Lots of new things!!

So my last post was about Rylee's doctor appointments and all the new exciting changes that need to happen.  We made some of the changes!  We got her Pedia Sure, except that it's just regular because the store didn't have Pedia Sure with Fiber.  We also got her some weaning sippy cups. She got some puffs to work on her cognitive development. And a new carseat.  It was time.  Since she is so small, we had to get her a rear facing.  I researched extensively on what the best carseat would be.  We tested it out right on the shelf at the store.  And, with a coupon of course, we got it.

 

Graco My Ride 65 car seat.  (You bet we got it in pink and brown!)

Pedia Sure with Fiber (today, she doesn't have extra fiber!)

 

tommee tippee transition cup, she hasn't mastered this cup yet rather it's getting to the best of her!

Gerber Puffs!  These things stick to anything when they get the tiniest bit wet.  Dr. C suggested these because you can get the best photos of you kids trying to eat these.  He's such a funny guy!  Rylee got Apple, Banana and Sweet Potato!

Because birthdays and christmas are so close, as many of you already know, we got a few duplicates of things.  Today, we went to good ol' Walmart and returned them.  Troy's have been replaced with a train set.  We didn't really know he had such a liking for trains until the daycare told us he plays with theirs the entire time he's there.  He's quiet and plays nicely.  And as I speak, Troy and daddy are make choo choos and vrooms from the living room where they got the set out on the floor right away!  The gifts he received were wonderful and though we only needed one of each, you'll be happy to know that he is ecstatic about his new "train choo choo".  He loves it.  And if it weren't for you lovely people, he wouldn't have a train set.  He says "please" which means thank you.

Visits to the doctor!! LONG POST!

The last 2 days have been jam packed with doctor visits.  Yesterday, Rylee and I made the trek to Iowa City to see a lot of people.  Her appointments were scheduled as follows:
9:00 am High Risk Neonatology with NP Diane
9:20 am Pediatric Cardiology
10:10 am Opthamology/Eye Institute

Now I completely understood before going down there that this schedule was very unrealistic.  HR Neo. normally takes an hour and half to 2 hours alone.  We gave it our best shot though.  The synopsis of each appointment is as follows:

9:00 am High Risk Neonatology

At 9:00 we arrived at the Pediatric Specialty clinic.  NP Diane came and got us at 9:15 am. (See how late we're already getting!)  NP Diane did a lot of things with Rylee which included picking up a cheerio, passing a block from one hand to the other, banging to blocks together and responding to her name being whispered behind her.  Those were a few.  We talked largely about Rylee's feet. See why?

Troy's normal feet

Rylee's weird feet

So NP Diane wants Dr. C to get us special shoe inserts to correct this.  The next thing we talked about was her diet.  That is something that will constantly and forever be talked about with us.  Her weight was 14 lbs, 5 oz and she was 25 7/8" long.  Her diet consists of 4 oz of 30 k/cal Neosure every 3 hours at 20 oz per day and cereal at breakfast and dinner.  We had tried baby food before but she didn't seem interested.  We are going to change many things.

1.  Her new orthoped inserts!
2. More time in the high chair with veggie/fruit puffs to work on her fine motor skills. (Making her pick them up with her thumb and pointer finger)
3. No more Glycerin Suppositories.  Her stools are way to hard and digestive system is way too immature.  NP Diane is concerned with the change in her head pressure when she bears down and when she gets "full" the intestines squishing her stomach causing her shunt to be pinched off, CSP (cerebral spinal fluid) to back up, resulting in infection like meningitis.  So she is now on Miralax.  (**FUNNY STORY**  My grandma, bless her heart, also takes miralax daily.  She was hospitalized last month and the nurse gave her a packet of miralax to take since she was taking it daily.  As Grandma poured it into her cup, she looked up at me and said [I quote] "I'll be shitting before I get to the car."  It was hilarious.  That ol' Grandma can always make me laugh!)
4. We are changing her diet!!  No more stinky, expensive Neosure!  Now we get to switch her to Pedia Sure with Fiber!  It comes in Vanilla.  It's sweet and tasty.  And it's 30 k/cal already!  I don't know the cost of it yet.  I haven't got to research it but I am sure it's going to cost about the same as Neosure.  Oh well.  Grow baby Grow!!

That sums up the hour long, rushed appointment with NP Diane!  We see her again in 6 months!


9:20 am Pediatric Cardiology

We were instructed to go straight up to the 3rd floor via elevator F (we were at elevator F, 2nd floor for the Pediatric Specialty clinic), take a left out the elevator and go to Pediatric Radiology for a chest xray.  Found that easily enough.  We did the chest xray.  I got to see it.  I could see the shunt tubing snake its way down her chest and pool in her belly.  Cool!  Then we had to go back down to the Pediatric Specialty clinic where we had to wait in the waiting room for 15 minutes until a room opened up, it was that busy!  Jill, a Pediatric Cardiology resident, came to visit us once we got a room!  She went through Rylee's entire medical history with me.  Then Euli, I don't really know her title, came and stuck all the echo stickers on Rylee's chest, arms and legs and hooked wires up to each sticker.  I have had this done before and so has Rylee.  She must have remember because she laid very still.  They got a good reading.  Resident Jill ordered blood pressures on each of Rylee's arms and legs. Done! Resident Jill and Dr. Reinking came and talked to us.  The hole in her heart has closed!  The back sloshing of blood has probably not.  She has a large heart, large kidneys, small liver.  She looks chubby in the belly because of her big organs.  Right now, we're not going to worry about her heart.  We'll do another echo in 12 months.  They sent of off to our next appointment.

10:10 Opthamology/Eye Institute

We had to go from elevator F, 2nd floor to elevator L, 1st floor.  I put Rylee in the Moby D and we cruised over there, almost ran.  We arrived at 11:37 am.  Only an hour and a half late, no big deal just that the Eye Institute was calling the Pediatric Specialty clinic harassing them to send us over!  We got there.  They dialated her eyes.  I feed her while we waited for the drops to work.  Rylee fell asleep.  (We got up at 5 and this was her first nap of the day, she talked all the way down to Iowa City)  After 30 minutes, they took us back and looked in her eyes.  Done!  Come back in 12 months!  YEEHAW!

After we were completely done, I loaded Rylee in the Moby and we ran to the cafeteria, hoping and praying they would have cheese pizza and pineapple.  No such luck.  I got Pepperoni and sausage pizza and a container of fresh pineapple (score! I should've got 2!) Then we walked to Parking ramp 2, rode up to the top, 4th floor and loaded up in the car and came home!

We picked up Troy, ate Chicken Tacos for dinner and at 9 pm climbed into bed!

At 11:30 pm, Troy coughed, rather he barked.  He had that croopy, barky cough that makes the throat feel really yucky.  I sat up and reached over for him.  He was burning up, 102.3°F.  YIKES!  Kris was finishing up with work and we decided we'd have him stop at WalMart to pick up Tylenol meltaways.  Those worked perfectly once he got home. There was no fighting Troy to take those.  At 3 am, the temp was 99°F and close to gone.  However, Troy kept putting his hand over his ear.  We just had the tubes put in to prevent ear infections and this seemed like a classic Troy case of double ear infection.  We were scheduled to see Dr. C in the morning so I decided I would call in the morning and have him added to the schedule. 

Today, Rylee was scheduled for Synagis injection and 1 year well child.  Normally at 1 year the do a blood draw but not for this girl! I called right at 8 to schedule Troy's appointment for 11 also and got an appointment with the other doctor at the clinic.  I was suppose to meet Kris at the Cuba clinic at 11 but since I had been gone from the work the day before, was not coming back after their appointment due to Troy's fevers, and was going to be at another branch on Friday, I had major work to get done in a small amount of time.  Plus, it was, of course, a major problem day.  So I didn't end up pulling out the parking lot until 11 and getting to the clinic at 11:15.  Poor Troy was in a room with a nurse he didn't know while daddy and Rylee were in another room.  I showed up in time for Dr. C (the other doctor was too busy at the time) to take a peak in his ears and listen to his chest.  Ears were clear and chest was full.  He prescribed antibiotics for 7 days.  Way, on the way to appointment 2. 

Rylee was looked over by Dr. C who was a little disappointed that he didn't get any giggles.  Dr. C agreed to the Miralax and was going to check on the shoes for us.  He also wants to see her at 15 months instead of 18 months.  Rylee got 4 shots with 1 shot being pushed off to 18 months.  She's all vaccinated and in tip top shape! 

This afternoon, I am nursing Troy back to health!  I also filed my taxes!  It didn't take long to do.  So those are done.  Need to do Kris's financial aid and then I'm finished for this year!

I am going to go snuggle with Troybaby and a book.  Good evening all!

I am BACK!

Since I started the 2 week life before Rylee, I haven't been posting.  I wanted to keep it at that.  We've been rather busy around our household recently.

This past Friday, as you all know, was Rylee 1st birthday.  She was gem all day!  She was a very happy girl and we sang her Happy Birthday right away in the morning. It was a fun day!

Saturday, we had a joint birthday party for Rylee's 1st birthday and Troy's 2nd birthday.  It was at Jumpin Janes in Dubuque.  We had lots of adults and 9 kids 9 and under.  It was fun.  I think that most of the kids had fun.  Kris's nephew, Noah, was a little timid at first but warmed up to it later on.  My niece, Isabelle, took a little while to warm up to it as well but by the time her dad came they were running around.  We had a party room with an attendent who more that served us well.  She refilled out pitchers, offered to write down the gifts the kids got, helped clean up.  And she said we were one of the most laid back groups.

I had ordered some shirts for Troy and Rylee to wear to their party.  Well after about a month of waiting, guess what came today? 2 days after the party!  So much for the shirts.  I love them.  They're cute as can be but they're 2 days late getting here which they should've been here at the beginning of last week.  Ugh!  Oh well.  We're going to have the kids 1 year and 2 year pictures taken so they can wear them then!

Sunday, we went to our nephew Adam's baptism in Bloomington and then to Cassville for a luncheon.  As we were getting read to leave, Noah bumped into me and I discovered that he had stolen a piece of cake off the table.  He was shoveling the cake in.  It was funny.  Grandpa got a photo.  I had never actually seen anyone do that before.  Too funny!

Last night, Kris and I sat down and watched the Duggar Special.  Now, you have to know who the Duggars are.  Jim Bob and Michelle Duggar have 18 kids (all names starting with the letter J) and in early December at 43 she had her 19th child 15 weeks early weighing 1#6oz, Josie.  Last night on TLC they had a special about Josie's birth.  The last 10 minutes were rough on me.  They showed Josie being handed off by the doctor to the NICU nurse and I had a flash back of Rylee in the doctor's single palm being handed off to the NICU nurse all purple and blue.  Needless to say, I was crying.  Kris even left the room cause it was just brought back all those vivid memories of Rylee a year ago.

The Duggars 19 kids and counting will be on I think Tuesday at 8 pm on TLC.  Don't quote me on that.  From the previews it looks like they will show more of Josie's NICU life.

The day we met Rylee

Thursday, January 29, 2009

At 12:30 my heartrate was 172 and Rylee's was over 200.  We were both looming with infection.  She needed out.

At 1:30 they realized the contraction were not registering on the screen like they'd like.  So they inserted an internal monitor.  However the first one didn't work.  The student doctor checked me and said I was at 4 or 5.  But since the monitor wasn't working, the actual doctor was going to put it in.  When she checked me, only a couple minutes after the student, she said I was a definite 7. The phone rang, my mom had arrived.  As she was placing the monitor she asked me to roll a little more to my side...BOOM..full 10!  Just in a roll.  BOOM...contraction...need.to.push!  A couple minutes later, as people had came rushing in, Rylee arrived.  The room was full of people.  The student doctor delivered her.  It was his first baby he delivered.  She fit in the palm of his hand.  He handed her right over to the NICU doctors.  3 of them worked on intubated her and fiddling with her.  Kris was taking pictures of her.  I got to see her before she was wheeled down to the NICU with Kris and his mom in toe. 

 At 2:30 am, I was all cleaned up and asked them to bring my mom in.  My mom came in and asked where Kris was.  I said, he's with the baby.  She didn't even know that the entire time that she was in the waiting room, I was delivering Rylee and watched her be wisked off to the NICU.  Kris came back and showed me some pictures.  He also told us that she was 2 pounds, 15 ounces and 15 inches long.  I had to wait until 3 before I could go down.  Kris took his mom and my mom and Rich to the NICU to see her.  My mom called my dad and told she was born.  Mom and Rich headed to a hotel.

I proved to the nurse that I could walk.  She loaded me in the wheel chair and I went to meet Rylee for the first time. 

She was lethargic.  She was tiny.  She was doing as well as could be expected.  She held my finger.  I wanted to hold her.  I wanted to stroke her hair.  But all I could do was let her hold my finger.  The NICU nurse introduced herself and explained what all the machines were and what they did.  After a little bit, I got wheeled back to my room.  Me, Kris and his mom slept.  I was up quite early itching to go see.  (Literally, I was itchy.  I developed a nasty rash that ended up lasting well over 3 weeks that spread to every single inch of my body.  Some say it was PUPPs and some say it was eczema, who knows.)  Throughout the day, I got to go see her.  I got to get up and walk to see her.  Kris and his mom went home so he could get Troy and they would come back the following day.  Today was Day 1 of Rylee's 79 days in the NICU at University of Iowa Children's hospital. Today, we became a family of 4.  Today, Kris's parents got their first granddaughter.   Today, was an amazing, life changing day.

Happy Birthday Rylee!

At this very moment, 1:55 am, 365 days ago, Rylee Marie was born weighing 2 lbs, 15 oz and 15 inches long.  Today, she is 13 lbs and 25 inches long. 

Rylee has spent 23.5% of her 1 year of life in the hospital. And 49.8% or 182 days on oxygen to assist her breathing.

Throughout the past year, Rylee has been tested for Cystic Fibrosis, negative. She has been diagnosed with ROP, Chronic Lung Disease, Hydrocephalus and Chromosome 6 deletion q25.1-25.2. 

Today, Rylee is full of smiles.  Her personality is shining bright.

She loves her Jumperoo.

She loves her brother.

She has just recently taken to a pacifier.

She goes to bed at 7 pm and gets up at 5 am to eat and sometimes falls back to sleep afterwards.

She loves dolls and girly stuff.

Anything she can wrap her fingers around go in her mouth.

She can sometimes roll, sometimes not.  She can not yet sit up unsupported but can do pretty well with minimal support.  She is seen by a speech therapist and occupational therapist once a month and a physical therapist twice a month. 

She has 1 tooth.  She is eating single grain organic cereal.  We have tried to feed her organic sweet peas but she hates them.  Maybe we'll try in a couple weeks again.

Happy Birthday Rylee. 

Love- Mommy and Daddy

The 14 Days before Rylee, Day 14

Wednesday, January 28, 2009

Today was my dad's birthday.  I called him in the morning.  The team of doctors came the previous morning.  I asked about being trasferred.  They were going to check into it.  The same team came in, hadn't gotten a response from Mercy yet.  Baby Rylee must have liked breakfast because ever since, she moved like crazy. It took 45 minutes to get a good enough readout for the stress test because she was moving so much.  The nurse that day was my favorite.  She kept telling Rylee to take a nap for a few minutes.  She was super nice.  At noon, all of the movement stopped.  I told nurse Rebecca when she came in.  She wanted to do another stress test.  Passed with flying colors.  She thought the baby had moved around because she couldn't get a heartbeat in the normal spot.  The night nurse came.  I didn't care for her much.  She also did a stress test.  Passed again!  But the baby was sitting very still.  There was hardly any movement all afternoon.  After dinner, I talked to my sister.  I talked to her and completely forgot about Bingo.  Oh well!  I mentioned I thought I had a contraction.  Nothing out of the normal though.  After talking to my sister for an hour, I got off the phone.  I instantly felt terrible.  I just felt yucky.  My back hurt so I got in the shower.  I literally stood in the shower, doubled over in pain.  I got dried off and dressed and paged the nurse.  I told her I thought was having contractions and they hurt.  She got the doctor.  Sterile exam time.  But this time they couldn't get the speculum open.  She got a wheel chair and got me to labor and delivery.  They wanted to do an ultrasound to see it the baby was still breech.  Now, I was told that the baby would be born by c-section because she was breech and wouldn't be able to turn on her own in the low amount of fluid.  When the doctor brought her up on the screen, it was evident that miss Rylee had indeed flipped to the head down position.  They took me across the hall into a laboring room.  I didn't know if they were going to try and stop this or not.  The nurse took my temperature, 103°F at which the doctor replied, yup your having this baby TONIGHT!  I had developed an infection probably because I stopped the antibiotics a couple days before.  I was also dehydrated so it took 4 times of trying to get an IV in. 

I had called Kris before I paged the nurse just to give him a heads up.  About 45 minutes I called and told him to come.  He met my sister at our house so she could take Troy and he and his mom (after he quickly showered the stink of work off) literally sped down.  They got there around 11.  Just in time for the epidural.  I was freezing because of the infection.  The room's temp was turned up rather high. The 3 of us just chilled for a while.  My mom and Rich were headed down.  My dad stayed home.  We were just waiting.

The 14 days before Rylee, Day 13

Tuesday, January 27, 2009

Again...a normal boring day.  After the fetal stress test, my stomach was itchy.  I took another shower to get off the goop from the test.  Lots of kicking towards dinner.  The woman who cleaned my room came in and told me that I didn't look pregnant.  I certainly felt pregnant.  The woman with the things to do stopped in and invited me to play bingo.  She gave me a packet with all the information in it.  I could play bingo the following night at 7 over the TV.  The first one to call the number with a bingo, won!  I don't remember what you could win but I could do TV bingo.  Sure why not?