and now here is your moment of Dan

Oh to be as flexible as our young Tae Kwon Daniel! Even his master teacher is impressed with how he can just fold himself completely flat to the ground as if he is hinged in some way. One of the hazards of prematurity finally pays off.

fight for preemies

Daniel Quinn- age 7 born at 24 weeks gestation weighing 1lb 60z

We need to fight ― because babies shouldn’t have to.

November 17 is dedicated to raising awareness of the crisis of premature birth. The March of Dimes invites bloggers like you to get involved.

• Learn about premature birth at marchofdimes.com/fightforpreemies
• Put a badge on your blog during November, Prematurity Awareness Month®
• On November 17, blog for a baby you love and to help others

the question that can’t be answered

I have a confession to make. I twitter at work. No, I don’t necessarily tweet about work. I just tweet or twitter away during my down time in between direct patient care. It’s a nice distraction to keep me awake in the wee small hours of the morning when it seems like 7 AM will never come. It stimulates my mind. It makes me smile when I’m having a tough night at work.  I meet the nicest people that way sometimes. To those of you who put up with my middle of the night tweets, I thank you. Sometimes while twittering away, I will receive a random message not unlike this:

“any idea of the stats on survival of 26-wker??“

It’s an innocent enough kind of question. Usually it is someone who is worried about a friend of a friend and just once some reassurances that everything will be okay. I get it. I am the same way when I hear that a friend is dilating 15 weeks early or another friend’s son and wife are delivering their first child ten weeks early. Intellectually we all know it’s too soon but we have all heard stories of 2 pound miracles who are now over 6 feet tall and playing football. We’ve all seen our share of “preemie” babies born on television dramas who come out looking like chubby, three month olds with loud, lusty wails. We want theese kind of stories for our friends, for our families, for ourselves. Who doesn’t?

It’s hard for me to answer these questions to the average lay person, the average person who has never held a 1lb baby in their hand or have literally breathed for a baby 15 weeks too early to the birthday party. It’s hard for me to look parents, family and friends in the eye and tell them that the frail, almost bird-like baby with translucent skin showing practically all their veins nested in the isolette will grow into the perfect, athletic, valedictorian at their high school graduation. I can’t tell them that. I won’t tell them that because I have no clue. I have no clue if the baby will make it through the next three days, the next year or will ever be the whatever they imagine that baby will grow up to be.

The week that my son was born sixteen weeks too soon and admitted into the NICU where I worked there were two other baby boys also born sixteen weeks too soon. They all were oh so small. Much too small to breathe on their own. Much too small to nurse at their mothers’ breasts or take a bottle. Much too small to keep their own bodies warm. They were much too small to survive. But they all survived their birth, the first of many, many, many hurdles that they would have to jump over. They all were so similar in their condition, their treatments and their initial prognosis. A couple weeks later, of the three 24 weekers, Daniel was the sickest, the most gravely ill. Looking at the three of them through a clinical eye I could have easily predicted that my little man would have the worst outcome. He was the smallest, the frailest. Days blurred into weeks and then a couple of months and suddenly the smallest, the weakest, the sickest was thriving, growing and the strongest of the three. Time went on and soon Daniel was discharged home while one went on to another hospital for even more intensive care where he would wait for a new liver that never came. He never saw his first birthday. The other grew chubby and delightfully playful but could not breathe on his own. Dependent on a ventilator, he would go to a step-down rehab center for long term pediatric patients where he stayed until just past his fourth birthday. Three babies. Same sex. Born at the same gestation. Not one neonatal expert could have predicted the outcome of any of them. Not one neonatal professional would predict.

The fact of the matter is even if a preemie, a micro-preemie survives the first 72 hours, the first week, the NICU stay, no one can predict or imagine what that child’s outcome will be. A baby born 14 to 16 weeks early has pretty much a 50-75% chance of survival these days thanks to advances in neonatal care and practice but that does not guarantee a happily ever after for any of them. These babies are still so vulnerable during their first 2 years of life and, sadly, some do not survive after going home. Even after that there is a high risk of lifelong disabilities (cerebral palsy, mental retardation, blindness, deafness, autism to name just a few) that can be completely debilitating. Beat those odds and most micropreemies still face learning challenges as well as physical, sometimes chronically painful, challenges.

Not a day goes by where I don’t find myself looking at my son and marvel over how much he has overcome, how rare and fortunate he is as a former 24 weeker and over the many, many more hurdles he must overcome or somehow get around as he continues to grow. He, with the help, love and support of his team of medical professionals, educators, his family, his friends, his fans has come so far, so very far. I celebrate it. I give thanks for it everyday. But then I look down the road and know there is so much more he must do.I’m confident in one thing of my son’s journey. I am confident that no matter how far he might come in his own climb, he will not be alone. That is all that I can promise and guarantee for him. Well, I can also promise and guarantee that he will have the most amazing cheering section. He always has. He always will. God only knows what accomplishments of Daniel’s that we will be cheering for.

So, you want me to tell you that the 24-28 weeker you know will be okay? I can’t. I won’t. It’s a question that can’t be answered until that baby reaches the end of their life’s journey no matter how short or how long and winding it might be.

Today I am blogging for Prematurity Awareness.

Are you a parent of a preemie? Are you a preemie? Do you know and love a preemie? I challenge you join in and share, blog today to raise the awareness of premature birth.

Tae Kwon Daniel

When you are seven and the size of your average 4-5 year old it can be a challenge. When you still struggle with some of the physical after affects of spending the first 132 days of your life in the hospital while you finished doing the work of four months of growing and developing that should have been completed inside the womb it can be a challenge. We all know that Daniel is challenged. But we all know that Daniel faces and works at each of the challenges that comes his way not unlike the Little Engine That Could.

Daniel is at an age where he loves being active. He loves to run and jump and play with his buddies on the playground at school or with his best friend across the street. Still he has his frustrations and his barriers. He wants to play organized sports but his physical challenges are augmented with some mental as well. Although we have yet to have a definitive diagnosis of ADHD along with his global delays, it is more than clear to us that Daniel has marked attention issues. No, he is not the bouncing off the walls type of ADHD kid but he is very easily distracted and often can’t refocus even when we attempt to redirect his focus. Most of his care and education team have suggested martial arts  as a great organized sport for him as it seems to help many kids  with attention deficit issues. Taking that into consideration, we decided the time was right to explore martial arts for our little man and see if this is the right fit for him.

Today he earned his white belt. I think that it quite possibly might be the right fit for him. He may be small but he still remains oh so mighty.

perception

Daniel age 9 weeks/31 weeks adjusted age

“When I was born I was teeny-tiny, tiny. I was REALLY tiny. Even tinier than Baby Hazel was. I lived in the hospital. My mom says that even though I was soo very tiny, I was the strongest baby ever. And now I am not tiny at all. I am big!”

I am quite impressed with Daniel’s perception of his beginnings. As he recalls and shares with others his perception of the beginning of his life it is easy to see how impressed he is with it. Although I do believe that sick, premature infants do have memory of the NICU experience on a subconscious and primitive level, I doubt he can recall how tiny yet how strong he was 7½ years ago. But it is clear that he is beginning to understand how scary and amazing it all was.

And again I find myself in awe over just how amazing this child of mine is.

banished doubts

So you know those decisions you make where deep in the dark of the night you find yourself perhaps having second thoughts? I’d be lying if I didn’t admit to such thoughts about our decision to hold Daniel back to repeat the first grade. Let’s just say as Daniel tells us it is time to do his homework and sits down and confidently goes for it, those thoughts are banished. Just like every other developmental milestone he has met it, I swear I can see the light bulb turn on just above his beautiful head.

True, the school year has just begun but to see the eagerness he has as he works on his math (naturally), his writing, his spelling and his reading I know we made the right choice to hold him back and repeat first grade again. He is a confident, eager learner rather than distracted and just a little bit frustrated and demoralized. Let’s face it, he is smart enough to know he wasn’t getting this last year. But this academic year, so far, he does get it.

Trust me. This is one decision which I have no dark of the night waking up in a cold sweat regrets, no second thoughts, no doubts.

mindfully sad

News circulating tonight in the mom-blogsphere and twitter-land is sad. Beautiful, miraculous Maddie Spohr passed away suddenly today. Following her family’s account over at The Spohrs Are Multiplying I couldn’t help but be enchanted with her amazing eyes (second only to my grand daughter, Hazel’s) and her delightful smile. I identified completely with the trials, tribulations and amazing blessings of life with their preemie because we are living out own life with an amazing preemie. Tonight my heart is sad, so very sad for her family. Please stop by their blog and discover Maddie, if you haven’t already and definitely find it in your heart to make a donation in her memory to the March of Dimes. Not a day goes by where most families of preemies like Maddie and Daniel are reminded just how miraculous they are and how they still are so vulnerable even long after they leave the NICU to “live happily ever after”. Perhaps someday happily ever after will be a reality for micro-preemies and preemies like these rather than a wish, a prayer or a miracle.

he’ll likely be really mad at me for this…

…in say about five or ten years. I’ll deal with it then.

Potty training Daniel has been a long, arduous journey. I had no doubt that it would be after all he is a boy and I have heard way too many stories from moms of boys. They didn’t worry me too much though. I just knew it might be more challenging with him. Then there was the whole ex 24 weeker with developmental delays and SPD issues thing. Then I definitely came to terms with the truth that it would be challenging. I was okay with that and was prepared.

Actually I had no clue…

Some days it was challenging, some days it was frustrating, some days were triumphant and some days we all cried. Eventually he got it…sort of, kind of. He kept himself dry and answered his nature call all on his own. But that pooping in the potty thing, well, that proved to be an even bigger challenge. I got it, really. I mean one of his sisters had a hard time accomplishing that milestone too. It was a scary thing it seemed for her andf it seemed to be the same for him too.

We tried reasoning.

Rewards.

Consequences.

Begging.

Pleading.

More promises.

More consequences.

Even a little peer pressure.

And at one point we pretty much gave up.

It could have been worse. I mean, I have dealt with impaction back in nursing school. Thank goodness he was regular because I just don’t think I would have the strength for that.

Then finally, like pretty much everything else in his life, it all clicked and it clicked according to HIS timetable, not ours.

He poops in the potty all on his own all the time now and he is quite proud of that fact, as he should be. “Take a picture, Mom!”, he quipped tonight. I compromised and took a picture of him showing us all where poop should go…in the potty!

Buh-bye pull-ups day and night forever!

you’re still here

You were there seven years ago. You were there for him when he scarcely weighed a pound. Seven years ago today you were covering him and protecting him as he recovered from open heart surgery. He was so tiny you practically covered his entire body. You, with another beanie-baby lion provided boundaries in his new womb, keeping him from pulling the tubes and wires that sustained him. You stayed with him throughout his entire stay in the NICU. You were there. You were always there.

Seven years later, he found you this morning while picking out his clothes for the day. You were there in his top dresser drawer under his socks. There you were, like you always are. He brought you to me telling me that he found his lion, his friend, telling me that you were still here.

You are.

You’re still here watching him grow.

January 21st’s happy ending

Like so many bloggers/photographers/scrapbook experts and addicts out there, I am actively participating in Project 365, a photo each day in my life. I already take a number of pictures everyday but the challenge is to select just one that depicts life around me this year. Today’s picture certainly isn’t worthy of great artistic or creative acclaim but there clearly was no other choice.

Today was Daniel’s 7 year well child exam. He weighed in at 35 pounds, yes THIRTY-FIVE POUNDS! He stands 3 feet 5 inches tall as well. THREE-FEET-FIVE-INCHES!! He gained 5 pounds and grew 2 inches in just 4 months and has outgrown the boys size 4 jeans I bought him at the beginning of the school year. My little man is growing and forgive my over the top reaction, but I am so freaking excited and thrilled. Now don’t come back here and rain on my parade sharing how this 7 year old is 60 pounds or 4 feet 11 inches tall or that 5 year old is twice Daniel’s size. I don’t really care. Seriously, I am so thrilled with his growth spurt…yes, for a kid like Daniel, this is a growth spurt.

But that’s not all. We’re not through.

The pediatrician did the thorough head to toe and reviewed Daniel’s health history this past year. With the exception of evaluating a mole on his back this past Fall, she hasn’t seen him all year and why is that, she asked? I shrug and tell her hasn’t been sick. He hasn’t. His nebulizer sits unused in the pantry next to the breathing meds he has had no need for in over 6 months. There have been no colds, flus, nothing. Dr. B shakes Daniel’s hand and tells him he is an amazing, miracle man. Daniel replies with his usual affirmative “Yup”.

Doc and I talk a little more about his growth and development and any concerns I might have. I still have some but all in all I am more than pleased. My boy is happy and healthy and that is a good thing. We end the visit talking a little NICU-related shop that ends with Dr. B smiling broadly, giving Daniel’s hair a playful rough and declaring, “Don’t you just love a happy ending?”

I grin back at the two of them and agree, “I do!”

Of course Dr. B and I both know Daniel has miles and miles to go before his happy ending is fully realized. His challenges in learning and growing still remain. Still to take a child who started life out with only around a 50% chance of survival, a 38% chance of profound neurodevelopmental impairment and around a 22% chance of moderate to severe neurodevelopmental impairment, he is pretty darn amazing…really! Given the fact that there was no way to determine his eventual outcome 7 years ago I will glady accept the challenges he does live with today and I will continue to face them head on with him.

Dear Daniel, you are truly a fortunate son. I celebrate you. I celebrate all the talented, fearless caregivers you have had throughout the years. I celebrate the multitude of people who have prayed for you, cheered you on and celebrated you. Today is a happy ending kind of day and I celebrate that too. Tomorrow, we will be working on your homework and likely struggling with it too. Or perhaps we will be fighting with food again. But as you have proven thus far, slow and steady does win the race.