Monday, February 22, 2010

The pukes!

We girls have been pukin'!  Rylee much more than myself.  Today, in the almost 7 hours I have been from work, Rylee has projectile vomited 4 times.  She may only eat like an ounce or two but I swear to you there is at least 4 coming back out.  We're out of Pedialyte until Kris gets home at 12 therefore, it's a water only diet from here on out tonight.  This vomiting has to stop!  This "thing" has to rid itself of her body.

This "thing" has cause this mommy much grief over the past 3 days.  Not only have we been up to our elbows in vomit but also nose drainage.  It's disgusting around here.  Rylee had been having a runny nose since Thursday or so.  Saturday it progressively got worse to the point that at bedtime she couldn't breathe well making her a little irritable.  Sunday, she started coughing.  With the coughing came the vomiting.  By Sunday night, she could not breathe, had wheezing, chunky cough and had vomited a few times.  Through the late hours of Sunday into the early morning of Monday, Kris and I were probably up at least 10 times.  Whether that be just checking on her, woke by her coughing or woke by her screaming.  I must clarify something, Rylee is not the screaming baby type, she is extremely easy-going.  Last night that screaming scared the heck out me.  She was also having a hard time breathing.  On the 17th, I had to give back the portable oxygen since the insurance company didn't want to cover it any longer and by all rights, we haven't needed it in a while...until last night.  Man I wish that I had that oxygen last night.  She was extremely irritable.  She spiked a fever to 102° which scared me too.  I was afraid she had H1N1, which we were told in her case would be fatal, or that he shunt was infected or clogged.  At 4:30 this morning I was ready to take her to the hospital or call an ambulance for some oxygen.  You could tell by the retracting at her sternum and just her overall appearance that her oxygen sat was low.  But we made it through the night.

This morning, I got her in with Dr. R, not Dr. C who is always booked solid, right away.  Her O2 sat was 92.  Not great, not terrible.  Dr. R decided to give me the choice...take her home with oral antibiotics or have her admitted to Mercy for IV antibiotics, chest xray, pokes and prods.  After discussing it, Dr. R thought that at this point in Rylee's life, there is no need for her to have more xrays.  He believed the outcome regardless of what that xray would say, would be the same.  Therefore, I decided to save her the sticks and take her home.  If we could make it through last night, we could do it again.  However, should she develop a fever of 101°+, start retracting again, turn blue around the lips, blah blah blah....than it would be time to have someone else take over.  If she spikes a fever, we will take her to the ER.  If she starts having trouble breathing, an ambulance is to be called and they will take her the ER.  Scary stuff right? 

However, right now Miss Rylee is awake, little irritable, playing with her feet and the edge of the laptop on my lap.  I am solo right now, as I am every Monday through Thursday nights but today I had the privilege of trying to calm this girl down to get her to nap all the while Troy is also tired and wants me to rock him too.  It was a hair pulling, teeth grinding, ready for serious alcohol, 77 minutes.  I made it through without pulling my hair out, grinding my teeth or drinking any of the non-existent alcohol in our house.  The quiet time only lasted about 45 minutes and then Rylee woke up.  15 minutes later the possessed doorbell rang 3 times causing our dogs to go nuts causing Troy to wake up, causing both kids to start bawling and NO ONE WAS AT THE DOOR!  Now it's 7:18 pm, I am trying to keep Rylee up until 7:30 than it's Troy's bedtime which means my bedtime.  My house is in shambles but it's just going to have to wait until morning.  I just pray there is now emergency trip to Dubuque tonight whether it's me driving or me bouncing around in the back of an ambulance.

Good night all!

Friday, February 19, 2010

Our journey with a Preemie Princess

Over at Kelly's Korner, she is having a Show us your life - Show us your Ministry.  This blog was started last April to update our family and friends on Rylee and our family. This blog was also used (later realized) to be my therapy and coping that came along with the trial and tribulations of Rylee's prematurity and illness.  So this Show us your Ministry is about Prematurity and chronic illness.

Welcome those from Kelly's Korner!  Our journey began on January 15, 2009 when at 28 5/7 weeks my water broke.  I knew I was pregnant with a baby girl we would name Rylee.  Rylee was born on January 29, 2009 weighing 2 lbs, 15 oz (1353g) and was a tiny 15 inches long.  It was then that I started her CarePages page to keep our family and friends posted on Rylee.  We spent 79 days in the NICU at UIHC in Iowa City.  During that time, she was diagnosed with a chromosome deletion in her chromosome 6. It's a small deletion but so far, we have no idea what it means.  Rylee was immediately intubated after birth switching CPAP within 24 hours after birth. 

She has been diagnosed and overcome some of the following:

Chronic Lung Disease (Bronchopulmonary dysplasia, off continuous oxygen June 29, 2009)
Retinopathy of Prematurity
Chromosomal Abnormality - Karyotype 46XX, CMA deletions of 4.2Mb segment at 6q25.1q25.2
Prominent bilateral renal pelvises with concretions in the right calyceal system
Grade 1 IVH (brain hemmrage)
Heart murmur with physiologic tricuspid regurgitation
Kidney disease
Enlarged heart

In August and mid-September, Rylee was having severe vomiting that progressively got worse.  It was found that her head circumference grew almost an inch in 8 days.  After a CT scan, she was diagnosed with Hydrocephalus. She had a VP shunt inserted to drain the ceribral spinal fluid off her brain to her belly.

This winter we have, luckily, been able to avoid most illnesses.  RSV and H1N1 have not invaded our home.  Today, Rylee is a teeny tiny little 1 year old girl.  She weighs 14 lbs, 5 oz and is 25 7/8 inches long.  Physically and cognitively, she is behind her adjusted age even.  To help get her moving physically, we have physical therapy visiting our home twice a month and occupational therapy once a month.  Rylee has chronically sick lungs, heart and kidneys.

It has been an extremely long year and as hard as it was, my husband and I grew stronger together as a couple, grew as individuals and grew as parents.  As I stated before, this blog was made to primarily update my family and friends on Rylee.  It has ended up being a therapy for me.  I hope that if someone I didn't know, who just had a premature baby and thinks their world is ending, they would read my blog and see that during all those days, there will be good days.  I have Rylee today.  She is a happy little girl but she is a chronically ill little girl too.  I will do everything in my power and will to give her the best life possible for her.  And this my Ministry to help others who are facing the trials of Prematurity and chronic illness.

Friday, February 12, 2010

Valentine's Day

Life around our house has been pretty quiet.  Well, other than Rylee's constant babbling and "dadadadada"s and "bababababa"s and Troy's constant none stop talking.  But this week has been pretty low key.  This weekend maybe not so much.  Saturday, Mommy is getting a long overdue hair color and cut!  AMEN.  My poor hair.  Saturday afternoon, we're going to have the kids photos taken (for their 1 and 2 year old photos, I know a little late) at Portrait Innovations.  We just had them done last November so we're going to take advantage of the $9.95 deal.  It's a great deal and we really only need 1 photo.  Then, Saturday night, we're going to go out to eat for Valentine's Day/my birthday.  Going out to eat is very much a rarity at our house.  We don't go unless we have a gift certificate so this is BIG!  I am so excited I could hardly stand it.  I am not even sure where we are going.  It could be to Arby's for all I care.  This just means that I don't have to cook. Amen to that too!  I will post a photo of before and after of my hair in my next post as well as the kids photos. 

Valentine's Day is a day that I haven't cared much about in the past few years.  To me, Valentine's Day marked a horrible day.  5 years ago, I found out that I was pregnant.  I was 19, sophomore in college, not married to Kristopher, scared like CRAZY!  On February 14, 2005, I lost that baby.  That was the beginning of our long journey to have children.  However, at the time, we were not ready to be parents in any way, shape or form but we would've managed.  As much as I wasn't ready to be a mother, by that time I had enough time to accept the fact and forsee what my life would've been like on October 8, 05.  My family was supportive of Kris and I.  He took a major brunt of hurtful things said and my heart broke for him.  I know those things are still baried deep down and every Valentine's day he thinks of those things.  I know I do.  Every Valentine's Day I mourn over that baby.  Just like every October 28th I mourn for our second angel baby and every January 17th I mourn for our third angel baby.  Valentine's Day 2005, I had gotten Kris a card from baby and me, that card is among the books and blanket, hat and rattle in a cardboard shoebox rounded with duct tape baried deep in our garage.  I will never open that box.  I never want to look at that box again but I just can't get rid of it.  Valentine's Day 2010 will be just like every other Valentine's Day. 

Tuesday, February 9, 2010

Potty potty potty!

Over the weekend, we splurged and got Troy a potty seat.  It was on sale, $3 off, and it was Elmo!  Last night, Troy told us that he had to "pee", grabbed his potty seat and a hold of his boy parts, and we ran to the bathroom.  Sure enough, he tinkled and tinkled on the potty.  We made a huge deal of it.  We clapped and cheered.  We waved bye bye to it as it went down.  He was very excited and proud of himself.  This morning he got up and said "pee" and ran to the bathroom.  But he couldn't quite hold it.  This afternoon, he thought he had to go again but his diaper was wet.  He did sit on the potty seat and tried to potty, but just couldn't.  It seems that he tells us he has to potty as he is going.  We also have to dance to the Potty Dance song when it comes on the TV and have downloaded it for our own use.  Long ago, Kris and I decided that in no way shape or form would we push Troy and Rylee to potty train, we would let them let us know when they were ready.  Don't get me wrong, we encourage the potty at times, but don't push the idea.  Both kids don't like to be wet or dirty so maybe we'll get lucky there.  This may just be a phase that Troy is going through but we're going to take advantage of it.

Saturday, February 6, 2010

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.

Thursday, February 4, 2010

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!

Monday, February 1, 2010

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.