You are going to need an advance directive...

So Gesina and I saw her neurologist and it went fine. I described the most recent incidents and together, we decided that those episodes were suspicious but we aren't ready to call them seizures. The plan is that after Gesina has been seizure free for 3 months, we start to change her meds to slowly put the bulk of the seizure management on the oxcarbazepine and lower and eventually wean her off the phenobarbital. This is our long-term goal and I'm happy with that plan. Also, I got a little more direction on the time sensitivity of her meds so I don't have to wake her up for meds in the morning, etc. All said, it was a nice, comfortable visit.

That evening I get the NICU development clinic results in the mail. My 5 1/2 month old at the time of testing is functioning like a 1 month old. Of course this bums me out but I'm not really shocked. Gesina doesn't use her arms in any premeditated way so I know she is behind but I deal with the emotions and decide to move on as best I can emotionally. The next day I go to her pediatricians office. I always look forward to these visits because my pediatrician is very supportive and positive. She usually calms my nerves and I leave with a sense of "Ok, I can do this." Well, this visit was a bit different and I knew it would be from the minute she walked in the door with trepidation in her step. Grrr...

She does the usual routine and then I ask her that while I know milestones don't mean much for a developmentally delayed child, do we have any sense of whether or not Gesina will approach milestones in "batches" or in quick progressions? I know she can't answer specifically for Gesina, but do these kids ever really catch up? Her response, "With her scans, no, she will not catch up." So there it is, hopes dashed.

She then asks me what neurology has told me about her prognosis. I mention that they don't tell me anything, that we won't know more until time has passed. As an aside, I view her "true ability" on all dimensions right now as a moving target and it is simply too soon to tell where they lie on the spectrum of various abilities. We need more data/time to ascertain were she is on these spectrum. But, back to the story. My pediatrician says that she can't believe no one has told me anything and that she was going to tell me what no one will say. She doesn't mean to sound callus or mean, she just thinks I need to know...

If Gesina's brain atrophy gets worse, and we should know more when they do a follow up MRI or CAT scan in the future, then this fall during cold season I'll need to get an advance directive (essentially a living will) for Gesina. If she were to get pneumonia, I need to prepare for what heroic efforts I'm willing to take because I probably don't want to her live the rest of her life on machines and in pain...woowzah. Next, Gesina got her vaccinations and I got to leave with that crushing blow to make sense of. Needless to say, Gesina and I spent that whole day crying and for her, in pain. Today, she is in way more pain (sleeping and screaming) and I'm making sense of it all. Here are my thoughts.

Gesina's scans HAVE to look awful. This would lead to the initial two doctors who told me on her first day in the NICU that it "didn't look good" and for her pediatrician to now have these beliefs. While I have briefly mentioned that I'd like to see the scans to my neurologist he distracted me from the notion and I left it alone. BUT, I'm going to listen to my neurologist and his team who say they are the only qualified doctors to even discuss her prognosis and they refuse to speculate at this time. Why? Because even the experts don't know enough about the plasticity of the brain at Gesina's age. Also, my neurologist and his team had assured me that her atrophy won't get worse. I'm going to have faith in that response and ignore my pediatrician's belief that it could get worse. I'm going to trust the doctors with years of experience with babies with strokes and their recovery. What I do need to take from this experience is that yes, Gesina is going to be developmentally delayed. That it is not likely she'll ever be normal or near normal, unless there is a miracle I currently don't know about and I'm not one to believe in miracles. However, I've gotten a lot of encouraging words from those around me that I love that I'm leaning on.

• If Gesina stayed exactly as she is right now, it would be fine. She is much better at calming herself than she was when I first brought her home. Also, she is an excellent snuggler and she loves her momma. What more could I ask for?
• Gesina has accomplished and experienced more in her 7 months of life than normal babies her age. She didn't get to start at "zero," she had to start at a negative number for development. Thus, being calm most of the time and learning to eat are HUGE milestones and she deserves credit for them!
• Gesina is already a strong, beautiful and very loved little girl. It doesn't matter how she develops, we will all love her anyway.

And my ultimate conclusion, I had to jump through some serious hoops to have a baby. It wasn't cheap in any sense of the word to have Gesina. I fought for her because I wanted to love a baby and introduce her to the world. Gesina is perfect for me; she is in need of a lot of love and a lot of teaching. This is what I fought for and I'm going to enjoy it. If she remains forever in this state, so be it. I'll spend whatever amount of time we have loving her and teaching her about the world around her. Screw those brain scans, I'll just do what I can to ensure she uses whatever brain matter she has as effectively as she can!

Teething

I believe Gesina is teething. For the last two weeks she has had days where she is pretty much inconsolable. If she's awake, she's crying and I have to hold her. I love holding her except when she turns and wails directly in my ear. Here's the face I see when she's wailing in my ear:

And note that her outfit has a crab on the side... I love how witty I can be with baby clothes! I can make a statement without ever having to say a word ;-)

Last week was the first week Gesina didn't have a doctor's appointment. We didn't know what to do with ourselves. This week we see the neurologist and her regular pediatrician. As usual, right before her neurology appointment some odd neurological incidents occur. On Friday she started looking up and her eyes rolled back. It was REALLY quick but it happened and I don't know if it was a seizure or not. On Sunday, she was the "Gesina Monster" all day and I had to wake her up to give her her meds before I put her to bed. When I woke her up, she was "looking" around VERY wide-eyed. If I didn't know better, I'd say she was looking around like she could see for the first time or that she was overwhelmed with sight. To make it more unique, her eyes looked like they were going a little cross-eyed. By the time I got the camera on my phone on her, it all stopped. I blew in her face to see if she was responsive and she was.

My current focus is on teaching her to see. We've gotten her to eat (she takes about 5 ounces each bottle now!) and now we've got to get her to see. I've been doing a lot of research on cortical visual impairment. It is the leading cause of visual impairment in first world countries today. These babies didn't used to survive and because of technological advancements, they do survive. So Gesina's eye structures are normal, but the visual pathways in her brain are effected by the stroke. In other words, her eyes provide pictures but her brain can't interpret them for her. To build that connection she has to slowly learn to see and make sense of what she sees. Unfortunately, teaching her and other babies with CVI to see is such a new phenomenon (the first assessment tool was published in 2007), that I'm going to have to make it up as I go. Eye doctors, vision teachers, etc. are not all in agreement that CVI is a real phenomena that is even in their purview so using the 2 or 3 sources I've found, I need to be creative. In my research I've found that one of the more promising approaches is... using CVI friendly apps on an iPad! So yes, Gesina will be a 7 month old with her very own iPad with a military grade case to keep her slobber from ruining it :-D I think her vision teacher will be somewhat helpful but she has said there is no rush to get started teaching Gesina to see... according to my research on CVI, there is a window of opportunity and the range of it varies from 2 months up to 6 months of age (and we'd have already missed it if this is true) and according to another source, up to 10 years of age. This makes me a little leery of the amount of help I'll get from the vision teacher.

I'm coming around to accepting the fact that Gesina doesn't have milestones like other babies, she has "inch"stones. There will be no day when I wake up and "it's like she's a whole different baby." Gesina's inchstones don't work like that. Every advancement is hard earned so far (teaching her to eat, to calm herself, to deal with her acid reflux, and now to see), and I may just smack anyone who says anything will just happen one day. Further, when she does reach a typical milestone (rolling), she does it once and never does it again. I've stopped watching for milestones altogether as it is an exercise in futility and emotional turmoil. What I do know is if I live in the present and not extrapolate to her future, I'm better able to deal with her challenges. I can see her for who she is and appreciate that. For example, she is so adorable that she has a toddler at daycare that visits her everyday. The toddler has to see "the baby" so Gesina already has a fan club. She doesn't smile and coo like other babies, but she has a big enough personality without all that that she has a fan. That is pretty neat.

6 months!

We have reached an amazing milestone today as Gesina turns 6 months old! It's her half birthday ;-) For a fun comparison, and to remind us where we've been, I have Gesina at 2 days old on the left and Gesina today on the right. I'm so grateful we've made it here!

What a journey we've been on in 6 short months which includes some of the following memorable moments.

• Entered day 2 of her life with the incriminating statement that "her prognosis is bad."  I didn't expect her to live through the day.
• Spent the next 2 weeks unconscious and a total of 53 days in the NICU
• Came home on an apnea monitor, an NG tube, and feeding pump. I was a terrified, hot mess as I tried to manage my new baby and all her equipment.
• Months of only screaming and sleeping. I thought I would lose my mind as we tried to manage her acid reflux, disinterest in eating, vomiting, and generally being uncomfortable and overwhelmed by her environment.
• Months where Gesina wouldn't let me put her down. She demanded to be carried everywhere. I both loved this time and was exhausted by it.
• Juggling 4 therapists/home nurse visits every week and at least one doctors appointment each week. 
• Watching her have seizures and upping her meds... weekly.
• Spending a few nights in the hospital and learning she has brain atrophy and cerebral visual impairment.
• Finally, Gesina starts to calm down and self-soothe! She spends the large majority of her day contentedly kicking and swatting at toys on her activity gym.

A very strange journey but TODAY we are in a great place. My 6 month old is in the 50th percentile for height, about the 12th percentile for weight, and less than 1 percentile for head circumference (but her growth curve is looking good). Her GI doctor admits that yes, her drinking only 12-14 ounces a day sounds horrible, but she is a healthy baby. We are adding a nutritionist to the mix in July so no worries there. She is eating a consistent amount that is slowly moving upwards and is doing an amazing job with a spoon. She is content and seems pretty healthy... what more could I ask for ;-) My hope for her is that with hard work, we can maximize her abilities. I also want her to be strong, independent-minded, and kind. She doesn't have to be "normal" to accomplish these things.