When we brought our son Grady home from the hospital, I had a lot of expectations for what life was going to be like. I imagined hours spent in a rocking chair, snuggled up with our sweet babe, kissing his soft head and perfect little hands. I knew there would be hard parts – adjusting to caring for the needs of a tiny human 24 hours a day is no joke, but as it turned out, the normal challenging parts of parenthood felt like a walk in the park compared to the stuff we didn’t see coming.

We’ve shared a little bit about Grady’s health issues on social media, but not in much detail. Writing this post has been on my heart a lot recently. I’ve been following the story of a fellow photographer who’s baby has had some medical problems. While reading her story, I found myself crying right along with her over the heartbreak she was feeling. It’s SO difficult as a new parent to watch your baby go through things like that. Your instinct to protect your child is so fierce that watching them be tested, poked and prodded (even when it’s completely necessary) feels like you are failing them. It brought back so many memories of what we went through with Grady and finally gave me the push I needed to sit down and write about his journey.

May 19, 2015 – Grady’s Birth

My pregnancy with Grady had been smooth sailing. He was born a week late which was a little tough on me, but no biggy for him. We had a wonderful and fairly uneventful delivery at Chandler Regional Medical Center, but the second they laid him on my chest the medical staff brought two things to our attention.

The first was quite obvious – he was born with 12 fingers! Sounds pretty weird, right? The doctors told us that it’s actually quite common and known in the medical community as “polydactyly.” 1 in 1,000 babies are born with extra digits on their hands or feet and it’s even more prevalent for babies in other ethnic groups. In Grady’s case, on each of his otherwise perfect hands he had a very tiny extra digit that was hanging on by just a small thread of tissue. Other than being a little worried about it looking weird in his newborn photos, we weren’t super concerned. In fact, it was kind of funny to text our family and tell them that he had 12 fingers since saying “10 finger and 10 toes” is such a common new baby thing. Several of them thought we were joking until they came to meet him ;-)

The other issue they pointed out was a small, slightly off centered dimple just above his butt. They told us that it was probably nothing, but that we needed to have an ultrasound to check it out. The fact that it was off centered could indicate a possible issue with his spine.

Every parent expects doctor appointments and hospital visits to be a part of having a kid, but normally that stuff happens when they get sick or fall off their bike at a much older age. Before Grady was even two weeks old, we took him to see a pediatric neurologist at Phoenix Children’s Hospital, a plastic surgeon at Cardon’s Children’s Hospital and had an ultrasound done on his spine. The ultrasound wasn’t conclusive, but it did indicate that he would need an MRI to rule out a potential spinal condition. After the meeting with our plastic surgeon, Dr. Workman, we knew he’d have to undergo surgery at 3 months old to remove his extra digits. Until then, he’d be in cute little mittens to make sure the extra digits didn’t get caught on anything and cause nerve damage to his hands.

It would be a simple surgery, but the idea of putting him under general anesthesia at such a young age was pretty scary. As it turned out, he’d also have to be put under for the MRI since he’d be too small to hold still for a 45 minute scan. We spent weeks on the phone trying to coordinate with two different departments of the hospital so that we could do both at the same time without having to put him under twice. It was no easy task, but we finally got them to agree to it and set a date for his surgery. The week before he had a round of pre-op x-rays and some blood work so the doctor would have everything she needed on the day of his procedure.

September 2, 2015 – Hand Surgery & MRI at Cardon’s Children Hospital

Grady was such a trooper on the day of his surgery! At only three months, he was already a great baby with a regular routine of eating and sleeping times. Raise your hand if your baby slept six to eight hours a night in his own crib from the day you brought him home? Luckiest parents ever, right? Even though we had to get him up super early, couldn’t feed him for hours and had a pretty long delay before they came to take him back, he was so good and just kept snuggling and falling asleep in our arms. They had us put him in this adorable tiny hospital gown and little scrub hat while we waited. I’ll never forgot how adorable he looked – like he was dressing up as a surgeon for Halloween. We met with his anesthesiologist who assured us that he would be with him the whole time – during the surgery, then to monitor him while they moved him to another part of the hospital for his MRI and back again to recovery.

The moment they came to get him was so hard. They don’t wheel little ones off in a bed (probably because it’s too traumatic for the parents), but watching the nurse carry him through those big double doors away from us was almost too much for our hearts to take. From the moment your baby is born, all you do is try to comfort and protect them. It feels incredibly wrong to hand them off to a stranger, fearing all of the scary things that could happen and not being able to be right there with them.

The surgery and scan took about four hours. Our doctor told us that everything went very well. We were so happy to see him as he was waking up in the recovery area. My best friend is a pediatric nurse and warned me that most little ones wake up pretty rough after anesthesia, so we were mentally prepared for his scared cries and disorientation. It was still hard to hear him cry, especially because he was kinda hoarse from the tubes that were in his throat for four hours. At least we knew it was normal and that he wasn’t in any kind of serious pain. It took him about an hour to calm down and drink a few ounces of milk so we could take him home. Other than some bandages that he wore on his hands for a few weeks, he was back to his normal, funny and happy self by the next day.

Seeing him start to use his hands and explore life without mittens was incredible! He started grabbing things and sticking his fingers in his mouth the second the bandages were off. It was like a brand new world for our sweet little guy and we LOVED it. I can’t tell you how many times I just stared at his perfect little hands and felt so thankful it was over.

September 29, 2015 – Tethered Spinal Cord Surgery at Phoenix Children’s Hospital

About a week later we went back to meet with his neurologist Dr. Bristol to get the results of his MRI. The news was not what we’d hoped for. The scan confirmed that Grady was born with what’s called a “tethered spinal cord.” A tethered cord is “a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column.” Here’s the best way I can explain it in non-medical terms: imagine that the spinal cord is like a rubber band made up of nerves. The rubber band is supposed to float inside the spine, (which is like a long tube) and rest somewhere in the middle. With a tethered cord, it gets fused lower down in the spine during the early weeks of development, (usually within the first 27 days of conception) causing an the cord to stretch. If it’s untreated it can cause pain and weakness in the legs, back and feet and even prevent a child from walking.

Hard to believe a tiny dimple had led us to his diagnosis. We were glad that it was detected early so it could be corrected and hopefully not prevent him from hitting most of his milestones. At the same time though, knowing our precious baby would have to undergo spinal surgery in just a couple weeks made me sick to my stomach. Minor plastic surgery on his hands was one thing, but SPINE surgery was so much more serious. Our neurologist told us that she expected it to be a minimally invasive procedure, but it would all depend on what she found when she got in there. We also learned that any child undergoing spine and brain related surgery would be kept in the ICU for at least two nights. Knowing he would be in the ICU (Intensive Care Unit) took our fears to a whole new level. The ICU is for people who are seriously ill or injured, not for our otherwise healthy, 3 month old!

The other stressful element was imagining what life would be like during Grady’s recovery. They told us that he’d have to be on his stomach for a few weeks while he healed. His stomach? Hadn’t we just spent the last 12 months of pregnancy and infant care being told that it was NOT SAFE for an infant to sleep on their belly? Not to mention the fact that Grady HATED “tummy time.” We were diligent about forcing him to do it several times a day, but he was just NOT a kid who enjoyed being on his belly.  How would we keep him content and happy for several weeks of recovery in a position that he couldn’t stand to be in for more than a few minutes at a time?

It felt like there were a million things to be afraid of when the day of his surgery arrived. Once again, our sweet boy was amazing. Seriously guys, he was and still is (for the most part), such an easy going kid which made these tough moments just a little bit easier. They had to draw his blood from a vein in his head, which is not unusual with babies, but super traumatic for us. He only cried for a minute and then just fell asleep, resting peacefully until they came to take him back. I held him tighter than ever as we waited and prayed for him and his doctors in that cold pre-op room.

The surgery was pretty short (thankfully) and Dr. Bristol came out to tell us that everything went well. She was able to correct Grady’s tethered cord and didn’t expect there to be any long term effects. (Praise the Lord!) It’s a bit of a blur, but I remember running through the hospital trying to get to his recovery room as soon as we could. While we were elated for such good news, it was still pretty emotional to see our sweet boy in the ICU. He was covered in wires and tubes and breathing through an oxygen mask. He was heavily sedated to keep him from moving around too much, but he did wake up just enough to make the saddest little whimper cries I’d ever heard. It was SO hard not to be able to pick him up and hold him. Everything in me wanted to grab him off that bed and snuggle those sad cries away, but I knew I couldn’t.

That night was rough. The nurses came in every couple hours to check on him. They had to wake him up, shine a light in his eyes and check his vitals which resulted in a whole lot more whimper cries. All we could do was stand by his bed, stroke his little head and tell him it would all be ok. None of us got much sleep.

The next morning, things were looking up! They removed Grady’s IV and he was starting to show an interest in eating. I had been pumping and giving him milk from a bottle, but the first time they let me pick him up and nurse him felt like heaven! He was still hooked up to monitors and other wires, but it felt SO good to hold him. By the afternoon, our little man was starting to act like himself – smiling and giggling at his favorite toys. After seeing that, the nurses told us that he had been approved to go home early! What a relief! We were not looking forward to another night in the ICU.

As we were leaving, we also found out that Grady wasn’t going to be restricted to his belly. The recovery instructions we’d received at the beginning were the “worst case scenario” if things hadn’t gone so smoothly. What a relief! Other than dressing changes and not too much activity, he was fine to resume his usual routine. We made him a special onesie to wear for the ride home from the hospital. I think he was pretty proud of it ;-) He was completely back to normal within a week. Our surgeon told us that one of the best things about working with kids is that nobody tells them that their recovery should be slow and painful. If they were adults, they’d be asking for super strong pain meds and weeks off work after spinal surgery. Kids bounce back so much faster because they don’t know any better. That was certainly the case with our brave little guy!

Other Health Issues – Nystagmus & Vomiting

While two surgeries at 3 months old were certainly the most dramatic parts of Grady’s health journey, there are still a few more pieces of his story. Other medical issues showed up along the way which led to further tests, many specialists and more doctors’ appointments then I can count. Our little guy has become quite the professional patient! Since every new doctor requires a health history, I keep a list of all his doctors in a document on my phone so it’s easier to remember them all. There are SIX specialists in addition to his regular pediatrician – Plastic Surgeon, Neurologist, Ophthalmologist, Urologist, Allergist, Gastroenterologist and Genetics.  Since birth, he’s had an ultrasound, two MRIs, a swallow study, an Upper GI, allergy testing, and genetics testing. And two surgeries of course.

Early on we noticed an issue with his eyes called “Nystagmus.” It basically causes the eyes to move rapidly or “wiggle” back and forth, indicating that the brain is trying to compensate for a vision issue. It used to happen a lot when he was tiny (especially when he was tired), but he’s pretty much grown out of it now. His eye doctor told us right away that he was nearsighted and would need to wear glasses, but that wasn’t much of a surprise considering both of us already do.

Grady also throws up A LOT, which is still something we’re struggling to figure out. And it’s not just your average, “your kid gets sick once in awhile and pukes” kind of thing. It’s often a daily occurrence. It started when he was eight months old and begin to eat more solid foods. It usually happens when he’s eating. He doesn’t cry when it happens – in fact, he typically asks for more food – so we feel better knowing it’s not causing him too much pain. We’ve been through quite a lot of testing to figure this one out and so far, we’ve only been able to determine that it’s NOT acid reflux, a deformity in his throat or stomach or any kind of allergy. He’s done some feeding therapy (bet you didn’t know that was a thing, right?) and it did help some, but it still hasn’t gone away.

Genetic Testing – Microduplication of the 16th chromosome and Stickler Syndrome

Because he has had so many issues, our doctors recommended that we pursue genetic testing to see if all of these things could be related. Genetic testing can be kind of a scary thing. They warn you going into it that you may get information that you don’t want to know or that can cause family tension. We understood the warnings, but chose to move forward anyway. For us, it was a matter of doing what was best for our kid and his future. If there were going to be more things coming down the road, we wanted to be as proactive as we could to ensure the best possible outcome for his health and for his future.

Just after his first birthday, we started with “Chromosome Microarray Testing” which looked at the chromosomes to determine if there was any missing or extra genetic material in his DNA. What they found was a Micro Duplication in his 16^th chromosome (a small amount of extra material). However, it didn’t really explain the medical issues he’d been experiencing. This diagnosis was kind of a tough one for me because it left us with so many more questions than answers. The studies that have been done on people with this genetic abnormality are pretty inconclusive.  The symptoms are all over the board – some severe and some mild. Some things sounded super scary, like behavior disorders such as schizophrenia, bipolar disorder and autism. And some were more “treatable” issues like developmental delays in crawling, walking and speech or a higher frequency of ADHD and depression. He also told us that it’s nearly impossible to determine how or even if the duplication will have any effect on Grady at all.

Since genetic testing is such a new field, the only people who are getting tested are those who have a reason to so it’s typically people with fairly severe existing issues. Without much of a “control group” there’s no way to know how many of us are walking around with small genetic abnormalities like a micro duplication and don’t even know it. For the most part, Dr. Aleck told us that he didn’t feel like this abnormality explained much about Grady. His medical issues weren’t among the symptoms and nothing in his temperament or development really fit what the studies had shown at this time. At the time he was tested, he was a bit behind on some of his typical first year milestones, but nothing that couldn’t easily be attributed to not having normal use of his hands for his first few months of his life and having had spinal surgery at a very early age. His advice was to move forward with further testing and to proceed as if nothing was wrong, but with a “watchful” eye.

This is where I struggled with this part of his disgnosis. For all intents and purposes, Grady is a completely normal kid.  A GREAT one in fact! There’s not a single warning sign in his temperament or behavior to indicate otherwise. However, now knowing what we know, it puts us in a position to over analyze otherwise normal behavior. When he’s a teenager and has trouble getting over a breakup for a couple weeks, are we going to feel like we should rush him in to be put on depression meds? How do you find that balance as a parent? That’s a reality we just have to face and pray often that God gives us the wisdom to do the right thing for him. I suppose that’s why they give you all those warnings about genetic testing, right? That kind of knowledge can affect the outcome of your decisions so it can feel like a burden as well as a resource.

The next step in Genetic testing was to do “Whole Exome Sequencing” to take a closer look at Grady’s genes.  The best way to explain the difference in the two tests is to compare DNA to a book. The first test looked at the chapters of the book (or the Chromosomes.) The Whole Exome Sequencing would look at the individual pages, words and letters of the book (the genes.)  This testing revealed another diagnoses, a genetic disorder called Stickler Syndrome. Oddly enough, our Ophthalmologist had predicted this based on Grady’s vision and our family history of eye issues.  The most common symptoms of Stickler Syndrome are nearsightedness, cataracts, glaucoma and retinal detachments – all of which have been experienced by multiple members of our family. So while it’s not fun stuff, at least we know it’s all treatable and can make sure to be very proactive about his eye care in the long term.

Once again though, this disorder still didn’t connect the dots with Grady’s other medical issues. As it stands, there’s really no further testing to be done until technology improves. So we’re left to believe that most of his issues are by chance and not related to each other. In a way, it’s kind of a relief even though we went into the testing looking for answers. The outcome could have been a whole lot scarier in so many ways.

Go Grady Go!

Reading all of this makes Grady’s little life sound quite dramatic, when in reality, he’s a totally normal kid! Through it all, he’s been such an easy going, happy little dude. His medical issues haven’t affected his daily life all that much which has been SUCH a huge blessing for us. As I mentioned earlier, he did experience some delays in the typical gross motor milestones. He sat up on his own at 9 months, crawled at 16 months and didn’t walk until around 20 months all of which are late by most standards. Looking at him now, you’d never even know he was behind. Today he’s a very active, super funny, incredibly loving toddler who celebrated his second birthday in May. He’s learning new words every day and doing all of the things every other toddler does (like having lots of very strong opinions about everything. LOL!) He struggled with his weight early on and was always in the 6-10th percentile on the growth curve, but now he’s in the 70th and growing like a weed! We’ve even been told that he’s “too smart” for public preschool because he can already meet (and exceed) the three skill tests that the state uses to determine if a child is qualified to attend. He’s a pretty amazing kid.

We started working with an amazing physical therapist Sarah (who we adore) through a program called RISE Early Intervention Services when Grady was about 14 months old. I think one of our few regrets through all of this is that we didn’t start working with her sooner. Physical therapy was first suggested to us just after his spinal surgery. At the time, he wasn’t that far behind the curve and we didn’t want to admit that he wasn’t progressing as fast as he should be. We just wanted him to be like every other kid. When we first started working with Sarah, other kids his age were crawling and standing, but Grady was only doing a “half army crawl” using only one side of his body. We called it the “wounded soldier.” Within a week of working with her he had already progressed to a true army crawl. She’s been a huge part of helping him develop and get back on track. Until just recently, she would come to our house weekly and we’d talk about his progress and come up with games and activities that would help him work on his gross motor skills. It was slow going at times, because (as Sarah puts it) “He’s stupid smart!” (In a good way). So it’s hard to trick him into doing anything he’s not “in the mood” for. If there’s one thing we’ve learned, it’s that Grady does stuff in his own time. In a lot of ways, I think Sarah has been a bigger help to us then to Grady. Having someone else who gets him and is in his corner has been SUCH a huge blessing. When your kid is “behind” you spend a lot of time feeling bad when other parents talk about what their kids are doing. Having a weekly chance to brag about him and have somebody else to get excited with us was SO good for our hearts. I don’t know if she even realizes how much that has meant to us. It was therapy for us too!  We love you Sarah! (And yes, as you can see from the cute photo below, one time they accidentally wore matching outfits!)

We also owe a HUGE thanks to Grady’s wonderful pediatrician Dr. David Ciminello from Desert Shores Pediatrics in Chandler. He has been a great support and resource through all of this. For a while, it felt like every single time we went to a doctor it was more bad news. It was so easy to get overwhelmed by it all. His calm demeanor and honest approach has been a lifesaver as we’ve navigated the ins and outs of this adventure. There were many times when he’d personally call us to check in after we’d met with a specialist. I actually took this silly selfie with Grady while we were waiting for his two-year appointment. We’ve been such frequent visitors in the past two years that it was kind of sad when Dr. C told us we didn’t have to come back until his three-year check up! We had to promise him that he’d get sick a time or two so he wouldn’t miss us too much ;-)

We’ve been incredibly blessed to have the support of our families and some dear friends during all of this as well. They’ve sat in hospital waiting rooms, helped us piece together family history, brought us food when we just couldn’t manage, called to check in and spent endless hours listening to our thoughts, fears and frustrations. We’ve felt so loved and cared for through the good times and the not so good ones.  They say “it takes a village to raise a child” and we couldn’t have asked for a better one for our little man!

This journey has been a challenging one to say the least and most certainly not what we expected from our first few years of parenthood. Ultimately, we still feel pretty darn lucky because we got the most incredible kid out of it all. He’s brought us joy far beyond anything we could have ever imagined. We’re grateful that God chose us to be his parents and walked through these tough times right along with us. He answered so many prayers along the way.

For all those other parents struggling with kids who have medical issues, we are right there with you. You are not alone. We’ve lived in the trenches of discouraging news. We’ve felt the heartbreak of watching our precious, perfect baby undergo hardships and challenges. We know exactly how you feel – completely powerless. We’re so glad that Grady won’t remember the surgeries, tests, blood draws and doctors appointments, even if we will never forget them. His journey hasn’t been exactly what we had imagined, but there have also been so many things to celebrate and so many blessings! We couldn’t be more thankful that we get to be his Mama & Dada. Go Grady Go!