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.

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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!

What day is it?

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Today in a casual conversation with the bank teller I told him it was Friday.  He looked at me for a moment and said, “Is it?  I think its Thursday.”  It took me a moment to agree with him.  He continued to work as I stood there, kind of in a daze.  It seemed so strange to me to be standing at the bank, not sure what day it was.  I remember this feeling from when Addison was in the NICU.  I remember walking through Walmart with my MP3 player on looking around me thinking how foriegn the world around me seemed.  Life with a child in the NICU, or hospital at all I assume, is like living in an alternate universe.  The world that was so normal before suddenly is strange, and the world of the hospital, you knew nothing about before your child needed medical care seems perfectly natural. 

Luckily, the other part of the equation I remember from Addison is how quickly you transition back into the world of bank tellers and checkout lines when your child comes home.  You adjust quickly because now you have a newborn at home who needs to also assimilate into the “normal” world.  The NICU experience has changed you forever but the details fade in a way. 

Other than not knowing the day of the week we are slowly adjusting to life with children in the hospital.  My aunt has been staying with us (since I can’t drive yet and still need lots of rest to recover from the surgery) and we have developed a nice routine of time at home, running errands and visiting the boys.  Our nanny still comes to take care of Addie while I am with the boys and Tim stops at the hospital on the way home from school.  The evenings we try to keep normal for the girls.  It isn’t so hard, juggling our time, and we all seem to adjusting – for the most part. 

The boys continue hold their own.  Carter still has more respiratory issues than Griffin but we are told their issues are nothing outside of the norm for babies their size.  We were approached about enrolling them in a study to give them more  of a lung stimulating drug (surfractant) than a normal preemie would get and we can only hope that   A. both boys are getting the drug and not the placebo and B. that it works in opening their airways and getting them off the ventilators sooner.  Griffin has steadily increased on his feeds and is up to a whopping 3ccs as of this afternoon.  Carter is getting 2ccs of my milk and I am feeling fulfilled that I am able to help their development in some way. 

As always, only time will tell how they do and each day provides new conditions to understand.  We truly believe that our boys are strong and are tiny little fighters.  We also believe that your prayers and support is a great asset to them and our entire famiy as we navigate our way through the next few months.  So keep them coming!