Our Madelyn - always keeping us on our toes

I'll try to make this as short and simple as I can. Mady's ultrasound confirmed that she does have hemangiomas on her liver. She has 4. One is "sizeable" as the dermatologist worded it. The ultrasound was really hard for me because the tech would tell me nothing, but I saw the count on her monitor go up to 54 pictures, and I knew something wasn't right. Then, she said she had to step out to grab a doctor and my heart was racing. The doctor there didn't feel anything was an emergency and that they would probably want us to get an angiogram scheduled after the results were sent to the pediatrician and dermatologist.

The next morning, the dermatologist called me and said she didn't want to be an alarmist BUT they were scheduling to get us in ASAP for a CTA (CT angiography) at Children's. I had to shower get both girls ready to go, drop Emma at my parents and be at Children's within the hour. The dermatoligist said she hasn't in her 20 years as a doctor, ever seen liver hemangiomas in a child with less than 5 on their skin. She was shocked. The test was done to check her blood flow and to see exactly what we're dealing with. I also asked her about these internal hemangiomas being in other locations. From what I've read, they can be on the GI tract, the brain and the lungs. She said we would deal with the liver first, and that the GI doctor that she was referring us to would most likley test the GI tract via bloodwork and stool sample. She said the lungs are a very low percentage. However, all of this stuff is a very small percentage and Mady is hitting all of it! So, we're going to push for more testing even though we hate to have her go through more.

The CTA was not too bad. She cried when they put in the IV and then again when they put the contrast through the IV. Afterwards, she was handing out smiles left and right. We know nothing yet. We should at least have some preliminary results on Monday.

What does this all mean? Well, from the information I've gathered via quick conversations with the doctors and the internet, it could be something they just keep an eye on OR it could mean she has to start steroid treatment OR it could mean surgery to remove the spots from her liver. Nevertheless, it's very stressful and upsetting for us. The dermatologist was able to get me an appt with the GI doctor for this Wednesday, which means more hours missed at work, but Mady has to come first.

They lost both of their girls.

Syndey and Carynne have now both passed away. I'm sitting here with tear filled eyes not even able to imagine how their parents feel. If you feel like reaching out, even though you don't know them - this is a link to their funeral home and their guest book. I think they may find comfort in knowing how many people were praying for and thinking about them.

Carynne:
http://www.flanner-buchanan.com/obits/obit_guestbook.php?id=5355856

Sydney:
http://www.flanner-buchanan.com/obits/obit_guestbook.php?id=5356124

Some very sad news

If you follow my blog, you've read about a "virtual" friend and her family. If you go to my older posts you can find the full story. They lost one of their little girls yesterday. It happened far quicker than any of us thought. For those of you that donated to this family, thank you so much. The donations have been amazing. My heart goes out to them.

Pics!

Latest on Madelyn

The dermatologist said that in most cases, a liver hemangioma is only present if there are 5 or more hemangiomas on the skin. However, she wants the ultrasound done since the pediatrician felt something odd with her liver. That appt is Thursday. She also gave us the number of a plastic surgeon to see for a consultation regarding having her shoulder hemangioma removed. I couldn't get in for 3 weeks, but I'm going to call Monday and check for cancellations and to stress that she is in pain. The derm doesn't know if the surgeon will want to remove it or not. She's curious about what he'll say. It really hurts her and we can tell she seems to be using that arm a little less and doesn't like to bear weight on it when on her tummy. I'm a little nervous about her liver, but I'm sure all will be fine. They both go back to the NICU the end of March for their 6 month check up and we can't wait to show them off to then nurses that took care of them!

Keeping track of everything?

Thank goodness for this blog. I have such a bad memory. I have NO time to write in their baby books. I started doing it one day and haven't gotten back to it since. I just sat down to try to remember when Emma's eyes changed from blue to hazel. I do realize it's not the end of the world if I don't have everything recorded, but it's fun to remember and pass on to the girls.

A few more pics of Eli Kyle :)