Thoughts on the eve of Gracen's Surgery

"You made me broken!" The visceral words directed at my parents spewed from my mouth as a 15-year old girl slamming the door. After finding my kidneys filled with 6 stones the size of peanuts in their shells, lots of scans and blood work at Stanford's LPCH, I was preparing to have the tumors (four, the size of golf balls) in my parathyroid glands removed - which also meant I'd be marked for the rest of my life with a 6-inch frankenstein scar across my neck. Hard to swallow, literally and figuratively, for any kid - especially a teenage girl. 

That comment, "You made me broken!" so untrue, but so loud and clear echoes in my mind as I sit here beside our Christmas tree while my own family sleeps, trying to gather my thoughts and courage for Grace's surgery at Stanford's LPCH tomorrow. 

Her last big hospital stay, Gracen at CNMC at 2 months old.

Her last big hospital stay, Gracen at CNMC at 2 months old.

At 6 weeks old, actually out here in California with my parents while Grant was in Switzerland, Grace had her first UTI - I remember rushing her to El Camino Hospital, laying across her in new-mom panic and not letting doctors anywhere near her when they mentioned "Spinal Tap". Two weeks later, she was back at Children's National Medial Center in DC for an 11-day stay with new UTI's - where we determined she was born with an abnormality - a duplicative collection system which was sending urine back into her kidney instead of out through her bladder. Our amazing, incredible, awesome urologist, Dr. Craig Peters, was truly a calming force as he explained that while she had stage 4/5 hydronephrosis and stage 4 reflux, there was a small chance she could potentially out grow it - but this would require daily prophylatic antibiotics for at least the first few years of her life. No surgery?! Let's try! 

The daily battles ensued trying to get Grace to actually ingest the antibiotics each day. In new mom naivety and having heard how "bad" juice was for a child, that first year I would be on the floor in tears covered in green, antibiotic filled milk and water she would inevitably spit up all over me. Once we mixed in an ounce of orange juice at around age 1.5, things got easier... but not better. The UTIs came back. And then back again. They were becoming resistant to the antibiotics - our worst nightmare - and occurring almost every other week with high grade fevers and new types of medications. It became difficult to identify the end of one episode and the beginning of another. Mother's intuition kicked in, Grant and I discussed options with confidence, and we knew what we had to do - not that after the dramatics of this past year, my month-long hospitalized bed rest and Emerson's 63 day NICU journey, did I want to be in the hospital any more. But whatever it takes to protect my girls.

So the Friday before Halloween Grant, Grace and I went in for her VCUG procedure, identified that there had obviously been no improvement, and sat down with Dr. Kennedy - who was dressed as an Octopus for Halloween. He delivered the options- wearing his Octopus suit - and while Grant was enthralled by the robotic surgery, we agreed upon the "Open" surgery which has a 99% success rate, but leaves a sizable scar across her abdomen. That December 10th date seemed so far away, but now it is tomorrow, and I am still processing all that is happening.

Stanford's LPCH is great. In reflecting on my own major surgery there, I have nothing but positive memories- which is why I was inspired to get more involved with the Ambassador's Program and why we do the 5k every year. I fondly remember the doctors and students who worked with us, and of course I have this scar across my neck to never forget the positive outcome -- instead of my own kidneys shutting down, I am now able to be a health advocate for my own two girls!

Life is a rollercoaster, I hope my girls always look to make the best of it!

Life is a rollercoaster, I hope my girls always look to make the best of it!

With my own hospitalized bedrest last October and Emerson's 3 months NICU stay earlier this year, I remember reflecting late at night that God works in mysterious ways - obviously He had me endure my health obstacles as a teenager to help me find strength in those times to bring Emerson to life when some doctors wrote her off as a very late stage miscarriage. I remember spending 14 hours a day at her bedside praying and advocating - building friendships with every nurse and doctor so they knew how invested I was in everything they were doing for my precious daughter. The gratitude was overwhelming. I also remember the guilt of being torn between Grace and Emerson - which will happen again this week as I won't see Emerson for the 5 days I am in the hospital with Grace recovering. But it will be okay. A moms gotta do what a moms gotta do. 

I have every confidence that things will go well tomorrow with Grace. To be honest, I am less worried about the actual surgery - I know she is in the hands of a skilled surgeon - than I am terrified of keeping a curious 2 year old still during recovery. Being stuck in a hospital room with a toddler is exponentially more difficult than my own bed rest or watching Emerson thrive in the NICU - but we have been blessed by an outpouring of friends who have brought over distractions of every shape and kind to help the hours pass by. Thank you!

When one of the rock-star moms from my moms group asked if we wanted a Meal Train set up for surgery/recovery, I graciously said, "no" as we had our fair share of doting upon earlier this year with Emerson's homecoming -- but that we did still appreciate prayers. While of course we welcome any prayers for Grace's surgery and healing, above all else, please pray with us in gratitude that God has given us an opportunity to fix what has ailed our little girl and in thanksgiving that as odd as our past year has been, God has gifted us with a beautiful understanding of the medical world to appreciate, navigate, and endure together whatever is thrown our way. We are so, so, so thankful. 

Whether you call it history repeating itself, or that everything comes full circle - I know that there is a deeper calling here - that one day Grace will look at me and say, "You made me broken!" when she wears her bikini to a high school pool party and gets self-conscious- and I hope I am just there with open arms to hold her tight and instill confidence in battle wounds like my mom and dad always did. 

Grant, thank you for always being my partner in navigating the curve balls we are thrown (2017 will be borning, I promise!). And mom & dad - thank you for being the most amazing role models I could have ever asked for, I couldn't imagine tackling any of this without the beautiful examples you've set for us, wise words, and help caring for whatever child I can't be with as we hit day 119 in the hospital out of my short, but long 2 years of motherhood.  

You know what is really fun? Hospital Bills

Ugh. The dreaded "Stanford Health" envelopes. From a brand perspective, they did a great job. The stationary is not only welcoming, but also alludes to the fact that they mean business... and boy do they mean business. A few weeks ago, I posted how elated I was that I thought we had received the very last bill for Emery's NICU journey, but unfortunately that stay keeps taxing our bank account. Fortunately, insurance has covered much of the costs of her 63 day NICU stay and my 31 day hospitalized bed rest "vacation" in 2015... but we are finding out the hard to swallow truth about "preferred providers" even when we had no preference and we would have preferred to not have been in the situation. 

image.jpg

Each insurance company negotiates directly with the hospital on a "deal" and our BCBS just doesn't flow well with Stanford unfortunately. This afternoon I came home to approx $2750 worth of bills - which when you boil it down, isn't so bad. $2,069.50 was for 20x doctors visits in the NICU. Just routine, each visit lasts about 3 minutes. Deemed "Critical Care", the hospital charges $351.00 per visit, the hospital "deal" gets an adjustment of -$33.23, then insurance pays -$254.22 and we are left with just $63.55/day to pay out of pocket... which I get could be a lot worse -- but it adds up and with Emery's "High Risk" Clinic coming soon and ongoing appointments, blood labs, etc. 

The $675.43 bill was for the ROP Eye exams back in February which our insurance doesn't cover at all. Now if you remember the discussions on Retinopathy of Prematurity, being born at 29 weeks, there was a high likelihood that Emerson could be blind and have a detached retina, but we went for weekly exams at $515 a pop to determine severity/risk as if she had been found to have damage, we would have options to proceed surgically in hopes of maintaining the possibility for vision. 

To date, we've paid out of pocket over $20k for Emerson's premature birth, and obviously every dime is well worth it now that we have this beautiful, happy little girl home with us. But man, the pain keeps coming... and we are in a fortunate position... I cannot imagine a younger couple facing the situation who may not have the savings and "cushion" we do. 

We are blessed with the greatest of wealth with a healthy family right now, but if you are sending some prayers up to the big guy tonight, please pray for the families who aren't as fortunate as we are...

 

Have beautiful, outgrown Children's clothing? Gift them to the most special of families

The following request was sent out by the director of chaplaincy services at Packard Children's Hospital. If you have nice clothing your child has outgrown, you can help a grieving parent who has just lost a child. Please contact The Rev. Brady directly.

I recently received a request from a staff member of our Bereavement Services that one of the Intensive Care Unit social workers brought to her attention hoping we could help. The ICU social worker is aware that when a child dies at the hospital, often the parents, desiring to dress their child in nice clothing, will run across the street to the mall to try to purchase a new outfit in which to dress their child. Some clothing is kept on the unit for that purpose but the supply is evidently dwindling and the hope is for the clothing to be replenished.

Thank you for considering,

The Rev. Diana Brady, M.Div. 
Director of Chaplaincy Services
Lucile Packard Children's Hospital, Stanford

dbrady@stanfordchildrens.org
(650) 497-8538

Back in the hospital but doing great!

Being home for two weeks, Emme has been doing great so far with no major spells- we have been very very fortunate. Then last night around 6 we started noticing she was having a very difficult time breathing- struggling for air and wheezing. While it wasn't anything overly alarming, we called out pediatricians nurses line which had us go to PAMF's Pediatric Urgent Care.  

Once hooked up to monitors, we saw she was having periods of oxygen dipping into the 86 range, so the on call pediatrician has us directly admitted at Stanford's Children's Hospital. Her little cough seemed to be taking everything out of her. Although she has had the first round of the vaccine Synergis for RSV, we explored all viral options and did swab testing. 

Since she was due tomorrow to be born(!!) they treat her extra carefully, though at this time we are thinking it is just a viral cold- nothing we can treat with antibiotics- so just having her monitored to ensure the breathing struggle doesn't require oxygen/intubation. The one highlight was finding out she now weighs 8.2lbs!! Can you believe our little Preemie who dropped down to 2lbs is now over 8lbs just 11 weeks later?!? We joke I am serving up buttermilk :)

Packard vs El Camino's NICUs is a blog post I'll save for another day- aesthetically as different as different can be (I'd take El Camino any day!) That said- the one universal quality is NICU doctors and nurses still amaze me with their brilliance and bedside manner- kind, compassionate people whom I truly believe put themselves in the shoes of the parents to help educate and make decisions during scary times.   

Now that we know it is nothing more serious and have been able to rule out a lot, will likely be discharged tonight to go home (they don't allow parents to fall asleep at the bedside of the babies so being somewhere I can rest my head would be greatly appreciated at this point!)  

image.jpg

It is surprising to me how emotionally removed Grant and I have become from hospital procedures- we know the drill and move forward asking questions about care, but without tears of fear and frustration flowing dramatically  as we now know as parents, you do what you have to do and count blessings that we are in the epicenter of world class care.  

It is like a drill- that even the extended family has become part of- Pat and Simone came over to watch sleeping Grace as we headed to Urgant Care, by the time we were admitted they'd taken Kellydog back with them and my mom was in her Jammies in our guest room tending to Grace. With Grace taken care of, we could focus on Emme's immediate needs. Talk about blessed...

Heck, the toughest part of this whole visit has been me texting Grant trying to get him out of bed at home to bring my pump parts so I can pump as its been 12 hours and I am in a pain only other breastfeeding mamas would understand! Still waiting... he's not a morning person but Emme and I sure are :) 

 

 

Volunteering with Lucile Packard Children's Hospital Ambassadors at Stanford

Yesterday I had the honor of volunteering at the "Back to School Party" at Lucile Packard's Children's Hospital at Stanford- providing the littlest of patients with an opportunity to share in the excitement of going back to school (the hospital has a school for long-term care patients) by decorating backpacks, door hangers, bookmarks and taking pictures in the photobooth! There was even live music! Unfortunately I don't have any pictures out of courtesy for the patients and their families but it was a wonderful experience - not only to see the excitement of the children, but the gratitude of the parents having an uplifting activity for their little ones to be included in.

The hospital's "Forever Young" playroom

The hospital's "Forever Young" playroom

 

LPCH has a special place in my heart. Although I was 15 when I had my 3 & 3/4 parathyroid tumors removed in a rare parathyroidectomy, they did the procedure at the children's hospital and took great care of me - in large part the reason why I am still here today and actually have functioning kidneys! Amplified by our time last fall at CNMC with Grace, paying it forward (and back) to the hospital was something I knew I wanted to champion upon my return to the Bay Area. 

Looking forward to getting more involved, and hope you will join me - more information about the ambassadors program can be found here!