16 Day NICU Update

Clifford has had a really tough week, to say the least, and has been really sick. A lot has happened, but we will do our best to update you all.

On Monday morning (8/28) Cliff's oxygen needs shot up to 100%, and he was still struggling to breathe. This was a drastic change from a stable weekend before, concerning us and the doctors. We immediately ran tests, confirming that baby boy was battling numerous infections; pneumonia in his lungs and a rare fungal infection in his blood. So rare, that the infectious disease doctor had to talk with other hospitals to review similar case studies. The doctors felt confident they could clear the lung infection, as this is very common in the NICU, but not ideal for his immature lungs. However, the infection in his blood is much harder to treat and can take weeks to clear. There is also the risk of this infection traveling through the blood and forming 'fungal balls' in other organs like his heart and brain. You can imagine how terrifying all of this was to hear. They started Clifford on 5 different antibiotics, one of which is very aggressive, and stopped his feedings. On top of receiving this news, the doctors also let us know that with his high oxygen needs, there was a likelihood that he would stop responding to the support they were providing to him. We were absolutely terrified but did not lose faith that Clifford would fight through this. It was the hardest and longest 24 hours, hoping and praying he would turn a corner and start feeling better. Codey and I didn't leave his side.

Fast forward to Wednesday (8/30) and Clifford started to make improvements. His vitals remained stable, showing us the infection has not spread as this would be the first sign. His breathing started to lower from 100% to 65-80% oxygen support, and he started to appear more comfortable. Getting through those first couple of days was such a sign of relief. The antibiotics were starting to work, and honestly, doctors were amazed by the 180 he made. That night, we got Clifford baptized. A special moment we will remember forever. Afterward, he opened one of his eyes for the first time and stared at mom and dad for a good while. 

By Saturday his oxygen support started to creep back up to 85-100%. Again, lowering his oxygen needs became the priority. The doctors decided to try a new medication, nitric oxide, which helps with blood flow to the lungs. They were uncertain if this would help or not, as it's typically used to treat pulmonary hypertension, which Clifford has not shown signs of. However, thankfully, he responded almost immediately, lowering his oxygen support all the way down to 55%. He has since remained at this support, showing that the medication is just what he needs.

Unfortunately, this morning we learned the fungal infection in his blood is still testing positive and grew back more quickly on his last culture. They are currently discussing with the infectious disease doctor whether or not they need to switch his antibiotics to something stronger that will work better for Clifford. They are also discussing removing all of his pic lines since it's likely they are infected as well. After removing these, they would then surgically place a bigger central line in his chest, that is easier to 'clear' and less likely to be infected in the future. We're waiting to hear what the doctors decide to do, but hoping we can beat this infection soon. The good news is that his vitals and oxygen remain stable. He is also pooping and peeing great, so they decided to start his feedings again today. 

Clifford has proven he is one tough guy. We could not be more proud of him and how hard he continues to fight. We're praying we can beat these infections soon so we can get back on track, start making progress, and grow big and strong. 

We also want to say thank you to everyone for your prayers, cards, and sweet messages. If we haven't responded, please know we see them and appreciate you so much. I also want to say thank you to everyone for making me feel so loved on my 30th birthday. We truly have the best people in our corner. 

With love, 
Sadie