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.

Bright eyes!

After a long day yesterday in which Mommy was a worried and stressed mess, Sammy pulled through the night.  He did have a collapsed lung in the middle of the night, but seems to have recovered fine from that.  Our current situation is that we're on about 4 different kinds of antibiotics, one of which he'll have for a week (anti-fungal) because of the fact that he also had a tube inserted into his belly.  The tube is to drain any air or other yucky stuff that drains into his abdominal cavity from his perforated bowel.  His distended belly and then an X-ray showed that he had free air in his belly which is the sign of a perforated bowel.  Seems as though that's healing okay though as Sammy is looking and feeling MUCH better today.  He isn't as pale as he was yesterday and much more wiggly.  He's also not de-sating incredibly when he's touched during his cares.  And Cam and I got to do his cares again today (temperature and diaper change). That made me feel a lot better.  Not being able to pick up my baby and comfort him yesterday when I knew he didn't feel well sent me into tears many times yesterday...among other things!  I had a few times I couldn't stop crying yesterday over the silliest things.  But then again my worry and complete and utter fear of Sammy being so sick kind of drove the tears.

The big news today is that Sammy's eyes have almost completely opened finally!!  His eyes have been fused shut since he was born, so seeing his eyes for the first time is the most exciting thing in the world.  He looks more like a little baby and it gives him so much more personality!  I can't get over how much he looks like Cam.  It makes me so happy to see him smile and react to us so much.  I can't get over how much he's changed in just two weeks time.  We even got a few little smirks today! I am so in love with this amazing little man...

When the phone rings at 4:30 AM...

...I know something's up.  My heart is in my throat still. :(  And of course if it were just his nurse telling me he was okay, I would be okay and not be here.  Instead, it was the nurse practitioner.  Even more scary.

Long and short of it, we had a fairly good day yesterday until after dinner time.  I got back to the hospital after dinner with friends to find that he had been "naughty" according to his nurse.  His blood pressures had dropped fairly low and his WBC came back with a lot of bands.  With that, he was back on dopamine for his blood pressure and antibiotics in hopes to catch whatever was causing the high WBC issue.  They also started the indomethacin for his PDA yesterday.  His belly had still be bloated though which concerns me.  It looks (when we change his diaper) as though he's still working on a poop but with the indomethacin, it could still be awhile just because that can slow his bowels down.  Okay, so as if that didn't stress me out enough...

The nurse practitioner calling has sent me into no sleep mode.  They think he has free air in his abdominal cavity (hence bloated look of his belly).  She has surgery consulting to see if he needs a drain.  They also had X-rays to check his bowels and she's a bit concerned, so she's wondering if maybe he has a perforated bowel, again something that can be caused by the indomethacin for his PDA.  She also had them stop the ventilator briefly so that she could listen to his heart and he still has a loud murmur, so so far the indomethacin doesn't seem to have worked.  They think possibly his WBC stuff is now because of his bowels so he's on a new antibiotic, too.

The NP told me she didn't think that I needed to come in yet, but after she hears from surgery, she is going to call me.  *sigh* I'm a nervous wreck right now.  Surgery for my baby is dangerous right now...but what's happening is even more dangerous...I'm freaking out utterly and completely.  I'm so scared of what this could all mean for my baby.  And to top it off if the indomethacin isn't working, things may not get much better either because his PDA seems to be causing lots of issues in general.  I'm a mess...and of course Cam isn't here.  I called him, but he doesn't seem in a hurry to get here.  And i know it's because there is nothing we can do for Sammy right now, but it would be easier for me if Cam were here or we were together.  I just don't know if I can handle doing this without him for the next three months...but I just want there to BE a next three months...I'm so scared for my baby!  Here's where my anxiety is going to grab control of the wheel and send me into a crazy mess of emotions.  I'm still so hormonal...

The one good part of this is that the NP said that Sammy still seemed to behave okay and was acting well, so she thinks maybe they've caught everything going on just before it is affecting him in that way. That's great, but it still doesn't make it much easier to hear all this stuff.  She's supposed to call me back after she hears from surgery about their consult.  She told me to try to get a couple more hours of sleep if I can because she didn't think I had to come in yet.  I know that if I went in, there's probably not much I could do, but I feel guilty staying here when he is dealing with all this.  And as if I can really sleep now that she's called!  Plus she said she would call back and if I didn't hear from her within an hour to call back for her.  *sigh* So we wait.  Patience is a virtue, right?  Working on that right now...

One week today

I have debated writing this post for the past week, but since it's been one week ago tonight, I think I owe it to other NICU moms and to my son to talk a bit about his last night with us a bit more.

Andrew had been very sick from the beginning in comparison to his brother.  He needed the jet respirator right away and didn't even tolerate that very well.  He didn't want out and therefore came out bruised from the doctors trying to get him out.  His color never got any better from the bruising either.  He had issues with his CBC among other things and needed a blood transfusion for that within 12 hours of being born.  Andy also started to show really high acidity of his blood = acidosis.  And things just kept going bad.  We got discharged from the hospital on Thursday, but the boys' doctor insisted that we "room-in" because he felt that Andy was very very sick.

At 9:30 that night, the nurses came to tell us that the ICN had called and wanted us there right away.  We got there and started washing our hands (protocol) and they told us to hurry over and forget about washing our hands.  SCARY!  They pulled us over and his nurse was doing CPR and all the residents and NPs and everyone available was at his bed.  His monitors were going crazy and his heart rate was purely being maintained by the CPR.  His lung collapsed and he just was not doing well.  I couldn't focus on anything other than knowing that my baby was dying right in front of me.  I wanted them to stop because I knew in my heart that it was over.  I knew even if he survived for five minutes, we'd see that moment again.  And at that point, what kind of life would he have? At 24 weeks, 6 days, his brain without oxygen for the time he was coding would mean very severe if not debilitating disabilities.  The doctor on call came in and looked at him and consulted with the residents for about a minute and came over to tell us she thought it was time they stop and I agreed.  She asked me right away if I wanted to hold my baby.  I of course said yes.

They immediately cut his wires and IVs so I could hold him before he got too cold.  I just held my baby in a blanket and cried...I don't even know how long or anything...I couldn't stop for the longest time.  It was the first time we'd seen his face and really seen what he looked like.  He was so perfect...every inch of him.  He was so tiny...almost no weight at all in my arms.  I held him to my skin and just mourned the loss of such a beautiful little boy...my son.

I won't go into much further detail because I feel as though the remainder of our time with him was so private.  I will let any mom know who may face this situation that our hospital was amazing.  His nurse was unbelievable.  They brought in a photographer from "Now I Lay Me Down to Sleep" to take photos of him.  These photos will be our private memories of our son, but as a result of this fabulous volunteer organization, we will have pictures of him without all the tubes and everything stuck to him.  Our nurse also did foot and hand impressions that will be a wonderful memory of our son.  We were given a box with all of his belongings in it to bring home.  He obviously didn't have much, but we have his blankets and lovies that will be a large part of our home when we find the proper way to display and honor the memory of a beautiful life.

Getting Settled...maybe?

After four nights in the hospital, 6 nights at the hotel, I'm now moved over to David's House.  I'm not so sure how I feel about it yet.  It's convenient, that's for sure.  I just don't feel comfortable here yet.  I know it may take a day or two...or more.  I like it, don't get me wrong...it's nice to have this option at a MUCH lower cost per night than a hotel.  There just aren't people I've seen here yet that I feel I can relate to.  The people I've seen around are creepy...for lack of a better word. :-S  Not that I'm going to be here to do much more than sleep and maybe eat now and then, but it's just kind of weird feeling.  *sigh*  To top it off, they called us and told us we had a room here at 8:30 last night...kind of late when we had to let the hotel know by 1:00 PM!  So we checked in last night anyways...but then when I got here this morning, I had a note in our mailbox asking me to speak with the house manager.  Since our room didn't look used they were all concerned that we hadn't stayed here last night.  Well no duh...not going to pay $150+ for a hotel room just to pack up in the middle of the night (instead of spending time with my sick baby) and move over here...but at the same time, if we hadn't taken the room last night, we weren't guaranteed to have it tonight and we couldn't pay for the hotel again.  I feel bad because I know that they just want to make sure people actually need the rooms, but it just felt very weird to me.  It kind of gave me a bad vibe, I guess.  I dunno.  Maybe I'm just reading too much into it.  I like the idea of not needing to commute.  I can literally walk and be to Sammy in 10 minutes if I want. :)  It's a really nice walk, too, actually.  I'd like to transition to being home at night, but I just can't get myself to do it yet.  And to pay for the gas just seems stupid...then again, the gas would be cheaper than the suggested donation for David's House (though we aren't REQUIRED to pay, I don't feel right not doing something!).  I dunno...I'll stay through the weekend, I think and then see how I feel.  I might start staying at home at night just for the comfort factor.  Or taking advantage of the many friends that have offered a place to stay as well...

Cam is home tonight for the very first time.  And to top it off, the doctors told us today that they thought Sammy was stable enough that us being at home would be okay if we wanted to.  In other words, things won't go so wrong so fast, in their opinion, that we can't be 45-60 minutes away.  I just can't be that far from my baby yet...I'm not ready!

Other than that, Sammy is doing pretty good today.  As far as we know (no news = good news), his blood and urine cultures didn't show anything so no infection. Yay!  And then they lowered his PIP on his respirator and he tolerated it really well.  So they lowered it AGAIN and he still tolerated it.  They lowered it again one last time before I left and we may have hit his last stop because he didn't seem to tolerate it as well.  His blood pressure was also kind of dipping a bit more tonight.  My poor baby. :(  They didn't start his medicine for his heart valve today because they want to see how his tummy is doing.  We got in and his little belly was quite bloated.  But it is still soft! His X-ray showed that his bowels look a little funky, but they are hoping that it's just him working on moving them a bit.  We will see what tomorrow brings for that.  Basically they don't want to start his medicine because it can affect his bowels (perforation) if they aren't starting to work yet.  Ultimately, they can still cause a perforation, but if his bowels are working right, then it is less likely.  Again, never thought I'd be so excited for my kid to poop! Here's hoping there's a good poopy diaper when we get in in the morning.  But other than that, we had a fairly uneventful day.  Yay, Sammy!

Sammy - Day 9 in ICN

Not a lot of big updates, but figured I'd sum it up...

We have been sitting through rounds most mornings.  Now that I've done it with one baby and have started to read and research what all the stuff means, I'm actually starting to enjoy it.  We get to talk with Sammy's doctor after and the nurse usually works with us to understand anything that we still don't understand.  It has really helped me understand what decisions are being made about Sammy's care and question what is being done to him.  I feel like I have a little bit more control when I can understand what's going on with his care throughout the day and what changes might be made and what to expect.

Sammy was quite sleepy most of yesterday and after going back in his isolette after his kangaroo care, his blood pressure plummeted.  As I said last night, the nurse practitioner really thought it was his PDA (open heart valve that usually closes in babies a few days after birth).  The senior resident (Dr. Tyler) working with Sammy had his ventilator turned off very briefly to listen to his heart and heard a murmur so they ordered an echo to look at his heart.  The echo was done mid-day and still wasn't read by 10 when we left the hospital, so we will see what that says in the morning.  The protocol would be to treat him with a medicine that he received in the first few days after he was born again.  The hope would be that this would fix it.  In rare circumstances, he still may need surgery to fix it, but I'm knocking on any wood I can find that this isn't the case!  The other problem with the medication is that he can't have his steroids at the same time, so they will stop those.  However, his lungs are looking ever so slightly better in terms of his PIE.  His hyper expansion is still an issue though.  They are kind of hoping that the medication for his PDA and resolution of that will help his lungs, too.  I'm crossing my fingers!!

So yes, his lungs aren't a whole lot better.  But then again, they aren't worse!  And they were able to bring his oxygen saturation way down to 36 today! His PIP and rate stayed the same until this afternoon.  He had a REALLY good blood gas and so they decided to go down to 34 on his PIP.  We were there for his blood gas this evening after that change and it came back good, too.  We're handling it well so far!  I will be interested to hear what the docs say in the AM.

The other downside to the medication for his PDA is he'll stop breastmilk for awhile.  BUT he did POOP today!!  Who knew we would be SO excited for our baby to poop! LOL!  He started getting a little bloating in his belly, but his belly was still soft.  X-rays showed that he had some swirlies in his intestines, so they think that he's just working on passing poop and gas through his bowels.  We're hoping to go back in the morning and hear that he left a nice poopy diaper for his new night nurse. :)  Yup, we're excited about him pooping now...I'm sure we'll regret that later on!!

He was having some problems with the respirator tube staying attached, but his RT changed the adapter and he seems to be good now.  We were getting a little worried they would have to try redoing his intubation.  Scary stuff!!!  Any time a young baby like Sammy is intubated there's risk of it taking too long and oxygen deprivation.  There's also risk in injuring his vocal cords.  All stuff we don't want!  As long as they can keep his current tube in the better!

I think that's it for our day!  We move to David's House tomorrow morning, so I can finally feel a bit settled!  Thank goodness!!

Nurses

After just calling (yes, at 4:30 AM, hey, they encourage it, okay!) Sammy's nurse to check in, I figured I'd do a quick blog on the nurses.

The biggest thing I didn't learn until after Andrew passed was the concept of "primary" nurses.  This has been a lifesaver for my sanity!! Primary nurses mean that when that nurse is on, she will be assigned to my child (I say she because I haven't met a mail ICN nurse yet).  We currently have 1 daytime primary, 1 nighttime primary, and 1 swing/variable shift primary.  We also have 1 "love" (she doesn't get first dibs over a primary, but has priority over someone new) on night shift.  And the good news is that ALL of these nurses have requested primary for Sammy but are also individuals who I would request as primary myself. :)  Very happy with that outcome!  I don't want someone caring for my son that doesn't want to, so it definitely has to be a mutually agreeable thing.

I hope to say all good things about Sammy's nurses since I'd like to share this with them further on down the line. :)  So far I have no negatives! :)

I'm usually a "trust your gut" when it comes to people type person.  For instance, I didn't particularly feel comfortable with the nurse who was with Andrew his last day (day shift).  I didn't know why and I still don't.  I'm still not really sure if it was mother's instinct that things really weren't going well or that the nurse just wasn't the right nurse for Andy.  Either way, she hasn't worked with Sammy since, so I think I'll try to keep it that way...at least 'til he's bigger.  I actually haven't even seen her again since.  On the other hand, the nurse that was with Andy the night he died is the nurse that I still have yet to find again.  She made that most difficult experience as pleasant as is possible under the circumstance...as a result, I really want to ask her if she'd at least be Sammy's love.  But I want to ask her.  I don't know if she'd want to be.  I felt like she was mourning my son almost as much as I was and I don't want her to feel like Sammy is a reminder of that if it makes her uncomfortable.  So my goal is to talk to her and find out if she'd be interested.  It would be helpful in my mind to have another night primary or love.

So nurses - I am in love with the nurses.  They are so much a part of Sammy's care and will be for so long.  And on top of that, they care for me and Cam.  They are all so amazing so far.  I couldn't ask for a better experience.  Cam says he's still trying to remember all their names, but I'm not sure if he's joking or not. Lol!!  Let's put it this way, they can read when I'm upset and feel like we're having a bad day.  They also make sure that they answer all of our questions, especially after rounds.  I feel like it's such a special experience to have my son in the ICN...special in obviously an unexpected and not great way (of course I don't want him there!), but special in the sense that it's a special kind of care.  It definitely takes a special kind of nurse!

Right now, my favorite nurse is his daytime primary.  Immediately after she was in after Andrew died, she voiced her frustration that no one had called to tell her (it was 2 days later!).  That made me feel like she cared so much about my children that she wanted to know about their wellbeing even when she wasn't there.  Ever since, I have really leaned on her.  After my crazy milk meltdown, I asked her about contacting the LC.  She jumped right on and talked to me about my milk.  She got me all kinds of info and helped me when I was pumping by Sammy's bed.  She just made me feel like someone cared about my frustrations with my milk (finally!).  She was a little bit of tough love (you need to pump MORE), but a little bit of compassion (it's okay to be frustrated, we'll work on it).  I just felt like for a few minutes I could take my focus off Sammy, relax knowing she was caring for him, but also relax because she wants to help me do what's best for Sammy.  It made me feel good! :)

His night nurse last night (and tonight) called me yesterday morning before her shift ended to check in and tell me how his night had gone.  Now my heart jumped to my throat when I saw the hospital calling, but after talking to her, I felt better and more relaxed about taking our time to get going to the hospital for the morning.

All around, my experience with nursing staff has been incredible.  I can't believe how incredible.  I even had amazing nurses in the birthing pavilion.  Two in particular that I will be making sure to keep updated on Sammy growing up.  They just made my incredibly emotional stay in BP so much more comfortable and I felt such a connection with them!  I feel so incredibly lucky to have met amazing people so far...and I'm sure I will meet MANY more!

Kangaroo Care & Sammy Day 8

I think I'll have a few smaller posts tonight, but figured I'd start with the BEST part of the day!!

Today I got to hold my warm, wiggly, squirmy little boy for the very first time!!  It is so surreal. I can't even put the emotions into words at all.  Even better, we cuddled up in the recliner and took a nap. :)  Even Cam napped in the rocker while Sammy and I slept. :)

The best part is that our amazing nurse took our first family photo. :)

 

It was a little nerve wracking to get him to this point, but my heart was going a mile a minute because of how excited I was.  We had to wait for his respiratory therapist to come before he could be moved, so I made sure I went to the bathroom at least 3 times so I could lay still with him for the at least hour of holding time.

His sats really dropped on his move over, but once he got comfortable, he was quite content.  A little wiggling at the beginning and he settled right in.  Then we had to take his temp to see how he was tolerating it and we got a little more wiggly.  But we really liked laying on our belly for the first time! :)  His sats didn't drop as low on the move back over to the isolette, so that was good.

We are told that they will encourage kangaroo care as often as Sammy will tolerate it.  Cam has said he'll let me be the one to hold him each opportunity until Sammy's a bit bigger...I'm not sure that that will continue to be true.  Cam also told me he wouldn't change Sammy's diaper until he was a bit bigger and he changed it today. ;) ;)  They told us that once he tolerates being out with me well enough, he can come out twice a day, so Cam will have the chance.  Of course they do encourage me holding him more so right now because it should help comfort him since I had him in my belly and because it may help my milk supply issues (HA! I actually had less after holding him!).

After his kangaroo care session, he had to have a blood culture and urine sample taken as well as his blood gas and all kinds of fun.  Blood culture is because his CBC (complete blood count) this morning showed elevated white blood cell count.  This, as most know, is a possible sign of infection.  However, the senior resident managing his care came and told us that she and Dr. Saresh are about 99% sure that the increase in his white blood cells is because of the administration of his steroids, so they aren't terribly worried, but the blood culture will tell them for sure.  It takes 48 hours for the blood culture! Momma is going to be nervous until it's back!

On top of that, his blood pressure was dropping and staying just below what his absolute bottom line should be, so they started to get a bit concerned.  The NP came to talk to us and tell us that it could be any number of factors including if he does have infection.  It could also because they dropped his fluids and the amount he's urinating is dropping off so maybe they dropped his fluids too much.  It could also be because he has a PDA (hole in his heart that usually closes in babies within a few days of being born...not in Sammy's case).  It could also be because he needs a little bit higher dosage of the steroids.  Needless to say, it will be a wait and see to see if he needs to go back on dopamine for his blood pressure control.  I did call a couple of hours later and find out that it had gone back up and was holding at that higher rate.  So hopefully we will stay that way through the night!

Additionally, his blood gas was REALLY bad in the CO2 department.  The respiratory therapist (RT) thought it was because he didn't have a good "wiggle" after he got moved back into his isolette.  Sammy really doesn't like being on his right side and they had put him back on his right, so they moved him to his left and redrew his blood gas.  That one came back just a bit lower, but still high.  UGH!  I really wanted to stay until we knew for sure, but we came back, got dinner, and relaxed at the hotel.  I called his nurse and she told me that they had just redrawn his blood gas so they didn't have it back yet.  Honestly, as much as I worry about his lungs, his blood gas and them playing with the settings on his respirator aren't as scary to me as the risk of infection or the blood pressure problems we're facing right now. :-S  He's been very finicky with his respirator, so I usually assume that we'll have good days with it and bad.  He actually has been WAY down on his O2 (50% or less) most of the day, so that's good.  The goal in morning rounds was going to be to bring down his PIP since they weren't as successful at bringing down his rate yesterday.  So it may be that he's just not tolerating these changes well yet.  And the scary part of that is if they can't wean him down on one or the other, we still face the issues of his hyper expansion and his PIE not getting better.  They are down to X-rays for all that stuff once a day now instead of twice though since they aren't seeing much change.  I'm suspecting we will find out tomorrow that they are going to bring his steroids back up tomorrow to try to resolve ALL of these issues, but we'll see.

The GREAT news this morning was his 1 week head ultrasound showed NO brain bleeds! YAY!! Not even a grade 1!  That's so amazing!  They did say it showed an "artifact" which they will rescan for in a few weeks.  I guess an artifact is just something they think messed up with the image, but they recheck after awhile to make sure that's the case.  Okay, whatever, it's nothing to worry about according to his docs.

Other good news is that he' still getting milk. We're on a five day test of it.  So he gets that with his TPN which now includes lipids.  Now if only I could get my milk production up!  But that's for a separate post...I definitely have some follow up for that!

Anyways...I'm off to pump and do my 4 hour sleep stretch before pumping again...I am sure I will post more again in the middle of the night if I can't get to sleep...and can I just say...a nice hot shower is the BEST feeling in the world.........

Pumping and Milk Supply

I'm going to start this post now and keep adding a bit over the next few hours.

It's two am and I set my alarm to pump. I have been getting mixed information on whether I should be doing that but I figure trying it can't hurt.

My supply has sucked. For the first five days I just assumed it was because it wasn't coming in very fast. But now on day seven I'm starting to worry...get discouraged and frustrated. I'm lucky to get a tablespoon each time I pump. My right side is stronger than my left and the left is showing no real signs of catching up.

I've been googling and even got a book from the lending library about producing more milk. Most of the crap is about actually feeding a baby not exclusively pumping. I can't find anything about exclusively pumping. And what I do find is not encouraging information.

What I have found is that all of the following are reasons I specifically may have supply issues:
1. Premature birth
2. C-Section
3. Administration of Magnesium Sulfate (after my delivery for my blood pressure)
4. Administration of betamethasone (steroids)
5. PCOS (hormonal issues)
6. Need for fertility treatments
7. Gestational diabetes
8. Stress (ummm...how to avoid this one???)

I think that's it...long enough list for you? And on top of that, not being able to touch my baby doesn't help either. Skin to skin contact should supposedly help but I don't know when that's going to be yet. :(

I tried calling the lactation consultant today and the ICN paged her and she didn't answer her page in the almost two hours I waited for her. Now that's encouraging. :(

It made me cry to come back from the pumping room and still not have seen her and yet had another slow pumping session. On top of that, there was another mom in the room pumping one side who filled a bottle. Wtf? I know I can't compare but seriously, wtf? Not fair.

I have said from the very very beginning of our pregnancy journey that this is the one thing I really wanted to do for my children and was determined to do it. And now more than ever I know this is so important for Sammy and I don't feel like its enough! It's the only thing I feel like I can do with Sammy in ICN and I'm not even good at it! Sigh....

And see so now I was going to stops post there since I was done pumping and try to sleep...problem is I'm now wide awake. Ugh!!!

So let's continue...I am starting to think that food is definitely part of the problem. The mag sulfate really killed my appetite. And then being a stressed mess with two sick babies and then the loss of Andrew killed my appetite too. Now that I've been eating more and more often I do see a bit of a difference in my milk but not much. And I don't know whether that difference is because of time or food or both. :-S

Things I've tried and results:
1. Eating more (see above)
2. Watching tv and relaxing - no significant difference
3. Pumping right after spending time with Sammy - I feel the urge to pump in my breasts after being with him but don't feel it necessarily increases my supply
4. Pumping room after spending significant time with Sammy - only tried it once and the combination of waiting for the LC who didn't show and knowing other moms aren't experiencing the same issue just stressed me more and no significant difference.
5. Pumping next to Sammy - I find this the most effective as it is the most relaxing for sure, but I don't find it significantly increases my supply at all.
6. Pumping longer and more often - no real difference at all.

What frustrates me about pumping and makes me just want to give up:
1. All time consuming! A 15 minute pump session takes actually 30 minutes between getting set up and then cleaning up.
2. Cleaning up - washing all the parts and pieces is a pain in the ass. I gave in and bought a second set of supplies (one for travel, one for not). Also I received the tip from a former NICU mom to put the bottles in the fridge in between instead of washing. I do this st night to save me some zzzs (though as you can tell this doesn't really matter when one can't sleep anyways).
3. Jealousy over my production compared to other moms I see in the ICN bringing bottles of milk from one session. I am so scared to waste even one drop.
4. Can be painful. No matter what setting I try I can't find a setting that seems to work for both breasts but due to 1 above I am not feeling like doing two separate sessions. I have finally bought some lanolin to rub on my nipples to help. I also started trying to use the next size up of flange but I don't know that it's right, do another reason to talk to the LC.
5. Not feeling supported. Cam is great and helps clean bottles and pieces when I ask. And when he sees or I tell him I'm frustrated he is very supportive and encouraging. However, I haven't felt a lot of support at the hospital at all. The nurses are fine with me pumping there but then when I give them the milk after they don't really ask how it's going or say anything. I feel like they should know if I'm supplying enough and give me some feedback even if that is to contact the LC. But then we see how well that worked yesterday when I tried to do it on my own...another unsupportive feeling. All the NICU moms and friends I have shared with that I'm pumping have been supportive too but it just doesn't feel like enough and isn't the support I feel I need right now.

I feel like I am probably looking for a quick fix but I feel like if I don't establish a good supply now I won't get the experience of nursing that I feel is so much a part of the mom experience I wanted. And this is an experience I don't have to give up if I can get help early as far as I understand. I just am so discouraged right now!! :(

Here's hoping that the LC actually responds to her page tomorrow...I'm going to get some sleep in hopes that will increase my supply some...

Sammy - 1 Week Old

I know I just posted, but I feel I owe one last post tonight.

Sammy is 1 week old tonight.  We made sure that we were at his bedside today at 7:02 to wish him a happy "birthday."  It meant so much to celebrate that with him...as a family.  He was even holding my hand. :)  So so happy.  Such a huge milestone with so many more to come.  Each day is a milestone, but I felt like 1 week was huge.  I will say that it really brought up a lot of emotions knowing Andrew isn't here to celebrate the same milestone, but I just thank my stars that he's now Sammy's guardian angel.

So here's my handsome little man sucking his thumb.  No more bili light today = no sunglasses and a hat! :)