Justine – 6/6

Pictures:
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Visitors: Papa (Buddy), Mom (Luchie), Mom (Remy), Jay, Rochelle, Chloe, Alyssa

Moment of the day: The chaplain came in to pray with/for us. She gave Justine an extremely touching blessing and we prayed the Our Father and Hail Mary prayers a couple of times. The three of us blessed some water which we then put on Justine. Justine was completely still this entire time, and very calm. I could tell this prayer was doing its work. And then sure enough, about 10-15 minutes later, she fed from the bottle from me and finished the bottle. So…incredible.

The rest of the night – I didn’t get to get times of everything else that happened:

The neurologist came in to tell us about updates on the MRI/EEG. As we found out earlier, the MRI looked normal for her age. The EEG still showed the same “abnormalities” that they observed from earlier EEGs. The neurologist did want to do a more thorough workup on Justine so tomorrow morning she will have another spinal tap as well as blood drawn for a wide array of blood tests including a genetics test.

She also went through some physical therapy right before her 6pm feeding. She did pretty well on her tummy time. By the end of physical therapy she was pretty upset. It was near impossible to console her. She finally had a seizure during her feeding. I don’t remember exactly what time. She then calmed herself down and then stayed awake until we left.

3:20pm – Seizure after burping.

3pm – 30mL by bottle! She would have taken more if we didn’t run out. I was so happy!
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2pm – seizure #2

12:50pm – seizure. After she was done with her feeding.

12pm – Another attempt at bottle feeding without success. She just wanted to snuggle and Jaz was fine with that.
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11:30am – Dr. Collins paid us a visit with NP Mimi and they said the MRI looks normal for a baby of Justine’s age. The brain is obviously still growing but according to the neurologist, everything looks good. Thank God! EEG results still pending. For now they are going to stay with the topamax along with the phenobarbital. Like us, we thought it was working well because the first day she had no seizures. But then yesterday she had six. They said it is too early to tell if it is not working so we will wait on it a little more. Regarding the feeding, they do want to go ahead with the swallow study with the speech therapist next Monday. They just want to know if there is anything going wrong when she is trying to eat. I expressed our frustration about being here for 2 weeks with no substantial amount of progress other than the surgery. They expressed the same frustration but reiterated that they will not send us home until we know definitively that she is safe. The neurologist should be here later today and may come by to talk again.

7:30am – Called the NICU to get an update on Justine. She did have another seizure at around 1:45am last night. Bumping her total up to 6 in the past 24 hours. Poor thing. They are administering her EEG right now. It did not sound like they were going to do a 24 hour one again, so by the time we get there hopefully they will be done.