Cooper is home!  After 12 days in the NICU, we were finally able to bring Cooper home on Tuesday.  The discharge debriefing was a reality check, where we had a final review all of the doctor's findings, his treatments, and followup care.  Needless to say, the calendar is full for his initial outpatient appointments.  We'll get through them one at a time.

Cooper's feeding schedule is every 3 hours, so we're getting used to having a baby in the house again and the related lack of sleep.  We're adjusting, but it's going well.  He continues partial oral feedings, with the remainder by feeding tube.  We also have a couple of colostomy pouch changings under our belt, as well as a feeding tube fix following an early morning blunder (by Dad) that ripped the feeding tube out of his nose.  Mom to the rescue and crisis overted. 

It has been fun to watch the girls watch Cooper and interact with him.  Tess is content with pointing at Cooper and saying "baby", while Leila prefers the hands-on approach.  Leila's motherly care knows no bounds.  With Cooper crying one late night, Leila (half-asleep) sang "Twinkle, Twinkle" in an attempt to calm him.  It worked for Tess, so why not?  Leila loves to hold and talk to Cooper, as well as offer an extra pair of hands when needed.

We've received many meals from family and friends.  We thank everyone sincerely for this, as not having a meal to worry about at the end of a long day is priceless.  All of it has been delicious!  Thank you.   

This is kind of our brief acceptance speech, as well as a brief update of how Cooper is doing.  First and foremost, we are so thankful to God for blessing us with Cooper, being by our side and his through everything so far, and giving us the strength through him to to walk alongside Cooper on this uncertain road.  The prayer and emotional support we've received from friends and family thus far has been quite overwhelming, and always uplifting.  We want to thank everyone for keeping our family in your prayers.  Please pass on our thanks to those including us in their prayers that we may not even know.  It means so much to us as we believe in and can feel the power of prayer.

Cooper is doing very  well at Spectrum NICU.  He is now off the ventilator, and they have removed his IV as well.  He is starting to make a dent in the supply of milk that Kalani has been tirelessly providing since his birth.  While most of his feeding it done through a feeding tube still, we're encouraged by his progress at oral feeding.  At this point, he still lacks the strength and stamina to effectively take a complete bottle, although he tries hard.  We're told his suck will strengthen with time and oral therapy.  Cooper now has tiny splints that were made for his hands.  Although he gets frustrated with having them on (currently 8 hours a day, with 2 hours off between), the goal is to stretch his ligaments and straighten his hands to be in line with his forearm.  Lacking the radius bone in each arm, his wrist doesn't have the base it needs to be centralized on his arm.  In the future, orthopedic surgery will help correct this to an extent.  An MRI of his head also indicated a large mass in his brain.  The neurosurgeons believe this to be cycstic at this point, but will continue to monitor his progress and will followup with a ultrasound and MRI within 3 months.  We're uncertain if this will affect his function or development at this time.  As has been the case with many of the findings, "some people live normal lives with it, and some don't."  His hearing is also still questionable at this point, as is his acute vision.  We will learn more with time and additional followup testing. 

The plan is to work up Cooper's tolerance to regular feedings of milk before we can bring him home.  Most likely, he will remain on the feeding tube while at home.  We will continue to work with him to strengthen his oral feeding abilities.  Please pray with us for his continued development toward feeding 100% orally.  Although we honestly don't feel completely prepared to have him home, we're all excited and anxious to have him join Mom, Dad and sisters soon.  Leila talks endlessly of being "two big sisters" and is ready to shower Cooper with love and everything she can do to help him.  Her unabashed love and affection toward him is a lesson for us all.  She wants more than anything to hold her baby brother, but was satisfied last night to assist the nurse with taking his temperature, blood pressure and listening to his heart through a stethoscope.  Oh, and she asked today if he'll show up in the mailbox soon.

We thank you for your prayers and will continue to keep everyone posted on Coop.



       

The Setup
We arrived at the Spectrum Health Downtown at 7:30pm Thursday (1/15/09) evening for the scheduled induction.  Things were started with a dose of Cytotech every 4 hours.  Things progressed slowly, and after 3 doses Kalani was barely 2cm.  The physician decided it was time to get things moving and, rather spontaneously, broke her water.  Pitocin followed and an epidural was ordered shortly after.  With increasing frequency and strength of contractions, nausea and vomitting commenced.  The normal for her.  Around 2pm she measured 3cm and we locked down for what we thought would be a LONG day.  With stronger contractions and the epidural tapering off, the Anesthesiologist was summoned to adjust the doseage.

The Arrival
With the nurse gone paging the Anesthesiologist, several strong contractions followed, all the while she continued with the vomitting.  While having one particularly strong contraction, Kalani had a very forceful "heave."  This was enough to do the trick, as she turned her head toward me with a shocked look.  Cooper had arrived!  With him delivered to mid-abdomen, I ran to the door and shouted for a nurse.  Within seconds the room filled with people, and the delivery was completed.  Cooper looked great and came out crying.  We were basically in shock, but Kalani handled things wonderfully, as usual.  She held him for a brief time and he was quickly cleaned up and brought up to the NICU.  We learned his measurements later, as they weren't taken initially.

Time of Delivery: 4:09pm (16:09 on 1/16/09)
Weight: 4lbs-11oz.
Length: 17.3"

The Current
Cooper has Fanconi Anemia as explained in our blog after this was diagnosed awhile back.  The physical traits of FA are still being confirmed, and the findings are still being analyzed.  In trying to keep this brief, I'll outline what we know currently.  Cooper was born without the radius bone in each of his arms.  His thumbs on both hands are also absent.  We anticipate meeting with a pediatric orthopedic surgeon to discuss possible treatment options for this condition.  He was also born with an imperforate anus.  This is a  congenital malformation in which the rectum is basically a dead-end and there is no anus.  This was the first priority to address, as his ability to feed is currently questionable, but would not be possible without an "exit" of some sort.  In the next day, much will be determined by Cooper's ability to feed normally and his ability to "suck, swallow, and breathe" at the same time.  The good news is that the imperforate anus condition has had excellent success with surgical repair.  Surgery was performed this morning and a successful colostomy was achieved in order to carry stool out of the body.  Cooper is recovering nicely from this.  This is the first step toward the correction of his colon and rectum and it's connection to his bottom.  This link below describes the process nicely.


http://www.nlm.nih.gov/medlineplus/ency/article/002926.htm  

 
Additionally, Cooper is lacking an ear canal in one ear.  A head MRI will determine if an ear drum is present.  He seems to have hearing in his other ear, but the canal is quite small.  A hearing screening will help verify this, and a ENT will look at this more closely.  His eyes are also very small.  A pediatric ophthalmologist will examine him to determine if his vision is affected by this.  An MRI will also need to be done to look more closely at inside his head, as there was some initial findings of some underdevelopment of a portion of his brain. 

OK, some positive news now.  First, he is pretty darn cute!  His heart, kidneys and initial bloodwork all look normal.  He is also able to breathe without assistance.  These are also areas that can be affected by FA.  We are thankful for this, as we have learned to find joy with each small victory and take things one step at a time. 

Please continue to keep Cooper in your prayers, as well as strength for us as our family travels this uncertain road.

Cast your burden upon the Lord and He will sustain you: He will never allow the righteous to be shaken.
Psalm 55:22

The time is finally here for us to have this baby.  We will be going in Friday, January 16th to be induced.  While I will be glad for the physical aspects of being pregnant to be over we are anxious with all of the uncertainty surrounding the birth.  In our last several appointments the baby has fallen off of the growth charts and the doctors have told us to be prepared for any outcome.  While this is difficult we are ready to have this part of the journey over and to move on the next part, whatever that might be.  This is will be a particularly difficult time ahead for us.  Please keep our family in your prayers, that we might have the strength to get through this.  We really appreciate all of the support and understanding everyone has shown us.