2 steps foward and one back...

I guess at least it's not one step forward and 2 back, though at times it sure feels like it.  The good news is that Aubrey graduated from PT and OT today.  She is where she should be with her gross and fine motor skills!  She had a good time showing off for them today.  She will continue to see the speech therapist for the foreseeable future, but I knew that we would be continuing with ST.  The not so happy news came from our genetics appointment this afternoon.  I went in fully thinking we would be discharged from their practice because all her tests have come back normal and her development, except for her swallow, is on track...but I was wrong.  She wants another test run to test for PTEN syndrome.  I've avoided Dr. Google, at least for now, because I know it will likely be a few weeks before our insurance approves/denies it and then at least 6 more weeks once the test is run....so to save what little sanity I have left I'm not getting on Google.  I debated allowing the test to be run, but decided for a few reason's to do it...1. there is no poking involved, they can use the blood sample from her last test for this test.  2. if she does have this syndrome the doc said that one of the problems is an increased risk of early onset breast or endometrial CA.  So, I feel like I need to know if there is a problem because at least then we know to watch for the "side" effect problems.  3. I have this need to know or not know that something or nothing is wrong with her.  It's frightening because both her geneticist and her neurologist are convinced she has some type of syndrome.  When I asked today why she feels Aubrey has a syndrome she said some of her features/characteristics are "peculiar"...not sure how I feel about saying my kiddo is peculiar, but it is what it is I guess.  Tomorrow we head back to Akron for her follow up with her gastroenterologist and for another MBS.  The MBS worries me as we have never gotten good news from it...each time it has showed a decline in swallowing/increased aspiration.  I was all ready for it and then today's appointment kind of knocked the wind out of my sail.  Tomorrow is also Brooklynn's 3rd birthday, so good or bad results tomorrow is about B :) 

Fall fun

The girls are finally enjoying their swing set :). It's a nightly after dinner activity which is a pretty fun way to end the day.

DANCE :)

Mackenzie and Brooklynn started dance today!  I'm not sure what I have gotten myself into I fear :)  Mackenzie spent the afternoon dancing around the house and had her ballet slippers on most of the day.  She LOVED her class and was mesmerized the whole half hour class :)  I will get some pictures posted soon.  Brooklynn was funny...she didn't do much moving, but she stayed in her class and didn't cry or fuss.  I hope she will warm up quickly and really enjoy herself. 

Aubrey's 1 year stats :)

Aubrey had her one year check up on Friday.  For the first time in her life her development with the exception of her swallowing is considered NORMAL!!!!  It feels so strange to be so happy to hear the word normal when describing your child, but she's never been "normal" by the medical professionals.  So here it is...

~20lbs 15oz
~28 inches tall (the same as Brooklynn)

They still want us to work on getting her to take more food and less formula, but I knew that going into the appointment ;)  We also got the go ahead to switch to milk...Goodbye formula  :) 

Hopefully by the end of the month we will shake the failure to thrive diagnosis and get good news at her swallow study and truly be "normal" :)

Aubrey is 1!!

Happy birthday to my crazy little girl!!! I can not believe that a year has already gone by. It seems like just yesterday she was born. It has really been a crazy, stressful, hectic year. This by far has been the most challenging and stressful year of our lives. I can only hope and pray that this coming year is much much less "exciting". September 9th 2012 was a normal day until lunch time and then everything got crazy and miss Aubrey made an early enterance into the world. Her first day seemed fairly normal, other than her sudden enterance :) During her second day I noticed that she was more "noisey" when she ate than the other two girls, but didn't think much about it. During our stay in the hospital her eating got more difficult and we almost spent and extra day because she was loosing a bunch of weight. Her first few days were just the beginning of her very doctor filled first year. Within a week of being home she had a sinus infection and was on antibiotics. She cleared up, but the same symptoms returned within days. I mentioned to her pediatrician about her noisey feeding and he suggested a swallow study. At seven weeks old she was diagnosed with dysphagia and was shown to be aspirating on thin liquids. We were prescribed a diet of nectar thickened liquids and to keep her elevated after eating. From that point on things got more interesting and stressful. She had always been a slow feeding baby, but with the thickened liquids each feed was taking over 1 1/2 hours. By the time she finished a bottle she was already hungry again. It was a battle to get her to eat because eating was so exhausted. We battled through a number of ear infection and sinus infections and just general poor growth for the next few months. She was a very irratable baby and needed held constantly. She slept with us for months because she always sounded like she was stuggling to breath and was so fussy during sleep. She was not gaining weight, but this was being atributed to her constantely being sick. At her four month well baby visit her main doctor finally realized that something was wrong and began to panic a little bit. We were to have weekly visits and weight checks to closely track her progress or lack there of. Initially she gained a little, but the quickly fell off. Her formula was switched to an allergy free higher calorie and we were to prepare it so it was even higher in calories to try and combat the energy she was using while eating. Her motor delays were also becoming fairly evident at that time so she began seeing a PT. We were also given a deadline for weight gain, if we did not reach above 10lbs by the given date she would be hospitalized. Well, her weight dropped instead of gaining so she was hospitlized on Feburary 3rd, just shy of her 5 month birthday. We were expecting an over the weekend stay, but ended up being in the hosptial for 11 days, 7 at MedCentral and then 4 at Akron Children's. Having a child hospitalized had to be one of the most frightening times of my entire life. Poor baby underwent so many blood draws, a few x-rays, a couple catheteriztions, an MRI of her brain, and a sweat cholide test all within 11 days. It is a very helpless feeling to turn your 5 month old over to strangers and allow them to poke and prode her...which obviously is very painful. I am impressed that she was such a trooper and does not show a fear of doctors! Waiting for the results of the sweat chloride test was very stressful, initially all the doctors seemed to think she had cystic fibrosis. Her symptoms were very very similar to those of kids with CF. I was beyond thankful when that test came back negative. Watching her be sedated for the MRI was by far the most difficult thing during that hospitalization. I hope that no one has to watch that...it is beyond scary to watch your little one's life be put in the hands of a doctor and watch her try and fight the sedation with all her might. I could only stay a few minutes and then had to leave the room. After 11 days and finally some weight gain we left the hosptial with a failure to thrive diagnosis and no real answers as to what was wrong. The only thing that changed was they had us use a x cut nipple to help with her feeding. After our hospital stay we started PT and ST on a regular basis and eventually added OT into the mix. Watching her in her first few weeks of therapy was heart breaking...I know just enough about peds to know how far behind she really was. It's hard to be optomistic when you 5 month old still looks like a sickly rag doll with really poor motor control. Not much changed after being hosptilized. Her weight was very slowely going up, but still not the way they wanted, but just enough to keep us from being readmitted. The weekly appointments were always stressful, hoping and praying she was gaining enough. She continued to be sick with sinus/chest infections and ear infections on about a 2 week rotation. If my memory serves me right, she had an episode of choking around 6 months that prompted another swallow study. This was a bad day...her test showed that she was aspirating on every nipple/bottle at the nectar consistancy. She was moved up to honey thick and adding solids was delayed for another month. Her weight gain started to improve with the new consistancy...she was still gaining slowly, but not so bad. Her sinus trouble eased up a bit, but not so much with her ears. In the beginning of July she had tubes placed in her ears and things starting heading in the right direction.  She had started sitting up at 9 months, but other motor movements were still quite difficult.  In her 10th month she started crawling, going from laying to sitting, pulling to standing, and cruising the furniture.  She also started to pack on the pounds!  at 11 months she was 21.6lbs :)  Eating is still a challenge...she has a lot of texture issues and a very quick gag reflex.  The good thing is she really really wants to eat and works through the wretching and gagging a lot better than I would!  We are hopeful that we will be released for some of her speciallists at the end of September when all her follow up visits are.  She has seen so many...GI, neurology, genetics, othamology, audiology, and an ENT. We still have somethings to work on, but she is finally headed in the right direction. 

This year has been a challenge to say the least.  We have missed out on a lot of our friends and family's activities because caring for Aubrey and her illnesses has been a full time job.  I do no know how families with children with truly serious medical conditions cope on a long term basis...it is hopefully that she will out grow her issues.  All the medical test have not been able to point to a reason for her rough start.  Her neurologist is determined that she has a syndrome of some type, but all the genetic testing is normal.  So, for now we are just taking it for what it is.  Aubrey is Aubrey no matter what her tests show and we wouldn't trade her for anything.  Now "Walter" we could do with out :) 

If you made it through my ramble, that was Aubrey's first year.  I know that there are things I left out...it all blends together after a while and I've complained about her quiet a bit this past year.  I'm hopeful that year #2 will be better for her!!!

Update on us...

It's been forever since I've updated...our computer crashed and typing on the iPad takes FOREVER! The summer went by much too fast as usual. We had a pretty busy summer with lots of trips and not much down time :). We spent a long weekend in Nashville, a week at the outer banks, weekend at the Kentucky horse park, and a long weekend in georgia. Plus a bunch of day trips around Ohio. I hate to admit it, but I'll be glad to not ride in the car for a while! I've enjoyed my crazy schedule that allows me more time at home with the kids. I wish I could have dropped my hours sooner because I've really enjoyed all the extra time with them...even when they drive me nuts :). The kids are doing wonderful! Mackenzie is on her third week of kindergarten and absolutely loves school. I hope she continues to enjoy it. She starting to read and is working hard on practicing her writing. She's learned a lot in only 3 weeks :). I am still in denial that she is in "real" school. I think her favorite thing is riding the school bus! She hoped on the bus no problem her second day of school and asks to ride it every day. She had her first real haircut right before school started. She had about 6 inches cut off...this was HUGE for her! I love it, though it makes her look much to grown up. Mackenzie is still as girly as ever :). She starts dance mid September and has been practicing daily :). Brooklynn is the wild child :). I can't believe she is about to turn 3. She's gotten so much more independent, out going, and BOSSY!!! She is an opinionated girl and now that she can make it known, the whole world knows :). She is a goat... If it can be climbed she climbs it. Nothing is safe when Brooklynn is around!!! She finally decided that potty training was a good idea and for the most part except when she's asleep we are diaper free. She won't be starting preschool this year because with the way her birthday falls she has 3 years until she starts kindergarten. She's determined that she should be going to kindergarten with Mackenzie :). Brooklynn will also be starting dance mid September...this could be interesting as B doesn't not always care to listen to directions :). She loves to dance and will start dancing when ever she hears a good song, if no good music is available she makes up her own. I'm sure my neighbors have heard her rendition of the ABC song many many times! Aubrey is still keeping us on our toes...not because of medical stuff, for the most part, but because she is on the go ALL the time. My immobile baby learned to sit, crawl, pull to standing, cruise the furniture, and get from laying to sitting all by herself all during her 10 month!!! She's been practicing standing without holding on and I doubt it will be long before she walks. She's mastered going up the stairs...though not down yet, unless rolling down counts. She still sees her PT/OT/SLP, but only once a month now. Hopefully soon she will graduate from PT and OT. She's stuck with speech until she is able to swallow thin liquids and is eating more textures. Her swallowing is still a challenge. She's has a lot of aversions to things in her mouth and different textures, but we are working in it. She wants to eat big kid food, so she keeps trying. At least now she gags but doesn't immediately vomit :). She's a goofy kid. She is by far our grumpiest kiddo she's a smiley kid when she wants but definitely not an overly happy baby. Guess she's got a reason...her alter ego "Walter" still visits from time to time, but not as often. We are hoping to be discharged from most of her specialists at her year follow ups. A reason for her delays and failure to thrive was never really found. That's so frustrating for me, but I find comfort knowing nothing was found!!! So that's our update. Hopefully I'll keep up better!

Overwhelmed...

Sigh, I need to vent. These past 8 months have been a lot to take in. It's been exhausting, scary, frustrating, and down right draining. I feel silly for feeling so frustrated and overwhelmed. So many parents deal with so much more and I should be happy that for the most part Aubrey is okay, but okay is not what I want for my baby. I want to know what is wrong and how I can make it better. I'm so tired of going to specialist after specialist looking for answers only to hear "she looks good, but...". I'm tired of her being poked and prodded but no answers being found. We head back to Akron to see the neurologist and have more blood drawn for the microarray test for the geneticist tomorrow. Seeing the neurologist scares me. Even though her MRI was normal so many of her troubles point to a neurologic problem. From the low tone to the delay in integration of some reflexes to the fisting of her hands...so much looks like there is a neurologic base it scares me. Her therapists have some new concerns mainly due to the delay in her primitive reflexes integrating and her not using her hands like she should...one of the main reasons we are heading back to Akron. We added OT to her therapy regiment today. I'm happy to have the therapies to help, but the mom part of my brain just wants to pull her out and just let her be. The therapist in me knows better :). It seems like every time it looks like she is catching something happens and kind of slaps is in the face at how far behind she is in some ways. I had to fill out a Sensory Profile for her today after OT. I know the value of that tool, but filling it out for my kid sucked. She was also sent home with a sheet of things typical 8 month olds should be doing, I hate those things. I know she's behind but it put in perspective how far behind she is in some areas. I just want her to be "normal" for one thing but more delays seem to pop up every time she seems to be doing better. Sigh. We need a vacation from all things medical right now!!!

Happy Easter :)

I love holidays with the kids. It's almost like being a little kid all over again. Brooklynn was really excited for the "Rabbit" to visit this year. She insists the Easter bunny is called Rabbit and not Easter bunny. Easter morning she ran into our room screaming at the top of her lungs "Rabbit see me, Rabbit see me!!!!" She is loud on a normal day, but I'm pretty sure our neighbors heard her yelling :) The screeching did not end there...every time she or Mackenzie saw an egg they screamed before running to grab it. I'm pretty sure before they are all grown up that I will have hearing loss from all the screaming :) Aubrey slept through the whole egg hunting fun....yea my kid who wakes up all night every night sleeps through screaming banshees :) After church Mackenzie declared that Easter was to celebrate Jesus coming back to life. Then after a long pause stated "you know that's kinda gross cause I know he had to be stinky..." I tried to explain that he wasn't stinky, but she wasn't having it. Only Mackenzie :) We had fun visiting with the Easter bunny. All the girls sat on the Easter bunny's lap and smiled pretty for the camera. I've not gotten pictures uploaded yet

Busy week for Aubrey :)

She's been a busy girl this week!
-she rolled belly to back
-had her first tastes of purred food, she's not overly excited
-she started constantly babbling consonant sounds
-started playing sound games...I make a sound and she imitates
-finally she rolled from back to belly tonight.

She's a fighter and is determined to catch up :)

Zoo day :)

Perfect day to spend at the zoo :). All decked out in green except for mackenzie because "green is yucky!"

Kindergarten

Kindergarten, I'm in denial that Mackenzie starts school this coming fall. She's beyond excited and I hope she loves school. It just makes me feel old. I'm afraid of all the not nice things and stuff she will pick up, I like her being little and fairly innocent for her age. Sigh, guess I can't shelter her forever :). First day of school is august 22nd!!!

What a day...

I have decided that I hate going to the doctor! Though I guess I should be grateful because even if we got not so good news, at least we can make changes now :) So, my day started out with running late to Aubrey's swallow study. Thankfully they were okay with me showing up only 5 minutes before the test was to start. Her test did not go as I had hoped. She aspirated on every trial with the nectar thick fluids, some with full penetration. Even with a mixture of honey thick and nectar thick liquids she aspirated on the level two and x cut nipples. So, she was upgraded to honey thick liquids because using the level one nipples was causing her to take over an hour to eat which = burning to many calories = wt. loss and that's just not something we can have right now. So far it seems to be going okay. It's even more disgusting that the nectar thick...I feel like I'm feeding her nasty goo! They were all very surprised that she has not had aspiration pneumonia with the amount that she was aspirating. I'm thankful for that, but it scares me a bit! My day ended with a trip to my yearly urologist appointment to check for kidney stones and finding a stone large enough to concern the doc. So, I get to have a Lithotripsi (sp) some day in April...oh joy, I love when they mess with my kidneys. Though I guess it is better than kidney damage and a stent!!! Tomorrow we have yet more doctors appointments. I'm tired of the doctors office. What I would give for a week without seeing a doctor!

Sunny day :)

We really enjoyed the nice weather with good friends today! Kids enjoyed playing outside for hours! It sure made bedtime easier with the time change :)

Facebook...

If you are wondering were I went, I'm here but have deactivated my account for now. So much going on here at home and I need to get rid of distractions for now. When life slows down I plan to reactivate it then. I do plan to post here :)

Heather

Great Wolf Lodge

What a fun mini vacation. The girls had a blast. Even Aubrey stuck her toes in the water :). I can not wait for vacation. Love that my kids are fish!!!

Little update--be warned it's been a long day and I'm in a pissy mood!

Sorry that all I seem to blog about lately is Aubrey and all her medical crap! Unfortunately right now that seems to be what is the most time consuming thing in our home. I'm so lucky that the big girls have been so patient with the chaos all the appointments and such has brought to our house.

We had a follow up appointment with the GI doctor today. It's wasn't the greatest appointment. No weight gain and actually a small loss. She has been increasingly fussy with her feeds over the past two days. She still screws around with the bottle too much...she had been doing so much better. I know that it is possible for her to eat in a manageable amount of time because she had been doing it, but we are back to very lengthy feeds. I'm frustrated and just worn down. I hate that I can't fix my baby and that she's still not "normal". I'm thankful that other than her eating problems she seems to be a happy normal baby...her cognitive function is normal, fine motors are normal, and her gross motors are just mildly delayed. The hardest part is being challenged about what we are doing to remedy this problem. I can say with 100% certainty that I trust what the doctors and therapist are saying and doing to find us an answer. If I didn't believe it I would demand a change...I only want what is best for her. I've asked a million questions and always get the same answers...we are following the recommendations to a T. There are things that I'm not willing to do to put undo risk for further medical complications with my child. Nothing absolutely nothing will ever convince me that going against the advice of MANY pediatric professionals is the right thing to do. They are the professionals , they are the ones who deal with peds every day...they know what they are doing! When they tell me we need to do something different and can provide me with medical backing...yea I ask for reasons and backing for everything...then I'll make further changes. No I'm not getting rid of her thickener, no I'm not using rice cereal, no I'm not changing her to a Y/cross cut nipple, no I'm not starting solids...why, because there is more danger with those options than I'm willing to risk. I will not put my child at risk for aspiration pneumonia...yea they can fix it, but there are long term complications...the low wt. gain needs fixed, but scaring the lungs will not accomplish it. I'm done listening to these suggestions, until they come from a pediatric specialist. I've asked if these suggestions are a good idea from more than one specialist and have been told NO by each and every one. I've held my tongue to this point, but I'm done now. I do not want to hear it anymore. I am her mother and in the end her father and I make the decisions. I want her to be better, I want her to grow, I want her to be a normal baby...I won't put her in undue harm. I appreciate suggestions and will explore each and every one with the assistance of the doctors and therapists. I know doctors are not always right, but I have to trust that when the same information comes from multiple doctors there has to be some validation to it. Yea, it's been a long day and I'm in an awful pissy mood. Sorry...my update is more of a vent. I guess I needed to get it out before it comes out at the wrong time :)

Homemade cleaning :)

I'm giving some homemade cleaning products a try and so far I'm pretty pleased :) Here are the recipies!

Laundry Soap
Ingredients
~Tap water
~1/4 c. Fels soap grated or 1/2 Ivory bar soap
~1/4 c. Borax
~1/4 c. soda ash/washing soda

Place 4 c. hot water into 1 gal. container and set aside

Measure 4 c. water into pan. Add soap and heat/stir until dissolved. Remove from heat and add borax and soda ash, stir well. Pour into 1 gal. container and shake.

Add 8 more cups of water to container and shake.

Will resemble egg drop soup when cool. Shake well before use.
Use 1/2 c. Cost is about .01c. per wash!!!

Homemade Fabric Softener
Ingredients
~1c. white distilled vinegar
~1c. baking soda
~2c. hot water
~essential oils for fragrance if prefered

Stir hot water and baking soda. Will not disolve completely.

Slowly add vinegar-be sure to add slowly as it will bubble up!

Add oils as prefered.

Use 1/4 c.

Homemade Dishwasher Detergent
Ingredients
~1c. Borax
~1c. Washing Soda
~1/2 c. Citric acid (I ordered mine off Amazon, you can get it at a health food store)
~1/2 c. Kosher salt

Mix all together in 32oz ontainer.

Use 1 TBSP in wash

We are home!!!

After 11 days in the hospital we are finally home :) Aubrey was discharged Monday evening a little after 6pm. We were beginning to think that they were going to keep us another day when the nurse showed up...she is officially our new favorite person. We spent 7 days at MedCentral and 4 days at Akron Children's hospital. I never in a million years expected to be hospitalized for that long. Poor Aubrey had so many test run, but thankfully everything that we have gotten back has been normal so far. We are still pending the results of the Keryotyping (sp) to look specifically at her chromosomes and we will get those results at our follow up visit in about 4 weeks. She had an MRI of her brain on Monday, everything looked normal. I think that was by far the most stressful part of the hospitalization. It took them nearly an hour to find an appropriate vein and place her IV. She was so exhausted when they brought her back to us she couldn't even take her bottle and promptly fell asleep. I was very worried as she had to be NPO starting at 1am because of the sedation for the MRI and I could not wake her enough to eat. So she ended up going from 10:30pm till 9:30am the following day without eating. She was a trooper until after the test...then she let the entire hospital know how pissed she was that her belly was hungry. Watching them sedate her was probably one of the most difficult things I have ever done. It was beyond scary to put my baby's life in a bunch of strangers hands. The doctors and nurses we encountered during our stay were amazing. I am so very thankful for the kind and compassionate care we got. It definitely made being in the hospital the best it could be. I'm very glad to be home and hope that we can maintain her weigh gain so that we don't have to be readmitted...we will have weekly wt. checks to ensure she is continuing to gain. I have a feeling I'm going to hate our Friday pediatrician appointments!!! I hate to have the possibility of being readmitted hanging over our heads, but if that is what is going to make her grow big and healthy then I'll put on my happy face and do what I'm told :) She went to the hospital weighing 10lbs and left weighing 11lbs 5oz!!! The doctors decided that she was burning too much energy eating so we have changed bottles (okay so I horded all the bottles they used with her at the hospital because they just toss them) and found a med. flow nipple. So far she seems to be tolerating it well. My biggest concern is that if the formula flows too quickly that she will aspirate and we will end up dealing with aspiration pneumonia...I'm thankful that we have not had to deal with that with her being at risk due to her aspiration. Being at Akron Children's made me realize how lucky we are that our children are healthy and that being there for 11 days with nothing but good results is truly a blessing. Seeing all the bald headed children with masks on their faces, ports in their arms, and NG tubes just broke my heart. Seeing a grown man slouched on the floor in front of his child's room sobbing with the whole nursing staff was running in and out of the room is not a site I will soon forget. I do not even want to imagine what that poor family was going through. I'm thankful that an IV and an MRI are the worst things my Aubrey had to endure. I definitely hugged my kiddos tight when we got home. Mackenzie and Brooklynn handled the whole ordeal better than we could have asked. They are very happy to have us all back at home and I'm sure it will be nice to get back to "normal" life! We were both off work today to attempt to put the house back together, get some groceries, and just spend some time with the older kids! In 11 days I was only home 2x's! It felt so nice to sleep in my own bed last night. Hopefully life will settle down a bit and we can get back to our normal boring routine ASAP.

Update on us :)

Since I'm not sure when I'll be home to sit at the computer I'll try and catch up on what has been going on here! Aubrey was admitted to MedCentral hospital Friday February 3rd after failing to gain sufficient weight at home. We were admitted immediately following her follow up appointment that showed she only weighed 10lb 2oz. While at MedCentral she had a chest xray, blood drawn, and stool/urine samples taken as well as being tested for cystic fibrosis. Thankfully all tests came back normal or negative. She gained weight, just not as much as they wanted. We trialled a level 2 nipple to make feeding easier but she still struggled to manage the fluid. That has been are biggest struggle. It would be so much easier if it was just GERD, but the aspiration throws a wrench in the whole situation. After a week at MedCentral it was decided we needed to go to Akron Children's to see the specialists to see if we could get to the bottom of all of this. Thursday morning we headed to Akron Children's and it's been a crazy few days! I have never seen so many doctors or nurses in my whole life! Yesterday was nuts! We saw an OT, nutritionist, audiologist, neurologist, genetic counselor, geneticist, hospitalist, and the gastroenteralogist! So far everything is coming back normal. The geneticist wants to run a some tests to look
specifically at her chromosomes, but those results will not be available for a month. She is waiting for an MRI of her brain on Monday to rule out some causes for her global low tone. I'm not overly concerned with the low tone because we have a lot of low tone people in the family, Mackenzie and I included :). They are planning on discharging us Monday following the MRI. It has been a long 9 days and we are very ready to go home. As of last night she is up to 11lb 1oz!!!! I'm very thankful that they have been so very thorough and that so far all is okay. I have nothing but good things to say about the care we have gotten, both at MedCentral and Akron Children's hospitals. It has made one if the most stressful parenting experiences as pleasant as possible. So that's a quick version of the past 9 days. Hopefully we will be back to normal by early next week :)

What's going on with Aubrey...

She's been in the hospital since Friday morning with a diagnosis of failure to thrive. Mainly she's just not gaining weight as she should. We are hopeful to all be home on Tuesday as long as her weight is stable. I will post the whole story as soon as I can sit down at our computer and type...this typing on my phone is for the birds!!!

Busy day :)

I'm loving having more time off with the girls! Today was crazy busy :) Mackenzie and Brooklynn were big helpers all day today. They helped me finish cleaning up the play room and organizing the new cubbies. Hopefully I can keep up with the mess in that room better now that we have places to put everything. Now we need to clean out the girls rooms. They are horribly messy! Aubrey had her PT evaluation today. She's much more active, but she is still behind in all her motor sills. She will see the PT 2x per month until she is caught up. The PT said she is about 1 1/2 to 2 months behind. I'm hoping to have her rolling by our next appointment, but I've got to get her interested first! We go back to the doctor tomorrow to get her weighed and see if the changes we have made are working. Fingers crossed and lots of prayers that she is over 10 lbs. I'll be pretty surprised if she's not gaining because she surely feels and looks bigger, plus she is eating like a pig. So happy that I have another day off tomorrow :)

She is finally growing!!!

Look mom you can't see my ribs any longer!!!

Little update

Things still seem to be going well with miss Aubrey. I'm still skeptical that she's going to gain weight but I just need to be patient and pray that the medicine and new formula are helping her grow. She is much happier and crying much less. I think now that she is more content it is even more apparent how tiny she is. I put her in a new born size onsie yesterday by accident and it still fit :(. It's also now pretty obvious how far behind she is with her gross motor and to a lesser extent fine motor skills. She has a PT evaluation next week so that we can start playing catch up. I'm pretty sure she will catch up pretty quickly. She's already using her legs to push herself a bit into side lying which she wasn't doing a week ago. I'm hopeful we are headed in the right direction. I'm planning on taking her in to the pediatricians office Friday to check her weight. Hopefully she will finally weigh over 9lbs 14oz!!!

A few pictures

Aubrey update.

Just though I would update what is going on with my little trouble maker Aubrey. We've always had trouble with getting her to gain weight but we've gotten to the point were her pediatrician is fairly worried. This all started back when she was still in the hospital and lost over 11% of her birth weight. She has been a slow gainer from the start. At 7 weeks she was diagnosed with micro aspiration and placed on thickened liquids. I had hoped that would solve our troubles but that has been far from the case. We've dealt with an ear ache, colds, fifths disease, and RSV. The poor girl has become a fussy, clingy, and needy baby through all of this. She had her 4 month well baby visit earlier this week and it did not go well. She still only weighed 9lbs 14 oz and was 22 inches long...the exact same as she was at 8 weeks. Her only saving grace is that her head is still growing. She has been diagnosed as failure to thrive :( So we are on a 3 hour feeding schedule, switched her to a high calorie formula, and started her on Zantac 2x per day. Thankfully the Zantac seems to be working and she had a very peaceful day today. Her doctor wants her to take 30 oz per day. We are working on it, but we aren't there yet. She took about 23 oz today. So much better than her worst day of only 9 oz. We go back in 2 weeks to check to see how she is doing. If she's not growing then they will be running more tests and possibly a trip to Akron childrens hospital. I want to avoid that if at all possible. This whole battle to get her to gain weight and grow has been so very stressful and worrisome. I am hoping and praying that we are finally headed in the right direction! So in a nut shell that is what has been going on with miss Aubrey. :)

Walter

Meet Walter :). He is Aubrey's alter ego. Aubrey is the nice baby, who seems to have gone on vacation. Walter is the grouchy pouty faced baby that has replaced Aubrey :). I would like to chase Walter off and have Aubrey around again :). Yes I've officially gone insane, but if we don't laugh we really would go nuts!

Bath tub swimming!!!

My girls are dish. They had a blast "swimming" in the tub tonight!!!

Sickie baby :(

Poor Aubrey just can't seem to kick this RSV bug. She seemed better yesterday, but she seems like she's feeling icky again. I'm so ready for her to feel like a healthy happy baby.

My little ladies :)

All three girls on Christmas day.

As crazy as ever!

It's been forever since I have had a moment of free time. Life as a family of 5 is beyond busy but more fun than I could imagine. Aubrey was born September 9th at 4:34pm. My body decided that it was time for her to make her appearance. I was 37 weeks 4 days when she was born. My pregnancy was not an easy one and eventually lead to a semi emergent c section. My hemoglobin was really low, 7.9, following surgery but thankfully they didn't make me have a transfusion. Life with Aubrey has yet to have a dull moment. I'm sure by the time she is one I will have a full head of grey hair. She started by loosing over 10% of her weight and almost getting to spend another day in the hospital. She got a sinus infection within one week of coming home, got her better only to get sick 24 hours after her antibiotics ended. She was a really noisy eater in addition to the sinus troubles so I requested a swallow study. At 7 weeks she had a modified barium swallow study that showed micro aspiration on thin liquids. She will be on nectar thick liquids until 18-24 months. It's amazing how quickly her feeding quieted down. Her aspiration meant she could no longer nurse. I tried to pump but it was just too much trying to take care of Mackenzie and Brooklynn plus make bottles and feed Aubrey. Feeding Aubrey is a time consuming process!!! One bottle,4oz, takes upwards of 1 hour. She is kind of a grumpy baby and prefers to be held and attended to most of the time. grumpy or not we love her. She's a peanut and is still under 10 lbs at 16 weeks. I'm not used to skinny babies! She was my littlest baby at 7lb 7oz when she was born. Mackenzie and Brooklynn are amazing big sisters. Having a little baby makes them seem so grown up. I'll post pictures another day...Aubrey is fighting RSV and is requesting some attention.