Sorry it has taken so long to update since Hope's dermatology appointment. That trip to Pittsburgh wears me out and sweet Hope seems to be opposed to sleeping when the rest of the world sleeps so I have been napping every chance I get.
Anyway, there isn't much to update at the moment. The biopsy results could take up to another week. She had her little stitch removed and her feet are actually looking pretty darn good. She has a couple of new marks on her leg, not blisters, more like scratches, but they seem to be healing quickly without bandaging. There has been ONE new blister that appeared on her finger the other day. We drained it and you wouldn't even be able to tell where it is now. SO that is good. She is a good healer. The pediatric dermatologists are pretty sure she has some form of Epidermolysis Bullosa, but cannot confirm anything without the biopsy results. They feel at this time that if she does have it that it is likely a more mild case as she hasn't developed many new blisters despite us handling her like a typical newborn, and she is wearing regular clothes and they are not irritating her.
I have to say that when the doctors mentioned EB, I was angry. Isaac was tested for that as he had blisters at birth also. His case was worse, but his biopsy came back negative. I feel like through all the testing we have done, all we have gotten is misinformation. We were initially told that Isaac's issues stemmed from an infection he contracted inutero and that we would not have to worry about a recurrance, that was until Asher came and then suddenly it might be genetic. Now this. We were told he did NOT have EB and that we did not need to worry about that and now this. I have spent the past few weeks trying to sort my feelings out. Mainly I have been terrified. When you google Epidermolysis Bullosa, the information you get is not encouraging, in fact most if it is really frightening.
Our pediatric dermatologists have assured us that we should not panic just yet, as we do not know for sure if that is what we are dealing with and if it is, that there are MANY different types ranging from mild, where you would likely not even know a person had it to severe, which is what I was seeing each time I typed the condition into my search engine. There are also forms that seem to nearly disappear within the first year of life. So only time will tell.
That said, we are realizing that no matter what it is that Hope has, she is amazing, and she does have some special needs. We thought we were TOTALLY prepared for her and as it turns out we are not. This is where I am asking for your advice. There are a few things we need to get for Hope and I am a research it until I am blue in the face before buying it kind of girl. The thing is I don't have the time to research these days and so I am asking for your recommendations.
First, Hope loves to be held and close to us and I am thinking if I am ever going to get a thing done I am going to have to invest in a sling. I have a Baby Bjorn which I used with Ben and loved, and I have a Maya Wrap that an awesome friend loaned me, and I love, but I am thinking a sling might also be handy for her. So, mamas, tell me if you have a sling and if you love it and what kind it is!
Second, we had already planned on cloth diapering Hope, we have purchased an assortment of different products and have had a few generously given to us, but my head is spinning. I would love any cloth diapering advice and tips you all have as I have not done this before. We are going to go ahead and get some for her for now, which we hadn't done because we had disposables, but we are afraid the disposables might rub on her skin a bit too much.
Third, clothing...as you have seen in the picture of her closet, she has quite the wardrobe, but for now we are trying to keep her hands and feet covered to protect the current wounds and prevent new ones. I am having trouble finding hand mits for her that don't have harsh elastic around the wrist. We have been keeping her in newborn Carter's sleepers with the fold over mits, but she is quickly outgrowing them. So, do any of you know of where I can get some super soft no scratch mits for her little hands?
Fourth, she seems to be having a little trouble with reflux. None of my other children ever spit up and she does. I am breastfeeding and I DO have a strong let down reflex so I know she is gulping to keep up especially at first so we are working with that, it seems to help if we just burp her often and keep her upright after she eats. None of it seems to bother her at all she is a pretty happy baby and is gaining weight so the doctor is not worried yet, especially since she doesn't resist feedings at all. But it worries me and I would love any advice from seasoned moms I could get!
Ok, well I need to get my lasagna into the oven and make a salad with the boys. Please feel free to leave your advice in the comment section or email me at email@example.com!
PS If you have an extra moment, stop on by my friend Angie's blog and check out her latest post, it is pretty awesome and a beautiful testimony to God's good plan.
4 days ago