Tuesday, January 26, 2010

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

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!!

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!!

Monday, January 25, 2010

All Things going UP!

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!

Thursday, January 21, 2010

Home Sweet Home!

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!!!

Monday, January 18, 2010

SHE IS NORMAL...

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!

Sunday, January 17, 2010

Adapting to change

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!

Friday, January 15, 2010

Marshfield visit

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;).

Tuesday, January 12, 2010

Marshfield Visit

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

Thursday, January 7, 2010

Another Day, Another Tooth!

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

Tuesday, January 5, 2010

We are home!

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

Saturday, January 2, 2010

Admitted to CHW

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!!