Rise Up 4 Ruby

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