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.

1 comment:

Rikki said...

Those pictures are absolutely gorgeous! I love the one of Olivia smiling! You can REALLY tell that all three of them are getting bigger! Good job mom and dad. I am so glad to hear that all of the kids are making strides. Although it will be hard, the five of you will be together at home before you know it.

B- please take care of yourself. Your little ones need a well rested, well fed Momma. You are no good if you run yourself ragged. I know DB is your rock, so lean on him if you need it. :)

Thank you so much for the updates, they brighten everyone's day. Cannot wait to meet George, Olivia and Samuel some day!

Hugs to all,