104.4 degrees. Delirious. Mastitis. Pain, and nursing, and my hair on fire. My twelve-day-old baby boy laying beside me, squeaking to nurse. I roll over and put the painful breast in his mouth, and notice a few spots of blood on the sheets. Damn, his belly button is bleeding again.
Sleep, and pain, and hot.
Nurse, nurse, nurse. Never fully waking. A little more blood on the sheets.
He won’t settle. He must need his diaper changed. My hair is on fire. I rouse myself enough to grab a diaper, and pull Ryder towards me. There is a puddle of blood on the bed. His umbilical cord stump fell off when he was just six days old, and it hasn’t stopped oozing since. A drop or two of blood each day. We weren’t worried. Now this? It’s like a wound. He is bleeding. I try to shake the fever out of my head, and grab some clean gauze to hold pressure on his abdomen. Starting to panic, I try to gather my thoughts enough to make a plan. We need to go to the hospital. It’s Sunday. This is a lot of blood.
I scoop Ryder up, try not to lose my balance, and make my way slowly down the stairs. I feel like I’ve been through a meat grinder and I can’t stop the tears. Why this? Why do I have to be sick? Why can’t he just be okay? Why does Brock have to go back to work tomorrow? I’m sobbing as I walk into the living room where my husband and mother-in-law are chatting. “He’s bleeding,” I choke out, “Badly. We need to take him to the emergency room.”
We gather a bag together of items, dress the baby and put some gauze over his umbilicus. I checked online – the ER wait at the Hemby Children’s Hospital is 2 hours. We’ll have to risk it. We pull into the parking lot, and I’ve convinced myself everything is fine, he’ll have stopped bleeding, and I can go home and get back in bed. But the circle of blood on his onesie is growing, and I start crying all over again.
Through the sliding double doors of the ER. Hazy impressions of a clean, child-friendly waiting room with many full chairs, many crying children. We walk over to the front desk and I blurt out through my tears, “He’s two weeks old and we can’t get him to stop bleeding.” I pull up the blanket and show them the blood stain, now the covering most of the front of his belly. The two triage nurses look at each other and one waves us back, “Come on through, first room on your right.”
The next several hours are a frustrating, impatient blur. Nurses asking questions, taking down information. Seconds and minutes rolling by on the bright red clock above our door. Changing gauze every time one is soaked with enough blood to stop working. By the time we see a doctor, we’ve already been waiting for two hours. He smiles as he walks in and introduces himself, then takes a look at Ryder’s cord stump. We are pleased that he listens as we tell him that Ryder hasn’t had a vitamin K shot at birth and is probably not clotting because he’s vitamin K deficient. The doctor tells me to hold pressure on the bleeding in a very specific spot, and he’ll come back and check on us in about 15 minutes. I don’t bother to tell him that I’ve done that already, but let him go through his process.
An hour and twenty minutes later, I send Brock out to get someone. We’ve been forgotten. They are busy. Whatever. This ‘holding pressure’ isn’t working, and my son is losing blood. The doctor comes back in and notes that he’s still bleeding, says they’d like to do some bloodwork to make sure nothing is seriously wrong, and then decide what to do from there. The next person that walks in our room is coming to stick a needle into my very, very tiny baby. I have already started crying, but refuse to leave the room because I feel like I need to be there for him. My worst fear has always, always been having a sick child, and having to be in the hospital and it was coming true. Painfully, awfully true.First needlestick. Ryder screams, and screams. I can’t take his pain. I can’t make them stop. I want to hit them, yell at them, make them leave. I can’t make him stop. I know it hurts, baby. I’m so sorry. I tell myself we’re doing this because we need to, and it’s to make him better. No blood. They’ve blown the vein.
Second needlestick. A few drops in a vial. It should be enough. Screaming, screaming. A few more in a second vial. The vein blows. This may not be enough. We’ll have to try it.
I hold my sweet baby close and nurse away his tears. “I’m sorry, baby. I’m sorry,” I whisper, trying to heal both of our wounds. We wait and wait for the test results as our baby bleeds.
An hour later, they come back with the proclamation that his CBC was normal, but they couldn’t run his “bleeding times” to see if he has abnormal blood clotting because they didn’t get enough blood. They want more. Another stick. So, so many more tears. I’m so angry. The vein is blown, ANOTHER vein blown, and we are all crying. STOP HURTING MY BABY. Brock raises his voice, “I don’t understand why you can’t get the blood from his belly button. HE IS BLEEDING. Just gather up the blood and have them test that!”
The nurse pauses for a moment, considers, and decides to try it. She says she could probably get in trouble. She tells us if the results come back abnormal, they’ll have to run them again to make sure they weren’t false due to collection method. We are fine with this. We wait another hour, and the doctor comes in looking grim.
“I’m sure you were told that the CBC came back normal. But Ryder’s bleeding times are very, very out of range. We’re going to admit him to the PICU. You’re going to speak to a pediatric hematologist and the pediatric intensivist. He needs a Vitamin K shot and a blood transfusion. I’m sorry.”The bed shook with my sobs. I held Ryder so tightly. They were going to have to start an IV. Another needlestick. They needed to draw more blood. My poor, sweet baby. This isn’t fair. This isn’t fair.Thankfully, mercifully, the nurse was able to start the IV on her first try. His little arm was taped to a board, and they started the Vitamin K infusion. We waited for 30 minutes while the fluids ran in, and then were transferred up to the Pediatric Intensive Care Unit. So many wires. So many tubes. Ryder was taken away from me and put in an isolette. I cried and watched as they assessed him, took his vitals, changed his diaper. Everything felt wrong, and hard, and cold. I just wanted to hold my baby, and sing his tears away. I wanted to nurse him and love him and assure him the world wasn’t a scary, loud, painful place. The nurses made sure I kept my distance until their work was done.
More waiting. The pediatrician on the floor finally came in and told us the plan – we’d spend the night, and see a hematologist (blood doctor) the following morning. There was a room with a bed in the PICU, so they’d transfer us there, and we could all try to get some sleep. I had been so focused on my baby, I had forgotten how sick I was. And yes, I was finally allowed to nurse him. We moved into our “room” and got settled. I pulled Ryder into the bed with me and let him nurse to sleep. I stuffed a few pillows between me and the bed railings, and closed my eyes. I didn’t bother to put him back in the isolette… and wondered if they’d notice.
At 5am, the nurses came back to draw more blood. We asked why, and were told to check for signs of blood infection. I resisted, pointing out that he hadn’t had a fever, and his white count was normal the night before, but they stuck him again and drew blood without bothering to heed my protest. When they were finished, they put him back in bed with me and let us go back to sleep. I was angry. But he was with me. He’s not bleeding.
The following morning, we were told that all of Ryder’s follow-up labs came back normal. He was officially given the diagnosis of “hemorrhagic disease of the newborn” which is caused by a vitamin K deficiency, and the reason that nearly all newborns birthed in a hospital are given a shot of vitamin K at birth. Mixed emotions. It didn’t make sense to us. We KNEW that he didn’t have his shot, and we KNEW that he was probably deficient. We chose not to have it done, but also noticed when there was a problem and addressed it immediately. We didn’t understand why they treated us like it was ‘no big deal’ and let us sit in the ER for 10 hours… until they got blood tests that scared them… and then treated us like it was an ‘intensive care’ worthy emergency. When it was just a vitamin K issue. That we had TOLD them about.
At discharge, we were mad about the way we had been handled. Thankful that everything was okay. Relieved that we would be able to go home. The adrenaline from all of the fear and pain had broken my fever, and I actually felt better – my body had chosen to fight the mastitis and won. Ryder was no longer bleeding, and it was sunny when we walked out of the hospital. It felt good. And then, I realized that I had had to live through my worst fear. It was exactly as bad as I thought it would be… but I survived. And Ryder was going to be just fine too.