A Year Ago

Can you believe that one year ago my precious Angel was born?  Riley Rose turned one on Friday October 7, 2011.

Josh & I were very lucky to be able to get pregnant right away with both of our girls and both of them were planned.  I knew one thing ... that I did not want Zoey to be an only child.  Finally with her in the GA Pre-K program, we were able to afford to add on to our little family.  My pregnancy with Riley was very different than my pregnancy with Zoey.  While I have have chronic hypertension and developed Gestational Diabetes with both girls, I had a much harder time managing them with Riley.  At our 20-week ultrasound we were told that the baby had dilated kidneys, so I would need to be monitored by a Perionataologist in addition to my regular OB/GYN.  The upside was that I have a lot more photos of Riley in the womb than I do with Zoey.  The downside was I felt like I spent my entire pregnancy in a doctors office and I worried that my new baby would have kidney problems.  Despite all of my ultrasounds, the one thing that was not picked up with the fact that Riley had a heart defect.

On Tuesday 10/5/10, I was having a lot of back pain, so I called me OB in case I was in labor, having been induced with Zoey, I didn't know what it felt like to go into labor naturally.  Well, false alarm, no labor for me, but my blood pressure was high enough that the Natalie, the midwife, decided I needed to be admitted to the hospital and induction started.  I guess natural labor in not in the cards for me.  So off we went to get our ducks in a row ... Anne to watch Zoey over night, bags packed (I wasn't quite ready)  ... and off we went to Northside Hospital.  We were admitted fairly quickly and settled into a nice large birthing room.  I thought that with my 2nd baby things might progress a little quicker.  Nope, not gonna happen.  56 hours later which included 2 attempts (the first was an epic FAIL) on having my water broke by the midwife, an epidural and many shots of insulin, we were ready to push (yea!).  Despite the epidural, I still had a bit of pain.  The upside what that within 10 minutes and 2 1/2 pushes, we were blessed with a 2nd beautiful daughter.  Again, I was a little surprised that she was girl since I had such a different pregnancy than with Zoey, but heck, I thought she was a boy too, so what do I know?

In an odd twist of events, I was so sick about 10 minutes after delivery that I was literally throwing up all over myself.  Good thing I did, since we decided to send Riley to the nursery sooner than we would have.  In the nursery they were able to see her O2 drop, because of that they called in the on-call pediatrician who heard a "clicking" noise in her heart.  That prompted the visit by the cardiologist, who detected the VSD (among her other heart defects).  All of this going on while she was in the NICU - so they were able to see that she had a bit of jaundice, and administered the lights

Being in the NICU, they also saw that when she ate Riley's heart rate would rise and her O2 would drop, which was rather puzzling, so a swallow study was ordered. The results being that Riley was aspirating her food into her lungs and would now require a feeding tube.  The NG-tube lead us in the direction of knowing that my sweet baby would need surgery for a G-tube ... the only problem was that she was too tiny to have it done at Scottish Rite.  Thankfully we have an awesome GI doctor, Dr. Olga Sherrod - not that I liked her much in the hospital, but only due to the fact that she was giving me (more) bad news - Dr. Sherrod called over to Egleston to talk with Dr. Mark Wulkan, a fantastic, cutting edge surgeon.  Luckily for us, Dr. Wulkan could do the G-tube surgery, it was just a matter of finding a bed space for Riley at Egleston that held us up.  So on her due date, 10/27/10, Riley was transported by a phenomenal ambulance team from Northside Hospital to Children's Hospital of Atlanta at Egleston, and on her 3-week birthday, Riley had her 1st surgery.

Nothing in this world prepared me for how she would look post-op, absolutely nothing.  But with the help of of CICU nurse Lisa, we were able to understand all that was happening to her and for her.  By the next day, Riley looked amazingly better.

Finally on 11/2/10, Riley was able to come home to us for the first time

We have survived 5 G-tubes busting, the first few of which required ER visits at Egleston, colds that turned into 10-day Egelston visits for respiratory infections, open heart surgery, and too many doctor's appointments to count.  Today we celebrate Riley's milestones:

• Off of continuous feeds through her G-tube
• Off of night feeds
• Cutting back on medications
• Repaired VSD (woo-hoo!)
• Eating baby foods ... and now some table foods to
• Sitting up
• Rolling over
• Tracking
• Smiling (although she is selective about her smiles)
• Reaching and playing with toys

All things that you generally take for advantage, but here we are today with a fantastic kid thanks to every one's hard work

Wedding Photos ... finally

I know I have been a slacker, but here are a few photos from Melissa & John's wedding:








Zoey & her Aunt Melissa getting (more) beautiful at Salon 7



Granpa with a few of his girls

The Jacobs Family

The New Mr. & Mrs. Giantinoto



Count Down

Only 4 more days and my baby will be 1.  Where has this year gone?  We have had so much going on with our precious baby and with her equally precious big sister:

• Zoey started pre-K
• Slightly premature birth of Riley
• A month in the NICU
• Surgery at 3-weeks old for a G-tube (I hate you G-tube, but love you too)
• Sent home with a hear condition and swallow issues
• Spent several weeks at the Children's Hospital with respiratory infections
• Zoey started playing soccer
• Rose Mary moved in to take care of Riley since day care was not an option for us
• Heart surgery on 2/25/2011 (yea!)
• Riley started speech therapy
• Riley started Physical therapy
• Riley started to "catch up" to her age - sitting up, babbling, etc
• Riley started eating some baby foods by mouth
• Zoey graduated pre-K (what a big girl she is!)
• Summer camp for Zoey
• Riley continues to progress with eating
• Zoey turns 5 years old and we have a fantastic Art Party
• Zoey starts Kindergarten at Ocee Elementary and my heart breaks a little at how big my girl is
• Riley is eating more & more by mouth
• We are told by the GI doctor that the G-tube will eventually come out, it's just a matter of time
• Party planning for Riley's big 1st birthday

10-year Anniversary

In order to celebrate our Tin Anniversary, Josh & I were able to take a long weekend trip to San Francisco.  Thanks in large part to my mother-in-law, Rose Mary and to Anne for watching the girls for us while we lived it up on the west coast.  We flew out on Friday morning, arriving afternoon local time, so we were able to do quite a bit that day.  We checked into our hotel, the Radisson on the Wharf, walked out their back door and were practically on Pier 39.  Of course one of the first things we saw were the seals, lounging in the sun.  Then we walked around all the shops and enjoyed a late sushi & delicious cocktail lunch.  Following that, we hiked.  That is the only word that best describes "walking" in San Francisco.

We took the Filbert Street stairs and started our climb up to Coit Tower, then down the hill and over to Lombard Street - the "crookedest" street, which of course, we climbed up.  We ended this excursion at Ghiradelli for a yummy (although expensive) brownie sundae.  After recouping in the hotel for a bit, we capped off the night at Fog City diner where we learned the difference between New England clam chowder and San Francisco clam chowder.

Saturday we rented bikes and embarked on a 15 mile tour of San Fran.  Unlike my unwise hubby, I opted for the electric bike - considering I have not ridden a bike since before we were married, I thought this was a good choice.  Now listen, you still have to peddle, like a normal bike, but when you come to a tough hill, you pull back on the throttle and it's just like you have someone giving you a push from the back.  Our bike ride took us though San Francisco, down to the water along a path.  We detoured over to the Palace of the Fine Arts, which was beyond gorgeous.  If we'd gotten married in San Francisco, this would have been the place we'd have taken photos for sure.  The best part of the bike tour was riding over the Golden Gate bridge - what a breath taking experience that was!  Finally we were down hill to Saulsilito, where we had a quick lunch, then a ferry ride back to San Fran (can you see I am getting tired of writing San Francisco over and over?).  Our next adventure was a Go-car ride.  This is basically a scooter with a fiberglass body around it and seats 2.  Built in is a GPS (we call her Rita) which guides you on a set path and shares information about where you are.  What a fun way to explore and have some freedom of where you are going.

Sunday was a nice, romantic day which started with a champagne brunch on a ship, which takes you around the bay.  We arrived at our assigned seat to find a card and a box of chocolates waiting for us - such a nice touch.  The food was delicious, and the champagne was flowing.  We had a piano player/singer to serenade us as well.  We got a different view of the Golden Gate bridge than the day before as we went right underneath it.  After our brunch we motored down to the pier for the boat to Alcatraz.  Yes, I know there is something wrong with me, but going to Alcatraz was probably #1 on the sightseeing list for me.  We did an audio-tour and took lots of photos.  Let's just say I am glad that I never had to do any time on the Rock.  Not a fun place to be, but man, did the prisoners has a fantastic view.

We changed hotels on Sunday from the Raddison at the Wharf to the Hilton in the Financial District.  Evidently the Hilton is the largest/busiest hotel in San Fran, so it was a very different atmosphere.  We got to see a different part of the city.  Monday started with a walking tour of Chinatown, which was what I expected, but Josh was sadly disappointed.  From there we did another Go-car tour, only this time going over to the ocean and through Golden Gate National Park.  Granted it would have been a lot cheaper to rent a car, but it wouldn't have been as much of an experience riding around in the Go-car as if we were Speed Racers slightly slower cousin.  For our last night in San Fran, we had dinner and drinks at the Top of the Mark.  We enjoyed having the sun set behind us, looking over the city.

San Francisco was a fantastic place for us to visit together.  I'm sure we could have done a lot more, but we had a great time in the amount of time that we had.  Hopefully I'll get some photos posted next.

School Days

Zoey is doing fantastic in Kindergarten, most days she gets a green on her behavior chart and she is loving her teachers.  I am so glad that my little girl is enjoying school and all that it brings, I just hope that stays true for her through the years to come.

Riley is kicking butt with her therapies.  Although she is still using her feeding tube, we keep trying to get her to take food by the mouth.  Dr. Sherrod had increased her to 185 ml per 1/2 hour feeds, but Riley doesn't seem to be taking so well to that, so we cut her back.  No one wants to see her spit up

Wedding Day

Saturday 8/27/11 came very early for Zoey & I, with us getting up at 4 am so that we could be at Salon 7 for 5 am.  All would have been going smoothly other than a few things - (1) Melissa's slip for her wedding dress was not with the dress at her house.  She realized that at 1am and the bridal shop at Macy's didn't open until 10 am .... oh, yeah, the wedding was to start at 10 am.  (2) we had hurricane Irene breathing down our necks.  Due to Zoey starting Kindergarten and the fact that both girls had doctors appointments, we had to be back in GA by Monday (cue in the stress factor here).

Fortunately all the girls looked beautiful, some yummy breakfast and mimosas seemed to help things along.  We all went back to Melissa's apartment to get ready, except for Rose, who went down to Macy's to raise a little hell and get Melissa's slip.  Eventually she was successful, and we were on our way to the church, only about 40 minutes behind schedule.

The ceremony was beautiful - Melissa was a gorgeous bride, and although sweaty, John looked great too.  The pastor said just the right things, and I think that made things go a little smoother.  Despite having the wrong slip and no blusher veil, it was wonderful.

From there, we piled in the limo and headed off to Majestic Gardens for the reception and pictures.  It was rainy, but we found a break in the rain and were able to take some pictures in the gardens.  The photographer, John Lennon (yep, you heard me right), did a great job and I am looking forward to seeing all of his finished photos.  The cocktail hour was delicious, full of yummy foods and drinks.

Sadly due to the weather, we had to leave the reception early, and get back on the road, home to GA.  We'd heard that the bridges leaving Long Island would be shutting down at some point, and we really needed to get back home.  We headed west with our goal being to get to VA and finding a hotel for the night.  We ran into a family also headed back home at one of the rest stop.  Unfortunately for them, the wedding they were attending didn't get past the ceremony.  The reception facility opted to close due to Hurricane Irene.  We stopped in Winchester, VA and were lucky to find a hotel with a vacant room - they only had a King size bed, so Josh, Zoey & I slept together, with Riley on a make shift bed on the floor.  All the cots, and double beds had been taken by other travelers.

I so hate that Irene had to come in and mess up Melissa & John's big day.  I know what it feels like to have several years (not month's) worth of planning go right down the drain.  I know how bad it sucks to be missing a bridesmaid.  I know that yucky feeling in the pit of your stomach that comes when you go to the next wedding and it appears that everything is perfect.  Perhaps that is the Fesselmeyer sisters curse ... be glad you're not one of us if you are planning a wedding.

Wedding Weekend Catch Up - Part 1

So, to back up a week or so .... the Jacobs' family packed it up and headed to NY for Melissa & John's wedding Wednesday 8/24 after school let out.  We made awesome time, only 15 hours, and Zoey actually slept some this trip.  We arrived around 6 am on Thursday and luckily my mom was off work, so Josh & I were able to take a nap.  Unfortunately for me, I heard the fire house siren go off and thought it was noon, so I got up.  Turns out, it was only like 9:30!  We recovered from out long trip and got ready for the rehearsal at 6:30 pm.

The rehearsal went smoothly, with only minor changes to the line up.  Afterwards we all went to Cafe Gio for a nice rehearsal dinner.

Friday was a nice low-key day, perfectly sunny.  My Aunt Joanne stopped over to visit and was able to meet Riley in person for the 1st time.

We wrapped up the evening with an early BBQ at my Aunt Debbie's & Uncle Joe's house.  Zoey was having a blast bossing around her older cousins and bouncing on the trampoline

2 Good Pieces of News

Last night we got the results of Riley's blood work from her visit with Dr. Kobrynski - good news!  Her immune system is functioning normally and she will be able to get live vaccines for the first time starting at her 12 month check up.  We have also cut back on her calcium from 1 ml to 0.5 ml 3 times a day; we will do a follow up blood test in about 2 weeks to make sure that she is maintaining a proper calcium level naturally (so keep your fingers crossed!)

This morning we had Riley's routine appointment with the GI and we are eliminating her Prevacid ... one more medicine down!  This is good news!  We'll be increasing Riley's fees from 170 ml per bolus feed to 185 ml and Dr. Sherrod will be ordering a slightly longer Mic-KEY since Riley is growing (from a 12 French 1.0 centimeter to a 12 French 1.2 centimeter) - Riley is a whopping 17 lbs 10 oz and 27" long.   That's 12 lbs more than her birth weight and 8".  You grow girl {yep, I went there}

Weekend Update and Kindergarten Send-off

We had a busy weekend with an end of season tennis party Friday night kicking it all off.  Saturday we were invited to help say "good-bye" and "good luck" to Breanna Betts as she prepared to leave across country to start college at USC - yup, that's right the University of Southern California, as in on the other side of the country.  Unlike the Betts, I don't plan on letting Zoey or Riley know that there are colleges west of the Mississippi.

Riley was a little pooped out from the festivities, so she & Duke opted to take a nap

Sunday Zoey, Anne & I finally got a chance to go tubing up in Helen, GA.

There really are some interesting people on the river.  Did you know you can smoke while tubing?  Not  combination I would have suspected.  Zoey had a blast, and I think both Anne & I ended up with a bruising of the buttocks as we hit some shallow areas.  We all agreed that next time we need to get the stick to push off the rocks with!

Afterwards Zoey & Josh prepped lunch for her first day in Kindergarten

Today was the Big Day ... 1st day of Kindergarten.  Josh woke Zoey up a little after 6 and she was racing to go form that point on.  She urged me to get her hair done fast so that we wouldn't miss the bus (even though we had 40 minutes before the bus came).  Breakfast at home was followed by a backpack fashion show.

Followed by some family photos to mark the occasion

Proud Parents

Then it was finally time to catch the bus.  Luckily for us the bus stop is just diagonally across the street at the Robey's house.

Waiting for the bus with Sean & Sam Robey

Zoey's mad dash for the bus

After a super busy day, Nana & Riley went to meet the bus

Waiting for Zoey to get off the bus

Our Kindergartener home from school

Kindergarten Countdown

Can you believe that my baby will be starting Kindergarten in less than a week?  I really don't know how that is possible, she's still a baby.  Okay, that last part is not really true considering that Zoey read me a whole page out of a Curious George book last night before bed.  While we are still having some major melt downs, overall Zoey is a great kid to have.  She is a loving daughter and an amazing big sister to Riley.  While I know next Monday will be a super hard day for me (and probably Josh too), Zoey cannot be more excited to start this next chapter of her life, so I am trying to adopt that attitude as well

New Hi-chair Cover

Can you believe that you cannot buy a replacement hi-chair cover?  How crazy is that? After much searching, I finally decided to just go ahead and make one.  Rose Mary & I found some nice fabric and some foam to cushion Riley's tushy.  Here is how it came out ...

Tea Party

Zoey was invited to a tea party at her friend Harper's house yesterday.  It was a fancy tea, so I persuaded Zoey to let me curl her hair, with the promise of body glitter.  Hey, a mom had to do what a mom has to do, right?  Zoey was quite tired and cranky, so she had a little melt down there, I went over and hung out and then she had a fabulous time with all the girls.  Putting on a fashion show, decorating frames, running around and generally acting like a bunch of crazy little girls.

American Girl

We had our annual lunch at the American Girl Bistro.  As a surprise birthday present, Grandma & Aunt Nellie let Zoey pick out a new doll. My little girl is oh so creative with their names.  Zoey's bitty baby is named Bella after her friend from Brookeside Academy, and her new doll is named Isabelle.  We had a lovely lunch and the girls looked adorable in their matching outfits from Grandma.

Getting ready for our big lunch date

Aunt Nellie & the girls

My girls and their baby dolls

Baby & Riley

Zoey with her 2 babies

Happy Birthday my sweet girl!

Turning 5

Today, my tiny baby girl turned 5 years old.  How on Earth did that happen?  Just 2 minutes ago she was the little bundle of joy.

These past 5 years have been an amazing gift to me - I can never thank Zoey enough for making me a Mom.  While we have had many challenges and growing pains, there have been so many wonderful moments and memorable occasions to outweigh them.  

Zoey & I spent a great deal of time together, having some much needed mommy & me time.  As wonderful of a big sister to Riley that Zoey is, it's easy to forget that Zoey needs to be babied some times too.  I took Zoey out for a burger at Steak N Shake, then we went to the movies to see the new Winnie the Pooh movie (super cute btw).  After the movies we were practically melting in this hot, hot Georgia sun, so we opted to cool off in the warm bath tub that we affectionately call the pool.

We gave Zoey her presents today ... a Hello Kitty guitar that she's been drooling over for some time.  I am not sure where the  idea came from, but that is what she wanted, so that is what she got.  Now we are contemplating guitar lessons.  Anyone know of a good (cheap) instructor who has the patients for a 5-year old?

I had bought a mini cake last night at Publix, but by this evening it was a bit melty.  Luckily it was still yummy

I am looking forward to what this next year will bring our way.  Zoey starts Kindergarten on 8/15 (tear), and that is the beginning of the next chapter of our lives.

Love you Zoey Lynn!

222 Clinic

Today was our first appointment with Dr. Kobrynski at the 22q Clinic at Emory, although Dr. K has seen Riley several times in the hospital.  We got there early, as requested, then waited around for a while.  Overall, it looks like Riley is doing really well.  The shaking that Josh has had some concerns about is a normal baby thing.  Everyone is so pleased with Riley's speech development, the fact that she is making clear "d" and "m" sounds and especially that she is making raspberries (you go girl!).  I still pray that Riley is on the more mile end of the syndrome and from all the specialist that we've seen, it appears that my prayers may be being answered.  Dr. K will be testing Riley's calcium levels and phosphorous levels to see if they are still normal, which she is guessing it will be.  Babies that have sever calcium problems never seem to get above an 8, even with the medication, and at the last testing, Riley was at a 9.  If things look okay on that, then Dr. K will start weaning Riley from her 3 x a day dose to 2x, then 1x, then possibly down to none.  Of course all of this will need to be retested during the course of the weaning to make sure that there are no problems.  We need to look for consistent shaking .... likened to a person on too much caffeine, and constant irritability, which would be abnormal for out brave little girl.  She is so beyond amazing and I was really pleased with her appointment.

We'll go back at 18 months for a follow up and at that appointment we will be given more information on studies that they would like her to participate in (and Josh & I on one test too).  If we can help any kind of study, or other family then we are more than happy to assist.

Zoey's Birthday Party

For the first time ever we had Zoey's birthday party outside the house.  This was a Huge step for me, but I have to admit that it was way easier.  The the point where I was calling the place to see if there was something that I needed to be doing.  All I had to do, we bring cupcakes, paper products and the goodie bags.  We celebrated at Out of the Box art studio, where the kids got the make creations out of clay then paint it.  I will go back at it's been fired in the kiln to collect the masterpieces.  I cannot believe how well behaved the kids were and how engrossed in what the lady was telling them.  Zoey seemed to have a great time and in the end, that's all that matters.

A special keepsake plate for Zoey to take home

Out art filled goodie bags ... it's great when you have a built in theme!

Riley & Grandma enjoying the festivies

Aunt Nellie & Riley

What an artiste we have on our hands

The proud parents

Catching Up

Riley had her routine appointment with the Cardiologist, and she is dong awesome!  Her resting heart rate was 130, which is fantabulous considering that it was in the 180's for a while there.  This means that her Beta Blocker is doing it's job.

We've been having some problems with Riley retching again during feedings, which is most likely due to the fact that she is teething and creating a lot more saliva that she has to digest.   We checked with the GI's office (I know Dr. Sherrod's nurse, Shauna, by the sound of her voice) and they agreed that we are doing what we need to be doing - which is cutting back on her feeds and extending them to 1 hour again vs. the 1/2 that she's been doing.  Over the last few weeks, we've cut back form 170 ml per 1/2 feeding to 140 ml over an hour.  Slowly, we're building up the volume and are back to 170 (1st time today).  We'll keep that for another day or so, then start cutting back the duration of the feedings.  Riley is doing awesome with the mouth feeds again too, which just warms the heart.

Zoey is getting geared up for her 5th birthday party which we are doing at a local art studio next Saturday.  This is the first time that we are doing a party outside of the house and I'm a little freaked out by how little I have to do.  I am so used to making sure that my house is super clean, that we have all the food & drinks, the house is decorated - you name it!  I actually called the venue the other day to ask them if I should be doing something and they assured me that, nope, I am all set.  Weird.

I am on this weird organizing/decorating kick lately.  Thanks to a few blogs that I like to read on a regular basis.  Right now I am focusing on turning my dining room into a grown up,pretty space, and it is coming along nicely.  I've made new curtains from some beautiful fabric that I found along with some inexpensive sheers from Wal-Mart.  I've also been doing a photo wall with black & white family pictures (it's amazing how similar the girls look as babies).  My next adventure will be the laundry room - which is currently in the delightful shades of olive green, brick red and goldenrod.  I plan on painting the trim & cubbies a nice glossy white, the walls a soft grey and then accent with turquoise.  I can't wait to get started!  Okay, I hate painting, but I love the end result.

Great News!

So, last week we received notification that we would have to appear in court on 8/15/10 at 9:30 am in order to try to get Riley's Medicare denial reversed.  We weren't sure what that would entail, so I was planning on sitting down with all of our paperwork (and there is a lot!) to get it organized as I was planning on bringing every scrap of paper that we possessed.  Well, Saturday afternoon the doorbell rings and it's the postman with another certified letter, and a large envelope from a law firm.  Personally, I assumed that we were just getting some more information on the hearing.  Well low and behold, the letter was telling us that Riley's denial was reversed and that she is now approved for the Katie Beckett Medicare!!!!! 

I guess all we have to do now, is figure out what to do now?  I know I can't rely on them sending us information in the mail, so I plan on calling Riley's social worker to see if she can point us in the right direction.  We were told when we stated this process that the coverage would go back 3 months from when we filed, which means it covers from the day that Riley was born until now.  I'm hopeful that this will cover the co-pays that we have to make for her specialists and for medications.  Specialists now cost us $50 per visit and thankfully those are no longer every-other-week appointments, and meds are costing us close to $200 per month.

Despite not knowing how to proceed from here, I am beyond hopeful & excited now.

Some Road Trip Pics

Here are just a few pictures from the actual road trip part of our adventure thanks to Anne's camera phone.  I'll post some pictures from the actual trip when it's not as hot as hades in the office and I can manage to sit in there for more than 2 minutes at a time.

Finally, she sleeps (Anne & I did the happy dance up front)

Objects in the window may appear larger than normal

Stretching out our legs

Riley was thrilled to no longer be strapped into her seat

Riding the ferry to Fire Island ... no sunshine for us that day

Relaxed much?  Riley's propping her foot watching Barbie with her big sis

Riley's 1st french fry

Now she's going for her 1st Coke (crazy kid)