Baby Margot's ICU Hospitalization & Testing

Our sweet baby girl Margot (2 months & 3 weeks old), suffered seizures at home Thursday morning on June 1st . We brought her to the Emergency Room at Maria Ferrari WMC where she then had 4 more seizures, progressively worsening. After several painful hours in the ER, they moved her to the Pediatric Intensive Care Unit (PICU). Once in the PICU she suffered several more seizures until she had enough Keppra and other preventive seizure drugs in her system at a therapeutic level. From there she endured numerous tests such as a prolonged EEG, MRI, CT, Spinal tap, numerous blood draws and IVs, among other tests and swabs no infant should have to go through. It is physically painful to not be able to pick your baby up when they are suffering, to watch the tangle of wires and feel completely helpless to the situation. Luke my husband, and I were hysterical. The EEG showed seizure “sparks” which when strong enough cause a seizure. Thankfully, under the effects of preventive medication these sparks were not materializing into a seizure. Test after test came back normal, leaving the cause of the seizures unexplained. After 4 days in the hospital, she was stable enough to come home, however, Margot was not herself. She had not smiled since Thursday and that alone broke us down. I prayed to see her smile, to show any resemblance of my happy baby. Sunday morning, she gave her first smile and we lost it. We cried for the smile which I so badly needed. Each day at home Margot is getting a little better. She has to take four doses of medication per day and ensure she is able to keep them down. The medicine makes her groggy and irritable at times. Which if you knew Margot prior to this horrible nightmare, you would know she was the happiest, calmest baby. Very rarely fussy. Hopefully within 1-2 weeks the side effects should subside. Prior to this episode Margot was hitting all her milestones, even exceeding them. The genetic testing and amino acid tests will take weeks to come back, we pray they are negative as well. We pray that the seizures she endured will not impede her development or return. We will continue to meet with the Neurology team for the foreseeable future. We are grateful to the team at WMC. Their care and attention to not only Margot but Luke and I was amazing. We will continue to make sure Margot gets the best care until we find the cause of her seizures and is seizure free. So we ask your help, your donation will go to Margot’s stay in the hospital ICU and extensive testing. Any amount will help alleviate the financial stress and help us focus on Margot’s health going forward as she continues to receive monitoring and testing. When you’re pregnant everyone says the same things, “congratulations” followed by all the “just wait” comments such as “just wait until you lose sleep” freedom, travel, showering, etc. what they don’t say is “wait until you see your baby smile for the first time”, or the first time they look you in the eye, the first time they laugh, watching your partner be so in love with them, the intense love you feel that you never knew you could feel. Feeling like they are part of your very core. Margot is the greatest gift we could ever receive. During this experience I felt like my body had been stripped of its vital organs leaving a hallow shell of a person. In the face of this and questioning each and every movement and sound going forward, we will continue to be strong for our beautiful girl. Each day gets a little better and everyday brings more strength to Margot and our family. We appreciate all of the support from our family and friends. One day at a time.