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!

“They both have their own talents!”

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As I have been reporting in previous posts while Griffin and Carter are doing relatively well, they each have some issues that are slowing their progress.   Carter has lung issues which affect his ability to breath and maintain the appropriate levels of oxygen in his blood.  His lungs collapse often and require a jet machine to reinflate them and keep them functioning.  Griffin’s lungs on the other hand look great and he was taken off the ventilator and is now doing really well with just a tube in his nose providing a low-level of constant oxygen.  However, Griffin hasn’t eaten consistently since birth and has only had a bowel movement with the help of medicines.  They have run lots of tests and are now consulting with surgery to be sure that there isn’t an obstruction of some kind in his intestines stopping him from being able to process his feeds.  The good news is that so far none of the tests show any obstruction or serious concern.   So while Carter is up to 2.5 lbs Griffin gains and loses weight on a daily basis and is just brushing 2 lbs. 

A couple of days ago during  our “amens” (prayers before dinner, which we refer to as “amens”) we prayed for both Griffin and Carter and their different situations.  It was after we said amen that Kennedy erupted with a smile and exclaimed “It is so great, they both have their own talents! Carter is a good eater and Griffin is a good breather!”  Her enthusiasm and pride for her brothers was apparent and there wasn’t a sign of concern anywhere on her face.  Here I was praying for God to fix their problems where Kennedy sat thankful for their “talents” as she put it.  

I have thought a lot about Kennedy’s point of view in the past couple days as I stood next to the boys’ isolettes, watching them wiggle, breath, open their eyes, cry, sleep.  As I talked with the doctors and nurses about the plan of action, test results, medications, future tests, breathing rates, xrays.   What an easy change in point of view to make one’s outlook brighter and easier to handle. 

Choosing a mindset of positivity and gratitude instead of pessimism and needs came so easily to Kennedy.  So from now on I am going to try to follow her example.  What a nice way to walk through life, let alone a difficult time!

A Quick Update!

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Since my last post the boys have been holding their own (I feel like I say that a lot,  forgive me if you have read this statement a million times – but it is the best way to explain their status)  and remain stable.  Our slow climb has been pretty positive over the last couple of days.   Both boys are a whopping 2 lbs now!!  When I walked into their room on Monday I was greeted with open eyes from both boys.  Seeing them awake more often is so wonderful for me to witness.  I just want to pick them up and snuggle!  In time, I will!

Carter

He is up to 8 ccs of breastmilk and is taking it well.  He is still having some issues with his oxygen levels but he corrects himself so we aren’t worried.  They continue to adjust his jet settings to keep reinflating his lungs and keeping the onset of an issue similar to emphysema at bay.  His cultures show that less bacteria is growing in his trachea and lungs so this is promising in terms of his infections.  Of course, our wiggly little guy continues to try to escape as he kicks, stretches, arches and squirms all while on a sedation drip.  I’m thinking this is an indicator of his feisty personality!

Griffin

He was taken off the jet machine last night and returned to a regular ventilator. And as of 9 am Thursday morning they took him off the regular ventilator and is now only on a nose cannula!  Lets hope it sticks!  Today we heard him cry – what a beautiful sound!!!  A sign that his P.I.E. (the emphysema like issue) has subsided.  He hasn’t pooped without the help of medicine yet and we think that is affecting his eating abilities.  They hope to continue feeding him soon but he needs to have clear belly xrays, no nasty green suff in his feeding tube and some signs of bowel movement.  They conitnued his feeds this afternoon while I was there – we won’t know if this will continue for a few days to see how he handles it.  But it is a step in the right direction!!! He has had a few spells (O2 and heart rate decrease) but he self corrected during his last one.  Hopefully his brain is catching on that he needs to keep breathing regularly!  He is definitely filling out, and hopefully settling into a routine of rest and growth!

The rest of the family

We are gearing up for Halloween, and continue to weave our NICU life with our home life.  We have been overwhelmed with the support from our friends, coworkers and relatives.  It isn’t until you are in a place such as this that you truly realize what great people surround you.  Everyday someone gives us support either financially, with food, prayers and or kindness that brings us to tears of gratitude.   We truly feel blessed and are filled with appreciation.

This is what they meant by “rollercoaster ride”

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This weekend was really hard for Griffin.  And in turn, very hard for us.  We had gotten used to him being “stable” – mistake #1.  It turns out that his issues were normal for the staff and while they were concerned and attentive, Griffin’s issues were nothing they hadn’t dealt with before for babies his size.  As I write this, he is back to stable (for now) with some adjustments in medications and ventilators. 

Beginning on Friday afternoon, only hours after discussing whether or not to take him off the ventilator because he was doing so well, he started having spells where his heart rate and oxygen levels would drop dramatically.  The nurse or doctor would have to attach a bag to his ventilator to physically get his numbers back to safe levels.  A spell usually resulted in a team of staff around Griffin to check his status and rebound time.  This repeatedly happened on Friday and it is an understatement when I say it is very difficult to watch.  They conducted head ultrasounds, echo cardiograms and xrays to rule out serious issues like seizures, brain bleeds, heart defects…  all of these tests came back clear and yet he continued to have spells.  He was taken off the respiratory study because of all his issues and then somewhere in the midst of all of this his stomach stopped working and so they stopped his feeds.  Just the day before the Dr. had said, “the good thing is that we are giving him nutrition.” The next day – no nutrition.    On our way to a rugby game on Saturday, Tim and I prepared to spend a relaxing day together while my dad had the girls, we called the hospital for an update.  Not liking what we heard we bypassed the game to visit the boys.   40 minutes into our visit we had counted three major spells from Griffin.  What a reminder of how helpless Tim and I are, and how great the NICU staff is at doing their jobs!  That was Saturday afternoon and by the night the spells had subsided significantly.  Thank God!  Since then he has only had a couple more spells.   

During all of this Carter’s saturation levels (levels of oxygen in his blood) were dropping and rising, as they have been all week.  Both he and Griffin have sprouted infections in their respiratory system and have some signs of lung damage and so now both are on the jet machine.  This machine inflates the lungs gently and keeps them inflated.  Their lungs are described to me to be like rubber bands; the more they stretch and shrink the weaker they become.   So a jet machine can be helpful in reducing some of the damage that their lungs have from struggling to breath. 

Suffice it to say, we learned these past few days what it felt like to be on top of the rollercoaster, on the brink of the peak and then come racing down.  Like a rollercoaster our hearts were in our throats, and our hands in the air – truly letting go of any control we thought we had to let God and those equipped to do so take care of our boys. 

Today we slowly climbed back up the hill to the next peak…praying for a plateau at the top – I’d like to skip the hurling to the bottom if we can, I don’t mind just coasting slowly at the top for a while!

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!

First hurdle jumped!

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I think I mentioned that our first hurdle was making it through the first 10 days of the boys’ lives without any brain bleeds.   Well today they are 10 days old, and their head ultrasounds showed no signs of brain bleeds!!  They can still suffer from bleeds at this young age but the risk diminishes greatly after 10 days.  So we were very relieved and celebrated with their nurses this hurdle jumped today! 

On another note, they also had another success this afternoon…both boys pooped!!!  Yea for working digestive systems! 

So today was a good day.  Your prayers are working!

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!!!

What is strength anyway?

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I keep hearing from friends, family and strangers how strong they think I am, how they are inspired or amazed by how we are handling yet another challenge.  These compliments, while wonderful and flattering, have forced me to contemplate if I am really am strong.  You see, I never thought of myself as strong – but rather someone who does what I need to do to make it through. Is that what strength is?  Just making it through?

I like this quote in regards to my approach to being strong:

Courage is not the absence of fear, but rather the judgment that something else is more important than fear. 
Ambrose Redmoon

I am strong because I see no other way.  It is what needs to be done in that moment.  I don’t think this attitude is unique to me, I think this is how most people cope.  Because they have to. 

Don’t let me mislead you, in the comfort of my own home, or when alone in the car and my mind starts to wander there are times when I break down.  Or a random event will happen that will cause me to lose it.  For example, last year a few months after my mom died I was making dinner when I broke a glass dish.  Then Tim and I had to go outside to fix the satellite in the bad weather and we heard a crash come from the kitchen – the girls wanted pickles and in the process the jar broke.  I came inside, took one look at the mixture of shattered glass and pickle juice and went upstairs to cry.  I was crying for my mom – who knows why a series of broken things would cause me to miss her but it was one of the hardest cries I had since she passed. 

To be honest, I’m not sure that making it through the day equals strength – just a strong sense of survival.  Is that the definition of strength? For me, I just don’t see any other way.  This is what is happening to me in this moment, so I focus on just that – this one moment.   Treating each challenge as though it will cause me to spend all day in bed, or cry for hours, or break my spirit will get me nowhere.  Trust me I have tried it, and all it did was make me feel worse.  And besides, I have kids that depend on me. I don’t have time to stop and feel sorry for myself. 

Maybe strength is about perspective.  It is quite easy to lose it, feel defeated and helpless when you lose sight of the goal ahead of you or when you forget that you are not the only one in this world desperately trying to make it through a difficult time.  The week that I spent in the hospital before the boys came was one of the hardest weeks of my life, both physically and emotionally.  There were times when I couldn’t articulate what I wanted to make me more comfortable and I would get overwhelmed with laying upside down, with a catheter and contractions all at the same time.  I rolled over and let the tears roll down my face.  It was a definite low of the week.  But I made it through those few horrible hours by the time night came and in the dark I watched two Mercy Flight helicopters land outside my window.  Instantly, my feeling that I couldn’t take it any longer faded as I thought about who might be on that helicopter.  Perspective. 

I have a friend who has been fighting for her daughter’s health since the day she was born nearly nine months ago.  I’m only on day 7.   And she is fighting with grace.  Perspective. 

In a week it will be one year since my mom died suddenly.  We lost her forever.  Perspective.  

I can make it through today, by simply putting this day into perspective.  

Tomorrow is a different story – but I try not to think about that until tomorrow.

Our 15 minutes!

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Okay it is more like 2 minutes!  Today the boys and I were featured in our local 5:30 news!!  They came to the house and interviewed Tim and I then traveled to the hospital to film the boys.  I must say, the boys looked quite handsome and handled their first bout with fame like all-stars!! 

You can see our brush with fame and read the article at the link below:

http://www.wivb.com/dpp/news/offbeat/Woman-bears-two-children-in-different-uteruses