She smiled!

So Gesina smiled at (insert drum roll)... her iPad! Grandma and grandpa scored big on buying her an iPad because it is a "toy" that makes her happy :-) She was in my lap and we were playing with her Tap and See Now app (by Little Bear Sees) which is a black screen and a red animal moving on the screen. When you touch the animal it gets really large and makes a reinforcement sound. I customized the program to make all the sounds be babies laughing, hee hee. As we played (she randomly slapped and I tried to guide her hands), I saw her reflection and she was smiling! I had to ask Adrian if she really was smiling and he said yes! By the time I got the camera, this was what I caught of the moment... I see amusement still in her face.

I'm absolutely in love with my child. No question about it. She attended her first wedding on Sunday. Our neighbors informally renew their vows in their backyard gazebo every year. As we happened to be in the backyard they invited us over. I got to read a poem and Adrian got to play the role of the judge. Gesina was nice and quiet and by the end of the ceremony, Adrian cried more than Gesina ;-) It was a very touching and emotional experience and I'm glad we got to participate, even if I was in my pjs and Adrian was in his gardening clothes! Gesina was the flower girl in her pink onesie.

I am, I admit, having a few moments of self-doubt and sadness. Now I'm thinking about that pedicure I got the day before my labor started (my birthday present to myself), did that massage chair cause the stroke? I don't know why I keep trying to find a way to blame myself but that instinct just won't go away for good. I do get breaks from it, but the thoughts come back when I least expect them. Rationally, I know that beating myself up for something I can't change is counterproductive. These thoughts usually pull me out of the melancholy, but you can't help yourself every now and again going to the dark emotional side of what happened. It doesn't help when doctors go "dark" on me and in response I re-read Gesina's medical records. As I look for confirming information that the situation is as dire as some random doctor/therapist/professional says, I tend to find new things in her records that cause new worries. Was microencephaly mentioned as an adjective by the neurosurgeon consult to describe Gesina's head circumference (she is in the less than 1 percentile for head circumference but her growth mirrors all other babies) or is microencephaly used as a diagnosis (which is a horrible diagnosis - Googlers beware)? Another word mentioned means there is less folding of her brain tissue due to the stroke and that is also bad. Is knowledge power?

I try to remind myself that these dreaded scans are a snapshot of Gesina's recovery from a stroke. They do not capture the dynamic nature of her recovery. Also, what matters is how Gesina is doing TODAY. But for a future-oriented person, focusing on the moment I'm currently in is a dramatic change from what I'm used to. I guess I'm going to slip up every now and then and worry about the future... caught up in my 5 year plans. When these slip ups happen and I begin to worry about Gesina's future, I have to find a way to stay in the moment and remind myself that no matter what, I love her more than anything and anyone else in this world. And I go back to my mantra, in 15 years I'll know more about what Gesina can do, and I don't want to look back and regret not enjoying her every moment of every day.

Blah, but next up is her new PT through early intervention (finally "fired" my other PT), an appointment to begin her additional PT/OT using a medical model in addition to her state sponsored EI therapies, the feeding clinic in Milwaukee and a ride on the Ferry to go to a family reunion in Michigan. So we are adding members to "Team Gesina" and collecting hugs and kisses from family. Sounds like a few good weeks ahead of us :-)

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.

Blah

I've had a week of truly seeing, processing and emotionally dealing with the reality of Gesina's recovery. At Gesina's new daycare, I get to really see what babies her age and younger are capable of. The emotional expression of these babies is so rich and detailed while Gesina's is... not. The abilities these babies have to play, grab objects, and generally interact with the world around them is literally shocking to this first time mom.

Today Gesina saw a teacher for the visually impaired for the first time and she does have essentially no response to visual stimuli at this time. A few weeks ago I had requested Gesina's medical records and have been pouring over them and googling medical terms ever since. It seems some of the damage in her brain due to the stroke is in her "occipital horns" which effects her vision. Also, her eye doctor, who seemed relatively useless at the time when he exclaimed her "visual structures are normal but we don't know what she sees", actually did catch a few things according to his medical report on her. Gesina has "cortical visual impairment" which is a fancy medical term for brain damage that effects her vision. The outcome of this is unknown as kids in this catch all category can gain some vision with therapy (and luck?) but will never have "normal" vision. It's all a matter of teaching the brain to "see" a few items at a time to start to rebuild visual pathways. Gesina may see some things but her brain doesn't pull it all together to make sense of what she is seeing... for the psychology folks out there, she doesn't have any "Gestalt" in her perception. Moving forward, helping her develop this ability to put pieces of information together to see a whole is a slow moving process and requires a lot of work... similar to her sensory disorganization, her stiff muscle tone, her ability to eat from a bottle, etc.

So this is a blog post where I rant and rave about the situation I can't change. Please indulge me and I promise to find the silver lining soon but just not today. I was a very lucky kid. Things always seem to come rather naturally for me. I got good grades, was in the 50th percentile for everything (even time to run a mile in elementary school) and my parents didn't even need to bother with parent-teacher conferences because I was so "vanilla". College was a fun experience for me and graduate school was an appropriate challenge. Don't get me wrong, I did work very hard for my education and in high school, for my singing awards, but I was pushing envelopes that not all kids had the opportunity to push. In all, I worked hard at some things and learned the value of hard work, but I didn't work hard at ALL things. Lots of things came naturally to me.

Fast forward to Gesina, and like all parents you just assume your child's experiences will be similar to yours and hopefully, even better! After Gesina was born I realized rather quickly that wasn't going to be the case. I live by the philosophy of "expect the worst and hope for the best" and generally, I agree with my Neurologist when he said there were times in the beginning that he and I didn't know if we would be HERE with Gesina alive and fighting so enjoy the moment as we weren't promised to get where we are today. BUT, as a mother, I die a little inside every time I see/realize/acknowledge that Gesina doesn't just get to fight to get a singing award or to get a PhD. My little Gesina the warrior princess has to fight to eat, fight to move her arms, fight to maintain a state of calm when she can't see the world around her, in other words, just getting through a day is a constant battle for my baby. While other babies at the daycare easily drink from a bottle at 6 weeks, grasp toys at 4 months, interact with the caregivers with glee, my baby is fighting HARD to just live with the constant pain of acid reflux and keeping food down. It is just not supposed to be this way.

Rationally, I know it could be worse and while Gesina fights hard today, at some point these activities will come easily to her. I also wonder what amazing lessons Gesina will learn about hard work as she is learning these lessons now, at nearly 6 months when I had to wait until high school to start dedicating myself! But emotionally I can't help but worry about how this will all work out. Why does my little girl have to suffer while others get to breeze through, including me? I'll be better tomorrow but I just need to day to process. I also realize that no matter what, I'm the luckiest woman in the world to have Gesina in my life. She is beautiful, sweet, strong, and I already know, she loves her momma.

While everyone else is in Hawaii...

This week my academic discipline is having its national conference in Hawaii... so this is what I've been up to while my colleagues and students live it up in paradise!



You may think she hated the peas, but really, she ate them and does a great job with the spoon. So far she has been okay with all the veggies EXCEPT green beans. She fake "fell asleep" when I tried to feed them to her one time. The next time she let me fill her mouth with them and then COUGHED them in my face. She is a "spirited" one, that girl! Today, she gets to try her first fruits. I really hope I can find something, food or toy, that she just obviously loves. I want to see Gesina experience a greater range of positive emotions.

So the hematologist did talk about Gesina having the Prothrombin gene mutation. I got tested and I have it too. This means she and I are more susceptible to blood clots so whenever a drug has the side effect of blood clots, she and I will really need to pay attention to it. We are slightly more likely to get a blood clot in our lungs or in the vein in our legs. Main things we need to do are be healthy, be sure to walk around on long flights, and be forthright about having this condition for surgeries.

The last week has been consumed with finding child care for Gesina. Not surprisingly, individuals' are afraid of her condition so I got very few applicants. Of that lot, most were older women doing it for the money. Well, I hate to tell them this but, I don't have a lot of money! I did luck out though when I happened upon a daycare that specifically caters to special needs babies and kids :-) The center does all the therapy exercises and stretches during the day so I don't have to try to catch up with it all in the times that I have her. They are also going to assign one person to Gesina to ensure she gets all the therapy, etc. that she needs. Daycare didn't seem to be an option for me because I teach at least one night class a semester. Well, I found a college student interested in being an early intervention specialist with no experience in that field yet. She will be taking Gesina on while I teach my night class. It may not be ideal to have daycare and a sitter but I have a team that all seem motivated and interested in Gesina's development so my fingers are crossed that it all works out.

Gesina was seen by the NICU development clinic and the big message was... I need to fire my Physical Therapist. My current PT doesn't think Gesina needs PT every week and wants to cut down to once every other week. Her rationale is that Gesina needs to work on being able to calm herself before PT can do her any good. Well, I've been annoyed with my PT from the first day I met her because she has erroneously determined Gesina has no gross motor skills at all and many other horrible things. We (me and my babysitter) tried to tell her that she was overreacting and that Gesina has many of the skills PT claims she doesn't. In fact, we have even videotaped Gesina doing the activities PT claimed she couldn't do and showed my current PT these videos. The OT at the NICU clinic who did Gesina's assessment says Gesina needs PT more than ever right now as she has obvious need for gross motor skill development in this critical time in her development. Gesina is at risk of developing cerebral palsy and with PT and OT, we have until she is one year old before they can determine whether or not she has CP. I have no idea if we can use therapy to avoid CP as an outcome for Gesina, but I'm going to do everything in my power to try to avoid it if I can. Having my current PT back out of weekly therapy because Gesina is fussy seems like a cop out. It's her job to be able to calm Gesina enough to help her benefit from the therapy. My mantra for Gesina's therapy is we do what is best for Gesina... not what she likes and not what is easiest for us, we do what is best for her. If that means ticking her off or dealing with a fussy baby, so be it!

Here's a poem that was shared with me that really does capture what it's like to be a mom to a special needs child. I encourage you to give it a read and after you read it, you'll understand what I mean when I say, I like "Holland"... The poem is called Welcome to Holland!