Ink Through Ashes

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A legacy to remember, and we have proof!

As I mentioned in a previous post, the paper our fetal specialist, Sina Haeri, wrote about the amnioinfusions we had during our pregnancy with Conley, was recently released. It was also co-authored by our nephrologist, Kartik Pillulta. And get this, the DAY the editor gave Dr. Haeri the green light to publish the paper was March 18, 2016 (though it was officially released later). But, seriously?! I do believe in coincidences at times, but not this time. This meant something; no doubt. That same day our beautiful Conley became an angel at 2AM, he started helping others on their journey. Conley's legacy lives on, as will his buddy's Barrett, who is the other kiddo discussed in this paper. Barrett is still doing well on peritoneal dialysis and is on the transplant list!!

A picture of Dr. Haeri and his boys, Barrett and Conley.

These kids (and doctors) have done, and will continue to do, amazing things for our medical community. Below is the link: 

Serial amnioinfusions for fetal pulmonary palliation in fetuses with renal failure 

To give you some background for the paper, since it is definitely written for the medical community, I found some excerpts from previous blog posts. If you want more information, feel free to read back to earlier blog posts. 

December 22, 2014

During our 20-week anatomy ultrasound, we found out that Conley was diagnosed with a bladder obstruction called a Posterior Urethral Valve obstruction (PUV). Initially, his bladder was full, but he was unable to urinate, leading to a back-up into his renal system, mainly his kidneys. Over the course of the first couple weeks, we found out that Conley was actually able to urinate, and that the obstruction was considered "partial." However, it had appeared that the damage to his kidneys had already been done, as he was not creating new urine at all. Starting at 20 weeks, babies need to urinate in order to produce amniotic fluid; however, given that Conley was not producing urine, he was unable to create amniotic fluid, which is needed for growth and lung development. At this point, we knew that Conley had some kidney damage; however, the extent of the damage could not be adequately measured until his birth. We knew that there was a possibility for dialysis and eventually a kidney transplant. 

Given the complications with low amniotic fluid, I had to be monitored on a weekly basis, having multiple ultrasounds to make sure that Conley was doing okay. I also had several (5 to be exact) amnioinfusions, which is a process where saline is injected into my uterus every couple weeks in order to make sure that Conley had enough room to continue building his lungs and growing adequately. Three of these procedures included spinal blocks, as any one of them could have induced labor. We are lucky that every procedure went well, and we were able to give Conley the tools he needed to build his lungs, while all along allowing me to continue living life at home. I had my last amnioinfusion at 30 weeks. It was not possible to continue the amnioinfusions past this marker as the risks were greater than the benefits. It was a blessing that we were able to do this much for Conley, and mommy was able to stay at home with the boys and continue "regular" life as scheduled.

February 19, 2015

Oh, and one more HUGE victory. Conley was finally taken off oxygen support and is now breathing room air on his own. This is such a great step and very comforting for momma as this is the reason I had all of those procedures (amnioinfusions) throughout my pregnancy. Hopefully, we won't have to worry about his lungs anymore unless an excess of fluid starts to put pressure on them. The doctors were saying that it was good that Conley had a "good set of lungs" so that he could maintain some healthy respiratory status when he was overloaded with fluid. Phew. Great news. He is breathing comfortably now and it is amazing to see his beautiful face now. Though, he still loves his pacifier so much that he won't give it up unless he is eating!

Holy crap follow-up

A follow-up to my recent blog: please, please don't think that you said or did something wrong, and by all means do not step back or stop contacting us. The last thing I wanted to do was discourage people from reaching out. If we aren't ready to talk, or it's one of those bad days, we won't respond right away. We will when we are ready. I truly just meant to be a voice for someone in my situation; to share all the things we feel and what we go through. It's overwhelming trying to keep everything together. As I said, anything is better than nothing. Even if anything is wrong. But anything can't be wrong if you are just yourself. And honestly, if I was in your position, I wouldn't know what to say either. Or what to do. But, what I would hope is that all I have to do to is be real and genuine. To be honest and caring. Because that's all anyone wants.

Holy crap

I know it has been awhile since I blogged. To be honest, I have started and deleted posts over and over because none of it sounded right. None of the words captured what I was truly feeling or experiencing. I wish I had something profound to say, or some eloquent way to express how this past week has been, but I don't. What I do have are a series of moments that I think are worth sharing, because they capture the complexity of this journey we are on. Every happy feeling eventually is overshadowed by sadness or pain. But then every moment of heartache is met with joy and comfort. This cycle happens literally every moment. It hits you from no where and you cannot stop it. Things that would seem to make me sad actually leave me hopeful, and simple thoughts end up being the most catastrophic. To make it simple, here is what this past week has captured.

• Guilt. There is a lot of guilt. Guilt over everything and anything. I somehow find guilt in every situation; every moment. From not returning a text from a close friend to feeling relieved that Conley is no longer suffering. My therapist asked me to start writing down things that produce guilt, and that list keeps growing. Sometimes the guilt drives me to be more productive, like going to yoga, crossfit, or meeting up with a friend for lunch. But sometimes, it drives me to isolate and withdraw. I have found myself at times sitting down on the couch or laying in bed just starring off into space or being in my head. But regardless of what is happening, guilt seems to be the driving force. Even this blog post.

• Obsession. Tons of obsession. Replaying conversations in my head from the last week of Conley's life. Replaying the moment he woke me up in the middle of the night so I could kiss him one more time. Reliving conversations about what happened, and how fast things changed. Wondering how he was so healthy and stable, and then out of no where, infection, cancer, clot, death. How cancer and chemotherapy were supposed to be "easy,"  and we were "lucky" that it was liver cancer. Obsessing over stupid things, like what to do with all my left over frozen breast milk or how can I make the most of Conley's medications before they expire. Obsession over everything.

• Worry. This one is huge. My biggest fear and worry is that I will forget things about Conley. I watch videos of him constantly so I won't forget him. I go into his room every day, sometimes for hours, and sit there with my eyes closed imagining him. I sit on the rocking chair pretending to hold him, like I did the last night before we were admitted to the hospital. I imagine his smile, his laugh; everything. You know those things your child does that you love the most - to the point where you prompt them over and over just to see it. So you can capture the perfect video of this "thing" they do that you love. I loved when I asked Conley if he wanted me to pick him "up," while pointing my thumbs in the air. He ALWAYS smiled so big because he knew that he was going to be held. He always wanted to be "up." I replay this in my mind over and over so I don't forget. I worry I will forget this. I worry I will forget the way he looked at me, and how he was happy. I worry that the last four months of hospitalization, surgery, treatment and medical intervention will over power the good memories of us being home for eight months.

• Tricks. Grief plays so many tricks on you. There are moments that I walk past Conley's room expecting to see him in his crib even though I know he is not there. Still, I walk into the room and look in his crib. It's empty. I know it is. But for a split second, I think he is there, waiting for me to say "up" so he could smile so big. I expect to have our nurse, Kyle, walk through the door in the morning so Choice could run up to hug him. For a split second, I think about leaving the door unlocked for our night nurse.

• Awkward conversations. These happen a lot. Sometimes I avoid people intentionally do I do not have these conversations. All those sweet, caring people who ask how Conley is doing because they know his story. Like my hair stylist, the new neighbor, our pharmacist, grocery store bagger, etc. They all know me. They know Conley and our story. And then they ask how he is doing. Talk about a change in vibe in the conversation. Or running into people who already know the end of the story, and they give you the look of "I'm sorry" and even sometimes pity. The elephant in the room. And I say, I'm okay. We are okay. Or the people that say, "Oh, you're Conley's mom?" They have heard about him, about us, but have never met me. And the question, "how many kids do you have?" Well, that depends who is asking. Did they know about Conley, or is this the neighbor across the street that have only seen one child around our house?

• Triggers. Oh yes. Constant triggers. Songs. Specific words. Calls from insurance companies or doctors who want to talk about Conley. Mail for Conley. He always got tons of mail. Those triggers are manageable and expected. But others; unknown triggers are awful. For example,  the other morning on our way to breakfast, Jonathan, Choice and I were rear ended pretty hard. My first thought - laughed out loud and thought par for the course. This has been our life. We have been passive receivers of shit like this for awhile now. Given news and circumstances that had to be dealt with; not questioned or changed. Just accepted and handled. We became pretty good at adjusting and rolling with the punches. Just like getting rear ended. Second thought - tears and hugging Choice. And then feeling bad for the guy who hit us. If he only knew what we had been through.

• Rebellion. There were always so many rules for and with Conley. Like washing hands constantly and using paper towels. Only paper towels. No bath towels because that brought bacteria. And bacteria meant infection. I find myself purposefully using a hand towel because I can. Oh, and I went grocery shopping at 6pm on a Monday night. Unheard of. And taking Melatonin or drinking wine. Amazing. I haven't been able to take sleep medication or drink multiple glasses of wine for a long time because I needed to be on call, and alert if something happened. Or if I needed to drive somewhere.

• People get real. True colors come out in time of loss and grief. Let's face it. These types of situations are hard for everyone. What do you say? Do you say anything? What if you say something wrong? I remember being that person and hearing of a friend's child that passed. It is a tough situation and words can be scary. Anything is better than nothing. But, sometimes I think people forget it was my child that died. My child. My every minute of my every day. My life is starting over. So, I get some leeway and I get a break on things that may have been said or done. And if that is not okay with you, I don't need you. My therapist told me that I can make a protective barrier around myself, and encouraged me to not let things or people in that may burden that protective barrier. That is hard for me because it leads back to #1 on this list: guilt. But, I am working on that. On the other hand, wow. So many people have done more for me, and more for my family, than I ever could have imagined. Selfishness and selflessness are truly seen in these times. They always say people you think would be there, are not; and those you least expect, are the ones who save you. 

• And lastly, love. So much love. I've hung out, met up with and talked to more friends and family these past two weeks than I have in the past two years. I've had deeper conversations about things not related to Conley's care. I've learned new things about good friends that I missed out on. Love for Jonathan and for Choice. Choice loved Conley so much. He knows something is going on. He talks about Conley's tree and kisses pictures of Conley. Picks up Conley's rabbit and hands it to me because he knows I snuggle with it at night. He sits in Conley's room sometimes for no reason. And he loves watching videos of him. He is aware that we have had way more visitors in the past month then in his whole life. And then there is Jonathan. He gets me right now. And he supports my grief, or whatever it is that I'm feeling. Sometimes I just lay in bed under the covers for hours trying to hide from reality. Sometimes, he lays with me. But sometimes, he does not have this option. He keeps working for our family and supporting whatever decisions I make. He is letting me be me, and letting me figure this out. Choice, Jonathan and I have been sleeping in our bed together for weeks now. Never what I would want or even imagined that, especially with all the sleep training we did. I keep thinking how we need to "get back on routine" and start a new schedule, but then I wake up and see those two next to me (often times Jonathan is snoring and Choice has his feet in Jonathan's face), and I feel happy. This huge house and we all stay in one room together. And that's okay for now. 

On a side note, I will be transitioning this blog to a new name to move away from Conley's story, and into a new story about myself and our journey through this process. I would love to hear some ideas of what to call it!! :)