Grayson

Just ten short months into our marriage my husband and I found out that we were expecting our sweet Grayson. We were shocked, thrilled, nervous and overwhelmed...to say the least. We had not "planned" to get pregnant that quickly into our marriage - but we all know the saying of "if you want to make God laugh, tell Him your plans." And boy, Grayson is far better than anything we could have ever planned or hoped for.

Very early on in my pregnancy I made a trip to the emergency room for a terrible stomach virus. I was quickly becoming dehydrated and on the verge of passing out because I couldn't keep any fluids down. I told the ER staff that I was roughly six weeks pregnant, but we hadn't even had our first OB appointment yet, so I really wasn't sure. They tried to doppler fetal heart tones, and of course with how early I was, we could not hear a heartbeat. The nurse reassured me that it was okay and they wouldn't necessarily expect to hear a heartbeat yet, but they needed to at least check. After that experience, I was incredibly scared that something would be wrong with the baby or that I might miscarry. I had been so sick, it didn't seem possible that our sweet baby could withstand so much so early on. But instead, that experience is just the beginning of Grayson's story.

A couple weeks later we went for our first OB appointment, we had our ultrasound and then met with the nurse practitioner. She very bluntly stated "I think you will miscarry based on how your ultrasound looks, but come back in ten days and we will reevaluate." We were devastated and the next ten days seemed to be the longest of our lives. But the ten days came and went and at our follow up appointment they said "Congratulations!" as we listened to the heartbeat of our little miracle. I treated the first trimester of pregnancy with uncertainty and fear - I had this gut feeling that something wasn't "right" and I had a hard time letting myself get excited as I feared something may still go terribly wrong. The following doctor's appointment went without complication and things were looking good. I made it to twelve weeks and finally felt out of the "danger zone" so we announced to all of our family and friends that we were expecting a new addition!

At the following appointment they discussed our option to do the standard genetic testing, and through God's incredible hand (no detail goes unnoticed with Him) we elected to have our genetic testing done via a detailed ultrasound with a local high risk OB doctor. My primary OB had told us that the scan tested for all the major genetic abnormalities and was often covered by insurance better than the blood test that is offered, so ultimately, that's why we decided to go that route. So at 15 weeks, we met with the high risk OB and had our genetic ultrasound where he said everything looked good and that he saw no evidence of any genetic abnormalities. He then asked that we follow up with him in a few weeks to do the standard 20 week anomaly scan (at the time we didn't think anything of this, but looking back, I know in my heart that he saw Grayson's limb difference in the first scan and wanted a second scan to confirm before he told us).

We left the genetic scan elated and finally feeling at ease about the whole pregnancy. Things seemed to be just fine, praise God! A few weeks went by, in that time we had our gender scan that revealed we were having a little boy! And what a wonderful moment that was! We returned to the high risk office for the anomaly scan as planned. That morning, I once again felt an overwhelming sense that something was wrong. The tech that was doing our scan was as pleasant as could be and made no indications that anything looked abnormal. I was feeling relieved and hopeful that all looked good when we went in to discuss the scan with the OB. He looked my husband and I straight in the eye and said "Your baby looks great, healthy and thriving, but he appears to be missing part of his left arm. It seems to just taper off after the elbow." Wow. Talk about a gut punch. My mother's intuition had been right - there was something that wasn't quite right...but oh if only we knew then just how perfect Grayson would be, limb difference and all.

The rest of the pregnancy, as you can imagine, was a rollercoaster of emotions. Fear, happiness, anger, sadness, excitement, guilt. You name it, we felt it. There was so much anxiety about Grayson's arm - praying for a miraculous and complete healing. Not yet fully understanding that Grayson and his limb difference was our perfect miracle. We spent hours researching limb differences, but what brought us the most peace was looking at the Lucky Fin Project and seeing pictures of thriving individuals with all sorts of limb differences. I can remember tears streaming down my face watching videos of little ones doing amazing things and living completely happy and healthy lives with their limb differences. We came to terms with Grayson's diagnosis the best that we could. I'm a firm believer that limb different parents (as with any parents of kiddos with physical, mental, emotional differences) really have no idea what to fully expect until you lay eyes on your sweet baby.

Holding true to the extremely challenging beginning of my pregnancy, the second half brought its own share of struggles. I was diagnosed with gestational hypertension fairly early on - 28 weeks, but thankfully, I didn't have the lab markers of preeclampsia, so I was put on modified bedrest for the remainder of the pregnancy. I had to leave my role as a bedside pediatric oncology nurse to sit behind a desk in an attempt to keep my blood pressure low enough for our little guy to keep cooking in there (while not burning up all of my time off before baby even arrived). With consistent headaches and swelling that was out of this world, everything remained stable. I had weekly doctor's appointments and Grayson kept looking great week after week.

At 36 weeks I went in for a final growth scan with the high risk doctor (who I was now following up with regularly in addition to my primary OB). That's when we got the news that Grayson had become extremely growth restricted due to my high blood pressure and was measuring at just a little over 4 pounds at 36 weeks, barely on the growth chart. I was sent to the hospital to be induced. And guess what, let's throw another complication in the mix! Just 30 minutes after starting my induction, my labor nurse came in to tell me that Grayson was not tolerating labor well at all and his heart rate was dropping and having a hard time recovering. I was taken back for a STAT c-section, where we got to meet our 4 pound 11 ounce baby in all his perfection. And once we finally laid eyes on our sweet boy, we realized everything would truly be okay. Grayson did amazing after delivery, he looked great, had strong lungs, ate well, and was seriously the cutest thing I had ever laid eyes on. He spent a week in the NICU because of extremely low blood sugars due to his small size, but other than that, he did absolutely amazing, tiny but mighty!

There were many days in the beginning that my husband and I had a hard time with Grayson's limb difference - solely from the standpoint of why our little guy, why couldn't he just be a "normal" baby just like everyone else seemed to have. I didn't worry what he would or would not do, but I grieved what he didn't have. But as we watched him grow week after week, we learned that he truly was unstoppable and his limb difference made him even more special! As I stopped to think about every roadblock we encountered in the pregnancy, and how at each passing God made a way, I realized our little boy was absolutely destined to be here, and that he was put on this earth to share his story and to make a difference. He has met every milestone perfectly on schedule (they told us he could be a month or two behind due to his limb difference). He is the sweetest little guy I have ever encountered and his eyes can melt your heart in about 2.5 seconds. He has a giggle that makes the entire room laugh and his smile lets him get away with pretty much whatever he wants. To top it all off, he is just about as ornery as they come. I wouldn't change a single thing about him!

We follow up with a limb difference clinic (how cool is it that this even exists?!) at the local children's hospital. They have been an incredible resource in making us feel normal, seen and understood. They gave us the definitive "diagnosis" of Grayson's limb difference and it is simply a congenital amputation, caused by an interruption of blood flow while in utero (likely while I was so sick and fighting that virus so early in pregnancy). The clinic offers support, encouragement, and let us know that Grayson is right on track and doing all that they want him to be doing and more. They have discussed prosthetics with us for if the time comes in a few years where Grayson asks for one, or if he needs one to do a certain task (like ride a bike or play an instrument). In the meantime, they follow along with us every 6 months and our visits mostly consist of Grayson making everyone laugh and playing with really fun toys. We see an occupational therapist at our appointments that we will eventually utilize in helping us teach Grayson how to do tasks with one hand (like tying shoes or buttoning shirts/pants, etc.) Overall, it has just been a phenomenal experience and we feel so blessed with the new connections that Grayson's lucky fin has brought us!

Our experiences out in public (so far) have been nothing short of incredible. We've had people ask us questions like, “Was he born that way?” More times than I can count I've had someone approach me and say I have a cousin, sister, uncle, etc. that looks just like him and they play this sport or do this for a career! Sometimes kiddos do a double take as they walk by or hold their gaze maybe a little longer than normal, and that's okay. I'm glad people are seeing him. That means the next time they encounter someone with a limb difference they might remember that one time they saw Grayson at the park or at the store and he was happy, healthy, loving life, and doing absolutely everything everyone else was doing. I have heard a few kids in passing ask their parents about his arm, and when situations allow, I fully intend on stopping to show these kiddos his arm and ask what questions they might have. It's our job as his parents to educate and inform other people. So my biggest piece of advice to parents - encourage your kids to come up and say hello, tell them it is completely okay to ask questions! Teach them to be kind and nonjudgemental about anyone that they may encounter that looks or acts a little differently than they do and have grace when they don't always act appropriately (they're only kids after all).

The time will come when I'm not there to stand up for my sweet boy and someone will be unkind or make a hurtful comment. So in the meantime, we will do our absolute best to teach Grayson all about his difference - that he is perfectly and wonderfully made and that he can do everything he puts his mind to, it just might take him a little longer to figure out and it might look a little different than the way others do it. I pray that he grows up in a world that accepts differences of all kinds. And I am so thankful that God has allowed us the great privilege of being Grayson's parents. Through him I have learned a whole lot more patience, kindness and acceptance.