About the Doctor

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

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!

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...

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!

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

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!!!?!?!

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

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

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!

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!

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

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!!