Friday, August 31, 2007

So Done


Kate has had another pretty good day...except for the fact that she is getting so spoiled and wants only mommy holding her. She isn't much into being alone in her bed. She has been eating well and we have ordered off the room service menu for both lunch and dinner. She is able to sit up in the highchair and feed herself. I feel like she has really turned a corner today in the fact that she is so much more social and fun. But as you can see...when she is done...she is done!

We were able to get out and take a wagon ride...she really enjoyed that. Not too much too look at as we could only go on the 2nd floor...but it was fun to get her out of the room.

For all the mommies...

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us toMcDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.

Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that GOD has given me the greatest gift ever given. I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank GOD for you, and ask Him for nothing, except one more day.

Thanks Melissa for sending this to me....and for a good cry...is that enough of a tear jerker or what?

FINALLY!


We are FINALLY getting consistent ear to ear smiles out of Kate. She is in great spirits right now and is having tons of fun with playing with us....especially Gayle. She is lovin' peek-a-boo and playing with her balloon. It's been a long time...since she has smiled...the best part is that it shows she is feeling better. YEAH! She is even doing a little bit of a laugh! PRAISE GOD!

We are trying to get some more protein in her diet. So...we will be experimenting with new foods and we have added some Carnation Instant Breakfast to her milk 3x a day. Otherwise, not many changes to her routine today. The Administrative Assistant just went to Kroger and came back with 40 jars of stage 3 food with protein in them...just for her! She is the princess around here! Whatever Kate wants...she gets!! Plus Marilyn (the AA) just brought in a backpack filled to the brim with crayons, markers, clay, paper, etc. for Seth! We are loved!

It's getting more fun as she is able to play more and more. We have started physical and occupational therapy a couple times a week so that should get her more strength and control...with that huge IV board on her hand. Here she is playing with her new balloon from nurse Christie! (I'm sure not all of the patients get personal gifts from the nurses!)


Last night we had a special photo shoot with Dr. Chatan. He has a special place in our hearts...as he was the Intensivist on duty when Kate came back last Tuesday! He's our hero who saved Kate's life! It was so cute...he would only have his picture with her if he could hold her! How sweet is that. Everybody is lovin' Kate!

Thursday, August 30, 2007

Not For Long

SUCCESS!


BUMBO!

I've learned a couple things after my stay in the PICU. ALWAYS ASK! I can't tell you how many things we have received, gotten, learned, etc. from just asking. Today I asked if they had a BUMBO seat...the Child-Life lady said "No"...but returned a couple hours later and said "I"ve worked my magic" and loaned us a brand new BUMBO. For all you out there who have no idea what a BUMBO is...it's a soft cushiony seat that supports new sitters....or in Kate's case...those who are weak and need some extra support. It's been great today to get her up sitting and playing! She got her 1st experience with hospital room service tonight! She didn't seem to mind...but it was pretty bland to my taste. She did amazingly well eating her mac & cheese and carrots! Chocolate pudding was the perfect thing to top it all off. I am really amazed at how well she has been eating....almost better than pre-surgery. And...she hasn't thrown up and refluxed a single ounce since our return trip! That in itself is a huge blessing!
She has been pretty "needy" this afternoon/evening. She will fall asleep in my arms, but the minute I lay her down...she starts crying. Gayle has her currently...and it's not going so well. I've always wanted a "momma's girl"...but this is the extreme! The only relief...when she is chewing on her biter biscuits...those are a God-send!
So...hopefully, another bottle at 11 and she will sleep through the night! She has been doing pretty good at that the past few nights. Another good day!

Snack and a Nap


Kate had her morning snack and is now taking a quick nap....she must have been pretty tired because she didn't even get her bib off. Her liver and kidney numbers are continuing to come down and the platelettes are coming up. Her two big issues right now are:

1. Magnesium: They will give her a little by IV today. As soon as her liver completely recovers it should regulate itself. Her potassium which has always been a battle is consistent.

2. Oxygen: She bounces all over the place with her O2 levels. The cardiologist said that a little bit of O2 will only help her heart. So...we have a cannula back on her. Why stress her out and make her work extra hard? She is fine with it, as long as you don't touch it or try to adjust it.
So...a good morning. We are going to try and get some physical and occupational therapy started so she doesn't get too used to laying around. Will let you know how that goes. She just woke up and I think she may be hungry. Gotta get to work!

Dragonfly Days

Seth and Mrs. Bearman in the Dragonfly Class!


Seth and I had a fun day at Leo Preschool today going on a scavenger hunt in his room and throughout the school. He is a "green dragonfly" and is in Mrs. Bearman's class. She has a very contagious spirit about herself and I am thrilled about the potential I see in Seth this year. He loved every minute of our 30 minutes there and had a grin from ear to ear! Just to see his face light up every time he saw his name or picture was priceless. He will be going on Tues & Thurs. afternoons (12-2:30). I think there are 8 kids in his class. How exciting. I'm so grateful that Kate behaved herself and I was able to spend this "milestone" with Seth. It's about time she started sharing her parents. I can't wait to take him and even more, pick him up next Tuesday. The stories I hope to hear!

I had a great time with Seth the last 28 hours. What a sweetie he is...the best part was when he crawled into bed with me and we both slept until 9:30! We got lots of laundry done...did the preschool thing...ran some errands...played at Burger King with friends... and just spent lots of time cuddling and reading books. It's days like these that really reinforce how rotten this whole experience is. I am just so grateful that he is in such wonderful hands when I'm not with him...and especially daddy's for the next few days.

Wednesday, August 29, 2007

No News is Good News

Kate enjoying a new vantage point from the couch!

I'm hoping that you are all thinking the above is true...as it has been a busy, but good day. I am back in Indy since about 6:30 and Andy is back in the Fort as of about 9:30. Gayle is back here with me for the next few days as Andy is staying home with Seth through the weekend.


Kate has been having a good day. She had to have her central lines from her leg and sub/clavian (her chest) removed as they weren't working. They started a new one in her left wrist, as it is required in ICU to have access. As far as I know, she is not getting any IV medicine right now.


According to the cardiologist, her right side of her heart is still moderately diminished. The pulmonary arteries are of decent size..so now it is just the task of getting her right side to work really effectively. We continue to hope that with her 3 medicines and time to recover, it will do it's job. The biggest mystery right now seems to be why she needs so much magnesium. I am in the boat that she is still just a week out of major trauma and just needs some time...she'll get there.

She has been grumpy...mostly from her teeth. As long as she is chewing on a biter biscuit or popsicle she is happy. She has been eating extremely well. She just had a bath and is in new clean footed jammies...she looks so comfortable...and so cute.
Assuming normal "feet up" position

Jessica told me tonight that daddy did a real good job with Kate...I knew he would. She had to give him Props! Thanks also to Grandma and Pampa for their time spent with Kate. And thanks to Nana and Oompa for watching Seth during Andy's and my tag team drive! We are blessed to have so many on our team.
SOOO BIG!

SOOO TIRED!

Tuesday, August 28, 2007

Teething

Well we made it. I think I managed ok with the help of my parents, and a medical staff of about 50, to make it through today. Krista was gone today and got to enjoy some much needed and deserved time at home with Seth doing preschool events, so I was in charge of Kate's care. Today reasured my beleif and faith in Krista's ability to take on the huge job of managing Kate and that she has much more of that ability than I do. I do thank my parents for coming and helping. I know it is not easy for them with Dad's health but they love Kate and no cancer can stop them.
Kate's liver showed even greater improvement today which is a sign that the heart is working better. She is now off of the Milrinone and in the next few days we will see if she can continue to be off of it. She ate pretty well today with the biggest problem being that she has four new teeth coming in all at the same time. Poor kid! I really think that Kate will be the kid who breaks her arm at summer camp and will need to have braces on her teeth more than once. She really enjoyed her bottles of nice cold milk and her popsicles today. Tommorow we hope to see even better lab numbers and I hope she is much more comfortable with her teeth!

I am constantly struck at how blessed we are here in the PICU. So many people have passed on kind words, deeds, visits, (my parent's new pastor from West Walnut and his family stopped in), prayers, etc... that we are very humbled. We are not real sure how all this will end but we do know that a plan exist because there is a divine planner and we take assurance in that.

Big Step for Mommy

I've got to take a big step today as I am coming home and leaving Kate here in the ICU for a night! She is in completely capable hands as daddy and grandma and Pampa will be here...but still...leaving my baby girl! But...I get to stay with my big boy...Seth has meet the teacher tomorrow and I have my first parent meeting! What a milestone.
So...I have a little over 24 hours to spend lots of time with Seth...get my laundry done and get organized for a longer stint here. I think I may be bringing my scrapbooking down....maybe I'll have a chance to get caught up on that.
Tomorrow, Andy and I will switch again as he will be home with Seth through the weekend. What a crazy schedule...but I think it is going to work! Andy will be "updating" the blog today and tomorrow....check in for updates! The doctors have not done rounds yet this morning, but we have heard that her liver/kidney numbers have continued to come down....so that's good. And...she ate a great breakfast for daddy this morning

Daddy and Kate have breakfast!



Love to all!

Monday, August 27, 2007

Nannies to the Rescue

Kate continues to show small signs of improvement. She was a little (okay, more than little) grumpy this afternoon...but after a good poop and burp...she was much better (aren't we all?) When Andy and I returned from dinner, she was enjoying some graham crackers and sherbet with her nurse! I tell you...she gets spoiled.

Andy and I had a long talk with the doctor on this evening. He answered a lot of questions we had about the medication she is on. It just freaks me out that she is on so many...but he assures me there are other kids out running around on these medications. The goal..obviously, that after her heart heals that she would get weaned of several of them. He was the 1st person to use the word "dead" in reference to her condition on Tuesday...that put a lot of things in perspective as far as how well she is doing now. Her little heart (after two surgeries and an arrest) has a LOT of healing to do...as well as her other organs...and the goal is to get her off the drip (IV) medication and managed by oral medication...and that is going to take awhile. Her heart is really traumatized right now.

We asked how long was "a while"...and the answer: probably a month! GULP! I really appreciate their caution and wanting to make sure that she is tolerating the medicines and they are doing what they are supposed to and that all her electrolyte levels are staying in safe ranges....but a month! YUCK.

So...we've been working on "plans" on how we are going to manage through another month of this. Andy really needs to get back to work and will plan on starting back the Tuesday after Labor Day. I am most needed here in Indy with Kate..especially since they want her on a "home schedule" to see how she does. What about Seth?...poor Seth....But, no worries...we have a HUGE blessing in that our North Carolina nannies are coming back. Yep, Art and "Reen" are coming to the rescue (again) to stay with Seth at our house for 2 weeks while Andy is at work and I'm here. That gives Seth lots of consistency and somebody to get him to preschool (he starts 2 days a week on the 4th). WOW...WHAT A BLESSING.

The grandparents will be staying with Kate and Seth at times...so it looks like it might work! YEAH...it stinks BIG TIME....knowing it will be a while before we are all together again. But...we keep thinking in a year...it will all be a moot point. So, lots of phone calls and plan making. I'm up for visitors the week after Labor Day...let me know if you have a free day and want to experience "LIFE IN THE PICU!"

Thanks again for all your prayers and concerns...we just keep plugging along! And..thanks in advance to everyone who is going to help us get through the next month! We really appreciate everything....even before it's done....that's how we know we are going to get through it..because we have all of you on our team! GOD BLESS!

Going Down!

We got a good report this morning. All of her numbers relating to her liver and kidneys are coming down...YEAH! It looks as if her liver and kidneys are recovering from the trauma/shock of the arrest and not being on the heart medicine. She is really doing well...eating well....at least for mommy! They have started her on some new oral heart medicine in hopes of getting her off of the IV Milrinone. It is great to see her in such great spirits, resting well and getting good doctor reports. Go Kate Go. It's a good day!

Sunday, August 26, 2007

Got Things Rolling

Kate's doing really well tonight. The big news around room 10 is that the bowel is moving...really moving! I know it's kinda personal..but it's a good thing for her...especially to get all that "stuff" out of her body. She has eaten extremely well this evening...including some bread from the local Italian restaurant Nana and I ordered take-out. Plus she had some orange sherbet for dessert. We can see a big improvement in her and her personality. We see that coming through again in her playing and attitude. She has been chewing on everything...her teeth must really be bothering her. We're still waiting on a big ole smile...but that will come.

Kate enjoying some bread from Bravo's...watch out, she may have garlic breath.

S0 just a waiting game now to see how she responds to the medicine. She's had 2 doses of the Viagra...I'm not sure when they will start turning down the Milrinone...we'll know more tomorrow, I hope.

Andy is back...after his tour of Northern Indiana today. Mom is safely back in Ft. Wayne as we just talked on the phone. Seth is exhausted and safely tucked in bed at Andy's parents.
Not the best picture of Kate..but it is so cute...she HATES her nasal cannula and will make every attempt at getting if off her face. Today...she got it pulled down into her mouth and was using it as a teething device.
My flesh and heart faileth, but God is the strength of my heart and my portion forever. Psalm 73:26 He is our strength....and though Kate's heart may be failing to do it's job effectively...He is bigger...so much bigger than all of this. And in that...we can find some comfort.

A Day At The Spa

We've had a pretty good evening and afternoon with Ms. Kate. They went ahead and started her on Viagra (yep, Viagra) for her heart. That will hopefully (prayerfully) open up her blood vessels and allow better blood flow out of her heart. They will slowly increase that and then slowly decrease the Milrinone..and then we watch to see how she is tolerating it.

Liver and kidney wise..she is doing better...most of her numbers are improving. She has been eating well today so that should help even more. Her bilirubin is up a little today so she is a little yellow in the face, but it is nothing alarming (yet!). She finally had a "code brown" and that is the big news around here...that should also improve her numbers to get those toxins out of her.

She just had a big-time bath...got a new oxygen cannula and leads and fresh clothes and blankies. She even had her nails done...a day at the spa for our little princess.

She is eating well...ate a great lunch of prunes/apples and pumpkin/pear. Yum Yum! She was lovin' it.

Andy is off driving around northern Indiana doing lessons plans, picking up Seth and dropping him off at his parents for a few days. He will be back tonight and mom will leave this evening in order to get ready for their 1st day of school tomorrow. She has been a great help today...it's amazing how many people it can take to bathe her, feed her and get her situated.

We're feeling better about things....hoping and praying that the Viagra will do the trick. The cardiologists will meet tomorrow...but we have already started the process of getting her on that drug. Continued prayers for her liver function to improve and that her heart will begin working more effectively.

We were blessed by visits from Carl and Heather as well as my cousin, Paula and her husband Bill. Thanks for taking the time to see us.

Kate chewing on her peach puffs....3-4 new teeth have popped through this past month! Here she is working hard to chew...chew...chew!

Saturday, August 25, 2007

Please Remain Seated

Ladies and Gentlemen...please remain in your seat until the ride comes to a complete stop! Well..evidently, our ride is far from over.


So, this morning Kate's blood test showed that her liver enzymes were rising and her blood platelet levels were down. She didn't eat well for the night nurse either. So, the intensivist came in around 11 and told me he wanted to run several tests.

1. Send blood and urine cultures to check for infection
2. Call in a gastro-intestinal doctor to do a liver/kidney ultrasound and consult
3. Call the cardiologist to do an echo
4. Start more antibiotics


So...after more phone calls to Andy and mom...the tests began. I was pretty overwhelmed and was not catching everything they said. I never knew there were so many numbers and levels in the liver. The liver ultrasound showed some extra fluid and acute damage..consistent with her arrest on Tuesday. The cardiologist did the echo and his opinion was that she was in right heart failure....basically, the right side of her heart is not working properly and is not pumping the blood in an efficient effective manner. This is causing a build up with the liver. He wanted to check with another cardiologist on Monday and determine if the problem is directly related to the anatomy of her heart.


It was pretty overwhelming....not quite sure what to think of all of it...as when I asked if transplant was ever considered, he said if she doesn't' get better, it may be something to talk about. Andy, bless his heart, did the 2 hour drive to Indy, at top speed, not sure what exactly was going on with Kate. He was at school attempting to do some plans when I called to let him know the news. Nana, once again, jumped in the van and made the drive to rescue her crying daughter.


So...a long afternoon of wait and see and worry and wonder and every other terrible feeling of anxiety with Kate' s health. Melanee came for a "fun visit" with just the girls only, to walk into a room filled with frightened faces. She and my friend Sharyn took me out for dinner and a break...while we were gone Nana and Andy got some good, encouraging news from the night doctor.


She thinks that this is what happened earlier this week. Basically, the Milrinone (heart medicine) had worn off and this caused her heart to not work effectively. This built up enzymes and toxins in her body, causing the arrest. She was back on the Milrinone when she came back in Tuesday and was taken off yesterday...once that wore off, again her heart was ineffective. The good news, is that this is treatable...with Viagra non the less. That medicine would help to relax her blood vessels so that the blood could flow easier. As she grows the pulmonary arteries will grow and allow better flow and effectiveness out of her heart. We will know more once all the cardiologists and surgeon POW WOW on Monday. The gastro doctor said that once the heart works effectively, the liver follows along and gets better. Evidenntly, the liver and heart are really affected by each other.


So...we are feeling better right now...optimistic that we can conquer this and bring Kate home, safely at some point, once all this is resolved. It's a crazy world here in the PICU. A huge thanks to everyone who once again stepped up to the plate to help us in a day of crisis....especially Uncle Doug for keeping Seth.

Friday, August 24, 2007

Back In My Arms Again


Back in my arms...anxiously awaiting some food!

This afternoon, around noon, I was able to hold Kate again. The arterial line came out and now she's mine whenever I wish. She also got the NG tube out of her nose and is no longer on any continuous IV's. She does get occasional IV medicines...but at least it's not constant.

She has been a little cranky this afternoon and evening. Her throat is sore from the tube. Her chest is sore from compressions. Her leg is sore from where they tried to drill into her bone to get fluid in at Lutheran. And...I'm guessing she's a little gassy from eating for the 1st time in 3 days. Plus...she may still be having a little withdrawal...poor thing...I feel so sorry for her...she's breaking my heart.

Speaking of which..she is loving eating again. She has taken 4 bottles today and some yogurt. She is doing really well. YEAH!

We did have a little scare this afternoon as the cardiologist was afraid she might be in atrial flutter...but after an EKG and a careful examination of her rhythm, he concluded she wasn't. I was concerned because she wasn't showing any signs and just finished taking a great bottle. Turns out her rhythm is really hard to read and her "P Waves" don't show up real well. But...so far so good as far as her staying in her sinus rhythm. We're still nervous about her heart rhythm and am praying that it will stabilize and stay consistent.

Dennis and Carol Massey from church surprised me this afternoon with a visit...thanks for sharing some time with us. My college roomie, Mira, took me out again for dinner as Andy is back in the Fort for a few days. Mira has been so faithful and generous to me during our stint(s) in Indy. Andy picked up Seth and took him to Nana and Oompa's to have a slumber party with the cousins! Andy is tying up loose ends we left on Tuesday and going to school to get a couple weeks of lesson plans done. He'll be back on Sunday.

So...overall a good day. More and more tubes came out and it's always great when she is able to start eating again. Prayers that she gets more comfortable and is able to rest peacefully. Love to all!

Getting the 1st taste of some food in several days....so good to see her excited about food!

Dennis and Carol Massey getting their photo shoot with Kate.

Wow....10,000!

It's a pretty slow morning here in room 10. Both Kate and Andy are taking naps and I am just messing around on the computer. We are waiting on Dr. Abraham to give the "ok" to take out the arterial line so we can start feedings. Her foley catheter came out and they stopped one antibiotic and she is down to just a 1/4 liter of oxygen (the smallest they can go)....things are progressing. She is resting peacefully this morning...she definitely needs her rest.

So...I've just been "wasting" time on the computer. Because of the "rush" to get here, I'm not quite as prepared as last time and don't have all my projects with me. I just was looking through old posts and looked down and saw we had passed 10,000 hits on the Blog! WOW. I'm pretty sure it was under 2,000 when we left on this journey almost a month ago.

I am in awe of some of the comments I have received...from dear dear friends to complete strangers. I have a couple stranger's websites who are dealing with heart/genetic issues with their children also that I check out...but never imagined that others would have found us. This world wide web is an amazing thing. Friends of friends sharing in our story....some going through health issues also, or some just "hooked" on our little Kate.

What is awesome is that...although we may be strangers here on earth... so many of you are believing Christians...and someday we'll meet in Heaven and rejoice in the complete healing our our little ones.

So...again I say "thanks" for sharing in our journey, praying for all of us and sending us encouraging comments....they really do mean alot! I love to know who is reading our Blog...I appreciate everyone who takes a couple minutes of their day to pray and think about Kate....And some of you....checkin' on us multiple times a day! She is SO loved...and that makes one mommy so happy and blessed! THANKS FOR LOVING OUR KATE!

Like Brother....Like Sister

I was looking through some old pictures I had on Snapfish and just get a kick out of these. I can definitely see some similiarities between my 2 little cuties!









Can you tell who is who?
Kate is on the left!
Looking back...you can really tell how they have grown!

Thursday, August 23, 2007

Prayers for Pampaw

Can't you see how Seth just adores him?

Just a quick request for our beloved Pampaw! Andy's dad, Larry is battling cancer and today began radiation treatment on his back. He has a lot of damage to his bones and is in pain...but he is quite the trooper and you would never know it! We would really appreciate some extra prayers sent up on his behalf....We love you Pampaw!

Just a quick Hug


Today....I got a short chance to love on Kate in my arms. She still has an arterial line going into her leg...so "they" really don't want her being held since it is so fragile and dangerous if it were to come out...But...today Kate's sheets really needed changing and somebody had to hold Kate...and mommy was the lucky one. It may have only been for a minute or two...but it felt great!


Kate has been doing well off the vent...she had to have one breathing treatment...but that cleared up her lungs. Tonight, she seems a little restless. She may be in pain from the chest compressions and tonight, Dr. Rupple said it takes a couple days for somebody who has arrested to get back to normal. Our goal is that tonight she can get some really good rest.


From what we've heard...the "plan" for tomorrow is to start feeding her again, get her arterial line out (so I can snuggle snuggle) and wean her off a heart medicine and stop the antibiotics provided no yucky cultures grow from her blood test on Tuesday. Sounds like quite the busy day.


Nana headed back to the Fort tonight. We really appreciate her being her with us and Kate. Seth is having a grand time with grandparents. Guess he found Andy's old trucks from his childhood in the attic and washed them in the bathtub. He is lovin' life at Grandma and Pampaw's. Lou and Shirlie stopped by today for a visit and to love on Kate!


Christie and Alicia giving Kate a bath!

Christie has been an awesome nurse for Kate for both of our visits. In fact, Christie was her nurse on Tuesday and was the one who took her off my lap! She just loves and loves on Kate and takes awesome care of her. Alicia (in blue) is "in training" but you would never know it from her expertise....she has also taken great care of Kate. We love Christie and Alicia!

In A China Shop

I've had a little lesson in the fragility of life. I guess I've always known that life was fragile and that not one of us has any guarantee of a "long life." But...for some reason, I just always had that ever popular theory: "It will never happen to me." It sounds so cliche...but it is so true. I have been fortunate in my life that I have not really been surrounded by too much death. My 4 grandparents had passed by the time I was 10...so I barely remember them. Since then, I can really only think of a 4-5 significant people in my life who have passed away.

My experience on Tuesday with Kate has yanked me back to reality, and now after Kate's birth, health issues and then her "episode" on Tuesday...death just seems real to me. I don't want to live in a constant fear of Kate's life. I don't want that fear hanging over me every day of my life. I want to experience joy with Kate...not overriding worry.

But, right now...somehow, I have to really learn how to deal with this fear. For me...especially right now after living right in the midst of ICU life, my feelings seem to override reality. I know down in my heart the truths...but golly gee...the emotions and fears take over. I know that time heals...and the longer Kate stays healthy, the more distant those fears will become...but right now....IT HURTS. I cling to the fact that I know and have confidence that a glorious seat in heaven is awaiting us all....but right now...I want Seth and Kate in MY life. I know my kids are just on loan to me from their Eternal Father...but right now....I'm selfish. I know in my heart that Seth's life is just as fragile as Kate's....but I never lived with that fear on a daily basis the 1st 2 years of his life. Maybe I was naive...but I didn't...and right now...I'm scared I'm going to lose her...maybe not right now...but it just seems more real!

We will probably never have any definite answers as to how Kate's abnormal anatomy of her heart and arrhythmia issues will affect her life. We do know what to look for....we know some warning signs....but Kate is going to be a mystery....a life filled with "wait and see." And right now, that scares me.

Today was bit of a crying day for me. Nurse Jessica told me that was good...every mommy needs one of those. Yes, I am sad...Yes, I am scared...Yes, I am worried...Yes, I am anxious. Crying helps get some of those emotions out so that I can go on and deal with the reality....right now I'm not so sure how...but with God's great grace...I know I will. Do I really have any other choice?

So, now I must cling to God. I must give up control and totally put it in His hands. That is so hard for me. I can barely give up control of how to load a dishwasher, let alone control of my daughter's life. That right now, is what I seek from God. He was real to me in His timing on Tuesday...now I guess I have some new lessons to learn on control. I'm scared....scared to death...but somehow...I know those feelings will fade.

Thanks dear Blog readers for listening to me ramble...I guess it was good to write out some of my feelings. And, any of you who have any advice for me...bring it on.

3rd Time's a Charm

Kate giving a little bit of an evil eye...she's a little cautious.


Kate is once again off the vent, for the 3rd time these 2 hospital stays. She did really well and is doing great so far...after about 15 minutes. We had a little scare this morning, as the 1st time they turned down her vent...her sats dropped and she was breathing hard...a few minutes later they tried again and she was doing well. So...all looks good...she is playing with her toys and suckin' on that pacifier. We're off to get some lunch before they close...more info soon!
Kate and Corry, the night respiratory therapist...hopefully, Kate's last picture with a tube and an RT! Corry takes great care of Kate during the night!

Kate soon after extubation with Roger....Roger was the RT who continuously gave Kate compressions on Tuesday! What a hero!

Wednesday, August 22, 2007

The Perfect Storm

Kate continues to do well...she is awake...she turned the pages of a book...she studies pictures in a book....She tries to catch the fish in her fish aquarium...She really looks good. SHE IS JUST SO DARN GONE CUTE...but it almost kills mommy and Nana when she start crying....that's all it takes to set us off too!

The cardiologist, the rhythm expert, spent quite a bit of time with Kate today. He gave her some special medicine that slowed her heart rate down to the 80's for just a few seconds so that he could really study her rhythm. After looking at it for a while...and a 45 minute conversation with his mentor/colleague in Cincinnati...he determined that she is in Sinus Rhythm (sinus being a regular rhythm). He does think she has a short delay between when the atrium fires and then the ventricle contracts, which may or may not cause problems or get worse. So...at this time he doesn't see the need to do that heart cath. They will watch her over the next few days....there is a small possibility that she may need an internal pacemaker installed down the road...but for the immediate, that doesn't appear necessary. She is just going to be the kinda kid that when she doesn't eat or appears sick, we immediately take her in to be seen and not "wait it out!" Her heart will never be "normal" and she will probably always have some sort of arrhythmia issues...our hope and prayer is that she is able to tolerate them and show definite signs if she can't! I tell you one thing...we are all getting our CPR accreditation up to date!

So...there still seems to be a "mystery" as to exactly why her heart stopped yesterday. Different doctors seem to have different views. So, in my medical expertise, I am labeling it as the "perfect storm" A combination of being dehydrated, high potassium levels, her arrhythmia problems, her heart being "sick", the trauma of being in the ER and on the ambulance and helicopter...it all came together and WHAM....But, in God's perfect timing HE waited until the PERFECT TIME, to allow it to happen. God is watching over us...it is truer to me now than I have ever experienced before in my life. There were just too many inopportune times for her to arrest...and SHE DIDN'T.

We were blessed by a couple visitors today! Pastor Chuck from church came and spent several hours with us! Thank you....your presence and prayer were a great comfort to us. And...my cousin Martha, along with her husband, Larry and son, Peter, came for a visit from Southern Indiana (they were in town for an appointment...but really appreciate taking the time to find us and spend time with us!) The day really seem to fly by....visitors really help with that!

Larry and Martha lovin' on Kate


Pastor Chuck and Kate

The plan for tonight is to try and wean her off the vent and prayerfully get her off the vent in the morning. Then we can get back to eating, gaining strength and getting her home again....but not too soon! I think I'll be a little cautious this time! All in all a pretty good day for Miss Kate...and for Andy, his day was complete because he had a Charleston Chew....a favorite of his from his childhood....if we all could find such simple pleasure in life!

Get Some Rhythm

Kate had a great night...she has been stable and seems pretty comfortable. She is awaking appropriately...and easily goes back to sleep. All the doctors are really pleased with how good she looks and how well she is doing.

The plan now is to get a cardiology plan. The cardiology rhythm expert is going to look at her EKG and possibly do a heart cath where he can look in her heart at all the rhythms. If he does that, they will leave her intubated....if he chooses not to do one...they will work at getting her off the tube in the next 24 hours. They think she might have a stage1 heart block...basically, there is a delay between the atrium signal and ventricle signal. Who knew the heart was so electrically based! I am completely in awe of God and his creation with the human body....there are so many minerals and electrolytes that have to be in complete harmony with one another! AMAZING...and amazing how fast things can go "BAD" when all those aren't in line!

The chaplain came in and talked with us today...she is an awesome lady! She did tell us yesterday was her 2nd scariest moment with a family in 9 years! WOW! Kate is amazingly strong and has pulled through, amidst some terrible odds! GO KATE GO!

So...today we wait and see. Kate is still on no pain medicine...so our goal is to keep her comfy and calm...even with a giant tube down her throat. She is enjoying some Baby Einstein and her birds mobile! The staff is awesome around here...I asked them for the bird mobile...in a minute, they were on the hunt! "When Kate wants birds...she gets birds!" Andy asked for a BMW convertible...they weren't on that one so fast! Keep those prayers coming!
Love to all

Tuesday, August 21, 2007

All is Calm....

Kate has improved greatly from where she was...but she obviously has a long way to go! She has had a pretty stable evening and all of her "numbers" look good. It appears as all of her levels are getting within the correct range. They say that for as rough of an afternoon as she had, she is doing well. Now...just to figure out what happened.

She is on the vent, but is not on any sort of pain medicine. She has been waking up occasionally and appears responsive. We have had the concern that during her 20 minutes, that oxygen didn't get to her brain...there is always that neurological concern when the heart stops. So far...Kate has shown NO signs! PRAISE GOD! She turns her head to voices, loves sucking on her green Popsicle (a sponge they use to clean out her mouth) and just appears alert!

Kate has made a huge impact on the staff here...today several of the nurses were crying....there's been a lot of crying today...but MORNING BY MORNING NEW MERCIES I SEE! We're hoping to get a good nights sleep..if there is such a thing.

Seth is safely back in Portland, ready to enjoy the Tractor Engine Show. Nana is with us in Indy. Please continue to lift little Kate up in your prayers...Prayers for strength and prayers for wisdom and discernment for the doctors tomorrow as we put together the puzzle.
Love to all....

So We've Had a Bad Day

Most importantly, Kate is stable right now...but she has had quite the day. We are back in Indy in the PICU. She is back on the vent and back on lots of medicine.

Last night and through this morning, Kate has been slowly eating less and throwing up/gagging more and more often. Thank God Andy was home and we both just knew things weren't good and decided to fore go the noon appointment at our local pediatrician and head to Lutheran ER to get her transported by ambulance to Indy. This was after a conversation with the heart center in Indy.

We arrived at the ER around 11:30 and they tried with all their might to get some lines in to get some fluid to her. She was dehydrated, which is what I thought was her issue. I think Lutheran was a little overwhelmed as there were 7-8 nurses/doctors/EMT working on her. Her blood tests showed dehydration, but her heart rhythms seemed okay.

At some point during the chaos, the decision was made to go ahead and fly her to Indy....thanks to Andy and a nurse's persistence. I felt okay when we left because all tests looked as if she was just dehydrated..but a trip to Indy just to make sure with the doctors who knew her seemed wise. Her color was poor and her breathing was labored.

So...Kate and I were off by ambulance to the FW airport to catch the Samaritan to fly to Indy. That was another mess because the Lutheran helicopter was grounded due to the weather..but Parkview's had the instrumentation to fly in bad weather. Thankfully, they went ahead and let me fly with her, as she was resting peacefully on my lap. After a 35 minute ride, we arrived at St. Vincent...luckily the weather was good here and we could land on their helicopter pad. After a 2 minute ride in an ambulance...we arrived in the PICU and they took her off my lap and sent me away.

That's when....Kate's heart stopped for about 20 minutes. She received CPR while they tried to get a central line in her. Evidently, the two lines they put in at Lutheran were not working. But they did get her heart started again, she is intubated, on several heart medications and right now seems to be resting.

As far as what happened...we are still not sure. It may be a rhythm problem...could be electrolytes...could be a combination of things. Right now, the plan is to let her rest and reevaluate her tomorrow and hopefully make some conclusions. All the best doctors and nurses are taking care of her. We just keep telling ourselves: " We got her here...now let them do their job."

It has been a chaotic afternoon....getting Seth situated (Thank You Grandma and Pampaw)...getting all the other responsibilities covered...trying to pack in a moment's notice...THIS STINKS. Thanks to everyone...Nana, Oompa, Gayle, Grandma, Pampa....who stepped up to the plate today.

My life has been forever changed since the nurse came and told me Kate's heart was not beating...I wish NO MOM would ever have to hear those words....it was an eternity before she came back to tell me Dr. Chatan got a line in and her pressures were good! THANK YOU JESUS! No family was here with me at the time....a feeling of void that could not be filled...but at the same time the social worker, Jennifer and Chaplain, Julie, stayed with me until Andy arrived a few hours later.

So....only God knows where we are going from here....but I'm guessing at least another couple weeks here...especially since I won't be in any hurry to get her home again. Poor little girl....just needs a break in life....your prayers are desperately needed....for us all!

Exhaustion

Exhaustion has pretty much set in around here. Honestly, it has been a pretty rough couple days with Kate home...and that's even with Andy home too! Bless his heart...he has taken Monday and Tuesday off of work to help...in fact he drove into school at 3 am to do lesson plans.

We're hoping Kate is just having some withdrawal issues...the biggest being that she isn't eating much. I am paranoid as to how much she needs/should be eating and definitely don't want her to get dehydrated. We are taking her into her pediatrician tomorrow to get his opinion. She has been throwing up after she drinks an ounce or two of milk...we don't know if she has an intolerance for the whole milk or if it is withdrawal side-effects....all I know it is stressing me out!

So...prayers are needed around here...especially for little Kate who is obviously still in pain and/or withdrawal. It is so hard for me to see her in such discomfort.. Also...mommy could use some prayers too...prayers for patience and wisdom, especially in the midst of lack of sleep. It will get better...but right now, it's hard for me to "see the light."

I'm off to bed...at least for a couple hours I hope!

Sunday, August 19, 2007

Back At It

We're back at normal life in full swing....grocery shopping, laundry, making supper, paying bills...all that fun stuff I thought I so desperately missed. It is just good to be home with the 4 of us...and since it was a yucky rainy day...we didn't feel guilty about just staying home and being together!

Kate is doing fine...I guess. It is obvious she is still pretty drugged, tired and GRUMPY. She has been eating decently but it takes her a while. We're still trying to figure out her milk thing....at times she'll only take it from a sippy cup...but occasionally she wants a bottle.

Last night, she slept from 9-2, 3-5 and 6-8! I guess that's not too bad for the 1st night home. I guess I just have to learn to go to bed when she does, but being a night owl, that usually doesn't work for me...but I just PRAY PRAY PRAY she will start sleeping through the night within a week...I have no idea if that is unrealistic, but who am I to limit God?

She has been taking a lot of naps throughout the day...waking for eating, some playing and when I have to wake her for her medicine. She isn't too smiley yet and is pretty fussy, if you can't read what exactly she is wanting at that moment. She is still weak, but I know that time heals and she will be back to her old self soon! I am just so grateful we could bring her home...even though she still has some recovering to do. We'll make it!

Saturday, August 18, 2007

Home Sweet Home...

Yes it is...both kids are fast asleep in their beds and half the bags are unpacked...it is so good to be home...and to a VERY CLEAN ONE AT THAT. I can't thank my dust fairies enough....HUGE THANK YOU! Kate has had a "real" bath and has played a little...most of all she has slept! She is really enjoying the quiet...sleep my little princess....sleep!

It is weird that 12 hours ago she was in an ICU and now she is just sleeping away with no monitors and no nurse standing by! I have a feeling I will be up several times tonight feeding her, so hopefully my "fears" will be relieved by frequent checks!

Just wanted to let all you faithful BLOG readers know...life is real again and our internet is slow....don't expect multiple entries a day! I will definitely update daily the next few weeks and keep everyone "in touch" with Kate's progress and probably my insanity. Most likely...the entries will be late at night...once my charges have hit the sack! I am so humbled by all of you who are so faithful to my ramblings...thanks for caring.

Well..I am off to MY OWN SHOWER! WOO HOO!!!!!! Life is Good..and so is GOD!

Praise God From Whom All Blessings Flow

25 Blessings for 25 Days in the PICU
in no particular order
1. Kate is coming home with a fixed heart!

2. We have had sleeping arrangements every night we've been here...and have only paid once...thanks to Nana and Oompa's Camper and the Sleep Rooms.

3. We have been covered in prayer and support from family and friends everyday! With over 4,000 hits on our blogsite: Kate is SO loved!

4. The laptop computer from Canterbury....not only for being able to update the BLOG, but for distraction and entertainment also....let me add highspeed internet...wow, we've got to get this when we get home!

5. Meal Cards...the cafeteria may not be the best food...but when it's free, you can't complain.

6. The camper: it's been a wonderful place to eat, keep our clothes, sleep and catch an afternoon nap! Thanks so much!

7. Our parents and my brother and family: they have been incredible support...by being with us at the hospital and keeping Seth. We KNOW without a doubt Seth has been loved on while we have had to give our time to Kate.

8. Supplemental Insurance....thank you Indiana Dept. of Health & AFLAC!

9. We were covered in prayer by our church family and had pastoral care and company during Kate's surgeries.

10. Todd and Melanee Findley: they so graciously covered the pool duties for us.

11. Visitors: so many of you made special trips to see us, chat with us, pray with us and bring us goodies. Thank you for taking your time to spend time with us!

12. All of Kate's issues after surgery were typical...a few setbacks...but NO SUPRISES!
13. Gayle Givens: she came to stay with me for 3 days when Andy went back to work.

14. Andy's work: they are so supportive, and we didn't have to lose any income while spending our time with Kate.

15. The nurses and doctors: they have been so kind to us and to great to Kate. We have received awesome care at St. Vincent.

16. They found Kate's residual VSD while we were here...NOT after we have been home and totally recovered.
17. The Gunckels, our neighbors: they have taken such great care of our kitty and gotten our mail every day.

18. Seth has been able to visit and we've had some quality time with him while here in Indy: at the park, the museum, swimming and in the camper!

19. The washing machine on the 3rd floor! Kate has had too many "Code Browns"...so glad we haven't had to find a laundromat.

20. Dr. Abraham: so thankful that he has dedicated his life to saving little hearts...and has the skill to operate on them.

21. That we have only had to go to Indy for the surgery...a few years back, we may have had to go to California for her surgery. Two hours isn't so bad, when you think of the alternatives.
22. The right specialists have been "on call" at the right times: the rhythm expert when she was having rhythm problems... the catherization expert when she needed an "emergency" cath...all her doctors when she had to get re-intubated.

23. We were able to stay in the PICU until dismissed...we know the staff and they know us...plus we got really good care right until the end.

24. No nasty infection grew from her cultures!

25. The gifts, $$, meals, acts of service and gift cards we have received which have helped us in SO many ways....so many of you are too generous!

We're Outta Here!

All lines are pulled...all monitors are off...all bags are packed....we are on the road at 2:00 p.m. on Aug. 18! God is good...our baby girl's heart is fixed! See you in the Fort!

Slumber Party


Kate had a slumber party with the night girls....fortunately, for the patients sake, Kate is the only one slumbering! Carly, Melissa, Tara and April have all taken awesome care of our little Kate on those weekend nights (and other nights too)! What dedication to give up your Friday and Saturday nights to take care of our little sick ones! Thanks girls! Don't party too much tonight...and no pillow fights!

Friday, August 17, 2007

Let's Blow This Popsicle Stand



So...there's this rumor around the PICU that we are headed home tomorrow! SHHHH!!! We can't let Kate know....she has a tendency to change our plans when she gets wind of it....it's a very hush hush topic in Room 8. She's staying in the PICU until dismissal, even though there are rooms now....the staff as takin' quite the liking to this little girl....as much as we can't wait to get home...we'll miss all of the staff.

The staff have been "training" me in her medications: unfortunately she is coming home on 9 different medicines...YUCK.

2 for her heart (keep her blood pressure down & for her rhythm problems)
2 for her drug withdrawal (those will be done in a week)
2 diuretics (to keep the fluid off of her body/heart)
1 for her reflux
and Iron and Potassium

They PROMISE me all these won't be forever...and with each monthly visit to the cardiologist he should reduce or eliminate different meds! YEAH! So...I've had my training and they have rearranged the schedule so it is much more home friendly. Thank goodness, cause I don't' want to be up at 4 am just to give her medicine. And...Gayle and I had to go on a nice drive to find this special pharmacy that would dispense her Methadone and Ativan for her drug withdrawal. Evidently these are very "controlled" drugs and only certain pharmacies carry them.


And, this afternoon, she had a hearing examination. This is a routine check for kids with 22q chromosomal deletion, as hearing loss can occur. The good news: all her hearing is completely in normal range...not that we had ANY reason to think that it wasn't. PRAISE GOD! However, the test was absolutely ridiculous. First they had to stick several monitoring devices in her ears to make sure her ear drums were moving and sounds were bouncing back. Then we went into this little dark, sound proof scary room. Our trusty nurse Jessica was with us. Her job was to keep Kate distracted and looking forward....WITHOUT making any noise! YEAH RIGHT! Kate was on my lap and the audiologist would make certain sounds at different decibels and frequencies and watch for Kate to turn her head toward the sound. Then....if she did...she was "REWARDED" by this black box that lit up and a very scary Chuckie like stuffed animal that banged a drum. It was creepy for me and Jessica...I can't imagine Kate. This went on for over a half hour! Kate did well for the1st ten minutes...but after that...she was SO DONE with it! But....she passed, and that is all that matters.

She is drinking whole milk now...no more "formulas." YEAH! She has been a little cranky/uncomfortable today...but it has been a busy day. She just needs a good night sleep in her OWN room! Tomorrow...my sweet girl....tomorrow.

My buddy Jack (Gayle's son) stopped by tonight...I gave him a hard time since I didn't have his picture with Kate...so he came back for his photo shoot!

It's been a crazy day for Gayle and me (as well as Kate)...we didn't get lunch until 4:30. CRAZY! So...one more night in Sleep Room B! Is it really coming to an end? Can it be so?

Thursday, August 16, 2007

Dinner Guests


Sharyn feeding Kate...it's been awhile since she's fed a baby! Great Job, Sharyn...those mommy skills never go away!

Kate had company tonight for her dinner. My high school bud, Sharyn, came over for a visit with her son and daughter. Kate was having her dinner in a high chair. She was very interested in eating and ate a wonderful dinner of: carrots, apple/blueberries, banana puffs and grape juice! We almost couldn't get the food in fast enough! Kate is doing great eating solids.

4 year old Ava helping give Kate her sippy....somebody was a little impatient!



Now...as far as the bottle, she is being a little stubborn. She hasn't taken a whole bunch for me today and obviously we don't want her to get dehydrated. Well...tonight, when she refused the bottle of Pediasure, we offered her just whole milk in a bottle. Again...refusal! But...the stubborn little princess did take the whole milk from a sippy cup! Is she so done with that bottle already? I have a feeling I am going to lose a lot of hair over the next month trying to get this girl to eat. Her appetite is probably smaller from the surgery, she isn't feeling well from the drugs and she is just still recovering. I'll be interested to see what happens tonight for Nicole, the night nurse...Kate has eaten really well for her the last two nights.

Our friend, Sarah, relaxing Kate with her calming voice and touch. Sarah is Dr. Abraham's nurse practioner....she has been a great encouragment to us this past week (she was on vacation the 1st two weeks we were here!)

No strings attached!

Kate was officially not hooked up to anything today for about an hour. We got the okay to go "out of room 8" and take a wagon ride. She seemed to enjoy the ride...we took a "walk around the block...inside the hospital" We went down to the main hospital and watched the fountains.

We also got the okay for give her any food she wants...so I picked up some of her favorite food, snacks and a sippy cup. We also have a high chair for her next feeding...things are looking good.

Gayle's daughter-in-law, Amy (Jack's wife) spent a few hours with us. We all got lunch and were able to sit outside and enjoy some fresh air. Thanks for the nice visit!





Amy lovin' on Kate....shake shake shake your rattle Kate!