I'm preparing to launch the blog soon, and I want to start by sharing my son's story. If you're interested in sharing your child's story with us, please comment and let me know! I would love to have a lot of stories prepared to post as soon as we're ready to have the blog go public.
My name is Tina, I am a mother of 4. I have all girls, their ages range from 15 down to newborn.
ReplyDeleteMy 6 yr. old daughter Avery was born with CLE. I was told she had probably swallowed a lot of fluid at delivery because her breathing was a little labored... but nothing to worry about. Luckily she was my 3rd baby so I knew something wasn't right when she cried all night, and made a strange grunting noise. The next morning when the doctor came in to discharge her, I was told that everything was great and she left. I guess I had a look of uncertainty on my face, because the doctor came back in a few minutes later and said, "Is everything okay? You look like you want to say something." I told her it was probably silly, but I felt like there was something wrong, she was different than my other babies. She asked to check her again, this time while I nursed her so she could hear better, Avery was screaming the first time. Avery was immediately taken from me, they took her to the nursery for about an hour. There they were trying to diagnose her. They then took her to the NICU. There she stayed for two weeks while the doctors tried to figure out what was wrong with her. It turns out they had never seen a case of CLE. Everyday we arrived to hear about what they thought it could be, all the while being told "she may die, and we can't figure out what it is". Finally my husband said, "then get her stable enough to transfer down to Children's Hospital". Mind you we live in San Diego county, California... not a small town. This wonderful doctor named Dr. Safari gathered all the heads of the different departments with text books in tow. After a few days of gathering together one doctor, (the head of cardiology) said he thought it was CLE, he remembered a case that he observed while he was in medical school. They then sent us home with an appointment for Children's Hosp., telling me to call 911 if she turned blue. 4 days later, she had the MRI and they confirmed it, she stopped breathing a couple of times that night so we stayed two more nights, and by that time they decided it was an emergency to do surgery then. They removed her upper left lobe. Recovery was slow. She sees a pulmonologist regularly and is doing pretty good. No damage was done to her heart. She does have Asthma and way less stamina than other children. We have chosen to not put limitations on her, and to let her figure them out on her own. It has worked out beautifully, she just goes and goes always working those little lungs, trying to keep up with the other kids. It was a life altering experience. I now have anxiety. I am a mind over matter kind of person, so I think I have it in check, but I find myself often in distress. My husband suffered from a long battle with PTSD, four months after. We are both doing well, but it has taken it's toll on our entire family! I thought I would go back to the hospital to be a "cuddler", the people that go in and hold the babies when the parents aren't there. Unfortunately, I still can't walk down that hallway. I know it will get better with time, but it really threw us for a loop.
I have a newborn and am sooo worried that she may have it. That's how I came across your site. I hate being told, we just don't know enough about it... and it's not likely, but...
Wow, Tina, thanks so much for commenting. Your story shows just how important it is to listen to our mother's intuition. It was my husband who inherently knew that something was not right with our little boy. Fortunately, we took him to the ER that night. I understand the emotional struggles you both have. I've dealt with that too, off and on, over the past year or so since my son's emergency surgery. God is good to provide peace and comfort, but there are times when I still struggle with irrational fears. It's so hard to come that close to losing your baby.
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