A month in numbers

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115:  The number of days our family spent at Children’s hospital – from my admittance to Griffin’s discharge.

98: The number of days Carter spent in the NICU.

108: The number of days Griffin spent in the NICU.

44: The number of days Carter has been home.

33: The number of days Griffin has been home, the number of days we have had our entire family together!

19: The number of doctor’s appointments the boys have had since being home.

102: The number of times Griffin’s monitor has beeped

1: The number of times Griffin’s monitor has beeped when there was an actual problem – and this was the day before he came home!

5: The number of weeks the boys would be if they had been born on my due date.

20: The actual age of the boys in weeks.

7.03: Griffin’s weight!

8.03: Carter’s weight!

Kennedy's bedtime ritual...holding each of her brothers!

Countless: The number of diapers we have changed, bottles we have washed, hours we have spent holding the boys, and times we have been caught in a moment full of gratitude and amazement at all we have come through and how well we are doing!

It has been a very busy month, there were times when I could barely keep my eyes open, or formulate a sentence from the absolute exhaustion.  There have also been times when I have been angry and sick of dealing with all that we have been given to handle.  I have had my moments where I felt sorry for myself and overwhelmed with all that goes along with raising ex micro preemies.  But then I snap out of it – often afer a reassuring talk with Tim.  All in all, we feel exceedingly grateful for all that we have been given, even if it does mean worrying a little bit more!  I won’t sugar coat it, having two “newborns” at home with special needs, a two-year old who shows no fear and a five-year old who has stories to tell is a lot of work.  I am sometimes moody,  frequently looking disheveled and always tired!  But I have also never been happier, never felt more fulfilled as a mom, never had such an acute sense of appreciation for all of the wonderful and ordinary moments that happen in my day.

Griffin and Carter are doing so well I hate to write it out loud in fear of jinxing our good fortune!  Carter now only requires oxygen and monitors while sleeping, and after a very scary past couple of weeks his eyes are finally showing improvements and we are increasingly optimistic about his vision future.  He smiles when he sleeps, and continues to be a very content and calm little man.  Griffin is officially wire free as of Thursday and other than his reflux his issues seem to all be subsiding.  He is quite the  snuggler and has already learned how to manipulate his way into our arms, tonight he intentionally smiled at me, so wonderful.  I freely admit that they both have our family wrapped around their little fingers!

Addie, such a proud big sister!

We have another Lung Center appointment in a couple of weeks and hope that by then Carter’s lungs will have improved enough to get rid of the oxygen all together.  To say we are ready for the day when both of our boys are free from wires and tubes would be a colossal understatement!!

I do miss the NICU, as strange as that may sound.  The staff there had become so much a part of our daily lives and we owe them so much for all that they have done for us.  After the boys came home it was as if we lost our friends and support system.  I still keep in touch with a few people but it is still so odd not to see them everyday after they played such a major role in our family for so long.

It is because of the amazing treatment we received in the NICU that we have decided to make the March for Babies a major event for our family.  This year we have formed a team and will walk in honor of our three ex-preemies and to help to raise funds for treatment for future preemies.  What modern medicine can do to not only keep tiny little fighters like ours alive but help them to thrive is nothing short of amazing and our goal is to forever honor our journey by raising money for the March of Dimes.  If you would like to donate to our team, or better yet – join us on April 29th for the March for Babies visit our team pageEvery little bit helps, every walker counts!

What a great day it will be to walk with Griffin and Carter, in a walk to raise awareness and funds for premature births knowing that only six months earlier they weighed only 1.08 lbs and were fighting to survive.  Nothing short of a miracle!

Blame it on my glasses!

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Blame it on the rose-colored glasses I worked so hard to find over the past five months but life at home with two babies is not all that bad, in fact I love it!  The first time I held both of the boys at the same time in the NICU I remember breaking out in a sweat.  It was in that moment that the reality set in that we would have two babies at home some day.  And frankly, the thought of that made me a tad bit nervous.  One day as I rocked them, one of the doctors came in to chat and asked if I was okay, she said I seemed quieter than normal, more stressed.  I explained that since the boys were close to coming home my mind was overwhelmed with the planning and stress of what was to come.  I’m not too far removed from baby life, Addie is only two and a half, I remember the crying, sleepless nights, constant worry…I remembered what is in store for us – times two!  I couldn’t help but be overwhelmed with all that was to come with having Griffin and Carter home. 

And it turns out, I worried for nothing!  Sure, we change about 20 diapers a day, make 20 bottles, I sit down to breastfeed what seems like every hour, untwist Carter’s oxygen tubing more times than we can count, wash binkies, blankets, bibs and baby clothes non stop but we have yet to be overwhelmed.  Tim and I have created a routine for ourselves and the boys, the girls and the dogs all seem to be settling into it nicely.  Griffin cries a lot due to the pain caused by his severe reflux, Carter is more laid back but is constantly moving, thus constantly kicking his blankets off or losing his binkie.  This has become the background music of our home, these sounds and the loud rumble of the oxygen concentrator and beeping monitors!   

My brother and his wife had a baby last week.  I was overjoyed to hear of his birth, and more than excited to hear every detail I could soak up about him.  My love for my new nephew and pride for my brother was instantaneous.  And it wasn’t until I felt that instant joy at hearing the news of Corbin’s arrival did I realize how much I longed for that feeling.  I have four wonderful kids, I wouldn’t trade them or their journey’s into our family for anything but I was jipped from feeling the instant joy when three of my four children were born.  Having a preemie baby changes that phone call.  When Kennedy was born we called everyone to announce her arrival with happy tears in our eyes and a huge amount of pride.  When Addie, Griffin and Carter were born we made the same phone calls but with concern in our voice and a worried voice on the other end of the line.   Just a realization I had, but not a complaint.  IT is my firm belief that everything happens the way that it should.  And in no way does my experience with my preemie kids take away from my joy for those with full term healthy babies.  I hope nobody confuses my reflections for whining, or a cry for advice.  It is simply a reflection.

There hasn’t been a week since Carter came home four weeks ago where we didn’t have at least one specialist appointment to attend for one, or both, of the boys.  The medical binder I carry wherever I go with all of their information is growing bigger by the day.  Knowing all of their past issues, present concerns, medications and needs gets a bit exhausting.  Tomorrow we go back to the hospital to have blood drawn, Wednesday to the lung center to see if Carter can handle being on O2 only at night, Friday the eye center where they are closely watching Carter’s slow healing eyes.  Next week the pediatrician, eye center again and cardiologist, I believe, and the week after that the hearing clinic.  It is tiring, and makes me long for the days when the boys’ lives aren’t filled with doctors appointments. 

But then I spend the afternoon snuggling with both of them on my chest and Addie curled up next to me and I forget the appointments and special needs and simply enjoy being a mom.   Because the reality is that I would go to a different doctor everyday if it meant that I could be Griffin and Carter’s mom.  They are wonderful.  Carter is laid back – he is a content baby, happy to just to be in the mix of the family action.  Like so many months ago when Carter needed extra sedation to stay still he continues to be a mover.  Constantly picking his head up, kicking and waving his arms.  I love to watch him move, the way he examines his hands and eagerly sucks his fingers.  Griffin is a snuggler, he loves to be held and shimmies himself into you for his long naps.  He has the best looks and when he is wide away looks at me in a way that puts a huge grin on my face.  His face is just perfect!  The girls are so in love with both of them.  Addie is always asking to hold “her baby”, and she is amazing at throwing away diapers!  Kennedy of course is over the moon about being a big sister.  She is ever vigilant about Carter’s nasal cannula placement and hand sanitizer.  One of my favorite things to do is watch her snuggle with her brothers.  She is so gentle and loving. 

So I will continue to wear my rose-colored glasses because, while sometimes it is hard, right now…I love my life!