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.

SUCKING IS AMAZING

I'm in disbelief.
 I've prayed much thanks the past few hours.

HADEN SUCKED NOT ONE BUT TWO BOTTLES LAST NIGHT!!

I went out with a friend leaving John to get both boys in bed. After a long day of 2 short naps Haden was asleep before John even finished strapping the diaper - let alone taking any milk.

After I came home I decided to try and "sleep feed" in hopes Haden wouldn't wake in a few hours and I could sleep through the night.  I made the usual thickened milk bottle and worked the nipple into Haden's mouth. And with him still asleep that's when I first heard the foreign sound and felt the pull on the bottle. He was LATCHED and he SUCKED!!! He dream fed a whole 2.5 ounces!!! Another huge success since until that moment Hadens max milk intake had been less a single ounce. Amazing!!   Unfortunately he still woke about three hours later. This time he was fully awake. As I put the bottle in this time ... He didn't latch and he didn't suck.  The dance of bottle in bottle out swallow soon started. It took about 8 minutes of this before it happened again .... I felt the tug in the bottle and then heard the sound. Haden was awake and sucking!!!! It surprised him as well. His eyes got huge as he keep sucking and forgetting to breathe (a very usual occurrence even when he nurses and the milk starts the let-down process from his gnawing). I pulled the bottle loose and he caught his breath and reached for the bottle again. This time he swallowed he breathed and drank 3.5 ounces worth of milk.  It was hard for me to fall back asleep after all that excitement.

Here's to hope of more bottle latching and sucking in his future.
Here's to stronger muscles thanks to our now two therapists who work weekly with Haden. 
And a huge thanks to you who have all at one point prayed for our tiny Haden to begin developing physically!
God is listening and teaching Haden the things that I cannot.

one small step for haden ........................................ one big leap for family kind

It's been one week since Occupational Therapy has started.
  And yet ...  progress!!!

At every session Haden's arms and legs are stretched
He has such tight arms and legs ... this is never an enjoyable experience for him

This week ...
Haden reaches higher for toys
he bends his knees with a bit more ease
he is starting to push himself up into a correct crawling position
And best of all ... Haden has learned to be a climber
He is so proud to be on top of anything that comes in his way

Granted he is not able to get his legs up on the boxes just yet 

           non-the-less a blessing to watch him explore

Our therapist also put Haden on thickened liquids.

First she used a spoon, which is an extremely labor intensive process for an almost 10m old.

She told us to not even bother with sippy cups yet.

He still doesn't have the muscle strength in his mouth or his core to be able to suck.

I tried it at the end of the week anyway

I just wanted to see what would happen

Haden mostly chewed on the sippy nipple, but he did get drops of juice 

     he liked it 

for about four minutes he pulled that cup in and out of his mouth

And it was the FIRST TIME he tolerated liquids from a cup

Excitement doesn't even begin to explain our feelings.

  a new sense of hope. 

    a new joy ... just watching my smiley baby be able to swallow a liquid without pain.

And that brings us to tonight.

  tonight we did what we have thought impossible for 10 very long and very trying months.

We used that thickener our OT gave us, and we put it in formula

   We dug out a bottle

      We searched for the nipple with the variable flow 

         and we had hope

For the past month, John and I have been dripping milk into Haden's mouth using a syringe.  

  It was a horrible adventure for all of us. Haden screamed and coughed and choked down the drops of milk. And he fought us with all his strength.   We continued to force milk drops in until he was full at only half of one ounce. (remember a 10m old baby typically takes 8oz of milk).  

Because of that half ounce of formula Haden went from waking every hour and half to sleeping nearly 11 hours each night.  

My own thoughts of  Haden waking so hungry and with all his might gnawing the milk out of me instead of suckling have tormented me this past month.  As rest began to fill my body ... I knew it was time to let God in.         I cannot make Haden suck, and I cannot make Haden grow. 

But I can give over my thoughts and my guilt and my control and let my God teach Haden to suck, and grow.

So as I stuck that bottle in, 

 I began a lullaby that was simply a song of praise

  I watched as Haden did not cry 

  I watched as he did not suck either

 but he gnawed ... and tolerated the thick milk going in and then down into the stomach                                                                      

I sang as he fell asleep after he quickly drank his half of an ounce of milk                                                                                           His stomach was not full of air from screaming

 It was the most peaceful he fallen asleep since in over a month

I know this is one tiny step in the scheme of things

   there is still so much that Haden is not doing  

        he's  not even sucking yet ...

 I know there is still much therapy in his future 

There are so many things he is not physically doing a typical 10month baby should

But my baby is the happiest baby you will ever meet

and my baby is smart and is mentally developed like a 10month old baby should be

but tonight I have a restored hope and a restored faith

  but tonight my baby at 10 months old took his first ever bottle without crying or choking or refusing

TONIGHT MY BABY DRANK MILK FROM A BOTTLE 

    AND TONIGHT I CELEBRATE THAT

keep growing sweet Haden

Halloween

I know my years are limited in the picking and coordinating of Halloween costumes. 
So I did my best to be sure MY BOYS were the CUTEST PAIR of BROTHERS walking about.

I'd love to introduce you to Captain Hook and Peter Pan

Our family tradition - the pumpkin patch

Every year we load the car and take a 40 minute drive outside the city to a small pumpkin patch.
It has no big frills like most of the patches around our area.
There are no jump houses.
There is no train.
There is not even more than a four types of pumpkins to pick from.

But .... it has one big haystack in the middle ... and most years a huge (impossible) corn maze.  Out of the five years we have gone ... only once have actually exited the maze successful.

 



Most of all we love the time we spend as a family while we are there.

a life with little sleep

Amazing how difficult it can be to take a few moments each month to write simple thoughts of life.

I get such low quality sleep these days.
I worry so much about development.
I make it through my days one cup of coffee (or most days Italian Expresso) at a time.
  and when the "liquid motivation" runs low I snap at my sweet boy for simply being 3.
I try to clean only to turn around to see for-mentioned 3 year old boy destroying cleaned area.
The kitchen is a mess, dishes piled, counter tops unwashed. THANK GOD for Walmart food delivery!
I spend hours forgetting about the laundry ... only to have to re-run it again.
I NEED quality time with the husband, or I feel alone.


My sweet boy Wyatt is truly in the stage of being 3 and a BOY.  His cuddle moments are rare these days, and although learning his voice ... phrases like "mommy i no like you today" and "i do it myself, go away mommy" still can leave me sad and yet angry all at the same time. He likes to be dirty and crash his toys together. He likes to bang the hammer and ride his bike. He still has a tender heart.  The consequence he hates the most is seperation. His heart hurts when after a warning he must go play away from the family - especially his favorite family member Haden.

Our little Haden smiles like there is no evil in the world. He laughs. He loves. He grins. And he is a pure joy.  Yet because he was born so tiny he has inner muscle strength problems - and a tongue that needs trained for proper swallowing. He wakes us every 2 hours at night (read I sleep in 1.5hr stretches) to feed because he is completely unable to suction a bottle and has not stimulated enough milk to suffice his now 8month body.  He's active. He's army crawling and rolling. He's reaching for toys and licks everything! I only wonder what he would be able to do if his outer strength matched his will-power.  I am encouraged and excited to begin Occupational Therapy with him soon.

My love, my husband, has been waking at night with me demonstrating his love as I feed and hand off Haden to be soothed to sleep. Although he is at times snappy with me, he loves me. And although at times I am snappy with him, he is my love and my partner in this crazy life of 2 boys and little sleep.

And here I sit, watching the supposed "nap time" on the baby monitor. Haden crawling around his crib ... Wyatt playing in Haden's room, throwing toys to his brother and calmly talking to him like they are already best buddies.

How life is going to be challenging and wonderful and surprising raising these two boys.
How I will always worry about their development.
I will always worry about their inner hearts and love of the Lord.
I will ONE DAY have a clean house again.
I will miss those sweet smiles in the middle of the night,
  BUT
I will not miss waking up every 2 hours to a baby with 5 teeth.