Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, November 30, 2010

Praying

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!