Simon Peters' website

For nothing will be impossible with God Luke 1:37

How our journey began...

Simon is our 5th child.  He was due on December 8, 2004.  His story began when I went for my routine ultrasound 20 weeks into my pregnancy.  During the ultrasound the tech noticed 3 areas of concern: short long bones, a cleft lip and enlarged brain ventricles.  After my ob told us this (scary!), we decided to have an amnio done.  The FISH test was negative for trisomies 13, 18 & 21, so we thought we were of the hook.  When the full results of the amnio came in, it indicated a mosaicism, which the lab thought involved chromsome 12.   Results were inconclusive so the cells were shipped to Mayo Clinic.  They verified that there were 2 extra copies of the short arm of chromosome 12, which means our baby had Pallister-Killian Syndrome, which is quite rare.  Finding out this diagnosis was devastating.  Who believes it will happen to them?  How do you tell people?  Thankfully I had Jim to keep me calm.  We had no idea what the future would hold for our baby, so we tried not to worry.  Two things kept me sane during this time, prayer and faith in God and I was fortunate to find an on-line support group with some wonderful people who were more than glad to share information and answer my questions.

The pregnancy was very stressful, I was off work from Aug to Dec.  Medically, though, both me and the baby were doing fine.  It was the not knowing.  We did end up having 2 more ultrasounds and by the 3rd one, we were sure of the cleft lip and short bones, but the brain ventricles had moved into the normal range.  I had a c-section planned for Dec 6 (due to having had one previously).  We decided to deliver at our local hospital as medically there appeared no need for a NICU.

December 2, 2004.  I stopped feeling movement from the baby, so I ended up going into the hospital for monitoring.  The baby's heartbeat seemed steady, but I wasn't feeling it move (we still didn't know boy or girl!).  The doc decided to give me my c-section early.  Simon Christopher Peters was born at 1:46 pm on Friday December 3, 2004.  He was 8 lbs 12 oz and 19 1/2 inches long.  He came out crying and with APGARS of 7 and 8.  However he was having trouble maintaining his oxygen levels so he went into an oxygen tent. He also had a heart murmur that healed itself by that night.   Later that evening, his doctor decided to send him to a hospital with a NICU.


Once at Bronson,  Simon started having bouts of apnea.  He would just about stop breathing for 1-2 minutes and then come out of it.  They gave him an EEG which was "not quite normal" but also didn't show any seizure activity.  As a precaution he was started on Phenobarbital.  He also was given a feeding tube, we assume, because of the cleft lip.  By Sunday, his apnea episodes were gone and he was off all monitors by Tuesday.  He remained slightly unable to maintain his body temp and kept his feeding tube, but other than that, he was ready to go home!  All in all, Simon stayed for 6 days.

Simon comes home...

Finally getting Simon home was nice.  He still had his feeding tube but was sleeping great due to the phenobarb.  Simon's brother and sisters really love him.  They think he's very cute and don't seem to notice the cleft lip.  We had visting nurse services for a few weeks in December.  He also visited his family doctor.  Simon was 9 lb 3 oz on Dec 29, so he was gaining well.



On January 5 we got started with an evaluation with Early On.  Simon qualfies for special ed, physical therapy and occupational therapy.  The PT told us that his low muscle tone was very mild.  He's already lifting his head and turning it side-side while on his tummy. 

January 6 was Simon's appt with the plastic surgeon at University of Michigan Children's Hospital.  His surgery is scheduled for Feb 25.  They are going to repair the lip, but won't be repairing the gumline until he's 8-10 years old.  That was a surprise to us!  He will stay overnight and have his stitches in about 1 week.

We also removed his feeding tube that day.  A feeding specialist at U of M indicated physically there was no need for it.  Simon has a strong suck and we are using the Mead Johnson nursers which are appropriate for a cleft, so we decided to stop the tube feeding.  Simon eats about 3 1/2 oz every 3-4 hours.  We hope he'll continue gaining weight so he can keep it out!  Also, we're weaning him off the phenobarb--we're down to 2 cc's from 5 cc's each day.  He will be off it in a week or so, assuming we don't see any relapses in the apnea.


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A prayer

Lord,

Please help me remember that Your love is always greater than my disappointments and Your plans for my life are always better than my dreams.

Amen.

WHAT TO GIVE UP . . .


Give up complaining. . . . . . . .focus on gratitude.
Give up pessimism. . . . . . . . . become an optimist.
Give up harsh judgments . . .think kindly thoughts.
Give up worry. . . . . . . . . . . . . trust Divine Providence.
Give up discouragement. . . . .be full of hope.
Give up bitterness. . . . . . . . . . turn to forgiveness.
Give up hatred. . . . . . . . . . . . . return good for evil.
Give up negativism . . . . . . . . .be positive.
Give up anger. . . . . . . . . . . . . .be more patient.
Give up pettiness. . . . . . . . . . .become mature.
Give up gloom. . . . . . . . . . . . . .enjoy the beauty that is all                                                      around you.
Give up jealousy. . . . . . . . . . . .pray for trust.
Give up gossiping. . . . . . . . . . .control your tongue.
Give up sin. . . . . . . . . . . . . . . . turn to virtue.
Give up giving up. . . . . . . . . . . hang in there!