Hope, Faith & Love

I recently set up a Facebook page for Gabriella in honor of who she is and in celebration of her 6 month milestone. The cover photo I chose was taken the day we were discharged from the NICU, January 24th, 2014. Which will be exactly 6 months home 2 days from now (which I just realized right now while typing this). That will be a day to celebrate! I was looking at the cover photo and for the first time realized that my husbands wrist band shows clearly in the picture. He has worn that purple band for years for our daughter that was diagnosed with juvenille generalized seizures when she was 9. She just turned 14 and will be seizure free for 2 years come September 3. I just love that this picture portrays Gabby and Johnna's fight. We could never have planned that, especially during that time with Gabby at the NICU. You can read HOPE clearly on the band. I just love that. My hubby isn't taking it off until Johnna is off of her medicine. 

During the time Gabriella was in the NICU God used many people all over the country to pray for us. Family came close by. Help was there for our other 6 children at home which made it easier for John and I to get to the hospital each day. Our church became family to us. They came to Gabby's bedside and prayed with us, meals were planned, food was donated and friends made themselves available to us. Many of the nurses who cared for sweet baby Gabby were sincere and went out of their way for us to give us information or just to let us know they were there if we needed anything. I wish I could remember every nurse's name so I could thank them. From Gabriella's delivery to the Special Care Unit and then the NICU there were many hospital personnel that gave their all. God's hand was directing us even before we realized it. Looking back many things become so much clearer. Prayer continues to carry us as we care daily for little Gabby Grace. Thank you to all who join in praying for the healing of Gabby.

Below is a post that I shared today on FB. If the bracelets are still being sold buy one! If not there are other ways to help The Butterfly Fund by visiting their site. 

Help this organization meet their goal! $9 only.Easy to order and shipping is included!

The Butterfly Fund...all proceeds go to children that suffer from many different health related needs. The RED bead is for EB children, white bead is for children who suffer with a disorder or disease that isn't linked to a specific color. The purple is for children with Epilepsy. I can't wait to receive our bracelets. Two of the beads stand for 2 of my children.

'Butterfly' patient hopes to inspire others

This girl in the following link is an amazing inspiration. I wanted to share her story with you and for Gabby when she is older.

When Gabby was born Epidermylosis Bullosa (EB) was the preliminary diagnosis. Her skin biopsies came back inconclusive. The doctors then consulted a pediatric dermatologist to see her. Her first reaction after assessing Gabby was dystrophic EB. This is why this article caught my eye. I hope you find this inspiring and add her to your prayers.

'Butterfly' patient hopes to inspire others with rare skin-blistering disease | CTV News

Happy 6 Month Birthday!

Happy 6th month birthday to our angel, Gabby Grace. Here we are in the month of July and I still feel like it should be spring starting not summer. Gabby was born in the beginning of January and time has not been my friend. Time. It just keeps slipping away and here we are smack in the heat of the summer. I guess that is because of the long hours caring for Gabby and everyone else with little sleep to go on. In the beginning of this journey with baby Gabby having a rare skin disorder her Daddy and I really didn't know how we were going to get through each day. We left the NICU having just learned how to change Gabby's dressings which, in the beginning, took the nurses 2 hours to change. How in the world was I suppose to do this twice a day with everything else on our plate. God is good. That is all there is to it. By the time Gabby was discharged her skin had healed to the point where her dressings were limited to her limbs and torso. Individually wrapped fingers and toes only when needed. She had come a long way and I kept hoping that she would heal and this nightmare would be behind us. After about three weeks at home, tiring three weeks, it hit me that Gabby wasn't going to heal. Her skin kept blistering, I kept lancing the blisters. Just as soon as we thought she was going to be okay the next day her skin would slip off in different places. I was spending my early mornings, afternoon, and late into the night feeding, changing, dressing/redressing, aquaphoring, & wrapping this little tiny bundle oh so very carefully. She cried a lot. I felt for my other children who needed me and most likely hated to hear her crying. Tylenol was given for her discomfort. Gas drops also were a big help. Despite all that this little one has dealt with she has pulled through and is such a sweetheart. She cries very little these days and began sleeping through the night around 4 months after I started her on rice cereal. That was wonderful! Gabby loves her baths. She can't spend too long in her tub or her skin becomes too soft and fragile. Heat is also an issue for her. I will share in posts to come what we have learned about Gabby's condition and more on how she is developing. It is a journey that is enriching us all.
This little angel has taught me so much in these last 6 months. My faith has grown and prayer is more real to me than ever. Mommy loves you my sweet sugar monkey. (A nickname given to her because of the sweeties in the NICU, sugar water to help calm her and her stockinette dressing that made her look like a sock monkey.)