So worth the wait...

Today's the day that has made all that we have gone through these last three years SO worth it!  

There I was sitting across from the special education director in our school district.  She shuffled papers and was extremely unprepared for our meeting.  I was, for the first time, the later, I had been waiting for today for years!  She read her notes and the specialists spoke one at a time, first Speech, then Occupational Therapy, then Physical Therapy.  They all spoke at what a joy having him in their testing room was and how much more advanced he was than the other students around his age.  They spoke about how well he interacted with another little boy who was also being tested the same day.  They spoke about how hard our struggle must have been and how strong Gary and I were are parents.  It was moving and for the first time since that dreaded day in the 30th week of my pregnancy, when I was scared beyond measure and I thought of nothing more than the "what if's"...I knew that our family is exactly where we are suppose to be.  It makes my heart SO happy to see our little boys body finally grow.  He is almost out of 2T clothes.  YAY!  He is thriving developmentally, emotionally and physically and we couldn't be more proud of how far he has come.   

    

Christmas in July.

Well the day has finally arrived.  I cant believe that it has been two months since our last visit to the cardiologist.  What a challenging two months we have had.  Tucker continues to be on several doses of diuretics daily.  He still takes Aldactone and double dose of Lasix daily.  We signed into the cardiology clinic and updated our paperwork and Medication sheet and I saw his "Past Procedures" and a wave of sadness came over me.  It is sometimes surreal how far we (and I) have come these last three years.  Next month it will be three years that I have heard the words "Congenital Heart Defect", "Tricuspid Atresia with a Ventricular Septal Defect" or "Palliative heart surgeries".   It's crazy how we have been thrown into this world of CHD's and how much we have had to learn these past few years about Tucker's special heart.                      

Currently, Tucker's oxygen sats are hovering around 95.  This could be happening for two reason's. (They shouldn't be this high)  They should be in the 80's if they are still using the fenestration (4mm hole) that they made during his Fontan in March.  His heart could simply not need the fenestration and could be functioning properly on his own. (ideal situation)  OR it could have closed on its own.  With that being said, the reason is not important, his EKG in clinic looked great.  So we will have to wait to see about the fenestration at his next catheterization.

Dr. Porras showed us Tucker's updated Growth chart.  I am proud to report that Tucker is now hovering at 21% in weight and 7% in height.  We will take it!  He had gained 1.5lbs in two months.  Although I swear that the weight increase is due to our recent discovery of Tucker's new favorite treat.. Chocolate Almond Milk. Since he has a whey protein allergy, it has been hard to get him to eat many non milk things.  He has no desire to want to chew many things, he would drink it all if we would let him.  We will be scheduling another allergy testing for sometime this fall.  Fingers crossed.  Until then....The news that we have been waiting to hear for months... 

Dr. Porras:  "We will see you in 6 months!" 

That's right...No clinic appointment until after Martin Luther King D in January!

Merry Christmas to us! 

The entire family went out tonight to celebrate.  We went to the Lego store and got both of the boys toys, we went to PF Chang's for dinner, and got them candy for dessert.  It was an amazing night had by all. 

Thank you everyone for your continued prayers for our family. We couldn't be happier and feel more loved.   

Spencer has been doing great this summer, we continue to go to the library and practice reading with him.  He has been very busy with camps this summer.  He just finished an outdoor camp last week and is in Church camp this week.  He is learning a lot and can even identify 20 different birds and insects now.  Mommy promised him that he could get a Mohawk at the end of school, he is LOVING all of the attention and "hi-fives" that he is getting with his new spiked hair.    He also just lost his two front teeth, pictures to come...

Mommy and Daddy have been working a lot on the house.  We just completed the side yard by adding three large garden beds and a large tiered herb garden to our property.  We repainted our existing fence and it looks like a new property.  Our garden is thriving and growing a bunch of yummy items like carrots, beets, spinach, romaine, snap peas, eggplant, zucchini, yellow squash, green beans, cucumbers, strawberries, blueberries and 4 types of tomatoes.  We are teaching the boys how to weed and take care of the plants.  They love going outside and picking their own items for dinner or snacks.  Since the side yard is done, we are making the five plans for the "new backyard".  This will take a lot longer to plan.  As I am determined to place a pool in the backyard in lieu of our existing 50 foot deck over looking the river.  A pool would be perfect for Tucker to be able to cool off on hot summer days.  Hopefully the demolition starts next year.   

Video of Tuckers cardiologist Dr. Diego Porras
https://www.youtube.com/watch?v=0pFSWpvCQWs&index=2&list=FLlRDSu-TIbfgpq05d2v-Rjg

I Hate CHD's!

I sit here sobbing...as this is the most difficult entry that I have ever had to write. 




On Friday June 20th at 3pm, I received a phone call that would break me.  Our heart friend Stephanie Williams passed away with her family by her side at Milford Hospital.  I am so heart broken at her loss.  Although our family had not know Stephanie very long, she was one of most valued friends within my contact list.  She was Tucker's biggest fan, and helped me through so very many dark "CHD" days  She had a million heart stories in her 29 short years and I wanted to hear them all. 







I met Stephanie through a close friend right around the time that Tucker was born.  She use to babysit for her and I was curious to hear her CHD story.  Our family invited her over for dinner several times, and always communicated through texts and/or Facebook.  Stephanie was an amazing person, she played with my children like they were her own and told us her story several times.  I always asked a bunch of questions, most of my questions were directed to her about her mother and her childhood.  I was often taken aback by the fact that her mom treated Stephanie like she was a "healthy" child.  Stephanie did all sorts of things when she was growing up, she would tell me that her mother would just make sure that she was always with her. 




While we were in patient at Children's Hospital, Stephanie was at Brigham &Woman's Hospital for what she thought was a viral infection.  Sadly her "new" transplanted (8 years old) heart was in rejection.  The worst part was yet to come, as she would not find out for several weeks that she was unable to be relisted for a second heart transplant.  Stephanie and I sat for several hours just catching up about life with the boys and her new nanny position working for an adorable family where the father was a cardiologist at the very hospital that she was inpatient in.  She was worried that she would be fired...I told her that he could check her alibi and not to worry about it.  Little did I know that this would be our last conversation.  Such small talk, but she loved it!  Anything that took her mind off of being in the hospital bed.  I walked with her to the cath lab for what she swore was her 1,000 cath, and as the doors parted, I surried back to Tucker's bedside at Children's Hospital. 




Although Stephanie  was born with a broken heart, she had so much love in it.  She loved life and never took one day for granted.  When I am able to talk to Tucker about Stephanie, I will certainly beam with pride that she had a wonderful life.  She lived life on her terms and lived it to the fullest.  She would not want us to be sad about her passing.  She would want me to tell Tucker all about her story and how strong and brave she was. 




I mourn so many things about Stephanie's passing.  Death makes you put your own (and more importantly, your CHD son's) life into perspective.  There are a lot of "what if's" that can be asked.  I try to keep these feelings suppressed, but sometimes I just can't and my emotions get the best of me and all I do is sob.  I am not sure if I am sobbing for the loss of Stephanie or that I have lost all hope of Tucker outliving us.  I HATE CHD"S!

It's My Heart CHD Awareness Walk and Our Family's CHD Video

Please help us find a cure for CHD's or consider walking with Tucker's Troops on June 29th, 2014 in the It's My Heart's 4th Annual CHD Awareness Walk. 


After weeks of compiling photos and music for our family's CHD video, I am proud to report that our vision is now complete. 


Enjoy.


Tucker's CHD Video on Youtube


Tucker's CHD Video on Vimeo

2 month post op appointment and The Heart Walk

Tucker had his two month post op follow up on Tuesday at the cardiology clinic at Childrens Hospital in Boston.  It went well.  Tucker was quite the challenge during his vitals.  Joe was so patient with him during all of it. Tucker also told me during our wait in the clinic that he had to go poop.  We hurried into the bathroom and sat on the toilet for a minute then he hopped down while screaming that he no liked it.  Within minutes he had gone poop in his diaper, just when they called his name for his vitals.  UGH...Potty training is so difficult. 

Then Dr Porras came in with a medical student from Harvard.  I believe that her name was Dr Gellis.  She was sweet, but she couldn't have been more patient.  Tucker wanted to have nothing to do with either of them.  He screamed the entire time, saying "No touching me" and "NO like".  In a nutshell, Tucker needs more time to recover.  He is still on double doses of diuretics with no end in sight.  He thinks that we will have to be on them quite some time as he is still retaining a lot of fluid.  He wanted another follow up appointment in 2 months to check on his status of fluid. 

On a lighter note, Gary and I have been filling these last few weeks with baseball and cub scouts activities.  Spencer got to go to the Clinton Firestation this week.  What an excting time for our boys.    Spencer got himself dressed all by himself for the occasion. 

Back at home our daily schedule looks a little like this, eat, then have a meltdown, repeat...

One big plus to his OHS is that now he can sit and eat a meal without getting winded.  Since he is allergic to milk it has been a real chore to get him to et anything but peanut butter.  We have started to be able to find items like breads and muffins without any milk that he is able to eat. WINNING!

Mommy is going to an adult CHD seminar tonight that she has been excited about for a few days.  I am so proud of all of the work that I continue to do within the CHD community.  The Heart family's that I have met because of Tucker's diagnosis have been so inspiring.  Please join us with Tucker's Troops for the annual Its My Heart CHD Walk.  Its a wonderful day full of fun for the entire family.   

Electronic devices disconnect.

Mommy has been SO busy.  She has been staying away from all social networking sites and sadly this blog.  Nothing is wrong, just making sure that we are living in the moment.  Kids grow up so fast and we don't want to miss anything.  

Mommy is also on track to go back to school in September.  It seems that everything is just a little harder these days.  So after jumping through many hoops, she has been accepted into the medical studies program at a local community college.  Its a start to many new things to come.

Thursday April 3rd, Aunt Nancy, John and I attended the PFLAG Awards at the WTC in Boston.  What an honor for John, he was one of 60 students chosen to receive a scholarship to college for his work on the Matthew Shepard Project.  He cast, directed and ran the entire production.  He even donated all of the funds from the show to a local non profit group.  A member from the PFLAG board of directors, mentioned that he was one of the only students whom everyone voted for unanimously.  I am so proud of him, I swear that he is going to change the world.  

Friday April 4th, Tucker had his cardiology follow up at children's hospital in Boston.  Dr Porras couldn't have been happier at his X-rays and his lab work.  Everything looks great!  Dr Porras said that he wants to see us in 1 month.  During that month he will be on a family vacation in Guatemala.  So he told Tucker to behave himself!  Fingers crossed.  

Lollie came over for a visit after work.  

Mommy got to go out for a night out in Boston to celebrate Gary's cousin Julie's bachelorette party.  It was a great night full of many laughs.  While we had dinner at PF Chang's a little boy came over and asked if she was a princess.  It was so sweet.  He even stopped to say goodbye to us as well.  

Tucker also continues his weekly therapy appointments for speech, PT and OT.  He is making progress rather slowly, but he is continuing to move in the right direction.  

This was the first weekend that we felt safe enough to venture out of the house for fun activities. We attended an Easter egg hunt in NH for our heart group, two birthday parties, went out for breakfast and attended Spencer's baseball activities all weekend. 

I think that it was to much too soon.  

Tucker ended up with the stomach bug on Monday, which prompted several calls to Children's hospital regarding Tuckers multiple diuretics.  Mommy spoke to Katie our discharging NP and she checked with Dr Freeman, who was covering Dr Porras while he was on vacation.  Discontinue his morning Lasix and Alnodactone.   We finally got freeze pops and crackers into him and prayed that they wouldn't have to readmitted him for fluid retention.  After his afternoon nap he woke up a healthy child.  We are hoping that it was just a 12 hour bug.  

She can be taught!

Our wonderful VNA RN Bonnie came out today for a visit.  She was running a bit late so she stayed and had her lunch with her favorite patient.  Bonnie had a wonderful ham and cheddar grilled panini on sourdough, Tucker had a milk free cupcake.  Which is currently, the only thing that we can get him to eat.  

After school, Spencer, had a routine appointment with the pediatrician.  Spencer was so brave, while Tucker screamed "all done" the entire visit.  

Since the thermometer finally broke 55, we stopped at Central Park so that the boys could get some fresh air. They had a blast!  Tucker again screamed when we left, " outsidddeeee!!!"  And then again between our car and the front door.  Ugh!

One of the suggestions on how to practice spelling words is writing them in foam.  This is brilliant!  (FYI-my dad works for Gillette) 

Lastly, I wanted to thank everyone who reads this blog.  Your continued support of our family and your positive feedback regarding my writing has pushed me when times have been difficult.  Writing daily has become a struggle over the last week.  Several months ago I got laid off from my employer. Although it was scary to transition to a single paycheck house, we have lost something way more important, our wonderful medical insurance.  Tucker has a supplement, however the rest of us do not.  Our family out of pocket max is simply ridiculous.  So as I am grateful that we had such wonderful medical insurance, I wish that we were able to continue it.  With that said, I have come to a decision that I will never be in the situation that I am now.  Out of work with only a high school diploma on my résumé.  Therefore,  

I am going back to school.  These last few days I have been studying and taking the Accuplacer test.  It tests your basic knowledge of Math and English up to 12th grade.   Having not been in a classroom for over 20 years, I knew that I would test terribly in math.  And I did, TERRIBLE!!!  However, in English I surprisingly excelled.  Well, that might not be the complete truth.  The test is gradual, the more that you answer correctly, the further you get to go.  So Tuesday, I was prompted to complete the essay portion.  A 300-600 word essay on the most boring topic.  Wednesday, I went back for my grade, a 5.  Which means that I would have to retake a high school English class.  

My response: "What, that cant be right?" Proctor: "I hear that a lot. How many words was it?"

Me:"363"

Proctor: "I bet that it wasn't long enough"

Me:  "then you should change the requirements to make the essays longer."

Protor:"you can take it three times, do you want to take it again, you might get a better topic to write about?"

Me:"yes, please!" 

My question, "Can deception be good and bad at the same time?"

I wrote my heart out, sighting examples, research data and interview findings.  (All from made up characters, a teen named Spencer who drove his parents car over the lawn and hit a neighbors mailbox.  A couple, Tucker and Isabella Johansen, were also in the study.)   I signaled to the proctor, he printed my grade, as the assistant pulled the page off the printer I heard, "well, I'll be..unbelievable!"  "I have never even seen anyone get an 8!"  The male proctor, "an 8?!  Well, you deserve a special pat on the back, I have only seen a handful of these in my 13 years working here, congratulations!"  "Now take that home and hang it on your fridge!"  Still in shock,  and now feeling the rest of the class peering at me, "this is like getting 100, right?"  Male proctor, "yes it is, which is remarkable, because there is no spell check, so your spelling and punctuation were perfect.  I mean, who doesn't even miss a comma in a 600 word essay?"   "Well, you don't!"    

I could be seen for hours grinning ear to ear!  So happy (and proud) that I have decided to take the road less traveled which is scary and so much more challenging.  ;o)

Mommy's angry today!

Someone said this to me yesterday..." I'm so glad that Tucker's out of the woods now."  WHAT!?!  Now if you know me, it took all of the strength that I had to not punch her in the throat.  "Out of the woods?"  Let me tell you lady, you have no idea how hard this has been being thrown into the forrest of CHD's with no flashlight!  Did I say that, no, but did I ever want to.   I just smiled and grinned and actually bit on my tongue in my mouth.  What I wanted to say was this. I wish that there was something just one little thing that would make me feel better about saying the following but here isn't!  CHD children die!  They die all the time.  You can be , so called, out of the woods, and you can have completed all of your palliative step surgeries and then you can get a fever, a stomach bug or an infection and it becomes fatal.  Yes, his heart has been corrected, but it will never be "fixed"!  

Being a heart parent is one of the toughest things in the world, you get looked at like a lunatic for being a "germ a phobe" as one virus could take your child from this earth.  You check everyday and night while your child is sleeping to make sure that they are still breathing.  You scream at insurance companies to get them to pay for medications that are not normally covered because without them your child will be hospitalized.  So when you tell me that our son is out of the woods he most certainly is not!  Tucker will never play contact sports and he will never have a normal heart beat.  The next medical step in this process, should his fontan fail, is a heart transplant.  Those are simply the facts!  I have attached more CHD facts below.  

Incidence, Morbidity & Mortality

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birthdefect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• There are an estimated 2,000,000 CHD survivors in the United States.
• For the first time, more than 50% of the CHD survivors are adults.
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects.
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.

I am glad that I said my peace with that..Now to address Tuckers current state.  

Tucker is currently still on two diuretics and hasn't coughed since we were inpatient at children's.  This morning he woke up and coughed a few times, so his VNA RN Bonnie will be out to see him at 11am.  

Tucker developmentally has taken a huge step backwards.  On March 11th we dropped off a very articulate 2 1/2 year old who was putting together 5 word sentences.  What we now have is a child who has digressed back to two words at a time and many words have been replaced with grunts and high pitched screeches.  We have ramped up his early intervention services in hopes that he will not regress further.  His physical set backs have been the usual, lethargic and the inability to sit himself up from lying down.  That will come in time when his incision heals.  

Tucker was eating beautifully prior to surgery, he was eating meats, veggies and fruits like a champ.  Tucker now wants nothing to do with any protein, meat or eggs are almost completely out of his daily diet.  He snacks quite frequently on Teddy Graham's or crackers.  Since he is also allergic to whey, any dairy is out of the question. He has lost three pounds since surgery and we are struggling to put it back on him.  This will always continue to be a challenge. 

Day 20 Snuggle Sunday

A rainy Sunday=snuggle Sunday.  Which just so happens to be the perfect day to stay in your pjs all day and watch TV.  So that's what the entire family did!  We played UNO, made cupcakes and watched countless hours of Tuckers favorite show, Dora The Explorer.  We topped the day off with a RN visit just to make sure that his lungs sounded nice and clear.  Which is such a relief to mommy and daddy since fluid can accumulate overnight. 

Day 19 Home...round 2.

We had a very special day today!  

This morning I went to my very first Bris.  (I was lucky to be situated in the hallway for most of it.)  It was a day full of so many miracles.  The miracle of life, and the love that two babies can bring to a family.  The babies (twin boys) were born using a surrogate.  What an honor it was to be a part of this very special day.  

Prior to my departure some silly photos for Annamary.  

Spencer beat mommy in UNO tonight.  Not sure where he gets his competiveness from.  

Yay...Tucker's home!  

Although he is cranky and sleeps a lot lately, it was so great to see him play with Spencer again.  We had a little crazy mother episode at the Walgreens in Framingham.  If you have ever dealt with a compounding pharmacy you will completely understand what I mean.  It was insane.  Tucker was going to miss four doses of his diuretic before they would even be able to get our drug mixed so we may purchase it.  Completely unacceptable that a 24 hour pharmacy only mixes compounds overnight, after insurance approval which can't be obtained over the weekend.  Me: Umm...what?!?  My son was just discharged from the hospital an hour ago, he cant go without it all weekend, your the only compounding pharmacy in the area?  

Pharmacy tech: yes, what's your phone number, I can call you back when it dies down in here.  Or it would be better if you called the overnight pharmacist, she'll be in at 10 pm.  

Me: are you serious?

Pharmacy tech: what's your number, I will call you back?

Now that's some great customer service at its finest!

I am so great full for the phone number that connects you directly to the cardiac floor at Children's.  Thankfully we know the NP that discharged us by name, I called Katie and told her our little problem. Within 10 minutes, she had called an oral med in that we can half and crush and we can give it to him that way. Its only suppose to be 12.5 mg, due to his size and weight.  When halved and crushed it will be 15mg.  So she checked with the pharmacy, that will be ok as well.

The first sign that Summer is approaching..