Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, May 31, 2011

Baby's 1st Hike!

Whitney loves dogs!

 Not much new has happened this week! Which is a good thing!  I am still spending all my time with my baby girl and absolutely loving it!  Taking her to Doctor appointments and therapist's.  I love taking her shopping and on walks!  I'm getting organized for a beach vacation in June, a family reunion in June-July, and her big Birthday Luau in July.  For me, looking forward to something gives me purpose and excitement in life...if there's nothing good ahead then what's the point!?  I just always need something to plan for!  And of course there's the eternal perspective of going to heaven, so that also gives my life meaning and a reason.  I'm also interested in interior design and want to take some classes at the community college.  For a year now I have watched the HGTV channel (42) a finally decided it would be beneficial in my life to know something more about interior design, for my future homes and dental office.  I'm also interested in photography but am hesitant about it!  I don't know if it's the money or if I don't think I would have the skills!  But I really want to have great pictures of my family and pay for professionals, I don't want to be a professional though.  I just love professional pictures, and mine, look terrible!

My husband, Thomas, is still pursuing his dream of being a dentist, (I hope he goes into oral surgery!).  He studies almost everyday in preparation to take the DAT (dental admissions test) sometime in June. He's already taken it but wants a better score, to hopefully get in the Air Force (so they pay for school!).  Then all summer he's going to interview at schools all over the country and get excepted for the fall of 2012.  Thomas also works full time to keep up with the bills and keep the insurance!  Thomas spends his free time playing with Whitney!  She loves her da da! 

Is it time to rid the bouncer when she just climbs out!?

Whitney opened up the cabinet for the first time and pulled out a cookie! (Later I bought a lock for it).  The minute I unwrapped the cookie, the dog came running in hoping to get some food!  Whitney says dah or dog and loves playing with her!  The dog only stuck around because she had food in her hand, other wise she would scare away. After only a few bites Whitney let Xanthia have the cookie.

I just can't get enough of her smile! Or take enough pictures!  I let her play with toys in her crib while I do my make up and get ready for the day.

In our "Family Portrait"

Tuesday, May 24, 2011

Reflux med

Quick update here,  went to the cardiologist Dr. P. today and ....  everything is going great!  He is very happy with how the medicine is working and being off oxygen. The great news is that he now only wants to do an echocardiogram every other month!  yahoo!  It's been monthly for the past 8 months. Finally some progess!

 Last Thursday we went to the Pediatrician about a little dark bump on her arm (binine blood vessels that should go away in a couple years).  We told her about Whitney always throwing up and Dr. K. would talk to Dr. P. about it to see if he thinks it's the new medicince or not.  They called me on Friday and said it probably wasn't but more stress reflux.  Decided to start a new med called Zantac.  It's like the Prevacid that Whitney was on before but less powerful. The Prevacid made her vomit so I stopped that a long time ago, which is why I was fine with giving her another type of reflux medicine. I called the GI dr. also to make sure this was okay and his nurse said yes it would be good for her.   Dr. P. wants me to see if there is a pattern to her vomiting now.  So now she is "only" vomiting once a day in stead of 2-4 times a day.

  I think now the reason why she vomits is because she has dry mouth!  No idea why! It's not really a side effect of either medication. And she has never really drooled much any way. She's actually getting in her top front teeth, like really poking through and I had no idea till today when we were playing! I'm so excited though to see her cute little teeth! At 10 months old! So Whitney doesn't have much saliva which is probably why she gags (then throws up) when eating little baby puffs that I break in half.  Luckily she still goes for them herself!  So this issue will be another working progess.

 This is going to be another busy week for the poor little girl!  Appointments everyday really throws off her schedule and it's harder to get her to eat.  All these weight checks and therapies!  Can't wait for a little vacation!

As my mom and I were watching Oprah, Whitney was playing with all her toys.  She went over to the bookshelf and pulled her self up to see the books on the top shelf which is about her eye level.  She would carefully grab a book, sit down to "read" it, flipping through all the pages.  Then toss it aside, stand up and grab another book, sit down to read,  then get another, and she did this for every single book (seriously, like Ten books)! It was so adorable to us!  I need to get her more books haha!

Also today, Whitney really enjoyed playing in her bath.  She didn't try to get out this time and would crawl all around in the tub!  She was splashing and laughing to whole time!  I love her so much!  I hopeing that my whole blog packed full of information and fun will help everyone who reads it!  Especially my family and friends and all mommy's & daddy's with children with medical problems or special needs!  And to Whitney who will one day read it and learn from it.  I know that I am very blessed to have her in my life and pray I will raise her to be the very best she can be.

Thursday, May 19, 2011

Baby's 1st Hair Cut

These are my beautiful Mother's Day roses from my hubby.  He waited till after the day to get my flowers so that they would be cheaper.  Works for me!  I love roses!  After a while, I dry them, then cut off the whole stem and put them back in the vase.

My skinny little girl getting a bath. She can sit in the tub herself but even with a mat on the ground she still slips and will try to get out of the tub!  So this little seat is way easier for both of us.

Whitney 'eating' in her swing 

Whitney's long hair in her eyes all the time.  So  I always have to do a pony tail to keep it out of her eyes.  Thinking about for a while and I finally decided to get her bangs cut.

I went to my hairstylist to get Whitney's bangs cut! She did a really good job!  Whitney was okay at first but after 5 mins she started getting really upset so I had to hold her. This hair cut is so easier to manage.   I love my daughters long hair, but with all the tape we use on her face and behind her neck , it would have been that much easier to do if she were a bald baby.  

My little princess is doing amazing.  Gross motor skill wise she is fantastic!  She'll even stand on her own for like 10 seconds and loves to walk with me holding her hands.  She loves to explore and crawl around the house.  Whitney's not tolerating the new medicine, vomiting 2-4 times a day. We are still working on that though.  She is sat ing in the high 90's which is excellent, but nausea is horrible.  So she gags on some puffs in the high chair and will throw up.  Doesn't seem very interested in spoon feeding but I'm keeping at it, helping her feel comfortable and relaxed and giving her breaks. 

She loves to talk!  Ga Ga, Ba Ba, Ah Da Da, Ma Ma, Broom Broom Broom! Brra Brra, Plus I think her first real intended word is Dog! Every time she see's the little dog or a picture of a dog she will say dog or dag. Whitney is so sweet and precious and growing up so fast! I love being her mommy and staying home with her all day!

Friday, May 13, 2011

Cardiac Catheterization

 Tuesday, May 3rd, 2011, started out the same as every Tuesday does.  We drive to Scottsdale to see the Speech Pathologist who also does Craniosacral therapy for Whitney.  We really like her and think it's beneficial. My mom always comes with us. On the way home, we stopped by the Whole Foods store to pick up some frozen veggies to make baby food with.  Then we went to the GI office, Glendale office, like we do every single Tuesday to get Whitney's weight checked.  She weighted 15 lbs. 7 oz. She's steadily gaining but still below the 5%.  When we get home, she takes a nap and I feed her.  Whitney loves to play the piano so I put her in the bumbo and turn the key board on. My husband plays, wonderfully, I don't play.  The only thing different this day was packing.   I made my list weeks ago of what to pack for her and us during the hospital stay. 

Wednesday, May 4th, we woke up early to get ready to take our baby Whitney to St. Joe's Hospital for her procedure.  We got all her formula prepared, packed the car, ate (Whitney couldn't eat for 6 hours before the procedure), got dressed and out the door.  We had to be there at 8AM which means we had to drive in traffic on the freeway to get there.  There was a big accident in the carpool lane which put us 20 mins behind.  Thomas took work off to be with us and help out.  My mom also came driving a seperate car.  When we got there we got all checked in at the front, then went to the 2nd floor to wait.  We dressed her in some huge hopstial gown and pretty much since then Whitney was not happy.  We watched the Price is Right while they were getting prepared, and Whitney played in the crib with some toys. Our cardiologist, DR. P. came and talked with us and took us upstairs (elevator) to another waiting room.  There the Dr. who was doing to procedure talked with us (for the first time), he was really nice and confident.  The nurses also talked to us and had us sign a bunch of papers.  Then I carried Whitney back to the OR, laid her on the table and kissed her hands till she fell asleep.

The three of us waited anxiously in a large, empty waiting.  Then said they would update us by phone.  We watched Legally Blonde on TV which was a great movie to distract us. After an hour of waiting I was about to call them, but Dr. P. came in the room to update us...everything was going well, basically. Several phone calls of saying everything is going well. Eventually Thomas's mom joined us.  Four hours later at about 2PM they were finally finished.  They explained that they ballooned open the Left pulmonary artery which worked well.  They did not close the PDA or ASD because they were to small.  She could benefit from the medicine and be weened off the oxygen if we stay an extra day in the hospital.  Yes.  They wheeled Whitney off to her room with out us but we followed shortly.

They kept her sedated for 6 more hours to 'keep her still'.  She was not happy when she awoke and it was a long, rough night. Her throat was so sore from being intubated and having a camera thing down her throat. Our mom's stayed with Whitney while Thomas and I went out to eat at Subway.  Then they left for the night and we settled in.  The room was nice and big and private! plus we had our own bathroom!  Way better then staying at PCH.

The next morning Whitney got a fever.  She was so stressed out being at the hospital, poor thing.  When ever a Dr. or Nurse who listen to her or touch her she would scream at them.  We tried to calm her down with books and toys and songs.  So couldn't go far, just reaching our bed to hang out and cuddle with us.  It was so hard for her to sleep there too.  We slowly tube feed her and she threw up several times.  

 Weening Whitney off the Oxygen was a success! They would go from 1 L. to 1/2 L. to 1/4 L. then Off!  They monitored her closely and had to put it back on a few times when she got really upset.  I think she misses her favorite toy to chew on but I sure don't! 

Thomas and I were both able to spend the nights with her which was really helpful.  My mom came back to bring us more formula, pillows and stuff. (we weren't planning on 2 nights...just one).  While she was there we went out to eat again to Central Deli.  Although the food at the hospital cafeteria is good, I just didn't want to go in, it would bring back to many sad memories.  We ate there almost every day while in the NyICU.

Friday, we were so anxious to go home! In the morning the said Whitney was doing really well off oxygen and tolerating the medicine and that we get to go home.  They began getting the prescription filled and covered by insurance, and getting our discharge papers ready.  We figured we'd be outa there by 2PM at the latest.  Time passed and passed, we watched the movie UP on our laptop, and played with Whitney and feed her too.  A harpist came by to play songs for all the children individually.  They wanted to take pictures and put them on there website and slide show's for the Harpist Foundation.  It was actually really nice and calming for all three of us.  They gave us a lovely CD too.  Another lady came by and gave Whitney a blanket and teddy bear.  It basically took them forever to discharge us!  They weren't messing with Whitney too much today so it was easier.  By 4PM we ordered a free parent dinner. Packed the car and were out of there!  They took out her IV at the very last minute 'just in case'. 

 You can tell my little cutie was so happy to be going home!

Then next day life went back to our normal.  Expect no oxygen!  And no, I never got "use" to it.  It was always a hassle and annoying.  I love her being free!  BUT this procedure set her back feeding wise.  Before hand she was doing great by taking all 4 bottles (asleep)!  And trying more solids.  But now,  she refuses the bottles and throws up in her high chair with just a few puffs or 2 bites of food.  It's a constant battle to feed  her, although I don't like that word because we try to be as calm and fun as we can while eating.  We are using the tube a ton right now and it's frustrating but necessary for her.  She actually lost about 3 weeks worth of weight during that week!  It makes me so so sad to see my skinny girl threw up  and not eat.  I'm doing my best to endure to the end.

Monday, May 9, 2011

Happy Mother's Day 2011

Happy Mother's Day everybody!  This was my very first official Mother's Day.  And wow, ya never realize how much work it really is until you've been a mom and then how much you really do appreciate your mom and all the other mom's out there.  They sacrifice so much to raise and nurture children. I do believe that that is our divine role here on earth.  Even if you are not a mother, you can be motherly!  Always treat children with kindness and love and honesty!  Service and patience are  also excellent quality's mother's posess.  Thank you mom for being such a wonderful mother to me and my siblings!  You truly are a great example!  And Thank you Mom in law for raising my amazing husband and an awesome family! You are also so loving towards me!  You are both fantastice Grandma's as well!   I love you!
New mommy, Alicia, holding precious daughter, Whitney, for the first time. I was 23 (almost 24)  years old and Whitney was 15 days old. I love this picture so much,  I cherish that moment always. She is looking right at me, as if to simply say, I love you mommy. 

And here we are now.  Still cherishing every moment I have with this beautiful daughter of God.  I feel humbled to have such a miracle. I hope I can be as good of a mom to my children as my moms were and are still to us. 

"Don't lose your way, with each passing day, you've come so far, don't throw it away. Live believing, dreams are for weaving wonders are waiting to start. Live your story, faith hope and glory hold to the truth in your heart. If we hold on, together, I know our dreams will never die. Dreams see us through to forever, where clouds roll by, for you and I."

I love this song, it's by Diana Ross but I also love Keali'i Reichel's version. My mom use to sing this everytime we watched the movie, The Land Before Time.

Sunday, May 8, 2011

Baby's 1st Easter 2011

After reviewing my blog, I completely forgot to post about Easter! Whoops! So here it is!

First off, I made an Easter basket for Whitney.  Thomas didn't want me to waste money to buy one, so I looked up online about how to make an Easter basket.  There were a bunch of not so easy ones, and then this one!  I remembered we had just finished a huge bucket of ice cream my sister Brianna bought to make Reese's or Oreo Shakes for.  So I quickly dug it out of recycling, washed it out, and ta-da!  Well it actually took a lot of work and I used most of the stuff I already had on hand. But it needed more than just cute paper and ribbon, so I went to the store and bought the butterflies, flowers and words. So it ended up costing more than if I had bought one! Ha Ha, but Thomas was proud that I made it!

It says, Whitney's 1st Easter 2011

I set Whitney next to her Easter basket that I gave her. (The dress is from my mom, though).  She was too busy chewing on her oxygen tube.  But she finally noticed it and started to pull out all the toys and book with some foam eggs, but no candy for her! She's only 9 months old.  Also an egg of bunnies! In the picture, she has the one stuck on her finger is and is trying to shake it off!

My mom also got Whitney an Easter basket full of fun new toys!

It's been a tradition for my family to take a picture in our new outfits before we change right after church.  So the tradition will definitely continue!  It's just so fun and I love pictures! 
Our perfect Four Generations picture!  Great-Grandma Velma Terry Barlow, Grandma Brenda Patterson, Mommy Alicia Renee Montgomery, and Baby Whitney Kaholumehekainai Montgomery.

Family Picture.  Thomas, Alicia, & Whitney.

Going for a walk out on the grass with Daddy on this beautiful Easter Sunday.  Bright, sunny, and warm with a cool breeze. Clayton is playing with the dog, Xanthia in the background :)


Baby's 1st Easter
Here's Whitney doing a macho pose!  She is getting smarter and cuter everyday.  She has an adorable personality and is a really happy, calm baby.  Unless of course I mess with her tape and nasal cannula or NG tube, or try to feed her.  She crawls pretty fast but can only go as far as the tubing allows which is about 50 feet.  She loves pulling her self up and cruising around, pulling all her toys off of the shelves and anything off the couch.  Whitney likes to sit on my lap and read a fun book.  She's has not improved with taking a bottle and only does okay with solids.  She's still in the 3rd percentile for weight.  Gaining normal amounts of weight every week but they (GI Dr.) wants her to gain catch up weight.  So she'll probably be needing the NG tube for a while longer.   

We went over to Thomas's parent's house also to celebrate Easter.  There, we got to color eggs!  Of course Thomas and his brother and sister made some very interesting ones... Ikaika made one that shaved and was all bloody, and a "dumb blond" one.  He said no offense to me! Ha Ha! Another egg had its head eaten into, brains showing,  and some kind of face disease? I don't know but it was fun.  My eggs were just colored nicely with stripes, polka dots, and Whitney initials.   We had an awesome Easter and it was way fun with Whitney!