Isolation and mourning

Are you ready for some more 3am deep thoughts?  This will probably be even more rambling than normal due to the early hour and sleep deprivation.

I had a sad day yesterday.  Most days I'm able to have a sad moment or two and then move on.  Spending time with my boys is the highlight of my world and I'm so thankful they're doing as well as they are.  They're both up to 4lbs10oz and slowly getting the hang of eating.  I'm thankful for every day the doctors say, "no real update" or call them "boring" since that means they're doing good.  But being a preemie mom is incredibly isolating.

Yesterday marked one year since my beloved Grandpa passed away.  I remember telling my mom last year that next we wouldn't spend Mother's Day in the hospital.  Guess what?  We will be spending it in the hospital after all.  It'll be a much happier occasion but it's still not what I had hoped.  I know it's not what anyone hoped.

When I first went into preterm labor I went into my tough girl stubborn mode.  I told friends and family that I was okay, that we didn't need anything.  That was really a lie.  We needed love and support and we got it.  I had so many friends visit us in the hospital and so many people call, text, email, and message me on facebook.  But as time has passed that obvious support has waned.  I can't blame anyone but myself since I keep telling people I'm fine.  Why should anyone think I'm a liar?  I know people are silently supporting us.

But it's also difficult now because most times people want to know when the boys are coming home, or when they can meet them, or when we can take them out once they're home.  The truth is that we don't know.  We really hope our boys will be home by the end of the month but even then our challenges don't end.  Our boys were born 10 and a half weeks early and that doesn't change once they're released from NICU.  We won't get to be normal parents for a long time.  We have been told that even a simple cold is likely to result in them returning to the hospital within their first year of life.  So we won't be able to go to anything where there are large gatherings of people.  That includes taking them to my work, taking them to library story times, visiting Andy's Grandma at her home, even going to the grocery store or mall will present danger.  I know we are going to get called over protective, I know people don't understand.  I would not have understood before.  But it is what it is and the health of our boys is what is most important.

Being pregnant with the boys was isolating because I was tired all the time, I was large, and I couldn't do a lot of the things I used to do.  But being a preemie mom is even more isolating.  I'm dedicated to breastmilk feeding so I continue to pump every three hours around the clock.  This essentially means that every three hours I need to be either at home or at the NICU where a hospital grade pump is available.  I bought a regular electric pump but after trying it yesterday it's obvious the NICU's lactation consultant is right, it just doesn't have the same pumping ability.  So for the sake of my supply I need to continue using the huge hospital grade pump.  I have to pump at least eight times a day for 30 minutes.  That adds up to four and a half hours in a day.  Eight hours a day I am at the NICU working with the boys on bottle and breast feeding, and bonding with them.  Between the 11pm and 11am pumpings I attempt to get a little bit of sleep.  There is very little time for anything else.  But I miss my friends, I miss our family.  Heck, I miss spending regular time with Andy.

I even feel somewhat isolated from my babies right now since the most important thing is for them to continue to grow.  A sleeping baby is a growing baby.  So we really only hold them, touch them, love on them while we're working on feeding them.  I know things will improve drastically once the boys are home.  It will still be difficult, I know, but so much better.  I can't wait until I can snuggle with them throughout the day instead of just at feeding times!

In summary, this sucks.  I've been trying to avoid saying or thinking it since I was worried it would make me ungrateful for how well my boys are doing.  But the NICU support group I attended on Tuesday helped me realize that this sucks and it is 100% okay to feel that way.  I need to mourn the loss of a normal pregnancy and I need to learn to reach out for the support that I need.  Even though the boys are doing well it still is a loss.  I didn't get to have the excited family in the waiting room anxiously awaiting their arrival, I didn't get to have an intervention free birth, I didn't get to do skin to skin time or attempt to breast feed at birth (heck, I didn't get to hold Jacen for 9 days and Spencer for 10), I didn't get to happily leave the hospital with them when I was discharged.  It sucks it sucks it sucks!  I miss feeling them move inside me and it makes me so sad and angry that we were robbed of that time together.  I have so much guilt even though I know all of this is out of my control and that God has a plan.

I hate that yet again I have issues with pregnancy.  After our miscarriage and subsequent infertility I struggled with seeing a pregnant woman.  I told myself that everyone has a story and I didn't know theirs.  But it stung that so many women were able to get and stay pregnant.  Now here I am with similar feelings again.  I mourn the loss of my third trimester and all the normal annoyances associated with it.  As ridiculous as it is I mourn not getting to take the glucose test.  I actually cried last week when a friend mentioned taking it because I never got to.  I realize the drink is nasty, but it's normal.  I didn't get that.

We're finding a new normal but I think it's still okay to be sad sometimes.  I'm just trying to focus of the positives 95% of the time, there really are a lot of them.  I am so blessed to have two beautiful growing boys!  I know that things will get better.