Wednesday, November 7, 2012

November 7, 2012

Dad fought the biggest fight of his life and today he was finally captured by this awful disease. The love and support from the friends has been heartwarming. The kind words so refreshing.

Last night his breathing was fast and shallow and it carried on to this morning. His hemoglobin was at 1 and he was suffering from alkalosis. The doctors (all 8 of them) said they had never seen anyone alive with a blood count that low. What they found even more impressive is that not only was he alive, but he was coherent and in absolutely no pain. The hours before he left for the hospital were intense and such a whirlwind of emotions. Dad was always afraid to go to the hospital. He said that if he went there he knew they would kill him, and for this same reason he didn't want chemotherapy. The problem is we weren't given any other alternatives except for him to waiver in his beliefs and accept the blood transfusions in order to receive the chemotherapy. In fact, doctors wouldn't even treat dad unless he accepted the transfusions, they said there was no alternative and as a result 35 doctors at MD Anderson refused to take him as a patient.

Needless to say, dad put up a fight! He was so strong willed that even up until the hour before we called the ambulance he got out of bed and walked on his own to use the restroom. And he did, successfully, without even a hint of passing out. Despite the fact that he had been in and out of awareness over the last 24 hours, he was talking the whole time. Jay and him had a little ritual "Walk and talk, walk and talk." And dad would chant it along as he used all if his energies every time he got up to use the restroom. The amazing thing this time, was that dad actually held a conversation, and for one last time his humor came out saying that he needed ex-lax and too bad he didn't have an ex-lax button. I'm sure this was just another invention in his head, being that dad was always inventing things. (Before back up sensors were even available on vehicles, dad rigged one up on the back of his little white Toyota truck, so he wouldn't run over me or my bike. And that was just one if the many inventions he came up with.)

The angels were with him during his last hours. He regained consciousness and told us that he was ready for the hospital. He gave us directions, "Call the liaison committee, wait a couple hours and then call the ambulance." Clear as day, with the same emphasis and hand gestures that he always spoke with. He asked for all of us to be in the room. And after following his instructions we called 911. Dad was aware of everything as we reassured him that he would be alright and walked him through what was going on. He could always hear us, even when he couldn't respond and his hearing and vision worsened. Through it all he maintained his sense of humor and earned the name Goldie Locks or G Locks. Words can't describe this anguish and gut wrenching feeling. So intense it makes you want to vomit. So unfair you can't help but to wish it was someone else. So angry because we did all that we could do and still nothing worked. So lost because dad is the glue that kept everyone together. He's the mediator, the eye of the storm, the voice of reason, the first one to spaz and yet always the first to say sorry in an argument.

I always admired the way my parents argued, voicing their opinion one minute, and then hugging and kissing the next. He is such a loving husband, a wonderful father, an understanding brother, an admirable son, a calm and wonderful teacher, a great best friend, a kind boss, an extremely hard worker, and such a faithful servant of Jehovah. To say that he will be missed is an understatement. He will be mourned, pined after, admired, and always remembered by our family, friends and coworkers. It sounds so cliche to say he touched so many people's lives and hearts, but I can positively say that those who knew him only have good memories of dad, as he was always compassionate, understanding, unbiased and unlimited in love. He is written down in the book of life and soon Jehovah "will call." And dad "will answer." "Then we'll come to see all that life can be: Paradise eternally."

9/11/12 A.M.L

So far it's been a long and painful battle. Dad's at the point where his energy is fading as well as his comprehension. His responses are vague almost like he's sleep walking. We finally got him hooked up to an I.V. today for fluids and to prevent any dehydration, which is kind of ironic since the nurse we saw today told us that based on his blood test he's been dehydrated for weeks and that this should have been a given for his treatment long ago. Thanks a lot Mr. M.D. At M.D. Anderson. It's one thing to just not agree with us for opting out of going through with the "standard" treatment of chemotherapy due to our conscientious choice to refuse blood transfusions, but to just throw your hands up and fail to offer any kind of suggestion for alternative treatment because we don't want dad to just be another number, is just appalling. Yes, we refuse blood transfusions. No, that doesn't mean we don't want the best health care out there, nor does that mean we don't accept other alternative whole blood fractions like erythropoietin to boost the blood count, or any other method of treatment that could possibly work. So much for being the greatest cancer hospital in the world. So much for all that non profit research, they're just big phonies constantly searching for "alternative" cancer treatments that they will never find, it's always just 50 years away. It brings tears to my eyes to think science has the ability to create an environment that can allow Felix Baumgartner to successfully jump and land a 24 mile high free fall, without ever spontaneously combusting, or breaking a bone, or turn into a human centrifuge. He didn't even need a minute after landing to compose himself or get his bearings. All in the name of science and yet the closest thing we've come to for cancer treatment is chemotherapy and radiation, a method of treatment they stumbled upon when it's original purpose (mustard gas) was for chemical warfare during World War I. We are at the time in history when we are begging for God to finally take just action and relieve us from the miseries of this horrid world.

Friday, October 5, 2012

Restless Nights

So I can't sleep. Completely unmotivated to write, but sooo restless. I even tried to wake up my husband for a small eency weency bit of understanding, support, consolation. Didn't happen. Instead I got a couple of grunts, a kissing teeth sound and then the obvious utter "why did you do that? I'm sleeping." No...really? As if I didn't give it any thought before I decided to wake you. I guess that sweet form of consolation and consideration just slips through the cracks over time. Oh to be date mates again. How is it that some couples fall more and more in love with their spouses, while others undoubtedly grow in their love and yet, excel in irritation? Remember when the little things used to cause so much upset? I remember expressing my dismay over squeezed toothpaste, most of you know exactly what I'm talking about, but for those of you who don't let me elaborate. The squeezed tooth paste that just oozes out the top because the faulty user forgot to read the little disclaimers notice that said to push toothpaste from the bottom up. In not talking about a full tube of toothpaste because squeezing from the center wouldn't matter, rather its the almost finished tube that has had the life and jelly-oozed life squeezed out of it from the center, has accumulated residue on the top, to the point that the little flap no longer closes. Shortly followed by the second little annoying quirk, "We need more toothpaste." What?! Irritation setting in as you discover that it's not more toothpaste we need but rather Siri to tell us the "to do" on how to use our tooth paste tube, or for that matter maybe they should just feature a commercial on t.v during the football game, or broadcast it on a podcast or sports news. Needless to say once you discover this "empty" tube and make the proper adjustments you can minimally get another week or two out of it. Must be the delirious frugal girl in me talking. Remember the late nights on the phone even though you both had to be at work early the next morning, the countless love letters and phone calls during the day. Married life works over a couple reality checks. Turns into plenty of late nights...talking to the t.v. news or yelling at the refs in the 100th game of the season. Oh and let's not forget the countless letters... From financial institutions reminding you when your bills are due. Then there's the "Why do I have to call you all day, you know I have to work?" It's so ironic, all those untouchable love movies that make love so idealistic. Which brings us back to the main point that I still can't sleep, while significant other has now etched himself to the edge of the bed so I won't bother him with my tossing and turning and is peacefully snoring away. I swear to you tomorrow he will tell me he didn't get to sleep at all! Oh what a pity! I could have been in a peaceful slumber too, if only I would have gotten just a little bit of understanding and a brief convo. I probably would have fell fast asleep. Instead, here I am writing about idiosyncrasies and listening to an obnoxious pipe banging every five minutes or so, beside our bedroom window (not sure from what). Also not sure what causes our baby monitor to make a deathly unclear white noise every now and then, that makes you literally want to jump up from bed and run for cover. Maybe I can find some music to my ears from these delicate repetitious noises that just might help me to sleep. Inhale, exhale, snore, pipe bang, radio static... inhale, exhale, snore, pipe bang, baby whimper, radio static... Then again, maybe not.

Thursday, May 26, 2011

Its Not That Big of a Deal

So there we were only hours into enjoying our gorgeous baby wondering why it had taken so long for the nurses to bring back.  Kyle and I were snuggling with our baby in the hospital bed staring in awe at this little human being that made up half of each of us.  Could there be a better feeling?

The nurse came in with the pediatrician, looking to speak with us in what we thought was just a routine visit... They began speaking to us like we knew what they were talking about it, like we saw what they all had seen and known. "We're pretty sure Matthew has Ds."  I remember thinking in my head DS?  What is that?  They continued going on with their conversation as if what they were saying was routine and ordinary.  We asked them why they thought that and they pointed out "typical characteristics",  (that I guess to them were obvious but to us it was just moms ears, toes and really long tongue) and then they said those dreaded words, "Its really not that big of a deal.  Many people with down syndrome (my question was answered) go on to live happy enriched lives.  Some have become actors like that one actor in that very popular show (they couldnt even remember his name)."  Kyle then looked at them and said "So youre saying that he might have down syndrome (the words lingered on our tongues)..."  Then the pediatric nurse said "No I'm telling you that he does. I hope I'm wrong but I'm 99.9% sure that he has it (what exactly is it?)."  And just like that she asked if we have any more questions (Questions?!  We barely knew what it was, how could we know what questions to ask?) and then she turned around and left. The blank stare in disbelief and unsurety never really left our face, we just looked at each other, looked at Matthew who was perfectly wrapped and snuggled in my arms throughout the whole conversation, and didn't mention it for the rest of the evening.  All we really knew at this point was that Matthew was healthy, he would sleep with us that night, he was beautiful...what more could any new parents want?  And at this point, nothing could take me off this natural high. Wednesday rolled around, Kyle researched what he could in the short time frame and we were convinced that Matthew didn't have anything.   We told my mom and aunt, they both just kept re-assuring us that he was fine. He was perfect, just beautiful.

We headed home that Thursday afternoon, and arrived to a beautiful display of our yard filled with a life-size stork and a ton of pink flamingos... they should really make blue flamingos for boys but, oh well, it was memorable.  We put Matthew in the living room with our guests and I went to freshen up.  I turned the corner and saw Kyle standing in the kitchen and just fell into his arms crying.  Looking back I'm not sure why I cried so hard, perhaps just afraid of what it all would really mean.  The pity party was short as I had a newborn baby to love and care for.

We went to Madds new pedi. Dr B on Friday where we got the perfect reminder that we just needed to go home and love him and care for him, afterall, he was just a baby.  Kyle and I were both moved to tears as we asked the Dr what his thoughts were as we recalled the pain of the disconnected way the hospital Dr gave us Madds difinitive dx.  His response was calming as he told us there was no way to tell unless we were to get a blood test, in which the results would take two weeks. We opted to go ahead with the testing.  Those next weeks I spent all my time researching and reading medical sites, blogs, community discussions.  Anything I could get my eyes on, I read it.  As much as I wanted to believe what everyone kept saying "He's fine." "There's nothing wrong with him."  "The doctors are crazy." I knew in my heart that he was fine, that there wasn't anything wrong with him, and though I wanted to believe that these Drs really were crazy, I didn't need a test to tell me that he did in fact have an extra gene, as his mother I just knew.  Sure enough as the weeks passed,  I cried again in hearing the definitive news, there was no longer any guessing or wondering, it was, what it was.  I wanted to talk about it till I was blue in the face, thats just how I am, I live in truth and thats just how I cope.  Kyle felt there was nothing to talk about, so we didn't. 

And that was the end of that... looking back the words "its not that big of a deal" really made me cringe, and though at the moment I hated the lackadaisical way the dx rolled of the hospital pediatricians tongue, she was right, its really not a big deal at all.  What does it all really mean anyway, and who is anyone to tell me what my son is or isn't? 

Matthew is ours and I'll tell you what he is.  He is beautiful with the most gorgeous gray eyes, he is smart, he is in love with me and his da-da, he loves music, he's funny, energetic, strong, cuddly and absolutely the most loving little boy you'll ever meet.  He is da-das perfect son and ma-mas perfect precious little baby boy.   He is the greatest blessing we could have ever asked for.  

Wednesday, May 18, 2011

All About the Labor

November 1 2010 at approximately 6 am is when I felt my first contraction.  It was stimulating somewhat bothersome but easy to deal with and after awaking Kyle to rub my back we were both able to get back to sleep.  Little did we know this would be the beginning of an intensely long 32 hour labor. We decided it would be best for Kyle to go to work and that I would let him know once the labor progressed. By about 4:30 in the afternoon we decided to head to the hospital after the contractions were fluctuating between10 minutes apart.  We called Kyle and told him to meet us at the hospital after he went to Walmart to pick up some snacks. Once my mom, aunt liea, Sariah and I arrived, we were disappointed to find that I was only 1 cm dilated. We all headed back home not quite knowing when this little guy was going to come.  My contractions were never consistant enough like the nurses claimed they should be, ex. every 5 min for an hour or so. 

We spent the next 11 hours enduring contractions.  It was thundering and pouring that night and we were on severe thunderstorm watch which made us all kind of nervous.  Mom started to plan different routes to the hospital... needless to say this was not comforting.  We asked if everyone would leave so Kyle and I could get some rest. We decided to try to sleep through the contractions in between Kyle would use counter pressure to help with the pain.  It was about 3am when I got up to use the restroom and as I was sitting on the throne nuzzling my head into Kyles stomach as he rubbed my back through a contraction, I felt something drop into the toilet I got up nervous that my water had broken just to find that I had lost my mucus plug.  I however was unaware of what this could be and was concerned that it was actually my water that had broken, and after having my mom and Liea look to see if they could recognize it we decided that it would be safe to head to the hospital.  At this point the contractions were still 8 minutes apart and sometimes even back to 10 or 15.  This concerned me cause I was unsure at how far along I was in my labor and because of my desire to go with an all natural childbirth I had previously decided to hold off going to the hospital as long as possible, to prevent any interventions that I knew would eventually occur.  I knew once I was in the hospital it mattered not what I had previously discussed with my OB doctor.  However we chose to go to the hospital to err on the side of caution.

When we arrived we encountered some rude nurses who would not allow anyone to stay with me while I was being checked, so I was left alone in triage with the most annoying jazz music and some rediculous pic of the forest lit up on the ceiling.  They made me lay on my back which I knew was not good for me or my baby during this process.  However the nurse insisted this position was the best way to be.  I felt completely powerless and at that moment vowed at the time around I would not be in a hospital.  They hooked me up to fetal monitors and checked my blood pressure, at this point I felt my contractions had laid off and were even more irregular, thankfully Baby and I were doing fine, Matthew was barely even phased during contractions.  Once they did the final check they determined I was 7cm dilated and was admitted about 5:30am November 2.  Finally Kyle was allowed to come back into the room with me and we headed to the labor and delivery room.

We all settled in and thankfully were able to get an extremely supportive nurse which made the next 9.5-10 hours far much easier.  Unfortunately the nurses did not follow my wishes of being able to have an active and free to move about labor and instead had me hooked up to the bloodpressure and fetal monitors as well as an IV saying that I was dehydrated... how they knew I'm not quite sure but I spent the next 4 hours lying bed like an invalid, I was only allowed to get up when I needed to use the restroom which allowed me to have the blood pressure cuff removed and the fetal monitors off, I dont think it takes a genius to figure out that this is where I spent most of my time. Kyle, mom, Liea and Sariah spent some time taking turns to rest and about 4 hours later my Dr arrived to check my progress.  Much to all of our disappoinmtment I had not made any progress and Dr Stephanou thought it would be best to break my water.  I listened to him explain the process which I was all too familiar with, once they broke my water if the contractions didnt get stronger they would give my pitocin and then if my labor was at a stand still they would eventually resort to a cesarean in order to "preserve" our energy.  I expressed my wishes very clearly, knowing that I was just in the Natural Alignment Plateau and told him I wanted things to happen naturally and that me lying in bed was not what we had originally discussed.   I asked if he would allow me to get up from the bed and walk around to help the process move faster, disappointed and annoyed he finally agreed and said I had 4 hours or he would break my water.  Thankfully I was finally going to be able to have the labor I wanted.  I walked around the room, did squats, and sat on an exercise ball.   I had several nurses check my progress and found that bag was bulging and that I was at 8 cm.  The techniques were working! 

At one point a resident Dr decided to come in and check my progress and much to my disappointment "accidently" broke my water, as I was lying there I could feel the warmth in uterus and announced to him that he had broke my water, shortly after he realized and apologized saying he did not mean to, I told him that I hoped not cause I had a foot nearby, the doc was a little absent minded and thought I was referring to the baby being breech.  Thankfully Liea was there to explain the reference and I didnt see that doc for the rest of my stay at the hospital.  I cant recall ever moving from first stage labor to active first stage or even late first stage labor but I remember transition and the intensity of my contractions once my water had been broken. 

For the next hour to hour in a half I needed two people at my side and the pain almost rarely subsided.  The most agonizing part of the labor was when one of nurses claimed the baby was sunny side up  and adamantly insisted that I lay in the running mans position for what seemed like an eternity.  The only thing thast kept me focused was knowing that I was doing this for Matthew and that the end was in sight as I now felt the contractions in the lowest part of my back, and as they kept coming my desire to push kept getting stronger and stronger.  It got to the point where the pain was intense and the only relief was to push.  The nurse prepped me for delivery and then shortly after Dr. Stephanou came into the room ready to delivery my baby.  It took about 3 good pushes holding for 3 counts of 10 seconds each.  During one push I mustered up the strength to look into the mirror to see my babys hair, amazed that he even had hair cause throughout the entire pregnancy I never had heartburn.  The Dr said I would be pushing for several more hours or he could give me an episiotimy and with the next push my little guy would be in this world.  I opted for the episiotomy and with the last 10 second hold my little one was on my tummy at 2:56pm.  My beautiful baby was singing the typical newborn intro until I spoke to him and as I watched his little head slowly turn to look at me and watched an utter calm came over him, it was the most beautiful feeling a woman could ever imagine.

My first words were "My baby!  Hes beautiful babe!  He looks chinese!  Are you my baby?" The doctor waited for his cord to stop pulsating and then Kyle cut the cord and I was able to hold my baby in my arms.  I kissed him and never wanted to let him go.  They moved him to the incubator where he held on to daddys finger as tight as he could.  I laid on the table as the Dr stiched up the incision.  We accomplished our goal and little Madd was safe in our arms.  The next day Dr S came into the room to check in on us and apologized for pushing me to have my water broken.  He explained that when labors stop hes used to speeding them up.  He expressed his amazement and by the second day was calling me the "queen of labor."  And while I aquired this glorious new nickname... the only thing that mattered most in this world is that our precious little baby was finally where he belonged.

Tuesday, March 22, 2011


Thought it would be nice to share some photos before our dear little MadD was born...

The Engagment

The Wedding

Surprise Pregnancy




Celebrating Our 2nd Year Anniversary

Baby Shower at  32wks3d


Celebrating Aunt D and Uncle K's 35th



Matthew On His Way at 38wks5d
Flowers Daddy Brought for Mama at the Hospital
 He's HERE!

 1day old
 2 Days Old

Thursday, February 24, 2011

Many A Little Makes a Mickle

Its been 4 months already since the birth of our son and I thought it was about time to start journeling this little ones small steps leading to big things. 

Matthew Alexander Dean, precious little Madd, is the most beautiful little boy anyone could have ever asked for.  Officially 16 wks and 2 days he is already a handful.  Our little one has lots to say and many places to go.  He babbles on for minutes and expresses his irritation when mama takes a minute to do her workout instead of devoting her exclusive devotion to doting over this precious little boy.  Then goes on and on telling, after awakening, on his Auntie Ria who endured watching him during the moment of fussiness, she is in fact the only other one besides Mama and G-Pa who can get Madd to sleep.

He's been attempting to army crawl or as hubby says "crawling under the barbwire" since he was days old.  Still attempting he can move some inches but lets face it, he HATES tummy time and persists fighting with it until he is too tired to take anymore.  But thats Madd our "Little Fighter".  Already wanting to sit up like a big boy, and mama is having to pull on the reigns. "Matthew you can't sit up til you have better head control!"  My antics, however, do not stop him as he squirms and fusses when we lay him at a 45degree angle, so much so that the other day while loungeing on his boppy he was so infuriated that he clenched his fists to his body and with great grunts lunged himself forward and up, much to the familys surprise!  What a little goober!  

And yet, these are only the beggining of many writings, brags and pictures....