“My Life Turned Upside Down”, cont’d

So back to the hospital we went, not ever knowing what to expect when we got there.  A constant state of unknown.  Not a good place for a control type person like myself.  By the time we arrived, they had finished an array of testing including the spinal tap.  They explained to us that they were ruling out some possible causes for my daughter’s decline, internal bleeding, meningitis, and so many more that I can’t even remember.  What they did know at this point was that after carefully examining smears of her blood, she had distorted and irregular shaped red blood cells causing the anemia.  Without getting too technical, basically the spleen acts as a “filter”, treating these cells as abnormal or old and breaks them down, causing the red blood cell count to drop.  Since red blood cells carry oxygen through the body it also drops oxygen saturation.  Frightning.

They explained that they would have to keep monitoring her counts closely, and that a blood transfusion may be needed.  There were two possible causes of this condition;  Infantile Pyknocytosis which is a rare form of hemolytic anemia in newborns.  The cause of this condition is unknown, and usually resolves on it’s own around 4-6 months of age.  Or, Spherocytosis, a more serious  life-long disease of the blood, in which red blood cells are shaped like spheres causing anemia, and at times requiring transfusions.  It would take a year for us to get the final diagnosis of Infantile Pyknocytosis.  A very long year.

In the meantime, my husband and I underwent genetic testing, and keeping vigil at the hospital.  After a few days, she did indeed need to have a blood transfusion.  Of course my worries multiplied with this news, even though I knew she needed it to survive.  What if she contracted something from the blood?  We’ve all seen the sad stories on T.V.  My head was a constant tornado of scenarios and “what if’s?”.  I again had to place my trust, and my daughter, in the hands of her re-assuring team of doctors.  That’s right, I said team.  This condition brought so many doctors to look at her case, not to mention the crowd of students and interns that usually followed them.  All asking questions, wanting to learn.

She received the transfusion, and started to improve dramatically.  She “pinked” up, and was getting stronger.  Now we had to wait and see if her new batch of red blood cells level would stabilize.  After a week, we were headed home.  I was elated and almost paralized with fear at the same time.  Even though I hated leaving her in the hospital every day, at least I knew if anything happened, she was there, with the best nurses and doctors at her side the second she needed anything.  She was hooked to monitors telling you at a glance what her heart rate, and oxygen levels were.  How would I know all of this at home?  How would I be able to sleep without worrying that something would happen while she was sleeping.  Fear, fear fear.  The symptoms that I was told to look out for didn’t help ease my fear at all.  I had to watch her to see if she started to seem lethargic and sleepy.  Aren’t all newborns sleepy?!?!  Check the whites of her eyes for yellowing, again, not easy on a newborn.  Check fingernails and palms of the hand for pinkness.  So tricky with a baby that isn’t able to communicate.  How was I going to do this?

We also had to go get her blood drawn regularly.  For the first few days, everyday.  Then every other, then once a week, etc.  Her little tiny heels had so many cuts in them.  You can still see the scars today.  I’m so grateful to one technician at the lab we went to.  Drawing blood from an infant is somewhat of an art, and she was the best.  So calm, and quick.  When she would see me coming, exhausted with my daughter and toddler son, she would drop what she was doing and help me.  If someone else working started to take us to the back, she would say, “It’s o.k., I got this one.”  And I would thank God every time I saw her face.  Then I would go back home and wait on pins and needles for the Doctor to call with the results.  Every day.

After only a few days at home, things seemed to be going o.k.  I was starting to get into the routine of it all.  Then, I got the call.  ”We have your daughter’s blood count for today, and it seems she’s going to need a little more “hand-holding” than we thought.  She needs another transfusion right away.  Come back to the hospital and go to the emergency room.  We’ll work on getting her admitted.  Hopefully this will be the last one.”  All I could say was o.k.  I felt like I’d been hit by a truck again.  My son was calling for my attention, and the doctor was still on the line.  He was trying to keep me calm even though I wasn’t saying anything.  ”Everything will be fine”  he kept saying.  Fine?!  How is everything going to be fine?  How did this happen without me noticing?  She didn’t seem to show any of the signs I was told to look out for.    We are headed back to the hospital.

I hung up the phone, and tried to concentrate, all the while my son is pulling at me, “Mommy, Mommy!”  My throat was hard, swallowing back tears as I called my husband at work.  He was on his way home immediatley.  My next call, my Mom of course.  She was at work as well.  Now the tears can’t be held back anymore, and all I remember saying to her was ” Mom, I’m so scared!  I’m so scared! We have to go back.  I’m so scared.”  I can’t even remember who came to take care of my son while we left.

The ride to the hospital was silent.  I sat in the back with my daughter, staring and quietly crying…again.  We arrived and went to the emergency room as directed.  Even though they knew we were coming, we wound up having to wait for 7 1/2 hours until they had a place for us. They were all very kind, but all I kept thinking is, my baby needs blood and we’re just sitting here!!  They finally put us back in the Neonatal Intensive Care Unit, for which I was grateful.  We knew all of the staff there already.  They were all surprised to see us again.  We stayed while she received the transfusion, it was very late at night and we didn’t leave until the early morning hours.  It was hard to leave her again, but we had to get home to my son.

Once she stabilized again, she was discharged.  Home again, and more of the same.  Blood draws, waiting for results, obsessive checking of her skin color, fingernails, eyes.  I would go into a silent panic anytime she seemed to sleep a little longer than her usual routine.  One morning, I couldn’t wake her up.  I tried to remain calm as I did everything I could think of to get her awake, diaper change, clothing change, everything.  I couldn’t get her to become alert, and she had even skipped a feeding.  We called the doctor right away and they sent us to our local hospital for blood work.  Her levels came back slightly low, but they weren’t concerned.  Turns out she was just having one of those sleepy infant days.   Day in and day out this was my life.  I don’t think I slept soundly at all in that first year of her life.  I spent many nights laying in bed staring into her bassinette.  I would reach in an touch her, just because.  I lived in a kind of daze most of the time.  My mind never really 100 % in the moment.  When the blood draws slowed down to once a month, and longer we would have to go back to C.H.O.P. to have it done.  They would take a little more than when her heel would be pricked, because they would also look at it under the microscope for abnormal cells.  I dreaded it.  Everytime we went, it took me right back to the time we spent there.  All the worries were fresh on the surface again.  Not to mention, they would draw from her arm now.  The technicians were wonderful, gifted people.  But, that doesn’t make it any easier to hold your screaming child still in your lap while they find a vein.  My husband was amazingly strong and positive through everything, but he came in the room with me the first time they did that, and he had to leave.  He never came in the room with me again.  It was too hard, especially the older she got.  She would be smiling and happy one minute, and then look at me screaming with an expression of “why Mommy?” on her little face.  She would try to turn and put her arms around my neck, but I had to hold her down to keep her arm still.  I would try to hum “You Are My Sunshine” in her ear to calm her.

I also have to mention that the Hematology department shared a floor with the Cancer department.  I can’t tell you how my heart ached seeing the other families there for blood tests, whose situations were so much more grave than ours.  What results would they be getting from their child’s blood work?  Heartbreaking.  My husband and I would come home completely wiped out.

As time went on it was looking more and more like it was resolving on it’s own.  A few weeks before her first birthday we finally got the official diagnosis of Infantile Pyknocytosis.  Hard to express what that day felt like.  Of course complete joy, but I have to say it was a cautious joy.  I wanted to hear that this would never re-occur, but I quickly learned that never is a word that doctors rarely use.  Since the cause of this condition is unknown, they won’t say that it will never happen again, believe me I tried to get them to say it.  What they did say is that they would be completely shocked to see a re-occurance, and that they hoped to never have to see her again.  But of course if we ever noticed any symptoms, we should have her checked.  There’s those pesky, vague symptoms again!  If you know me, you might still catch me looking at her fingers and eyes closely.  Whether this is just habit or something else, I don’t know, but I catch myself doing it.

The most important thing about this story is that my daughter is now a healthy, active little girl.  She’ll be five years old in two weeks.  Time seems to have gone by in the blink of an eye.  She is beautiful in every way.  She’s shy, but don’t let that fool you!  She is stronger and smarter than I’ll ever be, which I believe is what got her through that whole ordeal.  She was sent to me for a reason…many reasons, and she makes me a better person every day.  I am eternally grateful.

My hope is that by my sharing this, I may be able to help someone else who may be experiencing a similar situation.  Even if it’s only by acknowledging the multitude of emotions that one may experience in these types of situations, thereby validating them in some small way.  Sometimes you can only process them all after it’s  over.  I hope they are able to find their own peace.

I also have to mention how grateful I am to the amazing people in the nursing and medical field.  I don’t know how they do it on a daily basis, and I have the greatest respect and admiration for them all.  They are angels to me.  I made a promise to myself that someday when my children are a little older, I will go back to the hospital to volunteer.  It is a promise I am determined to keep.

This series of posts was difficult for me to write, but I’m so glad that I did.  I’ve given it all it’s own place.  Now, it’s time to move on, clear away the rest of the daze that was remaining and become truly present again.  Back to living, and soaking in every moment with my “little sunshine”!

“Plain Jane Goes Glam?”

I consider myself to be somewhat of a “Plain Jane”.  Not really a risk taker when it comes to fashion (although I’d like to be), and an outfit “saver”.  You know, I’ll “save” certain outfits or jewelry for a night out or a special occasion.  It’s funny because I have these grand images of myself (in another life perhaps), where I’m dressed in the most stylish outfits with killer shoes and jewelry.  I’m oozing confidence, kicking ass & taking names.  I’m just another Angelina Jolie, looking fabulous, taking care of my babies, saving the world, and heading home to my hot hubby (I do actually have the hot hubby part, I must say;) ).  All in a day’s work.  Ha! Ha!

Image via Wikipedia

Now in REALITY, my daily wardrobe consists of sweat pants, more sweat pants, jeans, sweaters, t-shirts, tanks, sneakers, imitation Uggs, silver hoop earrings, & my wedding rings.  You get the picture…boring!  My idea of mixing-it-up is to wear my oval hoops instead of round, because  you know, I’m “saving” my other stuff for a special occasion.  Yikes!  I recently read a quote somewhere (can’t recall where) that said, “Burn the candles, use the nice sheets, wear the fancy lingerie.  Don’t save it for a special occasion.  Today is special”.

I totally agree with, and “get” this idea and I’ve expanded it for myself into even everyday clothes, to try to get myself out of the sweats & jeans rut.  I do struggle with the practicality of it though.  I’d just feel silly at the bus stop, or grocery store in heels all glammed-out with jewelry.  Or better yet while scrubbing toilets at home!  So I’ll start small, after all, baby steps are the way I operate.  Maybe some more color in my wardrobe, or dress-up Fridays (no matter what’s on the daily agenda), or maybe some pretty unmentionables under those sweat pants on a not so special day…I know, too much information, but you get the idea!

So if you see a crazy looking gal at the grocery store wearing sweats and lots of bling, you won’t have to wonder, “What was she thinking when she got dressed this morning?” because…I just told you:)

“My World Turned Upside-Down”

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.