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.