Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Friday, December 31, 2010

Christmas Day

Every Christmas morning we wait upstairs till dad is ready with the video camera. (This year Thomas joined him). Then we all walk downstairs, turn the corner and see what Santa brought! We opened up our stockings full of candy and fun. Then we ate cinnamon rolls and drank hot chocolate. Then we 'gratefully' and excitedly open up our presents!

It may seem like I'm posting a lot of pictures but trust me, I took way way more! I'm just posting a few pics of her presents to show family members. Here she is in bed, Christmas morning playing with her favorite "toy", that's always handy!

Grandma Patterson custom made and personalized these hooded bath towels! So big and soft!



Grandpa & Grandma Montgomery got Whitney a ton of cute clothes! All the way from Hawaii!


Aunt Mindy made her some niffty bibs made of, well, a bath towel (or a kitchen towel), and she made some cute slippers! By now Whitney fell asleep with all the excitement!




Baby Girl also got tons of toys from all of us, including her grandparents and aunts and uncles! Whitney also got some books and some music too! They were all very generous to her parents as well! Thomas (Keaweiwi) and I got video games, Blu-ray movies, blender (for baby food), candy, movie passes, and money. Thank you to every one for giving us the best Christmas and for understanding our situation.




Just love her gummy grin and full head of dark hair with natural highlights! Hoping to get ride of the tubes and tape on her face soon, like 3-4 more months! She is such a happy girl! Always laughing and smiling at every one doing a funny face or noise! She loves smiling for the camera!


The day is over, time for bed. Now she gets to entertain herself to sleep! She got two crib toys! This one she kicks and it lights up and plays music and one that plays music and moves.


Whitney was still throwing up on Christmas so we didn't take her over to Gr & Gr. Holmgrens. Keaweiwi and I went there to celebrate with them in the after noon. They always go to Harkins to see a movie. This year we watched Tron. Then we hung out with them and Kehau & Ikaika & Jeff till we had a delicious ham dinner. Very eventful day! Back to our place (my parents house) to finish the day.

Wishing you all a melekalikimaka ame hao'oli makahiki hou!

Christmas Eve

Here are some adorable pictures of Whitney! Whether she be your granddaughter, great granddaughter, niece, cousin, or friend! We had a great Holiday season with lots of family and friends and love, and of course Santa was very good to us!




Here's Uncle Colton making her smile! Whitney loved chewing on the wrapping paper! She did a pretty good job unwrapping her presents with mommy and daddy's help.



Whitney likes to be snuggled in this postition with her pacifier and reaches up to our faces and grabs chins and puts her fingers in our mouths sometimes too! Or she'll grab a necklace and play with it!



These three thing are what she got on Christmas Eve. It's sorta tradition to get a new pair of Pajamas and slippers or socks on Christmas Eve so we can wear them the next morning. Whitney's P.J.'s say Baby's 1st Christmas and it has reindeer feet! Above that is an ornament that says Proud New Parents on top with a little snowman family and the heart says Whitney's 1st Christmas 2010. Then of course she also got a keepsake stocking that has her name sewn in and again says baby's first Christmas.


my mom also got Thomas and I some fleece pj's and some slippers! Before opening presents, it's also tradition to watch the Nativity movie and read about our Savior's birth in Luke 2. We had a lovely evening. Also, afterwards, me and my sisters always watch Jim Carrey in The Grinch! Jess was working but me and Brianna and the boys still watched it! Fun Stuff!



Saturday, December 25, 2010

Thursday, December 23, 2010

Continuous Drip

Here Whitney is five months old! Yay! She's sporting a pink blanket in her swing. She keep's getting her clothes dirty in puke plus it's not cold here, at all!





Whitney has not been tolerating the feeding tube since she's had it. She has thrown up two to four times a day. Of course I called the GI Nurse and the Nutritionist, saw the Pediatric Surgeon and they all said she was okay. Then we went to see a GI Nurse Practitioner and she said that Whitney did not gain weight and that she needs to be hydrated. She said to do a continuous drip and see if that helps...if not then go to the ER because it's over the Holidays. SHe also reccommended an X-ray to make sure the NG tube was in the right place, so we did that. It was in the correct place but with all of Whitney's throwing up she aspirated and they could see it on the xray, hopefully that will get better and she'll cough it all out.


A continuous drip is were we set the feeding tube's pump to constantly give a small amount of formula all day and night and no bottle. Sheeesh and I thought we were immobilized before with just the oxygen, now poor Whitney is stuck to a pole! Well, at least she can't go more than four feet away from it.
So far it has worked because Whitney has not thrown up since. I'm not sure how long she needs to be on this cycle for. Hopefully not long so she doesn't develop even more of an oral aversion, just long enough for her to get better. Even with all this, Whitney is still a regular baby, growing and learning every day. She just amazes me! When we laugh at her shaking her head, she keeps doing it because she knows that it's funny.


It's been another one of those weeks...DR. visits all the time. But I did manage to go to my husband's graduation thanks to my mom. Thomas wanted her to go but um... someone has to stay home with Whitney. But Thomas's mom and sister came! They bought him some lei's! I bought a bunch of big balloons the night before and hide them in the Jeep under a dinosaur sheet. One even got lose on the way there and he didn't even notice! Ha I thought for sure my surprise was ruined! So, before graduation was over I walked a mile (or less) in my boots to get that huge bunch of balloons . He was definitely surprised! Afterward lots of pictures and tons of traffic, Thomas's mom treated us to Pita Jungle! Thomas also got a few 'congrats grad' gifts from other family members. Thanks!












My mom celebrated her..... birthday on Sunday the 19th. Brianna and me made her dinner with Dad's help at the grill. OH, that morning, Whitney pulled out her NG tube! Very early Sunday morning, after feeding her, an hour later I heard her sneezing, like eight or ten times then she cried. I jumped up and saw that feeding tube flying around! Ahhh! She must have pulled the tape off her face and sneezed out the tube! I left it out that day to she if she would stop throwing up but she still did. The next day went we went to the Pediatric Surgeon, whom we love! She helped me put it back in. It's not that bad or hard, but I don't want to do it at home unless I have to.






Last night it poured! Yay! Thomas and I were able to go on a date. We went to Claim Jumper! Delicious! Funny story (to me anyway). The only reason why we could go there was because we had a gift card right. So we're talking and talking and Thomas paid the guy, I asked if he used the gift card and then he got this really serious look on his face, and I'm like "haha! your joking right!" And he just shook his head with this wide eye face. I still though he was joking. Then he pulled the gift card out of his wallet! He was so embarrassed but finally got up the courage to ask the waiter to give us our money and use the gift card. I love my husband. One time when we were driving home and talking a lot he missed our exit. We were on the I-10 going to get on the I-17 and he kept going! I was all "wahoo we're going to Cali!" But no, he took the next exit and then back tracked. He claims, "I was just taking the scenic route."

Here's Whitney K. all settled in for her first night of the continuous drip. You can see the bag of formula, the pump, the oximeter, her mobil and toy and of course the precious sleeping baby on her inclined crib. With our bed and the window in the back ground.



Anywho, I hope every has a very Merry Christmas! We'll sure try! And hope and pray that Whitney does better eating and doesn't get sick and end up in hospital for the four time.


Tuesday, December 14, 2010

Post # 70!

Grandma's Cutie! That day we went to the pediatrician for some shots.




If you haven't heard...we are home! Whitney got released Monday afternoon. It's been a crazy day but I didn't want to leave any of you hangin'. Some people have texted me about Whitney or talked to my mom, but we are home, safe and sound.





Like I said previously, we got admitted Friday 12/10 to PCH, after the Pulmonary appointment, for Whitney to get a feeding tube. So then on Saturday we basically hung out in the hospital with Dr.'s and nurses in and out all day making plans and getting her food. They made sure that she was seen by every Dr. necessary and that every one was on the same page. They were all really nice...if any one out there wants to be an RN then go for it! They are amazing people and so helpful! All the nurses and even Dr.'s kept saying how pretty Whitney is. They loved to rub her hair and make her smile.
Thomas stayed with Whitney so I could go home and shower and sleep. My mom helped so Thomas and I could go out to eat! We went to Stir Fry Paradise! Yum!





I spent every night there with her, putting up with the hard couch and the baby next to us crying in pain and his poor mom trying to get him some morphine. That baby's dad and grandpa were the loudest snorers in the world! I could still hear them with my ipod on, I don't how Whitney slept though it but she still didn't sleep well. I definitely made sure the Dr's were doing every thing they could to get us out as soon as possible.


On Sunday Whitney was doing really good. Dr. R., the hospital's pediatrician ordered all the tube feeding equipment for home, including a pump and bags and tape and extra NG tubes. The nurse Joe also came to the hospital and showed us how to use every thing. He kept saying how pretty she was and that he's seen tons of babies and not all of them are pretty. Through out the few days me, Thomas and my mom learned pretty well how and when to use the NG tube. But the main thing I had to do was insert it myself, with help holding her down.
Before and After pictures of Whitney. She's doing good with tummy time and likes to roll over (hard to do at the hospital). I just love her personality!




On Monday, every thing was figured out, like how much Whitney needs to eat to gain weight at a good pace and how often to feed her. My mom came to the hospital around eleven am, I went to eat some breakfast at lunch time. FYI hospital food IS delicious and cheap! When every one (me, mom, Whitney and the nurse) was already (Thomas was at work), we inserted the feeding tube. Mom said a prayer and I was comforted. It actually went pretty well considering. Oh a plus about this tube is that now I give her the medicine through it! That morning some volunteers came in our room to give the babies a stuffed animal. I picked out the penguin for her, it was the cutest. Whitney loved it, I danced it around saying happy feet and kissed her with the beak and told her all about penguins. So a few hours later we were home free!




I do think that Whitney needs this feeding tube. No one can be so sure as to why she isn't eating much and losing weight. So this will definitely help her grow, get strong and healthy. It's only temporary. Remember how I was complaining that nothing was easy, well haha, it just got worse!


My day now consists of feeding Whitney every three hours but it really takes at least one to one and a half hours to get her fed! I try to feed her by bottle first if she takes it great but she'll only take like half. So I have to tube the rest which take forever, there's seven steps which I won't bore you with. Plus she needs to stay sitting up for thirty minutes afterwards. But hey once a day she take the bottle in ten minutes! So then I have two hours to play with her and then she'll fall asleep. Then I do things... mostly phone calls and cleaning.


Well, let me just say that Whitney is a hand full but she is the best thing that has ever happened to me, us. I savor every smile and giggle. Every cute noise and cuddle. This picture is for cousin Jeremy!

Friday, December 10, 2010

Failure to Thrive

Alicia writing here on my green dell netbook from a dark hospital room. With Whitney in the crib by me and an 11 month old roomie and his parents. Luckily there's wi fi.

it has been a really long day. Left the house at 10:30am for a pulomology appt. They saw us at one pm due to some misunderstandings. Dr. D. and the nutritionist were very worried about her feeding. It has been getting worse since tuesday and of course the slow weight gain. They did not want us to go home without the feeding tube. We were NOT expecting this, maybe in a couple weeks if she didn't do well on the new med and increased calories. But here we are.


we were admitted around four pm. Thomas got here with overnight stuff and dinner at around eight pm. Then the nurses put the NG tube in, through her nose down her throat into her tummy. Whitney hated it, poor baby could not stop crying. Shortly after they took her blood and she cried for a good hour in her grandmas loving arms till she finally fell asleep.

This is definately a new a scary thing for us but it will be the best thing for Whitney. She needs to catch up and grow, getter bigger and taller and just be a happy eater. No idea how long we will be here at the hospital for, hopefully no more than three days. And don't know how long she will need this feeding tube for. So that is my update. I'm sure I won't get much sleep tonight.

Wednesday, December 8, 2010

Feedings and ME

Sorry this is just a boring blog about medical stuff now a days...Just a quick update about our G.I. appt yesterday. DR. R. said that he wants to start her on another medication to help her esophagus coordinate better (making her aspirate). Also he wants her calories increased to 27. It was 24 calories, most babies are at 20 calories, preemies need more too. And keep doing the thickened formula with rice or oatmeal cereal. He wants Whitney weighed once a week to see if/make sure she gains weight. If the new med doesn't work plus the increased calories then the only other option is the feeding tube. I hoped she'd progress in her feeding but she's getting worse, her insides just aren't normal or working properly. Poor thing, it's frustrating but I know it's not her fault so we just keep trying.


random story...I was driving to pick up Whitney's meds in Sun City. You'll probably all hate me now haha, because sometimes I'm THAT driver. I cranked up the music so loud with my windows rolled down. (Adam Lambert's What do you want from me). Speeding along. Singing/yelling. Of course someone had to cut me off and I hooooooooooonked, but I couldn't even hear my horn because the music was so loud. hehe. I don't know, it's just how I can let out the stress in me. Adrenaline rush. That's my 'outlet'. Some people scrapbook, or sing or dance or sew. Like I use to go quading all the time. Every Saturday all year in high school. Also wake boarding got me out there having fun. It's the only reason I survived. If you didn't know I have been skydiving, glider riding, hot air ballooning, white water rafting. I also love to ride my bike and play racquetball. I also like mini golfing and bowling and swimming and hiking. Use to love tether ball! Haha, that was a good outlet. Well, even though I'm a mother now, I still crave all those things. My husband is the complete opposite!

Monday, December 6, 2010

Wish List

Sad day. Went to the pediatrician to get Whitney's shots. She weighed in at 11lbs 5 oz. Last week she at the Cardiologist appt & then the Synagis shot place she weighed 11 lbs 7 oz. Two weeks ago she weighed 11 lbs 4 oz. Whitney lost weight. Sad, but we have an appointment with the GI doctors tomorrow to address this issue. 4% she's barely on the charts. She was not eating very much, maybe 2 oz a feeding. Babies her age should be eating 7 to 8 oz a feeding. Thomas and I fasted for her to eat better. I sincerely prayed today that she would and so far so good, we'll see though. I thanked Heavenly Father.


Here is a really big happy grin she likes to give me when I smile at her.


I received the Simply Thick in the mail today. It was the Wrong kind! They gave my honey instead of nectar. ugh. They say I can dilute it by doubling the formula for one packet and then splitting it up in to smaller amounts. I just wanted one thing to be easy but NO. I just feel like crying all the time.


The other day we took Whitney to see Santa Clause! We dressed her up so pretty. I really wanted to send out pictures but we just can't. But you know you can always copy these pictures on our blog to your computer and print them! Print a wallet size to show others or a bigger one for your fridge!










So this is mainly for my family which is why I'm going to up Whitney's Christmas Wish List. Everyone can see it though but don't feel obligated to get her or us anything! http://www.amazon.com/ click gifts & wish lists. Type my email address which is ARM3907@yahoo.com . It's basically needs and wants, again don't feel obligated but it's just a good idea list if you wanted to get or send us something. Everyone has been so generous already.

















Otherwise we are doing well. Semi normal baby stuff is all good, like the drooling and chewing, crying and laughing, sleeping and eating, rolling over and playing. I'm not doing anything to special other than being a mother. Thomas is graduating from ASU this month with his bachelors!