The Graco Little Lounger™

This post was sponsored by Graco. The thoughts are all mine, though!

Every now and then I get an invite to some sponsored event for blogging. Usually it doesn’t have much to do with me or my readers, but when I got the invite for the Graco Little Lounger, I jumped all over it. I really hope this is helpful for some of you coming home with babies from the NICU, because I know how much I struggled trying to find the right equipment for Charlotte.

We used a product similar to this when Charlotte was home from the hospital, but there are a few features that the Little Lounger™ has that ours did not. Which is why I wanted to share this with all of you.

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Not my baby. But he models well!

First, the Little Lounger™ vibrates as well as rocks. I love this additional little sensory input, particularly for NICU babies. Additionally, there are multiple reclining positions, which is huge for babies with reflux like Charlotte. I like the extra padding in the Little Lounger™ that ours did not have, but most of all, I love that there are locks!

Yes. Locks. With the Little Lounger™ you can set the Rock Locks™, and precious, adoring, trouble making older siblings can’t rock the Little Lounger™. Baby and all his/her, medical accessories are super safe. I love it.

The accessory bar is easy to remove (Charlotte has been taking it off and running around the house with it all week. Score one for fine motor skills) but is nice to have. And finally, it is super easy to fold. Because when you are already packing up a baby with oxygen, a feeding pump, a suction machine, and diapers, ain’t nobody got time to mess with folding up the baby equipment.

I love things that make life easier when it’s been such a difficult start. I’m not one to run a bunch of sponsored posts, but I really do love how easy the Little Lounger™ can make life. Their slogan is “Take 15 minutes with the Graco Little Lounger™.” Fifteen minutes to shower, or talk to a therapist, or get dressed, or you know, brush your teeth.

But for babies like Charlotte, it was a long time before she was able to sit up, and “stations” (as we called them) were important. Each day she’d move around the room from the crib to her swing to her blanket to the next station and so on and so forth. We called it circuit training for infants. It was how she spent her life for more than the first year.

For us, having something that was safe and comfortable and easy was a life saver.

And honestly? I think that’s worth way more than 15 minutes.

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ImageA huge thanks to Sandra of mymariposastyle.com for showing us what we can do with those precious 15 minutes. Getting dressed! Did you know some people actually do that? She can totally help!

The Day to Day

Our days are pretty simple around here. (If you consider six therapy sessions, four days of special education, and a medical appointment or two every week “simple”). We’ve reached this point where we mostly just go about our day to day lives and have a crisis here and there.

Charlotte is currently sitting on the potty (not actually going potty, that’s a ridiculous thing for a three year old to do on the potty, just sitting there) singing her numbers.

“Eight, Nine, Seven, Ninechween, One, Three, Five, Sevenchween.”

This morning we walked Caleb to school and she cracked jokes and yelled at us the entire way. Charlotte loves to look at pictures, and it’s even better if they are pictures of her. She can name every princess, and she wields a plastic sword with the authority only a little sister can possess. She’s absolutely certain she should be able to dictate the lives of everyone around her. (We let her. It’s a problem.)

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Somewhere in the last three years, our daughter grew up into a little girl.

Our days are not consumed with the frantic question of “Will she live?” but rather with the ever present question of, “How will she live?”

It’s a weird transition to make, and it’s one I make with a very acute awareness that others will never have this chance.

I see her living and I stand in awe.

It’s just normal stuff,

but it’s miraculous.

Just very simple, day to day miracles.

NICU Nurse Appreciation

Last Sunday was the annual appreciation day for NICU nurses. There were lots of posts on my Facebook newsfeed thanking the nurses who time and time again saved and loved my friends’ babies. There was this poignant letter from a preemie mom to a NICU nurse that was shared time and time again. I thought a lot that day about what NICU nurses meant to us, and how we could possibly even begin to thank them for the role they played in our lives.

It’s difficult to write down what a NICU nurse means to a family like ours. We had a relatively unique experience in our NICU. Being at a community hospital meant that the NICU was very small– 15 beds was over capacity when we were there. But it was integrated into a much larger hospital network– The Childrens’ Hospital of Philadelphia– giving us access to arguably the best staff in the country. This combination meant that we became very close to some absolutely incredible nurses.

Many of the posts on Sunday focused on what NICU nurses do for neonates. To be certain, Charlotte is alive because of the care and attention her nurses brought to the table each and every day. There were days when the nurses knew before anyone else that CA needed something– a blood transfusion, a hold on her feeds, a day of very little touching. This intuition undoubtedly saved her life, and I see the product of their labors every time she smiles and dances across the room. Her laughter fills our home because they did more than their job–they loved her.

But more this year I couldn’t help but think of what else NICU nurses (and other unit staff!) did for our family.

I think about the way you taught me to care for Charlotte. Teaching me to change a diaper on a baby weighing barely a pound did more than just address the hygiene needs of our daughter– it reminded me of my place in her life. I was there to take care of her, and you always made sure I knew that.

I think of the times you led my father-in-law over to her crib, and gave him an update, making sure he understood the latest changes. He went out of his way to be there with our daughter, and you went out of your way to be there for him. You understood that her survival was dependent on all of us loving her, and you recognized the important role he played in all of that. I think of the times you prepared Charlotte to be moved from her bed to the arms of a loving grandparent, aunt, uncle, cousin or friend. You never complained that we were creating all this extra work for you (which, I know, we totally were!) but you saw that Charlotte had a community of people who loved her, and you made sure she felt connected to that community.

I think of the way you had to help Peter through those first terrifying days. His wife, in recovery, barely conscious, and his daughter, clinging to life with the thin rope of medical technology. I’ll never know what those hours were like, but I imagine him standing there, looking at her. I imagine you seeing him, knowing the road he was about to start down. I can only imagine the patience you must have had, as you watched him meet our baby girl. I think of the first time Caleb entered the NICU, and how accommodating you all were. He was a disaster, as always, but you re-directed him and answered his many questions. You gave him hope when I wasn’t sure I could. I think about that all the time.

I think about the way you shared your lives with me. We talked about sending a child with special needs away to camp– and how scary and wonderful it was. We talked about MRIs to check for cancer, about husbands being deployed, about daughters finding out they were pregnant. We talked about maternity leave, and the Steelers. We talked about how much it really, really sucks to see so many innocent babies in such torture, and we talked about what a blessing it was to have their presence in our lives. We talked about Charlotte’s future, her poop, and her daily progress. You cried with me when we got bad news and you stood stoic when I wasn’t sure I could.  You helped me keep pumping when I wanted to give up, and you helped me give up when I wanted to keep going, but knew I shouldn’t.

I think about the way the unit felt like a family– the way I missed you all so much when we were transferred to CHOP or even more so when we finally went home. I think about the way you still offer support and encouragement three years later, and how knowing you has changed the person I am today. I think about how you made us feel so special, and I think about all the other families who probably feel exactly the same way.

I think about you all, so very, very often.

Because I don’t just see you in Charlotte.

I see you in me.

Dear Charlotte: Loving You

Dear Charlotte Amalie,

This week was your first one back to school, after a long summer two week break. (No rest for the special education department!) You woke up enthusiastic about your day. You grabbed your pre-selected outfit and demanded we get you dressed immediately. You patiently waited for the bus with anticipation and climbed aboard without a single glance in my direction. “Bye, Momma! I love you! Make good choices!” you declared as you ran out the door. So much maturity in such an immature body.

I wonder how you see the world around you. As you climb on that bus, what do you see? What to do anticipate about the day? Do you know, Miss Charlotte Amalie, how much strength you have within you? Do you understand what you have accomplished in your few short years of life? Do you have any sense of the inspiration you are to me? To those around you?

As you get older, does it weigh on you? Do you feel the pressure to conform to my idea of who you are, and who you should become?

I worry that I’ve created a narrative for you; that I have along the way usurped the tale you have to tell. I worry that someday you will read this and feel a certain pressure to live up to some unobtainable bar. I worry that I will be one more voice in a chorus of anthems, telling you to be something that doesn’t resonate with your soul.

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Charlotte also thinks she is hysterical.

All I want to tell you is how much I desperately love you. It’s not the diagnoses, or the incredible story you have to tell. It’s not the inspiration I feel when I look at you. It’s not the trials you have overcome, or the way you adapt to your special accessories. Those things are peripheral to the individual you are becoming.

My dearest little girl, I love you.

I love the way you stumble as you run (often into walls). I love the way you jump up and down, feet never quite leaving the ground, when you get excited. I love the way you talk. as. though. every. word. has. punctuation. after. it. I love the way you shout, “That is not correct!” when someone isn’t doing something your way.

I love watching you get up and try again. You fail, oh so often, at oh so many thing, my dear. I’m not sure I could handle it myself. But you are so proud of yourself when you can come running out of a Physical Therapy session and declare, “I did it, Mama! I did it!”

I hope you never lose that excitement to succeed, that pride in your hard work. It teaches me to be a better person– to try more, and complain less.

Last night you fell asleep during your CPT session. As I picked your sleeping body up out of the chair, I saw how much you have grown. How quickly you are turning into a young girl; no longer the sick, fragile infant in the ICU. You spend so much of your life in motion, it was humbling to see you so still. Resting, preparing for another day. A day to concur, to challenge, to overcome.

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Charlotte will take on the world. One maniacal smile at a time.

Charlotte Amalie, your days don’t come easy. You fight tooth and nail for every single milestone. You are feisty and stubborn and determined. You are resilient. And vibrant. And remarkable.

And I love that about you.

I love it all.

You have so much faith in yourself, my dear. Girls are so often told they aren’t enough: not smart enough, not strong enough, not beautiful enough, not humble enough, not tough enough. Simply, not enough to cut it in this world. It scares me that someday you might hear that message and believe it.

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Disneyland, Aug 2013. We all know she’s a princess.

This morning, as I disconnected the ventilator, pulse oximeter and feeding tube, I told you how beautiful you were. You replied, “Beautiful in the whole wide world?”

Yes, my dear, the most beautiful in the whole wide world. Inside and out. Please, I beg of you, never stop believing that.

Don’t ever let anyone, even me, tell you what your story should be.

I will tell you this, though: No matter what your story becomes, I know I’m going to love the heck outta it.

Yours always,

Mama

Discharge Dates

There’s something that every NICU parent yearns for with all their might, mind, and strength:

A discharge date.

It looms in front of us, taunting us with it’s close proximity at times, and disappearing forever at others. But we focus on that discharge date because it represents a chance for normalcy. A chance for a family to feel whole, a chance for a child and a parent to finally assume their proper roles. A chance to finally begin, to finally start, to finally act on all the things we dreamt about in the NICU.

In Charlotte’s case, a discharge date from the NICU was merely the beginning of a short vacation at home, abruptly ended with a re-admission for a rather severe illness. Since that time, almost three years ago, we’ve made many, many phone calls to grandparents to inform them that Charlotte was back in the hospital.

For me, every time Charlotte is readmitted to the hospital, it is a reminder of how little control we have over her life. In our case, Charlotte’s readmissions are often open-ended. She’s not typically ill, but usually, malfunctioning in some capacity. (Currently, she’s readmitted for this nasty habit she has of not breathing.) We usually leave with more questions than answers, and often we are gaining medical devices instead of losing them.

I used to think that arriving at our NICU discharge date would solve everything; that life would suddenly be better if we could only make it home. Once there, however, we quickly realized life was just beginning to get interesting.

So new milestones emerged: things would be better once she was eating by mouth, or off of oxygen, or receiving the right therapies. Once she finished the right therapies, or started a new formula, or had that one procedure, things would settle down.

But here’s what I’ve learned in our experience:

Opportunities don’t wait for discharge dates.

Every time I watch the nurses place an ID band on her scarred ankles, I am reminded that there’s no discharge date from worrying about your children. I know this isn’t unique to special needs children, but there is something harsh about the reality check a hospital admission provides. A sign-on-the-dotted-line reminder that life is fragile and resilient, harsh and comforting, loud and muted: all at the same time.

If I waited for life to be perfect with Charlotte (or Caleb, or Peter, or anyone else for that matter), we would never begin, well, anything. It may be that next week we find out she’s 100% healthy and we’re free of medical devices for the rest of our lives. It may be 20 years from now that we receive that news. Or possibly never.

But if I spend my life waiting for a “discharge date” how many experiences will I miss? How many opportunities will pass us by as we sit in the waiting room of life?

I have one chance with Charlotte. One lifetime to convey her divine worth, her inherent power, her ability to thrive. One moment in time to teach her about love, about family, about sacrifice and success. One shot to explain how deeply her father loves her, and how unbelievably devoted her brother is to her.

If I am lucky, that moment will last 100 years, and her lifetime will continue long after I am gone. But whether it lasts another century, or our time together is gone tonight, matters little if I am not willing to act in the moment I have right now.

Truly, it is the only one any of us are guaranteed.