Hi everyone, my name is Tiffany and I want to share Alyssa’s story. I truly want to do this with as much dignity and grace as I can. However, I truly feel if you want to ask for people to reach in their pocket for you then it’s best to explain what your needs are and explain why you need their help.

My Daughter Ashley recently gave birth to her 4th child (my 11th grandchild ). Ashley has 3 happy and healthy children at home after struggling in relationships she is finally in a happy and healthy relationship. This pregnancy certainly wasn’t planned, but it was welcomed! I did ask her and Floyd for permission to set up this account and they agreed. I then asked if she’d do her best to tell their story. Here it is in her words…..

“January 25 ‘25 Floyd & I became official. Maybe the happiest day I’ve had in a long time. About 2 weeks later, we found out we were expecting. This wasn’t planned or even ideal for us at the time, but we never let it break us. He has an amazing son, and I also have 3 beautiful children. His son Amari is 4. Aria is my oldest, she’s 8, my son, Corren is 4 and other daughter, Averi is 2. All the kids were excited about the baby, almost as much as we were. Our story is crazy but it truly is a love story. Whatever happened, we made it work and just kept going, always.

My 3 other pregnancies were uncomplicated. I had severe nausea and vomiting with all of them, and that kept me pretty still. It was very difficult to move around much, but otherwise no concerns. Somehow this pregnancy was different.

When I met his mom and we told her she was having another grandchild, she became very invested in the baby and very hands on with us and our other children. She even asked me if I had healthy babies or if I had ever had complications. I was like, “yeah besides being sick constantly, my pregnancies and labor, it all goes well. Healthy babies, no issues.” No one knew what was coming soon after that conversation though. None of us knew how quickly things would change. It was my 20 week checkup, about an hour into the ultrasound I started to notice the nurse looking at the same places over and over and over. The heart, brain, and stomach. She then proceeds to go get the doctor. My heart racing, I knew something was wrong. The doctor comes in and proceeds to look at those areas and says “well your baby has some fluid on the brain, cerebellum isn’t there, and the kidneys look like they aren’t formed properly”. I had no idea what any of that meant, I mean yes, I knew what it meant but I had no idea how significant any of that was, how complicated or difficult it would prove to be. Most importantly, I didn’t know anymore, just what to expect for my precious baby. It just wasn’t enough information, he basically told us the scariest thing ever with no real explanation or any words of comfort. He then said, “it looks like it could be this thing called dandy walker, look it up on google. It could affect the baby’s motor skills.” And that’s pretty much all he said, just look it up on google. My thoughts are all over the place and I just want to call my mom. Soon I would get a call from a specialist at Cook Children’s hospital and that’s when I because more aware that this is much more serious that what the first doctor suggested. A month later my mom flies in from Cali to join us, along with his mom. All 4 of us travel 6 hrs to Ft Worth. They did a MRI of the brain, an Echocardiogram of the heart, and another sonogram of her kidneys. It was all so unbelievable and scary. The tests confirmed what was previously seen and we were then facing a diagnosis of Dandy Walker Malformation, possible heart defects, and kidneys that were not functioning properly. It was all very deflating and overwhelming to say the least. We tried over the next few weeks to wrap our brains around all this information and try to learn what that would mean for the baby, for us, her siblings, and extended family too. We live 6 hours from Fort Worth but we were going to have to go there before my due date so all the specialist would be able to be present as soon as I gave birth. Alyssa was due Oct 21st. Then there was the sonogram that found too much amniotic fluid August 7th. That usually leads to preterm labor, I mean, why not make things more interesting if we can, right? I had another scheduled sonogram on September 10th in Amarillo, asked the doctor to check my cervix because I thought I was experiencing some contractions. I was actually dialated to a 4. They called the specialist and were told we need to be flown to Fort Worth ASAP. The only thing wrong with that idea was that I had started having more contractions closer together and they needed to get those under control before we could go up in that plane. It took many hours but we finally got to where we needed to be a little after midnight. Alyssa’s made her arrival on 9/11/24, at 5:25pm. My beautiful baby that didn’t make a sound. She wasn’t breathing, they tried for what seemed like an eternity to get her to cry and breathe. We had still been indecisive about a name but her dad picked her name. He honestly just made a declaration, “ her name is Alyssa,” which later we found out was very meaningful. They immediately started hooking her up to machines and tubes. We have done so well to hold on to faith and hope, yet here she is, our worst fears realized and I’m broken at this point. I held her a few short minutes and she was quickly taken to Cook Children’s NICU. So now we add prematurity to all the other complications. She’s on oxygen, a CPAP, NG-tube, IV’s going to her belly button, everything is taped on and strapped down. I can’t even see her little face. We’re exhausted. This all started on the 10th in the early afternoon, we had not eaten or slept, we’re sick with worry, but relieved and hopeful that she’s in the right hands. We took a deep breath and then my mom finally arrived.

The next day they do another MRI of the brain, Echocardiogram of the heart, and sonogram of her kidneys. They confirmed that the kidneys were working, but not sufficiently. It seemed they were wrong about the heart, or at least what they thought they saw, it did not exist (Finally some good news) all 3 of the malformations they saw with the brain were also confirmed to be still present, in addition to 3 more complications they found in the brain, 6 total. The doctor tried to reassure us that the problems with the lungs were most likely related to prematurity. They gave her surfactant to help them along and that should help that. She should be much better in a few days.

She was weening off the O2 and doing fairly well. The Neonatologist predicted we’d look at discharge being close to the baby’s actual due date of Oct 21st. There was no availability at the Ronald McDonald house. Knowing it was about 3-4 more weeks to discharge we had to make some different arrangements for the other kids. They are all separated now. They call me everyday telling me they want me home, they cry on FaceTime and just continue to beg for me. This has to be the hardest thing in life and sometimes I don’t know if I will overcome these feelings. My mom took the kids to Kansas City the next day to stay with my older sister, their Aunt, headstart is part of daycare there, not part of school, so it costs $300 a week plus the other toddler for $300 a week. We can’t afford that on top of everything else, so we had to improvise. The oldest stayed in KC, my son stayed with his other Granny and had to switch schools as well for the convenience, the toddler is with another Aunt & Uncle and her grandparents too when needed. ‍That was a big relief, but to be away from your kids when you’re feeling so vulnerable. Knowing they don’t have you for no telling how long, on top of being separated from each other. OMG please let things start to improve.

Baby Alyssa’s heart started struggling because the lungs aren’t sufficiently doing their job, so back to the CPAP, then comes the pulmonologist asking if we have cystic fibrosis in the family history, cardiologist is now onboard. She does have some heart problems after all, just not what they saw during the pregnancy. She has a tethered spinal cord, that isn’t troublesome at this point but will need a surgical procure to repair in the future to prevent long term complications. There is something unusual about her eye sockets as well. They predict extreme nearsightedness. They have told us to expect significant developmental delays, seizures, and cerebral palsy. She most likely will not walk or ever be contenant. She is having to have a catheter inserted into her bladder every 6 hours because it’s not draining fully and the kidneys are already damaged. We can not risk more. She is being suctioned often and medicated for excessive oral secretions because she can’t swallow. She continues with the feeding tube but has lots of reflux, probably related to the pressure caused by the CPAP. She can’t regulate her body temperature. She keeps desatting and I honestly saw it drop as low as 5% for a second or two and I can’t tell you how helpless I felt. So here we are 2 weeks old already, but her lungs are getting worse not better, she has pulmonary hypertension, hypertension related to a valve not closing between the left and right upper chambers of the heart. This valve was suppose to close automatically after birth, it did not. We had a care conference where they explained that we had to get the hole closed in her heart or there would be no improvement. This is accomplished through either a heart cath where they will just plug it or surgery where they will suture it closed. Tuesday, Oct. 1st. We will try the heart cath because it’s least invasive, If that doesn’t work we will then discuss heart surgery. Her lungs are smaller than they should be. She most likely will be looking at a feeding tube long term. They removed the due date as a possible discharge date and have basically tried to tell us to hold on for the long haul because we’re going to be together probably for months. It seems like each moment brings another complication. The doctors remain hopeful that there are still things that can be done and there’s no reason yet to believe we can’t overcome the parts of this that are life treating at the moment.

We, as parents and her siblings, could all use your thoughts and prayers. For now, we need to be together and close to our baby girl. Postpartum is very real and coupled with all these fears and complications it’s a very big concern. With the frailty of Alyssa being so significant we need to be here with her and to be able to support one another. However rent and utilities don’t pause, regardless of hardships. Alyssa needs a home to come home to when that time comes.

I am sorry this turned into a novel. I still feel like I’m leaving something out somehow. I just felt compelled to express the severity of Alyssa’s condition so you could understand the importance of both parents being there through this journey together. Also, I haven’t said most of these things out loud. Most of our friends and family know we have come concerts, but very few know the extent of what we are facing. Maybe we were trying to just be hopeful, maybe we have somewhat been in denial. Whatever the case may be, this is all bigger than us and we need help. We need emotional, physical, and financial support and we’ve almost exhausted all of our resources thus far. We realize there’s no limit to the list of people who need help in this world or even friends and family of your own that could benefit from any financial help you had to give. I humbly ask you for your thoughts and prayers. I ask you to share this post with as many as you can. I know that there’s a gofundme or fundraiser about every other post, but please, if you could spare $5, $10, $20 etc that adds up and truly would help us so much. Thank you for reading. Thank you for your support emotionally. There’s no way to know the future and as much as I’m trying to stay positive it’s very hard to do when things continue to get worse instead of better. My baby girl, the final piece to our puzzle, our one child that we brought into this world together, we love you so very much Alyssa. Her Father and I are learning and trying to cope and get through this time the best we can. Keeping the faith has proven to be quite the challenge. We just want our baby girl safe and healthy and to come home. Please know it’s understood that times are hard, and if you’re unable to help financially please share and continue to support us emotionally it means the world. Truly! If you’re in or around Cook Children’s in Fort Worth Texas the Ronald McDonald house is just a block or so away. A hug or a home cooked meal would never be turned away. Thank you for your time we love and appreciate you all and look forward to the opportunity to pay it forward when our turn arises, as we’ve done before. #dandywalkermalformation #dandywalkerawareness

#Alyssa’sAdventure