Another surgery week down in the books! While we have a few more surgeries pending for Levi in the next few months, this was the last scheduled one for Malachi.
Malachi and mommy loaded up late Monday night and made the drive back to Nashville. We stayed in the magically perfect hotel that we stayed at the week before and settled in for the night. There is such a huge difference when taking care of one Carroll kid versus both. And Malachi seemed to really enjoy the one on one mommy time.
Packing for surgery days is so complicated. There is the optimistic side of me that wants to pack for the one day we are told we will spend in the hospital. But then there is the pessimistic side, the “been there done that” side that knows that there is potential for things to go wrong and for us to get stranded at the hospital for an unknown number of days. I can’t even count the number of times we have gone to the hospital expecting to go home the same day and end up there for 4 night, 10 nights, several weeks. The control freak side of me hates to be so unprepared so I always pack for a worst case scenario and leave it in the car. And I always make sure to shower the morning of, knowing it may be the last time my hair gets washed for a very very long time! Oh traditions of the special needs momma.
We were scheduled to check in to the hospital Tuesday morning at 9:45, but at 6am they called to tell me that the case before Malachi’s had been canceled. They asked how quickly we could get there so we hastily packed up the room and headed toward the hospital. We were quickly registered and taken back to the pre-op area to speak with the surgeons and anesthesiologist.
I have been trying to prepare Malachi for this surgery for several weeks now telling him that he was going to go to sleep and when he woke up he was going to be sad and his legs would hurt. I explained that he would be scared but that mommy would be right there to cuddle him and we would listen to music together. After his last rough recovery I decided to sweeten the deal this go around with a special surprise for him when he woke up. He has been pretty excited about finding out what the surprise would be.
Every time I had this conversation with Malachi about surgery he would smile at me sheepishly so I wasn’t quite sure he was completely understanding what was to come, and during pre-op he was one happy little boy.
The surgeon came by for our last pre-op talk and we discussed some of the big concerns I had. If you haven’t been with us from the beginning, Malachi went through 5 months of serial casting right after we brought him home from the NICU in 2013. Y’all, it was insane. Every Thursday we had to get up at 4am and soak Malachi’s legs in the tub until the casts got soft. Then we would peel them off and take him straight to the hospital for his next set to be put on. For 5 months. Mmmmhmmm. It was a nightmare. I found a slightly questionable way to decrease the tube time with some sheet metal cutters from Lowe’s (don’t worry, not as dangerous as it sounds) but it was a rough beginning for this new momma.
One of the main issues we used to have is that they would put on a set of casts and we would drive an hour home. Then Malachi would cry hysterically and we would find a spot in the cast that was rubbing a hole in his skin so we would have to put him in the car and drive him all the way back to the hospital for them to cut off the ones they had just put on and give him a new set. On Tuesday I asked the surgeon how common this was, explaining that driving him home 4 hours then having to bring him back for sores was going to emotionally and physically bankrupt me. He said that sometimes that happens, then said he was going to try to come up with a way around it.
Malachi has had surgeries (eyes) at Vanderbilt before but they were while he was inpatient while in the Chattanooga NICU so I wasn’t sure what to expect. It was all very similar to Cincinnati with me having to wait in a large waiting area during the procedure. In Chattanooga you wait in a room by yourself, which is so much more conducive to my wavering emotions on surgery days.
They took him back and I was sent out to the waiting area his empty wheelchair in hand…the constant reminder that my son was in surgery and there was nothing I could do to change places with him and take that pain away. I HATE crying…it isn’t a pride thing…it is an energy thing. Expending that much energy and emotion completely depletes my energy. And I just can’t afford to cry and deplete that tank any more than it already is.
But I really really HATE crying in front of other people. As I wheeled that empty chair out to a giant room full of people I knew I was about to lose it so I hopped on the elevator and went to “my corner”. At every hospital I go to I try to find a space off to the side where no one else goes. It is where I sit and park in between appointments, where I go to cry, where I go to take deep breaths and chill with the kids. I bee-lined down the elevator and made it to my corner before the tears came. The feeling of being powerless can be so suffocating and overwhelming as a parent.
I sat in that corner, praying over my Malachi and allowing myself a few minutes of tears. Then I pushed that empty wheelchair back up to the surgery waiting area and waited anxiously for word on Malachi. After two hours I finally got called back to speak with the surgeon.
He explained that after he physically got to see the insides of Malachi’s feet they got a much better picture of what was going on. In addition to several of the joints in his feet being dislocated, he also said there there were several joints and bones that actually never formed. They are literally not there. He was planning to put pins in to help hold the bones, but since they weren’t physically there he was unable to do that.
Our goal for Malachi’s feet is to make them “brace-able and shoe-able”. We just want them straight enough that he can be in braces, so the braces can hep fight the messages his brain is telling his ligaments. He said that if his feet continue to turn outwards the only option we have left is to surgically place a screw between the main bones in the foot. But we are hoping that this surgery helps relieve some of the pain he has in his feet.
The surgeon explained that based on so many missing pieces in his feet, he is relatively confident that Malachi suffered some brain damage in utero. We aren’t quite sure if this happened in the few days after my placenta abrupted but before we knew (I had unknowingly had internal bleeding for several days prior to his birth). Or if this was early on in the pregnancy due to some genetic birth defects. Either way, his rough birth at 24 weeks with 15 minutes of CPR on his 1 pound 12 ounce body was not the cause for his feet issues.
They made 4 incisions total and loosened several ligaments and tightened several others. The surgeon is AMAZING and after thinking about our conversation about my casting fears, he worked with the casting team for a solution. They ended up making a three-sided cast for his feet that we can take off if it is causing him pain (so far so good). The cast is held on with three velcro bands. He even said that we can take it off for 3-4 hours a day if needed to give him a bath. WOW! We were expecting 6 weeks in casts which tend to get very stinky, so this was a wonderful surprise.
He also adjusted our post op plans so we don’t have to go back and the four week mark and then again at the two week. By doing the casts this way we are able to eliminate one of those appointments and only go back at 6 weeks post op.
After speaking with the surgeon I had to go back out to the big waiting room for another hour before they called me back to recovery. I always make sure to voice how much I need to be back there for Malachi’s wake up. “I’ve watched my kids code, watched my kids get intubated, watched them nearly die…get me back the second he gets there please! You don’t know how to communicate or read Malachi.”
He was sleeping soundly when I made it back to see him. After 30 minutes he started to wake up a bit and we listened to music as I promised him. When he was a little more awake he got his special surprise toy, a dinosaur that growls and bites.
Shockingly Malachi didn’t shed a tear the whole day! This was the first time ever that Malachi has not woken up from surgery hysterically crying. They managed his pain SO WELL for him and seeing him so normal and happy was refreshing.
They had given him some numbing medicine that was going to keep him legs from feeling any pain for about 4 hours so my goal was to get him home before the medicine wore off. The drive took a bit longer with holiday traffic but he handled it all very well.
Malachi has been handling recovery so well this week, successfully managing his pain with just a few days of tylenol. He has been crying a lot today but when I ask him what hurts he is telling me his tummy and not saying his feet so I don’t know that it is surgery related. We have almost felt like the surgery relieved a lot of pain for him by the way he is acting.
I did end up having to take him to the hospital the day after surgery for his g-tube site. It started to smell a bit and began growing something called granulation tissue. Basically, the hole is trying to heal itself and grows up tissue. It can be very painful, and in Malachi’s case started to bleed. The only way to combat it is to burn it off with silver nitrate which obviously has to be done by a professional. He has grown some more granulation tissue since then so we might have to make another trip this week.
Oh that tube. Deep breath. He is still crying and signing “no” when I try to send his milk in through it and I am torn between wanting to respect his wishes and needing to get the extra calories in him. We are still feeding him by mouth for every feed with the exception of post-op so we could leave the hospital, and a bit this morning when he was so upset he wouldn’t drink.
As you know, Thanksgiving Day was Thursday and since we weren’t sure how Malachi would be feeling we hesitated making any firm plans. He seemed chipper enough for us to venture out so we went to our favorite local restaurant for Thanksgiving lunch. I had to fight some memories throughout the day as I kept flashing back to last year eating a Thanksgiving meal at the Ronald McDonald House. Don’t get me wrong, we were so blessed to have a place to be that was close to the hospital but spending holidays away from home and attached with so much sadness is difficult.
That afternoon we spent some time with family close by, and this weekend my brother drove up from Atlanta for a visit. Malachi and Levi have been able to see 8 cousins in the last four days and seeing them all interact has been so fun. We let Malachi sit at the kids table and he felt like big stuff.
One of Malachi’s 6 year old cousins told us in his very matter-of-fact voice that “Malachi goes up to heaven and spends time with God, then comes back down to earth.” I figured this was something that he might have heard someone else say but he came up with that all on his own.
Now that Levi is on antibiotics he is finally getting back into a sleep routine, praise the Lord! Y’all, I was at my breaking point!! He is still getting up a handful of times a night to vomit, but is going back to sleep quickly. Surely he is on the tail end of this cold that he just can’t shake. He has lost some significant weight from all of the vomiting these last few weeks but hopefully we can start packing it on again.
Levi loved seeing family this weekend and really enjoyed being the center of attention. I took a video for you:
And the boys are officially in a size range where I can buy them matching clothes. Dinosaur church shirts (Malachi obviously picked these out) for the win today!
Jake goes back to work in the morning and life goes back into its routine for me and the boys. We have 7 scheduled appointments in just 3 days this week, and possibly more as we deal with Malachi’s tube issues.
I have had a lot of time to think this week while driving and I keep going to a quote from Corrie Ten Boom: “This is what the past is for! Every experience God gives us, every person He puts in our lives is the perfect preparation for the future that only He can see.”
Those words have swirled around in my mind all week as I have thought about the route God has taken my life. My life has never been an “easy” one. And in each season, I have been convinced that I have more on my plate than I can handle.
But when I look back at each of these seasons in life it is so glaringly obvious that God was preparing me for life with these precious, special boys.
One of the things I had to learn very early on in life was the value of a good work ethic. While I had all my basic needs met, I had to work hard at a young age to be able to afford anything above the basic necessities. In high school I spent my summers working 40 hours a week at the local pool. During the school year I would get up before school started and open up the senior center pool at 5:30 in the morning, working a few hours before I had to be at school at 8. Then go back after school to log in some more hours.
Then it was time for college. Against the opinions of some very important people in my life, I made the decision to go to Lee University, a Christian college in Tennessee. I had settled on a different secular college, but as God does He tugged at my heart and even then I knew the importance of obeying His calling.
But with a Christian college came a hefty bill. I knew going into it that college was going to be my responsibility financially, but I have always firmly believed that if God called me to do something then He would be sure to provide a way to do it.
God provided me with an on-campus job a few days before classes began. I was determined to graduate in four years because I really couldn’t afford to do it any other way. And with good grades came good financial aid so I had to make being a student priority number one. I literally laugh when I look back on some of the stressful times during those four years.
At one point I was working 3 jobs which totaled nearly 60 hours a week; Information Services and Technology as an administrative assistant Monday through Friday, Campus safety dispatcher on Saturdays and Sundays, and the director of a special needs church program on Wednesdays and Sundays.
In addition to those three jobs I had a 21 hour class load- something I had to get special permission to be able to do. Looking back, that is insane. Most of my friends were taking 13 to 15 hours a semester.
I was also actively involved in two service clubs, which sucked any extra time in my calendar. But those memories mean so much to me. They were my outlet.
I really wanted to be a writer. A journalist, to be exact. But in my world I needed to do things that made financial sense. I knew that I could write without a college degree and if I was going to spend thousands of dollars on an education I needed to do something that required a degree. So I settled on being a special education teacher (hello God haha). The special education certification that I took was for K-12 and required all the basic classes plus the next level of classes in EVERY subject matter so you would be prepared to teach all of them.
Mathematics has always been a struggle for me. I remember taking the step up from basic math class and he explained that he only gave 4 tests a semester. Our grade was to be based on those 4 tests alone. I studied for hours for that first test and made a whopping 52. I got nauseous when I saw that grade at the top of the paper, knowing that my financial aid hinged on my GPA.
I had no other choice but to master that math class. I was already starting off with a failing grade and to bring it up to an A would require me to ace the remaining tests. I remember sitting that day at lunch and thinking that this would be impossible, and trying to think of a plan B.
But there was no Plan B.
I spent every extra hour I had conquering that stinking math class. I did EVERY single problem in the book in preparation for tests. I took notes, writing every word that came out of that man’s mouth. It was a miserable semester. But at the end of the semester I walked away with a hard earned A in the class.
And at the end of four years I walked across the stage at graduation with a 3.97 GPA that was earned with sheer determination. School was never easy for me. I am not exceptionally intelligent. But even then God was showing me that He doesn’t call the equipped but rather equips the called.
Interesting side note- after graduating with my degree in special education the federal government came out with an incentive program for special education teachers who worked in low income areas. If you worked for 5 consecutive years the federal government would forgive $17,500 of your student loans. While I am sure that this had something to do with a quality teacher shortage, I am also choosing to see that God had something to do with this! Malachi’s birth happened at the tail end of year five, allowing Jake and I to enter this new phase of life debt free. Thank you God for working in ways I cannot see.
When I look back to those college days, getting 5-6 hours of sleep a night in between all of the studying and jobs I see the hand of God. I remember thinking that *THIS* was the hardest my life would ever be. “If I could just get through these four years.”
And when I look back at those moments now I laugh at how insignificant they are compared to my trials today. But had I not had those difficult years early on, I am confident that this life would have broken me down much more.
God allowed me to become acquainted to suffering, self-denial for a greater goal, and the art of taking life one day at a time. He allowed the waters to rise right under my lips multiple times, and when those feelings come I am no longer panicky.
God prepared me for a life with no plan B. And while I don’t always feel prepared for this unique life, I am so thankful for those trials.
Malachi’s birth wasn’t my first faith tester. God knew exactly what was to come, and with His compassionate heart He allowed me to suffer more trials. And put up with me complaining through each of them.
Thank you God for those trials. And thank you for the things you are helping me overcome now. Who knows what each of these are preparing me for in the future.
There are no coincidences with God. When you start to look at the bad things in your life as part of a bigger plan you get a fresh set of eyes with which to see your world. As much as Satan tries to convince you otherwise, God is good all the time. His plans are FOR US and not against us.
We are simply called to live a life of trust. Sometimes I score a 52 on that test too haha.
My prayer this week is that God allows me to see beauty of “the past.” I pray that He continues to give me snapshots of me in my weakest moments and remind me “I was there, Leah. I saw you. I am El Roi, the God who sees and I have always held you in my hand.”
Suffering brings a strength that nothing else can bring. What is God preparing you for?