updates

Picture Update

Standard

Let me give you a mental image:  This morning Tim left late for work because he wanted to get the girls’ breakfast and feed the dogs so I could sleep in a little (until 7:35 a.m.).  He knew that my baby (we switch boys each night to be fair) had been up since 4:50 a.m. while his had slept until 7!  Once he left I got Kennedy in the shower, made myself toast and the all important cup of coffee.  My morning “rush hour” as I call it ended with my breastfeeding both boys simultaneously while Kennedy sat in front of me reading her homework so I could comb her hair.  That was until my alarm went off blaring “I like to move it, move it…”  through out our home telling Kennedy it was time to get her shoes and jacket on.  She had one shoe securely fastened when her bus pulled up – seven minutes early!  Still breastfeeding, I threw her incomplete homework in her backpack before she slung it around her shoulders.  I shouted my “I love yous” and told her to zip up her coat and put her hood up over her sopping wet hair as she ran for her bus.  Not my best parenting but at least she was clean and going to school, right?!  Ten minutes later I finished breastfeeding and burping the boys, and settled into the couch to snuggle with the boys and Addie to watch Super Why!  Phew!

Another “rush hour” down, and I didn’t even mention my two barking dogs!  So it is clear why I haven’t had the time I would like to write on my blog.  I really want to – but my hours just slip past me and another day goes by without a post.  That is why I thought I would do a post of pictures.  That I can fit into my day – so here you go!  Here are some pictures of our family from the past couple months.  Some are from my phone, so the quality isn’t great but I don’t always have the hands free to grab my big camera.

Angry/Scared/Joyful/Sad/Happy…

Standard

This slideshow requires JavaScript.

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?

Standard

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 3, treading softly

Standard

Griffin and Carter are doing well.  As well as can be expected for two boys born 15 weeks early. 

I probably won’t go into details with my updates, because the constant status changes are overwhelming for me, and I am here to witness them.  But here is where we are right now…

Both boys: being so little and young there are some issues that they each have that goes for any baby this size.  Our biggest worry is brain bleeds.  Since their little heads are so fragile they are in danger of brian injury.  Today they each had a head ultrasound to check for bleeding and came out looking good.  Phew!  They will repeat the test in a week to check again.  If they come out on top for that test the chances of brain bleeding decreases.  They are both have tubs coming out of their umbilical cords.  These are for medicines, transfusions and such.  They receive antibiotics to ward off any infections they may have.  They are given a medicine to help with lung and heart development.  They are both on ventilators to help their tiny lungs.  They are on feeding tubes which will be the case for months as babies don’t develop the ability to suck and swallow until around 32 weeks (Thanksgiving time).  Their skin is really fragile so they are resting in about an 80% humidity incubators, to protect them.  This percentage will hopefully decrease by 5% everyday until they can handle natural air.  They are under blue lights to help with liver function, and this requires protective eye patches.  All of these things seem to be treated as though they were expected by the experts from babies at 25 weeks.

Griffin:  He had a rough day 2.  He was moved up to an oscilator, which is a ventilator that gives tiny fast shakes to the baby’s lungs to help open them up.  It was  a tough transition for Griffin and he was not happy with it – but he has since relaxed and adjusted to his new movements.  He has had a few other issues here and there and is being tended to by his own nurse (usually each nurse has two babies).  She watches him and adjusts as needed.  Last night his nurse referred to him as a “one night stand” saying that he definitely knew what he wanted and let it be known.  I think she was trying to say he was high maintenance!  Surprise, surprise – the one that looks like Tim is already having girl trouble 🙂

Carter: He has had an easier few days than his big brother.  He has to be put on sedation every once in a while because he is a mover and a shaker.  Every time you look at him he is stretching, adjusting, flexing.  While this is a good sign that he has a lot of fight and energy in him it is not the best way to be for a baby with wires everywhere!  Tonight Carter was put on the oscillator like Griffin.  He too needed the extra support for his lungs.  This is all in the realm of norm we are told but it is not easy to watch these little guys shake so fast, it can’t be comfortable.

I touched them each once.  But refrain from doing so in general.  Whenever they are touched they jump a little and the last thing I want to be is the cause for an IV to come out.  The nurses and doctors try not to touch them often either and practice what they call “cluster care”.  They try to do things that may disturb the boys in clusters as to get it all over with at once, this way they can rest for long periods of time.  The nurses treat them like their own babies and I am always content when I leave knowing that they are in great hands.