This seems fitting for how I feel about blogging from the St. Charles NICU, again.
We thought we were in the clear. Carter had a tan that we knew was not a genetic blessing and it had a certain yellowish hue. However, he was checked twice during his first week of life and the numbers said he was fine and did not qualify for photo therapy.
Fast forward to Carter's tenth day of life. He was scheduled for his circumcision so it was already not going to be his greatest day ever. The nurse and his pediatrician agreed that he looked pretty yellow so we decided since he was getting messed with anyway we might as well go for another heel poke. He was an angel; he slept through the circumcision and did not make a peep until they poked his heel. The pediatrician said she has never sent an almost two week old baby back to the hospital to go under the lights so it was clearly just a preventative procedure.
Um, yea, not so much.
Four hours later I got a call from the doctor. She felt so bad because she had big news. Dr. Azimi and his nurses in the NICU had a bed prepared for Carter and we needed to go immediately. His bilirubin level was dangerously high and it was imperative to get him there ASAP to mitigate any further damage done.
As I drove Carter back to St. Charles, I did my best to keep my cool. Of course, I hit every light and got stuck behind every speed limit law abiding citizen on the road. Colin called as I was on my way (he was waiting for our personal life savers - aka: the Grandparents - to get to our house to stay with Jackson) and told me to leave my car right out front and he would take care of it. I pulled up and happily obliged and that is when the waterworks started.
Terrified of the neurological damage that can result from high amounts of bilirubin in a newborn's blood, I did my best to contain my tears as I realized I was living the nightmare again. Doing my best to answer questions and provide updated medical information, I struggled to not completely melt down. The idea of brain damage is enough to send any parent over the edge, so in hindsight I must cut myself some slack for not being more stoic in the moment.
Carter's bilirubin was 26 in the office during the afternoon. Another heel poke in the NICU showed 25.4, which confirmed that we were in the danger zone. Dr. Azimi had explained to us while we were waiting for the lab to confirm this number that we may have a tough decision to make. The reason we were in the NICU rather than the PICU is at a level of 25 or higher, a blood transfusion is protocol and only the NICU can do this on a newborn. There is a 5-10% chance of serious complications, so it would not be an easy decision for us to make.
Fortunately, at 25.4, we were just on the cusp of the danger zone and Carter was showing no signs of neurological damage. In fact, the NICU staff was very surprised at his vitals and responses considering the story the labs were telling. What we were looking at was an apparently healthy, yellow baby. When it came down to the decision to transfuse or not, Dr. Azimi told me he would not go into "if this were my kid I would...", which was nonsense. He was just recognized with a national NICU heros award and I wanted to know exactly what he would do if this were his kid. He said after conferring with a colleague, his recommendation would be to treat with photo therapy rather than risk a transfusion.
Done and done. Time to get in the tanning bed kiddo.
This may be a good time to mention the fact that Carter is following in Jackson's footsteps in one specific way. It is NICU protocol to monitor heart rate, breathing rate, and blood oxygen levels. Carter has been desating (blood oxygen dropping) during deep sleep and has been wearing a nasal cannula with the same slightest whiff of oxygen that Jackson had for weeks upon weeks. It is the tiniest amount of oxygen (we breathe 21%, he is getting 22%) but he can't keep his levels up while sleeping without it. Despite the fact this is too much information (many newborns are doing this at home without the parents knowing) and we are completely micromanaging him, it is not acceptable in the NICU world and should not be happening for no good reason.
Almost two days later, it feels like Carter has endured every test imaginable. Tons of blood has been drawn to rule out metabolic disorders, enzyme disorders and deficiencies, respiratory panels, (Jackson has been fighting a cold and in an effort to be a good big brother has likely shared some germs), and a total of three bilirubin checks so far. He has also had an echo cardiogram and lung x-rays for good measure. Everything has been coming back clear, normal, and healthy, which is awesome but makes you wonder what in the hell are we doing here again.
Dr. Azimi had a conversation with my mom yesterday and things may finally began making some sense. He had asked me every question you could think of, except if we had any family history of jaundice upon birth. In a caffeine-induced moment of clarity earlier that day it dawned on me that we have had jaundice upon birth on both sides of Carter's family. In addition to my week under the lights, my brother, mother, Colin, and Colin's nephew were all jaundiced when they were born. The doctor was most interested in my family and now suspects that this is a genetic thing - we are born with immature livers that need some extra time to process bilirubin.
Finally, a test came back early this morning showing something that is not normal. Carter is anemic today. His red blood cell count has gone down during his stay, which indicates that his red blood cells may be fragile and bursting more than normal. A blood sample was sent to Salt Lake City yesterday to screen him for a rare enzyme deficiency that may or may not be the root cause of all this drama. We will not get those results back for another four to five days and the implications of a positive result (other than an explanation/diagnosis) would be very minor and not really even treatable. In the case that this is his diagnosis, there is a chance that he would become slightly anemic when he gets sick in the future. For example, if Carter develops an upper respiratory infection we will have to keep an eye on him to make sure he is well-hydrated and perhaps give him some iron supplements to help him through the illness until his body fights it off. All things considered, easy peasy lemon squeezy.
So here I sit, two days later. Carter's bilirubin level has dropped 13 points (from 26 to 13) and we are so close to getting him out from under those lights. We will do another heel poke this evening to see if we are in the "no treatment necessary zone" again (12 or less) so we can start weaning him off the lights. Today he has gone from five lights to three, so we have already started the process. Next, we will have to make sure he does not rebound for a minimum of 12 hours after he is completely off the lights. Also, he had more blood drawn this morning as well as a sterile urine sample drawn from a catheter (poor guy!) to test for an unlikely case of a urinary tract infection, which can cause jaundice. Just another thing to rule out. Waiting for those results means we are here until at least Monday. Finally, why the hell won't this kid breathe when he is sleeping?! He has to stop desating or else we go home on oxygen.
I would love to tell you that once we realized a transfusion was not necessary and that no apparent damage has been done I became the pillar of strength that Carter needs. However, that is not really the case. There have been lots of tears and my mindset and emotions have been all over the board. Although we have so much to be grateful for and we know from our past and far more traumatic experience with Jackson that this will just be a blip on the radar, I have struggled this time around. How did I end up back on the NICU roller coaster again?
The bottom line is, I am not worried about Carter. He is apparently on a mission to prove that Jackson is not the only one who can tough out the NICU. I have watched this amazing little person endure so much these past few days and he is such a trooper. I am so proud and in awe of our handsome, full-term little guy. What I have worried most about is Jackson's well-being. I can't see him and leave him without crying and apologizing over and over for not being there for him these past weeks after having Carter. Now I have been ripped away again as I sit here all day waiting to nurse Carter and sleep in this hospital every night.
Come to find out, the person I should worry about the most is me. My lovely mother-in-law pointed out that I have two sons who have different needs right now, which can be hard on a mother. I pumped a bottle for Carter and went home this morning to spend time with Jackson. Colin left early for a work trip (which we decided as a family was the right decision) so Jackson is at home Gramma and Papaw. Although he was ecstatic to see me and sweeter to be around than ever, he was apparently not even bothered when I had to say goodbye again.
I don't know if it was the hot shower, fresh clothes, familiar smell of home, or the time I spent with my precious little boy, but now I know that this too shall pass and we will come out on the other side a stronger family, again. The postpartum element pretty much ensures I will still cry a little, but hopefully there will be more tears of joy and relief rather than sadness and frustration.
Like the story about the little engine that could that Jackson has made me read so many times, I think I can...I think I can...I think I can...I think I can.
Thanks for sharing, Steph. I wish there were some encouraging words to say but I know you got this. Stay strong sweet girl. Love you y'all
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