Third Time's a Charm

We are on track to bring Samuel home on Monday! YEA! Only six days after being re-admitted... last time it was almost three weeks. Six days is much better :)

Monday will be a busy day... we have High Risk Clinic (this is a follow-up clinic at MUSC due to their prematurity, it's really great) with George and Olivia at 12:30, then a family care conference with Samuel's team around 2:30, and then we bring all three babies home. Wow! We will need two cars and at least three adults because Samuel has a lot of gear, but it's totally do-able :)

A few catch-up photos...

Samuel's first car ride! This was when we brought him home last Friday. He was so good!

You would never know these are all hospital photos because Samuel is such a happy boy :)

His new favorite book... Eating the Alphabet. Too bad mom can't pronounce Xigua!

This is the "I'm a little worn out from sitting up" pose... that's right, Samuel is starting to sit up on his own :)

Loving my musical book and the flashing lights!

Nothing wrong with the good old favorite rattle.

Love this! Samuel has started sucking water out of a syringe! I know that sounds odd, but this is so great for him! He is making more and more strides towards eating and drinking every day :)

Can't forget Olivia and George...

Brotherly Love

When Samuel was home last weekend, he and George had a few moments that melted our hearts. We can't wait until they can tackle each other the way brothers should... but for now, we get excited about the little moments :) This is one that we caught on film...

George: Hey Samuel, whatcha doin'...
Samuel: Hey George, I'm just chillin'...

George: This is a pretty cool toy, let me show you what it does..

Samuel: Thanks George, you're pretty cool.

George: Hey mom, I like playing with my brother! Thanks for bringing him home!

Shiner

What an eventful week! Including, our very first shiner :) Olivia is always on the move... this time she got a little ahead of herself and met the hinge on the door with a bit too much force. Throughout the past year we have learned a ton of medical stuff... but I was at total loss for a cut! Luckily, no stitches necessary.

Same day as the incident... notice that nice left eye... my self-soother :)

The next day... back to normal!
DB likes to brag about his rough and tumble daughter... who loves to wear bows :)

More fun around the house...

I guess George didn't get the memo from Olivia that doors can be dangerous!

George in his sweet, southern boy outfit :) Love it!

Don't worry DB, even though George looks great in his pleated outfit, he can still palm a basketball :)

Olivia playing peek-a-boo with Lambchop...

... and their special game "ouchie, ouchie, ouchie," with dad. Not sure this will be very funny when something is actually ouchie :)

The couple days Samuel was home last weekend were awesome!

Lots of smiles and playtime :)

And dancing! This photo doesn't do the moment justice... Samuel was rocking back and forth so hard he almost knocked his seat over! We can't wait for him to be home again.

On the road again... again...

Yes, really... we re-admitted Samuel to the PICU again on Tuesday evening. I think I'm reaching a new level of disbelief. I really can't believe this is our life... I had no idea you could be in the ICU this long. I know that sounds naive, and maybe it's more that I never thought in a million years our child would be in the hospital this long, but I always thought of it as; you get sick, you see a doctor, you get a treatment plan, you get better. Man, did I have it wrong.

Anyway, off the soap box and on to the more important things :)

On Tuesday we (the nurse I mentioned and I) took Samuel to Charleston for a routine, follow-up pulmonology appointment. Besides not being happy about the 7am departure time, Samuel was wonderful! At the appointment he was a complete ham. Every time a nurse, NP, or doctor came in he was a total show-off... smiling and dancing. This is exactly how he was at home - when he was awake. That was the alarming part - he slept a lot during the four days he was home, but he was so happy and playful whenever he was awake that everyone thought things were going okay. In fact, he looked so good that the docs were fine sending us to get lab work and then home - they would call us with the results. We tested basic electrolytes and his CO2 and bicarb levels. Because of all his sleeping, I was worried about the CO2 and bi-carb, and also because those were both high the last time we was re-admitted. But again, he seemed so happy that with each smile our worries were less.

We were about 15 minutes from home (it's a good 2-hour trip when you factor in loading and unloading Samuel's gear) when the NP called us... Samuel's electrolytes were fine, but his bi-carb was up and his CO2 was really high. He looked comfortable, so no ER or ambulance, but we were instructed to bring him back and re-admit him right away. Ugh. Tears. Disbelief. Heavy heart.

I dropped off the nurse and picked up DB and we were back to Charleston. When we got there, Samuel was once again an absolute ham! We joked about our "sick" baby because he had to be the happiest patient in the ICU... it's not really that funny, but sometimes you have to find some humor. We answered questions, got him settled, and tucked him in for the night. It killed us to leave him there.

The big question is why his CO2 keeps rising... which is very bad. (He's not having a problem getting oxygen, but he's having a problem getting rid of CO2, which is what we all exhale.) There is also no way for me to measure his CO2 at home, and even if I could, there is nothing we could do about it except take him back to the hospital. There are a few thoughts and theories, but no one is really sure what is going on. Right now we are observing and they are making a few minor tweaks to vent settings and his trach. I was hoping this would be a really short stay, but his CO2 is still elevated and I have no idea how long it will take to not only fix this problem, but also to get a plan in place so that it doesn't keep happening.

There are a few bright sides :) When I got home that night I opened up a 1-minute prayer book, and while I realize it's pretty sad that I only had time for a 1-minute prayer, talk about a nice kick in the pants! It was exactly what I needed! Basically, it was about recognizing all of the perfect provisions God has given instead of just the things that don't go my way, turning my "whining into rejoicing", and focusing on the positive. SO... today, even though Samuel's CO2 was sky-high, he did not have a major event. We were able to get to the hospital safely and calmly, and without needing emergency services. Our wonderful nurse was with me and was the calm that I needed. DB has a good friend and fellow soccer coach who was able to cover practice last minute so that he drive to Charleston... good thing because he has the super-human ability to cut through traffic like a hot knife through butter. Our good RT friend happened to be visiting that day and was at the house when we pulled in to pick up additional supplies and switch drivers... he followed us all the way back to Charleston, which was a huge sense of comfort, and helped us cart Samuel up to the PICU! Samuel was not in pain, but rather happy and smiling! We miss our baby each minute he is not home, but these things considered, there are reasons to be thankful :)

The Way It Should Be

Our family is together again! YEA! What a sweet, sweet feeling to have all of your babies under the same roof. I think I almost forgot what that felt like... I love it!

Samuel came home on Friday afternoon and we have had a wonderful few days. I also think I forgot how happy he was the last time he was home - his smiles are huge :) We are back on the learning curve, giving meds, troubleshooting the ventilator and feeding pump, mixing Samuel's cocktails, suctioning, etc. It is so wonderful to take care of him! Makes me feel like his mama - there's nothing better than that.

One great piece of news - we met our primary home nurse, and she has trach experience! This is a huge prayer answered. Especially after the last couple weeks, I was terrified to even think about leaving him when I have to go to work. With Samuel, knowing how to do an emergency trach change is part of the package. So embarrassing, but when I found out she would be full-time I actually choked up and shed a few tears... in front of her! We are still looking for a few backup nurses with trach experience in case she has to miss a day, so if you know anyone interested...

Pictures to come... we are doing really well... but not getting much sleep yet :) Off to try and remedy that.

Homecoming!

Tomorrow morning we are bringing Samuel home again! Of course, that is considering all goes well tonight, but our hopes are through the roof :)

There was talk of a family meeting, during which we would make a plan for Samuel to come home... but he has done so well this week that the meeting is not necessary anymore! There are certain things he must be able to do, for example 4-hours on the trach collar and tolerating bolus feeds, but he has been a rock star this week and is ready to come home. (Refresher - trach collar is when he comes off the ventilator and receives just a steady, light flow of oxygen. Regarding the feeds, he has been on continuous feeds, which he will stay on over night, but during the day we compress his feeds, and feed him every three hours for an hour, so he doesn't have to be hooked up to his feeding pump all day.)

I'm not sure why, but this time feels more surreal than last time. It was such a big ordeal to get in the training and dot our i's and cross our t's last time... and this time it feels like we're forgetting to do something :) We already have 5 days of home experience under our belts, and certainly feel ready... I guess we're just missing the chaos and uncertainty of the first time. ha ha! I don't mind not having those :)

We do still have that same smile-a-mile-wide feeling! Our hearts are so happy! And, I do still have that feeling of lots to do. For one, we really haven't been in Samuel's room since he went back to the hospital three weeks ago. It was just too hard. So today was cleaning, reorganizing, taking stock of supplies, etc, and it feels GREAT! Our baby is coming home!

Off to finish those things I "must" do before Samuel comes home, and to try to get some sleep... although I'm not sure how that's possible right now. I'm so excited! And, unfortunately, nervous... I've never wished so much for the phone NOT to ring. Please be a good baby tonight, Samuel... we want you to come home :)

Check it out - tomorrow we get to drive him home... in our own car! Agh! I love it!

Giving Back

We are Marching for Babies! Please consider supporting us in giving back to the March of Dimes, an organization that has changed our lives, by making a gift to help us reach our fundraising goal. Our link is on the left side of the blog, or you can go to www.marchforbabies.org/byrnebabies.

During the last year, 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!

As you know, our familiy has also had our share of hurdles. The March of Dimes focuses on medical advances for preemies through research, and support for families dealing with a premature birth or the loss of a child. The organization is also leading the way to prevent future premature births through education. Both research and education will help prevent any more babies from having to spend the first year of his life away from his family.

To make it personal - the research component of this organization has no doubt played a part in saving the lives of our three children and improving their future quality of life. To be even more specific, and in an effort to keep it short and sweet, they have played a huge role in the medical advances of caring for premature lungs. From the shots I received prior to their birth, to the use of surfactant, to new ventilator standards that protect premature lungs, our babies lungs have been aided every step of the way by research that gets better and better every day. In fact, mild 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 :)

Olivia, George, and Samuel are more special than I ever could have imagined. We absolutely love being parents.

Our three miracles :)

Baby Crack

No, this does not refer to baby bottoms :) It actually refers to a slight baby addiction from which George and Olivia are suffering. But don't worry, weaning then seems to be going well!

If you couldn't tell, I'm feeling the need to post a few light and fluffy updates and this one fits the bill. Warning, there will be more :)

I'll introduce "the table" slowly...

I know, seems pretty innocent... but wait, there is a second half to "the table"...

"The table" in all it's glory! I know it sounds crazy, but if this thing is out, all of the other toys are neglected. It plays really fun songs too (sense the sarcasm)... if you've been to our house I'm about to get a song stuck in your head :) You can choose - "Hello! The phone is ringing so I say Hello..." or "1, 2, 3... 4, 5, 6, 7, 8... then there's 9, counting's really great..." or "Busy, busy, busy, busy, there's so much to do..." Ha ha! I'm convinced one of those was the first song O & G danced to :)

We now bring the table out only 1-2 times a day... the other toys are much happier. Note that in this photo there are no other toys on the floor...

... later that day, still no other toys have been played with. Sad that even with such an addiction, George and Olivia seem so happy :)

Lynn, this table is awesome - we really do love the hours of entertaiment it has provided. Thank you!

Even though I feel like posting light-hearted stuff, our hearts are still sad that Samuel is back in the hospital. We hoped it would be a very short stay, but things continue to pop up. Since the mucus plug on Sunday that I wrote about, Samuel got a little sickness... not sure what it was, but in general his white blood count and heart rate were up and his bi-carb and labs were off. The docs are great and with different treatments we seem to be getting back on track again. Yea! We are hoping for a meeting next week about a discharge plan, which would be awesome! That doesn't mean he will come home next week, but we are hoping to put in place the criteria he will need to reach in order to consider coming home again. I like having plans, even if they are tentative... after all, as we have learned, Samuel is on his own schedule :)

Flicker the Window Licker

Olivia is our beautiful girl - who also happens to be hysterical! She is full of personality, spunk, and a love for life that is contagious... she makes us laugh every day. Olivia dances with one finger in the air, has rambunctious bursts, was the first to perfect the fake laugh, gives big slobbery kisses, shows all of her teeth when she smiles really big, and most of all she loves to laugh and play.

Needless to say, in general it's been a fairly frustrating month for our family dealing with the highs and lows of Samuel's lung disease. Luckily, we have comic relief at our fingertips :)

The name... we have joked about the Flicker part for a while. Olivia doesn't necessarily want to play with whatever you are offering her, but in an attempt to make you feel better she laughs and flicks whatever it is with her fingers. She can also play with every toy in the room in 5 minutes this way, which is very smart. Funnier in person then this lame paragraph :)

The second part... Olivia loves to look out the window. Lately, she has also added this component.

Another beautiful day outside...

... but wait, this glass looks kind of tasty...

... hi mom! What's so funny?

Meanwhile, dad was outside...

A little taste...

Uh oh, she caught us laughing... now she knows it's funny!

Our beautiful girl is back...

... actually, I'm pretty sure she's gearing up for more mischief.

Ew! Ha ha!

Higher and Lower

What a week! Since last Sunday, when Samuel flew back to Charleston, it feels like the highs are higher but the lows are lower. Now that we know what it's like to have him home, if it's possible we are even more excited for him to be here! But it also seems like the severity of the bad times are getting worse... not sure if that's just a result of being so excited to get him back home or if it's real. Regardless, I'm ready for the roller coaster to even out just a bit :)

By Sunday evening, Samuel looked exhausted, and a bit out of it - understandable for a kid who just had the day he had - but was smiley and wanting to play. And by Monday, he woke up a happy camper :) We thought, whew... just a blip, not a full BPD event, let's get him feeling lots better and home again fairly soon! It's a high, high!

Then came Tuesday and one of the worst BPD events he has had. I think I've described it before, but a severe BPD spell is kind of like the worst asthma attack you can imagine. I don't have asthma, but this is what I've been told... your work of breathing increases, you can't quite get your breath, you panic which makes it worse, your alveoli (air sacs in your lungs) begin to collapse. You then fight it so hard (or clamp down) that it's impossible to get a breath. Eventually your bodies response is to pass out so you will relax and can be given breaths. Fun, huh? I'm not sure it happens like that every time, but I hope it's a helpful explanation. What makes this one worse than some of the others was how quickly it happened, that it happened when he was sleeping peacefully, and that with his recovery he required compressions.... it was a low, low.

Again, by the next morning he was happy and smiling! Besides the trach, vent, g-tube, etc.... you would hardly know he was sick :) We know he's going to have these events, there's just no way to predict when or how severe they will be. He's feeling better so we monitor the next few days and all is well. Wednesday, Thursday, Friday, Saturday, Sunday - great days! A few moody moments, but it seems to be normal 1-year old stuff. Back to the high, high!

Then comes Sunday night, and a new scare. It sounds gross, but it's called a mucus plug, and it's exactly that. All of Samuel's air comes and goes through the trach (besides what he manages to sneak around it in order to sing :) ), which is kind of like a small, plastic tube. When you or I get a lot of mucus, we can cough it up, but when your airway is a small, plastic tube, it's not that easy. Small globs can pass through and that's what we suction out, but every once in a while he will get a big glob that is too large to pass through the trach. We haven't seen one like this before. In a moments notice it blocked his trach, and allowed no air to flow in or out of Samuel. I won't go into too many details, but it was terrifying. He doesn't have the reserves that you and I have... where we can hold our breaths, he can't be without air for very long before things get really scary. I can't say enough how lucky we are to have such a great medical team looking after our baby. Yep, another low, low.

Today, the reports were that Samuel is a happy baby again! A bit tired from his ordeal last night, but overall smiley and playful. Back to a high!

The initial plan is to restart the clock... Samuel will need to once again go 2-3 weeks without any events in order to come home. I say initial plan, because I think the medical team is going to meet and then schedule a conference with us. I feel like we are in such a weird place... in my non-medical opinion, it seems that 90% of the time Samuel is a happy little boy that could be home with his family, but the other 10% is so scary that he needs the immediate attention of the PICU. I'm excited to hear from the experts... I miss my baby.

Even though he's back in the hospital, Samuel is still a ham!

Fun with rings :)

At home we've had a pretty uneventful week...

in comparison...

but lots of fun, everyday baby stuff :)

Brushing those pearly whites! Thank you for looking out for our teeth Gary :)

Brunch! This was the first time George and Olivia sat in the highchairs at a restaurant (after being cloroxed of course - after too much time in the hospital, I'm becoming that mom)! They even ordered their own bowl of grits from the menu to share :)

Checkin' out the world...

Happy Birthday DB!

I've been trying to think of the perfect Happy Birthday post... it's been such a crazy year that I'm not sure where to begin. It's been the kind of year that changes you... luckily DB is still the friend that I can turn to any time and the dad that always knows how to make his family smile. I'll have to keep it short, otherwise I will be bragging on him all day :)

Happy Birthday DB! Put simply - I love you! You are my best friend, and I think you are amazing. What a year we will never forget! Here's to the next one, you deserve the best.

Thanks to the efforts of many, we went out to dinner to celebrate! Some friends met us out, and it was the kind of night where you laugh incredibly loud and often... I'm pretty sure we were "that" table. We had so much fun! What a great release. In two years we have gone from married with dogs to married with triplets and dogs - whew. It really hits you when annual dates like this come up... last year we celebrated DB's birthday in the hospital, and during all the time that has passed, Samuel is still there. But, last March 3rd, all of our babies were in the hospital - this year is much better :) Cheers to the next one!

One of many examples of 'dad fixation'... there's no distracting the babies to take a picture.

If dad's around, the kiddos are smiling!

This is a photo from last March... it happens to be stored in a place where I see it every time I open my memory stick, and I love it! I don't think I've posted it before... but it's the best example I have of how DB looks at his babies, and how they look back at him. It makes my heart happy :)