I realize I haven't been posting on here for the majority of the year. If you haven't been following Facebook or Instagram, here's a recap of last year and where things stand as we look ahead to this year.
Camille started 2022 with her first full day at home. She was discharged from the hospital on 12/31/22 after a 3 week stay. She was still working on eating so she had an NG tube. It turned out, she just needed to come home, because all of that money that insurance wouldn't pay (and we shelled out) to have the equipment at home went to waste within the week. She started taking bottles like a champ and hasn't looked back since!
As January progressed we noticed her head seemed to be growing pretty rapidly. A visit to her pediatrician confirmed it was growing much fast than we'd expect. Her follow-up MRI and appointment with her neurosurgeon got moved up and I had my first "Where are you God?" moment. It appeared that the surgery she had in December wasn't totally working and that she would probably need a shunt to control the fluid in her brain. It was a tough time in general, being home with a newborn and not really seeing friends because of all the sicknesses that are rampant that time of year. Looking back, God met me in those dark moments through texts and calls from trusted friends and family and firmed up that trust and faith that start to wane as we get complacent with things going how we want!
The good news was that surgery wasn't emergent, so we watched and waited and then on Feb 23, she had surgery to have a shunt placed. She did great with the surgery and was discharged the next day. During the week that followed, we noticed the swelling around the site of the surgery hadn't gone down. Her surgeon just wanted us to watch it, so we did and that very next week ended up in the ER (overnight) and admitted the next day, for fluid leaking from her surgery site. They weren't really sure what was causing it, but went with the hypothesis that she had subderal fluid due to the shunt being set too low (not enough pressure in her head) that was pooling. So they turned her shunt up and wrapped her head tightly to give it time to heal. Next week - imagine our surprise to be back in the ER for leaking fluid again. During this horrific visit I was on my own with her (Seth was caring for Colton at home) and they wanted to drain the fluid that had built up and then add a stitch to hopefully keep it closed. I asked the resident about numbing the area first and he said that was just another needle she would have to endure, so it was better to just quickly get them done. Unfortunately, he didn't think to ask for a nurse's or tech's assistance and instead asked me to "hold her down". Yep - that happened. And I did it. And we survived. We spent the night again in the ER, but her surgeon sent us home the next day (no beds in the hospital anyway) after turning the pressure up again and hoping for the best. Less surprisingly, we were back in the ER the next week and would remain in the hospital through the beginning of April. Her surgeon was on vacation for this ER visit, but we were very familiar with the attending surgeon and thankfully Seth's sister (who's a pediatric nurse at Hopkins) is one of his favorite people. To say we got the royal treatment would be an understatement. His approach was basically that our hypothesis and treatment plan was probably backwards, since it was still not working and her swelling and fluid leaking were just getting worse. He also wanted to go in surgerically and clean out the wound in a very quick procedure. We were the first case the next morning. He did take a fluid sample to test for infection. Anytime you have an open wound, infection is possible, and spinal fluid infection means you have to throw the shunt out and place a new one. At the almost 24 hours post surgery mark, she was clear of infection and we were planning our escape home. Unfortunately, the positive result showed up and she was on the docket for another surgery to remove her shunt, have a temporary external shunt placed, have a PIC line placed and start IV antibiotics. I lived at the hospital with Camille until she was completely infection free, the new shunt was placed on 3/30 and we were discharged on 4/2. It was tough. She couldn't be picked up very often, because the external shunt had to be rebalanced every time you moved her. She had lots of MRI's, lots of tests run and through it all, she showed us what a fighter she was. She was the happiest, not sick, but difficult to treat baby the floor had. We had some great visits - a dear friend who I never see came and sat with us in the ER while we waited for the plan this time. We got bonus visits from Seth's and my parents and sisters :-) A different family member would come stay with me most nights (those hospital night time feedings are rough - especially when you can't pick up baby and I had to pump on top of giving her a bottle). Seth's sister would come up after her shifts and care for Camile so I could go home and take a real shower and a nap and play with Colton. We got a peek at how strong Camille really is and a reminder of how many miracles our God is doing in her life. This all happened right when my 3 months maternity leave was ending, so I was starting back to work (in a limited capacity) from her hospital room. Thankfully my boss was extremely flexible and understanding. I learned I can do really really hard things with God who gives me strength. I saw the goodness in people - from the extremely caring nurses and other staff to our amazing friends and family who cared for us. Honestly, rather than worry, I was filled with gratitude at almost every turn. That's God people. Don't get me wrong, I couldn't wait to go home - but He sustained us!
The rest of the year was so much less ummm...shall we say...eventful, but with lots to celebrate. We got to travel this summer to Ocean City to see Seth's parents and Georgia to see my parents (Seth was working so I drove the 10+ hour drive on my own with both kids - a story for another blog) and eventually Virginia in the fall. We all got COVID and a storm promptly knocked out our power for the next three days. Colton started Kindgergarten and has been thriving. Camille had quarterly MRI's and follow ups with her surgeon and everything with her shunt has stayed stable. It's currently set at the highest pressure and we'll just continue to monitor with her surgeon every 3 months. She still sees PT through the infants and toddlers program every 1 to 2 weeks and a nurse checks her development every month. Although she's at the later end, she's hitting all of her milestones. She nods yes and no (mostly no), signs for "more" and "all done", eats absolutely everything, pulls up, climbs and cruises on everything, can crawl but prefers to scoot still, stands for a few seconds independently, pushes walking toys around and pretty much brings delight everywhere she goes. She loved eating cake on her first birthday and screams if she sees me eating a treat and not sharing. She wears a doc band (helmet) to correct the flattening of the left side of her head, from laying on that side for so long. She gets that off next week on 1/11! All in all she's a good sleeper, but we've had a few horrible nights of screaming sprinkled in recently, which is par for the course with babies.
We ended 2022 with a family dance party at home, while we were isolating after a COVID exposure. Thankfully we have stayed negative. A few nights ago, Camille had a really terrible night (gas probably?) and it sent me into my first downward spiral in a while. I don't know about you, but when I lack sleep, my thoughts get out of control, the what ifs run rampant and I can tend to struggle with some anxiety. It was a good reset for me though. I stopped myself mid spiral and refected on how good God has been to us this past year. It was not easy, but He was near and we all grew. It also brought to light a few areas I want to work on this year. I feel like 2022 was a lot about survival. And we got through and had some really bright moments. This year, I want to be about thriving. For me personally, that means always coming back to choosing joy, especially around my family. For my family, I think that means relying on God together and growing in our walks with Him, really celebrating who He is and what He's doing in our lives. I think it also means investing in a church together and getting involved. Expecting God to move in big ways and being on the look out for what He's doing around us. Being great friends to the people in our lives. I'm starting the year off with a promotion at work, so being a good boss to my department and helping my team thrive is part of my thriving as well.
Some ways you could pray with us this year:
- Please keep praying for Camille to stay on this great trajectory of growth and development! She sees her neurology team at KKI on Monday 1/9 for her 1 year assesment
- On Monday 1/9, she also has her follow up with the eye doctor. The glassed don't seem to have helped her eye from crossing, so we're expecting a new plan.
- Camille's next MRI and surgery follow up is 2/28. She'll have her usual ultrafast mri (usually takes about 10 minutes) and she'll also have a more detailed MRI of her cervical spine. In her MRI in May, the radiologist noted a small fluid pocket that was partially visualized in her imaging. It was not seen in the Aug MRI (based on where it is located on her C-spine), but in her Nov MRI report, the radiologist said it looked like it had grown about a mm. Her surgeon wasn't worried about it, as it doesn't seem to be causing her any pain or limiting movement that we know of, but wants to monitor. Pray that she won't need surgery to resolve this issue.
- Pray that our whole family would grow in our walks with the Lord. We've been churchless for a little bit, so pray we would commit to and get involved in a church.
- Pray that I would balance my new role at work and my family well.
- Pray that our eyes would be open to what God is doing around us and how He wants to use us.
It's been amazing to see and hear how Camille's story has touched others. Thank you for being a continued part of that! 💖
