I brought A and B back to tell there sister goodbye before they left for a week long vacation to wyoming with grandma. When we got to Capris room she had 3 nurses around her and her alarms were flashing red. One nurse asked me if this is the color Capri normally is? I looked down at my sweet baby and she was grey. She was trying to cry but she was gasping so hard for breaths that her cry were muffled. I told her no that wasn't her color and looked up at her monitor to see that her oxygen was in the 50s. I have never seen it that low. Soon after we got there our nurse came running back from lunch and started cranking up her oxygen, picked her up to get blood circulating and called the cardiologist and neo natal dr to get there quick.
i frantically took my other children back to the waiting room. A was crying because he didn't get to hold his sister and tell her goodbye. I threw them into the waiting room, told my mom Capri wasn't breathing and ran back into the NICU. When I got back her oxygen tank had been turned up as high as it would go and she was still in the high 50s low 60s. They had me hold her to see if i could get her to calm down and breathe. I wrapped her up and held her close to my chest. Looking down on her i could see her gasping for air and her chest working harder than i have ever seen it work. Xray came to her bedside to take pictures of her lungs and make sure they were okay. The respiratory therapist came over and changed her cannula to a high flow one so they could give her more oxygen. Cardio came and did an echo.
My mom was still in the waiting room with my grandmother and children. i texted her and let her know they could come back and say goodbye because they needed to get on the road and these tests went going to end anytime soon. The kids came and sat with me, held her and kissed her and told her how much they loved her. I put Capri in her bed so i could hold my other babies before they left. I have never been the type of mom that worries about something happening to my kids. I have always known they will just be fine. Since Capri I over worry and am afraid to let anyone watch them. The 8 hour drive it took them to get to wyoming I spent worried and stressed that something was going to happen. I hate this feeling of worry.
After my family left i sat back down with Capri and realized how tired i was. That last hour of watching her not be able to breathe took every ounce of energy out of me. I could barely keep my eyes open. Her oxygen was back up in the 90s and her heart rate was starting to go down. I laid her on my chest and fell asleep. About an hour later the dr.'s woke me up. They had looked at all of her tests and everything came back normal. They don't know why she couldn't breathe. They always chalk it up to, "well sometimes these things just happen in ebstein babies" After they left the nurse and I were talking about why she is having these and how its funny that she just snaps herself out of them. Then I looked at her monitor and her heart rate was 175. She was in SVT. I have never been with he during one of these episodes. I looked down at her and she was quietly sleeping. If I didn't have the monitor i would have never known something was wrong. The nurse called the dr.'s back and they told us to watch her and try to wait 20minutes before giving her any medication. I held her close as my eyes were glued to the monitor. About 10 minutes into the tachacardia her heart rate suddenly dropped to 70 and she went into bradychardia. She then slowly brought herself back up to the low 100s and it was over.
I cant wait to get our baby home so we can stop having to drive 3 hours a day. So I can lay with her and cuddle her with out getting tangled up in all her wires. So the kids can be with her for longer than 5 minutes. That being said I am SO glad she is still in the NICU while all of this is happening. I hope that the dr.'s will figure out why she is suddenly having so many issues and will be able to fix them soon