Some Pictures from our trip

December 8th 2006
Getting caught up Finally LOL….
Our trip to Florida was great fun I spent the last half of our vacation with no voice. I picked up laryngitis somewhere along the way …. Randy put his back out and its still out …Andrew ended up with a blister on the bottom of his foot and had to take lots of breaks along with ibruprofin the last two days but all and all we had a great time and didn’t want to come home ..
Our room was really nice 2 bedrooms 2 bathrooms with a whirlpool tub in the masterbath That bath felt so good after walking I swear 20 miles a day Rylan loved getting in too…. I have a feeling he is going to love the water he already moves his legs like a froggie in the water its so cute ….

We spent our first day shopping at walmart for a pack and play for Rylan and food for us to stock the kitchen and we ate breakfast in our room every morning and also had dinner a few times and lots of snacks to munch on …..

The first few days in the parks we tried to not eat during the day but changed our tune after a couple of days and started bringing snacks with us but that only lasted a few days too and then we started eating at the parks during the days you need food walking that much and breastfeeding …

Here’s our itinerary and some picture from our trip Sorry there’s not more, but I started this blog entry on December 8th its now the 18th and I still haven’t had a chance to get through all the pictures I would like to put up and resize ….

Day 1 wal-mart

Day 2 Universal studios

Day 3 MGM

Day 4 Bush Gardens



Day 5 Seaworld

A Milk Buzz at Seaworld Watching the show BELIEVE




Day 6 Epcot



Day 7 Magic Kingdom





Day 8 Animal Kingdom



Day 9 Islands of Adventure

Day 10 Animal Kingdom (again)



On The plane heading home

We're Back !!!!!!!!!!!

Time to get caught up …….
Where ‘O Where do I start ……
OK …………………………………………..
We went to Florida from November 4th till November 15 and had a great time …Rylan , Andrew and me and Randy enjoyed the whole trip ….. We took over 1000 pictures and I am working on getting them organized and will be posting some along with details from our tip soon ,I hope…………..

Yesterday was Rylans First ThanksGiving we spent it at grandma Jessies house … We had a really nice time ……….
Before we left I was was giving Rylan some tylonal for teetheing and then was wiping his face, he was in his jump-a-roo and he jumped right while I was wiping and I poked his face with my thumb nail, he started screaming, I felt so bad and stated crying myself it was so sad .. I am not even sure where I poked him he doesn't have any marks, so I guess it wasn't to bad, but it broke my heart, my poor baby………

When we got home he had his first taste of sweet potatoes and loved them ….So far he has eaten carrots and squash rice cereal and now sweet potatoes…. He also has started drinking water out of a cup

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Rylan now has his two front bottom teeth…He cut the first one on Halloween and the second a few days later…….

MMMMMMmmmm,,,,,,,,, Rice Cereal

Oh boy its been too long since I have made an update …..
Rylan has been enjoying rice cereal for a week now ..Last Saturday I had him try it again and he LOVED IT it was like he had been eating for years and we caught it all on video …..



We have been going out geocaching every weekend and that has been a lot of fun and we are getting some much needed exercise…Its funny me and Randy have lived here all our lives (well him born here, me here since I was 4 years old ) and we are seeing things that we never knew were here, like the totem pole at the collage (that we both went to LOL) and some parts of parks and bike paths, all new to us ……



New things Rylan is doing are grabbing both feet to play with them ..Yelling, yeah he likes to yell instead of scream when he wants something, maybe even just because he likes the way it sounds.. Its really cute at least for now its really cute…I can picture myself in a few years having to say “Rylan that’s enough yelling “ ……
This little baby boy is such a joy to have around ..I would of never thought I could be so happy again …But I am …..and it feels GOOD……

Rylan you are salve for your mama’s soul !!!!!!!!!!!!

My Baby Found His Left Foot.....

This afternoon while me and Andrew were scrapbooking... I looked down and Rylan had a hold of his left foot( he was in his bouncy seat) He has continued to play with it the rest of the evening ....

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We went Geo caching all day saturday then to Target to buy a highchair a jumparoo and a bigger baby bathtub...
Rylan likes all three......

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We tried rice cereal yesterday morning he didn't want any part of it....I really thought he would like it he has been soooo interested in what we are eating ......

Geocaching Today

We went geocaching today before Randy went to work it was fun …Randy spotted all the caches before me, but in my defense I was holding and looking at the GPS unit while he got to look around and explore , Well except for when he had me get out of the car and look all by myself for one….. I didn’t find it, he did when he got out to look…….. Ok in my defense we were beside a very busy HWY and I get nervous…. I have seen the shows on TV of the cops getting hit while giving out tickets on the side of the road…Told Randy I don’t want to do any more where we have to park on the side of busy HWYS …We are going out this Saturday to find some more…. I am planning on packing a picnic lunch for us …



Rylan really enjoyed getting to ride in the pack thing and napped when in the car … Have I ever mentioned what a perfect baby he is ??

One of the caches was at the cemetery where Wyatt and the girls are buried and we seen a new headstone for a baby boy born November 22 2004 (Wyatt was due about that same time ) and Died December 10 ? 2005 It really made me sad and I wondered what happened, was he sick or was it a car accident , you know ,why, what happened …
I also wonder what it would have been like to have Wyatt for a year to really get to know him and then loose him .. Its so sad ……….

He Reaches and He grabs

Rylan is really starting to reach and grab for things and still loves to sit and look at his hands...

Another one of his favorite things is running in place while he is in his bouncy seat ....This kid cracks me up with the faces he makes while he is "running off" I just know I am in for it in a few months LOL .......

Who in the heck lived my life when I was on bedrest ? This is the very short condenced version of our past week.........

Gonna try to catch up as quick as possible

Last Wednesday
Rylans 4 month check-up and immunizations. He woke up with a cold the day before had no fever till when we got to his appointment, then had a small fever, so we had to do the urine culture……..
What a pain in the butt..They put a bag on him and I had to bring it back in as soon as he peed and if it was after hours take the pee to the hospital, of course he peed at about 4:30 so by the time I got back into town it was after 5 pm so I took it to the hospital….
His urine was ok....It was a long day, he ended up having fever of 102 that night from the shots and it took me till 10 pm to find out his urine was clear....
The hospital had lost the results ( they did call yesterday and say there was some bacteria but its probably from being bagged instead of a cathader and since his fever is gone he is probably fine)

He weighed in at 16 lbs 11 oz

Last Thursday was the funeral for Chris there were a lot of people that loved him there by far the largest funeral I have ever been to…

Friday
My friend Rena was having a yard sale si I brought over some baby things and maternity clothes and stayed till about 11 am then came home

Saturday
Went to a geocaching meeting and met some fellow geocachers… We can’t wait to get started on our new hobby….

Sunday
I know we missed church I think we just stayed home…

Monday
Shopping at wal-mart then got a call that my grandma was going to the emergency room….She’s ok now and will be seeing a heart doctor soon….

Tuesday
Finished the shopping we started Monday went to bed at about 7 and got a good nights sleep rylan only woke up once the eat and slept till 7:30 am ….

Today we received our GPS and we are hoping to find our first (on our own) Geocach tomarrow …

Project Roll Over was A Sucess

Sunday Rylan Rolled over on his own and we caught it on video..

Earlier in the morning Randy was doing floor time with him and did give him a little nudge at one point and he rolled ...

Then after Randy went to spend time with his friend whose son died..

My friend Joanna and her baby Josiah the one that shares Rylans b-day came over to visit..

We had the boys on the floor, Rylan almost rolled over then, but I stopped him, so Randy coud watch when he came home...

After Randy got home we got out the video camera put Rylan on his belly and he rolled over on his own within 30 seconds ...He hasn't done it again since ....

A Tragedy Saturday

Saturday a very good friend of Randys/ours... Only son/child 19 yrs old was killed in a motorcycle accident he went head on into a dump truck and was killed instanly...Its so sad and brings up so many emotions...The total devastation, its just heartbreaking...

IN TRAINING .................

For rolling over ..........

TUMMY TIME (Rylan hates it so it only lasts about 5minuts at a time ..



Look Blog Readers NO Swaddle


Rylan did OK his first night not swaddled, went to bed at 8:30pm and woke at 10:30pm then at 2am awake again. I left him in his bed he fell back asleep then awoke at 3am Daddy got him up to bring to mommy to eat Daddy said he was all smiles when he saw daddy......Then he woke again at 5:30 am Mommy tried the pacifer and he took it but still wanted to have a snack 5 minutes later ..We got up for the day at 8:30 am .....

A beautiful Voice

Rylan started sleeping in his big boy crib the night before last (Tuesday the 19th of September) he LOVES it he didn’t get up yesterday till 9am he had woke up to eat at 11pm and 5am (the Portland trip messed up our fancy little 3am feeding)
Today at 8 am me and Randy both awoke to the sound of Rylan talking up a storm with his fish mobile how darn cute it that…………….

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Seems that other babies Rylans age are already starting to roll over.. Tomarrow we are going to pick up some blanket sleepers and quit swaddling and start doing more tummy time...I think between being sick, having surgery and being swaddled it has put him a little behind..
Plus I am sure it doesn't help that, he is so cute and cuddley that I want to hold him every chance I get...I can't help it I am in LoVe....

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Randy did tractor work last Saturday and we already planted our grass seed…We have our in ground sprinkles and hope to put them in soon…
Check out our before and after pictures more to come soon as the grass sprouts…





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Sunday was spent at Rylans Grandma and Grandpa Js house, his Uncle Nick ,Aunt Margo and Colin, Megan and Caitlin came to visit from HI…They actually came by our house to visit the Thursday before we left for Portland too. It was a nice visit but to short as always …Anyway on Sunday we were having a great time and then it dawned on me I FORGOT to give Rylan his morning antibiotics (Septra)…So we had to leave early it was about 5 in the evening..I felt so bad poor Rylan ,Thank God he doesn’t have any signs of a kidney infection !!!!

Now I have my birth control pills right next to his medicine and I won’t take my pill till I have given him his Septra, my BCP are marked with the days of the week so at a glance I can know for sure of we have had our medicine for the day ,Brilliant I am so Brilliant… I let Randy know to ask me if Rylan and I have had our medicine, we don’t need me to end up pregnant and Rylan in the hospital, that’s for sure….

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One year ago today, I quit smoking, had to make sure that little blue line was for real first ….
Congratulations to me !!!!!!!!!!!!!!!

ONE YEAR AGO TODAY

YUP..One year ago !!!!!

LIFE is GOOD.........LIFE is BUSY !!!!!!!!

The title says it all....Hope to get a update post up soon ..Just wanted to let people know that all is well......

Life getting back to Normal

Rylan the day after we got home from his circumcision... Thank goodness for Tylonal with codine..



Do you all think he is going to fit in there for 2 more months ? LOL

We are Home

Packed up and ready to go



We didn’t get to stay at the Ronald McDonald house.. So onto the internet we went to get reservations for a room we again used priceline but had to pay $70.00 for the same motel we had last week for $55.00…

Our Motel



We got to our room about 5 pm then went and found exactly where we needed to go in the morning ..We have been up to OHSU quite a few times with Mindi and as a matter of fact that’s where Randy had his vasectomy reversal done…(Rylans doctor and Randys Vasectomy doctor are partners how’s that for a coincidence. Last week Rylans doctor told us that Randys doctor practiced doing reversals by sewing cigarette papers together without tearing them back in the 70’s LOL)



Then we ordered up some Chevys Mexican food, picked it up and ate at the motel, played with Rylan then off to bed about 9:30 …I place two wake up calls one for 12pm so I could feed Rylan and another for 3:45 am I planned those times because I didn’t want Rylan waking up wanting to eat at 2 or something and then not want to eat much at 4 am (he couldn’t eat after 4:30 am…..It worked perfect..
I kept Rylan awake after he ate because I knew if I put him back to bed he would want to eat soon As I woke him up..We left the motel about 6:30 am and arrived at the hospital at about 7:30 to get checked in…



We seen Rylans doctor in the hall and asked him on a scale of 1-10 how important is this to have done he said it was about a 7 …Randy and I decided to go ahead and have it done …We don’t want Rylan to go through what he did when he had his kidney infection ever again, although this doesn’t guarantee no kidney infections its supposed to reduce the risk quite a bit…I also thought maybe we could just wait and see if Rylan is infection free without it but the thought of him getting sick and having it done when he is older didn’t sound to appealing either…
Rylan went in for his sugary at about 8:30 am me and Randy went down to get some breakfast while we were sitting there eating it was about 9am and here comes the nurse that was going into surgery with Rylan….. Randy and I didn’t know what to think but our hearts stopped for a minute till she was able to tell us that we didn’t sign on of the papers (A consent for sugary)we needed too and they didn’t want to start with out it…. I don’t blame them after me and Randy having all out doubts about the circ. and questions for the doctor …Whew……….We signed she left and then we finished our breakfast and walked around the hospital for about a hour we had a pager the doc said it would take about 1 ½ hr it was scheduled for 2 hours but he didn’t think he would need that long…
We took the stroller with us, at first we had the covers open and people we looking at us kinda funny ..
So we closed it up while we walked around people would go ohhhhh when they seen the stroller and it felt like we were playing a joke on everyone… Heck I almost leaned down to talk to Rylan a couple of times, it’s the longest I have ever been away from him except for my on a trip to wal-mart while he was asleep and Randy was with him …..

Rylan came out of the surgery about 10:30 Doctor said he did very well and when he looked inside Rylans bladder everything looked good his bladder is smooth on the inside just like its supposed to be and that ureters look like the come into his bladder in the right place so he will probably be a good candidate for the procedure called deflux It the one where they put polymers in his ureters to keep the urine from going back up…he even gave us a picture of the ureters and the inside of Rylans bladder will scan them and put them up later……



Finally we were able to go into see Rylan about 15 minutes later My poor baby was still out of it and doing that nnnnn…..nnnnnnn…..nnnnnn…,.. sound My poor baby he had a iv in his hand and a diaper on and blankets covering him …The nurse showed us his pee pee and my heart was so sad for Rylan he has about 10 stitches …they are the kind that dissolve so we won’t have to put him through getting them taken out at least…. The one nice thing is that they put him to sleep using the gas mask so he didn’t have to feel them doing the IV… They had to try in a few different places at least twice in the foot that we could see and the one poke that worked in his hand …The nurses said the its harder to get blood or do IV’s in healthy babies because they are soo chubby.. …..They also said how much like the Gerber baby he looked and they loved his name that he was the first baby with the name Rylan they had seen….
..We told him we were there and talked to him for a while before I had the nurse help me pick him up …It so scary picking him up he was floppy and making that sound but we managed …



The nurses said he would have to be nursing well and peeing before we could leave ….We asked how long it usually takes babies to pee and they said it could take 4 to 5 hours Oh dear. We really didn’t think it would take Rylan that long ……
I decide to feed him and get him full so he could pee, I was surprised that he was ready to eat and did so well I knew he would be hungry but he just looked so out of it….We were still waiting for him to pee at 3:00pm We were worried and starting to get desperate we had already been up since 3:45 am and had a 5 hr trip back home to drive in a van with crappy headlights …
Why hadn’t he peed….



We tried laying him in his bed thinking maybe since we were holding him he couldn’t concentrate on peeing ..Then we tried putting on him coming home outfit then we tried putting his feet in warm water then nothing was working ..Rylan was getting puffy from all the IV fluids and the nurse took it out….Then Randy remembered the old radiologist trick that Dr Hudson had told him about … It involved pouring warm water on Rylans bladder..(( the nurse called the doc to make sure we could try it )) and we tried at first nothing was happening so the nurse massaged his bladder while pouring the water and about 5 minutes later waa…laa… Pee Pee ……..That was at 4:30 pm and we out of there and on the road by 4:45pm …..
Rylan slept the whole way home..They had also given him something called a coddle block it’s a shot in the base of his spine to numb things kinda like a epidural I am so glad he had that I felt bad having to strap him into his car seat…We arrived home about 10pm, fed Rylan, unpacked the van and got to bed about midnight..Rylan has been nursing more often and is doing really well..He has Tylenol with codeine for the pain and he hates it. I have to just give him a few drops at a time or his will spit it out …Even doing just a few drops at a time he still manages to save some up to spit out ….
All in all it wasn’t to bad and I am just glad to be home and that its over and we don’t have to worry about it …His next thing he will get done is a renal ultrasound in 4 months and then another VCUG in a year then the Dr. will decide what procedure Rylan will get ..There is also a 20% chance that he could outgrow it and not need any procedures ..So for now we are done and hopefully he not not get anymore kidney infections…… Oh yea he will still need to be on his septra antibiotics till his reflux has been fixed or he outgrows it ……..

Getting ready

Getting ready to leave for Portland Its 7:30 am I thought Rylan was waking up at 6:45 am I ran my boppy and water into the living room and turned on my little fireplace heater went back to get him and guess what, he was ASLEEP !!!!!!!!!!!
He is a little trickster sooo while waiting for him to wake up I finished packing his suitcase started some laundry made sure my advil bottle is full, checked my email and I was thinking about hoping in the shower but nixed that idea because I don’t want to have to
1. Nurse him in a towel while I am still wet (Its kinda cool this morning)
2. Listen to him cry while I get dressed

So now I wait ….Thought I would update my blog…

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Dear Rylan
We had a nice trip over to your Grandma Marys house yesterday to drop off Andrew….We stayed for lunch we had buffalo meat apple salad and regular salad I didn’t care too much for the buffalo daddy thought it was OK ….We stopped at the river to fee you on the way home then to wal-mart to pick up diapers and wipes for our trip to Portland …
I don’t want to go and me and daddy decided that we would talk with the doctor again to make sure that you really really really have to have this done …I know he is going to say yes……..
I am not sure why its so hard on me ….I mean yea it sad that you have to get it done, but Its really tearing me up inside, more that it probably should be …I will do anything to keep you safe… I just keep asking why you and why us….Its Just not fair….I am very thankful that its not some really horrible thing but after all that we have been through, it just seems like I am paying off some bad karmic debt at the expence of my chilren or something…..If that is the case, I hope I am paid up for good …….
7:45 and your still sleeping, I think I am going to go wake you up I want to give you a bath before we leave and we have to be ready to head out the door by 10:30 so if we get the Ronald McDonald room we can be there by 4:30 this afternoon………
Love MOM

This made me cry

THE FACES BEHIND THE NUMBERS.......

Is there a fine line between crisis and epidemic?????…

The most current statistics read. 1 in every 8 babies is born premature.

1 in every 28 babies is born with birth defects.

Approx 4000 of these babies lose their fight for life.

Many times I sit and think about these numbers, the statistics of a crisis that is still far too silent. The numbers are staggering. The facts are truly heartbreaking.

And the reality….

Means ….

Somewhere right now…..A couple is celebrating the news they are expecting a Baby, unknowing to them their world is about to change forever.

Somewhere right now…..Bililights are being turned on.

Somewhere right now…..A Mother is on total bed rest.

Somewhere right now…..Blood gases is being drawn from a tiny life.

Somewhere right now…..An expectant Mother is sicker than she has ever been before.

Somewhere right now…..Cryotherapy just began.

Somewhere right now…..An expectant Mother is lying in a hospital bed praying for more time.

Somewhere right now…..A baby is being diagnosed with IURG.

Somewhere right now…..Parents sit hypnotized watching a fetal monitor

Somewhere right now…..A Mothers water just broke many weeks too soon.

Somewhere right now…..A Mother is experiencing pre-term labor.

Somewhere right now…..Parents are decorating a nursery for a baby who will never be using it.

Somewhere right now…..A baby is being placed on high frequency ventilation.

Somewhere right now…..A Mother is watching an ultrasound realizing something is terribly wrong.

Somewhere right now….. A Mother’s baby just stopped kicking.

Somewhere right now….. Expectant parents is given no hope.

Somewhere right now…..A Mother is receiving medication in hope of keeping her pregnant.

Somewhere right now…..A toddler still wears a pulse oximeter.

Somewhere right now…..A Mother is lying in a hospital bed crying in fear of what is soon to come.

Somewhere right now…..A baby is receiving Surfactant Therapy.

Somewhere right now…..A mother is being forced to birth a still born baby.

Somewhere right now…..ADoctor is performing an emergency C-Section.

Somewhere right now…..A Mother is having an amniocentesis.

Somewhere right now…..An umbilical catheter is being inserted.

Somewhere right now…..A Mother is diagnosed with preeclampsia.

Somewhere right now…..A baby is being taken from it’s protective world, and placed in a very clinical environment.

Somewhere right now…..A Mother is standing next to a plastic box looking down helplessly at her baby, making deals with God.

Somewhere right now …..A baby is being baptized in a NICU.

Somewhere right now…..A neonatologist is painting a grim picture.

Somewhere right now…..A Parent never imagined they could feel this kind of heartache

Somewhere right now…..A parent lives in fear, of all they do not understand.

Somewhere right now…..A baby has just exceeded its parents insurance limitations.

Somewhere right now…..Regardless of the diagnosis a Parent refuses to give up hope.

Somewhere right now…..A Baby is receiving Nitric Oxide.

Somewhere right now…..A Baby is having a G-Tube inserted.

Somewhere right now…..A Baby is being given a diuretic.

Somewhere right now…..A Baby just crashed.

Somewhere right now…..An apnea monitor just alarmed.

Somewhere right now…..A Mother is frantically dialing 911 because her baby just stopped breathing.

Somewhere right now…..A Baby is being placed on echmo.

Somewhere right now…..A baby’s life hangs in the balance.

Somewhere right now….Parents are rooming in with their baby.

Somewhere right now…..Parents dreams of taking their Baby home is being shattered.

Somewhere right now…..A Mommy is longing to touch her baby, that is too fragile to tolerate her touch.

Somewhere right now…..A baby is being placed on a vent.

Somewhere right now…..Parents are looking for someone to blame.

Somewhere right now….A parent is signing consent to let their baby go.

Somewhere right now…..A mother is replacing bandages around her baby’s newest procedure.

Somewhere right now…..A Baby is being buried.

Somewhere right now….The pain, uncertainty, and fear has become more than a couple can bear.

Somewhere right now…..A Baby is graduating to a C-Pap.

Somewhere right now…..A Mommy is singing to her baby in a whisper.

Somewhere right now….A parent is being awakened by an apnea monitor.

Somewhere right now….Medical staff are trying to stabilize a baby.

Somewhere right now….A Mother is longing so much to hold her baby, it hurts.

Somewhere right now…..A parent is speaking to a medical supply company.

Somewhere right now…..A Baby is being bagged.

Somewhere right now….Parents are being medically trained to take their baby with special needs home.

Somewhere right now…..A baby is getting their heel stuck again today.

Somewhere right now…..A Mother is experiencing Kangaroo Care for the first time.

Somewhere right now…..A baby is experiencing tachycardia.

Somewhere right now…..A baby is getting their first bath in a plastic spit tub.

Somewhere right now…..A Babys nursery light remains off.

Somewhere right now….A nurse is inserting an IV in a baby’s tiny head.

Somewhere right tnow…..A central line is being inserted.

Somewhere right now…..A candle is being lit for a baby.

Somewhere right now…..A Mother is giving her child a breathing treatment.

Somewhere right now…..A family is having a picnic at a grave site.

Somewhere right now…..A home is being remodeled to accommodate a special needs child.

Somewhere right now…..Parents are walking out of a NICU for the last time with empty arms.

Somewhere right now…..A Parent is wondering what if???

Somewhere right now….A Mother is placing a teddy bear on a tiny grave.

Somewhere right now…..A Mother is awakening in tears from a nightmare.

Somewhere right now…..A child is being given Botox injections, in hopes of easing the effects of Cerebral Palsy

Somewhere right now…..An infection is developing around a central line.

Somewhere right now…..A respiratory therapist is adjusting pressure on a vent.

Somewhere right now…..A baby is going home after months in the NICU.

Somewhere right now…..A Baby’s feeds have just been stopped.

Somewhere right now…..A neonatoligist is sitting silently in prayer.

Somewhere right now….A Mother is feeling guilty.

Somewhere right now…..A Baby is experiencing Bradycardia.

Somewhere right now…..A Mother is walking into a NICU for the very first time.

Somewhere right now…..A small child is being fitted for leg braces.

Somewhere right now…..A Baby is enduring the examination for ROP.

Somewhere right now…..A Father is balancing a role of primary care giver to siblings at home, and work to allow Mom more time with her baby.

Somewhere right now…..A Mother is pumping breast milk to put down a feeding tube.

Somewhere right now…..Parents are searching for a pre-school that will accommodate their special needs child.

Somewhere right now….Siblings are being sent to stay with Grandparents for reasons they do not understand.

Somewhere right now…..Parents are trying to explain to a small child their sibling will never be coming home.

Somewhere right now…..A home is being remodeled to accommodate a wheel chair

Somewhere right now…..A family is living in hibernation to protect their Baby from the health dangers of the outside world.

Somewhere right now…..A Baby is being intubated.

Somewhere right now…..A parent is searching for some kind of normalcy.

Somewhere right now…..A parent is hearing their baby will be severely visually impaired.

Somewhere right now……A surgeon is operating on a heart the size of a strawberry.

Somewhere right now….Part of a baby’s intestines are being removed.

Somewhere right now….A parent is replacing monitor leads.

Somewhere right now….A child is playing as far as it’s oxygen tubing will allow.

Somewhere right now…..A parent is picking out a tiny casket.

Somewhere right now…..A shunt in being inserted into a tiny baby.

Somewhere right now…..Faces are being missed from a family gathering because of the health risk it poses to a Baby.

Somewhere right now…..A baby is aspirating.

Somewhere right now…..A Mother is deciding which one of her babies in the NICU needs her more.

Somewhere right now…..A Mother is too frightened to go home

Somewhere right now….. A NICU nurse is consoling a Mother.

Somewhere right now…..A Baby’s kidneys are failing.

Somewhere right now…..A child is being made fun of because they are different.

Somewhere right now…..A Mothers heart is breaking for them.

Somewhere right now…..A Baby is having a feeding study.

Somewhere right now….A mother is watching anxiously as her near 2 year old child takes its first steps.

Somewhere right now….A Mother is untangling her child from it’s oxygen tubing.

Somewhere right now….A child has just pulled out its g-tube.

Somewhere right now…..A parent sits anxiously awaiting test results.

Somewhere right now…..A baby is being extubated.

Somewhere right now….A Baby is having an echo cardiogram.

Somewhere right now…..A Surgeon is performing a lifesaving procedure.

Somewhere right now…..A Child is being fitted for hearing aids.

Somewhere right now….A Child is having a sweat test.

Somewhere right now….A baby is receiving a blood transfusion.

Somewhere right now…..A Mother is kissing her baby for the very last time.

Somewhere right now….A parent is inserting a feeding tube.

Somewhere right now…..A parent is feeling like they can’t go on.

Somewhere right now…..A Nurse is drawing blood from a tiny little vein.

Somewhere right now……. Grandparents watch helplessly.

Somewhere right now…..A parent is picking out frames for the new glasses their small child will be wearing.

Somewhere right now…..A child can only sit and watch children play.

Somewhere right now…..A Baby is being released to come with feeding tubes, oxygen, and monitors.

Somewhere right now…..A Mother is putting hearing aids on her Child.

Somewhere right now…..Parents are sitting with a Social Worker.

Somewhere right now…..Parents are holding a Memorial instead of a birthday party.

Somewhere right now ….. So many babies are enduring so much more, with some procedures surpassing the imaginable…..

Far too many.....................

Taking an overall average, the average person reads approx 200 words per minute. In the length of time it took you to read this.

7 Babies have been born premature

2 Babies have been born with a birth defect and

1 Baby is preparing to receive its wings.

Rylan the talker boy

Dear Rylan
You are growing so fast and getting so smart you are really cooing and talking up a storm Its funny if you are sitting your pretty quiet but soon as I stand you up on my lap you start talking to everything one of your favorite things to talk to is me and daddys picture on the wall, and when I take you into your bedroom (that you still don’t sleep in) to change your diaper its almost like you say hello to it defiantly an acknowledgment that you know its your room….

You also like to run in place you get those little legs going a mile a minute especially when you are excited. When were walking through Albertson’s the other day you were moving your legs slow like you were walking along side of me I just know daddy and me are in for it when you get mobile.

When you wake up in your bassinet you kick kick kick your legs that’s what wakes me up to feed you LOL… Daddy wants you to sleep in our room till you are 6 months old…. I don’t think you will fit in your bassinet that long and told daddy, his reply was you can scrunch up your legs you like sleeping froggy style anyways …We’ll see how long you fit in there….

Love mommy

Going back to Portland Sunday

We are heading back to Portland Sunday and Rylan will have his circumcision surgery Monday morning.. He is even going to have to get stitches …… I am so glad that I never took the opportunity to watch any of the circumcision videos on the internet… My heart is very sad for my baby boy…
I was very lucky to have found a website for another baby boy that had to have surgery by the same doctor that is doing Rylans and his mother emailed me to let me know what his recovery was like and it sounds like it shouldn’t be too bad …..

Rylan will not be able to eat after 4:30 in the morning and we check into the hospital at 7:30 am the surgery will start at 8:30 am.. Please keep him in your prayers You all know our luck with statistics and that really scares me, but this has to be done ….

We are hoping to stay in the Ronald McDonald house they don’t take reservations we just call Sunday morning and see if we will get a room then we have to be there to check-in by 4:30 in the afternoon…..
All the missed days of work for Randy and the gas, motels and food not to mention the medical cost are starting to build up so to able to stay somewhere for free would be a great thing for us……

Pictures from last weeks trip to Portland

Feeding the ducks with daddy our first stop for Rylan to eat on our way up



At the doctors office



A quick trip to Krispy Kreme on the way home

Home from Portland with mostly Good news

Home Again

Here’s a rundown of our trip to Portland to see Rylans new doctor (Pediatric Urologist) he was very knowledgeable explained everything very well and was easy to talk to both Randy and I liked him very much …
The good news is that Rylan reflux didn’t seem to be real concerning to the doctor … He even said that in 20% of cases in boys that it improves.
The left kidney that we were told was enlarged is actually a little on the small side but slightly swollen, again not real concerning but something to keep an eye on…
The bad news is that Rylan is now going to have to be circumcised. His reflux did not happen because he wasn’t circumcised. It’s just that with what he has ((The doctor called it cycling meaning that when Rylan pees half comes out and half goes up his ureters to his kidneys)) that means any little bacteria goes straight up in the kidneys and we need to keep as much bacteria out as possible…
Jeeze can you believe our luck out of all the baby boys that do get circumcised which is way more than don’t…Our baby has to have this problem and now we have no choice about it and have to get it done …
We also learned that his peepee is not strait, it’s twisted sideways
Soo next Monday we will be going to Portland again for the circumcision (and to fix the twist) we have gone past the point of having it done at a local doctors office. Rylan will have to be put under with anesthesia and will need stitches. We are planning on staying in Portland for the night after unless he is still a little doped up and looking like he will sleep a lot for the trip home….
The doctor said I could go back to using Johnson’s baby wash for Rylans baths……. I miss the smell so that’s going to be nice..
It already 8:30 pm I wanted to make a longer post but I am bushed and heading to bed.

Our Weekend

I am changing some things on my blog so if its looking funny that’s why....
I am going to try new codes and things …I am also going to start writing my blog as letters as Dear Rylan well at least I am going to see how that works out for a while …So here we go.

Dear Rylan this past weekend has been very busy we went to JC Pennys at the mall and had your pictures taken on Friday OMG you smiled in every one you are a big flirt and all the picture girl had to do is say your name tickle you with a feather duster and you were all hers ……I can’t wait till the 15th when we get to go pick them up…daddy really likes the one of me and you together and wanted a 10x 13 LOL I talked him out of it I know that all my flaws would show on a picture that big and I am a bit worried about how I am really going to look on a smaller picture but daddy likes it and I like daddy (smile)
After pictures we drove over to Les Swabs to see if our van tires needed balanced, no it didn’t need balanced, it needed new tires…The back left tire was starting to split {{{{{{{YIKES}}}}}}} glad we had that looked at before our trip to Portland ((I see daddy has reserved us a room through price line I want to see which one but daddy’s still sleeping and I don’t know the passwords to get in there))
After we bought or tires Grandpa John and grandma Mary took us to the Roadhouse grill for dinner you can toss your peanut shells on the floor there!!! It was really good and we came home with too full bellies …
Speaking of the ride home it took about an hour longer than usual because you all the sudden developed a strong dislike for your car seat (Hmmm that’s not good for our upcoming 5 hour car ride ) We had to stop 3 times first time I feed you and you we happy and smiling till you went back in your car seat ….second time we stopped by the river and soon as I took you out o0f your car seat you were happy but I fed you some more and we took pictures down by the river …soon as I put you in your car seat you started crying again I looked all over to see if some thing was poking you or something couldn’t find any thing …A few miles down the road we stopped again by a church to change your diaper and see if that would help Nope it didn’t your pretty much cried the whole way home I sat in the back with you and held your hand but it didn’t help… You did manage to fall asleep about 5 minutes from home………
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Saturday We went to a surprise anniversary party for your Grandma Jessie and Grandpa Joe It was a surprise for Grandma ..We had to wait down the road at the park and daddy called them and said we were broke down at fruitdale market and needed a jump-start daddy said I was getting frantic because of and how hot it was outside…. Poor Grandma Jessie was worried sick about you sitting in a broken down hot car ((Please God don’t let us really break down on the way to Portland) It was a great party and we again came home with really full bellies…….. Grandpa Joe said you are one of the best-behaved babies he has seen …… you didn’t fuss at all …

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Sunday we have stayed home all day relaxing and doing laundry, vacuuming, mopping and getting ready for our trip… I hate coming home to a messy house after going away .. It has taken me from since about 9 am this morning till now 6:30 PM to just get this post wrote up, no our house isn’t that big, I also spent time outside and watching some TV and making a new header for your blog anyways it has been a nice day …..Going to sign off for now …….

I love you

Love mommy

VCUG Picture

The pic should show up here if not try back in while

Appointment Moved up to Tuesday

We are going to Portland to the Pediatric Urologist this coming Tuesday September 5th at 9 am… That means we will leave either Sunday or Monday …
I had called this morning to check and see if they wanted us to come before the 26th I was wondering why they hadn’t called …Randys brother even called last night to see if they had moved his appointment up.. Good thing I called……..They did not received the fax from our doctor …..
I was kind of hoping that they would say “oh we see this a lot and as long as he is on the Septra it would be fine to wait till the 26th “no such luck for us… it really is scary to be able to be seen by a specialist so quickly… It makes me more worried..
But then again I really just want to get there and have him look at all the tests results and then tell us it is going to be fine and they can fix Rylan up easily and he will be good to go……….
We are picking up a copy of the tests on CD from the hospital here to take with us and will try to make a copy for us to keep if it works out I will post a picture of Rylans ureters so you all can see how swollen the one is That’s the one that really worries me By the size of it I think that they didn’t make the grades high enough and would put it up there at a 25 or a 50 I don’t know It just scares me… So we shall see .. I am really struggling to keep a positive attitude… Its so hard when you have been slammed so many times with bad news ………

No Phone calls yet...Dang It !!!!!

No Calls from the pediatric urologist yet I am thinking I will give them a call tomorrow ..
I am adjusting pretty well to the fact that my little guy is going to need surgery I mean WTH if its my kid seems there is going to be something that needs attention ..It really really sucks.....
I can almost hear people thinking “What’s so wrong with her that all her kids come out with birth defects or dead …
Someone and Randys work even asked him “Don’t you ever have good luck” Yea I know...... Its pretty sad ......

{{{{{{{{{{BUT}}}}}}}}}}}}

You should see this kid in real life he is about as freaking cute as a baby can get..Tonight I put him in his exersauser and he loved it, stood up and was reaching for the little steering wheel My camera batteries were charging so I didn’t get any still picture but did take some video….. I felt bad that I didn’t wait till tomorrow till daddy was here so he could watch him in it to..But I didn’t expect him to have such a great time in it.... I thought he was still too young...
But hey Daddy told me earlier that he had already tried him out in it …Hmmmm I hadn’t known that……….
Anyways back to how cute my kid is..... He giggled for his Grandma Mary and he is really figuring out his arms and hands this is him playing with the froggie Grandma Mary bought for him while he was still a newborn in the hospital
I am going to have to add the picture in the morning its late the camera is in my room and I am tired
It has crinkle paper in it and a rattle and Rylan loves looking into its big bulgy eyes …….My baby is cute… cute……. cute …..

Our Little GIGGLE Boy

On a better note Rylan is starting to giggle he will start by cooing and then be so pleased with himself he starts smiling and giggling its sooo cute ....
Also Randy went and picked up our paper tickets for Disney world from AAA on his way to work yesterday We are excited about going and hoping Rylans being sick doesn't make us have to postpone it...Poor Andrew has had it put off so many times already ........

Its Grade 4 and Grade 5

Doc just called and I called her back Rylan has Grade 4 reflux on one side and grade 5 on the other......She is faxing the reports up to Portland doc to see if our appointment needs moved up... She also said she was peeved at the ER doc....The other doc at her office (Blood draw doctor) the one that admitted Rylan to the hospital is the head of pediatrics and would be having a talk with ER doc ..
Also Blood draw doc called last night about Rylans urine they took a sample of at his VCUG and so far Rylans urine looks ok and they are still growing the culture I think he is fine though he has had no more temp since Sunday.....

Can you believe this.....Its like some bad story out of the bible namely JOB

If its not one thing its another ...Rylan is doing good through it all though, hardly even cried the first picture of him below is after they put in the cath, but before they filled him with dye he only cried when they filled his bladder up to force him to pee that’s also when the dye went up into his kidneys..
I am feeling much better after reading that its 98% fixable I still just wish it could of happened to someone else maybe that’s mean but its how I feel.... I am so tired of being the center of all the drama KWIM ...

QUOTED FROM ONE OF THE LINKS ON THE LEFT
How is reflux evaluated?

Children who are suspected of having reflux should have a renal ultrasound and a voiding cystourethrogram (VCUG). Based on these studies, reflux can be classified into five grades - grade 1 is the least and grade 5 is the worst. Mild degrees of reflux have a good chance of resolving spontaneously with age. Chances of resolution with high-grade reflux (grade 4-5, or reflux related to an anatomic problem such as a long-standing obstruction) are much lower.

VCUG

Rylan does have reflux it was very obvious from the test …Randy and I got to stay with Rylan and see the dye and how it flowed……..
The left side urter was huge compared to the right side and I am sure it’s a grade 5 the left side also had dye going up to the kidney but it wasn’t all bloated up …
Our doctor is supposed to be calling us in the next day or two to tell us what to expect next…….From what I have seen on the net it looks like surgery will be needed ….

Randy and I are crushed, but at least it looks like its fixable…

Here's some webpage links about it

http://www.pedisurg.com/PtEduc/Vesicoureteral_Reflux.htm

http://www.healthsystem.virginia.edu/uvahealth/adult_urology/vesicour.cfm

Today, Monday VCUG day ..

At 12:45 today Rylan gets his VCUG... That is where they check his bladder with dye and make sure his urine is not going back into his kidneys ......Also going to have them check his urine because of his fever and trip to the ER yesterday.........

We also have made his appointmewnt with the pediatric uroligist in Portland for the 26th of September .......

Doing time in the ER

Sunday after church I thought Rylan felt a little warm So I took his temp and it was 99.9 under his arm which it 100.9 in the bum ..We were told to call and get him in if his temp goes 100. I waited 20 minutes and took his temp again with his clothes off and it went to 100.9 which equals 101.9 so we called and were told to head to the ER …
God I hate that place we had to sit in the waiting room for about 1hour and 45 minutes.. Randy and Rylan sat in a waiting room right outside the ERs waiting room and Andrew and I ended up joining them when I discovered we could hear them call our name out there…
I hate being around the sick people and am going to talk to Rylans doctor about rushing in with every temp of 100 its not that high of a temp considering we have teething coming up and just the simple cold season…
ITS GONNA BE A LONG WINTER ……
Anyways the doc came in saying “I’m the Brady bunch dad” Well gee that’s nice, but my luck with children hasn’t been as good as his I have been through enough crap that now simple things for others are just never that simple for us he said Rylan has a cold and patted me on the back and was sending us on our way ..
Randy was like um’ no we have lost 3 babies and we want to make sure he is ok so the Brady bunch doc says OK we will do a catheter but we said lets try a bag first doc said ok …We thought about it and Rylan is getting his catheter Monday so we decided to just wait till today and have them test it at his catheter… Other than the fever he was acting fine and last night at his 3 am feeding the we woke him up for he had no fever and no tylonal since earlier in the evning so I am not sure what was going on I just know that it seems silly to run to the ER when he is not really sick ..The ER doc made me feel like I was just being a over worried parent before he knew about the other babies …Even if I hadn’t lost the other babies …..
MY DOCTOR SAID to call and get him in when he has a temp of 100 or more …..
HELLO I don’t want to spend my Sunday a the ER……. We had plans !!!!!!
Please pray that we have no fevers this winter and especially when we go to Florida ….

TidBits

My blog has become like a episode of Dragnet you know…Its like this, “The facts and nothing but the facts ma’m” and I hate that, not that I am a great writer or anything but I want Rylan and any of his (or Mindis or Andrews) children {{{{{{my grandchildren}}}}}} to know about other things that I think about or that Rylan does…
Even the little things like he is back to pooping in just about every diaper I know he is just going to love that little tidbit of informationLOL and That he loves to watch TV.
At first I thought he just liked “The Dog Whisper” because it was all we watched for the middle of the night nursing.
Then I noticed that he also liked “Dog the Bounty Hunter” Its really funny to see this little baby watch the TV like he has been a fan of these shows forever…..Now of course he likes all TV It doesn’t matter if it “Blues Clues” or “Big Brother “
We have started TIVO’ing Dora the explorer for him we are going to put it DVD in case its not on when he is older…. My nephews love that show.. I am so excited to start watching all the educational shows and cartoons with him Grown up TV is just getting old ..
When did it become ok to say “A$$” and “Bi!ch” on primetime TV not that I am a total prude but jeeze what the heck is up with that…
I thought cartoon network or Boomerang would be OK NOPE the commercials on those stations is enough to make your skin crawl its very disturbing go ahead and check it out, I had no idea it was like that…

The fair

It was HOT I didn’t relieze how hot it was out when we left the house ..Andrew had invited a friend (Mary) we were picking her up and were a hour late as it was ….We stopped at grandma Jessies to feed Rylan after picking up Mary hoping it would cool off a little that didn’t work it was still 101 degrees when we got to the fair ….There were 2 air conditioned buildings and thats where me and Rylan hung out for about 3 hours LOL….
In one of the buildings was the arts and crafts / master gardeners and the other building was the fruits and vegetables….. Randy and the kids hung out for a while to cool off from our walk to get to the fair from where we parked, then went out to go on rides well Andrew and Mary rode the ride and Randy just made sure they didn’t get lost.
Finally it started cooling down about 6:30 and the kids were hungry we got some food and went to the grass area in the shade to eat and met up with Grandma Mary, Grandpa John, James, Anita, Bobby, Joseph, Little Billy,Skyler,Ariel and Emily The kids watched the magic show and then we went to walk around the rides…
Rylan loved the lights and watching all the people we put him in his carry pouch so he could see what was going on ….we stayed till 10:30 and didn’t get home till midnight by the time we took Mary home and stopped by burger king..
Andrew had a blast I am so glad that we decided to go He was supposed to go on Thursday with some of his other friends but he was still at his grandmas since Rylan was just getting out of the hospital..
I felt so bad for him. He has missed so much fun stuff in the last 2 ½ years We all have and we needed to get out and enjoy ourselves ..
We all ended up sleeping in till 9 am Sunday.. So we didn’t get baptized we were just too wiped out… So we plan on getting baptized next time they do it …..

My son is a tough guy

He didn’t cry at all for the catheter He acted like he might when his doc had to push on his bladder a little to get some pee But I talked him through it and he did fine …Thank You God…… I think Rylan had his Angel brother and sisters holding his hands too…They tested his urine and it was all clear from any bacteria so now he has the VCUG test next Monday That is a test where they fill his bladder with dye the do a ultrasound to see if the urine is backing up into his kidneys. This is graded from 1 to 5 with 5 being the worst and needing surgery and a 1-3 is something he would probably outgrow ….

He now weighs whooping 14 lbs 11oz ….

catheter

Rylan has a doctors appointment today he is getting a catheter to see if the infection is clearing up please keep him in your prayers…I just hate that he has to have it done…he is such a happy baby it seems so cruel to do it to him …My heart is so sad for him…

Who Gets in Your Bucket?

Who Gets in Your Bucket?
By Doug Manning
Oklahoma City, Oklahoma
The best way I know to picture how we receive help from others in grief, is to imagine you are holding a bucket. The size and color doesn't matter. The bucket represents the feelings bottled up inside of you when you are in pain. If you have suffered a loss, hold the bucket and think through how you feel right now. If you are reading this to learn more about helping others, then imagine what would be in your bucket if a loved one had died very recently. What is in your bucket?

Fear. Will I survive? What will happen to me now? Who will care for me? Who will be with me when I need someone near? Most likely your bucket is almost full just from the fear. But there is also:

Pain. It is amazing how much physical pain there is in grief. Your chest hurts, and you can't breathe. Sometimes the pain is so intense your body refuses to even move. There is enough pain to fill the bucket all by itself.

Sorrow. There is devastating sadness; overwhelming sorrow. A gaping hole has been bitten out of your heart and it bleeds inside your very soul. You cry buckets of tears and then cry some more.

Loneliness. There is no lonely like that felt when you are in a room full of people and totally alone at the same time. Loneliness alone can fill any bucket ever made.

I could go on, but that's enough to get the idea across, and hopefully get you started thinking through your own list. What is in your bucket?

Now picture someone like me approaching you and your bucket. I also have a bucket. My bucket is full of explanations. I am armed and ready to explain why your loved one had to die, how they are now better off and how you should feel.

I am also well equipped with new ways to look at your loss. In politics they call that "spin doctoring," but most human beings seem to know this skill by instinct.

I have almost a bucketful of comforting words and encouraging sayings. I can also quote vast amounts of scriptures. I seem to favor the ones that tell you not to grieve.

So we face each other armed with full buckets. The problem is, I don't want to get into your bucket. Yours is scary. If I get in there, you might start crying and I may not be able to make you stop. You might ask me something I could not answer. There is too much intimacy in your bucket. I want to stand at a safe distance and pour what is in my bucket into yours. I want the things in my bucket to wash over your pain like some magic salve to take away your pain and dry your tears. I have this vision of my words being like cool water to a dry tongue. Soothing and curing as it flows.

But your bucket is full. There is no room for anything that is in my bucket. Your needs are calling so loudly there is no way you could hear anything I say. Your pain is far too intense to be cooled by any verbal salve, no matter how profound.

The only way I can help you is to get into your bucket, to try to feel your pain, to accept your feelings as they are and make every effort to understand. I cannot really know how you feel. I cannot actually understand your pain or how your mind is working under the stress, but I can stand with you through the journey. I can allow you to feel what you feel and learn to be comfortable doing so. That is called, "Getting into your bucket."

I was speaking on guilt and anger in grief to a conference of grieving parents. I asked the group what they felt guilty about. I will never forget one mother who said, "All the way to the hospital, my son begged me to turn back. He did not want the transplant. He was afraid. I would not turn back, and he died."

I asked her how many times someone had told her that her son would have died anyway. She said, "Hundreds." When I asked her if that had helped her in any way she said, "No."

I asked her how many times she had been told that she was acting out of love and doing the right thing, she gave the same two responses. Many times and, no, it did not help."

I asked her how many times she had been told that God had taken her son for some reason, and she gave the same responses- "many" and "no help."

I asked how many times someone had told her that it had been four years since her son's death and that it was time to "Put that behind you and get on with your life."
This time she responded with great anger that she had heard that from many wellmeaning people, including family members, and that it not only did not help, it added to her pain and made her angry.

What I was really asking her is, "How many people have tried to pour their buckets into yours?"
I then said, "Would it help if I hugged you and said `that must really hurt'?"
She said, "That would help a great deal. That would really help."
Why would that help? Because I was offering to get into her bucket with her and to be in her pain, instead of trying salve over her pain with words and explanations.

If you are in pain, find someone who will get into your bucket. Most of the time these folks are found in grief groups or among friends who have been there. It is not normal procedure. It is hard to swallow our fears and climb into your bucket.

If you are reading this to find ways to help others in grief, then lay aside your explanations and your words of comfort. Forget all of the instructions and directions you think will help and learn to say, "That must really hurt." I think that is the most healing combination of words in the English language. They really mean, "May I feel along with you as you walk through your pain?" "May I get into your bucket?"

Healing happens in their buckets. ` .

First days home

First days home
Why does it never fail when something like this happens its not when the laundry is caught up and the house is all sparkly clean to top it off all you have had to eat for the day is one piece of toast… Thank goodness it was the weekend and Randy had the dishes done so at least there wasn’t a counter full of them to come home to too…
Before we left I had taken some hamburger out of the freezer to bar-b-q I had just about had it thawed in the microwave and had unwrapped it and put it in a bowl to thaw the rest of the way ….When the docs office called and said we needed to come right in ..I put the hamburger in the fridge but forgot the wrapper was in the trash ughhh……… It was a stinky house we came home yuck ….
I spend Thursday and Friday getting the laundry caught up and today we are going to the fair as long as its not to hot out then tomorrow we are getting baptized…

Gave Rylan a bath yesterday I am only giving him soapless baths from now on I guess….. They can cause UTIs…Maybe when he gets a little bigger we can take him in the shower with one of us soaping his arms and legs and washing his hair and one of us holding him ..I am not really sure what we are going to do though I know it won’t be baths with any kind of soap in it I hope I don’t have to fight some kind of stink battle I am taking any and all suggestions …

Rylan doesn’t mind his medicine at all ..I have been giving him mylacon gas drops off and on since he was born so he is kind of used to swallowing meds but that was just a few drops ¾ teaspoon is a lot to give to a little baby that really hasn’t figured out very well it takes about 15 minutes to give it to him I think I am going to time it tonight..
Unless I find the nifty little medicine bottle with a nipple my mom got gor us when I was still pregnant I am not even sure if he will suck on it he really dosen’t like his paci that much either ….

It felt soo go to wake up in my bed this morning

Looks like I will be posting this in the morning Andrews on the phone and I am heading to bed

It felt soo go to wake up in my bed this morning I feel about a million time better that I have felt in 5 days …..
Those hospital beds may look comfortable but they are not I did have it better than Randy though he slept on the window bench seat not much cushion and very narrow I’m not sure if its in any of the pictures but it didn’t look like to much fun to sleep on and he has slept on it every time we are in the hospital.. I woke up on Thursday morning and my first thought was why does he always sleep there The first night Rylan slept with me in the hospital bed the second night Randy took him for a walk in the stroller and I fell asleep while they were gone Rylan slept in his car seat in the stroller…. It was so sweet to wake up in the middle of the night and see my baby right by the side of my bed (Randy had parked him right by my bed) The third night (Wednesday) I swaddled Rylan and put him in the crib to sleep I was so tired that I didn’t feel comfortable with him sleeping with me again I though he would put up a bit of a fuss but soon as we swaddled him he started smiling and when we put him in the crib he went right to sleep ..Yep my baby boy is that perfect I ended up having to wake him up to eat at about 4 am …..

The days were so long and we just dreaded Rylans shots every night we would just watch the clock waiting for 8 pm so he could get his shots over with Now we are dreading Tuesday when he has to get a catheter done for a urine sample…. It sucks..

On a better note we picked up the pictures we had done we didn’t buy any packages because they weren’t any that were better than our $14.95 here’s what we looked like 2 weeks ago

August 4th 2006

Dedication Sunday

Dedication Sunday
The dedication was really nice Pastor Phil did a great job .. he held Rylan for most of the dedication and Rylan didn’t fuss at all except for at the end when we were doing a prayer I think he wasn’t sure what was going on because we all had our eyes closed, anyways he just let out a couple of aahhhhhs then calmed right down It was so quiet and quick I don’t think anybody else even noticed...
Pastor talked about how blessed we were with Rylan and how we had lost Wyatt-Tegan and Taylor… Its was really hard not to cry thinking about them and that they should have had a chance to live to… Its a very strange feeling to miss them so badly and yet be sooo happy to have Rylan.. I don’t think there are words to describe the feeling..Its just hard…….
Rylans little friend (J) born on the same day as him had his dedication to….. Its really funny that they were born on the same day from our church me and Joanna are the only childbearing age women for our little church of about 20 people So to get pregnant and have our babies on the same day is well funny…..

We had a potluck after the dedication all my brothers came, my mom and her hubby, Randys mom and her hubby and my Grandmother it was fun to eat and visit with everyone Rylan was a little fussy but not to much, nobody could of known he would of ended up in the hospital so sick the next day ….

Talking about Rylan

Talking about Wyatt Tegan and Taylor


Later that evening Rylan grunted a few times and we thought he was trying to poo but we now realize it was hurting him to go pee …..
When I was getting him ready for church in the morning I had him all dressed in a pretty light blue outfit set him in his bouncy seat in my bathroom while I took my shower and when I was getting dressed he was farting and pooping I took him into his room to change his diaper and he messed up his clothes so I found him another outfit …I started to change him and was out of wipes so I was yelling for Andrew to grab me the pack of wipes in the living room and Rylan peed on me what a crazy morning anyways I got him cleaned up and ready to go …We won’t mention that he also spit up on his second outfit not to bad though so he wore it…
Ok back to the evening I had also changed Rylans clothes and he was acting like he was being poked or something on his belly so we took him in to change his clothes and see if one of the little plastic price tag thingies was left in or something we didn’t see anything on the outfit but changed him anyways….One other thing that I had noticed for a few days but didn’t realizes what it was was that he was dribbling pee I thought it was odd but just thought I was getting him at the tail end of going peepee every time I changed his diaper …we took picture of Rylan on daddy shoulders and then it was time to get him ready for bed he went down just like every night no fussing or anything for me to know he was sick……

Backtracking

Backtracking 8-18-06

WOW its already almost Saturday again what a week Ok I wanted to share pictures from the dance we went to on last Saturday ….Mindi came and stayed and we had a really nice visit….The weather was beautiful and there wasn’t a gazillion mosquitoes around, strange beings how we were right near a big pond and the river ..
We stayed till 9:30 it was getting pretty dark and that was past Rylan and my bedtime He wasn’t acting sick or anything but I was just tired….
We kept him in the stroller most of the time to keep people from touching him…(Its weird I am so OCD about germs and making sure I wash his hands after a stranger touches him which I try to prevent but can’t always do without being rude.. I stay on top of all poopy and peepee diapers and he still gets sick I think people think I am a little overboard and overprotective but when you have seen what I have seen my kids go through you don’t want to take chances with anything but somehow it never seems to matter its so frustrating )
Andrew is very happy that we got on the mailing list and can hopefully get involved with more activity with the group…

Me and the kids




Randy and the kids



Muscle boy

Pics from Rylans hospital stay

Looking out the window with daddy



Rylan in the big bed / Flowers from Grandma Mary



Getting his ultrasound






A happy baby

We are home from the hospital

We are home !!!!!!!! Will update more later and add pictures.... Rylan is feeling much better ....But will need more tests and antibiotics for the next six months he has a enlarged left kidney we are not sure what that means..... Will be looking it up on the internet myself..........The doctor called what he had Acute pyelonephritis not sure how this fits with the enlarged kidney as in what came first.. Will write more later need to go do some research........

Rylan in the hospital :-(

I wrote this post on microsoft word while still at the hospital yesterday to save me soem time updating when we came home ..

Rylan is sick
Sunday night after the dedication Rylan woke up sick with a temperature of 100.2 We gave him some Tylenol and put him back to bed…At 6:30 am he woke up and I got up to feed him and he didn’t feel too warm to me and he was just going back to sleep and not wanting to eat so I put him back in his bed but he didn’t want to sleep there and made some grunting nnnnnnn…… sound so I got him up and went to change his diaper he was acting like he was having some pain I took his temp and it was 99.6 (I took all his temps under the arm)I decide to give him some Tylenol and we went into the living room
I tried nursing him some more he just wanted to nap so I held him and let him nap, at about 8 am I took his temp again and it was 100.9 I thought that was really weird and decided to call the doc soon as they opened at 9 am I got a appointment for 11:00am We were late because for some reason I was thinking the appointment was for 11:15 so we had to wait in the waiting room till 12:00 finally we got in and the nurse took his temp and it was 102.something under his arm and 103.something in his bottom …
He was due for his Tylenol at 11:30 am but they didn’t want me to give it till the doctor came in…….. Well she (not my doc, we’ll call her NP doctor ((nurse practionar)) gave some Tylenol to him right away and checked him out, everything on him looked great his ears, throat, lungs heart , but he was clearly not feeling well
She sent us across the hall for blood work and that was a nightmare….. The blood draw girl tried to get blood from the inside of his elbow and was digging around in the there after few minutes I told her to stop and that I wanted to go to the hospital and get his blood drawn there where they probably had more experience with babies she said one of the nurses from the docs across the hall has lots of experience she went to get her but she wasn’t there…….
One of the doctors said he was good at it so we were given the option of letting him try we weighed it and decided to let him try ** That was a mistake If you ever have to get babies blood drawn go to the hospital ** he tried in Rylans wrist for a few minutes and nothing so Randy said stop that’s enough so the doctor stopped in between all these blood draws I was able to hold and comfort Rylan and would just get him settled down and they would try again ……..It was so awful my poor baby should not of been put through all this I will never be using that lab again I should of known better ……….The doctor (by the way not our regular doctor our doc was gone We’ll call him “blood draw doctor”) asked if we would let him try again, He was sure he could get the blood if he just had one more chance so we said ok he was digging in there worse that the first time Randy told him to stop again.. Rylan had had enough and he needed a break we were all in tears ……..At some point in all this Rylan got his finger poked so they could do a CBC we finally headed back home about 2:30 Rylan had a pee bag on and we were supposed to bring it back in soon as he peed..
We got back home and waited for him to pee…After all we have been through the thought of something being wrong with Rylan was just horrible

Finally Rylan started grunting and Randy said I think something is happening and sure enough Rylan peed it was about 4 pm The pee was very very cloudy and I was thinking oh this is good its just a urinary track infection I had no idea they are so dangerous in little babies…
Randy left to take the pee in and the NPdoctor called while he was gone To let us know that his CBC blood work was looking fine and Rylan probably just had a virus but since his temp was so high that he should be seen in the morning she also said he was a bit anemic **We later learned that all babies are anemic at this age and its normal at least that’s what “blood draw doctor” said*** I let her know that Randy had just left to bring in the pee sample and told her it was really cloudy she said it could still be nothing and she would call back soon as they got the results from the pee and transfer me to make the appointment the appointment was for 10:40 am…

I talked to Randy and told him Rylan was anemic so he went to wal-mart to pick up some vitamins for me.. We thought Rylan might be anemic because of me almost bleeding to death after I had him and maybe it was affecting my breast milk ……..

Randy then came home and then about a half an hour to a hour later the N.P. doctor called she said yes it was a UTI and I was getting ready to say thank Goodness but before I could get it out she says “You need to come back to the office right NOW this was very serious and they would be admitting Rylan to the hospital…

OMG it was so scary so we rushed right back to the doctors office and blood draw doc tried to get a cathader to get a better urine sample to cultureof course he couldn’t get any pee out he used a little syringe to try to suck the pee out No luck so he taped it on as best he could and sent us over to the hospital to get checked in ……..
The nurse tried to get a IV started but had no luck (we had her put numbing cream on 20 minutes before but it didn’t help much he still screamed )She wanted to try his foot we said he has to have the numbing cream first they were not real pleased about that but agreed so they put the cream on and sent us to our room ..We found out that he was only going to be getting the antibiotics foor 3 days every 24 hours he gets 2 shots but the nurses each do one leg and give the shots at the same time …We decied he had been poked enough with no success that we didin’t want him to get the IV unless he was dehydrated or some thing …They are mixinbg the antibiotic with lydocain so it dosen’t hurt as bad he cried for about a half an hour the first night and onlt about 5 minutes if even that the second night and he hasn’t had the shot yet tonight………
He is feeling better and had an ultrasound we are waiting for the results of that and the bloodwork and urine culture …….

No Swaddling night 1 not a success

No Swaddling night 1 not a success
Dressed Rylan in a long sleeve jamma outfit and put Rylan to bed as usual at 8pm he laid there happily looking at his birdie on the ceiling movie for 15 minutes then when it was over just laid quietly in the dark for about 20 minutes then started making noise he doesn’t cry till he is really mad until then he just goes aaaa…..aaaa….aaaaa not really sure how to spell what he says but its not a cry …….. Daddy went in to try the paci, no luck ……..So out of bed with Rylan and into his short sleeve onesie, long pants and socks Then onto the boob he fell asleep in about 10 minutes I swaddled him up and off to sleep he went within 2 minutes at about 9:30 pm LOL he slept till 4:30am when I woke him up to feed him, back to bed at 5 am and he is still sleeping now (its 7:10 am ) I thought he was waking up at 6:45 am so here I sit waiting for him to get up… Darn if I knew he was going to stay asleep I would of stayed in bed …

Tonight we are going to a dance with Andrew downtown put on by a group here in town called people first it the dance we bought the Hawwian shirt for….

Last night we all walked to the mail box to get the mail I put Rylan in the front carry pouch he really liked riding in it …We took this picture in the bahtroom mirror of us before we left and of course didn’t take any picture on our way…..Do you like my haircut ???