To be honest, the last week has been kind of rough and I just didn’t have the strength to do it!
The Happy Baby has been home with us for almost 5 weeks now. 5 glorious weeks!
He is so precious, people.
Always happy. Always smiling. Always content.
But, man! He has a tough time eating.
Every time I go to give him a bottle, I feel like I have to gear up for battle.
But I am a weary soldier, my friends! I get so discouraged when he doesn’t eat.
The whole feeding process usually takes about an hour and a half- an hour of trying to give the Happy Baby opportunity to eat on his own and then a half hour of failed attempts getting put through his feeding tube.
By the time the whole ordeal is said and done, it’s time for me to pump and then start the whole process all over again.
We have tried different types of bottles and played around with his schedule to see if there is a better way, but we still face the same battles at every feed.
We think he might have some reflux (more than likely caused by the tube that had been down the back of his throat for most of his life in the NICU) and his suck is still quite weak.
I suppose I wouldn’t be so frustrated if every once in awhile he will surprise us by chugging a whole bottle (or a decent amount) in a timely manner. It makes me wonder why he has such a difficult time on all the other bottles when I have seen him be successful before.
I have, on more than one occasion, sat with the Happy Baby in my arms, tears streaming down my face, completely overwhelmed.
Overwhelmed by his struggles, the whole feeding tube thing, and a general discontent that things have to be this way.
And overwhelmed by the fact that he can probably sense my overwhelmed spirit – adding insult to injury!
In the midst of all this, we received a call on Monday from the surgeon telling us that the Happy Baby’s muscle biopsy results were in and that I was to call the genetic office immediately.
Those darn genetic tests!
I phoned the doctor and they scheduled for us to come in on Tuesday next week.
When they said Tuesday, I was like, “ARE YOU KIDDING?! I have to wait seven more days to find out about our baby’s future?!”
*I hope I was a bit more gracious than that looks all typed up.* 🙂
Getting off the phone I fell to my knees and just cried out, “Abba! Father!” several times before pulling out the Bible and pouring over some Scriptures.
It was all I could think to do and say as the Happy Baby’s tomorrows loomed ominously ahead.
The next day I called the office every ten minutes – trying to get a hold of the doctor to see if he would just speak with me about the details over the phone.
A whole day passed and no one got back to me.
So the next day I decided to email the geneticist.
(This is where it gets good.) 🙂
I got busy typing up this email telling him how anxious I am and how desperate I am for him to tell me what our boy’s diagnosis is.
As I was typing, the Happy Baby was lying next to me on a blanket. I was so caught up in my worry-filled email that I didn’t even realize that the Happy Baby was busy doing something, too.
He was busy rolling over for the first time.
For someone who is being tested for muscular dystrophies, I think that is pretty amazing.
And in that moment I shut down the computer. I didn’t send the email.
Because the Happy Baby’s rolling over was just one more confirmation from the Lord that our boy is going to be just fiiiiine.
It was as if the Lord was saying to me, “Julie, stop being anxious. Look at what I am doing in your son.”
A friend texted me and said, “It is God’s report that matters – not the doctor’s.”
So that is what we are resting in until Tuesday’s appointment.
Thank you for your continued prayers.
“As for God, His way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him.” Psalm 18:30