Friday, February 15, 2013

Maren's 37th

I turned 37 just one day shy of Everly's 1 month birthday....

Can you tell?


Wait....look at those droopy eyes....


Sooooo sssslleeeepy.

Neeed to ssssleeeep.

But I'm up!

I'm up and turning 37.

With 6 kiddos, ribs, fries, pink lemonade in the fancy glasses....


And the most delicious strawberry shortcake in the known universe.


And it is on fire...and I have chunky upper arms.

And they won't be getting slimmer for a couple days because we have shortcake leftovers.

And it's my birthday and since I can't sleep, I will eat cake!

Thursday, February 14, 2013

Loved

You know what?

I feel loved. 

Loved by my mother-in-law and father-in-law. They drove up here from Arkansas to take care of my family while I was in the hospital giving birth to Miss Everly. They cooked and cleaned and entertained and loved on all of us.

When I came home from the hospital, I didn't bounce back quite as fast as I had expected and it was obvious I was still hurting...a lot. Sweet Mama Jean offered to stay and help an extra 3 days. I didn't even try to politely refuse. I was so grateful!


I love my husband's parents so much. I am thrilled that they are a part of my life and I feel lucky to enjoy their company whenever we get together. They are funny and smart and incredibly kind.


I feel loved by my mother.

She arrived a day after Jean and Joe went home. And she jumped right in and cleaned all my bathrooms. She organized my fridge and deep cleaned the kids' rooms. She held Everly while I took a shower and stayed home from church with me and held her for 3 hours so I could sleep, knowing that someone else was watching the time and I didn't have to stress about going over the 3-hour limit. I promise you I was knocked-out-dead-to-the-world the second my head hit that pillow.

She cried with me when I got the results from the lab tests. And she rejoiced with me when it wasn't something more serious.


When Laney asked her to play 'War' with her, she said, "Okay, Let's play for one hour."

An HOUR of war.

When I play war, I agree to one game and I do everything in my power to make it go quickly...like losing.

Loved! I feel loved!

And the meals....mercy, the meals that flowed into this house.

Delicious and hot, thoughtful meals that made this whole experience infinitely easier. And when the very last meal was delivered from my wonderful Relief Society sisters...my neighbors organized and brought me meals for another 5 days!

Good gravy, the love.



Wednesday, February 13, 2013

MCADD

On Tuesday, 8 days after Everly showed up, I made myself put her tiny little body in that carseat and I took her to her 1 week check up with the pediatrician. Admittedly, I was a little freaked out because of Anna's awful experience with getting sick at such a young age. And doctor's offices are a germfest.

So I kept her in her carseat, covered by a think blanket and I nervously scanned the waiting room, visually identifying any possible threats...flu, coughing children, facemasks, the plague.  I was fully prepared to bolt.

I tell you, motherhood does thing to you.

It makes you a freak.

We wait FOREVER, as we always do, and we finally see the doctor. She looks her over. Messes with her hips. Makes her cry. You know how it is. Then she declares her perfectly perfect. And we are on our way.

We return home and back to the safety and care of Grandma Kathleen. The real mom.

All is right with the world.

The next day the pediatrician calls early in the morning. She says a whole bunch of things and I fail to process 95% of it. The 5% I did get was that there was something wrong. And I needed to take Everly to see a geneticist.

I said, "Okay, thank you for calling."

And then I hung up and I stared at the countertop and I realized that I had no idea what she had just told me. I had to call her back and ask her to tell me one more time. I knew I would need to tell Mark and I wanted to be able to give him the details and I also knew full well that I had every intention of googling the heck out of whatever it was.

It was MCADD.

And I googled it.

And I bawled. I called Mark and he told me that it would be okay and I'd bet a million dollars he hung up and googled it.

Then I bawled again and I told my mom.

And then I sat on my bed and nursed Everly and poured over everything I could find about MCADD.

In a nutshell, having MCADD means that she cannot breakdown medium-chain fats. So, she can't use her own body fat for energy. And she would have a hard time processing food that is high in fat. Most importantly, she always needs to have food in her stomach or she could have a metabolic crisis (fatigue,  fever, vomiting, coma, death). If she gets sick and refuses or is unable to eat, she could have a metabolic crisis as well, since the body burns energy faster when fighting off germs. To avoid this, when a child with MCADD gets sick and can't eat, they need to be hospitalized and put on a glucuse IV until they are able to eat again.

We went to the geneticist the next morning, under the impression that we were simply retesting to rule out or confirm the original diagnosis from her newborn screening. Instead, we were plunged right into appointments with a genetic counselor, and geneticist, and  a dietician. My head was spinning and I felt confused. Finally Mark said, "I'm sorry. I thought we were here to retest and find out if she even has this."  The genetic counselor, Kaitlin, looked at us with compassion and let us know that Everly's numbers were such that put her in the "high risk" category and it was very likely that she had the disorder. I don't remember too much after that.  I had been hanging on to the possibility that it was a false positive.

We made it though the appointment. And then we made it through the awful process of getting a reasonable blood sample from our tiny 9 day old baby girl.

I'm not used to crying in front of people.

And then we waited. For 7 long days.

We prayed like crazy and our wonderful families put her name on Temple prayer rolls and fasted for her. My sweet Ethan fasted for her on his own on a school day. I read a ridiculous amount of personal stories of children that have MCADD and I began to hope again that it might turn out to be a false positive. Maybe her numbers were due to my liver problems during the pregnancy? Maybe the machine was broken? Maybe her sample was switched? Anything.

Finally Friday came and we got the results. She has MCADD. I admit I fell apart on the phone. That poor genetic counselor. She must deal with a lot of crying mothers.

Once I got off the phone, and I had a good cry. (My mom was here. I can't tell you how much that helped.) And the something weird happened.

I felt at peace.  All of those prayers caught up to me and I recognized the blessings that we have received in all of this. Mainly that MCADD can be an awful, devastating, tragic thing....when you don't know about it. But we do! She was born in a state that does expanded newborn screening. Because of that, we have all the knowledge and tools to keep her safe and healthy and alive!

So now we are feeding her every 3 hours. And let's be honest...this is nothing new for us. My babies are voracious eaters and I nurse round the clock for....forever. So this isn't really a practical change for us. It's just a change in the way I think about it. I set my alarm for 3 hours after she eats at night just in case she sleeps longer than that....which would be a first. Instead of being resentful of waking up at all hours, I feel relieved that I am able to give her what she needs to have toher here with me and in my arms.

Things will get easier as she gets older. But, hey, that's really true of all kids.

Since then, we have had all the other kids tested. MCADD is a genetic disorder, so there is a 25% chance that they have two functioning genes, a 50% chance that they are carriers (which Mark and I obviously are) and a 25% chance that they have the disorder.

It was weird going into the hospital and having my entire family get their blood samples taken one at a time. They were amazing. They made me ridiculous proud. The older ones were brave for the little ones and the little ones didn't shed a tear. Anna came out and cheered, "I DID IT!" and everybody clapped! You can bet there was ice cream for everyone on the way home.

The tests all came back negative. Although I got the feeling that Mathew was a little disappointed that he missed out on a chance to have a medical excuse to never fast again.

When all is said and done, I am grateful for Everly. She is our last little pup. She is soft and warm and squeazy. I am so grateful that we know about her disorder and that she can live a normal life. I am so glad that I know how to keep her healthy. Life is good and I know God hears our prayers.




Friday, February 1, 2013

Everly's first torture...

I know that giving your baby her first bath is kind of a rite of passage. But it really is pretty awful. I have never had a baby who enjoyed this event.

She gets that shocked expression.


She tries in vain to nurse on my arm.


She flails wildly about.


And finally begins to accept her fate and wait for it to be over.


And it is back to being bounced and binky inserted.


And the payoff is that amazing Baby Magic smell and soft clean jammies.