April 16, 2016 - Hell Week
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| Annalise's 3 Month Photos |
One week ago, my life was pretty perfect. I don’t say that because my life was flipped upside down and hasn’t been righted. I say that because I often thought it. I would often thank God for the life that I had and I wondered sometimes how I had been so lucky. Last Saturday began like most other weekend days. My son, Elliot, has a semi-new interest in dinosaurs. He is two and a half years old. He has a baby sister, Annalise, who is just over three months old. Though Elliot adores his baby sister, we try to get out and do things he likes so that he doesn’t feel jealous of his sister and all of the attention we have to give a three month old. So on this Saturday, we were going on a family outing to a dinosaur exhibit. We got to see animatronic dinosaurs. We paid way too much for our tickets so that our kiddo could get up close and personal to a T-Rex. We even bought the souvenir photo with a T-Rex. I had no idea that the silly photo we took would be the last family photo taken B.D. (before diagnosis).
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| The Dinosaur Exhibit |
I went to buy diapers after the event. I left the kids at
home with their dad, Sean, so that I could come back quickly and relax. When I
got home, Sean told me that our daughter had done something very strange. He
said that she was moving her eyes, arms and legs up and down in unison. He was
shaken up, but he didn’t think she needed to go to the emergency room. After
some coaxing from my mom and under the direction of our pediatrician, we
decided to take Annalise to the emergency room at Riley Children’s Hospital. We
thought they would tell us that we were overreacting and to take our sweet girl
home.
We
described our symptoms to two of the doctors on call that evening. Neither was convinced
that she had had a seizure. They said that some parts of what my husband described
sounded like a seizure, but other parts were not consistent with having had a
seizure. They recommended we have a CT scan. We wanted to do it to rule out any
problems. I knew the results would be normal and was assured by the technician
that they almost always come back normal. I was not really concerned. Mostly, I
wanted them to tell me she was fine so we could get home before my son’s
bedtime. I put him to bed at night and I didn’t want to miss it. It’s my
favorite part of the day with him because it’s just the two of us.
We waited and watched the clock, waiting for them to tell us
to go home. We wondered how much longer. Then, she had a seizure as I was
holding her in my arms. Those were the scariest thirty seconds I had
experienced in my life (I had no idea that far scarier things were coming). I
called out to the nurse, whose name I somehow managed to remember. She came
running in, followed by a doctor. They confirmed that my daughter was having a
seizure and said they were going to admit us. After that, nurses came in and
put an IV in my daughter. She looked so small and helpless as they held her
down to insert it. Soon after, a neurologist came in to talk to us. I learned
later that her name is Dr. Brinkley. I have gotten to know her much better than
I wanted to, unfortunately. She came in and said my daughter’s brain was
“abnormal.” I didn’t hear anything after that. Once she left, I asked Sean what
she had talked about. I couldn’t understand the words he said, either. I was in
disbelief. Abnormal? What the hell did that mean? It couldn’t be. She was so
sweet and perfect. How could anything be abnormal about that perfect child? I
couldn’t believe it. I made her repeat this all to me again later that night.
It felt as if I had been punched in the stomach – repeatedly and hard. I was
certain they were wrong or had gotten her scan mixed up with some other kid’s.
The rest of
the night was a blur. Annalise was hooked up to an EEG machine and had wires
coming from all parts of her body. They moved us upstairs to the “critical care
unit.” I was so confused about why they were making such a fuss. I thought they
must be taking precautions and were being very thorough. I found it so strange
that they would put us on this unit when there wasn’t very much wrong with Annalise
except a few seizures. I still assumed we would get some medication for her and
take her home in the morning. I was very wrong.
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| The First EEG |
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| The First EEG |
The next
morning, the head neurologist came in and asked if we wanted to see her CT
scan. I didn’t want to, but my husband said yes and I just went along with it.
If I didn’t see it, maybe it wouldn’t be true. He showed us a picture of a
“normal” brain and then he pulled up a picture of her brain. I prayed for a
miracle. I prayed that the picture he showed us would look like the normal
brain. I prayed that it was all a mistake. And then I saw her scan. Sure it was
smoother than the first picture he showed us, but it certainly had ridges and
folds! It was not possibly as bad as he said it was. The only other thing I remember
from that conversation is that he said that on a scale of mild, moderate, and severe,
Annalise fell in the moderate category leaning towards severe. He also said she
would likely never be independent, but that kids proved the doctors wrong all
of the time. The rest is a haze of doctors, confusion and tears. Every one that
came into our room gave us “sad eyes.” I grew to hate the expressions that they
made. I would read a mother parent’s blog about how far their liss child have
come and then I would get sad eyes and go back to that dark, hopeless place
that I spent much of that first week in. One doctor, maybe just starting out
after medical school or even an intern, cried during one visit to our room. She
lowered her face so that we didn’t see, but my husband still saw her. The
situation felt even more hopeless after that.
I looked at my sweet baby girl lying in the bed with all of
those machines hooked up to her. The little girl that I had hoped and prayed
for. The little girl that had met every milestone so far and looked so perfect.
I wondered how it was possible that that sweet angel of a child could possibly
be imperfect. It didn’t make sense and it was not fair. It wasn’t fair for her,
who would have to live with this. It wasn’t fair to us, who would have to
adjust our lives to care for her. It wasn’t fair to her brother, Elliot, who
adored her. Nothing made sense.
The next two days were a blur seen through tears. I cried so
much in those first few days that I thought I ran out of tears. My mind went to
a dark, desperate place. I felt like I was living someone else’s life. I don’t
remember much of what happened, but I do remember the hopelessness and the
constant explaining to family members of what was going on.
We went home on Monday. We were relieved to be out of the hospital
and return to our normal lives. We did not realize that we were being very
naïve until Tuesday. Annalise started having seizures that morning. I called
the neurologist and I was told to give her more medicine. She then started
doing a new type of seizure. Her eyes would roll back into her head and her
hands and feet would clench. After many more seizures and more calls to
neurology, they told us to return to the ER. We threw our things back in a
suitcase and off we went. The same doctor that examined her our first night was
on call. A neurologist, Dr. Jackman, came back to give us our options. They
could admit us or send us home with the larger dosage of medicine and see if it
worked. I asked him what he would do if it was his child lying on the bed. He
said he would go home and see if the meds did their job. Off we went. By that evening, we were seeing more of the second type of
seizure. We were told to skip the ER and go straight up to the critical care
floor. We were put back into the same room we had just left. Anna was hooked
back up to the EEG and I hoped and prayed for a seizure so that they would tell
us what was going on. That evening and into the next morning, she had three. I
felt some relief that they could tell us what it was, but felt an even bigger
loss when we were told she was having infantile spasms, which are much harder
to control. She was to be put on another type of medicine to try to control the
spasms.
I learned on that day that I would have to be her advocate
and fight for what was best for her. I wanted her to start her meds that very
day, but I wasn’t having any luck getting an order put in for it. I finally
demanded that she get her medicine and they made it happen. She screamed and
cried that night. We couldn’t calm her down. We were shattered and defeated.
Our little girl was suffering and there was nothing we could do. Later that
day, I requested a feeding study be done. So many doctors and nurses asked if
she chocked or cough when she ate that we began to worry. She did, but we
thought it was normal infant stuff. I honestly thought she would pass the
study. I had requested it just to be safe. Then, I saw the techs whispering
behind the glass and I knew that it was not good. They started by trying to
explain what the body should do. I asked her to just tell me whether Annalise
would need a feeding tube and explain the rest after. She told me that Annalise
would likely need a feeding tube. It felt like another punch to my stomach. We
would have to learn how to insert a tube into my child’s nose. This felt less
and less real.
Back in our room, I told her developmental pediatrician team
that the next time they came back, they better have some good news. I was tired
of hearing one bad thing after another. I was breaking inside and they just kept
giving us more bad news. When they came back, we were told that the flu
restrictions had been lifted and 2.5 year old son, Elliot, could come to visit
us. We missed him so much! We ordered a pizza and tried to act as normal as
possible. He jumped up on her bed with the iPad and said “Sister, come watch
the iPad with me.”
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| Elliot's Visit |
He treated her just as he always did and had no idea that
his world had also gotten turned upside down. While he was still there, the
nurse came in to give us a lesson on how to do insert the feeding tube and they
let us practice with a doll. Grandpa
took Elliot to play in the play room next to ours. My husband tried first. He
was so scared his hands were shaking. The tube kept coming back out of her
nose. After the third try, the nurse had to do it. They told us we could try
again later because we couldn’t go home until we both could do it.
The next morning, Thursday, I woke up that determined to insert her feeding tube because it was what she needed
and I wanted her out of the hospital. We had been there since the previous Saturday. I inserted the NG tube on my third try. It was
heartbreaking to watch her cry, but I knew it had to be done. At the next
feeding, my husband did it by himself on the first try. We had already figured
out how to feed her in a way that allowed us the use of both of our hands. We
were becoming pros at something that just the day before had horrified us.
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| Becoming pros with the ng tube feedings. |
I
thought I would be so happy to be home. I wanted out of the hospital full of
bad news and shattered dreams. However, I walked into my house and immediately
wanted to leave. This house belonged to the old us; us before the diagnosis when we
had hopes and dreams of our perfect family growing up in that house. We had
plans of renovations we wanted to do. We were different people then. The family
that came home was not the family that we had been prior to the diagnosis and
we had no idea how to put our lives back together and move forward. We still
are not the same people that we were the morning of April 9, 2016. I do not
think we will ever be those people again.
Once again, we are celebrating diagnosis day; the second anniversary of the day we
were told Annalise has lissencephaly. I have been reflecting on the past year
and all that has occurred. Overall, we have had a phenomenal year. Annalise has
made so many gains. She is doing things that we were not sure she would ever do.
She has been seizure free for about a year and four months. Her vision has
improved and her ophthalmologist described it as “good.” That was not something
I ever thought I would hear. This year, Annalise learned how to roll over.
She can hold her head up and look around while she is on her belly. She moves all over the place independently and we love to watch her play. Her grip of
objects has improved. She is so close to being able to sit independently and I
am confident she will do so soon. She stood (with assistance) for the first
time, which was an incredibly emotional event that I was lucky enough to
witness. She also said a few words (nana, dada, Issac, hi), but she does not say them often. Still, it is pretty incredibly to hear her sweet voice. We are so proud of her and how hard she works. Most importantly, Annalise is happy and she is
healthy. We have spent much less time this year at doctor’s appointments and in
the emergency department and we are so grateful for that.
have to brush her hair. We had to cut her hair to make hair washing and brushing easier. While that does not seem like a big deal, it was a hard choice for us to make. Lissencephaly has taken a lot from us. That was just one more choice that was taken. Moms of neurotypical kids get to decide when to get the first hair cut, what type of toddler bed to buy their kids, etc. We do not get to make choices like that for Annalise and it can feel pretty defeating. Annalise is doing well in terms of eating soft solid foods, but also developed an aversion to spoon feedings. At one point, she was eating up to four ounces at a time. Now, we can barely get her to eat anything that requires a spoon. We are working on this, though, and I have hope that we will figure out what will motivate her to eat more. I know that we are very lucky that Annalise is doing so well so I focus on the good and try very hard not to dwell on the bad.
Being a special needs mom is difficult. I am often
asked how I do it or told by others that they could not do what I do. I tell
them I do it because I love this child so damn much that I would do anything
for her and they would, too, if put into this position. To be honest, I
sometimes do not know how we do it. I have no idea where I find the energy to
put one foot in front of the other. I am constantly exhausted and live in a
constant state of panic because there is rarely any warning before the next
emergency hits. I have self-diagnosed Sean and myself with PTSD. I hope and pray every day for a miracle to occur to make Annalise's life a little less challenging. I still have a difficult time being around other families and not being jealous that their children were all born with a typical brain. 
Regardless of the hardships, I
get through each day knowing that I have three amazing children that make me incredibly
proud. I wish things were easier for Annalise, but I know that she is perfect exactly as she is. Elliot, Annalise, and Issac love each other so
much. Developmentally, Annalise and Issac are similar in age so they are the
best playmates (until Issac pulls her hair or Annalise kicks him with her
AFOs). I will really miss their relationship as Issac continues to progress and
surpasses her abilities. I also have a
wonderful husband that is an incredible father. We have an incredible extended
family that steps in to help whenever we need it. This is a hard life. We deal
with a lot of difficult things that have come with this diagnosis. I recognize
how lucky I am, though. My children are all with me. I get to love them and
hold them daily. I try very hard to remember this when it gets difficult. If
Annalise can get through the tough times and still have a positive attitude and
a beautiful smile on her face, then so can I. I owe that to her and her
brothers.
