Brayden

Parents Name: Jenny and Kyle Goolsby
Child's Name: Brayden
Child's Date of Birth: 2/24/2009
Email: jennygoolsby328@yahoo.com
Location: Cookeville, TN

Diagnosis: PUV, Bilateral Grade V reflux, Peritoneal Dialysis since 2 weeks old, GERD, Transplant April, 2010

Story:

February 24, 2009 was a crazy, wonderful, amazing day. That was the day that our son, Brayden Jay, was born. Born at 33 weeks, he was 7 weeks ahead of schedule. He came into the world early because my amniotic fluid was completely gone and he was in distress. I was only allowed to see him and hold his little hand for a few short minutes before he was taken to the NICU. He was "the fat kid" in the NICU weighing 5lb 5oz.

Our story started at 19 weeks when on ultrasound we saw that there was a problem with Brayden's bladder and kidneys. We were sent to a "high-risk" OB doctor and they did more ultrasounds. They told us it was 1 of 2 things. He said that either Brayden had Prune Belly Syndrome or Posterior Urethral Valves. He said that we had about 2 weeks to decide if we wanted to terminate the pregnancy. He told us that either diagnosis was not good and both could be very bad. We told them that there was no way we would terminate the pregnancy and he said come back in 2 weeks to see how things are going.

We had very detailed ultrasounds every 2 weeks. This group of doctors came to my town from about 2 hours away. They are from a big medical center and just did "consults" in town. I wanted to deliver at my hospital because I trusted my normal OB, Dr. Gernt and didn't want to have to worry about getting 2 hours from home to the hospital. They told me all along that as long as things were going good, that it would be fine and we would just see what happened when he was born. At 28 weeks, my fluid began to drop slowly and I was having fluid checks every week. We were getting into the worrisome zone but nobody ever mentioned anything about it. The last time that I saw them was Monday of my 32nd week.

Tuesday of my 32nd week I went to see another specialist that comes to town once a week. Dr. Hill, was from East Tennessee Children's Hospital in Knoxville, TN. I went in and we talked about several things but the one thing that he told me was that even if my fluid held out to make it to full term, that Brayden would need a NICU and very close monitoring. That scared the crap out of me and made me wonder if the other OB docs knew what they were dealing with. Dr. Hill told us about another baby that had been born just 3 days before and had the same issues.

Wednesday of my 32nd week, I had another AFI (amniotic fluid index) and it was down to 7. Normal AFI is 10-25. This is measure of how many cm of fluid can be measured around the baby. They measure in 4 quadrants and add them together. I was supposed to come back to my regular OB on Friday and see if it had dropped anymore. On Thursday, I wasn't feeling so good and Brayden wasn't moving as much as normal, so I had another AFI done and it was down to 6. Dr. Gernt sent me for steroid shots to boost Brayden's lung maturity. She called her friend in Knoxville and they squeezed me in on Friday to see them in their office.

Friday, we saw Dr. Stevens. They did another round of very detailed ultrasounds. The ultrasound techs were whispering to each other and ignoring us. We finally asked them what they were whispering about and they tried not to tell us but I made it clear that I am a nurse and know a lot more than they think so they better start talking about what they see. I had had so many ultrasounds that I knew what I was looking at. When they finally did tell me what they were looking at, I told them that the measurements that they were getting were "normal" for him. I am a numbers person and can remember things very easily. I told them all of his numbers from a few weeks back and they then called in Dr. Stevens. He said that my AFI was now at 5 and I was to go home that weekend, stay off my feet, drink lots of water and come back Monday with a bag packed to stay.

Needless to say we were scared to death and happy at the same time. We were just planning on having a baby next week and coming home in just a few days. We never thought about the prematurity issue. I had friends that had babies at 33 weeks and they came home just a week or so later. No big deal, we were having out baby!!!

Monday, February 23rd 2009, we went back to Dr. Stephens and had yet another ultrasound. He put me in the hospital and told us that we would try to get me to 34 weeks so that Brayden would do better lung wise. We were sad but glad and told all of our family to stop putting their lives on hold for another week. Kyle and I played cards and watched TV and just hung out in the hospital room for the rest of the day and that night. Brayden was being monitored for 4 hours at a time and was looking pretty good. His heart rate was doing pretty much what it was supposed to.

Tuesday morning, February 24th 2009, I got up, took a shower and they came to get me for another ultrasound and fetal monitoring. We did the fetal monitoring first and Brayden wasn't doing so good on the monitor. On the monitor strip, the babies heart rate should go up at least 15 beats per minutes at least 2 times within 15 minutes. This wasn't happening at all. His variability was almost nothing. His heart rate was staying at 142. They "buzzed" him with a vibration stimulator (a vibrating thing they stuck to my belly) and that didn't work either. They tried not to alarm me, but I knew what was going on. They then sent me to the ultrasound room again and my AFI was down to 3. Let me tell you it took a lot of looking and me rolling over and trying to move him to find that 3 cm of fluid. We were at 1 when we found a pocket down by my left hip bone. Dr Stevens then came in and introduced us to Dr. Roussis. He would be our doctor today. Dr. Roussis came in and said, "okay, its 10 am now, we are going to have a baby at noon today". Whoa!, Did he just say we were going to have a baby today? Yes, I believe he did!!! I was scheduled for a C-Section at noon. Needless to say, we were frantically calling all of my family. My mom had to drop what she was doing and race up there to get to see me before we went back. Knoxville is 1.3 hours from our house and is an hour ahead, so my mom had about an hour to get there in time.

They took us over to the labor and delivery department and got me ready to have Brayden. The neonatologist came over and talked to us about what to expect and what would happen after he was born. I don't remember much of it because they had given me some pre-op medications and I was loopy. I wasn't supposed to be loopy but I was when Dr Prinze was there. This was the first time that anyone had said that he would be in the NICU until his due date which was 7 weeks away.

At 12:15 my Mom got there and of course, I fell apart. My mom was scared, I was scared and Kyle was scared. We didn't know what was going to happen in the next few days of our lives. At 12:20, they took me back, got my spinal in and Kyle got dressed. 12:50, Brayden Jay Goolsby came into this world screaming and peeing all over everybody. I think that was the best moment of my life. I heard my son scream, and heard the doc say he was peeing all over everybody! Brayden's bladder had been huge most of the time, it took an unbelievable amount of pressure to make his bladder empty. That's why my fluid level was down, all of the fluid was in his bladder!

They brought him to Kyle all wrapped up, sticky and all squished faced. He looked like a little old man. His eyes were wide open and I saw the 2 loves of my life then and there. THAT was the best thing I had ever seen. I got to see him for just a minute and they took him into the stabilization nursery to get him ready to go to the NICU.

I then started to feel some pain in my belly where they were working on my uterus. My spinal was wearing off faster than they had expected, so they gave me enough drugs to get me thru it. The next thing I knew, we were rolling back into the holding room. The NICU team rolled him over to me in the isolet so that I could see him one more time and actually get to touch him this time. It was amazing. Although my spinal had worn off and I was in major pain, I didn't feel any pain for those few moments. All I saw was my beautiful, 5lb 5oz, 17in long little baby. Eyes wide open, breathing on his own and wiggling all over. He was beautiful. I sent Kyle to the NICU with him and I rested.

Kyle stayed with him the whole time that they would let him. I went to my room and slept a while until Kyle came back. At 8pm, the NICU opened back up for visitors after shift change. I was still kinda numb and had a foley catheter in but I was bound and determined to go see my baby boy. The NICU was 2 blocks away in another hospital, we had to go under the street in a tunnel to get there. Kyle rolled me in a wheelchair and I went to see my baby boy.

Any parent knows the feeling of seeing their baby for the first time. I'm sure most parents of NICU babies are freaked out by all the tubes and wires and alarms going off. I, however, didn't see anything but my baby boy. Laying there in his tiny little bed. Breathing. That is when he got his nickname. The first thing that Kyle and I both said to him was "Hey Buddy" and it stuck. Yes, he had several tubes and drains and wires but I knew that was going to happen so I didn't let it bother me. I sat there for a few hours until Kyle convinced me that we needed to go back to the room to rest. It had been a long day. We would see him in the morning.

The next morning is when everything started to sink in. We saw Urology, Nephrology, Surgery and Neonatology doctors and were told what we were looking at. His labs that morning were higher than yesterday, his kidneys didn't seem to be working well. We would just have to wait and see how he was doing in the afternoon. That became the story for the next few days. On Friday of that week, after Buddy's first VCUG, Dr. Hill came and said that as long as everything went well over the weekend then on Monday we would do his first surgery to remove the PUV.

Monday came and surgery went well. When he left us he was a whole baby. Dr Hill wasn't sure if he was going to be big enough to get the scope down his penis or not. If he couldn't then the next option was a vesicostomy which is a opening into his bladder directly from the skin that the urine would drain out. We were not looking forward to that but we would take anything that we got. Luckily, he was able to resect the valve. He said it was a major blockage and it was a miracle that any urine got out at all. There was only about 5% that was not coved with valve. It was one of the weirdest he had ever seen.

The next few days we were watching labs very closely. His creatinine had climbed up to 2.6 by day 12 or so and his potassium had climbed to 7. Normal potassium levels are 3.5-5.5, after about 6 you get into the danger of his heart stopping. This, we took care of with medications and scheduled him for surgery for his PD cath.

On day 14 of his little life, he had surgery again to place his PD cath. This is a tube that goes into his belly and sits in between his guts. We would put fluid into his belly and the fluid would draw off the extra toxins that his kidneys could not get rid of. The other baby had his PD cath put in just a few days before. He had been on dialysis for about a week now. This was the first time in 10 years that the NICU had done dialysis, it was a learning experience for all of us.

Brayden spent a total of 40 days in the NICU at East TN Children's and then we transferred to University of Tennessee Medical Center. Dr. Malagon is the only 1 of 4 pediatric nephrologists in the state that did dialysis. We went to UT, got put on his dialysis machine that we would go home on and learned what we would be doing for the next few years. We were told that he would need a kidney transplant but wound not be big enough until he was a year old and 10kg(22lb). When we left the hospital, Brayden weighed 2.7kg. We had a long road ahead of us.

Now, a year later, Buddy weighs 9.7kg and we are scheduled for transplant on April 6th, 2010. This is exactly 1 year from the day we started dialysis at UT. We have been thru 3 rounds of peritonitis (infection in his belly), 3 PD caths, and a total of 9 surgeries. He is on dialysis 8-9 hours at night. He doesn't have much of an appetite so when he doesn't want to eat, we put it down his feeding tube. He is the happiest baby in the world and the best natured kid. He is very smart. I say to him all the time, "what God took away from your kidneys, he put into your brain". He is a little behind in motor skills but we see physical therapy every week and he will catch up after transplant to "normal" very quickly.

He is our miracle baby. No, he will never be "normal" by normal standards but he is our normal. He is the best thing that has ever happened to me and I wouldn't trade a minute for anything in the world