Saturday, July 5, 2014

Chapter 18: The Tale of Two Hearts- Part 2

This may surprise you but I believe that going through incredible stress and medical crises actually turns you into an eternal optimist.  You may assume the opposite- that by this time I was expecting the next bad thing but instead, I seemed to will myself to always assume that the most positive outcome possible would in fact happen for us.  This was in no way based on experience but rather an irrational but necessary survival mechanism.  When you hear from doctors all the bad things that can happen, you just cannot cope as a pessimist.  You will never sleep again.  The only way to get up each morning is to cling to that ever patient optimistic side of yourself and assume that today is the day that things will drastically and permanently improve.

Therefore while I arguably never should have assumed that Addie's heart had fully recovered two days after her emergency surgery, I needed to believe that the worst was over and I am grateful for my two days of smiles and relief.  The nurses were relaxed and rejoicing with us and we dressed the babies up and took pictures of them, Addie all pink from a recent blood transfusion and Max all smug from his week of being the better behaved child.  My aunts from Oregon had come to visit and I was so relieved that things were better and cheerfully took an evening off from the hospital for the first time in a week to have dinner with them.  And I am glad I had that day of happiness with them because everything was going to change when I went in the next day.

Sunday morning and I head in early excited for another day of recovery and Addie smiles.  Immediately, though when I get there, I know something is wrong.  Addie is not fussing at this point and her coloring is still pink but the grunting is back.  Earlier in the morning, she is grunting after some but not all breaths.  As the hours pass though, every breath has a grunt with exhale.  Her spirits are going back down and she is crying and unhappy.  My favorite nurse is not working that day and we have an animated and great nurse but one who is far less familiar with Addie.  So I am starting to sound like a paranoid mom saying over and over 'it's a bad sign she is grunting', 'I really just don't think she is okay', 'I feel like something is wrong with her heart', 'Please please can we just get a chest X ray or echo'.   The nurse was not being dismissive but she was also clearly not sharing my urgency.  So after getting tired of my pleas for a chest X ray, she put orders in for one but with it being a Sunday it took a bit of time.  The X ray finally happened but by then Addie has escalated to wailing so as soon as they get the images, I grab her from her bed and am holding her, bouncing her in my arms, trying to soothe her.

I would never claim to have any sort of photographic memory and I have a terrible spatial awareness and am not generally great with visual recollection... BUT the handful of truly memorable moments with the babies I can remember like a photograph.  I know exactly what they were wearing.  I know where I was standing and who was in the room.   So I know that when I was holding Addie, she was dressed like a perfect doll in this striped tunic style dress with coral leggings and a white sweater over it, and, of course, a bow.  It was one of her first times to wear that outfit and she was precious in it, even as she was crying and squirming in discomfort.  I'm standing at this point trying to find some comfortable position for her and holding her back against my chest and kind of bouncing or dancing.  I do not have a direct view of her face so it was actually the animated nurse who first noticed that Addie's mouth all around her lips had turned blue. Which thanks to Maximillan the Chameleon I knew instantly meant her oxygen levels were low and that she was in trouble. This shocked me though because, despite how I had been saying she wasn't well, I wasn't expecting her oxygen to drop like that.  The whole miserable week before when her heart was in so much trouble, she never turned blueish and she kept her oxygen up.  So it was terrifying to think that she was now somehow worse than that.

The nurse swept her out of my arms and checked her oxygen level and sure enough, it was in the 70s and dropping (it should be 95-100).  She pages a senior doctor with an emergency.  No doubt we were a matter of minutes from her calling a code but my favorite neonatalogist (preemie doctor) was just down the hall and came running in.   I'm standing there awkwardly not knowing what to do and feeling completely panicked and I have never been so happy to anyone as I was when Dr Jones walked in.  I thought he was the most calming and competent of all the senior doctors I had met so I knew she was in the best hands.  He rushed over and immediately began bagging her.  The oxygen mask was over her face and he was pushing oxygen in as fast as he could, pumping the bag over and over.

Thanks to our regular Max attacks, including many a day the past couple of weeks, I was completely familiar with seeing my child being bagged so it should not have been a particularly scary moment for me.  But I had never seen Addie bagged before and also, Max responded quickly, like within a couple of minutes, to being bagged.  Meanwhile 5 minutes has passed and Dr Jones cannot get Addie's oxygen to stay up.  He is keeping it from slipping further but he isn't stimulating her breaths to be strong enough to hold it.  He calls out to the room full of nurses and other doctors now that he is going to have to emergency intubate her and stick a breathing tube down to connect her to a ventilator.  I'm standing by myself off near Max's crib watching the whole thing and feeling more terrified.

Someone brings Dr Jones the supplies he needs and he stops bagging her to try and intubate her.  While he is doing this, her oxygen is dropping lower and lower.  I am staring at the monitor as they are dropping into the 40s.  I understand now that it is very normal for oxygen to drop like that when someone is being intubated and that it is not an ominous sign.  But this was my first time to watch someone be intubated and the room was so tense and stressful that no one could be explaining it to me.  So I stood there and I was genuinely afraid that she was dying.  All I could see was that her oxygen was getting worse, her heart rate had started to drop and although the doctor had now been there for about 15 minutes, things were not getting better. In hindsight, I probably should have run out of the room and waited in the hallway so I wouldn't be haunted with images of Addie in her doll outfit looking like that but I also was not going to leave her at a time like this so I just stood there not moving paralyzed with fear.  Thankfully those anguishing moments were short and within a couple of minutes, Dr Jones had her intubated, hooked up to the ventilator and her vital immediately improved.  I breathed a sigh of relief so loud that suddenly everyone in the room suddenly remembered that I had been standing there watching this whole scene and the doctors and nurses all emphasized to me that she was okay now.  Except for, of course, the fact that we had no idea what was happening to make her so sick again.

Dr Jones then pulls up the chest X ray that thankfully had been taken just before all this happened and saw that while her heart was not as big as it had been, her lungs were very hazy from having fluid in them.  Which was compromising her breathing ability.  He explained to me that this can happen with heart failure that the heart ends up pumping fluid into the lungs.  He also reassured me that although we obviously had to work out what was going on with her and how to help her, she was now stable as the ventilator would breathe for her and keep her safe until we did know better how to help her.  He was super comforting and the pedestal I already had him on was now even higher!

My mom and dad and aunts had been on their way up to have lunch with me at the hospital when all this began happening but I went and talked to my mom and said that while i was happy for her to stay for a while, I really couldn't handle a whole group.  My dad drove my aunts home and my mom stayed with me while Al was on his way up.  He had stayed home that morning and started driving down after Addie was stable and intubated.  Everything had happened so fast I had not even had a chance to let him know what was happening from the time her lips turned blue until the doctor had the breathing tube down.  By the time Al got there, there was really very little for us to do.  The ventilator had indeed stabilized her and actually understanding what had happened or what we should do would have to wait until round Monday morning when everyone was there... so until then, we held Max and we prayed for Addie and tried to keep our own emotions from spiraling down.

The next couple of days would bring more questions than answers.  No one was really sure what was going on with Addie.  The kidney doctors thought her heart was the biggest problem.  The heart doctors thought dialysis was the biggest problem.  The preemie doctor who had walked us down for Addie's surgery was back and he did a great job of getting together with both specialists and trying to bring them to an agreed upon plan.   We would continue to pull fluid off aggressively and leave her very 'dry' or dehydrated and we would continue to administer IV heart meds around the clock and wait and see.  The worst part was that the whole situation was casting this dark cloud over the future.  Conversations worked themselves into this terrible circle-  Addie's heart is not tolerating the fluid shifts of dialysis.  It would be better if she got a kidney.  You cannot do a kidney transplant on someone whose heart is not stable and able to handle stress.  So, we may not be able to get a kidney in her.  And without a kidney, her heart is going to have major issues.  Of all the predicaments we had ever been in, I found this one the most depressing.  I had come to see a kidney transplant as my goal for the babies and as our eventual freedom and happily ever after, so to listen to the doctors both reinforce how much she needed a kidney and also question whether it would ever be possible was just torture for me.

Addie ended up staying on the ventilator for four days.  It was a miserable time for her.  As she felt better, she was aware of the tube down her throat and most unhappy about it.  We swaddled her tightly in a blanket to keep her from pulling it out and she was so dehydrated she was constantly thirsty so we would put wet washcloths to her lips.   It was absolutely heartbreaking.   And it was one of many times when I saw what a gift it was that God had given us twins.  For while we felt helpless with Addie on the vent, we were blessed with a super cheerful little boy to hold and love on and find comfort in.  Max was actually doing really well on dialysis and he was feeling great.  It was such a needed joy to have him there to lighten our spirits as we dealt with watching Addie struggle.

I cannot tell you the exact moment when Addie's miracle happened.  I am not even sure if there was a single moment or if was a more gradual process.  But at some point in that week, God healed Addie's heart.  After four very long days of watching Addie restrained and on the ventilator, it was time to pull out the breathing tube and see how she did on her own.  She has thoroughly dehydrated and her vitals on the ventilator looked good so there was no way to know how she would do without it until we took the plunge and pulled it and gave her a chance.  Initial nerves were settled when that night she did really well and the haunting grunting was completely gone.  The eternal optimist in me was rejoicing as each hour passed and Addie still seemed well while the recently traumatized worrier in me kept wondering when it would all happen again.  At that point, I think everyone thought that this history was going to repeat itself at some point.  Since we had come to no real answer other than her heart is highly sensitive to the fluid shifts of dialysis, it seemed probable that dialysis was going to be very rough for her and that these scares are likely to occur again at some point.

But they did not.  Ever.  The days passed and we constantly did chest X rays and Echocardiograms to study her heart and everything looked good.  It was not what we had expected medically.  We expected her heart to improve, yes, but continue to show signs of sensitivity and stress.  It was beyond what anyone had hoped.  We would repeat in a couple of days and everything would look good. We would follow up in a month and everything would look good.  Six months and everything would look good.  Each time we got news that Addie's heart still looked good I would become overwhelmed with excitement and gratitude.  Before long, I had truly realized that she had been healed and that her heart was going to stay looking good.  Then, instead of being nervous for these heart checks, I would anticipate the joy of witnessing once more Addie's miracle.  And each time the tests confirmed that Addie's heart was still doing great, I would remember the moment when I stood by her bed crying and told God I would be okay with her hearing loss if he would just save her life and heal her heart.  And He did.  Completely.  And in doing so, He healed mine.

It was a terrible couple of weeks but it completely changed the way I saw so many things.  To this day, I marvel at what a miracle and blessing sweet Addie is.  She doesn't resemble that very sick 6 month old in hardly any ways but I remember how things were for her and savor her health and her perfect little heart so much more richly.   And while I cannot say I have never shed a tear over hearing or developmental issues, I have never grieved and mourned for it like I once did again.  Because I saw firsthand what mattered most and I know that as long as Addie is healthy, I do not need anything more.  I have never since thought of Addie as a child with hearing loss or a child with delays, I look at her and all I see is my miracle.  My healed little girl.  God gave her back to us in two parts- on that day when her heart was healed and then fully on the day of her transplant.  Two big miracles that have resulted in a perfect little girl.  Who cannot talk yet because she cannot hear well.  Whose mom thinks that is nothing.  Whose mom sees only the miracle.

Addie's healed heart was not the end of her troubles, but it was the start of her healing.  Dialysis would continue to be very difficult for her but with a strong heart now she was able to endure it.  And able to receive the important gift of life I was holding onto for her.  My healed heart was not the end of my struggles, but it was the start of my healing.  Difficult news and crushing predictions would follow but God had strengthened my heart to endure it.  Two weeks of tragedy gave way to a miracle that would teach me who was in control, what mattered most and that I could endure more than I knew possible.  For that reason, I will never see Addie's heart failure trial as a sad story.   I will always see it as a life changing story of healing.

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