Well, here I was all excited to tell you guys, “WE’RE ON OUR WAY TO CALIFORNIA!”, but I guess a lot you thought we’d already left for Palo Alto because of the pics I posted from the going-away party last week lol! I think our send-off was thrown for us early because of schedule conflicts, but it’s made for some funny faces and awkward questions from people when they’ve ran into me at Target and such, haha! But I still wanted to post this anticlimactic announcement because I’m looong overdue for a blog update (sometimes IG captions just don’t cut it), and what better time to answer some of your whos/whats/whens/wheres/whys than this 10+ hour drive! It will give me a distraction from my swollen feet, sore joints, muscle cramps, heartburn, baby kicking my bladder… you know… that end-of-pregnancy-glory! Let’s just hope I don’t get carsick from typing :)
>> Q & A Time <<
WHAT!? You’re moving to Cali!? No! I’m headed to Palo Alto so that I can deliver Valor at Stanford University.
WHY am I delivering at Stanford? There’s a 50% chance that Valor is missing a vital enzyme called OTC (for short), like his late brother, Cruz. OTC deficiency is a liver disorder that runs in our family requiring immediate attention and an eventual liver transplant in order for affected boys to survive. Oregon, our hometown, does not offer infant liver transplants.
WHY leave a month before his due date? This was a request made by Stanford. They like all their out-of-town patients to arrive at about 36-37 weeks gestation to meet their new OB and any specialists involved (in my case the metabolic team, dietitians and geneticists), develop a strategic delivery plan, take you on a tour of the NICU, and to start a series of stress tests, fetal monitoring and regular checkups (mine start on the 6th)! This is also to lessen the risk of going into early-labor while still in Oregon, which in my case could be detrimental if Valor ends up needing a liver transplant. That scenario would result in a $120K emergency life flight – believe me – been there, done that.
I’ve heard of OTCD being detected through amniocentesis… WHY haven’t you tried to pre-diagnose him this way? About 80% of OTC mutations are detectable through amino, but the specific OTC mutation that runs in our family is buried too deep within the genetic code to be read. At this point in time, science lacks the technological capabilities required to examine one’s entire DNA pattern.
WHAT are his chances of survival if he has OTCD? 75%
WHY have I mentioned 2 different due dates? Valor’s actual due date is July 27th, but the doctors do not want me to go into natural/spontaneous labor because there are certain geneticists, dietitians, and metabolic specialists who have to be present during my entire labor. Childbirth is one of the most dangerous times of an OTCD carrier’s life (that’s me), and Valor will need to be tested within moments of delivery as a potential OTCD affected neonate. If my ammonia levels begin to rise and proper procedures are not followed to bring those ammonia levels down, I as a mother am at risk for becoming non-responsive, suffering stroke-like damage to the brain, and possible death. They are not highly concerned about any of these issues with me in particular because – other than some low blood pressure issues, low oxygen levels, and fever – my past 2 deliveries have been relatively normal and asymptomatic. To avoid all of this scariness from happening, they are trying to control the date that he arrives, and that date is tentatively scheduled for July 20th. However, if I start having contractions before then, my induction might get moved to an even earlier date.
WHAT kind of induction? C-Section or… ? Still don’t know yet.
Will you know right away if he’s sick? No. Cruz did not show signs until he was 3 days old. There are a series of tests that have to be done, and some of those tests can start out normal and then begin to look abnormal the longer he is out of my womb and separated from my nutrient system and my body’s OTC supply.
HOW long will you get to be with him before he’s taken to the NICU? There will be no skin-to-skin other than the few moments while they’re cutting the umbilical cord. I’m pretty sure I will cry uncontrollably at this moment. I told my husband he’s not allowed to leave his side until they finish all my tests/blood draws and let me go visit him. This could be up to 5 hours:(
WHY can’t you nurse him? Nursing is SO crucial! I know that nursing is one of the most important things for a newborn, and it makes me REALLY sad that I can’t, but breastmilk contains about 10X the protein an OTC deficient boy can handle. OTC is required to break down protein, so if he’s sick and I nurse him, this would essentially poison his system with ammonia and send him straight into a coma – just like Cruz.
WHEN do you get to come home if he’s healthy? Probably about a month from today. We will be there for precautionary reasons from July 1 until his induction date, but we’ve been told to allow up to 10 days in the NICU before an official diagnosis can be made. That puts us somewhere around August 1st… the day I HOPE and PRAY to be buckling him into his infant car seat and making the 10 hour drive home :)
WHEN will you get to come home if he’s not healthy? If he is proven to be missing his OTC enzyme like Cruz, he will begin his journey towards transplant. He has to grow/gain weight on a protein-free diet until he reaches the minimum transplant requirement of 11lbs (5 Kilos), and then once on the transplant list he has to wait for a matching donor type to arrive. Cruz actually had the most common blood type… let’s hope he and Valor at least have that in common! Sometimes donors arrive in 3 days, other times not for 3 months… And sadly, they don’t let parents be live donors except for in extreme emergency situations, due to the risk of complication. After surgery he’s kept to make sure his body doesn’t reject the new organ for several days, then he goes on to in-patient/out-patient treatment. The longest we could be gone is approx. 6 months, but hopefully it would be shorter than that because there’s an out-patient program at Oregon Health & Science University, the hospital in Portland only 20 minutes away from home.
WHERE will we be staying? We’ve had quite the array of housing issues… let me tell you! At first we thought we’d be able to find a place for cheap using Jared’s parents’ Marriott timeshare, but because of the busy time of year and how close we need to be to the hospital (within 20 mins) there was no availability. We’ve also been looking on our Airbnb and HomeAway apps, but nothing is even remotely in our price range! We’re on a waiting list for a one-bedroom apartment using the Stanford housing program, but so far we have yet to hear from our social worker who said she’d call when a room opened up. This would be the ideal situation, since they match Ronald McDonald prices at only $10/night! And we can’t stay at the Ronald McDonald until after he’s born because they don’t like to take prenatal patients, especially ones who don’t have a definitive diagnosis. Let’s pray that diagnosis never comes! All that to say, Stanford called us a few days ago and found us a hotel in a neighboring city that’s $110/night – much more than $10 lol – but it’s a good deal in comparison to the other hotels we’ve looked into. It’s an Extended Stay so we can be there for the whole month (July 1- August 1) without having to change rooms numerous times… which makes me happy because I want Ezekiel to feel as comfortable/settled-in as possible by the time I go into labor. (The word “Stanford” makes him really upset and nervous, and he says he will NOT go there, so we’re just calling this a “vacation where Valor is going to come out of Mommy’s tummy!”) It’s still possible that while we’re at the Extended Stay we could get a phone call about one of those apartments becoming available, and in that case we will move over there in a heartbeat! It’s much closer, cheaper, has its own washer/dryer for laundry, PLUS it has a separate bedroom, living room and full kitchen! Much more accommodating than a studio hotel room. PLEASE, JESUS!
WHO’S coming with me? Jared’s driving me down, but he’s flying home after a couple days so he can still run the evening services for The Bridge. Z will stay with me the whole time, which is why my mom is also coming down. She will keep me company until Jared returns for the delivery, and she can also babysit for me while I go to my numerous appointments! Did I mention my little sis is in the back seat too!? Her and my mom are sort of a package-deal since Lexi is only 9 (yes, we’re full siblings, 20 years apart), plus she’s built-in fun for Ezekiel!
How am I doing? Am I excited or anxious? I will miss ALL my friends and family tremendously, and I definitely teared up giving people goodbye-hugs over the last few days. I can keep my composure when believing and hoping it’s just for a short while… but there’s a huge part of me that’s secretly scared of what lies ahead. When I try to imagine being in labor, I see myself having a panic attack that I can’t recover from, and needing an emergency C-section because I lack the strength and mental capability to push through. The only thing that gets a mom through the hellacious experience of labor is focusing on the reward that awaits on the other side…… I can’t figure out what to focus on this time:( I’m sure God has some mysterious plan up His sleeve, as He always does… I just hope whatever happens will somehow bring redemption to my broken places, and shed some light on why Cruz’s story unfolded the way it did.
On a superficial note, pray we find a local POOL! The Extended Stay doesn’t have one, and I’m trying to figure out how to keep Z from total boredom while cooped up with all of us in a studio for a month in this hot weather! 😂
Thanks for reading, if you still are haha! Can’t wait to checkin to our home-away-from-home!