Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


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Wednesday, October 26, 2011

Pumpkin

Sorry it's been a while since my last update.  I'm really glad that Thomas wrote our story about Lucy.  I still can't believe she's gone...just like that.  It's going to be really hard with the holidays coming up for her family to be with out her, I'm sure.  But I know that they are coping well because we know Heavenly Father's plan of happiness Learn more here! 

We are doing really well here in the Montgomery family!  I'm loving my Food and Nutrition 241 Lecture & Lab!  It's very informative and fun.  I've been wanting to take this class for a while now to go towards my associates degree,  but it ended up being really good timing.  I love learning about nutrition, especially for Whitney and my family.  Thomas is always working very hard and overtime at his job!  He is a wonderful Father and & Husband!  I hope I can raise my children to be responsible, self-disciplined, and loving like their daddy!

Whitney had a cardiology appointment earlier this week and got an echo done.  She did really good with that because her Grandma brought her small play piano. We held it above her head and she just played with it the whole 20-30 minutes!  Everything is still looking pretty good, at least nothing is getting worse!  Pulmonary hypertension is hanging out there still and he increased her dose of the Sildenafil because she's gaining weight.  The PDA is doing fine, still very small.  The ASD is okay but that will need to be closed in a few years (maybe when/if Whitney re herniates).  Dr. Puntel just wants Whitney to grow and be healthy and strong.  They might need to do a procedure called cardiac-perfusion-scan  to see if Whitney will need another cardiac cath done with in the next year.  Also I asked how many more echocardiograms does she need and he said that he still wants one every other month.  Eventually, it will go down to twice a year, then once a year up until Whitney's a teenager!  Crazy! 

I love taking pictures of Whitney in her favorite chair! So here are some recent ones!  Whitney is 15 months old, about 18 lbs and 30 inches.  She is so much fun and so adorable! She is getting smarter everyday!


















For Halloween this year Whitney is a Pumpkin!  In fact, we are all pumpkins! I think it turned out pretty darn cute!







I can't believe how lucky I am to have such a cute lil' pumpkin!  






This is Whitney last year for her 1st Halloween!  It's incredible how quickly babies grow!










By the way,  tomorrow is my birthday :)

Sunday, October 16, 2011

The passing of little Lucy

This is Thomas writing.  I know, its been like forever.

I woke up Friday morning, I had already slept through my morning alarm clock a little bit and I was in a rush to get out the front door to head to work.  I got my work clothes on, put on my shoes, combed my hair and was about to head out of the bedroom door when I saw something unusual.  There was a huge pile of used facial tissues piled up a foot away from the computer sceen.  Three feet further away was the trash can, so it was clear to me that whatever Alicia was reading the night before caused her to be super glued to the monitor to the point where she didn't want to get up to throw away the snotty tissues.  And then of course there were those tissues.  She had clearly been sobbing and I knew she was not sick.  And of course the thought passed through my mind that maybe it was something I did that I was oblivious to (that's happened a couple times), or maybe something else.  Once a few years ago Alicia ran over a stray cat who darted out in front of her and Alicia was completely distraught about it for days and during which she didn't want to tell me what happened and the whole time I was thinking she was upset with me.   I didn't want this to be one of those situations again. 

So although I was already running late for work, I snuck back into the bedroom, Alicia was still sleeping, I softly woke her up being careful not to make much noise as Whitney's crib is in our room, and told her I saw all the tissues and asked if anything was wrong.  Alicia asked if I really wanted to know, and I replied with a soft "Mm-hmm".  Then in a helpless tone Alicia said, "Lucy died."  I knew who Lucy was because Alicia always talks about her and her family and their struggles.  Lucy was a baby that was born right around the time Whitney was born, and althrough Lucy had different medical complications than Whitney, they both had feeding tubes which is how Alicia and Lucy's mom hooked up.  Alicia was an avid follower of their blog (http://elizaandchuck.blogspot.com).  Even if I were doing something important on the computer, Alicia would kick me off if she knew there was a new post to be read on their blog.  Alicia was very emotionally invested in Lucy's well being.

So when the news hit me that Lucy had passed away, I knew this was a very sad time.  I laid there in bed with Alicia and held her, forgetting about how late I was going to be for work.  Our hearts, thoughts, and prayers are with Lucy's family.  This especially hits home for us as Lucy is the same age as Whitney and we are forced to image what their family must be going through.  Yet we celebrate Lucy's short life and the impact she's had on so many, including us.  And we rejoice in our common faith and understanding of Heavenly Father's plan of happiness and our true purpose for coming here on earth.  How we wish Lucy could have stayed longer to enrich our lives even more.  But we are humbled knowing that Lucy was needed more so in the celestial courts on high.  We love you and will miss you, Lucy.

Thursday, October 13, 2011

Love Livin' Life!


So it has been a little longer that usual getting my blog updated, like 2 weeks, haha.  Life is busy with a toddler!  And one who doesn't eat is even more time consuming! 

Took Whitney on her first bike ride.  A friend let us borrow her bike trailor and and another friend has a new one that I can buy for cheap.   It was fun riding with her and my whole family!  I got tired fast though so I need to do it more often!!

I love seeing all of Whitney's books open and her reading them!  So adorable how much this girl loves her books.  She always wants to sit on my lap while I read her a book.









We also got Whitney her flu shot.  She needs a "booster" shot in a few weeks.  Chances are still slim that she will get the synagis shot to prevent RSV.  I've talked to a lot of other "special needs" mamma',s they didn't get the shot the second time and their kid got RSV and were hospitalized! So I'm super nervous about this season,  and it's going to be really difficult keeping her at home. 


Whitney loves to play and run around outside.  She loves to feed all the turtles with her Gramma. 





Last week we saw the pediatric surgeon to do a check up on Whitney's Mic-key button (g-tube). She's happy with it and says everything is going good! We are going to see her again next week to change Whitney's button and learn how to do it my self.


When we get a new couch, it is not going to be dark brown!  It always hides Whitney's pretty hair!










 Thomas had a Dental School Interview with Denver last weekend.  He said it went really well and he had fun.  He has another one here in Az in Dec. and one more lined up in Jan. in CA.  I really hope we get excepted some where, mostly here though.  

We are still doing speech/feeding therapy, which is going pretty well.  Whitney is doing much better with her meals and seems to be eating a little more by mouth.  She is finally gaining weight and not vomitting on the Goat Milk Formula.  Whitney now weighs  17 lbs. 7 oz.  And is almost 15 months old!!


Whitney loves climbing up this chair and standing on it.  She loves to sit and rock in it for a few seconds too.  Yes she has pectus excavatum that can be clearly seen in these photos.  Enjoy the may adorable faces of Whitney.