Update on Doctor's appointment

So we had M's appointment yesterday. As you probably saw on my FB status already, she gained some weight! YAY!!!!! I was extremely excited and happy, but once my doctor did the daily calculation, I was disappointed and discouraged to see that she still isn't gaining enough. But I'm just going to focus on the fact that she actually gained some weight this week! That's at least a step in the right direction. 

I sat and talked with my doctor for almost an hour about all that has been going on and I out right asked her if she was concerned about M and if so, how concerned?  She responded by telling me that she didn't think Maddy had any extremely serious disease, but she is concerned that M is on the highest calorie diet that she can be on and still isn't gaining much weight and hasn't grown length wise at all. (since she was 6 weeks old anyway) So she has ordered a second opinion for us. She has (without me asking for it:)) called another doctor and asked her to come and see us next week to go over M's whole story and see what she has to say. She said it may involve doing a bunch of the tests that have been done over again, and she may order new tests too. But she said to go with whatever she requests and see where she goes with this. I was THRILLED when she told me this. I was thinking of going for a second opinion, but I'm so very happy that I don't have to, and that my doctor has put this all together for me already!

Once we've seen her, my doctor said the next steps she wants to take are going back to have another cardiology consult done, and also getting a neurological consult done. I also have to call the nutritionist today to give her M's latest weight numbers and see what she wants done. I'm sure all it will involve is keep doing what I'm doing. I'm 99.9% sure she won't order a feeding tube (which is the next step) after only being on this highest calorie diet for one week.

The other thing my doctor told me is that so far developmentally she is on track, and that the fat she does have, looks like "healthy fat". I'm not really sure what that means, but I take it as a good thing. :) To me she looks a whole lot better this week, so I hope and pray she just continues on this upward swing.

Doctor's Appointment

Maddy has an appointment tomorrow. If you are praying for us, please pray that we would see at least the minimum weight gain that she needs, as well as some growth in her length. (That has not changed since she was 6 weeks old)  Please also pray that I would have the right words to speak to the doctor tomorrow about my continuing concerns about her and her lack of interest in food and her white and blue spells.

Christmas Day and Boxing Day

We had a really good Christmas celebrating Maddy's first one! :) She spent Christmas Day sleeping most of the day away. She still has these crazy 5-7 hour naps. Anyway, she also had two incidences where she lost all her colour again and her feet turned blue this time.  Around her eyes and mouth also turn blue. It always seems to happen when she's sleeping. I woke her up because she was doing it again, and it FREAKS ME OUT to see her loose all her colour like that in her sleep and see her turning blue. I want to make sure I can rouse her and that I can get her to be alert. Yesterday I could wake her fairly easily, so that was good. Sometimes it's not as easy. DEFINITELY something to talk to the doctor about on Thursday.

Today she has been fairly cranky and hasn't slept much. As soon as she was put down, she'd start screaming. She seemed quite uncomfortable today. Gas or something. Funny how when you question her every move, even completely normal things like gas start to concern me!

Anyway, things have not changed a whole lot with her. She still doesn't eat a whole lot, and we're still waiting for things like having to adjust her car seat for the first time since she was born, or having to move into the tub for baths, because she is too big for the infant tub, or moving out of newborn and 0-3 month outfits, or moving up a diaper size.  hhhmmm....all things I completely didn't even think about with my two other children.

Christmas Eve

M has been really off today again. Sleeping A LOT again, which also means, not eating much again.  I'm keeping a little daily journal that I am going to show the doctor at my weekly visits, just so I don't forget anything.

Dec.23

M did really good with her feeding today! I'm so proud of her!!! The down side is that her poops have been grey a few more times again. Not sure what's going on there. Definitely something to mention to the doctor on Thursday. But on another good note, she hasn't had any more episodes where she looses her colour and turns blue. So that's good. Here's hoping we can stay episode free through Christmas (because those episodes warrant a trip to emerg) and that she can continue eating as well as she is.

Day 2 of being home

We've been home for 2 full days now. Both very exhausting days.  Yesterday M ate like a champ! I was so proud of her. Today, she's decided that two bottles in 24 hours is enough for her. She also does not want to be put down. So THANKFULLY my Mom is out here and staying with us to help us out, and tomorrow is Mark's last day for two full weeks! YAY!!!!!

So I'm just continuing to be my anal Momma self and keeping a very close eye on her.  She has another weigh in, right after Christmas, and there I have to let them know if she is eating her daily requirements. (She did yesterday, and today she didn't).  I'm not sure if I have mentioned this on here yet, but we have been given a number of ml's that she needs to eat daily to say she is maintaining her hydration, never mind enough to gain weight. So she has to drink 560ml's daily. 

I'm hoping that I will be able to relax enough to enjoy the season and not let this completely run me right over and miss out on enjoying her first Christmas.

Tuesday Night

Well much to my dismay, we are home.  Not AT ALL what I want, but I don't have much choice. I voiced my concerns time, and time, and time again today to pretty much anyone who had ears and was anywhere close to me.

We do have a few answers in that they have ruled things out. But we still don't have an answer either. I still have major concerns. Maddy seems to be a borderline kid. She JUST pees enough to not make them concerned, she JUST eats enough (and most of the time doesn't) to keep them somewhat happy, her blood sugar is just a few points higher then the "low" level, and the one thing she doesn't do enough of is gain weight.

So she is right on the line between doing even more testing, and just waiting to see what happens. So for now, we have to start doing weekly weigh ins again (starting tomorrow), I have to keep track of how much she eats in a day. Down to the very last drop, and I need to pay attention to her diapers and how wet they are.  We are also being sent to another specialist, but I don't know when. It's a gastro doc. We're also going back to the cardiologist, and they may get us to start checking her blood sugars regularly. But that we aren't sure yet about.


So anyway that is where we are at.  I'm very overwhelmed and frustrated. I'll have a better idea of how we're moving forward tomorrow after we see her ped.

I'll continue to update as we see doctors and decide how to move forward.

Tuesday morning

Yesterday (Monday) was a rough day. Lots of tests and then she ended off the day with having another episode of loosing all her colour and her hands turnin blueish. She was still completely alert and happy. The nurse and my sister were in here with me and her vitals all looked fine. They sent her for another EKG and that also looked okay. So thats another mystery. The doctors just really don't have a clue what to do with her. I have a very strong feeling we'll be sent home today wit no answers. What a frustrating feeling to go home with the doctors saying "we know there is something wrong but we don't know what" So today I wait to talk to them once again. So far they have decided against doing a scope but that might change yet. It more then likely won't happen while we're here. There has also been talk of sending her home with a feeding tube. So we'll see where that discussion goes. Still lots of questions in my mind but at the same time I want to go home for Christmas. I'm just trying really hard not to let that take over. If staying for Christmas means answers then I'm willin to do it.

So far all we know is that she has reflux. Nothing else has been found. Will update when I know the next steps. She handled the barium test very well as well as the EEG from what I was told. I was not allowed to be with her for that one. We're now waiting to see if we're doing the scope as an in patient or out patient procedure.

Sunday evening

Well today worked out much better then I thought it would. First M was taken off the heart monitors and we got moved out of the monitor room and into our own room. Then after more crappy feeds they switched her back to her normal formula again. Tomorrow is the big test day. They are doing a barium scan where they will have a look down her throat and tummy while she eats. I really really want this to be problem. Or I guess maybe I just want an answer to all of this so I'm really hoping we get some answers this week other then "I don't know!" So if you are praying for us please pray that the doctor's find an answer tomorrow so we don't have to start from scratch again! I will update when I can. The appointment for the test is at 9:30am.

Saturday night

Today has been quite a frustrating day. It started off with Maddy loosing a bit of weight. Not a lot but it was a loss none the less. So I guess maybe this new formula isn't working as good as I thought it would. But we'll see what the dietician says on Monday. Not all that much happened today so this update is short. She is happy as can be so I'm very thankful for that. It would be a lot tougher if she was always miserable.

Saturday morning

So as of this morning she is very happy and looking herself! They tested her for a milk allergy via blood work. So we'll see what happens with that. We may also be possibly moved out of this monitored room but again that is a "wait and see" situation.

Update as of Friday night.

I have a lot of people looking for updates on triple M so I will try to keep this updated so I don't have to send the same info to 20 different people. Anyway here is the latest as of Friday night: They were thinking M may have had an allergy to milk so they switched her to a hypoallergenic formula called nutramigen. She took to it fairly well and put on more weight in a day then she has yet. She also was eating it a little better then she had been and it really changed her poop to a better looking colour and not NEARLY as smelly! Anyway even though she seems to be doing better on this stuff they dont't think she has an allergy. They are going to keep her on this formula because for some reason she is tolerating it better then the other stuff. So hopefully this will somewhat address her eating and gaining issues. Time will only tell. I guess. She is still also on a .91 kcal diet. So I'm not sure how long they will keep her on that. So that is another question I have yet. As for the "episode" she had that brought us in here (she was white as a ghost, completely lethargic, and her lips were blue), they are doing some more testing. They are sending her for an EEG to see of she is possibly having seizures. They are also sending her for a barium swallow x-ray to see if she may have been born with an abnormality where her wind pipe and food pipe are connected. If that would be the case she would need surgery to correct that. They are also potentially sending her for a surgical procedure where they knock her out and put a scope down her throat to look for any abnormalities there. I should find out Monday of they are going to do that. Another thing they are wanting to do this week is get a proper echocardiogram done. She's had one done before but because she moved around so much they couldn't get the best look. So they would like a closer look. Now this will also involve sedating her so I'm not sure when they can do that. So I don't think we'll know much more over the weekend. Looks like we are going tohave to wait till Monday f