Saturday, September 26, 2009

The Ride Isn't Over Yet

We've been through a lot in our three months at the NICU (well, three months tomorrow, anyway). We've had highs-- the day Annaleigh's bed was moved to between Lily and Charlie and all three babies were in a row was my personal favorite-- and we've had lows-- you know this already. But the hardest part of all is the suddenness with which things turn.

Yesterday morning, we were excited about how soon we'd have the babies home. It was only a matter of days, no longer a some distant future too far away to be real. Then Lily had her rough day and we were forced to consider that it may be a bit longer. Today, Lily had a great day and we were happy. But then Charlie had a few brady episodes in a row, and once again, we're discouraged.

Lily's formula was changed to a lower-calorie brand and her feedings were reduced to about 45 ml. This change seems to have worked well as she had a perfectly good day. Both Brooke and I got to spend some quality time with The Bug and give her lots of cuddles.

Charlie had a good day too, at least until around 8:30. For some reason, his heart rate dropped considerably out of nowhere. He came back up without much stimulation and his nurse Natalie attributed it to reflux, but why he had reflux over three hours after his feeding is anybody's guess. He bradied again during his 9:00 feeding and took a few minutes to regain his normal levels.

It wasn't the worst thing in the world, but it was disheartening. We really needed to have a good day today after all the worry over Lily yesterday, and we were so close to getting it. Charlie was even supposed to have his car seat test tonight (all the NICU babies need to be tested in car seats for an hour after a feeding to make sure they can handle it before they're allowed to be discharged) but that's been postponed.

Hopefully, tomorrow will be a little better. Lily should be back in an open crib and Charlie may be able to have the car seat test. But for those things to happen, both babies need to have good days. Keep your fingers crossed for that!


Charlie sleeping peacefully (between bradies, unfortunately).


Charlie on the scale getting weighed. He's up to 2810 grams (6 lbs. 3 oz.).


Lily loves her mommy. And in case you can't tell, her mommy loves Lily too.


I can't even say how great it feels to just pick up a baby and hold her and kiss her and love her. So... perfect.


Lily telling us all about her day.

20 comments:

Feris said...

Your babies are just beautiful :) Just a few more days for your family to be home together. I really don´t know about NICU stuff but people say the last few weeks are the most exasperating, but now you can see the light at the end of the tunnel... I´ll keep praying for them!

Newman Family said...

Brandon, my 26 weeker, had a lot of bradies while he was in the NICU too. They finally stopped out of nowhere. His were caused by his reflux and once he was put on medicine they stopped. Your babies will be home with you soon. I remember how frustrating the last few weeks were in the NICU. You felt like you have been doing it forever and just want them home with you. He has been home for one year today after spending 12 weeks in the NICU.

Lauren said...

So, so, so close! You've all made it so far - you can for sure get through this too! Hang in there... I can't imagine the discouragement, but far better to have these things happen in the NICU than at home. Get ready, babies - there's a whole world out there waiting for you!

(LOVE the pics of each of you with a baby!)

Anonymous said...

I swear the babies get more beautiful everyday. So close to ocming home I bet they can taste it but a little extra nicu time won't be bad if they need it. Take care.
Suzanne (firegirl05)

Momma said...

I think they are just pacing you....with kids the parents are never in control :)

It won't be long now, stay positive and the end is in sight

*hugs*
Sarah/Copzy

Anonymous said...

It's gonna happen. Let them get all of this out of their systems so that when they come home they are perfect little love bugs. No episodes - no worries at all. I know it's so frustrating - you want them home now - they will be so soon. Just have patience.

As always - adorable pictures...

All My Love, Auntie :) xoxoxo

Hopeful34 said...

Adorable pics. hang in there..you'll have them home before you know it!!

Stephanie said...

I'm so sorry to hear about a second rough day :/
I will keep my fingers crossed for a better day, a car seat test, and hopefully babies coming home soon!

Amy said...

Sorry about the discouraging turn of events but I'll keep praying that they will be safely home with you SOON!! :) And yay for big babies! :)

Ivory said...

Your comment about "just picking up a baby" was SO true! To me that finally made me feel like a parent. I didn't have to ask "permission" to hold my own child.
I'm sorry that yesterday wasn't a good day. Hang in there, it's almost over!

The Roose Family said...

Lily and Charlie are such lucky babies, it is evident just how much they are loved! I'm crossing my fingers for a good day - it's time for them to come home!

Amy (Washington, DC) said...

I'll be continuing to pray for your precious babies. I have been a follower of your blog daily, and although I don't post comments very often, I am praying daily for them. I am pregnant with my first baby (with some complications), and I draw so much strength from your blog. Thank you, and know you are all in my prayers.

Jo Ann at FTHS said...

Do you ever wonder what babies think about, what thoughts go through their heads? That bottom picture of Lily with her arms outstretched and her hands open is amazing. Look at it again--she looks so incredibly WISE!--you know,like the Dalai Lama or Gandhi, or the infant Jesus in one of those Renaissance paintings. It's as if she is about to make some grand pronouncement: Hang in there, Mom and Dad; this, too, shall pass...

As always, you are all in my prayers.

Kristin said...

I'm the parent of a 27 weeker who has now been home a little over a year, and I can still recall how frustrating those days when going home was so, so close and then seemed to slip right out of your fingers. All I can say is hang in there, it will happen and soon you will be the one remembering the NICU and posting encouraging words to other preemie parents. Stay strong.

njdcgirl said...

I haven't commented in awhile, but I do check in every day or two. I am still amazed and encouraged by both of your strength and courage, and your two little ones. I know it has been a long, painful journey, but Lily and Charlie will be home soon. Thanks so much for sharing your story with us - we're all hoping for smooth sailing from here on out!

Diana Lopez said...

wow, each photo I see of Charlie and Lily, they get bigger and bigger, and so much more beautiful each day...I'm praying for Both Babies, that they hace better days so they could go home with you guys soon.

Carrie said...

I cannot imagine how hard the roller coaster of the NICU must be. We are expecting triplets (I am 30 weeks now) and I am constantly warned by NICU vets about the ups and downs.

Sending you, Charlie and Lily all the peace and love in the world.

Anonymous said...

Babies!!!! Behave yourselves. Mommy and daddy have had enough stress and they need you home safe and sound. Hang in there, Brooke and Joe! BTW-- LLLOOVVVEE the picture of Joe and Lily- ADORABLE!!!!

Hope tonight is better for you!

Cheryl

Anonymous said...

I just got in from NY and checked to see if you posted anything new about my pumpkins and NOTHING... So of course I had to enlarge the pictures again and stare at them and I swear - in this last picture of Lily if you look at her left hand - she is really talking to you. She is just telling you a story. I was telling the kids today - I can just picture Lily walking in my front door with her hands up talking. Lily - I can't wait for that day... You little angels are just soooooooooo cute...

All My Love, Auntie :) xoxoxo

Andy and Lisa said...

:) Lily & Charlie are beautiful! I hope you are able to bring them home very soon.