Sunday, February 27, 2011

Count down to March 18th

Last bit of news from our 3-day stay at MUSC... Samuel is officially on the schedule to have his trache removed!!! Whoa - I need to catch my breath :)

Yes, really, March 18th... 2011. I would say we're not counting our chickens before they hatch, but that would be a complete lie :) Don't get me wrong, I say out loud that we completely understand something could happen and the date might get pushed back. We know from experience it happens! But, we are completely counting the days and psyched! It's like a dream... come true :)

The crazy thing is that getting the trache placed was a dream come true, too.

Samuel with his "count down to decannulation" chain :)
Like I said, we can't help but count our chickens!

Happy, happy, happy!
Yes, it's actually Mizzou, but this was our Black and Gold for the Superbowl :)

Saturday, February 26, 2011

Ears and Eyes

The three days at MUSC earlier this week also included further assessments of Samuel's vision and hearing. Regardless of the outcome, I love getting more information! The more we know about what's going on with Mr. Samuel, the better we can be at helping him along :)

During the bronchoscopy, Samuel also got the newborn hearing screening. By the time Samuel was stable enough to do the test, he was old enough that he had to be sedated in order to complete it... newborns usually sleep right through it, which is what you want... toddlers, not so much :) But, sedating Samuel meant a potential step backwards with his breathing. With this risk in mind, we decided to wait until he would already be sedated to do the screening. This bronch was it!

The hearing screening showed some slight hearing loss, but could be a bit inconclusive. Samuel has had some major thick secretions lately, and the hearing loss was slight enough that the increased secretions/possible head cold could be the cause. So we will plan to repeat the hearing screening one more time at his next bronch. Fingers crossed!

We also visited the eye doctor, who's office is on the first floor of the Children's hospital - perfect! Samuel's last visit to the eye doctor was in August, 2010, so we were particularly excited to visit again. In August the doc confirmed that Samuel's strabimus was still there, but that the nystagmus was still gone, which had been the news he gave us in May, 2010. In other words, his eyes no longer shake or go cross eyed, but they do still point out (the opposite of cross eyed) and go what I call "googlie eyed" from time to time. Samuel still has the strabismus, and now also a little bit of amblyopia. Amblyopia is basically when one eye is weaker than the other... kind of like a "lazy eye". It's not terrible, but his left is weaker than his right. The good news is that it can be corrected if treated in early childhood!

So, we started patching :) I can't lie, it's absolutely adorable. Poor kid. DB asked if it was really necessary - he was feeling bad for all Samuel has been through... my answer was better now than when he's 10 years old and fighting us. Ha ha! Since his left eye is weaker than his right, Samuel wears a patch on his right eye for two hours per day. He doesn't mind it at all... such a good sport.

The doc also dilated Samuel's eyes and did a vision check - this was a first, and I was a bit nervous. Check it out - Samuel doesn't need glasses! This is absolutely incredible! Due to the high levels of oxygen Samuel needed, and for such prolonged periods of time, no one would be surprised if Samuel was nearly, or maybe all the way, blind. Oxygen at such high levels just kills your vision. But, our little man seems to be okay :) YEA!

Either Samuel really took it to heart when we told him he was a rockstar... or he just got his eyes dilated :) Can I tell you that every person we passed smiled at his cuteness when we walked down the hall with these glasses on?! Love it!

The great news is that Samuel could care less about his patched eye :) Plus, we got all sorts of fun patches... the yellow one shown here matches the straps and lightening bolts on his AFO's, but there are also stars, soccer balls, flames, etc.

Back on the home front...


... love...

... to...

... PAINT!

Olivia making sure her new dog friend gets lots of pats :)

Nothing better than a good reading of Trashy Town!
All three babies LOVE this book, I would highly recommend it... thank you, Cher :)


Everyone loves a ride on the tractor!
In fact, I'm pretty sure that mowing the lawn isn't exactly a chore anymore :)

Friday, February 25, 2011


Samuel and BB got to spend nearly three days at MUSC - this past Monday, Tuesday, and Wednesday. No worries though, all is GREAT! We were there for a surgery, some tests, and lots of observation... when you spend that much time in the hospital, you get lots of info and feedback, which is nice. I'm pretty sure folks thought I was crazy when they first saw me walking through the halls, I was on cloud 9 even though Samuel was an inpatient. But once I explained the circumstances, it was smiles all around!

The first appointment was a bronchoscopy on Monday morning. A bronch is a chance to check out the airway, among other things. We were lucky to have the first appointment, which meant we had to leave home at 4:30am, but that was the only horrible news all day :) Plus, Brooke was there for the weekend so no one else had to wake up at 4:30 to come watch George and Olivia. And wouldn't you know it, my little girl who is nervous of anyone new, and I mean anyone, thought Brooke was the coolest big kid she had ever met! So waking up Monday morning without mama or daddy was okay. Whew.

Back to Samuel... the bronch went really well! Things we discovered:

- Dr. D did a surgical procedure to remove some granulation tissue - kind of like scar tissue - inside Samuel's neck. It forms around the stoma (hole in his neck) on the inside. We knew there would be some, but our assumptions were correct in that there wasn't a lot. The doctor removed what he could, and will remove the rest next time because it was a bit too fibrous and thick.

- Dr. D also downsized the trache again! From 4.0 to 3.5 last month (click here), and from 3.5 to 3.0 this time. Um, 3.0 is the smallest trache there is! Crazy part is that our backup trache, which is supposed to be one size smaller than what's in his neck currently, is now a little ET tube... which isn't even an actual trache, just a skinny little tube!

- Samuel's vocal chords look okay. In June 2009, both vocal chords were unresponsive, and this time only the left one was unresponsive. I think there's a more technical word than unresponsive, but that's the way my brain comprehends it :) If vocal chords are unresponsive it can cause issues with eating, swallowing and speaking, but not breathing... it's amazing what you're thankful for :) The good news is that the test is a bit inconclusive because vocal chords can be unresponsive due to sedation, and actually be fine when Samuel's awake. So in a few weeks the doc is going to sneak a flexible scope down there to check them out while Samuel's awake. Agh! But, then we'll know for sure! The other good news is that if there is damage, it might not be too bad... our ENT heard him talk, which can sound really raspy when there is damage, and thought he sounded great. There could be come compensation going on, but our fingers are crossed that both chords are fine!

Due to a great bronch, we stayed in the hospital until Wednesday to be observed while Samuel's trache was CAPPED!!! That is exactly what it sounds like... there was a cap put on the end of Samuel's trache :) It makes him breathe out AND IN through his mouth and nose! With the passy muir (speaking valve), he could still breathe in through his neck/stoma. CRAZY! This is the first time since June 2009 that Samuel has had to breathe in through is mouth and nose! He did need a bit of extra oxygen on Monday afternoon, which came through a nasal cannula and not the trache, but since then hasn't needed any extra o's.

I know I've said this before, but wow... writing this stuff down makes it so real. YEA!!! Our guy is making HUGE progress!!!

Our new everyday schedule is trache collar, which provides extra oxygen and humidity, during nap and at night, and capped any time he is not in bed. Samuel is capped an average of 10 hours per day! And an early CO2 test showed numbers lower than they have been, possibly ever.

I have absolutely no idea how to end this post. I have no idea how to express what we're feeling! We are overjoyed, we are hopeful, and we are incredibly thankful :) Those words feel so inadequate...

Seriously?! You woke me up early to come here?
Wait a second, those ceiling tiles look vaguely familiar...
(Pre-surgery, wearing his passy muir.)

The happiest post-op boy you ever did see :)
(Wearing his HME and extra oxygen.)

Since we were there for the next few days mainly to be observed, we got permission to go outside for a bit - yea! We sat on a sheet in the courtyard/horseshoe outside the children's hospital mostly, but did take a walk to see the water :) Of course, going outside meant bringing along anything we might need in case of an emergency... suction, sat monitor hooked up at all times, nasal cannula, oxygen, ambu bag, extra trache's etc. BB got quite the workout!

Close up and capped :)
You can't even see the little white cap on his trache under all those smiley chins!

Saturday, February 19, 2011

See Ya Later... VENT!

Yes, really, oh my goodness, the ventilator has left the building! Our home medical company came to pick it up yesterday and I almost fell out of my chair. Well, actually I shed a few tears, laughed out loud, smiled from ear to ear, and had serious butterflies in my stomach :) The crazy part is that the butterflies were both the happy and nervous type, it was some kind of party!

IT'S GONE! It really is hard to believe. Even though Samuel has not needed the ventilator every day of his life, it has never been more than 10 yards from him... ever in his entire life. Even though he hasn't used it at home since December 9th, it has still been here, just in case. We have reached a new level of wellness! And, quite honestly, we are so well that if we need a ventilator at this point, we would need to be in the hospital because something has gone terribly wrong... we're not headed there, but that's how far we have come :)

What does this mean? Besides a heck of a lot of empty space in Samuel's room :) It means Samuel's lungs are healing! He still has a trache, and is connected to oxygen through his HME (heat/moisture exchange) for about an hour a day, wears his passy muir speaking value with no extra oxygen about nine hours a day, and is on extra oxygen and the trache collar during his nap time and at night.

It's hard to explain why there was nervousness with the vent leaving. I guess the simplest way to put it is that even though we haven't used it, and I realize if we did need to use it we would also be calling 9-1-1... I had it as backup. I know, I know, it's exciting we don't need that kind of backup anymore! But it's a very strange feeling not to have it. We're moving forward, which is excellent, but we're also moving into a new territory both for Samuel and DB and me. We know how to take care of our vent baby... and our HME baby... and now our passy muir baby... and with every new step comes more freedom for Samuel to be a normal baby, and more opportunities for us to focus on being parents rather than nurses. With every new step also comes those nervous butterflies that say please, God, help me do this right. He has been pretty darn miraculous so far, so I have no doubt He will help us with the next steps, too :)

Farewell old friend!
Samuel and mama saying goodbye.

The vent, the vent accessories, and the ventless boy :)
(Water bags, heater chambers, power cords, backup batteries, tubing, inline heaters, etc.)

Where there's a celebration, there are always three babies!

Saturday, February 5, 2011

Check out our new movie :)

David and I have taken on a big challenge this spring… our family of five is the Ambassador Family for the 2011 Beaufort March of Dimes! During the last two years, our eyes have been opened to a world we knew nothing about. We became parents :) There is nothing like it. Being a mom, or dad, is indescribably joyous! Our eyes were also opened to the world of premature babies. Again, there is nothing like it. You can watch part of our story by clicking here:

As you know, our family has had our share of hurdles (and miracles!). The March of Dimes does many things for babies, just a piece of that is research about the causes of premature births and treatment for babies who are born too early. This research, just one piece of that being medical advances for premature lungs, is one of the main reasons our babies, Olivia, George, and Samuel are still with us... and doing so well :) In fact, mild forms of BPD, Samuel's lung disease, is now extremely rare because of medical advances in just the last 5-10 years. Of course our hope is that in the next 5-10 years the research will improve enough to wipe out the severe cases of BPD too :)

As you might imagine, this is more than a fundraiser for us. This is a chance to give back to the organization that made a difference in our lives, specifically the lives of our three children born between 1 lb 9 oz and 2 lb 12 oz. We truly hope you will consider one or more of the following:

  • Make a donation! (Click on the link on the right side of this page.)
  • Join us to walk! We want a crowd there on April 16th showing Beaufort's support for babies. Regardless of what you're able to give, please come and march with us. (Let me know you’re coming!)
  • Join us on our team, The Early Birds, in raising money for babies! (From the link above, you can also Join Our Team and create your own personal fundraising page.)
  • Forward our youtube and fundraising page to others :)

Every day, thousands of babies are born too soon, too small and often very sick. We are walking in March for Babies because we want to do something about this. The money we raise will go directly to programs and research... $.93 of every dollar to be exact. It will also help to decrease the chances another baby will have to be in the hospital for 14 months, away from his family, like Samuel. Please join us.

Thank you for the support you have already shown our family! The loving thoughts, prayers, and words from our family, our friends, and our community lifted us up during some very down times. Olivia, George, and Samuel are more special than I ever could have imagined. We absolutely love being parents.

Together... at HOME!