It's been a year.

My beautiful daughter Zoe turned a year old on May 19th. When I look back it seems like the year has gone so fast. However, in the moments of dealing with her metabolic condition it seemed like the days and minutes would never pass fast enough.

It's crazy to think that a year ago, Derrick and I received a phone call from a specialist in Sacramento telling us that, based on Zoe's newborn screening results, he was almost certain that she had a condition called Glutaric Acidemia Type 1. This is the first time I've ever written about those first few months in detail. I think I'm finally at a place where I can look back at it with peace and hope.

I remember that night so vividly. Zoe was probably around a week old and we were feeling Judah's stress of not being the only kiddo in the house any more. I asked my sister if she would watch Zoe for a few hours while we took Judah out on a "date". Derrick, Judah and I got dinner and took it down to the sundial bridge and just enjoyed each other. I remember having that "full heart" feeling. We had a wonderful son who we adored and we just added a beautiful daughter to the mix.

When we came home from our date with Judah I had noticed that there was a message on our answering machine. It was a man named Dr. Eswara. He had a thick accent so it was hard to understand his message. I remember hearing "your daughter Zoe...newborn screening results...serious metabolic condition...call me right away no matter what time". The "call me right away" was what made my heart sink. It was 7pm when he had left the message and in my logic, a doctor would only have you call that late if it was an emergency.

It was hard to understand Dr. Eswara on the phone. Primarily because of his thick Indian accent but also because I was crying in shock and disbelief. How could anything be wrong with this beautiful baby? The Dr. asked that we get he blood drawn as soon as possible and bring her to Sutter Memorial in Sacramento within the week. It all seemed SO serious. I took it seriously with words like "possible brain damage, physical handicap...death".

We took Zoe to Mercy Medical the next day to get her blood drawn. She had only left there a little less than two weeks ago after being born. When we registered her to go to the lab the admitting clerk said "is she here for a jaundice test?". I wished that was it. I wished that it was a simple as seeing if she had jaundice. Instead, we were trying to figure out the seriousness of this 1:100,000 genetic condition that Zoe had.

The blood draw was awful. Her little arms where still so tiny and she screamed until she lost her breath and the screams were inaudible. Derrick and I bawled. As we left the hospital we passed a little granny in the hall. "Another lucky customer!" she said, referencing our new bundle of joy. We felt like the most unlucky people in the world. Our eyes were wet with sadness and grief instead of joy.

I think that's the thing that was the worst about all of it. Losing joy. Having a new baby should be a joyous time. Instead, I was filled with the worst fear and grief I had ever known. I had never cried so hard in my life. I'd cry in the shower or in the car so that Judah wouldn't see. Derrick was so strong for all of us but I know he was filled with the same emotions that I had. We were crippled. I knew we needed to refocus. I knew that our God was big enough to handle this. There were so many reasons that we could look to that could give us comfort. For example, since this is a genetic condition, Derrick and I both have one mutated gene in our DNA that created this condition in Zoe. The odds of a child having this were slim to none, as I stated previously, 1:100,000. How could I deny that God had brought Derrick and I together for a reason? God made Derrick and I knowing about this gene. God knew that we would find each other. I found comfort in that. I also found comfort in an encouraging phone call that Derrick received from a friend. He reminded Derrick about the fact that we had chosen Zoe's name before she was even born based on it meaning. Zoe, meaning vibrant life and Nikole, meaning victorious. Derrick's friend told him "Derrick, that was God's promise to you before she was even born". I clung to that.

In the months following the devastating news I would pray for Zoe, A LOT. They were simple prayers. The main prayer simply a proclamation over her, "You are fearfully and wonderfully made, you were knit together before I even knew you." I think that prayer was more for me than her as a reminder to put my confidence in my/her creator. Zoe has been drenched in prayer by some really amazing people/believers and by some that don't even seek the Lord that often but knew in their hearts is was important to pray.
Those prayers have been heard and felt. Thank you.

We still have a long journey ahead of us. This is a genetic condition, so it's not like it goes away, it's in her DNA. However, I am believing that she will be and exception to the rule. I remain optimistically cautious with her. If Zoe gets really sick (i.e. fever over 101, vomiting etc.) she can be in danger of having a "metabolic crisis". If that happened we would have to take her to the hospital right away for and I.V. and meds. Consequently, I get really nervous about putting her in any kind of childcare, which has limited my availability to do things that I wouldn't have thought twice about doing with Judah. However, if missing church for a year or two, or not being able to go to the gym as frequently is the price I have to pay to keep her healthy, it's a small price to pay.

Today, Zoe is doing AMAZING. Her lab results continually show that she is processing Lysine/Protein at a normal level (just like any other child would). Every time we 'challenge' her system to see what she can handle her test results come back better than ever. The dietitian and Dr. are always surprised. I can hear it in their voices when they call. Zoe is our little anomaly.

She's walking all over the place (which is a praise in itself since most GA-1 kids are developmentally delayed). She's a happy little monkey with tons of personality and spunk. She is truly living up to her name. Happy Birthday Zoe Nikole, you truly are a miracle, vibrant and full of life. Most of all, you're victorious! Praise God!

What will they do without me?

On May 15th Derrick and I will celebrate our 9th year of marriage. My parents generously paid for a two night stay in a B & B as an anniversary gift. It'll be the first time I've left Zoe for longer than a few hours. It makes me nervous. I'm trying to be excited about the time away but our trip away requires so many preparations on my part.

Zoe's still nursing. Not much, but she still does about 4 times in a 24 hour period. I emailed her dietitian to see if there are any formula options that would be safe for her and her metabolic condition. The dietitian said that we could give her Enfamil LIPIL because is has the lowest amount of protein per gram.

So, I went to Target yesterday thinking it'd be good to get a head start on getting her used to the formula. First of all, I can't believe how expensive formula is and it made me grateful that I was able to nurse both my kids for the mere financial aspect. Unfortunatly, Zoe wanted nothing to do with the formula which means one thing for me...the pump.

I have such disdain for the pump because when they first diagnosed Zoe with her disorder they made me pump for every feeding and give it to her in a bottle. In short, it sucked (no pun intended)! However, in order to have a weekend away, me in and Mr. Pump must get reaquainted. Not to mention that I have to bring it with me and pump while I'm gone so that I can still maintain my milk supply for Zoe when I get back (Sorry if this is too much detail for some).

So, as you can see, as blissful as a weekend away sounds, the true reality for me is that it's still A LOT of work. Don't get me wrong, it's worth it and it'll be good to get away. Sometimes I wish it were just a bit easier. What does Derrick have to do to get ready? Oh yeah, not much, probably just pack a pair of clean underwear and a toothbrush. Lucky dude!

Watch out, I'm going Country!

Derrick and I had the privilege of seeing Trace Adkins live last Wednesday night. This was a HUGE stretch for us because neither of us are country music fans. As a matter of fact, Derrick loathes it. However, as many of you know, Trace was on this season's "Apprentice" and when our friends heard that he was coming to town we decided we had to go see him.

Our tickets were AMAZING. I've never been that close to anyone famous. Redding Convention Center isn't huge by any means but we were three rows from the stage. It was exhilarating. Trace started us off with "I got my game on!". Immediately I was impressed by the man's mere stature. If you've listened to Trace before you know he's got about one of the sexiest voices out there. Couple that with the fact that he's an enormous, hunky man and you've got an instant fan. I only had two issues, one: the hair, I'm just not a long hair fan and two: the jeans. the man's pants were so tight I was waiting for the "censored" sign to come out. However, about the jeans, I could tell that the rest of the ladies up front LOVED them.

Like I previously stated, Derrick and I are not country fans and consequently knew not a single Trace Adkins song prior to going to the concert. It was a little bit of a bummer because that's the great part about concerts, getting to sing along with the actual performer. Well, that didn't stop Derrick and I. Trace did the typical crowd/performer thing where they sing a line and then put the mic out to the audience to finish it. So, here goes Trace, "Her favorite color is...", we chime in, actually we scream "RED!!". We were so proud that we could look like we fit in. Until the end of the song when Trace sings out the whole line "Her favorite color is...CHROME!". I looked at Derrick and said "welp, so much for pretending we're fans, the gig is up now".

Of course, the concert wouldn't have been complete with out a few autograph freaks. There were middle aged ladies, all sweaty from dancing frantically holding a sharpy pen and Trace's picture. It was interesting because I found myself thinking "when do the expect him to sign those things, I mean the man is singing for crying out loud!" However, topping the list of desperate autograph junkies were two people. The first was a lady who brought her baby. The baby couldn't have been more than 11 months old and now thanks to his caregiver will be deaf because he saw a concert he'll never remember. This lady was pimping out her baby in order to get an autograph.

Our other favorite autograph lady was this gal one row ahead of us holding a file folder she had written on and a crumpled up baseball cap. Every time Trace would walk across the stage in our direction her arm would shoot up holding that sign with serious conviction. I couldn't see exactly what the sign said but it look something like "Please sign this hat for my mom" or something like that. But the best part was, on the side of the folder/sign that faced the audience she had written a huge "PLA". In my head I played out the scenario, here's how it went..". Lady: Oh, I'm so excited, Trace Adkins...now I just have to find something to make a sign. Oh, look a file folder this will work. What should it say. Hmmm, "PLA..." Damn it! I misspelled 'Please'!" So all night long, Derrick and I made fun of the sign lady. I know, we're jerks, what can we say. Derrick would look at me and say "PAH-LACE SIGN HAT, Pah-lace" as if that's how she talked. We're super mature.

So, I don't think we're full on country yet. But we are going to a rodeo tomorrow and I'm pretty sure Derrick's gonna where tight wranglers, at least I hope. Until next time...