I know it's taken me quite some time to finally write in this, but in all fairness, I've been quite busy! Genevieve Mae was born on the morning of February 8th, 2009, after about 15 hours of labor. After delivery, she was rushed to the NICU to be checked out (they were worried about a respiratory problem)... she ended up healthy in that sense, but they noticed a problem with her skin. They transported her to another nearby hospital and I was transported later. She had many tests done and 3 skin biopsies done. Andy and I were unable to hold her, feed her, or do any of her normal care, as she was in a humidified incubator in the NICU and was at high risk for infected because she had open blisters and skin peeling all over her body. She was born on a Sunday, I was discharged the following Tuesday. On the day of my discharge, we were finally able to hold her and feed her for the first time ourselves. She was wrapped in gauze all over her body like a little mummy, and underneath the gauze was/is a ton of Vaseline and another set of vaseline bandages. The vaseline helps to keep moisture in her body. That Thursday (the 12th), we went down to the hospital to visit her with my cousin and her fiance, and the nurse told us the biopsies came back and that she had a skin condition called Epidermolytic Hyperkeratosis. She didn't know too much about the condition, but told us that Genevieve's dermatologist would most likely call us to set up a meeting the next day. The following morning we met with the Derm., and he explained her condition and what her care would consist of, and gave us the best news we would've heard after all of this... she was coming home! We stayed that night in the NICU with her and did all of her care on our own. We did her bandage changes, fed her, changed her, gave her her medicines... and did wonderfully. The nurses were a great help with it all. Let me just say, bringing her home was the best Valentines Day present we could've asked for.
So that's the quick hospital briefing for you. Many of you already know about the hospital stay.
Now onto how we must care for her and her condition.
We have to do her bandages at home still. So she is still covered in vaseline, vaseline cloth and gauze all over her body from the neck down. We do these twice a day, once in the morning once at night. She hates having her bandages changed. She gets a dose of infants tylenol every 6 hours for the little bit of pain that she is in. She is not able to be bathed like normal babies. We cannot use soap on her, and we have to gently pat her skin with a soft cloth... we cannot rub her with it. We have recently started to simply soak her in the tub... I fill up the bathtub like I would for myself, I sit in the tub and hold her sitting up in my hands and she just sits contently and soaks. We have found this helps get the extra skin and vaseline off her body, and in a way comforts her. I just received a call from her dermatologist today letting me know he sent in a prescription for some antibiotic ointment to use on her new sores and areas that are really raw, so we will start that tonight. She does have an odor to her that unfortunately will never go away. As she gets older there are ways to tone it down though.
Her condition is called Epidermolytic Hyperkeratosis. We havent looked into it too much, we've just been going off what the dermatologist and her pediatrician has told us. The way it's been explained to us is her skin is blistering and peeling right now. Once it gets out of this phase, the new skin will heal. At that time her body will feel as though it's not producing enough skin, and will overproduce skin and in return her body will not be able to shed it fast enough. Her skin will build up and become thick and tough and might also be flakey and itchy. It will be really bad in areas with creases, like her armpits, knees, elbows, etc. Her dermatologist also believes she has the strand that will effect her hands and feet really bad with it too, but we will know for sure once we see a Genetics doctor. Once her new skin heals, her dermatologist will give us the ok to no longer wrap her body. We will then switch to lotions and aquaphor ointment multiple times a day. That will be her routine for her entire life. Her skin will not look normal by any means, but hopefully the lotions will help make her comfortable and not in any pain at that point . Her face will not have the condition, luckily. It is a very rare conditon... something like 1 in 250,000 people have it. It is genetics, and we're not sure where it came from between me and Andy. Both of our families have never seen any skin problems. So as of right now the dermatologist believes that I may have carried half of it, and Andy carried the other half. We have an appointment with a Genetics Doctor in September to figure that out, as well as if Genevieve's children will have this condition, and many other things. We meet with her dermatologist every couple of weeks as well as her normal pediatrician appointments.
How are we handling this...? Pretty well I guess, considering all I keep hearing is that everyone is surprised by how well we are handling it. We dont believe in stressing out over it. You take what youre given. We have a beautiful daughter who may have a skin disease, but she's healthy in every other way. We know that if we stress out about it, she will sense it off of us. When we think of questions, we write them down for her next derm appt. Or if we sense a problem with her skin or her care, we page her derm. We had a very strong relationship before Genevieve, and every day it grows stronger because of Genevieve.
I should be able to update this pretty regularly. I'll post pictures, and updates, and let you know how her doctors appointments go and also about her improvement.
Thanks for all the support everyone has offered. All the kind words and prayers. Thank you.
Genevieve a few hours after being born.
Our little mummy in the NICU
Her skin improvement at 2 weeks old.
@ her cousins birthday party. 2 weeks old. certain clothes hide her bandages well :)
I love my little girl.