Emma's Grace

Wow! Am I bad at this. I totally forgot to publish this and just now noticed it.

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Today was rough. Previously, we had an MRI, EEG, and X-ray scheduled, with Emma being sedated. Because she had the EEG done before and during her hospital stay, she didn’t need to have that done again. She also had an MRI taken of her brain before going into the hospital.

Instead, today she had an X-ray and MRI of her neck and spine. We still had to sedate her. Her sedation was scheduled for 8:30am. Which meant no breastmilk after 2:30am, no water after 6:30am, and cutting her sleep by a lot. I got up at 2:00am to get in one final feeding. She didn’t even really wake up, but she ate which was the important thing. I got up again at 5:00am and woke her up. They wanted her sleep deprived. We were told to cut her sleep in half, but they didn’t really say when she had to be up by. I was hoping that 5am was early enough.

The poor girl just wanted to sleep and was rather cranky for a while. I tried to give her some water but it obviously wasn’t what she wanted. I did manage to get her to drink 3 ounces before the 6:30am cut-off. Thankfully she calmed down around 7am. I put her down to get Matthew ready to head to the doctor’s and I thought that she’d fall asleep. I was wondering if a 5 minute nap would hurt while I got her big brother ready. Amazingly, she found the colors of her gym exciting enough to keep her awake until we left at 8am.

The sedation wasn’t that bad. It was an oral medicine that the nurse gave her. Emma wasn’t thrilled about taking it but we got it down. It wasn’t too long and she was out! Then we had to figure out what to do with Matthew. I hadn’t thought about having to sit with Emma while she was having her MRI, which took about 30 minutes. We finally decided that Matthew would hang out in the tech room with the guys and the nurse that run the machine. They were very nice and gave him a cookie and juice, not something he usually gets at 9am, but we were having a special day. With that, and his coloring book & crayons, he was the best little boy. Everyone loved him, and one of the guys told him to come back and hang out again.

The MRI wasn’t bad. I sat with her in case we needed to pull her out quickly. The machine is very loud and they gave me a noise-canceling headset. Thankfully all went well. Next we were off to get the X-ray. Except there was no one there that could do it; we would have to come back. But before we could go, Emma had to wake up from the sedation and make some noise. We tried everything…tickling, jostling, loud noises…it wasn’t working. We finally moved on to a cold washcloth, which eventually did the trick. As soon as we were released, she was out again. She slept most of the day.

We went home, had lunch, and went back to go get the X-ray done. The X-ray tech took 4 X-rays while Matthew sat with the nurse who actually took the X-rays. Emma woke up for the X-rays, but was quickly back to sleep after they were done. The poor girl had a rough day. Matthew, on the other hand, had a blast.

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Emma’s neurologist appointment went very well. We initially made the appointment with the nurse practitioner with the hopes we would be able to see Dr. McCormick for a few minutes. Once they asked Dr. McCormick if she wanted to see us she immediately came in and we never saw the nurse practitioner. Everyone there was very nice. All of the nurses remembered Emma from when she was there with my parents. They also remembered Grandma & Grandpa. Dr. McCormick was even thinking of Emma the week before on a plane ride home, wondering how the little baby was doing. We are very thankful that all of the doctors and nurses have been so caring and willing to explain everything to us.

This was Jon’s first time meeting Dr. McCormick. He had spoken to her on the phone while we were in Vegas and they wanted to transfer her to Children’s Hospital. We were both pleased at her ability to answer our questions. After Dr. McCormick said she was thinking of us, we told her we were hoping to be able to see her this appointment. When I scheduled the appointment, they told me it would be 7-8 weeks to see her, but we could get squeezed in with the nurse. Dr. McCormick told us no, they would fit us in. It was very reassuring to hear.

The doctor was very happy with Emma’s current behavior. Emma is a very active baby now and totally different than the 1st time the doctor saw Emma. She let us know about some things to watch out for, including seizure behavior, her general development, and possible reactions to her medication. She asked about the ophthalmologist and physical therapy and I told her how those things were going. She was going to get in touch with those offices as well as get Emma’s file from Children’s Hospital.

Emma treatment will last anywhere from 6 months to 18 months. The most likely is 12 months. During that time, Emma’s development and progress will be monitored. The best case is for her to have no more seizures and that she will have normal development/growth curve (no plateaus or regressions in development), as well as no other abnormalities. If this happens, she will be weaned off the medication and observation will continue, with regular follow-up exams. When she is 24 months old, she’ll have another MRI of her brain to make sure it looks properly formed.

She also explained that the “classic” definition of epilepsy is having more than one seizure. As Emma has had more than one, she would now be classified as epileptic. But, that isn’t really the most useful definition, as it is something that she may outgrow, in essence. Dr McCormack plans to review all test results to see if there is an identifiable cause for the seizures, but expects at this point that we won’t know the specific cause.

So, for now our little girl is doing great, but we still have a fairly long road ahead of us. We’ve caught this about as early as could be expected, and are following the right course of treatment. There are obviously a lot of unknowns here, but we seem to be on track for the best result possible, given her condition (which we won’t fully know for awhile).

(Thanks to Jon for writing most of this.)

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Wednesday’s PT was a little slow. We are still getting a schedule down with the medication. The phenobarbital (PB) can cause drowsiness. Unfortunately, giving her the medication at 10am and having PT at 10:30am is not a good combination. Our time there was full of a sleepy baby and lots of tears.

Ralph tried to administer a standardized test to find out where Emma falls and as a benchmark for progress. The test is called the Peabody Developmental Motor Scales (PDMS). Because she was so fussy, he decided not to continue the test and end up with bad results. We will probably go thru the test again on Monday.

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We had our 4 month appointment for Emma. Our little girl really isn’t so little anymore. Emma weighed in at a whopping 17 pounds 7 ounces. That puts her in the 95th percentile for her weight. She is a chubby little girl, but her little rolls are so cute!

We’ve decided to hold off on shots for a week or so. We noticed Emma’s seizures just before her 2 month doctor appointment. So we definitely know that round of shots is not the culprit. However, she did have a Hepatitis B shot in the hospital right after she was born. Dr. Sabb said that it would be extremely rare for that shot to cause seizures. However, for our peace of mind and so we could check with the neurologist on Monday, we are holding off on the shots a week. If there is a possibility of the Hep B shot causing this, then we will probably skip that shot. Unfortunately, that shot is part of a combo shot. If we skip the Hep B shot, then instead of that 1 shot, she’ll get 3 shots, on top of the other 2 shots she needs to get.

Also, we discovered that the phenobarbital is metabolized in the liver, as is Tylenol. In order to keep the strain on her liver to a minimum, we won’t be giving her Tylenol anymore. She’ll be getting Motrin only. Normally, Motrin isn’t allowed until 6 months, but it’s better to protect her liver.

Monday we go to see the neurologist. We’re hoping that we’ll a few more answers then.

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We had our first physical therapy session on Monday. Since it was the first, it was just an evaluation. We spent our time in a small room with a mat and a lot of toys. Child physical therapy looks a lot more fun than adult physical therapy!!! Matthew came with us and we’ve received the OK to keep bringing him. He was very quiet and played with every toy he could get his hands on.

Our sessions will be 2 days a week to start with. I don’t know how long until we go down to 1 day a week, but we’ll just take it as it comes. Each session will be 45 minutes long. I’m not sure what they will entail, other than some playing. We’ll do more in our second session, as well cover some more things that we can do at home to help her along.

Our physical therapist’s name is Ralph, so you’ll be seeing his name on here often. He’s seems like a nice guy and was gentle, but firm with his maneuverings of Emma. He also talked a bit with Matthew. Hopefully Matthew will lose his syness with Ralph.

Ralph measured the angle of how much Emma can tip her head to each side as well as the angle of how far her legs will stretch out. There were also 2 measurements of her head. Her head is slightly flat on each angle. But the difference on the 2 measurements was only 4mm. Ralph said that if it were at least a difference of 10mm, then we would be looking into getting a helmet to reshape her head. So we are good with the head measurement and don’t require a helmet.

Overall, it was a positive experience for us and I can’t wait to see how this turns out.

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Emma was born May 22, 2007. She came quicker than her brother. After 15 hours of contractions, she decided it was time. After another hour, she was born. We made it to the hospital and it was time to push. There was no time for drugs. We checked in at 7:02pm and she was born at 8:00pm.

She needed a little help. The cord was wrapped over one shoulder and under the other. After the first couple of pushes, we saw her heart rate dip a little. The doctor decided that rather than put her in distress, we should get it over with. Out came the vacuum and out she came, a beautiful 7 pound 3 ounce baby girl.

July 24, at a visit with my Mom, she asked about some strange movements that Emma was doing. Curled up toes, stiff legs, odd breathing, and half-open eyes. I had noticed a couple of these things a couple of days prior to this, but hadn’t noticed them all together. 2 days later we had our 2 month check up with Dr. Sabb and just as I was going to mention it to the doctor, Emma did it again. The doctor said that if I had just described it, she would have probably thought it was just normal baby movement. But because Emma did it in front of the doctor, she recommended we visit a neurologist as a precaution. She mentioned that seizures at such a young age were uncommon, but to be safe, and I’m sure to give us peace of mind, she gave us a couple of names.

So I called Dr. McCormick to make an appointment. I called on July 30 and got an appointment on September 4. It seemed like so far away. It was around 2 weeks after making that appointment before I noticed any of the motions again. But they were sporadic and they lasted for only 10-15 seconds. By the time we noticed them, they were almost over. It was hard to tell if she was doing those motions or just baby movements. 3 weeks after making the appointment, Jon & I left the kids with Grandma & Papa Ware. I was hoping that Emma wouldn’t make the movements again and yet, that she would so someone else would see it. There wasn’t much significant activity. I was really hoping that we had seen the last of it.

Next was camping. Camping went well. But Emma’s aunt commented on Emma’s eyes. This was another problem, but not one which we were sure about. Her eyes would cross, or the one of them would turn in if she wasn’t focused on something specific. But babies’ eyes cross, so I dismissed it until the next doctor appointment.

Before we knew it, September 4 came along. It was time to see the pediatric neurologist, Dr. McCormick. She is a very nice woman. She spoke in words I could understand, yet didn’t make me feel like I was a dumb mom. She noted the left eye turning in and her tendency to keep her head turned to the right. She also took note of her legs, saying that they didn’t full extend like they should. She recommended seeing an opthomologist for the eye turning in, esotropia, and the gaze preference. She also recommended going to physical therapy for torticollis and for bilateral hamstring tautness. We were also scheduled for an MRI, EEG, and an X-ray on October 9. It seemed like it was so far away.

September 7th we made a trip to Lansing. Emma was fussy for most of the day Saturday. I thought I saw some of the same behaviors we had seen earlier, but it was so hard to tell.

September 11th we went for our opthomoligist appointment with Dr. Baker. He checked Emma out and found that it was the right eye that turned in. He also recommended we come back in about 4 weeks to check on the esotropia again.

September 20th, I noticed more behavior that could have been seizures…or restless sleeping.

September 22nd, we dropped Emma and Matthew off at Grandma and Papa’s house so we could go to Vegas for 5 days. Sunday morning, we flew to Vegas.

September 23rd. Mom notices seizures, including ones that look different from anything we’ve seen before. She gets worried and tries to call us, but doesn’t get through.

September 24th. Emma sleeps all day and Mom doesn’t notice any seizures.

September 25th. Mom calls us while we’re in Vegas. There have been more seizures and she is worried. They are coming frequently, 8 to 9 in a half hour alone…before, during, and after eating. We gave her the phone number for Dr. McCormick. I wasn’t sure what they would tell Mom. I was half expecting them to tell her what they already told me…write down what’s happening and video tape the “seizure” if they could. Dr. McCormick wasn’t in. Mom talked to her assistant. The assistant was concerned enough to call and consult with Dr. McCormick. Dr. McCormick had Mom bring Emma in for an EEG the next day.

Mom needed to wake Emma up at 5am and keep her awake until the 10am appointment, including during the 2 hour drive down. Thankfully, Mom was able to hold Emma while they hooked her up to the machine. She wasn’t alone. During the EEG, Emma had a seizure. They were able to see the behavior physically, as well as on the EEG test. As much as we didn’t want her to have seizures, this was and important time for her to have one. As soon as they were done, and the MRI machine finished with the person it was being used on, Emma was sent in to have an immediate MRI done. Previously we had discussed having her sedated for the original MRI that we scheduled. The machine is very loud and she needed to stay perfectly still to get the proper pictures. She slept through the entire MRI, stirring only once. That was very unusual.

It was determined that Emma was having short seizures, but they were clustering and that was very bad. Dr. McCormick told my parents that Emma was in serious trouble and that they needed to take her to Children’s Hospital of Michigan immediately. She was to be given phenobarbital immediately.

While I stood in line in Vegas to get my player’s card fixed, my parents were doing my job with my little girl. They called to tell us they were taking her to the hospital after they hung up with us. Jon spoke to my Dad and to Dr. McCormick. I’m glad he did it, I don’t think I could have remembered anything they told me or done anything but cry. After Jon hung up, we stood in the middle of the casino, surrounded by people, and yet in our own little bubble. Our little girl was in trouble and we were all the way across the country. We comforted each other for a moment and then we focused on figuring out how to come home early. Our flight home was at 6pm Thursday night; we managed to bump it up to 9am Thursday morning. That plane couldn’t fly fast enough. And yet, at the same time, I didn’t want it to land. As soon as it did, I knew that everything would be real. It wasn’t just talk anymore. I don’t know how I didn’t spend the hours between finding out Emma was going to the hospital and the moment I found her in her hospital crib just crying.

Mom and Dad took her to the hospital ER. Emma was checked out and given phenobarbital. Dr. McCormick had already sent the paperwork over so they knew just what to do. I don’t know when, but it was many hours before Emma was given a room with a bed.

And for this whole day, Matthew spent with our neighbor, Amy. After Amy’s, he came back to our house with my sister, Crystal. She watched him until Dad came and got him, and took him back the 2 hours to their house. Mom stayed at the hospital with Emma. Dad returned the next day, bringing Matthew back to Amy’s. He brought all of our stuff and our dog to the house. And he brought Emma her Mommy milk.

While in the hospital she was given another EEG, and it came back normal. The MRI was read and it was determined to be normal, thankfully, no tumors, stroke, or other brain damage. Since receiving the phenobarbital, Emma had no more seizures.

Our plane landed at 4pm Thursday afternoon. We raced home, got Matthew, grabbed something for dinner, and raced back home. I packed a bag, since I needed to spend the night and take care of my baby. I left and arrived at the hospital around 7:30. Seeing her in that cage-like crib, sensors on her toe and torso, and an IV in her arm, which they put a splint on, to keep it safe, was very difficult. After tears flowed for a couple of minutes, it was time to be strong for my daughter. My parents returned from having a quick dinner in the cafeteria. They filled me in on everything that happened, where things were, and how to take care of my girl with all of those wires and tubes.

That was the most difficult part. The sensor on her toe was for heart rate and blood/oxygen levels. The sensors on her torso had already fallen off and weren’t important anymore. The hard one was the IV. I had to make sure that I didn’t pull it out while holding her or feeding her. It seemed that soon after I got to the room, she started to fuss, knowing that her mommy was there and wanting the comfort of nursing. It was hard with that IV, but we managed.

We spent that last night in the hospital together. It seemed like I hadn’t heard her cry or talk in forever, real noises, not just wails. It was beautiful. I was so scared that crying was beautiful. I began to wonder how much she’ll change now that she’ll be more active, more like herself, after 2-3 of stagnant behavior. After talking to the neurologist and scheduling the tests, not once did it ever occur to me that she would have to go to the hospital or that it could get this bad.

September 28th, the neurologists at the hospital came to visit. They were hugely pleased with her progress in just 24 hours. She was very active and alert, more like a 4 month old baby should be. They recommended again that we see an ophthalmologist and a physical therapist. They reinforced that her legs were a little stiffer than they would have liked.

Jon and Matthew came to the hospital to visit us. It was too late Friday night to bring Matthew to the hospital, so they came Saturday. We were hoping to have Jon there when the doctors came through, but they came earlier than I was expecting. Thankfully, they discharged us early that afternoon.

Her seizures are controlled at the moment with medication, however, the cause of them is yet to be determined. She receives her medication twice a day. So far, she’s taking it very well and hasn’t spit it back out at me.

As things occur, I will post updates here, as well as her general progress.

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