Our sweet girl bounded into this world on February 12, three weeks early!  Following a relatively uneventful week in the hospital we were discharged and got to bring Atley home! That next day we were called back to the hospital because her bilirubin levels were too high.   Atley was readmitted to the NICU where our angel of a nurse, Rachel, noticed that her head looked quite a bit bigger than it had a few days prior [she was only 5 days old at this point]. 

Following a brain ultrasound that confirmed abnormal growth due to excess fluid, we were transferred to Children's Hospital. Once at Children's, Atley had an MRI and was diagnosed with Hydrocephalus. 

On her one week birthday Atley underwent brain surgery where a shunt was implanted in her head to assist the drainage of CSF. 

Things went well for a bit following her surgery until we noticed her shunt valve seemed to be pooling with quite a bit of fluid. We brought her back to Children's and her neurosurgeon confirmed that her shunt was malfunctioning and needed to be replaced.  This past April, Atley had a second brain surgery where she recieved a new shunt valve.  Following the surgery she healed incredibly well and there was hardly anything about her that would suggest she had any health issues. 

Sure, she had a few fevers here and there,  a couple ER and DR visits, but we attributed these issues to a growing girl in a germy world.  

Then in early July, Atley threw up.  Her amazing nanny, Anna, noticed some blood clots in her puke and contacted us right away.  I left work and met her at Atley's doctor's office.  Blood tests were taken which revealed a WBC count of double the normal range.  Atley also continued to throw up so we brought her to Children's ER.  

Blood and urine tests were quickly processed and found positive for a UTI and urosepsis.  Poor little bubba.   :(

Then, I was told they needed to tap Atley's shunt to ensure the infection hadn't spread to her CSF.  Not long after, we recieved the devastating news that her CSF tested positive for infection and Atley was diagnosed with Meningitis.  We have since learned that her Meningitis has manifested in the form of Staphylococcus epidermidis, or Staph Epi.  We are told that while this isn't too uncommon in kids with foreign objects [shunts] implanted, it is quite serious.  Her shunt was removed as it contained remnants of infected bacteria and an external drain was placed to expel all of the infected CSF.  

Atley's most recent test of her CSF showed negative for infection. If her 2 day culture confirms the negative, we will start a 10-14 day antibiotic treatment.  Following the completion of that treatment,  Atley will receive her 3rd shunt. We will stay in the hospital a few days following that surgery to ensure her shunt is working properly.  

Atley has been so brave and tenacious.  She lets the nurses know what she does and doesn't like and kicked out an IV that was placed in her foot!! We couldn't be more proud of how strong our girl is,  but we'd be lying if we said any of this was emotionally tolerable.  14+ days in the hospital isn't how our sweet angel should be spending her first summer! :(

Which brings us to the reality of wondering "How are we going to pay for this?" We have great health insurance but this particular hospital system falls under a "Tier II" category which holds a much larger yearly maximum than Tier I facilities.  While it seems almost ridiculous that two working parents should need financial help... here we are. 

James is working a full time job and was recently hired as a part time police officer, I work my full time job as well but have completely zeroed out my PTO.  In order to be with Atley, we need to take time away from work -  lack of days off and PTO  greatly reduces that option.  It's hard to have to choose between work and being with Atley as she braves this long and painful hospital stay.  

So now, red-faced and stuck in this corner,  we are reaching out to you all. Your support will help us be able to tackle these massive hospital bills ["Pay Now - Ask Questions Later"... you know the type] and give us flexibility to be able to be by Atley's side, comforting and supporting her the very best we can.  Donations will be strictly distributed amongst our many hospital bills.

We are so thankful for everyone's love and support, your thoughts and prayers keep us going each day.  We cannot wait to share our precious and HEALTHY angel with the world! ♡