Chapter 20: Leaving my Village

At the end of August, once Addie's heart was behaving and I had waved my white flag of surrender to the feeding tubes, I looked up and suddenly, finally could see it.  The light.  At the end of the winding, twisting, very long metaphorical tunnel we had been wading our way through.  For so long, we could not even see a glimmer through the turns ahead.  But, finally, the end of the pathway was illuminated and while we could see a few hurdles ahead, it was an amazing relief to realize an end, to this stage at least, was finally visible.

Our eagerness to bid farewell to the NICU had nothing to do with not enjoying our time there.  In fact, by the point where the light was perceivable, our NICU days were in fact downright enjoyable.  The babies were comparatively healthy, they were smiling and social and enjoying the crowds of doctors and nurses who came by frequently to visit with the famous giant NICU babies.  Each baby had their own nurse because of the dialysis and we knew all the nurses and had selected a handful of 'primary nurses' for both days and nights.  These girls were more than amazing nurses, they were my friends now.  I was on summer break so I had no need to leave the hospital so I spent every night in a Ronald McDonald room in the hospital that they had given up making me move in and out of.  I had my own space and my own friends and constant support and help.  I thought about regions around the world where whole villages raised their babies together, the children surrounded by adults who knew and loved them.  I had embraced our NICU as my own village, Max and Addie were surrounded by care takers who loved them and the days of caring for them were passed with laughter and a feeling of community.  In many ways, the idea of leaving my village to then care for all their needs on our own at home was frightening.  However, I also knew it was time.  By late July, I had only a couple of weeks left to enjoy my days of cheerful village time before I would have to go back to work and I had decided early on I could not face another year of working with them over an hour away in the hospital and the long afternoon and evening commutes to see them.  I needed by babies home when I went back to work.  I had decided months ago that I would make that my mission.  Plus, for all the companionship of my village, it was also a village where other babies became very sick and even died, a village where my sweet babies had to get daily lab draws and where they were not free to go outside and experience all the normal simple things like parks and car rides and the feel of raindrops that 6 month olds are meant to be experiencing.  I loved my village in many ways and yet I also knew it was time to leave and explore the big world out there.  So despite how comfortable and even enjoyable my days were, I did truly rejoice and feel palpable excitement at seeing the light get stronger by the day in late July.

It is sometimes baffling to me when I hear about a 'normal' or typical baby being born and then going home like 48 hours later.  Who trained those parents?  When are they going to get weeks of detailed instruction? Did they pass their 'care by parent' trial parenting test? One could even argue there might be an overall benefit if every parent did have to go through the training and proving that we did.  But for healthy kids, they send them home and trust the parents will figure it out between instinct and trial and error.  When instead you have two kids who are going home requiring 18 hours of dialysis therapy, more than a dozen medications each and one of whom has an unfortunate tendency to hold his breath and require help to stay alive... well, it makes sense that they were not about to just send us home to figure it out on our own!

While they were in the hospital they had nurses who would initially manually fill them with dialysis water and manually turn the clamps at set intervals.  But, in order to come home, they needed to be successfully using an autocycler machine that would perform this role.  We had been hearing about this magical autocycler for so long that in my mind it was going to be gold plated and covered in rhinestones and take our breath away with its glorious powers and presence!  Instead it looked like a large 1980s printer- completely mundane in appearance but very important in function.  Al and I would have to set up the cycler each day, choosing the correct type of dialysis fluid and programming the correct settings and entering their weights and blood pressures.  We would need to wear masks and gloves and connect the babies to their machine.  We would literally 'plug' them in.  They had a 6 foot leash and could move around within those 6 feet but no more.Then, in theory, the machine would fill and drain water every hour for the next 18 hours without us doing anything. If everything went smoothly, the machine would proudly announce its completion the next day and we would disconnect and woohoo, blood is clean, excess water is gone and the babies can live life to the fullest for 6 hours until it all started once again.  If things did not go as smoothly, the machine would instead angrily alarm and yell at us and we would have to figure out what was wrong and try and fix it.  It was clear early on that when it worked well, this machine was truly wonderful and that when it did not work well, this same machine could be maddening.

Before they would send us home with the temperamental machine, they wanted it to be successfully working in the hospital and have us go through a week long training.  As all that was coming together, our nurses were busy training us on their medications, we were taking CPR courses and being encouraged to take over bagging Max during one of his now less frequent breath holding spells.   Max started on his autocycler a couple of weeks before Addie because her heart failure drama had slowed her down.  So by late July Max had completed two successful weeks on his machine and Addie was starting on hers.  We were giving most of their meds and feeling confident with the details of their care.  We were ready for our training and to start packing!  Interestingly, we had to actually be out of the NICU and have the babies in a standard pediatric room where we would sleep in the room with them during the training week.  Already having established himself as a dialysis super star, Max got the honor of leaving the NICU and moving up into big kid world! We actually requested Addie get to stay in the NICU until she went home since we knew and loved all her nurses and they would be there at her bedside.  If we moved them both, they would be in separate rooms and we would need to both stay every night and constantly be leaving one of them alone during training.  So Addie got to stay and soak up another couple of weeks in her village while we focused on getting trained with Max.

We were blessed with a great dialysis nurse.  Julie would spend the week training us and did so with a patience and a sense of humor that ensured that we both learned a lot and managed to have some fun during that week.  Me, Al and my mom were crammed into a small room with Julie discussing all aspects of running dialysis while my mom's best friend Becky spent the week with Max in his new room entertaining him and keeping him company.  When training ended in the afternoon, Al or I would take over in Max's room providing all of his care and practicising all our new skills.  We would all take turns to go back down to the NICU and spend time with little miss who was happy and seemingly oblivious to her brother's departure.  It was a busy crazy week with all hands on board, all of us very busy, but very excited.

Which is not to say there were not moments where all this change was not stressful.  Having long been in a NICU surrounded by nurses who knew and understood him, Max's color changing spells had lost most of their scare factor.  In this new environment though, he made it only a day before a nurse called a code during his spell and the entire room was flooded with doctors and panic.  We were in charge of learning how to drop feeding tubes down Max's nose ourselves and I cried having to stick the tube down his nose, and failed to do so many times, escalating my own anxiety and his discontentment, before I succeeded.  Additionally an interesting conversation came up during this week of otherwise exciting advancements... for the first time ever, someone mentioned the words Cerebral Palsy in relation to Max.

When you live in a room with 2 pound babies, it's easy to lose focus on developmental milestones.  When you are worrying day in and day out about your babies survival, it's easy to lose focus on developmental milestones.  When you are watching labs and fluid levels and making important daily decisions and changes, it's easy to lose focus on developmental milestones.  And when your child has been so sick and living in such an atypical environment for months, it is hard to even know what developmental milestones you should be focusing on should you remember to think about it.  So, while it may seem strange that we were relatively unconcerned that Max was not holding his head up or rolling at nearly 8 months old, it did not seem that anyone around us was overly concerned either.  So we just never really worried about it.  There had been some warning signs.  His respiratory issues and tight muscle tone had initially alerted our attention and even earned him a visit from the neurology team.  They had an MRI completed when he was about 6 weeks old and ruled the results to be unimpressive- no obvious issues and so neurology 'released' him and we never heard anything about a neurological problem again.  Then around 3 months Addie was confidently holding her head up and working on rolling and Max was not.  By 6 months, Addie was rolling around her bed and sitting in a 'tripod' position and Max was still not holding his head up.  His delay was noticeable when he was constantly next to his sister but given how many issues he had in those first few months, we were aware but unconcerned. I think we all just kept hoping and believing he would catch up and no one wanted to even entertain the idea that something else could be wrong for these sweet babies that had already been through so much.

One day training week Max's physical therapist came to visit him.  She had been seeing him for months now and he enjoyed working with her and she was always great about being accommodating and working around when he was awake and feeling well.  This day she was working with him as always and I was watching and for some reason I casually asked if she thought he would catch up once he was home.  I was really asking the question in hopes of getting reassurance, rather than actually seeking a fleshed out answer.  Nicole paused and made a non-committal response.  She continued on and said someone like Max is harder to predict because of his neurological issues.  I stopped her and pointed out that Max did not have any known neurological issues.  She was really surprised by this.  Somehow in her months working with him, she had inferred he must have some neurological issues, even though in reality neurology was not following him. She suggested we may want to actually get neurology to see him and look into his atypical muscle tone.  He had low muscle tone in his core but tight muscle tone in his limbs.  She threw the term 'cerebral palsy' out as one possible diagnosis that would present with this tone pattern.  She emphasized that she was not making a diagnosis and also reassured me that some children who have cerebral palsy have no lasting effects aside from maybe messy handwriting.  I appreciated her input and agreed it probably needed to be looked into but that I was sure everything would be fine.

And then that night I googled Cerebral Palsy.  And I read blogs.  Some hopeful blogs, one devastating blog about a family who lost their child.  I read wikipedia descriptions.  I read for hours.  I saw symptoms that reminded me of Max.  I looked for symptoms that would disprove that Max could fall into this category.  I searched for the happiest stories I could find.  And then I made a decision to stop reading and stop thinking about it and go back to our happy week of homecoming excitement.  Al and I talked and agreed we did not want to involve neurology at this point and delay Max coming home.  That would have to come later if he still was delayed.  But surely he would not be.  Surely he would catch up at home and we this issue would all just go away.  We chose consciously to ignore the signs.  I think at that point it was all we knew how to do.  Everything we had been through was so overwhelming and we were trying to learn how to administer dialysis at home and we were so close to this new hope.  The only thing that seemed feasible then was to run as fast as we could towards the light in front of us and pray and believe the rest would fall into place.  And so we did.  We did not talk again that week about Max's development.  It would be months before we would say the words cerebral palsy again. The seed stayed planted in my mind, slowly preparing me for what was to come.  Slowly making room in my heart and mind and slowly waiting for the day when that would be our focus.  I am grateful the seed was growing and preparing me but I am also grateful that we did choose to embrace the joy that week and that we gave all our energy and enthusiasm to getting our family home.

We finished dialysis training Friday afternoon and we brought Max home the following Wednesday.  By that week, I was up at school getting ready for the next year and in staff development as the school year was about to start.  Four days after Max came home, we brought Addie home on a Sunday afternoon.  And Monday morning I woke up and taught my first day of the school year.  We just barely made it but my babies were in my house by the start of the new school year, just as I had planned and hoped and dreamed they would be.  There would be days I would miss our village terribly and we figured out very early on what a huge responsibility keeping these babies safe would be but it was an important step for next phase for our family and we were thrilled that we were finally reaching that stage.

Of course, no milestone would come without its own drama so the day of Max's homecoming is its own tale, it's own scare and it's own miracle... and therefore it's own story.

Chapter 19: Losing their Appetites

Sometimes I meet people for whom food is just not a big deal.  They eat to feel full, they give little thought to planning meals and they approach shopping lists with a pragmatism and frugality that is admirable, if not completely confusing to me.  We are not those people.  We are food people.  Not fat people as we force restraint and refuse to completely indulge our food fantasies.  But we love food.  We are the family that starts talking about the next meal soon after finishing the last one.  A good vacation is one with delicious novelty food.  Holiday traditions all include beloved recipes.  And so when we imagined having a family, we imagined all the food traditions we would establish with our kids.  They would bake cookies with Nana, go for Saturday morning doughnut trips with Dad, and develop a taste for Australian vegemite and American peanut butter.  It has therefore been a big adjustment instead having children that do not eat.  When we tell people that the kids do not eat they look at me confused.  Like surely you don't mean they never eat.  You must been they are picky and only eat chicken nuggets and Mac and Cheese.  Oh if only! Nope, they don't eat anything.  But once upon a time they did.  Dialysis, though, would change that.

As small nearly four pound preemies, Max and Addie could not yet eat, as was to be expected, so they had small NG tubes that went through their nose and into their stomachs to deliver food.  The feeding tubes were so expected that they did not really bother me but I was very determined to get rid of them.  Addie was healthiest so my energy was quickly poured into trying to get her to eat.  I breastfed her for a couple of weeks until the number of supplements we needed to add to their feeds and their other medical issues made bottle feeding more sensible.  So I continued to pump milk for them for months, pour tons of medications into it and devote time to trying to get them to drink the milk.  And it was never easy.  They were always reluctant feeders, but with perseverance Addie was drinking all her bottles, which included all of her medications, by early February, well before her due date, and we able to pull out her feeding tube for good.  I rejoiced in being able to take pictures of her face, without the tape and tubes that seemed to take up her whole face previously.   

Max was an even greater challenge because he seemed to have a weak swallow.  We started working on feeding with him later due to his lung bleed slowing everything down initially.  Then when we started, it seemed to go badly with him acting distressed and disgusted by the milk.  More concerning, the doctors were afraid he was choking on the milk and it could be getting into his lungs.  After a swallow study, it was decided he could only drink milk if we had thickened it.  So in addition to adding all of his meds to his milk, we now poured powder into it.  It looked like thick sludge and smelled like iron and antibiotic.  I was, and remain, completely shocked he actually drank it.  But slowly but surely he mastered drinking his sludge and his tube too was pulled.  Two babies with tube less faces!!! So many pictures!!! They looked healthy to me without the tubes and at that point, it seemed so important to me that my sick kids still appeared healthy.  This was not to say they had become amazing eaters.  On the contrary, each meal seemed to be a challenge and the nurses, therapists and all of us worked very hard to get those bottles emptied.  I spent hours thinking about how they were eating, worrying about if they were gaining weight and buying different bottles with varied nipples.  And because it was a challenge, I found myself filled with pride that they did eat and counted each ounce they gained as a personal accomplishment. 

As soon as we started talking about dialysis though, the warnings started.  Kids on dialysis do not tend to eat well.  They usually need feeding tubes.  Their bellies are so full of the sugar water that they feel full all the time.  The electrolyte swings remove their appetite and taste for food.  They tend to lose any desire to eat.  There was even a discussion about whether we wanted to go ahead and put a g tube, a permanent feeding tube surgically placed into the stomach, in before they started dialysis. Although these discussions were perfectly reasonable and I recognized that they were trying to prepare me, I was nonetheless convinced that this would not happen to Max and Addie.  They were going to eat even on dialysis.  They had been eating on their own for months now and I knew how to get them to eat even when it was hard.  So I told the doctors I wasn't worried because MY kids would eat.  The whole dialysis causing them to lose their appetite and not eat was never going to happen to them because I was the master baby feeder.  It was a combination of pride (which does, of course, always come before the fall) and stubbornness and innocent optimism.   

Once I had declared that my babies would continue to eat and that we would not be returning to feeding tubes, I then had made it my personal mission to ensure that ended up being the case.  Those initial days on dialysis, I was there every feed, using all my best tricks to get the bottles down.  The bottles had unfortunately become even more disgusting as we now had to add a lot of sodium into their food due to the dialysis.  The milk now stank of salty iron and medicine and I actually felt guilty feeding it to them.  But I continued to because we would not need feeding tubes.  Other than when Addie was so sick, we did manage to get them to drink their bottles initially and I was so excited, I pretty much wore a permanent smug supermom smile.  However, with each day the challenge became harder.  By three weeks after their surgery it was taking so long to get their bottles done that it would nearly be time for the next one by the time they finished.  I was essentially feeding one of them around the clock.  It was emotionally exhausting because I felt so anxious about each bottle being finished and I was trying to still seem calm and relaxed to them.  Feeding had become a huge ordeal but they were still eating so while my smug smile had vanished, I was still convinced it was doable and that I could avoid the feeding tubes.

Another week later and they were not drinking their milk well at all.  The occupational therapist was doing everything she could to help them, even facing them in the corner so they could not be distracted while rocking them and using every fancy trick they could think of.  It was not working.  Bottles were going unfinished.  An hour would be spent for them to get a couple of sips down.  Everyone was frustrated and the daily weight checks were getting more concerning as they failed to gain weight.  I knew I was losing this battle so eventually a full month after they started dialysis, I had no choice but to let the feeding tubes come back.  Tiny cheeks covered in tape to hold a tube down.  Little button noses with a tube wedged into it.  Sick babies actually looking sick.  It made me very sad.  I hated the feeding tubes.  But I also knew they had to get enough food and get all their medicines in order to get well enough to come home.  So I accepted my defeat but not happily.  It had been a mistake to insist that I could make them eat because it set me up to see their not eating as a personal failure.  It made something that should not have been particularly emotional in comparison to all we had been through, seem like a defeating blow. 

I did not give up even after the feeding tubes came back.  We continued for months to offer bottles, try baby foods and experiment with new ideas.  None of which proved successful.  But we continued to try.  And I continued to hate the nose feeding tubes with a passion.  In fact, I would not really feel acceptance of their tube feeding until we finally did get g tubes in their stomachs and the reminder on their face went away.  By that point, I had accepted it, even if I still could not totally understand it.

At three and a half, Max and Addie both still rely on their feeding tubes for their nutrition.  And I am still coming up with new experimental ideas and they are still not very successful.  I will offer Addie her own bag of donut holes and she will take it like a treasure and excitedly take out each little hole.  She will play with them, squish them, maybe feed one to Elmo, and then return them to their small white bag uneaten.  And I always look at her completely stumped and intrigued.  We are a family of food lovers.  How do my kids not love food?  How can they make a disgusted face at ice cream?  It is hard to truly understand.  But, I do accept that it is neither my fault nor theirs.  It is just a side effect of dialysis and everything they have had to go through.  It isn't a defeat, it's just a cost of a victory.  Dialysis saved their lives, it just killed their appetites in the meantime.  And when I look at it that way, the fact that they get their food through a tube rather than in their mouth really does not seem like a big deal at all.   Plus, it just means there is more food left for the rest of us food lovers...

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.