Have a little faith
I’ve been super quiet on here lately because well, life. Honestly, we’ve been going through a lot over in our household. First all 4 kids caught croup which led to many sleepless nights, so that was a ball of fun. I seriously feel like we have lived at some sort of doctor’s office for the majority of the last couple of months.
We went to get 3 out of the 4 kids evaluated for some type of therapy. We got Gray evaluated for speech and occupational therapy which hopefully he’ll start receiving here soon, Charlee got evaluated for physical therapy and it was recommended that she receive it, and then I got Crew evaluated because he wasn’t putting any weight on his legs and I thought it was because he was breech my whole pregnancy, turns out he’s just lazy, that little turd. After working on it at home, he is now standing on his legs and jumping in his jumper so that was a nice little relief.
I’ve been pretty open about what’s going on and the struggles we are facing because I think it’s important to be open and honest. Plus, if you aren’t open and honest, how are people going to know how to help? It is so easy to hide behind the pretty stuff or only show your highlight reel on social media. I try and show as much “realness” as I can without basically recording my kids throwing epic tantrums because let’s be honest, when they do that, I go and hide in the bathroom or pantry until they finally stop whining. And to be super real, my kids are probably on my phone watching another kid unwrap toys just so I can get a minute of silence.
I wanted to write about what we are going through with Charlee to share with you, but mainly, as much as I don’t want to remember this time in our lives, I kind of do. I don’t want to remember the difficult doctor’s appointments or me laying on my child during MRIs while she’s screaming. I don’t want to remember seeing the doctors taking my sweet baby to the OR or the 2 1/2 hour anxious wait in the waiting room. But I do want to remember the love and generosity we were shown by numerous people near and far. I want to remember the 2 weeks of hot meals family, friends, and neighbors brought us. I want to remember the time that our pastors and friends laid hands and prayed specifically for our baby girl. I want to remember the overwhelming feeling of comfort the holy spirit surrounded us with knowing that God had our girl in his hands.
A lot of people have asked how we caught what was going on with Charlee. Well, between her 4 and 6 month appointment, her head had grown at a rapid rate. This is concerning because it meant fluid back up in her brain or worse, a tumor. Of course, I spent countless hours on the internet googling all the different scenarios that this could have led to which I do not recommend EVER doing. Literally you find yourself down this dark hole of webMD or wikipedia or articles basically saying your child has the plague. Kidding, but not really.
We were immediately sent to MUSC to have a head ultrasound done. They can do an ultrasound on a baby because the soft spot is still open so they are able to see through the skull. Unfortunately, the radiologist came in and said they saw enlargement in her brain so we were now going to have to be sent a referral to get an MRI. We were lucky enough to get an MRI the next day, although they “fit us in” and it was at 1:00 which meant that Charlee couldn’t eat all day because she was going to be sedated. Wanna know how fun not feeding a 6 month old is who doesn’t understand why her brother is getting a bottle and she’s not? Spoiler alert, it’s the worst thing in the world and probably the least fun thing I’ve ever done in my life.
We had an MRI on a Friday and then an appointment with her neurologist on that Monday. Granted it was the next business day, but man that was the longest weekend ever. We met with the neurologist super early that morning where she informed us that Charlee had a benign cyst in her third ventricle which was causing the fluid not to drain properly and thus the reason why her head was growing so rapidly. She told us to help drain the fluid, they would go in, make a pathway through the cyst so that the fluid had an escape route. They do not take the cyst out because it would cause too much damage and that is not something they're wanting to risk. If the surgery was a success, then YAY, but if not, our next option would be a brain shunt. So we made an appointment for the next week for her surgery but it was 9 days away. You guys, when I tell you that those 9 days lasted 999 days, I am not exaggerating.
While David and I were so glad to have answers, we were so heartbroken that our little lady was enduring pain daily and also at 6 months old having to have this type of operation. I try to downplay the operation but I mean, they were going in her brain. Her brain y’all. Like, I’m thinking okay, one bad movement and she could be completely changed for life! That is by far one of the scariest feelings I’ve ever had. There was so much feeling of guilt as I walked out of that office. It’s not a surprise that our twins were a surprise and that the first couple of weeks I had some very negative thoughts about being pregnant. I felt as if this was my fault because I had those feelings.
For 9 days we rode an emotional rollercoaster. We were researching the doctor, the procedure, the side effects, and the outcomes. We were nervous and anxious, but we were also okay. We knew that when, not if, this procedure worked that Charlee would be out of pain and discomfort and that was worth it. Our faith was tested. And let me tell you, we had a community ready to help us pass the test. For those next 9 days we had people from near and far message us telling us that they were praying for us. My dearest friend (and co-blogger) came over and immediately prayed for us, set up a meal train so that for 2 weeks all we had to do is worry about our girl. We had neighbors whom we’ve never met sign up and bring us food. I had a college friend send money to Hannah so that she could stock my fridge with breakfast food so that the older kids were taken care of while we were in the hospital. My friend and pastor, Connie, made sure to check in and rally the church around us always praying for Charlee but always making sure to pray for me and my mama heart. Our pastor anointed our girl with oil, laid his hands on her head, and prayed so intentionally for her. My sweet friend Megan gathered the worship team as they were practicing and prayed for Charlee. I was picking up the bigs from MMO and the staff of women at Freedom stopped what they were doing and all hopped in our van, held hands, held my kids hands, and prayed for us. You guys, God showed up. And he showed up BIG. It brings tears to my eyes to think about it. There are no words to describe the feeling we had of being loved on and taken care of the way we have been, seriously no words.
I truly feel like in the past year I’ve grown so much in my faith and I feel like when you are on a spiritual peak, that’s when the devil wants to hit you hard. That’s when he wants to plant seeds of doubt in you. And to be honest, it’s hard not to harvest those seeds, but when you have a community behind you ready and willing to plant the right seeds, the devil has no chance. Matthew 17:20 reminds us that if you have faith the size of a mustard seed that nothing is impossible. And when our mustard seed was almost out of sight, we had people handing us theirs.
Needless to say, Charlee’s surgery was a success and she was a champ. Dr. Infinger (who is fabulous by the way) went in, put a hole in the cyst and immediately the cyst began to collapse allowing the fluid to start draining where it needed to be. She was happy with the result and told us that Charlee was probably going to start feeling immediate relief once she was awake which was such a reassuring thing to hear, knowing that this surgery was well worth the wait. Charlee will have to go in for MRIs every few months to make sure the fluid is still draining and that the cyst is not growing back together to create a blockage. We hope and pray that it continues to drain properly so that we do not have to endure another surgery in the future! While we assumed she got immediate relief, we didn’t know how long it would take for us to notice a difference. Well, two days after surgery, Charlee began to try and roll over, she is able to sit up for longer periods of time, tolerates tummy time (for the most part), has begun to talk more, and we even got to hear her first belly laugh. We feel as though her mood has changed tremendously and she’s a lot less cranky, although she likes attention, A LOT, and is VERY cranky when she’s not getting it. We are only a week out from her operation and she has already changed so much and we know that God has healed our girl and is going to continue to watch over her. He crafted her so carefully. He knew her before we knew her and He knows her story is one to share.
|Our happy girl before surgery!|
|Right after surgery, still coming off anesthesia. We could not talk or touch her, only look at her. If a child wakes up before fully coming off their anesthesia, it can put them into a delirium or in simpler terms, a REALLY bad nightmare that no one can wake the up from. If that happened, they would have to sedate her again and try it all over!|
|All smiles from our sweet angel!|
|Charlee's incision, or we like to call it her "shark bite".|
Again- we have been overwhelmed by the love and support that friends, family, strangers near and far have given to our family. We will never be able to thank you enough for your caring and kind words and most importantly flooding the heavens with prayers for our littlest love. You have helped us renew our faith in just how good this world can be and how God can miraculously bring all of his children together at any given time.
|How lucky are we to see that smile daily?|
I write all this down to remember this time and also, I feel it would be an injustice to not give God all the glory that He deserves, because truly, this is his handy work. I feel like I’ve truly been called to be a messenger, to tell the good news of just how good our God is. Because y’all, He is SO SO good!