We got the go-ahead to come home this morning from the hospital :) Jacob currently is somewhat stable, basically needing very close monitoring for a while. He's on oxygen, but last time he had pneumonia, he was also on oxygen for several weeks after. Paul and I had to learn how to deep suction (suctioning down the nose into his airway,) seeing that Jacob is now requiring that every now and then. That sure was a big step for me, but I did it. It's never nice 'practicing' such procedures on our own flesh and blood! We're really hoping that he's not going to need it much, as it doesn't take much and these kids to become dependent on it. Yikes.
Yesterday, Jacob reached the 18 month milestone! To us that is HUGE!!! We've been so blessed. Even though we were in the hospital, with not such a healthy boy, I was still feeling abundantly thankful. It could be a lot worse.
Here's a poem that summerizes our past 18 months with our dear son.
When I look over the past days,I see we’ve been brought upon many different ways.
Many times we feared the worst,
Especially at the first.
Those first days, so helpless we were,In our head, things were a blur.
There were parts mis-formed in his brain,
The road was going to be tough, that was plain.
‘Jacob will tell his own story,’ we were told,‘We’ll all have to see how the future will unfold.’
5 to 15 months is life expectancy,
We had to trust in God especially.
We were disappointed bottle feeding didn’t work out.We had to go a much dreaded g-tube feeding route.
Formula's, syringes, pumps and rates were all learned,
Nursing and bottling had to be forever adjourned.
We were discharged at 6 weeks,With a growing boy with healthy cheeks.
He cried, choked and gagged the whole way home,
Our journey continued to be wearisome.
Uncertainty faced us many a day,It taught us to continually pray.
When we didn’t know what way to turn,
God would lead us directly from His word.
Up and down we went all night,As he’d never sleep super tight.
Night nurses were added to his regime,
Things improved greatly for the most, it seemed.
Many, many appointments were attended,Good and sad news usually blended.
We never looked at Jacob as experimental research material,
Only things for his health we saw as beneficial.
18 months we can gratefully reflect on,So quickly the time has come and gone.
With so many discouragements,
Regarding the physical assessments.
Even though the brain is regressingTo dwell on such facts is simply depressing.
We’ll hope the regression is slow,
‘Cause there’s no way to assuredly know.
In and out the hospital with lung issues,Simply because the lacking of brain tissues.
Respiratory distress is no fun,
Every time antibiotics were begun.
Indeed, at times the ways been rewarding,Especially the smiles have been a blessing.
Those smiles and giggles we never thought we’d see,
It brought us so much glee.
As we face the uncertain future,
As a whole it seems so unsure.
God continues to be faithful,
Whether our road is joyful or painful.
We love our little boy more than words can say.So much more with every passing day.