Monday, April 30, 2007

These are a few of my favorite things

These are a few of Brynlyn's favorite things in her 10 month old life.

She loves her pink silky blankie. She has a big one and a small one. She actually sucks on it to go to sleep which is kind of funny.

Her favorite music is called "Lullaby River" and "Rockabye Bunny" by Linda Danly. I bought them on My sister in law Emily told me about them and said her Mom used to play them for her. We love this music and Brynlyn gets a huge smile and giggle when she hears them start to play. Her favorite for the moment is Rockabye Bunny which we play to get her to go to sleep. What's cute is that we've all memorized this entire CD so far since we hear it every day. And so I will hear my children singing the songs if they're playing Barbies or playing on the computer. I've even heard Mike humming the songs! He usually falls asleep listening to it because Brynlyn still sleeps in our room. So I'm wondering if the music is more for Bryn or Mike! ha ha

She loves the music we play for her while she's in her crib.

She loves playing with her toys. Right now she loves teething rings because she is teething. She also has a few favorite dolls and some books that she doesn't care what the story is about, she just loves to chew on them.

She also loves swinging in her swing, hanging out in her bouncer, and playing with her sisters.

Brynlyn's 10 month birthday

April 29th on Sunday was Brynlyn's 10 month birthday! Wahoo! This is a big milestone for us. We took some updated photos to show her off. She's such a happy baby all of the time. She loves to smile and laugh. And we taught her how to wave. And she's so polite! She'll wave every time we say, "Say hi, Brynlyn!" She'll immediately just hold up her arm and wave. It's so cute.

And just so you know, in the 2nd picture when she smiles, you can see how her left lip droops down. This is commonly called Asymmetrical Crying Facies, but since hers is accompanied by a congenital heart defect, it is called Caylor Syndrome. Just your interesting factoid of the day.

Saturday, April 28, 2007

Mormon for President?

Mormon for President?

This gave me a good laugh this morning. I thought I would share it here. It is even funnier if you are LDS too but if not and you know a little about the "Mormons" it is still pretty funny. Click on the "This" link and then click on the dowload MP3 to play it. And enjoy!

Friday, April 27, 2007

CHD Heart Book

We received a copy of “It’s My Heart” in the mail a little while back. This is a free hardbound book from an organization called The Children’s Heart Foundation. It is a great resource for parents of kids who have a CHD. It is also a great way to share info about your child’s defect with friends and family. It covers normal heart anatomy and function and has descriptions of all the different types of CHDs. It also explains the different types of acquired heart conditions (i.e. endocarditis). It explains the diagnostic tests, medical equipment, corrective surgeries and medications. There are sections which discuss lifestyle issues and concerns for both children and adults born with CHDs. Plus, there is a chapter on hospitalization with lots of tips on preparation for CHD patients of all ages.

Great book. I suggest you request yours today.

The Children’s Heart Foundation

“It’s My Heart” Book

May = Heart Surgery

Well we have our month of May mapped out (in pencil).

On May 10th, we are leaving Brynlyn for a few days with Grandma Sugar (my Mom) and taking the girls over to California for a few days. We are going with 2 other families and we are taking all of the kids on a Royal Caribbean Baja Mexico cruise. It sounds very glamorous, but our exotic destination is Ensenada, Mexico. We are really excited to go though. It's just a weekend cruise and the travel rate we got was a "couldn't pass it up" type deal. We have adjoining rooms with windows in our cabin on the 6th floor. And so somehow our good friends talked us into going with them and their kids. Besides, it is Mike's 36th birthday on May 11th and Mother's Day on May 13th. So we thought, what the heck, let's do it.

You'll see in just a minute why it's essential that we GO on this cruise. It is going to be our "calm before the storm" as we found out. We are excited to be able to spend this time with the girls because the minute we get home, we'll be doing so much Brynlyn medical stuff, we felt we owed this time to them.

May 14th, we drive home from California and get home around dinner time

May 15th, we go to St. Joseph's Hospital at 10:00 a.m. for Brynlyn's cardiac catheterization and bronchoscopy scope looking into her lungs. A heart cath is done by inserting a small catheter in the top of Brynlyn's thigh near her groin. It would be carefully guided into her heart and a contrast dye would be injected. After this video, pictures will be taken that would show the way the heart and its major vessels moved the dye in and around her heart. This would give surgery and cardiology a clearer picture of her heart’s anatomy. She will be under sedation the entire time and we will stay in the hospital for 23 hours following the procedure so she can be observed and recover.

May 16th, get released from the hospital and go home, pending nothing arises that would keep us there any longer

May 17th, Mike is flying to Utah to help his parents move down from SLC

May 18th, Mike drives one of the moving trucks down from Utah

May 19th, Pat and Farrell move into their darling home in North Mesa

May 22nd, Cardiac Consult (big meeting with all of the DR's involved. They will review Brynlyn's cardiac cath and discuss her surgery, along with other upcoming surgery cases. (No, they won't let me go to this meeting. I've already asked. I just think it would be fascinating to be there!!!)

May 25th, Friday
Half Day at school/last day of school for the girls
Katelyn's Kindergarten Graduation at 8:45 which Grandma gets to attend with her
9:00 a.m., Mike and I meet with Dr. Cleveland, one of the cardiovascular surgeons. He will go over the results and discuss the upcoming surgery with us. Then, we walk over to the hospital and get checked in for all of Brynlyn's pre-operation testing: EKG, ECHO, blood work, etc. etc. etc.
Good news is that we all get to go home when we're done and go enjoy the holiday weekend. =)

May 29th, Tuesday, Brynlyn's 11 month birthday, she's scheduled to have reconstructive open heart surgery. They have told us that if she shows ANY signs of infection, they will not operate because it would be too risky. So we will pray and pray and pray for good health during this time so she will be healthy for surgery. They have told us to expect atleast 2 weeks post surgery in the hospital for recovery time. So I guess if all goes well and according to plan, then we should be home by mid-June. Then she will have about another 2 full weeks of recovery before she starts feeling "normal." Everyone is different, but they do say that child recoveries are often relatively quick in consideration to adults.

I told her tonight that if Regis Philben can have triple bypass surgery and be back on his feet 6 weeks later, then she can do it too! ha ha Either she'll grow up loving or hating Regis. =)

Anyway, that's our schedule for the month and it's going to be a wild ride. Or actually, we're just getting back on this roller coaster ride of life with Brynlyn. We'll keep you posted and let you know any change of plans, etc.

A Dose of Reality

So today, Mike went to the doctor because he was feeling like he was starting to come down with something. So after explaining to the DR why he needed medication to nip this sickness in the bud because of his "heart baby" at home, the DR asked more about her. Mike told him that she had DiGeorge Syndrome. The DR's response was, "Wow, and she's still alive!? That's amazing."

Hmm...after he shared this with me, we both felt it wasn't the vote of confidence that we might have been looking for. You know it's just so easy to get back into life and watch Brynlyn do well and not get sick and start to feel some "normalcy" return to life. And then you hear that comment and it brings you right back to what you're doing right now: trying to keep a sick baby from getting sicker.

It just makes my heart heavy and I found myself an hour later searching the internet for mortality rates for DiGeorge kids. (I haven't done that in a long time-like 9 months.) It is true that many DGeorge kids do not survive this genetic syndrome because of the many things their body is fighting off all at once. Many DiGeorge babies die within 6 months of birth because of their CHD (heart defect.) Either their body cannot handle the extra load on their heart and their heart gives up or the defect is detected too late and these babies end up dying at home within a few weeks following their birth.

Then there are the babies/kids that die from reoccurring infections to the body that they can't fight because of their immunodeficiency. I have been told many times that Brynlyn's struggles early in life will not be her heart condition. Her primary struggle for the first 3 or 4 years will be staying well and healthy while living in a world of sickness and infections.

Keeping her separate from the rest of the world is absolutely the most difficult thing we have ever done. It's tough and takes lots of arranging and missing out on things and less time as an entire family together. These are sacrifices we are absolutely willing to make for a few years in order to keep Brynlyn healthy and infection-free.

Since I can never imagine ever losing Brynlyn, I have to just quietly tell myself that she is 100% in Heavenly Father's care. She's such an angel and a teacher and a supporter to her Mom. =) I have to just remind myself that she has a mission to accomplish on this earth and she will not go before she has accomplished that mission. I'm just hoping her mission takes her a looooong time, like atleast another 80 years or so.

Thursday, April 26, 2007

Playtime with the Girls

These pictures were taken on April 14th. The girls came in my room and "borrowed" Brynlyn. They said they were taking her on a playdate. They took her to the family room and emptied out the blanket basket and made a bed for Brynlyn. She was their baby Moses (their words) and they were her Moms (yes plural -- apparently it takes a couple moms these days to raise a baby. ha ha) Brynlyn was lovin' every minute of it! But who wouldn't with such undivided attention from 3 cute girls.

Monica, our Physical Therapist

We love Tuesday afternoons because that means that Monica, from Horizon Pediatric Therapy, is going to come over and play with us for a little while. Brynlyn really loves Monica and I think she really enjoys showing Monica her progress from week to week. She really comes alive during her PT session. It's so funny to see! Her sisters really come alive during PT also. Katelyn and Lauryn always want to "help" Brynlyn learn the new techniques, etc. Aagh! It sometimes gets crazy but Monica is so great and just laughs and takes it in stride.

Lately, Brynlyn has been tolerating "tummy time" more and more. We're trying to show her that she can put pressure on her arms to help hoist her up. She's finally coming around to our way of thinking and realizing that being on her tummy is not always a bad thing. (We think that her g-tube protrudes and doesn't necessarily hurt, but just make it uncomfortable to be on her tummy.) But she's also just starting to reach further for objects and toys, so I'll give her a little resistance against her feet just so she has something to push against and she just might figure this crawling thing out yet. She's sitting up just beautifully and can now look around peripherally without toppling over and losing balance. Also, she learned the safe fall and so she can get herself out of sitting position down to lying down on the blanket. The funniest thing with that: she's so used to laying on blankets and so any other surface is unfamiliar and "not so fun" for her. If she rolls off of her blanket onto the hardwood floor, the carpet, or the tile, she immediately freezes, lays there and starts to squawk for me to come and help her. It's so funny.

We're so proud of her progress and know that PT has been such a wonderful blessing for her. We have been evaluated by a speech therapist and there will be an opening as of late May for Brynlyn. So they're going to hopefully start her speech in June.

I've attached a picture of one of our latest PT Sessions. Thank you Monica for your hard work and your continuing support for Brynlyn! We are so appreciative for you and for what you do for our family and for our sweet Brynlyn.

A very touching CHD Heart Poem

I'm just reminscing here...These are the very first pictures taken of Brynlyn, about 8 hours after she was born at Banner Mesa Hospital (just look at her perfect chest). She got to hang out in their Special Care Nursery while I got to hang out in my room working on my body's recovery. At this point, we absolutely had NO idea anything was majorly wrong. She looked so perfect and healthy! We still did not know what DiGeorge Syndrome/Anomaly was and I could never had pronounced Tetraology of Fallot. In this picture of us by her bedside, we didn't know that our lives were about to change forever and ever. And they would never be the same.

But talk about a surreal experience, having your baby almost immediately wheeled out of your room and not being brought back. Now I digress, but I was actually wondering about girls that give their babies up for adoption immediately after they're born. I have a newfound respect for these very, very special girls because not holding and hugging and having that baby by me immediately after childbirth was the most empty feeling I have ever had in my life. To all of a sudden feel life in you, have that life delivered, and then taken from you. Whoa. It was crazy. Now our family and many, many dear friends whom we love have been blessed with children through adoption. And I just think that there is a special place in heaven for the women who overlook their own life long pain of giving that baby away to another family whom they have never met, wondering most of their lives how that baby is doing, and never knowing. Wow, I have the utmost respect for them. Okay, going back to my inital reason for posting here.

The following is a beautiful poem that I read from another CHD baby, Inarah's, blog that brought tears into my eyes (alright, who am I kidding? Truth be told, I bawled my eyes out like a baby!) I just loved the accuracy in the description of the emotions and I just had to share it with you.

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...

Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...I too...
know just how this feels...
For one day...this was me.
And how they hoped this was not true...
And thought... this cannot be...I too...
know just how this feels...For one day...this was me.
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...They haven't got to hold her yet...
Without...a cord or line...They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
The tiniest hearts are repaired.
A child's growing fast...Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost forget...
That anything is wrong...
Her child seems so strong.

Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
A family says goodbye...

Somewhere...someplace...each year..
More than 40,000 families will see...What it means...
when something's wrong...They'll face a CHD.
Today...for just a moment...
Make time to tell someone you know...
"I've been changed by a heart defect".

Author - Stephanie Husted
Tonight, please say an extra prayer for strength, courage, hope, and faith for the CHD babies and families of this world.