Monday, March 30, 2009

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.

Monday, March 23, 2009

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 :)

Wednesday, March 18, 2009

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!**

Monday, March 16, 2009

A good week

LOTS of reasons to celebrate this past week! It was a busy one... but from what I hear, that's normal when you have kids :)

First, we had family in town! We are lucky to have some local family too :) But last week we also had visitors from far away - DB's brother and stepmom from Virginia, and BB's mom and dad from Arizona. What a treat! This alone could be the subject of a really long post - we had such a great time! Both were visiting on their spring break's (DB's brother is a senior in high school... and BB's dad is both teaching college and taking classes) - we felt so special that they were able to come and be with us during their breaks! Family is so important, and it was such a blessing that they were able to come and meet the babies. I'm telling you - photos are good - but in person, these babies will take your breath away :) No, of course I'm not biased! ha ha! There is absolutely nothing like sharing this experience with your family.

Second, the babies are having a great week! Briefly - Samuel came off of the ventilator on Saturday night! More details to come soon... but for right now, we really need prayers that he can stay off of the ventilator. So far, he's a little rock star on his CPap (gives him oxygen, but doesn't breathe for him like the ventilator)! But, the meds they gave him to heal his lungs are starting to wear off... by Tuesday afternoon they will be out of his system and we will know what's really going on. DB and I are excited, anxious, and optimistic! Also, all babies had great reports on their initial preemie eye exams :) YEA!

George has started to wear "man pants"!

Yes, it's a BB term... love seeing babies in little pants :)

Olivia sleeping with her tongue sticking out - as usual!
Lucky girl, she's still beautiful :)

Samuel just before the ventilator came out... "after" photos coming soon - without all that tape we can see his face again! I think the little hand trying to pull the tube out is a fairly good sign that he didn't like it!

Monday, March 9, 2009

One month

Talk about a big few weeks! And I thought DB and I had been busy... check out how much our babies have been doing! They've managed to almost double in size! Compared to that, we've had it easy - that has got to be tough work.

Sad - the photos are their one-month photos... but they will be six weeks old on Wednesday! I suppose time flies when you're having fun :)

Samuel - started at 1 pound 9 ounces - now nearing 3 pounds
Olivia - started at 2 pounds 12 ounces - now 4 pounds
George - started at 2 pounds 10 ounces - now 4 pounds 4 ounces

More updates on the babies soon - but check these out... we love the babies!!

Just a reminder of how big their animal friends are - that's BB's hand :)

Samuel and his turtle - his watchful friend :)

DB's wedding ring doesn't fit over Samuel's hand anymore!

Up close and personal - not sure Samuel appreciated the flash :)

Olivia's octopus must be very funny :)

Sweet girl waking up for the photos and holding on tight to DB's wedding ring

Apparentely she thinks we're funny too! Funny looking that is :) (Long story on the lovely blue gowns we're wearing - short explanation is she had an eye infection but all is well now.)

George with his crab... again, not because he's crabby :)

George chillin' with dad's ring

George checkin' us out

Wednesday, March 4, 2009

Happy Birthday

Happy Birthday DB! Your first birthday as a dad :) Amazing!

His birthday was actually yesterday, Tuesday, but by the time the celebration was over, it was too late to post :) What a great evening we had! We spent time with the babies (DB's mom was here too!), went to a tasty dinner, and then came back to spend time with the babies and have birthday cake with our awesome nurses. Oh how life has changed - there was nothing we would have rather done for a birthday celebration :) And, the babies all had an especially good day - happy birthday Dad!

Yes, I am going to tell you how awesome DB is, but I'll try to keep it brief :) Cheers to a great husband and father! I couldn't ask for a more loving, supportive, encouraging, fun-loving, man... and lucky me, he's mighty good lookin' too :) Just one example of his greatness... for the past few weeks he has been working a full work week, taking care of the dogs, and keeping the homefront in check - and driving over every weekend and at least a few weekdays each week to spend time with me and the babies. It is at least a 75-90 minute drive each way! All this, and nothing but a smile on his face when he gets here :) Love you DB!

A few photos from yesterday...

I wish you could see this birthday card a little closer! The nurses made it, and put each of the babies' little handprints on it! It was the best gift :) (That's Samuel with us!)

What do you want for your birthday? How about changing a diaper - yea! (George was the lucky winner :) )

A great birthday - cuddle time with each baby :)

Red cheeks when we, nurses included, sing happy birthday :)

Time to serve the cake!