So I started out this weekend with fear. Thursday Greyson and I had a wonderful day. His oxygen level was lower than it has been in weeks and he looked great. He slept so peacefully and to be honest it was the first day I didn’t want to cry during my visit. Carlye was Greyson’s nurse and we spent a lot of time talking about his current condition. We thoroughly discussed his PDA and she printed out materials to help me understand what exactly happens if surgery is needed. Greyson does not need surgery at this time and his PDA has gotten smaller… yeah! Furthermore, Caryle definitely eased my PDA anxiety- I am very fortunate that Grey has wonderful nurses like Caryle caring for him. So again Thursday was a great day.
And then comes Friday. I walked into the NICU and immediately noticed that Grey’s cover has been removed from his isolette (incubator)- this sighting is rare. I was instantly greeted by the fellow on duty and she explained that Greyson was not doing so good this morning. She further explained that he had thrown up, had blood in his stool and his stomach looked swollen. I listened and then whispered the worst… “are these symptoms of NEC?” NEC is an intestinal infection that causes inflammation of the lining, and in rare cases, necrosis (tissue death). Though it affects less than 5% of all preemies, the disease is treated as an urgent matter because it is painful and can progress rapidly-- sometimes in just hours. The prognosis is incredibly frightening and despite 40 years of research and 4,000 cases annually, the cause, cure and prevention of NEC remain largely a mystery. The fellow put on her best face and said “this is something we are considering and we are going to continue measuring his belly girth, monitor his internal gases with x-rays and start the administration of antibiotics. Momentarily, I felt like I had turned into emotional spaghetti. My insides were spinning. I knew I couldn’t vocalize the news so I sent Matthew a text message and refrained from calling family. I sat with Greyson and prayed fervently. The first glimpse of hope came when Greyson’s doctor showed up with a smile and said “the x-ray of Greyson’s belly looks good- I’m not going to keep leaning towards NEC and start looking at other possibilities” I left Friday evening not knowing what was wrong with Greyson, yet relieved he hadn’t developed the deadly disease among preemies called NEC. Sadly, many preemies lose their battles with NEC.
Needless to say- I called the nursery several times throughout the night for check-ups and seemed to be getting positive news “Greyson is doing good and his most recent belly x-ray is reassuring.” However, the nurse practitioner called early this morning (Saturday) and let me know that Greyson’s blood work was not good and they are now thinking he has contracted Staph Epididimus. My immediate thoughts- who’s not washing their hands and how can he contract this is in such a sterile environment?! Apparently this form of staph loves plastic and Greyson is surrounded by plastic. The likely culprit is Grey’s PICC line. This is an intravenous line used to deliver much needed nutrients. This is also a very risky line because it is inserted into a vein near the heart. So our steps of action: remove the PICC line, administer more antibiotics and watch very closely. Eventually the PICC line will need to be reinserted at another site. So tonight we visited our sweet baby and hoped for better days. I’ll do my best not to research this new risk, I have to constantly remind myself that Greyson is not a statistic- he’s our loved baby and I’m not going to let anyone predict his future.
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We had a NEC scare as well. Happily swimming and growing along, and suddenly a blood streaked diaper post transfusion sends us into a spiral with a single phone call and a rush to visit and reassure that our sweet little one was ok. The unknown of all of this - if he'd need surgery, if he'd be transferred to the childrens hospital, if we'd wait too long and lose that battle. We also went the route of d/c feeds, antibiotics and xrays that all came back clean, leaving just a mystery why it all started. And man, he was a little mad wet chicken when the feeding didn't come down the tube the first time after they stopped to let his gut rest.
Kiley, just to be prepared, Grey will probably have to have a blood transfusion if he has not already. Our LO had several. I was in a panic over the first one but a good friend of mine, a NICU manager, told me that NICU transfusions are the cadillac of transfusions - leuko reduced, checked and triple checked.
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