More Firsts

Wednesday:

• Wiley you took your first bottle - 10 cc's. For it being the first bottle, you did a good job of working on sucking, swallowing, and breathing. Keep it up, bud!

Thursday:

• Wiley you officially met Zsu Zsu when she got to hold you.
• You both showed your Cardinal pride by modeling Zsu Zsu's hat
• Ryan you got to nurse for the first time and did a great job, too!

Friday:

• They turned the heat on your isolates down to room air and you have both kept your body temps up. Which means....it's big boy clothes for you guys now! I will have to bring you some outfits tomorrow!
• You were finally awake while next to each other. 
• You met your Nanny!
• Ryan you hit the 4 pound mark!! We love how much you are both growing! Don't worry Wiley, you're only one ounce away from 4 pounds too!
• Your daddy finally held you both at the same time. 

Keep it up guys - it has been a great week and we have high hopes for next week too!

When I Leave the Room

I wish I had written these words myself. This song / album was written after dealing with postpartum depression. And while that isn't my experience, I can't help but feel connected to these words as I leave your room each day, leaving you in the hospital. And all I can do is hit my knees and pray that God watches over you each night that I am not by your side.

Good night
Looks like we made it through the day
The moon sighs
And I know that we're okay
 
Sleep tight
I love to watch you drift away
I would come with you but on my knees I'll stay
 
Good night
Five little fingers holding mine
Take flight
Into your dreams and lullabies
 
There's nothing more that I can do
But just fall more in love with you
And ask the angel armies to stand by
When I leave the room
 
I'm gonna fail you
I already have
Ten thousand times
I will fall down flat
 
You'll have a seat in the front row
Of everything I don't know
And all I'm trying to be
You'll see
 
Good night
There will be storms that we come through
In time
We will slay dragons me and you
 
I'll always wanna hold you tight
Keep you safe with all my might
So I will leave Jesus next to you
When I leave the room
 
And you will run ahead
As if you know the way
And I will pray more
Then one should have to pray
 
There will be words we can't take back
Silences too
And I'll be on my knees
You'll see
 
One night
When I am old and unsteady
You'll want me to fight
But I'll tell you that I'm ready
 
When there's nothing left to do
I will still be loving you
Then you'll fold your fingers into mine
And I will let Jesus hold you tight
When I leave the room 

Lift Up My Life

Faith is such a funny thing. Maybe not faith. Maybe it's mankind that is funny. Through the ups and downs of our fertility struggle, I trusted God would make us parents one way or another. And yet, as much as I believed that, there were days I questioned His plan. Once we got pregnant, I told everyone, "They'll be perfect. God has brought us too far not to bless this pregnancy." And yet we found ourselves in the hospital, begging God to keep you both safe. And again, there were days I questioned His plan.

Now, here we are, finally with the only thing we ever wanted. We are parents and so incredibly thankful for the miracle of your all's lives. And yet, I'm embarrassed to say, my human brain still gets in the way. I find myself slipping and asking God why we can't have you at home. I find myself asking why we don't get to experience these first weeks and maybe months like "normal" parents. I find myself still struggling as I leave you each day, even though I know you are in good hands.

As I was driving to the hospital today, I began pouring my heart out to God singing along to, "Lift My Life Up." It was such a perfect and much needed wake-up call. The lyrics are right on point to what we, as a family, are going through:

You brought me this far, so why would I question You now
You have provided, so why would I start to doubt
I've never been stranded, abandoned or left here to fight alone
So I'm giving You control

I lift my life, lift my life up
I give it all in surrender
I lift my heart, lift my heart up
You can have it forever
All my dreams, all my plans
Lord I leave it in Your hands
I lift my life, lift my life up

Have Your way in me
Have Your way in me
 
Take my life and let it be all for You
Take my life and let it be all for You

No, the norm is not what God has planned for us. But He has provided us with you precious miracles, so why would we ever doubt His plan? In our darkest days of this journey, God has been by our side the entire time. So, why question Him?

Instead, as I promised at the water's edge on July 9, 2000, I lift my life up to Him. I lift my heart up. And though I know I will fall countless more times, I give it all over to Him and pray that my life can be an example to others.

Santa Baby

What a day, my boys! Today, both of your grandmas visited: Zsu Zsu and Nenny. And what a great day to visit because you were both ready to put on a show!

The first show was when you modeled your new Santa hats made for you by one of your nurses. You were both too cute for words - which of course means your momma went crazy with the pictures! I love the look you're each making in the bottom right picture. You are both clearly saying, "Mom. Enough."

I just couldn't get enough kisses and hugs in today!

After snuggling and loving on you each, it was time to go. However, Wiley, you obviously weren't ready for me to go. As you were getting a diaper change, we all heard a "thud." I thought for sure you had hit the side of your isolate with one of your ever flailing limbs. Nope. This was something I had never witnessed...nor even knew was possible!

You were still going to the bathroom when she pulled your diaper down. The thud we all heard would be the sound of your "business" hitting the front of your isolate. Truly. An explosion unlike anything I've ever witnessed (sorry buddy, but it's the truth!). I think you just needed more snuggles from your momma! So, out you came and back into my arms while your nurse and assistant stripped your isolate, took it out, and brought you a brand new one! Yes. It was that bad. You needed an entirely new isolate. And all in the midst of this, your feeding pump decided to start beeping due to a low battery. Your sweet nurse was running all over the place. And poor Ryan, all of this excitement interrupted the start of your feeding and you were not too happy about it (or was it that you were jealous, missed your momma too, and needed extra snuggles?! I'd like to think the latter, but it was probably the food!).

Finally, all had settled down and you were both snuggled in for another nap. As always, Wiley, you were kicked back and sprawled out and Ryan, you were nuzzled up to your snuggie.

As I do every day, I kissed you both goodbye and headed back home. All week, my evening plans were to decorate for Christmas and maybe do some baking. I have tried to get in the Christmas spirit, but there is just so much going on. Between losing your Great Grandma and having you guys in the hospital, Christmas decorations just don't seem to be a priority this year. All I want is to be with family this Christmas - no need for the craziness of commercialized Christmas. My theme song this Christmas has been, "I'll Be Home for Christmas;" that's all I want - you two home for Christmas.

At this point, I realize that probably is very unrealistic. And while I wish you could spend your first Christmas at home, snuggled with me on the couch in front of our tree, I know you are right where you need to be for right now. You are in wonderful, caring hands when I can't be there. You have people taking care of you who want to see you grow strong and healthy before sending you home. That being said, I did finally cave and decorated our tree. So, if you boys are ready, a Christmas tree is waiting for you back at home! And like the song says, if only in our dreams, you'll be home for Christmas! Love you, my sweet little Santa babies!

33 Weeks

Happy 33rd week boys and three week birthday tomorrow. 

Wiley 

• You are now weighing in at 3 lbs 8 ounces and eating 35 cc's every three hours. Way to go - that was your goal! 
• We are continuing to practice your nursing skills once a day too. Some days you seem to really have the hang of it and others you're more interested in sleeping (can't say I blame you when you are being fed without having to work for it through your feeding tube!). 
• You are our little Houdini. Your nurse put you on your belly, all wrapped up in your snuggie, and came back to find you on your back. Later, the doctor found you out of your snuggie and at the top of your mattress. Not sure how you're doing this little Squirmy Wormy, but the doctors joke that you'll be crawling out of your isolate before going home!

Ryan

• You are now weighing in at 3 lbs 11 ounces - we are so excited that this isn't IV fluid weight, but a healthy weight now!
• Today you began compressed feedings - 30 cc's every three hours! Yay - this was such an exciting step. If you tolerate these new feedings, you will hopefully lose your cannula in the next few days. And even more exciting, you will begin nursing once a day too. 
• You are our little observer. You are so much more alert this week. When people are talking or your machines beeping, you turn towards the sounds. You like to focus on objects around you and hold your gaze much longer than last week. 

It is so exciting watching the growth you are making each week. Keep it up boys and you'll soon be home at last!

Snow Day Snuggles

Today was your first snowstorm! The morning started out wet and rainy, then sleet, followed by ice, and finally with about 3 inches of snow.

But no worries, no ice nor flake would keep your momma from you (thanks to Paka driving me down in this terrible weather). We snuggled close all morning and afternoon and listened to some Christmas carols - now that's my kind of snow day!

best buds already

Two Steps Forward...

Before you were even born, when we began to realize there was a chance you'd be spending some time in the NICU, we were told by several different parents who experienced life in the NICU to be prepared for "two steps forward, one step back." We had been told not to stress over the constant beeps and dips in the monitors. We were told not to get down when faced with backwards progress. This has been such wonderful advice and has helped keep your daddy and I strong. I'm typically such a worrier, but I just know this will all just be a fleeting memory. So far we have been very blessed that we haven't really taken any steps backwards yet. However, Wednesday we did face a tiny bump in the road...

Wednesday morning I arrived to the NICU with Aunt Aubrey. As soon as we got there, we were given an update from both our nurse and the doctor. Side note: your NICU room is directly across from the doctor's office - literally two steps away! So anytime we arrive, we are always given an update directly from the doctor. This has been a fabulous little perk! After positive reports, the nurse asked if I was ready to love on you two, and as always, I answered, "Of course!" I was pleasantly surprised when she asked if I had / would want to hold you both at the same time! I was over the moon. You two have been side by side when your daddy and I both hold you, but I had never held you both myself. I was ecstatic!

Ryan you were just loving life next to your brother!

After an hour and a half of snuggles with you two, it was time to eat. Again, I was so pleasantly surprised when the doctor asked, "Want to try nursing today? Of course, it wouldn't be for nutritional sake, but for the sake of practice." I was thrilled! Ryan, you went back to your bed at this time (you would get to try later that afternoon). Wiley, you tried first because you are on the condensed feedings every three hours. So, while you were being fed, I was going to nurse. This way you'd make the connection between nursing and getting a full belly! I was thrilled when you actually did nurse for quick periods of time over the hour that we tried.

Ryan, since you are still on continuous feeds, we decided to wait until you begin the condensed feedings as well. The nurse thought it would better help you make the connection between nursing and getting full.

After nearly four hours of snuggling and loving on my boys, you were both ready to go back to your beds. I was so excited that you were both able to maintain your body temperatures for such a long period out of your bed. It was such a fabulous afternoon together!

After such a busy and full morning, you were both conked out & ready for another nap

Wednesday night, your daddy came to visit you all with Uncle Johnny. Besides loving on our boys, he had another mission: don't forget extra bottles for me. So, once I knew he was at the hospital, I called to remind him, "Do you have the bottles yet?"

"Well...not yet, no."

There was something in his voice that made me instantly ask, "Are the boys okay?"

"Well..." (the longest two second pause of my life!) "Ryan had a bit of a scare this evening. But he's doing better now." Your daddy then explained to me that when he walked into your room, there were two doctors and a nurse working on you, Ryan. Trying to break the tension, he said to the doctors and nurse, "Well, this isn't what you want to see when you first show up!" They quickly reassured him that it wasn't that you were in any serious harm, it was mainly just because of a shift change and the doctors were coming up with a game plan.

Ryan, you had de-stated again several times after I left, and for the first time in awhile, dropped your heart rate without being able to bring it back up yourself. On top of that, you were retaining all your IV fluids (even though they had been stopped a day ago) and had become pretty puffy. The doctor decided to run a few labs to check for infection and an x-ray to make sure you weren't retaining fluids around your lungs. Thank God, all of those tests came back perfectly normal. So, they decided you were just telling us, "Hey, I'm still a 32 week preemie; I still need some extra assistance here!" They gave you one dose of medicine to help bring the swelling down and help you get rid of the extra fluid, as well as put the cannula back in your nose to give you a little bit of extra flow for your breathing.

I called the NICU more times than we usually do last night, just to make sure you were okay. Each time we were reassured that all was well and you hadn't de-stated as much.

This morning, they tried to remove the cannula Ryan, but you weren't quite ready for that. So, you're still getting a little extra help. But I think the most help came when you were again reunited with your brother!

Holding you both yesterday was just fabulous, but today I got to kangaroo you both! This was even better - for me and for you guys! You haven't been this close to each other since before you were born. Both of your oxygen levels were at 100% most of the time we were together - the highest it's been for you Ryan in a long time and Wiley, you held steady at 100% longer than you usually do.

Wiley, you got your 12:00 feeding during kangaroo time. I was shocked and excited; as soon as you began getting your feeding, you began imitating nursing again. It was neat to see you making the correlation between feeding and nursing!

Over the past two days we have taken several great steps in the right direction, with just a tiny hiccup last night Ryan, but not even enough to call it a step backward. As always, we are so thankful that God has His eye on you two and continues to keep you so safe and well. We are already so blessed to have you sweet boys in our life. We pray you both continue to grow, improve, and trust that in God's perfect timing you will come home!