Help Our Tiny Warrior Thrive

Raelynn Jade Koulik, my little miracle!

Only 26 weeks into my pregnancy, my beautiful daughter was born via emergency c-section on 12/20/24 at 1lb 4.5oz and 12.5inches long. With nothing short of a marathon ahead, any and all support, love, and prayers are so appreciated in this scary time. She’s a warrior, and I’m so proud of her!

The weight of the world seems to have fallen on my shoulders overnight being a newly single mom, still fully recovering from surgery myself, and now needing to face the soon-to-come medical bills from all this without insurance. My daughter’s health is the highest priority without a doubt, but the stress of wondering what life will look like for us when all the bills start showing up still lingers in the back of my mind, let alone the inevitable financial deficit that will need to be faced when I’m finally able to take an official maternity leave that we both deserve when she comes home. I’m self employed, and back to work part time to keep the bills paid, but balancing all that with a NICU baby isn’t for the weak.

You can read more current updates about our journey below:

1/17/25 update (1lb 12oz):

Raelynn had been doing exceptionally well for the first few weeks, growing out of her need for certain areas of support one by one, but remained on a feeding tube and cpap, as well as her monitors for vitals. The first day I was able to hold her was on 12/31, just in time to countdown to midnight with her in my arms. ❤️

Since then, she’s been treated for pneumonia and we’ve been watching a PDA in her heart closely with ongoing complications, but she hasn’t had any emergent episodes until she took a turn for the worst last night. While I was visiting, she had an extensive set of Bradycardia episodes much worse than any she’s had yet, and had to be resuscitated twice right in front of me. The first time was due to her throwing up and aspirating, and then the second from the struggle to get herself to stabilize thereafter. I can’t put into words the level of anxiety and worry I felt in that moment and the amount of love and respect I have for all of the angels in this NICU that helped ensure my sweet baby was okay!

This morning, she had another extreme episode and needed to be put back on a ventilator, and was taken off of my breastmilk and moved back to IV fluids, which unfortunately could slow her weight gain, and has been started on another round of antibiotics and steroids. Regarding the PDA in her heart causing most of this, medication was ineffective, so we’ve been doing what we can to help her gain weight, as she has several weeks worth of growing to do in order to be big enough to operate via catheter, otherwise her current weight would require traditional surgery and hence longer recovery time, more risks, etc. We’re not sure at the moment how long she’ll need this extra support and whether we’ll need to pull the plug on performing surgery or if we’ll be able to wait it out and just let her grow until our options open up for a less invasive procedure.

1/20/25 update (1lb 14.2oz):

Raelynn has been fairly stable since moving her back to the ventilator, but unfortunately has still been having some desat episodes on and off, indicating that her heart’s just under too much stress overcompensating for the PDA. The doctors are hopeful that they may still be able to do a catheter procedure even with her much smaller than we hoped for. Unfortunately the main path they would use for this isn’t an option as they found a flap in the wall of her artery that’s been scraped loose (potentially from an old catheter catching on its way out), so going in through a vein will be the only viable option, as going in that artery could be fatal. This injury was only caught because her blood pressure spiked and an ultrasound was done in searching for a potential blood clot.

We’re awaiting consult with the surgical team to evaluate and schedule her for whichever surgery they deem necessary, upon her successfully graduating to a traditional ventilator with steadier and slower breaths, as the oscillator she’s on vibrates her body entirely too much for such a precise procedure. Please keep praying for my baby’s health and safety!! This momma is losing it inside.

2/1/25 update (2lb 4.6oz):

We’ve been storming heaven with prayers, and this week the good Lord has delivered more than I ever could’ve asked of him. This past Monday morning, the doctor’s did another echo of Raelynn’s heart in preparation for surgery game-planning. We found that her heart’s PDA is finally closing on its own, voiding out the need for surgical intervention, and my heart is so so full! Since then, her breathing has vastly improved and we’ve been able to successfully move her back onto a CPAP. Currently she’s only at 21% oxygen (room air) which is an answered prayer in itself!! We should be working to wean her off of breathing support altogether in the coming few weeks. She’s also back up to full feeds of my breastmilk with added fortifier to help her gain weight! We still have a long road ahead, but Raelynn is fighting so hard, and I’m so proud!!

2/22/25 update (3lb 3.3oz):

We’ve been navigating an entirely new routine with all the big milestones Rae’s beginning to hit recently, and I haven’t gotten around to updating this page as timely as I would’ve liked. I apologize for the wait for those of you that have been reaching out! I appreciate all of the check-ins and support more than I can express!!

Raelynn has been gaining weight like a champ! Obviously she’s just over 3lbs now- thankfully, in this case, a bigger baby means a healthier baby, but I still don’t know who told her momma was ready for this! She went from a tiny frail little thing to a spunky sassy little baby, oh so quickly! It’s so bittersweet watching her grow up. Time goes by so quickly! I can’t believe my little girl is already two months old. I’ll be sure to include some updated pictures of our journey below!!

On 2/5, she had officially been weaned enough to be moved to a High Flow Nasal Cannula- what an amazing birthday surprise that was for her momma! On 2/6, we were officially upgraded to a new wing of the NICU, meaning she went from 1:1 or 1:2 (nurse:baby ratio) in her old unit, to 1:3 or 1:4, just depending on that day’s scheduling. In a nutshell, we’re now finally at a place where we can focus on her smaller, less prominent speed bumps with the main focus being on learning to just be a baby, while the past season was just merely survival.

On the afternoon of 2/10, Rae seemed ready to be off all breathing support, so her team made the decision to give it a try, but she got winded after about 4 hours with nothing and needed a little boost. She was put on a regular Nasal Cannula that only delivers a small amount of oxygen to her, almost “pointless” the doctors call it, as it’s such a small dosage, but Rae seems to be happy and has been adjusted here and there as necessary since. We had a false alarm a few days ago, thinking she was ready to be off completely- she’s not quite there yet, but SO close! Keep the prayers coming!!!

Also on 2/10, we finally began breastfeeding, although it’s still mostly been considered non nutritive, since she’s very much so still learning the ropes. She’ll remain on her feeding tube until she can successfully take her full feeds from a bottle/breast in the near future. We’re up to 27ml every 3hrs, which is just shy of an ounce. I made the commitment as of last Friday to start coming twice a day for a breastfeeding session- once in the morning and evening, so my schedule’s gotten even crazier with travel times and my work schedule, let alone spending double in gas, but it’s what my baby needs right now to learn at a pace she can handle. Unfortunately with how premature she still is, even the smallest action, such as learning to eat leaves her winded and falling asleep. As cute as it is, it’s such a real thing, and I’m doing everything in my power to consider how tired she is to prevent myself from expecting too much from her in too short a time frame. We started introducing bottle feedings on 2/20, as well, so navigating the staggered schedule she requires to rest in between has been an interesting curve ball, to say the least.

For a size reference for anyone curious- most 35 weekers are between 5-6lbs at birth, while my little girl is only just over 3lbs. She has her “adjusted” age considering gestation age vs born age, and then her “adjusted, adjusted” age considering how severe her restricted fetal growth had truly been. She may have been born at 26 weeks, but she measured 23.5 weeks from the get-go, so while it may sound a bit funny, that’s just how my brain likes to framework the chaos. She’s got a lot of catching up to do, that’ll easily span over the coming few years, but she’s doing the very best that her little body will allow right now, and that’s all this momma can ask for. It’s all about the baby steps - pun intended! More to come soon!

Although I truly am forever in their debt for saving my daughter’s life, the hospital is expecting an almost $10,000 bill to be paid in full by tomorrow. I simply don’t have that, and at the moment, we’re still pushing through this journey uninsured, so there’s loads more to come that haven’t caught up with us yet. When I tell y’all I appreciate you and every bit of love you’ve sent my way, I truly mean it! We have a long way to go, and I couldn’t have made it even this far without the village y’all have been for me!

3/5/25 update (3lb 12.3oz):

Raelynn is still requiring oxygen and has officially been diagnosed with Chronic Lung Disease. Her weight gain and feeding habits have been very inconsistent at best, so we’ve had to begin exposing her to as much practice with breast/bottle feedings as possible to build up her stamina as she learns to eat. Unfortunately, she’s been having a hard time maintaining a latch and enough energy to finish any sizable amount of milk, so we’ve actually tripled the amount of oxygen she’s getting (compared to what she’s been on for these past 3 weeks) to help give her a boost of energy, and in turn hopefully help her grow. She should be transitioning into an open basinet soon as she’s doing well regulating her temperature on her own, but we need to see more consistent weight gain before making that decision. I never thought of things so simple burning calories, but it’s a very real thing for babies her size especially, and it can all hinder her weight gain, if not balanced correctly. We’re in the stages now of biweekly eye exams (we’re closely watching some slight concerns from having been on oxygen so long), and follow-up ultrasounds, echos, etc to make sure we’re still on the right track. There’s been some things popping up here or there that we’re treating, but nothing to concerning. Our main focus is just to get little miss eating as she should be so she can grow and hopefully be looking to come home in a few weeks, if everything else goes well.

For whoever made it this far, thank you for listening to our story! I don’t take any of this for granted! Your support means the absolute world in this dark time! Thank you for being my village!