Wednesday, October 31, 2007

Trick or Treating...from a kids point of view

As seen from our pictures we all had a great Halloween Night! Our little monkey and monster enjoyed every minute of it!

Kate was in her hay day...she was just smiling...and chewing on every piece of candy she got! We haven't really tried any of the candy besides a sucker..so we're not quite sure how she will handle it! She held her trick or treat bucket on her lap and continually reached in for a new piece of candy! And...she got mad when it was taken away...she got the idea that it was HER candy! She was adorable!

As far as Seth...he had a little bit of a hard time grasping the whole concept of getting candy and then having to give candy away! He was much more into giving the candy out! We trick or treated for about 45 minutes..and then he just loved giving the candy out to the kids who came to our house! He would just watch and get so excited when he saw somebody coming! Guess he lives by: "it's better to give than receive!" Everything is "why" with him and we got a little tired of "why do we trick or treat...why do they give us candy...why are we going here" What is going on in his little brain...I"ll never know!

So overall..a great night for all of us...it was so great to see Kate actually having fun and getting in the spirit of it all!

Lesson learned...a 2 hour nap and 5 pieces of candy don't make for an easy bedtime! But, how can you say no...it's Halloween!

Happy Halloween!

Tuesday, October 30, 2007

All in a Day's Work....

of a mom with a heart kid!

So...here's something I never imagined I would be doing in my lifetime....daily cleaning of over 16 syringes. Yep...Kate has to take her 6 meds at 6 different times during the day...for a total of 15 syringes....plus the syringes to measure her nutritional supplement. Her med schedule is actually a little taxing sometimes..as I often find myself forgetting and trying to figure out how to get in all her meds and get them spaced appropriately. Since she is on several heart meds...we can't give them too close because they can drop her blood pressure too low. However, as taxing as her meds are...I have to give all the credit to Kate! She is such a wonderful med taker and I think I would have lost it by now if I would have to shove meds down her throat 15 times a day! She actually takes out her paci and opens her mouth. I am chicken, and have yet to taste any of them...I am a TERRIBLE liquid med taker...but she takes them all in stride...with just a couple quirky looks after the lasix & Dig. I am so proud of my little girl...the nurses have even told me they have never seen a 1 year old take their meds as well as Kate! The girl won't eat...but she'll take her meds... GO GIRL GO! And...a new low as the other day as I was at Walgreens picking up another refill...they knew me and didn't even have to ask my name! Should have bought stock in Walgreens, I guess!


And...another thing I thought I would never hear out of my 3 year old! Tonight, we took Seth to ice cream for a reward as he actually had a great day at preschool and got a good report from the music teacher...for once he wasn't booted out of music class! We wanted to reinforce his great behavior and he wanted to go to "The Scoop" for icecream. We hooked Kate up to her portable oxygen tank and loaded her in the car. Soon after...Seth told us we had to go fast because Kate only had 2 bars left! I don't know whether to be sad or proud that my 3 year old knows how to read the level setting on an O2 tank. (As the tank runs out of O2...the bars go from 8 to 1). I think I'll chose to be proud..proud that he loves his little sister so much and wants to make sure she has enough O2! Way to go Seth!

Monday, October 29, 2007

Seth news!

Thought I give a quick update as to what Seth has been up to! He had a great few days with all 4 grandparents while we were in Michigan. The first couple days were with Grandma & Pampa...he always stays so busy with them working in their yard! Their house is surrounded by trees...and Seth feels it is his job to pick up each and every stick! Then...back home for a day of school and then a couple days with Nana & Oompa. They went camping at Bear Creek Farms and again...Seth was lovin' being outside and just piddling! I went and picked him up on Saturday and we went swimming at the indoor swimmin' hole at Bear Creek. He was a blast! That kid is completely fearless...he goes down those water slides with absolutely NO fear! It was a great escape for a couple hours.

Today...the excitement came when the leaf crew came to pick up all the leaves. According to Andy (I was at the Dr. w/ Kate) Seth was bound and determined to pick up every leaf in our yard and get it in the pile for the tractors! He is determined.

He continues to make us laugh...with his quirky comments..I've got to start writing them down! He is currently into "The Wiggles" and we are about wiggled out. I also find it interesting that he wants to know what every sign we pass says...perhaps a beginning interest in reading?
Seth and Pampa grabbin' a quick nap before heading to Portland!
Seth dressed up for "What I Want To Be When I Grow Up" day at school! Yep...you guessed it...a recycling man! They don't sell those costumes in the store!

Weekly Weigh-In Woes

Well..we were back to Dr. Jim today and I wasn't too surprised to see that Kate was down 4 ounces to 17lb 6 oz. Not too unexpected due to her heart cath last week...plus the fact that the kid just hates eating.

So...we have the every pressing question...to tube or not to tube feed. There are so many pros and cons about all of our options. Dr. Jim's thought is that "the powers that be" won't want anything done pre-surgery as we don't want to add any risk of infection. But...we obviously don't want her to continuously lose weight. Dr. Jim is calling up to Michigan to talk with the cardiologist to discuss whether a g-tube would be advantageous in the next couple weeks. We all feel that nasal tube feedings are not right for her as it could allow more reflux and messes with your heart rate every time you put it in/take it out. So...we are looking at the different options when it comes to putting a feeding site into her tummy.

It scares me to death...I have always felt lucky that we have dodged that bullet...however right now..it appears as our luck has run out! She just doesn't have an appetite and with her heart failure...we seem to be fighting a losing battle.

So...we hope to get an opinion from the cardiologist in the next couple days...but ultimately, the decision is up to us! It is so hard sometimes to be the decision makers for your child's health...we keep hoping that she will "pick it up" on her own...or even possibly, after surgery, if she is out of failure that she won't burn as many calories. And if that is the case...do you put her through another procedure/surgery in the meantime.

So...prayers for wisdom this week as we make the big decision as to how/when/if concerning her calorie intake. Sometimes...it feels too big of a job. We definitely need some God intervention on this one...a nice big SIGN would be nice about now!

Other frustrations with Kate...her inability/unwillingness to sleep in her own room after any type of hospital stay! We are fighting that battle again right now as she seems to only want to sleep on the floor in the living room!

But overall..Kate is full of joy! She is just the smiliest little thing and coninous to bring us so much joy! She is really making some strides in knowing words and in her ability to manipulate objects (stacking, holding, turning, etc). She has learned the skill of communication, in her own little way! A lot of grunting and pointing....maybe sometime soon I can get that on video!

Saturday, October 27, 2007

I'm SO thirsty!



It was the saddest and cutest thing...we were sitting in the clinic...waiting for her heart cath! She hadn't had anything to drink since 6:30 am and it was getting close to noon! She had her stacking cups...and took each one of them and tried her darnest to get a drink out of them. She is just learning about cups and loves to drink out of them. I felt so bad...she was trying SO hard and was not getting any reward for her hard work.

Friday, October 26, 2007

Back Home Again In Indiana

We were discharged fairly quickly this morning...we were on the road by 10am and home by 1:30 after a stop for lunch and gas. Kate is doing fairly well...pretty much exhausted from all of this.

We have a date for surgery...not our favorite date...but at least we have one. November 27 for surgery and a work-up day the day before! So..we have a month at home...but I'm not too excited about spending the weeks up to and possibly Christmas in the hospital. They say 2-4 weeks...and knowing Kate...she will take the full 4 weeks. They kept trying to console us by telling us that there is "lots" going on those weeks and Kate will get lots of presents! That's nice and all...but still home for the holidays is much more important to me! But...even more...a healthy heart in Kate home after the holidays will be even better! We have more Christmas's and the kids won't remember it...so we'll do the best we can!

So..we have a month...to try and figure things out...get weight on the little girl and keep her healthy.

Seth is camping with Nana and Oompa after staying with Grandma & Pampa a few days! Looks and feels like a great weekend for camping. I will probably go get him tomorrow. I am off to nap...my short night on my short bed did not satisfy my sleeping needs! Love to all and thanks for the prayers...keep them coming...we're not done yet!

Thursday, October 25, 2007

It's Gotta Be Worth It!

They finished with her cath a lot earlier than expected...around 3ish! They did not place a stent within her pulmonary arteries. Although they are smaller than "normal" --he felt they were of decent size and stenting would not make any significant difference. Dr. Ayagari (cardiologist) feels they are capable of withstanding her bloodflow.

However..he did find that her VSD was of moderate-significant size and was causing significant shunting (or blood flow to the wrong area) She usually shunts from left to right...causing extra blood flow to the lungs...hence causing her rapid breathing! Makes sense.

Also...her tricuspid valve needs repaired...as it is causing blood to be backing up into areas

And...her conduit is leaking

His recommendation (after speaking with Dr. Parikh in Indy)....surgery...withing the next couple weeks! WOW! Again..we feel like it is bad news/good news. We hate hate hate putting her through surgery AGAIN...but these things obviously need fixed...the doc says she won't grow and thrive as along as her heart stays as is!

So...Dr. Parikh is referring her to the topnotch, senior surgeon here at UofM. His schedule is obviously full..but he is moving some stuff around in order to get her scheduled in the next couple weeks. So...we're headed back here....prayerfullly to get it all fixed and get her on a rapid road to recovery.

We were able to see Kate around 4...in the Post Anesthesis Care Unit...we were there for about an hour as she woke up from the surgery. She was relatively calm and relaxed. We opted to keep her here overnight, even though they didn't stent, just because we really didn't want to make the drive home right after such a procedure. We moved up to 5East..which is just for cardiac kids.

We were taken back at first because we soon realized they don't have private rooms and Kate had a roommate...a sweet little girl about Kate's age. And....we were a little concerned...giving her immune deficiency...and questioned the rooming situation. The nurse came back a few minutes later and told us we lucked out because there was an "isolation" room available. So...we got our own room....as long as a contagious kid doesn't come into the unit. However...we have since learned that none of their rooms, including the ICU are private...so we are going to have to get used to "living with others" It's scary..as you never know what other people are carrying around..but still..maybe it's a chance to connect with some other families.

So..Kate and I are hanging out here in our room. The sleeping bed is much to be desired...it's only about 3 feet long...evidently if you are in isolation...mommies aren't usually bunking with their kids! So..Andy got a hotel room and I will try my best to sleep....probably mostly on the car ride home tomorrow.

Kate has been awake..sitting up and playing. She took 4 oz of juice around 6ish and kept it all down...she then gulped 5 oz of milk at 8 and proceeded to spit up about 2 oz. Probably just too much...to soon...too fast! She is just a hungry hungry girl.

We are hoping to have the surgery date by the time we leave tomorrow...if not...we should hear from them on Monday! I am just so ready to get all of this over and done with! But..I really feel we are in the right place right now...and that she has a great chance of getting over this! We dearly miss our St. V friends...but...we know this is the right decision..for us right now!

So...we're sure to experience a few inconveniences: getting lost in a huge huge complex....paying for parking...no free meals...roommates....new faces....not being home w/ Seth....bad nights of sleep... But...our sweet sweet little Kate is so worth it...it's amazing what you end up doing...just to give your kid a fighting chance at life!

Adjustments!

Kate is in her heart cath right now! I took her back to the OR around 11:45 and she was "knocked out" around noon! We just got word about 20 minutes ago that all lines were in, she was stable and they were starting to get the images. They are going to try and put a stent in...they are optimistic about that...so it could be a long afternoon (4-6 hours!) But..she is stable. She had a great night last night...once she got a nap. She ate really well late last night and early morning.

Andy and I are adjusting to a whole new (HUGE) place. It isn't quite as family friendly as St. V...as they are dealing with lots more families. We ventured down to lunch and found a huge cafeteria with what seemed like a hundred different places to eat! It was a little overwhelming..and a little pricy! We miss our free meal cards. My verizon network guy isn't following me and am finding it really hard to get service...plus...no wireless internet...except way up on the 8th floor! So...we will try to our best to keep you all informed...but know that we are not at the easy access of communication.

Andy is doing fine with it all though...as he found some world civilization/conquer the world game on our new laptop...thanks Art & Reen...so he is completely content right now building up his own little world! Me...I like to be "in touch" so it is frustrating.

But overall..the people have been really friendly...just not as "accommodating" as we are used to . Guess that is what you get when you move up to the "Big Boy"

I was treated to dinner by my great high school friend, Karla...who actually lives up here and works for Uof M in the trauma/burn area. It was awesome to catch up with her...as it has been over a year since we've seen each other! She is headed to Ireland tomorrow for an anniversary trip! How awesome is that!

So...we will wait this afternoon...and be optimistic about what is going to happen with our little princess...we are anxious to hear the game plan! Most likely we will be here overnight...I will probably stay with Kate in the room and Andy will have to get a hotel room or sleep in the waiting room! We'll see what the news brings!

Love to all..will post the news later tonight!

Wednesday, October 24, 2007

Good New...Bad News

We had a long morning...Kate was quite the trooper! We left the hotel around 8 hoping to get some breakfast on the way...well...we missed the McDonalds and then there was nowhere else we found on the way. It took us a few missed turns before we got to the right place...but we did! It's so hard being in a new place...and this university/hospital complex is not the easiest to navigate for newbies!

Here's a quick wrap of our morning:

1. Chest xray! They had a nifty infant seat that they were able to strap Kate into...usually, I have to hold her and hold her arms up! This seat did that for us...but not to Kate's liking! So...we started our morning with a lot of crying, gagging and spitting up all over her cute outfit!

2. Vitals & Paperwork! It probably took over an hour for us to complete the patient history and medication info.

3. Met with Doctor! We had a short meeting with the cardiologist doing her cath tomorrow. He is a very nice young guy. He was familiar with her case and is hoping to place a stent in one of her pulmonary arteries to help relieve some of the pressure and allow greater blood flow. He said he wouldn't know for sure until he got "in there" tomorrow!

4. Echocardiogram! Usually, they sedate kids Kate's age. Luckily she fell asleep so they went ahead and did it without sedation! We were grateful...one less medication in her little body. She got a little fussy near the end..but I was able to lay on the bed with her, stroke her hair and watch Baby Bach with her. They said they got a lot of great pictures.

5. EKG & Oxygenation Level! The least painful and traumatic and quickest!!

6. Meeting with Cardio Doctor again! Met with the doc again to discuss what he saw in the ECHO. We did discuss the need for surgical repair of her residual VSD and of her tricuspid valve. We asked when...he said he thought within the month! He seems to think that by:
1. stenting the arteries
2. repairing the tricuspid valve
3. reparing the VSD
that she should come out of heart failure and have a pretty good prognosis. We will know more tomorrow after the cath...which could take between 3-6 hours depending on what they are able to do in the lab.

6. Blood draw: Usually Kate is a hard stick...but they were on it and had 4 viles of blood within a minute! At least we ended the morning on a good note!

So...a long morning for a little girl getting lots of poking and prodding! She is such a trooper and usually finds a smile after the trauma is over!

Andy and I are anxious to hear what they have to say tomorrow. After the cath, the Michigan doc will call our Indy doc and discuss his findings and also talk with the surgeons (both Indy & Michigan) After all that...1 of 2 things will most likely happen.
1. If she appears strong enough...they will schedule surgery within the next month
2. We improve her nutritional status and most likely tube feed her for a while until she gains some weight and strength.
So...good news: they feel they can do something and get her out of heart failure. Overall, things seemed optimistic that something could be done! yeah! Bad News: more surgery within the next few months...it's just really hard to think about putting her through that...but...if it drastically improves her heart function...then it definitely needs to be done! Obviously, she isn't thriving right now..so whatever can be done...we're up for it!

It's hard to not start "making plans" as we know no definites yet and things may change once they get into the heart and get real data from the cath...so we will wait...wait to see what tomorrow brings.

We grabbed a quick lunch...as we were starving and are now back in the hotel and looks like it may be family nap hour! Will let you know news tomorrow as we get it! Her heart cath will be around Noon...so extra prayers over your lunch would be much appreciated! Love to all!

Tuesday, October 23, 2007

Checked In!

We're here...all checked into our room at the Holiday Inn. We left the Fort around 5. Andy's parents came and picked up Seth! We really appreciate all their help in watching our little guy. He was pretty excited to go back...as he has "pastas to pull!" Translation: he helps Cathy pull up some Hasta plants. He will have great time playing in the fall leaves!

Our drive up went fairly smoothly. We ate a quick dinner in Coldwater...Kate was a riot...dancing to the music and checkin' everyone out! She certainly is a social girl. She is laying here on the bed...having a great time...smiling and laughing....but not eating!

I am so frustrated...I guess it's a good thing we are here and can talk with the docs about her total uninterest in eating...she was too busy socializing at dinner to eat...and wants nothing to do with the bottle now.

We are glad we made the trip tonight...as we did make a wrong turn and ended up having to back-track. This way...we can ALL get a good night's sleep and be ready to report to the hospital at 8:30!

Will fill you in the the details tomorrow afternoon...but just a warning...I forgot the cable to download pictures...so you'll just have to use your imagination...I will have to have a mega-picture post when we get home!

Love to all!

More than one Night Owl in the Layman Household!

So...it's 1:45 AM...and somebody just fell asleep! Any guesses? SETH!!! Can you believe it? Guess that hour nap in the car on the way home at 6:30 really messed up his sleeping schedule! Poor kid...layed in bed for 3 hours (okay...didn't lay in bed the whole time!) In fact, at one point I went in there and Seth was reading books and Andy was laying on the floor listening to the Colts game...and that was close to 11pm. I finally let the kid out of bed, thinking a movie on the couch would do the trick! NOPE...he made it through the whole thing! But...he's down now...let's just hope he sleeps until 10 or later or he is going to be a GRUMP at school! What a crazy life we live!

Oh yeah...and the ironic thing: Kate has been asleep since 8:30..go figure! Well..now she's crying...looks like it might be a long night for mommy!

Headed up North

We are headed to University of Michigan at Ann Arbor Children's Hospital Tuesday afternoon. They wanted us there at 8 am on Wednesday, and we thought it best to just go the night before and get a hotel room. Here's the plan as we know it so far:

Wednesday: Kate will have an echocardiogram (ultrasound of her heart), xray, EKG, bloodwork and we should meet with the cardiologist assigned to Kate. We should be done by 3-4 and will take Kate back to the hotel with us for the afternoon/evening.

Thursday: Kate will go in for a heart catherization. If they think it is reasonable to do something (stenting, ballooning) they will go ahead and do that. I guess it is a "wait till we get in there and really get good images of what's going on" deal. If they do something, Kate will be admitted and have to stay overnight. If they don't...we will most likely head home late Thursday afternoon/early evening.

They told us we should leave with some sort of a "game plan" If they (and I"m not sure who "they" are) don't' see any obvious fixes, they will take her before conference where a bunch of cardiologists & surgeons meet and discuss her case! That would not occur until the 2nd...but we don't have to be there for that...we would just get a phone call with the results of that conference. I have a feeling, due to Kate's complex issues...she will probably end up being discussed in conference. Hopefully not...we pray that they will see obvious fixes and/or things are getting better on their own. Who knows...we are just anxious to get answers. Our biggest prayer...that they don't push us for some sort of emergent surgery...we just aren't ready to put her under the knife again....so soon!

So....a big couple days for us...please keep us in your prayers! It's a little scary as we are basically starting all over with new docs, new hospital, new city, new policies, new nurses, ...everything is new and unknown. But so far...the UofM people we have talked to on the phone have been very nice and accommodating...so we hope for the best!

Thanks to Art & Reen...we have a laptop we can take and will keep you all updated as to the news as we receive it! Love to all!

Monday, October 22, 2007

Neither Up Nor Down

Well....Kate's weight stayed exactly the same this week....17lbs 10oz. I am really frustrated and bummed that she didn't gain...but at the same time...have to find some comfort that she didn't lose any weight! It's been a tough week for her eating wise...so it didn't come too much as a surprise.

Dr. Jim isn't too worried YET! He is willing to give her a little bit more time to do it on her own! We will be anxious to hear what UofM has to say about...probably that they want to "increase her nutrtional intake" HMMM? Any ideas...besides a tube in my girl's tummy! We'll see! We definitely want to do what is best for Kate and will give her heart and lungs the best chance!

So...we keep at it...the boys should be home soon! Kate and I will try and eat a good dinner! Check back later for our plans for UofM...we leave tomorrow!

Cup of Cold Water

Last night, Andy and I rented "Evan Almighty". I guess this movie has received a lot of criticism from the "Christian world" I, personally, thought it was cute...a little hokey at the end...but cute. It was nice to watch a nice, clean movie for once...much needed after our last rental of "Knocked Up--NOT IMPRESSED AT ALL!

Anyway...the point was that Evan wanted to change the world and God told him to begin with an Act of Random Kindness! Then...I remembered the verse about giving even a cup of cold water...how God rewards us for that!

If anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward. (Matthew 10:42)

1st of all, it made me so grateful for the numerous "cups of cold water" we have received...especially after Kate's birth! From dinners to watching Seth to ironing to cleaning to cards to prayers to encouraging words to hugs...IT ALL IS APPRECIATED. Thank you for showing YOUR love of God to us..through these "cups."

Secondly...it just again challenges me to offer more "cups of cold water" and do more random acts of kindness! I know how much I appreciate receiving them...and I know how much joy I can receive when I give back. It is my prayer...that I can show my love of Christ...through my simple offer of a "cup of cold water!" That's my challenge for the day!

Sunday, October 21, 2007

Kate Update


Our little princess has had a little bit better of a day..but definitely not up to mommy's standards! She did finally start taking a bottle at her 1am feeding...and drank decently through the night! She spent most of the day with Nana & Oompa and was a little stubborn for them. She has a weigh-in tomorrow and I'm not too enthusiastic about it...she just doesn't seem (to me at least) to be eating enough for her to grow on. It is so frustrating...at times, I feel she uses more energy pushing the bottle/spoon/sippy away than it would take for just eat it!

Other than eating...she is doing great! She loves being outside and took several walks with Nana today. She is so observant and looks for everything she hears...dogs, windchimes, mowers. We even think she has discovered the moon as she looks up to the sky when we ask where the moon is!

It's just us girls again...the boys are camping out at Andy's parents house and then doing some more fall clean-up tomorrow. Will let you know the "official" weigh in tomorrow afternoon! Keep your fingers crossed!

Feed The Children

Yes...folks...for only 33 cents a day you can provide food for this poor boy! Because of your generosity, one day, kids will no longer have to dig in the trash to find food.

Is this not the saddest sight you've seen! The poor kid only has one sock....is wearing his summer pajama bottoms (due to a misfire in the bathroom)...and if you could only see his face (covered with dinner!) That's my boy!!!

Hit Me With Your Best Shot

Kate did get hit...Friday afternoon with her 1st of the season Synagis Shot. This is a big deal shot to heart kids...it hopefully prevents them from getting a severe case of RSV which would most likely end them up in the hospital and most likely on a respirator. She gets the $1600 shot once a month through April...during all this icky months! It's always a pain insurance wise to get it through...plus then we have to arrange home health care to come and give it to her! It just all barely worked out this month, with the shot arriving via FedEx just an hour before the nurse came!

So as nothing comes easy with Kate...go figure she threw up this morning 2 feedings (1am & 8 am) She was interested in the milk...but just couldn't keep it down! Now...as the day is almost over...she has chowed down on solids...but won't even touch the bottle or sippy cup! I'm a little worried about dehydration...so I basically force fed her 3 ounces of apple juice with a medicine syringe earlier this evening. The weird thing...her spirits and activity level have never been better since her surgery. She is playing, interacting with us and just smiling and laughing at everything! It must makes no sense to us why she is so anti liquids today! She is enough to just drive you crazy...one minute loving the bottle...next not....one minute hating solids...next minute she can't get enough.

So...we have no idea if this craziness today has been due to the shot as we can't remember last year if she had any reactions...plus she was throwing up all the time anyway a year ago! I just hope and pray that as I finish this BLOG and go feed her, that she will take some fluids...if not...we'll have to call and see how much leeway we have before getting her on some IV fluids.

Why can't this girl make anything easy on us? Why? Why? Why? Well...I"m off to get it my best shot! Come Kate...EAT!!!

Thursday, October 18, 2007

Date Night!

As far as Andy and me...we actually got a night away! Thanks to Nana and Oompa for watching the kids...we had a nice night out yesterday! Thanks to a gift card, we had dinner at Red Lobster (yum yum!) and then opted to just do some shopping and walking around Jefferson Pointe, instead of just sitting in a movie! We picked up some good deals on clothes for the kids. Then...even treated ourselves to a Cookie Monster at Cheddars for dessert (YUM YUM YUM). It was nice to just spend some time together, reconnecting...and not discussing Kate's health the ENTIRE time!

Andy is thoroughly enjoying his time home...I can definitely tell his stress level has dropped! We are actually able to enjoy our family. His dad is doing remarkably well considering he has been having radiation and chemotherapy on his brain. He is done with the radiation now and a few more days of chemo before doing more tests! Larry is a strong strong man...and even renewed his Realtor licence during all of this! Continued prayers for him as he continues his brave, strong battle!

As far as me...just loving being at home with my family. I am meeting with someone tomorrow about a possible Christmas basket order...so I am excited about that and hopefully getting some good business these holidays. Kate has been on somewhat of a decent sleep schedule, and with Andy home, I have felt somewhat rested the past few weeks! YEAH!

Superman!


As far as our little daredevil...he's as cute as he has ever been! It amazes me how the kid has no fear...when it comes to playgrounds & physical stunts...as far as fires and music class at school...well that's a different case!
School was cancelled today due to a power outage in Leo...so Seth and I had fun with Gina, Mya and Jayden out at Jefferson Pointe....after getting his flu shot! We had the drama for a few minutes...the limping out of the office was my favorite! But...so far no side-effects as far as he goes!
We are really enjoying watching Seth grow up and out of the baby/toddler stage! It's amazing the conversations you can have with him...if you can get past all the "whys?" He's a keeper...especially when I get the "out of the blue, give me a kiss and tell me he loves me"...does it get any better than that?

Ride Em' Froggy!

Riding the froggy at the park a few days back!
Our little princess is having a pretty good couple of days! Her spirits are really good and she is trying hard to accomplish new tricks! She is working hard on standing again...and has begun to put weight on her feet again. We started therapy again Tuesday...so hopefully we can get her a little stronger and doing some weight shifting and bearing.
She is the sweetest thing...finding so much joy in everyday things like: balloons, kitty, ice cream, wind chimes and especially Seth. Her temperament is so easy-going...except when she doesn't want to be alone in her crib!
She is about to drive me crazy with her eating habits! She just jumps all over the place. Her current diet is heavy on being spoon feed, moderate on the self-fed solids and poor in the liquids. She just doesn't seem too interested in the bottle or sippy cup for that matter! She just takes tiny little sips at a time...it's enough to drive me crazy. I know she is getting enough not to get dehydrated...but I am so nervous for the next weight check..as she doesn't seem to be taking what she has in the past! I'm lucky to get 4 oz in her when last week in the hospital, she was gulping 6-7 oz in just a few minutes! I guess she is just a finicky little princess!
But overall...she looks really good! She appears to be completely over whatever it was she had the past two weeks. She's a sweetie!

Too Busy!!

All is well..just have been really busy with family stuff and going to bed early when Kate has! Gotta take advantage of those sleep times whenever I can! I'm off to get Seth's flu shot and then a quick lunch at McD's before heading to school! I will update our life and add some pictures later today! Just wanted to let you all know...we're doing fine!

Monday, October 15, 2007

Welcome to Holland!

I have seen this story on several websites of families with kids with heart defects. It just rings so true to me and is such a neat analogy of our lives right now...thought I would share!

Welcome to Holland!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience, to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

© 1987 by Emily Perl Kingsley All rights reserved

Daddy's Home!

We're getting an extra special blessing around the Layman house for the next couple weeks...daddy's home! Andy's work is being very generous, understanding, compassionate, giving...you name it...because they are almost insisting that Andy take a few weeks off of work. It has been crazy the past month or so...Andy going to work and then getting a phone call to come to Indy or that we are going to the ER...or too many trips to school at some wee hour of the morning to do lesson plans because we knew we would be taking Kate in to the doctor the next day! So...his principal, so graciously, has allowed him a few weeks to be home with us! YEAH! PRAISE GOD! So...prayerfully, Kate will stay healthy and we can enjoy some family time together! But...just in case, he's here and he doesn't have to "worry" about work for a while...plus...we have the Michigan trip next week and we need to focus on that!

There are so many blessings when daddy is home! Numero Uno...SLEEP! We can do more tag-teaming and share some of the night feedings and sleep in a little later. And...it's amazing what you can get done when you have 2 of you at home! Today, for instance...the garage is clean, the attic straightened, the cars are clean, the lawn is mowed! Plus, today, I finally made it back to Curves. It felt great to get some exercise...I have a LOT of work to do to get off these pounds I've put on sitting in hospital rooms, eating out 3 meals a day and dealing with stress attacks with chocolate!! And....we had a picnic at the park and had a wonderful evening playing and being together in the beautiful weather!

And...Kate even went for her weekly Monday visit with Dr. Jim! Her weight is 17lb 10oz. Down from our 18lb max right before she got sick...but up an ounce from our last weigh in! Her whole weight thing is really stressing me out...I guess because I am such a control freak and this is something I have absolutely no control over, even though I try really really hard! I know there is nothing more we can do...we are offering her food as much as we possibly can...it is all up to her! But..still, the pressure at times is almost overwhelming. I know that her heart improving is drastically dependent on her growing and we have this "feeding tube" idea constantly floating around in the back of our heads (although, we mentioned this to our cardiologist and he said she didn't need it!). So...we will just keep plugging along...hoping that she will "kick it into overdrive" here pretty soon...we keep reminding ourselves that it took several months last surgery for her to really start growing!

So...we're hoping for a great week...with lots of family time at HOME...and a chance to get caught up from the last few months! God Bless!

Sunday, October 14, 2007

Halloween Happenings!





A great day for the Layman 4! Andy, Seth and I made it to church for the 1st time since July! Wow...was it great to get back in the Lord's House and worship! The music is always so awesome...and it was a great morning to get renewed! Then to Nana and Oompa's for brunch (and to pick up Kate...who stayed with them in the morning!) Then...home and everyone...all four of us...got a 45 minute nap in! Is there a better way to spend a Sunday afternoon?

Then...off to the Pumpkin Train...it's a small train out towards New Haven...you ride the train around the woods and then it drops you off in a field...aka...the Patch and you can pick out a pumpkin, walk some trails and play games! It was our 3rd year and we've had fun all 3 years! It's kinda ironic: year 1 was the same day we found out we were pregnant with Kate! Year 2: Kate was in the hospital and we could just go with Seth! Year 3: All four of us together! YEAH!

After dinner...we carved the pumpkins! Seth had a lot of fun scoopin' out the guts and getting the seeds. Kate would have been right in there too...in fact, we let her sit on the table, and she had her hands in the guts and a seed in her mouth before we could even catch her! She's quick! I have to admit...I was pretty impressed with my pumpkin face...that 49 cent carving kit I picked up last year on clearance was quite handy!

So...we're ready for Halloween around here...got the decorations & pumpkins...well, except the costume for Seth. He has been dead set on being a lion...so guess we have to find one of those costumes. We have no idea where this came from...anyone out there have a lion costume for a 3 year old??

Saturday, October 13, 2007

Does It Get Any Cuter Than This?





One of my favorite times of day is bathtime! I just love to see the both of them in the bathtub together! Kate appears to adore Seth and just watches everything he does. Seth just gets sillier and sillier each and every day! It's just a fun time of the day to sit and enjoy each other's company.

The boys are in Portland today...helping Andy's parents with fall clean-up! The girls are home...tackling the seasonal job of reorganizing the closet! What a mess!

Kate has been doing well...actually sleeping well! I had to wake her up for both her 1am and 8:30 feedings. That's good news! Maybe we can get into some sort of routine!

Thursday, October 11, 2007

Late Night Party Girl!

Kate is lovin' being back home (and so are the rest of us) and we are back into our "routine" of our late night parties! I was sure that since she has hardly slept all day...we were good to go after the 9pm feeding...but no luck! She slept so well at the hospital...guess she was savin up for our mommy/daughter times at home!

..;;; ,mn m,.,,,,,,,,,,,,,,,,,,,,, BBBBBBBBBBBBBBBBBBBBBBBBB,III2111



Oops..guess Kate had something to say! She has discovered the keyboard and can't get enough of it......if my translation is correct...she said: "Thanks for the prayers. I'm feeling better! I love to take baths with Seth!" She was so cute at dinner...she kept making her "I want something noise" and I couldn't figure out what it was...but I did:


Evidently...the small pieces of bread I had broken up were not good enough! Have I mentioned how well she is eating...she will pick up and and eat almost anything you put in front of her! That hasn't happened in over a month...so she must be feeling better! One of her new favorites: watermelon...figures since it is almost out of season.

So...we trudge along...hoping and praying to make it until next week. We got a call that the U of M doctor was no longer available on the 24th to do the cath...but we got it moved...back just one day until the 25th..but with a new doctor! Guess that doesn't matter since we don't really know any of them anyway! Just glad we could keep it in the same week!

Pumpkin Patch

What a "blustery" fall day for a trip to Kurtz Pumpkin Patch! I was go glad that it (Kate..thanks Nana for staying with her) all worked out so that I was able to drive and chaperone the first fieldtrip of the year with the dragonfly class! We went to "pumpkin school" where we learned about growing pumpkins and saw all kinds of fun and funny pumpkins. Then...on to the hayride out to the patch where the kids were able to pick out their own pumpkin! What a fun adventure has begun as Seth begins school...and what fun to be along for such a fun "first time" event!

Trying to pick up the "big one!"

On the wagon...on the way to the patch!

"I just can't decide...they said I can only get one...but there are so many!"

The whole class with their prize possessions!

Take 5

Kate and I made it home this morning..with just 10 minutes to spare before I had to leave to drive on Seth's 1st field trip! Between Gayle & Nana...Seth and I made it out the door just in time!

Yep...so she is home again. I am totally convinced this was all the flu...due to the flu shot! I guess Good Morning America had a big story about how the flu shot is giving everyone the flu this year!

Got lots to do...just wanted to let you know we're home! Will post pictures from the Pumpkin Patch later today...as well as Kate at home!

Wednesday, October 10, 2007

Kate in 3 years!!




I saw this...and it brought tears to my eyes...as I could just imagine this being Kate in a few years...with the Princess shirt, the red hair, and touch of feistiness...and boy isn't it true...she has walked thru the shadow of death! God is good! Thank You God for being her shepherd and comforting her! I can't get enough of this scripture verse during this season of our lives!

Dinner Date at the "LL"

I've been busy "mom" today...with my boy! What a nice day to just spend with Seth! Thanks to Nana... (who so wonderfully took the night and all day shift with Kate)... I got to sleep all night in my own bed...cuddle in bed and watch Clifford and George and then hang out with Seth. It was nice! We got some "work" done and just spent the day together! We came back to the hospital around 3:30...played in the playroom and with Kate until daddy met us at 6. Seth told me he wanted to eat at the "LL" today! I was confused at first and had him tell me again and again! Then it clicked: "LL" = the Lower Level on the elevator and that is where the hospital cafeteria is! So, Seth and I had date night in the "LL" while daddy and Kate ate room service in the room!

Kate has had a pretty good day...according to Nana! She has been fever free all day! Her appetite continues to be great and she is playing! Nana told the doctor she was good enough to go home...but he said: "Not Yet" He wants some more antibiotics in her and she is getting a breathing treatment every 6 hours to help her lungs! So...we wait...wait and see what tomorrow brings.

The boys are bunkin' it at home and the girl's are bunkin' in room 6! This separation stuff is getting really old! Sorry to keep you all "out of the know" all day...sometimes it feels good to have other stuff going on and no time to sit at the computer! Love to all!

Tuesday, October 9, 2007

Settled In....Again!

So...nothing is obvious with our little Princess. She is just a giant mystery. Her spirits are really good and her appetite is still better than it has been in over a month (and she is keeping it all down!) Her fever spiked again this afternoon, but gets under control with a Tylenol dosage. We are waiting on her cultures to grow...and they started her back on an antibiotic...just in case. Who knows if it is viral...and if is it the tailend of last week's or something new she caught in the meantime. But...it looks like we are here for at least a day or two...with her being so fragile, I guess they want to be careful...and the fact that we brought her back less than 48 hours after discharge....I guess we just panic...but it would have been a long day at home with her continuing to spike a fever.

Andy was in charge of Kate this afternoon while I picked up Seth from school and ran some errands....he did great with her and even had her dressed, diaper changed and fed! Way to go Daddy! He was great to take the day off again today to spend with me...it was especially nice this morning while we were doing the ER thing!

We did get some good news in the midst of our rotten day...we re-qualified financially for our supplemental insurance...Children With Special Health Care Needs thru the Dept. of Health. We were a little nervous because we were just on the financial cut-off line. In fact, the only reason we did make the cut-off was due to the fact that Andy wasn't able to do his summer job because of Kate's hospital stints and therefore our income decreased! God is in Charge and is looking out for us! This insurance is a Godsend as it covers all prescription co-pays (several $100 a month), office visit co-pays (those add up with our weekly trips to Dr. Jim and speciality appointments) and limited travel expenses...basically it picks up anything our primary insurance doesn't! She still needs to be approved medically...but for some reason I don't think that should be a problem!! So we have something to be thankful and grateful for today!

It is frustrating because she appears to be doing so well...its hard to know why we are in the hospital...but I guess until this fever gets under control...the extra monitoring is only helpful. They will start IV lasix again, since she has her IV for her antibiotics...I guess the IV stuff is just much more effective...we'll get those lungs all cleared out!

Have to give a special shout-out to Art and Reen again for coming to the rescue...Maureen stayed up all night with fussy baby so that I could get some solid, straight sleep! Wow...so glad I had some sleep so that I could tackle today. Then...Art and Reen stayed in town to watch Seth until schooltime! What a blessing to have them around today! They are on their way back to NC for a few weeks before driving back for our annual Thanksgiving Gala....love you guys!

Well...no computer assess in room 6...so we have to come downstairs..better head up to see if the princcess has awaken from her slumber!

Mission....Impossible!!!

Well...we failed our goal...Kate went back to the ER this morning. After her fever came back this morning..we called our trusty Dr. Jim and he told us to go ahead and take her in. All of her bloodwork has come back okay! Prayerfully, it is just a reoccurance of this virus she has been fighting. Her appetite and spirits are great...so that is a great thing. Just have a few minutes, as I am just home for a minute to get stuff and get organized...although, I am getting good at this ER packing! Will fill you all in more later...so for now...it's PICU room 6 at Lutheran!

Monday, October 8, 2007

Chaos of Home Life

Somedays...those long boring days at the hospital seem okay! Not really...but life is hectic right now! Again...we were experiencing technical difficulties and had our computer "in the shop" for a cleanout...guess it is pretty messed up and we need to totally start over with everything...so need to get external hard drive and more gig of memory! I have no idea what all this means..but it should help our computer.

Kate has been a little fussy today...not sleeping real well! In fact both kids were up to stay at 6 am...that was after Kate and I finally made it to bed at 1:45 and were up several times through the night because of her O2 stats! Thank God for Nana who came to the rescue this afternoon so I could get a nap!

Add in that our dryer is totally caked full of lint (now fixed thanks to Gayle and Art), I have October baskets to get out this week, numerous calls to insurance agencies and pharmacies to get her Synagis shot figured out (that is her $1600 a month shot she needs through the winter months to help prevent her from getting RSV...her first one needs to be early October...aren't we there now?).. the normal chores of life... things are crazy around here. We even had dinner at my parents and I now have "Reen" back to the rescue tonight to watch Kate while I get stuff done..I tell you...I couldn't do it without my support team! YOU ARE ALL AWESOME! And...thank you Jesus that Seth was an absolute doll this evening...maybe due to a 2 hour nap...but still...he was just SO CUTE!

Oh yeah...and just to add a little stress to our lives...Kate decides to have a fever tonight! So...now we are "on hold" and praying she will make it through the night without spiking again over 101 so that we can just go back to our trusty Dr. Jim in the morning instead of the ER at who knows what hour of the morning.

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH! AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!
Okay..now I feel better!!! Well...Kate is screaming for Maureen and I have more work on the baskets....will fill you in..prayerfully from home tomorrow!
Love to all!

Sunday, October 7, 2007

Let's Try It Again!

We are back home again..as of about 12:30 dismissal! The doctor said she was doing great...so no need to stay...even though she had a really really cranky night. She (We, I should say) hardly slept at all...finally getting in about 2 1/2 straight hours from 6:30-9am. She's keeping her food down...but is just cranky girl!

She ate a great bottle, and started smiling as soon as we got home...guess the little girl knows where she wants to be!

Our goal....to stay at home until our appt. in Michigan on the 23rd...we have to make it 2 weeks!
But, we have shown improvement each time:
1st time: home 3 days
2nd time: home 4 days
3rd time: home 12 days
4th time goal: 15 days! WE CAN DO IT!!

Thanks for all the prayers...be back with you soon!

Saturday, October 6, 2007

Some Words From Kate

"Let me out of here!""I love my books!"
"All Done....New Toy Please!"



Is That Where They Get The Name?

So...here were are...day 4 in our little room in the PICU! And it wasn't until today that Andy made this little discovery! What we thought was just another cabinet...
Turns out to be.... So..I guess that is where they get the name "water closet."

Is this just too funny! I can't imagine "doing business" right in the middle of the room! Andy thinks it's cool and wants one in our family room! Go figure!!!

Boredom Has Come!

Not too much new around these halls today! She has eaten fairly decent today...keeping everything down this afternoon/evening. She still has a little bit more to catch up to what she was doing last week...but she is making strong strides. She was a little cranky this afternoon...but after a major major (I mean change all the leads and wires) blowout...her spirits are much improved. No smiles yet...but she is purposely playing with toys and has all her tricks (waving, raspberries, How Big!) back. So we do see some improvement...not super fast...but is it ever with Miss Kate? I think Boredom has set in ....on all of us!

I guess our departure is dependent on her xray in the morning...today's looked about the same as the day before...so as long as she can keep the fluid off her lungs...we should be in good shape. She has developed a cough today, but my "expertise" says that is good to get those lungs cleared out.

I got out a few hours today to run some errands...boy is it HOT! Is it still July and this past 2 month ordeal has just been a bad dream? I wish...you loose all sense of the the weather living in these freezing ICU rooms.

I'm a little sad today...as we had to miss a wedding I was much looking forward to! Art and "Reen's" daughter got married today in Ann Arbor. They had worked so hard to make it possible for us to come and got sitters, rooms, etc! It would have been a fun weekend and a great opportunity to forget about these hospital days...but Miss Kate has other plans for us!
Congrats to Scott and Laura...we miss you and wish we could have celebrated with you! We thought of our "Prime Rib" dinner order as we feasted on Taco Bell! We just keep reminding ourselves...this season of our life will pass...it has to...it just has to!

Well, our happy girl has turned fussy! Maybe we'll try another bottle and see if we can get her to sleep! Will post a few pictures later!

My Tummy Hurts!

It's always something...it's nothing major...but still! Kate appears to be having some cramping in her tummy....it could be due to constipation issues or even the oral antibiotic she started receiving yesterday once her IV line was removed. She just doesn't appear comfortable. In fact, last night, her O2 stats were hanging out in the 80's and she appeared real restless...she spit up some curdled milk and her stats jumped back up into the upper 90's! It's just a crazy cycle!

She ate really well for me at 10pm and 1am keeping 4 oz of milk down both times....she's had a little more trouble with the 4:30am and 9am feedings...but like I mentioned...she just doesn't seem comfortable....I guess until her system gets used to the new medicine. She was a little perky this morning, but is now taking a nap.

At this point, I'd like to stay in through tomorrow...just to make sure these past two feedings don't become a trend. We haven't yet spoken with the intensivist or cardiologist to get their opinion. I don't feel like it is a major set-back...just a little scenic detour...Kate is fond of those!

So...we are trudge on....anxiously waiting to see what she takes and keeps down! Love to all!

Friday, October 5, 2007

Turned a Corner

Kate has appeared to have turned a corner this afternoon. Her personality is slowly beginning to come through...and tonight after her dinner, she was playing with her toys for the 1st time! She ate a great dinner...loving her apple juice...as you can see from the picture...I couldn't get it to her quick enough!!
We were treated to a return visit from Dr. Parikh on his way back to Indy this afternoon. He said he just had to stop and see how her afternoon went and if she stayed off the IV...which she has!!! We also got a visit from our Children's Pastor, Trey, from church and he blessed Kate and I with a wonderful prayer. I also forgot to mention my visit from my wonderful friend, Melanee last night....she is always great support and takes time from her busy family to encourage me!! THANKS MEL!


It's been a pretty uneventful afternoon/evening..but that is good! We did see our paper girl (12-13 year old) in here for some breathing problems...lift her up will you...she is it the sweetest little girl and comes from a great (big) family!


Andy is getting ready to head back home for the night and Kate and I will enjoy some milk(actually, I hope she is the only one to enjoy it) and then hopefully both of us will hit the sack for a few hours! At this rate....(knock on wood) we should be home by the end of the weekend!
And...maybe tomorrow...we'll see the smile again and I'll be sure to get those posted ASAP! Love to all!

Getting Back to Old Tricks

Kate is slowly getting back to her old tricks...namely chewing on washcloths and waving "bye-bye"...especially to doctors. We have started her on baby food fruits again and whole milk....She is eating well, infact we have to almost stop her from eating too much...but some of it...not all...is coming back up again. She is definitely doing better...but her stomach still isn't "right" yet!


We had our visit from our Indy Cardiologist, Dr. Parikh...what a treat to get such special treatment. He was actually pleased with her latest echo and saw some improvement in the amount of leakage with her tricuspid valve....that is a very good thing!!! He was comfortable with all her stats, xray (even better today than yesterday) and was fine with us leaving her here in the Fort! He said they would be doing nothing more in Indy than they are doing here. So, overall...a good report heart wise!

Her IV went bad this morning and they had to pull it...they are not putting a new one in yet to see if she can keep enough fluid in by herself....I'm glad they aren't too anxious to poke her again and again and again! So...the pressure is on to get fluids in and DOWN!!

So..we will probably be here through the weekend at least...depending on how fast SHE decides to get her act together and keep her food down. Local healthy visitors are welcome...if you are in the area!

Seth is lovin' life at grandma and Pampas....it's harvesting time in the giant corn field behind their house...so he has lots of machines to watch. And...he and Pampa had to grease the mowers today cause they were squeaky! He's a busy busy boy.

Will update this evening...we're having a little bit of a hard time getting a good internet connection...we were definitely spoiled in that aspect at St. V!

On the Road

It appears that Kate may be on the road to recovery....Andy and I just arrived back at the hospital and she had a much better night for Nana. She has been keeping her med down and most of her fluids. Right now..she is doing a 1/2 & 1/2 mixture of milk and pedialtye. She has been awake more and is more aware of the nurses...she has got her evil eye back when they come in the room....that is a good sign.

So...now we wait to get a word from the intensivists and cardiologists to see if they think she is stable enough to stay here. The general consensus from nurses, Nanas and mommies is that she has the flu. Ideally, the flu shot is not supposed to give you the flu...but in Kate's case when she is weak and her heart and immune system is compromised...her little fragile body may not have been able to fight it off. I will ask the doctors what they think today...but hopefully...that is the case and a few more days she will be home!

Thanks for all your continued prayers and support...we will be in touch when we know more!

Thursday, October 4, 2007

Down It Goes....Up It Comes

Well...things aren't staying down as much as we would like them to! She has had 2 bottles of Pedialtye...and 1 bottle of milk. The Pedialyte went over okay...she kept about 1/2 of those down...but not so much on the milk. I can almost feel her tummy contracting and pushing it back up! The poor thing....she wants to eat...appears hungry and interested...but just can't keep it down.

So...we don't know what to do...fortunately, the gagging and wrenching has pretty much stopped between feedings...but obviously, her heart is not strong enough to withstand days and days of vomiting and no nourishment. We're afraid we may be making a trip tomorrow either north or south. We are anxious to see how tonight goes, talk with the intensivist and cardiologists and get a feel for her status. It is so hard to sit her and watch her suffer.

We need lots of prayers that she will pop out of this and start on a fast road to recovery...I think she looks bad...and she is just so sleepy! I am getting ready to give her a bath...get her all clean...and maybe try some more Pedialtye to get her tummy used to stuff in it! Maybe that will perk her up a little!

Could this kid just once catch a break???

Seth is off for a few day stint at Grandma and Pampas...he has lots of yard work to do there and says he is going to be really really busy! What a sweet boy! Nana, the night nurse, is coming to stay with Kate tonight so I can get a good night's sleep...it may be a long long day tomorrow!

Kickin' Up Her Feet!

Kate kickin' her feet up to relax! Gotta love Kate and her feet!

Kate and I had an okay night here as roommates in PICU Room 2. She was really gaggy and dry heaving a bunch through the night....it is really hard to lay here next to her and listen to it without getting up to check on her....so not the best night's sleep here on my little single fold-out futon!

This morning...the intensivist came in and told me her chest xray looked a lot better than yesterday...her lungs much more clear! Good news! But..she may have a small kidney/urine infection...but they started her on a broad spectrum antibiotic and that should cover it!

I've been given the go-ahead to try a little pedialyte...I'm a little nervous as she is still heaving...but our hope is that the pedialyte may settle her stomach...so we're off to give it a try....I'lll be sure to cover myself with lots of towels first! Will let you know the outcome in a while.

Andy is home with Seth and will get the fun of taking him to school today!

Wednesday, October 3, 2007

Sleeping Angel

Our little angel is just sleeping away...I think FINALLY the vomiting has stopped and she has been able to keep her meds down. She is really tired...and appears to be sleeping peacefully.

The FW cardiologist did an ECHO tonight...he had some concerns from her XRAY that he said he wouldn't be able to sleep until he knew for sure the situation. Well..fortunately, so far...there doesn't seem to be much negative (nor positive for that manner) change in the function of her heart. That is good news in some aspects, since he was concerned that the other side (left) side of her heart may be failing...BUT IT IS NOT! The FW doc did call our Indy cardiologist(at his home in Indy, none the less) to give a heads up...get some feedback and let him know he was sending the ECHO to Indy. Dr. Parikh (Indy) will look at it tomorrow and and then we can get a "plan."

So for now...the plan is to let her rest, get her fluid levels all situated and get her strong enough to start feeding again. We hope to know tomorrow what the immediate future holds...whether it be home, Indy and or even possibly moving the UofM date up a bit.

We were told again tonight that Kate has a really really tough disease...and we know we have a long long road ahead of us....a road of complete uncertainty...a road of spur of the moment trips to the hospital...a road of sadness...and a road of joy. So many forks...and we just don't know which one God has already planned for us. So...again we take each day and be thankful for it and the time we have with Kate.

This doesn't mean we are freaked out about all of this...that we don't have moments of complete panic and sadness...we are human and she is our little girl...but somehow...we carry on...we "do it" and we live life...I guess that is the only choice we have!

Thanks again for all the prayers and our trusty friends Gayle and Jane who once again stepped up to child-care...as well as Nana for watching Kate while Andy, Seth and I went to dinner....and to Nana and Oompa for watching Seth this evening. Thank you!!!

Just when you thought.....

Everything was going so well....BAM!!!

Never a dull moment around with the Layman4! Kate continued to throw up at her 1am and 6am feeding. Mommy instinct told me....get her seen! So by 8:15 we were in the pediatrician office with Dr. Jim. (Wednesday is usually his day off..but he just happened to be in today doing physicals....Praise God!) She was continuing to dry heave throughout the morning. Her lungs were clear and liver was normal size...he did send us for a chest xray though...so after that rigmarole...her xray should her blood vessels in her heart were enlarged...the very beginning stages of worsening failure...Dr. Jim contacted the cardiologists at St. V and they thought it would be a good idea to have her watched for 24 hours!

So...we are now experiencing life in the PICU at Lutheran Hospital! Andy had already made plans to take the day off (after she lost her 1am feeding!). So....after Gayle came to Seth rescue (again!)...Andy met me at FW Pediatrics and we drove Kate 20 minutes down 69 to Lutheran. She has been here about an hour and is stable! They are giving her some IV fluid and IV Lasix...and are getting ready to draw blood for all sorts of tests!

We don't know for sure what is going on with Kate: a flu bug, a reaction to her vacinnations/shots from Monday, heart issues, her DiGoxin (heart medicine) level might be too high...who knows with Kate??? Our goal is that she will get over this fast and we will be back home again! It is nice to know we are still in Ft. Wayne and can have dinner with Seth. They are doing a great job so far here at Lutheran in the PICU!

They are going to have the FW Pediatric Cardiologist come and look at her. He has seen her a couple times when we were in Lutheran after her 1st surgery. He will probably do an ECHO to see if there are any new heart issues!

So...now we wait again...wait for Kate to perk up and start eating again! We just wonder if this routine is going to continue and for how long....we did make it longer this time than before! It's frustrating, nerve racking and scary...Kate is just SO FRAGILE...the littlest thing sends her over the edge. Prayers are needed...God send us that miracle....NOW!

Tuesday, October 2, 2007

Cry Me A River

The tears have been flowing at the Layman household today! It's just been one of "those days".

We're hopin' that Kate's tears are just due to her shots yesterday. She has just been grumpy, irritable and moody today! She has thrown up again twice today...but I really feel it is due to the shots...if it continues...we'll go get her looked at...but it just makes sense that it is related to her shots. I've attached a picture of Kate...reenacting her shots yesterday!
As far as Mr. Seth...the trauma continued today as the fireman came to school for a visit today...I just hated to see him being drug out of the van...man does that boy have a grip! His teacher assured me that he calmed down soon. We're having that "to nap or not to nap" quandary again. He just gets really tired by the end of the day with no nap...I'm thinkin' we may have to go back to a short little afternoon nap! It's fine with me, as it will give me a break in the day...but might extend bedtime...the choices we have to make. It just breaks your heart when you continuously hear..."I want mommy" from the top of the stairs...the willpower it takes to be a mom!!!

So...another day with the kids...wouldn't trade it for anything...but at the same time...whew! It's a good thing I had a good night's sleep on my new mattress...which I just LOVE!

Monday, October 1, 2007

Anticipation

There is a lot of this around our house....why, you might ask! Well, let me tell you!

1. Anticipation of our trip to UofM for a 2nd opinion. We finally got the scheduling call today and we are scheduled to go on October 23-24. Kate will have routine EKG, echo...and all the normal clinic work on Tuesday...then she will have a heart catherization on Wednesday. We figured we wouldn't be able to get it scheduled for this upcoming weekend...a few weeks out is okay with us as it will give Kate more time to get stronger and PRAYERFULLY have her arteries grow. There are a lot of unknowns about this trip...a whole new place with all new doctors...but we will wait with anticipation.


2. Anticipation about Kate's weekly weight checks with our trusty pediatrician. We went today...and Kate was only up 1/2 ounce...Yeah...1/2 ounce. That isn't very much at all. She is now officially 18 lbs. I am bummin about it as she has a really really good week...but Dr. Jim said was not too worried as she had such a good gain last week. So..now we anticipate another great week and PRAYERFULLY a weight gain this next week. Otherwise..he thought she looked good...no signs of fluid build-up. She had her 15 month check-up which included 2 vaccinations and her flu shot! She was quite the trooper! She has steadily grown in all areas...weight, length and head-size since her 12 month check-up...not a lot, but considering all she has been through, Dr. Jim was okay with her growth chart! So we wait with anticipation for next Monday and the moment we lay her on the scale!

3. Anticipation in regards to sleeping tonight in our NEW BED! Yes...Andy and I went bed shopping tonight as our bed was shot! Note: Don't buy a bed from a man in an abandoned warehouse...whose number you got off of a telephone pole! I know...pretty stupid...we were just trying to be frugal! But...now we have a new genuine real mattress and I am pretty excited about tyring it out tonight....so PRAYERFULLY...Kate will sleep tonight and I will be in wonderful Lala Land for several hours.....and I'm off...in anticipation of sure bliss!