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.