Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Monday, November 26, 2012

NEW BLOG

  I had to make a whole new blog!   So this will be the last post on Whitney's blog!  I hope it will still help future CDH parents on thier journey.  I'm sure I'll always refer back to it because I love looking at all of her pictures and reading how amazing she is.  I hope one day I can make this blog into a book.  So, this blog has used up all it's picture space which is why I'm just doing a whole new one.  Luckily it came at perfect timing with the birth of our son Cameron!  So here is the address, I hope you all still continue to follow our family's story! 
 
It's called The Montgomery Montage
 
 
 
 
 
 

Sunday, November 11, 2012

Cameron Alaka‘iponopau‘ole Montgomery


Alicia is very occupied with nourishing our brand new baby boy so today I’ll be in charge of handling the blog.  So with great pride and joy we welcome to the world Cameron Alakaiponopauole Montgomery.  Cameron was born early in the morning at 2:07am, weighing 8 pounds 5 ounces, and measuring at 19 and ¾ inches.  No noticeable complications with the baby and mommy is doing just fine in recovery.
 
 

We arrived at the hospital around 7:30pm Saturday night for a planned induction.  We were assigned our delivery room at about 8:30pm.  They had to ask a million little questions and get an intravenous started.  Alicia needed some blood drawn, and this experience only seemed to validate her fear of needles, unfortunately.  Alicia started induction around 10:30pm.  At that time the doctor said that Alicia was 3 centimeters dilated.  The plan was to play it out for a while and then when contractions started getting uncomfortable, she’d get an epidural.  Between 10:30pm and 12:30am it was pretty uneventful, we watched Netflix.   At 12:30am, the contractions started getting stronger, and Alicia asked me to give her massages until she felt better.  For about an hour, Alicia continued to have some contractions, but she said that they just felt like menstrual cramps and weren’t that bad.  During this time I was exhausted and I fell asleep.  Then at 1:30am, Alicia said they started feeling like stronger cramps and so she asked the nurse to order an epidural and Alicia woke me up shortly after that.  So when I woke up, Alicia was visibly getting more and more uncomfortable.  It took about 20-30 minutes for the anesthesiologist to arrive and at 2am, it was too late, Alicia was in full blown labor and was ready to deliver!  Yep, Alicia delivered Cameron with no pain meds and she did it as gracefully as you see it in the movies.  J  The rest happened very fast and Cameron was born at 2:07am.  Alicia tore only a little bit and didn’t need stitches.  I got to cut the cord, and Cameron was immediately put on mommy’s chest for skin-to-skin time.  Cameron made his first little cries and opened his eyes and for the next hour we just adored our new little guy.

So that’s his birth story all summed up.
 

 

Alakaiponopauole is the Hawaiian name that we’ve bestowed to our new son.  It means “forever a righteous leader” and expresses our hopes and desires for the future of our son. 
 


 
 
We’re so excited to have him as part of our family and feel privileged to be able to raise him in our growing family. 
 


 
 
I’m a little nervous as to how Whitney will react to having a new baby brother in the home, but I know things will turn out just fine.

 

 

 

Thursday, November 8, 2012

Eating (video)

This is the second time Whitney has eaten since April! It was cheese again and it was amazing again! And I got it on video this time! Proof! 













Tuesday, November 6, 2012

New medicine

It's called Periactin.  Generic name is Cyproheptadine. Technically it's an antihistamine used for allergies and sometimes is prescribed for migraines.  But in the tube feeding world, it's widely used and it works really well as an appetite stimulant and decreases vomiting.  Our new GI doctor, here in CA, prescribed it and we just started using it last Saturday.  I'm not sure why our previous GI dr. never prescribed it or even mentioned it.  Whitney obviously has slow motility because even feeding her the slowest rate, she vomits about 2 to 4 times a day.  So this med increases the kids appetite which means they are digesting their food better/faster to make them hungry.  Lots of kids who are trying to be tube weaned take this to increase their oral intake of food.  For us, it's actually helping Whitney to not throw up.  She still doesn't eat by mouth but she is finally digesting all the calories and nutrients her body needs to grow. It's only been a week but it's been wonderful.  I pray this medicine will work for a long time and that she won't get immune to it.  Every time we try something new, it only works for a little while before she's back to vomiting several times a day.  Like, every formula change (similac, alimentum, neocate, goats milk, compleat), or new medicine (prevacid, erythromicin) or different way of feeding her (slow or fast, bolus or slow drip, pump or syringe), or surgery (g tube, botox injections in her pylorus, removal of adhesions from her intestines), works at first, she'll stop vomiting, but a week or more later, her body still vomits.  In a previous post I asked which would be better; a fundo or a GJ tube.  I couldn't stop thinking about how much I wanted to avoid both of those options.  Like I couldn't even think of them being options because I really wanted something else to work, something like a medication.  I don't think the fundo or the GJ tube would really solve anything, she'd still vomit and retch with them.  But the thing is, I just can't stand to take my baby to the hospital.  I know she's been through all these surgeries and stuff before and I've tried to be super brave for her, but I just can't anymore.  It doesn't get easier every time, it gets harder.  Anyways, so since she has been on this med, she only throw's up once a day or less!  And it's usually caused by her getting hurt and crying too much.  "Normally" she'd vomit every single morning, and then a few times through out the day just randomly.  This past week she'll only vomit if, say, she falls of the couch or piano bench or accidentally pull her hair or stub her toes or fingers (you know toddlers).  She's also getting a little more adventurous at licking new foods.  So far the only side effect is that her nap time is different, like one day she'll sleep for 4 hours, then the next she won't even take a nap.  Which really stinks for me because I really depended on those naps at this stage in my pregnancy because I don't get much good sleep at night.  But luckily, Whitney will hang out in her crib happily for a couple of hours awake.  So we just try to make up for it by putting her to bed earlier, while still giving her a chance for a nap or even just quiet time.  I'm not exactly sure if this medicine working means that she has a specific diagnosis or not, but I'm just glad it's helping her (for now).  She definitely seems happier, because she doesn't vomit as much and because she is getting much needed calories and nutrients.  She is still being feed on a continuous slow drip all day and night.  I don't think she is ready to handle large amounts of food at one time yet.  But if this med continues to work, that schedule may be possible.  I just wish there was a better way to help her GI system to function better, but it all goes back to her CDH.  Every CDH baby is different which is way it's so hard to figure her out! Having your insides develop abnormally and then having them surgically "messed with" a few times really throws your body off balance.  I am so grateful this medication is working and that Whitney is feeling better.  Also thank you all for your support and prayers for her and us on this crazy journey. 





Friday, November 2, 2012

Cardiology Appt.



 Whitney did amazing at her cardio appointment today.  I mean like, she didn't hardly even whine let alone cry and vomit.  I am still in shock at how well she behaved.  There have been maybe a couple other dr. appts (recently) that she did well with emotionally.  But you know, her entire life, she hates going to the dr.! I'm not sure why she did so well, but I'm so proud of her.  I really wish there was some way I could reward her.  But I guess that is also the beauty of it, she's not bribed or reward for her behavior.  No candy, no new toy, no forbidden toy, no french fries, she's just herself.  

Whitney stood on the scale perfectly, weighing in about 27 lbs.  She stood against the wall wonderfully for her height and is about 35 inches tall.  It's so awesome that she's not failure to thrive anymore, she's just perfect.  Whitney held out her arm so nicely for the blood pressure cuff. Held out her cute little finger the the pulse oximeter.  Super surprisingly she did so well during the EKG.  She was a tad nervous but still let the nurse put the stickers on her chest and hook up the machine.  

The rest of the time she climbed on chairs and walked up and down the step stool.  It took forever for the Dr. to come in and talk to us.  I gave him Whitney's recent Cardiac Cath results and he said it was very helpful.  He just wants to get an ultrasound of her heart so make sure the pressures still look okay. He was a little worried about her being off the Sildenafil because according to the notes, the pressure in her lung/LPA are still on the high side.  It's a little scary knowing her heart and lungs don't function perfectly.  But I know they work great for her and will keep working her whole long life with very little intervention.  This new cardiologist is really nice, so I'm really glad for that.  He examined Whitney too and she didn't even get scared! 

BTW the appointment was on Halloween so we wore our cool skeleton shirts.  I got so many compliments!  It was fun having every one enjoy my baby skeleton shirt!

 "I'm so cute"


 "I'm so brave"



 "Cheese"


 "This is fun!"







 "I don't need this barf cup!"




 "There, I licked it, now throw it away please."



Thursday, November 1, 2012

Trunk or Treat

 Trunk or Treat is a tradition our church does every Halloween. I believe that almost every ward every where puts on a little Halloween party like this! They also all serve chilli, I highly dislike chilli.  So the idea is to decorate your car and pass out candy in the parking lot.  We didn't really decorate our car this year, our black car is kinda broken but if it weren't, I would have dressed it up like a skeleton too! Orange car was just a good car to sit in.  They also have some games planned for the kids to play but we just let Whitney run around inside. 

This year it was on my birthday!  I don't mind, it's not like I have much else to do, but my friends did make me a cake and came over after the trunk or treating to celebrate with me and we played catch phrase.  We love cake and catch phrase!  Keawe let me sleep in and he mostly took care of Whitney, which was totally nice! He also took me out on a date the night before my birthday.  We shared a plate at Cafe Rio, shared a caramel apple from Rocky Mountain Chocolate Factory, went to Micheal's for some yarn, and then he bought me a balloon at Party City.  It was so nice being able to go out with just him!  Just focusing on each other and not worrying about Whitney.  Thanks so much to my friend who volunteered to watch her for us!  I can see now why it's important still 'date' your spouse and keep the romance!  It's hard to do that with kids!

Anyways, once we got Whitney to carry her skeleton bucket, she really loved trick or treating!  She was so cute saying trick or treat and grabbing a piece of candy and putting it in her bucket and saying thank you.  Keawe took her around, then I took her around.  I got some good candy!  Everyone loved my shirt and thought we were all so cute as skeletons.  Whitney thinks it's so funny how the baby on my shirt has his hand positioned, and she always said "high five baby" and gave the baby a high five! I think she's so funny!  There is no way Whitney would have put up with a big fancy costume...she freaks out if I put a long sleeved shirt on her and won't stop crying till I take it off!  Maybe next year?  Also, on Halloween, we did not go out trick or treating, for one, nobody in our little town does. I think it's a religious thing.  Also, Whitney really doesn't need the germs, I don't need the candy, and Keawe needs to study.  Maybe we'll find a place next year, although I'm sure our needs will be the same!

Enjoy our pictures!  And no, I'm not having twins, I'm just 38 weeks pregnant! AKA I'm huge and due any day now!