3 years ago...

my life changed forever!  Troy Thomas Klauer entered this world.  Happy 3rd Birthday Troy.  I love you more than you'll ever know.

Oh, what to do...

We took Rylee to her Growth Hormone testing. Her blood pressure dropped to 50s over 20s. That’s the lowest it got, which was low enough! It took about 4 hours. She was pretty much zonked through the entire thing. On Tuesday, after much badgering, I got the test results. She passed. This was a test that we desperately wanted her to fail. I thought, prayed rather, that this Growth Hormone deficiency was going to be it. It was going to be the diagnosis that we had been waiting for. But she passed meaning that’s not it. To say that I was bummed to highest level on Tuesday is an understatement. So it’s back to the drawing board. We had to take Wes to see Dr. Ashley on Wednesday and she pulled Dr. Connolly in to look into his ears. We discussed the results a little while he was in with us. He thinks that she may quite possibly have some form of dwarfism. It could possibly be the Chromosome deletion. It could be a lot of things. So we discuss this more at length on Thursday when we take Wes back again for his 4 month well child appointment. Diane Eastman, Rylee’s nurse practitioner from UIHC, called me yesterday. She desperately wants Rylee in to have her heart and kidneys looked at. I was trying to steer away from Iowa City because of the drive but I guess it’s not much longer than going to Madison from our house. Rylee’s innocent heart murmur may not be so innocent after all. Her enlarged kidneys could be the problem. I hope going down there we can figure out what is causing this “failure to thrive”. She is officially considered a “failure to thrive” child because her growth is less than 2 lbs and 2 inches of growth in 1 year. In the last 12 months, she has only gained 10 oz and grew 1 5/8 inches. I want to discuss the possibility of the Mayo Clinic with Dr. Connolly. I think it is time to quit messing around and just head up there. If he doesn’t think so, I do. And I am mom so I win! I am at my wits end really.  I just don't know what to do anymore.

Runny noses is the race around our house. We can’t get Wes and Rylee’s to quit! Poor Wes had an ear infection in November and again in the beginning of this month. This poor child has been following in his big brother’s footsteps, through and through. He has also developed a wheezy cough that Amoxicillin didn’t kick, neither did Omnicef so he has Prednisone to his regimen. He is taking Omnicef, Prednisone and Albuterol by nebulizer everyday. Hopefully, when we see Dr. Connolly next week, this is all cleared up.

Last Sunday night, Kristopher took Troy to see a Canadian Pacific train come stop in Dubuque. It was all lit up in lights and they had performers and music. He had a blast. The only downsides were that it was late, 9:30 pm, and bitterly cold out. They stayed for about a half hour and then came home. He was so excited to tell me about it. He even talked about it with his babysitter for a couple of days. He knew all the colors of the lights. He’s growing up before our eyes! He says some of the funniest things and we have the most interesting conversations. He’s hugely into trains and dinosaurs.

This weekend is a big one for us. Tomorrow my baby brother graduates from college and is having a little open house at my dad’s afterwards. I am excited to cheer him on. I have to pick his girlfriend up at 1 and we will take our seats (yes, there is assigned seating!). Do you all remember the scrawny little guy? Now he is a bulky, muscular, tall guy. He’s no longer my “little” brother…he’s my little but BIG brother! Congrats Scotty!

Next Monday, we are off to the GI doctor and Thursday to see Dr. Connolly. Eventually we will go a week with out a doctor visit…I hope!

Happy Thanksgiving

Well, it official.  My sisters, sister-in-law and I are NUTS.  Down right crazy.  We braved the crowds and went black friday shopping at WalMart's 12:01 am sale. I got a few things but my favorite is the bicycle for Troy for his birthday.  I am so excited about that!  I do have to say that people are down right crazy.  Oh man.  Erin decided that she would like something to eat and a quick McDonald's drive thru turned into a rediculous 30 minute wait.  Then about half way home, we almost hit a herd of cows, literally by the hair on my chinny chin chin.  I got to bed at 3:30 am and was up at 7, needless to say I am tired.

Thanksgiving is usually a low key holiday for us.  This year, I made the whole dinner and all then later we went over to my dad's and ate some more!  I made a traditional Thanksgiving dinner.  The sage and garlic turkey,sausage stuffing, mashed potatoes, corn, green bean casserole and dinner rolls.  We had pumpkin pie loaded with Cool Whip for dessert.  It was fantastic.  Rylee loved it.  Troy broke out in hives from who knows what (a little benadryl and he was fixed).   We went around the table and said what we were thankful for.  Troy said "peanut butter sandwich", haha, it's been his favorite lately.  This is a photo of my scrumptious turkey.

It's been a while since I posted about what has been happening in our family.  Rylee's big testing is coming up, Tues Nov 30th.  They are testing her for Growth Hormone Deficiency.  We will then discuss why this is, what the treatment is, who we see next...those kinds of questions.  Then Dec 1st, I have been subpoenaed to court.  First time I have ever been to court and I HAVE to be there.  In August 2008, I became a Notary Public.  I am bonded and all.  In October 2009, I had a family come in and I notarized a will.  Now, after a death, there is a controversy over that will and I am the main witness.  That darn Notary.  Since then I have been much more leery of what I am notarizing.  I am nervous as all get out.  I have to make it through Rylee's testing first and pray to the high heavens that nothing goes wrong at that appointment.  That attorney does know that she has this big testing and there is always a possibility of something going wrong, especially with Rylee and her "damaged" organs. 

Lately, I have been crafty.  A while ago, when I started making Halloween costumes, I got fabric to make Christmas stockings for our family.  I finally got them made.  They are so darn cute. I spent $16.95 to make those.  I already had the interfacing so I just had to buy the fabric.  I still have to put our names on them but I think I am just going to get those iron on sheets and print them on. So for about $3.50 each, we each has personalized, custom stockings, can't beat that!

 Troy and Kristopher's stockings

 Rylee and my stockings

 Weston's stocking

Last weekend, I decided to make an apron because I don't have one.  It turned out so cute!  I had so much material left over, that I decided to attempt to make Rylee a dress.  It's a pillowcase dress and it's so cute.  I just love it.  She looks adorable in it though I didn't get any pictures of her wearing it.  It cost me just under $10 for the 2 yards of material and I still have quite a bit left over.  So for $10, I got an apron and an infant sized dress.

2 weeks ago, I spent my sunday at the sewing maching and made 1 panel for the kids bedroom window.  I have 3 more to make for their room and 4 for ours.  I couldn't stomach spending the $10 per yard for the fabric I wanted for the kids room.  I wanted something colorful yet still go with the grayish, silvery paint we got to paint their room.  I found those most adorable fabric for our room and there again I couldn't spend that much money just for curtains.  The designer fabric was 30% off so I got them for about $7 per yard.  So instead of getting the 10 yards that I needed (2.5 yards per window), I got 4 yards of the designer ($7/yard x 4 yards = $28) and 6 yards of muslin ($1.39/yard x6 yards = $8.34 for a total of $36.34 for 8 panels to cover 4 windows...not bad!).  I had a picture in my head of how to would turn out.  It looked awesome.  Now that I have my pattern down from making the first one, I need to get crackin' on the other 7, ugh.  And we need to get those rooms painted.

I also made curtains for my kitchen sink window and a valence for the dining room window to match.  Cute right?  I made both of those for about $7. 

I also made a WI Badger wreath.  The tulle cost me $6, the styrofoam wreath $3 and the "W" for $1 for a total of $10.  I decided that I needed to make a wreath hanger to go with so for $7 I made one.

I also made this twined "K".  The twine was $2 and the letter K was $1 for a total of $3. 

I made these jars.  I spent about $2 per jar, used the same roll of twine from the letter K above, $1 each for the finials, $1 each for the spinals and $.50 for each of round bases for a total of $13.  (I still have to attach the bottoms to the jars but one of the jars are bubbled so I am trying to figure out how I am going to do that.)  I got the rocks from the dollar store so $2 there.

I had so much fun but I think I am taking a break from crafting for a bit.  I need to get our bedrooms painted and curtains made and hung.  I am excited to see the finished project.  It's on my too do BEFORE christmas.  I got the ideas of the twined K, Apothecary jars and wreath hanger from Shanty2Chic.  Right now they have not 1 but 2 giveaways that I am excited about. The first giveaway you'll see is for Gorilla glue.  That stuff is amazing.  They have some great epoxy glue.  The other giveaway, I will extremely heartbroken if I don't win, is for a Silhouette Machine.  Oh my goodness, I want one of those really really really bad.  It would make my crafting so much easier.  You probably ask, why the Silhouette versus a Cricut? Because, you get patterns and such online for $.99 I believe for the Silhouette versus the Cricut cartridges for $60+. 

Here are a few more overdue photos.  My little Weston is not so little anymore.    He is battling a cold right now and just got over a nasty ear infection. 

Our Journey with a Preemie Princess

Last year, I wrote this post for Premature Awareness Month Bloggers Unite event on November 17, 2009.  In the last year, we've been busy.  We successfully made it through RSV, cold and flu season without any major illnesses.  In February 2010, I found out that I was pregnant...again, due September 8, 2010.  This pregnancy was a rough one.  I had major morning sickness, achiness, Braxton Hicks since week 13...I was just miserable the entire time!  In April 2010, Rylee started seeing a GI doctor and nutritionist monthly.  We have tried many different diets and medications.  So far, since February Rylee has gained 1 lb.  In the end of July, Rylee started vomiting again.  Her GI doctor and nutritionist decided that it would be best to have her head measured.  I rushed her to the local clinic at closing time, had her head measured and sent off to the Children's Hospital in Madison.  By 9 am the following morning, they had reviewed it and called.  They wanted her there right away to have a brain scan done.  The scan showed that her shunt had indeed quit working.  She was scheduled for the surgery the following morning, July 30th.  It went well and we were able to come home the 31st.  On August 2nd, I went to work like any other Monday morning.  I had contractions all day but chalked it up to those Braxton Hicks.  I had a regular 34 week OB appointment at 3:30 pm.  I got in the car and started to the clinic, which takes 35 minutes to get there, when those contractions started to hurt a little.  I told the nurse when I got there and got this look like "you are not in labor!"   I was doing a doctor rotation so a new doctor whom I had never seen before came in with her head in my file.  She looked at me and said "oh my gosh, ok...how long have you been shaking?"  She called an ambulance to take me to the hospital since I was no longer in any shape to drive and I was 3 cm and 90%.  Those EMTs, both men, wheeled me out of the clinic on a stretcher through the OB waiting room.  I probably scared the daylights out of those waiting expectant moms.  I was 5 cm and completely effaced when I got to the hospital.  Weston Robert was born 5 weeks, 3 days early.  He started grunting with each breath and had some trouble catching on to eating.  He spent 19 days in the NICU.  5 days after bringing Weston home, I noticed that an incision from Rylee's July surgery was broke open and there was a black something inside of it.  The next day, I took her to see Dr. Alison who was extremely upset by this, got us an appointment at the children's hospital for the following morning and instructed us to go to the UW ER if if broke open again, bled or could see the black "thing".  As of Monday, we found out that Rylee's shunt was exposed and she needed an entirely new shunt.  Dr. Bragg (the new Neurosurgeon) tapped her shunt for infection and instructed us to be back in the morning for surgery.  I was extremely nervous that morning.  They took her back and it seemed like forever before we got an update.  Dr. Bragg came in and said that she had just closed Rylee up and getting ready to clean her off, when the phone rang.  It was the lab, saying that Rylee's culture from the shunt tapping the afternoon before had grown out for positive strep coag.  So Dr. Bragg, went back into surgery to remove the shunt, place a PICC line, and place an EVD.  Rylee was in the Pediatric ICU for 8 days before undergoing another surgery to put a new shunt in.   Today, Rylee and Weston are healthy and happy.  Weston has completely caught up with his age.  Rylee is lagging about 12 months behind.  They wear the same sized clothes and diapers.  It's like having twins.  The last 22 months have been hard.  As a mother, my heart has broke many times watching my child go through test after test.  Whenever I have a "down" day, I think about her toothy smile, infectious laugh and the mere fact, that truly against all odds, she is here with us.  We don't know what her life expectancy is but she will have the best life we can give her.

Too many babies are born early.  The cause of Rylee's prematurity is unknown.  There are problems with her heart, lungs, kidneys, intestines, brain, feet, hands...could these have been prevented if she was a full term baby?  We'll never know.  Give a baby a chance, donate to the March of Dimes.  Do it for Rylee!

I made a quick little video of Rylee's last 22 months.  Enjoy!

Make an on-line slide show at www.OneTrueMedia.com

Lots of STUFF

Happy Tuesday everyone.  It's not so happy for me.  Sunday, I woke with a horrible sore throat and terrible head ache.  I spent much of Sunday with a fever in bed, sleeping.  I woke on Monday, without a fever or headache but still an awfully sore throat.  As yesterday progressed, I became feverish, achy body, light headed...so I broke down and called the doctor.  I have strep throat.  Never have I had such pain in my life.  Dr. Alison prescribed me some amoxicillan and wrote me a note to stay out of work today.  I took my amoxicillian and went to bed.  I woke 12 hours later covered in hives.  Apparently I am allergic to amoxicillian.  They're going to get me some different antibiotics and steroids for the hives.  Glad I wasn't at work today.  Right now, I don't have a fever just quite itchy and sore. 

Next order of business is the month of November.  November is Prematurity Awareness month.  Do you remember my post about my little miracle last year? Click here to read it again.  November 17th is Prematurity awareness day.  I will blog that day with Bloggers Unite about not only Rylee but her little brother Weston too.  1 in 8 babies are born premature, support those babies on November 17th by blogging or donating to the March of Dimes or by simply wearing purple.

Moving on to the holidays.  We recently celebrated Halloween.  I am not really sure this constitutes as a holiday but boy did Troy have fun. We got all the kids dressed up in their costumes.  We went to the assisted living facility that my grandma is at to visit with her.  Then we ventured over to my dad's, my aunt and uncle's, and my dad's wife's parents (did you get that?  They also are my bosses!).  We got home in time for the trick or treating.  Rylee, Weston and I stayed home to hand candy out while Kris and Troy went Trick or Treating.  I watched from the door as he went to the first house, the lady on the corner.  Aren't these the cutest pirates you've ever seen?  I am so proud of their costumes.  They weren't hard to make but I made them all by myself.  They turned out better than I thought. Rylee had a pirate tutu. So cute!

Thanksgiving is right around the corner.  This is the 3rd or 4th year that Kris and I have just done Thanksgiving as our little family.  I love this.  It's a day of deliciousness, cozy house, jammies, great food, family, football and BLACK FRIDAY ADS!  I don't exactly have my menu planned out yet but we'll be having the usual turkey, stuffing, mashed potatoes, corn, green bean casserole, pumpkin pie.  I love cooking for my family and can't wait until their older.  My sons will tell their wives, make that like my mom!  HAHA!  I have never been one to get up early and do the black friday events.  The crowds bug me.  But I think I am going to attend this year with my sister, sister-in-law...whoever is going before I work that day.  I don't know what I will get if anything but we'll see.  I am pretty I went like 5 years ago and didn't get anything, just helped out my sisters.

Speaking of Christmas shopping, had I be on the mend, Kristopher and I are going to go do some Christmas shopping this weekend.  I am excited to spend some time with him.  He's been wonderful to me, especially the last couple of days.  My in-laws are wonderfully taking ALL the kids, so we can have some time away.  Plus, Santa needs to get the stuff to our house without children seeing it.  Here's a sneak peek into what Santa and Mrs. Klaus (we spell things with Ks around here, not Cs!) plan to pick up on their day out....

 Smart Trike for Weston or Rylee, not quite sure which one yet

 

Train set for Troy - Santa and Mrs. Klaus plan to set this up so it's play ready Christmas morning

We may also be getting our hands on a play kitchen so a shopping cart and play food and dishes may be in order too.  

Before Christmas we are in major need to purge purge purge some toys.  They are overtaking our home and we can't possible add anymore unless we get rid of some!

It's not going to be a very expensive Christmas but it's going to be a great one.  We have much to be thankful of like always.  Don't forget about Prematurity Awareness day on November 17th, wear something purple.

Freakin' Awesome!

Like I said in my last post, we have started cloth diapering Weston and Rylee.  My sister in law told me about the system that they use.  I looked into it and did a TON of research and we decided to use the same system called Best Bottom Diapers.  It's a one size diaper that has inserts that snap inside.  Super easy!  And perfect for our busy busy family.  We put them in disposable for the couple hours they are at daycare everyday but when they are home, they're clothed.  We got them from a store in Middleton called Nicki's Diapers.  I mean this store is literally stocked FULL of cloth diapers, as well as other baby things.  It's a neat store tucked in a neat little strip mall area.  We decided primarily to start cloth diapering because of how sensitive their skin is.  Then after researching and seeing the cost, how can we afford not too?  I spent a little over $200 to get us started.  That's 2 to 3 months worth of disposable diapers.  So in 3 months, they have completely paid for themselves.  We have been doing this for just about a month and love it.  Yes it is a little more work but not a ton.  We have an extra load of laundry each day but with a family of 5, we have laundry every day anyway.  This system works wonders for our busy household.  Not to mention, reduces our carbon footprint!We got the following diaper covers for them (we got 2 of the white):

 Vanilla

 Blue Moon

 Chunky Monkey

 Cookies N Cream

 Key Lime Pie

 Mint Chocolate Chip

Strawberry Shortcake

Now over at Nicki's Diapers Blog, they are giving away a brand NEW pattern and the winner gets to choose the color they get...AND I WANT ONE! Isn't this so cute?

Onto other news, we may have a new diagnosis for Rylee!  We visited the GI doc on Tuesday.  Dr. N wanted to consult with her "superior" ("superior" asshole, he was!)  to see what he thought about have her "scoped" and biopsies taken of her bottom stomach and small intestine to test the enzymes and to look her anatomy.  This would require her to be put under.  The "superior" jerkoff decided that before they do that they should test her thyroid and growth hormone as well as for Celiac Disease and malnourishment.  Dr. N said she would call me if any of the test results we abnormal otherwise she would send a letter and see us in a month.  She called me on Thursday at work.  The Celiac Disease results were not in yet (at Rylee's age, it's not very accurate but they wanted to see what it said anyway, maybe retest at age 3).  The rest of the results were in, thyroid is fine, not malnourished BUT her growth hormone was "extremely low, practically non existent."  The next step is to see an endocrinologist, Dr N says RIGHT AWAY!  Turns out that we will see Dr. Connor on November 10th.  It was then or wait until February, nope not doing that!  Here's a link I found quick for you to reference and read a little about what it is, causes and treatment: Hypopituitarism.  We'll know more November 10th, which is a good day...my niece Lexie turns 7 that day!  Pray that this could be the answer to our prayers.  Dr. N said, "Mary, I think we found it, maybe we make this sick little girl a little more healthy, put some meat on those tiny bones."  I think we are also going to have a meeting with Dr. C and get some kind of weight check schedule set up and overall future plans set up.  We can't keep just skipping along, something has to be done.  That is what I feel in my heart.  I didn't listen to my heart the last time and she ended up with 2 unnecessary surgeries.

Tomorrow is Halloween.  We have a ship full of Pirates!  They're going to be so stinkin' cute.  I made their costumes 100% on my own.  Very proud of it.  I also made their treat bags.  Those a cute too.  I'll post pics soon!

We're still alive!

Holy Cow, I haven't posted in a while! We've been fairly well at our house. Weston just got over a cough but other than that we've been fairly healthy. The diaper rash was out of control at our house so we decided to switch to cloth diapers. We cloth diaper Rylee and Weston at home and use disposable when we are out and about or they're going to daycare. We're attempting some potty training again with Troy. He's doing alright but the problem comes when he is playing he doesn't want to stop to go potty so its a fight to get him in. Last night he took off his pullup and ran into bathroom saying "daddy I got a go potty" and he sure did! He will only use the big potty, STANDING UP! So you can imagine what the potty looks like after a day of Troy...YUCK! We took Rylee to visit the neurosurgeon a couple weeks ago. Her weight was 16 lbs, 4 oz! AMAZING. That's up 10 ounces. Since she was in the hospital, she hasn't really wanted Pediasure a lot bunch so we decided to experiment. Rylee hasn't gained any weight since February. At the end of August she was drinking about 24-32 ounces of Pediasure a day by bottle and that was pretty much all she was getting. She wasn't interested in pureed foods. We started to give her more table foods, by the speech therapists request. Mid September we started reducing the Pediasure and supplementing with Vit D milk and giving some table foods like cut cooked veggies and soft meats. Today, Rylee is not longer taking a bottle, drinking solely Vit D and eating table foods at every meal. This girl can eat. She eats more than Troy. She got mad at Kristopher tonight because she ate all of her biscuit and he was going to eat his, so he had to give her another one! She has been using a spoon. It's great! We also took Rylee to the Orthoped doc a couple of weeks ago. This was just to check her Surefits to make sure there were no tight spots or rubbing. There were a couple of spots that had to be popped out a little and he put some Teflon tape in the inside to help make moving a little easier. He said that she absolutely HAD to have shoes. They could not be Robeez, which are moccasin type shoes, because they do not have stability to them. He said tennis shoes. He also said that it didn't matter if we got her Stride Rites or Walmart brand shoes just whatever we could find. HA, that turned out to be harder than we thought. Yesterday, Kristopher took all 3 kids to Walker's in Lancaster where his mom works to look there. They came home with the cutest little white and pink pair of Nike's. She hates them but she'll get used to them. They're hers for a while since she doesn't out grown much very fast. She'll probably wear them out before she outgrows them! I asked the Orthoped doc if these braces will fix the problem or will this be a problem throughout her childhood and teenage years? The pronation of both feet is so severe that it's going to be a lifetime problem. There is nothing they can do to fix it. The braces are there to help but not cure. Rylee's incisions are nice and healed. There is one of her tummy that I don't really like the look of but the Neurosurgeon assured me that it looked fine. Her hair is starting to grow back from the surgeries and the rest of her hair is grossly long and constantly in her eyes. She needs to have her hair to be trimmed for sure! The orange dye is starting to come out but there is definitely still a tint to her blonde hair, she looks more like a strawberry blonde. My hair tends to pick up the red when I have it dyed so it maybe more in the genes. She's pulling herself up to everything! She's doing wonderfully! Weston is growing growing growing. He is 10 lbs, 4 oz. He still has all of his hair. His head control is awesome. And he smiles. True smiles. He gets all fussy and fidgety with Kristopher sometimes and all Kris does is hand him to me and Weston is a whole new kid! I just love him so much and I tell him that all the time. Bedtime tonight is coming early for Troy. He hasn't been a very good boy today. His ears aren't working today and he thinks its fine to pick on his sister and back talk to mom and dad so right now we're all listening to him scream to the high heavens. He's sure persistent, it's been a good 1o minutes. It's football season and we love our Badgers and Packers. Do you know how to Bucky?

2 of the fastest yet longest months ever

I took Weston to his 2 month check up today. That's right, this past Saturday marked Weston's 2 month "birthday". I can't believe it. I can't believe that he is 2 months old yet it seems like he was born ages ago! His stats at 2 months:

Weight: 10 lbs, 4 oz (5-10th%)
Height: 22.5 inches (25th%)
Head Circum: 14.75 inches (5th%)

I also am proud to announce: I GOT THE FIRST SMILE AND COO! Me...I never get the firsts, that's always Kristopher or others but this time I GOT THE FIRST SMILE. It was this morning and he was just staring at me as I looked down at him, a smile spread and a little coo escaped. I was thrilled! It made my entire week.

My grandma is still in the hospital. She's getting better. I need express that "getting better" needs to be used loosely. She's better today, who knows what tomorrow will be like. She's tired and ready to be home. Unfortunately for her, I don't think home will happen for quite a while, if ever.

A girl I went to high school with had a baby a couple of days ago. She's was only 24ish weeks along. Baby Cricket weighed less than a pound and passed away today. My heart goes out to her as she deals with this difficult time. Please pray for her. Her father just died a few months ago, now her daughter. And to make matters worse, she's doing this alone. The baby's father is not in the picture that I know of. I pray she doesn't reach that dark dark place that is easy to get into when this happens. It makes me think of Baby Samantha. Do you remember me talking about Samantha? I still pray for Samantha, but more so for her mom and dad. I know it's been hard for them and my heart breaks when I think about what her mom must be going through. So many people can be unkind and just don't understand, it's ridiculous.

Other news, we went to the apple orchard last weekend. We got 40 lbs of apples. I made 6 apple pies and 6 apple crisps out of about 20 lbs. We're not applesauce people. The kids like it but could probably live without it (well their bottoms can). So I made up a creamy caramel dip to sliced apples. Troy loves it and it's easy to make.

My boy is fussing. I think it's going to be an extremely long night. Have a good night all. Please pray for my Grandma, Sarah and Cricket, Samantha and Jamie, and for sleep for me, Kris and Weston!

Heartbreak and triumph!

I had to look up to see when the last time I wrote was. My last post was about finding a balance between all my children. I haven't perfected it by any means but it's gotten better. Weston is sleeping better at night, well most nights anyway. Rylee is healing well and walking while holding onto things. Troy is being 2, throwing a tantrum one minute and helpful the next. He really is a good kid but 2 is a hard age.


I went back to work last week. It was nice to be back but I dearly missed my kids. I would say that Rylee had the hardest time. The first few nights she clung to me and cried in the morning when I left. All in all, we're doing well as a family.


In the last week I got an eye opener. My grandma is in the hospital. She's sick, the sickest I have ever seen her. I told Dr. C, who is also her doctor, that he couldn't let her die, not right now. He just looked at me and said sooner or later it will happen. I know that time will come and I can't even stomach the thought. I haven't gotten to visit with her much lately not only because I don't have a ton of time (which is extremely awful to say because I should've made time) but because she's getting harder and harder to visit with which breaks my heart. I long for the Grandma I had when I was little, the Grandma who played cards with me at the kitchen table in their old farmhouse, the Grandma who hugged me tight after I miscarried my first baby, the Grandma who was always baking. I miss her. She's feisty and stubborn inside, but it's not in her eyes anymore. I will always remember those special times with her. My kids will always know what a great woman she is. I didn't get to visit her today. I hope, pray rather, that she is doing better. I am not ready to let her go. Not right now. She may not be the same Grandma she was 15 years ago, but she's still Grandma. She's a great person, through and through. She still worries about her family, prays for her family and is proud of her family. I look up to her. I hope she kicks this bug's ass all the way to the moon and back.


I love this song!

Hmmm...How?

I find myself becoming overwhelmed when I have one child eating, one getting into something, causing mischief and the other crying to be held.  I don't know how as 1 person I am suppose to feed, correct and calm 3 kids.  It's something that I hope to learn to balance overtime but for right now, I take the most urgent.  I am also finding that I feel guilty when I can't spend that time with each child like I used to.  I used to dread bedtime but cherished the moments that Troy and I shared whether it be the stories we told each other or the cuddling time right before he fell asleep.  I loved the moments that I got with Rylee when we were playing or bathing or just sitting cuddled together.  Now I can't balance that time.  I find myself feeling guilty if I am holding Weston and Rylee is crying.  Or cuddling Rylee and Troy is off in a corner playing by himself.  I hate to say but I think Troy has gotten the shaft.  I have noticed that Kris and I are both doing it.  The other 2 kids require more attention therefore Troy is getting less.  For example, tonight we were going to have leftovers for supper but Troy wanted a peanut butter sandwich (at this point, if he asks for something like a PB sandwich, we give it to him because it might be the only thing he'll eat all day, picky picky eater) so I made him one.  That child sat at the dinner table by himself, eating his PB sandwich while I wrangled with Rylee and tried to feed Weston at the same time.  It wasn't until he asked for more PB sandwich, that I realized I had left him to eat by himself.  Our rule at our dinner table is that no one gets up until everyone is done eating just so that no one has to eat alone.  And I made him eat alone.  My heart throbs to go back and change that moment.  I find that a lot lately with all the kids.  I haven't quite fell into a knack for this mom of 3 role yet.  I thought that bringing Rylee home and transitioning to 2 kids was harder than this time but I don't think so.  I think it was hard when Rylee came home because of the monitors and oxygen and her requiring so much time.  This time, I can't hold all 3 kids on my lap and snuggle with them all at the same time like I could when it was just Troy and Rylee.  I never want to wish my children older, but I am hoping that once Weston can hold his own a little more, than we'll be able to manage a little better.  We are also in dire need of a schedule.  For whatever reason, we can not get a routine set at all!  I am just plain frustrated tonight.  It's 9:15 pm and Troy and Rylee are both still up playing.  I can't for the life of me get them to lay down eventually they should tucker themselves out, I hope.  Once they do, Little Man will wake and be awake all night.  The joys of motherhood.  Maybe in 10 years, we'll get some rest but not right now. 

Tomorrow, we are busy running around.  We have Weston's weight check at 9:45 am in Cuba City and Rylee's post-op appointment in Madison with Neurosurgery at 12:20 pm.  This means that I have enough time to run Weston to get his weight checked, run home grab the other 2 kids and some sandwiches and chips and head off to Madison.  It should be fun, me and 3 kids, stitches removal.  Oh lord, help me.  I am scared.  I pray Troy behaves, Rylee doesn't vomit and Weston doesn't scream his head off.  Say a prayer for me for tomorrow.  It shall be interesting.

Good night all.

Do you remember?

**Note:  I know this is late!  I've been trying to write this since yesterday, Sept. 11.  Sorry life is a tad busy!**

Do you remember where you were when you heard about the attacks on our great nation?  I was in English Lit class.  There was a knock on the door and our teacher, Mr. Devlin, stepped out to see what was up.  He walked back in with a look on his face like he'd been socked in the gut.  He turned on the television and let us watch as the second tower fell.  I watched all day from my rural Wisconsin high school (and when I say rural, I mean rural!  The baseball field butted up next to a corn field and there were like 4 or 5 little tiny towns combined into 1 little school district.  It's rural in those parts!  But I loved it.) with shock and horror.  One minute I was talking about my new boyfriend, gossiping with my friends, adjusting to life as a junior!, to terrorist attacks, death and wondering what all of this meant.  Here we are 9 years later.  Too many lives have been lost and Ground Zero is still a 7 story deep hole in the ground.

I don't understand why this world is so full of hate.  I don't understand why so many countries "hate" the United States.  I personally love it here.   I see so many people who have the same scoul day after day.  Literally, I can think of a few people who come into the bank regularly with nothing but a scoul.  There is a woman who comes in everyday, people have tried to "kill her with kindness", and she's still an old stick in the mud.  I don't understand how life could be so bad that everyday you have to be rude and unkind to others.  Don't these people know you should never be unkind to your banker, duh?!  Anyway, we're no closer to peace than 9 years ago, or maybe we are but it sure doesn't feel like it.  I am praying hard for those family of lost loved ones and those in the armed forces risking their lives for me and my family.  God Bless all of them (or maybe you). 

Want a little update on us...
well not much is new.  I have been busy getting the last few things done on our checklist before I have to go back to work.  Technically, I was suppose to go back tomorrow morning but I am staying home for another week.  Right now, no one in our family is ready for me to go back to work.  No one, except part of me.  I am excited to return to work.  I have a purpose at work, it's fulftilling work.  I like to think that I am irreplaceable (but that's not true!).  Kris hasn't been alone with all 3 kids yet, and I don't want to throw him to the wolves when he does have to be.  After being away from home for nearly 6 weeks, my house needs me to be home.  There are common weekly/daily chores that simply didn't get done and now we're paying for that.  Weston is on no schedule at all.  He eats all the time and sleeps when he wants (which is sleeping through the day and awake at night, and we haven't been home or had enough time to help change this).  Rylee has not 7 but 8 healing incision on her body (6 on her head, which is crazy, and 2 on her abdomin).  She needs to heal a lot more before she can go to daycare.  Troy is the one that needs me home the most.  He's had a rough go of it the last couple of weeks.  I am not sure how to help him or break him of this behavior.  I know he is just acting out but that is no way to try to get our attention.  I am having a hard time with him.  I also wanted to have him potty trained before I went back to work from my maternity leave but that's not happening unless the potty training fairy comes and sprinkles some potty dust over him.  And I am not ready yet.  I haven't bonded with Weston near enough, don't trust anyone to care for Rylee but me, haven't gotten to just sit,haven't watch my son's imagination run wild and spent much time time with my husband. 

I am finally getting around to filing claims with Aflac.  Pray for a big return!  It should be a nice amount, whcih we are happy about!  Have a good night all. 

Life is great, again!

We finally got discharged on Wednesday after waiting all day long.  We officially packed in the car at 8:45 pm on Wednesday.  It was a long day of waiting and waiting!  Thursday morning we heard the never ending "NO WYLEE", it was like music to my ears.  Weston and I packed in the van yesterday late morning and went to get weighed, to the bank (twice) and to Dubuque to the second hand kids store.  I bought a bunch of shirts, sweatpants, 0-3 mo outfits for the boys and only spent $45.  They're pretty stocked for winter.  Weston is still wearing newborn clothes but rapidly moving towards 0-3 month.  He was 7 lb, 15 oz.  The nurse was in a hurry, Weston was screaming and squirming and it was one of those weighted scales so I am not sure how exact that weight is.  Today, Rylee and I packed up and went to the grocery store and made a surprise visit to Aunt Carmen at work.  She was shy at First Capital Group but warmed up when we were at the grocery store.  We made a stop at Menards to pick up Daddy's birthday present.  I know his birthday was over a week ago but we still got him something.  We don't have ladder.  Our gutters are in desperate need to be cleaned out and we can't hang up christmas lights outside without a ladder.  So guess what daddy got?  A ladder!  He was actually excited.  I was impressed that I could manuaver around the store with that thing.  He wanted to clean the gutters out right away just to use his new ladder.  Who gets excited over a ladder?  We do at our house!  We piled our cart full of groceries.  Kris and I went through the fridge while I was making out my list this morning and threw out a bunch of stuff.  It's crazy how much stuff gets shoved to the back.  I need to clean that beast out once a week.  It's stocked now.  I actually made a list of the meals that we're going to have and got groceries accordingly.  It was all just stuff that we're going to use, nothing else.   I didn't stray from my list a bit!  All 3 of my children are napping right now.  I am suppose to head back to work on Monday.  My 6 weeks are over but I think that with all the stuff that has transpired over the last 6 weeks, I need 1 more week.  My house, kids and dogs need me for 1 more week.  So I think that is what I am going to do.  It's a good plan!  The neighbor decided to mow her grass, there went my 3 sleeping children!  Until next time all!

The last 43 days!

The last 43 days has been crazy! Here's a quick recap (more for my note taking than anything)

Day 1, 7/28/10 Became an aunt again to Sawyer James in the wee hours of the morning.  Mid afternoon got a call from the GI doctor with suspicions that Rylee's shunt isn't working.  4:55 pm, ran my rear end off to get Rylee into the clinic to get her head measured.
Day 2, 7/29/10 UW Pediatric Neurosurgery called and wanted Rylee there ASAP for a quick brain scan to check her shunt.  2:00 pm brain scan, 2:30 pm looked at the scan with Dr. A and found that her shunt was indeed not working, 4:00 pm finally heading back to SW WI, 11:30 pm, got all the running around done and home only to find out we have to be at the hospital by 6 am the next morning...ouch!
Day 3, 7/30/10 Shunt revision surgery to replace the valve at 7:45 am.  Problems with anesthesia and waking from surgery got to see her at noon wake up with a smile on her face!
Day 4, 7/31/10 Rylee slept the entire night, was happy as a clam, and by 11:30 am we were loaded in the car and headed back to SW WI to get Troy and go home.
Day 5, 8/1/10 Rylee was doing better than expected so as a last minute decision decided to visit our new nephew Sawyer.  We packed up Troy, Rylee and ourselves for the 2 and half hour drive to Tomah.  At 4:30 pm, an almost accident which included a big slam of the brakes, brought on some contractions.  By 6 pm, Mommy wasn't feeling very well.  By 10 pm, Mom felt alright and slept fairly well through the night.  Rylee vomited at our visit and at home in the evening with a slight fever, decided to take a visit to the doctor the next morning.
Day 6, 8/2/10 7:30 am, after a quick shower to help relax from all the contractions, Mommy went to work.  At 9:20 am, Visited Dr. Rose, 10:00 am went to hospital for blood draw, mommy wasn't feels so well, 1:00 pm Mommy decided to time the contractions, 2:45 Mommy got in the car to go to 34 week OB appointment, 3:20 pm arrived at the clinic with painful contractions, 4:00 pm doctor finally came in to see Mommy, 4:20 pm being loaded on a stretcher and into an ambulance, 4:30 pm arrived at hospital, 4:35 pm seen Dr. Berger, 5:00 pm got epidural 5:30 pm Dr. B broke water, 7:00 pm started pitocin, 9:45 pm broke down the room for delivery, 9:52 pm started pushing, 9:57 pm Weston Robert Klauer came into this world and was sent to the NICU
Day 7 8/3/10 Spent at the hospital NICU and recovering.  Weston doing well except for grunting while breathing.
Day 8 8/4/10 Mommy released from the hospital.
Day 9 thru Day 24 8/5/10 to 8/20/10 Divided time between home and the NICU with Weston.  8/15/10 (Day 19) Become an aunt AGAIN to Lily Evelyn.  8/19/10 (Day 23) Took Rylee to her 18 month well child appointment.  She was 28.5 inches long and 15 lbs, 8 oz.
Day 25 8/21/10 Brought Weston home after 19 days!
Day 26 thru Day 29 8/22/10 to 8/25/10 Hung out around home, enjoying visitors! 
Day 30 8/26/10 Noticed Rylee's incision was broke open and could see something black.  Called the Doctor and made an appointment for the following day
Day 31 8/27/10 2:30 pm met Dr Alison who all but freaked out about the incision.  She called UW peds neurosurgery about this and made us an appt for Monday.  She removed Rylee's stitches that didn't dissolve like they were suppose to and instructed us to go to the UW ER if it opened again before our appointment and ordered some antibiotics.
Day 32 8/28/10 Rylee broke her incision open at 2 pm which started bleeding.  At 5 pm did it again but this time was accompanied by crying and a temp.  7 pm arrived at UW ER, 10 pm new antibiotics and homebound
Day 33 8/29/10 Spent the day at home with some visitors and got ready for our 3 appointments on Monday
Day 34 8/30/10 8:55 am met with GI doctor, 9:20 met Dr Bragg, Rylee's new neurosurgeon, who said the black thing we seen was a stitch holding the shunt together, pretty much exposed as well as the shunt.  Tapped the shunt and took some blood to test for infection at which she thought was probably neg.  Scheduled shunt revision surgery for 7:45 the following morning.
Day 35 8/31/10 8:05 am took Rylee back for surgery, 10:00 am Dr Bragg came in say that just as she was finishing up the revision surgery, the lab called saying the cultures were positive so taken the entire shunt out.  11 am, surgery was done and they just needed to place a picc line. 12:45 pm Got taken back to recovery to see her
Day 36 9/1/10 Happy Birthday Daddy!  First night in the PICU was uneventful. 
Day 37 thru 41 9/2/10 to 9/6/10 Kris and I split out time between home and the PICU. 
Day 42 9/7/10 Surgery was at 11:30 am to place the shunt back in.  Dr Bragg switched the side of the shunt to her left.  She had to tunnel a new catheter from her brain to her belly and had a hard time routing it down around her neck area because she's so thin.  Rylee has orange hair with none on top.
Day 43 9/8/10 Today we are hoping to go home.  Rylee has to have a quick brain scan, which isn't schedule so we're at their will for times, and then hopefully can go home. 

Thank you all that called, text us and sent us prayers yesterday.  It meant a lot and we appreciate more than you know.  It's funny how something so tramatic happens like this, you really find out who cares and who doesn't.  Some come to visit, while others can't even pick up the a couple seconds to call.  True colors were shown yesterday and it was my feelings that were hurt.  Not much I can do about it now but move on!  Keep your fingers crossed that we can come home today.  Everyone needs it, especially our dogs and house!

Visitors

Oh my goodness, you guys are amazing.  I did a little begging for visitors and bam you came running!  The last few days have gone amazingly well for Rylee.  Other than having to keep her from standing in her crib, she's been a good girl.  My sister in law Katrina, aunt Lisa and sister, Carmen, came Friday night and played, put her bed and watched her sleep so that Weston, Troy and I could go to my dad's rehearsal supper.  Primarily we went home because Weston was extremely fussy during the night, which woke Rylee each time and left me pacing the room the entire night.  Needless to say, I was exhausted.  I was almost to the point of no return on my lack of sleep.  I was whiny and grumpy and my poor husband was well rested, which made me bitter.  So we deviced a plan that if family was willing to help take care of Rylee in our absence that we would take them up on the offer.  I decided that it was important to go to my dad's wedding rehearsal (smart choice) since I had family coming to visit.  Rylee was left alone all night but the nurses took great care of her and she slept through the night.

Saturday, Kristopher and I decided that it would work out best if he took Weston to the hospital and I took Troy to the wedding (since we were both in it).  Again, smart decision!  My sister, Erin, and her family and my sister-in-law Katrina and her son, Adam, each came to visit on Saturday.  She lit up and had a great time with them. Kristopher and Weston left after Rylee had went to sleep for the night and came home to go to the reception.  It worked out well.

Yesterday morning we left rather early, later than I would've liked, to head to Madison to be with Rylee for the day.  My friends Dana and Aaron came to visit around 11, my brother Craig, his wife and their daughter, Lily, came at 1, my sister Erin and her family followed; my Aunt Debbie and her husband came too, then my in-laws also and my Uncle Tim, Aunt Jean and cousin Anne.  We had constant visitors from 1 until 6 but Rylee loved every single second of it.  Needless to say, she crashed at the early hour of 7 pm.  It was a great day for her.  She absolutely loves visitors.  It's a change of pace for her. Last night, Troy, Weston and I went home.  We got some relatively good sleep.  That was surprising since Weston slept all day.  He was awake until midnight but at least it wasn't all night.

This morning, we got up and made a quick stop at WalMart.  Troy Thomas has grown and we found out how much when this chilly weather came.  We don't have jeans or many long sleeve tops that fit him.  So we made a quick stop at WalMart to pick up a few essentials like a few pairs of pants, tops, undies and socks.  We didn't have an actual potty chair.  He's preferred to use a potty seat on the big potty.  I was reading online that naked time or undies time was good and to have a potty chair in the room with him.  So I set the potty chairs out on the floor at WalMart and let him pick out his favorite one.  He choice a Cars potty chair that has a shifter that makes noise and all.  Then I let him pick out a pack of undies, which he choice Sesame Street.  Then we headed up to Madison.  Kristopher's brother and his family were going to the Madison Children's Museum so Kris and Troy headed over to play with them (or from what Kris said, lack there of).  While they were gone, Kris's parents came to visit as well as my sister and niece. My dad and his new wife came later as well as my Aunt Lisa and Uncle Jeff.  Rylee liked my Uncle Jeff a lot.  They played and played.  Tonight after Rylee fell asleep, Kris, the boys and I went to grab a bite to eat.  Kristopher dropped me off at the hospital and headed for home.  Upon arriving to Rylee's room, her night nurse told me that surgery is scheduled for 11:30 tomorrow.  However, the neurosurgery resident said 7:30 earlier today when I signed the forms.  I am not sure when the surgery is.  Oh well.  I am flying solo on this one I am afraid, either when they take her away or when they come get me for recovery (and I'll have Weston).  Right now, I am super tired.  I am going to hit the hay for a couple of hours and wake Rylee to eat before midnight.  Please pray that all goes well tomorrow for everyone.  Please pray that Kristopher gets some sleep, he's flying solo with Weston (and troy) tonight. 

Rylee update

I think this is post #456 titled "Rylee update".  I couldn't think of anything better.  I have had quite a lack of sleep lately so give me a break.  You'll probably read run on sentences, misspellings and punctuation problems but I don't care! 

Rylee went into surgery at 8:05 am on Tuesday, 8/31.  As far as the doctor knew, the CF culture from the shunt tap on Monday was negative.  Dr Bragg was just finishing up the shunt repositioning surgery when the lab called.  The culture grew out, her shunt was positive for infection.  I am still unsure exactly the kind of infection, some say staph infection, others say they're not entirely sure yet.  Anyway, Dr. Bragg came in to tell us the lab had just called and that she was going to go back in since Rylee was still under to remove the shunt entirely.  There wasn't a dry eye in that room when she delivered the news.  I can honestly say that for the third time in Rylee's young life I was scared that she would die.  Maybe that sounds trival but there was infection so close to her brain and spinal fluid.  I was scared for her and still am.  At 11 am, Dr. Bragg stopped back in the room to tell us that she was finished but that they'd like to have a PICC line placed since she's having so many surgeries.  It would make blood draws easier and then they don't have to stick her to do another IV.  Finally at 12:30, after 4 and half hours, I got to go back to the recovery and see her.  She was awake already this time.  Dr. Bragg put in an EVD, external ventricular drain, to drain the spinal fluid from her brain so her head had a white band around it to secure that.  By 3 pm, she was in a lot of pain.  A little morphine helped her tremendously and she hasn't required any pain medicine since.  Tuesday night, Kristopher stayed with Rylee and I took the boys home.

Wednesday was Kristopher's birthday so I baked a cake at midnight Tuesday night and brought it up to celebrate.  Kris took Troy to the new Children's Museum to play and hang out together while Rylee, Weston and I stayed back to hold down the fort.  She was sitting up, playing with toys and books and watching tv.  Kristopher again stayed the night while the boys and I went home. 

Thursday, Weston had a doctor appointment with Dr. Connolly.  According the measurements, he has grew an inch and a half and gained 1 lb, 2 oz since birth.  He told me that Dr. Allison met him at the door Monday morning to tell him about Rylee.  She worried about her all weekend.  I filled him in on what has been going on.  He always asks how Kris and I are doing in which I can usually honestly say "fine".  This time I said "We're doing the best we can.  We're trying to do what's best for each child."  He then asked how Troy was handling it.  I just lost it then.  Earlier that morning, Troy kept constantly asking where Rylee was in which I replied "at the doctor with boo boos".  That's how he explained it to us one time so to keep it simple, that's what we tell because we know he semi-understands that way.  We had decided that during Weston's doctor appointment and the limbo time before Kris would take him that it would be best for him to go to Tara, the babysitter's, to play.  I put him in the van, told him to climb up in his "cool cool carseat" while I got Weston and when I came back to load Weston, Troy was sitting on the floor next to Rylee's carseat playing with it.  When I asked him what he was doing, he looked at me with the saddest face and said "I sad.  I want WYLEE" and started crying big tears.  I hugged, explained that she didn't feel good and had to stay for a little while longer but would be home soon.  He misses her plain and simple.  He comes to visit but she's pretty much confined to her bed and has to stay in one position so he can't really play with her or hug her or love her up like he's used to.   I told Dr. Connolly about what happened that morning, he said he's worried about Troy.  I think we're going to see if a child life specialist can come and talk with him about this stuff.  He understands that she has "boo boo's" but doesn't understand why she can't come home.  I don't know how to help, I think that he would benefit from seeing someone.  I also met Dr. Connolly's wife, I guess we're family friends now or something.  He popped his head in the room as I was going to load Weston in his carseat to see if his wife could see him.  She was smitten over him! After we left, we headed up to Madison.  I met Kristopher on the road between Mineral Point and Belmont, we waved at each other and that was all I got to see of him for the day.  I don't think you can even count that as seeing one another.  Last night was a bunch of playing with toys, watching tv and just laying around.  My aunt Lisa came to visit.  I had a fussy, squirmy boy who thought he had to be held all the time.  So her visit was extremely helpful, she was my saving grace! 

Today, we're just doing the same old same old.  She just got a bath and is a little fussy because they're messing with her.  Overall, she's happy and extremely friendly with everyone.  She loves visitors.  Anyone who comes in has to come over to play with her because she's so darn bored.  So if you happen to be wandering the halls of the UW Children's hospital, PLEASE come visit her.

Tomorrow is my dad's wedding.  Rylee has a beautiful dress that her grandma Klauer made for her but it will just hang in her closet.  She won't be there.  Kristopher is going to come up and stay the night with her while the boys and I do our thing at the wedding.

The tentative plan is for Rylee to have her EVD removed and a new shunt placed on Tuesday, spend another night, go home on Wednesday.  At least it's a holiday weekend so Kris and I can share the responsibilities better and Troy doesn't have to be shipped off somewhere.  So for the next 5 days, we're just hanging out.  I again beg that if you're in the area, please stop by and see her, she'd love it!

UGH!

That's been our day.  Saturday night we took Rylee to UW ER to have her shunt looked at because it was broke open, bleeding and the black stitches were visible.  They changed her antibiotic and sent us home.  Today, we seen GI, worthless trip!, and then Neurosurgery.  Dr. Bragg is Rylee's new neurosurgeon because Dr. Albright left for Korea or something on August 15th for the next 3 or something years.  Dr. Albright has done both surgeries.  Today, we came in thinking there was an infection, which there is inflammation.  Dr. Bragg was concerned.  She wanted the shunt tapped and blood work drawn to test for infection.  The spinal fluid was clear and as of right now, I have not received a call to tell me the shunt is infected which is awesome.  Rylee will go in for surgery tomorrow.  Our time is 7:45 am again.  That worked so well last time, I am so happy that we got that time frame again. Unfortunately, we have to be there at 6:15 am which means a leave time of 4:30 am.  I don't even know why we should go to bed, especially Kristopher who had to work tonight.  Dr. Bragg is going to remove the shunt valve that was just replaced July 30th and the tubing that drains the fluid into her stomach and put new parts in a new place.  She's going to reroute of sorts.  The shunt will now run more along her ear than straight back.  This moves the tubing's path as well.  From my understanding, Rylee's body doesn't dissolve dissolving stitches.  It was that along with the scratching/breaking open of the incision and the thinness of her skin that the black silk stitch, that holds the valve and tubing together, is exposed.  The worry is that if left as is, infection would fester and spread to the shunt and would essentially kill her.  Dr. Bragg was fairly certain before tapping the shunt and all that it was not infected yet.  Thank goodness for that.  This may have been avoided if we would've had the follow up appointment that we should've had but somewhere along the line wires were crossed and I was told we didn't need to have.  However, you never know.  It could've still happened.  All I know is, it needs to be fixed.  I was apologized to at least 10 times today.  It wasn't me that needs the apologies, it's Rylee.  I have so much to do tonight.  It's 10:45 pm now, all the kids are asleep, I have washed/dried and folded 3 loads of laundry, washed a butt load of dishes and washed Troy's hair (which is a huge accomplishment in itself considering he's scared to death of water and I did it by myself because he rubbed Desitin in it, I don't know where he finds that crap but this is the second time.) and bathed Rylee with the special cleaner.  Nothing a little Carrie Underwood and yodeling singing can't help!  Troy is going to go to Kris's brother's house tomorrow to play while Rylee's in surgery and once she's out and in her hospital room, Kris will go get him. Weston is coming with us.  I am not ready to let the leash loose yet.  I am not with Troy either, but he really can't come, he wouldn't be any fun and they wouldn't like that he was there.  He'll have much more fun playing with Isaac, Noah and Adam.  I still have to pack bags for everyone.  I am not sure who is staying with Rylee at the hospital and who is bringing Troy and Weston home for the night.  Either way, neither one of us will get any sleep, it will be either Weston waking me or the nurses.  Please pray for Rylee's surgery to go well tomorrow and for serenity to wash over me, I am a ball of nerves already.

 2 weeks old

 19 days old, on the way home

 Proud Big Big Brother

 First Ice Cream Sandwich, she liked it!

 

 4 weeks old

 He makes Rylee look big

 She likes him

 Not impressed

Goodnight!

Life as we know it

Life as we know it around here involves lots of doctor visits, so much so that our 2 1/2 year old thinks that everytime we get in the car we are going to the doctor's office.  Over the last couple of days, I have noticed Rylee's shunt incision has been getting a little red and bumped up.  Last night I discovered that she once again scratched it open but this time there was a gaping hole and something black inside.  I called the Medical Associates clinic to see if I can have her looked at.  Of course, this was at 20 to 5 pm and couldn't get in until today at 2:35pm. I was told by the nurse to call UW and see what they have to say.  I called UW who took my message and number and was told I would be called "tomorrow right away".  Well, it's now 9:48 pm of "tomorrow" and I still haven't gotten that call.  We seen Dr. Alison this afternoon.  She looked at it and was going to call UW herself and find out what kind of stitches were used, whether they dissolve or need to be removed.  Upon coming back in, she said she read the nurse the rights by saying that not rechecking her stitches and incisions was unacceptable.  That nurse didn't know what kind of stitches were used but would find out and call her back.  Dr. Alison came back in, confirmed that the black I seen the night before was stitches used under the skin and were indeed infected.  She also wanted to remove the clear above skin stitches.  As myself and nurse Paula were holding Rylee down while Dr. Alison pulled out the stitches, UW Madison nurse called back and said that dissolving stitches were used.  For whatever reason, Rylee's body doesn't know how to dissolve those stitches.  Dr. Alison prescribed Rylee some antibiotics to start immediately and made us an appointment at UW for Monday.  We were already scheduled at 8:55 am with GI and 11 am with Middleton Rehab.  Now we can add 9:20 am for Neurosurgery.  If we see the black stitches anytime this weekend, we have to go to UW ER.  The hope is we caught this early enough that the infection doesn't spread to her shunt.  If it does, that would be fatal.  Rylee also has a popped blood vessel in her eye which started Wednesday and has grown with each passing day.  Dr Alison didn't seem concerned but I am.  I am so worried that the infection will spread that she hasn't left my side all night.  She's sleeping with me tonight and probably sat and sun too.  She's been soo whiny the last couple of days, I am worried. 

It's been a day, well afternoon/evening rather, from hell.  I had my first outings with 3 kids alone.  Not much fun!  I also packed them into the van in a hurry after finding out that I screwed up my calendar and didn't let my sister's dogs out.  Those poor dogs were in their kennel for over 24 hours.  Talk about feeling like a monster.  The worst part is they both held it, no accidents from either of them.  They had to have been feeling pretty miserable.  Thankfully my sister called her friend to come help me.  These are 2 strong labs and between the two of us we probably could've won funniest home videos or something the way those dogs pulled us around the yard!  They chowed down their food and drank a bunch of water.  I left a light on for them when we left and let them run around the basement.  Kristopher is going to go over and let them potty and put them to bed for the night after he gets off work.  I get a "F" for dog sitting. 

I did however get Weston in to see my grandma.  She was tickled to meet him.  We weren't there long but enough to say hello, get enough milk in Weston to get home and for Troy and Rylee to drag out all of the toys.  Tonight, I am praying for a night of more sleep than last night.  Weston thought he needed to eat every 15-30 minutes for 3 hours.  Not cool!!!  So far, it's been much of the same tonight.  He just twitched in his sleep.  I think I am going to ever-so-gently move him into to his bed and snuggle with Rylee and head to dreamy dreamy land at least for as long as I can!

Weston Day 20 update

I can't even describe how good feels to have Weston home.  It's been interesting.  Last night, Kristopher got up with him quite a bit while he let me sleep.  I think it was such a huge stress having Weston in the hospital that having him home now, I was dead tired.  Thankfully, my husband let me rest (and most of the time, I didn't even hear him) and it paid off well. Today, I felt much better.  We had my sisters and their families over today.  It was nice visiting with all of them.  Troy and Rylee had a blast!  Right after they left, Troy zonked out while sitting at the table.  Within 20 minutes from their departure, all 3 kids were napping.  I even fit in a 30 minute nap and even a shower!  Tonight after supper, Kris and I loaded up the kids in the strollers (we don't have a triple stroller so he took Troy and Rylee in the double and I put Weston in his carseat and used the large stroller) and took a little walk.  I was so bit up by the time we were done.  We came home and did baths.  I bathed Weston in the infant bath tub with the sling while Kris bathed Rylee in the sink.  Troy did his own bath after those two were finished and taking their bottles.  Right now, Weston is down for bedtime and Rylee and Troy will soon be out!  I am soo glad that Kris was home to help us adjust to this new life.  We still have to get into a new routine and hopefully that comes soon!  I can't even describe how good it is to peak over the railing into the crib at the end of my bed and see a little bundle all wrapped up sleeping.  AWESOME!  It's also wonderful that Troy and Rylee are so concerned when Weston cries or very curious about him. 

After 19 days, We're proud to say....

Weston came home today!  We've been home for about 6 hours and it's went well.  We had 1 little accident with Troy.  He slipped and his chin bumped Rylee's head leaving a bleeding lip.  Otherwise, Troy is very interested in feeding time especially nursing time and whenever Weston fusses he runs up to us to let us know.  Rylee is also very interested.  She crawls up and pulls herself up to see him on Kris or my lap.  They both were excited.  Rylee waves at him and Troy kisses him.  It's been pretty easy.  We had lunch just Kris and I (and Weston) and dinner as a family.  It's been a rollarcoaster ride the last 19 days but we are so so so happy to have Weston home. 

Genetics Appointment came and went...

I don't really know what to tell in regards to this appointment.  We walked in hoping, praying the high heavens really, that Dr. Giampietro would shine a magic light on Rylee and open a whole new world for her.  Unfortunately, that definitely wasn't the case.  After the mix up with Iowa City Genetics (they said they never tested Rylee, didn't have any records of it, turned out that after 2 hours on the phone with them, all those records were under "Baby Girl Klauer"...duh!), we got tons of records and diagrams that we hadn't seen before.  We even got the results for Kris, Troy and I, which is great!  The 3 of us have "perfect" genetic makeup (no one is absolutely perfect, everyone's is different but ours don't have to much or too little genetic material)!  We talked briefly about the nasal bones that were seen in the ultrasounds with Weston.  The presence or lack there of can indicate Down's Syndrome and we would know upon first glance of him, if he had Down's.  Dr. G thinks we're definitely in the clear there especially since there are no facial deformities and he's acting just like he should for his gestational age. 

What does Chromosome 6 deletion q25.1-25.2 mean for Rylee...

There is not an exact case of her deletion in the literature.  Therefore, we don't know much more than before.  There is cases of deletions that house her same deletion just a tad larger.  And those are what we have to work with.  Hydrocephalus, protein and metabolism problems,developmental delays, hormonal estrogen problems, facial deformities, deformities with the anus...are a few problems that are listed among that literature.  Rylee has Hydrocephalus, facial deformities, developmental delays and could very well have a protein problem and definitely has metabolism problems.  Estrogen problems, if there are some, will most like become a concern more around puberty time, I assume.

Rylee's future...

Rylee's future is not grim, at this point in time.  She has more problems, such as some with her heart and kidneys, could be lungs, largely decreased immune system, than those that I listed above.  She is meeting all her milestones just at a much slower rate than a normal 19 month old child.  Dr. G asked if we would like to have her "case" published in the literature.  We agreed, hoping that in the future some other child comes forward with the exact same deletion and we can use them as a reference or that we can help another family by not having to go through all the uncertainties like we have.  Dr. G took pictures of her, I know that sounds weird, but pictures can help.  We are going to go back for yearly visits to keep the literally updated.  Dr. G said he would let us know when it's published and if a med student uses her "case" as a case study.  All Dr. G could say was that not much is know about Chromosome 6 making it largely rare to have any kind of abnormality.  He also said that this was just a genetic accident.  It was nothing that I did or didn't do and couldn't be replicated by me and Kris again (which Weston has 100% completed our family so no worries there!).   Also banking Weston cord blood would have done nothing for Rylee.  It hasn't been proven that cord blood from a sibling can heal developmental delays or Hydrocephalus, only has in the individual who's cord blood was banked.  Stem Cell research is an extremely controversial study, some believe in it some don't.  I guess I believe that if could've saved the life of one my children or someone else, why not?  We didn't bank Weston's cord blood because of the chromosome uncertainties.  That may bite us in the rear later on but at the time it was the right decision and I am standing by it.

Weston Day 13 update

Technically right now Weston is 14 days old but I don't know exactly how he is doing at this very moment.  Probably filling his belly or having his belly filled for him!  Day 13 wasn't such a great day for me.  I was frustrated with the nursing.  These 12, 10, 13, 16 cc stuff is getting pretty old.  However, Day 12 he did take 20 cc for me.  That's the record so far.  He didn't want a bottle after nursing.  In the morning, I was sitting in the NICU playing with my sweet boy's beautiful golden head of hair when Lila with the annoying parents', doctor came in to see her for the day.  She announces that Ms. Lila was going home.  Now, Weston is the oldest baby there!  Well, there is only Weston and William (he did get leave and room with his mommy and daddy but had to come back when he couldn't keep his blood sugars under control).  She also announced that Mr. William would be circumcised today (Monday, August 16) and would be able to go home on Tuesday.  LOVELY!  If no other babies are brought to the NICU, than Weston will be all alone.  I guess if he is the only baby, maybe they'll work with him more on his feedings.  I think Lila was a lone ranger until Weston came along.  She was 4 days old then him and over 2 lbs smaller than him.  I am trying not to compare.  Each situation is different, except hers and Weston's are extremely close.  The thing that really bothers me is that both kiddos, Lila and William, are only children.  Who cares that Troy and Rylee are being left home and never get to spend any time with their momma?!  It's was Weston's turn to come home 12 days ago.  12 days ago, he was doing well.  I want to bring him home so freakin' bad.  I was going to stick around for the majority of the day.  I was hoping to do all feedings from 7 am to 7 pm as well as a bath before the 7 pm feeding.  I ended up going home after the 10 am feeding because Lila's parents were coming at 2 to take her home.  And I personally didn't want to see that, be there, hear it...so I came home.  I told Kristopher that he was more than welcome to go down and do the 1 pm feeding since the nurse, who was alone today with 3 babies and going to try to discharge 1 at 2 pm.  Weston was scheduled to eat at 1, William at 1:30 and Lila at 2 pm.  Now who do you think would get the shaft?  Weston!  However, Kristopher said that he didn't want to see that, hear that, be around that and didn't think that he could handle it any better than I could.  It took all my might and sole not to start crying while I was there and heard the news she was going home.  No other baby thus far has bothered me about going home.  I also haven't witnessed any baby going home, they're just gone when I get there.  However, I knew that I wouldn't handle it well, probably cry at their excitement, so I chose for my own good to go home.  It was better that way!  Weston rules the roast now.  We get to use the Serenity room.  The Serenity room is a quiet room in NICU that I could use to pump, nap or nurse.  It's really quiet!  You can't hear much from the NICU other than alarms or doors shutting.  It's actually a nice little room to have.  We used it a few times in the last couple of days.  However, Lila's parents always needed to take over because they preferred to use that room.  Now that she's gone, it's all ours!  Mr. William's parents can't take him in there because he has to stay on the monitors.  Weston gets unhooked and carried in there like a CHAMP! 

When I came home at noon, I pumped and decided to lay down.  I am still having the migraines and fevers.  I woke to a temp of 102 an hour later with chills and the whole bit.  I just can't get rid of that fever.  It's no wonder that little boy doesn't want to nurse, the milk is extremely warm and warms his belly right up.  I wouldn't want to drink 102° milk either.  The Acute care doctor said that it was perfectly fine for me to nurse him still even though I am on antibiotics for the UTI.  However, the antibiotics aren't working.  It's been the better part of a week, I only take them 2 times per day for 7 days, and I feel worse that I did a week ago.  I did get up and go back to the hospital for the 4 and 7 pm feedings and to do his bath.  I didn't know if I would be rusting at bathing a newborn but it all came flooding back as soon as I stuck him in, almost like auto pilot.  Nurse Candy, just let me do my own thing while she made him up a fresh bed.  The sheets on his "bed" are the exact same pattern as his crib set.  EXACTLY!  Hopefully, that rubs off on him!  He's also in an outfit from home so hopefully that also entices him to eat to come home.  We had a pep talk after his bath.  I simply told him he has to come home.  The Serenity Prayer is on the wall in the Serenity room.  It's what I need to pray for every single day! 

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuhr

I love that little boy!  It breaks my heart to leave him day after day after day.  It breaks my heart to have to constantly leave Troy and Rylee.  It breaks my heart that Troy and Rylee don't want mom to do anything for them, they want dad because that's who has been taking care of them for 2 weeks.  It breaks my heart that when I come home I don't even feel well enough to help put them to bed.  Weston needs to come for everyone's sake but especially Troy and Rylee.  They need their mommy as much as their mommy needs them.  Those 3 kids, and Kris, are the light of my world, my whole reason for existing, the reason I get out of bed everyday.  I need them all here with me together!

The best part of Day 13 was that my brother and his wife became parents again.  The trifecta of babies who were suppose to be born within a total of 39 days, all came a seperate week and are all squished in 18 days... 3 babies (technically of the 5, mine, Erin's, Jen's and my 2 friends, we were expecting, 4 were born in that 18 days)!  Can you imagine what our family holidays will be like?  Oh man!  The grand total of the 3 babies are 2 boys, Sawyer (July 28) and Weston (August 2) and 1 girl, Lily (August 15).  I ran over to the hospital to visit Lily today.  She was super laid back and had been resting much of the day.  Her parents were beat so hopefully she doesn't keep them up too much tonight!  Congrats Craig, Jen and Isabelle and Welcome Ms. Lily!

Today, Monday, in a few short hours, Kris, Troy, Rylee and I will be headed to UW Genetics clinic.  It's an appointment we've been waiting 18 months for and has finally arrived.  Too bad we're not taking Mr. Weston with us to be looked over.  Bummer!  Please pray that the doctors can give us some kind of insight on what this Chromsome abnormality is and how it will affect Rylee's present and future.