A lot of you wonderful, caring, amazing, and thoughtful people have recently asked the following questions: "How's Joseph?" and "When is he coming home?"
I am here to answer these questions.
Joseph has done a lot of growing lately. Except in his neck. He still doesn't have a neck, only chins.
And sleeping is still one of his favorite activities.
Sleeping has also become bonding time with dad.
There have been many changes. Most of you were aware that back in September we were just waiting for hernia and circumcision surgery to go home. Our surgery was scheduled. We were on a nasal cannula and just crushing it.
But life happens. As it often does. And Joseph caught two viruses which were basically just colds. Colds to most normal full term babies, but very dangerous to him. He had to go on back on a oscillator and nitric oxide just to keep his lungs going.
We weren't sure if he was going to make it. I had no control. I didn't realize how much I liked being in control until this moment. Until I realized I couldn't make it better, couldn't make it go away.
But like Joseph has done his entire life, he fought. He got better. We started to improve again. He got back on CPAP and even on nasal cannula. The surgery team was going to asses him again for surgery, then discharge.
As surgery approached, our progress came to a stop. He started to go backwards again. Back on CPAP, back to vent. No control.
Joseph's doctors (who btw we have nicknamed the Dream Team because we <3 them so much) sat us down on Monday to tell us that Joseph was going to need a trachea and he needed it soon.
No promises that it would work, nothing else that we could do to help him. No control.
I couldn't quite wrap my brain around the situation. We were so close to home. How could we end up in a conversation that involved the words, "survival rate"? My sadness quickly turned into anger. How in the world could God bring us this miracle just to rip it away from us? How could he let us lose so much?
After throwing a huge pity party I finally realized something else. I have never had control. Not ONCE in this entire situation. Not even when it came to his adoption. God has been in control this entire time. He has allowed us to be in Joseph's life. He has allowed the moments of pure joy. Joy that is so unexplainable.
I am grateful that we have someone to read a bedtime story to because I didn't think it was ever going to happen.
Yes, it has been a bumpy road, but he has given us so many more blessings than bumps. We have been able to be apart of this amazing kid's life. Through Joseph, God has taught us how to love, how to be strong, and how to trust
And guess what? Joseph fought through surgery like a champion. He did better than expected. He was so brave. Much braver than his momma.
Dad even planned a 1/2 birthday party for him on Friday. A true celebration of life.
Yes, a trachea is scary. I mean, the kid LOVES to pull things out like his feeding tube and CPAP, but for the first time ever yesterday, I saw him breathing comfortably. He was no longer struggling just to breathe. It was a very beautiful moment and worth all the pain and anxiety to get there.
So what does all of this mean? The "plan" right now is that the trachea will stay in for 1-3 years depending on how he reacts. He won't be discharged from the hospital until at least April. From there, we will see his progress and he may need to go to a rehab facility for awhile. We don't have an exact time when he'll be home. Things could always change. We aren't out of the woods yet, but we have a lot of hope. Between Jesus, his nurses, doctors, and modern medicine, we have a lot on our side.
But please don't be sad for us. The last thing I want is for you to see these photos or read this and feel bad for us. We are finally at a place of peace. A place where I no longer view the hospital in a negative way. It may be his home for awhile, but it's not forever. My hope is that these photos bring a smile to your face because let's be honest, even with the tubes, Joseph is the cutest darn boy on the planet.
Love,
Ashlie- a very biased mother
