I know I am repeating myself, but Avery has come so very far in one year. She is in a much better place today in all aspects of her life - she's healthy, her corneas have survived (for the most part) for over a year, her shunt has held up for 7 months and she's moving along developmentally too. She's learned how to walk with a cane, and is (finally!!) talking more and more each day.
When Avery was born, we were told she would see only shapes and shadows, and after her first brain surgery led to meningitis, we were told she may or may not meet milestones, and there was no telling how she would develop. Thankfully, she has done far better than those original prognosis, and although her future is always unknown, her life so far has been better than we ever anticipated four years ago.
We are so proud of her progress, and made this video to recap the last crazy, amazing, fun, challenging, roller coaster four years. Happy Birthday, Avery - we love you more than you'll ever know.
Sunday, April 13, 2014
Sunday, March 30, 2014
Goodnight Sunny
I don't keep a baby book for Avery, so when she does something cute it's going on her blog!
Tonight, I was about to take Avery upstairs for bed, so I told her to say, "goodnight, daddy." She has transitioned over the last year from just kissing daddy goodnight to now actually saying, "guh-nah, daddy." But tonight, she took the initiative to say goodnight to everyone and everything. We cracked up as she kissed her toy house, then crawled onto the couch and kissed the window, "goodnight, sunny!" Then onto the lamp, sissy's swing, sissy's bouncy chair, Diego and then finally her potty chair. It was not only one of the sweetest things I've seen her do, it proves how well she's doing verbally and cognitively. So love that little girl.
Tonight, I was about to take Avery upstairs for bed, so I told her to say, "goodnight, daddy." She has transitioned over the last year from just kissing daddy goodnight to now actually saying, "guh-nah, daddy." But tonight, she took the initiative to say goodnight to everyone and everything. We cracked up as she kissed her toy house, then crawled onto the couch and kissed the window, "goodnight, sunny!" Then onto the lamp, sissy's swing, sissy's bouncy chair, Diego and then finally her potty chair. It was not only one of the sweetest things I've seen her do, it proves how well she's doing verbally and cognitively. So love that little girl.
Saturday, February 8, 2014
One year
Today we are celebrating a HUGE milestone. Avery's left cornea transplant is one year old, and still clear. This is like another birthday to a transplant recipient, so we are treating it like one! Cake, candles, and pictures, of course :) While the one year mark doesn't give us immunity from future issues, it does get us over a typical hurdle in terms of her body continuing to accept the transplant. If we continue to have failed grafts, we have little options as far as saving her sight, so this is a really big milestone, and honestly, one that I didn't see coming. As I have said before, it's very hard to remain optimistic when you see failure and disappointment time and time again, but this one proved me wrong, thankfully.
“Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.”
One year ago today, we were staring down the barrel of one of the hardest years of our lives. This was attempt #6 for a cornea transplant, which in our world, isn't super promising. If that wasn't enough, her brain shunt was malfunctioning, and John and I were up every hour at night readjusting her as she slept to keep her head elevated. I was also in the midst of first-trimester sickness. I was scared, angry, frustrated, and exhausted in every sense of the word. And it didn't get any easier. New transplants bring a ton of baggage with them, and keeping up with all of it with a small child is no easy task. They are extremely vulnerable, especially for the first few months, but continue to be for a long time. They require constant care, protection, and 'round-the-clock medication. Conveniently for us, we were already up around the clock due to her shunt issues, so peeling the tape for her eye shields off every couple hours to do drops was just added to the list. Plus, at that point, we were seasoned veterans. The very first Peter's Anomaly mom that I ever met told me, "it will eventually get easier, not because they are cured or get better, but you get used to it and that makes it easier." This is so true. When I look at things I handled last year versus when Avery was a newborn, it's like night and day. Even the simplest thing like eye shields at bedtime. I used to cry over the fact that we had to tape metal shields to our baby's face - it chapped her skin, made her poor little cheeks red and pulling it off was torture - for her and us! But now, nearly four years later, Avery just lays there and says "on" and "off" when we do them, and we don't even think about it anymore. (Although learning about gentler kinds of tape definitely helped!) Practice makes perfect, and sometimes you're unfortunately practicing things that really suck, but you get better at handling them. THANK GOD. Don't get me wrong, I had many a breakdown last year, and if you were a fly on the wall at my house, you probably wouldn't think I was handling it very well, but in the grand scheme of things, I'm pretty impressed with the three of us. That surgery one year ago was the first of four major surgeries for the year. In between, there were countless other struggles. One year ago, I thought our lives were unraveling at the seams.
But today, in this moment, I feel like all the stars are aligned. Funny how life is. It will knock you down over and over, but while you're down, you remember the times like these to keep you getting back up. Avery is doing better right now than she ever has. Her health has been great since September. This one year milestone is one she has not previously achieved. If we're really lucky, we'll celebrate another (her right cornea) on March 21st, and if we're lottery-winning-lightning-striking-twice-lucky, we'll celebrate another (one year since her last shunt revision) on August 14th. Developmentally, we're ecstatic with her progress. If you keep this kid out of the hospital for longer than a few weeks, she'll impress the heck out of you! Between the span of time since her last surgery, her awesome team at school, and having a sister to make her more independent, Avery is growing by leaps and bounds. She's saying a ton of words, using her cane like a pro, and mastering all the letters, shapes and colors. I'm beyond amazed by this girl every day, and she's my number one inspiration. She's defied so many odds, and does things that we never expected her to do. And thankfully, we never take one of those things for granted. We sit back in amazement, smiling ear-to-ear, each time she says a new word, or recognizes a color, or gives her sissy a toy to keep her from crying. If you would have told me one year ago today where we'd be now, I would have been so incredibly relieved. But that is what keeps you going - the knowledge that anything is possible and whatever hellish situation you may be going through at any given time is probably temporary.
We are so proud of Avery, we need a new word for "proud." She continues to be an overcomer, and her positive light is seen by everyone around her. Happy One Year, and here's to many, many more!
“Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.”
One year ago today, we were staring down the barrel of one of the hardest years of our lives. This was attempt #6 for a cornea transplant, which in our world, isn't super promising. If that wasn't enough, her brain shunt was malfunctioning, and John and I were up every hour at night readjusting her as she slept to keep her head elevated. I was also in the midst of first-trimester sickness. I was scared, angry, frustrated, and exhausted in every sense of the word. And it didn't get any easier. New transplants bring a ton of baggage with them, and keeping up with all of it with a small child is no easy task. They are extremely vulnerable, especially for the first few months, but continue to be for a long time. They require constant care, protection, and 'round-the-clock medication. Conveniently for us, we were already up around the clock due to her shunt issues, so peeling the tape for her eye shields off every couple hours to do drops was just added to the list. Plus, at that point, we were seasoned veterans. The very first Peter's Anomaly mom that I ever met told me, "it will eventually get easier, not because they are cured or get better, but you get used to it and that makes it easier." This is so true. When I look at things I handled last year versus when Avery was a newborn, it's like night and day. Even the simplest thing like eye shields at bedtime. I used to cry over the fact that we had to tape metal shields to our baby's face - it chapped her skin, made her poor little cheeks red and pulling it off was torture - for her and us! But now, nearly four years later, Avery just lays there and says "on" and "off" when we do them, and we don't even think about it anymore. (Although learning about gentler kinds of tape definitely helped!) Practice makes perfect, and sometimes you're unfortunately practicing things that really suck, but you get better at handling them. THANK GOD. Don't get me wrong, I had many a breakdown last year, and if you were a fly on the wall at my house, you probably wouldn't think I was handling it very well, but in the grand scheme of things, I'm pretty impressed with the three of us. That surgery one year ago was the first of four major surgeries for the year. In between, there were countless other struggles. One year ago, I thought our lives were unraveling at the seams.
But today, in this moment, I feel like all the stars are aligned. Funny how life is. It will knock you down over and over, but while you're down, you remember the times like these to keep you getting back up. Avery is doing better right now than she ever has. Her health has been great since September. This one year milestone is one she has not previously achieved. If we're really lucky, we'll celebrate another (her right cornea) on March 21st, and if we're lottery-winning-lightning-striking-twice-lucky, we'll celebrate another (one year since her last shunt revision) on August 14th. Developmentally, we're ecstatic with her progress. If you keep this kid out of the hospital for longer than a few weeks, she'll impress the heck out of you! Between the span of time since her last surgery, her awesome team at school, and having a sister to make her more independent, Avery is growing by leaps and bounds. She's saying a ton of words, using her cane like a pro, and mastering all the letters, shapes and colors. I'm beyond amazed by this girl every day, and she's my number one inspiration. She's defied so many odds, and does things that we never expected her to do. And thankfully, we never take one of those things for granted. We sit back in amazement, smiling ear-to-ear, each time she says a new word, or recognizes a color, or gives her sissy a toy to keep her from crying. If you would have told me one year ago today where we'd be now, I would have been so incredibly relieved. But that is what keeps you going - the knowledge that anything is possible and whatever hellish situation you may be going through at any given time is probably temporary.
We are so proud of Avery, we need a new word for "proud." She continues to be an overcomer, and her positive light is seen by everyone around her. Happy One Year, and here's to many, many more!
(Last year, her failed grafts were very cloudy and she had a lot of trouble getting around. She put objects right up against her eyes to try to see them and she ran into a lot of walls :( And the most tell-tale sign: no red reflexes from the camera flash. Now today, her new corneas are clear, and as you can see, the reflexes are visible!)
Friday, January 10, 2014
Special Moment
I had one of those moments this morning with Avery when I just wanted to press the pause button on my life and keep things this way forever. It was a simple thing, but one of those life moments that are so special and precious that you, the parent, know how valuable it is. She's been doing really well lately on mimicking sounds and she makes an attempt at pretty much any word you ask her to say. This is huge progress from even the summer and we are so excited.
She has recently found it funny to repeat sounds or exclamations such as "oh yeah!' or a silly laugh, snort or noise. I did one of these laughs this morning and she kept repeating it, followed by giving me an eskimo kiss, which she also just learned to do. She let out big belly laughs and gave me those huge, Avery smiles each time I made the noise, and she tried her hardest to match it. Then she would play with my hair and rub my face, because she loves when I say, "mama's hair, mama's face." I'm sure many parents understand this feeling - when your child learns something new, and is so proud of it that they want to do it over and over. Plus, I got the feeling that she was so happy to play a game and get full attention from her mommy, since that isn't always the case with a new sister around. This back-and-forth exchange was so simple when you compare it to most kids, but to me, it's a big deal. It shows she sees, she is learning to mimic sounds, and she's cognitively more developed. This reaction to my funny laugh will probably come from Lucy when she's 12 months old, and Avery is approaching 4 years in April. This is why these moments are so very precious and I have a celebration inside each time they happen. Because we worked so very hard and waited so very long to get here.
I just had to include this entry so I could look back some day when things are bad, and remind myself of this special moment.
She has recently found it funny to repeat sounds or exclamations such as "oh yeah!' or a silly laugh, snort or noise. I did one of these laughs this morning and she kept repeating it, followed by giving me an eskimo kiss, which she also just learned to do. She let out big belly laughs and gave me those huge, Avery smiles each time I made the noise, and she tried her hardest to match it. Then she would play with my hair and rub my face, because she loves when I say, "mama's hair, mama's face." I'm sure many parents understand this feeling - when your child learns something new, and is so proud of it that they want to do it over and over. Plus, I got the feeling that she was so happy to play a game and get full attention from her mommy, since that isn't always the case with a new sister around. This back-and-forth exchange was so simple when you compare it to most kids, but to me, it's a big deal. It shows she sees, she is learning to mimic sounds, and she's cognitively more developed. This reaction to my funny laugh will probably come from Lucy when she's 12 months old, and Avery is approaching 4 years in April. This is why these moments are so very precious and I have a celebration inside each time they happen. Because we worked so very hard and waited so very long to get here.
I just had to include this entry so I could look back some day when things are bad, and remind myself of this special moment.
Friday, January 3, 2014
Secret Santas
As this blog serves as documentation of Avery's journey, we have to include a HUGE surprise our family got this Christmas. Our dear friend, Jen Satchell is one of the sweetest people you'll ever meet. She's always thinking of us and Avery; for every single surgery or major appointment that she had this year, I received an encouraging text message from Jen, which is truly the best thing anyone could do for us. She did not stop there, though! She let us know a few weeks ago that her team at work "adopts" families each year for Christmas, and she had not only nominated us, but we were chosen. We didn't really know what to say - we were so touched and speechless, actually. Our family and friends have done so many generous things for us since Avery was born. We always say that we don't need anything but their good thoughts, prayers, and the occasional call to let us know they are there. Regardless, we've been gifted with meals, had our lawn and snow taken care of, our dog cared for, toys and books for Avery, flowers, money toward college, medical expenses and even for our cord blood banking (just to name a few!) We are so appreciative of everyone's kindness and generosity, even though we think it's too much! Our way to return the favor is to continually look for ways to help others, including all of the dear people in our lives, if they ever are in need. We never thought we'd be in the position of caring for a child with chronic medical conditions, and even though we could handle everything without a single act of kindness, it definitely makes the hard times easier when you know you have such an amazing support system.
This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.
Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!
Love,
The Devereuxs
This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.
Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!
Love,
The Devereuxs
Friday, December 6, 2013
Appreciating the little, big things
Lucy is just over two months old. We had her two month check-up this week and the pediatrician told me she's "perfect" - doing everything she should be doing, if not more. As she checked Lucy's eyes with the light, I smiled and knew how precious it is that she can even do that part of the exam. Lucy's pupils shrank, and the doctor saw two bright, red reflexes, no problem.
At this point in Avery's life, she was barely getting over her bacterial meningitis infection, and we were being told that her new cornea transplant was failing before it even had a chance to work. We were just starting therapy to get her to learn to turn her head toward a light, or to bring her legs to an noisy object so she would be aware she could kick her legs. Avery was completely blind and as cruel as it sounds, was basically behaving like a slug. I am aware that two- month-old babies don't have a completely developed vision system, and they are not seeing very clearly. The pediatrician and eye doctors assured me of this over and over when they examined Avery. However, I'm now aware that they were just trying to make me feel better. The difference between Lucy's vision at two months and Avery's is incomparable. It is glaringly obvious that Lucy sees - she smiles at the sight of our faces, she tries to bat at the toys hanging from her gym, and she turns toward me as I walk by her. I can move a toy over her head and she tracks it. It's an amazing experience that takes my breath away every single day. John and I still think "so this is what it's supposed to be like!" It's a feeling you could only know if you only ever had a baby who did not do what they "should be doing." And I'm grateful to know this feeling because I wonder if I would just take all these milestones for granted if I never had Avery. If I never knew how it feels to have these things absent, would I appreciate so much that they are happening, so easily, every day with Lucy? I feel like I get a gift that many moms don't. It also makes me appreciate and respect people like my dear friend, Joanna, who like many other special needs moms, had her "typical" child first. She knew what her baby "should be doing" and every day had to look at her second born daughter, with Peter's Anomaly, who was clearly not doing those things. I can imagine that instead of feeling relief and joy every day, like I am, she felt scared and so sad. I can also now appreciate even more all my friends who had their special needs baby first. We were hit with moments every day of our second pregnancy when the fear of "it happening again" paralyzed us. And when the baby is born healthy, we were overcome with so much relief and happiness, words will never describe. It's just an incredible feeling that you have every time you look at your healthy child, or experience them meeting a milestone that your first child did not.
Many times I also feel guilty for being so happy about how easy and typical Lucy is. Neither we nor Lucy have to work as hard as we did with with Avery. She eats, sleeps, poops, plays. That's it. Besides her little stint in the hospital, she only has to go to the doctor for routine visits and shots. And not to minimize the experience of watching your baby get a shot, but .... it's not a big deal. If you never had to see your baby go through anything worse, then I can see how it may be traumatizing. But let me assure you, it's not. They don't even remember it 2 minutes after it happened. As Lucy was getting her three pokes this week, my exact thoughts were, "aww, she looks so cute hysterically crying!" Again, that may sound harsh, but only a mom who has seen what I've seen would understand that shots are no sweat. This second experience is a completely different one than my first, and has made me a different kind of mom. I have to learn how to juggle my two completely different children, and as they get older, learn to take both of their feelings into consideration. Lucy will feel like we favor Avery since she'll require more time and attention. And Avery may feel jealous of Lucy, who doesn't have to struggle with the same things or feel different from everyone else. Our lives will continue to be challenging, and I'm sure there are things that lie ahead that may suck more than what we've already gone through.
But in keeping with my "take it one day at a time" mantra, today I'm grateful for the gift of appreciating that in their own different ways, both my girls are looking at me, smiling, and doing what they should be doing.
At this point in Avery's life, she was barely getting over her bacterial meningitis infection, and we were being told that her new cornea transplant was failing before it even had a chance to work. We were just starting therapy to get her to learn to turn her head toward a light, or to bring her legs to an noisy object so she would be aware she could kick her legs. Avery was completely blind and as cruel as it sounds, was basically behaving like a slug. I am aware that two- month-old babies don't have a completely developed vision system, and they are not seeing very clearly. The pediatrician and eye doctors assured me of this over and over when they examined Avery. However, I'm now aware that they were just trying to make me feel better. The difference between Lucy's vision at two months and Avery's is incomparable. It is glaringly obvious that Lucy sees - she smiles at the sight of our faces, she tries to bat at the toys hanging from her gym, and she turns toward me as I walk by her. I can move a toy over her head and she tracks it. It's an amazing experience that takes my breath away every single day. John and I still think "so this is what it's supposed to be like!" It's a feeling you could only know if you only ever had a baby who did not do what they "should be doing." And I'm grateful to know this feeling because I wonder if I would just take all these milestones for granted if I never had Avery. If I never knew how it feels to have these things absent, would I appreciate so much that they are happening, so easily, every day with Lucy? I feel like I get a gift that many moms don't. It also makes me appreciate and respect people like my dear friend, Joanna, who like many other special needs moms, had her "typical" child first. She knew what her baby "should be doing" and every day had to look at her second born daughter, with Peter's Anomaly, who was clearly not doing those things. I can imagine that instead of feeling relief and joy every day, like I am, she felt scared and so sad. I can also now appreciate even more all my friends who had their special needs baby first. We were hit with moments every day of our second pregnancy when the fear of "it happening again" paralyzed us. And when the baby is born healthy, we were overcome with so much relief and happiness, words will never describe. It's just an incredible feeling that you have every time you look at your healthy child, or experience them meeting a milestone that your first child did not.
Many times I also feel guilty for being so happy about how easy and typical Lucy is. Neither we nor Lucy have to work as hard as we did with with Avery. She eats, sleeps, poops, plays. That's it. Besides her little stint in the hospital, she only has to go to the doctor for routine visits and shots. And not to minimize the experience of watching your baby get a shot, but .... it's not a big deal. If you never had to see your baby go through anything worse, then I can see how it may be traumatizing. But let me assure you, it's not. They don't even remember it 2 minutes after it happened. As Lucy was getting her three pokes this week, my exact thoughts were, "aww, she looks so cute hysterically crying!" Again, that may sound harsh, but only a mom who has seen what I've seen would understand that shots are no sweat. This second experience is a completely different one than my first, and has made me a different kind of mom. I have to learn how to juggle my two completely different children, and as they get older, learn to take both of their feelings into consideration. Lucy will feel like we favor Avery since she'll require more time and attention. And Avery may feel jealous of Lucy, who doesn't have to struggle with the same things or feel different from everyone else. Our lives will continue to be challenging, and I'm sure there are things that lie ahead that may suck more than what we've already gone through.
But in keeping with my "take it one day at a time" mantra, today I'm grateful for the gift of appreciating that in their own different ways, both my girls are looking at me, smiling, and doing what they should be doing.
Wednesday, October 23, 2013
What else?/Welcome Lucy
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.
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.
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