Laughs, giggles, and reflecting on year 1

So the good news is after 11 months, Gesina laughed and giggled! And I got it on tape!

She is a daddy's girl and finds him to be the coolest person she knows. She also smiles at new voices. I'm not taking it personal that when I talk, she cries louder or when I pick her up, she fusses. I know I'm the one giving her meds and trying to get her to eat so I'll take the "hit" for now but I will turn her into a momma's girl eventually!

In an effort to add more fun to life, we went shopping. Dr. Aunt Amy decided to jazz up Gesina's look and she wears it well...

So things for Gesina are going well. She is having more good days than bad lately and you'd think I'd be ecstatic. But as it gets colder, the memories of the NICU are sneaking up on me. Seeing Gesina ready for her g-tube surgery, with all the needles and tubes, I had a moment where the NICU emotions washed over me like a tsunami. Of course, that was quickly put into perspective with the "she's going to die soon" crap. But I anticipate these emotions are going to come and go as we move into the winter months.

As we get closer to Gesina's birthday, I've been reflecting on all that we have survived in the last year. What we've gone through is truly mind boggling. Just when you think it can't get worse, another doctor tells you your baby's going to die. I now look at all the products marketed to new moms and their babies, with their constantly present disclaimers that "if left unattended, your baby could die" messages that used to terrify me, and I get mad. No mother should be made to live with the constant fear that something horrifying is going to happen to their baby. Cut new moms some slack. I was just reading recently that if I put a jacket on Gesina in her car seat, I could INTERNALLY DECAPITATE her. Seriously? That's the messages you bombard new moms with? Let the mom's with medically complex kids worry about their babies dying, because it might happen to us. Leave the mom's with babies born healthy alone to enjoy motherhood. It takes some serious soul searching and gumption to survive being continually told that bad things will happen to your child and that milestones may never be reached. To pull yourself out the depths of despair that you feel as you initially here these things, and come around to finding the silver lining every time is emotionally draining and exhausting. I'm sure at some point I'll smugly announce that this experience taught me "how strong I am" or "how to be a good mom" but I'd rather have not been tested this way. I'd rather not have to live with the knowledge that my beautiful, perfect baby girl may leave me early. No matter how much I love her, protect her, and provide her with the best care available. That this is NOT a just world, where only good things happen to good people; that I can't WILL her to good health. So those mothers out there with perfectly healthy babies, kiss them, enjoy those milestones and do NOT obsess about all those negative messages trying to scare you. As for me, I will continue to reflect on how we survived the last year and be a bit melancholy until December 4th. But come December 5th, we will begin Gesina's next year of life with a fierce focus on not just surviving our lot in life, but THRIVING. More adventure, more experiences, and more giggles. I can't keep waiting for things to "settle down" before we embrace all that life has to offer us, because settling down may never happen. Instead, we are going to thrive. We won't put off for tomorrow the fun we could have today. Gesina and I will run a 5K together, even IF I have to push her along in a jogging stroller (and a blanket over her face because she hates the wind :-)). Year 2 is going to be awesome and I can hardly wait.

Hope Floats

My neurologist, Dr. Shah called and we now have a little hope. Essentially, it all comes down to a judgement call. Clinically, Gesina fits the description of Ohtahara Syndrome (OS). So if you were to describe her seizure experiences, the timeline of her seizures, and the difficulty in controlling them with meds so far, she fits OS. However, if you look at her EEGs, she does not fit. She has not shown the suppression-bursts described with OS when you read her EEGs. Thus, some neurologists would conclude that she has OS, however Dr. Shah is not one of them. To make such a damning (my word) diagnosis, Gesina would have to be textbook OS for Dr. Shah to call it. Why? Because the label does not help her and it carries the weight of a miserable prognosis. It doesn't change her treatment plan of seeking the best meds to control her seizures as stopping the seizures is paramount to protecting her from further brain damage. Thankfully, she does not seem to be having seizures that we can't see clinically, meaning she isn't just seizing all the time.

So, what now? A few weeks ago we tried a new drug with the possible side effect of a "deadly rash"... well my sensitive little monkey started getting a rash so we had to stop that immediately. We have her started on a new drug now that is supposed to help "normalize" the EEG according to what I've read. The Children's hospital added another so she is on 4 seizure meds at the moment... we are weening her off one of them but it looks like we are super serious about getting these seizures in check. At this time, we can't say she doesn't have OS but we are not convinced she does. I'm okay with that because it really does give me some hope... maybe she won't die in a year?

As for the g-tube... get a g-tube they said, it'll make your life easier, they said... after 4 days of constant irritation, crying, vomit, and tylenol I went back the GI doc this morning. They've determined her pain isn't g-tube related (for medically complex kids, I think the "not my problem/domain" response is common). The gj-tube was suggested but thankfully she has finally stopped crying and I'm more slowly introducing food through the tube. I'm physically and emotionally exhausted at this point. But unlike everyone else I know, I haven't been as sad. The reason why? I get to look at this beautiful face everyday and she thinks that today is no different than last week... and that's the way I like it!

 

When the worst-case scenario becomes reality

I'll start this post by saying, we will be seeking a "second" opinion from my usual Neurologist. With that said, we went into Children's of Wisconsin for a g-tube and came home with a few years to live.

We went to get Gesina's g-tube and thankfully, that went well. However, in our hospital room a few hours later Gesina started having weird episodes that she had actually started having the day before. The episodes the day before surgery were odd enough that I had gotten video and was going to keep an eye on it. Knowing Gesina had been slightly under medicated for her seizures (weaning off one med, ramping up another) I planned to keep an eye on it. Well, in her recovery room she had the episodes but more severe and more often. She would startle with her arms, take in a loud quick breath, then cry like she was terrified. This would happen quite a few times over the next few hours. We were quickly transferred to neurology for another video EEG. They came back with the news that it's not infantile spasms, which I was happy about, until they told me what they do think she has... which is worse than infantile spasms.

The neurologist at CHW believes Gesina has Ohtahara Syndrome, which is very rare and characterized by progressively worsening, difficult to control seizures with profound and severe mental and physical disability. It is my understanding that those with this syndrome usually die at about 2 years of age. With luck controlling the seizures and loving care, she may live to approach the double digits in age but she will not develop much more than she has.

I'm in such a state of shock that while I had an initial wave of emotion at the hospital after the doctors left, I'm now just functioning on autopilot. I've accepted that I'm just going to cry whenever the emotions hit me. On a cognitive level, I know that this changes everything. My whole plan or play book on what it will be like to be Gesina's mom is going to be thrown out the window. Tummy time? "F" that. Worrying about whether or not her legs are perfectly straight for when, 30 years from now, they figure out how to "fix" CP issues with gene therapy? Not my concern. Worrying about Gesina depending too much on the g-tube and that she will have it "forever", who cares. If she hates eating, we use the g-tube. We live for today because we are not promised tomorrow. Spending holidays at the hospital because "she won't remember her first Halloween anyway" doesn't cut it anymore. We are living every moment up to the best of our ability. I don't get to be a mom for very long, so I have to fit as much joy and love into these days as I can. Gesina doesn't get to live long, so she will experience love, joy, beauty, and all that our life has to offer her. She will not spend every waking moment "trying" to regain "normal" abilities. That isn't in the cards so we are not going to force it. We will spend every waking moment enjoying what we have. So every one one note, come December 5th, we will be having the best, most ridiculous tiara-wearing birthday party I can manage in my mental state. We will celebrate me being 40 (on December 3rd) and Gesina being 1 and not because we are sad or in mourning, but because I made it to 40 and she made it to 1. This is really no small feat. I promise you I will cry, which is why I need to have as many friends there as I can. I don't ask for help, but I need it now. I need help keeping my spirits up as I focus on the joy of life while I have Gesina. I'll also need help in the years to come and when I lose Gesina. I'm not sure I'll recover from this but because I'm no longer concerned about the future, I'll not worry about that until it happens.

Send positive thoughts our way as I try to go through the steps of mourning as quickly as possible because my little Gesina monster deserves better. I'll let you all know what my regular neurologist says and you never know, maybe this will just be one of those times a doctor freaked out for no reason. But I'm not going to be counting on that. It doesn't hurt to live each day like it's your last anyway.