Friday, November 30, 2007

The Smallest Prayer

God hears the very smallest prayer,
Nor sends a cross too great to bear,
And though we stumble now and then,
He always picks us up again.
There is no moment day or night,
When we are hidden from His sight,
No wall too high nor door too stout,
To keep His loving care without.
His ways are wiser than our own,
His strength remains when ours is gone,
We must not doubt nor question why,
He sends the answers by and by.
And this I know within my heart,
All darkness fades and shadows part,
And that sometime, somehow, somewhere,
God sees and answers every prayer!
~~Grace E. Easley

Though our burden with Kate seems HUGE right now to us...it is SMALL in the eyes of God. He is so ABLE to answer those prayers...and we have HUGE prayers for her heart and her health. But the awesome thing about God....even the SMALL prayers (in our eyes) are HUGE to HIM...the prayers that she'll poop...that she will take her food...that she won't get bored...that we will keep our private room...that I won't get snowed in this weekend....etc.

So...hopefully, over the next 11 days...we'll have lots of those daily "small" prayers...with that looming "HUGE" prayer for a fixed heart after surgery...no more MAJOR DETOURS in the next few days. I'm hoping that the next 11 days will stay 'status quo' and we won't be making lots of changes...that's OUR plan anyway.

So...hopefully the BLOG won't be boring....I'll keep stretching my creativity in giving you something to check in on. We're off of "droplet precautions" which means when her IV meds aren't running...we can go for wagon rides...that'll be great to get out of the room. But for now...keep in mind...no news....is good news!

Love to all!

Nene's in the House!

"Nene"...aka Gayle...aka awesome friend...came up to stay with us a few days. What a blessing to have her here with us. She has been a great help in managing Kate's tubes and wires...reads her books...takes me to dinner...and just keeps me company. I really appreciate all the times she has come to just "sit" with me and Kate. We love you Gayle!!

Not much new to report today. She had two small retching sessions..but they were very mild. We are trying to get a little more "water" in her...as her formula is SO calorically dense and thick....we are still trying to expand her tummy and get it used to more food.

She has been smiling girl again today...sitting up and playing. She tires easily...a definite sign of her heart failure. They didn't change anything today...just allowing her time to heal, get stronger and clear those lungs.

Thanks for your continued prayers during our little "Time of healing" Right now...the 11th just seems an eternity away...but it will come.

It's beginning to look like the holidays are approaching...the RMH got lights put up today as well as their tree. Nurses are beginning to wear there "Holiday" scrubs. I'm anxious to see how they decorate the hospital. Seth is anxious for me to get home so we can decorate...he loves to get up in the attic...and the only time we let him is when we have seasonal stuff to get or put away. He and Andy are doing great....just being the guys. Tomorrow...they are headed down to see his dad...who is home from the hospital...but still very weak. Prayers need sent that way too!

Thanks all you prayer warriors...we couldn't do it without you! Love to all!

Thursday, November 29, 2007

Surgery...Re-Scheduled

Well...we got the news of the new surgery date: Tuesday, December 11! YUCK! That is SO far away. We have shared our dissatisfaction with waiting this long...but we also understand their point of view: Basically: they want her lungs to be in the "best shape possible" before undergoing surgery! We do appreciate that! Since her antibiotics don't end till Sunday/Monday...they don't want to jump into surgery next week. That leaves the following week..the 11th!

Maybe...waiting a week before surgery to improve her lungs and going into surgery strong...will save a week after surgery with recovery. We will stay in the hospital until surgery so that they can regulate her fluid ins and outs. She is in deep enough heart failure that she needs the IV lasix and meds to keep the fluid off of her.

It's a yucky situation. We would like to proceed with surgery sooner so that we can get home, be together and maybe have even spent Christmas at home. At this point...it looks like we will be celebrating here in Michigan. I keep reminding myself...it's only one year...and bringing home a healthy kid with a healthy heart will be the best present ever!!! Andy already has some great ideas of how we can still make it special and fun this year.

So...we will re-vamp and re-plan. We have to do what is best for Kate..and what is best for her heart & lungs. My fear in waiting is that it is just more time for her to develop/catch some other nasty bug...but staying in the hospital...hopefully we can stay on top of that.

So...that's what we know...Her IV went bad so they are coming to put in a new one...seriously...the kid is desperately running out of places to stick! Love to all.

Wednesday, November 28, 2007

Afternoon Matinee

And now...for your viewing pleasure...our feature presentation:

A Girl & Her Washcloth

I know I've mentioned Kate's love of her wet washcloth before...but thought you might enjoy seeing what it is all about! She's not teething...as she has all her teeth (that's one area we are actually ahead of the game in). Not sure why she loves it so much...my thoughts now are that her throat may be sore from coughing and the cool water she sucks out of it might feel good! But...she loves it at home even when she hasn't been coughing....Regardless...I think it is a riot! She cracks me up!

Okay...now life is good! Kate is getting back to her absolutely ADORABLE self...and now we finally have the nurses coming in to say "Hi!" and comment on how great she looks...and how CUTE she is! Kate is beginning to warm the hearts of the staff here...just took her a few extra days!

Just a little something....

to brighten your day!
Kate slept hard all night. She had some " breathing, coughing issues" this morning around 8...but basically it all came down to the fact that she is coughing up and loosening up all that "gunk" in her lungs. After a good suctioning she was good to go. She has been sitting up, smiling at everyone who walks by and playing with her toys! No retching all night!!! YEAH!

Tuesday, November 27, 2007

"Zonked"

I'm back at RMH. I just put in some laundry down in the laundry room...the good thing...I can do all 3 loads at once! So I have a hour or so to relax and update the BLOG


Just a few things about our Ronald McDonald House

1. It has 29 bedrooms...with 2 twin beds, a small closet and dresser
2. We share a bathroom with one other family
3. We have a small chore to do daily..so far we have cleaned up trash in the parking lot, swept
the dining room and cleaned the laundry room
4. There is a huge kitchen...we each have cabinet & fridge space.
5. Community groups come about 4-5 days a week and cook dinner....for FREE!
6. There are several "community rooms" including a formal room, rec room, giant tv screen room, computer room, play room!
7. Seth can stay with us whenever he comes up to visit....or anyone else for that matter as long as a parent or grandparent is here.
8. Now that we are in...we can stay until Kate gets discharged.
9. It costs $10 a night...not bad compared to hotel rates
10. They have free parking!
11. It's only 2 blocks from the hospital...a nice energizing walk in the daytime.
12. Security will pick me up at night and bring me back from the hospital when it's dark.
13. Free laundry!


It's been nice so far...a nice place to "unpack" and get settled. We haven't had the opportunity to meet too many people...as we have been spending most of our time at the hospital. It's really has been a huge blessing...and again...a blessing at just the perfect time! I guess sometimes..it can take weeks before a spot opens up!


But...I'm here by myself tonight with my family spread out over 2 states...with the radio on Christmas music! Just setting myself up for some "sad" feelings...but overall...it's been a great day! Kate has not retched AT ALL today! That is just huge to me today! Plus..just to see her smiling...melts my heart! Andy and I were talking today...here we are bringing her back to "normal" and getting her strong again...only to set her back next week!


Well...I"ll leave you with how I left Kate tonight! Have a blessed night...or day...depending on when you read this.

Stand Up...Stand Up

So..there's this Veggie tales song that says:
"Stand Up...Stand Up...For What You Believe In...." Although it continues to talk about standing up for God (cause He's the One to Back You Up)....I feel that has been my "theme" of the day.

Sorry to keep you "guessing" or worrying all day...generally...no news is good news and probably means Kate is feeling better and demanding more of my time. That has been the case today.

The "battle" of the day though has been her feeding. As of last night...we decided to go with the "ounce an hour" formula. I fed her orally up until 11 when they hooked her up to continuous feed through the night. Andy and I headed back to RMH to sleep.

When we came back...there was much debate about what changes to make to her feeding schedule. I asked if she had retched...and the answer was only once. YEAH! But..there was talk of taking her off of her current formula and changing it, putting in a NJ tube (a feeding tube that bypasses her tummy and goes straight into her intestines, putting her back on continuous feeds all the time!

Well...I stood up...stood up for my little girl. They wanted to change her formula because they thought it was too rich for her and causing her to retch. I was quick to (re)-inform them that she retches on apple juice and sometimes when she hasn't even eaten in a while. Her formula is NOT the cause....plus with this formula...she is finally getting enough calories to GROW! Then they wanted to place a NJ tube...but I asked why? She has only retched once since we started the ounce/hour plan...why? They had no significant reason...at least in my book. I just kept telling them she was handling this schedule better than anything we have tried so far... don't they learn: "If it ain't broke, don't fix it" in med school?

So..after talking with the intern, senior resident and cardiology fellow...I finally convinced them to leave well-enough alone and leave things as is. Of course...if things change, which Kate is known to do, we'll address it at that time...but for now...let's try to give the kid some routine.

Taking her current formula which has 45 calories/ounce...she will meet her calorie need for the day. However...since it is more calorie dense...she is short 2 1/2 ounce of liquid to stay hydrated. That had some "in discussion" I suggested giving her an ounce of apple juice 3 times a day! Genius!!! So that's the plan. Not to boast...but my 17 months of parenting Kate are FAR more informative than 12 years of med school! I'm glad that they are open to listening to me...and further more...trying my suggestions.

So...now the orders are strictly written: oral feed an ounce every hour...unless she is "sacked" out then...pour it through her tube. We will continuous feed an ounce/hour from 10pm-6am. Then...if she continuous to tolerate this, we'll move up to maybe 2ounce/every 2 hour...then maybe 21/2 oz every 2 hour...etc.

Hopefully...all of this is just until surgery...then her heart will be fixed...will work efficiently and all of these feeding/fluid overload issues will be a moot point! That is our prayer for the week.

Andy has left again..to spend a few days with Seth...so it's just me again! Kate is prone to "act up" on my solo clock but we have had a strick "talkin-to" She has made huge strides today: smiling, wanting to play, batting her new balloon and chewing on a washcloth. Overall..it's been a good day.

We were blessed by our Pastor, Chuck visiting today. He treated us to lunch (Thanks), prayed with us and for Kate and just overall encouraged us in our journey! Thanks for making the trek up North!

So...that's about all...sorry for all the jibber-jabber...in some ways, this BLOG is also my diary of Kate's care so that I can keep track of the plans! It's almost 6....time to give her a feed! Love to all!

Praise of the Day: Kate has retched only once over 24 hours!

Monday, November 26, 2007

INSANITY

That's all this is...and that's what's going to happen to me before all of this is over. So we move back to the floor out of ICU. We rest a little and then they give me the bottle to feed her at Noon. She takes it great....but then...starts retching. Retching worse than she ever has before...for longer than she ever has before. Her heart rate shoots all over the place, she spikes a fever of like 101...she's crying.


So...we call in the docs...and the only thing they can figure out is that she just got blood and took a really good bottle...so maybe she is fluid overloaded. It's just crazy...she was perfectly fine the past 24 hours...then all of this again! They did some xrays and all it seemed to show was a lot of air and stool in her tummy.


Since then...she has passed a lot of gas...had several poopy diapers and is now resting comfortably. But...obviously the feeding is the issue here. So...we are going to try plan 483...we are going to try and just give her an ounce every hour orally (since she really WANTS to eat) and see if her body/heart can tolerate it! And evidently...she is one of those rare kids who retches after the Nissan...of course...does anything come easy or go the right way for Kate...NEVER!


So...Andy and I are pretty emotionally worn out right now...it is so hard to see your kid sick and be in a hospital..and have "them" stumped as to WHY she is doing what she is doing and HOW they can fix it. Before long...she's going to be a perfect case for the tv show "House!" Where is he when you need him?

So...prayerfully plan 483 will work...if not...we'll move onto plan 484. Unfortunately...I don't think any of these "plans" will work until her heart gets fixed!

Okay...fast forward 2 hours...my friend Karla came to visit before I posted this. Things are going better. We gave her an ounce of Pedialtye and she did fine with that. Her breathing and and sats have stabilized. She is resting peacefully. She is still poopin' up a storm...gotta love those antibiotics for "cleaning" out the system.

I'm going to feed Kate her 1oz at 5 (now we're going to mix 1/2 Pedialtye and 1/2 formula and then Andy and I are finally going to get some lunch...I mean dinner. Such is the life in the hospital. Just givin' you a glimpse of a day for us...it's such a roller coaster...and we've

got another 8 days of this!

Have Bed....Will Travel

Kate is on the move...luckily this time...back to the regular floor. We got back to the PCTU just in time this morning for us to accompany Kate back to 5E. We are in a private room...since she has some sort of respiratory virus going on.


She had a really good night...ate really well...slept. They did have to give her another blood transfusion (total of 2). I hate that she has to get blood...BUT...it helps her out tremendously.

So...we're in room 5533. Our direct phone line into our room is: 734-936-3468...for now at least. But...I suspect we'll be here for the next 8 days stretch before surgery. As far as mail...it can be sent to the RMH too...as that will be consistent and Kate tends to move from unit to unit.
That address:
Andy/Krista Layman Room 22
c/0 Ronald McDonald House
1600 Washington Heights
Ann Arbor, MI 48104
Voicemails can be left there at: 734-994-4442

So...we're just hanging out today...hoping to get some catch-up sleep and watch Kate's personality come back.
Here are a couple pictures from yesterday!

Dad giving Kate a bottle of Pedialtye...she was lovin' that! That was just before they put her on "droplet precautions" which led to:Mask, gown and gloves! Nothing stinks more than having to wear all that garb just to be within 3 feet of your kid. I understand...there are a lot of compromised kids in ICU and not knowing for sure what is going on with Kate...they have to be careful....but it still stinks. Today...there is a bunch of controversy around all of this...whether she has to have it since everything has come back negative. At least now... on the floor, we can be in her room without being robed up!

I need to go to bed!

Just a quick update...as it is late and I need some sleep. Andy and I are both back at the RMH. Kate is still in ICU..but plans are to move out tomorrow. She has drastically improved throughout the day. She did get a blood transfusion...and it amazed us how much pinker she looks. She was only allowed Pedialyte all day....which she sucked down in no time flat. We finally asked to see the doctor to ask about her nutritional plan. Once we told her she was doing great with feeds...she said...sure..you can feed her! Sometimes, I wonder if we don't ask and advocate for our kids...how long it would take them at times.

So...she got to start with 1 ounce of her formula and 3 ounce of Pedialyte. She took it orally and wanted more. Tonight...her nurse will slowly increase the formula and decrease the Pedialyte. She is taking all her nourishment by mouth now...so she is definitely feeling better. She is still pretty tired...but has been awake much more today watching The Wiggles...I guess in tribute to her brother. The nurse tried to put on Barney and she cried until The Wiggles came back on. She fusses a little when we leave...a definite sign she is getting better.

Well...that covers the basics...will post pictures and more info tomorrow when all I have to do is sit and wait! Love to all!

BTW....there was the most beautiful snow fall tonight up her in Michigan! Gorgeous!

Sunday, November 25, 2007

Yellow Flag on the Field

Kate's been charged with "delay of game" The "official" word now: Pneumonia! And the policy...10 days of antibiotics and VERY STRONG lungs before they would proceed with heart surgery! WOW! So...we'll just have to play it by ear and see how strong she is and if she will be able to have surgery in 10 days...or if we will come home for a while. Part of me just wants this all over with and just do the surgery...and if we have to...celebrate Christmas late or even in our little RMH room. We'll see what the next few days brings.

Kate's night in the PCTU...yep that's a new one (Pediatric Cardio--Thoraic Unit) went fairly well. When I came back around 9:30 after doing my morning chore at the Ronald McDonald House...she looked TONS better. Her breathing has slowed down and she is back to 1/4 liter of oxygen instead of 2 liters.

The plan for the day is to give her some blood, since she is anemic. Get her 3 antibiotics regulated and let her rest. She is allowed to have Pedialyte orally...and she is sucking that down in no time flat. So far...no retching.

Andy is back here with us now...he drove back this morning. I am going to run some errands and get us all set up for the house. I guess we had a little divine intervention in that we got the RMH room yesterday...and then we got moved and had no place to sleep. Even in the midst of trials...God is watching over us.

Our verse of the week:
"Blessed is he who waits." Daniel 12:12
We should have lots of "blessings" coming our way...cause we are doing LOTS of waiting!

Moving Again...

Evidently Kate isn't happy anywhere! I toughed it up...packed up my stuff and headed to the Ronald McDonald House to get some sleep...since the only sleeping option in Moderate Care is a hard wooden rocker. It was hard...I can count on one finger the number of times I've left Kate (not including the NICU) overnight without family in the hospital. I had unpacked and was getting ready to get on my jammies...when the phone rings!! UGHGH! Heart skips a beat....maybe it's Andy calling again to say goodnight....nope I see the 734 area code.

And....it's the cardio doc...he assures me Kate isn't getting worse...but with all of their treatments...she isn't getting any better either. They did a blood gas...and it was still okay..BUT...they are moving her to ICU....Just in case she were to poop out and decide this breathing thing is too difficult...they could easily intubate her. I keep asking if they think they will have to...and they don't think so...so far! But...Kate...she changes everyone's minds pretty quickly.

So...I ran out the door...called Andy and headed back to the hospital. Now...we're just waiting for them to rearrange beds so that they can get her in isolation. I don't know if I can muster the strength to leave her again tonight...so I may be finding a couch in a lounge somewhere.

It's crazy...I wasn't expecting this ride at all...I guess we weren't overreacting when we decided to go ahead and transfer her here to UofM.

Saturday, November 24, 2007

Kate's At It Again

Kate is up to her old tricks...throwing the staff for a loop and stressin' out mommy! I returned around 6ish from checking into the Ronald McDonald House. I picked her up to give her some apple juice and she felt warm. I asked for a fever check...and wouldn't you know it...she had a temp of 102.6! And the circus began...in come the docs...in come the vampires to draw more blood to send to the lab...in come the nurses to urine cath her...in comes the RT to give her a breathing treatment...in the come the extra nurses to ask if I they can help...in come the nurse to try and console a crying mommy...in comes another cardiologist for a 2nd opinion.

The result: her blood gas is okay (her lungs are keeping up with her fast breathing and getting the CO2 out)...her chest xray is a little worse (showing a little more fluid on her lungs)

The plan: get her fever down with Tylenol and Motrin....continue to give her more diuretics to get the fluid off...start 2 broad range antibiotics to battle anything that may be growing until cultures show or don't show anything...move her to Moderate Care where they can watch her more closely. So...in the next few minutes...we're moving down the hall to Moderate Care...all I know is that is is a bigger room with like 3 patients and 2 nurses who stay in there all the time. Not sure what that means for my sleeping arrangements...but glad they are going to keep a closer eye on her.

Basically...she's got some sort of virus and it's getting the best of her weak little heart right now. She is working so hard to breathe right now. She is finally asleep after the circus and I hope that with just IV fluids through the night...she won't wretch and can get a good night's sleep. It's been a rough day....for both of us...tomorrow has got to be a better day!

(Insurance) Money Well Spent

Well...those expensive, monthly Synagis shots are working. We just got back the news from the re-swab...that the test came back negative for RSV. Although, she obviously has "something" due to her yucky nose drainage and cough...it isn't the "BIG ONE" that could postpone her surgery for weeks! So...we need keep prayin' that whatever she has....goes away quickly and doesn't settle in her lungs. Her lungs have remained relatively clear...with just a few crackles before her lasix treatments.

She is still heaving....a little bit more than normal this morning. We stopped her feeds for an hour to give her a break and I'm pretty sure the plan is to start her on some medicine that should help with all of this.

It's still up in the air about surgery...they haven't cancelled it yet...BUT..they won't risk it if she has any sort of lung issue. Poor little girl....she still just doesn't feel good. I just feel so bad for her. Fortunately, she appears to sleep pretty peacefully...when she is sleeping.

Our latest battle...keeping her head elevated. The roly-poly can get herself flat...no matter how much you prop her and put pillows and rolls under her legs. She definitely prefers to be flat...but she really needs to be elevated to keep her draining.

We are still in an isolation room...since she does have "something" So...it's pretty quiet! I didn't get much sleep last night...but stayed in my sweats and got some more sleep later this morning after the docs came around.

Friday, November 23, 2007

Friday News

Here it is 4:oo already. It's amazingly scary how fast some days go in the hospital..even when not much is done!

Our night was so-so! We continue to fight the clogged g-tube...but I am learning some tricks to keep it moving. Unfortunately, most of them still require getting up every hour or so! Also...she did wake up around 1:30 and just wanted to be snuggled! That's fine with me!

So...the pediatric surgeon team, gastro team and cardiology team have seen her today. They are still trying to get past records from St. V and Lutheran. We have her at 30cc of continuous non-stop feeds. She is tolerating them for the most part! She does heave occasionally...but usually it is when we move her out of bed. She takes 1oz of apple juice every few hours. Today...she has been a little more perky...she actually sat on my lap and watched Barney this morning. It has been good to see her more awake...even though the anti-nausea medicine they are giving her is making her sleepy.

Of course..we couldn't have a day without some sort of drama. Today...it is in relation to her cough and a very tiny runny nose. So...they had to swab her and send cultures to the lab. Now..the poor nurses have to wear gowns and masks when they come in, incase it is a viral infection. The good news..it guarantees us a private room! I think it is all heart failure related...but they just want to rule it out! This needs to be the focus of prayer...as any sort of infection would prevent her from having surgery on Tuesday. So far....no fever. Oh...and her white blood cell counts are back down! We also took a trip downstairs for xray.

We got our 1st Michigan visitors. Scott and Laura delivered our van and our Thanksgiving lunch. Laura is Art and Reen's daughter...and they are the newlyweds whose wedding we missed due to Kate's hospital stay. They stayed and chatted a while and had lunch with us. They are also our "official" host and hostess of Ann Arbor. We most likely will be bunking with them at their house which is only like 10 minutes away and tomorrow Laura is giving me the official tour of Ann Arbor!!

Thanksgiving...warmed up in the only containers we could find! It was still yummy...thanks for sending some our way! Later..the PIE!!!

Andy just left for home...he's got to get to school and finish lesson plans for the next few weeks. He'll stay home until Sunday afternoon and love on our little guy...not that he isn't getting lots of love from Nana and Oompa.

I think I'll grab a little nap! Oh..bummer..the nurse just came in to tell me they didn't get any cells with the swab and will have to repeat tomorrow...plus more bloodwork to check her electrolyte levels since they upped her lasix! I HATE THEM POKING AND PRODDING MY LITTLE GIRL....ALL THE TIME! Oh well...if that is what it takes to make her better!

Thursday, November 22, 2007

Stay in Touch!!

I know...lots of posts today! Nothing on tv except football and Kate has been sleeping most the day...so I've had lots of time to play.

Kate still continues to be really sleepy. We are in the process of slowly increasing her feeds from 10cc to 30cc an hour. We are increasing by 5 cc every hour. She is up to 15 and has not yet retched. We are still trying to figure all that out...there is a lot of doctors getting involved asking lots of questions. Her blood work from this afternoon did show an elevated white blood cell count...so there most likely is some sort of infection brewing somewhere...now to find where and what kind! She has yet...everyone knock on wood...to spike a fever.

So...Andy and I just hung out today...waiting for news...which never really came! They are actively involved in her case...trying to get medical records from St. V and calling in all the specialists and ruling out things...our goal...just get her strong and nutritionally balanced for surgery!!! I expect tomorrow will still be a "holiday" and things a little slower than normal.

Andy and I dined on Chinese Take-out tonight! It was surprisingly good...once I found the door that I was supposed to pick it up at! I guess the delivery guy called Andy 2 times wondering where I was...and in truth...I was roaming the desolate halls of the hospital...looking for the right door.. But...we have homemade turkey and fixings in route! Art & Reen's daughter and son-in-law live here in Ann Arbor and went to my parents today for the feast. They have brought us back our plates...and we look forward to partaking in our feast tomorrow lunch. Kate's no longer roomin' with Jack...they split ways today...and Kate didn't even say goodbye...she just kept sleeping..I sure hope this isn't a sign of her future relationships!!! So...it should be a quiet night and the two of us should be able to sleep!!!

If you would like to call us: the direct line to our room is: 734-936-3469 We don't have cell phone capability in the room and we like to be waiting for news in the room...so fell free to call if you would like! We should be here until Tuesday.

And...I won't be shy...our mailing address is below: Considering Kate and I might be here 3-4 weeks...mail would be a fun treat!!!

Katherine Layman c/o
University of Michigan Health System
Mott Childrens Hospital
Box 0236
200 E Hospital Drive
Ann Arbor, Michigan 48109-0236

We do have so much to be thankful for today...thankful that Kate has overcome so many obstacles placed before her and continues to fight a strong battle! We are thankful for our incredible families...who go beyond the call of duty to watch Seth & Kate and take care of us grown-up kids. For the amazing amount of support (prayerfully, emotionally, physically, financially) that SO many people have shown us...we are most grateful. The list could go on: insurance coverage, medical expertise and care from genuinely concerned caregivers, a beautiful home, an understanding and generous employer, a healthy inquisitive 3 year old, our marriage, a smiley little red-haired 1 year old...even in the midst of "crisis"...God is good! And for that we are MOST thankful..for a Heavenly Father who loves us more than we could even begin to imagine...and His son...who died for US...so that we could have life...and have it to the fullest..even if that right now...is on 5East at Mott Hospital. Love to all!

Movin' Up To The Big Time

Thanksgiving Feast!

Seth's Preschool Thankgiving Feast was on Tuesday. We had a short program and then feasted on kid-made vegetable soup, pumpkin muffins and hand-churned butter. As you can see from the 2 vidoes...Seth was quite bored with the whole entertainment thing! Honestly, I was thrilled that he at least stayed up on stage! I have to give him the benefit of the doubt...it was his 1st debut and having had the trauma of music class for the past 2 months...it was good for him to not throw a fit! The music teacher says it's her goal to get them all participating by the spring show! Push the arrow and enjoy some Thankgiving entertainment...by some other kids...not ours!!!



In case you couldn't tell..he's the big kid in the middle...not doing a THING!!!!

Seth's Turn

Funny story for the day. Obviously, Seth is a little "overstimulated" and it took him a while to fall asleep last night at Nana & Oompas. He wanted "Reen" to stay with him. (In case you missed it: our super Seth-sitters, Art & Maureen are in town from NC for Thanksgiving and staying with my parents). So "Reen" graciously agrees to stay in the basement and do some hand sewing. After a while...she gathers her belongings and begins to head upstairs. Here is the conversation that followed:

Seth: "Where do you think you're going?"
Reen: (Being sly) "To check on you"
Seth: "With all your stuff?"

The little bugger is too smart...and getting way too smart in his vocabulary and expression. That story just makes me laugh.

Below are some pictures Reen sent me from their trip downtown last night to see the annual Lighting of the Santa. Andy and I were bummed that we weren't' able to attend...but gaging from the pictures and weather...maybe it was better someone else took him! Thanks Art, Reen and Gayle for continuing our tradition with our little guy! Love you guys!


2 Bites of Good News!

We've gotten a couple "good news" reports lately.

1. We just got back from some gastro studies. We went down to xray and they put some barium/contrast into her g-tube and watched where it went and if she was still refluxing and/or if her Nissan had come undone! Then...he had her drink some barium and watched it go down her esophagus. NOTHING IS WRONG STRUCTURALLY WITH HER TUMMY! Everything is working as it should! The esophagus is no longer constricted, there is no reflux, all her pipes are clear.

So...no definites as to why she is still retching....things look like they are more and more pointing to her heart. We appreciate their thoroughness in wanting to check everything to make sure we weren't dealing with bigger issues...and she is not...something to be thankful for today!

2. Since we found out about Kate's genetic disorder...we have continually had the fear that one of us was a carrier. Although, we don't have any of the major issues...we lived in fear that we could have a mild case. While we were in Indy for the g-tube, we went ahead and had the blood tests. We got word last night that Kate's deletion is a fluke! It just happened...neither of us is a carrier! Which is such good news for Seth and for any future children?! ?!?!? That took a huge load off of our shoulders.

We are just hanging out...waiting for the next step in figuring out Kate! I think she has successfully puzzled them already! Way to go Kate! We just started IV fluids in order to keep her hydrated. Now, our biggest concern is how lethargic she is! She just wants to sleep! She won't play, she doesn't cry when we leave the room...and she didn't throw a fit during the GI studies! That is our next goal...get her some energy!

Hope you all are enjoying your Thanksgiving traditions! We just had bagel sandwiches from Einstein Bagels in the hospital basement! They were tasty...but the cafeteria/non-medical side of the hospital sure does shut down on the holidays.

My cable is still in the car...pictures are coming...I PROMISE!

Early Risers up North!

Things get movin' pretty early around these parts! It's gonna take some "getting used to" in regards in being in a teaching hospital. There have been at least 8 different doctors check on her in the past 12 hours!

This morning several docs at differing levels of their education have come in to check out Kate and ask me lots of questions. One thing...they are very thourough! So...now they are doing some sort of meeting...then they will ALL come around with rounds and then later they will meet and come back with the "plan of the day"

As far as "the plan" it will obviously have to do with her eating as she is not tolerating her feeds at all. We had to stop her tube feeds early this morning around 5 due to wretching and 4 hours later she is still wretching at times. SO FRUSTRATING ...and SO AWFUL to watch. She is sleeping well...extremely tired. I"m anxious to wait and see and what they have to say.

My night was less than desirable...with 2 patients in a room..there is twice the movement. Plus...my little brain was working overtime and it took me a while to fall asleep...plus, Kate's wretching! But...I guess I am running on adrenaline and ready to hear what the doctors have to say!

Wishing everyone a wonderful wonderful Thanksgiving. Guess I will turn on the Macy's Day Parade and pretend we're at home! Miss you!

Kate's Shackin' Up!

Well...we're all settled in! We left the Fort around 5ish...and had a pretty uneventful trip up here! Kate slept almost the whole way...not one fuss from the princess! I guess the driving conditions were less than optimal...Andy followed the EMS and said the visibility was awful!

We got moved in...several docs came by to assess her and we went downstairs for a chest xray. They have been pretty thorough in checking her out! Not much is being done tonight...just see how she tolerates her feeds through the night! I think they are going to do some sort of esophagram tomorrow to see if there are complications from her g-tube/Nissan or if her coughing/wretching is just worsening heart failure! Her tummy looks lots better...I think the IV lasix really did the trick on getting some extra fluid off of her.

We're trying to get adjusted...Kate is shacking up already...sleepin' with a younger man! And...to top it off...it's a one night stand! (Our roommate is a 3 week old baby boy...but he gets to go home tomorrow) So...we get to listen to newborn baby squeals throughout the night! Kate is oblivious...she is sleeping well right now!

I have lots of pictures....from Seth's Thanksgiving Feast to Kate ambulance ride to even a cute one of her in her little buggy for xray! However, my downloading cord is in the car (at the hotel with Andy)...but I PROMISE to get those posted tomorrow!

We're praying for some answers tomorrow...answers to why she is having to work so hard! I really really feel we made the right decision and are in the right place! It stinks...BIG TIME...but it's just what we have to do!

Love to all...our Michigan ride has begun....let's just hope it's a short and easy one!

Wednesday, November 21, 2007

I hear it's nice up there!

Kate has decided that she would like to go to Michigan a little early! In about 30 minutes...around 4ish...Kate and I will be taking the Mobile ICU up to UofM at Ann Arbor while dad follows behind in the car.

Kate's numbers look great...her O2 sats are 98ish...her blood pressure great...BUT...she just isn't tolerating being fed and is really lethargic. It makes mommy really really uncomfortable. Every time we feed her...she starts heaving! Something isn't right!! My mommy instincts are on full alert!!! She is making her grunting noises and has basically slept all day!

So...we are headed up to Michigan. As nice as they are here at Lutheran...they just aren't versed in kids in congestive heart failure. Our goal...is to have her strong enough to have surgery on Tuesday. We need her someplace where we have the resources and tools to get her fed and monitor her heart!

So...we're going! We're not happy about it! I didn't even get to say goodbye to Seth. We still have lots to do in order to "get ready" to go...but I guess that will wait! I ran home and through stuff together faster than I could imagine! I have no idea....I realistically could be up there (2 1/2 hours from home) for 4-5 weeks!

But....getting her in a place where I feel she is truly safe...is WAY MORE important than turkey and hanging up decorations. Yes..I am truly bummed that we will be away from family...but right now...Kate needs us...so we will go!

Will fill you in tonight after we get settled and hopefully some answers as to what exactly his going on with our little sweetie! Keep those prayers going!

Tuesday, November 20, 2007

Not OUR Plans for the Day...

to spend it at the HOSPITAL...Yes folks, we are AGAIN settled into the PICU at Lutheran. It all began last night...

At dinner, Kate was getting tube fed when she got really clammy, starting sweating, coughing and dry heaving! YUCK! We stopped the feeds and she got better. She did continue to cough throughout the night and sounded a little raspy. We had an appt. with our pediatrician on Wed...but I called the answering service and asked if she could be seen on Tuesday morning.

Then...Nana came to the rescue and slept with Kate! I had the monitor off...and after tossing and turning for a while, had a wonderful solid night's sleep! Nana said overall the night went smoothly, with just a few coughs and 2 tube back-ups.

But...when the pediatrician called and offered an 8:30 appt..I jumped on it! Nana took Seth home with her and Kate and I headed in to see Dr. Jim. He thought she sounded a little "wet" in the lungs as well as her liver being a little bigger! All signs that she is fluid overloaded. It made sense to me...that's what most of her symptoms pointed to! He thought a night in the hospital with some IV lasix (diuretic) and she would be good to go.

So..Kate and I headed to Lutheran! They did all the normal check-in and vitals. Andy...bless his heart...found a sub and met us here soon after! By the time the paperwork was done I had to leave to join Seth for his Thanksgiving Feast at Preschool. I was frustrated when a couple hours later...NOTHING had been done to Kate! Why are we here?

So...Andy became assertive and began asking the "what's the plan questions." Then they finally got a plan and started truly assessing her. Her chest xray came out clear! A pleasant surprise as we were expecting them to be cloudy! The next concern was her "enlarged liver" and distended belly. So...they ordered a abdomen ultrasound. Then...after the HUGE ordeal of getting blood and an IV placed... finally they were done messing with my kid!

The diagnosis: not much! Her liver and spleen are not any larger than normal for her! All her bloodwork is normal! The only finding: a little extra fluid in her stomach. So....hopefully, a night of IV lasix and we will be home. The local pediatric surgeon just came and checked her and didn't feel there were any lingering surgical issues!

So...basically, surgery can't come soon enough! Evidently...it's just really hard for her precious little heart to pump off the fluid in her body. It doesn't help that we are trying to force it in her through her tube! Just to clarify though, we haven't been pumping it in her at an alarming rate. She technically needs like 32 oz a day...I have only been able to get 16-20 oz a day. Her heart is just really really overworked now!

So...here we are. Seth is having a blast...enjoying my parent's annual Thanksgiving Soup Supper with a bunch of their friends. I'm sure he is the hit of the party and getting lots of attention...especially from our great friends Art & Reen who came back from North Carolina for Thanksgiving. Andy and I are about to enjoy our lovely room service meal! YUM YUM! It's crazy...but amazingly scary at how "routine" this is becoming! I know exactly what to grab and pack and know all the answers to their stupid questions: Our favorite: "How would you like us to teach you about her care/condition?" They are looking for an answer like: reading, watching, doing! Andy's response: "filmstrip!"

So...nothing major! Just a little pitstop, I guess! Will keep you posted! But as always...your prayers are always appreciated.

Monday, November 19, 2007

Circle of Heart Moms

Not much to report today...just a day at the home with the kids! It was kinda lazy...we didn't make it back upstairs until after 1 to get dressed!

I did want to write about an awesome blessing that has developed over the past few months! There is this "circle of heart moms" who have gotten connected through the www and blogging! For me, it has been an awesome encouragement to hear from other moms who are "livin my life." I check on their kids daily...and even though we are spread out all over the US and we have never met...I feel as if I know their kids, struggles, joys, heartaches, frustrations....I KNOW THEIR LIFE! I wish having a "heart baby" on no one...but for those of us blessed with one...it means so much to me to connect with you.

So to all you heart moms..thanks! Thanks for sharing in our journey! Thanks for letting me share in yours! Thanks for encouraging me with your comments! Thanks for making me laugh at the insanity of hospital, ER & doctor life! Thanks for your prayers for our family! Thanks for lovin' on us! Thanks for just being you...amazing moms blessed with amazing little kids!

Maybe someday, we'll all be able to get together and celebrate with our kiddos who have made it through countless surgeries and an infancy filled with way too many pokes and prods! Wouldn't that be awesome... a little incentive to start playing the lottery. But until then...I'll see you on the web! I'm checkin in everyday...wouldn't miss it!

BTW...Not that I don't TOTALLY appreciate all the love, support, comments, prayers, etc from everyone else who also shares in our journey! I couldn't make it through without all of you too!

Wandering Minds

So....it's after midnight...and I can't sleep! Life continues to be crazy in the Layman household! Maybe a little a "blog therapy" and my mind will clear! So...thanks for listening...my dear Blog readers!

Andy just left for a 40 minute drive to work to do lesson plans! He really needs to be with his mom in the hospital now...and I totally support that! So...he's doing plans so that he can spend the day tomorrow at the hospital! I hate it when he drives at night to do plans...but just a sign of what a dedicated teacher he is!

Kate's feeding pump and I are fighting...and the pump is winning! Last night, I had the worst time getting her formula to continuously flow through her tube! In fact...2 times last night I went in to her room only to find her syringe within drops of overflowing! The pump was just pumping the formula into the syringe and it wasn't going into her tummy! So...we were out those hours of feeds! Then...another time...last night...I went in to find the syringe had fallen and Kate and her bed were completely soaked with formula...again...more feeds wasted and not in her tummy! Then again..last night...I went in to find her tube clogged and had to completely unhook her and clean her whole tube out! The amazing thing...Kate slept through every episode! I'm guessing...that when she coughed or "burped" air got into the tube and caused the blockage. What a pain! And if you do the math...considering all these things happened last night...my sleeping was quite interrupted! Thankfully, Nana came to the rescue today and let me get a nap in! Thanks Nana...you're awesome! So...any tricks or advice from g-tube mommies would be greatly appreciated!



As far as Kate...she is still pretty tired and weak! She hasn't gotten her spunk back yet...but I'm suspecting that probably won't happen until after this next surgery! She is still tender at her g-tube spot...and I feel so bad cleaning it! Her tummy distention continues to go down a little bit each day...so that's good!



Seth...is as amusing as ever...and generally sweet! One of his favorite things is to do "tricks" at bedtime! Either Andy or myself does some sort of physical stunt with him..whether it be swinging, spinning, rolling, dancing, etc. He just loves it! It is always such fun to end the day with laughter and smiles. He had fun with daddy and grandma on Saturday night at the Portland Holiday Light Parade. Small town parades are the best...they can still pass out candy!



I know it's been a while since I've posted some pictures...I need to be better at that! Here's a few from the summer to tide you over! I'm off to bed...maybe my mind will stop wandering! We've got a busy week ahead...so much to do to get ready to leave in a week! YIKES!






HOW CUTE ARE THEY???

Sunday, November 18, 2007

"I Work Alone"

Today...we were blessed by a very kind offer! One of my friends, Amy, has a friend, Carrie, who is professional photographer. She so graiciously agreed to take our family pictures! Part of her mission with her business is to take pictures of families with chronically ill children. Amy mentioned us to her and we have been trying to set up a time for a couple months now. (Somebody keeps foiling our plans with trips to the hospital!)

Anyway..today was the day and Carrie and Amy drove 2 hours to our house! Their 1st stop was the house we lived in 3 years ago...Oops! It was funny...they called and kept asking if we were home...I kept saying "yes"...and they wondered why we didn't open the door!

We were all dressed to the hilt! Cathy (grandma) had bought matching outfits for the kids and they were absolutely adorable! Kate was all smiles...UNTIL...the camera came out! She was FUSSY! It didn't matter if I was holding her or if she was next to Seth...she wanted nothing to do with our family photo shoot! Until...I finally set her down all by herself...and out came the smiles! Evidently, Kate shares the camera with NO ONE! Seth was trying his best...it was a long time for him to "keep smiling" and wait for the minute Kate was crying! I wasn't past bribery today...as he got a trip to McDonalds and ice cream...I am not a good mommy under photo taking stress...when does the family photo shoot become fun? I'm guessing we have a few years!

I am anxious to see the pictures...probably the best family one will include a paci! But...I think Carrie got some really cute ones of Kate...and just of Seth! Thanks Carrie for being SO patient with us! We really really appreciate your kindness. Thanks Amy for introducing us and making the drive with Carrie! You are both a blessing to us!

Prayers...Prayers...Prayers!

As many of you know, my father-in-law, Larry, has been courageously battling cancer since March 1. He has spent many of the past few months undergoing chemo and radiation...but has remained strong throughout! Well...right now...the battle is tough! He was admitted to the hospital on Thursday and has mainly been dealing with breathing issues and LOTS & LOTS of pain! Today, he had emergency surgery to help secure some of his bones in his back and place an epidural pump for him to control his pain! He is very very weak...and in lots of pain!

Andy went today to Muncie to spend the day at the hospital with his mom! She is one tough lady! But...even though they are both tough...prayers are needed...for peace and comfort and answers! It is a terrible season of the year to be sick and away from home! Please lift Larry & Cathy up to the almighty healer! And prayers for Andy too...this is tough...dealing with his dad and his daughter at the same time!

I lucked into a amazing "in-law" family! They have been nothing but wonderful to me...it hurts me so much to see them go through such pain and the uncertainity of cancer! Please join me in praying for them...they know Jesus as their personal savior...HE is capable of doing amazing things...and now is the time!

Saturday, November 17, 2007

To Shot or Not to Shot...

that was the question yesterday! What a mess when it came to Kate's monthly Syngagis shot!

So...after having to rearrange the scheduled date due to Kate's latest hospital stay...we made plans for the nurse to come at 1:30 on Friday. Well...she called and I could tell that she was deathly sick, just from talking with her on the phone...and was so grateful she had the courtesy to call and not expose Kate to anything! After some lots of phone calls trying to find someone to give it...they finally found someone who would come at 5:00.

(Sidenote: I have to stop and just say how grateful we are that we are able to have home health care come and give Kate her shot! I know lots of families have to pack it up, go to a clinic and expose their kids to who knows what awful stuff we are actually trying to avoid! So...I am thankful for this!)

So...this great nurse shows up and and we get out the kit that came in the mail! Wouldn't you know the pharmacy sent the wrong size syringe! And..it's 5:30 on a Friday night! The big debate was then if we boil some syringes I had for oral meds or postpone the shot...knowing it could go past the 28-30 day window from the last shot! Well...all the nurses left it up to me..and I figured better to wait a day then send some kind of infection into Kate's bloodstream straight to her heart! So...I kindly thanked the nurse and she was gone.

Well..after several more phone calls...and a trip to our local pharmacy...I have the correct size syringes and we have the shot rescheduled for today at 5. I am truly grateful that the nursing agency was able to find someone willing to do the shot on the weekend...yeah for "On call" nursing! BTW...I do have to give credit to the pharmacy...they did overnight the correct syringes to me also...and they were at our doorstop before I even got up this morning!

So...all in all, I guess it all worked out okay...just another hassle and a few extra minutes spent on the phone! So...it won't be long...before we wake our sleeping princess for 2 rude awakenings in her legs! Sorry Kate!

Friday, November 16, 2007

Is it legitimate?

We were back to our pediatrician, Dr. Jim's for our weekly check-in! He is so faithful about keeping a weekly eye on Kate! She weighed in at 18lbs 13oz! I was kinda freaked out...that is almost a 3lb gain from her pre-op weigh-in of 16 lbs last Friday! I can't imagine that the little bit extra she has been getting from the g-tube has made that big of a difference...especially since she had like 3 days this weeks when she didn't eat at all. Dr. Jim didn't think she looked as if she was retaining too much fluid...but most of the weight seems to be in the abdomen area...her little arms, wrists and legs are still tiny! So..we are going back next Wednesday to see how much of it stays...and is legitimate weight! Who knows...maybe it is! Wouldn't that be nice!

Dr. Jim said otherwise...she looked great...and appeared to be in great shape for surgery! I think we're down to the 10 day countdown...so we definitely have to be very careful about where we take Kate and what we expose her to...which is a real bummer considering we are going int o the holidays. The nighttime feedings are going great...she is only waking 1 or 2 times between 10 pm and 9 am and is easily consoled back to sleep! Although I am still getting up with her...it is not for hour long feeding stints! That's good news!

Well..she gets her monthly synagis shot in a hour...should try and get her a bottle before they come!

Thursday, November 15, 2007

Trial & Error

Overall...Kate's night went fairly well. She slept soundly until 4 am. I even went in at 1 to change her diaper, give her her meds and check the pump! She slept right through that! She did wake up at 4am...and I couldn't console her...so I tried some milk...she took an ounce orally and then went right back to sleep until 9! So...a good night!


As far as today, she hasn't been real hungry! She took a little bit of baby food for breakfast...but is pushing away any milk or apple juice! I don't know if she is full...or maybe since she is getting some thick formula type stuff...maybe it takes a little longer for her body to digest. So...I have put some formula down her tube today...in hopes of getting her our goal amount of calories. She has dry heaved just 3-4 times...but nothing major! So...I guess we just have to figure out how much she wants to eat..and how much her body can tolerate!


She is sleeping now...and Seth is at preschool...I've got about an hour to get myself organized from being away and get unpacked!
On our way out of the hospital...we ran into Clifford yesterday! He was making rounds and handing out little stuffed replicas of himself...we snapped a quick picture before heading out!

Wednesday, November 14, 2007

Way Too Easy

KNOCK ON WOOD...I'm sure it's not going to be like this every night...but tonight went extremely smoothly in regards to Kate's feedings. My goal right now is to get 4oz bottles in her orally throughout the day. This afternoon...she did beautifully. Tonight...she only took 2...so I very slowly poured the other two in her tube...and down it went! Wow! Then...we snuggled a while and I took her upstairs, layed her down, hooked her up to the pump which will give her an ounce an hour throughout the night...and left! No crying! Nothing...just a beautiful little girl asleep in her own bed...getting extra calories. That's a miracle considering her trend of wanting to be with people after a hospital stay!

The question is whether or not she will want oral feeds through the night...and if she will sleep through the night...without having to be woke up for vital signs? Turn in tomorrow to find out!

It was wonderful to see Seth and Andy again. I sure do miss my boys while I'm gone! Plus...both my kiddos in the bathtub again...that's precious time!

So...I'm off to bed...will tackle unpacking as well as finding a place for all of our tube feed supplies tomorrow! Thanks for all your prayers throughout our past little hospital stay!

Ticket to Ride!

We were given the official ticket out of here by our surgeon! YEAH! Her belly should go down over the next week or so. She did really well with her feeds last night...and even woke up twice for extra oral feedings! Go Kate Go!

So...now we wait some more....Wait for case management and all the "powers to be" to get her paperwork done! Andy should be here any time...so I'm hopin we are out of here by 2!

I'm excited to get home...get some rest and see Kate back in her natural environment where she thrives...at least more than in the hospital.

Next post...from home!

Tuesday, November 13, 2007

Kate...the flirt!

Kate's abdomen xray showed some excess fluid in her tummy, as well as some excess stool! So...hopefully, tonight she can work all that stuff out of there! We are increasing her continuous feeds through the night...and KNOCK ON WOOD...if Kate tolerates it all well...we'll get our ticket out of here tomorrow! WOO HOO!

She is eating well...taking a whole jar of baby food tonight for dinner. She is hilarious today...she will only smile for Dr. Hendrickson. The minute he walks in the room...she smiles and does all her tricks. All our favorite nurses come in and talk to her...and they just get stares! Evidently, Kate is a flirt!

Tonight, I was all excited because they passed out fliers that there was a FREE family dinner on the 3rd floor waiting room! Yeah...free food and a chance to talk to someone! Well.. the pizza was good...but I was the only one who actually stayed in the waiting room....everyone else took their piece of pizza and went back to their kid's rooms! I was bummed...but at least it wasn't cafeteria food!

Seth had a great time last night and today with the Uncle Doug, Aunt Amy, Elijah & Lucas. Thanks for watching him so that Andy could get a day in work! Tomorrow, Nana will watch Seth so that Andy can come pickup Kate and me! Then...we're all staying home...for 2 weeks at least, until surgery!

For all my prayer warriors...please add this to your huge list from the Laymans! I talked with the social worker at UofM today and tried to get our name on the list for the Ronald McDonald House. She is putting us on...but no guarantees that we will get a room! Prayers that a room will open up...just in time for us would be awesome! We learned today that parents can't sleep in the ICU rooms...so we definitely would like a place to stay within walking distance of the hospital. The whole lack of private rooms that allow bunking in is going to be a huge adjustment for us...we're used to being within steps of our little girl!

So...overall...another pretty good day for us girls here in Indy! Love to all!

Tight & Tender

So...this is the condition of Kate's belly! She has been poopin' fine...passing gas...all that fun stuff! She is eating well...actually ate some babyfood pears and applesauce today. The IV fluids are off. The surgeon seems to think it is just extra fluid in her belly area...but we just did an xray to make sure! They also gave her an extra dose of IV lasix...if they can get this fluid down...we should be good to go pretty soon!

Not much else to report...just hanging out and playing...waiting for the time to pass!
Will let you know the finding of the xray when we get results!

Monday, November 12, 2007

505!

Kate has been sleepy and a little uncomfortable...and doesn't want to be held for long periods of time! Since I have been "stuck" here...with no car...and a very grumpy girl when I leave the room...I've had some time on my hands. I've played every game on the computer...constantly checked the computer for emails & webpage updates...taken naps...watched way too much television...and figured out:

Today Kate is 505 days old! Of those 505 days...she has spent 115 of them in the hospital. That's over 1/5 of her life! And...we have spent 67 out of the past 111 days in the hospital! That makes me sad!

I get sad when I think about all those days that I have been away from Seth. That I've missed putting him to bed so many times. Sad when I think about the fact that most of the days in the hospital for Kate have not been fun...not fun for any of us! I get sad when I realize how much our family has been separated.

I'm tired of it all:
tired of nasty cafeteria food
tired of watching my baby be in pain
tired of waiting for doctors to come and dictate our life
tired of not tucking Seth into bed
tired of manipulating cords and monitors just to hold my baby girl
tired of not seeing Kate smile and be her happy self
tired of not sleeping in my own bed
tired of saying "goodnight" to my husband over the phone and without a kiss
tired of carrying my stuff to the shower
tired of hearing monitors beep throughout the night
tired of scheduling appointments
tired of calling insurance companies to get claims filled
tired of packing, unpacking, packing, unpacking
tired of arranging schedules: who's w/Kate? who's w/ Seth? is Andy working?
tired of sitting in a small, enclosed room and waiting
tired of not knowing what the future holds

But...I'm not tired of loving on my little girl...and am EVER SO GRATEFUL for EVERY DAY we have had with Kate...in or out of the hospital...so we trudge on...we do all that we can to make sure that she will have a wonderfu, fulfilling life! I get overwhelmed and even more sad when I think about the fact that in 2 more short weeks, we'll be livin' this all over again! So...for now, I guess all I can do is go to God:

Isaiah 40:27-29
Why do you say, O Jacob, and complain, O Israel,
"My way is hidden from the LORD; my cause is disregarded by my God"?


Do you not know? Have you not heard?
The LORD is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.

He gives strength to the weary and increases the power of the weak.

So...right now..in the midst of my tiredness...in the midst of my weakness...I look to HIM to give me the strength I need to get through the next month! Yes, it is all too much at times...but He will give me the strength I need...I know He will...Cause He is just that GOOD! And...I am grateful for the amazing staff: nurses, doctors, chaplains, therapists, and our amazing friends and family who love on us, help us, encourage us and make "the worst thing immanageable" manageable! LOVE TO ALL!


BTW: Kate is tolerating her feeds well today! She has taken up to 2 1/2 oz of milk orally. Prayers have been answered as she is "moving things along." She is again getting continouus feeds through the tube tonight! Hopefully, tomorrow we can get her off the IV fluids and home very very soon! She is still a little uncomfortable from the surgery...but overall, things are much better today!

Kate & Mommy

SHE CAN EAT!

Yeah...the surgeon was just in and gave the go-ahead to start feedings again! She has had 3 bowel movements so he thinks it's okay to continue! She is still a little sore, but that should get better over a little more time.

Stopping feeds is probably one of the hardest things for me to watch Kate endure! I guess...one, because I know as long as they aren't feeding her....we are further away from getting home! Plus...it's just got to be miserable for her...maybe not, but it seems like it would be

Her night was okay....she woke up several times and wanted some lovin...mommy thinks because she was hungry. I hope with some nourishment...her spirits will pick up her today! Will fill you on later in the day. Hopefully, we are on our "road" home!

Sunday, November 11, 2007

Small Successes

We've had a little bit of success...but not enough to convince the powers to be to let her eat! So...we will wait till morning! So...hopefully, we both can get a good night's sleep...tomorrow is a new day....Morning by Morning new mercies I see! I hope so much for steps forward tomorrow...these back step days just wear me out!

Poop, Kate, Poop!!

That's been the chant all day today...and we haven't had much luck! Through the day, her tummy has become more and more distended, tighter and more and more tender to the touch. They have stopped all feeds since 9am until she starts moving more things through! She has received several suppositories...but they don't seem to be working real well! She did have a small movement around 5 and we heard a few air "burps" through her tube...but not enough to warrant re-starting feeds or take her out of her discomfort.

So, it's been a bit of a long day...just waiting...and waiting! She seems to be in okay spirits..not any more smiles...but at least she isn't miserable! She has taken a few good naps and wakes to play occasionally. We, obviously, are still in ICU...since she isn't making any progress...yet! I guess it should be expected of Kate to take the long road home...nothing comes easy for the poor girl.

Andy's dad is home...evidently it looks like it is just a really bad sinus infection. His white blood cells counts were good and his lung xray looked really good...especially for having had lung cancer. So...he will see his oncologist tomorrow...but overall..that's good news from the original report this morning.

The boys are home...busy working in the yard and playing! I get really tired of being separated during these hospital stints...I JUST WANT US ALL HOME! My buddy Mira was back today to take me to a quick dinner and a get caught up with each other...it's always great to see my ole' college roomie! love ya Mira!a

So...I will get back to my chant...and hope for a great evening! I just hate spending all this time without food...just more weight we're losing, instead of gaining and getting her stronger for the surgery! Love to all!

The smiles are a startin'


Kate is starting to smile...they are short little glimpses...very hard to catch on camera....but they are there! A great sign that she is starting to feel better! She has stopped itching her eyes..but now we have the scratches and cuts showing up! Poor thing looks as if she has been beat up!

She had a great night....we both slept well. She has be awake more and more and wants to play. She is fasicinated with the tube suspended above her and works really hard to reach it!

We are still on our 1oz diet restriction...until as Dr. Hendrickson puts it...."she fluffs...she is a lady you know" We had one tiny tiny bowel movement...but nothing just to show that all is awake down there! Never thought I would ask for prayers for my kid to pass gas!

She tolerated her minimal tube feedings last night...so hopefully we will up those tonight and get her more and more nourishment!

Just to add some excitement to our day...Andy's dad went to the ER and has pneumonia...and most likely will be transferring to Ball Memorial in Muncie. Andy went early this morning to pick up Seth. So...now we wait to see what the next step is in all this! Prayers for a easy recovery would be much appreciated!

It's a rainy yucky day here in INDY! I guess a good day to sit in a hospital room and wait for my kid to poop! Whooda thought?

Saturday, November 10, 2007

Taste and See!


Kte has been pretty sleepy this afternoon and evening...but her spirits have been great! She hasn't fussed all afternoon/evening...not even when those "nasty" nurses come to take the dreaded temperature. She has been taking her 1oz bottle very willingly and easily! She practically grabbed this latest bottle out of my hands before I could get her out of her crib....so we just let her feed herself. Although she drinks from a sippy cup herself...this was the 1st time she has held her own bottle! How cool will it be if eating no longer hurts Kate and she actually begins to enjoy it! We have started her continuous feeds through the tube for the night! Only a teaspoon an hour...so not much at all. She has yet to get her bowels moving...but hopefully that will happen soon!



We had some confirmation today while talking with one of the cardiologists here! He had nothing but wonderful things to say about our surgeon in Michigan...and even said some consider him one of the top pediatric heart surgeons in the WORLD! Nothing but the best for our little girl! We really feel we are on the right road now....nutritionally and with her heart...and soon she will be making huge strides: physically, mentally, medically and socially! Wait...we don't need her to be too much more social...well..maybe a little more verbal!! Today...I have a sense of peace...peace that everything is going to be okay! I know...we still have major open heart surgery ahead of us...but still....there is a peace! Thank you Jesus!

Psalm 34:

I will extol the LORD at all times; his praise will always be on my lips.
My soul will boast in the LORD; let the afflicted hear and rejoice.
Glorify the LORD with me; let us exalt his name together.
I sought the LORD, and he answered me; he delivered me from all my fears.
Those who look to him are radiant; their faces are never covered with shame.
This poor man called, and the LORD heard him; he saved him out of all his troubles.
The angel of the LORD encamps around those who fear him, and he delivers them.
Taste and see that the LORD is good; blessed is the man who takes refuge in him
How true is this verse...how appropriate for Kate...and us! I did seek Him...and he did give us the answers about doing this procedure! He has calmed our fears and helped us to know we did the right thing. We have had no option but to take refuge in God....to look to HIM for support, and safety during our journey with Kate! We do praise Him because He has brought us all through so much!

Raccoon Eyes!

Kate had a decent night! She woke up several times and got pretty mad...threw a crying fit...held her breath and turned blue! I'm guessing and hoping it was because neither Andy nor I were in the room. She had to have a little extra oxygen in order to get her O2 sats back up. So...due to her little fits...they are keeping her in ICU where they are a little more familiar with her! I guess they don't want the regular peds floor to panic if she turns blue!


But...we have started feedings...which is our ticket home! We just have to find the right balance of oral and tube feeds. So far...she has had a whoppin' 1 oz of apple juice orally! Not much...but we need to make sure her digestive track is awake and operational. We will do some continuous feeds through the tube at night tonight. She is due to eat again in about an hour!


She has been pretty sleepy...resting pretty comfortably... except for the fact that she had some morphine and evidently that made her really itchy, especially around the eyes. We came in to the room this morning to find our little girl with raccoon eyes! But...now the plan is Tylenol w/ codeine and they have stopped the morphine! Hey eyes look better already. Kate has been sitting up and playing some of her games, waving to the staff, etc. The surgeon was pleasantly surprised to see her sitting up so soon after surgery! She is a trooper! She didn't seem too uncomfortable while I was holding her...so hopefully the pain is subsiding.

Kate and her racoon eyes! Poor thing...they were just SOOO ITCHY!


Andy is planning to head home here pretty soon. It looks like Kate wants a roommate, so I will just stay in here with her tonight! Seth is having a wonderful time with grandma and Pampa..working them hard as he won't be satisfied until every leaf is picked up from their 3 acre yard!



Here is Kate...with her tube suspension contraption! This tube and syringe is what they have to collect any "excess" contents from her stomach. It is almost like a science experiment...as you feed her and wait to see if anything comes into the tube! Again..this is so that any extra pressure within her stomach doesn't pull out or stress her sutures. One of the nurse's son had this a year or so ago and she has given us some great ideas of how to get through the next few weeks with her syringe! One suggestion is to have a camera tri-pod...for her bed and then you could lower it when she is playing! We'll get it figured out...one way or another! But...if anyone has an extra camera tripod we can borrow for the next couple weeks...we would be grateful!

Friday, November 9, 2007

Sleep Tight Sweet Girl!

Hi all...Kate is pretty much out for the count! She has been resting pretty well...just getting mad and upset when she is awaken for vitals, diaper changes, etc. She is occasionally getting a tiny bit of morphine to help offset the pain...but they are hoping to change that to Tylenol around midnight.

We have another favorite nurse...our dedicated blog reader Melissa is on duty tonight and will take wonderful care of our little one as we SLEEP! I'm pretty excited about getting over 8 straight hours of sleep in a small, dark enclosed room!

So...as hard as it is to see her in pain...we know it was the right thing. Tomorrow will be a big day as we start feeds...both orally and through the tube! Time for mommy to get hands on and learn how to operate this mic-key button.

So...off to lala land! Will touch base and post some pictures tomorrow! love to all!

Room 10...again!

Kate did wonderfully through surgery...had absolutely no problems with the anesthesia. She got out of surgery around 1. We met with Dr. Hendrickson and he was very positive...a great surgeon. He even gave me pictures of the surgery for her scrapbook! One surprise though: he found a hiatal hernia near her esophagus! No wonder she hated eating and was always in pain. He was able to fix that, complete the Nissen and place the g-tube all with the laparoscope! Yeah! She's gotta feel better once she is recovered from this....there was a lot of damage happening inside her little tummy!

So...after a short recovery in the PACU (Post Anesthesia Care Unit) were are back in the PICU (Pediatric Intensive Care Unit) for a night. We have our great friend Christy as her nurse! Christy is awesome and has always taken such great care of her. We are back in our old room 10...but what a comfort to know it should only be a night before we head upstairs and then home!

Kate is resting peacefully and that is the plan for the day! Tomorrow we will start feedings and she how she tolerates it all! So..overall..a good day! I'm just so glad we got all that "stuff" fixed in her tummy and give her a chance to eat without pain! I can't imagine...she is so happy and smiley now...what will it be like when she isn't in pain!

Love to all..thanks for your prayers!

No turning back now!

Well...no turning back now...she is back in surgery! We got word that they officially got started at 11:11!

Our trip down here was pretty uneventful. Kate did very well and only fussed a few times when she lost her paci or her hat had fallen over her head. We met for a "yummy" dinner at McDonalds and once again left Seth (in very capable hands, I must add!) Still...it's hard to leave him! We checked into the hotel and basically hung out with Kate. She didn't eat well at all...like 1 oz at 10pm and 2oz at 2am...so that made me feel better that we are doing the right thing. Kate slept wonderfully through the night....what a sweetie!

We were back at the hospital at 8:30 for our 2 hour wait in the surgical weighting room. She was down at least another 1/2 pound this week...so more confirmation we are doing the right thing. Nana came down for the surgery and we all said our goodbyes before they whisked her away. They did give her some Vercet before they took her away...she could have cared less that she was leaving me! Maybe I need some of that for when I go to the grocery store!


Once we said our goodbyes...Andy, Nana and I went for our g-tube training! Right now it seems a little overwhelming...but they assure us it was become old hat...just like changing a diaper. Our biggest concern is the fact that for the next 6 weeks she needs to be "open to burp" Since she is having the Nissen (wrapping her stomach around her esophagus) she can't physically throw up or burp...but if her body says she needs to...or she isn't tolerating her feedings...there needs to be a way for "it" (formula, food, air) to escape! So basically, for the next 6 weeks...we have to have her attached to a open syringe....so that if anything needs to get out of her tummy it can! Since the sutures are new in her tummy, they don't want the extra pressure to build up in her stomach and cause those sutures to break. So...now we somehow have to maneuver Kate, her oxygen tank AND an open top syringe attached to her via a 2 foot tube! HMMM? We're not quite sure how all that is going to work! I think we'll have to put Nana's sewing abilities to the test and design something so that it can be attached to her so she can play and move! I guess it is good in some ways...that we only have 2 weeks of this before she will be back in the hospital for her heart surgery and she can heal there!

So...now we wait again...in our all too familiar surgical waiting area! They expect between 2-3 hours for surgery. Our prayer is that they can do it with a laparoscope and not have to open her up...the big issue is whether her liver is too big...the surgeon doesn't think so! Will fill you in later! I think we're back to the cafeteria for some lunch! YUM YUM!

Thursday, November 8, 2007

We're Off Again

I think we're pretty much packed...we're getting pretty good at it! We are heading down to Indy tonight...meeting in Daleville for dinner for Grandma & Pampa to pick up Seth...and then spending the night at the Marten House tonight with Kate! We feel fortunate that they put us up in the hotel the night before...Although it wouldn't be AWFUL to leave by 6:00 in the morning...it's the whole packing thing that seems to take forever! Plus...it's less trauma for Kate tomorrow morning.

Her surgery is set for 10a.m. We will definitely keep you all informed! Thanks in advance for all your prayers tomorrow as Kate undergoes another surgery! The surgeon's name is Dr. Hendrickson...if you would like to lift his skills and talents up to God too! Love to all!

Tuesday, November 6, 2007

What a Day!

Sorry for the late post....I know a bunch of you are anxious to hear how our day went! It was long...we didn't get home until 5:30...then supper, bath, stories...all that and finally a minute to update.

We arrived in Indy around 9:45! The drive was pretty easy...Kate was awake and watched Barney for most of the trip!

We met with Dr. Hendrickson, a pediatric surgeon. He was very comfortable placing a g-tube in Kate and showed us on a little doll what it would look like! It is a little bigger than I expected...but of course the doll was only 12 inches...so maybe in perspective it won't be so big! Our biggest discussion was whether or not to do the Nissan (basically tying her stomach in some way that would prevent her from refluxing and throwing up!) The question was whether or not she was still refluxing significantly! If not...no need to put her through the extra procedure and time under anesthesia...but if she is...then best to do both the tube and Nissan in one procedure. So...he sent us for a upper GI study!

We had a few minutes to spare before heading to radiology...so we went up to the PICU and made a social visit! It was great seeing everyone under today's terms...in our stroller and not attached to any monitors! Everyone was so glad to see Kate and we stayed and chatted for a few minutes!

Then down to radiology for the upper GI! Of all medical procedures (IVs, IO--shooting a needle in to her bone marrow in her knee, helicopter rides, blood draws, ER visits, test after test, exam after exam) I've witnessed with Kate...today was absolutely the worst! Besides seeming to have to wait for ever...they thought Kate would just "chug" 5 ounces of barium "crap" in a few minutes while laying flat on her back on a hard xray table with a giant camera over her entire body! Yeah Right! I can barely get Kate to drink 2 ounces of milk while snuggled safely in my arms! So...after trying a bottle...we got maybe 5 ml (1/6 ounce) so we tried a syringe! Nope...that didn't work either! So they had to resort to placing a feeding tube down her nose and then proceed to push 4-5 ounces of barium "crap" down her! This was not a pretty sight...Kate was fighting it all the way...throwing up that nasty stuff all over herself while they continued to push it down her tube! She was screaming and kicking and all I could do was stand there and watch and cry!!! (BTW...I appreciate the thoroughness of the study, and I guess there is no other way to do it...but it just STUNK!) So...after having to wait 30 more minutes to see if her stomach was emptying properly and then 15 more minutes for the report to be read...we got the news:
1. Kate's stomach empties beautifully (YEAH)
2. Kate has serious reflux issues (Good to know...perhaps why she doesn't enjoy eating)
3. Kate's esophagus is significantly narrowed in 2-3 areas in her upper esophagus. (What?) Usually, if damage is caused from refluxing, it is lower than hers...so who knows if it is congenital or being damaged from her refluxing! Could this be why she has so many problems eating and continually sucking on a bottle?

Oh yeah...it is now like 1:45 and Kate has had 2 ounces of apple juice since 5 am...and hasn't slept! But she is just the sweetest thing...trying her best to wave and be friendly! Gotta love her!
Then...up to visit our cardiologist for a quick visit to make sure she is stable for surgery! He gives the okay for anesthesia.

Then...back to the surgeon...and we settle on both the g-tube and the Nissan...the GI study kinda solidified that decision for us! So...Kate is scheduled for surgery on Friday at 10am! He will attempt to do some ballooning of her esophagus while in there...and hopefully, if it is damage from the reflux...curing that, will help with the esophagus problems.

It was much longer day than I expected...I was thinking we would be home by 1 or maybe 2~ NOT! But...we got the news we needed and are hopeful that this procedure will give her the nourishment she is so desperately needs!

Have to send special thanks to everyone who made today possible:
1. Nana...for driving us down there, enduring the day, buying lunch and providing support through all of this! Thanks Nana!
2. Grandma and Pampa...for driving up early to spend the day with Seth, taking him shopping, to and from school, doing all the laundry and having dinner ready when we got home! That was awesome...I had NO desire to cook after today...thanks for everything...I know it was a long day for you!
3. Andy (daddy)...for supporting us through all of this and going to work to provide the income for our family...thanks for making the sacrifice to be away today to support our family.

So...it's set...g-tube here we come! They are expecting we will most likely be in the hospital through the weekend...as we will have to learn how to operate this thing and give her time to adjust to the feedings! We're praying this is what she needs to get her through the winter and this next upcoming surgery!

Thanks for all your prayers and support today...will keep you updated...and fill you in through the weekend on Kate's progress! Love to all!