Sunday, February 28, 2010

On the road again...

Today was not a fun day. After a very rough morning, Samuel was airlifted back to Charleston on a helicopter. He will be okay, but our hearts are hurting. Samuel isn't sleeping in the next room tonight and the hum of the oxygen concentrator has temporarily gone silent. We miss him.

Yesterday, Samuel started to look a little puffy. I don't know what the medical term would be, but that's what I call it... his little face just starts to puff up a little at a time. It wasn't bad, but worried me a bit because right before his last event he was really puffy (at their birthday party). It's been a busy couple days, so he went to bed early... we hoped that might help. At about 3am I woke up for a routine diaper change and suction - he had lots of secretions and the puffiness seemed to be getting worse. I started to get that feeling that something just wasn't right.

Around 7am we made a 911 call - Samuel started coughing, turning colors, couldn't get his breath, and required bagging. Bagging is when you use the ambu-bag, which is connected to an oxygen tank, to manually give him supported breaths through the trache... kind of like CPR but without the chest compressions. It's a bad sign if you have to be bagged. He seemed to pop back after being bagged - still puffy but color was good, breathing slowed to a more normal pace, the sweating stopped. Good stuff! We decided not to go to the ER. Around 8am we called 911 again - once again we bagged, but this time it didn't seem to work as well... plus, being bagged twice is definitely a bad sign. This time we went to the ER, where we stabilized and waited for transport to Charleston. It took a long time to get him comfortable, and that was with a few additional meds, so the decision to airlift was made. The team from Charleston was there in no time with hello's for Samuel - he has made entirely too many friends while in the ICU's :) (Thank you so much to all of the EMS, Fire Dept, and Hospital teams who helped us today, too!)

We made it 48 hours... we had almost a week at home. We are so grateful for that! But now I think it might be even harder not having him home. Before, we had a room ready and waiting for him... but now, it's his room, and it's empty.

They are doing lots of test to try and figure out what happened... some will come back in 48 hours, some not for 7 days. I think we're looking at 1-3 weeks back in the PICU, but that's just a guess, I have no idea.

Once again, our hopes are high! Now we know what we're missing... we can't wait for Samuel to come home again :)

Saturday, February 27, 2010

It's Always Better When We're Together!

Not sure Jack Johnson used an exclamation point, but it works for me :)

It's been a crazy, sleepless, busy, steep-learning-curve, kind of week... and it's so much better than any of the 55+ weeks before it! Plus, we have had wonderful help from friends and family. Many hands make our load lighter. Thank you!

Since getting home on Tuesday, I feel like we have been in a whirlwind... and a dream. I thought it would hit us on Wednesday morning that Samuel is actually here with us, but I was wrong. Just about every hour we look at him in amazement, and ask ourselves if this is real. Then I realize I haven't left the house or talked on the phone in four days - it is real! No drives to Charleston and no calls to the hospital... it still feels un-natural not to call in first thing in the morning and last thing at night. I don't have to ask anyone how my boy is doing! I can walk in and see him any time I want to!

Even with our daily visits, we have seen Samuel more in the last four days than in the last month. We are learning so much. I knew he was a sweet boy, but had no clue his sugar content was so high :) ha ha! Not sure if I'm actually funny, or slap happy, but it's funny to me!

The whirlwind has been incredible! Giving meds, responding to ventilator alarms, getting used to the constant hum of the oxygen concentrator, trying to care for all three babies needs for the basic food, love, and sleep... not sure where the days have gone. Night #1 was 30-45 minutes of sleep at a time, nights #2 and #3 we got about two 2-hour snoozes, but by night #4 we were down to almost normal sleep with 1-2 times of getting up for diaper changes, suction, etc.

Have I mentioned that I absolutely love having Samuel home!! While I am typing, he is sleeping in the next room - just awesome.

Next steps - first, make it two weeks without being readmitted to the hospital. Statistically, we should end up back in the ICU within two weeks... actually, the odds were that we would have gone back in the first 48 hours - but we didn't, yea! Samuel still has his PIC line in (kind of like a more permanent IV - that travels a lot further through the body), just in case. There are some down sides to this, but the up side is that if we need it, it's there. If he did have an event, it would be very hard to gain access, which we would need quickly... I figure, if you have it, you won't need it :) Kind of like insurance... or bringing an umbrella to a picnic.

Second, we have at least 8 follow up appointments in the next month or so... everyone from pulmonology, cardiology, neurology, opthalmology, ENT, high risk clinics, to our local pediatrician. Pretty sure I forgot an 'ology, but you get the point :) Some of these appointments are standard follow up, and some are to help us adjust things like meds and vent settings to be sure we are giving Samuel the best care from home. All but our local pediatrician are back in Charleston.

Long term, we will come off of the ventilator and get rid of the g-tube. These could take a while, but you never know ;) In general, I think the average for a kiddo like Samuel is another 1-3 years on the ventilator. I'm not sure there are averages for the g-tube, but if I had to guess I would say another 1-2 years. He has never eaten with his mouth, which is a strange concept for most of us, but this takes a while to learn. Great news for us, Samuel's oral aversion is not as bad as it should be! (Most babies who are intubated as long as he was have very strong oral aversions, partially due to having so many tubes down their throat for so long and also because they never got the chance to learn - when they get food or liquid in their mouths they don't know what to do with it so they choke. ugh) Hopefully our guy will start to enjoy more and more food soon... which means I should actually WAIT to learn to cook, right? I don't think it will do him any good to smell burnt, most likely non-edible, food :) No excuses, I actually have started trying to cook... very slowly, but surely.

Our guy is home! And so happy...

The morning he left, Samuel had a few visitors :) Such a social baby boy!

I'm pretty sure he is going to miss his friends :)

At the hospital, residents do 3-week rotations throughout the entire hospital... so it's rare that you would have a resident more than once. I'm pretty sure we've met almost all of them at this point :) But Samuel has been taken care of by this particular resident THREE times! Great story - he swore he would be the one to discharge Samuel... in January he discharged him, but only from the NICU to the PICU :) This time he got to send him home!

Samuel did a great job on the ride home! I had to sit up front, but could see his sats the entire time, and he was nice and relaxed. Here we are unloading in the driveway - so many happy tears. (We have heard stories of babies making it half way home and having to turn around and head back to the hospital... making it home felt so good!)

So much to do at home!

Everyone loves a good book!

There are green beans at home too! This was one of my favorites in the hospital.

Nothing better than a nice bath :)

Lots of places to chill and take it all in...


Omi introduced me to one of my dogs - Scout!

Hangin' with dad.

R2D2 followed me home :)

Lots of laughing makes mom and dad even happier!

Hi Rachel!


Wow - this 'ocean' is amazing!

What a big couple of days :)

George and Olivia had fun too...

With new friends...

... and crawling towards Samuel's fan :)

Tuesday, February 23, 2010


Samuel is home! The Byrne babies are together! We have our family under the same roof! There is no possible way for me to put today into words... here's my best shot :)

At about 11:30 this afternoon the ambulance pulled into our driveway... the hours before that were spent with a knot in my throat, tears of hope and optimism, and hands that wouldn't stop shaking. THIS is the best day!

I am at a total loss for words. Samuel is home! It's completely wonderful, joyous, and surreal :) Not sure when it will really hit us that he is here... I know that sounds crazy, but it feels like we have been waiting for so long... and now our wait is over, he is here! Maybe in the morning when we wake up and have ALL THREE of our babies with us it will begin to sink in. Wow.

This post doesn't do our day justice... I'll blame in on the whirlwind of emotions and lack of sleep :) Off to finish up Samuel's nightly routine and treatments, and to try and get some sleep. Not sure what the night or the next few days will hold, but not sure it matters... sleep or no sleep, events or no events, our family is together tonight. Our joy consumes us!

Pictures soon - I promise. In the meantime, to give you a visual - I don't think Samuel has stopped smiling. That little grin was a mile wide today... almost as big as his mom and dad's smiles :)

Monday, February 22, 2010

Magical #392?

Tomorrow is Day of Life 392... and tomorrow, Samuel might come home!

There, I said it. This is the closest we have ever come to one of our Come Home dates. Awesome, and completely surreal. Not sure I care to count the number of times I've gotten teary today... hope, joy, anticipation, worried, nervous, happy... you name it, I've felt it. But mostly, we are so excited!!!! I haven't been able to sit still... some of my to-do list is rational, some is not :) There are so many thoughts running through my head that I'm having a hard time putting together a coherent post!

If all goes well between now and then, we will be leaving the hospital tomorrow in our chariot (an ambulance) to head home. Agh!!!

There's no way to put our gratitude for all of the nurses, doc, RT's, residents, etc., into words... I'll have to save that for another time. They mean the world to us! Like I said, teary too many times today.

Our hopes are high!

A few more more fun pics of our Room In weekend...

I love my bear!

Well hi! Samuel likes to wriggle himself right down into the middle of his boppee.

Lookin' cute :)

We will definitely miss the Atrium! Instruments and dinosaurs are two of our favorites!

Dinosaur invasion!

Look dad, I can do it too!

Sunday, February 21, 2010

Roomed In

We are officially Roomed In! DB and I got to spend the weekend with Samuel... it was wonderful, surreal, and to be honest, a bit overwhelming at first. George and Olivia got to spend the weekend with Omi, which of course they loved! And it was wonderful for us to be able to focus completely on Samuel and know that G and O were in great hands :)

We loved spending time with our guy! When the babies were born we were able to live in Charleston at the Ronald McDonald House and see each of them every day... the way it should be, parents with their babies :) Since bringing G and O home, we've had to switch off nights so someone can visit with Samuel and someone can be home to care for George and Olivia. And of course we have work, coaching, dogs, and other real world stuff that has to be tended to. There have been occasions here and there that required one of us to stay a whole day, or even over night with Samuel, but it was usually because something bad had happened. This time we go to spend the weekend with him for something GOOD!

During the Room In, DB and I spent 48 hours with Samuel. Yep, that means we actually slept in his room, in the ICU, two nights. We are just full of energy today ;) During those two days and two nights, we were able to either do, or take part in, all of his care. The intent of Rooming In is to learn how to take care of, and read, our baby... I'm pretty sure it's required if you are taking a baby home with equipment. We are there quite a bit, so already have taken part in and seen a lot, but we have never been the primary care givers. If Samuel had an issue, we were generally supposed to step back and let the nurses, docs, or RT's handle it. But, if Samuel is going to come home soon, we've got to learn it all! Rooming In was like jumping right in. We did his meds, trache care, g-tube care, trache change, bath (complicated by the g-tube and trache), suctioning, field trips, responded to the monitors and alarms... you name it. We also met with the pharmacist, pulmonologist, and of course attending physician, residents, nurses, and RTs. We learned a lot! I can't even begin to make enough lists and charts :)

The overwhelming parts are, and will continue, getting smaller and smaller. Between the 1st and 2nd nights we were there, I was amazed how much our anxiety decreased. I'm going to go out on a limb and say that we are comfortable with his day-to-day care! As comfortable as you can be without ever caring for him outside a hospital setting. But the thought of an event/episode/attack/whatever you want to call it... is still quite concerning. We've rehearsed scenarios, completed regular CPR and trache CPR, practiced rescue breathing and meds, but it's still very overwhelming to think about something happening at home. Our local EMS will be alerted when Samuel comes home, which is also comforting.

All of that said - it is completely surreal that Samuel may come home soon! Yes, soon! Maybe even this week. Can't believe I just put that in writing... I said I wouldn't... but I'm just too excited! I'm so hopeful that our baby might be home with us soon! We've been here before, but we've never been THIS close. I'm still not willing to write down the day... not sure why, but I just can't do it. Too funny, at the hospital we don't mention the day around Samuel... don't want him to feel the need to attract more attention by acting up :)

Here are some great photos from our weekend, including Samuel's first trip outside! Our boy felt the sunshine! Our hopes are high.

Who decided it was okay to put me in this little pink tub?
Great way to start our stay - dialogue:
"You think it's okay to get this feeding tube thing wet?"
"Not sure, let's just be careful..."
Luckily it was okay :)

Sacked out for the night... pretty sure he's comfortable :)

DB's new buddy - trache baby! He helped us learn trache CPR :)

Mom, why am I dressed in all these clothes? What does "outside" mean?

I don't know what this magical "outside" place is, but let's get movin' folks!

Wow - this is outside?!

I love it, dad! Thank you for bringing me here! R2D2 seems to like it too :)

Wait, let me check it out... smells good, looks good... and tastes good too :)

Yep, I love the sunshine!

Samuel finally got to feel the sunshine and see the birds and the trees! We have a drawing by his bed that some friends made, it was of trees and birds so that Samuel would know what they looked like when the time came. He definitely knew! Thank you :)

Dad tells the best stories!

Thursday, February 18, 2010

More Musical Talent

We have another piano player! George has had the best time with this.

Look at him go!

Any requests?

Tickling these ivories :)

Not only do I play piano - I sing too! La la la!

Wednesday, February 17, 2010

Movin' on up

Olivia has been pulling herself up to stand. She does this next to the couch, the fireplace, the footstool, me, dad, you name it - if she can reach it, she wants to pull up and stand. But today was a first... when we went in with our good morning hello, she pulled up and stood in her crib! Agh! It was so cute!!!

We've also got George going full speed ahead :) He's not interested in pulling his belly off the floor to crawl yet, but he has perfected the commando crawl. In fact, he has a high gear, speedy commando crawl that is just about the cutest thing I've ever seen. Olivia still flies right by him, but he certainly gets style points.

And Samuel is moving right along too! Not crawling yet, that might take a while, but in regards to his respiratory status. Not putting any details in writing yet, but we are four days away from three weeks without an event. YEA!

Sad - I have absolutely no pictures of the things I mentioned above... I've been a little slack with the camera. So, these are just some really cute ones :)

Beautiful even when she's serious :)

Samuel loves to smile until the camera comes out... then it's mostly just sticking out his tongue!

Dad and George - two peas in a pod.


Best buds... I didn't even have to pose this one, they've been playing like this a lot lately.

High five!

Cutie with a mohawk.

Some things haven't changed... have toys, will travel. Also quite funny, this is Olivia's can-I-play-with-this face accompanied by the one-finger touch. This is also the general reaction around electrical outlets and the oxygen tanks :)

Monday, February 15, 2010

Feelin' the love

Happy Valentine's Day! Hard to believe, but this was Samuel's second Valentine's Day in the hospital... makes it even more real that it's been a year. Last Valentine's Day we made big cards for each of the babies that hung on their IV poles... this year we had a big Valentine's Day breakfast with George and Olivia and took Samuel a few of his favorite treats - suckers and mylar balloons :) We certainly have come a long way!

Loving one of the balloons :) It's hysterical, you literally have to take the balloons away for Samuel to take a nap.

Looking studly, as usual, in his Valentine's Day hat :) Thank you Meghan!

Best story behind this bear! From the NICU days, only grandparents were allowed to visit unaccompanied by the parents. Since BB's parents are so far away, we were allowed to have one fill-in 'grandparent' who would visit Samuel on a regular basis. That's a big commitment to ask someone to make! First it was Sarah, who was awesome and read Shakespeare but had to stop coming when she got to about 39+ weeks pregnant... then it was Amanda, who was incredible and made sure Samuel was not fooled by the Brown Bear myth but had to stop coming when she went back to school in New York... then we weren't sure what to do. Until Amanda's mom, Maryann, expressed interest. It was so amazing - I had only met Maryann a handful of times, and she was excited to make a commitment to visit Samuel. We must be the luckiest family to have three such wonderful women visiting our guy! Back to the bear... Maryann teaches, and her students know about Samuel. She got in to work one day last week, and a few girls were excited to tell her about the gifts they made for children in the hospital... and that they made a special one just for Samuel! Yep, the bear :) What a small world! We are so blessed to be surrounded by such love and joy. Thank you Girl Scouts for caring about other kiddos... especially our Samuel!