The Atrium

Another part of getting ready for Samuel to come home is learning to take care of him. Again, typical first time parent stuff... but the equipment takes a bit more training. Our big test will come the weekend before he comes home, when DB and I will spend an entire 48 hours - 2 days and 2 nights - taking care of him. It's a really great system called Rooming In. We will still stay with Samuel in the hospital, with nurses, docs, RT's, etc. right there if we have any questions, but we will be taking care of him on our own!

The goal is to know how to take care of him prior to Rooming In, so that even though you can ask questions, hopefully you don't have too many :) We are there daily for visits, but due to travel time, work schedules, and of course having two 1-year olds at home, we are generally only able to be there for an hour or two before Samuel goes to bed. We usually spend a lot of our visit doing normal parent/baby stuff... cuddling, playing, singing, and unfortunately can't be there during the day when he is getting treatments, therapies, etc. So, in preparation for Rooming In, we will each spend one or two 8-hour days learning to take care of Samuel - including meds, feeding tube, and of course respiratory. This means learning how to dot our i's and cross our t's, but also how to read him and if he's getting into trouble. Whew - no pressure :)

(Just to clarify, it will still be at least a few more weeks before we think about bringing him home... we just want to be ready when he is.)

On Friday I got to spend my first 8-hour day with Samuel. It was great! He was nice enough to have a few small de-sats just to test me, but nothing too serious :) I absolutely loved spending the day with my guy! When he was awake, I learned a lot of the hands-on, day-t0-day, care... and when he took his nap, we started to go over a checklist which included things like how to recognize respiratory distress and what to do in an emergency. We have talked about all of these things before, let's be honest - I'm big on the questions, but it was much harder to answer some of the q&a when under the pressure of possibly bringing him home soon.

Towards the end of the day, we were ready for another field trip. Samuel has been able to go on a few since the first one a few weeks ago... wow, can't believe it's been a few weeks since then! But this had to be one of the coolest (sorry Puffy)! We went to the Atrium!

The Atrium is run by Child Life, and it's a place where the kids who are in the hospital can go to play. It is amazing! You have to be healthy enough for the trip and not contagious, and Samuel is both, yea!

There were lots of great things about this past Friday, but the Atrium certainly was a highlight :)

Morning! I'm ready for a great day!

Sweet - I love road trips! Where are we going?

Oh.... my.... gosh! I don't know what it is, but I LOVE it!

Samuel could not take his eyes off of the giant kites hanging from the ceiling in the Atrium. His eyes lit up - and did not stop!

A room just for kids is awesome!

Taking Samuel on road trips definitely gets more comfortable every time we go, but we still have to lug around a few things :)

Samuel's mastery of Chopsticks after just a few minutes on the piano was incredible :)

And of course the drum solo was just as impressive :)

A little more floor time - and another chance to stare at the kites! Samuel was "running" like there was no tomorrow!

Look mom, another cute baby in the Atrium :)

Back at home, Olivia and Belle enjoyed the squirrels in our new back yard :)

Thank you for the ribbons Aunt Nancy! George, my fine motor boy, was having a blast.

The good, the bad, and the OMG

I'm still in disbelief that our babies are now a year, and a week, old. But, that's not what this post is about :)

I guess it's best to start with the bad... always good to end on a high note. Samuel is not coming home mid-February. I knew I shouldn't have said the come-home date out loud! Actually, we have decided not to tell Samuel when his next go home date is - apparently they bring on a bit too much excitement and he can't quite handle it :) In all seriousness, on Sunday, the day after the birthday party, Samuel had another event. As before, it was pretty serious, but also as before, with compressions and a few breaths, his sats (blood/oxygen saturation levels) and his heart rate came back up. So, we started our three weeks of being event-free over... again. I can't lie, I had myself a nice little pity party on Sunday morning, but then it was time for the to-do's to start, so on we went. I am sad... not as much because he isn't coming home (although every minute of every day I want him home), but because he's still not ready to come home. But, if the next few weeks go well, we could still be looking at late February or early March for coming home. Also as before, our hopes are high!

The good... Olivia and George had a great 1-year check up on Monday! They are doing really well! They are each a little behind the 1-year curve for physical development, but got a huge thumbs up neurologically and for growth! Not bad for babies born almost 3 months early :) (They are not at all behind any curve for 9-month olds.) It was a wonderful appointment!

The Oh My Goodness... bring us to life as we know it. It's about to change! Even though Samuel's not coming home this week, we are still taking some of the big last steps to bringing him home. For example, when he comes home our dogs will have to be outside most of the day (dog hair and traches don't go well together) and we realized we don't have a fence yet. So, that project is now at the top of the list. But that's not the OMG. On Tuesday, the home medical equipment company came to our house to train us on some of the equipment. By some, I mean all of the respiratory stuff... the g-tube/feeding stuff is still to come, but I hear it's fairly simple in comparison. Let me set the scene... we are all there and a little anxious but also excited to get started. A really nice woman knocks on the door and we exchange nice-to-meet-you's, then she asks David, and Rachel, and me, if we can help her get some things from her car (this leaves Omi with the babies, no worries :) ). Sure! We all go to get a load... looks do-able. During the 2+ hours of training, there are entirely too many trips made to get more stuff out of the car. Agh! The amout of stuff is crazy! I guess when you see it in the hospital it's somehow camouflaged, because seeing it at home is a bit overwhelming! The woman was absolutely wonderful at training us, but it didn't entirely take away the panic of reality crashing down.

When you, your child, your friend, or whoever is in the hospital, I think my general thought is that when they come home, they will be "better," or fixed, or whatever the word might be. In the last few weeks it's really hit me that when Samuel comes home, he will be better than he was, but he will not be "better." He is really sick. He is still very fragile. And I have a bit of anxiety about that. Again, I want nothing more than to have him home with me! I can't wait for that day! But I'm nervous about doing everything right. Same as any first-time parent I guess... Samuel just seems to come with a bit more hardware.


Neither the bad, the good, or the OMG compares to this...

Happy, happy, joy, joy! George can entertain himself as well as he entertains us :)

Not sure Scout is too interested in being entertained :)

Olivia, you are extra pretty close up... but I'm still not letting you play with the camera...

Not sure exactly what it is about this picture, but I love it!!! I'm guessing it's not the just-woke-up gaze, or the I'm-still-getting-more-teeth drool, or the unbuttoned onesie... must just be Her Cuteness. (No, she doesn't need a walker... it's just an OT toy to practice standing :) )

Samuel loves his green beans! This is especially great because of the intense oral aversions most kids have after being intubated for so long!

No dad, you won't fit into my lounge chair :)

Let me tell you all about it, mom!

Happy Birthday

What an incredible day! THIS was the best day... so far :)

A few weeks ago I mentioned to Samuel's nurse and the nurse manager that the big 1st birthday was just around the corner... and I was shocked by the response. Because Samuel was strong enough for fieldtrips, they threw out the idea of having the party in the hospital - WITH Samuel! All three babies together. I felt like I was floating.

When I realized Samuel wouldn't be home for his birthday, the idea of having a party without him weighed really heavy on my heart. Honestly, I wasn't quite sure how I would make it through that day... I hated that I wasn't over the moon about our babies first birthday. Then, this idea came. We immediately jumped at the idea and they booked the conference room down the hall from the PICU. Now I was over the moon about their party - they would get to be together! YEA!

Samuel, Olivia, and George have not been able to spend much time together. Due to infection/germ control (which we are extremely thankful for), Olivia and George are not allowed to visit Samuel. They have taken 3 pictures together... one before G and O left the hospital, one when we feared for S in July, and one for our Christmas picture. During each of these, interaction was minimal and the goal was in, take photo, out. This birthday was also a chance for them to catch a few minutes together!

The birthday party was incredible! With help from friends, we turned the conference room into a blue and pink fiesta! A few friends from Beaufort came (back to that infection/germ control), and we were shocked at how many of the docs, nurses, therapists, etc. were able to come. It was overwhelming to see how much people care for these babies... a parent couldn't ask for more. At one point during the party I realized I hadn't really looked anyone in the eye for a while... but I knew if I did, the waterworks would come and not stop. I also gave a very uncharacteristically short thank you speech... again, I knew if I spoke one more word, the joy and appreciation would have started bubbling out. I cry enough, I prefer not to do it in public if it can be avoided :) Plus, honestly, I knew that it I let that crack open, I wouldn't be able to stop. I'm not sure I've ever been so overwhelmed with thankfulness.

I still can't believe we have triplets... much less three 1-year olds :) The word "lucky" just doesn't seem to cut it!

Let the fun begin! And yes, you better believe I was determined those hats would be worn!

Dad and the birthday girl share some pre-cake sub sandwich... nice to see DB giving Olivia a chance and not eating the entire sub in one bite :)

I think George likes his birthday! That, or he's happy to see all of his hospital friends again :)

Welcome to my, I mean, our party!

Samuel makes his entrance!
This was a bit tricky, he wasn't having a great morning. Go figure, even though we planned a start time for the party, and even a time for cake, Samuel had his own timeline... the story of his life! I think he wanted to be sure everyone had time to arrive before the cake eating began. Samuel couldn't stay too long, but the time when all three babies were in the same room was incredible.

Cake!!!!!

George dug right in!

Samuel was way more interested in the people at the party :)

Olivia followed George's lead and made a mess!

Hey, I wasn't finished... where did my cake go? Oh well, I still have all of this frosting to play with!

Alright, I'll try some... yum!

What a cute mess!

Hi dad!

I just couldn't choose. Love these both... especially poor George, thank you for trying so hard to smile :)

Hi Samuel!

Mom almost didn't make it past this moment without tears... then we all got a good laugh as Olivia went for Samuel's trache :)

In line for seconds? Or, just scrape the icing off of dad and onto a plate. Ew!

Mom and her boys.

What? The party is over? No way! Come on favorite cousin...

We are NOT finished celebrating!

Then there's George, as usual you can tell when the party is over :) Thanks for the cuddle 'aunt' Brooke!

One Year!

What a year! A picture is worth a thousand words... (Just a reminder, these animals fit in the palm of my hand!)

Olivia and her octopus - 2 lb 12 oz

Olivia and her octopus - 21 lbs!

George and his crab - 2 lb 10 oz

George and his crab - 17 lb 8 oz!

Samuel and his turtle - 1 lb 9 oz

Samuel and his turtle - 17 lbs!

A thousand words don't cut it for this one... it just takes my breath away...

Samuel with dad's wedding ring, then...

... Samuel with dad's wedding ring, now!

What a difference a year makes!

Wednesday, January 27, 2010

A Good Week

Our family has had a really good week! It has also brought a roller coaster of emotions as we count down to tomorrow - the first birthday :)

George had a follow-up cardiology visit today, and he got a huge thumbs up! The PDA and ASD look great. They are very pleased with the devices! We will have another follow up in 6 months, at which time they will probably stop the daily aspirin, and another in 3 years just because he was so young when both procedures were performed. Good day!

Olivia is truckin' right along :) She is all over the place. I am sad to report that the mohawk is officially no more. We miss it! It has been replaced by more bows, but it's just not the same.

Samuel has had a great week! On Saturday I got a chance to chat with his pulmonologist, which I loved, and one of the big pieces of info was that they would like Samuel to be 'event free' for 3 weeks prior to going home. He had some pretty major events the last half of December and the first half of January, kind of like really terrible asthma attacks, but requiring lots of intervention and support from the nurses, docs, and RT's. I can't believe I'm about to put this in writing, but his last event was on January 16th... a week and a half ago. We are so scared to be excited, but no matter how many times our excitement of bringing Samuel home is crushed, we just can't help but let our hearts soar with every day that passes without an event. We have yet another potential come home date for mid-February... and again, we are hopeful :)

I was really worried about this week... I was worried that even though we have so much to celebrate, I wouldn't be able to be as joyful as every mom should be on their child's first birthday because Samuel isn't home. Turns out, thank God, joy had it's own plan! We have spent many moments this week reminiscing about this time last year... a year ago Saturday, my girls came for a baby shower... a year ago Monday, I called the doctor to say something didn't feel right... a year ago Tuesday, we got the news that Samuel needed to come and we decided to deliver early... a year ago we were so scared. Then tomorrow came, and we were overjoyed to meet our children! Yes, we were still scared, and we never could have imagined what the year would hold, but it didn't matter - our babies were here! And now they are about to turn a year old - praise God! I have never experienced such joy, or pain, as in the last year... but the joy wins :)

A few pictures from our week...

Olivia is on the move! And has figured out how to take her things with her :)

Who needs the toys, when you can play with the bucket?!

Just making sure no one takes my trache collar while I'm sleeping :)

George talking to himself in his fort :)

Watch out mom and dad, your counter tops aren't going to be safe much longer!

Hi handsome :)

This laugh is contagious!

Morning!

Monday, January 25, 2010

Rewind - everyday December

In the midst of all the big moments in the last few weeks, I missed posting on some everyday cuteness :)

Nothing better than seeing Samuel play with his toys :)

Excuse me, pass your glass over here please!

Daddy couldn't be prouder :)

Yelling, or singing really loud? Cute either way :)

I'm pretty sure the song is All By Myself... don't wanna be all by myself...

Awaiting the third stooge :)

Bath time makes me happy!

George gets his first drum lesson... great fun until the spoon jumped out and knocked him in the forehead!

Excuse me, have you seen my puffs? I could have sworn there were two more somewhere?!

Sunday, January 24, 2010

Rewind - New Years

The few days between Christmas and New Years were filled with George's procedure, getting ready to move, and of course visits with Samuel... and a visit from Jeb and Tish! They were here for all of those things, and we had such a great time together :) Plus, it was a crazy few days, and they stepped right in and were so helpful. Talk about great timing!

Like GrandMo and GrandDo's visit, I found myself getting to the end of the visit without many photos... but I love these two.

We love our uncle Jeb! Too funny, the paint in Jeb's hair was entirely too telling of their visit. So much for a vacation, besides enjoying our time together, they painted, cleaned, and helped pack. Thank you!

On New Year's Eve we may not have had hats or noise makers, but we had more than enough smiles :)

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