Memory Lane 8/18/2010

BACK TO MEMORY LANE

8/18/2010

when I re-read this email, I had to laugh at the fact that I call Sloane's laryngeal cleft a deep groove rather than its factual diagnostic name....that's some serious sugar coating)

first, let me say thank you for all the prayers you all sent for today. we are so thankful for your support. 

sloane had her 2nd swallow study today. the goal was to see if sloane's acid reflux/swelling treatments have helped her with her swallow enough to bypass the deep groove in her throat so that she does not aspirate liquids into her lungs. 

sloane did aspirate today. it was to a lesser degree than her first study weeks ago so we can assume that the meds did in fact help. it would have been a blessing from above for her to not have aspirated at all but logically we prepared ourselves that the groove would not magically close up and 3 weeks simply is not enough time for an infant to progress enough to bypass a groove.

so what is next? we have a meeting on friday w/ our teams of doctors to plan our discharge. basically, there will be a decision about how sloane is going to be fed at home ( a nasal feeding tube or a implanted g-tube)and what type of services will see need now and in the future to prepare her for eating by mouth. 

it is not clear to us until we see the ENT again about how we will address the deep groove in the future. will surgery be an option in 6 months when she is bigger/older or is there a high chance as she grows the groove becomes less significant and she bypasses it with ease.

we have 2 options. a nasal feeding tube as she has now and an implanted stomach feeding g-tube. we arent sure what the team will suggest but we have our own opinions on both. before we can go home, we need to be trained in     the nasal tube and its feeding procedure as we will be responsible for replacing it OR for the stomach tube we need  surgery, healing time and training on its feeding procedure. either way im hoping we are home in weeks not months. we are all ready to get home and start enjoying the bliss of parenthood. 

today was a confirmation that we have a long road ahead of the 3 of us. as with all things in life, we are thankful....for sloane being healthy, for finding out about the groove bf she got sicker, for all the family bonding we are doing in our small room, for the support around us from all of us and for the fact that GOD answered our prayers and gave us this amazing child. there will be days, when im sure we will lose sight of our blessings and we hope you will all be there to support us then as well. 

each day, sloane and i say our prayers and we pray for all of you. your care has not be forgotten through this past month. 

on brighter blueberry notes, sloane weighed in at 7lbs 7oz this week. she is sowing some wild oats..she may have some colic like her daddy did they tell me. i said "acid reflux, a cleft, and colic....are you joking" and they said "it could be worse" and that it can be!!

xo sloane's mommy and daddy