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.

Weston Day 11 update

Today has been the best day yet!  Weston gained 45 grams last night and another 30 tonight.  He's up to 5 lb, 15.3 oz, just shy of 6 lbs!  3 more ounces and he's back to his birth weight!  That's one of the goals, not a major one, just to get close to it.  Surpassing it would be awesome!  Last night, Troy and Rylee stayed with Grandma and Grandpa Klauer.  I took them down to the hospital at 2:15 yesterday afternoon so they could peek in the window to see Mr. Weston.  Troy waved but wasn't too interested.  It was dark and daddy was holding him, they couldn't really see him.  Then Daddy and I switched places, he took the "big" kids and I took over with Weston.  He delivered them to Grandma, while I tried to nurse that little dude.  He did alright.  I believe he took 10 cc at one of the feedings and 6 at another.  They tubed him the rest.  He was a tuckered out little man.  This morning, Kris and I went down to the hospital together for his 7 and 10 am feedings.  I think he took 16 cc at the 7 am feeding.  At the 10 am feeding, we decided to try nursing and see if he was up for it.  He took 12 cc.  The nurse, Shirley, took him out to the scale to weigh him, to see how much he got, and it was like he got a second wind of sorts.  She suggested we try a slow flow bottle feeding for the rest of his 45 cc.  I haven't done this yet, Daddy has a couple of time and had a record of 25 cc.  We bet a soda that I could get him to take more.  Within 5 minutes, he had that 25 cc gone.  He gave me 3 nice, loud burps.  Daddy then bet me another soda that he wouldn't take the rest of the bottle.  Weston proved him wrong.  He slowly but surely finished off that bottle.  Unfortunately, that was the only time I was at the hospital today.  I stayed home with Troy and Rylee the rest of the afternoon and evening.  I did call a little while ago for an update on how he was doing and how his day went.  He took 20 cc, 12 cc and 40 cc from a slow flow bottle.  He also got a bath.  I am sure he's tuckered out now.  I am anxious to see how he does this weekend.  He's full of surprises, that boy.  So it wouldn't surprise me if we go a step or two backwards, we know all too well how this goes with preemies. 

At around noon today, Kris's parents brought the kids down to the hospital.  We are expecting to have to go pick them up so this was a nice surprise.  Daddy ran down and helped switch things over from car to car.  I opened the blinds for the kids to see Weston.  I put him as close to the window as I could, the counter are high and I'm short.  Troy got a little excited for a second but Rylee didn't know what to think about him.  She had a look on her face like "who the hell is that and why is my mommy holding him?" She's pretty much been glued to me all afternoon and evening.  She didn't want to lay in her bed for bedtime so she snuggle against my thigh sawin logs right now. Troy fell asleep at 7:45 on the living room floor.  I think with the lack of a nap and staying overnight last night, he was tired.  I woke him trying to get him into bed.  I told him that he could come and snuggle with me if he wanted.  Nope, he wanted to sleep in his own bed.  I didn't say another word just helped him into bed and tucked him in.

Last Monday, I took a trip to Acute care for a headache and fever.  Today, Kris let me lay down for 45 minutes before he left for work.  I woke again to a fever and chills and headache.  I can't for the life of me get this cotton pickin' headache to go away.  I have teeter tottered between being hot and cold all afternoon and evening.  I just can't seem to find a happy medium.  I would be doing back to "normal" if it weren't for this garbage.  I just hope the antibiotics are working.  They don't feel like it.  Maybe this UTI is why I am so dang tired.  I can't get enough sleep and my poor husband gets less that I do and functions a lot better.

This weekend is my friend Dana's baby shower.  I unfortunately don't think that I am going to be able to make it.  I think that my time needs to be at the NICU and my focus on helping him come home.  Last month, Rylee and I went to my friend Carolyn's baby shower.  Little did we know then that the belly pictures that were taken would be the only ones we get.  Carolyn's baby, Isaac, was born this week and Weston last week.  I the span of a month, I knew very well that there would be 4 babies born.  So far, my sister had her baby, I had Weston the following week and Carolyn had hers the 3rd week and they have all been boys and decided to come in a hurry.  SO, is Baby Donar coming next week?  Is Baby Donar a boy too?  Or a girl?  Those are the questions and many people are anxious to find out.  Either way, Weston will have 2 "buddies" at our family Christmases and outings.  I am excited for all 3 of them!  And I am excited for people to meet Weston.  So far, he has "met" Aunt Carmen and Jalyn and Scott and Aubrey (through the window), Grandma and Grandpa Klauer a couple of times, and Grandpa Harley and Deb.  He has so many people left to meet who will greatly impact his life...Aunt Erin, Uncle Craig, Great-Grandma Dodds....this list could go on forever!  Ok, I am done babbling now, I am trying to stay awake to pump for Weston.  Have a good night all.  Cross your fingers, your toes, anything and pray to the highest of heavens for the feedings to get better and better so we can bring our bundle home!

Another Day 9 update!

Weston is officially 9 days old now, 9:57 pm.  I went down to do his 7 pm feeding tonight.  He woke when I got there.  He nursed for a good 35 to 40 minutes before starting to fall asleep.  He took exactly 14 cc again.  Consistency is great!  14 in the morning, 14 at night.  I think that feeding light bulb might be coming on, slowly but surely.  He did spit up a bit after the rest of his tube feeding but no one seemed concerned.  There's a new inmate in the NICU tonight too.  His name is William and he shares the exact same birth weight and head circumference as Weston but is half an inch shorter.  He joins Weston in the corner.  He is actually in Weston's "old" bed.  Weston is kind of shoved into tight quarters.  I have a feeling though, that William won't be there long.  He was a c-section baby and I think had some gunk in his chest.  Lyla is the only girl in the NICU.  She was born 4 days before Weston and weighed 3 lbs, 11 oz.  Her parents are super annoying.  Everything that comes out of her mom's mouth is about Daddy.  Don't get me wrong, I love my husband but I don't constantly talk about him.  I even heard one of the nurses say they creeped her out a bit.  I wouldn't say they creep me out but definitely are annoying, even Kristopher thinks so and that stuff never bothers him!  Marcos is a little boy, I know nothing about except that his name is Marcos and his dad is Diego and he's got the most annoying, loud cry.  Marcos gets to break out of the joint tomorrow.  His parents are super young, maybe 17ish.  His mom has been scolded a few times for a few things a couple of the times that I have been there.  She fails to wash her hands everytime she comes in.  I thought that was kind of an automatic thing!  And, she has broken the #1 rule numerous times I have been there, falling asleep while holding Marcos or nursing him.  She snores rather loud, so the nurses jump on her every time they hear her.  Sad!  And they're taking him home tomorrow on monitors and such!  OH boy.  It was a hoppin' joint there tonight at 8 o'clock.  William's dad had just left, and Marcos and Lyla's parents had just came.  I headed out about that time to go back to my sister's and rescue her from my kids! HA!  If they're brains aren't still thumpin' from all the screamin', I'd be very surprised.  They had a ball though.  Both crashed right after we got home.  It's been quiet and peaceful for the last 20 minutes.  Tomorrow, they are going to go to Kris's parent's house, I think.  SO, I think I am going to go to the hospital for my usual 7 am feeding, then come home and spend the rest of the morning with them.  I am sure Kris will go down for the 1 pm feeding and I may bring them down right before he needs to leave to go to work.  I asked Troy if he wanted to see Baby Weston tomorrow and he said YES!  When we pulled in the driveway and I turned off the car, he said lets see Baby Weston (Troy's pronouncation WE-ton).  He can only look through a window and it's been a week since he has done that so it's due time.  Hopefully we can bring him home within the next week and he'll actually be real to Troy and Rylee. 

Weston day 9

Weston has started gaining weight.  Saturday, he gained 2 oz (60 g) putting him at 5 lb, 7.1 oz.  Sunday, he gained 39 g which is about 1.3 oz putting him up to 5 lb, 8.4 oz.  Monday, he gained a whooping 3 oz (95 g) putting him at a weight of 5 lb, 11 oz.  At least the weight is starting to come on.  He is primarily taking his feeds by feeding tube.  Anything he doesn't take by mouth is fortified with Neosure 22 k/cal to help with adding some calories.  His feedings are 50-55 cc 8 times a day consistently at 1, 4, 7 and 10 around the clock.  I went down this morning and tried to breastfeed him.  He was awake and alert.  He transferred 14 cc on his own.  That's wonderful!  I asked the doctor about trying bottles today.  He gave us the go ahead to try them.  Kristopher went down to do the 1 pm feeding and try the bottle out.  He only took 20 cc of his 55 but some is better than none.  Kris said he was just way way too sleepy.  I am going down for his 7 pm feeding and praying, rather pleading with God, that he takes 14 cc or better from me.  Once he figures out that he has to actually take all the feeds by mouth than I don't think it will be long before he is home.  FINGERS CROSSED!  At this point, I'd do anything to have him home!

We've been relying on family to watch the other kids so that I can be with Weston in the evenings.  Last night was Kristopher's first night back to work.  On Monday, I came home from the hospital around noon and decided to lay down for a nap.  Kristopher woke me a couple of hours later to a migraine and high fever.  I called the doctor's office who instructed me to go to Acute Care.  So Kristopher stayed home and took me while my sister came over to watch our kids.  Turns out it's a UTI, no biggie!  Got some antibiotics to kick this out of my system and should be good as new in a couple of days.  The antibiotics are perfectly fine to take while breastfeeding and I was able to go to the NICU.  We already at the hospital and it was close to 7 by the time we got out, so we went up to the NICU together and did the 7 feeding.  Last night, my dad and Deb watched the kids so I could go down.  Tonight, my sister is going to watch them again (bless her heart, she was rather entertained by them on Monday).  Tomorrow, I believe they get to spend a night with Grandma Klauer.   Thank goodness for Family!

Rylee got her braces on Monday.  Today is day 3 so we are up to 3 hours to wear them.  She can wear them while awake and active.  We are to add 1 hour per day to the time that she wears them to avoid discomfort and pressure sores.  They're tiny!  The one down fall is that she has to wear socks with them and we sure aren't in sock wearing weather.

I want to wish my friend Carolyn and her husband Hans a congratulations on their new arrival, Isaac, this morning.  It's a baby a week around here I guess!

Identical brothers!!

Kris took a picture of Weston when he was visiting him this afternoon.  It reminded me alot of a photo I took of Troy at almost the same age.

This is Troy at 4 days old

This is Weston at 6 days old

Amazing right?

Weston's Day 5 and 6 update

Weston is doing rather well.  Today, they removed the billi lights.  Tomorrow, they'll remove his monitors.  Then he's considered a "newborn" status.  Really the only thing left is getting him to take all his feedings by mouth.  And gain some darn weight!  Weight is a constant issue around here.  I believe that maybe tomorrow he'll be moved to a "crib".  As I was leaving this morning, the nurse put an outfit on him and turned the temperature in his isolette down.  More calories are burned in a crib because he has to regulate his own body temperature but they are also fortifying his feeding that he takes either by feeding tube or finger feeding.  I have gotten to put  him to breast now everytime I go.  That's a new experience for me but he's pretty good at it.  The first time he took his entire feeding.  Now the last couple of times, he hasn't taken much.  Kristopher left a little while ago to go to see him and do his 1 pm feeding.  Things are going to start getting tricky tomorrow when Kris has to go back to work.  My time there will be shortened greatly.  There will no longer be evening visits.  It doesn't sound like he'll be home very soon.  I am having a hard time with this.  I just want him home.  I went through this with Rylee too but I am much more impatient this go around. 

Weston Day 3 and 4 update

Weston is coming right along.  Yesterday morning labs were draw to check his billi levels.  They were 9.5 but yesterday morning's labs showed a jump to 15.6 so he got to bake under some lights all day yesterday.  Today's lab showed a 14.2! So he's down and should keep going that way for the next couple of days.  Tuesday night his weight was down 1.5 ounces to 6 lb, 1.5 oz, Wednesday night it was down another 7 oz to 5 lb 10.5 oz and last night he was down 3 more oz to 5  lb 7.5 oz.  Dr H didn't seemed to concerned about it today.  Weston's iv expired and was pulled this morning so Dr. H decided for right now to leave it out and increase the volume of his feeds.  I fed him his 7 am feeding of 20cc that he took like a champ!  So far he hasn't had any residuals.  His urine output is wonderful and his stools are transitioning right now. Kris and I took the kids over to my dad's last night so we could spend time with him together.  We tag teamed on a feeding.  When we were driving to my dad's house, Rylee threw up all over herself in the car.  She had been pretty fussy all day and has some terrible diaper rash on her bottom.  I am not really sure what is going on.  Kris and I decided to see how it goes today.  At my dad's last night, she played, smiled and scooted all around.  Deb went out and got her some clothes and baby bath and bathed her in the sink, which she loved.  Troy has learned how to say "grandma", probably since he's been with his Grandma Klauer so much in the past couple weeks.  So he now calls Deb and Deb's mom, Doris, Grandma.  In less than a month, she will be marrying Grandpa so that makes her Grandma too.  In the couple of hours that we were gone, they sure had a blast. 

Today, when Dr. H did his rounds, he mentioned a few things that need to be done a couple of days before we can bring him home.  Then said we would do those things in a couple of days.  Ideally, we bring Weston home on Monday or Tuesday of next week!  I think I can handle that.  After seeing him, holding him, smelling him, loving him, I can't wait to have him home.  He just looks so good and is doing so well, I just want him all to myself.  I want to be able to hold him when I want, how I want and not worry about the cords.  I want to have a baby to feed at night instead of waking every couple hours to pump for that baby.  His diapers and clothes are all ready for him, we just need him. I know he will come home eventually I just really want it to be now.

Weston Day 2 update

Today was a great day for Weston.  He got his first feeding today of 4 cc.  We're starting slow to make sure that he can tolerate them.  Kris along with Grandma and Grandpa Klauer got to be there for the second feeding of 5 cc.  This was also Kristopher's first time holding Weston.  Everytime I went to visit him I have got to hold so this was pretty special for him.  I was discharged at around 1 today.  I had different feelings on being discharged to go home.  On one hand, I was excited to go home but on the other, I didn't want to leave the hospital without Weston.  I have had to do this before and it was definitely not any easier this time around.  It's awful and I don't wish it on anyone.  I will only be 25 minutes from him whereas I was 2 hours from Rylee.  I get to go see him everyday and spend as much time as needed him.  Kris and the kids had to wait until I was discharged because they were my way home, kind of.  I drove myself to the clinic on Monday and left there in an ambulance so Kris's car was still parked at the clinic.  I was surprised it wasn't towed.  We still had a bunch of things that needed to be done before Weston came home like getting him diapers and a mattress.  The first place we went was good ol' Walmart.  We got Weston's mattress and diapers as well as a bunch of groceries for at home.  Then we headed over to the clinic to get Kristopher's car and headed home.  It was nice to be home.  Troy, Rylee and I napped, I showered, we made dinner that the hospital sent home with us and then I headed back to the NICU to be with Weston.  I really hadn't spent much time with him today so I needed some mommy and Weston time.  Right after I got there it was time for him to eat.  Earlier in the day, the nurse placed a feeding tube down his nose to his tummy because he didn't seem to care about eating much.  However, the night nurse decided that we should let him try taking his feeding from a syringe.  He wanted the pacifier and was sucking well on it right before the feeding.  He took the entire 10 cc in a matter of minutes.  He didn't let any dribble from his mouth and when finished he gave 2 big burps.  I got to feed him tonight and burp him.  Then we just cuddled for a while before he started to feel a little chilly.  His heart rates were great all day with only 1 brady spell.  His breathing is a night and day difference from yesterday.  He's a little yellowish so tomorrow they draw another billi count to see if he needs some photo therapy.  I can't wait until he is home with us especially after cuddling with him tonight and seeing how well he is doing.  Tomorrow I plan on being at the NICU by 7 am which is his feeding time and hoping to be there when the doctor does his rounds.  I am anxious to see what he has to say and if he has any ideas on a time frame of Weston's stay.  I am praying hard for him.  He's figured out the breathing business now if we can get the feeding part figured out, which he's well on his way, then I don't think that it will be long.  Amen for that!

BIG SURPRISE!!

Before I get to the big surprise, I wanna give you all an update on Rylee.  We came home Saturday and all was fine.  Sunday, she had a hard time keeping much down.  Kris and I both think that it was the taste of the tylenol we got.  It was cherry and she only vomited while being given that.  The ibuprofen seemed to go fine.  However, since she had vomited a few times, I decided to have her checked out at Medical Associates yesterday.  She was down 1 and half ounces from Saturday.  We had to take her out to the hospital to get a blood draw (apparently it takes to long to have it done at the clinic so they send their patients in urgent need to the hospital to get the results within an hour) to check her white blood count and hemoglobin level.  White blood cell count was a little elevated and hemoglobin was fine.  They think she may have something viral but don't know for sure.  I was told that if the vomiting started again or she developed a fever than I needed to bring her right back.  So far so good, I think.

Ok...are you ready for the Big Surprise????  It's this...

Introducing Weston Robert Klauer!  He's absolutely precious.  It's been a crazy week around our household and won't be slowing anytime soon obviously. We named him Weston because we liked the name.  His middle name Robert came from each of us having a Grandpa named Robert.  I threw it out there because that was my grandpa's name and though he's no longer with us and I miss him like crazy, I know he's been watching over us and keeping us safe and healthy.  Then Kristopher said, that was his grandpa's name too.  So it worked out both ways.

Weston decided that on Monday he wanted to have a birthday!  I was suppose to go to the doctor last Thursday but with all the running around for Rylee I had to reschedule.  I was rescheduled for Friday and obviously that didn't work out because of Rylee's surgery.  So I was re-rescheduled for Monday at 3:30 pm with Dr. O'Donnell.  Kris, the kids and I took at trip on Sunday to Tomah.  Everyone was feeling happy, well and chipper so we decided it was a good time to meet Mr. Sawyer James and see how everyone was doing there.  On the ride home, Kris had to slam the breaks to avoid hitting the Prius that slammed on his breaks infront of us.  I started having some contractions then.  About half way home, the contractions got a little stronger and more frequent.  By the time we got home, I was not feeling so well so I laid down and they pretty much went away.  Monday morning I got up, showered and went to work.  I took Rylee to the doctor and to the hospital for that CBC.  I was short of breath then and when I got back at work, I was not feeling well at all.  I didn't know if I wanted to throw up or pass out or sit or stand or spit.  I was having contractions but nothing out the normal.  I got in the car to go to the doctor and I honestly have no idea how I drove myself there.  Seriously, I was in quite a bit of pain, contractions on top of each other and still feeling sick to my stomach.  I only hope that I didn't drive someone off the road, drove the speed limit or between the lines.  I was pretty out of it.  I told the nurse about the contractions in which she looked at me with this look like "come on your just under 35 weeks, you're not in labor but whatever".  Dr. O'Donnell came in and measured, right at 34 weeks.  Then she checked me.  I was a 3 and 90%.  Since I drove myself to the clinic and was in active labor, she decided that ambulance was the way to go to the hospital.  I got wheeled out through Medical Associates Clinic West Campus (OB is on the second floor) on a stretcher.  They held the elevator for me and all!  The nice paramedic told me that because the traffic that we were going to go lights and sirens to the hospital.  He kept asking me to tell him when a contraction stopped or started, the problem at the point was that I had no idea if they were stopping.  It was probably a less than 10 minutes ride and we flew through the ER right up to L&D.  Dr. Berger, my primary doctor, met us in the hall and checked me right when we came in.  I was a 5 and 90% with a bulging bag of water.  He let me get an epidural first then broke my water to get the show on the road and because it was bulging!  Honestly, a dam broke when he opened that bag.  He said it was the second largest rupture he's ever seen!  It was wild.  Kristopher came right before that, thank goodness.  Once I got that epidural, I relaxed as well as baby.   So instead of baby coming at 6 like Dr. B predicted, he took his sweet little time.  It turned out that he was face up instead of face down.  Dr. B tried to turn him, but he didn't wanna turn around.  After I was complete, Dr. B did manage to turn him.  He was born at 9:57 pm.  He was born 5 weeks, 2 days early but was rather large!  Dr. B predicted girl at 5 lbs 4 oz.  I thought boy as well as Kris.  He was 6 lb, 3 oz and 19.5 inches long.  There are full term babies who are smaller than him.  I can't even imagine what another 37 days in there would have produced!  I didn't have any problems.  Dr. B suctioned him and he let out some good loud bellars.  He started grunting when he was breathing and because he was born before 36 he was taken to the NICU, after I got to hold him for a minute or two.  He is still in the NICU.  He's been having some problems with his breathing however, remains on room air and hasn't dipped below 90% for his O2.  I get to go home tomorrow but he's going to have to stay.  I am not really all that ready yet.  We have to put a crib together, get a crib mattress, get diapers and some clothes to fit him right now, wash the other boy clothes, wash his crib bedding, I need to get a pump to use while he's here and once I go back to work.  There's a list.  I wanted to get some meals put together in the freezer so I'd like to do that too.  It'll be a bunch of shopping, wash, cooking and dishes tomorrow I am afraid.  As well as running back and forth to dubuque!  He's certainly precious.  And resembles his big brother an awful lot!  His hair is thick and blond.  He has a LOT of bruising on his face, legs, arms and bottom of his feet (that's from constantly kicking me the ribs).  The nurse in the NICU said that she would guess that by Thursday he'll be under some billi lights for jaundice.  I didn't expect to have a baby yesterday when I went to the doctor!  Mr. Weston has been a surprise from the beginning and hasn't let us down yet.  Enjoy some photos!

 

 Rylee at my friend's baby shower a couple weeks ago

Troy wearing Rylee's first birthday crown...it's a nice smile

 Last picture of her beautiful head of hair, though they didn't shave much off

 

 This is a shirt they gave us to have Rylee wear, she swam in the thing!

 

 This was the afternoon after surgery, she was happy and, you can't see it well here, but has bright orange hair

 See the clown hair, it's still tinted orange.

 

 This was the following morning

 

 Her face in this picture cracks me up!  She just had surgery less than 24 hours before and she's got big toothy smiles!

 

 There were guys right outside cleaning the windows right next to out room so we set her up by the window to look at them.

 

 First time meeting mommy

 all settled in the NICU

 

 My big babies and me this afternoon.  They haven't gotten to see Weston yet.  He needed his rest so we didn't even try to have them look in through the window at him and I really don't think either one would understand he was really looking through a window.  We did ask Troy where the baby was and he point at my tummy.  When we said, he's not in there anymore, Troy simply said baby at baby doctor.  He did well when it was time to go and I had to stay but he thought Rylee had to stay too.