The Lanning Family

Hi everyone,

As a close friend of the family I would like to thank everyone so much for the outpouring of love and support given to the Lanning family in their time of need. Jeremy’s mother and sisters and I have been working behind the scenes to make sure everyone stays informed and that Jeremy, Melissa, James, and Lucas get everything they need right now. Please reach out to us if you need to. We are all celebrating the small victories he makes day to day. Thank you all from the bottom of our hearts! Janine, Janelle, Johanna, and Carolyn

The Lanning Family has been anxiously awaiting the birth of their son, Lucas Warren. Their beautiful boy arrived May 23rd, however, he has been fighting for his life in the NICU. It was a long and unexpected journey to get to the birth alone. Right now, they need all the love and support, and prayers that we have to give. Here is their original birth announcement posted to social media:

Friends and Family:

Our son Lucas Warren Lanning was born on May 23rd, 2023. 6lbs 4oz. 18.5 inches tall with a complete and full head of beautiful jet black hair. Right away it became clear that we had an uphill battle on our hands for his life, and ours… which was unexpected. He was immediately taken to the NICU at Baylor Hospital where he spent the first few days of living fighting for his life. He has been transported to Cook’s Children’s NICU where the battle continues - for his life - and for answers. Traumatic nightmare. We were informed that we have a significant stay ahead of us. We are shells of ourselves, blind-sided, and devastated, yet we feel God upgrading our software minute by minute and our love has never been brighter, our bond has never been stronger, and our dependence on each other has never been more welcome and profound. Please pray for us, please send loving vibes, and please keep us in your thoughts.

Jeremy & Melissa

If you are able to help them please consider donating and lifting them up in prayer.

God works all things together for good for those who are in Christ Jesus. Continue to seek him, for comfort, strength,wisdom, and knowledge.

Romans 8:28

Trust in the Lord with all your heart. Lean not on your own understanding, but in all your ways acknowledge him and he will direct your path.

Proverbs

Update: 5/29/2023 - From Mom and Dad

Baby Lucas is letting the world know that he is a fighter and he desperately wants to grow and thrive. He has been opening his eyes and engaging the little muscles that he does have. Daddy has been reading him “My Side of the Mountain,” and Momma has been reading him “The Adventures of Winnie the Pooh.” Mom and Dad are fighting too we have been blown away by the outpouring of love, prayers, and support. The road ahead is long and unknown, especially at this point. The Lannings are in survival / revival mode and are trying to adjust to what life looks like now and may look like in the future. We are not in control and we know that. We have never needed help like this before and we have never received help like this before. Everything is new. Lucas is leading this family in the most beautiful, remarkable, and intoxicating way. Our family now includes every single one of you. We are all fighting for Baby Lucas.

Jeremy & Melissa

Update: 6/2/2023 - From Mom & Dad

We’d like to start by thanking everyone for the outpouring of love. It has been unbelievable. Friends, family, acquaintances and perfect strangers have shown us support logistically, emotionally, spiritually and financially. Thank you all for the calls, texts and sweet words of encouragement. It has made this nightmare bearable. We apologize for having not been able to get back to everyone personally. Please know that it means so much to us (and Lucas) to have so many people praying miracles over him.

While he is still in the NICU, he continues to get a little stronger each day. He is off of his oxygen, but is still needing all of his feeds via a feeding tube in his nose. The tests that we have received back so far, have been normal (Praise the Lord). They are still trying to determine what exactly is going on, and we are waiting for additional tests that will take another 3-4 weeks to result. If you all could specifically pray for supernatural healing and God’s continued grace and mercies for Lucas’ little body

Jeremy was able to baptize Lucas this morning, with the help of the hospital chaplain. A valid Catholic Baptism registered at St. Mary’s of the Assumption. It was a beautiful ceremony at his bedside. We are praying for a Celebration of Welcome at our parish once Lucas is well.

Thank you all SO MUCH for rallying for our perfect boy. We are so grateful.

Jeremy & Melissa

Update: 6/11/2023 - From Mom & Dad:

“Again, we cannot thank everybody enough for the tremendous outpouring of support, prayers, and kindness. We are worn out but we are living prayerfully and hopefully. Currently we are awaiting our third round of genetic testing - as of yet we just have no answers. Lucas is fighting so hard and at times the quality of his breathing is still positional. He is such a fighter and he loves the sound of the ukulele. He has been able to take a few ounces of formula by mouth via a bottle and that is such a victory for mom and dad and especially for Lucas. He sure does love visits from his siblings and his uncle Chip and he’s getting great care from the angels at Cooks Children’s Hospital.”

Jeremy & Melissa

Update: 6/16/2023 - From Mom & Dad:

From Us - (Melissa wrote this. It’s beautiful.)

I know we owe everyone an update, so that’s what this is. I’m going to go back to the beginning (sort of), so scroll on if the story is too lengthy.

Jeremy and I found out we were pregnant on Wednesday September 21, 2023. We were in Target (shocking, I know) and the Eagles’ song Peaceful Easy Feeling was playing when we received the phone call that afternoon. We were ecstatic.our fertility journey was riddled with a few speed bumps, so we decided early on that we would avoid making a big announcement (social media) and just celebrate BIG once our kiddo arrived safely. We really only told close family and friends.

It was a relatively uneventful pregnancy. Due to my age, we were followed closely by my primary OB and also a high risk OB (both of whom are incredible, by the way). All of our testing was normal, the fetal echo was normal, Lucas looked stellar at every single appointment. I had two isolated episodes of bleeding (no culprit was ever identified), and after 33 weeks was put on modified bedrest by my providers. Our little guy continued to excel in utero and passed every BPP and NST with flying colors each and every week. No red flags, no abnormal doppler flows, nothing. He looked just like his big brother James on all of his 4D sonograms.

I was scheduled for an induction at 39 weeks (Yay! We made it!), and we had the very best team taking care of us. Lucas made his arrival at 8:04pm on May 23 (much easier delivery than with his older brother James!). Rather quickly I think both Jeremy and I knew that something wasn’t quite right. No real vigorous cry, no movement or reflexes, no angry face/grimace. Just really puny, for lack of a better word.

For the sake of time, I’ll condense this next part. Lucas was taken pretty immediately to the NICU. He was put on oxygen and a feeding tube was placed. Initially, the only working diagnosis we had was hypotonia (poor tone/no tone). He didn’t cry for many days, he didn’t really move, couldn’t suck or swallow for feeding purposes, he had absent reflexes, he didn’t open his eyes. The battery of testing began the day after he was born but it would be weeks before we had any answers. He was transferred to Cook when he was four days old where the testing continued.

I remember during his first week of life begging, PLEADING with God to save our baby. I could not fathom going home without our baby. God, please let Lucas be ok. We would leave the NICU and go home every night unsure if he would ever see his nursery or use his stroller or be swaddled with his blankets. James was devastated too (all of the kids were). He was looking forward to sharing his Star Wars toys, and playing catch with his little brother and teaching him all about being a master Lego builder. He even said he wanted to share his Nintendo (writing that down as future proof).

Lucas was three weeks old on Tuesday June 13, and that’s the day we got the third round of genetic testing back (first two rounds of tests were negative/normal). Prader Willi Syndrome. Ugh. Please don’t google it. There’s not much out there that you will want to read. There isn’t much that WE want to read. To say that we are devastated is an understatement. 1 in about 30,000. And here we are. Part of a club we never wanted to join. Things being asked of us that we aren’t sure we can do. This is not what we imagined. This wasn’t part of our ‘plan’. We have no idea what Lucas’ future looks like, and that is, perhaps, the scariest part of all. What I do know, is that we will do absolutely anything to make this the best life ever for him. PT, OT, speech therapy. Cook just opened a Prader Willi Center less than a year ago. Yay? So there’s that.

We are terrified. Angry. Furious, actually. Sad. Trying to be hopeful. Exhausted. Worried about what kind of life he will have, worried about people being mean to him, worried about who will help him if something happens to us before he is older. This week has felt completely overwhelming. Please continue to pray for Lucas. I haven’t lost hope that God can still provide healing and peace for him. Lucas’ life will be full of purpose and full of love and full of laughter (he is already smiling quite a bit!). And in the midst of all the challenges and struggles, will be moments of beauty. We will make sure of it.

We have been TERRIBLE about getting back to everyone. Please know (to all my lovely coworkers, friends and family, Jeremy’s colleagues, friends, clients, patients, and strangers) that there are not words to convey how grateful we are for you. The calls, the texts, the Venmos, the gofundme donations. You guys are sustaining us. Even when we respond with silence, know we are reading every message and they are helping us get up each morning and put one foot in front of the other. We can do this. Thank you ALL for standing with us in support. Love you guys to the ends of the Earth.

A life lived differently, is not a life less lived.

Lucas Warren Lanning, thank you for teaching us so much, so quickly. We won’t let you down bub. Promise.

Update: 06/25/2023 - From Mom & Dad

“You have to let this change you.” It’s solid advice that I’ve been given at times over decades of adult life. I’ve heard this about parenting, about moving to Texas, and about marriage. I find myself administering this very advice to myself now. Lucas is on the verge of being discharged yet we keep experiencing what appears to be set-backs… the most recent set-back is bloody stool. We’ve been trained and tested on inserting nasogastric feeding tubes into Lucas’s stomach and using all the corresponding equipment. He passed his car seat test and he has the ability to sleep on his back for now. My wife and I put all the big emotions on the table in the morning and we negotiate who gets to feel what during the day and how big we each get to feel any given one. The days where it’s impossible to fight off anger are exhausting, second only to fear. “Our home was prepared for a baby, not a patient!” “How will the world treat him and just how cruel can it get?” The world feels so dangerous now. We can’t handle one more thing. What if something happens to Mel? To me? It goes on and on. At the same time we have developed our NICU family. It’s like “Cheers,” and I mean family. There are a handful of people that will never be out of our lives. When something like this happens it is surprising who drifts away from you and who comes running towards you. Lucas has already made the Cooks NICU so much more prepared for the next kid with Prader-Willi or any other ultra rare genetic disorder. He is already helping others. From day one, this boy is helping. From day one he matters. We have no idea how we move forward. Every path is unclear. What is clear is the love and support from so many. We wouldn’t be surviving without it. The prayers, the calls, the financial support, the “showing up” that so many have done. Our eyes have been opened… and to see y’all reaching for us is remarkably beautiful.

Update: 07/03/2023 - From Mom & Dad

Directly from Melissa and I… Thank you. Thank you for everything, the prayers, the vibes, the support, the shoulders, the everything. We absolutely cannot believe the outpouring of support, from likely places, unlikely places, mysterious places, familiar places, and unknown places. The outpouring of support which is still going has been creative and at times clairvoyant. We have been in places of zero darkness and in places blinded by the light of joy. We could not have weathered this without you and we cannot weather this without you and most importantly… we cannot wait to repay you all, somehow, someway, someday. We love you. We literally could not have done this, and cannot do this, without the support. It was the perfect storm that simply rolled into our life and upset our entire system, and still is. Melissa and I are evolving and adapting. We have wide ranging big emotions every minute. Y’all are not only our family, but you’re our ballast as well. Now… Lucas… his fight is amazing to behold. Watching him try to smile and fight until he forces his muscles to make it big is my favorite. Our floor time is priceless. Melissa is amazing. Mel is not only his God given extraordinary mother, she is also his divine case manager and biggest cheerleader. I can’t tell who I’m learning more from. Sure our home looks like a hospital, but that’s life, that’s love, that’s beautiful. We have doctors appointments, specialty appointments, support groups, PT, OT, SLP, you name it coming up regularly. What a blessing. We are still stunned and angry and all the other big emotions, but we’ve got this, because of you. I thank God every day that we’re not limited to loving a memory. — Lucas isn’t sure about bath-time or the outdoors yet but he loves his music, from the Grateful Dead and Dave Matthew’s to New Order, Pink Floyd, and Arlo Guthrie. He’s got taste. Our world is rocked and our heads are “bloodied but unbowed,” but we wouldn’t have it any other way. We do not know what tomorrow looks like, but we do know it looks like family, and in the end… that’s all we got.

Jeremy & Melissa

Sailors Son

A Poem for Lucas

The days they move so quickly slow

As the evenings seem to come and go.

Yet the mornings pack a ruthless blow.

Of fear and dread and vicious woe.

Through waves of tears I find your light.

And find it makes the darkness bright.

I run to you and hold you tight.

Yet find myself unmatched in might.

There’s little room for pride or greed.

And the only truth is your next need.

So on my knees I beg and plead.

That from your suffering you’ll be freed.

The days they move so quickly slow

As the evenings seem to come and go.

Yet the mornings pack a ruthless blow.

Of fear and dread and vicious woe.

Stay strong, my son and sailor on.

The sea is weak as you are strong .

Peace and calm are deeper down.

So man the helm my sailor son.

Dad.