Happy Halloween!

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!

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

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!

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!!

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!!

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!

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!

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

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!

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.