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.

Eden's beautiful face! and 100 days

Actual Age: 3 months, 1 week
Adjusted Age: 2 weeks, 2 days

Eden has a beautiful face and now we can see ALL of it! She is our little sweet pea and we are so excited for her to make progress with her trach. Her surgery went well today, it really only took 30 minutes which is amazing. She had a super group of MD's and RN's caring for her. Her recovery will be long- at a minimum 10-14 days, she had some damage to her tissues in her trachea from extended use of steroids so this area is very delicate and needs to re-grow new tissues. She will have to be sedated during this time so that she doesn't move around and impede her healing process. We also have to be VERY careful to watch her neck for skin breakdown. She has almost no neck so the trach is resting tightly against her skin. It will be very important to monitor this closely as a skin infection could be very bad. I worry constantly about all of these factors and more.... Please pray that she heals quickly and has no problems with infection. Thank you so much for the phone calls, emails and texts telling us that you were praying for us today. We appreciate all of these prayers and please know that they helped tremendously.

Reagan is slowly being weaned off her steroids and we have to pray that this time they will work and she does not have to be trached also. She is growing and doing well with head control, she LOVES to look around and takes in everything around her! She will be getting a mat for her room so that she can lay on it and do baby things and most importantly developmental activities. Our Neonatologist this week also encouraged me to breastfeed her, just a little bit at the beginning but she said it would be great for her development. I was worried at first because of possible aspiration, but she was very encouraging. Today Reagan breastfed for the first time! It was a great experience for me and she caught on so quickly!! She just naturally knew what to do and as I have heard this isn't the easiest for preemies sometimes. She was so relaxed in my arms and I think for a few moments my worries went away and I felt like a regular Mommy. We will continue to increase her feedings and hopefully move to just breast and bottle and be able to soon remove her feeding tube altogether.

Finally, yep we've been in the NICU for 100 days... honestly we deserve an award. This is the longest, most difficult journey we've ever been on and it's certainly not over yet. Our girls are getting the best possible care, we are so blessed to have Children's Hospital only 22 miles away from home. God is working miracles there, not just for our girls but many other sick babies too. We have become close to a few families here, one that has come and gone, and we started praying for Baby L, Baby B, Baby N, etc. but our prayers got really long. So now we ask God to keep his healing hands on ALL of the babies in the NICU and to comfort their families. If your children are healthy you are amazingly blessed by God, hold your little one's tight tonight and give them an extra kiss because there are so many at Children's that can't do that. Eden and Reagan also have MD's and RN's that care for them so much that they pray for them at night, think about them on the weekends, and even stop by when they're not assigned to our girls. These MD's and RN's carry us through the hard days, they will always hold a special place in our hearts.

So many caring people

Actual Age: 3 months, 4 days
Adjusted Age: 1 week, 6 days

The tears are finally starting to subside, I can get through a few hours without thinking about how our lives will change on Tuesday, but tonight Scott and I were moved to tears reading all of the comments from friends, family and most touching from those who have no idea who we are and those who we have never met. You have no idea how precious it is to read your words of encouragement and to know that each and every one of you is praying for us. THANK YOU!!! God is keeping us strong and opening our hearts to remember that He is in control of this situation. We are focusing on the fact that the trach is the best option for Eden and she will get through this. Reagan also is improving and she too will get through this.
I'm not sure if we will forget these heartbreaking days in the NICU but when our little girls are running through the house with sticky fingers or jumping into the pool before we are ready with open arms we will hopefully be able to forget.

Both girls got baths today, so we have cuddly, fresh smelling babies! Take a look at the pictures of both girls.... did I actually give birth to them- I'm not really sure because they both look like their Dad! They truly have the best Dad in the world- he would move the moon and the stars to make them better if he could.

Decisions

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

Eden will be having tracheostomy surgery on Tuesday. We are now realizing that this is the best option for her to have a long, healthy life. We are terrified of what this will bring, but we know that it's what needs to be done. She will also be much more comfortable as she hates have the ventilator tube in her throat. God has lead us to this decision with the help of some amazing MD's and RN's. We have chosen the wait and see path for Reagan (this path has a time limit though). So we continue to pray that she will improve and will not have to be trached as well. Thank you for praying for us.

We never thought

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

We never thought we'd being dealing with what we are right now. We never thought we'd hear the words we heard tonight. We assumed that after a few months our family would be home and the girls would be healthy with all of this behind them. We had a care conference with a Pulmonologist and our Neonatologist tonight. We are currently dealing with the heartbreaking decision of doing tracheostomies for both girls. For Eden this is a matter of life or death, we honestly thought she was "out of the woods" but after learning how badly chronic lung disease can be in a baby with IUGR we realize that this is our only option for her. We were 100% caught off guard hearing that Reagan may have to be trached as well. We probably were ignoring what we knew in our hearts- that the steroids are not working and she is still requiring too much 02 to breath on her own. The trach option is something that will have to be for approximately 1-2 years. So right now we go home to decide what to do (even though we already know what we need to do).

Please know that when you ask us if we're OK- the answer is NO. We are having trouble understanding why... why is this happening to our beautiful innocent girls, why is this happening to us. Our faith is wearing thin and we wonder sometimes if God is hearing our prayers. We don't feel like we can deal with this and our hearts are broken. I don't have anymore words to write so I will close here, but please just pray for us. Thank you.