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.