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.
Amanda,
ReplyDeleteWhat a beautiful face indeed!! Such gorgeous girls! I have been following your blog and praying for Reagan and Eden daily. (I was connected through the MVMOM multiples site)
Please know you are lifted up in thoughts and prayer CONSTANTLY! (even by those who you do not know personally!)
Continued prayers and love to you, your husband and those stunning baby girls!
Alison
Yes, two beautiful faces. And you are right, they do look just like their Daddy! I am so happy to hear that Eden's surgery went well, and I will pray for a strong, speedy recovery.
ReplyDeleteCelia
I've been following your site for some time - I found the link somewhere among other blogs or message boards, I can't even remember where now! I will be continuing to pray for your beautiful baby girls - what little miracles they are! I will continue to pray that God will watch over these little ones and help them grow through all the obstacles that may face them.
ReplyDeleteSo glad Eden's surgery went well! Praying that Reagan continues to get stronger and that you are able to continue breastfeeding her. What a bonding time!
ReplyDeleteso glad to hear Eden's surgery went well. The girls are absolutely beautiful and we continue to pray for your family.
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ReplyDeleteAlso I am so glad you were able to breastfeed Reagan. It is such an amazing experience and I hope it continues to go well for you.
ReplyDeleteAmanda, I'm so happy you updated on Eden's surgery and all went well. I will continue to ask God that he gives you, Scott and your darling girls strength and encouragement. You are one amazing Mom!
ReplyDeleteBeautiful face! I am so glad the surgery went well and you are able to breastfeed Regan. When my babies were in the NICU that was a rewarding experience for me and made me feel useful.
ReplyDeleteI can't believe how much both of the girls have grown and developed over the last 2 months!! Your girls are so beautiful! I am so happy the surgery went well and will continue to pray for healing. What a special time you got to have with Reagan, you are the best parents these girls could ever have! We love you and pray for you every day.
ReplyDeleteSo glad to hear surgery went well and also that you were able to breastfeed reagan! continued prayers. <3
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