Tuesday, December 31, 2013

We had a really rough night... I am guessing that her eyes weren't dilated anymore at 3 am cause we have been in a fairly good mood... We just played and then slept good from 630 to 9am..her urine was tested again... And it still shows her not concentrating but also showed that she is peeing out her sodium... So because her sodium is low, she is getting 1ml of sodium cloride twice a day... It's in the normal range now cause it was tested again about an hour ago but we will keep her on them for now... One rare disorder of excess urine output is a high fructose deficiency... Although it's only about a 30 percent chance she has this... It's better to rule it out to... This deficiency is associated with liver problems and fluctuating blood levels, neither of which she has, but the biggest symptom is excess output which she does... So to see if she has it.. We have changed her formula to enfamil lipal... Which has no fructose or corn syrup in it... And see if over the next several days if her output will go down... She did have her sweat test done today... They did it on her arms... And used gauze and tape to collect the sweat, and she did sweat really good, and that of course came back negative for cystic fibrosis, which we kinda knew it would..she has started to be weighed twice a day now... We did good this morning with a one ounce gain (8.9), but when she was weighed tonight she lost four ounces making her 8.5... I think some of it relates to the sweat test, but I haven't talked to the doctors yet to see what they think... Her feeding after she was weighed tonight, she had a big vomit spell, so please pray that that was a one time thing... She is already a mystery and I don't want her getting sick on top of it... Happy New Year's Eve everyone... Please be safe... Since we didn't sleep last night... I'm going to be uncool and go to bed early

Monday, December 30, 2013

We had a normal night with the exception she woke up every four hours to eat instead of three... She still peed way to much throughout the night, so I wasn't confident in how the repeat of the urine test was going to turn out... So we put cotton balls in her diaper to collect the urine by 10am... Sure enough just as I thought the results came back the same, meaning she isn't concentrating her urine on the lower calorie diet... This means her kidneys are still working to hard because she isn't able to handle the amount of protein, even though it's what the average baby gets... She did gain weight though... Gained 2 ounces making her weight 8.8... If she continues to still gain weight then there is a low protein formula we can try to see if her kidneys can tolerate that... We might start that tomorrow... She was suppose to have her hearing screen for genetics today but she was fussy and they were unsuccessful, so we will attempt it again wednesday... She did have her eye exam today, again for genetics to make sure her retina and eye pressure and nerves were ok, they had to dilate her eyes but everything was fine... They told me that the dilation wouldn't go away till morning, so we are sitting in the dark cause the lights hurt her eyes... She did have more physical therapy done... This therapist said her muscle tone in her shoulders were low and to help with that we need to keep her arms in front of her rather than on the side or in the back... The highlight of my day was that this sweet girl of mine finally rolled over from her tummy to her back... She had been rolling over from her back to her belly for several weeks now but today she rolled the other way... She decided to show off for these nice doctors here... I'm am definitely one proud mommy

Sunday, December 29, 2013

What a night.. She was up most of the night catching up on her eating... At this time she was still eating on the 24 calorie...we had a fairly calm day today... She was weighed at 5am and she didn't gain but didn't lose, still weighing 8.6... Which is a blessing she didn't lose since she didn't eat for 12 hours... She had more blood work done today... This was for her fat soluble vitamins ( C, D, and K)... And to make sure her electrolytes are still normal... Since she was concentrating her urine...we decreased the calories once again to the regular 20 calories... She then will have her urine tested again tomorrow morning to see if she is able to handle the regular amount of protein... If she can't concentrate her urine.. Then it means there is some kind of rare genetic protein abmorality that we will have to test for... If she does concentrate her urine, then it means that this could be the problem all along and we can add fat tablets to catch her weight up... Her heavy metal test needed urine to go with the blood tha was collected last night, so we bagged her twice and finally got it sent off... There is a genetic test that she has given blood for... And it's a sugar molecule test.. To make her all her sugars are being absorbed properly... So we signed the consent form to have that sent to California to be tested... That's all the medical news... Our favorite part of the day was getting visitors from Tim's grandma, aunt Melanie, and cousin Katie... They spoiled my little maddie with clothes and other toys.. And had a very nice time with them today... It meant a lot to me that they came... Sad news is Daddy had to go home and return to work tomorrow... But Bryson needs daddy too... This is the longest time I have ever not been able to see Bryson... But we have explained to him quite often what's going on... I hope everyone haves a good night.. And keep remembering us as hopefully we are getting closer to the answer

Saturday, December 28, 2013 ( all today)

We had a good night... Woke up every three hours and ate like a champ on the 24 calorie diet... She was weighed and it showed her weighing 9.0 even... We didn't celebrate because that was a 11 oz gain from yesterday which made no sense to us at all... We weighed her in an hour later and it was more accurate, weighing in at 8.6 (a one ounce gain)... She did continue to have over accessively wet diapers but when we saw the kidney doctor today he didn't have any other ideas to run... She had a lot of hormone blood work done (12mls taken) and one of them is the vasopressins... Which is a hormone in the pituary gland in the brain which tells the brain not to concentrate the urine so that's a big key we are waiting on too... It's been a difficult day... She had to do a water deprivation test... which tests to see if her urine is being concentrated...we had to fast her for 12 hours, which means she wasn't able to eat at all...she ate at 10:30am and is now finally being able to eat for first time and its 10:30pm...but the Good Lord was with us, and she didn't fuss at all for whole day of not eating...this maybe partly because of the fever that she had today (which just went away on its own) or the amount of blood they took this morning, so she slept most of the day...they did get some urine from the cotton balls we had to stick in her diaper, and it was a yellow color, instead of the clear that it has been, which was good, meaning that her kidneys are working right, but we had to have the blood work to finalize if she passed, which she did...overall this means that she is getting to much protein or water in her food, so tomorrow we will talk about putting her on a 20 cal diet, which is what a normal baby eats...this could be the big answer we have been waiting for, but to soon to tell... we are unsure of why UVA, wasn't concerned cause she had the same output levels of urine there as she has had here.. when they did the blood work tonight, she did have a heavy metal test done, just to check her chemical levels, to make sure she hasn't been exposed to something, its just one of those other things we can rule out.. we did find out that since UVA isnt certified to do sweat test, she will have to have that redone, which could take up to 5 or 6 days, but the main thing today was the urine, and im sorry if it seems confusing, it is to us as well... not sure how reducing her calories is going to reduce the water amount... but can't hurt to try, and see how she does.. ok now some positive things, we did have some good friends visit us today... Linda and George Libey...we use to bowl with them and they are so very very sweet... and they brought her a new buddy (a owl or penguin, we can't tell HAHA), and our awesome GOD has put the Little Mermaid on tv for us to watch with her, she deserves her favorite movie after being starved all day.

Saturday, December 28, 2013 ( things i forgot yesterday)

So as I said yesterday was very crazy... As I was laying down for the night I realized that I left a few things out about yesterday... I talked about her urine, weight of course, and genetics... But I'm pretty sure I didn't mention she had two heel pricks yesterday for blood work... The first one was for the electrolytes... Wanted to compare her blood electrolytes to her urine... It came back normal but is unusual since her urine is not concentrated... So we will talk to a renal doctor sometime about that... The second one was a BMP ( basics metabolic panel)... This was done at UVA but did it again to compare numbers to see if there is any change which we are still waiting the results from that... The last thing that I forgot yesterday was the doctor noticed that her leg muscles is tight and so we are seeing a physical therapist to get exercises to help... Right now the therapist is saying keep her sitting down to loosing and relax muscle and belly time so we stretch out the muscle... So that brings everything up to date I apologize for the inconvience

Friday, December 27, 2013

What a crazy day... Our first night at duke was rough...they do vitals every four hours and then she was evaluated eating at 430 this morning... So overnight they did the first urine analysis... And the way they did it was by putting cotton balls in her diaper... Which I didn't even know they could do... But it came back unusual because it has looked quite clear meaning that her urine is not as concentrated as it should be...they then had to run it again, and this time she had to be bagged..just like at UVA, it only took one time but again it was clear, and sure enough it came back the same... they did it a third time by a cathater, and it still looks like water, but we are waiting on the results, but more than likely we will be seeing a renal doctor... she has had different problems with her urine before, at roanoke there was "cast" cells, which is why they did the kidney ultrasound (which was fine), then at UVA she had reducing cells, which means glucose in her urine (but second time they did it was fine), so we don't know why she is having so much problem with her urine, especially with the amounts she is eating..they did do a heart ultrasound today, and the person who did it said it looked fine, but still waiting on the final reading by the radiologist...she did weigh in at 8.5 oz this morning at 8am which was a 3 oz gain which is good...overall through our journey she is making her own growing curve which is reassuring even though it is under what its suppose to be...so as long as she continues to go upwards that is what we want...we have mentioned that we want all her bowels checked but they haven't mentioned doing anything with it yet... they have noticed that she is getting way to much protein from the formula...which is making her kidneys work harder than they are supposed to.. so they are going to start her on a 24 calorie diet, and if she needs the extra calories then they can add stuff to the formula, like cereal or fat tablets to help instead of piling on more protein... we have been able to walk around the unit, and all the windows are painted and she loves to look at them... we did see a geneticist also, but right now she didn't have any more ideas on what to do..i think that sums up everything of our crazy first day, but as always ill post every night...

Thursday, December 26, 2013 (night)

We are all settled in down here in duke... It's very huge but very nice... Not much happening tonight but another urine analysis since the ones she had, had been abnormal the first time... But we found out that they can get the urine from placing cotton balls in her diaper instead of bagging her which is a good thing... We have to write down every feeding so that they can monitor how much she is eating and watching her sucking reflex... There was a 9 oz weight difference from dukes scale than our pediatrican scale... Here she weighed in at 8.2oz so I'm not sure which is more accurate... She will get weighed every morning... So we will see how she does overnight... But I'll be writin every night and thank you everyone for reading

Thursday, December 26, 2013 (day)

I hope everyone had a great Christmas... We were glad to be home but Madison had the stomach bug.. But we were glad to see everyone while we were home... I can't thank my church for laying hands on her on Sunday.. We just want answers really fast so I can stay home and be a mother to Bryson as well.. I will write tonight to but since I was unable to do my blog at home, I wanted to catch everyone up first... We went Friday to the pediatrican and she weighed 8.11... Which is an ounce less when we left UVA on the 18th...we went back this morning and she was the same 8.11 so we are on our way to duke as I am typing this... Now she isn't wanting to eat... Me or my granny could get her to... Hoping that will change quickly... We did find out this morning that her bones in her legs are fine... But her bones in her hands are the age of a 2 month old... So I don't know exactly what that means... I'm hoping they will grow when we find out the issue... But I'll write again tonight with update at duke..

Thursday, December 19, 2013

We got to come home yesterday for Christmas.. we were very excited...I am sorry this is late but my new phone is having issues and I haven't had service at my house..I am getting that worked on... before the left the hospital, she did have a knee and wrist x ray... they want to keep close eye on her bones to make sure they are growing properly because she lost a tiny bit in height... but everything looked good... we have a pediatrican appointment tomorrow for a follow up and to get her 4 month shots... we will be going to duke either the Thursday or Friday after Christmas...we are glad to be back home even if its only for a little while..but its the most time I have had with Bryson in a long time....I may not be able to post every night but I will do my best... we were able to finish Christmas shopping...only thing left is to find this princess of mine a cute dress to wear... we love you guys and continue to remember us as our journey is on halt for Christmas, we will soak up all this family time that we can get

Tuesday, December 17, 2013

We got the news that we get to go home tomorrow... We are excited and even though we don't have the answers...it will be nice to go home and enjoy Christmas with everyone before we have to head to duke...we did meet the new pediatrican and he didn't have any more ideas to try either..he said the only thing he noticed was her pinky on her left hand bends higher than her other fingers... I don't know exactly what that means but that's the only thing he saw that the others didn't... We were also told that the geneticist is very sure that it's not Russell silver syndrome, so he didn't need to come in and see her... I will however be keeping the blog every night at home as well so that we won't have so much to catch up on when we get to duke... We did get another visit from the clown tonight.. This clown sang to her, and had Bells that she could shake, and of course the bubbles... We had a really good time...we learned today that she gets a massive belly ache if we let her eat 6 oz... She seems hungry after several hours of eating, we thought giving her more would help fill her up but just make her scream... Lesson learned... Our weight stayed the same tonight.. Still weighing 8.12, looks like our 9 pound party is still on hold.. But even though we are going home please keep reading for updates

Monday, December 16, 2013

Today is our 2 week anniversary since we got admitted to UVA...It was a very hard day today, as today is daddy's birthday and we did not get to see him...he knows that we have to be here and he understands but doesn't make it any easier, not being able to see him..Our night was pretty normal, waking up about every 4 hours to eat...it was a pretty uneventful day..it started out with a chest and abdomen x ray which we didn't know she was having, just seeing if it showed up anything unusual...we are waiting for the official results but of course according to the nurse who took the picture it all looked normal...then the pediatric doctor came in, telling us again that they are out of ideas and when we can say ok lets just go home...well we have to see the geneticist first, who was suppose to come today and they didn't...she suppose to get tested for the Russell Sliver syndrome (which is where they just don't grow, from utero and after birth)...which again isn't her case, it just rules that out as well... Bryson however had a wonderful 2 year check up with our pediatrican at home...got to be weighed on the "big boy" scale for the first, weighing in at 24 pounds...well, Madison's weight was not so good today, we lost 2 ounces, making her weight at 8.12...I was hoping that we could have a 9 pound party tonight, but it was not the case, maybe tomorrow?? we will see.. We did get a surpise visit from Brooke tonight again, she was relieved from being done with her first semester of college, and came to see us before she goes home tomorrow... she has definately made this stay easier with her company...we are looking forward to getting to come home for Christmas before possibly going to Duke...Bryson is getting pretty upset that mommy isn't there, Granny tells me... but God gives me patience as we still are on our journey to finding out whats wrong

Sunday, December 15, 2013

It has been a fantastic birthday weekend... she had to be waken up at midnight, 3am and 7am to eat, but overall did very well...they are still force feeding her which is not helping our situation cause it makes her very fussy with a belly ache... the MRI came back normal as we expected, and was very thankful that they got what they needed and she didn't have to be sedated..so tomorrow we will see a geneticist again about the Russell Silver Syndrome, which is where babies don't grow at birth or after, but these babies usually have a low birth weight, a disporportional head, and slower development, which she has none of these things, but it rules it out too...she is just such a mystery to us all... She did not gain but did not lose, weighing in at 8.14oz (almost to 9lbs YAY).. hoping we can keep a good weight so we can enjoy Christmas at home before going to Duke... around lunch time, we got to go enjoy lunch with Grammy (Tim's mom)...she came and brought Bryson some balloons, and candy for mommy and daddy... Madison even got to join us for lunch so it was very nice...we also got to play in the playroom for a little bit, before it was nap time for both Maddie and Bryson...during nap time, Tim gave me my Christmas present, an Iphone 4, which my tempered 2 year old allready dropped it, but good thing for cases, so its been fun trying to figure it out..Now we are visiting with our MawMaw (my mom), and she brought Bryson this huge Mickey snowglobe that plays music and blows snow, and both of my kids love it... It has been such a good weekend, and I really hate to say bye to everyone that came today... but right now we need to get my baby healthy

Saturday, December 14, 2013

First of all, HAPPY 2nd BIRTHDAY to my sweet BRYSON. Like I figured it was not a really good night... she got up to eat several times and woke up for a few minutes to poop...Crazy girl... today we went for a MRI on her head today to test for diencephalis syndrome (which the brain tells the body it doesnt need nutrients)...we tried it without sedating her to see if they can get what they want... she was wrapped in a blanket then put in this mat thing that clipped all across her body... the only thing you could see was her head sticking out...she looked like a human hotdog... I got to lay on the bed and go in the MRI with her... they said it was very difficult but they think they got what they wanted..we still waiting on the resulting to see...Well, they have started making us force feed her, and she has spit up some with each feeding.. we think the scale is off because when she weighed in tonight she was 8.14...which is a 7oz gain overnight...just seems so crazy, and she pooped 3 times today..but I was thankful that the doctor came in to tell us that it is for fact not a calorie deficiency, cause she is eating more than she needs to and still on some days loses weight..well I was very very happy that I have gotten to spend some time with my birthday boy.. we got to eat cake and we shared it with the nice nurses.. he got a mickey coloring book, mega blocks in a wagon, a farm, some tractors and a jacket..she is totally rotten.. we all got to walk to the other wing to see there pet bunny name "Lola", and got to all walk down and eat dinner together as a family which we havent gotten to do in a long time... Parents love on your babies, cause when you have to go so long without seeing them, its very heart breaking

Friday, December 13, 2013

So, not much to post about tonight.. she had a very good night..They let her go a whole 6 hours without eating..She ate at 1am, then we had to wake her up to eat at 7am or else she would have gone longer... It was a wierd day, when she wasnt sleeping (which was a lot today) she was screaming... the endocrinelogist came in to see us this evening but she didn't have any more ideas either...They have mentioned doing a CT scan on her head, hopefully the beginning of next week..this will help them see the whole brain, unlike what the ultrasound showed...they are looking for some kind of syndrome (I apologize that I don't remember the name of it), basically the hypothalamus tells the body that it doesn't need the nutrients and they don't gain weight...As, again, they think this is unlikely because 1) she did so well her first month of life, and 2) she has gained weight, they want to be able to rule that out as well.. Kids with this syndrome just never gain weight, and even though we have trouble gaining, she does still gain...on a bad note she did lose a pretty good amount of weight today, 4 oz making her 8.7oz... We did get to see our cousins Melanie and Bump again today, and talk about spoiling my baby...They brought her more blankeys, as we all know how much she loves them, and binkies (so we have spares), not to mention spoiling mommy with chicken nuggets and bryson with bubbles to play with when he comes tomorrow... we have appreciated all the love and support that everyone has shown... We feel God's presence and gives us peace, and even though we may not understand why this is taking so long, we do put our full trust in Him "I wait for the Lord, my soul waits, and in His word I put my hope" ... Psalm 130:5 Even though this could be a long journey for us, we have hope that we will find out what is wrong so we can fix it and can grow and be healthy. Continue to remember us, especially for patience and confidence

Thursday, December 12, 2013

Madison had a pretty good night...and slept well but for some reason I did not... I think after almost 2 weeks in here, the chair is finally making me feel like Im 90 years old.. well after Tim had a confrontation over the phone yesterday about the doctors not coming in, they finally came in this morning... they were shocked that she lost weight after having such good gains over the past few days...I told them that this was our normal routine... the only thing left that they can think of doing is having an endocrinlogist come in and evaluate her and see if he has any more ideas on what to try... The pediatrican doctor admitted that they may not be smart enough to figure it out and that transfering us to Duke might be the next step, but we going to see what the endocrinlogist has to say first...he didnt come in today so I am really hoping that we will see him tomorrow... Her zinc levels came back find, and that blood test also tested her thyroid again and it was fine as well... the growth hormone was part of the blood work as her zinc but that is still pending along with the basic genetic testing... she is eating 5 ounces of the 27 cal, instead of 4 ounces cause little miss piggy doesn't get full... she did put back on her 2 ounces that she lost yesterday, making it 8.11oz.. My favorite part of the day is when I got a visit from my cousin Ted Johnson who I havent seen in about 3 years... we have always been really close and I enjoyed catching up with him.. he was so sweet and brought me a fruit basket (since he knows how much I love fruit), and Madison a Christmas balloon which she absolutely laughs at for a good while.. i have really missed him and glad that he finally got to meet Madison.

Wednesday, December 11, 2013

She had a pretty restless night..she slept ok but would spit out her bink, but once I put it back in her mouth she was fine...they originally planned to change her formula to the alimentrum amino acid based formula..She had a normal 8oz bottle at 20 Cal level instead of the 27 Cal like normal to see how she would handle it...just like we figure she threw up some of it..so we have decided to keep everything the same...we again didn't see any doctors again today...the nurse told us that since she is gaining they aren't going to do anything else...we called our pediatrician and uva wouldn't let her access Madison's chart..so I did sign the paper to give our pediatrician permission to let her see what they have done...but they want to send us home Friday and our pediatrician isn't ok with that ...and is going to call Duke to see if they have recommendations...She lost 2 ounces today, making her weight 8.9...I am glad she is gaining I just don't know why she is losing to, and all her feedings are monitored... But UVA made it clear that they arent going to do any more testing and just to monitor her weight and then we can go home...which obviously doesn't answer our problem.. but if we have to sit here and not see any doctors I much rather sit at home...and then if we still have problems our next step is Duke, which our insurance will cover because we were admitted here.. so I am not sure what the next few days hold but as always Ill keep everyone updated... My idea is that we stay till sunday and monitor her weight every night... she has always had a doc appointment on the 16th for her 4 month shot, so then we could get weighed, the go back at end of week to see our progress and go from there... I will run that by the nurse tomorrow and she what she thinks, but since she lost weight today they may keep us any way though the weekend.. I hope I didn't confuse anyone..its still just as frustrating as ever... but on a happy note we did get a visit from our cousins Melanie and Bump.. and they have spoiled me rotten with chicken nuggets and fries...we loved having their company..it gets lonely here sometimes..

Tuesday, December 10, 2013

So had a rough night...waking her up every 3 hours to try to get her to eat...she had one more test done to test her zinc levels...but the doctors have become very scarce...so makes me feel that they are almost done....the only doc that came in was a resident and he said that they are going to try the alimentrum formula tomorrow at 30 Cal...and that her weight gain has been incredible. (Weighing in at 8.11 today...3 oz gain)...and they think its only a calorie deficiency...which if that was the case why didn't we try this in the first place... my biggest fear is that we are going to go home and not do well even though i do the same thing they do.. she is also on supervised feeds which means another person has to watch me feed her... i guess that is for a number of things like watching how she sucks, is she taking all of it..but still makes me feel like they don't trust me... so we will see what tomorrow holds... on a positive note...we did get the pleasure of visiting with Brooke again and we got to meet one of her friends (sorry Brooke I don't remember her name)...she brought me some books to read so its not so lonely... and we also got a clown visit and got to play with bubbles and she loved it... never seen such a smile..but continue to pray that they will continue to give it more thought cause i don't want a fourth admission somewhere... time to get some rest while I can.. God Bless and we love you all

Monday, December 9, 2013

Today was pretty uneventful...they still waiting on some labs to come back but everything has been normal so far....so they still deciding what to do next..it was rough night..they put the bag on her to try and collect her urine but was unsuccessful until the 6am feeding....she also had a basic chromosome blood test done this morning. And still waiting on results for that, and the rectal biopsy..We did get the urine analysis back since we got it so early and it came back clean...so the other one was a false positive....I know they are working hard but its aggravating when they are talking about doing supervised feedings...they say its to make sure she is taken in enough and obviously she is if she is gaining weight( gained 3 oz today, making her 8.8)...and since they make her bottles and I just pop it in her mouth....the doc decided since they couldn't fill her enzyme she needs just to take her off...it didn't help her or hurt her..they are still pretty lost at what is going on...the GI doc that we saw today is ordering a blood test for the growth hormone but im not sure when that will be..he also said the lymphnodes wasn't as big as the surgeon made them out to be since she doesn't have any meat on her bones...they also are making her eat every 3 hours again...which I told them that that wasnt a good idea cause it doesnt digest that fast and since she doesnt poop then she just spits up and she has the last few feedings... I am praying for more patience and I can feel God's presence, cause if He didn't help me between getting the sweat test done and these supervised feedings, I would have done lost it.. but everyone has been so kind and love her so much and im very glad we are here

Sunday, December 8, 2013

Happy 4 MONTHS old to my sweet baby girl... today was an interesting complicated day...she slept so good...only woke up one time to eat...the doctor came in and told us that her metabolic testing she had done yesterday came back mildly elevated ...nothing to concerning...however her urine analysis came back with what they call "reducing cells" which has to do with glucose levels....so it could be a possibility that she has a carbohydrate deficiency...but they want to test it again to see if it was false positive or if that is something we need to look more into...so they gave her miralax this morning to help her relieve herself..and indeed she did...however we have tried to put the bag on her for the urine analysis test 4 times...and have still not been able to do it...she has pooped in it twice or just peed around it....we have to give her a break now because it has rubbed her raw and she is quite sore...the only other thing we had today was the general genetic testing...they had to draw 4 ml. Of blood from her...this just test many differbbt types of mutations...and it has made her quite sluggish...and last but not least her weight stayed the same at 8.5...which im very thankful for especially since she had 3 bowel movements today... God knew just how much she loves the Little Mermaid... so we hate a date night watching the movie on the Disney Channel..she was very weak from all the blood so she slept most of it but it still meant the world to me to be able to cuddle her during the movie... i hope every body is safe at home and not out in the ice..we are still praying to find answers soon, but understand these things takes time... im very faithful that God has given these doctors the wisdom and knowledge that they need, and that he will get us home soon

Saturday, December 7, 2013

What an awesome night me and Madison had..she ate around 1130...slept till 330...ate then slept till 730...we got results of the sweat test and it came back normal which is a blessing but we are still at square one...so we have started metabolic testing...she had two heel pricks done today..one for a basic metabolism protein test and the other one is for liver proteins....we got told that pathology doesn't work on weekends and we should know by Monday about her rectal biopsy..she also had another urine test just to be safe for infections..and the last thing we did was give her a suppository...and we will start miralax tomorrow...she is still having alot of trouble passing stools..on a positive note she did gain 2 ounces making her weight 8.5....it was a very good day being able to spend alot of time with my sweet Bryson..we got to look at the fishes and play in the playroom, we played in the sink with water and of course ate like pigs... thats the hardest part of all of this..not really being able to be a mother to my Bryson for the past 8 weeks.. and unfortunately because of the weather me and Tim both decided that it was best for Bryson for them to go on home.. breaks mommys heart but im hoping that we will be able to be home for his birthday next Saturday...

Friday, December 6, 2013

Well we had a pretty terrible night...for some odd reason the nurse came in at 130 and said that we needed to put a bag on her to do a urine analysis...i asked why now and said it needed to be done by morning..so they bagged her and then around 4am she had peed on everything but the bag, her bed, clothes and some in diaper...so then they had to do it again.. they bagged her for the second time around 430am..and i was told she had to be sitting or standing up so that it would go in the bag...so if that wasnt aggravating enough the surgeon came in at 530 to check her from the rectal biopsy..the bag was finally removed around 6 so we got to sleep till about 8...well the sweatest was supposed to happen at 930am but it didn't happen till about 11am..i was just happy that it was finally done...however she only was able to sweat on one leg and they were unsure if that was going to be enough for the test...they never came back and said anything so i assumed that it was...they also said the results for the biopsy and the sweat test would be in today so im hoping to know the results first thing in the morning so we can go from there...we are very excited that daddy and Bryson are here for the weekend...it was nice to hold my sweet almost 2 year old for a while... She did unfortunately lose another ounce today..so she is now 8.3...but has been spitting up small multiple amounts every feeding.. i am hoping we hear some results tomorrow and have a better night tonight...

Thursday, December 5, 2013

We had a really good night again... She woke up and 1230 and 330 to eat and then didn't wake up again till 830. The residents came in and told us that the sweat test was going to be done, blood work to check her amino acids, and the rectal biopsy... however they did not come and do the sweat test again, and have promised once again it will be done early tomorrow morning... it better be or else this will be one mad mommy...cause being friday means they wouldn't do it till monday and im not waiting that long since they are thinking its a good chance she could have cystic fibrosis... She did get her amino acids drawn right before noon, so she was able to take about a 2 hour nap before the rectal biopsy began... The surgeons do not think that its hirchsprung disease because she didn't poop while they were doing the procedure...she is however very constipated and a 15 minute procedure took about 45 minutes... The went up through her bottom and cut tiny pieces of the large intestines...but there was so much stool in there they had to scrape some out before they were able to get what they needed... She did good with not spitting up until after her 230 feeding and then she has thrown up small multiple amounts pretty much like yesterday... but on a bright note..she didn't gain but didn't lose..we are still at 8.4... but because they measure in grams here she might have gained a few more grams then yesterday... we did get to visit with Brooke again today...and she was so sweet and brought Maddie a "its a boy" bear HAHAHA... and a book for me to read... and we also got a visit with Mawmaw, Amy, and Broden today... we had dinner together and they got a taste of the fussy Maddie that i have to deal with all day... but im hoping the sweat test is done tomorrow and that they will consider testing her for other things while we wait for the results... i was glad we had some stuff done today...

Wednesday, December 4, 2013

We had such a great night...she woke up only one time to eat around 130...then didn't get up again till about 630... so we got some much needed sleep... Tim had to go back to work today.. and he barely missed the residents coming in. It was a very uneventful aggravating day... the plan was to have the sweat test done and the gastrointestinal doctor come in and examine her lymphnodes and possibly do the rectal biopsy...they are thinking about doing that again because of the funny color stool with the funny odor that Maddie had this morning...makes the pediatrican think more towards hirchsprung disease...However, no one came in today...not one doctor..and no sweat test... so we have been very aggravated...The resident came in and was unsure why the sweat test wasnt done today but promised that it will be done by noon tomorrow...they wont really test her any more for weight issues until they have ruled out cystic fibrosis. But we are hoping that we will make more progress with the doctors and at least sweat test tomorrow... Another downfall was her spitting up numerous small amounts every feeding today and so i figured that she wouldn't have a gain today..and sure enough she didn't..she weighed in at 8.4 (2 ounce loss)..so very long and boring day...a very nice volunteer came to sit and hold her while i was able to go down and get something to eat..and she also brought Maddie a toy that hooks on her bed so she has some entertainment... but we are hanging in there..and hoping for more answers soon I do ask that you also keep Maddies little boyfriend Cooper in your prayers...he is 14 months old with a brain tumor on his optic nerve and at first they thought it was slow growing but now they think it is more aggressive...we have been very blessed to meet him at Roanoke Memorial...and spend every day of our second admission with him...and he means alot to us... He is scheduled for a MRI early next week so they can see what change has taken place so he gets the right chemo...Thank you all for the prayers and concerns for these sweet babies of ours... We love each and every one of you

Tuesday, December 3, 2013

We had a fairly difficult first night at UVA...she was still up about every 2 hours still clawing and screaming with her head... We only have one lounge chair so Tim and I alternated shifts with her... she was very very restless... she woke up in a fairly decent mood and continued to have an appetite through the day. They did an ultrasound early this morning on her head...everything came back normal... they dont want to do an MRI unless last resort because of the anthesia and her being so small... They were going to do a rectal biopsy to check for hirschsprung disease, which is where the nerves in the large intestines isnt quite developed.. The surgeons who do that came in and decided to hold off on that unless the gi doctor felt necessary... she isnt showing the signs for that disease which include not passing a stool at birth and straining to go...her problem is that she doesnt go enough. They did some lab work and the only thing that came back today was the hemoglobbins which were normal. The pediatric surgeon came in to evaulate her and did find that she had enlarged lymph nodes in her groin area which could mean a number of things such as a blockage or inflammation...so we will talk more with the gi doctor tomorrow about that...but that is a good start to helping her pass stool more frequently.. last but not least was her weight... she was 8.0 here yesterday on our "dolphin" scale.. and was 8.6 on the same scale... we don't think that that is quite accurate since she did have a bowel movement today and we held off her eating... but regardless it is a gain and that is a good sign...worries me about tomorrow if she was to drop some though.. just very hard to believe almost a half a pound gained in one day when we do same thing at home... but we are here for a while and will find answers soon we did have some very awesome visitors today... my good friend Brooke Conner came up and visited for a while. She goes to school here and it meant so much that she took time out of her busy finals schedule to come see us... and my cousins Melanie and Bump drove an hour... they got to see Maddie at her screaming fit and fighting sleep so bad.. but it was so good to see them...and some awesomely funny clowns.. who gave me the "seal" of approval mom sticker.. so i am definately assured that my mommy skills are the best for this sweet girl of mine.

Monday, December 2, 2013

As most of you Madison has been having struggles with her weight. So after 10 days in Roanoke Memomrial we have been admitted to UVA Childrens Hospital. So this morning we had our follow up visit with her pediatricans and she lost weight, and is down to 8lb 3oz. The original plan this morning was to send her to Wake Forest but because the insurance company decided at the last minute that they would not cover the full cost for us to go, we got redirected to UVA. When we arrived at 7:30pm we were put into our private room and had her vitals taken which were all good except her weight. She weighted in at a whopping 8.06lbs. The resident doctors came in they checked her out and received the background information from us and will monitor overnight and come up with a game plan for tomorrow. Madison has been extremely fussy all day and still grabbing her head. Hopefully answers will be given soon. Please continue to remember us in your prayers!