As I sit by Levi’s bedside typing this update, two words keep coming to mind in regards to my emotions: weary and fragile. I am feeling so incredibly defeated this week as we continue to process Levi’s complicated road.
This week as I left the hospital I noticed that there was something salty on my lips. I couldn’t figure out what it could have been since I hadn’t eaten anything that day. Then it finally hit me…I had kissed little Levi’s forehead…a forehead that at some point during the night had beaded up with salty sweat as he cried.
Babies are meant to be held, loved, comforted, and consoled. They are supposed to wake up and find a face they know smiling brightly at them and telling them how much they are loved. They are supposed to be picked up and played with, allowing their little brains to grow that much wiser and more aware. They are supposed to be showered generously with kisses.
The fact that I can’t tell you when he got so upset that sweat poured from his brow, or why, or how long he stayed like that before someone went to comfort him just breaks my heart.
An incredibly brief summary of our road so far: Levi was born at 34 weeks and we found out he had congenital bilateral vocal cord paralysis. We were told that he would need a trach and most likely a g-tube and there would be a 50% chance he would require the trach for the rest of his life. We chose to bring him to Cincinnati to try an experimental procedure to avoid a trach, and he is the smallest and youngest to have this done EVER.
Our original plan was that we were going to come to Cincinnati (after spending a month in Chattanooga), have the procedure done, heal within two weeks, conquer feeds, and go home after about a month.
After a few weeks the experimental procedure was finally declared “successful”! We were thrilled and ready to work on feeds and get this beautiful boy home.
Then he started vomiting frequently and we discovered a new tummy issue called pyloric stenosis that required surgery. It has also been declared “successful” and we were back on route to conquering feeds.
Cincinnati Children’s Hospital is a GREAT hospital. We are so impressed by the way things are so efficiently run and the state of the art technology. We have been inpatient in 4 different children’s hospitals between both boys and this one has blown us away. But the larger the hospital the less continuity of care.
Let me explain that a bit…
There are so many different neonatologists, residents, fellows, nurse practitioners, nurses, etc at Cincinnati Childrens. For a typical patient I think this is a good thing…fresh eyes and fresh ideas. But for Levi this has become our nightmare. Levi still has his stridor (and is expected to for several months/years) and each new set of eyes and ears that sees and hears him reacts in a panicky way. I can’t tell you how many times I have heard “Does he always sound like THAT?!?” He even brings in nurses from the hallway that are simply walking by, concerned enough to stop and ask if he is okay and if we need help.
Here is a video from this week:
This is where I come in. Each day I try to sit by his bedside as often as possible to help care for him and teach each new person about Levi. I have put up signs in his room to help them understand him a bit better. I call frequently during the times I am with Malachi and try to keep connected enough that everyone feels comfortable caring for my son, noisy breathing and all.
We have been very blessed to have three amazing “primaries”, who are nurses that have signed up for Levi’s care team. Anytime any of them are on duty they are assigned to Levi and having one of them there brings me so much peace! Those are the days I allow myself to be more present with Malachi, something he also needs from his mommy.
Unfortunately on Thursday night a wrench was thrown into the plans when I got food poisoning from some chicken. Aside from being nauseous from that, I was so incredibly sick to my stomach about the thought of having to stay away from Levi for at least 24 hours (to rule out any other flu/stomach bug). I was even more nervous when I heard that he had a daytime nurse that had never had him before. I just knew in my gut something bad was going to happen.
Then the call came. The new-to-Levi nurse had decided that he was working too hard to breathe and the team decided to not only put him back on oxygen but that he needed to be sedated around the clock because he was “working so hard”. It wasn’t a discussion, but rather a decision that was made by a team that didn’t know him well.
And this is where the “weary and tired” words come in. Sigh.
I am feeling defeated these days, not only as Malachi and Levi’s mommy but as Levi’s advocate. Had I been present and able to show the nurse baseline videos then maybe these steps backwards wouldn’t have happened. Maybe I wouldn’t have had to sit by a sedated child today instead of my full of life sweet little boy who loves to play when mommy visits.
Let’s switch to medical updates.
Levi had another procedure on Tuesday to look at his airway. The good news is the first surgery seems to still be successful. His airway still looked nice and wide, and only had one small area of narrowing in the back. They went ahead and did a balloon dilation to pop open that scar tissue but she said it wasn’t really even bad enough to require it- they just figured they would do that while they were in there.
Here is a visual for you from before the dilation and after:
The bad news is that she discovered a brand new airway issue that Levi has recently developed called laryngomalacia. It is another congenital issue that usually appears by 5 weeks old (Levi’s corrected age right now). This is a very common issue in children and is actually the number 1 cause of stridor in kids. Most times you can leave it alone and it will self resolve within the first two years. But unfortunately Levi’s is already a “moderate to severe” case and on top of his paralyzed vocal cords issue something has to be done.
Tomorrow morning at 8:15 Levi will be having yet another procedure called a supraglottoplasty. They will be trimming part of his epiglottis so it cant flop over onto his airway and block it. This won’t completely eliminate the stridor but it may lessen it a bit. It will also keep him from completely collapsing over his airway when he gets super agitated.
But unfortunately it doesn’t stop there.
We are also told that this procedure will set him back even more with his oral feeds. He did go down on Friday for the much anticipated swallow study and he wouldn’t drink the barium from the bottle. I don’t blame him- most people say it tastes like chalk! They then mixed in a little formula but by then he was suspicious and did not want anything to do with the bottle.
They are telling me that it will be several months before Levi will be able to get to full feeds by bottle, and at least 4-6 weeks before they would do another swallow study. Jake and I have made the decision to put a g-tube in Levi so we can get him home and thriving. We will work on feeds from there with the goal being to get the g-tube out within a year.
I spoke with the surgeon this evening and they are planning to schedule the surgery for this week. So two big surgeries for little Levi this week, but hoping to see some major changes in him. Maybe even major enough that ALL of the personnel working with Levi will feel more comfortable with caring for him.
Jake ended up with a head cold this week and wasn’t able to make the trip up to visit us this weekend. I have been trying to FaceTime with him and the boys as much as possible and snapped these pictures of Levi when he was listening to daddy on the phone. The quality is poor but look at that sweet, excited face!
This week I had something very strange happen in my spiritual life; it was the first time it had ever happened and the devil almost got away with it.
In the New Testament we read about the temptation of Jesus in the desert. It says that after 40 days and nights of fasting he was hungry, and it was THEN that the devil came to tempt Jesus.
This fact alone is a profound reminder to me the devil is one smart character and will wait until our moments of weakness to strike. He waited until Christ was feeling the pain of hunger to come and tempt him with food.
But that isn’t the part of the story that gets me…
One of the most fascinating things about the temptation of Christ in the desert is the way in which the devil chose to try and tempt Jesus. He used scripture!
This week I had my desert moment. All week long I couldn’t get this scripture out of my mind:
3 Children are a gift from the Lord;
they are a reward from him.
4 Children born to a young man
are like arrows in a warrior’s hands.
5 How joyful is the man whose quiver is full of them!
He will not be put to shame when he confronts his accusers at the city gates.
A quick note: a “quiver” is a container that an archer wears on his back to store his arrows.
Before I go on I need to warn you that you are about to see the dark side of my mind- something I often try to drown out and not focus on. And I am actually embarrassed to share this with you. But I feel so strongly that my moments of weakness can serve as encouragement in your Christian walk.
Chunks of these verses played over and over again in my mind and I finally had a chance to pull it up and read it. As I read the verses I scoffed to myself at the words. I caught myself saying how is THIS a ‘reward’ from the Lord?
I have spent the last five years watching not just one child but now TWO suffer more than any child should have to. I have held the hands of two frightened and traumatized little boys as they have more and more tests, blood draws, IVs, procedures. I have told them that everything will be okay, when the truth is I too am dreading what is about to happen to them.
How is this a reward? To watch so much suffering and see so much pain and not be able to take it from them?
And then as I continued to read I came to the part that said “How joyful is the man whose quiver is full of them.”
As I read that I couldn’t help but picture that family Jake and I always imagined we would have. Those four boys, all close in age. Those four healthy, crazy boys who were going to make our quiver full. Daughter-in-laws. Grandkids. A legacy.
I have typed this next paragraph a few times because it sounds so terrible each time I read it aloud. But I guess I will keep going with my honesty here…as I thought about our quiver I couldn’t help but wonder why the arrows that God placed in it were so damaged. Why were they so broken? Why aren’t our arrows like all the other warrior’s arrows, ready to be sent out flying into the world?
I dwelt on this concept for a few days, mourning our sad, roomy, and less than perfect quiver. And then I realized that Satan had used his crafty technique yet again and tested me with the words of God and I immediately felt foolish.
With my new, corrected lenses I started to look again at the scripture and apply it in my life. And I came to the realization that it is not my job to evaluate the arrows in my quiver and ask why. It is not my job to question why there are only two arrows in there. It is not my job to determine whether those arrows are ready to fly and pierce.
But it IS my job to protect the arrows in my quiver and to wear them proudly on my back. It IS my job to keep them safely tucked into the quiver until God decides they are ready to be sent out into the world. It IS my job to talk to you about these precious, beautifully unique arrows and allow the power of their testimonies to do the piercing.
So my focus this week is admiring and reveling in the uniqueness of my arrows. What some may see as “broken” I will choose to see as “still being crafted to perfection”.
Please remember our family in your prayers this week as we deal with some big days ahead. Pray that Levi has a week of continuity in his care and that the nurses assigned to him are all comfortable and familiar enough to be his advocate. Please continue to pray for wisdom as Jake and I make life altering decisions for both of our boys.
Next week is Malachi’s 5th birthday, so let me forewarn you to expect some emotional ramblings on the blog about his beautiful little soul. It is inevitable.