Goodbye 2012, Hello 2013

It's interesting to look over the past year, 2012.  It's been a rough year, obviously, but it's been a good year, too.  As much as I wish things were different, I look back and know that this is just how things were meant to be.

Christmastime

Somehow it seems fitting that my 100th post is also about Christmas.  I always have loved Christmas.  This year, though, it was so different...

The Home Study

I haven't talked about it lately, so here we go!  Our adoption process...  Today was the "dreaded" home visit day.

40 Weeks

Today is my due date, December 21, 2012.  The day that the world is supposed to end...winter solstice...the beginning to longer days...  A lot can change in 40 weeks...

Broken Dreams

As I was sitting at the pharmacy waiting for my prescriptions the other day, I couldn't help by notice that the covers on all the magazines were about pregnant celebrities, most notably the UK Royal Family.  Mamamia posted about this a couple of weeks ago and I truly related to her post, but with some events in my life right now I thought it probably worthwhile to post my own post about it.

Tragedy in CT

Everything going on in Connecticut today just breaks my heart.  For those who aren't from here or haven't watched the news, a 20 year old went into an elementary school after killing his own mother (a teacher at the school) and ended up shooting a total of 26 people and himself. Twenty were children.

A Glimmer of Hope

I have ideas for a number of blog posts right now and I just haven't taken some time to write them!  So you may get quite a few in the next day or two...yay! :)  I think what I'm most excited to share is the experience we had with our fertility doctors...

A Meaning?

I saw the psychiatrist yesterday (more about that at some other time), but he thought that something I said really stuck out...

I'm searching for meaning in a situation where I know there will surely never be a real meaning.  I'm trying to make a meaning for me and in my life so that I don't feel like there was no reason for this to happen...even though there really is no meaning or reason for why this happened.  I need to find one for me.

A Thankful November

I posted awhile back that I was going to do thankfuls for PEOPLE in my life instead of things this month.  I did it every day!  I haven't posted it here and stayed up to date, but I will put them ALL here now...

Back to Work

I went back to work this week.  I think y'all know I've been anxious and worried about going back to work.  I don't feel interested in it anymore, and I was really worried about being able to focus and do my job.

Scars

Today marks two months since Sammy passed away.  It seems like so long ago because it feels like this nightmare I should be waking up from.  But then it seems like it's gone by so quickly...like it all happened just yesterday.  I relive it all the time.

A New Normal

I'm trying to figure out what this new normal looks like...

Happy Thanksgiving!

Just stopping in to wish all our readers a Happy Thanksgiving from our family to yours.

Home for Thanksgiving

Today has been so bittersweet...so many things going on right now...

World Prematurity Awareness Day

Today, November 17, is the second annual World Prematurity Awareness Day organized by the March of Dimes.  I can't believe that I am part of the statistics that this day presents...such as,
1. Every 30 seconds, a premature baby dies.
2. 75% of these deaths are preventable.

My loves

I was thinking today...

Bad week

I have had a hard time wrapping my head around how I'm feeling lately...more or less I've just all around had a bad week...  Really, let's be realistic, I've had a bad two and a half months... BUT I thought I was doing okay...I thought I was getting through this and able to move forward.  Then I find myself at a standstill...I don't know what to do...

Beginning the Adoption Journey

I've been doing a lot of research and calling a lot of agencies and facilitators lately.  All I can say is it's very overwhelming!!  The differences between the two, the number of places to choose from...whether to go local or national, the COST...it's all so overwhelming!!  And don't even get me started on "religious" requirements for some of the better reviewed agencies.  I'm not really sure what being a Christian has to do with being a good parent...I know great parents who aren't at all religious!  Ugh...

Two months

It's been two months...since the boys were born...and now since Andrew passed away...

I miss them every day.  I wish every day I could go back.  I've been hurting a lot today...so much....I can't even begin to describe...I've been in tears for hours...

I've been keeping pictures of Andrew sacred...pictures of his face and of my last time with him.  I decided today that it was time to share his beautiful face with the world.  Though I'm not ready to share all the NILMDS photos nor the ones of his face close up, I am ready to share this beautiful, intimate moment that I shared with my son...I want the world to remember him...to see his face and know how much he was loved.

Angry

I don't know that there's any better word...  They say that one of the steps of grief is anger.  I've been angry for two months.  I've been sad and I've been happy and I've been numb, but mostly I've been angry.

I'm angry that this all happened to US...to OUR boys...why US?  I'm angry because every day I wonder "what if?" and can't stop.  I'm angry that I didn't get more time with them.  I'm angry at EVERY person who can have children without even having to try.  I'm angry at EVERY person who abuses their bodies and STILL gets pregnant and STAYS pregnant.  I'm angry at my body for failing me.  For failing my boys. 

I'm angry at the doctors because I want them to tell me something different.  I want them to tell me that we can do this again and everything will be okay.  I want them to tell me I can try again tomorrow.  I want them to tell me that my body won't fail me again.  I know they can't, and I know that they are telling me what they know, but why can't they tell me more?  Why can't they tell me it will be okay and that I will never have to go through this again?  I just want to know that I won't have to go through this again...

I'm angry that adoption is SO EXPENSIVE.  I'm angry that we have to wait so long for a baby even if we do do adoption and don't want to sell our souls to do it.  I just want a family and I'm angry that it was so close and then so viciously torn away from me...

I'm angry.  I HATE being angry.  I hate wondering why.  I hate wishing every day that my life were different.  I want to go back two months ago and STAY in that moment.  Stay in the moment of loving my boys because loving them when they aren't here is far too painful.  I want to stop crying...I want to stop hurting...I want them back every minute of every single day.

Capture Your Grief Wrap-up

I've struggled with these last two tasks...

Day 30. Your Grief – Tell The World What do you want the world to know about this road you are travelling?  Do you just want your baby’s name to be spoken? Do you want others to know they are not alone? Whatever it is, write it down on a piece of paper and hold it up for the world to see! (We will be making a video clip of these images from this particular day!)
Day 31. Sunset To close this project and month I thought that we could all photograph the sunset from wherever we are in the world. If there is no sunset where you are, you can still take a photo of the early evening sky. You just need to be able to get to a window. Remember to caption what State/Country you are from and the time.

Thankful, Nov 2-4

I am still working on a couple more posts to get myself caught up with Capture Your Grief and Art Every Day, but since my thankful posts are done on FB, I thought I'd add them here since it's a simple copy and paste...

Nov 2: Today I am thankful for my beautiful friend Brynne - We've only known each other for a few weeks, but you've made a huge impact on my life that I will never, ever forget. You know just what to say, when to say it, and how to say it. You get me. People I've known for years don't even get me as well as you do. You've quickly become one of my best friends, and I would never have made it through the past two months without you. I look forward to many more YEARS of iMessage conversations, road and shopping trips, and just all around good times. ♥ ♥ ♥

Nov 3: I am thankful for my friend, Jamie - Thank you for being a part of my crazy life. For making me smile when I need it most. For just ranting about your day or week to cheer me up. Thank you for acting like a normal person when life doesn't seem so normal. I am lucky to have you as a friend and look forward to lots and lots of fun times just us girls and with our boys...talking bunkers and guns and such... :) :)

Nov 4: I am thankful for such a wonderful person in my life - Kari - You and I met a long time ago, but you've since become a great friend. You know more and understand more about everything happening in my life over the past few months than just about anyone. Thank you for lending a helping hand, being so supportive, and just being a great friend. I am so lucky to have had you come into my life. :)  

CYG: Days 28-29

The tasks I've missed for these days are:

Day 28. Memory Share one of your most significant memories on this journey of grief, it can be a positive or negative memory.

Day 29. Music This might be hard to capture in a photograph so break the rules (that we don’t have, hah!) and post a youtube clip of a piece of music that reminds your of your baby/ies/child/ren

Catching up...

I'm way behind on posts these days...I've been doing a lot of crochet and just relaxing around the house.  I've felt a little "off" lately.  It's hard to explain.  I don't cry much anymore...I think I still feel numb...or am back to feeling numb.  I can't quite pinpoint it.  I can't even describe it...except to say I'm "off."  I want to get stuff done around the house and have been trying, but after about 10 or 20 minutes of doing something, I'm done.  I have little spurts of energy and motivation and then I just don't want to do it anymore...

Broken

I've been posting a lot about the Capture Your Grief Project and not much about anything else...I figured it was time to type a normal post for a change!

The big thing I have learned over this journey (so far) is in regards to friends...

I understand that other people's lives go on when I feel like mine can't.  But at the same time, so many of my friends have gone on and I feel forgotten at times.  The people I thought would be there for me are not the ones that I have found the most comfort in.  For that matter, some of my family I thought would be there for me haven't really been either.

Capture Your Grief Catch-up

I'm so far behind on the Capture Your Grief Project right now!!  I'm going to try to get caught up tonight before going back to my projects...then I do owe another post soon....

This time of year

I was trying to figure out why I've been in such a funk this week.  I realized what it was tonight as I was thinking about the date...

CYG: Day 23

Other than the description for today, this post needs no words....

Day 23. Their Name/Their Photo If you feel comfortable, share a photo of your baby/ies/child/ren who you are remembering this month. If you do not have photos, you could use an ultrasound image or something that represents them.

CYG: Day 22

And today...

Day 22. Place of Care/Birth The place that looked after your you whilst you were pregnant. Share a photo of those who took care of you and your baby. This could be a midwife/doula/friend/partner.

75th Anniversary of the March of Dimes

I came across this information posted by another preemie mom on Facebook and just HAD to share here, too.

The 75th anniversary of the March of Dimes is coming up in January.  There is currently a petition to light up the White House in purple in honor of the March of Dimes.  The petition needs 22,000 signatures to be even considered and is currently almost 20,000 signatures away.  PLEASE share this on your Facebook (once you click out to the link below there's a share button) and on your blogs (if you have them) to help get the White House lit up in purple.  Purple also happens to be my favorite color, so I'm looking forward to seeing this happen!  We don't have much time, so please go here and sign!

Sign the petition here!

CYG: Day 21

I've been thinking a lot about this project lately...

Day 21. Altar/Shrine/Sacred Space Share a photo of your special place in your home/garden for your baby/ies/child/ren.

CYG: Day 20: Charity

I like today's project even though I don't have a picture...

Day 20. Charity/Organization Share your favourite charity or organization that has touched your heart on this road of grief. If you don’t have a photograph to share, just simply post the link to their website!

 There are far too many to even begin to try to find pictures, but I will link and talk about each one...

CYG: Day 19

The project of the day...

Day 19. Project Have you worked on any projects inspired by your loss? They could be anything from an art project to organizing memory boxes for a hospital. If you have not yet done a project you could share something that you would like to work on.

CYG: Day 18

Today's project...

Day 18. Your Family Portrait Take a photo of you with your family, work out a way to incorporate your baby/ies/child/ren who are no longer physically with you anymore. You could hold up photos of them or even just hold their names with you. What does your family look like now? Is it just you left here? Do you have a large family? Is it just you and your partner?

CYG: Days 16 & 17

The tasks for yesterday and today...

Day 16. Release Balloons, lanterns, butterflies, doves.
Day 17. Anniversary/Birthday/Due Dates Share a photo of what you did for your baby/ies/child/rens special day. Did you hide away in bed? Did you have a cake? Did you have a party? What did you do?

Post Partum Appointment

Thank you to everyone who lit a candle for Sammy and Andy yesterday.  I could not believe the amazing outpouring I saw on Facebook from everyone.  I think even FB had a wave of light going. :)  I felt like having the pictures of all the people who contributed to the Wave of Light to be much more important than talking about other stuff yesterday.  It should stand on its own.  Yesterday was a very difficult day for me in so many ways.  I had my six week post partum appointment yesterday.  This appointment threw me for a complete loop.  I had been looking forward to the appointment for a long time in the hopes that it would grant me some peace and hope.  Not so much...

October 15

Today, October 15, is Pregnancy and Infant Loss Remembrance Day.  Today's Capture Your Grief projects correlates with the Wave of Light.

Day 15. WAVE of LIGHT Today is October 15th Pregnancy and Infant Loss Remembrance Day. Light a candle at 7pm to help create a continuous wave of light around the world for 24 hours. Photograph your light!

CYG: Day 14: Community

Today's project...

Day 14. Community Our community is so amazing, but with that being said, none of us want to be a member. Share a photo of a community gathering or event that you have attended.

CYG: Day 13: Signs

Today's project....

Day 13. Signs If you believe in signs from your child/ren, share with us an experience you have had.

I do believe in signs.  I believe that there are things that will always remind me of my boys.  I believe that those things are their reminder to me that they are just as much here as they are in my head...

CYG: Days 10-12

I know I'm a bit behind on this...I've been avoiding Day 10...I didn't want to take the picture.  And to be honest, I still haven't...I'll just type for now...add pictures later...

Remembering Andrew

After a rough day yesterday, I figured I owed an explanation.  Well, actually, I know I don't owe it, but I feel like I should talk about it...like I owe the explanation to Andrew, not to anyone else.

We got the pictures from Now I Lay Me Down to Sleep yesterday in the mail.  The pictures of Andrew.  It brought every single moment I had with him back.

Here and Now

I was thinking a lot this morning about the statement "I can't wait..."  I thought a lot about this while we were in the hospital, too.  We throw around this statement so much.  "I can't wait to meet my boys."  "I can't wait until the NICU journey is over." I could have waited for each of those if it meant bringing home my two healthy boys.  Not that it's not okay to dream, no, that's not it.  Dreaming and wishing for later are two different things.  Wishing for later is not looking at the moment you're in.  Dreaming is thinking and hoping about things to come and using the here and now to determine how to get there.  Dreams and hope...they are powerful things and shouldn't be confused with wishing the moments away!

CYG: Day 9: Special Place

Today's Capture Your Grief Project:

Day 9. Special Place This could be a place that you visit that brings you peace. Maybe it is a place that you went to when you were pregnant or where your child’s place of rest is.

Stay-At-Home Mom

If there is anything that this experience has taught me it is that I want to be a stay-at-home mom when we do have healthy kids that get to come home with us.  To be completely honest, that is something I NEVER thought you'd hear me say.  I love working.  I love the sense of accomplishment I feel when I am working.  I love my coworkers.  I just never thought I'd even consider being home 100% of the time with my children.  Until the idea of Sammy coming home on O2 that is.  And now not having either of the boys home with me, I realize that I never want to miss a moment with any of my children.  I was with Andy and Sammy almost every minute I could be, and I'm happy that I can say that.  I want to say that for any future children, too.

CYG: Day 8: Jewelry

Today's task...

Day 8. Jewellery Do you have a piece of jewellery in memory of your baby/ies/child/ren? Share it!

CYG: Day 7: What To Say

Today's Capture Your Grief Project task....

Day 7. What To Say We all talk about the bad things people say to us but we rarely focus on the good that people say to us. Share a tip for those who don’t have any idea on what to say. Write it d own – photograph it.

Understanding PCOS

I've decided to turn my focus in life to my PCOS.  Understanding it.  I was diagnosed with PCOS at 14 but didn't really understand what it was and birth control fixed all the issues I had with it (most notably infrequent and very painful periods), so I just took that as it was all better.  WRONG!  Birth control masks the problem but doesn't take care of it.  It's still there, this ugly little monster.  Until we wanted to start our family, I didn't fully understand what PCOS meant.

CYG: Day 6: What Not To Say

Today's Capture Your Grief:

Day 6. What Not To Say Have you had something terrible said to you in the wake of your loss, write it on a piece of paper – photograph it – vent it.

CYG: Day 5

Today's task:

Day 5. Memorial This could be anything you have had done in memory of your baby/ies/child/ren. It could be their plaque at the cemetery or a tree that has been planted in their memory, anything at all.

Equality

I've been thinking a lot lately.  When you're planning to have multiple children, especially at the same time, you worry a lot about how you're going to make sure that they each get equal treatment...that you don't give one more attention than the other, or that each has the same stuff.  For instance, each time I'd buy one outfit, I'd make sure to get a second, just so that I'd have one for each of them. Of course I obsessed over them not dressing exactly alike, so there was always something at least slightly different between the two outfits I'd choose.

Capture Your Grief: Day 4

Today's Capture Your Grief task is:

Day 4. Most Treasured Item Something that relates to your baby/ies/child/ren. Maybe it is their hand and foot prints or a photograph. Whatever it is we would love to see it.

First Trip Out Alone

I decided to get brave today.  I went to the grocery store.  Of course, I made sure to go before 9:00 AM in the hopes of avoiding anyone I knew since the grocery store is so slow that time of day.  I ended shopping with all the old people.  Go figure.  But hey, that was the most quiet shopping trip I'd ever done!  I might have to make a routine of shopping early in the morning.  I did happen to see a high school classmate, but from a distance.  I made sure to go around and avoid...I felt horrible about it, but I couldn't bear it.  I was keeping myself together.  I didn't want to ruin it.  The entire time I was walking around the store, I had white knuckles on the shopping cart any time I'd turn a corner...hoping I wouldn't run into someone else I might know.  I was avoiding anyone that had a stupid baby car seat on the cart, too.  I was too afraid I'd lose it...  Especially living in a small, not-so-well-off town, let's be real, the people with kids in their carts this time of day are more than likely living off the state, paying for their groceries with food stamps, and can't afford to support themselves let alone the child they have with them.

I really didn't used to be this judgmental or angry, seriously.  I used to be the person that gave everyone the benefit of the doubt.  I just can't bring myself to be that person anymore.  The other thing I realized today was that I'm definitely not my usual outgoing self.  I used to be pleasant with the clerks at the store and people around me.  I used to smile at people I saw in the store when they'd smile at me or say hello (even people I didn't know).  Just because I used to be that smiley, outgoing person.  I was happy (most of the time).  Now I feel like all the judging and feelings of annoyance I'd got before because of people that were rude at the store or anything like that...I feel like I can understand them now.  Lesson for today: Don't judge unpleasant people.  You don't know what they are going through.  You don't know if they are dealing with something horrible.  You don't know why they are unhappy...it could very well be because they just experienced the most incredible loss in their life. 

To be honest, I don't know that there is any loss that is comparable to that of losing a child...it ruins the natural order of things.  Parents shouldn't outlive their children.  I shouldn't be looking for a black dress on every website I can think of.  I shouldn't be picking out a cemetery plot, urns, or anything like that.  Especially at 26 years old...I haven't even lived half my life yet.  I don't know, it's still so surreal...

To top it off today, I went to the therapist for the first time (more on that at some other point)...which happened to be in Hanover.  The whole time I was parking and then walking to her office, I was clenching my fists and just hoping I wouldn't see someone I knew (I work in Hanover).  I was brave and went into the jewelry store to pick up a Christmas gift.  I have been wanting to look for additional non-fiction books (I'm having a hard time reading fiction books lately...) and even though there's a bookstore right in Hanover, it was lunch time and I refused to walk around Hanover more than I had to at that time of day.  I decided to drive to Lebanon instead and go to the bookstore there.  But of COURSE I would see someone I knew there!  A friends' mom.  She said hi and asked how I was doing, I just responded with the "ok, thank you" and kept walking...thankfully she didn't push it.  I was ready to pay and noticed she was waiting in line and walked off to look around and more books just to avoid being stuck in line and creating conversation.

I'm realizing that the problem is that I don't want to see people unless it's on my terms.  I need interactions to be on my terms.  I need to be able to leave the engagement if I get overwhelmed.  I feel like people want to be able to chat, and I am not always in a spot to be able to do that.  I need to have an escape route.  I really hope I can get past that...otherwise going back to work and leading a normal life are going to be very difficult......

Capture Your Grief Day 3

Today's Capture Your Grief topic is as follows:

Day 3. After Loss Self Portrait Share a photo of you after your loss. Sam as yesterday if you would prefer to you can share a drawing/skecth or painting you have done!

Since I haven't taken any pictures of myself...let's face it, I look like crap from crying my eyes out at least once a day and not really being able to sleep...I decided to take a picture of me and one of my furries.  Meet Tigger, our 4 year old orange male cat.  He's a pain in the butt, but the most loveable cat I have ever met. <3

For those of you that know me, you know that I've always had long-ish hair, at least shoulder length.  It's not as obvious in this picture, but I just had to cut it all off.  My longest layer is now at my chin.  I figured since it was no longer summer and hot (it doesn't get warmer than 65 here this time of year, and that's if we're lucky), I would cut it off.  Not to mention that the main reason I had left it somewhat long was so that I could put it up easily if I was chasing around two little boys...  Now that I don't have to do that, figured it was time to go back to really short hair.  I haven't had my hair this short since Cam proposed almost six years ago.  And hey, since I've lost so much weight, have to have a new look to go with it, right?

Memories

I made the mistake of watching Private Practice tonight.  I love the show.  Problem is that the entire episode tonight was about a funeral.  Really.  And although it's fiction, they were reminiscing the entire episode about the dead character (I won't name who it is in case anyone reading this wants to watch the show).  It made me start thinking about the memories I have of my boys.

I hate that the only images that play across my mind of my boys are them dying.  Every time I think of Andrew, I remember watching the doctors and nurses trying to resuscitate him.  I think of holding him for the first time, trying to memorize his face and every inch of his tiny, lifeless body.  When I think of Sam, I think of the last day, backing away from his bed as I watched the same scene unfold.  Even though they resuscitated him, it wasn't the same.  And I start thinking about holding him and watching him stop breathing...the NP coming over and checking for his heart beat three times before his heart stopped.  About cuddling his lifeless body as it got cold and wishing with all my might that this nightmare wasn't happening.  What kinds of memories are those?  Shouldn't I remember the good things?  Good things are what I should be reminiscing, not the end of their lives.

The hard part is that the only time I got to see them without all the damn tubes in their mouths and all the IVs was after they stopped breathing.  I want to remember my babies not in a hospital.  Not in those stupid isolettes.  With nothing sticking in them.  I want to remember them as happy little boys.  I'm so angry that I will never have that opportunity.  Their entire lives were spent in that damn hospital.  I never got to bring them home.  It's so unfair.  Why couldn't I have had two healthy beautiful boys?  Why did they have to be so sick? 

I want to remember them running and playing with Penny.  I want to remember them pulling on the cats' tails.  I want all those things for them and there's nothing I can do to make that happen.  I'm so angry that I never got to bring them home.  That I never got to cuddle their warm little bodies with nothing stuck in them.  I just want happy, good memories of my babies that will never come...it makes me so mad at the world.  It makes me mad at myself for not being able to keep them safely in my belly for another month.  I should be 28.5 weeks pregnant right now and instead I'm recovering from major abdominal surgery with nothing to show for it.  I just want them back.  I just want to make good, happy memories with my boys.  Just one day.  One day with a happy memory of them so that I have something good to hold onto.  I love them so much.

"Capture Your Grief" Project

In case you didn't know, October is Pregnancy and Infant Loss Awareness Month.  October 15 is Worldwide Pregnancy and Infant Loss Remembrance Day.  I haven't quite yet determined what I will do for my boys in my home.  However, the one thing I know I will do is light a candle for each of my boys.  The event is to light it at 7:00 PM, but I think I will light the candles when I get up in the morning and keep them burning.  I am going to go hunt down some pretty candles just for them even though I have plenty of others, they deserve their own special ones.  Guess I'll have to get brave enough to get out to the store...I have 13 days...

Thanks to my beautiful friend Jana's blog at Keeping Up with the Kimmels, I found this awesome project called "Capture your Grief" posted by Carly Marie in honor of the awareness month.

I missed yesterday's :(  But it was the following:

Day 1. Sunrise I thought it would be sweet for us all to capture the beginning of this beautiful project and important month by us all getting up early to photograph the sunrise from wherever we are in the world. I know depending on where you are and what climate you are in that there may not be a sunrise, but if you can still get to a window, snap a photo of the morning! When you share your photo online make sure you write what State/Country you are in and the time of the sunrise {just for fun!}

I wish I had known, I would have definitely done it.  Getting up for a sunrise would have been a refreshing thing to do.  Would have made me feel refreshed in a way.  Like a new day and a new hope...

Oh well, I'll move on and start with Day 2:

Day 2. Before Loss Self Portrait Share a photo of you before your loss. You could share a drawing/skecth or painting you have done if you would prefer that!

This is the last picture I have of me before the boys were born, taken in late July...enjoying our camp on the lake.  My mother-in-law gave me the beautiful and comfortable dress.  I wore it so much while I was pregnant just for something cool to wear...easy to slip on and off.  I don't know, I think I will always relate all of my maternity clothes to being pregnant with the boys, so as much so I want to keep them because I LOVE them all...in case I have a future pregnancy...I'm tempted to get rid of them and start over.  I feel like maybe the clothes have bad juju? I don't know...I'm crazy, I know.  I think I'll change my mind eventually.  Plus, who knows, if I keep this 30 pounds I've lost off, I may not even be able to wear ANY of my clothes again anyways, even the pre-pregnancy ones...shopping spree maybe?

Infertility Support

I posted this on my Facebook, but I thought it would be important to post it here as well...any support I can help this wonderful, beautiful woman rally, would help SO MANY people...


Through some of my research for resources dealing with our loss of Samuel and Andrew, I found this video.  Though this is not my current struggle, it is the struggle I fought prior to fighting to keep my two beautiful boys.  The What-Ifs in this video hit so close to home, it's not even funny.

Fertility treatments are extremely expensive and it IS a disease.  Infertility is NOT a choice!!  And for so many, not having children because of the cost of fertility treatments is heart breaking.  Support for health insurance companies to cover these costs is definitely needed!!

Please, please SHARE this video!!!

Help Wanted

So many people have been asking how they can help.  I know some haven't been contacting us or anything because they don't know what to say or do.  I was reading the book that was given to us before we left the hospital, "Empty Cradle, Broken Heart," and came across the following and thought I'd share with the family and friends reading our blog.  I figured it'd be a good way for people to understand because it explains exactly what would be helpful, and I didn't know how else to put it into words better than this.

"It is common for bereaved parents and their friends to disengage from each other.  Parents often retreat if they sense that their grief is an imposition and then they notice their friends back off even further.  An irony about grief is that when you withdraw, you may need people's support more than ever, but people sense your withdrawal and leave you alone.  If you feel as though your friends and family have backed off, remember, they take cues from you.  Don't fall into thinking, "If they really loved me they would know what I need."  They can't read your mind.  Tell them how miserable you really are and how much you need to talk about the baby.  Instead of waiting for them to bring it up, you can initiate conversations about how painful this is and how much you miss your baby.

Here are some other suggestions you might try sharing with your friends.

• Tell them that you will cherish their sympathetic ears for listening, their shoulders for tears, their calls and their hugs.
• Let them know it's okay to ask questions.  After all, you need to talk about what happened.  If you cry, this means they asked a very good question.  Thank them for asking.
• Confess that you need specific detailed offers of help because you don't have the energy to assign tasks and you don't want to impose on anyone.  "Call if you need anything" is too intimidating to follow through on.  It's much easier to say "Yes" to "When it snows, can I shovel your walk?" or "How about I take your kids to the park tomorrow?" or "Can I drop off lasagna and fruit salad on Friday?"  Remind them that if offers are turned down, to make them again in a few days.
• Explain how you would rather have them bumble through with honest expressions of their feelings than avoid you, cheer you up, fix things or offer advice.  Reveal that the best words to hear are the very ones they are censoring as they desperately search for the perfect thing to say.  The best-and most honest-words are things like "I cant imagine how awful this is for you," or "I want to say the perfect thing to make you feel better but I'm not sure what that can possibly be," or "I'm so sorry your baby died."
• Ask them to use your baby's name and to acknowledge your baby on anniversaries and holidays.  Remind them that even if you get pregnant again, your focus may still be on teh baby who died.  Tell them that you'll appreciate their patience and support as you find your own way through grief."

Getting Out

I've really been avoiding going out of the house much lately.  I know that we have the full support of our family, friends, and community, but I just can't bring myself to go out in public.  I feel like what if I see someone who knows? I don't want to talk about what happened.  I don't want to hear more I'm sorrys.  I don't want to get the sad, pitied looks.  I don't want to be looked at as the mom who lost her babies.  I just don't want to feel like that.  And then I dread seeing someone who doesn't know yet.  Someone saying "oh you look great for being pregnant" or "how are your boys doing?"  I'm terrified of hearing anything like that.  I just know I can't keep it together enough to deal with anything like any of that.  I'm scared that, living in such a small town, a town I grew up in my whole life, I will see someone who will feel the need to say something.  I'm not ready for any of that.  To be honest, I'm utterly and terribly scared that I will never be ready.

I know I have to go back to normal life soon...and I know I will need to go back to work next month.  I just can't imagine my life ever being back to normal.  I don't even know if I will be ready to go out in public or go back to work in a month, six months, or a year...I just know I have to find a way to.  I have no idea how, but I will have to find a way... 

I am a completely different person than I was a month ago.  All the things that mattered to me before, they don't matter any more.  I'm just all around different.  I have always been an outgoing person.  I've always thrived in social situations.  Now I want to just hole myself up in my house and stay busy cleaning, organizing, and putting my home back together.  I guess that's probably my way of trying to put my life back together.  I don't know how I will ever put my life back together.  I will always feel like something is missing.  There is no way that I can make that go away.  There always WILL be something missing, two somethings, two little boys.

I avoid phone calls.  I can't stand to pick up the phone and have a conversation with someone.  I'm afraid I'll break down crying and won't be able to stop.  I'm able to keep myself composed most of the time, so by picking up the phone and breaking down, I feel like I just know that that's when I'll lose it when I would have kept it together otherwise.  I can't bear to let myself lose it more than I already do...  I will text, e-mail, and FB message friends and family though.  I just know that if I lose it, I can still keep talking via text or whatever.  Not that the people that are calling me are people I would mind hearing my tears...I'm just not ready to put myself in a situation where the tears will fall if I can help it.

I want to want to see people. I want to have lunch with the friends who are asking me.  I want to want to see the friends that keep offering to keep me company.  I just can't.  I don't know why.  I don't know what I need to make that happen.  I just know that I am content crying by myself or with Camden right now.  I stay more composed, the less contact I have with other people.  It's not that I don't cry or that I don't think about it...it's just that it's easier to deal with without someone trying to talk me through it.  I just need to cry...I just need to express myself without anyone saying anything.  I just need my husband to hold me and cry with me.  I just need to have the privacy to cry by myself sometimes.  I don't know.  I can't figure it out...

We did go with Cam's parents to check out some land for recreational property that they are looking at.  That was good, and I enjoyed talking with Mom and joking around with Dad.  It felt good to get out in that sense.  After though I felt like I had forgotten everything for a few minutes, and I don't want to forget.  I guess I kind of feel like I shouldn't be allowed to go on with a normal life when my boys weren't able to even have a normal life.  I know that's wrong.  I know I will get past thinking like that, but right now it's all I can think about...how they'll never have a life beyond the hospital.  They never got to see their home.  They didn't even get to meet most of their family.  This is why short outings with family are the only things I can do right now...because I get home and feel like this...  Anything more than that outing today and I would probably have a complete break down.

Maybe tomorrow we'll try some time at my parent's to see how that goes...I'm sure I will feel similarly when I get home, but I have to keep forcing myself to do it...it's the only way that I can see that I will ever get used to the feelings and accept them.  I haven't accepted my feelings yet, let alone what happened.  I know it will take awhile...I just keep telling myself that.  There's nothing else I can do except let time help me work through everything.  Keep myself healthy and busy and remind myself that it will take time.  Maybe time will make it easier to get out of the house in general....we shall see.

Another and Plans

Today brought us the news that Camden's grandfather passed away last night.  Though he's been sick for awhile and living in the nursing home for the past few months, it didn't make the news any less overwhelming.  I feel like we have so many people to mourn right now it is SO overwhelming.  Andrew passed away three weeks ago, Samuel passed away three days ago...I feel like I'm not even giving Andy the mourning time he needs and I'm really just mourning Sam...and now to mourn the loss of a grandparent...it's just like I feel like I can't find enough time in my brain, my life to give each of them the time they deserve.  I don't know.  I know I can give them the time they deserve and I will find a way to mourn each.  Maybe three weeks has just given me the time to come to terms with Andy...I'm hoping maybe three more weeks will give me the time needed for Sam and Papa H.  I don't know.  After almost ten years with my husband (just over four married), Papa H has become as much my grandparent as my biological ones.  No matter how sick or how gone his mind was, it really doesn't make it easier.  Just like the fact that both Andrew and Samuel were so sick doesn't make them not being here with me any easier either......
 _________________________________________

The boys' obituary was posted on the funeral home website: http://www.rickerfh.com/fh/obituaries/obituary.cfm?o_id=1652835&fh_id=11435 
It will also be in next week's Journal Opinion and Bridge Weekly and tomorrow's Caledonian Record.  We weren't originally going to do an obituary but everyone is asking what they can do to help, so we figured putting it out there for people to see would be beneficial for us.  In lieu of flowers, we wanted donations made to either the North Country Public Safety Foundation or the ICN at CHaD.  The first is the organization that helped us out a lot right after my discharge from the hospital.  I can't say enough that what they did for us was the most relieving thing and made things so much easier for us.  To top it off, they did a lot for a local family that meant a lot to me (high school friend), too.  Being members of a police/fire/EMS community that is so wonderfully supportive makes us so grateful.  The second is the Intensive Care Nursery.  If it weren't for that place, our boys wouldn't have even had a chance.

We went to the cemetery this morning.  At 26 years old, I never imagined picking out my final resting place would top the list.  It's such an oddity.  I can't even wrap my head around it.  We picked our plot in the cemetery the next town south of us.  It's a nice corner lot and the cemetery overlooks the beautiful river valley.  But again...not something I really pictured myself doing at 26.  It was strange...  The one solace is that Cam and I didn't even need to talk.  We both knew which of the four lots we were shown was the right one without a discussion.  Strange how I feel closer to him than I ever have.  We have talked more, cuddled often, and just been.  It's made me feel like there is hope for a future after all this.  He's the only thing keeping me going.

What was harder was yesterday's visit to the granite/monument people.  We walked around looking at stones, looking through books of pictures.  When I gave the salesman the names and birth/death dates of the boys, I could see his face fall.  He shook his head.  I could tell he couldn't believe it.  He couldn't understand it.  That is exactly how we feel.  I wanted to scream to him that this isn't fair!  I kept my face calm and I plastered my fake smile on my face.  I choked back my tears and I just said thank you when he said he was sorry for our losses.  The only thing we have left to do to get the stones ordered is to pick the artwork for the boys stones.  Sammy will have a monkey and Andy will have a lamb, we know that, just have to find the pictures to use and approve drafts for the stones. We likely won't get the stones 'til the end of next month...means we won't be able to have their burial until at least November.  As much as that's depressing, it almost makes it easier....I'm not ready to bury them...it's too final.  I can't let them go a third time.  This gives me an excuse to wait......

We still have to find their urns...it feels so impersonal to just choose to put the silly little teddy bear or rocking horse on their urns.  But then the urns are just going in the ground, right? :-S  I dunno.  I found some quotes...I think I'll probably choose those instead.  I don't know.  That's the last decision to really make.  That and finding our cremation jewelry.  I found one with little footprints on it that I can get engraved on the back. And Cam found one that's like a dog tag that he can get engraved.  Now to make the final decisions and order.  Ugh! Maybe getting my necklace and having their ashes in it will make me ready to bury the rest of their ashes...one could only hope, right?

No funeral, just a private burial.  I'm not even sure we want more than just our parents and Cam's brother there.  We can't decide.  And since we aren't religious, it's not like it's some big religious ceremony.  Right now the only things I want to do is read one poem and maybe release some balloons...I don't even know.  Any ideas welcome.......

I found this...

...while looking for something to put on the boys' headstones or urns and it made me cry and touched me so unbelievably that I had to share it.  I am not a religious person now and not sure if I can or ever will be again, but I did grow up in religion and it doesn't stop this from hitting my heart strings.

Can you be a Mother when your baby is not with you?  
I thought of you and closed my eyes and prayed to God today.  
I asked “What makes a mother?” 
And I know I heard Him say, “A mother has a baby.”  This we know is true.  
“But God, can you be a mother when your baby’s not with you?”  
“Yes you can,” He replied with confidence in His voice.  
“I give many women babies, when they leave is not their choice.  
Some I send for a lifetime, and others for the day 
And some I send to feel your womb, but there’s no need to stay.” 
“I just don’t understand this God I want my baby to be here.”  
He took a deep breath and cleared His throat, and then I saw the tear.  
“I wish I could show you, what your child is doing today.  
If you could see your child’s smile, with all the other children and say…
“We go to earth to learn our lessons of love and life and fear.  
My mommy loved me oh so much, I got to come straight here.  
I feel so lucky to have a mom who had so much love for me.  
I learned my lessons very quickly, my mommy set me free.  
I miss my mommy oh so much but I visit her everyday.  
When she goes to sleep on her pillows where I lay.  
I stroke her hair and kiss her cheek, and whisper in her ear, 
"Mommy don’t be sad today, I’m your baby and I’m here.”  
“So you see my dear sweet ones, your children are okay.  
Your babies are born here in my home and this is where they’ll stay.  
They’ll wait for you with me until your lessons through.  
And on the day that you come home they’ll be at the gates for you.  
So now you see what makes a mother,  It’s the feeling in your heart.  
It’s the love you had so much of right from the very start.  
Though some on earth may not realize you are a mother until their time is done.  
They’ll be up here with me one day and know that you are the best one.”


And this one:

“Do not judge the bereaved mother.
She comes in many forms.
She is breathing, but she is dying.
She may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works, she IS,
But she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.”

The "What Ifs"

I know I shouldn't ask myself these questions...there's nothing that will change things now.  I know that in my head...it's just that how can you not?  I need to get these out because I feel like if I don't say them, that they'll just rattle around in my head forever.  I know there are no answers.  No one can solve any of this.  I just don't know how to make the questions stop...

What if I didn't have PCOS?
What if we hadn't done IVF?
What if we'd only transferred one embryo?
What if I hadn't had ovarian hyperstim?
What if I hadn't had the paracentesis procedures for my hyperstim?
What if I had remembered my prenatal vitamin ALL the time?
What if I had eaten healthier?
What if I hadn't had gestational diabetes?
What if I didn't have Factor V Leiden?
What if I had managed my GD diet sooner?
What if the nurse had gotten back to me about my GD diet sooner?
What if I hadn't worked such long days and hours?
What if I had forced myself on bed rest instead of pushing myself so far?
What if I hadn't moved the stupid laundry baskets when I was frustrated that Cam hadn't done it?
What if I had exercised during my pregnancy instead of sleeping all the time?
What if I hadn't started taking the heart burn medications?
What if the doctors hadn't given me all the meds to try to resolve my abdominal pain?
What if I had stayed pregnant just a bit longer.......

If I had done all these things would my boys have lived?  I just wish I could have kept them safe longer!  It was my only job....to keep them safe in my body as long as possible...40 weeks even!  It was my job and I couldn't do it for them.  I know it's not my fault. I know it's my body, but I can't help it.  I feel like I should have done more.  I was their Mom!  I was supposed to take care of them.  That was my most important job being pregnant!  And an even more important job once they were here...

What if Andrew hadn't fought his way out of my belly? Would he have not been so bruised and maybe the bruising led to his acidosis?
What if we had focused more on Andrew from the beginning knowing he were sicker? It felt like they were always working on him when we went to visit, so we always turned to Sam...
What if I had gone to see them more those first few days? Would they have felt my love stronger because I was just outside their isolettes? Could my love have been enough to keep them strong...
What if Andrew hadn't died?  Would his presence in the isolette next to Sammy have kept Sammy stronger? Would they have been able to keep each other strong and alive?  What if they could have been closer to each other...in the same isolette? Would that have helped them?  I can't imagine being torn out of a safe warm place where you feel the presence of your sibling and being thrown into a box where you don't know where your brother is...
What if we hadn't chosen the dexa for Sammy?  Would his lungs have healed anyways? Would his heart then been able to pump the blood to his body that it so desperately needed?
What if we had pushed to have his PDA fixed on one of his good days?
What if they hadn't put him on all the antibiotics?
What if we had pushed for surgery for Sammy's bowels? Were they really the problem?
What if I hadn't held him the two days before he died? Was all the moving that we did the reason he got so sick so fast?
What if we hadn't changed his ventilator?  What if we had changed him back to the jet after things got bad?
What if.....

Nothing I can do now can change any of that...I just can't help but ask the questions.  Some we may get some small answers to after Sammy's autopsy, but it's not going to bring him back, so is it really worth knowing?  Do I want to know that the doctors missed the pnemonia antibiotic and that that's what killed him?  I don't even know the answer to those questions...I don't know the answers to anything....the biggest question I have is why.  Why did this happen to us? Why can't life be fair?  And those questions can never be answered...

I feel like I lost a big chunk of my heart.  I feel like I'm never going to be whole again.  I feel like I lost out on this wonderful and beautiful opportunity to be a mom.  On top of that, being a twin mom was such a joy and seemed like something SO special and I feel like I lost out on that beautiful opportunity, too.  Missed opportunities...I don't know that opportunity is the right word.  Because was it really an opportunity if it was never really in my reach anyways?  I just don't know...I feel like all the questions rattle in my brain all the time...and I feel like because the answers are so far out of my reach that I can never find resolution or relief.............

Poems & Loving Words

The outpouring of support from family and friends...even people I've never met in real life, but who have become just as much a part of my life as those that have been a part of my life all along.  I wanted to use this post as a way to collect the poems, links, songs, etc. that people have posted on Facebook.  Though I'm taking a break from the news feed portion of Facebook for my own sanity, I've still been reading the comments and posts on my personal page...

Posted by our Aunt Jean:
Two Little Stars
Two little Stars shine in Heaven today
And they shine
Their bright lights on me
They have bright shining hair, and handsome eyes,
And a smile for all to see.
There are many bright lights in Heaven today,
But these ones shine down for me.
Yes, these little lights, light up my life

Andy and Sammy for me.
Shine down your light, shine down your light,
Shine down your bright lights on me,
Andy and Sammy, on me.

From Eliza (my bestie's older sister):
Teardrops
Teardrops are falling. We embrace this sad day.
A sweet little baby has just passed away.
So perfect his spirit, so perfect his love,
So perfect a gift from a Father above.

Our child, your family is grieving this day,
In our hearts God has told us why you couldn’t stay.
A spirit so special, so perfect, and pure,
should not have the trials of this life to endure.

You wanted a family, that’s why you came.
To be loved on earth, and given a name.
Then back to our Heavenly Father you went,
fulfilling the mission for which you were sent.

Although our grief is heavy this day,
we know you are happy, and not far away.
Loved ones have gathered close to your side.
Life is Eternal… you’ve really not died.

Know that we love you with all of our heart.
We’ll see you our dear one when this life we part.
Save us a place where we’ll be close to you,
and in joy we’ll embrace, as our love we renew.
by: Ron Tranmer ©

 

Sent by my fabulous fellow twin Momma, Jana (see her blog here!!):

https://www.youtube.com/watch?v=J2CnUtVY35o

Another twin momma sent me this song (Thank you, Amanda):

http://www.youtube.com/watch?v=Hoq44rFNbhY

 

From a wonderful and amazing friend I met by chance on PCOS message boards. Thank you, Mel.
THE CORD (Author Unknown)
We are connected,
My child and I, by
An invisible cord,
Not seen by the eye.

It’s not like the cord
That connects us ‘til birth
This cord can’t be seen
By any on earth.

This cord does its work
Right from the start.
It binds us together
Attached to my heart.
I know that it’s there

Though no one can see

The invisible cord
From my child to me.
The strength of this cord,
It’s hard to describe,

It can’t be destroyed
It can’t be denied.
It’s stronger than any cord
Man could create.

It withstands the test
Can hold any weight.
And though you are gone,
Though you’re not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised, I am sore.
But the cord is my lifeline
As never before
I am thankful that God
Connects us this way
A Mother and Child
Death can’t take it away.

 

Tagged by a fellow MoM:

Thank you, eveyone.

 

Shattered

I'm not sure there's a better word to describe how I feel this morning.  I slept pretty soundly until about 5 AM.  Then I startled awake yet again at 7:15 this morning...24 hours later...

I feel like my dreams are shattered.  Thousands of medical bills and dollars later and we were finally pregnant...even though it wasn't everything I ever dreamed of, I was going to have the babies I had always dreamed of.  I was going to be a Mommy just like I had said I wanted to be since I was probably 3 years old carrying around my baby dolls.  A month ago, I never dreamed this would happen.  Even when they told me the boys had a 40% chance being born at 24 weeks, I never dreamed I would lose both of them.  Even when Andrew died, I felt like, okay, well Sammy is here and fighting strong.  Even Monday morning, before everything happened, I was still dreaming of bringing him home.  I was even meeting with the discharge coordinator!

Now I just feel numb.  My babies should still be in my belly...I should still be calling myself Mommy...now I feel hopeless.  I feel like being a Mom is so out of reach now.  I know in my head I will always be Mommy to my too little boys, but I'll never hear them say it.  I never even got to hear them cry for me.  I don't even know if I comforted them at all because of all the stupid damn tubes and crap they were hooked up to.  I don't even feel like I was their Mommy because I couldn't care for them the way the doctors and nurses could.  It's all I've ever wanted and it was so close and then ripped away from me.  There are no words...life is just so f!(#())* unfair.

To top it off, all that pumping apparently paid off some...my breasts hurt and are hard as rocks from not pumping.  It's a cruel joke my body is playing on me.  A constant reminder.  Why can't my body understand that I don't have a baby to feed.  It couldn't produce nearly enough when they were here, so why can't it just stop.  Why does my body treat me so unfairly?  First with all the PCOS and infertility crap, then with HELLP, and now this...why can't I just be normal?  In what world am I the one who gets dealt all these cards?  Can't they be spread out?  There are moms in the ICN talking about not having a HOME to go to...they're homeless, jobless, and God knows what else, and they procreated just fine and fine, they had a journey in the ICN, too, but they're walking out with their baby.  I have a home, a husband, and more love to give a child than anything and I walk out with nothing except my children's belongings.  How can life be so unfair....

I just want my dream back.  I want to dream and feel like I'm not scared of it.  I'm scared to dream of more children because I don't know if it will ever happen.  And if it does, what's to stop this from happening again?  We haven't met with the doctors but I of course want to know and the internet is so readily available...  All the research I can find says instead of an 8% chance of HELLP, I now have a 50/50 chance of getting it again in subsequent pregnancies.  I can't go through this again...but I so want my own biological children.  I want the pregnancy I dreamed about the first time.  I want maternity photos and a baby shower...I want that dream.  I'm so scared of having that dream because I don't know if it will ever happen for me...

Everything, my whole world just feels like it has collapsed around me...

Samuel Earl

At the time I wrote my last blog post, Sammy was having a bad night.  I got in Monday morning to find that he had needed more dopamine (almost up to the max) and had had a bad blood gas.  An early morning X-ray had showed his lungs were almost fully collapsed and he may have some edema.  Bad morning.  But he was alert and looking at Momma.  No real smiles, but bright eyes and fully alert.

Rounds told us they were going to switch him to the oscillator in place of the high frequency jet.  Basically the same idea, just a slightly different form of support.  No complaints there.  They were also going to check him for infection and what-not, a CBC and all of those good blood tests.  He was also ready for another blood transfusion.  Not surprising, his color wasn't as good as it had been (usually means they'd taken so much blood that he needed more volume).  Blood transfusion number 11.

He got moved to the oscillator around 11:30, right after rounds.  I left for lunch while they did it...too stressful for me.  After I got back, I got some time with him and noticed he looked groggy and wasn't as alert.  I could tell my baby didn't feel well.  A little after noon, they came for an X-ray to check his tubes for his oscillator...scariest moment of my life.  His oxygen dropped.  His heart slowed.  I was reliving everything I had watched Andrew go through...the resuscitation strategy...I had to back away...I am pretty sure I backed myself into the corner where I couldn't see the monitors.  It was too scary.  I was just reliving every moment of Andrew but with Sammy...

They were able to revive him, but his oxygenation never recovered.  His blood pressure was low.  He was glassy eyed...I knew things weren't right.  I did get a few moments of his eyes open, but he was looking through me, not at me.  No smiles.  I knew...

They did an echo cardiogram just to check and see what was going on with his heart.  He still had the large PDA.  He also had some hardening of the vessel from his aorta that takes blood to the rest of his body.  That means his blood pressure in his heart was fine, but it wasn't carrying to the rest of his body.  PDA surgery no longer an option with his unstable condition and the only way to help the heart condition was with medications which they were already doing.  To top it off, they told us the dexamethasone we chose to use that first week may have contributed to that complication.  Great.  Here we thought we made the right decision and it makes you question it, two weeks later.

The doctors tried so many different things...nothing was enough.  We met with the doctors that evening to find out our options were to turn off the machines, try everything we could at the expense of Sammy experiencing pain, or palliative care.  They told us they didn't feel he had a chance.  I could see it on the nurses faces...on the doctors faces...nothing was going to bring my baby back.  Cam and I both knew we couldn't put our son in any more pain, but we also couldn't give up on him.  We chose palliative care...knowing there could still be a chance.  They weren't going to stop any of his current support.

We took that opportunity to hold Sammy...to tell him how much we loved him.  I cuddled with my beautiful warm baby boy for over two hours...just loving him.  During that time, all of his stats improved...not enough, but some.  I maintained hope thinking maybe my love was enough to keep him here...to bring him back.  We went to the BP and slept restlessly through the night.  His nurse came in at about 6 at a time when I had startled awake as it was.  She told us that his blood pressure and oxygenation had dropped off through the night.  They didn't want us to lose an opportunity to say goodbye.

We went right away.  We talked to him, touched him.  Cam held him for the first time.  Then I held him.  Watching those stupid numbers on that stupid screen...knowing his body and brain weren't getting enough blood or oxygen.  It was too hard.  We knew.  We knew he wasn't coming back.  We knew he was suffering.  The only thing keeping him alive her medications and a machine.  It was too much.  We decided to turn it all off and just enjoy what time he had left.  A little after 7:00 AM this morning, he died in my arms.  His heart held on for a little bit, showing just how strong a fighter he was.  He proved that he was a stubborn, strong little boy.  We spent a long time afterward grieving and loving him.  Memorizing every part of his little body.  His perfect little face, hands, and feet.

Life will never be the same.  My sons will always be the center of my whole world.  I can't even put into words how frustrated, angry, or sad I am...there is nothing that can make this better...no words, no actions, nothing.  I can't even wrap my head around it.  But now Cam and I have two beautiful guardian angels and we will find a way to move forward together.  If anything, this whole experience has made my relationship with my husband stronger in a way I never thought possible.  Our love for our sons will always be a part of our lives, our marriage, and our love.

Samuel Earl Elliott

September 3, 2012 - September 25, 2012

Middle of the night

I've started to learn that the best time to blog is the 2-3 AM pumps I'm waking up for.  Mind you, that's if I actually wake up.  I've been setting my alarm to wake up for them...I don't always wake up.  Or, if I do, I hit the snooze a couple of times before turning it off completely and then wake up a little bit later and say, oh crap... :-S  Something tells me even if I brought Sammy home tomorrow, this time of day would still be the best for blogging. Lol!

Nothing really new has happened.  We're still maintaining the status quo.  However, I'm not going to complain.  His dobutamine is turned off now and his dopamine has been from 6-10 mcg/k/hr, titrating based on what he needs.  I'm hoping he can come off of it soon...it forces his heart rate a bit high.  But ultimately, it's going okay.  His bowel perforation appears to actually be pretty much healed because he pooped again yesterday! And then the surgeon came and stuck a swab up the poor boys butt and he pooped some more.  Good signs.  He'll still have his drain in until Thurs/Fri or until it falls out and they may run a dye test just to be sure that there's no more hole.  Then he can start feeds again!  That means maybe he can gain weight a bit faster.  This past week, his weight has fluctuated a bit, but as they've stopped giving him replacement fluids (i.e. replaced his urine output with some combination of fluid), he has continued to gain some significant weight.  We were up to 690 grams yesterday! I am hoping he didn't lose any at all over the past day.  It'd be great to see him actually getting bigger.

We spoke with Dr. Suresh briefly yesterday who's on this weekend and asked about the PDA ligation...he told us we would talk to Dr. Edwards about that this week.  He mentioned our two options are going to be to wait for Sammy to get better or do the surgery (obvious choices, but figured I'd outline them).  It will be interesting to hear the good and bad of each option.  I'd really like to focus on one thing at a time for Sammy.  If his bowels are healed, I'd like to see him gain a bit of weight and get a bit stronger before the surgery.  But, in my opinion, it's a balancing act of how long they can maintain that and medically maintain his blood pressure until the surgery is the only way things are going to get better.  It scares me to do the surgery because of collapsing his lung to do it when he's had such problems with his lungs...we'll see.  All we can do is get all of the information and make the most informed decision for Sammy's well being.

Sammy is 3 weeks old today! :)  I can't believe it!!  It's crazy that that much time has already gone by...I have no idea where fall has gone.  One day the leaves are green and it's 80 degrees out, the next we're lucky if it's 65 and the leaves are all turning.  I love this time of year usually, so here's hoping I can take some time and enjoy it.  Maybe I'll make my way up to the orchard up the road and get some apples for apple crisp and cider donuts.  I've been spending time at home in the evenings now.  We didn't get back until late Saturday night because I held Sammy for about an hour while they worked on changing out his isolette, but Cam and I still spent some quiet time together.  And last night we got home at around 7 and just relaxed.  It was nice.  I did get some picking up done...minor amount, but some.  It's nice to have the time and energy to get stuff done at home.  It seems like forever since I've had that.  Maybe it's me nesting. :)  Another month or so and Sammy's room will be finished so I can really get to work. Hehe!

Cam and I talked last night about getting tattoos in honor of our boys.  I've always wanted a small tattoo anyways and after everything with Andrew, I feel like I owe it to him and Sammy to make sure that I have a memory of them with me all the time.  Plus I want one!  We have an impression of Andrew's foot that I figured I'd try to get a rubbing of to use and then Amy (one of Sammy's primaries) got some great ones of his foot a couple weeks ago that I'll use.  I'm going to do their small little footprints with their names and birth date (one of each of their feet) on the inside of my right ankle.  Now I just have to brave up to do it...and find a good tattoo artist in the area...  Cam also thinks he'll get one on his upper shoulder of a cool version of the boys' zodiac with their birth date.  I like it a lot.  And it will be good therapy for us and something for us to do together. :)  A great way to honor Andrew's short fight and the continuing one that Sammy will have.  I'm so proud of my sons and love them to the moon and back...

Home Sweet Bittersweet Home

After three weeks of not sleeping in my own bed, not having my own kitchen, and not having my own bathroom with wonderful shower, I decided coming home would be a good idea.  I timed it at a time when Camden is home at night...just in case I have a freak out.  So far I'm up pumping and just had the best four hours of sleep I've had in almost a month.  I think it's going pretty good.  I of course am still freaking out that something could happen to Sammy and I'd need to get to him and I'm about an hour away, but so far he seems to be doing okay.

On Thursday, he pooped! That's a good sign his bowels are working again.  But we haven't had any since and our ostomy bag has slowed down leaking, so here's crossing our fingers.  However, we're not sure what's happening after last night.  The nurses wanted to get his isolette switched out...which of course meant he had to be moved anyways, so why not allow me to hold him while they do, right? So I got to cuddle my baby for a bit.  Problem is that all the moving must have irritated his little tummy because he vomitted yellow stomach bile. :(  It scared both me and Cam enough to have the nurse come look and she used his OG tube to pull even more out of his stomach. :(  Poor baby.  That was enough for me to be officially scared, so I really didn't hold him for as long as I would have liked.  Plus, Cam was anxious to get home (we're talking it was already 8:30 at night anyways) and nervous about us holding him anyways because the last time was when the bowel perforation happened in the first place. I just couldn't relax holding him knowing his poor little tummy was acting up.  The nurse said a lot of times it can happen with a bowel perforation and they'd keep an eye on it.  :-S  So now I have no idea how things are going after thinking we had a great day and everything.  The nurse did confirm that he would have had that in his stomach even if we hadn't held him.  The only thing holding him did was maybe all the movement jostled him enough to vomit it up.  That made me feel a little bit better, but not 100%.  I'm still a worried Momma.

Other than that, he's still on the jet ventilator.  Dr. Edwards wanted to move him to the conventional ventilator on Friday and they attempted, but Sammy wasn't ready.  Hopefully soon.  We'll see.  They did catch yesterday morning that the top of his right lung was partially collapsed, so they worked with the ventilator yesterday to try to recover that and I'm sure we'll hear of another X-ray when we go in tomorrow morning (or call).  Here's hoping they've recuperated it!  And that there's nothing else going on in his abdomen.

He did gain some weight...but then he lost it again.  He's still hovering around his birth weight.  I'm really hoping all the playing with his TPN (IV nutrition) to get it maximized will help.  Then if his bowel heals and he can have breast milk again, hopefully that will help, too.  Only time will tell.  As of yesterday morning, he weighed in at about 1lb 5oz, an ounce under his birth weight. :-S  Beats the almost 3 oz under his birth weight that he was hovering at for a bit!

Yes, being home is great, but it means planning a bit more when I leave to spend time with Sammy.  I will see how this new routine goes!!

The Others

I wasn't going to post this and I was going to journal it, but I just don't care...tonight has just pushed me to the edge...

The one downside of David's House is that you're not allowed to have food in your room, but you have cabinet and refrigerators space in the kitchen.  You're not allowed to leave the kitchen with any food, so I'm trying to respect that...which means even if I want a stupid cookie, I have to sit in the kitchen and eat it.  Fine, whatever, but I just want to eat...I don't want to socialize with the people that tend to hang out in the kitchen.  I understand the idea is to get you to bond and socialize with people so that you can find something in common and find a mutual comfort in sharing your stories....

Two problems with that...firstly, my son is the youngest of all the people I have met (or well, overheard) in this house...by a LOT.  And he's also the sickest.  Let's not even try to compare a 32 weeker who is already in the carpet side to my 24 weeker who will be on the tile side for weeks to come and hasn't even started to get better.  To clarify, the tile side is the critical care versus the carpet side which is a little less so.  I dunno...I just don't see that I can find any solace in talking to moms whose kids are actually getting better...  To top it off, none of the women I just "met" in the kitchen can be older than 21-22.  I know that that's not that much younger than me, but most of them are talking about baby daddy not being in the picture at all.  Oh, and let's not forget them bitching about state assistance.  Yup, that's right friends, they don't even support themselves.  And another thing, pretty sure most of them I have seen outside smoking.  This group isn't even the beginning of the people I've seen in the ICN that have smoking or (what appears to be) drug problems.

It makes me so mad.  I did NOTHING to get here.  I took care of myself.  I stopped drinking all alcohol and caffeine before we even started the fertility drugs.  I took my prenatal vitamins. I never missed an appointment.  I did everything I was supposed to.  I had no control over delivering my boys this early.  And to top it off, I couldn't even conceive them by accident (yes, ladies and gentleman, these girls were also talking about their babies being unplanned...).  I just can't get over how unfair this all feels.  I can tell myself over and over again that this was meant to be.  That this was what life's plan was for us.  That we'll be stronger as a couple and a family because of this.  That doesn't make the pain and the frustration...the hurt, and the sorrow...it doesn't make any of that go away.  I will always be a mom who lost one of her sons.  I was supposed to have two healthy babies...I was supposed to have a baby shower and be pregnant and happy.  I wanted maternity pictures to show off my happy round belly.  This was supposed to be a happy occasion. We were supposed to have congratulations coming to us...not I'm sorrys.  Everything seems so overshadowed...I just want to be happy and enjoy being a mom.  Instead, I'm a stressed mess and can't even relish the fact that I'm a mom because I'm scared that I won't have anything to show for it...I don't know if my remaining son is going to live.  We haven't "turned the corner" yet.  I'm sick of being scared...and that's an understatement, I'm terrified.  I'm jealous of all the moms who, okay, their babies are sick, but they can hold them any time they want still.  I know from what everyone has told me to not compare our situations to others in the ICN, but it's hard...you can't help it...

I just want happy news...I want to feel like things will get better...I wish we lived closer to the hospital and my anxiety weren't so bad and that I could go home and not feel like it were too far away from Sammy...I wish he could come home with me sooner rather than in three months...I just wish things had happened so differently...I know I can't change it and there's nothing I could have done, but no amount of telling myself that makes this better...it doesn't make it easier.  All the other crap in our life that has happened doesn't compare to this battle.  This one takes the cake.  Who knew you could love someone so much and be so scared.............

Mama Bear

I've started to realize I've become a Mama Bear for Sammy.  He's lately had a nurse that makes me very uncomfortable.  I've given her a few shifts to give her the benefit of the doubt, but she just is so inexperienced that it makes me so uncomfortable.  I know she needs to practice to get experience, but it's my son's life, and I never feel like I can leave when she's there because it scares me.  We left for lunch yesterday and came back and he was all slouched down and his hips weren't aligned (which could be bad for his long-term development).  To top it off, earlier in the day, Cam had had to move his OG tube out from behind his head, too.  I just can't deal with it anymore.  His tube got knocked out of his adapter yesterday, too, and it took her a few seconds to realize it versus his other nurses who realize right away that that's what's going on (hello alarm bells on the respirator).  We've had problems with the adapter as it is, so it's not surprising, but just not to realize that that's what it is is just scary.  To give her credit she did notice that one of his IVs was leaking and needed to be re-placed.  However, she had to call a more experienced nurse over to do it.  That's fine, I respect that she didn't try when she couldn't do it.  However, two nurses came over and one said she could re-place it in his head, and the other said his arm.  I was very uncomfortable with his head since it's the ONLY place left that we can touch him to comfort him and I tried to voice that, but that's where they placed it anyway.  And the medication running in it was a medication that irritates the injection site (amphotericin). LOVELY!  I just felt so discouraged after I left the hospital at yesterday's shift.  His night nurse wasn't bad, but I haven't really gotten the most comfortable with her yet either.  It bothers me that we don't have a good night nurse primary team...though I guess the day nurses are more important since they interact the most with the attendings and we do have a good day nurse team...

Every time I leave the hospital I start to get anxious...wondering if the hospital is going to call me at all while I'm gone.  I had started to get over that until the 4:30am phone call last week.  I had even started to feel like I could go home to sleep until that phone call.  Don't get me wrong, David's House is nice, but it's not home.  I know I would sleep better at home.  I know I would be more comfortable...but my anxiety is getting the best of me.  Today I even started to feel like going home at night would be nice...until the end of shift.  Sammy likes to protest end of shift.  Today has consisted of trying to get his blood pressure under control.  He had been off of blood pressure medication (dopamine) for almost a week and then when he got sick, he needed to go back on it.  That's fine...but they've had to play with the dosage all along to get him to have good pressures.  So yesterday they checked his cortisol levels to determine if he needed hydrocortisone.  His level was 8 and the doctor said that with the stress his body is under they would expect to see it at 15-20.  As a result they decided to give him a steroid called hydrocortisone.  They had hoped to see a difference after he got it...no such luck.  They started him on another blood pressure medication in conjunction with the dopamine, new one called dobutamine.  We should have seen a difference from this one within a few minutes of him getting it, but then his blood pressures were dropping lower than they'd been all day.  It definitely didn't make sense.  It scares me...because if his blood pressure isn't under control I'm not confident that the other stuff is going to get better.  I mean, I guess the good news is that he is still showing no signs of infection (though he is on a bunch of antibiotics) in relation to his bowel perforation, but we won't know for awhile if the bowel perforation is healed.  The surgeon and neonatologists seem pleased with medical management of it for now which is nice because surgery scares me, too.

I am just at a point where I feel like nothing is getting better...absolutely nothing.  I just want to see one or two things improve instead of everything go backwards.  I know this is a roller coaster and that for each step forward we can take four or five back, but it'd just be nice to get some confidence and hope re-instiled.  Instead, I just keep getting more and more scared...

We did meet with the new doctor this week.  I haven't had any complaints about him so far and meeting with him was nice.  However, I was hoping to come out of that meeting with some level of relief and maybe a bit of hope.  We didn't learn anything in the meeting we didn't already know, really.  I mean, he went through any and all questions we had, but (for good reason and I understand) he couldn't give us a good outlook of how things are going to go.  He confirmed what we knew: We haven't turned that corner of things looking up yet.  Yup, knew that already.  This doctor isn't concerned about his lungs at the moment, but feels his PIE has pretty much resolved (one good thing, right?!) at this point, though his lungs are still hyper expanded at the moment.  His bowel perforation is one of the bigger concerns at the moment, so his ostomy bag will stay in place for a total of 7-14 days or until it either falls out or stops draining.  So far he's still got drainage of some type.  Toward the end of that window, they may run dye through him to see if it comes out where it should or goes into the bag to determine if he's still got a bowel perforation.  I'm crossing my fingers that it will heal itself and he won't have a blockage or need surgery for any reason on his bowels.  His heart is still a bit of a concern, but this doctor doesn't seem convinced that the problem is his PDA, though he thinks it may be the likely candidate, it's not 100%.  The good news we did get is that he felt that Sammy could likely withstand the surgery to have a PDA ligation.  He is ordering an echocardiogram tomorrow to look again and make sure there is no other issue that Sammy is having with his heart other than his PDA since Sammy didn't respond to the hydrocortisone the way they had really hoped.  Other than that, they are still focusing on his nutrition to make sure that he's getting as many calories as possible so that he can get bigger and feel better.  If he's got more calories, then he will feel better and his body can heal itself better.  So far we haven't seen the results of that yet.  Here's hoping that a few days of more nutrition will improve things and we'll see some weight gain!

Other than that, I don't know what else there is to share...here's hoping I don't get a phone call tonight and that I can go in tomorrow to find my baby doing a bit better.  Oh yes, the last thing to talk about...his arterial line (in his foot) has now been in for almost two weeks which is a long time.  They were starting to question if it was actually reading his blood pressure properly...when I left, the nurse and I were both questioning it...so perhaps I'll find out in the morning that he has a new art line and his blood pressures are reading correctly and looking better...hey, a momma can hope, right?! That's my wish for now...oh and of course getting to snuggle my baby again would be really fabulous, too.

One day at a time

We started with a new doctor this week. So far I like him. He listens to us as parents, respects my son's boundaries (i.e. our want for slow and steady), listens to Sammy's nurses (and respects their input), and seems like a wonderful teacher with his students (something I hold high respect of).

Needless to say, we aren't making any big strides by any means. Our belly tube is draining into an ostomy bag to try to help heal our bowel perforation. So far there hasn't been a clear sign that his bowels have healed (i.e. poop), but neither the surgeons nor the doctor are too concerned. The expectation is that he will have the tube and bag probably for 10-14 days or until he either poops or it stops draining. We are on day four right now and it's still draining. It seems like there's more gunk in the bag today but my impression is that's because it's not leaking for a change.

The doctor wants to get Sammy off the jet ventilator, but he's respecting that it is going to take some time. Today, despite the RTs want to make small changes, the doctor wants to leave it alone. That's fine! They are making other changes so leaving his respirator alone makes sense to me. His PIP has gone back up but he has been handling somewhat lower FIO2 levels for a change, so I will take it! He hasn't shown any sign that his lungs are getting worse so they aren't really focusing on them right now. From what I've read though, I'm going to guess after 15 days on the respirator, we officially have BPD, a chronic lung condition. This means we will have to be extra careful around germs and smokers when we go home.

Today's focus is getting the little man some more calories and nutrition through TPN (IV nutrition) in the hopes we can get him gaining some weight. He had finally reached a few grams above his birth weight yesterday, but he's back down a few grand below today. We really are hovering at the 1lb 6oz mark for now. Here's hoping we can see more growth that's not solely fluids soon. Mommy will be very excited when he hits 2lbs!

The other focus today is getting him onto a better medication for his blood pressure. Because of his PDA (most likely), he is having low blood pressures. They have been treating him with dopamine, but that makes his heart rate high. Ugh! So today they will test his cortisone levels to see if they can put him on hydrocortisone instead of the dopamine. Here's hoping! His other blood work today will be his newborn screening, testing for genetic disorders that could affect his care. He had them done 48 hours after he was born, but they do them again at two weeks just to be sure. The likelihood of something coming up that we didn't know about after the 48 hour are quite unlikely, but I'm still crossing my fingers and toes!

Other than that, we are just moving along at our slow and steady pace. One day at a time.