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.

Results

2 months, 4 weeks, 1 day
Adjusted Age: 6 days

Eden had her echocardiogram today which showed that she still has pulmonary hypertension (for an explanation of PH in preemies, see this link http://nicu-info.blogspot.com/2009/07/nicu-persistent-pulmonary-hypertension.html ). This is very serious and we are worried again. A Pulmonologist will see her this week and we will determine a course of action. PLEASE PLEASE pray that Eden's PH will resolve itself without having a trach. We truly need a miracle right now. Thank you for all the prayers.

Some other fun pictures

Happy Halloween!

2 months, 4 weeks
Adjusted Age: 6 days

Let me introduce future Neonatologists, Drs. Reagan and Eden Hedin! However it might be slightly confusing to their patients because they're identical twins... The NICU can be draining and emotionally challenging so we decided to have some fun today getting the girls dressed in their Halloween costumes. Eden was a trooper and did fine with hers, Reagan cried almost the entire time, however we found out later that was because she had gas. The girls were so cute and had a lot of NICU staff visitors admiring their 'Build-a-Bear' costumes. A special thank you to RN's L and S for making it fun for us. Scott and I enjoyed smiling and laughing at our cute little angels versus dealing with the stress and anxiety that occurs on a daily basis.

Our girls have come to a standstill with their respiratory status. This is especially frustrating and heartbreaking for Scott and I. Eden is still on the ventilator and doing well, but she has an echocardiogram scheduled for Monday to check for the pulmonary hypertension that they found on the last one. If she still has pulmonary hypertension we will have to consult a Pulmonologist about a tracheostomy (trach) to aid in pulmonary support for her. We want so much for her to be a typical baby and it breaks our hearts to even think about this as an option. We are PRAYING so hard that God will heal her lungs and she will not have to get the trach. Reagan is still breathing too fast and her Neo has decided to start her on another round of steroids. We are praying that this will work and that her lungs can heal as well.

We need lots of prayer this week, PLEASE PLEASE pray that Eden's echo will not show any signs of pulmonary hypertension and that Reagan's next round of steroids will help heal her lungs. These little girls need new lung tissue growth so badly to be able to make any progress. Thank you to everyone for praying for us and a special thank you to our EBC friends who provided us with meals last week. It was so wonderful to have a hot meal when we were too tired to prepare anything.