"The best and most beautiful things cannot be seen or touched-they must be felt with the heart." Hellen Keller

Tuesday, August 16, 2011

Every Heart Has a Story-Here is Bryson's!

This time two years ago I was pregnant...HUGE pregnant with my third child, who just so happened to be a BIG surprise (thank you antibiotics! no really, THANK YOU!). This time around was pretty tough. We were honestly still reeling from our "surprise" and wondering how we were going to do it all. I was working full time and taking care of the two other kids. I had gestational diabetes and then my amniotic fluid starting to go down drastically. I was teetering on the edge of having to be delivered and "waiting it out". I ended up spending nine days in antepartum and then I was finally told I would be delivered. I was so excited. He was going to be three weeks early but there was no reason to think he wouldn't be fine. I had to have a c-section (first one) and I was able to pick my music selection.

It is always nice to smell your own flesh being burnt while you hear "I want it all! I want it all! and I want it now!" Pretty funny!
It took an eternity for Bryson to "show up". I saw him for a split second and Mark saw him for a just a few more seconds. I remember he kind of "sqwaked" like a bird. He didn't sound like a baby when he cried, but a bird. They said he needed a little help since he was a little early and took him out of the room.
This is his very first breath!

This is one of the few pictures we have of him right after birth. We did not know he had a birth mark right under his nose until 4 months later because he was intubated and had tape covering it. When we first saw it we thought it was from the tape. We went back and looked at this picture and realized it was a birthmark!

I was wheeled to recovery and Mark went and shared the good news and came back to sit with me. An hour or so had gone by and we decided to call and check on the baby and see why he wasn't back. I remember like it was yesterday, the look on Mark's face. He went white, his face dropped, it was horrific. He got off the phone and said, "his heart is messed up, they are life-flighting him to Dallas!" THAT, is how we found out....over the phone and then no one, no one came until we went looking for them. A cardiologist came in and drew a picture and I swear to you. I don't remember a WORD he said. I can see the scene in my head and even smell the smells but I don't remember anything he said. Mark had the terrible burden to go and share the news with all of our family and friends. They wanted me to see my baby before he left and so they wheeled me in the NICU and I remember it was so crowded and noisy and there in the center was this beautiful, beautiful baby.....it was Bryson. He looked like a doll, sitting in a display case. He was covered in tubes and wires but I really don't think I saw them. I touched him and I remember that it seemed like no one knew I was there and that I wasn't supposed to be there. I had blood dripping down my leg onto the floor but I didn't care. I had to see him. These people came in dressed in these crazy flight suits. They had this huge contraption and all this equipment. There must have been 4 or so of them and I remember so clearly thinking, "I wonder who they are here for! I am glad it isn't my baby! That must be so scary!" And then I realized, they were there for my baby. I don't remember much of them getting him ready but it took a really long time, or so it seemed and then I was asked to go out in the hallway and wait for them to bring him out to see the kids and my family. They finally pushed him out of the NICU with a train of equipment and I remember Riley and Kory peering down into his incubator for maybe ten seconds and then they were gone. Mark ran down the hall with them as he was going and I was staying. My kids wouldn't see their baby brother again until October.
I managed to talk the doctor into letting me go the very next day. I cannot tell you how hard it was to leave that hospital without a baby, not even one to come back and visit. I wanted to go by my house on the way out and say goodbye to my kids but my mom wouldn't let me because she knew I would be too upset.
Mark let me know that they did the balloon stent procedure on Bryson and that he might lose his thumb because he wasn't getting blood flow to it. I asked him how we would survive this and he said to me, "It is time to pull out our Faith!"
I showed up at Children's to meet Mark and the team of doctors and nurses and to say it was overwhelming is an understatement.

I missed my other kids so much already....I had already been stuck in Antepartum for nine days before that. I remember crying so much those first few days that I made myself sick. I have never been so mentally and physically exhausted in my entire life. All I wanted to do was rush through Bryson's surgery, get him well and get home. Boy did I have a lot to learn! We finally found out Bryson had transposition of the great arteries, coarctation of the aorta and a VSD and ASD. Bryson came in to Children's Dallas in "profound shock". He was one of the sickest kids on the floor. Our local hospital was not set up to take care of a child that sick. No one could tell us when he would get surgery. All they ever said was, "he will tell us when he is ready!" It drove me insane! We spent our days and nights watching Bryson sleep (he was in a induced coma so he could heal) and stroking his hand and hair and talking to him. We didn't see his eyes for a full week I don't think. Finally, about a week after he was brought in they said he looked so good that they might do surgery that day. They were going to try to extubate him. Next thing you know, he is SUPER SICK and surgery isn't even in the foreseeable future. He was just too sick now! He never got better and at 14 days old they decided he HAD to have surgery, sick or not. Surgery was so stressful but he pulled through. They had told us that they would be leaving his chest open to make more room for his heart until it had healed, and also in case he had any problems they could fix him. The first time we saw him after surgery I asked that he be covered from the neck down. I didn't think I could handle it. He looked bad but it wasn't too bad. They said the next 24-48 hours would be crucial. Within hours he was bleeding like crazy and they couldn't keep blood in him. I remember so clearly seeing him and he had blood dripping off of his bed onto the floor and the nurse had on gloves and had blood all over her and it was speckled all over Bryson and his face. It was the most awful thing I had ever seen. It was touch and go all night with him. We prayed like we had never prayed before. The next morning they had to go back into his chest bedside and fix something that had torn. They cleaned him up and we went to see him. They had forgotten to cover him up and I saw his open chest. It was shocking and surreal....nothing can prepare you for that. He stayed like that for seven days before they could close him. At one point they took off the paralytic and let him wake up and he had his eyes open with the open chest. It was shocking to say the least.

Bryson gradually got better and we thought we were on our way home anytime! Talk about a roller coaster ride. After he got his chest closed one doctor said, "you will be on the 8th floor in a few days!" October was spent on a ventilator with major fluid problems and riding the withdrawal roller coaster. Then we found out near Halloween that he had chylous and would have to stay "at least" 6 more weeks to clear that up. November was spent with my baby having a pd cath drain and 4 chest tubes to drain the fluid out of his body. He had third spacing, chylous, respiratory failure, leaky capillary syndrome, he literally had a different sickness or infection every week. At one point he had 10 extra pounds of fluid on him and he leaked 1000 cc's worth of fluid out of his body overnight. He was literally like a water hose. Whatever they put in, he leaked out. He was so sick! We were all so spent, so tired, our Faith wavered. We were told he would not make it and there were meetings to discuss if we should let him go or continue to make him suffer. There were questions and decisions that I NEVER thought I would have to face, NEVER! Having a sick baby can bring a family so close but it SURE can tear it apart too.
We got a new doctor, Dr. Koch, and he said, "let me try one more thing, let's give it some more time!"
In December Bryson was extubated for the first time. Oh, the joy! I cannot tell you how great that felt. Then he got sick again and had to intubated. He got better again, and then he got RSV. He was "scheduled" to move to the 8th floor (the one before you go home) about a half dozen times. Did I mention that our home is SIX HOURS away from Children's! The stress was insurmountable. And finally on January 25th he got moved to the 8th floor! Our time on the 8th floor was short-lived as we headed home on February 5th. I remember calling Mark (who is six hours away) and saying, "come pick us up, they are letting us go home!" He was soooooo shocked!
We came home to a feeding tube that we kept for 6 more months, and Bryson was VERY addicted to pain meds. He came home on methadone and valium and about 10 other meds. Today he is on NOTHING! NOTHING! He is beautiful and perfect and healthy and funny. He will be two in about a month and he is truly my miracle. He changed me and my family and friends in ways we never imagined. I think of what he went through every, single day. No one would believe he went through all that if it weren't for the 12 scars. This is what he looks like now!

I know he would not be here today if it weren't for the many, many prayers of our friends and family! I thank them everyday, and I thank God everyday for my sweet miracle.
Before I go (I know it was long, I'm sorry!) I wanted to share some of my memorabilia from the hospital. Even though it was a terrible time. It was amazing and wonderful too. I met some of the most wonderful people I have ever met there. It has been and is still hard to not want to go back there. I know that sounds silly but it was our life for so long and the parents, doctors, nurses and staff there meant so much to us that it is hard to let go.

This is parts from his mobile at the hospital. That mobile meant so much to him. It was all he saw for many months. It was so soothing to him. We even went back a year later and bought mobile for baby's there who didn't have one. Also pictured is the tape recorder that we recorded mine and his brother Riley's voice on when we couldn't be there....so that he could always hear us.

These are the signs that were posted on Bryson's bed for all those months.

These are the name tags we all had to have to get in the CICU to see Bryson. They were and are so important because they represent so much to us.

This is the heart Bryson got after his surgery. Some of the staff signed it. Riley signed it like fifty times. It says some pretty cute stuff on it!

This is one of the keys to our room at Hawthorne where we stayed while Bryson was in the hospital. That place was very special as well and so was the staff there. The kids stayed there with us too. Lots of memories there.

Aunt Rita made this for Bryson. I think it was very "fitting"
In case I didn't mention we had soooooo much support in the way of not only prayers but food and clothes for Bryson and things for us and money from people. I have NEVER felt more loved or supported!

Bryson's sign the nurses made for his bed. I remember I didn't want them to make him a sign because then he meant he was "staying". He stayed all right!!!!

A picture out of the page of the book they gave us when we got there, explaining Bryson's defects. Mark had taken notes.

These are his bands from the hospital when he was born. I can't find the band from Children's but I remember it was kind of funny because it had a bar code and everytime they gave him meds or did something they ran the holder over it and it beeped like we were at the grocery store. I guess that explains our 7 million dollar bill!!!!! Oh and the seashell is the one they used to baptist Bryson the day of his surgery.

We all had our badges and on a particulary bad day a boy who had been at Children's before handed out bags of chips in the waiting room and taped to all the bags of chips were scriptures. I got this one and this scripture carried me through the worst of times. That sweet boy who had been there before me had no idea what he did for me!

This was a piece of paper with informaiton for burial that I carried around in my purse for months.....not knowing if I would ever need it. Someone special gave it to me so that I would not have to worry about finding information if that time came. I am happy to say I never needed that piece of paper but it signifies everything that Bryson went through, everything we went through. It was terrible and horrible and frightening but it has made us all better people. Since those dark days...the sun shines brighter, the air smells fresher, my kids laughter is louder.....I am forever changed!
Oh and on a side note, Bryson hasn't received them yet but he is due to be "awarded" over 700 beads of courage. That is one courageous kid if you ask me!!!! :)

I wrote this to share my story with others for a blog event called "Every Heart has a Story" Check out the event and read other inspiring stories at

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