Hi all...not much to report today...
I met with Seth's preschool teacher today for my first "parent teacher conference" It was all of about 10 minutes...but all is well! I was so glad to hear that he was getting used to school enviornment and participating more and more. He still is on the shy side and needs a lot of encouragement to talk in class...but at least he's not the trouble maker! It was neat to see the progress he has made in just 4 short months with his cutting and coloring. Yeah Seth...I'm so proud of you!
Andy has got some major sinus/cold/flu thing going on! I knew he wasn't feeling well last night...but today when Seth and I got home and he was tucked under the sheets in bed after work...I knew he was in bad shape! Poor thing...he just sounds awful. We're hoping and prayin' big time for this big time storm tonight so he can get a good day's rest...but that's not a fun way to spend a snow day!
Other than that...not much else today...just a another day attempting to adjust to our new normal! but hey...I actually cooked dinner from scratch tonight for the 1st time in months! And knocked out a few more thank yous....they are on their way to all of you who have blessed us so much over the past few weeks! And I can't believe the cards are still coming in the mail...you all are AWESOME!
Thursday, January 31, 2008
Hi all...not much to report today...
Posted by Krista Layman at 11:36 PM
Wednesday, January 30, 2008
Seth is growing up TOO fast! I know every mom says this at some point...but just in the past few weeks I've noticed some major (at least in my eyes) milestones! I keep asking him: when did you learn to do that?
1. He appears in my room completely dressed in the mornings...complete with all the undergarments (including a undershirt)...and amazingly matches over half of the time!
2. He can get his own juice...with just the help of a chair...he can get the juice, get down his sippy cup and fill it...without spilling!
3. He is completely capable of sorting laundry, loading the machine and putting in the detergent and fabric softener! He only needs help setting the right temps, etc.
4. Tonight...we were doing a coloring/activity book. He was able to do all the matching, dot-to-dot, mazes...he was actually doing "academic" work! It brought my parenting to a whole new level. We're working hard on holding the crayon the right way...but he is making strides! What fun to see him really thinking!
I know from now on...these milestones will just keep coming and coming and he will become more and more independent! It is what we want from our kids...but really...so soon? I did find comfort today in this conversation we had while walking up the stairs.
Seth: Are you going to stay here forever?
Mommy: Yep...I'm not going anywhere?
Seth: Will I be here forever?
Mommy: Well...probably when you're 18 you'll leave and go away to college and get your own house!
Seth: No thank you...I"ll just stay here with you!
Andy (from across the room) See if he says that when he is 16?
It's those conversations...with a 3 year old...that just warm your heart! Love you Seth!
Posted by Krista Layman at 8:44 PM
Tuesday, January 29, 2008
Well...today marked 2 weeks since Kate's death. In most ways...it's been a very very long 2 weeks. It's the 1st time I have actually been home (and not in the hospital) for 2 weeks straight since July...which also means it's the 1st time I've spent 2 weeks straight with Seth. In that way...I'm so glad to be home...but at the same time, it's hard being home...without Kate.
It's so hard to put into words how I'm feeling lately. Most of all I am just missing my little girl...missing the routine that went with her life...missing holding her...even missing the late night bonding/feeding sessions. We miss her when we give Seth a bath...thinking she should be there too! The playroom seems so empty without her toys. It's not right making dinner...and not having to get her food ready too! We just plain miss her!
And occasionally, I have feelings of loneliness. So much of Kate's life was spent in the hospital, at doctors or even with therapists...and often...people were here at the house helping with Seth. We've been surrounded by so many loving nurses and therapists and doctors for so long..they almost seem part of your life.. It just feels really weird to be home alone with just Seth...even weirder when I drop him off at school and have 2 1/2 hours completely to myself. Don't get me wrong...I absolutely love being home with Seth...but it's just different right now...it just doesn't feel right.
It may seem strange...but one of the hardest things for me now is to be in a store and see the "baby aisle" I almost find myself wanting to go down it...but then reality hits that I don't need to....and that makes me sad.
We watched some home videos tonight of Kate around Easter time last year...she is just so dong-gong cute. She looked so good...and had so much energy. The hardest part was realizing how sick she has really been since July. I think we fooled ourselves sometimes in thinking that she really looked good and was doing better...when in reality...she was a really sick little girl. We haven't had "our Kate" since before her surgery in July. She tried hard...she was a fighter...she smiled through it all...but she didn't feel good, and looking back now...we can surely see that.
There's a part of me that still feels that maybe Kate is in the hospital somewhere...and someday she'll be home. I told Andy that it's hard to think she is gone forever...he said: not forever...just a very long time. Thank you Jesus for that hope!
So...new feelings that we have to adjust to. We know that time heals...and that it really hasn't been that long. We are just so grateful to have such a wonderful support system and each other and Seth and God to help us through each day. We're making it...it's just hard. ...and I think it's just harder right now as the dust has settled and life has moved on (which it has too...we have no choice in that matter...our princess would want it no other way!)
Love to all..thanks for listening!
And on a lighter note...what about this Indiana weather? Tonight the weather man said it was going to feel like a 60 degree change in temperature from today to tomorrow? That's crazy! Today it's like spring...tomorrow ice and snow and below zero windchill!
Posted by Krista Layman at 11:23 PM
Monday, January 28, 2008
Yesterday...we headed out to one of our county parks for a little hiking and sledding through the woods. It was a beautiful day...not too cold and the snow was gorgeous. I found it funny though...there were signs posted everywhere: trails closed when snow covered! HMMM? Kinda goes against the purpose of having a county park doesn't it? Others must have agreed as the trails were heavily marked by skis, footprints and sled marks. Here's a few pics from the day...the sledding was okay...the hill wasn't huge and the snow wasn't really deep enough...but fun enough for a 3 year old!
Posted by Krista Layman at 8:57 PM
Sunday, January 27, 2008
So...in the past couple days...I've stumbled across some of my friends who are also in the blogging business that I didn't know about (LeeAnne!) ...and some who have just started on this addictive journey. I'm quite excited..as now I have lots more people to check up on! I've added you to my links so I'm sure to check in often (if you don't want a link...just let me know!) In case any others of you are out there with a blog to share...email me a link and let me at it! Or...better yet...why don't you start one of your own! Cause we all know...we all have the cutest kids in the universe and what better way to share their stories and antics! Come on...give it a try!
Posted by Krista Layman at 1:20 AM
Saturday, January 26, 2008
Not much to report today. The boys went to Grandmas for the day in an attempt to get some firewood, check on Kate's grave site and visit with Grandma for a while! They had a great time...but unfortunately, the chainsaw didn't cooperate...so not too productive on the firewood end.
I did some more cleaning...tackled the family room today which included the movie cabinet! How in the world did we end up with so many movies? It's insane...but I know I couldn't throw out any of Seth's...because as soon as I do...that's the one he would want. He has an uncanny memory for his movie stash.
I did get away and have coffee with my good friend Melanee and we wandered the isles of Target for a couple hours...it was good getaway.
I had to run to my parents and a quick errand tonight.... and Andy said Seth was super cute after bath and during his before-bed-movie. He came right downstairs and picked out a Baby Einstein movie because that was Kate's favorite...and he proceeded to watch it! I guess he and Andy had a pretty indepth discussion and Seth told him all the things he remembered about Kate...including him acting out her laying on the floor and kicking her legs! He is such a blessing to us right now...Thank you God for Seth!
We're excited about getting back to church tomorrow. It's been so long since we've been...some good worship and great teaching will be great medicine too!
Posted by Krista Layman at 11:40 PM
Friday, January 25, 2008
Enjoying our $15 worth of snowcones---Yikes...that place is a money trap! And wouldn't you know it...both Lucas and Seth decided they didn't like them....placed them on the ground, proceeded to knock them over...at which point my feet were sitting in a snowcone syrup ($10 worth) all night! But between the peanuts, popcorn and cotton candy...we all got a little fix of circus snacks....isn't that why you go to the circus? Fortunately...we managed to avoid the glow-in-the-dark mania...much to Lucas' sadness...but really...$12 for a light-up sword! Give me a break!
Posted by Krista Layman at 10:51 PM
Thursday, January 24, 2008
Andy loves Youtube...ever since we got DSL...he loves listening to all kinds of songs and watching videos. Usually they are from the 80's or some one hit wonder song! However, a few weeks ago...when he was up in Ann Arbor...I could hear him listening to a particular song. I never really listened to the lyrics...cause after the 1st few lines...I didn't want to hear it. In fact...one night, just a few nights before Kate's passing...I even asked him to turn it off.
Well...today, on the way to pick up Seth from preschool..."that song" was on the radio and I found myself listening to it and being extremely touched. "That song" is Held by Natalie Grant.
I have had an amazing feeling this past week. That feeling that I am being "held" by my Savior and God. That feeling is not easily expressed or written in a "blog"...it is just there. Sometimes I get it from a simple rose or an act of kindness from a funeral home.... other times it's just there. I just know that God is still with me. I just know that He hasn't left me...and He is still working out all things for good. Yeah...this is extremely unfair...Andy and I didn't deserve this...but we are being held...and that brings us so much comfort in the midst of our storm.
Not only are we held by our Savior in those "unexplainable ways"...we are also being "held" by his servants here on Earth. Andy and I have felt nothing but love from so many: family and friends, strangers and co-workers. What is it that makes us feel so "held?"
---the stacks of cards we receive in the mail everyday
---the flowers that adorn our house
---the fridge and freezer packed full of food
---the random phone calls...just to say "hi!" and "how are you?"
---the generous donations in Kate's memory
---the encouraging comments on the blog
---the many who came to give us hugs and celebrate Kate's life at her viewing/funeral
---the gifts that come in the mail from complete strangers who have been touched by Kate's life.
---the network of heart families who are spreading Kate's story through "blogworld"
Many times people would say to us: "I don't know how you do it?" Our thoughts went immediately to the families going through "this" who don't know the Lord and don't have His cloud of witnesses here on Earth watching over them. Those are the ones for whom my heart aches. It continues to be our prayer that through Kate's short life and story...maybe perhaps somebody "out there" may come to know or even just "reknow" the Lord. But for us...we have the hope of tomorrow...and that is how we get through it...and for that we are forever grateful. Thank you to each and everyone of you who has "held" us this past week...and will continue to hold us...We are blessed.
Posted by Krista Layman at 10:53 PM
Wednesday, January 23, 2008
Posted by Krista Layman at 1:40 PM
Tuesday, January 22, 2008
Posted by Krista Layman at 9:00 PM
Our pastor gave an awesome message at Kate's funeral. I don't think I could have asked for more reassuring and comforting words. I am by no means going to be able to give it justice...but I did want to share a few things he said.
He began by talking about how even in the most beautiful garden...occasionally a rose bud never has the chance to fully open. There is no reason...but it happens....just as Kate's life never had the chance to fully bloom. He went on to assure us though...that in God's magnificent garden...those flowers bloom like nothing else...in God's garden...Kate is in full bloom! I just love that analogy.
We had plans for Pastor Chuck to come to Ann Arbor on Tuesday afternoon and dedicate Kate. Well...that didn't happen. Instead...Tuesday evening Pastor came to our house, read to us from scriptures, prayed a prayer of dedication and gave us a beautiful red rose bud....a dedication rose. I snipped the end and placed it in a vase. When I got home from the funeral on Saturday....that rose bud had turned into the MOST BEAUTIFUL, PERFECT rose I have ever seen! It's true...I can never remember seeing such a perfect rose. There was another rose in the vase that we received from the florist...and it by no means even began to compare in beauty to Kate's dedication rose. Isn't it amazing...God is so into the small stuff...those everyday reassurances we need in the midst of grief and despair. Just had to share that...cause I think it's really really cool!
Pastor Chuck went on to tell us 3 things he had learned from Kate...from a speechless 18 month old with a bad heart.
1. Enjoy the simple things! Kate loved that simple, white washcloth...and even covered in a bed of new Christmas toys...Kate found pure joy in that washcloth.
2. Smile..even through the bad stuff! Kate...even amidst pokes and prods...almost always had a smile on her face. She loved smiling...and wasn't afraid to show it.
3. God can use anybody! Lives have been touched and encouraged because of precious, tiny little Kate. If God can do so much through her...what can he do with me?
His words were much more perfect and elaborate...but I definitely wanted to share some of those things with you! It is amazing what an impact that little girl has had on so many people. I am forever grateful to those of you who have shared that impact with us...it gives us such joy to know her life....as short as it was...was so worthwhile and full of meaning.
Last night was a hard night for me...nights are the worst. As you can tell from the time of this posting...I am again not wanting to be alone with my thoughts in a quiet room. Amazingly though, like it is everyday ...the sun came up (and a 3 year old toddled in) and ushered in a new morning...and as the song goes...new mercies I see! The 3 of us went to a movie today (Veggietales...Pirates) and we realized that it was the 1st time that Andy and I were both able to take Seth to a movie theatre together. What joy that brought! We have been blessed by a parade of meals and food this week...and it has been awesome as I really don't feel as if I have it together enough to actually cook a meal....plus I think I may have forgotten how. I did tackle a room tonight...after Seth was in bed. Tonight it was the den...including filing 5 months of bills and paperwork...yuck! But in some ways....it felt good to toss all of her medical papers/contracts/bills/reports....it feels good to get rid of the stuff that reminds me that she was sick. The hard moment of the day...putting strollers, a high chair and an exer-saucer up in the attic....but again...hope...hope that someday we can get them down and use them again. What would we do without hope?
And the Seth story of the day: Tonight after he was in bed..he just kept yelling and yelling for me. I gave in and went up and he wanted me to listen to a song. It was "This Ole Man"...and he couldn't wait for it to get to #7. When the words came that "he played knick-knack up to heaven"...Seth just lit up with a smile! I guess heaven has a whole new meaning to him now!
I guess I'm a little long-winded tonight. Thanks for listening. I guess I'll head upstairs and pray for a peaceful night. And...I'm still trying to figure out how to post her memorial slideshow...I'll keep trying.
Posted by Krista Layman at 1:37 AM
Sunday, January 20, 2008
Today was the 1st day of our new life---redefined without Kate as we have known her. It's strange...very strange. There are parts of me that feel so guilty for "going on"...parts of me that doesn't know what to do with my time...parts of me laughing hysterically with Seth...parts of me that just miss her like crazy. I'm sure it will take awhile before I feel "whole" again.
In an effort to become a housewife again...something I really haven't done well since Kate's birth...but definitely not at all since July...I am eager to clean! I want to take room by room and just organize, pitch and deep clean and reclaim my house. (Andy has done an incredible job of keeping the house running and Seth fed and clean! He's a great dad!) I started today in the kitchen. I did get all the cabinets cleaned out and reorganized...but with that came the bottles, medicine, baby food...all Kate's stuff I know I will find in each and every room of this house. Some of it I can't wait to get rid of as it reminds me of the pain and heartache she (we) endured each day. Some of it though...it's just hard. So as I move from room to room and sort and organize over the next few weeks...I'm sure the garage will just get fuller and fuller of everything I have no idea what to do with. Andy will love that!!
In addition to tackling the kitchen...I spent lots of time with Seth...we had a great time playing his silly little games that make absolutely no sense to me. But he loves them and he just laughs and smile...great medicine for me! Andy did spend some time today at school getting "organized" as well...but will not be going back until Friday. We are looking forward to spending some time as a "family" this week.
Kate's service and memorial were just beautiful...I couldn't have asked for anything more. We feel so loved by the outpouring of support we have received from so many of you. Thank you to everyone who mourned and celebrated Kate with us. I am planning to post some details from our pastor's incredible message (3 things He learned from an 18 month old)...as well as her memory DVD. Any experts out there who can tell me how to get a DVD on UTube and then to the blogsite...let me know!
Well...Andy and I rented a movie and we're going to watch it now....again normalcy redefined.
Posted by Krista Layman at 9:52 PM
Thursday, January 17, 2008
Another long day....the business of making arrangement can be overwhelming. But we're doing okay...the tears come and go...but the laughter does too (we can thank one little 3 year old for that).
As we continue to be amazed at the overwhelming response and reading of the blog...we wanted to share a link to Kate's obituary for those of you all over the country sharing in our journey. That's one thing I never thought I would do....write my child's obituary...and part of me doesn't feel it even begins to do Kate justice...and I hate the crop-job on the picture. Oh well...she is still too cute and soo loved.
Thank you for your continued prayers. We love you all.
P.S....Many have asked if "the blog" will continue. Yes, it will. Maybe not so much the next couple days...but I plan to keep it up. It may not be everyday...unless Seth just continues to be as cute as he is.
PPS..Many have asked too how Seth is doing. He seems to be doing remarkably well and dealing with it in his own 3 year old way. He uses words such as "Kate's leaving" and "that's far away" and "Kate's not coming back!" Within hours of being home on Tuesday...he wanted to pack up her toys...so we did. We continue to talk with him...and most of all want to reassure him it's okay to talk about her...and assure him that it wasn't her choice. He wants to know why the doctors couldn't fix her heart...don't we all?
Posted by Krista Layman at 10:45 PM
Wednesday, January 16, 2008
Well...we just got back from the funeral home and they were nothing but sympathetic, compassionate and generous. God is taking care of all ends of this...He is working for good!
Visitation will be Friday from 2-5 and 7-9 at D.O McComb Funeral Home on Dupont Road/Pine Valley. Funeral services will be Saturday at 2:30 p.m. at Gracepoint Church of the Nazarene on Mayhew Road with calling an hour before. Graveside service will be at 5:oo p.m. on Saturday in Portland...with a dinner following. Anyone is welcome to attend the graveside services as well as the dinner.
Thank you for continuing to love on us.
Posted by Krista Layman at 3:17 PM
Tuesday, January 15, 2008
We're home. It's so good to be home and to tuck my little guy in bed...but it is hard....so hard.
Posted by Krista Layman at 10:41 PM
This morning at 10:30 am Kate found peace as she passed away in my arms. She went quicker than anyone had expected...but she went comfortably. Andy and I have a sense of peace also which only comes from the assurance of knowing so many of you are praying for us. We are surrounded by those who love and care for us right now. We are getting our things together and will be home later this afternoon. We will post more later as well as the memorial arrangements.
Thank you for taking this journey with us. We are blessed!
Posted by Krista Layman at 12:17 PM
Monday, January 14, 2008
It's been a very rough day. Today was the day that we met with the Palliative Care Team...which included a Pediatrician, Nurse & Social Worker. We also met with the attending who has been managing Kate's care for the past 2 weeks.
And...after all those meetings, talking with our pastor and families, lots of talks between the two of us and tons of prayer... it is obvious that nothing further can be done to fix Kate's heart. At this point, any radical measures taken now would most likely only prolong her life in the hospital by days. It really wasn't a hard decision in that all signs are pointing in that direction: Kate's heart failure is severe and is getting worse, her heart is of "impressive" size and growing (quote from the charts...that not being a positive word in this case), there are no other surgical options and she continues to decline. It was a hard decision in that now we know that we have just days left with our precious Kate.
We have decided to leave her here in Michigan...as we don't wish to bring her home and expose Seth to that environment. Plus...our biggest wish is that she remain comfortable...and that can best be done here in a hospital setting. The Palliative Care Team asked us what we wanted most for Kate...and we told them to feed her icecream and take her for walks.
She did get a walk around the 5th floor today...but only accompanied (and pushed) by 2 ICU nurses. That was tough...because that was always Andy's "job" to push Kate when we took walks. If we get to go again...we want to do the pushing. Kate did seem to enjoy her ride and flashed her occasional cheesy smile.
We are continuing the current meds she is on, which includes 4 doses each of IV Lasix & Diurel. We have noticed that Kate is already getting puffy around the eyes...a sign that her body just can't handle the fluid. We know that each time we walk into the room it will continue to get harder and harder. As her heart failure gets worse and the fluids build up....they will have to sedate her more to keep her comfortable.
Our emotions are running wild right now....just when you think you can cry no more...you do. Just when you think you couldn't laugh...Kate makes you. We are in desperate need of prayer for peace as the next few days are going to be hard...right now even unbearable. Sleeping is hard...as my mind just runs crazy. But...we have the hope of Christ and the assurance He is walking with us...if not carrying us right now.
We spent our evening just loving on our little girl...giving her a bath...reading her favorite book...clapping and smiling with her...praying with her...and just patting her back as she fell asleep....saying goodnight....not knowing if tonight will be the last.
We love you sweet girl!
Posted by Krista Layman at 11:16 PM
Sunday, January 13, 2008
Andy writes: Kate continued to be fussy this evening and needed a little bit more medication to help her sleep. We have noticed her breathing is getting more labored and her weight was up today which usually means she is retaining fluids. We plan on getting up and making rounds and later in the day we will meet with her doctors and a medical team who will advise us on future options.
We never know what to think but we are seeing that Kate's ups and not as up and her downs seem to be more down. Please pray for us to have strength and wisdom. We want what is best for Kate. We fear we have tough choices ahead.
We had dinner with a nice lady from Kentucky who shared with us she did not know how people could ever make it through these things without faith in the Lord. Upon losing dad I realize even more that when we leave this world our faith in the Lord is the only thing we can take with us.
Posted by Krista Layman at 10:35 PM
Kate's been fussing again today. I'm not sure what is going on! At times I think she is fussin' just to fuss! She gets mad and throws her pacifier....it's pretty funny. We are transitioning to oral feedings...and she is doing decently with the formula in the bottle. She never has been a huge fan of the stuff...but for now she seems to be tolerating it if it is really cold.
Nobody is quite sure what is going on...she doesn't seem to be in severe pain...but just plain uncomfortable. I think she is SO done with this place. We have given her some Tylenol and an occasional small dose of Versed! She loves that stuff....and is smiling and happy girl when she gets a dose. It pretty much just takes the edge off and allows her to get some sleep! We left her around 4:30 in hopes that she could get a good nap in.
Speaking of Versed...I think I might have to sneak some for Andy...he's pretty bummed about the Colt's game today. So now I have 2 fussy kids to take care of! (Just kidding, honey....I love you!)
Not much other news to report....just hanging out with our girl...anxiously awaiting tomorrow's meeting.
Love to all
Posted by Krista Layman at 6:03 PM
Saturday, January 12, 2008
"Who is this guy--I don't trust him!"
Kate was doing this alot this morning....I think the high flow O2 was drying out her mouth
"A night at the spa....feels SO good!"
Notice the new paci....she is taking a liking to the green ones now!
All snuggled in mommy's lap after my bath!
My pink jammies are so soft...so is my pink blankie!
Posted by Krista Layman at 11:26 PM
Andy and I walk in to Kate's room this morning to find her playing with her toes, smiling and strong enough to sit up! We both actually held her and she seemed comforted by it. She ate her popsicles and rolled over and fell asleep! She is up to 35 cc an hour of formula. Will post the pictures after we get back from lunch.
We just don't know what to think: honestly one day I think Kate is on her death bed and then a few hours later...it appears as if she is ready to stick around for a long long while. It's so hard emotionally...because you just don't know what to mentally prepare for. I feel so bad about taking all of you along on our ride...but this is just the way it is with Miss Kate. She is still a really sick girl...but this morning she looked better and didn't seem to be in pain.
We are planning to still meet with the doctors (both the fellow and attending) as well as the Palliative Care Team (Comfort Care) on Monday. Right now...it appears early to be discussing all of this...but we the doctors seem to think that many people wait too long. We just don't know. She is back on IV diuretics...and that is still our battle. She has a very severe, complicated heart issue and we know this will take her from us...when...we just don't know!
But for now...Kate appears happy and ready to fight the next fight! Go Kate Go!
Posted by Krista Layman at 1:28 PM
Friday, January 11, 2008
Kate is still struggling. Her diarrhea has come back...once they got her up to 15 cc an hour...a far cry from the 40 she needs in order to get her caloric needs. They are going to continue to advance her feeds...but I'm sure they will stop or alter the plans if the diarrhea persists.
She had an surprise echo today...the doc grabbed the echo tech after he was done with the post-op echo of our roommate..and the report is that her function has not improved and in addition...her tricuspid leak has gotten worse. Surgically...there is nothing that can obviously be done...and she is a far cry from being able to handle any type of invasive procedure/surgery.
She appears a little fluid overloaded...as they have tried transitioning her to oral diuretics. The current doses aren't cutting it...so they are going to try and up her dosage.
She is still uncomfortable, restless and has very little energy right now...she won't even sit up. The nurses tell me she is much worse when she sees me...so I have hung low today. Plus...it is so hard for me to watch...and if she is worse when I am there and I can't console her...I don't want to fan the fire.
So..what does all this mean? Who knows. The doc just wants to continue to manage her medically with increased doses and see how she does. Honestly, I'm not too optimistic right now. She can barely breathe and pump her blood...let alone tolerate feeds....let alone thrive and play. We have altered plans in that Seth is going to go to Portland with Grandma and just Andy will come up this weekend. We don't know that we will get any answers...or that we can make any decisions...but just felt it was better if we could talk to each other and docs w/out Seth. That totally stinks and I'm going to miss him terribly...hopefully he won't be too disappointed...as Grandma does an awesome job of spoiling...I mean entertaining him!
So..that's the news for the day. Wish it could have been better...it's time again for that miracle God....we know You have it in you.
Posted by Krista Layman at 3:01 PM
Thursday, January 10, 2008
Today was a tough day...for all of us girls. The good news is that this morning, her chest tube got pulled! But couldn't you guess...they stopped her clear liquid diet until after the tube got pulled...so we walked into a grumpy baby. We waited and waited...and finally the nurse went ahead and gave her some versed and then told the docs that she was sedated. So...the doc pulls the tube and she gets popsicles and Pedialtye! Then...FINALLY...they start some formula feeds...at a whopping 5 cc an hour. The plan...advance by 5cc every 4 hours till we hit the goal of 40cc an hour...then we can start giving her oral feeds. But..in the meantime...she can have all the Pedialyte and popsicles she wants! (But of course...we've got to keep those limited or she'll drown herself!)
Kate continued to be grumpy all day long. The only time she is not crying is when she is eating a Popsicle or drinking her bottle (those take all of 3-4 minutes) Then... the only way to get her calmed down is with versed, chlorolhydrate or Ativan! I JUST HATE IT THAT IT TAKES MEDICINE TO CONSOLE MY KID....THAT'S MY JOB! But...mommy isn't even good enough for Kate right now.
Every time we came in the room today Kate was fussing and crying. It is so hard on me...cause I can't fix it. It is my hope and prayer that we will know by tomorrow when her belly is finally full if that is the entire problem. I'm beginning to think there are other issues (pain, boredom, uncomfortableness, tiredness)...but why she is inconsolable is beyond me.
So...a frustrating day. I just wish she could tell us what is wrong and what hurts!
Posted by Krista Layman at 10:53 PM
Wednesday, January 9, 2008
Kate is doing okay! Her numbers are all good...blood gasses are normal...she is just grumpy. As soon as they pulled the tube around 2, she went straight to sleep and slept a good while. Then...she woke up...and woke up hungry! And of course, they want her to rest today with no feedings as she had such a rough day. I asked if she was really "that" bad this morning...and the attending, fellow and nurse all unanimously shook their head in a resounding "yes!" It's hard for me...cause I never saw it (Thank God, I guess!)
So...I beg for some Pedialtye! They give in...but she doesn't want much of that once it takes away the thirst factor. I tried it today, and it is pretty awful. So...next time the docs came around, I asked if I could go and get her some flavored Pedialyte...they were fine as long as it wasn't grape (??? ) Well...Kate is still grumpy...crying, unconsolable and my instinct just says she's hungry. So...I go find the attending and ask if she can have a popsickle. His first response: "Can't you leave well enough alone?" My response...."go look at her, she's miserable!" So...he agrees and Kate gets a Popsicle.
She was in heaven...she would take a bite and then just smile...her eyes rolling in her head like she just took a bite of dark chocolate or something! Ah, the simple pleasures.
So...at shift change...Nana and I were at Kroger getting her some orange flavored Pedialtye (which is still awful, but better than the unflavored) and some of her mini popsicles. Hopefully, those will get her through the night.
My gut tells me she's hungry...I hope her grumpiness isn't due to something else...but then...she did have a tube shoved down her throat again today!
Well...both the King women are here now...and we'll probably get ourselves booted out of the PCTU for harassing the docs for food for Kate.
Posted by Krista Layman at 10:52 PM
Well...evidently Kate reads the blog (or has an inside connection) as she was obviously offended by one of my last posts when I referred to her dramas as "middle school caliber". This morning...she showed us all she is totally capable of starring in Broadway. So...sit down...but relax...as it has a happy ending.
So I get the phone call this morning at the RMH that they had to re-intubate Kate and I needed to come over so the doctors can speak with me. Wow! I jump in the shower...and head over within a few minutes...to wait in a consultation room for about 15 minutes. Of course my mind is everywhere...did they push her feedings? Is she fluid overloaded? What happened so fast?
So...in comes the attending cardiologist and walks in smiling telling me she is doing GREAT! He proceeds to tell me that at morning rounds at 8 she was smiling and waving and looked great...but within the hour, her nurse came to get him as she was increasingly fussy and her heart was in some sort of funky rhythm. Well...she appeared stressed...so they went ahead and intubated her and through a blood gas found out that her potassium was high....they gave her some bi-carbonate...she was "back to normal" within a few minutes.
He assured me that it wasn't a respitory or fluid issue...that it was an electrolyte issue and that is one of the "hazards" of ICU life where they are giving her IV medicine. They automatically replace her potassium when they give her lasix...and although they check her levels...they now know they need to check it a little more often. Plus...she was a little on the dry side (she needs more fluid) and that concentrated the levels in her blood...and messed up electrolytes can mess up the heart rhythm. Her rhythm is now fine and all her numbers look good.
When I walked in to see her...I commented on her drama abilities...whereupon...with a tube down her throat...she smiles and claps!! But...the good news is...I have time to write this post as I had to leave the room as they are taking the tube out! Yes...Kate only had the tube for about 4 hours. They want it out as soon as possible...something I am very glad about.
The doc was optimistic in her "turn-around" time and said that if she was really sick or if there were other issues...she would still be sick and not doing as well as she is...as fast as she is.
Wow...another rollar coaster day. Luckily this was a short short ride...but I am so glad that Nana already had plans to come back today. Kate is completely stable...but it will be nice to have someone around tonight. Miss Kate...you are amazing....you are the energizer bunny!
Posted by Krista Layman at 2:11 PM
Tuesday, January 8, 2008
I had one of my "moments" tonight! It's been a frustrating day for me because it is SO HARD for me to watch Kate be hungry. They had stopped her feeds this morning at 8...and they didn't get them started again until after 4. (The ironic thing: she was sound asleep for the PICC line placement...so they didn't even have to sedate her!) Then when they started them again...they started back at 10cc an hour through her G-tube! Kate had been fussy all night...and the Pedialyte and washcloths are just not cutting it anymore. So...at 11 pm I asked when they were going to up her feeds...and they said the orders were 1cc every 8 hours! Well...that got my tears rolling in frustration and sadness...as I sat and watched Kate's tears roll due to her hunger! It is so hard for me to watch her be miserable...poor thing has so much going against her...she at least deserves some satisfaction from some food. I hate that they have to give her medicine to make her sleep because she is so hungry.
Well.....evidently the tears (on my part) were enough to get the nurses to question the orders and after a talk with the doctor...they can now advance 5 cc every 4-6 hours...plus she can have all the Pedialyte she wants! Well...I'm satisfied for the night....but guess I need to get up for rounds and see when she can actually have something with flavor and substance. Feedings are the hardest thing for me! Poke her...take her blood...wake her up from a sound sleep to take her temp....but DON'T make my baby suffer cause she is starving!!
I know they have Kate's best interest in mind and her eating/fluid balance is a major hurdle we have to conquer...but that doesn't make it any easier on mommy! So everyone who thinks I'm so strong....NOT so much tonight!
Other than that...Kate had a pretty good day. The PICC line placement went fine. The central line in her groin finally came out tonight. The area is so bruised and there are so many cuts/scratches and holes from needles and stitches...I was so grateful to get that out of there. It's got to feel better for her to not have those stitches and plastic pieces in her leg everytime she bends her leg. So now, she has the PICC line in her upper left arm and an IV in her left wrist. I gave her a really good bath tonight and got her dressed in her adorable green butterflies and flowers. They were able to come down on her high flow oxygen...and the RT (respiratory therapist) said that probably within a day or so we could be back to the normal oxygen cannula. She is tolerating being off the milrinone just fine.
I did treat myself to a 15 minute back massage by a massage therapist who sets up shop in the hallways of the hospital during Kate's procedure. It was wonderful...as I did something to my back over a week ago and sitting on my bed, hunched over the laptop doesn't help.
Things seem to be going fine at home...besides a call from Cathy today that Seth had locked the door from the garage to the house! Oops! Seth went back to school and loved it. I'm sure he is keeping Grandma very busy. I sure do miss my boys though.
Well...here is a glimpse of a little bit of happiness Kate got today! The only thing with any flavor she has eaten in 4 days! You are a trooper Kate!
Today marked day #50 in our latest hospital stay. It hard to believe we are on our 7th week. It's been 120 days in the hospital out of the last 168 days...that is only 48 days home since July 25th...overwhelming (and sad) when you think about it...but I found this today to keep me going: "Do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what He has promised. " Heb. 10:35-36
Posted by Krista Layman at 11:57 PM
So...Kate is off of her IV heart medicine, Milrinone. This is a HUGE step for Kate and one that will give us a lot of direction in regards to her future and if we can orally medicate and manage her heart failure. We'll need to look for signs of increased fluid, heavy breathing and overall grumpiness. Pray..pray...pray!
And...she is going in at 2 to have her PICC line placed in the right place. Then...we can hopefully never stop her feeds again! She tolerated the feeds fine through the night until they stopped them at 8 for the procedure this afternoon. No diarrhea!! The nurse says she was a happy happy girl this morning. By the time I got there...she realized she was hungry and thirsty and is a little grumpy!
Sending lots of love!
Posted by Krista Layman at 1:00 PM
Monday, January 7, 2008
So I failed in my video making skills tonight....but my star was in rare form. Stupid me to think the movie would change if I turned the camera...I tried to rotate it but I couldn't figure it out. So...you're stuck with a sideways...too long...but TOO CUTE video of Kate. She just cracked me up and I had no idea 4 minutes had passed. I just had to share it...with those of you who have the patience and ability to either turn your computer screen...or tilt your head! I promise more videos...and I will keep the camera in the correct position. If you have the patience...you'll see a couple smiles later on in the video! Kate and I had a great night together!
Posted by Krista Layman at 11:16 PM
Our little miss drama queen can't go through a day without a little excitement....fortunately, today was more like a middle school play than a Broadway production...when it comes to drama! But...NOTHING....I mean NOTHING goes exactly as it should with Kate...there is always something!!
At rounds this morning...they said they wanted to replace her central line in her groin (it's a little leaky) with a PICC line (Peripheral Inserted Central Catheter--a line that goes in her arm...then a catheter that goes all the way up her arm into her chest area). So...of course...that requires some sedation...which required stopping the Pedialyte feeds...which had been advanced to a whopping 3 cc an hour! Well...when I got back at 2...they got the line in her blood vessel...but can't get it to feed up to the right place...and instead of doing chest xray after chest xray to check placement...tomorrow they will feed it through in the cath lab where they have some sort of continuous xray. Good news...they won't have to stick her again...bad news...another procedure tomorrow which means more stopped feeds. The best news is that then the groin central line can come out...her skin there is really raw and and sore from continuous tape changes...and it is just asking for infection since it is in the diaper area. Evidently a PICC line is very flexible and and will make holding even easier.
As far as the feedings...we have the go-ahead to begin formula feeds and advance at a much more reasonable rate to get her back to goal. When I get back at 4...I can give that to her orally! I'm sure it will only be enough to tease her and make her more mad and hungry...but she has learned to suck every CC out of a washcloth...and that seems to pacify her while we wait for the next feeding. There is the thought she may be getting her 2 year molars...as she is really really chomping on those cloths...and shoving the entire thing back into her mouth. They have given her some sort of bacteria product (Lac-something) that should help with the natural bacteria in her tummy.
And....we have decreased the IV heart medicine Milrinone. This is a biggy too...as she has been a little dependent on that during past surgeries. So far...her blood pressure has tolerated it so far.
If the feedings go decent and we can get her off of the Milrinone...we COULD be moving out of ICU by the end of the week. Again...we have to keep this a secret from the princess...as she tends to change the best laid out plans.
Andy went back to work today...the first day back since before Thanksgiving. He says he feels like it is the first day of school all over again. Cathy (Grandma) is camping out on a air mattress in Kate's room and is in the Fort for the week and on Seth duty! Seth is keeping her in line and keeping her busy. Thanks Cathy for watching our boy...you're a lifesaver! And I'm sure Andy will be glad to have his "mommy" making him dinner again!
So...that's about it so far for the day..so far. I'm excited to get back at 4...dress her up in some of her own cute jammies and snuggle. They can draw these "quick procedures" out to an all day event somedays! And...my apologies for some of my medical explanations....I'm sure it makes some of you medical professionals cringe! I try...I really do!
Posted by Krista Layman at 3:18 PM
Sunday, January 6, 2008
Just gotta love those smiles...she does smile a little bigger...but those are hard to catch on my outdated camera.
Kate had an overall pretty good day. We played a lot...and she got into knocking down towers, reading a few books and chewing on a few toys. She is just SO hungry. Their "feeding plan" is enough to drive me absolutely crazy. I am planning to get up early tomorrow and head over for rounds so I can get the lowdown on her feeding plan. Right now she is getting 2 cc's an hour (30 cc in an ounce) It's barely anything....poor thing grabs at anything that appears to be something she can eat or drink.
Posted by Krista Layman at 11:02 PM
Saturday, January 5, 2008
So...again I'm humbled and amazed as I noticed our counter hit 50,000 this morning! Wow...and I am continued to be amazed at how many of you are praying and loving on our Kate! What a great support team!
Posted by Krista Layman at 11:30 PM
Come on Kate...just ONE smile for the camera! (I tried really hard!)
Can you see the pure determination in Kate's eyes when she chews on that washcloth?
All cleaned up...with a token ounce of water. She's so tired!
Posted by Krista Layman at 11:22 PM
I made it back to Michigan in record time...Praise God for okay weather and clean roads. I walked in to find Kate fast asleep. Overall, I thought she looked pretty good...she looked comfy.
My mom and I did talk with one of the attending cardiologists. We didn't hear any earth-shattering news...nothing we haven't heard before. He did feel she is making progress and is thrilled that she has remained off the vent. However...she isn't getting better at the rate they would like her to. She has encountered many set-backs...and although they seem big to us...in the whole scheme of things and the degree of her heart failure...her setbacks are expected and "normal." Her current setback is her feeding as she has had severe diarrhea. It may be caused by her meds and other issues...but most likely is due to the heart failure and lack of blood flow to her intestines. They are planning to just give her a day of rest and resume feeds again slowly and see if she can tolerate them. He said several times: "as her heart adjusts" ---he will make no predictions..but did say that hearts and kids can adjust to leaky valves and holes... and growth and time will only help her. So sound nutrition is the key and our hope for little Kate. It's just going to take time! They will continue with the IV meds until they are assured that her stomach/intestines are properly absorbing it's contents.
So...we wait. We keep on keepin' on. But I tell you...one little smile from that little adorable girl..and it's enough motivation for me! Yeah it's hard...yeah, it stinks...yeah, I hate being away from Seth and Andy...but little Kate is holding her own and givin it all she has...I can do the same for her!
I did hold her a while this afternoon..however...she is cranky. I'm guessing maybe it's her chest tube (it has significantly slowed down...but they are being cautious so that they don't have to put it back in)...plus she is receiving no pain drips...and she could still be in pain. It's hard to see her cranky and not be able to fix it.
A huge thanks to Nana for manning the ship. Although I miss my boys immensely already and can't imagine a whole week without them...I am rejuvenated to get through the week after my 3 day stint at home. We all can't thank you enough for your endless hours of devotion to Kate, hours of driving and just being wonderful! We love you Nana!
We'll have a little photo shoot tonight...maybe I can get a smile out of her!
Posted by Krista Layman at 8:07 PM
Andy and I got quite the shocker today when we received a church email stating that some friends of ours 14 year old daughter, Hope, passed away last night at Riley Hospital. Ken and Delana befriended us very early upon our arrival at Gracepoint and have been a tremendous support to us as they have fought multiple health battles with Hope. Hope was also born with a genetic disorder and has had a bone marrow transplant, heart surgery and dozens other surgeries and procedures. Hope always had a smile on her face and was always so eager to share a smile with Kate and has even helped babysit Seth.
Posted by Krista Layman at 7:33 PM
Friday, January 4, 2008
Hey all...just a few minutes to update you all as I am heading back to Michigan early in the morning and still have lots to do!
Kate has had a decent day. According to Nana...her biggest battle today has been just getting comfortable. I guess she has been cranky and hasn't been sleeping. Finally, Nana reported that she fell into a good, deep comfy sleep around 8ish. She has the cardiology fellow totally stumped and baffled as to why she is so uncomfortable and why nothing is working. Maybe she just needs her mommy!!!
A GI surgeon did come and look at her MicKey button (feeding tube) and he said it looked great. We haven't had a chance to get to Indy for her 6week check-up (ha ha), so we had them check it here...even though it has been a little leaky the past few days...he said it looked good.
Surprise, surprise, her feeds are stopped again! I guess she has had some pretty bad diarrhea..and now the skin on her bottom is close to breaking down. Evidently that is very painful...so they wanted to give her a break. Hopefully, her feeds will resume again around 11 pm. and with some added bacteria to her diet...maybe we can get her stools regulated.
So I am heading back and mom and I will meet with one of the "big docs" tomorrow morning. We still have lots of questions...but according to Nana's chat with him today: He sees progress and sees no reason why she won't be able to go home...but it will take "a while!" When Nana asked how long "a while" was...and said, are we talking weeks or months...he said "weeks!" She has a lot of healing to do before I'll feel comfortable bringing her home...but if we look back to her condition 2 weeks ago...we have made progress! It is very very hard for us (Andy, Nana and me) to see...but I guess it is there. She is down to just 1 continuous med...so that is good.
Well...I will fill you in on the whole report tomorrow after I see my baby girl and talk with the docs. Sending lots of love!
Posted by Krista Layman at 10:39 PM
Thursday, January 3, 2008
So, I've been "meaning" to type a post all day, as I have received updates from Nana. However..as soon as I get ready...the news changes! Yes...it's again been one of those crazy days in the life of Kate.
We started the morning with a great report! She was doing well..sitting up, weaning off heart meds and had even gotten the go-ahead for apple juice! YEAH! Nana held her and things were on the upswing.
Then...I guess around 4-5ish...she started going downhill. Her bloodgas came back poor, she was real irritated...heartrate was real high! So...they upped her meds again, stopped her feeds (again!) and brought in the CPAP machine to put her on continuous positive airway pressure! That's when we got the call from Nana. We called the doctor and she told us that by this time, Kate was doing better, she wasn't critical and there was no need for us to rush down up to AA. In fact...they were seeing overall progress in her with these occasional setbacks. However...Andy and I begin making plans for me to get back tomorrow and for him to follow shortly after.
So...I go out for some much needed coffee with the girls....only to get a phone call later from Nana that Kate has "self-corrected" herself. Her heartrate came down (30 beats a minute)....she never had to go on CPAP and she was chewing on her washcloth and would get feeds again at midnight!
I know...crazy...it's just plain crazy. My emotions are completely out of whack...we really don't know what to think and realize we can't even take it "day by day"....we have to take Kate almost "hour by hour" But...praise God she is stable and "all is well" for now! Seth was almost heartbroken when I told him I might have to leave tomorrow...one more day of lovin' and playin' and one more night of bedtime tuckin' and kissin' will be great great medicine for me to get back at it this weekend.
As far as the rest of us...Andy had a busy, but productive day at school catching up and getting ready to go back next week! Seth and I had a great time at Crazy Pins (arcade and giant ball tent) with the cousins, Elijah and Lucas (and Aunt Amy too!) I just love it when those boys are together...they are so much fun! And as mentioned, I got some great conversation, fellowship, encouragement and laughs with my friends Melanee, Gina and Carrie! Thanks girls for the great medicine too!
So for all you prayer warriors out there...tomorrow's prayer! 48 hours of consistency with NO SETBACKS...I'd be thrilled with just 2 days of good news!
Posted by Krista Layman at 11:31 PM
Wednesday, January 2, 2008
Kate remains about the same. She is now off of the sedation/pain meds and just getting some doses of Tylenol as needed. Her chest tube continues to put out a significant amount of fluid...so that has to stay for now. They are trying to get her feedings figured out...as she can't tolerate too much fluid...and she won't drink the nasty formula, but they don't want her drinking too much (or any) apple juice in fear of too much fluid. Poor thing...just wants to eat "real" food so badly. She has been sitting up and reading some books with Nana. Nana has been doing a great job with Kate and gets answers to all of our questions for us..THANKS!
As far as here...just a busy day doing not much of anything. All 3 of us did get our haircut...we made it to the grocery...lots of playing...lots of putting away of Christmas stuff and toys....lots of loving on a sweet little 3 year old that "WON'T STOP ASKING QUESTIONS!"
Posted by Krista Layman at 10:10 PM
Tuesday, January 1, 2008
Everyone is where they are supposed to be...after some very long hours on the road. Thanks to my dad for spending countless hours driving through wind and snow and ice to deliver his women to their destinations.
So...Kate is stable and enjoyed her bath with Nana. We'll look forward to some reports from that end...as far as this end...I'm hoping for a few boring days at home with the boys.
Sending lots of love!
Posted by Krista Layman at 10:47 PM
Look Kate...a new toy!!!
Thanks but no thanks...I'm happy with my washcloth!
Posted by Krista Layman at 1:30 PM