Good golly Miss Molly. I am absolutely convinced that the devil has amped up his attacks against our family. I don’t know if you have ever sensed that in your lives, but the feeling hit me mid week and I just can’t shake it.
Before we flow into the negatives from the week, let’s focus on a positive! We celebrated Levi’s first birthday on Wednesday! I have some fun pictures to share with you.
And then there is this video- it makes me smile so big. Levi gets very shy and hides under blankets. He wasn’t quite sure about us singing to him and got very uncomfortable, trying to hide under the blanket tucked behind him. Here is the video:
Okay, now on to our challenging week.
The boys continued to progress in the negative direction with their colds. By Monday I felt that both boys needed to get checked out to make sure their lungs were still clear from infection. Levi doesn’t have much of an airway so any and all drainage that blocked that tiny opening would trigger his gag reflex and he would vomit. I know it sounds like I am exaggerating, but Levi was literally throwing up over 25 times a day, with half of those being at night. This is a very scary situation for multiple reasons…
For you and I, our brain can tell our vocal cords to close and keep the vomit from going to our lungs. Levi’s vocal cords are paralyzed so he is unable to protect his airway. I had to stay within arms reach of him at all times and snatch him up and forward when he started to wretch to keep him from aspirating (taking it to his lungs). There were three nights this week that he was getting up consistently every 45 minutes to vomit due to postnasal drip. My nerves were absolutely shot from the pressure of keeping him from aspirating.
On Sunday night I wasn’t able to get him up in time and he swallowed a bit of vomit. His oxygen saturations dropped and his heart rate started to go up a little too high for my comfort thus prompting the trip to the pediatrician. Thankfully both boys lungs sounded clear enough to avoid even chest x-rays. Malachi is almost completely back to normal and Levi is symptom free but still struggling with phlegm. Today he has thrown up 12 times. With all that vomiting dehydration has been a serious concern all week.
We were making some positive steps in the right direction until last night. Levi went to bed and Jake and I both agreed we thought this would be his best night of sleep all week. Within the hour he turned into a maniac. Either he was bit by a rabid raccoon or something was causing some serious pain, so I got up with him around 12:30 to try to calm him down. And he NEVER went back to sleep…just screamed until he vomited over and over. Then he started running a fever. When sunrise rolled around I made the plan to take him in to an urgent care in the town close to us (30 minutes away) right when they opened and if it wasn’t something simple then I would make the trip to the ER (an hour away).
We were were turned down by 3 urgent care places before I finally found one that would simply check his ears and listen to his lungs. I didn’t feel like whatever was going on was too bad yet as the fevers were low grade and I was feeling confident it was an ear infection….taking him straight to the ER would just expose him to something bigger when he was already weak. But the fourth place agreed to take a look and a listen and sure enough Levi has a nasty ear infection in one ear and he start of one in the other. He is back on antibiotics…we just finished the last round last week so going back on is discouraging, especially leading into a surgery week.
As crazy as it sounds, we proceeded with our Nasvhille pre-op trip. I called beforehand and explained the situation and they said to bring Malachi anyway with the hope he would be good enough by this week to operate. Malachi, Levi, and I loaded up late Monday and made the drive to a hotel just outside of Nashville. I had researched lots of hotels and found one that would suit our needs but I have to tell you I was blown away by how perfect the room was for our situation. It was fully handicap accessible and had a living room area so I could safely get up with one boy while the other slept in the bedroom. There was a full kitchen with a dishwasher, sink, and a fridge, and a bathroom large enough for the stroller to fit in with ease.
I did my usual full room cleaning with clorox wipes before I put anything down. I don’t know that I express to you all how germ conscious we are. I routinely sanitize my debit card, cell phone daily, car keys, seat belt buttons….we are a little over the top but with weeks likes this I feel validated in being weird.
We arrived around 10:00 and I had both boys were asleep by 11:30. I had brought a stack of hand towels from home to catch Levi’s vomit and I cautiously dozed off to sleep. God was seriously looking out for me; for the first time all week, I got 5 straight hours of sleep. When Levi woke up and I saw the clock I almost started crying with thankfulness to God. The crew stayed up the rest of the morning and off to the hospital we went.
First stop was CT to get images of his hips and feet. Then we headed over to the orthopedic surgeon to discuss the images and the plan for surgery. He walked into the room and said “It is a good thing we got a CT scan today as we aren’t going to be able to do the surgery like we planned.” He started to show me the images and Malachi’s hip is severely out of socket. We knew it was out, but didn’t know how bad it was. The other hip is starting to do the same thing but isn’t bad yet.
In this picture you can see that his hip bone is rotated out and is nowhere near the socket like the other hip bone. Ouch.
The surgeon proceeded to talk about how we needed to change the surgery from a tendon lengthening to a femoral osteotomy. This is where they cut off the head of the femur bone on both hips. This surgery is incredibly painful and Malachi would be in a full body cast from his nipples to his toes for 6 months, casted in a frog leg position. Kids who have this surgery done typically lose around 15 pounds and regress tremendously with all of their physical progress and abilities.
We have discussed this surgery before, but we all agreed to wait to do this until it was absolutely necessary. Kids with full dislocations like Malachi have a 50% chance of developing pain and that is when the surgery becomes a non-negotiable. We definitely don’t want him to be in pain on a daily basis, but also don’t want to put him through the pain of this surgery if he will be on the good end of the 50% statistic (which our family typically is not).
So when the surgeon said we needed to change routes for surgery and do the osteotomy I felt like I had been sucker punched. I caught myself saying “WOAH WOAH WOAH that is not what we talked about!”
We talked at length about the options and by the end of the conversation both the surgeon and myself agreed that Malachi couldn’t handle an operation of that magnitude right now. We will still be going in and surgically lengthening and tightening some ligaments in his feet but we will not be touching his hips this time. This changes our stay to an outpatient procedure, assuming all goes as planned.
Malachi will be casted below the knees for about two months. We will be going back and forth to Vanderbilt quite a bit for follow ups and to get him fitted for braces again. The casts should be officially removed on January 2.
Malachi and I will be making the trip solo as Levi just needs to stay tucked in and comfortable at home. We will be driving up Monday afternoon so we can be there first thing Tuesday morning. His surgery is scheduled to start right around lunchtime but pre-op nonsense will require us to be there pretty early.
After the appointment with the surgeon we headed to the appointment with the PATCH team (anesthesia). By this time Levi had thrown up mucus 8 times and my nerves were shot from discussing the potential of a massive operation. We went through all of the typical anesthesia questions and Malachi’s medical history. After a few minutes the man said “You seem to be handling all of this very well.” To which I simply replied “This is surgery number 35 for me…you aren’t going to say anything I haven’t heard many many times.”
Before we left he smirked and said “So based on that conversation I am going to guess that you have a medical background.” I replied: “Nope, just a mom trying to give her kids the best life they can have.”
We packed up and headed towards home which should have only taken 4 hours but with the pouring down rain and heavy traffic it took us almost 6 hours to get home. And to be honest it was truly a struggle for me. After the first hour my eyes were taking longer to come back open after each blink so I cranked up the A/C in the front half of the car and got some caffeine to fuel me! I am going to try to download some Podcasts for the upcoming trip to help keep me more focused.
The next day we headed to Levi’s eye appointment. To recap, our first appointment a few months ago did not go as I had hoped and the doctor said Levi would need surgery on his eyes. I cried and had an emotional breakdown haha, then scheduled an appointment with another eye doctor for a second opinion. The day before that appointment they called and said that the doctor had decided to go on maternity leave and we would need to reschedule with another one of their eye doctors. That appointment was this past Thursday.
This eye doctor confirmed what the other one had said. Levi’s eye muscles are having a hard time keeping up, and the culprit is his spots of brain damage. This is where it gets really discouraging…surgery is the only way to correct it and there is zero guarantee that it will hold. There is actually a high chance we will have to continue to do these surgeries over and over again as the real problem is his brain and not his eyes. The surgery sounds awful as they peel back the top layer of the eye to get to the muscles, then sew that layer back on. His eyes will be bloody looking for almost a month, and will take 3 months to return to normal. And again, all of this is not guaranteed to work.
The surgery needs to be done before the age of two to prevent depth perception issues. Without the surgery his eyesight will be significantly compromised. Ugh.
My mommy heart knows we have to do this stupid surgery to give Levi a chance at normal later on in life, but each time my kids have to suffer my heart breaks more and more. I am still pretending to be in denial and have asked to speak to another doctor to get a third opinion before we schedule surgery. We will be meeting with her in January.
On Friday I loaded up the boys again and we made the drive to the children’s hospital for Levi’s first synagis shot. Synagis is a medication that will lessen the severity of RSV should be contract it this winter. He has to get one of these shots every month, but we are so grateful for them! It is difficult to get insurance to approve them so it is almost like a victory in itself that they didn’t fight us on this one. I wish I could be a fly on the wall of the insurance company as they discuss our family haha!
Levi obviously cried his eyes out after the shot; we are told the medication stings as it goes in much worse than any immunization.
Malachi has been in an ornery mood this week. I brought him in from the car and set him in his seat and he had a sly smile on his face. I have seen that smile before and knows it means he is up to no good so I told him “Malachi, DO NOT fling out of that seat!” He smiled again, and I said “Malachi, I am serious!” I went out to get Levi from the car and when I came back in I heard a thump. I ran over to find Malachi had dove head first out of his seat and was essentially doing a headstand with his but still partially in his seat. On the way down he had grabbed his tummy tube and pulled the cap off so he was upsidedown and COVERED in his stomach contents.
Y’all this is where I need some prayer. I am embarrassed to admit this, but I am absolutely disgusted by Malachi’s stomach tube. Now Levi has one too, but Malachi’s is just so different. Malachi’s surgery site is still leaky and gets stinky throughout the day. And his tube is always dangling out from under his shirt and since it is clear you can see his tummy juices in it. I have dealt with so many scars and wounds in the last five years, but this one is proving to be a challenge. I have dry heaved too many times to count this week!
But the biggest issue is that I find myself mourning over Malachi’s normal with this tube. I always want people to be comfortable talking to Malachi and being around him. But with this tube I watch people react as it is the first thing they see. I hate that we did something to Malachi that makes people cringe and look away. He will get this tube switched out in a few weeks, but I can’t stop being sad for him.
In addition to the visual yuckiness, Malachi cries every time we try to run anything through it. You can tell it is a very uncomfortable feeling for him so we are still feeding him by mouth like normal. Maybe time will help with that.
Alright let’s do this…let’s talk about Levi’s birthday…
There are times when I feel like a narcissist talking about myself so much. This is one of those entries. But this is an outlet for me to process my thoughts!
Leading up to Levi’s birth, Jake and I were so excited that God had blessed us with another baby boy. We talked about how much easier this round would be with a typical kid. I laughed about how odd it would feel to only have to go to the pediatrician for wellness checks, and not have specialists and therapies to worry about. It was going to be our chance for some normal.
I was high risk with Levi after the placental abruption I had with Malachi at just 24 weeks. I went to the doctor for monitoring, stress tests, and ultrasounds every Monday, Wednesday, and Friday. Everything on all of those tests and scans looked wonderful. He was measuring small, indicating my placenta was acting up again but he was healthy. Our goal was to make it to 36 weeks!
I dropped Malachi off at school that morning and headed to town to get some food for him. I met my mother for lunch and then it happened…I abrupted again. I drove myself over to the hospital, calling Jake and the doctor on the way, and tried to keep myself from having an emotional breakdown. It was a God thing that Malachi was not with me that day.
There were several concerns that we were focused on. The first was that I had taken blood thinners that morning. Operating while those are in your system is incredibly dangerous. The plan was for me to stop them a week prior to delivery but with this surprise that wasn’t possible. My clotting factors were coming back at dangerous levels.
The second big concern is that I had eaten within the hour. Anytime you do surgery on a full stomach the risk for vomiting and aspiration is high. We tried to delay as long as everyone was comfortable but as the minutes ticked by the doctors grew more and more nervous. We decided to go ahead and head to the Operating Room and put me under general anesthesia.
As we wheeled down the hall I fought hard against flashbacks from the night Malachi was born. This time around we weren’t running, but as those ceiling tiles flashed by over my head I got chills thinking back to that night. I remember when Malachi was born thinking that I needed to pray as we raced down the hall, and the words from Job were the ones that came to mind: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”
But this time around as I started those words they just didn’t feel right. I waited for the Holy Spirit to give me the words and I started to pray “The Lord bless you and keep you; the Lord make His face shine on you and be gracious to you; the Lord turn His face toward you and give you peace.” I wanted Levi to be enveloped in God’s peace.
This verse is the one we chose to bury under each of the boys rooms when we laid the foundation of our home. I have always felt that God has allowed His face to shine on Malachi, and I couldn’t think of a more perfect prayer for Levi.
Levi was born just before 6:00 that afternoon. And when 8:00 rolled around and even Jake had yet to lay eyes on him we all grew a little nervous.
We had prepped our hearts for a NICU stay prior to that day; we knew he would be small. He was 4 pounds 8 ounces at birth. The doctor came in to tell me that he needed a little help breathing, which didn’t alarm me as most preemies do. I was a little upset that he had to be put on the ventilator but not shocked. Jake went to meet him and brought me pictures. This was the first picture of Levi that I laid eyes on and I was overwhelmed with love.
I was terrified of Malachi when he was born- his skin was underdeveloped and translucent. They had prepped me that Malachi might not live through the night. I was so overwhelmingly scared that day.
But this time I felt joy. I felt excitement. He was so sweet.
They explained they would need to take him to the level 4 NICU that Malachi had spent 4 long months in, and as much as it broke my heart I had to watch them wheel Levi away shortly after meeting him.
I got to spend 6 sweet minutes with him before he left; here is a video of the first time I laid hands on him:
Malachi was fascinated by the whole ordeal, but didn’t seem to understand about the baby as he couldn’t hear him. But even with his poor eyesight, he searched for this baby brother everyone was telling him about.
I spent that night alone in a hospital room, listening to all the new moms around me gushing over their babies. My heart hurt so badly that night. I just wanted this time around to have a tinge of normal, but as the hours went on and my baby was 45 minutes away I felt like that opportunity was slipping away.
A week prior to having Levi I went and visited a friend that had just had a baby. We talked about breastfeeding and all the normal things new moms get to do. As we talked I felt this tenseness in my heart, knowing that I was possibly setting myself up for major disappointment. I tried not to long for normal, but so many times my heart and mind wandered towards that desire.
As the days and weeks went by we learned that this journey with Levi was meant to be anything but normal.
I think back to the unfolding of Levi’s diagnosis and the emotions that came with it. I went back to one particular blog that I wrote and thought I would share those words again with you:
There is an old phrase “Lightning never strikes the same place twice”. While I would like to find comfort in that old myth unfortunately life is showing us that the statement is not an accurate one.
As I looked at articles talking about lightning strikes, one of them said that if you want to see lightning strike the same place twice go look at a nearby tall tower during a storm. Lightning is drawn to tall things and will often strike the towers repeatedly. As I read that statement I couldn’t help but see such spiritual significance.
When lightning struck our family in 2013 with Malachi it strengthened our faith more than I ever thought possible. Malachi’s life has taught us the meaning of reliance on God, as our human hands can only do so much. It was AND IS a struggle, but through it all we have tried to stand tall. So it is surprising that lightning has found us again? Should I be mourning the fact that the devil sees the Carroll family as a threat?
Jake and I have been talking over the last few weeks about the term “righteousness”. So many sets of parents in the Bible have been given that adjective, and we talked about how we hoped that God would be able to use that word for us when we meet Him. Now hear me when I say that righteousness isn’t something that we work to “earn”, but it is a heart condition you develop when you live a life of dependence on God and follow His leading.
As I drove down the road this morning I started thinking about the verse “O death where is your sting?” Think about that phrase. Does your life reflect the truth in this verse? Are we living in such a way that death would not sting, because the impact we had on this earth was so great? As I looked up that verse I continued reading the chapter and got mesmerized by this one:
1 Corinthians 15:58 “Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.”
This is one of those weeks that I am feeling the effects of trying to be that tall tower. I feel the effects of those lightning strikes as the memory of them shakes my soul. I find myself cringing, bracing for the next moment of impact as the devil continues to pursue the loyalties of my family.
Just like he went after Christ in the wilderness, the devil pursues us in our moments of weakness. I am not at all surprised that this week has been such a challenging one seeing as it is leading up to a big surgery and also the anniversary of a scary night. All day long I have been reciting those words in my head “Let nothing move you”.
When the devil tempted Jesus in the desert Christ combated it with scripture. This week I am praying that the Holy Spirit continues to place the words of God on my mind that I need to get through each difficult moment that this week may bring.
Please pray for my strength in doing this. Admittedly, I am very worn down this week. We have been in a cycle of pain and sickness for a month now and it is hard on my mommy heart to see them suffer. This week will be no exception as I have to hand off Malachi again.
Please also pray for safety in traveling and that God props open my eyeballs as I make the drive there and back on very little sleep.
Pray against all infections post op for Malachi and that we are able to control his pain levels well. Also pray that this round of antibiotics puts Levi back on the mend quickly, and that he is able to stop vomiting so frequently.
Thank you for being so dedicated to checking in on my family. It is humbling that you take time to read my ramblings each week and pray for my family.
One final note…God and his special and sneaky ways…
I have been having a difficult time lately with feeling very alone on this journey. Jake has always been one that I feel like “gets it” but this week the weight of their care has been squarely on my shoulders. On Saturday morning we got a package on the front porch that was hand addressed to me. I quizzically looked at the large box, confused as I didn’t recognize the return address or name.
When I opened the box I found a carefully thought out and uplifting box of goodies from a church in Ohio. Inside were kind messages and notes of encouragement, gift certificates for dinners out, lotions, and so much more. It sounds worldly to find so much comfort in a box of material things but the gesture meant more to me than they will ever realize.
There are so many of you that reach out to us in such special ways. Thank you all for taking time to uplift a tired momma’s heart and remind me that I am not alone in this journey- that I, in fact, have a host of prayer warriors that have volunteered to travel this hard road with us.