The laryngeal cleft has been explained many ways to us by many different people but there are still days when we can't answer people's questions about it. Because the LC, as I will refer to it, is rare birth defect we had no prior experience with it at all. We were deer in headlights.
Sloane was born with pneumonia. We didn't know that until day 4 of her life. She was not happy while eating her first few days of life. On day 3, as I was nursing her, she turned dusky or rather gray/blue in my arms. Here's where you may want to hold onto your seat! The nurse, who was helping me nurse, told me that all babies turn blue while eating. Let me repeat myself here. The seasoned nurse told me that all babies turn blue while eating. I accepted that answer and then spent the entire night wide awake and nervous because I knew something was wrong. Surprise, surprise..the next day the same thing happened and that is when her pneumonia was discovered. We were transferred to the NICU for 49 long, exhausting, scary, and educational days.
In basic terms, a laryngeal cleft allow liquids thru it and that liquid ends up in the lungs.ASPIRATION....a dirty word in our home!! Solid food passes by the cleft and not thru it so it is safe. Sloane's cleft is a level 2; not the best option. The larger the number; the bigger the cleft. They range from 1 to 4. Sloane's case was more challenging because even though she had no liquids by mouth after day 7 of life, she was aspirating her reflux and perhaps her saliva. We held her upright for months scared to death that she would once again get pneumonia. We tortured our families and friends with this statement: hold her upright!!!! Not to mention the all hand washing and all hand sanitizing (another post in another day...germaphobs). We are obsessed with keeping Sloane healthy.
We had Sloane's LC closed or in slang terms had her zipped up properly when she was 8 months old by the fabulous Dr. Rahbar in Boston. Although, surgery on your child's airway isnt something that is an easy swallow...no pun intended...we had no option according to the top cleft specialist in the usa. We thought the surgery was going to be the end all be all. We soon learned that we had a slow and steady journey ahead of us and Sloane was our guide. More to come....
I would like to stop here and say that my husband and I know how lucky we are to have such a healthy child. It is him and I that are in this world together everyday. We are a team that has the same ultimate goal in terms of our child. In the realm of birth defects/illnesses/disabilities, we are very very very very blessed/thankful/lucky. We never lose sight of that. I have a St. Jude's Children's Hospital calendar hanging in our bedroom to remind us each day that many children need prayers. Each time we go to Children's Hospital in Boston, I get beyond anxious because I just want to take my baby home with her LC and live happily healthier ever after. My step-mom is my wing man on all of those days and at least 2 to 3 times while walking through the hospital we catch each other's eyes and know what we are both thinking. Thank You Big Man Upstairs for this healthy, fabulous child!!! And on the days when there are bumps in our road and I want to say "Are you fucking kidding me?" I have plenty of people around me who won't let that happen. I have been kicked in the ass many times.
Today (as a short side note) was Sloane's 18 month ped visit. She grew 2 1/2 inches and gained 2 lbs. Drama momma teared up when the Dr. told us and then complimented me on the job I was doing as mom of a child with a medical need. A compliment that I accept gladly but at the same time I wonder who wouldn't do what we do for their child???? Sloane's growth is constantly a top priority. I used to count every oz. she gained. I have relaxed some....LOL. Now, I count every 1/2 lb. HA I have heard so many stories about tube fed children not looking healthy that I worry. That's a worry that creeps in randomly everyday. Shocking??? Probably Not. Worry is the new relaxing for me!!!!
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