Tuesday April 2
Lincoln has a number of people he sees for his care.
- The dermatologist
- The physical therapist
- The RN
- The NP
- The Neonatal doctor
- The pediatrician
- The ophthalmologist and the doctor that specializes in his cornea.
On Tuesday we had a visit with all except one.
The physical therapist thinks he is doing great! We are waiting for the skin to shed on his feet so we can check his reflexes there, the skin is so thick that he cant curl his toes. We do soccer kicks with his legs to loosen up the hips and we do stretches with his arms, because of the skin condition its caused him to be tight in some areas. He is really doing great. She explained that because he is a preemie 5 weeks early that you add 5 weeks to his development, for example if a baby is suppose to sit by 6 months then Lincoln should be sitting by 6 months 5 weeks. And depending on what ichthyosis he has will determine if he will have any restriction on movement.
Then the dermatologist who I absolutely LOVE came to talk to me along with everyone else except the pediatrician and the ophthalmologist.
He asked the Neonatal doctor when a good time for Lincoln to go home would be, and she said she was just waiting on him to determine how well his skin was coming along. Apparently Lincoln would have been ready to go home a couple days ago if not for the skin condition. Hes eating like a champ, hes growing, hes self soothing, his O2 levels are good and hes just a happy preemie baby!
Dr. A the dermatologist thinks lincolns skin condition is coming along great.
” Lincoln is improving very well his skin looks like its handling the environment well, lets wean him from 60% to 30% humidity today and see how he does, then we will put him in 0% and see how he does then get him home by SATURDAY.”
My heart dropped, I began to shake and I forced back the tears just enough to look like I was holding it together. As I muted out the next couple conversations the doctors were having, a million things were running through my mind.
How can you possibly send home a 4lb 12oz baby?
His skin hasn’t even shed yet, hes going to be in so much pain.
You initially said 3 weeks, he needs another week to get this layer off.
Ichthyosis, its so rare, they have no idea what they are doing.
Hold it together kaysie.
“Trust in the lord with all your heart, and lean not on your OWN understanding; In all your ways acknowledge HIM, and he shall direct your paths. Proverbs 3:5-6
The tears started to stream down my face.
“Im really excited to bring him home, im happy hes healthy enough to be discharged. It just happened way to fast”
The neonatal doctor began to tell me that this was a normal reaction I was having, and it was time for him to go home.
I called adam with the news and he was just as surprised as I was.
My heart ached for Lincoln as I thought that he wasn’t ready to be home, but I trusted in the Lord that this was his plan.
The dermatologist said he would be back Thursday to reevaluate and make sure his skin was well. Basically if we took him out of the humidifier and his skin began to worsen or dry up then we would put him back in.
Wednesday April 1st
I was feeding Lincoln when the dermatologist came in. Thinking to myself “its not Thursday, what are you doing here?”
Dr. A stopped by because his schedule got busy for thurs. He informed me that Lincoln looks like he is holding up well to the humidity. “Lets drop the humidity to 0% today and move him from an incubator to a crib and hopefully he can go home tomorrow or Friday”
My spirit got crushed.
“The Lord is close to the brokenhearted. He rescues those who are crushed in the spirt.” Psalm 34:18
Hes not ready for this. I went back to my room a mess, I called Adam, he tried to help, hes so sweet in the ways that he nurtures me, but I needed to talk to another mom at that moment and I called my sweet friend and someone I like to call mama crystal, she walked me through my heartache at that moment and reminded me what I have been working on this last month… its okay to be broken. I was stuck in a place, a hard place. Do I stand up to the doctors and say Lincoln isn’t ready for 0% humidity or do I trust in God that this is the way its suppose to happen…
2 min later as I was crying out to him I came across a verse.
“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6
I went and talked with a very special nurse, she agreed that we can keep him in the 30% over night and then we will call Dr.A and see what he says in the morning. Thank you Jesus!!
Just then Adam and his cousins Zeb and Emily came to visit. It was such a blessing to have them come and pray over Lincoln, Lincoln was so content in Zebs hands, hes so tiny and Zeb just held his head in his hand, he spoke truth to Lincoln and prayed the most beautiful, impactful prayer I have ever heard.
I felt at peace to go home for the night.
Thursday April 2
Dr.A called me first thing in the morning and told me that Lincoln would not be going home until he was ready. That Lincoln was going to be the one to tell us when he needed to go home. He found time to come in the NICU to educate the staff on his condition and inform them that Lincoln was ready when he was ready.
Lincolns skin looked amazing that morning. So much that I agreed that he should try the 0% humidity. I was ready for my baby to come home.
He did great on the 0% humidity and we were going to see how he did until Saturday. Just like they had planned.
Friday April 3
We started everything for him to be discharged so that on Saturday it would be a quick.
I was told Lincoln would be able to sleep with me in my room for the night. I was so excited!
It was a pretty mellow day, and I got to join adam and the kids for Good Friday service, it was refreshing.
I came back to my favorite night nurse. I fed Lincoln and began my snuggle time with him, his O2 levels started to drop.
He had to stay in the NICU for the night and be put back on O2.
Saturday April 4
This morning part of his eyelid began to shed, that’s amazing news! that means he will start to shut his eyes!
They like to keep the preemies on O2 and see how they do for 24 hours. We would just have to do a late discharge. He would be sent home with O2
Lincolns coming home…
2 LONG weeks in the NICU and Lincoln is home for Easter.
We feel so blessed to finally have our baby home.
I hope you have a wonderful Easter!
“You are loved more than you will ever know, by someone who died to know you.” Romans 5:8
I seriously cant thank you all enough for the love and support you have showed our family!! The meal train has been such a blessing to my husband as I have been gone and the GOFUNDME site has almost reached its goal. Here is the link if you would like to donate and help us get to our goal. http://www.gofundme.com/love4lincoln?fb_action_ids=10100429954669479&fb_action_types=og.shares&fb_ref=undefined