Ups and downs

Today was a long day filled with ups and downs. We had the first doctor (a fellow, so a low "woman" on the totem pole) say "when you take her home" which brought tears to our eyes. Just the idea that some day we may actually be able to bring her home was astonishing. Then my friend Amy and I went to the holiday party for NICU parents. I met a few "veterans" or NICU parents who now have toddlers who got to go home and made it through the NICU. It was more important than I realized to talk to these veterans. They really helped me see that I need to be there for Gesina with just the same level of gusto in month 4 as I am in week 1. This is a marathon and not a sprint so I really do have to focus on creating a schedule and making sure I take care of myself, Adrian and any semblance of a stable home life. They also reaffirmed that yes, there are a lot of ups and downs in the NICU. These were some of the ups today.

In high spirits we saw Gesina but then the seizures started again. We had to bring her "emergency inhaler" seizure med back up to .10 and they increased one of the other seizure meds. It is really distressing to watch her have these seizures as you feel so helpless and you would do anything to trade places with her. After seeing this and feeling a bit down, the fellow suggested we talk to the neurologist on the phone. We haven't met him yet and agreed that it wouldn't hurt to get an update from him on what is going on with Gesina. The fellow assured us that the neurologist is a straight shooter; if he thought there was no hope, he would tell us. He would also tell us if he didn't know the answer to a question as well. So once we got the doctor on the phone, he gave us a summary of where we are with everything and how we got there. It seems that when this all started, Gesina did have a few strokes and the seizures are a symptom of that. We don't know when these strokes happened but they are showing some improvement. At this point, we don't have any idea why she had these. Oddly, not knowing the cause of the strokes works in Gesina's favor. The doctor said that about 80 to 85% of the time, we can't determine the cause of strokes and seizures in newborns. The good news is, for those times without a determined cause, the probability of re-occurrence is actually lower than when we can determine the cause of the bleeding in the brain. He also said he is pretty confident that he and his team will be able to get these seizures under control. What we don't know is the long-term developmental effects of the bleeding in the brain and these seizures. With Gesina largely asleep all the time, we can't determine how well she is able to function. For example, can she drink from a bottle or will she need a feeding tube? We have no idea what damage has been done and at this point, we can only hope that she is as resilient as everyone says babies are. We also just hope the doctors can find the right cocktail to get these seizures to stop (or the bleeding in the brain will heal) so more damage isn't done.

So, tomorrow is another EEG and the doctors will regroup and put a new plan in place. I will work on getting on a schedule so I can ensure I'm at my best for Gesina everyday. The doctors' job is to find the right cocktail and my job is to be Gesina's mom. I need sleep and to organize the chaos as much as I can so I can be a good mom, not a teary eyed one! Time to mom up again...