When Happily Ever After Is Going To Start In The NICU

Sorry this update has taken so long.  It has been a long two/three days.  The good news is, the baby has not been born yet.  Every day he stays inside is a day that improves his chances of survival and a healthy life.  The bad news is, I’m on my third day of active labor and it doesn’t look like the end is near.  The worst news is, the end of the labor is just the beginning of a whole new, difficult journey for me, The Prince and the baby.

Yesterday was one of the hardest days of my life.  The contractions weren’t fun but the worst was our talk with the neonatologist.  It was her job to explain to us what would happen after our baby is born.  There will be no tearful moments with the baby in my arms, where we weep in happiness as we begin the rest of our lives as a family.  Instead, our baby will first be handled by the large team of professionals that will be in the room with us during my delivery.  There is an incubator beside my bed already with all kinds of tiny tiny instruments in it.  When our baby is born, he will not cry.  His lungs won’t be developed enough to allow him to.  He will be rushed to the waiting incubator and wrapped in Saran Wrap (literally…they use the brand name Saran Wrap and I know this because it is sitting by my bed) from head to toe, except for his face.  The Saran Wrap will keep him from seeping liquid through his fragile skin and will help keep in his body heat as he lies under the large “French fry lamp” (that’s the neonatologist’s term) at the incubator in my room.  He will be suctioned and will immediately have a mask placed over his face, with the "team" manually "breathing" for him until they can get him and his incubator into the neonatal intensive care unit (NICU).  Then they will determine whether he needs to be on a ventilator, or whether his lungs are mature enough that he can breathe with just the help of the cpap machine pushing oxygen in gently.  That will be his first minutes of life…and there is nothing I can do to change that.  I won’t see him for at least 45 minutes after his birth and, for weeks, we won’t be able to take him out of the incubator, which will keep him warm and moist, or to hold him in our arms.  We will be allowed to visit at will and to touch him, but not to hold him next to us.  Not at first.  Even typing that is hard.

All of that isn’t even close to the worst of it.  Even in a best case scenario, it will take a couple of months to teach him how to be able to eat and digest breast milk.  I will be pumping from the day of birth, but he won’t be “fed” my breast milk for a long time.  His stomach and intestines wouldn’t know what to do with the milk and starting him on it too soon could lead to a disease of the intestines that can require surgery or be fatal.  He will eat through an IV that goes through his umbilical cord; then through a PICU line that runs through his arm, down his neck and into his stomach; and then through a tube that goes down his nose and into his stomach.  He’ll hopefully start learning to suck around 5 to 6 weeks after birth and he'll need to be able to suck at least a bottle before he can be discharged.  For  months, he will get breast milk mixed (at times) with a special formula, because he will need different nutrients from most babies.

He might need to have blood and fluid removed from one or both of his lungs (via aspiration with a needle or insertion of a tube into the lung) at some point early on, as the air sacs in 30 week old lungs can collapse easily.  He may need cardiac surgery to close the hole in his heart that would have closed on its own if he made it to term (or the hole might close on its own during his first week or two outside the womb).  We will have to check his eyes for years, as babies born at 30 weeks can have retinas that don’t form properly, leading to vision problems.  He’ll have frequent hearing tests and developmental check-ups, so that any cognitive delays can be addressed quickly, giving us the best chance at correcting any issues that come up.  There is the potential for mental retardation or cerebral palsy.  There are so many other “possibilities” that I just can’t type them all.

The neonatologist had to go over the worst case scenarios with us (all of them) and have us sign consents for various procedures.  The chance of any one of these things afflicting our baby is less than the chance that it won’t.  Many of the problems have a very low chance of occurring.  I keep telling myself there is a chance of any baby having problems at birth.  But, most mothers don’t get the talk we were given…because the fact is, our chance of facing these issues is higher.  Higher because I can’t keep this baby inside of me as long as he needs to be.  Dr. Google gave a consult last night, and I was encouraged to find that the majority of 30 week old premies usually make it home by 38 weeks and usually have few issues after the lungs and eating issues are resolved in the NICU.  The most common ongoing issues are gastro-esophogeal reflux disease and an initial speech delay which corrects itself by the time the child is pre-school age.  Many children, perhaps even a majority, born at 30 weeks seem no different from their full-term counterparts by the end of the first year of life.  We just have to hope that our baby is one of those success stories and that his journey through these first few months and years aren’t too hard.

The neonatologist watched me try hold it together and be hopeful while she talked.  I think I did a good job.  But as soon as she turned to walk out of the room, I wailed...literally had a wall of sound encompassing all of my fear and anguish just escape out of my lungs like a blaring siren.  I couldn’t hold it all the way for her to get out the door of our room even though I had tried to.  I just crumbled.  She came back and held my hand, cried a little herself (which I thought was amazingly compassionate for someone who does this stuff day in and day out), and offered to help me get in touch with the psychologist the hospital provides for parents going through these circumstances.  I declined the professional help, for now.  I know I need to be strong for our baby.  I know that feeling sorry for myself and for the baby doesn’t help and won’t solve anything.  But I still can’t seem to hold the tears at bay for more than a few hours at a time.  

 All of the nurses and doctors refer to our baby by name now.  I know why they do it.  They need me to start bonding with this baby and feeling positive about his arrival now.  They want to help me feel secure that they care about him enough to know his name and use it (Yes, his name that I have kept a secret from family, friends and everyone else).  They are all awesome…the nurses, the doctors, everyone at this hospital.  I know I am in the best possible place to have this baby and I have the best specialists involved in his care.  No psychologist can tell me anything I don’t already know about this situation, and talking to a stranger isn’t going to help me.  Not now at least.

I’m not letting myself question why this is happening.  I started going there yesterday, with the “Was I not meant to have a baby and this is my punishment?  Who punishes a baby for a mother’s refusal to give up on her dream of having a baby?” or “Is God trying to teach me a lesson about priorities and letting go of my own will?”  I’ve quickly rejected those thoughts and labeled them as what they are- BULL SHIT.  This preterm labor happened because preterm labor just happens sometimes.  Unpleasant things just happen sometimes.  Things like infertility.  Things like pregnancy losses.  Things like preterm labor.  Things like the drug addicted woman in the room next to me asking how soon she can get outside to smoke after they wheeled her drug addicted baby to the NICU this morning.  These things happen and there is no good reason why they happen.  I just have to have faith that I am strong enough to handle what is coming.  Everyone here at the hospital tells me that they know we are a strong couple who can handle parenting a premie baby, and that they have no doubt our baby will be a success story, propelled by our love.  If outcomes truly came down to how much the parents loved the baby, they would be right.  But that’s not always how it works.  Anyone who has been exposed to the land of infertility knows that.  We will love and support our baby with every ounce of strength in us, but how things will turn out is out of our hands…not because of some punishment or lesson…but just because.

If this post seems disjointed, I apologize.  This is probably one of the most important posts I’ll ever write and yet, I don’t care how the words come out…I just need them out of me.  Like a purge.  I need to share my pain and fear and frustration, and I don’t care how I sound. 

Through all of this, The Prince has been amazing…truly amazing.  He has sat by my bed until I make him go home to eat and take care of the pugs.  He talks to me and tells me it will all be okay, even though I see the pain and fear in his eyes.  He has sought support from his own family, so he can support me without showing any weakness.  He brought me ice chips and cold clothes for my face and neck for hours on end, when I was dealing with the side effects of the Magnesium IV and the steroids they injected into me for the baby.  He has held my hand through painful contractions.  He keeps encouraging me to view each frustrating setback in this labor as a good sign that our baby is getting to stay a little bit longer in the best place for him…my loving body.  I have never loved The Prince more than I have loved him the last couple of days.  He really is amazing and the baby is so blessed to have The Prince for a daddy.. 

I’ve also never seen such an outpouring of love from family and friends.  I’ve offered a general overview of the situation on Facebook, but I’ve offered very minimal details of what is going on.  Even people I haven’t seen in 20 years have comforted me with their words each day.  All of my IF friends have reached out to me.  I’m not able to reach back yet.  I’m not able to really talk about the reality of what is going on.  I think it might become too real.  I am afraid my fragile façade of strength will tumble if I bring anyone from the outside into our situation.  I haven’t even allowed the doula to visit me.  I just can’t do it.  I’m hoping I’ll feel differently soon.  If I have a long stay here (and Dr. C said today that he is amazed I’ve made it this long and thinks I could be looking at this labor going on for even as long as a week or two, though he doubts it will go on much longer than that), I am going to need to see and talk to my friends for support.  The Prince is going to need for me to have that alternate source of support.  But, right now, I just can’t.  I'm afraid of everyone avoiding the big purple elephant in the room, nervously avoiding starting a conversation about what is happening and instead stumbling through a topic we can only half focus on.  I am afraid that the first hug, or tender squeeze of the hand, or smile and nod of recognition of what I'm going through, will lead to a visit during which my friends watch be bawl like a baby and then apologize a million times to distract myself from those emotions.  Even kindness hurts a little somehow right now.  I don’t know if sitting alone in this stupid room crying over my keyboard is better than sharing this experience with my friends, but I’m afraid of the unknown.  If it is possible for me to feel worse right now, I don’t ever want to know what that feels like.

I really hope that I am able to keep up with this blog…to keep my closest friends (those I’ve met and those I haven’t) updated on what is going on.  I’ve realized that this may become a much longer second chapter to my “Fairy Tale” than I ever imagined.  I still see our baby’s birth as our “Happily Ever After.” We've succeeded and been blessed when so many others have not.  I have faith that we will bringing our baby home one day in the next few months and he will be ours forever.  "Happily Ever After" has morphed into something new, but I will never lose my gratitude for the gift we've been given.  I guess I just now realize that “Happily Ever After” can have dark chapters too.  That phrase is a whole other journey in itself...and ours is a bumpy journey.  

Eventually, I may need to start a new blog, one about the baby’s journey that family and friends can access for updates about his condition and care, but which doesn’t discuss my infertility journey in the great detail and honesty that this blog does.  Colin's extended family and, to an extent, even my own family, care about us enough to care about our baby.  But it would be impossible to keep writing to all of them with updates.  I think a blog may be the answer.  I guess I will cross that bridge when I come to it.  For now, I just want to say thank you for all of the kind comments that you’ve sent me and thank you for following this journey which has taken a most unexpected turn.  I hope to have good news to share soon…though not too soon.  Love you all.

Drowning In A Sea Of Memories

This evening I decided to tackle the enormous chore of cleaning out my bedroom.  It has gotten to near-hoarder status and I knew it would be no small task.  But generally, when I am clearing away old things and cleaning a space, I feel my mood lift as I go.  It’s as if the emotional baggage, attached to the things I own, leaves when the items leave.  But not tonight.

Tonight, as I came across one thing after another, reminding me of the past few years and what I’ve been through, it was as if it got harder to move…harder to breath.  I felt like I was in emotional quicksand and each new forgotten thing I discovered was another weight attached to my feet, pulling me under.  I eventually had to stop cleaning because I became (and still am) so emotionally spent that I just can’t take any more right now. 

Here are a few of the things I came across, in no particular order:

• A letter from a cousin, dated four months after my wedding, asking how I was doing and if I was pregnant yet?
• An article on how to keep a marriage alive during infertility
• Two years worth of Pregnancy & Newborn, and Fit Pregnancy magazines
• Four baby name books, multiple lists of my favorite baby names and my family tree- to use to find “family baby names”
• The box that my engagement ring was in when my husband proposed…before we knew how rough the next few years would be
• The multitude of spreadsheets I made to evaluate egg donors
• An old “vision board” made during a workshop at my infertility center (it was fun to make but it clearly didn’t work)
• All of the paperwork ever given to me by doctors about endometriosis, infertility, IUI’s, IVF’s, my husband’s semen analysis, surgical instructions and discharge sheets, and pictures of my insides during the last few surgeries (when stacked, these papers literally go up to my hip…and I’m 5’7”).
• Three journals that I have kept at various times through my infertility journey (looking over some entries, I realize that it might be best to destroy the journals because it hurts me to read the depths of despair I’ve found myself in, in the past…and The Prince and I have been in some tough times, that I’d forgotten about and would prefer to forget about again.)
• Four different types of lubricants that are supposed to be “baby making friendly,” from back in the day when I believed that there was an off chance that we would get pregnant naturally between IVF cycles
• And…the pictures of my embryos from the couple of IVF cycles that actually made it to transfer.  I look at those pictures and it feels like I am looking at pictures of my children who died.  I know that is terrible and I certainly do not mean to belittle the pain of anyone who has had a miscarriage, still birth, or has had a child die at a young age.  I can’t imagine that pain…but I know that I wouldn’t be strong enough to survive it because looking at the embryo pictures makes me break down in tears.  And yet, I can’t bring myself to throw them away.

The truth is, I didn’t throw away anything in this list, except for the email from my cousin and the article on marriage.  I feel like I need to let some of the other things go…like the mountain of fertility paperwork or the journals.  But the idea of throwing these things out makes me panic.  Like I’m giving up on having a baby if I let that stuff go.  Or like the pain isn’t real or wasn’t as bad if I don’t have “mementos” to remind me of how awful it was.  That’s ridiculous of course…there isn’t a day that goes by where I don’t remember how much IF has hurt…but the irrational fear is there, anyways. And it is the same with all of the extra medications and needles I have.  I need to donate them back to the clinic, for people who can’t afford them…but if I let them go, then it is official that I am not trying ever again with my eggs.  I know that is the decision we’ve made, but for some reason, giving away the medication makes it too real.  Now I know why I’ve buried myself with this crap in my bedroom…the alternative is facing down demons I’m not ready to deal with yet.  But if not now, when?

Dream a Little Dream...

As many of you know (because I’ve been complaining about it in all of my posts), I’ve had a cold for a long time.  I finally went to the doctor yesterday and was given an antibiotic and a cough syrup with codeine.  Normally, codeine doesn’t bother me but last night the medicine made my dreams really weird.  And they all involved the same theme – Babies/Pregnancy.  What a surprise!

In one dream, I was living with a lovely couple, admiring and playing with their baby (who was a few months old).  I desperately loved the baby, even though she wasn’t mine and I wasn’t related to her.  Then, for no particular reason, I gave her a piece of popcorn to eat.  Nothing bad happened, but her father yelled at me, saying “What were you thinking?  Don’t you know babies can choke on popcorn?”  Even after he calmed down, I felt so terrible about putting the baby in jeopardy.  I do know better, and I don’t know why I would do something so dangerous.  I kept saying I was sorry, secretly thinking “how stupid can you be?”

Clearly, this dream was about me struggling with the idea that I am not fit to be a mother, and that is why I am not able to get pregnant.  I know that is not the way it works, as is evidenced by all of the people who aren’t fit to be mothers who do get pregnant.  But no matter how many times I tell myself that I will be a good mother, and my infertility is not punishment for some sin I haven’t yet committed, my subconscious refuses to give this idea up. 

In another dream, I was getting my first ultrasound and I went home to tell my husband that I was pregnant (not sure why he didn’t know already, but whatever…it was a dream).  He said “Great.”  Then, he paced the floor and got sweaty.  He kept trying to pick a fight with me and eventually said “I can’t do this.  I thought it was what I wanted, but it isn’t.  I think you should terminate the pregnancy.”  My heart broke as I walked out the door, suitcase in hand, hoping he would change his mind when he calmed down.

That dream was also pretty easy to analyze, but no so easy to go through.  My husband and I have been getting into lots of little quarrels lately.  I secretly am certain that it is because we are close to heading into a new ART cycle.  My husband pushes me away emotionally whenever we start a cycle.  He is more moody than I am when I’m on the meds, but he is oblivious to the fact that he is behaving so badly, much less conscious of why he is behaving that way.  And although I know the constant bickering is about him steeling himself against the pain of another failure, and not about me…it hurts.  And it also makes me scared.  If his fear of what is to come makes him abandon me emotionally when we are just trying to get pregnant, what is going to happen when I actually get pregnant?  Is he going to freak out? 

There’s another way to analyze that dream, too.  Some psychologists theorize that we are actually every person in each of our dreams – every character is just a reflection of a piece of ourselves.  If that is the case, then this dream could also be about me being afraid that when I finally get pregnant and have a child, I am going to find that it isn’t everything I had hoped for.  I don’t ever say that out loud…as if that doubt’s very existence will keep me from getting pregnant.  But I do worry about changing my mind about what I want in life.  Lots of mothers tell me that they had no idea how hard motherhood would be and that as much as they love their children, they might do it differently if they had to do it over.  What if I become that person?  What if I have a baby only to wish that I didn’t have a baby?  Am I capable of that?  And knowing what women go through, what I’ve gone through, to have a baby…could I survive the guilt I would have if I felt that way?

I wish I could be a real fairy tale princess sometimes and just sleep in a deep sleep, only to wake up and find that all of my good dreams had come true and my bad dreams had been dealt with by someone else.  Real fairy tale princesses don’t get terrorized by their own psyche.  Real fairy tale princesses don’t wake up feeling guilty and afraid.  And real fairy tale princess don't have to fess-up, anonymously to friends they've never met, to having horrible doubts and fears.

Overcoming Obstacles

I am awake at 2:00 a.m. again, feeling the familiar crushing feeling of panic in my chest.  No particular reason for it, but it’s there all the same, like a visitor no one invited.  I even worked out yesterday.  Yeah, me…I joined a gym and walked one and a half miles…not much, I know.  But it’s one and a half miles more than I walked the day before.  I thought that would help my sleep, anxiety and weight.  Apparently not so much for the sleep and anxiety, and the effect of walking on my weight remains to be seen.

I find that I frequently don’t know how to overcome certain obstacles…and I’m not even talking about the biggie- infertility.  The little obstacles keep tripping me up. 

In fairy tales, that just doesn’t happen.  The heroes of the tales are faced with challenges and they decisively conquer those obstacles with ease.  What is wrong with me that I can’t do the same?  All of my careful planning and obsessive researching is not getting me over the little hurdles being placed in my way.  I can’t even sleep…that’s not even supposed to be a hurdle.  That’s supposed to just happen.  Then again, so is getting pregnant.

A lot of times in fairy tales, the princess just waits for someone else to overcome obstacles for her, so that she can be saved.  There’s a lot of “deep sleeping” or going about a normal life until the prince comes to rescue her.  If only I could just sleep until I magically become pregnant…leave all of the worry and heartache on someone else’s plate.  Instead, I have to come up with some plan of action (hopefully one that will actually work) and find the strength to implement that plan.  Standing in front of my obstacles, staring at them, is not helping.  Apparently G.I. Joe’s “knowing is half the battle” slogan does not apply to infertility and everything that comes with it. 

I wish my prince would step in and make it all okay.  He has been especially distant since finding out on Friday that we are about a month away from me starting the medications to get the donor cycle going, and less than two months out from an embryo transfer.  I’m scared and I think he’s scared.  I think a lot of my panic comes from the fact that he acts like he isn’t committed to this, after encouraging me to commit, and now it is too late to back out (not that I want to).  I want compassion and encouragement, but I am getting long periods of silence and no physical contact at all.  He always seems irritated with me and if I try to address how he is acting, he retreats even further.  I wish he could recognize his feelings of fear for what they are and work through them, instead of putting up a wall (yet another hurdle) between us at the beginning of each ART cycle.  Then again, I’m lying awake, writing a blog in the middle of the night because I can’t work through my own fears and worries.  So I guess I shouldn’t be doling out the judgment and advice just yet.  Right now, we both need some rescuing.

In A Land Far Away...

I think that the second phrase at the beginning of most fairy tales -the phrase “in a land far away” - is used to distance the reader from the story.  After all, we know that fairy tales don’t mirror the world that we live in.  So if we are going to immerse ourselves into the tale and believe that it is possible, we need a way to explain the discrepancies between our world and the world in the tale.  “Ah…But it happened in a land far away” usually does the trick.

For a long time, I felt like the stories I heard about people getting pregnant must be happening in a “land far away,” because I certainly didn’t see them happening to me or the people around me.  But then one of my friends became that fabled “signed up for adoption after being told she couldn’t have a baby with her own eggs, only to find out she was pregnant” girl.  Another friend became the “failed to get pregnant after multiple ART procedures and then got pregnant naturally while relaxing on vacation” girl.  All of the urban pregnancy myths were coming true around me.  I even had one friend who had four failed IVF’s, then ate copious amounts of pineapple for weeks, and got pregnant.  I could no longer distance myself from the clichéd stories by believing that they were fanciful or that they didn’t happen in my world.  And without the “in a land far away” buffer, I was forced to face the reality that the miracle of motherhood happens everyday, all around me, not just in another place that may or may not exist.

Of course, I am happy for my friends, but their successes bring home the point that others are getting their miracles, while I’ve still never experienced a single positive pregnancy test.  All my pee sticks have only had one line, and I’ve been on vacations and “just relaxed” as much as the next gal.  I even ate pineapple until the song “If You Like Pina Coladas” made me nauseated.  No baby.  Which begs the question, if these great fertility fairy tales are coming true in my world, why aren’t they happening to me, too?

In addition to the self-pity and doubt that comes along with the removal of the “land far away” buffer, the fear of hope is also an unfortunate side effect.  That may sound like a weird statement – why would you fear hope?  But for me, hope has not been my friend in the past.  With great hope comes great disappointment if things don’t work out.  My issues with that go back to my last post, regarding “attachments to expectations.” 

My husband is so practical and logical.  He understands the odds of success involved each time we try a different approach to getting pregnant, and he somehow balances practicality with hopefulness.  He loves hearing that my friends have gotten pregnant after they struggled with infertility.  Somehow I think he figures their unconventional successes in as a factor that increases our odds of success.  I like to think that I am also a logical person, but I cannot achieve the balance that he can.  I throw myself into each ART cycle, each alternative therapy, each “natural” try, thinking that if I can just “believe enough” I will get my miracle, too.  When that doesn’t work, my husband takes the whole thing in stride while I become a blob of emotional goop.  I’ve taken hope to an unhealthy place and I am still trying to figure out where the tipping point lies between optimism and setting myself up for disappointment. 

I guess my ultimate point here is that sometimes, for me at least, ignorance is bliss.  I need the “in a land far away” buffer right now because my fertility journey is in such a scary and uncertain place.  While it is probably better to be grounded in reality, sometimes, when things get too scary or to sad, I need the temporary solace provided by the belief that a fairy tale is simply a fairy tale.