The reason I wanted to start writing at all is because I needed to heal, even if no one reads it, being able to share my story has helped so much. I think if we can be courageous and vulnerable just enough to share our deepest hurts, mistakes, joys, it gives way for others to heal and courage to own their story too.
The labor and birth of Ivy was hard, of course, but beautiful and for a different post in the future. It’s what happened after she arrived that still months later has a grip on my heart.
Once she was placed on my chest I was in my own mama bubble of complete joy and I remember most of all how soft and warm she was against my chest, not noticing the bustle and panic around me in the room. Something was wrong. My doctor immediately called in the pediatrician on call because Ivy was quite swollen & there was thick white skin around her mouth, eyes and ears that wouldn’t wipe away… They had an idea of what could be the cause but didn’t want to say until they knew for sure.
Having been awake for 48 hours I’ve never been more exhausted and the words, “we have to take her away” couldn’t register. I felt void of emotion, I wanted to go with her, I didn’t understand.
Billy followed our girl in the ambulance to a near by town and stayed with her all night. That next morning after some rest all the sorrow hit me at once. I needed to get out of here. I needed to be with my baby.
I tried to get out of the hospital as soon as i could to go be by her side.
All I wanted to do was nurse her.
This day was so hard. She was in a humidifier, covered in aquaphor and wrapped in plastic with a feeding tube. Its just not what you picture when you are expecting to take your baby home the next day and wake up with them by your side. It was so painful.
Once I arrived at the Nicu we started getting some answers. They said she had ichthyosis. She looked so perfect to me. I refused to believe there was something wrong. I was finally able to nurse her for the first time and it was the most amazing moment.
There was no room for us to sleep with her this night so we had to stay down the street. Being away another night from her was sorrow like I’ve never felt. It was constant and uncontrollable weeping. The next day we were moved to another room where we could spend the night with her, it was such a relief and joy to finally be by her side. Within a few days her skin started peeling away. We spent all day covering her with aquaphor and constant prayer.
She was born with a very mild collodion membrane. It was very thin ( they range in severity). With this skin condition, once the membrane peels away, it reveals the true skin underneath which is typically fish like scales, sometimes brown, or white flaking. It’s an overproduction of skin, so the old skin is constantly flaking off.
It was a cloud of confusion and the kind of worry that makes you shake. There were no doctors who had ever seen this condition in person, so we were communicating with a dermatologist in Portland for any answers we could get. We googled the condition which wasn’t the best idea and the images filled us with so much anxiety, we were sick with worry and I don’t think we have ever cried so much. We were a mess, but we had each other.
We stayed in here a week and it was the longest week of our life. After several days we started seeing her true skin underneath as the membrane peeled away. There were no scales!
Bringing our girl home. There has never been a sweeter moment in my life than waking up home, in our bed as a family that morning. For the first time since she was born I felt peace and so much joy!
After a few weeks her skin was done peeling and miraculously, there are no scales still. She has mild dry skin, but nothing a little lotion can’t fix! It’s truly a miracle and a day doesn’t go by where i don’t praise the Lord for our beautiful girl.
we got the results back from her saliva dna test which showed she has self healing ichthyosis! I was shaking on the phone waiting for the dr to share this news and we are over the moon! There’s a lot of scientific gene talk with this condition but basically…
Me and Billy both happen to have this super rare recessive gene so the chances of future children having this is one and four, but the good news is that even if they do get this condition it would be the same severity which is wonderful because it’s so mild and manageable that I forget most days she has a condition at all.
*another update- One more reason I wanted to share this was because when we were in that dark place of not knowing what was happening with her skin and being so sick with worry and sad for our girl, we were researching tirelessly for answers and how our lives would be so different now, caring for this condition. We couldn’t find any cases of self healing ichthyosis so I wanted to share for that one person who might see this and give them comfort and hope.
What we have found that works for her skin…
She is one and a half now and we’ve started using vegetable glycerin on her skin. This stuff is like a miracle. Her dryness is very mild but applying this gives her the smoothest baby soft skin that lasts for a couple days:) It’s kind of thick and sticky, so every days we use Alba botanica very emollient Maximum all over her body and it’s just easier to use and the only natural thing we have found that works for hours. Her facial skin reacts to everything, even coconut oil, causing perioral dermatitis. So sometimes we have to lay off the lotion and use aloe vera with vitamin E oil.