It is Tuesday, I think………yes. We are so tired and sleep deprived that the days are starting to run together. Remy’s status has improved greatly since Friday. Remy is definitely a Zappulla. There is never a dull moment with our little lady.
We stayed at the hospital overnight on Friday into Saturday. Remy was very sick throughout the day and we couldn’t leave her. Remy had the whole NICU on a “red alert.” Her incubator was flooded with nurses, residents, and random doctors throughout the day. Mary and I were exhausted… physically, mentally and emotionally. At this point, Remy wasn’t showing signs of improvement and we have never been so afraid. Her blood pressure was very low and her entire body was incredibly swollen.
By Saturday evening she was starting to stabilize, but was still in critical condition. We went home for a bit after the nurses kept telling us to go get some rest and try not to worry. “Try not to worry?” Ha! Easier said than done. But I will say, that nothing makes us feel better than the nurses and doctors who take care of her. Throughout the night we called Lily, our night nurse, over and over and over. At about 1 am Lily gave us the best news. SHE PEED! Remy had not urinated in about 24 hours and they feared renal (kidney) failure if she didn’t. Urinating is crucial when your body is retaining fluids. Not only was our daughter on life support, but knowing that if she gets any more potassium it can be crucial, so we have to cut out any medicine that has any potassium in it is incredibly scary. Urinating was the only way that would improve.
Additionally, she pooped on her own, which she had not done in a while. Mary cried so hard when we hung up the phone that she scared her mother to death! Mom T was sleeping in the other room and was terrified until she learned it was great news! Mary is on an emotional overload, so naturally the crying comes when news is good or bad.
Here is a more clinical version of what Remy has been going through. She is now 33 days old but she is still unable to tolerate food. Her only source of nourishment is through TPN drips into an I.V. She receives potassium, electrolytes, calcium, and amino acids and has been administered Pepcid for acid reflux. She’s on Lasix which can reduce the swelling and fluid retention and treat high blood pressure, but mainly it is to treat her kidneys, which were in danger of failing. She is currently breathing through an intubator and the nitric oxide machine, on continuous doses of Phenobarb, and Keppra to control the seizures. She is on four antibiotics; Vancomycin, Zosyn, Cefotax. and Fluconazole, an antifungal antibiotic. She was taken off the Fluconazole today, the rest are on a 10-day cycle. She was put on Dopamine has been slowly weaned down and Epinephrine, which she was thankfully taken off the on Sunday.
By Sunday, Remy was slowly but surely improving. She was reacting well to all of the meds she was receiving. Currently, she is still unbelievably swollen! Doctor Wachtel called her a little blueberry muffin! Her blood pressure was stabilizing, and her blood gas levels were the best they have been throughout the weekend. Her heart rate lowered significantly, and the doctors had weaned her off some of the meds. She started peeing a ton, which is really important for her progress.
We were able to go home Sunday night a little more relieved and filled with hope. On Friday before leaving, Dr. Wachtel grabbed Remy’s little hand and said, “Promise me you will see me on Monday!” and thank God she did! There was no certainty. It was an emotional weekend, but to know she is getting better is the best feeling a parent can have.
Monday was more of the same trending. Remy was getting much better. She was taken off of the Dopamine. We were visited by multiple teams; Neurology, Infectious Diseases, Social Services, and Surgery. Nurses, fellows, attending’s, and residents alike were all genuinely happy to see Remy doing well. She is like a little Rock Star! While we are no more important than anyone else here and everyone has a tough experience in the NICU, it was evident how critical she was and our little fighter has managed to start her own fan club! We’ll be much happier though, when she decides to play it cool and stay out of the limelight as nice as it is to have the support! Other parent’s even check on her all the time. They say at the NICU, the more your baby is ignored, the better she is doing. We had a great day. Remy was able to get one eye partially open and move around a bit. At some point in the day our nurse, Claudia, said that we would know Remy is really doing better when she has more than one baby to take care of.
When we arrived at the hospital on Tuesday morning we saw Claudia, our nurse taking care of the baby next to Remy. Relief! The past few nights when she was really sick her night nurse, Lily, set up a mobile nurses station right next to Remy so she could watch her all night. Currently, she doesn’t need to be watched 24/7. They were even able to close the incubator cover (which has had to remain open since Friday for accessibility). Her intubator was originally running at 100% and is now at 45%. She is currently getting 360 puffs of air per minute, opposed to 420 from the weekend. Her nitric oxide was reduced. Everything is heading in the right direction!