Chapters 2 and 3

(...here I continue on with the book for Ada, a chronicle of the first five years of her life from my perspective...)

Chapter Two: Waiting for Your Birth

I mentioned in the last chapter that we got pictures of you in your first ultrasound, when you were 20 weeks along growing in my tummy.  For 20 more weeks you were in my tummy, growing a little bit every day.  My tummy got bigger too and you probably got more and more smooshed inside!  Every month or so, daddy and I would go again to Dr. Nydam’s office for another echocardiogram.  She wanted to keep watching your heart as it grew for many reasons.  The more the doctors knew in advance, the better prepared they would be for helping you after you were born.  But as long as you were in my tummy, you were safe and protected. 

This was a time of a lot of emotions for Daddy and me.  We were very excited, knowing that soon we would become a family of three with a precious little baby to hold in our arms!  But we were also very nervous because the doctors explained how serious it was to have a baby with major heart defects.  The truth is that we were kind of expecting that we should have an easier time with this baby, since the baby that was in my tummy the year before you were born died before it could be born.  I maybe even felt like I deserved to have healthy baby with no problems.  I wanted God to give me the easy path, and He didn’t.  I spent a lot of time asking God why you had things that were wrong with your heart.  But I also knew deep down that sometimes life just is really hard, and God helps us through the really hard times. 

In the morning of June 14, 2011 I had invited my friend Marisa over for some hang out time.  We were going to go swimming, but I didn’t feel great, so she brought me some food instead and we ate a little lunch.  I would feel kind of icky every few minutes, and she calmly told me that maybe this was the little baby getting ready to be born.  Sure enough, I was in labor, but hadn’t even recognized that myself! I had just thought I was sick from eating at Garbanzo a couple of nights earlier!   I called Daddy who was painting and he hurried home, and I called the nurse at the hospital to say that I was coming in to have a baby.  My mommy had already decided that she had better buy a ticket to fly out to Denver from Minnesota, so she was on the way, and would make it just in time for you to be born. 

 

When we got to the hospital, the doctors and nurses took good care of me.  Daddy was there all the time too, and we had family and friends in the waiting room, very excited for you to be born.  It was a long day and long night, but finally at 1:45 in the morning you arrived into the world.  Even before I could see you, I could hear your cry, and I got tears in my eyes.  My little baby was now out of my tummy and into the world, and you were crying!  I was so GLAD to hear your cry, too, because it meant that you had energy and strength to put up a fight.  It was your first time to feel cold air, your first time to see bright lights, and everything was new.  The nurses checked you over quickly, then swaddled you up and put you on my chest.  Now it was my first time to SEE you!  You were perfect – beautiful dark eyes looking up at me and dark hair on your head.  Your fingers and toes were teeny tiny and so precious, and you would wrap your fingers around mine.  Daddy announced to everyone in the Operating Room that your name was Ada June, and everyone loved the name.  Soon it was time for the doctors to take you into another room for your first echocardiogram outside of my tummy.  Daddy stayed with you the whole time as Dr. Miller took pictures and watched your heart beating on its own.

Before babies are born, they rely on their mommies to get them the food and water and oxygen that they need.  So this was a huge test for you- we knew that it was very likely that you would need to have a surgery almost immediately after being born, but in the hours and days that followed, it became clear that you were going to be able to skip the first surgery in the series.  This was largely because of those holes that were between your atria and ventricles.  They were wide open and your blood was able to circulate and be pumped to your lungs.  If I remember correctly, it was also good that you had pulmonary stenosis – this is the narrowing of the pulmonary artery on your heart.  This was a huge answer to our prayers.  Babies are so very small, and so their hearts and other organs are also very small, so a surgery on such a small person would be very hard.  If there was any surgery in the series of three that we wanted to skip, it would be the first one, and thank the Lord, we were able to!  You had many doctors watching over you carefully and helping to advise us and make decisions for you.  The first 24 hours of your life you were in a part of St. Joe’s Hospital that is called the NICU – Neonatal Intensive Care Unit.  It is a quiet and protected part of the hospital for babies who are born early or with health problems and it helps the babies to be safe and cared for. 

Daddy was there with you almost all the time, and I came to visit you when I could.  I was in another room of the hospital recovering and resting, but I was so excited when the nurses discharged you – after only one day! – to my hospital room!  We were now a family of three with a sweet baby girl who looked like a sweet little angel.  Three days after you were born we were able to go home, together to our apartment.  This was such a relief.

Chapter 3 – Home

Ada, when we brought you home for the first time, we were delighted!  Delighted and scared.  It is normal in life to feel more than one feeling at the same time, sometimes.  We were delighted that we could bring you home, that you were alive and beyond that, you were healthy enough so that you could skip your first surgery.  You cried most of the 45 minute drive home from St. Joseph’s hospital, so we got our first taste as parents of how to console a crying baby.  Some people say that mommies just know how to soothe their little ones and calm them down, but I will say that especially in those first days of your life I was just trying everything I could.  Daddy and I learned that you loved to sleep with your arms above your head, so even when we had swaddled you up tight for a nap, you would somehow sneak a hand up by your face.  You were persistent!

You usually slept in a bassinet by the side of our bed, even though we had another room next door all for you with a crib and the glider from the Eaves family.  Above your crib I had page after page of messages from family and friends all over the country who had heard about you and your special heart and had started praying.  You had received so many prayers and so many gifts even before you were born!  Your closet was full of precious outfits and dresses.  Since you were born on her birthday, the grandma downstairs from our apartment brought us a huge box of Pampers diapers!  This was a very special gift because we knew she didn’t have a lot of money, but she spent her money on expensive diapers for you, the precious baby we were waiting for!  You also share a birthday with my friend Jessie who made a contribution to your college fund – how fun!  She is the one who took the beautiful newborn pictures of you.  Many people far and near care for you, Ada.  Friends brought us meals, tasty meals, which helped so much as daddy and I were exhausted and focused on you!

All was well.

It was hard, though.  And I wasn’t sure if you were okay all the time.  We watched you carefully, all day and sometimes in the night, too.  To have something wrong with your heart is a big deal, and we all knew that.  I spent a lot of time worrying because deep down, I didn’t know if I would know when you weren’t doing well.  We knew you were getting less oxygen than normal, and you couldn’t talk yet to be able to tell us how you were feeling.  We checked on you many times every night to see if you were still breathing.  It was very hard to relax and trust that God would take care of you.  Sometimes I would watch other mommies and how relaxed they seemed with their babies and I wished that I could relax, too.  But I knew that I needed to take care of you and protect you the best way that I knew how.

When you were 6 weeks old, we brought you in to the doctor for a regular visit.  We weren’t sure if feedings were going well for you or not.  You hadn’t grown very much when the nurse weighed you and looked at your growth chart, so Dr. Berents, your pediatrician, had us give you a bottle in the office.  It took you 45 minutes to drink 2 ounces of milk.  We didn’t have any other babies, so we didn’t know that that is way slower than normal.  What that meant was that nursing and drinking from a bottle was a lot of work for you and your heart.  We were so sad!  We were sad that maybe you were hungry but too tired out to do the work to get the food!  So starting then, I would nurse you 7-8 times a day – every 3 hours or so – and then we would have a little bottle of milk to give you right away afterwards to “top you off”, since drinking from a bottle was a little easier than nursing.  Also, we would add some formula to the breastmilk in the bottle so that it had more calories and would give you more nutrients with less work. Then, after that I would immediately pump so there would be milk for your next feeding, and then I or we would clean all the bottles and pump parts.  All in all, this process took about 8 hours of every day, and it was very hard.  We kept records every day of the time you would eat, for how long, then how much bottle you would drink.  Day after day, week after week, month after month. 

This continued until you were 4 months old.  You had picked up a cold or a stuffy nose and were having a tough time nursing, so for about a week we only gave you bottles.  After that week, you gave up nursing, and I don’t blame you – it was too hard for you!  Bottles were hard enough!  You should’ve seen all the little tricks we used to try to get you to drink your bottles!  We would distract you with a tiny hand held fan (that also could cool you off, poor thing – you would get so sweaty from all the work!) and we would spin your bottle every so often to keep you awake and drinking.  I felt the pressure that we needed to get you to grow.  The bigger you were at the time of your next surgery the better, as it would mean that the surgeon would have bigger parts to work on.  So if you had a feeding that didn’t go well, we got nervous, and if the next one also didn’t go well we would get stressed out, again and again.  I would go in to a breastfeeding support group every few days and weigh you, but I would also get so sad and scared when you wouldn’t grow.

But half ounce by half ounce you did grow!  We had a party when you were 10 pounds – on September 6th, and by the time of the surgery you were 12 pounds.  It was only then- when you were 5 months old – that Dr. Nydam mentioned her amazement that you had breastfed to 4 months old, longer than any of her patients with the same heart anatomy.  I felt… proud?  Maybe.  You got as big as you could, and then when you leveled off and weren’t gaining any more weight, Dr. Nydam said it was time for the surgery – the Glenn.

The Book begins...

The following is the start of a book for our daughter.  I am writing for her sake, as I am coming to realize that all that we have been through in these last years are her story as much as they are our story, yet many of the details she has never heard.  Some day much of this will fade from my memory.  But for now it is oh so fresh.  In fact, I am finding that it is therapy for myself to go back and process it all.  Many of you may be able to relate that while in the midst of stressful times, we push on and push through and do what needs to be done, but it is only later once life settles back into a new normal that we can get a grasp of what we survived.  And try to make sense of it.  Some of these details may be obnoxious to wade through, but I post it all here - mostly as a motivator to GET IT DONE!  Feel free to muddle on through with me!

Dear Ada,

This book is a special book—a book about you!  Today you are 4.5 years old, but you are very excited for your next birthday.  You want to count how many days there are until your birthday, and each time you make a new friend, you wonder if they will come to your birthday party.  It is hard to move to a new place and it takes time to make friends.  I feel just like you- sad and lonely some days and missing Littleton and our friends and family there.  But some days we have lots of fun with family here and have fun new places to see and exciting new things to do.  Remember our trip to Duluth?  You had so much fun swimming in the pool and singing by the lighthouse—and James had so much fun throwing rocks into Lake Superior, remember?

I am proud of you for so many things.  You are a very brave, strong, loving, and intelligent little girl.  This book is the story of these last five years of your life and will help to explain why Daddy and I are so thankful for your life and proud of you for persevering through difficult times. 

And remember Joshua 1:9…

CHAPTER ONE: Mommy’s Ultrasound

When you were still in my tummy, Daddy and I went to the clinic to get an ultrasound, which is a fancy machine that can take pictures of babies in their mommy’s tummy even before they are born!  We were so excited because we knew that on that day in the end of January 2011, we would find out if you were a boy or a girl!  We couldn’t wait!

As the technician took the pictures, she checked off boxes in her computer, checking to make sure that she could see every little part on your body as it was forming.  The Bible says that God knits our body together while we are in our mommy’s tummy.  He puts us together!  The lady looked over at us and exclaimed, “Looks like it’s a girl!” We were so excited!  It was such a great surprise.  And we already knew what name we would choose for you--- Ada June.  What a lovely name for our sweet baby girl!

The technician kept taking pictures of you and checking off boxes, but she was pretty quiet.  Daddy and I got quiet too and started to feel a little bit nervous because the lady didn’t seem very excited.  I noticed on her computer that there was one box that she filled out a little differently than the rest – she put a question mark in the box by “4 chamber heart”.  I was scared.  We left the clinic and I cried as I hugged Daddy.  I was worried that maybe something was wrong with my baby’s heart.

The next morning, we had auntie Rachael and Grandpa Phil and Grandma Kim over for breakfast to tell them the news that we were having a little girl!  We knew they couldn’t wait to find out, either.  We made wild rice pancakes with pink whipped cream so that they would see the pink and know that you were a girl!

While I was flipping the pancakes, my phone rang and it was my nurse.  She told me that the doctor had looked at the pictures of my baby and would need to see me again because something was missing from your heart.  Daddy and I talked and cried and went back to a different doctor that day, a perinatologist.  That is a doctor for babies who are still in their mommy’s tummies.  Dr. Stark was his name- he was working not far from where we were living.  He was very talkative and kind, but he told Daddy and me that having a baby with a special heart was going to be a very hard thing.  He told us to find people to help and support us.  Dr. Stark gave us some very important advice and I believe that Jesus used him to remind and encourage Daddy and me to ask for help when we needed it, and to love each other well even in hard days.

The next day we went to another doctor, one that you remember- we met Dr. Nydam!  She was kind and loving and took time to explain everything very well to us.  I had an echocardiogram – just like you are used to but since you were in my tummy, they used their wand on my tummy to find your heart and take pictures that were very detailed.  But they didn’t let me watch a movie like you get to and I didn’t get a toy when we were done.  But that is okay! Dr. Nydam is a pediatric cardiologist – a doctor that specializes in looking at children’s hearts.  She was the one to officially diagnose your heart, telling us how it is different and what would need to be fixed.  She used a lot of very big words, but she explained things well and made sure we could understand what she was saying.  She was a very special doctor to us, and we miss her a bunch.

I will show you a couple pictures here – a picture of what a heart looks like if you were to open it up, and then a picture of what YOUR heart looks like.  A normal heart has four rooms, two rooms stacked on two rooms.  The top rooms are called the right and left atria, and the bottom rooms are called the right and left ventricles.  Big words, right?  We can study the pictures together and you can learn all you can, just like Dr. Nydam did when she went to school, and just like Daddy and I did after we learned about your heart.  The picture of your heart was sketched by another doctor!  You sure have had a lot of great doctors in your life!  His name is Dr. Miller, and he works with Dr. Nydam.  He was the cardiologist that was on duty on the night that you were born.  He knew that I was about to give birth, so he rushed over to the hospital, and was there to do your first ever echocardiogram, when you were only a few minutes old.  He sketched out a picture of what your heart looks like, and then gave it to Daddy and me to keep!

Hearts are amazing organs.  As I have studied the heart a little bit these past few years, I am amazed that babies can be born with such complex parts working together perfectly!  God has designed us so wonderfully.  Psalm 139 says that we are fearfully and wonderfully made and I believe it.  After meeting with Dr. Nydam that first time, she explained that you, our sweet baby, had a “complex congenital heart defect”.  What that means is that there are quite a few parts of your heart that either didn’t form at all or that they were mixed around from the way that they are put together on a normal heart.  I will explain them now and even if you don’t completely understand them all now, you will have this book to look back at some day when you are curious.

 

First of all, your heart has two holes in it that aren’t supposed to be there.  I hope you don’t mind me talking about your heart this way- you have a heart that is special, unique, different, and I believe that because of it you are the person that you are.  You are brave, and you have persevered physically to overcome difficulties that other kids haven’t had to do, and even without knowing it.  There is normally a wall between the right and left sides of the atrium and the ventricles, but in your heart there is a hole in each of those walls.  That means that the blood that is pumped into your heart from your body that needs oxygen can mix with the blood that is coming from your lungs full of oxygen, so that is kind of like mixing a cup of water with a cup of milk.  It is all still helpful liquid, but the milk is not quite so rich.  And your blood is not quite so full of oxygen.  Some children are born only with this heart defect, and so what the doctors do is to go in and stitch up the holes.  But in your heart, the holes are actually a good thing because of the other defects!

When I was pregnant with you, I still was teaching a little bit and I remember a mom of one of my students coming up to me and telling me that she was praying for the holes in your heart to close while you were still in my tummy.  I was kind I hope, but I was frustrated, because she didn’t understand your heart enough to know that your heart needed those holes to stay open- wide open!  God knew what you needed, and thankfully didn't answer that lady's prayer.  There is a life lesson for you - sometimes God answers our prayers with a "no" because He knows better that we do about what needs to happen.

Another part of your heart is that the tricuspid valve didn’t form.  It is the one way valve/door from your right atrium to your right ventricle.  Since your heart doesn’t have an opening there, ordinarily it would mean that the blood that is coming back to your heart from your body – blood that needs to have some oxygen after working so hard – would get stuck and wouldn’t be able to get to the ventricle so it could get pumped out to the lungs for more oxygen.  But since you do have holes, it meant that in those early months of your life, you were able to do fairly well!  Blood that needed oxygen could get to the ventricle to be pumped out to the lungs through the sneaky passageway into the left atrium, then down into the left ventricle, then pumped out of the heart towards the lungs and that sweet, sweet oxygenation!  This is a condition called Tricuspid atresia, or another label for it is Hypoplastic Right Heart Syndrome.  

And there’s more!  You were also formed with another condition called Transposition of the Great Vessels!  On the top of your heart there are two main blood vessels called the aorta and the pulmonary artery.  The aorta brings blood from the heart to the body, and the pulmonary artery brings blood from the heart to the lungs.  In your heart’s amazing anatomy, these two vessels are switched around, attached on the opposite sides of your heart.  So your pulmonary artery, instead of coming from the right side of the heart actually comes from the left side of your heart.

Finally, near where it attaches to your heart, there is a narrowing of your pulmonary artery.  This is called pulmonary stenosis.  And there you have it, my Ada June.  These words are big, and may be hard to understand today.  I have to study hard to remember it all, too, but as you look at your chest and see the line there from your surgeries, I want you to remember that God was with you from the very beginning.  He made you just the way that you are and has a plan for you.  The day after our ultrasound, I was reading in the Psalms, and the reading for the day included these verses:

                “Yet you brought me out of the womb; you made me trust in you even at my mother’s        breast.  From birth I was cast upon you; from my mother’s womb you have been my God.” Psalm 22:9-10

I cried when I read the words.  And I knew that they were true.  God has been your God from day one.  He is the one that we can trust throughout all the tough times in life.

Advent Thoughts or An Exhausted Mother

Well, I started bawling in the car as I pulled into the garage this morning after bringing Ades to school, so I figured it was maybe time to internally process a bit.

It was surely affected by the terrible night of sleep last night and my exhaustion – James had a rough night with what sounds like what I imagine croup must be – and I am not operating at 100%.

And it was also influenced by the Christmas music I was listening to and the yearning for Hope.  The fears and tragedies in our country coming home with me as I try to think and feel and imagine what others are going through, and alternately wanting to turn off my heart because I don’t have enough.  I can’t feel all the feels.  Too much.  Too little.

As I held James, poor James, last night and he wheezed and coughed and cried, I was reminded how very very sad it is to have a little one in pain.  And then I thought about Ada, sleeping peacefully in the next room, and how months ago I would have been *terrified* for her, as I fought hard for four years to protect her from sickness, primarily of the respiratory type.  She had two flu seasons of Synagis shots, protecting her body from RSV.  And each season I would wince when I heard a hacking cough, and move to redirect our path away from those who were ill… which was hopeless once the sick came into our home and family.  Yeah, I was a bit over the top and protective.  But who wouldn’t be?  Considering the situation, considering the alternative.  

We missed play dates.  Nick and I rarely attended church together that first year of her life, as one or the other was on Ada duty in order to keep her from the germy nursery and snot-nosed little cuties she would come in contact with.  Little by little we could relax our stance, but the fear was still there.  My own personal loneliness or isolation or sacrifices were real – but honestly, it was a no-brainer.  We didn’t know what we were doing and didn’t know what the outcome would be, but we knew that Ada’s heart condition was serious and worth any amount of protection and care.

Two weeks before Ada’s last surgery, James got pretty sick.  Fever that didn’t go away, ear infection.  He shared the ear infection with Ada and we prayed with such fervency for her.  The day before Ada’s open heart surgery, James was so sick that I called his pediatrician – a professional that lacked a specific set of
“bedside manner” skills that would’ve made the call less sucky and heartbreaking, as he said that they would need to see James in the morning.  Yes, I sobbed then, too, and explained where Nick and I would be.  James’ aunties brought him in and eventually the antibiotics helped him out.  Our dear boy.  But we needed to be with Ada June in those days.

But today.  Five months later, and we have heard from Ada’s new cardiologist in Minnesota that we can treat her like normal.  Normal?  What is THAT?  I don’t know how to do normal.  So far, normal has been coming to a place where I am scared and fearful, and I have to tell myself to calm down.  Everything will be okay.  Someone drops off their sniffling child in the preschool before us, and explains that the boy’s cold is in its second week and just won’t go away, so here he is…. And I drop off Ada, and pray, and tell myself to let it go.  She will get a cold, and she will be fine.  And that is normal.  Or James gives his sister kisses on the mouth to say he is sorry for hitting her on the head with his hand/toy/book/crochet hook/spoon/ball – and then he wakes up in the middle of the night with some crazy respiratory coughing and wheezing.  Lord help us.  But this is normal life.  

So I was exhausted. The hours of sleep we got last night could definitely be counted on the fingers of one hand.  And I heard some Christmas music – I don’t even remember what song it was!  But I wept aloud, with only James as my witness.  Oh, I need Jesus.  I need Him to come save me and save the world.  It is my life and my family, and it is the grieving parents and the scared refugees and the lonely coworker and the momma in the hospital watching her son fight and the momma-to-be carrying the baby whose condition is so like my baby’s was.

And we all need HOPE.  We do.  Some of us are desperate for it.  Oh, cry out, my soul.  Too many moments and days I am trapped in fear or fatigue.  Or busyness!  More often, busyness.

And in despair I bowed my head; 'There is no peace on earth,' I said; 'For hate is strong, and mocks the song of peace on earth, good will to men!'  Then pealed the bells more loud and deep: 'God is not dead, nor doth He sleep; The wrong shall fail, The right prevail, with peace on earth, good will to men.'

 

Truly, He taught us to love one another.  His Law is love, and His gospel is peace.  Chains shall He break, for the slave is our brother, and in His name, all oppression shall cease.

Sweet hymns of Joy, in grateful chorus raise we.  Let all within us praise His holy name.  Christ is the Lord.  O praise His name forever, His power and glory ever more proclaim.

O Come, o come Emmanuel...

What a ride...

Over a month has now gone by since my last entry, and it is almost unbelievable.  I just crept in to the kids' bedroom to find Ada soundly sleeping.  Peaceful.  Normal.  I don't know how many times in her life I have crept in to see how she was doing as she slept... checking to see that she was still breathing, still alive.  Yikes.  Seems a little morbid?  Yet I have talked to many other parents about this habit, and it seems to be a pretty normal thing- though my assumption is that someday, some year I will be able to sleep through the night again?!  To lie down and sleep in peace... what a dream come true!

Ada's Fontan procedure has become a part of her history, praise the Lord.  The looming event is now past, and it really seems now like a crazy dream. Tomorrow it will have been five weeks ago.  Aaaand it feels like a lifetime ago.  A huuuuge part of that is the fact that our house is now half packed and we are 2 weeks from becoming Minnesota residents.  Yikes again.

The short story is that Ada's second and final open heart surgery went as planned on June 22, with little to no major complications resulting.  She had a stay at Children's Hospital of 12 days, which was well within the realm of normal.  Twenty-four hours after surgery was completed, the nurses had Ada up and WALKING.  As the days went on, she was able to take less pain meds and showed more of her personality (it was a celebration to hear her feisty self return!)  The last few days we were simply waiting on her chest tubes to slow their draining of fluid so that they could be pulled.  Since being discharged, Ada has gradually weaned off oxygen as well, and is only given a diuretic once a day.

She can run.

See, this is the thing.  Ada is four, and our eldest child.  So we have compared her activity level with other kids, but also have not known what is just her personality, and how she has been affected by her heart anatomy.  Before the surgery, Ada would run - maybe a half a block? - and whine and ask to be carried.  Or she would start to walk - saunter, really - but would get winded fairly easily or quickly.  Now she can run and run and run!  (We may have spent more than we should have on a pair of toddler shoes that will only fit her for a few months, because CELEBRATION, that's why.)  And she can dance and dance.  She has not had a shift in her behavior or attitude or personality, which I was wondering about... wondering how she had been affected by perhaps feeling somewhat crummy all the time... but we are so thankful anyways to have our spitfire of a daughter back home.  Her spunk was so evident in her hospitalization, and I have to think that the strength of her character has served her well these past years.  I paraphrase Napoleon (?) when I say, "Let her sleep... for when she wakes, she will move mountains."  Watch out, world.

This parenting thing is not for the faint of heart.  I remember how scared and overwhelmed I felt when we walked out of the hospital for the first time with Ada, feeling as if we were certainly breaking some law, and that I was going to majorly mess something up for her.  The first year of her life was a struggle first to get her to grow, and then post-surgery to keep her healthy.  And the next cold and flu season was the same story.  And this winter and spring was laughable (I wasn't laughing though, let's be clear) with how much of the time we had sickness in our home.  Seems as if a certain young family member liked to touch every germy thing and put everything in his mouth.  And then another young family member could not not kiss her brother.  Figures.  Oh, the work of it - the work of caring for my children.  And the work and worry and avoidance and effort involved in protecting Ada and keeping her healthy for the surgery that would change the trajectory of her life.

And there I was, a few days after surgery, sitting in Urgent Care, receiving the news that I had a 103.7 degree temp (that is Fahrenheit... for those of you looking for a Celsius conversion, I am pretty sure I was at about 9,000 degrees.)  Strep, perhaps.  The doctor forbade me from going back to Children's to be with my daughter until I had been temperature free and on antibiotics for over 24 hours.  Suddenly, I was the danger.  I wept as I drove home, knowing that as much as I wanted to be with Ada and felt that she needed me in the days of recovery, I also knew that I could put her at great risk if I ignored the warnings and showed up at her bedside.  Two days later, though, I was back.  Nick was a rock star, staying at Ada's bedside throughout, night and day.  It was exhausting, for sure.  We were relieved to finally be released as it meant that we wouldn't be interrupted in the middle of the night for checking vitals, etc.

We had been able to meet with the surgeon prior to surgery, and he talked us through our consent forms we needed to sign.  We watched as he filled in the blank for our other options... none.  "You don't have to do this surgery, but if you do not, Ada's oxygen levels will continue to drop."  He was honest about possible risks and complications.  It was very solemn, yet we knew that this Terrible that was looming in front of us was necessary and couldn't be side-stepped.  Our Ada-girl would have more energy for life.  Four and a half or five hours later, a team of excellent surgeons, doctors, nurses, and assistants had finished an amazing, miraculous surgery that is unbelievable and that has already helped my daughter to RUN.  Perhaps later I will write more of the particulars of the surgery and of Ada's heart anatomy for those who are interested.  But for now, I sit amazed that we are on the other side of this thing.  Hugely stressful, scary.  But so amazing.  We are so thankful for all the prayers and support and love from so many of you! 

Yesterday, Tomorrow, and Monday

Yesterday was Ada’s heart catheterization at Children’s Hospital.  All went very well, though the day was pretty tiring and was a longer ordeal than I had been expecting.  The procedure is a same day event – Ada was put under anesthesia and the doctors fed a teeny tube up through her femoral artery and down through her neck one (love how medically sound I am) to access her heart and measure pressures, take pictures, and in general prepare for the upcoming surgery so the surgeon knows exactly what he is getting in to.

For me, the most difficult portion was bringing Ada into the OR and holding her while they administered the first sleep meds through a mask.  She had been all sweetness and calm until we got into that bright and unfamiliar room with lots of people  - then she clung to my neck and wouldn’t let go, and fought it all the way until the meds kicked in – really, only about a minute or so.  Nick and I agree that we are still glad we could be with her when she fell asleep and when she woke up.  

While taking measurements, Dr. Miller noticed that there were a couple of collateral veins that had formed, one that would need to be blocked off so they inserted a coil into the catheter and the coil will block off the path, preventing blue blood from mixing with red blood.  That also went just fine, thank the Lord.

Ada also had an EKG and an echocardiogram while she was still sleeping, so that will be one less thing for us to do with her tomorrow in her pre-op appointment.  She came out of anesthesia just fine, but quite thirsty and hungry and it was difficult to keep her still and flat on the bed for the four hours that were required to make sure that she would not start bleeding from the sites in her neck and groin.  The night went well, though before falling asleep, Ada did weepily ask about the man with the mask and why she was holding on to my neck.  Poor girl remembers the experience of getting the sleep meds, so we are hoping that this next time around the anesthesiologist changes the plan a bit, as Ada has most adamantly stated that she does not want to go back to the hospital because of the man with the mask.  Oh dear.

Tomorrow, Friday, we go back for pre-op, for blood draws, chest x-ray, consultation with the surgeon, physical, and a tour.  It should be shorter and less stress, though the blood draw portion of life is about the low of the low for me.  Yes, I have passed out getting an IV, so I am a wee bit needle shy.  Ada is seriously a champ, you guys.  And as I walked around Children’s yesterday a place filled with so much hope as well as pain we saw many sick kids and their care-persons, I couldn’t help but see the strength and resilience of these little ones.

Monday is the surgery, 8:30am, I am pretty sure.  We had some good conversations with a doctor and a nurse who see nothing but heart patients, and are very familiar with Ada’s specific heart anatomy and the Fontan procedure.  Her heart anatomy is so rare, that even when we talk to people who know people whose nephew/neighbor/cousin/friend have heart defects, they are not always similar enough to relate to what we have seen in Ada and what we will see.  There is of course a touch of that familiar human emotion of “you have no idea what we’ve been through” that I have to fight off, because if there is anything that I have learned in these last years, it is that I have no idea the amount of pain and heartbreak those around me might have been through or might be in the middle of.  

We will update on Monday as we have time and ability.  I do have specific prayer requests for those who are interested and available to pray:

-         - Pray for Ada’s psychological and emotional well-being, or that we would be able to communicate what we need to in an appropriate way, and that she can communicate what she is feeling and what she needs as well.  She is four.  But she is so aware and so observant, and I know she is taking this all in.  Specifically, pray for the next experience on Monday of her going under anesthesia, as she has had an experience now that was quite negatively stressful.

-         - Clearly, pray for the hands of Dr. Jaggers and the other assisting docs and nurses during the surgery, that they would have wisdom and success in the intricate details of the surgery.

-        -  Pray for Nick and I as we need to be strong for little Ada, but it is so hard to be in the position of powerlessness.

-       -   Pray for us to feel and/or know the presence of the Lord.  These last couple months have been pretty tough, and I am pretty "dry".  We need Him.

Surgery and the Move

Oh, this sad, sad, forgotten blog.  Days and weeks and months and years have flown by and I have not properly processed life internally or externally, or so it seems.  I have discovered as I have grown into more of a conscious and aware adult (sometimes I am) that there are days that I don’t know how I am until I write it out.  There’s an internal processor for you.  I journal MAYBE once every month- or two- and I would say that about 90% of those entries begin with alerting my reader (no one) that I am sitting in a coffee shop for some much needed time away with my journal, a nice pen, and a cup of warm coffee.  Seriously.  That is the first paragraph, explaining away how I have been so busy and how I dearly need to figure out how I am.  I then rattle off stream of consciousness for two to three to four pages, and generally abruptly cut it off in order to start the next page in my journal as either a to do list or a new budget plan or something else more pressing and practical.  ‘Tis the season of life, I suppose.  I think it has been a few months or years since I had much margin in my life.  Waa, waa, whine, whine.

I have wanted to write to the great and grand world out there and wax eloquently and think deep thoughts and inspire others to do the same.  Full disclosure: I haven’t had many deep thoughts of late.  I also haven’t slept more than four hour stretches for ¾ of a year, so I think those two things are related.  So this entry will disappoint if you were hoping for some inspiration.  This is merely a catch up on the life and times of our family, as there is a lot going on and a few of you who would like to hear!  And then maybe later I will share some deep thoughts, but I’m pretty shot at this point!

James- We added to our number ten months ago, and he is a little charmer.  Happy, inquisitive, content, and just entering a little stage of separation anxiety, so that should be fun.  Two bottom teeth and dark hair that sticks straight up on top, Mohawk-esque.  He is a spitten image of Ada when she was a baby, but all boy.  He can clap, crawl, click his tongue, and I promise you he says “Ada”.

Speaking of, Ada- she is nearing her fourth birthday and knows who in the family has to have birthdays first before her birthday comes.  She is bright and beautiful, sings and has an active imagination.  She has entered the age of the “why” questions.  Ada loves to help out with cleaning and kitchen projects and basically wants to be everywhere I am, doing whatever I am doing.  I need reminders that this is a precious stage, and that this too shall pass.  She is doing fairly well health-wise, but it is clear that her heart needs the next surgery.  She will tire out just walking up the stairs of our house or walking a block at a brisk pace.  Surgery is slated for June 22 at Children’s.  We will have the same surgeon, and feel comfortable with the staff at Children’s, as our first experience went so well.  This surgery is called the “Fontan”.  In general, this surgery is the final, and it connects the inferior vena cava to the pulmonary artery so that the end result will be a long loop…. Blood will leave her heart and go to the body and the lungs and back, rather than in our hearts, where there are two circuits- one to the body and back, one to the lungs and back.  Her blood oxygen levels should be much improved and I am hoping that she discovers that she feels much better overall!  It is hard to know with little ones, especially as she has never known what it feels like to have high/normal oxygen levels.  Length of stay in the hospital could be five days to five weeks, depending on how her lungs handle the increased blood flow to them.  So, a lot going on with our precious first born.  There is obviously a lot that I am feeling right now as the mom, as one can imagine.  We need wisdom in knowing how to prepare her for this surgery, as her experience will be one that she will remember, unlike her last surgery at 5 months of age.

And then the kicker- Nick got a transfer with work!  Bittersweet, to be sure.  He will be continuing with the same company, but working out of the Twin Cities in Minnesota.  Yes, folks, my homeland.  For years we have had it in mind to make a move to Minnesota and now that it is a near reality, my mind is spinning.  On the one hand, I am excited to reconnect with family and friends as well as places that I hold dear.  And on the other hand, now that it is happening we are feeling the pain and grief of leaving a place that has been home to Nick for his whole life and for me these past ten years.  Nick has already begun his work out there, flying out to MN for the weekdays and back to CO on weekends.  Largely due to the surgery that we have been planning on for so long, we have decided that we will not move as a family until after the surgery and hospitalization and hopefully a bit longer afterwards as well, as Ada has many adjustments to face.

We will have more to say and will use this blog again for giving information, particularly as the day of surgery approaches.  Please pray for us!  Oh, and bring by empty boxes, come July.  Our previous move was just long enough ago that we gave all our moving boxes away!

Peace…