In Memory of My Mother

I know many of you are already aware of this, but I am heartbroken to share with you all that my beloved Mother passed away yesterday.  As a testimony to the often unfair world we live in, she was hit with her fourth recurrence of oral cancer.  Almost everyone who gets this brutal disease has a history of heavy tobacco use, and those of you who knew my Mom will remember her as a skinny little thing who never smoked a day in her life, went to Curves faithfully three times a week (how cute is that?!), and ate a healthy diet.  She also had malignant hypertension and a brain aneurysm, but she laughed in the face of those (literally sometimes!), and kept right on going.  However, this time the cancer was just too much.  As a testimony to her tremendous inner strength and will to live, she completely mystified the hospice community of Atlanta and held on for almost 2 weeks longer than anyone expected.  She slipped into a coma and my dear sister Beth, who cradled Mom in her hands and in her heart for the last month of her life, was told on a daily basis by the nurses who would visit my Mother at Beth's home: "Honey, it won't be much longer... tomorrow noon at the latest," or "It'll be in the next few hours."  Well, as her girls know, NO ONE tells my Mom when or how to do something!    It was one of the most brutal things I've ever had to endure, waiting for my Mother to die, wondering if she was in pain, wondering why she was hanging on so long.  Was there something she wanted to tell us???  Something she wanted to hear???  In the end, I can take some small comfort in knowing that my sisters and I all had the chance to tell her how much we loved her, how precious she was to us, and how much she mattered.  We shared our hearts with her before she lapsed into her coma, and continued to do so up until the day she passed away.  Beth created an environment of peace and love for my Mother, surrounding her with photographs and pumpkin scented candles (one of my Mom's favorite scents), continuing to play her favorite television shows and keeping her aware of what was happening as she administered her pain meds or arranged bed clothes, and marveling as her own animals, 2 cats (Friendly and Un-Friendly) and a big loveable dog (Bodi), took turns holding vigil at my Mom's bedside (often IN said bed).  We all think that, maybe, she was just enjoying having some time to, as she would say, "just BE."   Several weeks ago Beth touched my heart in a way I'll always be grateful for, when she shared with me that she thinks my daughter Regan is/was the great love of my Mom's life.  My Mom reveled in Regan's big brown eyes (a gift from HER side of the family) and adored those huge dimples... She closed many of our phone conversations over the years with: "Be sure to give Miss Dimples 57,000 kisses."  She got a kick out of the fact that Regan could identify Audrey Hepburn on sight (my Mom's absolute favorite) and loved ballet and old Hollywood musicals as much as my Mom did.  Not many kids these days have seen Singing in the Rain, On the Town, Royal Wedding, and The Sound of Music all before their 4th birthday!  And can sing and re-enact them with accuracy and aplomb!  I know one of my Mom's favorite things to do was sit on the couch and watch Regan perform.  It never failed: I would be running around the house, trying to accomplish some apparently important task ("gotta wash those clothes, gotta send that email") and my Mom would try and get my attention as Regan flitted around with her pink guitar slung around her neck, singing to her dolls/stand-ins for the von Trapp kids.  I was usually too busy to join her, and I will always regret not taking the time to sit next to my Mom, put my arms around her, and revel in the moment.  Let that be a lesson to all of us.    Unfortunately my Mom had very little time with Griffin, or "Biff," as she liked to call him.  Apparently in her day, good-looking football playing guys who wore letterman jackets and got all the girls had names like "Biff," and my Mom thought that personified her grandson.  She loved seeing Regan and Griffin together, and couldn't get over how much they look alike.  How sad that she will not get to see them grow up.   One of the reasons for sending this out to all of you is to ask those of you who knew my Mom, either directly or indirectly, to share with me a remembrance of her.  It can be a favorite memory of yours (thanks Kris... I had actually forgotten about her adorable and comic avoidance of left-hand turns!), a poem that reminds you of her, a story you remember her telling that made an impact on you, a favorite saying you remember of hers, anything at all.  My hope is to put together a book in tribute of her for her grandchildren to have for always.  Because their memories of her will be weak or non-existent, I want to make sure they know who their Grandma was, and how many lives she touched.  I promised her this.  There is no rush, but when inspiration strikes, please send me your tribute.   I know those of you who knew my Mom heard it yourself, or can easily imagine her saying: "I don't want a funeral, an obituary, nothing!  When it's over it's over, and move on!"  Well, my sisters and I are taking one last opportunity to defy -- in a purely loving way-- our beloved Mommy.  Beth's husband will be writing a tribute to her which will be published in the Ventura Star Free Press, and I will send a link once I have it.  I think she would actually love this -- a tribute from a hunky Jewish guy, oy vey!  In addition to helping spread the word about her death to the literally hundreds of lives she touched as an elementary school teacher, it will also help to raise awareness and money for a cause my Mom was passionate about.  Chris Chergoski was the closest thing to a son my Mother had, and his brave battle with ALS/Lou Gehrig's disease inspired her to no end.  Like my Regan, Chris has a set of dimples that won't quit and is truly the definition of "just a great GOOD guy."  This will be printed in the obituary, but to let you all know now, my sisters and I are requesting that in lieu of flowers, donations be make In Honor of Chris Chergoski (who continues to fight the good fight), in Memory of Francine Ford.  Here is the proper way to do it:   Please make your donations:   In Memory of Fran Ford, For the Ventura "Ski" Team   Checks payable to the ALSA LA Chapter, please put Ventura "Ski" Team in 'memo' section.     ALSA LA Chapter  P.O. Box 565 Agoura Hills, CA 91376-0565    My sisters and I feel that our Mom would forgive us this tribute, especially knowing that it helps out her BFF's (Karen, I LOVE that you refer to her that way) beloved son.   I want to close with one more thing.  Those of you who have daughters are likely familiar with the movie "Barbie and the Diamond Castle."  Well, there is a song in the movie called "Connected," that Regan would sing to my Mom all the time.  Now Regan has done what we all do when singing a song who's lyrics we cannot completely make out.  She improvises.  It has to be seen and heard to be believed, and it is truly probably one of the things my Mom, who traveled all over the word, loved more than anything.  In fact, Beth has told me on more than one occasion that when my Mom would be having a particularly difficult time during her last few weeks, she would start to sing the song to her -- the Regan version -- and through the pain, through the disorientation, it would always bring a smile to her face.  I have included the lyrics below, because they are truly poignant and fitting.    What started out as a brief notification has, characteristically, turned into something much longer.  What can I say?  I am my Mother's daughter.  She was a truly remarkable woman who dedicated her life to the service of others.  She touched so many people, she made such a difference, she mattered.  I will remember her always with love.   ~Sheila     "Connected"   I'm blind-folded on this carriage ride that they call life.  Keep trying to make it through the next turn, knuckles white and holdin' tight.  So here I go, takin' the curve,  but I know that I'm never alone.  I think of you, and how you never let me go.  I feel connected (connected), protected (protected), it's like you're standing right with me all the time.  You hear me (you hear me), you're near me (you're near me),  and everything else is gonna be alright.  'Cause nothing can break this, nothing can break this, nothing can break this tie.  Connected... oooooh connected inside.  It's not an accident, the time we spent apart.  But now we're so close, I can always find you right here in my heart.  You've given me somethin' I need, and I don't ever want it to end.  Because of you, I know I've found my strength again.  I feel connected (connected), protected (protected), it's like you're standing right with me all the time.  You hear me (you hear me), you're near me (you're near me),  and everything else is gonna be alright.  'Cause nothing can break this, nothing can break this, nothing can break this tie.  Connected... ooooh connected inside.  Everytime that I breathe, I can feel the energy.  Reachin' out, flowin' through, you to me and me to you. wake or dream,  walk or stand, you are everywhere I am.  Seperate souls, unified, touching at the speed of light.  oh, yeaaaaaaaaah, oh whoa YEAH  I feel connected (connected), protected (protected), it's like you're standing right with me all the time.  You hear me, you're near me,  and everything else's gonna be alright.  connected (connected), protected (protected), it's like you're sitting right with me all the time.  You hear me, you're near me,  and everything else's gonna be alright.  'Cause nothing can break this, nothing can break this, nothing can break this tie.  connected, connected inside, connected, connected inside, connected.  oh Yeah!

Wanting Pictures??? - January 11, 2008

If you want to see Lam's pictures of Regan and Griffin CLICK HERE!!!

Long time no blog... - January 6, 2009

Do you know someone who is a gourmet cook, fantastic baker, gardener extraordinaire, amazing photographer, seamstress par excellence, devoted mother, AND has a PhD???  I do.  Her name is Lam and she has one of the two blogs I follow on a regular basis.  The other being, of course, my SFAM (sister from another mister) Amber.  A while back I asked Lam if she could make some sort of padding for the rocking chair which lives in the back of the house, and where Papa spends a good deal of time rocking Griffin.  It's where they watched his first football game together -- a momentous event in this house (please God, let this child be a sports aficionado.  It would just make life SO much easier for everyone ;)).  Papa has spent so much time rocking him that a blister developed on his right forearm where he props it against the arm rest.  Not having any sewing ability WHATSOEVER, I didn't realize the level of difficulty required of the task, and, truth be told, she could have sewn together two half-moons of fabric and I would have been impressed.  Well, she did much more than that.  I'd post a photo, but hers are so much better than any I would take.  In addition to that, she snapped some gorgeous photos of the kids while she was here.  She was scheduled to arrive around 10 a.m. but was early (which, as she reminded me, is an important trait in a therapist -- "I must not be that important if my doctor is always late...").  However this interfered with my carefully constructed plan to have the television off when she arrived.  You see, Lam also doesn't own a television, and that is something which, while I admire, just could NOT do.  I would not be a very happy person without my 30 Rock (if you haven't seen that show, it is something you MUST check out) and reality TV (The City, the Real Housewives -- and though I am betraying my OC brethren, the NYC and Atlanta casts are SO much more interesting, the Bachelor -- ummm, season premiere last night, that is some DAMN good tv right there.  I could go on but I've embarrassed myself enough.  And yes, I do have an M.D. from a reputable American medical school.).  Furthermore, Regan's hair was still in a bedraggled braid (our new way to wear our hair which makes the morning comb out so much less dramatic since it gets less tangled during her nightly gymnastics) and Griff was sleeping in a spit-up stained onesie.  Not what I was planning on having him wear for the photos I knew she was going to take.  Well, if I didn't know better, I'd say Lam knew ME better and arrived early specifically so that she could capture the kids in all their naturalness.  Although I do have to admit I undid the braid ;).  She snapped away and got some of the best photos of the kids I've seen.  So, please, check out her blog and read the lovely words which accompany her lovely photos.  I hope to start blogging more  -- if for no other reason than to get the "blog pushers" (you know who you are!) off my back.  They are almost as bad as Kathleen, who has thus far successfully addicted me to everything she's suggested I try (facebook -- a truly awesome way to reconnect with people. I'm back in touch with high school friends, med school friends, residency friends.  People I've wondered about, and care about, but would otherwise never keep in contact.  More of her "crack": on-line scrabble, pathwords, twilight).  I've thus far resisted the Pilates suggestion, but if it'll give me a tummy like hers, I might have to take her up on it.  Oh, and she's reaquainted me with Santa Margherita Pinot Grigio.  A wine first introduced to me by my dear friend Jameila, lost along the way, and now re-discovered.  Again, if you like your whites: check it out!  Okay, enough rambling for now...  I'm not sure if anyone still checks in here, especially since it's been almost 3 months since my last update, but I would really like to be a little more timely in my entries.  Having no technical skills at all, I am still emailing my entries to Amber, but I promise to learn how to post to my own blog so she will have one less thing to do everyday.  Hopefully I'll be back before another 3 months passes :).

-Sheila

Update - October 13, 2008

It has been so long since I've updated the blog (via my personal tech support known as Amber) and I have heard through the grapevine that people actually go on and check to see if there are any updates on Baby G and family.  That truly warms my heart and I still so appreciate that people want to see what he (and big sister Regan) are up to.  Although not surprising, it is nevertheless humbling that he made such an impact on everyone.  He sure continues to do that for our family.  With that said, I will try and briefly (never my strong suit) summarize what's been going on.  The past few weeks have been a whirlwind for sure.  It seems that the winter viruses have decided to get a jump on our family this year, and it feels like Regan has been coughing for over a month.  She had her first course of antibiotics just a few weeks ago (pretty remarkable since she's 3 1/2, and quite a change from her brother who has already sampled ampicillin, gentamycin, vancomycin, ancef, keflex, and vigamox in his first 2 months!).  It has been a struggle to try and keep Griffin from picking up whatever she's brewing, and, as I'm sure anyone who has had a new baby in the house with an older sibling can attest, it's a balancing act between trying to keep him well, and not cause resentment on her part by trying to make sure she doesn't cough all over him ("Regan, PLEASE be careful around baby brother")!  Even so, she is as much in love with him as the rest of us, although the other day when G was screaming and Papa said, "what should we do with him Regan?" her answer was a sigh and a resolved "I guess we're stuck with him." 

To date Griffin's forays out of the house have been pretty limited to doctor's appointments, although we did take him to a party at Amber's Mom's Susan's house on Labor Day.  She had a small gathering at her house, and I decided to bite the bullet and attend.  For anyone who DIDN'T know me when Regan was a newborn, this might seem like no biggie, but let me just say, if I could have encased Regan in a bubble I would have, and the fact that I took my ex-NICU preemie, ex-septic kiddo to a party is a HUGE accomplishment, if you will.  It means I am so much more relaxed with this little guy than I ever was with Regan -- contrary to popular opinion ;). 

Susan went above and beyond to make me feel as comfortable as I could, and this included keeping the guest list limited to just Amber's family, and Aunt Cathy's family, and anyone who knows Susan knows what restraint this took because this woman likes to throw a mean party and entertaining on a grand scale is her forte!  We had a wonderful time, enjoyed some delicious food, Griff acted like a perfect angel and Regan and her BFF Maddy got to act crazy with each other, leaving Amber and I to shudder at what they will be like in a few years.  Jack definitely took advantage of the opportunity to try and put the moves on Regan, leaving us to shudder at what HE will be like in a few years!  Here's some photos to commemorate the event, and I have to steal Amber's quotes for a lot of them b/c they are just too perfect!

 "These girls know how to party!"

 "One juice box too many!"

"G just chillin' at his first party."

Aside from getting to go to his first party, Griffin has been growing and developing right on target.  He is so much a part of our lives that I truly have trouble remember what it was like before he became such a huge part of it.  He is smiling now and I defy anyone to keep a straight face when he is grinning at you -- it is just too adorable!  He is not a fan of 'tummy time', but guts his way through it as long as someone hums the "Rocky" theme song or 'Eye of the Tiger' for him.  Regan spends a lot of her play time these days being a mini-Mommy and we often here things like "Oh, I've got to change my baby's diaper; he made a big poo poo AGAIN," complete with an exasperated sigh, and if Griffin is crying, there is always a cute little voice piping in with "It's okay, big sister's here, big sister's here."  If I am wearing Griff in a baby carrier, she will rig up whatever she can to imitate me, and one of our friends who makes them created an adorable one that is perfect "Regan-size" for her to carry her babies.  

Here are some more photos of the Mading kids over the past two months:

Update - September 5, 2008

I have a few moments, so I thought I'd do a quick update...  At the moment we are on "Griffin Sick Watch."  Two days ago Regan spent the day hugging, kissing, and breathing all over her baby brother, as she usually does.  That evening she started coughing and was then up all night coughing, crying, and saying "I need to swallow, but it hurts to swallow, but I need to swallow..."  Her temperature was up to 103 and she felt miserable.  I never realized until I was a mother how it is really true that you can look at your child's face and know instantly if something is not right.  Regan just LOOKED sick.  It was also a  definite introduction to the 'now I have 2 kids' mentality.  Normally, I would be hugging her, babying her, and worrying myself sick over her with worst case scenarios (call it the curse of the pediatrician mommy), but, in addition to doing all those things, I found myself panic-striken over my OTHER little one.  Griffin is barely 5 weeks old, and only 3 weeks out of the NICU, so obviously another illness would be very bad.  We are keeping them separated (which makes Regan FURIOUS) but, as my friend Marnie who's youngest son is a heart transplant recipient, says (she is also a pediatrician, and someone who lives with the fear of one child infecting the other but on a much greater scale) "if she was going to pass it on to him, she probably already did."  So we are just watching and waiting.  I have so many other happy things to blog about, and I'm hoping I will have some time later to write about them because in the grand scheme, things are going really well.  I also want to post pictures so everyone can see how big Griffin is getting.  He is absolutely adorable!   

-Sheila

Pictures - August 25, 2008

 Thank you Mama Amber for the Wonderful Welcome Home!!!

 Regan and Griff (being held by Oma)

Sunday Update - August 23, 2008

It has been so long since I've blogged (I feel so computer savvy saying that, even though my blogging consists of emailing everything to Amber and letting her do all the work.  I know, I know, I should learn how to do it myself, but she makes it so dang easy for me ;)).  I don't even know where to start.  First of all, thank you to everyone for checking in with us via phone, email, letters, Facebook (yes, I said Facebook) -- I feel terrible about not responding to people in a timely (or really ANY kind of fashion), but please know how wonderful it is for us to know how many people are still thinking of our family.  

Things have been a little stressful around the Mading household lately.  In an unfortunate turn of events, Fred's job has been thrown into jeopardy.  Medicine is a fairly stable profession (people will always get sick and will always need medical care), but there is that pesky little component known as hospital contracts, etc.  Since a new group is taking over the lease of his hospital, it looks like they will be clearing the decks so to speak, and everyone in the ER department will need to look for new employment.  In addition to having the normal financial worries, I feel so badly about this because Fred has worked so hard for so long and finally felt somewhat settled.  He is Chairman of his Department in a hospital where he is extremely well-liked and well-respected, and now he will have to essentially start over somewhere else.  I know in the end we will be fine and I have complete faith in Fred.  Everything he has ever achieved has been completely on his own through hard work and determination:  he's been working steadily since he was 15 to help pay for household expenses, he worked 3 jobs while in college, joined the Navy to pay for medical school, and has never had a thing handed to him.  But I hate seeing him so stressed trying to ensure he has a place to go to work in the next few months.  One thing we are continually doing, is reminding ourselves how lucky we are to have work issues be our big problem.  It brought tears to my eyes (for a number of reasons) when Fred told me that whenever he starts to panic too much (and this is a guy who, as a little kid, was twice evicted from his home, which makes his anxiety all the more understandable) he remembers a night not that long ago when Griffin was still in the NICU.  I was still at St. Jo's and Fred had wheeled me over through the infamous tunnel to go see our boy.  We were waiting for the elevator in the basement, and as the doors opened, we saw a couple standing there with their arms around each other.  The man's eyes were red and watery, and his wife had tears streaming down her face.  The man looked at us with the saddest, most heartbreaking smile, and I remember thinking, "what an incredible person to be able to smile when you are clearly going through something horribly traumatic."  When the elevator doors closed and we pushed the button for the second floor, it became clear that these poor people weren't riding the elevator anywhere.  They were just standing there, holding each other, too incapacitated by grief, or pain, or both, to do much of anything other than just hang on as the elevator went up and down in the middle of the night.  Shortly after we encountered them, Fred and I would talk about that couple all the time, but neither of us have mentioned them since we got home.  So when, the other day, he said "whenever I get too stressed about this whole work thing, I remember that couple and think how lucky we are," it was a good reminder for me as well.  If my children are healthy, I truly have what is most important in this world.

Speaking of CHOC, I went back to the NICU today to see Pernilla and pick up some things from her.  I know I have used the word 'surreal' way too many times in this blog, but it is so accurately describes what it was like to head up to the NICU -- not as a hurried resident thinking of all the things I needed to do before I could run down and grab my chai tea latte with chocolate, or as a Mommy of a NICU baby with my little yellow and white wristband that granted me instant access, but as a "normal" person who had to sign in like everyone else.  It was wonderful to see Pernilla of course, and I also was able to visit with a friend I made while Griff was in the NICU.  Without giving away any personal information since I don't have her prior approval, I will just say she has an incredible little fighter of a son who was born at 25 weeks and is an absolute doll.  Griffin and her son were born a week apart, but he will be a resident of the NICU for quite a while longer due to his extreme prematurity.  However we are thinking positively and already planning for their future playdate.

And now, for what everyone really wants to hear about:  GRIFFIN.  (And please forgive me for spending so much time going on and on about "non-Griffin-related" things.  It is truly a form of catharsis to get everything "out" so to speak, and since I have a little time today, I guess I took advantage of it!)  He is doing wonderfully!  He is nursing great and often even takes more pumped milk from a bottle after nursing (and don't worry: Mary, the lactation consultant at CHOC and my personal Fairy Godmother -- only thin, blonde, and younger -- so named for how she was my lifeline after I had Regan, gave me the green light on that).  He is a very agreeable little guy and becoming more alert every day.  He makes the cutest faces: a smile (however involuntary it might be), a grimace, a kiss face, one after the other.  Our only real "issue" right now is his reflux.  He had it while in the NICU and was on Reglan (a medication I have never liked, and I have personal experience!) which didn't seem to help that much and made him quite jittery.  I never really wanted him on it and it basically took 2 Attendings and a Pharmacist to convince me to give it a try.  When my Pernilla came on service as his nurse, one the first things she asked me was "did you want him on the Reglan?"  Not sure where she was going with this I decided to be completely honest and said "you know what?  NO!  I would really prefer he not be on this.  Can't it cause permanent tardive dyskinesia (yes, yes, exceedingly rare, I know)???"  She agreed with me completely and it was so nice to have someone 'in my corner' so to speak.  The Reglan was d/c'd that day and I noticed no worsening of his reflux, and in fact a marked improvement in the jitteriness.  So even though it is a bit "exorcist" to see my baby turn his head to me and milk come pouring out his nose and mouth, I want to hold off on any intervention for a while at least.  We are doing the usual standard stuff (elevate the head of his co-sleeper, upright after feeds, yaddah yaddah), but the thing that seems to do the trick the most is the "Papa intervention."  Whenever my Dad gives him a bottle, or holds him after feeds, we are noticing a definite decrease in reflux symptoms.  I think it is b/c my Dad is one of the most calming people I know, and Griff just senses that and it helps things settle down.  Totally non-medical observation there, but it does seem to make a difference.  I do have to say the spit-up/emesis part out the nose, while disconcerting, isn't nearly as scary as the "I can't catch my breath and this kinda hurts" look Griff gets when he refluxes.  It leaves me thinking "can't this kid catch a break???"  We'll watch it closely and hope it resolves as he gets older and bigger.  Soon please would be nice :).

Regan is still madly in love with her baby brother, and says we are the "2 Mommy's" who take care of Griffin.  When she came home yesterday from Amber's son Jack's second birthday party (wherein Jack made several passes at her I might add), she asked how her baby brother did.  I told her he did great, just "threw up" a few times, and she shook her head and said "I should have been here"!  She has been loving going into the pool every evening with Papa and Daddy and is unbelievably more comfortable in the water than she was at the beginning of the summer.  She will hang on a pink noodle and float all over the pool, and do "push around" arms as she 'swims' from my Dad to Fred.  The only thing she REFUSES to do is wear a bathing suit!  When she swims in Grammie Susan's pool (Amber's Mom) she knows she has to wear a suit, but at home she is adamant about "skinny dipping" and will say point blank: "I only skinny dip in my pool!"  Needless to say it is the cutest sight ever.  She will never be the kid that throws herself into the deep end without a care in the world, but just seeing her enjoy the water and overcome her initial fear of it is wonderful.

Well, I think I've exceeded my "Mommy time alone at the computer" for today.  Off to feed a baby and do some laundry: how could I have forgotten how much laundry is generated by one tiny baby in a 24 hour period???

Pictures to follow!!!

Love to everyone, 

Sheila

Home Sweet Home - August 17, 2008

I still can't believe we are home!  It's been 4 days and in some ways it seems like we were never at CHOC -- it almost has become the distant memory I hoped it would be.  I don't think this will surprise anyone who has kept abreast (and that word is SUCH the word of the hour around our house right about now -- more later) that Griffin is the easiest baby one could ask for.  He cries only when he's hungry, and otherwise sleeps, or looks around the house like "hey, where's all my homies?  I've usually got about 6 buddies sharing the room with me!"  Regan has been wonderful with him.  She watches out for him, and is always telling me "my baby brother needs this or that" and "how can I be your helper, Mama?"  She is still unable to sleep without someone in the room with her, which will make things interesting when Papa goes home and Daddy goes back to work, and we're still "off schedule" from her normal routine.  When we got home I told her we were going to "get back on target" and she thought that was hysterical.  Her temper is still a lot, ummm, let's just say, "more incendiary" than it was before, but I think that's to be expected.  

 

Just so I don't forget some of the details, I want to write about Griff's last day in the NICU.  I got the call when I was driving in that we might be getting discharged that day, and as I said in an earlier post, I was SHOCKED.  I think when Dr. A kept saying "I don't know" when Pernilla and I were pressing him on "what will you do if the bone scan is negative?" he had the idea to d/c home on p.o. abx, but he didn't want to give me false hope if the bone scan was positive.  Come to find out after chatting with a friend of mine who is now a ward Attending (and was a year behind me in residency), he has had FOUR babies with Staph aureus osteo (bone) infections in the last few months, and I think that is another reason Dr. A was being so careful with Griffin.  For whatever reason, this 'strain' of MSSA has decided to terrorize babies bones, and he wanted to be sure Griff wasn't joining that poor group of newborns.  As he explained to me, the thing he (Dr. A) is most concerned about is that the infection has gone into Griffin's cartilage.  The bone scan was negative which is wonderful, but things could still happen in spite of that.  Sending him home with p.o. abx, while "more liberal" (his words, not mine) than other ID Attending's probable course of action, is still safe b/c, as he says, "I am backing myself up."  (And let me just say here I wish I could do Dr. A's accent, b/c everything he says sounds so much better when said in his distinctive Latin American Spanish accent.)  And IF (and let's not even go there), this evil MSSA does decide to attack Griff's bones, we will know MUCH earlier than if we gave him a longer course of IV abx which might mask something brewing.  Part of the 'backing himself up' is follow-up labs.  Griffin had a cbc with manual diff and crp on Friday and everything looks great!!!  His white count is normal, the bands are fine (an important marker of infection) and probably most important, his crp has dropped in half!  All wonderful signs that the p.o. abx are doing their job.  He is feeding well, and acting like a normal sweet baby.

 

Anyway, back to leaving the NICU: it was as tearful as I expected.  Pernilla was there (she was PICC line nurse that day, so running all over the hospital assessing kids for lines, but made sure to be at the bedside as we were leaving), as was Denise, who put in the magic IV that enabled Griff to go 5 straight days without being poked.  Some of the nurses who were such wonderful supports for me, even though they never actually took care of Griffin, were not there, but some were, so I got to say some of my thank you's, but others will have to wait.  There were lots of hugs and tears, and Pernilla and our nurse for that day (and the day before) Suzanne -- who was trained by Pernilla so you can imagine how awesome she is -- spent a lot of time with Regan, focusing on her and making sure she felt important and included.  It was only Regan's second trip to the NICU and my Dad and Fred told me she wanted to wear her "prettiest dress" and her "ballet barrettes" to go get her baby brother.  Pernilla gave her some preemie diapers (so small they have to be seen to be believed) and tiny bottles to use on her baby doll.  We had to put Griff in his car seat and keep him hooked up to the monitors for 30 minutes to make sure he didn't have any A-B spells (apnea or bradycardia) and except for some normal baby spit-up, he did fine :).  

 

It was so surreal to be driving home with my two little ones in the car.  Once we got home, we went into "OMG we're home and we have so much to do!" mode, which was mixed in with a feeling of pervasive joy about having everyone finally together under one roof.  We kept Griff in his carseat where he happily slept under the watchful eye of Papa, who sat about a foot in front of him and stared away at his grandson, while Freddie and I (with out little helper Regan) tore through the house.  We set up his diaper changing area, put the linens on his co-sleeper,  etc. etc.  All of this was helped immeasurably by Oma, who, while I was in the hospital, painstakingly washed every single article of clothing and baby blanket and burp cloth Griffin had.  If you were at my shower you know what that entailed, and if you weren't, let's just say it must have taken her hours.  And of course, being Oma, she then perfectly folded and/or hung everything so precisely that even an OCD perfectionist like me was satisfied!  After some more "house readying," bliss of all blisses, I got to give my baby his first ever bath.  His cord had come off while still in the NICU so we were able to give him a real bath in our kitchen sink.  Regan stood in her leprechaun chair (a stool-like contraption she got for St. Patrick's Day -- big around our house -- which she nicknamed herself in honor of the guys who brought it to her) and helped with the shampoo-ing, etc.  I'm very proud of myself in that I am not doing any of the "don't touch your baby brother!" stuff that I might have expected myself to do.  I think Fred and my Dad are pretty shocked as well b/c they get a very surprised look on their faces when Regan says "I want to do this or that with my baby brother" and I say "Okay!"  Of course, there have been some melt-downs when she doesn't get to do EXACTLY what she wants to do EXACTLY when she wants to do it, but in those cases I have Papa to save the situation.  He is so good at coming up with cute little games to distract her.  Apparently when I was away they devised a new thing whereby Papa can goof-up 5 times before Regan gets to put him in time-out.  It is a huge joke between them, and diffuses a lot of "I'm going to have a melt-down in T minus 5 seconds" situations that I might take a little too seriously in my sleep-deprived state, and that Papa just takes in stride in his usual easy-going calm manner.  

 

Speaking of sleep deprivation... well, let's not speak of it,  b/c anyone who has kids knows exactly what I'm talking about, and anyone who doesn't yet have kids can remain blissfully unaware for now.  Nursing is not going as well as it did in the hospital, but he still takes his bottle of pumped milk like a champ.  I've already started filling up the deep freeze Freddie bought with pumped milk, and my Medela Pump in Style is my right hand man these days.  I make a LOT of milk (I think I've even surprised Mary, the fabulous lactation consultant at CHOC and a dear friend who made an emergency return call to me while she was at Fashion Island!) with my supply.  I know that it is a GREAT problem to have, I just hope that Griff will actually get to USE all this pumped milk eventually, and we won't find out he is allergic to something I've been eating all this time and then can't use it, which is exactly what happened with Regan.  So far, I'm just eliminating peanuts and tree nuts from my diet, since that is what Regan is anaphylactic to, and I want to do whatever I can to make sure Griff doesn't follow in his sister's footsteps in that one regard.  She is also allergic to eggs, but I am eating them in baked things -- just not in their 'native state', like hard-boiled or scrambled, etc.  Otherwise, I am not really restricting my diet too much and so far he seems to being doing well with that.  Of course, as we have come to learn, the food allergy world is unpredictable and doesn't play by any rules so things could change at any minute, but for now I'm going to 'stay the course.'  I also have to say that since we have been home we have received calls from Pernilla, Dr. A, and the Director of the NICU to see how Griffin is doing -- he has an A-team keeping tabs on him, for sure!

 

 

Alright, I better get back to my babies -- Daddy is holding Griff and watching golf and the olympics.

 

At the risk of repeating myself, I just want to again express my heartfelt thanks for all the prayers and good wishes sent our way during this ordeal.  We are so grateful to so many of you and I have saved each and every note, card, email, etc. for Griff's baby book so he will know how loved he was right from the beginning.  And Mama Amber, what can I say???  I love you and will be FOREVER grateful to you for everything -- not the least of which is being our own personal webmaster.

I'll post pictures later -- hopefully tonight.  

Love, Sheila

MIRACLE DAY!!! - August 13, 2008

I know that what I am about to say will come as a shock.  It is to me and I've known for a few hours.  I am typing this on a snagged laptop in the NICU next to Griff's crib b/c I know I won't have time for lengthy blogs for a few days at least.  The reason???  WE ARE GOING HOME TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I know!  I am as shocked as you are!!!  When driving into the hospital today I got a call from Griffin's lovely nurse that Dr. A had come by.  The bone scan was completely "unremarkable" and he felt that it was appropriate to switch to p.o. abx (oral) and send our boy home with close follow-up (i.e. out-patient labs to follow the cbc and crp).  I know you will think I'm crazy, but after hoping and praying to go home, the first thing I thought was "I'm not ready!!!"  I joked that I will go home, but only if I can take Pernilla and all the monitors with me.  We had a detailed discussion during rounds and Dr. A came back to the NICU to talk to me (read: convince me) at length.  He made a very convincing argument, and I of course (even though I love and trust Dr. A) had to run it by the NICU Director who basically said "get outta here!  You don't want him to pick up something else."  I have never had so many conflicting emotions.  It was surreal to actually TAKE OUT his scalp IV after wanting nothing more than for it to STAY IN for the past 2 weeks.  Luckily most of my favorite nurses are here today (of course I had to get Pernilla's seal of approval) so it will be an emotional good-bye when we leave in an hour or so.  I had so many cute little things planned to express my thank you to the NICU in general, and the nurses in particular, and I feel bad that I haven't had a chance to put my plans into action.  But rest assured I will be back -- next time bearing gifts, and not a baby!!!  

I wish I could adequately express to everyone how much your emails, cards, good wishes, and prayers have meant to our family.  There is just no way big enough to say THANK YOU.  As much as I would love to have every single one of you over to meet our little hero in person, I have been cautioned by the NICU nurses that although I should try and treat Griff as a "normal baby" as much as possible, he is still medically 'fragile' and shouldn't be around a lot of people when he is still fighting a serious infection.  Thus I have to ask everyone's indulgence in letting us keep Griffin in a little 'bubble' for the time being.  Our family is going to take a little time to adjust all living together under one roof -- what a dream!!!  I will try and keep everyone updated on the blog and let us all continue to pray that Griff's extended hospital stay will soon be a distant memory when we see him running around healthy and thriving.  I am forever grateful to all of you, and Griffin is one lucky little boy to have so many earthly angels pulling for him.  Love to everyone!

-Sheila

Think Good Thoughts! - August 12, 2008

What a day.  The tech from Nuclear Medicine came by around 9:30 to inject Griff with the radioisotope/contrast media.  It looked like something out of a movie -- it was in a syringe encased in a thick silver casing.  Everyone made sure she did it nice and slow, b/c we don't want to lose that scalp IV.  Then they plastered stickers everywhere -- on his crib, on his monitors, on his IV pole saying he was "radioactive" until August 15th.  How many people can say they've been radioactive, let alone at 13 days of life???  They gave me a sticker to keep for his baby book.  It'll be a pretty cool "show and tell" item in the future.  For the next 3 days Griff's diapers are considered hazardous and we need to use gloves to change him and dispose of them in a special receptacle.  Wow.  Anyway, Griff was supposed to go for his scan at 1:30, but wouldn't you know they didn't take him until after 4, so again it was a day of agonizing waiting.  As luck would have it, they came to take him while I was pumping so I said "just go and I'll catch up with you."  Thus ensued a fairly stressful pumping session, followed by my running through the St. Jo's tunnel (SO not fun with lactating breasts) trying to find my baby.  Radiology had moved, and I'd never been to Nuclear Medicine, so it took a while, but I finally found my guy.  He was transported in an isolette with portable monitors, etc.  Once there, they put him on what looked like a CAT scan stretcher and literally taped him to it.  They put a towel between his legs and taped them to it to make them stick out straight, and taped his head so he was looking straight ahead.  He handled it all in typical Griff fashion -- stoic and adorable.  The women in the room (the tech and his nurse) could not stop commenting on his cuteness and how easy he was.  He was perfectly still during the procedure and we headed back to our home base.  As soon as we got there, I changed his diaper and lest you think Griff never makes a peep -- he is NOT a fan of diaper changes.  He hates having a dirty diaper, but since he is usually changed right before he gets fed, he is not a happy guy while getting cleaned up.  I swear he looks at me like "Mom, can't the changing of the pants wait until after I eat?"  Speaking of which, he is eating like a champ.  Any worries I had that his prematurity would affect his suck/swallow/breathe ability -- not uncommon in late preterm infants -- was COMPLETELY unfounded.  He nurses and takes a bottle like a pro.  In fact, he generates a lot of chuckles among the nurses in his room when he takes his bottle b/c he gulps it down like he is starving.

As far as the results of the bone scan, I wish I knew.  When we were having the scan, the tech -- who was so sweet -- called the radiologist and told me he usually leaves at 5, but b/c it was a bone scan on a neonate, he wouldn't leave until he'd had a chance to read it.  When she thought she'd gotten all the views he would need, she called to make sure and by the time she got off the phone she said "he's dictating it right now."  Well, I waited around until 6:30, when visiting hours are over, and still no word.  The NICU Attending on tonight knows me very well, and said he'd keep checking.  I just called, and there is STILL nothing in the computer.  It has been dictated, but needs to be transcribed and uploaded to the computer.  It's maddening.  So much, like Griff's entire treatment course, hangs on the balance of this result, and it's there and we can't get it.  I'd like to say "oh, it must be fine or the radiologist would have made a point to call and tell the attending," but that's so not always the case.  So we're back to playing the waiting game.  The good news is, the bone scan was a total non-event and Griff did beautifully.  Now let's just pray the scan is completely normal, and his IV keeps holding out as his little afebrile negative-culture eating-great self continues to thrive.  Think good thoughts!  

-Sheila 

"Total non-sequiter, but check out my eyelashes."

      Griff getting contrast: "as long as Mama holds the binky in, I'm okay."

RADIOACTIVE!!!