What no one talks about...

In the last two weeks we've been through more than I ever imagined life's most difficult moments would bring.  I've talked about the challenges of losing Noah and how we've working through grief.  But there are several things I've noticed, no one talks about.    And for me, that's just as much a part of this painful process.

So here I am talking about the things that no one talks about. I guess this is where I should give the warning... this maybe a post some people want to skip. 

 I've been debating for well over 10 days whether to write about this or not. And I've decided that if anyone ever has to go through what we've gone through, and someday, in the off chance happens to find this blog, than maybe, just maybe what I have to say can help them.  

In losing our son, the reminders are everywhere.  In pictures, in messages of support sent from family and friends.  There is the clothing, the blankets he never wore or used.  The package of newborn diapers, the hospital gives you as a gift... never to be used.  The baby supplies purchased that will remain empty... but there are also other reminders... the reminders when I look at my body.  These are the subjects no one talks about.  

When Noah's health started taking a turn for the worse, it was the subject no one wanted to discuss. We talked about everything from his CBC report, to the gas labs they did, to the respirator he was on and even how much Verset they had given him to calm down.  And since my question really involved me and what was happening with my body, I was okay not asking.  My whole focus was on Noah.

Everything in this process was new for me, and I didn't know if I should ask or just go with what the nice lady had told me back on that early morning, June 13th.  The lactation consultant had told me getting Noah nutrients from my body was the best thing I could do for him and that pumping every 2 hours would be critical in making sure my milk came in and there would be enough to sustain him as he grew.  I guess when a woman goes into premature labor her body isn't necessarily ready to produce milk, hence the reason for needing to be so consistent in pumping every 2 hours.  If there was one thing I could do to help my son, I was going to do exactly as I was instructed.  If they told me jumping off a building would have helped him, I would have done it in an instant.  But they told me to pump and that is what I did.  Around the clock and thankfully my milk came in.  The nurses would tell me I was doing a great job and at one point they told me I had already filled the quota of space they had reserved in the freezer at the hospital, so I could keep my supply for him at home until they needed more.  

I always believed in my heart Noah would come home to us.  I know we'd have to face hurdle after hurdle in the NICU.  They told us that the first day, so I prepared myself.  Never did I imagine that our God would give me him after 10 years of wanting a child from my own flesh, only to take him away from us so soon.  That would be too much for a parent to overcome... our God wouldn't do that right?  And so I continued to pump.  

That was until Noah's health turned and I could see the signs in front of me.  As more and and more equipment was hooked up near his bedside, the medications administered increased and the comments about him not having any "reserves", were told to me over and over, I stopped.   It's when I knew that our happy ending was not the ending to our story and that I was losing my son.  I stayed by Noah's bedside as much as I physically could.  We didn't really eat, we didn't go to the bathroom and it wasn't until the nurse or physician would give us orders to go get some rest, that we'd step away for a minimal amount of time, only to return as soon as possible.  

Staying by Noah's bed I could feel the weight in my chest, the pain of having of having milk ready to be taken from my body to be stored for Noah's future use.  As as painful as it was to have engorgement happening to me, what was even more painful was knowing Noah would never get any of my milk again.  I thought to myself, "What's the point of pumping anyway?"  It will never be used."  And so I'd hold off for another few hours.  With each hug from a family member, nurse or doctor, I was quickly reminded of the pressure and pain of the moment.  It was torture going through those few days, in more ways than one.  

When the swelling, pressure and the burning became too much, I'd wait for a nurse to give me an order to go rest and I'd sneak away from Noah's bed to go pump in the nesting room. A few times I pumped by his bedside, like I did in the good days we had.  It always seemed when he was near me, I'd release more milk.  I considered those times together special bonding times with Noah.  While I wasn't getting to hold him, it was times when the curtain was pulled, I was next to him and I could stare at his beautiful features while I gathered milk for him to use one day  It was our private time together.  I'd talk to him as I did my motherly duty, I'd tell him about Isabelle, Gabriel and Michael and I prayed to God talking loud enough for him to hear.  

When I finished, I placed the bottles of milk on the working station next to his bed, carefully place his label "Baby Boy Haskovec" on it, write the date and time the milk was put into the bottle and I left it there for the nurse.  In the final hours of Noah's life, I knew he'd never drink it and I thought about simply dumping it down the drain at the sink next to his pod, but I didn't.  I put the bottle and label on like I had done all of those days prior and I pretended it was going to be okay.  Thankfully Noah's nurses would always take the bottles, and make them disappear I think to help me avoid the pain of having to dispose of it myself.  

I just didn't know what to do.  I thought if I stopped pumping completely, then I was giving up on my son, but when I knew how it was going to end, I couldn't bring myself to pump every two hours.  Knowing I'd never get to breastfeed my son, that I'd never get to hold him while feeding him a bottle, knowing that my nutrients weren't enough to save him... it killed me inside.  And no one talked about it. 

So I suffered in pain for this loss as well... silently though.  It was the taboo subject.

And it continued.  After Noah had passed, there were several forms we signed, and his belongings, our stuff, all gathered up to take home.  It was painful.  And then came the form to sign off on asking me what I wanted done with all the milk the hospital had stored for us.  At first I said I wanted to donate it.  Noah had first received donor milk before mine had come in and I was so thankful for the woman who had given of it.  I asked if I could donate my milk to the hospital and was told no.  The women who donate their milk for the NICU go through a series of screenings to make sure it is safe, and there are no risks for the babies that will receive it.  Because I hadn't gone through the screenings, they wouldn't be able to take my milk, but they shared there are some organizations that will take donated breast milk.  I could just google it when I got home.  With everything going on around me and knowing we'd have to plan a funeral, and try to put our lives back together; figuring out what to do with our milk seemed too much.  I said, its okay to dispose of it.   The bereavement nurse left the room  to I thought take care of my wish.

Until Melanie walked back in with a huge bag filled with my milk.  Seeing just how much milk I had produced and what had been frozen for Noah made my eyes bulge.  I knew I was pumping a lot but I had no idea how much milk I had saved up for him, and I had a lot at home.  Melanie brought me the IKEA sized bag and had me verify that the bottles all read, "Baby Boy Haskovec."  She then stepped out of Pod A and came back in a few minutes later apologizing, she hadn't been told I had changed my mind and said it was okay to dispose of it.  By this point I had changed my mind again and said, "Its okay, actually I'm glad you brought it to me, I want to keep it, I'll find time to find a place to have it donated."  She said, "Angie, remember you don't have to do this now or even in the next couple of weeks."  It was like she had given me a pass, an extension and it made me feel like I was doing the right thing in taking it home.  So we did.

Before leaving the hospital though, I decided to ask Melanie what I was suppose to do with pumping.  I felt closer to Melanie than anyone at the hospital and knew she wouldn't judge me for asking a silly question.  I just didn't know what to do.  Melanie politely responded and said someone from lactation would come and talk with me about what to do to reduce and stop my milk supply.

Nothing compares to losing Noah but having the conversation with the lactation consultant of what it was going to be like to take steps to dry up your milk supply is crushing.  Pumping and providing milk was the continuation of my pregnancy that ended early.  If I wasn't pregnant, than at least I was making milk and that was my connection to Noah.  Hearing her tell me wear cabbage leaves, to eat lots of Altoids mints and to only pump for 5 minutes or until the pain and pressure was gone, was more than depressing.  She went on to explain that I should only pump a few times a day and decrease that over the next week and a half.  Like losing Noah, it was a process and reducing my milk would be that too.  There's a saying when it comes to removing a band-aid that its less painful if you just rip it off... I was hoping for the same thing here.  Instead it was a drawn out process that each time reminded me... my son died.  And no one talks about it.

For days I tried to pump only for a few minutes as she told me, and each time I felt such different emotions, it was excruciating.  Some times I felt like it was too hard, it just reminded me of the fact I will never get to hold him again so I'd rather feel the pain in my chest, than the added pain in my heart.  And then other times, pumping and producing milk, reminded me of the good days of pumping next to Noah.  I'd picture him in my mind, lead back against my headboard in my bedroom and daydream of the time I had with him.  It was 5 minutes by myself that I still had with Noah and I wasn't about to want to give that up.  A few times I asked Jarrett, "What if I just keep pumping? I can always donate it right?"  Jarrett, being the ever supportive partner that he is said, "I want you to do what you feel in in your heart."  I think he realized there was no right or wrong answer in this situation.  And no book to turn too, no one way to respond.  It was again, the topic no one talks about.

A few days later I packed up the breast pump and I asked Jarrett to make it disappear.  I decided the pain of having to be reminded my milk would never quench my son's thirst was too hard.  So I just stopped.  The tears rolled down my face as I carefully packaged the brand new preemie pump back into the Walgreen's container.  It was the pump Jarrett spent hours tracking down for me.  It was the pump no one in the entire valley had available and it was the pump the nice lady at Walgreen's in Chandler, went above and beyond her duties to help us get one.  

On June 13th the lactation consultant told us we needed to make sure we got the preemie pump because one day when Noah would finally be able to breastfeed, if I had used a regular pump, he would not have the same strength in his suck and wouldn't be able to get my milk to release.  She said preemie babies suck differently and we needed to train my body what it would be like, that one special day in the future when he could drink from me.  Jarrett made it is his mission to find that special pump and after many stores telling us they didn't have what we needed, he found one lady who listened to our story, responded to our need and called her corporate headquarters boss in Chicago to get approval.  She ordered the new $2600.00 pump and had it shipped as soon as possible to get it to us.  It was another act of kindness we had received, I thank Noah for it.    

But it too was packed up and returned, just like everything from this pregnancy.  It too is now gone,  and reminds me that so is my son.  With each passing day, the reminders of what my body was created to do, become a greater distant memory.  There are still some gentle reminders, the crying of a baby causes them to respond, as does the image of my son when I daydream of good days in the past.  I know that eventually they will stop responding and it will be one less reminder from the best and worst days of my entire life.

 I always believed Noah would come home to us.  I never thought he would be taken from my arms as quickly as he was put into them.  But he was and I am living a reality I would never wish upon anyone. I've learned through living these last few weeks that there are many levels of this grief.  There are more things I mourn than I ever imagined and I've learned there are some things that no one talks about.   

Until next time,

Angie