CDH Awareness Day!

Today is CDH Awareness Day!  It is not official in the state of AZ...yet. But it really should be, just like every other awareness day or month (Breast Cancer, Heart Disease, ect.).  CDH is just as common as Spina Bifida and Cystic Fibrosis. March of Dimes helps all of these babies and next year I will for sure do the walk to raise money.   These babies are very special, only 50 % of them survive this terrible life threatening birth defect.  And the babies who do survive usually suffer many complications and delays  from all the medicines and surgeries and such.  We are very blessed and grateful for our baby Whitney to be with us, here on earth.  I would love for you all to say a special prayer today for all the families who are fighting or have fought this terrible defect! Thank you!

A friend of mine brought over some used baby girl clothes for us the other day and I found a turquoise ish shirt in the bags of clothes!  I was so happy because I've been searching for this color of shirt for today.  Then today I had the idea to write on it...CDH Awareness Day March 31, 2011. the back says...For Whitney RCDH & ECMO survivor 7-21-10

 Whitney wearing her last minute make shift turquoise CDH Awareness Day  Shirt!

Mini Golf & 8 months old!

As predicted, this has been a crazy busy week!  My sister came home for spring break and it was really good to see her and hang out!  Tuesday we went to Kelley for some speech therapy and craniosacral therapy.  She is a really good therapist so I decided to stick with her and not go back to see the one in the feeding clinic at Phoenix Children's Hospital (PCH).  Whitney doesn't need 3 speech pathologist!  We also saw Dr. M. the GI and there Whitney weighed in at 14 lbs. 6oz. Only gained 3 oz in one week so he is still very worried about her weight gain and want to do the endoscopy procedure.  I want a second opinion! But I'm also okay with doing the procedure to know for sure what is going on inside of her...reflux? GERD? something else? But before we do that the therapist strongly suggest that we do an allergy test first.

Thursday Whitney got her last synagis shot of the RSV season. There she weighed 14 lbs. 10 oz.  (every scale is different). I'm glad she got these shots because she never caught that life-threating disease.  I think it also helped that I kept inside the and out of public areas the whole season.  But now that April is coming I'm bringing her out!  Went to Babies R Us with her for the first time the other day!  Of course I still kept her covered and away from people... I don't mind them seeing her but I don't want thier germs!  Oh and every time she sees some one new she gets really scared and cries.  So just a fore warning. 

Friday we had her physical and speech therapy which went really well.  They are very happy about Whitney's progess.  Then we went to the Pediatrican for a check up.  They see Whitney every 2 months instead of the regular 3 month healthy check up.  She weighed 14 lbs 12 oz.  Ha ha. I really don't think Whitney gained 6 oz in 3 days!  So the real test is going back to the GI's scale that we weigh her on once a week.  They checked her iron levels which we perfect, not high even though we give her the multivitamin with iron in her Goat Milk Formula.  They also did a TB test (lung disease) which I don't think she has because there is no red bump on her arm where they give it to her at. 



Mini golfing with Tim, Jessica, Colton, Clayton, & Brianna







Jessica taking a pic of Brianna drinking soda...? Colton, Clayton golfing, Mom & Dad





Family Photo at Castles ~N~ Coasters Mini Golf



 

Whitney sitting peacfully on the couch until...




Her ball rolls off! Oh No! Don't worry, I caught her!



Whitney sits up perfectly and she crawls pretty good now.  She loves to roll around but that makes her get caught up and twisted in her oxygen and feeding tubes.  She reaches for everything so I've always got my eye on her.  I love to make her smile and laugh!  If we are not at a Dr.'s office we will play together and learn sign language and sing songs.  Whitney takes two naps lasting 2-3 hours. Wakes up at 7 or 8 in the morning and goes to bed at 9 PM.  She take 2 - 3 bottles a day (she only eats when she's asleep).  I put her at the table and try to feed her solids 3 times a day (she only takes a few bites). I also give a sippy cup and she recently figured out how to suck from it!   So far she's taken carrots, bananas, avocado, sweet potato, peaches, melons, and tomorrow I will try butternut squash and buy more veggies to puree for her like peas and green beans.  That is what our eight month old does these days!



Whitney is eight months old



Whitney 8 months old









  That blue box in the back ground is the oxygen concentrator that makes air into pure oxygen.  It's nice back ground noise and it's very quiet if it's turned off.  Whitney probably threw up and that is why she is naked!  She is hooked up the to feeding pump in this picture. 





Loves to stand up and does pretty good pulling her self up already!

 





How to explain the stuff she's on

It's definitely getting warmer here in Phoenix!  It reached the 90's and it's only mid March!  I think February has perfect weather for us! We like to take Whitney outside as much as possible but lately she's been tethered to her feeding pump pole.  So that is no fun for either of us, being stuck in that room all morning.  But we do have help from family and friends. But only few people know how to work the feeding pump and know how to make her bottles and everything else that this girl needs.  Thomas and I are able to go out on dates.  Two weeks ago was our 4 year anniversary!  We're so old...ha ha!  We went out to eat at Chili's. We're planning to go to Out of Africa one of these Saturday's that we're not busy!  We are also able to go play racquetball every Tuesday!   Yesterday I went quading with my dad and brothers.  That was really fun until my tire popped! We went home early.   We are very grateful and we can't wait to be able to take Whitney to places with us!  We actually to her to our church building last Sunday evening while Thomas and I were getting interviewed for our Temple recommends and she did really good.  Hardly anyone was there but a couple people asked us what she was on pointing to her face.  So I explained about the oxygen and the feeding tube.  I wonder if it would be easier for me to just say was it is before people ask, I mean, I know they are wondering and may feel awkward asking.  But they want to know, so they do ask and of course it's not offensive to me at all.  I'm obviously use to it but no one else is (just never thought about it before this). I'm sure every one at church already know about it but they can ask if they want.  I think in public I won't say anything unless people stare. We're perfectly normal when we go to Dr. offices of course! Lol. Because everyone there is either having feeding or breathing or GI problems! 

Father and Daughter




Mother and Daughter


Our favorite place to take pictures is on the couch.  Every morning we I get her up and dressed, I take her out and set her on the couch and take a few pictures of her.  I love this girl so much!  I love being a mother!

Chillin' on the couch playing with my favorite toy

  This past week has been busy and relaxed!  My family went to Universal Studios for Spring Break so I was home alone with the baby and Grandma.  We survived!  Thomas came home from work to help out instead of going to the library to study all night so that was really nice!  When they got back every day felt like a Saturday!  This next week is completely booked with Dr. appointments!  Five in all, including speech and physical therapy, GI, synagis shot and pediatrician.  I have a feeling Whitney will not eat very well this week either!  I'm really glad she is getting the synagis shot to prevent RSV, especially since we will be taking her to church in April.  I don't think she is ready for immunization shots though because she had a really rough time with them back in Jan.  We can definitely wait till she's older and stronger to handle them.
   
And just a heads up... we did get the Cardiac Cath scheduled for April 6th.  I really hope this fixes the problem and that Whitney will do really good with it and that I can handle it too.

Whitney's wearing her new sunglasses here, they fit really well and should last all summer except that she was crying the whole time they were on her!  Hopefully she'll get use to them!


Sporting my cool shades

  Also we have a date set to do her baby blessing at church. It's on April 17th and everyone can come!  It's at the Acoma Building on 79th Ave and Acoma (across from Centennial High School) at 9AM.  This is not a baptism or christening, it's just an opportunity to give her a name and a blessing in church.  Usually we bless them as newborns but because of Whitney's situation she was unable to do that.  So she is pretty big and most likely will cry but that's okay!  I'm just super excited to have her blessed!  And a friend of mine, Abbey, is making her blessing dress!  Yay!  We picked out the fabric together, it will be so cute and original! It's fun to finally buy her church dresses also!   Whitney is getting more mobile everyday. She can crawl and reach or anything she wants but mostly she wants to stand up and lean on the couch or me.  She can actually pull her self up with some assistants!  If she's crying sitting down, I just pull her to standing and she's so happy, spitting and babbling! Whitney is about 8 months old now! 


Happy St. Patrick's Day!



Answered

I don't have my pictures with me but I at least wanted to write.  For months (and practically forever) I've been praying for Whitney to get better (with feeds and breathing).  Of course realizing the hard way that it is all on the Lord's time.  I really didn't want to do the cardiac cath and when we went to the cardiologist the other day Dr. P. said she looked really good but not great.  So even though my prayers were answered about her getting better she stills needs the procedure to help her out more.  And I'm okay with it now.  I know it's weird but the problem can't magically fix it self and that is why Heavenly Father gave us Dr.'s and technology.  The sooner we do this the sooner we can ween Whitney off the oxygen.  Which she gets so tangled up in when she rolls all around the floor, I'm always unwinding her!

The Pedatric Surgeon appointment this week went well too.  We waited an hour to see her but she is such a great dr. and person.  She doesn't think Whitney will need a G tube but I don't think she realized how bad it really is.  The past two days Whitney refused the bottle every time so I've had to do a slow drip.  I don't if it's all the Dr. appt messing her up or her little cough or that we added super soluble DuoCal to increase her calories.  I recently understood that the main reason she can't eat is because she couldn't for the first month of her life.  When other babies sucked instinctivly, Whitney was fighting for her life.  Eating is a learned habit.  Once babies realize they have a choice not to eat then they just stop because they don't like it or they gag and throw up.  Even though the Dr.'s say its okay if she throw's up I'm trying my best not to give her so much a one time so that she doesn't completely hate eating.  Took me a while to be patient with her and revolving my days around her feedings but it's critical that she trust me.  Anyway just wanted to write down my thoughts.

New Speech Therapist

We went to a new Speech Therapist the other day because she also does Craniosacral Therapy.  Umm, I'm not exactly sure what it is...just some touchy feely stuff that my mom wanted to try so we'll see if it works.  The therapist was really nice and did things that nobody else has done yet so that's definitely a plus for me.  She noticed lots of things that we didn't yet tell her. Next time she will do the craniosacral therapy along with some feeding therapy.  Luckily ins. will pay some so we'll go once a week (yay) out to scottsdale.  We'll try it for 5 or 6 times before we decide if it's beneficial. She said to let Whitney play with wet things like her foods on the tray and water.  Whitney doesn't really seem interested in it and if she's like me she will hate it! Haha.  I can't stand when 'wet' things get on my fingers...ketchup is the worst. When I was younger I wouldn't do my handprint in paint or play with play doh. My mom gets all the chicken off the bones and her fingers are all gooey and I could never do that, I couldn't even watch!

The other night Whitney threw up the feeding tube, at least it came out her nose and not the mouth!  We went a couple days with out it and she didn't do very good.  So today I put it back in and now she's back to throwing up.  I'm surprised she'll still take the bottle after months of throwing up. I know that when I throw up I don't want to eat and especially not that food again!  I don't know why the Dr.'s say it okay if she throws up.  They don't want her to but just say she should throw up less! Ahhh...



Whitney eating a Mum-Mum




Happy Birthday Uncle Derek!