Thursday, May 31, 2007

Thursday: One step forward, two steps back



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







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. =)

Monday, May 21, 2007

My top tooth

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

Sunday, May 20, 2007

G-tube Drama

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

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

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

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

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

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

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

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



Wednesday, May 16, 2007

Cardiac Cath




Brynlyn's cardiac cath was Tuesday morning, 5-15-07 at St. Joseph's Hospital. Our check in was at 11:00 a.m.and the procedure was scheduled for 1:00 p.m. It's a very basic procedure and they were only looking for diagnostics, meaurements of blood flow, B/Tshunt performance, etc. We were able to walk her into the room and put her down on the table and hold her hand until the gas knocked her out, which took about 1 minute. Talk about your heart into your stomach when you leave your sleeping baby in that room. Now I completely understand why they don't allow parents into the OR.
So during the procedure (about 2-3 hours) we grabbed some lunch and thentracked down Becky Buendia who was also a patient at St. Joseph's. She wasin a horrible boating/tubing accident about 11 days ago. (Her story: She and her 2 friends flew off the tube and the one friend's head jammed into her stomach. 12 hours later she was in emergency surgery having 6 inchesof her intestines removed. She is doing much better these last 2 days and they are now waiting for her digestive tract to kick into gear and then she can go home. Becky, you're awesome--hang in there!)
So we got to spend this time with Sara and Becky, which was such a blessing because they are such a fun, wonderful family and it was good to see Becky doing well. After about 2 hours, they paged us and we went to the cardiac cath waiting room. Brynlyn was in recovery and coming out of anesthesia. We had a chance to sit down with the peds cardiologist, Dr. Graziano, and he gave us the report. The cath went very well. They usually go in through the groin vein to insert the wires to the heart. However, due to Brynlyn's many,many problems in the past and her previous 2 surgeries, there was way too much scar tissue to get the wires in. So they patched her up and came out of there (leaving a huge bruise there.) So they had to go through a vein in her neck to insert the wires to her heart. Her heart looks great and she has great flow through her pulmonary arteries to her lungs (which was what they fixed in her last surgery.) The B/T shunt is getting smaller and tighter and so she definitely has outgrown it and it needs to be removed and replaced with a conduit artery. So they have tentatively scheduled her for surgery on May 29th. This will be a full tetraology of fallot repair. Her case will be discussed at Cardiac Consult on May 22nd with all of the DR's and then we meet with the surgeons on May 25th and then go to the hospital for pre-op blood testing in prep for surgery. We do get to go home to enjoy the Memorial weekend. They anticipate she'll be in recovery 1-2 weeks postsurgery for recovery.
The main complication we had following the procedure is that the vein in her neck would not stop bleeding. The nurses paged the DR and he came in 3 different times to check it out. It was just a small, steady flow, but she was losing too much blood for a baby her size and so her oxygen sats would drop because she was getting weak and irritated from the constant changing of the gauze pads. She would completely soak a gauze pad with blood in about 45 minutes. So they admitted her into the PICU for observation overnight. Once she calmed down enough to sleep, then her sats started going up and the bleeding did finally stop. And she did not need a blood transfusion. They did need to insert an IV to draw blood in the middle of the night. Why they do these things at 4 a.m. is beyond me. But Brynlyn slept OK during the night and woke up looking and feeling better.
The surgeons came and did rounds this morning and they looked at a few of the pictures from the cath and thought her heart looked great and that she was a good candidate for surgery. She's healthy and strong so this really is a good time to go in. Besides, she's pretty blue and so Mike can then stop calling her his "Smurf baby." ha ha And we had many nurses coming in just to say "hi" to us. It was a mini-reunion. So atleast we know we'll be well taken care of when we go in for surgery in 2 weeks.

I love Grandma Sugar!



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

Baja Mexico Cruise




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

Monday, May 07, 2007

I love my Daddy


The Cherokee Indian Rite of Passage

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

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

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

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

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

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

Sunday, May 06, 2007

Family Picture





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


Friday, May 04, 2007

Playing Peek-A-Boo with Lauryn





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

i carry your heart with me


i carry your heart with me

i carry your heart with me (i carry it in my heart)

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

Poetry by: ee cummings

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

Tuesday, May 01, 2007

Playing with my sisters



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