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!!!

Monday - August 11, 2008

Today was a very busy day, but it felt like I spent most of it waiting -- waiting for Dr. A to come by.  It got so the nurses would pass me in the hall and say "did he come yet???"  He was incredibly busy, and I think rounded on all the ID patients at CHOC (seriously) and finally made his way to the NICU around 6 p.m.  My Dad was there holding Griffin and Griffin was putting on a show -- making all kinds of adorable faces in his sleep.  Now my hope this whole time has been that Dr. A would say that we don't need a full 14 day course of IV antibiotics, or something akin to that which would make me feel this infection is less serious than everyone seems to think it is (denial anyone?).  He saw me, walked over to me, gave me a huge hug, and said "he needs a bone scan."  Now, for those who don't know what that entails, by little baby is going to get radioactive dye put through the IV in his head (he will be considered "radioactive" for at least 24 hours -- maybe longer -- so even his diapers will get special treatment) and transported through the tunnel to St. Jo's multiple times for a series of films to determine if the infection has attacked his bones.  B/c it was ordered at 6:30 at night, we have no idea when he will get the study -- could be at 7 tomorrow, could be at 3 in the afternoon.  And lest I forget to mention, the IV in his head is a fresh one.  When Pernilla (if I could handcuff her to me I would -- I am so dependent on her) went to flush it she said "nope, it's done.  Let's take it out, give him his first shampoo, shave and put in a new one."  I was a little scared to shampoo his little head, but she is really good at making me do 'normal baby things' with him, so we washed his hair and I CANNOT express how absolutely adorable he looked with his hair all "fluffy" and free of the tape, ultrasound goop, etc. etc.  The words that immediately sprang to mind were "devilishly handsome" which I know might be weird for a baby, but so fitting for him.   

 

Anyway, Pernilla put in another line and we all breathed a sigh of relief.  The scalp line that we pulled, which was put in by Denise (to whom I will forever owe a huge debt of gratitude, and who refuses to take any credit and just says "it was luck" no matter how many times I counter with: "NO! It was skill") lasted for FIVE days.  That is incredible.  No one in the NICU could believe it, given how fast Griff was blowing through his lines, so I had great hopes that this new one that Pernilla placed today would last maybe (hopefully?) as long.  Well, now that we know that radioactive dye is going through it tomorrow, I don't think that's very likely.  So we will have to search for ANOTHER line site in his little scalp.  Dr. A is of like-mind with me, that putting in another central line is something we want to avoid at all costs if we can, however if G's bone scan is positive, he will need AT LEAST 5 WEEKS of IV antibiotics, so obviously he will have to get taken to the OR for a broviac or some similar long term access device.  If the bone scan is negative, maybe, just maybe, Dr. A might think about lessening Griff's course of IV abx.  Maybe.  Pernilla asked him point blank about that and he said "I don't know yet.  I need more information."  The good news is that I trust Dr. A completely.  He is extremely well-read and when I tried (just a little bit) to block the bone scan (I am OBSESSED with saving G's scalp line) he cut me short by saying "you give me a positive central line culture, a positive peripheral culture, and I'm sorry but I'm going to work you up.  If it wasn't you Sheila, but just a regular patient's parent, we wouldn't even be having this conversation.  I would be ordering the bone scan immediately.  I have to do right by your son.  I know your concerns but we can't take the chance of missing a bone infection."  Well, when he put it that way!  But it is still scary to have him want such a "serious" test, which will probably decimate his IV, which I am seeing as his life-line right now, especially when, as Marnie said to me on the way home: "If Dr. A wants it, you know it must REALLY be necessary."  So we're back to waiting.  Please please please pray that Griffin sails through the bone scan without a problem and that it is unequivocally undeniably without a doubt completely normal, and that somehow, someway, his IV stays, or should it go (can you tell I like to cover my bases?) they are able to place a new stable line easily.  My poor little guy -- what an ordeal he was been through.  He's not even 2 weeks old and he has gone through more in that time than most people do in their entire lives, and he has done it all while showing a fortitude of personality and strength of spirit that has charmed everyone, and made me feel incredibly humbled and indescribably honored to be his mother. 

-Sheila

PHOTOS - August 10, 2008

Fred and my Dad went to see Griffin tonight.  It had been almost 48 hours since Fred had seen Griff.  Regan has become VERY attached to her Daddy, and he has been hesitant to leave b/c she wakes up sometimes and wants to know exactly where her Daddy is, but Fred was having severe withdrawals so he made the trek.  Speaking of "making the trek," we are so fortunate to be so close to CHOC.  I feel terribly for the families that have to drive from far away to get to see their babies.  I've met several of them since we've been in the NICU and my heart aches for them.  Especially those that have other kids at home.  

Fred said Griffin was sleeping peacefully and had taken a great feed right before he got there.  He was there during the doc's p.m. rounds, and again it was reiterated that they want 14 days of I.V. antibiotics.  I am so anxious to see what Dr. A says tomorrow -- maybe he can convince them otherwise!  I hope he will throw a ton of literature at me that says that 7 days is MORE than adequate and an additional 7 on p.o is completely appropriate.  Not too much to ask for, right???   

-Sheila

FOR MORE INFO ABOUT TODAY, AUGUST 10th PLEASE READ THE NEXT POST AS WELL.

Sunday Update - August 10, 2008

I wish I felt as positive today as I did yesterday.  I think I hit the wall maybe.  First of all when I came back from a pumping session Griffin's nurse told me that his scalp IV wasn't flushing very well, and she was considering taking it out and looking for a new site.  In adults I know it is protocol to remove a peripheral IV after 3 days to decrease the risk of phlebitis, etc., but in the NICU we keep PIV's as long as we can b/c IV access is so much more difficult in these little babies.  The NICU Attending for today told me he feels very strongly that G will need a PICC line to complete his course of antibiotics.  If all goes well and Griff remains afebrile with negative cultures, the earliest a 14 day course in-house would get him out is August 21st.  Two different ID attendings recommend a full 14 day course of in-house IV antibiotics, and today's NICU Attending strongly agrees that that is the safest course of action.  Until today I would have agreed, but now I just want him out of the NICU and home.  There will be a different ID Attending rounding this week and if anyone would be more amenable to a shorter in-house course and home on possible p.o. (oral) abx, it would be this doc.  True he is somewhat of a "cowboy," but he is also extremely smart and well-read so I may be inclined to go with his rec -- provided that is what he indeed thinks is the best course of action.  He might very well say G is too little and the infection is too serious (S. aureus can be very nasty) to do anything less than a 14 day course of IV.  Which brings me back to the reason I feel less hopeful today -- we are faced with the same problem, namely, how to get multiple days of IV antibiotics into a baby with tenuous IV access.  A PICC line scares me to death, and that's not half as much as a broviac or cut-down scares me -- all of which are things being considered in terms of how to deal with Griff's "issue."  The whole reason we are in this situation is b/c of the original line (UVC) that was placed and got infected, and I feel like giving him a new line is just opening him up for another nosocomial infection (infection acquired as a result of medical intervention).  As I was holding Griffin today and looking at his beautiful face, I just wanted to pull out his scalp IV and take him home.  

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I took a break from blogging to wash some clothes and then called the NICU to check on Griffin and his nurse said he is acting very fussy, which is unusual for him b/c he is usually a very happy little guy.  And that says a lot about his disposition seeing as he has been poked and prodded so much.  I am hoping it is just b/c he is uncomfortable from the bleeding diaper rash he has (yes, the kid cannot catch a break!) and not from a new infection brewing or another fever about to rear its ugly head.  PLEASE keep Griffin in your thoughts and prayers.

-Sheila

Happy Saturday - August 9, 2008

In keeping with our pattern (can two days in a row of something be called a pattern?), I went to the NICU and Fred stayed home with Regan.  Griffin had a very good day!  He nursed really well for about half an hour, and then took more pumped milk from the bottle.  And best news of all: he remains afebrile and his IV is STILL in place and flushing "like a dream!"  The ID Attending who is on for the weekend recommends a 14 day course of IV antibiotics starting from the first negative culture.  She also wanted another peripheral blood culture which they drew before I arrived.  His nurse, Cindy, whom I remember fondly from my days as a resident, said he did great -- just happily sucked away on his 'sweeties' (pacifier dipped in sugar water).  The formal read on the echo came back: normal!!!  I feel overwhelmed with all this good news -- after feeling like the rug was pulled out from under me, and being in a constant state of intense uncertainty, it is strange to feel like things might be normalizing.  I hesitate to even type this b/c I am so scared we will again take 2 steps back.  But I am determined to at least meet Griff half-way, and if he can make such physical strides over the past few days, the least I can do is work on some positive thinking -- NOT a usual mode of operation for me! 

One funny moment today: it was VERY clear that I have been spending the past few years changing girl diapers.  During one of Griffin's diaper changes, he decided to pee and, not having taken the necessary precautions one might take if they are used to changing a boy, he managed to get it EVERYWHERE -- on his leads, on his shirt, on his sheets.  His Auntie Marnie, who was there for a visit, thought it was quite amusing (she has 2 boys btw).  I swear Griffin winked at her.  It was great to have Marnie there.  We did residency together at CHOC, and she can empathize with my situation like no one else -- her youngest son Mitchell had a heart transplant about one month before his first birthday (he is now 2 1/2) and he is doing amazingly well.  Most of all she understands how hard it is to have one child at home, while one is in the hospital.  We had lunch together in the illustrious CHOC cafeteria and had many flashbacks to our call nights as residents.  We felt so old seeing the current residents in their scrubs, grabbing lunch in-between their patients.  It's hard to believe it's been FIVE years since we finished residency!

We had another very special visitor today.  David, a dear friend from St. Paul's came by.  He is such a gentle wise soul, and practices what is called energy medicine.  I have never seen this in practice before, and I know as a doctor who was trained in traditional Western medicine I might be expected to be more skeptical than I am, but I wholeheartedly embrace the exploration of other disciplines of healing, and felt honored to have him work on Griffin.  It was truly amazing to see.  Griffin literally seemed to breathe easier as David worked on him, and he even treated me to a little energy healing, and taught me some techniques to use both on myself and my children.  Seeing as the Neurosurgeons at CHOC are strong proponents of Eastern medicine techniques as an adjunct to their traditional care -- and you can't get more hardcore than a neurosurgeon -- I think I'm in good company! 

All in all it was a great day -- look, I'm being positive! -- and I am hopeful we are on the upswing!  Again, many thanks to everyone for all their prayers and positive thoughts.  And a special thank you to all the wonderful ladies  who have gone above and beyond, dropping off groceries and breast feeding supplies and magic pants (you know who you are).  It means more than you know!  

Oh, and since I didn't bring the camera with me, I don't have any photos to post, but I think Daddy might be taking a trip to CHOC tonight (he has Griffin withdrawal) and hopefully he'll snap a few of our little looker.

-Sheila

Update and Cute Pictures! - August 8, 2008

Well, as anyone who is a parent knows, kids like to keep you on your toes (totally unintentional rhyme there).  Grif settled down a lot today (more on that later), but Regan has decided to let us know that she is in need of a little more TLC.  Last night was VERY hard for her.  She was up most of it, and Fred took care of her and let me sleep in between pumping sessions.  At one point when he was sitting by her bed trying to soothe her to sleep she looked at him and said "I'm very glad you are home now, but I don't know if you love me anymore."  He said it broke his heart b/c it wasn't said in a bratty "you don't love me anymore, now let me run with the scissors" way, but in a very solemn sad way.  Of course when he shared that with me this morning it broke my heart, so we decided we had to do things a little differently from now on.  Fred stayed home with Regan, and I went to the NICU to be with Grif and stayed only until around 2 p.m.  B/c Pernilla (I will never stop singing that woman's praises) was his nurse again today, I felt very comfortable leaving b/c I knew he was in excellent hands.  Right now Fred and Papa and Regan are swimming, so I have a moment to "blog."  

As for Griffin, we were thrilled to learn that we do NOT have to do a bone scan, b/c his sed rate was fine (yeah!).  His labs are looking better and he remains afebrile.  I am still holding my breath that the culture which was plated yesterday at 9 a.m. stays negative.  Needless to say, I will jump anytime the phone rings!  As of when I left the NICU we didn't have a "formal read" on the echo, but as I said yesterday the preliminary looks good so we are thinking positively.  And wonder of wonders, his scalp IV is STILL in place!!!  I didn't even want to vocalize this to Pernilla, but she said it first: the site around it looks even less red than yesterday, and it is flushing like a dream.  This weekend will probably be the most nerve-wracking of my life thus far b/c Pernilla is off (yes, I have come to depend on her), so if he loses that line and we have to start another one, I'm not sure who is on and if they will be able to do it.  So, in other words: keep those "stable peripheral IV" prayers coming strong!!!  We're still not sure how long he will need the IV antibiotics.  The countdown starts from the first negative culture which we hope will be yesterday at 9 a.m., but, and here is where the 'art' part of medicine comes in: each ID Attending has a different threshold for how long he should be on them.  I don't think anyone, even the most 'cowboy' of attendings would opt for less than 7 days of in-house antibiotics, but my ID Attending Angel (whom I descibed yesterday), said she would probably go for 14 days, as would a few other attendings, however the doc on next week (whom I love and trust) is a little more "gutsy."  However I am not in a gutsy mood these days, and as much as I want Grif home, I also want to blast this infection to smithereens and if that means keeping him hospitalized longer to kill it completely, so be it.  Of course the longer he is in the hospital, the more risk there is of him picking up another infection, so it really is a judgment call.  I will have to talk with the ID doc, and see what we can come up with, provided all else remains stable.  

Griffin had some visitors today.  Amber (my amazing friend who has gone far above and beyond the call of "friend" duty, and is our own personal webmaster -- obviously everyone who knows me knows I have NOTHING to do with how professional our website looks, that is ALL her) and her equally phenomenal Mom (and Grif's honorary Grammie) Susan came to see him.  He showed off making lots of cute faces, and then proceeded to make eyes at them while his diaper was being changed.  B/c I see G everyday, I don't see the incremental changes in him, but Amber kept remarking on how much better his color looked since the last time she saw him -- a lovely observation!

Well, I'm off to pump, and speaking of pumping: Grif was at the breast for about 30 minutes today and latched on beautifully several times.  I was very proud of him.  It will be surreal to nurse him without having to maneuver around an IV, worried that I will somehow dislodge it (no matter how many times Pernilla reassures me), or change his diaper without all those leads.  I can't wait!

I am convinced that all you wonderful people thinking and praying for Griffin are sending him the positive energy he needs to get better, and for that I am forever grateful.  I also want to thank everyone who has emailed us and offered to help in any way they can.  It is said the measure of a person comes out in a time of crisis, and I can say that as far as our friends are concerned, everyone has shown us more generosity and good will than we could have hoped for.  Thank you so much.

-Sheila

As Sheila said, my mom and I had the privilege of visiting Baby G today. I must say again that he is A D O R A B L E!!! We even got to see his beautiful eyes. He has such a sweet disposition. It has been a week since i last visited with Baby G and he is looking a million times better (my non-medical assessment). Below are a few of the pictures i took while we were there. Enjoy!

-Amber

Keep your prayers coming! - August 7, 2008

Before I post an update, I have to say a truly heartfelt THANK YOU to everyone for sending us their positive prayers and good thoughts.  It was so wonderful to come home tonight and see all the posts on the website, and all the emails, wishing little Griffin better and home soon.  It means so much to our family and we feel so blessed to have so many people pulling for our little guy!

As for today, once Griffin's blood culture from the line (which they obtained right after his fever) came back positive for gram positive cocci in clusters which we now know is Staph aureus (for the docs reading this, it's MSSA -- forgive me for the "doctor speak," but it's the only way I know how to deal with this), they drew a peripheral blood culture and switched his antibiotics to Vancomycin (now changed to Ancef).  Well, the peripheral blood culture is also positive, which means the infection is more serious than we were hoping.  We have another blood culture from this morning and let's all say a collective prayer that it is negative so we can feel like we are moving in the right direction.  Plus, we can't start the all-important "Antibiotic Countdown" (i.e. Griffin will need 7 to 10 to 14 days -- they haven't decided yet -- of IV antibiotics ONCE we have a negative culture).  Anyway, as luck would have it, while the docs who are taking care of Griffin were discussing his case, the Infectious Disease Attending (who just happens to be someone who was in the class ahead of me in residency) overheard them say Baby Boy Ford and she said "WHAT'S GOING ON???"  I had run into her in the hall 2 days before and we joked that she could only come by and see him for a social visit -- not in a professional capacity.  Well, I guess Baby G really wanted to meet her, b/c he started brewing this infection shortly thereafter.  Anyway, she said immediately to the team: "just so you know, I am so consulting on this case!"  And we are so grateful to her for that!  She told us she wanted a cardiac echo to investigate whether the infection is in his heart, since that is a risk with S. aureus and is standard of care.  She also said a bone scan is in order, but, given his age, and the fact that a scan would require the injection of contrast media which (a) wouldn't be so great in a baby less than 2

 weeks old -- not good for the kidneys!, and (b) we want to save his IV for his antibiotics, she is willing to wait until we get the results of tomorrow morning's labs.  Please pray that they are good, b/c the thought of contrast media being sent through the IV in Griffin's scalp is terrifying to me.  The prelim report on the echo looks good, but it hasn't been formally read by the cardiologist (but the tech didn't write down anything after he did it and they usually do if it's horrible), however I am holding my sigh of relief until the formal read comes down.  Hmmm, what else???  His nurse today was the amazing Pernilla (she's from Sweden, hence the unusual name) and I cannot express what a tremendous relief it was to have her taking care of Griffin.  I have basically made her promise to take care of him any time she is on.  And tonight he has Ken who is equally as good.  If there is one thing this whole series of events has taught me, it's what a huge impact nurses make on the care of your child.  They are ones there minute to minute and as I've said before, we are SO BLESSED to have the best of the best at CHOC taking care of Griffin.  They have been incredible and we are so grateful to everyone.  Although it's hard to keep running into people I knew from residency and have them look at me with my "civilian" clothes and haggard face and say "what are you doing here?" and have to tell the story over and over, it has also been a blessing b/c I know how devoted these people are to their job and, most importantly, their patients.  Although I would like to think G is getting a little extra TLC b/c he is my son and everyone knows me, I know this attention to detail is something everyone gets.  And, if I can ask for one more thing: please send "positive peripheral IV" thoughts and prayers our way (I don't ask for much, do I?).  The big overlying issue in this whole thing is that G's IV access is so tenuous.  We have to hope we can 'peripheral IV' our way through this infection, b/c a more permanent line (which isn't even an option until we get a negative culture) doesn't seem likely given that 3 PICC line nurses have looked him over from top to bottom and basically said "there's nothing there."  Oh, and can I also put in a "no fever" request as well???  Grif's last fever was yesterday at 11 a.m. and I'd like to keep it like that!  And now for some happy news: he ate like a champ last night -- so much so that we were able to pull his NG.  Yeah!  And he opened his eyes more today than any other day and they are so beautiful.  I think they are going to stay blue b/c they are so light.  So I'll have my brown eyed girl and my blue eyed boy.  

I know so far this blog has been completely from my POV, but Fred has been there every step of the way.  He has always been my rock, and never more so than over the past week.  He is such an incredible man, and is handling this situation in a typical "Freddie-way" -- charming everyone in the NICU, putting on a brave face for his mess of a wife, and being a never-ending source of support for the whole family.  As for Regan, when I said before that Grif was my hero, I should have said Regan was as well.  For a little girl who is used to having her Mommy with her 24-7, except for a few hours a week at preschool, she is doing remarkably well.  It's like she knows she has to be strong, so she just does it, although you can really see how this whole experience has taken a toll on her.  She was so excited to get to see her baby brother come "the end of August," (and we had so 'prepped' her for that), that this whole turn of events has turned her world upside down.  There is no way I would be able to spend so much time at the NICU if it wasn't for Papa and Oma taking care of Regan.  

Again, thank you so much to everyone who has sent their support -- we truly appreciate it more than we can properly express.  Know that your words, thoughts, and prayers are making an impact.

-Sheila

Our girl conked out on the couch last night.

Our boy conked out in Mama's arms today.

"I'm working on nursing directly from the source, but until then, I'm learning to take the bottle like a champ!"