It was a regular Sunday morning at the Catiis residence. The sun was out and the breeze is nice and cool. Everyone was abuzz and busy with their daily morning routine and ready to begin with what started off as a relatively relaxed day, until…
8am Isabella coughed and had a little throw up and then she had this frozen expression on her face right after. Her limbs were limp and not moving. It was a seizure… wait it out, wait it out…
I then put her on her side so she does not choke on her saliva or possible succeeding throw up. Her body did some minor jerking movements. She is still seizing, wait it out, wait it out…
Then her eyes rolled up and her body stiffened. Still seizing wait it out, wait it out…
I held her and kept talking to her until the seizure episode, well, ceases. My son was asking me to make him breakfast, but I cannot. He noticed the look on his sister’s face. I had to tell him and explain to him that his sister is having a seizure. I asked him to wait it out with me and then I can make him breakfast.
Minutes passed (that seemed like hours) but she was still seizing. I believe she will stop for a couple of seconds and another one comes along, looking different than the last one. I called my husband (who left for the store right before everything happened) and instructed him to come home right at that instant. My son was already starving… but I cannot leave Isabella. I told my son to hold his sister’s hand and that we pray together to make the seizures stop. We prayed and prayed over and over… she would not stop seizing. My son even said, “Nanay, I don’t think the prayers are working.” I told him it will. They’d better work.
Eventually my husband got home and I instructed him to take care of Eloi before attending to Isabella. When he became available, he took her from me and that’s when I started breaking down. He kept talking to her and was even playing with her, probably thinking that he can distract her from having the seizure, but they just kept on coming.
I told him that now would be a good time to call 911 and so we did. While I was on the line with the 911 dispatcher, she started shaking… the seizures became grand mal and she started turning purple. That’s when I lost it. I prayed loudly and started giving her away to God. I was telling Isabella that if God is calling her to come home, she has a permission to go with him. I assured her she can go and that we will all be ok.
The paramedics arrived, checked her vitals, then took her to the nearest hospital. My husband rode with them.
I was not in the best state to drive. Good thing that the neighbors were on their way to church and saw the ambulance. They drove me to the hospital. I called friends to let them know what was going on and everyone stepped in and took in roles on who will take care of our son and the house and other things.
When I got to the hospital she was still seizing. The doctors and nurses had a lot of questions. We had to let them in on her litany of complications. We had to explain her syndrome. They do not know her here. We told them that she was under the care of many doctors at Stanford, and then they started making phone calls.
They gave her 2 separate doses of Ativan but she was still seizing. She had on oxygen and almost needed to be intubated, but she, like the trooper that she is, somehow managed to breathe not needing the support of a machine. The attending doctor got a hold of our neurologist and was instructed to administer Diastat. After the longest 2.5 hours of our life, the seizures stopped.
The Stanford team was on their way to pick her up. I went home to pack a hospital bag and made arrangements for work the next day and for Eloi’s school the next day. I wanted to give him a sense of normalcy amidst all the chaos. I didn’t want him to learn about “worry”… no, not yet.
The Stanford team picked her up and ambulanced her all the way to Palo Alto. We were instructed to follow and reassured us that she is in good hands and that we do not need to hurry. My husband and I drove ourselves up there, stopping at a Mcdonald’s to get a quick breakfast and to recollect ourselves.
On the drive up to Palo Alto, I would burst into tears… this time Edgar joined me.
When we got to the hospital, we found her in the Pediatric Intensive Care Unit. A Neurologist was already there at bedside attending to her. Isabella was knocked out and she had a fever. We spoke to the doctors recollecting the events of that morning. We were trying to figure out what might have caused the seizure. We told them that the day before she was baptized and we had a party and she skipped her afternoon naps because she was interested with everyone. She didn’t get to really fall asleep until 11 that night, and from 1 am onwards would cry and fuss every hour. The seizure trigger could have been that she was over stimulated from the day before, tired from the day before or she could have caught something and have an infection that may have caused the seizure, hence the fever, or she could just have a fever right after the seizure and the trigger is random. A blood and urine culture was ordered to check for infections.
The result of the culture is negative.
So what triggered the seizures? We had to ask the neuro doctors, and their response was that since seizures is a likelihood with Isabella’s syndrome, they think that it was just the time for her to have the seizures.
Will this be a regular part of our lives? 911 calls, her losing oxygen, ambulances, and emergency rooms? Not necessarily.She will be getting medication to control the seizures and she will be starting with a low dose of 0.5mls, and if she has a seizure for more than 10 minutes we can give her Diastat.
Will the medications control her staring seizures and the occasional brief blinking-jerking thing she does? No, it will not control the baseline, and reminded up that these small seizures were benign.
We left the hospital the following day, just in time for our renal appointment for that day at the clinic across the street from the hospital.
We went home with the good news that meds controlled her seizures within 24 hours and that her renal function is close to normal.
We pray that there will be no more seizure shenanigans.
Saturday, November 20, 2010
Wednesday, November 10, 2010
The 11th Month
Current Stats:
Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.
Feeding
The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.
Seizure Scare
We had the biggest scare of our life 2 days before her 11 month bday. She had her first big seizure. It all started with a staring/freezing episode then a small throw up, then staring and some jerking and some eye rolling. We know she has seizures but since the neurologist said that they were benign we were just waiting-out the seizure episode. However, 30 minutes later of staying frozen with occasional jerking and her eyes just rolled up and being unresponsive, we figured it was time to contact 911. While waiting for the paramedics to arrive she started to do tonic clonic movements and some stiffness. She also turned purple. She was rushed to the emergency room, intubated, and was given three separate doses of Ativan, but it was not enough to make the seizures stop. Eventually they got a hold of our neuro and the ER team was instructed to administer Diastat. Then eventually the seizing stopped. Her whole seizure episode lasted for about an hour and a half. The Stanford team came to get her and she stayed in the PICU overnight. She spiked a fever after the seizure and doctors needed to know if the reason she had a seizure was because she has an infection which also explains the fever. So they ordered a blood and urine culture but the results were a negative. So doctors said the fever was caused by the seizure and the cause of the seizure is unknown. Neurologist thinks it was just the time for her to have the epileptic seizures that is not uncommon to children with WHS. The doctor ordered daily doses of Keppra to control seizures. We have yet to see how the medicine affects her, but so far, Isabella seems to be back to her usual self, except that she seems to have lost the muscle strength to sit with minimal support from an adult. What is really important for us right now is to have the meds control the seizures and for us to NOT have to go through this big seizure scare ever again.
Renal Report
She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?
She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.
She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.
She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.
We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.
Upcoming Medical Stuff
Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.
Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.
Feeding
The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.
Seizure Scare
Renal Report
Kidney doctor says that her kidneys are close to normal functioning. We can try to give her a little bit of food rich in potassium such as potatoes, squash, avocados, and bananas. Another VCUG to check if her kidney reflux has resolved itself will be done around May of next year. Creatinine and potassium levels in her blood read normal.
She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?
She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.
She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.
She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.
We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.
Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.
To read about Isabella's previous developmental update, click here
Tuesday, October 26, 2010
How Can I Help It?
How can I not help looking at other girls and thinking, “I wanted a daughter to grow up into something like that”?
How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”
How can I not help but look at younger babies and see how developmentally far ahead they are?
How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”
How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.
How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?
How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?
How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?
How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?
How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.
How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?
How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.
How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.
How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?
How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?
How can I not but help to try and work through all this uncertainty and the not knowing what to do?
How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?
How can I not but help to shed some tears as I type this down?
How can I not but have to force to help myself every time I hit walls of moments like this?
How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.
And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?
How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.
How can I not help but to give in sometimes to the many complex emotions, such as right now, just to feel that cathartic release.
How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”
How can I not help but look at younger babies and see how developmentally far ahead they are?
How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”
How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.
How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?
How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?
How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?
How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?
How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.
How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?
How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.
How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.
How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?
How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?
How can I not but help to try and work through all this uncertainty and the not knowing what to do?
How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?
How can I not but help to shed some tears as I type this down?
How can I not but have to force to help myself every time I hit walls of moments like this?
How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.
And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?
How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.
How can I not help but to give in sometimes to the many complex emotions, such as right now, just to feel that cathartic release.
Saturday, October 16, 2010
A Temporary Loss of Perspective
I just realized that my Isabella stopped playing with sounds… she does not coo, or babble as much as she did. I realized that she hardly really babbled or cooed. She would however make sounds that seem like she is calling for us. But that was mostly it.
A lot of children with WHS are nonverbal…. So if my Isabella will grow up non verbal, it should not really surprise me. However, when I spoke to a friend of mine who is a speech pathologist regarding this babbling issues I have been having, she adamantly had to confirm my strong suspicions that my daughter would most likely fall into the non verbal category of WHS children. And as much as I knew about this possibility, I felt a pinch in my heart.
So, this weekend I found myself in a place where I was praying fervently…. In that moment of sincere and deep prayer, I was bargaining with God. I was trying to cut him a deal to perform a miracle and make the “speech happen”. Then I started crying.
I cried not because of pain…. I cried because for the first time, I understand the meaning and depth of the word “desperation”. I was in a very desperate place. I came to understand that “desperation” can so easily be mistaken for hope, however the underlying emotion between hope and desperation are entirely different emotions.
Forlorn hope aka desperation is losing focus of the good promises that lie in the future…. Positive hope is keeping things in perspective and having a happy and contented disposition… it is more than just optimism, it is believing, it is having faith, it is taking in that unknown future with a trust that is enveloped with spiritual grace.
I then stopped my bargaining process with the Lord. I came to realize that there is no need to bargain for anything. I get what I get and I should be content.
Why pray for a miracle?
My daughter is not sick.
A trade or bargain will not change things.
I don’t think that it could ever be possible to wake up one day and find my Isabella “normal”.
Nothing is wrong with having a daughter like mine.
Nothing is wrong with Isabella.
She is fine and she is happy and she will be who she is going to be and she will be okay.
Everything will be okay.
Why pray for a miracle?
Have I not completely accepted her?
I should by now.
I should have, by now, accepted my lot wholeheartedly.
Next time I find myself in a place of desperation… the miracle I would be praying for is for my complete conversion to acceptance.
I so desperately need that kind of miracle in times that I lose sight of positive hope.
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