Mylah's First Christmas

Mylah celebrated her first Christmas surrounded by family!
She was given just a few gifts, mostly what she will need in the next few months.
Even though she slept through most of the festivities, we managed to take a few pictures capturing her first Christmas with us!

First set of Christmas Pajamas:







First Christmas Dress and
Sunday Outfits with Big Brother and Big Sister:







First Christmas Stocking and Santa gifts:
(she tried so hard to hold her head up during the photo, don't worry, we didn't leave her there long)



She loved her first Christmas!
We are reminded this time of year to be grateful for our greatest and most precious gift - Mylah's life and her functioning heart. We are also reminded of our Heavenly Father's gift to us - his Son, Jesus Christ and the knowledge of his humble beginnings in a stable in Bethlehem. We hope each of you had a very Merry Christmas and that the New Year is full of happiness and good health!

Entertained

Mylah has recently become very fond of her play mat. She lays under it for minutes at a time and becomes hypnotized by the not-so-fascinating cow swinging a baby chick beneath it's legs.



She is such a good baby and content to lay under her toy while I busily make things happen around the house.



I am ever grateful that she continues to develop and grow and that toys are starting to peak her interest. Even crazy cow swinging chick type toys! :)

Tummy Time

Mylah has such a strong neck and head control that Neil and I decided to try to let her have some tummy time. She stayed on her tummy for about 5 minutes and then whimpered until we flipped her back over.



When we hold her she throws her head everywhere so we thought some tummy time would be beneficial for her. I worry about her chest and heart, but she did well.



As you can tell by the blurry pictures, her head was all over the place, but she tried to keep it balanced.



Afterward Daddy laid by her and they talked. She loves to be talked to. She is a very social baby.



We are so proud of each of her milestones and are thankful each day for her continued growth and development!

~December 1st 2011~

This Week's Appointments

Monday Nov. 28th - Today was Mylah's second Post-Op check up with Dr. Ciccolo. She is looking really good to him and he says her scar is right on track to heal just fine, until her full repair. I asked all the questions I could think of. When we would do her full repair, if she would have any spells between now and then, and if she will out grow her shunt? He expects her full repair after 6 months old. Anytime between then and one year of life. No she shouldn't have any cyanotic spells, but she could, we just have to watch for it. And yes she will out grow her shunt. When this happens will determine her full repair date. For now, he is happy with her post-op progress.

Wednesday Nov. 30th - Today Mylah met with Dr. Thomas her Cardiologist. He walked in the room and we exchanged some chit chat and then he proceeded to tell me what to look for if she has a cyanotic spell. We have seen her in the most extreme cyanotic condition (when she had her first Tet spell at the hospital) and so we know what to watch for - blue extremities, blue mouth, trouble breathing etc. He also explained to me what to do (besides call 9-1-1). He said to take her knees and push them to her chest, this will bring the blood from her extremities to her lungs and heart.

Why was he explaining all this to me you ask? He doesn't want to see her back for 2 months!! Happy Day! She is saturating in the 80 to 84's, eating and growing well (11lbs. 8 oz. - 23 inches) so he doesn't want to see her until February. We feel so blessed and are grateful for her progress.

Friday Dec. 2nd - Today Mylah had her third round of Synagis - the RVS antibody shot. She hates shots and was sound asleep when the lab tech gave it to her, but she took it like a champ and cried a little, but then fell back asleep! I am grateful that she was approved for these shots to give her extra protection this winter season!

2 months

Mylah turned two months old today!
We are so blessed to have her here, and are grateful each day for the our sweet miracle!



Here are her stats:

♥ She weighs 11lbs. 8 oz.
♥ She is 23 inches long.
♥ She wears size 1 diapers, but is almost in 2's!
♥ She wears 0 - 3 month clothes.
♥ She still nurses really well and loves it.
♥ She has slept for 6 hours straight at night.
♥ She cooed at Mommy for the first time on Nov 22nd. It made Mommy cry!
♥ She loves to be talked to and tries really hard to communicate right back!
♥ She loves to sit in the the swing and sleeps for at least two naps a day in it.
♥ She is so calm and will eat, play in her bouncer or swing for a little bit, and then go right back to sleep for a nap. She is a really easy going baby.
♥ She has what we call Elvis-hair. No matter how much we wet it down and comb it, it pops right back up! It's straight and super cute.
♥ She is fond of her paci, but will only suck on it for a short time. Then she spits it out. I guess it isn't a necessity.
♥ She has found her hands and loves to suck on them.
♥ She celebrated her first holiday during the Thanksgiving break. She mostly slept and enjoyed being cuddled by her Grandma and Grandpa H.
♥ She visited her Surgeon Dr. Ciccolo this month and he says her scar looks really good. He won't see us again until her total repair.
♥ She also visited the Cardiologist. He doesn't want to see us for two whole months! He is really impressed with her progress and just wants us to watch for hyper cyanotic spells and bring her back in February. What a blessing.
♥ She is growing too fast, and bring such a sweet spirit to our home.
Happy Two Month Birthday Mylah Leilani!
We love you!

Announcement

Months before Mylah was born, I won a giveaway on a blog for an invitation or announcement design by Tiny Prints. I normally design my kid's announcements by myself, it's just easier and cheaper. But because I won a gift card, I decided to save time and use it for Mylah's announcements.

I picked out a few, but kept going back to one announcement in particular. This one was my favorite:



Simple. Cute. Small accents of purple. Perfect.

And here is Mylah's after her photos and information were added:
(sorry for the weird layout and bad photos, I had to scan them)



I think they turned out perfect, and I was very happy with the result!

Little Things

Each of my children are so precious to me, as any child should be. Coming so close to loosing one of my children, has changed my perspective. The "little things" matter more. Things like what my kids say, do, how they react, experience, and create.
These things become memories I don't want to forget.

Mylah's beautiful baby features and the miracle of her body are photos I hope to never forget. Borrowing this idea from Pinterest, I decided to take pictures of each part of her precious little body - the vessel that we created, I carried and brought into this world. Though it was unscathed for only a few days, it now represents a marvelous example of modern medicine and skilled doctors.

{29 days old - 10/30/11}

I cherish each of her features individually and hope to never forget the beauty that is our sweet Mylah.

- Lara

Blessed

Today was a very special day, one I thought wouldn't happen for a few months. But thanks to modern medicine, and the miracles of prayers and fasting, we were able to bless our sweet Mylah today!
We are members of the Church of Jesus Christ of Latter-day Saints and are privileged through the Priesthood, to give our babies a name and a blessing during our Sunday meeting. It isn't one of what we call our saving ordinances, but it is an important one none-the-less.

So with our family and friends gathered, we blessed Mylah. And what a blessing it was. Neil has an amazing way with words, and listened to the Spirit, while blessing Mylah with those things she needed most. It was beautiful. I was moved to tears, as were many others.

After our meeting was over we invited everyone to our house for a Sunday brunch.
Nothing too fancy, but it was delicious! We served fresh fruit and dip, a breakfast casserole, cinnamon rolls, orange rolls, pumpkin scones, and mini pop-tarts. Various juices and milk were provided as well.



I rushed to have pictures taken so that Mylah could go eat, unfortunately our family of five picture didn't turn out very good, but I was glad to have captured what we could.





(Our family with Grandma and Grandpa C and Jennifer - my parents and sister)


(Our family with Grandma and Grandpa H. - Neil's parents)



Cousins played together, the playroom was put to good use, and we spent a few hours visiting and enjoying each others company, while snuggling and loving our sweet Mylah.
Those present were, Grandma and Grandpa C., Aunt Jennifer, Grandma and Papa H., Uncle Kyle and Aunt Geri and their kids, Uncle Wade and Aunt Jessica and their kids, Mylah's nurse from the PICU (who we love dearly) Laura M., Kati G. and her kids and Erik and Savannah F. and their kids! It was a house full of love! :)









Later, I snapped the must-have pictures of Mylah while she was sleeping. Wearing Rylee's dress, which is now the family blessing dress, she shined for the camera!








Thank you to everyone who came, thank you for supporting our precious girl, we love and cherish each of you!

Reality

Recently I have had a huge reality check. Huge. My baby girl has a congenital heart defect. She survived a surgery. She is home and doing well. But it all could have been so different.



The reality of it is, that one out of ever one hundred babies are born with a congenital heart defect. Our Mylah Leilani was that one. And heart defects are the number one cause of birth related infant deaths. More babies die from congenital heart defects than cancer. And yet, there is more research and money donated to childhood cancer research than congenital heart defect research.
Unfortunately anyone can have a baby born with CHD and there are no known causes, cures, or preventions for CHD.



How can you help? Create CHD Awareness, donate blood, become an organ donor, and help support CHD causes by donating time and money to research. The American Heart Association is a good place to start!



This is what we live with daily. A baby born with CHD. Though Mylah has come through her first surgery and is thriving well at home, there could still be complications. She is a fighter, she is our little hero, and she will become a survivor of CHD. For now all we do is count our blessings and find relief in knowing that our Heavenly Father charts our course. He has all control. And it is up to Him what Mylah's path will be. We are blessed with this comfort and knowledge.

Mylah for now is doing so well. I am in awe daily at the miracle that is called a BT Shunt. Modern medicine made it possible for our baby girl to be home with us, growing and developing without the noise of a hospital environment. Miracle indeed.



My days at home are sometimes hard, tiring even, but nothing is worse than imagining a life with out the sleepless nights, crying baby, and poopy diapers. She is living the normal newborn life, and we are living the chaotic, family of five life. For that I am grateful.
- Lara

Tests and Appointments

10/2/11

Today Mylah went to Summerlin Hospital to have a VCUG test and Renal Ultrasound done. The VCUG would determine if she truly does have Grade 2 Hydronephrosis in her kidneys. And the ultrasound is a follow up from the original one she had done at birth.
Upon arrival at the hospital we checked in to Outpatient Testing and then waited a few minutes. I frantically fed Mylah so she would be calm for the test.
The ultrasound tech took us back first. Mylah did really well and laid still for the whole thing.
Next we went to have her VCUG done. They had to put a catheter into her bladder, inject some die and watch her bladder empty. This would check to see if her bladder is refluxing back up into her kidneys. She didn't even cry when they put the catheter in (she's one tough baby!) and she laid still the entire time they were taking pictures while her bladder emptied! She is such a good baby.
As far as the doctor could tell she doesn't have reflux. Now we have to go see the Urologist again to see what he has to say about the results of her tests.

11/7/11
Today Mylah went to another Pediatrician appointment. She weighs in at 10lbs. 2oz (75%) and she is 22.5 inches long (95%)! Her head circumference is 37 inches. She is growing really well and her doctor is impressed. She received her second Hep B shot today as well.

11/10/11

Mylah had her follow up appointment with the Urologist today, and it was good news!
Her kidneys have been down graded to Grade 1 Hydronephrosis, and don't have any reflux.
Such a blessing. She won't need to have another scan or test done for 6 months. We are hoping everything continues to go well with her kidneys.

We are so grateful that Mylah continues to do so well. We are truly blessed.

1 Month Old

Today our sweet Mylah turned one month old! What a whirlwind month it has been! Mylah has a strength neither of us have ever seen in any other infant. At one month old she has endured more than most of us do in a lifetime. We know there is only more hardship in her future, but for now we recognize that our greatest blessing is having her here with us. Things could have turned out so different.

At one month old Mylah is such a good baby. Here are a few things about our sweetheart:
♥ She weighs 9lbs.
♥ She is 21 inches long.
♥ She loves to nurse and is really good at it. I was nervous that this wouldn't happen because she was given a bottle for 3 days at the hospital. But even after everything, she still nurses really well.
♥ She eats about every 3 hours, sometimes two and a half.
♥ She loves to nap on her tummy. All of our kids did this so it's no surprise to us. She does however sleep on her back at night.
♥ She only cries when she is really tired. She doesn't even cry when she is hungry, unless I make her wait to long.
♥ She loves to poo. (TMI?) Really, she does it ALL the time.
♥ Speaking of poo, she still wears newborn diapers, but is almost in ones!
♥ She loves to cuddle and would sleep in our arms all day long if we would let her.
♥ She is very aware for a four week old and loves to just sit and stare at you while you talk to her, she loves being talked to.
♥ She has already smiled at both Mommy and Daddy. We know she knows us and is grateful that we were by her side through all of her hard first days of life.
♥ She is very particular about how she is rocked to sleep. Each of our kids have been this way, must be the genes. She is really good to eventually fall asleep, if you stick with it.
♥ She nurses really well at night and then falls right asleep after. Her siblings didn't do this, I am so grateful that she chooses to sleep well at night.
♥ She is such a sweetheart and we are so grateful for her, everyday we are reminded that she was sent to us for a reason, she is meant to teach us something.
Happy One Month Birthday Mylah Lei! We love you!

Cuddle Time with Daddy

Neil is a sucker for a cute baby! He loves this girl...and she loves him.



~October 27th, 2011 - 26 days old~

This Week's Appointments

10-24-11
Today Mylah went to visit Dr. Ciccolo for Post-Op follow up. His partner Dr. Weinseck did her surgery, but he will do her full heart repair, so we met with him for this check up.

It's always nice to see him, he is friendly and we like him. He said that Mylah's incision looks great and that he is pleased with how well she is recovering from her surgery. He answered all of my questions and then set a date to see her back in 4 weeks.

10-26-11
Today Mylah saw a Pediatric Urologist - Dr. Hwang. We really like him. We have known him for five years because he is our oldest child's Urologist. Dallin had Hydronephrosis of his kidneys when he was born. Two surgeries later he is doing really well and we are grateful to Dr. Hwang and his team for being so wonderful. We have always been really impressed with him. We are now visiting him because Mylah was diagnosed with Grade 2 Hydronephrosis. She will have another Renal Ultrasound and a VCUG (dye scan) done next week and we will go back to see him and see if it has worsened or not. We are praying all will be well.

10-27-11
Today Mylah had a check up with the Pediatrician. I am getting used to doing this - going to the doctor three times a week - thing. She weighs 9lbs. and is 21 inches long. When the nurse weighed her I had her check again because I didn't believe her...9lbs? Wasn't she just 7lbs and tiny a week and a half ago? She has gained 22 ounces in 10 days! I asked Dr. Tenby about that, and he said he isn't concerned. It is a big/fast weight gain, but as long as it isn't fluid build up, which he couldn't see, so there is really no concern. He will just watch her and make sure she doesn't gain too much weight too fast. Overall she is looking really good and he is pleased with her progress. She will go in next week for her second Hep. B shot.

After a week of appointments, I just feel so blessed. Mylah has been progressing remarkably well and everyone is impressed with her. She amazes us daily and we are so blessed to have her special spirit in our home.

Gift Wreath

We have had such wonderful support from our immediate family lately. They have been great to stop by and visit, bring us meals, spend time with us, and show their love for Mylah.

Yesterday Neil's Mom and two older sisters, Lindsay and Meredith, stopped by for the afternoon. It was really nice to visit with them and let our kids play.

When they arrived they walked in the door holding this:



It's the most adorable gift wreath I have ever seen!

Meredith received one when her baby boy was born in September. I saw it and mentioned how much I loved it and what a good gift idea it was! She must have remembered and helped her Mom make one. It was from all of Neil's siblings and their families.

Our four year old niece, Afton, picked out the doll in the middle. She liked it because it had a heart on it. She is so sweet and very aware of the situation and loves to pray for Mylah and her heart.


The rest of the wreath is covered with clothes, shoes, diapers, baby necessities, and toys. We love it and are so grateful for this thoughtful gift. I love it so much, that I am going to have a really hard time taking it apart! I may wait a few more days and keep looking at it.
It truly was a thoughtful gift. One way in particular, is that if you look closely, most of the clothes and accessories have hearts on them. So significant, so meaningful.

Thank you Margaret Ann and Steve, Monica, Kyle, Wade, Meredith, Lindsay, and your families, for the sweet gift, Mylah loves it!

First Pediatrician & Post-Op Cardiologist Appointments

10-17-11

Mylah had her first Pediatrician appointment today.
She did really well!
The Dr. was informed of all of her heart problems and her surgery.
He was impressed that she came home 6 days after her surgery.
She is definitely our little miracle baby!
She weighs 7lbs. 10 oz. and is 20 inches long.
Almost back up to birth weight!
The Dr. refferred her to a Urologist to have her kidneys checked out.
She goes there next week.
We are hoping all is well with them and that the Grade 2 Hydronephrosis was only because she was a newborn and pumped full of fluids at the hospital.
He also started her on Amoxicillen to keep her from getting any type of infection.
She was originally on Cephelexan, but it made her vomit, so he switched her.
Overall she looks amazing and goes back in a week for another check up!

10-18-11

Mylah had her follow up/post-op Cardiologist appointment on Tuesday.
She had a quick visit by one of our favorite and the most dedicated Cardiologist's we had, Dr. Gallindo. He was the one who stayed by her side the entire day after she had her Tet Spell. He was very concerned about her and became attached quickly. He stopped by to check on our "Princess" as he calls her and I was grateful. It was really nice to see him. Next her Cardiologist - Dr. Thomas took a look at her heart. He says everything looks really good! Her O2 Sats are at 83% and she is progressing well. Best case scenario for her is to be able to make it to 6 months old or older and then have her full repair done. Unless something happens before then, that is the plan. Dr. Thomas will see her again in a month.

That night as I went to bed, I realized how truly blessed we are as a family. Everyday I get to hold my precious baby girl. I get to nurse her and give her kisses and care for her. Some parents with CHD Babies or Tet Babies aren't as lucky. We are some of the lucky ones. Mylah has done really well at home and is growing and sharing her sweet spirit with our family. We all love her so much and can't imagine our days without her!

Mylah's First Bath

10-12-11

Mylah had her first bath today. It was pretty much the first bath she has ever had. At the hospital they wiped her down, but didn't clean her very well.

She was not very happy with me for stripping her down to her diaper and leaving her out in the cold. But on a better note, her incision looks way better these days!
She kinda looks ginormous here, but she really is petite.
As soon as the washing began, she screamed her head off!

I quickly wrapped her in a towel and all was well.

All clean and looking beautiful!

Mylah is Home!

Mylah was discharged today around 2 p.m. to come home!
I stayed the night last night to be sure she was nursing good enough to come home.
She did so well and kept her O2 Sats and Vitals right where they should be!

I dressed her in her going home outfit,

We said goodbye to our favorite nurse - Laura - she's the one that reminds us of Neil's sister Meredith. We LOVED her and hope the next time we have to be at the hospital she is our nurse.As soon as I came home we cleaned Dallin's hands and let him say hi to his sister. He was so happy she was home and couldn't stop giving her kisses.
Rylee woke up from her nap shortly after and was able to see her sister.
She kept saying, "Ahh...Baby." I am not sure she realizes it's her sister. But she didn't want to leave her alone! I was feeding her and she kept asking to hold her. We are going to have to watch Rylee really closely!

We are so grateful that Mylah was able to come home so soon. She had her surgery only 6 days ago and progressed extremely well! Thank you for your continued prayers, thoughts and love. We appreciate everyone's support and constant concern. We are so blessed to finally have our precious Mylah home with us!

Post Surgery - Day 4

10/9/11
Mylah met two new goals today!
She had her chest tube taken out. It was draining any fluid that remained around her heart. They say it is the most painful part post-surgery and having it removed is a relief! They said she did really well and they were sure to give her Morphine before hand.

Mylah also had her nasal cannula removed. She is now breathing without help from oxygen!
Isn't she beautiful without all of those tubes?!
Our sweet nurse Laura text me and let me know that we could now bring clothes for Mylah to wear because all of her tubes were removed!
I didn't look at the size of the onsie I had brought and realized it was a 3 to 6 month one. We laughed because it drowned her, but she wore it anyway.
We bundled her up and she sat there wide awake enjoying time with Mommy and Daddy!

Later I tried to breast feed her and she didn't seem interested. She doesn't really like bottles either so we think she was just tired. But Daddy was finally able to get her to eat. She was set at the limit of 65 mL's each feeding. That is a little over 2 ounces and she loved it!

We are overwhelmed with the blessings we have received. Mylah has progressed swiftly and better than any of the doctors predicted. She is our little fighter and one amazing baby girl. We are hoping to bring her home soon, but again it is all up to our sweet princess. She decides when she is ready. We pray it is soon!
Thank you all again for reading her blog, praying for her, and for supporting our family. Prayers are answered and we are blessed.