We were young and in love, being blessed with a baby. My Pregnancy started out like any normal pregnancy. I was able to skip the whole nausea thing all together, but i was tired, hungry and growing! Boy was I growing.. We went for our 20 week anatomy check up and found out we were having a bouncing baby boy! We were ecstatic! I had wanted a boy and we already had his name picked out so i was able to start my shopping!! Less then two weeks later i received a call they saw a something off in the ultrasound, and that i had to come back in for an ultrasound with a specialist. I was automatically freaked out, having no clue what this could have possibly meant.. We had no clue what the future held for us, or what we were going to endure as a family. After the specialist did an ultrasound on my baby bump we were asked to meet him in his office.. not exactly what i wanted to hear. i wanted them to say everything looked good, my baby was healthy and i could go home! I sat there in his office numb cause honestly I'm not that good at showing emotion. I was told my son had a Congenital Diaphragmatic Hernia, [CDH - A condition in which the fetal diaphragm—the muscle dividing the chest and abdominal cavity—does not close completely.] and of course I have NEVER in my life heard of this.. So as he explained I listened as close as I could without my mind wandering off into a million places.. He reassured me it wasn't severe.. and its nothing I did or could have prevented. That it “just happens” to 1 out of every 2500 babies born, that we basically just had bad luck. He said Austin had to stabilize after birth, then surgery and two weeks recovery time, baby should be home in no time.
I am not sure if he did this so I could enjoy the rest of my pregnancy, or his bedside manner was just way to good, or if he honestly just had no idea what he was talking about. We went home and of course googled the condition [like they tell you not too] and just kinda skimmed through it. They said there was a 50% survival rate in babies born with this, and that if it wasn't too severe there wasn't too much to worry about. We were under the impression it wasn't too severe at that point, so we could breathe.
I continued out the remainder of my pregnancy, seeing the specialist weekly and having bi weekly non stress tests. Austin was growing and i was healthy. I had asked continually if i would need a c section and was reassured it would be perfectly fine to go ahead with labor. We did however decide to induce my labor at 40 weeks if he hadn't tried to make his debut yet. We were scheduled for an induction on June 8th, 2009.They decided to have me drive out to their hospital in Hollywood off sunset, because all of the top NICU Doctors were located there, and CHLA was directly across the street in case he needed to be placed on ECMO. [extracorporeal membrane oxygenation (ECMO) a technique of providing respiratory support; the blood is circulated through an artificial lung consisting of two compartments separated by a gas-permeable membrane, with the blood on one side and the ventilating gas on the other.]
June 8th approached and we headed down to LA with no idea of what the near future had in store for us. They were ready for us and we had a huge birthing room! They started the pitocin and so it began. My water broke on its own and after about 24 hours of labor i was given an epidural. I was not dilating at all - I was only about 3 cm dilated and had been in labor for what felt like forever. The NICU Dr. that would be taking care of Austin came in for a visit, which wasn't a very ‘uplifting’ experience. We were told Austin may not even make it. There is a chance his lungs didn't create enough alveoli to even take his first breathe. Due to the lack of space in his chest cavity and the ability for his lungs to grow. This completely blind sided us. I was traumatized, devastated you name it- Not once in my entire pregnancy had that been mentioned to us. And personally to this day, i don't think that was the right time to tell me. There I am almost 2 days into labor, on morphine and exhausted. By the end of day two my contractions were causing Austin’s heart rate to drop. The nurses decided to stop my contractions and i was told i would be scheduled for a C section for the following morning because this was too much stress on the baby. As i was wheeled into the OR the next morning, I couldn't stop shaking. The last thing i saw was Jon standing next to the big swinging doors in his blue scrubs waiting for the okay to enter. I have no clue how he was able to handle seeing me like that! He stayed strong - i was in and out of consciousness, my teeth were chatting like crazy and i was shaking non stop. They told me i would feel some pressure and that it was them pulling the baby out, i heard a cry. and then it stopped. They shoved a ventilator down his throat so he had help breathing right away and he was taken away. On Wednesday, June 10th at 9:27 am Austin was born at 6 lbs 9 0z and measured 19 inches long. I was put in recovery alone for two hours and was sent back to room baby less. That was one of the many hardships i had to face in the near future. I finally was able to see Austin in the NICU later that night. He was attached to a couple different breathing machines, and had cords coming out of everywhere. I wasn't allowed to touch him, my baby was right there - the boy i had been carrying inside me for 9 months, and i couldn't even touch him. I think thats when it finally sunk in, this was severe. Austin shortly had to be transferred to CHLA and be placed on ECMO for two weeks. On July 10th He was finally able to undergo surgery number 1. He remained at CHLA for the next 2 months being the sickest baby in the NICU. I saw things in that place i wouldn't wish on any young mother, but i NEEDED to be there everyday, I couldn't imagine being anywhere else. Finally when Austin was 3 months old i was able to hold him. The moment i had dreamt of. I didn't care about all the tubes and vents he was attached too, all i saw was him and I. Austin was in the NICU for 4 months before being sent home to us with Oxygen and a feeding tube.
We enjoyed every moment spent with our baby boy! I took him in for a two week check up with our surgeon and he decided he wanted to size Austin for a new feeding tube. He sized him, Austin cried a little and he sent us on our way. The whole ride home austin whined and cried and i knew something was wrong. I took him directly back to the hospital and after some X-rays and crazy stares - i was sent home 4 hrs later. Austin continued for the rest of the day to cry and whimper in pain. It was a sound no mother wants to hear. All i could for months was watch this boy and examine his mannerisms. I knew something was wrong. Later that night we ran back to the ER, and after being neglected again for several hours, Austins blood pressure began to sky rocket. Next thing i know the Pediatrician came running in with a whole gang of NICU nurses who automatically started poking and prodding him for a place to put IV's. I was being told the X-rays showed free air in his stomach, there was a hole and he was going into septic shock. A hole that wasn't there before the Dr had sized him for a new gtube. A hole that the other Drs earlier that day had missed because they didn't take me seriously. Because they took the wrong xrays. My son was dying because of all these incompetent people and i had no control. Here we were again, i couldn't protect him yet again. I think i still feel that guilt.. I couldn't save him from these people.. i had to trust the very same people who had just neglected him. The next morning after surgery Austin coded two times. for two minutes each. (We later found out that was because they ventilated him in correctly for almost his entire surgery, he was only getting air into once lung- his lungs were already weak and underdeveloped.) He spent another 40 something days in ICU and came home right before christmas, but not the same baby,
For the next couple years we were discharged from therapies, and constantly just told he was ‘just behind’ I of course knew better. I saw an autism specialist, was sent away and finally when he was two we scheduled an MRI (where they also messed up and gave him a medication that he didn't react well too and had to stay in the hospital over night) Once the results came in and we met with the neurologist he basically told me austin had fluid on his brain and he would be like this forever. I left there more confused than ever. i took those results to a different Dr. who finally gave us the answer we had been looking for. After all Austin had been through, after all he had survived he was now left with brain damage [Cerebral Palsy] due to medical negligence. Most of his brain was scared tissue - not fluid. From that point on i was finally able to take care of my son the way he needed to be taken care of. Because of Austin, I am who i am today. I don't remember who i was before i became his mother and had to go through all of this. We became stronger. Austin is who i am, for the last 5 years he has consumed my life with his happy spirit. He is such a happy boy, and he is healthy. Those things are the most important, and we will forever be better people for going through all go this and coming out together and stronger than ever. Our story is complicated and not perfect but we are a family, and recently got to welcome another bundle of joy into it. I cant wait to watch them grow, and see their relationship as brother and sister blossom. She will be a better person being raised with Austin, because i know he made me a better person.
xo
Brandi
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