Praying for Camille Grace Gwartney

25/07/2016

This was the longest 2 weeks of my life. 14 straight days before I could even hold Camille after her 2nd OHS. Between when she was first born and her 2 previous surgeries I have gone a total of 26 days of not being able to hold my child. Each of these were honestly worse than the day before. The critical time after surgery (normally a few days) but for Camille after her 2nd heart surgery was weeks after her code. It was the scariest single moment of my life. I thought nothing would be more difficult to experience than during the 12 hour waiting of her 2nd surgery. When I would get update after update that there was still significant bleeding on her unifocalization in the operating room. I'll never forget her being wheeled out with her chest left open. It remained open for 6 days the swelling was so severe. I literally saw my child's heart beating underneath a thin strip of some protective material. When I think of those memories it was like it was yesterday. And I am so scared of ever going back there again. So scared of being that close to losing the greatest part of me. But I am so hopeful and I have the strangest sense of peace and confidence in this next surgery. Confidence that I will never go through that again. Confidence that she will WALK out of that hospital. And not only leave it but leave it stronger than ever. I almost feel naive feeling this way. But I am attributing it to something greatest than myself. I can't explain how I feel other than peaceful and hopeful. And the first 2 times around were nothing like this. I never felt bad about them but I never felt good either. I felt like we were just doing what we were told we had to do. I truly believe that the Holy Spirit is calming my soul and whispering so sweetly that she will come out stronger than ever. I can't explain it. I feel crazy even trying to. And I am sure that the nerves will kick in as we get closer but in the meantime I am relishing in this sense of pure peace and comfort that God is blanketing my soul with. I believe in all of my being that this surgery will only be the beginning of Camille's story. What she has been through is a great testament to what God has brought our entire family through BUT I believe that it is only the beginning. She has an entire future to
make and that includes glorying His name and spreading His message through her story.

Brad Gwartney Kolton Lee Wallace Stacy Gwartney Austin Gwartney

Thank you God for this moment.

17/07/2016

WOW!!! We are 19 shirts away from our goal! Y'all are absolutely amazing.

LONG POST but worth the read

Buy a shirt to help support Camille and family while they travel to Palo Alto, CA for Camille's 3rd open heart surgery

13/05/2016

Here's an update. And it's long. And absolutely, 100% shocking... And scary. And our hearts are broken. I almost didn't type this but I chose to just so we would have people flooding the gates of heaven with prayers. I normally put my posts together through creative writing but I don't know how to do that on this update other than to just be blunt and state what we were told.

We were expecting an outpatient procedure with at least a one night stay for observation. And then go home. That's no longer the reality.

We went into today knowing Camille would have a cath Monday. We thought this would be extremely routine. Dr. Justino said because of how sick Camille's heart is this will be anything but routine. Basically (looooong story short) Camille SHOULD have been having regular caths... At least 1 a year if not one every few months for a year or 2 for MAPCA (collateral) maintenance. The collaterals need maintenance to keep them open with optimal blood flow. For those who aren't aware of all of Camille's heart defects her MAPCAs are the ONLY way her lungs get blood flow. Without MAPCA blood flow the lungs don't get what they need & the heart gets extremely sick as a result. Severe right ventricle pressure, severe tricuspid regurgitation & basically Camille's blood is so backed up that's it's traveling from her right ventricle, to her right atrium, across her ASD to the left atrium then back down to the left ventricle then to her body. That is not normal. Basically blood flow is so backed up its going everywhere but where it needs to go and has made her right ventricle practically double in size it's so enlarged as a result. That is horrible, horrible, terrible for her heart. That is not normal and her body can only sustain blood flow through that route for so long. Her right ventricle pressure as a result can get to a point of no return if the blood is so backed up, which it is. We won't know the extent of damage to the right ventricle & the exact pressures until getting into the cath lab.

This should have been an extremely routine procedure with a less than 1% chance of cardiac arrest or severe complication. Because things had gotten so bad he told us very bluntly to be prepared for the possibility of not just coming out on the ventilator but ECMO (essentially life support). He gave her a 15% chance of cardiac arrest or another severe complication. He said that he is considering her and this procedure a high risk for a severe complication. But unfortunately there's no other solution. It has to be done otherwise her heart will just continue to get sicker and sicker & the pressures are unsustainable.

He also said that had this been routine he would expect to be in there 1-2 hours tops. Instead he said he expects in his own words "to be in there hours and hours" basically as long as Camille will let him go to work. Once she starts showing any signs of being unstable he is going to pull out and try again on a later date. He also said instead of at least a 1 night stay to be prepared for a stay through the week if not weeks.

So what will he be doing? Adding stents and balloons anywhere and everywhere that he safely can that will benefit Camille. We NEED MORE BLOOD FLOW to the lungs!!! And the only way that will happen is through this procedure due to her anatomy.

To be completely honest... And I know I keep saying this but we are so shocked. To be quite frank and transparent with you I was looking forward to a new hospital and meeting our new cath doctor today. I thought it would be a warm conversation with a routine procedure to follow. Instead a doctor sat down and told us that this will not be easy on my daughter. He was very worried & was SHOCKED in his own words that she has even made it to this point. While this whole time I was under the impression that she was *the most* stable she had been?!

I am just thanking God that we found our way to Dr. Justino & to be quite frank I can't help but think what could have happened had we not met when we did. Had I not asked for second & third opinions. He does MAPCA caths frequently (as frequent as you can for such a rare heart defect) and is the only cath Doctor at TCH that will work on them & he said in 5 years he had not seen a MAPCA child with a heart as sick as hers. Imagine the tears that ran when a highly regarded doctor in the cardiology world told me this about MY child. How do you just sit there and hear that? He was extremely honest and I VERY MUCH appreciate that and I am so thankful for it but I'm just shocked. And I can't wrap my mind and my heart around what I heard. This is the furthest I was expecting to hear today.

Please pray for our family. And pray for Dr. Justino's hands and judgement. And above ALL else please, PLEASE PRAY FOR CAMILLE! She is a God given gift and I believe he has bigger plans for her after this. This was suppose to be routine. I wasn't suppose to hear this. Just please pray for understanding and most importantly for Camille to make it through this! And roaring like a lion when she walks out of that hospital!!!! Please add her to any and all prayer lists. God please! Accepting your will has been the hardest thing I've ever done.

02/05/2016

PRAISE GOD!!!❤️❤️❤️
I just got the phone call that Camille's heart cath will now be May 16th @ Texas Children's Hospital with Dr. Justino! (with a consult May 13th) opposed to a consult July 26th, with a cath the following week.

They said we can expect to be admitted with at least a one night stay, possibly more depending on what they find & if there are any complications in the cath lab.

Thank you all for joining us in prayer. I believe everything is happening according to God's will. I'm still not sure whether to be excited Dr. Justino bumped her up SO quickly, or whether to be concerned. But regardless of the reason I am trusting that God is taking care of her in his perfect timing.

Here are a couple of specific prayer request for the cath procedure:

❤️that Dr. Justino is able to stent and successfully balloon Camille's MAPCAs
❤️that there has been MAPCA growth
❤️that there will be no infections as a result of the cath & that Camille does well with the contrast dye (she had a reaction during her last CT scan)
❤️that her right ventricle pressures aren't as bad as we are expecting
❤️that her triscupid regurgitation is minimal
❤️that her conduit leakage isn't as bad as we are expecting
❤️that the blood flow within her upper lobe of her left lung & pulmonary bed has grown
❤️& most importantly that Dr. Justino, our cardiologist, and hopefully we can get Dr. Hanley on board for doing her next surgery, all feel that her next surgery is not needed immediately and/or relatively soon. We are praying that we have much more time before a 3rd open heart surgery is needed.

And above all else that God's will is done and that he is glorified through all of this.

Though my heart and my flesh may fail me, God is the strength of my heart and my portion forever. Psalm 73:26

19/04/2016

I'm sorry it's taken me so long to update on Camille's appointment Friday but we just found out a lot of big news & I've been trying to get everything a little more worked out before posting.

So here is our big update & bare with me because I don't want to leave anything out-

Camille's cardiologist was able to get a really good echocardiogram done (which is tough to do considering Camille is 2 and a little wiggle worm). From that echo she really feels that we need a cardiac catheterization (heart cath) done now. So the question next is, where? Our cardiologist & cardiology group really think she would benefit from her cath & surgery being done @ Stanford. But there's a problem. Camille's insurance doesn't want to pay for an out of state surgery when we have access to children's hospitals here in our own state. So why do we need Stanford you may ask? Because there is a surgeon there, Dr. Hanley who pioneered & perfected the surgery that Camille so desperately needs. There are other surgeons at hospitals such as Texas Children's who could perform the surgery but Hanley is known for seeing the most complex kiddos with Camille's specific heart defects, and Camille very much fits into that category.

So what have we been doing since Friday afternoon through today? We've been on the phone with different insurance companies, financial services @ Lucile Packard Children's Hospital @ Stanford, and I've been on the phone with the surgical coordinator for Dr. Hanley. And here is what I've found out. Once Camille's heart cath is done and Dr. Hanley reviews it he will then make a decision on whether or need he feels it would be in Camille's best interest to perform the surgery. If that answer is yes, he will then right a letter to our insurance company (with the sign off of our cardiologist) & then we pray that insurance approves the request. I was told that if we are to the point where Dr. Hanley is writing a plead to insurance for us that most requests are typically approved because we are not just going to any surgeon out of state but THE surgeon for Camille's exact heart anatomy. So that is a huge relief that it is very possible and hopeful we can make the Stanford option work but we just won't know until he sees the result of her heart cath.

So what if Stanford doesn't work? Our cardiologist will then basically find out if Texas Children's (in Houston) or Boston children's hospital is more superior than the other for Camille's specific anatomy (Boston also has much better contracts set in place with out of state insurances so it shouldn't be as much trouble as Stanford if that were the case).

But in the meantime she needs a cath NOW so where do we go? Our cardiologist feels that the head of the cath lab @ Texas Children's (Dr. Justino) is incredible & recently had great success with another kiddo with Camille's anatomy. When will it be? I'm waiting on scheduling to call but our cardiologist is hopeful that we will be in within the month. We are also praying that while in the cath lab Dr. Justino will be able to work some magic and balloon some of Camille's collaterals, which would hopefully buy us some more time before she needs her next surgery. But that is not a guarantee.

So when will surgery be? We won't know anything until Dr. Justino is able to really find out what's going on with her heart until in the cath lab. Things could happen rather quickly or we could have some time. How much? We won't know anything more until the cath.

I'm sorry this was so long but I really didn't want to leave anything out and answer all questions and also keep you all up to date on what all will soon take place. Please be praying for our family, please be praying for all cardiologists over Camille's care, please be praying for Dr. Justino & Dr. Hanley & that all of the best decisions are made for Camille. Please pray that everything that needs to happen with insurance works out smoothly. And most importantly please keep Camille & her precious heart in your prayers!💕💖

12/04/2016

I shared in my previous post that Camille's 3rd open heart surgery won't be at her home hospital in Dallas & afterward I felt guilty for not elaborating that decision. So I wanted to take the time to do so now & share our immense gratitude for the man you see pictured with us.

That is Dr. Eric Mendeloff with Camille & I the day before her 2nd open heart surgery. Just thinking of him and seeing pictures we've taken with him just brings me to tears. He saved Camille's life (twice) and was an absolute God sent. I never met another doctor with better bedside manner or who I trusted more. He cares so much for his kiddos & it's clear how much he cares through his words & actions. He checked on Camille day after day after both surgeries & always made a point to drop in. THIS MAN & the entire staff of The Congenital Heart Surgery Unit I have to forever thank for getting us to this point. And the decision to have her surgery at another hospital did not come easy. The possibility had been discussed for several months but was never something I really thought we would pursue. But then several doors seemed to open that really pointed that direction... So our entire family began praying on the subject & continue to do so to this day. We are not 100% sure which hospital we will go to just yet but we do know that at this point Camille could benefit from a surgeon who ONLY sees kiddos with Camille's heart defects. And that is the only reason we have come to this decision.

I felt safe @ Medical City Children's hospital. I wholeheartedly trusted Camille in their care. And they will still be our "home" hospital in case of an emergency. We love every single staff member in the CHSU & as much as I don't want to ever go there again as Camille as a patient I know she will receive the absolute best care.

Courtney Allen & I will still continue to spread the love of The Kindness Cure Project there as well. That is where my heart is. That is where I walked through the doors to go home WITH my baby in my arms & I am FOREVER grateful. Down the road I'm sure Camille will sneak her way in there every now & then though ;) (not too much though, of course!)

WE LOVE MED CITY & if you were one of our doctors, nurses, RTs, or therapists WE LOVE YOU & from the bottom of our hearts THANK YOU!! Hopefully see you guys soon (but just to say hi! No admissions!! Haha)

11/04/2016

I haven't posted on here in awhile. I think mostly because Camille had been doing really well for so long. And also because posting on her brings me back to the most difficult days of our life. But I just wanted to give a little detailed update-

Camille is now 2.5 years old! She is still on continuous oxygen & still tube fed. She is now standing & will even walk if she's in her gait trainer! She love seeing her therapist 6 times a week & loves being outside! She is still the happiest *baby* (ok, I guess she's considered a "toddler" now but she's still my baby! :) All fall & winter she was very healthy but we had a rough month in March. Camille had RSV & an ear infection (both for the 1st time) and had horrible allergies... Which hit her hard from a respiratory perspective. Oh, and her mommy & daddy finally got married in March!! We've enjoyed so many "firsts" here lately & we've just been enjoying every minute of everyday with our greatest blessing & miracle.

But I do come to all of you today asking for prayer. I whole heartedly believe that Camille is here with us today because of the so many who flooded the gates of heaven through prayer. Here are our greatest needs for Camille during our newest season of life:

•We have a consultation with Camille's cardiologist on Friday. We're specifically not even going to have Camille there in order to really discuss all options for the future. I haven't posted about it much (because I wasn't ready) but Camille will have an echo May 2nd. If her right ventricle pressures look worse (be praying for LOW right ventricle pressure!!!) then her cardiologist will want her to go in for her 3rd heart cath. Depending on what they see & what they are able to do intervention wise while in the cath lab then she could have her 3rd open heart surgery as soon as late this summer. We are PRAYING that this will not be the case, but we also do not want to wait too long because permanent damage could happen to her right ventricle if the pressures got to a certain point.

& here's our biggest news- her next surgery will not take place in Dallas. Texas Children's, Boston children's hospital, and Stanford are all on the table. As of right now we feel Dr. Hanley out of Stanford would be the perfect surgeon for Camille's complex heart. We are praying that we are led to the perfect person for Camille. Wherever we do decide though, from that point forward, any intervention, including a heart cath will happen @ that chosen hospital. We will still use our home cardiologist out of Dallas but Camille will also gain a cardiologist from whichever hospital we choose & a new surgeon.

•Camille has gained back the 1.5 lbs she lost during her last sickness. This puts us back @ 23 lbs which is where she has been for far too long (she'll lose, then gain it back, lose, gain it back). Please specifically prayer for weigh gain for Camille. Her GI wants to see her @ 24 lbs by June or she wants to put her on a medication to help her gain weight but it comes with a lot of nasty side effects. She has never weighed more than 23 lbs so we are praying to finally see some new weight gain & to get her stronger!

Please pray that the right decisions are made. The everything takes place in Gods perfect timing. Not too soon but not too late. Please pray that all doctors in Camille's care make the absolute best possible decisions for her. Please pray for weight gain. Her cardiologist said that she would like for Camille to be at least 25 lbs incase there will be a surgery this summer.

& here's a picture with Camille with the greatest granddad, her "favorite", her "Grumps" @ Easter

14/12/2015

Only 3 days left & we NEED to sell 6 more shirts for them to even print! Please help us reach our goal & bring joy (via toys & fun stuff! :p) for children terminally & or chronically sick

Buy a t-shirt to support The Kindness Cure Project. Please share!

23/09/2015

& thank you God for today!! This picture was my 1st time getting to hold her 2 weeks (2 weeks 2 long!!) after surgery

Thank you God for this moment.

23/09/2015

Hey guys! GUESS WHAT TODAY IS?

Camille's HEARTIVERSARY! On this day last year Camille was brought back for her 2nd open heart surgery. And that surgery lasted 12 hours! It was the most difficult day of our lives. Camille was so sick. And for the next few days and weeks to follow Camille fought so hard for her life. And a year later look at where we are today... THE ZOO! With our 1st friend/heart buddy/birthday buddy (yes they were born the exact same day, @ the same children's hospital) Grayson! This is also his Heartiversary week!

PRAISE GOD that we got to spend This beautiful day with our precious miracles!!!!💖💕☀️

09/09/2015

Just wanted to give an update on Camille. I know I haven't been posting as much lately and I just wanted to share a little bit as to why and where I've really been struggling lately.

Every time I share an update I am flooded with love and prayers for our family, but most importantly Camille. And I could never thank each of you enough. I believe with my whole heart that Camille is still with me today because of y'all's prayers.

But something else happens as well when I post updates. I am reminded that my daughter was born sick, is sick, and will forever fight her sickness. Her sickness is a heart that never developed certain anatomy and also underdeveloped anatomy within her heart. Her sickness is weak and underdeveloped lungs. And I have to be honest and say that I have really been struggling with that reality lately. I think it may have something to do with the month of September... Because this time last year we were getting ready for open heart surgery #2 within 9 months. Or if it is because so many of our heart buddies have lost their battle to CHDs. But somedays, and more days than most here lately I don't want that reminder. And then I feel guilty for that because you are the ones who prayed so very hard for Camille and I know an update is important to y'all... And words cannot describe how much it means to me that y'all care. Today I ask that you pray for me and my anxiety and worry and fear.

I also wanted to give an actual update on Camille's health as well! A few weeks ago we saw Camille's pulmonologist and cardiologist. Her pulmonary appt went fantastic! But unfortunately her cardiac appt was a different story. Long story short I'll just ask for specific prayer requests: her collateral arteries! As well as the pressure in her right ventricle, and the leakage in her tricuspid valve and conduit. Also, we saw her pediatrician last week and decided that she needs to see a GI specialist for possible gut motility issues. I will update when we know a little more.

Other than that Camille really has been thriving! She know scoots everywhere! Still doesn't like being on her belly so we don't crawl, nor do we stand or walk but I am just so happy that she can independent move and explore the world! She can show you where her nose is, say Momma and Pupu (for her puppies), she can clap, wave, and play peek a boo with you! We still aren't taking anything orally but from an occupational/physical stand point she is flourishing! It seems like almost everyday now she is doing something new... And I have to tell you there's is nothing that could make a heart happier to watch! She loves exploring and is very curious about the world. She has the sweetest heart and even loves to share everything she can get her hands on with you! I apologize again for the lack of updates and just cannot express my gratitude to you all enough! Please continue to keep Camille in your prayers. He is answering in big ways! Here is a picture from last week

04/08/2015

Just wanted to share and wish the sweetest of birthday's to Miss Haven Grace who is spending her day with Jesus. Haven I never had the privilege of meeting you in person but I know you in spirit and I love you and your beautiful soul. Your grandma has been one of the greatest blessings to mine & Camille's lives. Camille loves her sweet lamb from you. Thank you sweet girl and happy birthday!

https://m.youtube.com/watch?v=Pcc4hN02HZ0

"Sweet Haven Grace" written and performed by Patrick Lissner. Haven Grace Davis ministered to more people in her three and a half years on this earth than ma...