The past four days have been the most difficult for Gabriel and I in the NICU. Monday was hard with his red blood cell count plummeting. That night not only did he gain 180 grams which is 6 oz (for reference, babies his size should gain 20-30 grams a night) but he also stopped breathing, heart nearly stopped beating, he turned blue, and had to be “bagged” with 100% oxygen. Tuesday he received a diuretic to help him excrete the fluids. Diuretics are supposed to be effective within a few hours, but Gabriel didn’t start releasing some fluid till 12 hours later. Despite the diuretic, Gabriel continued to gain weight. Normally this wouldn’t be a bad thing, but most of this weight is fluid and its in an extremely unhealthy large amount. He’s puffy, swollen, and just miserable. He’s still on oxygen and his nasal canula air flow is 2.5 times higher than its ever been.
I can’t tell you how much it hurts to see him grimace as he’s restlessly sleeping. He’s been crying in his sleep. The hardest part of his pain and uncomfortability is that I can’t soothe him or rock him or rub his back. In fact, I tried wiping off his crusted lips today and his heart rate dropped to 73 (normal range 100-200) and his alarm blared. I caused that. I can’t do anything for him.
Yesterday he swelled pretty bad again. He got another diuretic in the morning. Gabriel has blood tests every day and this blood test showed that his protein levels were really low. Protein in blood acts as a sponge and soaks up water. Without an adequate amount of protein, the water gets absorbed into his tissue. This seems like it explains everything, right? Wrong. He received an infusion of protein and another diuretic. Well, he gained more again last night! So he got another round of protein and diuretic this morning. His body isn’t responding well to the diuretics though. His output is still on the average to low side of what’s normal for him.
Gabe’s doctor ordered another echocardiogram today because his chest x-ray this morning is showing that his heart is enlarged. Two weeks ago Gabriel had an opened valve that should’ve closed at birth. With some medication, it closed. The echo today was going to eliminate the possibility that the valve has re-opened. If it had opened, his body wouldn’t be able to process the fluids, his heart would be enlarged, and lungs would be suuuuper saturated with fluids. This seems like it explains everything, right? Wrong. As I’m writing this, I haven’t been told “officially” the results of the sono; however, “unofficially officially” it’s still closed. We’re left with an unexplained large heart…and we’re back to square one.
Gabriel’s last diaper should’ve been a heavy one because he’s received 3 diuretics since yesterday morning, but it wasn’t. So what do we do when we don’t have answers?? Pump him with some more fluids to get his body to release fluids…but he isn’t responding well to the diuretics.
I hate this. I want an answer! I want a legitimate answer, not one that just sounds good. I don’t want to hear, “this can just be preemie stuff”… What’s the optimal word there?? “Can”. It can also be related to his heart, kidneys, or God please forbid his brain.
Helplessness is beyond awful.