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.