Research before you judge

For months I've ignored the hateful statements made by those who feel Justina Pelletier was unjustly taken from her parents care by Boston Children's Hospital.     Of course with the media paints a scary picture of a seemingly normal girl being ripped from her parents arms and forced into the "system".  There is propaganda surrounding this case everywhere.  People who have no connection to Boston Children's bashing them, talking about how awful they are.  On the surface, yes it looks like a horrible story of parents losing their child after looking for a second opinion.   However, any educated person should know that you cannot take a story from a newspaper for 100% fact, nor to believe that pertinent information may have been excluded.

So the question remains: Does Pelletier suffer from mitochondrial disease as her parents state, or is Justina a victim of medical abuse?  How do we make that decision based solely on sensationalized news stories?    Of course it's always heart breaking to see a family torn apart, but in reality,  this has the potential to be child abuse.    As stated in an article written by the Slate Group:

 A 2011 study of medical child abuse cases published in the journal Pediatrics suggested that many medical child abusers seek out a diagnosis of mitochondrial disease, in part because it guarantees a long period of heavy involvement with the medical system. Although the study’s sample size was small, the numbers are still deeply troubling: More than half of children subjected to medical child abuse had been tested for mitochondrial disease.

Unfortunately, the symptoms between medical abuse and mitochondrial disease are very similar, both of which can be life threatening.  So which is the correct way to handle it?   Contrary to popular belief, DCF does not make the decision on where the child gets placed.  That decision is made by the judicial system.  In this case the evidence was substantial enough for a judge to place Justina is alternate care away from her parents.     So, you have a doctor who does not believe Justina has mito, a DCF worker who feels there is abuse/neglect involved, and a judge who takes all of this evidence and finds it pertinent to his decision.     This is the legal system of the United States.  This is the very system that keeps crack babies out of the arms of their crack addicted mothers.  Just because a family looks good on the exterior doesn't mean they are any better than the crack moms.     Removal of a child from their family requires a OVERWHELMING burden of proof.  

Of course I feel for this family, if they are in fact innocent in all of this.  However,  what if BCH is actually right?  Then they may have saved this child.   If the tables were turned and BCH released Justina to her parents and it was later discovered that the parents were abusive, the outrage would be unimaginable.    There is no winning with the public.  

As for my family,  my entire blog is dedicated to the passion I have for Children's Hospital Boston.   I never, ever once was threatened in any way, shape or form.  My daughter was labeled as "failure to thrive"  that could easily be misconstrued as I wasn't feeding or caring for her properly.    There was never even an insinuation that I could be to blame for any of her illness.   (And yes, she had a rare diagnosis)   The doctors at Children's Hospital Boston are the most amazing team of doctors I have ever met in my life.   My daughter had a team of 5.  We met many more along the way, from surgeons to anesthesiologists and every one of them were respectful, knowledgeable and truly caring.   One anesthesiologist was literally rocking my daughter to comfort her when I was allowed back into recovery.   You do not receive that type of personalized, heart warming care anywhere else.   

The point of this blog is to pretty much say, THERE ARE TWO SIDES TO EVERY STORY.   HIPPA is hindering CHB's side.  Before bashing an institution comprised of  first-class doctors with knowledge that saves the lives of THOUSANDS of children every year   take a unbiased approach and research the topic at hand.   

My daughter with her surgeon at Boston Children's

Maybe Children's is wrong, but in my heart I don't think they are.   Tarnishing a hospital that has made so many families lives complete (my own included) truly isn't fair.   Don't believe everything you read, and take every news story with a grain of salt.  

I wish the best to the Pelletier family, but truly, in my eyes the hospital did what they felt was best. 

Soliciting...

Today after a slight "family disagreement"  someone told me I was "soliciting" for donations to Children's.    Soliciting seems like such a sterile word.   Such a harsh word. So business- like.  Not the warm and fuzzy I was going for with FUNDRAISING.   So here it is.   My children are the very reason I breathe.  There is not a single thing more important to me on this Earth than Christian, Julia and Olivia Kelly.  I would die for them.  I live my life FOR them.   In 2010 when Olivia completed our family and was so very sick, I literally thought I was going to die from the stress of her illness.   I knew I had two other children to take care of, and that kept me going, but the waiting, the testing, the unanswered questions, sucked the life out of me.   It was a long, long road.  It was covered in bumps along the way.    Since those days are a thing of the past and my daughter is the most delightful, fearless, beautiful four year old I know, I have been humbled.    Would I  have ever walked 2 miles for anything 4 years ago? Probably not.   Today,  I jump at the opportunity to help the hospital that saved my daughter.      I am not "soliciting" I am simply trying to give back.  Paying it forward.  My daughter was lucky.  Some parents are not so lucky.  Some have children with terminal illness.  Some kids never walk or talk or do anything with normalcy.  Olivia does, and it's not because of luck its because of the dedicated men and women at Children's Hospital Boston who meticulously FIXED her problem. 

Olivia had a 1 in 20,000 congenital defect.  There are kids in Children's Hospital with diseases even more rare, that need research.  Olivia's surgeon is the man who developed the robotic laryngeal cleft repair.   That research takes money, and we all know that money doesn't grow on trees.  So that  family who may not have the best health insurance, or the ability to pay for uncovered expenses  should just be left to suffer?  Without fundraising this hospital couldn't do what it does! 

So, maybe I am soliciting.  I'm asking people who are close to me or even not so close (Ive had complete strangers donate to my page, and it truly warms my heart) to help the cause in the name of my daughter who fought until she won.    My baby won her battle...and those who have not reached victory yet deserve the chance.  Their parents deserve to know every possible treatment will be available to them regardless of their socioeconomic status.   If  that's soliciting, well then, call me a solicitor. 

My daughter is alive and well today because of a building with a team of amazing people.   I'm not trying to raise money for the benefit of me, or my family. I am doing it for the thousands of children who aren't quite there yet.

It's a personal choice, support our mission or don't.  If you don't, I understand.  But please do not look down upon me as a "beggar" for trying to raise money for those less fortunate than myself.  No, I don't know these kids, or their parents, and I don't know their stories, but what I do know is that no child should suffer and they all should be afforded the best possible care.  

And that is why we,  The Kelly Family and The Foley Family are TEAM OLIVIA STRONG. 

Much overdue update...never forget where you came from...

In the excitement of it all, I realized this blog didn't get the attention it so desperately needed.  You see, when my whole world was falling apart blogging about it was therapeutic, helpful, healing.   Now that my once sick, failure to thrive daughter is a fully thriving, stubborn, energetic three year old, some things just get pushed to the wayside.  :)

On October 23, 2013 OLIVIA DIANNE KELLY PASSED HER THIN LIQUIDS SWALLOW STUDY!     It is a day that will forever be in my top 10 best days EVER.    It was her 6th swallow study.  The initial first one, a complete and utter shock back in August 2010 resulted in Olivia being admitted IMMEDIATELY for observations that lasted 4 days and got her a feeding tube in place.  

Olivia sat through the test like a champion, like the true fighter she is and when they told me she passed I literally cried tears of joy.  I was SHOCKED.  After hearing so many times before " she didn't pass, she is still aspirating" and then trying to figure out the "next course of treatment"  I thought my chance of getting a positive result were slim.   The entire staff was thrilled, as they all became familiar with Olivia.  They all cheered for her! It was a life changing day!  A day we will never, ever forget.  

Although the phrase "Don't ever forget where you came from" is so cliche, in this situation it's really all I can think to sum it up.   I had my first baby at age 23, a completely healthy, uncomplicated pregnancy, a difficult labor which ended in a c-section, but at the end an extremely healthy baby boy who consumed every ounce of love I had within my being.  Two years later,  at age 25, I had another seamless pregnancy, not a touch of morning sickness, a scheduled c-section that went perfect and another beautiful, healthy baby.   And then, just when I thought I had this whole baby making thing mastered, I got pregnant on the very first try for baby number three.  Like clockwork.   I later miscarried that child and was devastated by the loss.   As soon as I got the OK to try again I did, and again, it happened very quickly.   I was nervous but ecstatic at the same time.   And then the morning sickness began.  EVERY. SINGLE. DAY for the ENTIRE pregnancy. And then the soft markers for Down's Syndrome came. A specialist in Boston assured me my chances of a baby with Downs was 1 in 375 but I still had a nagging feeling something was wrong.   And then the pre pre-eclampsia came and got me tossed on bed rest for 4 weeks.  Finally, the day she was born I held her and cried that she was finally here, that she was perfect.   For hours that night I looked her over to see if there were any signs of Down's Syndrome.   I remember her breathing seemed off to me, but thought I was once again overreacting.       It took over 5 months to get a definitive diagnosis and 27 months, countless tests, 10 anesthesia procedures and a lot of anxiety to get a treatment, but the moral of the story is, MOTHERS INTUITION prevails over all.    So, back to don't forget where you come from.  I was the mother who had everything perfect.  The perfect clothes for my kids, the perfect shoes, the perfect play dates.  Yet when you have something challenged as monumental as your child's LIFE that new pair of Nikes really doesn't mean a thing.  I have been humbled.  I have learned what is important in my children's lives and its not having the best material things.   

Olivia's team of doctors at Children's Hospital Boston are truly heroes in my book.   Dr. Reza Rahbar is the most gifted surgeon I've ever had the pleasure of knowing.  He mastered the technique to fix the laryngeal cleft without a scar through the throat.  Only a few doctors in the world know how to do this. And guess who they learned it from?     I cannot ever express my gratitude and love for this man for saving my baby.

They say everything happens for a reason.   Olivia happened to ME for a reason.  Yes, it was stressful, and there was pain and heartache and confusion but at the end of it all, I have this beautiful, caring, STRONG daughter that I know will reach any goal she puts in front of her.   

You did Olivia, YOU WON!!!!

And now we wait....

Last Tuesday Olivia had her second meeting with the feeding team at Children's.    I told Dr. Rahbar that the first meeting was useless so he suggested I take her to the Boston location because they may be more effective.  So even though in the back of my mind I disagreed, I went.   

After waiting for a speech pathologist (feeding team member) longer than I've ever waited for a well known surgeon, in walks a woman and her student.  Both are all smiles as if this is some sort of fun.  Gwen I think was her name.  So she has a stupid name and a stupid smile and now she wants to ask me a million questions that I've not  only answered 700 times before but are clearly in HER CHART if Gwen just thought to read it.    

Gwen wanted to know why I didn't think it was a good idea to continue to try to thin out Olivia's liquids even though she FAILED her swallow study.  Well, Gwen, I may have went to school for Criminal Justice, but I do think that aspiration of liquids into the lungs may be a serious concern.  

 

So Gwen (the genius) asked Olivia to sing her a song.  Olivia (the mini-Alexis) must have sensed Gwen's stupidity and refused.  On the inside I was laughing.   So for about 25 minutes all we did was watch Olivia tear through an exam room, and take a few random sips of her milk.   Gwen seemed to think that she did well with her swallowing.  Yes, she did, perhaps because it was THICKENED???   

I had thinned out liquids for several weeks prior to this appointment and noticed that Olivia was VERY congested and her lungs sounded raspy to me.  Seeing Gwen wanted me to thin them even further I asked that a doctor please listen to her lungs just to make sure they were clear.   After initially telling me yes

the genius then told me that because Olivia was not there for a "medical" appointment, no doctor NOR nurse could listen to her.    Long story short, everyone knows I don't take NO for an answer.  And Dr. Rahbar DID listen to her lungs, and they were clear.     I was pretty shocked with the lack of help this "feeding team" was.    A trip to Boston really is no big deal these days for me, but Olivia hates going.  Do I blame her?  Not at all.  I try to limit her appointments to cut back on upsetting her.  This appointment not only wasted my time, it stressed out Olivia and I, and will be billing my insurance $596 for Gwen to sit and smile at me.  Maybe I should have been a speech pathologist.

So after all of this...what was the outcome?  The doctor feels that I am intelligent enough (YAY!) to make my own decision regarding Olivia. I can wait it out, or I can try to "force" her into swallowing thin liquids.  He seems to think practice will make perfect.  Although he did warn, "although it could lead to pneumonia".  So, I'm faced with a dilemma.  For the mean time, I honestly rather thicken Olivia's drinks than have her aspirate them.  Maybe I'm being conservative, but at the end of the day, Olivia is MY baby, not just another case file.      So for the next six months it's up to me what I want to do as far as Olivia's progress.  I'm just going to take each day at a time, but I'm not going to force her to do anything.    In six months we will revise the plan.  Frustrating, stressful and it makes me sad all at once.  Life sure is a challenge for some. No one said it would be easy, just that it would be worth the ride. 

Heartbroken

On Tuesday, Olivia had her 4th swallow study. A lot of people ask what exactly that is.  The short version is, a test that involves Olivia drinking liquids with barium and being xrayed while doing so to see how the fluid passes through her espohogus.  The long version is: Swallow Study.  Now, I had every thought in my mind that Olivia was not going to pass this test.  She still coughs and chokes when she drinks liquids that she steals from her brother and sister.  I convinced myself she wouldn't pass but wouldn't really admit it to anyone because my grandmother always says "thoughts have wings, so keep your thoughts positive".  So off we went to Children's for the day....and what a day it was.

As soon as Olivia's name was called for the test she started to get tense.  Once inside the room she began to freak out.  The look of fear in her eyes was like nothing I've ever seen with her.  The last time she had one of these tests was January 2010  so I don't know how she remembers it.  Olivia decided she was not going to cooperate and sit for the exam, so they repositioned the whole machine so I could get in and hold her through it.   That's what Children's does.  Anything and everything to take care of the kids.    Olivia took 3 sips of a drink and the speech pathologist called it off saying the ominous "She aspirated". the scary part was, she didn't cough or choke.     Now like I said, I prepared myself for this.  I knew this was going to happen.  Yet, tears started to roll down my face, and I couldn't even wipe them because I had Olivia in my arms.  They attempted to see if she could swallow a slightly thicker liquid but Olivia decided she was all done.  And so was I.    They all told me how sorry they were that she failed yet another study, but all I really heard was a bunch of rambling.  

We had an appointment with Dr. Rahbar across the street from the hospital immediately after.  While walking over I attempted to call my husband to tell him what happened and I couldnt get the words out.  I had to text him because I just literally could not speak about it.    Once we got into the office to see the doctor I successfully checked us in, wrote a check for the copay, situated Olivia, and once I sat down I just started crying again.  I must have looked crazy, but I couldn't help it.  An elderly man who volunteers for the hospital came over to check on me.  Now I was definitely the crazy lady in the corner.  All the while, Olivia was dancing all around the waiting room.  Having no idea why I'm upset, because to her, nothing is wrong.  

Once we met with Dr. Rahbar and his team, he explained that sometimes the anatomy can be perfect but the coordination is not.  He says that he has only had to do a second repair a handful of times in his career.   he also said he trusts my judgement on Olivia.  Of course he had to scope her nose as he always does, and of course it couldn't just be a quick thing because two other residents had to see as well, and here I am holding her YET AGAIN while she gets tortured by these people in the white coats.  

Essentially, we are at yet another bump in the road.  Dr. Rahbar asked (as other doctors have) if we thought about a neurological consult because besides outgrowing this, a brain issue would be the only other cause for her aspiration.    Yet, because Olivia acts very much like a "normal" two year old, has an extensive vocabulary and can walk and run with ease, the chances of a brain issue are VERY slim.  With that being said, I'm going to hold off on the neuro consult and spare my baby of more strangers examining her.   

So, the new plan is for Olivia to see a speech language pathologist who specializes in feeding issues monthly at Children's.  Dr. Rahbar will also be there for any issues that may arise.   Dr. Rahbar and the feeding team seem confident that they can "train" Olivia to swallow properly and that it's just a matter of learning.  

I guess I had high hopes for the cleft repair to be the end all to Olivia's LONG journey.  After all the research I had done I was confident that it just had to work.  Dr. Rahbar,  and her four other specialists all emphasized that it may not be the cure all. That it may work, but where it may not. I guess I didn't really listen to the "it might not" because all I wanted to hear was the "it will."    My heart is broken that it didn't work.  May sound ridiculous because there are so many kids far sicker than Olivia in the world.  I do realize that, and I feel for them, I really do.   But there is something about watching your own child suffer, and be fearful, and be put through test after test after test only to not have the results you wanted or needed.    

I have to trust that everything will eventually be OK.  There is an undying passion to make Olivia better.   The same as if anyone of my children were sick.   I will go to the ends of the Earth to make her better....and if anyone is up for the challenge, it's her. 

"But she looks healthy....."

Greetings!!  Catching back up after a delightful holiday season with the kids.  Olivia did very well, each day becoming a little bit more devilish, destructive, and mischevious.  And with each thing she does to drive me crazy a part of me thanks God she is able to do such things.

A few weeks back, Olivia had a cold.  Now to most parents, especially seasoned ones, a cold is no big deal.  To a mother who once counted her child's breaths per minute a cold sends a a mother into a full fledged panic attack.  So off we went to the pediatrician, who said if Olivia was any other child he would wait a week to investigate further, but given her history he wanted an immediate chest x-ray.  Let me express how heartbreaking and stressful a chest x-ray is on a toddler who doesn't want any part of such things.  You see, Olivia spent the first part of her life being poked, prodded and examined by well over 10 different doctors.  To this day, a doctors office inflicts a sense of anxiety over her.  As soon as a nurse calls her name she starts screaming.  And I can't say I blame her.  She has had more doctors appointments that her siblings combined in seven years.   At any rate, once the x-ray was over, and it was confirmed she did not have pneumonia I felt much better and so did her doctor.  Just a typical day being a parent to Olivia!

Now here is what I hear quite a bit.  "But she looks healthy".  Well yes, she does.  And she walks, and talks and will probably kick your kids ass if they try to take her toys but she is NOT 100% yet.  She cannot drink liquids.  Trying to tell a toddler they cannot drink a juice box like all of their playmates is heartbreaking.  To watch my baby literally try to drink bath water, but then know she can't and spit it out makes me incredibly sad.  And while yes, on the outside she is a beautiful little girl with a smile so bright she can light up an entire country, on the inside she is very delicate.    So what happens when Olivia steals a drink of something?  Well,  some days she will audibly aspirate, meaning we can hear her cough and choke.  Other days she will silently aspirate as she has done since birth and while the fluid is still going back into her lungs we can't hear it.   This isn't just some run of the mill issue.  This is a BIG DEAL.  I try to be patient when people ask me what is wrong with my daughter. IN my mind nothing is WRONG with her she just needs a little help.  Yet to try to explain is exhausting.  People don't get it.  So I just wish everyone would believe me when I say, I have spent more time researching her condition than I spent researching anything used to obtain my college degree.  I am confident I am the BEST caretaker for her and the ONLY one who knows 100% how to take care of her.  When I think something is wrong, I am almost ALWAYS right.    Looks can be deceiving.  I know because there was a time on the inside I was a total mess about her well being but no one would ever know it.  And to this day, I still get worried, I wonder what will happen in the future, I wonder if they will ever fix this, and stress out about all the things I surmise in my head.  But you probably wouldnt know that unless you are one of my close friends.

So here we are, almost a new year.  Olivia will be two at the end of February.  It seems like yesterday when I took the pregnancy test.   From that day forward, Olivia was a challenge.  She wouldn't show her gender on ultrasound, she had soft markers for Down's syndrome, she gave me extremely high blood pressure and forced me to be on bed rest for the last month of pregnancy but above all, she taught me how strong I am.  She gave me a sense of completeness. 

January 10th Olivia has her next swallow study and follow up with Dr. Rahbar.  I do not believe she will pass the swallow study.  While I try to remain optimistic, I can safely say I would be SHOCKED if she no longer aspirated.  And from there we need to examine more options, wheather it be waiting it out, a second laryngeal cleft repair or something else, I'm really not sure. At the end of the day, Olivia is one of three people I love more than anyone or anything in this entire world.  Nothing will ever stop me from getting her to where she needs to be.   Never ever take for granted a healthy child.  Let kids be kids, enjoy every moment, and above all, don't let the little things get in the way of the big picture.
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Giving Thanks

Any good parent is thankful for their children.   A parent of a sick child is thankful their child is still alive.   After several years of taking Christian and Julia's health for granted, the past two Thanksgivings, I have realized just how lucky I am.   I have mentioned Children's Hospital while saying Grace the past two years.    Its amazing what being the parent of a sick child will teach you.   

 I had identical, easy pregnancies with Christian and Julia.  They were born exactly 26 months apart, both on the 11th.  Their times of birth were very similar.  Their birth weights were 1 lb different.   They looked like twins.  Olivia was born on the 24th of February, weighed the least of the three, and I had a very difficult pregnancy with her.   She had a full head of dark brown hair (the other kids were redheads at birth).  Olivia was bound and determined from conception, to be DIFFERENT.

How much does it break my heart when Olivia brings me a bottle of water and cries for me to open it?  Words cannot even describe it.  Or when she steals a juice box from Christian or Julia and then goes into a full coughing attack from one sip.  And she knows its going to happen. Sometimes she will even spit it out because she's afraid to swallow.  BUT, and the point of this whole blog is the BUT....I'm actually quite lucky.  I really think all parents should just take a walk through the halls of Children's Hospital to have a appreciation of how lucky some of us are to have healthy children.   My daughter can walk, she can dance, she can talk, she can fight with her brother and sister and not miss a beat, she can light up an entire room with her smile.  She is going to LIVE a long life.  Maybe it will take a while before she works out some issues, but at the end of the day her prognosis is she will live a long, full, normal life.  I can't imagine the pain a parent of a terminally ill child must feel.  And I consider myself truly blessed beyond words that Olivia is who she is. 

So today, tomorrow and always, I will forever be grateful that I have three amazing children, who literally make my whole world complete.  Olivia is just my angel sent to make me stronger.  :)

BIG, BIG, SIGH.

So we had our meeting with the feeding team at Children's last week.  The feeding team is comprised of speech pathologists who intently stare at your child while they eat/drink.  Olivia decided she would give them something to stare at and continuously said "my mum" while pointing at me, and saying "NO" when they told her to take a drink.   My daughter for sure.    

We had reduced the thickness of her drinks by 50% when Olivia started showing signs of aspiration again.  At that point, it seemed even at 50% was too thin, So here we are again, at "nectar thick" liquids, which to me, look disgusting and I can't imagine ever drinking them, but Olivia doesn't really know much better.

My heart is broken for Olivia.  She begs me for water.   And if I give her even the smallest sip, she starts coughing and choking.  Yet she continues to try again and again, because she doesn't give up.  She is determined.  She's been through hell and back in 20 months and not once has she stopped smiling.  Not once has she slowed down.  And when the whole world seemed to crash around me, I saw the sparkle in my little girl's eyes that told me she would be OK.  I just never had any idea it would take this long.     You won't meet a happier child than Olivia.  There is just something about her that lights up a room.  

I'm not sure where people get the idea that they should try to diagnose Olivia or suggest treatment for her.   In the past 20 months, I've done more research on laryngeal clefts and their repairs as well as dysphagia and aspiration than I probably did in my 4 years of college.  And because of it's rarity there isn't all that much research, but I found what there is!  To argue with me incenses me, and by the way, it's rude.

This is what my past 20 months has been about:

Now, do you want to try to tell me I don't know what I'm talking about? 

If I could go through all of this for Olivia, I would in a second.  It literally hurts my heart to have to put her through all that she has gone through.  I know it could be much worse, and I'm thankful that it isn't.  It doesn't make it any easier though.  It doesn't take away the sting that there is something wrong with your baby.   I think back to when I was pregnant, I did everything I was supposed to.  I took my vitamins every day. I didn't drink, I didn't smoke, I didn't even take Motrin.  I can't help but wonder, what did I do to cause this? Maybe nothing.  But it will always be in the back of my mind. 

So now I wait to hear what Dr. Rahbar wants to do next.  It's been mentioned another surgery is possible.  I can't even describe the anxiety I felt the last time she had this surgery, but if it will fix her, so be it.  Ill go to the ends of the Earth for this little angel, I just want her to be healthy!

As always, the support I have received from friends  is overwhelming. I can't say thank you enough to those who have called, texted, facebooked, or sent a card  or gift.  I would lie and say I'm fine, but I don't like to lie.  I can't ever thank everyone enough, except maybe by treating others as compassionatelyy as my friends have treated me.   :)

Babies

It seems quite a few of my friends are having babies lately.  As I see their precious photos on Facebook, I just can't help but miss the days of when mine were so little.   And then, the harsh reality of Olivia's whole newborn life, even her pregnancy gives me a stabbing feeling in my heart.   I can only imagine what it felt like to be her.  To not be able to breathe, to not be able to eat, to be put under the countless tests she was.  I know what it felt like to be me.  An emotional pain so strong I still feel it when I think of it.   I can't even fathom what it felt like to be her.  So, sometimes, when I just want to sit and relax, and Olivia just wants to climb all over me, and hug me, and kiss me and say "love you",  I remember that I'm lucky Olivia is even here.  I remember that she is SO attached to me because I was the one constant in her life throughout her traumatic experiences.

Over the past few weeks, there have been some signs that Olivia isn't doing so great with the thinned out drinks.  As a matter of fact, she kept stealing drinks from Christian and Julia yesterday and last night her breathing sounded awful.  :(.    Just a little overwhelming.  I had these high expectations that by September she would be "all fixed".   Unfortunately it's October and we aren't even close.  Seems to me we may have even stepped backwards a bit.    In all the research I've done, I've read some cases where the cleft needs to be repaired TWICE for the procedure to work.  I can't even explain how much I hope this DOES not happen.

Next week we visit the feeding team at Children's.  Hopefully they can provide some insight on what it's going to take to get Olivia better.  Here's to positive thinking! 

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.  

My Little Fighter

In March 2009, I suffered a miscarriage.  While that is a topic for another blog, it is essentially where this all begins.  Desperate to become pregnant again, I was overjoyed to see two lines on test # 4578 on June 20, 2009.  From that day forward, I of course was a nervous wreck.  So terrified to suffer such a tragedy again.  I insisted on a ultrasound at 7 weeks because I was so scared.   I knew this could potentially be my last pregnancy, and wanted to savor every moment of it. 

Things went seemingly well, until October when I had my second ultrasound, and the tech told me that she couldn't get a clear view of the heart.  As if that didn't stress me out enough, the doctor later told me she actually found an ecogenic foci on the heart which would need to be reassessed. An ecogenic foci is a "soft marker" for Down's Syndrome.  My doctor, knowing how nervous I was, sent me to Boston to see a specialist.      I saw the specialist a few days later, and he saw enlarged kidneys in addition to the ecogenic foci.  He assured me that he felt that the baby (who he said was a GIRL!)  was perfectly healthy, but my chances of a baby with Down's just went from 1 in 2500 based on bloodwork, to 1 in 450.   My OB/GYN said that an amnio would determine Down's or not, but the risk of an amnio was much greater than my risk of a baby with Down's.  I knew I wouldnt terminate the pregnancy regardless, so we decided to take both doctors advice and didn't get the amnio.  For the remainder of the pregnancy I did have a horrible fear that something may be wrong.

On February 24, 2010 at 2:09 PM, a beautiful baby girl, Olivia Dianne Kelly entered the world via Cesarean on a rainy, cold day.   She was perfect.  7 lbs, 14 oz and 20.5 inches long.  AMAZING in every sense of the word.    When I was able to hold her I literally wept tears of pure joy because this little girl was finally here, and healthy!  I kept staring at her checking for signs of Downs. There were none.  And so we went home....and life began as a family of 5.

My husband took a job in Illinois 3 weeks after Olivia was born and it was up to me to take care of her and my other children, Christian and Julia.

And so it began. I have always been an obsessive mother. I check my children to make sure they are breathing several times a night.   One night, I didn't like the way Olivia was breathing and took her to the ER. They said it was a cold.  Around 2 months old, Olivia started vomiting every meal.  We both went through about 6 outfits a day.  We discovered Olivia was allergic to milk. Now the easiest solution to that would be to put her on formula. Unfortunately Olivia hated bottles. And after 12 hours of trying to bottle feed her, and both of us in tears, I decided I would just eliminate all dairy from my diet until she either outgrew the allergy or decided she would take a bottle. 

A few months went by, and by May I knew something was off. I brought her in to the doctor and they said it was broncholitis.  Two days later we were back because her breathing was distressed.  The doctor said it was an ear infection and that maybe her acid reflux was contributing to the breathing issue.  So off we went with some antibiotics

By July, Olivia's breathing was awful. She wheezed constantly.  She coughed a lot.  The doctor tried a nebulizer, that didn't work.  He then tried steroids, which I thought worked, but really was just hoping they did.   My days became filled with nebulizer treatments and antibiotics for the repeated ear infections. We were at the pediatrician at least once a week. Each appointment he would say her wheezing was getting worse than the last visit.  Her lungs sounded awful. I could feel the congestion in her lungs when I held her.   She had a chest X in late July that showed "reactive airway disease"  which is really a blanket term for when they don't know why there is any sort of breathing issue. He just kept trying and trying.  Eventually the doctor said we would have to go to Children's and see a pulmonologist.

The pulmonologist (who has since been fired and replaced) ordered an upper GI to assess reflux. Olivia showed no signs of reflux on the GI. In the meantime, we had set up appointments with Otolaryngology to assess her 4 ear infections in 3 months and Gastroenterology to assess her milk allergy.  One week we were at Children's 3 days in a row.

The pulmonologist then said we needed a sweat test for Cystic Fibrosis.  This doctor liked to stress me out.   The test came back inconclusive because Olivia didn't sweat enough.  That was a very bad day.  Next the doctor wanted to do a swallow study, or modified barium swallow.  We actually had an argument about her doing unnecessary testing on my 5 month old baby but I relented and decided we would have it done. The doctor said she really didn't think Olivia was aspirating, but the modified barium swallow would rule it out completely.

So on August 23rd, we went in for this swallow study.  My mother in law came with me.  I planned on another appointment in which i would leave with no answers. I could not have been more wrong.    The test began and it was very difficult for Olivia because she had not used a cup or bottle prior.   After a few minutes, she finally got a drink and I saw on the screen the liquid go down, and then right back up.  And that's when the team of medical professionals behind the glass exclaimed "She aspirated!"  I had no idea what any of this really meant at that time.  They tested a different consistency and again I heard "She aspirated".   There were probably 5 people in the room with me, and 4 behind the glass watching the video.  They told me they had to call the doctor for directions. Still none of this was sinking in. I thought, OK, they know what the issue is, they will be able to fix it.  I kept saying "They can fix this right?"  And no one would answer me.  I started to cry and the nurses comforted me but then escorted me to a waiting area while they waited for the doctor to call back.  After what felt like an absolute eternity they came back and said Olivia had to be admitted IMMEDIATELY because she could not ingest any liquids safely and would need to have a Naso-gastric (NG) tube placed.   Bear in mind, my husband is 1200 miles away.   Thank GOD for my mother in law who stayed with me, and even stayed while they inserted the tube and i went home to pack a bag of clothes for our week long stay.    I had NO idea this was going to happen.    Before i knew it, Olivia was on a feeding tube, had a whole team of doctors in and out of the room, and my sweet innocent baby girl was "broken" and I didn't know how to fix her.    I spent the whole night crying to the nurses. They all sat and listened to me and helped me through. After a week of teaching me how to care for a naso gastric tube, we were discharged to home care, where we would have a visiting nurse a few times a week.

I remember walking into my house that had just got our shipment of medical supplies.  Everything was a mess.  There were syringes, tubes, feeding pumps, IV poles, IV bags, formula, everywhere.  It was a disaster.   Olivia also decided she hated the tube. Who wouldn't?   So she would pull it out every chance she got.  And that was quite often. I said that i wouldn't be able to insert it myself no matter what they told me, but after the sixth call to the visiting nurse to replace it, I realized I had no choice but to figure it out.    Inserting a naso gastric tube is PURE TORTURE.  To have to hold down your screaming child, wrapped in a blanket to keep her from fighting, and then putting a tube in her nose down into her stomach is enough to make anyone vomit.  And then, you have to check the placement of the tube over and over again to make sure it isn't placed in the lungs, which of course, would be an emergency. But I did it, and I did it again and again. And I re taped the tube to her face again and again, and as much as she hated it, I knew it was saving her lungs, and her life.

In September, Olivia had ear tubes placed as well as a triple scope, of her lungs, stomach and throat.  They found significant signs of aspiration, so getting off the ng tube was a very small possibility.  They also discovered Olivia has a very mild Type 1 laryngeal cleft, which could or could not be the reason she aspirates.   Laryngeal clefts only affect 1 in every 10000-20000 births, and is considered a rare congenital disease.

By  mid September I couldn't deal with this awful NG tube anymore and the doctor said it was time for a gtube.  This would require another trip to the operating room, just 10 days after the first surgery.  At first, I was very sad that my daughter would need yet another surgery, but knew in the end it was best for her. No more pulling out the tube, no more stares from rude strangers.  She got the Gtube and was discharged the next day being dubbed a "rock star" patient by the nurses for being so happy.

Things were pretty quiet over the fall and the holidays.  Olivia was doing well, gaining weight and using the Gtube well.  She then was able to advance to thickened liquids by mouth which was a huge victory for her.  The doctors were even discussing the possibility of removing the tube all together in the Spring.   Unfortunately, Olivia failed her modified barium swallow test again on January 24th.  She is still unable to drink thin liquids. Namely, things as basic as water.  As of right now, we are waiting to see yet another specialist to see if a surgical repair of her laryngeal cleft is in order.  The surgery is complex, so the doctors don't want to rush it.     Our next stop is the Center for Digestive Disorders at Children's Hospital Boston.  http://www.childrenshospital.org/clinicalservices/Site2024/mainpageS2024P0.html    Until then, we will keep taking it day by day.

Everyone says that they don't know how I do it, how I hold it all together. The answer is really quite simple, I have no other choice.