I’ve asked myself many times, why is it that only when ‘bad’ things happen, like Jonah getting sick or admitted into the hospital, do I feel the need to post something on this blog? I guess it is more to keep people who want to be updated on his status in the loop. Maybe it is me just being selfish – asking for prayer when we ‘really need it’. Well we probably ‘really need it’ more often than we ask; like every day. But so does everyone else. I’ve found that once you begin to dig into life with other families and other people everyone has ‘things’ going on and are in need of encouragement and prayer from the body of Christ.
So with that note I am going to try to be more diligent with my updates, so here is an update on where our Journey with Jonah is at today….
The last updates pertained to Jonah’s stay in the hospital with RSV. He’s has not been re-admitted to the hospital since discharge, but is currently on oxygen 24 hours a day. It is taking longer than expected for him to get his oxygen saturation levels back to normal. We can walk him 7 feet either way right now as he is attached to his oxygen machine 24/7. We have an oxygen condenser for him that takes air from the room and concentrates the oxygen level, so we don’t have to continually change oxygen tanks. On Friday night the power went out in the middle of the night, so I had to lug the huge back-up oxygen tank up the stairs. Thankfully the power kicked back on about 2-3 hours later. The next night we saw on the news that there was actually a tornado that touched down about 2 or 3 miles from our home.
So Jonah has now been home with the oxygen tank now almost 2 months. He seemed to be making strides in getting his lungs healed, but ended up getting sick again in early February with a fever and another nasty cough. This brought his progress in eating to a halt… again….and he really hasn’t gotten back to where he was either. On Friday 2/24 he had an appointment with a Gastrointestinal (GI) doctor. I have been fighting this one hard. We tried fervently to keep up with his feedings, but we just aren’t seeing him thrive. Jonah just isn’t getting enough intake to gain significant weight. I’m ready to see him thrive! I know that this is going to be the best for Jonah, we truly have tried…it is frustrating. We can tell you how much Jonah ate, his calorie intake and at what time he drank every drop all the way back to May after he was discharged from the hospital.
So here we are bringing a bunch of news that doesn’t seem to be the best of news. But we are rejoicing that we are now going to be able to see our little guy begin to thrive, and get the nutrition he needs to grow…to sit up…to crawl. You know all of the things that I have taken for granted with all of our other babies. When Jonah rolled over we rejoiced! When Jonah could control his head we rejoiced! When Jonah sits up, we’ll rejoice! We know how hard he has to work for these milestones…and when he conquers them we’ll continue to rejoice!
I truly long to be with my little Jonah everyday, he truly inspires me! When I get home and he’s laying on his mommy’s shoulder or in his crib I’ll say “hi Jonah” and he’ll pop up his little head and bust out a huge smile. He keeps everything in perspective. The little things that seemed so important before aren’t. You see, God has granted me the privilege, yes the privilege to raise Jonah. To be an advocate for Jonah. To protect Jonah. To love Jonah. Each day I wake up to new challenges and a new day to see what God has in store for him and us.
To finalize this note, Jonah will be getting his feeding tube this coming Friday morning (3/9). We pray that this is what he needs to begin to thrive. We are caught in a tough spot for him, on one hand we want to see him thrive, but we also don’t want to feel like we are ‘pushing’ him either. We will continue to be patient and give Jonah every chance to thrive in his timing, but at the same time being diligent to do everything we can to help him move forward. Getting the feeding tube will require a surgery. We have been told that this is a minor surgery (should take about 15-20 minutes once they get started), but with Jonah’s current condition any surgery is risky as he will be put under general anesthesia.
Please just keep this little guy in your prayers this week. God is good!