Happy Easter

Happy Easter! What? I'm a day late? Story of my life these days :)

It was the babies first Easter and I did my motherly duty of dressing them up in embarrassing little hats and taking photos :) I LOVED every minute of it!

We also went back to church, together, for the first time since we left for the hospital 10 weeks ago. We had sitters - well, Omi and our friend Brooke, not too many people brave (or crazy?)enough to take care of our kiddos yet - ha ha! It was awesome :) The church community has been so incredibly supportive, and faith has played such a huge role in our lives over the last few months, that we both literally had tears in our eyes on the way there. When we got there I even had to duck into the restroom to dry my eyes and compose myself. Crazy how emotional it can be, especially when your church meets in a school cafeteria :) Goes to show you how little the building actually matters! It's what's inside that counts :)

And inside was great! The people, the community, the music, the message... it was exactly as we remembered :) Of course it was a great day to go back with the lilies and the message of Easter - a message of hope, new life, faith, and love, even during tough times. Lots of people could use that message these days, us included :)

There's even Easter in the hospital! Check out my cool duck from one of my cool nurses :) Now give me a hug!

The two stooges await their third :)

One of the best Easter presents :) This card is about two feet tall! I teared up, so you know the babies loved it too! This was a card from the kids at church :) (LOVE the giant envelope - kids are so creative!)

The excitement of Easter was just too much for Miss Olivia :)

Danger - blind curve ahead

You know that feeling - you're enjoying the roller coaster ride, your stomach isn't too flip-floppy, and it just feels fun? Then... there's that blind curve that jolts you back and sets your head swimming? Well - that was us yesterday!!!

I'll start by saying that all is well now :) I'm pretty sure that George thought that if he held his breathe he may be able to visit his old friends at the hospital. Little did he know that we would visit our local hospital instead :)

Our George, who has kind of coasted along with only relatively minor blips along the way, refluxed yesterday while being burped, which is a very normal thing... unfortunately he couldn't clear the reflux on his own. It stuck in his throat... we tried pats on the back, rubs on the stomach, and suction in the mouth and nose with the bulb, but nothing was working. He started to turn an awful shade of blue and gray, and his eyes got wider and wider just begging for a breath of air. That's when it got scary and the CPR began... breaths, then chest compressions, the whole nine.

I never thought in a million years that I would have to do CPR on my child. Thank you MUSC for preparing us so well! (Every parent who has a child in the NNICU is required to take it - thank goodness! After this, I think every parent should!) While I was doing CPR under the watchful eye of my mother-in-law, Omi, our friend Nan, who is also a nurse and had been doing a home visit at the time, called 9-1-1. It was like the movies - and honestly I have a hard time even comprehending that it happened. The firemen got there first and rushed upstairs with their gear. George started to breathe only minutes before they arrived - but he was still not a very pretty color. We started giving him oxygen and down the stairs we went into the ambulance. Once at our local hospital George was examined, his chest was xrayed to check for aspiration, and he was admitted for the night to be monitored.

Crazy - I didn't cry until they told me he would have to stay the night at the hospital. You would think that after so many nights of just that, I would be just fine! But no, I guess something like that never sits right when you're a parent :)

DB stayed with him overnight and I came home to relieve Omi and take over with Olivia. George had a good night (although I'm not sure DB got much sleep!), and was released this morning. He is not wireless anymore :) He is now fitted with a monitor exactly like Olivia's... thank goodness, maybe we can stop staring at him now :) Maybe not...

**Side note - if you're someone like me who got trained in CPR many moons ago, and haven't thought twice about it since then, seriously consider getting retrained! Yes, I realize my kids are at a higher risk because of their prematurity, but George is the baby who hasn't had any events in weeks! He was the one we, medical professionals included, thought would never need it! I'm sure either your local hospital or Red Cross could hook you up :)**

Chillin' in the hospital with DB near by all night... once you are discharged from the nursery you can't be re-admitted, so George and DB were in a standard room in the pediatric wing. Little boy in a big room!

Back at home with his monitor and a present from DB... a friend to keep him company while in the hospital. His name is Reflux :)

This picture has nothing to do with George, and isn't even recent :) I just love it! DB and Samuel reading together, before he got out of the isolet.

Again, nothing to do with George :) Olivia was the first to try out the swing! She seems a little unsure... but very adorable :)

The Best Weekend... so far...

What a weekend! Yes, it's Wednesday, and I'm just now posting... but I'm doing it from MY couch! Two days shy of ten weeks, I am home!

Now, on to the important people - the babies :) ALL had great weekends!

Samuel has had a great last five days! He took a bottle for the first time, he breastfed for the first time, he is rockin' the physical therapy, and the meds for his lungs ended and have worn off and he's still breathing like a champ with just the nasal cannula! We are convinced he wants to come home soon to be with his brother and sister :) Driving away from Charleston without Samuel was every bit as painful and difficult that we thought it would be. But his progress outweighs any sadness! Plus, between his Omi, our friend Sarah, and dad and me, someone has been there every day to cuddle and read to him :) Can't wait to have our little man home!


And Olivia and George are home!! I can't believe there are babies in our house - it's so crazy! We wake up in the morning (every couple of hours actually :) ) and there are two little beautiful babies that we get to care for... too cool. Olivia is on a monitor for her heart and respiratory rates, and George is wireless! It is unbelievable! We keep questioning the sanity of the hospital folks for entrusting us with these amazing little beings :)

It's funny, speaking of babies being home... a few of the things I missed the most about home were the dogs, my bed, and my shower. Those are the three things I've seen the least of since being home! Who knew you could spend so much time sitting on your bootie in a rocking chair... feeding, playing, and just watching them sleep :)

We're outta here! Too funny - the nurses have to carry them out of the hospital, not us... guess they've worked too hard to let us blow it on our way out the door :) Probably a safe way to go!

HOME!

Well hello there! Long time, no see!

Lovin' life... now where's our brother?!

Byrne Family

That's right! Our very first family photo!!! It was a FANTASTIC day, as you can probably guess :) Our babies were together again for the first time since they were born, 9 weeks ago!

There are four different nurseries in the hospital... the Neonatal Intensive Care Unit (NNICU), then the Special Care Nursery (SCN), then the Level 2 Nursery, then the regular nursery - not sure what they call it - the one for giant babies who go home two days after they're born :) All of our babies started in the NNICU, and a few weeks ago Olivia and George were transferred to the SCN. Today, Samuel was transferred to the SCN!!! It was such a wonderful surprise! He also came out of his isolet and into a radiant warmer (more of an open bed, but with the ability to warm the baby with a heat lamp from above). With Olivia out of isolation (yea!), and both she and George in open cribs, and Samuel in the radiant warmer - we were able to all climb into Samuel's bed to get our first group photo :)

Samuel is now a little more than 3 pounds, Olivia is a little more than 5 pounds, and George is more than 5 1/2 pounds. Too funny, we thought Olivia and George were tiny... until we laid them all together :) But our little man, Samuel, is growing by the day!

I'm not going to lie... DB and I both had tears in our eyes :)

I'm guessing this is a sign of things to come... one covering the face, one with one eye closed, and one not even looking at the camera! But they sure are cute :)

LOVE the babies! Together at last :)

The Byrne Family... of five!

Roller Coaster Part 2

Everyone is improving! Lately, the roller coaster ride has had fewer downs and more ups - yea!!! In fact, we may be close to bringing one or two of our babies home soon! We've had a few tentative dates for Olivia and/or George to come home, but so far they haven't exactly followed our plan :) Go figure! It's funny, I'm not sure I really even have a vote any more... my plans are entirely up to them :) Lots of people told us how much our lives would change... now we're living it!

We are also preparing for a new challenge. Bringing one or two babies home also means leaving one or two babies at the hospital, a 90-minute drive from home. I'm not going to lie - I have a ton of anxiety. We have been so blessed to have a room at the RMHouse right across the street from the hospital - and I am scared to be further away. I actually planned a trip home to help DB with final preparations and completely chickened out after a minor break down. Luckily, DB has got the homefront under control :)

In short, George needs to consistently gain weight in order to come home... Olivia needs to consistently gain weight and keep breathing... and Samuel's lungs need to heal. George and Olivia both had tentative dates of coming home tomorrow, but that's been changed to "soon" - and Samuel should be another seven weeks.

Here's the longer version :)

**The new test for all the babies is for ROP, Rentinopathy of Prematurity. When babies are born premature, the vessels in the eyes have not grown to maturity so they are checked to make sure they continue to grow. All premature babies get tested for this every two weeks until the vessels in their eyes are "mature" - when they have grown from Zone 1 into Zone 3. Levels of the disease can range from stage 1 to stage 4. Stage 1 is considered not a huge deal and there is no intervention - the eyes usually fix themselves. At Stage 4 they can actually intervene with laser surgery - crazy! I've met quite a few people who's children have needed this surgery... again, it amazes me that this type of thing can be done on such little tiny people! The word "disease" is a scary one, but in this case it can be something that goes away entirely, or has minimal lasting effects, with proper diagnosis and care :) **

Olivia – is a beautiful, strong girl, but still comes up with new ways to get attention :)

She's doing her car seat test - 90 minutes in the seat with no events - yea! The bad news for DB and I - this smile was the one time she was happy in that car seat! (And no, her car seat is not blue - it's pink of course!)

Who's the princess?

- Lungs - she has been on room air for weeks now! But, the last three days she has had apnic events - she has stopped breathing due to reflux. It's pretty scary, especially when she turns blue. But, we're trying new things to help her out.
- Brain – from the beginning she has been clear – no bleeds! Yea!
- Heart – her ductus is still closed!
- Stomach – she's eating well! Her feeding tube came out last week! Actually, she pulled it out :) She didn't want George to get too far ahead of her - she IS Baby A! Since then, she's eaten without it! Just need to control that reflux...
- Eyes – after the second eye exam, her vessels are mature and they didn't find any disease!
- Ears - she passed her hearing test!
- Other – she seems to be anemic, so she received a blood transfusion a few weeks ago. Since then it seems much better, but still a little lower than normal. Also, she is still in isolation but could be out as soon as tomorrow. She passed her car seat test!
- Prayer requests – that she has no more events where she stops breathing!


Samuel – is still our fighter!

Nothing better than a cuddle with dad :)

Hey! That's not dad?! Hi turtle :)

- Lungs – this is still Samuel’s biggest struggle. He came off the JET ventilator more than a week ago - yea!! Since then he has weened on his CPap, and could go to nasal cannula by the end of the week. He's made many of these improvements while on medication (steroids), which reduce some of the inflammation in his lungs (which was caused by the ventilator - catch 22). With each round of the meds (he's on his third round now) he has taken 3 steps forward and 1-2 steps back - so overall he is improving a little bit at a time! We are really hoping that this time we will be able to get to, and stay on, nasal cannula. He has also had to have 5-6 blood transfusions due to low red blood cell counts… which help with the oxygen level in his blood… each has gone well.
- Brain – the grade 1 bleed is still there (the worst being a grade 4), but the doctors still don’t seem too concerned. For the grade 1, they just let it heal itself. His was actually so small that the doctors said a few years ago, with different technology, they wouldn’t have even seen it.
- Heart – since his surgery, the ductus has stayed closed! Yea!!!
- Stomach – he is a wonderful eater! In fact, he's even getting a little double chin :) I never thought a double chin could be so exciting!
- Eyes – his vessels aren't quite mature yet, but they have grown into Zone 2! They have seen stage 1 disease, but are not worried at this point - they think it will fix itself. One concern is how much oxygen he has received due to his lungs. Another catch 22 - need the oxygen to breathe, but it increases our worries about his eyes.
- Other – he has not had any IV's or a PIC line for quite some time now - we really hope it stays that way! (No hearing or car seat tests for Samuel yet.)
- Prayer requests – that his brain absorbs the bleed, his eyes mature, and that his lungs heal!!!


George – continues to lead the way with growth!

What's up mama! Just hangin' out and lookin' good in my cute outfit :)

Mom, was the mohawk really necessary? (Absolutely!)

- Lungs - he has been on room air for weeks now! And no events for quite some time!
- Brain – after the last scan, it appears his Grade 1 has absorbed and is gone!
- Heart – has been good to go from the beginning!
- Stomach – he's an eating champ! Not sure where it's going though - the boy needs to continue to gain weight. Also, he never developed NEC - everything was simply attributed to gas :)
- Eyes – after the second eye exam, his eyes are not mature yet - still Zone 2. So far no disease has been found!
- Ears - he passed his hearing test!
- Other – he has had no additional IV's since the "unicorn" :) He passed his car seat test!
- Prayer requests – that he gains weight consistently over the next few days and that his eyes mature.

I would love to give a more definite date of when the babies might come home - but we have had too many tentative dates that have come and gone to be sure enough to post one! Instead, we focus on the fact that each day the babies are getting stronger and healthier - even if they're not following our plan :) It's a good thing there's someone with a bigger plan than we could ever imagine :)

A prayer request for DB and me... strength when it comes to bringing only one or two of our babies home. It's such an exciting thing to think about having part of our family at home! But, we also think about the fact that we will be so far from Samuel for so many weeks, and it just kills us. Of course one of us will try to visit him every day, but it's just not the same as being near him all the time.

Home and "The House"

I can't believe it... today marks exactly eight weeks since we left home for the hospital! But who's counting :) Eights weeks ago today we were still hopeful that this was just another visit to the hospital (there had been quite a few before - and even one to this hospital), and that either we would be sent home with strict orders, or we would spend a few weeks in the hospital monitoring my belly. Nice plan, huh?! As it turns out, OUR plan wasn't exactly THE plan - funny how life works out like that, especially when kiddos are involved :) The babies came two days later!

THE plan has taken us on a crazy, amazing, eye-opening, scary, wonderful journey over the past eight weeks. One of the experiences we haven't written a lot about is our living arrangements... I still can't believe I've been away from home for eight weeks! Besides the NNICU, this has been one of the most eye-opening experiences...

I never really knew much about the Ronald McDonald House, except that when I got my value meal there was always a little container to donate your extra change. If you have ever donated your change - THANK YOU!!! The RMHouse has been my house away from home - my bedroom is exactly like a dorm room, with two twin beds, a night stand, a desk, a little shelving unit, a sink, and a mirror. There are communal bathrooms, except in the transplant rooms - these patients can't be around other people very much so they have their own bathrooms. There are a lot of neat things for the families staying here - a TV room, porches that face the sunshine, a conference/game room, a kids playroom, a laundry room, and a nice sitting area. But I am typing from one of the most used rooms in the house - the dining room :) Which is attached to a large kitchen!

A different group comes in every night and makes dinner for everyone staying here - it is absolutely amazing. There are generally enough leftovers for lunch the next day :) There are also donations of breakfast foods, snack foods, lunch items, orange juice, milk, etc. It might seem a little strange that I am focusing so much on food... but for families who are at the hospital all day, generally don't have a car here, and carry a lot on their shoulders, it is such a huge blessing to not have to worry about finding food three times a day, every day. Staying healthy is something the nurses emphasize daily to parents, and nutrition plays a huge role in that.

There's another great thing about the meals and the dining room that has nothing to do with food - this is also the place where you hear the most incredible stories. Not incredible in the way you might think... but incredible stories of triumph, pain, hope, sadness, and joy. I have met some of the strongest people here - families who carry loads I couldn't imagine. There is never an empty room in this house - actually, there is a waiting list of families needing somewhere to stay while their loved ones, most of the time children, are either in the hospital or receiving daily treatments there. (When I was discharged from the hospital, I did not have a room here the first night... I was lucky to have incredibley kind friends with a house close by, and DB here with a car.)

Life takes some crazy turns! The RMHouse, the volunteers, and the people who support this house may never know how they have lightened the load of so many people, the Byrne Family included - I wish I could hug every single one of them :)

Baby time! Sleeping babies :)

Olivia cuddled in for a good snooze :)

Samuel chillin' with his toes stretched out :) (Not really sure why he looks a little blue in this photo - he's actually quite pink! But I couldn't resist posting this cute pose!)

George passed out with his paci :)

Bathing Beauty

George isn't the only baby who looks adorable taking a bath! We think Olivia is a huge fan :) She's had a few tub baths - and from what we've seen, she likes the water too! So far, so good :) (We can't WAIT until Samuel is big and strong enough for his first bath!) A few shots of our bathing beauty...

Hmmm... this isn't so bad!

Wait a second... maybe it is bad?! But these bubbles are pretty awesome!

Excuse me, you in the blue plastic suit - whatcha doin'?

Now THIS is the life :) Chillin...

Sign me up for another one of those, please!

**Quick update from my last post - Samuel is still off the ventilator! It's not close to easy for him to breathe yet, but he's fighting to stay off the ventilator and on CPap! Plus, he's got great nurses and doctors fighting for him too :) Thank you for your thoughts and prayers!**