Prognosis POSITIVE: 12/29/09 Update

The results finally came in on Tag's biopsy today.  We had a previously scheduled follow up appointment at Primary Childrens with Dr.'s Sadiki (cosmetic surgeon) and Downy (pediatric surgeon).  Talk about a long drive north... It was snowing and slippery and the hour drive took an extra 20 minutes.  Last night, I got up to hit the bathroom at about 3 AM and couldn't get back to sleep because I allowed a fear thought to get into my head.  I hate that.  There's just as much to be positive about and grateful for, but sometimes the mind chooses to hold on to fear.  Arrrrgh.

Anyway, we waited for an hour for Sadiki to finally see us and this gave Jo and I more time to wonder what was going to happen next for our little man.  Luckily, I had my computer so I was able to pretend to get some work done (see picture, below).

Sadiki came in and the first words out of his mouth were, "Wow!  The mass has gotten smaller.  That's great."  Then we told him the results were back from the specialist at Vanderbilt and he said, "Oh really?  I haven't seen them."

"You've got to be kidding me..."  I thought to myself.

He left the room and came back seconds later with a single sheet of paper that held some of the most important information of my life.  He paused for a few minutes as he read the document and said, "Just what we thought, Dr. Coffin confirms that the features of the lesion are consistent with INFANTILE FIBROMYOMA."

Prognosis Positive!

He called Dr. Downy down to his clinic and they explained that an infantile fibromyoma is a tumor (or neoplasm) that is simply a piece of tissue that grows on it's own irrespective of what's considered 'normal'.  I hate the word tumor.  Maybe because it's used so much in movies and television for something life-threatening.  They said it's not a word to be concerned about, unless immediately preceded by the word "malignant".  In Tag's case this tumor is almost certainly BENIGN.

They are still running one more test to make certain this tumor is not a sarcoma (or malignant).  Apparently, sarcomas create a specific gene that is not found in fibromyomas and this test will give this diagnosis the final stamp of approval.  So, we're not celebrating fully quite yet.

Dr. Downy takes out Tag's biopsy stitches (picture below) 

So what's next?

Dr. Sadiki said that the worst thing we'll have to deal with is funny looks by strangers who see Tag for the next 3-6 months.  Hello!  Tag's Uncle Nate and Aunt Kim made him a killer Denver Broncos hat for just such an occasion! 

Fybromyomas typically involute (or shrink) over time on their own, so they recommend we allow Tag to grow bigger and stronger over the next 3-6 months (like any normal little baby) while allowing the fibromyoma to shrink.  Then, at some point, we assess the left over tissue or skin and Dr. Sidiki will work his magic to remove what's left.

What a relief.  The biggest change for me was that this evening Tag was fussing and crying and for the first time I didn't wonder if it was some strange cancer that was killing him.  It was probably just gas!

I know that many friends and family have been following Tag's adventure, and if you are so inclined I would love it if you comment on this blog and give Tag your congratulatory vibes.  Our little family has felt your support and prayers and it would be fun to hear from you.  NOTE:  If you do make a comment, don't forget to include your name so we know who you are!

I think I'm due for a good night's sleep.  Joann and Tag are already sleeping peacefully.

NOTE TO TAG:  Little buddy, I loved your Halloween costume.  You really got me!  You are only 3 weeks old and already your face is filling out and you seem bigger.  Tonight your Grandpa Brinton held you and sang to you on his lap and you should have seen it.  It was awesome.  Sleep well son, because snow is falling and soon we'll be out sledding.

Grandpa Brinton sings to Tag (picture below) 
 

The Butterfly Circus

I was awake with baby Tag last night at 2:30 AM.  Well, in reality HE was awake while I was walking in my sleep... Anyway, I got thinking about a few close friends and family members who have raised (or are raising) children with unique differences, be it autism, downs syndrome, hypoglycemia, etc..  Others have parents or grandparents who are struggling with Alzheimer's or cancer or some other affliction.  None of these friends chose this arrangement.  In fact, these circumstances are anything but convenient or desired.  As I consider these families, I notice that they are refined and humbled in ways that "normal" life simply cannot afford.  These families are forced to look at life in a new way and words like HOPE, FAITH, and FAMILY become more intense and real.

My Dad's mother, Cumorah Brinton, lived to be 96 years old.  She lived a challenging life on a farm, raising 6 sons.  Then, finally, she had a little girl who they named Genevive.  I'm sure Grandma Cumorah was thrilled!  Then, one day while the boys were off at school, Grandma was out working on the farm and she saw smoke coming from the direction of their little house.  By they time she rushed back to the little home it was too late, and baby Genevive was consumed by the fire.  I just can't imagine how this tragedy affected the rest of my Grandmother's life.  All I do know and remember of her is that she was the most humble, saintly woman I have ever known.

In my faith, we believe that families can be sealed together beyond the grave to be reunited in the eternities.  This is one of the unique functions of our temples.  Perhaps it was this hope that she could be with her little Genevive again that carried Grandma all those years.  Grandma was always so happy and positive.  In fact, in her 90's when someone would ask her for advice, she was famous for responding, "Well, the first 100 years are the hardest."

Maybe Joann and I will get lucky and baby Tag's tumor will be of the benign sort, and it will simply involute over time and the cosmetic experts will fix his little ear so that its positioned properly so he looks like a normal little baby.  Or maybe we are lucky to have him just as he is. 

What if Tag was designed this way for a purpose?  Most times when a friend has a new baby they send out a baby announcement telling you of their weight and length.  I always thought this a strange custom but I guess at arrival you don't know much more than that... But still, isn't it interesting how we start comparing our kids with others right from the start?  Anyway, normally we view these announcements and think something like, "Oh, they had their baby.  Isn't that nice..."  Then we go on with our lives never to think about these kids again, only to see photos on an occasional Christmas card.

Tag's arrival has been quite different.  Already he has caused wonder among so many and we are shocked to learn how many are following this blog.  It's as if he already has so many friends pulling for him who are interested to know how he is doing.  When friends meet him in person for the first time they are so excited as if they are seeing an old friend.

Joann and I have been so humbled by all the support and love from so many.  This Christmas had a whole different level of gratitude and Christmas spirit and I found myself thinking about my cute Grandmother often.  Yesterday, one of Tag's little cousins, Nikolas Kriser, asked me what I got for Christmas and without hesitation I exclaimed, "I got Tag!" -- and I meant it.  What a great gift.

On Christmas Eve, we received an anonymous letter from someone who said they had a son who was born with fused fingers and they too had spent several anxious days at Primary Children's, hoping and praying for his well-being.  In this letter they expressed their love for Tag and us as well, and included a 100 dollar bill.  They told us the story that as they were struggling, someone had done the same for them and they hoped this letter would give us a little help.  This touched Joann and I so much that we cried when we read about their story and gladly accepted their thoughtful gift.  The only thing they asked in return was that someday down the road we pay it forward to someone else.  Tag and I will have a great adventure finding our recipient!  Thank you so much to our anonymous friend.

Another friend sent us a link to a short film called, The Butterfly Circus.  This is a great film about the impact a single person can have on another person's life, and how perspective is so important.  You can view this film here:  http://www.thedoorpost.com/hope/The%20Butterfly%20Circus/

Note to Tag:  Whatever happens little buddy, you are the best and the limit is the sky!  Don't forget it.

Merry Christmas!

Joann and I got to enjoy our most favorite gift a little early this year.  No Bah Humbug's coming from the Tag.  Merry Christmas everybody!

 

All I Want For Christmas...

How can this new father try and explain the change that has taken place since Tag was born?  Here's a few examples:

1) Yesterday I ran to a few malls looking for some Christmas gifts.  At each mall I found myself wandering over to check out Santa to see if he is worthy for Tag to visit.  In the old days I would have found myself wandering over to Victoria's Secret to check out the models.

2) The extended Brinton side of the family had a big "white elephant" party on Tuesday night and all I wanted to do was carry Tag around and introduce him to all those family members I love.  In the old days I would have been in front of the TV watching the bowl game.  Nice win by BYU over Oregon State, by the way.  In case you weren't aware, Oregon State is from one of those "dominant" BCS conferences who have no business degrading themselves to play against a Mountain West team.  Utah also thumped Cal last night.  The score didn't really reflect how much better Utah played.  Here's Dad and Tag cheering on the Runnin' Utes:

Chalk up a 9th consecutive bowl victory for the Utes, including wins over BCS conference "powerhouse" teams USC, Pittsburgh, Georgia Tech, Alabama and Cal.  I'm anxious to see if Texas can play as strong against Alabama this year as the Runnin' Utes did last year.  Oh how I wish TCU and Boise State were playing teams from BCS conferences.  I think the BCS is really just a bunch of BS.  I digress...

3) I watched Polar Express with Jo's nephews, Elijah and Nikki, the other night and found myself tearing up all over the place. When it comes to communicating the true spirit of Christmas and what St. Nicholas represents, that film has it all.  There's no question that Tag will be a believer.  Are you?

4) Some of my favorite moments are now at 3 AM when it's Tag and I hanging out watching Sportscenter while Joann sleeps in the other room.  This is when he is wide awake and seems to look into my eyes like he's got something cool to tell me.  Maybe he's got an adventure in his mind to take me on, or a funny story that happened to him the day before.  Maybe he wishes he could tell me about hanging out with his Great-Grandmas Cumorah or Gwen before coming down to be with us.  I can tell he's got something on his mind and I'm dying to know what it is. 

Everyone who meets Tag in person is shocked at how tiny he is.  I guess the photos on the blog make both him and his "bump" look bigger than they actually are.  So to alleviate the confusion, you can now view Tag in person on Youtube:  Tag's Hiccup Blues


We still await the biopsy results and while it's been just over a week since they told us we would hear "in about a week", it feels like it's been a year.  Come on, people!  Give Tag and his family some answers!  Joann and I have our moments when we are nervous or worried, but overall I have decided to follow Tag's lead.  If he's happy, I'm happy.


Here's Grandma Julie meeting Tag for the first time last night:

Here's my sister Darcie's daughter, Adele, hanging out with Tag.  She and her sisters fought like cats over who gets to hold him and for how long:

Here's Tag's other cousin, Tennie, loving every minute of her Tag time:

Tag's First Weekend Home

12/21/09 -- Tag update:  Still no word from the pathologists who are studying Tag's biopsies.  We remain as anxious as everyone to learn what he's got going on above his right ear.  In the meantime, Tag doesn't seem bothered at all, so I for one am joining him in not being worried or stressed.  We'll keep everyone posted as soon as we know anything.

Tag's brothers, Jordan and Michael came down for the weekend to hang out.  Jordan brought his beautiful girlfriend, Hannah, and true to form, Tag did not disappoint.  For those of you who know Jordan and Michael you'll enjoy the pics below.  Jordan's a senior in High School in Jerome, Idaho.  He had a great senior season on his football team as a linebacker.  He is considering attending Dixie College in St. George, UT and trying to walk on to the football team down there.  This thrills both me and my own Dad, Howard Brinton, as we both attended Dixie and Howard earned All Conference honors in football while there.

Michael is in 8th grade and just won region in wrestling, but his real love is football.  We are all looking forward to watching him play under the lights in high school!  Here's Jordan enjoying some TAG time:

I caught Michael asleep rocking Tag.  This is a very common occurrence, as Tag is a very chill dude and he lulls you to sleep with his funny faces.  (NOTE:  Tag has bandages in this one because he made his first visit to his new Pediatrician and he wanted Tag's band aids to come off so that his stitches could breath, but Tag kept itching them, so we gave him this cool headband to help him help himself) :

Everyone who wants Texas to kick Alabama's butt just like the Runnin' Utes did last year, raise your hand!

Joann with her 3rd son:

We are so grateful for all your kind thoughts and prayers.  See, Tag has helped us all remember the true spirit of Christmas.  For this, we find ourselves extremely full of gratitude.

Hiccup Blues

Tag got the hiccups something fierce this morning while he and I were chilling in front of the TV watching Sportscenter.  This spurred a new song called, The Hiccup Blues:

I had me a lady
she held me tight
and then I got the hiccups and
she ran off in the night

[Chorus]
I got the hiccup blues
Da dooba dooba doo
I got the hiccup blues
And you can get 'em too.

Its hard to even cuddle
or make a silly face
these hiccups drive me crazy
bouncing me all over the place

[Chorus]

It interrupts my yawning
My feedings too
It dislodges my binky
I'm feeling so blue
I got the hiccup blues

-------------------

Also, Tag got a special message from Santa this morning:  

http://portablenorthpole.tv/watch/527f6fb6a961a5cbaf28180f12d3af62

Home On The Couch, Finally - 12/16/09

We finally had our first night at home.  Tag was up much of the night with what Joann thought was an upset stomach.  She thought it may have been because her milk was tainted with two chocolate cookies she had eaten after dinner last night.  Tag not liking chocolate milk?  That simply cannot be the answer.

This morning, though, Tag was happy and bright-eyed.  At about 8:30AM I had the great pleasure of laying on the couch with my knees up and putting him on my legs where he could look at me and his surroundings.  We just hung out together for about 45 minutes.  We talked about Christmas and I reminded him that Brintons have always been believers in Santa Claus and so he'd better get on board.

I had to go to Salt Lake for some business, but when I returned I arranged a video Skype call with Tag's cousins in Northern California (my sister Darcie's girls, Tennie, Adele & Ceci).  They laughed and asked great questions about his mass.  Ceci (5 years old) exclaimed, "Mom, I saw him touch it!"  He also was introduced to his Grandma (Julie Brinton), who lives in St. George, UT via a Skype video call.  He was in rare form.

The women in our local church have been bringing us wonderful meals since getting home which is a welcome relief to Joann and Marina after a long week at the hospital.  Thanks ladies!

This morning I was reading one of my favorite writers, John Eldridge, and he was talking about the situation we find ourselves in as human beings, and I thought it worth sharing, especially after the events of little Tag's birth... 

----------------------

Once more, lend a mythic eye to your situation. Let your heart ponder this: 

You awake to find yourself in the middle of a great and terrible war. It is, in fact, our most desperate hour. Your King and dearest Friend calls you forth. Awake, come fully alive, your good heart set free and blazing for him and for those yet to be rescued. You have a glory that is needed. You are given a quest, a mission that will take you deep into the heart of the kingdom of darkness, to break down gates of bronze and cut through bars of iron so that your people might be set free from their bleak prisons. He asks that you heal them. Of course, you will face many dangers; you will be hunted.

Would you try and do this alone?

Something stronger than Fate has chosen you. Evil will hunt you. And so a Fellowship must protect you.

Honestly, though he is a very brave and true Hobbit, Frodo hasn’t a chance without Sam, Merry, Pippin, Gandalf, Aragorn, Legolas, and Gimli. He will need his friends. And you will need yours. You must cling to those you have, you must search wide and far for those you do not yet have. You must not go alone. From the beginning, right there in Eden, the Enemy’s strategy has relied upon a simple aim: Divide, and conquer. Get them isolated, and take them out.

You see this sort of thing at the center of every great story. Dorothy takes her journey with the Scarecrow, the Tinman, the Lion, and of course, Toto. Maximus rallies his little band and triumphs over the greatest empire on earth. When Captain John Miller is sent deep behind enemy lines to save Private Ryan, he goes in with a squad of men. And, of course, Jesus had the Twelve. This is written so deeply on our hearts: You must not go alone. The Scriptures are full of such warnings, but until we see our desperate situation, we hear it as an optional religious assembly for an hour on Sunday mornings.

Imagine you are surrounded by a small company of friends who know you well (characters, to be sure, but they love you, and you have come to love them). They understand that we are all at war, know that the purposes of God are to bring a man or woman fully alive, and are living by sheer necessity and joy in the Four Streams. They fight for you, and you for them. Imagine you could have a little fellowship of the heart. Would you want it, if it were available?

That is our destiny. 

----------------------

As Tag has led Joann and I into this adventure, we have certainly felt this "fellowship of friends" and we simply could not do this alone.  Thank you friends for your support.  I pray my son will learn this important principle as he moves through life.

 

New Tenant Arrives Home: 12/15/09 - 4:30 PM

Almost 10 days ago to the minute, Baby Tag was whisked away from his home and carried by his Mother to a van where he was rushed to Primary Children's Hospital.  Neither he nor his parents knew the adventures that were about to take place.  In fact, within one short week of this life, he'd already knocked out a few items on his bucket list, including:

1) Scare Dad with an excellent Halloween costume.
2) Take a slippery ride in a van within first hour on earth.
3) Get an A+ on first two tests:  CT Scan and MRI.
4) Stay calm during biopsy's, earning respect of his peers and hospital staff.
5) Inspire visits and warm wishes from many friends and family members.
6) Break wind so loud while in Dad's arms, that it causes him to proudly exclaim to nearby staff, "Did anyone just hear that?!"

Now he's been delivered back home where he and his new family can rest in their own beds (aaaaaah) and await the diagnosis from Cheryl Coffin, the specialist at Vanderbilt University.  According to our friends at Primary's, this could take a week.

Grandpa Brinton was at the hospital to say goodbye and help carry Tag's things to the car:

We are OUTA HERE!

Evidence that Tag and Joann are happily back at home, about to take naps:

 

Release Papers, Part Deux: 12/15 Update

As per usual, Tag's vitals are strong with no complications or worries following biopsy #2.  He's feeding well and sleeping even better.  Funny how life is all about perspective.  While I'm sure our situation has seemed so difficult and stressful from the outside, I find myself feeling gratitude from the inside.  The other day, I was in the elevator and an older gentleman stepped in to ride with me.  He looked like a nice grandfather, but his eyes looked a little puffy.  I asked him how he was doing and he said, "Not so good.  We just learned that my cute granddaughter of 3 years old has cancer and will only be with us for maybe another 3 months."  Then the elevator opened and he was gone.

Then, at a nice lunch the NICU put on for all the parents stuck in here with their kids, they asked us to each introduce ourselves and tell a little bit about why we are here.  I have to say that among all the parents I felt like the lucky one as I listened to their stories.  One young Dad broke down as he talked about his daughter.  This young father struck me the hardest because he was such a strong, tough-looking guy and this situation he found himself in had softened him beyond his ability to control himself.  I walked up to him after the lunch and gave him a hug and we laughed at how these little ones can soften us so much.

I really can't believe how much I love this little Tag man.  My friends told me that it was amazing and that I wouldn't understand until I was a father.  They were right.  The way he has handled himself with all the poking, prodding, tape-tearing, etc. is nothing short of awesome.  He is much tougher than I am, and seems to handle it all with complete calm.  Right now I'm sitting alone in the waiting room while Jo is in with Tag waiting for him to wake up so she can feed him.

I just returned from walking out to our car with Ruth from "The Baby Seat Squad"  to teach me how to work Tag's car seat and to make sure our seat meets the requirements.  I told her how ridiculous I thought the whole car seat regulation police had become.  Example:  They make the baby face the back seat until he's one year old.  I'm all for keeping the baby safe, but give me a break. I'm sure all you parents out there can relate to this frustration.

Word is I get to take Tag and Mother home this afternoon, but I won't celebrate that until we are off the property heading south.  10 days that felt like forever.  It'll be nice to be home to watch some football.  Here's the only TV we've been able to watch:

Biopsy Complete - 12/14, 3 PM

Little Tag just came out of surgery.  He was breathing fine and was surrounded by 6 caregivers.  We are awaiting the anesthesia to wear off so he can eat.  They made two incisions, one in the same place of the first biopsy and another toward the rear of the mass.  The surgeon said, "If this Pathologist can't see what's up with these samples, then no one can."  ...meaning that he got some good samples.  Now they send the samples off to Vanderbilt and we continue the waiting game.  Not sure if we can take him home tomorrow or not.  Stay tuned.

PS.  Everyone in his little room was laughing as he kept making some funny faces.  Tag seems to make an impression wherever he goes.

Here's a picture of him I just took while the staff are monitoring him until he awakes:

2nd Biopsy Requested - 12/14 update

"HOLD THE PHONE!"  Said the resident on the floor this morning.  Dr. Coffin (I know, what a name for a pathologist!) was able to view little Tag's biopsy this morning from Vanderbilt and she requested another sample be taken from the rear of the mass.  So, looks like we packed our bags for nothing this morning.  

Baby Tag will have to fast for 4 hours and then he's getting biopsy #2 this afternoon, so we are for sure here for at least another day, if not more.  Aaaaaargh!   Stay tuned, we'll keep you all posted.

Tag Gets Discharged!

The doctor on staff spoke to Joann and I today and said that Tag's vitals, temperature, eating habits, etc. are all strong and that he sees no reason he can't go home until the results of the biopsy are reviewed by the specialist at Vanderbilt.  Joann was so excited with this news she broke down in tears right on the spot.

Before they let us go, we've been watching a bunch of videos that prove we are worthy parents... one on shaking baby syndrome and CPR.  I feel about as prepared as I did when they handed me my drivers license.  At least this time around I have a veteran mother in Joann who can help me figure out what I'm supposed to do.


We should be home later tomorrow afternoon and I am really looking forward to giving Joann a chance to get some badly needed rest.  Please all you Woodland Hillers, don't come visit unless you are dropping off a note or a treat by ding dong door ditching!  Joann needs her rest MUCH more than Tag does.

The biopsy review by this specialist could take another week, so it'll be nice to have the little man at home.

I took some photos of Tag tonight before Jo grabbed him for his feeding.  Please comment and tell me which (if any) is your favorite.  I have numbered them for easy reference.

#1

 #2

#3

#4

#5

#6

#7

#8

#9

#10

#11

Tag Scores Private Suite - 12/13 Update

Yesterday we came up to visit and Tag had been moved into room 11, a private suite (one of only two in the NICU).  I'm pretty sure it was because of his good behavior and ability to flirt with the ladies that afforded him this transfer.  We hung out with him most of the day and had grandparents from both sides eagerly visit and take their turns holding him.

Here's Tag with his cute Grandma, Marina Spence:

As you can see the little man was sportin' a cool cap given to him by the nurses.  Joann said it looked somewhat French, so she was talking to him with a French accent all morning.  He was also wearing a handsome outfit.  This is the first time I had seen him in clothes.

I wasn't feeling very well (with all the lack of sleep, go figure!), like I had a cold coming on, so I put on the mask just to be careful.  I told Tag I was pretending I was a doctor so that he wouldn't be confused as to who I was.  Take special note of Tag's Utah socks.  Very cool gift given by our friends Steve and Jill Rich.

Yesterday afternoon we all broke away from the hospital to go see the new Clint Eastwood movie, INVICTUS, about Nelson Mandela and South Africa's World Cup Rugby win.  Very good movie and even better break from all the hospital time.  After the movie, Jo and I came back to give Tag a little dinner.  He was very happy (and hungry) to see his Mom.

Now it's Sunday morning and I'm in the waiting room typing this quick update with haste as my Denver Broncos are about to face the undefeated Colts.  Joann's in giving Tag a little breakfast.  I think we'll be up here all day making sure he knows who his parents are.  Thank you for all your prayers and positive vibes.  Please include the doctors in your prayers as they are working hard to provide the correct diagnosis that will be the best long-term solution for the little man.

GO BRONCOS!

Spindle Cell Tumor

Okay, we got an update from the biopsy results.  Turns out Tag's "mass" is not a hemangioma at all.  It's a "Spindle Cell Tumor" that falls into one of three categories.
1) Myofibroma 
2) Infantile Fribroma
3) Sarcoma

The first two are mostly always benign and regress on their own.  If it is a Sarcoma, it is more than likely malignant and he will have to have immediate surgery.  There is a world-renowned pathologist flying into town on Monday to review the biopsy results.  She may want another biopsy performed at that time to get a look from another portion of the mass.

So this means we are here until at least Tuesday and remain on the waiting game to understand what really Tag is dealing with.  If he continues eating well, they may move him out of NICU and into another section of the hospital where Joann and I can be with him in a more private setting.

Joann and I are exhausted, but we gotta dig down and stay positive.  I've been doing a little internet research but haven't found anything worth posting here.  Thanks to everyone for keep us in your prayers.  Please keep us in your thoughts and send the healthy vibes our way!

Good Night Song

I found Joann a VIP sleeping chamber here in the hospital and the nursing staff hooked her up for a birthday nap.  While she was sleeping, I was sitting with Tag and holding him this afternoon.  He had just eaten and was a little fussy and so I came up with a silly song that put him right to sleep.  I wanted to write down the words before I forgot it.  Enjoy.

Oooooooooooh,
When I grow up, I want to have fun,
I want a glass of milk to chase my sticky bun.
When I grow up, I hope I get tall,
I want to place spin on every tennis ball.
When I grow up, I want to run & hide
I want to go head first down a slippery slide.
When I grow up, for the Utes I will cheer and
All the Cougar fans will think that I throw beer.
Chorus
Life is fun when I'm with my Dad,
He dreams up games & he makes me glad
We sneak and crawl and pillow fight
It's always hard to saaaaay, Goooood, Night.
Good night.

Joann's Birthday: 12/10 update

It's Joann's birthday today and if she had her wish of wishes, she'd be able to take her little boy home.  However, it doesn't look like that wish will come true...yet.  The biopsy results won't be back and analyzed until tomorrow...UGH.  This means we still really have no answers as to what Tag's "mass" is or what they will want to do to treat it. 

Speaking of Joann's birthday, the nurses got wind that it was her birthday today, so when we arrived they had made a little sign (with Tag's help) (see picture below)

Joann started crying when she saw it, and cried even more when she found out those hand and foot prints were actually from Tag.  Good job nurses!  Speaking of Joann, she is still exhausted and remains concerned about baby Tag.  However, she's her typical positive, upbeat self and we simply love our little man.  If anyone happens to read this post today, feel free to comment with your birthday wishes to Joann.  I'm sure it will make a BIG impact on her heart.


As for Tag, the good doctors are pretty sure it's a congenital hemangioma, but because of it's unique size, shape and placement, they are being very thorough and deliberate in their analysis.  More than likely they will put him on a treatment of steroids and beta blockers over the next few months which will decrease the blood flow to the mass while at the same time allow him to grow.  As to when he gets to go home, it depends on him gaining a little weight (I see no problem there, as he is nursing like a wild man since the biopsy).  So, depending on the biopsy results, he may get to go home real soon.

PS.  Let me answer an inquiry that many of you have had that maybe the mass is the remains of a twin that didn't happen or something like that.  According to the doctors this is easy to test for and there is no indication that the mass is related to anything like that.

Happy Birthday, Jo!

Tag's Halloween Costume

I wanted Jo to sleep in this morning, so I headed up to NICU on my own to hang with Tag and get him fed with some of Joann's magic elixir.  He's just sleeping peacefully so I thought I'd post a few pictures.  I've been joking with the staff that I'm a huge Halloween fan, and Tag just wanted to arrive sportin' a Halloween costume.  I gotta hand it to him, his costume is SWEET!  The elements of a good costume are:
1) It must be unique.
2) Either funny or scary.
3) Bonus points if it's easy to move around with it.


Tag's costume is very unique.  In fact, he's the featured patient at a dermatology conference tonight.  Already on stage...that's my boy.


UPDATE:  The doctors just stopped by on their rounds and they mentioned that the specialists are already viewing the tissue taken in the biopsy.  The main doc said they are cracking the whip as they want to get some answers sooner than later.  Stay tuned here.

Anyway, Tag's costume ranks very high on the scary scale.  He totally scared all of us when we first saw him.  Then to make it even cooler, they added some stitches to the mass following the biopsy (see picture here).  Most excellent costume, son!

The staff made Tag a cool nameplate for his crib.  Here's where he hangs out most of the time (see picture below).  

I noticed how they taped Tag's IV on his foot.  It looks like almost a perfect simulation for a snowboarding boot.  Good timing, since we just got some fresh powder! (see picture below).   

Charles "Charky" Spence, Tag's grandpa, came to visit this morning. (see picture below).

Marina Spence, Joann's cute mother and Tag's grandmother, came to visit this morning and has been a true champion helping us with our needs. (see picture below).

 

Howard Brinton, Tag's other grandfather came and spent some time singing to Tag.  Looks like Tag responded like the rest of us when grandpa sings (ha!) (see picture below). 

Father, son, grandson.  3 Generations. (see picture below). 

PS.  Thank you so much for all of your comments and well wishes.  We had Joann's brother Mitch and his wife Tiff put us up for a few nights at their beautiful home in Salt Lake, Aunts and Uncles bringing us food and many other offers for help.  We are really feeling the love! 

Tag Gets a Biopsy - 12/8 Update

** Please do not call Joann at this time.  She is exhausted and needs to rest!  I have launched this blog to keep everyone up to date on any news of Tag's adventures.  If you must speak to someone please call Mitch Brinton.**

Tag's getting a biopsy today at 5 PM.  Poor little man is hungry and they are making him fast just like an adult (seems ridiculous for a 3-day old) prior to putting him under, so he hasn't eaten for 12 hours!  We won't know the results of the biopsy for at least a day, maybe two, so we remain in the dark as to the proposed treatment.  

However, here's what a specialist on "hemangiomas" said today as he was visiting with Joann:

His feeling is that the Mass is a congenital hemangioma which really isn't a typical hemangioma.  Typical ones are present in one in ten newborns in some fashion or other.  With a congenital hemangioma, it's more like 1 in 50-100,000 cases.  There are two types, "Rich vs. Niche".  He's hoping it's a RICH because it dissipates fairly quickly on its own without needing any steroid or beta blocker treatments.  However, we have noticed it has grown a little each day.  If it's a NICHE type then they will perform some sort of treatment involving steroids and beta blockers of some type, but it remains unclear.

Really, though, the above information is only guessing until we get the biopsy results in the next 24-48 hours.

We will keep you all posted as soon as we know anything.  Thank you so much for all the prayers and concern.  It means a lot to us.  Meanwhile, here's some photos of Tag and Mom and Dad taken over the last few days.  Enjoy!

NOTE:  I haven't figured out how to make captions on this blog yet, but these first two pictures are of Jo and I having recommended "skin to skin time" with Tag.  The lactation specialist and the nurses said that a newborn really responds well to being skin to skin with the mother and father.  Tag really responded well to hearing my voice as he snuggled up to me.