“My World Turned Upside-Down”

In Uncategorized on March 22, 2011 at 10:04 pm

Part 2:  continued from my previous post about my, now healthy, daughter’s illness.  This is how it all began.

After three months of being on restricted activity, my daughter was born without complication.  Everything was fine, and she seemed perfectly normal and healthy. The day we were discharged from the hospital, I noticed she started to look a little yellow, jaundiced.  This is common in newborns, and the doctors nor myself were too alarmed. This had happened with my son as well, and it was no big deal.  I knew she was most likely going to need light therapy at home, just like my son did, and in a few days she’d be just peachy.

So, we were sent home and were scheduled to have the light therapy blanket delivered, and a visiting nurse to come daily to check on me (due to my c-section) and my daughter.   We were all adjusting, and my 2 and a half year old son was doing surprisingly well.  He loved his baby sister immediately.  We had also just moved into our new house only two months prior, so he had so many changes thrown at him.  He was such a trooper!

The first few days went by just fine.  The nurse came daily to check my daughter’s bilirubin levels to see if the light therapy was working.  Things were going slowly.  She seemed to be hovering around the same number for days.  Up a point one day, down a point another.  It was taking longer than it did with  my son, but I still wasn’t too worried.

Then one night, she seemed a little more sleepy than usual.  Even a little too tired to feed.  I started to feel a little uneasy, but made it through the night.  By morning, I had a gut feeling that something was wrong.  I called my pediatrician and they had us take her to our local hospital to have an immediate test of her bilirubin level, since the nurse wasn’t due to come until late afternoon.  Now I’m trying not to worry too much and remain calm.

We got back home, and within an hour my pediatrician called with the results and to tell us that we had to take her to the hospital immediately. Her levels had spiked to a dangerous level, a level that could potentially cause brain damage.  They had called ahead, and the hospital would be waiting for us.  What?!  Now I’m feeling dazed, and nauseous, and panicked.  They re-assure us that things will be o.k. and she just needs stronger, more constant light.  But my motherly instinct has been telling me something different since the night before.

We quickly make arrangements for my son to go to my brother’s house.  I feel awful, and anxious for him.  Before our recent move, we lived over an hour away from family, so to my son, my brother and his family are still strangers to him.  And here I am just sending him off so quickly with no time to soothe, or explain it all to him.  My brother arrives in minutes to pick him up, and I’m throwing things in the diaper bag to take to the hospital.  At this point, my husband and I are moving in silence.  Worry and stress are starting to smother us, and now I’m in tears as I hand my son to my brother, and put my daughter who seems to be glowing yellow now into the car seat.  My brother tries his best to comfort me, but all I can hear are the doctor’s words; hospital, emergency, brain damage.

On the ride to the hospital, I barely manage to pull myself together.  The doctor is very nice and she helps to put me at ease a little.  She’s a mom too.  Although she does remark that she doesn’t think she’s seen a baby so yellow before.  She assures me that everything will be o.k., but that my baby will have to stay for at least one night.  My husband and I decide that I will stay with her, and he will go back to my son.  This makes me feel better that at least he will be o.k. with his Daddy.  We say our goodbyes, and the nurses bring me something to eat.  Meanwhile, they keep popping in to check vitals, etc. on my baby.  At some point, I get an uneasy feeling after the fourth or fifth time within minutes that a different nurse comes in to check the same things.  Now the doctor comes in again, and explains that they need to run a more detailed test on my daughter’s oxygen levels, and she has a more businesslike tone to her voice.  Now I’m starting to panic again, but trying to remain calm.  As I watch them hook her up to more wires and place a clear plastic looking box over her head to test her oxygen levels, I start to lose it a little and start to quietly cry.  What is happening?  Within minutes the doctor returns to tell me, and I feel like I’m on the top of a roller coaster ride on its way down.

“Your daughter’s oxygen saturation level is low.  For reasons that are unclear at this moment, it seems that her red blood cell count is low causing her oxygen level to drop.  We feel we’re not equipped to handle her case at this hospital, so I’ve called Children’s Hospital and made arrangements for her to be transferred there, in order to receive the best possible care.  They are sending a specially equipped ambulance.  You need to call your husband to come back.  You can follow the ambulance there.”

I almost feel like I’m out of my body.  This can’t be happening.  I know this is serious if the only place able to care for her is the Children’s Hospital of Philadelphia (CHOP  for short).  It’s the best in the country. This is serious.  I call my husband, and have to tell him twice.  He is shocked and confused, just like I am.  He had just arrived at my brother’s and now has to tell my son he’s leaving again.  After he arrives at the hospital, we have to wait a few hours for the ambulance to arrive.  By the time it does and they hook her up and place her in the special incubator, it’s 3 a.m.  We are literally exhausted, and on the hour-long ride behind the ambulance, we have to open the windows all the way help keep alert. Am I dreaming?  No, this is all happening.  And through it all I keep worrying about my poor son too.  He’s never spent the night away from us before, I hope he’s o.k.   I cry the whole way.

We arrive at CHOP, and she is admitted to the Neonatal Intensive Care Unit.  Doctors and nurses are all around my daughter.  They are all extremely nice, and the nurses are concerned about me as well since I’m recovering from a c-section.  The doctors do their best to try to explain what they think might be going on, but they really don’t know at this point.  They of course will have to do some testing, and assure us that they will figure it all out.  They ask if I want to try to nurse, and help me get comfortable with all of the wires attached to my baby girl.  It seems she’s too exhausted,  and doesn’t have the strength.  So they get me set up on a pump.  They insist that my husband and I try to rest and set us up in a small meeting room since all of their parent rooms are full at that time.  We are reluctant, but they insist they will get us right away if needed.  We both get a recliner, and I think we literally passed out for a couple of hours.  I woke first.  It wasn’t all a dream, this nightmare is really happening.  As we made our way closer to our daughter’s crib, I could see the doctor there, and the nurses alerted him to our approaching.  He started talking as soon as we walked up but I couldn’t hear him right away.  All I could see was my baby, with a tube in her throat and a huge black mouth piece over her face that looked like scuba gear.  What is happening?  This feels worse by the second.  He explains that they needed to give her some extra help getting enough oxygen and breathing.  She went into distress, but they have her stabilized.  They had to work quickly, so there was no time to wake us.  They don’t say it directly, but I know what this means, my baby girl almost died.  I am again in tears trying to listen to the kind doctor.  We stay and answer more questions about family history, etc.  and ask more questions of our own.  None of which can be answered at this time.  They will continue with more tests, and insist that we go home for a few hours to our son, and try to get refreshed.  They keep re-assuring us that she is stable now, and they will call immediately if there are any changes.

My son, we go pick him up from my brother.  Poor thing.  He didn’t sleep much either, and neither did my brother.  It does my heart good to see him.  He’s so good, and so confused about what is going on.  I’m already dreading having to leave him again in a few hours to head back to the hospital.  I now know what it feels like to have your heart truly split in two.  I ache to leave my daughter, and I ache to leave my son.  When we get home I lay on the couch with my son, and he almost instantly falls asleep in my arms, and I doze off for a little while too.  I needed to hold him, and I needed the sleep.  Then the phone rings.  It’s the hospital. They have done multiple tests, including brain scans, but now would like our permission to do a spinal tap.  Oh my God, I can’t take this.  My poor baby girl.  I’m aching for her poor teeny tiny body, and what it has been through in the past 24 hours.   I try to remain calm on the outside for my son’s sake, but on the inside I’m literally in pieces.  I get myself in the shower before we head back to the hospital that we just left a few hours ago.  I stand there sobbing, but no tears come out.  Just painful sobbing from my gut.  I’ve never had emotion like that before.  I am completely consumed by fear.  A fear that cannot be described with words.  My body and soul are saturated with it down to the core.  What if I lose my baby?  This is my reality.  My world has been turned upside-down.


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