Experience the Mission...Part 3

(This final post about my experience at Cook Children's will make more sense if you've read Parts 1 & 2 from previous days.)

My final rotation of "Experience the Mission" was in the Neonatal Intensive Care Unit (NICU).  The NICU at Cook Children’s is currently the only one in the United States with all private rooms.  I was thrilled to be able to visit the new NICU for a hard-hat tour last summer when it was under construction, but I hadn’t been back since it recently opened.  It is a beautiful facility and very special in that it allows parents to be so close to their premature babies 24-hours a day.  I was expected the wing to be bustling with activity, but it was tremendously quiet.  I don’t think in the hours that I was there that I ever heard a baby cry!  Those must be really happy babies! 

Almost immediately upon walking in, I had a baby in my arms!   Precious, sweet, adorable Baby L.  I’ll never forget him.  I had been joking with everyone after my surgery rotation, that I had decided my next perfect job would be as the “air traffic controller” of the big, white surgical board – walkie-talkies in hand, directing surgeons from one operating room to the next.  As soon as they handed Baby L over to me, though, that was it…I became a lifetime member of the NICU Baby Rockers.   He was born at 32 weeks, and I can already tell you that he’ll be a ladies man. 

My guide for the NICU was Dr. Grubbs, a father of 4 boys, so we had lots to talk about!  He was so sweet to allow me a very nice long break in sitting down and holding onto Baby L before we began our rounds.  Room by room, we walked, with Dr. Grubbs telling me about each baby – how early they were born, what kind of complications they were experiencing as a result of their premature birth, what complications would follow them throughout their lives.   He drew me diagrams of the surgical procedures that each baby would have to go through to correct complications and I was fortunate to be able to see one of the infants from my surgical rotation, back in his room and doing well from the morning operation. 

Not many people know that I had a high-risk pregnancy.  My son was “supposed” to be born early, based on information that doctors had about my own medical history, and I carefully selected a hospital for the birth, knowing that they had NICU ready to handle whatever complications might arise.   Thankfully, my son chose to do things his own way, and he arrived one week past his due date with no complications.  I spent most of my pregnancy, though, anticipating and preparing for an early delivery and had educated myself about the complications of premature babies.   Walking those NICU halls with Dr. Grubbs at Cook, I knew the details and descriptions about the complications, but going room to room and seeing what those complications actually looked like, was eye-opening, scary, and emotional.   I found myself quite frequently realizing that it could have been my son in there. 

More often than not, the babies were in the rooms with nurses, not parents.  When I asked about this, it was a very simple answer.  Mom and Dad are at work; they need to take their time off when the baby gets to come home from the hospital.   Some of these babies have been in the NICU since August/September…born so early.   There were several new babies to the unit, just a few days old…one born at 25 weeks, another born at 26 weeks.  I can’t begin to tell you how tiny these precious children are.  If they could have come out of their little beds, they would have fit in the palm of my hand.   If you ever wonder if life is fragile, just visit a NICU. 

I met two mothers during our rounds.  One of them so excited that her baby would finally get to start trying to eat the next day; the other, a beautiful young mom, who knows that her baby will probably never leave the hospital.   The more we walked around the NICU, the more pieces of my heart I left there. 

I hope to meet Dr. Grubbs children someday.  I imagine that they are frequently hugged little boys. 

When Lesley came to pick me up from this final rotation, I didn’t cry.  It wasn’t because I didn’t want to.  I think I had actually reached that “deer in the headlights” phase when I just couldn’t take any more in.  I had just been through 10 hours of seeing so much, hearing so many stories, watching patient’s reactions, seeing the looks on parents’ faces, just too much. 

We went to the evening “wrap-up” dinner.  I was happy to see my friend, Lee, but could tell from the look on her face, that her afternoon had been equally as emotional.  Her time in the laboratory had been highly-scientific but with sad, devastating medical findings; and her patient interactions in child-life had left her with the many of the same emotions I had felt in the NICU….”this could have been my child.”

Thankful to sit with a glass of wine, I looked around the table at my dinner companions who were all there in support of ME.  Dambro, Dr. Murray, Dr. Grubbs, and wonderful Chelsea; my good friend, handler, and cry-buddy Lesley; Geraldine, a partner through the hospital Foundation; and Larissa, a previous ETM participant, who is now the “cheerleader-chief” of the NICU Baby Rockers, and another Cook fundraiser with her own successful benefit event.  I was overwhelmed and humbled by the time that each of these people had given up so that they could make my experience so positive, so personal, and so educational.   We were asked as participants to share a few of our thoughts from the day as dinner ended.  And, for those of you who know me well can imagine, THAT is when I started to cry…and (shockingly!) I was nearly speechless.    I think I managed to get out a few sentences to that room of 100+ people, but nothing near the magnitude of what I actually wanted to convey.

  

The truth is, I still don’t think I can accurately convey what this experience meant to me.  They leaders of “Experience the Mission” hope that we take away all we saw, and learned, and felt and put it back into Cook Children’s in some way.   I’m not sure what my way will be yet.  I’ll be back soon to rock preemie babies as often as possible and share some love with these precious new lives; and, of course, I’m still deep in planning for Dress 4 Yellow, which benefits the Hematology/Oncology Department of Cook Children’s in April 2012.  But, that’s not enough for me…not anymore.  I have a deep desire to do more.  I’m just not sure what “more” is yet.  I know the answer will come at the right time and I’ll know it when it happens.    

So, for now, I’m holding onto the emotions, smiles, tears, amazement, and wonder, and miracles that I saw during my time at Cook and am cherishing the deep appreciation that I now have for the complexities of that magical place.  And, I’m remembering one of the great statistics of the day:  children ages 2-14 make up 24% of our population, but 100% of our future.

I got home before my son went to bed that night.  We shared a hug that I will never forget.  I held him a bit too long, and when he complained and tried to wiggle away, I ignored him and held on tighter.

Experience The Mission...Part 2

(If you missed yesterday's post, you might want to read it first or this one won't make much sense...)

My second rotation of “Experience the Mission” was in Pulmonology.   I didn’t know much about pulmonology before this experience.  I knew it had to do with lung diseases, but I had never stopped to think about how diseased lungs can alter so many other parts of your body.  Dr. Nancy Dambro had a profound impact on me in a very short period of time.  She is a no-nonsense physician with a wealth of experience who deals with families so compassionately and takes time to educate with each explanation she gives.   

She had advised me the night before our rotation that our first consultation might be difficult and that the family might not want me to sit in as a participant.  When I arrived, she was already in the middle of meeting with the family and they had agreed to let me observe.  I’m not sure this was actually a good thing.  Dr. Dambro and her colleagues in the Pediatric ICU were meeting with the parents of a very sick 6-month-old boy and discussing surgical options with them that would drastically alter their son and his home life for the next two years.  It was an emotional conversation with pain on both sides – from the doctors who are fighting to save this boy’s life and from the parents who are scared, worried, and having to face great obstacles.   The hardest part of the “Experience the Mission” program is that I don’t know – and won’t know – what ultimately happens with that little boy.  I don’t know when his surgery will be or if his Dad will be able to get the day off of work to be at the hospital or how they will financially afford the home nursing care that their son will need when he is finally able to go home, months from now.  What I DO know, though, is that little boy is in tremendous hands and that his doctors are in his “fight” alongside him for the long haul.   

We left that family meeting in the Pediatric ICU to go to the surgical recovery area, where Dr. Dambro was paged for a consultation.  I started getting the impression that the pulmonologists are really all over the hospital, all the time.  They are called in for anything having to do with the lungs, which when you actually stop to think about it, is a lot!  Patients coming out of surgery with reactions to anesthesia, asthma-related issues, cystic fibrosis, pulmonary hypertension, apnea, obstructed airway issues, lots more than I had ever stopped to think about.   We spent time seeing patients in the Pulmonary clinic, one in particular who now weighs heavily on my mind and heart.   This 14-year-old boy has cerebral palsy and severe mental retardation.  He was visiting Dr. Dambro with his widowed-father to get clearance for an upcoming back surgery.  What should have been a very routine appointment became a very serious consultation as advanced lung-related issues came to light.   I can’t go into the details of this special patient or his family situation, but they made an impact on me that I will never forget.  And the very private conversation that Dr. Dambro and I shared afterwards about ethical decisions in our society is something I will never forget. 

I don’t mind admitting that I thought my pulmonology rotation would be my “easy” rotation of the day, but in fact, it turned out to be the one where my heart was impacted the most and truly altered the way I will look at several situations going forward.  I held my breath more during my pulmonology rotation than I did at any other time that day…appropriate considering that Dr. Dambro would be the most qualified to revive my lungs if they gave out on me.  Lesley arrived on time to pick me up for lunch, tissues in hand…thank goodness.

I don’t think I’ve ever inhaled a baked potato as quickly as I did that day.  Comfort food.  Exactly what I needed at that moment.  Our brief lunch was a nice chance to catch-up with the other 9 ETM participants and hear the amazing things they had seen that morning.  Lee proudly passed her brain and heart surgery photos around the table while we all sat there eating, and it didn’t seem to phase any of us!  We were considering ourselves real “pros” now!

I was anxious and excited to start my afternoon with my friend Dr. Jeff Murray.   Jeff is the reason I started fundraising for Cook Children’s.  His neuro-oncology program is doing fantastic work with pediatric brain tumors.   And I knew that seeing him in his environment, surrounded with his work and patients, would add more fuel to my fight to contribute to the tremendous work being done in pediatric oncology.   Jeff is not only a brilliant physician, but he is also a great educator.  Prior to visiting any of his patients, he spend time going through their histories with me, showing me scans of their tumors and how they had progressed through treatment.  He went in-depth in his explanations of how specific treatments affected other areas of a patient’s growth and development.  But, in the midst of all his medical jargon, he never missed a chance to give me personal details about each patient – about their family, their hobbies, their personalities.   These are the reasons I admire Jeff so much.He KNOWS his patients so well and his interest and care for their well-being in ALL facets of their lives comes across so clearly and with such heartfelt emotion.  

I was honored to be able to visit with an inspiring 14-year-old cancer survivor and his amazing mom that afternoon on the one-year anniversary of the end of his treatment.  With clean scans to report, there were many happy tears in that consultation.  I was so determined to NOT cry in the room with the mother and this strong young man, that I literally was biting my tongue to keep the tears from flowing.  Poor Jeff….he had no idea what a basket case he was getting when he invited me in to observe!  Thankfully, I held it together.   And, I’m pleased to report that I didn’t even flinch when I sat alongside him for a spinal tap on a precious little girl.  We had another patient consultation with a 17-year-old who has a brain tumor, but has never had brain surgery….very, very rare!  And HE is a very special young man, as well, who wants to be a doctor like Jeff when he grows up.  His bright, hopeful smile made a permanent mark on my heart.  

My favorite part of my time spent with both Dr. Murray and Dr. Dambro were very special conversations when they shared their own human struggles and emotions that they experience when dealing with patients and their families…the “timing” of sharing information and the emotional toll of losing patients.  It’s not a secret that Doctors go through their own emotions, but I felt really honored that they would both share these personal thoughts and experiences.  It really meant a lot to me.  The magnitude of the work they do each day in healing children is tremendous, but the emotions that they experience in the process must be sometimes unbearable.  I honestly don’t know how they do what they do each day, but I am forever grateful that they allowed me to see inside their hearts and shared so freely with me. 

By the time Lesley arrived to take me to the Neonatal Intensive Care Unit (NICU), I was really getting tired.  Not physically…emotionally.  I had already seen so much and experienced so many highs and lows, but one more rotation to go.  Plus, I was really (really, really, really) hoping they’d let me hold a baby!   It has been a while since I got to do that and there is nothing sweeter than a baby!  It didn't turn out to be as simple as that, though.....

More tomorrow....

Experience the Mission...Part 1

This week, I had a life-changing experience.  Even now as I sit down to write about it, I’m unsure of the words to use.  I’ve tried to tell 3 different people about the things I saw and the emotions I felt, but the words just don’t seem to do it justice.  There just aren’t words for something that impacts you in such a profound and lasting way. 

Let me set the scene:  “Experience The Mission” is a program at Cook Children’s Medical Center in Fort Worth, Texas.  The Foundation of the hospital invites ten community leaders/fundraisers/parents to “experience” what happens at Cook on a daily basis through the eyes of doctors, nurses, child-life specialists, educators, patients, and their families.   Each ETM participant (that was me!) is assigned 4 rotations where you are the “shadow” of your guide for several hours. 

The event opened Wednesday night with a welcome dinner.  I was excited to get my scrubs, find out my rotations, and dive deep into the workings of the hospital.   I wasn’t expecting it to be all “Grey’s Anatomy” since we were at a Children’s hospital, but the excitement of the procedures and the rare opportunity to be behind-the-scenes filled me with adrenaline.   Attending the welcome dinner, in addition to the 10 participants, were the doctors, nurses, staff members who would be our guides.  Also attending were executives of the hospital and past-participants of “Experience The Mission”.   It became very clear to me, very quickly, that A LOT of people had set aside their personal and professional time to give to this program, and to ME as a participant.   As I began to listen to one man speak of his previous experience, I started to realize that this truly was going to be a lot more than watching surgeries, seeing different areas of the hospital, and maybe getting to hold a baby or two.   He gave great advice to us as the new participants:  leave your cell phone in the car; eat breakfast; be prepared to go home and hold your children like you’ve never held them before; truly take in this experience and cherish the amazing medical center that we have here in our backyard; and don’t be a “dropper” in surgery…make sure you “lean against the wall and slide down instead.”  

  

I was fortunate to be able to bring a friend with me for “Experience the Mission” – my fundraising partner-in-crime and dear friend, Lee Nagel, was also going through ETM this week, so it was nice to have her in the car for the ride home to joke about how silly we would look in scrubs the next day, to read over our rotation schedule, and to wonder if any of the male participants would faint during surgery. 

Early, early the next morning, we arrived back at the hospital, ready for the day ahead!   I would be spending the morning in surgery as well as shadowing a veteran Pulmonologist, who has been at Cook for 24 years.   After lunch, I would have time with my good friend, Dr. Jeff Murray, who heads the Neuro-oncology department of the Cancer center, before finishing off my day in the NICU – Neonatal Intensive Care Unit – with all those precious, preemie babies.

For her rotations, my good friend Lee would be starting in the Hematology/Oncology department – very close to Lee’s heart as a 7-year cancer survivor – before her own rotation in Surgery.  Lee’s afternoon would be spent in the Laboratory and then with a Child-Life Specialist.   (Quick side note here:  the child-life specialists play a critical role in patient care.   They calm and distract patients before complex and painful procedures; they use special toys to explain procedures to young children; and they offer opportunities for patients to just be kids and to have child-like, regular playtime, even while in the hospital.) 

My handler for the day was another good friend, Lesley.  While she normally serves in Development for the hospital Foundation, today she was the key person who would get me to each of my rotations, keep me fed so that I wouldn’t pass out, let me cry on her shoulder (which I did a lot) and, little did I know at the time, but who would also be capturing many of my experiences with words and pictures to be given back to me later. 

Lesley dropped me off in surgery with my guide for several hours, Chelsea.  Chelsea is a very-experienced Registered Nurse who educated me all about the ins-and-outs of the surgical area.   She had me popping between operating rooms so that I could see as many different surgeries as possible.  I saw a cleft pallette being repaired in a 6 year old boy, an orthopedic foot surgery (which was by-far the most gross surgery I saw all day…ugh….), an epilepsy surgery that didn’t go exactly as planned, an iliostomy on a two-month old baby, ear tube surgeries, and the very beginnings of a brain surgery, heart surgery, and eye surgery.  I was completely in awe of the amazing IMRI suite that has been built at Cook…one of only 2 in Texas.  This suite makes it possible for an MRI to be taken of a brain surgery patient DURING the surgery so that the neurosurgeon is able to detect if all of a tumor has been removed prior to finishing.  Truly amazing!   My friend, Lee, was able to see a complex brain surgery take place later in the day in the IMRI suite and has the pictures to prove it!  (yuck!)

I left my surgery rotation surprised at how very little blood there actually is; how quiet and calm the surgical areas are (so unlike television); how beautiful some of the operating rooms were – big windows and natural light – not that the patient cares probably, but its nice for the hardworking staff to see the sun; and in awe of the complex “dance” that the surgical teams do all day long: the big board where they track everything happening; the teams of people who move back and forth between patients all day long; the staff members who keep everything so clean, so well-organized.  The doctors were all so kind to welcome us into their surgeries and to take the time to explain procedures and allow us to get up-close, look through their microscopes and really see inside the bodies they were working on. 

But, most of the time while I was watching, I was thinking about those patient’s families, sitting out in the waiting room, wondering what was happening with their child and I was feeling guilty for being in there when that is the place they would most want to be.

I’ve been that THAT mom.  My son had surgery when he was six-months-old.  They carried him away from me to take him, give him anesthesia, and operate on him, while I had to sit in a waiting room and wonder what was happening.   It’s a horrible, horrible feeling.   So, while I was honored and in awe of all the complexities that I was allowed to be part of in the surgical areas, my heart was with those families and wanting to run out of the room and tell them that you have no idea of what amazing people are in there with your child right now.    They are holding her hand, and saying only good things above her, and working so hard to make sure she’ll come right back to you. 

When my friend Lesley came to pick me up from surgery and take me to my next rotation, she was wise to sit me down for a few minutes of “down time” before we moved on.   I needed to catch my breath and take it all in.  I had started the day just hoping that I wouldn’t pass out if I saw a lot of blood, but never imagined the complex emotions that would start seeping in so quickly.   Thankfully, Lesley had tissues, and I would need a lot of them, as my day was just getting started.  

More tomorrow...

Happy New Year!

A few of the thoughts I'll be carrying into 2012 with me.........When in doubt, just take the next small step. It's OK to get angry with God - he can take it. When it comes to chocolate, resistance is futile. Don't compare your life to others - you have no idea what their journey is all about. Take a deep breath- it calms the mind. Go after what you love in life and don't take no for an answer. Take time to play. Laugh and live loudly. Believe in miracles. Learn something new. You are never fully dressed without a smile.  The best is yet to come...

And a few more thoughts (that didn’t fit into my Facebook status…ha!)

I will stop collecting water bottles on my bedside table.  I will sit and be still and listen intently with my Son for at least 30 minutes after his school day.  I will try and learn the “joy of quiet” by turning off all the screens in my life every Sunday afternoon (for at least the month of January!)    I will remember the expression “worry is worship to the wrong God.”   I will spend time with people who accept me unconditionally.  I will take baby steps in the right direction.  I will give myself a break. I will take risks and get back up if I fall.  I will practice more yoga.  I will use my Bluetooth in the car instead of holding my cell phone while driving.   I will break a few rules.   I will remember that one person can make a difference.

Some things I’m looking forward to in 2012…

Dress 4 Yellow.  The Lorax.  A good, surprise phone call.  That moment when I realize spring has arrived.  New York.  The last day of school.  My mom’s 65^th birthday.  An evening with good friends.  The excitement of the tooth fairy’s first visit.  The kiss that takes my breath away.  Wearing my new dress.  A moment of pure inspiration.   The beach.   Paris.   Switching to my summer shoes.  Any sale at Neiman Marcus.  Making a new friend.  

Wishing each of you a 2012 when you will use your 17 smiling muscles a lot more than your 47 frowning muscles!