“On their 90 day of life…”

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This is how the Doctors start their rounds.  With the day of life.  I like it.  It segments things for me and makes me take a quick stock in all of their days, the good, the bad, the great and the awful.  If they were to say, “Three months” I think it would feel longer than 90 days, as if it were a huge chunk of time, not 90 individual days.  Not too sure why, but to me 90 days seems less than three months.  Three months in a hospital seems too long.

Carter’s 89th day of life wasn’t his best.  After watching his eye development very closely the pediatric ophthalmologist decided he required surgery to correct his retinopathy.  Retinopathy of prematurity (ROP) is pretty common in babies born so early and we weren’t surprised the first time we learned that Carter had stage 3 and Griffin stage 2 ROP.  When the boys were born their blood vessels in their eyes were only 33% developed.  They continued to grow around the eye, however things like Oxygen and general life outside the womb stunts their growth.   The retina continues to grow even though it doesn’t have any blood vessels to make it functional.  This causes the retina to send out a harmful chemical into the eye telling it to grow vessels.  Resulting in abnormal vessel growth that if left untreated would grow into the eye instead of around it and cause blindness.  So, if they think the ROP is getting worse and not better they perform laser eye surgery to get rid of the chemical-shooting, non-functioning retina – freeing up space for normal vessels to grow.  Carter will never have the range of peripheral vision like you and I but he won’t know since he never had it to begin with.  Both boys will require glasses, but we won’t know at what age and what strength until they get older.  So the eye center will be one of our frequent stops upon discharge as we transfer over to raising former preemies.  Carter’s eyes were what was keeping him in the NICU and now that they are taken care of we hope to have him home soon.  My main concern is that he needed to be put on a ventilator for the three-hour surgery.  Two days later he is still recovering from the sedation, and slowly waking up to begin breathing on his own again.  It was hard to see, of course – nobody wants their child to go through a surgery, but I’m glad we extended his stay in the NICU so he could have it there, where people know him and we trust the staff.  But it was a set back, and these wear on us after 90 days in the NICU.

Griffin’s 86th day of life wasn’t his best.  He has always been a baby that drops his heart rate and doesn’t always eat well, caused by severe reflux,  but early last week Tim and Griffin’s nurse noticed a change for the worse.  Thanks to our nurse who knew our boys they quickly diagnosed him with another UTI and started antibiotics.  So it was back in an isolette, and an IV in his head for antibiotics.  He is on the upswing now but they are thinking he may have something called uterine reflux.  He is unable to completely empty his bladder so it will continue to get backed up and grow bacteria.  Again, not too uncommon for preemies.  When he finishes his course of antibiotics they will do another test to check for reflux then form a plan of action from there.  This could be simply watching him closely as he grows, daily antibiotics or worst case scenario corrective surgery.

But on their 90th day of life the boys are continuing to grow and mature!  Carter is nearing 6 pounds and is visibly bigger than his older brother who hasn’t gained much weight during his latest sickness.  After three weeks of solid gains for both boys it is the minor set backs at the end of our NICU stay that are hard to take.  It is that rollercoaster analogy coming back to us.  The cars can’t keep climbing the track for the whole ride.  At some point they have to come down.

Hopefully, Carter’s 93rd day of life will be the day he comes home.  But I will celebrate that on Monday, if it happens.  Griffin will have to wait until his 100 + day until he can consider coming home.  But if I keep thinking of it in terms of days, not weeks, I know we can make it.

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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!

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!