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!