CHD Journey part 2- surgery

So I left Riverton Hospital to go to Primary Children's Medical Center.......

Since we live 5 minutes from the Doctors office, I went home to pick up Bob. I also needed to make arrangements for our other 2 kids to be taken care of. A neighbor came and gave Jaxson a quick blessing.
 The ride to the hospital was long-driving to bad news is always takes forever.
   short- in the time we had before it really got BAD!

Arriving at Primary Children's 45 minutes later. We anxiously made our way to Cardiology, they immediately took us back for an echo. Jaxson started to cry and so I took a few minutes to nurse him. If I had know this was the last time I would nurse him for almost a week I would had made it last longer! When the tech started the ultrasound, we had no idea what we were looking for.
                                                        It was like a child's red and blue finger paint picture.
                                                     It was all so unreal to us.

 I thought they would look at his heart, tell me what was wrong and then give me an appt. to come back for a checkup.

I have never been more wrong in my life.

When the ultrasound was complete, we sat in the dark room for what seemed like eternity. Alone, just the three of us. The room was dim and the air was thick and warm, soon I started to get claustrophobic. Luckily someone opened the door, a different nurse appeared and asked us to follow her.

 This is when I knew something was terrible wrong. As we left the room we saw the tech, she wouldn't make eye contact with us. Then as we were led down the hall I noticed there was no one around. No nurses, no patients no one but us were in this part of the cardiology wing. We were led into the only open door then the nurse started to place the blood pressure cuff on Jaxson's leg. She couldn't get a reading so she left to get another blood pressure machine, it also couldn't get a reading on his leg. She left again and came back with what we assumed was a Dr. -I think he was an assistant.

He started to explain that Jaxson had a Aortic Coarctation and they couldn't feel his pulse in his legs. At this point I started to go numb I couldn't comprehend anything else he was saying. I could feel Bob's hand start to tighten around mine and wet tears started to stream down my face. Nothing made sense until I heard PICU (Pediatric Intensive Care Unit), Making him a bed, I.V. and then I snapped. "Is my baby going to die??" I said. What the Dr. said next was the wrong thing to say to a nearly hysterical mother. "Not today,.........." I'm sure he said other things that would have consoled me had I been able to remain calm and listen.

I have never cried so hard or showed so much anguish in front of a complete stranger. I couldn't control it. I was loosing it, my baby and surely my mind. I knew I would never survive losing Jaxson. I had been through so much already just to have him, I couldn't take anymore.

I vaguely remember the Nurse leaving as she wiped at her eyes and then the Dr.-intern.

Alone again we sat and held each other. Cried and kissed our little boy.

It couldn't end like this. I couldn't lose another baby after we had made it this far.

In my hysteria I made my husband promise that we would have another baby. No matter what I couldn't live without a baby.
This shows how in life sometimes our minds hold onto completely irrational ideas.

I could never replace Jaxson.
If he died nothing would ever replace him in my heart or in our Family.

But in that moment, my mind thought I could, with another baby.

To soon the nurse returned and said it was time to go. I tried my hardest to control my emotions. We were in one of the best hospitals in the country. There were miracles happening that very moment. We needed to be strong. We gathered our things and walked to the elevator. I held my breath the whole time. It was the only way I could stop myself from crying. When the elevator doors shut I made the mistake of taking a breath. Out came a gut-wrenching sound, somewhere between a cry and a punch in the stomach. My husband was a trooper he held me together, Literally.

 When we arrived at the PICU floor the nurse wiped her eyes again and led us through what I call the Gates of HELL.

*** Now I feel the need to explain. Feeling this way had nothing to do with Primary Children's or their staff. We received the BEST care possible, the Dr's and Nurses were amazing. Everyday thousands of children were alive because of the miracles that happened at Primary Children's.

 But every time I came through those doors It felt like my heart was on fire. That I was being consumed with fear, sadness, anger and I couldn't see the end of it.**

The workers in the PICU looked frantic and started to ask the Nurse questions. They took Jaxson from me and started inserting needles and monitors everywhere. It was chaos. My little boy had oxygen, several I.V.'s and they were pumping in 3 different medicines. One was called PGE. It was used to keep a hole between the chambers of the heart open (babies are born with this hole but it closes quickly after they are born) They needed to relieve the pressure that had built up in Jaxson's Heart. He was also given Versed- a drug the made him drowsy and slows down the brains ability to hold on to a memory. At least he wouldn't remember but, I would never forget.

Once he was settled everyone left except a Nurse assigned specifically to Jaxson.

Alone again, we stood by his little bed and watched him breath. After awhile he got fussy and his heart rate started to climb so the nurse let me hold him. He calmed right down after that.

Waiting Game

 Cell phones aren't allowed in the PICU and I needed to let our Families know what was happening, so I left for a few minutes to make some calls.

My Parents had left that morning to go on another Disneyworld trip.  I left them messages and then did a mass text to everyone else. I called my In-laws and they said they would pick up our kids and take them to their house. I also put a message on Facebook, it was the fastest way to let all our friends know what was going on.

We sat rocking Jaxson. Trying to comprehend that the day before we were Home, relaxing and loving our Little boy and now he was fighting for his life in a Hospital.

Looking back I knew something wasn't right. He was so quiet and slept so much.

 His poor cold little feet. He must have been in so much pain.

 I wasn't allowed to nurse Jaxson because at any moment they might need to rush him into surgery. Poor guy couldn't have anything to eat. He was introduced to the Binky in the PICU. They would put a little bit of sugar water on it when he would cry. Anything to keep him calm. When he would cry the machines would start beeping. It was such an awful sound. We got used to it after awhile and knew what numbers ( Heart rate, pulse, oxygen)to look for.

That afternoon Dr Tani came with 6 other Cardiologist. They explained what was wrong with Jaxson's heart. Jaxson's Aorta was very narrow, he wasn't getting enough blood to his lower body. Without surgery his vital organs would shut down and he wouldn't survive. He commended us for bringing him in when we did. He also showed us the x-ray of Jaxson's heart. It was unbelievable how big it was. His heart was smashing his lungs into his ribs. All the blood was backing up in the left side of his heart. We were told it was like a squirt gun instead of a running stream of water. We were told that after his surgery, Jaxson would probably be in the hospital 2-3 weeks to recover.

This is a normal size heart for an infant-the shadowy white area in the middle is the heart.

This was Jaxson's heart-outlined in red-it had filled with blood and was crushing his lungs

We were in shock. 2-3 weeks??? What about our other kids and Bob had to get back to work. We sat in silence until 7pm when they kick everyone but patients out for 1 hour while they change staff.

 I couldn't leave. I cried and stood by his little bed holding his hand. I just couldn't leave.

Soon everyone was gone and the Dr's were standing by his curtain and waiting for me to get out.

 Jaxson's nurse gave me a hug and said she would be with him the whole time and not to worry.

 Bob insisted that I go home and rest. He said I was still recovering myself and knew that I wouldn't rest if I didn't leave.  We also needed to tell our other kids what had happened. We argued and he won. We went home. It's the most awful feeling leaving your baby behind. I was so anxious to get out of the PICU but leaving Jaxson was unbearable.

As we pulled onto the freeway, Bob said "I can still hear him crying,Can you?" "Yes" I said. The rest of the ride was eerily quiet. We drove to Bob's parents to pick up Madison and Jesse. We sat them down and explained that Jaxson's heart wasn't working right and the Dr's were going to help him. We cried and prayed together pleading that Jaxson would be ok. Madison was 13 yrs old and devastated. She loved Jaxson so much and couldn't believe he wasn't coming home or that she couldn't see him. Because of the H1N1(swine-Flu) no one under 14 could visit. Jesse was 9, he was sad and confused. I don't know how much they understood. But several times they asked if Jaxson was going to die.

 

 

Trying to sleep that night was impossible. I laid awake waiting for the phone to ring. For someone to call and say it was too late, Jaxson was gone. I had one of Jaxson's socks in my hand and I just held onto that little piece of him through the night. Around 6 am I couldn't take it any longer, I had to get back to him. We got the kids up and ready for school. No one was moving very fast and I told Bob if we didn't get going soon I was going to go by myself.

The anxiety was killing me I had to get to my baby. I needed to see him and touch him. To know he was real and not a dream. To know he was still alive. I felt like as long as I was with him, he would keep fighting.

 When we arrived at the Hospital, Bob held my hand to keep me from running, no doubt. When we finally were checked in and allowed to see Jaxson, he looked so small and fragile. He still had not eaten and when he would make a sound his cries were raspy . The Nurse said it was from the oxygen.

 

 I still wonder if it was from him crying. He had to be in pain. He must have felt abandoned. I felt so guilty that I had left him alone. I still haven't forgiven myself for that.

 

 Our day consisted of Bob sitting in a chair next to me while I rocked Jaxson. Bob's mom-Char, came and we took turns going to the bathroom,eating and me going to the Pump room. Later that night my Father in law came too. No one from my family had come and My Parents had decided to stay in Florida. I felt so alone, sad and abandoned.

 

 

Soon again it was time to leave. I went between staying the night and going home. Our kids needed us and there was only a rocking chair by Jaxson to sleep in. Bob insisted I come home, he knew I would not rest while at the PICU. We were leaving when the Doctor Kaza told us that Jaxson was going to have surgery the next day to repair his coarctation. What!!?!?!.......... Dr. Kaza told us that the PGE had worked well enough that they could do the surgery. Before they were worried about the pressure being to high and Jaxson bleeding out.

I was scared out of my mind. I felt like this was the end. I had no faith or hope that Jaxson would make it through surgery. Looking back now I was just as broken as Jaxson's heart.

My spirit was crushed and so was my faith.

Our Bishop had come to the Hospital after we had left and gave Jaxson another blessing.

He said the Spirit was strong and that Jaxson would not be alone the next day.

 The ride home flew by and soon I was alone in my Bedroom. I got on my knees and prayed. Harder than I ever have before. I prayed ,cried and prayed some more. Then something happened.

Hope started to fill my heart I knew that if I had faith my son would be okay. I just had to believe that Jesus Christ could make him whole again.

 

I slept well that night. The next morning when Bob and I walked into the PICU I knew that no matter what it was the Lord's will. I decided that if Jaxson would suffer to much in this life I could let him go. I would see him again in Heaven where there is no pain and suffering.

We were allowed to have 2 other people with us that day so My Grandma Hauptfleisch and Char-Bob's mom came to sit and wait with us for the surgery to begin.

We Love Great Grandma Hauptfleisch

Dr Kaza was Jaxson's surgeon. He told us that he had been blessed with a gift to be a surgeon. What an amazing man, so humble. He explained that he would go through Jaxson's rib cage in back and cut out the narrow part of Jaxson's Aorta and then stitch it back together. He was worried there might not be enough to stitch back together and talked of a graph taken from Jaxsons hip. He said he wouldn't know until he "got in there"

The Nurse gave Jaxson more Versed to help him stay calm and forget what was happening. Then I carried him as we walked down the hall to the surgery doors. Bob and I kissed him and then handed him over to the anesthesiologist. He looked so sweet and peaceful.

 We went to the waiting room. I enjoyed being able to catch up with my grandma although I wish it would have been under better circumstances. At the 2 hour mark we got a call and the nurse said they were still working on Jaxson. Soon we were the only ones in the waiting room. More than 3 hours later, Dr Kaza came in and showed us the piece he cut out. It was amazing to see a part of Jaxsons heart in the hands of the Dr. that saved his life.  More of Jaxson's aorta needed to be cut out than expected so in the future we might have problems with it kinking if he hits a big growth spurt. But they didn't do the graph and we were so happy he wouldn't have more scars. 

Dr Kaza was amazing-we don't have a picture of him because he doesn't like his picture taken. He says it's "Bad JUJU" and then laughs

I got to hold Jaxson in recovery, by then it was after 7:00 and we were all exhausted.

back from recovery- All smiles!

They let us come back in the PICU a little early that night. We gave him kisses and then headed back home to share the good news!

Jaxson's Nurse for the night was so nice. She had bright red hair like Jaxson. She played music for him and had candy for the parents. I felt good leaving him in her care. She was singing to him when we left and although he was heavily sedated I knew it made him Happy! 

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This isn't the end, but a good stopping point!

Stay tuned for Part 3.

                                      ♥ Rhi