Do you remember when your mom told you the phrase, “You can’t always get what you want”?
At the time, that kind of response probably felt like nothing but a giant irritation and road block to happiness.
When you get something in your head that you want, it’s pretty hard to let go.
I mean, it’s obvious that you know what’s best for you, right?
And with the Happy Baby, for that matter! :-)
We have tried different kinds of bottles, we have changed positions and nipples a million times, we have prayed over and sang to and even tickled, but my precious boy just doesn’t seem interested in eating.
Would you believe that I have even gotten frustrated with that little bundle of cuteness? I want to cry at him, “Do you realize that if you just drink your milk then you can come HOME?!”
But, there’s something bigger going on.
Something I haven’t shared because, to be honest, I thought it was just an unimportant side thing that would improve over time.
Aside from the virus and the rapid breathing, the Happy Baby has presented with low tone – also known in the medical world as hypotonia.
I figured that his floppy neck was because he has pretty much been lying in a bed since he was born.
It’s not so simple, however.
Although he has decent strength in his legs, the upper part of his body is weak. This includes his face, which includes his mouth, which includes his suck (which is why bottle feeding is hard and nursing is pretty much impossible). This could also be what is causing his rapid breathing – his diaphragm muscles are weak, so they cannot take in and push out sufficient amounts of air.
The GI doctor suspects that his low tone is effecting his digestive system as well. The muscles in his stomach are weak, so they can’t push out the food very quickly. This would explain why he doesn’t ever seem hungry.
It is devastating news because the hypotonia is unexplained. The Happy Baby’s MRI of his brain came back normal – which is great (his brain is healthy), but it means that the hypotonia is probably the symptom of a larger problem.
Like a genetic disease.
You’re probably wondering WHAT? I thought the genetic test came back negative??
Well… one genetic test did.
Last week the geneticist paid us another visit, explaining that he wanted to run more tests for a few other genetic diseases.
I cannot even tell you the pain that visit caused. I thought we were out of the woods on that one. I thought we had been delivered from that disaster.
The knowledge that there still could be a lifelong disability in our sweet baby boy’s future is so hard to work through… especially the second time around.
Constantly driving back and forth to visit, coordinating schedules, and trying to preserve some sense of normalcy for the Happy Buddy is getting more and more difficult. Not to mention the constant anxiety I feel when I am not with my baby (I mean, seriously, people. That kind of adorable should never be left alone!).
We have made a decision.
We are getting the feeding tube.
Tuesday morning the Happy Baby will have his surgery and hopefully, if all goes well, he will be able to come home by the weekend.
I am not going to lie.
I am disappointed.
At the beginning of this whole mess, I truly believed that everything was going to be just fine. I thought that we’d be able to wrap up this season in a little present and tie the bow off with a complete healing. I envisioned the nurses wheeling us out to our car on the day of our discharge with our church family lining the halls of the hospital, cheering for the Happy Baby and all that the Lord had done to make our boy 100% well.
As this week brought the geneticist back and the bottle wars did not improve, however, I found myself before the Lord once again, begging for answers.
And He has said, “Surrender.“
No, things are not turning out the way I wanted.
But they are turning out the way God wants.
And, as much as it grieves me to type this, that is okay.
That is good, even.
He clearly knows what is best. For right now and for the future.
Even though I totally do not understand.
I have to remind myself constantly (and be reminded by friends and family constantly) it is not for me to look beyond the now. I can work myself into a frenzy (and a horrible case of mastitis) when contemplating all of the what-ifs.
Because at this point we are looking at a lot of doctor appointments, a lot of physical therapy, a lot of hospital bills, a lot of medical equipment and medicines, a lot of wait as we are patient for further testing.
To cope, the Happy Hubby and I have been joking lately about the concept of Baby Steps from the movie What About Bob. :-)
And a lady in my church is always saying, “Just do the next thing.”
So that is what we are doing, friends. Doing the next thing. Which is surgery for a feeding tube.
Then the next thing after that is recovery.
Then the next thing after that is home.
Then the next thing after that is to trust the Lord for all the next things.
I think it will stay there indefinitely.
*We covet your prayers for Tuesday’s surgery. Check out Happy Home Fairy’s Facebook Page for updates.*