Swaddling

I'm finally finishing the book 'The Happiest Baby on the Block' which I started to read before I went into the hospital.  The book has taught me the art of swaddling.  Stella used to sleep with her arms out, but now we'll be trying arms down and swaddled.  She isn't a fussy baby and she does sleep well at night (except for last night because she literally slept the entire day yesterday!) but everything I've read indicates swaddling makes babies happy.  It has even brought comfort to Trey over the past few days which amazes me because he gets warm so easily.  Trey is continuing to do well intubated and every day is one step closer to the doctors feeling ready to attempt a pressure decrease - which will hopefully happen toward the end of next week. He had an eye exam today which is still showing immaturity so he'll have to have it repeated again next week.  In addition, they will do another echo of his heart on Monday to be sure the steroids aren't causing any problems with his heart - this test has been initiated because he has had some elevated blood pressures.  They are also keeping a close watch on his urine output which was slightly lower today.  Trey is steroid dependant right now which is ok, but the doctors need to be sure that any problems they cause with his heart and/or kidney are treated timely.  Trey has been coming out of bed twice each day now, and he really enjoys being held as any three month baby would - mom enjoys it too!

Genetic Tests

Trey is doing well being intubated - we are so proud of him for tolerating what must be a really uncomfortable breathing aid.  He has a very tough life right now and the best we can do for him is be by his side and hold him as often as we can.  Aside from dietary and medication adjustments there's not much news.  Now we just wait and watch as both babies continue to grow.

We forgot to mention that the genetic tests we mentioned a week ago have been postponed.  Since Trey received a blood transfusion the day before the bloodwork was to be drawn for testing there has been a delay.  It is necessary to wait two weeks from the transfusion date before blood can be sent out - we need to make sure it is Trey's blood that is being tested!  So we don't expect any test results for another three weeks.

Care Conference

When we first came to Fletcher Allen in mid-December we were assigned a social worker, Deanna Chase, to help us through our hospital stay.  When the babies were born Deanna began providing us with lots of services - she connected us to RMH, provided us with gas cards and ferry tickets through the Children's Miracle Network, is helping us apply for in-home services once we are able to bring Trey home, and arranged the meeting we had today with Trey's doctors and nurses (Thank you Deanna for all you do for NICU families!).  Typically a care conference is arranged just before a baby is discharged, but in our case we met to discuss a plan for Trey moving forward.  There were three attending neonatalogists, a neonatalogist fellow, a pediatric pulmonologist, the babies pediatrician from Malone Emile Bernedot (whom we haven't met yet!), and three nurses from Trey's care team present, as well as Deanna who documented our meeting.  It was really incredible to have such great minds all together discussing plans for our little boy.  We discussed the possibility of sending Trey to Boston for a tracheostomy, which would enable him to receive a high volume of pressure into his lungs through his throat verses his mouth or nose.  As parents we are hesitant to do something so invasive so we've decided to wait it out for a bit and see what Trey does.  We will have another care conference in three weeks and talk about the next step then.

Infant CPR

Mom, Dad, Grandma Todd, and Grandpa and Grandma Goolden had dinner out this evening followed by an infant CPR session with Trey's nurse Julie.  All five of us had our own baby dolls to practice with.  It was very informative and we all feel prepared now for the worst.  If our readers learn anything about newborn care from our blog we hope it is the importance of hand washing and preparing for emergency situatuions - infant CPR can save lives (even for babies without respiratory problems)!

EXCITING NEWS: After nine long days Trey was finally able to come out of bed this evening.  It was a big surprise to mom because Trey still has an arterial line which is very sensative to movement.  Trey is a big boy though and it was good for him to be held.  It was good for mom too!

Welcoming the Weekend

There's not much news today but we sure are glad the weekend is here and we can all be together for a few days.  Trey continues to make good progress and Stella is is doing well.  Tomorrow Grandma Todd and Grandpa and Grandma Goolden will be here for a visit.  Mommy sure loves having company as it sometimes gets lonely here.

Moving Things Along

Trey had another good day and some positive steps in the right direction were made.  His vent settings were adjusted down - both the amount of breaths per minute the machine provides him and the amount of pressure being pushed into his lungs were decreased.  The muscle relaxant he was getting has been discontinued, and they hope to begin feeding him breast milk again tomorrow.  Each of these small steps will help achieve extubation, so it was a good day!  We look forward to the day when he doesn't have fish lips anymore!

Although it seems unfair to bring Stella back into the NICU she doesn't seem to mind spending her day there and the staff love having her so she does get plenty of attention!  Here she is with Resident Fara and Shirley, the Unit Receptionist.  Fara even read her some NICU medical information today but opted for Clifford after Stella got bored with the NICU jargon and started to fall asleep!  Thank you Fara and Shirley for spending time with our girl (and to everyone else too!). 

Small Steps

Trey had a relatively good day today.  Some of his settings were adjusted down, he's requiring less oxygen, and some of his medications have been adjusted.  The muscle relaxant has been cut back so he is beginning to move around a lot more, has been awake some, and is doing a good job breathing over the ventillator regularly.  Overall he is doing well.

Stella has become little miss popularity in the NICU.  She is a social butterfly being passed around among the staff.  They are very generous about taking care of her to be sure I have some time to be with Trey when Randy is away.

Stella's Inspirational

There isn't much news with Trey today other than some adjustments with his medication to keep him comfortable.  Stella's growth continues to be a reminder to us that Trey will eventually get better.  It is hard to believe that just a few short (though they may seem long to us) months ago Stella only weighed 3 lbs.  The pictures are a comparison from where she's been to how well she is doing now.  Like all of the NICU staff says 'babies thrive in the home environment'.  We are looking forward to the days when Trey can be settled into our home.  

A Cheerleader for Trey

Stella is becoming such a big girl.  She now weighs 7 lbs. 9 1/2 oz. and is 20 1/8 inches long.  Since Trey is a little under the weather with very few changes taking place, Stella has become his #1 cheerleader.  Today we came up with this chant:

Let's go Trey!

I want to go home and play!

Let's go Trey!

I can't wait for that day!

You can do it - Gooooo Trey!

Rocky Times

Last night Trey started to breathe over the vent which was a good sign that he wants to do things on his own.  Some of the vent settings were adjusted down but later were turned back up after some poor blood gas readings.  Today the focus was on getting him prepared for more improvements by administering some diuretic therapy, giving him a blood transfusion, and starting to decrease the sedative (Trey will remain on pain killers, but he needs to participate in the ventillator weaning process so they will slowly cut back on his sedatives).  After nearly 36 hours without any major episodes Trey's oxygen saturation levels plummeted this evening requiring the respiratory therapists to manually assist him with his breathing.  They were able to stabalize him relatively easily, but these incidents are scary and unexplained.  Shortly after this episode he had a very good blood gas reading so hopefully we'll see some positive progress going into the late evening and early morning hours.

Positive Steps

It is truly devastating to see Trey back on the ventillator, unable to come out of bed.  Fortunately the doctors say he is doing better than they expected and some of the vent settings have already been adjusted down throughout the day.  They even moved the crash cart away from his bedside which makes us feel really positive about his progress!  Trey is a very sick little boy but he has been blessed with superior care.  We want to give a shout out to his NICU nursing care team: Barb, Heidi, Julie, and Kristen.  They really care about his progress, have all offered to work extra hours to get him through this set-back, and are working hard to help include us as much as possible while he is restricted to bed.  I got to do some little things with Trey today besides talking to him and reading him our book - I took his temperature, helped change his diaper, and massaged his limbs.  This has been a huge set-back but we believe in Trey, we believe in his doctors and modern medicine, and we believe in the power of prayer.  Please keep them coming everyone!

Necessary Maintenance

Today was like a maintenance day for Trey.  After a busy night of struggling lots of maintenace type procedures were accomplished today.  Several access points were initiated for Trey (IV's and a central line) for medication and nutrition purposes, as well as for drawing blood for gas readings, labs, and tests.   He did have a few episodes that required manual resuscitation but after altering his medications he has settled out and seems relatively stable.  Good blood gas readings have even allowed the vent settings to be lowered slightly.

The viral tests all came back negative so it doesn't appear as though he is sick.  We will find out if he has a bacterial infection within the next few days.  The most recent chest x-rays don't appear to show any sign of aspiration (inhalation of milk into the lung cavity).  So far why Trey is experiencing this major set-back is an enigma.  The next step will be to do some advanced testing for any disorders that could cause his inability to breathe on his own.  Some things he will be tested for are fatal, others are incurable.  It has become important to know if he has an identifiable reason for the drastic difference between the course he has had compared to Stella.

For now we wait to see how he does.  We are starting to go through the 'why is this happening' stage.  Everyone here is completely paralyzed by this sudden change in his status.  We had no warning sign, no indication that his progression was slowing.  Continued prayers is all we can ask for - what exactly to pray for in terms of helping him is unclear to all of the doctors, but praying that he gets whatever it is he needs is critical now.

Looking ahead there are a few more options that can be explored if he doesn't turn a corner soon.  We could look at options of more invasive respiratory support, and/or we could be sent to Boston, MA where they can provide more aggressive treatment.  We are all hoping he can get better here where we are comfortable with the NICU staff and managing with the blessings of having access to the Ronald McDonald House. 

Again, thank you to everyone for keeping all of us in your thoughts and prayers.

Rough Days Ahead

The NICU rollercoaster reared its ugly head today.  This morning around 9:15 Trey started to take a turn for the worse.  His oxygen saturation dropped suddenly and he was unable to bring it back up on his own.  They increased the high-flow oxygen to six liters, and administered albuterol (a rescue inhaler) twice.  They also began a dexamethasone treatment (the aggressive steroid we had been avoiding).  He appeared to have stable vitals and was maintaining baseline stats throughout the day, but repeated blood gas tests showed extremely elevated carbon dioxide levels.  He was reintubated around 6 o'clock this evening.  Everyone is completely surprised and disappointed.  The NICU staff was absolutely wonderful to us today, helping out with Stella, offering hugs, and sharing kind and compassionate words. 

The good news is Trey is comfortable on the sedative they are giving him, and he is completely stable on this increased respiratory support.  Now we can only wait it out a few days to see what happens.  The doctors suspect he either has some type of infection, or that he inhaled milk into his lungs.  He is being treated with antibiotics just in case he has a bacterial infection, and they will continue to look at chest x-rays to see what's happening with his lungs.  The bad news is that the ventilator will aggravate his chronic lung disease, so the goal will be to extubate him as soon as possible.

A good article which helps explain our lung functions can be read here:
http://www.lung.ca/lung101-renseignez/respiratory-respiratoire/how-comment/index_e.php

Kodak Moments

We don't have much for news today.  Trey continues to do well with the long slow process of growing healthier lungs.  We both enjoy the time we have with the babies as we long for the exciting day that we can take them both home.  Since we've had some requests to keep the pictures coming I'm posting a few from last week.

I do want to mention that I ran into Carleen Meseck today.  Carleen spent time in the NICU with her son Ty, who was discharged in February.  They were visiting Fletcher Allen today for a doctors appointment.  Ty is on oxygen and he looks great.  Since our little Trey will without a doubt be sent home on oxygen for several months it was comforting to see a baby in the community on oxygen doing so well, and to see a mom handling the situation so gracefully.  Thanks Carleen for stopping by the NICU to say hi!

Sleepless Nights

Stella pulled her first all-nighter (practically) last night.  Somehow we managed to get through the day with very little sleep - she did just fine because she naps well during the day through all the NICU noise!  Here's hoping that tonight she'll be somewhat tired so I can at least get the usual five hours.  Dad's working Tuesdays, Wednesdays, and Thursdays for now so we can't wait for him to get back Thursday night.

There were not many changes with Trey today - he is still on 4-liters of high-flow which is good news.  He's still bottle feeding when he feels like it, and he's still a happy boy which for us is progress!

An Echo for Trey

Today some progress was made in the respiratory category - Trey's high-flow was adjusted down to four liters and he responded well!  Decreasing the amount of pressure he requires will allow us to go home, so this was exciting news!

They also took pictures of Trey's heart today.  We haven't heard any news about the results, but at this point no news is probably good news.

Stella continues to do well - she is starting to be really good at letting us know what she wants!

Daddy's Back!

Somehow the four of us managed an entire week apart and are so happy to all be together again.  Both Stella and Trey enjoyed Daddy time today!  There's not much news as far as an update goes - Trey was requiring a bit more oxygen this morning than he has in past days, but after a few hours he settled in to what is considered normal range for him.  He even ate an entire bottle this afternoon which was really exciting!

Spa Day @ the NICU

We gave Trey a bath today as well as his second manicure.  NICU staff are not allowed to clip or file babies finger nails, but the parents can.  Last weeks attempt with a baby nail file wasn't very successful so this time around we used an emory board.  Trey enjoyed his bath for the most part.  Stella also had her second bath of the day when we were visiting the NICU after a messy pants episode - the pear juice she is getting to help her figure out how to go to the bathroom (a common chore for preemies) is definitely working!

 

Stella's Awake!

Miss Stella spends most of her time sleeping, except for the hours of 7-11 pm, but this morning she was wide eyed from 6-11 am!  It was nice to have her awake and alert during daytime hours.  She is doing fabulous and continues to be spoiled in the NICU when the nurses have a free moment to snuggle with her.

Trey is working so hard to breathe but continues to stay focused.  When he is up for bottle feeding he nearly finishes the entire bottle.  His strength and determination continue to amaze me.  He gained almost 2 1/2 ounces yesterday, which was his third consecutive day of gaining weight.  He now weighs 5 lbs. 8 oz.  Once he has gained more weight they will consider lowering the high flow pressure - which will be our ticket out of here.

Our Due Date

Today is the official 40 week mark of our pregnancy.  We were never attached to the date but it was the twins due date nonetheless.  Most NICU babies are discharged by their due date and we never dreamed we'd be here for this long so this is a milestone which brings mixed emotions.

Stella had another eye exam today whish showed her eyes have fully matured.  So as the doctor said 'she has graduated from Dr. Mallay's office'.  She will have a follow-up for strabismus in June.

There were no changes with Trey today.  He slept a lot today and it was good seeing him rest.

Joan and Dave Dox were at Fletcher Allen today.  Joan stopped by the NICU waiting room to meet Stella - they had some nice cuddle time while I ate lunch.  As always it was nice seeing a familiar face from home.

Day 75

It has been 75 days since we've been in Burlington.  75 days since I've been home. 75 days since I've held our cat Cole, slept in our own bed, walked to the mailbox... The littlest things seem so distant to me now.  Luckily staying at the Ronald McDonald House helps give us a little tiny bit of normalcy - like doing laundry or making a meal (I've cooked just three times in 75 days).

The babies continue to do well with very few changes.  Trey gained just over 1/2 an ounce last night, and the nutritionist increased the amount of feeds he receives the oil substance from two to three in hopes of boosting weight gain.  The doctors arbitrarily chose April 30 as his discharge date today, but the truth is nobody can say when Trey will be well enough to come home.  It has been a very long time since they've seen a baby like Trey - one of the doctors referenced Trey as 'doing it the old-fashion way'. 

With Randy back at work I've become more organized out of necessity.  Today was very productive - I spent eight hours at the hospital with Stella and Trey, had a conference call with work (Stella was such a good girl when I was on the phone!), did a load of laundry, touched base with our future childcare provider, simultaneously nursed the babies (NICU staff love this!), and somehow managed to eat three meals.  Miraculously on three consecutive nights of just five hours of sleep.  Somehow it's all coming together and for the first time I realized how much I really love being Stella and Trey's mommy.  When the four of us finally get to go home together and put this whole experience behind us it will all have been worth it.

Many Thanks

Today Stella had a doctors appointment so she could get her first series of vaccinations.  She weighs 6 lbs. 11 1/2 oz. and is 19 inches long.  No changes were made with Trey today.  He continues to be comfortable and has become a really happy baby - everyone around him notices the change in his demeanor without cpap.

Since there isn't much news with the babies today we thought we'd take the opportunity to say thank you to everyone for your love, prayers, support, and generosity.  We wouldn't have come this far without all of you.  We can't possibly thank everyone here because we've had an enormous amount of support, but we wanted to give a special thanks to a few people:

Marci (Gordon-Jones) Costello for suggesting we start this blog.  Beth has known Marci since childhood and both went to West Virginia Wesleyan.  Marci personally delivered her Alpha Delta Pi bid and the unique connections haven't stopped there.  Marci is also a NICU parent and has offered to provide comfort and advice through this difficult time.  Thank you Marci for being available in case we need you, and especially for encouraging us to blog - we've heard people love the site and it was crucial for us in the beginning weeks when we could barely even speak with immediate family about this painful experience.

Grandma and Grandpa Goolden for visiting Burlington nearly every weekend since Christmas.  Your love and support can never be repaid and we are so grateful for all the time you have dedicated to our family already!

My sister Mary Jane and her family for taking care of our cat Cole and our home throughout January and February, and Grandma Todd for staying at our house in March until we can make it back to NY.  Cole is surviving this awful ordeal thanks to your help!  (I hope he remembers mom when we finally make it back - she sure does miss him...)

Jim Dowd for covering for Randy at BMC during a large portion of our time away, as well as Tim McCarthy and Dan Mills for coaching the basketball team in Randy's absence.

Many, many colleagues at SUNY Potsdam for covering for Beth and giving her much needed flexibility during this long and painful experience.  A person couldn't ask for a better employment situation given the circumstances.

Again, a huge THANK YOU to everyone for thinking of us, saying prayers, and providing support in your own unique ways.  We won't list everyone for fear of leaving someone out, and also because the list would go on and on - we are so very lucky to have so many people who care about our family.  We truly are blessed with two beautiful babies and a truly remarkable support network.

Our Little Engine that Can!

Trey is doing very well with the respiratory support the doctors have chosen for him but unfortunately they haven't been able to lower the support at all over the last few days.  This morning they requested another blood gas and chest x-ray.  Both showed no changes.  Since the goal is to decrease his support and nothing appears to be hindering his progress they opted to increase (or double) his steroid dose.  For those of you interested in the specifics the name of the steroid he is being given is prednisolone.  Let's hope this increased dose will give him the push he needs to start lowering the amount of pressure and oxygen he is requiring to breathe.

Since we've been here forever it seems we are now willing to try just about anything to help Trey get home.  We ordered some Mozart music players for him on Friday after seeing an article circulating the NICU about babies with respiratory problems healing faster when they listened to classical music, specifically Mozart.  We also bought him the book 'The Little Engine that Could'.   Co-Bedding is not recommended here because it has been linked to SIDS, but as Nurse Heidi says Mommy 'supervised' Stella in the crib with Trey today and read them both the story.

We forgot to mention earlier that another Ronald McDonald House guest with twins in the NICU left this week and she suggested we request the suite she was in.  We did and the staff here was happy to accommodate us.  We are now in a much bigger room with two twin beds and a pull out double sofa sleeper.  This room is much more spacious than our last so we now have plenty of room for Stella's things and we were all much more comfortable this weekend when Grandma and Grandpa Goolden visited!

Great visitors, good times, we continue to be lucky!

Through the tough times, it is great to realize that there are so many great people in our lives.  We want to continue to thank everyone for their thoughts and prayers, it will be a wonderful day when the four of us come home.

There are no new updates about the babies.  Trey continues to be on the same plan and seems like a very happy boy, besides the fact that he is working hard.  Stella continues to get bigger and is double the size of when she was born.  Here is a picture of the two of them back together.

Grandma and Grandpa Goolden stayed at the house to watch Stella for the evening while mom and dad went shopping and out to dinner with Carl and Kristen Zender.  It was nice to relax and talk with friends we had not seen since December.  Thanks to the Zenders for a great evening.  Now we are just relaxing watching Duke vs. UNC, go Blue Devils!

Friday's Update

Trey has remained on high-flow oxygen, but not without some hard work!  They have altered between four and five liters of pressure (generally in the NICU the highest they go is three, but Trey is too old for CPAP so they are making it work with some high-flow adjustments) and despite a slightly elevated respiratory rate he is managing on four.  We met the lung specialists today who has become part of Trey's care team.  Trey will see him as an out-patient in years to come so it was nice meeting him and getting his perspective at this early stage.

Stella continues to do well.  She grows more and more everyday, and always brings a smile to our faces.

Thanks to Michelle and Jay Garrow for thinking of us when they would be visiting Burlington for an appointment.  Michelle has lived the RSV nightmare and was very respectful about not touching Stella or allowing Jay to get too close.  We had a nice lunch at Applebee's and were lucky because nobody tried to get in Miss Stella's face and she slept through our entire meal!

No More CPAP (Hopefully for Good!)

Trey has done well transitioning to high-flow.  He is much easier to take in and out of bed now, so he has been getting lots of attention and is a happy boy!

Stella has been spending some time with Caroline, a Fletcher Allen Volunteer.  Caroline generously gives her time visiting the NICU to be with Stella so that I can have some quality one-on-one time with Trey when Randy is away. Thank you Caroline!

Miss Stella is very much acting like a newborn these days - hence the time of this posting.  She likes to sleep during the day and play at night!

A Crib for a Bed

Our sweet boy experienced lots of changes today!  He was moved to the back of the unit into a crib since the isolet is too warm of an environment for him.  This meant that he finally got dressed and wore clothes for the first time.  He had a second eye exam, which revealed immatury still so it will be repeated.  He transitioned from cpap to high-flow oxygen, and lastly, the steroid we thought he would be on for 21 days was changed to a steroid treatment used in pediatrics which doesn't have the same side effects (yeah!).  He finally was able to bottle feed again which he really enjoyed.  Hopefully the steroids he is being given will be enough for his sick little lungs to grow and heal.  Stella is doing well and is patiently waiting for her brother to join her just like the rest of us!