Rise Up 4 Ruby

Rise Up 4 Ruby Spreading awareness about Ruby’s medical struggles.

01/15/2026

Ruby on the move

  update When we received Ruby’s EEG and MRI results neurology referred us to a neurosurgeon. Her appointment was yester...
01/15/2026

update

When we received Ruby’s EEG and MRI results neurology referred us to a neurosurgeon. Her appointment was yesterday. Aside from her being a complete mess the visit went well. The doctor said he does not think surgery is needed at this time. Her pressures appear to be similar to the last MRI. He is not concerned about the loss of white matter (noted in radiology report) bc it’s expected with this type of brain injury.

He sent referrals to two other specialists that will
Help manage her CP and recommended 2 different orthopedic items. Said we needed imaging of her hips yearly and closely watch her left ankle/leg.

She’s been cleared by neurology and neurosurgery for her eye surgery. Her father will be working out of town for a while so I’ve asked them to push it to March.

There are no new obvious reasons that would explain what triggered her seizures. So far the medication changes are working.

Yesterday was the third anniversary of what should’ve been her due date. Times like these remind me of how fortunate we are that she is still with us and how grateful I am for her surgeons, Dr. Kevin Lally and Dr. Natalie Drucker, and her GI Dr. Essam Imseis.

PS- we’re still looking for an all terrain crocodile walker.

Made it through the EEG with no major issues (she kept it all on). Just took her back for the sedated MRI.
12/29/2025

Made it through the EEG with no major issues (she kept it all on). Just took her back for the sedated MRI.

We’ve started the 23hr EEG and let me tell you it was a workout for us both getting it setup 😅Tomorrow, after this is co...
12/28/2025

We’ve started the 23hr EEG and let me tell you it was a workout for us both getting it setup 😅Tomorrow, after this is complete, she’ll go a few floors down for a sedated brain MRI.

We’re on the hunt for a crocodile all terain walker in size 1 or 2. Rubys current walker is a loaner. We’re told Insuran...
11/21/2025

We’re on the hunt for a crocodile all terain walker in size 1 or 2. Rubys current walker is a loaner. We’re told Insurance won’t cover another mobility device for 5 years. This will give her freedom to move about our yard and go on other outdoor adventures. It is also foldable making it more portable.

  update Ruby had another seizure last night which lasted almost 5 minutes. She seems okay this morning. We’ve notified ...
11/16/2025

update

Ruby had another seizure last night which lasted almost 5 minutes. She seems okay this morning. We’ve notified her specialist but likely won’t hear back until Monday.

I was planning on walking through some of the events that happened when she was first born. However, with the recent occurrences of seizures I’ve decided to save that for another time.

Her wheelchair was delivered on her birthday and so far she is not a fan. We’re working on trying to make it look more kid friendly.

We’re also researching the possibility of getting her a service dog. One that can recognize seizures and help with her emotional regulation.

Welcoming suggestions.

On this day, three years ago, I was awoken in my hospital room by a call from the attending NICU physician, saying we ne...
11/14/2025

On this day, three years ago, I was awoken in my hospital room by a call from the attending NICU physician, saying we needed to come to the floor to sign paperwork for an emergency surgery. They’d started feeds the evening before through a tube because she wasn’t old enough to have developed a sucking reflex yet. They said she presented with vomiting and abdominal distention. She told us they suspected a hole had opened in Rubys intestines and the surgeons would explain more when we got there.

I was still admitted to the hospital due to uncontrolled high blood pressure. I’d had a couple rounds of magnesium to help prevent seizing due to preeclampsia. I was on multiple blood pressure medications that were not working. I was not allowed to walk, not that I could’ve made it on foot anyway. I had to wait for a wheelchair to be delivered so Matt could wheel me a few floors up to the NICU but only after being granted permission from my attending physician.

When we arrived in the NICU a flurry of people were around Ruby. We couldn’t even see her. The attending sent the surgeon to speak with us and sign consent papers. Literally the only thing the surgeon said to us was,” we’re going to open her up to take a look but if it’s too bad we’re going to sow her back up and let her pass.” The other female surgeon that was with him looked completely shocked and turned to walk away with him. And that was second talk of death we’d had in under 5 days.

We sat in the children’s surgery waiting area teetering between tears and numbness, trying to talk ourselves out of panicking. Not knowing if they could save her. We prayed God would save her. I’d waited so long to have a child. I begged God, you gave her to me please don’t take her away. A prayer I’ve prayed so many times since then. It was the longest two hours of my life (at least up until that point). Even now reliving these moments takes my breath away.

When the female surgeon came out looking for us I prayed she didn’t call us over to another room. Having worked security at a hospital I knew being called to another room was never a good sign, usually the worst sign. Thankfully she sat across from us so I felt slightly relieved. She told us Ruby’s colon had perforated and released bile into her abdominal cavity. They repaired the whole and cleaned up the bile. She’d have an ostomy for a while and they tested her intestines for some nerve disorder (which eventually came back clean) but other wise her outlook was promising. I thanked God. We could breathe again.

These pictures were the last time we were able to hold her (and only the second time we’d held her) for over a month. The last time we got to hold her while she was normal, unscathed, without scars or some piece of medical equipment attached.



Today, Miss Ruby turned 3 ♥️
11/13/2025

Today, Miss Ruby turned 3 ♥️

3 years ago today a nurse came into my hospital room and said “so we’re having a baby this morning”. Matt and I thought ...
11/10/2025

3 years ago today a nurse came into my hospital room and said “so we’re having a baby this morning”. Matt and I thought nothing of it and I said “no ma’am, you’re in the wrong room”. She looked confused and walked out.

I’d gone into the ER the prior evening due to very high blood pressure readings. The doctors assured me the night before I wasn’t having a baby anytime soon. They’d even seemed completely unbothered when I called the triage line (as my MFM advised me to do, she said call and advise them you’re coming and go), the doctor on duty said you can come if you want and we can check your BP. I said well my doctor said I was to come if I got a reading above this point so I’m coming. I’d just seen my MFM Monday. She’d told me I had the look of preeclampsia but wasn’t going to call it yet. She said worst case if my readings got high they’d admit me and monitor it until 34 weeks at the earliest, i hadnt even hit 31 weeks. My MFM had also just had a hand surgery and said don’t worry I’ll be back to normal before your baby comes. Again, this convo was Monday and I landed in the ER Wednesday.

Back to Thursday morning, shortly after the nurse who we presumed was lost left the room, a herd of probably 10 people walked in. A doctor whom I’d never met said “you’re going to die within 24 hours if we don’t get this baby out of you” that was it. No explanation, no options, just the stern ominous warning I was going to die. All but the original “lost” nurse left the room. She remained back to tell me
That doctor whoever was a pioneer in preeclampsia and that I was lucky he was there to review my case and just like that she left. Left us alone with our thoughts of panic, of dread. I kept saying it’s too soon, it’s too soon for her to come. But what do you do when a doctor tells you you’re going to die? I knew nothing of preeclampsia other than what I’d seen in an episode of Downton Abbey, where the character did in fact die. But other than that I knew nothing. I knew I felt terrible but being as everyone said you’re miserable towards the end of pregnancy I had blew it off. There were other syptoms. My body had swollen up like a water balloon. My head was hurting but honestly it did and does almost constantly.

As they rolled us into the delivery room i just kept telling myself to bury it. Push down the panic. Stay calm. And there I was heading into one of the most physically taxing events the human body experiences on 48+ hours of zero sleep and no food in almost 24 hours.

If you’re wondering why I’m writing this… it’s because i think i need to. it’s to spread awareness of preeclampsia, how quickly things can turn. To encourage pregnant woman to educate themselves prior to crisis. To advocate for pregnancy. To encourage you to ask questions. And maybe a little self therapy for me because writing it is easier than talking about it.

I often wonder, would I have died? Could I have made it another week? 2 weeks? Would 7 more days have saved my daughter from all the nightmares she’s had to endure? Who can say for sure? I do know if I could do it again I would challenged them. I would ask for an explanation, for the data and for MY doctor to convince me.

As we get closer to Ruby’s third birthday I’ll be sharing more about the events that unfolded. Not everything will be doom and gloom, but there is a lot of darkness before we saw the light.





  updateRoughly 7 months ago we were told of the abnormal EEG readings and MRI findings. We were warned of the extremely...
11/09/2025

update

Roughly 7 months ago we were told of the abnormal EEG readings and MRI findings. We were warned of the extremely high likelihood seizures would occur. At that time we were offered a rescue med and daily medication options that would both help with seizures and possibly help with her delays. We opted to start medication. Fast forward to Thursday 11/6, I got a call from Ruby’s nurse around 10:18 AM informing me Ruby had just had a seizure. Fortunately I was on the other line with someone from her neurologists office when the call came in. I was able to switch back over and get the info relayed to her doctor while I headed to pick her up. Rubys nurse and ABA staff handled everything as well as can be expected and I am grateful for all of them. It is hard for us to relax. Just when we think things are going smoothly Ruby throws us a curve ball. Reminding us to stay vigilant and prepared. I am grateful we knew this was a possibility so we weren’t completely blindsided. If there is such a thing as a perfect time and place to have a crisis this was it. And by that I mean a safe location, with eyes constantly on her, a nurse by her side, proper equipment on hand (she was in her activity chair insurance wouldn’t cover) doctor’s office on the line and a safe padded recovery area. Ruby is doing well and her med has been adjusted. Hoping for smooth sailing as we head into her birthday week 🤞

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