Payton Marie Update | 8/31/25

Hey all,

 

Sorry for the long delay in any updates. It’s a busy world around here. There really isn’t too much to update on either. Payton has 2 hours of PT every day, 1 hour of OT, and 1 hour with SLP. She’s on conditional NG feeds which depend on how well she eats her breakfast, lunch and dinner. Currently her NG feeds are winning. 

 

She’s made some great progress in her stability in sitting. She’s able to sit in a chair fairly well on her own and can sit with a table or something like that in front of her as well. Depending on how tired she is she can sometimes sit totally unassisted as well! She’s also made progress in rolling on her own. She can get to each side pretty quickly, just not to her stomach on her own quite yet. We’ve done lots of assisted standing with either braces, harnesses or our favorite is a standing wheelchair that she gets strapped into and then can wheel herself around! 

 

The KKI team here has been great. She got an EMG done this past Wednesday to take a look at her nerves and get an idea on prognosis as well as confirming the type of GBS she may have. They have also asked the question among themselves in the Neuro team if this is for sure GBS. They have sent out some mitochondria labs which would indicate if there’s any potential of this actually all being some form of genetic issue that can mimic GBS in which case this would/could be her first episode of many. Not really much details on that end but they are doing everything to make sure we know what’s going on which we appreciate a lot.  They drew the labs on Saturday, 8/30/25, and expect them to take about a week to come back. We will update once we hear back on those!

 

Lastly, assuming all goes well we have been told that she should be discharged Oct 3rd. This depends on how she progresses and our level of comfortability in where she is at for home care etc. We will have a resteer meeting in another 2 weeks or so to somewhat confirm this or discuss if she could possibly benefit from another week or two. 

 

Please continue to pray with us for our sweet girls recovery. That this would “just be” GBS and not some other thing and that we get quick accurate answers to the labs and that the teams here would all have wisdom in Payton's care and therapies. 

 

Love to you all,

Aaron, Darienne, Louie, Payton & Ryder

Payton Marie Update | 8/22/25

We have made it to Kennedy Krieger Institute (KKI). We transferred late Tuesday afternoon, arriving around 6pm. We have gotten fairly settled in our little room. We could theoretically get a neighbor, which I really can't comprehend because our space is rather small as is. We are doing well overall. No major changes really since last week except for the transfer. We’re meeting all the new doctors and specialties up here. We get a schedule of our appointments each day and it has a blank chunk around mid day for a nap! We are very hopeful that this will all help Payton to get back to a more normal sleep schedule. Our days will be very busy, with 4-5 sessions each day it seems, rotating between SLP, OT, & PT. I am sure there will be some other random things at some points as well. 

 

She has done so well in her therapies so far and we’ve seen more and more progress almost every day. Yesterday she was sitting up in a seat almost all on her own. She would use her arms to support her on a table in front of her but would still be able to lift her arms for brief periods and sit totally unassisted. We also got our first real bath/shower in 5 ½ weeks!! We’ve mastered bed baths pretty well but obviously NOTHING compares to an actual shower. 

 

They have their big team meeting on Monday, so after all the specialties get a chance to look at her and work with her they’ll determine how long of a course we should expect. Once they all meet, they will bring us into the meeting and let us know what they are thinking.  We’re preparing for the long haul like we have been told but definitely hoping and praying for a fast recovery. Their magic number seems to be about 8 weeks as we’ve talked to a few other parents here but God has his plan which is better and more grand than anything we could ever think of or even hope for. It might not always be fun, and I’ve said it before that watching Payton work so hard to do things she's been doing for a year is so hard to watch especially as she is frustrated or in pain etc. but again Gods got us covered. 

 

Please continue to pray with us and for us all.

Payton Marie Update | 8/14/25

Another few big days here! Payton has been completely on room air for several days now. No cannula at night for monitoring anymore either. She’s slept so much better the last couple nights. Immunologies panel came back almost totally clear. Nothing really of note there. We will have a follow-up on bloodwork in a couple months it sounds like to confirm all has totally normalized. Hematologies additional labs are outstanding but those were all just precautionary with zero expectation for them to be abnormal.

 

She has also made big advances in her feeds! We are at full nutrition through her NJ tube, which goes into her intestines. Tomorrow we should be pulling it back to NG (stomach) and we will see how she tolerates it. Prayers for that!! We think it should go fine as she has also been eating little bits by mouth! Speech/pathology worked with her today and cleared her for a soft, bite sized diet. (Which honestly isn’t far from where she is at baseline) She’s still very slow and doesn’t take much in this way but it's a fantastic and very encouraging step.

 

Another exciting thing from today was that her PICC line was removed! This was the last line in Payton, so now she just has the NJ tube!

 

We have also been moved out of the ICU onto the main neuro floor as she doesn’t have any more ICU care needs. This is a bit of adjustment but also came with a big corner room with views of the Washington monument, capitol building and the Basilica, which is quite ornate even from far away. This also means Ryder is allowed in her room and just overall simplifies life for us at least through the weekend. Our next big change comes Monday. We will be transferred to Kennedy Krieger Institute for inpatient rehab for an indefinite amount of time. We have been told, “weeks to months”. We hope/assume we will have a better idea of timeline early next week. 

 

We are at one month in the hospital today. It has been a crazy ride and we know there is so much work yet to come but we are so excited that the “scary” part is over. The highlight of my day today was being able to order “room service” with my little peanut and eat together. She was able to eat super chopped up noodles and meatballs. It was just a surreal moment. 

 

Updates may be a little slower in coming as we expect a little less change day to day, but will do our best to still update at least twice weekly and hope for continued prayers and encouragement along the way.

 

Love to you all,

Aaron, Darienne, Louie, Payton, & Ryder

Payton Marie Update | 8/11/25

Hey all,

 

Here’s a few updates from over the weekend. Our girly has been on room air since the 8th! She has been doing great and everyone has said as much. She has still gone on the bipap machine at night to help make sure while she sleeps she stays well inflated and we don’t have any issues. We have started conversations about eliminating that as well. We’ve gotten to go outside at least for a brief time each day as well. They have a wonderful area here on her floor called the “healing garden” and it has a little water feature that’s been great for racing some little toy boats and rubber ducks down. Payton is a big fan!

 

Payton has continued to show improvement in her hands, arms and head/neck strength. Her legs and overall trunk still seem very immobilized. She’s getting some much more intensive PT and OT sessions each day now and it’s giving us a taste of what our next steps will be. Once she’s cleared from the ICU, mainly just waiting on the nightly bi-pap and gastrointestinal stuff, we will be transferred to Kennedy Krueger Institute for inpatient rehab for several more weeks to maybe some months. 

 

She has tolerated her trophic feeds very well. She’s up to 12 mL/hr and that continues to increase incrementally every 12 hours and we switched from Darienne’s pumped breastmilk to elemental (very broken down) pediatric formula. She has also pooped at least 4 times in the last 36 hours or so which is a big improvement along with her not spitting up/throwing up anymore. This will also allow them to start weaning her IV nutrition, which ultimately means getting her PICC line out once she’s fully transitioned. So she is overall doing really great! Lots of great news and things to praise God for.

 

A couple outstanding things we should hear about tomorrow have to do with some bloodwork numbers that have been off. Her eosinophils have been up significantly from baseline which would indicate some sort of allergic reaction typically. No other labs they’ve run have been able to pinpoint an exact reason for this. Infectious disease ran a couple parasite labs which were clear and Immunology has also come up short, pending a broader immuno panel that will take up to a week to get results on. She also has some abnormalities in her slide review of bloodwork, showing some increased abnormally sized and shaped blood cells. We are waiting on hematology to get back to us with some explanation on that. 

 

If all goes well then we could certainly be transferring to KKI in the next week or maybe 2 and then the real work begins. It’s very hard to watch and help with the therapy sessions as she gets very clearly frustrated at not being able to do things and overall still just being uncomfortable from nerve pain and having different lines in etc.

 

Please just keep praying for us in this journey as we continue to navigate each aspect. Thank you all for continuing to support us and pray for us.  Pray that for Payton’s heart and spirit as we start transitioning to a lot more demanding therapies. 

 

Love to all

Payton Marie Update | 8/7/25

A couple more days filled with great progress. She has excelled now that her breathing tube is out. She has gone all day today on just a nasal cannula. She goes back to the nasal bipap when she sleeps just to help make sure her lungs stay nicely inflated. 

 

She continues to have less and less lines hooked up to her which makes it so much easier to hold her and even go on a short field trip outside to the family garden here at the hospital. We also got a special exception visit from big & little brothers today! The Child Life Specialist team organized with management for Louie & Ryder to come up to see Payton and it all lined up so that we spent a little time outside playing and then inside our room. Such a wonderful time to have our whole family of 5 together again!

 

She’s doing more and more with her hands and arms, not much with her legs yet. She has much more intensive PT and OT sessions now that her breathing tube is out so she gets quite a workout in for her worn out weak little body, but she is doing so good with small improvements each and every day!  (Look at the photo album for some of the things shes gotten to do!)

 

Lastly we started a super slow and small continuous feed into her NJ (Nasal-jejunum) tube. This is just a super slow 2 mL/hr feed to start to see if her bowels will work again and if she can tolerate it without throwing up again. We are very hopeful but cautious with this and our attending has been great for these steps this week. She's been all about trialing “new” things for her but with definite care and caution to make sure we think it through, watch her closely, and just don’t try to outpace her recovery. So we are super thankful for that!

 

Please pray for continued strength and recovery in ALL her nervous systems. Please also pray she can get into some sort of rhythm for sleep as shes now off sedations that’s a little harder to come by. Thank you all for your continued love, prayers, and support.

 

A, D, L, P, & R

Payton Marie Update | 8/5/25

Another pretty short update full of progress and excitement for us. First, Payton is free of her breathing tube!! Second, she has been weaned off her dilaudid drip and should be off oxycodone (which they use a super small oral dose of to help wean off the dilaudid) in the next couple days. They agreed to take her Foley catheter out as well and she’s proved already that she can pee on her own again by peeing three times already!! So many answers to prayers in these big steps today. 

 

With the breathing tube out she’s on a bipap on very minimal support. Originally she was on a full mask that didn’t fit her little face very well so they switched to the lower support option of just a nasal bipap and she’s held strong. They think we may be able to move to or at least trial high flow nasal cannula tomorrow. In a less critical state of breathing on her own she’s also able to wear Jammie’s now! So the ones we had on our list that were gifted to us are getting used now and we’re all so excited about that and loving her in clothes again. 

 

Last but certainly not least, she said “mama” & “dada” for the first time in 3 weeks!!! 

 

Thank you thank you for your prayers and praise with us for this day!  

Payton Marie Update | 8/4/25

Payton’s little update today: Dr decided to let her rest today and plan to extubate tomorrow to give her the best chance of success. She did great on over 24 hours of pressure support trial (no ventilator breathes just a little oxygen and pressure cuz she’s still basically breathing through a straw) while we want the tube out! We also wait patiently and believe this gives her the best chance.

 

Thanks all for your prayers.

Payton Marie Update | 8/3/25

Payton has had a very stable weekend full of small but incredible improvements. She is using her left arm to shake rattles and play lightly. Her right arm she will give high fives with and play just a little. Still just a little wiggling of her feet and toes but it is just so joyous to watch this girl play again. 

 

Our attending doctor for the week has been absolutely amazing. He’s spent a lot of time with us discussing what he’s seeing, possible treatment options, his concerns etc. He even searched the PICU closet and found a new little doctor set for Payton to have and play with! She was so excited and wouldn’t take the little glasses off! We had to ask several times and finally convinced her to take a break by making sure they’d stay on her table in clear site. 

 

Another amazing thing today was that I got to hold Payton for a few hours and give her snuggles.  It was amazing to hold my baby again for the first time in over two weeks.

 

They have also done a lot over the past couple days to test her respiratory strength. They did an 8-9 hour CPAP trial yesterday where they pause the simulated breaths on the ventilator and just provide a little extra pressure support to compensate for her breathing through a tube. She did fantastic yesterday and has now been on the CPAP trial today since 7am and will stay off simulated breaths as long as she stays stable until they are ready to extubate either Monday or Tuesday assuming all looks good!!

 

Please pray that she continues to do well and we can get her breathing tube out for good!!! With what they see their biggest concern is for her to be able to handle her secretions. This is what caused her emergent reintubation last time so definitely a bit nerve racking for us. Once the tube comes out it’ll be a watch and wait for a couple days before we start next steps of seeing if she can tolerate feeds through her nasal tube again and start working more with OT and PT to get her moving again!

 

Thank you for your prayers & love to all,

Aaron, Darienne, Louie, Payton, & Ryder

Payton Marie Update | 8/1/25

Payton is done all her treatments! She finished off PLEX on Wednesday and that was followed with IVIG treatment Wednesday and Thursday night. She's not had any adverse reactions to any of the treatments so far which is a huge blessing. We have also started to see more and more movement!!

 

She can move her arms a little, and move her feet and her toes and do a little wiggle dance with her shoulders. Every small improvement gets a big celebration and we pray that just continues and that she amazes us and all the doctors with a remarkable and fast recovery from what they’re telling us could be 1-2 years of PT, OT, etc.

 

She still has her breathing tube and all sorts of other lines all over. We’ve made big steps to minimize her support from the ventilator but the biggest struggle seems to be handling her saliva/secretions. That is a big unknown variable for when the tube comes out for if it will need to go back in if she can’t swallow well enough to handle all that while keeping her airway protected. At this point they’re aiming for some point late next week to extubate. If that goes well the other biggest thing keeping us in the PICU versus the neuro floor would be her other more regular autonomic functions like urinary retention and bowel dysmotility getting better. 

 

Once on the floor they’ll work more heavily on swallowing and feeds and at some point in that we’ll likely get transferred to the Kennedy Krieger Institute for in-patient rehab for several weeks to some months. It’s hard to get any straight answers really, mostly because so much is just determined by how her body will heal. 

 

On another bright note, Darienne, Ryder and I went with Darienne’s family to the Savannah Bananas Banana Ball game at Camden Yards this evening. It was our longest time we’ve had to spend with Louie since Payton was admitted and it was truly one of the hardest, most heartbreaking experiences I have ever had. To be there as an incomplete family having missed my Louie boy so much and being so incredibly proud of him for being so strong and brave through all of this and missing my Payton Girl laying in a hospital bed even though we’d just left her. It’s a feeling I can’t truly describe other than just broken. So please pray for all of our hearts as we continue to walk through this as a family. But we have faith and confidence that cannot be shaken.  We are so thankful to Rene’ for staying back with Payton while the rest of us went to the game.  She kept us updated with pictures and videos of all that her and Payton did while we were away. 

 

“No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”

Romans 8:37-39 ESV

 

We can never be separated from his love even if we are separated from each other and feel broken. 

 

Shoutout to Darienne’s brother and sister-in-law for just rolling with Louie as if he was one of their own crew. We could not imagine a better situation for him to be in amidst this where he gets to be loved so much and get to have so much fun and work out so much energy with his cousins. We are incredibly blessed. 

 

Thank you again to EVERYONE. Everyone who has been praying with and for us, everyone who has shared words of encouragement and sent notes or text, everyone who has sent gifts, gift cards or donations to help cover expenses and my time away from work. So many nurses and hospital staff have walked into our room and seen Payton’s wall of notes or heard of the gifts she’s received and have been saying that they can just see how incredibly loved us and our sweet girly are. So again, we say thank you.

Payton Marie Update | 7/30/25

PLEX round 5 has begun! This is her final PLEX treatment & then we will do 2 more rounds of IVIG hoping to start this evening & then the 2nd round would be tomorrow evening. 

 

We are also hoping this means the lines in her neck in her jugular artery will be removed tomorrow as they won’t be needed anymore for PLEX.  

 

Payton had a pretty terrible night last night throwing up 30+ times in less than 4 hours, so we are desperately praying that is behind us! 😩😭 

 

Please be praying over this last PLEX treatment & the next two IVIG treatments, that they would help speed the healing of our precious girls body & that we can start making progress towards being extubated! 🙏🏼🙏🏼🙏🏼

 

Also - shoutout to Aunt LeeAndra Edmonds Mills for Peanuts new curious George 🥰 she loves holding his hand while she watches a show 🥹💗

Payton Marie Update | 7/27/25

We’ve thankfully had a pretty slow weekend. I went home for a few hours yesterday to do a few things for work as well as taking Louie for a haircut and a treat afterwards at his choice of Dunkin Donuts. Loved seeing my boy while also missing my girly. Very hard to quite literally have all three of our kids in different places not able to have even 2 of them together.

 

Payton has continued to show small movement in her hands and arms and has also wiggled her toes and legs just the tiniest bit, but its all so encouraging to see even if it isn’t leaps and bounds. Shes regained some of her personality too, she’ll smile around her breathing tube and give us some looks with her eyes that just sparkle and make our hearts melt. She did have a BIG poop yesterday after the additional medicine and another enema. Shes been working on getting the gas out and she’s seemed more comfortable as well.

 

She’s got a new friend who she loves to snuggle from her Aunt Leeandra and Uncle Randy who came to visit over the weekend. (See picture) We and she in particular have so enjoyed reading our many new books and eagerly await when she’s able to color and play with the other toys and things that friends have so generously sent our way.

 

Pray that her Mon and Wed treatments go just as well as the first three and that they see everything they need to to avoid extra treatments. Pray that we can try Darienne’s breast milk in her NJ tube and that she would be able to keep it down as nothing else has worked. Pray that hopefully towards the end of the week we can start discussing extubation again! Praise for the progress we have seen and praise for a quiet weekend. 

 

Payton Marie Update | 7/25/25

Day 11/12 in the hospital and no real end in sight. It’s easy to get discouraged along the way. One moment I can be full of hope and confidence in progress and stability and the next struggling to see the end of this “journey”. I remember again 2 Corinthians 12:9-10. His grace is sufficient, his power is perfect in weakness, I am content so that HE can do his work. It’s not about me, or Darienne or our family, or even little miss Payton laying in her hospital bed. It is about Christ. We know he will shine through, he will comfort, he will heal what is meant to be healed and restore what’s meant to be restored.

 

We have completed 3 plasma exchange treatments now and we have seen some small improvements in Payton's movement. I think the reality you have to understand is that in just about every way Payton was and for the most part still is entirely paralyzed. With it being caused by GBS it should all or almost all be temporary but that’s where we got to, literally zero movement, almost no reflexes, nothing. BUT GOD is working after even just her first PLEX treatment she moved her arm. It was small rolls at first, just a flick of her wrist but it was movement. Shortly after she briefly picked up her whole arm and moved it. Since then she has been able to roll her other arm back and forth a bit and has flinched/twitched her right leg when stimulated. Her eyes have been able to open more and she’s regained a little head movement.

 

We’ll get the tiniest bit of a smile when we're talking to her, as much as one can really see with a breathing tube in, and we’ll get yes and no head shakes to questions now as long as the room isn’t too crazy and she’s not agitated. 

 

Our most recent, or really continued setbacks have been surrounding her lungs and her GI track. She’s needed a bit more support and supervision over her ventilator and oxygen saturation balanced with her Co2 saturation. Which is somewhat to be expected the longer she’s on the ventilator, but it’s hard steps to walk especially not really knowing for sure when we will see strength return to that part of her body and how long that will take especially if we continue in even a slow decline outside of what GBS is doing. Her GI track has also certainly been majorly affected. We finally got a consult from the GI team here and they have recommended to start some other medicines that should stimulate actual bowel contractions and movements opposed to the bowel regiment she has been on that’s really just treating for constipation. We pray that starts without a hitch and makes some progress to help Princess P get more comfortable. 

 

We hope and pray to see even more progress over the weekend and for some good rest. Then we wrap up the PLEX treatments next Mon & Wed unless they determine a need for any additional treatments. After that should be the repeat dosing of IVIG and then that’s really all they have for her. Everything will be supportive care, PT & OT. So please pray that the continued treatments work as well as the first ones seemed to. In other good news Princess P got to sit in a chair for the first time since she’s been admitted. A lot of moving parts to get there but she loved it once all was settled!

 

Please continue to pray through the list on our support page. Please continue to share prayers and verses. We need the prayer. 

 

I also wanted to specifically mention how God has been at work through your support for us. We have been blown away at so many points, from how quickly Payton’s Amazon list empties each time we try to think of anything else sweet girl would need/want. The things off her list that were so incredibly thoughtful that we never would have thought of. ALL of the people who have gifted gift cards or financially to us. We are just truly amazed and in awe of the love and generosity. The gofundme and a few other direct financial gifts have been an unexpected blessing specifically that has allowed me to take the time to stay with Payton and has significantly decreased our financial stress surrounding medical bills, on the go food, and more. My employer has been very generous, kind, & flexible with me and I am able to do some remote work, but the financial gifts are what have given me the true flexibility to not go back to work full time yet and hoping that it carries through until Payton is at least out of the PICU. 

 

Again a big thank you to everyone for the prayers, verses encouragement and support. 

 

Love to all,

Aaron, Darienne, Louie, Payton, & Ryder

Payton Marie Update | 7/23/25

https://open.spotify.com/track/6ye2zG3DhdwDf6VRVyj4jx?si=dGwYYzrOQHOzZd5umMUgpQ

Listen to this song by Brandon Lake called Hard-fought Hallelujah

 

As I listened to it today it just resonated with a conversation Darienne and I had today. Just the complexity of moving Payton from one room to another right now along with the procedure of placing a PICC line, which is a fairly mild procedure, and just the weight of it all. It seems simple and small in a moment of description but to stand and walk and watch all this happen just slowly gets heavier and heavier. Each day is another day of fighting to say hallelujah. Regardless of how she is doing, how busy a day is, how small or large a procedure is in the grand scheme of things there is weight to it but we lift our hands a little higher and shout our hard-fought, heartfelt hallelujah.

 

Wow what a BUSY two days it has been!! 

Yesterday, 7/22/25, Payton received her first PLEX treatment & did SO well! 🙌🏼

The doctors told us we wouldn’t see any changes with the PLEX treatments until after the 2nd or 3rd rounds. 

 

BUT they don’t know our GOD! 🥹 within a few hours of her 1st treatment, Payton moved her left arm so much more than she has in the last week!  Watch until the very end of the video for the biggest movement!! 🥰🙌🏼 (Video on Facebook if you’re friends with Darienne) 

 

Today, Payton went down to IR (leaving the room is a VERY involved process in her current state) to get her PICC line placed so we could start TPN (full IV nutrition) since she hasn’t received much nutrition since we got here over a week ago!  She hasn’t tolerated NG tube feeds, so this is in place of those for now.  Payton got to see Ryder in person for the 1st time in a week today since the transport elevator is in the hallway, Ne’ was able to stand in the hallway with him as she was rolled by! 💕

 

Tomorrow we gear up for the 2nd round of PLEX & are praying she handles it like a champ! 

We also received a million packages at my parents house that my dad brought to the hospital this morning & we are SO OVERWHELMED with how much our community is loving on us during this incredibly difficult time. 

 

Thank you all from the bottom of our hearts 💕🫶🏼

https://www.gofundme.com/f/hope-and-prayers-for-payton-a-tiny-warriors-fight-with-gbs

Payton Marie Update | 7/22/25

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

2 Corinthians 12:9-10 ESV

 

Payton is the strongest little girl I have ever met, on the outside her body is failing but on the inside God is at work. I am the proudest Dada in the world of how my baby girl has come through so much in her short little life and we pray this verse over her and us in this situation that for the sake of Christ we are content with the hardships and weakness, all the while praying for a miracle and praying for healing and praying for recovery.

 

Today we agreed to start treatment with the 5 rounds of plasma exchange so it has been a day full of nerves. She has done fantastic through each part and stayed stable and comfortable while more sedated in order to accomplish each step. They placed an arterial line and a dialysis/apheresis line so they can more closely monitor her labs and vitals and perform the plasma exchange. She’s done great through the whole first treatment and we pray and hope that after the course of 5 of these we will start to see miraculous improvement and healing. The first was done today and the rest are currently scheduled for Wed, Fri, Mon, Wed.

 

Just pray that they all go smoothly and that she tolerates each one without any more stress to her little body. Pray she stay comfortable and all the lines stay sterile and in place exactly how they need to be. The first one went smoothly and whether an act of God or the first round accomplishing something already (very unlikely based on what they’ve told us) Payton moved her arm today more than we have seen for several days! Praise God almighty and pray it continues!

 

Tomorrow they also plan to use imaging to get her feeding tube past her stomach into the intestine to get feeds going again as she wasn’t tolerating feeds into her stomach as we believe her bowels have been at least somewhat affected by the GBS and the constant sedation. She’s been at about 25% of nutrition since she was admitted and we fought so hard to get to her 19-20lb still petite little self so just pray that we can get all that sorted out so that isn’t one more thing to fight for recovery in.

 

Tomorrow they are also putting in a PICC line where they will start TPN nutrition to ensure we have a steady way to give her nutrition moving forward, regardless of what’s happening with her feeding tube. 

 

A dear friend started a gofundme for Payton and our family as well and we are just absolutely blown away at the love and generosity being shown through that. We are so grateful and appreciative of that and it will alleviate a lot of stress from us as we go through this with her. Our primary support we still ask and plead for is for prayer and encouragement as so many of you have done. Linked on the support page and I’ll leave it here as well. https://gofund.me/e46a7407 

 

I’ll also be doing my best to keep the “support” page updated with our primary prayer requests so you can have a reference point to pray through. Thank you again for your prayers and all the love and generosity in other ways of support as well.

 

Love and thanks to all,

Aaron, Darienne, Louie, Payton, & Ryder

Payton Marie Update | 7/21/25

Another very busy day today. Payton has stayed stable and mostly comfortable. She’s finally pooped today which is very exciting because her last poop was last Monday morning before we were ever admitted. No other cultures have come back as of yet, but we‘re treating for a bacterial infection in her lungs. 

 

Unfortunately we have not seen any improvement in Payton's condition since the IVIG treatments last Thur & Fri, so the discussion has turned to next steps. We had a loooooong conversation with all of the head doctors from the PICU & the Neuro teams & so much was discussed. 

The very short version is they are expecting us to be in the PICU for probably the next month (WHAT?!) & then still several weeks in the hospital, on the general neuro floor after that.

 

It is very clear to everyone now that Payton’s case of GBS is severe & not what they typically handle & she’s so small which is not their typical either, so they are adjusting expectations based on that.

 

We will likely be moving forward tomorrow with the next “treatment” option which is Plasmapheresis or plasma exchange. That will entail 5 cycles over the next 10 days & will hopefully aid in faster healing than the IVIG has thus far.  Once the 5th cycle is done, they will wait 24 hrs & then do two more rounds of IVIG like they did before - 24 hrs apart from each other.

They are also expecting her to stay intubated at least until the Plasma Exchange cycles are done, which will be at least through Wednesday of next week - this was very hard to hear. 

 

We continue to be absolutely HEARTBROKEN for our baby girl and PLEAD before our father in heaven for miraculous healing and for wisdom for the doctors and staff here. 

 

On a positive note - Ryder had his 1 month appt today and is doing absolutely fantastic! 12.5lb and just killing it...the pediatrician told Darienne that he looked like a 3 month old, not a 1 month old lol.

 

Yet in some more sad news, Louie went to the doctor tonight & has pink eye. :(  It’s so hard to not be with him all the time, but we are so thankful that we know he is being loved on by his cousins, aunties, & uncles.

 

Even with all of this, we know God is good and in control. We praise him in this storm for the good and the bad. Our hope is not in shakable things but that of God’s unshakable plan, love and provision.  We know that while we would have NEVER chosen this for our family or our precious girl, he is working in mighty ways that we haven’t even seen yet.  

 

We’ve put a couple things on the site in the support section which we’ll update as well as we’ve continued to get news that our stay will be extending.

 

Some specific things to be praying for:

• Pray that the placing of the new lines and the treatments would all go without complications and would remain sterile so she doesn’t get any more infections.
• Pray that the treatments are effective and work quickly 
• Pray that she heals quickly and FULLY as they have mentioned the possibility of long term or even permanent mobility limitations, pain, or discomfort particularly in her legs. 
• Pray for Louie's eye to clear up quickly and no one else around him to get it as well.
• Pray Ryder stays healthy around the hospital and that he’d keep eating like a champ.
• Pray for peace and wisdom for us as we continue to navigate treatment decisions and ”lifestyle” decisions while in the hospital.

 

Love to all and thank you for continuing to pray with us & for us.

 

Aaron, Darienne, Louie, Payton, & Ryder. 

 

Payton Marie Update | 7/20/25

“For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, “Abba! Father!” The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him. For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”

Romans 8:15-18 ESV

 

God we trust in your promises to us. We trust that you are LORD of every situation and trust that you are in Payton's hospital room and that you are at work. Father give us the right perspective of our sufferings and of your glory. We are your children and we trust the plans you have for us and for Payton. Give us peace and give us eyes to see your glory amidst our struggles. Hold Payton's body and knit her back together from the inside.

 

It has been a rough couple days. Payton has come down with a lung infection, been swabbed and detected positive for MRSA, and we discovered a foreign body in her nose & mouth. She’s had a fever and we have witnessed her just feeling absolutely pitiful and miserable. She doesn’t tolerate having her hand held or her hair stroked anymore as she is experiencing nerve pain like pins and needles. She had to get a Foley catheter put in and has not had a bowel movement since before we were admitted. She is on two different rounds of antibiotics and we have an outstanding urine and blood culture.

 

Our baby girl needs some miraculous healing to happen. Please pray with us for this. Pray for peace and pray for patience as we let her body work. Pray that we absolutely do not decline any further and that we get some answers and sound plans moving forward. Give the medical team wisdom and continuity of a care plan for Payton. Pray for a miracle.

 

Love to all,

Aaron, Darienne, Louie, Payton, & Ryder

Payton Marie Update | 7/19/25

Today has been a doozy & Payton needs some serious prayer. 

Payton’s lung culture came back positive for a bacterial infection so they started her on amoxicillin earlier today. 

She now has a fever of 101.

Please pray for this poor girl of ours who is just really going through it right now. 

Payton Marie Update | 7/18/25

Updates for today, we keep seeming to get pieces of the picture one day at a time. GBS as a whole has an acute phase of about 2 weeks where they would typically expect decline. The IVIG that she’s gotten acts as a “booster” of sorts to help slow or hopefully stop the decline but, as with any booster, isn’t a guarantee of effectiveness or how effective it will turn out to be. Neuro has said they’d describe her as in a “sub-acute” phase. She doesn’t seem to be declining but also not yet to a point of recovery. 

 

We got a more thorough walkthrough of GBS today from the Neuro team. GBS attacks the fatty lining around the nerves which helps our nerves to respond so quickly to input. The lack of that is what causes her inability to move, droopy eyes, difficulty with swallowing, etc. It is also a very slow repair process. They’d expect her to stay in the PICU until mid-late next week and then move to the main pediatric floor or neurology floor for a few more weeks after that until her eating is back at a comfortable level. Beyond that potentially several months or even up to a year before she is entirely back to her baseline before any of this occurred. They have said it is a very very small number of GBS patients do not recover fully.

 

Given that, the expectation is unless they were to start to see some major improvements in her head, neck, throat, eyes she will stay intubated with more serious reevaluation done at some point next week for whether/when they want to try to extubate again. The one silver lining to that cloud is they are going to try and move us to a private room instead of the quad we have been in. Payton does seem to at least be stable and very mildly sedated, so she chills out and gets to watch lots of movies. She stays nice and comfy most of the time, doesn’t like when everyone comes in and bothers her. She was thrilled when her Ne’ showed up last night and sat with her for a while. 

 

She sees OT each weekday now and they just help to reposition her and have started early steps of therapy to keep mobility and maintain some sort of weight bearing on her hips and feet etc since she’s still just in bed all the time. 

 

Not much other than that, our prayer request stays the same, that we would start to see some real signs of recovery. Any next steps of treatment would occur late next week if they really don’t see improvement and we really don’t want to get there with no improvement.

 

Love to all,

Aaron, Darienne, Louie, Payton & Ryder

Payton Marie Update | 7/17/25

First off, I am overwhelmed with thanksgiving for all the love and support we feel from you all. They say it takes a village to raise a child and Payton seems to be proving that maybe it takes something a little larger even. We are so grateful for the prayers the extensions of help and support and all the love. Thank  you!

 

Payton is still on the ventilator and they anticipate her to stay on for a couple days to let the GBS process through a little more and let her start recovering. To help with that they started NG feeds through her nose last night and will keep those going until they need a pause to extubate, again in a day or two hopefully. They also will be working with her sedation and ventilator to help her be more awake and alert both to help her exercise her lungs and be more aware for evaluations as that will help them to determine when next steps will be best to take. 

 

Continue to pray that she would begin to recover as she’s seemed very stagnant or even to be in decline still. They’ve assured us this is par for the course with GBS. 

 

• Pray she is able to particularly regain strength in her throat as that’s needed for when they try to extubate again. 
• For the rest of us just pray that peace would abound. We know God is in control and I believe God has mighty plans for our sweet baby girl that satan just really isn’t happy about. 
• Pray for peace for Louie and that he would keep just having so much fun with his Uncle, Auntie and cousins, 
• Pray for peace for Darienne and myself that through each step we would continue to be resting in Christ. 

Payton Marie Update: 7/16/2025 #2

My oh my how quickly things change here.

Payton was having some desaturations & was holding more CO2 in than they like, so they switched her to a bipap (literally looks like a snorkeling mask that covers her whole face)

Even with the adjustment, she was still having some issues & there was concern of a collapsed lung, so they decided they needed to intubate her again & turn the sedation back on.

As they were making the decision, things started declining pretty quick, so our room was swarmed with nurses & all the people.

They successfully intubated her on the first try which was really good & she eventually came back up. They confirmed via xray that both lungs had partially collapsed but thankfully when they were bagging her they re-inflated.

She is doing better now thankfully. The doctor said unfortunately the GBS had moved to her lungs causing weakening, which we could only find out by trialing her off the ventilator. They are planning to keeo her intubated & sedated until at least Friday, as they believe her GBS is still in the declining phase.

Payton Marie Update: 7/16/2025 #1

Hey All, 

 

Wanted to update you on Payton Marie’s latest adventure!

 

Everything started Monday with a fairly normal morning. She woke up fine and played as always. Darienne noticed a slight droopiness of her left eye but really just looking a little extra tired. She randomly choked briefly on her PB&J for lunch but was then still fine and totally normal. 

 

She went down for nap as usual and then when Darienne got her up at around 5pm she was totally different. Both eyes were very droopy, wouldn’t open more than about halfway. She also wouldn’t/couldn’t put any weight on her legs and was just overall, unstable and out of it. Darienne immediately called the pediatrician who told her to call 911. We opted to go to the ER together so I rushed home from work and we took her to AAMC arriving around 7pm. Thankfully they were not busy at all and so they were able to see her right away. They ran a full tox screen, blood panel, urine and did a head CT. Everything was normal and so the ER doctor at AAMC called the Neurology Attending at Children’s National who also seemed puzzled and ultimately decided we needed to be transported to  Children’s National in DC so they could evaluate her.

 

Around 11pm they transported Payton and I via ambulance to their ER where they evaluated further and walked through all the symptoms and continued deterioration of her legs and eyes. By this point her eyes would only open about ¼ of the way, to look up, she had to move her whole head back, which if not supported would then cause her to topple backwards. In Neurologies evaluations her legs were completely unresponsive to the reflex tests, her arms also not overly responsive either. 

 

They determined the best course of action would be to admit her to the PICU here at Children’s and that she needed a full MRI of her brain and spine, with and without contrast, as well as a Lumbar Puncture (Spinal Tap) to run tests on her spinal fluid. In order to safely do the MRI they also determined in her weakened state she would need to be sedated and have a breathing tube placed. This process all started about 12pm on Tuesday, she went in for the MRI about 2:15pm, and had the LP done around 8:30pm. All procedures went smoothly and helped to determine that they believe she has GBS, or Guillane-Barrè Syndrome. This essentially means that after a viral infection, which she had last week, her body mistakenly decided to start attacking her nervous system. This showed in an inflamed vertebrae and Cranial nerve in the MRI. The Spinal tap has helped to rule out any other types of infections or diseases that would have the potential to cause similar systems. Still waiting on final results from the CSF, spinal fluid tests, but everything thus far is clear. 

 

The course of treatment is two rounds of IVIG, Intravenous Immunoglobulin, which acts as a booster to help her get through the sickness. This started around 12am Wednesday with the second dose to be given around the same time Thursday. 

 

Big step for today was to get her extubated and turn off the sedation, with the concern being that she could have deteriorated further to start having breathing issues causing her not to tolerate breathing on her own like she was before. She handled this like a champ and was successfully extubated around 2pm today.  They also turned off her sedation around 1pm today.

 

Next step now is drinking and eating as the assumption is that her choking on Monday was actually related to the weakening of her throat due to the GBS, so they also have an NG tube (feeding tube) placed through her nose to her stomach in case she doesn’t tolerate feeding from the beginning/very quickly. After she shows she is stable and shows signs of improvement then she will get moved to the main floor of Children’s, likely come this weekend. Beyond that they will make sure she can sustainably eat as before and may work with OT and PT to determine next steps. 

 

They originally told us to expect a 5-7 day hospital stay, but then the neurologist told us today to expect a few weeks in the hospital to recover to the point of discharge and then to expect a few to several months before she can totally walk as before because of the nerve damage associated with GBS.

 

Please pray that she would recover quickly and that overall it would be a simple and quick process to get home and then quick progress thereafter too. 

 

More updates to come as things happen!

Update: 7/11/23

• 1 0 0   D A Y S •

Today officially marks 100 days that this peanut has been in the hospital. & that honestly feels surreal to say.

Yesterday, Payton handled her first round of oxygen weaning like a CHAMP! Thank you for all of your prayers & encouraging messages! 

Today, we hope to *maybe* try weaning off oxygen completely! Prayers for that would be much appreciated!!

The doctors keep telling me that we are SO close to going home, but then rattle off the list of what they want to see before we can actually go home. It seems the biggest one, is that her weight gain would increase to over 20 grams per day (She has been sitting at about 15 grams the last couple days).

So, for now we celebrate that this girl is 100 days old & we thank the Lord for watching over her every single one of those 100 days!

Love, Darienne, Aaron, Louie, & Payton

Update: 7/10/23

Payton Marie update with a praise & prayer request!

P R A I S E : this girl has been 100% PO feeding (taking everything by mouth via a bottle or breastfeeding) since 9am on Thursday!!! This is a HUGE step to getting us home!

P R A Y E R R E Q U E S T : since she is doing so well with feeds, they decided to try to start weaning her oxygen today! So as of 10:45am this morning, they have cut her oxygen level in half to see how she will tolerate it. PLEASE pray that she tolerates this well as we really don’t want to go home on oxygen if at all possible!!

Thank you for keeping our family in your prayers, especially for keeping Payton lifted up!

Love, Darienne, Aaron, Louie & Payton

Update: 7/2/23

• T H R E E M O N T H S •

Our favorite girl is 3 months old today! This girl is such a little fighter & we are so thankful she is HERE & she is OURS!

If you told me at any point in my life that I would have a baby that stayed in the hospital for over 3 months, I would have never believed you! Yet here we are. We are tired, we are weary, we are fighting, but most of all, we are BLESSED.

Payton has taken a few steps back in her bottle feeding journey over the last week or so which has been incredibly difficult. The doctors finally agreed to try a few different things to hopefully get her progressing forward again, so please please please pray that we will be able to get this girl drinking her bottles well again S O O N !

I am truly so thankful that she has always nursed so so well, I have loved every second I get to nurse her & look forward to the day (in many months) that we can exclusively nurse!!

We are so thankful to our army of support that has helped with our Louie boy so that I can spend time at the hospital, advocating for this girlie. & I am SO glad Payton finally got to meet some more special people this week!!

Specific Prayer Requests:

1. Payton would start finishing her bottles & that they could increase how many bottles she gets per day.

2. Payton would gain weight - this has been a constant battle with making sure she is gaining the “goal” each day.

3. Payton would be able to start getting weaned off of oxygen support! They have tried a few times & she does not tolerate it at this point.

4. Mama wouldn’t lose her cool on a doctor while trying to talk through Payton’s care plan. I will never stop showing up & advocating for my baby girl.

Love, Darienne, Aaron, Louie & Payton

Update: 6/26/23

Hello All,

Another update from our little family about Baby Payton.

We were transferred to Mount Washington Pediatric Hospital which is a step down hospital that specializes a bit more in what Payton currently needs. She is still on a low flow cannula for her oxygen support but is down to 0.5 L of pressure. They will try to slowly ween her down to no support over our stay at Mount Washington. She has had several bottles a few of which contained her whole feed for that given time. She has also improved a lot on her breastfeeding which makes for 1 happy mama! The goal being that she needs to get all of her calories through normal feeding of bottle or of breast milk. Just a couple days ago she weighed in at 6lb 2oz!! She’s got so many little rolls! Such a big change from the tiny little peanut that came out almost 3 months ago. 

We still rotate spending nights at the hospital, Mount Washington is slightly looser on their visitation so some more of our immediate family is able to visit and meet Payton. This included Louie!! We were able to be all together for the first time as a family of four on Fathers day! It was such a special day for all of us and Louie was so excited to finally meet her through more than FaceTime. 

Please pray that we would make it home all together soon. They gave us an initial estimate that we could be here until late July. Our time frame just seems to be pushed further and further back and we are certainly getting worn out. 

Please pray that Payton would continue to grow and develop so that she can come off of oxygen support and continue to get more and more of her food through normal feedings. 

Love to all,

Aaron, Darienne, Louie & Payton

Updates: 6/10/23

Hey Everyone,

Sorry that it’s been a little longer between updates. We’ve had some busy weeks. Thank you for your continues prayers especially surrounding the things Darienne has shared on Facebook early this week.

Payton is doing absolutely amazing. She is 5lb 2.9oz as of last night! That means she’s over 3 times her original birth weight.

She has made it down to a low flow cannula which is the last device before she could be support free for her breathing! She is on 1 liter of pressure and they have tried 0.5 L twice but she hasn’t tolerated it great so far so they will continue to try that periodically to keep getting her down on her support.

She has had several very successful breastfeeding sessions with Mama and actually greatly prefers Mama to the bottles they try to give her. They discovered that she doesn’t like the taste of the fortified milk, Darienne’s milk with added calories, so she actually took a bottle much better when they didn’t mix that into it. They will have to slowly transition that in order to make sure she still gets all the calories she needs to keep growing.

The conversations about transfers has also continued. She has been very stable and the primary help she needs at this point is working on getting her to eat all of her calories rather than them going through her NG tube. We will most likely be headed to Mt. Washington hospital in Largo which is a step down care facility that has staff that is a lot more specialized in that transition and has the time and capabilities to get Payton where she needs to be with that. Please pray as we continue to discuss that transition and will have to get accustomed to a whole new drive, environment, staff etc. please also pray for emotional stability as it will also be a hard transition going from Paytons home for the last two + months and still not being able to take her home but having to go somewhere else.

Payton does have two inguinal hernias that will need to be repaired before she comes all the way home. At this point with her oxygen needs, they don’t want to do that surgery until she has weaned a little more from oxygen. So they will likely transfer us to Mt. Washington and then when they feel it’s appropriate, we will head back to John’s Hopkins for 24-48 hrs to have the surgery, and then head back.

We continue to be in awe of our amazing and unstoppable God. Two stories from this past week. First on Sunday night we were old she could finally get her MRI. This was scheduled for the Tuesday before. This was quite a process as she had to hold still enough for about 45 minutes for them to get through the whole thing. If you know Louie, when I say she takes after her brother you’ll know what I mean. She doesn’t stop moving. They ended up having to sedate her which still didn’t kick in for another 15 minutes into the redo of the scans. The end result of this, however, is that they see absolutely no white matter injury in her brain anymore. It’s just gone. No real explanation….other than our unstoppable God provided yet another miracle for our baby girl.

Second, If you didn’t see Darienne’s Facebook early this week Payton had her hearing tested. It’s a series of probes and devices hooked up that test each ear and her right ear passed and the left failed miserably. This was a very unexpected result and something that had never even crossed our minds of something that could be wrong. They told us they would retest the next day and almost immediately her left ear passed!! Shortly after her right ear also passed. Just another amazing testimony of Paytons life and God’s continual mercy towards us!

I have two songs to share with you this week. One is brand new from Brandon Lake called, “Praise Him Anywhere” https://open.spotify.com/track/6PR1HxI09SL1O2itnjBW12?si=R-pEhuuBTkyBqnPHvBMwFA

The other is by Sanctus Real and called, “Unstoppable God” https://open.spotify.com/track/5bZQwgrDwYHE1aWWTrjBdD?si=

We have seen time and time again that our God is truly unstoppable as we were told three times that Payton wouldn’t make it, a handful of times that if she did who knows what kind of disability she could struggle with and then time after time again injuries or issues pop up and then are wiped away clean for our perfect amazing little Payton. He is worthy of all of our praises!!

Thank you for your prayers surrounding us and sweet Payton as well as praising God with us for all of his wonderful works for Payton.

Love to All,

Aaron, Darienne, Louie & Payton

Update: 5/29/23

Hey Everyone!

It’s been a busy week!

We had Louie’s birthday party and my graduation party jointly last Sunday and his birthday on Thursday as well as my graduation on Wednesday.

Little miss Payton has been doing well. It’s crazy to think that she is 8 weeks old already, yet Louie has never met her in person! She has been gaining weight a little intermittently and has been increasing on feeds, calories in her feeds and compressing the amount of time she feeds. She gets her whole 35mL feed in 30 minutes now and weighs in at a whopping 4lb 2oz! 4lb 8oz is our first qualifier to hit for going home. There’s LOTS of others, like decreasing oxygen support, and feedings all by mouth, but that is one huge step!

On Friday Payton also got to nurse with Mama for the first time!! An incredible experience for the both of them and so looking forward to doing more.

On a less exciting note, however, over the weekend they bumped Payton back up to 3L of pressure on her high flow cannula. They are more routinely giving her suppositories to help her poop more consistently as she was showing some signs of discomfort due to an overly full belly and trying to push so much. They primarily increased the oxygen support to help her not work so hard to breathe. They suspect she was using up her calories working to do that rather than using her calories to grow and gain weight.

She’s still our little champion rockstar! Louie gets so excited to FaceTime with her and doesn’t want to look at anyone else except his baby when he can tell were at the hospital with her. He is living his best little 2 year old life! So crazy that he’s already 2!

Darienne is doing well too. We’re all worn out and her schedule is kind of crazy because she tried to stay on track pumping every 3 hours to match up Payton getting her feeds every 3 hours so when she can nurse consistently it’ll be a smooth transition.

I am so excited and relieved to be done with school. This week, while busy, has been a big relief to not have to think or worry about school assignments etc. that might need to be done.

We are all continually resting and hoping in Christs provision for our little baby girl. He has brought us this far and won’t stop now. He is our firm foundation, the rock on which we stand. He hasn’t yet and he won’t ever fail us. https://open.spotify.com/track/4iaas0o0bFzalTLwhQTuBH?si=ybALNCULRaa1cvxzCaFy3A&context=spotify%3Asearch%3Afirm%2Bfound

Thank you to everyone for your continued prayers, love, words of encouragement and support. We truly could not have gotten this far with our sanity without each of you being the hands and feet of Jesus to us.

Our biggest prayer requests now are that Payton would be able to keep coming down off of oxygen support. At 3L of pressure she isn’t allowed to breast feed and even at 2L it’s just a careful process. She does also have a couple hernias, 1 of which they have told us will need repaired before she leaves. So we pray for the doctors and for Payton surrounding that surgery in the coming weeks. We also pray that she would keep gaining weight and that as she is able to nurse it would just work wonders for her and her little body.

Thank you all again. Love to everyone supporting and praying with us.

Aaron, Darienne, Louie & Baby Payton’s

Update: 5/20/23

Hey Everyone,

We have 2 big updates for today. Yesterday Payton got moved out of her isolette and moved into a mini crib! It is so sweet and joy bringing to have such easy access to interact with her and see her now.

She also got to try nursing for the first time! They weren’t expecting her to do anything at all as this was her first ever attempt, but she latched really quick!!!! All of the nurses in the room were super impressed with her and I know that was so special for Darienne!  Please pray specifically that they will be able to get nursing like a pro soon!

All of the other steps we’ve taken have gone smoothly. She is handing the compressed 1.5 hour feeds fantastically and is also doing so well on the 2L of pressure for her high flow cannula.

In other news Payton is weighing in at… drum roll… 3lb 10.2oz as of about 9:30pm this evening! She is looking fantastic and feels SO much bigger to hold. She’s still our little peanut but it is truly incredible how God has cared for our baby through the Johns Hopkins staff.

I’ll leave you with these two thoughts. My mother shared with me Psalm 121:2, “My help comes from the Lord, Maker of heaven and earth.” Our help and Paytons help comes from the maker of the heavens and the earth. How incredible is that!? Even better than Johns Hopkins.

Second is this song, Worthy of My Song by Phil Wickham. Through every step of the journey we have been on, God is worthy of our song and our praise. He is in control and is sovereign and all of this will work out for His glory. He is worthy.

Love to All,

Aaron, Darienne, Louie & Payton

Update: 5/18/23

Good Evening,

We are fully past the events of last week. We never really got a real answer as to what caused her worsened condition, but we are so thankful that it is behind us.

This past week has not been without its challenges. Payton started having elevated blood pressures compared to her normal on Sunday. Monday they persisted so they started to look into it more. They ran a couple of tests and did some scans. All of that came back normal/reassuring. They are still keeping a close watch on it but they seem to be a little lower and stable for now.

Our big news for this week is that we have made a lot of progress on her oxygen support! She had moved to 3L of pressure on her high flow cannula on Tuesday. Today, Thursday, we moved down to 2L of pressure on her cannula. She has been doing great on this so far and the next step down lets us go to a normal smaller cannula.

Her once continuous feeds that had compressed down too 2.5 hours given every 3 hours is now down to 1.5 hours given every 3 hours! Her glucose levels have been stable at this new schedule so far as well and we are super excited for that. As of tonight she is also 3.25lb!!

Her white matter injury in her head has also shown signs of a little more improvement. She will likely have an MRI next week to get a better look at how it is doing and then discuss any potential implications if there are any. She’s also had another physical therapy visit where they watch and help her move in certain ways and she’s passed those evaluations with flying colors! If you have met Louie then that should not come as a surprise to anyone that she’s moving a lot!

Speaking of Louie, he’s been his normal crazy self. He loves his puppies at home, sometimes he seems more excited for them than anyone else. He gets to play a lot with his cousins on Darienne’s side and got a fun play day with his cousins on my side this week too. He turns 2 next Thursday, which is just crazy to think about and we are so excited to celebrate and yet also a little sad that we won’t yet be together as a WHOLE family.

Darienne is chugging along as any supermom would. She never stops and just about never complains or says a negative word. While its crazy and exhausting she is in a world of her own where she is focused on one thing and that’s taking care of her babies. I am truly so incredibly thankful and blessed to have her as my beloved wife and so incredibly grateful that our kids have her as their mama.

I am also chugging along, I have just finished and passed my final class for my MBA. I graduate next Wednesday the 24th. I am showing more signs of wear than Darienne is, though she’s still doing more work and sleeping less than I am. I am overwhelmed with emotions at times due to the way I have seen God bless our little family through this time. While always concerned and worried about how this all may affect Louie I don’t think I have ever felt so clearly how I imagine God feels about us. Going through this, I dread the day that I have to watch Louie go through his own storms in life but I also look forward so much to see him walk through them triumphant.

I had the pleasure of going to one of my best friends weddings this past weekend. As I watched his brides father daughter dance I sat in awe. I could not even begin to fathom my tiny little baby continue to grow and watch as an incredibly strong little girl turns into a strong young woman and beyond that not being able to imagine that one day I’d let anyone else ever take care of her or call her his.

After all of that I will leave you with a verse. 2 Chronicles 20:12 - “O our God, will you not execute judgment on them? For we are powerless against this great horde that is coming against us. We do not know what to do, but our eyes are on you.””

‭‭2 Chronicles‬ ‭20‬:‭12‬ ‭ESV‬‬

Love to All,

Aaron, Darienne, Louie & Payton

Update: 5/12/23

Hey All,

Small update from today. Payton is doing much better than she was. They have resumed her feeds and she is officially 3lb's!!! She is still on increased pressure in her cannula to help her O2 levels. Please pray that she could come back down soon.

The doctors are still not sure of the cause of what was going on and are still waiting on a couple more tests so please continue to be in prayer about that.

Payton also had a visit from the nuerologist today who observed some of her movements and discussed the white matter injury issue they had been seeing in her head ultrasounds. It had shown slight improvement but based on some of the movements and that it is still there they are showing some concern about that injury. They have told us already that even after she gets released we'll almost definitely have some follow up appointments with the nuerology team at Hopkins to make sure she is developing appropriately and if they see signs they don't like they can intervene early on. We have no clue what or even if there could be any long term effects of this but please keep this overall situation in your prayers as well.

We are so thankful for the burst of encouragement, support and prayer as we hit this bump in the road. 

Love to all!

Aaron, Darienne, Louie & Payton

Update: 5/11/23

Hello Dear Friends,

Please be praying for Payton. She hasn’t been doing great for the past 2 days & this afternoon pretty quickly declined further.

They have had to pretty significantly increase her oxygen support as her lungs aren’t doing well.

They are also suspecting she may have an infection. Today they did an echo of her heart, X-rays of her chest & abdomen, just finished every lab in the books, & have a catheter in so they can run urine. She is being started on antibiotics immediately because it is a pretty high suspicion of infection, but need to narrow down what kind.

She has been poked & prodded more in the last 24 hrs than in the last like 3 weeks alone. She’s had 3 different IVs placed which all took 2-4 sticks to place & had an arterial line stick (straight into an artery).

Shes been through a lot & if she does have an infection, it’s a big deal in the NICU.

Please pray for our baby girl.

Aaron, Darienne & Louie 

 

Update: 5/7/23

Hey Everyone!

Some big news this week for our little Payton!

First, she has come off of the cpap machine! She is on a high flow cannula, aka the kind of normal tube that passes by your nose. She has been doing great on it so far and its so great to be able to see her sweet little face and head not covered up with the hat and mask that she used to have to wear all the time.  They started her cannula at “4L” of pressure and they have already brought the pressure level down on the high flow cannula to “3L” of pressure. If she can come down to 2L then she can go to a normal cannula which is yet again smaller, less intrusive and more comfortable for our little Payton. Being off the cpap and on the high flow cannula is already a huge improvement for her comfort level so getting to a regular smaller cannula would just be even better.

In addition to the oxygen support improvements she has been regulating her temperature much better on her own so they’ve let us start bringing little clothes for her to wear! She’s still so tiny and tiny preemie clothes seem big and baggy on her but it’s still so sweet to have something “normal” for our sweet girl.

Our last big test also came back that takes a closer look at any potential smaller genetic abnormalities  and it came back completely normal. This is yet another huge answer to prayer as it eliminates the possibility of a lot of complications that could have popped up. She has also gotten her first vaccine! She got the hepatitis b vaccine on Saturday and is being monitored closely for any side affects especially with how little and fragile she is but it’s still important for her to get it to protect her from anything worse.

Her glucose has also been much improved. They’ve taken her just a step down from a continuous feed and she gets 36mL over 3.5hrs and is off for 30 minutes and then starts her next feed. They had tried to go down to this earlier on in trying to figure out the glucose issue and she didn’t tolerate it well. She’s done great so far and are planning to compress (shorten) her feed times more on Monday.

God has been so faithful and gracious to us and our little family through this crazy time. We have surrendered control to Him and are just along for the ride wherever he takes us and little Payton.

In other news, I think we are all getting worn out. It’s been a long journey already and like I just said we are truly relying on God to carry us through! Louie is growing up so fast and is simultaneously having so much fun in all of the different things he’s getting to do but we can also see his little emotions taking over a little as he is almost 2 and is getting worn out too. We did get to go do some park hopping on Saturday in Bowie. We went to 3 different very fun parks that were all like 3 minutes from each other!

Thank you all for your prayers, words of encouragement, texts, emails, etc. they mean the world to us as we walk through each day.

Love to all,

Aaron, Darienne, Louie, & Payton

Update: 4/28/23

Hey Everyone!

LOTS happened this week for our little Payton. First off as of today she is 2lb 8.6oz! This is huge! She has been gaining pretty close to an ounce per day for the last couple days which the doctors are very happy with. Her glucose levels have been fluctuating a lot and dipping rather low which they expect to a certain extent but want to narrow down why it may be happening. She will likely end up with some extra labs done soon to look at some hormonal levels that may give some information on the glucose issue.  She is on a continuous feed for now that gives her 8mL an hour 24/7. This should help keep her levels where they should be. Please be praying that this would level out or the doctors would be able to quickly pinpoint the issue!

Our biggest news of the weeks is that we got Paytons genetic testing back. If you recall or look back to some of our earliest updates Dariennes/Paytons placenta was determined to have “mosaic trisomies 16”. Meaning some cells in the placenta had an extra copy of the 16th chromosome. This is largely what caused Payton to be so growth restricted, to have all of the blood flow issues, & ultimately caused Darienne to have preeclampsia.  They did a diagnostic test on Payton after taking some blood several weeks ago because they weren’t sure if she also had the Mosaic Trisomy 16 or not and Payton has come back completely normal as far as her chromosome counts go! This confirms she doesn’t have any Mosaic Trisomy 16! This is a huge praise as the complications of any of the chromosomal abnormalities could be vast and unknown. We thank God for this amazing news!

How crazy that this baby girl of ours is doing SO well, after we were told by more than one doctor, that she wasn’t going to make it?! We were asked repeatedly if we wanted to terminate the pregnancy, even at 24+ weeks, because her diagnosis was so grim. She truly is our little miracle in more ways than one & we thank the Lord for continuing to provide for us & keep her safe!

Payton has also gotten to be snuggled a lot more in the past week. Rene has gotten to hold her swaddled a couple times, I got to do skin to skin with her for the 2nd time and held her in my hands for a little while they changed her sheets. Darienne is also getting regular skin to skin time. Mike has also gotten to hold her while nurses change sheets as well. She is getting a lot better at managing her own temperature. They keep her isolette around 30 degrees celsius and we just need to get down to 27 degrees before she can start wearing some cute LITTLE outfits. Her oxygen support has also come down a little. Early on she was on a cpap of 5 and then last week she went back to a level 6 and now she is back to level 5 and doing great! The next step down would be moving to a high flow cannula.

Payton had her first eye exam this week & thankfully there are no signs of “disease”! They said her eyes are exactly as they expect they should be at her current gestational age! She will continue having eye exams every 2 weeks, until she “passes” her exams, closer to full term.

She will have her follow up head ultrasound on Tuesday & we are praying that the “white matter injury” will show signs of improvement from her last two ultrasounds.  If the “injury” doesn’t get better, they said this could cause some developmental delays as she gets older.

We are all exhausted but hanging in there. We are both still busy juggling all of the moving pieces that are going on in our crazy life. We ventured out together as a family to a lacrosse game for Louies big cousin, Alex. This weekend Louie is at a wedding with his Ne’ and Grandaddy in North Carolina. He is partying it up and representing the best part of our little family for some very special friends of the Edmonds family.

We continue to be thankful for all of your prayers and support. A few new specifics to pray for below:

• That Payton’s glucose levels would settle where they should be without intervention.
• That Payton would continue to have healthy eye exams.
• That Payton would have a good head ultrasound on Tuesday and that it would show signs of improvement of the white matter that has been there previously.
• That Payton continues to grow weight so well.
• That we all would get some rest and good sleep, but especially Darienne.
• That Louie would continue to be our amazingly strong sweet boy and that through all of this he would always know how important and loved he is even with so much going on.
• That we would continue to be able to navigate all of this with some “Simplicity” and that God would guide our steps all along the way.

Thank you and love to all,

Aaron, Dariennne, Louie, & Payton

Update: 4/23/23

Hello All,

Another update from us here in the NICU. This week has also had some ups and downs. We were told from the beginning that the first two weeks we should expect her weight to fluctuate. Apparently right after that two week mark if she loses any weight it’s fairly concerning to the doctors. Well, surprise, she had started losing weight. They had to do a few more X-Rays adjust her feed amount and the time frame it was given over and then they got her all sorted out.

Payton Marie was born at 1lb 9.4oz, at her smallest she was about 1lb 5oz and she officially made it to 2lb on Friday and tonight she is 2lb 3.3oz or exactly 1000g/1kg. Which means she gets her first “Grammy” from the nurses here at the hospital.

Darienne is doing well. She seems much more fully recovered and hasn’t had any weak spells recently. She is still exhausted and very busy pumping, sitting with Payton, trying to keep up with Louie and also helping keep life as organized as it can be right now.

I am busy with work, school, Louie and Darienne. I haven’t been able to be up at the hospital quite as much recently but Mike and Rene’ have been extra helpful in covering for me spending time and nights with her so Darienne and I can spend time together and with Louie.

Louie is his usual crazy self, he is feeling a little off recently due to what seems to be some back molars coming in. He is still so much fun and learning to say all kinds of new words and spend time with all kinds of new friends.

We also were able to have a fun weekend of celebrating! The baby shower for Payton was on Saturday and we celebrated some birthdays on Darienne’s side that we celebrated today. I got to go golfing and Darienne had lots of special family members that came in from out of town just to celebrate Payton with her/us. We feel much more prepared to be able to bring Payton home in the coming months after the shower and so recharged from being around so many that love us.

Thank you all for your prayers, we still very much need them! We need rest, energy, Payton to keep growing and Louie to stay happy and joyful. Please see our support page if you are looking for any addition areas of prayer or other ways to support us.

A few very specific prayer requests for Payton this week…

1. Gain & maintain weight! If she is losing weight, they are concerned.

2. Continue to decrease oxygen support needed. The last few days they have had to increase her oxygen support a few times, so we really need that to go back down.

3. Decrease in "events" whether that is heart rate dropping events or oxygen saturation decreasing, we want a decrease in total events!!

Love to all!

Aaron, Darienne, Louie & Payton

Update: 4/15/23

Hello All,

Another update here from the White Family. Payton is doing well, we have definitely taken what seems like a step backwards to us. Her oxygen support has had to come up over the last couple days, meaning the pressure on her cpap is higher to help force air into her lungs and keep reminding her to breathe as well as her oxygen percent has increased from the normal air we breathe to a higher concentration percentage. The doctors have all assured us these fluctuations are very normal and not concerning at all really but that can still be hard to take in.

She is completely unhooked from any IV’s! She still has all her monitors for heart rate, respiratory rate, oxygen levels and temperature but is receiving all of her nutrition through what are called trophic feeds of Darienne’s breast milk directly through a tube into her belly. She has also gained weight fantastically and is a whopping 1 pound 12.9 ounces which is above her birth weight of 1 lb 9.4oz.

Darienne is still recovering a little bit from the delivery and the magnesium etc. She does fine for the most part but has weak spells periodically. She spends the most nights up at the hospital with Payton.

I am doing well also. I have had my hands full of navigating my capstone course for graduating with my MBA in May, getting back to work this past week and also staying at the hospital a couple nights.

Louie is his “normal”, goofy, joyful little self. Whichever of us doesn’t spend the night at the hospital spends time with Louie and gets to put him to bed. He also gets to have all kinds of fun and adventure with my mom, Lois, Darienne’s mom, Rene, and his Auntie Kim. There have been several others who’ve spent some amazing time with him too but a special shoutout to these three for being willing to take on the load and help keep some consistent and familiar faces around our sweet boy.

Also a huge shoutout to Darienne’s parents, Mike & Rene’ for staying with Payton overnight at the hospital every few nights to give us a break & an opportunity to be all together at home for an evening or two a week!

We are all exhausted but are chugging along as we know that God has and will continue to provide for us all. Thank you for your prayers and continued love and support, you have truly been the hands and feet of Jesus to us in this very challenging time.

I Love to All,

Aaron, Darienne, Louie & Payton

He is risen! 4/9/23

We thank God this day for all he has blessed us with and most of all for his son sent for us to live for us and even more so to die for us that we might live!

Two songs that we have stood on this week are Sunday is Coming by Phil Wickham

https://open.spotify.com/track/08eMkrkp2sobR0zNs4kVtK?si=FX2xdisbR4mkyCmllOoWUg&dd=1

And Build a Boat by Colton Dixon

https://open.spotify.com/track/3Kh9eZaRwd1teXFVOZ9xPv?si=DjVvtobmRua0rhRNPFVbeQ&dd=1

Sunday is coming just tells the story of Easter and Good Friday in such a beautiful way. It depicts the Gospel and tells us why Friday is  good. It’s because Sunday is coming! This amazing news that He has made our relationship with Him right and that he is continually in the process of making all things new brings us great joy and peace.

Build a Boat paints the perfect picture of where Darienne and I are right now. Thankful for the work the Lord has done in our lives to “build our boats” of faith throughout our lives and walks with him; even in the desert or through periodic storms, but now we stand here in what seems like THE storm, waters rising and we praise God for not allowing us to drown. We ride the waves through ups and downs letting him lead us and provide for us. He has and will continue to sustain us through whatever comes next. I know His heart breaks for us and for little Payton as this wasn’t how he designed it all to be but he is still sovereign and I look forward to the testimony and lives that just might be changed because of the stories we will be able to tell.

God we love you, praise you and thank you for our many blessings even amidst trials. We know you are sovereign and that you’ve got LITTLE Payton in your hands.

Amen

 

We have both gotten the opportunity to do skin to skin with little Payton. It was truly a surreal feeling to hold one so tiny. She has remained off of the Bili lights for almost 2 days now! Her feeds have increased to 7mL every 3 hours! And she is currently surpassed her original birth weight! Please continue to pray for growth and weight gain. Pray for healthy heart, gastro and brain development and for her to continue to be an incredibly strong baby girl. She is the only one her size that is on as little oxygen support as she is.

Big shoutout to Mike Edmonds for spending the night with Payton last night and spending the majority of today with her so that Darienne and I could spend today with each other and with Louie! It was his first year really understanding Easter egg hunts and we had so much fun with both of our families!

Happy Easter! He is Risen! He has risen indeed! 

Love to all,

Aaron, Darienne, Louie & Payton

Update 4/7/23:

Updates on Payton from today:

1. Payton is off of the Bili lights for now!
2. Payton gained some weight! She was born at 1lb 9.4oz, got down to about 1lb 5.5oz and is back up to 1lb 6.9oz. Pray this just continues to rise as she grows!
3. They are giving her a blood transfusion to help get her red blood count where they need to be to make sure all of her gastrointestinal organs have all the blood they need to work properly as her milk intake increases.
4. We are up to 4mL every 3 hours! Still not much and it goes through a tube directly down to her little belly, but it’s very encouraging. Dariennes milk has also come in so we are ready for Payton to chow down!!
5. Mama & Payton will be doing skin to skin today around 5ish & she nervous but SO excited at the same time!!
6. Darienne also spent her first night at home since she was admitted on March 23rd. I stayed at the hospital to look after little Payton so she could get some good sleep. We are looking forward to Easter with Louie and so thankful for Christ grace for us in life and especially amidst these trials as we know without him our journey of ups and downs would have been unbearable and hopeless at times.

Update: 4/5/23

Little Update on Baby P: (From Darienne)

I got to hold her for the first time today! It was surreal. She is so so tiny. I don’t even think the word “Tiny” does her justice!

I was discharged today, so we are officially on to the next stage of this “journey” with her stuck there without me. 😭

Payton had an ultrasound of her heart, head, & belly in the last 24 hrs & her heart & belly are clear! No birth defects! We are still waiting on the results from her head.

She is also on one level less of oxygen support. She went a short period off of the Bili light and is back on again and had a picc line put in that starts at her calf and goes "all the way" a hole 6-7 inches up to some larger vessels for better support of her IV. 

Payton is a rock star & can’t wait to meet all of you! 💕

Mama also enjoyed seeing Louie and her puppies again as she got to come home for the first time in 2 weeks. We are back at the hospital for the night to spend time with Payton.

Love to All,

Aaron, Darienne, Louie, & Payton

 

Update: 4/4/23

Hello again,

First, we want to thank everyone for their continued prayers and words of encouragement. If you’d like to you can go to the last page of the website and share something on there for us to be able to consistently go back to and read. We would love for that to just be filled up.

Second, Darienne is doing very well. It turns out that delivering a 1lb 9oz baby is a little easier on you than an 8lb 13oz baby. She is still recovering though. Her blood pressure has come back down from the preeclampsia levels they were seeing and they are lessening her dose of medication for that. They were going to release her today but we opted to stay 1 more day both to make sure her blood pressure is good with the adjusted dose and so we have a little more time to figure out how we are going to balance being home with Louie and being at the NICU with Payton. Her pumping is going very well and we’re building up a good supply for when they start feeding. This whole thing is just a crazy situation that we are taking day by day.

Third, Payton is doing well, all of her nurses say that she’s a rockstar. She handled what they call “cares” super well, that’s when they come in and basically make her mad. They change her diaper, make sure she’s positioned all nice and comfy and suction her out from any drool or anything that’s building up. She has been on a Bili/UV light for a little over 24 hours at this point and her Bili levels are dropping so we will see how long that lasts. They will start with very tiny feeds today, about 1 mL every 4 hours or so. She is also on a bubbling cpap machine to help her breathe and help her lungs develop.

Her nurses last night decided they wanted to get “crafty” and made her some new fun things for her room! We are so incredibly thankful for the amazing doctors, nurses, & every other person that has helped us & looked after our baby girl.

Please continue praying for Payton as we know we have just begun this journey.

Love to all!

Aaron, Darienne, Louie & Payton

Update: 4/2/23

Payton Marie White was born at 5:48am on 4/2/23 weighing 1lb 9.4oz.

She was breathing mostly on her own with a little support/oxygen help.

The NICU has her now and we'll go to be with her in the next hour.

Update 2:

Payton and Darienne are both doing well.

we just all visited Payton in the NICU and she's all hooked up for monitoring and is so teeny tiny. 

Darienne is doing well and we are so grateful that she didn't have to have a c-section.

Pray for Payton just to grow big and stay safe and healthy.

Update: 4/1/23 Part B

We have been moved to the labor and delivery ward for Darienne to be induced and hopefully have a natural birth. If this puts too much stress in baby girl then they will move to do a c-section for delivery.

She will also be put back on the magnesium drip which is what made her feel absolutely terrible earlier this week but has health benefits for Darienne and the baby.

Please pray for a smooth delivery and that the NICU team will be well equipped to handle our tiny tiny baby girl. 

Update: 4/1/23

Another update on Baby girl and Darienne.

Darienne woke up around 4/4:30 AM with some kind of pain. Around 5:30 AM we called the nurse in to talk to her about it and immediately following the doctor was doing her rounds and stopped in as well. She ordered some bloodwork and an EKG. The EKG came back normal but the bloodwork indicated that her preeclampsia could be getting worse due to some levels associated with her liver having almost doubled.

They repeated labs around noon and the results showed about a doubling effect as well. They are doing a follow up ultrasound of her liver to make sure there is no other cause than the preeclampsia.

Assuming that it is normal they will go ahead and proceed to deliver. They will let Darienne attempt to deliver naturally and if the baby shows signs of distress they will move to a c-section.

Please pray for wisdom and clarity for the doctors and for safety for Darienne and our baby girl.

Update: 3/30/23

Hello Everyone,

We are now in a holding pattern. The blood flow doppler on Monday the 27th had shown about the same or slightly worse flow, or in technical terms an increase in absent flow. Later in the day on Monday, Darienne's blood pressure also started to rise. This lead the doctors to diagnose her with preeclampsia with severe features. She spent about 16 hours over in the labor & delivery ward on constant monitoring and on a magnesium drip to combat some possible effects of preeclampsia. That was a particularly miserable time for Darienne but we are thankful because it was originally supposed to be 24 hours rather than 16. She has since been moved back into the Ante-partum/Post-partum ward on the other side of the same floor where she has been since. I am back at work and we are still figuring out schedules. So far I have spent about 2 nights at the hospital for each night I've spent at "home".

I say "home" because Louie and I have essentially moved in with Darienne's parents for a while here. With Rene' helping with Louie so much and me still working and going to the hospital so much, this just made more sense to have as few moving pieces for Louie as possible. 

The main updates from this week are that Darienne is officially admitted at Hopkins until she delivers baby girl.  Between the concerns for the baby & the preeclampsia diagnosis for Darienne, they aren't comfortable with her going home.  She has also been adjusted to 3 times per week dopplers to check for blood flow to the baby.  Prior to Monday, 3/27, she was only getting dopplers once a week. 

Darienne is 28 weeks this week & they are hoping to get to 32 weeks before needing to deliver, but would be happy to at least make it to 30 weeks!

Update: 3/23/23

Hey All,

So, we are currently checked into John’s Hopkins Hospital. Baby girl is being monitored by non-stress test twice daily and by a Doppler for the blood flow to the placenta on Monday .

We had arranged an extra appointment today to check these same two tests earlier today before our planned vacation with the Edmonds/Huttons to St. Martin, leaving Saturday for a week. The non-stress test came back normal, but the Doppler of the blood flow which should be a continuous wave like picture, had points where it stops flowing which is not good. This is what has caused them to admit us to the hospital to be able to monitor more continuously. That being the NST twice daily and Doppler again Monday .

They also plan to administer some steroids to help baby girls lungs and other organs to hopefully develop and strengthen should she need to be delivered in the next couple weeks.

Please pray the NSTs would remain good and strong as that is our main indicator of how “happy” baby girl is on the inside. Also please pray for a miracle that the Doppler would show a return to a wave-like pattern of blood flow to the placenta and that it definitely would not start to go in reverse. We also pray that this baby would stay healthy and stay put inside for as long as she can!

We love you all and are so thankful for you all and your prayers. ❤️❤️

Love Aaron, Darienne, Louie & Baby Girl

Update: 3/9/23 John's Hopkins

Hey Fam,

Wanted to send along another update, but first we want to thank you all for praying for this baby girl of ours. This has been the craziest journey to say the least & we know it’s just begun. 

Also - apologies for the length again. All of this medical terminology, etc is hard to explain!!

On Monday, 3/6, we received a call that one of the blood tests from the placenta came back positive for Trisomy 16, which is a genetic abnormality. At this point, it is unknown if just the placenta has this, or both the baby & placenta have it. We’ve talked with the genetic counselor two different times this week & spoke with the doctor today.

Trisomy 16 is one of the most common reasons for miscarriage in the early 1st trimester (by 6-8 weeks). It is basically unheard of for a pregnancy to continue this long if the baby had full trisomy 16, along with the fact that they haven’t been able to find any birth defects. So they are thinking that the placenta has what’s called “mosaic” trisomy 16. Basically SOME but not ALL of the cells have the abnormality. Mosaic trisomy 16 is incredibly rare, so they can’t even give us much information about it or stats as to how babies with it typically progress. 

Needless to say, we are still navigating with a lot of unknowns! 

They have told us that the goal would be to make it to 35 weeks, which is the week of May 15th. They have said to prepare for a NICU stay due to her size & the potential of her also having the mosaic trisomy 16. 

The doctor said that we will hopefully have some better information after our appointment on the 20th as they will be better able to predict how she is/will do as they can compare two growth scans to get her growth curve. 

They have added an echocardiogram to our list of scans to be done on 3/20 to get a better view of heart & to try to get a better look at any defects now that we have this new diagnosis. 

We ask that you would join us in praying for a few specific things…

1. That this girl would G R O W
2. That the echo of her heart comes back totally normal & they don’t see any other defects on the other scans.
3. That her growth restriction would stay moderate & not progress to severe.
4. That we would have wisdom & clarity in navigating all of the appointments, notes, & results that keep coming. & that the rest of the results would be NEGATIVE.

We love you all & will continue updating as we find out more. I assume the next update will be sometime after our appointments on 3/20. 

 

Update: 3/1/23 1st Appointment at John's Hopkins Hospital

Hello! 

 

We wanted to send along all of the updates from today, but we were at Hopkins for over 6 hours, so it was a LOT. 

Here’s the gist!

- There were 3 original concerns that were raised on Monday: 

1. Skeletal Dysplasia: this paired with a clover shaped pattern of her head is what lead the doctors to be thinking and telling us to prepare for the worst case scenario. 

2. Genetic abnormality: This being Down syndrome or Trisomies 18 or something like that.

3. A growth restriction: something either genetic or in the placenta or xyz… is causing baby girl not to get the appropriate amount of support to grow properly.

Our appointment today gave us a lot of good answers with good news but also just more testing and monitoring needed. To address the above concerns here is a “summary” of the resolutions.

1. Skeletal Dysplasia: the doctors and scans did not see or show any signs of the clover shape that would be a worst case “symptom” of some of the 400 types of skeletal Dysplasia leading to a more than likely fatal end. Her “long bones” (arms, legs, hands, feet) are all still measuring short/small but that doesn’t directly relate to skeletal dysplasia. At this point they don’t directly expect skeletal dysplasia so it is on the back burner as something to keep in mind but not a big concern as of now.  If she does have skeletal dysplasia, they think it would be a mild form that could be confirmed in later ultrasounds or even a few years after birth. 

2. Genetic Abnormality: This would usually by paired with some type of defect either in the heart, digestive track, facial profile, etc. between not seeing any signs of any of these and a prior scan (NT scan) they are not particularly worried about this. The doctor also looked closely at her face & confirmed that the usual “signs” of Down’s syndrome are not present on baby girl.

3. A growth restriction: This seems like the primary focus for now unless something else displays itself. The other “major finding” of the ultrasounds is that her belly or abdomen is also measuring small. Her body being almost entirely proportional measuring a few weeks behind, except her head which is measuring about the right size for the due date of 6/20. This would all point towards a fetal growth restriction. So we are not out of the woods but definitely in a more peaceful place than before.  A big factor in the fetal growth restriction is that the placenta appears to not be fully functioning, therefore she’s not getting everything she needs. They noted that they are particularly watching the blood flow from her heart back in to the placenta as we are on the verge of it creating a bigger issue. So they will monitor this every couple weeks for now, but could end up weekly if it continues to decline. 

After these findings we had a lengthy discussion with a genetic specialist who walked us through all these findings and steps we’ve gone through again as well as our “options” going forward. We were given two main “paths” to go down to start. One being a blood draw and tests/diagnostics and the other being the amniocentesis that draws amniotic fluid and does diagnostics. Each give different sets of information with some overlap that just tells us different aspects of the possible genes, etc. that could be a cause of the growth restriction, any genetic abnormality, or anything else that could be going on. 

We opted to start with the blood draw as a less invasive procedure that can still give us lots of information and potentially point to whether the amniocentesis would provide more information if done after we get the results. 

We should get those results back in the next 2-3 weeks before we go back for a follow up growth scan, non-stress test, and doppler of the umbilical cord. Then if there are any findings from those then we can take next steps at that same visit, including the amniocentesis if we feel that’s needed.  At this point, we are staying at Hopkins for all tests/scans/monitoring as they are truly the best of the best & agreed that would be best for our baby.  They haven’t said we need to deliver there necessarily, unless she comes really early or stays really small. They are hoping we will be able to deliver as planned at AAMC because all continues to be good news at the coming appointments!

Please continue praying that our sweet baby girl would keep growing and even catch up to where would be “normal”.   They told us today she is 1 whole pound, so we definitely need her to keep growing before she can make her appearance! 

We will update again after our next appointment on Monday, March 20th!

Aaron, Darienne, Louie and Baby Girl

2/28/23 Thoughts and Prayers

Hello Dear Family, 

I just wanted to share with you some of my thoughts in light of “my little families” current situation.

First off, it is incredibly hard, difficult and scary as I am sure you might imagine. We feel as though we had been through enough with this pregnancy from the beginning being told that it did not seem like a viable pregnancy to Dariennes constant nausea and overall feeling under the weather. We simply just felt like it had been enough to bring us to our knees on more than one occasion already. 

Second, for those who aren’t inside my head and can read my every thought… I typically lean towards optimism. I don’t often see the need to get worried or upset about something until whatever it may be actually provides a concrete reason to be upset. (This is not always the most helpful for my pregnant wife…) Throughout each step of this journey my saying to Darienne has been, “It’s all going to be okay.” Or “It’s all right” and up until yesterday it has been. This left me especially shattered after yesterdays appointment. I never thought it would be me, “my little family” dealing with this kind of unknown and desperately tragic scenario.

What I still cling to though is this. It will, one day, be ALL RIGHT. When I say those words to Darienne, I mean so much more than just that it’s fine or it’ll be alright and to not worry. I truly mean that even if in this situation it doesn’t go how we want it to and pray that it will; in the end God, the almighty sovereign one, will make it ALL RIGHT. We will see, meet and play with our sweet baby Girl one way or another because God has already set in motion that ALL THINGS will be RIGHT one day.

Does this all of a sudden make everything easy? No, but it brings in just a little light of that peace that passes all understanding and it has taken root to guard my heart and my mind. 

One of my favorite songs is, “Even If” by Mercy Me. I wanted to put the lyrics in here for you to read. (Sometimes I like reading the lyrics along with a song while I listen because it makes it that much more impactful to really see and understand all that is being sung) 

They say sometimes you win some

Sometimes you lose some

And right now, right now I'm losing bad

I've stood on this stage night after night

Reminding the broken it'll be alright

But right now, oh right now I just can't

 

It's easy to sing

When there's nothing to bring me down

But what will I say

When I'm held to the flame

Like I am right now

 

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

 

They say it only takes a little faith

To move a mountain

Well good thing

A little faith is all I have, right now

But God, when You choose

To leave mountains unmovable

Oh give me the strength to be able to sing

It is well with my soul

 

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, and I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

 

You've been faithful, You've been good

All of my days

Jesus, I will cling to You

Come what may

'Cause I know You're able

I know You can

 

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

 

It is well with my soul

It is well, it is well with my soul

 

So that is my song and that is my prayer that I would be able to say that it is well with my soul through this crazy scary journey.

Your love and prayers are needed and asked for.

We love you all,

Aaron, Darienne, Louie & Baby Girl

 

Update: 2/27/23 Maternal Fetal Specialists from Anne Arundel Medical Center

We ask that you would be praying for our little family, but specifically for our sweet baby girl.

We learned today that she has Skeletal Dysplasia & potentially another genetic abnormality (like Down’s syndrome or something like that). There are over 400 different types of skeletal dysplasia ranging from manageable with medical intervention to fatal for the baby before she is born, or shortly after. The doctor today said that based on what she is seeing, she told us to prepare for a more extreme scenario.

We left the high risk doctor today, with a referral to the experts in Skeletal Dysplasia at John’s Hopkins - hoping to get us in by Thursday of this week. There they will do another round of scans & I will have an amniocentesis done to try to figure out exactly what the baby has, so that we can move forward with more concrete information.

While all of this is absolutely earth shattering for us, we are trusting that the Lord has our baby girl in his arms, no matter the end result.

We would also appreciate you all not sharing any of this outside of this group as we are still processing & wrapping our heads & hearts around everything.