Sunday, September 30, 2007

Chalk Up Another One!

Another great day for the Layman family! The four of us had a great time at the zoo today! What another wonderful fall day! We enjoyed lots of animals...but also took advantage of a ride pass and rode several rides! Seth and mommy rode the new sky ride...a little nerve racking for mommy...Seth has no fear and seemed to be sitting too close to the edge for mommy to really enjoy the ride! The new African Journey is going to be quite the exhibit when it is done. Then all four of us also rode the train and boat. Kate was lovin' every minute of both! She was such a big girl and sat all by herself (next to me, of course) on the train.

Then...the kids and I headed over to my parents for dinner...Andy stayed home as he appears to be fighting off some kind of "ICK". What a treat for Seth as we were joined by the cousins, as well as Doug and Amy! It has been a long time since I've seen them. Kate was lovin' all the attention and distraction too! Wouldn't you know the boys would find the new compost pile for diggin'....straight into the bath after this one!

Kate continues to do well....she is looking great to all of us! Every day, she seems to get a little stronger! I'm anxious to see what happens this week concerning a trip to Michigan and her weight gain....we go in for our weekly check on Monday afternoon!

Saturday, September 29, 2007

Fall Decor

Yesterday while we were at the apple orchard...Seth and I picked out some fall stuff to decorate our porch! I just love all the gourds, mums and pumpkins this time of year...and since we feel like we missed fall last year with Kate's 1st surgery...I decided to go ahead and make a display! Seth picked out all of the stuff and we put it together yesterday afternoon. I think it looks very nice and I often find myself looking out on the porch to catch a glimpse!

Well...it is just us girls today! Seth and Andy went to Portland for the day to see Andy's parents and help with some odd jobs around the house! Not quite sure what Kate and I are going to do...maybe WE can take a few naps! Also...I've got to get her closet cleaned out and seasonal stuff moved...I know I will be bummin' when I see all those adorable summer dresses that she has outgrown...or certainly will by next summer! It's sure to be a relaxing day at home for Kate and me!

Friday, September 28, 2007

Apple Pickin' Fun

Seth, Kate and I had a great time today at the apple orchard. We were blessed to have our great friend Gayle along with us to help with Kate and be our photographer! Gayle has been a tremendous help...now and when we were in the hospital! We love you Gayle!!

It was a beautiful day and all though we only picked a 1/2 peck...we had fun. We had so many great shots from the day...I couldn't choose...so here's a glimpse of our day. So much better than the days spent in the hospital!!!



BTW...Kate continues to do great. She is lovin' being outside and is getting stronger everyday! Thanks for all your prayers and support...I love seeing who is reading the BLOG...so keep letting us know.

Amazing!

Again...I am humbled by the counter on the bottom of our page....over 20,000 hits! I am amazed at the impact this little girl (and a pretty cute 3 year old too!) has made on the world. Thank you all for sharing in our journey...I've said it before...but thank you! You never know how much it helps to know so many of you are loving, caring, and praying for us...and checking our blog....and get "worried" when I miss a day!

I'd love to know who all is sharing in our journey...so if you haven't commented yet...please feel free to or send us an email (aklayman4@verizon.net). And maybe soon...I'll get caught up enough to respond...but for those emails we haven't yet...we read them and they are a blessing.

We appreciate you all... the strangers with heart kids...those who have just stumbled upon us...the long time friends...the nurses and doctors...the family...the "BLOG" stalkers :)...the co-workers...the new friends...the friends of the friends...to everyone....thank you for sharing our story.

I thank my God every time I remember you. In all my prayers for all of you. I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus....Philippians 1:3

Thanks for being our partner!

BTW....no word from Michigan yet...evidently it is all caught up in the "insurance aspect of things" We've been assured it is being taken care of and we should get an appointment very very soon!

Thursday, September 27, 2007

Laughter Is The Best Medicine

What a treat at dinner tonight! Kate was enjoying some icecream after dinner and she actually giggled...in her own special way! This was the 1st time she has really done this and it was pretty neat stuff around here! Amazingly, we were able to get it on video...thanks to our new handy dandy camera. (Way to go Daddy...gotta love that EBAY!) It was my 1st experience with movie making..so pardon the foot shot...but it is just SO CUTE...we just had to share it with all of you! Kate is definitely feeling better...grabbing that spoon right out of my hands!
video

Technical Difficulties

So sorry for no posts...but this time it was due to our computer and not a trip with Kate! She is doing great...in fact, we have a great video of her tonight...maybe I can figure out how to get that on the BLOG! She has had a great day and is lovin' life right now!

As far as the computer...last night, after a power outage...our computer wouldn't turn on. After talking with some foreign guy...probably in some foreign country...for an hour I gave up! He kept wanting me to disassemble my computer...and that is definitely not one of my forte's. He told me we probably needed a new motherboard...sounded expensive to me! Well, this morning after a quick chat with a computer guru...he suggested I take it and and have it checked out...and fortunately, it was only the power supply...$40 and 20 minutes later...our computer was working again! YEAH! I had nightmares of lost info and pictures and trying to figure out how to fit a new computer into our budget! God was watching over us this time! YEAH! Guess it is a warning to backup all of our important stuff though!

Speaking of power outages...we had one for about 90 minutes last night! Luckily, it was after Seth was to bed and we didn't have to worry about him. However...candles as your only source of light and a huge tank of oxygen made me a little nervous! But...we just used a flashlight with Kate, fed her and we were all in bed by 9:45! WOW! But don't get to excited...2 of us were up again by 10:45...any guesses???

But...overall a great day! Seth and I even got a nice swim in this evening at the pool. It was well heated and a perfect night to swim. I am amazed at how well he is doing in the water... He would dive down to the bottom of the pool and pick up things (with my help of course, pushing him down!) I think that is pretty impressive! Add school, a walk, a meeting with Kate's therapy agency, meals and playtime....a great Thursday to be at home! Thank you Jesus!

Tuesday, September 25, 2007

Terrific Tuesday

So...another pretty good day around here at the Layman house!

Night Nurse Nana came again to take care of Kate and do the feedings! I got a good 7 hours and wouldn't you know it that the little Misses behaved herself and slept all night for Nana..minus a 1:30 a.m. feeding. I'm so grateful to Nana for doing that and letting me get caught up! Also, she came back to watch Kate while I took Seth to school and ran a few errands! Also...my laundry gal, Gayle, was here for a bit today to get me all caught up! I couldn't do it without ALL of my helpers!

Seth was back at preschool today...with not a whole lot of mention of the "fire". I am having so much fun doing the mommy thing and dropping him off and picking him up! I've only done it 3 times...so it is still fun and new for me! Seth seems to be adjusting really well...and if we really really pry...we can get a little bit of info out of him regarding what he did at school each day.

Kate had a really really good day. Her appetite continues to pick up! YEAH! In fact, tonight she even gnawed on some pizza crust...that is a big step because for a couple weeks now, she hasn't wanted much to do with "real food!" She is keeping her food down and her attitude and energy level continue to get better! She is still breathing hard..but we think she must be feeling much better just based on her actions and attitude.

Everyone knock on wood...we have a little over an hour left and I think we have made it through a Tuesday! Both times we headed back were on a Tuesday...so we are looking forward to our 1st Wednesday in Ft. Wayne since July 18! WOW!

So... all is well and back into somewhat of a routine. We are STILL waiting on the call from U of M...but they must have our info because the billing people have already called regarding insurance. We will call tomorrow to get some definites. I seem to be spending a lot of time on the phone with various insurance companies and medical providers getting everything straight...that whole aspect of all of this is CRAZY!

A couple pictures of Kate and her pizza! We just got a new camera...and we are still trying to figure it out...hence the blurriness and strange color... SORRY!

Monday, September 24, 2007

So Close

Kate was so close to hitting 18lbs today at our weekly trip to see our trusty pediatrician, Dr. Jim. 17lb 15 1/2 oz! I am estactic because that means over 6 ounces gained this week...even with our hospital trip and vomiting episodes! I was even more thrilled when Dr. Jim said it was probably legitimate weight gain as she had no signs of fluid retention! It makes all those nights of feeding and frustration when she doesn't eat so less overwhelming and consuming!

Otherwise...she looked good to Dr. Jim. He was (and is) always very encouraging and we both left there today optimistic about Kate's future. We know she will always have heart issues...but maybe, by the grace of God...she will pull through this...just as she has proven to pull through so many things before. Kate is still a mystery and there are a lot of unknowns, especially with her hypertension in her lungs...but she is a fighter.

We also got the call from Indy Cardiology and they told us we should we receive an appointment call from UofM tomorrow! Sounds like they really want to look into the tricuspid valve leakage and see if if/when it is worthy of repair/replacement.

Otherwise a good day. Kate hasn't slept much...a total of 4 hours since 11:30 last night! Dr. Jim says she may be having feelings of anxiety with the heart failure...or she is just a social queen and doesn't want to miss out! I have made it so far through the day thanks to lots of help! I am so grateful to everyone who comes and helps with Seth and keeps him happy and occupied while I tend to Miss Needy! Thanks today to Miss Gloria, Miss Jane and Nana! I'm afraid of the days when Seth is stuck with just me...he'll probably be so bored!

We're off to dinner with Nana...she and Seth have been cooking dinner while we were at the doctor. It was cute...today I told Seth we were taking Kate to the doctor. He asked if she was sick again. I said, No...we just want to make sure she doesn't get sick so we can all stay home. His reply....YIPPEE!!

Just a quick update

Just wanted to add a quick update for all our loyal readers...as I have a few minutes as Kate is awake...again! I was excited when she went down at 10:00...hopped in bed, but got the oh so familiar wakeup at 11:30! Oh well...got an hour in I guess.

All is well...we had a great day and even had picnic at Shoaff Park. What a beautiful day. Seth has been so fun at parks lately, and has been doing a great job at finding "new friends" to play with! Note: Seth is not old enough yet for underdogs...gave that one a try tonight and he ended up flat on his back under the swing! OOPS! Kate just loves being outside and watching people. She did get to swing and ride the bouncy frog...she thought that was a lot of fun. We did get the "What's wrong with her?" question from a 5 year old girl! I knew those were coming in relation to her oxygen! Plus...made conversation with another family. Guess we can look at Kate's oxygen as an open door for testimony to Praise God and share our story with people who ask.

We are enjoying our new highspeed...hopefully you all got the email change notification...aklayman4@verizon.net. Am sharing a cute video clip I'm stealing from Deanna...so excited we can actually watch these now! This is so my life...especially at bedtime! Have a great day...love to all!


Saturday, September 22, 2007

Life With Kids

What a day here at the Layman house!

1st of all: it started off pretty late as Kate again was in hospital mode and not too happy about being left alone in her room. She has this uncanny ability to know...even though she WAS fast asleep...that she is now alone in her room....and she DOES NOT LIKE IT! Andy and I were both in a fog and so tired...I don't remember all the details of the evening...Just that Andy was awake and playing with her at 2 am...I found myself asleep on her floor around 3:30 am and she didn't appreciate being awaken at 7 for her meds. I think the best sleep any of us got was from 8-11 in the morning...thank God Seth was still in Portland.


I have a feeling it's starting all over again tonight...as she WAS fast asleep in her bed and I was happily dozing off into lala land by 10:30...when we heard the illustrious cries from Kate's room. As long as I stand there...she's fine...but the minute I leave the room...you'd think the world was ending. So...the girls are both downstairs, in the hopes that maybe I can get something done until the 12:30-1 am feeding!


Now...on to Seth. We were thrilled to have him home again around 1:30. HOWEVER...I am guessing that he had a fire drill at school on Thursday because he is terrified that there is going to be a fire. At one point this afternoon, he was throwing a fit...and I mean a FIT...because we all weren't going outside. He is constantly, and I mean CONSTANTLY telling us he doesn't want there to be a fire. It even got to the point today that I loaded him in the car and we went and talked with our friendly, local fireman. He assured Seth we didn't need to go outside UNTIL our smoke alarms went off...and then at that point, the firemen would come to our house very fast! It's crazy...the kid is fixated on fires and smoke alarms...I don't know how many times we had to count our smoke alarms...AND to top it all off...evidently there was a fire somewhere...cause he heard some sirens somewhere (far away) and that put him into a tizzy! I am hoping and praying it is only a temporary fixation/fear and we can move on to other conversations this week. At first I was genuinely concerned for his fear...now I just think it is almost hilarious how worked up he is getting.

Saturday night at the movies...who knew Curious George was so fascinating!

Friday, September 21, 2007

It's a Good Day!

So....2 exciting things today!

1. Kate is home! YEAH! She has enjoyed our few short hours at home...we got back around 4:30! She loved her bath and her balloons. We are hopeful and optimistic that we will be home for a while...at least a couple weeks until we head to Michigan.

2. We have high speed Internet! YEAH! After experiencing the 21st century in the hospital for 2 months, Andy and I went ahead and bit the bullet and sprung for Verizon broadband...it's not the mega fast stuff like cable and fios...but compared to our dial-up...we are pretty geeked up around here! I can't believe how fast things load and I can even watch video clips without having to do a load of laundry while I wait! I will forward our new email to all of our friends/family tomorrow once I figure all of that out...meanwhile, our netzero account is still good for a month or so!

Seth has been having tons of fun with Andy's parents: Grandma and Pampaw. They will bring him home tomorrow afternoon and we are hoping to do something fun fun as a family on Sunday! Thanks again for all your prayers and support with our little 3 day hospital stint....and keep those prayers coming for our upcoming trip to Ann Arbor...will let you all know the details as soon as we get them!

Andy and I are hoping to get a good night sleep...our night on the 3rd floor was pretty rough...among midnight and am feedings, Kate's monitor beeping, nurse visits and a bed smaller than a twin...we didn't get much sleep....May we all sleep well tonight!

3rd Times A Charm

....at least that is what we are hoping and praying for! We are out of here for the 3rd time this afternoon....we are just waiting on a few final details and we should be on the road before rush hour. YEAH! Kate has kept all of her food down and taking more and more solids! She is doing great with the bottle!

We talked with Dr. Parikh (cardiologist) and he has talked with Michigan and looks like we will be heading up there soon! We have a wedding there on Oct. 6 and are hoping to get an appointment on the 8th! They will examine her, do an echo and possibly a heart cath to see if there is any ballooning or stenting they can do! We are anxious to get another opinion...and maybe, hopefully, either she will be getting better or they will be able to do something!

So...another shot at home...prayers for a restful, peaceful weekend! See you in the Fort!

Thursday, September 20, 2007

Movin' On Up

Movin' upstairs...bed and all!

It finally happened today...we actually moved upstairs to the 3rd floor! They are crazy busy around here and I guess they desperately needed the space for "really sick kids" downstairs in the PICU! We miss the extra nursing care, sleeping arrangements and comfort of knowing the staff...but being upstairs hopefully means we are one step closer to getting home.

Our move was quite uneventful...we are back in a corner room with NO VIEW...so it is pretty quiet. Kate has been in great spirits and has been awake, alert and playing all afternoon/evening. We even took a wagon ride and spent some time in the 3rd floor playroom...not much for a baby to play with...but still a new environment.

Kate going for a ride on the airplane in the playroom!



As far as eating...she hasn't thrown up all day! YEAH! She is doing great with the milk...she has been a little finicky with the baby foods and yogurt...but what she has taken she has kept down. We are really going to push to get her home tomorrow...we feel we are capable of pushing the liquids and will obviously get help again if we need it.


Andy and I are going to rough it in her room tonight...sharing the very small, hard couch! We are hoping it's only 1 night and we are both still pretty exhausted from our lack of sleep Tues night and SHOULD sleep. Love to all!
Kate sportin' a little bedhead!

How many toys does Kate have? SOOOO Many!!

Longing for Days Like These!





Elasticity

Kate was able to keep her late night feedings and her morning feedings down and we hope and pray that her vomiting has been solved. We are thinking the problem was a plumbing issue. Due to her genetic condition and her medicines, Kate has always had a constipation problem. It is no secret in our house that we all know when Kate receives her call from nature. Noises that should come from a Longshoreman and not a one year old girl fill the air and then Seth usually will announce loudly "Kate's poopin again." She had also been taken off of antacids last week since she had not been vomiting. We think maybe they were working and she was placed back on them last night.

The concern around here is that due to her heart not working properly, Kate may not be receiving enough blood to her intestines for them to do their job. Krista and I think and pray that is not the case but that it is just the medicine changes.

We will be moving up to the pediatrics unit today and maybe even coming home in the next day or two if Kate can keep her feedings under control. She has been in a pretty good mood today and has been playing and watching Sesame Street. She really likes Sesame street and giggles from time to time, as we all do.

We still are waiting on word from Michigan but did speak to the cardiologist from St Vincent's more and received information of what may come if Kate's heart does not improve. We still cling to the hope that the worse will not happen but with that in the back of our mind, we want to get Kate home so she can enjoy life, swing, go for walks, and play with Seth.

We will be posting some photos of Kate (as soon as Krista returns since I do not know how) playing in the yard and swinging as we have enough photos of her in the hospital.

We were watching a game show last night and the question was "what is the ability to stretch under stress and then return to an original shape called?" The answer was elasticity. Please pray for our elasticity and for Kate's. ....Andy

Wednesday, September 19, 2007

LIMBO

Here we sit in limbo again...just to wait and see! Kate's day has been so/so. She has kept 2 out of 5 feedings down. The 1st one made me really mad because they made her get a xray right after she finished eating....we all know you NEVER lay Kate down flat on her back right after she has eaten.

She got an echocardiogram this morning...there doesn't seem to be any change with that. One cardiologist who saw her last week thought she looked better today than last week. The conundrum is why she is throwing up. We are starting her back on her reflux medicine again....maybe that is the problem. Another cardiologist came in today and gave us her opinion...one we haven't heard before. She too is anxious to hear from UofM and get their opinion. Surgically, she sees no reasonable surgery to be done now...and she hopes time will heal.
So...here we sit...trying to catch a few naps here and there. Kate has pretty much slept all day, but she was also up all night. She has perked up after this last feeding and is sitting up and playing. She is getting some IV fluids...but as her feeding pick up, we can drop those down. We've heard we should here the UofM report tomorrow and hopefully can be home soon...like in the next day. We don't feel we have overreacted..but right now, she is doing okay and we want out of here again! Lots of confirmation in that her blood numbers, liver size, color, xrays are all normal.

Will post a couple pictures of our sunshine later this evening...thanks for your prayers...and to everyone who stepped up to the plate today to take care of our Ft. Wayne responsibilities, especially our son!

A Way of Life

So...I guess ER's, Critical Care Transports and ICU Rooms will be a way of life for us....since tonight we have experienced all 3 again! Yes...we are back in Indy....after a trip to Lutheran ER and an ambulance ride back to St. V's.

Kate is okay...she just had a really bad day "throw up wise"...add that she was breathing a little heavier, slept alot and wasn't too excited about eating...we made a call down to her cardiologists. He thought it would be a good idea to have her seen...and we agreed. We just don't know how much leeway to give her....She was by no means as bad as "last time"...but we aren't taking any chances with her!

So...after a couple hours and tests at Lutheran, we were given the okay to take her home and drive her down in the morning, or they would go ahead and transport her tonight...we opted for the later since neither of us need the extra stress of driving Kate to Indy.

So...Kate and I are back...now in Room 11. The intensivist is not alarmed...he is glad we brought her in when we did....either it is nothing and we will be home in a day or two...or she will get worse and then they will be able to reevaluate things.

So....Kate is stable...sleeping away so peacefully. I'm sure we'll have a day of cardiology tests and talks. I am going to try and get some sleep (HA HA). Andy will be down later this morning. I will keep you all informed...keep us in your prayers...it's been a very long night!

Sunday, September 16, 2007

Perfect Sunday

We had a wonderful day at HOME! Thanks to "Nurse Nana" who came and did the night shift...mommy and daddy got a great night's sleep and cooked breakfast!...That was awesome....Thanks Nana!

Then...just a wonderful day outside in the warm sunshine. Kate loved sitting on the blanket and playing with toys and watching Seth. We didn't get a whole lot done (beside cleaning out the deep freeze)..but it was great!

She ate even more today...and played a little more. She appears to be adjusting to home life just fine...except for the whole sleeping thing...but in a few days, hopefully we'll have that in somewhat of a normal pattern.
Her favorite activity: taking baths....she just plays and plays! God lo
ve her..she is the sweetest thing you would ever meet in your life!

Shout Out

Mailing letters in the "big mailbox by McDonalds"

A rousing game of "Rock Em, Sock Em Robots"

Just had to dedicate a BLOG entry to Art & Maureen...aka "Reen." They were truly lifesavers the past few weeks...again! (They also came for 2 weeks last October when Kate 1st came home from her 1st surgery) They drove all the way from North Carolina...just for the sole purpose of watching Seth...and boy did they treat him right! That boy was so loved...and so lucky in the things they did for him and with him.

He is still talking about some of the things he did with Art and "Reen." And...he has a new saying: "I'm sparkling clean...like a shiny new penny."

What a relief to be able to focus our attention on Kate and know that Seth was in such wonderful, giving, loving hands while Andy was at work or in Indy. I'm just so sad I personally didn't get much more time with them...just an hour or so at our homecoming and a few minute goodbye on Saturday. I have known them ever since I can remember and Thanksgiving is a tradition with Art, Reen and their family...so many memories.

We miss you Art & Reen...come back soon! You have truly been a blessing...Seth adores you...and so do the rest of us!

Maureen lovin' on Kate...she only got a few minutes when Kate came home.

Art and Seth at the zoo...What fun was had there...especially when they just happened to run into Elijah, Lucas, Aunt Amy & Uncle Doug!

Saturday, September 15, 2007

REWIND

Found a few great pictures...with a few great people...on my camera left over from the hospital...just had to share them....after this..NO MORE HOSPITAL PICTURES!

"No thanks mom...I'll think I'll have the "BIG" ones instead of the
little pieces you cut up for me!"


"Now that I've got it in my mouth...what do I do with it?"


Betty...the "unit representative" reading to Kate while mom and dad packed up her room! Kate loves her stories!


Kate and Annie...Annie is the one who does an awesome job of keeping
the whole floor spic and span clean.

Nurse Christie...carrying Kate out of room 2010 and into the real world! "Look mom....no monitors!"

Sun and Wind On My Face Again!



What a beautiful day for a walk this afternoon! We bundled Kate up and we all took a walk down to feed the fish and around the big lake! It was wonderful. Kate loved it...and just looked at everything. Isn't it so nice to see a picture of Kate with nature behind her....not a bunch of medical machinery.

Kate has had a pretty good day...she is definitely an afternoon/evening girl! Could it be that she didn't go to sleep until 3 am? She would fall dead asleep in my arms...but would cry like a madwoman the minute I laid her in her crib. Evidently...her room wasn't loud enough...cold enough and bright enough! I even called the PICU at 2:30 a.m. and teased them about what they did with my baby in the wee hours of the morning?

She still could pick it up a little in her eating...she definitely does better when we are all sitting around the table together...but needs more calories in order to really start growing! That's our challenge for the next few days.

Otherwise a pretty good day...she still is a little (okay, a lot) needy and wants a lot of attention from mommy and daddy...but that's okay...we are just so grateful that we have her right now to love on!

The Mother Ship Has Landed!


There it is...our little tank of oxygen! I guess it hold like 75 lbs of liquid O2...seems a little extreme for the tiny tiny wiff of air Kate is getting. When we put the cannula up to our nose...we can hardly even feel it.

So...today, the Respiratory Therapist came out to show us how to use it and how to fill our smaller portable tank. He has encouraged us to use the "big tank" when we are home as to minimize waste from the smaller tank. So...we now have 50 feet of tubing running throughout our house! We're not quite sure how this is going to work out..especially with a 3 year old also..but we're willing to give it a try.

The ironic thing is that once we fill the portable...he told us we should go ahead and finish using up the O2 in the portable tank...and right now, as long as the weather is nice...I'm sure we'll be leaving the house for walks everyday....and the portable holds about 20 hours of O2?? So...do we use the portable or the big tank...and just to add...this portable tank isn't the MOST portable thing I've toted around...especially with a fragile baby in my arms also!

Hmmm...sounds a little too confusing to me. I'm just glad with the amount of O2 she is getting we have plenty and don't have to worry too much about waste and running out of oxygen.

Friday, September 14, 2007

Home Sweet Home

I think we officially left Indy around 3:10...just in time to catch the start of Friday night rush hour....it's crazy...I don't know how you people in Indy deal with that everyday. We were greeted at home by Seth, Art, "Reen" and Nana...it was so great to see everyone. Oh yeah...we were also greeted by a giant tank of oxygen...I"ll have to post a picture tomorrow...I have NO IDEA where we are going to keep this thing. We have a portable tank that we can carry over our shoulder that needs filled every 20 hours or so...filled from the "mother tank."

We've had a great night so far...thanks to a ready to eat meal (Thanks Kricks). We played and played, took a "REAL" bath and read stories....all those "mundane" things that just seem so wonderful and new right now...especially with all of us together.

Seth is glad to have us home...and has been great with Kate. She is doing well and responds really well to Seth. They really play well together. She is SO much better than the few days we were home before...so it is great to actually have her playing and reacting to "HER" environment.

We are still on a "funky hospital" schedule...not quite sure when Kate is planning to hit the sack....I'm gonna miss you wonderful night nurses who rocked her to sleep (and did the 4am feeding) to let me sleep!

So..it's great to be home and hopefully for a while! I will post pictures tomorrow...as it is late...I have unpacking to do...a toddler who just went down...and a cranky baby.

Again...thanks for all the prayers lifted up on behalf of Kate that has allowed us to get home....it's cliche'...but it is Home Sweet Home.

We're Waiting!


It's 1:30 and here we sit waiting...waiting...waiting...waiting for final discharge orders and the portable oxygen to get here. I have just put a bug in our nurses ear and she is "on it!" Silly us to think we would get out of here this morning. I all know..it better be before rush hour picks up!

She had an echo this morning...doesn't look like there is much change...YET! The cardiologist today expressed concern about her residual VSD and his opinion is that it will should be fixed sooner than later...not soon enough to hold discharge, but possibly in the next few months. We by no means want to put her (or us) through another surgery right now. More than ever, we are anxious to get a report from Ann Arbor to hear what they think. We know we have a long long road ahead...but right now, we just want to get Kate home and enjoy the time we have.

Christie is here now to go over meds with us...hopefully soon we'll be out of here...the wagon is loaded and we're ready!

Kate and our favorite Chaplain...Julie. She has prayed lots for Kate and us!

Kate and daddy....getting in a quick nap before the ride home!


Love to all
Krista

Thursday, September 13, 2007

Care Conference Update

Our Care Conference was overall pretty uneventful...it was about an hour long and everyone was even in the mood to throw in a couple jokes.
People in attendance:
Dr. Parikh (Cardiologist)
Dr. Rupple (Intensivist)
Sarah (heart center NP)
Jessica (Kate's nurse)
Case Management and Social Work

Dr. Parikh did most of the talking...basically overviewing her heart condition: she has 3 major issues right now:
1. Leakage in the tricuspid valve
2. Stenosis (narrowing) in her pulmonary arteries
3. Pulmonary Hypertension (high pressure in her lungs)
Any of these could still improve and if so, could indirectly affect one of the others making another better also. We will know within the next few months. If things don't improve, then we would then discuss the next option which would probably be surgical repair of the tricuspid valve...but we will worry about that if that time comes. He will let us know as soon as he hears back from U of M...as to when and if they want to see her....that should be early next week.

There was a little debate about when we could go home..there was talk of getting her out and about more through the weekend. We spoke up and said we were comfortable taking her now...nothing has been done through the week. We know what to look for and will much on top of the game if something were to happen again.

We had a long talk about the term "congestive heart failure" Dr. Parikh told us that was a term from the 20's. It is scary because the word failure is in it..but it doesn't mean the heart will fail or stop..just that it is failing to do it's job. He made the comparison that to every person it means a different thing and if Payton Manning had Congestive Heart Failure, he could still probably do more than we could with our hearts as they are...it is all relative as to what each individual's heart is used to.

So...the plan...GO HOME TOMORROW MORNING. We have to get the home oxygen arranged...but other than that...we should be good to go! YEAH! PRAISE GOD!

Yeah, we're going to be a little scared for a while....yeah, people might "stare" at her oxygen and little kids might ask what's wrong with her? We might have to be a little cautious and not go to the germ infested places. But...we just hope and pray that over the next few months...things will get better and she will get stronger.

She is eating okay...they assure us that will get better once she is playing more, in a home environment and utilizing more energy....it can be pretty draining around here. I'm sure we will be at the pediatricians office weekly for the next few months.

So...Andy and I are pretty excited. We're gonna head out for ice cream to celebrate! We've got a long road ahead....as she still needs a lot of care...but we can do it...THANKS TO A LOT OF YOU!

Wednesday, September 12, 2007

Out for the Count

Two signs Kate is out: no paci and arms spread! She took a great nap this afternoon!


1st of all...so sorry I have been late in updating...I know you are all anxious to hear how Kate is doing. She is doing fine...it's just been a busy day....amazingly busy for the lack of activity regarding her care.


She continues to gain strength and eat. Her weight is fluctuating...up one day, down a little, up a little. She is at the minimum calorie intake so they found this stuff called "benecalorie" that has 300 calories in an ounce of liquid....you just add some to her food and milk. It says it is tasteless and so far she hasn't appeared to mind it...hopefully that will give her that added boost she needs to get over the hump and start gaining again.


It looks like we might be headed home real soon...they are working on all the discharge stuff like getting the oxygen set for home, setting up a home medicine schedule. We still have our meeting tomorrow (Thursday) and will chat with several doctors. I guess the records have just been sent today to U of M, so I don't know if we will have any of that info before the meeting.


Andy is coming down tomorrow early afternoon....I am anxious for him to see Kate as she has a lot more personality than she did last week....plus I haven't seen him in almost a week either. Please continue to lift his dad, Larry, up in your prayers as he continues the fight with bone cancer...Andy really has his plate full right now...prayers for peace and comfort for him too!


We're still not trying to get our hopes up...things change so fast around here...but right now things are looking pretty good. One of the Intensivists came in tonight and wished us luck if he didn't see us again and told us Kate is one of their favorite patients....so glad she is loved...just a bummer we had to be here long enough for everyone to fall in love!




Yesterday, her nurse Mandy, brought her in a purple bow to her hair...she looks so cute!

Kate with her washcloth and toes...who need toys?

Tuesday, September 11, 2007

Tuesday Top Ten

Kate continues to show a little bit of progress each day with a just a few tiny bumps along the way. It's been pretty calm today...but just a couple of the highlights...9 good and just 1 bad!!!

1. She took a 7oz bottle this morning...more than she has even taken, even before surgery. Now...she hasn't repeated that...but still...that was an exciting start to the morning.

2. Dietary came in and she is doing okay with the "official calorie count" She needs 850-900 calories a day and yesterday she took 840! That's good news...plus today she told us about a couple calorie boosters we can add on those "bad" days. I was expecting it to be much worse!

3. She was up .1 kilogram...about 3 ounces or so....and that is just in 1 day. At least we are on the right track.

4. Mommy got a break today and pampered herself with a pedicure...it was nice to just sit back and relax.

5. No doctors reports or changes to any of her meds...she remains stable. She just has a really high mortgage payment right now for her choice of living conditions.

6. She was a little gaggy during dinner tonight and lost some of her dinner...so Gayle and I are headed out for a quick bite and then will try again when we return.

7. She is sleeping well...soundly for 8-9 hours. That is good news if we are thinking of coming home.

8. Our care conference has been set for Thursday at 4:00 p.m....all of our choice doctors will be there!

9. We got a very nice package in the mail today from Aunt Amy's work...snacks, games for Seth, toys for Kate and a very generous gift for mom and dad! THANK YOU PATENT AWARDS.

10. Auntie Gayle took her on a wagon ride and has been quite the entertainment for Kate...they are constantly giving each other raspberries.

Love to all!

And Now A Word From Seth

Just thought I would share some pictures of Seth's antics with Art & Maureen...sure looks like he is having fun.

Seth and Snake...his newest prize from Tokens & Tickets...rumor has it a trip to the hardware store for some wood glue was in order to fix Snake.

Watching for fish at the lake
Picking out doughnuts for EVERYONE...even mommy got a muffin!
Enjoying his special blue doughnut....gross!

Monday, September 10, 2007

Amazing Love Of God....mathematically speaking!

Now, take a look at this...101%

From a strictly mathematical viewpoint:
What Equals 100%?
What does it mean to give MORE than 100%?
Ever wonder about those people who say they are giving more than 100%?
We have all been in situations where someone wants you to GIVE OVER 100%.
How about ACHIEVING 101%?
What equals 100% in life?

Here's a little mathematical formula that might help answer these questions:

If: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
Is represented as:
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26.

If: H-A-R-D-W-O-R-K
8+1+18+4+23+ 15+18+11 = 98%

And: K-N-O-W-L-E-D-G-E
11+14+15+23+ 12+5+4+7+ 5 = 96%

But: A-T-T-I-T-U-D-E
1+20+20+9+20+ 21+4+5 = 100%

THEN, look how far the love of God will take you:
L-O-V-E-O-F-G-O-D
12+15+22+5+15+ 6+7+15+4 = 101%

Therefore, one can conclude with mathematical certainty that: While Hard Work and Knowledge will get you close, and Attitude will get you there, It's the Love of God that will put you over the top!

Kate and Her Drum

Kate just loves her little drum...she just bangs and bangs on it! Seth actually got it for his 1st Christmas...but he never really like it! But Kate LOVES it...she dances to the annoying music...I know it plays B-I-N-G-O, Hush Little Baby & This Old Man...it's enough to drive anyone crazy!

(Note...the slideshow will replay after the ad at the end...didn't want to have to pay $$)

Everybody's Praying For Kate

....even Kate said her own prayers last night....how cute is that!
Again...more amazement as we continue to get emails and comments from strangers who are praying for Kate and our family! What an impact Kate is making in this world...even being confined to room 2010! Thank you to everyone...loved ones and strangers who are keeping us in their prayers and spending time to read our blog and are laughing and crying with us.
Mommy and Kate getting some fresh air and sunshine yesterday! What a beautiful day to take a walk! She was looking good yesterday, and everyone kept asking if we were going home! Soon...very soon...I pray!

Stress Level??

Well...I guess, Kate really isn't stressing me out tooo much! Just imagine if this was your kid? I think I can handle a couple days of not eating!!!
And I thought Kate was a pin cushion after all her pokes and prods!!

In The Works

That's seems to be the theme of the day...lots of things are "in the works"

1. We are getting our Care Conference set up for Thursday where we hope to get a consensus from all the cardiologists and intensivists. We are hoping for some more answers by then...who knows?

2. We are having the cardiologists send her reports, echos, cath and info to U of M at Ann Arbor. Rumor has it they have a reputable program and we are anxious to get a 2nd opinion. If they think they can do something or have some positive new for us, we will work on getting her transferred up there. That sounds really scary and awful...starting all over again at a new hospital, but at the same time...if they can help little Kate...we are all for it.

3. We are doing an official calorie count and keeping track of all she eats. She is far from getting the minimum she needs, but she gets closer everyday. I guess on Thursday we will take the info we have and make a sound decision if she will need a G-tube to help with the extra calories and food she needs. She did take 5 oz early this morning for the nurse...the most she has had in days.

4. The intensivist is working on getting some info from the cardiologists as far as their plan...if they could somehow come to some sort of consensus. That is frustrating for all of us, as we don't know a 'Plan"

5. She is in ICU because they are having a hard time letting go of her and passing her off to a whole new team of hospitalists upstairs who don't know her case and history. I guess that is good, that they are that genuinely concerned for her care. I guess this is typical for sick kids who have had a difficult case management. She is not in NEED of intensivist care...she is just getting the better care. I think if we lived closer, we might have been out of her earlier, but there is the 2 hour commute that makes the doctors nervous, in case something extreme were to happen....again!

So....we wait and see. Kate is awake and ready to eat...I'll post a couple pictures in a little bit!

Sunday, September 9, 2007

LEAVE ME ALONE...I'M EATING

So we think we have made a pretty good discovery/realization. Kate doesn't eat well when there are "people" here in the room distracting her. This morning, it was a speech therapist making a big to-do! This afternoon, she was eating fine until a nurse came in to chat...and she stopped. Everyone has good intentions...we just think it is too distracting. So...we have a new sign for the door and will try to keep people out of the room while she is eating.

She did eat better than she has in days this afternoon for lunch. She took 3 oz of milk plus 6oz of peaches and a little ice cream. YEAH KATE! It's still not enough to make her really grow...but it is better...and that is all we can ask for. We are doing an "official" calorie count in order to see how much she is really getting.

Overall..her spirits seem a little better today...other than the fact that she really needs a good "poop"....she seems to be in some stomach pain. She has gotten more medicine for that and hopefully, it won't be too much longer before we have success. Her puffiness and breathing have not been as bad today.



It's a little bit more of an encouraging day today...but we know the road is still very very long. We are working toward that Care Conference on Thursday when we can figure out how we can get her out of here!

Seth has spent the last 24 hours with Grandma & Pampaw...having fun as usual. Andy is picking him up now and will stay with him in the Fort until Wednesday or Thursday morning. Our wonderful nannies, Art and Maureen will be back this evening from a weekend trip to Michigan for their daughter's wedding shower. Gayle came back to spend the next few days with me and mom will be heading back either tonight or in the morning. Once again...Andy will try to get a few days of work in!

Such a BIG girl...Kate discovered she like Nana's juice in the BIG cup!

Not as good as the real thing...but Kate still enjoys playing in her bath water

Saturday, September 8, 2007

Engima...

1. something that baffles understanding and cannot be explained
2. a difficult problem

Well...this has been the word that describes Kate's condition! Nobody can explain it...Nobody understands why her heart is not working like it should....and it is definitely causing a difficult problem.

Kate has been a little bit better today. She has eaten a little bit better. Her puffiness is a little bit better. With Kate...it is just such a roller coaster. This morning, she looked really bad, had no energy, slept a lot and was really puffy. This afternoon....she looked better, is sitting up and dancing to her bongo drum and actually took some baby food. She just sends my emotions all over the place.

We are in the process of setting up a "care conference" with a cardiologist, surgeon, and intensivist. I truthfully don't think we will get a lot of answers to the questions we have...but at the same time, it will be good to get everybody in the same room to answer some questions. One big question we have is whether to transfer her to UofM for a 2nd opinion and the other is how we get her home the quickest. We think it will be Thursday afternoon...maybe by then we'll have more clues as to whether the extra lasix is doing the trick or if she continue to decline or have problems.

It's definitely a scary time...especially when you hear "chronic congestive heart failure"....you just continue to ride the roller coaster....crying one minute....laughing with Kate the next! Mom is here with me now as Andy is home with Seth and getting some home chores done.

Love to all!

The Right Medicine

Thank God for modern medicine...evidently the Lasix did the trick. Kate looks tons better and ate 5oz of milk tonight....which is almost as much as she has taken all day! Thank you Jesus...sure will make me sleep a little better this evening. It amazes me once again...how quickly Kate rebounds, once she is given what she needs! Thank God for little miracles...we need lots of those....and a big one would be fine too!!

Friday, September 7, 2007

It's A Heart Thing

We've had a little bit of a rough day today...Kate has not wanted to eat. We had a speech therapist come in and she doesn't think it has to do with her swallowing or eating skills. Her heart is just not clearing off enough fluid and so she is constantly out of breath which just makes it really hard for her to eat. It's an appetite issue. She feels like crap and just doesn't want to eat.
The doctor on this evening ordered some extra lasix (diuretic) to help clear some of that fluid off of her lungs. She has perked up a bunch this evening and appears to be feeling better...waving at everyone on her walks.

Days like today are pretty hard...it's hard to see your kid refuse to eat...when you know she needs nutrition so desperately...and no matter what you do or say....SHE ALWAYS WINS...you can't make her eat. Except..Nana had a little bit of success with Haagan Daaz Vanilla Swiss Almond ice cream. Her eating is significantly down today and she lost some weight again.

Andy went home again this afternoon, in an attempt to spend time with Seth and do some work preparation. Nana came down this afternoon, as I really don't want to be here by myself...that is when the bad news seems to always come.

So...the long long road continues...we pray pray pray that today was an exception and the lasix will do the trick to help get off that fluid. We are anxious to have another good talk with a cardiologist, but know that probably won't come until Monday.

Her heart is just not keeping up....it's working so hard...but right now, it isn't enough. We desperately need your prayers right now....it's a tough tough day and night....so hard to see your child suffer.
Kate with one of the only 2 things she wanted in her mouth today...her paci or a washcloth!

How Long?

I've got this burning question just bombarding every aspect of my life? I'm in a constant wonder of "How Long?"

How long until we leave the hospital?
How long will I worry about Kate's breathing and eating habits?
How long until we get the next doctor's report?
How long until I see Seth?
How long will I cry myself to sleep at night?
How long will Kate's heart last?
How long until her heart gets better?
How long do we have with Kate?
How long do we wait to call the doctor next time she gets sick?
How long will she have to wear the oxygen?
How long until she crawls? walks? talks?
How long until another hospital stay?
How long shall I try and give Kate a bottle?
How long should I try and make her eat?
How long should I let her cry?
How long till her breathing rate slows down?
How long will I be in constant fear?
How long will I be sad?
How long till we will have a "normal" happy summer?
How long until another echocardiogram?
How long will I be scared?

I don't and probably won't have suitable answers to any of these questions...at least not answers that will satisfy my "need to know!" And as I think about it...do I really want to know the answers to these questions? Sometimes, I think YES...but then I get a reality check and realize answers won't change reality. Reality is what it is..and somehow I just have to learn to deal with it.

I got the sweetest email from another stranger who found our story....they are also battling life with a young child with congenital heart disease and have had several surgeries here at St. Vincent. I was encouraged by something she said:
There were times when I would just cry and tell my mom "I can't do it. I can't do it" and she would look at me and say "Jean, You ARE doing it." and that's what I would say to you...You ARE doing it. Whether you think you're making it through or not, you ARE.

So...I will continue to have lots of questions and I think I will always have an extra yearning of "how long" with Kate. She is just special in that way. But...I just have to do it...I have to go on with life and enjoy Kate for who and what she is. Andy and I were talking last night about the impact she has already had in her small life...and obviously, God has some big plans for this little girl since He has brought her through so much already.

Yeah, I think I still have a lot of crying left...a lot of worry left...a lot of questions..but isn't that what makes me a mommy?

Until then...I look toward some scripture to give me the comfort, peace, courage, guidance, hope, mercy, patience, and wisdom that I so desperately need right now.

For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:3

The LORD is good, a refuge in times of trouble. He cares for those who trust in him . Nahum 1:7

Lord...help me to trust you!

Thursday, September 6, 2007

A Woman's Work...

Is Never Done!
So...life isn't much different...even when you're in the hosptial. We had to laugh tonight...as Kate and I took wagons rides up to the 3rd floor to do laundry while dad watched the game. Kate is loving getting out of the room and just looks at any and everything as we tour the halls. She waves "byebye" to people as we pass by..she loves her walks.
Have a great night