Tuesday, February 5, 2013

The NICU Almost 6 Years in the Making

Today I shared at my Mops meeting our NICU story.  I would like to say that I was able to get it out there without tears, but I think I grieved my way through it.  Letting go of the fact that I will never have that perfect birth story.  Even through the pain, we would not trade our story for what it has given us which mainly is perspective, empathy, and thankfulness.  So here it is followed by our NICU slide show.

June 18, 2007
Finally the end of my school year came, all the last of my precious teaching materials hauled out to my car for their trek into storage.  I had over 6 weeks left of my pregnancy till our little boy would arrive.  As luck would have it my mom delivered both my brother and I two weeks late so by my estimation our son would probably arrive the second week of August.  This gave me some time to relax, visit my new nephew born just a few days before and enjoy the last moments of being a family of two.  After a quick lunch with coworkers celebrating the end of the year, I headed home and spent the evening watching Entourage with my husband.  As he headed out to teach a training class, I started to feel terrible.  By the time he was leaving I was doubled over in pain cursing the Baja Fresh take out choice we had made earlier.  After some excruciating hours, I finally felt better and prepared to get some rest when I felt some water gush.  I had taken a bath and wrote it off to some degree.  Rich returned home and in his infinite man wisdom decided that to top off this already miserable pregnancy , I was now losing control of my bladder. 

June 20, 2007 36 hours later
Wow only twenty minutes of pushing, out our little guy comes.  He is pink and crying, God is good.  I hear the nurses talking, “oh he looks farther along but his lungs are acting like a 34 weeker.”  Okay mom let’s get a picture, so I smile snuggle into my little boy who by all accounts seems so perfectly healthy.  We get three pictures and off he goes on his way to the NICU.  Rich goes along meeting my mom in the waiting room to introduce her to her new grandson Cole. 
I am starving it has been since that fateful Baja Fresh that I have eaten anything, nearly 48 hours.  My mom and Rich are out fetching something from the deli.  Here I sit in my hospital room, a shared one that I have obviously infringed on causing my roommate to shove her stuff off from my side.  I am dealing with the fun of after birth.  The nurse did not have time to explain the care I would need to go through with cleaning myself up.  She just shoved a fun squirt bottle at me with some directions about collecting my urine and gave me some super human pads oh and some great new mesh underwear.  I was alone, bleeding, in pain and somewhere in the hospital was my baby but he was certainly not with me.

June 21 2007
I had spent the night mostly up trying to help my roommate who was in lots of pain and pumping breast milk.  At  2:00, I found myself in the NICUM delivering the tiniest bit of the liquid gold extracted from the pump.  I was able to peek at Cole who was still in his closed incubator connected to wires and tubes.
June 21, 2007
Praises, Cole is out of his closed incubator and in what we fondly call his Rubbermaid crib.  Many visitors visit and we scrub them in to meet little Cole.  I continue to pump and am moved to a new room with another roommate.  They won’t put me up in a single because I have no baby to bed in with me.   Cole is doing well and our spirits are up as we are thankful.  We see the emptiness in the other parents’ eyes and are thankful that it is not us.  Looking around at the signs celebrating milestones such as reaching 2 pounds is a reminder of what this place is for.

June 22, 2007

Before going home, I go to feed Cole and it is time to try and get him to latch.  As the lactation consult  uses her hands to mold my breast to form, Cole screams bloody murder and I realize why so many moms decide breast feeding is not for them.  It is hard, but this is the thing I can do for my little guy .  Right now I can pick him up to feed him every three hours and feed him on their schedule.  We leave the hospital empty handed, but according to the nurses he should be out in a day or two, so I’m alright to go home and get ready for his sudden arrival.

June 23, 2007

My mom heads home and so begins the routine of going back and forth to the hospital.  Cole has an apnea scare and for now I am glad he is hooked up to monitors, because I would have not seen that happen at home.   The nurses in this area of NICU are top notch and very attentive, ratios are low so we get loads of attention.

June 24, 2007

We arrive expecting to find Cole in his spacious area of the NICU, but when we walk in he is not there.  Instead we find him in a new section smashed in with many other babies and one nurse.  There is not the usual bright and happy feeling but one of overwhelmedness that greets me.  He should be out soon according to yesterday’s nurses so I swallow back the tears and try to feed him on top of everyone else.  We return later that night and he is moved yet again.  In fact we can’t even find him at first, he has officially became a number and our care has changed.  So begins our feeding protocol nightmare, where he must take 2 ounces every three hours. 

June 25, 2007

So begins the daily trips back and forth to the hospital.  Cole has decided he will breast feed but will not take a full bottle.  Unless he takes the majority of his feeds fully orally each day he cannot go home.  He should have been home by now but instead they are calling him a lazy white boy.  I continue to breast feed in a timed environment where I must weigh my child before and after.  I am tired from all the back and forth, hungry because there is no food in our house.  My solace is the Ronald McDonald room where I shed a few tears and eat boxes of their cookies.  We continue to make trips back and forth to Target trying to find a bottle Cole will take.  They sell milk at Target so we buy that and some cereal and this becomes are main source of nutrition. Cole has developed a severe diaper rash after sitting in poopy diapers since he is only touched every three hours.  It is bleeding and we are trying to find something that will help him heal.

June 26-June 30

We look like those parents who were zombies.  We are so hungry but can’t manage to do anything beyond pump, visit Cole, catch naps and just pray he gets out soon.   When we get a good nurse, it makes all the difference for the day we have.  Rich has taken to trying to squeeze the bottle nipples to get those ounces in, but he just is not interested in the bottle.  We enjoy bringing in gowns that he can wear with his wires, special blankets to swaddle him in and bring in pictures to hang in his container.  A huge blessing happens when one of the teachers from the other school in my district made us a meal and brought it over.  Real food, we made it last two days and felt great getting nourishment!  Her husband is a pastor and she also gave us a children’s Bible for Cole.  A blessing in the storm.

July 1st

Cole is by now one of the biggest babies in the NICU and shows no sign of getting out.  We start to watch the babies that were struggling almost two weeks ago start to go home, but we are still here.  It is a bitter sweet feeling.  I thank God that Cole is healthy; he has not showed any signs of having any medical problems since his apnea incident.  He is eating, just not enough for his size, so the remainders of his food is given through the tube in his nose. 

July 2nd

Cole really prefers to be breastfed and I start to question the nurses about an alternative plan.

July 3rd

As I walk through Target for the latest of the newest bottle to try, I want to scream out to the other people.  I have a baby you know, I am a mom but who could even tell.  I have walked the majority of my baby weight off going in and out from the parking lot and up and down the stairs each day.  We have come to learn to avoid the elevators with the happy family members getting ready to meet their new babies.  We glimpse at the moms being wheeled out of the hospital, heading home but have figured out an exit off to the side that we can use instead.

July 4th

They finally concede that they will no longer make Cole meet their feeding criteria to go home.  One of the doctors has agreed that she will not watch exact  cc’s. s but look more for him to take solid feeds. 4th of July parade and fireworks are today, we are invited out but can’t bear the thought. We take some pictures of Cole in a festive onesie.  They have Cole complete the car seat test, hooray.  Means we are getting closer to home.  This predicted 4 day stay has turned into 14 days.

July 5th

Day 15 I get a call while Rich is at work.  Come pick up Cole.  What??  Rich rushes home from Camden and we prepare his outfit.  We arrive and get to dress him wireless. He stays wireless as he gets his last feed and photo taken.  Then I get wheeled out of the hospital with him in my arms.  Yes after walking in and out of the hospital about 30 times, I am now leaving in a wheelchair with my precious 7 ½ pound preemie boy!  We head home take pictures and order lunch.  Somehow we can think again, eat, take care of ourselves, and our baby.  Everything is alright.

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