Scary scary week

First- please note I posted a separate post with lots of pictures about 2 minutes ago, so directly below this one. It just seemed too much to put all of it together.

In the past month or so I have noticed something a little off about Ivy's eye- her eyelid seemed to hood over the inner corner of her right eye. She had a cold so I thought it was a sinus thing, then I thought a tear duct thing, but to be honest it was so minor that I know it crossed my mind, but I was not thinking about it. Then I looked at some pictures from Easter and really saw that the shape of her right eye seemed asymmetrical and it bothered me. Upon looking at her eye and feeling around I felt a small lump. Again I assumed it was a sinus or tear duct, but it bugged me enough that I took some pictures and emailed our pediatrician. Her 2 month well visit was scheduled for a week later- 5/5- so we were going to talk about it then.

Pictures- you would never notice anything weird about her eye- even if you look hard, you have to catch it the right way.




However if you are really looking- and I took pictures trying to capture the bump- you can see what I am talking about above the inner corner of HER right eye. This first picture makes it look huge- but obviously seeing the prior pics it is not this big at all.




We went to the dr for her appt and he looked, wasn't sure what it was, but figured tear duct. By some sort of divine intervention, the child he was seeing after us had a mom who was a pediatric opthalmologist- so she took a peek. She told us she thought it was a hemangioma and to go to CHOP (children's Hospital of Pennsylvania)

So on Monday- 5/9- we went to the head of Opthalmology who is also an oculoplast (eye plastic surgeon).


They took a look, took some pictures, and gave us some ideas for what it could be.
1- A dermoid cyst- suregery required but not a bad thing besides that
2- A Capillary Hemangioma- a bunch of blood vessels together. Not usually a serious health risk, goes away on its own, but due to the location by her eye a risk to her vision- could cause blindess or vision loss. There are treatments, but "none are great" in the words of the opth.
3- Cancer. It is hard for me to even type this option out without wanting to vomit. However this is a very, very, small possibility as they said she isn't in the right age range and really felt it was #1 or 2
4- Her brain poking through a hole in the skull- requiring brain surgery


After all this info they told us we could do an MRI in a month or two to figure it out unless we notice rapid growth- they said watching what it does will tell us more about what it is. Eric and I said no way are we waiting for 2 months after hearing those possibilities- so we scheduled an MRI immediately.


Wednesday 5/11 was the MRI. It was horrible- but good all at once. It was just a sucktastic day all around, but for what it was- the day went really really well.
Because Ivy would have to be sedated for the MRI- we had to cut off her food after 10am. The MRI was supposed to be 2pm, but they didn't take her until 3:10. That is a LONG LONG time to deprive an infant of food. She slept a lot of it, had a meltdown, then got her IV of fluids which made the meltdown crazier. This was actually a good bad thing b/c she passed out sleeping from being so upset and slept until they sedated her.
Fortunately the recovery from sedation seems to be sleep- that's pretty easy, and a little extra fussiness. One recommendation I do have- if you are a nursing mom and ever have to go through something like this, bring a bottle! The sedation makes it hard for them to latch so she was starving when she came too- but too floppy to get a good latch. Fortunately I had pumped while she was in and they gave me a nipple for the medela bottle- she downed 4 oz in under 10 mins then passed promptly out.

Some may think it is odd I took pictures, but it was advice from a friend and I am so glad that I have these to help me appreciate my kid's health.

She got to wear a purple hospital gown with spaceships on it! (and morphed into a toddler just for this picture?)


When she first woke from her nap she was happy as can be.




They put these heat packs on all her limbs to help her veins show so the IV administration would go smoothly


Then there is a lack of pictures b/c it was a lot of screaming of hunger and pain and fear while she was hungry and got the IV inserted into her little hand.

After getting her calmed down- can you tell I was a bit upset as well? Most horrible feeling to have your kid screaming in fear & hunger and watch her being pinned down (gently as possible) for the IV




Lastly- my little baby all sedated and hooked up to machines



Groggily waking up after the MRI

Thursday I called and left a message in hopes of finding out news earlier than our follow up appt for next monday.
The Dr called- it is a cavernous capillary hemangioma. That means it is a cluster of blood vessels that will grow rapidly but has no harmful effects and goes away on its own. The downside is she may have a large bump for a year or two, but over the other options- we will take it. Apparently capillary hemangiomas are the most common childhood tumor (yes my baby technically has a tumor). They occur in 10% of all births, cause is unknown, and white females are effected most often.

Although usually left untreated to go away on its own, based on the CH's location by her eye, we do have to treat it. If it grows too large it could impede her vision development and she could suffer vision loss. Right now it is not large enough to do so- but we are going to treat it in hopes it does not get any bigger.
I am working on getting an appointment with a dermatologist at CHOP. Our opthalmologist has to clear the way though because pediatric dermatologists are apparently in high demand- I was told they have no appointments for new patients left at all in 2011. We are in a time crunch with this though, not too much of one- but we can't wait that long and let it grow. So hopefully our dr can get us in with the derms. The course of treatment they think we are going to go with is to put her on propanalol- a beta blocker (high Blood Pressure med). We will have to stay in the hospital for a day or two just to make sure the drug has no effect on her vascular system, and proceed from there.
We don't have more details about it- just this brief overview- but are super super happy that it is a minor thing that we can easily address and that surgery is not needed!

I cannot tell you how scared I was over this past week. Imagining the worst, crying randomly from doing so, worrying, blaming myself, staring at her to see if I could see it growing, ughhh. Thanks for all the thoughts and prayers we have received- I truly appreciate it