August 18, 2019
A couple of weeks ago we attended a Spina Bifida clinic at Phoenix Children’s Hospital. The clinic lasted 4 ½ hours and we saw a handful of Doctors from eight different specialty areas. We were eager and grateful to be there to understand how Peri is progressing and growing.
Peri was x-rayed, poked and touched… asked to jump, kick, roll over, get up from the floor, say words, walk backwards and turn around.
It’s taken me awhile to process everything we heard. We took notes at each of the visits and tried to absorb what every Doctor was saying to us.
Overall it was a cautious assessment of Peri and we have some serious things to learn in the next year.
As her parents it’s difficult to grasp that we are doing the best we can, she is doing the best she can, but there are still problems.
So I’ll break it down for you.
Peri needed an X-ray on her hips. It’s common with spina bifida children for their hips to pop out of place when they begin walking. At least 25% will have hips that become unstable. Hip instability happens because of problems with the nerves in the spine that control the muscles involved in moving the hip. Some get this corrected with surgery although the hips typically pop back out anyway.
The x-ray showed that she has shallow hips meaning this could be a detriment in the future. Her growth will indicate what happens and she will have another X-ray in 6 months. We were told to keep Peri active so she can gain more muscle in her legs. It’s possible she will need hip surgery down the road.
Physical & Occupational Therapy:
It seemed like endless back and forth on whether or not Peri needed modified AFOs. AFOs stand for ankle, foot, orthotics and these are the leg braces that help Peri walk. The reason for a possible adjustment is that she has no nerves in her calves, meaning no muscle tone. If we modify the AFOs to bend a bit more at the ankle, she has the potential to build up calf muscle. But the physical therapist consulted with the orthopedic surgeon and it was determined by Peri’s movements that she crouches slightly inward into her knees, which will need to be corrected before she can have AFOs that are more flexible.
We were provided a list of verbal instructions from PT and OT, to which Eric and I were furiously jotting down notes:
When she climbs, make sure her knees are aligned.
Have her partake in activities that will build her quad muscles.
Massage her toes each night.
Put lotion on the inside of her toes so there is no skin breakdown.
She does not have feeling in her left foot.
Massage the fetal surgery scar on her back. The tissue around it is too tight.
Correct her sitting position. She likes to sit on her knees with her legs in a “W” formation. She needs to sit with her feet in front of her.
Start potty training.
And last, it was strongly encouraged that we amp up her physical therapy and speech to weekly.
90% of Spina bifida patients need catheters. This statistic has been branded into my brain. Most kids do not have feeling in that area so they can’t tell when they have to use the restroom. We explained to the urologists that Peri sometimes points at her diaper when she has to go “number two”. The team of Doctors encouraged us to start potty training – now.
It was also mentioned that if Peri doesn’t take to toilet training, we’ll know she needs a catheter. This is when the 90% stat was repeated. In the moment, I nodded and smiled as I was still processing. But now I disagree. She’s 2. Actually, she’s barely 2 gestationally because she was born nine weeks early. If she doesn’t pick up on potty training it’s not because she needs a catheter, it’s because she’s not ready.
The nephrology surgeon was there to make sure urine was not backing up into Peri’s kidneys. Based on Peri’s health on paper, he was confident she didn’t have any issues, but to be safe, he ordered a lab for her to give blood when we finished the clinic.
When we went to give blood at the end of the clinic Peri was exhausted and hungry. I held her down as two nurses poked her with a needle twice to find her veins. I almost cried. I almost quit. I almost screamed “Stop doing this to my daughter.” But she was tough and I was tough. We received the results a week later and her kidneys are functioning perfectly.
We also met with a nutritionist, a psychologist and neurology.
The nutritionist was happy with Peri’s eating habits and the kind of food we give her. Spina Bifida kids (especially girls) are susceptible to a thing called precocious puberty. This means that they can experience early hormonal growth or puberty between the ages of six and eight. It can cause problems in their bones and stunt their growth. The Doctor assured me not to worry about this. We will continue consultations with a nutritionist yearly to ensure Peri’s health stays on track.
The visit with the psychologist was informative. She reminded us that Peri is eligible for special developmental education when she starts Pre-school. They psychologist also recommended that Peri’s speech therapy and physical therapy be increased in frequency. In a very kind way she told us it was time to start advocating for our daughter.
Interestingly enough, the neurology visit was the easiest. With just a quick look at Peri’s head and movements, the neurosurgeon was very pleased. She will go in for another sedated MRI to check her spine growth and brain ventricles next year.
Again, while we were grateful for this clinic and the ability to learn more about our daughter, it was a lot to comprehend.
What I heard is that she is doing very well, but she could be doing better.
What I felt was another slap in the face and a voice inside saying – your life isn’t normal…your child has spina bifida.
I try to spin the negative thoughts into positives. I try to remember the physical therapist who said that Peri made her day because she never sees spina bifida kids doing so remarkable.
We have a lot to face in the future. We have years of days just like this ahead of us. The only thing we can do is take these Doctors’ recommendations, listen to what our hearts are telling us, and raise Peri in the best way we see fit. It doesn’t mean I won’t worry. It doesn’t’ mean I’ll sleep well. But I know in my heart we won’t fail at this and neither will she. Eric and I, Brittain and Delaney, will continue to push and cheer our little girl through life, and through the milestones we know she can achieve.
The rest is up to God.
May 3, 2019
Today is called Peri’s “Butt Day.”
On this day two years ago, she and I had our fetal surgery at UCSF. When I think of the memory now, the only words that come to my mind are “life changing.” The morning of May 3, 2017, we did something that forever changed our lives and our baby’s life.
A couple more words that come to mind – gratitude, hope, and innocence. I look back at our 36 year-old selves and think about how it was the beginning of a world unknown to us.
In watching Peri grow, we’re seeing her now for who she is and who she can be someday. She is not held back by any diagnosis.
She took her first steps in March - a day, a moment, I will forever remember. So many times we were told she may not have full mobility. Now she is almost running, and has a sassy trot in her step. She works hard to move fast, screaming and chasing after her sisters. Most times, this ends with a hard wipe-out on the floor, but with encouragement, she pops her round baby body back up and starts again.
While she is a daily inspiration in our household, spina bifida does not make her sweet. Like any other toddler at this age, she’s started to express her independence.
Peri loves to say “NO-NO!” – with big round lips, flushed cheeks and wild eyes.
And she’s learning to stick up for herself – swatting at her big sisters and screaming “MINE!”
With the little discipline you can try to give a 22 month old (because yes, we do try) comes a smile on her face, or a big giggle from her belly – indicating to us, that it’s the most hilarious thing she’s seen all day. In other words – Nice try mom and dad.
This year we’ve shared many shining moments. Looking ahead, we’ll tackle more neurology and orthopedic appointments. We’ll consult with speech to help Peri communicate and combine words. We’ll continue therapy so she can tackle stairs and find more confidence in her movements.
We’ve had tough seasons with all of this.
It puts our silly worries in perspective.
We’ve found positivity and determination.
And on the hard days, just like Peri does, we get back up and start again.
So today we celebrate. As we say in the Spina bifida world, “Happy Butt-Day, Peri!”
January 1, 2019
I’m going to disclose something that’s hard to admit…I’ve been wallowing. Whining and complaining about my life with these thoughts that run through my head
I didn’t sign up for spina bifida
I feel like I have 4 kids with all of Peri’s needs
I don’t have time. I don’t have time. I don’t have time.
I’ve avoided writing a new post out of the judgment I fear. Yes, it’s been 2 months of sick kids…every single week…someone is sick. And the added doctor’s appointments.
And the constant pressure – the high expectations as a mother, a wife, a leader at work. Daily I feel pressured to log eight-plus hours of work and pretend I don’t have children.
I go running to destress, and I tell myself over and over in my head - just be grateful. And then I look at other moms - HOW do they have all their shit together?
I had an 18 month check-up for Peri 2 weeks ago. In the midst of massive work stress and holiday deadlines, I sat in a tiny room waiting on her pediatrician for 50 minutes. Fifty minutes trying to entertain and wrestle an 18 month old who just wants to get on the dirty floor and crawl around. It felt like prison and all I could think about was the amount of work I should have been getting done.
Finally Dr. G came in…she asked the usual questions about 18 month milestones. How many words can she say, is she standing, etc. She kindly said Peri is on the very low side of normal due to her delay in talking. She strongly encouraged me to get her into Speech Therapy ASAP.
In addition, at this same checkup, Dr. G diagnosed Peri with a double ear infection (her fifth ear infection of the year). Meaning we’ll have to make an appointment with an ENT as she’ll likely need tubes.
During all of this dialogue with my pediatrician (who I consider a friend) Peri was flailing and screaming, so much so, that we were unable to get her 18 month vaccines (which is what I was there for). I had to make a new appointment to come back. I left a flustered mess. Still mad I had to wait so long, frustrated that she has another ear infection, and even more overwhelmed that I have at least three more appointments to place on our calendars for January.
Heading into the New Year I know we have challenges to face. Eric and I sat down a couple of days ago to map out exactly how we will handle the chaos of our lives this upcoming year. How can we be the best at our jobs and the best to our kids? How can we get ahead so we’re not playing catch-up every day? We came up with a plan together. A plan that does not involve complaining, or letting uncontrollable situations get the best of us. A plan to stay positive, to accept we’re not always going to be the best and to keep learning about ourselves.
So I am done wallowing. Looking back on this year we accomplished a lot as a family. Peri has had so many victories, and so have Brittain and Delaney. Each one of my girls have shown me courage this past year.
It’s a New Year and I have new hope… for me, my family, us. We can do this. We ARE doing this!
October 25, 2018
October is Spina Bifida Awareness month. I keep asking myself – what does this really mean? How can I make people understand? What Eric and I know about spina bifida mostly revolves around Peri’s condition.
I touched on this last year during awareness month… I do wish people knew what it was. I wish I didn’t see the confused looks when I say to those who ask, “Oh, she has spina bifida.” And then I hesitate, wondering if I should go on to explain the basics – that she is affected from her waist down and she’ll need assistance walking, that it’s possible she’ll have a catheter one day to use the restroom, and she could have fluid in her brain. Instead I usually say, “but she’s doing really great.” And then I hope they look it up later.
So I will make an attempt to educate you on some facts about Spina Bifida:
4 – 5 babies are born each day in the U.S. with spina bifida
Over two-thirds of babies diagnosed with spina bifida are aborted
Because of pressures on the spine and brain, many spina bifida patients are also diagnosed with hydrocephalus, which is the buildup of fluid in the brain. 80% of spina bifida patients have a brain shunt to help drain this fluid.
Other major complications of spina bifida:
Severe bowel and bladder issues
Chiari malformation – meaning the pressure on the brain causes the brainstem to extend to the spine
It’s a lot, I know. And it sounds really scary. But Peri shows us strength, each day that we didn’t know she had.
In September we met with her neurologist after her MRI to discuss her head size and fluids in the brain. And thank you all for the thoughts and prayers, because we came out with exceptional results. The Doctor had no concern over her ventricles. Where she does have a small amount of fluid, it’s nothing out of the norm. It was music to our ears when he said, “Don’t come back for another year.”
Forging ahead, we focus on therapy and keeping her healthy. Since starting daycare two months ago, her immune system is getting hit hard. She’s made great strides in physical therapy and her weekly swim lessons have helped her advance. She started swim class earlier this month and I can’t even put into words how different she is. Her confidence shines, she laughs, points and yells at the other kids. She waves furiously to everyone around, and walks against the ledge of the pool.
She’s made huge improvement in her ability to move her legs. She is taking steps alongside the couch or with us holding her hands. She’s working on standing on her own with her back against a wall. And we’ll see if she eventually has a walker or sticks to support her. While her stride may not be pretty, she will walk – and maybe soon!
At 16 months, Peri’s speech is delayed. She uses signs and often tries to articulate by yelling. It’s been heartbreaking to watch because I never watched my other two struggle with this. I can see how badly she wants to communicate, especially to get her sisters’ attention. We encourage her to use her words via sign language but that only goes so far. I know it will come in time, but I still worry.
Awareness month takes me back to Peri’s diagnosis. I sat in a small office with the perinatal Doctor when he gave me the news. I remember wishing he would stop talking so I could google the terms. I hid my phone in my lap and started typing “spina bifida”. And now I think of all the other mothers who have to sit in that chair. I wish I could sit next to them, hold their hand and tell them – it’s going to be okay. We need advocates to support each other.
I think many of us in the spina bifida community would like others to understand it’s not all bad. It’s not about what’s wrong with our children, it’s about their achievements. We were blessed with the gift of fetal surgery for our baby. Peri has struggles, but her shining moments far outweigh the challenges. So I’ll leave you with the wise words from Dr. Seuss, “Why fit in, when you were born to stand out?”
August 15, 2018
Here we are, already in August – I can’t believe it. It’s been so long since I’ve posted an update but our summer was jam packed. Plus, selfishly I’ve enjoyed holding on to some of our family moments. Some of those in which Peri has basically said “spina bifida—who?”
She is now approaching 14 months. Her personality is what you’d imagine by seeing her photos. She’s beyond happy, but recently has learned how to “fake cry” from her sisters. I’m not even kidding – she scrunches up her face and nose, moves her mouth to the side and gives a scream. I think her favorite people in this world are her sisters – Brittain and Delaney.
Her progress is truly beyond measure at this point. We had a summer free of Doctor’s appointments and full of physical therapy. From that, we were able to focus on her crawling and standing. We thought she’d crawl on her first birthday but it was about three to four weeks after when she took off on her hands and knees. I missed it. I was in the office that day…when she decided to crawl for our therapist and Eric. I had tears of happiness and sadness that I hadn’t been part of a big moment, but she did it again for me when I got home. And she is all over the place now. Which means she’s getting painful blisters under her AFOs. (Can she feel them? We’re not sure.) We recently visited our favorite orthotic specialist, Kurt who works at the clinic, and he fixed her right up. Adjusted her AFOs so they won’t dig when she moves.
Not only is the crawling a success, but she is working so hard to stand. It’s an overwhelming feeling when I see her stand, supporting herself with one hand on the couch. I think my heart skips a beat. Why? Because before she was even born we were told that spina bifida kids may not walk and if they do, it’s not before they are three years old. But a couple of our medical professionals have mentioned that she could walk by 18 months or just after. I always respond and say, “I don’t know…we were told she won’t walk until she’s three.” They’re response -- “Look at her – she’s going to surprise you.” And THAT, she already does each day.
We met with her ortho surgeon just last week at Phoenix Children’s Hospital. He did a close assessment of her feet and said she has clawed feet and toes, which is to be expected. Overall he was extremely pleased with how she was looking, moving and flexing her ankles. (And this man is NOT easy to please- bad bedside manner and all, Peri actually got a smile and wave out of him.) Checking out of the children’s hospital, Eric and I started talking about how much time we’d spent there a year ago. And I think we both had a little extra bounce in our step as we left – feeling like our daughter is pretty bad ass.
So, next up is tackling the social scene, as we’ve just placed Peri in daycare. Yes, it’s extremely difficult to leave her, but I’m a big proponent of social interaction. Yes, I fear being judged for it, but am confident in my decision – I know in my gut this is good for her. And yes, I rush to pick her up as soon as I can at the end of the day.
Lastly, coming up in September, she has a big neurology test to look for fluids in her brain. She’ll have an MRI at the Children’s Hospital. I am scared. It’s something that sits in the back of my mind. I feel like I’m constantly evaluating her head to see if I think it’s grown. We’ve been measuring her on our own, but it’s hard to tell. If fluids are in the brain we’re looking at the idea of a shunt (a permanent neural tube inserted into her brain that will release the fluids in her ventricles.) If this becomes reality, we’ll overcome it but I can’t –I can’t even finish typing this sentence—because I really just don’t want that to happen for Peri. We’ll take prayers, love, good vibes and any happy thoughts you can send our way.
I get a lot of people who check in…not just on Peri, but on me and Eric. And speaking for myself, things are really great. I’m not sugar coating anything – of course some days are challenging and this isn’t what we thought our life would look like, but it’s amazing the perspective it gives. We have three very happy girls. The unknowns still linger. I have no idea what to expect going into her appointments. I have not an inkling of a clue about what this will look like in six months or a year. But in this moment it doesn’t matter.
So thank you all for following along with us and letting Peri and my family into your hearts and lives. I had a stranger at yoga class ask me the other day how my daughter was doing. I had to stop for a second and think – which daughter? Because this is just our life now. And the words “spina bifida” don’t rotate through my brain every second like they used to. I finally feel like “us” again.
June 22, 2018
In lieu of a blog post, I've made a video for our sweet Peri Paige. I can't believe how far she's come. How far we've all come. I think of where we were a year ago...our dark times in the NICU and how scared we all were. Yet I look at her face each morning and am speechless at her beauty, her strength, her happiness. #peripaige #spinabifida #fetalsurgery #sheisstrong
May 10, 2018
Today marks the one year anniversary that Peri and I had our fetal surgery. I woke up this morning considering it a celebratory day. We’ve come a long way from a hospital room in San Francisco a year ago.
Also on this one year mark of fetal surgery, Peri had a neurology appointment to check her ventricles in the brain and measure her head. I remember when I made the appointment, I thought – perfect, it’ll be the one year anniversary of her surgery. Surely that’s monumental – a special day where we’ll likely hear good news.
At the appointment our neurologist began by running some tests on Peri’s legs, playing with her feet and then he measured her head with a tape measure. After looking at his computer screen for what seemed like an hour, the room became a bit more tense and very quiet. He finally said that her head is measuring larger than he’d like it to be. He showed us the growth chart from November when Peri was in the green or safe area. This time she was off the chart. So she does in fact have some fluids in her brain. Where he’s not overly-concerned, we were instructed to keep an eye on her and come back in September for an MRI to take a more in-depth look at the size of her ventricles.
I asked how common it was for children with spina bifida to have a shunt inserted over the age of one year. He replied that it’s not common but it does happen. He gave us an analogy, “If a sink faucet dripped water into the sink basin that drains only 99.9% of its contents, eventually it will overflow.” He said this could certainly self-correct since she’s a growing baby. If not, we will consider next steps for a shunt.
Eric and I both left the appointment feeling deflated. Neither of us expected to hear that. We’ve had such optimistic appointments these past six months. It’s like we were slapped in the face with a reminder, “Your child has spina bifida!”
I’m grateful for the fact that there are solutions for her, that there is a medical device like a shunt that can save her life. I think it’s a wonderful thing. But at the same time I can’t help feeling like I have failed her. This was what fetal surgery was supposed to help us avoid. Not only was it a reminder that Peri has special needs, it was a reminder that we are still living in a world with unknowns. We have no idea what’s next, nor do we have any control over it. Which is frustrating for any parent…we want to control the health of our kids.
I am still reeling from this appointment, even days later. It’s another weight on our shoulders as we go through our daily routines. Another worry at the end of each day. But Eric is thinking positive, so I’ve shifted my focus from the negativity to the things we can help Peri with – her therapies, her growth and her happiness. He and I have decided to assess her head with a tape measure once a month to put our minds at ease. Shunt or no shunt, that girl will never lose her smile. And we have goals. With therapy our goal is to get her crawling by the time she’s one (which is almost a month away!)
So another day in the life of spina bifida. We’ll continue to take any prayers, positive vibes and happy thoughts as long as you can give them.
And while I’m not feeling particularly inspiring, I’ll leave you with words that come to mind when I think of Peri – happy, strong, brave, round, giggly and normal. Because where it might not feel like we’re living a normal life, she is the most normal baby to us. And our lives are better because of her.
March 16. 2018
A Dad's Perspective:
Kate has asked me to step in and add an additional outlook from the "Father" angle of our journey, so here I am! I've never written a blog post before so I appreciate your time in reading this.
It is genuinely my hope that someday, at some point, a father-to-be, a dad with a child that has Mylomeningocele, may read this.
Kate and I are rapidly approaching the one year mark when we received the news that our third child was having development issues in the womb. There is a split screen to life when you know in your gut, no matter what happens, the future will be changed. Fast forward to life today and I can say things are a bit different than what I anticipated.
Peri is 9 months (7 months gestational) and my answer to all this hubbub is, "it's a true highlight!" Peri – as anyone who has met her knows – is the most smiley, pretty little thing….you can't resist holding her. She's a sweetheart to the fullest, tolerant of her wacky sisters and easy-going on doctor visits and tests. This little girl will teach you how to be patient and happy through anything, without speaking a word.
Beyond that, Peri continues to make awesome strides in her development. There is no doubt in my mind that the amazing team of doctors and specialists at UCSF set Peri on the right trajectory after her and Kate underwent fetal surgery. Of course, all the thoughts and prayers carried her far and will continue to do so. At this moment, Peri has not needed a shunt and has passed her urology testing with flying colors. She's in the twilight of having her boots and bar, due to being born with clubbed feet, and specialists seem encouraged with the overall movement of her legs. They say we will have her walking someday. If one year ago I read what I just wrote, I'd be so grateful, and I truly am. I take the overall good news with a grain of salt, considering she is still very young and there are certainly unknowns and challenges that lie ahead. This is where my worries come from. Any minute this could all change, but for now the moment is good and being Peri's dad is great.
There's more though. I have two other daughters, a wife, a small business, a full-time job (Kate does as well) and I volunteer my time for our HOA community and my college fraternity alumni board. My phone rings and dings enough to make me want to throw the damn thing in a toilet daily. If I can get 30 minutes with a frosty beer in my hand watching some sports or a show I want to watch... not the "hey honey this is the House Hunters you like" …that's my happy place.
There's also our new found love of hospital and medical bills, copays, equipment for Peri, etc. From now on I should raise a toast at New Year's parties and challenge anyone to a drag race, to see who meets their insurance deductible first! Anyone with a child who has special needs knows about this fun race we’re becoming accustomed to. There are many wonderful resources that can assist, which Kate has researched. Just an added stressor we have to consider…we don’t just have three kids, we have three kids and one who needs extra time, extra help and extra financial consideration.
Is it all pretty? Nope. The stress level is often at a 10. Is it all worth it? Yup. Now, more than ever before in my life, I've learned to cherish the small wonderful things that occur. Our three and five-year old daughters just started T-Ball. As Delaney’s full time manager, I told the coach during a game that I may have to send her back down to the minors for not listening to him. Not ten minutes later, frustrated as I could ever be with her, here she comes rounding 3rd base to home in a little trot, and the biggest smile on her face that made my day. It was truly a moment where I took a step back and realized Del just wants to be a three year old, and no one can take that away from her. Britt is a good little athlete, loves her music and to sing and dance no matter what the time and venue. She does occasionally test us with behavioral notes from her teachers…but that’s another story.
The bottom line is I'm still learning. There's a book written by Meg Meeker "Strong Fathers, Strong Daughters." I read a majority of this book prior to having Brittain. I knocked the dust off of it the other day to refresh my memory, and it was like I'd never read the book before! I learned new things. My family and kids are my rock and considering Peri's condition with Spina Bifida I wouldn't have it any other way. In the short months she's been with us so far, I know I see life through a different lens. The good man upstairs has put her here with our family for a reason and it's all a tremendous blessing.
Spina Bifida is nicknamed the "snowflake" disorder because its impact on people is never one in the same. I think about that when I meet other families or individuals that have Spina Bifida. Some in wheelchairs full time, others braced in some fashion on their legs. Some walk all the time, sometimes or never. Some who may be affected cognitively, others not. I can say that I've never NOT been greeted by a child, teenager or adult without a wonderful genuine smile – which in my mind, is the one common theme and true quality of people with Spina Bifida.
I've been lucky to have my wife through all of this. She's stronger and far more capable to handle our kids than I'll ever be. I may, however, be useful to talk with any Dad's or Father's out there who have questions about Spina Bifida and perhaps can lead you to great resources to help educate yourself. Please do not hesitate to contact me. Thanks for your time and thanks Kate for letting me be the guest writer on your blog.
January 31, 2018
It’s been a long time since I’ve had a day like this. But I am having a day. Or a moment. It’s one of those where I just don’t feel like myself. Going through the motions trying to give my best to all of those who need it. Insert whiney mom-rant…
The constant pressures at work… I love my job and if I’m going to be away from my kids to invest in my career, I’d like to give 110% and make an impact. Otherwise what’s the point? But lately it feels like I’m failing to achieve team goals.
Working with Peri to accomplish milestones, which she’s missing. Daily or hourly physical therapy that I can’t seem to find the time for. Worrying about if she’ll need a catheter. Wondering when she’ll walk and what will that look like – will she struggle? Will she limp?
Sitting down for an activity with my three year old, who I can NOT seem to get off of me, or my leg. Literally I walk around the house with her attached to my leg. I need more patience.
Finding time to play t-ball with Brittain, or teach her how to catch the ball with her glove on. Volunteering in her classroom and field trips.
Giving Eric my undivided attention to listen to his latest business idea or challenge…but getting interrupted 20 times by the girls, or only half listening because – let’s face it – I’m trying to shove food into at least one of my three kids’ mouths.
Volunteering, looking toward Peri’s future, researching life with spina bifida… but I guess this is a life with spina bifida.
Don’t we all need more hours in the day. It’s the basic good, bad and ugly and a dose of our reality. Every single mom I know has probably felt this way at one time or another.
But my biggest stressor, of course, is Peri and her milestones. She’s five months gestational, but seven months really…so comparing her to other babies her age isn’t apples to apples. But I WANT her to roll over, I WANT her to pull things to her mouth, to not get tired at tummy time and to sit up on her own. I realize I can’t pressure her – she’ll do these things in her own time, but reality is, it’s going to get worse before it gets better. She’ll continue to miss milestones as she gets closer to being one. The therapist told me today she’ll probably be crawling around her first birthday. She said it like it was normal – but I was alarmed.
We met with her ortho surgeon a couple of weeks ago. He is pleased with how her feet look. Said she needs to continue in her ponsetti boots and bar for another two months. Then she will switch to AFOs (ankle, foot, orthotic) braces. He said she will wear these for the rest of her life in order to walk. He doesn’t know her like I do though. I think she’ll shed them and walk on her own. She can bend her knees but doesn’t rotate her ankles like she should. Therapy will get her there. I think.
So we look ahead at what’s to come. An appointment with her Urologist in February to run another test on her bladder. Will she or won’t she have to have a catheter? 90% of his patients with Spina Bifida have a catheter. On top of that, physical therapy every other week, regular Doctor visits and check ins, plus an appointment with her neurologist to examine her ventricles again.
It’s so much easier to be sucked into negative thoughts than to think optimistically. I find myself wishing for a perfect world. Perfection would be escaping with my family to an island, taking Peri’s boots off and letting her feel the sand and water in her toes. Perfection would be me fitting into my skinny jeans, or Delaney dropping the word “no” from her vocabulary. Perfection would be my ability to give 110% at every single thing I am doing…
But I look at four faces I love, four people who hug and kiss me everyday…who need me, but don’t judge my shortfalls… and that’s what perfection is.
So I’m having a down day, and I’ll let myself wallow for a little while. It’s not all cherries, sprinkles and rainbows over here but at least the sun is shining.
December 21, 2017
As I reflect back on this year, I remember so many moments and then so much of it’s a blur. I remember events – pregnancy/gender reveal, Spina Bifida diagnosis, consultations at UCSF, fetal surgery, pain, living in San Francisco, having our baby nine weeks early, spending her first seven weeks of life in the hospital. I continually think – I can’t believe we went through this. And we made it.
I’ve never been one of those people who says, “I can’t wait for this year to be over.” But lately I’ve caught myself saying that a lot.
Where we received the biggest blessing of our lives, I’ve been looking for nostalgia from these past 11 months. I typically go through this as each year comes to an end. Thinking of how much fun we’ve had on family vacations, and what a great summer we had at the pool. But this year I think of Peri when she was a newborn. Searching for that feeling of reminiscence…but my memories are of a dark hospital room. Of Peri hooked up to what seemed like dozens of tubes and machines. Of me spending the night with her and never feeling like a good mother as I was missing Brittain and Del at home. Each night, after I put my kids to bed, driving back to the NICU, feeling like I was clocking in to a job. It’s hard not to see the darker times we’ve gone through. But I also see and remember the support. What people have done for us. That’s the joy that brings me to tears. How our loved ones have come together to help us through this.
So, now my thoughts switch from – “I can’t believe we went through this”, to – “I can’t believe our loved ones went through this.” How must Peri’s life and her diagnosis have affected everyone? The brutal phone calls we made to our parents, siblings and best friends. Saying it out loud made it real. And each of them, just listening on the other end of the line, silent, speechless, crying and not knowing what to say to make us feel better. I can’t believe they had to go through this with us. What they’ve all endured and the care they’ve given our family this year. The things they’ve given up to be with us, to help us, to give us light.
Eric’s Mom staying with our kids for a month, putting her entire life on hold, during the same time her sister was sick and dying of cancer.
Eric’s Dad flying to San Francisco to sit with him while I was in surgery. And his parents flying back with our kids less than two weeks later so I could see them for Mother’s Day.
My parents packing their bags, ready to drop everything when I said I needed them. Coming to help while I was on bedrest and after Peri was born. Taking the girls for multiple nights of sleepovers.
My mom asking everyone she knew for prayers…even people she didn’t know. Telling randoms we’d never met all about what we were going through.
My best friend’s husband who works for a construction company going to his boss…telling him our story…asking if his company could help build the new business Eric was working so hard to open. Saying , “Eric needs to spend time with his family. Can we take on his new store pro-bono.” And the owner agreeing, emailing Eric to say “I’m pretty sure Cody would have gone out and built your new store at night, by himself, if it was the only solution available.”
My brother and his wife, ready to put their own kids, work and life on hold, asking to come to San Francisco to be with us. To come to Arizona to be with our kids and to help us get ready for the baby while I was on bed rest. Sending packages and calling constantly for check-ins.
Eric’s sister and brother-in-law offering all of their flight points for us to use in order to travel to and from San Francisco for consultations and surgery. And having conference calls with us in San Francisco when we were feeling lonely.
Another best friend of mine starting a prayer chain with her mom and church group in Omaha. And the church ladies who sent a hand-made blanket with a prayer card for our baby.
My extremely smart childhood friend who educated herself on Spina Bifida as soon as she heard the news. Asking questions a Doctor would ask, understanding the magnitude of the situation even though she doesn't have children. Sending me a huge package of all of my childhood favorite things.
Both Eric's boss and mine, who with very little notice allowed us to be away even though it impacted business. Not to mention Eric's employees who came together to cover for him. And my Director and coworkers who joined forces to make sure there was still a road to success when I returned.
Our neighborhood families asking to send food, babysit our kids, clean our house, do anything they could to help. And organizing a Meal Train for us while Peri was in the hospital….each night I came home knowing I already had dinner there from our remarkable friends who took the time to make their best dish for my family.
Two of my closest friends who left white tulips on my doorstep the day after I told them the news, which I later found out signifies a change in your life path. And who also organized a surprise baby shower for me and Peri.
And of course my best friend Lauren, Peri’s God Mother, (Aunt Lo to my kids), who has been at me and Eric's side from the beginning. Who gave me a Sip and See to celebrate Peri. Who went to the hospital to check on Peri when I had to go to Eric’s Aunts funeral. Who I have dubbed my sister (and our husbands make fun of us for it). Who dropped everything to take Brittain and Del in on multiple occasions…and she has three kids of her own.
So while this list goes on and on, I dedicate this post and this past year to all you. All of you who stopped what you were doing, put your own lives on hold and did anything you could to comfort us.
And I empathize and think about how each of you must have felt… how our news disrupted your lives, and now, how your life has changed because you have a special needs granddaughter, niece or friend with a special needs daughter.
So while there have been many highs and lows of this year my reflection consist mostly of Joy. Joy to have my new daughter and watch her thrive. When I think back on this year I see Peri and I see all of you and I smile. With tears in my eyes, only because I didn’t know love like this existed until you showed me.
Cheers to you and to a blessed 2018. Bring it on.
NOVEMBER 21, 2017
A bit overdue this month and staring at a blank screen, reflecting on the past 5 weeks.
Peri was taken out of her casts in late October. We visited her ortho Doctor where the nurse and I unwrapped her last round of casts. She had some rough looking folds on her ankles and her toes were a bit distorted but it was so great that she was free of the heavy gauze. She was kicking and smiling like any baby does.
From there, we were instructed to drive straight to a clinic where she would be promoted to her brand new Ponsetti Boots. I was hoping for pink but we ended up with gray. A therapist named Kurt came in to fit her and demonstrate how to place the boots on her feet. He said if she had any red spots on toes, heels or ankles to call immediately for another fitting.
It took her about 48 hours to get used to these. Thankfully her feet were not showing any sign of redness or sores. We remove the boots an hour a day for baths and physical therapy. In the beginning she screamed as we held down each foot and struggled to buckle the boots without hurting her. But she took to them very well after that.
Holding her can be difficult or awkward at times. Physical therapy has ramped up, focusing on her hip movement, stretches and head control. Tummy time is a must. And our therapist is positive she has sensation in her feet, but we're not sure about her toes yet.
In public, we get quite a few stares from people as usual, but mostly people cooing over her dark hair and smiles. My three and five year old's friends are the best. “What’s wrong with her feet?” “Oh no, that poor baby broke her legs!” and “Is she hurt?” I adore their innocence and concern for Peri. Eric and I explain that she was born with her feet pointed inward so the braces are to help straighten out her feet so she can learn to walk. And that they most definitely do not hurt her – plus, she looks like a cool snowboarder!
We also had a follow up with a new neurosurgeon where they measured her head three times. They examined her feet, the top of her head, her legs and the scar on her back. It was the most in-depth neuro visit we’ve ever had. The Doctor laid her on her tummy and took a safety pin, poking at her bottom to test for sensation. It was hard to watch, but didn’t hurt her. He did the same with her heels, feet and toes. She was so fidgety it was inconclusive on whether or not she had feeling. Then the Doctor pulled up the results of Peri’s MRI from back in September. He mentioned that her ventricles were small. The fontanelle on top of her head is normal, not bulging, indicating no need for a shunt at this time.
In the imaging, he showed us the bottom of her head. Prior to our fetal surgery she had chiari (where her brain was being pulled down). What he pointed out to us now was a large gap between her brain and neck. He said, “That surgery completely reversed her chiari malformation. It’s no longer there.” He, himself was amazed at the effect the surgery had on our daughter. In that brief moment I had a huge wave of emotion where I wanted to laugh and cry at the same time. It’s uplifting to hear a medical professional tell you that you’ve done the right thing for your daughter. That the hell we’ve been through this past year was absolutely worth it. We still have a massive amount of therapy to tackle with her, and challenges are still ahead. He said she doesn’t move her ankles but that most spina bifida kids don’t. He assured us that even without ankle movement she can still be mobile. As he left the room we overheard him telling his colleague how amazing Peri looked and he couldn’t believe how well she was doing.
So all in all, our family is thriving. We’re exhausted and running at a speed we didn’t know existed, but isn’t every family with three kids? I often look for messages from God. So I listen intently in church even though my kids are AWFUL in mass – taking off their shoes, giggling, climbing on top of me, whisper-yelling “Mommy can I have a mint?” or “Mommy can I go to the water fountain!” And sometimes, “Is it time to go home mommy?” But a couple of weeks ago they colored silently in the pew while I got to listen to the sermon which said, “God knows exactly what you are capable of doing and what you are not.”
We’ve all heard a version of that. And they’re words to live by. A refreshing reminder that Eric and I are not alone in this. That even though I do long for our old life at times, Peri has opened our eyes to a very bright, remarkable light we could never see before.
OCTOBER 13, 2017
I’m not sure how to describe this past month. As a family we feel so happy – there’s so much love in this house. But we have scary, sad, “did that really just happen” moments. Lately it seems like there’s no time to take a breath or sit down. Unless, of course I’m sitting in a Doctor’s office.
Peri has grown so much. She no longer looks like a premature baby - she has chunky thighs under her casts and chubby cheeks!
She had orthotic surgery on her feet a couple of weeks ago. This is called a tenotomy where they cut her heels to release and lengthen her tendons. She and I checked into the hospital on a Monday morning at 5:30 a.m. They placed us in a small room where a nurse and I removed her casts and I wiped her down with soapy cloths. I dressed her in a hospital gown and was given little socks to put on her feet. The anesthesiologist came in to debrief us on what would happen as she went under. After about an hour, the surgeon came in to draw on her legs with a sharpie. He’s a quiet man with terrible bedside manner but I put up with it because he’s the best. Eric arrived after dropping the girls at school and got there just in time for the nurse to take Peri to surgery. We were told it would be about an hour and a half procedure, and after, she’d be held in a recovery room while the sedation wore off.
We grabbed some coffee and felt a bit relieved that we were getting this over with – mostly I just felt weird that I was child-free. Soon after, we were taken to a small office where the surgeon came back and said all went fine. He told us to place a rolled up blanket under her feet for support when she was lying flat on her back. He said Tylenol for pain was fine and we were sent back to see her. She was quiet as we approached. We immediately fed her and she started to come to. We hung out in the recovery room (listening to a little boy scream bloody murder one curtain over – I have never heard a child scream like that. I found out he was getting his tonsils out). After an hour we were sent home. We gave Peri extra love that day, a little bit of Tylenol and she proved again how tolerable and strong she is.
The next day she had an MRI back at the children’s hospital. I was assured by our neurosurgeon and the Nurse Practitioner that Peri would not have to be sedated for this. Our neurosurgeon specializes in what’s called a “Quick-bang MRI” which she often does for babies so they can avoid an anesthetic. Eric took her to this appointment. To help her hold still during the procedure, Eric climbed into the MRI cone with Peri. The Radiology staff was pleased with the images and captured her brain and spine.
They got home at 11 a.m. that morning. At 11:30 I got a phone call from the hospital. The Radiology Doctor needed to talk to us. He was put on the phone and said to me, “We found something of concern on your daughter’s brain. You need to bring her back to the hospital.” I said, “Right now?” He said “Yes, right now.” I went into full panic mode. I couldn’t breathe; my heart was beating out of my chest. I yelled for Eric and said we have to go! The drive there was brutal. Eric was calm, trying to get me to take deep breaths, but I have never seen him look so worried in my life. We arrived back at the hospital and they knew who we were immediately – they ushered us back to a small room with a curtain. We sat for about two minutes and I was holding Peri tight. I prepared myself to hear that we were going to lose her. I kept thinking brain tumor? Brain Surgery? You don’t mess around when it comes to the brain. This is so serious.
Then I saw three pairs of black shoes approach us under the curtain. THREE Doctors came in to talk to us with a nurse. One of them spoke, an old man who looked like Santa. He said, “We think we found blood on your daughter’s brain from the results of the MRI photos. It could be an artifact (or error) but we’re just not sure. We’d like to sedate her and run the entire scan again to be positive.” I said, “What would that mean if she has blood on her brain?” Dr. Santa couldn’t give me a straight answer as it could mean several things. He went on saying he believed it to be an error due to movement during the scan. I asked, “Have you ever seen anything like this on a quick-bang MRI before?” Thinking, surely babies move a little bit during these tests. He said no. They told us to go home, not to feed Peri for six hours and to come back at five to get her started on her anesthesia. We left the hospital, terrified and worried. We called my best friend Lauren to help us with Brittain and Delaney, we texted our families begging for prayers. I kept asking Eric – do you have a gut feeling? Do you think she’s fine? Neither one of us could answer.
We headed back to the hospital for the fourth time in less than 48 hours. They took Peri and repeated what they’d done the day before with anesthesia. Eric and I waited for an hour and were taken to her recovery area. She was mad. I’d be pretty mad too. She’d just woken up and didn’t want to be there. Who could blame her? I fed her and calmed her down. Walked her around a bit to get her to sleep and a Doctor came up to tell us that there was not blood on her brain and that it was indeed an artifact or error. He mentioned that all looked fine and there didn’t seem to be signs of hydrocephalus (spinal fluid in the brain) either. We were so relieved. I still felt upset and was still rattled - like part of me didn’t believe him. I was still scared I'd lose her.
The nurse said Peri would need to stay the night. I argued saying we were able to leave after she was sedated for her surgery the day prior. I knew in my mom-heart she was okay and she'd been through enough. The nurses kept saying no, she had to stay the night because she was born prematurely. Another night in a hospital after seven weeks in the NICU - I couldn’t handle it. Pretty sure I have PTSD from the NICU because when Eric offered to stay with her so I could put our other daughters in their own beds, I agreed to it. Insert Super Dad. I left the hospital at 10 p.m. to pick up Brittain and Del. The staff let us know she’d be released at about 6 a.m. the next morning. That did not happen. Discharge takes forever. Eric and Peri didn’t get home until 12:30 the next afternoon.
As the hectic week came to an end I seriously felt like we’d been punked. Like did that really happen? To come that close to actually thinking you might lose a child was unfathomable to me. Why were we put into such a panic, where was her neurosurgeon in all of this – we’d only spoken to the radiology staff. I had left several messages for our neurosurgeon and still today haven’t heard back (yes, we’re switching to a different one.) But it all seemed so unnecessary. There’s no use searching for answers and there's no point in trying to understand any of this. I just know I have to let it go and I can’t relive that moment anymore.
So I’ll close this post with something meaningful to us. It’s Spina Bifida Awareness month. What does that mean really? To me, it’s understanding WHAT it is. That it happens in the first 28 days of pregnancy, usually before you even know you’re pregnant. That it means “split spine” and occurs when a baby’s spine doesn’t close completely. That there’s no cure.
It’s about the moms who might be faced with this, sitting in a Doctor’s office trying to pull up google because they can’t comprehend what they’ve just been told. It’s not about taking folic acid, it’s not about doing anything really – I believe you’re chosen and there’s no real preventative. But for me, it’s helpful if people actually know WHAT Spina Bifida is when they see Peri. So they’re not saying, “I wonder what’s wrong with that girl.” And understanding that even though there is no cure, Peri WILL survive and prosper beyond what any of us could ever imagine.
SEPTEMBER 11, 2017: SHE'S HOME
Our baby is home! Peri was in the NICU for seven weeks and returned home with us on August 3. The afternoon she came home we sat and stared at her. It felt like we’d just had her, finally she was ours - we had her to ourselves! That first night I laid in my bed not sleeping a second, listening to her breathe. I kept peeking into her bassinet to make sure she was doing okay.
Her first week at home was tricky. We had to familiarize ourselves with her noises and cues. Several times while feeding her, she would choke and turn blue. It was terrifying, but thankfully for the NICU nurses we knew what to do. It was just a matter of holding her upright and rubbing her chest. She’d catch her breath, but to me that one second she wasn’t breathing felt like five minutes.
I thought bringing her home would give me more time…time to spend with her, take her to Target, meet friends for lunch…maybe nap. But not the case. We’ve had 15 appointments in the past four weeks.
We meet with her pediatrician, neurologist, orthopedic doctor, urologist and physical therapist almost weekly to discuss her brain, bladder control, clubbed feet and weight.
Brain: While in the NICU, Peri had two head ultrasounds to ensure fluid wasn’t entering her brain or causing hydrocephalus. If this happens, we’d have to insert a shunt to relieve the fluid. This was a big factor in fetal surgery, giving us that 60% chance she wouldn’t need a neural tube operation. So far so good as the ventricles in her brain are measuring normal. She’ll have an MRI on her brain and spine at the end of this month for a deeper look. I’m not looking forward to this but fingers crossed it’s all normal!
Bladder: Peri’s urologist is a lovely old man who has been working with spina bifida kids for years. At our first appointment he said that 95% of spina bifida kids have medium-high risk bladders, meaning they have to live with a catheter. Only 5% are low risk, not needing a catheter. In my mom mind I could hear him saying to me, “Your daughter will likely need a catheter.” The next step was to test her bladder and see if she was low, medium or high risk. I called Eric on our way home, feeling discouraged and he said, “Well, we’re just gonna go for that 5% baby!” I adored his optimism. Two weeks later Peri was tested… she had to have a catheter inserted to assess her bladder control and contraction. The Doctor came in after and said her bladder control was good and that right now her sphincter muscles and bladder contraction were communicating. I said, “So that’s really good!” He nodded yes. Then I said, “That means we’re in the 5%. That means she might not have to have a catheter at all?” He said, “That means she might not have to have a catheter at all.” I was floating. He erred on the side of caution explaining things could change and the test would have to be repeated in six months, but for now, that good news was ours to hold on to!
Clubbed Feet: Peri received her first casting treatment on August 24. This appointment was eye-opening to her condition. Where she seems like a normal baby to us, it was a reminder to me that she has a handicap. I asked what happens after the six weeks of casting. I was shown what they call “ponsetti boots”, two very ugly looking boots with a huge metal bar in the middle. My mouth dropped open and in my head I said “Um, no – she’s not wearing those.” I said to him, “How long is she supposed to wear those for? She can’t even wear pants with those things on.” The Doctor didn’t go into detail but mentioned she may have to wear them for four months. However, before that happens she’ll have surgery on her feet to release the tendons. This is also scheduled for later this month and is my biggest worry at the moment. She’ll be placed under anesthesia and I get anxious thinking of her possibly being in pain.
People keep telling me that casting and club feet really aren’t a big deal. But it feels like a big deal to me. I mean, this pretty much determines her mobility. The orthopedic doctor said she has a really good chance of walking…but WE know she’ll walk. It’s just such a process. So right now, we wake up very early once a week and haul our bottoms to the children’s hospital for our 7:20 a.m. appointment. I get to give her a bath after they unwrap her casts and the Doctor comes in after, repositions her feet and starts wrapping her in gauze, casting her again. After that we’re in for a fussy baby the next 48 hours. It takes her a bit to get used to the new casts and the new positioning.
Reflecting on all of this is still surreal. The other day I was staring at a photo of our family in my kitchen from a year ago. I realized that photo had been taken a year ago almost to the day. I got tears in my eyes… how easy and uncomplicated our life was then. It’s so frustrating watching your daughter go through something like this. Yes, she doesn’t know much different but we do.
In church this morning there was a young boy in a wheelchair in the same pew as us. He was autistic and screamed and laughed loudly at times, thrashing his body up and down and back and forth. I prayed for him and his mom. Brittain stared and asked questions. I whispered to her not to stare. After church I explained that he was special. He had a handicap, just like Peri has a handicap. I realized we are that family now. Other kids will ask their parents why Peri looks different, or walks different. And that’s okay.
Spina bifida is an accessory that will always be with us. Peri is our light, and as challenging as some days are, I know there will be a time we don’t think about spina bifida every hour of every day. She is the sweetest most tolerable little baby. She’s the real warrior facing all of these tests, exams and doctors with a brave face.
Now, looking at that family photo in my kitchen doesn’t make me sad, but excited…excited to make more family memories with Peri. We already get a lot of stares walking around with a tiny baby who has gigantic casts on her legs. But all five us still smile, still laugh and still have fun. My girls and husband are happy so that makes me happy. This is the new us, and actually, our new normal is pretty cool.