Father's Day Number One

For Father’s Day we had breakfast with Brianna’s dad and then went out
to see my dad in Dripping Springs. Hailey was in a great mood and
laughed and giggled almost all day. Somehow Hailey made it to the
Hallmark store to buy her dad some Father’s Day cards. Her
grandmothers gave me a mouse pad with Hailey’s picture on it.

Teething Pains

Hailey is doing better, we think part of the problem is that she has a
cold, she may be experiencing withdrawals from the medication, and she
is teething. This is a lot of things at once for a little baby.

Back at Home

Hailey is home but very irritable. She cried and screamed whenever we
tried to sit or lay her down, she wouldn’t sleep unless you were
holding her. We were worried so we started calling our doctor in
Austin and the other doctors in Houston. We thought she might be
having seizures again and that she might need to go back on her
medication. This is almost the same behavior we saw when we first had
to put Hailey on the medication a couple of months ago. The doctor in
Houston didn’t think that this was seizure related so we waited it
out. Sanna and Elizabeth came and took Hailey for the night. We had
been holding her constantly most of the day so she wouldn’t scream.

We went to look at a private home day care for Hailey. The private
home day care offered many benefits including: fewer children, more
attention, and less (by about 40%) cost. We decided to keep Hailey in
her regular day care because she is more familiar with it.

We're Out of Here

Brianna thinks we will get to go home today. She thinks the doctors
will review her EEG data and send us home without phenobarbital any

What do you know? Brianna is right. Dr. Wheless said we could go home
and Hailey doesn’t need the medication anymore. Yeah! It only took us
about three minutes from the announcement to completely pack Hailey’s

The hotel sent an empty shuttle over to the hospital to pick us up and
take us back to the hotel. Good thing, as Hailey has a lot of
stuff. We filled up the back of the shuttle. While we were waiting a
nice lady came over to comment on how pretty Hailey is and to tell
Sanna about her remedy for cradle cap. Sanna told her that Hailey
didn’t have cradle cap, it was the glue residue from the EEG study.

At the hotel we gave Hailey a bath and packed all of our things so we
could get out of here. Hailey laughed and giggled the whole time. She
seemed to be glad to be out of the hospital. We pushed everything down
the elevator and to the car on bellman’s cart. I think people were
amazed that I could pack it so full of stuff. They looked even more
amazed that I was able to fit it all into the back of Shannon’s

The Waiting Game

Hailey isn’t eating as well as she did while on the phenobarbital. She
is more irritable and gets fussy more often. I think that she is more
alert while off the phenobarbital though. She will look around for me
when she hears my voice or a startling sound. She seems very sleepy
but does not sleep for long periods of time. I think it is do to the
noise and trama of being in this place. She only seems peaceful and
secure when Mommy is holding her.

I thought for a moment that we might get out of here today. Cathy,
Hailey’s nurse, came by to see how much formula we had. We told her we
had six more ready to use bottles and she said she would hold off on
ordering more because she wasn’t sure that we would be staying
longer. Unfortunately, the other nurse came in about an hour later
with a box of formula and said we would be here until Friday. We
haven’t seen the doctors yet, the nurse thought they might be
reviewing the EEG data.

The doctors returned to reveal some of the lab data. The test that
return early have all been normal. We don’t know the results of the
extended tests but they seem to think that they may be normal
too. They will review more of the EEG data this evening or tomorrow
and decide if we should return home on phenobarbital or nothing at

Spinal Tap!

Today brought good and bad news. First the good news, the second MRI
showed that Hailey’s brain development was normal. We can conclude, I
suppose, that Hailey’s seizures are not caused by her immaturity, as
originally suspected.

To the bad news, since the MRI shows nothing abnormal, the doctors
must search for another cause. They have drawn blood, taken a urine
sample, and regretably performed a lumbar tap (a.k.a. spinal tap). The
longest 30 minutes so far has been during the spinal tap. They will be
looking for a chemical imbalance or genetic cause for the seizures. It
will take 3 weeks for the spinal tap results to return.

Hailey has started to show the behavior that she had before she
started taking phenobarbital. She has rolled her eyes back into her
head, had a few muscle flenches with her hand, and began to cry out in
her sleep. Sanna calls the hand muscle flenches “door knocking”
because it looks like she is knocking on a door. Hailey does this only
while sleeping so far.

Day One: MRI, EEG, and Blood Samples

We tried to wake Haley up to eat at 12:00 a.m. Our plan was to stuff
her full of cereal right at 12 so she could sleep until
morning. Hailey had other ideas. She wouldn’t eat anything probably do
to the teething pain. Hailey is very restless, as we all are, she
wakes up about every hour to cry a little before falling back to

We drove to the parking garage about 6:50 a.m. in order to check
Hailey in, we have enough Hailey supplies to last until Friday or
Saturday without reinforcements. Hailey is sleeping so check-in is
going smoothly. This hospital is not on the insurance company’s
network so benefits are paid at the reduced ‘out-of-network’
rate. That is really too bad because this hospital seems to really
know what they are doing. Admission and transfer to the MRI department
went smoothly. We were sent to the prep-and-recovery room before we
had all the consent forms filled out. Less waiting is good.

Hailey woke up for the MRI prescreening exam. At first it went well,
she smiled and looked around while they took her blood pressure and
listened to her chest. Things began to turn ugly when it was time to
sedate her.

The last MRI required general anesthesia, in the form of gas. This
time she will be given a liquid called chloral hydrate. She only
needed 400 mg to fall asleep. I had to hold Haley down by the
shoulders while the MRI nurse squirted the foul-tasting liquid into
Haley’s mouth. Hailey screamed, coughed, and acted like she was
choking during the procedure. That part of the parent’s job is no fun
at all.

This hospital allows the parents to go into the MRI exam room during
the procedure. Hailey and I put on earplugs and went into the cold
room for about an hour of loud magnetic resonance imaging. Hailey
didn’t move during the exam. At one point they had to stop the MRI
machine and reattach the oxygen tube that was going into her nose
because it came loose.

After the exam, we returned to the prep-and-recovery room to
recover. Hailey began to wake up immediately so I was allowed to give
her some Pedialyte. She took all of the 4 ounce bottle as quick as she
could swallow. This signaled the end of the need for recovery so we
were sent up to her room in the appropriately named Jones Pavilion. We
had a choice of wheelchair or crib for the trip up to the room. I
thought it would be easier to push a wheelchair than a crib so I opted
for the wheelchair route. An orderly pushed me up to the fourth floor
while I held Hailey. She was very calm and quiet for the short trip.

Almost as soon as she had arrived in her room the EEG technician
arrived to attached the EEG leads. These twenty or so leads will
remain cemented to Hailey’s head until we are done here, hopefully
before Friday. The leads are covered by a wrapping of gauze so Hailey
looks like a ninja or a mummy.

The room has a CCTV in the rear-left corner, it has pan and tilt
capability but is trained on Hailey’s large metal hospital crib. The
crib features side rails and a roof. Fully closed it more resembles a
circus cage than a baby crib.
Some pictures were taken.

The anesthesia has made Hailey very sleepy and will remain in her
system for the day. We need to wake her every one to two hours to give
her some liquids and keep her hydrated. So far she has been sucking
down the bottles as soon as we wake her.

Our doctor’s fellow (Perkins) has been in to exam Hailey and acquire
the family history. He is a real nice Doctor. He says they will exam
the MRI scans today and have the results for us tomorrow. We have been
told to only give Hailey the nights dosage of phenobarbitol. They will
remove her slowly from the medication in order to prevent withdrawal
as it is addictive.

Hailey’s nurse is great, Brianna likes him for the Scottish accent, I
like him because he has gone out of his way to make sure everything is
going just right. Even though we brought formula and supplies to last
until Friday, we found some of our formula in premixed six ounce
bottles that can be used with disposable nipples so we don’t have to
worry about cleaning our bottles. The hospital’s dietician has been by
to make sure Hailey is receiving the proper food from the
cafeteria. They bring her rice cereal and baby food, today it was
mixed vegetables and applesauce. Too bad we can’t this level of
service from a hospital in the network.

My mom is taking the night shift her at the hospital she has just
arrived and now Brianna and I can go home and get some sleep. Also,
they have just received the blood levels for phenobarbitol and have
told us not to give her any more.

Hailey’s doctor came in to introduce himself and we gave him her
previous MRI. They hope that Hailey will have a seizure so they can
capture it on the EEG and the camera. They are also suggesting doing
additional tests while we are here so they can determine or rule out
anything beside seizures.

Hailey in Houston

We arrived in Houston around 7:30 p.m. We are staying at a Holiday Inn
that is about 2700 feet from the hospital. I estimated using
mapquest. There is a shuttle that runs from the medical complex to
both the Crown Plaza Hotel and the Holiday Inn, the shuttles run on
the hour and half-hour from 6:00 a.m. until 10:00 p.m.

Admission is schedule for Monday morning at 7:00 a.m. She will have an
MRI first thing and will require sedation for the MRI. Hailey can’t
eat after 12:00 a.m. and can’t drink anything after 5:30 a.m. This,
coupled with Hailey’s present cold and congestion the fever that
accompanies it and her teething should make this a fun night.