Tuesday/Wednesday: Heart Surgery Update

The 2 bottom pictures are taken in pediatric pre-op area of the hospital just a few moments before she was taken back for surgery.

The pictures above were all taken after surgery once she was back in recovery in PICU. Becky and Heidi were her nurses that day. They were so wonderful; we really appreciated them.

Brynlyn's surgery went fabulously and even faster than they expected, with very minimal bleeding. She did just beautifully and just how they wanted her to.

They put in a pulmonary homograft into her heart to replace her missing pulmonary artery. They used the vein from a specially raised and treated cow. Hence, the cow beanie babie laying next to her in her bed.

Cows have suddenly become our favorite livestock. =)

My top tooth

Brynlyn's top tooth has come in and her other top tooth has just broken the surface and should be coming in really soon. I laughed and laughed at this picture because she just loves playing with her top tooth and always sticks it out. Soon she'll have a matching pair. Oh what a sight that will be! ha ha

G-tube Drama

So on Friday morning I got the kids off to school at 8:00 a.m., then I worked on getting Lauryn settled in with cereal, etc. I then decided I'd better check on Brynlyn and make sure all was well in the crib. I quickly noticed that her blankets around her were all wet. My immediate thought was that she had disconnected the feeding pump tube to her g-tube feeding attachment which can be common and is often called "feeding the bed." But after closer examination, I realized it was something more than that.

She had completely pulled out her "button" out of her tummy and it was tucked inside her onesie, which was also soaking wet. Aagh! She has never done this before and this button has been in since September '06. I immediately panicked and tried to remember the training from the nurses (9 months ago). Thankfully we have replacement buttons and I grabbed it and started reading the instructions on how to put the button in. The nurses made it look way too easy. (I am bummed that I didn't grab my camera and snap a picture of what her tummy looks like without the button, but I was too panicked to think of that at the time.)

The panic in this situation is if the g-tube site is open for more than about 4 hours, the "hole" to the stomach will begin to close up. The body is an amazing vessel and will immediately start to heal itself. If the hole closes up so much that the DR's can't get the button back in, then surgery needs to be repeated in order to insert the button, once again.

So after making several attempts to put it in, it just wouldn't go in. And so I called my Mom who was also at the button training. She immediately jumped in her car and started her way to my house. In the meantime, I called my husband completely frantic and he told me to call the DR. Hmm...why didn't I think of that???

It was about 8:45 a.m. by this time and the DR office did not open until 9:00. So I quickly threw on clothes and did make-up in full anticipation that they would need us to come down to their office to have their staff put the button back in. I was right.

After contacting the office, they instructed me to come down immediately. They are across from PCH (in Phoenix) so 45 minutes later from Gilbert, I got there. The nurses made several attempts at re-inserting the button, but they had no luck because the hole had already started to close up. Yikes! Then they called in Dr. Acosta (another peds surgeon) and he used a long metal tool (like a metal pencil) and he pried the hole open, basically "dilating" the hole. Yes, I believe it was as painful as it sounds. Brynlyn was so beside herself and crying hysterically. The nurses were more panicked with the fact that the harder she cried, the bluer shade she turned. I was more nervous about the button and praying the entire time that he could get it in. He finally did, and they were able to insert a slightly bigger button into the hole.

I guess she had outgrown her button and they believe that's why it was so easy to pull out. And the nurses told me that I would never have been able to get the button in because the hold was closed up too much. I certainly learned what to do in the event that happened in the future, and also ways to help the hole stay open in case the button did fall out again.

Aagh...tragedy averted...never a quiet or dull moment...I need a nap....ha ha

Cardiac Cath

Brynlyn's cardiac cath was Tuesday morning, 5-15-07 at St. Joseph's Hospital. Our check in was at 11:00 a.m.and the procedure was scheduled for 1:00 p.m. It's a very basic procedure and they were only looking for diagnostics, meaurements of blood flow, B/Tshunt performance, etc. We were able to walk her into the room and put her down on the table and hold her hand until the gas knocked her out, which took about 1 minute. Talk about your heart into your stomach when you leave your sleeping baby in that room. Now I completely understand why they don't allow parents into the OR.

So during the procedure (about 2-3 hours) we grabbed some lunch and thentracked down Becky Buendia who was also a patient at St. Joseph's. She wasin a horrible boating/tubing accident about 11 days ago. (Her story: She and her 2 friends flew off the tube and the one friend's head jammed into her stomach. 12 hours later she was in emergency surgery having 6 inchesof her intestines removed. She is doing much better these last 2 days and they are now waiting for her digestive tract to kick into gear and then she can go home. Becky, you're awesome--hang in there!)

So we got to spend this time with Sara and Becky, which was such a blessing because they are such a fun, wonderful family and it was good to see Becky doing well. After about 2 hours, they paged us and we went to the cardiac cath waiting room. Brynlyn was in recovery and coming out of anesthesia. We had a chance to sit down with the peds cardiologist, Dr. Graziano, and he gave us the report. The cath went very well. They usually go in through the groin vein to insert the wires to the heart. However, due to Brynlyn's many,many problems in the past and her previous 2 surgeries, there was way too much scar tissue to get the wires in. So they patched her up and came out of there (leaving a huge bruise there.) So they had to go through a vein in her neck to insert the wires to her heart. Her heart looks great and she has great flow through her pulmonary arteries to her lungs (which was what they fixed in her last surgery.) The B/T shunt is getting smaller and tighter and so she definitely has outgrown it and it needs to be removed and replaced with a conduit artery. So they have tentatively scheduled her for surgery on May 29th. This will be a full tetraology of fallot repair. Her case will be discussed at Cardiac Consult on May 22nd with all of the DR's and then we meet with the surgeons on May 25th and then go to the hospital for pre-op blood testing in prep for surgery. We do get to go home to enjoy the Memorial weekend. They anticipate she'll be in recovery 1-2 weeks postsurgery for recovery.

The main complication we had following the procedure is that the vein in her neck would not stop bleeding. The nurses paged the DR and he came in 3 different times to check it out. It was just a small, steady flow, but she was losing too much blood for a baby her size and so her oxygen sats would drop because she was getting weak and irritated from the constant changing of the gauze pads. She would completely soak a gauze pad with blood in about 45 minutes. So they admitted her into the PICU for observation overnight. Once she calmed down enough to sleep, then her sats started going up and the bleeding did finally stop. And she did not need a blood transfusion. They did need to insert an IV to draw blood in the middle of the night. Why they do these things at 4 a.m. is beyond me. But Brynlyn slept OK during the night and woke up looking and feeling better.

The surgeons came and did rounds this morning and they looked at a few of the pictures from the cath and thought her heart looked great and that she was a good candidate for surgery. She's healthy and strong so this really is a good time to go in. Besides, she's pretty blue and so Mike can then stop calling her his "Smurf baby." ha ha And we had many nurses coming in just to say "hi" to us. It was a mini-reunion. So atleast we know we'll be well taken care of when we go in for surgery in 2 weeks.

I love Grandma Sugar!

Brynlyn absolutely loves Grandma Sugar! They have definitely formed a special bond in their relationship. Grandma has been so "hands on" in learning everything about Brynlyn from her feeding tube to her button to her medications, etc. etc. etc. There's alot of things to learn in order to take care of Brynlyn and Grandma has not been nervous about learning any of it. And she takes care of Brynlyn so well that I am never nervous about leaving the baby behind for a few days because I know she's in great and loving hands! Thanks Mom! I hope you know how grateful we are for you.

Baja Mexico Cruise

We had such a fun time on our Baja Mexico Cruise. We went with 2 other families, the Cooks and the Pickles. The kids were all awesome and behaved so well and we had a great time with everyone. Our only port stop was at Ensenada, Mexico. We took a bus tour to the other side of the city on a southern peninsula. The weather was perfect; we couldn't have asked for a better vacation.

I love my Daddy

The Cherokee Indian Rite of Passage

Do you know the legend of the Cherokee Indian youth's rite of passage?

His father takes him into the forest, blindfolds him and leaves him alone. He is required to sit on a stump the whole night and not remove the blindfold until the rays of the morning sun shine through it. He cannot cry out for help to anyone. Once he survives the night, he is a MAN.

He cannot tell the other boys of this experience, because each lad must come into manhood on his own. The boy is naturally terrified. He can hear all kinds of noises. Wild beasts must surely be all around him. Maybe even some human might do him harm.

The wind blew the grass and earth, and shook his stump, but he sat stoically, never removing the blindfold. It would be the only way he could become a man!

Finally, after a horrific night the sun appeared and he removed his blindfold. It was then that he discovered his father sitting on the stump next to him. He had been at watch the entire night, protecting his son from harm.

We, too, are never alone. Even when we don't know it, our Heavenly Father is watching over us, sitting on the stump beside us. When trouble comes, all we have to do is reach out to Him.

Family Picture

Before church today, Mom was here to watch Bryn so we had her snap a few pictures of us in our backyard. We had not had a full family picture for a while, so this was a good opportunity to do so. The girls had gotten themselves dressed in preparation for the picture. They looked cute in their matching white shirts and pink tanks. Now we're as updated as we can possibly be. My husband won't have to sit for a family picture for a while! ha ha

Playing Peek-A-Boo with Lauryn

The other day Brynlyn was playing her favorite game: peek-a-boo. She just loves it and giggles like crazy when she pulls the blankie off your head. She loves it even better when the blankie covers her own head and she pulls it off to see your face. It's so much fun to play with her. She's such a happy baby.

i carry your heart with me

i carry your heart with me

i carry your heart with me (i carry it in my heart)
i am never without it
(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)
i fear no fate (for you are my fate, my sweet)
i want no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart (i carry it in my heart)

Poetry by: ee cummings

* For those ER watchers, this is the poem that Abby was trying to quote on last night's episode. I loved the poem so much that I tracked it down today on the internet. *

Playing with my sisters

Brynlyn's showing her true ASU spirit. I think she was definitely ready for her quality "sister time" to be over by the time this last picture was taken.

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 amazon.com. 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.

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!

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.

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.

Somewhere...someplace...today...
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.

Somewhere...someplace...today...
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...

Somewhere...someplace..today...
The tiniest hearts are repaired.

Somewhere...someplace...today...
A child's growing fast...Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...

Somewhere...someplace..today...
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...

Somewhere...someplace...today...
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...
Stop...remember...reflect...
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.