May 23, 2006

Dear Friends & Family,

Casey succeeded in making his case to go home—he slept well last night, and was giving out huge smiles and uninterpretable pieces of conversation to doctors and nurses this morning.  We are home, his staples and bandage are off, and now he has a silver-dollar size semi-circular set of stitches on the front part of the right side of his head.

Below is the message I sent out last night, which didn’t make it to everyone.  Thanks to the Allgire family for getting it out as much as possible.

We appreciate so much all of your prayers and concern.  Please pray for Casey’s continued good health and brain development, and for no post-surgery complications.  And pray for Lisa, who has come down with quite a cold.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Family and Friends,

Thank you for those of you who have prayed for Casey in the last few days.  We wanted to give you an update on what’s happening with him.

The Short Simple Version for those who don’t like to read a lot:

         Casey will almost certainly be having at least one surgery on his brain ventricles in the next month.  Please pray for him and the whole family.

The Long Complicated Version for those who like to read about neurosurgery in your spare time:

         For some time now, Casey has had a larger-than-normal head.  Although a larger-than-normal head is kind of a family trait on Daddy’s side, ultrasounds of Casey’s head have shown that his ventricles (the spaces between the “gray matter” through which fluid passes) are fairly large.  The cause of this is probably the meningitis which he dealt with in mid-November.  The potential problem with this is that dangerously large ventricles—a condition called hydrocephalus—exert pressure on the brain and can cause seizures, a truly oversized head, and various long-term brain issues that are none too good.

In the two-plus months between Casey’s MRI (on February 28) and yesterday’s CAT scan, the size of his ventricles has progressed too fast, to the point where it is at a clearly abnormal (though not yet dangerous) level.  We met with a neurosurgeon today, who showed us the pictures and who explained to us what our options are.  First and foremost, doing nothing is no longer an option.

The most traditional option for someone with hydrocephalus would be to put in a shunt, a fairly safe and routine but hassle-intensive procedure.  A shunt involves placing a tube that runs under Casey’s skin from his brain ventricles down to his stomach.  Through valves and such that are beyond my understanding, the shunt would regulate the excess fluid that needs to come off of the brain.  This is a permanent fixture, and relatively soon it would be unnoticeable—the results in terms of Casey’s IQ, brain function and appearance should be very good.  In an ideal world, it would never have to be tampered with again, and when he’s in his 80’s maybe he would tell one of his great-grandkids, “Hey, I have this tube that runs from my brain to my stomach,” and they would think that he was just kidding.  In the real world, shunts very commonly cause infections, or malfunction, and need to be replaced or repaired surgically quite often.  In fact, at Casey’s age a follow-up surgery within a year would be unfortunate but very likely.  The neurosurgeon told us that the rule of thumb is that in the first seven post-shunt years, 70% require additional surgery.  It is our desire that Casey would not require a shunt, but if he does need one, we are reconciled to the fact that that’s just what needs to happen.

A less traditional and less-likely-to-be-successful-for-Casey option would be what’s called a third ventriculostomy (this is where it gets complicated:  if you need to get off the ride at this point and just stick with the short simple version, there’s no shame in that).  Here’s the simplest layman’s version that I can come up with.  There are two basic causes of enlarged ventricles:  1) The most common is that for whatever reason absorption just isn’t happening right—a shunt fixes this very general problem by re-routing the fluid somewhere else.  2) The less common cause is that fluid is blocked at the bottom of the third ventricle as it drains into the fourth ventricle (see attached diagram)—the procedure in which a small surgical slit widens the opening in the third ventricle is called a “third ventriculostomy”.  It is a one-time low-risk surgical procedure that works very well only if blocked fluid is the cause of the problem.  And if it turns out that blocked fluid was not the problem at all, then the very same incision is re-opened and a shunt is put in.  The chance that Casey’s problem is blocked fluid is about 50%.

Another MRI will be done on Casey in the next week or two that may or may not shed some light on whether there is blocked fluid.  Regardless, he will probably undergo the third ventriculostomy as the first step, with the full expectation that it will not work, and that he will need to have a shunt procedure anywhere between a week and a few months later.  (And if it turned out that the third ventriculostomy took care of the problem and he never needed a shunt at all, we would just be pleasantly surprised.)

Here’s what you can pray for…

            --Casey’s short- and long-term brain function and health

            --A safe and slow pace in his increasing ventricles that won’t cause him pain or pressure or seizures while these options are worked out

            --Wisdom and peace and courage for his parents (as with almost every other aspect of parenting, this involves decisions and actions today that will have repercussions for our child for years to come)

            --Continued health, growth and development for the rest of the family, and the ability to juggle home and work and hospital without neglecting anyone or anything

            --Wisdom and skill for his doctors, nurses, surgeons, radiologists and all other medical caregivers that will treat him

In terms of asking for prayer, we realize that we are the obnoxious family that continually tries to shove their way to the front of everyone’s “prayer list”.  But as long as it means that you might be lifting up our little ones in prayer, we’ll probably keep doing it.

Thanks for letting us.

We love and appreciate you and will try to keep you posted as we learn of any new news.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

P.S. For more information on this, a few good links are…

http://www.hydrocephalus.org/facts/

http://www.trejos.com/Trejos/Hydrocephalus.stm

http://www.upstate.edu/neurosurgery/resources/med_students/3v/#anchor175334

(backyard with the family limo; frontyard with Ashley in her Easter dress)

(l-r:  Ashley, Benjamin, Casey, Danielle)

(shadow box for Emily)

Dear Family & Friends,

Half of our family is officially six months old today—hard to believe that they could already be that old, but also hard to believe that November 4 was only six months ago (seems like several lifetimes ago!).  The babies are doing well, and are all three sleeping through the night (midnight till 7:30ish), which is a huge blessing.  They got weighed a few days ago, and we found that Benjamin weighs 11 lb. 10 oz., that Casey actually caught up with him and weighs 11 lb. 10 oz., but that Danielle has conquered the boys to become the undisputed heavyweight champion at 11 lb. 14 oz.!!!  Please pray specifically for Casey, whose head circumference is pretty big and will need a CT scan on Monday to determine whether or not he might need a shunt.  The babies are generally in good moods and lots of fun.  RSV season is over, and after their six-month shots next week we will start getting them out among the people, which is really exciting.

We had Emily’s memorial service on Saturday at the church.  Over 100 people turned out, which meant so much to us (especially on a Saturday during a busy time of year), and it turned out to be a really nice service.  Everyone who spoke or sang in the service had actually met Emily during her nineteen days of life, and we thought that it was an honor to her and a testimony to God’s goodness and love for all of His children.  We invite you to take a listen to the service, which is on Emily’s page of our website www.expandingrobertses.com , and can be accessed directly at http://www.expandingrobertses.com/emily's%20page.htm#Emily_Anne_Roberts_Memorial_Service--April_29,_2006_in_Savannah,_Georgia .  If you would like to hear an update on the babies and see some recent pictures of them, the part of the service titled “Emily’s siblings,” which Lisa did, contains recent pictures as well as Lisa’s audio account of how they’re each doing.

At the service, we unveiled the beginning of the project that we have been working on in Emily’s memory.  It is called Project Seahorse, and is a fairly simple plan to tangibly encourage families with a premature baby right as they are starting their NICU experience.  The website for it is www.projectseahorse.net, which describes what it will entail, the meaning of the name, and more.  We are in the process of incorporating it as a not-for-profit organization with tax-exempt status, and will be accepting contributions.  Two things would really, really help us at this point.  First, if you get a chance to look at the site and give feedback, we would like to know how clearly we’ve communicated the concept and the plan, and what we could do to make it as understandable and simple as possible.  Second, if you have had a premature baby at any time, would you be willing to fill out the form in which you can submit your child’s story?  (It would help us to start collecting stories, and it would help us to see how well the form itself works.)

We have no way of knowing who gave toward the quads’ account that we set up back in November, but we thank those of you that did from the bottom of our hearts, and hope that you know that—as advertised—half of those generous gifts have gone directly to the start-up costs of Project Seahorse.

Our big girl will be two years old one week from today, which means that we will no longer be able to shock people by saying, “We have four children under the age of two.”  Ashley continues to amaze us with how well she has dealt with the babies, and her Easter egg hunt videos indicate that she is pretty hilarious at this stage in her life too…  http://www.expandingrobertses.com/ashley%20easter%20egg%20hunt%201.wmv & http://www.expandingrobertses.com/ashley%20easter%20egg%20hunt%202.wmv

Lisa was able to visit both her regular doctor and a cardiologist in the past two weeks.  Both expressed amazement upon seeing her charts at how critically sick she was after delivering the babies, and both very firmly maintained that she would not likely survive another pregnancy (even a “normal” one).  Lest there was any question in your mind, we are definitely done having children.  Lisa wins my vote this Mother’s Day for “mother of the century”—in addition to all she went through to get them here, she does an incredible round-the-clock full-time job of caring for them, with much helplovesupportencouragementfoodprayeranythingweneed from all kinds of wonderful people all week long.

Thank you for being among them.  We are grateful for you…

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle Roberts

P.S.  The shadow box was put together by Lisa, and is from www.maxisminis.com, which we were very pleased with.

Dear Family & Friends,

We wanted to give you an update on the family, and tell you Happy Easter!  We are reminded this year of how important it is to us that we believe that the tomb is empty—to quote the apostle Paul:  “If Christ has not been raised,” then we “are to be pitied more than all men.”  On the contrary, the celebration of Easter, for those who have investigated its authenticity, is just that—a celebration!

We mentioned in our last update that Emily’s memorial service will be held at Savannah Christian Church on Saturday, April 29^th at 10:00 a.m.  Just to let you know, for those of you who are considering coming, the service should last only about an hour, it will be very casual, and we welcome you to bring children if you would consider it appropriate for them.  We are really looking forward to this weekend.

As for the babies…where do we start?  They are all doing magnificently well, yet they are all (including Ashley) hopefully emerging on the other side of a stomach virus of some kind, which happened to include diarrhea and vomiting.  This has meant a lot of laundry, and a lot of waterproofing, and some concern.  We were especially concerned about Casey, whose stomach issues returned (maybe as part of this virus, maybe not), to the point where he only gained 3 oz. in 2 weeks, and we were concerned that there might be a need for a feeding tube in his stomach.  As a last resort, Dr. Seibert and Casey’s pediatric gastroenterologist put him on the “end of the line” in formulas, which is called Elecare (our conclusion is that Ele is an abbreviation for Elevated Pricetag).  At any rate, after a week of being on it, even with plenty of diarrhea and vomiting, Casey gained an entire pound!!!  He is now at 10 lb. 8 oz., and we assume that Danielle and Benjamin (who haven’t had any appointments in a while and haven’t been weighed officially) are bigger than that.  They have come a long way since their under-2-lb. days.

In terms of progress, they are all sleeping incredibly well!!!  Danielle has not dropped her 4:00 a.m. feeding, but the boys are sleeping through the night pretty consistently, and even Danielle wakes up, eats a little bit, and goes right back to sleep.  Casey rolled over (from tummy to back) for the first time this past week, and Benjamin even broke new ground by rolling over the other direction, from back to tummy.  Danielle has not rolled over, but she has shown really good signs in terms of her motion and general muscle tone.  She will be evaluated regularly through a program called Babies Can’t Wait (which, ironically, called to postpone her first appointment), and we are very optimistic about how well she will do.  The most exciting piece of progress is that all of the babies, and Danielle now in particular, are regularly giving out huge smiles.  The website (www.expandingrobertses.com) is down temporarily, but when it’s up, there are three new videos at the bottom of the “Kid Videos” page.  The one called “Miles of Smiles” will give you an explanation of why we’re able to endure the occasional moments of madness in our house.

Ashley is getting more and more fun, and funny.  We absolutely hate that she can’t see everyone at church yet, but she has loved every minute of attention that she’s gotten from the zillions of wonderful volunteers that have come to help us, as well as Jim and Patricia Thomas and now Linda Doyal, who have each come from a long way to spend a whole week with us.  Many of these helpers have found themselves held hostage by Ashley’s demands that they take her for a walk, “p’ay Legos,” color with her, do sidewalk chalk drawings, etc.  When Ashley was asked the other day in her high chair, “Did you go potty?” her reply was, “No. Just noisin’.”  She refers to Jennifer Nagy as “Jennifer Noogie.”  And her term for popcorn kernels is “acorns.”  Her big chore these days is to take empty baby bottles and reach way up high to drop them into the sink—occasionally, she beats us to the punch by telling herself, “Thank you, helper.”  She will either talk on the phone without listening, or listen to the phone without talking—the only exception is if you sing to her one of the songs in her repertoire, in which case she’ll sing along.  “She completes the sentence “Ashley is a…” with the words “superstar,” “big girl,” “artist,” and “helper.”  And she completes the sentence “Ashley makes Daddy…” with the words “happy and proud.”  Ashley is beautiful and smart like her mother, and funny and quirky like…other relatives of hers.

For those of you who had time and interest to keep reading this far—one favor to ask:  The Smiths are a couple close to Macon, Georgia who were expecting quintuplets this spring.  In early March, one of their little girls had to be delivered at a point that was too early to survive.  On March 22, at a point between 26 and 27 weeks (like us), their four remaining babies were born at weights almost identical to our kids’ weights (1 lb. 15 oz., 1 lb. 12 oz., 1 lb. 7 oz., and 1 lb. 7 oz.).  They then had to say goodbye to three of them on the 26^th, 29^th and 31^st.  Right now, Kaylee is their remaining baby, who was one of the ones born at 1 lb. 7 oz.  Please pray for her to survive and to thrive, and if you would consider doing this, they have a prayer pager, which works like this:  478-736-0705  Dial the number, Press "7", Press #, Hang up and pray !  The Smith family are a reminder to us of how scary of a time we went through, but also how huge of a difference it makes to know that people of faith were lifting us up in prayer at any given moment.

Thank you again for being here for us in that way, even now.  May God bless your Easter celebration…

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Family & Friends,

We realized we hadn’t sent out an update about the gang for awhile, and—again—hadn’t had much time for any personal correspondence.  Here’s what’s happening…

First and foremost, we have finally set a time and date for Emily’s memorial service.  It will take place at Savannah Christian Church on Saturday morning, April 29 at 10:00 a.m. (located at 55 Al Henderson Boulevard).  For many months now, we’ve longed for the chance to invite everyone to join us in celebrating Emily, and making sense of her short life and her death by looking at how Jesus felt about children and at what He said about the life after this one.  We will also be ready at that time to unveil the project that we are undertaking in Emily’s memory that we have been working on.  You do not have to RSVP, and we have no expectations about how many will or won’t attend; everyone is invited, no matter who you are, where you live, whether you know us personally, etc.  Unfortunately, the babies will not be able to attend and still have to stay away from the general public (probably for several weeks into May because of a late RSV season). 

The babies all seem to be doing very well.  In the last three days, Casey has not thrown up, thanks to:  a different formula, thickener in his formula, less formula at each sitting, medicine, prayer, and a great pediatrician who’s on top of it all!  Even while he was throwing up a lot of food several times daily, he still seemed to be gaining weight, and there were no signs of a return of his NEC issue, which was our main concern.  Thanks to all of you who sent us different accounts of your own children or acquaintances who threw up a lot—that made us feel like we are not the first or the last to deal with this.

At the last weigh-in, Benjamin was 10 lb. 4 oz., Casey was 9 lb. 4 oz., and Danielle was somewhere in between (sorry, can’t remember her exact weight).  Danielle has joined the brothers with occasional smiles and a lot more eye contact since last writing.

The biggest breakthrough in the last few days is that we began to work them into an eat-play-sleep cycle, as we did with big sister Ashley back in ’04.  The book “On Becoming Babywise” details this (also has gone by the name “Growing Kids God’s Way” previously), and we have found that it allows the babies to find a very natural rhythm and routine to their day in which they thrive.  The best part of this program is that babies begin to sleep through the night at a very early age (our kids are now just under 2 months “adjusted age”); the hard part is that it requires letting the babies “cry it out” in their cribs for a little while occasionally until they figure out the cycle (provided that the crying is not a sign of pain or distress, which parents should be able to discern).  At any rate, the last three nights (right as we began trying this) they have all seemed like different babies and have slept wonderfully at night for large blocks of time, with the boys even sleeping through their 4 a.m. feeding last night, which is a good good thing.

Ashley and Lisa and I are doing pretty well overall.  Lest you think that life is perfect in our house, I have placed a video on our website (www.expandingrobertses.com), which I’ve titled “Peace, then Chaos,” so that you can visualize our ups and downs (btw, Casey is in the middle).  It will take a while to load, but you can see it by clicking here:  http://www.expandingrobertses.com/peace%20then%20chaos.wmv

We are again indebted to many, many wonderful friends and family and church family who have given us hands-on assistance, even at very odd hours in several instances.  Lisa’s mom was here with us last week, and now our wonderful friends Jim and Patricia Thomas (formerly from Ohio, now live in Evansville, Indiana) are here with us this week.  (With the Thomases driving to see us in Arizona in December and now driving here to Georgia, we feel personally responsible for how much of the United States they’ve been able to see in the last six months!).  Our friend Jody Blazer from church helps with the midnight feeding every night of the week—amazing!  Thanks to all of you who have helped us in any way, and particularly just through your prayers and interest in us.

Have a great April and celebration of Easter…

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

(l-r:  Benjamin's smile, Casey's smile)

(the line-up; [clockwise from top left] Lisa's mom Patti with Benjamin, Phil's mom Donna with Danielle, Phil's dad David with Casey, Phil, Ashley, Lisa)

Dear Family & Friends,

Good morning—it’s 5:30, and our house is very quiet…at this particular moment.  We all seem to be doing well, and the last two nights the babies have taken it fairly easy on us.  Please don’t take that to mean that we ever have any moments of boredom.

All three grandparents were with us this weekend, and helped out immensely and enjoyed the time with the babies.  Lisa’s mom is back at work and will return in a couple of weeks.  My parents are still here—my Dad teaches, and it’s his spring break this week.  All in all, my mom will be with us for three weeks, and by the end of that time should be completely unable to sleep through the night.  We have had numerous other helpers, and friends who have brought meals, and we are extremely extremely grateful for all the help we’ve received, which has been a Godsend, and hopefully kinda fun for the helpers too!

Yesterday was my first day back at the office (I’m an associate pastor—Pastor of Spiritual Formation is my new title—at Savannah Christian Church).  The leaders at Savannah Christian Church have been incredibly incredibly incredibly gracious to us in allowing me the flexibility to temporarily relocate and to do whatever it takes to take care of our family during this bizarre year.  In addition, church members have been relentless in pouring out love and kindness and hands-on help to us in a very generous way.  We are glad to be back, and could never possibly repay the trust and kindness extended to us.

Last Friday, Benjamin weighed 9 lb. 4 oz., Danielle weighed 8 lb. 1 oz., and Casey weighed 7 lb. 15 oz.  They are all now approximately five times their birth size.  Benjamin gives out big grins, Casey (like his big sister before him) is in love with the ceiling fan, and Danielle loves to cuddle.  Our day right now consists of an 8 a.m. change/feeding, then 11 a.m., 2 p.m., 5 p.m., 8 p.m., 12 a.m., and 4 a.m. (a total of seven feedings).  Soon we hope to work everyone down to six bigger feedings, and drop the middle-of-the-night feeding, but we’re probably still a couple of weeks away.  We have found that these babies are often hard to burp, and that with their gas issues they really can’t be overburped either.  Ashley can’t keep their names straight—please don’t be worried if you can’t either.

This past Thursday we took our first family field trip (and probably the last for a long while too) to get everyone out to Emily’s gravesite.  Ashley had a great time riding in the back of the van with Grandma, and the babies literally did not make a sound the whole trip, which lasted about two hours from start to finish.  It was somewhat emotional, but very special to be able to bring Mommy and Emily’s siblings to the place where her body is laid.  We look forward to telling the babies someday about the sister that they’ll have the opportunity to know once again.  We have still not set a date or place for Emily’s memorial service, but are still planning on doing that, probably sometime within the next month.

There are some short videos (don’t be fooled; they take FOREVER to load) that we’ve included on the website (www.expandingrobertses.com).  If you only have time to watch one, you should probably watch http://www.expandingrobertses.com/rollover%20minute.wmv, which will reveal the identity of the baby in our family who is already able to roll over.  The others include Casey’s discharge http://www.expandingrobertses.com/casey%20discharged.wmv , moving babies http://www.expandingrobertses.com/objects%20in%20motion.wmv , a very short documentary of normal life in the Roberts house http://www.expandingrobertses.com/normal%20life.wmv and baby swings and rocking chair going crazy http://www.expandingrobertses.com/rhythm.wmv

Thank you so much for all of your prayers and encouragement and kindness on behalf of our children.  We are grateful.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey and Danielle 

(Ashley prays for her sanity and inner strength; pre-discharge Casey)

Dear Family & Friends,

Back on October 28, Lisa went to a routine prenatal appointment that by the end of the day turned into the beginning of a hospital stay.

Yesterday, on February 28, exactly four months later, Casey Philip Roberts was our last family member to be discharged from hospitalization.

We are all home.  Finally!

After a kind of cranky evening, everyone has settled down.  It’s not long past midnight, and it’s officially March, and at this particular moment it’s coming in like a lamb.

Pray that it will stay like a lamb.

Thanks for all of your prayers and encouragement that have helped see us through to this new day in our journey.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

P.S. We will work on getting some good group pictures in the next few days.

P.P.S. Some celebration events that have already happened:  we have both removed our hospital bracelets that have become such a normal part of our arms; I finally turned my cell phone permanently back to “silent/vibrate,” now that we no longer need to be on high alert for traumatic middle-of-the-night calls from the NICU; we’ve decided to budget less money for gas, since we’re going to cut out the 3+ trips to the hospital per day; I shaved.