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.
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.
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:
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!
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.