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