Justine – 6/7

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Visitors: Papa (Buddy), Mom (Luchie), Erick, Abby, Annie, Eli, Tita Ging, Melissa, Cassie, Xander, Jun

6:45pm – Seizure #4. During the remainder of her feed through the NG I was holding her and she seized again. Oxygen dropped to 70s again and needed blow by oxygen to recover because her lips turned a little blue

6pm – Jaz fed her 15mL from the bottle. She did really well pacing her but at the end her stridor started to sound a little wet so we stopped.

5:20pm – Seizure #3

4pm – Physical Therapist Cheryl came in to talk to Jaz and I about some of the things we can work on with Justine when we take her home – specifically “tummy time” so she can learn more coordination and play. It was quite an interesting conversation as it was things I honestly never thought about.

3pm – Speech Therapist Holly came in to feed Justine after she was changed and assessed by the nurse. She did well, and took down 18mL before sounding like the stridor had gotten a little “wet”. The concern here is that she may be aspirating some of the formula into her lunds which we obviously do not want. She took the rest via NG tube.

12pm – NG tube feeding since she just had the spinal tap.

11:30am – Nurse Lara and NP Chris performed spinal tap and was finally successful at getting some spinal fluid. They said it was clear, which is a good sign. Finally after the third time they were able to get spinal fluid from Justine!

11:15am – NP Chris came in to tell us that she will be administering the spinal tap in about an hour or so and it should take about 45 minutes to setup and perform along with some blood tests.

11am – seizure #2. Of course just when we walked in she was just recovering from a seizure. Her HR went up to the 190s but her oxygen dropped to about 85 but no oxygen mask was needed.

7:30am – Called the NICU to see how she did last night. She did have one more seizure last night right after we left around 7:45pm. And then she had another one this morning a little before I called at 7:15am. It took her a little work to recover from that one. The nurse said she had to administer blow by oxygen to recover since she dipped to about 68. So for those keeping count, 2 days ago she had 6 seizures and yesterday she had 5 seizures.