STEPHEN

I started prenatal care in April 1999, with doctor Dimaano at about 2 ½ months pregnant.  I had a normal pregnancy with no complications.  I had Stephen C-section approximately 1 week before my due date because he was in the breech position.  I had Stephen on November 16, 1999 at 5:58 p.m.  He weighed 6 pounds even and was 19 inches long.  He was born at Mesa Lutheran Hospital.  The pediatrician on staff at the hospital saw him, I am not sure of the name.  We were released from the hospital on November 18, 1999 in the afternoon after a visit from my obstetrician and she cleared us.  

I went to see our first Pediatrician on November 22, 1999 for his newborn check up and every thing was fine.  He hadn’t started to develop the flat spot on the left side yet, not that I had noticed.  We went back to the Ped on February 8, 2000 for his 2-month check up.  This is where I first raised concerns about the shape of his head.  The Ped assured me that he would be fine.  She said all I needed to do was change his sleeping position.  Which made sense to me, because I always laid him on his left side.  So I did what she told me to do.  

When we went back to see her on his 4 month check up, I once again voiced concern.  The flat spot had not gotten any worse.  But by no means was it getting any better.  She brushed me off again, like I was an over concerned parent and that it would get better on its own.  On our last visit to the Ped, which was Stephen’s 6-month check up.  I got a little angry with her and told her, “Hey look, Stephen’s head was not any better and that I was starting to get concerned.  I wanted to know what could be done to correct this problem.”  Her reply to me on this visit was that she would no longer be practicing at Casa Blanca Clinic and that I needed to find another Pediatrician for Stephen.  I asked her if she was going somewhere else.  She told me she wasn’t going to practice for a while.  She was going to take a break.  I later found out that she had gone on to practice at Cigna.  

Stephen wasn’t sick between his 6-month and 9 month check up.  I had found Dr. Hamill, our new Pediatrician, right away.  But we didn’t see him until Stephen’s 9-month check up, which was on August 23, 2000.  When Dr. Hamill came in to see us, the first thing he said to us was, “What has been done about his head?”  I explained to him what I had been told by our first Pediatrician.  That I should change his sleeping position and that it would fix itself.  He told me at that point, that he was going to refer me over to Dr. Manwaring who was a Neurologist.  He said that when this situation has happened with his past patients, he normally refers them over between the ages of 3 and 6 months.  So I scheduled and appointment with Dr. Manwaring.  

The appointment was made for September 27, 2000.  When we went into see Dr. Manwaring, the first thing he asked me was why hadn’t I done something sooner?  So as I was getting frustrated, I again explained what our first Pediatrician had told me.  He told me he was going to send Stephen for a CAT Scan.  He had voiced his concerns of Stephen’s flat spot being on the left side of his head.  He said a larger percentage of flat spots were usually on the right side and fewer were on the left.  So he had concerns about pressure being on his brain.  He gave me a number figure when he talked of the percentages.  But I don’t remember exactly what they were.  He explained that we were going to go ahead and get him banded with what was called a DOC band.  But again he had concerns of the progress we would get because of his age.  But he thought it was worth a shot.  I guess banding an older baby is similar to piercing newborns ears versus a one year old.  The newborn would never even know they were there, as a one year old would know something was different and there would be a good chance they would play with them and not leave them alone.  

We scheduled the CAT Scan for October 13, 2000.  We had it done at St. Joseph’s Hospital.  Then that same afternoon, we met with Dr. Manwaring at Phoenix Children’s Hospital so he could read the results of the Scan.  He assured me that there was no pressure on the brain and that everything seemed to be functioning fine.  He sent me onto Cranial Technologies, where they specialize in the DOC band.  I was in contact with Cranial Technologies everyday, sometimes 2 and 3 times a day waiting for our insurance to authorize this procedure.  Because after talking with Dr. Manwaring, I knew we were working against time.  He had told me that the only play we have to work with was what was left of his soft spot.  So by the time my insurance approved this procedure, we finally were able to schedule an appointment for Stephen to be casted on October 26, 2000.  We went in for the casting.  They send the cast of their head out and make the DOC band to fit their head.  Stephen went into be fitted for his DOC band on November 2, 2000. This was exactly 14 days before he turned one year old.  

We then went in for fittings on the following dates; November 9, 2000, November 15, 2000, November 22, 2000 and December 7, 2000.  For approximately the first 2 weeks of this process, Stephen didn’t have a problem wearing the band.  They are suppose to wear it for 23 hours a day, with a 1 hour period that it can be removed for bathing purposes. But approximately 2 weeks after he was fitted, he realized he could pull the headband up and off of his head.  So for the next 2 months, we fought back and forth.  It was like a tug of war.  But we were only getting maybe 12 to 16 hours a day out of him.  We scheduled our next appointment with Dr. Manwaring for December 20, 2000.  There I explained what was going on.  He told me to try it for another 2 months.  We were hoping that maybe it would get old and he would leave it on.  

So we continued to do what we were supposed to do.  We continued to fight back and forth, but he never left it on for the full 23 hours.  We continued with our appointments with Cranial Technologies.  They were as follows; December 21, 2000, January 4, 2001, January 18, 2001, February 1, 2001 and February 15, 2001.  We were getting no progress.  So Cranial Technologies told me to go ahead and schedule another appointment with Dr. Manwaring.  So I set up an appointment for February 28, 2001 at Phoenix Children’s Hospital.  Dr. Manwaring agreed that we weren’t making any progress.  So he said he was going to refer us for Surgery.  He said that the best time for surgery to be done would be before Stephen turned 18 months old.  This is because his brain is still growing and it will be able to assist in the reshaping after the surgery.  He was referring me to see Dr. Joganic.  

When Stephen saw Dr. Hamill for his 15-month check up on February 19, 2001.  They had mentioned that he had a lazy eye and they were concerned and thought I need to take him to see a Pediatric Ophthalmologist.  I then went a scheduled him an appointment with Dr. James Wooton on March 5, 2001.  He let me know that Stephen was slightly far sighted and had a stigmatism in one eye.  He also informed me that until he was 2 years old, they wouldn’t know for sure if it were permanent.  That he was still young and his eyes might not fully be developed.  That I would need to bring him back at age 2. 

Then I went ahead and set up an appointment with Dr. Joganic, the Craniofacial Surgeon.  He said he agrees with Dr. Manwaring and that Stephen is considered a serious case and a good candidate for surgery.  He said that he could have problems with his vision, migraines, bite, jaw alignment and possible problems with his brain and the growth.  My husband and I have decided to go ahead and get the surgery.  The future problems that he can have are too much and to high of a risk.  A risk we are not willing to take.  I have asked the Neurologist, the Craniofacial Surgeon and Cranial Technologies if this surgery could have been avoided had he been banded earlier.  Not only one of them, but all of them agrees that this surgery could have been avoided.  They say that the key to correcting what is called Deformational Plagiocephely, or Positional Molding, is early recognition and treatment.  I have done some research of my own, and sometimes, changing their sleeping position does correct this problem.  But if you don’t see any progress with in the first month or so.  They state that other methods of treatment need to be looked into.  I feel that Stephen’s situation was neglected, and that all he is about to go through is unfair.  

Well here I am, 6 weeks post-op.  The sun couldn’t be any brighter.  First let me start this portion of our story out by saying, “It was well worth the worry and stress!  Stephen was scheduled for surgery on June 1, 2001 @ Phoenix Children’s Hospital.  So of course, I had to start stressing I would say about a week before.  I usually make myself a basket case when the pressure is on.  Especially when it comes to my children/family.  Anyways, Stephen’s God Parents, my husbands sister and husband Gima and Allen, flew in from New Mexico a day ahead of the surgery.  The arrived about 6:30 a.m.  She wanted to be there for us through the whole shah bang.  And Boy was she.  She was my Back Bone.  

We had to go to the hospital the day before for pre-op blood work.  Gima and I both held strong all through Stephen’s blood draw.  (Stephen is a slow bleeder.)  By the time they finished, Gima and I looked at each other and then both of our upper lips began to quiver.  But we made it.  Then we were given a tour of the hospital and all of the places we would need to be the following morning.  After all was said and done, we were finally on our way home.  We had to stop feeding Stephen approximately midnight.  So since I chose not to take Stephen off of the bottle until after the surgery and that is the first thing he asked for when he wakes up, I thought this was going to be a lovely morning.  My husbands Aunt Rose came to stay the night so she could go to the hospital the next morning.  We all went to Kenny and Nikki’s house, Gima’s son & wife, so we could all have pizza and have a family prayer.  It was very nice.  Then finally on our way home, you could only imagine the chaos.  I have a two-bedroom apartment.  So here we all go.  

I had my 10 year old staying the night at a friend’s house so he wouldn’t have to sit at the hospital all day.  We had Gima and Alan in our bed, Stephen was in my 10-year-old, Jonathan’s bed, Patrick and I was on the floor in the kids’ room and Aunt Rose was on the couch.  Gima and her Aunt Rose hadn’t seen each other in quite some time, so they decided to stay up and talk for a while.  They finally went to bed at 3:00 a.m.  The exact time I had set my alarm, because I had to stop giving Stephen clear liquids at that time.  So the alarm goes off and I get up.  So out to the kitchen I stroll to make coffee and start to get ready for the day.  I turn on the light above the stove so I won’t wake Rose and she tells me, “You can’t get up! I just went to bed.”  She ended up getting up and every body slowly started to rise and prepare for the hours ahead.  

When Stephen woke, he asked for a bottle one time and that was it.  I was so glad.  Because the last thing I wanted was for him to be grouchy and unhappy.  When we were all finally out of the house and on our way, I started to breath a little. We went up stairs to the 4^th floor to register.  Then they sent us into the waiting area to wait for our pre-op escort.  Once in pre-op, Patrick, Stephen and I all sat there.  Stephen was playing with all the toys they had.  He was so happy and content.  He had no clue.  I was doing o-k, even when the doctor’s came in to talk to us.  

I had plenty of prep time, with the entire doctor’s visits, the pictures I had seen on CAPPS and from everything I had read and heard from the support group.  I felt like I was prepared.  That I could conquer the world and then some.  So we waited and waited for what seemed like forever.  At about 9:00 a.m. a nurse, our nurse came to say it was time.  She let me carry Stephen all the way to the surgery room doors.  When I handed him over to her, I felt my heart was breaking into a million pieces.  Then he started to cry for me.  My husband was consoling him, me I had to turn and walk away.  Because I couldn’t stand it.  That is probably the first and only time I questioned my decision about this surgery.  I walked away crying telling myself, I did the right thing, I did the right thing, I did the right thing.  I wasn’t saying it to anyone, mainly to myself.  

The doctors told us the surgery would take 3-5 hours.  The nurse had told me she would call me in 1 hour to let me know how things were going.  When 1-½ hours had passed, I had the volunteer call the surgery room.  The nurse then called me back about 15 minutes later to let me know that Stephen was asleep and resting peacefully and they would be starting the surgery in a few minutes.  I was in shock.  They had had my baby for 1½ hour and they were just now starting.  I was upset.  I thought I only had 1½, or 3 hours at the most to wait.  Now I learned that my waiting had only just begun.  

She told me she would check in with me every hour and not to worry.  (Not to worry my rear end.)  So again, the waiting had begun.  And every hour she called and reported the progress of the surgery as promised.  I walked up and down the corridors, I went up the elevator and down the elevator, and I did cross word puzzles, ate candy, drank coffee, drank pop and just kept very busy.  When the nurse would call, I would fly to the phone and every time she gave me good news and told me they were done with this and beginning that, I would feel a little tiny bit of relief.  I would breathe a deep breath and feel happiness in my heart.  It was all down hill from here.  Then on the third hour, the nurse was about 15 minutes late.  So panic sets in of course, and just around the time I was getting ready to have the volunteer call the surgery room, I looked up and the Cranial Facial Plastic Surgeon walks in and tells me they would be wheeling Stephen down the corridor in a few minutes.  

The surgery went exactly as planned with no problems.  Stephen didn’t even need a blood transfusion.  They said they were 99% sure they would see all the results that they were hoping for.  My heart was racing.  Everyone that was there went to stand by the corridor that he would be coming down.  You should have seen us.  There was Grandma Jessie, Uncle Dave, Aunt Rose, Uncle Alan, Auntie Gima, Daddy and Mommy.  We were all so anxious.  But when they wheeled him down towards me, I felt like my life was complete.  At that moment I could ask for nothing more.  He looked so amazing.  I could instantly see the difference in the shape of his forehead.  He looked like a different Stephen.  The swelling hadn’t started, so you could really see the change.  So here we all go following Stephen in his bed down the corridors.  They are all moving at a fast pace, because they need to get him to his room and hook them up to the monitors and machines.  I of course jumped on the elevator with him.  He looked so peaceful.  All I could think was how much he meant to me and how much I loved him.  At that moment, I thought, how strong he was.  He had been through more then most people go through in an entire lifetime.  I was so proud of him.  

Once they hooked him up to everything and all was starting to settle down a little bit.  The family was allowed to come in and see him.  He was such a beautiful sight.  They had him on morphine every three hours for the first 24 hours.  Then they put him on Tylenol w/codeine for approximately ¾ of the day and from that point forward it was just Tylenol.  He slept most of the first day.  

We had a lot of support from so many family and friends.  I don’t think I could ever express how much everyone meant.  Gima and I stayed the night with Stephen at the hospital that night.  Patrick and Uncle Alan went home.  They had to pick up Jonathan from our friends house.  

Stephen rested peacefully that night. They kept him pretty sedated for the first 24 hours.  The guys came to the hospital about 9:00 a.m.  They brought Jonathan, This would be the first time he saw his baby brother.  He looked shocked.  But I explained to him that the worst part was all over and that the rest was all down hill.  He was on the mend and before he knew it Stephen would be running around and getting into everything.  Just like always.  

I think everything was so easy for me, because I had seen other’s pictures and read their stories.  So I knew what to expect.  Gima and I ran home, I live 20 minutes from the hospital, to shower and change clothes.  We were there about an hour.  When we were on the freeway going back, I got a call from my parents.  They were in the hospital parking lot. So by the time we arrived, they had barely walked in.  They had been driving for 16 to 18 hours.  They live in Reno, and left as soon as my mom got off of work on Friday.  I was so happy to see them.  I finally felt like I could sigh and relax.  All of the support was beyond words.  But there is nothing like knowing your Mommy and Daddy are there with you.  I owe them so much.  They have been encouraging in my decisions and have supported me through this and so much more in my life.  

They stayed at the hospital for a few hours.  Then they decided they would go to their hotel room to shower, freshen up and relax for a little while.  They took Jonathan with them.  So of course Grandma didn’t rest at all.  She had to take my 10-year-old Jonathan out to buy him a new skateboard.  My mom is and has always been extremely wonderful about making sure her Grandchildren are content and happy.  Since so much attention had been focused on Stephen, she made sure that Jonathan didn’t feel left out or forgotten in any way.  

Stephen continued to do well.  He was sleeping most of the morning, and I have to admit, as much as I yearned to hold him in my arms I was a little cautious.  He was hooked up to so much.  He had an I.V. in his neck.  They called this his heart line, (It was there for any emergencies that could arise.)  They had him on oxygen, another I.V. in the calf of his leg, an I.V. in each arm, (one for fluids the other for medication), they had the heart monitors on his chest for monitoring, they had an oxygen monitor on his toe and he had a catheters.  So as you can see, he had tubes and wires coming out of everywhere.  It was a little intimidating, to say the least.  

Slowly but surely they started to remove this or that.  I began to feel a lot more comfortable with everything.  He started to become a little more alert.  Every time he woke up, he asked for a bottle.  We slowly gave him liquids.  He kept everything down pretty good.  We dipped his pacifier in water a lot at first.  He seemed to enjoy that quite a bit.  When the Neurosurgeon came in that evening, he said he thought Stephen was doing real well.  I asked him about how long did he think it would be before he got to go home with us.  He said sometimes by the 4^th day but not usually until the 5^th or 6^th day.  To have patience.  We had the most wonderful nurses.  They were so kind, gentle and patient.  

When the second night came.  I was pretty exhausted.  I think the entire ordeal had finally caught up to me.  I was ready for all of our visitors to leave, so I could go to sleep.  Finally in bed about 9:00 p.m. and wouldn’t you know at 10:00 p.m. they admitted a 3 year old into the bed next to us.  She had pneumonia.  They were trying to get an I.V. in her, draw blood, get a urine sample and all of the other fun stuff they do.  So she was screaming and crying for a good 4 ½ hours.  Sleep.  I started to think I was never going to get any.  I felt so bad for the little girl, but I felt tired and cranky too.  So I ran down to the cafeteria and bought the biggest cup of coffee I could buy.  

The next day I must have got my second wind.  Because I felt O-K.  At least I didn’t feel like I was going to fall on my face or anything.  Stephen woke up that morning and was doing so good.  He was sitting up on his own and they had removed a lot of his wires and I.V.’s.  He was scared, because his eyes were pretty swollen and he couldn’t see at all.  So my husband or myself had to have him in our laps at all times.  Poor little guy.  He probably wondered when the lights were going to be turned back on.  

He ate mandarin oranges for lunch and he was holding all of his liquids down.  His eyes stayed shut completely for about ½ the day.  Once the swelling started to go down a little bit, you could see him lift his head up and try to peak out of the little slits.  But he could see a little and that made all the difference in the world to him.  He became his old self immediately.  He asked for things that he wanted.  I have to say one thing about the hospital; it sure can spoil a kid.  Because he knew he would get whatever he wanted.  He even got to sit on his Auntie Gima’s lap that night and put his pacifier in her Pepsi.  Pepsi is usually a no-no.  But this was different.  I just wanted him to eat and drink as much as he could.  

The 4^th day there, we put Stephen in this little wagon that they have on the children’s floor and took him cruising around the hospital grounds.  He was so excited to get out of that bed, that room.  We took him down to the cafeteria where he got a donut, and then we went out to the patio so he could get some sunshine.  He had so much fun.  He was talking and laughing.  When we went back up to the room, Uncle Alan was they’re waiting for us.  

The neurosurgeon sent one of his assistants in to see how Stephen was doing.  We told him all of the progress he had made and then I asked if I could take him home today.  He looked Stephen over and saw how well everything was going, so he said he would finish his rounds and would call and ask Dr. Manwaring if he could send Stephen home.  I was so excited.  I immediately called my husband who had to go to work.  He said to let him know as soon as we knew.  So off we went again.  Cruising up and down the hallways of the hospital.  We even went downstairs and out to the front of the hospital.  You could really feel people staring.  But I was so happy that we might be going home I didn’t even care.  

My mom and Dad called and asked us if we were hungry.  They stopped at McDonalds to get us breakfast and by the time they got there; I was signing Stephen’s discharge papers.  The timing couldn’t have been better.  We ate, I called my husband so he could meet us at the house, they gave me all of the paper work I needed, and we packed up all of our stuff and out the door we went.  Alan and Gima had a flight to go home, (New Mexico), that afternoon approximately 1:00 p.m.  Gima was happy that Stephen was doing so well, but she hoped he would be home before they left.  Well she got her wish.  Stephen and I dropped them off in front of the airport on our way home about 11:30 a.m. on Monday June 4^th.  Stephen was talking, laughing and playing.  He was so happy to be going home and you could tell.  When I got out of the car to hug and kiss Alan and Gima good-bye, Stephen started to call for them and when they leaned in the car to kiss him good-bye they both started to cry like big old babies.  It had been an emotional few days for all of us.  I think we were all crying out of relief.  So we jumped back on the freeway and as we pulled up, my parents, Jonathan and Patrick were all there waiting for us.  

Stephen started to run around like crazy.  I thought I was going to have a heart attack.  One of the things they tell you is not to let them climb and run around, because he has a head like a newborn baby.  If they only knew what they were asking.  Stephen is so strong willed and stubborn and active.  He has never been easy to keep still.  So now we were home and my job had just began.  A few other family and friends phoned to get directions to the hospital to come and see Stephen and I told them they would need to come tour house, because we were already home.  So my friends Rose and Lucy came over and Patrick’s cousin Sammy and our friend Danny came over.  

Everyone looked a little shocked at first.  But once we explained everything that had been done, they realized how good he looked.  My parents stayed until the following Friday.  When they went home, they took my 10-year-old Jonathan with them.  He went to Reno for 2 weeks and then he went to see my brother Robert and his wife Julie for a week.  

Stephen went to Dr. Manwaring on Friday June 15^th to have his staples removed.  He threw a fit.  My husband held his body and arms while I held his head.  He screamed bloody murder the entire time.  But once it was done, he was fine.  He told us he would need a second DOC band.  He gave us the prescription and told us to give him a call when we saw Dr. Joganic..  We scheduled an appointment with Dr. Joganic for Thursday July 12^th.  When we went to see him, he was very pleased at Stephen’s progress and said a second band wasn’t necessary.  I was so thrilled.  I went out of the office and called my dad at home, my mom at work, my mother in law, my husband, Dr. Manwarings office and Cranial Technologies to cancel our casting appointment.  I got in the car and drove home with the biggest smile on my face.  

We have a CT Scan scheduled for August 15^th in the morning, and then we see Dr. Manwaring that afternoon.  As long as everything goes well, we should only have to go back to the neurosurgeon 2 or 3 more times this year and then after that once a year for a few years.  So life is good and I am happy with the way everything turned out.  I couldn’t have asked for better results.  I am very thankful that I had the doctors that I had.  I trusted their word and their judgment.  They told me what was going to happen and at what point to expect what.  They were right on time with all of their comments.  They answered any and all of my questions no matter how small or stupid they might of sounded.  I feel blessed and feel this has made not only myself, by my entire family unit stronger and closer.

If anyone has any questions, please e-mail at debiromero@mindspring.com

Mommy and Stephen in Pre-op about about 9am.  Stephen is as happy as can be	Stephen 1/2 hour post-op in the PICU
Stephen 1/2 hour post-op, resting in the PICU	Stephen with his puppy "Farley" resting peacefully. One day post-op.
Stephen 1 day post-op.  Swelling is at the halfway point	Stephen's 1st "bird bath" with Mommy and Auntie Gima
Dad, Big Brother Jonathan and Stephen 1 day post-op.  Stephen's eyes are swollen completely shut, so for comfort Stephen had to be in Mommy or Daddy's arms at all times.	Mommy and Stephen 2 days post-op.  Stephen is eating his first food, manderin oranges, one of his favorite foods.  His eyes are just starting to open.
Auntie Gima and Stephen, 2 days post-op.  Stephen is dipping has pacifier into his Auntie's Pepsi.  His eyes are opening a little more.	Stephen, 3 days post-op at about 7 am.  Stephen's eyes are continuing to open and he is ready to cruise the hospital.  He is having fun and smiling again.
3 days post-op, a very relieved big brother, and a happy baby, getting ready to go home ~ just waiting for the discharge papers.

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©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001