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.