Monday, December 31, 2007

"We don't know!"

I just wish once I could type 2 posts giving you all great news about Kate...however...that just isn't the case.

I was called this morning to inform me that some of the pleural effusion (fluid) was back in her chest and they were going to put in a chest tube. After waiting for that and yet another new post-op roommate to get settled...Andy and I finally saw her around 2:00...sound asleep in her bed.

We talked with the cardiology fellow...and what followed was not encouraging. I asked where all the fluid was coming from (they had over 120 cc in her drain alone + more that came out when the drain was placed) and he told us her worsening heart failure. She is just not able to pump the fluid through her lungs, it backs up and then diffuses into her chest cavity. I can't imagine a total of almost 8oz of fluid backed up in her tiny little chest.

He made mention today that she is in worse shape then before surgery...as she is now on 2 IV heart meds + a chest drain. And for the first time...the topic of "quality of life" was in the discussion. The next week will be make it or break it for Kate and it looks as if we will have some tough tough decisions to make soon. Each time...her heart failure gets worse: the 1st time an extra dose of oral lasix did it...then she needed IV lasix...then a chest tap...now a chest drain. The doc said a lot will be dependent if she can stay off of the vent and then if not, we will face a fork in the road that could or could not include another surgical intervention (which they say she is not the perfect candidate for). She continues to spike these fevers...which now they are attributing to her heart failure and the amount of work she has to do. I left her last night in the best I've seen her in weeks...only to find out that around 5 am she began to fail immensely.

Andy and I don't know what to think or say. We have Seth with us which is tremendous medicine and forces us to "keep it together" However...we just don't know how much Kate can/should/will endure. They continue to hold her feeds as she has had to have so many "procedures" in the past few days...she is so frail....and continuing to lose weight. I don't think she has had 24 hours of solid nutrition in weeks.

We're not sure what to do right now...I guess there is another impending winter storm...and we still have lots of questions we want answers to...and we want to hear them together. They assured us that they will let us know when we need to seriously discuss options...but my instinct says that talk isn't far away. I pray I'm mistaken and that we will have a New Year Miracle...but am I just postponing the inevitable.

All we can ask for: prayer...lots and lots of prayer! Prayer for answers...and for peace! As the post title suggest: we just don't know what to do or say or imagine...we just don't know!

Woo Hoo!!

Wow...I am amazed at the response on our game. What joy you all brought me! Now...keep it up...don't make me raise the stakes again! I love it! They totally take my mind off of the whole "hospital life" and remind me of friends and family from home (and all over the country). I have read them ALL multiple times.


I just wanted to take a minute to say thanks! A HUGE THANKS to all of you. Your support of us during this leg of our journey with Kate has been amazing. The cards...the prayers...the $...the gifts...the calls...the emails..the gift cards....the food....they all are so precious to us! We value them all and we literally couldn't get through this without all of you (and Jesus too!) We have also been humbled by the groups that have gone together to support us! I can't tell you how much I appreciate all of your help in lessening the financial end of being in hospitals with Kate!



Gracepoint Nazerne Church (our home church)
West Walnut Church of Christ (Cathy's & Andy's home church in Portland)
Whitko Middle School (where Andy teaches)
Friday Night Supper Club (my parents friends)
Canterbury School (where my parents work)
St. Vincent PICU Staff (Kate's 2nd home)
Jay County School Corporation (Andy's hometown)
Covenant UMC (former church where I used to work)
Harvest Community Church (A church that just loved on us)
Deanna's Small Group (Christian sisters who I don't yet know!)
Patent Awards (My sister-in-law's workplace)

For any "blog readers" ---strangers and friends--- who are a part of one of these organizations...we give you our humble thanks! You are a blessing! Thank you for sharing the love of Christ with us! It definitely takes a village...so glad you are a part of it!

So...in honor of celebrating our 100 posts and ending the year on a great note with Kate's healing and recooperation...here's a little video of her great night last night!

Sunday, December 30, 2007

Kate, the social queen!

I went back this afternoon to find Kate sitting up in her bed...thoroughly enjoying her new room! Don't get too excited...we are still in the PCTU...but we have moved up closer to the nurses station and the hub-bub of the unit. She can look out her bed now and see lots of activity...she will love that. I'm thinking she might be doubled tonight (1 nurse/2 patients) I miss the one on one...but that is just a sign she is doing better.

They did a chest tap early early this morning...and mom and I found Kate much more comfortable this morning. Her numbers looked great...her O2 sats went from low 90's to upper 90's. But...we couldn't go without some excitement...around lunchtime, both her peripheral and central line IVs went bad. Luckily...they were just able to re-wire the central line and place an extra lumin in it...and didn't have to stick her again for an additional IV...So, in case you're wondering, currently Kate has:

1 central line in her groin for meds, fluids, etc
1 nasal cannula going at high flow--pushing the air into her lungs a little stronger
2 pacing wires...connected to her heart, but just taped to her chest and not in use
5 heart monitor stickers on her chest
1 O2 probe that travels from foot to foot to hand to hand
She only has 5 medicine pumps bedside: milrinone, morphine, ativan, insulin & one for meds (lasix) That is so much better than the 9-10 we have had. She also has a pump for a small amount of IV fluid and some IV lipids (fats)

But best of all...she has her paci and is almost up to goal taking her formula orally (most of the time...we tube it when she is sleeping.) She still appears jittery and anxious...and probably will be for a few days until she totally de-toxes. She desperately needs to cough and get some loose gunk out of her lungs that is just rattling around.

Mom left around 2ish...THANK YOU for spending the weekend with me! The boys are headed up tomorrow, so I just have tonight! I'm anxiously awaiting the 100th comment...only 10 to go...I know there must be 10 of you out there who haven't "signed in" yet! A wonderful church came to the RMH and made a wonderful dinner tonight...they were super friendly...it was nice to have someone to talk to during dinner! Thanks Faith Covenant Church for the wonderful meal and fellowship!!

Well...shift change is over and I will go spend an hour or two with the princess! Love to all!

Peace & Quiet

Things have greatly calmed down in Kate's little corner of the PCTU. In fact, tonight she has the room all to herself, she is down at the end of the hallway...and the staff told me she deserves a quiet night of rest! YEAH...She soundly slept through our last visit and slept most of our afternoon visit. She was still a little anxious this afternoon...as she is still having de-tox issues.

As with Kate..there is always "something." Tonight...it is some "pleural effusion"--fluid around the outside of her lung, that has been there for a few days. It is significant of size (probably at least an ounce & half) and is causing some collapse of her right lung...and her blood gasses are getting slightly worse. So...they have stopped her feedings in anticipation of tapping her chest between midnight and 2am. It's overall a simple procedure...giving her some sedation, placing an IV type needle and drawing the fluid out through a syringe. As much as I hate more "procedures"---that seems like a lot of fluid for her tiny body to absorb...and anything to allow her breathing easier.

I'm so enjoying our little "game" today...thanks so much to everyone who has participated...your comments give me so much encouragement...In fact one of the other moms in the RMH told me today that it was good to see me smiling! That's because of YOU...and the encouragement you send through your comments...may seem silly to you..but they are HUGE to me! So...I think 70 is pretty darn good for a days worth...but if you haven't yet left a comment on the "game" post...maybe we can make 100 tomorrow!

I find it encouraging because scripture tells us in Matthew: "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." What comfort to know that God is with us...we may not be together...but we are gathered together in "cyberspace...around a simple blogsite" and we can know that He is with us. What joy God must have to have so many believers, filled with the Holy Spirit, praying together for His will for Kate! And he tells us that if 2 or more agree...what about 100!!!!
Here's a few pictures from today....Enjoy !!

Mommy and a washcloth...doesn't get any better than this today!

Sitting up in bed...with just minimal support!

Saturday, December 29, 2007

A Note From Nana

Hello All,
We did get to see precious Kate for a while this morning. She was rather anxious and the nurse, Krista and I all attribute it to two factors. One, she is going through some withdrawal as her sedation medications continue to be reduced. Secondly, the volume control on Kate's roommate's TV does not work and it is LOUD!!! He is 14 and was watching the cartoon channel. The cartoons were irritating enough but you all know what happens when the commercials come on. It was getting on everyone's nerves so I can imagine what it would be like to be going through some withdrawal, not feel well, and stuck in bed.
What a great Christmas present from all of you who have "participated in the game" and added a comment The first thing Krista and I do when we return to the room is check and see what everyone has to say. It certainly makes the time go faster.
Remember, the goal is 100 comments of a single post so if you have not yet posted, do not add your comment to this post - go back to the previous one. We don't want to have any penalty flags.
However, if you have already left a comment on the "Games" post feel free to leave a comment on any new post at any time. We love hearing from anyone, anywhere, anytime.
We are headed back to see Kate now that the shift change is over and we can get back in the room. Hope she got some rest. She should have a new roommate - preferably one who doesn't like cartoons.
Check back with all of you soon. We are almost halfway to the goal.
Nana & Krista(The Comment Junkies)

Friday, December 28, 2007

Let the Games Begin!!

We weren't able to see Kate tonight...it was a little on the frustrating side! Mom and I went back a little after 8 and were told that Kate had a new roommate and it would take 20 minutes or so before we could go back! So...we waited and then called again...still another 30 minutes...then called again! Out comes Kate's nurse to assure us that Kate was fine...just sleeping away. However, her new roommate was not stable and she couldn't guarantee us when we could get in. So...we headed back to RMH for laundry, blogging, knitting and just some good mommy/daughter girl talk!

Just wanted to let you know (AGAIN) how much we appreciate all of our dedicated blog readers...the ones we know and all of you strangers out there! What a blessing to know we are surrounded by so much love during our journey. I was amazed at how many times I hear stories about people's co-workers who are reading our blog...or at Larry's funeral...how many of you said you read the blog! We're humbled...thanks for sharing in our journey!

And...leaving a comment is NOT HARD...and we would love to hear from you! Without tv in our RMH room...my computer becomes my best friend and entertainment...I love reading your comments...so don't worry that your comments are not read, appreciated and NO ONE thinks they are stupid. I cherish each one! Just as you check to see what I have written...so do I check to see what you have!! So here's a refresher course!!

1. Click on the underlined comment underneath the post . (not the gray square)
2. Type your comment in the box...be sure to type your name at the end
3. Under the "choose your identity" click anonymous. (you might have to scroll down to see this)
4. Click on "publish comment"

Now...I'm expecting a record number of comments! Let's shoot for 100 comments on one post!...I know...indulge me...I've been here too long, I'm getting bored!!!! Nothing profound...just a quick note to say "hi!" I'd love to see how many different states are represented...so if you are outside Indiana...share where you are from! Let the game begin...and Gayle, Doug/Amy & Scott & Laura...this includes you too!!!

Love to all...hope to spend lots more time with Kate tomorrow....I sure do miss our private rooms at St. V!

Back In My Arms


The picture speaks a 1000 words.

It only took four of us to get Kate and her wires into my arms...for the first time in 15 days! We actually had to move the bed in order for me to be in the middle of the iv lines and the oxygen. I held her for over 90 minutes...fed her two feeding...and just loved on her. She was overall pretty content in my arms and even fell asleep for a little bit.

She continues to make small small improvements. One of the sedative/pain medicines was stopped today and the other two should be tomorrow. She is still having some lung issues...but with some suctioning and breathing treatments...they expect improvements. She did have a low grade fever today, but nothing has come of that. Overall..she looks a lot better...we still have a long road...but she is doing better! That's all we can ask for.

All is Well

Kate is doing fine...I haven't spent much time with her today...as her roommate had to have several sterile procedures and I couldn't stay. Nana is here now...so it's time for all the girls to go snuggle..I think I will finally get to hold her this afternoon. Just wanted to let you know all is well...she is eating...only 2 tsp an hour...but it is something. Will fill you in later!

Thursday, December 27, 2007

"Stoned"

So...Kate's still going! I wish her breathing was easier...but she has great "numbers" on her monitor and blood gasses. Her xray showed some collapsed lung areas and some fluid in her chest...but not enough to do anything invasive. She is slowly coming more and more alert...but as her nurse today phrased it: "She is still pretty stoned" Her pupils are pretty dilated and her arms are shaky...but she finds her paci and turns some pages in books I read to her.

They are still holding off feeds...giving her more time to rest. Tomorrow will be 48 hours...so they better start feeding my little girl! I get so grumpy when they don't feed her...but that will be the next big hurdle...to see how she tolerates the fluid.

It was great to visit with Art and Reen while they were in town for Christmas...thanks for coming and loving on us! Mom is coming back tomorrow...it's pretty hard for me to be here by myself right now...probably just the let down from Christmas. Andy will come back in a few days with Seth again...but Seth is loving' being at home and playing with all his new toys! Andy is doing a great job with Seth at home! I feel bad about her driving back...but she just tells me: "Just like you'll do anything for your baby girl...so will I?" Thanks Nana!

Praying for progress everyday...even if it's small steps!

Seth's Big Day



As you can tell...Seth loved every minute of his visit! Special thanks to Scott for customizing his helmet and for the safety vest! You're gonna make a great daddy someday!!!

Still Off...but still workin'

Kate is holding her own and keeping her blood gasses good...she looked great this morning when I got over there...but has started working harder as the day went on. when I left at 3...they were giving her an extra dose of lasix and a chest xray....I'm on my way back to see how's she doing! Still no feeding or holding...maybe tonight!

Wednesday, December 26, 2007

Too Tired!

I'm too tired to post much. Kate is holding her own. She appears to breathing hard when I look at her...but her blood gases are fine, and "the powers that be" don't seem to be too worried. I'm a little anxious tonight, as I am dreading the late night phone call...but maybe a good night's sleep and some rest will give Kate the extra "umph" she needs.

As far as Seth's exciting day...you'll have to wait till tomorrow...till I have more energy AND I get the pictures downloaded!

Before & After

Before

After

Yep...she's tubefree...and lovin' that paci! It's going on 5 hours and all is well so far...she is so tired...but she has so many visitors and can't miss out on the social aspect: Grandma, Art, Reen, Scott, Laura, Seth, Daddy and Mommy...everyone can't wait to see Kate. Seth was so cute...he loved seeing his sister. He was so inquisitive about all of her medicine pumps and monitors...and the xray machine that came to take an xray of her roommate. So...a good afternoon. Grandma, Seth and daddy are headed back home this afternoon...so things are going to desperately quiet down....sounds like good snuggling time for mommy and Kate. I sure will miss my boys...but check back later for some awesome pictures of Seth today...he got a real treat!

Takin' Out the Tube!

Well...I got to see my little girl...awake and alert for about 15 minutes this morning...before they "booted me out" because they are going to "EXTUBATE!" Woohoo! Go Kate Go! Her sedation meds are slowly getting less and less and she is more and more awake! She just passed her last blood gas...so they're going to try again! She looks pretty strong to me! So..will fill you in later...you can assume no news is good news and we are back in her room lovin' on her! Maybe today...I can hold her again!!! BTW...forgot to mention that her chest tube came out yesterday...slowly, slowly...we are getting there!

Tuesday, December 25, 2007

The Magic of Christmas

Even with Kate in ICU...we still found a magical Christmas with Seth. What a fun age...and he has been so cute today! In some ways...I guess it is good that we didn't HAVE to be with an extubated Kate today and were able to really spend some quality time with Seth.

We've taken advantage of the "free meals" today..which I guess is a good thing since there is nothing open. The hotel provided breakfast and a ham dinner. We had lunch at the RMH and a family really put out a wonderful spread...almost felt like "home-cooking!" What is Christmas without cheesy pototoes?
Besides presents...we also went swimming...took naps and watched our new Wiggles movie while eating popcorn and M&M's. Here are some pictures from the last day...some of them don't get much cuter!

Our little tree...in the hotel!

Daddy and Seth reading the Christmas Story out of the Bible on Christmas Eve Grandma and her "cutie-pie" So glad Grandma could spend Christmas with us!
Seth putting out cookies and milk for Santa!

Finding treasures in the stockings!
The favorite present: a yard of bubble gum! Mommy is quite the push-over when Kate's in the hopsital...don't let the dentists see this one!

Kate's Red Leg

Well...we didn't get our Christmas miracle today. We found out this morning that they most likely wouldn't extubate her today. She is still fever free and they have stopped all the antibiotics (since they sent new cultures and nothing has grown). I asked why...and the nurse said she thought they wouldn't because of it being Christmas...and if something went wrong...it is too hard on the parents.

But...Kate couldn't have an uneventful day. We got there this morning around 11 and I noticed her leg (the one with the central arterial line) was red. Well...the nurse could find a pulse...but alerted the doctor. An hour later, when the doc finally came around...they couldn't find a pulse in her leg..even with the doppler. The theory was that hopefully the line was bad and NOT a blood clot...but that was a possibility. The were going to pull the arterial line and place a new one in her arm. Well..the doc came back and everything was fine. Her pulse was back and it wasn't red anymore. We haven't been up there yet to get word from the doc...but last we heard via a phone call..she was fine! It's just not a normal day for Kate if she doesn't do something to send me into tears!

We have spent most of the day with Seth...but Andy and Cathy are on their way up there now. I'm anxious to hear the late night report. I'm really going to start pushing for extubation tomorrow. The catch22 is that when she isn't sedated...she fights the tube...but when they sedate her...she doesn't' breathe deep enough to make them comfortable about extubating. UGHGHGH! So not a very exciting Christmas for Miss Kate...she is sure due for some soon!

Monday, December 24, 2007

What matters most!

It is my prayer...that this year...we start NO NEW traditions for Christmas Eve. Overall...we have made the best of our situation...but our night was filled with just a few "low-lights."

1. We went to church at a local church that advertised "Family Friendly, Children's Program with Live Animals" Sounds great! Well...evidently...kids Christmas programs aren't so cute...when you don't know anyone in the program and you can't hear it! But...we sang some traditional carols and exposed Seth to his 1st Christmas Eve Service. He did enjoy seeing the donkey, camel, goat and sheep!

2. Dinner...well the hotel offered Domino's Pizza...but we found an Applebees open....it was decent food, but our waitress wasn't into working Christmas Eve. It just doesn't compare to "home-made" fixins on Christmas Eve. I think this is the 1st year ever that I haven't had mom and dad's ribs, saurerkraut, mashed potatoes and peas.

3. Kate...and the downer of the evening was spending a couple hours with our "knocked-out" little girl and then having to leave her there all by herself on Christmas Eve. We were hopin' she might be awake enough for us to at least read to her some Christmas stories and let her see us open one of her gifts. Well...she slept...and we gave it the ole college try and read and sang anyway. (She is still the same....no fever...tolerating her feeds...the only thing is her hemocrit is borderline low, so they might give her some blood to give her a little push! They will sprint her through the night...when she isn't totally sedated)

But...our little Seth just makes our night! It was great to spend the day with him....He is at the perfect age for Santa.
Some "highlights" of our night:
1. Seth asking where the "nice guys" were in the Christmas Pageant.
2 Seth wanting to leave his Away in a Manger Book out for Santa...so that Santa would know that when he (Santa) dies...he could go to heaven with Jesus.
3. Opening our 1 Christmas Eve present: mine was the one Seth totally picked out by himself: a small picture frame, a stuffed snowman and an oven mitt! Way to go Seth...he used his "tip" money to buy Grandma and me presents....how cute is that! Plus he had $3 left over to put in the Salvation Army Bucket!

So...we've played Santa...the gifts are out....awaiting a totally excited little boy in the morning. And hopefully...the afternoon will bring a totally excited little girl who doesn't have a tube stuck down her throat.

We send everyone huge Christmas Blessings...no matter where you are...may you truly feel and know the love of Christ. I've have been reminded about one thing about Christmas this year: I haven't baked ONE single cookie...I spent a total of about 35 minutes shopping...I haven't been around the decorations at home...I haven't gone to one Christmas party....I have barely driven around to see any lights...and really it doesn't matter! What matters...a little bitty baby who was born on this night who came and died and now gives me the hope I need to get through this. I can have Christmas without all that "stuff"...but I surely couldn't have it without the hope I have received from Christ....and I surely couldn't make it through our journey with Kate...without Christ on my team.

Happy Birthday Baby Jesus!

Morning Report

Just a quick update as we're at the RMH with Seth this mornign playing in the playroom.

Kate's fever has been down since 6pm last night...however...they want her a good 24 hours fever free...so no extubation today! I hate seeing Kate lying there almost comatose...but in some ways...it takes some stress off extubation and allows us some more stress-free Christmas Eve time with Seth. Maybe tomorrow...it'll be our Christmas miracle!

They stopped her feeds at 1am becasue she had bad diarrhea....I was quick to tell them it was most likely from the antibiotics as she always gets "the runs" from those. But...none the less..we are back on Pedialyte and then will work our way back up to an ounce/hour of formula.

So...I guess a non-exciting day for Kate...just lots of rest! Seth and I will go swimming at the hotel and we're trying to get info on a kid-friendly Christmas Eve service here in town.

Will fill you in later today! Love to all!

Sunday, December 23, 2007

YoYo Kate!

Kate's fever seems to be like that of a yoyo! I think my last report stated it was down. Well...when I returned at 6 with Art, Reen, Scott and Laura...it was back up to almost 103. UGHGH! They packed her in some ice and gave her some Tylenol. I left for shift change....only to find her back at normal temp from 8-9p.m. No one is quite sure why she is spiking these fevers...I am anxious to hear report in the morning and get word straight from the horse's mouth.

They did stop her TPN...as she is now getting an ounce an hour of formula through her g-tube. The foley catheter (urine) is coming out tonight, after her dose of lasix. They are going to sprint her once tonight...and make the decision at morning rounds if they are going to proceed with extubation....another great reason to be there in the morning. Other than that...the plan is to just keep her calm and rested through the night.

It was great to see Seth and be able to tuck him into bed. When it became evident that Kate was going to be in Michigan for Christmas...Larry and Cathy gave us some money so that we could get a nice hotel suite! So...we are in a 2 bedroom suite with a fireplace...gotta make sure that Santa has a way in! Grandma (Cathy) is here with us for the next few days...and she and Seth are sharing a bed....we'll see if she is up for that tomorrow night. We set up a small tree and will try our best to have Christmas (for Seth's sake) and then take Kate some of her presents at the hospital. Seth is lovin' it because they have a pool and he has already been swimming. We will continue with our chores and show our face over at RMH so that we can keep the room. But...it is a blessing to be able to have room for a tree and presents...as that could not have happened in the tiny RMH room.

Well...I need to get some sleep as they do rounds early...and I want to take advantage of the "FREE" breakfast...but first a call to the hospital to check on Kate's temp!

Mystery Kate

Kate is just a giant mystery. When Nana and I came in this morning, her fever was on the rise again. When we left for lunch at noon...it was up to over 103. So...the plans for extubation are on hold today as more cultures (blood, urine and sputum) were sent off to the lab. We went to lunch and ran a few quick errands and we returned to Kate with no fever...in fact she was on the cool side. Hopefully, her fever is still remaining from the urine infection we know of and no new ones are growing in the basement labs. (We know sputum came back clear...the rest we should know in 24/48 hours.) The plans for the day now are for her to just rest and gain more energy. She continues to do well on her vent sprints and is resting peacefully. In fact...she has been asleep all the time that we have been in the room today.

Nana just left for Indiana. Andy, Seth and Grandma are in town, checking into our hotel suite (more on this later) and should be up here in a few minutes. Also...Art and Reen are in town for the holidays and are dropping by for a quick visit. It will be good to be surrounded by love ones. Love to all!

Saturday, December 22, 2007

Yeah Kate!

Just a little encouragement. Our visit with Kate tonight was good. She was awake for a good part of it! She is was pretty "ticked" about the tube in her mouth...but she was overall pretty calm. We took the restraints off of her arms and she clapped! And between the squints because I think her eyes itch...I know I saw a few little cheesy smiles! She passed her 2nd sprint...the numbers weren't as great as the 1st one...but still within acceptable range. Go Kate Go!

Fingerprints of Grace

I think I told you about our family photo shoot in November. What a blessing. Carrie is a talented photographer whose mission is to take photos of families going through crisis, especially with young and newborn children. She was amazing and I am so thankful to have these pictures of us....and she made making our Christmas cards really easy and beautiful this year! She was so patient with our not so patient kiddos! You can check out her amazing ministry at Fingerprints of Grace. If you are in the Indy area and need a great photographer, I highly recommend her...even if you are not in "crisis"

Thanks Carrie for sharing the love of Christ with us this year. I will always cherish these pictures of Seth, and especially of Kate.

Time Will Tell

Evidently, Kate wasn't too excited to see me! She was sound asleep for the 2 1/2 hours I was there this afternoon. When I arrived...she was on the tail end of a "sprint" (an hour long turn-off of the vent). They didn't want me to wake her so that her blood gas would be accurate. So...I waited until the news that her blood gas was great...then tried to say "hi!" No response...oh well...sleep and rest is the best thing for her right now.

So, from a respiratory standpoint...she is doing okay! She passed her first sprint and will have 2-3 more over the next 24 hours. They said...possibly trying to extubate again tomorrow afternoon. She looks good to me...except for the scabs on her face from the ventilator tube tape. Her weight is down...and it is obvious that she has gotten rid of a lot of fluid.

I asked to talk with the doc....my mom and I had a pretty serious talk. Either I was trying to avoid "the facts," pretend they weren't there or they are just becoming more evident as more time and surgical interventions occur and fail but the facts are: Kate has a very serious heart defect that is going to keep us "on the edge" for the rest of her life...however long that may be. She has 3 residual VSDs, 2 leaky valves (not as much as before surgery) and a leaking conduit (fake valve, which will always leak) and a less than perfect pulmonary artery system...That is a lot working against her. She is going to require life-long interventions.

Her success comes to down to 3 things:
1. If she can successfully come off the vent.
2. If she can come off some IV meds...particularly milrinone.
3. If she can tolerate feeding...enough to make her grow.

If she can do these 3 things...then we have a great chance of getting her home from the hospital in the next month (or 2). If not...then we hit a crossroads and have to decide if we go back in surgically or what? They (being the docs) can't guarantee us anything...yes, there are adults "out there" with Kate's heart defect and leaky valves and VSDs....but we have a long long road ahead. Only time will tell what is in store for our Miss Kate.

With everything going against Kate right now....I cling to this verse...and just change the who to "what leaky valves and VSDs"

What, then, shall we say in response to this? If God is for us, who can be against us? Romans 8:31


Back In Michigan

I'm back in Michigan...just in time to get kicked out of the room for shift change...so I will have to wait until 4 to see her.

According to Nana, Kate is holding her own. She is waking up...just a little. Her fever is gone and they have started feedings again.

I will update after I see her tonight...sending lots of love!

Friday, December 21, 2007

Just Resting

A quick note because I know what it is like to be looking for an update and none is there. Kate spent most of the day sleeping. Her fever is coming down and all other stats remain about the same. She will most likely stay on the vent for a few more days while her body fights the infection. Nana

Thursday, December 20, 2007

Rollar Coaster Ride of Emotions!

Well...what a day...not the best day in my book.

Larry's funeral was about as nice as a funeral can be. The pastor did a great job of giving tribute to Larry...and his many "hats" he has worn. He also described him as a "good and faithful servant" How true that is! Larry was always giving....always. Even when he was in tons of pain...he still was giving...offering to help us, when in all scheme of things...he needed the help! I have learned a bunch from Larry and we all will miss him terribly. Cathy did an awesome job of putting together a "celebration" of his life! It was evident from the constant 5 hour flow of people through the funeral home, as well as the comments I heard...Larry was a loved and respected man! Thank you to all of our blog readers who came and gave tribute to Larry and supported Cathy, Andy and me

As far as our little princess...well she had a bit of a rough day too! We got the call from Nana around 1:30, just as we got back to Cathy's...that Kate needed to be reintubated. Evidently the cause of her distress is a 103 degree fever and a urine infection. Her little heart just couldn't keep up with the stress that her body was going under. She is now breathing easy with the ventalator and after a little bit of a "total body shock" from the stress of the fever and reintubation...Kate is once again stable. I talked with one of the docs on the phone...he told me she is stable and now just needs a few good days of rest. She is now on more meds...to support her blood pressure as well as some antibiotics from the infection. They will keep her on the vent again for several days...until she is well rested and the antibiotics have had time to kick in!

This completely STINKS...it's just more than I can handle at times. I feel so bad for Kate and the constant stress her little precious body is under. She just needs a break. We all need a break.

In the midst of the sadness, tears and fears...we had 2 moments of joy.

As you know, Seth is fascinated with trash. At the funeral dinner today, he was lovin' taking our tables plates to the trash. Well...he soon moved onto the next table and the next. Then, Larry's brother, Lucky...gave him a $1.00 tip! Before I knew it...Seth had racked up over $14 in "tips" taking people's plates/napkins to the garbage can! Not a bad hour's work! Larry was always so diligent about filling Seth's piggy bank...thank you to everyone today...who so generously filled up Seth's bank. It was the cutest thing to see him continue to bring me the dollars to put in his pocket.

Then...we got an early glimpse of Christmas, as Larry and Cathy's church so graciously and generously put together several boxes of goodies and presents for us. Seth loved opening his presents today and we now have lots of great travel/hotel toys for Seth as he comes to Michigan with us this week. Thank you to West Walnut for the books, gifts, goodies, etc for us! Everyone is SO good to us!

So...3 of the 4 of us are completely drained! Can you guess who just wants to play? It's good to have a spunky 3 year old around in days like this...to show you constant glimpses of joy!

Wednesday, December 19, 2007

A Bit More News

Kate has had a fairly successful day. She had an echo this morning and her pressures are a bit better but she has a way to go in that department.
About 3 this afternoon she was taken off the vent and is still doing OK. She is agitated but Tom, her nurse tonight, says anyone would be because of the sedation and the slow reduction that is going on. Says it makes her very aware of everything going on in the room. Hoping that when the lights are dimmed, she has her bath, has another breathing treatment and people stop coming in and out, she will have a restful night. She has been awake quite a bit today.
Thanks for all of your thoughts and prayers. Keep them coming.
Nana

More Later

Kate is off the vent and is holding her own. Will post more later. Nana

News from home

Just a quick update from home! How awesome was it to see my boys! I picked up Seth from school...the look on his face...and the tightness of his hug assured me he was just as happy! 10 days away....that's WAY to long!


It's been a busy day...as I still had 6 gift baskets to make (part of a year-long contract). I just finished those and just have a few small details to attend to before hitting the sack...my OWN bed...and my feet won't even hang off the end! Thanks to my delivery team of Todd, Doug and Amy...at least I don't have to deliver the baskets tomorrow....because we head out in the morning for Portland.


Visitation/viewing for Larry's funeral is from 3-8p.m. on Wednesday and the funeral is at 10:00 on Thursday. We will most likely stay through Friday...provided that Kate continues to do as well as she did today for Nana! Nana is willing to stay for the week...so I can even get a few extra days at home! Thanks Nana! Thanks in advance for all your prayers of support to get us through the next few days.

Tuesday, December 18, 2007

Nana's on Duty

Nana reporting from U of M.
I made the trip safely as did Krista on her return trip. Right now I am at the RMH for supper, will do my chore and then head back to check on Kate about 8 when I can get back in the room.
When I first arrived Kate was agitated, as Krista mentioned. She has settled down since then. Had a fever but that is now under control. The good news is that she successfully completed her first "sprint". That is when the respirator is turned off except for a bit of pressure help to compensate for breathing through a tube, she breathes on her own for and hour to see how she does and then her blood gasses are checked. She did fine with the breathing and her gasses were good after the hour. She will have to do this several more times though before they consider taking her off the vent, but it is a start.
No news on a plan update for now. Will keep you posted.

Not-so-happy Camper

Kate has been awake a lot this morning...and she is not too happy about this tube down her throat. She keeps putting her arms up in the air as to say: "pick me up!" I wish I could sweetie...I wish I could! They let her have her "Popsicle" this morning. It's basically a small sponge they wet with water! She loves those...but of course, she is has a tube down her throat into her lungs...she can't have too much as the fear of too much in her lungs or her even biting the tip off. She is not happy about that arrangement! She was so cute this morning...her night nurse put red/green/white ribbons in her hair! She looked so festive...sorry I didn't bring my camera over today!

The plan from the cardiologists is to just continue to wean her off the vent. She has changed settings...where at least now...she can be weaned. It won't be today as she is still getting a lot of pressure support, even though she is initiating the breaths. I just hope that she will be off by the time I come back late Thursday or Friday. They are beginning her on formula feeds....just a slow continuous...but will slowly work their way up to a maintenance dose. They haven't spoken with Dr. Bove (surgeon) yet...so we don't know if the big picture plan has changed....I highly doubt it!

Nana is here now...and I am getting ready to head out! It's going to be a long drive as I am dog-tired as I haven't been sleeping! I think I will be using those ole' college tricks...like chuggin' Diet Mountain Dew! I'll be careful..and pull over if I need to! The thought of seeing my little guy should keep me going though!

Thanks for all the prayers and support. I so wish I could be giving you all good news! Maybe...later this week! We'll stay in touch from the Fort and I'm sure Nana will keep us up-to-date about Kate...SHE BETTER!

Monday, December 17, 2007

Everything Ventured...Nothing Gained!

We're sad to report that it doesn't appear as if this latest surgery has made much of a difference in the effectiveness of Kate's heart function. The pressure of her right side is still equal to that of the left. (It should be 1/3---the docs would be thrilled if we could get it to 3/4) There are still 3 remaining VSD's. Two are of no importance...but one is a 2 on a scale of 1-4.

The plan as of now (the surgeon has yet to be consulted, due to being in the OR) is to see if Kate can come off the vent. If she can...then see how she does and manage her medically through medicine. If she can't...they may be forced into surgery. Right now...the risks outweigh the benefit they expect from closing the VSDs. However...this may all change by the morning...our DEFINITE plan will be finalized in the morning,.

Kate is a complex case and she has a myriad of issues all working against her. In a "normal" working heart/lung system...these VSD's would be of no importance. But...Kate has lung issues also. Due to her heart defect, her pulmonary arteries and branches of her lungs are smaller...which adds to the increased pressure in her heart.

Our only true hope left right now is that her lungs are still compromised, with patches of collapse and once her lungs heal a bit..it may relieve some of the pressure. If not...we are exactly where we were after the last surgery.

And that scares us...because, as you know, Kate hasn't been leading a productive life with high pressure in her heart. We have basically been in the hospital since July. She is dependent on IV diuretics...and we can't come home on IV meds.

The doc tonight, who specialized in lung issues, told us we have not yet exasperated the medicine route yet...she isn't yet on the highest level of meds.

We don't know what to feel or think right now. We feel bad for putting Kate through open heart surgery for nothing. We are overwhelmed at the thought of living the next weeks, months, years as we have the past 4-5 months. We are disgusted that realistically we will be here for at least another month. We are sad about what that means for our family dynamics. We're drained.

Sorry for the late report...we have been waiting to talk with doctors. Andy just left for home...I will leave tomorrow once Nana gets here!

Happy Birthday Lucas!


Today is Lucas's 5th birthday
What a great little guy he is! Seth is with them today...surely enjoying a great "snow day" with the cousins! I'm sure there are to be lots of snowmen and snow fights! Guess they had a little cake celebration during their weekend trip to Ohio!

We love you Lucas! Sorry we are missing your party tonight! Happy Birthday big guy!!!

THE POLAR EXPRESS!

This past weekend, Seth was taken on a real treat with his cousins! My brother, Doug and his wife, Amy took him on "THE POLAR EXPRESS" It's a real train in Ohio that actually goes to the "North Pole". They wore their jammies, got a bell and even got treats on the train! Sounds like so much fun! Thanks for taking him on this wonderful journey! Seth, Lucas & Santa!
The 3 boys: Lucas, Elijah & Seth
Outside the train station
Seth and his antlers!

Seth and Santa....right after Seth got his bell!
We are so blessed that Seth is so loved on while we are gone with Kate! Thanks for lovin' on him and building memories with our little guy!

Takin' her away again!

They took her down for the cath at Noon! We're hoping and praying for the best! More waiting....waiting...and waiting! I'm getting tired of signing consents and hearing the risks of procedures...it gets to you! Praise God (and knock on wood) that she has been safe through her mutiple procedures/surgeries.

Miracles can happen!

Kate had another restful, peaceful night! She is pretty calm for the most part...except for a few wiggles and leg kicks. They did take out her two chest tubes from surgery this morning...that should make her feel much more comfortable. She still has a lung cavity pleural tube (they placed the day after surgery)---it's still putting out fluid.

This morning they are prepping her for a heart cath around 11-12ish. She is getting some blood platelets to help with her clotting during the procedure. There is this faint chance that they MAY be able to do something to fix these VSD with the catheter during the cath...HOW INCREDIBLY AWESOME WOULD THAT BE? But..knowing Kate we aren't holding our fingers and are expecting to hear of another open heart this week. Who knows, but God..but boy...are we due for the unexpected good news!

So..right now we're just hanging out...waiting on them to come get her. We probably won't know any definite plans today as Dr. Bove (surgeon) has a full case load today! We are making all plans for us to get to Portland this week. Larry's visitation is on Wednesday afternoon/evening and the funeral on Thursday morning. Andy hopes to head back tonight and I will hopefully head back tomorrow once Nana comes to stay with Kate!

We continue to meet amazing families...going through so many struggles, trials and joys. We met a great family from Minnesota who is heading back today, once the snow stopped (we always seem to meet the great families, the day before they leave!) Our roommate, Mikey...is a 4 year old boy. He is doing well from his heart surgery and headed to Toledo now for some small bowel work!

Prayers for a miracle during her heart cath today...but if not...that they at least find out the info they need and know how to proceed in fixing them! Today...the cardiologist referred to Kate's VSDs...as "the hardest to close in history!" Great, Kate...you're making a name for yourself! We really don't need to be breaking any world records!

Sunday, December 16, 2007

Next Best Thing

We've had a few more glimpses of Kate's eyes and she is becoming more and more awake. Of course, I couldn't capture her eyes totally open..but thought you might enjoy a quick video glimpse of her chomping on her tube....when you can't have a paci...I guess this is the next best thing...at least for now!

Snow and Blow

Andy writes: We had to take a ride from security this morning to get back to the hospital. The snow continues to fall and is getting pretty deep with lots of wind. Kate had her eyes open when we arrived and was looking around. She has always been a little nibby(she gets it from her mother) and I think this will be an asset to her. She never wants to miss anything! She had a good night and the bronchial spasms have stopped. They have come down on the vent settings and she is breathing a little on her own. Her lungs still are wet on the x ray and partially collapsed but....overall, pretty good news in the world of Kate. We have been told that she is second case Monday and they will take a closer look at the holes and the pressure of the heart. That will determine if they decide to go back in and try to fix the holes and hopefully will show why the pressure is as high as it is. We have met many parents in similar situations and their kindness and love for their children is very evident. Thanks again so much for all the prayers on Kate's behalf. She is a very special girl.

Saturday, December 15, 2007

Much Better

Kate is looking much better today. She has had a pretty uneventful day. She had to have an IV pulled and a new one placed. She was much more calm after the IV was pulled, so the nurse just feels awful that possibly it was causing her pain. She has had a lot of urine output today...which is only adding to her improved status. Her lungs sounded great this afternoon...but have become a little more wheezy through this evening...nothing terrible though. They have made small changes to her vent settings and have turned her rate down. She is initiating a few breaths here and there.

They were supposed to start IV food (tpn & lipids) today...but it came back prepared wrong because they had her having a latex allergy. So they didn't have the proper line to get the fluids in....so after the cardiologist cleared it with us that she DIDN'T have one...they reordered and she will get the nourishment tomorrow. Add that to that a couple days ago when the lady from the tobacco commission came and started lecturing us on the affects of smoking. After a few minutes I stopped her and said: We don't smoke!" She said "OH, I'm sorry...the chart says you did!" Oops! Makes me wonder what other things are chart says!

She wakes up occasionally...for brief glimpses of the world. Tonight, Andy asked her how big she was...and she raised her arm! WHAT A TROOPER!

Andy and I are much rested....we went back around 9 and both woke up around 1. That was a much needed 4 hours.

The plan still is to have a heart cath on Monday to see what the pressures are doing inside her heart and where the flow from the VSD's is going. We will know so much more then.

Sorry for the late update...not having Internet in her room really cuts down on our updating opportunities. Stay safe out there this weekend...be careful when driving!

Early Morning Rounds

Andy and I got up early this morning so that we could be there for morning rounds. She was stable through the night...she just needs a lot of sedation to keep her comfortable. They are still battling these bronchial spasms and trying to get those calmed down. They are doing some serious diaresing (sp?) and trying to get the fluid off...that should help! Heart wise...she is doing great...her blood pressure, gases, profusion are good. The plan for the day is to just continue to get fluid off, give her some blood since her hemocrit is low, actively work on the lung issues and keep her comfortable. She looks better this morning than Andy said she did last night!

Andy and I are hoping to take some breaks today...we're back at RMH for a morning nap and will do some shopping or possibly even a movie tonight...provided she continues to be stable.

Will update this afternoon after we go back in a few hours! Thanks for supporting us through this...love to all

Friday, December 14, 2007

HOPE

We've put a lot of eggs in this basket! Andy and I were both so HOPEFUL that this would be it...that this would be the magic bullet that fixed our daughter's heart! As of this morning....it looked that way. As the day wore on...that HOPE began to vanish.

Kate has remained stable throughout the day...however...she has decided that she will not take the easy road. A routine post-op echo showed that we now have 2 residual VSDs and the pressure in her heart is really high...equal to her blood pressure! The theory is that the high pressure in her heart is "busting out" some of the sutures in the VSD patch. As of now...they don't know how it will affect Kate. They are planning to let her rest and re cooperate through the weekend and then do a heart cath on Monday to see exactly how these mysterious VSDs are affecting her heart function. The decision would then be made if they need to AGAIN go in and fix these...or if she accommodate them for months/years.

In addition...they had to place a chest tube to drain excess fluid in her pleural cavity (area around her lungs). Also...she was put on steroids for her lungs. She is having some bronchial spasms due to the tube irritation and has been wheezing a lot! Her lungs can in no means accommodate being off the the vent...so we are stuck with it at least through the weekend. And...she is having rhythm issues still as her heart conduction system tries to work it self out. They are keeping her super cool with ice packs in an attempt to take some workload off of her heart. That can't be comfortable. She has had lots of tests today and probably has not gotten a lot of rest.

Through all these trips in with "bad news" they continue to tell us she is doing well! What in the world does that mean? Basically, her blood pressure is staying stable and her numbers look good. However, we have heard all of this before and reality is hitting us that this is probably reality for Kate's heart and we won't have a magical surgical fix.

Today has pretty much wiped us out. I can say for myself that I've had about all I can handle. I know I have no other choice...but I'm wearing thin...and I know Andy is too! Yes...we have to cling to our faith ...but right now...it's hard...really really hard. I'm running out of hope.

Fortunately, we have been surrounded by love and prayer today! God knew and placed a lot of people with us today to support us: Pastor Chuck made the trip again to pray with us and deliver a bag of goodies! Our med-buddy Megan came and hugged us and sat with Kate while we got away. Our favorite Doc, Dr. Patrick came from the floor for some words of encouragement. Teresa from Andy's school (and her husband and 2 kids) drove all the way here (6 hours) just to deliver cards from the kids and gifts from churches and the school teachers. My friend Karla took the afternoon off work to just sit and talk with me (and flash her BADGE to get insider info, and call Nana when I was too upset and hook me up with vitamins and sleeping aids.) And...Melanee from home came for the afternoon to sit and pray and encourage me...and just let me cry! Wow...when I think about all that...God does provide.

Now....we are in need of some HOPE...I know HE can provide even more than friend support...and right now we need it to show up big time! We now know we are again in it for the long haul! Miracles need to happen this weekend with the pressures in Kate's heart. The docs have not given up...and we know that in actuality we are just beginning this recovery road after surgery (even though we have been here over 3 weeks already) But...we don't know right now...we just don't know if Kate's heart will ever function effectively and what that means for her long term. We just don't know...and that scares us.

The little fighter!!

Kate had a really good night! She is doing extremely well! Her heart rate was fast last night...but it seems to be due to her being in "junctional" rhythm. Basically, her heart isn't conducting the right way. This is common to post-surgery heart kids and she has had these issues in the past. Her heart rate is down this morning, but there is still some thought she is in junctional and not normal sinus rhythm. I"ll have to get that figured out.

We experienced was must be "grand rounds" this morning...just like you see on tv...except with 15 people! It was crazy...cardiologists, surgeons, Nurse Practitioners, Nurses, pharmacists....and who knows who else at what "level" of learning. It was interesting to hear them discuss her and then give the plans for the day. They kept asking if her past residuals VSD's were intentionally left open! I sure hope not!!!

So the plan was to just let her rest. She is a little wheezy in the lungs...so they will give her breathing treatments through the day. She was getting a post-op echo this morning when we came back after breakfast. I think she is getting a little more blood...but other than that...no major plans for the day!

The little stinker is waking up a lot and needs lots of sedation as she is grabbing at her tubes and even wanting to sit up! She found a bar next to her bed and tried to pull on that to sit up. Then..once her arms were restrained, she tried to pull against those to get leverage! She is a fighter!

So...we're encouraged in this aspect... a little nervous about the lung issue as she always has lung issues that keep her on the vent for extended periods of time! Time will tell. Hopefully, she will rest today...as well as Andy and I. We are both pretty exhausted....physically, emotionally...but since she is out of it and has one-on-one care it is easier to leave her to get some rest!

She still looks great...considering all the events of the past 24 hours! Go Kate Go!!!

We are in a pretty strict ICU setting...so we can't really be contacted at the hospital. We will post our new # once she leaves ICU. Leave a voicemail on our cell or at the RMH and we'll call you back.

A Man of His Word

My dad told us that he would hang on until he knew Kate had made it. He was told of her successful surgery last night and this morning at 3a.m. he went home to be with his Lord. Dad was never afraid of passing due to his relationship with Jesus and often shared that with us. I have no doubt he has already hit a lake and has a rod and reel in his hand. Dad and I spent many, many nice days fishing with my maternal grandfather and I like to think dad and grandpa are literally in heaven enjoying themselves.

Today I have been very blessed to learn I will get to spend more time with my daughter and have been reminded of how blessed I was to have such a father. Please pray for my mother. My mother and father met when they were very small children and married right out of high school. Even though they both just passed their 60th birthdays, they were married for over 40 years.

Thanks again for all of your prayers!


"For my Father's will is that everyone who looks to the Son and believes in him shall have eternal life, and I will raise him up at the last day."

John 6:40

May Kate and Seth always know how much their Pampa loved them!!!

Thursday, December 13, 2007

A Brand New Woman!

Andy and I have seen our little angel and she LOOKS SO GOOD! I was amazingly shocked at how good she looks...so much better than past surgeries. She is a little pale..but blood is on the way and that should pink her right up!

Our chat with Dr. Bove went well. He started the conversation by commenting on how cute she is...his direct quote: "That cute little face, I just want to take her home with me!" How cool would that be to have a live-in heart surgeon!

So...he said the hardest part was getting past all of the scar tissue. They took their time...and got to the heart with no more damage. He had 3 main areas of repair:

1. The triscuspid valve: he repaired that and it is not leaking at all right now! WOOHOOO!

2. The conduit (fake pulmonary valve) He replaced it with a bovine valve (yeah, a cow!) I guess it is all the rage in Europe! They are approved in Europe, but not yet by the FDA in America. This was just thrown at us this afternoon...but his assistant told us he uses them all the time, they have done clinical trials with them and evidently he uses them a bunch as they come in a variety of sizes and have long-term prognosis. It went well and is in place. WOO HOO!

3. The next issue was her VSD's--yeah..plural! He was able to repair 2 of the 3 they suspected from her pre-op echo. After looking and looking, he couldn't find the 3rd so he took her off bypass and restarted her heart. The echo they then did, once the other VSDs were closed, showed that the remaining hole was coming off her aorta (where the patch was attached) He had to make a judgment call of which was worse: leaving the hole or basically starting all over again and putting her back on bypass and stopping the heart. He and the cardiologist in the OR opted to leave the hole, as it isn't too big and based on all of the other repairs...shouldn't cause too much of a problem. Guess Kate is pretty persistent about these holes!!!

He thought her prognosis is good and she should be so much better. He can't guarantee us that she won't need oxygen, but said she shouldn't.

And the nurse said she is super stable and behaving appropriately! How unlike Kate! No major plans besides blood tonight and they even have been "suggesting" working on getting her off the vent in the next couple day(s) How amazing would that be? Her blood pressure is perfect. Her pressures within her heart are right-on! Her heart rate is high...but that is typical of needing blood and being post-op! They aren't worried about it, unless it affects her blood pressure.

So...life is good right now! Praises to our almighty healer! What a load off of our shoulders. We know we aren't out of the woods yet...so we still need all of you praying...but wow...WOW!!!
We will probably stay an hour or so tonight and then head back for a good night's sleep (if there is such a thing!) Will update you in the morning regarding her night! Love to all of you...especially all those faithfully praying us through the day!

She's Out

This is a short note from Nana. Kate is out of surgery. The surgery went well and Dr. Bove was able to do a lot of repair. The Internet is down at RMH right now so they can not post since they are over there having a bite to eat . Krista and Andy will go back to the hopsital about 8:30 and be able to see her. After that Krista will post the details but they just wanted you all to know that things went well. PRAISE THE LORD!! Nana

Update 2

Just got word...she is off bypass and still stable. We don't know the specifics yet..will send more word once we talk with the surgeon....but they expect her in the ICU in the next 30 minutes.

Praise God...she made it through...now just to know what they did and her prognosis! More later!

Update

We aren't getting as many updates as we would like but last we heard (around 5:30ish) she was doing fine and there were "in" and she was on bypass and they were working on the heart...but they still expect a few more hours.

It's a long afternoon waiting. The waiting conditions are less than perfect...but we are making it! Thanks for all the comments and words of encouragment and prayer.

She's in the OR

Well...our little girl is back in the OR. We left our room around 1 to go to pre-surgery and the anestheologists took her at 1:35. They promise us she is in great hands. Our nerves are up...our tummies upset...it's going to be a long long afternoon. Will fill you in as we know!

Grumpy, Hungry Baby!

That's what we have on our hands....we just finally got her to sleep after her fussing all morning long. Poor thing...she just wants a drink! We're still waiting. We haven't heard a definite no...but of course, we haven't heard that it is on. We're frustrated...we're tired...we're impatient...and we're getting hungry....but we don't dare leave Kate or eat in front of her!

We asked our nurse and she said between 11-2...right now, I have this sinking feeling that they will cancel the surgery around 2. But...all we can do is wait! Will let you know as soon as we hear something!

Wednesday, December 12, 2007

Drawing Near

Kate's day went well...she is in great spirits...except for when the Grinch came to visit today! Evidently, Kate isn't into "men in costume" She and daddy hungout most of the afternoon while I was back at the RMH doing laundry! She is totally zonked tonight and sleeping like an angel.

We are cautious about tomorrow. Dr. Bove came and talked with Andy today and mentioned that his first case was a difficult one! Hopefully, not too difficult that he won't be able to do Kates. Plus...we have the impending "bed issue." We are anxious to get on with all of this...but still want what is best for Kate and what is in "God's timing" As far as now...all things are go for tomorrow. Her feeds will stop at 2 am, Andy and I will come back around 7 and we will wait...and wait...and wait! As always...we will keep you informed.

Andy talked with his mom this evening and it seems that his dad is nearing his last days. His organs are beginning to fail and he is non-responsive to the many visitors he has coming to love on him and Cathy. It is tough...really tough...but Larry is a believing man and he is on his way Home. Our prayer now...that he goes in as least amount of pain as possible...and peacefully. Please pray for God's PERFECT timing in the midst of this and Kate's surgery...Andy is being pulled...way too hard right now...prayers for comfort for all of Larry's family is greatly appreciated!

Through all of this...we know one thing to be true: GOD IS GOOD....ALL THE TIME....ALL THE TIME...GOD IS GOOD!

Happy Birthday Nana!

Happy Birthday Nana! I love you! I love it when you stay with me and play with me and read to me and take me on walks and love on me! I wish I could be there to give you a great big birthday hug and kiss...but I'm trying my best to get better....you told me that was the only gift you wanted! I'm trying!

I hope you have a fun day...tell Seth to give you a hug from all of us in Michigan! We miss you!

Here's a picture from your b-day last year....look how little I was!

Next year I"ll help you blow out your candles again!

LOVE YOU!!!

Kate

Bustin Loose!

So...we busted out of the 5th floor last night! We just had to get away...so the 3 of us went downstairs and had icecream in the cafeteria! Icecream always makes up for a bad day! She loved it! I don't know what she loved more...the icecream or getting a brand new view! There still wasn't much to look at but boring hallways...but she was having fun.

We've adjusted to our wait! There is always a reason...right! Well...we figured out one yesterday! We were 2 days short of filing another intensive care stay claim to AFLAC. (There has to be 30 days between stays...and we were only 28 from our stay for her G-tube placement.) Well...now we won't go into Intensive Care for 2 more days! HMMM??? Funny how some things work out! Maybe now the kids can get a fence in the backyard!

Otherwise, Kate is doing well! She had a great day yesterday...and we hope for another today! Kate lovin' her popsickle!
Getting our pre-surgery bath from Louise...well at least she was clean for the day! Kate loves playing with Louise in the mornings before mommy comes back to the hospital.
Dr. Patrick....one of our favorite docs! Can you tell Kate was in desperate need of her morning dose of Lasix? She was a little puffy around the eyes!

Tuesday, December 11, 2007

48 Hours

That is our wait! Surgery is re-scheduled (for the 3rd time) for Thursday. She is still 2nd case..which means there is that "possibility" she could get bumped again..so now you know what to pray for in the next few days. I'm trying to keep this all in perspective. The hospital is really full right now...there are a lot of sick kids...and evidently, some are worse off right now than Kate! If it were my kid...I would hope they would keep Kate in ICU and bump another "non-emergency" case! Yeah, it's hard. I don't want another sleepless night. I don't want another morning of waiting. I don't want another morning of seeing my kid hungry because they stopped feeds! But...that's the way it is! And someday...I"ll know the reason!

Evidently, maybe it was because Kate wanted presents! A bunch of pilots came through from the NW hub here in Detroit! Kate got a new bear (that's all she needs, another stuffed animal--but it's sweet!) and she even got her wings! Dad got a NW t-shirt! The pilot handed him a large shirt! Andy hopes he uses his instruments and not his "judgment" in flying planes...cause Andy hasn't been a large since 3rd grade!

So..the toys are back out of the van and Kate is back in her own jammies! We'll hang out for a few more days and do it all over again on Thursday. I was (am) so encouraged by your comments...please know I check for comments as often as some of you check for updates! I love this comment from Anita...a teacher at Canterbury. Thanks Anita for the wonderful insight!

"I am so sorry to hear that Kate couldn't have the surgery today. Of all the reasons - no bed. It made me think of another baby that had no bed in the inn. Jesus must have Kate and what is best for her in his hands."

Frustration

Well...after waiting and waiting and waiting....we were just told: Her surgery got cancelled. There is no bed in the ICU for her once she comes out of surgery. We don't know anything else, other than it won't be today!

UHGHGHGHGGH! They keep telling us that they will let us know a new date....we keep asking tomorrow? this week? No answer! UGHGHGHGHGHGHHGHHHHG! Can you feel my frustration right now!

Well..we're starving...we got Kate food since she hasn't eaten since 2am...and our wonderful Pastor made the 21/2 hour drive for naught! So...we're gonna eat lunch with him and then resume our normal activities of the floor. We'll go get all her toys out of the van and hope for the best.

Will update when we know a new date! Love to all!

It's Here!

Well...it's here...the big day. The day we are counting on to change our...and Kate's lives. We have signed consent and now we just wait until around 9:30ish when they will take her down. We have yet to meet Dr. Bove...I guess I'd rather he be in his office studying her case.


They are expecting a 7 hour procedure with getting her drugged, hooked up, on the bypass...then the procedures..then all the unhooking and recovery....could be a long long day sitting and waiting.

We will keep you posted as we here...they say...NO NEWS IS GOOD NEWS! She had a really really restful night and they say she is in great shape for surgery. Glad to know she is starting out ahead of the game for this one! I'm glad we spent the last 3 weeks here getting her in top notch shape for surgery.

A few pictures of our smiley girl to keep us smiling through the day! Poor thing...doesn't know what is going to hit her...but I just pray that she wakes up and within a few days...feels SO MUCH BETTER.
Kate and her medbuddy, Megan. Megan is a 1st year med student who comes and gives mommy and daddy a break! She is awesome and just walks and walks Kate!

Kate in front of the Christmas tree...she loves touching it with her toes...and eating the bells that don the tree!

Monday, December 10, 2007

Double Dose

Kate was her normal stubborn...but completely ADORABLE self this morning. Her sedated ECHO was scheduled for around 10ish. They wanted to sedate her so that they could get some really really good pictures of her heart and the complexities that go along with it. I appreciate that...but hate that she had to get drugged in order to do it.

So..they gave her the normal amount of sedation...and 20 minutes later Kate was still ready to play. She was banging her foot on her toys and waving to everyone in the room. (We got a new roommate!) After we finally turned out the ligths, drew the "magic curtain" and I snuggled with her, she fell asleep! Until...we put her in the travel crib to go downstairs. She was wavin' "bye bye" to everyone. I had a feeling she wasn't out of the count.

Andy and I left her in the echo room to grab a quick late breakfast...and when we returned, we found out she had to have a 2nd dose to get her still. Crazy girl...she just doesn't want to miss a thing! The echo went well and they got really good images of the VSD....they are being very particular about finding out where it is...how big it is and if there is/are more than 1 area. I guess I would rather a sedated day than finding another VSD after tomorrow.

We got back to our room...and Kate was awake...waving and smiling as she went by! She ate a quick bite, but is now back asleep. I guess this might be the norm for the day...frequent naps.

Our new roommate is a little heart baby...Jack! He is 3 1/2 months old and had his 2nd heart surgery last week. His heart defect requires a series of 3 surgeries and this was #2. They came all the way from South Dakota to have Dr. Bove do the surgery! He's a cutie...and I was pleasantly surprised to find them as our roomies this morning as I had made friends with his mommy in the hall. Too bad...Kate will only be shackin' up again for one night before we move again! She evidently has a thing for younger men named Jack...as that was the name of her 1st roomie when we 1st arrived.

So...just a day of rest and "gettin" ready. Her surgery is the 2nd case...which means it probably won't be until 11-12ish. They are expecting a 4-6 hour surgery by the time they get her on the pump and through the scar tissue. We are so anxious for tomorrow and the news from post-surgery....it's a make it or break it day for us!

Seth is back with his cousins for a few days! He just loves it there and all three boys have a blast. I called to say goodnight at 7 and they were all asleep! I guess they just played too hard!
Larry was taken to the hospital yesterday...just to regulate some medicine and hopefully let both of them sleep! Larry wasn't sleeping more than 20 minute stints...so neither was Cathy. They are going to do an MRI to see exactly what's going on in the brain. Plus...with the nasty weather, they wanted him safe...just in case! Guess the ice is pretty evil down south!

Sunday, December 9, 2007

Prayers and Pennies

Andy and I just wanted to take a minute to express our deepest gratitude to the outpouring of love and support we have received from so many.


For the prayers: We have definitely felt the prayers so many of you have lifted up to our Heavenly Father for Kate and Larry. We were humbled by the prayer vigil held at Covenant all day on the 27th. What a blessing to have Kate and our family lifted up in prayer all day long. We were so encouraged by the notes and scripture references. Also...we know that daily so many of you are remembering Kate in your prayers! We are confident that God hears and delights in each petition said to him! Thanks for praying...with us and for us! What has been so cool...the young and old have joined in on the prayer effort! We received this picture of a prayer request from our friend's kindergarten age son! Kids looking out for kids....God has to be smilin' about that one!
(I hope you get better Kate, Love Stuart) This was HIS idea...Stuart wanted to say a prayer for Kate...all on his own! That is AWESOME!
Matthew 21:22 If you believe, you will receive whatever you ask for in prayer."
For the pennies! Wow...what a blessing! We have been amazed, humbled, thankful and ever grateful for the financial support we have received from so many of you. What a comfort to not have to worry about the travel, food and lodging expenses that come with "living" away from home for 4-6 weeks. I can't thank you enough for "easing" that worry. So many of you have given us so much....someday, it is our prayer that we can give back to another family in need....just a token of what has been given to us.
We love the cards of encouragement and of Christmas wishes! We love reading your emails and comments of support! We love the visits from friends and family. We love having the comfort that our son (and cat) are loved on in our absence. We love having wonderful meals provided for us when we are home. We love that so many of you are helping to make this Christmas away from home special in it's own way. We love pictures and gifts from other kids, for Baby Kate. We love knowing we are not "alone" in this journey.
As surgery (again) approaches...as the blood gets drawn, the xrays taken and the echocardiogram scheduled, as the unknowns of surgery become more "real"....we take comfort in the abundance of love shown to us by our friends and family...even by our "web friends"...but most of all by God. We have nothing else to do but TRUST..trust in HIM who IS more than able to beat this...So I cling to this verse...the very 1st verse I memorized years ago!
Proverbs 3:5-6
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.