Still Praying for Pee

The last week has been hard on us all. Avelyn was placed on a mechanical peritoneal dialysis machine last Thursday, which was the day I had to leave to return to work. Sean and I had our doubts from the get go as it seemed to not be pulling as much fluid off as the manual set up. As the days wore on the situation got worse. Every time I called the nurses or talked to Sean she was more and more fluid overloaded. By Monday she was really showing changes clinically and wasn't urinating at all. It was bad. So the cycler was abandoned for now. We may try again when she stabilizes more, or they might find a different cycler that will work better for her but in the mean time she'll stay on the manual set up. 

It's believed that she quit peeing because the cycler wasn't allowing her to fully drain her peritoneal cavity before refilling her with another round of dialysis fluid. This caused her to retain more and more fluid which eventually compressed and stressed the kidneys too much. 

The nephrologist ordered a renal ultrasound just to make sure Avelyn didn't have any acute renal changes. The results weren't good. Avie's kidneys are shrinking and have been since at least March. The shrinkage is significant. We were hoping to see signs or renal recovery by now, so the findings are devastating. The shrinkage could be due to her kidneys being very inflamed in March and that receding then scaring over. She could still recover some function of her kidneys, the left one looks a bit better off than the right. 

Either way these findings have hit us hard, especially because it coincided with Avelyn not producing urine for a couple days and with her renal labs looking worse. 

However, we'll hang onto hope because that's really all we can do. There's nothing to be done for her kidneys but to provide her time and pray they heal and regain some functionality-it could take a year or more to truly know how much of her function will come back-if any. However in a few months time, they'll get another renal ultrasound that will be able to show further shrinkage, stagnancy, or growth. We also have to pray that she remains cardiovascularly stable during this time as she cannot afford a heart cath with sick kidneys. It's the riskiest waiting game I've ever played. We're basically gambling her organs against one another. It's a terrible corner to be trapped in and Avelyn's life and quality of life are at stake. It's awful.

More has happened, but I'll try not to sulk about this weekend as much as I did last week and post another update soon. Best wishes to you all. Please keep the peepee prayers coming. She needs them more than ever. 

   

Tomorrow

Tomorrow is a day I have been dreading. I'll have to leave Avelyn and Sean here in Nashville and return to work, 5 hours away in Johnson City. While it's a day that has been lurking for a long time, I have so much to be thankful for.

First, I must acknowledge how blessed I am to work at such an amazing facility full of the most wonderful people. These people, many of whom I don't even know, have donated leave so that I could stay here with Avelyn during our darkest days. Not only did the leave prevent us from having to worry too much about our finances (or me losing my job), but it provided us TIME. I don't think you can ever truly appreciate the gift of time until you're told the life of a loved one is to be measured in days, rather than years.

I could write a novel about how much the gift of time means to me and my family and it would still not adequately discribe my gratitude or thankfulness. The leave my friends, work family, and complete strangers donated, allowed me to stay at my daughter's side when we thought all hope was lost during, what we thought, were her final days. I was able to tell her I loved her, over and over and over, when we were living hour to hour and day by day. 

I got to witness her fight her way out of the darkness when it seemed all consuming and overwhelming. I saw her come back from the brink of death with a furious tenacity that made me more proud and humble than I could have ever imagined. 

I was here for her first wet diaper in weeks (a beautiful 8 ml's), on the very day the nephrologist told me her kidneys would likely never show signs of recovery. 

I was here for her massive diuresis, when she lost more than kilo of fluid in a week's time and her prognosis shifted.

I was here for her extubation, when every one of the providers tried to prepare us for her failure but she prevailed.

I was here to be an extra set of eyes, to study her trends, progression, norms, and to advocate for her tirelessly (or exhaustingly may be more accurate).

I truly believe Avelyn has faired better than she would've otherwise because Sean and I have been here to constantly review, question and participate in her care. Don't get me wrong, I know we have missed a lot. But we have also caught few big things and many small things that could have set Avie back even further.

Anywho beyond the medical side of things, in the last couple weeks I have been able to be more of a mom. As sedatives are weaned, she grows more awake and alert. In the last week, she has seemed to truly know and respond to my voice again. When I talk to her from across the room, she looks for me, and when she focuses on my face my spirit soars. She settles best when Sean and I pick her up and truly enjoys our snuggles. 

I have also been here to help her along in her motor and psychological development. She's doing a lot better with head control, face recognition and, as of today, has started practicing tummy time. 

I was here for all of this because of you all. 

And while I'll likely miss many firsts while away working, I know that's all they'll be. Firsts. Not one and only's. Not lasts. Not one of the few. But firsts. 

I'll see her grow. I'll see her explore. I'll see her love. I'll hear her voice. 

I'll bring her home.

I am trying to keep this frame of thought in the forefront of my mind, but I know it won't be easy. I will be an emotional train wreck every day I am away. The frequency of my calls will likely drive Sean and the nurses crazy. I am not usually an overly emotional person, but in the coming months I highly anticipate breaking down without warning (I'll just go ahead and apologize to my coworkers in advance). 

Yes, the coming days will be hard, but they won't be the hardest. I feel blessed that my returning to work coinsides with Avelyn's recent progression and recovery. I know this is an answered prayer. I also know that while she is still surrounded by uncertainty, and surely has very difficult days ahead, Avelyn is and will continue to be in good hands. Hopefully she won't notice my absence too much, and it's just me and Sean that struggle with this transition. 

In the mean time, if you see me out and about in Johnson City, please be kind. Please don't ask me how I am fairing. I can assure you, it won't be well. I very well may be barely holding it together. Neither of us want to see me ugly cry. Because that's sure to be awkward. As surely as I know it will be difficult, I know I'll be ok and we'll make it through these next couple months just like we have the last six. We won't be unscathed, but we'll survive.

As always, thanks for the support and prayers. Avelyn continues down the road of slow daily progress with a pit stop here and there due to complications. She continues to struggle with medication weans but is toughing it out like only the wonder girl could. Please continue to pray for pee and do your peepee dances. We still believe her little beans will respond and she won't always need the dialysis (though she is tolerating it well). 

We moved to the less acute side of the PCICU!!

Gaining head control is such hard work for our itty bitty.

She now bounces between .05and .025 liters of O2, we're hoping she can be weaned completely off in the next couple weeks.
 

Tummy time wore her out, and also made her mad :/ She didn't seem to care about how well she did with it, she gave me this glare for a good while afterward....

Moving Forward

The last week was full of milestones and more are on the horizon. Avelyn's oxygen requirement continues to decrease, although at a much slower rate than last week. Today she went a couple hours without it all together before falling into a deep sleep and dropping her sat's into the low eighties. While it's possible she may continue to need the 10th of a liter that she's currently on for months or  even years, it's also possible that she won't, or may just need it when she's sick. It's still up in the air....(see what I did there). 

The main progress made this week concerns her benzodiazepine, Ativan. She's tolerated it being weaned substantially. By the end of this week she should be off of it, which is huge considering she was on such a hefty dose after four months of intubation and 6 + surgeries. 

For so long she really needed the drugs but each comes at a price. The weans are really hard on her and it's likely to get worse. She's been tachycardic and uncomfortable quite a bit as the Ativan is chipped away. Withdrawals increase her the work of her heart, which increases her oxygen demand and work of breathing-and that's really over simplifying it. 

It's hard to watch her suffer so much from something so seemingly trivial. I can't wait for her to be past withdrawals and off all of these substances. It'll be so wonderful to see her little personality without it tainted by detox, sedatives, and delirium.

Anyway, after the Ativan is weaned away, the plan is to begin to chip away at her Precedex, which is another sedative she needed while intubated. She's on a super high dose of the precedex and it'll take a long time for it to be weaned safely, it could very well take a couple months. Since it's an IV drip- Avelyn can't leave the PCICU until she is weaned off of it. Meaning she'll be here for quite some time. 

She has also made some progress with peritoneal dialysis. She is nearly at her goal fill volume which will allow her to start using a cycler, which is machine that performs the dialysis rather than it being done manually by the nurses. She'll have to be on this machine and tolerating it well to go home. She'll also need to be tolerating not being on continual dialysis like she is now. Getting to that point will likely be another lengthy process with innumerable variables. 

In other news, her little kidneys have yet to declare themselves. The nephrologist we spoke with today suspects we should know if her kidneys will have any recovery in about six months, but the likelihood of that happening lessens with the passing of each month. Please join me in praying for renal recovery and pee. She is peeing some with the help of very strong diuretics but currently the her kidneys are likely working at less than 10% of the capacity that she needs.  

Lastly, as the sedatives are weaned Avie spends more time awake. She's started to try doing actual baby stuff like chew on her fingers and hold her head up. She's got a long way to go and is giving it her all in physical therapy and with the speech therapist (working up to relearning to suck after her long intubation). Hopefully as time goes on our worries will continue to be in terms of her catching up to her peers in development, rather than on the life threatening issues. There are still a lot of dangers she has to surpass and overcome but we know she can do it. As we've heard from multiple sources, she currently the shining light of Vandy's PCICU. 

Much love to you all. I'll update again soon! There's big things on the horizon! 

 

 

Strides

In the last week Avelyn has made stunning progress from a respiratory standpoint. She has gone from 20 liters of flow at 75% O2 via vapotherm to just 1 liter via nasal cannula. She has maintained stable blood gases despite the intensive weans meaning her gas exchange is steadily improving. She isn't showing signs of labored breathing and looks fairly comfortable in her ventilation. It's still up in the air if she'll need oxygen for home use. No one really knows how or at what rate her lungs will recover after four months of intubation, but for now she's doing well. 

Her kidneys still aren't showing much signs of improvement but they aren't getting worse either. She is responding well to peritoneal dialysis and for that we are blessed. She has a long way to go before she reaches the point that she is ready for the cycler, which is a machine that performs the dialysis. It requires her to be on double her current volume of dialysate, so she'll have to work up to that. It'll take weeks, if not a month for her to get to that point. In the mean time she'll need to remain in the PCICU on manual dialysis. 

Another aspect keeping her here in the PCICU is her need to detox off of a sedative called precedex. She's been on a very high dose of this medication ever since she was intubated at the end of January for endocarditis. When the dose is weaned her body reacts horribly. One of the attendings here told us that the drug has never been studied in children for chronic use. She's likely not the only one who's reacted this way, but given the rarity of circumstance, it's not something the providers have much experience with. Saying that, she'll need to stay in the PCICU until she can be weaned from this drug and that will take a couple months at best. And while I hate that she'll be in the hospital all summer, this drug  affects her that drastically. It's safer to wean it slow, and after nearly 6 months here, a couple more seems like a drop in the bucket.

Also on the horizon- Avelyn still needs a heart cath soon to balloon up her pulmonary arteries. The PAs are small and pumping blood into such small arteries puts a lot of strain on the right side of the heart. A recent echo showed positive signs that her heart is currently tolerating this extra strain alright, but it's not something that should brew. However she cannot go to the cath lab until she is solidly stable and her kidneys have "declared" themselves (meaning she'll regain function or not). 

So in short, we are blessed beyond measure but in this for the long haul. Avelyn is recovering and we are getting to snuggle her close. The feeling of holding and rocking my baby after longing so desperately to do so for so long is indescribable. I was afraid she would have an adverse reaction to human contact after lying in bed with mainly negative touch associations from getting the care she needed. However she seems to have missed it. I have cried with joy too many times to count in the last week due to knowing she accepts and likes being loved on. I was truly terrified she would be revolted.

She is only just rediscovering her voice, but she is learning that even the faintest whimpers will result in snuggle time. Those faint whimpers, while so sad and heart breaking, are music to my ears. We went months without hearing her voice. It was a possibility that such a long intubation may have paralyzed her vocal cords. But it didn't. Each day she regains more function of her vocal cords and rediscovers her ability to make sound. It's so special to watch her figure it out. 

In the last couple weeks, we have been more than happy to oblige her every desire after four months of hell. She is rocked and bounced most of the day and it's doing wonders for all of our hearts. 

Thank you all who have prayed and sent us love and support. Our Avelyn is recovering and we could not be more ecstatic or thankful. She still has such a long and uncertain road ahead of her. As I have said before, she'll never be out of the woods but it looks like we'll get her home to the mountains. With that in the forefront of our minds, a couple more months here seems more than doable. 

As usual, much love and best wishes to you guys!

 

 

 

 

 

 

 

Best Interests

The last week has been crazy. I guess it started last Friday with the pulling of Avelyn's chest tube. For those of you who don't know the significance of this, IT's A HUGE DEAL. Avelyn has battled chylothorax for months. There were many days that I thought we would lose her to it. 

I still vividly remember calling my pawpaw in hysterics in early April. I had just been told there was simply nothing that could be done for her but to sit, wait and hope it got better. I was beside myself. Who wouldn't be after months of seeing their child slowly waste away due to pouring vital nutrients from a chest tube? My sweet pawpaw has always been my go to Mr. Fix It, and while I don't think he alone fixed Avelyn's chylothorax, I know his prayers and encouragement gave me strength to continue. 

So anyway, her chest tube was finally pulled. And surprisingly after months of hoping and waiting, when the day came, I begged them not to pull it. She had been having chylous output again and I was (and still am) extremely nervous she'll get a chylous effusion. See the body cannot reabsorb the fatty chylous output like it can blood or serous drainage, if she gets an effusion she'll need a new chest tube implanted. So far she is doing extremely well with it and for that I am so thankful. 

Then Saturday morning rolls around. We're not even 24 hours out from the pulling of her chest tube, and I am told she's to be extubated. I was floored. Terrified. Ecstatic. Ok quite honestly, I didn't know how to feel. While I knew she was on minimal ventilator settings and that extubation was on the horizon, we weren't expecting it until this week. When the time came Sean and I were in a surreal state of anxiety and excitement. Extubation?! 

We've had been waiting for this day since she was first intubated on January 29th for endocarditis. We prayed for this day. Hoped for it. Longed for it. We were told on multiple occasions it may never come. We were told to expect failure but we hoped for the best.

We spent the morning telling her how much we believed in her; how proud we were of her; and how strong she is. She looked so good, she was playing and interacting with us all morning. Then, seemingly so suddenly after four long months, the time came. 

I didn't know what to do with myself. Sean and I didn't call or tell anyone she was being extubated, partly because it was so surreal and partly because we had been told so often to expect failure. But we hoped. We prayed. We paced. We fidgeted. I was a bundle of raw nervous energy. She has been intubated for four months. She doesn't remember life without a ET tube down her throat. Sometimes I too wondered if I remembered her without the ET tube. It's just been so long. To complicate matters, in all that time her little muscles have grown deconditioned. 

She was extubated to a BiPAP, which is basically like a CPAP that provides extra support when she initiates a breath. When the doctor came in to tell us she succeeded in extubation, I can't begin to describe the joy, relief, and fear that consumed us. Mind you, we were still being told to expect failure in the first 24 hours. The providers were expecting her to get tuckered out and need reintubation. As the hours passed and her blood gases looked good, we saw providers dancing in the halls. Everyone was (and still is) shocked. Nurses are still stoping in "just to see her" without the tube. That Saturday the whole unit seemed to be in celebration.

For the first two days she did great. Initially, she did much better than anyone was expecting and then things started to turn. Her secretions started to thicken and turn darker. Sean and I knew she had an infection brewing but her lab work looked alright, so the team held off on antibiotics despite our requests. Then BiPAP function began to cut in and out. Meaning there were times that Avie wasn't getting the extra help when she took a breath and other times it was providing rapid bursts of air that she didn't need.

Sean and I brought it to the team's attention right after it happened the first time. When the respiratory therapist came into investigate it was working properly (figures). Then as time went by it got worse. It would cut out more frequently and for longer periods of time. Avelyn progressively started to look worse and worse.

By Tuesday night, I felt a clear pattern had established itself. I asked for her to be switched to a high air flow nasal cannula. While this sort of intervention is technically less support than a properly working BiPAP, I figured it was worth trying. The attending that night didn't think it was a good idea. 

By Wednesday morning Avelyn was struggling, like really struggling. At this point her BiPAP function was cutting in and out frequently no matter what the respiratory therapists and nurses tried. Again, Sean and I asked the morning attending to try vapotherm. We were told it wouldn't provide her enough support and that the BiPAP would be better for her. I argued that a working BiPAP may be better, but that this one wasn't working. He agreed and to this, and to his and the respiratory team's credit, they tried. They worked for hours trying to get the BiPAP function to work. They tried different ventilators, different masks, and in the end a nasal pharyngeal tube. 

During all these attempts Avelyn struggled to breathe. She spent hours struggling with each breath. She was suffering and it was awful. Finally, with the NP tube in just the right place and at just the right angle, it worked but I knew in my heart that it would be short lived. As I figured, two hours later we were in the same boat. Avelyn was stuggling and suffering yet again and Sean and I weren't having it anymore. I was to the point that I was ready for her to be reintubated. At least then she would be able to breathe. Allowing her to suffer like that any longer would have been cruel. When the night attending came in, I pleaded with him to try her on the high flow delivery system, called vapotherm. He thought about it and with an air of "well she couldn't do much worse" agreed. 

Once she was on vapotherm her breathing got better nearly immediately. She wasn't working nearly as hard for each breath. She looked comfortable, completely exhausted but comfortable. After and hour the nurse got a blood gas, and to everyone's surprise it looked really good (considering). It looked better than any of her BiPAP gases, even when the damn thing was working. After one of the top ten worst days in Avelyn's life (which is really saying something, given all she has been through), all three of us could finally breathe easy.

It was a terrible, awful day and I believe a lot of it could have been avoided. While that makes me unbelievably angry and sad, as I am sure it does you all as well, I've had to take a step back. Sometimes, especially in situations such as this, it's easier to be angry. It's easier if you can place blame on someone or something. To look at the situation from another's point of view is hard, and that's without the added complication of watching your child suffer for hours. But I ask you all to not blame the doctors who didn't switch her to vapotherm when I initially asked. To give them credit, the request likely seemed absurd. Here I was asking for my baby, who was in respiratory distress, to be given "less" support. If you think about in those terms it's crazy. She could've done worse on vapotherm. It could've led to reintubation. The doctors who said 'no' to my requests for vapotherm did so because they thought it was in Avelyn's best interests. 

Do I wish they would have considered my plea and reasoning before saying 'no'? Heck yes! 

Yet, I'm sure parents ask them to do crazy things.l all the time.

Am I more informed than many other parents? Probably. 

Do I wish this was taken into account before they just tell me 'no'?  Sure I do.

But do I have a medical degree and years of ICU experience? Nope, not even close.

Also, do I think they were being neglectful? Not at all. I think they were being cautious. In many aspects, I respect that. Don't get me wrong, I am still upset that my baby struggled so long but I understand the doctors' reservations. 

Being an advocate for Avelyn isn't easy. Sometimes it's a battle. It is exhausting to continue to advocate for what we believe is right even after being told it's a bad idea. 

However, it's episodes like yesterday's that break our hearts and renew our vigor. Avelyn is fighting for her life and Sean and I can't afford to merely be observers. Our girl deserves our best and that's what we try to provide her. 

So in short, this week was hard on our girl but as usual, she persevered. She continues to amaze and surprise everyone with her tenacity and wonderous spirit. She's still on vapotherm and tolerating it well. She's also still fighting a respiratory infection that we hope will start to clear soon. Please keep her in your thoughts as she continues her war against CHD. She still has such a long road ahead with so much uncertainty. Yet I continue to believe if any baby can overcome these challenges-it's our wonder girl. 

Much love to you all. Thanks for checking in on us and for supporting us through Avelyn's oddessey. We surely would not have made it this far (and remained remotely sane) without your love. 

I've included photos of Avelyn's siblings because they've been troopers too and I miss them terribly. We look forward to the day we're all together again!

Hope on the Horizon

The last week has been hard. The world lost yet another precious baby to CHD. Olivia Grace was Avelyn's neighbor who fought and overcame so many challenges during her 4.5 months on this earth. She could light up a room with a smile and did so frequently. She had the longest eyelashes and wavy ginger hair. She loved to kick and dance for her family and even did a few peepee dances for Avie.  

Her mother advocated for her with a tenacity like I've never seen before. Olivia was born into such unfair circumstances but she made the most of them. In her short life she touched thousands of hearts. After being next door to them for months Sean and I grew to love Olivia and her family. Her fight became our fight, and I know her momma and grand momma would do anything for Avelyn, just as I would've for Olivia. The loss of Olivia was and is felt acutely across the unit, just and those before her. In the five months we've been here, the unit has lost seven children. That's seven lives cut short and seven families torn apart. Each child lost is a tragedy keenly felt. It's awful. So awful.

Three weeks ago we were trying to prepare for our sweet Avelyn to be among that number. I use the word "prepare" so loosely. There's no way to prepare one's self for the loss of a child. How could you? While God has seen fit to continue to bless us with our little Avelyn, we have seen dark days. Days where Sean has literally had to pick me up out of the floor when my legs could no longer hold the weight of sorrow. Days when we discussed how we would memorialize our daughter when the time came. Days when hope was but a glimmer in the darkness. When we thought that glimmer was all but lost, it started to grow and she started to improve. I know Olivia has had something to do with it. As I told her momma, instead of resting behind the pearly gates, she went straight to work for her friends.

However, despite Avelyn's improvement over the last few weeks, we have no guarantee of ever seeing her grow into a strong young woman, go to kindergarten, see her first birthday or even ever hearing her voice again. Each night I pray for such things, but I am sure Olivia's momma did too. CHD is so very cruel.

I am not going into all of this for the heck of it. I just want to convey that our children are more than statistics. They are children first and foremost. Children- who've been stricken with the misfortune of being 1in 100. 

I can't remind the world enough that 1 in 100 babies are born with Congenital Heart Disease. And while most forms aren't as severe as Avelyn's or Olivia's, 1 in 4 born with CHD need some sort of surgical intervention to survive. 

If Avelyn was born 15 years ago, odds are she wouldn't still be here. The surgery to unify her MAPCAs was only first pioneered in the last 20 years. I owe my daughter's life to recent medical research, all of us heart parents do. I can't stress enough how valuable congenital heart research is. My daughter's survival, growth and development are all dependent upon ongoing scientific research. Please spread the awareness about the frequency and horrors of CHD. Please tell people of Avelyn's odyssey. Tell them of Olivia or Emma, or the countless other babies who have been lost to this disease. Spread awareness that with more research, more can be done to save these babies. Please look into the  http://www.childrensheartfoundation.org/ to learn more about CHD and donate if you can. Also look into joining "Team Avelyn" for the Nashville Congenital Heart Walk on Saturday June 4th. Every little bit donated helps and goes towards saving the lives of children who fighting legendary battles. http://events.congenitalheartwalk.org/site/TR?fr_id=1503&pg=entry

Avelyn Update:

Avelyn is making progress! It's slow progress, intermingled with setbacks but progress none the less. Her ventilator setting have been weaned over the last week and she seems to be tolerating it well. While her lungs are still not as efficient in gas exchange as a normal kiddo's lungs, she has made some great strides.

She is currently being weaned off a couple sedative drips so she will better tolerate extubation. Getting her tube out with the drips in place may be dangerous as she could get too sleepy. The withdrawals have been bad and difficult to watch. But at the same time, narcotic weans mean she is in a much better place than she was just a few weeks ago. That's what I have to keep telling myself anyway. Thinking of how far she has come, makes it easier to see her struggle with the weans. 

Her kidneys are still in rough shape. She doesn't pee much but she is still peeing some. The biggest disappointment recently has been the return of the chylothorax when she resumed full fat breastmilk. As of now it's still low volume output but it seems to be trending up slowly. I don't know. I guess it's a wait and see kind of thing as to when the chest tube can come out, and what the plan for full fat verses skimmed. The body cannot reabsorb the chylous output like it can blood or serous fluid. So if she continues to have the fatty leakage and her chest tube is pulled it will build up and collapse her lungs. That would be bad and she'd need another chest tube put in. That's not something I want to chance. As for now I am advocating leaving the chest tube in place, it's already been in for months anyway. I don't see the point in rushing into pulling it out.

So that's where she is and where we are. We upon the cusp of uncertainty and gaze upon a future that terrifies and excites us. Big days are ahead. Avelyn could regress or not tolerate the coming interventions at anytime. Or she could do well. We pray for the latter, and hope you will too. 

Best wishes and love to each of you. Thank you for all the love, support , thoughts and prayers sent to us and our dear Avelyn. 

She may be small and her heart may be frail, but she has the spirit of a warrior.

    This last photo is of my precious friend Laura and her beautiful Olivia Grace, just days before Olivia gained her wings. I will always love and miss you sweet Little Livie.

The Agony of Limbo

The last few days have been yet another roller coaster ride. Avelyn made strides of improvement Thursday, Friday and Saturday. She got just over 700ml of fluid off in just three days. We were all quite astonished and despite our guarded hearts, our hope soared. 

On Sunday her dialysis was changed to a lower concentration of dextrose, due to the hospital running out of the higher concentration. (The higher dextrose concentration the more fluid is pulled off with the dialysis.) The team knew that there was a shortage of the dialysate on Friday, so it wasn't like running out was some massive surprise, but that's how everyone reacted. Also a different nephrologist came on Sunday. I don't believe the off going nephrologist communicated well to the on coming nephrologist. Avelyn's need for diuresis is dire, multiple organ systems and her life in general depend on her getting the extra fluid off. It's top priority right now.

However, the on coming nephrologist saw that the higher dextrose dialysate was low in magnesium and calcium-which are electrolytes that often build up in individuals with chronic renal failure. She thought using that would cause Avelyn's mag and ca+ levels to drop-which it very well could, but hasn't. She had been on this dialysate for days without issue, she had done extremely well on it. But alas, the nephrologist discontinued it and all of Nashville was searched for a dialysate bag with a high concentration of dextrose and normal concentrations of magnesium and calcium. None were found. So for two days she was on the low concentration of dextrose. Meaning for two days she did not pull any excess fluid off, and today she was positive 100ml. The significance being, she not only did not make progress but she regressed. She didn't just regress from a fluid over load standpoint, her entire clinical picture is worse. Her heart function, her respiratory function and ventilation,as well as her agitation level- all of it is worse. 

While it's not as bad as it was Thursday, it's a significant regression. A regression that Avelyn could not afford, especially due to lack of communication and logistical nonsense. 

Frustrated does not discribe how I feel about all that's happened. I am sickened, devastated, and angry but that still doesn't adequately describe how I feel. I have been watching Avelyn struggling to breathe today. She is working so hard that her temperature and chest tube output are both up. Her ventilator settings, that were just weaned a little yesterday, are back on nearly highest settings. It's awful and the fact that this could have been avoided and she could have made more progress only makes it worse. Avelyn can't afford these types of failures, because despite how the team has tried to convince me otherwise, that's what this situation is-a failure. It's a failure in doing all that is possible to help her. It's forcing her to struggle unnecessarily, something Sean and I have promised her we would prevent.

On Friday we decided to make Avie a DNR. Meaning of she were to go into cardiac arrest we have asked that the team not do CPR on her. As much as we love and adore our daughter, we think this is for the best. In our minds, passing away would not be the worst case scenario for our precious baby. Exposing her to further pain and suffering would be. She has had her chest opened four times now, with the most recent being only two weeks ago. Chest compressions on an unstable and unhealed chest would cause trauma and pain. So much pain. It's a struggle to treat her gas pain, let alone that of flail chest or broken ribs. Plus, the episode would only make her prognosis worse. She would likely receive more brain and organ damage than she has already sustained. It just wouldn't be fair to force her to endure such pain for a life also filled with pain and suffering. 

Deciding to make her a DNR was the hardest thing Sean and I have ever done. We did it because we love her, not because we are giving up. We want more than anyone can imagine to watch our baby grow, but are not willing for her to suffer for our selfish desires. We continue to stand by her side, cheering each accomplishment and advocating for her as best as we can. 

She continues to fight with unbridled tenacity. Her spirit continues to amaze me, and I am so proud to be her mother. If any baby can over come these circumstances it's my Avelyn. 

Thank you to all who have prayed for our dear Avelyn. The progress she has made is encouraging but please keep the prayers coming. Her survival and recovery are dependent upon a miracle. We are blessed to have seen her come this far but she still has many mountains to climb, with each being higher than the last.

 To all that have given aid to us, thank you. Your aid has allowed me to stay here with my baby. I will never be able to adequately describe my gratitude or thank each of you enough, but I will spend the rest of my life trying. Your generosity is awe inspiring and more appreciated than you will ever know. From the deepest most part of this momma's battered heart, thank you. 

 

Avie isn't a fan of bright over head lighting ;) She seems to actually like these glasses her Grammy got for her. Plus she looks pretty darn cute if I must say so myself!