Brynlyn Anna Jensen Never, never, never give up!

Fall school pictures

2011-09-14T12:55:00.000-07:00

Brynlyn's 2011 Fall Kindergarten pictures-age 5

She just looks so grown up to me. Wow, five years old!? When and how did that happen? =)

I am a total hook-line-sink when it comes to school pictures. The picture company can see me coming from a mile away! ha ha

I loved when I was younger and had my pictures taken and my Mom always bought the full package deal so I still have prints of every year of me in school and now I love it when it's picture day for my girls! This year I opted to order the CD instead of prints so I can reprint whatever pictures I want to reprint and not to buy their package deal. Don't get me wrong, it still cost a small fortune, but it's always so worth it in my mind! I always think that they'll only be this age once and so I need to make sure it's captured on film and school pictures are so classic and iconic. I'm sure (and hope) my girls will appreciate it as they grow up. =)

Enjoy your child's picture day!!!

Angel Paige

2011-08-02T11:03:00.001-07:00

Hi friends,

Yesterday I attended the funeral memorial service for a dear friend's little 18 month old heart baby daughter Paige who unexpectedly passed away due to complications with her heart defect.

This is the link to her blog where you can learn more about sweet Paige and her courageous family...

www.jamie-bloomfieldfamily.blogspot.com

It was an amazingly beautiful and heartfelt service yet we are all so sad at the loss of sweet Paige and our hearts go out to Jamie, Keith and their entire family as they begin to heal from this loss.

Paige is such a darling girl who was so full of life and she truly was such a light in this family. Please pray for this sweet family as they struggle to put the pieces back together following the loss of sweet Paige. We will remember her forever and she will always be in our hearts and we are so thankful for her strong example of happiness and courage despite all of the health struggles she fought for the last 18 months.

To the Bloomfield family, we love you guys so much and we will continue to pray for you that Heavenly Father may continue to carry you in His loving arms as your hearts begin to heal from your loss.

Angel Ethan

2009-08-23T11:24:00.001-07:00

A sweet and courageous little guy Ethan has returned home to his Heavenly Father. We just met this family last night and they had just lost their sweet one the night before. They are truly an amazing family and such an inspiration to us. I'm sure they can use all of our prayers during this difficult time.

You can read about courageous Ethan and his incredible family at www.crazyskids.blogspot.com

What a difference two years makes...

2009-05-31T00:31:00.000-07:00

This blog post is DEDICATED to Caden, Melissa and David Smith and their families, the Smiths and the Monroes.

Caden and Brynlyn share something very special and unique in common: They share the same date (May 29th) as their second heart surgery date.

May 29th, 2009: Caden's 2nd heart surgery

May 29th, 2007: Brynlyn's 2nd heart surgery

We checked Brynlyn into St. Joseph's Hospital so she could undergo her 2nd open heart surgery. This was full reconstruction and a doozy of a surgery. She came through it with just some minor bumps along the way, but she was a trooper and fought it all the way home. We brought her home 7 days later and we haven't looked back since. Now, Brynlyn is an almost 3-yr-old darling, spunky, and full of life baby girl. She has this dark brown hair that has tight curls all over her head that look like Annie. She's as smart as a whip and spunky as all get out. She can be a girl with a 'tude whenever she wants to be, but most of all, she's cuddly, cute, and sweet as can be. We cannot possibly imagine our life without our little DiGeorge baby and I can honestly say that we are so GRATEFUL for all of the challenges that come with Brynlyn, including tough days, great days, sick days, healthy days, happy days, sad days, upbeat days, bummer days...but mostly ANY DAYS that Heavenly Father lets us have with our sweet fourth daughter! Brynlyn has taught us the sacred nature and precious nature of life and how we truly must enjoy each day, each moment that we have with one another. And for these lessons and more, we are truly grateful.

So to the Smiths and the Monroes, you will look back on this very pivotal day in Caden's life and remember all of the things (good and bad) that you have learned from this experience and you will be grateful for them all, for these experiences are shaping you into the person that God wants you to be.

In a few years from now, Caden will be jumping and hopping around as a happy toddler and you will be so grateful for everytime you have to pull him down from climbing on the table and furniture, and you'll remember a day a few years before, when he was having his heart worked on...........

Brynlyn in recovery, fresh from surgery. And to answer your question, NO, you never, ever get used to seeing your child like this.

All of her medications, tubes, monitors, keeping her in check. Thank heavens for modern technology. I'm afraid to say that Brynlyn would never have survived crossing the plains with the pioneers.

Me and Brynlyn in pre-op just moments before surgery. I was wearing my little Gap T-shirt with a heart on it that said "Sweet Heart" and this darling necklace that my dear friend (and heart mommy April Layton) gave to me that is in the shape of a heart and says CHD (congenital heart defect). The look on my face says, "And you think you're taking my daughter WHERE to do WHAT? I don't think so!!!!!" ha ha

Just a few minutes after this, after they took Brynlyn to pre-surgery prep, I spent the next 20 minutes in the bathroom crying my eyes out. Yep, just another day, just another heart surgery.......

Brynlyn with Daddy right before surgery. She was a chunky monkey, and technically in congestive heart failure. Yep, she needed this surgery. Thank heavens for a wonderful team of doctors and nurses and hospital and staff that took such great care of us. But quite honestly, I don't care to see them for a while. I think I'll keep my baby at home with me and enjoy her for a little longer before I have to take her back to them. =)

So Caden and Family, Hang in there! Fight the tough fight, and never give up. You have people all over the world praying for you and for Caden's recovery. Try to stay optimistic at all times and always know that God is holding Caden's hand through this. Faith and Hope (and lots of chocolate) will get you through many, many tough days.

We love your family and we are always thinking of you. Please let us know if there's ever anything we can do!

love,

The Jensen Family

Caden Smith

2009-05-31T00:15:00.000-07:00

Hi there,

Our dear little friend Caden Smith just underwent his 2nd surgery to repair his Hypoplastic Left Heart Syndrome. He and his parents had a rough day (and for you heart mommies and daddies out there, you know exactly what that means.)

They could use all of our faith and prayers to help them through this difficult recovery process. I know they would appreciate it.

You can read more about sweet little Caden at:

www.thesmithsbaby.blogspot.com

We wish you all happiness and good health!

Heart Poem

2009-01-25T14:37:00.000-08:00

Heart Poem...

anonymous author

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea.

So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared.

She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy and daddy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart".

"Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, whenever that may be, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Jersey Anderson

2009-01-07T11:08:00.000-08:00

Little sweet baby Jersey Anderson earned her angel wings on Monday, January 5th, 2009, as she left this world and now lives in heaven with our Heavenly Father. Our thoughts and prayers go to her oh-so-sweet family, the Anderson family, as we all mourn the loss of their sweet baby.

You can read about Jersey girl on their wonderful blog at http://www.andersonsavenue.blogspot.com

We send much love to the Andersons at this difficult time. Jersey has had such an amazing impact on so many lives and her ripple effect of love will be felt throughout my life and so many other lives forever. Thank you for sharing your baby's courageous journey and tough fight with us. Your entire family's strength, courage, hope, love and faith has been a testimony to me and to my family. We will continue to pray for you all for peace and comfort and love and for Heavenly Father to hold you in the palm of His loving hands during this very difficult time.

Love,
The Jensen Family

New Family Blog

2007-08-04T00:57:00.000-07:00

Hi guys

So we now have a new family blogspot I would like for you to check out. I will still be posting on Brynlyn's with her developments, health issues, etc. But the new family blog will be where I'll be posting most of the posts that have to do with the kids, us, life in general.

The blog is: MSJensenFamily.blogspot.com

I consider this a big step in the right direction for the Jensen family.

Thanks for your love and support and for checking out the blog. It's therapy for me and I'm grateful to have people reading it. It helps me to feel as if I'm sharing this experience with others.

I can sit myself up

2007-08-04T00:52:00.000-07:00

This is HUGE news!!! Thursday we had a fantastic physical therapy session with Monica. Brynlyn was just rockin' and rollin' and really showing off for her. So it completely wiped her out for the rest of the day. BUT...she was super close to being able to pull herself up from the lying down position. Her left arm is stronger than her right so far and so if she's on that side, she just needs a little nudge and up she goes.

What's so great about Brynlyn is that she's so smart and it only takes one time to show her something and then she's trying to do it. It may take a little while for her to get it, but she knows just what to do.

So tonight, she was playing on the bed with Daddy. This is a nightly ritual that Brynlyn just loves. And she was kind of leaning on Mike and up she went. She just pushed off of her arm and sat herself up.

And then this morning, I woke up and looked over to Brynlyn's crib and she was already awake and sitting up and waiting for me to wake up and come and get her. It was sooo sweet!

This is so huge for developmentally and we're thrilled. Now, we're working on her on hands and knees (doesn't care for this too much.) But we're working every day and building her endurance. She's army crawling right now, but crawling on her knees is the next big step for her.

I'll keep you posted. But Hooray for Brynlyn!

Diagram Links

2007-07-29T23:31:00.000-07:00

Here are the links to the heart diagrams that I posted below. These pictures helped me to see the important and distinct differences between a healthy heart and a Truncus Arteriosus heart defect.

Healthy Heart: www.med.umich.edu/cvc/mchc/normheart.htm

Truncus Heart: www.med.umich.edu/cvc/mchc/partrun.htm

U-M CVC - Truncus Arteriosus

2007-07-29T21:52:00.000-07:00

U-M CVC - Truncus Arteriosus

Hey guys,

Check out this webpage if you want any information on Brynlyn's heart condition. It's still fascinating to learn about all of the things that were not formed correctly on her heart and it's amazing to see how they all work together. The body is such an amazing vehicle and every healthy baby is an ABSOLUTE miracle, especially now that I see firsthand all of the things that can go wrong during development, etc.

But of course, there is a PLAN in all things...yet, it's still interesting to learn about all of this.

July 8th: Sleeping in my stroller

2007-07-13T14:53:00.001-07:00

July 8th: Brynlyn was hanging out in her stroller and eating her lunch while she was watching me do my hair. And eventually she just fell asleep. Sweet baby! We just love her.

My Aunts Love Me!

2007-07-13T14:49:00.000-07:00

These are 2 of my Daddy's sisters: Kristen and Kim. And they love me like crazy! When they were here visiting last weekend, it was great because between these two Aunts, I never had to be put down! They played with me and gave me tickles on my toes with their long, pretty nails. They held me and rocked me and even sang fun songs to me. It was so much fun playing with them. I hope they come back soon!

I love my Aunt Kristen and Aunt Kim!

July 4th: Happy Fourth of July!

2007-07-13T14:28:00.000-07:00

Happy Independence Day!!! God Bless America!!!

June 29th: 1st Birthday Party!

2007-07-13T14:23:00.000-07:00

Scenes from Brynlyn's 1st Birthday Party. She thought it was great fun and she thinks she needs a party like this every month!

June 29th: Brynlyn and Granda

2007-07-13T14:05:00.000-07:00

Brynlyn loves her Granda! These darling pictures were taken at Brynlyn's 1st birthday party on June 29th. We reflected that day in how far we've come in a year and about the many miracles that we witnessed with Brynlyn during this year. It surely has been a year of many blessings in trials. And we are grateful for these experiences because of the many things we have learned and for all of the ways we have grown stronger.

June 23rd: More swimming!

2007-07-13T13:59:00.000-07:00

So I love these pictures of Daddy swimming with the girls. And I'll probably end up with one million pictures of the girls in the swimming pool is summer but they're just too cute and it's too much fun to resist taking these pictures. Brynlyn is doing really well and feeling great these days. We are enjoying her health right now and grateful for every healthy day that we get!

Happy Summer Swimming!

June 20th: Jackson Monroe

2007-07-13T13:55:00.000-07:00

Brynlyn and cousin Jackson Monroe. To put this into perspective, Jackson is 4 months old. He's in the 90% for weight and 75% for height. Brynlyn is in the 1% for height and weight. Jackson, you cute boy, can Brynlyn borrow a little bit of your chub???

June 17th: Nana Curtis

2007-07-13T13:51:00.000-07:00

This is the first time Brynlyn has ever met her Great-Grandma Nana Curtis (Mike's Mom's Mom.) Because of all of her hospitalizations and immune system issues, we've never been able to take Brynlyn over to meet her great-grandparents. And Nana and Bompa are not well enough to come over and visit. So this was a real treat for her to meet them on Father's Day.

June 20th: I can eat!

2007-07-13T13:46:00.001-07:00

This is the first time we are every able to start feeding Brynlyn because of her laryngotracheomalacia that she has had since birth. As she grows, her ability to eat correctly improves. So instead of the food going down her trachea and her "aspirating" her food into her lungs, the food can now go down her esophogus and into her stomach. We are starting with thicker stage 2 food, just not lumpy foods. Because of the thicker consistency, the food is able to slide down easier for her. So far she is loving it and things are going well.

Each week Sarah Hales, our speech therapist, comes to work with Brynlyn on eating. She feels that Brynlyn is make tremendous progress with the fact that she even wants to eat and expresses interest in it. So far, it appears that she has no oral aversion. Wahoo!

June 20th: I love swimming!

2007-07-13T13:33:00.000-07:00

Swimming with Brynlyn is so much fun, can I even tell you. Her love of the water is already apparent. She isn't able to be out there too long because the heat causes her heart to work extra hard. But the water is great for buoyancy because she isn't supporting her entire body weight so it actually gives her heart a rest. Hmmmm....Catch 22!!! So we'll compromise and take her swimming in the morning before it gets too hot. She loves it!

June 17th: Father's Day

2007-07-13T10:52:00.000-07:00

Happy Father's Day 2007!

June 14th: Swimming with Grandma Sugar

2007-07-13T10:45:00.000-07:00

All of the grandkids love playing with Grandma Sugar. They loved this day with her by the pool.

So much fun! We love Grandma!

June 9th: Brynlyn's 1st almost dip in the pool

2007-07-12T23:23:00.000-07:00

This was Brynlyn's first time out at our pool ever. I think she was really unsure about it at first, but seemed to like it just as long as Dad had a firm grip around her waist.

The Heart & Lung Institute Group

2007-07-12T02:36:00.001-07:00

The top picture: Susie and Brynlyn with heart surgeon Dr. John Nigro.
The 2nd picture: with Dr. Nigro, Stacey Grohall (Nurse Practitioner with the surgeons), Dr. Steve Choi (Cardiac Intensivist for the new cardiac floor).
The 3rd/4th picture: Getting an echocardiogram
The 5th picture: Hanging out on the bed, feeling so much better

The billboard

2007-07-12T01:51:00.000-07:00

So this is our billboard located by the hospital at Central and Thomas. This was so much fun to be a part of. We were thrilled to be asked. When we went back in for surgery, we would say that Brynlyn was there on her "publicity tour." ha ha Go check it out! And say "hi" to my fan club that might be living underneath the sign. =)

Monday/Tuesday/Wednesday: We're home!

2007-06-06T10:14:00.001-07:00

Granda Jensen holding Brynlyn
Candace Jensen holding Brynlyn
Barbie Sykes Thornock holding Brynlyn
Grandma Sugar Thornock holding Brynlyn

Susie and Brynlyn met Cliff, Jenni, Kaden, and Kaleb who were also staying at the hospital post surgery. These two little twin boys have identical heart defects called hypoplastic left heart. They are the sweetest guys and it was so much fun meeting them.

Sat/Sun/Mon: So far, so good

2007-06-04T17:02:00.001-07:00

These are some pictures taken on Saturday and Sunday when Brynlyn was in recovery. She was feeling so much better and already starting to look better. But we still had to spend the weekend in there just to finish recovery. They are taking her for a modified barium swallow study on Monday to see if she has the ability to swallow and eat real food.

Friday: It's a good day in recovery

2007-06-01T11:05:00.000-07:00

Well she is definitely feeling much better today and was able to enjoy a visit from Grandma and Grandpa Sugar (Thornock.) And she loved it when Daddy held her. I just love these pictures of her poking her face out of the crib bars. I'm sure she just wanted me to "break" her out of there. ha ha So glad things are getting better with her.

Thursday: One step forward, two steps back

2007-05-31T13:49:00.000-07:00

Thursday, May 31, 2007

Today was kind of a yucky day. She had a bad reaction to morphine, they believe. She really freaked out and threw off her recovery for a day. Because she was so agitated by her nasul canula, they needed to tent her so she could get oxygen because he O2 sats were so low. She hated the tent and was still feeling the effects of the anesthesia, so she was very unconsolable which was difficult. Thankfully, they continued to keep her very sedated per our request until she could have the tent taken off of her.

Tuesday/Wednesday: Heart Surgery Update

2007-05-31T02:00:00.000-07:00

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

2007-05-21T08:40:00.000-07:00

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

2007-05-20T00:47:00.000-07:00

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

2007-05-16T23:33:00.003-07:00

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!

2007-05-16T23:33:00.001-07:00

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

2007-05-16T23:32:00.002-07:00

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

2007-05-07T12:59:00.000-07:00

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

2007-05-06T23:28:00.000-07:00

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

2007-05-04T09:51:00.000-07:00

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

2007-05-04T08:41:00.000-07:00

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

2007-05-01T08:19:00.000-07:00

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

2007-04-30T13:48:00.003-07:00

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

2007-04-30T13:48:00.001-07:00

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?

2007-04-28T23:33:00.000-07:00

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

2007-04-27T01:28:00.000-07:00

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

2007-04-27T00:55:00.000-07:00

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

2007-04-27T00:24:00.000-07:00

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

2007-04-26T23:53:00.000-07:00

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

2007-04-26T23:39:00.000-07:00

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

2007-04-26T23:29:00.000-07:00

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.

Sleepy heads

2007-03-30T18:02:00.000-07:00

I came home tonight after running some errands and this is how Brynlyn had fallen asleep. Mike had been scratching her back to help her fall asleep and I think she put him to him to sleep! So sweet. And notice how Brynlyn's silky blanket is pulled right up to her mouth. She has to suck on her blankie to go to sleep. Yes, I have tried pacifiers till I'm blue in the face but she refuses. She thinks they are great toys! ha ha

I cannot resist a sleeping baby, or a sleeping husband.

Happy Easter!

2007-03-30T17:56:00.000-07:00

Brynlyn is 9 months old!

2007-03-30T17:49:00.000-07:00

Happy CHD Awareness Month!

2007-02-18T17:49:00.000-08:00

Brynlyn and her family wishes you a Happy Congenital Heart Defect (CHD) Awareness Month!

These are the latest pictures of her taken on (2-16) Friday before her DR appointment. She finally graduated to 9 month clothes and this was the first outfit she was able to wear. Wahoo! She looks pretty big in this picture (and in comparison to where she came from) she is getting bigger. She now weighs almost 16 pounds. She just had a big growth spurt so we're so excited about that. She's doing well and currently only fighting a yeast infection and thrush (both are extremely common for her.) But atleast she doesn't have any cold or congestion. We are grateful for good health whenever we can get it. Anyway, our little Sweetheart wishes you a Happy Valentine's Day and CHD Awareness Day!

Could I be any happier and cuter?

2007-01-23T13:21:00.000-08:00

I just had to share these few pictures with you. Brynlyn was in such a happy mood today so I grabbed my camera and started shooting away.

She is feeling so well and has been sounding so clear for the past week. We don't have to go back to the next DR appointments until next week. So it's nice to have a week off from the doctor. Maybe THAT'S why she's so happy!

Granda came to visit

2007-01-16T21:49:00.000-08:00

Granda came to visit! She actually came for Great-Uncle Denzel's funeral, but we got to spend the day with her. She had not seen Brynlyn since October and was utterly amazed at how she has grown and at how good she looks. They had some fun bonding time together. And even though Brynlyn keep giving her a look, and then making sure Mike or myself was around, we know she loved it when Granda held her and talked to her.

Come again soon Granda.

My big sisters love me

2007-01-16T21:47:00.000-08:00

Lauryn and Katelyn love holding Brynlyn whenever they get the chance. Of course the first thing we ask them, "Did you wash your hands?" We have Purell bottles (big bottles) all over the house, so there's no excuse. And Brynlyn absolutely loves when she's held also. Look at the picture above, no family resemblence there, right! I cannot believe how much those two girls look alike. We definitely drew from the same gene pool when those two gals were created.

The Vest

2007-01-16T21:44:00.000-08:00

Well, this is "the vest." It is a pulmonologist's treatment tool. It's very commonly used for kids with CF (cystic fibrosis.) I like to call it the "shake and bake" because it literally shakes the mucus free from the lining of the lung walls and so it can be deep suctioned out. We also call it "the motor boat." ha ha Brynlyn didn't mind it so much. She usually would just fall asleep while she was wearing it because it would just rock her to sleep. We put Lauryn on the vest also because she was fighting pneumonia at the time also. She thought it was great for the first 20 minutes, then she wanted it off. ha ha I really like the vest because it helped to cure both of these girls of their infections.

Back in the hospital

2006-12-31T16:33:00.000-08:00

Well, we were just released from another few days in the hospital. On Wednesday 12-27, by suggestion of our pediatrican, we were sent to the ER at St. Joseph's. At our DR appointment that day when she was scheduled to get her 3rd Synagis (anti-RSV) shot, she was having difficulties breathing and was very congested. After checking her Oxygen saturations (SATS) they were only coming up about 65. She has been breathing at about 80, so this was quite a drop. She was retracting a bit while she was struggling to get enough oxygen to breathe. So our pediatrician told me that she really didn't want us going home just in case anything might happen, so she strongly urged us to go right to the ER.

So I called Mike and met him halfway to the hospital and Mom came and picked up the girls. We then called the heart surgeons and they told us to go to their office before we went to the ER. They thought she needed to be admitted immediately, so they called PICU and found a bed for us. We were so grateful to be avoiding hours and hours waiting at the ER with many other sick, RSV kids.

At first they were concerned that she had a heart infection because the echocardiogram they did on her was showing that she was having lots of leaking from her tricuspid valve (which we had already known about.) So one of the cardiologists went over to the Mesa office to personally view the results of that last echo done in November just to compare the two. They found that it was not any different. Thank heavens. We were quite relieved because the treatment for a heart infection is 8 weeks of IV antibiotics. Whew...

So they continued to run blood tests, testing for RSV and other bacteria and viral infections. Everything came back negative, so they concluded that Brynlyn was just fighting an unknown viral infection and she would just have to let it pass.

They started with breathing treatments every 4 hours which includes CPT (chest pats) and deep suctioning of the lungs. They pulled out quite a bit of fluid out of her lungs, so that hopefully would help the passing of the infection.

She started to look better clinically so they released her from ICU on Friday and then released us on Saturday around 1:00 p.m.

She is very happy to be home and has slept almost nonstop. (I forgot how much sleep you miss by being in the hospital.) We are happy to have her home also.

The interesting thing is that Mike and the girls were all packed up to leave on Thursday to go to Utah for New Years. They were going to be leaving early the next morning. It is just another reminder to us that you just never know what's ahead in the future and you never know what's going to happen from day to day. You just have to plan as best as you can and "roll with it" when plans suddenly change.

Merry Christmas!

2006-12-26T16:07:00.000-08:00

Ya gotta love Christmas clothes. Brynlyn looked oh so cute in these clothes. We loved the touch that the red/white socks added to her ensemble. Christmas is such a wonderful day of the year, and a huge milestone for Brynlyn. We're so happy she is here with us and doing so well on this festive holiday.

Story Time

2006-12-26T16:06:00.000-08:00

This is so darling! Lauryn is reading a story of "The Littlest Christmas Tree" to Brynlyn while Katelyn holds her. Brynlyn was so interested in what her big sisters had to say to her. You would think that this was the best story ever!

The Jimmy Leg

2006-12-13T09:48:00.000-08:00

Brynlyn does the funniest thing. She sticks her leg up in the air and just holds it there for seconds at a time. It's always the left leg, never the right. Since Mike is such a die-hard Seinfeld fan, he has nicknamed her leg "The Jimmy Leg" after a Seinfeld episode. He will say to her, "Brynlyn, show me the jimmy leg." And she will stick her leg up. It's such a crack up. I really think that these two need to take their show on the road! ha ha

Say cheese and meet cousin Abby!

2006-12-12T21:10:00.000-08:00

I love these pictures. They were taken at Thanksgiving time. We were having a very large family reunion and unfortunately, Brynlyn could not take part in any of the festivities because she was being quarantined to keep any illnesses away from her. Well one night, all of my siblings and their spouses came over late late late to eat and scrapbook and play cards. It was such a fun time with memories I'll never forget! I took this picture with Brynlyn's back towards me because I had to show you how many people were checking her out and trying to get her to smile. That was the funniest picture of all! And Brynlyn was loving all of the attention.

(going clockwise from the bottom:)

Mike holding up Brynlyn's head, Aunt Sandy and new cousin Abby, newlyweds Robby and Emily, Aunt Connie, Aunt Barbie.

The bottom picture is Brynlyn and Abby. Abby was born 2 weeks before Brynlyn in June. So they are destined to be buddies. I was curious to see the size difference, developmental and behavior difference. Brynlyn was smaller than Abby and definitely not quite doing developmental things that Abby was doing. In the hospital, they told me that each day in the hospital, puts an infant about 3 days behind in development. I didn't believe them until I see it now. It's true the Bryn is behind. In fact, she's almost 6 months, but really she's doing 3 month developmental things. I know she'll catch up, and she's going to start getting physical therapy and speech therapy. But I do find it very interesting regarding the delays just because of the hospital stays.

Brynlyn can hardly wait until she and Abby can play together. I know they'll be fast friends.

Simply worn out

2006-12-12T21:09:00.000-08:00

I absolutely cannot resist this cutest baby! I love the little dimples in her elbow on her arm. It gives me so much relief to see "chub" beginning to form on her. I know she's gaining more weight and feeling better each day. I love how she holds her hands when she sleeps each night. I love that she still loves Piglet. (Piglet is a very loyal friend who has been by her side since the beginning.) I love this bunny that is laying on top of her head. It is absolutely the softest plush animal ever. And Brynlyn loves it and coos and kicks her legs whenever we rub the bunny ear up against her cheek and face. She also loves it when it is laying against the top of her head. It's the funniest thing, but when she was in the hospital, we would always lay a beanie baby up against the top of her head. She loved it and I think it gave her a sense of security. Ever since then, she loves it when something is laying against the top of her head. I love it that she sleeps with her mouth wide open. That is SUCH a Jensen thing. Daddy and Lauryn do that every night and love that Brynlyn gets that from them.

Photo shoots, doctors, and speeches...oh my!!!

2006-12-12T21:02:00.000-08:00

This has been another busy couple of week for our little superstar.

Nov 29th, Brynlyn and I were invited to be a part of a photo shoot down near St. Joseph's Hospital. They are redoing some of their billboards for a new heart campaign and they wanted Brynlyn on their billboard! Yeah! So Mike and I went down with her to have our picture taken with her. There will be an adolescent boy, heart patient, also on the billboard along with a woman who is a heart patient. They billboard will be at Central and Thomas. They will probably put the billboard up in mid to late March and it should run for about 6 months. SO...we were very honored to be asked and it was so much fun to go and be invovled in this photo shoot. We'll keep you guys posted as to when it's going to be put up, etc. We were thinking that the timing might be perfect if Brynlyn goes back in for surgery in March.

Nov 30th, she had her 4 month pediatrican visit and got another Synagis shot with some other immunization shots. Yikes, those really aren't any fun at all. You'd think after 4 kids I would be used to shot days. Nope, they still hurt just as much as they always have. The shots really throw Brynlyn and it takes her about 2 days to recover, poor thing.

Dec 6th, I was called up on Tuesday the 5th and asked to fill a guest speaker spot at a Heart Walk Kick off Luncheon down at the hospital on Wednesday, Dec. 6th. I was really nervous as I was preparing my remarks, but if there's anything that Thornocks can do, it is to TALK!!! We were all born with the gift of gab. ha ha So I wasn't nervous per se about the speech itself or the delivery. I just wanted to make sure I made an impact on these committees so that they would be inspired to go out and do fundraisers and raise money for the heart program at the hospital. They loved seeing Brynlyn and just oohed and ahhed over here when we introduced her to them following my speech. She was certainly the hit of the luncheon for sure! The photos above were taken following the luncheon at our house. (Check out Brynlyn's darling designer denim dress. Thank you to Angie Cook who went shopping for Brynlyn in NYC at H&M. Love it and we were so glad for an opportunity to show it off!!)

I felt the speech went very well and was very pleased with the outcome. They were quite receptive and it turned out to be such an enjoyable experience. I'm grateful for the chance I had to go down and thank them for the work they had already done and would continue to do.

Dec 7th, back to Dr. Stock, cardiologist, for EKG and follow up appt. He says her heart looks great and he doesn't need to see her again until mid January.

Whew...time to take a nap...ha ha

Our very own Beanie Baby

2006-12-02T18:23:00.000-08:00

We have our very own beanie baby! Brynlyn's crib and set up is in our bedroom. And our room is the coldest room in the house. It gets very chilly at night, so we have started putting on this pink knit hat to keep Brynlyn's head warm. I can't say that she actually likes it and it is usually off of her head by the morning. But she looks so cute in it that I couldn't resist a photo shoot.

Bryn is doing great. Last week she received her 3rd Synagis shot (to prevent RSV). She also received her 4 month immunization shots. She is weighing in at 12lbs. 12oz. She is 23 3/4 in. long. She is charting on the 11th percentile for weight and 10th percentile for height. Hey, she may be small, but atleast she's proportionate! ha ha They say she'll have substantial weight gain following her reconstructive surgery.

She is so happy pretty much most of the time and is generally good natured. She still sleeps so much each day. She gets tired really easily so her wake times are fairly short. She is doing well, so far so good. We are still very cautious about taking her anywhere. She gets to go to DR appointments and that's it. This is hopefully to prevent any wintertime sickness.

We're having a fun time with her, just trying to enjoy and take it day by day. That's the latest.

Special Pictures by Joy Carmona

2006-11-08T18:10:00.000-08:00

These pictures were taken by our very talented friend Joy Carmona. They turned out amazing and we just couldn't wait to share some of our favorites with you. Thanks for everything Joy. You are amazing and we are blessed because you are sharing your talents with us. Love ya...

Next Heart Surgery ???

2006-11-08T18:06:00.000-08:00

Today (November 8th) we visited the pediatric Cardiologist, Dr. Stock. He is such a terrific DR and we are so lucky to be going to him.

They did an echocardiogram (DEFN: An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. These echoes are turned into moving pictures of your heart that can be seen on a video screen.
Transthoracic echocardiogram (TTE). This is the most common type. Views of the heart are obtained by moving the transducer to different locations on your chest or abdominal wall.

The results looked very good and he said her heart is functioning very well. She has some leaking in her tricuspid valve, but apparently she has had that since birth so he's not overly concerned about it because the volume has not been increasing. He will have them address that at her next heart surgery. (DEFN: The tricuspid valve is on the right side of the heart, between the right atrium and the right ventricle.)

Also, they did an EKG (DEFN: An electrocardiogram (EKG, ECG) is a test that measures the electrical signals that control the rhythm of your heartbeat.)

Those results looked great as well and nothing had changed since her last EKG about 4 weeks ago. So he is taking her off 2 of her medications: captopril and lasix because she's functioning so well and has too many meds as it is.

She has gained 1 pound in a week and she now weighs 11 pounds. They are so pleased with her growth and she's growing right on schedule (and even a little ahead.) They charted her on a growth chart today and she is between the 15th and 20th percentile. Wahoo!

The indicator of when they will do surgery next is contigent upon her weight and oxygen saturations (SATS). She is currently "satting" between 75 and 85, and really she is about 82/83 range. As she grows, her sats will drop because of the additional work on her heart and shunt. Dropping sats is what they will be looking for and expecting to see with her growth. When she is satting in the high 70's, 79, 78, they will schedule a heart cathetrizaion. Just to give you an idea, a "normal" body needs 95% to 100% saturations in order to be receiving the proper amount of oxygen to function. Her saturations are lower because her heart is not "fixed" yet and she has mixed blood in her veins.
(DEFN: Cardiac catheterization is a test to check your heart and coronary arteries. It is used to check blood flow in the coronary arteries , blood flow and blood pressure in the chambers of the heart , find out how well the heart valves work, and check for defects in the way the wall of the heart moves. In children, this test is used to check for heart problems that have been present since birth (congenital heart defect).

This heart cath will most likely be done in January. It will be an overnight procedure. So we'll get another night at St. Joe's. We are missing all of our nursing friends there. So that will be a good excuse for a reunion. Then depending on how that looks, they will possibly schedule surgery for late Spring (unless Brynlyn tells them differently.) When she is consistently satting around 75, they will go in and do surgery.

We are really enjoying this time with her. It is still very scary and busy and late nights and always checking her breathing and giving meds and trying to do home PT, and playing, and tummy time...aagh...yes, I need a nap. ha ha

But we are being so blessed and Brynlyn is being blessed. She is doing so well (knocking on wood) and we are grateful to see her thriving as well as she is.
.

Pumpkin (cutie) Pie

2006-11-08T12:20:00.000-08:00

BRYNLYN WISHES YOU A VERY HAPPY HALLOWEEN!!!

My first real bath

2006-10-17T18:44:00.000-07:00

FINALLY!!! We get to bathe this child with something other than a sponge. Since Brynlyn now has the g-tube, she can be submerged in water and get a real bath. Imagine not being able to bathe your baby for the first 3 1/2 months of their life. It was a really interesting challenge and I think it just about drove Mike crazy (we all know what a clean freak he is! LOL) She wasn't liking it at first, but then she eventually got used to it and realized it wasn't a form of human torture after all. It was a nice feeling to know that she was then squeaky clean.

If you think I'm cute...

2006-10-17T17:35:00.000-07:00

Well I just couldn't resist this one. This cute t-shirt was given to us with one of our previous girls from Mike's grandma, Nana Curtis. The shirt says: If you think I'm cute, you should see my mommy! Hmm...how can I disagree?! ha ha

Big shout out to Raquet and Jog fans in Tyler, Texas! Giddy-up!

The Nutriport G-Tube

2006-10-15T12:37:00.000-07:00

Well, as promised, here are pictures of the infamous Nutriport G-tube. This contraption is a great thing (if you have to have it.) Yet, it has been quite interesting to get used to. In fact, I'm still learning little tricks and tips. This top picture is how the tube fits into the g-tube for feeding time. This is what Brynlyn looks like when she's eating a meal. The green clasp covering the tube actually locks it into place so if she rolls over at night, it won't come out and "feed the bed." Since Brynlyn is continually fed all through the night (from midnight to 7am) this is really an important feature because I'm not always right there watching her. (I do have to sleep occasionally, you know.)
The bottom picture is what the tube looks like when there are no feedings going on. It is fairly low profile to her skin so it doesn't catch very often on things. I am still very cautious when I work with it. I'm nervous it might come out, even though it's quite secure in her stomach. I definitely like this much better than her foley tube they put in after fundo surgery, but it's still scary to work with new devices. Give me a few weeks and I might be a pro afterall.

A couple of busy weeks

2006-10-10T16:29:00.000-07:00

We have had our share of a few busy weeks. Many of our days are filled with DR visits. On Monday (10-2) we saw Dr. Finch, the GI DR. He thought Brynlyn's weight was doing okay (she was weighing about 9 lbs) and so he didn't change anything with her feeds. She just needs to be a feeder and grower now. We'll go back and see him in 6 weeks for another follow up visit.

Tuesday (10-3) we saw Dr. Stewart. She thought Brynlyn was sounding great and very clear. She did hear a few crackles in her lungs and so we have switched her breathing treatments to every 4 hours to continue her clearing of her lungs from the pneumonia. Then Tuesday afternoon, we had a little scare with her medications. Our pediatrican caught that Brynlyn was receiving too large of doses of calcium and that the medicine had not been compounded as it should have. She had been receiving almost 9x more than the dose she should have been receiving. So they sent us STAT to the cardiologist's office to have an EKG done. It showed that Brynlyn has an "abnormal heart rate" which is correct because her heart is not fixed yet. But the "abnormal rate" was normal for her. So they were okay with what they saw. They were specifically looking for arrythmia (DEFN: An arrhythmia is an abnormality in the heart's rhythm, or heartbeat pattern. The heartbeat can be too slow, too fast, have extra beats, skip a beat, or otherwise beat irregularly.) They did not see anything, thankfully. Then we rushed over to the Sonoran Quest Labs to have Brynlyn's blood drawn for a CBC (complete blood count) and some other tests. The test results came back normal, amazingly. Another blessing from up above.

Wednesday (10-4) we had a home visit scheduled with CRS (Child Rehabilitative Services). They needed me to sign documentation in order to get Brynlyn signed up for the program. It's a program that is provided by the state. With Brynlyn's lifetime diagnosis of DiGeorge, she qualifies for it. This will help with DR visits, some financial aspects and follow up.

Thursday (10-5) we had an appointment with Dr. Christine Mohler, our pediatrician. She is so great and on top of things. We just love her and think she's awesome. Brynlyn received her first set of immunization shots (4 shots, yikes!) Interesting note, DiGeorge babies cannon receive live immunizations shots because it could cause complications to their immune system. So Brynlyn will only receive immunizations that are killed. Usually the live immunizations are given about 1 year old. She also received her first Synagis shot. Synagis is a medication that will help Brynlyn to fight off RSV, which could be potentially devastating to her. She will receive this shot once a month from October through March, which is RSV season.

Friday (10-6) Pat, Farrell, Candace, Kim and Jakob (Mike's family) arrived from SLC for Brynlyn's blessing. We were excited that they were coming and spending this weekend with us.

Saturday (10-7) Mom came to watch Brynlyn for a few hours so we could take the girls to see the new movie "Open Season" and then to lunch at Fuddruckers. The Jensen clan came with us and we met up with Ron and Judy Everett (Mike's aunt and uncle) for lunch. It was a fun day and it was nice to get out of the house for something OTHER than a DR visit. ha ha

Sunday (10-8) Brynlyn's Blessing Day!

Monday (10-9) Our first visit with Dr. Darrell Wong, the immunologist. He ordered some specialized blood tests for Brynlyn to check levels of her blood count and immune system. I'll take her this week to Sonora Labs to have her blood drawn. Then he'll be able to give us a better diagnosis about what her immune system is like.

Tuesday (10-10) Mom, Mike and I went to see Dr. Lacey (the pediatric surgeon). Today was day they replaced the foley tube with the Nutriport g-tube "button." Then we received g-tube training. It's going to be alot better than the foley tube, however, I'm nervous about it and am sure I will be until I work with it more. I'll post a separate blog and show some pictures of what it looks like on her.

Whew...that is a typical week in the life of Brynlyn.

Blessing Day

2006-10-09T22:17:00.000-07:00

Blessing Day! This was a huge milestone for our family. On Sunday, October 8th, some of our sweet family and friends gathered at our ward and Mike blessed Brynlyn with a name and a blessing. Then Mike and I both had the opportunity to share some of our feelings with our ward, family and friends. It was such a wonderful day. I couldn't believe it was actually happening and I pretty much held my breath the entire time until the day was over. =) Brynlyn did great. She was a trooper and had an awesome day health wise. This day was certainly a product of many, many prayers said for her and for our family. And Brynlyn looked smashing in her blessing dress, of the "Cinderella Coture" line from Dillard's. You have to make a fashion statement, you know...

Never, never, never give up!

2006-10-09T21:37:00.000-07:00

I need to tell you what the story is behind our family motto: Never, never, never give up! One week before Brynlyn was born, we were having Family Home Evening. That night we were discussing how our family needed a family motto and the assignment was that each person was going to be thinking about it that week and we would discuss it at the next FHE to put our ideas together.

Thursday morning, June 29th, Brynlyn was born and we jumped on this gigantic roller coaster that we are currently riding on. Well, two days later we found ourselves sitting in the waiting room at the NICU at St. Joseph's Medical Center waiting to talk to DR's about Brynlyn's condition. Down at the NICU, there aren't any private rooms. The babies are all in one huge room with dividers that they call "pods." It was very dark and intimidating and scary. All I knew is that my baby looked really sick and it was hard to even be by her bedside because they were discouraging us from even touching her because she had severe hypertension. Any slight touch set her heart rate sky high and she would de-sat. There were three other cribs in her pod so there was no place to even sit down. It was awful, to say the least.

So outside by the NICU waiting room, they have a couple "family rooms" where they have families wait, sleep, stay overnight, eat, or just relax. It's like being in a small hotel room because it has a bathroom, a bed, TV, mini-refrigerator, table and chairs and rocking chair. We favored the "koala room." The joke was how terrible the decor was, but by the end of our NICU stay, we were actually beginning to like it. ha ha

On Sunday, July 2nd, we were at the hospital and we were waiting to talk to DR's to get more information. Whenever they did rounds around the NICU, they would get the parents in there to give them information. We had just come out of a "rounds" session and things were very touch and go. Brynlyn was a mystery as to how many things were going on with her. They did not have full answers for us yet and we were feeling very upset and discouraged. I walked out of the NICU and towards the Koala family room. This was the first time I saw that room. I walked in and immediately looked up and this sign was hung on the wall and it said: "Never, never, never give up!" I actually read it and then burst into tears because it was so hard and so discouraging at that point. It was easy to see why people do give up.

I turned to Mike and said, "I think we just found our family motto."
With much thanks to the Birmingham family, this motto hangs on a plaque over Brynlyn's crib at home.

I love my sisters...well, on second thought...

2006-10-06T16:57:00.000-07:00

I think these pictures are great, and unfortunately, very accurate. Brynlyn can survive any surgery we throw her way if she can just survive her loving and doting sisters. She really has 4 mothers here at home. For the most part she's diggin' the girls, but there are those moments when she wishes the house were more quieter so she could sleep in peace.

Okay, here is another "Brynlyn teaching moment". Check out the picture where Bryn is crying. Her left side is dramatically drooped down. This is called Asymmetrical crying facies. (DEFN: "We report two unrelated patients with Asymmetric Crying Facies (ACF) and 22q11 deletion. An infant whose face appears asymmetrical at rest and whose mouth is pulled downward to one side when crying is said to have an 'asymmetric crying facies' (ACF). The present report describes a case with cardiofacial syndrome and ACF associated other congenital anomalies, and provides criteria for differentiating absence of the depressor anguli oris muscle (DAOM) from palsy of the seventh cranial nerve and its central connections. The association of ACF with congenital cardiac anomalies is known as cardiofacial syndrome (Cayler's syndrome)." This information came from: http://www.ihop-net.org/UniPub/iHOP/gismo/112905.html

Basically, it's a "DiGeorge and cardiac baby thing." Anyway, I just thought I'd share that with you. Brynlyn truly fascinates me and is constantly teaching us new things.

Life with the G-Tube

2006-09-30T22:18:00.000-07:00

Well I couldn't blog without showing you life with the g-tube. The picture on top shows the incision site where they inserted the foley g-tube. They have kept this on for 6-8 weeks post op to give the track to her stomach time to heal. When we went back in for follow up last week, the tube was hanging on by a few stitches, so the nurse put this hollister bandage over the tube securing it in place until we can have the foley tube replaced with the button I talked about earlier in the blog. They will do the button on Oct. 10th. They are confident that the stomach track will be fully healed by then. There will be no love lost between me and the foley tube. It's no fun to work with at all because it's leaky, gets clogged at times, and it catches on everything and then tugs on Bryn's stomach. And honestly, it's a little strange seeing a tube coming out of your child's stomach. I'm sure this balloon button thing isn't going to be much better to look at, but it's very low-profile and only protudes about the skin about 1 inch. I'll be sure to post a picture of the "button" after it's inserted into her.

Notice Brynlyn's fists. In almost all pictures, she has her fist tightly shut. The nurses in the PICU told us that this is actually a "heart baby" thing. Most heart babies tightly clench their fists but what's different than other babies, is that their thumb is tucked inside their fist. It's just very interesting to notice.

Brynlyn and Piglet

2006-09-27T13:30:00.000-07:00

I love this picture. Brynlyn loves her pacifier and of course it's the huge hospital one that she's fond of. It's still hard for her to keep it in her mouth and so Piglet became my little helper in keeping her pacifier in. This is actually what the nurses in PICU would do to keep her paci in. It works great!

Yesterday (Tuesday 9-26) we had a DR visit with Dr. Lacey (the pediatric surgeon). It was a follow up visit from her fundo surgery. It will be five weeks (on Friday) since her surgery. My how time flies...He thought her incision site looked good. However, the last few of her stitches were still in place on her skin barely holding the tube into her. So he put a stoma bandage of some sorts on it along with a clamp to secure the tube. Brynlyn really didn't enjoy getting the remaining stitches cut out, but it was nice to get it held more securely into place. The track that leads into her stomach needs a few more weeks to heal. This is a good temporary fix until then.

Our next discussion was that Brynlyn will go back into the office in two weeks to replace her "foley tube" feeding tube for her "button" g-tube. I took part in Button Training 101 by the nurse in the office. This g-tube button experience is going to be quite interesting. Check out www.mic-key.com for more information on these feeding g-tubes. We actually have two choices of g-tubes: the Mic-key and the Nutriport g-tube. I plan on doing research on both these next few weeks so we can make the best decision on which one to use for Brynlyn. There are pros and cons to both. Right now we're leaning towards the Nutriport g-tube.

Then, we also went to Dr. Stewart's office for follow up (pulmonologist). She and Brynlyn had some good bonding time. It was cute because Brynlyn was a little fussy because she had missed her naps and she was bone tired from seeing these DR's. So I was trying to calm her while waiting to see Dr. Stewart. The minute the DR walked in and held Brynlyn (which she calls "Brynlyn time", she stopped fussing and was giving the biggest smiles. More proof how much she loves Dr. S. Dr. S thought Brynlyn looked great and sounded very clear. We're still running a course of antibiotics just to make sure the pneumonia is completely cleared up, but she's thinking it's doing much better.

Brynlyn has developed thrush in her mouth (most likely due to all of the antibiotics that she's on.) Unfortunately, antibiotics destory good and bad bacteria. And she also has a horrible diaper rash right now, which Dr. S says is linked together. So she has added one more medication to try and clear her up.

Tomorrow (Thursday 9-28) we have our first assessment with CRS (Child Rehabilitative Services.) It's a state funded program that children with special needs qualify to be a part of. So tomorrow is our enrollment visit/nurse assessment. I'll let you know how that goes.

Thank you for your interest and prayers for our family and our sweet Brynlyn. She's thriving because of all of the love and prayers said for her.

Lookin' good...

2006-09-22T23:28:00.000-07:00

So far, so good

2006-09-22T11:47:00.000-07:00

Well, we have made it 13 days being at home. Brynlyn has already broken her own record. She is doing well. This week we were at the pulmonologist's office. This appt is normally a 2 hour appt because Dr. Stewart loves having her "Brynlyn time." What is so sweet is watching how much Brynlyn adores Dr. Stewart AKA Dr. Tink (because she's just like Tinker Bell.) Anyway, she thinks Bryn is doing great and thriving being at home. Her pneumonia is beginning to clear up with help from antibiotics and breathing treatments.

We added another DR to Brynlyn's regimen. "Dr. Mary" Serrantonio is her pediatric endocrinologist. She is so wonderful and we love her already. Come to find out, that Dr. Mary also treats our cousin Tami and Mark Millett's daughter, Heidi. Heidi is such a trooper and is holding her own against diabetes. Here's a shout out to the awesome Millett family. I love that we share Dr. Mary! It's a family thing now.

We spent 2 hours in her office this week while she was getting to know Brynlyn. She is treating Bryn for hypoparathyroidism. DEFN: Hypoparathyroidism is the state of decreased secretion or activity of parathyroid hormone (PTH). This leads to decreased blood levels of calcium (hypocalcemia) and increased levels of blood phosphorus (hyperphosphatemia). Symptoms can range from quite mild (tingling in the hands, fingers, and around the mouth) to more severe forms of muscle cramps leading all the way to tetany (severe muscle cramping of the entire body), and convulsions (this is very rare!). For her treatment, she is on calcium supplements and vitamin D supplements, for life.

Also, we increased her feeds because she's just not gaining weight. She's holding her own right now and not losing weight. But we've got to get some meat on her bones before surgery. So she is now eating via g-tube 100 cc's of Pregestimil formula every three hours. (60 cc's = 2 oz) The reason she is on Pregestimil is because it is already digested food. Her body doesn't need to do any work digesting the food, only absorbing the nutrients. She needs to preserve her energy for growing. And they say Brynlyn has very little reserves, so she gets tired and worn out easily. So the more work we can do for her, the better. I suggested to her DR that we could melt a couple of Snickers bars each day and feed them through her tube. Atleast, that's what helped me put on some pounds, I'm sure it would help her gain weight too! ha ha

She is still on her medications, that now total 14. The chart I created to manage the doses is lifesaving and would be so confusing without it.

She is getting so good at holding her head up. It's amazing how I took little developmental stages for granted with my previous children. Now I realize how big this milestone is for her and how hard this is for her to do. She's such a trooper.

And she's sucking on her fist and loving her pacifier. These are such huge steps to help her oral aversion. She is very alert and active and is a typical baby in that she loves being held and fusses when she's put down. Can anyone else relate?

Well that's the latest. I will be sure to be a better blogger and keep the updates coming. Thanks for your interest and concern for us and our sweet baby. We appreciate all of the love and support. Take care and have a safe weekend!

Welcome Home!

2006-09-12T18:29:00.000-07:00

We never thought this day would come, but we are home...again. Mike and I were at church on Sunday sitting in sacrament meeting. (The girls had spent the night at Mike and Connie's house the night before and so they went to church with them.) Mike got a call from the hospital, which is usually never a good thing. The theory is: "No news is good news." However, this call was good news. We talked with Dr. Stewart (pulmonologist) and she asked us what we thought about taking Brynlyn home that day. We were so excited and had been ready for this since we had taken her in 30 days previously. And this was Brynlyn's number 70th day of total hospital days. Yikes...I think we have worn out our welcome with St. Joe's. ha ha

So Brynlyn is home and doing well. She still has pneumonia, so we give breathing treatments Q2 (every 2 hours even through the night at Q3). And her feeds are Q3 and then continuous feeding through the night through her g-tube, of course. She is also on 12 medications that all have to be given at all odd times of the day and different doses each day. There is even an antibiotic that is only given on M- T- W. I had to create a chart just to keep track of all of her meds.

We have already been back for follow up visits with the CV surgeon group and pulmonologist. In the upcoming weeks, we will continue to have follow up visits with our pulmonologist, CV surgeons, cardiologist, gastroenterologist, fundo pediatric surgeon, and pediatrician. So far, the DR's are pleased with her progress at home. And despite how crazy everything is right now, I know this is a better option than spending more days at the hospital. Brynlyn is doing great and everything is so far, so good.

Thanks for your interest and love and prayers for our family. We feel them daily and really appreciate all of the love and support from our dear family and friends. We'll post again with updates on Brynlyn so keep checking back.

They call me sugar daddy: 8-8-06

2006-09-08T23:18:00.000-07:00

So I just have to give a shout out to my sweet husband and let him know how much I love and appreciate him. He is such a great dad to these girls and loves them all so much and they all have him wrapped around their tiny, manicured little pinkies! The entire time Bryn was in the hospital (during her first 38 day stay), he would tell me that he would give anything to have his little baby girl sleeping on his chest. This is one of his favorite parts about being a Dad to a newborn. So one night I came into the room and there he had Brynlyn, tucked in, and she lay on his chest just as comfy as can be, like she was born to lay there and chill with her Daddy. You know I couldn't resist grabbing my camera. He's gonna be upset that I posted this photo but I LOVE it because it shows such a tender relationship between them. Mike, this is why Heavenly Father has given you four daughters: you have such a big heart and so much capacity to love four such unique and different girls. I love you and am grateful for this opportunity to experience this trial and error experiment called Parenting!

Brynlyn's Birth Day: 6-29-06

2006-09-07T23:30:00.000-07:00

Brynlyn Anna Jensen was born on June 29th, 2006 in Mesa, Arizona. She weighed 6 lbs. 13 oz. and was 20 1/2 inches long. She was born at Banner Mesa Hospital in Mesa and was immediately put on oxygen. 24 hours later, she was in distress and they air-evaced her to Banner Desert Hospital in Mesa so she could be ventilated. While at Desert, her heart went into great distress and they discovered she had a severe congenital heart defect (CHD). She was then air-evaced over to St. Joseph's Medical Center in Phoenix, Arizona. She spent the first 3 days in NICU and then was transferred to PICU to begin preparation for heart surgery.

Her diagnosis in relation to her heart is: Tetralogy of Fallot, Truncus Arteriosus, Pulmonary Atresia, Ventricular Septal Defect (VSD), Right Aortic Arch and Discontinuous Pulmonary Arteries.

In addition to her heart defects, she has been diagnosed with DiGeorge Syndrome, 22Q11.2 deletion. All of her complications can be categorized under the genetic syndrome. In addition to her heart problems, she was born with abnormalities with her trachea. And she also has laryngotracheomalacia which is causing issues with breathing as well as feeding issues. As one of the neonatologists said to us at NICU, "Your baby is very, very sick." Now we understand more fully of what she was telling us.

Brynlyn continues to beat the odds. More times than not she should not have made it through the night, but she continues to fight hard to be here with us. We are grateful for her and we are enjoying each precious day we have with our special baby girl.

Brynlyn's Grandparents

2006-09-07T23:11:00.000-07:00

Brynlyn is really blessed to have such wonderful grandparents and great-grandparents. They have been so loving and supportive during this difficult time for our family. We are lucky to have them in our lives and grateful for all of the hlep and support they have given us. We love you guys!
(Top) Grandparents Farrell and Patricia Ann Jensen
(Middle) Grandparents Russ and Cathy Ann Thornock
(Bottom) Great-Grandparents Horace and Anna Andersen
Brynlyn's middle name is Anna. She is named after these three wonderful women.

Grandparents not shown: Mel and Carmen Curtis; Grandma Dear Thornock; (Grandpa and Grandma Jensen and Grandpa Thornock: passed on)

Sisterly Love: 8-27-06

2006-09-07T21:43:00.000-07:00

Sisterly Love: there is nothing in the world quite like a sister. Brynlyn is blessed to have 3 wonderful and loving sisters. Ashlyn (on the right) is the oldest sister. She turns 9 on October 27th. She is an A-student in 3rd grade, is learning to play the piano, enjoys playing the computer and her Gameboy and is a fantastic organizer. Katelyn (on the left) is the second sister. She turned 6 on August 9th and flies by the seat of her pants. She is impulsive, energetic and lives life to the fullest. She just started kindergarten, is an avid thumb sucker (hmmm...) and she has a blanket named "Blue" that she just cannnot live without. Lauryn (middle) is the third sister. She started preschool this year and is learning Zoo Phonics. She is a tenderheart and very sensitive. She is very close to Brynlyn and thinks she is her 2nd mother.

Mike and I feel so blessed to be the parents of these four beautiful, special daughters of God. They enrich our hearts with lots of love and laughter and they give tremendous meaning to our lives. Even though we greatly outnumber Mike in gender and there are a whole lot of hormones running around our home, I know he wouldn't have it any other way.

Pretty in Pink: 8-7-06

2006-09-07T20:40:00.000-07:00

These are a few of the pictures we took of Brynlyn when she was home during those 6 days. She was very happy to be home and really loved it when her sisters would hold her and talk to her. We are looking forward to getting her back home with us again.

Fundo Surgery: 8-25-06

2006-09-07T17:22:00.000-07:00

'Twas the night before surgery and all through the hospital...

Brynlyn had fundoplication surgery on 8-25-06. This procedure was done to help control her severe acid reflux. In Nissen fundoplication, the fundus (upper part) of the stomach is wrapped around (-plication) the inferior part of the esophagus, preventing the reflux of gastric acid (in GERD). Dr. Rudolph Nissen first performed the procedure in 1951, and the procedure therefore bears his name. In addition to the fundo surgery, she also had a gastrostomy (AKA g-tube) placed in her stomach. This tube provides an alternate way to offer food and / or medicines. It also can be used to vent her stomach for air or drainage. This tube will allow her to consume all of her feedings so she can get her adequate amount of nutrition so she can continue to grow.

As of date, she has recovered from the fundo surgery, but picked up a few bugs in the hospital during her 29 day stay there, so far. She has fought a few staff infections (one on her heart surgery incision, one in her eye, and another in her large intestine.) Currently, she is battling a few strains of pneumonia that she picked up at the hospital. They are being aggressive in her treatments of this infection. She is receiving breathing treatments every 2 hours along with antibiotics. We are hoping and praying that she will be able to continue to fight these infections. She is such a sweet baby and is very alert and willing to give you smile. We sure love her and are grateful that she's a part of our lives.

Family Photo: 7-30-06

2006-09-07T16:42:00.000-07:00