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.

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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.

Lots going on this week

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

We are coping better with life this week. We have both been very busy with work and being at the NICU that we haven't had too much time to be emotional. Both girls are maintaining status quo right now, which is a really good thing.

Eden is recovering from surgery well, she is no longer sedated so she is much more alert and interactive. Her RN put the same mobile that Reagan has on her crib and she loves to watch the colorful fish above her head. She had a trach change today, her ENT took out the temporary one and put in a flexi-trach. Meaning that she can move around a little more and we don't have to worry as much because its flexible (hence the name). Her ENT wanted me to stand right next to him while he did the trach change so I could see what her surgery site looked like and how he did the change... it was fine but really your tiny baby isn't supposed to have a hole in her neck. I just have to remind myself that this is truly the best option for her and it will improve her respiratory status so much. We will be taking a 8 hour trach class in a few weeks to learn how to care for Eden and her trach. She hit 5 lbs this week!

We are still playing the wait and see game with Reagan to determine if her respiratory status is improving significantly enough even while weaning her steroids. She gained 7 oz. in one week and is now at 7 lbs, 7 oz. Growth is truly her best medicine and we pray everyday that she continues to grow and her lungs improve at the same time. Reagan had her final eye exam today- her eyes are mature and clear of ROP!!! We are thrilled to have good news. God has answered our prayers!! She is interacting a lot with us and we are working on developmental activities with her. She is so strong and holds her head up very well, she is also smiling more!

Finally, both girls got their newborn shots today... no fun for them. The RN's were wondering how we would handle it and I explained that its never easy to see your child cry but we have seen WAY worse with our girls and something minor like shots is no big deal.

Thank you for your prayers this week, we are so blessed to have so many people praying for us everyday.

Healing process

Actual Age: 3 months, 1 week, 5 days
Adjusted Age: 3 weeks

Eden is healing fairly well, she did have a positive culture for an infection but it was caught really early and she is being treated with antibiotics. She is no longer needing the Morphine so she's much more alert. This is a good thing and a bad thing-we LOVE seeing her eyes open and her responding to us, sucking her pacifier, following our voices and just being so adorable. But on the other hand, she is still healing so she can't move her head/neck too much and especially not pull on her trach tube. We are anxious for her to heal quickly so that we can cuddle her in our arms again! She hit 5lbs this week!! Growing is the best medicine for these girls- it will help heal their lungs.

Reagan has spent the last 3 days sleeping more than normal, I hope that she is having a growth spurt. She has reflux and her MD is pretty conservative so we are monitoring it closely. We are still watching her breathing and lungs very closely.

Scott and I are also going through a healing process... grieving the "typical" baby activities that we're missing out on and the major change that has impacted our lives for the next two years (Eden's trach). But this week I was touched deeply by a friend reaching out with kind words and a relevant verse from James 1:12, "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."

Dad's Turn

I thought I would give writing a blog a shot, although it won’t be even remotely close to as good as Amanda’s, so here it goes.

Today, November 11, 2010, is day 102 of being a father to the two best little girls I could ever ask for Reagan Avery and Eden Bryn. I am not going to recap the entire road just a few highlights.

I remember the day that we found out that Amanda was pregnant, the excitement, nervousness, overall joy! The next step was finding out that we were having twins, I was in shock. The thought of jumping into parenthood with two newborns was pretty overwhelming but I was up for that duty. My entire world was turned completely upside while the pregnancy progressed as most of you know. Just before the start of Memorial Day weekend and the summer, Amanda was told she had to go on bed rest for the safety of our girls, my biggest fan wasn’t going to be at any of my races but I was fine with that. After five weeks of bed rest at home Amanda was admitted to the hospital for the remainder of pregnancy. Four weeks of hospital food for Amanda, one parking ticket for me and enjoying our five year anniversary with take out. On August 2nd, I stopped by the hospital to hang out with Amanda in between appointments and to watch a movie (Hot Tub Time Machine, don’t waste your time). We didn’t even get through the opening credits and the doctor walked in, today was the day. This was not part of the plan, I always pictured us at home and her waking me up in the middle of night with “IT’S TIME” alert, but this wasn’t the case. I made all of the appropriate phone calls and Facebook posts to get ready. First was Reagan, so little at 2 lbs. 5 oz. but still so precious. Next was Eden, the first thing I said to Amanda was that she was bigger than we thought at 1 lb, ½ oz. I bounced back and forth from the room with Amanda to next door with a team of nurses and doctors for each girl taking photos, giving updates, trying to process all of the information. I made so many trips between Children’s NICU and Abbott that I figured that I actually ran about 12 miles that night, looks like I got my workout in for that day.

Over the next 100+ very long days I have prayed, laughed, cried, had sleepless nights, questioned why, cried some more, got angry, felt alone, been on top of the world, questioned everything, learned way more than I ever thought necessary, tried to answer why, grown, loved, and been loved. Right now I am happier and sadder than I have ever been because I have the strongest and most caring wife and mother ever and I also have the littlest, cutest and strongest two little girls ever.
Thank you everyone from the bottom of my heart for all the prayers, well wishes and consistent thoughts for my family. Before we know it this will all be a memory and a very short chapter in Reagan and Eden’s very long lives. Thanks again for helping us all on this journey. I love you all very much.