2010 UGGGHHH!!!

So while Michele has been updating you with the wonderful goings on around our family holiday time (snow, presents, nana + bubba, family time) I get to tell you how 2010 is ending.

So last Monday evening (12/20) my back went in to a spasm like I have never felt before. I didn't really sleep all night and on Tuesday morning I was in the worst pain I have ever felt. Needless to say I called a chiropractor and he got me in at 9am - come to find out I had a herniated disk (L5) and pinched nerves. So he worked on it and did some test and x-rays. Then I went to him every morning from Wednesday - Friday to try and straighten out my back. Come to find out from the x-rays and tests, my lower back  (specifically L5, L4, and L3 vertebrae) has had lots of years of stress on it and is compensating by growing calcium deposits toward each other. Essentially my spine is trying to fuse itself together to make sure that it can keep my walking. Obviously this would not be very good for my flexibility and it would keep me in a decent amount of pain. So the chiropractor and I are going to meet about 20 more times in the new year to hopefully work out why my lower back is receiving such punishment.

This put me in a not very good place all of last week and in to Christmas on Saturday - couldn't really sleep for longer then a couple of hours each night and any time I was in one position for longer then about an hour, moving was very difficult. While this was going on Riley got another cold - stuffy nose, unable to breathe, coughing up mucus, etc, etc - on Tuesday night. So that really stinks for her and Michele, because I really couldn't help as much as I would have liked to due to me not being able to pick up a kleenex never mind a 9lb baby girl.

But then Christmas morning with my family came and it was awesome - Zoey is very very deliberate present opener. She wants to admire each gift and make sure that each one gets its own due - while frustrating, it is one of the qualities of my oldest little girl that I love the most - when she is intent on something, there is no getting her off of it. So we were enjoying our day when during the Celtics-Magic game the TV started to fritz and then all of a sudden my father and I noticed that there was water pouring out of the light fixture right above the TV. Come to find out the guest toilet upstairs had overflowed and flooded the bathroom, which in turn flooded part of our living room ceiling. Everyone jumped up and did a great job - Nana took the baby, Zoey woke Mom from her winter's nap, Dad went to the upstairs bathroom and shut off the water/shopvac-ed the standing water up, duke licked himself, and I moved the TV and tried to catch the water.

So we took the light fixture out and poked holes in the ceiling so the water wouldn't collapse the whole ceiling. We called our insurance company yesterday - Allstate - and I dealt with someone yesterday and a claims specialist today and thankfully they are going to cover some expenses. (WAY TO GO ALLSTATE). Needless to say we had to laugh, because we couldn't cry about it. We worked some fans throughout the night in multiple areas, pulled up some carpet to dry it and the padding out, and have caulked some areas in the upstairs bathroom so hopefully if it does happen again, it just puddles on the tile upstairs.

So while it was a ridiculous Christmas story, it was our Christmas. Thankfully my parents were here or I don't know what Michele and I would have done with just ourselves and the kids. This incident does put a pretty neat little bow on 2010 for the Jacobs family thought and fits right in with what we have had going on. I'm sure you all realize by now that we are all greatly anticipating 12:01am on Saturday morning. A new start can't be the worst thing for us.

Thank you all again for the love and support that you have given us this year - hopefully you have some more left over as Riley will be having her surgery early in the new year and Michele and I are going to have to try and figure out how to deal with all of this while both working full time (mom, went back to work today - she was/is heartbroken about it, but better heartbroken, then bankrupt).

Christmas

Today is the big day, and can you believe we are having a white Christmas?  I honestly cannot remember the last time we had a white Christmas even when we lived up north.  I am just glad that my girls were able to experience this.  We'd been checking the weather reports yesterday and Zoey was asking everyone if they believed.  I guess since we answered that yes, we do believe, that's why we got the snow.

I have to say that Zoey make take the record for the slowest present opener ... ever!  Not only is she a slow present opener, she's also quite selective.  Instead of taking the present right in front of her, she has to go 4 presents deep.  Then when that present has been opened, she will go to the far right hand side of the tree.  If anyone else is opening a present, then she has to wait or assist with that opening too!  I think Josh was about to lose his mind with all the waiting around.  Despite the fact that we got her a new mattress set in order to convert her bed from a toddler size to a full size bed, the thing that she loved the best was the Barbie band-aids - crazy kid!  After opening the gifts though she has been loving her Mobigo from Aunt Nellie (thanks Aunt Nellie!).  Got to love a teaching tool disguised as a toy

Christmas Eve

We've had a very nice day today ... I'm sure Zoey knows this is her last chance to make a positive impression on Santa, so she is making the most of it.  Man, what are we going to do on December 26th when we don't have the to hold over her head any more?

We took Zoey & Tigger to see Tangled at the movie theater today and Zoey.  Zoey was living the good life with her popcorn tub that was bigger than she is!

We had our 10th annual Christmas Eve dinner at Benihana.  I thought Riley was going to sleep through the whole event, but she finally woke up for the end so that I was able to juggle her and finishing my fried rice with my chop sticks ... go me!

Tigger

Zoey is the lucky pre-K kids who got to take Tigger home for the winter break.  Zoey's classroom at school is called the Tigger class, so naturally, Tigger is the class mascot.  The teachers have asked everyone that is taking Tigger home to provide a page in the Tigger scrapbook.  Now, we've only had him home for a couple of days, but Tigger is sure living the good life!

12/22/10

We had our bi-monthly cardiologist appointment today.  Riley is up to a chunky 9 lbs 15 oz.  Things are progressing nicely with her and Dr. Border is recommending that her next appointment will be like a pre-op assessment.  They will do an echocardiogram and who knows that else to complete that assessment, but we'll take it as this means we are one step closer to setting a surgery date.

Zoey had her Holiday Show & Party at Appletree ABC for her Pre-K class today.  The kids performed several songs, like Rudolph and Feliz Navidad.  They were absolutely adorable belting out their songs together.  After the performances, they kids got to celebrate with a small party will yummy stuff like decorating their own sugar cookies.  The kids did a book exchange and the teachers gave them all goody bags so they were all way excited.

Josh & I had a meeting with Riley's daycare teachers today too.  Luckily the manager has had experience with a g-tube (they said the kid wouldn't live past 6 months and he's 11 years old today!)  but the actual teacher, Ms. Nadia is definitely a bit nervous.  I typed out a 3-page instruction manual, complete with photo instructions with arrows for the feeding pump, so hopefully that will help.  I told her that after a couple of weeks she'll be an old pro at handling Riley.  The upside is that they have a small enrollment of infants right now, so Riley will be the 5th baby in the room, so that makes me feel a lot better.

Getting Caught Up ...

Okay, so I have fallen behind on the posting (again), so let me get caught up on the happens in the Jacobs' Household.

12/5/10


We went Christmas Tree shopping on a Sunday, so we had to work around the football games.  We did find a beautiful tree, unlike last years tree where a huge hunk fell out when we got around to decorating it!  It was a beautiful sunny day.  We debating about getting a different style tree (I have no idea what the different types are called), but opted to stick with our normal type for Riley's first Christmas tree.

12/12/10

Yet another football Sunday, we got around to decorating our tree.  Zoey had a good time helping Riley to "put up" ornaments; basically Riley sat in her bouncy seat and slept through the whole thing.

12/12/10

RILEY'S 1ST SNOW

It wasn't a big one, but it was her first glimpse of the cold white stuff.  It was a pretty steady flurry for this time of year

12/17/10

Riley had her every other week doctor's appointment today where she weighed in at a whopping 9 lbs 10 oz!!  While she is getting over her cold for the most part, she does have a mild ear infection in her right ear.  Which would explain her fussiness yesterday.  So we've added an antibiotic to her medication list, and hopefully this will do the trick

12/10/10

So I think Riley might actually be kicking this cold (finally!).  Although we had a rough night last night; she & I were basically up from 1:30 am to 4:45 am (give or take).  Sadly TV programming ends at 3:00 am, but I was lucky to find a wacky movie on so I had something to watch then!  During the day, Riley's symptoms are pretty mild ... not much of a runny nose right now, or at least the times between runny noses are fewer and further between.  We're just about at that 2 week mark, so I guess the doc was right about that time frae.  According to the Pediatrician and the Cardiologist, they are seeing greater numbers of RSV right now so we are so lucky that our insurance approved Riley getting the Synagis shots, as she is actually getting the antibodies for RSV and now that she's had 2 shots, it's a bit stronger protection.

We still haven't heard anything about the Katie Beckett Medicaid yet, so please keep fingers crossed that we'll get some good news soon.  I'm not sure how much longer we can keep the bill collectors at bay by telling them that we are waiting to hear about the Medicaid program.  Right now it's a total waiting game, and that totally stinks!

12-8-10 7pm

So it was to good to last - 3 weeks to our last family hospital visit Riley Rose is back at CHOA Egleston. So she has had a lot of mucus since 11/27 and Michele took Riley for her 'well' Pediatrician visit last Friday (12/3) and the doctor diagnosed her with 'just a cold - something we just have to ride out'. Then a cardiologist visit led to some blood tests and chest xray to make sure it was just a cold and they got an elevated white blood cell count. So they asked us to just take her back to the pediatrician today to make sure - so a visit to the pediatrician today all of a sudden (with no change in her symptoms mind you) led to us having to rush her to the emergency room to make sure she doesn't have RSV. The same pediatrician that checked her out last week all of a sudden today heard a wheeze in her lungs - I'm all for being cautious with my children, especially this one, but no one else heard a wheeze, her chest xray was clear and everyone here at Egleston stated that even if it was RSV, there is nothing that they can do besides treat it like a normal cold anyway. So my question is what is so different today from last Friday - if today led to tests, then why couldn't we get them last Friday and catch something early if we could have. I am glad that the doctor wanted to take the protective route, but do it when it is protective not after the fact and not just to protect your ass.

Just as I have been typing the RSV test came back negative, so eventually we will get to go home. Again, I am glad people want to be cautious with one of my most treasured people, but let's do it early and catch it prior to it being a problem.

On a good note - while we were sitting here waiting for stuff, my little flower smiled and 'talked' to me, so I talked back and she smiled some more. So I gave her a quick chin tickle and she smiled and 'talked' some more - this brought a couple of tears to my eyes as this was the first time that she had truly smiled at something I did instead of just an involuntary reaction. So we have broken our streak of 3 weeks with no hospital visits and if you are counting (because we are) this is 7 of her 9 weeks of life that she has spent some time in a hospital. But her little smile makes it all worth it - for those 3 seconds that she smiled at me my world was a glow with awesomeness and my happiness could have lit up New York City. My daughter is a wonder to me and even in dark moments can light up my life.

12-8-06

So I am sitting in front of my fireplace holding my newest daughter while watching my oldest daughter sing and dance and behind zoey is our 6 stockings (4 for our ga family and 2 for my parents who come down to celebrate Xmas with us - huge thank you to mrs croteau for producing all of ours and getting riley's done so quick) and all I could think was that our mantle is complete now. I have 2 beautiful daughters a wonderful wife supportive parents and we will all be under my roof in a couple of weeks. I'm sure that I could be happier, but at this moment I don't know how.

Riley Rose

12/4/10

It's been a busy week ... we started the week with a visit from the coordinator for the Babies Can't Wait program to fill out some paperwork.  Yvette, the coordinator, asked a lot of questions about milestones that Riley has reached (she's doing pretty good with them) and medical concerns.  Wednesday Zoey had her dentist appointment and was given a tee shirt for being in the No Cavity Club -- Go Zoey!  She was such a big girl, she went back for her exam all by herself!  Thursday I took Riley for her RSV shot and then for her assessment with the Babies Can't Wait Program.  Being that she is so young, it was more about me answering questions and all of us figuring out where Riley is.  At this point it was determined that Riley automatically qualifies for the program, but we need to wait and see how her development progresses before we start introducing therapists.  I will be visited once a month and contacted via phone by my new coordinator Dena so that we can track where Riley is.  It seems that most of the work will come after Riley's heart surgery and when they do the next swallow study.  Friday was Riley's appointment with her pediatrician.  Other than having a cold, she is doing great and is up to a whopping 8 lbs 12 oz; that's a total of 3 lbs 2 oz gained since birth.  We opted to hold of 'til her next visit for her 2 month vaccines since we'll be back so often.  This is due to her having a cold.

Today was breakfast with Santa day.  Unlike a couple of years ago, Zoey is so NOT afraid of Santa.  She was just loving on him and telling him all the stuff she wants for Christmas.

Next week will be filled with more doctors appointments, but there are far worse things that we could be doing!

11-28-10

So I haven't posted in a while - I realized when I was in Chicago for work (and my newest daughter was rushed to the hospital again) that I hadn't actually just enjoyed Riley for what she is, my new daughter. I had so many concerns running through my brain regarding what we were going through currently and then her future instead of just enjoying some of her in the present.

I love her little grunts when she wants to try and talk. She also can be very active with her arms and legs for a couple of hours every day - it is almost like she wants to get up and run. She is starting to look into your eyes now, which is such a nice feeling to know that she knows us.

I am going to continue to try and enjoy Riley 'in the moment' and not worry about the future. It is difficult as you look at her feeding tube or worry about her having trouble breathing, but there are other moments when she is just being a baby - those are what I have to try and focus on. It is a daily struggle for me, but I will continue to try. Thank you again to everyone for all of their thoughts and assistance, the caring from others continues to overwhelm Michele and I.

Gobble, Gobble

We had a nice relaxing Thanksgiving at home.  Thanksgiving is usually my holiday to host (Love Thanksgiving!), but I wasn't feeling up to it, Dawn invited us to her house but I didn't feel comfortable taking Riley out to an all day social event quite yet (we're afraid she mat be coming down with a cold), so we said we'd do dessert over there.  We had ourselves a 9.5 pound turkey, with all the yummy sides.  Grandpa is visiting so we had company and Riley was all decked out in her Thanksgiving day outfit.  We enjoyed watching the Macy's Thanksgiving Day Parade on TV and just a nice day overall.  Sadly both my and Dawn's turkey's took a little longer to cook than expected, so we ended up having dessert at home.  Zoey was an awesome eater ... something that we continue to struggle with lately, but just for dinner, not everything else.

Josh & I did the whole Black Friday thing ... a first for me, but Josh has been doing it ever since Zoey was an infant and we were up with her for feedings.  Thanks to all of Josh's traveling we had lots of points from Capital One and it was a better deal for us to use the cash option and just buy stuff we wanted/needed then use their catalogue.  I did get a new Dyson and have been vacuuming everything imaginable.  Love my new Dyson!  ... and saved almost $200 on that sucker (yep, pun intended)

Now we are enjoying some time with my dad (who's feeling under the weather), my sister Melissa and future brother-in-law, John.

11/24/10

We had Riley's check up with the surgeon today.  Overall everything looks good.  Dr. Wulkan cut off the anchors from her tummy, so it will be a lot easier to clean now, thank goodness.  Dr. Wulkan told us that if this g-tube breaks we have an alternative that is bubble-less, although it's a little more difficult to put in.  Hopefully this one will stay in tact!

Zoey got a new big girl hair cut today (just below her shoulders).  Her hair grows like mine, which is a good thing for our hairdressers!  She looks absolutely adorable.  She is sooooo looking forward to Christmas and was enjoying the song on the radio.  Last night she sang herself to sleep by singing Frosty the Snowman

We're looking forward to a nice relaxing Thanksgiving tomorrow followed by a crazy Black Friday.  It's been Josh's tradition to actually go out there ever since Zoey was an infant and we were up at 3:30 am any ways!  My sister Melissa and future brother-in-law are coming down for a visit on Friday too, so that should be a lot of fun.

11/23/10

Well, we have ourselves a chunky monkey; Riley is up to a whopping 7 lbs 13 oz (woo-hoo!).  We had Riley's bi-weekly cardiologist appointment today and they shared with us that a "normal" baby should gain about 30 mg per day, and Riley with her cardiac problem should be gaining less ... well she's gaining 28 mg per day so she's kicking butt & taking names in the weight gain department.  We are increasing 2 of her meds in order to keep up with her increased fluid intake.  Now we just need this special compound pharmacy to get all of this stuff delivered to us before we run out.  Tomorrow is our appointment with Dr. Wulkan, Riley's surgeon to check up on her feeding tube.  Maybe he can tell us why they keep breaking.

Zoey had her Thanksgiving Feast at school today, but if you ask her what she ate, all she can remember is turkey & popsicles!  Silly girl.

I found cute Christmas dresses for the girls today after much searching.  Not the matchy-matchy dresses that I had envisioned, but they will work.  We had our traditional Christmas Eve dinner at Benihana that we dress up for ... a tradition that we started by accident back when we still lived in Providence, RI in 2000 (11 years and going strong)

11/22/10

Yea, things have been smooth sailing since the last ER trip.  Josh & I got to go out to see the new Harry Potter movie (yea!) and didn't get a phone call to come rushing home, so that was pretty awesome.  Riley has been sleeping a lot, except for when I want to put her to bed at night.  That is when she chooses to be fussy after being awesome all day long.

I had another visit to the OB/GYN to follow up on the procedure.  Still bleeding, so we are going to try out a 3rd medicine to try to make it stop.  I am wondering what the world record is because I just might be there.  Just a thought.  As long as everything clears up, I won't go back for 4 weeks.

Riley has her cardiologist appointment tomorrow and an appointment with her surgeon on Wednesday.  Of course we are eager to discuss the multiple broken g-tubes with him and see what he thinks.  Funny thing is, my OB (who is awesome) was discussing me with another patient (with out mentioning my name) because her husband is this big deal surgeon at Children's Hospital and the wife said that if we should have any concerns that he'd be more than happy to talk to us.  I think it's so sweet that my doctor was concerned enough to seek out avenues for us.  Well, come to find out this is the wife of Riley's surgeon.  What a small world.

Zoey had a bit of a sassy weekend, which is pretty frustrating for us s parents.  We just want to spend time with our two girls and we end up having to reprimand or threaten to take away toys or privileges from Zoey.  She can be such an amazing girl, so I don't know if it's all the crazy going on, or if this is just her strong willed personality.  Luckily Sunday was a better day than Saturday... the funny thing is that she's totally aware of her behavior, and she knows that we are unhappy about it.  I guess she's just not ready to bend her will to our way of thinking.

Another ER Visit

So last night I tried to have a nice night out at Book Club ... well that was not going to happen for me.  Riley's g-tube broke (again) and I had to take her back to the ER at Egleston.  Luckily Dawn was able to take a ride with me as Josh is in Chicago.  I cannot believe that this tube only lasted 13 days!!!!  F-ing unbelievable ... you can be I dropped quite a few F-bombs before getting there (good thing Zoey was already in bed).

We had a repeat of the last ER visit, complete with the same Radiologist.  Luckily this time we had Jason, the best ER Nurse ever.  Jason had worked for Kimberly Clark, the manufacturer of the g-tube, and he shared with me that despite the fact that we were told (and the doctors actually did it) to inflate the balloon with 5 cc's of water, he said due to the size, we'd be better off with only 3 cc's, that we may actually be over inflating it.  Hopefully this is the problem and we won't be back to the ER in another 2 weeks.  Or maybe it would be 3 weeks as the first time was 1 week, then we lasted 2 weeks this time.

Let me tell you this ... if this g-tube freaking breaks, I will be showing up at Kimberly Clark with the 3 broken g-tubes in hand (Dawn has volunteered to drive me there as they are right in Roswell).  They will not have seen the likes of this pissed off mommy.  I pray for their sakes that the tube stays in tact.

11/17/10

Today we had an appointment with Riley's pediatrician.  She has a blocked tear duct which evidently has a 95% chance of clearing up.  If it still blocked by 9 months, then they may need to surgically correct it.  Hopefully she is not that 5%!  On the up side, her high calorie diet is paying off ... Riley is up to a whopping 7 lbs 7 oz!

Zoey is being a great big sister, but a really nasty daughter.  I am not sure if this is a temporary thing, or if she is just a sassy little girl.  Yep, I am hoping for that temporary option I mentioned before.  I don't understand how she can be so sweet and wonderful to her sister and then in the next moment she shrugs her shoulders and rolls her eyes at me not matter what the subject matter is.  I have to admit that there are times when I really want to pop her one.  Good thing I have self control!

DFACS

Yesterday I spent about 2 1/2 hours sitting around at DFACS on a delightful rainy day.  Perfect weather for that sort of errand.  I'd completed all the forms and had Riley's pediatrician fill out several as well.  Last week I'd been told by the supervisor to bring in all the completed forms and wait for a temporary case worker.  The lady at the desk told me that I had to wait 2 weeks and someone would get back to me.  After I explained what happened the week before, she handed me back my giant stack of papers and said she'd out my name of the list and to listen for my name (LIAR!!!)

In the sitting around part I had plenty of time to observe the people who have to come to DFACS.  What a motley crew that was.  Some people dress like they've just rolled out of bed while others dress like they are going to the opera.  There were repeat customers who recognized one another from their weekly visits.  Then there was the family that broke me heart.  A mom, a young teenage girl and a7 or 8 year old girl.  They came in soaking from the rain, each with a backpack chocked full of stuff.  The mom & older girl each had a roller suitcase and the teenager even had a pillow.  I pray for this family and those like them that they have some place to go and that they are not carrying around all of their eathly possessions.

I finally spoke with a case manager, Ms. Jones (super nice lady) who explained that they have to send out our application as the Katie Beckett Medicaid is completely different and gets approved by a panel of doctors & nurses.  They have 60 days to get back to us and I suspect we will be waiting that entire time.  At this time we have about $175,000.00 in medical bills for Riley and she's not even "repaired" yet.  Hopefully the bill collectors will be understanding!

11-15-10 5am

So I am leaving my family today for the first time since Riley was born. I am going to Chicago for the biggest trade show of my organizations year - so it really isn't something that I can miss. My organization has been wonderful throughout all of this with everyone from our founder on down being incredibly supportive and uplifting. It is going to be phenomenally hard to leave my littlest one - I have just been able to stomach the look on Zoey's face when she realizes that I am leaving for days and now I have to leave another one. It is the life that I have chosen to lead and I love what I do for work, but this is definitely the downside of things. I worry that I am putting to much on my wife, but she is strong willed and a wonderful mother. Her dad (grandpa) is in town so hopefully that will help ease some of the work. I will miss my family dearly, but I will see them again on Friday evening and then next week we will have 4 days to enjoy each other with the Thanksgiving holiday.

11-14-10 9:30am

So Friday and Saturday were phenomenal days for the Jacobs' family. Following Michele's procedure on Thursday evening she was able to enjoy her birthday on Friday as she felt good for the first time in weeks. The procedure seemed to have worked so that was excellent news.

Riley actually started to show a lot more interest in her surroundings on Friday and Saturday - in fact she loves the ceiling fan in the living room and watching it move is a favorite past time of hers. She also has started smacking her rings on her play mat and she follows your face around from side to side if you are talking with her. These are all good signs at the moment, but Saturday afternoon brought some wonderful news.

Dr. Kobrynski, who runs the Southeast Regional Center of Excellence for 22q and who is an immunologist, called Michele. She saw Riley on the Monday before she was released from Egleston and they ran some blood work on the actual day she was released to check for a lot of stuff. Dr. Kobrynski stated that Riley's T-Cells work like normal and that the low immunity that some kids with 22q experience doesn't seem to be effecting Riley. WOOOOHOOOOOOO


While Riley still has a gaping hole in her little heart, she has to eat thru a tube (that happens to burst out of her stomach every once in a while), and she breaths incredibly fast due to her heart condition - she may not have to face the constant sickness that other children afflicted with this syndrome do. This is a huge win for little Riley - we have heard stories where kids are in and out of not only the doctor's office, but the hospital every other week fighting off some different sickness that they contracted. Hopefully the data is right and Riley isn't one of them.


Our friends have been wonderful the past couple of weeks supplying us dinner on a nightly basis - I don't know how to thank them for their wonderful kindness and affection. After we have Riley out of the woods a bit, I plan on throwing a giant party for everyone and at least try to repay the work that they have put in for us. Thank you again for the thoughts and love.   

11/11/10 7:30pm

So Michele and I ended up back at the hospital today as my wife's doctors visit did not go well today. She had a phenomenally low blood pressure, she was still bleeding profusely 5 weeks after the birth and the ultrasound showed that there was still some left over 'stuff' in her uterus. I love my wife dearly, but she pushed it the past two weeks - she has been bleeding severely and getting light headed. I begged her to call her doctor, her family asked her, and her friends asked her. It took her almost passing out multiple times in one night for her to finally do something. Again - I love her with all of my heart - but she has to take care of herself because the rest of us have tried and she won't listen. Hopefully this will be a wake up call for her. We should be going home at some point tonight and she should be feeling much better as soon as tomorrow. Hopefully this will be the last Thursday that we are in a Hospital (if you are counting at home - we are up to 5 in a row). I am really starting to hate the look of scrubs, the smell of the cleaning products, and having to fill out forms that say it is ok if someone dies from a procedure.  You sign those forms without thinking, but your brain actually hears what they are saying and what the paper says - then you go sit in a room and you try and do anything to not think about that awful piece of paper. I have now signed that piece of paper for 2 of the 3 woman in my charge in the past 2 weeks. I just want to stop signing those papers that make it seem like it is ok if someone screws up when they have their hands in someone I love.

11/10/10

So today is the first (and only) day this week where we don't have any doctor's appointments.  I'd like to blame it all on my daughter, but this week 1/2 of them are for me.  We've been enjoying a nice girls day at home ... well, Riley has slept through most of the day so I am assuming that she's enjoying it too.

Ever since the g-tube falling out incident, Riley has not "blessed" us with consistent poops.  It got to the point that Saturday night we actually called the pediatrician's office to complain that she'd hadn't pooped in 48 hours.  Th doctor didn't seem all that concerned since Riley is still making wet diapers (and lots of them!), and overall seems to be doing fine.  She did recommend that we could get a glycerin suppository to try out, which I purchased today.  They look like little soap bullets that I am supposed to put in my kids bum.  Needless to say that I was planning on saving that little gem for when Josh gets home from work, but thank heavens we've now got poop!  Hopefully that stays consistent and I won't have to torture my 5 week old with the soap bullet.

11/9/10

Can anything else go wrong?  I finally broke down and listened to Josh ... I went to see my OB for a 2nd postpartum visit today since I am still having pretty severe bleeding.  It appears that my cervix is still dilated and they suspect that there may be some left over placenta (gross).  So I will be having an ultrasound on Thursday so we can confirm what is going on, and what our next steps would be.  At this point, with out having the ultrasound, it may be a minor surgery or (hopefully) some drugs.  The thing with me is my high blood pressure and that tends to limit the drugs that I can take for fear of making my blood pressure spike.

Riley had her first non-hospital visit with the cardiologist today.  She did great, and they will be monitoring her every other week from now until surgery time to make sure her weight gain is on target and to see if any of her meds need to be adjusted.  I asked Dr. Sallee about the surgeons and doing the surgery at 4 vs 6 months.  He explained that from a study that one of their own surgeons did, there is little difference to the herat between 4 & 6 months, so that is not a concern, it's just a matter of it getting to be a little bigger in size for the ease of surgeons, because even though they have teeny tiny tools, the doctor's hands are still rater large compared to the heart.  He did explain that doing the surgery at 4 mo vs. now, is actually a big difference.  This small amount of time allows the heart muscle to get "tougher" and that will hold the sutures so much stronger.  We will of course defer to the experts on this matter as I am just about the further thing possible form a heart surgeon.

11/8/10

And so it began ... I officially started the process to get the Katie Beckett Demming Waiver for Riley.  I went down to the DFACS office in Atlanta and received an application.  Good thing that I stayed there to fill it out because I did have a question.  In asking my question I got put with a supervisor.  He took the time to sit with me and show me that there were in fact, quite a few more forms to fill out.  I am so glad to have found this man, otherwise I would have done the little tiny application, returned it and then had to go back in to fill out more papers.  There are even 3 packets that the pediatrician's office has to fill out for us too.  Luckily they seem to know what to do, and now I am just waiting for them to call me when the paperwork is completed.  The next step will be to return the entire packet to the DFACS office and meet with a temporary Case Worker.  Hopefully I will provide them everything that they need so we have no hold ups in the process.

Tomorrow is Cardiology day.  Riley will be meeting with her Cardiologist in the Alpharetta office.  I have to say that we are so lucky to have the new Pediatric building right in Old Milton, since we will be going to see Dr. Sallee & Dr. Iannucci on a regular basis it makes it a lot nicer not to have to travel to Kingdom Come and back every week.  Evidently this appointment will take 2 - 2 1/2 hours ... I am not quite sure what they will be doing to the poor baby since they did have her on the CICU floor at Egleston, I kind of figured that they know all about her at this point.  I did receive a packet in papers to fill out today to bring with me (good timing form the USPS!).  I guess we'll find out tomorrow!

11/7/10

Today has been a nice Sunday at the Jacobs house.  We had more "typical" night with Riley waking up a couple of times to get some attention from mom & dad.  We've been enjoying having Riley at home, despite all the tubes and slight drama from the other night.  I am looking forward to the time when we move from a continuous feed to a bolus feed so that Riley will have more mobility.

Zoey went to her friend Kiley's birthday party at Build-a-Bear.  What a fun time she had; I had no idea that you could even have a party there.  It was nice to have some time with Zoey outside of the house and away from her little sister.  Zoey is a wonderful big sister and she continues to amaze me with her loving attitude towards Riley, but I want her to know that she is still special to me, even though she may not get my 100% attention any more.

Tomorrow we are going to try using the back pack setup for Riley's feedings as we are going to make a journey downtown to DFACS to get Riley's Medicaid situation rolling.  I got us denied through the SSA and now have to apply for the Katie Beckett Deeming Waiver.  What an ordeal this is going to be, but hopefully after all the bureaucracy and paperwork Riley will be approved and we will have some assistance with her medical bills.  I literally cannot imagine what those are going to look like.  Cross your fingers that we can navigate this with some ease!

11-6-10

So the other night was certainly a test of our new parenting knowledge and skills. Thankfully I listened in the 2nd to last day of Riley's 1st Egleston visit and after her initial shock Michele performed wonderfully. Nana got Zoey upstairs and out of the line of fire. Anne got Zoey's car seat out of Michele's car so Michele could sit next to Riley on the way to the emergency room and Aunt Nellie got us some of the supplies that we needed during the 'procedure'.

I certainly would never wish what happened to Riley on her, but I am very glad that I could finally do something to help my little flower. She is such a strong girl. Besides having the dirty diaper and a couple of seconds while they took her 1st blood pressure at the emergency room - she was either asleep or perfectly content about what was going on. More poking and proding and almost absolute serenity from our littlest one.

She has been through so much and has so much more to go through, but she is so calm and brave through all of it. I know it is ridiculous to say that a month old has bravery or courage or any 'attributes' that we associate with older humans - but in this little girls case I see it on an almost daily basis. How she sits there and takes all of what is happening to her, I just don't know. She has gone through more trials and tribulations in her first 30 days then I have gone through in my over 35 years and she is taking better then I ever could/would. She is a joy to be around and her simple personality gives me so much strength.

Zoey's pre-k had their fall festival today. Nana, Aunt Nellie, Zoey and I went over for about an hour and she had a lot of fun and won a lot of prizes. She is wonderfully loving and helpful with Riley. She is taking her big sister role and running with it. The wonderful little girl that she has become brings such joy to my life. She will be a wonderful person as she grows and an amazing example for her little sister.

11/5/10 - Back Home Again

cSo come to find out a lot of parents freak out and don't put their emergency g-tube into their kids track when it pops out in emergency situations.  Since we did such a good job the ER doc was all for keeping the one that Josh put into Riley there ... however, the emergency tube sucks compared to her original button (of course we mean a non-popped one).  The difference is that Riley's tube is a short tube with a button like closure on the end that you can detach the feeding line from and close up for bathing & such.  The emergency tube is just a long tube that would stay on her body with no detachable button.  Luckily the ER doc listened to us and they were able to find a replacement button apparatus for us so that they could switch it out and we'd have something that we were familiar with for RIley.

We headed down to Radiology around 10 pm and they injected a dye into Riley's tube so that they could confirm the placement of the new tube.  Josh & were able to stay in the room and were able to see the dye moving through Riley's little system on the screen (pretty cool).  Josh did good, and that tube was where it was supposed to be.  We then had to wait for the on-call surgeon to check her out and give us the good to go.  Dr. Hart Sturgis, who slightly resembled that great T doctor, Dougie Howser came in and checked out Riley; he was confident that everything looked good, but he wanted to call Dr. Wulkan to confirm with him since Riley's g-tube surgery was only the week before.  Thank Heavens we got the good to go, and after waiting around for our discharge paperwork, we were finally able to head home.

We rolled in sometime around 1am.  We had to hook Riley back up to her pump  on a lower feed (only 12 ml per hour vs. 24 ml per hour) to get her system used to the feeds again and to make sure she's have no issues.   Needless to say, as exhausted as we were Josh & I did not sleep so great.  Riley was definitely hungry on the lower feeds and was somewhat restless, making her new grunting noise to let us know how she was feeling.  Around 4 am, we upped her feed to 18 ml per hour and that seemed to help.  The alarm went off at 6 am for Riley's morning medications and we were still exhausted, luckily so was Riley so we were able to get some much needed sleep after moving Riley back to her full 24 ml per hour feed.

Riley is really a little miracle, despite all the chaos last night and noise around her, the only time that she got upset was when her diaper was dirty.  Despite the fact that stuff was freely flowing out of her stomach, she calmed down after being changed and fell asleep and continued to sleep through most of the ordeal.  Today she continues to be amazing and is enjoying being awake and having new things to look at.

11/4/10 - Emergency Room

So, our nice relaxing day with Riley has come to a not so fabulous end.  As I was going to change a poopy diaper (and Lord knows Riley does not like to sit in a poopy diaper), I moved her tubing out of the way and the entire apparatus literally slipped out, formula spewing every where.  Yes, I shrieked in panic, but somehow after that moment I was able to keep my cool and assist Josh with the emergency replacement tube (it's a good thing he had the past experience of helping to repair Mike Robin's nose in the ER).  Thank heavens he was paying attention to the training as I was not there and he did a great job in showing me what to do before this actually happened.  It appears that the balloon that should be inflated in Riley's stomach has popped, hence the thing slipping out.  We were advised by Dr. Clifton to bring her on back to Egleston, but this time to the ER.

So, that is where we are currently.  I guess it's a good thing that we bought the extra hospital parking passes, although I was hoping not the be back here until Riley's heart surgery.  Luckily we seemed to get here at the right time, and were moved back to Room 19 with little to no waiting time.  Which is a good thing since we want to keep Riley away from sickness as much as possible -- we even had a tiny mask on her face to protect her from germs.  Evidently we did the right thing in getting the emergency tube in since her g-tube is so new, this temporary replacement will help to keep the track from closing up on us.

Now we are waiting.  Please keep your fingers crossed that this will be an easy fix and that we will be sent home again.

11-3-10 First Night

So we had Riley Rose for her first night at home. With the continuous feed, Riley Rose slept from 10pm - 6am. No muss, no fuss, and very few coughs - Mom and I kept waking up to see if she was ok, but she was knocked out.

There have been a million heartaches, heartburns, and headaches over the past 26 days of our life - but for me this morning was all worth it. Michele and I were up around 5:45am to get Riley's first meds in to her and change her. About 6:20am, Zoey woke up to get ready for her school day and she came in to our bedroom. By this time Riley was on our bed finishing her breathing treatment (with a nebulizer). Zoey, Riley, Michele and I then got to just spend some family time on our bed. Zoey started to tell Riley about what she does at school and at three different times while Zoey was talking Riley broke into a huge smile - literally the biggest that Michele and I have seen yet. My family was enjoying a morning with each other for the first time - just like other families and many other morning that Michele, Zoey and I have enjoyed before. For the first time since Riley's birth, my heart was filled with nothing but joy and happiness. No concern about hospital payments, my wife's health, my youngest daughters future, or my oldest daughters feelings. Just pure and utter joy that I have never felt before.

While our lives will certainly be more hectic - we will have thousands of moments like this morning that make them all worth while.

11-2-10 7pm

RILEY ROSE JACOBS IS HOME!!!!

I can finally say that all my girls are under my roof. It is one of the highlights of my life. Riley Rose came through our door around 4pm today. Her sister was brought home by Aunt Nellie shortly after that and both sisters enjoyed their first unburdened time with each other.

Zoey has been wonderful so far with her little sister. Very very sweet and loving. She has already read her 3 stories and can't wait to do more. She is very curious about how she can help - even with setting up her feeding and such.

Here is her set-up at home

We have already had her first diaper change at home, her first feeding tube attachment, and her first round of medicines (she got 4 this time). We have 8 different medicines to give her at 5 different times a day (6am, 10am, 2pm, 6pm, and 10pm). It is going to be a lot of work, but I wouldn't trrade it for anything right now. All my girls are under one roof and my life for tonight is wonderful.

We found out today that Riley's brain scan showed that her brain is normal shaped - which is more then I can say for most of the Jacobs'. Her last lymphocite level (a good indication of immunity) was down to 14% - they want it to be at 60%. They did say that this could be due to the surgery though. They are not only researching the amount of lympocites, but are they working.

We have our first pediatrician visit tomorrow morning - and so the doc visits start. We will have at least 1 every week for at least the next 3 months (sometimes 2). Our wonderful neighbors have started to make us dinners - we had an awesome mexican soup from the Robey's last night and tonight was the Mayville's lasagna. We can't say thank you enough to everyone, but we will keep trying to.

11/2/10 - 11:00 am

Today is supposed to be Homecoming Day, but I am hesitant to believe that until all 3 of us are strapped into the car and actually driving away from this hospital.  Josh got trained on the g-tube care and maintenance yesterday after I was home.  Luckily he's a good teacher and was able to come home and share that information with me.  I have to say that I freaked out a little bit - not about doing it myself, but about leaving that in someone else's hands (namely daycare).  What is something goes wrong and we're not there?  I know that the nurse assured Josh yesterday that should the tube pop out, it is not a life & death situation, but I'd like to see any new g-tub mom not be freaked out by that happening.

We are steadily working on whatever the nurses & doctors throw our way today on the ever changing Discharge List (I have yet to see a real list, so I doubt that one actually exists).  At this particular moment, Riley is sitting in her car seat, and will hopefully stay calm enough to sit here for 90 minutes so that she can "pass" and we are take her home in that very car seat later today.  We have a ginormous list of medications that we need to get filled so that we can give her what she needs once we are at home.  I have now mastered the art of fortifying breast milk and mixing up the right calorie formula for the g-tube bag.  I know that Riley will have about 40-million different doctors appointments, starting with her pediatrician tomorrow.  There is no rest for the weary!

Thankfully my sister Danielle is here and can help with Zoey.  Zoey has her dreaded flu shot tonight at 6:00 and we are hoping that we will be able to make it home in time to take her there ourselves as I had to bribe Zoey with going to Bruesters for ice cream afterwards.  Hey, a mom have to do, what a mom has to do.  The poor kid got 5 shots at her August appointment and she has not forgotten that experience in the least.

We have a bottle of champagne chilling  in the fridge and are looking forward to cracking that open later today in celebration of our Riley Rose.

10/31/10 - 11:25 am

So the g-tube guy got here at 11:15 am for our 10:00 am appointment.  Good thing we didn't have anything to do but sit around & wait for him.  He showed us how to operate the pump and associated equipment.  Thank goodness it is very simple ... so easy a Caveman could do it.  We even have a little back pack to hold everything if we need to be mobile.

Now we need to get the training from the nurse on how to handle the Riley part of the feeding.  That's where we need the real help.  Evidently there is a slim chance of the g-tube coming out, but they have assured us that we, yes Josh & I, will be able to put a new one in.  I find that a little freaky, but I'll have to believe them on that.

We are now one step closer to bringing Riley home with our necessary training.  Infant CPR - check.  Feeding pump training - check.

10/31/10 - 10:45 am

So, Riley is having a breathing treatment right now with the Respitory Therarist right now which will hopefully help to dry out some of the mucus in her nose & throat.

 She looks absoluely precious in her ghost costume, it's just too bad that she can't go trick or treating yet, but Zoey is already planning on her & Riley both being witches next year

10-31-10 8:30am

So I just talked with the nurse who finally got Riley into a pretty sound sleep this morning (around 6:50am). She feels it may just be some really bad gas and her tube may not have been venting right - it makes sense with the vegeling as well. She might have been trying to get it out of her body and it just wasn't happening. Now for something I never thought I would say - let's hope my daughter has some bad gas - and not some severe cold that has to be monitored closely.

10-31-10 5:15am

So Riley is doing something called vageling - when she is moving her bowels, trying to get mucus out of her little body, or just cranky she basically is clamping down her whole body. This isn't good as it normally means she isn't breathing, but most of us do it at one time or another. Also, she has a lot of mucus so they have taken a culture of it and sent it down to the lab to be checked for RSV.  It is phenomenally common in adults and healthy older children, but in very young babies it can be pretty nasty - so they want to catch it early. This would certainly delay her coming home.

10-31-10 2:30am

So they have taken Riley to the nurses station to observe her as what I am describing her doing she isn't doing once all the nurses get in here. It has been every hour or 40 minutes now for about 6 hours that she loses her little mind and she can't really get any good sleep.

10-31-10 1:15am Happy Halloween!!!

So I am getting to spend the first full night with my daughter since she has been born. While certainly wonderful to see her, I am working on about 20 minutes of sleep so far as every little cough or whimper from her leads me to believe that she is in distress. I'm worried that we are going to have difficulties at home with telling a cry from a 'I'm in Trouble' cry. She even got to the point tonight where I asked for the doctor to come take a look at her due to her being inconsolable (which is not anywhere in her personality so far) - the doctor and the nurse explained to me that she may be feeling the surgery and new sensatoins fully now since they have essentially weened her off the pain medicine. So I will go back to my little flower now and try to get some sleep with one eye open.

10/30/10 - 9:45 pm

I am amazed that I can finally start to think about bringing my daughter home realistically now.  I am excited to think about what she will be dressed in, and how I will bring her home in the blanket I crocheted for her before she was even born.  It's finally started to be more real and I know that I still have so much that I need to get done in preparation for her homecoming.  Thank goodness for my mom & sister being here to help since I am technically supposed to be on bed rest.  I'm trying, I swear!  But it's very had to comply with.

Thank you, thank you for all the prayers and good thoughts sent Riley's way.  It amazing to know how much she is loved already.

10-30-10 4pm WOW

OK - so the doctors, nurses and Michele and I had a nice discussion around 12:30pm about Riley's future and they all feel that she will be going home on Tuesday, so Michele and I elected to ask for her to stay here. They admitted that someone should have told us about the later rounds time yesterday and when I tried to apologize for my frustration, they wouldn't let me - they really are all phenomenal at what they do.

So Michele and I are going to need to start training on the tube/feeding/taking care of our newest daughter. We also will be seeing an immunologist to make sure that her immunities are good. She will go home on calcium supplements to make sure that she keeps good levels - this is for her heart issue as well as preventing skeletal malformation and seizures.

This step down area is wonderful. We have a private room, with a shower, bathroom, a couch/bed, chair and desk. The folks over here have been wonderful. Just while I was typing this, we have met with the head immunologist who also happens to run the Southwest Center of Excellence for 22q. It looks as though we will possibly be going home on Monday if things keep going good. Also while typing we just heard from the home pump people and they are going to bring all our equipment and train us here in the hospital tomorrow at 10am.

10-30-10 12pm FRUSTRATION!!!!

So I have reached a frustration point for the first time with the administration of my child. While CHOA is a wonderous place that so many people have given so much of their time and energy to - they are some of the worst communicators on the planet. Just for the record it is not just us, almost every parent we run in to talks about not getting the information that we need.

A very quick recap:

According to numerous hospital administrators at Northside and CHOA, due to our insurance we had 72 hours at CHOA to decide whether Riley was staying here and getting discharched to home from step down or going back to Northside to do our training and such. That 72 hours was around 11am this morning.

Well we told them we were coming in after rounds this morning (because we are not allowed in there with her from around 7am - 10:30am every morning) to talk with the doctors and decide what was going on. So yesterday a couple of doctors and nurses tell us that they don't know why Riley couldn't go home in a couple of days - barring any complications and we could probably due step down here. Well with Michele's physical issues (she is supposed to be on bed rest) and other home complications - coming down to CHOA for the next week was not optimal, but we decided that if (barring complications) she could be home by Tuesday - then we would have her stay here. This way she didn't have to go thru a battery of more admitance tests back at Northside.

Well we have been here at the hospital since 9:30am this morning and here is the fun part - a couple of nurses kept coming out in to the hallway that I was sitting in (which was right in front of the door to CICU) and telling me just a couple of more minutes. Well someone finally told me that weekend rounds start and end LATER THEN DURING THE WEEKDAY!!!!! Well if that is the case why were we never told that - Michele and I could have come down early this morning and discussed the path forward.

Riley's nurse finally came out to talk with me as numerous nurses told her of our plight. I explained to her that the 72 hour window had come and passed and she told me that they were making plans to move Riley, maybe later today or tomorrow morning. Without talking to my wife and I?!?!?! I expressed my dissatisfaction with their unilateral decision and told her that we would like her to stay here if (barring complications) they thought she was going to go home by Tuesday and Michele and I was going to get trained. If it was going to be longer we would rather go back to Northside. The nurse said, no - they couldn't envision it being longer then Tuesday. During this time she apologized and said that it would be probably 11:30am before the rounds were thru - I showed her the clock on my computer which stated it was 11:29am. She said that it would probably be another 45 minutes.

So I went to the waiting room to break the news to my wife that she could either stay here and hurt her health or probably not see her child today - she was obviously frustrated. The nurse called a couple of minutes later and said that the PA for Riley stated that she saw no reason for Riley not going home 'this week'. I reminded her that the vagueness of her statement was unacceptable - is it Tuesday or after. She stuttered something and they stated that the doctor would talk to us when we came in to see Riley. I asked her when that would be and she stated that she didn't know.

I know that I should be calm and cool about this and focus on Riley, but my wife's health is falling apart, my older daughter (who has been wonderful) asked me this morning if we all - as a family - were going to the neighborhood Halloween Festival and I couldn't give her an answer, and these folks here are not talking to us about decisions they are making. I'm not asking for a voice in whether she gets X medicine or Y medicine to fix her issue, but when it comes to her future care - I think we should have a say. There are signs everywhere around this place - literally in every room that I have been in - that say 'Be an advocate for your child. Question the doctors and nurses about what they are doing and why.' Then when you actually do that - they look at you like you have two heads and then don't have any answers.

10/29/10 - 7:30 pm

So I went to my OB/GYN today and she has given me some med's to help tighten up my uterus; granted not what she wanted to give my because my stupid high blood pressure limits what I can take.  That, and she wants me to rest with my feet up as much as possible.  That sounds great in theory, but I have a real hard time sitting with my feet up at home while my baby is in the hospital.  Thank goodness for all the help that I have been getting because I don't know how I would have done the basic things like eat and do laundry.

One of the interesting things from today was that the OB has a 22q patient who is in her 20's, is married and doing wonderful and is going to start a family.  This is one of the things that I worry about for Riley -- granted this is a long way off in the future, but I am a mom, so I worry none-the-less.  This patient & her husband are doing IVF so that they can genetically test the embryo's for 22q prior to implantation.  That is the technology of today, I can only imagine what will be possible in 25-30 years from now.  It made me feel good to think of my little girl having an normal adulthood with all of the things that a mom could want for her.  These are things I didn't worry about for Zoey, it was just assumed that when she was grown up & ready to start a family that there would be no major issues.

Riley is healing great and the doctor's & nurses have high hopes of her being able to come home sooner than later.  Now Josh & I just have to prepare ourselves for that reality.  We have so much to learn on how to care for Riley at home.  How to feed her, how to give her medications, how to bath her, how to hold her, all those basics that I always took for granted.  I am sooooo looking forward to learning all of that with her and getting her out of the hospital so that she can really start her life.

This is a video that Josh took earlier tonight at the hospital:

10-29-10 The Day After

So rereading my post and then my wife's post today I was struck by their accuracy, but also how they aren't anywhere close to the feelings that were with me during the moments after surgery. It was horrendous and I could only look at my little one for around 10 minutes at a time before crying. The good news, was it all went great - she had the breathing tube taken out at 3pm (which was early according to the nurses). She started to get medicine in her feeding tube early this morning and she started feeding through it around 1pm today. For the first time in her short life (except for a very short time after she came out) my littlest one has no tubes in her nose or mouth!!!! She is phenomenally happy about it too.

I could not be happier about this for my girl. However Children's Hospital has been an experience that has changed me for the rest of my life. Michele and I have been giving $21/month for about the last 6 years to the Angel Fund here at CHOA due to a story about a mother who had her 2-3 month old out in a courtyard down here at the hospital during a rain storm. A woman asked her what she was doing outside with here baby - the mother replied that the doctors didn't think she was going to make it much longer and her baby (who had never been outside of a hospital since she was born) had never felt rain on her face. The mother couldn't understand how something so precious was going to pass from this world without ever having experienced that. That story got to me and still does, but I didn't get it until I was here.

In the Cardiac ICU there are around 60 children from age 0-4 who all are having some sort of serious heart issues or surgeries that could severly impact their heart function. Last night there was a little boy across from Riley's area who I did not think was going to make it till today. They worked on him from 4pm - 7pm; between drugs for his heart and breathing aparatus it was constant movement around him. He has been here for weeks and his mother sits with him most of every day wondering if this is the last breath her bay will take. Diagonally across from Riley there was a 3 year old boy who had surgery yesterday and when he came back from surgery his parents were here, but he was out of it. When I was with Riley around 4pm - he truly kind of woke up and mom and dad had gone somewhere for their older child - he started crying and screaming for his mom and dad. He wanted something to drink, but couldn't due to the surgery. The nurses tried with all of their special tricks to soothe him, but nothing calmed him down till about an hour later when his parents were finally able to get here. The boy is 3 - I remember things when I was 3; stupid things that impacted me like the first time I remember riding a train or holding a bunny rabbit, this little boy will forever remember waking up from heart surgery and his mom and dad not being there. There are multiple floors and multiple wings of this single surgical hospital.

The people here are wonderful not only in their technical skills, but in their spirit and caring. But even they lose children. I'm not a pixie dust sort of person - I know that children die every minute of every day of every year, but to watch it happen changes what you feel about life and where we fit. My little one is going to go home in days, she is going to snuggle up with mom and dad, she is going to dance with her big sister, she is going to feel rain on her face - so many children won't ever go out the doors again. Michele and I thank you from the bottom of our hearts for all the time and energy that have been put in to thoughts for Riley and us - I ask you that while she is doing good today, please take a second and think of the thousands of other kids here in this building that I am in today who need our thoughts. Every one of them should have the chance to feel the rain on their faces.

10/29/10 - 9:30 am

Josh went to Egleston this morning before worked and shared this picture with me:

Riley's nurses got her a teddy bear and she was sleeping so peacefully snuggled up with her bear.  I am hoping that when I get to the hospital we will continue to see improvements and get closer to moving her back to Northside.

Yesterday

Yesterday was one of the hardest days I have ever lived through.  Mentally I was prepared for surgery day, but emotionally, not even close.  I know Josh shared his take on the aftermath of Riley's surgery, but here is mine:

It was AWFUL.  There is no other way to put it.  I'd been up since 4:30 am so that we could get down to Egleston by 6:00 am to spend some time with our baby, so I was exhausted physically as well as mentally. Riley was sleeping so peacefully when we got there, and they started the surgery basically when they said they would.  Even with the delay to start due to anesthesia, Dr. Wulkan made up the difference.  What was the awful part was going in to see my baby after the fact.

Every part of Riley was hooked up to something.  She had her O2 monitor on one foot, and IV in the other.  One had had a 2nd IV and the other hand was being given blood.  She had a monitor on her head to measure O2 in her brain, a breathing tube taped in her mouth and vital monitors secured to her chest.  Blood was running from her new g-tube and staining the blanket underneath her.  Tears were running out of her glazed over eyes.  NOTHING in the world could have prepared me for that, and this was the easy surgery.  How on Earth am I going to make it through heart surgery?????  I honestly thought I was going to throw up right there in the CICU purely from the stress of it all.

My girl is a tough one though, she was breathing along with the tube and eventually came off it (sooner than later too).  Through the night, they only had to give her 2 doses of Morphine, even though she was allowed a dose every 2 hours.  She must have mommy's high tolerance for pain.  Riley has been through so much in her short little life and her personality has been amazing through everything.  If this is any indiction as to the person she is going to be, I am beyond impressed.  Yes, I know that as her mom I am biased, but she is amazing to me.

10-28-10 2pm

So even though we asked hundreds of questions and had lots of doctors and nurses telling us what was going to happen, we were unprepared for what seeing Riley after surgery was going to be like. We understood that she was going to be out for the rest of the day and possibly evening. Well what they meant was that she was going to have pain medication because when we went in to see her she was waking up. Not only were her eyes open, but you could tell that she was scared due to her increased heart rate and her eyes going wide. She was also bleeding from the area of the feeding tube - again supposedly normal, but we didn't know that and when you see a new recently cut area of your 3 week old bleeding - your instinct is not a good one.
This is all supposedly good as she is waking up and not going to be needing the vent, but Michele and I were grossly unprepared for this and both had our own minibreakdowns. Our nurses were phenomenal though - they apologized profusely for not preparing us and then have spent the last hour or so answering questions. According to them every baby is different, some sleep all day with the breathing aparatus in others are waking up right away - like Riley. Again, this is a good sign supposedly as it means she will be coming off the ventilator sooner rather then later. This is such a good sign that they will try doing some feedings through her tube tomorrow morning and if things go well - they may transfer us back to Northside tomorrow night now. When she does have these waking up scared fits (about every 5 minutes) she seems to calm to my voice and holding her head, so at least we feel like we are doing something. I am sure that I have said it before in the last 3 weeks, but the first 40 minutes with my newborn after her surgery today was the worst moment of my life. Feeling unprepared, unknowledgeable and unable to do anything about it led to this and makes me realize I am just going to have to ask more questions and do more reading so Michele and I never have to do that again.

I finally had to tell Michele to leave though - she is not in a good way today physically and emotinally. So our very good friend Dawn was wonderful enough to come get her and take her home. I wish I had been able to take her home, but until my child stops looking like a cyborg and waking up every 5 minutes and freaking out.with a look of terror in her eyes I can't leave her here by herself. Michele will be sleeping at home shortly and hopefully that will help her and I can focus on one Jacobs' woman's health instead of two. 

10-28-10 11am DR WULKAN IS THE MAN!!!!!

So as Michele said, the anesthesia took a little longer due to her size and cardiac issues, but she got through it fine. Dr. Wulkan walked out to find us in the waiting area and he looked at us and said - 'She's done - 33 minutes.' This after telling us the surgery takes 1 hour 15 minutes this morning. He under promised and over delivered by leaps and bounds. He said that she did great - no cardiac incidents during surgery and her two procedures (which I will now refer to as a tube and tighten) are done. We will be going up to see her in a couple of minutes. Mom and I are elated as are the grandparents. Michele is having a tough day physically and emotionally so after we see our little one I will probably take her home to rest. We will update later today or maye tomorrow with anything new.

Thank you all again for the wonderful notes/emails/thoughts that we received this morning alone. We will need them again in the future, but for the rest of today I would ask you to focus your good thoughts on the hundreds of other children that I have seen in the past day and a half here. Some who need so much more then our little flower does. Children shouldn't ever be made to go through what these kids here are going through, but this place is an oasis for them, when they can enjoy it and almost everyone here is a person that has a special place in my heart for the job that they do every single day.

Surgery Update

So at 10:00 am we got a phone call her in the CICU Waiting Room from nurse Jackie to let us know that due to the fact that Riley is a cardiac patient and her size & age, getting the IV and central lines put in her arms took longer than they'd anticipated, so surgery only just began at 10:00 am vs the 9:30 am we'd been thinking.  Hopefully we will have more news closer to 11:00 am.

10/28/10 - 9:30 am

Well, it's surgery day.  Josh & I left our house at 5:30 am to head over to Egleston to visit with Riley before her surgery this morning.  Under normal circumstances, the CICU is closed to visitors from 6:30 am to 10:00 am every monrning for shift change and doctor's rounds.  As today was a "special" day, we were allowed to stay at Riley's bedside in case any doctor's wandered by.  In fact, Dr. Wulkan specifically stopped by to say hello and to see if we had any additional questions about Riley's surgery.

Our sweet girl was sleeping so soundly on her tummy, and her night nurse, Rachel, even requisitioned her a CD player so that she had some nice calm classical music to sleep to.  We only got a few moments of eyes barely opened, but our girl needs her sleep, so we weren't going to be the ones to wake her up.  She did left her head several times and even changed the side her head was facing in order to get more comfortable.

Around 8:00 am, one of the surgical nurses came down to fetch Riley.  We were allowed to accompany Riley to the 3rd floor where the operating rooms are located.  I think we were doing okay, until the anesthesiologist came out and that just made it all that more real.  It will take about 1/2 an hour for them to get Riley situated and sedated for the surgery, then the actual surgery will take approximately 1 1/2 hours.  The surgical nurses who came out to greet us seemed to know how we were feeling, as I am sure that they encounter frightened parents every day.  They promised to take care of our girl for us. 

Riley will be getting a breathing tube for the operation and they plan on keeping that in for the day, and maybe the night.  I think it was that bit of information that pushed me over the edge, as I had no clue a machine would be breathing for my tiny baby during this process.  It absolutely breaks my heart that at 3 weeks old, Riley needs to have surgery.  Not that her being any older would make any difference ... it just sucks that she had to go through all of this.  The doctor's have assured me that Riley will be sedated and not aware of the tube and that she will be given pain medications to help her into recovery.

As for me, physically I am not doing so great.  I am in some pain and the Percocet makes me feels sick, so I have been avoiding taking that unless absolutely necessary.  I am still bleeding, with out any end in sight.  This morning was especially rough and the bleeding seems to be increasing instead of decreasing as one would expect it would at 3 weeks postpartum.  Josh is on me about my health like white on rice, so he insisted that I call my OB/GYN and schedule a check up.  So, I will be going in tomorrow, and I fully expect them to tell me that everything is normal, just that I am going through a terrible experience and have not had a chance to recover as I would have if circumstances were different.

10-27-10 8pm

So for anyone that has spent even a small amount of time with my wife and I am sure that my next sentence won't come as any big shock, but for some reason it does to me.

I can not believe how different my wonderful wife and I are. With Riley going in to surgery tomorrow I am absolutely 100% confident that this is going to work and we are in the best of care and that this particular issue will be fixed - I am by no means saying I am happy about it, but completely confident due to lots of questions and research. Michele is heartbroken about the surgery and that our little one has to go through it at all. On the other hand I broke down today in the hospital due to Riley's future. We were eating in the cafeteria around a number of families and some of them had children who had disabilities - both mental and physical. I barely made it through lunch without bawling my eyes out due to the fact that all I could think about was the difficult life that my little one could have ahead of her if she has mental issues or physical malformations. My wife consoled me as I wept and assured me that we were both strong enough to get her thru and to that future.

See I am a die hard belief in science person. I am a scientist at heart and when there is lots of medical evidence, it's something I can learn and touch and almost feel. Therefore that knowledge consoles me and makes me feel almost good that there is something to fix through surgery (I know that sounds awful, but please focus on the word fix and know that I would never want my daughter to have to go through something unnecessary). My wife isn't necessarily scared of that, but she can't feel the scientific reasoning behind like I do. On the other hand - when it comes to mental handicaps and learning disabilities, those are phenomenally 'squishy' things that science barely understands and no amount of surgery or learning can fix. These unknowns and 'squishy' things bring out my fears in my ability to be anyone's father - let alone a little flower like Riley that may have multiples of these issues. I wouldn't say that Michele is comfortable there, but she is confident in that future if it presents itself. She feels that these can be overcome with work.

This is why we are perfect for each other always, but especially now. I am confident when Riley is in the today of science and doctor's; Michele is confident in our abilities to get our daughter through the possible haze of tomorrow. Between the two of us we will hopefully be able to hold up to anything that this awful syndrome can throw at us.

I promise that I won't get to preachy on this thing in the coming years, but I thought the following might be interesting to some. Ryan Dempster, a major league pitcher for the Chicago Cubs had a daughter about a year and a half ago named Riley and she has 22q as well. He and his wife have started a foundation: http://www.dempsterfamilyfoundation.org/
It is a great website with lots of information and stories from a number of families that has brought Michele and I hope and ideas. Anyway, they will be having an event here in Georgia next month - which is wow, next Friday: http://new.evite.com/?utm_source=other_email&utm_medium=email&utm_content=text&utm_campaign=invite#view_invite:eid=016FAAQZXGK5ZYRWMEO7ZMQMD2Z56Q&gid=016FAAQZXGL24EX3GEO7ZMQMM6EM4Q

Michele and I may be going to this, just to meet some other families who have fought against this syndrome and hopefully gain some perspective and courage. Hopefully in the future we may be able to do something like this for the center in Riley Rose's name.

Thank you again for all the notes of encouragement and offers of help - I can't really explain how much the notes help Michele and I. Your love and support has been and will continue to be invaluable to our little flower and us.

10/27/10 - 2:30 pm

Today is Riley's due date. 

We started our morning off at Northside loving on Riley and waiting to hear about her transport to Egleston.  Finally we got the call that they were on their way and would be to us in about 45 minutes.  They arrived looking like the SWAT version of hospital transportation people.  Mark, David, Julie & Jason got Riley untethered from her cords and wires and moved into a warm & cozy isolete for her big move.  Today, after 20 days in Northside, Riley would be going outside for the first time.  I got to ride along in the ambulance while Josh gathered all of the stuff we'd accumulated during our stay in N4 so that he could drive over and meet us at Egleston.

The ride over went nice and smooth ... Riley slept through the whole thing!  We arrived at the hospital and made our way to the Cardiac Intensive Care Unit (CICU) where Riley will be staying during her time here at Egleston.  I left her to the care of her nurses and went down to Admissions where I had to sign some new paperwork. I've lost count of how many forms I have signed in the last few weeks.  We had to sit around and wait while they got Riley settled in.  This place is Huge!  There are so many facilities for the families ... work out room, library, office centers, you name it.  As nice as Egleston is, and I'm sure we'll be happy here when heart surgery time comes around, I think Josh & I are both already missing the comfort of the familiarity of Northside SCN.  After 3 weeks, we know exactly what to do there.  We know the doctors that have been taking care of our girl.  We know the nurses and their routines.  We know where to find everything and had settled in nicely to our semi-private space there.  Here, we are strangers in a strange land.  While a lot of things are the same, the overall feel is completely foreign.

We meet with Amar, who will be on the surgical team with Dr. Wulkan tomorrow.  Amar went through the process of inserting the g-tube, and what it will look on her skin.  He explained the Fundiflication (not sure if I spelled that correctly or not).  Basically what will happen is that they will actually fold over the top part of Riley's stomach and wrap it around the bottom of her esophogus to create a tighter area which will help to reduce the reflux.  This will be done lapriscopically (again, not sure if the spelling is correct), so Riley will only have 3 tiny incisions.  They feel that infants actually heal faster than adults ... I can only hope that is accurate information.  The surgery should take about 1 hour and 15 minutes for both procedures.  We are still not sure what time the surgery will be, but have been assured that we will know by the end of the day.

Right now we are waiting again to be able to see Riley. When ever a surgical patient is being transported, parents must vacate the CICU.  Again that is one the downsides here.  They close the CICU during shift changes, and Zoey won't be able to visit her sister here either