"There's A Girl In Texas"

"There's A Girl in Texas" who is, by almost any definition, really special.  She has been special since the moment she was born.  She is our family's pride and joy and Sunday, April 8, she turned 11 years old.  Happy Birthday, sweet girl!

This special girl is, of course, our double miracle girl, the light of our lives, our granddaughter,  Maddie-the-Great.   Before you go any further, I strongly urge you to take a few minutes and read her story in the following posts.  After you read her story, you'll understand a lot better, why I go on and on about this special girl.  (Go ahead, read.....take your time, I'll wait!)


Part I:  Against All Odds
http://mellodeemusings.blogspot.com/2009/11/against-all-odds.html

Part II: It's NICU time!!
http://mellodeemusings.blogspot.com/2009/11/against-all-odds_09.html

Part III: Life in the NICU and Beyond
http://mellodeemusings.blogspot.com/2009/11/against-all-odds_10.html

Part IV -- The Week When Time Stopped
http://mellodeemusings.blogspot.com/2009/11/against-all-odds_13.html

Part V -- Our Second Miracle
http://mellodeemusings.blogspot.com/2009/11/against-all-odds_14.html

Part VI --  Addendum
http://mellodeemusings.blogspot.com/2009/11/against-all-odds_1208.html

So, are you back??  Did you read it all??  Do you see why she is so special, at least to us?  Of course you do!  She is Maddie-the-Great for good reason!

Those health issues are all over with now and we are grateful.  M-t-G is completely healthy, suffered no consequences of being a preemie and on top of that she has been cancer free for eight years!  There are other ways that she is special too.  She is extremely bright.  Seriously bright, not just proud- Grandma bright!!

At the end of this school year she will "graduate" from elementary school and will be promoted to Middle School (6th-8th grades).  Kids in Austin have several options for Middle School.  Most of the kids go to one of the public Middle Schools as assigned according to the School District boundaries, but in addition to parochial or private schools, there are four other options.  There are three Middle School Magnet schools which focus on different areas of interest.  One is performing arts, one is law and international studies, a third (KMS) is an academically rigorous program, and the fourth is the Anne Richards School for Girls.  Application to these four consists of academic records (grades), special needs (gifted kids), and individual essay. 

M-t-G applied to KMS and Ann Richards.  Ann Richards School is a program established by the late Texas Governor, Ann Richards, to provide educational opportunities focusing women and opportunity.  Richards was also specifically established to provide opportunities for the financially disadvantaged girl.  Their enrollment is structured to be 75% from economically depressed neighborhoods in the city and the remaining 25% of the enrollment is selected by lottery of eligible applicants. 

Our girl was accepted at KMS and  was accepted/eligible at Ann Richards.  Whoo-Hoo!!  That's our kiddo!!  Although accepted/eligible at Ann Richards she was not selected in the lottery.  She may reapply next year or any following year, but I don't know that she will because she is REALLY excited at being accepted at KMS!  It was really her first choice.  There were 800+ applicants to KMS, of which about 200 were accepted and our Maddie was one of them! 

I think it will be a good choice for her.  She needs the challenge of being with other very bright kids.  School has been easy for her, straight As more often than not with not much effort.  KMS has an interesting curriculum and many electives are offered that challenge the kids in unusual ways (e.g., Physics through Cooking).  For the first time M-t-G may have to work a bit harder, but that's a good thing!

Of course, we are extremely proud of her!  She has already taken her Math placement test and she is awaiting the results.  She also has auditioned for the KMS Orchestra (she has been studying violin for four years) and it was indicated that she will most likely be accepted.  She's looking forward to that too!

Maddie has such a broad range of interests....she loves American History (especially WWII and the Civil War eras), she loves math, she loves music, she likes to be physically active, she is taking Tae Kwan Do and has already achieved several different colored belts (I've lost track of what level she is at currently), she is still in Girl Scouts, she loves to swim and roller skate (not at the same time!)  She wants to take up archery!  She loves horses and riding.  Nine times out of ten, when she watches TV, she watches the History or Discovery channels. Her vocabulary is outstanding.  She reads constantly (when she's not doing any of the other things she does!)  Her reading comprehension level has been identified at the High School Senior level and above!  As I said, she's an interesting kid!!

She, like every other kid, has some things she struggles with.  She likes to be in control.  She is feisty.  She has a temper that can get nearly out of control.  She is also approaching the time that hormones kick in and put her on that emotional roller coaster of the Tween/Teenager.  Every parent of girls has experienced that time when all of a sudden their happy little loving sunshine girl into a sad, miserable unhappy lump!   We have seen glimpses of that with our girl, and the next few years could be challenging for us all.

A few weeks ago M-t-G was upset about something with her mom and dad, and it slid into a melodramatic meltdown mode, with yelling, and tears, and "nobody likes me, I have no friends, you don't understand, you won't let me do anything, you don't love me!"  In between the dramatic sobs and the litany of being unloved, she paused, then sobbed out, "I am, of course, speaking metaphorically!!"

Oh yeah, she's our Maddie-the-Great!  She's a pistol!   I mean, really, how can ya help loving a kid like that??!! 

"Dear Hearts and Gentle People"

In my lifetime I have personally known four victims of childhood cancer....

Julianne -- Leukemia -- Died at Age 11
Jenny -- Hodgkins Disease -- Died at Age 15
Stacy -- Brain Cancer -- Adult, Survivor, Cancer-Free 25+ years!!!
Maddie -- Hepatablastoma -- Age 9, Survivor, Cancer-Free 5+ years!!!

Four girls, 2 Survivors and 2 Fatalities == That is unacceptable, or at least it should be!!

Every day 46 children are diagnosed with one of the 12 kinds of Childhood Cancers. EVERY DAY!

For 9 of those kids the diagnosis is a death sentence. That is, 20% of those 46 children will die at some point as a direct result of that diagnosis.

Childhood Cancer is the leading cause of death of children from infancy to 20 years old.

The treatments and drugs aimed at children with cancer are, in and of themselves, toxic and debilitating with terrible side effects. Unbelievable as it might seem, there has only been ONE new drug developed for treating childhood cancers in the last 20 years!! ONE DRUG! Meanwhile, children continue to die!

If you are on Facebook you may have seen that there is an effort going on to gather people together who support asking Oprah Winfrey to do one of her programs on Childhood Cancer in an effort to increase awareness, increase funding and increase research for a cure! In the last three weeks, 26,700+ individuals have joined the cause. That's amazing, but there are millions of folks on Facebook, we need more to join up to support this. Attention must be paid and Oprah is powerful and influential enough to bring about great things. We need for her to do this because no one else has that same influence.

“Dear Hearts and Gentle People who populate my  bloggy world, PLEASE read through the posting below. If you want to support the effort, make mention of it in your blog!  Then go to the Facebook page link (below) and hit "Like" and "Share" to add yourself to those 27,000+ followers. Won’t you please help? We need more RESEARCH! We need a CURE! We need less TOXIC treatments! We need these kids to LIVE! We need YOUR HELP!

Oprah Please Do A Show On Childhood Cancer - Our Kids Need Your Help

How can it be that childhood cancer is the NUMBER ONE disease killer of children under the age of 20, yet we hear almost NOTHING about it? It kills more children than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. There are no national telethons to bring awareness to it, no major celebrities that we automatically 'connect' to it and most people don't even know what a gold ribbon represents (yet we ALL know what a pink ribbon represents!)


Statistics bore me. They usually just go in one ear and out the other. Then in December of 2007 one of my best friends ended up in the emergency room of Children's Mercy Hospital. (see their story here: http://www.unitedweridekc.org/braden.html) Her 3-year old son, Braden, was diagnosed with Stage 4 neuroblastoma. Horrible odds - and if it relapses - no known cure. He DID relapse. By the Grace of God he is still with us today - but we don't know how much time he has left. His mom got diagnosed with Stage 2 breast cancer recently, too. She learned more in her first one-hour doctor's appointment about her breast cancer...than she has in almost THREE YEARS about Braden's cancer! She's thankful for all the research and treatment options available to her - as they will likely save her life. But doesn't Braden and all the other kids who have cancer deserve that same shot at life? Statistics on childhood cancer mean something to me now. (please go to the left-hand side of this page and down to Photos and look under "Wall Photos" where I have posted some VERY eye-opening statistics!)

Along this journey we have met MANY brave children, parents and families who have fought.... or are still fighting this awful disease. Their stories are HEARTBREAKING and their courage is AMAZING. Our mission is plain and simple. We're hoping that OPRAH, during her last season on air, will do a show on some of the heroes who are currently fighting and some who have lost the fight with this nasty disease. The world needs to hear about their courage, their fight, their families and their lack of treatment options because of the lack of funding and awareness. In doing this, we're hoping that a light can finally be shone on something that NEEDS to be seen!

Our hope is that through the power of social networking - we can show the world...and Oprah...how important this issue is! In that light - we are trying to use Facebook AND Twitter to make this happen!!! If you're on Twitter, we appeal to ask you to follow us and help us spread the word. There are 5 of us working toward this cause and you can find all 5 of our Twitter addresses at the top of this info! Follow our tweets and retweet every, single tweet you can!! On Facebook - we hope you share this with EVERY, SINGLE PERSON you know so we can grow this page FAST and show an AMAZING amount of support for this cause! There are many independent childhood cancer causes, pages, foundations, etc. We need to ALL band together now and focus on the BIG picture for childhood cancer in the same way the Susan G Komen Foundation did for breast cancer! We are stronger, collectively, as a GROUP....there is STRENGTH IN NUMBERS! If Facebook can get Betty White to host Saturday Night Live - let's see if it can get Oprah to spotlight childhood cancer!

Celebrate" Addendum:

If you have read the posting below and you are interested in what happened that brought us to this milestone, the saga of Maddie's life is posted in six earlier entries over November 8 through November 14, 2009.

 Check it out.  I promised, it is a remarkable story.  (Follow this link to the first entry.)

http://mellodeemusings.blogspot.com/2009/11/against-all-odds.html

"Celebrate!"

Somethings we "Celebrate" every year.... Christmas, birthdays, and the like.  Other things we celebrate only when they actually happen.... promotions, engagements.  And still other things we celebrate because they are so very important that they deserve a special acknowledgement. 

Today we celebrated one of the most important events in the history of our family.  Today, February 1, 2010, an enormously critical milestone has been reached.  Today Maddie has reached the Five-Year Cancer Free anniversary!!  Our miracle girl has gone through those five years with absolutely no sign of any possibility that the disease will return.  We can truthfully say that Maddie has been cured of cancer!

All cancer victims dream of reaching that goal, and sadly so many  never get there.  Their cancer recurs and they must once again deal with the uncertainty, the pain, and the fear while they go through another round of treatments that are nearly unbearable.  And if that treatment is successful and the cancer goes back into remission, they must start that countdown clock back to the beginning and hope that this time they will reach that Five Year mark and be labeled "CURED". 

Of course, when you have a child that has fought cancer, that can never be taken for granted.  There will still be bloodtests from time to time and vigilence on the part of her parents to watch for any small sign that something is amiss.  But today and for the next little while, my family can breathe a little easier.  Ratchlet and T.A. can relax a hair, knowing that this important goal has actually been reached.  For the first time in five years, they can say that their daughter is completely healthy!  

We are all grateful beyond belief for the good wishes, prayers, novenas, support, and concern that we have received from our friends, family, and even some relative strangers.  Thank you!  We are grateful to all her doctors and the surgeon.  Thank you!!  And we are grateful to God and all the angels and saints for this wonderful day!  Thank you!!!

It feels as though a hundred pound weight has been lifted from our shoulders and even tho this day will be cold and grey and possibly rainy, to us the sun is shining because our Maddie-the-Great has beaten the odds!

Who knows where her life will take her.  But of one  thing I am absolutely certain; she will do whatever she sets her mind to do.  After all, she's Maddie-the- Great!!

  

Dancing in the streets will now commence!!!

"Saturday in the Park"

As I told you, the Big Guy and I spent "Saturday in the Park".  So I wanted to let everyone know that we had a very successful CureSearch: Walk for a Cure.  There was an outstanding turnout with lots of teams. Although it was cold (in the high 20's, I think), it was bright and sunny with no wind. So everyone was pretty comfortable.  The Walk was extremely well-organized, in no small part because of the work my wonderful Ratchlet did to make it all happen! There was even some TV coverage!  Publicity is never a bad thing.

Before the Walk actually got underway, the activities included presenting individual medals to each child in attendance, who, like Maddie,  is fighting or has won against this killer.  Also in a very touching moment, white balloons were released by families in memory of the kids who lost that fight. Those balloons were beautiful as they floated away into the clear blue sky!   It was sad but so hopeful.


Because of the generousity of so many people, $25,000  was raised for CureSearch!  Not bad at all for a first effort!  They are already talking about "Next Year" when, it is hoped, everything will be even bigger and better.  After all the fight against Childhood Cancer is not over yet.  But it will be someday if CureSearch and all who were part of the Walk have their way.  That's a goal worth aiming for.


Just as an aside, Ratchlet and M-t-G did indeed go off to a Girl Scout Overnight Camp that evening.  Even though all they had were their sleeping bags to lay on the cold floor of the unheated cabin!  The girls reportedly had fun anyway.  The resilience of kids is amazing.  M-t-G is absolutely fine.  One the other hand, for grown-ups that resilience is much more limited.  When I spoke to Ratchlet on Sunday, she was congested with a sore throat, worn out, and just about done in.  She sounded horrible.  Today she didn't sound much better.  That's not much of a reward for her hard work over the last few months.  But she is undaunted and getting plans started for the next walk.  There's one thing about next year's "Saturday in the Park" that's already written in stone....the Walk will be in October not December!! 

"On the Sunny Side of the Street"

It was only 28 F when we left the house for the CureSearch: Walk for the Cure yesterday morning.  As will surprise absolutely no one, I was bundled up like Nanook of the North.  My layers had layers!  I had a on Down coat with a big hood with fur trim....the heaviest socks I own (even though they didn't match anything else I was wearing!)....long-sleeved turtleneck....a camisole....all the regulation (ahem) undies....a heavy long-sleeved sweater with a high neck....heavy-weight jeans....a knit hat pulled down over my ears....a scarf around my neck....and wooly-lined suede gloves in which I could not bend my fingers.  Hey, I'm from Chicago, I know how to dress for cold.  I was READY!

When we arrived at the site and located T.A. (our team leader) and M-t-G (both dressed appropriately I might add), I had some time to look around a bit.  As far as I could tell there was only one other person dressed in a down coat with a hood (although the coat was not zipped and the hood was not up).  The other Nanook was none other than Ratchlet, also from Chicago, who was also READY for the cold, the wind, the wind-chill, the gray skies, and a day more like Chicago than Austin.

No one else seemed quite so prepared as we were.  There were jackets and some hats of course, but nothing that seemed like it could stand up to the cold.  I even saw a few teenage-types wearing only a sweatshirt over their regular clothes.  The mother in me really had to restrain herself from going to each one and insisting they go home for a real jacket!  Well, before I made a total fool of myself, I finally got in touch with reality.  There wasn't a cloud in the sky.  The sun was shining bright in the middle of a beautiful blue sky.  There was absolutely no wind, therefore there was no wind-chill.  It was still cold but NOTHING like a cold wintery day in Chicago!! 

There were speeches and announcements and things (more on this later) and then it was time to walk!  As we headed out onto the path laid out for the Walk, we were walking on a street that was sunny curb-to-curb! After about 5 minutes of walking, my hood came down, then the gloves went into my pocket, and I unwound the scarf.  It was practically balmy!  I have no idea what the actual temp was by this point, but it sure wasn't bitterly cold, like I expected.  What a great surprise.  What a great day for a Walk for a Great Cause!!

By the time the walk route was complete nearly everyone had opened their jackets, and headed straight for the cold water being distributed.  Mikey and M-t-G who, along with some others, had been carrying the banner and setting the pace, came up to the water station with sweaty heads and hats and gloves banished to pockets.

Still and all, I am glad we dressed as warmly as we did.  It probably was the insurance we needed that the day would be perfect!   After all it was "the sunny side of the street" all around us!   

As things were finishing up, I happened to catch sight of the sweatshirt contingent.  I was just a tiny bit vindicated....they still looked COLD!  Silly Texans!  Haven't a clue on how to dress for the weather!  Turns out, though, in Austin, neither do I!!

"Against All Odds" Addendum

I have mentioned several times in telling her story, that Maddie is fiesty. I would be extremely remiss if I didn't tell you of one incident that occurred that shows exactly what I mean.

As I said, Maddie had a catheter which had to remain in place until she began to have normal kidney function post-surgery. Now if you have ever experieced this delightful gadget, you will know that there comes a point where it becomes extremely uncomfortable. Well, Maddie hit that point Thursday evening. 

We were all in her room just to be with her and to try to keep her entertained. (Believe me, its not easy for an active 3.5 year old to be pretty much confined for 3 days in a bed that's only 4x6! 

Somewhere mid-evening the catheter became really bothersome and Maddie was (for the first time) in pain. She began to cry and whine in that little voice that every parent knows well.) "Mommy, take it out. It hurts. Please Mommy, take it out." Ratchlet and the nurse tried to explain that it couldn't come out yet and why. Didn't matter to Maddie. "Please Mommy, take it out." Over and over, repeatedly, over the course of what seemed like hours. We could see that it hurt and she was trying her best, but she wanted it gone! It was heart-breaking!

All of a sudden, Maddie sat straight up, and in a very adult voice with no trace of tears or whine, said loud and clear, 

"If you don't take this out right now, I'll say...... dammit!!"

She was 3 and a half years old. That was the very worst thing she could think of to do. It was the only threat she had.

I have never before or since heard anything that was so funny and so unexpected. The 6 adults in the room, almost as one unit, exited into the hall outside her room and exploded with laughter. It was Maddie all over! 

Strong-willed??  Oh, yeah!  Fiesty??  You'd better believe it!!

"Against All Odds"

Part V  --  Our Second Miracle

The day of Maddie's surgery was the longest day of my life.... waiting to hear something, anything.  At that point I couldn't have told you what day it was, what time, possibly not even the month.  We just sat there Ratchlet, TA, TA's mom, Mikey, and me.  Oh we would make desultary conversation occasionally, but often it would just kind of fade away with no point.  Frequently, it was more the, "What do you think is taking so long??"  or "She'll be fine, right?" variety.  Now and then someone would start to cry from the worry.  We could have been there 3 days or 3 hours, it was immaterial.  There was only one thing we could focus on, when was the surgeon going to come out and talk to us....and even more frequently, "please God, let her be all right!"

I have no recollection the time the surgeon finally came into the waiting room.  What I remember is seeing the door open and there he was.  He told us that the surgery had gone well and that Maddie was in the Recovery Room and would be for a while. 

Then he got to the part we were dreading, what they found.  There indeed was a tumor, about the size of a small grapefruit!  They did a biopsy and it was malignant.  My stomach dropped to my toes!  HOWEVER, he went on.  The biopsy showed a Stage I cancer (extremely early stage), the tumor had been completely external to the liver, and they had been able to remove it entirely, with clear margins all around.  Maddie's  type of cancer (tumor of the liver) was called an Hepatablastoma.  It was extremely rare, happening in only ONE IN A MILLION BIRTHS!  The treatment protocols for Hepatablastoma with Stage I, complete removal, and clear margins was  NO FURTHER TREATMENT NECESSARY!  

WHAT?  No Radiation?  No Chemo? No nothing???  No, nothing except monitoring.  We couldn't believe what we were hearing.  No additional treatment at all.  I asked the doctor, "Okay, help me here, are you saying that yesterday Maddie had cancer and today she doesn't???  He answered, "Yeah, that's pretty much it."   In essence, it was over!

We were euphoric, as you might expect.  Our little girl, our Maddie-the-Great, won out over cancer!

Later, after we had come back down to earth, we learned that there would be a regular schedule of monthly blood tests and frequent ultrasounds and MRIs that would diminish over time as long as there was no reappearance of the cancer.  The blood test, we learned, would measure a protein called by the acronym AFP.  Evidently this protein is an indicator of the presence of cancer in the body.  I am unclear if it is specific to Hepatablastoma, but that was what they would watch.  In a healthy child the "normal" level is anything under 9 (of whatever unit they were measuring).  Before Maddie's surgery her AFP level was over 9,000!!  [A month after the surgery Maddie had the first of her post surgery blood tests.  The AFP level was around 7.  In subsequent months the level dropped to between 2 and 3 and has remained there ever since!]

Maddie returned to her room later that afternoon, as she still under the effects of the anesthesia, she had an IV, and a catheter and a 10-inch incision site that ran from her right side around to just under the middle of her ribcage.  Nevertheless, she wasn't in any pain, she slept a lot, and was doing fine.  She spent Thursday and Friday being monitored and receiving post-surgical care.  They got her up and walking fairly quickly. Our biggest challenge was to try to keep her from trying to move around too much.  She was getting restless but that was to be expected.  Saturday morning she was released and returned home.

It was about then that I returned to normal breathing, the clocks started moving again, and we returned to the real world.   The entire thing, from start to finish, had happened in exactly 6 days.  SIX Days!!! 

In February 2010, Maddie will reach the 5th anniversary of her surgery.  It is that important 5 year milestone of being CANCER-FREE that every cancer patient hopes for.  Today she is a normal, healthy, very smart 3rd grader who loves to read, play softball, and is a Girl Scout.  (She's also tall for her age!  Go figure!)

Now if there is anyone out there reading story who doesn't think this is a miracle, I can only say, this is the truth, and as far as I can tell, there is no other explanation possible.

Twice in her 3.5 year lifespan, Maddie had, "against all odds," overcome a serious condition which could have ended her life....but didn't!

Maddie-the-Great is our double-miracle child, and she will be surrounded by her thankful family all of her life!

 

"Against All Odds"

And now, back to our regularly scheduled programming....

Part IV -- The Week When Time Stopped

Maddie-the-Great hit her first birthday and discovered she loved cake.  She was soon walking and talking and learning to love words.  She hit Two and then Three getting cuter, funnier, smarter, every single day.  She was still dealing with temper and other not-so-wonderful traits, but all in all she was what she had always been...a fiesty, on the money, normal, little kid.  She was the apple of everybody's eye!!  What joy!  And boy, was she treasured!!  Life was good.

Just two months shy of her fourth birthday, she began to have some tummy problems (that ultimately turned out to be nothing out of the ordinary).  Maddie was referred to a Pediatric Gastroenterologist to check things out.  TA was out of town on tour with "Phantom of the Opera" and was gone for several weeks.   So Ratchlet took M-t-G to the doctor by herself.  It was Monday.

For me, time and life came to an abrubt standstill early that Monday afternoon.  I was at work when the call from Ratchlet came in.  The instant I heard my daughter's voice, I knew something dreadful had happened and fear descended on me like an unwelcome nightmare.

I really can't remember exactly what all she said, all I remembered were the words "Maddie" and "CANCER".  Oh my dear God in heaven, WHAT did she say???  Have you ever experienced the feeling that suddenly all your air was cut off?  I felt like that, I couldn't breathe, but I started to cry just the same and I moved directly into panic.

I rushed to the Children's Hospital where Maddie had been admitted!  My daughter and granddaughter needed me, nothing on this earth could have kept me from being with them.  I was terrified and I still didn't understand.  What had happened?  How could she be so sick? How could she have cancer???  How could it be so bad that she was immediately admitted to the Hospital?  That doesn't usually happen until much further into an illness.  This was our miracle child, we had already paid our dues when she was born, we thought.  Surely, it was a mistake.  This could NOT be happening.

When I got there Ratchlet told me exactly what had happened that morning.  They had gone to the Gastro doctor as scheduled and during her physical exam of M-t-G's tummy, she said, "It seems that one side of Maddie's liver is a bit enlarged.  That's not unusual, this happens to a lot of people." 

Then she said the words that saved Maddie's life, "Let's get an ultrasound, just to be sure." 

She was just being thorough, she didn't really expect to discover anything problematic.   Nevertheless, my family and I will be eternally grateful for her thoroughness.

When the results came back, the scan showed that there was a tumor or some type of growth on one side of the liver.  When she talked to Ratchlet, she told her about the growth and indicated that it could be malignant.  She immediately admitted Maddie, to do further testing to determine exactly what they were dealing with. 

Ratchlet had, of course, immediately called TA in whatever city he was in.  To this day, I don't know how he managed it, but he was at the hospital later that same afternoon.  Mikey had come to be with us as well. 

TA is the calm one in the family, he doesn't show his emotions very much and Mike refuses to ever believe the worst will happen.  His position was, don't panic until you know something for sure.  Whereas Ratchlet and I are exactly alike....we go immediately into trying to anticipate the worst case scenario.  (Makes for some interesting conversations in our house!)

Maddie on the other hand was a different story all together!  She didn't feel sick.  She didn't look sick.  Tuesday was the testing day. The tests were all painless, except for the sticks for the blood work, but that was over pretty quick.  So this was an adventure.  She got to go to the hospital!  She got to eat in bed!  And she got cookies and applesauce, and ice cream!! She could go to the playroom.  They had toys and books!! She got to play in a bed that would go up and down!   And they had wagons for going for a ride in!  She was having a great time.

Somewhere in there, the doctors came and said they wanted to operate!  The next day!  They needed to biopsy the growth and remove it.  Oh heavenly day, Surgery!!  She was just a baby!! By this time, I was practically numb.

Ratchlet and TA, of course, had to explain to M-t-G what was going to happen the next day.  Both of them were absolutely great with her, they were calm and didn't panic or get hysterical.  They were merely matter of fact and supportive.  I 'm pretty sure she didn't really understand, but she was OK with it, especially when she found out they had little cars that she could ride into the OR. 

So Wednesday morning very early, she jauntily waved bye-bye to Poppa and Grammy and off she went in the little car with Mommy and Daddy and an IV already attached to her arm, beeping the little horn the whole way. 

I was scared to death as we settled in to wait. 

Part V --  Our Second Miracle

See you tomorrow!

"Against All Odds"

Part III:  Life in the NICU and Beyond

This is where Maddie's miracle really began to kick in.  We were all frequent visitors to the NICU, to watch the baby and wait.  Ratchlet and TA, of course, were there the most;  Mikey came when he could; and I was there about 5 nights out of 7.  I generally came around 10 p.m. and stayed until after midnight, I am a night person after all. I felt that was Maddie's and my special time.  It was quiet, peaceful, low-key, without the harsh neon lights and loud noises.  I would talk to her, occasionally touch her tiny hands, and I would sing her lullabies.  And Maddie would sleep and eat and grow.

Ratchlet and TA were allowed to finally hold their child.  It seemed like forever, but eventually the rest of us had our chance too.  Cradling that child in my arms for the first time was one of the happiest days of my life.

And she continued to grow a little bit each day, measured in ounces.  Over time, one by one the wires, tubes, and sensors went away....all except for the heart monitor.  That would be with us for a while.  She began to fill out a little and look more like a baby should look.  She was beautiful.

Preemies, especially early preemies, can have an enormous numbers of problems, from Cerebral Palsy all the way to deafness, and everything in between. All of the tests they did to identify possible problems came back fine.  Against all the odds, this baby just quietly and peacefully stayed on track.  One day at a time, one step at a time. 

Nine Weeks in the NICU seemed like an eternity but eventually, at last, she reached that coveted milestone.  Her weight hit the magic number:  5 pounds!!  Maddie could come home!

It was a little frightening in a way.  There was still so much that could go wrong.  The heart monitor would go off fairly frequently, scaring us out of our skin.  Soon we realized, that the leads could become disconnected very easily and the alarm would start screeching.  That monitor never, ever went off because Maddie was having a problem. 

Still Maddie stayed steady on the course and became the treasure that she is.  We soon discovered too, that our little angel had a temper!  Just like the doctor said in the delivery room, "Oh, she's a fiesty one!"  But that meant she had a strong will and that was something that would be valuable to her her whole life.

We kept watching for signs of developmental or physical problems.  The possibilities that did appear were non-issues, none of our worries ever came to pass.  She was healthy, smart, curious, and had her own timetable for lots of things. Most of all she was a joy!Our miracle baby was on her way!

We thought one miracle was pretty amazing and we never expected to need another one....but we did.

Part IV:   The Week When Time Stopped

See you tomorrow!

 

"Against All Odds"

Part II:  It's NICU time!!

When I left you yesterday, Maddie-the-Great had just been born!   Her birth weight was One Pound, 14 ounces, and she was just 13 1/2 inches long!  It was not an error.  Unbelievable!  We were both thrilled and shocked.  So unbelievably small.

[I don't know why, but I never really understood how much danger Rachtlet was in from the Preeclampsia.  It wasn't until the next day that I finally realized that she could have died!!  Wow!  How could I have missed that?  It is my nature to be a worrier.  In this situation my attention and worry were mostly for the baby.  If I had realized the danger to both of them I would have fallen apart.  Somehow, though, somewhere deep inside I was certain they would both be fine.]

Just a little alert, some of the details have gotten a bit fuzzy over time, so some of the sequence, etc. may not be exactly correct.

So the newborn preemie, M-t-G, after a very quick stop at mom's side in the delivery room, was whisked off to the NICU (Neonatal Intensive Care Unit), where she was placed in a crib with open access.  A very large number of sensors were attached to her, each one a monitoring device of some sort:  pulse rate, respirations, oxygen levels, and temperature are the ones that I remember most. They were all being monitored constantly and should any of those levels spike or drop or anything, loud emergency warnings would start up immediately.  Let me tell you, that is one terrifying sound!   Still, the NICU staff was closely in attendance and ready for anything.  They inserted an IV line, just in case they needed to get medications to her in a hurry if it became necessary.

After several hours, we were finally allowed in to see her (after scrubbing), for the first time.  It was heartbreaking.  She was sooo tiny, there of course, was no extra tissue to fill out her little body yet.  She was literally skin and bones. You could hardly see her with all the lines and tubes and sensors stuck to her. Her color was pretty much red.  Still, she had a little light hair underneath the little cap, she was breathing on her own, and sleeping, all worn out from being yanked into the world so soon!  I fell in love instantly.  We all did.

Well, most of us did.  My darling, Ratchlet, who had been part of every single scary moment, and the one who needed to be with her baby the most, didn't get to meet her daughter up close until the next day, as she was still recuperating from the C-Section!   That was very hard on her.  Of course, she was already in love with this tiny gift. 

We were told that preemies, especially at this stage, cannot tell the difference between pleasure and pain, so none of us could hold her, or pick her up, or even touch her over-much.  Truth be told, I think we were all a little afraid of causing this child any more trauma. She was not easy for us to look at, knowing how much struggle she had ahead of her.  Nevertheless, nothing would have gotten me out of that nursery until they made us leave.  It was enough that we could be with her for however long it was allowed.


Caption:  Here she is with her Daddy's hand nearby.  I've never seen a finger so tiny!!

As I said, she was breathing on her own (which was absolutely amazing to everyone!).  When she was 8 hours old, they decided to put her on the respirator so that her little lungs didn't have to work so hard.  A bit later they added  blue light phototherapy, to head off any signs of jaundice, and I think it was the next day that the feeding tube went in.  (The littlest preemies don't have much of a sucking instinct, so this is the only way to initially get nourishment into the baby so she could start to grow.)

The absolutely amazing thing to me both then and now, was that no one....no doctor, nurse, technician or caregiver....ever said anything to make us feel Maddie was in danger.  There was no "make or break" moment.  We never heard anything resembling a warning that she was at a critical point of any kind.  There was no backward step, no crisis.  Maddie the Great was going along exactly as she should, doing exactly what she needed to do. 

She continued doing exactly that for the next 9 weeks!


Part III:  Life in the NICU and Beyond

See you tomorrow!

"Against All Odds"

Maddie-the-Great really is great and fully deserves the designation for she is a double-miracle child!  Really!  As promised  I am happy to share with you the journey so far.  This is a long story, so in the interest of keeping both you and me interested in finishing it, I'll tell it in installments of sorts.

Part One:  Maddie's first miracle occurred when she was born. 

Our entire family was so excited that Ratchlet was expecting.  We had just decided to move to Austin and were in the process of selling our house and packing up to move when we learned we were going to be grandparents!  "What perfect timing", we thought.  "Must mean moving there is the right thing to do!"  Little did we know how right it was going to be.

We made it to Austin and settled in, thrilled to be so close to our daughter and son-in-law.  The pregnancy seemed to be going well as far as we could tell.  Ratchlet and I were having great fun preparing for the baby.

Ratchlet was only in her 29th week of pregnancy when her OB discovered that she developed a sudden and severe case of Preeclampsia, a condition which develops in some pregnant women (although no one know why!)  It causes dangerously high blood pressure in the mother, and can also affects the baby's growth.  Evidently Ratchlet's BP was through the roof and the baby didn't seem to be growing at the correct rate!  

She had gone to her OB for her regular Thursday check up, not realizing anything was amiss.  Well, the Doctor said she needed to be in the hospital, RIGHT NOW!  She also mentioned the dreadful phrase Emergency C-Section!!

TA called Mikey and me at home to tell us what was happening.  My first thought was, "It's too soon.  Way too soon."  Ratchlet was at 29 weeks, she still had at least 11 weeks more until her due date!!  That's very nearly 3 months more!! She couldn't have the baby now.  The child would never survive.

Well, it appeared there was no alternative, so we went to the hospital to be with them and do what we could.   When we arrived the staff spent 3 days giving medications to reduce Ratchlet's BP to a low enough level to do surgery and something else to help strengthen the baby's respiratory system.  It was a done deal.  Both baby and mom needed to have this C-Section as soon as possible.

They decided to do the C-Section on that Sunday morning.  Actually, it turned out to be Palm Sunday and I went to Mass in the hospital chapel that morning.  The priest was distributing the blessed palms so I took several.  The actual date was April 8.  It occurred to me a little later that April 8 was my Grandmother's birth date as well.  I chose to take that information as a positive sign. 

Only T.A. was allowed in the delivery room, of course, so we tried to find a place to settle in to wait.  Less than 15 minutes later, before we had even figured out where to go, T.A. came out of the Delivery Room.  My stomach dropped and I was sure it was bad news.

"It's a Girl!  She weighed 1 lb. 14 oz. and was 13 1/2 in. long!" Ratchlet was fine, came through it perfectly.  The doctor told him that the baby came out crying, breathing on her own, with Apgar scores of 8 and 9, and seemed to be doing great!!

Madeleine Elizabeth had arrived!


Part Two :  It's NICU time 

See you tomorrow!