CHD Diagnosis: CoA, BAV, ASD
Camden's Blog: http://www.
Camden's Story:
Camden was born via C-section Monday, June 11th after no progression was made after being in labor for 24 hours. We heard afterward that the cord was wrapped around his neck and his heart rate would drop with every contraction so thankfully we went with the C-section as it would've ended up emergency anyways. He was perfect and an angel! We came home Thursday June 14th and enjoyed spending time as a family outside of the hospital and adjusting to having our little man home. Jeff's parents left Friday am (July 15) when we took Camden to his first dr appt for a weight/jaundice check. We then ran some errands and my family came over in the afternoon to get their snuggles/love in. :) Around 12 we noticed Cam was doing this little grunting with every breath (super cute and we even made fun of it a little). At 2:30 I noticed his breathing was quite rapid and I was starting to get a little nervous. A call was made to the pediatrician and we had an appt at 6:20 - just nervous new parents we thought. What we didn't know was that we were actually going to save our baby's life. We took him to the ped and he immediately said that something wasn't right and thought we needed to be admitted to Children's in Neenah (at this point they were suspecting an infection). He made a quick call to talk to the dr there and they agreed. His respiratory rate was in the 80-90 range and they should've been around 50-60. We arrived around 7 (my parents met us there) and that was the last time I held him. We got to the PICU and none of their equipment was working so they decided to transfer us down to the NICU. We got down there around 7:45 and were in for a HUGE whirlwind. They ran a ton of blood tests as he had a low body temp and that usually means infection and they started Camden on some heavy duty antibiotics because they were sure he had sepsis or something. He was super sick but we didn't really know that at the time. Then they tried to get his blood pressure and pulse on his legs with no luck so the Neonatalogist said to order an echo to take a closer look at his heart. That showed an abnormality of his Aorta. At this point he was almost in shock and his heart was barely pumping. They started him on a medication to open the aorta and get his heart back up to the normal beating/rhythm and determined to send him to Milwaukee Children's by helicopter. The flight team arrived at 3 am Saturday (July 16th) and they had to transfer him over to their gurney/isolette and were wheeling my baby away around 415. Scariest moment of my life. The dr said if we hadn't taken him in when we did, he would've passed away in just a few hours. My sister had showed up around 11 and stayed until Camden was wheeled away to the helicopter. Mom and dad said they'd go to Milwaukee with us so home we went to throw a bag together and head out. We were on the road by 530am and arrived at children's around 730. We were able to see Camden right away which was nice but still scary. He was hooked up to lots of tubes and monitors with lots of beeping going on. They did an echo of his heart which agreed with the one from Neenah and diagnosed him with Coarctation of the Aorta (CoA), Atrial Septal Defect (ASD) and Bicuspid Aortic Valve (BAV), basically narrowing of the aorta which was causing very little blood flow to the lower extremities. We knew surgery was in our future and that afternoon were told it would be the next AM (Father's Day). We were able to touch Cam, kiss him and talk to him whenever we wanted. He was stable and doing well at this point other than his heart. The next morning we awoke and were at the hospital by 7 for an 8am surgery time. The anesthesiologist came and talked to us and that's when I broke down. MY 6 day old baby who I should be home spending snuggle time with was going into heart surgery. I was devastated to say the least. They wheeled him away around 8:20 and the waiting began... 845 we rec'd an update that the PICC line was placed and they were ready to begin the operation. 1010 we recd another update that they were reviewing the repair area and were ready to complete it. 1045 the dr came out and said they were finished. We were so relieved that it went as well as it did and that the dr was very pleased with how it went and didn't take near as long as they thought. They were finishing stitching him up and then we'd be able to give him a quick kiss in the hallway before he went back to his room. He truly was a fighter. The day following surgery (June 18) he had the chest tube, head iv and catheter removed. Wednesday (June 20) he had the ventilator removed, his arterial line pulled and was strictly on oxygen. He then was able to start his feeds. He had a hard time with those and we weren't able to be moved up to the step down unit until 8 days after surgery. June 25 (Monday) he moved to the step down unit to just focus on his feeding. He was finally tube free and had the oxygen removed on Thursday (June 28). He was a champion and we got to go home (FINALLY) on Friday (June 29)!! We are so proud of our little fighter and miracle and we thank God daily for him!! <3
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