"It's okay to grieve the child you'd imagine raising. That little boy that you can maybe almost see."
At 20 years old, 22 weeks pregnant I was told, the sweet little bundle that was currently brewing in my body had a birth defect, a congenital diaphragmatic hernia. (This is a hole in the muscle between the chest and the abdomen, which allows the contents of the abdomen, stomach, intestine, liver, spleen, and kidneys to go up into the fetal chest.) 'Never heard of it,' was my initial thought but I really can't tell you what I was thinking at the moment. All I know is the specialist definitely down played it. Idk if he did that, to make the rest of my pregnancy somewhat enjoyable or if he just really didn't know what he was talking about. He gave me one scenario and only one. That was my first mistake - taking his word for it. I continued the rest of my pregnancy with weekly 4D ultrasounds and non stress tests. I really had no idea what the future held for us, but I would actually like the thank that Doctor, because I was able to enjoy the rest of my pregnancy and dreamed of all the things my boy would be, and all the things he would do. And for that peace, I am definitely grateful.
Austins birth was planned for all outcomes. The hospital was filled with the best NICU doctors for the worst case scenario, and was right next to CHLA, if he needed ECMO. (a heart lung bypass machine.) it wasn't until I had been in labor for several days that we were told just how bad the birth defect could really be. Of course we had read up on it, but we just assumed what our original doctor had told us, was the truth. Young and naive - clearly. We were told there a chance Austin may not even make it once he was cut from the umbilical cord... If he didn't have enough Alveoli in his lungs, he wouldn't be able to breath. Alveoli are tiny sacs in the lungs that perform gas exchange. That is the main process of respiration where the body gets rid of carbon dioxide and picks up oxygen which is used in metabolism. 2 days in labor, told I'm being rushed into an emergency c section at 7 am and then you throw this news on me, I was definitely not pleased with that bed side manor, but I did need the truth. I needed to start accepting the real, life threatening journey we had ahead of us.
I remember being wheeled into the operating room all alone. I remember having the worst anxiety and I just couldn't wait for them to let Jon come in. I remember the anesthesiologist asking me questions and trying to get me comfortable. I was in and out of consciousness and couldn't stop chattering my teeth. I was shaking like crazy and the bright lights were making my eyes water. I remember finally hearing a quick cry and then it went silent. As soon as they heard him cry they rushed to push a ventilator down his throat. It was all such a blur, but those are the details I remember. I was hoped up on anesthesia, and went to recovery for hours.
That night they were not going to let me go see my Austin - but I didn't like that answer, so they got me a wheelchair and let Jon wheel me down to the NICU. I remember pressing the buzzer, and letting them know we were there to see baby Ringelman. Then came the 2 minute hand scrub and my pretty yellow gown. There was literally a big light up countdown on the wall, starting the minute you turned on the water. No one expects this to happen to them, no one wants to see their baby hooked up to two ventilation machines, machines that are keeping your baby alive, along with several different monitors and Ivs. But this was my reality. His hair had been combed, and he looked so peaceful. I couldn't touch him much, just some finger grazing of his hands. I remember that the nurse he had that first week was amazing, and everything I could hope for. She took such great care of my sweet babe, once he was moved to another room we didn't see her again.... I was only in the hospital for another two days, so everyday after that for the next 4 months, I drove to LA. The feeling of leaving my baby, never got easier.
After about a week, I got a call on my way down there that Austin was going to be transferred to CHLA to be placed on NICU. I remember rushing down there, and seeing my baby in his little incubator being wheeled down the hallway, surrounded by paramedics. He and I rode in the ambulance across the street, and got him situated at Childrens hospital. He was in the room with the sickest babies, and to be honest most of the time he spent there he was considered the sickest baby. He was able to last another week without having no to be placed on ECMO until we got a call in the middle of the night. He remained on it for 13 days, they don't want you on it for more than 14.
Once he was stable we started conversations about his surgery. They needed to close the diaphragm, and put everything back in place. His lungs needed room to grow, so he could breathe on his own. His first surgery was on his 1 month birthday. I remember Dr. Ford very well. Everything went well. Shortly after he performed Austin's procedure, I saw him on a commercial, helping children in Haiti. I appreciate him, very much. The road ahead was still a tough one. I remember this one woman. The doctors rotated so he often had a different one. She wore knee high boots almost every time I saw her. She didn't think Austin was going to make it. She said it several times, without actually saying it. Austin had pulmonary hypertension, an
increase of blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature. Pulmonary hypertension happens because the blood vessels in the lungs are not formed properly. Which is life threatening and common in infants born with severe CDH.
Things weren't getting any better so they wanted to start him on an experimental medicine. It hadnt been used that often at this point, but it was being used as a LAST RESORT. <--- those words kill me every time. And of course it was that woman that made the phone call. I had felt like she had lost all hope in my Austin. If it wasn't for our amazing nurse, Sandra - I might have too. Anyway, the experimental medicine was a nitric oxide drip, that went through his ventilation tube. Inhaled nitric oxide (iNO) selectively targets pulmonary vessels, causing a potent and sustained vasodilatation and therefore increased pulmonary blood flow.
This seemed to work, and Austin was finally on the road to recovery. I was able to finally hold him for the first time at 3 months old. It was one of my proudest moments. I didn't even care about all the tubes and wires. He was in my arms. And we were both happy. We were moved to one of the less severe case rooms, and Austin was able to start eating the breast milk I had pumped, though his nose to his tummy, known as an NJ tube. Sandra and I discussed our plan for discharge and Austin was able to enjoy tummy time, because he loved it. He was meeting with physical and occupational therapists and it was all starting to become a reality our sweet boy survived and would be coming home with us. HEALTHY, with just some MINOR developmental delays from being in the NICU so long. I was going to have to teach him to eat by mouth, and spend a lot of extra time helping him develop naturally.
We headed back to Kaiser for his final surgery to finish closing everything up, placement of the, at the time temporary gtube, a mal rotation (they needed to rotate and move around his intestines) a nissen fundoplication, (a procedure to treat gastrosophageal reflux disease also known GERD. ) and to place a central line IV so they had no issues with IVs for the remainder of his stay. The surgery went great and Austin began to excel. He was able to remain on a nasal cannula for oxygen and was smiling, reaching for things and making eye contact.
My baby did it. He overcame his severe CDH and he was going to be okay. At least, until the first mistake happened 2 weeks after his discharge. But we arnt going to talk about that here because that's a different story. In those first 4 months of Austin life. I learned so much. Not only about the beeping machines that still haunt me; or the medical terms I never planned to learn - but about myself, and the kind of mother I could be, the kind I wanted to be. The strength I had, and the strength my son had. The people that would always be there, and the people that wouldn't.
This was just the beginning of our journey, and we had a long road ahead, but don't get it twisted our life is more blessed than you could ever imagine.
