We have crammed an unbelievable amount into the last seven days. To keep me on track I will chunk the week into the big events!

Let’s start with the beginning of the week….

NICU Service Project- Tuesday

Early on Tuesday morning we loaded down several cars and hauled $7,500 worth of presents down to the NICU. A whole crew of people met me in the parking garage and helped bring the bags and boxes up to the 5th floor and we started to organize the tables.

We categorized everything by price range and quantities and the moms were able to choose at least one thing from each of the 9 sections, filling a giant Target bag. Another organization had donated $25 Chick-Fil-a gift cards for each of the families so we were able to distribute those too. On Friday the hospital had given a voucher to each of the NICU families for them to trade for a shopping trip!

In my head I had thought through how everything would go, and the day far exceeded my expectations. I knew the moms would be grateful and enjoy the shopping part but they were so much more emotional than I expected. You could see that they were genuinely touched by the gesture, and many of them had been anxiously looking forward to the day. Seeing their excitement and joy as they picked each item was so beautiful. Several of them wanted to know how they could get involved to do this again for other families next year. I can’t say with certainty that we will do the project again, as we are often in the hospital for the holidays ourselves but if God leads us that direction we will go for it again!

In addition to the hundreds of people who donated, and the dozen people that helped haul stuff into the hospital, I had 5 women stay at the tables and help me restock and distribute. One of them is a labor and delivery nurse that used to be in my youth group, one is a early intervention gal that worked with Malachi when he was young, and the other three were NICU moms. We each had signs with our babies photos and information to help strike up some conversations. If the moms were having a hard time choosing an item we were able to offer great advice based on the variety of NICU babies/diagnoses represented.

A HUGE shout out to all of you who helped make this happen. Again and again we keep witnessing God work and explode an idea far beyond anything I ever imagined. I read every single gift receipt and note that came with the packages and seeing the diversity in all of the generous givers brought me more joy than I can communicate. You all are amazing, and I hope you share in the same joy I did at seeing some of these photos.

Jake, Levi, and Malachi joined us and we were able to introduce them to several of the parents and answer their questions. One of the parents had a baby in surgery to get a g-tube and we were able to show her Levi’s and talk through the good, bad, and ugly.

Levi also got to see one of his favorite NICU nurses, Valerie. She kept me sane for those few weeks we were in Chattanooga prior to the transport to Cincinnati.

I had talked to the boys at home all week about how we were collecting toys for the babies in the hospital who can’t be with their mom and dad all the time. I talked to each of them about their months in the hospital and the toys that they loved to play with while they were there. Malachi clung to every word and was so excited that the babies were going to get some of those same toys. He seemed to truly understand what we were doing. Levi’s reaction was “I pooped”, our favorite phrase of the week.

I also included a card in each of the bags that talked to the moms about God’s love for them. On the back I included some of the information about Malachi and Levi and left contact information if they wanted to talk about anything, from spiritual things to medical jargon. I have had a few of the moms friend me on Facebook and I am hoping to make some God ordained connections with many of them, much like He has done with the moms that helped me at the tables that morning.

We used a portion of the donated money to hire a Santa to go from bed to bed in the unit for pictures. I had worked it all out with the hospital for us to provide the funds and they would figure out the rest, since the Santa had to be hospital trained. But the woman that was scheduled to walk Santa around and take the photos was unable to do so, so they asked me to cover it about an hour before his appearance.

To be completely honest, my initial reaction was hesitancy. I was anxious about being back in the unit…if my memories/PTSD were attacking me OUTSIDE of the unit, I couldn’t imagine what being INSIDE the unit would spark. But I also really wanted those photo keepsakes for each of the parents, so I agreed and pep talked myself for the next two hours leading up to it.

When I walked through those doors I had that wave of nausea hit and I took a deep breath and looked down at the ground while I walked. What actually snapped me out of it was that I passed Levi’s pulmonologist, and I figured he would be mad at me for leaving the sleep study early so I went into hide and seek mode trying to avoid his line of vision.

There are seven different pods in the unit and the census of babies was around 60. We got photos of him with each baby; if the parents were present we used their phones for the photos and if they weren’t we used the NICU camera so they could print it out for them.

The more we walked around the less anxious I became, and I truthfully really enjoyed being able to take the photos and try to get the best picture possible for the moms. I remember how important those keepsakes are. It was also so fun to see the nurses again and see their confused faces as to why I was back and baby-less.

But the most rewarding part for me was to see firsthand how excited the parents were to open their new gifts. Many of them had already dressed the babies in their new outfits/hats/hairbows, wrapped them in their new blankets, and were playing with their new toys. Seeing those tiny babies in clothes made specifically for their size (2-4lbs) was so sweet- they didn’t even make those clothes when Malachi was that small.

Side note- I did get spotted by the pulmonologist and we briefly talked about the sleep study. He didn’t seem to angry, so that is a plus. We will have an appointment in a few weeks and talk in more detail.

Christmas Day- Wednesday

Jake and I have been trying hard to figure out what we want the holidays to look like for our family. Our perspectives are forever changed by the blessing of our two miracle boys and we don’t know how many years we will get to celebrate each holiday with Malachi…when you think about that fact you tend to get a little more serious about teaching the meaning behind the holiday.

We also recognize the need to do things just for the fun of it too- so I sent Jake out in the backyard to cut down a 5-6 foot Christmas tree.

As you can see it required a trim to hit the goal height haha. And we figured out after the fact that the branches were too thin to hold ornaments and there was a nice layer of thorns on each of the branches. Christmas tree fail! Malachi loves it and Levi (and I) have a healthy fear of it.

We want Christmas to be primarily about blessing others and making the holiday less about “self”. I want my boys to understand the heart of Christ and to learn the emotion of sacrificial giving at an early age…not just giving others your junk or the things you don’t like anymore. So the day before Christmas Eve we packed up a giant box of new and gently used quality toys and dropped them by a trailer in our town for a family that had called the church office and asked for help for Christmas. While I packed the box we talked about each toy and how much we loved the toy, but it would make another little boy and girl smile so big. Malachi loved packing the box and talking about each toy. Levi…well we will keep working with him on that one haha.

For their Christmas morning we stuck with our new tradition of 4 gifts each: something you want, something you need, something you borrow, and something you read.

Levi’s favorite new item was a broom and mop set; he loves carrying around my broom and dustpan so finding one that was just his size was perfect. It also came with a duster, which apparently is meant for Malachi’s head.

Malachi got two new switch adapted items- an automatic card shuffler (the something you need) so that he could participate in our card games with a special job all of his own, and a penguin slide toy (the something you want). He has had this toy before but it broke so he was thrilled to open a new one. I have some great videos of Malachi demonstrating his new gear to you but it is storming here in the mountains and the internet isn’t cooperating.

And Jake got a tetanus shot. Yep- stepped on a nail in the basement on Christmas day.

We stayed in all day playing games and picking at our Christmas meal. Levi “helped” with the deviled eggs as you can see.

MRI- Thursday

After our botched sleep study from last week I was praying hard that Levi’s MRI would go smoothly. We packed up and left the house at 5:30a the morning after Christmas and made the trip back down to the hospital. We had to stop his feeds around midnight so he was a hungry and cranky boy. On top of that Levi is now suspicious of everything that looks medical and everyone dressed in scrubs so as soon as we started the triage process he began panicking. With his medical history and compromised airway they decided that he needed to be under general anesthesia and intubated for the procedure.

If you have been reading the blog long you will know that I have some major emotional issues with the MRI room. When Levi was in the NICU they attempted an MRI here and it did not go well, so we had to do it again a few days later. The whole experience was very traumatic for him and I remember sobbing in the waiting room with uneasiness.

Then a few months ago I had to bring Malachi here for an MRI. It did not go well either and we ended up walking out- I turned into a basket case and had an emotional breakdown because it wasn’t the test they told me he would have. With Malachi’s medical devices (his shunt and the metal coil near his heart) MRIs are a little more complicated so changing plans last minute made me snap.

But here we were, back in those same chairs and in that same environment. The flashbacks were coming at me hard. Then a kid walked in the waiting room with the flu and snapped me out of my self pity mode and into germ blocking mode.

Levi did well during the procedure but needed to spend some time in outpatient recovery so they could monitor his respiratory status a bit longer than normal.

Youth Ski Trip- Friday, Saturday, and Sunday

On Friday morning we loaded up a few church vans and cars and drove a group of 40 to Indiana to go on a ski trip. Jake and I started doing ski trips back when we first became youth leaders at the church in 2012. It is something he and I did with his youth group in high school and became one of the highlights of our year- we wanted to be able to provide that for our youth group as well.

We took a few years off when I became pregnant with Levi but decided this would be the year we tried it again. Yes, we are crazy.

We knew it would be a lot of work, especially with the boys in tow but we didn’t account for how exhausted we would be with such a busy week leading up to it. Lesson learned! In addition to being exhausted, Levi’s throat was swollen from being intubated so almost everything he put into his mouth made him projectile vomit. We didn’t find this out until after we started our adventure of course.

We made the 5 hour drive and settled into the hotel Friday evening, getting rested up to start skiing Saturday morning. Unfortunately Malachi started running a fever overnight on Friday. He also started having some pretty big seizures that were exhausting him.

We asked some friends to pick up a thermometer and meds for us from the drug store down the road and tried to get the rest of the group ready for the day. The boys getting sick was one of our worst case scenarios- Jake needed to be on the slopes keeping an eye on the teens and I was to be the checkpoint in the lodge in case of an emergency.

We got everyone loaded up, geared up, and on the slopes and then the boys and I went back to the hotel to rest. Malachi’s fever on reducers was hitting in the 103s and he was miserable. I was debating what to do- should I load them up and make the 5 hour drive home alone? Or should I just tough it out and make the drive back on Sunday with the group? I was worried about him overheating in his car seat and it being too dark for me to see him in the mirror. With his seizures amping up I decided it was best for us to stay and just hunker down in the hotel room until the group left Sunday.

The three of us watched a lot of movies, played a lot of games, and took some solid naps. The teens had to text me every few hours to check in, letting me know they were alive and safe. Malachi didn’t get better but didn’t get worse; but he was struggling to keep down any of his meds, including his seizure medications. I finally got him to keep a bottle down around dinnertime. And Levi also stopped throwing up after his first round at the lodge during the check in process.

It was quite the adventure. I guess you could say it was a Carroll style trip filled with chaos.

We just got home a few hours ago and Malachi is very happy to be here. He smiled for the first time in a long time when he saw his Christmas tree lights. He also giggled at Jake, which was refreshing to hear. His fever is hanging around 101 but no other symptoms as of yet and his oxygen levels are at a safe range.

And he is officially wiped out and went to bed around 7:00. He has been going to bed around midnight lately so this is a obvious indication of how well he is feeling, poor buddy.

I had some really great friends from church join us on the trip, and a few of them offered to sit with the boys while I went skiing with Jake. I shrugged off the offer all day long, especially as Malachi’s fever didn’t budge. But two of these friends are nurses and continued to push the offer at me. The ski resort had a special on skiing from 8pm-midnight so at 9:00 I hit the slopes with Jake and got back just before midnight.

Jake and I love to ski together but haven’t had the chance to go skiing together in quite awhile. Actually, the last time we took a trip skiing together was 9 years ago at the same exact resort on the same exact day!! What are the odds!?! Here is a photo of 2010 and 2019.

 

It was so weird being childless. At one point Jake skied down the hill ahead of me and it was literally just me, zooming through the woods with the cool breeze on my face. I felt like a person I once knew. It was such a surreal feeling of carelessness. I can’t afford to be careless much anymore, so the fleeting moment was a special one. The fresh air was therapeutic.

Devotional Thoughts

When I write these blogs each week I very rarely go back and read them. I just type and ask God to write what someone needs to hear. And He always comes through, allowing my fingers to move regardless of my level of exhaustion or mental clarity.

But this week I read an old post from 2017 and realized that God may have just written that post through me for future Leah. Yes, I am aware of how sci-fi and odd that sounds, but as I read the entry it pricked my heart and spoke to me so loudly.

The backstory- we were in Cincinnati with baby Levi, living in a hotel room down the road from the NICU because the Ronald House was full. It was hands down the darkest time in my life. Nothing else comes close to those few months in Cincinnati with him. Here is the excerpt I would like to share with you tonight:

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I have been back and forth with what to share with you this evening. God has been placing so many verses and thoughts on my heart these days, and none of them seemed to feel right for this entry.

But as I read Isaiah 61 this evening I couldn’t help but get goosebumps all over my body. Chapter 61 is captioned “The Year of the Lord’s Favor” which made me laugh out loud as I thought to myself “That is definitely not how I would title 2017 for us Carrolls!”

But oh how I will pray and hope that we will be able to title our 2018 with such powerful words!

Now before I start talking about this chapter, let me warn you that I am totally taking these scriptures out of their original context. Isaiah wrote this chapter to foreshadow Jesus (a Messianic prophecy). In fact, in Luke 4 Jesus is in his hometown of Nazareth and is handed a scroll to read in the synagogue..and it was this exact chapter from Isaiah. He reads these words that were written about him so many years ago and then says “Today this scripture is fulfilled.” It is his drop the mic moment and leaves everyone there furious at His claims to be the Messiah.

But when I read this chapter I can’t help but desire to apply it to our situation right now, and it brings me so much encouragement. Let me highlight the verses that spoke to my heart. These words are my prayer and hope for 2018 for our family.

“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”

Whew I just got goosebumps all over again. The two lines that get me the most are:

They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

The Lord has clearly planted us exactly where we are right now. We aren’t in Cincinnati by chance; we aren’t in this situation because of something we did or didn’t do. I am choosing to believe that we have been planted here so that the Lord can display His splendor through our situation. So far we have had many dark days, but there will be a day when that darkness will be overpowered by the bright light of God’s glory. My prayer is that everyone who looks at our trials and bumpy road will undeniably see the hand of God completely in control of every second, and that in the end His splendor will overshadow any dark moments we have experienced.

The second line that blows me away is:

All who see them will acknowledge that they are a people the Lord has blessed.

Oh how I pray that line over our 2018. I pray that every member of our family would reflect the goodness of our God. I pray that instead of looking at our family with eyes full of pity, instead we would be seen through a lens that reflects the AMAZING blessings that God has given to our family…as unique and different as they might seem.

Every time we take Malachi out in public we are stopped by well meaning people and they say things that reflect the pity they have for us. “Your life must be so hard.” “God must think a lot of you to give you such a challenging life.” The looks and comments we get are absolutely saturated with a tone of pity.

We usually just smile politely but everything inside of me wants these people to see how blessed we are. We have two beautiful gifts from God. Malachi’s joy is unparalleled and clearly comes from the Lord. Yes, our life has unique challenges but oh goodness does it also have its innumerable unique blessings!

I pray that those words are spoken about my little family and that others would see us and say “Those Carrolls, they are a people the Lord has blessed.” I pray that those eyes of pity would become eyes of amazement as you can’t help but see the hand of God in our lives.

May our 2018 be full of miracles for both of my boys.

Merry Christmas from the Carroll family!

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As I read that I started to cry some necessary tears over how far the Lord has brought our family.

…to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

God has been slowly replacing our crown of ashes for a beautiful one.

We are being covered in the oil of joy instead of mourning.

God has replaced my spirit of despair with a garment of praise.

We have been through the Refiner’s fire so that we would be able to display the Lord’s splendor.

All who see them will acknowledge that they are a people the Lord has blessed.

Oh how I continue to pray this over my family. I pray that people look at our family and see God’s hand. I pray that we continue to see the blessings of the Lord instead of being clouded by the darkness.

I say all this to encourage each of you. You may be in a dark place right now. You may be suffering through some really big things…but those things might be a necessary step in your story. I pray that one day you too will stand on a mountain top and be able to reflectively see your past experiences in the valley from a new vantage point.

It’s our walks through the valleys that give us the desire to fight and climb to the mountaintops.

I am continuing to pray these verses over my family. And I have secretly picked out a fresh, empty spot on the wall for the words to go one day soon.

May God bless you as you enter into a new year. Please pray for sweet Malachi, that he is able to fully recover quickly from whatever is attacking his system. Please also pray for wisdom during this sickness, that I know when to react and when to watch and wait. Sicknesses always have the potential to bring on some major mommy guilt if I miss his cues.

God bless,

Leah

Tonight Levi and I were supposed to spend the night at the hospital for another sleep study. If you are new to the blog you need to know that I struggle tremendously with these but both Cincinnati and Chattanooga specialists agreed it needed to happen to check his carbon dioxide output and sleep cycles now that he is off of oxygen at night.

We went in with a genuinely good attitude and the best of intentions. Last night Levi had a g-tube malfunction around 3am and I had to get him out of bed to fix it. He decided he didn’t want to go back to sleep, and we obliged hoping he would be utterly exhausted for his big sleep test.

I spent the day packing his hospital bag with his favorite blankets, stuffed elephant, books, snacks, distractions…and I even cut his hair a few curls an hour (he didn’t want me touching it so I had to be creative) in preparation for the glue mess after.

As I made the one hour drive to Chattanooga in the dark and in the rain (aka ideal car seat sleeping) I periodically threw things back to Levi to keep him alert and awake. When that stopped working I found a roll of painters tape on the floor of the van and sent back 6 inch strips and let him be as destructive with it as possible. He is really into stickers right now so this was the next best thing haha.

These photos were from 6pm. Look at that exhausted face! The room wasn’t quite ready so I let him play in the fire truck for a bit, squirting him down with hand sanitizer every thirty seconds and trying to suppress my imagination that saw millions of germs breeding within the truck. I was just so desperate to keep him awake and active.

We made it into the room and Levi made it very clear we weren’t going anywhere near him with those wires. I got him to fall asleep by 8pm and we attempted to sneak the leads and electrodes on him. We got the two bands around his abdomen and a few leads fed through his clothing and he woke up in a rage- like Incredible Hulk style. He started grabbing and pulling any wires he could reach, ripping the lone successful one off of his head. He was thrashing around like a raccoon in a pillowcase so we stopped our attempts and I tried to get him back to sleep. Obviously our trust circle had been broken so getting him calm again was a challenge.

A bit later we tried again, same results. He also started hyperventilating and that makes me nervous with his oxygen history. After 4 hours of this we had zero leads hooked up and he was wide awake and not letting his guard down.

In order for the study to be successful you have to have 5-6 hours of solid sleep, and we had to be out of the room by 4:30am. As I looked at my wild eyed and terrified son and then looked at the clock nearing 10pm I made the decision to wave the white flag and leave.

Ah yes, the familiar walk of shame. We know it all too well haha.

The specialists will not be pleased with me, but I truthfully didn’t know what else we could do differently. I don’t know that any 2 year old would gladly allow 20 electrodes, a cannula, a pulse ox, two abdomen bands, and several other leads on his body while sleeping.

On Thursday morning at 6:30am we will be back at the hospital for Levi to undergo a sedated MRI to check the extent of his brain damage. The last brain images at two weeks old showed three small spots of brain damage, likely from a lack of sufficient oxygen. The neurologist is convinced he has incurred more damage since that original scan and wanted some new images. We won’t discuss the results of the sleep study or the MRI for several weeks so for now we are just focusing on getting them over with.

Obviously Levi has developed a fear of all medical providers, and I can’t blame the kid! He has been sleeping terribly lately and tugging at his ear so I was worried his ear infection did not fully clear up and took him by the pediatrician. Thankfully the infection is gone but sweet little Levi didn’t like them looking in his ear. I got him to crack a little smile through his tears.

We have been trying desperately to keep both of the boys in a bubble as we prep for Levi’s big procedures and our trip to the NICU to deliver Christmas gifts. Thankfully our pediatrician has a whole separate suite where the sick kids go, one of the main reasons I chose that particular office.

But we did branch out and attempt a few adventures this week! Every year an organization in Chattanooga offers free switch adapted toys for special needs children that use switches. Malachi has always looked forward to this event and loves getting to shop for his toy. We tried several, including the chipmunk that made him cry last year (yep, he cried again and signed NO NO NO) and he settled on a cute little fire truck. It blares a loud siren and the wheels spin which he really loves.

We are working so hard to teach Levi how to respect Malachi’s boundaries. He hasn’t learned Malachi’s signs yet and doesn’t know to look for them. So even when Malachi tells him no he ignores him, which hurts Malachi’s feelings. We made it very clear to Levi that the fire truck was for Malachi and he could sit and listen to it but not touch it. What a trial it is for an impatient two year old!

But Malachi LOVES showing off for Levi. He was so proud to show him the toy. And poor Levi communicates to Malachi with sign language, particularly “more”, and Malachi can’t see him. They need an interpreter right now but I know it will get better over time.

I can’t even begin to describe the bond these two have. It is such a pure and beautiful love. What a blessing Levi has to grow up with such a uniquely amazing brother.

We run into a lot of other children with special needs, and seeing Levi interact with them is so beautiful. He has no fear of differences, and in fact wants to embrace and love on them, just like he does for Malachi. One of Malachi’s special buddies at church has been the victim of his laser focus and he runs over to her to shower her with hugs and kisses, touching her face and talking so dearly to her.

This weekend we went to lunch with another special friend, Lincoln. Lincoln and Malachi spent time in the NICU together, although we didn’t connect with them until a few months ago. Lincoln and Malachi play on the same soccer team. By the end of the meal Levi was climbing Lincoln’s wheelchair to sit on his lap and give him hugs.

Sometimes there are hidden blessings in this life, and sometimes there are blessings that smack you right in the face…this is one of those. Our life is teaching Levi things that I could never teach. The empathy he is developing, and the vision he is developing to see through differences is something that only experience and exposure can create. What a wonderful person Levi will be because he has Malachi in his life.

I successfully swapped out both of the boys g-tubes this week! This is one of those things I put on the to-do list and consciously look over each week. But the valves were getting a little weak and the balloons that hold the tubes in place are leaking a bit so a swap out was necessary. Malachi handled it like a champion and it was the easiest change out for Levi, although he fought me like a squirrel.

Levi has been a toddler tornado lately and he is fast as lightning. These photos will provide a good summary:

Mommy tried to shower….this was 30 seconds after I got in…

Mommy tried to give Malachi a shower and started the water to heat it up; I carried Malachi in and found this…

Levi went to feeding therapy…yep…his hair is covered in a variety of sticky foods…

The closer we get to Christmas Eve the more excited I am getting! This week I have watched all the pieces fall into place, a clear sign to me that God is in this. Target donated giant bags for the moms to put their goodies in. We have gathered the most beautiful little Santa hats, created by some beautiful local people.

I have written each of the moms a personal note and reminded them that they are seen this Christmas and that they are loved. We are going to spend the next few days praying over each of the boxes and bags of gifts, praying specifically that they feel the presence of God as they open each one.

I keep flashing back to the Christmas in Cincinnati Children’s with Levi. He had just had a major operation and we were living in a hotel since the Ronald McDonald House was full. The hospital had a similar event and allowed me to pick some items for the boys…I didn’t realize until after how wonderful it felt to acknowledge the fact that I was a mother of two amazing children. Looking past the medical tubes and wires and trying to choose things that little Levi might enjoy made me feel like a mom.

I pray that each of these moms can feel that same flutter of normalcy.

We have literally received hundreds of items, over $7,500 worth of tangible things! Each mom will receive about $100 in presents and a $25 Chick Fil A gift card (not included in the $7,500). We have condensed the items down as much as possible for transport but will easily fill three trucks. Then there is the matter of getting the items up to the NICU hallway to set up the tables. It is SO HARD for me to ask for help, but no matter how I calculated it it simply was not possible to do alone. I posted on Facebook asking for help and so many people have stepped up to help make this a success.

There are two off duty nurses and four former NICU moms that will be there to help restock the tables as the moms shop. Our hope is that we can connect with some of them and become a support. We have created signs for each of our NICU grads to spark some conversations about particular struggles they might be facing.

Speaking of the NICU…this week I made a trip up to scope out the area. It doesn’t matter how many times I travel that path through the hospital…it always brings back memories and emotions. There are certain areas I have to visually avoid. The windowsills I had to sit in, catching my breath between sobs. The phone I had to pick up to ask permission to go in and visit my babies. The private room that Levi was in before his transfer had a door that led to the hallway. The spot I sat in waiting for Malachi’s second brain surgery to finish. I remember staring at the elevator doors, anxiously waiting for the surgeon to walk through them.

Ironically enough, our tables of gifts will be set up directly across from those same elevators.

But as I stopped by the NICU unit this week those emotions were a bit more subdued. They were still there, but it felt like a book I read a long long time ago instead of fresh wounds. Time has healed my heart in so many ways. And focusing on this special project has helped me heal.

I even picked up that phone to drop off an early bag of gifts to one of the moms we connected with through Facebook. I recognized the voice of the clerk on the other line but didn’t give any identifying information, just told her we needed to leave a bag at the desk for a friend. Within two minutes a flood of nurses came through the doors, so excited to hear that the boys had come by the unit for a visit. I guess the clerk recognized my voice too and announced over the intercom Malachi and Levi were outside haha!

Seeing those nurses was refreshing. I carry vivid memories of each of them, as they come to be like family. I can remember each of their eyes as I studied their faces so many times, trying to determine whether I should be worried. When you spend time in the NICU you become an expert at reading body language and unspoken emotions.

Both of the boys loved seeing the nurses too, Malachi in particular! He has such a good memory, part of me wonders if he remembers their voices from his stay or baby brother’s stay. The work that they do is so meaningful.

If you get time this week I want to encourage you to read Luke 1:26-38. It is a conversation we all know to some extent, the conversation between Mary and the angel Gabriel. But I never truly connected with Mary before I became a mother.

When you read it through the eyes of a mother things look so different.

Her reaction to the angel was much like mine would be. The Bible says she was “greatly troubled at his words”.

But the angel tells Mary: “Do not be afraid, Mary; you have found favor with God.”

Time out for a minute.

The angel came and delivered the news that she would go through a shameful pregnancy and birth the son of God…a child that would later die a cruel death that she would have a front row seat for.

There is a quote by C.S. Lewis that says “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

God knows each of us. He knows what kind of person we are and He also knows the extent of the burden that each of us can bear.

What if instead of feeling troubled by the big things God puts in our life we instead choose to see them as an honor from God? What if we begin finding strength in the idea that God chose YOU for this very challenge.

What if we begin to see ourselves the way God sees us…as highly favored and capable of so much more than we even know.

But the most beautiful part of this particular scripture is Mary’s response: “I am the Lord’s servant, may your word to me be fulfilled.”

What boldness!

Her initial fear turned to resolute steadfastness as she welcomed the challenge with the heart of a servant. She acknowledged that her life was no longer all about her, but instead about serving the Lord, even when that path would bring pain.

Life with these two boys is a challenge- one that I never saw coming. My life right now is a polar opposite from the one I envisioned a decade ago.

But God knew I wasn’t made for the typical. He created me for something bigger and greater than typical. He created me to carry the testimony of two very special boys. He created me to walk hand in hand with each of them and move mountains in their path.

Sometimes God’s plan for us isn’t typical, and we need to embrace that.

What an honor my gift of motherhood has been.

“What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

May God continue to cultivate my perspective as He continues to change the places I am comfortably standing. And may my heart continue to stay soft enough to gladly work for Him.

Much love,

Leah

 

 

We slipped back into our normal this week and attempted to re-establish our routines. We made it back to therapies with the exception of horse therapy; I was afraid the barn dust might aggravate Malachi’s breathing.

Levi is continuing to improve in his feeding therapy sessions, especially with his sensory issues. Mommy spends the hour trying to not focus on the crazy mess we make in each session.

He is also improving with his speech. His voice is very quiet due to the vocal cords not moving but we are just so grateful to be able to hear him at all! He is progressing with his sign language too and relies on his signs for many things. I took a video of one of his new words for you to hear his sweet voice:

Malachi stayed home from school with me this week as he still isn’t fully back to himself. His oxygen levels are still solidly safe but he is tiring easily and still having a few big seizures that wipe him out. We have been making the most of it and watching lots of movies, especially when he and Levi come to work with me. Recently we decided to let Malachi transition from little kid cartoon shows to movies with themes and plot lines. He has been loving the variety but he is SO opinionated!

He loved the Little Rascals.

He liked the first 30 minutes of Sound of Music then got bored. That was disappointing as it is my all time favorite movie! When Jake and I went to Europe in college we even went on the Sound of Music tour haha…and it was the highlight of our trip!

He really liked Home Alone but cried the second time I played it because he didn’t want to watch it again. I think it may have been just a little too intense for his soft heart.

And then there is Frozen which we watched 4 times in 2 days, and the Jungle Book which was another surprise hit.

We are trying really hard to treat Malachi like the six year old boy that he is and letting him do big boy stuff that Levi can’t yet do. We want him to recognize his individuality and savor those moments, because it won’t be long before Levi’s skill set surpasses Malachi’s and we won’t be able to make things so special for him.

So we decided to let Malachi shoot a cap rifle off the back deck! He liked the first two shots but the third one was a bit too loud and made him really really mad. I told him we were practicing shooting at the bears to scare them and he started crying…I guess he loves our bear friends.

Jake even got a snow day this week! This makes us sound like fatties, but one of our favorite things to do as a family is eat out. We hoard any and all gift cards that come our way throughout the year and cash them in on surprise snow days and breaks. I can’t really explain it well, but when we go to a restaurant together and eat as a family I feel so normal…there aren’t many activities we can do that don’t add a lot of stress/planning to our lives. Eating out is one of them, although Levi’s attention span seems to be amping the stress level up a bit.

We attempted the impossible this afternoon…family photos. It is not easy to capture flattering photos of Malachi but we managed to get some great ones! My friend came over and we spent an hour in the side yard then spent some time sorting through the thousands of photos and choosing our favorites.

Malachi thought the whole session was a hoot…

And little Levi was a trooper, giving us all the facial expressions we could have asked for…

Levi has been quite the ham lately and is doing some pretty silly things. When he gets awkward and uncomfortable he walks around, swinging his hands aimlessly and clapping. It is something that he picked up from Jake who does it quite often when he is in certain social settings:

 

I can’t help but flash back 17 years ago to teenage Jake asking me to prom. He was swinging his hands just like Levi, snapping his fingers in between each clap.

“Hey, uh Leah, uhhh want to go to prom with me?”

When I said yes he smiled and continued swinging, then slowed down and said “High Five?” raising his hand in anticipation. We high fived and he left the house. I laughed at how awkward the whole scene was, and still do to this day. So seeing Levi do the same thing really makes me smile.

Never did we imagine the road that God would take us down as a couple.

As we get closer and closer to Christmas Eve the stacks of our NICU donated items keeps getting larger. Jake and I have been speechless this week as we have watched so much love be sent our way. You all are amazing.

As of now we have received nearly $7,000 worth of donated items!!! Just process that number!!! When we started this project my aim was to raise enough for every mom to get something nice, so $1300-$1500 total. The amount of love we are going to be able to shower on them is so beautiful to me.

I have been in communication with a contact at the hospital who will be helping prep the area for our shopping event. Each mom will be given a ticket to trade in for a shopping trip through our items. We have sorted them into categories by price and each mom will be able to choose one item from each group.

I have also been in prayer over the notes I would like to include with each gift bag and God has prodded me into a direction! THIS is the highlight of the project for me- being able to share God with these moms. The presents are just a bonus.

What an opportunity we have been given to plant seeds in a ground that has already been tilled.

I was reminded of a verse this morning from Ephesians that says “For we are God’s workmanship created in Christ Jesus to do good works which God prepared in advance for us to do.”

We have been CREATED to do good works. And we don’t have to work really hard to find those opportunities…God has prepared them in advance for us!

So many times we see good works as something exceptional and special, something rare and unique. But if we all are being sensitive to God’s callings and follow through with the good works God places on our hearts then this world would be such a different place.

May we all eagerly seek after the things God has prepared in advance for us to do.

Please pray for me this week as I am having some major flare ups with my memory and PTSD. Two years ago to the day is when Levi was transferred to Cincinnati and almost didn’t survive the night due to a botched transfer process.

Every time I closed my eyes last night I flashed back to the image of the doctor standing next to Levi’s lifeless body and bagging him, his chest rising and falling with each pump of his hand. His chin was tilted up at such an unnatural angle and his skin was so white. I can remember the night and the scenes so vividly…my phone call to Jake, the eyes of the doctors, the tension in the room. All those emotions have been flooding back and frankly they have been overwhelming me.

Please pray with me that I am able to release these burdensome memories and hand them over to God.

I am also starting to get very anxious about our upcoming hospital tests for Levi- his sleep study and his MRI. I am not confident if the outcomes of these will bring good news or bad and the uncertainty tends to consume my thoughts.

Please also pray that both of the boys stay germ free and healthy, particularly through the holidays. We intend to include them in our Christmas Eve service project but obviously would never subject those NICU babies to big germs should they accidentally contract something between now and then.

Thank you for checking in on our family and for showering us with love and blessings with our NICU project.

Much love,

Leah

 

Some weeks are definitely harder than others. This was one of the hard weeks.

Earlier in the week Levi started acting a bit more clumsy than normal and became extra clingy. I hooked him up to his pulse oximeter machine and sure enough his heart rate was higher than normal telling me something was brewing in his little body. That night he stayed up all night in pain and started tugging at his ears so I got him in to see the doc when they opened. Sure enough he had a double ear infection so we started him on his ten day round of antibiotics.

Levi locked in on Malachi this week and decided that he would be his source of comfort. He insisted on being as close to Malachi as possible all week, which Malachi loved. At the doctors office he wouldn’t let us take him off of Malachi’s chair.

This morning was spent in the emergency room with Malachi. Late last night I noticed his breathing changed a bit. I hooked him up to Levi’s pulse oximeter and it showed that has oxygen was dipping much lower than his normal. The oxygen saturation goal for everyone is 100, but Malachi’s normal is 97. While he was sleeping it was dipping down to 89 and wide awake he stayed at 93. I took his temp and he was starting to drop too low, leaning towards become hypothermic so I bundled him up. Within a few hours his temp went to opposite direction and he started running a fever so I stripped him back down and decided we needed to go in and get checked for pneumonia.

He worried me enough that I decided to put him on some supplemental oxygen, but even with 1 liter of O2 he couldn’t get above 94-95. Needless to say I was very thankful that we had little brother’s equipment on hand to keep him from a late night ER trip.

I was confident they would see some cloudiness in his x-rays of his lungs and admit us so I packed my overnight bag and mentally accepted spending the night in the hospital. But thankfully while his lungs showed some junk there doesn’t seem to be any infection brewing *yet*.  He tested negative for the flu and RSV, praise the Lord! Obviously he has something viral going on so we are praying hard against whatever is affecting his breathing.

This evening he is doing a little bit better and his oxygen is hanging around 95 without any supplemental oxygen. He doesn’t look nearly as sick as he did this morning so I am feeling better about the way we are headed. We will be watching him closely though!

While we were in the Emergency Room for a few hours we got to hang out with our favorite respiratory therapist Ryan. It is always so cool to me to see the look of recognition on Malachi’s face when he hears voices he hasn’t heard in awhile. He really loves Ryan and his face showed it. I am so thankful that even the darkest parts of our world have people who genuinely care for my boys.

With the boys both out of commission this week we had to cancel all of our appointments, including Malachi’s neurosugery appointment. Specialists like these fill up fast so re-scheduling happens months from the planned date. I hate missing them but also don’t want to pass any illness on to other immuno-compromised kids.

It may be the emotions of the week getting to me or it may just be mommy hormones but y’all… I cried my eyes out at a dinosaur show this weekend.

Back story: several weeks ago I saw that a dinosaur exhibit/show was coming to a convention center about an hour and half from where we live. I immediately thought to myself how much Malachi would enjoy going and hearing the animatronic dinosaurs as that is his current obsession along with superheros.

But as the week went on and both the boys weren’t at 100% I talked myself out of going. The more I tried to push it out of my mind the more it forced itself to the forefront. We woke up Saturday morning and Malachi was doing surprisingly well so I loaded him up for a mommy son date at the dinosaur show. We made the long drive and the whole time I talked up the event, building up his anticipation. He was wide eyed with excitement by the time we got there, ready to see some real dinosaurs.

The lights were dim, perfect for Malachi’s poor eyesight and he eagerly tried to look at every single dinosaur that we passed, smiling when his brain allowed him to get a glimpse at them. I narrated as much as possible to him, adding in things like “oh boy that one is looking at you Malachi!” Within minutes I felt so good about my decision to take him as I watched him with his boy wonderment.

There was a portion of the event where they had 8 giant dinosaurs that you could get on and “ride”. There was a set of stairs leading up to where you climbed on top and as I surveyed it I thought that I could easily and safely get on there with Malachi if they would let me. I went to the information desk to ask and the kind man called in to check with his manager. They told me there was a 140 pounds combined weight limit, and hate to break it to you all but I am not 100 pounds. He said they were sorry that they couldn’t make an exception but encouraged me to bring him to the dinosaur show and they would make sure he got to pet a baby dinosaur.

I was disappointed but totally understood the reasoning and started to wheel Malachi to a different part of the event. But when I looked down at Malachi he had such a disappointed look on his face. And that’s when it happened…my heart broke. Malachi had clearly heard and understood my conversation with that man and was incredibly sad that he wasn’t going to be able to ride a dinosaur. His eyes were just so sad and his face reflected it.

Seeing that look on his face broke me. I bent down and talked to him about what had happened, crying as I watched him process my words with such understanding. He was straining to see the other kids riding the dinosaurs as I talked so I told him “a secret” and said that the dinosaurs they were riding were just pretend but that he was going to get to pet a REAL dinosaur like the man had promised. He perked right up and I tried my best to stop crying as we went to get a good spot for the dinosaur show.

They had a gate/wall set up in a horseshoe shape with a tent in the middle where the “real” dinosaurs were sleeping. We found a spot right up against the fence and waited patiently. They brought out two big dinosaurs and Malachi was giddy with anticipation. They explained that the dinosaurs would walk around their side of the fence and you could pet them gently if they came close. I watched Malachi’s eyes light up at this and when he heard them getting close he mustered up all his little might to pick up his arm and lift it towards the dinosaurs. I was legitimately proud of how controlled and serious he was about getting his arm up there all by himself.

But the only problem was…he didn’t touch the dinosaur and it moved on to the kids next to him.

That was his last straw. My sweet little disappointed 6 year old lost it. He started crying uncontrollably over his missed chance to touch a real dinosaur. I wheeled him away from the fence and we cried together as I tried to mend his broken heart. I was mad at the stupid dinosaur (aka the person in the suit) for not recognizing his obvious attempt to touch it. I was mad at myself for bringing him to an event that allowed him to experience disappointment. I was mad that I am too overweight to ride the dinosaur with my son. And so I just held him close and we cried together for an embarrassingly long time.

I felt so foolish sitting in the corner alone with my son and crying about fake dinosaurs. I started reconsidering if I should even try things like this with Malachi- take him into environments where he can accidentally be excluded. Wouldn’t it be easier on his emotions to keep him in our safe bubble in our hometown?

I decided we needed to just leave and chalk this one up to a “good try” moment. I even googled Chuck-E-Cheese thinking maybe I could find one on the route home to give him a highlight for the day. But then I remembered that the man promised to let him pet a baby dinosaur. I wheeled him back over to the fence, ready to kidnap a baby dino if necessary to bring a smile to Malachi’s face.

Thankfully they were very gracious and made sure he got to touch all three babies. They even opened the fence and gathered around Malachi for a picture at the end of the show, something they didn’t do for everyone else. I can only assume they saw our tear stained faces and knew we needed a pick-me-up.

After he got to pet the “real baby dinosaurs” I let him pick out a few souvenirs and Malachi quickly morphed back to his sweet dino loving self.

He even picked out a few new accessories to put on his arm rest on the wheelchair and a tail to strap on to the back of the chair. Levi is modeling it for you.

Would I do it again? Oddly enough, yes. He really did enjoy the mommy and Malachi one on one time. And there were more things there that made him smile than the number of things that made him cry.

Malachi is getting smarter by the day. I love watching him interact with his world in his own unique ways.

So after a long, emotional week I am exhausted. Malachi and I have been camping out in the living room so he can sleep upright in his chair and baby Levi must think he is missing out on a fun party because he is no longer sleeping at night either. There have been nights this week where I have gotten a total of 2.5 hours of sleep.

Instead of hosting the youth group at the house tonight I decided to drive them into town for a meal and just some hang out time. I didn’t even realize I drove the church bus home until it was too late haha! Oops!

But in the midst of the hard stuff this week I had some beautiful moments. Every single day I came home to a stack of packages on the front porch for our NICU Christmas project. When I was planning this all out in my head I made it my goal to get each of the moms a gift, so about 70 items. But after just one week we have collected nearly 300 items and have 150 NICU friendly outfits.

I have been genuinely blown away by all the giving hearts that we have around us. As I opened each box and read each note I was awe struck…old high school friends, former teachers, complete strangers, NICU nurses. It was such a much needed reminder to me about the unique ability that God has to draw an audience for His purposes and His glory.

I read a quote this week: “Train your mind to hear what God whispers and not what the enemy may be shouting.”

There have been so many moments in my week that have spotlighted my failures. There are things that have highlighted my inadequacies and our weaknesses as a family. The devil has been shouting all week long.

But with each box that I opened God reminded me that our trials and our hard journey has a purpose. We were meant to spend time in the NICU so we could see a hurting world and bring light to it. We were meant to have special needs children and connect with other moms that haven’t yet found the hope that God brings. We were meant to write this blog and share the God that lives in us.

This week God has whispered to my heart that He has created our family for such a time as this.

I am getting more and more excited to see how God is going to work through our NICU Christmas project. I believe fully that someone will come to know Him through this. I can’t wait to see what seeds we can plant for Him to water. Be in prayer with me over the special notes I include with the gifts, that they are the exact words that need to be spoken to these hurting moms.

And please continue to pray for health in our family. Especially for Malachi’s lungs to continue to refuse any infection!

Thanks for listening to me ramble on each week. Much love to all of you.

Leah

What a week we have had!

Let me kick off this entry by telling you about Malachi’s big debut as Grand Marshal of the Christmas tree lighting in our small town! Malachi has been so excited about the big day and we started practicing at home with his recordable switch. We would turn the lights off and he would activate his switch that said “Ready, set, light up that tree!” and when he pushed it we would flip the light switch on.

When the big day came he was ready to roll. We had family come into town for the big event and a visit so I gathered all the children in the group and let them do the recording into the switch so they could be involved as well. It was a rainy day but they had a tent all set up and ready to go for the Grand Marshal.

Malachi gets overstimulated very easily, which is completely understandable to me. If I had trouble seeing things I think I would get overwhelmed too! I was watching him closely and could tell he was really trying hard to process all of the familiar voices, the rain, and the new environment but he was clearly loving all the attention.

The tree was beautiful and Malachi was one happy boy. We watched the video over and over again at home and his reaction really warmed my heart so I thought I would share it with you all:

And here is the actual video from the event if you would like to see:

I wish I could see the world through the eyes and ears of Malachi. He has such a gentle and content spirit about him that is breathtakingly beautiful.

A special thank you to all of the people in our community who came out in the rain to make sure he had an audience. You made his day by making him feel so important and special. He even had a special shirt given to him for the event.

Side note- Malachi’s sickness continued to progress throughout the week and has turned into a cold. He is nearly through the worst of it but with him things linger much longer than normal. His seizures were a little more intense this week than normal but we are through the worst of it. His oxygen was settling around 94 which is low for him but not yet hospital worthy. Nighttime was exceptionally rough for him so he and I have been camping out in the living room where he can sleep upright.

I also got his cold and it has knocked me down! Anytime I get a bug, even a mild one, it turns into a sinus infection that takes a few weeks to get over. I am so thankful that Levi and Jake have managed to stay healthy. I am also thankful that Jake had the entire week off. Malachi and I spent some serious time cuddling this week.

With it being a holiday week our appointment schedule was nice and slow- a much needed break. The boys did a few therapies at the beginning of the week (pre-cold) but we had Wednesday through Friday off. This coming week things amp back up with some big specialist appointments at the hospital. December is always a bit rough as we try to cram procedures and surgeries into Jake’s holiday breaks. This was actually the first Thanksgiving break in years we haven’t had a surgery! It was wonderful.

I got some really sweet photos of Levi one day this week as we headed to the grocery store. He was in some cute overalls so I plopped him in the side yard for some photos. They captured his personality so much more than I even imagined.

Totally random side note, but the gap directly below the setting sun is where the bears come in and out of the woods and up to the porch. We haven’t seen one in about two months so we are hoping they are all tucked in and asleep for the season.

Jake and I don’t really do Christmas gifts so Black Friday is a little out of our comfort zone but we did need to run by Lowe’s for a few things. I am still on the fence as to if it was worth the chaos haha.

We did stay in and play a lot of games as a family! Don’t tell Malachi but for one of his Christmas presents we ordered a switch adapted card shuffler so he can participate in our card games.

We also spent a lot of time with our out of town family which is always wonderful. Levi especially loved chasing his big cousins around. And Malachi genuinely loves listening to other kids play with all of his toys, as odd/sad as that sounds.

We knocked out some much needed cleaning and organizing around the house and Levi has developed a hat obsession. He carries one with him at all times around the house. Some are more ridiculous than others…

 

This week we celebrated Thanksgiving. The holiday has taken on a whole new meaning now that we have two medically complex children. We are thankful for every day that goes by without a medical emergency, a life altering seizure, or an airway emergency. We are thankful for every night not spent in an ICU or hospital recliner. We have experienced horrific things, so when life is “normal” we are overflowing with gratitude to God. When you know the darkness of life, you crave basking in the warm sunlight as a family.

God has blessed us with a season in the sunlight. But we are also very aware that there are others stuck in a season of darkness.

Both Jake and I want to cultivate a life of giving in each of our children. We want them to understand that they can be used by God to bless others, but in order to do so you have to watch for opportunities and act when you see them.

“The real issue in life is not how many blessings we have, but what we do with our blessings. Some people have many blessings and hoard them. Some have few and give everything away.” -Mister Rogers

This month Jake and I are gathering items for our local NICU. The plan right now is to pair the event with a Christmas Eve brunch they are offering NICU moms and have a few tables set up with all of Malachi and Levi’s favorite NICU items. Boppy pillows, musical toys, sound machines, books, soft (and non blood absorbing) blankets…all the tried and true items that I clung to in the NICU for each of their stays. The moms will be able to come and choose a few things for their warriors and I will be including a special note that God is laying on my heart.

When I look back at their time in the NICU there are two big tangible things that I cling to: early GOOD photographs of the boys and their first outfits. I treasure those things even now. We were able to sell several big items from around our house and raise enough money to buy each baby an outfit and also purchase a Santa suit. We are going to offer each of the moms a chance to let Santa pose for a pic with each baby and my professional photographer friend will take the photo and email it to them that same day.

Here is an example from Google images:

We need a willing Santa on Christmas Eve if anyone out there is interested!

We are working right now on collecting items and want to extend the invite to you. We have created an Amazon wish list and if you purchase from it you will have the option to ship it directly to me at the checkout (it has our address hidden but attached to the list). If you would like to contribute to the table of goodies click on the link below; there are items ranging from $4-$40.

https://www.amazon.com/hz/wishlist/ls/37UQ7Q8QWB5NI?ref_=wl_share

If you aren’t a big Amazon fan and want to donate some money towards items you can contact me at: jacobandleah@gmail.com

We can’t wait to watch God work in this, as this is a task He has called us to do! Whenever He calls us to act we are always blown away by the results.

Ephesians 3:20 “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory…”

Please pray for the boys this week as we fight to get back to full health. Pray that God continues to cover Levi in a hedge of protection, which He has so clearly done this week. And pray that Malachi is able to continue to keep things from settling into his lungs. 

And please say an extra prayer for us on Tuesday as we tackle 6 appointments, starting the day off at 7:00 and ending around 4:00. Game on!

Much love,

Leah