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?

Much love,

Leah

 

 

 

 

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.

God bless,

Leah

 

I feel like I left you on a cliff hanger last week as Malachi was struggling settling back to normal. Monday was another rough day for him so I broke down and scheduled another visit to the doctor. With his random fevers we were very suspicious of pneumonia. I made the appointment for Monday afternoon when Jake would be able to leave during his planning and watch Levi…the last thing we want to do is expose him to germs unnecessarily.

Malachi’s CBC (complete blood count) came back very average and normal but the doctor did think that she could hear some crackling in his left lung so we packed up and headed out to get a chest x-ray. The radiologist reported that one lung looked a little hazy but without the bad white blood cell count to verify an infection we didn’t proceed with any treatment. I felt better knowing that things weren’t in emergency mode, so I am glad we went.

Tuesday morning I packed up the crew bright and early and headed to the hospital for Malachi’s follow up appointment with the surgeon. I told Malachi on the way there that he was going to have to let the doctor mess with his tummy a bit and he kept signing “no”. So I did what every good mom does…I bribed him with a trip to the zoo. We had another appointment at 2:30 across town so we had some time to kill.

After he knew there would be an adventure after his tone quickly changed. After the hard few weeks he has been through I thought I needed to do something to lift his spirits and when November gives you a 70 degree day you might as well take advantage of it!

Malachi was so brave and stayed very still while the surgeon took out his stitches. All of the incisions have healed up well and while I hate the tube with a passion, I am glad we are over the healing hurdle of that first week. He is still very sensitive and cries a whole lot more than normal but it gets better each day.

The appointment went relatively quickly. The hardest part has been waiting room conversations lately as it is testing my ability to offer grace (not proud of that struggle). There are a lot of people in our world that don’t know the polite way to ask about the boys. I get nice comments like  “Your boys are beautiful!” and then I get these:

“So do they both have the same thing?”

“Does he bite (referring to Malachi)?” Hmmmm.

Anyway…

Off to the zoo we went, and as we checked in with the front desk they handed me a schedule of the day’s events. It was 11:20 and there happened to be a snake meet and greet at 11:30. Malachi has been OBSESSED with snakes (and dinosaurs) lately. He has several toy ones that he likes to hold and play with so when I saw that schedule I knew we had to go!

Thankfully we were the only ones at the meet and greet so Malachi got 15 uninterrupted minutes with a 12 foot python. I showed him where the snake was and when his hand touched his back that sweet Malachi smile lit up his face with such joy. I moved my hand away and told Malachi that he could still pet him if he wanted and he independently reached out and pet the snake for several minutes.

It was so wonderful to see that smile again.

We left the snake exhibit and as we walked by the giant lizard it ran over to the glass and began banging his head on the window at Malachi, who started giggling uncontrollably at the “dinosaur lizard”.

Malachi is still legally blind, but in some low lights he can catch movement and shadows with his eyes. The day was very overcast and it made my heart happy to see him searching for the animals with his eyes. And thank you dinosaur lizard for getting close enough for Malachi to enjoy your company. Even though you were a little freaky.

We went from there to the monkeys, who also ran over to the glass to see the boys. I don’t quite know what the draw is but if you ever want to get up close with the animals just join us for a day at the zoo- they always come running!

Levi was not amused in the slightest. And desperately needed a nap. 

And it wouldn’t be a zoo trip without a stop by Malachi’s favorite big cats, the jaguars. That is where I took this video, which has had me laughing all week long. This was the perfect summary for our day at the zoo:

The trip worked wonders for our sweet Malachi and he was close to being back to himself by the time we left. I think he just needed some adventure to focus on.

We tackled physical therapy and feeding therapy for both boys, and even horse therapy this week. With Malachi’s hip and foot surgery coming up next week I wanted him to have one final session with his horse Chica! When I asked him if he wanted to ride his horse he signed “YES” very adamantly and we watched his cues closely for what he could handle.

The week started to pick up momentum towards being a good one. Then Friday rolled around and we had the first sneeze…the warning sign for something brewing. I cringed and waited and sure enough Levi came down with a nasty cold. The rest of us were fine but as you know, it is hard to isolate one kid while being a caretaker to another. By Saturday morning Levi was much much worse and Malachi started with his.

Our weekend has been a re-run of last weekend’s “Should I stay or should I go” game as we make pros/cons list for a dreaded trip to the emergency room. Malachi is handling this sickness decently but Levi is down for the count. He has been running some high fevers, but is still SATing well with his oxygen. I cranked him up to 1 liter and he is still in a safe place but sounds pretty rough. They both have a cough that would send you running. Levi is also throwing up about 12 times a day.

And I am thankful for tile floors and a washing machine.

I am confident that if I take Levi in like this we will be admitted and possibly put back on the ventilator for his work of breathing. But his baseline work of breathing is what we go by and honestly it isn’t that much worse. I promise you all, if we even get slightly freaked out I will make the trip. Just trying to hold off until tomorrow when I could possibly get him in for a CBC and an x-ray like big brother.

The doctors in Cincinnati have told us numerous times that when Levi gets a bad respiratory infection to expect an ICU stay and for him to be put on the vent. We are just praying his body continues to fight this nonsense!

So let’s talk about the next two weeks. And let’s pretend that everyone is normal and healthy as we go into it.

Tuesday night I have booked a hotel room just outside of Nashville in preparation for our big appointment day Wednesday at Vanderbilt. It will be just the boys and I, and I just felt that with my lack of sleep, a 4:30am drive to Vandy (three hours one way) followed by a long day of appointments then the return drive home was not a good idea. Yes, a hotel stay with these two is a brutal thing but it seems to be the only safe option.

We are trying to save Jake’s vacation days for emergencies as we tend to have a whole lot of those in our life.

If one or both of the boys are still sick we will be re-configuring the plan but we truthfully really need this to work. Please pray with me that their bodies are completely healed by Wednesday morning for Malachi’s pre-op appointments. No pneumonia brewing…just immune systems doing their jobs well!

Malachi will meet with the orthopedic surgeon, the anesthesiologist, and get a CT scan done. The appointments begin at 8 and last until around 3. I will go back alone with Malachi the following Tuesday (November 20) for his surgery.

In addition to this full, busy day on Wednesday, Levi sees the eye doctor on Thursday and gets his first synagis shot on Friday. Synagis is a medication that helps lessen the effects of RSV should he contract it. It is extremely expensive and reserved for only immune supressed kids or children with lung issues. We are very thankful that he qualifies for the injections and will get them once a month through RSV season. Insurance is completely covering the bill, which is a miracle in itself!

Each of these appointments are about an hour away so we will be logging some road miles this week. I have went ahead and canceled all of the therapies we have scheduled for Monday and Tuesday so we can just focus on getting better.

We are all very exhausted. We were coming off a rough week anyway with surgery, and then got hit with two sick medically fragile kids. I won’t be able to spend too much time with the devotional thought this evening, but definitely feel like God has laid some things on my heart to share with you.

Way back in July I purchased tickets to take some of the girls in my youth group and their mothers to see Sadie Robertson in Chattanooga. If you don’t know who she is, she is the daughter of one of the men from Duck Dynasty (think long ZZ Top beards). I was running on zero sleep and truthfully dreading going but needed to drive the bus and get my crew of 22 there. Jake geared up for war on the home front and I reluctantly left.

Sadie is a wonderful, God anointed speaker and I highly encourage you to look her up and hear some of the things she has to say. The message was geared perfectly for my teenage girls and being in the presence of God felt refreshing. As I looked over the rows of my youth group, my fellow sisters in Christ, I realized something….

I don’t pray for others nearly as often as I should. Most of my prayers center around my world, my kids, my needs. I don’t often take time to pray for others. But the Bible tells us the Holy Spirit prays on our behalf and I am confident that prayers over the things that burden me are making it to the ears of God without me even speaking them. So why do I not take the snippets of time I do get to focus on formulating a prayer to lift up someone else?

I spent most of the evening praying over these teenage girls that God has placed in my life. As I looked at each one of them I thought to myself about their futures and the trials that each of them might have.

The devil shows no discrimination. Your wealth, your status, your list of good deeds…nothing exempts you from attacks from the devil. Nothing takes you off of his radar. In fact, when you are a child of God it puts a bulls eye on your back as he is jealous of the love you have for God.

But in the same way that the devil shows no discrimination, neither does God’s love. There is nothing you can do that makes you undeserving or unworthy. Nothing takes you off His radar. He seeks after the flawed, the imperfect, the burdened, the ones with a past. He seeks after you with a love and a compassion that nothing else in this world can offer.

Lately I have been so focused on the compassion of Christ. Oh how I wish I had eyes to see the world as He did. I wish my eyes could be drawn to the situations that need a burst of compassion, and give me the ability to meet those needs.

God had a word for me this week too. I had to look it up after He laid it on my heart…

Colossians 3:23-24  Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

I thought about this verse and tried to pinpoint which areas/roles of my life are done as if I am serving Christ himself. There are many times when I care for the boys that I am filled with an overwhelming love, knowing that I am serving them as Christ would. But there are just as many times I complain and trudge through my day.

As I sat at the event on Saturday I started to process what a day would be like if I treated everyone as if they were as valuable and as worthy as Christ himself. What a impact that type of living would have on our world. And what an imprint a life like that would leave on hearts.

I have personally challenged myself this week as I go through an emotionally challenging one to serve others as though I am serving Christ…at the pharmacy, at the drive through window, with my youth group, with my husband, with the doctors I will encounter. It will not be an easy challenge.

But if we want to be a light to our world we have to be willing to tackle big challenges.

Please lift up the Carroll crew in your prayers this week. In addition to some wild schedules, it is also Levi’s birthday week (on Wednesday). I am purposefully not spending much time on that one in this blog because I don’t think I can handle the emotions that reminiscing will bring tonight. But next week…oh goodness.

Thank you for checking in on my sweet boys and thank you for praying for a complete and total healing on their bodies. That Levi’s vocal cords would awaken and Malachi’s brain would be restored!

Much love,

Leah

 

Oh my what an exhausting week we have had. Be prepared for lots of information and a ridiculous amount of pictures. When we get locked in the house post op I find lots of opportunities for photos!

Here is a snapshot of the number of syringes we are going through in ONE day between both of the boys medications right now:

Surgery Day: I checked Malachi in for his surgery at lunchtime on Monday. I told Jake that my goal was to make it the whole hospitalization without shedding tears, and I came soooo close.

The time came for the dreaded hand off- the moment where I hand my sweet baby to a stranger, knowing they are about to take him to a room of pain. God blessed us with a special treat- one of Malachi’s NICU nurses is now working in the operating room and was able to take him back and be with him for most of the surgery. She messaged me later and told me he was a ham back there making all the nurses laugh.

I went back alone to my holding cell. If you have been with us for awhile, you will understand my joy about having a room with a door! And I waited. The phone rang several times with updates, but the second time was the disappointing news that they attempted the laparoscopic route and it did not work. That meant they had to start over and do the surgery through an open incision. The surgeon came in after the procedure and seemed as disappointed as I was that he wasn’t able to do the less invasive route. I said “Well, I am not surprised as we seem to be a worst case scenario type family.” And the surgeon replied “That’s exactly what I told my resident…if something can go wrong, it will with this kid.” Even the surgeons acknowledge our knack for complications.

After a relatively easy recovery room experience thanks to pain meds we settled into a room. They took off the dressings to take a look at the surgery sites and my stomach dropped. Not only were there two small incisions from the laparoscopic attempt, but there was another 4 inch incision right in the middle on his stomach. And then there was the g-tube….Levi has what they call a mickey button. It is a small button that sits on his stomach that is about the size of a penny. You hook extension tubes to it to put his food in and when it is not in use you can unhook the extensions, close the lid, and no one would even know it was there! Very low profile and relatively flush on his skin so you can’t see it through his clothing.

They were unable to put that style of tube in Malachi and instead put in a HUGE mechanism. The button is 3 inches in diameter with a tube sticking out of the middle of it that stays on there 100% of the time that goes down to his mid thigh. My heart started to break for Malachi as we always try so hard to preserve his normal. We genuinely hated doing this surgery but knew it needed to happen. But this device was never what we had in mind. This gives people something to say “Ewww” over as they see a clear tube hanging out oh his stomach with stomach juices inside of it.

Yep- I cried over that stupid tube.

I would show you pictures, but it is not a pretty surgery site right now and it had to be sewn onto his stomach. Thankfully we are told we can switch this tube out for a mickey one in 6 weeks.

I can handle a whole lot more than I ever realized but something that has yet to get easier for me to handle is wounds. Wound care is my weakness, and I can’t tell you how many times I have dry heaved in the last week trying to keep everything clean and healthy looking. Stomach juices are a close second, which doesn’t bode well for a g-tube (x2) momma.

We had really hoped that this recovery would be an easy and simple one but unfortunately it is not going well at all. Malachi is in a lot of pain. We were discharged on Tuesday afternoon and kept him heavily medicated for several days. On Thursday we noticed his breathing changed a bit and wondered if the pain medications were slowing his rate. To check our theory we weaned him to basic Tylenol and Motrin which did help his breathing rate but then Malachi started running moderate fevers. The pattern has been the same since Thursday: Malachi starts running a fever, we medicate him and it breaks after a few hours, 24 hours later it returns.

We have been communicating with the surgeon as well as the pediatrician and unfortunately since it is the weekend there isn’t much we can do other than take him to the emergency room. I asked the pediatrician if they would call in orders for a chest x-ray to check for pneumonia and a CBC to check for infection but they said they were not comfortable doing that without laying eyes on him, which they can’t do until normal operating hours tomorrow.

This is where the parent struggle comes in. His immune system is so compromised. Yes, we could take him to the ER but I can almost guarantee that Malachi will contract something worse in there, and likely bring it home to Levi. We are told that when Levi gets any airway sickness to expect an ICU stay on the ventilator. Taking him to the ER would endanger both boys so we are trying our hardest to get through the weekend without going that route.

Obviously Malachi’s safety and health comes first so we have been checking his oxygen saturations on Levi’s pulse oximeter, breathing rates, temperatures, and charting it all. We still think he is in a safe range, but definitely want to get him in tomorrow to check things out. Post op fevers are pretty common, but we feel like he has something respiratory going on- it could be an upper respiratory infection he picked up in the hospital but it could also be post op pneumonia (he gets intubated during surgeries) which needs to be treated. Please pray with us that we can avoid a late night ER trip tonight and that we can get answers and treatment in the morning. And pray for Malachi’s comfort- he has just been so miserable this week.

I was able to get a few smiles out of him this weekend during our fever free times.

During our hospital stay we were able to see a lot of friends- I actually started laughing this week as I reminisced over all the people that stopped by while we were there…former nurses, college friends that became nurses, a local friend with her own warrior in the ICU…

One of our surprise visitors was Malachi’s neurologist. He saw that we were inpatient and came to give us the good news that they had officially been cleared to start prescribing Epidiolex, the first FDA approved cannabis-based drug. It has been doing wonders for children with intractable (uncontrolled) epilepsy like Malachi, so this was amazing news. Malachi will be one of the first patients to try the drug at our hospital! I have been dealing with the paperwork and phone calls and it looks like we will be able to start it next week. We have tried CBD oil in the past and it has definitely made a difference in his tone, seizures, and sleep habits.

We were able to deliver our “Blessing Box” to the NICU on Monday before surgery! In the end we collected enough donations to donate 144 cards, each handwritten and filled with a $20 Target gift card and a $5 Starbucks gift card. There are instructions on the top of the box to give a card to a long term NICU mom that really needs some encouragement.

I know I have mentioned this before, but God told me that each one needed to be handwritten. I was able to write nearly 50 of them but it took me 1 hour to write 8 cards….at that rate I knew I would not be able to finish before New Years. Thankfully several friends willingly took stacks of the cards and wrote the message for me. It was a good reminder for me in allowing others to help carry our burdens and help where they are able.

I prayed over each card the night before I delivered them to the NICU- it was a good distraction from the day looming ahead of us. I prayed that God’s purposes would be fulfilled with each card, knowing that this project was His doing and not mine. There is something so exciting about obeying God, even when you don’t quite see the whole picture.

There are reasons for everything God asks us to do. I don’t know why these needed to be handwritten, and I may not ever know but remember that the details matter to God. Sometimes His plan is bigger than the sacrifice of time He requests from us. And what we see as menial tasks are just catalysts for something big He is about to do.

And just like the Bible story of the 5 loaves and 2 fish, never underestimate God’s ability to multiply. I am the boy in that story, with a tiny gift that was offered. Jesus takes our tiny gifts and creates miracles in the lives of others. What tiny gift are you able to bring to God to become his instruments?

When things are done through a heart like His, a heart of true compassion, He will supply your every need.

On Wednesday I had a friend request on my Facebook account and saw that the woman in the profile picture was holding a preemie. I clicked on her profile and she had posted this:

I was amazed that somehow she had found me, as I had not given enough details for her to be able to track me down. To keep them personal, I simply put that I was mom of Malachi (a 24 weeker; 112 day NICU stay) and Levi (34 weeker; 131 day NICU stay). But a mutual friend had seen her post and knew about the project we were doing so she tagged me in it. It blessed my heart to see that God was already using these cards to lift up spirits and point these discouraged mothers towards Christ.

It is so much fun to watch God work.

Let’s talk about Levi. I don’t know if his antibiotic has fueled his wild side but he has been a bundle of energy.

This is his new favorite game in his car seat. He rocks himself so hard that it gets stuck propped backwards. But don’t stress, he can get himself un-propped. Y’all, he is WILD.

He also had his first tooth finally break through this week! Oddly enough he is getting his top front teeth first. Pretty much everything he gets a hold of goes into his mouth these days.

Levi sure does love his daddy, but this week we hit a HUGE milestone and he started calling for MAMA! I left for the hospital with Malachi and sure enough Levi started calling out for me while I was gone. This is a very big deal for two big reasons: 1) I have never had a child call for me  2) This is the boy who we were told might not have a voice  I was able to get it on film to share with you all…

This week has been a very messy week as both boys have discovered their feeding tubes have lids that pop open. Looooots of laundry and lots of baths. The day we came home from the hospital I went into the kitchen to put dishes in the dishwasher and when I turned around Malachi had a mischievous grin, which was a surprise since he wasn’t feeling well. I walked over the find he had a death grip on that stupid extension tube and had popped the lid off- he was now sitting in the 8 ounces of food we had just put into his belly. YUCKKKKK.

And lovely little Levi has done that very same thing tonight 3 different times in the last two hours. Messy, messy boys.

On Friday I was giving Levi a much needed bath and had him stripped down on the bath mat. He looked very seriously at me and whispered “Mama” slow and creepy like and as I quizzically looked back at him I felt the warm sensation of his pee stream hitting my leg. Lovely. He was highly amused and I couldn’t help but laugh.

Alright, so let me be real and raw for a few minutes. It is weeks like these that I realize how fragile I am. In my head I am tough as nails, but my heart knows that is just something I tell myself to keep it from breaking. The inside of me is a very weak mother who carries scars from seeing her boys struggle over and over again.

On Thursday I had to consciously avoid looking at the chair I sat in when the pulmonologist told me Levi’s vocal cords were paralyzed and he would need a trach.

That parking space where I sat in the car and sobbed uncontrollably one night when we almost lost Malachi.

I avoided eye contact with the sleep study tech as we passed each other in the hallway, but seeing her brought a wave of nauseousness as I remembered all the discomfort Levi was in that night and how we were about to have to do another one in December.

I had to walk on the left side of the hallway, remembering the hundreds of times Jake and I walked to the right in that hallway during Malachi’s nearly 4 month NICU stay.

I tensed as they looked up what room we would be sent to, knowing that the ICU is on the 4th floor- we know that floor so well. But also knowing we have spent weeks on the 3rd floor as well, and praying that we wouldn’t get one of those rooms where the memories would be able to creep in.

When I went into the bathroom while Malachi was in surgery I caught a glimpse of myself in the mirror and flashed back to a tear stained Leah face that I had seen in that same mirror dozens of times before.

There are triggers everywhere. They are literally unavoidable in that place. And while I used to be able to mentally push past them I am losing that ability. This was surgery #34. Stress is starting to impact me physically with full body stress rashes, hives, vomiting, and the inability to eat. I feel like I have been at war.

Even being home from the hospital this week I have had a difficult time, getting nauseous each time Malachi’s fever comes back, knowing that I am possibly going to have to take him back to that place. These feelings have nothing to do with my discomfort, but rather the pain I feel for them.

In my weakness, mentally I have been allowing thoughts in that don’t belong. This week I was flipping through pictures on my phone and I paused and thought “What if this is the last picture I will ever take of Malachi?” In my heart I know these thoughts are not healthy, but I haven’t been able to succeed at pushing them out of my mind.

If you haven’t already picked up on this, I am a control freak. And not being able to control the outcome of anything medical for my children is very devastating for me.

When I start to feel like I am drowning in these thoughts the warning lights quickly activate and I know I need to stop them quickly. I always try to refocus by thinking about our family verse, Philippians 4:8:

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

I felt a breakdown coming on while I was in the room waiting to hear from the surgeon about Malachi. As I tried to refocus my thoughts, something popped into my head…

We chose this life. Why should I mourn over something that I chose?

We could have avoided all of this stress, this pain, this heartbreak. When Malachi was just 3 days old we were given the chance to discontinue his lifesaving care. But we both so firmly felt that we were to choose life for our son, and that his time on earth was to be decided by God and not us. We asked them to save our son that day. They presented us with the likely outcomes for Malachi with the extent of brain damage he had suffered, and most of those predictions have rung true.

We could have tried again for that easy life we dreamed of…that problem free baby. We could have made the decision to give Malachi his heavenly body and spared him this challenging life. But we felt so strongly in our hearts that God had work for him to do here on earth first…regardless of how “imperfect” he might be. God has a gift at working through the things that we see as broken.

Every day of Malachi’s life, even the hardest and darkest days, has been a blessing.

If we could go back to that room and have that same conversation again knowing all that we know about Malachi, we would choose this life again and again. Our Malachi is a world shaker. He is a life changer. He is a glimpse of God.

“Blessed are the pure in heart for they shall see God.”

Through Malachi we have been given the privilege of sharing the very reflection of God’s love with the world. The joy of the Lord flows through him. Malachi is loved by God, and is His beautiful creation.

We were given a very special gift this week from someone whom we have never met. She had read about my sadness at never being able to get a really good picture of Malachi as he usually turns his ear to the camera instead of his eyes (he is legally blind but can hear very well). She sketched this beautiful picture that brought tears to my eyes and gave me chills.

We chose this life, and we would choose it again and again and again. Can you imagine a world in which Malachi had not lived?

We choose you again and again, sweet son. You have already impacted the kingdom of God more in your 5 years of living than most get the opportunity to do in a lifetime. You are a vessel for the Lord and what a blessing God has given to us in you.

Please join us in prayer this week for healing and comfort for Malachi’s body. Pray that we are able to find answers and treatments in the least germy environments we can. Pray for wisdom, as that is always a need in our parenting choices with these boys.

Thank you for being a part of our journey,

Leah