Two Magnificent Years

Today we celebrated our second wedding anniversary.  We had a lovely evening with our sweet Stell Belle and just enjoyed family time.  We've experienced more this past year than many couples will endure in a lifetime.  Having each other to lean on has gotten us through.  We want to also give a shout out to Trey's buddy Ryan (a respiratory therapist at Fletcher Allen) and his wife Elizabeth who also celebrated their second wedding anniversary today.  While it may seem strange that we miss a hospital, Burlington was our home for six months - we miss the city, the hospital, and most of all the people.  Happy Anniversary Ryan - we hope you and Elizabeth had a quiet day at home for a change!

The Next Chapter

(Cole still isn't quiet sure what to think of Stella - this is 

the closest he's come to her in seven days!)

We began this blog when the twins were first born as a way to keep our loved ones informed.  The early arrival of the babies and the long, difficult road we knew was ahead of us was devastating, so the blog started at a time when we could barely speak to our parents and siblings. We had no idea that the site would attract so many followers, or that our NICU/PICU journey would be so long and exhausting, nor that it would end so sadly.  As we embark on this next chapter with our lovely little Stella and attempt to establish some new routines at home, we hope to continue sharing some special moments with those who want to keep following our family.  We plan to blog every Sunday as our routine, and may have an 'extra' post here and there for really exciting milestones and treasured tales. 

Thank you to all of our loyal friends and family - we couldn't have come this far without you.

Love,
The Todds

The Biopsy

With everything that has happened we haven't had the chance to share with everyone the results from Trey's biopsy.  Sadly, the final report really didn't explain much about why Trey was so sick.  His chronic lung disease was certainly not representative of a 30-weeker.  It is very rare for a premature baby of this gestational age to have the illness Trey had.

The CT Scan showed that the architecture of his lungs was extremely abnormal so the doctors anticipated finding a Children's Interstitial Lung Disease (chILD) through the biopsy.  The tissue showed nothing consistent with chILD, but the sample tested did confirm pulmonary hypertension (as we mentioned previously) accompanied by a severe case of chronic lung disease.  While primary cases of pulmonary hypertension are rare and have unexplained causes, Trey developed pulmonary hypertension because of his lung disease.  The lung specialist we worked with estimated that only about 20% of Trey's lungs were actually functioning, which caused his heart to work over-time.  This You-Tube video has a good explanation about pulmonary hypertension:   http://www.youtube.com/watch?v=U1jzkNdyt9Y&feature=related

While we may never fully understand what happened to our sweet Trey, we believe it was a true miracle we had five-long months with him.  He was a strong little fighter, and everyone's prayers helped extend his time with us.  Thank  you again to all of our supporters!

Car Seat Free Day

Stella has had a very active lifestyle since she was discharged from the NICU, but we are happy to say that today, she just stayed home.  She played @ her own house, with just her mom & dad, and didn't go in the car at all.  We thought this was worth blogging about!

Stella's transition home has gone relatively well.  Her big girl crib is different though - she has lots of room to move around.  Each morning we find her with her head at the opposite end of where it was when we put her to bed and her feet dangling out the end (Mom got scared and took out the bumpers/we'll be doing things by the book so to speak for a while).

She is still a happy girl most of the time which is good for us, we think she can brighten anyone's day!

Remembering Trey

Lawrence Funeral Home helped us honor and remember Trey with two very special days.  So many people have expressed their love and support for our family since this all began back in Decemeber, and that warmth continues to surround us.  We will be forever grateful.  We wanted to share a few pictures of Trey's calling hours and memorial service.  We will be getting more photos over the coming days and hope to share others soon.

In Remembrance of Trey

To honor and celebrate Trey's life we invite everyone to join us:

Wednesday, June 16 @ Lawrence Funeral Home Canton, NY

Calling Hours: 2-4 pm & 6-8 pm

Thursday, June 17 @ Fairview Cemetery Canton, NY

Graveside Service: 11 am

Directions From Plattsburgh, NY:

Follow Route 190 Military Turnpike to US 11.  Continue on US11 (approx. 75 miles) to Canton, NY. In Village of Canton turn left onto Park Street @ the Village Green (Movie Theater on Corner).  Lawrence Funeral Home (yellow) is on the left just passed the park.

http://lawrencefuneralhome.org

From Funeral Home to Cemetery:

Take a left out of the Funeral Home driveway onto Park Street.  Take third street on the right (Lincoln Street).  At four-way intersection turn left onto Miner Street.  Follow Miner Street passed St. Lawrence University Athletic Facilities and over Grasse River Bridge.  Fairview Cemetery is at the top of the hill on the right.  Turn right into Cemetary, take any road to the left to reach gravesite.

We LOVE You Trey

It is with great saddness that we write this entry.  Our beautiful Trey passed away early saturday evening.  His chronic lung disease/pulmonary hypertension finally caught up with him.  We are so proud of the fight he fought; his toughness and drive will always inspire us.  After day 2 when we thought he wouldn't make it, he allowed us to spend five months with him.  He surprised everyone with how long he fought and if we can take anything from this it's that he was an extremely strong little boy with a great spirit.

(This is how we will remember our angel, happy and healing, from February)

We know we are not the only ones grieving; he was loved by so many people that didn't even get to meet him.  Life seems to be extremely unfair, but we will always treasure the five months we had with Trey.  We could not have asked for a better last day with him.  Thanks to everyone who made that possible.

Arrangements are being made, and we will inform everyone when things are final, so we can all say goodbye.

Our Breaking Hearts

Our hearts continue to break as each day passes and Trey's health deteriorates.  It is as equally heart breaking to watch each other go through the pain of being with a really sick child with no explanation.  Stella continues to be the glue that holds all of us together.  We are so very grateful for her good health, for our family, and for all of the love and support everyone is showing us.

On another note, after five long months of being here, the parking garage attendant finally talked to us.  He was in a happy mood today and for the first time ever spoke to us - he asked us how we were!

Our Monkey In the Middle

Trey had a rough morning today and has been slow to recover.  PICU staff continues to do a great job of getting Trey out of trouble but he is requiring maximum amounts of support - the NO is back up, and he's needing 80-90% oxygen.  He continues to be sedated and the paralytic was brought back out.  The ventillator is trying to do its job while his lungs want to do another and poor little Trey is stuck in the middle with no control over what is happening.  The events of the morning are an indication that Trey has not responded to the steroid treatment. 

Since Trey's morning wasn't good daddy came to his side.  The doctors spoke to both of us today about preliminary findings from the lung biopsy.  While they are still waiting on a final report, they do know that Trey has category 4 pulmonary hypertension.  They tried another medication (milrinone) this morning which is intended for relaxing/opening the blood vessels in the heart, allowing the heart to deliver blood to and from the lungs with more ease.  Unfortnately it didn't seem to help and had to be stopped because it was causing Trey's blood pressure to drop. Today brought us great saddness as the treatment options we had such high hopes for are not having favorable results.

A Busy Day

Today we had a lot going on.  After spending the morning at the hospital with Trey we split up for the afternoon.  Randy took Stella to an eye specialist for her premature follow-up appt. (her eyes look good so far so she doesn't have to go back for another year) and I picked up Grandma and Grandpa Goolden from the airport.  They had a wonderful trip to visit Patti, Hank, Haley and Skye in Hawaii but all vacations come to an end.  We had a quick lunch in the late afternoon before Grandma and Grandpa headed back to NY, and then we met up with a videographer at the Ronald McDonald House to participate in a video shoot.  RMH is developing a video for volunteer and fundraising purposes.  Since our family has lived @ RMH for such a long time we were invited to be filmed.  Stella slept through her entire screen debut!  After spending a few more hours at the hospital with Trey Randy dropped Stella and I off at our room and he headed back to NY for the next three days.  Trey continued to have a steady day with no changes.  His steroid treatment has continued and we are hoping to see some positive results soon!

Home Cooking.

Another status quo day for Trey.  Nothing really changed today, everything was calm and chill.  One thing was different today; his steriod dose.  He is still on the same steriod that he has been on continuously for the past two months, but today started the trial of a higher dosage "pulse".  For three total days, Trey will be receiving 60 times the dosage he had been receiving.  This "pulse" is an attempt to see if Trey's lungs can show any sort of structural improvement.

Mom, Dad, and Stella were invited to Dr. Bob McAuley's house for dinner this evening.  After hearing that we eat out alot, Bob insisted that we join his family for a home cooked meal.  His family was very generous and dinner was wonderful.  We continue to be amazed about how many people in our lives can be so wonderful.  Old friends, new friends, and people we barely know continue to show us that they support our family; I do not know how we will ever be able to say thank you to each and everyone of you!

Lazy/Rainy Sunday...

Today the weather was miserable, but Trey didn't seem to mind.  He kept his sats high all day and his vent settings were able to be wheened ever so slightly.  Our son is a mystery and no one seems to be able to figure him out.  He just had surgery so everyone thought that he would be needing more meds and more support.  He said "I don't need that extra stuff, I'm tough."  So, it was a quiet day.  Trey was able to watch Tennis and then Golf with his Dad.  He seemed to enjoy the quiet time with his family!

Stella is doing great; she is a great baby.  She is starting to "talk" more, and loves to smile at anyone who comes to see her.  She is already a social butterfly, and the hospital staff loves to see her because she brightens up everyone's day!

A Roll of the Dice

Trey is resting comfortably and is recovering well from the biopsy.  Since a chest tube has been temporarily placed to deal with any potential post-biopsy problems great care is being taken for him to not move around a lot.  As a result Trey is staying in bed for a few days.  We are spending lots of time with him though - today we watched golf, started a running Yahtzee game, read 'The Lion King', changed lots of diapers, and let Stella tell Trey all about what's happening in her world (she was such a chatterbox this afternoon!).  We hate that Trey is unable to wake up and see us but he is getting what he needs right now and that is most important.  We can tell by his heart rate and his eyebrow movement that he knows we are with him ☺.

Another Successful trip to the OR.

This morning Trey made another trip to the operating room.  Being backed into a corner, it was decided that our only option to try and diagnose was to perform a lung biopsy.  This was a very nerve-racking surgery for mom and dad, but Trey did amazing.  His strength, perseverance and never give up attitude inspire us every single day.  He is resting comfortably and remains under sedation to heal from the actions of the day.  In addition to the lung biopsy, he also had two central lines placed to replace some aging access sites.  The sample from his lungs will be traveling a long ways in the next couple of days.  It is going to be analyzed in Seattle, that's right, Trey gets to visit the left coast before his dad! (at least a piece of his lung does)  Slides and pictures of his lungs are also being looked at by doctors in Boston, Denver and Montreal.  We have the best doctors trying to figure our boy out, and we could not be more thankful for that.

Although he continues to make everyone nervous, Trey has proven that he is a fighter.  We have been blessed to know him for five months, and can only hope that today's surgery can produce some answers to the conumdrum that is Trey's condition.  Thanks to everyone who was thinking about our family today; Trey's bravery can only be attributed to the fact that so many people love him already.

Radiology Visit

This afternoon Trey went to Radiology for a GJ Tube placement.  This was basically a procedure which manipulated his feeding tube.  The G Tube was removed and the radiologists used the site to insert a smaller feeding tube into the small bowel (jejunum).  This procedure was done because if Trey's feeds have been going into his lungs (aspirating) and causing problems that would significantly delay his progress.  While the doctors can't prove he is aspirating, this was a relatively simple procedure to avoid a potentially huge problem.  Now it will be nearly impossible for any of his feeds to reach his lungs.  Everything went well - Trey tolerated both the transport and the procedure.

Tomorrow is a big day - Trey will be undergoing a lung biopsy around 10 am.  They will also place a new central line so he can receive IV medications.

Baptism

Trey and Stella were baptised this evening during a very private ceremony in Trey's room.  Dr. Bob Macauley from the Fletcher Allen Pediatric Advanced Care Team (who is also an Episcopal Priest) has been working with us for a few months so we thought it most appropriate to ask him to officiate.  Trey's nurse John took some beautiful photos and immediate family and godparents joined us via webconference.  Thank you to everyone for participating on such short notice, especially Dr. Macauley, Trey's godparents: Melissa and Dan Hooley, and Stella's godparents: Sabrina and Adam Britton.

The Final Pump

After nearly five long months this afternoon was the final pump (we think...).  It has been a few weeks coming, gradually going from six times to two in a 24-hour period.  Stella was transitioned to all formula about two weeks ago, and hopefully the milk that is left will last Trey about another month or so.

We met with the pediatric lung specialist today and unfortunately he didn't have a lot of answers for us.  Trey's lungs are abnormal, but the cause is unclear.  He said it could be the result of several things all combined.  We've decided to proceed with a lung biopsy which will be scheduled for this Thursday or Friday.  A small sample of Trey's lung tissue will be removed and sent to Baylor in Texas  for evaluation where some of the world's leading lung researchers are.  Hopefully this procedure will provide some answers to the questions we have about his health. 

We want to send birthday wishes to Aunt Melissa in Ohio.  We love & miss you!