infant

twizzlers and jerky

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Beef jerky, Twizzlers, Cheeto puffs, graham cracker sticks.

This is my grocery list. No, we are not adopting a college student. This is all for my 8-month-old.

Before you run off and call Child Protective Services, he doesn’t actually ingest half of it. These are all tools for occupational therapy. And, to be fair, the OT is the one who made the grocery list. The hubs and toddler wish she would make our weekly lists, too.

We started Everett’s feeding evaluation on Tuesday fairly normal. I offered him baby food – sweet potatoes. One of his “faves.” He refused with dramatic gestures, as though I had just served him a sweaty sock. She makes a note and pulls out a bag of Cheeto puffs. Maybe she’s hungry? Nope. Two Cheeto puffs land on Everett’s tray. That’s a little different, but, really, Cheeto puffs are pretty close to Gerber puffs. No biggie.

Then, she breaks out the Twizzlers and beef jerky, and into his hand goes the Twizzler. He begins to gnaw on it whole-heartedly. At this point, I’m not sure if I should rip it from his hands as if she had just given my child a pair of scissors, or, contemplate on why I never thought to give my baby candy. That’ll get him eating. She explains it’s for texture, and he won’t actually ingest it. Oh, right.

We left with a new regime for breakfast, lunch and dinner. A five-step process. One part is to let our little guy get wild, crazy and messy in his puree. I’m not going to lie. This gives me a touch of anxiety. I’m cool with mess. You have to be with kids. Laundry hiding the floor. Okay. Food crumbs in every hidden crevice of the home. Sure. A car that now resembles your kid’s trashed closet no matter how many times you clean it. Yep.

What gives me anxiety is how he suddenly feels compelled to touch his helmet once his fingers are oozing with baby food. That helmet, that is not supposed to get wet or dirty and costs nearly $4,000 out of pocket. THAT gives me anxiety. And, we do take it off occasionally, but, we only have an hour window for the entire day. That makes for some super sonic eating and an expedited bath time.

We’ve had a few days to practice the process, and it’s a bit of a beating. The most successful of the steps is the beef jerky and Twizzlers. It’s basically the same concept as eating his feet or shoes, but much more sanitary.

Overcoming a sensory food aversion is nothing I imagined. It feels a little bizarro world. It will be a slow day in, day out filled with menus my toddler hasn’t even tasted. And, by the way, try explaining to big brother why his little brother can have a Twizzler for breakfast, but he can’t. ::smacks head::

Apparently, my idea of giving the kid a cheeseburger wasn’t too far fetched. Would you like fries with that?

more than a little picky

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aversion

Everett has a sensory food aversion. It’s not real severe, but it’s there. And, it will be a long, slow process to overcome with the occupational therapist. I can’t help but feel my Everett is being picked on. If it’s not one thing, it’s another.

On the drive home, I started mentally tallying all the obstacles he has faced in his short little life:

Two abdominal surgeries, NG tubes, loads of medications, open heart surgery, reflux, physical therapy for torticollis, plagiocephaly, the helmet, most likely another helmet, and now a sensory food aversion.

Then, I ended my pity party because, really, there are far more things to be grateful for than not.

I am thankful he is home in my arms. I am thankful it’s not his heart that brings us to the hospital this time. I am thankful he is healthy. I am thankful for his smiles and that he is happy. I am thankful that he can hear the “I love you’s” and sweet lullabies we sing. I am thankful he can see the wonders of this life and how his older brother delights him. I am thankful he has the voice to laugh and cry and say “Ma Ma” – and, eventually “Da Da” đŸ˜‰ I am thankful he can roll and scoot to explore the world around him. I am thankful he can feel my kisses and snuggles. And, I am thankful he can take food through his mouth even if he’d rather not.

I am thankful he is ours.

While today I am thankful, that doesn’t mean I won’t feel frustrated or upset tomorrow or the next day or the day after. I’m only human. Each day we have a choice. We can feel sorry for ourselves, or we can focus on our blessings. And, some days we just want to feel sorry. Some days we need that pity party. But, for me, that day is not today.

On a day that I didn’t get the answer I wanted, and I would much rather pout, I give thanks instead. I am thankful.

i’d rather eat my foot

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Every morning and every evening, we select one jar of baby food, open it, and then promptly throw it in the trash. At least, that’s how it feels.

Everett detests solids. Over a three month period, we’ve tried four or five different brands, different consistencies, real food, and even puffs – you know, sugar air – but, always we are met with pursed lips, overly dramatic grimaces, gags and spitting. On the rare occasion, he will actually down a small jar of sweet potatoes or squash. It has to be orange. Odd. But, even those “favorites” are often met with the same distaste.

It’s baffling to me honestly. That child will stick everything under the sun in his mouth and gnaw at it – a cooking utensil, our fingers, a shoe, our phones, Austin’s toys, or a personal favorite, the foot. But, the moment we slip in a bite of actual food, it is not up to his standards. You know, his high standards of feet and shoes.

It’s difficult not to compare our own children, but Austin was an eater. Breakfast, lunch and dinner, he loved his meals. You had to keep your fingers to yourself during mealtime less you lose one to that chomper. It took him a while to learn the concept of sharing one’s food.

And, thus, we are left with the question of whether Everett is just ridiculously picky, a late bloomer, or if he has an aversion, which apparently is common in kiddos with medical issues off the bat. Feeding evaluation should be scheduled for next week.

Maybe he just wants a cheeseburger.

i am yours, and you are mine

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On this day three years ago, Austin entered our lives in the darkness of early morning. This is the day I became a mother. This is the day I appreciated my own mother more than I ever had in my life. This is the day I learned the true definition of unconditional love.

Before we had children, I never held babies. Really. Never. I can name a single occasion that I held a baby without coercion from a friend or family member. They were such fragile, foreign creatures, and, frankly, I didn’t know what to do with them. Even while six months pregnant with our first, I reluctantly held a friend’s newborn. Needless to say, I was hoping this natural mothering instinct would kick in fast.

Every night, the hubs and I would lie in bed, watching Austin have a party in my tummy. We would talk to him. We would sing to him. We would pray for him. But, it still didn’t feel real.

Then, at 34 weeks pregnant, I started having contractions. Real contractions. I was given a steroid shot to speed up his lung development, and, immediately placed on bed rest in hopes that he would cook a little longer. That’s about the point I realized my time was up. I’m about to be a mom.

Much to the doctor’s surprise, that little boy held out for another four weeks, and, at 38 weeks pregnant, our precious Austin entered this world with a little bit of oxygen and only minor complications. As I cradled him for the very first time, my fears of inadequacy and instincts drifted away. I memorized every inch of his face in a split second, and I stared in awe at this amazing gift from God.

I was a mother, a mom, a mommy. I am his mommy for now and always.

Often we debate whether a woman becomes a mother during pregnancy or at birth or even after. There is no correct answer. Everyone comes to it in their own time. For me, there is no question. While I understood the concept of becoming a mother while pregnant, my complete heart and soul were not there until I looked into Austin’s big, beautiful eyes for the first time. There is no doubt I loved my child before he was born, but I believe becoming a mother is more than a label.

The day I became a mom, I knew it. I felt it. It became a part of me. My heart was fuller than I knew possible. He was mine to love, to kiss, to teach, to guide, to share. I knew I would do anything for my child.

On this day three years ago, I never could have imagined what the next few years would hold. Most days are incredibly hard. But, even on the hardest of days, that sweet giggle or impromptu “I love you” from the mouth of your child renews our spirit and gives us strength. The strength to love them unconditionally.

What an incredible gift to be called mom.

You, my sweet Austin, fill my life with laughter and pure love. You teach me. You open my eyes to see. You bring joy and light to a world full of darkness. I am blessed to be your mother. I am yours, and you are mine. Always.

maybe you should’ve counted a few more sheep

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naptime blog

I have a love, hate relationship with nap time at our house. In fact, some days I just can’t muster the courage to even try to put my children down. As nap time approaches, I do a quick poll in my head – Is it worth it today? Or, can we try to survive until bedtime?

Now, let me explain. I LOVE naps. It is a beautiful thing when the stars align and both of my children go down easy and sleep like sweet cherubs. I adore those days. And, really, the drifting off to sleep is not what sends me into near panic attacks. It’s the wake up.

The wake up that makes me want to hide under my own covers. The wake up that immediately makes me regret nap time. The wake up that is the reason I practically toss the children at the hubs when 5 o’clock hits.

I loathe the wake up. Imagine a mother grizzly bear. You have just trapped her, and then decide to steal her cub away. But, you don’t stop there. You then proceed to sit just out of her reach and taunt her, while arbitrarily throwing acorns at her head. Now, bottle all of that anger and rage.

Austin’s fury at wake up time is the equivalent of that mother grizzly bear.

tantrum_loading_please_wait_tee

He cries and screams and just when you think he’s done, you glance in his direction, and it begins all over again. Usually, this goes on for about an hour. Bribery begins shortly after the first wail: a cup of water, a cup of animal crackers and cartoons expertly positioned for maximum efficiency. Sometimes it turns the grizzly bear into a mere rabid dog, and other times it only prolongs the outburst when we run out of the beloved animal crackers.

The real fun is when both boys wake up simulataneously. Everett is a dream napper in the mornings. But, there is something about afternoon naps that leaves both my boys a shoe in for leading roles in The Exorcist. Everett completely loses his mind. You know that bottle he doesn’t need for another hour or so? Yeah. He’s decided he’s going to die if he doesn’t have it five minutes ago. Oh, and that diaper, that he just wet .05 seconds ago. Yes, that should have been changed preemptively.

When I hear people gush over how much they love nap time, and how they themselves sneak in a nap too, I dislike them a little bit… okay… a lot. Because even when the children are sleeping, I sit there waiting. Waiting for the explosion that is our afternoon. But, it’s okay. Because at the end of the day, I know there will be chocolate.

happy heart day

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E post3

*Thank you to a special friend for the inspiration for the title of this post. It seemed too perfect.

Continued from six months of living and i’ve never liked dominoes…

Two days home from discharge, and we knew something was really wrong. Everett cried nonstop. He was pale. He was sweating through his clothes and mine. And, his breathing was increasingly faster. These were all symptoms of his heart failure. And, he had maxed out his medications. We knew at this point, he wouldn’t be making it to our goal of four months without the surgery.

We moved his appointment up with the cardiologist from Friday to Tuesday. They did an echo, and things had changed. To everyone’s surprise, his heart was deteriorating faster than previously estimated. He needed surgery soon.

Everett was sent immediately to the  Cardiac ICU, where he was started on strong IV medicines. The plan was for him to stabilize for surgery the following week. The week was filled with new monitors, new medications and uncertainty. The Saturday before surgery, he spiked an unexplained fever, and we were no longer sure if he would be able to move forward with the surgery. If he still ran a fever on Sunday, we would have to discuss our options. But, God provided a miracle, and by Saturday night, he was already fever free. It left as quickly as it came on.

We didn’t sleep the night before surgery. We both stayed at the hospital, and I stayed in the room with Everett. Early morning came, and the nursing staff prepped him for surgery. As the sun awakened outside his room, sun rays and peace filled that little room, and I knew God would be with this child today. And, then, it was time.

It’s an odd experience handing your child over for open heart surgery, feelings of shock, disbelief and terror. As soon as they rolled him away, I broke down. I heaved and sobbed an ugly, ugly cry. Philip and I just held one another, praying for our sweet baby boy. The surgery lasted several hours. Family and friends surrounded us that day, praying for our sweet Everett and keeping our minds from wandering to the “what if” place. I am forever grateful to all of those people.

We received updates throughout the day, but the relief came when the surgeon appeared before us. He had finished, and things looked to be successful. But, his valves were in rough condition, and only time will tell if another surgery is needed down the road. We learned that surgery was only half the battle. The 48 hours following would be critical.

We were able to see him soon after surgery. I knew he would look rough, and I had prepared myself. But, nothing can really prepare yourself to see your two-month-old fresh from open heart surgery. As the nurses busied around him nonstop, I stroked his tiny hand as he lay there so small and helpless. Several minutes passed, and I needed air. I left the room, fell to the floor and sobbed my eyes out.

Philip sent the rest of our family away for the day, after I informed him that if anyone else was going to cry in the room with Everett then they were not allowed in. I was not strong enough for anyone else that day, and I just couldn’t bear it.

A day after surgery, Everett had already exceeded the surgeon’s expectations. He was off the pacemaker and only required minimal amounts of medications. There is no doubt that he is a fighter.

Two days after surgery, I was able to hold him. And, boy, did I hold that baby. The rest of the time in the hospital, I rarely left his side. The nurses would constantly remind me to stay hydrated and urge me to go eat. But, I was with my heart warrior, my little miracle, and I wasn’t going to let him go.

holding E after heart

And, on the third day, Everett smiled. Not a “Was that gas?” kind of smile, but a full open-mouthed grin. There was color in his face, a light in his eyes, and a smile on his face. The Lord had blessed us.

After surgery smile

Within a week of surgery, Everett was discharged home. And, this time, it was for good.

These past six months have still been filled with struggles, but more so, there has been joy. The joy of being together. The joy of overcoming such huge hurdles. And, the joy of appreciating and loving one another.

God has indeed blessed us with a beautiful mess.