Saturday, January 1, 2011

Noah's First Days

As a continuation of Noah's birth story, I thought I might tell a little of the wild ride that we all went on as a new family during Noah's first days following birth.

I left off my last post at the moment of Noah's birth. In the operating room, they let me Matt carry Noah over to me to see me and then they wisked him away because he was not breathing great. While they were finishing the surgery, they administered a couple of oxygen puffs to Noah to help with the breathing and took him to the NICU for observation. I was wheeled back to the birthing suite where my mom was waiting. At this point, I'm not sure what was going on with Noah or Matt. All I remember is starting to regain feeling in my legs from the removal of the epidural and then a intense, awful, nauseating pain in my head. I was in so much pain and they couldn't do anything for me at the time because they were unaware of what all medication or fluids had already been administered to me. While they determined this, I was writhing in pain in my mother's arms. At one point, my blood pressure dropped to 72/54 and they administered a dose of epinephren. My blood pressure recovered and I started feeling better. Pain meds were given and I fell asleep.

Matt went to visit Noah in the NICU and later told me that when he walked in the doors to the hallway, he heard a baby's cry and knew immediately it was Noah. He just followed the cry and sure enough it was his new baby boy. Noah was the biggest baby in the NICU and in fact was sharing a room with a 2 lb premie...he was so small. Below is a picture of Noah once he made it to the NICU with the feeding tube, IV, and monitors. It was quite a feat to pick him up without disconnecting wires.

Matt went home to get some sleep and came back a few hours later at around 9:30 that morning. I was able to visit Noah for the first time. Matt wheeled me up and from that point forward, I made a point to go up every three hours to feed Noah. Noah never received any breathing assistance in the NICU and passed all his tests with flying colors. He was finally released from the NICU 36 hours after his birth on Sunday evening. It was then, on Monday morning, I realized that I had missed all the pediatric visits since he was in the NICU during those and I was recovering down in my room. The urologists had completed an ultrasound of his kidneys and found the culprit, what is called a uterocele (a small bladder within his bladder that is attached to one of the ureters coming from his right kidney), and said minor surgery may be required after observation of a few months. Everything else checked out. On Monday night, during Noah's routine weight check, the nurse asked if we wanted to do the PKU test. We hesitated since Noah had already been through so many heel pricks, IVs, and stress. But we decided not to question it and go ahead with the test. We were released Tuesday afternoon and waited for 45 minutes after packing everything up before a nurse came by to wheel me to the door. We were very ready to get home. As we pulled out and around the corner, I received a call on my phone from a number I didn't recognize (I knew it was OU Medical Centers though because of the prefix). I assumed they were confirming my post-partum check-up at the physicians office. Instead, it was someone from the Pediatric Genetic department at OU Medical. She said the PKU test (which I had forgotten about) had indicated an abnormality in one area, and Noah needed to be evaluated for an organic acid disorder immediately. She asked how Noah was doing, and I said something about him being very sleepy (him not having really woken from the whole commotion of getting in a car seat and riding in a car). She asked if he was "lethargic"? I replied that you might consider it lethargic...I couldn't wake him very easily. She told us to turn around right then and head for the ER.

We arrived at the ER at around 4pm. They immediately rushed us into a room and were evaluating Noah, taking an enormous amount of blood, and seemingly ignoring Matt and my cries for an explanation of what was going on with our son. The doctor in charge simply turned to us and said, "We don't have time to talk right now. This is the first newborn that tested abnormal for this and did not come into the ER in a coma." Naturally, you can imagine what was going through our minds. The test was to be sent to a laboratory in Texas and the shipment for that day went out at 4:30pm. If we didn't make that shipment, we would have to wait until Monday for results from the test. Matt and I called our parents who came to meet us.

After the grueling 30 minutes to an hour of watching the chaos, the doctor sat down and explained that the test only gives indicators of certain genetic disorders and when a newborn tests out of range in any area, then the actual test is sent for evaluation. Noah tested abnormal for a metabolic blood disorder, either methylmalonic acidemia or propionic acidemia. Both of these meant that, if tested positive, Noah's body would not be able to process protein and would basically turn it to acid in his body. His whole life would be altered because of this. He would require daily B12 injections (which he started as a precaution until the test results came back) and would be on a strict formula diet requiring us to weigh precise amounts of medicated formula and a very strict diet containing little to no protein for the rest of his life.

They allowed us to take him home, but warned us to bring him in for observation if he was too lethargic and definitely if he wouldn't wake. Wednesday, we went in and started genetic counseling, covering first Matt's side of the family going over every person's relation and cause of death. We talked to a genetic counselor to learn how exactly this happens, learning that if Noah were to have this disorder, we would both have to be carriers and any other children we have would have a 50% chance of having it and our siblings would have a 25% chance of their children having it. We also learned that even if Noah didn't have the disorder, he could be a carrier. Thursday, I went back in for another B12 shot and to learn how to mix his specialized formula. We also went over my side of the family's medical history with the genetic counselor. While meeting with the nutritionist to learn how to mix the formula, the counselor came back in and told me that the doctor wanted to talk to me after I was finished. I just nodded (trying to keep the measurements for the formula in mind...running on pure adrenaline that was quickly running out). About a minute after this, the doctor came in and said that she didn't see any reason to wait to tell me that the results came back a day early and Noah did not have the disorder. I froze for a minute, threw down the bowl of formula powder I was mixing and just started crying with joy. I hugged my mom and immediately called Matt.

We were finally home from the hospital. We had returned two days earlier, but never really felt at home until then. Noah is a thriving boy now...loves his peanut butter sandwiches and hamburgers. We couldn't ask for more.

No comments:

Post a Comment