(Benjamin's last hospitalized feeding; the home reading group)

(Benjamin hangs out, and gets watched over)

(Casey rears his head looking for food, and finds himself plugged up by an anteater)

(Danielle expresses her opinion about Benjamin leaving her, and looks pretty)

Dear Family & Friends,

The latest here from us…

Benjamin is doing well at home.  We are having fun with him, losing sleep because of him (although not too much!), and nervous thinking about doubling and tripling the care we’re giving to him.  Most of all, it’s just wonderful to have a “new” baby in the house, and we are reminded that—when all the other craziness is forgotten—this is exactly what we prayed for a few years ago.  Benjamin passed his first pediatrician appointment, and now weighs 8 lb. 3 oz.  His thickened food makes for longer feeding times, and we’ve found that thickened food also yields thickened diapers.  I’ve nicknamed Benjamin Harry Houdini, because he is quite a squirmer and can wiggle his way out of any swaddle (and probably strait-jacket too), and has never worn a sock for longer than about ten seconds.

Danielle had another better eye appointment!  It wasn’t perfect, but the doctors are convinced that she is on a slow track back to being just fine with her ROP, and they don’t believe that she will need surgery.  She is scheduled for discharge late this afternoon.  How exciting!  How scary!  She is 6 lb. 10 oz.

Casey has slowly re-started his feeds.  He currently receives 11 ccs of milk every 3 hours.  Twice a day, that amount is increased by 2 ccs, and he is being monitored closely and is so far doing well.  He is working his way back up to full feeds (about 50 ccs for him), and some stops and restarts are not unexpected.  He is doing well, kind of cranky but consolable, which is attributed to him being hungry for real food (I summed it up this way the other day:  How would you feel if for two weeks you got all of your meals through your foot??? [his i.v. is in his foot]).  Casey weighs 7 lb. 1 oz.

Ashley is enjoying Benjamin, likes to touch him, but is still a little cautious, and at other times a little bit oblivious to what the word “gentle” means.  We are trying to teach her to distinguish that some of Benjamin’s things are for babies, and not for big girls.  So far, Ashley has been doing a good job of being a big girl and a big sister, especially considering that she is still so much just a baby herself.  Yesterday, I dragged the trash bag with her dirty diapers out to the trash can, and thought, “Man, it seems like I was taking one of these out there just the other day.”  Suddenly it hit me that our diaper output just doubled within the last week, and then the song ‘We’ve Only Just Begun” began to run through my head in a continuous loop.  Ashley has mimicked Daddy’s habit of referring to Benjamin as “buddy-buddy.”

Lisa is doing well, getting sleep when she can, and working very hard.  Thus far, the babies have been totally on breastmilk rather than formula, which is due to Lisa’s relentless willingness to be up at many hours of the day and night getting that bottled up for them.  I am in awe of her dedication.  She is struggling with whether or not she will need to discontinue that course once the babies are all home—either way, she has given them an amazing gift, and a huge boost during their delicate tiny early days.

Oh, one more thing.  We are once again talking about a medical transport back to Savannah, possibly as early as (gulp) Thursday.  Casey would get transported, while Danielle and Lisa would ride as passengers on his jet, and then I would take Ashley and Benjamin and a gullible friend on the airline ride of our lives.  We have gotten our hopes up too many times to get too excited at this particular moment, but it’s probably more probable to happen this time than the other times.  We should know something definite today.  If we really are evacuating within 48 hours, you will probably not hear from us again for a little while.  Enjoy the break.  We will try to keep you posted through a third party.

Please pray for us.  We are currently juggling everything okay, thanks to many wonderful people who have helped us and lifted us up.  Even when it gets a little hairy, we know that we have been taken care of, and that we will be.  God really is good, and we are so grateful for the way that He has worked in the lives of our little ones, and even in us.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Friends and Family,

We are excited—no, rather, exhilarated—no, rather, exhausted—to tell you that one of the Roberts babies is on the loose!

At 5:30 p.m. Arizona time on Friday, we brought home Mr. Benjamin Ronald Roberts, after 105 days of hospitalization.  Phoenix traffic prevented the ride home from being overly fast, and the almost-8-pound little boy was greeted by his excited sister when he arrived home, as well as our friend Donita Evans (one of the Children’s Ministers at FCC), who watched Ashley during the afternoon.  Almost twelve hours later, Benjamin has taken three good feedings and seems to be sleeping fairly well.  Some videos of this major media event are linked below…

http://www.expandingrobertses.com/benjamin%20flaunts%20his%20discharge%20orders.wmv

http://www.expandingrobertses.com/benjamin%20goes%20wireless.wmv

http://www.expandingrobertses.com/benjamin%20carseat%20progress%20and%20peptalk%20with%20casey.wmv

http://www.expandingrobertses.com/ashley%20welcomes%20little%20brother%20benjamin.wmv

http://www.expandingrobertses.com/mommy%20(and%20donita)%20prepare%20benjamin%20for%20night-night%20number%20one.wmv

We had the option to spring Danielle loose yesterday as well, but opted to keep her in over the weekend until we are sure that she will not require eye surgery.  If we were to discharge her and then readmit her for eye surgery, her post-op recovery would take place in another area of the hospital (where RSV and other fun diseases are more likely to be roaming around).  Please continue to pray that her eyes will show an obvious resolution of the ROP problem by Monday.

Casey will hopefully be slowly reintroduced to feedings, starting this morning, if his x-ray looks good.  Please pray for that process to be smoother and faster than anticipated.

We are so grateful for your prayers, and so excited that we can share our news with you and invite you to rejoice with us!!!

In Christ,

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

P.S. Don’t forget to pray for sleep-deprived parents too!

Dear Friends & Family,

Just wanted to give you a quick update on Danielle…

Lisa called from the hospital to say that Dr. North (Danielle’s ophthalmologist) checked her eyes this morning, and things looked like they might be improving a little—enough that he is willing to check her out again on Monday in the hopes that they are resolving themselves and won’t require surgery, but not enough for him to promise that she still wouldn’t require surgery then.  We don’t know what Danielle’s neonatologist will say about this—maybe she’ll want to keep her admitted through the weekend until her appointment—but it’s very possible that Danielle could get discharged as early as (gulp) today, since the potential surgery today was the only thing really keeping her there (if she were discharged today or tomorrow, we would need to bring her in for an outpatient eye appointment on Monday).

Thank you for your prayers.  Most of all, continue to pray that Danielle’s eyes are completely resolving this ROP on their own.  We know that God is in control of all of the details of everything that these babies (and their parents) are going through!

Nothing else new to report.  Oh, except that we put up a video of Ashley’s Valentine’s Day meeting with Benjamin and Danielle.  Click here and wait a while for it to load if you wanna see it… http://www.expandingrobertses.com/the%20big%20meeting%20of%20ashley%20with%20benjamin%20and%20danielle.wmv

We love and appreciate all of you…

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Friends & Family,

Here’s the latest as we head into the second half of February…

There is still no hospital bedspace in Savannah, which means that we can’t get back to Georgia right now.  However, something else came up which would delay our return anyway:  All three of the kids are checked regularly for ROP (retinopathy of prematurity), an eye vessel formation issue which could potentially detach the retina.  The boys’ look okay, but Danielle is right on the verge of needing surgery to correct her ROP, and will very likely have this surgery on Thursday unless it should resolve itself before then, which is exactly what we’d like you to pray for.  The surgery is routine, laser, and 90% effective in stopping the retina from detaching, but we would just rather not mess with surgery at all.  If things start moving in the right direction by Thursday and surgery is avoided, the doctor will still want to see her in a week before he would recommend any altitude changes for her; and if she does have the surgery, he would want to see her for a follow-up appointment next week before allowing her to fly.

The great news with Danielle is that she has been weaned off of oxygen help altogether, and has gone for over 48 hours without needing her nasal prongs.  This would be a great answer to prayer if she didn’t come home with an oxygen tank.  Danielle weighed 6 lb. 5 oz. a couple of days ago.

Casey is still doing better, and will probably start milk/formula feeding again this weekend.  His tummy is still a little gassy, and he’s restless a lot (because he’s hungry for real food, most likely), but overall everyone seems pleased with how good he looks and acts.  Casey weighed 6 lb. 12 oz. recently.

The speech therapist recommended that a thickener be added to Benjamin’s feedings for a 48-hour period, to see if the consistency change will help him learn to eat better.  After a day and a half of this, he has eaten al of his feedings without falling asleep.  This may be the silver bullet that allows him to finally get discharged.  Benjamin weighed 7 lb. 10 oz. most recently.

My main Valentine’s Day gift to Lisa was arranging to have Benjamin and Danielle take a ride in their stroller (yes, a real non-hospital stroller) out to the hospital playground, where they could enjoy a few minutes of fresh air and an encounter with Ashley.  Ashley couldn’t touch them, but could look at them from a couple of feet away; it was her first real face-to-face encounter with them, and she definitely enjoyed seeing them, but was slightly more interested in the cool, colorful Children’s Hospital playground atmosphere around her.  Danielle and Benjamin have a new video on our website, which is www.expandingrobertses.com; the video can be accessed directly by clicking here:  http://www.expandingrobertses.com/shocking%20headturning%20video%20of%20benjamin%20and%20danielle.wmv .  It is titled “shocking, head-turning video” for a reason, and carries with it a parental warning due to some violent head-butting.

Even though we feel like we’ve packed and unpacked everything several times in the last couple of weeks, and even though it seems like we’re in a two-steps-forward/two-steps-back mode right now, we are reminded daily of how blessed we are to be the parents of these little ones, and how blessed we are to have landed here in Phoenix during our time away from home.  Our church family in Savannah has been incredible to us while we’ve been gone (work days in our house, cleaning up our vehicles, and much much more); as if that weren’t enough, the church family at First Christian here in Phoenix has been incredibly gracious to us too.  The first week that we got here, Mark Jones, the leader of a small group, stopped by to greet us and invite us to their group and to tell us that their group had chosen to adopt us while we were here.  In the five months since then, we’ve been able to be involved with the group sporadically at best, but have benefited over and over again from their graciousness and follow-up.  This past Sunday they had a dinner that we were able to attend, which ended with them praying for us and giving us cards and gift certificates that they had gotten for us.  In addition to this group (and not to mention the house that we continue to occupy), first choir members and then a group of regular volunteers have provided meals for us, and lots of encouragement, three times a week since we landed here.  We truly don’t know how we would have gotten by without this church, and we hope that we’ll someday find ourselves a little more on the giving end of that kind of hospitality.  Thank you, Savannah Christian Church and First Christian Church of Phoenix!

Thank you for your prayers for our family.  We are hopelessly behind on returning e-mails and calls; thanks for your understanding with that too, especially as the babies begin to get discharged.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Family & Friends,

Just wanted to give you a quick update on our status.  One hundred days have now passed since November 4, and here’s where things stand…

Casey is doing well, and has been off of feeding for seven days now.  Most likely he will go another week before feedings are slowly and carefully reintroduced to him, with the expectation of some stops and starts before he’s back up to where he was.  Thank you for praying for him—x-rays are good, and the plan is to just give his tummy a good rest and make sure that everything is all cleared up.  The ventricles in his head are still right at the threshold of where they would tap some brain fluid, but no action will be taken unless more growth, or problem symptoms, are seen.  Casey is 6 lb. 10 oz.

Danielle’s MRI results were about what we expected, and show that she has two areas on the left side of the brain in which some tissue has been lost.  We can expect potential motor skills/coordination issues, as well as some potential cognitive issues.  Our prayer is that her young brain can re-route some of these lost connections, so that her challenges will be fairly minimal, and that good therapy/intervention/love/prayer will compensate for other challenges.  Years will determine what those actual issues are.  A second attempt is being made to wean Danielle off of oxygen, so that she won’t have a tank with her when she goes home.  Today and tomorrow are the pass-or-fail days.  Regardless of whether she comes home with oxygen or not, Danielle is an amazing feeder who’s expected to be discharged this week!  She weighs 5 lb. 15.6 oz.

Benjamin is doing about the same—sometimes his feeding performances are overwhelmingly great, and other times underwhelmingly not-so-great.  He will get there, but we’ll see how fast—or slow—he does!  A Benjamin discharge this coming week is (hesitantly) being predicted (Wayne Gretzky’s wife hasn’t put any money on it though).  Benjamin weighs 7 lb. 8 oz.

We checked into the possibility of getting transported to Georgia early this next week.  Unfortunately, we found that hospital beds in the Savannah NICUs are full, meaning that we’ll check again on Monday or Tuesday, and see what things look like for coming back late next week.  Depending on how things look, and whether the window of opportunity in which Casey would be stable to fly should go shut, it may work and may not.  That possibility that I mentioned earlier, of some of us being medically transported, and others of us flying commercial, is looking like more and more of a possibility.  We will get home…someday…somehow!

Debbie Shadix’s second tour of duty with us ends today.  She has been wonderful, and has given Lisa and me a chance to get to the hospital together, rather than separately.  And Ashley is crazy about her.

Pray for Lisa.  She has that tickling in her throat that makes her think that she might be getting a sore throat or cold.  We hope that that will go away, but until then she is going to hold off on hospital visits, which is probably not a bad thing, since she could use a little break.

Thank you again for all of your prayers.  Good things are happening…some of them even on our schedule.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey, Danielle

(l-r:  Lisa holds Danielle; Danielle and Benjamin's new sleeping arrangements; a sick Casey who doesn't look all that bad)

Dear Friends & Family,

We just wanted to give you an update on the gang…

Casey is doing better—his physical outlook has remained good, and his x-rays show a much better picture.  While we don’t know if we should say that he has completely turned the corner yet, it seems clear that he is not heading toward surgeryl.  We are extremely grateful for that.  We have not heard any word about the brain fluid outlook from his head ultrasound this morning, but tomorrow we should know something about that.

Danielle’s MRI results have not been officially reviewed with us, but the initial word is that they don’t show anything surprisingly different from her previous head ultrasounds.  Danielle is doing an incredible job of feeding, and over the next week they will give her another chance to come off of oxygen support—if that doesn’t work, she will likely be discharged with an oxygen tank or the first month or two that she’s home.

Benjamin is…well…still Benjamin.  He does not seem in a hurry to learn to eat, or to want to eat his entire feedings with any consistency.  A few weeks ago, he was lollygagging, and now the non-official non-medical term would be lollygulping.  He is gaining weight just fine, but is plenty content to eat through a straw down his nose rather than through a bottle in his mouth.

If you are looking for something new to pray for, pray for a potential return to Savannah this coming Monday or Tuesday.  Casey is on day 5 out of either 10 or 14 days of antibiotics, with no feedings (other than nutrition from IV fluids).  Once that course is complete, and once his intestines look all cleared up, he will be gradually reintroduced to milk, which could take anywhere from a week to 6 weeks, depending on how his intestines do.  We are investigating the possibility of flying him, and the others, via air ambulances, on this Monday or Tuesday, while Casey is finishing his antibiotic/no-feeding regimen, but before he starts that delicate reintroduction to real food.  This would also be just before Danielle gets discharged, and while Benjamin is still hospitalized too, so that we would be heading back on three separate air ambulances (over 2 days).  What you can pray for, in regards to this, are:  no more setbacks for anyone during the next week; open bedspace and available doctors in Savannah; available air ambulances and good flying weather on those days; and logistical genius to kick in concerning how to get everything in order on this end and that end.

I will cite an oft-skipped-over verse of Amazing Grace, and take it out of its original context, that might sum up our next month or so:  “Through many dangers, toils, and snares we have already come.
It’s Grace that’s brought us safe thus far, and Grace will lead us home.”

Thank you for asking God to shower even more grace on us in order to get us safely home one of these days!

I neglected to mention in our last update that a few new camcorder moments with Ashley are on the website, which is www.expandingrobertses.com  .  You can go directly to a couple of the better ones by clicking here:  http://www.expandingrobertses.com/blinking%20superstar.wmv or here:  http://www.expandingrobertses.com/faith,%20fashion,%20ashley%20and%20shapes.wmv .

Thank you again for all of your prayers and encouragement.  It is extremely evident that we will never be able to send a reply to many, if any, of the e-mails from the last four days.  Please know, however, that we have read each one, and that they have meant the world to us in terms of helping us to feel that all was not lost when Casey’s prognosis looked so bad.  We are forever indebted to you…

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Family & Friends,

Casey’s last two x-rays—from last night and this morning—showed some improvement and that some of the gas in his intestines is starting to resolve and that things are starting to move through there again.  He is by no means out of the woods, and the x-rays still show a concerning picture, but this would be an indication that he will hopefully not be heading toward surgery.  We hope to report in the next day or two that things are looking even better, and that we can then wait with him through a slow two- to three-week full recovery before looking homeward again.

We thank you for your continued prayers for him, and for your bold encouragement to us.  It means the world to us, and when things seem particularly crazy, your presence reminds us that we are never alone and that God is good.

Thank you, and we’ll try to keep you updated in the next few days about Casey’s progress, Casey’s brain fluid, and Danielle’s MRI results, as well as who knows what else.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Family & Friends,

Thank you, thank you, thank you for your prayers for us and expressions of concern.  Please keep praying for Casey.

His condition is about the same as it was.  For whatever reason, his x-rays do not look good at all, and do not seem to be getting considerably better or worse with each passing x-ray.  At the same time, everything else seems to be functioning surprisingly well.  His tummy is still nice and soft, which is great; his breathing is still wonderful, which is great; all of his vitals and various levels seem to be excellent.  So we are unsure what to think.  It seems very clear from talking to the surgeon that if the rest of his body began to act sick, they would schedule surgery to at least find out the true extent of the problem, and possibly at the same time to fix it.  He was encouraged today by how well Casey is doing clinically (breathing, color, vitals, etc.) and said that he is confident that we would not have to do “urgent surgery.”  Of course, we are praying for no surgery at all, and for rest and antibiotics to resolve the air in his intestines and calm the inflamed area of the intestinal wall.  We are relieved that he doesn’t seem to know that he’s sick, but are still hoping for that first x-ray that looks considerably better than the previous ones, and which would let us breathe just a little again.

A previously scheduled head ultrasound was done on Casey today to see how the fluid in his brain was doing, and they found that the size of his ventricles is right at the border of needing to do a temporary tap into his brain fluid to relieve some of the pressure that that extra fluid causes.  They will do another head ultrasound on Wednesday to see if the increased size might be just a side effect of him being sick.  If it hasn’t gone down, however, they would probably need to do the tap, and would probably need to do it every few days after that for awhile, and would possibly then need to look into a more permanent shunt for the long-term.  We will see about that; right now, getting through the NEC issue is a much bigger concern.

Danielle had an MRI today, which has been scheduled for quite a while.  The results of this MRI will give the truest picture yet of the state of her brain, and give a clue as to the kind of damage that was done from the brain bleeds that she suffered early on.  Ultimately, only time will tell what challenges she may have, and what delays she may have in some of her motor skills or learning.  Please pray for a better-than-expected picture, and for Danielle’s long-term development to be a testimony of God’s mercy.  She did really well with the MRI itself, and took her whole feeding from a bottle right after it was over.  She may come home on a small amount of oxygen, and it’s possible that she could be discharged fairly soon.

For quite some time now, Benjamin has tested positive for the safe, tamed, skin-only version of MRSA, and so he has been in a separate bed than Danielle and Casey.  Yesterday, Danielle tested positive for this same safe, tamed, skin-only version of MRSA, which means that she and Benjamin now share a bed, which is very convenient since Casey just left her all alone on Saturday morning.

Benjamin is still doing well, but still struggling with his eating coordination.  Right now, that will keep him from getting discharged, and we are so focused on getting Casey well right now that the urgency of getting the other two discharged is much less than what it was a couple of days ago.

The doctor talked frankly with us yesterday about Casey’s plan, and about normal protocol for treating NEC, which is to administer antibiotics for 10-14 days, without normal feedings (he gets nutritional fluid through his IVs until then).  After that point, there would be a week or two of slowly and carefully working him back up to a normal eating plan.  In terms of when we can return to Savannah, we are now looking at at least three more weeks.  This was certainly not our plan, and we wish that all of this hadn’t happened right before we thought we were headed back, but we are willing to stay the course for the kids as long as it takes, and are grateful that Casey’s issues didn’t suddenly manifest themselves while we were in the air over Oklahoma or something. 

Ashley is doing well, and seems oblivious to the fact that Mommy and Daddy are a little tense.  She is enjoying her time with our friend Debbie Shadix (from Snellville, Georgia, a friend of Lisa’s mom and now of ours who came and hung out with us here in September).  Debbie is wonderful with Ashley, and landed in Phoenix just hours after Casey’s sickness started, which means that she got here for “such a time as this” so that we would have no worries about Ashley and can focus on getting back and forth to the hospital for the kids.  Last night, I got to give Ashley a bath, and—even while worried about the little ones—realized how blessed we are, and how badly we want Benjamin and Casey and Danielle at home with us and enjoying “real life” like this.

Of course you can pray for Lisa and me too.  We are very emotional, but holding up fairly well, and we have a very clear conviction that we want to be here for our little boy for as long as it takes and in whatever way it takes while he is very sick.  There are certainly and undeniably some very hard emotions from mid-November that are very close to the surface, and we just have to face those and deal with those and keep being where we need to be.  Thank you for your encouragement and for your empathy—we know that many of you have shared our journey with us as if it were your own, and that this has hit you like a load of bricks too.  When all of this is over, that level of kinship will not just go away, and we will be eternally grateful for you, our friends and family.  Thank you for being there for us.  We will keep you posted as we are able.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Friends & Family,

First of all, thank you for your prayers for Casey, and for the encouragement many of you have already passed along to us.

Casey had a fairly good night.  His x-rays (every six hours) have not changed a lot since his first one.  He will have another one at 8 a.m. our time (an hour from now as I write this), and we are praying that it will show some improvement.

Other than that, everything looks exceptionally good.  He has not had any problem breathing (this is a boy who just came off of oxygen a few days ago), his vitals and blood tests look good, his stomach is soft and the right size (not hard and distended), and he has not passed any blood since yesterday evening.  He acts like a little boy who is hungry and has an uncomfortable tummy (i.e. screaming his head off at times), and some morphine was brought in to calm him down and help him sleep last night.

Overall, we are encouraged, but really, really, really want to see some good x-rays today.

We will try to keep you updated, as we are able, but plan on being at the hospital most of the day today.  Thank you again for your prayers—they mean the world to us and to Casey.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Friends & Family,

Thank you for your prayers and notes of encouragement on Casey’s behalf.  Here is the deal…

Casey is fighting NEC, which stands for Necrotizing Enterocolitis (here’s a link:  http://www.pedisurg.com/PtEduc/NEC.htm).  It is a very, very serious issue, and takes the lives of 25+% of those who get it.  A pediatric surgeon called us tonight to say that Casey’s x-rays are very concerning—the wall of his intestine is not yet perforated, but is “pretty funky-looking”.  He also said, however, that he is very encouraged by the fact that Casey’s vitals all look very good, that he is still breathing very well on his own, that he doesn’t appear to be sick or lethargic, and that the x-rays haven’t as of yet shown a worsening progression.  Casey acts as if his tummy is irritated, and sucks on his pacifier very vigorously (partly because he’s craving real food), and is getting some medicine to help him feel a little bit better.

The first 48 hours after diagnosis are very critical, and every hour that things don’t get worse (or get better) is a good thing.  Triple antibiotics are being administered to him, and he will not receive regular feedings for at least a week (only fluids through his i.v.).  After those first 48 hours (10 a.m. on Monday), we should have a good idea of whether antibiotics alone will knock out the NEC, or whether he will require surgery that would entail removing the damaged areas of his colon.

We would like to ask that you pray specifically for…

            --the walls of Casey’s intestines to not perforate

            --Casey’s condition to improve over the next day and a half and then over the next week or two

            --surgery not to be needed

            --a full recovery for Casey

            --Mommy & Daddy to be present, courageous and expressive in the way that we deal with Casey

            --the Lord to give us a peace that passes understanding

All plans to return to Savannah are completely on hold and up in the air.  That is a very, very minor disappointment to us right now—we just want Casey to get well, and then we’ll go from there.  Benjamin and Danielle are doing fine; it doesn’t look like Benjamin will be discharged during the early part of this week, which is probably a good thing, since our focus will need to be mainly on Casey during the next few days.

We love you, and we thank you for praying for us and for encouraging us.  We understand that many of you—like us—are heartbroken, scared, and don’t know exactly what to say.  Please know that it still means a lot to us when you try to say the things that you don’t know exactly how to say.  We know that we are not alone, and that God loves Casey—and us—and you—very much.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

February 4, 2006 (1 of 2)

Dear Friends & Family,

Casey just in the last day has not been feeling good, had a little bit of blood in his diaper yesterday, and a lot of blood in his diaper this morning.  They have moved him to a different part of the NICU for tests, and will stop his feedings until they figure out what the problem is.  Please pray that he is having some kind of allergy to something, and that it is not the sign of any kind of intestinal infection, which could be very serious.  We don’t know how this will or won’t affect plans to fly back to Georgia, which were looking possible for this Wednesday, and that right now is a very very secondary concern.  Please just pray that he will be all right.

I didn’t mention in the other day’s e-mail that his head seems not to be swelling any more, which means that hydrocephalus is probably not an issue, and that he received a steroid shot into his lip for the hemangioma there, which he received very well.

We appreciate so much your prayers and concern.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

Dear Family & Friends,

We have laughed recently that our lives are like the movie Groundhog Day, in which the main character keeps on reliving the same day over and over, with some variations here and there.  Ironically, we woke up today, on the actual Groundhog Day, thinking that we knew what the plan was, and found out that that was not the case at all.  If you are half-confused by what I’ve just written, keep reading, and we’ll get you the rest of the way there.  (If at any point in the following nine paragraphs your head begins to hurt, skip them and scroll down to the last four, and the throbbing should stop.)

When we found that we did not have the capability to click our heels and magically find ourselves back in Georgia, we decided that we needed to have a plan…

Plan A, from the beginning, was to bring out a few extra grown-ups who would help us play man-to-man defense with each of our children on a commercial airline flight back to Georgia.  Because of RSV infections that are quite common out in public these days, which could literally very easily kill any of the three babies, this quickly became Plan Z.

Plan B came into view when a couple of friends worked very hard to get a private jet to get us back to Savannah.  Plan B faded out of view when we began to figure that each of the babies might need a large oxygen tank for the high-altitude plane ride, which a private jet is not equipped to secure (for some reason, most pilots and plane owners don’t seem to like the idea of a large tank rolling around the plane and then exploding and/or shooting out the side of the aircraft).

Plan C was to check into whether our insurance would cover the babies being medically transported back to Savannah in an “AIR AMBULANCE”, so that they could then be checked into the hospitals there in Savannah.  There are some big disadvantages to this plan, including that our whole family could not all fly back on the same plane, that we would have to leave Arizona fairly abruptly, and that instead of landing in Georgia and taking everyone home (i.e. our real home), we would have to immediately start our daily routine of multiple trips back and forth to a third NICU—and waiting for everyone’s discharge—rather than focusing on re-integrating into “normal” life and figuring out “the system.”

Plan C-1 looked like a strong possibility yesterday, and it looked like this:  Lisa would fly as a passenger on the Air Ambulance plane with the three babies, while Ashley and I hitched a ride with Delta and met up with everyone back in Savannah.  Plan C-1 was derailed when we found that only one patient was allowed per Air Ambulance, but that each Air Ambulance could hold up to two non-patient passengers.

Plan C-2 was to have three separate Air Ambulances taking each baby back to Savannah, with Lisa as a passenger on the first one, a friend/relative as the passenger on the middle one, and myself and Ashley as a passenger on the third one.  Plan C-2 came into question when our doctor informed us today that Benjamin could get discharged as early as this weekend and before the Air Ambulances could get us back, giving him non-patient status.  This plan is still a reality, but would—unfortunately—require three separate flights over the span of two days.

Plan C-3 started when Lisa called and asked if Benjamin would qualify as one of the two non-patient passengers on either Casey’s or Danielle’s Air Ambulance.  If Benjamin is able to pass an “altitude challenge” test that would simulate a 4-hour flight at the altitude in which we’d be flying, then he wouldn’t need an oxygen tank and could ride with me on Casey’s flight (the boy plane), while Lisa and Ashley joined Danielle on the girl plane.  However, if he does get discharged, but doesn’t pass his altitude test, then there is no way that he would be able to fly on an Air Ambulance as a non-patient requiring oxygen support (refer to the reason that Plan B failed).

Which brings us to Plan C-4, in which Lisa and Ashley accompanies Danielle on her Air Ambulance, a friend/relative accompanies Casey on his Air Ambulance, and myself and Benjamin and probably one other friend/relative would fly with an airline (who could provide supplementary oxygen to Benjamin without him having to bring a tank on board).

And if none of these pan out, then we’re back to Plan A—I mean, Z—never mind.  So how’s that for confusing?  (Some of you may be asking, “How safe could three ‘Air Ambulances’ provided by an insurance company in Georgia be?”  The high-tech picture included at the bottom of this e-mail should put your fears to rest.)

At any rate, we wanted to ask you to pray for us over the next few days, and that it will all work out (not like we think “it’s supposed to,” but in the way that would best serve the babies and the overall sanity of our family).

Also, we wanted to officially declare ourselves to be in the total-focus zone, in which we will probably not be able to take any phone calls, respond to any e-mails, etc., unless we absolutely have to get to them.  That does not mean that you can’t send us any e-mails; on the contrary, it has been a wonderful encouragement even in our craziest times to “get mail” and hear from you.  We just probably can’t/won’t reply.

I will try to send out a couple more updates as we have a little better idea as to what’s going on, but I can’t even promise that.  In one of those updates, I hope to explain some of the super-super-strict guidelines for visitors and such that will rule our lives for the next several months, and will try to explain why we have to (as much as we hate to) keep these babies way more hidden away than we would ever think of under normal circumstances.

We love you, thank you for your prayers, and appreciate so much the outpouring of support, love and kindness that we have experienced from our wonderful Georgia family (whom we’ve missed so much), our incredible new Arizona family (whom we already miss before we’ve even left), and our friends and family from all over.  Thanks, and we’ll try to be at least generically in touch.

In Christ,

Phil, Lisa, Ashley, Benjamin, Casey & Danielle

(Ashley ponders and laughs about bathtime)

(Benjamin poses, shows off his Arizona heritage, and does the robot)

(Casey; Danielle & Casey with halos)

(Danielle yawns and imitates Frankenstein)

Dear Friends & Family,

Another week, another update.  Thanks so much for reading about us, praying for us, rejoicing with us, and—mostly these days—waiting with us!

The babies are really doing well, and are in a holding pattern of slowly learning to consistently take their feeds orally, and of breathing on their own.  Benjamin is not requiring any oxygen, but is right now having the most trouble feeding.  Some of the nurses are now thinking Casey may get expelled from the NICU first, because he is doing so well with his feedings and isn’t requiring too much oxygen.  Danielle is doing particularly well with bottle feedings, but—like the others—would sometimes rather sleep than do the hard work of eating.  Danielle broke 5 pounds today, and is now weighing in at 5 lb. 1 oz., whereas her humongous brothers are 6 lb. 4 oz. (Casey) and 6 lb. 8 oz. (Benjamin).  Were they still in the womb, the babies would be 38 weeks along—since a 40-week pregnancy is an ideal full-term deal, we hope in the next couple of weeks to see some of their “normal-baby skills” start to kick in a little bit.  We of course would like to have them home and be heading home to Georgia, but are doing our best to just enjoy our time with them without pushing them too hard (we’ll wait till Little League to start that stuff).  Once we do get back to Georgia, I imagine that we will feel lost if we have to go a day without driving through a parking garage several times.

Ashley is having a good time with our friend Linda Doyal, who was brave enough to return to help us after being here the entire second half of October (when Lisa was admitted to the hospital).  Ashley refers to her as “Amy” occasionally, but then remembers that Cousin Amy went back to Kentucky on an airplane.  The other day I got her in the car and told her that we were going to Wal-Mart, to which she replied, “Target.”  I was actually very caught off guard, and will soon seek counseling to help me cope with a 20-month-old little girl who already has an opinion about where to shop.

Lisa is doing a great job of providing milk for the little ones.  She has really had to be disciplined to do this, and it’s very clear that a mother’s breastmilk was designed to provide the best possible nutrition and antibodies to help the babies.  I’m very proud of her.  This is very demanding.

We appreciate so much what Miki Allgire has done in coordinating help and donations for our home.  We are so grateful that so many people have been so kind to us, and it’s a very humbling thing to know that people were in our house putting together cribs and sorting out clothes in anticipation of our return.  Thank you to all of you who have played any part in that.

Today marks two months since Emily passed away.  We still miss her greatly, but have worked hard on dealing with her loss, and are learning to strike that balance of remembering her as a special part of our family without constantly dwelling on her loss.  We have begun working on a memorial project for her that is designed to reach out to families of premature children, and are excited about the possibilities of how it may touch some families that will be traveling a path that is similar to ours.  We will have more on that later.

While our friend Sherri Broom from Savannah (and her friend Betty) were hanging out with us in the nicu the other day, the Harlem Globetrotters came to Phoenix Children’s Hospital, and ended up hanging out with the Roberts kids.  Definitely an amusing contrast between pro basketball players and preemies.  A video is on the website.

We’ve mentioned camcorder videos that are on our website.  Here are a few shortcuts to some of the extra-fun ones if you’d like to click on them (they still may take a few minutes to load up on your computer:  Ashley juggles--http://www.expandingrobertses.com/ashley%20the%20juggler.wmv; Hanging out with the Globetrotters--http://www.expandingrobertses.com/roberts%20babies%20meet%20globetrotters.wmv; Ashley endorses Dr. Keith Seibert--http://www.expandingrobertses.com/ashley's%20pediatrician%20endorsement.wmv; Ashley on animals--http://www.expandingrobertses.com/ashley's%20animal%20interview.wmv;