NICU emotions

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!

There is a reason for everything!

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Tomorrow will be one month for the boys!  It is strange, but it feels like it hasn’t been that long.  I say its strange because when Addison’s stay was only one month-long and I remember thinking it felt like a lifetime.  I am sure there are a few reasons for this, the most obvious being that I know that my boys clearly aren’t close to ready to coming home.  I just hope they are home around my due date – January 20th!  We know we are in this round of the NICU for the long haul. 

My sense of urgency isn’t the only difference with our NICU stay this time around.  When Addison was born at 32 weeks and required a 30 day NICU stay I was terrified.  Nearly paralyzed with fear.  Every hiccup, change in stats, behavior, etc. was cause for alarm.  Not to mention I was completely overwhelmed by the entire experience – I didn’t talk to many people, waited for the doctors to approach me, took direction and updates at face value as I quietly meandered through the process.  I didn’t feel bold or confident in the whole atmosphere – it was too scary.  Not this time!  The NICU isn’t nearly as scary as I thought it was two years ago.  Which is funny, because the boys have a much scarier ride than Addison did.  I know all of the boys’ day doctors and nurses by name, I see them in the main lobby and we talk.  If I have a question, I walk out to their desk and ask it.  While we love most of the nurses, some of them rub us the wrong way and when we feel the need, we voice our opinion. 

Most impressively, I am not afraid.  Don’t let me mislead you, there are things that I am very afraid of.  Illnesses, issues, complications… However, I have a handle on the day-to-day.  I know each one matters and to celebrate just that.  With Addison I think one of the reasons I was so afraid is that everyday I was desperately trying to get to the “normal” part of having a newborn.  So each day that kept me from that was filled with fear that those normal days would never come.  With the boys, I feel abundantly patient and feel no need to rush their delevelopment and milestones, I am content to be happy with each and every small success.  Take today for example, I celebrated being able to put lotion on Carter.  Giving him a little massage made my day.  I celebrated knowing what to do as I watched Griffin’s heart rate drop, and I celebrated being able to help him pull out of it.  On Saturday, I celebrated holding Griffin in my two hands inches above his bed so his nurse could change his bedding.  There are just so many things to celebrate.  Even on days like today, when Griffin is having a hard time keeping his heart rate up, his food in his belly and had to go back on the ventilator to support his immature lungs.  Because I know tomorrow things will be different.  So I take things day by day, it is what it is and it is clearly NOT in my control but in God’s hands (thankfully – for I know I am not equipped!)

Looking back at the blog I kept for Addison, there are very few entries during her time in the NICU.  That is because I was so overwhelmed by what was happening I couldn’t even find the words.  I never did my own research online of any of her conditions, afraid of what I might find.  This time around I have taken ownership of our situation.  I participate in a web community of parents of preemies.  I read discussions, post my questions and encourage other parents going through similar things.  It gives me strength and hope for our boys.  And of course, I blog about nearly everything.  This blog has been one of my biggest sources of therapy. 

In 2009 when we went through our first bout with the NICU we had faith that things happen for a reason.  But now, in 2011 that reason is glaringly obvious.  Without the relatively easy and short stay with one little girl in the NICU two years ago, I know we wouldn’t be half as prepared, secure, comfortable, knowledgeable..for our long and precarious stay with our two tiny boys now.

Angry/Scared/Joyful/Sad/Happy…

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Lately, when asked how I’m doing I am never quite sure which emotion to pick.  At any given moment I feel about 10 different emotions .  I know I have posted about this before, and I am sure it is becoming redundant – but man this is a lot to handle and it is testing every bit of strength that our family has.   And then perspective rolls in and I am once again in awe of what some families endure with such grace that it makes our struggle seem small. 

For this post I decided not to pick an emotion.  And since I am not standing face to face with someone waiting for a response but instead sitting comfortably on my couch with all the time in the world my answer to the question everyone asks is this…

So how am I feeling?

I am ANGRY because both of my boys have some pretty serious infections that they contracted from simply being in the hospital.  They have gone through a series of antibiotics and yet still, they test positive for staph epidermidis, pseudomonas and stenotrophomonas.  So now they each will have a spinal tap to rule out meningitis. 

That of course brings me to SCARED.  

I am JOYFUL because Griffin has pooped on his own many times since yesterday (he used to only poop when they gave him medicine).  I am also joyful today because Griffin is no longer on a ventilator so I got to change his diaper!!  This is the most interaction I have had with either boy since they were born.  I nearly teared up as I prepared to change him then laughed to myself as I realized that in a few months I will look back on this moment and think I was crazy for being so excited, as I change my 40th diaper for the day! 

I am SAD sometimes as I pack up the maternity clothes I will never wear, the nesting that I will never feel, the pregnancy that I never got to see till the “normal” end.  I have talked with other moms of preemies and it is such a funny thing how you mourn the shortened pregnancy.  I’ve caught myself a few times thinking about events I thought I would be attending as a quite round pregnant woman, and it makes me sad.  Which is ironic because when I was pregnant and thought of that same event and me being whale-like I dreaded it! 

I am HAPPY each time I walk into the boys’ room and see their little faces!  And I am just as HAPPY when I come home from the hospital to my busy house and my even busier two girls at home.  I am not sure I have hugged or kissed Kennedy and Addison as much in their lives as I have in the last three weeks.  They bring me happiness everyday!

I am OVERWHELMED sometimes as I drive home from the hospital alone.  Thinking about the daily report from the doctors, the changes the boys have made, and then all of the things I should be getting done at home.  Finding motivation for “real life” needs like dishes and dusting is quite difficult when you have kids in the hospital.  If I catch myself thinking in the long-term I have to stop myself immediately, the long-term is overwhelming – the short-term I can totally do.

I am RELIEVED each night as I lay down to fall asleep and think about my little fighters making it through another day.  I find myself taking a long slow breath and thanking God for giving us this day with our boys.  Knowing that each and every day is truly a gift that will hopefully bring us to a lifetime of days.

I am TIRED.  I think I could sleep for days and still be tired.  

I am HOPEFUL, in fact I am filled with hope.  I have so much hope that it overflows at times.  I have hope that in a year from now this time will only be a memory.  I have hope that my boys will have a full and happy life and will only be stronger for the way they started off in the world.  I have hope that our family will come out on top after all of this, that our finances, our needs, or emotional state will remain intact as we go through this difficult time.

And perhaps most of all I am GRATEFUL.  I can’t say enough how grateful I am for the friends and family that surround us.  We have been inundated with offers to help, food, support, prayers, kind words and love.  Each sentiment we receive strengthens us and reminds us once again how blessed we are to have all of you in our lives.  And we are so absolutely grateful for the nurses and doctors at Children’s Hospital.  It makes all the difference to be confident that everyone dealing with our boys are chasing the same goal.  What they do on a daily basis with our kids is amazing and we are so grateful for their talents and expertise. 

Ahhh…that feels better.  I am so glad I took the time to get that out!