Let me start off with a sweet video of the boys. Malachi loves to lay next to Levi, and lately Levi has been getting a bit grabby. I have been watching closely to make sure he won’t hurt Malachi but their encounters bring me so much joy:
The calendar. Ugh. I know I talk to you often about the love/hate relationship special needs parents have with the calendar, and this week has been no exception.
As we creep closer to Malachi’s big foot/hip surgery on November 20 I have started having to officially book his g-tube surgery so it can be done prior to. This week we spoke with the surgeon and have scheduled it for October 29. That means that Malachi will be having two relatively big surgeries within 3 weeks of each other, and that thought terrifies me.
June 2016 was the last surgery for Malachi- almost two and a half years ago! Praise the Lord that we have not needed anything surgically fixed recently for him!
With his imagination running wild these days I snagged him some Hulk hands to pretend with.
We are still waiting to hear back about scheduling Levi’s second sleep study, which I am in no rush to do. In the meantime we are turning up his oxygen at night and naptime to keep him more comfortable. After the results from the next sleep study come in they want to do another scope procedure in Cincinnati around the month of December.
I hate seeing the word “surgery” on my calendar, and to see it three times makes my stomach churn. Not to mention all the pre-op and post-op appointments and bloodwork and multi-day hospital stays each of those will bring.
Malachi’s mysterious fevers are still come and go; he has another low grade one right now of 99.5 but it seems to be dropping quickly. It sounds like a conspiracy theory but it has happened the last four times he has been in the church nursery (he was the only kid in their all four times). I spoke with the neurosurgeon who said that if it were shunt related the fever would be consistent and stick around, so we are feeling more comfortable about that. He is still getting to sleep in the big bed with mommy and daddy most nights so I can keep a close watch on him, and he is still loving it.
Some sickness has been floating around the county so we decided to keep him home every day this week except for Friday when he has his physical therapy sessions. Some of his classmates and teachers had households with strep victims so we thought we would play it extra safe. He did get to play in his soccer game on Saturday and his excitement leading up to the day was so fun to see. It takes him a little while to grasp a new schedule change and this was his breakthrough week where he was excitedly anticipating the day.
We took our high school soccer team to a game at Lee University on Saturday night, and naturally the boys joined us. Levi wailed every time the crowd went wild and Malachi was so incredibly invested in the game. I sat with him and gave him the play by play of what was happening and he hung onto every word. Lots of giggles and laughter for him that night.
Both of the boys met with their new feeding therapist this week and I am so happy to report that I feel it will be a perfect fit! He is a Christian and believes in the same manner we do regarding Malachi’s quality of life and us wanting to make however many years he has on earth exceptionally fun. So if that boy wants to eat a half a bowl of queso at the Mexican restaurant (true story from Thursday by the way), then by golly we will let him! We want feeding to be fun and not torture for him.
Our goals for the boys are so drastically different when it comes to eating by mouth. Levi is a trickier case as we have to make sure we aren’t sending any liquids down into his lungs. My goal for him is safe eating until a) God heals him, b) his vocal cords wake up, or c) he is old enough to verbalize how comfortable he is managing liquids. Our overarching goal for him is to get his g-tube permanently out.
Meeting with a new therapist or specialist is quite the task for a single one of my children, let alone both at the same time. I keep a summarized copy of their medical history with me at all times and use that to drive the conversation. Usually by the end of the conversations I have used enough medical terms and acronyms to somehow convince the person that I have a background in healthcare….definitely not the case! Just a momma who loves her boys. The medical histories portion alone took a solid hour to cover on Tuesday.
We will be adding feeding therapy sessions for each boy to our Tuesdays. Sweet, solitary Tuesday are now being overtaken by yet another therapy. In addition to our specialist appointments that means we have:
Monday- physical therapy for Levi
Tuesday- feeding therapy for both boys
Wednesday- horseback therapy for Malachi
Thursday- occupational therapy for Malachi
Friday- physical therapy for Malachi
This is a before and after of little Levi during a tickle attack from Malachi.
While we spent most of our week tucked away at the house, we did venture out with Jake to Home Depot on Monday. We trialed putting Levi in the carrier with all of his gear hanging off Malachi’s wheelchair which worked great until Levi decided to vomit. Obviously our rigged up system turned lots of head and started lots of conversations.
Has God ever laid something on your heart? Pressed something on your mind and you just can’t think of anything else?
Lately my mind has been stuck on moms in the NICU. September is NICU Awareness Month, and after 243 days in the NICU it definitely is a topic that hits home. The heartbreak of being in that environment is something I wouldn’t wish on anyone. Days went by and it was all I could think about. I finally settled on turning those thoughts into action and resolved to buy some gift cards and hand write some encouraging cards for them to go into. I figured I could send them to the NICU with some of our nurse friends and they could pass one out to a mom who was having a rougher than normal day.
Then 6am Thursday rolled around and I was wide awake laying in bed with both boys sleeping in the room with me. I wanted so badly to sleep but I felt like God was telling me to get up and write. I tried to ignore it and go back to sleep, thinking I would just write it later but I continued to feel an urging so I got out my phone and typed out what was on my heart.
Later that afternoon I made a Facebook post with the writing, offering for anyone else that wanted to donate money towards a gift card to send money to my Paypal and I would handle the rest (you can read the post at the very bottom of this blog entry). I thought it might be nice to be able to donate 20-30 cards. So far we are up to 93 gift cards to make NICU moms feel special and loved!! How amazing is that!! If you have any interest in donating, our PayPal is: https://www.paypal.me/miraclesformalachi
It might take me a few weeks but I will be chipping away at the handwritten cards part of this project, praying that God gives me the words to write in each one and then gets that specific card into the hands of a mom who needs to hear them. I am excited to see where God is going to go with this one!
Okay, so why the story? This whole thing was just another reminder to me of the importance of listening and obeying God. We talked in Sunday School this morning about priorities and I explained how in our lives we no longer ask “Do we have time for this?” but instead we ask ourselves “Does God want us to do this?” When God calls us to do things we are seeing time and time again that he opens doors that have been bolted shut and gives us a strength that supersedes anything we could do on our own.
God is a multiplier. He takes what little we have and he makes it something BIG. Like the five loaves and two fish miracle from the New Testament, God can take the meager rations that we have and use them to spiritually feed thousands. But we have to offer him the fish and loaves. We have to be willing to give him all that we have left.
We see this played out in our lives on a daily basis. I should not have any energy with the amount of sleep I get each night. My mind has no opportunity to relax and reset. Yet God continues to press me towards tasks He has chosen me to do…and I have learned that if God is leading me to do something that I need to obey.
Yes, that means that when you look in from the outside at our crazy lives you will tell me that we are involved in too many things…coaching soccer teams, running an indoor soccer league, youth pastor, starting a children’s ministry (that’s this weeks new addition haha), and so much more…
But what you may not understand is that God has CALLED Jake and I to do each of those things. We don’t do they because we are bored, need the money, or feel qualified. We simply do them because we feel like they are each a ministry. God wants us to be involved in those things. Our job is to recognize God’s leading then sit back and watch him multiply it. Watch Him turn it into something special.
But how many opportunities do we miss when we don’t listen to God’s leading and follow it? So my challenge to you this week is to be sensitive to the things that God lays on your heart. Don’t dwell on them until you forget them….act immediately and with excitement and anticipation as you watch God work through them.
And one final laughable note…almost exactly one year ago I wrote a Facebook post about my pregnancy. At this stage, everything was looking wonderful and there were no issues with Levi at all. I was a few weeks away from giving birth and had done an update with a list of 10 things people may not know about my pregnancy. The list ended with this:
10) We believe firmly that God has BIG (and I mean HUGE) plans for Levi’s life. I can’t tell you what they are yet, but world- you better watch out because he will be moving some mountains just like his big brother.
Wow! That is all I know to say.
Here is a copy of my lengthy Facebook post:
NICU Awareness. Anyone want to help bring a blessing to someone in need? Warning: Long Leah post up ahead haha…
Imagine unexpectedly leaving your home today and not going back for 4 months. And when you do return it is like a perfectly preserved time capsule of a person you used to know- but your journey has changed you beyond recognition both physically and emotionally. You see all of the hopes and dreams you envisioned for your pregnancy and unborn child and have to hold them up against the reality of the experience you have been given.
The NICU is a world I never knew existed until a was abruptly thrown into it. The NICU is a place of acronyms you have to google. A place with a smell you will never forget- not bad, but memorable. It is a place where you unknowingly memorize floor tiles after spending weeks watching your tears hit them. It is a place of isolation and loneliness. It’s a place where you learn how to read the faces of doctors, prepping your heart for the bad news they are about to deliver.
Between both of my boys I have spent 243 long days in the NICU…that calculates to 9 months. Those are days I get nauseous looking back on- but also know I wouldn’t have wanted to be any other place than fighting alongside my warriors boys, each with their own unique NICU journey. Malachi, born at 24 weeks without a heartbeat. Levi born healthy at 34 weeks with a rare diagnosis of bilateral vocal cord paralysis. Who would have ever imagined that my 34 weeker would outstay my 24 weeker by 3 weeks. The NICU world is full of surprises and a variety of babies and conditions.
The NICU is a place of heartbreak as you have to helplessly watch your children suffer. Moms of typical newborns hold their baby within minutes of him being born. NICU moms have to wait for permission to touch their child with a gloved finger. And in our case wait three weeks to hold that sweet baby for the first time, unable to move due to ventilator tubing but soaking in the opportunity to feel that 1lb 12oz miracle physically become a part of me again.
The NICU is a place where a mom doesn’t get to be a mom. A mom becomes an overseer of monitors and alarms, even though you have no clue what to do when one goes off. A NICU is a place of bad memories, like watching your son code and seeing them tirelessly fight to bring him back as they mechanically squeeze breaths of life back into him. It is watching your child’s head be tilted back at an unnatural angle as they shove yet another breathing tube down his throat. And then watching him cry from the pain but not being able to hear him due to that tube. It is truly a place of heartbreak for a mother.
But the NICU is also a place of miracles. A place where you literally get to see the impossible happen. You celebrate things you never even knew you should celebrate…the first poop, a PICC line being able to be taken out, an IV stick on the first attempt. The first audible noise your child makes. The celebration of simply surviving another surgery after spending hours in a room on your knees praying.
The NICU is also a special, one of a kind place. A place where you bond with strangers as you see the same pains and struggles written on their face. A place where you will meet some of the kindest and most caring nurses. These nurses become your only friends who “get” it, they become your child’s biggest cheerleader, they become your psychologist as you continue to process the emotions of what is transpiring. They look past your irrational moments and ugly crying because they know it is fueled by a mother’s love.
In the NICU you don’t get to be a mother very often. So you cling to any moment that allows you to feel like one. A diaper change every 3 hours, a quick glimpse at a tube free face when respiratory changes out the machines, suctioning out secretions from a tiny little mouth hoping to bring some relief to your warrior. All while whispering encouragement to your precious child that life is going to get so much better for him if he just keeps fighting.
One of the hardest moments for me was going out in public after having Malachi. No one knew that I was a new mom, after all I didn’t have a baby to show for it. But I remember the joy of going to the store the first time after having him and walking to the baby section. I BELONGED in this section. I HAD a baby to shop for. My baby was a fighter. And picking out a blanket for him that day was the best thing for my hurting mommy heart. I had 20 brand new blankets at home for him, but for some reason those blankets bought in preparation just didn’t seem special enough- or fitting for the situation. They were reminders of what should have been. I did the same thing for Levi and the healing that happens in that moment is indescribable. You feel needed…like no one else on earth knows which blanket, stuffed animal, outfit, or toy will bring YOUR baby comfort. But you do, because YOU are his MOTHER.
This year for NICU awareness day I want to provide that “mom moment” to others in the NICU and I thought I would extend the blessing opportunity to you. I will be purchasing gift cards to some stores close to our NICU in Chattanooga and writing out cards to put each one into. When a mom is having a harder than normal day- a day when the emotions get too much to bear- I want the nurses to have a stack of these blessings to draw from. A chance for a mom to get away from the NICU and do a Mom thing. An excuse for her to breathe some fresh air guilt free as she shops for her baby.
So will you join me in this project? I will do all the hard work for you, just PayPal whatever amount you would like to contribute! And if you don’t know me personally be assured that every penny you send will be used as promised. What an easy way to send a big blessing to a fragile mom.
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Send all contributions to our PayPal: https://paypal.me/miraclesformalachi
If you would like to mail a contribution just send me a private message for my address. And thank you for helping me accomplish something that God has laid on my heart.