Steroids for Strength

Grandma and Grandpa Goolden visited this weekend to help out with Stella while Randy was at home.

Kristie visited Burlington for a family fun night so we met up for breakfast Sunday morning.  The staff member who took our photo studied media relations, so she humored us with a pic for the blog!

Stella visited her brother today, who wasn't having the best of days.  After a restless night fighting with his cpap, a poor blood gas, and visually having a really tough time breathing, a third round of systemic steroids was started - this time a 21 day treatment.  Although we weren't big advocates of using this steroid again we believe it is the only fair thing to do for him given his current state.  The out-patient steroid is a great idea, but it just probably wouldn't be strong enough.  He will likely be given the out-patient steroid after this 21 day treatment though.  This picture is from a very brief period where Trey was without his cpap (occassionally when he is really upset they give him a couple of minutes without it so he can regroup -it works everytime, he is a happy boy without the cpap!)  If he responds as well to the steroids this time as he has in the past he should be trialing off cpap by the end of the week.

A Teaching Hospital

Trey continues to hold his own but since he is not progressing well discussions about starting a third steroid treatment continue.  The doctors have respected our choice to avoid a long-term systemic steroid treatment which has been linked to developmental delays.  Since Fletcher Allen is a teaching hospital a lot of research is performed here.  The doctors are very familiar with steroids and having talked through our concerns they've opted to treat Trey with a less agressive systemic streroid that is given to outpatient babies.  They said they aren't sure why they didn't think to try this sooner - the only downside is that it could be a longer treatment - but we avoid any extreme side affects by taking this approach.  For now, the inhaled steroid (which only impacts the lungs, rather than other organs like systemic steroids) treatment has been increased from two doses per day to four.  We will see how Trey responds to this over the next few days before advancing to any further systemic steroid treatment.

Stella is doing well and is enjoying time with Grandma and Grandpa Goolden this weekend while Randy is home with his team.  The boys are working hard - they won the Class C title today - congratulations guys!

No News Is Sometimes Good News

Aside from some modifications to Trey's nutrition plan there were no changes today.  They have adjusted the recipe for his fortified breast milk to cut back on protein, and they are also adding an oil to increase the calories.  Hopefully these efforts will help him gain some weight (he's currently 4 lbs. 8 oz).  His blood gas levels have been inconsistent, making it difficult to make any concrete decisions about moving forward.  The doctors are going to wait it out a few more days before making any major changes.  Stella had a good day today.  She is starting to be awake more during the daytime and is starting to be more aggressive about letting us know what she wants and when - and lets just say she's not always patient about it!  I had a talk with her today about how she'll have to wait her turn when her brother comes home - which is a day we all can't wait for.

Grateful for Stability

Today Grandma Todd headed back to NY - thanks so much for visiting and spending time with Stella so I could be with Trey while Randy was away.  BMC won the first playoff game, so the team will play against Tupper Lake this Saturday.

We don't have much news on the babies today. Stella had another eye exam which looked good but still shows some immaturity - she'll have another test in two weeks.

Trey started out the day with a poor blood gas reading, but after making a transition from the cpap mask to the cpap prongs until further notice his blood gas improved.  The plan is to make as few changes as possible over the next couple of days and see how he does.  For now he seems comfortable and stable and although he's not improving, we are so grateful that he's not moving backwards.

About Chronic Lung Disease

The combination of Trey's early arrival, the two lung infections they believe he had, and his time spent on the oscillator and ventillator have made his time in the NICU particurarly challenging.  I found some information online today that will hopefully help all of our blog followers better understand what's going on with Trey.

http://www.aboutkidshealth.ca/PrematureBabies/Chronic-Lung-Disease.aspx?articleID=7780&categoryID=PI-nh1-04c

Trey held his own last night and today so no changes are being made.  Randy and I have expressed our concern of advancing to another steroid treatment, which has its own set of potential complications down the road.  We have been assured that this will be a last resort treatment used only if absolutely necessary.

Stella spent more time with Grandma Todd today while I visited with Trey in the hospital.  I had some nice cuddle time with him which he tolerated well.  Tomorrow Stella has an eye exam so she'll get to visit Trey for a little while.  (Trey's eye exam was scheduled for today which I requested they postpone - the doctors agreed that he didn't need to go through that stress right now so he'll have his next week instead.)

Thank you everyone for your warm comments and for your prayers for our family.  We draw our strength not only from each other, but from all of you too!

Prayers for Trey

Trey continues to slide downhill as he attempts to recover from his high-flow trials and withstand the last of his systemic steroid treatment.  As the Neonatal Fellow Kendra says 'the honeymoon is over'.  Because Trey's status is so much worse than a week ago, the neonatal team has devised a plan if he doesn't start to come out of the slump.  We would advance to another type of breathing aid and begin a long term steroid treatment.  In reality there isn't much we can do for Trey so we are just asking that everyone prays for our little guy.  We believe in him and are hoping that we can avoid another round of steroids.

Miss Stella is doing well, weighing in at 5 lbs. 11 1/2 oz.  She spent some time with Grandma Todd today who is visiting Burlington to help out while Randy is home.

Bittersweet Farewell's

This weekend we had lots of family visitors.  Since Stella was premature she is at risk of catching RSV, a very serious respiratory virus that can be extremely dangerous for children (it is basically the common cold in adults).  While we have to be very cautious with visitors and shouldn't be taking many until the flu season passes, we made an exception for family - which included lots of hand sanitizer!  The Goolden's, Perrin's, Hooley's, and Todd's spent a night in Winooski, just down the hill from Burlington.  We had take-out lunch at the hotel, napped, and then went to Pizza Putt - a fun center for kids.  We were fortunate to get a corner table in a private room of the dining section so Stella was kept away from people while the kids got to enjoy the games.  We were sure to bring our stop sign carseat attachment that says 'Prevent RSV - Please wash your hands before touching mine'  which we have changed to say 'Please don't touch me, I'm premature'.  The doctors say you can take Stella anywhere, but she can't be touched!  Her public appearance will likely be the last one for a long while but the exception was worth it!  Everyone had a nice time and we finished out the evening relaxing at the hotel.  8 am came quickly and we shared heartfelt goodbyes.  Patti, Hank, Haley, and the baby to be will be venturing off to Hawaii for a new life in just a few short days.  We are so excited for them, but sending them off was difficult.  Stella and I had another sendoff when daddy headed home this afternoon to be with his team before the Tuesday playoff game.  We anxiously await his return but are cheering on the panthers from here in the meantime!  After a tremendous week of progress Trey started to slip a little bit this weekend.  We have tired him a great deal from his high-flow trials, and today was the last day of his second steroid treatment.  He is now exclusively back on the highest cpap level recovering from the attempt to move him toward breathing independantly.  Trey will get better but as he's tried to tell us before taking things slow - very slow - works best for him.

Sleep, Sleep, and More Sleep...

It has been just wonderful having Stella at RMH with us.  She is such a good baby.  She spends most of her time sleeping though, which has allowed us to take our first naps since the twins were born.  To spare bringing Stella back and forth we continue to visit Trey at the hospital in shifts.  This gives each of us some quality time with each baby.  Trey has done well switching between the cpap and high-flow oxygen and since he has been through so much the 6-on/6-off plan hasn't changed.  The doctors want to be sure they give him adequate time to adjust to high-flow.  Stella's first doctors appointment yesterday went well - she weighed 5 lbs. 8 1/2 oz!

First Night/First Bottle

We had a great first night with Stella - she is such a good little baby!  Today we split shifts to spend time with Trey: Mom visited the hospital in the morning while Dad stayed with Stella, we spent the afternoon at RMH, and switched for the evening.  It worked out nicely.

Today Trey trialed on high-flow oxygen for six hours and did great!  He also tried a bottle for the first time (which is rarely given to a baby on high-flow oxygen but the nurses felt he was ready)!  Dad said he did great!  Mom missed out but was happy to hear the news.

Stella's first doctors appointment is tomorrow morning so we plan to have her visit her brother in the NICU.  Here's hoping we can get out the door on time!

6 weeks...

The past six weeks have flown by...it is unbelievable that stella and trey have been here that long already.

Great news...

Stella is going to be able to meet the Goolden family this weekend...she was discharged today!!!  Her stay in the NICU was shorter compared to the average for a baby of her birth weight.  She is doing wonderfully, mom and dad can't stop staring at her!

Trey has been given some trials on high flow oxygen...he was awake for three hours tonight while he sat out with dad.  He was alert and reacted to voices and was very active in his movements.  There is no doubt in our minds that he will be heading home when he figures out the whole breathing thing.  That might not happen for a while, but we can all be patient, he is a cute little bugger!!

Just Another NICU Weekend

This weekend was very positive for both babies.  Stella began ad-lib feeds on Saturday and has responded very well.  Today she was moved to a standard bed to test if she can hold her temperature on her own.  This is basically the final test for her before she can be discharged.  She also had her first vaccine today - for hepatitis B.  Since Trey has had a couple of good days they decided to trial him off the cpap today.  He was on high flow oxygen for 2 1/2 hours and did very well.  He was switched back to cpap to be cautious - we didn't want him to get so tired that he wouldn't recover.  Hopefully tomorrow he will have two 3-hour trials on high flow. Thanks to Grandma and Grandpa Goolden for visiting on Saturday night.  We had a nice dinner out at Chili's (courtesy of the Andre's - thanks Donna!).

40 days and 40 nights

Today the twins are 40 days old!!  We can't believe it. 

Stella had a great day.  She took a bottle for five consecutive feedings!  Although she did not completely eat every bottle, this feat might allow her to be put on ad-libbing, which means she will eat whenever she feels like it.  No more strict schedule.  Once she proves that she can gain weight while doing this, she will be extremely close to being discharged.

Trey seemed to show slight improvement.  He is currently on the lowest % of oxygen that he has been on in three days, and he seems to not be working as hard to breathe.  It seems like the steroids are getting ready to take affect.  The NICU was a very busy place today which means it wasn't real quiet.  This is not the best environment for Trey since he can be very irritable at times.  He had a couple episodes due to excess noise, but this just means that he is getting back to himself.  We are excited to see what the next few days bring when the steroids take true hold!!

The 12-Day Plan

Since Trey isn't getting any better and he continues to struggle to hold his own off the ventillator the doctors developed a new plan today.  They started another course of systemic steroids which will last for 12 days.  Trey responded well to his first course of steroids so the hope is that this second treatment will get him through this rough patch and ultimately off breathing aids all together.  Wish him luck!

Stella is doing 'very good' (as her nurse Liz would say) in the transition unit but didn't take as many feedings by bottle today as she has in the past.  She is gaining weight every day though and now weighs nearly 5 lbs.!

Stella Takes a Bath!

Wednesday, February 10 - The Twins Adjusted Gestational Age is 36 weeks.

Today we gave Stella her first real bath.  She hated it!  She cried the entire time.  It was right before her 3 o'clock feeding and she was a hungry girl.  We will try to upload some video for everyone soon.

Trey had another steady day.  He is struggling to breathe but he is holding his own.  The doctors ran additional tests in the evening (for infection), and took another x-ray.  Since they didn't find anything new we are all hoping that if we give him a chance he will be able to do it on his own with time.  He is back on full feeds and the nutrition should help his little lungs grow and heal. 

A New CPAP Mask

Trey had another tough day respiratory wise.  He is still laboring a great deal to breathe and he continued to dislike his cpap so much that he would rip it off which made it even more uncomfortable and made him even madder making it all the more difficult for him to breathe.  To help him out the Doctors decided to allow him to try a cpap mask that is new to Fletcher Allen.  He likes this so much better than the nasal prongs!  He didn't even cry when the respiratory therapist put the mask over his nose.  Hopefully if he tolerates the mask he will use all of the energy he used to use to fight with the nasal prongs toward something more productive like breathing on his own!

Stella had another good day.  She had her hearing screening today which she passed, and she continues to work on bottle feeding.  The doctors said if all goes well she should be able to be discharged sometime next week!

Stella with Daddy before leaving for the game Monday - She is getting to be a big girl

weighing in at over 4 lbs. 10 oz

(She's wearing her new hat that Grandma Goolden made for her!)

Eye Tests, an X-Ray, Cranial Ultrasound, and a Transfusion

Superbowl Sunday was a steady day for the babies.  Randy and I left the hospital a little early to get settled in to relax and watch the game.  It wasn't the typical superbowl festivities we would have enjoyed had we been at home, but it was nice to take a break from the hospital - I fell asleep before the fourth quarter though (I only watch for the commercials, which were sort of a disappointment this year, so who really cares!).  This morning we slept in for the first time since we've been here and got some much needed rest.

Today was a somewhat busy day for both babies.  Miss Stella had a cranial ultrasound this morning to follow-up on the minor bruising she had from the delivery.  The results were glowing so they won't repeat this test again - the doctors have no concerns going forward in terms of brain bleeds.  This afternoon the eye doctor came to check her retina growth - I'll find out the results of her exam tomorrow.  She continues to practice feeding by bottle and is doing a great job!

Trey also had an eye exam today and the doctor was happy with what he saw.  This test will be repeated again in two weeks.  Trey was having some difficulty breathing all day so we weren't able to do a one-hour trial on high-flow oxygen.  They ordered a chest x-ray to see if there were any complications, but there was no visible change compared to his last x-ray.  He remains on his CPAP, which has been adjusted from a pressure of 5 to 6.  They were also planning to start a blood transfusion around 9 pm, and are going to begin another course of diuretics.  All of these plans should help Trey have the energy and stamina he needs to breathe!

Randy left for home this afternoon to coach a basketball game.  Josh Sevey was poised to score his 1,000 point tonight - sorry I missed the game Josh!  Tomorrow is senior night so Randy will be coaching the last home game of the season - I hope its a memoriable evening for John, Josh, Timmy, and Zach.  Good luck boys!

Splitting Time

Today was the first day that the babies were separated between the NICU and the NTS.  Moving to the transition suite is supposed to be a good thing for Stella, but it sure didn't feel that way today.  With Randy at home, I had to divide my time between the babies.  Mom and Dad are also here so I wanted to spend some time with them too.  Of the seven and a half hours I spent at the hospital I was only with Stell Belle for two.  Trey had a pretty good day but when I was about to leave him this afternoon to see Stella he had one of his meltdowns.  There is always a reason when he gets upset, but it takes a while to settle him down.  It felt really unfair to her.  She had a fine day too, but she was the most irritable I've ever seen her (which truly was mild compared to when Trey is upset), and she wasn't bottle feeding - she was just disinterested today.  I automatically feel like she is rebelling being away from her brother!  But I know that she is probably fine.  Tomorrow will be another day, and with dad back we will be able to split up and give both babies the attention they deserve.

Stella's New Home

We found out this morning that Stella would definitly be moved to the neonatal transition suite today.  I didn't take the news very well.  Normally going to the transition suite would be great news for parents - it means your baby is doing well enough to share a nurse with two other babies (instead of one), and in most cases that your baby is close to being sent home.  For us, and all parents of multiples, having one baby sent to the NTS means splitting up your family.  Especially here, when the NTS is two floors down in the pediatric ward.  It also means that we can't show Stella through a window anymore because it is not set up that way downstairs.  Randy's positive attitude helped me feel better, and we feel grateful that we were able to put the move off as long as we did.  But in the end this change makes a miserable situation worse.

Randy left around 2 o'clock today to go home for a few games - St. Lawerence Central tonight, and Malone tomorrow.  Grandma and Grandpa Goolden are visiting for the weekend.  They arrived at 7 pm, just in time to see Stella through the window one last time.  They made the walk with Stella and I down to the NTS.  For me it wasn't the happy experience going to the NTS is supposed to be, so having Mom and Dad here made it a little easier.

Trey had a pretty good day.  They kept him on cpap the entire day, and will likely do so throughout the weekend.  Hopefully we can give hi-flow oxygen a try again in a few days.

Thursday, February 4, 2009

Thursday was a big day for Trey as the doctors attempted a very ambitious goal - removing his cpap and transitioning to low flow oxygen, skipping high flow all together.  This in addition to adjusting his medications and continuing his feeds.  He did well for the first two hours, but he began laboring (which we could see from the deep retractions in his belly) so they applied high flow.  Four hours later he was put back on cpap because he was just working too hard.  Trey isn't ready to breathe without aids just yet.  It was a good try, but it was unsuccessful.  Hopefully on Friday and throughout the weekend we will trial him on high flow and transition back and forth between that and cpap to give him the practice and time he needs to do it on his own.

Stella continues to attempt to take feedings by nipple and is doing well.  It is looking like she will be moved to the transition nursery within the next day or two.  It appears as though the doctors cannot stahl her move any longer.

Both babies are gaining weight and are overall doing well.  Since Stella may be moved soon, we took advantage of having them together and Dad held both babies at the same time.  It is very cool having them near one another!

Continuing down the positive road...

Any positive day is a good day.  Although mom and dad would love to speed up the process, both stella and trey continued to steadily make some improvements.  Stella continues to practice her bottle feeding and gets better and better each day.  That is her major obstacle on her path home.  Trey was taken off IV antibiotics, and now only has one IV left; his fentenyl.  This was wheened today also, and he seems to be handling the wheening pretty well.  He has started being fed through his gavage again and will be at full feeds soon.  Mom and Dad cannot wait to be able to introduce him to a bottle. 
That's all for now...

A Close Encounter

A few exciting things happened today with the babies:

Trey was able to begin feeds again, he had his last dose of antibiotics, and they lowered his pain medication.  These are all steps toward becoming IV free! 

Stella took a full bottle from daddy for the first time!

Both babies had eye exams to test for a condition called retinopathy of prematurity (ROP).  The results for both babies showed that their eyes are still underdeveloped, as they should be.  It is too early to determine if either baby has ROP, but so far so good!  The test will be repeated for both babies next week.

The most exciting news of the day was that Mommy got to hold both babies together for the first time.  Stella was placed at the edge of the pillow but squirmed her way closer to her brother and ended up curled around his little bottom.  After about 45 minutes Trey started to get a little agitated (probabaly because he was really warm), but Stella didn't seem to mind at all - she slept right through his fussing.  It was really great to have the babies so close again - they haven't been near one another like this since their time in the womb.  Dad went home to coach a game vs. Madrid so he missed out.  He'll be jealous but I'm sure nurse Julie will let him have his turn tomorrow night!

Cuddling with Trey!

Stella and Trey are four weeks old today and are both doing well!  Trey was able to be held by both Mommy and Daddy today - it was his first time out of bed in an entire week.  Stella tried most of her feedings today by bottle and continues to do a great job.  She tires easily but she is really trying.  Trey hates having a breathing aid up his nose, but he managed to stay calm for the majority of the day and the doctors are pleased with his progress.  They decreased his pain medication slightly today which he responded well to.  Hopefully they will begin feeding him again tomorrow.  He loves his pacifier so we are looking forward to trying a bottle with him to see how he does.  We will have to wait until he advances off the cpac though.

Trey's time to get some attention!

Today Trey continued to do OK with his new oxygen accessory. (cpac)  He kept his stats up all night last night and only had a two hour "bad spell" today.  This is a picture of him with his head gear off and just some oxygen flowing near his face.  Without all of the gear, his entire demeanor changes.  As you can see, he becomes a content little baby who cannot wait to explore the world around him!  But he still needs some assistance so he is going to have to put up with some prongs up his nose for a bit. (He has terrible fits and decides he is going to rip them out of his nose.)  Mom and Dad cannot wait to see his true personality when he is able to do everything on his own, but for now we will be patient. (Beth doesn't like this word!)

Here he is again :-)

Stella continues to be awesome. She is taking about 40% of her feedings by bottle.

She now weighs about 3lbs.14oz., passing her brother who is at 3lbs. 12oz.