Saturday, January 11, 2014

Maddie has turned into such a heavy sleeper... She doesn't sleep much during the day but I am pretty sure she would sleep all night if she was allowed to... She had extra blood work done this morning, other than her usual electrolytes test.. I forgot the medical term but it's to check to see if she is retaining extra fluid... I have a feeling that it will say she will because they did it right after her 6am feed... They have to send it to an outside hospital to test it but we should know by Monday, as well as the cystinosis test... Other than that, it's been a calm, rainy, lazy day... She was 10 pounds this morning ( 6 ounce gain), but then we lost 4 ounces this evening (9.12)... Her urine output was 9, and with stool makes it 12... So we are almost normal... I just don't know that her pooping so much is normal but they haven't said anything...we are gettin so homesick, and it's hard that I don't get to see Bryson this weekend... Oh and before I forget, cell service is terrible here and my phone doesn't always ring, but our room phone number is 9196815105...call anytime

Friday, January 10, 2014

She is getting harder and harder to wake up at night... I wish even if it's every other night just to let her sleep... I understand she needs the calories but she need sleep just as much, you grow when you sleep... She has been pooping like crazy these last two days... But we found out that her urine and stools were a total of 14, so her Urine is getting super close to normal... We haven't heard any test results yet, but we think her pooping so much could be a reason for her weight loss... She is weigh in this morning at 9.10, which is still an ounce lower than yesterday morning... She didn't lose or gain today, so we have maintained our 9.10 weight... They did try to blame me on giving her extra water... They said her urine is still diluted.. I have asked an asked the nurses to help me give her a bath and they always forget... So I decided to give her one this morning..well I didn't have a wash cloth so I used a bottle to was her hair... The doctors felt that her hair was wet this morning when they came in... I didn't realize they took the bottle that I used for her hair with them this morning... They came back an hour or so late and said "I saw this bottle with water in it, are you sure you aren't giving her water" and I explained that I had no other way to wash her hair and I asked for help several days and I couldn't wait any longer.. They replied "ok, her hair was wet, but we want to ask to make sure.. Can we take your bottles and you can have them back at discharge, this way it's all on us and we can rule you out"... I said ok, but was so hurt... I really hope that they see I am not doing this to her... She has some rare disorder that no one can figure out.. But I hope that this proves once and for all it's not my fault... We did have therapy today... Her shoulders and reaching is gettin much better... Today we work on leaning forward and putting weight on both her arms, working on pulling up, building tummy muscles... Not sure if we will receive results this weekend or not.. But I'll be sure to post when I know.. Just pray for us.. I have been so positive throughout this whole journey till now..

Thursday, January 9, 2014

We were up most of the night, which I figured we would be since she decide to sleep a lot yesterday.. I feel better after talking to the doctors this morning... We haven't heard the results of the cystinosis test, but they also think that it still could be the fructose deficiency, and now maybe her body is finally able to adjust to the formula since she has been on it for a week... Or that her kidneys could of got and "injury" by being on the 27 cal diet... Thy explained that all the nutrients in the high calorie makes the kidneys work harder, and could of cause some muscle loss making the filter not strong enough to do its job... So now being on the 24 for a week, maybe her kidneys are finally strengthening... It's all to soon to tell... She did gain 4 oz this morning, making her weight (9.11), but for the first time in 4 weigh ins we lost 3 oz (9.8)... Everything is still up in the air since we don't know any test results but made me feel so much better that they wasn't trying to blame me... She did have her electrolytes checked again this morning cause her sodium went up... And they wanted to make sure the supplements wasn't to high.. But it did come down.. So we will be on them a while longer... One of our favorites nurses came in today and played some songs for her on her day off.. She got to play the bells and she loved it.. To hard to get a picture... We have had a great day.. Oh I almost forgot, her urine was at 12 yesterday, so that's good that it dropped lower.. But still high.. Thank you everyone for all the support.. We love you all

Wednesday, January 8, 2014

All I can say is that I am glad I have a good support system... Today has been aggravatin, that we have barely left the room all day... I feel hurt that I can't feed my baby... I feel like they are trying to blame me especially since we have had big and different changes today... All they say is that they need to make sure every drop is getting into the bottle... All you got to do is pour it, makes me feel like they think I'm doing something... She weighed in at 9.5 ( 11 ounce gain), which sounds impossible to all of us except the nurses and doctors... The tonight she gained 2 ounces (9.7).... I do nothing different and I don't understand why her urine has gone down to 14 and why she gained so much when I have done nothing different... They said it will take several days, but it hurts my feelings tremdously... We had therapy today... Adding arm circles to the rest of our exercises... She is starting to bend it more, so I can see that therapy is helping a lot... The other changes were that she hasn't eaten her whole bottle since 6am... Her 9am and noon feed, she ate 5 ounces and her 3pm feed only ate 3 oz, and this past feeding she at 4 1/2oz... I just don't understand and I don't want them to blame me.. I would never hurt my baby... We decided that the hearing test is not important enough to sedate her and do it, so we are going to scratch that... We are going to talk about maybe weening her off the sodium supplements since her electrolytes have been good for a while... And hopefully we will know some test results tomorrow... But that's all for now.. Just been a bad 5 month birthday

Tuesday, January 7, 2014

We had a normal night... Eating good and peeing just the same... Her urine output stayed consistent at 18... She gained up to 8.14, a five ounce gain and then like normal dropped this evening to 8.10 ( four ounce loss)... It's been an aggravating day... The nurses have to make her bottle and watch her eat... Her formula is pre-made, and all you have to do is pour it in a bottle... So I don't see how they would do it different than me...but other than that nothing happened today... We went and played in the playroom, till she had to mark her territory and pee all over the place... Her nickname is maddie moo... A new resident thought we were saying Maggie.. So they were calling her Maggie moo after the ice cream shop... So when we corrected her it kind of stuck... So that's all for tonight... Please everyone bundle up and keep warm

Monday, January 6, 2014

Last night was so weird, it has us all puzzled... Since we have been here... Her urine output has been our big issue... Well last night, she didn't pee at all from her midnight feed to finally sometime during the 3am feed... We had the same nurse last night as we did the night before, and she thought it was weird to... The night before, she peed like a fountain, having to change her bed and clothes at every feeding, then last night she didn't pee at all... We can't seem to keep a happy medium... So the doctors had to come in at 3am and 6am to make sure she was still hydrated... And praise God that she was... She finally started peeing like she normally after her 6am feed.... Her urine dropped to 15 overnight ( which is better than it has been), but rose back up to 18 over the course of today...she did gain 4 oz, making her weight at 8.9 this morning, and was very pleased to see that we didn't lose weight, but we didn't gain either (8.9)... Where her right arm/shoulder muscle tone is low, we are going to start getting therapy every other day... Today we did shrugging exercises... Grabbing under arm armpit and moving her shoulders up and down... She did not like that at all, but we got to do it... The hearing test was attempted for the third time, same ol same, she did not lay still enough... So i don't know if thy will try again or if they will let it go... Then when it rains, it pours... Bryson fell at hollys and cut his chin... She had to go to the emergency room to get it glued together... Surprisingly he was still in a good mood, and don't cry other than when they held him down to glue his cut together... I have some tough kids, I could not ask for anything more

Sunday, January 5, 2014

Well our night was interesting... Every time we woke her up to eat, we had to change her bed... So I knew that this was not a good sign... Sure enough her urine output went back up to 18... She did however gain 3 ounces his morning (8.9).... We did decide that since her electrolytes have been normal for the past few days, then we will check them every other day... She didn't get them checked this morning, so we will prick her in the morning... She did lose a good amount of weight tonight... We dropped down to 8.5... Which is pretty close to admission weight.. With her output of urine so high, she is at risk for dehydration.. So the doctors came in just to check her heart rate and fingers, toes, and movement to see if she was dehydrated.. She's not, so we will see what the team will say tomorrow... That's all the medical stuff... Mom, Tim, and Bryson came up today... And because it's flu season, Bryson wasn't able to come to Madison's room... We are allowed to sign her out and walk around, so we all enjoyed lunch together... I wanted to spend time with Bryson, cause it's been 10 days since I have seen him.. So mom stayed with maddie.. And me, Tim and Bryson went to a kids museum called marbles... They had a big farm that he played in, an ambulance, fire truck, and bus that he got to drive... We went and played vet, and took care of animals... We spelled some of our name in the classroom.. They also have these water tables, that he was able to play with boats and ocean animals... Then we went upstairs, where he got to make pizza, play with balls, and climb into a jungle Jim with a slide... There was the hardware part, that we got to build race cars and then race them (Bryson beat daddy, if i might add), then we finished up the day, making maddie a picture and playing in the toddler gym... It was the best 5 dollars I have ever spent... I did feel bad for mom, cause Madison spent the whole time I was going crying... She finally calmed down, when she was pushed in a stroller but I felt so bad... Mawmaw brought her an aquarium, and she loves it.. I really don't spoil her, it's just for the past two months, I am pretty much all she sees... But it was a great day, and I'm thankful they got to come up