Overnight and early into this am, Riley seemed stable (ish). She was temporarily off of the phototherapy, and was even striking poses (evident in the picture above), her personality already emerging:)
However, the stability was short-lived. During the last lab check, her bilirubin count shot up to 18. I have no idea what this means, but what I do know is that the doctors asked for the lab to be repeated because they didn’t think that could possibly be correct. So I wasn’t concerned yet…maybe the lab messed up or it was a bad sample. In the mean time and as a precautionary measure, they were going to get as many lights on her as possible. My poor child was glowing, but I could deal with that. I was just happy that she was alive and doing as well as she was all things considered. However, I guess I should have been more concerned.
The repeat lab was 17.6. Now the doctors were concerned. The first one wasn’t a fluke. I had gone back to sleep for an hour or two around 8am that morning, as I had been up most the night, and Ian was taking a quick shower in our NICU bathroom next door to our room. There’s a knock on my door, but I’m in such a daze, that I don’t respond. I believe several attempts were made to get me to the door, but then the doctor gave up and used her key to enter my room. Now I was awake.
Here we go again…now what?
The doctor calmly tells me that they are concerned about Riley’s bilirubin numbers, not only because they are at “dangerously high levels,” but because they jumped so quickly. The treatment options were presented to me. They were hoping that by adding even more lights (7 total), which was a record breaker in the NICU, that her numbers would go down. The risk of these high bilirubin numbers? – brain damage. Ok. So what if the lights aren’t enough?
The doctor explained that they would check her numbers one more time, and if they remained “high,” which according to her was anywhere from 12-14 (and yes, Riley’s was quite a bit above that range already), then they would have to perform an exchange transfusion. Basically, what this meant was that they would slowly remove some of Riley’s blood, and replace it with fresh donor blood. “But we’re really hoping we don’t have to do this,” says the doctor. Instantly in my head I’m thinking, ok, there must obviously be risks/concerns associated with this procedure, and so I ask what those are. The doctor explained that this procedure would but Riley at increased risk of getting necrotic enterocolotis, also known as NEC . I briefly mentioned this in a previous post. We knew something about this as it is an already known complication in premature infants. Now this procedure would put Riley at an even higher risk of getting it. Briefly, it’s when tissue in the small or large intestine is injured or begins to die off, and causes the intestine to become inflamed or, in rare cases, develop a hole. Google tells me that 1 in 4 infants die from it. Needless to say, this was again, a very emotional day for both Ian and myself. I was just feeling like our highs were really high, and our lows couldn’t get much lower. Again, I knew this experience was going to be a roller coaster of emotions, but it felt like this roller coaster was out of control and about to ride right off the tracks.
Ian walked into our room when the doctor was still present, and had an immediate look of fear on his face (understandably so given the events of Wednesday night). The doctor re-explained everything to him, so I got to hear it twice. This helps me comprehend and remember the presented information.
Shortly following this discussion with the doctor, the next bilirubin check came back, and its as at 17.6. Doctors tell us they are going to go ahead with the exchange transfusion. More tears, and again, a sit and wait game. They informed us this is a very slow process and her room will be set up like an operating room, as it’s a very sterile process, and it can take a couple of hours.
During the sit and wait game, Ian and I tried to distract ourselves since we couldn’t be in the room during the procedure, but it was damn near impossible. My older brother came into town the day before, and he and my mom came for a visit this am. Ian went with my brother to get a beer, mom and I went to get frozen yogurt. Trying to keep our mind off things. Trying but failing.
The 2 ½ hour mark hit, and we started getting antsy. Ian takes a walk by the room to check on how things are going. He came back and said the doctors told him things are going very well, they’re just taking it very, very slow. They were shocked with how well Riley tolerated the procedure, with good saturation on low vent settings. A good sign her respiratory status remains stable. The procedure took a total of 3 hours 15 minutes. Doctors again said she tolerated it well…but why were they bagging her and why was there a respiratory therapist running down the hall when we approached her room. The doctor calmly explained that the oscillator Riley was on decided to malfunction during the procedure (of course it did), and he’s running to get one to replace it, but “don’t worry they’re bagging her and her sats are great.” Oh ok…we won’t worry. Please.
Now, sit and wait. Hoping and praying the bilirubin numbers go down, and hoping no signs of NEC start creeping up. We’re no where near out of the woods yet…again….still.
Initially, Riley’s bilirubin numbers started out looking really good. Her first check was 6.8, then it jumped up to 8.0, and her third one was 8.3. Great, here we go again. And yes, I had already asked the question, there is a chance they’d have to do ANOTHER exchange transfusion if her numbers get back in the “dangerous” range again. Another exchange transfusion = an even higher risk of getting NEC.
Riley continues to have an overflow of lights surrounding her. These lights made it darn near impossible to even see the kid, as her incubator is surrounded by poles, lights, monitors, ventilators, etc. I have no idea how the nurses, RT’s, and docs navigated around all of it. I was starting to feel like I forgot what my child looked like.
On a more positive note, it’s been amazing to see how much the nurses love and support Riley. The nurses would often hug us at the end of their shifts, occasionally having tears in their eyes, and tell us they were going to pray for her during their time off. The one day, a nurse who had Riley the day after her pulmonary hemorrhage came in looking a little more fatigued and wearing glasses. She informed us that she was not able to sleep the previous night because she was up thinking and worrying about Riley. She designed an adorable little bathing suit out of construction paper, marker, and stickers which she put on the outside of Riley’s incubator to try and lighten the mood, and show us how much she cared about this little one who she has only known for a day. We had another nurse whose mission was to change the blood specked blanket in Riley’s incubator to a cleaner, cuter one. She brought in 5-6 blankets and asked Ian and I what blanket we wanted to pick. We went with the one with girly colors and farm animals on it. It did make her little incubator a little brighter. This same nurse expressed that she “loves her so much” and feels they “are BFF’s,” stating that she wishes she had one of those “best friends forever” necklaces with the heart broken down the middle to share with her. The level of care, passion, and expertise from the nurses has been huge in helping Ian and I get through this nightmare.