Wednesday, March 20, 2013

FREE

There's something about the beach, the sand and the surf, that allows for a change in perspective...sets you free from your worries. This weekend, I felt free and I'm pretty sure Jack felt it too. Free from anxiety about germs and RSV and illness for Jack. We are FINALLY at the tail end of our 3rd RSV/FLU season! While I don't think I will ever be completely free of anxiety about Jack's health (that darn chronic lung disease is nasty), I do feel like we are entering a new era of "typical" living. We walked on the beach, window shopped, and ate at three (yes three!) different restaurants. That's more restaurants than Jack has been in during his entire 2.5 years! And he loved the new atmosphere...live music...meals with family...friendly waiters...all of it. We have done some typical things, here and there, but this felt like the beginning of real life...free from RSV isolation and free to do "normal" family things, whatever that is! I look forward to many more weekends like this one...I just make sure to pack plenty of sanitizing wipes, high chair covers and throw-away placemats! (Either way, it's a much better feeling than I had last year at this time when I had major anxiety about taking Jack into Grotto's pizza...so we ate outside in the 40 degree chill!)

Catching bubbles with Jenna!

Lunch at the Greene Turtle. "Enough pictures, Mommy!"

Diggers and the beach...a perfect combination for our Jack.

Trying out a big boy bed in the NEMO room at the beach house.

Testing the waters with cousin Jenna...she was brave enough to take off her shoes.

Chasing the seagulls!

My name is Jack and I like long walks on the beach in winter.

Smile!

The obligatory family photo.


Dinner at Jake's.

Friday, March 15, 2013

Flashback Friday: Lucky

How lucky are we to have this little leprechaun in our life? Last year at this time, Jack was 19 months old and just starting to walk on his own. It was one of those major milestones that I worried would never come. Of course, he now walks or runs all over the place and I love it! Last year, Jack also had his first bite of the famous Grotto's pizza and he loved it!

Jack and his cousin, St. Patrick's Day weekend 2012.

Wednesday, March 13, 2013

More Than You Can Handle

There are a few amazing blog posts out there about what to say or not to say to a preemie parent. Here’s one of those statements that I would absolutely include on my version of a “what not to say” list:

God doesn’t give you more than you can handle.*

We’ve all heard this phrase before and many of us have probably even used it to comfort someone in times of trouble, loss, or grief. My own experience would suggest that it may not be the most comforting phrase to use in a traumatic situation. Even before I had Jack, this phrase never sat well with me. I didn’t understand why God would choose to give some people more heartache or pain than others, whether they could handle it or not. After our traumatic birth experience and the following stressful NICU time with Jack, this phrase was one that was not well-received by me, but I kept quiet because I knew whoever said it meant well (I hope). All I could think was, “Why did God choose us to handle this? Why not someone else?”

About a year ago, I got into a discussion it was mentioned that I seemed angry and was it possibly because I felt I was given too much to handle? My immediate response was “No,” yet I could feel myself get angrier by the second. I’ve been honest and said it many times, this experience with prematurity was not what I signed up for when I chose to be a parent. But, I AM handling it (and pretty well, I’d like to think). While this journey is not at all what I expected, it IS being handled. I’ve made sacrifices, like leaving my career and not leaving the house for days on end, and struggled with desperation and PTSD. But, again, I’m handling it and I’m actually enjoying it at this point. Jack is such a joy to be around! Sure, it wasn’t great that I missed out on the third trimester and didn’t get to take my baby home for 112 days. And it was distressing to think that my life was also at risk. Those things sometimes make me sad. But they don’t make me angry. But what IS awful is that Jack missed out on a third trimester and a healthy start, which is so unfair for HIM (more than it is for me), and will always, always make me angry. He was given more than any tiny human being should ever have to handle – he wasn’t comforted or held by parents every night when he needed comfort the most, he was left every day for the first four months of his life, he had tubes shoved down his throat and blood drawn from his head. I could go on and on…and yet he is only 2 years old. So I ask – is this what people mean when they speak this phrase? That God gave him this journey with prematurity? That God really thinks Jack (and other premature babies like him) can and should handle all of this?

Premature birth at 28 weeks

Interrupted development of his brain, lungs, skin, etc.

3 heart defects: PDA, VSD, PFO

Hypotension, Acidosis, Hyponatremia

Developmental Delays

Blood transfusions

112 days in the hospital

11 days intubated on a ventilator

Almost 8 months with a feeding tube

Over 20 shots and/or vaccinations in less than 2 years

PICC line

Reflux

Chronic Lung Disease

2 years of Occupational Therapy

1.5 years of Physical Therapy

1 year of Speech Therapy

Diuretics and Steroids

10 months of respiratory support

Twice daily breathing treatments

Multiple x-rays

Apneas and Bradys

So, God gave Jack ALL that to handle? Really, we are going to put that on 2-pound baby? What kind of God does that? (Please know that I believe in God…I just DO NOT believe what this phrase implies). Of course, we all know that Jack has handled all of that, and most of the time with a smile on his face. And because he is such an amazing, strong little boy, he could probably handle even more. But, he should not have had to handle anything close to it. And because he has "handled" so much already, has he hit the quota and we no longer have to worry about what's next for him? I can only hope. I get that God might choose an adult to handle tough, traumatic things. But a baby? A fragile, premature newborn? I just can’t comprehend it. So no, I’m not falling for the “God won’t give you more than you can handle” phrase.

So yes, there is anger. It’s not at what happened to me, but what happened to my child. Anger that this little boy was given more than any human being should have to handle. Was I given too much? Maybe, but I’ve handled it and would again and would handle even more if necessary. But he...he was given too much to handle, at 2 pound and even now, at 2 years. And that’s all I have to say about that. Amen.

*By the way, “While this phrase sounds very positive and affirming, you will not find ‘God won’t give you more than you can handle’ anywhere within the pages of the Bible. It simply doesn’t exist.” (from http://www.bloggingtheologically.com/2009/07/20/everyday-theology-god-wont-give-you-more-than-you-can-handle/)

Friday, March 8, 2013

Dear Preemie Parents

Sunday, March 10^th, is the 2^nd annual Parents of Preemies Day! I didn’t necessarily “celebrate” it last year because I wasn’t exactly proud of myself as a parent, particularly because I was still processing the guilt of my body’s failure to stay pregnant and grieving the loss of a healthy start for my little boy. This year, while I still don’t know if I’m yet ready to celebrate myself, I am certainly willing to celebrate preemie parents.

Dear Preemie Parents:

Thank you! Those two words cannot express the depth of gratitude I feel toward this group that welcomed me to the “club” that no one wants to or expects to join. I have connected with so many of you, in real life and online, and I know with absolute certainty, that I would not have survived these last two+ years without you all. When my little boy was still in the NICU, I often wished that another preemie mom would pull up a chair and sit with me and share her story. Or listen to mine. Even though I have a very large, supportive family, there were things I was feeling and experiencing that many of them just couldn’t comprehend. Nor could I. While I was sitting by Jack’s isolette or finishing up another tube feeding at home, I just wished to sit with a mom who knew exactly what I was going through. Someone who wouldn’t say, “Oh, he’ll be fine,” especially when we didn't know if he would be. But would say, “It’s okay to be sad and scared and feel overwhelmed.” It was such an isolating time, because of the need to keep Jack healthy, but also because of my feeling as though no one understood what I was going through as a new mom to an amazing, yet fragile little boy. As I started to venture out into the “world” of prematurity, the connections I made and support I received felt like a balm to my tortured soul. It is a special world, indeed.

Thank you! Some of you probably know that you helped me, but others may not. I hope I don’t forget anyone with my scattered mommy brain, but if I do, know that my hurting heart has not forgotten. To the one who let me know that even though what we had experienced wasn’t “normal,” my reactions and my feelings were in fact typical of a preemie parent - Jessi at Life with Jack. To the one who helped relieve my self-induced pressure to move on and let me know that there was no need to get over it – Tatum at Ain’t No Rollercoaster. To the one who came to the hospital to let me know that we might just be okay and leaving the NICU to get a cup of coffee or tea, was in fact, necessary – Jess (aka Adam’s mom). To the one who informed me of all I needed to know about our future with prematurity – Amanda at Understanding Prematurity. And when the professional therapist just wasn’t “getting it” and I was on my way to really losing it, you were the one who offered me a life-line and a support group that may have just saved me (and is totally worth the 2 hour round trip each month) – Melissa at The Preemie Life. To the one who wrote a book just for me. It was just for me, right? Okay, so maybe it wasn’t just for me, but it sure feels like it every time I read it – Kasey, author of Preemie: Lessons in Love, Life and Motherhood. To the one who helped me find a monitor for Jack, when I just wasn’t ready to give up that safety-net just yet – Michelle at Busy Breathers LLC. To the first of many who created online groups that offered support and understanding during those long days of RSV isolation – Tammy. To the one who offered toys and clothes for our boy, when finances were rough – Amy. To the ones who allowed us to share our story – Jackie at The Saving Grace Project and Deb at Preemie World. To the one who allowed me to celebrate my husband – Joel at Papas of Preemies. To those who taught me about loss and grieving, about hope and moving forward – Jana at Keeping up with the Kimmels and Heather at The Spohrs are Multiplying. To the ones whom I’ve never met, yet could still connect with through our shared, yet unique journeys – Kristen, Candie, and Sonja. And, finally, to the newer ones, who are allowing me to support them, and in doing so, helping me to heal at the same time – Jenna, Christi, Dana, Leslie, Jessie. To all of you. Thank you all for letting me know that its okay, and absolutely necessary, to talk about the realities of prematurity.

Happy Parent of Preemies Day to YOU!

From two very proud preemie parents, Heather & Jeff

Thursday, March 7, 2013

Flashback Friday: Growing up too fast? No way!

In the past few weeks, Jack has been doing some really awesome things. He just started using a fork at meals (not all the time, but he CAN do it), he can recited the entire alphabet when he should be napping, he has peed in the potty often, and his speech has really improved lately. Just yesterday, he said, “Screwdriver.”

Okay, so it sounds more like “scoobaba,” but we understand him. He’s also been using language to express what he wants: “I want playdoh!” “I want juice!” Today, while we were playing with…you guessed it…playdoh, I noticed that his once short, stubby fingers have grown longer and thinned out. He has big boy hands now, instead of baby hands. And I couldn’t be happier! I bet you thought I would say, “My baby, he’s growing up too fast!” Nope, you won’t hear me say that. And it’s not because I’m tired of washing bottles or changing diapers; and it’s not because I’m ready to go back to work (am I?). It’s not because I don’t enjoy the newborn or toddler phase, because I do. Yet, I am more than thrilled to see him growing up. Each milestone achieved, each pound gained…means Jack is on his way to being healthier, stronger and less fragile.

First Year Memory: Jack with the NG and on O2 in his younger, more fragile days (6 months old).

I look at his “old” photos and videos and they make me smile, but I don’t yearn for those newborn days, when Jack was at his most fragile and unhealthy. His newborn stage consisted of one tube feeding to the next…one breathing treatment to the next…one doctor, specialist, or therapy appointment to the next…(you get my drift?). While Jack was extremely pleasant and happy during this phase (and still is), he was also at risk for severe illness and hospital stays. During that first year, I definitely wished time would move faster, so Jack could move toward health. Those days were some of those scariest of our lives. His second year was not as consumed by meds and tube feedings, but still held the anxiety of illness and germs and delays in development. The problem with prematurity is that once you hear the possible impacts (cognitive and developmental delays, lung disease, feeding issues, etc), you can’t “unhear” them. So in the second year, as Jack achieved many milestones on his own timeline, I was more than anxious to see him achieve the next milestone on the “list.” And each time he does, it’s one less thing to fear that he may not do. I know that all parents worry; I’m just looking forward to the day when my worries are “typical” parenting worries and not prematurity ones.

Second Year Memory: Jack standing up on his own, from the floor, at 17 months.

Believe me, I’m not wishing away his younger days. We are having a good time and enjoy every moment with our little guy. But I’m not wishing his childhood to stay longer than necessary either. I don’t want time to stand still at this young, and somewhat still fragile, stage. As I watch in awe as Jack grows and develops, I slowly chip away at the anxiety concerning the illness and impacts of prematurity that have taken over my heart and mind since his early arrival. The more time that passes, the more my anxiety lessens (or at least transitions to more typical concerns). There are times when I feel like I am living in the shadow of prematurity, as a mother…yet, I do feel as though Jack is not. I know he was born early and his development was interrupted and restarted in a not-so natural environment. He does NOT. This boy can and will do many great things. We don’t limit him based on what I think may or may not happen, because of the things we know about prematurity. But like I mentioned last week, I have lived in fear for a long time and am still having trouble letting it go. It’s just so hard to change perspective, when the only parenting experience I have started with a discussion about survival rates. So no, I don’t want time to stand still for Jack. But, maybe it’s his momma that needs a little more time. And perhaps I should give Jack more credit for his strength during these first years. Perhaps its his momma who is the fragile one.

Friday, March 1, 2013

Flashback Friday: Big J...little j...what begins with J?

“You're never too old, too wacky, too wild, to pick up a book and read to a child.” - Dr. Seuss

Tomorrow, March 2, is Dr. Seuss's birthday! In our house, we celebrate all things Suess. (Before I was Jack's mom, I was an elementary librarian.) Even before I was pregnant with Jack, I bought just one baby item...a crib sheet covered in Seuss characters (which translated into an awesome Seussical bedroom for our little boy.) Jack has always had a love of Suess (like his mama); probably because I started reading Seuss books to him in the NICU! A few of his favorites: Dr. Seuss's ABC, Ten Apples Up On Top, There's a Wocket in my Pocket, Mr. Brown Can Moo. My friends and family threw me a Seussian baby shower, a few weeks after Jack's early arrival. We even had a Seussical first birthday party celebration for Jack. I'm not sure how we will celebrate tomorrow...maybe some green eggs and a few Seuss read-alouds? Here's a little flashback of all things Seuss in our family...in pictures. (I figured the last post was a little "heavy" and needed something a little more fun today!)