Had to throw it in there...

Even though I already did a post for tonight, (see below) I couldn't resist this picture of Jack "supervising" the blog.

Another Day

Friends of ours (Mark and Ev) are over for the evening to hang out. It's been great laughing and talking with them; not feeling drained or overwhelmed with NICU stuff. It's been a really long day filled with the same battles and awkward conversations.

Josiah's IV line and splint (sorry for the blurry picture, he wouldn't stop moving)

Lilly curled up; love that hair growing out!

Steve was changing Josiah's diaper...he wasn't very happy about it :)

Hanging with my baby girl

Burping!

We take feeding time very seriously

Exhausted

The “Car Seat Test”

Here’s the idea:  At the hospital, the babies aren’t up walking around or even sitting up at the table or in an office chair.  Instead, they spend their life laying perfectly flat or, on an adventurous day, at a slight incline.  While Lilly’s heart rate has been stable and she has had no episodes of bradycardia, they need to know that she’ll do equally as well sitting up in her car seat.  To assess this, they use the ingeniously-named “car seat test”.  Like I always felt tests in school should have been, it isn’t anything we could help her study for and the expectations were clear – sit in the seat for an hour and don’t have trouble with your heart rate or breathing.

I was proud to be commended by the nurses for actually knowing how to work the car seat.  The presumed ineptitude of fathers is distressing, but that’s a long blog post for another night.  I didn’t bother to tell them that Bethany and I took the seats out and made sure we knew how to work everything the day we bought them (the blog will be more accurate than my memory, but I think it was very early January).

  

 

I wonder if a class full of Middle School students could pass a just-sit-there-and-don’t-do-anything-for-an-hour test…

Lilly passed and has one less thing to do before she can bust out of the hospital.  She’s been a bit sleepy last night and today, so she’ll try again with her feedings tomorrow to see if she can muscle through 6 by-mouth feedings to graduate up to 8.

 

Josiah’s day was rough and I’d handle it exactly the way he did: scooting under the fluffy blankets and sleeping it all off.  When we got to the hospital today, the doctor told us that the CBC (“complete blood count” test – learn about it if you’re really bored) done yesterday showed his red blood cell count being very low.  She said that could be a significant contributor to his bradycardia (and associated need for caffeine) and to some of his sleepiness that was keeping him from progressing with his by-mouth feedings.  To address this, he received a blood transfusion (like Lilly did a couple weeks ago) this evening.  On its own, that’s a big ordeal, but they had to draw blood first, then put in an IV, and then keep flushing it (all between feedings when he should have been sleeping).  By the time everything was finished, he cried (I kid you not) whenever that nurse was near him.

Trying to get some rest BEFORE all of his excitement

 

Getting some sleep after everything…

We didn’t get any pictures in-between and tried to just let him have a break.  His transfusion finished while we were there and he’ll get a good night’s rest tonight.  They tell us to expect him to be doing better tomorrow and hopefully have a huge boost in his energy and exciting progress with his feedings.

 

We have these other pictures of Lilly from today:

On the scale, showing her weight at 1924 grams (4 pounds, 3.8 ounces) [Josiah weighed in at 4 pounds, 12 ounces].  She got a bath a few seconds later and appreciated it as much as the cats do.

 

Taken while working on a bottle and being pretty serious about it.

 

I hope we’re just about ready to start counting Lilly’s remaining days at the hospital on one hand!

Happy Birthday

Today, Lilly and Josiah are one month old.  On one hand, it is hard to believe it has been a whole month.  On the other, it feels like we’ve been living at the hospital for an eternity.  It is sad that they’ve only been able to lay next to each other 3 times and are otherwise in what must seem to them a frighteningly large crib by themselves.  We’re sad that instead of soft classical music or lullabies, the sounds that they fall asleep to are the beeping of monitors and chaos of the NICU.

We’re excited for the progress they’ve made.  The scheduled c-section was for March 23rd – poor Bethany would still be carrying them all over the place for almost another month!  Instead, they’ve hatched and (with plenty of help) have learned to breathe on their own, to keep themselves warm, to open their eyes and make funny faces.

Yesterday, we got a chance to talk with the nurse about a timeline for going home.  Josiah gets 4 chances each day to take one of his 8 feedings by mouth.  If he successfully takes 4, he’ll graduate up to 6.  Lilly is one step ahead of him, getting 6 chances each day to take her feedings by mouth.  Once she successfully takes all 6, she’ll move on to being able to take all 8 of her feedings by mouth.

With a couple small exceptions, the feedings are their last hurdle before coming home.  If Lilly were to take her 6 feedings today, her 8 tomorrow, she could potentially come home on Tuesday (after taking all 8 feedings, they take their feeding tube out but the babies have to do okay one more day before being set free).   While that is exciting, she’ll need a few more days than that (but it’s entirely possible she’s home by the end of the week).  Waking up and drinking 1.25 ounces of milk every 6 hours is exhausting for both of them now.  Yesterday, Lilly took a stab at all 6 of her feedings, but the last couple she was just too worn out to finish.  As they build their stamina over the next several days, they’ll both make their way to their final goals.

Bethany and I would normally be arriving at the hospital and getting ready to feed Josiah but we opted to take this morning to rest and slow things down a bit to avoid over-exhausting ourselves.  We’ve had tons of help over the last couple weeks which has helped us keep things under control.  Unfortunately, we’re the only ones who can rest and get sleep – we’re trying to make sure we don’t overlook that.

We’ll head out to the hospital in a couple hours and the day will pick up momentum like the days before it, but it’s felt great to rest for a bit this morning.

[Since we haven’t been to the hospital since Bethany’s post yesterday, there’s no new pictures for me to share with you – you’re out of luck! Scroll down to see her post and the pictures if you haven’t seen them yet]

The Grandparents

When Josiah and Lilly first went to the NICU, the visiting policy restricted their visitors to only Steve and I. Sometime between then and now, the policy was changed to allow new Grandparents to get a very quick look at the babies. A few days ago, Steve and I asked about the gradual increase in visitors and found out that there weren't groups of grandparents sneaking in but that the hospital was now allowing them a visit. Our parents were excited when we told them yesterday that they could coordinate a trip to the hospital and sneak a peek at Lilly and Josiah. As you would expect, they didn't schedule it for a week from now, but the very next day!

Like every time we visit, they had to scrub and wear a gown. Their visit was one at a time (with Steve and I present) for a couple minutes and they weren't allowed to hold the little ones.

No matter... we had a good time. Here are pictures from today:

Lillybel

Josiah

Lilly

Josiah

Grandma Brenda and Josiah

Grandma Brenda and Lilly

My mom and I

Josiah, Grandma Holly

Grandma Holly and Lilly

Slept through it all....

Grandpa Mark and Josiah

Grandpa Mark, Lilly and I

Grandpa Steve and Josiah

Grandpa Steve and Lilly

Pictures of the munchkins

Thoughts of a thankful girl

I used to be a -relatively- uncomplicated person.

Ever since Josiah and Lilly were born I’ve become a bag carrying, diaper changing, multi-tasking, bottle washing, tiny clothes folding, milk making, hospital navigating, doctor challenging, picture taking, caffeine drinking, ear-to-ear smiling, impromptu crying mother of twins.

I’ve learned to push, challenge, question, argue, contemplate and yell my way through layers of CRAP doctors and nurses have told us (while trying not to lose a healthy measure of civility and perspective).

Thankfully, (I feel) I’ve managed to stay pretty sane. Steve may disagree, but the beauty of a blog is that you get to record YOUR thoughts. He is currently fighting with a almost empty bottle of lotion…and the lotion has squirted all over him, so you make the call. (“Now my hands are extra-lotiony!” he’s yelling.)

Let me share, if I may….

No matter what people say the secret to a “good” marriage is, (for me) I’ve learned that if you can’t laugh…if you can’t joke and tease each other…if you can’t share a smile in the midst of embarrassment or difficulty, you will have a very hard time in EVERY other area. Thank goodness for Steve. Thank goodness for a foundation of understanding and love. Without it, we’d be lost…unable to connect with each other or even the babies.

I’m ok with lugging a diaper bag, camera bag, pumping bag, and cooler full of milk to the hospital everyday. I’m ok pumping every two hours. I’m ok smearing ointment on Steve’s burns (HOW he managed to burn himself this badly is still a mystery!). I’m ok being without the babies tonight because this is one night CLOSER to having them home. We’d rather wake up to their cries in the middle of the night than to a nursery full of baby things but no babies.

We hope you don’t think that our lives will continue to be completely wrapped around our children. We’ll eventually get out with our friends and stop bothering you with the details of how much they poop and how many times we feed them. For now, this is our life. This is what we think about 24/7. This is who we are.

And we’re so glad.

Thanks for sharing this with us.

Lilly-

Josiah-




Sporting a fancy hat from Grannie B!!!

Lilly in her hat-

Throughout the day, Lilly snuggled deeper and deeper into her blankets:

Josiah-