Before I start rambling, let’s just talk about how much Jake and I have laughed at the chaos over the last 24 hours. Between all of us we have gone through 14 outfits today- and no- no one is sick…just a typical day in Carroll land. Jake has earned a badge of honor for changing his first blowout diaper for Levi, which Malachi (and mommy) thought was pretty funny.
We feel like we might possibly be losing our minds, a theory that was verified 30 minutes ago when Jake was putting Malachi’s pajamas on and instinctively tried to put Malachi’s shirt over his own head. I laughed so hard I had tears rolling down my face. The mental image of Jake having a tiny toddler shirt wedged over his face as he mumbled “What am I doing?” will forever bring me joy.
The fact that we manage to accomplish anything in a single day is completely mesmerizing. Let alone get everyone dressed and to church (almost) on time!
This week we tackled some pretty big appointments, so let me start off with some medical updates!
I took both boys to see the gastroenterologist (GI) doctor on Wednesday. I asked him which kid he wanted to talk about first and he said: “Let’s talk about the less complicated one” and pointed to Malachi. That made me laugh to myself as I would have never imagined that Malachi would ever be labeled as my “less complicated” child.
Malachi has obviously lost a lot of weight over the last 6 months as our time has been split between both boys needs. While the doctor is concerned, he also understands the reasons why and trusts that we will be able to pack the pounds back on now that we are home. He weighed in at 26 pounds, and his last weigh in 6 months ago he was 40 pounds. Yikes!
Then we got to Levi. Each time we see a new specialist I start over with my summary of our journey so far, and each new doctor is absolutely fascinated by the different things we have done to keep him trach free. Unlike brother Malachi, Levi has packed on some weight since we have been home and gained over 2 pounds in one month (He is just shy of 12 pounds)! The doctor and I agreed that we may be too aggressive with catching him up physically to his peers so we adjusted the rate that his feeds go in at. Now he is being fed 18 hours throughout the day instead of 20. We get to choose which 6 hours we take him off, so I usually reserve those for quick trips to drop Malachi off at school as it is one less piece of equipment to pack and prep.
At the end of the appointment the GI doc said “I have to be honest with you. I was expecting a different kid after reading through his medical history.” This comment caught me off guard and I pressed him as to what he was expecting. He replied “A kid like Malachi.”
It seems that his medical records focus pretty intensely on his areas of brain damage. I am not quite sure how to feel about that. Doctors in Cincinnati told me that there is about a 10% chance of some minor disabilities caused by the brain damage and Chattanooga neurologists say about a 25% chance of cerebral palsy. Either way, Jake and I choose to believe he will not be affected at all and treat it as a secondary diagnosis that isn’t even worth mentioning to many of these specialists as it does not affect their treatment routes.
The following day was a big one as we headed back to Chattanooga to tackle a few more appointments between the boys.
We started out at the pulmonologist for Levi. This is the doctor that will be in charge of making decisions about his oxygen support needs. We had spoken with this doctor extensively prior to being transferred to Cincinnati and I was looking forward to showing him the new and improved Levi haha.
He came into the room with a smile on his face, telling me how much he had been looking forward to this appointment. He said he was looking over his patient list for the day as he drank his coffee and when he saw Levi’s name he was ecstatic. He had a notepad with him and wrote down as many details as he could as I told him each step of Levi’s care in Cincinnati. After 45 minutes we still had not made a dent in anything other than a medical summary and he had to go do a procedure so he asked to meet again on one of his days off. I explained to him that if there was anything at all we could do to create another option for children in the future with bilateral vocal cord paralysis we would be very interested in helping.
I had brought pictures from every throat scope Levi had as well as a full article about the procedures we had tried. He asked to scan them all in so he could review them before we met again and couldn’t wait to see the difference that each procedure made. Overall it was a great appointment!
We agreed to leave Levi on oxygen for a bit longer, and down the road we will discuss weaning his oxygen requirements during the day time. As I told him, he truthfully doesn’t require it during the day. But there is no reason to mess with weaning it right now as everyone is still in a “watch and wait” mentality.
Our best takeaway from the appointment is that he is going to create a complex care plan for Levi that we will keep with us wherever we go. If for some reason we end up in an emergency room or hospital that is not familiar with Levi, it will give them a step by step plan on how to treat him from an oxygen/airway standpoint. One of my biggest fears is entering a medical environment that doesn’t know Levi and overreacts, putting him back on a ventilator when he doesn’t really need it.
After that appointment we raced down the hall to Malachi’s neurology appointment. Not a lot of updates from that, but they did decide to check his medication levels and do a blood workup to make sure they aren’t impacting other areas of his body. In the past some of the medications he was on were messing with his kidney function, so it is good to check those periodically. The GI doctor had also written an order to check his Vitamin D levels since he has lost so much weight, so off to the blood lab we went.
We protect Malachi pretty well from experiencing pain, so when it does happen it is a foreign concept to him. He has horrible veins from being born so premature and requiring them to be used so often for medications through IVs. This time around was no different and it took three sticks to get what they needed. Each time they stuck him he would wince with pain for just a second and then look at the nurse inflicting the pain and smile. Little goober haha. I just love his precious, forgiving heart.
Finally, we stopped by the NICU for a visit with our friends! Luckily one of Levi’s primary nurses was working and it was nice to reconnect. We will forever adore the staff at the TC Thompson NICU. They have played such a big role in both of my children’s lives.
After our long morning at the hospital we went to meet up with our Chick-Fil-A friends! Yes, I know…very ambitious of me…but I needed something non-medical to look forward to.
If you are new to the blog, almost exactly one year ago I was pregnant with Levi and absolutely sick but starving. Malachi and I had been at the hospital all morning for appointments and were racing across town to another appointment that we were severely late for. All I knew is my body (aka a growing Levi) needed some protein! We whipped into the parking lot of the Chick-Fil-A in Chattanooga and found the drive thru line wrapped around the building. I was so exasperated and started to leave, but decided that by golly we were going to get some chicken. Malachi needed to eat too which is a long process so we parked and headed inside.
While we were there we had a very special encounter with a mom and her three children. I later posted about it on my Facebook “To the mom of three…” to encourage others with young children to teach them that differences are not something to fear, just as this mother had. The post went viral, much to our surprise. It was shared by thousands of people and the mom we met that day happened to see it and messaged me. The rest is history…Chick-Fil-A filmed a reunion with the mom and her kids and we have developed a pretty special friendship.
Here is a link to the story and a video of our reunion last summer:
It is absolutely amazing how God aligns our lives with others. And Malachi was absolutely giddy to see his friends again.
Levi has decided that the oxygen life is just not for him. He has managed to pull his nasal canula off more times than I can count, regardless of the type of tape I use. Each time he yanks it off he cries out in pain, not piecing together that he is the one inflicting it on himself. Then he smiles sheepishly at his accomplishment.
This morning at church we did something called cardboard testimonies. While a song plays a line of people one by one stand up on stage and hold up a piece of cardboard (front and back) with a few words testimony on it. Malachi and I participated and I thought I would share his with you.
I know I say it a lot, but he is just the most precious little soul. He loves church more than anyone I know. He loves every single piece about it…the people, the prayers, the music, even the preaching. Oh boy does he love when they talk about God.
This morning they sang “God’s Not Dead” and I watched him process the new-to-him song. He was clinging to every word and out of the blue he let out a ROAR. I was confused a bit until I realized that one of the repetitive lines in the song says “He’s roaring like a lion”. Malachi is so much smarter than we even know!
I got this picture from his teacher at school this week! He was able to go for a shortened day Monday due to therapy and all day Tuesday and Friday.
And little Levi and mom got to spend some special one on one time, working hard on sitting up.
I have been focused on some pretty heavy thoughts this week, brought about by unlikely things.
Just last week I was sharing with you about how wonderful it was to be back home and able to witness nature, and particularly the birds. I have been watching this past month as a mother bird has skillfully crafted a beautiful nest on the top of one of the columns on our front porch. Throughout the day I pass momma bird as I go in and out of the house, each time trying to be as quiet and predictable as possible so she wouldn’t be interrupted in her duties as a momma.
I know this sounds silly, but I have formed a bond with this little momma bird. I connected with her as she toiled day after day to prepare a world for her babies.
On Friday I went to take a bag of trash outside and glanced up to make sure I wasn’t going to interrupt momma bird. She was not on the nest so I headed toward the trash bins. My heart sank when I looked down and saw a newborn baby bird laying on the concrete, clearly no longer living. I went to take another step and noticed another newborn bird was also on the concrete, but this one was still breathing.
As I watched that translucent little body struggle to breathe I flashed back to watching my sweet little Malachi and grew nauseous. As my mind watched its little body move up and down with each hard breath it transitioned to memories of watching Levi as his body worked so hard to breathe.
I actually thought I was going to throw up as I processed what to do. I stood up to go get some gloves and found yet another newborn bird in the driveway, this one too was in worse shape than the other but still alive.
I put on gloves and put the living ones back into the nest, hoping that they could be saved. I anxiously waited to see if momma bird would return and sure enough she came back to fulfill her duties and keep those babies warm. Unfortunately after not seeing momma bird today I had Jake check the nest and none of the babies had survived.
And all day I have been mourning those stinking baby birds. Ugh I hate cliches, but it brought to mind Matthew 10:
29 What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without your Father knowing it.30 And the very hairs on your head are all numbered. 31 So don’t be afraid; you are more valuable to God than a whole flock of sparrows.
Tonight as I sat and thought about their little bodies once again, I tried to pinpoint why I was so affected by them, aside from the fact that they were vivid reminders of my boy’s early days. And my heart continued to break for that mother bird.
But I was also reminded that God was aware of those baby birds and their struggle. And as the Bible reminds us, we are so much more valuable to God than those birds. I know He is watching my boys and has their lives planned out from conception to their final breath, and I have to find comfort in knowing that they will remain on this earth until God decides to call them home.
I have been worrying about death a lot lately. Which can be dangerous when you have a medically fragile child. Too many what ifs.
My heart has been raw this month as I have watched two little boys in my support groups, very similar to Malachi in age and diagnoses, pass away. I can’t help but put myself in the shoes of their mothers as they deal with such a huge heartbreaking loss.
Suffering is so incredibly hard to process as a Christian. We live in such a broken world. But as a Christian I also have incredible things to focus my eyes on…
“Then I saw a new heaven and a new earth, for the old heaven and the old earth had disappeared. And the sea was also gone. And I saw the holy city, the new Jerusalem, coming down from God out of heaven like a bride beautifully dressed for her husband. I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”
I feel like I haven’t been a good steward of the blog this week and communicated something more relatable for you all. I will be praying that God lays something HUGE on my heart to share with you next week.
Keep me in your prayers as I process a lot of emotions these days.
This morning I had to take Levi out of the church service as his breathing seemed a little too distracting. Two other moms had also stepped out with their babies and we all sat in the lobby area with our little ones. I watched as they each breastfed their children- mothering them the way God intended, and caught myself looking down in shame at the tubes that fed my child. I suddenly felt so out of place. And different. Unworthy of the title.
It is in those moments that I see the devil hard at work, creating insecurities in me and exploiting my weaknesses. What a crafty serpent he can be. In the end, being a mother is so much more than how you feed your child.
Pray that God increases my awareness and that I am able to see and deal with these attacks before they strike.
And continue to pray for my sweet boys. Pray that Levi’s vocal cords suddenly wake up and he is able to function 100% normally. Pray that Malachi’s brain is restored and made whole and all seizures stop immediately. And continue to pray for wisdom for Jake and I as we care for such special children of God.