Memory Lane 8/2/10

Back to Memory Lane...the day we got our official diagnosis of a Laryngeal Cleft. Sloane 12 days old. 

Today was a good day. Sloane had her bronc-scope and she did great. she had to have 2 IVs, lots of blood taken and did not eat for almost 12 hours, was put under and was a TOUGH COOKIE!! i am so proud to be her mommy.

the dr. was pleasantly surprised that Sloane's laryngeal cleft is a suspect level one as were mommy and daddy bc what she aspirated on the swallow test looked significant so we were expecting worse. she DOES have a deep groove in her throat that did not fuse during womb growth. as she is swallowing liquids they are going through the groove down her windpipe into her lungs. a level one is good news. she may not need surgery. all other areas of her throat look good. she does have what they call a floppy airway and that will strengthen with time (that is a result of her being a 37 weeker)  her acid reflux and swelling are very bad and she was put on an additional 2 more meds to address them (so much for having the breast feed baby without any toxins....as my brother says: we make plans and GOD laughs)

the protocol will be the same we HOPE. sloane and i will be staying in the NICU for the next few weeks. we will work on her acid reflux, swelling and need for oxygen. we are hoping her lungs clear from the aspirations w/in that time and she will no longer need oxygen. in about 2 weeks, she will have another swallow study to see if she has improved. if so, we will try to manage some thickened liquid input with therapy. if not, we will continue with the feeding tube.  

the/our goal is to get sloane home. we HAVE NOT met with the NICU team yet (hoping to do so tonight) so there could be changes by tomorrow. but i think its safe to say that we will be able to take our blueberry home in a month. most likely with a feeding tube. she will have that for the next 2 to 4 months. the tube in conjunction with therapy to help her manage her slit/deep groove in her throat to swallow without aspirating. this deep groove WILL NOT close up over time. sloane will need to over compensate will eating to not aspirate.  they will periodically retest her to see if there is improvement. surgery MAY be an option in the future if this does not work.

this is all good news. to know that sloane has no other issues in her throat at this time helps us to accept the diagnosis and move forward. it is funny, how quickly your mind adjusts. this is the norm to us now. our baby is on a feeding tube and thats that. we hope in 6 months to a year, this will all be a distant memory but in the meantime sloane and her care are our life.

she is coming out of anesthesia as i type and tolerated better than i could have. this child is resilient!! we are looking forward to a better day tomorrow :)

thank you for all the prayers! we are very thankful today. we hope that Sloane gets better soon so she can have some visits.

xo sloane's mommy and daddy