Hit a Brick wall?!

Well.. Last Thursday he was weighed and lost a couple more onces. WHY !? I honestly feel like I'm doing everything I can do and he still is a tooth pick! Will he ever be a big boy like Tripp?! I don't know and it doesn't matter Fox is Fox and Tripp is Tripp. But no one can convince me that a baby losing weight is normal ! The doctors do not think this is normal and are very concerned. Actually his new Doc is amazing and calls me on a daily bases. Since we agreed to deal with his issues out patient she wants to make sure he's okay:) What I don't need to hear is a friends of friends of this girls co workers daughter who is such weight etc etc..These situations aren't mine, he wasn't small he was freaking born 8 lb as 36 weeks! And hasn't gained a single oz in 8 weeks! And has lost weight, he's not "small for his age" he's not thriving... This kills me. I feel like I'm failing him.
Tonight when I was changing Fox, Tripp and Everly were pointing at his scar saying "boo boo" and "oh no" like usual. Then Tripp ( newly in love with numbers) started counting Fox's ribs. My baby:(
Well his next weigh in is Thursday but he's been "off" and not eating the 33-35 oz they need him too. I don't think he has lost much more though because I think his body has platoed. He is now on another hyperhallogenic formula but fortified to 24 kal. I'm basically writing this week off. Fingers and toes crossed he doesn't really lose tho:(
My posts are so depressing lately but this is our reality. This is always in the back of my mind. However amazingly Fox is right on track developmently and is even standing up leaning / holding on ( if u put him there, he can't pull him self up,obv.) We fill our days will swimming lessons, Sunday breakfasts with best friends, park trips, choo choo trains, crafts, visits to the toddler gym, shopping trips, lots of walks etc... Everything is perfect expect my youngest sons health.

Another hospital stay:(

After taking the kids to Star gym on weds I got a call from the cardio fellow. She was calling to follow up with me about Fox and his next apt with a new pedi for his weight loss. After she agreed 3 weeks was way to long to wait. She said she was gonna consult with his actual card dr. Laheed and see what she felt. Well that's when I got the call despite seeing him on the Monday and not admitting him they changed their minds and felt like he needed to be admitted that day! After telling them I wasn't on board since we haven't tried anything at home yet. His card nurse Susan was the one who convinced me to take my sweet boy in. We are home now but while in hospital he lost 100 g ( that's 4oz ) they tried him put on milk based high kal formula. He is normally on soy based. Anyways he took 4 oz and was then puking and screaming bloody murder. He screamed in pain for over 2 hours we tried a heat pad and eventually had to give him some pain meds. I felt like I failed him:( I knew this would happen ( not to that extend ) but they talked me in to it and said he probobally doesn't have a really allergy.....WRONG he does in deed have one. In fact now they are saying its severe enough that he shouldn't he on anything but hypohallogenic formula. Not that I'm complaining but this kids is the most expensive kid ever;) so in short the Doctor doesn't know what's going on with him yet but doesn't want to do extensive testing if he just needs more cals. So she came up with a number of 40 oz . That's a lot. I'm hoping this works but as I'm feeding him this at home I can already telling its not sustainable. He eats all the time to get 40 in 24 hr so he's not always hungry. I dont understand why not fortified feeds yet. Ugh frustrated. I'm taking Fox in on thursday to see her for a weigh in. There is NO WAY he's lost weight eating this much... I can't wait to see how much he weighs.... It's killing me. FINGERS CROSSED!
Oh a happy note we still had s great Easter. The "Easter bunny" brought Tripp and Everly Rose a place house along with the tradition goodies.
I love my Family:)
Oh and I must mention how awesome my Mom is for ALWAYS dropping her life everytime FOX is in the hospital to help with the kids while Brandon's working and I'm with Fox.

Cardiologist puts foot down!

So the pedi appointment went.... really no where. I do however understand more of where he is coming from. He feels like it is heart related, and that the Cards have access to all the specialist that he needs to see. But for him to order those things it could take months. Here is where I still have a problem....Is he incapable of picking the phone up or faxing something to the cardiologists and them working as a team? seriously ? Why do I even take him to this guy? he does shit. Any concerns that arise he says take him to the card...even when its his job to do something. UGH!
He reluctantly made a referral to a GI Doctor but said it will take months to get in. When we all left and got in the car I decided I was sticking to my goal I had set yesterday, Getting Fox the appropriate care he needs. So I called his Cardiology nurse (she is the best ) She had just talked to Fox's Cardiologist and told her everything that is going on and the back and forth from Doctors. She is referring him to a new pedi and is seeing him on Monday. She also is setting up Fox with a nutritionist. So I feel better that things are gonna start happening They did tell me that when they weigh him on Monday if he hasn't gained a single oz he will be admitted. I'm crossing my fingers that I can get him to gain at least a tad if not more!
On a lovely side note. I am amazed everyday at how sweet my kids are! Last night I put Fox down on the play mat and Every followed suit and then Tripp, they were all giggling. I'm so in love<3

long over due

I kinda bailed on blogging, I could blame it on having 3 kids 2.5 and under being busy and I have no time to myself...but that's not really true. I've  just not in mood because Fox's health is so up and down.
First off I want to say that being a mom of 3 is amazing! Tripp and Everly-Rose and the best older siblings and we fill are days with outings, crafts, gym time, and baking/cooking. Tripp still calls Fox "Boo Boo" due to his scar on his chest. He does say Fox.. but it sounds exactly like F*$%, so I'm not really pushing that ;)
I'm not going to go into grave detail in about the last few months because that would be the longest blog ever. In short Fox has been in and out of the hospital since being home. He had his genetic testing done for Cystic Fibrosis (since he tested positive in the newborn screening for possibly having it) and he doesn't. Major relief!
He has gone from sleeping 36 hrs straight to having seizures and endless amounts of testing. Just when we got all that sorted, he is peeing buckets! and lost almost 1/2 a kilo in 4 days (4 weeks ago) and has since gained none of it back. I don't want to point anyone out so I'll just say. I'm feeling like Fox is being Bounced from Doc to Doc. The Cardio is very concerned, about the weight loss issue and says it needs to be handled by the pedi. But the Pedi think it should be handled by the card. See..? it's like they are playing a game of ping pong with my sons health. I don't care who gets the ball rolling but for F sake its be 4 weeks with NO weight gain. I'm not waiting around any longer and watching him lose weight. What kind of mother would I be? I'm taking all 3 kids to the pedi tomorrow and I'm putting my foot down. Wish me luck?
Being a Mom of 2 healthy children, I feel so blessed. I feel so blessed that Fox is with us and 4 months old now. Now my goal is to get him healthy.