Cayson Blake Part 2

2014-02-25 11.28.48

When Cayson was about three weeks old I started to feel like something just wasn’t right.  He wasn’t eating very good, he was vomiting a lot, and something just didn’t feel right to me.

One afternoon my husband put him in his swing and I went down the hall to take a nap.  While I was laying there I thought I heard something.  I listened closely but didn’t hear it again.  A little later I heard a noise and went to check on Cayson.  He had been crying, hard, and was pretty hysterical when I got to him.  But even though he was crying hard it wasn’t loud.  Our house isn’t that big.  For as upset as he was I should have easily been able to hear him crying.  This made me feel even stronger about something not being right.

The next day I called the doctor to get an appointment.  They had a slot open for that afternoon.

The first thing they did was weigh him.  Alarms went off for me because he hadn’t gained any weight since his one week appointment, he was still 7 lbs 4 oz, and was still not up to his birth weight.

The took him to the exam room and I told them everything that was going on.  They looked him over and the doctor said that she was pretty sure he had reflux and would give him medicine for that.  She also said that she wanted us to wait a few minutes to have another doctor who was older and had more experience to come look at him just to be sure.  So we waited.

The other doctor came in and listened to his heart for what seemed like a really long time.  I was starting to get a little nervous.  When he was done listening he looked at me and Crist and said he heard a murmur.  I started to get teary and he looked at me and said, “Don’t cry.  Murmurs are fairly common in babies.”  I got myself together and he explained that there are benign murmurs of childhood and that he is pretty sure that is what Cayson had.  He said that he thought one of the holes in Cayson’s heart hadn’t closed up and that they could give him medicine for that.  He told us that we needed to set up an appointment with a cardiologist to get an echocardiogram (an ultrasound of the heart) just to be sure.

I left the appointment feeling discouraged.  I was worried.

I called to make the appointment and they had one for the next day.  I took it and felt relieved that they could see him so soon.  A few hours later the office called me to tell me that they were canceling the appointment because they were calling for a huge snow storm in the morning and their office would be closed.  The next appointment they had was nearly a month away.  My heart sank.  I really did not want to wait a month to find out what was wrong with my baby’s heart even if they did think it was a harmless murmur.  My husband called our doctor’s office back and they called a different office and got us an appointment the next week.  A week was still kind of long but it was better than a month.

The day of the appointment came.  We put Cole on the bus and dropped Carson off with a babysitter.  Cole had a two-hour delay that morning and wouldn’t have to be picked up until 12:45 and since the appointment was at 8:00 we figured we would be done in plenty of time to pick him up.

We got to the appointment and they weighed him.  His weight still was not up.  They checked his blood pressure and his vital signs.

We went into another room to get the echo done.  One of Crist’s classmates works at the office and she came in while he was getting the echo done.  We were all laughing and talking.  I started feeling a little nervous because the echo was taking a long time.  The doctor came in and said that they needed to see our insurance card just to check something.  The echo finally was finished and the doctor told us to go sit in the other room and he would be in in a minute to talk to us.

We went back to the room and sat down.  The doctor came in, sat down, got out a pen and a piece of paper and started to talk.  He told us that our son had a serious heart condition called a coarctation of the aorta.  That the aorta was pinched and that his heart had to work extra hard to get blood to the lower part of his body.  He drew us a picture and explained everything to us.  In the back of my head I was thinking, “Ok so when are you going to give us the medicine.  This can be fixed with medicine right?  It has to be able to be fixed with medicine that is what the other doctor said.”

Then he looked at Crist and I and said, “Your going to have to be admitted to the hospital.  Your son needs heart surgery.”  I looked at him and said, “What?  You mean right now? Today?”  He said yes right now.  He told us that unless our house was on the way to the hospital that we shouldn’t go home to get clothes.  He told us that we should expect to be in the hospital at least two weeks.

My heart sank.  Hadn’t we already been through enough?  Cayson had survived birth and now everything was supposed to be perfect.

I cried and strangely enough laughed the whole way to the hospital.  This could not be happening.  We could not be driving to the hospital to admit our newborn son to the PICU to have heart surgery.  We had already been through enough and this was not real.  It couldn’t be.

But it was.

We got to the hospital and they took us to our room.  The surgeon came in and told us that they were going to monitor him and wait until tomorrow to do the surgery.  He talked to us about the surgery and what he was going to do.  He told us there was a 2% mortality rate.  That did not comfort me at all.  To me that number was too high.  We were told that there was a 1 in 800 chance of what happened with Cohen would happen and now they were telling me that there is a 2 in 100 chance of Cayson dying too.  At that point I fully expected Cayson to die during the operation.

The operating team came and got him the next afternoon.  They said that the operation would take between 4 and 5 hours.  They tried to explain to us what he would look like when he came up from the operating room.  That he would probably have a breathing tube in and be very swollen.  They explained that once the surgery was over we would be able to see him for a few seconds in the hall and then they would take him back to his room.  Once he was in his room we would have to wait for about a half hour before we could come back to see him.  They also told us that he would be getting a line either in his neck or leg and until that was taken out we wouldn’t be able to pick him up or hold him.

We walked with the team down to the operating room and then we had to say goodbye.  I really felt like I was saying goodbye for ever.

Cayson right before his surgery

Cayson right before his surgery

My mom and a bunch of our friends came to sit with us while we waited for the surgery to be over.  I don’t know what I would have done without them there.  They kept my mind off of what was going on two floors down in the operating room.  In my head I was still expecting the surgeon to come up and say that he was sorry and they had done everything to try to save him but they couldn’t.

After a very long 4 and a half hours they finally came and told us that the surgery was over and that they were able to remove the breathing tube.  The social worker took us down the hall so we could peek at him before they took him back to the PICU.  He was so swollen but alive.  At that time I thought he looked so good but looking at pictures now I’m not sure what I was thinking!

Right after surgery

Right after surgery

The surgeon talked to us and told us that everything had gone well but they had to do a little more work then they originally thought they would.

Drawing of what was wrong with Cayson's heart

Drawing of what was wrong with Cayson’s heart

How Caysons aorta looks now

How Caysons aorta looks now

After about a half hour they came out and told us we could go back to his room.  He was hooked up to tons of stuff but he was living and breathing and that was all that mattered to me.  I felt like a ton of bricks had been lifted off my shoulders, that I could breath again.

2014-02-20 11.03.53

He turned a month old a day after surgery

He turned a month old a day after surgery

The next few days flew by.  I was so nervous about bringing him home.  I was so afraid something would go wrong and I wouldn’t know what to do.  That I would mess up his medications.

2014-02-21 17.02.50

The nurses were amazing.  They taught me how to do everything.  They made sure I was comfortable with Cayson’s care.

After a few days his arterial line came out and we were finally able to hold him again.

Holding Cayson for the first time after surgery

Holding Cayson for the first time after surgery

He had lost more weight and was down to about 6 lbs 12 oz.  He was having trouble eating which is not uncommon with cardio babies.  They put a tube in his nose and fed him that way to make sure he was getting enough.  Then they took the tube out and tried to have him nurse.  He did ok and they felt he was ready to go home.

Little man with his NG tube. If you look close you can see where he pulled out his IV

Little man with his NG tube. If you look close you can see where he pulled out his IV

After being in the hospital for a week they told us we could go home.  We were so excited!  I wasn’t feeling nervous anymore, just excited to be together with the rest of my family.

Going home the first time

Going home the first time

We got home and I fed Cayson.  He threw up.  Not just a little spit up but a lot.  A few hours later I fed him again.  He threw up again.  I called the doctor.  She told me we had to go back to the hospital.

I cried and cried.  The boys were upset.  Crist was upset.  We just wanted to be a family!

Back at the hospital

Back at the hospital

So we went back.  This time they had me weigh him before and after every feed to make sure he was gaining weight and to make sure he was taking enough in.  It was kind of a pain to do but we did it for two days.  Finally on the third day the doctor felt confident that Cayson was eating enough to gain weight and that we could go home.

Sign the boys made for us

Sign the boys made for us

Going home again

Going home again

This time we were able to come home and stay home!  It has been a month since Cayson’s surgery and he is doing good.  He is gaining weight although he still has days where I don’t think he is eating enough.  He has to take 4 medications (which is one less than he took when he first came home) one of which he really does not like.  It gets a little crazy when we go out because we have to remember to pack all of his meds.  We still have lots of doctors appointments, with the cardiologist, his regular doctor, and weight checks.

One month after surgery

One month after surgery

I am so thankful for the amazing people who are in my life that have helped me get through this time.  People have been awesome with gift cards, cards, gifts, phone calls, text messages, meals, and coming over to help me with the boys and around the house.  I don’t think I will ever be able to thank them enough.

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One comment on “Cayson Blake Part 2

  1. Amy says:

    Wow. Wow. Wow. I can only imagine how it all must have been for you. So glad you are all home. Cayson is beautiful!

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