Chapter 6 - The Fontan

CHAPTER 6 – The Fontan (...the final chapter in the book of my daughter's first 5 years)

Oh, Ada.  Sometimes it is hard to write out these words.  It is now about ten months ago that I woke up and got you ready for the hospital.  We had packed up bags the night before and had scrubbed your chest with a special soap that would kill off any germs.  James was still sick and feverish, so we kept giving him medicine so that he wouldn’t be hurting so much.  And you, my dear, were nothing but sweetness as we drove to the hospital.  At 6:30 in the morning we all arrived there, and we loaded James and his carseat and the bags into a red Radio Flyer wagon.  Meeting us outside the hospital were your two sets of grandparents, both aunties, and Pastor Rick Derbyshire from our church.  We chatted a bit and it was a crisp but sunny morning.  When we went inside we again filled out a bit of paperwork and then again we headed up the glass elevators.  This time, the hospital had been remodeled, so we went to a new waiting area, and Daddy and I brought you back into the pre/post room.  We got you into a hospital gown and you snuggled on the bed with George, the stuffed alligator that Daddy had brought you from Minnesota.  And we waited.  We hadn’t been able to meet with your surgeon, Dr. Jaggers, prior to that point, but when he came in to chat we knew that it was almost time for your surgery to start. 

He needed our signature on some paperwork.  It was paperwork that explained the condition of your heart, and what other possibilities there would be other than surgery.  Ada, there were no other options.  Dr. Jaggers explained that you didn’t have to have the surgery, but if you didn’t have it, you would continue to get sicker and sicker and weaker and weaker as time went on.  That was sobering.  What I mean is that it was a little hard to see the truth written out so clearly like that.  It made us sad.  There had been many, many moments in the previous four years that we had been sad FOR you.  We wished that we could choose a different plan for the first years of your life, but God is in charge, and He is the one who knew what we would go through and how that would shape us into the people that we needed to become.

A lot of things about my life growing up had gone very well.  I had not been a very sick person, and school was enjoyable and not very hard for me.  My family loved Jesus and took good care of me.  I was able to become a teacher and have jobs so I could take care of myself.  Any of these things could’ve been taken from me.  I am not saying that life has always been easy for me, but I am saying that I don’t think I have gone through anything harder than I did in the first years of your life.  Trying to keep you alive.  Realizing that I could do my very best but I still couldn’t fix all your owies.  And in the end, handing you over to the surgeon and trusting the Lord that He was in control and would never leave you, even if I had to.

Daddy and I did not go into the Operating Room this time.  They gave you a little bit of medicine before we said goodbye and kissed you.  It was medicine that made you sleepy so that the mask with more medicine would not be so scary to you.  You went back to the Operating Room carried by a nurse, and daddy and I picked up our bags and headed back out to the waiting room.  Waiting for us were our family and I went to my mom and cried with her a little bit.  We all prayed.  We waited.  

Every half hour or so, nurse Esther would come out to give us an update.  First, you were asleep and they had put in the central line – that was an IV that could get medicines into your body quickly.  Next, they were cutting through your scar tissue – that is the area on your chest where they had opened it up when you were just a baby.  They needed to go through the same spot, but needed to work very slowly and carefully.  After they had opened up your chest, they could put you on the heart-lung machine.  We were again very somber when we heard this.  A machine was working for your heart so that your heart could be still while the surgeon was working to fix it!  Isn’t that amazing that that is possible?? 

The surgery lasted from about 8:30 am – 1:30pm, around 5 hours.  Once you were comfortable and sleeping and they had opened up your chest, the surgeon disconnected your inferior vena cava (that brings blood back to the heart from the lower parts of your body) and attached it to the pulmonary artery using a little Gortex tube.  Dr. Jaggers decided as well to make a fenestration- a little hole that would relieve some of the pressure in your heart.  This will either be patched up some time at a later point, or there is a chance that it will close on its own.  Right now it is helping your heart to have it open.  Then they patched up any holes and stitched up your chest, all while you were comfortably asleep.

I wore the heart necklace that you had made for me the week before out of the beads that our neighbors had given you.  We sat waiting to hear news, and chatted a bit with one another.  The aunties returned from their trip to the pediatrician with baby James.  He had more medicine and was looking a bit better.  I was glad that I could see him, and he pulled himself along the ottomans in the waiting room, visiting one family member or another.  He was a ray of sunshine as we were anxious for you and hearing news of how you were doing.  Finally nurse Esther told us that it was over!  Surgery had been successful and Dr. Jaggers would be out to talk with us soon!  We were so relieved!  He came out and explained all that had happened and was encouraged by how everything had gone.  After he left, Daddy and I waited to be called back to see you once they had you settled into a room.

A lot of time went by.  It was maybe only a half hour or an hour, but it felt like much longer than that.  I started watching through the window into the Cardiac Intensive Care Unit, and saw a bunch of activity.  I was worried again, because I knew that you were right there but I couldn’t be there to know what was going on.  A nurse then came out and explained to us that you were having some troubles as they were getting you settled into the new room.  You were sleeping through all of this still, and had strong pain medication, but as they carefully transferred you to a new bed and a new room, your body didn’t seem to like it.  I think that perhaps your heart rate was too fast or too slow or that your blood pressure was not in a safe place.  Honestly, I don’t remember what was happening.  We were very concerned and wanted to see you right away.  But within only a couple minutes the nurse came back out for us, and this time she let Daddy and I come in to see you.

I had prepared myself to see you, since we had the experience from the previous surgery when I didn’t recognize you right away.  But this time you were my dear 4 year old, and I certainly could see it was you underneath all the tubes that were attached.  You were still on the ventilator, which was a machine with a tube that went down through your nose that helped you to breathe and get oxygen.  Your body had been put to sleep for a few hours so that the doctors could carefully make the cuts they needed and stitch you back up without you moving around at all.  But now that they were waking you up, your body was struggling to remember how to do everything.  Your blood was now flowing differently through your heart, and it would take a while for all the systems inside of you to work happily together.  We were there as the doctor and nurses removed you from the ventilator that was breathing for you, and for some time, we watched from your bedside as your face showed a lot of pain.  You scrunched up your eyes that were closed and cried out a silent cry, and we were sooo sad.  You again were asleep still, but clearly feeling pain and discomfort.

Another specialist came by with a mask and some medicine that he put near your nose and mouth.  It made you cough, but they wanted you to cough up some gunk because that would help you to breathe better.  Little by little you calmed down and started breathing better on your own, though you were on oxygen because your blood oxygen levels needed help.  Every so often a nurse would give you more medicine so that you would stay sleeping and so that your pain would go away.  We brought in family members one or two at a time so that they could see you, but only for a few minutes.  The CICU is a very busy and important place and your room was not very big, so we needed to be careful not to be too loud and not to be in the way of the doctors when they needed to help you.  Daddy and I stayed with you all afternoon and evening. 

At some point in the later afternoon, they let you wake up so that you could start moving a bit and healing faster.  You still had lots of medicine in your body, so I don’t know that you remember those moments, but I always will.  It was such a relief to see your eyes open and be able to talk to you, knowing that you could hear and see us and that you were alive and that you were on the other side of the surgery.  You didn’t talk much, and your throat was hurting from the breathing tube that had been down your throat for many hours.  We held your hands and stroked your hair from your face and talked to you.

That night Daddy stayed with you in the CICU and I slept for a few hours in a sleep room that the hospital had for parents to use so they could stay close to their babies.  And in the morning we switched and Daddy got to sleep for a little bit.  Neither of us wanted to be far from you.  But little by little you woke up more and the staff of the hospital was able to take off more tubes and give you less pain medicine.  I just wanted them to give you as much medicine as you could have because I didn’t want you to be hurting… for goodness sake, you had just had open heart surgery!  That is a very big deal!  But they didn’t want to give you more than you needed and sometimes drugs have side effects that can be not so fun to deal with.  But still, let me say it: as your Mommy, I wanted to scold the nurses sometimes, and just tell them to give you the medicine and not mess around.  Mommies and daddies don’t like seeing their babies hurting.

Later in that second day, you were transferred to a different room on the Cardiac floor… I think it was the fourth floor of the hospital.  It was another closed unit and every time we would come onto the floor, we had to be buzzed in through locked doors.  The nurse at the front desk would ask us if we were healthy and if so we were given an apple sticker and allowed to visit you.  This unit is one that you would probably remember.  Your room had windows on two sides that looked out onto an enclosed patio with tables.  And more interestingly, a bird started to build a nest on the ground on the other side of the window from your room.  We watched as it brought sticks and soon it had laid an egg and was sitting on it.  How fun to watch!  Your friends had been so sweet in giving you gifts for your time in the hospital, so as you gradually got better and were able to sit up a bit, you watched movies, played with Mr. Potato Head and read books, played with stickers and the Fairy dolls.  But in those early days you were feeling pretty crummy so you did a lot of sleeping and watching movies.

On the evening of the second day, only a little over 24 hours after you got out of surgery, the nurses told us that they wanted you to get out of bed and walk around because a number of studies said that the sooner a patient gets up and moving, the quicker they begin to heal.  So with Daddy and I on each side of you and a nurse behind and Mimi Kim along as well, we made a slow and small loop around the unit, carrying your oxygen and medicine drip bags and various other tubes.  You were so very brave and so amazingly strong.  We didn’t go very far because we knew that you were weak and tired, but you were such a great sport, and you wowed us with your courage to do a thing that was so hard and painful.

Dr. Jaggers checked up on you throughout the week and other doctors too.  They kept a close watch on your heart and your body.  You would get wheeled down for x-rays to check on the fluid around your heart and in your chest.  One of the side effects of the surgery was that there was a back-up of fluid that needed to get out of your chest.  You had three tubes coming out of your tummy – that is what the small x-marks above your belly button are from.  The tubes had little balloons at the bottom that would collect the fluid, and the nurses would drain them and measure the amount.  They wouldn’t remove the tubes until they were done draining, and we couldn’t go home until they were out.

Daddy and I both stayed with you each day, and then we took turns going home every night so that we could get clean clothes and a bit more sleep in a bed, and to spend some time with James.  The grandparents were taking turns caring for James, and they did a very good job of it.  I was still nursing him a little bit so I needed to be with him at some point each day.  Near the end of the week, I started to feel kind of achy from the lack of sleep and from sleeping in strange positions on the couch in your room.  I had spent the night with you, caring for you through the night as the nurses came in and out.  Because of all the stress you had been through, it came to a point where the nurses just gave the medicine to daddy or me, and we were the ones to give it to you, because you would cry and refuse it and we had to encourage you with all the ways we knew how to get you to take the medicine that would make you feel better.  Some of it didn’t taste very good.  It was Lasix, which is a yellow orange liquid that would help your body get rid of extra water.  It was a really important medicine, but you didn’t like it.  So Daddy and I were trusted with the medicine to get it in you, morning, noon, and night.  So I hadn’t slept very well, which is okay. 

Daddy came at about 9 that morning with some coffee and a roll for me.  As soon as he got to your room and I sat down, I started to get the shakes and felt myself getting warm.  I knew I had to leave – I was getting sick.  It wasn’t just that I was tired and sore from the bed.  I said goodbye very sadly, and felt so crummy on the way home.  In fact, I didn’t go home – I went straight to a clinic so a doctor could check me out.  I knew that I needed some medicine.  When the doctor took my temperature and heard where I had been, she told me that I couldn’t go back to the hospital until my fever had been gone for more than a day.  I started weeping in the doctor’s office.  I told them where you were, and why it was heartbreaking news that I couldn’t be with you.  They sent me home with some medicine and I went right to bed to rest and try to get better.  Daddy stayed with you that night and the next and I stayed home until I was feeling better.  For me, this was a very hard part of your time in the hospital.  I just wanted to be with you, but I knew that if I was dishonest with the nurses and said that I hadn’t had a fever, the consequence could be that I would get you sick or another child on the floor, and I had spent four years trying to keep you away from sick people.  My body had given up under the pressure and stress of the previous weeks and was telling me that it had had enough.  It needed a break.  So I rested.  I drank a lot of water and juice and I had soup and I thought and prayed for you.  When I was a bit better I played some with James, which was nice because I had been missing him as well.

When I was able to return, I was so happy to see you again and glad to also be able to give Daddy a break, as he had been with you the whole time I was away.  All in all, you were in the hospital for 12 days for your second heart surgery, the Fontan.  The last few days you were feeling much better and we were just waiting for your chest tubes to stop draining so that they could be pulled and the holes stitched up.  The doctors didn’t want to pull the tubes too soon, or the extra liquid around your heart and in your chest cavity could cause some troubles and make you feel sick and we would end up in the hospital again.  And at the same time, every hole that remained in your body was a chance for bacteria to grow and infections to start, which of course we didn’t want to happen.  So the doctors needed to be very wise. 

You were sent home on oxygen, so we had another oxygen concentrator sent to our home.  We all were old pros now on how to do life with an oxygen tank in tow!  The only medication that you still needed was a few doses of Lasix as there was just a little more fluid that could be eliminated from your body.  When we returned to Children’s Hospital just a few days later, your last stitches were pulled from your chest tubes and everything looked good.  We celebrated and took a picture outside of the building.  You remained on oxygen for a few weeks after surgery – a bit more than a month.  Near the end you were doing very well, and on our last visit with Dr. Nydam at Rocky Mountain Pediatric Cardiology, she said that we could try out life without the oxygen tanks, as we were about to get on a plane to move to Minnesota.  So by the time we moved to Minnesota on August 4^th, you were done with medicine and off of oxygen.  All that remains for you medicine-wise is your baby aspirin each day that helps your blood to be a little less thick and puts less stress on your heart.  You had been on lifting restrictions as well until about the time that we moved to Minnesota.  When we arrived at our new home, we were told by your new cardiologist at Children’s Heart Clinic in Minneapolis that you can resume a normal life.  No restrictions.  Hurray for you, my daughter!

Oh what you have come through, Ada.  I tried to sum it up for you here, and look at how long this book has become!  These first five years of your life have been out of the ordinary, to be sure.  It is the only life that you have known.  But as you grow and read this story, I hope that you can be proud of your bravery and strength in the early years of your life when your body was tired and your heart was over-worked and when you had to make many visits to the doctor and get extra shots and blood draws… to say nothing of the huge surgeries you have experienced.  You have an amazing story, Ada.  And this is only the beginning.

God knew.  He knew that you would be born with heart defects.  And He knew all that you would have to go through.  And He has a sweet, beautiful plan for you in all your days to come.  I believe that with my whole heart.  Daddy and I have done what we could to help you.  You have persevered with courage, bravery, and strength that I admire greatly.  But it is the Lord, the One who made the heavens and the earth and YOU who is to thank.  He is the giver of life, and we thank Him for your life and look forward to all the years ahead!

Sweet baby June, I love you.

Mommy

Chapter Five - A Time In-Between

After your first surgery, we returned home to our little apartment and watched you very carefully.  We had frequent visits to your pediatrician and to your cardiologist, as they wanted to make sure that your surgery had been effective, and that you were healing up in a good way.  We noticed almost right away that you had a MUCH easier time with eating and growing.  You could drink bottles more quickly, and didn’t tire out by the end of them, and that meant that you put on some good baby weight and you were able to start sleeping all the way through the night because you were not waking up hungry after a few hours!  (Before the surgery we would feed you even in the middle of the night, though it might mean waking you up, because honestly you drank a little more at night when you didn’t have as many distractions!  That meant that Daddy and I weren’t getting as much sleep because we felt that we needed to get up to feed you so that you would get extra calories and grow big and strong for the surgery.)

Every month for the first two winters of your life we brought you in to the clinic to get a Synagis shot.  It is a special medication that is only given to babies and toddlers who would get very sick if they got a certain sickness called RSV.  We knew that you needed to stay healthy as much as possible, so every four weeks you got a shot.  You didn’t like the shots, and because you were so smart you knew as soon as we were in the clinic what was going to happen and you would start getting fussy.  But at the same time, you were very brave.  We had to bring you and hold you during the shots, though it made us so sad to see you hurting.  We knew that this was another thing that was a little painful for you, but it would be much better for you to go through the shots than for you to get RSV and get very scary sick in the hospital. 

The shots were very expensive. After a nurse at your pediatrician’s office didn’t believe me, I had to go back and look at the information I got in the mail.  Each of the five shots that you got each winter were $15,000.  That is a very, very big number.  I don’t know why they were so expensive, and I think it is a little bit of a game between the people who make the important medicine and the people who sell it to the clinics and the insurance companies who help to pay for it.  But we are very very very thankful that we had insurance during that time, so we were paying very little for each shot, maybe only $50 or $100.  

In the spring of 2012, Daddy started to work at Starbucks part time as well as the painting business that he had done for many years.  He enjoyed that experience and the people he met and the yummy coffee he could drink, but what it meant was that he was a very busy guy.  He loves you so much and loves me so much that he did whatever he needed to do to make sure that we were cared for.  Insurance is a boring thing to talk about and write about, so I won’t explain it all now, but just know that Daddy has worked so very hard so that we could give you good medicine. 

Christmas of 2011, a month and a half after your surgery, we celebrated in Colorado.  You were still under lifting restrictions, and we didn’t think that we should travel with you in the carseat for a long journey to visit Minnesota.  That December, my friend Ninfa came over to our apartment with a couple gifts that had come to the school office.  It was the school where I had taught for many years, the school where Mimi Kim works.  Someone had dropped off some food and gifts for us and a cute little ornament – a round white ball with a picture of a bird painted on it.  The next day, we got another package with another little ornament with two birdies painted on it.  By the third day and the third ornament, I realized that something was happening.  We were getting gifts for the 12 days of Christmas!  Remember that song?  “On the first day of Christmas, my true love gave to me, a partridge in a pear tree!...”  What a special gift!  All in all, we received a lot of yummy food, gift cards, money, and sweet presents that Daddy and I and you would love.  Twelve days in a row, anonymous friends who loved us and were very generous dropped off gifts at our apartment.  Those past months of 2011 had been very hard and it was such a blessing to see and feel loved by so many people in our lives.

January 2012 we moved into a sweet two story house in Parker.  It was more space for our family, and it was a house that belonged to a friend of Daddy’s.  It was such a nice home.  You had your own room again upstairs and it is in that house that you first walked, said your first word, got your first tooth, and other exciting things.  In all, we lived in that house for a year and a half.  There was a big field in the back of the house and we would walk around and look at ants and bunnies and you would help me to water the plants on our patio. 

Once spring rolled around into summer, Daddy was working so very much.  Some days he would wake up at 4am, drive to Starbucks and work from 5-9, then head to the painting job until it started to get dark out.  Other times he worked in the evening at Starbucks after painting a long day.  On those days, I would try to either bring you to visit him at Starbucks to say hi, or bring by some lunch to him with you on the painting job, so that he would get to see you.  You would go to bed around 6pm every night, so that wouldn’t give Daddy a lot of time to see you and play with you. 

Other things that we did in those days were to go to the Parker library storytime, or play at a park, or spend time with friends from our small group.  You were very social and enjoyed being with people.  We had to be pretty careful though about germs.  We knew that because of your heart we still really needed to try to keep you healthy if we could.  That meant that anytime we wanted to go to someone’s house, but found out that they were a little sick with a cold, we had to stay away.  Also, until you were 2, we really didn’t put you in the church nursery and I didn’t work outside of the home so that we wouldn’t need to put you in daycare.  Daddy and I often took turns going to church services, while the other was with you, so that we could be in church, but so that you wouldn’t have to come in contact with germs in the nursery.  It was lonely for us sometimes.  Again, I wanted to act normal and pretend that I didn’t care about germs.  Sometimes people say that when you are surrounded by germs and when kids eat things off the floor, it makes them healthier in the long run because their bodies get stronger.  Well, even if that may be true, I didn’t relax in those years, and we sheltered you from what we thought could be dangerous to your body and your heart.  And I will say this: from the time of your first surgery to the time of your second surgery, you weren’t hospitalized even once.  And there was only one time a few months before your second surgery that you needed to have oxygen at home when you had a cold.  Doctors told us that it was pretty amazing.  Thanks be to God, I say.  We worked really, really hard to keep you healthy, and said no to a lot of fun things with people so that you would be healthy and safe, and it worked!!

I said that I didn’t work outside the home, and that is mostly true.  I taught some piano and voice lessons in our home, and Mimi Kim came to babysit you on those days.  Both of you had so much fun together!  I also began teaching a voice class once a week for Christian Youth Theatre, which was a nice way to still be a teacher.  I missed teaching and planning lessons and having students in my life, but as soon as we knew about your heart, even before you were born, we knew that I would stay with you to take care of you.  This is a hard decision for mommies and daddies that some day you may need to face if you have a family and little ones of your own!  I am so thankful that I have been able to be with you to watch you grow and teach you about the world each and every day!  We have had almost no days away from each other, and I find that I miss you bundles on those rare moments when I am separated from you.  At times, it has been hard for me to not be a teacher anymore.  But when I try to write out the things that I miss that I have traded in for time with you, they seem like not a big deal.  And some day I think that I will teach again.  Also added in to the fun of the Parker house was that it was there that I started to take care of RJ a couple days a week, and he became your little buddy.

When the house we were renting was needing to be sold, we moved again, this time to a cute little house in downtown Littleton, only one block away from a lot of fun shops like the candy store, the chocolate store, the ice cream shop, the spice shop… What a fun neighborhood!  We went on many, many walks when we lived there.  Daddy started working for GPRS that year, and his schedule got a little less crazy than it had been during his time at both Starbucks and painting.  You were two years old when we lived in that house, and you were learning to talk and sing.  Nonstop fun with you!  We knew that you would tire out more quickly than other children because it was like you only had half of a heart that was doing all the work, but let me tell you: you could fool a lot of people!  Endless energy from morning wake-up to bedtime.  You gave up napping pretty early, and so it was in this house that we taught you about resting time.  You do so well with your afternoon quiet time, and it is the only way that I can keep up with you, by taking a rest then too!

James was born almost a year after we moved into that house, but for a couple big reasons, we decided that we needed to move again.  The house was so, so cute, but it was very old and we discovered during the winter that it didn’t have a heater that kept the house warm enough.  When the winter was very cold, there was nothing we could do to warm up the house enough so that we would be comfortable, and we didn’t want our little babies to have to sleep in a cold room.  So when the man who owned the house decided to sell it, we decided not to try to stay.  What a wonderful decision!

When James was three weeks old, we moved into our last Colorado house – though we didn’t know it would be our last house then!  We had wonderful friends who came to help move us and clean out the old house.  You have a lot of great memories from our house on Rowland Place.  Our next door neighbor girls turned into some great friends for you, and you had such great times playing in the cul de sac!  We went on walks by the Platte River when the weather was nice.  Cooper and Braden gave us their double stroller, so you were able to ride at the same time as James.  In that year, we started to notice more how tired you would become just by walking up a hill or running for a half a block.  I don’t know if you could sense how tired you were or how hard it was to keep up with others, because you had never known differently.  You have always worked extra hard, without knowing any alternative.

In January of 2015 you came down with a cold, and Daddy and I watched you very carefully.  We saw that it was tougher for you to breathe because of your cough and congestion, so we brought you in to the pediatrician to get checked out.  The nurse who checked your oxygen levels that day found that you were in the upper 70s, which is too low.  They put you on a tank of oxygen with a mask right there in their office, and we brought it home with us.  Later that day we received a big machine at our house for concentrating oxygen and putting it into tanks that we could keep filling up.  You also got a big bunch of plastic tubing that was very long – it could reach all the way from the machine down to your bed, and almost all the way into the kitchen or onto the back deck.  Good thing our house wasn’t any bigger!  You didn’t let the oxygen slow you down.  Daddy would wear it on his back and walk beside you on your tricycle when you were playing with the girls in the cul de sac.  The teachers at church would carry it around so that you could still go to Sunday school and Bible study and MOPS.  We also went out and bought that finger checker so that we could know how your blood oxygen numbers were at any point, day or night.  We found that it was hard to keep you much higher than the mid 80s while you were on oxygen.  But we realized that we had not been able to check your numbers for many months, so perhaps your normal was much lower than we thought it had been.  In any case, you were on the oxygen for about 3 weeks.  We went in to see Dr. Nydam in March or April, and she told us that it looked like it was time for the next surgery.  Originally we thought that you would have this next surgery, the Fontan, when you were around 3 years old, but honestly – when you turned 3, you still had been operating so well and your oxygen numbers were high enough that Dr. Nydam let you keep growing and waiting on the surgery. 

We decided that we would wait until the end of cold and flu season for your surgery but in the process, your auntie got engaged and we needed to think about when we would have a chunk of time when we wouldn’t need to go anywhere.  Since her wedding would be in June in another state, we decided then that it would be a better plan to wait until after the wedding, as we weren’t sure how long you would need to be in the hospital.  You were a chipper girl with plenty of energy, though your energy came in little bursts.  I wished that I could know more of how you felt on a regular basis.  I would sometimes feel pretty sad when I saw you struggling to keep up or breathing hard after running around and playing a game.

So now we knew we only had a little bit of time to wait for your surgery.

And this is when life got REALLY crazy.  Daddy’s work offered him a job in the state of Minnesota.  They wanted someone there quickly, and so for a week or two, he and I prayed and talked about it.  It was not my favorite timing.  I loved our home and our small group and our friends and family in Colorado.  But I also missed my home in Minnesota and my family here.  In the end, we decided that it was a good opportunity for Daddy and our family, and so he said he would start working for GPRS in Minnesota.  So, beginning in May, Daddy would fly out to Minnesota every Sunday night and work there for a week, and then fly back to Colorado on Friday night to spend the weekend with us. 

He did this for about 6 weeks, and it was very hard.  It was hard to explain to you why Daddy needed to keep going away.  He worked very hard, and we stayed busy in Colorado with our normal schedule.  Weekends were special to all be together.

In the beginning of June, we went to Montana for auntie Rachael’s wedding.  It was a very special weekend and I am glad that you were able to be a part of it too!  At the last minute, we didn’t know how it was going to work out.  James became very sick and got a double ear infection, so I stayed back with him and with cousin Britta who had flown out to be our helper on the trip to Montana.  In the end, I flew on the day of the wedding and met you and Daddy who had flown the day before, and then I was able to be back late that night to be with sick baby James again.  Even sending you on that trip and on an airplane was scary for us.  We know that the air on planes can sometimes be stuffy and germy, and we really really didn’t want you to get sick just before your surgery.  But we took the risk and prayed hard for your protection.  You had also been on antibiotics for an ear infection, but thankfully you never got as sick as James or Britta or I did.

Daddy went back to Minnesota for one more week of work, then he was back for the week leading up to your surgery, which included both your second heart catheterization and your fourth birthday party!  These days were quite a blur.  Monday, June 13^th was your heart cath.  We knew what to expect from your first one when you were only 5 months old, so we weren’t as scared.  Daddy and I brought you into the cardiac pre/post unit and got you into a little hospital gown.  You got to choose a movie to start watching, and I think that it was one with Faun and Tinkerbell.  Nurses came in to check your vitals and answer any questions we might have.  Dr. Miller was going to do this heart catheterization as well, so we chatted with him again.  The nurses were amazed that we hadn’t been in the hospital with you since your last surgery.  I think it is pretty common that kids with special hearts get sick more often, and sometimes need to be in the hospital while they get better.  So as a result, when we checked you in, they had all of your information, but the most updated picture that they had for you in their computer was for a 5 month old baby! 

The nurse gave us the option to come back with you into the operating room while you got the medicine through your mask that would make you fall asleep.  So Daddy and I put on the special bunny suits and carried you back into the operating room.  The room was very bright and a little bit cold and there were a lot of doctors and nurses working on setting everything up.  Some of them we had met, and some we hadn’t, and most of them had their masks on, so I think you got pretty scared.  You had been happy and chipper all morning, and then all of a sudden you started crying and clinging to me and wouldn’t let me put you down.  Poor Ada, it was a scary moment for you, as I am sure the room looked scary, and you weren’t able to see all the faces of people.  We needed to put an oxygen mask on you that would give you medicine, but you started screaming and pushing away the hands of anyone who came close to you.  In the end, Daddy and I held you while the doctors and nurses put the mask on your face.  You fell asleep in less than a minute and you stopped struggling.  It was so very sad for us because we love you so much and didn’t want you to be scared.  But also, we couldn’t explain everything in a way that you would understand – that the nurses and doctors needed you to fall asleep so they could give you medicine that would make all the owies go away, and so they could again look in your heart to make sure that everything was looking good for surgery.

I started crying as the nurse led us out of the operating room, to wait for you outside.  He told us that you wouldn’t remember any of it, as the drugs would make you forget things.  But you did remember.  Many hours later, as we were driving home in the dark and you were close to falling asleep, you asked me about the man with the mask.  You had remembered, and we were sad that you had.  But Ada, dear girl, you are a fighter.  You fought against the strange people with all your might, and only after the fact were we able to explain it all to you.  Thankfully you didn’t seem to be too sad or upset about it.  You fell asleep and the next day you seemed to be just fine – mostly excited for your birthday party the next day!

Your fourth birthday party was so, so fun!  You had so many friends there, old and young.  We ate a lot of good food and played games outside.  There was even a piñata to break open at the end!  We all needed a good celebration of you and of your life and of the friends and family who had been there for us through thick and thin.

Your post op visit was on Friday of that week, and you sailed through it like a champ.  You brought along your little stuffed buddy, George the alligator, and the Child Life Therapist named Sarah also gave you a stuffed animal moose that you named Chocolate.  What a great name!  You practiced putting the mask on your stuffed animals and we were in and out of the hospital in a few hours.

All set to go.  A weekend together as a family.  I think we went up to Boulder that Saturday for the farmer’s market one last time.  It is such a fun place to go during the summer, and we knew that we might not get the chance again as a family!  Sunday morning I called your pediatrician about James, who had a high fever and seemed so sick, even though he was already being treated for an ear infection.  I cried when the doctor told me that he needed to see James the next morning in the clinic.  I told him where I was going to be the next morning, with you in surgery.  It was a very, very hard time again for me as a mommy and for Daddy as well.  James was so sick and sad and uncomfortable, and we really didn’t want you to get sick, but what were we to do?  We were all living together, and you had had a lot of contact with James.  We prayed for the dear little guy and arranged that his aunties would meet us at the hospital in the morning and take little James to the pediatrician while the rest of us stayed at the hospital during your surgery.

The Glenn

CHAPTER 4 – The Glenn Procedure

The week before your first surgery, we checked in early morning to Children’s Hospital Colorado for a heart catheterization.  It was a procedure where the doctors gave you medicine to fall asleep and then they sent a tiny camera through your vein in your leg all the way up to your heart.  It seems pretty unbelievable what doctors are able to do these days!  I never got to see the camera, but it must have been pretty small!  They took measurements and pressures in different parts of your heart to get ready for the surgery.

It was very snowy that morning, and we were a little late, but everyone was, so it was no problem!  We helped you into a cute baby hospital gown and took silly pictures together.  We didn’t want to let you go, but we had to – we knew that this procedure was important so that the doctors and surgeon had all the info they needed for surgery.  Dr. Miller from Rocky Mountain Pediatric Cardiology did the heart cath, and came out to talk to us after it was done.  Everything looked good, and he gave his permission for the surgery.  We were with you when you woke up, and I remember holding you on my lap in a big hospital chair.  We needed to make sure that you laid flat for four hours so that the spot where the catheter went in could heal up and stop bleeding.  You slept most of the time, which was good, because it is very hard to convince a five month old to lie still.

A day or two later we went back to the hospital for the pre-op visit.  They gave us a tour and gave you a snuggly blanket, then we needed to have a nurse take out a little bit of your blood to make sure you were healthy and to find out what type of blood you have.  We were dreading this, because no one wants their baby to get a finger poke or a blood draw, but the nurse at Children’s was a pro!  No problem at all!  On these visits we met nurse Esther who was the main cardiac (heart) surgery nurse.  She was such a kind lady, and we hope you can meet her again some day.

Monday morning, November 14, 2011.  Daddy and I get you up early in the morning, still in your jammies, and drive to Children’s Hospital, Colorado.  It is about 6:30 when we arrive, and meeting us in the lobby are both sets of grandparents and your two aunties.  We chat in a little circle after checking in and getting you a wristband.  Each family member takes turns holding you for a little bit.  Then we go up the glass elevators to the third floor together.  The family stays in the waiting room, and daddy and I carry you in to the Cardiac Pre/Post Unit and get set up in a room.  Many nurses and doctors come in with papers to sign and chat a bit with us as we wait.  I don’t remember everything, but I know that it was busy and that you were  sweet and smiley most of that time.  Then they all left for a few minutes, and Daddy and I prayed with you.  The nurse came to take you into the Operating Room where they would do your heart surgery, but we couldn’t come with.  The Operating Rooms of the hospital are sterile, very clean places, and so only the people who scrub up very well and wear special, clean uniforms can go inside.  You started crying as soon as the nurse took you away from us, but she assured us that you would only cry for a minute or so, because as soon as they brought you in they would give you medicine through a mask that would make you fall asleep.

Daddy and I started crying because we were sad and scared and we didn’t want to be separated from you and we didn’t want you to have to have open heart surgery.  We didn’t know if the surgeon would be able to fix your heart like he thought he could.  I am even crying a little bit now as I remember and write out these words, because it was one of the hardest moments of my life.  There was nothing I could do to help you, it was out of my hands.  One thing that we had to learn as you were a baby going through all of this is that sometimes in life we think that we are in control.  We think that we can protect our babies by putting them in the safest car seats and keeping them away from busy roads and unhealthy food.  And those things are good and important.  But at the same time, we can’t protect our babies from everything.  I was facing a problem that I couldn’t fix, even though I wanted to make things better all by myself in a simple and pain-free way.  Sometimes we can’t go around a problem and avoid a scary thing, we have to go right through it. 

But do you know how Daddy and I survived that very hard day and the tough days before and after it?  We knew deep down inside us that we didn’t have the strength to survive, but we had hope that the Lord would be with us all the way through, and that he cared for you just as much as we did.  And more!  I would have loved it if we had prayed and that God had miraculously healed your heart like He healed the blind man named Bartimaeus in the Bible.  But He didn’t.  And I knew that that didn’t mean that He wasn’t able to.  God can do anything!  But sometimes He doesn’t do what we want Him to do, and so in those times, we stop and remember who He is and what He has already done for us, and then we ask Him to help us through the thing we don’t want to go through.

Daddy and I soon left the room and went out into the waiting room where our family was waiting and we prayed there and waited and talked and ate snacks.   Every half hour or so, nurse Esther would come out and give us an update on what was happening in the OR.  Part of me wanted to be alone with Daddy, and part of me was glad for company.  Our family wanted to be close because they cared so much about you too.  And many, many people around Colorado and Minnesota and the U.S. were praying for you during the surgery.  The surgery lasted perhaps four hours or so, and this is what they did:

First, after you were comfortably asleep, they gave you pain medicine so that you would not feel anything.  Then they put in a variety of needles and tubes into you so that they could give you medicine quickly if you needed it.  They put you on a respirator that would give you oxygen through a tube down your throat so that your body would continue to get the air that it needed while you were asleep and in surgery.  The doctors then very carefully cleaned your chest again and made an incision on your chest that was about 3-4 inches long.  They cut open the sternum, the strong bone you feel in the center of your rib cage, and they could soon see your heart.  You were on the heart lung machine at this point.  It is an amazing machine that takes the blood from your body and cleans it and sends it back into your body again.  This was so that your heart could be stopped from beating and working so hard so that the surgeon could do the work on it.  When nurse Esther came out to the lobby to update us that you were on the machine, it was a very solemn, serious time.  We knew that these moments were very important.  As you were on the machine, Dr. Jaggers and his team took the superior vena cava, which brings blood back to the heart from the upper part of your body, cut it off, and attached it to the pulmonary artery.  Blood in your heart would now go past the heart from the body and directly to the lungs.  A big, long loop, instead of two shorter loops.  Then they closed up your chest, stitched you up, bandaged you up, and gave you more medicine.  You were sleeping the whole time.

When Dr. Jaggers came out to the waiting room, we knew that the surgery was done, and he said that it was successful.  We were so relieved and so thankful!  The hardest and worst was over!  I remember shaking his hand and saying thank you, feeling like saying thank you was not enough.  He is a man who has done these surgeries for many, many years, and he studied and prepared for many, many years before that.  We are so thankful for him, and others like him who were used by God to save our little girl’s life!  And I got to shake his hand, the same hand that had been carefully fixing your heart an hour earlier!

The doctors and nurses moved you into the Cardiac Intensive Care Unit soon after that, and within an hour they let Daddy and I come to see you for the first time.  They warned us that it would be hard because there were still a lot of tubes attached to you.  Can I tell you something that is hard?  When I first saw you lying there on the hospital bed, I didn’t know it was you.  It only took a moment and I could tell that it was my Ada June, but I had been distracted by everything attached to you.  You were puffy because they had given you a lot of water and liquid through an IV, and I believe that you still were on the respirator as well, so you had a big tube coming out of your mouth.  We stood by your bed and watched you sleep, listening to the whirring and beeping of all the machines in your room that were monitoring your blood pressure and temperature and respirations and blood oxygen levels.  Nurses and CICU doctors came through often and cared for you in a variety of ways.  Daddy and I took turns that night staying awake in your room, as we were concerned for you.  It was very hard to watch you wake up and cry because we couldn’t explain what was happening, and we didn’t know completely if the pain medicine was enough or if you were hurting.  Doctors told us that it was not uncommon for little ones who have just had the Glenn Procedure to have very bad headaches.  Maybe that was happening with you, but you weren’t able to talk yet to tell us.

You stayed for a day in the CICU, and then after they had taken you off the respirator and had taken off more tubes and wires and machines, the doctors moved you to another floor, the Cardiac Floor, which was much higher in the hospital – the 7^th or 8^th floor perhaps.  The room was a bit quieter and had more privacy, so we could sleep right there in the room with you at night.  Your nurses on that floor were all so very kind and they loved you!  You were only a baby, 5 months old, but you would smile and cackle laugh at all  your visitors, once you were feeling better.  In all, you were in the hospital for only 8 days.  Day by day you would smile more and need less medicine, and you became more stable in your heart rate and blood pressure.  Your blood oxygen levels were honestly worse than they had been prior to the surgery, which was a tough thing to see and understand.  Before your surgery, your oxygen levels were in the low 90s, and after the surgery, your numbers were middle to high 80s.  This was what Dr. Nydam expected to see though, and we were told that after your next surgery, your numbers would go up again.

You were released from the hospital a couple days before Thanksgiving, and you were off of oxygen!  Because of your surgery, you had a bandage on your chest, and we also needed to remember to scoop you up from your chair and car seat so that we didn’t lift you from under your arms… for six weeks!  But you didn’t need oxygen, and the doctors and nurses were very happy with how you were healing.  Daddy and I breathed a sigh of relief.  The time in the hospital had been hard and scary, but at the same time, we were so thankful that you had done so well and that the Lord had given us all the strength that we needed.  Grandma Lois stayed with us until the morning of Thanksgiving… she prepared the turkey at our little apartment, and didn’t even get to stay to eat it with us!  But we ate with the Pitrone side of the family and were grateful that we were on the other side of the Glenn.

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.