Are We There Yet?

It is day 14 of blogging!!! And I have to say, I am enjoying it. I should have listened to my MIL and started this a long time ago. I thought now would be a good spot to post/reflect in A Sip Of Heaven on the 18+ month journey we traveled with Sloane in a time line fashion. 


A laryngeal cleft in many circumstances is not diagnosed until months or sometimes years after birth. We thankfully were much luckier than that. I feel incredibly for those parents. From my research, I have read that children whose diagnosis comes later in life suffer through days, months, years of pneumonia after pneumonia with no known cause. I cannot imagine!?!? 


Sloane was diagnosed at day 13 of life!! A Remarkable Blessing! 

2010
7/20: Sloane arrives
7/22: Sloane turns blue while nursing in normal nursery
7/24: Sloane is transferred to the NICU and is promptly put on oxygen and antibiotics for her pneumonia. Because Sloane was aspirating her liquids therefore filling her lungs to pneumonia, each time she ate her oxygen level would dip into the 60s so O2 was necessary.
7/26: After a team of doctors/SLP watched her nurse it was determined that a nasal feeding tube will be placed in. Sloane no longer safely take food by mouth at day 6 of life.
7/27: 1st swallowing study
7/28: Upper GI barium Swallow
7/29: Beside Soft Scope with ENT
8/2: Bronch Scope with ENT. We get a diagnosis of a mild Level 1 laryngeal cleft. We were told it could be called a deep groove not even a cleft.
8/18: 2nd swallow study
8/23: Reflux swallow study for gtube surgery
8/24: Nuclear Medicine Reflux Scan
8/31: G Tube surgery
9/10: Sloane comes home FINALLY at 7 1/2 weeks old.
9/12: Visiting nursing 2X week begins
9/13: Ped appt.
9/16: Ped appt.
9/22: Early Intervention Intake (this was a hard one to handle...another post, another day)
10/1: ENT appt. to discuss plan of action for laryngeal cleft
10/6: Surgical follow up for gtube surgery
10/9: Early Intervention begins weekly
10/13: Mickey Button placed in
10/20: Ped. appt.
11/3: Swallow study #3 & surgical follow-up for mickey button
11/9: Developmental Assessment (for all NICU babies)
11/10: ENT appt. to discuss results of swallow study
11/22: Ped. appt
12/6: Brain CT scan for geneticist because laryngeal cleft can be part of a syndrome. It was clear so it was determined that Sloane's cleft is an isolated birth defect.
12/10: Feeding therapy
12/13: Radiesse injections into Sloane's cleft to try to fill the gap. Once ENT went into Sloane's airway again to inject it, he changed her diagnosis to a definite Level 1 laryngeal cleft
12/22: Swallow Study #4 & ENT appt. to review results
2011
1/20: Ped. appt
1/25: CADD clinic appt. at Children's Hospital in Boston with Dr.Rahbar & Dr. Rufo. Dr. Rahbar does a bedside soft scope and states that he THINKS Sloane's cleft is a Level 2
2/9: Surgical follow-up for mickey button
2/23 Hearing screening (for all NICU babies)
3/3: Pre-op at Children's Hospital
3/7: Bronch Scope by Dr. Rahbar & biopsies of GI track by Dr. Rufo bc of Sloane's severe case of reflux. Dr. Rahbar reports to us that he surprised because Sloane's cleft is a very deep a definite Level 2......almost a Level 3
3/14: A scope of Sloane's urinary track bc of an earlier uti
 (the most painful thing I have ever seen done to my child)
3/25: Pre-op at Children's Hospital
3/28: Cleft Repair surgery by Dr. Rahbar. All went well. We are sent home a few days later and continue with our no liquids approach.
4/22: Ped. appt.
6/21: Follow up with Dr. Rahbar after surgery. She has a bedside soft scope and it shows that  Sloane has healed great. We can begin to slowly thin out thick liquids and see if she tolerates them until her swallow study. Sloane does AWESOME all summer long. We are giving her yogurt, ice cream, and juicy fruits.
7/13: Gtube feeding clinic for help with managing feeds because Sloane is eating solids.
8/4: Ped. appt.
8/22: Swallow study after surgery to see if her cleft has been repaired successfully. Sloane aspirated EVERYTHING except solids. DEVASTATED cannot come close to how we felt. Sloane is to be taken off all foods/purees. She can only have solid foods for now on. 
8/22: Dr. Rahbar calls. He too is surprised. Suggests we look at Sloane neurologically since her cleft is healed perfectly and she is still aspirating. He says "she could have a neurological problem" I was a complete DISASTER.
8/29: Neuro appt. at Children's Hosp. Doctor suggests an MRI to rule out 2 brain malformations
9/14: Feeding therapy
9/28: Brain MRI. It comes back perfectly normal!!!!!! I like to say now that is Sloane gets anything below a B-; we will have to take measures because that means she is not trying her best! We have proof that her brain is perfect. It is confirmed again that Sloane's cleft is an isolated birth defect and she has no other related issues.
10/25: Follow up with Dr. Rahbar after failed swallow study and perfect MRI results. He suggests that Sloane has neuro/muscular discoordination because of the abnormal anatomy she was born with and that we need more time and specialized swallowing therapy.
11/9: Ped. appt
11/22: 1st appt. with swallowing specialist  at Children's
12/21: 2nd appt. with swallowing specialist  at Children's
2012
1/6: 2nd hearing screening (for all NICU babies)
1/25: 3rd appt. with swallowing specialist at Children's
2/10: Ped. appt.
to come:
3/7: 4th appt. with swallowing specialist  at Children's
4/3: Follow-up with Dr. Rahbar after a few months of swallowing therapy 


As I was typing this I realized again why I feel different that than a parent of a child with no medical needs. It is because I am. I am not the normal parent that cries when her child gets a shot or only goes to the schedule routine monthly well visits.

I am the parent that has watched her child be terrified, tortured, and violated.
I am the parent who holds her child close and says "its ok, mommy's here" when someone is doing something painful to her.
I am the parent who has handed their child over many a time to a stranger.
I am the parent who has held their child until the anesthesia has taken.
I am the parent who has slept in an ICU crib with their child so she stays calm.
I am the parent who has a child with a life altering birth defect.
I am the parent whose entire life revolves around their child's health. 
I am the parent of a child who AMAZES me with her fight EVERYDAY!!!