Wednesday, February 28, 2007


Yesterday's storm dumped a ton of heavy snow. After the storm passed it was sunny and calm. DH and I took little man Crew for a walk. We bundled him up, pumped up the "always" flat tires on our jogger and headed out. The blazing sun along with the brilliant white snow was more than his gorgeous eyes could handle. For most of the walk Crew sat back with his eyes closed and a smile on his face.

S loves the snow. His snowboarding days have been far and few between this year. We have a cool park close by where the neighborhood kids love to go sledding and boarding. The funny thing is the park is usually abandoned during hot summer months due to wasps.

DH is great about pushing the stroller up the numerous hills found in our neck of the woods:)

Wednesday, February 21, 2007


Monday night was as bad as Sunday night. Crew cried for probably 4 + hours. It was kind of the, "I feel deserted" cry. That's better than the "I'm raging mad" scream.

Tuesday night...... nothing. Zip, Zatta, Zero!

Crew slept from 8:30 pm - 6:30 am! My internal clock does not know what to do! I was wide awake by 4:30!

Tonight we cross our fingers, we hope and we pray that little Crew man will make it through the night, AGAIN!

Monday, February 19, 2007


It's been 5 months since Crew's horrible grand mal seizure. I can't believe it's been that long. After the seizure I was terrified and started sleeping with Crew... just in case he had another one. Now we've developed bad habits. Crew has really gotten use to having me with him. I haven't had a good nights sleep since. The seizures are under control but the sleeping isn't! Crew is a strong-willed little boy and has been known to cry it out for hours. I always give in because it's easier and everyone sleeps better when mom gives in.

It has to stop.

After visiting Grandpa and Grandma on Sunday night we decided to leave S & H there overnight so we could bring Crew home and let him "cry it out". He fell asleep about 10:00 pm and woke at his usual midnight. After letting him cry for a bit I went in and reassured him then went back to my bed.... AND I DID NOT BRING HIM WITH ME! Now, aren't you proud of me!

He cried and cried for probably 4+ hours. Tonight, I've got S & H settled down on the couches and we are beginning night 2 of "THE END OF THIS PHASE"! Lets hope he figures this out quick because I need my sleep back!

After a beautiful sunny weekend we woke this morning to about 6 inches of snow! DH was working on the basement so I tackled the task of shoveling the driveway. It felt great! The sun was shining and everything felt calm and peaceful.

I put in a half day at work. Grandpa and Grandma brought S & H to the office. They watched a movie in the kids room as I was finishing up and then I brought them home. School starts up tomorrow. Tuesdays are crazy because I drive carpool and I have to get the 3 boys and myself ready by 7:45 am. Crew catches the bus at 8:00 and then I head off to work.

Saturday, February 17, 2007

Beautiful Day

The warm weather was great today! DH filled the fire pit and we burned some wood scraps and dead flowers. Hmpf... I'm a little slow cleaning out the flower beds this year. There's something about fire that seems to attract the neighborhood kiddos. They love running over to "help". Crew ran around outside in his walker and spent some time in his long lost swing. The day was beautiful! I think all of us were in need of a little sunshine. The kiddos were wearing shorts and t-shirts. What is that about!

DH and I thought we had tried all the restaurants available in our little community but realized we had never been to "Hunan Village". The place is a dive but I've been hearing good things about it so we went. The food was really good! Our babysitter fell through so we took Crew with us. He was so stinkin funny! He's really got the "PLEASE" sign down pat. I think the kid drank more soda than I did!

The past 4 -5 months have been rough as we have been trying to find the right seizure meds for Crew and the correct doses. Sadly, the meds really have "taken" a piece of his personality. We were able to get the Depakoate up to therapeutic levels. I haven't seen any myoclonic seizures in weeks and only 2 or 3 brief absense seizures. We weaned him off the Topamax early this week. I'm seeing our little Crew again! It has been so fun. He is laughing a lot more... a deep belly laugh. Even, Cathleen (our little nanny) has noticed.

Crew is going through another phase where he thinks pulling off his hearing aids and glasses is hilarious. I was concerned that the aids were bothering him. Maybe a possible ear infection. The pediatrician ruled that out... said his ears look normal. I will be seeing the audiologist again soon so hopefully we don't have any negative pressure in there. I'm thinking that he is just discovering the aids all over again. I'm hoping this phase doesn't last as long as the first time. I've alerted the bus aide and his preschool teachers to keep watch. Losing the hearing aids is the last thing I need:)

Friday, February 16, 2007


Okay, I know this will date me but don't you just think our little ones are missing out! DH and I come from the Smurferrific era of Smurfville. Isn't that like the 80's version of the Bloggerific Blogosphere?
DH has a Smurf pillow case and a plush Smurf sporting an "Elder" nametag from his mission.
In our family we have the following Smurfs:
Quiz: Who said, "One should live to Smurf and not Smurf to live" and what does it mean?

Thursday, February 15, 2007

Gratitude Post

It's been one of those weeks....

Time for another Gratitude Post. Five things I am thankful for:
  1. New Jeans- I don't buy new jeans very often but today I am wearing a new pair and they fit great!
  2. Mouse traps- I've spared you all the details of our mice problem. They're still making their way into our house and we are still trapping them. Still don't know how they are getting in here. Ick!
  3. Sleeping kids- The house is quiet except for the sound of DH's C-Pap machine. White noise is good!
  4. A clean floor- I sleep better knowing the floors are clean.
  5. Basement Projects - Thanks Dad and DH for framing last weekend!

Sunday, February 11, 2007

The NICU (continued)

The next morning I got a call from a doctor in the NICU. He reported that Crew had a rough night. Initially, the staff decided was doing well on the vent and he didn’t need it anymore. Without weaning him off, they took him off the vent and he crashed, he stopped breathing. They basically had to bag him or resuscitate him to get him going again. And then the seizures started. When the doctor told me this I really didn’t “get” what he was saying. Over the next few days, months, and years it has really settled in and I just don’t understand how this mistake could be made.

Carl and I went up to the NICU that morning and the doctor pulled the curtain around Crew’s little isolette and gave us the talk. She talked of seizures, mental retardation and possible CP. I hated her! She kept repeating the same thing over and over. She asked us if we had questions and I was just stunned. It was all so overwhelming that I didn’t even know where to start. I didn’t even know what to ask.

The next few days were a blur. We spent many hours standing beside the isolette. Carl made a trip in each morning before work. The nurses reported that he would read Crew stories, Hop on Pop, Green Eggs and Ham, etc. They were impressed as they had never seen a dad do that before.

On day 5 they decided Crew was finally stable enough to do an MRI. I had a hard time getting info from the doctors throughout that first week as I was learning that I needed to be more assertive. Finally, during the evening of day 5 after several attempts at contacting the Dr. he called me at home. I will never forget where I was when he called. I had just sat down to “pump” and Carl was at work. This Dr. reported that the MRI showed “significant” brain damage in many areas of the brain. I asked where and how it would affect Crew. He told me that it could affect his movement, thinking, body temperature, swallowing. I couldn’t believe what I was hearing. This information was more than I could take at the time and I was upset that I had to hear it over the phone.

Finally on day 6 Crew was taken off the vent. When I arrived at the hospital and saw that they had removed the ventilator, I was thrilled. He was still being tube fed but making progress. When Crew was one week old I was able to hold him for the first time. I was physically exhausted at that point. They laid him in my arms and the warmth of his little body and the peace and comfort I felt was relaxing. I immediately fell asleep.

The next two weeks were mostly uphill from there. When he was 10 days old Crew graduated to the “stepdown” NICU. This is a separate room where babies don’t need the vent anymore but are still learning to eat. They still need to be monitored. Most of the babies were preemies and needed to be fattened up. The nurses were great and the babies in there had nicknames. They named Crew, “THE MOOSE” because he was so large compared to all the preemies.

To this day I am so thankful for the positive nurses and therapists. Our wonderful, OT, Annie gave me hope. After all the speculation regarding Crews ability to suck and swallow, Annie stood up and declared, “What are you talking about that he can’t suck.. “ and she pushed her finger into his mouth and said “HE CAN SUCK!” Annie was with me that first day that I tried breastfeeding Crew. She showed me all the tricks and she rejoiced with me when he latched on during my first attempt. He was a pro!

Dr. Nance was another optimist that made a difference. One day during that first week in the NICU Nance stood beside me as I peered into the isolette, put his arm around my shoulder, and talked about the amazing brain. He talked about how even when brain damage occurs in an infant the brain often has a way of creating new pathways. The probability of an infant or small child to recover from something so traumatic is significantly higher than that of an adult.

Another positive experience occurred when two of my good friends visited. I believe it was the first day. Crew was hooked up to a high powered ventilator (I can’t remember what it was called). This loud machine was needed to force air into his little lungs and this caused Crew’s entire body to shake. Watching it was quite disturbing! My good friend, Cameo, commented that she imagined a host of angels surrounding his bed cheering him on. I had never thought of it like that before and so I really appreciated her comment.

On the weekends we were allowed to bring the other children with us. Being together with all of my boys was a special treat. They each got a chance to hold Crew and read more stories.

Over the next couple weeks Crew continued to improve. After 3 weeks, Crew was able to come home. His progress was steady and quick! We were thrilled. He came home without wires and without oxygen. I was breastfeeding him 100%. The day was a special one and I’ll never forget how happy I was to have him home just in time to celebrate my birthday.

The days of the NICU proved to be life changing emotionally and spiritually. I had several spiritual experiences that have altered who I am today. I know that during these hard times, we are not alone. I’m so thankful for that!

First Day of Preschool

Waiting for the bus...

My first bus ride. The car seat is great!

Bye Mom!

I expected the bus to arrive home about 11:30am. At about 11:45 I called transportation to find out where my little boy was. I was relieved to find out that they hadn't lost him. Crew is the first one picked up and the last dropped off. It was nearly noon when he arrived. I walked onto the bus to get him out of his car seat. He looked happy even before he spotted me so that was reassuring. I think he had a good time.

This is what the teacher wrote in his take-home book:
"Crew had a great 1st day of preschool. We ate yogurt for snack. He drank chocolate milk out of a straw at snack. He was very happy and excited all day long. Mis K worked with him for most of the day but everyone that was in class couldn't help but interact and talk with him. :)

I can't believe my little one is such a BIG BOY!

Thursday, February 08, 2007

Transition time

I took this picture last week on Crew's last day of preschool with the Early Intervention program. The yellow swing is fun fun fun. I want one in my basement.

Now that Crew is 3, he moves into the Special Education Preschool. Tomorrow is the big day that I send him off. The bus comes at 8:05 AM. I'm nervous. His teachers don't know Crew. They've observed him once or twice but haven't spent any real time with him. Will they know how to care for him? Will they love him? I feel good about the main preschool teacher. It seems that she cares about the children which is the most important requirement, I believe! In my heart I know it will work out but it's the "natural" mom in me to worry!

Wednesday, February 07, 2007

Birthday Boy

Superbowl Sunday was Crew's 3rd Birthday. The poor little guy wasn't feeling well so I wasn't able to get any real great pictures. I kept him home from church and was glad I did because he took a really long nap.

We had family over. We tried to watch the Superbowl inbetween presents and birthday cake. My brother and SIL K came with E and Grandpa and Grandma. We wanted a low-key party. It was fun. I thought a Superbowl cake with candles would be appropriate:)



Sunday, February 04, 2007


I saw Dr. Nance for the last time on the afternoon of February 3, 2004. I went in for my weekly checkup. My blood pressure was normal, baby’s heartbeat was fine and I was dilated to 2 or 3. I went home. I felt fine.

On the morning of February 4, 2004 I awoke at 4:33 am. When I awoke suddenly and realized that I was feeling some pains, I was elated. I knew this was the day that our baby would be born. I went downstairs to play solitaire on the computer, hoping to pass some time. After about 1/2 hour I was feeling really uncomfortable so I went upstairs. I tried lying down in bed but the pain was so intense. I went into the bathroom to check for blood. Everybody knows that bleeding is a sign that something isn’t right and so I was happy to see that I wasn’t bleeding. I tried to lie down in bed again. I was having a hard time breathing and began to feel lightheaded. I made my way to the bathroom again to check… again nothing.

I woke Carl and told him I was in labor and that we needed to leave. I didn’t want to leave too early but the pain I was feeling was different. I hadn’t experienced it before. I tried timing the contractions but was unsuccessful. Carl got dressed and I asked him to grab the bag I had packed. I told him I would be waiting in the car and we really needed to leave. As he was grabbing the bag and his coat I started for the car. I was so incredible weak and shaky, lightheaded… I couldn’t walk, so I crawled. I crawled to the garage and got in the car. I remember that Carl got in and as we backed out of the driveway I looked at the clock in the car and it was 5:15 am.

The drive to UVRMC would normally take about 30 minutes. In an emergency, one could get there in probably 25 minutes. It took us 45 minutes! The drive was horrible! Snow was coming down… big fluffy snowflakes. It was white-out conditions and the free-way had not been plowed. We drove through several inches of newly fallen snow. I could feel the car sliding from time to time. I gripped the door handle in silence. I was scared! In my heart I knew that if we slid off the road, I would die. I remember commenting to Carl that I couldn’t figure how to time the contractions because I couldn’t tell when they would stop or start. My stomach was hard the entire trip. It felt like one long gigantic contraction.

Carl pulled up to the curb and I got out. He quickly parked the car. I told him I couldn’t walk that I needed a wheelchair. I couldn’t believe how wimpy I was acting! Within minutes we found ourselves upstairs at the Labor & Delivery check-in. We sat down and the nurse gave us the clipboards. She began asking me questions. She sensed that I was hurting and asked me how far apart the contractions were. I told her that I couldn’t tell when they stopped. She asked me a few more questions and then told us we could fill out the paperwork later. She sensed my discomfort. They gave me a gown and I quickly put it on and then requested that I be checked immediately.

The nurse came in and checked me. I was still dilated to a 2 or 3. The same as the day before! I couldn’t believe it! I thought for sure I would be like an 8 or something. Then she checked for the baby’s heartbeat. I immediately sensed her worry when she was unable to find it right away. After several seconds she was able to detect a heartbeat but it was very faint and quite slow. Within seconds there were about 6 – 10 medical staff surrounding my bed and moving stuff around. They wheeled me into the Operating Room and explained that we needed to do an emergency C-Section. People were scrambling around. They gave me an epidural and told me that normally it takes about 5-8 minutes to work but they would only give it 2 minutes. The nurse was prepping me to have the C-section and as she started applying the iodine stuff another staff member grabbed it from her and said “We don’t have that much time”, and he dumped the whole bottle onto my tummy. I looked at Carl and he was white. I mentioned to someone that I thought my husband was going to pass out. They told him to sit on the floor against the wall and someone threw him a sheet and pushed him over.

I was really scared but I tried to cooperate. I wanted them to get the baby out. Someone asked me if I was okay and I said, “Yes, I’m just worried about the baby”, and he said “You have a right to be!” Uggh! That wasn’t what I wanted to hear.

Six minutes after they had wheeled me into the OR my baby was born. Nobody said anything, and I didn’t hear the baby cry. They grabbed the baby and ran out of the room. I didn’t know what was going on and I was too afraid to ask. I didn’t even know if he was alive. I just layed there while they worked on me wondering what was going on. Finally, after what seemed like 5 minutes, somebody said, “Did you know if you were having a boy or a girl?” I said “No”, we wanted it to be a surprise and he said, “You have a beautiful baby boy but he is very sick right now”. They were working on him and that’s all I knew.

Crew was born at 6:11 AM, 7 lbs 8 oz., 20 inches long. Apgar score 3!

Once they opened me up it was easy to see what had gone wrong. I experienced a Grade 4 Placental Abruption, which is a complete abruption of the placenta. The placenta was covering the cervix which is the reason why I had zero bleeding. The blood had pooled up inside of me. Crew was with little or no oxygen from the time the placenta detached until he was born. I believe the placenta detached at home well before 5:00 AM which tells me one thing. Crew is meant to be here because his life cannot be justified medically. Crew is our Miracle!

I don’t know a lot about shock except I’m pretty sure I experienced it. They wheeled me into the NICU to see my baby. I couldn’t sit up and Crew was all hooked up to machines. All I could really see was his little feet. I felt so bad that he needed so much support. I was in denial.

They took me to my room. I don’t remember much about that first day. I do remember that I received phone calls galore and it was helpful to know that so many family and friends cared. I was so tired and it was a battle to keep my eyes open. I didn’t realize that first day the situation we were in. I kept expecting them to bring Crew to me. I don’t even remember if I went back to the NICU that day. I don’t think I did! Reports from NICU staff indicated that Crew would likely be taken off the respirator within the first 24 hours.

… (THE NICU) to be continued

Friday, February 02, 2007

My first IEP

In order to transition from Early Intervention services to the School District Special Education Program each "potential" student must have an IEP (Individualized Education Program). An IEP is basically the detailed plans including goals and services appropriate for that child. Today was the big day. I've been dreading it, yet looking forward to getting it in place and having it out of the way.

Yesterday, I spent the entire day finalizing my plans and educating myself in regards to the State Law and what Crew needs to receive through Special Education. I had an awesome team there in support of Crew, his therapists and my sister (best advocate ever). I was surprised that some things went smoothly and other areas turned ugly.

I'm too tired for details right now but to sum it up:
3 days a week in the AM (yeah!)
School bus transportation (yeah!)
Excellent Speech and Language services :)
Audiology services including an FM system in the classroom

And the ugly fight still to come:
PT Services
OT Services

The school district is fighting against providing those services seperate from one another by "Certified" PT and a certified OT.

We didn't give.
They didn't give.
It's not over!

After 2 1/2 hours we ended the IEP with a Diagnostic IEP to conclude in 30 days during which time I will be doing my homework.

I'm annoyed because it's not over! Uggh!


I switched over from the old blogger to the new (google account) blogger. My SIL said she was having problems making comments. Has anybody else tried to comment and been unsuccessful? If so, please e-mail me at


Thursday, February 01, 2007


After experiencing a miscarriage at 12 weeks and nearly a year of “trying”, we were thrilled to find that we were expecting. I discovered that I was pregnant at probably 4 weeks. I felt healthy. I was active. For the first time ever I had found a really great running partner… reliable, good company, etc. We had been running together for almost a year. My friend had always kept running throughout her first two trimesters. I wanted to follow her example and didn’t feel it was necessary to stop exercising all together. We kept running 3 times a week, about 3 miles each run nothing too strenuous, but just enough to feel good. At about 6 or 7 weeks, Carl and I stopped at his sisters for a quick visit. He pulled into the driveway and I got out of the car to check and see if they were home. As soon as I stood up, I felt a gush! I took one look at Carl and said, “We’ve got to go home”. We drove the 5 minutes back home and I went inside. After previously having a miscarriage, I was convinced that I was losing this baby. I called Dr. Nance and told him that I was having a miscarriage. He scheduled me for an ultrasound that day. When I went into the Dr’s office I was completely convinced that I had miscarried already. The ultrasound showed a live fetus. I couldn’t believe it! Dr. Nance sent me home with instructions to limit my activity for the next month.

Sitting around and being lazy was hard. It was early summer. I wanted to do all the fun active things that come with summer time. However, I followed the Dr.’s orders and kept my activity low. The follow-up appointment a month later showed that everything was okay. Dr. Nance gave me permission to resume normal activities. The rest of the pregnancy was uneventful. I didn’t have anymore bleeding and I felt really good for the most part. I was able to keep the weight down within reason (unlike baby #2).

With our first two boys, Carl and I found out the gender before the big day. In my heart I knew they were boys and the ultrasound simply confirmed my feelings. We decided with this pregnancy that we would wait until the Birth to find out. I imagined how exciting it would be to delivery this baby and have the Dr. announce “It’s a BOY or it’s a GIRL”! I love being the mom to boys yet having a girl would add a lot to a family of boys and so I was okay either way. To tell you the truth, I had no idea this time if I was having a boy or a girl. It was exciting!

Our baby was due February 12th, 2004. During this pregnancy, Carl experienced a company wide layoff. I’ve learned that blessings come in unusual ways because our being “unemployed” qualified myself and baby for Medicaid. I had never used Medicaid before and didn’t realize how having this insurance coverage would impact the life of our family. Carl was able to find employment with a company that required too many hours, too little pay and insurance after 90 days. I checked the calendar often realizing that the insurance would take effect February 1st. I hoped that I could make it that long so we would have “double” coverage. During the month of January, I often joked that this baby could come anytime after the 1st of February. January came and went. We invited my sister to stay with us so that “just in case” the baby came in the middle of the night we could pick up and leave without having to wait for somebody to come over. Little did I know that this decision, this one time saving element… would save my baby’s life!

... to be continued