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!!!