We should have been sharing this with you all along.
We were waiting on some answers before alerting the masses to Haden's needs.
In order to start this post, I first need to give you a bit of history.
Haden has been diagnosed with Laryngomalacia - this simply means that the tissue in his neck is floppy. In the extreme cases the tissue of the upper larynx collapses inward during breathing. Laryngomalacia is actually common among newborns; however 99% of them grow out this within the first 2 months of life. Haden is one of the extreme cases, but not severely extreme - and for that we thank God! Haden has strider (which is very noisy breathing), reflux, and mild sleep apnea, feeding problems (see previous posts about Haden's inability to suck), slow to gain weight, and failure to thrive (not meeting developmental benchmarks) ... all of which Haden had prior to his original surgery December 5. The severely extreme cases also include blue spells in which the baby actually turns blue from the lack of oxygen. Haden has never stopped breathing nor turned blue.
*healthy throat *floppy throat
In December Haden underwent his first surgery. They used a laser to cut out the extra tissue instantly causing Haden's O2 stats to jump from 96% (his normal) to a 100%. A small miracle in our hearts. Also in the 4 months since surgery Haden has gained 4 pounds. Another miracle we are constantly amazed at. He started sucking on bottle - although still pulling off the bottle to breathe, and his tight muscles loosened and mobility started.
About a six weeks ago we took Haden into a hearing test. He failed it. The audiologist said that he had so much fluid behind his ear drums that the drums were unable to move causing him to not register sound. I cried that day. We've been in our pediatrician's office every week since to monitor the ear drum fluid. Without an infection Haden went on an antibiotic. It did relieve some pressure, but fluid still remains behind his ears.
On Wednesday John and I took Haden back to Lucille Packard to meet again with Haden's Ear/Nose/Throat surgeon Dr. Messner. We had our list of things ready - sleep apnea, still noisy breathing, and of course the fluid behind the ears. Dr. Messner walked into the room and didn't speak, she just listened. She checked Haden's ears and then scoped his throat again. She asked us about his speech development. He's only making a few sounds. and then it came ...... her recommendation.
surgery again.
less than 20% (of the 1%) who need the laryngomalacia surgery also need a second round to cut more tissue.
PLUS .... ear tubes, followed by a repeat hearing test the next week.
On Wyatt's 4th birthday, May 7, we will be taking Haden back into Lucille Packard for his surgery.
He will again be in the hospital at least one night following the procedure.
Although you never hope for your child to be sedated and sent into surgery, we are hopeful for even more growth. We are so excited about Haden's progress in the past 4 months. He's even taking 3 steps now! (see video - notice the sound of his breathing too)
We feel blessed to have you all praying for success. (again!)
& we thank you for all the love you show when life gets tough and complicated.
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