Charlotte Ann

This little girl has rocked our world since the day we found out I was pregnant. She was a very happy surprise, but a very big surprise :-) Just for those that don't know, we found out around 18 weeks that she had some kind of problem going on in her abdomen. Between her being a girl and having more organs than a boy and the fact that they were taking pictures of her through me, they couldn't tell us for sure what the problem was. They decided to do an MRI while I was still pregnant and started thinking it was her lymphatic system. After she was born, on January 7, they took her to the NICU and started running some tests to try and figure out exactly what was wrong and what they needed to do about it. They decided that she needed to go to Nemours Hospital in Orlando, FL for an interventional radiology treatment. We got to Nemours on January 13 and were given a pretty grim outlook. This mass had totally taken over her abdomen and was surrounding all of her organs. The surgeon was amazed that she was able to eat, pee, and poop. They decided that on January 14, she would undergo an upper and lower endoscopy, cystoscopy with retrograde pyelogram, vaginoscopy, drainage of the mass...as much as possible..., and injection of the mass...as much as possible...to decrease the size. We were told they probably wouldn't be able to treat much of it with this first procedure and they were expecting extensive organ involvement. We were terrified for what this would mean for our precious baby girl and, as parents, just wanting to do anything to make sure she doesn't suffer! They were anticipating a 2-3 week hospital stay and 3 procedures, 3 days in a row. They did the first bunch of procedures, and there were 5 specialties in the OR. Each specialty had set low expectations for what they would be able to see and do and every single one said that it was easier than they expected and they were able to do more than they expected. They did find some involvement with the intestines, but every other organ was either not affected or so minimally affected, no intervention is expected to be needed. The main surgeon, the interventional radiologist, was able to shrink almost the entire mass, and get almost the entire mass medicated with one injection. All of the cysts were communicating...or open to each other...so the medicine kept flowing from one to the next...extremely good results. They left the breathing tube in as they were planning another procedure this morning, but she decided around 2 am that she didn't need it, so she shook her head so violently, it came out...that's my girl lol! She did fine without it, so they were able to leave it out. This morning, they took her for the second procedure, and her organs had already moved to their correct location. Her intestines were already dilated...they were extremely compressed from the mass...and everything had shifted. She flew through like a champ and was able to come back to her room without a breathing tube. As much as it broke our hearts, we had to leave her there and come home to take care of some things. Even better news though, is that instead of a 2-3+ week hospital stay, she's expected to be able to come home mid week next week. God has certainly answered prayers and is amazing a lot of doctors and nurses at that hospital! She still has one procedure tomorrow afternoon, and then she'll be done for a few months. We're looking at a marathon, as the surgeon called it. We'll go back in about 6 weeks from when she's discharged for her to have time for these treatments to have their full effect and come up with a game plan for future treatments. We're looking at a minimum of 2 years of treatments and at 2 years, she'll be old enough for them to better evaluate the intestinal part. For now, she'll have to be on a high fat, high protein diet as this mass steals these nutrients from her intestines. She should have no long term problems or immune system problems. The surgeon is a part of research studies for this condition and said he believes that within 5 years, there will be an oral medication that she can use to treat any flares and keep things under control. God definitely had us in Jacksonville, and close to Orlando for a reason. This surgeon is one of only 2 in the country that deals with this and the other is in Boston. This has been a whirlwind of emotions and having to drop everything and leave with very little notice. Please continue to pray for us and especially our little rock star Charlotte! Anabeth can't wait to meet her little sister and I can't be happier that it's going to be sooner than we expected! We appreciate all of the thoughts and prayers and couldn't have made it through without the support of our family and friends! It's been a scary ride since we found out she had a problem and we're just so happy that even though it's going to be a long journey, we're at the right place and they caught it while I was pregnant so we were able to get her treatment started so soon after she was born. I'll continue to update you guys as we learn anymore. Thank you all again for the thoughts, prayers, calls, visits, and love!