Post-Surgery update

Haden went into surgery on Monday May 7th.
After being put on general anesthesia, Haden's throat was scoped and they found that he indeed needed supraglottoplasty (which involves cutting the tissue of the aryepiglottic-above the vocal cords- opening the airway).  The doctors also found evidence in the throat tissue of gastroesophageal reflux.  Haden also had ear tubes put in.

Dr. Messner came and spoke to us when the surgery was over. She said that the cuts this time were "harder and deeper" than before. She suspected that Haden would have a rougher recovery than in December. We asked her what caused the laryngomalacia to come back and she said that Haden's throat tissue is just soft, while breathing that soft tissue is being pulled (approx. 30 times each minute) until it stretched enough to cause stridor and make breathing difficult once again. She also said Haden's reflux irritates the throat tissue making it more suspectable to being soft. Unfortunately at the end of our conversation she mentioned that until the swelling goes down and Haden we will not know if he will again need surgery a few months later.

John and I were soon called into the recovery area to see Haden. He was still struggling through a breathing treatment and was in great discomfort and pain. The breathing became less labored and soon we were taken into our very tiny short term stay room. Haden struggled in not wanting to taking liquids and napping (as it was a shared room until late at night.)  Finally about supper time, Haden took 3 bottles and fell asleep. When the room cleared out about 10pm - the nurse allowed me to lie down to sleep with Haden. He and I were up every few hours with pain ... but his O2 stats stayed constantly between 97-100 so we were released to come home.

After getting home Haden has continued to heal. He slowly has been getting his full appetite back.  Haden is getting his full energy back as he played with Grandma and Memaw.   He is yet again trying to keep up with his big brother.
There is still stridor in his breathing, although much quieter. And he continues to be on medicine for reflux.  Yet we wait ... hoping what we currently hear is still swelling from surgery, but secretly preparing ourselves for yet another -tougher- round of surgery, if it should come to that again.

To end on a positive note
    Here's a video of Haden joining Wyatt in the sprinkler on Wednesday afternoon.
Our joyful baby has not been brought down one bit by his breathing nor hearing adventures.
     his JOY always makes me grateful of the Lord

Here we go again .....

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.

a weekend away

John and I were blessed to have Friday night until Sunday afternoon to disappear kid-free time together.

We sat in a cabin, in the mountains of Sonora California.
We listened to the melting snow.
We didn't talk. We just sat in a cabin in the quiet.

We read the bible and books.

We breathed in the fresh air surrounded by redwood trees.
We were refreshed and revived.

We took a nap - after breakfast!

We went to bed late and watched 2 movies in one evening.

We ate breakfast at a restaurant.
We ate dinner at a restaurant .... and did not feel rushed.

We made goals for our family.
We gave those goals to God through prayer.

We felt confident in the care our kids were getting.
We did not text but once or twice a day ... and no phone calls.
We missed them ... but let go of the stress that is caring for kids.

We talked.
We had full complete conversations.
We listened to each other
      and
We were reminded that we do fit well together.
We like each other, we are not "just in love"

A weekend away .... so filling for the heart, the marriage, and the family.