BriannaMashburn
04-21-2018, 03:47 AM
My name is Brianna mashburn I'm from Guntersville Alabama. I found out my second son had CDH after the 20 week anatomy scan. It was the first time we ever heard of it. I did a little research but not a whole lot. My ob/gyn gave me a stack of papers about CDH so that's all I really studied. I had to be referred to a high risk ob doctor in Huntsville Alabama. He done a 2 hour long ultrasound! Measuring every little bones and organs he could see. He said he couldn't deliver Carson because he delivers at brookewood hospital in Birmingham and they dont have ECMO. So we had to deliver at UAB women's and infant center also in Birmingham. I wasnt crazy about delivering there. I wanted to go to CHOP but my insurance wouldn't pay out of state. If I knew then what was going to happen I would of went to CHOP anyway and be in debt the rest of my life. But I didn't know exactly how serious this was going to be. I just knew he was going to be ok. I went to the hospital to deliver at 10 am they started my pitocin and we waited.. hours went by and I wasnt making much progress. They decided to slow down the pitocin and try to wait it out till the next morning. They wanted the day shift doctors there. So we try to get some rest before little man arrives. Around 3 am the nurse checks me and say "oh my you're a plus 2!" So basically he was nearly coming out. I had a real good epidural and I didn't even know. They raise my bed up to the ceiling it felt like and we waited what felt like hours for 14 doctors and nurses. I pushed 2 times and there he was. So beautiful. He was crying but not making a sound. They immediately worked on him trying to get him intubated. It took a very long time. I could only see a glimpse of him in between the doctors. I wanted him so bad. They wheeler his bed next to me and let me look at him for a second. They told me I could come see him in about an hour before they move him to children's across the skywalk. That hour couldn't come fast enough. My fiance wheeled me down the hall and there he was. Sleeping peacefully. I held his little foot and rubbed his perfectly made toes. I didn't stop tell they made us leave which came sooner than I wanted. he finally got settled over at children's and we could go see him. They had him on the occilator and his whole bed was vibrating pretty aggressively. He was sound asleep though so it wasn't bothering him at all. I stayed for as long as I could but I was still admitted and had to keep going back to give them my vitals and take my medication. Carsons doctor Dr Anderson. I had only met him 1 time and that was at the surgical team meeting. He seemed like he knew what to expect. He made me feel confident in his ability to save my child. He said he had gets 3 or 4 CDH babies a month. I felt pretty confident in those statistics. So Dr Anderson took Carson off the occilator and put him on a regular ventilator since carsons sats were so good. After he done that about an hour later his sats dropped. The monitor kept beeping. The bolus injection in his iv line only helped temporarily. So he decided to put him back on the occilator. Carson did so well the first 48 hours and after the vent change everything just started going down hill. His sats would drop. He had pulmonary hypertension also. So doctor Anderson mentioned ECMO and I broke down. I didn't want him to be on ECMO. I was scared of ECMO or more scared of the fact that he needed ECMO. And he did so I signed the paper and they hooked him up on ECMO at 4 days old. Carson was very sensitive to everything. He didn't like noises or being being rubbed. I couldn't rub his toe without his heart rate going up. So if I touched him I could only just lay my hand on his leg and not move at all. He was so sensitive. After I got discharged we settled in at Ronald McDonald with our other son. We would take turns going back and fourth. So Dr Anderson scheduled his repair surgery and I was very nervous of the risk with being on ECMO. The surgery took 4 very long hours. He told us everything went as expected. Which I took as good news. But he said hes very sick as anticipated. He had just about everything up there. He had less than 10% of a diaphragm. I just prayed he could rest and heal and he would be ok. Blood gas after blood gas every 4 hours they all came back the same. Not bad but not good. There were times it was good enough to go down on the sweep but within an hour we had to go back up. The xrays always looked good to me. It wasnt completely whited out. I could see some black in both. So I held onto that. But the ECMO started clotting from the amicar clotting medication they gave him during surgery because he was on heparin so they had to change circuits. I was afraid it would set him back but luckily it didn't. His xray still looked the same. Everything stayed the same for a week. Then things took a turn for the worst. He started seizing. Little twitches in his eyebrow and left hand that continuously did the exact same motion over and over. They came in hooked up so many wires all over his body to try and record over the following 24 hours. They did a sonogram of his head and there was a blood on his brain. Now Dr Anderson said it looked to be old blood? I never quite understood that. He made us feel like it was nothing to worry about. He put Carson back on amicar and of course that made the circuit clot. So they had to change it again. This time wasnt like the last. His xray came back whited out. I was so upset. That was the hope I had been holding onto. There was a little dark in the lower right lung. So I kept holding on praying they would open and fill with air. So after they aggravated Carson so much with all the wires and continuously touching him because he was so sensitive. They put him on new medication for the seizures. I can't remember what it was called. But that was that. I wished I would of got them to take him off ECMO right then but I don't know if that would of helped either. But everything stayed the same over the next couple of days. Dr Anderson thinks he should be making more progress than he was. He was a little over 3 weeks at this time. So Dr Anderson decided to do a broncoscopy to make sure there wasnt anything in his lungs preventing them from opening. The worst possible news we could have recieved came. There was nothing to suction. And his right lung was not fully developed also. Idk how that could be because I seen it filled with air on the x ray when he was 2 weeks old. I was heartbroken. I was mad. Carson also started seizing again they did another head sonogram and it was awful. He had a very very bad brain bleed. I broke down. The neurologist told us what she predicted his future would look like. And it wasnt what he deserved. Dr Anderson told us there was nothing more he could do for Carson. He needed time to rest and heal and develop and he didnt have any time. The ECMO was killing him faster than we could save him. That was why I was so scared of ECMO. It's a blessing sometimes but it can also hurt you. I knew the risk on brain bleeds on ECMO it terrified me to put my baby on it. And I knew he may never come off and I was right unfortunately. His pulmonary hypertension never got better either. But the thing that kills me is when Dr Anderson told us there wasnt anything else he could do and followed that with and I'm going to be out of town this weekend. It ripped us apart. We felt Carsons doctor give up on him and robbed that last bit of hope I still had from me. This could of been Carson's fait no matter what I done but I believe he deserved better than what he got. I will always have this regret burning in my heart forever. Carson is the strongest most beautiful little baby boy I've ever known and he deserved the world. I will live the rest of my time here on earth for him so I can be with him again forever. I find my hope in that.