There are few stages in our NICU time that I would describe as being sad or depressing. After the initial days, we had truly settled in there and my memories of those 8 months are of friendships, support, laughter and growth and healing for the babies. There were exceptions, though, of course. The week after the babies had their kidneys out and started dialysis was an overall stressful and sad time for me. Surgery recovery was dragging along, with Max continuing to have multiple Max Attacks a day requiring bagging. He was objectively doing as well as we could have expected for so much change but our happy relaxed boy had yet to return and it did take a toll watching his daily color changes and discomfort. While Addie had initially seemed to cope well with surgery, dialysis seemed to be leaving her puffy and tired and void of her usual smiles and playful spirit. The days seemed to stretch on with neither baby being happy and with the hourly turning of clamps and draining of water that made dialysis seem, while not overly dramatic, incessant and constant. They were requiring around 20 hours of dialysis at this point so it seemed very consuming. We knew this would be our reality until transplant so the ever present bags of sugar were doing little to brighten my mood.
The darkest cloud over me during this week though was still my grief over their reported deafness. The tears had long dried up and been replaced with a numb ache and a cloud of discontentment. There was lots of talk among the doctors trying to understand why and the best explanation seemed to be that the aggressive IV medications they had been on for months had taken their toll on their hearing. I suppose that explanation had its comforts in that at least it was not a new totally separate issue that affected them. Furthermore, those medications had certainly saved their lives so there was no regrets or what ifs associated with it. The medications had been necessary. The hearing loss was merely a cost of saving their lives. Now that concept brings lots of peace to me but in that week when the information was so new, it did little to make me feel less sad for my babies and myself. Some nurses tried to talk to me about sign language or tell me cheerful stories about deaf friends but that only encouraged me to dwell on it more. It was clear my heart was broken over it and it was tainting my usually positive demeanor, which no doubt everyone could see.
I remember it was about 8 days after their surgery when we had this Saturday that just felt defeating. Max continued to turn blue and be unsettled and Addie's mild unhappiness had escalated to her being unusually fussy and sad the entire day. I updated Facebook more sparingly back then than I do now, usually only with cheerful photos to try and reassure everyone we were okay, but that day I put a post up asking for prayer because we had just had a rough few days. A friend of mine later said that she knew it must have been rough and I must have been struggling because such candor and honesty regarding the difficulties of our situation were rare then.
Unfortunately, things were not going to start getting better any time soon. The next day was actually Al and I's anniversary and Addie was more miserable. She seemed quite lethargic and her skin had a greyish color. She wasn't smiling and although she wasn't screaming, she would let out the occasional sad whimpers. Her vitals seemed stable enough at this point- she had no fever, she was maintaining her oxygen levels and her heart rate, though somehow elevated, didn't seem to be too troubling given we knew she was uncomfortable. And yet everyone who knew her and saw her knew something was very wrong. Al and I had plans to go for a nice dinner and celebrate our two year anniversary but neither of us could reconcile celebrating when sweet Addie was so clearly miserable. We grabbed a quick dinner and bought a box of Sprinkles cupcakes and both spent the night at the hospital, holding her and hoping we were providing her some comfort.
The next day was the fourth of July and Addie was progressively worse. Her whimpers had become more frequent and they now sounded like sad kitten mews- like she somehow lacked the energy to cry but had to let us know she was in pain. Her breathing had a grunt behind each breath and while she still had no fever, her heart rate and breathing rate had both gone up considerably while her blood pressure had dropped. It was now undeniable something was very wrong and the doctors ran the full range of tests. The immediate concern was some sort of bacterial infection, perhaps pneumonia? that was making her breathing more difficult and causing her general misery. But, the blood work that came back all seemed benign for such markers. There was a lull at that point, nothing they had feared had turned up and no one was sure exactly which direction to head in now. Our nurse encouraged us to go home for a few hours since we had been living up there and see my family on 4th of July. While I know she hoped the break would restore my own struggling spirit, I just worried the whole time and called her to check on Addie constantly. I was actually relieved to get back up there and determined I would just have to stay by her side and love her with all my strength until she got back hers.
Later Monday we got our first clue from a chest X ray. Although her lungs did not look overly ominous, it was clear there was some fluid in them and that could be causing the grunting and greyish coloring. More significantly though, the doctors noticed that her heart looked abnormally large on the X ray. They were able to pull up a previous recent X ray and confirm that in fact her heart looked significantly bigger at present. It was the weirdest feeling because initially I felt very relieved that they had some clue what was going on. I had found the confusion and complete lack of answers maddening but that relief was certainly short-lived as hearing these doctors talk about my baby's heart filled me with fear! Certainly I was no stranger to hearing bad news about my babies' health or organs, and yet there is something instinctively frightening when it is their heart you are talking about.
Tuesday morning brought a series of heart tests, an echocardiogram and some specialized blood work, and Addie was even more pitiful. The monitor showed that she was breathing 100 times a minute and that her heart was beating 200 times a minute- it was clear her body was working incredibly hard. The sad kitten whimpers continued and her coloring was greyish and watching her suffer like that was breaking my own heart into a million pieces. The test results were analyzed and the doctors came and talked to me and told me that Addison was in 'Congestive Heart Failure'. How my own heart did not stop at that moment I will never know but those sounded like the worst three words I had ever heard. While I was now an expert on kidney failure and had some fleeting experiences with respiratory failure, I knew absolutely nothing about heart failure. But I knew enough about biology and the body to know that if your heart fails, you fail. More than any other diagnosis we had ever been given, this one just terrified me.
I did really completely understand those words at that time. I understand it better now and realize that basically her heart had absorbed so much fluid (it was congested with fluid) that it was too swollen to pump effectively. I am sure someone did try and explain it to me then but all I could hear was HEART FAILURE. Those two words repeating in my head over and over.
I didn't break down and cry, though. I was too scared for that and too overwhelmed. I just sat there numb and nodded a lot. I tried to process everything they were telling me as intellectually as possible while trying to block out my feelings and emotions to the extent it was feasible so that I can keep my composure and be the strong mom I knew Addie needed at that moment. I remember at one point on that Tuesday one of our nurse practitioners came and sat down beside me and said 'I'm worried you don't understand how serious this is.' She had mistaken my facade of togetherness for confusion over the magnitude of what was occurring. Although I tried to assure her that I did understand, she continued to explain to me what we could lose Addie and that she may not make it through this. Of course I fully knew that but having to hear it spoken certainly did ache my broken heart further.
My mom and I talked about it and both agreed that we couldn't put those awful three words up on Facebook or out there. We knew they would inspire that same sense of sadness and panic in others that they did in us and we did not want our families and friends burdened to that extent. And on top of that, I just don't think we could acknowledge them in that way. Putting it in writing would authenticate the diagnosis in a way we just couldn't face. We could hardly bear to say the words to each other or out loud. Congestive Heart Failure. It was just too upsetting. So we told people that Addie was having some issues and complications and needed prayer but kept the true intensity of the situation to ourselves.
There was no easy solution because we did not truly understand why this had happened. It was definitely suspected that it was related to her dialysis and excess fluid in her body. It did not make medical sense though for mathematically we had pulled plenty of fluid off of her. Her twin brother had experienced the same initiation to dialysis and he was not having this issue. We had to question then if she had some underlying heart condition that had merely gone undetected until the initiation of dialysis. Her kidney doctor felt that all the changes between losing her last kidney and starting dialysis had led to dramatic changes in her heart's structure and function. There was a long explanation about the role that her thyroid may be playing. None of the hypotheses though came with a clear plan for a quick solution. For Tuesday night, our goal would be to aggressively pull fluid off her with dialysis and to see if we could dehydrate her heart back to functioning.
Over night we effectively dehydrated her such that her eyes sunk in and she looked like a skinnier version of her grey sad self but the monitor and her kitten whimpers revealed we had not made any great progress. She continued to breath 100 times a minute and her heart was beating excessively to compensate for how weak those beats were. Amazingly she did keep her oxygen levels up but we knew it was wearing her body out to manage that. I stood there Wednesday morning watching her struggle and feeling all the fears I had been trying not to acknowledge come at me at once. The tears finally came and our favorite nurse Lori came and wrapped her arm around me and I told her what was weighing most heavily on my heart:
"I cannot believe I sobbed over her hearing. I have spent the last week so upset over whether she would be able to hear and talk and how that would impact her as a teenager and that just feels so ridiculous right now. Now I might lose her before we even know all that and I don't care anymore if she can hear. I really don't. I just want her to be okay. That is all that matters to me anymore. I just need her to survive and be okay again and I won't ever cry over her hearing again. I don't need God to heal her hearing, I just need him to heal her heart."
It was a moment I will never forget and a moment I still think about when the sadness over developmental issues creeps back in. On that day, Addie's heart had yet to be healed but God was working then on healing mine.
Lori reassured me that it had been normal and okay that I cried over the hearing but understood and agreed with me that right now we just needed healing for her heart. She said all the right things and was a great source of comfort. I grabbed her hand and told her she had to stay by my side all day and couldn't leave me! She managed to make me laugh by expressing her concern over needing to pee at least every now and then! But she did stay by my side all morning. Al was on his way up and my parents were available but I also knew that seeing Addie like that would break their hearts too so I was actually okay right then with being there by myself with Lori there. It felt easier not to see how painful this also was for all of them.
The doctors all came in and it was clear something needed to be done. The best option we had to get her heart working more effectively would require a central line going into her heart to deliver constant IV medication that would stimulate it to work while we continued to adjust dialysis and try and understand what had happened to it. There was, however, a significant risk in this plan. It would mean taking her to the OR and putting her under anesthesia with a weak heart. Anesthesia and the placement of lines right near her heart has risks any time but doing that when she was so clearly compromised was far riskier. Her heart could give out with the added medication or manipulation. But then again, doing nothing hardly seemed a real option. She was certainly going to get worse and run out of time and we would all just be watching helpless. The doctors gave Al and I the choice which I always both appreciate and hate! On one hand, I know it is important for us to get to make those decisions and feel in total agreement with a plan. On the other hand, they are such incredibly difficult decisions and I worry myself sick about whether I am making the right one. Al was very supportive of whatever I felt was the right thing to do.
After praying about it, I felt pretty at peace that we should do the surgery. In most of these instances, I would favor taking a risk that I believed could save or greatly help my baby over doing nothing and watching them suffer. The doctors supported the decision and plans were made for her to go to surgery that afternoon. The NICU doctor who was on service at that time was known for anything but his bedside manner or compassionate approach. He was a great doctor, no doubt, but his manner was abrupt and he had never seemed particularly warm towards me or my kids. But that afternoon as we prepared for this surgery, he was particularly attentive and kind. In fact, as Addie was wheeled down to surgery, he walked with Al and I down there. And he stayed down there and talked himself to the surgeon who would be doing the procedure (it was actually an interventional radiologist) and he stood there with us waiting for them to take her in. I was so enormously thankful for him being there as I knew he was carefully explaining to the anesthesiologist and surgeon the seriousness of the situation and making sure that everyone knew what they needed to ensure a safe experience. And yet, at the same time, his unusual interest and support also reinforced to me just how serious this was. I knew if he was sure Addie would be okay and if this wasn't a huge deal, he would have been with the other babies who needed him instead of us. I wished very much we did not need him there at that moment and yet was so grateful that given we did, he was there for us.
Addie did fine in surgery and came out with a large line coming out of her femoral artery in her thigh. It was large and sad and Al cried when he saw it and just kept saying 'but she loves to kick her legs'. But, it sad as it may have been, it was delivering several important heart medications around the clock and hopefully helping her exhausted heart continue on as we continued to try and figure out what had happened.
The medication did provide some necessary short term relief for her heart and within a couple of days, her vitals had improved, her coloring had improved and although she was far from 'herself', the cat whimpers had disappeared and occasional smiles were spotted. We were all breathing huge sighs of relief, certain the worst was past and disaster had been averted.
Our celebrations were premature though. For while Addie's heart would be healed and mine along with it, it was not time yet. These couple of days would provide a necessary break before things would go terribly wrong again.