It feels like ages since my last post as I think about all of the activity that has happened between then and now. First of all, let’s all take a second to enjoy this tube free picture of Levi:
There are several noteworthy updates from our week, so we will start with the most recent one.
This morning Levi headed to the operating room for surgery on his stomach. Surprise! This issue was completely unrelated to his throat issues and blindsided us a bit. Last week we noticed that he was not tolerating his feeds well and throughout the week things got worse. They ended up stopping all feeds into his stomach and kept them going into his intestines, but last night he still threw up 10 times in just a few hours.
After doing several ultrasounds they discovered that Levi has something called pyloric stenosis. In basic terms, there is a channel at the bottom of the stomach that food has to pass through to get into the small intestine; this channel is called the pylorus. Sometimes the pylorus gets too long and thick to function properly and this develops usually between 3-5 weeks of life.
One of the biggest symptoms of pyloric stenosis is projectile vomiting, and sure enough that was exactly what Levi was doing. A normal pylorus is 14mm long and 2-3mm thick; Levi’s ultrasound showed that his pylorus was 21mm long and 5mm thick. In order to let food pass through this channel the surgeon had to make an incision through it. They were able to do this as laparoscopic procedure so his outside incisions are tiny…just two in his abdomen and one in his belly button.
The surgeons wanted to get him in as quickly as possible and worked him into the schedule for Sunday morning. Levi recovered well and has only required one dose of morphine. He is still needing regular doses of Tylenol but overall he is doing great post-op. They have started him on feeds into his belly and so far so good! Only one spit up all day!
Here are a few silly pictures of Levi’s sleeping poses this week:
Levi was also in the operating room this week for his follow up bronchoscopy. I am so thrilled to tell you that the airway has stayed open and didn’t require any further intervention! We have been cleared by ENT for 3-4 weeks so as soon as we conquer these feeds we can get back to some normalcy. We are hoping that today’s surprise surgery will help us get a few steps closer to that goal.
Here are two sweet videos for you of baby Levi; the first shows you how wiggly and active he is and the second captures a long and loud poop haha:
Not only are we rejoicing over progress via surgeries, but Levi has been a rockstar this week with his oxygen wean. He is no longer on any form of oxygen and is breathing just fine. He is still holding great oxygen numbers, even when he is mad. He will retract a bit when he is super angry but his oxygen saturation is still 97-100!
Here is a video of his retractions when he is upset- they are still present but not as bad as pre-op:
The ENT surgeon is absolutely shocked at how well Levi is breathing after his cricoid split. She pointed out that he has had 2 tubes (NJ and NG) down his throat for the week and he is still having zero issues- she explained that most kids who have the split surgery have really struggled breathing with just one of those tubes down their throat. She was very encouraged by this, so we are too!
This week I was able to meet with Cincinnati’s neurologists and discuss the brain damage that we found in Chattanooga. They went over the MRI with me and agreed that yes, there are a few spots of brain damage on the images. They assured me that the areas are very small and that the chances of this impacting him long term in physical and mental ways was about 25%.
They said it would be a good idea to be followed by a neurologist (no worries- we know them all haha) but that the extent of the damage would not manifest for a little while. They also said just watch for missed milestones along the way.
The most interesting thing about our conversation is that they aged the spots of damage as being within a few days of the MRI. Levi was 2 weeks old when the MRI was taken and had spent the entire time in the NICU. They had trialed room air with him at exactly one week old (when they still thought the stridor was birth related and not congenital) but other than those few hours he has been on oxygen his whole life. They said it could take just a few minutes of oxygen deprivation or desaturations to cause a spot the size of Levi’s.
But the Cincinnati neurologists are confident that the damage was not caused at birth. They also encouraged me to pursue follow ups at 6 months with Levi’s hematologist to rule out clotting issues.
Our Family Update:
Everyone in the Carroll clan is finally healthy and functioning at 100%. A lot of people have been asking about my blood clot- there are no new updates there. I am just cautious and careful to make sure to continue doing my twice daily injections of blood thinners to prevent more clots from forming. I will go back in March for a follow up to see if the current clot is gone.
Jake was supposed to go back to work (in Tennessee) this past Wednesday afternoon but his school system closed for the remainder of the week due to the cold temperatures. We were thrilled to have him around for an extra few days!
Here is a video of Malachi laughing like a wild man. He has been laughing like this when he wakes up at 4am:
Jake will be in Tennessee until this weekend when he will come home for a few days. Life is now tricky as I am trying to manage time with Malachi (as well as feeds and medications), time with Levi, time for pumping, and time for sleeping and eating. Thankfully a friend from Tennessee drove up this weekend and is staying with me at the Ronald House to help out with Malachi. It has been a huge blessing to be able to still run across the street to visit with Levi whenever possible…especially on a day like this when I had a three minute heads up before they took him to surgery. Yikes!
Our needs are met for the time being. The Ronald House provides lunch and dinner every day and there are laundry rooms throughout the house. I made it to the store this afternoon to stock up on any other needs we forsee as I will lose my consistent help after this week.
We have had lots of people offer to help with Malachi and we will definitely be leaning on those generous folks next week! We are just taking it all day by day for now as we are still trying to get a good picture of what the next few weeks will hold.
I told the neonatologist this week that my goal was to get us home by February and she told me that was “an unreasonable and unrealistic goal”. I am not going to lie- I had to step into one of the pumping rooms to shed a few tears over that comment, but now I am just resolved to prove her wrong. Game on doc.
I have been back and forth trying to decide what route to take the devotional part of this post. As I have prayed and read through the Bible this week I have struggled feeling led in a certain direction, so I will take today’s post a slightly different direction.
Let me take some time to tell you about something I am struggling with- maybe someone else is also struggling with this too.
I am never felt so alone in my entire life. And no, this has nothing to do with the number of people around me, or loneliness due to a lack of people reaching out but it has more to do with feeling alone in my struggles. Often this loneliness hits me like a hammer…
Today it hit me so incredibly hard as I sat in an empty waiting room. I had just handed off my 7 week old son to undergo his 2nd big surgery (15th surgery if you count Malachi’s). It was a Sunday morning- a day that they reserve the operating room for surgeries that can’t wait another day- and here I sat alone.
As I looked around at all the empty seats I found myself thinking about the world that many of you live in…a world with weekends…an opportunity for life to stop momentarily and give you a break from the stresses of life.
A world that is free from medical needs, surgeries, Ronald McDonald Houses, insurance battles, and the list can go on and on. I found myself feeling so alone as my day to day struggles and sadness are so unique and different than yours.
And my heart aches in this battle, not for my loss of normal, but for my children. Any mom reading this will wholeheartedly agree that seeing your children suffer is absolutely heartbreaking.
As I sat in that empty room today I remembered a name that Hagar gave to God in Genesis: “El Roi” which means “the God who sees”. I caught myself wondering if God saw this broken, tired, and defeated momma sitting in the waiting room?
As I thought about this name for God it served as a much needed reminder to me that even in times when I feel alone, God is very present and near. My struggles are never hidden from Him, and He IS the God who sees.
He sees my heart break each and every time I hand off one of my children to a surgeon.
He sees me crying alone in the pumping room, then trying to put myself back together before I speak with my son’s doctors about the next steps in his care.
He sees me in the air ambulance, flying over Chattanooga at midnight and staring teary eyed at the lights below, wondering why it is MY son on the stretcher headed north for experimental surgeries.
He sees the lump form in my throat each time Malachi’s seizures overtake his body in such an unnatural yet unstoppable way.
He sees me in my pain…but He also meets me in it.
“For I have chosen you and will not throw you away. Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.” (Isaiah 41:9-10)
As I read this verse in the waiting room, that first sentence kept catching my eye. It was my much needed reminder that God has chosen me for this life. He has chosen me for these boys. And He is a loving God who does not find joy in seeing my pain…but He is a God who is able to see a bigger plan that I cannot yet see.
Today during Levi’s surgery I was reading through the story of the Children of Israel fleeing Egypt. I thought about them doing their victory walk away from Pharoh and the Egyptians, feeling like a million bucks as they knew God was on their side.
Then Moses walked them to the edge of the Red Sea- a literal and figurative barrier to the Promised Land they were hoping to reach. Ouch. In a single instant that confidence melted into panic as they looked at the barriers they faced.
WOW! I have totally 100% felt that way in the last few months. I feel so strongly that God has led our family to Cincinnati- then BAM- Red Sea moments everywhere. Transports gone wrong. Voice quality struggles for Levi. Sickness. Car troubles. Vomiting. Surprise surgeries. Red Sea moments left and right. And just like the Israelites did I too found myself panicking and questioning whether we made the right decision.
But God is “El Roi”. He sees. He saw the Israelites that day, and He sees us in our struggles too.
In Exodus 14:14 Moses tells the Israelites: “The Lord will fight for you; you need only to be still.”
So in those Red Sea moments, when I am feeling alone and unseen, I will be doing my best to simply be still and remember that God chose me for this mission. And I will continue to trust that each and every barrier we encounter can be overcome by a Lord that will fight for me.
When you choose to become a child of God you are never alone. He sees. And He cares. WAY more than we like to acknowledge.
But we also have to remember that unlike our human eyes, He can see what is on the other side of the Red Sea. And when the time is right He can and will part those waters and we will walk on dry land.
As I read these verses in the waiting room today I felt overcome by the presence of God. Sometimes it just takes us simply being still to help us focus on how near He truly is to the brokenhearted.