Every day this week I have tried to write this blog. I think today my heart is finally ready to share about our little Lincoln.
Our sweet number 3 was born on March 21 at 12:59.
His birth weight was 4lbs 13oz and he was 17.5 in long.
The doctors had informed us that Lincoln has a skin condition.
It may be perhaps the most anguishing experience you will ever know. Your baby has a skin disorder called ichthyosis. The excitement you anticipate at the birth of your child has been tempered by fear and pain; the joy has been diluted by tears. It’s okay to cry, but remember this….life gets better. – first skin foundation
Short version of Ichthyosis- family of genetic skin disorders characterized by dry, scaling skin that is thickened. If you would like to research it this website in my opinion has the best information there is.
When Lincoln turns 2 months old we will start biopsies to find out which genetic strain of ichthyosis he has. He does NOT have harlequin ichythyosis.
Some children are born with ichthyosis (lamellar, CIE, Netherton syndrome, and harlequin ichthyosis) are born covered in a collodion (co-load-ee-un) membrane: a tight, shiny shell of skin that resembles plastic wrap. The collodion is a sheet of skin cells that failed to shed while the baby was growing in the uterus. The tightness of this membrane may distort the baby’s facial features and may restrict his or her movements. The membrane will crack and peel off over the course of several weeks. The cracking and peeling of the membrane, increases the risk of infection from bacteria and viruses. The nature of the baby’s skin also makes it hard for him or her to hold moisture in their skin, putting them at risk for complications such as dehydration, electrolyte imbalance, and body temperature instability. – first skin foundation
As of right now we start the day with a tube of Vaseline all over his body, we then wrap his stomach and back with gauze that has been soaked in vaseline, we do the normal- change his diaper, check his temp, nurse then bottle feed him. He has to have a thick eye ointment in his eyes every hour because the collodion around his eyes has not shed causing his eyes to be open 24/7, his eye doctor visits him every other day to make sure his cornea hasn’t been scratched. We have PT OT every day to make sure he’s moving his body well with the restriction of the skin.
I can go on and on about his condition… but instead I want to share with you the impact Lincoln has had on me, Adam and everyone around him!
My second son, underneath that hard skin he looks a lot like my first son. He has a wonder in his eyes that im not able to describe, he snuggles into my chest like it’s the only place he wants to be, he holds tight to my finger not ever wanting to let go. He has a spirit about him that I can’t understand- he is so full of life. All the nurses call him a fighter, that he surpasses their expectations everyday.
“Lincoln has shown me strength that I thought I never had. The way he looks into my eyes warms my heart to an extent that I cant explain. He has touched my life and shown me that God is in control and His mercy and love is all that matter. Lincoln brings me this warm and comfort that surrounds my heart. I love that little gentle spirit so much and I am so thankful for him being as strong as he is and being my son. I was scared at first because I wasn’t sure if I could handle this, but seeing this little boy fight as hard as he has told me he knew I was there fighting for him too. I know Lincoln sees me and knows when I am there and I love that.”- adam
“Lincoln and I spent time praying the night before I left and our prayers were answered. The Holy Spirit is moving in him kaysie He is special not for his skin and not for his condition but for his spirit. I felt it when I touched him I felt it the first time I met you and Adam.”-Shelby lincolns night nurse.
Sweet little Lincoln James- March 21 2015
Your arrival into this world has already been such a blessing to so many. As the entrance of a king with many trumpets blowing did you arrive with so many praying.
Every breath that you take and each step that you will one day begin to make are forever held in His hands. You have been truly blessed and purposed by God. His hand is upon you.
We will always be here for you. Surrounding you in our love and prayers. We rejoice and give praises to God for your life and all that he has in store for you!
“For I know the plans that I have for you,” declares the Lord, “plans for welfare and not for calamity to give you a future and hope.” Jeremiah 29:11
May your life always reflect the beauty of our lord!
Love to you, Nana and Papa
The kids got to come see lincon for the first time! There is still a flu restriction so anyone 18 and under cant come in the NICU.
This last week has been a roller coaster for Adam and I. We have been tested to our limits causing us to be draw to closer to God. He loves us so so so much!
There were times where I was feeling down, fighting back the constant tears. People often say “God wont give you anything you cant handle” I think that’s a lie. He gives you more than you can handle… why? So that you will go to him in your hurt, you will cry out to him, you need him.
Thank you to everyone who has put there lives on hold to be there for us.
Kema has been watching my other babies that I miss dearly, she has given them all her love just as I would and she has made this process slightly easier as I board at the hospital. I know my children are getting cared for and loved and its so comforting to not have to worry about them. Zion told me with such cheer in his voice “ Nana is having soooo many sleep overs with us!”
I appreciate all the kind words that you have all sent me and adam, they really do cheer us up and I truly believe God is speaking through you as you send us your kind words. Every single text I have received , ive needed it in that moment to help get me by.
“praying blessings over you that you would rest well tonight. Praying for quick and complete healing for you so that you can be emotionally and physically present for your family. I am praying over Lincoln that God would show up and show off in restoring lincolns skin, that he would be completely free of pain. Rest, you are loved beyond words and you are being covered in prayer.” –mama crystal
We are so blessed to have an amazing nurse named Mary, she completely goes out of her way when she is caring for Lincoln, she has the heart of a lion and the touch of an angel. She has somewhat become another partner in this journey, she is not only lincolns nurse but she is also our friend. I look at her as a warrior of love fighting alongside Lincoln. Thank you Mary.
- Lincoln to stay comfortable as this layer of skin is sloughing off
- for the nurses to have knowledge when caring for him
- no skin infection as that is common in this stage
- pray for kema as she cares for our children in the day, I mean they are toddlers and toddlers are hard and exhausting!
- for Adam to have a calm heart as he works all day and juggles home life while trying to visit Lincoln and I.
- For me to trust God in every single aspect of this, my thoughts tend to wonder and my heart starts to ache.
- for me to stay strong as I miss my kids with my whole heart, and for them to know that mommy loves them even though im not there.
Thank you to the families that have generously donated to our GoFund account, the response that we have had on there has been overwhelming! If you would like to help out in that way you can do so here:http://www.gofundme.com/love4lincoln?fb_action_ids=10100429954669479&fb_action_types=og.shares&fb_ref=undefined
Another way you could help is to sign up to bring a meal for my family: https://www.mealtrain.com/invitation/Default.aspx?id=m3nk7pbjw3kt
God Bless you all!
off to the NICU to feed and spend time with my little Lincoln!