Monday, May 31, 2010

The Fox and the Hound

It was a quiet day.  There are some terrible forest fires in Canada and the wind is blowing smoke into the city of Burlington - we noticed it first thing this morning.  This afternoon mommy held Trey while we all watched 'The Fox and the Hound' together.  Stella noticed the tv this week so she did fixate on the movie for a short while.  The nitric has been weaned more than half since it was initially started on Friday, but Trey is being kept very quiet and comfortable right now.  Tomorrow we hope to meet with the lung specialist to talk some more bout the CT results.

Saturday, May 29, 2010

Peek-A-Boo

Trey continues to be in a fragile state - the nitric oxide appears to be helping keep his oxygen requirement down, but the amount he is receiving was not lowered today.  The goal for tomorrow will be to begin turning it down to see if he can oxygenate without it.  He is staying sedated for most of the day with only short periods of wakefulness where he just peeks at us.  Mom read 'The Lion King' to him in the early afternoon, and Mom, Dad, & Stella talked to him briefly during the evening hours - NICU Nurse Heidi stopped by for a visit too while he was awake.  We are very sad to see Trey back on nitric, we had hoped the tracheostomy would help him turn a corner.  For now we continue to be patient and supportive by just being there for him.

Friday, May 28, 2010

Nitric Oxide

Since Trey's oxygen requirements have been so high over the past two days the nitric oxide was turned back on.  Nitric Oxide is used to relax blood vessels and should make it easier for Trey to oxygenate his blood.  His dependency on NO to lower his O2 requirement is worrisome, but we continue to be hopeful that the support being provided to him will give him the opportunity to grow and gain the strength he needs to do things on his own.


 
The Parker's stopped by the PICU today on
their way out of town so Stella and I came to
 the hallway to say farewell.  Maddison did
great with her surgery!
 
Randy/Dad should be back tomorrow - we all can't wait to see him.
 

Thursday, May 27, 2010

Meds or No Meds...

(Playtime with Stella)

After having a relatively stable day yesterday Trey came out of bed to sit with mommy around 9 pm.  His time out of bed was short lived, however, because his oxygen saturations began to drop slightly which resulted in him requiring more oxygen (80%).  This trend continued throughout the night and most of today (although he was able to be held again this morning).  The doctors aren't quite sure why he is requiring more support right now but they suspect he could be having a reaction to his medication weans.  They turned his drips back up to compensate and are hoping this will help to turn things around.

On a brighter note,  Grandma and Grandpa Goolden were able to see the babies last night before they flew out for Hawaii.  They made it safely and will be spending the next two weeks with Patti, Hank, and Haley and baby Skye who is expected to join us all in the world this coming Sunday!  We are looking forward to her arrival!

Lastly, thank you to Jenn, Buddy, and Maddison Parker for inviting us to dinner this evening.  They are in Burlington for a procedure tomorrow and treated mommy to dinner @ Texas Longhorn - it was delicious!

Wednesday, May 26, 2010

Another Scare :-(

After having a great day yesterday Trey scared everyone last night.  Around 10pm his heart rate dropped and he stoped oxygenating his blood.  Essentially he had another 'BPD Spell'.  The hospital staff responded quickly and he recovered well.  Today he seemed as if nothing happened overnight.  He hasn't had an incident this bad since mid-March so this was a bit of a surprise to everyone.  It is indicative of how far we have to go - he has sick lungs and it will take time for them to heal and grow.

It was a busy day at the Ronald McDonald House tonight with three fire alarms between 5-6:30.  It turns out there was just a bad censor that needed to be replaced but it was a lot of going up and down the stairs!

The Ronald McDonald House is leased from The First Congregational Church next door for $1 each year.  Today was the exchange of rent and our family was invited to speak about our experience on behalf of house guests.  Thank you to Caroline for taking care of Stella while mommy spoke, and thank you to First Congregational Church for your generosity in making the Ronald McDonald House available to so many families! 


Tuesday, May 25, 2010

The Great Outdoors

Trey took a field trip outside today!  We wheeled his bed through the hospital out the front door and hung out on the side patio for half an hour.  Trey got to hear a bird, a plane, and a truck - he felt the sunshine and the breeze, and even saw a therapy dog on the way back to his room.  It was a really special day.  When you've spent the first 141 days of your life in a hospital the small things matter!  We love Fletcher Allen and all of the awesome staff for helping make the most out of this experience.



Thank you to Jenn (the Respiratory Therapist in charge today pictured with Trey) & Nurse Patty for making this happen!
Trey is doing well.  His respiratory rate has been in the 40's & 50's, and his oxygen in the 40's.  These are big accomplishments for him and gives us hope that we will make it home.

Monday, May 24, 2010

April Trials Bring May Smiles!

We thought this warranted an extra blog entry...

On Sunday Trey's nurses saw him smile, but we hadn't yet.  Today he smiled at dad first, and then mom later in the day!  This is a huge milestone for our little guy and we are so excited that he is moving forward.  He has had a really rough road so far, he works hard every day to keep going and he hasn't had a whole lot to smile about.  One of the reasons we moved forward with the trache was because Trey was beginning to become developmentally delayed in some areas - smiling being one of them.  It is nice to see our difficult decision may be paying off.  We'll try to capture his smile on camera soon.

Field Trips

Trey was a busy little boy today - he was able to leave his room not once, but twice!  This morning he left the floor for a CT scan and then in the afternoon he was taken for another upper GI.  He did really well with both trips but was caught up in all the excitement and didn't take a nap today until 4 pm!  In addition to his travels today his ventilator mode was changed - he is now using Mandatory Minute Ventilation which allows him to breathe on his own.  The machine is basically brilliant - if Trey wants to breathe the machine allows him to, if he doesn't want to the machine will do it for him.  The doctors can keep track of  his progress to see how much he's doing on his own.

Stella is doing great - as usual she was a good baby today.  The hospital has done well accommodating Stella's needs too - she has a really fun bouncy seat that plays music, vibrates, has toys with flashing lights and bouncy springs.  It's a lot of stimulation for a little girl but she loves it!

It was a great day today except when we had to say goodbye for a few days.  The hardest part about all of this is our family being separated.  We are all looking forward to the weekend already.

Stay tuned for tomorrows field trip - outside...

Sunday, May 23, 2010

Routines

This morning mom went to rounds early and talked with Trey's doctors.  Then they had some good cuddle time - Trey was awake the entire time he was out of bed!  Stella stayed back with daddy so she didn't have to have a rushed morning.  In the afternoon we left the hospital to let Trey rest and went for a long walk from the hospital down to church street for a late lunch.  After a couple hours we wandered back up to the hospital and spent a few hours with Trey before bedtime.  He worked on taking his pacifier today and did wonderful.  This is great news because often times babies who have been intubated have trouble eating but it seems like Trey will do just fine!

Today was a very typical day for us when we are all together.  The first week of the babies life was very difficult in general, but especially because Trey was so sick.  We learned early on that you can't live in the hospital 24/7.  With the weather turning nicer, we try to give ourselves atleast a few hours each day outside of the hospital.  We are looking forward to being at home on days like this - to play in our own backyard, and go for walks with our radio flyer wagon (my favorite shower gift that I can't wait to use!).

Saturday, May 22, 2010

Natural vitamin D and renewed cuddle time!!

As Trey continues to be comfortable, the rest of the Todd's decided that they needed to get out of the hospital and enjoy the summer-like day.  Daddy had an idea, and Beth decided to go along with it.  Stella enjoyed her first round of golf!  She never fussed and actually cheered dad on when he made some putts.  Mommy was also nice and relaxed and enjoyed the great day outside.  I can only sum it up in the words of a fellow golfer whom we passed...(to Beth) "Boy, you must be the best wife in the world, I could never talk my wife into something like this!"  Of course, I already knew this, Beth is awesome.

Trey continues to be wheened off his medications slowly.  So far he has handled everything nicely.  He will have a few tests early in the week to look into the possible fistula they noticed this past week.  Until then, it has been great the past two days to be able to hold our son again.  He loves being out of bed and we love cuddling him...awesome.

Friday, May 21, 2010

A Good Day

Trey had a great day today.  They started to cut back on his pain medication and increased his feed volume.  He was on 40 or 45% oxygen the entire day.  He also was able to come out of bed for the first time in 10 days.  His trach may not be completely healed so we still need to be extra careful moving him, but he did have some restful time with mom.  Today he finally was able to completely open his eyes and look around, only for a few minutes though.

Stella had quality time with dad this morning while mom did some work.  Grammie and Pa are visiting for the night so after a delicious meal at RMH made by some IBM staff they visited Trey.  He was really comfortable due to sedation so they weren't able to see him awake, but they saw him nonetheless.

Things are moving along slowly, but we are heading in the right direction and that's all that matters.

Thursday, May 20, 2010

Bronchoscopy

Trey had a bronchoscopy today in his room - they brought all the equipment to him (which isn't uncommon in the hospital).  Mom got to watch and it was a pretty neat experience.  They used a scope to look into his airway, they also flushed some fluid through and pulled what they could back out so they can test the sample to see if they find anything.  A few things they did learn were that Trey has a large epiglottis and some bronchial & tracheal malacia (which is basically softness or floppiness that he will outgrow).  These are all contributors to the difficulty he has been having - they suspected malacia, but the large epiglottis was a surprise!  They also found a small indentation that does have a medical name but I can't remember it and it could be nothing.  They've seen these indentations before, but not in this particular place.  They will do further tests, probably next week, to see if it could be a problem.  Trey tolerated the procedure very well and overall he had a great day.  He's having more periods of wakefullness, and they began feeding him breast milk again.

Stella is doing well and was happy to see her daddy when he made it back.  I was too!

Wednesday, May 19, 2010

Movement - well, sort of...

This morning Trey's trach was changed, not with the style they had planned on because it hasn't arrived yet but the change went well and the site has healed well.  The paralytic has been turned off so he has moved around slightly and has almost opened his eyes all the way.  Since he only peeked at mom today we still aren't sure if he has realized he is in a new room.  He continues to be heavily sedated and the vent is managing his respiratory status.  He is on lower vent settings, and has been comfortable with oxygen in the 40's and low 50's for most of the day.

Tuesday, May 18, 2010

Stella Plays, Trey Sleeps

Stella is getting stronger everyday and is working hard to hold her head up for longer periods of time.  She did great on the floor with her daddy on Sunday morning.

Trey is enjoying his 'vacation' from breathing.  He has been sleeping since last Tuesday which not only has given him a much needed rest, but has allowed time for the tracheotomy to heal.  If all goes well tomorrow the trach will be changed, his paralytic will be turned off, and they will begin cutting back on the sedatives - which will take 20 days to be completely weaned.  Another central line was placed today so the previous line could be taken out - it was nine days old so it wouldn't have lasted much longer and was becoming an infection risk.  By placing a new line today he won't need to be heavily sedated for this project later - thank you to the  PICU doctors for thinking ahead!

Monday, May 17, 2010

Mommy Goes to Work

I went to work today for just one day.  It was my first time on campus since December 4th.  It felt great to be back.  I spent the day cleaning my office (I had lots of mail...), going to meetings, and gathering some work that can be done from Burlington.  Randy and I are so very grateful to have so much support from everyone @ SUNY Potsdam. 




Thank you to Grandma for spending the day with Stella and for making dinner before I headed back to Burlington.  Since I made it back around 9 pm I chose not to visit the hospital.  It was the first day that Trey wasn't with family for the entire day and that part felt awful.  Stella and I are looking forward to visiting him tomorrow - hopefully it will be just one more day before they 'wake' him up.

Sunday, May 16, 2010

Happy Birthday Caroline


Caroline generously gives so much of her time to Stella, and today she kept on giving.  It was her birthday today and she graciously invited us to join her and her friends at her house for a bbq celebration.  Thanks for the hospitality Caroline - we enjoyed the sunshine and socializing!  We've lived in Burlington for five long months and it's nice to say we've made some real friends here. 

Trey continues to do well with the support that is being provided him.  He has spent several hours today on 45% oxgyen.  This is a huge achievement for him, as he generally lives somewhere in the 50's-60's.  Hopefully this is a good sign that when he is 'woken' up at the end of the week he will breath much easier.

Saturday, May 15, 2010

Relaxing with Family



We took a break from blogging yesterday because we were spending time with family.  The Hooley's are visiting NY this weekend for a wedding and they added a few hours to their trip to come see us.  Aunt Melissa and Uncle Dan were able to visit Trey in the hospital.  Although he is paralyzed and sedated, it was still a special visit.  We were especially happy that they agreed to be Trey's godparents!

We had a really fun visit with their family.  We had dinner @ 99's, and played at the pool of their hotel for a little while.  Stella seemed to enjoy the water (although she was barely splashed).  We wrapped up their visit with a trip to IHOP this morning.  Thank you to the Hooley family for such a nice visit.

Trey had a really good day which was confirmed by good blood gases and decreasing oxygen requirements.  A few days ago when Trey was having some trouble the doctors suspected he could have an infection.  Today it was confirmed that he did have some bacterial growth which is typical with tracheostomy patients.  He is being treated with antibiotics so we don't have to be too concerned.

Thursday, May 13, 2010

Unknowns

Trey is recovering nicely from his surgery but he is having some trouble with his blood gases.  He has been retaining high levels of carbon dioxide so they are keeping a close eye on him.  His gases have consistently improved throughout the day so hopefully he is on a good path.

Now that the surgery is behind us we hope to get a better idea of where we are headed.  Just as with the decision to do the trach, Trey will let us know what has to happen next.  Unfortunately, the trach doesn't change anything about how sick Trey is - all it really does for him is change the location where he receives support (which is huge because now he won't have anything on his face!) 

Right now Trey is paralyzed and completely sedated, and will remain so until the trach has healed.  We are looking forward to seeing what the future holds for our little guy!

Wednesday, May 12, 2010

Trach, G-tube and Circ. --> Mission Accomplished.

As we walked in to the hospital at 6:30am, we stopped at the coffee kiosk.  The worker said to Beth; "Boy you are early today!!"  This is the sign that we have not only been here way too long, but also that Beth drinks a lot of latte!

Now on to the important stuff.  Trey went in to surgery at 745am.  The plan was to place a gasterointestinal tube, perform a tracheostomy, and if time permitted and Trey was well enough, a circumscision.  Being the tough boy that he is, he was able to handle all three.  All were successful.  The great thing is that he won't remember any of the procedures and did not feel any of it. (esp. the circ.!)  After a slight battle with bad blood gases in the afternoon hours, he has recovered rather nicely this evening.  He has a long way to go, but these first steps are very positive.  He will be heavily sedated for the next week or so until his neck heels around the trach. tube.  After that will be the exciting time, so we will wait and see.  Hopefully this time to relax and heal will also be what his lungs need to get over the hump. 

We can not possibly thank each and everyone of you who sent positive vibes our way today.  Some of you called, some emailed, some texted, some messeged on facebook, and some prayed or thought about us.  We would like to say thank you, thank you, thank you!  We could not talk to all of you personally, but I'm sure we will be in touch with all of you very soon.

Tuesday, May 11, 2010

Nurse Appreciation Week

We've been at Fletcher Allen Hospital for nearly half a year now - that is just plain crazy...  As we've mentioned before our experience wouldn't be the same without all of the kindness so many people have shown us, espeially our nurses.  Nurses carry immense responsibility & very little authority. Fortunately for us the amazing nurses we've had here are well respected and so far the doctors do consider their thoughts and opinions.  The nurses we have met have made a difference in our lives - so thank you and god bless you to all of the nursing staff!  The PICU is doing an exceptional job at saying thank you to the nurses for all they do - yesterday was frappacinno day, and today they were treated with a decadent waffle breakfast!

Trey had a rough night yesterday, but it was followed by an exceptional day.  Our first PICU nurse has stepped outside of her comfort zone and has allowed us to hold Trey two days in a row (in the PICU intubated babies rarely come out of bed).  Thank you Carol for giving our family this important and special time, espeically before Trey's surgery.  I was able to take a break from the hospital today to do some work, thank you to Caroline for playing with Stella for a few hours so I could concentrate on non-credit stuff.

Grandma and Grandpa Goolden came to Burlington tonight.  They will be with Stella tomorrow through Trey's surgery which will happen at 7:30 am.  We are hopeful that this procedure will be just the change Trey needs.

Two of the many nurses who have touched our hearts: Liz B. & Julie

Monday, May 10, 2010

The PICU

Our move to the PICU happened early this morning - around 12 am.  It was a very late night at the hospital, but the biggest room in the unit opened up so we were transitioned before another patient was admitted into the space.  We ended up returning around 11 am and spent most of the day with Trey.  He has been mostly sedated so we haven't seen him open his eyes yet, which makes us believe he probably doesn't realize yet that he is in a new room.  We are lucky that the Pediatric Residents we have seen in the NICU also work in the PICU, and the same goes for the Respiratory Therapists.  Seeing familiar faces has helped, and so has the warmth and compassion that Trey's new nurses have shown our family.  Randy headed back to NY tonight so that he can work tomorrow and get substitute plans ready for the remainder of the week.  He'll be back tomorrow night so he can be here for Trey's surgery on Wednesday morning.  We are scared and nervous, but are looking forward to what the next couple of days will bring for Trey.

Sunday, May 9, 2010

Happy Mother's Day...sort of...

We would like to wish all of the moms out there a happy mother's day!!  We are currently at the hospital waiting for them to move Trey to the PICU.  We thought this wouldn't happen until tomorrow, but the plan changed for some reason.  This move is definitely bittersweet: we know that this should help Trey get healthy, he is getting to be a big boy.  But, we will miss the NICU.  I know this seems weird, that we could miss such a place, but it is definitely sad leaving.  Leaving the place where both Stella and Trey spent the beginning of their lives is tough because usually when you leave the NICU you are going home.  One of the biggest reasons this is so difficult is the fact that we are "leaving" some great people.  We have been blessed to get to know countless nurses, docs, and respiratory thearapists that have some of the biggest hearts possible.  It goes without saying that we will miss all of them. (Even though we will see some of them down stairs)  Luckily we don't consider this a "goodbye", we consider it a "see you later".  There is no doubt that we will continue to stay in touch with many of the people we have met, and we have also made some lifelong friends.

Trey had a pretty good day.  He had a line placed in his leg and did a wonderful job.  The rest of the day has been rather uneventful, which isn't a bad thing.  The grandparents left this morning after having a Mother's Day breakfast at IHOP. (Mama Beth's new favorite --> "it's like breakfast and dessert all in one! It's awesome.)  Stella is also great, her and dad fell asleep watching golf before we returned to the hospital.

I know I may be biased, but I would be remiss to not talk about one of the best mom's in the world: Bethann.  There are many reasons:
1. Being the greatest advocate possible for her kids.
2. Pumping for 18 weeks and counting when she has hated it since week 1.
3. Continuing to be strong when the majority of us would be in counciling.
4. Being here day after day, especially when I couldn't be here.
5. Continuing to worry about things at home.
6. Still organized enough to pay the household bills, even though I said I would do it!
7. Working on minimized sleep! (Beth used to love her sleep)
8. Staying positive, even in the bleakest of times.
9. Remembering that we need to smile.
10. jkkl.;tfgn l;ou7jmn (that was Stella stomping on the keyboard, well said sweetheart!)

I could go on and on, but everyone sees the point.  Bethann is the love of my life, and the best mom ever.  Although this has not been the most ideal first mother's day, I would not trade her or our little angels for anything in the world.  Her love keeps the four of us together and on the right track. 

Beth, we love you!
-Stella, Trey, and Randy
Happy Mother's Day.

Saturday, May 8, 2010

Changes galore, and wonderful introductions!

Friday was not only hectic because of all of the decisions being made, Trey also had a melt down that called for some major changes.  All of his ventilator settings were switched around.  Nitric gas was added to his treatment to encourage his aveoli to open up.  He was completely sedated so he would not fight the ventilator, which was also done to maximize the ventilator settings.  Diuretic therapy was also used to try and fix his blood pH level and his base deficit.

 After all of these changes, there was some great news this morning.  His oxygen level continued drop lower and lower.  And on top of this, the pressure he was receiving was also being lowered.  The best news of all is that the x-ray that he got this morning was probably the best looking one he has ever had!  Although Trey still has a long road ahead of him, it shows that the things that we have been doing have been affective.


The even better news is the fact that after four months of life, Trey finally got to meet his grandparents.  Because of the fear of infection, as well as other concerns, the unit is only open to parents.  After 120 something days, an exception was made.  Each grandparent got to spend time with Trey, and even though he was very sleepy (from medication), he somehow opened his eyes for both of his grandmas to see!

Friday, May 7, 2010

Care Conference #3

After Wednesdays incident we asked to move up the next care conference.  A group of doctors met with us on Friday and a lot of decisions were made.

Surgery has been scheduled for this coming Wednesday.  Trey will have a tracheotomy and a gastrointenstinal feeding tube placed.  This will allow him to receive respiratory support through his neck rather than his nose or mouth.  The feeding tube will give us an alternate method for feeding which he will need initially following the surgery and then later on when he is too tired to bottle feed.

Because Trey is now a pediatric patient versus a neonatal patient it makes sense for him to be transfered to a different area of the hospital.  We will be moving to the Pediatric Intensive Care Unit (PICU) either Monday or Tuesday.  The PICU will have several advantages:

  1. We will have our own room
  2. The staff are more accustomed to taking care of trached patients
  3. We will be able to spread out a bit more and use our laptop and cell phone at the hospital when Trey is sleeping
  4. Grammie, Pa, and Grandma can visit
  5. One of us can sleep over with Trey if we would like, which will be really beneficial once we start preparing to bring Trey home on home ventillator support
Friday was overwhelming, there are a lot of changes ahead, all of which are very scary.  We hate to say goodbye to all of the wonderful people we've met in the NICU, and are especially sad and nervous about leaving behind Trey's nursing team and the doctors, all of whom have come to know our little boy well.  The time has come when all of this seems to be absolutely necessary for Trey's continued improvement so we hope to gracefully make the transition down to McClure 3.

Thursday, May 6, 2010

Trey Goes for a Ride

Today Trey left the NICU briefly for an upper gastrointestinal examination.  Since Trey works so hard to breathe, eating is especially challenging and consumes a lot of his energy (which makes it difficult for him to gain weight).  One way to allow him to receive adequate calories without tiring him out is to have a gastorintestinal feeding tube placed.  Although he has been unable to eat from a bottle for quite some time the upper GI plan was initiated last week to prepare for the days ahead.  The test results showed that Trey has no reflux, which means inserting the GI tube should be a relatively easy procedure.  We are looking forward to Trey having this kind of assistance with feeding so we will discuss this concept in further detail tomorrow.

Stella and Trey took a short nap together today.  Stella usually only sleeps well in the NICU if she is being held, but today she must have been so happy and comfortable to be with Trey she did get some nap time in.  Trey has gained good weight - he is now 8 lbs. 9 oz., but Stella still has a bigger head!

Wednesday, May 5, 2010

Trouble

Trey had a really rough day today - he got into some respiratory trouble this morning and was reintubated (again...) this afternoon.  He really scared mom this morning, so this time around the reintubation wasn't so difficult, it had to be done.  Trey is continuing to call the shots and today was a wake up call that nasal cpap is simply not providing him with the support he so greatly needs.  Below is a picture of Fetcher Allen staff stabilizing Trey.  The good news is Trey is much more comfortable now that he is getting the support he truly needs. 

NICU Nurses Pat and Linda with Emily, a Respiratory Therapist, 
Shelley Springer, a traveling Neonatalogist helping out while the 
Attendings are on vacation, and a medical student

Tomorrow the pediatric lung specialists will be presenting Trey's case at a conference in Montreal.  Perhaps he will bring back a different perspective regarding Trey's treatment, or more likely he will return convinced more than ever that the tracheostomy will be the next best step.  On Friday we will meet with the attendings who will be back from vacation to talk about our new plan moving forward.


The Twins spending time with Mommy this morning.

Tuesday, May 4, 2010

NICU Friends

The Mars family stopped by the RMH today on their way to a doctors appointment.  Their twins Brayden and Riley are doing awesome - it certainly gives us hope that eventually the day will come when we can all start our lives at home as a family.  It was good seeing you guys!

Trey had a pretty good day after receiving some extra medicine early this morning, around 6 am.  The only major change was that he will no longer receive oil in his feeds.  He is having good growth so we'll see if he can continue to grow without these extra calories.

I've started my new routine in order to do some work from here.  Today Caroline came to sit with Stella while I was working.  So far juggling both is going well.

We miss Randy/Daddy lots and can't wait to see him!

Monday, May 3, 2010

Catching Some Zzzzz's......



Stella had her vaccines today so she was wiped out for most of the day.  We learned she weighs 10 lbs. 2 oz.  She's a growing girl and she's a good little sleeper!  Trey doesn't sleep much really, he has lots of awake periods but when he is held, he gets nice and comfy and gets good sleep.

Dad headed back this afternoon - we miss him already and look forward to Thursday night when he makes it back to Burlington.

Sunday, May 2, 2010

Waiting It Out

We spent some time outside today wandering around a shopping plaza in Williston.  Stella layed on a blanket for a few minutes and enjoyed a nice breeze - we wish Trey could have been there.  We also took Stella out in a stroller for the first time today.  Just like the car, Stella enjoys the stroller as long as it is moving!

Trey was comfortable for most of the day but he is working pretty hard to breathe.  He has ups and downs, good days and bad days though, so we are holding firm to our plan to wait things out a few weeks.  We continue to believe that it is really important to not react to any one thing and give him the patience that all babies deserve.

Saturday, May 1, 2010

A Break and a Boat Ride

As talk about tracheostomy, oral aversions, developmental delays, and slow progress ensues it is hard not to second guess our plan to give Trey more time before doing anything aggressive with an attempt to get Trey home under uncertain circumstances.  Mom has simply just needed a break so Dad spent several hours @ the hospital today while mom spent just two.  Late in the day a trip to Plattsburgh to visit with some AAU families was a nice change of both scenary & company.  We had a nice visit & are very grateful for the love & support from everyone.