Latest Update!

Yesterday was Olivia's 3 month post op with Dr. Rahbar.    You can tell she is tired of the doctors office.  She was screaming the whole way into the exam room.  Then she needs to be seen by the physician's assistant, before being seen by the doctor.  (he's kind of a big deal!).  So that's two ear checks, two nose checks, two lung checks.  The poor kid.  Not only that but she has a cold, so she was already not comfortable.    In even more insult to injury, Dr. Rahbar has to put a scope in her nose every time we see him so he can check her airway and larynx.   Unfortunately yesterday he said the cold was so bad he couldn't even see her larynx.  Sigh.    Dr. Rahbar always walks into the room with a trail of people following him.  Hanging on his every word, jotting notes.  Its like he's a celebrity.  Yet, he ALWAYS shakes my hand, tell me how nice it is to see me  again, and talks to Olivia.    Olivia actually threw up on him yesterday, and he cleaned her up himself.  I was impressed!

At any rate, Olivia still needs her liquids thickened.  We are at a 50% reduction of thickener and that's where we will remain for the time being. Dropping to 40% caused Olivia to aspirate again.   Olivia now needs to be evaluated by the feeding team at Children's.  They essentially watch how Olivia eats and drinks and figure out what causes her to cough, choke and aspirate.   Once this is discovered, they can figure out how to strengthen her muscles to allow her more coordinated swallowing.   I guess it all makes sense.  She has never been able to swallow normally, so of course it will take some practice.    In January Olivia will have her fourth and hopefully last swallow study and if she passes, we are past this!   If she fails, well, we will figure it out then.    Dr. Rahbar said "I have no doubt she will eventually be fine".  And, I have no doubt he knows what he is talking about. 

So, why am I taking this so hard?  Well, I guess I just wanted it to be over.  For the cleft repair to have just fixed her.  I remember the first pulmonologist we saw, before I fired her, saying "Oh, if she is aspirating we can just fix it with thickened formula, or maybe just a couple stitches in her throat."  Well, Dr. she was aspirating, despite your thought that she wasn't, she couldn't just use thickened formula because she initially failed both thick and thin liquids.  And no, her surgery was far more than just a couple of stitches.  Talk about false hope!

One year ago yesterday, Olivia's cleft was discovered.   Her first of four different trips to the operating room in 17 months.  Not once did it ever get easier.  I never had any idea that this would take so long to correct.  It breaks my heart every time Olivia wants to drink a juice box, or eat an apple.  Such a simple task for most, but her little throat just can't do it yet. 

On my drive home, two of my closest friends were texting me "how did it "go?".  Anxious to hear about Olivia's progress.   Funny who truly cares.  I've explained to family members a million times what is wrong with Olivia.  Either they aren't listening or just don't comprehend.  Olivia does not have a "normal" condition.  She has a RARE congenital condition.    I was asked "Why does she have to keep going to Children's?"  Well, first of all, because she had MAJOR surgery on her AIRWAY and needs to be followed by the surgeon until she is 100%.  The lack of compassion I receive from those who are supposed to give it the most astounds me.  I've said it before, and I will say it again, I have the most amazing people in my life, that I just can't thank enough for being there for me the past 18 months.  There have been many days of sadness and tears and I always knew I had people to talk to, vent to, cry to, or even bring me Chinese food in the hospital and say they were Olivia's aunt because visiting hours were over (Lauren!).

Having Olivia as my daughter is a gift. There is a special sparkle in her eyes.  It is also emotionally exhausting.  I just want this chapter of our lives over.    Eventually it will be, I know, and I 'm so grateful.  I just hope it hurries up a little.

Gratitude

It's been over two months since Olivia had her laryngeal cleft repair.  Each day she seems to learn something new!  She is currently able to drink liquids that are 40% thinner than before, and we often catch her "stealing" drinks from Christian and Julia....which she no longer coughs and chokes while drinking!  It's amazing!  Although it has not yet been confirmed, I am very confident that this surgery "fixed" Olivia!

2/24/10...BABY DAY!

Its ironic, you get pregnant, feel the joy of adding another baby to your family, and usually the thought never crosses your mind as to what actually may be in store for you.  Having two easy, completely normal pregnancies made me take healthy children for granted.  I remember leaving my ultrasound with Olivia so upset that they could not determine her gender...literally almost crying.  OVER HER GENDER?  Later I felt awful when the doctor told me there may actually be something wrong with her heart, AND that she had the two markers for Down's Syndrome.   And I was worried about gender.  Shallow at best!

Another safe delivery!  Thanks Dr. M!

I remember thinking, another baby, really not a huge expense, I'll nurse, so no formula, and she has plenty of clothes etc from the older kids.    What I didn't think was that Olivia may not be able to nurse because she wouldn't be able to swallow normally, or that she would incur about $6000 out of pocket in medical expenses. (well over $100k was covered by insurance in her first 12 months alone).    Never in my life had I heard of dysphagia, dysphagia induced aspiration, or a laryngeal cleft.  Never had I been inside Children's Hospital as a parent.  Never did I count the number of breaths per minute my baby was taking, debating a trip to an Emergency Room.   If I could have taken all that Olivia has been through, and done it for her, I would have.  No child should ever have to endure countless medical testing, surgeries, etc.

A year ago on August 23rd, 2010 we finally got her official diagnosis.  No it was not Cystic Fibrosis, no, it was not a neurological disorder, no, we did not need genetic testing....as all of these options were once discussed.   Yet, as of this date we did not know the exact cause of her aspiration. I remember Children's sent in a social worker to talk with me because of this sudden admission into the hospital and to help me deal with the stress.  I remember saying to her "This could be worse, she could have something incurable"   Sure, I could have crumbled.  God knows I wanted to.  Yet, Olivia needed me.  My other kids needed me.  I have always been strong.  Having Olivia just made me unbreakable.


Olivia was meant to be my baby.  God's way of teaching me to be less critical, less materialistic, pretty much less of a bitch.  It can't be a coincidence that I was pregnant with my third child who did not survive.  I had said that baby would be named Adriana if  it was a girl.  Instead I got Olivia...or "Liv"  (thanks for pointing this out Julie!)  Liv, very fitting for such a strong little fighter!   Not only that, her middle name, Dianne, is after one of the strongest women I've ever known, my aunt who lost her battle to cancer December 29, 2009.  I know some people will think I'm crazy, but I really feel Dianne has been with Olivia every step of the way, protecting her.   Before I lost a baby, I thought a miscarriage was "not a big deal". I was obnoxiously pro-choice, maybe even pro-abortion.   I think back and cringe at some of the statements I have made.    Now, I realize that miscarriage is a HUGE deal.  Its a devastating, painful occurrence that you never quite get over.  For those who don't know, the necklace I always wear is a forget-me-not flower with the birthstones of my baby's month of conception, month of loss and month he/she would have been born.   I still think women have a right to do as they please with their bodies, but after fighting for a year just to keep my daughter alive, and seeing kids far sicker than Olivia and parents continuing the struggle, I take a whole new appreciation of 'life' even inside the womb.


The whole point of this blog?  A huge thank you, to Olivia.  Thank you for fighting and winning, thank you for making me appreciate Christian and Julia's good health, thank you for making me stronger than I ever thought possible, and thank you for the honor of being your mother. 

Sept 2010

July 2011

Post Operative Visit and a BIG THANK YOU!

Today we had our follow up visit with Dr. Rahbar (have I mentioned I love him?).  Seeing there was an emergency at the hospital his appointments were pushed back over an hour.  In the meantime, in the waiting room I met another mother whose son had the same condition as Olivia.  We chatted for about 30 minutes and our stories were almost absolutely identical.  Except, her son wasn't diagnosed til close to 18 months of age, AND he flat lined on the operating table....again, I'm truly lucky I have Olivia.  As scary as that story was, her son now 7 months post op from the same procedure as Olivia finally passed his swallow study!  Such a great ending!  I really just wanted to give this woman a big hug and become best friends, because I know exactly what she has been through.  It was so comforting to finally meet someone who knew what I was talking about, and who understood what it was like to be told countless times that there is nothing wrong with your child. Yet, I'm a firm believer, mothers intuition is ALWAYS right.   We both agree that Dr. Rahbar has truly changed our children's lives. 

So enough about me, Olivia is doing fantastic!  She had to have a scope put in her nose to check the stitches in her throat. She didn't make a sound. Not a cry, not a grimace, NOTHING.  Olivia's motto is pretty much "no big deal".  I might be strong, but I really think Olivia has me beat.  The stitches look great, and the doctor said that everything looks PERFECT.  Yup, he said PERFECT.    I asked the doctor for a quick picture, because he changed my daughters life and he was so kind to oblige....I mean really, I'm sure he has TONS of other patients waiting, but he didn't seem to mind one bit! 

Now, we have a new plan.  Starting in July we will start thinning out her drinks.  He said to reduce the thickness by 10% for 10 day intervals and see how she does.  If she doesn't do well, stop and wait longer.  We don't have to go back until late September!  He also said we don't have to see her Pulmonologist anymore at this point, and that he can take care of her ear tubes as well. YAY!   3 doctors appointments knocked right off my summer schedule!   My new goal is to convince her GI doctor that the feeding tube really is unnecessary at this point.  Their concern was she would not be able to eat once the surgery was done.  However, she had no problems tolerating food as soon as she woke up, so there is really no reason for the tube.  Worst case scenario, she just has to keep drinking thick liquids.

It seems this will be a lengthy process, about 12-16 weeks before he will even do a repeat swallow study to confirm she no longer aspirates, but I'm still elated.   The alternative would have been waiting and waiting to see if the issue "corrected itself" (which I knew in my heart was never going to happen) and have her even older and able to remember going through all of this.  

For the first time in 15 months, I finally feel relieved. The last fifteen months consisted of meeting at least 10 different doctors, seeing my pediatrician at least once a week, nebulizer treatments, steroids, chest x-rays, reflux medications, endoscopies, broncoscopies, barium swallows, modified barium swallows, ear tubes, hearing tests (failed!) naso-gastric tubes, gastronomy tubes, thickened formulas, dairy free diets, visiting nurses, over $150,000 in medical bills (THANK GOD FOR INSURANCE!)  and a whole lot of desperation!   My months of research,  and tears have paid off.  We MADE IT!  I truly feel like this is the beginning of the end of this horrible memory, hopefully I'm not wrong.  

I could not have gotten through any of this without my mother in law, father in law, sister in law and friends.  Helping out with the older kids, trying to keep their lives as normal as possible so that they don't resent Olivia for all the attention she needs. My mother in law came to surgeries, and tests with me, listened to me cry, sat by while I had a breakdown over the Cystic Fibrosis test and took it out on a random stranger on an elevator and even asked a Priest in the hallway to bless Olivia. (Yup, that's her style!)  And my friends who have listened to more than their fair share of my medical gibberish and never, ever acted annoyed by all of it. I have received countless texts from them asking for Olivia updates. And yes, I realize I say this in just about every blog, but it AMAZES me how much people truly care.  Olivia was a gift.  She has taught me so much, and made me so grateful for what I do have in my life. She has taught me who the people who really matter are.  She has made me a better person.  Cliche, yes, but so true.

There are those who have been supportive every step of the way.   There are those who should  have been and weren't, to the ones that were, Olivia and I are both eternally grateful.  

My daughter is a ROCK STAR!! (REALLY!)

Monday, June 6th, Olivia had her laryngeal cleft repair surgery.  As I have said, this is major surgery.  I was a nervous wreck for months about it, literally.  I found the BEST doctor in the entire WORLD for her.  Really. I'm not exaggerating.  Dr. Rahbar was the first in the entire world to figure out how to repair laryngeal clefts robotically as opposed to an incision right in her throat that would be a scar for life.  Very few doctors perform this procedure, and those that do, learned from Dr. Rahbar.  He is absolutely AMAZING and I cannot say enough how thankful I am for him.  I spent HOURS researching him and his work.  It was astounding what this man has done.  How lucky am I that the best doctor in the world for my daughters rare condition is 30 miles away?

So off we went to Children's Hospital Boston, which truly is the GREATEST hospital ON EARTH.   Everyone there treats you like you are the only patient/parent there.  There are hundreds of sick children around and they cater to you like you are the only one.  It is truly heartwarming.    We waited for what seemed like an eternity, and finally it was time for Olivia to go up to the OR.  Now of course, Olivia did not want to go alone with the anesthesiologist as she had in prior surgeries.  My husband offered to go with her, but I have gone this far, I wasn't going to be weak now.  So, I had to get into scrubs and go with her.  And let me tell you, helping anesthetize your own child is torture.  They said "you are going to hear her breathe funny and her eyes are going to roll back in her head".  But her eyes were WIDE open and they said "She's out".  Equally creepy.  So I gave my precious baby girl a kiss and left the cleanest, brightest, most high tech operating room I've ever seen in my life. When I came out, my husband said he was surprised how well I "held it together".  What he doesn't realize is that I've already lost it before.  I've spent days crying in the hospital. I've wondered why my daughter. I've cried while I had to hold my baby down and insert and NG tube.  This wasn't easy, but I've come a long way since last year.  

About 2 hours Post Op

Now, the waiting.  Never easy, but this time was especially hard because the doctor said the procedure would last  anywhere from 1.5 hours to 3 hours.  He came out in about 2 hours and said the procedure not only went as planned, but the broncoscopy they also performed showed a normal airway.  (Previously her airway had been abnormal, with what her pulmonologist dubbed as the "worst case of aspiration he had ever seen in his career"). She also had new ear tubes placed, as the ones she got in September were now non-functioning.  (yet this was VERY minor compared to what her primary surgery was(.  Olivia was transferred to the Intensive Care Unit as a standard precaution because she had major surgery on her airway.  When we initially saw her she was very cranky and upset.  Yet after a short nap, she was already all smiles again!!    By 6 hours post op, she was  just about back to her normal self!  

ICU was undoubtedly the scariest place I've been inside at Children's.  This is where they put the really, really, sick kids. The doors are all locked, you can't get in without a nurse.  There is no bathrooms in the room or even on the unlocked side of the doors to the unit.  No cell phones are allowed.  The rooms all have windows into the next room so that the nurses can watch both of their patients at the same time.  There is so much equipment in the room  that from one angle you can't even see where your child is.  Scary.  And there is my precious daughter, in one of these beds, with wires all over her body monitoring her heart, breathing and blood pressure.  

Olivia had me  up most of the night, but by morning she was back to her normal self completely.  The nurse had to ask a doctor for special permission to just let her walk around the room because I couldn't keep her still.  And then, Olivia was OFF.  There was a emergency in a room a few doors down and all available nurses and doctors were paged.  People started running past our room to get to the emergency.  Well, wouldn't you know, Olivia decided she would have to join in, and started bolting down the hall behind them.  Thankfully I grabbed her in time, but one doctor later said "I'd like to thank your daughter for trying to help out with that situation".  What kind of kid in ICU is running around?  What kind of kid is eating Goldfish crackers for breakfast after having surgery on their airway?  Waving bye bye to all the nurses as she gets transported to her new room?  The kind of kid who is unphased by any "bump in the road".  The kind of kid who grows up to be a STRONG woman.  Hmmm.  I wonder where she gets it?

Running the halls

So here we are back home. Olivia is acting as if nothing ever happened.  We won't know if the surgery was as success for about 4 to 6 weeks, but the doctor is optimistic.   Do I wish Olivia was never born with this condition? Absolutely.  Am I thankful for everything we have on our side?  More than words could ever describe.  If Olivia is anything like me, and I know she is, she will fight until she wins.  I already see it in her.   

Countdown Begins

Three weeks from today, all will be said and done as far as Olivia's laryngeal cleft repair.  We have had this surgery date since February, but now, as it approaches, and becomes more real, I'm starting to get nervous.  Yes, I know she is in the best hands, yes, I know she has overcome so much in the past year of her life, and yes I know this is going to hopefully fix her for good, but quite honestly, I'm terrified.   People continuously say she will be "fine". As I have said before, no one really can say with certainty she will be fine.  She is having surgery on her windpipe,which is most obviously vital to LIVE.  She will be under anesthesia for the THIRD time in her life. She will be under for THREE hours.   She will be admitted to intensive care following the surgery to monitor her breathing. Her doctors initially did not recommend this procedure because its is SUCH a big deal they wanted to be 100% sure it was worth the risk.  Tell me any of that isn't terrifying?  I am literally sick to my stomach thinking about it. 



However, if there was ever a go-to guy for this surgery it's her surgeon. When you google his name all you find is AMAZING stories on him.  The man is a genius.  http://specialists.childrenshospital.org/directory/profile.asp?dbase=main&setsize=5&last=rahbar&pict_id=9904160.  And while yes, I truly believe I have the very best surgeon in the world working on my sweet baby girl, I know things can go wrong, not often, but they can.  My daughters life will be in this man's hands while I sit in a room waiting, helpless.  As most people know, I'm the tiger mom, protecting my kids regardless of the consequences and being fierce while I'm at it.  What happens to the tiger mom who can't do a single thing  but wait, and hope and pray?  Well, she goes a little crazy.

I've come to the realization Olivia was given to ME because I was meant to care for her.  Only a strong person could do this. Being Olivia's mother has made me a better person.  I know, cliche at best, but it's true.  I have come to be far less judgemental of others, for you never know what type of battle they may be facing inside. I have learned the people who care about you will always be there no matter what. My friends and husbands family have been by my side every step of the way.  I receive emails from people I have not seen since high school asking how Olivia is. More than I can say about my own family.  I can't even say how much each email, text, phone call, facebook message or comment means to me.   It truly amazes me and honestly helps me get through this.  You do not know the pain a sick child brings until you actually live it yourself.  I was truly lucky that Christian and Julia had absolutely NO health issues.  I just never realized how lucky until Olivia was born.  I cannot even explain the heartbreak I feel when she wants to drink a juice box, or anything else her brother and sister have.  Such a basic thing, drinking liquids, and she can't do it.  Only one in 20,000 babies has this condition.   I don't know why she was chosen for this, but I do know she is just like her mama, and she will get through this, just like everything else. 

Memories

Over the past week Olivia's G-tube site has been red and swollen.  Since yesterday it became considerably worse, draining, swollen, red, and she would SCREAM when I tried to clean it.  Soooo off we went to Boston for a 1 PM appointment with the GI clinic.  Turns out Olivia has a little bit of an infection, which is what I suspected, but of course, my thoughts on the drive in were of all sorts of things that could possibly go wrong.    One bad experience and you are scarred for life, and that brings me to blog about memories.  Its amazing what can trigger memories.    For example, there is a huge sculpture type toy that makes a clicking noise as a ball drops through it in the main lobby of Children's Hospital.  The sound of that clicking noise makes me feel nauseous.  Now, why on Earth would a toy make me nauseous?  Because I will never forget, August 23rd 2010, when I walked back into the hospital with 3 bags, and my diaper bag and purse and not being able to get through security because I wasn't issued a badge yet.  I could hear the "click, click, click"  as I struggled to find my license to prove that yes, my daughter was just admitted and was probably hysterical that I wasn't with her yet.   And when I finally did get up to her room, she had her head on my mother in law's shoulder and a newly placed NG tube in her nose and I just held her and cried saying "I'm so sorry" as if it was my fault.  The poor girl was starving.  They started the tube at 1 oz every HOUR for 24 hours. In the meantime she had been shut off from any other feeding besides pureed foods.  I just cried and cried telling her I was so sorry.  Thank God she will never have memory of such heartache.    So, each and every time I go into Children's Hospital, the sound of the click, click, click, mixed with the smell of the baked goods from Au Bon Pain, and I just want to throw up.

And on the topic of smells....Children's Hospital uses Pampers diapers.  I usually buy Luvs or even Target brand.   For Olivia's birthday, my mother in law bought Olivia a big box of Pampers (among other things)  as soon as I put the first one on her, the whole experience came back to me yet AGAIN!  Just the smell of the diaper. And I could smell it all day, with each diaper change.  A very
 light scent that no one else could probably notice, but to me, it was making me crazy.  Thankfully, Ive adjusted to it, and I'm fine now. Unlike the sounds.

August 23rd, 2010.  Quite possibly the scariest day of my life.  Twenty-eight years and there had never been a time I had ever felt so helpless and scared.   I'm a strong person, I can get through things, and point proven, I did.  But I'll admit it, I have never been more scared in my life.    I can't even imagine what it would have been like if I wasn't strong!  I guess the saying is true, God never gives you more than you can handle. 

Update and a Vent!

Tuesday we met with Dr. Rehbar, the very well known otolaryngologist who will be permorming Olivia's laryngeal cleft repair in June. It has been decided that it is best to fix the cleft sooner than later. Especially seeing she seems thirsty all the time.  The doctor had previously said that he felt repairing the cleft would not help Olivia's condition when he saw it in the operating room in September.  Dr Rehbar said that the only other reason for Olivia's aspiration would be a neurological disorder and where she is totally developmentally normal, he feels the cleft has to be the reason she aspirates.

All I want is for my daughter to be OK. To be able to drink a cup of water or juice. To be able to eat a popsicle or a slice of watermelon or a bowl of soup when she has a cold.  Whatever it takes to do it, I'm on board.

Now here is my pet peeve.  Olivia has a RARE congenital disease. So no, you don't know "someone" who had that.  you don't know what the surgery is like.  By the way, its 3 hours in the OR under anesthesia, while the doctor performs the whole thing robotically and then a night in Intensive Care.  Anyone with kids can relate to the scariness of the words anesthesia and intensive care.    I appreciate so much everyone who has been there for me every step of the way, even if only through a simple facebook comment or message...it truly means the world to me.  And then there is the "she will be fine".  Can you say with certainty that my daughter will be fine? And the people who are saying it, most of them haven't even met her.  Now, if you know Olivia and you know the whole story a "she will be fine" is OK.  But if you have never met her, have NO IDEA what a laryngeal cleft or it's repair is, do not say that she will "be fine". Its condescending at best. 

My heart goes out to every parent who has ever had the displeasure of sitting in the operating room waitng area while their child is in surgery.  It is a truly heart wrenching experience that cannot be described or understood until you have felt it.   What is even worse is trip after trip after trip to doctor upon doctor, procedure upon procedure just praying at each visit this will finally be the one that they figure her out and FIX HER.  I know that I am actually one of the lucky ones. I walk into Children's Hospital and I thank GOD I have Olivia.  Some are not so lucky. 

I know that Olivia is in the best hospital in the country.  They will fix her eventually.  Its just been a very long road, but we are up for the challenge.