reflections

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 page!  Every 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!

You know you’ve been in the NICU too long when…

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  1. Your son’s nurse knows you so well she asks you if you want her to hit your husband when he makes some sarcastic comment.
  2. The nurses know your oldest daughter’s gymnastics schedule.
  3. You receive mail there.
  4. The security guards in the hospital lobby know your name when you go to sign.
  5. You understand what the doctors are saying when talking to each other about a treatment plan.
  6. You no longer hear the constant beeping that is the soundtrack of the NICU!

It has almost been three months since our boys were born, and it is difficult to remember what it was like before I spent my days at their bedsides’.  I feel like it was forever ago when I was just getting the sense of what it was like to have babies in the NICU.  Now I can’t imagine what it will be like to have them at home.  Three months ago I would lay awake at night wondering what I was going to do to get through this time in the NICU.  Now I lay in bed wondering what I am going to do to get through the next few months with two newborns at home!  Three months ago I worried about brain bleeds, ventilator settings, heart problems and if I could touch them.  Today I worry about keeping up with the laundry of four kids, balancing my time between two newborns, a two and a half-year old and a kindergartener, having time to make dinner and if I will ever sleep again once the boys come home.  My head is spinning thinking of all the preparations that need to be made before the boys come home.  Three months ago all I wanted was to fast forward to the day that the Doctors would step up to my boys’ beds during rounds and say “Not much to report.  He is eating and growing.”  And now that time is here!  While the boys each have their hurdles to jump before being discharged we can see the light at the end of the tunnel.  Carter could be home in the next week and Griffin should only be a couple of weeks behind him.  True to form, Carter still has bad lungs and will come home with oxygen support (a whole new bag of stressors!), while Griffin is still having eating/digestion issues and will stay in the NICU until this is ironed out. 

In the end, the NICU hasn’t been that bad.  I wouldn’t want to do it again and I wouldn’t wish what we went through on anyone…but all in all, it wasn’t terrible – the staff there made it bearable  and I believe my boys will come out on top when all said and done.  I can definitely say that I am a better person having been there and having gone through this experience, but I am happy to see our NICU time coming to a close in the next month.  Only time will tell what the lasting results will be given what we have been through since Ocotober 8th.  Just think, three months from now my post will be all about my lack of sleep, the number of diapers I changed and how many times Addie cried because I couldn’t do something for her until I was done feeding one of the boys.  Ahh, won’t that be wonderful to have such simple problems!