One big scare that comes with having a Tetralogy of Fallot baby is something called a "tet spell." This is when the baby gets upset, cries, and the oxygen saturation levels decrease such that the skin takes on a bluish hue. When this happens, we are instructed to put the baby on his side and push his knees up to his chest to get the blood flow back. We were advised that it probably wouldn't happen until he was around two months old. Consequently, I wasn't too worried about it just yet and hoped that he'd be able to get his open heart surgery before we needed to get too scared about tet spells. Nonetheless, I get paranoid whenever he cries and go straight to him, knowing that crying for prolonged periods is not good for him.
Fast forward to August 22, Ripley was sleeping and I was on DSW.com just finishing up a shoe order for my husband and toddler daughter. All of a sudden, I hear a piercing cry and ran over to the nursery. I picked him up and his body was turning blue, mainly focused on his extremities and his face. I freaked out and held him on his side with his knees to his chest. I called for my husband, who also thought Ripley was bluish and managed to get in a quick picture to reference for the doctor. After about a minute, we were able to calm him and his color went back to normal. It was incredibly terrifying.
I was thankfully able to get ahold of my best friend (a pediatrician who did residency at Johns Hopkins, the birthplace of TOF surgery innovations), my husband's best friend (a pediatric cardiologist who did fellowship at UCSF, where Ripley was born), and a pediatric cardiologist at UCSF that we had seen several times. They all said that my reaction was the right one and we were able to get an appointment with a pediatric cardiologist this Friday. Our first appointment was originally supposed to be on September 8, when the cardiologist officially opens a clinic at our local hospital, but he is making an early trip out here for Ripley. Ripley will get an echocardiogram and we will see if things have changed since we left NICU. I feel nervous and anxious all the time and don't know how I will cope these next weeks before his surgery, which has yet to be scheduled.
Today, August 23, we had a pediatrician appointment that was already scheduled for Ripley's two week visit. The medical assistant was taking Ripley's measurements and he got very upset and started crying. He turned blue again and I was so so worried. Coincidentally, he already had a pulse oximetry monitor on so we were able to see how his oxygen saturation levels and heart rate were affected by the spell. The oxygen level went down to 68% and his heart rate BPM shot up to 200. Seeing those numbers really scared me, but then after being picked up and knees pressed in by the medical assistant, his color started coming back and his oxygen saturation went back up to 100%. I guess I am glad that we were at the doctor's office when that happened, but just so nervous that it's happened again. The pediatrician thinks that the first tet spell may have been brought on by some reflux while he was sleeping and today's was brought on by being mad about the measurements and vital signs being taken. It's hard to know what will set off a tet spell.
I am going to try my very best not to stress out and just manage things as they come until the appointment on Friday. I will let the doctor know my concerns, fears, and also thoughts about timing of surgery. It may be selfish, but I'd really prefer to have the surgery sooner rather than later. The surgeon had already indicated that he felt confident about the success, whether surgery took place at birth or a few months after. He said the main reason for waiting would be so that the baby could get used to things like breastfeeding and being a baby. Though the prospect of open heart surgery is still scary as hell, I'd like to get our family's routine back to normal so that Madison can go back to daycare, we can have the holidays together with family, and not to be downplayed, the costs borne to our insurance will fall onto this calendar year. The thought of reaching our out of pocket maximum for another year in a row would be very very trying for me as I am currently not working and really cannot go back to work for now. It's very hard not to let all of these worries get the best of me and I just want to have my baby be healthy, happy, and thrive.
