We had a big scare with Aiden yesterday. He hasn’t been feeling well over the past week, with symptoms of increased desats and a low red blood cell count. On Thursday morning the doctors wanted to give him one more day to see how he does before making any drastic changes. If he continued to desat, they were going to make the decision Friday morning to x-ray his lungs and give him a blood transfusion. (At 32 weeks Aiden’s bone marrow should be creating red blood cells; by giving him transfusions, we aren’t allowing his body to do the work to create it. So they like to avoid doing this if they can.)
Eric was supposed to fly to LA on Friday afternoon and stay there for a week. He and I went in to visit Aiden Friday morning around 9 AM before he had to leave to the airport. When we arrived the nurse was prepping him for the blood transfusion. We were surprised to see that because doctor rounds hadn’t started yet and they usually didn’t come to us until 11 AM. (In the NICU, you don’t want your baby to be the first baby they visit during rounds, because that means your baby requires the most urgent care.) As all the doctors came up to Aiden for rounds early in the morning, we realized he was first.
Aiden’s primary nurse, Amy, gave her typical update of Aiden and his symptoms. She also shared his blood gas numbers from a test they took at 7 AM that morning: his CO2 count was very high. The range they like to see is between 25 – 45 (and they are even okay with it being in the 50’s). Aiden’s count was 85. The senior doctor then looked at a newer doctor and asked him what he thought was going on. That doctor bluntly said infection, sepsis and potentially meningitis. I started crying. Eric and I held on to each other.
Another doctor, Lauren, came over and talked to us separately while they the other two doctors were discussing a potential diagnosis. She explained to us that Aiden likely has a blood infection. They wanted to run tests, a lot of tests. First, they would take a urinalysis to see if he has a UTI. Second, they would take a blood culture (they take his blood, put it in a petri dish and watch it for 48 hours to see what grows). Third, they would give him a spinal tap to see if the infection had spread to his spinal fluid. If it had, then it’s usually a good indication that it spread to his brain and would mean he had meningitis. (I cannot even process this, I refuse to. Call it denial, but I won’t go there.) Fourth, they would take an x-ray of his lungs to see if they have collapsed. They talked about putting him back on a ventilator. Because his CO2 count was so high, they were concerned he was too tired to breathe properly. I cried even harder at this, putting him back on a ventilator is such a step back and a painful, scary process.
Eric was obviously not going to LA. He cancelled his flight and we prepared ourselves for the worst.
They took his blood gases again at 9:30 AM. If his CO2 count had dropped, they would not intubate. The results came back quickly – he was at 58. They decided he would not need the ventilator. We were so relieved with this piece of good news.
Lauren decided to move him back to room 41 (our first room) to give him a blanket of antibiotics and to keep a better eye on him. We were going back to the acute care room! We were so proud to move to an intermediate room, and now were going backwards. As much as we understand his need for this care (and we want him to have it), it’s really hard to have this physical sign of his worsening condition.
They started with the urinalysis test, which requires a catheter (I FEEL YOUR PAIN, AIDEN). They also put a bag over him to catch more urine for a second test. I was present and holding his hand during these tests. Then, they prepared for the spinal tap. Lauren advised we not be in the room for this test, as they don’t sedate him and it can be painful. I went to pump and Eric went to the waiting room. When we came back they were done, they were able to gather the spinal fluid from the first poke. Now we were just waiting for the results. Waiting for all results.
The first test that came back was the spinal tap. They drop a piece of paper at the table next to Aiden’s incubator. Eric and I looked at it, but had no idea how to read it. Where was the doctor?? Finally, the senior doctor came over and looked at the results. He said it’s “highly unlikely” he had meningitis. His spinal tap was clear, the white blood cell count was at 5, not higher than 20, which would indicate infection. Thank god for this, we are so thankful for this.
The second test, the urinalysis, came back clear. The x-ray came back unremarkable. Aiden started gaining some color in his skin and his desats reduced dramatically. He started moving again, being more active. The blood transfusion and antibiotics were doing their job.
As of now, we are still waiting on the blood culture. This will help pinpoint what he has, and they can tailor his antibiotics for it. We are hoping it’s nothing too serious and can be treated. There is nothing to do but wait for that to happen. We called in the middle of the night and Aiden was back to being stable. We called this morning and Aiden is feisty again (there’s our little fire!). We are about to go visit him now.
What an emotional roller coaster. I never knew how much worry a parent can have for their child. I would hear this from my parents, that you never stop worrying and caring about your children. But I never knew what that meant until we had Aiden. You only want him to be healthy and happy. He’s had a rough start in his life and we’re so sorry for it. I would give anything to have given him a healthy, normal birth. But that just isn’t Aiden’s journey.
Okay, because I’m my mother’s daughter, and Leonard Buchholtz’s granddaughter, I have to end this positively and with laughter.
Here is a photo of my milk supply. The Canadians won’t take my milk because I’m a U.S. citizen and they won’t cover the blood test to make sure I’m healthy to donate. The amount of pumping (every 3 hours) is frightening. I’m going to have to throw half of this away!
Before Aiden went downhill, he was able to have his top up because he was regulating his body temperature. It only lasted a few hours though, as you can see from Eric’s expression.
Here are a couple more photos of darling Aiden.
And to date, this is our very favorite photo of him (also before the infection). I see he has my coloring and lips, but Eric’s eyes and face shape. Sweet little boy.