Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy 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! click gifts & wish lists. Type my email address which is . 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!

Tuesday, November 30, 2010


19 Weeks Old

Yesterday, a cold windy morning, we went to the cardiologist, Dr. P, at St. Joe's . Whitney endured another echo cardiogram (ultrasound of her heart). The results of increasing the oxygen had helped her, not sure if it's the pulmonary hypertension or high blood pressure because she has both and heart stuff is a little confusing to me. The pressure was (last week) moderate and now it's mild. Maybe one day it will be normal.
Basically, the artery from the her heart to her left lung is small and crooked. They cannot see lung on ultrasounds (which we all know already because before she was born they didn't know how much lung she had, you can only see it on like an MRI which is how they knew that they were both small, one worse than the other).
So the Dr. said he might need more information in the future or next 6 months. Meaning some scary options: MRI, CAT SCAN, or doing something with a catheter and some dye to see how things are working and possibly fix the problem, and for that they would put her to sleep and intubate her. Let me just say now that I am praying that that will not happen. If it were my choice I would never ever let that happen again (or anything requiring hospitalization). Praying for another miracle that her heart will be healed on it's own.
From my understanding this is not life threatening (her heart problems) and that she just needs to grow. She now weighs 11 lbs. 7 oz. You grow girl!
Whitney needs to stay on the 1/2 Liter Flow of oxygen for the rest of this month and we'll go from there. Dr. P. wants to see her end of this month. He's says that if it becomes impossible to keep the nasal cannula on her face (babies pull it off), then he might put her on meds. The tape to keep the nasal cannula in place makes her face all red and sore. They gave me a sample of a better tape that lets the skin breathe but of course it's not a prescription so insurance won't pay and no pharmacy has it. It's called Tender Grip and it costs $50 for 25 pairs! $2 bucks a pair! $1 each! I change it every three days. Crazy! I'm sure every mom has this problem of finding good tape to put on baby's face....
Also this month we have the synagis shot to prevent RSV, pediatrician appt. to get 4m shots, G I appt., Pulmonologist appt. some Physical and Speech therapy, PLUS baby's first Christmas!

Friday, November 26, 2010

Baby's 1st Thanksgiving

Happy Thanksgiving! We had a wonderful time with my husband's family. Mom Merry made a delicious thanksgiving feast for all of her children to enjoy and to be with each other.We played Apples to Apples! Well they did anyway. Whitney did really well over there too. She even laughed for them!

Wednesday, November 24, 2010

Increase the Oxygen!

The past couple of weeks have been busy, as usual, with our little bundle of joy. Whitney is growing and getting bigger and funner everyday. Whitney is 4 months old!!!

I've been trying to write since Sunday! Sorry! And now both of my sister's are here so I'll go hang out with them soon! I just wanna write a little update.

We went on another little walk! It was cool in the shade and warm in the sun. Thanks to my little brother, Clayton, we got some cute pics! Not sure if we'll go again though, getting chilly and really dry outside.

Thirsty?..... Heheh nope! She had fun though!

Well, this is her thing now, she's very comfy when she puts her right arm up. She does it wherever is laying! So cute! See, she's got a couple tiny fat rolls!

This was my rocking chair when I was little! Whitney's sitting up in it pretty good! Yes, she has a ton of tape on her face! She just keeps pulling it off!

Last week Whitney, me, and my mom went to Phoenix Children's Hospital for a Modified Barium Swallow X-ray. This was a terrible experience for my poor baby. They sit her in a little bumbo like seat with a little apron on and buckled her in. I stood there with her oximeter and oxygen wearing a lead apron. The X-ray tech helped hold Whitney's arms down. She was screaming and wouldn't take the bottle of barium, obviously, so we had to syringe feed it to her. When it was the consistency of her formula, she aspirated. Then they handed me another syringe with it thicker, a nectar like viscosity, and it went right down. The speech pathologist then recommended that we feed her the nectar viscosity. We either do it by mixing her formula, already 24 calories, with rice cereal or oatmeal cereal. Or we use some expensive gel called Simply Thick. We've been using rice and now oatmeal, we have to grind it up to a powder because the flakes don't go through the Dr. Brown system. Took us a while to get it right but Whitney seems to really like it. She's not eating more, in fact maybe even less amounts at a time but she's getting more calories with the cereal. I'm not planning on starting solids this early but maybe in a month since we've had to thicken her formula. I should get busy learning how to make baby food! Any advice?

Owner of Mommy's Heart! For Sure!

Also, Last week the Physical Therapist and the Speech Pathologist came to work with us. Not much new there. They will probably come every other week! Whitney's doing pretty good with tummy time and will once in a while roll over by her self with out crying!

Awww, reading The Rainbow Fish to her giraffe!

And she eats The Rainbow Fish!

Then last Friday, when I took off Whitney's tape on her face, her cheek was really red and looked really sore. Poor baby girl. So I called the Dr. and they wanted to see it of course. It smelled because it was retaining some water from a bath the other day. So we had to go in and the nurse practitioner said to let it air out and put some Aquaphor on it. They weighed her and she was 11 lbs. 1 oz.

Can't skip a Sunday! Love going to Church! Thank you Dad for taking care of Whitney for us! Next week is my turn! Whitney turned 4 months old! She's always grabbing at what's in front of her and putting it in her mouth and chewing on things. And she is drooling everywhere! Teething! We also went to Grandma & Grandpa Holmgren's! Whitney's first time to go there! Of course making sure no one is sick and that they don't crowd around her. We had a really good time and Whitney did good too. She was talking very loud at one point when everyone else was, it was so funny. And Thomas's brother Jeff came from San Diego! We didn't think he was coming but he surprised and said he moved to AZ! I'm so glad because now he won't be the mystery uncle to Whitney! Hahah.

So Monday was the Big Crazy day for us. First we went to the Pediatrician for the 4 month well check and immunizations. Whitney now weighs 11 bls. 4 oz. yay! she gained 3 oz in 3 days! The pediatrician, DR. K. is getting to know Whitney better so I think she's doing a good job. She seems to be on top of things now. And when she noticed Whitney grunting and her heart murmur a little stronger than usual, and I told her she has been sat ing at 95-97 and not the norm 100, she was concerned and sent us right over to the cardiologist, (Dr. R. was not there but we found to like Dr. P. much better).
So we went home for a minute to get Grandma Barlow's lunch and some more food and an extra oxygen tank for Whitney, then headed off for St. Joe's. They got us in right away and did an ultra sound. Bunch of technical words and stuff, crooked something, but ultimately her pulmonary hypertension was a little worse. They sent us over to the hospital for a X-ray. We had to walk by the NyICU Annex so I was trying NOT to think much about it, so that I wouldn't cry. Waiting to get the X-ray taken took forever! But Whitney did pretty good. Poor thing was so tired and couldn't get sleep or eat well that whole day. We went back to the Cardiologist, Dr. P., they did another ultrasound and wanted to test increasing her oxygen! She's on 1/4 L. flow and we cranked it up to 1 L. So then the Dr. decided it would help her to be 1/2 L. flow, which is double what she was on! Darn! Complete opposite of weening her off but whatever will work to help her out! He showed us the X-ray and said that her lungs have grown! It's looks much better than the last one taken on 9/18 in the ER. Yay! So that whole Monday, we were at Dr's. from 9:30 AM to 5:30 PM!

I was born at St. Joseph's Hospital!

Also Thomas and I have fun sometimes too thanks to my mom who takes care of Whitney for us! I'll talk about Bowling and Mini Golfing later though!

Sunday, November 21, 2010

CDH Awareness

Information and the History of Congenital Diaphragmatic Hernia (2008 reprint)
Originally posted by CHERUBS in 2008...

History of Congenital Diaphragmatic Hernia-

Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by trauma.-

In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male. Miraculously, this man lived 24 yrs with CDH in the 17th century.

- In 1701, Holt reported the first case of CDH in a child.-

In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.

- In 1827, Cooper described the symptoms, pathology and classification of CDH.

- 1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.

- In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical Observation.

- In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.- In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.

- In 1902 the first reported successful operation of an infant born with CDH

- In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.

- In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.

- In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.

- In 1989, Michael Harrison led the team at the UCSF in the first successful open fetal surgery for CDH.

- In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays

- In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia

- In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.

- In 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information and research options.

- In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.

- In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.

- In 1997, the first on-line information site for CDH was created by CHERUBS.

- In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF

- In 2000, the first international conference for families affected by CDH was held in Orlando.

- In 2007, the Association of Congenital Diaphragmatic Hernia Organizations (ACDHO) was formed.

- Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness Ribbon was created by families of children born with CDH to help raise awareness and research of the birth defect.

- In 2007, the first on-line forum specifically for CDH was created

- In 2008, CHERUBS created the first web site dedicated solely to free access of information for research of CDH.- Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia. Whether it was Congenital is not known.

- CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by The CDH Study Group. The survival rate is still 50%.- The cause of Congenital Diaphragmatic Hernia is still not known but it has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.

- Is has been suggested in some medical journals, but not proven, that thalidomide, quinine, phenmetrazine and nitrofen may cause CDH. A Vitamin A diet deficiency is known to cause CDH is lab rats.

- 20% of CDH pregnancies also are diagnosed with polyhydramnios, an over abundance of amniotic fluid
In CHERUBS Membership:

- CDH has both occurred and not occurred in identical twins.
- We have many set of fraternal twins with one baby with CDH and the other healthy
- 3 families out of 2500 have had 3 children each with CDH. The reoccurring rate of CDH in siblings, without any other birth defects or genetic anomalies is 2%
- Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 yrs old.
- 3 of our members, all male, have had 6 CDH repairs each.
- CDH has been diagnosed inutero as early as 10 weeks for several of our members.
- Many of our adult survivors have gone on to have healthy babies and pregnancies of their own. Only 2 families have both a parent and a child born with CDH.
- Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.

July 21, 2010, 3:09 PM, 6lbs 10 oz, Whitney Kaholumehekainani Montgomery, diagnosis: Right-sided CDH with the Liver and Intestines UP. 20% CHANCE to survive.

September 14, 2010, 8lbs 14oz, 8 weeks old. First day home from hospital. happy & humble parents Thomas Keaweiwi & Alicia Renee Montgomery of Whitney Kaholumehekainani Montgomery Right-sided CDH & ECMO Survivor.

Thursday, November 11, 2010

Picture Time!

Hey everyone! It's been a couple weeks! All is well in the Montgomery/Patterson household! Whitney is as cute as ever! She absolutely melts my heart! I'm on my moms computer because mine is not really working. Which stinks because blah blah you probably don't want to hear about finances, ha, we are all in bad financial situations I'm sure. You know, paying for our million dollar baby and all! But it will be even hard now to do my church calling which is making the sunday program, also because we don't have the program any more ( it was a beta version of publisher). Ha, but that's enough about us! THis is Whitney's blog.

Last week we finally got in to see the G.I. Dr. M. Before we saw him though we tried out Colic Calm, which is suppose to help with reflux also. It worked for 2-3 days but Whitney was back to screaming every time I tried to feed her. So, the G.I. said she has severe reflux, it's silent meaning she doesn't spit up. Gastroesophageal reflux disease (GERD) is a condition in which the stomach contents (food or liquid) leak backwards from the stomach into the esophagus (the tube from the mouth to the stomach). This action can irritate the esophagus, causing heartburn and other symptoms. Whitney was in a lot of pain and I've been trying to help her for weeks but Dr. offices are so slow! Dr. M. prescribed Prevacid, saying that Zantac is not strong enough for her. She's been on it for a little more than a week now, and it seems to be helping. WHitney is so much happier now and doesn't scream at the bottle. She still does have oral aversion but eventually will learn that it won't hurt her anymore.

Last weekend we all went over to my sister's house (Tim & Jess) to celebrate my sister's (Bri) Birthday. This was Whitney's first real outing! Dr. offices don't count! Ha. It was really fun. We brought the oxygen concentrator and her little swing. Jess doesn't have a couch yet (on it's way) so everyone decided to lay around Whitney, dad is really asleep. Thomas eventually fell asleep while me, mom, and my sisters played a game. Whitney had fun too, and slept the whole way home.

My mom's younger sister, Renee (whom I'm named after), came down from Las Vegas to visit Grandma and us! My mom has 9 siblings, she is second youngest, then Aunt Renee. That day we also went to the Pediatric Surgeon's office for a follow-up appointment. Took them forever to get to us but O well. Dr. G. (the surgeon who helped save my daughter's life), said Whitney looks good and to still be on the watch for signs of reherniation. Which include throwing up. Because her 'guts' could easily float back up threw the stiches or the patch because they Are just floating around, not attached to the intestine wall. I really hope that doesn't happen at all! I would be so so sad. She said the last right sided CDH repair she did was 5 years ago! But that that little girl is doing really good so that is hopeful! SHe wants WHitney to get an Xray soon, just to see how things are, and follow up every three months then once a year! Crazy but of course!

THIS is THE DAY that Whitney has been home for 8 Weeks! SHE was in the Hospital for 8 Weeks!!! Tuesday is the day she came home, So Wednesday was the day that we had our little baby home longer that she was in the hospital for!!! Her shirt says I got my first HUG at St. Joesph's Hospital, Phoenix, AZ. Ha, she looks like she is floating! So my mom & I went on a little shopping spree for Whitney, buying some new outfits to celebrate! I was really looking forward to this day, it was a good day, and now it's past. But it gets better each day because she is home with us, safe and loved.

THese next 3 pictures are in sequence of my baby girl rolling over! First she cries. Ha, poor thing. THen she finally flips over. Then she gets her Ducky Pacifier to calm down. She is actually getting much better at rolling over now she doesn't cry as much! She's in her new dress Grandma P. bought.

Another first! We took WHitney for a walk around the neighborhood! Great weather Great company! Boo smokers, haha, sorry! WHitney had a good time just looking around at everything (she's still healthy so I think the fresh air was good for her). But it is (finally) getting chillier so we might take her out again. Her last little walk outside was 8 weeks ago when she came home!

Just a super cute pic on the day she was with us longer than away. Love the PJ's and sleepy look! My aunt mentioned some stuff about energy healing, so I googled it. I think it's worth a shot. I believe WHitney is emotionally detached from us and food. (How would you feel if you mommy & daddy had to leave you every night for the first 2 months of life?) I'm trying to hold as much as I can, because she really seems to like that a lot! Any ways, just some kind of emotional healing help after all she's been though, so we'll see if we comfortable with that. We're helping her in every other way possible but maybe this is what's missing.

Oh yeah! I finally found a little tutu! it's attached to the onesie which says Mommy's Princess!

Yes, her daddy is really asleep! This was taken at about 2 this morning! THis is how THomas feeds her. She's comfy but not cuddled. Classic!

IN these next pics, obviously, Whitney does not have her nasal cannula in! ANd oh she looks so adorable! It's like she's missing some though, like when some one doesn't have their glasses on! I gave her a nice bath and changed out all of her oxygen tubing and the cannula. Cleaned up her face good, because it gets all red and sticky! SHe likes it off but hates it being put back on. But it does help her and hopefully she get weened off it early next year! I mean really, how is she suppose to crawl being hooked up?
SHe is a super fun baby girl and I'm so grateful I get to stay home with her. THank you all for reading my blog and loving our little family. I hear some primary children still pray for her, that is so sweet. I know that my heart has been softened by this miracle. ANd testimony strengthened. It has been and definitely will still be a rough road. But worth every minute. I know there's lots of you out there who can relate, having a baby/child with medical needs, so I hope my blog also helps you. Phew, long blog! Much more to come of course as my baby grows! I keep telling her that I want heathly and stong and happy!