I know this blog is mainly about Miss Avery, but I have to welcome her new sissy, Lucy Vivian to the world. She was born on September 27th, and has brought us so much joy during a very challenging year. While we've had plenty to worry about besides Lucy's health, the fear of her being born with Peter's Anomaly or some other issue was always in the back of our minds. We held our breath as we waited to see her for the first time - since I had a c-section, we had to wait what felt like hours before they brought her over to me. We joke that she knew we were worried about her eyes, because she opened them for the first time when we got her, and kept them wide open for a really long time. What we saw I will never forget - crystal-clear corneas over her brownish-gray eyes. I am still amazed every time I look at her. Bright, red reflexes, no glaucoma and healthy retinas. We are so grateful for this, and the fact that everything else about her from her head to her toes, checked out totally healthy. We got the experience we never had with Avery; to have our newborn stay in the room with us, not hooked up to monitors or tubes. No bad news, no specialists, no sad tears. It was a totally typical experience, and we treasured every moment of it.
Like most new parents of two, we haven't been out much or spoken to a lot of people since bringing Lucy home, but it hasn't been a very easy month. When we do talk to anyone, we get the same reaction; "wow, you guys really can't catch a break!" And that's really what it seems. Practically since we rang in this year of 2013, we've had our bumpiest year since the year Avery was born. Most recently, Avery's had several weeks of illness that left us guessing each day if her shunt was to blame. Once you see your child wake up vomiting and lethargic and it leads to brain surgery, you will always associate those symptoms with brain surgery. No matter how many times the doctor tells you it's just a virus or it's common for kids in school - it doesn't matter. The memories of those symptoms leading to something serious are impossible to shake. So, with how often Avery has been sick over the last few months, we are constantly guessing what the reason is, and hold our breath each day to see what shape she'll be in. I started marking sick days on the calendar, and we are currently in our longest streak - one full week - (knock on wood) since July. There was so much going on in our lives in the week leading up to Lucy's arrival, but Avery being sick was the worst. Leaving her to go to the hospital was so hard, and thankfully nothing serious ever happened.
In addition to Avery's touch-and-go health, we have dealt with several other things. While I don't want to go into all of them, each one has challenged us in every way possible and taught me (if I didn't know it already), that we really can handle anything. I keep thinking that if one more thing happens to us, I'm going to fall apart, but I know deep down that I will not. Life keeps handing us challenges, and we keep dealing with them as they come. And we know it can be worse, so that's always in the back of our minds.
One of those things was Lucy's illness last week. When we brought her home, all perfect and healthy, we never imagined we'd be back in the hospital with her just two weeks later. But that's where we ended up last Tuesday night, after a long day of her acting sick, and eventually her fever went up to 103. We assumed she had caught it from her sister, who had become a walking germinator. We were warned that because of Lucy's age, she'd have to be tested for everything and be admitted. While we aren't strangers to watching our baby go through spinal taps and have blood drawn, it's still very painful to watch. We were told that the protocol for a newborn with a fever is all these nasty tests, plus putting them on proactive antibiotics. Which - sidenote - was NOT the case three and a half years ago when we brought Avery into the ER with a fever at 7 weeks of age. And she had had brain surgery with a leaking incision! We are very angry about learning this "protocol," because if Avery had received proactive antibiotics, she may have never developed meningitis, which is why she's going through all of her neurological issues today. (We have definitely stored that information for use later.)
Anyway, we found ourselves bunking at the hospital once again, only for poor Lucy this time. We had made plans for what we'd do with Lucy whenever Avery is in the hospital, but didn't really plan for the other way around. We haven't really told many people until now, but the final diagnosis was rhino-enterovirus that spread to Lucy's spinal fluid, which made it a viral meningitis. When I heard the doctor say this, I turned white. The word, 'meningitis,' is a four-letter word in our house. John wasn't at the hospital at the time, so I had to process this alone, and I proceeded to ask the doctor one. million. questions. She assured me that this was a totally different kind of meningitis than Avery's. It's actually the least serious, and they have to call it meningitis simply because where the virus spread to. Newborn's immune systems are underdeveloped, so they can't contain a virus like ours can. They assured us it's not uncommon, and very easy for her to get. But still, we were shocked and felt extremely guilty. How the hell can we end up with both our kids having a form of meningitis? We may have a cluttered house, but we sanitize, we wash our hands - we aren't dirty! After the doctors assured us over and over that we can't blame ourselves, we still do, but that's part of being a parent. Luckily, Lucy made it through her stay with minimal issues, and we were discharged two days later. I hope that was her last hospital stay. And Avery was happy to see her sissy home again, even though it meant that I follow her around 24/7 with sanitizing wipes.
We had also found out on the day that Lucy was born that my Grandpa Johnson was diagnosed with colon cancer. It had spread to other organs, and he was put on chemo pretty quickly. The day we came home from Lucy's hospital stay last week, we sadly learned that he had taken a turn for the worse. I was able to be with my family over the weekend and see him one last time, but he peacefully passed away yesterday. Our family won't be the same without him. He was a great guy, and I'm lucky to have been able to call him my grandpa. Your "Annabelle" will miss you, Grandpa.
John and I look at each other a lot lately and know what each other is thinking; "what the hell?" - but like I said, we just keep on going. While these events are the main issues, we have had many other things working against us lately, and testing our strength. I'm proud of us, but also hope that we are done being tested for a long time. I used to wish for a crystal ball, but lately, I don't really want to know what's around the corner. I will just know that we will deal with it and take one day at a time. I never thought I'd accept that cliche, but I don't really have a choice! For today, I'm grateful that we reached one week of Avery being healthy and she's even eating like a horse. Lucy is growing and back to healthy too. The sun is out. Not thinking beyond those things.
