1,137 posts

Oh man, a HUGE thank you to @southwestair , who opened their gracious #southwestheart and donated air-passes to get us across the country for Alexa's upcoming open-heart surgery at @stanfordchildrens So grateful for all the help we have received during this insane time... thank you, #southwestairlines 4eva! . . . #chdwarrior #chdawareness #openheart #flying #lucilepackardchildrenshospital #stanfordchildrenshospital #finalcountdown
[ #becauseofanorgandonor ] Noah on the GO! Thank you God for making Noah able to meet all of his milestones. You would never know he was a transplant child just by looking at him. Reach for the stars baby boy, you are making so many people proud. — Repost courtesy of @noahstrong17 // From January 29, 2018 // #endthewaitinglist
Day -14 to transplant. Kruz is headed now to start MRI of his entire body. They don’t want to put him to sleep so they will have to break it up into sessions. This is looking for signs of strokes. (Atherosclerosis a symptom in SIOD) Strokes cannot be totally prevented in SIOD but they want to be aware of troubled areas. He just had another Aranesp shot to boost RBC production. Paizlee has her first appt in the morning checking kidney function & thyroid. Papa comes tomorrow to stay for 10 days, we’re so thankful for that. Still should be an easy going week resting up for “Conditioning” (Chemo) to start. #stanford #stanfordchildrenshospital #lpfch #lucilepackardchildrenshospital
Day -15 to transplant. Kruz back there enjoying cheese-less pizza. We’re staying in the PCU 300 until Friday & then we move down to stem cell unit. We are doing PD dialysis this week and will go back Hemo towards the end of the week when we start getting ready for chemo. Kruz has had some drainage in his ear so we have drops and he’s on an antibiotic for that. Getting it cleared up before we head downstairs. Papa comes Wednesday the 23rd so we’re excited about that & Paizlee has her first kidney doctor appt here that day. I start 5 days of shots on the 25th. And no changes on dialysis really besides they want to pull more fluid off kruz. So instead of 8 hours every night it will be 10 hours of PD. Kruz is happy as long as we keep the cheese less pizza coming 🤷🏼‍♀️ Momma has been working non stop in my “down time” - if that’s such a thing... Daddy is the real MVP & taking good care of Kruz & all of us. Paizlee is - as always - happy, little on the energetic side but being a good girl for the most part. Should be an easy week. The 27th starts the big stuff. Rest up prayer warriors.... we will need some powerful ones. We love y’all and so thankful for every one of you. Every kind message. Every single prayer. #stronglikekruz #kruznforakure #lpfch #siod #stemcelldonor #stanfordchildrenshospital #siliconvalley #sanfrancisco #chanzuckerberginitiative
3 am Eclipsed run🌓🌔🌕🌗🌘🌬❄☃️ Kidney donor athlete Hope for Liam I run every mile for my sweet son Liam💙🌟🙏 #hopeforliam #kidneywarrior #kidney4liam #transplant #liamisgoingtomakeit #givelife #Stanfordchildrenshospital #livetransplant #kidneydonor #marathontraining #endurancerun #trailrun #ultraruner #vegan #fith #marathontraining #kidneydonorathetle
It's time to start Fontan planning and break out the obsessive reasearch. Judah's echo this week looked great and his heart function is holding steady with no change to his heart medication dosages. Cardiology will be in touch with Stanford to get our boy on the books for a cath come July/Aug with surgery planned for Oct/Nov. Almost a year away but this obsessive mama already broke out the research and stumbled upon a great comprehensive article on single ventricle patients from prenatal through post op Fontan. It had a lot of information and citations for current leanings, Fontan at age 2-3 or later when saturations start to drop? Fenestrated or not? I was swooning and sending myself the article to prepare my questions when I saw the articles main author is one of Stanfords Docs (one I loved!). I suppose I won't be needing to print it and make sure they've seen it! 😆 . . . #chd #chdawareness #heartstrong #chdwarrior #warriormom #medicalmama #nursemom #newnormal #fontan #singleventricle #tinybutmighty #littleandbrave #congenitalheartdefect #thislittleofmine #medicallycomplex #lpch #stanfordchildrenshospital #halfaheart #heartwarrior #thisismotherhood #thisisourstory #oureverydaylife #mamabear
Go Patriots!!! 🏈
What if you had to figure out ways to raise millions for your babies? You had to wake up everyday knowing what you do today, actually matters. The time you waste is longer time it takes to the goal. I think what drives me most is knowing how I would feel if something happened to Kruz and Paizlee & I didn’t give it my all. It’s my calling & purpose here on earth to wake up everyday and help change the outcome of their life. You only have one life. One chance. Some of us are blessed more than others... but we all have the power inside us to accomplish anything our mind can physically dream up. 💜 #stanford #lpfch #stemcelldonor #raregenetic #researchfunding #SIOD #chanzuckerberginitiative #stanfordchildrenshospital
Day 1: I slayed the beast and DOMINATED my Boss Battle!!! I'm left with a chest wound, but my Navi has me under rest for a few days. Soon, I will show my new self!!! 💙💚❤️#LegendofOwen #williamssyndrome #chd #tinysuperheroes #raredisease #raiseawareness #babies #babyangel #miraclebaby #texaschildrens #texaschildrenshospital #stanfordchildrenshospital #lucilepackardchildrenshospital
Fire and Ice Annual Gala #stanfordchildrenshospital Last night.
Splashing through puddles and climbing on rocks are the best ways to start Saturday morning. 💚♻️
It goes without saying, Callie is a superstar⭐ She has been through so much testing over the past week and half...her heart cath shows pretty much the same results as 6months, we are happy it is not worse but wish it was better. However, clinically she is doing better with improved oxygen saturations, so that is good and means the medication is doing good things for her in the moment. But, due to the lack of improvement of the cath results, she will be starting a second pulmonary hypertension. We were given 2 options, 1 to add the second oral medication OR start her on a constant infusion of a medication called remodulin - there is limited research to show which is the best option for Callie due to her unique anatomy and she is not bad enough yet for them to say, she has to have the remodulin. Remodulin is not something that is easy to be on and the site can be very painful at times. We have chosen to start the 2nd oral medication and pray like hell - that this will do the job for her. Nobody can ever tell you, 100% for sure the correct solution for a child like Callie, we are told over and over how unique she is with the anatomy of heart and we appreciate the effort of all the doctors at LPCH and how they strive to give us the most information possible, so we can make the BEST decisions for Callie. But, it never really is easy. Callie also has some fibrosis of the liver that is affecting her spleen but for now we will just monitor her closely for any noticeable changes. Nobody can say for sure why this is or when this started. She has always had some underlying liver issues since birth. We will follow up with some more blood work once we return home. The plan currently is return in 1 year for a follow up - if we see her energy level go down or her oxygen decrease we will need to return sooner. Callie is truly remarkable and I am thankful everyday that she continues to beat the odds. I pray she can continue push on and show everyone that she is unstoppable. We know God has great plans in store for her 😍One of the pictures below is Callie and Dr. Wright, truly thankful for her #stanfordchildrenshospital #chdwarrior #caringforcallie #pulmonaryhypertension
This sweet boy was given the green light to go off another medication!!! Noah is officially only on his immunosuppressant! 🙌🏼(which will be for life) Such good news and a great way to start our weekend. #noahstrong17
Today will be the longest day of Mommy and Daddy's life, but it will be short for me, because I'm gonna do some time traveling! When I go in for my Boss Battle, there is a secret potion that will put me to sleep and I will wake up in a few days! I'm not scared, I'm Owen Link!!! 💙💚❤️ #LegendofOwen #williamssyndrome #chd #tinysuperheroes #raredisease #raiseawareness #babies #babyangel #miraclebaby #texaschildrens #texaschildrenshospital #stanfordchildrenshospital #lucilepackardchildrenshospital
We just finished an interview with @nbcnightlynews on the importance of vaccinations and why people should truly look at the science behind vaccines to help keep people like Noah, infants, elderly and others who are immunocompromised safe. You can check out the interview on Saturday, January 26 with @lesterholtnbc. #noahstrong17
Day -14 to transplant. This boy 💪🏼 Kruz had Hemo port & Chemo central line placed. Before taking him back his doctor explained the team decided a bone marrow aspiration would be added to the list today as well. SIOD disease can cause bone marrow failure. So the team wants to see exactly what shape his bone marrow is in now & have something to compare after transplant. We agreed. Placement of lines/ports went really good. Bone marrow aspiration went well. He stayed in recovery a little longer to get his O2 back up. He’s going to be sore but he’s getting cheese-less pizza from his new favorite place tonight so he’s happy. 🛑 Also Important- We need your help. We have a lot medically going on, but it’s still vital to fundraise monthly for SIOD research. The research lab depends on our funding to continue paving the path for a cure. We’re doing a giveaway for Paizlee’s B-day fundraiser to help push us closer to the goal! It runs from today (the 16th) - the 19th. If you’ve already donated, simply donate again between these dates to be entered. (Min of $5 donation) ⬇️ LINK on FB - Thank you ALL- ❤️ For the prayers, love, sweet messages, and continued donations to KFK foundation for SIOD research. Also, Thank you for the gift cards you’ve sent out here or via email- we truly couldn’t make it with you guys! #stanford #stanfordchildrenshospital #lpfch #silliconvalley #chanzuckerberginitiative #kruznforakure
Please say a little prayer for this feisty beauty, she just went back for her heart cath 💓#heartstrong #stanfordchildrenshospital #lpchstanford #heartwarrior #caringforcallie #heartmodel
This little stud gave us quite the scare last night. He threw up 4 times and we have nothing to attribute it to but that maybe he ate something that upset his tummy. We are watching him carefully and ensuring that he is getting the nutrients and fluid his body needs. 🙏🏼
Hi from California! I was admitted last night for a CT Scan today. They gave me some weird medicine that made me loopy and sleepy, but I’m doing great! I should get to leave today and then I’ll come back for surgery on Thursday. I’ll post more soon!!! 💙💚❤️ #LegendofOwen #williamssyndrome #chd #tinysuperheroes #raredisease #raiseawareness #babies #babyangel #miraclebaby #texaschildrens #texaschildrenshospital #stanfordchildrenshospital #lucilepackardchildrenshospital
CHD awareness week is less than a month away and we would love some ideas! Last year our aunt and her friends knit hats for #littlehatsbighearts and we passed them out on the L&D unit where I work. I also made buttons and my girls organized a neighborhood parade. Please share any awareness week ideas! . . . #judahthelionheart #chdaware #singleventricle #tinybutmighty #littleandbrave #congenitalheartdefect #heartstrong #chdawareness #chdwarrior #heartwarrior #halfahearttwicethefight #thisisourstory #chdadvocacy #stanfordchildrenshospital #lpch #heartmonth #rockyourscar
Check Fb for our upcoming schedule. 💕 . . . #stanford #lpfch #stanfordchildrenshospital #silliconvalley #sanfrancisco
Rockstar⭐ Not thrilled with the exercise test but she knocked it out like a champ!! #exercisetest #chdwarrior #stanfordchildrenshospital
While I run hills, Sawyer sleeps ! He plays possum when I ask him to come run with me .. smart boy he is ! #brooksrunning #running #stanfordchildrenshospital #sbssurvivor #lucilepackardchildrenshospital #cerebralpalsykids
Just a boy and his shovel. 💚♻️
Yesterday my cath went better than I expected. I was so nervous because I feel very comfortable at Doernbecher and with Dr Laurie Armsby. She’s done all of my caths since I was a week old. I was not nervous for the procedure, but nervous about the people taking care of me. They don’t know me like Doernbecher does. It doesn’t help that they were nervous as well. Everything went well and I had 4 super awesome nurses in the CVICU. Every doctor we met was super awesome too. I’m happy that @stanfordchildrens is my new home for this kind of stuff. Thanks for thinking of me and praying for me too! Now for some downtime while my mom feeds me through the tube (because we forgot pump bags) . . . . #doernbecher #stanford #stanfordchildrenshospital #tubie #tubebaby #justinbieber #bieberbeliever #hero #warrior #chdwarrior #heartbaby #waitingonaheart #transplant #listed #status2 #ronaldmcdonaldhouse #paloalto #california #sunshinestate #myherohashalfaheart #dominicmylove
Travel buddies for life. Getting ready for my cath today! My tube is bothering me and I’m hungry so let’s get the show on the road!! Send me those good vibes and some good lunch ideas! . . . . #hungry #cardiac #cath #stanfordchildrenshospital #stanfordchildrens #waitingonaheart #myherohashalfaheart #chdwarrior #surgeryday #cathday #bestfriends #dominicmylove #justinbieber #ellendegeneres
Hot chocolate in hand - ready to take on a full day at the hospital! #stanfordchildrenshospital #rmhstanford #chdwarrior #callietakescali
Tomorrow I had over my son and put all my trust in her, Dr. Bertaina from Europe. Putting my trust in her team, Stanford, his nurses and dialysis team that will care for him. Want to hear a GOD thing? She’s the ONLY doctor in the world who has ever done this type of stem cell transplant on an SIOD patient in Rome. She just so happened to take a job in the states... that happened to be at Stanford in 2017 - also around the same time SIOD research started making headway. Only God can orchestrate that. I hand over my son because of these God winks. He’s got this. He’s placed the very best doctors for Kruz & Paizlee in their path, even brought a doctor from Europe. She’s even got another doctor from the Netherlands collaborating with her and being extra eyes since this type of transplant with dialysis can be tricky. Her bio is in comments, pray for her. She’s a phenomenal doctor. #stanford #lpfch #silliconvalley #stemcelltransplant #stanfordchildrenshospital
“scars are stories, history written on the body” — kathryn harrison ////////// and Evanna’s story is definitely FARRR from completion. On a day to day basis, I generally don’t stop and intensely analyze all of Evanna’s scars — as they’re just apart of her and who she is. I can’t tell you the amount wide eyes and jaw drops I’m met with when I tell people how many open heart surgeries she’s had (5... going on 6) at just the tender age of 4, or that we’ve even had to take her down to the USA for medical treatment (which are ALWAYS followed by questions of why the USA and not Canada, or if we have to pay for it privately). • Sometimes I get very emotional when I’m alone and think about everything our family has been through and what Evanna has had to endure in her short little life, but THANKFULLY those moments are few and far in between, and usually just in complete awe of our journey. However, these back to back surgeries have kept this aspect of our life a major focus lately (.... just ask my patient husband and a few very understanding girlfriends who’ve had to endure me telling “our story” over and over again to strangers lol), and earnestly praying this next surgery will be the last major one for a very long time. • I’ve said it before, but I’ll say it again — Evanna has got one of the most beautiful souls I’ve ever seen, and while a part of me is scared for what will come our way in the years ahead (when you take her history into account 😂), I know she will continue to inspire many... most of all, me. The privilege of being her mother has not been lost on me, and been both a little intimidating and beautiful all at the same time. #mymotherhood #theirvinehome #missEvanna • • • #EvannaheartsCalifornia #acaliforniamiracle #evannasspecialheart #evannastrong #lpch #stanfordchildrenshospital #heartmom #chdawareness #mapcas #pulmonaryatresia #holtermonitor #yyc #yycfamily #yycmoms
BACK TO BACK CARDIOLOGY APPOINTMENTS + CALIFORNIA UPDATE /////// so we saw 2 different cardiologists within the span of 1 week. Last week we saw our cardiologist’s colleague at the ACH Cardiac Clinic to discuss Evanna’s heart rhythm issues that she developed down in California during her cath. While our cardiologist specializes in severe heart defects, she thought it was best we see a different cardiologist who had a much better understanding of electrophysiology for this particular issue. • We discussed the problems we ran into down in California (particularly “Ectopic Atrial Tachycardia” and “wenckebach”), and the results of the holtermonitor test we did back in October. While her heart rate returned to normal months ago, the holter did show periods of wenckebach. She did however decide to try switching Evanna to a different beta blocker that doesn’t have to be given as often (q12 vs q8), and stated that we could potentially even wean it down to just once a day if tolerated. The tough news is what I once thought would just be a “temporary” issue is now looking like a life long one. While not uncommon with kids born with congenital heart defects, because Evanna’s heart has officially shown that it’s prone to heart rhythm issues, it’s something we’ll have to be extra mindful of and continue to monitor and remain on medication for the foreseeable future. In a sense, this isn’t a huge issue, as 12 lead ECG’s have been routine since Evanna was born, but we’ll just be adding periodic appointments with this other cardiologist and holter monitor tests to check and see what her heart is doing as we continue to adjust medications. • Today we attended our scheduled ECHO, had another holter monitor put on Evanna (see my IG stories later tonight) to see if Evanna’s heart is agreeing with this medication change, and met with our primary cardiologist Dr. Fruitman. First we discussed another lasix wean (a common postop diuretic), and the status of our “out of country” funding application for April’s surgery. • CONTINUED IN THE COMMENTS BELOW ⬇️⬇️⬇️
Our writer, Mercedes, and her kids spent some time at the playground and healing gardens at Lucile Packard Children’s Hospital, a beautiful and fun respite for kids who are sick or just visiting the hospital. And it’s also a great place to hug a dinosaur! :-) #mpmomsblog , #bayareamoms , #bayareafamily , #stanfordchildrenshospital , @stanfordchildrens , #paloalto , #healinggarden , #kidslovedinosaurs , #playgroundtime , #bayareagardens , @mkwiat210
NYE looked very different for us in 2018 compared to last night. Here’s to hoping all of 2019 looks much different from 2018 🙏🏻 #newyearseve #newyearseve2019 #adelynkathleen #family #nye #nye219 #stanfordchildrenshospital
Adios 2018! Noah became a toddler, pro at walking, his last visit to Stanford was April 17 and it was for a photo shoot with his surgeon, he was hospitalized 3 times and taken to the ER 4 times because of breathing problems and the flu, but most of all, his personality flourished and he is happy! Thank you everyone for following Noah’s journey and for supporting us. This is our “normal” and we look forward to sharing some big news with you in 2019. Our goal is to spread awareness about Biliary Atresia and Liver Transplants and to help people truly understand the amazing benefits of organ donation. We love you all. 💚♻️ #noahstrong17 #topnine2018 #2018bestnine #donatelife #becauseofanorgandonor . . . #biliaryatresia #stanfordchildrenshospital #livertransplant #transplantrecipient #liverrecipient #organdonation #hospitallife #sacramento #lifeaftertransplant
On Christmas Eve, we ran into a friend during our run who is the Park Ranger. He turned on the lights for Noah and let him check out his truck! #noahstrong17 #donatelife #becauseofanorgandonor . . . #biliaryatresia #stanfordchildrenshospital #livertransplant #transplantrecipient #liverrecipient #organdonation #22months #22monthsold #sacramento #lifeaftertransplant
A THOUGTFUL GIFT ///////// before our first California surgery, I was trying to find a photographer who would be willing to come to the hospital and take a few photos of our time down there and capture this pretty monumental life event for our little family (and in hindsight, should have totally asked my friend @kayleeausmus , because she has some mad skills and at least knows her way around a camera 🤦‍♀️). Unfortunately a bunch of added logistical stresses were added to my plate the months before we left, and so I had to somewhat delete this task off my “to-do list”, as my attention was pulled in so many other directions in the months leading up to Evanna’s surgery. If you haven’t noticed — documenting through photos has seriously been a huge coping mechanism for me over the years and grateful to my husband (who’s actually quite private) for putting up with it and going along with my endless shenanigans. I do okay on my own.... and with a little direction, Nick has been able to capture a few shots too, but it’s always a nice treat to have someone else come and take photos too. • About a month ago, a post over in an LPCH parent support group that I’m apart of directed me to Alissa of @themarkmakersorg , and the photography services she graciously provides for pediatric families in the Bay/LA area. I found her IG account and saw that she was already following me, so I quickly messaged her explaining that we’re coming back for one more BIG surgery in the Spring, and wondered if she’d be interested in coming to take some photos when we return to LPCH/Stanford. Not only has she agreed, but we’ve also already developed a little relationship, and love how she just understands why this kind of this is so important to me... and in a way, she “speaks my photography language”. Well, a few weeks ago, I was tagged in a little surprise she ALREADY had in the works for me... she had submitted one of my favourite photos of 2018 (without inquiring if I had a favourite, so I seriously love that she coincidentally chose this particular photo 🖤) and had it illustrated by the lovely Rachel of @abbie.and.friends •• CONTINUED BELOW IN THE COMMENTS ⬇️⬇️⬇️
Spent Christmas Eve with some precious @stanfordchildrens families. Sending love to all those inpatient this holiday season. #lucilepackardchildrenshospital #lucilepackardchildrenshospitalstanford #heartkids #heartwarrior #myheartkid #stanfordchildrenshospital #chdawareness
Time to tone out the baby talk🙉👶😂. . #boseheadphones #masonmichaelcarmona #firstdayout #stanfordchildrenshospital
Working on a black squirrel character based on a #blacksquirrel I saw at #stanfordchildrenshospital in 2016 Imma name her noir and get her made into a suit so PREPARE MY BOIS
My husband, kids and I enjoyed carrying out our annual holiday family tradition yesterday of buying and donating food to the @2ndharvest and buying and organizing care packages to deliver to families at the @stanfordchildrens , where both of our kids were born! My heart is full and it feels good to continue to teach our kids about giving back and helping others in need! ❤️ #PassionFit #Health #Wellness #Family #Love #GivingBack #SecondHarvestFoodBank #StanfordChildrensHospital #Holidays #CharitableWork
Another successful toy drive! Thank you New Brighton Middle School students and families for your generous donations! Hope you all have a wonderful holiday season! #nbms #toydrive #nbmsvikings #seasonofgiving #stanfordchildrenshospital #tistheseason #asb #nbmsasb
So Grateful that my kids were able to witness a dad who is generous. Proud that my husband took it upon himself to purchase and donate toys for the kids at #stanfordchildrenshospital I loved that we had the opportunity to show our two oldest kids that Christmas is not just about receiving. Thank you @kuo33 for being a great role model for our kids😊#blakekuo #nataliegracekuo
And it starts. Packing only necessities. Leaving your life behind. Booking one way plane tickets & a packed down car by the 31st. Not knowing how long you could be gone... 3 months? 6 months? A year? the plan for Paizlee? Will they attempt a bone marrow before her kidneys go down? Or go straight to dialysis? How soon after bone marrow for Kruz will they transplant my kidney? 6 months? We don’t have the answers. we go anyways. Faith. We simply pray everyone makes it home safely. Whenever that may be. That’s a real prayer. 🙏 #stanford #stanfordchildrenshospital #paloalto #sanfrancisco #researchfunding #SIOD #grantfunding #lpfch
On our way to Stanford Children’s Hospital. We are so excited to be a part of a study about the benefits of kids with Fontan surgeries and regular exercise. My mom has never told me not to run around or have fun and we both think that it has been one of the reasons I am still alive today. Thank you @stanfordchildrens for including me in this study!! . . . . . . #stanforduniversity #stanfordchildrenshospital #transplant #hearttransplant #waitingonaheart #cmn #childrensmiraclenetwork #cmnhospitals #ronaldmcdonaldhouse #ronaldmcdonaldhousecharities #myherohashalfaheart #blondehair #momofboys #travelbug
Had a fantastic time last weekend learning to drive a school bus that is also a mobile art piece/stage for Burning Man! Took the beautiful creation from Reno to SF for it's first charity event, the Guardsman's Christmas party supporting Stanford Children's hospital. @frebreezzyy tagged along last second & was a welcome addition, as it took us all about 8hrs to transform the ArtBus into the Golden Gate Bridge. Special thanks to @johnno_the_rhino & the @goldengateproject for bringing both of us onboard to help out with your dream, we are honored to be a part of such a special project! #firsttimeforme #stanfordchildrenshospital #goldengateproject #burningmanvehicle
Last night’s holiday dinner with just a fraction of my pdc family. I have learned so much from these people and have developed great relationships. It’s not always easy but ❤️ and respect #lpch #sequoiapdc #stanfordchildrenshospital #pdc
Handing your child over to a surgeon is truly a lesson in hope and faith. The risks and uncertainties that come with anesthesia and bypass on these fragile little people send tingling fear through our hearts. But what choice do we have? Surgery and research has turned a "death sentence of defects" into hope, into weeks and years in our arms, into home sweet home. So we hand our babies over wondering if they will come back the same, if they will come back at all. We worry about recovery and what the future holds, the effects of this life on a delicate growing mind and body. We wait with fear and hope because their story isnt over, cant be over, and their heart is still not whole. 7/11/17 was a momentous day in your story. It was a day when a surgeon said surgery was "worth a try". It was a day when a surgeon stopped your heart and you lay on an operating table for 9 hours while the "plan B team" stood by. In the end it was just a stepping stone on your path. You came out of your Hybrid stage II affectionately referred to as a "Glennwood", stable with a broviac, 2 central lines, an art line, 3 chest tubes and an open sternum. You came out and we celebrated the gift of hope and another day. . . . #glennwood #lpch #stanfordchildrenshospital #judahthelionheart #singleventricle #chdwarrior #littleandbrave #congenitalheartdefect #thislittleofmine #honestmotherhood #thisisourstory #motherhoodunplugged #chdawareness #halfaheart
Last years toy drive drop off at #lucillepackardchildrenshospital NBMS families are so generous! #stanfordchildrenshospital #toydrive
Update💖 We made it home Thursday evening😊 We have been waiting on results before updating. We rec'd a phone call yesterday evening from her CA docs, unfortunately the MRI has them baffled and at this moment they do not have all the answers. They are going to be conferencing on her with her surgeon and all team members on Wednesday morning to try to come up with a plan. All we can ask is that you lift her up in prayer and for positive news on Wednesday. We are hoping whatever is going on can be potentially be fixed with another heart cath vs. having to have heart surgery. Due to this, we may be heading back out there sooner rather than later but will know more on Wednesday. #calliegoestocali #chdwarrior #chdawareness #prayforCallie #stanfordchildrenshospital
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