Wednesday, May 16, 2007
Tuesday, May 15, 2007
Evelyn's Story: The Longest Week
We were scheduled for induction at 39 weeks, mainly for delivery to occur under a controlled setting, with all medical personnel "all present and accounted for". So, on Sunday, we went out for "the last supper", and on Monday, 07-May-2007, we went in to Banner Good Samaritan Hospital for the induction. And thus began The Longest Week.
Monday 07-May-2007
We were scheduled for induction to begin around 1pm Monday, so we arrived at 11am. After the typical check-in hijinks, we proceeded to the room and "began". This included an initial 12-hour treatment as a pre-cursor to inducing contractions. After 12 hours (1am Tuesday), it was determined things had not progressed quite as much as desired, so another treatment was initiated.
Tuesday 08-May-2007
Around 10am Tuesday, it was decided to press on with inducing labor. By early afternoon, Kim was having increasingly-strong contractions. Around 6pm, though, the game quickly changed: All of a sudden, our nurse - who was otherwise very polite - briskly walked into our room and curtly requested Kim to "roll over", saying something about "the baby's heart rate was too low". The fetal heart rate monitor (cardiotocography) was registering about 83 beats-per-minute (bpm), where her normal range was 140-150 bpm.
As the nurse was requesting Kim to roll to her other side (this "switching sides" an apparent initial remedy for a low heart rate), around 4 more nurses appeared, seemingly out of thin air. One of them was jabbing Kim in the arm with a needle (some manner of tocolytic), plunging it in before warning "Big stick!", and the others were bustling about, when all of a sudden, they were off - running Kim out of the room and down the hall in the bed. The continued at a break-neck clip, careening into a temporary wall, and arriving at the OR. At this point, we were told Kim would be put under general anesthesia, and an emergency C-section would be performed - "Now."
Luckily, when the heart rate monitor was put back on in the OR, Evelyn's heart rate was back up to the normal range - likely owing to Kim's adrenaline! In any case, they called off the emergency C-section, but transferred us to a room nearer the OR, and also placed an epidural for Kim, so that in the event an emergency procedure was required, general anesthesia would not be necessary. The rest of the night was (mercifully) uneventful, with all other treatments stopped until the next day.
Wednesday 09-May-2007
Mid-morning, labor induction began again. Things seemed to be progressing reasonably, though Kim was arguably more comfortable with the epidural. However, over the course of the day, there were five more instances of heart rate decelerations. None were quite as drastic as the Tuesday episode - though one or two was close. By late Wednesday, the doctors felt that continuing through labor would simply not be advisable, and to continue with a planned C-section, rather than be forced into an emergency C-section.
Thereby, at 9:34pm Wednesday night - Evelyn was born! She had Apgar scores of 8 and 9, but after a few minutes, was still taken to the NICU as a precaution. Daniel spent the next few hours with Evelyn in the NICU as Kim was taken to the recovery room, and at some time in the wee hours of the morning, Kim was deemed "recovered enough" to be wheeled down to see Evelyn.
Thursday 10-May-2007
Thursday was an overall quiet day, with one minor exception: the neurosurgeon we had consulted with pre-delivery wanted to have another MRI that afternoon to get a better and more current look at the cysts in Evelyn's brain, to assure there wasn't too much pressure building up, or similar issues. We - and a nurse - did note some possible "seizure-like activity" on an occasion or two.
Beyond that, it was a day full of resting (as best that can be done in a hospital), picture-taking, and getting to know Evelyn. We were advised that an EEG was planned for first thing in the morning Friday, as a partil off-shoot of the "seizure-like activity", and that the neurosurgeon would be reviewing the MRI results - but nothing else "big" planned.
Friday 11-May-2007
After night of little and intermittent sleep - we just had to keep going to the NICU to see and feed Evelyn all night :-) - we went back down to see her around 7:45am, right before her 8:00am EEG appointment. We then found out that the neurosurgeon had reviewed Evelyn's MRI earlier that morning, and wanted to do surgery - at 1pm that afternoon!
Needless to say - that hit us like a ton of bricks! Additionally, it kicked off a very fast flurry of activity... Evelyn would be transferred to Phoenix Children's Hospital (PCH) for the surgery. Thereby, we hustled back up to Kim's hospital room, as with the assistance of the NICU doctors and Kim's excellent recovery, Kim's doctors had agreed to an early discharge so Kim could be at PCH for the surgery.
The surgery would be to perform an endoscopic fenestration of some of the cysts in Evelyn's brain; essentially "popping them" to allow them to drain or deflate. This, it was theorized, would take the pressure off other parts of her brain and hopefully "unclog the drain" of her ventricular system such that it could properly drain and flow. It was hoped this would mitigate any future need for a shunt.
First, though, the EEG was performed, and showed no technical seizures, though the results were somewhat questionable.
From there, Evelyn was taken into surgery. As one might imagine, it was incredibly difficult to see your not-even-2-day-old taken away, put under general anesthesia, and have brain surgery. However, a testament to the fighter that she is, Evelyn came through just fine, coming off the ventilator sooner than expected.
The surgery was targeting popping the cysts on the right, middle, and left. The surgeon went in on the right, as the cysts were largest and the most pressure appeared to be there. In the end, he was able to get to the right side and middle, but did not feel comfortable progressing on through to the left. In any case, he felt this was good progress, and wanted to await in MRI to see how things progressed.
We (Kim & Daniel) went home for the first time since Monday. As one might also imagine - it was also incredibly difficult to "go home without the baby", as it's just not the image you have in your head of returning home from the hospital - without the baby. However, it was likely a bit of a blessing in disguise, as we both got some very-much needed rest, which does wonders for your outlook after 4 days of living at a hospital with just a few hours of "sleep" per night.
Saturday 12-May-2007
Saturday was the start several long days of driving back and forth between PCH and our house (a 45 minute to hour drive one-way). Otherwise, though, it was a fairly (mercifully) slow day, with the exception of an MRI (deja vu?) to see the results of the surgery. Initial results "looked good" - no peripheral damage and the cysts appeared to be draining - but the "full interpretation" wouldn't be until Monday. Daniel's mom arrived around mid-day Saturday to stay for the week. The neurologist did come by to visit, and we discussed the EEG some. He did refrain from officially classifying the tremors we had occasionally seen - a bit more so after surgery - as "seizures", but proceeded to prescribe phenobarbital, as this "seizure-like activity" had been noted by several of the nurses.
Other than that, the day was largely spent quietly with Evelyn in the NICU.
Sunday 13-May-2007
Mother's Day! Sunday was also thankfully quiet, and as it was Mother's Day, the hospital allowed everyone to go outside if it was possible. As Evelyn had some mild jaundice, the nurses actually suggested it, so we took them up on their offer - and the chance to show Evelyn off in her pretty pink sunglasses!
Monday 14-May-2007
Evelyn had an eye-test schedule mid-morning or so. We had been fairly clamoring for this test, knowing that it would confirm or (hopefully) deny Aicardi as a possibility.
The short of it is, the opthalmologist noted lacunae of the retina and coloboma of the optic nerve - both very characteristic of Aicardi Syndrome, particularly when coupled with the agenesis of the corpus callosum, cysts, and (as yet unofficial) seizures. The doctor's further conclusion was the Evelyn would likely be mostly blind, if not completely so.
Needless to say, this was upsetting, to say the least. The neurologist came by again later that day, and confirmed the diagnosis.
In short, it really felt like something of a nightmare coming true - seeing this "remote impossibility" coming to fruition as reality.
The one bright-spot coming out of Monday was that the neurosurgeon did review the results of the MRI and was quite pleased with the progress at that point, ruling out another procedure for at least a week or two.
Tuesday 15-May-2007
Finally, the day we'd been waiting for - Tuesday Evelyn was discharged! Most of the day was filled with preparations for that, including attending an infant CPR class, as Evelyn was put on an apnea monitor as a precautionary measure, from both her general condition, and the medication (a side effect of phenobarbital being drowsiness). Around 2:30pm or so, we finally left PCH, and went home. It was a great feeling, just to get Evelyn home.
Monday 07-May-2007
We were scheduled for induction to begin around 1pm Monday, so we arrived at 11am. After the typical check-in hijinks, we proceeded to the room and "began". This included an initial 12-hour treatment as a pre-cursor to inducing contractions. After 12 hours (1am Tuesday), it was determined things had not progressed quite as much as desired, so another treatment was initiated.
Tuesday 08-May-2007
Around 10am Tuesday, it was decided to press on with inducing labor. By early afternoon, Kim was having increasingly-strong contractions. Around 6pm, though, the game quickly changed: All of a sudden, our nurse - who was otherwise very polite - briskly walked into our room and curtly requested Kim to "roll over", saying something about "the baby's heart rate was too low". The fetal heart rate monitor (cardiotocography) was registering about 83 beats-per-minute (bpm), where her normal range was 140-150 bpm.
As the nurse was requesting Kim to roll to her other side (this "switching sides" an apparent initial remedy for a low heart rate), around 4 more nurses appeared, seemingly out of thin air. One of them was jabbing Kim in the arm with a needle (some manner of tocolytic), plunging it in before warning "Big stick!", and the others were bustling about, when all of a sudden, they were off - running Kim out of the room and down the hall in the bed. The continued at a break-neck clip, careening into a temporary wall, and arriving at the OR. At this point, we were told Kim would be put under general anesthesia, and an emergency C-section would be performed - "Now."
Luckily, when the heart rate monitor was put back on in the OR, Evelyn's heart rate was back up to the normal range - likely owing to Kim's adrenaline! In any case, they called off the emergency C-section, but transferred us to a room nearer the OR, and also placed an epidural for Kim, so that in the event an emergency procedure was required, general anesthesia would not be necessary. The rest of the night was (mercifully) uneventful, with all other treatments stopped until the next day.
Wednesday 09-May-2007
Mid-morning, labor induction began again. Things seemed to be progressing reasonably, though Kim was arguably more comfortable with the epidural. However, over the course of the day, there were five more instances of heart rate decelerations. None were quite as drastic as the Tuesday episode - though one or two was close. By late Wednesday, the doctors felt that continuing through labor would simply not be advisable, and to continue with a planned C-section, rather than be forced into an emergency C-section.
Thereby, at 9:34pm Wednesday night - Evelyn was born! She had Apgar scores of 8 and 9, but after a few minutes, was still taken to the NICU as a precaution. Daniel spent the next few hours with Evelyn in the NICU as Kim was taken to the recovery room, and at some time in the wee hours of the morning, Kim was deemed "recovered enough" to be wheeled down to see Evelyn.
Thursday 10-May-2007
Thursday was an overall quiet day, with one minor exception: the neurosurgeon we had consulted with pre-delivery wanted to have another MRI that afternoon to get a better and more current look at the cysts in Evelyn's brain, to assure there wasn't too much pressure building up, or similar issues. We - and a nurse - did note some possible "seizure-like activity" on an occasion or two.
Beyond that, it was a day full of resting (as best that can be done in a hospital), picture-taking, and getting to know Evelyn. We were advised that an EEG was planned for first thing in the morning Friday, as a partil off-shoot of the "seizure-like activity", and that the neurosurgeon would be reviewing the MRI results - but nothing else "big" planned.
Friday 11-May-2007
After night of little and intermittent sleep - we just had to keep going to the NICU to see and feed Evelyn all night :-) - we went back down to see her around 7:45am, right before her 8:00am EEG appointment. We then found out that the neurosurgeon had reviewed Evelyn's MRI earlier that morning, and wanted to do surgery - at 1pm that afternoon!
Needless to say - that hit us like a ton of bricks! Additionally, it kicked off a very fast flurry of activity... Evelyn would be transferred to Phoenix Children's Hospital (PCH) for the surgery. Thereby, we hustled back up to Kim's hospital room, as with the assistance of the NICU doctors and Kim's excellent recovery, Kim's doctors had agreed to an early discharge so Kim could be at PCH for the surgery.
The surgery would be to perform an endoscopic fenestration of some of the cysts in Evelyn's brain; essentially "popping them" to allow them to drain or deflate. This, it was theorized, would take the pressure off other parts of her brain and hopefully "unclog the drain" of her ventricular system such that it could properly drain and flow. It was hoped this would mitigate any future need for a shunt.
First, though, the EEG was performed, and showed no technical seizures, though the results were somewhat questionable.
From there, Evelyn was taken into surgery. As one might imagine, it was incredibly difficult to see your not-even-2-day-old taken away, put under general anesthesia, and have brain surgery. However, a testament to the fighter that she is, Evelyn came through just fine, coming off the ventilator sooner than expected.
The surgery was targeting popping the cysts on the right, middle, and left. The surgeon went in on the right, as the cysts were largest and the most pressure appeared to be there. In the end, he was able to get to the right side and middle, but did not feel comfortable progressing on through to the left. In any case, he felt this was good progress, and wanted to await in MRI to see how things progressed.
We (Kim & Daniel) went home for the first time since Monday. As one might also imagine - it was also incredibly difficult to "go home without the baby", as it's just not the image you have in your head of returning home from the hospital - without the baby. However, it was likely a bit of a blessing in disguise, as we both got some very-much needed rest, which does wonders for your outlook after 4 days of living at a hospital with just a few hours of "sleep" per night.
Saturday 12-May-2007
Saturday was the start several long days of driving back and forth between PCH and our house (a 45 minute to hour drive one-way). Otherwise, though, it was a fairly (mercifully) slow day, with the exception of an MRI (deja vu?) to see the results of the surgery. Initial results "looked good" - no peripheral damage and the cysts appeared to be draining - but the "full interpretation" wouldn't be until Monday. Daniel's mom arrived around mid-day Saturday to stay for the week. The neurologist did come by to visit, and we discussed the EEG some. He did refrain from officially classifying the tremors we had occasionally seen - a bit more so after surgery - as "seizures", but proceeded to prescribe phenobarbital, as this "seizure-like activity" had been noted by several of the nurses.
Other than that, the day was largely spent quietly with Evelyn in the NICU.
Sunday 13-May-2007
Mother's Day! Sunday was also thankfully quiet, and as it was Mother's Day, the hospital allowed everyone to go outside if it was possible. As Evelyn had some mild jaundice, the nurses actually suggested it, so we took them up on their offer - and the chance to show Evelyn off in her pretty pink sunglasses!
Monday 14-May-2007
Evelyn had an eye-test schedule mid-morning or so. We had been fairly clamoring for this test, knowing that it would confirm or (hopefully) deny Aicardi as a possibility.
The short of it is, the opthalmologist noted lacunae of the retina and coloboma of the optic nerve - both very characteristic of Aicardi Syndrome, particularly when coupled with the agenesis of the corpus callosum, cysts, and (as yet unofficial) seizures. The doctor's further conclusion was the Evelyn would likely be mostly blind, if not completely so.
Needless to say, this was upsetting, to say the least. The neurologist came by again later that day, and confirmed the diagnosis.
In short, it really felt like something of a nightmare coming true - seeing this "remote impossibility" coming to fruition as reality.
The one bright-spot coming out of Monday was that the neurosurgeon did review the results of the MRI and was quite pleased with the progress at that point, ruling out another procedure for at least a week or two.
Tuesday 15-May-2007
Finally, the day we'd been waiting for - Tuesday Evelyn was discharged! Most of the day was filled with preparations for that, including attending an infant CPR class, as Evelyn was put on an apnea monitor as a precautionary measure, from both her general condition, and the medication (a side effect of phenobarbital being drowsiness). Around 2:30pm or so, we finally left PCH, and went home. It was a great feeling, just to get Evelyn home.
Wednesday, May 9, 2007
Evelyn's Story: In utero
All in all, Kim's pregnancy with Evelyn was a textbook one, until week 32. Even thereafter, there were no remarkable health issues, as far as baby or mom were concerned - just the "normal pregnancy stuff".
Around week 20, when we were in for a routine ultrasound, some choroid plexus cysts were noted. However, these were described as quite common during brain formation, typically disappearing by week 32.
At week 32 (20-Mar-2007), the world began turning upside down. We returned for an ultrasound primarily to check the aforementioned choroid plexus cysts, and received the results as "not normal" (a proclamation which will likely ring in our ears for a long, long time). We were referred immediately to another practice specializing in higher-risk pregnancies - including a nationally-renowned fetal ultrasonographer - and set up for an MRI the next day.
The MRI results were debated for a good while between the neuroradiologist and the ultrasonographer, but they finally came to a unified conclusion: complete agenesis of the corpus callosum (ACC), and a variety of ventricular cysts. Needless to say, we immediately hopped online, and read up on what all that could mean and what associated conditions could include. In particular, Daniel stumbled onto a frightening - and incredibly rare - syndrome that included ACC and cysts as symptoms - "Aicardi Syndrome". He spent several days researching it and reading stories of other families, managing to get himself properly worried, as there were a number of families who had stories that were beginning to sound eerily similar to ours.
However, though we continued to have bi-weekly check-ups due to the "uncertain issues", the worry slowly managed to give way to excitement and preparation for Miss Evelyn!
Around week 20, when we were in for a routine ultrasound, some choroid plexus cysts were noted. However, these were described as quite common during brain formation, typically disappearing by week 32.
At week 32 (20-Mar-2007), the world began turning upside down. We returned for an ultrasound primarily to check the aforementioned choroid plexus cysts, and received the results as "not normal" (a proclamation which will likely ring in our ears for a long, long time). We were referred immediately to another practice specializing in higher-risk pregnancies - including a nationally-renowned fetal ultrasonographer - and set up for an MRI the next day.
The MRI results were debated for a good while between the neuroradiologist and the ultrasonographer, but they finally came to a unified conclusion: complete agenesis of the corpus callosum (ACC), and a variety of ventricular cysts. Needless to say, we immediately hopped online, and read up on what all that could mean and what associated conditions could include. In particular, Daniel stumbled onto a frightening - and incredibly rare - syndrome that included ACC and cysts as symptoms - "Aicardi Syndrome". He spent several days researching it and reading stories of other families, managing to get himself properly worried, as there were a number of families who had stories that were beginning to sound eerily similar to ours.
However, though we continued to have bi-weekly check-ups due to the "uncertain issues", the worry slowly managed to give way to excitement and preparation for Miss Evelyn!
Wednesday, May 2, 2007
Evelyn's Story
One of the primary instigators for this website was trying to find a way to succinctly and accurately relate to people everything that's gone on with Evelyn, particularly anyone that is "recently" finding out.
For readability and understanding, we'll tackle this in 3 sections:
For readability and understanding, we'll tackle this in 3 sections:
- In utero - Events during Kim's pregnancy with Evelyn
- Longest Week - The "story of Evelyn's birth" and initial procedures and diagnoses that followed
- Ongoing (Nov 2007) - Events & information since going home after birth
Tuesday, May 1, 2007
welcome & about
news
As always, the most recent info can be found on right here on the Evelyn's Army website. However, from time to time, we'll send an e-mail update out - let us know if you'd like to be added to that list.
welcome
Hello, and welcome to Evelyn's Army. If you're here, you probably know, know of, or know about Evelyn. If not - check out evelyn's story.
This site is created to have a central place to post updated information, to keep the "army" informed, and to just have a spot for Evelyn on the web. We'll try to put more recent news or thought "as it happens" on the blog / news. Occasionally, we'll try to update the rest of the site with more "composed" thoughts or updates.
why an army?
Why "Evelyn's Army"? That all started as events were unfolding rapidly both before and after Evelyn's birth - before too long, we were hearing from people on all sides of the globe and many that we didn't even know.
One definition for "army" is"a large number of people united for some specific purpose", and that seemed to kind of fit the bill.
As noted, in many cases, "the army" extends to people that have never even met Evelyn or her parents, in which case we're especially flattered that you're here.
about
This site is largely maintained by Evelyn's dad, Daniel. Daniel's the alpha-geek of the family, but you might see Evelyn's mom, Kim, on here occasionally.
As always, the most recent info can be found on right here on the Evelyn's Army website. However, from time to time, we'll send an e-mail update out - let us know if you'd like to be added to that list.
welcome
Hello, and welcome to Evelyn's Army. If you're here, you probably know, know of, or know about Evelyn. If not - check out evelyn's story.
This site is created to have a central place to post updated information, to keep the "army" informed, and to just have a spot for Evelyn on the web. We'll try to put more recent news or thought "as it happens" on the blog / news. Occasionally, we'll try to update the rest of the site with more "composed" thoughts or updates.
why an army?
Why "Evelyn's Army"? That all started as events were unfolding rapidly both before and after Evelyn's birth - before too long, we were hearing from people on all sides of the globe and many that we didn't even know.
One definition for "army" is"a large number of people united for some specific purpose", and that seemed to kind of fit the bill.
As noted, in many cases, "the army" extends to people that have never even met Evelyn or her parents, in which case we're especially flattered that you're here.
about
This site is largely maintained by Evelyn's dad, Daniel. Daniel's the alpha-geek of the family, but you might see Evelyn's mom, Kim, on here occasionally.
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