Thursday, April 24, 2014

This is Our Trial

It's hard to write those words. Because labeling it as a trial means admitting that right now is hard. But it is hard, and that's OK. It's been almost a week since finding out that our baby (the one residing in my uterus), has mild ventriculomegaly. It's hard to be sitting here and just waiting to see how this is all going to turn out, but there have been so many blessings that have already come to pass over the last few days that I know that this trial is specifically for Derek and I. And knowing that means that we're going to be able to continue  to persevere through it. 

Who would have thought that parents all over the country are bringing their babies with hydrocephalus and ventriculomegaly to Duke specifically to be able to get the best care possible? Who knew that Duke was pioneering stem cell and cord blood research to be able to repair damaged brain cells due to this condition? It brings us so much comfort in knowing that Heavenly Father has placed us here in NC so that we would be able to get the best care possible for our daughter. 

Another blessing from this has been through our insurance company. When finding out there was something wrong with our baby, I automatically started stressing out about all the medical bills we were going to have. Two nights ago Derek and I sat down to hash through all the details of our insurance plan to find out that our plan has a $5,000 out-of-pocket maximum! That means once we pay that amount, the plan will pay 100%. Before knowing that, I knew our baby was going to need lots of dr visits, tests, scans, and so many other things. I knew it was going to be expensive and had just accepted the fact that we were going to be $100,000+ in debt. When we found out the absolute max we would pay was only $5,000, I almost cried. Seriously, money stresses me out to no end, so this was a huge blessing.

Basically Heavenly Father is involved in every detail of this. I could go on for 12 more paragraphs about the other crazy and amazing things that have happened over the last few days, but lets just leave it with the fact that pretty much every aspect and detail of this has already been taken care of- finding doctors, treatments, finances, we've already been taken care of on every end. The only thing that is left for Derek and I to do is to continue praying and believing that this will turn out alright. We have to put faith to action and keep doing the small and simple things (which sometimes aren't so simple #amiright?)- prayer, scripture study, FHE, they're all on hardcore repeat over here. I have hopes that if faith the size of a mustard seed can move an entire mountain, than my faith, the size of I don't even know, can shrink a brain ventricle 1mm. That's all we need guys 1mm!

Wednesday, April 23, 2014

Casual Maxi Skirt

My PSA to all pregnant ladies is this- if you're wearing pants, and not maxi skirts, you're missing out. I've been pretty much living in the two that I own for the last few weeks now and I have no regrets. They're perfect to be dressed up for church, and you can even dress them down for a casual everyday look. They're light and breezy for summer, which is nice since I will not be rocking shorts with these swollen ankles. Right now you can get this maxi skirt on Amazon for only $6 with free shipping. I didn't get paid to tell you that either, so just consider that a thoughtful little gift from yours truly!

Shirt: Target (Buy Here)| Tank: Forever 21 (Buy Here)| Necklace: Baublebar (Sold Out)| Maxi Skirt: Sexy Modest Boutique via (Buy Here)| Shoes: Target (Buy Here)

Thanks for reading!

Tuesday, April 22, 2014

Making Memories| A Flammily Picnic

Over the last few days I've found myself staring at Kyle and just being completely enamored at what beautiful, happy, perfect little boy he is. He brings so much joy to our family, and we love him so much. I realized that I don't want this pregnancy to just go by and the only thing I remember is the worrying about dr visits and planning for baby sister. I want Kyle to know how much we love him, and I want to remember all the quality time we've had over these next few months. 

In order to remember quality time though, you have to have it. Last night we decided to slow down and switch up the dinner routine and have a picnic dinner out on the patio. I wanted it to be a fun and new experience for Kyle so we got some more Fruit Shoot (currently his favorite juice) at the store, made some yummy sandwiches, and had some apple slices. It was the perfect night filled with watching cars, listening to the "choo choos", and pointing at airplanes. I love watching this boy grow and seeing the things that excite him!

These sandwiches are the perfect way to use up those Easter leftovers. Throw some ham, cheese, and Hawaiian rolls together with a yummy sauce in the oven for a few minutes and you have the most delicious leftover creation you've ever eaten! Kyle, Derek, and I were all fans! 

12 Kings Hawaiian Rolls, sliced in half
12 pieces of ham, sliced thin
6 slices of provolone cheese, sliced in half
4 tbsp butter
1 tbsp brown sugar
1 1/2 tsp Worcestershire sauce
1 1/2 tsp Dijon mustard

Preheat the oven to 350°, slice the rolls in half, slice the ham, and cheese. Put one piece of cheese and ham on each roll and then put the top bun on each. Place buns in a 9x13 baking dish. Melt the butter, mustard, brown sugar, and Worcestershire sauce in the microwave for 30 seconds.  Brush the tops of the buns using a pastry brush with the butter mixture and bake in the oven for 10 minutes until the cheese is melted. And then enjoy your amazingly delicious sandwiches!

While compensation for this post was provided by Robinson's Fruit Shoot, all thoughts and opinions are my own. 

Monday, April 21, 2014

Neon on Neon| 23 Week Bumpdate

Things have been pretty inconsistent and crazy over here on the blog lately, but so has our life. So bare with me as I try to get this thing back on track this week. I want to say thank you to everyone who has showered us with so much love and support over the last few days since we got the news about our little girl. So many little pieces have been fitting together perfectly since finding out the diagnosis. We're going to be in great hands, I can already tell. 

Shirt: Target (Buy Here)| Tank: Forever 21: (Buy Here)| Pants: Pea in the Pod via Destination Maternity (Buy Here)| Shoes: Keds (Old)| Necklace: Baublebar (Sold Out)

How far along? 23 weeks How big is baby? The size of a spaghetti squash Total weight gain? 17 pounds Maternity clothes? Definitely for pants, not as much for shirts Sleep: Not as smoothly since finding out about the baby  Best moment this week? Celebrating Easter, and counting our blessings Food cravings? Easter candy! Food aversions? None Symptoms? None Gender? GIRL! Movement? Wiggles all the time! Have you started to show? Yes! What are you looking forward to? Another ultrasound in 3 weeks! Next appointment? April 30th. We're going to be having appointments all the time now between going to our regular doctor and specialist, it's going to be insane.

Friday, April 18, 2014

An Uncertain Diagnosis: Ventriculomegaly

It all started last Wednesday. We went to the doctor for our 20 week ultrasound. The dreaded ultrasound that tells you any possible problem that could go wrong with your baby. The doctor does the ultrasound for 2 minutes before finding a spot in the brain he didn't like. He said that he thought he was just being paranoid but that he was going to send us over to Duke Perinatal to get a better ultrasound just for the "1% chance that it's what I hope it's not" (Doctor's words). 

That 1% chance didn't calm me at all. I've always felt my entire life that I was going to have a child with special needs. So when we waited the day and a half to get our second ultrasound, I didn't have high hopes that the prognosis was going to change, and it didn't. The ultrasound tech at Duke found the same spot our first doctor did. She then went to get the specialist that was going to be working with us and he explained to us that our baby does in fact have Ventriculomegaly. This means that one of the ventricles in our babies brain is slightly enlarged which will allow excess water to pool in the brain which can result in permanent brain damage. The good news is that our baby could also just have naturally larger ventricles and she could just be normal and fine. The ventricles could also shrink before birth, and she would also be fine. But there is a risk of her also being severely handicapped so this diagnosis is so vague and we really won't know more until the pregnancy progresses and until after delivery. 

I received an amniocentesis on Friday to see if there were any genetic/chromosomal reasons for as to why this happened. We won't get the results for up to 10 business days, but will be sure to update when we learn more. The good news is that the baby looked 100% normal, fine, and healthy on the ultrasound except for the one ventricle in her brain which indicates to the dr that this isn't a chromosomal abnormality, which makes for a better prognosis looking forward for a positive mental development of our baby. 

For numbers sake, so you know where we're at, the normal range for brain ventricles is 4-8mm. The upper limit of what they will accept as normal is 10mm. We're at 13mm. I've read since being home that 12mm and under has an excellent prognosis for normal cognitive development after birth. We're only 1mm away from that! Such good news right? So if everything stays the same so far, and doesn't worsen through the pregnancy, or if the ventricle luckily shrunk down just 1mm, we would be in the excellent territory! 

On the other side of the spectrum, ventriculomegaly can progress into hydrocephalus, which would require an MRI and shunting at birth (shunting still may be required if it doesn't progress into hydro as well..) to reduce the water levels in the brain and then from there, the outlook for hydrocephalus is well... not as promising. 60% chance at best for normal cognitive development at that point. Which yes, is above average, but not good enough when your talking about your child's entire livelihood. 

The good news is that there is nothing that I could have done differently to prevent this. It's a random occurrence as of now, until we get the results from the amniocentesis and if they state differently, than it's not a random occurance, but still completely nothing I could have done about it.  

More good news is that as I look online for stories from other moms going through ventriculomegaly, they all basically say that they're babies did need physical therapy to help them out, but they were pretty much on track and normal by the time they were 18 months. I've tried looking for the bad cases where moms haven't been able to get their kids on track, and haven't found those stories yet. I'm hoping that if this stays as ventriculomegaly, we won't have a horror story or anything to worry about. It's really the development into Hydrocephalus that scares me, I don't want that, at all. 

The worst part is just that we're in a huge waiting game. We have to wait a few months just to see the baby and get a better idea of what we're looking at. We're most likely not going to be able to tell the baby's cognitive ability just by looking at it, so we're going to have to wait at home for a few months to see if they're hitting those developmental milestones to know whether they're on track or not. 

It's easy to say, "why us". In the last 24 hours I've gone back and forth from being upbeat and positive, to crying, to grieving the possible life this baby may not have, and then back to positive again. And that's just probably how this entire thing is going to play out over the next few months. The biggest thing that we need to do though is just have faith that everything is going to work out. We need to have faith that the ventricles will either get smaller or stay the same. We need to have faith that we can handle this. Faith is the only constant we have right now.