Chapter 9: Baby's First Surgery

A baby's first few months of life should be filled with many exciting firsts that proud new mothers eagerly document in their baby books.  First bath! First solid food! First trip to church! My babies memorable firsts looked a bit different... First ambulance trip! First IV placed! And... First Surgery! Not nearly as fun to record for the baby books but no less significant of milestones in their lives. 

My C section was my first ever time to have surgery.  My mom had her first surgery at 56 years old.  My dad had a knee surgery long before I was born.  My brother had tubes put in his ears but I would not remember that.  Surgery was anything but a commonplace occurrence in our lives.   Other than the hours I devoted to watching Grey’s Anatomy, surgery was about as far removed from my life as possible.  I still find it hard to believe that in just 2 short years, there have now been 27 times that one of my children have gone under general for a surgery or procedure.   It is no longer a rarity but unfortunately a pretty frequent part of my life. I’d love to say therefore that it has gotten so much easier and that it’s no longer stressful or emotional.  But, there is still something terrifying about leaving your child in the OR and I still hate surgery days more than any other days. 

She was 5 weeks old when Addie had her first surgery.  It was a small surgery, just having a Broviac or central line placed.  Which of course did not sound small to me when I understood that someone was going into my tiny perfect little girl’s chest and threading a piece of plastic into the main artery near her heart.  It sounded downright horrific and I was petrified and saddened by the whole process.  I suppose though that living in a NICU surrounded by sick babies does if nothing else, provide helpful perspective when needed.  So while I grieved that my sweet girl was going to have this surgery done, I also knew there were babies in her room who had endured open heart surgery within a week of being alive. And they were okay and their parents were okay.  So I knew God could protect Addie and that she could be just fine.  I knew there were worst things to have to endure and I took whatever solace I could in this as they wheeled her away in the tiny portable incubator to receive her first of many scars of honor. I waited and I worried and I prayed and I preoccupied myself with her adorable brother anxiously awaiting her return.

And I remember her return like a photograph, I remember her wearing a purple onesie and my marveling that the IV that had been so prominent on her tiny body was now gone.  She was now receiving medication through a small line hidden under the onesie.  It almost seemed better.  And while I had prepared myself for her to be asleep or in some sort of pain, it was to my tremendous joy that within an hour of her return, she was happily snuggled in my lap, drinking her bottle with a ferocious appetite and oblivious that anything significant had occurred in her life that day.  And relief washed over me.  We had just survived our first surgery day!  And it had not been horrible.  And my little girl came back as precious as I sent her.  And suddenly when I thought of the picture Dr Doom and Gloom had painted, of many surgeries to come, suddenly it actually seemed like maybe it wouldn’t be as bad as I had feared.  In that moment holding her in her purple onesie feeding her, I stopped feeling quite as scared.

Conquering my fear of surgeries was, however, short lived.  If I could give some advice to me two years ago, among the morsels of advice I’d hand to her would be to understand that every surgery is its own risk, its own experience and its own fear.  Do not fear some because they seem bigger and do not become complacent and stop praying and preparing through some because they seem small.  Just stay calm, stay busy, and stay prayerful and meet each surgery experience square on as if it was the first and only one.   But this was 26 surgeries ago and such wisdom perhaps only comes from experience.  Because after facing Addie’s surgery with sheer dread and trepidation only to find it far less traumatic than I had feared, I now developed a very relaxed approach to Max’s upcoming turn.  I was now a central line placement expert and it was going to be just fine.  No biggie.

Except well it did not exactly turn out that way.  Max’s surgery was delayed by a couple of weeks because he had been having some difficulties breathing and was still requiring CPAP a machine that went over his nose to give his breaths some extra force.  But replacing peripheral IVs in his hands and feet almost daily was becoming problematic so it was time for him to get his central line.  A swallowed a lump as he sped past me in his mobile isolette and then waited patiently for him to return and come sit on my lap and stare up at me and be as happy as Addie had been.  As the hours passed and he had not returned, I became increasingly less confident and more anxious.  We got word that his blood pressure had dropped and he had required fluid and things had not gone as smoothly.  As a result they were going to leave the breathing tube down his throat and bring him back sedated and intubated.  No sitting in my lap drinking a bottle.  No cute onesie covering up the new plastic in his chest.  He came back looking very out of it and sad and suddenly the things I had feared two weeks ago sending Addie off were there right before my eyes.  And surgery seemed like a really big deal again.  And years of many surgeries seemed heartbreaking and insurmountable.

It would be six long days before Max would come off the ventilator and start to seem like himself again.  And he would get worse before he got better.  Within 48 hours of his surgery, he started running a high fever and seeming quite sick.  His blood work indicated his blood pH had dropped and his urine output dropped and his blood pressure was unstable.  The nurse had to call and tell us that Max had developed a urinary tract infection that had spread to his bloodstream and he was now septic and in danger.  It was definitely the sickest we had seen either of them.  We spent days sitting by his bedside unable to touch him or hold him, reading him stories, holding back tears and praying he would get better soon.  He finally seemed to turn the corner.  One doctor told us that if he had not received a dose of immunoglobins IVIG the day after his surgery, we would have lost him.  Statements like that would just take our breath away.  We were literally living in a life or death world, daily.  And we had no choice but to just be grateful every single time life prevailed and a crisis passed.

These two experiences were our introduction to the world of surgeries.  Sometimes it goes so smoothly you wonder what on earth you ever worried about.  Other times you spend days wondering if you will even survive it.  Looking at it now, their first surgeries, their line placements, were actually perfect foreshadowing of their transplants down the road.  Addie would have to go first and we would worry ourselves sick.  And she’d bounce right back and completely shock us and make us laugh that we were ever so concerned.  And then Max would follow, and we would cling to Addie’s miracle for hope, and once again, he would have to fight for his life afterwards and leave us wondering how we would ever make it through.  

Chapter 8: Dr Doom and Gloom

There seems to be at times this irrational fear of denial among some doctors.  We have dealt with enough doctors now to know they are as different and unique in their personalities and approaches as any other group of people.  There are the cheerleader 'Be positive!' doctors, the funny 'humor is the best medicine!' doctors, the soft spoken 'we'll let you know only what you really need to know' doctors, the arrogant talk over your head using big words doctors, the compassionate put themselves in your shoes doctors and then there are the serious, 'I really need you to understand how serious this is' doctors.   It is the last group that I have always struggled with the most.   They seem very concerned that we have a full depressing understanding of all the daunting things our future has in store.  Any false optimism or perceived cheerfulness in light of our circumstances seems to send off a red flag that it is time to sit us down and force that worrisome denial right out of us.  I would come to feel that almost all neurologists belong to this last group and dread any meetings with them as a result.

At times I just want to explain to them that denial is in fact a coping mechanism.  Freud identified it as one of the ways we protect ourselves when we cannot deal with present realities.  Some degree of denial may be a necessity, and when they drive it out with their facts and figures and truths, we can walk away perhaps more realistic but inevitably stripped of a much needed way of coping with the unimaginable.

Our first of what would come to be many denial bursters occurred the afternoon following the ambulance ride.  By this point, we had been awake some 36 hours and had experienced seeing our daughter become sick instantly before our eyes, we had followed an ambulance at 4 in the morning and then we had been overwhelmed with this big new hospital and new procedures, new doctors and so many questions.  I remember clearly that I had on maternity leggings and an oversized purple shirt with no make up and crazy frizzy hair and in my sleep deprived emotionally wrecked state, I know I looked like a pitiful mess of a character.  This was the demeanor I had to take on for my first ‘family meeting’ that afternoon.

Sitting in the conference room was Al and I, the nephrologist (kidney doctor) at the time and a whole slew of doctors, nurses and social workers.  We had no idea who was a senior doctor and who was a medical student, there just seemed to be so many of them.  Somewhere in that room was a wonderful nurse practitioner who we would come to know and love, who would be there at the kid’s first birthday, who would come up and see them every time they were admitted long after they left the NICU and who closely follows their lives through Facebook.  We would come to see her familiar face as a source of comfort.  But that day she was just another stranger's face that looked sorry for us.  Somewhere in that room was a funny young doctor who wore chucks with his Scrubs and that we would affectionately call JD after the main character on Scrubs.  We would come to be glad for his rotations on for his friendly, relaxing and personable approach.  But that day he was just another face, no different from the many others who I have never seen again.

The meeting was conducted by the nephrologist who was on service at the time.  We would come to know 4 main nephrologists and value each of them for their unique strengths.   This particular man was on service at the time so had the misfortune of being the doctor who would have to diagnose the kids and explain to us what all that meant.  For playing this role, I would come to call him ‘Dr Doom and Gloom’ for a very long time.  Quite irrationally it always felt like because he told us what they had, he had somehow brought this tragedy upon us.  So through no fault of his own, following that meeting I would always feel quite anxious when he was on service.  It took me a long time to reach the point where I truly respected him, not just because he was very much an excellent doctor, but because he wanted us to know what we were up against and own it and face it.  His goal of banishing our denial was painful at the time, but arguably necessary in the long run.

As I sat there in my leggings with my wild hair and tired eyes, he drove home the point that we were talking about a very serious medical condition that would change the course of their entire lives.  Although we had worked out from our move to the big hospital that going home was right around the corner, truly nothing had prepared us for him telling us he expected us to be there for another 6 months to a year.  While we had seen firsthand how dangerous their condition was, the long list of possible complications from strokes to line infections to countless surgeries felt like a punch in the stomach. Suddenly dialysis became not just a scary possibility that we did not understand but an inevitable heartbreaking part of their future.  His most positive statement of the whole hour was when he said they knew of one patient who had survived to 21 with the condition.  He looked like this was supposed to bring me some sort of solace but somehow all I could do was think about what had happened to all of the others. 

I suppose the meeting can best be summed up by the following exchange:  Dr Doom and Gloom tells us that this condition will alter the rest of their lives and be something they will always deal with.  In a small shaky voice I challenge that surely once we transplant them in a couple of years, everything will be okay.  Like wearing your heart on your sleeve, I threw out there my remaining morsel of hope I was clinging to for dear life.  We’ll transplant them and everything will be okay, it was my attempt to make peace with this awful diagnosis.  And as soon as I offered up my heart’s hope to them, he replied with ‘Transplant is just trading one set of problems for another.’

And my little small fire of burning optimism against the odds burned out right then.  The goal to make me face my reality was a success and I felt drained dry of all positivity, hope and comfort.  Maybe it needed to happen in order for me to begin rebuilding a new vision and optimism rooted more firmly in reality.  Maybe I needed to truly demolish my ordinary dreams I had so clutched to.  Maybe being stripped bare is the only way you can really start over like you need to.  It was probably a necessary pain. But when I think about that day, I don’t think I will ever remember anything but the empty hurt we left with.  Robbed of our denial with nothing to put in its place.  Forever changed.

Of all the things we have been told by doctors, there are few we quote as often as the fact that transplant is trading one set of problems for another.   Having been through two transplants, I have at times scoffed at this quote and at other times, reflected on the intense wisdom contained in it.  Inherently it is true because transplant is not a magic cure all.  At the same time, I believe one of the best decisions I ever made was to ultimately reject this prophesy he laid out.

Over the coming weeks and months, as I began to accept our journey and our battle, I chose not to accept that transplant was merely an exchange of problems.  I built up a new dream whereby transplant would be my finish line.  We would keep them alive and we would give them our kidneys and we would achieve our happily ever after.  

No doubt it was the most important decision I made, to have something to hold onto.  To refuse to abandon all hope.  To choose to fight for some light at the end of the tunnel.  To insist on dreaming of a healthier future.   So while I now appreciate that he made me come to terms with dialysis and that he helped prepare me for their incredibly long hospitalization, I am also glad I chose not to be defeated by that first talk and that God helped to rebuild hope in me, a hope that was as necessary as air itself to sustain me for the years ahead.  

Chapter 7: Not in Kansas Anymore

After being blindsided that Saturday morning, I decided I needed to be more prepared for doctors coming to have talks with me.  So the next day when a nurse practitioner came to talk to me, I was very well prepared with proper clothing, a fed and snuggly baby in my arms and a serious and calm look on my face.  It was a demeanor I came to perfect and with very few exceptions, I was able to maintain through a lot of crises.   But on day two of my new reality, my cool calm and collected act was still a work in progress and I know I was shaking as I tried to sound intelligent and unafraid asking her questions about what exactly this kidney condition actually meant.

It was in that conversation that I started to really understand that dialysis might be a reality for my children, even though I still had absolutely no clue what that actually meant.  It was the first time someone mentioned a kidney transplant to me and mentioned that the babies would have to be a lot bigger for that to happen.  But most significantly it was the first time I understood that we were talking about a life threatening situation.  Because really hearing that there is a lot of protein in their urine does not really sound that terrible.  But as I sat there and listened to her, it started to sink in that this was no small foe we were up against.

The main thing I will always remember from that conversation on the day after was her telling me that the babies having been early might have saved their lives.  Her logic was that by being in the NICU, we discovered this kidney condition from bloodwork and not from symptoms or a serious infection.  She explained that some babies have their condition but it is only discovered once the baby is very sick and it is too late.  It was a very sobering thing to understand that we were talking about something that serious.  Something children died of.  I sat calmly and nodded.  And then sobbed the whole way home.  As I would do many more days in the weeks that followed.   There were days I just could not wait to get to my car so I could let down my facade of the emotionally composed mom I was using all my energy to keep up.  My car would be my little sanctuary where I allowed myself to feel and cry.  

I suppose the life threatening nature of what we were dealing with would have been more clear to me if I had gone home either of those two days and googled it.  I am no stranger to consulting Dr Google so I cannot totally explain why it was literally weeks before I would type Congenital Nephrotic Syndrome into Google.  I think I just knew it would be bad and I wasn’t ready to see it in black and white like that.  I didn’t want to believe it was something so concrete that it could be looked up.  I did not want to see words like dialysis and transplant and accept that reality.  So not only did I not google it but I forbid my parents from telling anyone the actual name of the condition so they couldn’t google it. As long as we just called it ‘a kidney condition’ and focused on the positive, all that life threatening part would just never happen.

That worked really well for 48 hours.  It was two days after the red robe day and I was very busy not thinking about kidneys and dialysis and pretending that life had not changed.  We were up at the hospital holding babies and Addie was uncharacteristically fussy.  She kept crying and the nurse was trying everything to console her and kept telling us that it was probably just gas.  I felt really unsettled about the whole thing and was worrying about her when we decided to leave for an hour to grab some dinner and then come back up for night feeds and bedtime rituals.  We were in the car coming back to the hospital when we got a terrible phone call that made no sense to me.

She started running a fever.  Quickly she got sicker.  She kept forgetting to breathe.  We had to put her on a ventilator.  She is very sick.  Her bad kidneys are removing her antibodies she needs to get better.  This is Very Serious.  She is not stable.  You may need to be at a bigger hospital with more pediatric doctors.  Get here as soon as you can.  This is a Very Big Deal.

There are a handful of images that to this day still haunt me.  One of those is walking back into that NICU where I had left Addie in a sweet pink onesie crying and moving and feisty and finding her now stripped only to a diaper, still and pale, with a tube down her throat.  It was the most horrible thing I had ever seen and I could not stop crying.  I did not understand what was going on.  I couldn’t even think clearly enough to realize I was worried she was dying.  I just felt hysterical fear.  I sat on Al’s lap and cried in his arms while we waited for what seemed like forever for the doctors to come talk to us. Those moments of raw emotion and grief became more rare as I got used to horrible images and scary twists and turns.  But that night is in my memory like a photograph, I can close my eyes and still see every detail.  And even now, knowing that everything will turn out okay, I still feel my heart rate accelerate and I still feel a lump form in my throat when I think back to that night.  Intellectually my life changed on the Red Robe Day.  From that fateful morning onward, I knew my life was different.  But emotionally the change happened two days later crying on my husband’s lap.  It became real seeing her like that. Nothing was the same as it used to be anymore and it never would be. That was the moment when I became the mom of sick babies.  I changed that night.

I also understand what the nurse practitioner was telling me when she told me that being early had saved their lives.  Because as much as I had wished Addie had been home with me in her perfect crib, I now realized that if she had gone from fussy to so sick she couldn’t breathe in a matter of hours at home, we probably would have lost her.  My empty arms those nights meant she was surrounded by nurses and doctors who were equipped with the machines needed to save her.  Everything that had seemed so sad now seemed like part of the plan to keep her alive and I had a whole new perspective on everything.

It was a crazy night.  Addie got better almost as quickly as she got sick.  The ventilator took away the concern about breathing and the IV antibiotics started to attack the Strep B infection she was battling. By the middle of the night, she seemed to have achieved at least a tenuous stability.  Once we were all breathing a faint sigh of relief, the doctors talked to us about moving to the big hospital in the city.  Up to this point, we were at the local Woodlands hospital where they were born.  It was 15 minutes from our house and while it had a good NICU, there were many things the big downtown hospital had that our smaller one just did not. There were kidney doctors there.  There were surgeons there.  There were infectious disease doctors there.  There were neurologists there.  There were 100 sick babies there.  Our small close by NICU just would not be able to provide the care Max and Addie would need.

So at 4 in the morning, Al and I followed the ambulance in his mustang to our new hospital, scared and overwhelmed. Within one day we had gone from feeling like this whole kidney thing surely wasn’t that big of a deal to seeing our daughter critically ill and realizing that driving an hour away to the big scary hospital was now part of our new very unwanted and terrifying reality.

Things were going to get better.  Quite quickly actually. We would settle into the big hospital and be so glad we were there. Addie would recover just fine and go on to have a great few months there.  Max would get help, great care and love there. But you could not have convinced us of that during the silent trip following the ambulance. Never had our beautiful ordinary dreams seemed so far away and never had our new reality seemed so unfathomably sad and frightening.

Chapter 6: The Red Robe Day

If they ever make a movie of my life, I would like to play the day we found out about their kidney condition very differently.  I would like to be calmly sitting at their bedside dressed in nice clothing, looking focused and asking intelligent questions.  I really hope they do not portray me quite like I was- as this emotional, confused, distracted crazy lady wearing only this red fleece robe and trying feabily to nurse a tiny neonate all while getting life changing news.  I really wish you could get a little warning that your life is about to turn upside down so you could prepare to look appropriate for such a pivotal moment. But of course you rarely realize you are about to be forever changed in advance.  I didn’t even realize it at the time.  It wasn’t really until a few days later that it really occurred to me that life would never be the same again after the morning of the Red Robe Day. 

One reason why I was so unprepared for this turning point was that we stumbled upon their kidney condition quite accidently.  Perhaps if there had been a build up of symptoms and we knew the search for the answer was on, I would have seen being sat down with news by the head doctor coming.  I would have known to always be wearing more than a red robe while awaiting results. 

Ironically their kidney issue was discovered while looking into Max’s respiratory and neurological issues, which would end up taking us a full year to actually diagnose.  While no answers were showing up to explain his breathing or tight muscles, some bloodwork showed there was low protein in his blood and high protein in his urine, when it should be the opposite.  The doctors got in touch with the kidney team.  The kidney team quickly recognized the problem and felt that he probably had congenital nephrotic syndrome or leaky kidneys that dump protein that should be in the blood into the pee.  These were conversations that at this phase we did not know were occurring.  The kidney team also knew this was a genetic condition so recommended they run a blood test on his twin sister.

Prior to the red robe day, I knew Max would be a while still before coming home.  Breathing did not seem to be his strength and I had already sobbed the whole way home from the hospital one day when they told me they doubted he would make it home by his original due date.  But at three weeks old, Addie was getting closer and closer to coming home.  She was just mastering eating and seemed to be champ at breathing, regulating her own temperature and being adorable.  It was likely only a week until the perfect crib with its pink bedding and fairy mobile was inhabited and my empty nighttime arms were filled with her. 

For that reason the part of the red robe day that really caused me to lose it was this incredibly unexpected and devastating news that Addie too was sick.  I will never forget sitting there awkwardly trying to pretend I was mature enough to nurse my baby while talking to the senior most doctor and trying to digest this strange news that Max had some problem with his kidneys and protein.  And then he told me Addie had it too.  And I had to give Addie to the nurse because I could not stop the tears anymore.  And if there is anything more embarrassing than sitting in a red robe breastfeeding, it would have to be crying in a red robe breastfeeding.

That day I did not really understand what I was being told.  I think he may have said the word dialysis at some point but even if I had paid attention to that I certainly did not know what dialysis was.  The idea of transplant was never mentioned.  There was just a lot of talk about losing protein and growth problems, poor immune system.  He looked sad a lot.  The only thing I really understood leaving that day was that this was not good and that my bundle of pink would not be coming home in a week.

We did what you do when your world starts to crumble, you surround yourself with loved ones and hold onto as much denial as possible.  We had lunch with my parents and tried to explain it to them.  We all agreed that losing protein did not really sound that bad.  How bad could it be?

But for all our attempts to stay positive and dismissive, we also went home that night and I cried while Al moved the crib back up to the nursery.  Our dream had vanished and we couldn’t wake up to the reminder of what we had come so close to. 

Chapter 5: Empty Arms

Knowing I had twins on the way, I had well prepared myself for the possibility of the babies spending time in the NICU or neonatal intensive care.  And by 'prepared myself' I mean I toured the hospital NICU, read many blogs of other preemie families and worried myself sick about it. Despite uplifting stories and encouragement, I had decided the NICU seemed like a terrifying and very sad place and I just prayed constantly we would not end up spending much time there.  On the other side of it now, I see that my fears were both justified and completely misplaced.  The NICU experience is emotional and difficult, but really not for any of the reasons I had so dreaded.       
   
Before I had a baby in the NICU, I imagined the worst part would be the beeping and the wires and the frightening tininess of the babies.  I had seen pictures on other people’s blogs and all that seemed terrifying, unnatural, sad.  In reality, it was not the incessant beeping that made me crazy.  In fact, that almost became comforting.  Like people who like to fall asleep to the hum of a ceiling fan, the sounds of the machines making sure my babies were safe were almost soothing.   The wires simply required acclimating to and within days I was confidently grabbing my children from their tangled technology without a second thought.  As for the skinniness of NICU babies, well when they are your own, they are simply the most beautiful things you have ever seen.

Max and Addie would go on to live for 8 months in the hospital in the neonatal intensive care unit.  And I would quickly learn that the heartbreaking part of having a baby in the NICU has nothing to do with the unit at all.  It has to do with the empty home they were supposed to be living in.  It was never the noise and beeping that was painful, it was the intense silence in our home all night long.  The nights we had prepared to be so sleepless were filled with nothing to do but sleep.   The sight of your baby in an isolette was nothing compared to waking up to the most perfectly decorated crib next to your bed, with no baby in it.   

3 am in the morning and the silence was broken.  But not by a hungry baby’s cries but by an abrupt alarm clock.  I get up and collect my breast pump and sit with empty arms doing what I need to do. Those moments were the heartbreaking part of having babies in the hospital.  The empty arms. The quiet nights. The perfect unoccupied crib.  

The doctors and nurses encourage you to spend time at home recovering from your own surgery, catch up on your sleep while you can and trust the nurses with your precious ones during those wee hours.   Well-meaning people warn you against wearing yourself out emotionally or physically by staying long hours by their NICU bedsides.   They implore you to go home and rest, as if home was anything like what it used to be. As if home wasn't the loneliest place in the world now.  It was never the NICU itself that broke my heart, after all that was where my babies were.  Scary things happened there, sure, but I also fell in love more and more each day sitting in those NICU rooms.  It was the drive home that broke my heart.  It was those painfully empty arms every night and every morning that I was not at the hospital.    

I learned to cope by spending nearly all of my waking hours at the NICU.  In fact, before long the NICU started to feel not just like their home, but my own.  I loved their nurses and counted them as friends.  I felt supported there, and I felt whole there.  The place I had once dreaded and been convinced would be so sad had become the only place that didn't feel empty and lonely.  The NICU to me never meant alarms and tiny babies.  To me, the NICU meant full arms and a full heart.  

Chapter 4: The begining of a terrifying and beautiful bond

I held Addie for the first time on Christmas Day when she was 3 days old.  She was breathing completely on her own, on ‘room air’ as we quickly learned to call it in the hospital.  She was super skinny and still red and had a little IV taped to her hand but I had never seen anything more beautiful.  I was so proud holding my daughter in my arms. She settled in to the crook of my arm nicely and stared at me with her gorgeous eyes.  I would stay up at the hospital for hours with nothing to do but hold her and stare into her eyes.  Holding her felt easy and it made the lonliness associated with their hospital stay just seem to melt away.

Addie still has that effect on me.  At two and a half, she has learned how to throw her arms around my neck and press her forehead against mine and give me kisses.  She slides under my arm with her blanket when she is tired and we both smile contentedly as she fits into me as well as she always has.  And just like that first Christmas holding her, I stare at her in amazement and my stress, sadness and worry just shed off of me. 

I held Max for the first time on New Year’s Eve when he was 9 days old.  I did not get to hold him on that Christmas Day.  Instead I watched as he coughed up blood and looked terrified.  When he was 3 days old, he had a lung bleed and I was there when blood started coming up his breathing tube and all his vitals started to drop.  I was still wobbling around after my C section and completely intimidated and confused by the NICU.  It was not yet a familiar environment and I did not understand what any of the alarms going off meant.  I had never felt as helpless as I did in that moment.  I remember feeling that in one day I had experienced the two extremes in motherhood- I had felt the joy that love for your child brings as I held Addie and I had felt the terror that love for your child brings as I watched Max struggle for air.  I knew that day that the love of a mother is truly indescribable and unlike anything I had ever experienced.

After I went home that night, the nurse called me in the very late hours of the night to tell me with relief that Max's brain ultrasound following this event did not show any bleeds.   She was easing a fear I had not known to have.  So new to my changed world, my mind did not yet know to worry about brain damage following such an incident.  I had merely assumed once he was stable and no longer coughing up blood things would be okay again.  While I had not known there was any reason to fear otherwise, I nonetheless took her reassurance gladly and laid that issue to rest.  For over a year at least- until a team of neurologists would take us right back to that night and cause us to question whether that Christmas lung bleed was in fact the beginning of a new set of heartaches that we could not have imagined that night.  Now I look at that event differently, now I feel much less sure of what really happened to Max at three days old.  But at the time, the event seemed significant only because it showed me just how fragile my tiny new babies were. 

Max stabilized by the next morning but he was put on ‘time out’ for several days afterwards.  He was on very high ventilator settings and given lots of sedatives and we were supposed to let him rest and minimize stress for him. I would watch him there in his incubator all tiny and still and felt scared to even touch him.  I was thankful I was able to hold Addie and passed time with her in my arms watching him and worrying about him.

Finally when he was nine days old he came off the ventilator and went on to CPAP which is a breathing machine that goes over the nose instead of down the throat and that provides less support.  The nurse decided I could hold him and I was so excited.  She carefully placed him on my chest, trying to position the tubes from the breathing machine just right.  Max arched his back repeatedly and tried to pull his legs up to make himself into a little ball.  He seemed unsettled and I was nervous.  I moved him around and adjusted myself and talked to him and soothed him and wanted more than anything to make sure my arms were a comfortable place for him.  I remember feeling so much love and so much concern not knowing how to get him comfortable.  I remember feeling like he was the most precious tiny fragile thing I had ever held and that I loved him fiercely but not without fear.

And Max still has that effect on me.  Now as I lift his heavy floppy body into my arms, I take care to make sure I position him just right.  He still arches and squirms continuously and I move my body and his to make sure he is as comfortable as possible.  Unlike then when I was not sure if he liked being in my arms, he now will flash me a huge smile so I know that while finding a physically comfortable position is challenging, he is thrilled to be close to me.  But although far from tiny now, I still see him as the most precious fragile thing in the world.  I still worry about whether I am doing the right things for him and whether he is going to be okay.  

From the first time I held him, I have formed a terrifying and intense bond with Max.  I have known that he is precious and unique and fragile in a way that other babies are not.  I have longed to know how to soothe and protect and comfort him.  I have wanted to heal him.  I have wanted to provide a place of contentment for him.  And I have worried every single time.  I have held him and been scared of not doing the right things for him.  I have held him and not been able to stop the tears from falling as I do.  I have cradled him and simultaneously felt joy, fear, love and grief.  The way I would watch him that first week of his life, full of love and wonderment and so scared about whether he would be okay is still the way I look at him. 

Loving someone you are not sure you will get to keep is intense.  From the very beginning, Max’s future seemed uncertain and I have loved him not knowing.  And nothing has changed really.   It is still the most terrifying and beautiful bond in my life. 

Chapter 3: A Silent Delivery Room

I blame Hollywood for many things.  Not least of all, my misconception that the day that my first child was born would be the happiest day of my life.  I knew I’d scream and cry and probably threaten my husband but once that was over, the beautiful touching music would play, tears would flow, photos would be taken and pure joy would take over.  And really it is not even just Hollywood’s fault because I had lots of women tell me enthusiastically about how it was the best day of their lives.  Or at least second best only to their wedding or something to that effect.

So let me start by saying the day that Max and Addison were born was not the happiest day of my life. It was not the second happiest day of my life.  Were it to make it even on a top 10 list it would be in the top 10 worst days of my life.  Which is almost okay to admit because I never even saw them on their birthday.  I first met them the next morning after they were born.  So nothing about the night of their birth matched any sort of Hollywood scene I had anticipated.

The day they were born I was 31 weeks pregnant exactly and had no inclination they were on their way. Around 27 weeks I had been put on bed rest following some indications of pre term labor but two weeks later, those issues seemed to have gone away and I did not seem to be showing any signs that the babies were anything but snuggled in to stay.  I went to the doctor who felt very encouraged I would make it to at least 34 weeks.   I waddled along to go eat lunch with my family.  Then I went with them over to their brand new house.  Full of brand new furniture.

And I sat down on a beautiful red leather chair.  And my water broke.  Just like that.  Completely unexpected and unannounced.  On a brand spanking new expensive red leather chair.  So as a plus, even though there would be no sappy Hollywood ending, at least their birth would begin with a nice hilarious scene.

As we then drove to the hospital, I was just completely shocked and confused and upset.  I just kept saying ‘but it’s too early!’  There was no excitement, only intense fear.

More comedy would ensue at the hospital where they seemed convinced that I had instead merely peed my pants and decided to cover it up with a whole elaborate water breaking story.  So I had to wait for an hour while they ran tests on the fluid to prove that I had not merely wet my pants.  At some point in this hour, the pain came.  Which you would think I would realize were contractions but I was in far too much denial to acknowledge anything that real and was just annoyed by the pain and everyone who spoke to me.  On the top of my list of annoyances was that they would not let me drink or eat anything… just in case I ended up needing aneathesia.  Which seemed like the most ridiculous possibility I had ever heard so I proceeded to beg everyone who came into the room for Diet Coke.   I am pretty sure I spent more time on the night of their birth trying to sneak contraband beverages than I did preparing for what was about to happen.

Within a couple of hours of waiting for the world’s slowest ultrasound tech to come and look around, I stopped groveling for food because I was in far too much pain.  By the time they told me that there was nothing they could do to hold the babies off because they were coming that night, I was more relieved than surprised.  When they then came and told me I would need general anesthesia due to a low platelet number, my only question was ‘how soon?’ Had I been in less pain or known about this prior, I would have mourned not being awake at their birth.  I would have lamented missing those first put the baby on your chest moments.  

But some time during the contractions, fear and impossibly long ultrasound, I stopped caring that my babies were coming 9 weeks early.  That I was not going to be awake for their arrival.  That my husband would not be allowed in because I was under.  None of that mattered as much as stopping the pain.  At the time I just saw the anesthesia as an end to the agonizing cramping.  What I now realize was how much it protected me from a far greater pain.  

Max and Addison entered the world without a sound.  'No respiratory effort' is what is says on their medical charts.  What that means is that it was a silent delivery room.  Silent until the panic began and they got my pale limp babies hooked up to machines that would start to make them look like the cute pink squirmy things that I would see many hours later.

A silent delivery room, babies born not breathing- there is no room for scenes like that in sitcoms.  Those are not the images of the best day of your life.  Or second best. 

But thankfully I had no idea.  I was completely out.  No one even told me.  I would learn about the silent delivery room weeks later when I heard doctors giving their medical histories.  By the time I met them the next morning, they seemed little and perfect and I didn’t start my motherhood journey terrified. That would come later.  But I am grateful I didn't know in those precious first moments of motherhood about their delivery; I am so thankful that the anesthesia sheltered me from a fear and a pain I just was not ready for yet. 

Their unexpected and dramatic early entrance seemed so surprising at the time, although looking at it now it seems only completely fitting.  As if to foreshadow all that was to come, their arrival was as atypical and memorable as their lives are proving to be.