SANTA

Santa visited the NICU!

Actual Age: 4 months, 4 days
Adjusted Age: 1 month, 1 week, 5 days

Santa visited the NICU yesterday! He comes early for babies in the hospital! Santa is supposed to be for kids, but I think Scott and I were way more excited about his visit. As my last post stated, we decorated the girls rooms, made their beds with fleece snowman blankets and got them dressed in their cute Santa outfits. Scott even searched the halls to determine when exactly Santa was coming to our girls rooms. The girls slept through his visit but we got some cute pictures. Thank you Santa for making our Christmas fun.

Eden was restarted on another burst of steroids this past Friday and they have helped her tremendously. Her O2 needs are down and she is a happier, more alert baby. We are working with her on developmental activities everyday and she just started opening her eyes really wide this week- its so cute.

Reagan's O2 needs have also come down this week but she's not making much progress with oral feedings. She seems to have gotten used to having her tummy filled with breastmilk by her NG tube (feeding tube in her nose) and she's being lazy with oral feedings. The idea of a GI feeding tube has been brought up recently- a feeding tube in her belly which is something we can manage so that she could come home. We really don't want her to have a GI tube but we will do what's best for her. Right now we just need to pray that she starts taking more feedings by bottle or breast.

Christmas in the NICU

Actual Age: 4 months, 2 days
Adjusted Age: 1 month, 1 week, 3 days

We will be spending Christmas in the NICU, so we bought two Christmas trees and decorated them in the girls rooms today. It's far from a normal Christmas but it does look more festive. It's not so difficult that we will be there for Christmas, but rather watching other babies leave the NICU that's hard for us. Babies that were born after ours and even born earlier gestationally than ours. We keep saying, it's just not fair.... We want to be a 'normal' family and have healthy babies, but we are many months away from that. It's hard to understand why... we ask why a lot. We know that God will take care of us and He will reveal His ultimate plan someday, but for now we still ask why.

Reagan is doing well, she's on every other day steroids and breathing about the same. She is breast feeding and bottling once or twice a day. And she's growing like a champ! Just under 9 lbs!

Eden was re-started on another burst of steroids and is being weaned off the nitric oxide. We hope that this progress will help her 02 needs to come down and for her to start bottling this week. She's much more alert and happy this week!

We love these little one's more than the world itself and just want so badly for them to be healthy and to come home. Please pray that we have strength and patience now and in the future.

I love being a Mommy!

Actual Age: 3 months, 3 weeks, 6 days
Adjusted Age: 1 month, 5 days

What an amazing gift to be a Mommy...and for Scott, a Daddy! God has blessed us with our sweet girls. While I was with the girls tonight I thought about the small things that make my heart just melt, when Reagan laughs at Scott's funny faces, when Eden's O2 needs come down dramatically when she's resting on my chest, the way they both recognize our voices. These things are so wonderful to think about- we are their parents and they know this instinctively and they associate us with LOVE! Ten, twelve, sixteen weeks ago we didn't know if we would ever have these special moments. We didn't know if our girls would have one more minute, one more hour, or one more day. Of course, we are not out of the woods yet, our girls have many months left of healing, recovery and development left. We also do not know what their future holds physically, developmentally or socially, but we do know that these two amazing babies love us- their Mommy and Daddy!

There's something else I want to document for them to read one day, and for our friends and family to know what makes them so amazing. A short list of the things I love about each girl. Maybe someday when they are fifteen they will read this and think 'Oh Mom that's soooo dumb...' but maybe they won't think its dumb.....

EDEN
1. I love your perfect little lips
2. I love the way you pout out your lower lip when you're going to cry (Scott loves this too, he says she looks just like me when I cry)
3. I love the little dimples on each side of your hips
4. I love your fuzzy blonde hair
5. I love the way you always have a contemplative look on your sweet face

REAGAN
1. I love your bright blue eyes
2. I love your chunky legs
3. I love the way you hold your hand with your pointer finger bent (Scott has wondered if she has a special gang sign)
4. I love that you LOVE cuddling
5. I love the dimple in your chin

My lists could go on forever, but I wanted to share a few things that make me smile just to type them. Thank you for your continuing prayers.

****************************************************************************************
I thought I would edit the post and give my thoughts

EDEN:
I love the way you look all over just taken everything in.
I love when you are sleeping, you still grip my finger.
I love your little nose.
I love how much of fighter you are already, you are a true inspiration!
I love that you’re my daughter.

REAGAN:
I love the way you suck on your pacifier like a crazy person.
I love how excited you get when your Mom and I walk in.
I love the way you kick when we play with you.
I love when you have your wrist rattles on and you wake yourself up with them.
I love that you’re my daughter.

We want off this rollercoaster!

Actual Age: 3 months, 3 weeks, 4 days
Adjusted Age: 1 month, 3 days

The week started off good.... but we've had a few setbacks, again. Eden was taken off the nitric oxide (for her pulmonary hypertension) and did really great until Friday morning. She was in low O2, alert, active and we worked on developmental activities with her. Friday morning she abruptly went from 35-40% O2 to 85-100% O2. The high O2 is not good for her respiratory wise or for her eyes. We tried to uncover the reasons for the change, her trach was changed, ran blood tests for infection, urine for infection, chest x-ray for possible collapsed lung and other monitoring. She was restarted on the nitric oxide and antibiotics for infection in her trach. Her O2 is coming down, but she still seems a little touchy and needing lots of rest. We are praying that her time on the nitric will be short and that she can get back to normal sweet Eden.

Reagan also had a touchy few days, she had a tummy ache and reflux issues on Friday and wanted to cuddle with her Mom and Dad all day. She was irritable and restless from the pain in her tummy. Her breathing has also been a little harder. We are still walking the fine line between the steroids working and not. Some of her providers feel that she should have a trach while others feel that she's going to grow strong and not need the trach. The waiting is killing us, we really just want answers and her response to weaning her steroids should tell us. We also want to do what's absolutely best for our little girl, so the decision will be hard no matter what. With Eden the decision was very clear- she needed the trach to live, with Reagan it's not so clear.

This week has been challenging again, we so just want to make some forward progress. We continue to depend on God, we know that He is in control and will make everything OK. Scott and I were comforted by a song that we listened to this week by Kerrie Roberts, the chorus says:
'No matter what, I'm gonna love you. No matter what, I'm gonna need you. I know You can find a way to keep me from the pain but if not, if not I'll trust you' (http://www.youtube.com/watch?v=OA3MSqufJP4).
Scott and I are in pain, hurting that our little girls can't be healthy and home with us, but we will continue to trust in God and He will get us through this. Please pray for our little girls this week....

Some fun pictures!

Our days consist of....

Actual Age: 3 months, 2 weeks, 4 days
Adjusted Age: 3 weeks, 6 days

SLEEPING! You'll notice from the girls pictures that they sleep A LOT! This is of course typical newborn (adjusted age) behavior, but also since our girls are healing/regrowing lung tissue they sleep more than the average baby. Some days Scott and I will just sit and watch them sleep. They both love to have their hands near their face and its so adorable to watch them move their hands during sleep. They also work with Occupational Therapy (OT) a few times per week. We have an amazing therapist and she is empowering us to do more things on our own. Eden will work with her 3 days per week! This schedule is fantastic, she will work on limb movements, head control and overall development. Laying on your back after surgery causes stiffness even in little babies so they need help getting loose again. Reagan works with OT on bottling, tummy time and overall development. We are so happy to have our OT to teach us what's best for our babies developmentally.

Reagan breastfeeds once a day and she is doing really well, its such a wonderful bonding time for us- I love it! And I can't wait until we can try with Eden too.

Lastly, we have taken over the place of 'longest in the NICU' this week. Another family was here with their daughter who is waiting for a heart transplant, but they were transferred to the U this week. They are a very sweet family and we hope to stay friends with them. Thank you again for praying for our family. God is good and he is answering prayers.