Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Wednesday, March 14, 2012

AZ Aloha Festival

Thomas and I went on a double date with our best friends the Starchmans.  They got a babysitter for their three boys. My mom watched Whitney for us.   Then we picked them up to carpool.  And we went to the Arizona Aloha Festival! 

This was our first time going.  There were a ton of people there!  It also had tons of vendors!  Looked at every little shop full of Hawaiian decor and clothes and jewelery. Oh if we had a spot in our home we'd have gotten some cool hand made plaque!  But we did of course buy a little Hawaiian dress for Whitney.  Rachel bought her matching hair clips with a plumeria on them!  I haven't tried it on her yet (mostly because I'm afraid she'll throw up on it) but I'm sure there will be an occasion soon! 

The Hawaiian Fest. also had a lot of yummy food options!  The lines were so dang long though.  We did not want to wait that long in the sun for food, so we just picked the shortest line that had good looking food pictures.  Surprisingly,  that food tasted really good!  We just got rice and teriyaki chicken but it was perfect!  We also got a Spam Musubi.  I like the spam and rice but not seaweed!  Matthew got the same chicken rice thing but didn't feel brave enough to try the spam musubi!  We also got some yummy strawberry lemonade. 

Then we sat down and watched the dancers!  They are amazing and make it look so fun!  I would probably look ridiculous even trying but Rach and I joked that we should do when we are old ladies!  But I can totally imagine Whitney doing the hulu!  Since she is Hawaiian, she'd be perfect!    I told Thomas we should totally put her in a class when she is older.  He is skeptical but I reminded him that he does want her to keep in touch with her Hawaiian side!  It was pretty warm but we watched the talented dancers for a while. 

Then we shopped around a bit more and admired all the cool stuff, dreaming we could afford it all.  It was getting hotter and more crowded so we decided we had to take off and relieve our baby sitters.  It was so much fun hanging out with our friends!  Although me and Rach got sunburned and mine still hurts!










Our little Hawaiian girl...

Friday, March 9, 2012

Upper GI Endoscopy/ EDG



FYI this story is full of tears and vomit so if you don’t want to read it, I’ll summarize first.  We got to Phoenix Children’s Hospital in the morning for Whitney’s upper GI Endoscopy/ EDG (esophagogastroduodenoscopy).  Whitney recovered like a champ.  They took blood work, biopsies, and did Botox injections around her pylorus (is the region of the stomach that connects to the duodenum, the beginning of the small intestines).   Whitney’s stomach is in a very odd “J” shape which could be why she cannot digest all of her food causing chronic vomiting.  If the Botox and meds don’t help then we need to consider other options.  If you want more details then please read on!



This morning we were going to feed Whitney a couple ounces of food around 3am because that was the last time she would be able to have food in her stomach.  I didn’t sleep to well at all because I was so anxious so when my alarm went off, I got right out of bed to go feed Whitney.  But she was already awake, coughing.  She looked like she was going to puke so I got her out of her crib and got a towel ready.   She did of course, which I thought was odd because she usually does great at night.  Eventually Thomas woke up and got us cleaned up and new clothes.  Whitney threw up again, poor thing.  So Thomas gave her a blessing of healing and comfort.   Then we let her sleep in our bed without feeding her. 



In the morning, Thomas gave Whitney her water and meds while she was still sleeping.  Then he went off to work.  Whitney and I got up around 8am, at which time I gave her her last two ounces of water that she could have before the procedure.  I got already to go and finished packing.  I didn’t bring anything much different than I usually do for appointments besides more extra clothes and more food (which I didn’t end up needing much of either).  Plus I brought a blanket and pacifier for her and a book for me.  After I was mostly ready, I held Whitney on my lap while we watched Elmo World on Sesame Street.  I love snuggling her!  


didn't want to play in the play room with the other kids

They say for us to check in at 9am, which is two hours before the scheduled appointment.  So after much experience, we (my mom and I) left the house just after 9am and we got to admitting at 9:40am.  I signed in and they put the ID band on Whitney’s leg and she started crying.  Then we walked all the way across the new main hospital to the older part of the building for the procedure.  She got weighed and measured.  Then we waited in a small room with a hospital crib and TV.  We changed Whitney in to her hospital gown and pants; this was the first time the pants didn’t fall down!   We turned on Tangled while were waiting but didn’t watch much of it because we had several nurses and doctors come talk to us about the procedure.  After a long while, Whitney stopped crying and I put her down to walk around.  She didn’t even cry when some of the Doctor’s came in to talk as long as they didn’t come near her.  They all said that they would take good care of her. 



Eventually, they walked us back to the procedure room.  My mom was holding Whitney.  The nurse took her back and Whitney started screaming.  It was so sad.  I didn’t want to go back with her till she fell asleep because that makes it even worse for me.  Whitney would be scared no matter what.  Then we went out the waiting room.  There was quite a few other out there waiting.  I started praying for a while then got out my Sudoku book.  They took her back around 10:50am.  Around 11:45am the Pediatric Surgeon Dr. G. came out and talked to us.    She said everything went really well.  She changed out the Mic-key button to a Mini button.  Those ones are harder to put in.  It looks great but I’m still not use to it!  Dr. G. said that Whitney’s stomach is definitely a big “J” shape vs. a lima bean shape.  It just grew that way.  It could definitely be contributing to Whitney chronic vomiting because the food just cannot exit as it should.  She has seen this before but didn’t think it caused many problems for other kids.  She doesn’t think it’s caused by Whitney’s CDH issues.  But will ask around about it.   There is not a surgery to fix the shape of the stomach.  She doesn’t know it the Botox injection will work or not because of the shape of Whitney’s stomach.  Talked about a lot of different options to help Whitney stop vomiting and gain better weight.  Nutrition is very important and this young age for brain development.  Dr. G. doesn’t really like any of the options but they are a Nissen fundoplication, GJ tube, or a J tube.  The Fundo (where they wrap part of the stomach around the top of it to prevent reflux/vomit) messes with all of Whitney’s scar tissue and CDH repair surgery.  The GJ tube (it’s still one tube but as an extra port with a long tube going into the duodenum and small intestines) will have to be placed surgically for her because of her odd stomach shape, vs. just doing it in radiology.  And there are many different complications to that.  And the J tube (a separate tube attached to the small intestines) is also a surgery just like the G-tube but parts of the intestines could get wrapped around it.  It’s not natural to feed the small intestines so it has to be a very special formula and goes in a very slow continuous rate.  These are options to be discussed later; we’re not in any hurry to jump right in to these surgeries.   Dr. G. told that Whitney is not any more at risk for these complications that any other child because she is survivor and a miracle.  I am really scared to do any of the other options but I am willing to do what it takes to help Whitney thrive. 



Then the GI Dr. U. comes out to talk to us.  She said that she took a few biopsies to test for a few basic things.  She also took some blood samples to test for other things.  Whitney’s esophagus looks normal and so does her stomach.  She couldn’t even get to scope into see her small intestines because of the shape of her stomach and pylorus and duodenum.  She did the Botox injections even though she’s not sure it will work but it’s worth a shot. She said to stick with the Erythromycin to add in digestion.  I told her earlier that it had made her vomiting worse which is why she thinks that Whitney’s odd stomach shape is a big contributor to vomiting.  So hopefully with a paralyzed pylorus and the stomach being contracted more (Erythro) and it being tighten at the top sphincter from the Bethanechol medicine that soon Whitney will stop throwing up and gain weight.   If it does help then we are looking at doing this procedure every two to four months.  If it doesn’t work then we need to consider our other options.   Dr. U thinks that Whitney’s stomach is like this because of her CDH issues and abnormalities and scar tissues. 



Ready to go home!



So, so far our understanding is that it’s an anatomical issue.  Even though Whitney has vomited her entire life thus far, her stomach has grown to be a big “J” shape making the food settle at the bottom and it can’t exit.  So when it’s time to feed her again she still has a lot of food in her stomach and will just vomit.  She doesn’t even seem to be in much pain before she throws up.  It’s just weird and I hope we can find a better solution to help Whitney.  This also further confirms to me to she is not able to be tube weaned any time soon.   

Insomnia



So after we talked to the Doctors we were finally able to go back to Whitney.  She had already woken up and was hugging a nurse.  I then held her and she was crying a lot but I rocked her sleep again while the nurse was telling us discharge info.  They said it is hard to wake up from anesthesia and disorientating.  After about 15mins in my arms, my left are went numb, so we feed her a small amount of food.  Then I gave her to mom to hold.  Whitney was still in her hospital clothes and we did not want to wake her up to change her!  So after about 30mins or so we decided to leave.  We wrapped her up in her blanket and told the nurse we were going to leave now.  The escorted us part of the way out.  Whitney woke up but didn’t move at all.    So yes, we did leave with their hospital clothes! Ha-ha! Sneaky!  Don’t tell! JK!  We are planning on bringing them back for Whitney’s next procedure! 

My Beauty trying to smile


On the way home my mom feed Whitney two more ounces of food and one ounce of water.  Whitney was pretty whiney the whole way home and couldn’t fall asleep.  Right when we get home...vomit, everywhere, on everything.  Nasty green vomit.  Ha-ha!  We spent the rest of the day trying to relax.  Whitney threw up a couple more times.  Tried to take a late nap.  Then she stayed up till about 11:45pm!  Crazy!  She got about 16oz of food today and threw up at least half of it.  She kept down her 12am feed but woke up around 4:30am and slept with me till 830am!  Very strange sleeping schedule for her so hopefully tonight will be much better. 

threw up on our bed so we set up blankets and pillows in the living room


All in all, even though it was scary and traumatizing for Whitney, she did well and came through just fine!  We are very grateful for amazing doctors and specialist and nurses and for the technology to help our precious daughter. 

Whitney roamed around all night till she finally settled down right by her daddy! so sweet!

Wednesday, March 7, 2012

Stressed





If you didn't catch my blog post the other day, I was kinda feeling stressed.  Sorry if I offended anyone.  From now on I should just bike it off or even better, sleep it off!  haha. 

I didn't mention that, to add to the stress I was feeling yesterday, we got Whitney weighed in the morning before her feeding therapy.  She always cries when she gets weighed so it takes a while for her to hold still long enough to get the numbers right.

She weighed 19 lbs 7oz on March 6th

Six weeks earlier on Jan. 17th, she weighed 19 lbs 5oz

I don't think a two ounce weight gain is very sufficient.  The dietician says she has a really good homemade blended food formula with enough calories in it.  Whitney is just unable to handle the amount that she needs to gain weight faster.  She vomits if she gets more than four or five ounces at a time.  She also vomits if she moves around a lot like jumping, running, sliding and swining, and car rides.  Ooo I think I'll ask this new GI doc about "neurotin" since the other didn't think it would help!  :)

So after going to Whitney's feeding therapy, it makes me feel one of two things: Like I'm doing a good job at doing home feeding therapy or that I'm slacking and need to do more stuff "feeding" wise with her.  Ok usually it's the latter of the two.  I need to brush her teeth more, I need to feed her water from a spoon more, I need to measure how much water she eats or drinks,  I need to do more "play" in the food, I need to have her watch me make more food, I need to have her clean up her own food mess, I need to time how long she sits in the high chair for, and so on!  And that's when I hit my phases again of anxiety, fear, depression, then hope and all over again.  Every week. 


In the afternoon it was time to cut Whitney's bangs!  I take her to the lady who does my hair.  Whitney usually cries a little.  One time she was asleep and that was awesome.  But this time she freaked out.  She started getting really scared being in the salon, and started whimpering and held me close when we went to the hair dresser, Anika. Makes her sad scared face and when I put her in the chair, Whitney starts screaming and crying.  My poor girl always gets so anxious and fearful in new situations.  I grab the trash can in anticpation of her third throw up of the day.  She did of course, then Anika proceded to cut her bangs.  One lady said, put her in your lap.  Well I knew that wouldn't help at all and I'd prefer not to get barfed on!  I reassured them that it was sad, but perfectly normal for Whitney to act like this and that she'll be okay.  I'm thinking though, next time I might try to do it myself or have someone else who can come to the house. 

I changed her wet clothes and on the way home I decided to go to the park.  It was so nice and windy outside! Luckily we don't get allergies and sick like my husband does.  I tried to relieve my stress by enjoying the weather and watching my beautiful daughter play.  She likes the swing, slide and sand.  She loves to pretend to drive a car with the steering wheel there and she also said HI to a little friend. 

I'm also really stressed out in anticipation of Whitney's endoscopy tomorrow.  Wikipedia defines endoscopy as Endoscopy means looking inside and typically refers to looking inside the body for medical reasons using an endoscope, an instrument used to examine the interior of a hollow organ or cavity of the body. Unlike most other medical imaging devices, endoscopes are inserted directly into the organ. Endoscopy can also refer to using a borescope in technical situations where direct line of-sight observation is not feasible.

Another definition by WebMD is:
An upper gastrointestinal (UGI) endoscopy is a procedure that allows your doctor to look at the interior lining of your esophagus, your stomach, and the first part of your small intestine (duodenum) through a thin, flexible viewing instrument called an endoscope. The tip of the endoscope is inserted through your mouth and then gently moved down your throat into the esophagus, stomach, and duodenum (upper gastrointestinal tract).
Since the entire upper gastrointestinal (GI) tract can be examined during this test, the procedure is sometimes called esophagogastroduodenoscopy (EGD).
Using the endoscope, your doctor can look for ulcers, inflammation, tumors, infection, or bleeding. Tissue samples can be collected (biopsy), polyps can be removed, and bleeding can be treated through the endoscope. Endoscopy can reveal problems that do not show up on X-ray tests, and it can sometimes eliminate the need for exploratory surgery.

Whitney's GI Dr. and the Pediatric Surgeon will be there.  They are going to take biopsies and blood samples.  The dr. also wants to try botox around Whitneys Pylorus sphincter or just strech it.  They will look at her long stomach and see if it's causing problems.  They will also put in a Mini button to replace the Mic-key button.  It's just a smaller G-tube. 

I just keep thinking and imagining and pretending that if Whitney and I just say a prayer together before hand then she won't cry.  It's a nice picture but, reality check, that's extremely unrealistic.  Whitney will scream and cry no matter what!  All the praying and blessings and positive thoughts in the whole world won't help my little princess to not be scared to death.  I really don't blame her though.  I just hope she knows that I still love her and that I'm there for her.  I'm still debating if I want to go back there with her till she's asleep or not. 





Sunday, March 4, 2012

Power of the Priesthood

Power of the Priesthood

In Relief Society today, our lesson was about the Priesthood.  At first they were just talking about the 12 year old boys who are first able to receive the Priesthood and I couldn’t really relate but it was interesting.  Talking also about how men can prepare to receive the Priesthood and how to honor it.  We also talked a bit about the history of the Priesthood.  I love my church and realize that I post a lot concerning it and the teachings but it’s just such a huge part of my life.  I want my children to read my journal/blog and know that I have a testimony of this church, and that I know it is true. I mostly feel compelled to write about it on Sundays but I do feel the spirit and good works throughout the week. Do you have a testimony that your church is true or have you felt the spirit tell you that your church is true?

On the website mormon.org it gives a lot of great answers to questions. For example what is the Priesthood?

The priesthood is the authority to act in God’s name. The same priesthood authority that existed in the original Church established by Jesus Christ exists in The Church of Jesus Christ of Latter-day Saints today. The Church is directed and led through this authority.

All male members of the Church who are prepared receive the priesthood in order to help lead the Church and serve Heavenly Father’s children. A man with the priesthood might serve in some of the following ways:

•Leading congregations of the Church

•Performing the ordinances of the Church, such as baptism

•Blessing those who are sick

God expects those who hold this sacred priesthood authority to follow the example of Jesus Christ and serve with love, gentleness, and kindness.

The Priesthood has blessed my life in numerous ways.  I know that we have a true and living Prophet on the earth today.  I am grateful for our Bishop and Stake President and all their counselors who hold the Priesthood and honor it faithfully.   I am extremely grateful for my Father and my husband for their faithfulness to honor their Priesthood.  

 A quote from a member reads: 

“The priesthood of God has been a blessing to me in my life.

I have personally witnessed miracles that can only be explained by the power of the priesthood of God exercised upon individuals who were ill or otherwise afflicted. As a physician I am unable to explain the way that this works; however my knowledge of the priesthood allows me to understand more fully the witnessed healings.

God continues to bless his children through the priesthood. He has not abandoned us here on earth to walk in darkness without the ability to assist one another. Jesus Christ is the greatest physician. He healed the sick, brought sight to the blind, restored many to the previous normal state and raised the dead. All of this was performed by the priesthood power of God.

I know without a doubt that the authority or the priesthood is on the earth today as I am an eyewitness to its' restorative power.”

I really feel the same way as that above quoted man.  The most recent miracle I’ve witnessed is Whitney, my daughter.  In church today I wanted to share stories about her and the healing power of the Priesthood but I was shaking just thinking about it.  I knew that if I started I would just cry and cry and not even be able to talk (he he).  Maybe one day I will feel more comfortable talking about Whitney, but for now, I’ll just write it down. 

When I was pregnant with her, and after we received her diagnosis, I needed many priesthood blessings.  There are even special blessing of healing used with consecrated oil.  I remember praying for Heavenly Father to perform a huge miracle by healing Whitney while she was even inside of me.  I always imagined that she was growing healthy, but the next Dr. appointment would always re-confirm her life-threatening situation.  So I decided to just pray for comfort and understanding.  My husband, his step father, and my dad gave me and Whitney several Priesthood blessings.  Mostly on special occasions like getting shots, the amnio, and getting the MRI.  I always felt the spirit so strongly and knew that it helped me and my daughter.

When she was born, my dad and my husband were able to give her a blessing using the special oil.  Normally the NICU only lets two people at the babies bedside at a time but when we asked to have three because we wanted to give her a blessing and I wanted to be there too, they would always let us.  We gave Whitney a blessing just before she was put on the ECMO machine.  We gave her one when she was going to be taken off ECMO.  We also gave Whitney a blessing before she had her CDH repair surgery.  I remember being with her right before hand very clearly.  The surgeons were already dressed and ready and Whitney was draped and looked life-less.  I kissed her head and her hair caught me tears.  The surgeons even said a prayer with us.  (I’m crying now just thinking about it).  They had to remove me from her side and I waited with my whole family in a room.  That part I was probably still crying and praying for her.  A while later, the Surgeon came in said everything went well and that they have high hopes for a good recovery. 

Sorry, anyways back to the Priesthood.  There are several other ways that it has blessed my life.  It has helped guide me to know what the best thing to do for my situation would be.  Some of you may wonder why the women of the church don’t hold the priesthood. From mormon.org it says:  Why don’t women hold the priesthood in The Church of Jesus Christ of Latter-day Saints? How do Mormon women lead in the Church?

Gordon B. Hinckley, prior President of The Church of Jesus Christ of Latter-day Saints, said:

“Women do not hold the priesthood because the Lord has put it that way. It is part of His program. Women have a very prominent place in this Church. Men hold the priesthood offices of the Church. But women have a tremendous place in this Church. They have their own organization. It was started in 1842 by the Prophet Joseph Smith, called the Relief Society, because its initial purpose was to administer help to those in need. It has grown to be, I think, the largest women’s organization in the world... They have their own offices, their own presidency, their own board. That reaches down to the smallest unit of the Church everywhere in the world...

“The men hold the priesthood, yes. But my wife is my companion. In this Church the man neither walks ahead of his wife nor behind his wife but at her side. They are co-equals in this life in a great enterprise.”

I have a firm testimony about the men holding the priesthood; they can perform miracles with it. Women can also perform a miracle; it’s called having a baby!  And yes, I’d prefer that!  The priesthood also helps men become more compassionate and kind and helps them remember to always do good.  The husband and the wife equally receive it’s blessings as do all the children and family members.   

Two last quotes from members of the Church of Jesus Christ of Latter-day Saints says:

 “Women don't hold the priesthood because we don't need it. The purpose of the priesthood is to serve others as Christ served us. Women, regardless of marriage or children, already spend much of their life serving and helping others. Most men don't provide the selfless, Christ like service that women naturally perform. The priesthood is a way for men to perform that service and become closer to God through acting in His name through service. Women lead in the church as strong, confident wives, mothers, teachers, and leaders of children, youth, and in leading the Relief Society, the oldest and largest women’s organization in the world.”



“I feel that men and women both have different but equally important roles in getting us back to God. In God's eternal plan we were spirits in His presence before this life. To progress we needed to get bodies on this earth, then perform specific ordinances (eg baptism, marriage) to return to God after this life. Women were given the godly power to bring spirits into this world and give them bodies, then nurture and raise these children with God's inspiration and guidance. The men were assigned the responsibility (through the God's Priesthood power) to serve others and administer the ordinances that will bring God's children back to His presence after this life. Both roles are necessary and equally important to God's plan for us.

I don't think women need the Priesthood to be powerful influences and to do God's work in their homes and in the church. I see men grow spiritually, and their characters become godlier when they act in God's name through using the Priesthood.

I have never felt the need to hold the Priesthood myself. I can still receive all the blessings offered by the Priesthood, my prayers can be just as powerful, and I still have access to the inspiration of God in my life.”

Thank you for reading my story and I hope you have felt the spirit today.