What a year!

I still can't even believe that tomorrow will be one year that we had our surprise gift...the most precious surprise I could have ever gotten! Time has both crawled and flown by. For any of you that may not be aware, Charlotte was born with macrocystic lymphatic malformation. Her abdomen was completely filled with cysts because her lymphatic system in her belly had formed 2-3 sets instead of one. We knew while I was pregnant that something wasn't right, but they weren't able to diagnose her until after she was born. After changing doctors 3 times...my doctor that delivered Anabeth no longer delivered and the second didn't deliver at the hospital we would have to have Charlotte...I finally had a doctor that would deliver my girl. Not knowing what to expect was beyond terrifying. There was a team in the delivery room to check her out as soon as she was born and see how bad the situation was. Thankfully, it wasn't too bad and I was able to see her and kiss her for a few minutes before they took her away. We were starting to get hopeful that it wasn't too bad and then we saw her first MRI. Her entire abdomen was filled with these cysts to the point that every organ except her one kidney was pushed to the right side. A week after her birthday, she was transferred to Nemours in Orlando. When she was a week and a day old, she had 5 procedures in one evening. She had her first interventional radiology treatment along with upper and lower GI, cystoscopy, and vaginoscopy to evaluate the extent of involvement of the cysts. Thankfully, there wasn't involvement in any organs that required treatment or caused concern. It was looking like our girl would have a couple more treatments and be able to come home. Unfortunately, this didn't happen. She ended up with a roller coaster battle of small bumps in the road that ended up extending her stay and she didn't come home until the day of her 2 month birthday. This would have been tough enough if she was our only child, but having a 6 year old made it that much worse. I had to divide my time and it absolutely broke mine and my 6 year old's heart! Thankfully, the hospital in Orlando allowed Anabeth to go meet her sister. It was definitely head over heals love at first site! The little girl that had begged and prayed for a baby sister finally had her dreams come true! When Charlotte came home, it was far from over. She had a feeding tube and was on around 5 medications....I had to become a nurse as well as mom to my baby. The feeding tube that she hadn't bothered the entire time she had it in the hospital, came out sometime between midnight and 5 am one morning. Mommy nurse had to put it in alone. This happened one more time before I got jammies with hand covers and mittens for during the day. Slowly, we got her off of all medications except 2 and we were looking at 2-3 years of back and forth trips to Orlando and specialists visits monthly in Jacksonville. If you've ever questioned the power of prayer, this baby is your evidence. We went for an MRI in June before her July visit to Orlando. This was to tell Dr. Johnson...the MOST AMAZING, yet humble doctor you could ever know...what treatments he would be doing in July. We got to Orlando on Monday after the 4th of July for a week long stay. On Monday, we were told that she had two very small spots to treat and he didn't see that she would ever have to come back. I don't cry often, but when I left that appointment, tears of joy flowed and wouldn't stop. I just couldn't believe the news. We had an ultrasound in October that confirmed the absence of any evidence of her ever having this condition...except the dead tissue from the treatments. We will go Friday for her follow-up MRI and if all is the same as the ultrasound, Charlotte will be medication free and able to go to daycare. This year has been one of the toughest I've had. I've been juggling working at home with a baby at home and taking care of my oldest, but I'm so thankful for everyone that has prayed for us because it has gotten us through the worst days and now to a healthy baby girl. I had the joy of meeting a mom in Orlando the other week that has a baby with a very similar condition and I was so glad she was able to see Charlotte doing so well. I know that as bad as it has been, there are so many others that have the pain of infertility, miscarriage, a baby dying, a baby in the hospital longer with worse conditions...and I am beyond grateful for my two girls that are healthy. We're still not completely done with our journey, but it looks like all of the major hurdles are behind us. We certainly appreciate continued prayers and please, when you think of it, say a prayer for all of the babies, families, doctors, nurses, and other staff in NICUs. It's a rough time for all of them and not everyone has a happy ending! The love and support we received was just beyond our expectations and we were so fortunate to be in one of the best hospitals in the country! This year, we're looking forward to new milestones and a crazy life that comes with being a family of 4, but we wouldn't trade it for anything!