The Hand (and Foot) We’re Dealt [Continued] – Questions, Answers, and Spilled Soup.

Instagram is a funny thing. Since Cade’s birth, I’ve posted pictures of myself from the two occasions that I put on makeup and clothes that were not leggings and an old, baggy t-shirt. The other day, I caught a glimpse of myself in the mirror. Half of my greasy hair was falling out of my scrunchie ponytail that had been originally done the day before (possibly two days before… okay, three.). Cade was screaming bloody murder in my arms. There was an ever-growing milk stain appearing on the front right side of my shirt. This is true #momlife, I thought to myself. What has happened to me?!

What you don’t see on Instagram. #nofilter

Later that day (or maybe it was a different day… who really knows anymore?), Lyndon came home from work to quite the spectacle. Cade was on the floor of the kitchen lying in his Snuggle Me Lounger. I, in all my glory, sat beside him on the floor. One of us was sobbing profusely. I’ll give you a hint. It wasn’t the baby.

After another seemingly endless day of attempting nursing, pumping, bottling, feeding, burping, diapering, etc. I was starving. I had ordered our dinner to be delivered and after having zero time to eat all day, I was both excited and ravenous when my steak salad and goat cheese crostinis arrived! Lyndon was due home from work any minute, so I figured I would get our plates set up at the table so we could quickly eat while Cade napped. I grabbed Lyndon’s soup from the bag. Correction. I grabbed the lid of Lyndon’s soup from the bag. The actual soup part separated from the lid, tipped over, and poured into my coveted bag of crostinis. I watched in horror as the delicious, delicious crostinis soaked up all the liquid and start disintegrating into his soup. This is when the water works started. Not only did I ruin my supper, but I ruined his too! In one wrong move, I had managed to pour his dinner into my dinner, throwing away a $60.00 meal, leaving us to starve (ha okay, slight exaggeration but it felt that way at the time). I started sobbing. Not just a few tears of frustration, like, full on, can’t breathe, crying my eyes out sobbing. It was clearly the straw that broke this very tired new mama’s back.

Naturally, Cade caught on to my distress and started squawking himself, which is what Lyndon came home to. The both of us unhappy on the kitchen floor. Lucky man. He wrapped his arms around me for a second, promising that it would be okay (later he admitted he was just relieved that I had dropped our supper rather than our baby!) and quickly fixed the situation as best he could by making some garlic toast and holding Cade. In the end, it could have been worse. If the soup had not landed in my crostini bag, I would not have been able to pour the majority of the soup back into his bowl… and my actual salad remained dry. So essentially, I only ruined half of each of our suppers. I suppose that’s a win.

The point of my story: The last few weeks have been an absolute blur. Each day feels like both the longest and the shortest day I’ve ever lived, depending on the minute. Each night feels the same depending on if it’s the part where I get to sleep (in an impossibly short increment) or the part where I get to feed my child (or pump) and rock him back to sleep. Every single day since we’ve been home from the hospital, I’ve thought about how badly I would just like the time to sit and write. I’ve been itching to continue sharing our story…

My previous blog post left us in the delivery room. We actually stayed there for four hours following Cade’s birth. When I was finally patched up and had regained the use of my left leg, we made our way to the room that would become our tiny home for the next four days and three nights. I will forever be thankful that this was a private room, as one of my biggest fears was being stuck recovering in a shared space whilst learning how to take care of a tiny human.

Speaking of which, as much as I would love to recount the goings on of the next few days chronologically, a) There is no way Cade will nap long enough for me to do so and b) My memory of these days in the hospital is a little fuzzy. I never quite realized the true torture that sleep deprivation is until now. And yes, those “annoying” people who said with a smile, “Sleep now!” when I complained about being unable to sleep in the third trimester were on to something that I was not privy to until I experienced it. Taking care of a newborn is not for the faint of heart.

In the future, I have every intention of writing full posts on several subjects pertaining to taking care of a newborn baby. For now, I will focus on our numerous interactions with various professionals in relation to Cade’s limb differences, but first, I will settle for the following working titles and summaries of potential entries to come:

“I Don’t Give a Suck” – A Story of How we Accidently Starved our Newborn Baby for 30 Hours (and Other Breastfeeding Woes)

  • My milk did not come in immediately.
  • I spent much of my time in the hospital attached to a breast pump very effectively pumping air (i.e. nothing) while watching my husband finger feed our precious newborn across the room.
  • My baby cannot be duped into thinking that a tube attached to a syringe of Similac is actually coming from my breast. The side eye from my newborn and refusal to engage in this mockery that was a feeding method was real.
  • Finger feeding is the most tedious way to feed a baby that was ever invented.
  • Bottles are not the devil. They are time effective and save your baby from his jaundiced state because you accidentally starved him.
Pump life.

 “Are Your Hormone’s Hormoning Again?” (and other real questions asked by your terrified husband)

  • Postpartum hormone shifts are a very real thing.
  • Just because your logical brain knows that your thoughts are crazy, doesn’t make the emotion attached to them any less real.
  • For the first week or two, at least once a day (usually in the evening) I cried. Lyndon would look at me, see tears rolling down my face, and ask me ‘what’s wrong’ on a repeat basis. Sometimes the answer was “I just love him so much”. Other times, the answer was related to my perceived inability to watch my beautiful boy go through the challenges that are to come in his life. Many times, the answer was nursing related. My new definition of defeat: requiring a “bottle top up” to satiate the newborn baby I just spent an hour and a half nursing.

“If He’s Crying, He’s Not Dying!”

  • Lyndon’s way of comforting us both on our first car ride with Cade in the car seat. This logic has since checked out in many different settings.

I digress. Back to our hospital stay…

While we had the pleasure of meeting many lovely, incredibly helpful nurses, one was a true standout. Every time a new nurse introduced herself and started the routine checkup of Cade, I felt compelled to mention Cade’s limb differences (this is clearly something I will have to analyze about myself and work on). “He has a unique hand and foot!” I quipped as the latest nurse started her routine checkup. To my surprise, this lovely young lady replied, “My niece also only has two fingers!”. I nearly fell over. What are the odds of that?! She shared that her sister recently had a baby girl who also has a lucky fin. I immediately felt a sense of calm with this young professional. Not that any of the other nurses would have judged our boy for his differences (again, my issue for even having this thought), but I felt comforted by the fact that this nurse loved a lucky fin babe in her own family! It turns out, her sister was one of the local mamas that I had connected with through this blog! Talk about a small world! I will forever be grateful for the kindness that this nurse showed us during such a vulnerable time, and the wisdom that she bestowed on us as two clueless new parents.

Beyond the antics of actually taking care of our little man, our room was a revolving door of professionals throughout our hospital stay. Looking back, I am beyond grateful for the efforts of every doctor who took the time to come to our room and assess Cade right then and there on my hospital bed. These visits saved us many appointment outings in the first couple weeks of his life! Given the discovery of Cade’s extra lucky fin, we knew our case had become a whole lot more complex. We had hoped to be in a place of having more answers at this point, but instead, we had more questions.

First up, a visit from our pediatric plastic surgeon that we had met within the weeks prior to Cade’s birth (recall Lyndon’s fight with a coffee lid and unwarranted Cubs and Scouts related musings). This plastic surgeon will be responsible for the assessment and treatment of Cade’s left hand moving forward. “The difference is more severe than expected,” the doctor told us after a thorough examination of his little hand. Not exactly what we had hoped to hear. This doctor told us that Cade does not have all of the bones in his hand and he is not certain that he has both his radius and ulna bone, and that if they are present, they may be smaller than expected resulting in a smaller forearm. This came as a surprise since our high-risk ultrasound previously suggested that he did have these particular bones. This was an especially interesting discovery given the fact that having these bones was previously considered evidence that his hand was an isolated incident (which we now know it is not, obviously). The doctor concluded by deciding to assess him again in six weeks. He reiterated what he said in our previous meeting – that his treatment would be all about function. Given that his two digits are not fused (another unexpected tidbit, as most had guessed that they would be!) the best course of action may even end up being no course of action! It will all depend on how he learns to use his “lucky fin” as he grows! The doctor then made a referral to pediatric orthopedics to tackle Cade’s right foot.

Cade’s “lucky fin” left hand 🧡 

An orthopedic resident came to see us next. He took a truncated family history (no, we are still not related to each other :p) and looked at Cade’s foot. He then took his data back to the lady who would become our orthopedics doctor. Later that day, she, with two residents in tow, came to take a look at Cade herself. After a brief examination, she described his foot as a case of Congenital Vertical Talis. A quick Google explained it like this:  “The talus bone has formed in the wrong position and other foot bones to the front of the talus have shifted on top of it. As a result, the front of the foot points up and may even rest against the front of the shin.” (Cade’s does indeed!). “The bottom of the foot is stiff and has no arch — in fact, it usually curves out — and is often described as ‘rocker bottom.’” [https://orthoinfo.aaos.org/en/diseases–conditions/vertical-talus/]. She explained to us that treatment would likely look like a series of castings starting at three months of age, followed by surgery to correct the placement of his bones. The good news: If all goes to plan, his foot should function as a typical foot does before Cade learns to pull himself to stand! Of course, this news was a huge relief as a terrifying question floating in my mind until this point was, “Will my child walk?”

This little piggy went to the market… 🧡

In addition to the Vertical Talus situation (and oddly enough, unrelated to the diagnosis) Cade’s right foot has four little toes which are webbed together (otherwise known as syndactyly). Even more interestingly, while his left foot appears typical at first glance (i.e. five regular sized toes on a functionally built foot), two of those little piggies are stuck together too! This all makes me giggle, as anyone who knows me well knows that I think that my own feet are the cutest part of my body :p … He takes after his mama… his little toes are precious, just in a very unique way!

Next up, medical genetics! The genetic counsellor that we had met with following the initial lucky fin discovery came to our room to chat about next steps. She explained that we currently do not have a geneticist available in Saskatchewan and that geneticists from other regions rotate in every few months to take on cases. Unfortunately, the geneticist is fully booked until the end of October, which is when she will meet Cade. In the meantime, we were to gather as many puzzle pieces as possible. First, we made sure that Cade’s umbilical cord blood was collected at birth. His blood (along with my own) has been sent away for the first round of chromosomal analysis. The counsellor told us that depending on those results, the next round of testing would be determined. Basically, it is a step-by-step, figure it out as you go kind of thing, as possibilities with genetics are endless. Beyond genetic testing, the geneticist requested that Cade have a full skeletal x-ray completed. It is possible that there are other skeletal differences going on that are not visible on the outside that would provide a clue as to the origin of his differences. Lyndon and I took Cade for x-rays the week following our release from the hospital. Again, that could be a blog post in itself, but for the sake of time, I will simply say, two people cried; yup, both Cade and I, again. He, because he doesn’t like being cold and x-rays must be done while naked. Me, because I was shut out of the room and could hear my baby wailing on the other side of the doors. It has occurred to me that I am going to have to toughen up in these coming months and be less of an emotional basket case. Cade is stronger than I am, clearly.

I also got a little more exercise than I bargained for in the first few days following giving birth as we took a few trips down to the medical imaging department. First, Cade received a chest and abdominal ultrasound where his organs (e.g. liver, kidneys, spleen, etc.) were inspected. Next, he received a cranial ultrasound where they examined his brain through the soft spots on his little head. We were elated to learn that both of these results came back free of concern! There is no way to describe the relief of positive test results these days.

Lastly, an echocardiogram was ordered so Cade’s heart could be examined. Someone came by our room from the cardiology department to do a series of preliminary data gathering prior to the completion of the echo. This involved an ECG (electrocardiogram) to measure the electrical activity in his heart and a measure of his circulation and oxygen in all four limbs. Cade passed all of these tests with flying colours, so the cardiology department opted not to rush completion of his echo. As such, this procedure will be completed at a later time, but thus far, there is no reason to suspect that his heart is in anything but working order!

And this concludes our hospital room guest list! After four days and three nights in the hospital, we finally headed home as a family.

As I write this, Cade is exactly four weeks old, and I still marvel at the fact that this tiny human now lives with us. Have my fears about his health subsided? Not completely. Are all of my questions answered? Definitely not. But it sure is comforting that we have this seemingly very typical baby on our hands who does everything and anything you would expect any newborn baby to do! It also helps that I am too busy charting his bodily functions on a Microsoft Word created chart titled “Cade’s Schedule” like the control freak that I am, to really give too much thought to anything besides caring for my sweet son. There may or may not be coloured highlighting involved in said charting. Alas, you can take a meticulous overly organized psychologist out of the office and turn her into a temporary stay-at-home mama, but you can’t take the “neurotic office-like organization” outta the girl ;P.

4 thoughts on “The Hand (and Foot) We’re Dealt [Continued] – Questions, Answers, and Spilled Soup.

  1. Denise says:

    He is absolutely gorgeous. Hope to one day meet him in person! Taking care of a tiny human is hard work. Been there and done that! My OB told me the most delightful thing on the birth of the 3rd. Remember your body had 9 months to build up to this day, don’t expect you will go back to your old self physically or mentally in a week or a month even! Take Care Amanda and I look forward to your next blog post ❤

    Like

  2. Caitlin Michelle says:

    Welcome, Cade, to the limb difference family! The road ahead will be an exciting one!

    I was born without my left arm in the early
    90s, and I can say honestly that my life so far has been pretty great. I met my husband (who also happens to have a limb difference!) while rock climbing. We bought a house in New Jersey last year, and we welcomed our twin boys 2.5 months ago.

    Quick note: I can’t speak for everyone with a limb difference, but it’s not hereditary in my or my husband’s cases. Both our boys were born with all their limbs and digits.

    I loved reading your post and bingeing the rest of your blog. You’re doing great, Mama! The first month home is the hardest, but I promise it gets a lot better, even one month down the road. (My boys are already sleeping 4-5 hours per night!)

    Can’t wait to read more about you and Cade!

    xo,
    Caitlin

    Like

    • amandaraeellis says:

      Aw thank you so much! 😘 And congratulations on your babies!! Twin boys?! Oh my goodness, seriously, I can’t imagine if Cade doubled 🙈 hahah… Mad respect!!

      And yes, we’ve hit the month mark and it is already infinitely better than the first little jaunt… We’re getting our groove and as I type this, my little one has been sleeping for 3.5 hours! (I’m up pumping, but that’s another story for another blog post 🙃).

      Also, you and your husband, what an awesome story!! 😍 I just added you back on insta… Love the wedding photos!

      Thanks again for reaching out and for the support! People like you are the ones who made me quickly realize that my boy is going to be more than fine! ❤️

      All the best right back at you, mama! Enjoy this crazy chaotic beautiful time of life! xo

      Like

  3. Angela says:

    It’s funny, parts of our story are kinda opposite: when we found out about our son’s limb difference, ultrasound showed that as well as missing his 4 fingers, his ulna was in the 5th percentile. Suggesting he would have a smaller forearm and also possibly issues with his wrist. But when he was born, it was fully formed. Our geneticist explained that even with in-depth ultrasound, there is still a high margin of error and they often get it wrong….which is more difficult when you’re on the side of being told everything is fine and then it’s not. We were also told to expect Poland Syndrome, but he didn’t have that either. As much as doctors know, there is still so much they don’t know.

    I also found it comforting after my son was born that really, his needs were just that of a new baby: milk, sleep, diaper change. His needs weren’t impacted by any limb difference. They are just babies who need their mamas to help make sense of this confusing world 🙂

    Like

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