For her first birthday, I've created the modern version of a scrapbook, a video montage! It's been a long year and this whole journey started when I decided one day that I wanted a baby. So I had one, and she is perfect :-)
https://www.youtube.com/watch?v=Um5qG6SP6NQ&t=2s
I'll post pics from her and my "Survivor" themed birthday party soon :-)
Friday, December 5, 2014
Tuesday, November 18, 2014
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.
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.
Tuesday, November 4, 2014
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!
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!
Saturday, November 1, 2014
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.
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.
Thursday, October 16, 2014
Labels and services
We now have a Physiatrist that I like who seems like a doctor that will help coordinate Gesina's treatments and therapies instead of me feeling I have to coordinate it all. The good news is she is proactive on getting Gesina going with cerebral palsy treatments. We have added baclofen to the medications list (a muscle relaxer) and next week Gesina gets fitted for AFOs for both feet. An AFO is an ankle-foot orthosis, which is a plastic boot fitted specifically to Gesina's feet. The AFO will encourage her feet to grow in appropriately and not let her muscle tightness cause her feet to turn inward or anything that will further complicate her potential for movement. It was so nice to talk to an expert on CP because she filled in so many missing pieces on why Gesina responds to the world in the way she does. I feel that we finally have the doctors we need to fill the team for a little while. The bad news is Gesina finally got the diagnosis/label I've dreaded for a long time. She was diagnosed with "congenital quadriplegia". It's the worse type of CP linked with the worst outcomes, at least statistically. I know every child is different and the severity of her CP hasn't been written down yet but I can't help but have a reaction to that label. I'll come around but it just hurts the soul a bit.
In other news, Gesina has been accepted into the Medicaid program in Wisconsin! Yay to secondary insurance AND it is back dated to April 1, 2014 meaning her April hospital stay and beyond will be covered. Oh and I can now switch from early intervention PT and OT to private therapy that uses a medical model of therapy. This is great because the medical model will allow for more therapy per week AND won't consist of just telling me to work on things with Gesina. I still find that I don't have the time to do all they want me to do and I can't handle the pressure of it. Now the stress can be relieved a bit as now I have therapists for that and some of the stress is off of me. Whew. I did learn that only kids who would be institutionalized if their parents didn't take care of them get approved for the Katie Beckett waiver for medicaid. This is to encourage the families to care for their special needs children and is cheaper than institutionalizing these kids. This has scared the bajeebies out of me. My child is so severely disabled that she would be institutionalized? What happens if I die? So I'm frantically creating a "taking care of Gesina" document, looking into writing a will, and getting some life insurance ASAP. Either way, we are inching towards her first birthday and she's here. I'll keep getting her the doctors, services, and medical devices she needs but with less stress from her OT/PT stuff, I'm going to just focus on being her mom, loving her, and having more fun with her. On that note, here she is trying on daddy's glasses :-)
In other news, Gesina has been accepted into the Medicaid program in Wisconsin! Yay to secondary insurance AND it is back dated to April 1, 2014 meaning her April hospital stay and beyond will be covered. Oh and I can now switch from early intervention PT and OT to private therapy that uses a medical model of therapy. This is great because the medical model will allow for more therapy per week AND won't consist of just telling me to work on things with Gesina. I still find that I don't have the time to do all they want me to do and I can't handle the pressure of it. Now the stress can be relieved a bit as now I have therapists for that and some of the stress is off of me. Whew. I did learn that only kids who would be institutionalized if their parents didn't take care of them get approved for the Katie Beckett waiver for medicaid. This is to encourage the families to care for their special needs children and is cheaper than institutionalizing these kids. This has scared the bajeebies out of me. My child is so severely disabled that she would be institutionalized? What happens if I die? So I'm frantically creating a "taking care of Gesina" document, looking into writing a will, and getting some life insurance ASAP. Either way, we are inching towards her first birthday and she's here. I'll keep getting her the doctors, services, and medical devices she needs but with less stress from her OT/PT stuff, I'm going to just focus on being her mom, loving her, and having more fun with her. On that note, here she is trying on daddy's glasses :-)
Monday, October 6, 2014
10 months and 1 day
Gesina is 10 months and one day old today. She's had a string of good days (with smiles) and I don't want to jinx it, but I think the stomach bug is over! She is a healthy 16 pounds 12 ounces, feels "sturdy" lately with more head control, and is finally TOLERATING TUMMY TIME!!! Yay! It only took 10 months for this and when I say tolerating, I mean some days she'll stay on her tummy for an hour and others 5 minutes. But she is consistently allowing it to happen... lately. She even smiled in reaction to MY voice this morning and not just Adrian's voice or her iPad. The little monster is turning into a daddy's girl but given time, she'll realize her momma's pretty neat too!
The good news is that Gesina does NOT have infantile spasms :-) We are so happy to hear that! The EEG was abnormal showing spikes and at times, rhythmic spikes that are like a precursor to a seizure. But during the whole 72 hours, she did not have a seizure. The neurologist is changing her meds because our goal has always been to prevent seizures, not just treat them when they occur. Her new med is Lamictal and it takes 8 weeks to get her ramped up to the right dose. One side effect we have to watch for is a deadly rash... no big deal, just a deadly rash!!! But if there is one doctor on Team Gesina that I trust implicitly, it's her neurologist. He saved her life when she was born so he's used to these life and death decisions and since he was right last time...
Last week I got a second opinion on the g-tube from a new GI doctor that works out of an office close to my home a few days a week. She also works in the same Milwaukee office as the current GI but comes recommended by Gesina's therapists. She was much better about my concerns and reassured me that Gesina needs the g-tube to ensure her limited energy is spent on developing and not on eating. Honestly, I'm still not convinced she needs it as she has chubby cheeks now and is doing so well with food. BUT, if there is any chance, no matter how small, that getting a g-tube will help her advance her development in this small 3-year window when her brain is its most plastic, then I have to try. She is a slow eater (like her momma, grandma, and great-grandma) so that does take energy. Also, I've read that kids with CP need more calories because they burn so much energy with the constantly tight muscles. Those things added together, I figure I'll get the g-tube and may or may not need it. But at least I can say I've done everything I can to help her develop as best she can. Blah. But that happens, with an overnight hospital stay (and a couch for momma), at the end of the month. Oh, and in a way I get the best of both worlds. The previous GI doc is doing the surgery because he is the first pediatric gastroenterologist in eastern Wisconsin and taught everyone in his office how to do this surgery. So I figure, he's the best. But after the surgery I'm switching to the new GI doctor who works in the same practice but has a better "bedside manner." My relationship with the GI doctor and his/her nutritionist is long term and vital so I have to be able to work with them comfortably. I have a pretty stringent selection system for Team Gesina and seem to be going through doctors relatively quickly ;-)
Next up, we meet the only Physiatrist that works in my town a few days a week. She comes recommended by my therapist (who has 10 kids and a few have CP) but our first appointment is in Milwaukee. I'm hoping this will be it for doctors needed for Team Gesina for a while. I'm looking forward to a break from doctors visits and switching out doctors/therapists! I just hope all these med changes and surgery don't mess up Gesina's streak of good moods and tummy time.
The good news is that Gesina does NOT have infantile spasms :-) We are so happy to hear that! The EEG was abnormal showing spikes and at times, rhythmic spikes that are like a precursor to a seizure. But during the whole 72 hours, she did not have a seizure. The neurologist is changing her meds because our goal has always been to prevent seizures, not just treat them when they occur. Her new med is Lamictal and it takes 8 weeks to get her ramped up to the right dose. One side effect we have to watch for is a deadly rash... no big deal, just a deadly rash!!! But if there is one doctor on Team Gesina that I trust implicitly, it's her neurologist. He saved her life when she was born so he's used to these life and death decisions and since he was right last time...
Last week I got a second opinion on the g-tube from a new GI doctor that works out of an office close to my home a few days a week. She also works in the same Milwaukee office as the current GI but comes recommended by Gesina's therapists. She was much better about my concerns and reassured me that Gesina needs the g-tube to ensure her limited energy is spent on developing and not on eating. Honestly, I'm still not convinced she needs it as she has chubby cheeks now and is doing so well with food. BUT, if there is any chance, no matter how small, that getting a g-tube will help her advance her development in this small 3-year window when her brain is its most plastic, then I have to try. She is a slow eater (like her momma, grandma, and great-grandma) so that does take energy. Also, I've read that kids with CP need more calories because they burn so much energy with the constantly tight muscles. Those things added together, I figure I'll get the g-tube and may or may not need it. But at least I can say I've done everything I can to help her develop as best she can. Blah. But that happens, with an overnight hospital stay (and a couch for momma), at the end of the month. Oh, and in a way I get the best of both worlds. The previous GI doc is doing the surgery because he is the first pediatric gastroenterologist in eastern Wisconsin and taught everyone in his office how to do this surgery. So I figure, he's the best. But after the surgery I'm switching to the new GI doctor who works in the same practice but has a better "bedside manner." My relationship with the GI doctor and his/her nutritionist is long term and vital so I have to be able to work with them comfortably. I have a pretty stringent selection system for Team Gesina and seem to be going through doctors relatively quickly ;-)
Next up, we meet the only Physiatrist that works in my town a few days a week. She comes recommended by my therapist (who has 10 kids and a few have CP) but our first appointment is in Milwaukee. I'm hoping this will be it for doctors needed for Team Gesina for a while. I'm looking forward to a break from doctors visits and switching out doctors/therapists! I just hope all these med changes and surgery don't mess up Gesina's streak of good moods and tummy time.
Thursday, September 25, 2014
Adventures in Extreme Parenting
I've decided to "repackage" special needs parenting. When times are tough and juggling the expectations and needs placed on me becomes overwhelming, I find myself feeling a little like a victim. That mentality spreads and leads to a sense of desperation and sadness. Also, I find that in general, society doesn't really value parenting, especially special needs parenting. On an average day, I don't need looks of pity when I'm with my daughter. She's beautiful and perfect. If I'm lucky, she'll grow up to be happy and really that's all anyone should wish for for their children. What society does value is "extreme" home makeovers, "extreme" Mountain Dew, "extreme" sports, or any other extreme thing that gets you a sponsor and TV-time. The label "extreme" means that you are tougher than the regular Joe and that you got this... whatever it is. To boost my spirits when I get overwhelmed, I've decided that as a special needs mom, I'm engaged in extreme parenting... that's me, I got this and I'm a bad ass :-D It really does change your mentality as extreme athletes aren't victims, they snack on danger and dine on death! So when I see friends starting a food train because their healthy and fully functioning child has a planters wort, I don't get mad. I laugh, but then, I remember that not everyone can handle extreme parenting ;-) Sorry to offend those who don't get the life altering experience of extreme parenting, but let's face it, you have plenty of other benefits!
So what could be overwhelming about raising Gesina lately? Glad you asked as we have had a laughably horrific few weeks. Since I last left you, Gesina had a stomach bug... well that little bugger never really went away. After 10 days of her off-and-on refusing bottles, vomiting nearly everything she ate, not producing stinky or sometimes wet diapers, and generally being unhappy, I called her GI nurse for the second time and she had me take Gesina to the ER in the Children's hospital 45 minutes away from home. After 3 hours in the car (I work an hour away from home in the opposite direction of the ER), we arrived to a packed ER at 6pm on a Tuesday. It's about 75 people deep and everyone thinks their kid has that dreaded flu that is going around. I didn't have time to stop at home so there I am at the ER with a hungry baby with no diapers, no food, and no 9pm meds. By about 8:30 I ask the nurse if it's going to be much longer because I have no meds and live 45 minutes away. She is great and orders a dose of the meds for me and gives me some applesauce to feed my little Gesina monster. I give Gesina her meds and she promptly throws them up all over me as the nurse calls our name. For the first time ever, I get mean mugged for having a crying baby... at the children's hospital... BY THE WOMAN NEXT TO ME WHO TALKED ABOUT JESUS FOR THE LAST HOUR!!! I couldn't believe it. The hospital ordered more meds and Gesina got an IV drip for mild dehydration. We got home at 3am and we were both exhausted.
Wednesday we wake up and Gesina cries a horrific cry I never heard before. I'm terrified and find out it is her "pain cry". I give her a suppository and tylenol but that doesn't really help. I call the pediatrician who thinks its cramps from dehydration but if it gets worse or doesn't get better, take her to the ER. At 9pm Gesina wakes up screaming her pain cry (which really is horrible and just makes me cry) so I give her her meds, then off to the ER we go. Day two of the ER is even more entertaining as there was a car accident involving teenagers. At first, I'm saddened by the thought but then I sit in the waiting room and realize that I have chosen my seat in error. The family behind me has a very lively dad that is dropping an f-bomb for every other word. So I'm trying to feed Gesina and though she can't understand his language, I can imagine she can feel his anger as he is yelling "How's she supposed to know the car was stolen? She wasn't driving..." with some f-bombs thrown in for artistic value. I'm stuck because if I move (he's sitting right behind me) then I look like I'm making some statement and he's very aggressive right now. So I decide that it's 10pm on a Wednesday night at the children's hospital ER, I'm low on sleep so this is just my form of entertainment. Gesina gets an x-ray characterized as "impressive" by the ER nurse due to the "extreme" gas and poo in her system but no blockage. A suppository and tylenol later, I leave the ER at 6am with a screaming baby and a key for a hotel room because Gesina has an appointment that afternoon for a swallow study at the same hospital.
I'm exhausted but we get through it all. The swallow study shows that yup, now that we've lowered her oatmeal intake per ounce of formula (as demanded by the nutritionist), she may be aspirating but we can't tell conclusively. So days in the hospital and a swallow study later, I've learned that there is nothing they can do that I haven't already been doing. That's over $500 to affirm what I already new. Oh, and Gesina is still struggling off-and-on with the stomach bug and we are going on a month of it now.
Last week we had the all clear from her cardiology appointment (yay), the NICU developmental clinic (where they agreed that a g-tube for Gesina is in her best interests), and a neurology appointment. Gesina has had a few odd instances where she startles and then her eyes roll in a circle. These had happened in clusters of about 3 to 5 at a time. Her neurologist and I hope these are just benign reflexes but decided to do a 72-hour video EEG to rule out infantile spasms (do not Google if you can't handle it, these are bad). We are currently on day 2 of the EEG and it's picture day at daycare! Yup, I have the worst luck in the world. So we decided to go with it and make her electrodes just a Halloween costume. When she grows up and see's these pictures, I'm going to tell her I just decided to dress her up as Rob Zombie or George Clinton for Halloween. Fingers crossed that she just thinks her mom has weird taste in music! Here she is in all her scary glory... grrr!
She's rocking that look if I do say so myself. In the meantime, through all the stomach bug, Gesina has gained the expected amount of weight (wtf). I'm going to get the g-tube but I may still fire my GI. He keeps telling me she doesn't have acid reflux because she's on a good dose of Prilosec. I asked about changing brands and he says they are all the same. I asked about the vomiting a bottle everyday and he says that's to be expected. I asked about her slow digestion, he says she's fine. I can't work with him long term so I have to decide if I want to change GI docs before the g-tube insertion or after.
Next up, pediatrician on Friday where I get to explain to her that Gesina's brain atrophy is not a degenerative disease but the result of a one-time brain injury (per neurologist). Hopefully she will help me navigate the GI doctor issue instead of serving a big slice of the truth pie... as she sees it. Then, the g-tube which is an overnight stay. Not gonna lie, putting a whole in my babies stomach when she's gaining weight, getting taller, and seemingly healthy is not going to be easy. BUT, I recognize that she takes in only 3 ounces a day at daycare so they can't feed her and I barely can so I'll do it... hating every minute of it... because that's extreme parenting for ya ;-)
So what could be overwhelming about raising Gesina lately? Glad you asked as we have had a laughably horrific few weeks. Since I last left you, Gesina had a stomach bug... well that little bugger never really went away. After 10 days of her off-and-on refusing bottles, vomiting nearly everything she ate, not producing stinky or sometimes wet diapers, and generally being unhappy, I called her GI nurse for the second time and she had me take Gesina to the ER in the Children's hospital 45 minutes away from home. After 3 hours in the car (I work an hour away from home in the opposite direction of the ER), we arrived to a packed ER at 6pm on a Tuesday. It's about 75 people deep and everyone thinks their kid has that dreaded flu that is going around. I didn't have time to stop at home so there I am at the ER with a hungry baby with no diapers, no food, and no 9pm meds. By about 8:30 I ask the nurse if it's going to be much longer because I have no meds and live 45 minutes away. She is great and orders a dose of the meds for me and gives me some applesauce to feed my little Gesina monster. I give Gesina her meds and she promptly throws them up all over me as the nurse calls our name. For the first time ever, I get mean mugged for having a crying baby... at the children's hospital... BY THE WOMAN NEXT TO ME WHO TALKED ABOUT JESUS FOR THE LAST HOUR!!! I couldn't believe it. The hospital ordered more meds and Gesina got an IV drip for mild dehydration. We got home at 3am and we were both exhausted.
Wednesday we wake up and Gesina cries a horrific cry I never heard before. I'm terrified and find out it is her "pain cry". I give her a suppository and tylenol but that doesn't really help. I call the pediatrician who thinks its cramps from dehydration but if it gets worse or doesn't get better, take her to the ER. At 9pm Gesina wakes up screaming her pain cry (which really is horrible and just makes me cry) so I give her her meds, then off to the ER we go. Day two of the ER is even more entertaining as there was a car accident involving teenagers. At first, I'm saddened by the thought but then I sit in the waiting room and realize that I have chosen my seat in error. The family behind me has a very lively dad that is dropping an f-bomb for every other word. So I'm trying to feed Gesina and though she can't understand his language, I can imagine she can feel his anger as he is yelling "How's she supposed to know the car was stolen? She wasn't driving..." with some f-bombs thrown in for artistic value. I'm stuck because if I move (he's sitting right behind me) then I look like I'm making some statement and he's very aggressive right now. So I decide that it's 10pm on a Wednesday night at the children's hospital ER, I'm low on sleep so this is just my form of entertainment. Gesina gets an x-ray characterized as "impressive" by the ER nurse due to the "extreme" gas and poo in her system but no blockage. A suppository and tylenol later, I leave the ER at 6am with a screaming baby and a key for a hotel room because Gesina has an appointment that afternoon for a swallow study at the same hospital.
I'm exhausted but we get through it all. The swallow study shows that yup, now that we've lowered her oatmeal intake per ounce of formula (as demanded by the nutritionist), she may be aspirating but we can't tell conclusively. So days in the hospital and a swallow study later, I've learned that there is nothing they can do that I haven't already been doing. That's over $500 to affirm what I already new. Oh, and Gesina is still struggling off-and-on with the stomach bug and we are going on a month of it now.
Last week we had the all clear from her cardiology appointment (yay), the NICU developmental clinic (where they agreed that a g-tube for Gesina is in her best interests), and a neurology appointment. Gesina has had a few odd instances where she startles and then her eyes roll in a circle. These had happened in clusters of about 3 to 5 at a time. Her neurologist and I hope these are just benign reflexes but decided to do a 72-hour video EEG to rule out infantile spasms (do not Google if you can't handle it, these are bad). We are currently on day 2 of the EEG and it's picture day at daycare! Yup, I have the worst luck in the world. So we decided to go with it and make her electrodes just a Halloween costume. When she grows up and see's these pictures, I'm going to tell her I just decided to dress her up as Rob Zombie or George Clinton for Halloween. Fingers crossed that she just thinks her mom has weird taste in music! Here she is in all her scary glory... grrr!
She's rocking that look if I do say so myself. In the meantime, through all the stomach bug, Gesina has gained the expected amount of weight (wtf). I'm going to get the g-tube but I may still fire my GI. He keeps telling me she doesn't have acid reflux because she's on a good dose of Prilosec. I asked about changing brands and he says they are all the same. I asked about the vomiting a bottle everyday and he says that's to be expected. I asked about her slow digestion, he says she's fine. I can't work with him long term so I have to decide if I want to change GI docs before the g-tube insertion or after.
Next up, pediatrician on Friday where I get to explain to her that Gesina's brain atrophy is not a degenerative disease but the result of a one-time brain injury (per neurologist). Hopefully she will help me navigate the GI doctor issue instead of serving a big slice of the truth pie... as she sees it. Then, the g-tube which is an overnight stay. Not gonna lie, putting a whole in my babies stomach when she's gaining weight, getting taller, and seemingly healthy is not going to be easy. BUT, I recognize that she takes in only 3 ounces a day at daycare so they can't feed her and I barely can so I'll do it... hating every minute of it... because that's extreme parenting for ya ;-)
Friday, September 5, 2014
39 weeks and 1 day old
My little Gesina monster is 9 months old :-) In fact, she is 39 weeks and 1 day old and having been born at 39 weeks, she has officially been on the "outside" 1 day longer than the time she spent on the "inside" :-D Here she is in all her glory with a smile just for being placed in her activity gym...
The last week has been challenging though. We saw the GI doctor on Thursday and even though Gesina had gained the amount of weight they wanted (and went from 12 percentile to 15th percentile) all the doctor would talk about is the G-tube. He is not interested in her acid reflux issues or managing her meds for that, he is just all for the G-tube. We are going to schedule a swallow study as the thinner liquid seems to make her sound congested after a bottle and we need to find out if she is aspirating. After that, we plan to re-evaluate what we need to do next. Needless to say, I left the appointment frustrated and determined to get a new GI doctor. And then... the stomach virus hit :-(
Grandma and grandpa came to visit and got to enjoy the start of the stomach virus. Starting Saturday Gesina started throwing up 5 or more times a day. I was soaked in it and my floors have never been cleaner due to the constant wiping up of vomit. In fact, I've gone through so many t-shirts that today I'm wearing my last clean t-shirt, my free Chicago Cubs shirt... and was accused of being a Cubs fan. Never! I don't support loveable losers as a general rule. I brought her into the pediatrician's office on Tuesday and have spent the last 4 days feeding her 10 mL of formula every 10 minutes and I'm so exhausted. Between Thursday and Tuesday she had lost half a pound even with my best efforts to keep feeding her the appropriate amount of formula. By now I've completely thrown out the playbook and her ideal amounts of formula per day are forgotten. I'm lucky if she keeps down 6 ounces of formula a day. This morning she kept yogurt down and 3 ounces of formula. We are aiming for feeding her every 2 hours about 3 ounces and we'll see if our luck holds.
So, how does this episode relate to the G-tube? I've talked to her many therapists and even the daycare director who is a speech pathologist this past week. They all said something that really halted my thinking on the G-tube. They all independently said that based on their experience with Gesina and other babies like her, Gesina's development is being impacted by her nutrition and acid reflux. The G-tube can help get those two issues under control so we can focus on her motor development, stretching, etc. This fact crosses a line or standard for me. I refuse to let my daughter's development lag just because her mother is stubborn. I can't will her to eat but I can allow her to be assisted in that endeavor so we can focus on more important things. As Adrian said about this issue, with my original path, I would end up with a teenager who can eat but can't do much else. So I thought long and hard on what my reservations are about the G-tube. I don't care if Gesina is "different" as I've always liked different :-) so what I've concluded is that a G-tube represents dependency and I value independence so much that I will do anything to avoid dependency. Now that I can identify my "logic" I realize how silly it is. My 9 month old is dependent anyway! So what if she is dependent on a G-tube. And if she has to have it for life, which is highly unlikely but you never know, than she can still be independent in caring for her own G-tube. So getting a G-tube doesn't sound so bad anymore and now it's time to think about what it would do for Gesina.
A G-tube will not directly help her acid reflux or vomiting for that matter. It only directly helps her nutrition as whatever amount of nutrition/formula she does not consume during the day I can make up for with the G-tube. Indirectly, the G-tube can help with acid reflux and vomiting. How? With a G-tube I can let her refuse bottles because of acid reflux or vomiting during the day and make up the difference at night. This means less pain and more ability to focus on growing/learning/developing during the day. One thing I know about Gesina is when one thing goes wrong (seizure, acid reflux, vomiting, etc.) her abilities regress. She can quickly revert to her 3 month old self that needs to be held at all times or will scream until you give in. I need her issues that cause her to regress to be managed. I have a neurologist working on controlling her seizures, and if I let him, a GI doctor to work on her tummy issues. Once I get those two factors under control, then I can add a Physiatrist to manage her therapies and likely cerebral palsy.
And there it is... I've finally "said" it. There is a strong likelihood that Gesina has cerebral palsy. I had hoped we would dodge this diagnosis because she doesn't show signs of weakness on one side like most babies with her background. But her high muscle tone hasn't gone away and she likely has a spastic form of cerebral palsy called dystonic quadriparesis. Once I have a Physiatrist on board, I'll be able to truly diagnose her type and the severity of it. The good news is therapy makes a difference in outcomes so I'm on it. The bad news is this is another label I'll have to wrap my head around and embrace. Will she ever be able to run a 5K with me now? We still don't know but worse case? I'll roll her along with me in a wheelchair if I have to! As usual, we're down, but we're not out. She's alive, she's relatively healthy, and she's 9 months old :-)
The last week has been challenging though. We saw the GI doctor on Thursday and even though Gesina had gained the amount of weight they wanted (and went from 12 percentile to 15th percentile) all the doctor would talk about is the G-tube. He is not interested in her acid reflux issues or managing her meds for that, he is just all for the G-tube. We are going to schedule a swallow study as the thinner liquid seems to make her sound congested after a bottle and we need to find out if she is aspirating. After that, we plan to re-evaluate what we need to do next. Needless to say, I left the appointment frustrated and determined to get a new GI doctor. And then... the stomach virus hit :-(
Grandma and grandpa came to visit and got to enjoy the start of the stomach virus. Starting Saturday Gesina started throwing up 5 or more times a day. I was soaked in it and my floors have never been cleaner due to the constant wiping up of vomit. In fact, I've gone through so many t-shirts that today I'm wearing my last clean t-shirt, my free Chicago Cubs shirt... and was accused of being a Cubs fan. Never! I don't support loveable losers as a general rule. I brought her into the pediatrician's office on Tuesday and have spent the last 4 days feeding her 10 mL of formula every 10 minutes and I'm so exhausted. Between Thursday and Tuesday she had lost half a pound even with my best efforts to keep feeding her the appropriate amount of formula. By now I've completely thrown out the playbook and her ideal amounts of formula per day are forgotten. I'm lucky if she keeps down 6 ounces of formula a day. This morning she kept yogurt down and 3 ounces of formula. We are aiming for feeding her every 2 hours about 3 ounces and we'll see if our luck holds.
So, how does this episode relate to the G-tube? I've talked to her many therapists and even the daycare director who is a speech pathologist this past week. They all said something that really halted my thinking on the G-tube. They all independently said that based on their experience with Gesina and other babies like her, Gesina's development is being impacted by her nutrition and acid reflux. The G-tube can help get those two issues under control so we can focus on her motor development, stretching, etc. This fact crosses a line or standard for me. I refuse to let my daughter's development lag just because her mother is stubborn. I can't will her to eat but I can allow her to be assisted in that endeavor so we can focus on more important things. As Adrian said about this issue, with my original path, I would end up with a teenager who can eat but can't do much else. So I thought long and hard on what my reservations are about the G-tube. I don't care if Gesina is "different" as I've always liked different :-) so what I've concluded is that a G-tube represents dependency and I value independence so much that I will do anything to avoid dependency. Now that I can identify my "logic" I realize how silly it is. My 9 month old is dependent anyway! So what if she is dependent on a G-tube. And if she has to have it for life, which is highly unlikely but you never know, than she can still be independent in caring for her own G-tube. So getting a G-tube doesn't sound so bad anymore and now it's time to think about what it would do for Gesina.
A G-tube will not directly help her acid reflux or vomiting for that matter. It only directly helps her nutrition as whatever amount of nutrition/formula she does not consume during the day I can make up for with the G-tube. Indirectly, the G-tube can help with acid reflux and vomiting. How? With a G-tube I can let her refuse bottles because of acid reflux or vomiting during the day and make up the difference at night. This means less pain and more ability to focus on growing/learning/developing during the day. One thing I know about Gesina is when one thing goes wrong (seizure, acid reflux, vomiting, etc.) her abilities regress. She can quickly revert to her 3 month old self that needs to be held at all times or will scream until you give in. I need her issues that cause her to regress to be managed. I have a neurologist working on controlling her seizures, and if I let him, a GI doctor to work on her tummy issues. Once I get those two factors under control, then I can add a Physiatrist to manage her therapies and likely cerebral palsy.
And there it is... I've finally "said" it. There is a strong likelihood that Gesina has cerebral palsy. I had hoped we would dodge this diagnosis because she doesn't show signs of weakness on one side like most babies with her background. But her high muscle tone hasn't gone away and she likely has a spastic form of cerebral palsy called dystonic quadriparesis. Once I have a Physiatrist on board, I'll be able to truly diagnose her type and the severity of it. The good news is therapy makes a difference in outcomes so I'm on it. The bad news is this is another label I'll have to wrap my head around and embrace. Will she ever be able to run a 5K with me now? We still don't know but worse case? I'll roll her along with me in a wheelchair if I have to! As usual, we're down, but we're not out. She's alive, she's relatively healthy, and she's 9 months old :-)
Friday, August 22, 2014
Childcare drama
I've had the worst childcare week ever and sadly, I'm learning that this is just business as usual for working mothers everywhere. First, I find out Monday night that the daycare teacher that promised weeks ago to watch Gesina on Wednesday and Thursday night and on Monday nights during the semester can't watch Gesina... no reason given. Just sorry, can't do it. I'd had this settled weeks ago and every teacher in Gesina's daycare class knew I had work-related obligations starting this week. So I spend Tuesday reeling and trying to find a replacement for the next two nights. Thankfully the front desk employee at my daycare scrambled for me and found someone that can watch Gesina the next two nights. Yay, crisis averted... or so I thought.
Wednesday morning I drop Gesina off at daycare and drive the hour to school for a 6 hour mandatory department meeting. This is a big meeting as there are some very major changes in my job, including who will be my boss in a few months and where my office will be located a year from now. As I drive into the parking lot at work I get a call from daycare, Gesina has a rash and must be picked up immediately. I laugh as I think this has to be a joke. But no, a random child in a completely different room has contracted hand, foot and mouth disease so Gesina must be checked out immediately. This seems very understandable until you add to the story that Gesina has had this rash on her chest, shoulders and back for 3 weeks. In fact, her home health nurse looked at it and told me it was just from the heat and sweating and as her home health nurse was visiting her the next day, I could have her look at it again tomorrow. This doesn't appease the daycare director so I have to turn around and drive the hour back to daycare to pick Gesina up and take her to urgent care. Seventy-five dollars and hours later, I have a note saying Gesina has HEAT RASH and return her to daycare. I drive the hour back to school and walk in the door just as the meeting is adjourned. I haven't been so angry in a really long time. Every parent I've talked to has said this is NORMAL. I can't believe our society is so accepting of such unreliable childcare arrangements. I totally get the public health concerns about sick kids, but to not have a process in place to ensure kids are taken care of in a safe manner and parents can continue to work and financially support said kids is beyond unacceptable. I've found my next research topic on work-family issues...
All that aside, once my emotions calmed down I decided the director of the daycare did not mean me any harm. While she did inconvenience me greatly and really should know the difference between heat rash (on chest and back) and symptoms of hand, foot and mouth which include visible sores on the HAND, FOOT, OR MOUTH, she is just doing her job and has many policies and regulations guiding her decisions. And if she had called me about a symptom I didn't know about, I would have been grateful. So because her heart is in the right place, I decided to be mature and let it go. Blah, adulthood sucks. What I did learn is that in the future, anything I have the home health nurse look at, I'm going to get a note saying what it is and that it is not contagious. I'm also going to start building my emergency backup care ASAP. I may end up with 5 backup babysitters but if I take the train to work, I may not physically be able to pick Gesina up in this situation in the future. I could be stuck in the city with no way to get back home for hours.
On a positive note, Gesina's acid reflux is getting better :-) She has maintained her weight through all of this to remain in the 12th percentile. I do understand the way a G-tube works versus the NG-tube that I had previously experienced. My hesitation with a G-tube is that there is no clear exit strategy for the G-tube. The "Gesina will let us know when she no longer needs it" response doesn't cut it with me. As a psychologist, I know that if she gets dependent on a G-tube (which is essentially the purpose of the G-tube), then she will likely remain on it indefinitely. I won't count on Gesina magically deciding one day that eating is great so she's going to do that now and won't need the tube. Gesina may never be conscious enough to enjoy food. Of course I hope and plan for Gesina to develop into a happy and fully functioning adult, but I also have to accept that she may not get there. That said, if she can currently eat of her own accord, then I'm going to let her. Until her weight declines and she dramatically changes percentiles, I will celebrate her ability to eat and sustain herself. It's also fun to note that Gesina is now in the 75th percentile for height!
Up next is another GI visit where I hope we can continue to work on her nutrition. I'm hoping that at 9 months we can work on adding more real food to her diet and have her start experiencing textures. I'm always a bit sensitive about her missing out on "regular" experiences because of doctors' or therapists fears or lack of faith in her abilities. To that end, she and I went swimming in a pool last week! No crying or whimpering so I think she liked it :-) I need to plan for more adventures in the near future. I'm determined to try new things with Gesina and let her show me what she can and can not yet do. I hope I never get to the point where I assume she can't do something. I have always optimistically believed that obstacles only really exist in your mind. I'd hate to create artificial boundaries for my little fighter as she's already overcome so many obstacles! She really is my inspiration :-)
Wednesday morning I drop Gesina off at daycare and drive the hour to school for a 6 hour mandatory department meeting. This is a big meeting as there are some very major changes in my job, including who will be my boss in a few months and where my office will be located a year from now. As I drive into the parking lot at work I get a call from daycare, Gesina has a rash and must be picked up immediately. I laugh as I think this has to be a joke. But no, a random child in a completely different room has contracted hand, foot and mouth disease so Gesina must be checked out immediately. This seems very understandable until you add to the story that Gesina has had this rash on her chest, shoulders and back for 3 weeks. In fact, her home health nurse looked at it and told me it was just from the heat and sweating and as her home health nurse was visiting her the next day, I could have her look at it again tomorrow. This doesn't appease the daycare director so I have to turn around and drive the hour back to daycare to pick Gesina up and take her to urgent care. Seventy-five dollars and hours later, I have a note saying Gesina has HEAT RASH and return her to daycare. I drive the hour back to school and walk in the door just as the meeting is adjourned. I haven't been so angry in a really long time. Every parent I've talked to has said this is NORMAL. I can't believe our society is so accepting of such unreliable childcare arrangements. I totally get the public health concerns about sick kids, but to not have a process in place to ensure kids are taken care of in a safe manner and parents can continue to work and financially support said kids is beyond unacceptable. I've found my next research topic on work-family issues...
All that aside, once my emotions calmed down I decided the director of the daycare did not mean me any harm. While she did inconvenience me greatly and really should know the difference between heat rash (on chest and back) and symptoms of hand, foot and mouth which include visible sores on the HAND, FOOT, OR MOUTH, she is just doing her job and has many policies and regulations guiding her decisions. And if she had called me about a symptom I didn't know about, I would have been grateful. So because her heart is in the right place, I decided to be mature and let it go. Blah, adulthood sucks. What I did learn is that in the future, anything I have the home health nurse look at, I'm going to get a note saying what it is and that it is not contagious. I'm also going to start building my emergency backup care ASAP. I may end up with 5 backup babysitters but if I take the train to work, I may not physically be able to pick Gesina up in this situation in the future. I could be stuck in the city with no way to get back home for hours.
On a positive note, Gesina's acid reflux is getting better :-) She has maintained her weight through all of this to remain in the 12th percentile. I do understand the way a G-tube works versus the NG-tube that I had previously experienced. My hesitation with a G-tube is that there is no clear exit strategy for the G-tube. The "Gesina will let us know when she no longer needs it" response doesn't cut it with me. As a psychologist, I know that if she gets dependent on a G-tube (which is essentially the purpose of the G-tube), then she will likely remain on it indefinitely. I won't count on Gesina magically deciding one day that eating is great so she's going to do that now and won't need the tube. Gesina may never be conscious enough to enjoy food. Of course I hope and plan for Gesina to develop into a happy and fully functioning adult, but I also have to accept that she may not get there. That said, if she can currently eat of her own accord, then I'm going to let her. Until her weight declines and she dramatically changes percentiles, I will celebrate her ability to eat and sustain herself. It's also fun to note that Gesina is now in the 75th percentile for height!
Up next is another GI visit where I hope we can continue to work on her nutrition. I'm hoping that at 9 months we can work on adding more real food to her diet and have her start experiencing textures. I'm always a bit sensitive about her missing out on "regular" experiences because of doctors' or therapists fears or lack of faith in her abilities. To that end, she and I went swimming in a pool last week! No crying or whimpering so I think she liked it :-) I need to plan for more adventures in the near future. I'm determined to try new things with Gesina and let her show me what she can and can not yet do. I hope I never get to the point where I assume she can't do something. I have always optimistically believed that obstacles only really exist in your mind. I'd hate to create artificial boundaries for my little fighter as she's already overcome so many obstacles! She really is my inspiration :-)
Thursday, August 14, 2014
Non-stop cuddles
So I've been absolutely horrible with keeping up with Gesina's "brushing therapy" and I think it is starting to show. In my defense, she is vomiting up bottles (5 times in one day!!) so I have to keep her upright at nearly all times. This makes brushing difficult. The brushing is supposed to "desensitize" her and allow her to remain calm at any given time. Since I've been lax on it, she startles easily and is adamant about being held at ALL TIMES to feel calm and secure. I don't mind but I did have one of her new daycare teachers complain about it :-( Apparently Gesina's demands don't fit when there are 8 babies in one room and only 2 teachers. I can't believe Gesina is the first baby they've had that likes to be held all of the time but who knows. I've taken her complaint with a grain of salt but if pushed, I may have to let her know that when one doctor is telling you your baby may not make it to her first birthday, then you cuddle her every chance you get and be grateful. But again, I haven't gotten annoyed enough to get grouchy... yet.
Here's a pic of Gesina sitting upright... She is definitely a chip off the old block as I commandeer the lazy boy in my house, and I got that from my dad. Of course, my dad would kick me out of his lazy boy and so far, I haven't done that to Gesina. Though I can absolutely see me yelling at her to bring me something from the fridge in the future ;-)
Next up I am hoping that upping her Prilosec will get the vomiting under control. Even sick, Gesina has gained a pound in one month which is the upper end of what she needed to do. The being sick all of the time has impeded progress on therapy and "inchstones". I'm trying to incorporate sitting up as much as I can to help build up her muscles but tummy time is pretty much impossible. When your baby vomits 3-5 times a day and in large quantities, she ends up sitting up the whole day. The only time she is not sitting up is during clothing and diaper changes. There is no time for her to be horizontal and in fact, she mainly vomits while sitting up (on me of course). Either way, when we get that under control, back to brushing therapy and tummy time.
While we wait, wish me luck; Gesina and I are going on a road trip to see papa play fastpitch at nationals. Three and a half hours in a car with a baby who is only happy being held and vomits quite frequently may do me in. But alas, I'm a problem-solver and I'm going to bring ear plugs :-)
Here's a pic of Gesina sitting upright... She is definitely a chip off the old block as I commandeer the lazy boy in my house, and I got that from my dad. Of course, my dad would kick me out of his lazy boy and so far, I haven't done that to Gesina. Though I can absolutely see me yelling at her to bring me something from the fridge in the future ;-)
Next up I am hoping that upping her Prilosec will get the vomiting under control. Even sick, Gesina has gained a pound in one month which is the upper end of what she needed to do. The being sick all of the time has impeded progress on therapy and "inchstones". I'm trying to incorporate sitting up as much as I can to help build up her muscles but tummy time is pretty much impossible. When your baby vomits 3-5 times a day and in large quantities, she ends up sitting up the whole day. The only time she is not sitting up is during clothing and diaper changes. There is no time for her to be horizontal and in fact, she mainly vomits while sitting up (on me of course). Either way, when we get that under control, back to brushing therapy and tummy time.
While we wait, wish me luck; Gesina and I are going on a road trip to see papa play fastpitch at nationals. Three and a half hours in a car with a baby who is only happy being held and vomits quite frequently may do me in. But alas, I'm a problem-solver and I'm going to bring ear plugs :-)
Friday, August 1, 2014
Downtime with family and fall transitions
Gesina and I have been busy enjoying the few warm days of summer lately and beginning our fall transitions. Normally fall is my favorite season of the year but with such an oddly cold summer, I feel a bit cheated!
Gesina's first transition was to visit a new GI doctor and see a nutritionist. We got the "g-tube" lecture which was annoying. Granted, the doctor didn't receive Gesina's records (of course, that's hundreds of dollars wasted on a general consult because neither my pediatrician or prior GI doctor, both of whom referred me to the new GI, sent over Gesina's records), so the GI doc used the time to tell me what he could do for me... insert a g-tube. I listened like a dutiful mother but was seething inside. My daughter is at the 12% for weight and is not even 8 months old and is wearing 12 month old clothes! I think we are way past that drama. Grrrr. The nutritionist was very helpful though. She was amazed at the diet we had Gesina on because it is very nontraditional. I don't mind it because it WORKED but do agree that due to the low volume of liquid, it is not sustainable in the long-term. So we came up with a plan to get us off the crazy diet and move toward a more sustainable diet. Gesina now takes 20 ounces of formula at 27 calorie per ounce INSTEAD of 12 ounces of formula at 44 calories per ounce each day. We are also lowering the amount of oatmeal from 1 Tbs per ounce to 1 1/2 teaspoon per ounce. The goal is to get it to only 1 Tbs of oatmeal per BOTTLE. So, how is she doing with all this?? AMAZING! She is taking her 20 ounces or more each day and is even showing signs of being hungry :-) Can't wait to tell the GI doc that we won't be needing the g-tube thank you very much! She is vomiting a lot though. I may have the GI doc switch her from Prilosec to something else to see if that helps with the vomiting up of whole bottles.
Gesina has also had some therapy transitions. I finally fired my PT and the new one can't start until next week. We also have a new OT that I've never met because my usual OT is having surgery. Finally, we've added an additional OT through a private company that follows a "medical" model versus the "coaching" model that early intervention (EI) uses. This caused some drama with EI as they claimed it's not best practice to use both... ummm, yeah, right. My private OT has been calling them trying to get their records to ensure they are on the same page. Further, most moms I've talked to online with kids with similar histories as Gesina use both. Finally, my insurance doesn't cover private so I'm not going to stop EI because I can't afford to go all in with private. Sounds like turf wars to me. Either way, I've applied for a secondary insurance through the state that if we qualify for, will pay for the private therapy instead of EI. Fingers crossed on that as it takes about 4-6 MONTHS to find out if we qualify.
Gesina's daycare has had transitions as well. She and all her classmates have graduated to the next room. This means new teachers I've been training and new schedules. I'm transitioning Gesina to 4 days a week in daycare instead of 3... it's killing me :-( I need to do that as I have to start getting back on track at work this fall with more (and new to me) classes to teach, 2 new PhD students to train, 30 new MA students to matriculate, and I'm again heading my local professional society. I'm a sucker for punishment but I've often found that the more facets I have in my life, the more centered I am when things don't go "well" in any given one. In other words, I'm probably a better mother if I have a full life outside of mothering... at least this is what I tell myself!
And finally, Gesina got some serious family love this past weekend at the family reunion! She was held the whole time by every cousin I have and when not at the reunion, my sister and her grandma and grandpa got some snuggles in. In fact, she was so spoiled with family cuddles that she spent the whole first day home demanding to be held. She's incorrigible but as usual, I loved every minute of it. She was also amazing on the ferry ride and just slept, played with my hands, and even drank her bottles (I was seasick by the end but she held that formula down like a champ). Of course while she was at grandma and grandpa's, the "diet" went out the window with her first tastes of mashed potatoes and gravy, ice cream, and chocolate frosting. That's mashed potatoes in the picture below.
She was so good on the ferry and at grandma and grandpa's that we'll have to get a few more visits in before the ferry stops for the year.
Next up, rest and relaxation! We are finally caught up on doctor's visits for a few weeks. Just transitioning to daycare more often, more therapy, and more cuddles until the fall semester begins. I'm going to be horrible at more daycare... I think I'll pick her up early today... Oh how I love that little girl!
Gesina's first transition was to visit a new GI doctor and see a nutritionist. We got the "g-tube" lecture which was annoying. Granted, the doctor didn't receive Gesina's records (of course, that's hundreds of dollars wasted on a general consult because neither my pediatrician or prior GI doctor, both of whom referred me to the new GI, sent over Gesina's records), so the GI doc used the time to tell me what he could do for me... insert a g-tube. I listened like a dutiful mother but was seething inside. My daughter is at the 12% for weight and is not even 8 months old and is wearing 12 month old clothes! I think we are way past that drama. Grrrr. The nutritionist was very helpful though. She was amazed at the diet we had Gesina on because it is very nontraditional. I don't mind it because it WORKED but do agree that due to the low volume of liquid, it is not sustainable in the long-term. So we came up with a plan to get us off the crazy diet and move toward a more sustainable diet. Gesina now takes 20 ounces of formula at 27 calorie per ounce INSTEAD of 12 ounces of formula at 44 calories per ounce each day. We are also lowering the amount of oatmeal from 1 Tbs per ounce to 1 1/2 teaspoon per ounce. The goal is to get it to only 1 Tbs of oatmeal per BOTTLE. So, how is she doing with all this?? AMAZING! She is taking her 20 ounces or more each day and is even showing signs of being hungry :-) Can't wait to tell the GI doc that we won't be needing the g-tube thank you very much! She is vomiting a lot though. I may have the GI doc switch her from Prilosec to something else to see if that helps with the vomiting up of whole bottles.
Gesina has also had some therapy transitions. I finally fired my PT and the new one can't start until next week. We also have a new OT that I've never met because my usual OT is having surgery. Finally, we've added an additional OT through a private company that follows a "medical" model versus the "coaching" model that early intervention (EI) uses. This caused some drama with EI as they claimed it's not best practice to use both... ummm, yeah, right. My private OT has been calling them trying to get their records to ensure they are on the same page. Further, most moms I've talked to online with kids with similar histories as Gesina use both. Finally, my insurance doesn't cover private so I'm not going to stop EI because I can't afford to go all in with private. Sounds like turf wars to me. Either way, I've applied for a secondary insurance through the state that if we qualify for, will pay for the private therapy instead of EI. Fingers crossed on that as it takes about 4-6 MONTHS to find out if we qualify.
Gesina's daycare has had transitions as well. She and all her classmates have graduated to the next room. This means new teachers I've been training and new schedules. I'm transitioning Gesina to 4 days a week in daycare instead of 3... it's killing me :-( I need to do that as I have to start getting back on track at work this fall with more (and new to me) classes to teach, 2 new PhD students to train, 30 new MA students to matriculate, and I'm again heading my local professional society. I'm a sucker for punishment but I've often found that the more facets I have in my life, the more centered I am when things don't go "well" in any given one. In other words, I'm probably a better mother if I have a full life outside of mothering... at least this is what I tell myself!
And finally, Gesina got some serious family love this past weekend at the family reunion! She was held the whole time by every cousin I have and when not at the reunion, my sister and her grandma and grandpa got some snuggles in. In fact, she was so spoiled with family cuddles that she spent the whole first day home demanding to be held. She's incorrigible but as usual, I loved every minute of it. She was also amazing on the ferry ride and just slept, played with my hands, and even drank her bottles (I was seasick by the end but she held that formula down like a champ). Of course while she was at grandma and grandpa's, the "diet" went out the window with her first tastes of mashed potatoes and gravy, ice cream, and chocolate frosting. That's mashed potatoes in the picture below.
She was so good on the ferry and at grandma and grandpa's that we'll have to get a few more visits in before the ferry stops for the year.
Next up, rest and relaxation! We are finally caught up on doctor's visits for a few weeks. Just transitioning to daycare more often, more therapy, and more cuddles until the fall semester begins. I'm going to be horrible at more daycare... I think I'll pick her up early today... Oh how I love that little girl!
Thursday, July 10, 2014
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 :-)
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 :-)
Saturday, June 28, 2014
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.
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.
Monday, June 23, 2014
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.
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.
Thursday, June 5, 2014
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.
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.
Wednesday, May 28, 2014
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.
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.
Friday, May 16, 2014
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!
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!
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