a possibility. I asked the doctor to give me a best and worst case scenario. He wouldn’t give me the worst case. His words were “You don’t want to go there”. Again, we would have to wait for the MRI at term to know for sure.

MG and I walked back to Channing’s NICU room after the meeting and just cried. We left the hospital that day half dead in a living nightmare. Not only was our baby born 13 weeks early, she had a horrible brain defect that no one could fix. That drive home from the hospital was one of the worst times in my life. We were going to the big house that we bought to raise her in. We passed by two of the schools that we hoped she would go to.

MG’s parents were at our house unpacking for us. MG couldn’t face them. I had to tell them. I don’t remember what I said, something like “Channing has some problems with her brain and it’s very serious”. I remember being vague. We never told anyone the actual condition in fear that they would google it. Telling someone made it real. This is part of the reason we didn’t share any of this before. Plus, it was hard enough to deal with our own disappointment let alone everyone else’s.

Part 3 tomorrow

NICU - Part 1

This is the first in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Before you ask, I am writing this now for a couple reasons. 1) So I can move on. The first four months of Channing's life sucked and I'd like to get over it. 2) So I can remember and be thankful for everything that Channing is and does.

Also, this is Channing's story from my perspective alone. MG's version would probably be a lot different. However, he's read it and signed off on it.

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .

Three Words
Up until this point, we thought Channing was a normal, healthy albeit very premature baby. All the screening tests and ultrasounds I had throughout my pregnancy were normal.

Two days after Channing was born, I was sitting in her room in the NICU by myself. Her nurse came in and said “The Dr. is on the phone, he wants to talk to you about Channing’s head ultrasound”. I asked the nurse if she had a brain bleed. Brain bleeds are common among very premature babies and that’s what they are looking for with the ultrasound. Her eyes fell to the floor and she shook her head slightly, no. I knew something wasn’t right. I took the phone and all I remember from the conversation were three words “abnormal brain structures”.

There aren’t words to begin describe how I felt at that moment. A part of me died right then and there. I couldn’t even comprehend to ask the Dr. more questions or have him explain what this could mean for her. He asked if I wanted to meet with him to discuss and I said no. He said she needed a CT scan to confirm. I consented. I called Matthew in tears and mumbled something like “There is something wrong with her brain”. He rushed to the hospital (remember we were moving that day) and met with the doctor alone. I couldn’t face the doctor.

After the meeting, MG was walking to find me and I was walking to find him. I finally found him on a bench on one of the sky bridges. He had his phone in his hand. I knew he was googling the condition they said she had. I knew one thing; I definitely did not want to google anything. MG attempted to relay the information from the doctor to me. They said she had a condition called holoprosencephaly.

This is a congenital brain defect where the right and left hemispheres of the brain fail to divide in the early weeks of pregnancy. This fusion causes a wide range of problems from seizures, hydrocephalus, growth, feeding and breathing issues and developmental delays. There is no cure, no treatment, no medication.

They said they thought she had a mild form. The word mild was the only thing I took from the conversation with him. I clung to that word for dear life for three months. Kids with the severe form usually die within a couple months of birth, if they are even born alive. Kids with the moderate form fair slightly better but are still severely disabled with a shortened life span. Mild kids generally live longer but still have lots of motor and cognitive problems. One of the hallmarks of this defect is severe facial deformities. Not all kids have them but most do. I looked at her face for hours searching for the telltale signs of this brain defect.

Part Two tomorrow.

Birth Story - Part 2

Channing's Birth Story: Part 2

Go here to read Part 1

The tech finally makes it in and we are chatting about this and that while she sets things up. She was really nice. She starts the scan. She stops talking to me and doesn't look me in the eye the rest of the scan. I knew then something was wrong. I know she can't tell me anything so I don't bother to ask. The doctor comes in a few minutes later. She tells me it looks like I'm dilated on the scan. She wants to check to see how much. She checks me and her eyes nearly come out of her skull. She says to me "you've got a bulging bag". I immediately ask if I can have a cerclage. She shakes her head and says "no, we are way passed that". I knew instantly what had happened. Incompetent cervix, just like my sister. I sit there in utter disbelief. I couldn't believe this was happening to me, to my family again. My sister lost twins a few years back due to incompetent cervix and it was devastating for all of us. The doctor tells me I'm having a baby today. NOW. We briefly discuss the baby's chances. She was really positive about the outcome for an almost 27 weeker. She made me feel better. In hindsight, I think she sugarcoated it a little too much. Medically, there weren't any other options so I had to get on board. I say "so maybe this is a dumb question but do I have to have a c-section?". They say "oh yes, definitely". This is when I lost it. This was real. They were going to cut this baby out of me today.

This is where things start to get fuzzy for me. I call MG and I tell him "We are having a baby today. Right now. Come". I text or call a friend tell her what's going on. Her mom is a nurse and lives two miles away. Her mom comes to the hospital right away to be with me. I think I call other family members. I don't remember. They start giving me magnesium and some other drugs that make me really sick. They make you hot and nauseous. While all this is happening they had turned my bed headside down to let gravity help get things back where they should be. They were worried that the bag would rupture which would give them less time to get her out safely. They give me the steroids to help Channing's lungs develop but those take 48 hours to really be effective. After having my bed headside down for about 30 minutes, the Dr. checks me again. No change, bag still bulging. Baby is coming today without the help of the steroids.

We didn't know what to expect when Channing arrived. How big would she be? Would she even be born alive? I was such a wreck, I asked to be put under general anesthesia. They say I can't because it would knock the baby out too. They take me into the OR. MG was with me in his scrubs, shaking like a leaf. Getting prepped for surgery was horrible and surreal. The lights, the equipment, it was so foreign. The spinal sent little eletrical pulses down my legs. I was still sick from the drugs they had given me so I was dry heaving and vomiting the entire time. The doctor kept talking to me, making sure I was ok. I remember grunting back at her occasionally. Finally, they say "baby is out". She cried a little tiny cry. She was alive! I felt better. They brought her over to me and MG. She had lots of dark hair. This was a shock since MG and I were both blonde babies. MG made a joke about that. They told us she would probably be around 2 lbs but she surprised us and was 2lbs 7oz. I took this as a good sign. I knew this was just the beginning of a long road ahead in the NICU. We knew the next three months would be hard but we had no idea how hard.


Our first face to face meeting!

Channing's Birth Story: Part 1

This is the first part in a series of posts I'm doing on Channing's birth and NICU stay.

Channing's Birth Story: Part 1

***Warning! This post contains words like mucus and cervix. You've been warned!!***

November 19, 2010 I was hanging out on the couch with MG watching Winter's Bone. It was a Friday night. I was 26 weeks and 4 days pregnant. Earlier in the day, I had felt some pressure in the lower parts of my abdomen. (I'm trying here people!). I chalked it up to her getting bigger, me getting bigger. I wasn't alarmed at all. I wasn't in any pain. My belly just felt heavier. Anyway, later that evening I was watching the movie. I go to the bathroom. I see mucus. I think "hmmm that's new". I don't think too much about it. But just to be sure, I text message a friend who had given birth a couple months before. I ask her if she'd experienced anything like that. Her reply was "NO!". Hmmmm, that's not good. So I go ahead and call the doctor. She asks if I'm having contractions. I say "This is my first pregnancy. I don't know what contractions feel like". She asks if I'm in any pain or have tightening. I respond with a "nope". She tells me I'm not in labor or dilating if I'm not having pain or contractions. WRONG!!!!! But I trust her and go back to the movie.

I go to sleep and throughout the night continue losing more mucus the few times I get up to go to the restroom. I wake up in the morning. I have blood tinged mucus. I know this isn't good. I call the doctor again and tell her what I've noticed. Again she tells me I'm probably fine but to just go to Labor and Delivery to get checked.

I go to Labor and Delivery by myself. I tell MG I'm just going to get checked. No biggie. He was working on moving us that day. I didn't want to alarm him or his parents, who were helping us. I make it to the hospital. I had some trouble finding where I needed to be. The hospital was pretty deserted at 9am on a Saturday. Eventually I find it and they check me in. I sign some paperwork for me, then they hand me a stack of paperwork "for the baby, just in case". I look at her like she slapped me in the face. Remember, I was just being a paranoid pregnant lady. This baby was not coming today! I go ahead and sign the pointless baby paperwork. They take me back and hook me up to a monitor.

Baby is fine, heartbeat is fine, no contractions. Woo hoo, just being paranoid. I had a cookie cake to purchase and the sooner I could be on my way the better! They wanted to do an ultrasound just to be extra cautious. I wait for the tech to come with the ultrasound machine. In the meantime, I text MG and tell him everything is fine, no worries, waiting on ultrasound. . .

Saturday Morning

We love our Saturdays!

Channing's Stats

I'll get right to it. Channing is awesome! She is really kicking this whole preemie thing in the butt. Someone forgot to tell her she was born 13 weeks early and shouldn't be doing so many great things so soon! Channing went to Development Clinic on Tuesday. This is a follow up clinic for babies that spent significant time in the NICU. She was seen by several specialists including an audiologist, a speech pathologist, an occupational therapist and the developmental pediatrician that followed her throughout her NICU experience. Here's how she scored:
- 70th percentile in overall development. This is the big one. Her OT said most 26 weekers score in the 10-15% range at this point.
- 75th percentile in weight for her adjusted age.
- 95th percentile in height for her adjusted age.
- 95th percentile for head circumference.

We feel so extremely blessed that she's doing so well.

We bought Channing a baby pool and invited friends over. As you can see she's not in love with it.


Trucker was so happy to have people to play with in his backyard.


Channing's bestie Jillian. She's older and super cool.