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!

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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!

Day 8

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Keep in mind that things change with the boys on a daily, if not hourly basis.  But here is where we are at this moment!  It seems since day 3 the boys have switched roles.  Where as before Griffin was the one dealing with problems and Carter was just hanging out – now Carter is the one requiring more monitoring while Griffin is holding his own.  I have a feeling this is a glimpse into how things will go for a while!  Our biggest success thus far is that both boys have passed two head ultrasounds with no signs of brain bleeds. This is the biggest risk at this stage in their lives so we were happy to hear that so far it is looking good.  They will repeat the ultrasounds later this week, each day their chances of bleeds decreases so the next ultrasound will be a big deal.

Griffin

He has been on and off the bilirubin lights this past week.  Yesterday he started feeds (1 cc every 3 hours) and his stomach seems to be handling them.  A few days ago he was moved off the oscillator and onto a nasal cannula until they felt it was too much stress for him and put him back onto a regular ventilator.  He is on very low levels of oxygen and his tests show this is the perfect recipe at this time for Griffin. The word most used to describe Griffin’s status is “stable” which is music to our ears!

Carter

He also started feed this week but this was stopped when he has some issues with his belly.  This is pretty normal for a baby of his size.  Eating is not something they should be doing at this stage of life but they need to get them nutrition and to get all the body systems up and working.  After a few days rest they started feeds again today and they seem to be working.  Carter is also having some lung issues and was put on a jet machine when they found some issues with the levels of CO2 expelled and slightly expanded lungs.  This machine gives Carter’s lungs a gentle shake.  And other than pulling out his tube this morning (he is a very active little guys) and needing that replaced, the jet machine seems to fixing his issues.   Again, for the most part, Carter’s days and nights can be described as “uneventful” and “stable” great words when dealing with micropreemies in the NICU.

The rest of the family

We are also “stable” and have organized a pretty “uneventful” life!  We are settling into a routine and the girls are showing their resiliency and flexibility everyday.  Tim amazes me with his selflessness, as he picks up the slack and fills the gaps wherever needed.  I am feeling better everyday, and hope to be pain med free in the very near future.  I’m tired – one of the things nobody talks about is what it is like to have newborns in the hospital when you are breastfeeding.  It is known that preemies on breastmilk do better than preemies on formula and I love the idea of being able to feed them.  However, this means that I need to pump every 3 hours.  This includes through the nights.  It is a noisy reminder, when my alarm blares at 3 am, that the boys are in  the hospital.  I am keeping newborn hours, without any newborns to hold.  This may be one of the toughest things.  But I know it is completely worth it! 

So keep the prayers coming – they are working!!!

Home again, home again!

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Well…on to phase two of the boys’ lives.  The NICU phase.  Yesterday I came home, and am no longer an elevator ride away from them.  I must say, compared to the last time I did this with Addison, I am much more prepared mentally for what lies ahead.  I didn’t leave the hospital with a severe sense of anxiety this time.  I was able to fall asleep without obsessing for hours about what the boys were going through in the NICU.  This time I am at peace with nurses and staff looking after them and I am convinced that they can do a lot more for Griffin and Carter at this point than I can.  Maybe because I am older (and wiser of course!), maybe it is because the boys’ needs are much greater than Addison’s ever were, or maybe it is because this is not my first time at the rodeo but I am okay with letting go of control (at least for now)!

I was beyond excited to get home to the girls!  Letting go of the control over my house and the lives of Kennedy and Addison was a lot harder to do!  I came home to a festive sign made by Jaime and the girls, Kennedy cleaning the toy room, and a bare-bottomed, but freshly bathed, Addison!  Kennedy kept repeating “I’m so excited you are home!” and wouldn’t leave my side for quite some time.  Addie was too busy being her “two-year old self” to give me a hug when I walked in the door but instead ran and grabbed her Barbie and said “You can hug Barbie” then ran off again to play!  So glad she adjusted in my absence!! 

Of course, if I am being completely honest (and that is my intention with this blog on the off-chance that someone in a similar situation comes across my ramblings) I do miss the rest time that I was able to have in hospital.  That and the scheduled pain medicine!  It is very easy in a situation like this to forget about the fact I just had surgery and have incisions in multiple layers of my body.  There is just so many other things I want to do than rest and remember pain meds!  However, at times my body makes sure that I remember and I do relax.   I’m sure in a week or two I will be back to normal.  My house can get cleaned then!

I heard a man on NPR repeat his grandfather’s favorite saying.  It struck a cord with me and has now been added to my list of personal mantras.  He said;

“Life is a process of adjustment.” 

So here we go – time for our family to adjust to our new “normal”!