Lillyann Elizabeth

Winter is here

2011-11-21T22:51:00.000-06:00

It is hard to believe how fast this year is going! With Dylan in school and me back to work, very few doctors visits for Lilly and more for Paul, it is hard to believe that Christmas is right around the corner. Well, let me get to it and update eveyone what has been going on in our crazy lives!

Dylan absoulutly loves school! His 4K teacher, Miss Welhofer, is new to the school and has been a great asset to the Bloomer District. Sometimes he gets home and surprises me with all of the new things he learns. Sometimes I wonder how he got to be so smart! Tomorrow they are actually making all the 4K families a Thanksgiving Feast! It should be very interesting!
Lilly had a little scare a few weeks ago. Her O2 stats dropped, around the mid 70's, and we could tell she was getting tired out easily. Dr Dietz did an Echo and thinks everything is going better than expected and has pushed the surgery back until next winter... just to get it done before she starts school (gulp). Unless she gives us real signs that she needs it. Lilly has graduated from the Birth 2 three program and is learning more everyday. I think that it is so cute when we are in the car and she starts to sing whatever is playing or she will sing Twinkle, Twinkle, Little Star that ends with the ABC's. What a personality she has!
Paul went in to the doctor ro have his hip checked out, we had been having problems with it for over a month. They noticed a heart murmer and thought an ECHO was needed, it turns out he has a hole in the upper chambers of his heart about the size of his thumb and his Aortic valve is "sticky". A Catheter and a Heart MR was done November 9th and Lilly's Cardiologist was called in by me for a second opinion. He will need a heart surgery to repair the hole and to balloon open his valve. Dr Dietz is very invoved, which is great that she takes such care of not only her patient, but her Daddy too. She is wanting to have Dr. Twiddle (Lilly's surgion) perform the surgery on Paul soon. We will know more after the "Meeting of the Minds" with Marshfield Cardiology and Milwaukee Hospital.
We count our blessings daily and thank God for all he has given to our little family! I hope that you have a wonderful Thanksgiving, and remember that those little things are sometimes the things that matter most!

Halloween- Dylan the Woody Cowboy and Lilly the Princess

Update

2011-07-11T20:42:00.000-05:00

Lilly is doing wonderful! She final hit 20 lbs- the at home scale. Her eatting has not improved she can go through 2-3 days of barely eatting and then 2 or 3 days where she will eat all day long?! Sometimes she boggles my mind.
I starting working at a local auto shop and the kids were placed in daycare. They did very good however it is so expensive I dont know how long they will be able to stay in there.
dylan is so excited to be going to school this year! Everytime we go into Walmart he tells me he needs a backpack.
Well sorry this is short but we have been so busy! Thanks for the continued prayers!

Where did May go?

2011-05-31T09:14:00.000-05:00

It has been a busy month and looking back I can't believe that May is over already. Since Lilly's GI surgery she has been doing wonderful! I have not heard one complaint about her tummy hurting anymore and the site is completely healed. I thought that she was active before.... gosh has she been moving now.

Since the last update we and pretty much graduated from the birth-2-three program. They will just be visiting once every three months to ensure that she continues to move forward. It is a bittersweet moment when you get so close to therapists and then they just go away. You are so happy to not need the help anymore and then again it is like a friend that moves away.

Lilly and Dylan have both been enjoying the spring/summer weather. Memorial day actually kicked off our first camping trip that Lilly has ever had. We stayed local (only about 10 miles from home) just to make sure that the kids could handle it. We went to a campground and parked ourselves close to the playground so they could play and we could sit back and watch. Paul and I spent to majority of the weekend fishing for, what I now found out were Mud Guppies.

Dylan will be starting a pre-4K program in a couple weeks. The school provides this to allow children to get a taste of what the actual school life will be like. The class will only be 4 days and three hours long (just as long as school will be). He is so excited!

I will be getting a full time job before long and the kids will be going to daycare for the day. I think that it will be good for both of them to develop social skills with kids their own ages. I guess we will see how it goes!

Thank you for all of your support and prayers.

Day 3

2011-04-15T20:31:00.000-05:00

What a great day! Lilly was placed on a Full liquid diet so she was able to eat as much ice cream and chocolate pudding as she wants! Boy is she a happy girl.

We also were able to get the IV removed. Lilly was having troubles getting where she wanted to go and made a fuss about it. Now it is out and she has been running around the Peds floor (literally) and finding any toys that she possibly can. So far all of the nurses have been really good with our requests which has given me a sense of comfort with leaving her there overnight.

I really thought that we had been here, done that sort of thing. What was I thinking? It has been over a year since she has been hospitalized and I forgot how mentally and physically depressing these ordeals are. We are all ready to come home and stay there for as long as possible! Maybe tomorrow afternoon if all goes well with solid foods.

Post surgery day 2

2011-04-14T13:53:00.000-05:00

Lilly is doing great today. She is off Morphine and is able to have normal Tylenol to control her pain. She is still on a clear liquid diet so she has been loving eating slushies and eating ice chips. We had to distract her in order to go and eat. I would feel too bad easting in front of her when she has been asking for a cookie all day. I hope that tomorrow she will be able to eat some real food. She certainly has her normal attitude back and will only let me hold her (daddy just does not cut it)! I almost forgot how uncomfortable the chairs are in St. Joes Hospital.... I sure do remember now!

I will let you know how things are going tomorrow!

Surgery is over

2011-04-13T17:20:00.000-05:00

Lilly was 1st case this morning and the surgery started about 9:05 am. She actually went with the Child Life lady as they counted the "funny hats" (surgeon hats). It was just enough time for us to get some breakfast before they called us and told us she was done 9:50 am or so.
She has taken this whole thing very well and has been quite a trooper. She has been sleeping most of the day and has only woke up when it was time for her Morphine. She has her normal "don't touch me" attitude and I can already see her getting back to her normal self tomorrow. She is only able to eat a few ice chips (which she doesn't mind) during the day and possibly tomorrow we will be able to start foods again.
Dc. McGill told us not to worry if she doesn't have appetite for a few days. All is well now and I will let everyone know how things go.

GI Tract surgery

2011-04-11T15:43:00.000-05:00

Hi Everyone! I just wanted to post before we head off tomorrow night to Marshfield. We will admit her at 6:15 am Wed. morning. I will try to update as best I can throughout the rest of the week. We are hoping to be home Saturday night but we all know how that can go... However, Lilly is still really good and she even ordered her own breakfast when we went out Sunday. "Egg ummmm bacon!" So yes she got a scrambled egg and two slices of bacon and ate every bite! She has been doing really well as long as she gets what she asked for. If not, she may take a few bites and then fight with you until she can get down.

Dylan will spend the rest of the week with Paul's Grandma and Grandpa. Dylan is excited to be there and is hoping the Paul's dad will take him fishing Saturday. We'll see!

I will post as soon as I can! Please also put a prayer in for my niece tomorrow, she is having a kidney surgery in St. Paul Minnesota. We hope that this will fix everything for her!

GI appointment

2011-03-31T11:23:00.000-05:00

It is official Lillyann will need stitches. It is actually more like a surgery as what they told me...

This is like the picture they drew us. The circle is Lilly's stomach and the curved line is her skin. They will disconnect the tube from the stomach and the skin and then put stitches in each. They are more worried about the stitches going on her stomach because if the stitches do not hold, it can be very bad. We will be first case on April 13th and will remain in Marshfield for at least three days.
I am confident that this is what we need to do to ease the pain and restless nights. I will let you know how everything goes and please think of Lilly on the 13th!

Birthday Pics!

2011-03-29T15:50:00.000-05:00

Let me thank all of the family and friends who came to our house. It was definitely crazy but a lot of fun too! Lilly and Dylan both walked away having a great time with friends and family and a wonderful night sleep! Paul set up the Barbecue in the garage and we grilled (even though it was 20 degrees outside), while the inside of the garage still smells like grill two weeks later.

It is amazing to look back on all of the wonderful things happened this year. Dylan is now able to be outside and I don't need to worry to much about him, besides getting his bike stuck in the mud. He actually helps out around the house and fixes whatever needs to be fixed with Paul. We finally got our letter and Dylan will be starting 4K in Bloomer this fall. Paul and I got him a Leapster 2 for his birthday and I can already tell the difference! He can now write his name, recognizes some numbers and letters and can add. He is ready and excited!

On April 1st 2009 Lillyann went in for her first open heart surgery. We spent that day huddled around playing cards in the waiting room.....waiting to hear about our little girl. Now two years later I can look back and not cry about the struggles she has faced, but the triumphs she as overcome and excelled in. Mostly she has beat every 24 month test they can throw at her. Even her speech is at a 30 month level (putting two or more words together) and her signs have reached at least 40. Thank you Signing Time!

I promised to put some pictures up, sorry it has taken so long! We go in to have a consult with the GI surgeon tomorrow in Marshfield. I am a little nervous but we will keep an open mind!

Opening of a new window....I hope

2011-03-13T22:23:00.000-05:00

Lilly's doctors appointment went good with Dr. Jermey. She is in the 25% for her height and the lower 3% for her weight (17.98 pounds). She is now done with her shots (besides flu) until school! This will make her very happy and hopefully enjoy going to the doctors again. Jermey does not think that it is wise to break her of the bottle just yet as all we can get her to eat is rice and noodles. He told me that he would rather see a few cavities then having to put the G-tube in again. She was also placed back on Prevacid temporarily to help with the discomfort along with a topical cream to keep out infections. I hope that it will work!

My fight with the insurance company failed twice. They will not pay for the 1.5 cal Pediasure now that she is off the G-tube. I, along with both Dr. Jermey and Dr. Julie Dietz have pleaded with them but it was unsuccessful. I now worry that as our stock dwindles, so will her weight. As long as she is not loosing we will be able to keep her from having the G-tube again.

Because Lilly's G-tube site is still leaking, I was able to speak with a adult GI surgeon in the Chippewa Falls area that may be able to at least do a consult and save a trip to Marshfield. I will know more this week if he is willing to do it or not. Dr. Jermey thinks that if we fight hard enough we may be able to get a anesthesiologist that is qualified to sedate Lilly if Dr. McDougall is willing to do the stitches too. I know it is a shot in the dark to ask this of a adult surgeon because Lilly is still a high risk patient.

The kids' birthday party was great! They got tons of things from the family and I think had more fun just having everyone here. I will post pictures soon. Thanks for checking in and please say a prayer for our friend 4 year old Carla Wright, she was placed onto the donor list for a heart today. Pray for a heart and the strength in herself and her family to make it through this continued HLHS fight for life.

Fighting with Doctors are GREAT!! NOT....

2011-03-07T20:44:00.000-06:00

Lilly has had her G-tube out for 4 weeks now. They told me that it should be fully healed by now, however, it is not. Called and they want me to drive to Marshfield twice just to see if they WANT to put stitches in. NO not gonna happen! Talkin' with her pediatrician on Friday for her 24 month check up to see if we have other options.
It seemed like because Dr. Fish did not want to have the tube removed, now he doesn't really care. Yeah, he can take his job and shove it!

I will let you know how the appointment goes on Friday.

No News is good News!

2011-02-23T10:29:00.000-06:00

Sorry for the updates... or lack there of! I have had nothing really big to post on. Lilly's ECHO in Marshfield went well and we have been dealing with the G-tube hole to close. Some days I think it was better when it was still in. She can be uncomfortable and the site itches quite a bit. Eating has been so-so and we still haven't inched past the 18 pound mark. She is just so active that it can be hard to get her to sit down and eat a good meal. Pork fried rice is the new fav along with dried cereal that she can eat on the run.

Speach is now coming once a month along with her therapy to improve her balance. Within the next few months they believe she will be completely caught up in her milestones. She is in love with her "Signing Time" videos and can sign "Leah" (the little girl on the video) when she wants to watch it.

A few weeks ago in Wal mart, something amazing happened. Paul and Dylan had gone into the restroom while Lilly and I waited outside. She had turned to run and ran right into a Lady (Wal Mart was packed by the way). I apologized and we started to talk. Come to find out their son was a HLHS baby (notice how I say was). He had done his Norwood when they discovered a hole between his heart chambers. The blood pushed into the left chamber and it GREW! He is now a normal baby, although he will need some reconstructive surgeries to his pulminary artery. I was in so much shock I forgot to even get their names :(.

Dylan is being enrolled into 4K and we are awaiting the paperwork. He is so excited! I have been working with him more and he can write is own name.

With Dylan's 4th Birthday and Lilly's 2nd Birthday right around the corner, I will post some new pictures as we are having their party on March 12th at 5 PM. Everyone is welcome to come if they can for supper, cake and ice cream!

Wonderful day!

2011-01-31T18:11:00.000-06:00

Just wanted to fill everyone in about Lilly's appointment today. When we got there (in the snow storm) she was given a drug a little stronger than Benadryl called chloral hydrate. This medication was just what we needed! It put her to sleep and gave the rest of us in the room comic relief. Lilly was in a "drunken state" and could not stand or sit and giggled a lot! I cried laughing so hard!
Under sedation, her O2 stats stayed in the low 90's (awesome) and her heart rate was normal. We got a wonderful Echo which showed us that she will be able to wait until a later time to do her final Fontan surgery. She is doing so well that starting next week we are lowing her Spironlactone to once a day, within the next month or so this will be taken off altogether. Within a few months, at her next Cardiologist appointment, we will also take her off of the Captopril and onto a medication that can be taken once per day. This means that she will be on THREE medications and it will only need to be given once a day!! Yay! Lilly has made so much progress with her heart that Paul and I joke that she is "fixing herself".

Oh yeah, her G-tube is now just a hole that will close by it self within the next few weeks. We are placing Tums with gauze over the hole where the tube had been to decrease the acid that touches her skin.

After the appointment, we ate lunch, which she scarfed down, and headed home. Lilly slept all the way home and was still woozy when we got home.

Tomorrow Dylan, Lilly and I get to go see the eye doctor here locally. I am hoping that the kids sleep in so I can get some house work done and still have at least a few hours of sleep. Thank you all for the prayers and support because they have been answered yet again. I will talk to you soon with anything else that may pop up!

A Date Has Been Set!

2011-01-27T15:03:00.000-06:00

Monday, January 31st, Lillyann will be admitted into the Marshfield Clinic in Masrshfield. At 7:45 Am she will be sedated and the G-tube will then be removed!! They say that there will be no stiches, only Tums will be used to "suck-up" the acid until she is fully healed. An Echo will also be done along with some blood tests for her Genetic study. I am a little nervous as Lilly has not been sedated for a long time. Now that she is older, I know that this will be hard not only for the nurses, but mostly for me. I am confident that she will come out of this even more crazy that what she is going into it.
We actually opted to have her sedated to ensure that she would be in no pain and we could get a really good Echo after the G-tube is removed. I will be sure to update everyone when the time comes.

ER visit

2011-01-18T20:45:00.002-06:00

Hi everyone! Last week was pretty eventful so I wanted to fill everyone in.

For all of you that know Lilly, she is a climber and loves to get into trouble...a typical 21 month old starting her terrible two's a little early. On Wednesday night, Lilly had climbed onto our dining room chair and before I was able to intervene, fell off backwards and smacked her head pretty good. I ran to pick her up because she had not cried and her eyes rolled to the back of her head. Let me just say that my heart stopped and boy did I freak out!!

She had knocked herself unconscious and the 911 call was made. Surprisingly the first responder team got here pretty quickly...so did the phone calls from our worried neighbors. Although they had stopped at the next door neighbors thinking it was them who called in, who informed them they should check to see if I was the one who made the call. I don't really blame the First responders as we have 30 some inches of snow and you can't really see the fire numbers very well. When they did arrive to our house, she was very white but was alert when they arrived but they wanted to take her in to be checked out just in case. The first responders could not have handled the situation better and both Lilly and Dylan got new stuffed bunnies from the EMTs.
Dylan was prepared to stay at the house with the first responder Rick, however Grandma and Grandpa followed Paul home and arrived just as Lilly and I were getting into the ambulance.
Lilly actually did really well on the trip to Chippewa Falls (it is an hour drive) and Rick taught her a new word, "bunny". He was really a lifesaver on keeping her still and quiet on the ride. Her O2 stats were 90 on the ride over ( I knew that was wrong!)
By the time we arrived, Her O2 stat was right where it has been, 80-85%. Lilly was back to her normal self and we could finally see the bruises from her fall. One above her ear, on her shoulder and one on her hip. Needless to say she had had some other falls that week and had fallen out of bed and played hard with Dylan. These also made "wonderful" bruises on her head; a goose egg on her forehead and one on each of her cheek bones. The ER doctor swears that Dylan is beating her up, I said "You should see my son, Lilly is the one doing the beating". This is true.... Lilly loves to be "one of the boys" and it can be funny the things she can come up with.
Anyway, all was well and she was released within an hour.

Thursdays was her Cardiologist appointment (no, we did not do an ECHO). Lilly did amazingly well and did not cry when they listened or did her blood pressure or weight, 17 pounds 14 ounces by the way!! We should be able to push back the Fontan farther.. they are now thinking around 3-5 years old. She did get approval to have the G-tube removed and we are looking into a date and I should know more by the end of the week. They will sedate her for the G-tube removal and then we can make sure that we get a really good ECHO as well, it is better for all of us. This will be done in Marshfield because our local hospitals are not equipped to handle her if something would go wrong.

Friday, we had a routine appointment where Dr. Jeremy Forster put in his two cents about her G-tube being removed. He thinks that we should get some special casts for her arms and legs, along with a helmet and make her into "Iron Baby". We all were able to get some humor out of the activity level of our dare devil.
I will let everyone know when the appointment will be scheduled for the G-tube removal. Until then stay healthy and God bless.

Lillys GI doctor appointment

2011-01-05T13:33:00.000-06:00

First, let me say I am happy that the newest member of the Smith Family arrived on December 28th a Happy Baby boy, Griffin. I am so excited to be able to meet him when we get together next!

Okay, down to business. Lilly's doctors appointment yesterday went suprisingly better than expected. She is still at 17 pounds (7.72 kg) although she is eating non-stop. We have switched her off of the Lactalose ( a laxitive) and moved to a chewable Peda-Lax. So far so good and I like not needing to struggle to get her to take it! She is also in the 10% for her hight and only 3% for her weight. Once we can get her weight closer to her height, we will look into having the G-tube removed. Dr. Fish thinks theat we will change the tube out for a helmet as he witnessed her "terrible two's" fisrt hand. She climbed onto the swivel doctors chair and attempted to grab the blood pressure cuff when the chair slid out from under her and down she fell. She of course was unharmed besides her pride. I think she was more mad at the chair for moving on her...

On the 13th, we have her Cardiologist appointment along with the awaited ECHO. We will see how this goes as I really do not want to make a trip to Marshfield in the wonderful Wisconsin snow.

That is all for now, both kids are sleeping and my house is a mess!! My time to clean. Prayer to our heart families for continued health though the winter months and Congrats to the Smith Family on their newest addition!

Happy New Year!

2011-01-01T22:12:00.000-06:00

I am sorry that the posts have been rare lately. It has been so crazy with Christmas and working that when i do have the time, I am just so beat down that I am unable to write or update you.

November and Thanksgiving was pretty uneventful...thankful that we have all pretty much been healthy and hospital free. It made me realize where we were a short year ago. We did manage to take some family pictures ( after two different attempts...thank you Sears) and got some really good ones. My poor Blazer broke down, of course on the coldest day of the year so far, and I missed a few days of work and then the runny nose sickness cost me a few more days off.

December was very crazy with the Holidays and family gatherings approaching. In mid-December, Lillyann had a weight check...17 pounds!! Can you believe it? I know that I couldn't! We have not even used her G-tube more than twice in the last three months. And the kicker, two days before Christmas, I lost my job. I knew that it was coming but it still does not make you feel any better.

On Christmas the kids made out like spoiled bandits.. what you would all expect! We went if for Synergist (sorry if the spelling is incorrect) which Lilly will get monthly until Spring to prevent any respiratory bugs.

As for the New Year, we have four appointments in January 2011 a few for a doctors check-up and a GI check along with the attempt to do an ECHO. They will attempt to do one without sedation here at our local office, but if she doe snot allow it, they will do a sedated ECHO in Marshfield Wisconsin. This ECHO is so important as this will give us a better idea of how her heart is working and if any medications need to be adjusted.

We pray for all of our heart kids and families daily and hope that everyone has a happy and healthy New Year to come. A big and warm wish to the Smith Family for their Baby number two!!! Hope that you enjoy the pictures!

Kix works wonders for quiet kids!

this picture wasn't planned. Just started snapping them

Dylan being Dylan

Cute as can be!

Low Digoxin Levels!

2010-10-26T09:21:00.000-05:00

The past few weeks Lilly has been acting as if she had an ear infection, so I finally took her in. She had not been running a fever, just had some balance issues and was pulling at her ears.
Took her in yesterday to see Dr. Jeremey Forster in Chippewa Falls. 'Ears look good, she looks good, let draw blood!' Well, tests came back with nothing that would make her dizzy although her Dig' levels were pretty low, 0.08 to be exact (take my word it is low). Which means that her Digoxin dose may need to be increased because she had gotten off the Furosimide 3 weeks ago. At least we found out before something happened. The Digoxin is one of her MAIN heart meds..... yeah it would not have been good!

Anyways, on a lighter note we are up on weight,(7.3kg) 16.1 pounds!!! We have crossed the great 16 pound mark Yay!

Well, that's all for now! I'll let you know when I hear about the meds changing.

It's October but Summer weather!

2010-10-14T21:31:00.000-05:00

These last few weeks are too good to be true! We have been trying to enjoy the nice weather as we "Mid-Westerners" know will come to an end very shortly. I was upset that we were not able to get down to Al's Run/Walk this year as with work and everything else being so crazy! But, we had a great weekend anyway!

Saturday, Paul and I had a much needed Date Night-well, we were both working but we were together! Spend the day at our friend Glenda's putting in a patio door and window. Then we sat around by the fire and had a few drinks! It has been a while since we could go out all day and not need to worry about the kids!

Sunday is normally our "cutting wood" day to maintain our storage for the winter. However, we all went to breakfast and then headed up to Cameron for their huge Pumpkin patch. To those who have not been there, let me elaborate...Pumpkin cannon, bounce house, petting zoo and of course the corn maze and fresh caramel apples! There is a boat that is lifted up by straw bales that has tunnels running under it, this, and the petting zoo was by far both of the kids' favorite!

Monday was Lilly's first Nutritionist appointment with Tracy. The appointment was good overall and Lilly was actual up to 15.5 lbs (7.05 kg). We are adding butter to everything and Tracy is actually wanting us to feed her ice cream and peanut butter as much as possible. She gave us a list of some high calorie foods and some recipes to try. We are now adding 60-75 ccs (going up another 5 ccs bi-weekly) pediasure to her morning and bedtime meds. So far I can tell that her little cheeks are starting to pump up again! Maybe we will finally get out of size 2 diapers!
Thank you for checking up with our little family and I hope that everyone enjoys the rest of the fall season!

Sleeping with her new winter hat

Yes this is outside the petting zoo!

Nap time + a 1/2 hour tractor ride=not so happy Lilly

Under the boat in the tunnels

Some stuff, different day!

2010-10-02T22:34:00.000-05:00

Lilly has been doing really good! Eating more and more every day. Ramen noodles are her favorite...I must say! It is an amazing feeling knowing that we have not been admitted for almost a whole year.(knock on wood!) Her GI doc seems to think that she is underweight, well... she is, very underweight! I am sticking to my guns, "NO G-Tube!" and as much as he hates it, he can't deny me that.

Her O2 and heart rate has been good. 85% and normal heart rate. Weight...like I said she is really underweight, she was at 6.8 kilos (14.5 lbs) and for being 18 months old is in the bottom 1%. Oh well, what can they expect! We also got off her diretic (furosimide) completely. So far so good.

We are now on 1.5 calorie Pediasure and have some recipies that actually sound kinda tasty. We will give those a try starting next week, along with the Diatary journal we need to keep. We will see a Diatician every two weeks until we get back on track.

With cold and Fllu season upon us, of course Lilly and the entire family for that matter come down with it. Dyaln's lasted 48 hours but the rest of us had been stuffed up and runny nose for the last week. Lilly seems to be tolorating it fairly well.

She has not figured out how to climb! Yep, I am in for it now! Window cills, coffee table (kitchen table for that matter) and everthing else to try to fall off of!

Thinking of our heart friends and familys always! God Bless and take care this Flu season!

Wedding in Nebraska!

2010-09-01T12:21:00.001-05:00

The HHC Picinic was wonderful. How time flies by when your "heart" families go their seperate ways!

Our next adventure took place August 25th until August 29th in Bassett Nebraska.

Paul's Brother was getting married and we left with Paul's parents to the Corn husker State. The ride out there was not too bad,..... just 10 hours long! We left around 6pm and arrived at the hotel by 4am the next morning. This was nice because the kids slept most of the way and were able to watch ELMO'S WORLD the entire way there.

Here we go!

You can tell he's excited!

It was so hot and windy while we were there that the kids couldn't stay outside for too long. I think the tempature the whole time was highs of 95 - 100 and winds around 25-30 mph! At night, it was cool, almost too cool!

We had a great time visiting and we even tried "Rocky Mountian Osters"( let me just say that they are NOT from the ocean...or any body of water for that matter!). Here are some great pics that we took while we were there.

Rehearsal dinner at the Bootstrap in Bassett NE

Dessert~ yep she was a mess!

Waiting on the preacher-yes, she was late!

I love this picture!

Grandma Lisa with Lilly

We can see who wears the pants!

Thinning her blood~ it was empty just fyi

Moose (Chris and Paul's Cousin), Kirk (Brandi's oldest brother), Chris (Groom),

Mikey (Brandi's youngest), and Paul

My Lil' Man!

Lilly is really happy!

Daddy and Lilly

Her Butt makes her look like an ant!

Dylan swimming all my himslef, well, almost!

Grandpa John and the kids at the hotel pool.

We spent a lot of time in this small pool. The deepest the pool went was 3 feet!

Lillys health is just great! We are now on 1.5 calorie Pediasure and her weight has been steady around 15 1/2 pounds (7.10 kg). At least she is not loosing! Heart and lungs sound great and now we wait until Ocober 1st for our next and hopefully last Cardiologist appointment of the year!

I can't wait for the holiday to come so we can see Chris and Brandi again! With them living so far away now, we all miss them a lot. Congrats guys and we love you.

Quick weight loss!

2010-08-07T00:32:00.000-05:00

Lilly's weight has dropped very quickly in the last few days from 7.79 kilos to 7.1 kilos in 2 days! i finally found a nutritionist that would listen to my concerns and we are starting her on Canola oil with her bottles, 1cc per 2 oz. We are also going to try mixing the Pediasure with some Coconut milk to see if this helps at all. Wish us luck! I will keep you posted as the weekend goes on.

What a Month!

2010-08-05T10:15:00.000-05:00

July was absolutely crazy! We have now moved to our new home across the field as of last weekend. From a 3 bedroom to a 5 bedroom plus 2 office rooms, yeah now I need to go shopping to fill this house!

Our new address is: E7601 1400th Ave
New Auburn, WI 54757.

Thank you to Paul's parents who has stuck by us and finished the house! We have had many nights with few hours of sleep, while visions of trim guns danced in our heads! Dylan helped us paint the new house and is continuing to help us put up the tin on the "old house" shed.

The kids are enjoying the room and I find it amusing when Dylan chases Lilly around downstairs and then Paul chases Dylan upstairs. Lilly really is putting on the miles walking back and forth across the house. Her balance is much better every day.

We have had a big scare this past Sunday. We had laid the kids down for bed and sat down to watch a movie. Around 11pm Lilly was screaming and Paul had gone up to find a nuk for her. She had the feeding bag tube wrapped around her neck three times and also around her leg. Needless to say, We have not used the G-tube since.

I have talked with Lilly's GI doctor who is giving her 6 weeks to get her weight in control otherwise we will go back to the g-tube. Our neighbors have suggested coconut milk, as if is high in good fats and other vitamins and minerals as well. Pedisure also has a 1.5 calorie drink coming out in a couple weeks. So instead of 1 calorie per cc it will be 1.5 per cc; we are not sure where to get it yet but this is another option.

August will be a busy month as well for us. In two weeks we have a Herma Heart Picnic at the Milwaukee Zoo. We are looking forward to seeing all of our heart friends and to visit at the zoo.

Then towards the end of the month, we are making another trip to Nebraska for my brother-in-laws wedding. Paul and Dylan are so excited to see Chris and Brandi. Me, well, I am too, but I am not looking forward to to long drive!

My job is going wonderful and we are possibly having people work from home starting next month. This means I wouldn't need to drive an hour to work and back.

Other than that things are great. Pray for our heart families, and a special prayer for Caden and his baby sibling coming soon- don't scare Mom and Dad too much Caden!!

Thank you for stopping to check in on us! Have a great day!

Found My Camera!! With more pics!

2010-07-06T23:46:00.002-05:00

Oh... Funny thing happened this morning! Dylan had gone outside to play and he opened the door for Lilly (without my knowledge, while I was doing clothes) who was in nothing but a diaper. He comes running into the house screaming that Lilly was in the pool. (not really a pool, sand box full of water). Needless to say I hauled outside to find her sitting in a turtle sandbox full of dirty water looking as if she were taking a bath! Splashing around....just being a typical kid!

Lilly just so darn CUTE!

Lilly pushing her toy looking innocent

Getting into trouble!

Lilly taunting Koda

Lilly and Dylan enjoying outside

Dylan being his dirty self

Milwaukee April 2010

Chris, DJ and BB Harper

Ben with Mom, Dad, Big Brother and Big Sister

Ben Meert 2010

Ben and Gabbie

Gabie with mom and Dad

Jack with Mom and Dad

First steps!

2010-06-28T23:41:00.000-05:00

It is amazing how seasons fly by and how fast kids grow! Yesterday night, after I had gotten home from work, Lilly stood up in the center of the Living room and took a step. As she was taking that step, she started to loose her balance and took two more quick steps before falling over!

Cardiologist appointments are going good as well as GI appointments. We are starting to wean Lilly off of her Metroclopromide (appetite medication) and see how she does. One dose per week is what they told us to do; so far so good. Dr. Fish, her GI doc, is thinking by our appointment in October, we may need to move up a size on her G-tube. Dr. Dietz, her cardiologist, keeps reassuring us to let her be a kid! Not to worry about her weight and know that she is not far behind normal kids her age.

We took the kids to the Lake for the first time this summer. Dylan is far braver than we give him credit for....he was walking out to the deep end and I kept yelling at him not to go any farther, but he is 3 and a boy... he kept right on going out to his neck before he stopped! Lilly is just as brave. Trying to crawl in chest deep water and eating as much sand as she could before we could stop her, just wasn't working all that great! They were both mad when we had to leave.

We have been working on our "new" house and will be moved by the end of July. This has been tough with work because we are not able to spend much quality time with the kids. But it will be WELL worth it in the end!

Oh and just for everyone's information, Baby Elizabeth (Ellie) is home! Just found out she has been home since the 6th and doing great! Congrats to the Potters!

Not to mention all our other heart families who (knock on wood...) are doing GREAT too!

We have a Herma Heart Picnic coming up in August and we can't wait to bring the kids down to Milwaukee Zoo and see all our friends!

Here are some pics I found (I will have more when I find my missing camera ☺)

Dylan playing in a box at Uncle Chris and Aunt Brandi's

new house in Bassett, NE

Lilly just chillin' first time in NE

also Nebraska

Lilly and Boone in Nebraska

Dylan's 1st Head Trauma (yes that is blood running down his face and he is smiling)

my niece Julie, nephew Derek, Dylan, Me and Lilly

Visiting My brother Jason and his girlfriend Sara in Minnesota

Dylan taking a cat nap

Lilly with Daddy's hat waiting for her check up

My hunter during hunting season 2009

Shoot them deer!

YEAH LILLY

2010-06-19T09:45:00.000-05:00

We had her Cardiologist appointment yesterday, which went wonderful! We did not do an ECHO or blood work, just had to take her clothes off for a weight! Dr. Dietz thinks she is doing wonderful!!! She told us to not worry about her weight and let her be a kid! Over all a great appointment

What's new!

2010-06-17T23:16:00.000-05:00

There has been so much going on this past month, I thought I would update everyone. Dylan and Lilly are at a sitter's while I am at work and they are loving every minute of it. They have two other kids, sand box, pool, you name it....plus, other kids' toys are ALWAYS better than yours (even if you have the same one at home). Lilly has taken 'steps' one here, one there! Mostly when she thinks you're not looking☺. Her speech is still behind so starting the end of the month a speech therapist is coming out (one who works with Speeking, not eating (like the one she sees now). She can say about three or four words, Mama, Daddy, Yeah, and the occational word we make out for something.
Lilly's weight is still a concern, we are still struggling for the 16 pound mark. Her intake orally has dropped drastically and her overnight feeds are slowing as well. We can not seem to keep it all down! We have a cardiologist appointment in Chippewa Falls tomorrow to try to dig a little deeper into the problem. An ECHO is scheduled, if they can not get a good one, we will go to Marshfield for sedation. There has been talk also of an Endocrine study (hormone study) I have done some research and this sound like it could be an issue, but we will have to do the tests to know for sure.
Tuesday, is Lilly's Gastric doctor. All should go well here, I LOVE the new Mini one button!!
Other than that, Today is Me and Paul's 5 year Anniversary and we are going strong! My job is great! I am enjoying my kids more and get time to play with them....actually play, I use to WATCH them play, now I can be part of the fun.
Please pray for our heart families, the one's who need it and also the one's who do not. Count your blessings daily and thank God for the greatness in your life!

No Bad News!

2010-06-08T12:09:00.000-05:00

Sorry about the updates, or lack there of. I have starting working and am on my 3rd week and loving every minute of it! The kids are going to a family friends, who is by far cheaper than day care! Lilly is doing well, we have a GI appointment on the 18th and a Cardiologists on the 22nd. We may need to do a Eindocrin study to find out why our weight gain is so slow. She is taking about 16 oz during the day of Pediasure and 500-600 cc's though g-tube at night.
Sorry to make this so short, but I am at work....Computer at home is down!!
We thank all of our loved ones for their support, knowing that each day is a blessing!

New Tube!

2010-05-12T10:21:00.002-05:00

It is official! Lilly now has a AMT Mini One! It is so much smaller and looks so much better. I am so excited to try it out.

I should have left the room....

2010-05-06T13:45:00.000-05:00

We are home, Mic-key button is in. I think that was one of the hardest days that I have had in a long while! Our original plan had been for us to get the Mini One button, but we all know that things don't go haw we expect them too. Our button did not get in yesterday so we had to revert to a Mic-key again. As we drove to Weston, Lilly began to vomit....often! By 40 miles in she was out of clothes and wearing Paul's sweatshirt. It seemed like everytime she would take the bottle, it came back up! Someone may say, "well, just don't feed her", I am sure they haven't had to hear a child scream for more than 5 minutes! She was hungry and even more-so because she couldn't keep anything down.
When we arrived, being that we REALLY DIDN'T have a "set" time we were in there an hour; with a crying child I might add, before we were seen. After they came in it went pretty fast. They asked if I wanted to leave the room... I thought I was strong, and part of me wanted to know what she had to go through.... I think, so I may understand. Well, let me just say, I didn't! I hope no one has to ever see doctors dialating a child G-tube!! To put it bluntly, the shove metal rods into the hole to make it bigger, all of which without medication, oh wait....Tylanol. Yep, painful... I balwed right along her!
But now we are okay at home and 13 1/2 punds again. If you have noticed, she lost a pound in three days (it took us a month to gain it). Tuesday our new tube should be in and we goto Chippewa Falls to have it put in. This won't be a big ordeal, just a tube exchange. But I am excited for that!!

Words from our dearest friends....The Buchmann's~

2010-05-04T15:29:00.000-05:00

I have put this here in honor and memory of Carsyn. A child that died too young from hlhs. These are words from her mother.... very sad and also very true...

I feel like I've joined a club...not just any club. In this club, none of the members have asked to join. One day, they just force you to be in it. You don't get to choose...To be in the club, you have to pay an incredible price...a piece of your heart, a part of your spirit, and you have to give up a life you have always known. Once you are in the club, you never get to leave. We watch from inside the "fences" at other peoples lives and wonder if they will ever have to be in the club, or if they realize how lucky they are that they aren't in this club. You wonder if they know if this club exists...You push against the fences trying to get out, wanting so badly to be back on the other side- out of the club...sometimes I want to scream to please let me out of this club, please stop the fence from crushing against me. Please let me go back to getting pregnant with Carsyn... what could I have done differently? Then I realize, that this was not my choice, it was God's will. He wanted me in the club. I don't know why, I don't know why he would want anyone in the club...to be in this club, you have to give up your child...not as willingly as God did in giving up his only son so that we could live on in eternity, but you have to say good-bye...you have to feel their last breath this side of heaven...you have to memorize every inch of their face, hands, and body in the short moments you have left with them knowing you will not see them again until you meet in Heaven one day.

This club has some amazing people in it. People that do not in any way deserve to be put through what you are put through when you "join the club". We are blessed by their friendships, understanding, and points of view.

We continue to walk through life knowing many people who know they could be the next members of this terrible club. That is just not right. Parents should be able to sleep at night and not worry if their child will be breathing when they go check on them.

We know many people who have learned from "our membership" who now hold their children that much tighter. An hour at the park now comes before dishes, or laundry, or dinner...

Valuable lessons learned from a club that has no perks, no benefits...just a chain link fence that holds you inside. Allowing you to see the life you used to have. You can stick your arms through it and reach for what want to try and grab from your previous life, but only a few small things fit through the holes to get back through the fence. It really is nothing more than a symbol of your life from here on out. Parts of your life are held together, just like the links of chain that the fence is made of, but there are now many, many holes.

1 year and 1 month ago tomorrow, Carsyn joined us on this earth for her short journey. Never in a million years did I think we would be in the club we are now...I still can't wrap my head around the fact that children and babies die. I am going to pull as many pieces of our life inside those fence holes...fact is Carsyn made the life we had before better...she made me a better person, mom, and wife. She made me more compassionate to other peoples stories, and she makes me want to make a difference. If I don't pull parts of our old life through, I will forget how she has changed me. I am so grateful to her for the impact she has made on me, and so many others.

Honestly, I hate being in this club...but there is no way out, and I need to make the most of this membership. I need to make a difference to honor Carsyn. Knowing her and being blessed to be her mom is why this membership is worth it. For my life is better knowing her for the short time I did, than not at all...

Michelle

Weston here we come..

2010-05-04T15:20:00.000-05:00

I took Lilly in this morning to her pediatrician to attempt to get her tube size up. We did manage to get from a size 8 to a 10, the 12 did not go in. ( I kind of figured that it wouldn't) So tomorrow Paul and I have to take her to Weston, a little sub-town of Wausau (about 130 miles away) to have her GI doctor, Dr. Fish, put a new tube (AMT mini non-balloon button) in and move up her size. This will need to be done with local anesthesia, which can be difficult with Lilly and all of her heart issues.

This AMT mini should be a good fit with her. I have high hopes that this will eliminate our past problems with the balloon tubes which tend to break. This is a link to her new tube that will be going in. along with some info about it. http://www.appliedmedical.net/amtmininonbal.htm. This will fit tighter to her skin, for less chance of her pulling on it. Also it works with all of the tube accessories that we have now (we don't need to learn about new ones). The ONLY down fall that we can see at this time is that if for some reason it does come out, it would mean an emergency trip to Marshfield. Non of our local hospitals will replace this (don't ask me why...it looks easy) nor can we replace it at home. If all goes well, she can have this tube for up to a year before it needs to be changed.

Please pray that all goes well tomorrow for our strong girl, and Dylan too. He has become VERY protective of his sister and cries when we leave him without her..... almost knowing that something is wrong. I am blessed to have two very passionate and caring children, and I count my blessings daily! I will fill everyone in to how we are doing and how it went soon.

Mini tube here we come

2010-05-03T11:26:00.000-05:00

I talked with Marshfield Clinic today....URG do they make me mad sometimes! Walgreen's Option Care, the place we get our medical equipment, told me about a AMT Mini Non-balloon button that they can get in next day! i looked on-line and they look BETTER than the Mic-key buttons! I am hoping that within this week it can be placed and done with. I hate her going through pain! We are not using the NG tube to feed, I am so afraid it will come out, she is on her own until we can get this done. So I don't want them (the doctors) complaining if she looses weight this week!!!

What a weekend!

2010-05-02T20:34:00.000-05:00

It happend again, for the last time that I could stand it! G tube came out.... another faulty tube (there is a pin hole, just like the last 5). By the time Lilly woke (cause she was wet and hungry) the hole was closed so much we couldn't get the mic-key button back in. I called the on-call GI doc who told us to rush to the ER. Yeah, right....with a sleeping 3 year old at 3 in the morning. Nope...not us, we knew that we needed something to keep the hole open, so my wonderful husband thought, " hmm, what about the tubing from the pump bag"! Geinius!!! It worked! we put it in and tied a knot it the other end taped it down to last us until morning. But, yes, my magical daughter pulled that one out too! By the time we noticed we both thought it was too late (but at least it was almost 8). Got the kids dressed, called Dr. Jermey (pediatrician) and headed for the ER.
Did I ever mention how much I think of our PED's doctor? Well, He came into the ER, yeah on his day off, and placed a NICU NG tube in with no issues. and recommeded getting what is called a BARD tube. It is less likely to come out..... for those "special/magical children". We should know by tomorrow when and what will happen, I just wish they would have siggested this 4 tubes ago! Lilly is taking all oral for tonight (don't wanna push it falling out again, even though we darn near duct taped it to her) Should do fine for tonight I'll keep updated for what we find.

New Pics

2010-04-21T14:17:00.000-05:00

I just wanted to post these new pictures of the kids yesterday. We all are having so much fun being outside, it has done wonders for Lilly with eating and sleeping. With Lilly's Reglan medication (for increasing her appetite) has been great for her feeds as well (she is getting about 750ccs per day)

Taking a snooze

Before

After: SHE LOVES SAND!!

Paul attempting to get Dylan's kite up

My baseball star
other than that things are still going well. I need to get Lilly in to see a dentist (her teeth cam in faster than expected) which we will do May 10th. It was fun trying to get a dentist that would take her because she is considered "high risk". I can't wait for the Parent's Day at childrens on May 22nd! I am hoping to see some old friends and meet some new ones too.

More Teeth for Lilly

2010-04-14T21:11:00.000-05:00

Well everyone we have 2 molars in and two more poking their way out! She now has three teeth on the bottom and four on top! Steak here she comes.... We have enjoyed the past few nice days in the last week. Today was 80 degrees and sunny, took the kids to the park, ate ice cream (Lilly fed most of hers to the puppy that was there) Dylan played with a girl his age.... BIG milestone for him ( he normally would rather play with older kids) and followed her around like a puppy. Lilly loved being outside and watching the kids run around... ate a lot of sand too! ( Is it a CHD thing to love sand over food? I don't kow, but she sure does.) We have a weight check on friday and a GI check next week. busy busy!
Dylan and I go into Dallas Headstart (our local head start) to get him enrolled into 3 year old pre-k. He can't stop talking about it. Yesterday we were in the car and I was telling him all that he will learn, reading, ABC's, and of of the other stuff when, with his "matter-of-fact" tone he said to me, "Yeah Momma and we PLAY!"
I count my blessing daily and pray for our friends still battling their Hypoplast fight (Dave and Gilda we love you and Ellie very much! Hold onto your faith).

We have molars!

2010-04-09T11:01:00.000-05:00

Lilly has both molars coming in! The one on the right side is almost all the way through and the left side is just popping up. It is getting harder to hold her still, she wants to be on the go...typically one year old. The therapist doesn't think it will be too much longer and she will be walking. Lilly is a little skeptical about letting go of whatever she is holding on to...but, when she isn't paying attendtion, she will stand by herself....until she realizes it. I think that she is coming down with something AGAIN. It has to be this crazy weather, one day it is 70 degrees and the next it was snowing....gotta love Wisconsin!
Our at home nurse will only be coming once a week now and weight checks are still being done every two weeks. Doctor Dietz only needs to see her every three months as well as Doctor Fish, her GI doctor. They told me to let her be a kid! Eat dirt, get dirty, maybe even eat some grass too ( I hope she wont eat bugs like Dylan use to!). Other than that everything is on the up and up.
Thankyou for all of the prayers and support that everyone has given us. We have been blessed and I know that God is not done blessing the miracles in our lives.

Happy Easter!

2010-04-05T11:31:00.000-05:00

Well we finally did it.... 14 lbs! It took us long enough but all is well. Lilly and Dylan enjoyed Easter this year and we had fun keeping the grass out of Lilly's mouth. She loves the trampoline and crawling on the grass. Her and Paul found some eggs that the bunny left for the kids. Dylan is at that age where he knows what he needs to do, which makes it all the more fun!

Here are some pictures of us enjoying the nice weather last week.

Lilly, Daddy, and Koda

Justa swingin'

Dylan jumping on Paul's Grandma's trampoline

Pual cousin's: Megan, Elizabeth, Grace,

Lexi, Lilly, and Dylan

Lilly found an Easter Egg!!

Ready for bed, devil horns and all!

I hope everyone ejoyed their Easter weekend and kissed their kids, and had fun all day!!

Awesome moves!

2010-04-01T13:47:00.000-05:00

I haven't updated for a while so I figured what the heck.... We got home from Marshfield and it took a while for Lilly to get back to normal. Dylan and I had the cough and am now completly done with it (knock on wood). Lilly had her check up last week with Dr. Forster and Dr. Dietz and she doesn't need to be seen for 3 months (besides weight checks)!! Dr. Fish, her Gastrointestanal doctor, had us go upto 4 times a day on the Metoproclam (which is her appitite medicine). It seems to be doing really well and Lilly is doing good with it. She has been eating meat up the wazoo!!! She loves meat, pork, chicken, hamburger, beef, you name the meat, she will eat it. We cut her small strips and she tears it down into small pieces.
We are enjoying the wonderful weather!! The kids and I played outside all day. Dylan and I planted trees in the yard then the three of us washed two of our trucks.....yes I said the three of us, Lilly had to play in our soapy water! Then we went for a walk and picked up the garbage along the road. Let me just say that we were all VERY tired when we crawled into bed. Koda, our puppy, has become very smart over the last few weeks. He now plays fetch...and not just any old fetch, I throw the baseball to Dylan, who hits it with the bat, Koda goes and gets it and brings it back! I really do need to move too much. The only issue we still have with him is his teething, which yeah, is still going on . I had no idea that at 13 weeks old he would still be teething.....the joys of puppies!
Lilly said Momma today (more than once) she has said it before, about a week ago, but it only happened once and she wouldn't do it again! She is on a roll with crawling, there isn no stopping her now! She pulls up and will walk around things. Oh and for the first time ever today, Lilly clapped!!! I had been trying to get her to clap for weeks and Mary (Speech and Physical Therapist) came over and Dora came on. Lilly danced during the intro and as soon as it was done, she clapped and laughed. I almost fell over laughin so hard! Mary seems to think that Lilly is no longer real behind with stuff; maybe a month or so as normal kids. I don't know because I judge it from Dylan and what he did and when. When he was almost 1 he started to walk and he already had a vocabulary of 5 words or so!? I guess I just get frustrated sometimes when I KNOW she can but she refuses to! Oh the joys of being a mom!!
As for O2's and Heart Rates, better than perfect! O2's have been 85-92% and HR has been 100-120's and slowly going down more weekly.

HELOCOPTER RIDE FOR LILLY

2010-03-20T20:03:00.000-05:00

Sorry it has been a while but now time to update over the past week or so. There is a bit to say so I will start from the top.

March 7th Paul and I took the kids to the Mall of America's Under Water Aquarium. We went with by brother and his girlfriend, and his two kids as well. We had SO much fun!! Lilly didn't say much the whole time...she watched the sharks and fish swim above us in awe. Dylan touched a crab and some other stuff. He had a blast with his cousins! Afterwards we went to my other brother's girlfriend's graduation ceramony. I forgot how boring those are!! The poor kids were out of their minds. We stayed there until they called her name and then out the door we went. Overall great day!! That night on the other hand, things went sour. Dylan, Lilly and I all were coughing and feeling crummy....which continued through the next day.

March 8th Still feeling crummy the kids and I chilled in our PJ's all day; didn't really want to do anything! That night is when the fevers hit with a ton of bricks! Lilly was coughin so bad it was making her vomit three to four times that night. Did I mention she wouldn't eat hardly anything all day either?

Tuesday the 9th Paul took off work...cause I felt REALLY GREAT and all, to help me take the kids to Lilly's GI doctor, Dr. Fish.
That went well, he put her on a new medication to "make stuff flow faster" to hopefully get her hungier. The had Dr. Forster come in to check the kids. He thought it looked like Croupe (don't think that is spelled right) and gave them each a one-time pill to help. That night again with the fevers and coughing.
Next day did some more laziness and watched cartoons. Now when Lilly ate during the day she would couch and vomit some more. All this time the night feeds are going poorly and we even dropped them down to 30ccs per hour overnight.
Thursday the 11th~ The day seemed to be going better both kids were moving around but just looked tired and was not hungery at all. With the kids' birthday party on Sunday I thought...'finally we're getting over this!!' Little did I know.....
Paul and I stuck the kids with my sister-in-law so we could go to the store for birthday stuff. When we got back she told me that Lilly was warm but she didn't give her any medicine because she didn't know how much to give her. Not a big thing until I took her temp.... 102.8 (yeah I automatically got scared). I called her cardiologist who calmly told me to take her to our local ER to make sure she wasn't dehydrated and push fluids...any fluids. I took her advice and at 11pm I was in the local ER waiting for them to tell me to take her home and give her pedialyte. By midnight they checked her out and said " She needs to be admitted she is really dehydrated!" So anyway...I am rambling...they called Spirit (our local transport team from Marshfield) and by 2AM they wisked her away by helocopter!
I rushed there in my truck and was there by 5AM. They had put her in the PICU and as I walked through the doors, I could hear her. Screamming bloody murder (they were attempting to put a catheter in to check her urine), her o2 stats were in the 60's while her Heart rate was 160's. Yeah, she was blue! They never did get that tube in and she cried herself to sleep. Everytime she woke up she screamed and again her stats went down. Finally by 10AM I was a little over tired and snapped! I told the first doctor that I could find to get in there and look at her! In which he attemped to tell me that they were waiting on blood tests. Yeah he did end up going in there to look at her and what do you know,....and full blown ear infection! Quickly they gave her an antibiotic in her IV and I earned some respect.
Friday was a blur from being so tired but here is the jist of it. They tested for RSV came back negitive and whatever else came back negitive as well. We were switched from the PICU to just a pediatric unit after they realized this wasn't anything to do with her heart. (It took until about 1PM for them to notice that!)
Everytime I left the room, Lilly screamed, everyttime a doctor or nurse came in, even just to talk to me, again she screamed! They slowly restarted feeds throughout the night until the next morning.
On Saturday, with only one small emisis over night, Lilly and I had a very restful sleep! When she woke up, she was smiling at the doctors and talking to them, I knew she was feeling better. So...I walked out to the nurses station and just happened to run in to that same doctor in the PICU and asked if we could take out the IV. He smartly replied with a "I thought you'd want to take her home". Of course I did so by 1 PM Lilly and I were out the door and on our way home.
This is just a reminder to me how hard this next surgery will be. My sweet baby girl to have to deal with all of this by age one...which is this Wednesday by the way!

Elizabeth Potter needs prayers!

2010-03-08T21:29:00.000-06:00

Lilly went to the ER tonight. Nothing major vomitting and diarrea, they are more concerned about her getting dehydrated. I am concerned though....she can't afford to loose any weight! Heart looks great and her O2 stats are high 80's to low 90's!! I am taking her in tomorrow to see her Pediatrician to get her all checked over.
Bigger news! Elizabeth Potter, who I have spoke about before, needs prayer urgently! She is holding on....so is her parents Gilda and Dave! Please send some extra prayers for them tonight!!

Nothing has changed

2010-03-03T11:22:00.000-06:00

Dylan's B-day is right around the corner! I can't believe that he will be three years old on Saturday!! I feel as though nothing has changed. I'll explain:
*He is still my baby~ sometimes I swear he cries more than Lilly. The puppy tries to play with him and he insists that he was trying to bite him.
*He is still very comforting~ I can be having a bad day and he will give me a hug and say "I love you Momma". That, and anytime Lilly is crying he is the first one there telling her it's okay.
*He is STILL NOT potty trained~ Need I say more.
*still loves anything that goes fast~ snow mobile, four-wheeler, sled behind the snow mobile and four wheeler. yeah I am waiting for a broken bone or stitches....his pediatrician thought he would get them by 2 years and still none yet. He is a brick sh*t house!!!
Last but not least still loves to hang out with Daddy and Uncle Chris~ They can always get him dirty and are always doing something fun!

But looking back I know that he is growing into the BEST big brother any girl could ever have. For example, the puppy attempted to sneak one of Lilly's plastic blocks into his crate. Dylan noticed and first punched Koda, took the toy away and yelled.."THIS IS MY WILLYS TOY AND YOU CAN"T CHEW ON IT!!!" then slammed the door to the crate closed! Oh and yes Dylan calls his sister 'willy'!

Lilly and Dylan both have Doctors appointments tomorrow morning for a 3 year physical and then a final Synergist shot of the year!!! I'll let everyone know how it goes. On a final note please continue to pray for our friends the Potter's! Ellie has had a rough year and is not out of the woods yet.

On the MOVE!

2010-02-22T21:38:00.001-06:00

Yep needless to say Lilly is moving now! about time I know.... Friday afternoon she took her first "crawl-step" if that makes sense?! Oh well that's what it was anyway. Now she will go a little ways then stop, sit up, look and what she wants to get into then another few moves and she is there!!

Koda (8 weeks) our newest member of the family

Oh we had a VERY eventful weekend!! Friday Paul, the kids and I drove 2 hours to get a puppy that I had found online! Cute little mutt too (Koda) Like on the Disney movie "Brother Bear". Yeah anyway, picked up our mutt.. LOL...got home around 8 or so then got the kids ready for bed. Paul put Lilly in her crib while I was in the kitchen and I heard an "OH SH---!" Yeah you guessed it the pulling of the tube! Paul and I got it back in but, it refused to vent! So in to our local ER I went. Paul stayed behind with Dylan. Upon arrival, I realized that I forgot a extension, so I showed the ER doc my trick on how to flush without one (he seemed to think it was VERY clever....common sense stuff to me (no tube OH well)) We found that it was placed correctly but thinks it was a faulty tube. Guess what the CLOSEST hospital with the size we needed was Milwaukee....yeah! We are suffering with a faulty tube until Walgreens gets another one here... stuff only NEEDS to go IN anyway!!

Saturday Paul and I had the day to ourselves. We thought it was necessary to drive 2 hours to the cities (With his truck.. big old CHEVY) to get a flat screen and entertainment center! WOW!!! Got lost with a GPS finally ended up in traffic by IKEA (a furniture store RIGHT next to MALL OF AMERICA) where we found a center then thought it wise to try to fit the truck in a very small parking ramp to go to Mall of America to Sears! We looked for about 20 minutes for a spot big enough with no luck and ended up parking in what seemed to be a compact car spot.....Oh well! After we got home it took 4 hours to set up and install the TV and the center!!! Fun!!! Actually it WAS nice just getting away for the day (Thanks Aunt Brandi for watching the kids!)

Finished project! YEAH US!!

Another Good, Bad, and Ugly...

2010-02-15T17:18:00.000-06:00

Better do the bad first because this good will out weigh it! Since Lilly's G-tube has been puy BACK it she has been having some minor issues....she has been uncomfortable, the site has been really red, and I can tell it hurts....which on a good note to that she is taking more orally :). Finally today I took her in, I figured that the pain would subside within a few days but we were going on a week; Lilly has an infection, nothing too severe but still. The doctor thinks that it was between the fall-out and put-in of the G-tube. Being that the stomach is not clean to begin with it really didn't help! She was put on Augmentin (an antibiotic) to help with all of the symptoms, it may even help her excema! Anyway she will be on that for the next 2 weeks.
Okay some good things! Elizabeth is doing wonderful with her new heart....so far so good! I can't even imagine the relief they feel! She is recovering nicely and with time, she will be home!
A Lilly Note: She is MOVING finally....backwards and backward circles....I don't even think she knows that she is doing it! I am hoping that by the end of the month she will at least be crawling (forward). She is getting really strong too! She can hold on to the couch and stand (until she notices she's doing it) and is starting to walk beside things, she has some balance issues still but I wont tell her that! Other than that All is well and parents of heart babies are truely blessed....EVERY ONE OF US! We never take those "little things" for granted!

GOOD NEWS FOR A HEART FAMILY

2010-02-13T22:35:00.000-06:00

For all of the heart moms and dads that see my site and have seen the prayer requests for Ellie Potter, Ellie recieved her heart around 4am this morning! Surgery went well and the heart looks beautiful so far!! The next week will be a battle weather or not the heart will be accepted. From Dave and Gilda's posts everything is looking good and her O2 stats have been 100%!!! Please send some prayers out to make sure Ellie continues to do well with her new heart. Many prayers have been answered today....mine too, first for a heart and now for a safe recovery so Miss Elizabeth Brianne can GO HOME!!!
To Gilda and Dave....and Ellie, Prayers from here and all over the globe for the strength to get through this. You have made it over a long hurdle and it may be bumpy, but you're on the home stretch!! I love you all!

G-tube troubles!

2010-02-12T10:58:00.000-06:00

Wednesday night Lilly's G-tube fell out....notice how I said fell and not came or pulled, well, there was no water in the balloon! We calmly gathered the kids and went in to a SAFE local hospital to get it put in and checked. Last time it came out they told us not to do anything with it until her Gasto doctor guy saw us....which is not unitil March, oh well so we took her and Dylan with us. It took us about an hour from fall-out to put-in but it had already started to close and he had a little trouble getting it in. It did go in though!
After the G-tube was replaced Lilly ate 2 oz within 20 minutes. She is upto 13 pounds and she is holding on to that weight. I think she is coming down with something because her and Dylan both have the squirts...so I am not figuring on her weight going up until that stops.
But we are doing well. I hope everyone has a good valentines day with all of the kissing and hugs and stuff, make sure that your kids are your Valentine too (not just your hunny)!

CHD AWARENESS WEEK!

2010-02-06T22:19:00.000-06:00

This week is both of celebration and awareness! I would love for everyone during this week to wear a red something....anything in memory of the wings earned, hearts healed, and the future hearts to come. Spread the word!! Something small or something large you decide, just know that whatever you do you are making a difference to at LEAST one person.... and if they pass the awareness on, we can change the world!

Overall, sorry for the change of subject, everything is going good here. Dylan is actually having his 1st ever sleep over. Yep it's 10 PM and their watching Thomas the Train! Oh well they're having fun! Lilly is SLOWLY gaining, but I'll take it! I have found unless I am home all day, all week, it is hard to push the feeds during the day and if I run the pump too fast at night, it comes up anyway. All-in-all...GOOD.

God bless to all of us whose children earned their wings, going through pain, those healed and future heart kids!
Continue to pray for Elizabeth, Ben, Gabbi, Caden, and (oh my I could go on all night) Let's just say all of our heart babies and kids!

Another doctors vist

2010-02-02T21:50:00.000-06:00

Well, Two doctor visits actually! Monday we went to Marshfield talk to the Cardiologist, Phycologist and Speech Therapist. All of which told us that we were doing a great job with Lilly and to keep feeding her. An ECHO and X-ray were done, which turns out everything is fine. Also Paul and I got our blood taken for research on this "doubled gene" thing that Lilly has....the results should be in by early next week! I am excited to see what they find out.
Today we had another synergist shot along with some misc. shots to continue keeping up with shots. Weight is alright but they changed her back to some Pediasure with Fiber. We are taking it SLOW this time and are shooting for a 50-50 ratio.

I had my 1st playdate with Dylan! It snowed and was about 25 degrees so I made Paul stay inside and out we went. I had so much fun! Just to hear him laughing and watching him play again. We also got some pictures of ALL of us enjoying the nice weather in the snow over the past few days.

Lilly in her NEW supportive high chair

Dylan making Lilly watch Yo Gabba Gabba

I'm ready to GO!

Dylan and Daddy

Lilly's 1st snow mobile ride....lasted 4 seconds!

The Good, the Bad, and the Ugly News!!

2010-01-26T14:29:00.000-06:00

At our stay in Marshfield the doctors did a gynetic test on Lilly. Just got a call today that she has a doubled gene that has NEVER been seen before! It may be a heart baby gene. Testing hasn't been around all that long and most HLHS babies have other problems wrong...Lilly does not....Just her heart! Paul and I will go to Marshfield to have our blood tested to see if either one of us has this. If we do not, it may be a missing link in prediagnosis. They may even name it after her if it is proven!! Pretty Cool huh!
Oh and I have been fighting with Milwaukee today! They told me NOT to follow up AT ALL with them and to use my wonderful cardiologist up here. (Who thinks I am crazy and knows nothing!) When just 3 weeks ago they told me that they were going to handle EVERYTHING because of the comunication issues between doctors and us! I feel as though we are being torn between doctors and they are all giving us different answers to our questions and blaming the other! They better figure out what is going on fast or I will find a cardiologist elsewhere and just have Milwaukee handle the surgeries!!
On another bright note, Lilly is at 5.84 kilos (12.8 pounds)!!! 13 here we come!! I am all for this Pediasure she still throws up but it really doesn't matter with all the fat it has in it!! Pray for our Potter friends (Ellie), they are having a rough time! Thank you!!

Prayers Needed Urgently!!

2010-01-26T12:37:00.000-06:00

To all who read my blog for Lilly PLEASE pray for another child! Elizabeth Potter born in Children's back on July 10, 2009. We met the Potter's (Gilda and David) going in to our second surgery stay. Young scared and trying to deal with their first child having HLHS. Elizabeth (Ellie, we call her) has had it worse than Lilly and is needing a transplant. She is currently battling sickness that makes a transplant almost impossible if a heart does come! We have become close friends with the Potter's and they need all of the prayers possible to help their little girl! Throughout the day and over the next month....PLEASE PRAY!!

All Things going UP!

2010-01-25T09:51:00.000-06:00

Since we have been home from Marshfield, Lilly is doing great! She finally fits into 6 month clothes (still needs a tie in the pants....not as much though) and is almost 13 pounds or 5.75 kilos...close enough to say 13 pounds! HUGE accomplishment! They are wanting her to gain 1/2 to a full pound a week and at first I thought was impossible, but now is a goal that seems just in reach. With all of our family and friends coaching Lilly on, she is doing it!
She has three teeth now with another one coming in on top. She will bite ANYTHING that gets within her reach.
By the time we go for a check up in Milwaukee next thursday the doctors want her to be 5.8 kilos so they can attempt to adjust her Captopril medication....We'll see how that works. I hate when they try that, with Heart medications it can be so dangerous!

Home Sweet Home!

2010-01-21T20:13:00.001-06:00

Lilly was discharged from Marshfield this afternoon..YEAH! Her chest x-ray was normal and her weight is now at 5.64 kilos (12.4 lbs) it is the most I have seen her. This Pediasure, even though some doctors speculate, has been just what she has needed as far as her PO intake and gaining weight! She has been doing anywhere from 10 to 50ccs by mouth and her throwing up, has turned into spit up....not to mention they changed her back to Prevacid.
Our hopes is that she can continue to grow while she is home! Thank you for all the prayers!!!

SHE IS NORMAL...

2010-01-18T20:33:00.001-06:00

Lilly has had a great day! She went in for her upper GI which showed that she had reflux and that was about it. Then we met with Genetic People, who wanted some blood to check for some rare diseases, but more than likely, come back normal. For her afternoon feed the doctors switched her to 50ccs every four hours and the very first feed she took 30ccs (the best in quite a while). She and I talked with a Child Psycologist who, turns out, said she is a normal active little girl and just doesn't like the taste of the formula. Finally, the last feed of the night she took the WHOLE bottle by mouth!!!!!!!! You go girl!!! The doctor had even suggested possibly going home tomorrow, but we all know how that works! They had put her on Pediasure with fiber for three reasons: 1) it is higher in fat, 2) tastes better, and 3) has the same calories (30 cal per ounce) as the formula had. Well, FIBER makes you poop and well, let me just say she has had to change clothes six times today, not to mention that she is still puking. So guess what? More than likely not coming home tomorrow! They put her on Pediasure without fiber now to see how tomorrow goes. Besides that, she is now 5.52 kilos (12 pounds 2ounces!) and going strong! As soon as we get the fiber in line, we sould be on our merry way!

Adapting to change

2010-01-17T19:59:00.001-06:00

Lilly and I are in Marshfield, and boy is it ALOT different than what I am use to!! The doctors and nurses are very nice, but I have needed to put in my two cents a few times already. She did have a beautiful hand painted room though! I guess that I just got spoild in Milwaukee and I need to remember not to have the same expectations as I did there.
The Ronald House here is smaller and very "homey" atmosphere. There are only 10 rooms and a shared bathroom (a little too much for me) but I am managing. The guests here are the same though, friendly and craving another mom to talk too! I have already met some great families....one of which I will ask for prayers for, Dominic, he is a young boy with a tumor in his brain that can not be operated on. He is doing better but a few prayers would never hurt, right!
Lilly has a bunch of things lined up for tomorrow, some of the items on our agenda are as followed: Upper GI, swallow study, ultrasound of her brain (don't ask it is weird I know!), a child psycologist, and some misc. stuff! Fun for us! I will let everyone know how she is doing when I get a chance!

Marshfield visit

2010-01-15T13:42:00.000-06:00

It is not really a visit, Lillyann was admitted this morning for "failure to thrive". In other words, she is not eating very well. The hospital here has big shoes to fill and they, so far, are doing fairly well. Even though they came to draw labs....a heel poke, and they don't carry band-aids because of latex.....OKAY! Her room is hand-painted with a fall farm theme. BEAUTIFUL....cows, tractors, even a apple stand! She has trying hard not to sleep at first but, she is finally sleeping and is causing the nurses to be on their toes.
The doctors are hopeing to only have her here for a week or so. They will be doing another upper GI and a swallow study along with misc. other things. She will be seeing a speech thrapist tomorrow.
I will update more as I know what is going on even though I think right now, nobody really knows;).

Marshfield Visit

2010-01-12T14:04:00.002-06:00

I had to take Lilly down to Marshfield yesterday for a check-up with our local Cardiologist. She didn't say much, they did an EKG and talked about her weight.....I knew that they would! She hadn't gained any weight since the Milwaukee visit but, she didn't loose any either! She is giving Lilly until Friday to at least start putting on weight or she will be admitted into Marshfield.
I feel like such a failure sometimes!! Why is she gaining weight there and not at home?!?! I know she is more active here but I am starting to think if she will EVER be able to stay home with us. We are trying to do something, anything, but it is not helping. We pump or tube the feeds we haven't been able to get her to eat much orally since the appointment, I called her pediatrician this morning because I am SO worried that she will not get the G-tube out and will need it for a long time.
The stresses of a special child is taking their tolls on me...mind, body, and soul! Oh yeah I got some pics while I was in milwaukee too!

Don't they look Happy to be here

Dawn our NP and Lilly bring in the NEW YEAR

Another Day, Another Tooth!

2010-01-07T19:53:00.000-06:00

Just wanted to let everyone know that Lilly has broke in her third tooth!! I had been waiting for it to come in and she bit me with it this morning!!! OUCH.....YEAH!!! So with that, her temper tantrums have seemed to relax a little, but I know that there is one more top and two on bottom ready and waiting! I can't wait until those front teeth are in and we can go on without whiskey and baby oriel flying all over my house (yep, whiskey still works better than the dumb orajel, but I can't be running around town giving a bottle of the stuff to her....hmmmm! LOL

We are home!

2010-01-05T13:45:00.004-06:00

They didn't do a whole lot at CHW just hooked her up and fed her. Ohhh real hard!! Lilly has been home since Sunday night, sorry I haven't posted but I do what i can! She has been a little crab since the recent CHW visit.....crab is an under statement! At least she is now gaining at home up to 5.41kg (11.9 lbs) this morning ;).
I took her in yesterday for another synergist shot which went well. Dylan also had the pleasure of going too. Found out this morning his urine test came back with a positive UTI (urinary tract infection) yeah me....YEAH him right, how many meds do they think I need in my house!!
Lilly will be seen everyother month in Milwaukee with Dr. Michele and then on the off month she will be seen here with Dr. Dietz. The doctors at CHW are concerned about her leaky tricuspid valve (click here for info) and are estimating a Fontane in Nov 2010. Is it just me or does that seem like it is right around the corner!!
Anyway I will let you know more when I do. Love you all and thankyou for the prayers!
Naomi
P.S. besides keeping your prayes sending to the Potter family, here is a pic of our friend Andy Wahl, he has been Lilly's Transport Guy since we started!!! Thanks Andy for the visit while we were there.

Lilly doesn't get the Copter, she better than that....she gets the plane!!

Dawn Nurse Practioner

Lilly at home 1st time enjoying her bath

Admitted to CHW

2010-01-02T13:19:00.003-06:00

Yes everyone, Lilly was admitted to CHW on her December 31st Appointment. Even though we had a good feeling that it may happen, I was VERY emotional the first night at the Rhonald Mc Donald House. To me it almost seemed as if the last 2 1/2 months were a dream; it never happened. Paul and I sat last night and looked up at the beautiful Christmas tree at RMH and couldn't believe that we were back.
The appointment with Dr. Michele Frommelt, Herma Heart's Cardiologist, went very well. Lilly had good head control and was meeting the milestones she had been given. The one thing that stood out ( has ALWAYS stood out) was her weight! According to their discharge records, Lilly was at 5.36 kilos and at the visit, she was 5.16....yeah I know. Oh course they played the whole "It would be in the best interests of her to stay" thing, and we agreed.
The docs here haven't been to thrilled with my ultimatum of them having through this weekend to either find out how to get her to gain weight or find something with her heart. We made it clear that if they do not find something wrong with her heart we will admit her to a local hospital. Unless they find a solution with her weight, then we'll just go home!!
Paul and I are trying to make the nost of our visit by visiting with Elie Potter's family, Gilda and Dave as well as going out with Andy Wahl, Medical transport, and his wife Kathy. Andy has been the one to pick up Lilly both times she was flighted and has needed to come in as a expert for certian reasons to her room, needless to say, we have become good friends and is a person that I can trust (right up there with Nancy Ghanayem).
lilly is driving the nurses crazy, she has been use to being up and walking or being picked on by her brother.... she does NOT want to just lie there all day. It's kinda cute!! She is already gaining weight and is upto 5.36 kilo (11.8 lbs) again. She is on our way home again!!

P.S.I just found out that little Ash Giles earned his wings after Christmas. His service is this Sunday please pass along some extra prayers to the Giles family!!

Merry Christmas and a Happy New Year!

2009-12-28T11:35:00.002-06:00

Christmas Time was a blessing for us to spend with the whole family together. With Dylan and Lilly anticipation was in the air....well, Dylan anyway. Christmas Eve we went to Paul's Grandma Baker's for supper and presents. Good food and some humorous atmosphere, as always! Needless to say all Lilly wanted to do was eat the paper ;). The Weather was terrible!!! On the way home that night a van in front of us went in the ditch, being that we had my Blazer, we couldn't pull them out, so the four of them jumped in with us. It was comical seeing the eight of us in a Blazer stuffed FULL of gifts.....but it was Christmas!
Christmas morning, Paul and I opened presents with the kids at home then went off to Paul's mother's house for Paul's Grandma Gesler's Christmas. More wonderful food and children screaming as they ran around the house with their presents.
Then from their off to my Mom and Dad's for our family's Christmas! Always eventful!! My Grandma had flown up from Oregon State for her first Christmas here (She is an AMAZING cook!!). Lilly had started running a fever and became fussy. So, more presents and we all stuffed ourselves FULL before the ride home again, to put Lilly down and calm her with all of the running we had done.
Over the weekend Paul and I unboxed all the gifts and put them away. This gave the kids a chance to play with all of the toys that they had gotten over the past few days. Lilly still had a fever and was fussy. She didn't even care to eat food?! That got me worried and the doctor was called. Nothing was done. Other than that we lounged around the house.
Today the fever is gone and being that we are going to Milwaukee New Years Eve Doctor Forster is not worried too much, he does, on the other hand, think there is a chance of her being admitted being that she is so under weight. I am scared out of my mind!!!
With the Christmas season over and the New Year fast on our toes, remembering the struggles that we have over come as well as the ones upcoming. We, as a family, have overcome some of the most dreadful things imaginable! Happy New Year to you all and God Bless

A Failed try

2009-12-22T13:08:00.000-06:00

We started the 4mL Captopril dose on Saturday and, let me be blunt, Lilly did NOT like it!!! By the evening, she was making strange noises and her arms and legs would tense up.....in the truck of all places. It scared the living daylights out of me!!! When we got home, I hooked her up to the pulse/ox and her heart rate was in the low 70's. Needless to say I called the Cardiologist and gave her a piece of my mind.
In the begining, I had my doubts about raising the dose, which I FULLY expressed, and it happened. I was SO VERY mad!
I am starting to get worried about going to Milwaukee because Lilly is so thin. I am afraid they will go "Oh I guess she will need to stay until we can figure it out!" Lilly will be getting alot of cookies and whipped cream this week, thank goodness it IS Christmas and the food is not in high demand.
I thought that the appt. was next Monday but I found out that it is next Thursday, At least I have some more time!

I know I AM blessed even with the struggles God puts on me, my daughter, and well, my whole family for that matter! It will be a hard few weeks, but being it is Christmas, maybe he can send a Christmas Miracle our way.....

The Cardiologist

2009-12-20T08:52:00.001-06:00

Friday Lilly had her Cardiologist appointment in Chippewa Falls. Dr. dietz wanted another echo because the one we tried to do last time wasn't the greatest. It was a little disturbing.....Lilly's heart function isn't the greatest, that's what they told us since CHW discharge, little did I fully understand what they ment. The right side of Lilly's heart is barely pumping! So we were informed to increase her Captopril dose to 4mL to see if that helps. Also she hadn't, according to their scales, gained even 1/2 an ounce in 6 weeks....not good. We are going to mess around with her overnight feeds to try to get her gaining weight. I have a gut feeling that when we go to Milwaukee after Christmas and she hasn't gained they will keep her there!!
Dylan is SO excited about Santa and talks about him all the time. We have started with our parties and he absoultly loves opening presents!!!
Besides all that fun stuff we are just enjoying being a family for Chritmas... I know there are others who aren't that fortunate. Eveyone please remember the true spirit of Christmas.....smile and just say Hi to someone to make their day. We are ALL blessed in one way or another.

MERRY CHRISTMAS !!

To Milwaukee We Go

2009-12-15T09:05:00.001-06:00

It's no big deal so nobody get all worked up.LOL! Lillyann's Doctors have benn asking me for a while when Lilly's check up is in Milwaukee, I just kept telling them "NEVER". But, I know that it needs to be done......so on December 28th we are headed down.
Doctor Michelle Frommelt, the Cardiologist in the Herma Heart Center, is wonderful. I know all of the nurses and the Doctors will be excited to see Lilly too. Maybe even stop to see some friends!!
Anyway, besides that, everything seem to be going well with Christmas fast approaching and time is going faster!
We actually got another 2-3 inches of snow the other night too. BURRRRR it sure is cold too, mid 20's for the high's and below zero for the low's. It makes it hard to even take Dylan outside for longer than the two minutes to jump in the truck.
Being that Christmas is around the corner it is just another time to stop and look around at all you have. Give thanks to whom needs it and be grateful. Do unto others as you want done to you and stop on the street and just say Merry Christmas to someone who looks like they are having a bad day. For one it will make them feel better and for two you will feel twice as good.

WONDERFUL WISCONSIN WEATHER!!

2009-12-07T22:59:00.000-06:00

Man doesn't winter come fast it seems like just last week it was warm enough outside to just wear a sweatshirt....Oh Wait... IT WAS. Now down to mid 20's during the day I regret taking the kids anywhere and I have to start my truck at least 15 minutes early (I hate that, I always find myself running late because of it). And on top of that it means more chance of one of us getting sick and sharing it so well. I really do love this time of year though! All the family gets together and has a good time, I just wish Christmas could be in July or even April for that matter at least I wouldn't freeze! I will never get use to the cold!
Lilly seems to be doing better! It must have been just a bug (knock on wood) but she still has a runny nose...poor thing. She is still slowly gaining weight and Dr. Forster has said to let her eat either bottle or real food. She has been loving that! Mashed Potatoes, Gerber melts, cheese sauce, although real bananas are her fav. so far!
Dylan has been crawling into her crib in the mornings at "reading her stories" :) I don't know if I should punish him or take a picture?! He is learning tht she needs her space, she now has her bubble that he CAN'T cross or else she screams bloody-murder. Being that "Chris-er-mis",as he says, is comming her is getting excited for Santa and the raindeer, even though he thinks that we should shoot them because they're deer and he loves venison! He wants a train and I keep telling him that maybe Santa will bring him one.
Me... I have started a Mary Kay so if you need any e-mail me ; ). I figure that it gives me ADULT time which I find myself craving more and more. It is amazing how much I am having just being with positive women and hey if I can make a few extra bucks.....YEAH!

Does These Doctors EVER End?!?

2009-12-05T10:06:00.000-06:00

Lilly, yesterday morning, was running a temp of 102 degrees and then again at 6am. By 8 her temp was starting to climb again so I called Megan...(Dr. Forster's nurse) and beingthat had to bring her in for another synergyst shot, she told me to bring her in.

At least Lilly had gained 12 grams this week! She still had a little fever when we got there so with the tests we went.... Blood, X-ray and urine, so far they are coming back negitive, but her White cells are up. The doctor thinks......hopes that is a bacterial infection because if we cant find a reason for the fever, it may be someting internal that they are not seeing now. I should know by this afternoon what is going on. She is still feeling crummy! She was up most of the night and is sleeping about 15 minutes at a time. I hope I canget some rest now that she IS sleeping!!

A Crazy Thanksgiving!

2009-12-02T13:17:00.001-06:00

Thanksgiving at my parents.....Holidays at my parents are always interesting! Something ALWAYS happens for example, this year the dogs got into a huge fight, my mom tried to break them up with a hard-boiled egg in her hand.... you can imagine what happened to the egg :). Then Their little dog had a puppy way too early and it ended the night on a sad note. The food.....wow I always eat way too much!! Thanks Mom and Mike for another Thanksgiving I will never forget.
Lilly was up in weight a little, 5.35kg! I know it's hardly anything but I'll take it being she hadn't gained anything since she got home!! She can sit up by herself now, it may just be for 30 seconds or so....until she realizes no one is holding her up!! She is even eating food, mashed potatoes and smashed stuffing are her favorites. Needless to say she ONLY wants food now and only takes her bottle when she is tired, so most of her daily formula is overnight now.
I started MaryKay to get me out of the house away from the kids and so I can have ADULT time which has been great. I just started but I am having fun already and the women I work with are amazing. Hey it wouldn't hurt if I made a few bucks here and there either.
Dylan is doing well, trying to get him potty trained as fast as we can. Everytime he goes potty in his diaper, he breaks out so bad that the doctor gave us some steriod cream to put on it. He is ready, just lazy! I know when he is ready he will do it w are just pushing a little harder.
My prayers continue to go out to our friends and extended family down south... we are truely blessed!

About the Doctor

2009-11-25T19:10:00.001-06:00

The appointment today went well and found that she has a ear infection coming on. They gave her some antibiotics to prevent it from getting too bad.Also they didn't like the fact that she hadn't gained any weight so up goes her calories back to 30 to see if that gets her that wonderful baby chunk that babies are suppose to have. Other than that, She has a little cold that should go away within the next few days, it hasn't gotten into her lungs....which is good, it has stayed in her nose.

I hope everyone ha a wonderful Thanksgiving weekend! I know that my family has a lot to be thankful for...to put it in a nut shell, our son Dylan, for being the best big brother that Lilly could ever have. Thankyou to CHW staff for keeping Lillyann safe especially James Tweddell, Nancy Ghanayem, the nursing staff and Therapists.

I am thankful to our family... their continued support mentally, emotionally, and finacially. Also for you, my extended family, friends, Heart families if it wasn't for you, this year would have been a lot worse.

Heart families....Ellie, Ben, Caden, Ash, Gabbie and all of the rest I didn't mention Thank you I hope you see all you can be thankful for wether in CHW or at home. Be strong and thank you!

To our soldiers, I am thankful for you too! For keping America a place of freedom and dreams that and come true... come home safe!

Another Doctor Visit

2009-11-24T21:10:00.000-06:00

Today Lillyann was droppedoff at Great-Grandma Baker's house so Dylan and I could do some shopping! (Thanks Grandma!) Lilly's Birth 2 Three Director, Amanda, signed my family up for a program called 'Warm the Children'. Warm the Childen is a great program where area businesses such as Kohls, JC Penney, Shopko, ect donate clothing for families that are either struggling or have had a rough year. A member met Dylan and I at Kohls and away we went! Little did I know that Kohls allowed $100 per child and we pretty much got new wardrobes for them....p.j's, outfits, socks and undies for Dlan (Hope he uses them soon!!) They even encouraged us to get bigger size coats and clothes for them!!! What a GREAT help... THANK YOU KOHLS!

After me and Dylan's shopping spree, I noticed Lilly was coughing more and was very irritable, concerned, I calle her at home nurse. Lourie was here after 5pm calling her doctor making sure shehad an appointment for tomorrow afternoon! Lilly is a little weasy and sounds "different" to Lourie... she is hoping that it is just a virus that Lilly ha and is not due to the formula or somethng worse.
So I will update tomorrow and let everyone know how it went!

A Weekend for Hunting!

2009-11-23T13:53:00.002-06:00

Saturday marked the gun hunting opener... and me, the first time I got my licence in 8 years! Paul and I had a sitter during the day from 5:30 am until close, which was around 5pm everynight. On Sunday about 4:30pm I shot my first deer EVER! It was only a doe, but it was MY doe... lol!! Not too bad for size either, we should get enough meat for a few months anyway. I was the only one in our family to shoot a deer opening weekend, yeah me! I will be making as much meat as I can into jerkey to send to Iraq for my brother ( that's what he said he wanted!) I will post a pic of my trophy later this week.

On another note, Lilly is doing good, still not gaining weight very quickly... she is still at 5.25kg. For almost 8months, she is really behind.... even the other heart kids! I wonder what I am not doing right that is keeping her from gaining?! She is the adverage size of a 3 month old!!!!

Other than that not too much going on just trying to maintain my sainity! I keep telling myself that I am blessed.....even when it is rough!

To all my CHW families hang in there and stay tough! To my brother Daniel, the jerkey is coming bro.... be safe and come home soon!

Time well spent...

2009-11-19T22:28:00.003-06:00

Over the last month that Lilly has been home I have been thinking of a way to spread awareness of HLHS. So, I've spent the last few days on this video... the buffering is a little off but it is cute all the same! I hope that everyone likes it, some of the photos are a tiny bit graphic, but not too bad ( I don't think.....but then again look what we have seen right.... LOL!)
Please continue to pray for the CHW kids! Gabrielle may just be going "H" soon.... pray for that to stick as well! Also Ben Meert's BEN efit is coming up on the 6th in Green Bay please support their family as well. You can click on his link from here to learn more about it!!

God Bless! Because I truely am!!

If the movie link doesn't work click here
http://picasaweb.google.com/geslerfamily/Movies

A Month At Home!

2009-11-17T21:30:00.002-06:00

Lillyann has been home a month now! WOW a whole 31 days with no real complications!!! I truely AM blessed!
Anyway, sorry just realized it....Lilly's nurse Lori came and listened to her lungs, checked weight so on and so forth. She was upin her weight and her O2 sats are in the mid to high 80's, heart rate is good... about 142 beats per minute, adverage for her. Lori is a little concerned about her lungs. With her having this cold there is mucus that you can hear, but after she coughs, it goes away. Lori said that we need to keep a very close watch on this and to never lie her flat on her back for long periods of time to prevent the fluid from getting to comfortable around her heart or lungs. She felt nessasary to call her pediatriction so he knows incase things do take turn for the worse.
Being that all of us are sick, it is almost a reality check that it may be the kilo coming back... and we know too well that if it does we will be back in Milwaukee and a surgical operation will be preformed. BUT staying positive is a MUST!
To all of my extended family Prayers are coming from 'UP NORTH' to you! Everyone else God Bless and thank you.

November 17th 2009

2009-11-17T11:02:00.001-06:00

Yesterday we started her Goodstart formula and she seems to take it better and it doesn't need to be so hot. So farshe hasn't taken more than she has from the Portagen/Progestamil... which is strange being that the Goodstart should taste better overall?! Lilly is still taking around 30ccs an hour, which it turn, she gets her 90ccs every three :) If that is the way she wants to do it,.... fine with me!

Also yesterday I went down to try to get some assistance with our heating bill.... it went up 100 dollars this last month. We actually qualify for some federal which will help us out a bit this winter! God knows we could all use as much help as we can this season! i went with my mother to the courthouse and ten we did some mother/daughter bonding which was nice....we don't get that too often lately with all our stuff going on. We even did a Mary Kay makeover!!! We had so much fun!!! Thanks Mom!

Today Lilly's nurse is coming over and I am a little concerned with what she will say about Lilly's cold. Lilly hasn't ran a fever at all but she has a terrible cough and runny nose. I listened to her lungs and they sounded fine to me I just hope that they sound fine to her also. I would recommend a stethiscope to anyone who has a child with "concern"!! It has been a comfort for me and if I think shesounds different, I take her in!!!
Anyway,I got or family pictures back and they will be going out within the next two weeks or so expect an early christmas card from me because they will have the pictures in them as well....less postage yeah I'm a little cheap LOL!

I am truely blessed and everyday I thank all of you for the prayers that hav came our way! Please continue to pray for Ellie, Gabby and Ash and for their parents to continue to stay strong!!

Friday the 13th!!!?!?!

2009-11-13T21:26:00.000-06:00

Well, Lilly's appointment went well even though it took 3 hours! Lilly started to get tired and did not want to cooperate with the ECHO or the EKG! We didn't even attempt the EKG because she was so upset. Dr. Dietz, the cardiologist, said that her heart function wasn't the greatest but she wasn't too worried. Also she hadn't retained any more fluid building up and we are going to me extra cautious over the next three weeks because she will start "normal" formula on the 16th!

I think that the whole family is coming down with a cold! Lilly, Dylan, and I are stuffed up and sore throat. Paul actually said he was feeling kinda lousy too. I hope that it turns out to be nothing and maybe it is just the dry air... a few more days and we will feel fine!

On another family note, Paul went up north hunting for the weekend leaving me with the kids alone.... it IS the last bow hunting weekend so I figured.... 'what will it hurt'! Today on the first evening hunt, Paul shot a Doe!! Meat for My Freezer!!! It is actually the first deer this year out of his family, let me just say that he is VERY excited and called me before the hunt was over! GO HUNNY!!

I am VERY blessed and please pray for the extended family in Milwaukee still struggling!

A Cardiologist check-up

2009-11-12T10:08:00.000-06:00

This afternoon Lilly has check-up with her cardiologist. She needs an ECHO and a possible EKG to check her heart funtion, it is only routine,but with her heart not being a great as they would have liked,they want to be safe. I don't think she is feeling very well today... she is not sleeping well and hs been unusually fussy.
As for my home.... back to normal! Also the PT/Speech Therapist is coming along with her Hme Nurse.What a BIG day jammed packedfull of fun and excitment!!!!
The Harper kids left this morning, they were SO happy to see their Dad and knowing that they were going hme to their home wih their toys! I was happy to have them, BUT it is nice to have my home back!!
I will update with what the doctor says...

Another Day In The Eyes of a Heart Mom

2009-11-10T20:57:00.000-06:00

Another day has come and gone. Lilly's nurse came out and was a little skeptical about Lilly's weight being down....again! She is hoping that she will eventually get over the 6 kilo mark within the next month. I don't know what to think really.... she eats, poops, and sleeps, well, I guess she does play more since she has been home; a big brother will do that for you! LOL!!
Amanda, our birth2three administrator came over to check on her progress. It was hard to focus with the other kids yelling and playing over-head "literally", but we got it done. She was happy with what she has accompished and is not pushing her too hard to go forward until she is ready.... until I am too!
I took Dylan to the doctors office today and while we were there I saw a baby about Lilly's age. I smiled at her mother knowing that her child will more than likely never know the emotions that I had and sometimes, like then, still do! Seeing the little girl crawling around on the floor, pulling herself up onto the chairs, I felt sad. Sad that Lilly is behind and that MY BABY, MINE had to go through all that she has and more to come that she doesn't even realize. Then the anger hit.... not only about Lilly, but all of the other kids all over that go through tough ordeals in their lives and realized that it is not fair! Finally a sense of belief, hope and love, that my child is a miracle!! She was sent to my life not to anyone else, just me!
Please continue to pray for Ellie and Gabby, Ash to keep fighting to get well and stong. And of course Caden to keep up the growing and continue to get strong and smile. I Love you all and thankyou!!

A Picture Made A Memory Cherished!

2009-11-06T17:23:00.000-06:00

Pictures are done! Well, we got them taken today and we got the cd so her are a few cute ones of us and the kids. They actually did very well for taking two hours... and being hungery. Lilly had her synergist shot as well as a Rogam shot, slowly we are getting her caught up! Dylan also hadto get X-rays of his leg becuase he did "something" to it, so his leg welted u ad it was black and blue today. Somehow it got infected...whatever he did... and he needed to be put on an antibiotic to clear it up. They also increased her volumes to 90 or 3 ounces, she still isn't gaining enough weight!

Om another important note, we have been home exactly three weeks today with no extreme issues!! It has been another good few dys and I still know God is blessing our house!

Please send love to our extended families in Milwaukee trying to put their families back together again!! We LOVE YOU ALL!

Talk about puting your foot in your mouth!

He's NOT camera shy!! My ladies man, Dylan

A Little R&R.....Finally!

2009-11-05T19:43:00.002-06:00

Lilly had both her Physical Therapist and her Home Nurse visits today, both of whih went well. She is taking more food by mouth and can hold her own bottle most of the time! Her O2 stats were 92 this morning and is starting to gain more weight!! I think the reason she is sleeping better is because she IS taking more by mouth and is feeling full.
Tomorrow we are going to get family pictures done, a big moment ib this family because after a long 7 months she is good to go out in public!! I am getting a CD so I can update pics sooner!!
I am still blessed!
A SPECIAL PRAYER PLEASE SEND TO ELIZABETH POTTER, anoth Hypoplast baby girl! AND HER FAMILY WHO IS HAVING A HARD ROAD AND IS GOING TO NEED A HEART TRANSPLANT!!!!
follow her @ this link http://www.elizabethbrianne.com/
Please continue to pray for our all families in Milwaukee, and to them knw our hearts are there with you!

Good Monday

2009-11-02T19:47:00.002-06:00

Lilly has had a good few days, she is taking more by mouth and wanting the bottle (a VERY positive thing!) and she is even rolling over all the way! It looks as if she is finally heading in the right direction. We need to go to the doctor sometime this week to get her cynergist (not sure if I spelled that right) shot to prevent RSV (a common lung disease common with preemies and "critical" kids like Lilly). She will need this every month through the flu season until she is two o three.
As for the household, we picked up two more kids for the next week. The Harper's, D.J and B.B, are staying here. It has increased the stress... I know it will die down after a couple days,but I sure love having them....that and they keep Dylan playing around and having fun with more kids to play with... they all sleep good at night lol!!
Today is a great day and I am VERY blessed!!

Happy Halloween!

2009-10-31T21:07:00.003-05:00

Hi everyone, Lilly is doing wonderful!! She is taking about 60% of her day-time feeds by mouth. We are still allowing her to get 360cc's overnight just to try to pack on the pounds! She has been really gassy lately and we are venting and using the Mylicon drops to help.... which seems to work. Sleeping has been a issue.... not staying asleep, just falling asleep! Paul and I have tried everything we can think of and she still takes about an hour before she is out for the night.

I dressed Lilly up for Halloween (NO she did NOT go out) I just thought it would be nice because Dylan and I went out while Paul did some quality bonding with his daughter.

Doesn't she look happy with pigtails!
Mikey (sister-in-laws brother).... Brandi..... Dylan (the clown)... and Me (Vampire Bride)

OOOO SCARY HUH!!

It was nice to spend some time alone with Dylan just having fun! We only went out for three hours (which is mostly including the annual Party at the High School) but by he time we got home he was OUT! Of course he was thinking he was eating ALL the candy in one night... wasn't happening..... oh well still had fun. Please continue to pray for our extended CHW family and thank you for all the support.

Rainny Winter Dys!

2009-10-29T14:53:00.003-05:00

How come every time it is crummy out I need to do something with Lilly?!! Lilly went in to the doctor for a rash, which turned out to be eczema, and cam out with two shots. Slowly she is getting immunized!!YEAH! She is under weight so we are going to up her volume to 75 ccs per feed (2.5 oz ) to get her weight up.
She is very gassy and Ifind myself venting her g-tube more often now than I did last week. Her doc told me to try Mylicon drops. Well see! Itherweis, things are going good! She can't get H1N1 aain this year!! still cute

Awesome Job for Lilly

2009-10-28T13:56:00.002-05:00

Lilly gained weight!! Only 10grams hey, it's a start. I started yesterday doing a feed as she wants thing and whatever she doesn't take by mouth put over the pump. doing it this way gets about one extra feed in.... at this point....whatever keeps us away from CHW (no offence).
Lilly is doing better with her head control as well as eating her feet... :) She still refuses tummy time, but the therapist is coming out tomorrow to check things out.

It starts again!

2009-10-27T14:16:00.004-05:00

Lilly's home health nurse, Lori, came out today and got a weight on her.... she is down to 5.34 kilos (11.7 lbs) and they are debating if we should increase her calories or her volume. I also expained that she has been more irritable, Lori doesn't know if it is the G-tube or her teething.
Dylan is drivng us up the walls "helping" us. I know that is what he intends to do, but he is making more work for me. Paul finally is feeling better and just hs a cough now.

Tankyou for the support...
Naomi

The weekend's over!!

2009-10-26T11:02:00.002-05:00

We ha a exciting weekend! While my sister-in-law took he kids,I had the idea that I wanted to rode the horse..... until in got spooked and I went flying about 30 feet into the corn field and messed up my back! Then my brother, David, his two kids and girlfriend came over to help put tarps on our garage and do a little drinking. Andrea, my brother's girlfriend, got Lilly laughing for around 1/2 hour..... it was the cutest thing ever.
Sunday we had a family birthday and everyone wanted to see Lilly. Everyone was so happy that she was home and doing well.....until we got home that night! It was late so I was laying Lilly down and hooking her up to her feed pump that when I laid her down, her extension got stuck on my shirt and out it came. She only cried about a minute and then was laughing and talking as we drove to our local hospital. They managed to get it back in and talked a doctor at another clinic to do a contrast on her. All they did was put some barium though her G-tube to make sure it was placed right. We didn't get home until 1am this morning!! Other than that, everything is going well and the family is doing well

Winter is here!!

2009-10-24T11:02:00.005-05:00

more interested in the toys than the pumpkin

doesn't he look so excited!

" What's in there?!?!"

Today we let my sister-in-law take the kids to her parents for a while! Oh my word, I am so nervous! I know I shouldn't be because she is a nurse and so is her mom, I still am! I know she will be fine.

It snowed here all day yesterday and while Lilly was sleeping, Dylan ad I were able to go and play! It was alot of fun being able to throw snowballs at eachother and build a little snow man. Then Paul took him on the four-wheeler to play around.... they both came back soaked!! We also carved a pumpkin last night, it wasn't very good but we still had fun! It has been nice to actually do things with the kids together this week.

The whole house is doing much better health wise! Paul is still a little sick....coughing is about it.

I am SO thankful that we got her home before this stuff started!

To the cardiologist!

2009-10-23T16:09:00.004-05:00

Lilly had a cardiologist appointment this morning and was going to get some immunizations... that didn't happen!
We got there and Dr. Dietz looked at her and said everything looked wonderful!! Good news to us. But then came the nurse... when we took her in on Tuesday, the did a blood culture, and it came back today! It seems that Lilly had H1N1, that is why she was so sick on Tuesday, so she couldn't get any shots this time. Dr. Dietz wants us to mix the formula at 24 cal instead of 27 just for a week because of the H1N1, she doesn't want to push her tummy. The 27 cal seems to give her diarrhea....we don't need her getting dehydrated too.
Being that Lilly had H1N1, means that the rest of the family more than likely has it too! Paul has been feeling crummy the pas few days and Dylan is acting fussy lately too. I, on the other hand feel just fine and dandy..... knock on wood... we'll see how the next few days go!

At least she took it well, just a little fussy and a fever, no hospital this time!!

First week home!

2009-10-22T09:30:00.002-05:00

Yesterday Lillyann was just not acting herself! She was running a low grade fever of 100.5 and was throwing up all morning. We called her pediatrician and they got us in quick, ran blood tests, did an x-ray and gave her he once over. Blood test showed her white count was up a smudge, everything else was normal and possibly has a viral thing.Talk about a relief, I thought for a minute that we were headed back to Milwaukee!!
Paul, Dylan and I got our H1N1 vaccine..... the nasal one smells bad!!! Anyway this morning, Lilly is back to normal and very talkative!! She wants to be the center of attention! Dylan and I are going to attempt to do something constructive......if she'll let us!! I sure did miss all of this when we were in Milwaukee!!

She's Home

2009-10-19T18:56:00.003-05:00

After 102 days in CHW Lilly was finally sent home Friday! It has been an interesting time home just trying to get organized and back to our normal routine. But, I think we are starting t move forward. Dylan is getting used to having to share our attention with his younger sister and is "helping" out with everything from cleaning to throwing away diapers. I thank God every day for sending me two WONDERFUL children.
Paul seems to be adjusting well to having a full house again.... so am I for that matter! Lilly goes in Tuesday to start getting her immunizations and then Friday she will see her cardiologist up here. We are planning on her seeing a cardiologist in Milwaukee, but, we didn't want to go back down so soon!
Mentally, Lilly is ahead of her age with smarts... but, when it comes to milestones that include using her core, she is behind.. she will get there I have no doubts!

The start of another chapter!

2009-10-13T14:16:00.002-05:00

Today I am starting this blog because our caringbridge site can only contain so much, with every day the space I have there gets smaller! Here I hope to include not only Lilly's triumphs and struggles, but the entire families as well.
Let me start off with what happened yesterday.... yes, I will be writing on caringbridge for a while longer but will fully transfer here!
Oh yeah, back on the topic, I received a call that Lilly was going in for another upper GI....which was done yesterday at two PM. They found out that Lilly may have a ulcer which is causing these eating issues. The doctors are not sure yet if it is true or not because she is not in too much pain so they will wait and see.