I just had to...

Reese loves this picture and was sad I forgot to put it on the blog. She thinks Kean is so funny with his mouth open like a baby bird. Enjoy!

Oh Yes..... School's Back!!!

Happy Birthday to Kean... Happy Birthday to Kean... Happy Birthday dear Kean...
Today he is a whopping 3 weeks old. Hard to believe it was 3 weeks ago that I was competing for the title of Vomit Queen and struggling through contractions. But, as you can see, the best nurse in the whole world, Liz, was by my side to coach me. Where... you might ask... was the other coach? Ah yes, as I said, its a good thing I had Liz by my side. Here's my fearless husband just plum tuckered out from all the hard labor.

It's a good thing my cousin, Jay stopped by to give Byron all the moral support he needed to make it through the hours of labor.

Kean wouldn't wake up for anything today. Well, that's not true. He was awake some of the morning but had no interest in latching on. His NICU nurse pointed out that he is instead spending his energy growing. And boy is he-- he now weighs 1 full pound more than when he made his debut.

On the other home front-- the real one-- Holland and Greer had their first day of school.

Reese had to go-- of course, with her own princess backpack. Um-- who let her wear that outfit and go outside without her hair combed? Where are the parents?????

Holland will be in THIRD grade-- wow, how did that happen? And GiGi will be going all day as a first grader. They lucked out and got their favorite bus driver from last year-- Miss Dottie.

Okay, isn't this a pitiful little picture? Poor Reesey all alone as they drive off. Grammy made sure she gave her some extra lovin' today while Mom was at the hospital.

A Quiet Sunday

Our little munchkin had his first real bath today. .. and boy oh boy did he smell yummy afterwards.

I thought being immersed in a bathtub full of warm water would wake Mister Sleepy Head up...

But I was wrong... he slept through half of the bath! Notice his very red cheek-- that's where he got the tape pulled off yesterday after he yanked out his feeding tube.

I'm proud to say he did not pee in the tub. He held it-- until he got bundled up in his clean white towels.

Too bad we can't have these little warming lights over the bathtub at home. Kind of a cool feature.

As for the hospital report today-- he was too sleepy for session one of getting him to latch on and eat. But he did 14 minutes for his second session and therefore got to skip the feeding tube. It's slow progress-- but progress we'll take. He had several "de-sats" (de-saturations where his oxygen level drops). The doctor hopes its not reflux from eating. As always, they're watching him and hoping it's nothing. Luckily, Kean kicks it back up.. so that's a good sign.

The girls start school tomorrow. Big sigh... life will hopefully be a bit easier with the girls back in that routine.

Too tuckered out to dazzle...

So today wasn't as stellar as yesterday. Kean couldn't wake himself up enough to latch on for our first session-- so we did physical therapy instead. I work with him twice a day-- on trying to tone up his legs and arms. I also work with him on his mouth-- stretching out the tight cheeks and helping to stimulate the muscles. He latched on this afternoon for about 12 minutes. I guess he can't be a rock star every day. The doctor said this is normal-- good days and bad days.
Kean also pulled out his feeding tube today. Ick. The nurse had to thread a new one down his nose and into his tummy. He did okay with that-- but threw a good fit when she pulled the tape off his face (the tape that held it in place). Poor little guy, has a very red cheek.
Our good friends, Ron and Elly came over last night so Ron could show me some strengthening exercises for my legs and arms. I was embarrassed at how weak I've become. I could barely do ten reps of each exercise-- and these aren't anything difficult!!! My arms and legs are like toothpicks-- with flab. Oh joy. At least my walking is improving. I've graduated from the old lady stage to the walking stiff.

Great Progress

Today was a great day at the hospital! First off, my mom and the girls came up for a while. Holland and Reese got to hold Kean for the first time. The girls sang him songs (You are My Sunshine, Lullaby and Goodnight, Sleep Tight-- our ode to Lawrence Welk) and he seemed to love it. They are going to be the best big sisters and wonderful teachers! Kean was bright eyed and alert the entire time! Maybe because all of a sudden it was very loud in his little world-- but he seemed to love it.

Greer kept saying "He's a keeper" and Reese kept introducing herself to him as "Reesey".

Now for the medical update. Kean hit the FIVE POUND mark today!!! Yup, he's growing steady and strong. Plus, he breast fed during two feedings today-- in fact, for his second feeding, he did so well-- the nurses skipped the "Gavosh" feeding (the feeding through the tube in his nose). He's doing soooo well, I'm hoping to have him home sooner rather than later. What a rock star! Even the NICU doc was impressed. Our little miracle baby continues to dazzle.

I just got back from the "meet the teacher" night at Greer and Holland's school. It was one of my first big social outings -- back into the real world known as life. Along with 8 thousand other parents, I waited in line, filled out forms and wrote checks. It was wonderful to see many friends and dear teachers though.
Kean is still slowly making progress. I swear, that boy just gets cuter and cuter! He was awake for a good hour today-- the most ever. Awake and alert. I watched as a new baby came into the room next to us and then was released to the normal nursery after two hours. I have to admit, I had a few pangs of jealousy. The baby's mom and dad seemed so worried and yet, all was fine with their baby. I can't help but look at Kean and wonder what his life will be like. I guess I wouldn't be a mom if I didn't worry about his future and what he will and won't be able to do.
He did get a new roommate yesterday. That baby, Xavier, finally went home. The new baby, a girl, seems to be following in his footsteps. I've yet to see a single visitor. She never cries-- just sleeps in her incubator. Maybe her mom is recovering in bed... or maybe they visit in the middle of the night... UG.
Greer, by the way, had her annual "Mary K Day" today. Mary K started the tradition a few years back with Holland and then Greer-- where she takes them out for their birthday and spoils them rotten. Today, she took Greer on a shopping spree at WalMart and then to an afternoon at the Idaho State Fair. Greer has been so excited-- she even had a calendar to count down the days to her special day. Thanks to Mary K and all my other incredible friends who have helped my kids to feel so loved this summer.

Greer's First

Greer came with me to the hospital today and got to hold Kean for the first time ever. She was so excited-- thank heavens for "Kodak moments". We got up at the crack of dawn and went to see Greer's ear doctor. 2 1/2 hours later-- she'd survived a probe up her very numb nose, allergy testing and hearing tests. She'll continue on her steroid nose spray for another six weeks-- if the fluid in her left ear doesn't clear up-- she gets tubes again. Oh joy. It's always something. When we got to the hospital-- Kean was off having his kidney test (catheter and die) and the nurse told me all looks great-- even though we have to officially wait for the Radiologist to give me his report. But, alas, another miracle. His problems have cleared up from the ultrasound of when he was still in my womb. So our little fighter continues on.
Greer and I held him, cuddled with him and I worked with him-- then we left him to sleep and we went and had lunch in the cafeteria. Oh, the excitement of a six year old-- you'd think we were eating at Nobu's.
I had a delicious nap this afternoon and feel somewhat human for the first time since he was born. I must say, it only took me a few nights to get back used to my comy bed. I've put the 7 hospital pillows and the egg crate foam behind me (hopefully forever).

Can't they leave him alone for at least a day?

This will be a quick post-- I'm exhausted and still have that "oh so fun" task ahead of me-- pumping! I swear this every three hours is for the birds. Byron has resorted to calling me "Daisy" and says I'm part Holstein. And I have to say, I'm starting to agree.
We all went down to Grandpa Bodily's house for a BBQ and swimming with his family. They are all so wonderful. My brother took my mom to the Shakespeare festival tonight-- so I was dreading having to warm up dinner. I know, warm up dinner, instead of cook-- I'm pitiful.
I had another good day at the hospital. Kean was quite sleepy.. .but still managed to latch on for "recreational" breast feeding-- for about 15 minutes total (two sessions). He's definitely making progress. The Neo-natalogist came in to talk to me (I'm beginning to dread anytime one of them walks into the room). They are putting a catheter in him and shooting him up with colored dye tomorrow to do some more testing on his kidney. Eeee... I wish they'd just give the poor child a break and stop poking and prodding him. Tonight he was scheduled for another newborn screening. He's going to look like a Voodoo doll by the time he gets out of the hospital. At least, he'll be the cutest Voodoo doll ever.

Sweet Progress

Slow and steady wins the race. Isn't that the moral to the Tortoise vs. the Hare story? Well, that's our new motto in the hospital. Kean did great today. He latched on twice and remembered to keep breathing! We're making progress. The Neo-natalogist said he's doing great-- but it will all be up to him when he gets to go home. He's got to suck, swallow and breathe-- all at the same time. Quite a tall order for a premie with Down's. But I'm optimistic and thrilled with his hard work.
The Radiologist did an ultrasound today on his hips. There was concern that since he was in the womb without fluid and had his feet tucked up next to his face for the past three months-- that there might be some hip dysplasia. He passed with flying colors. All looks fabulous. Chalk up another miracle.
And finally, I had to share-- my dear friend, Gwen Castaldi composed a poem for our little Spartacus. It captures everything so perfectly-- I thought some of you might like to read what she wrote. I grew up watching Gwen on TV in Vegas. She was a true journalist and one of my earliest inspirations. She was the main anchor at my first TV station and had made quite the name for herself covering the mobsters in Vegas. If you ever see the movie Casino-- Gwen is the reporter who interviews Robert DeNiro. She's a wonderful friend and once you read her poem-- you'll see one reason why I love her so...

Precious
There he is,
sweet baby boy,
first known inside,
a belly picture,
a stirring,
an upstart,
growing to soon join
the human race.

The physical battle,
the bed rest, the waiting,
the anticipation,
the wish to
give birth without incident,
the hope
to give birth with health and joy,
to bring the cycle of life
around to the conclusion
of prenatal life Chapter One.

Now
he is here,
having arrived in life Chapter Two
in a flurry of pain and madness,
the chaos of bright lights,
medical tubes, humming monitors,
flashing sensors,
and the hands of neonatal caregivers.
At first,
we felt
such gut-wrenching news,
those haunting fears and worries,
the natural upset wonder of “why”.

Little Kean,
now the subject of studies and warnings,
the object of everyone’s attention
not only for his own sweet self,
but his condition that
brings with it
so many life challenges.

So we are off
on the road race of
growing up Downs.

We have established mileposts,
but no accurate maps.
We have professional medical input,
but no guarantees.
We have instead,
the chance to find out
what God will have us
see, feel,
cry about, laugh at,
cheer lead, learn and handle,
as we travel through
this new maze.
We will not judge
why God has dealt this hand
to us.
He is, after all, a human gift from God.

Kean has our unconditional
love, care and support
and that of many others.
This baby boy has
our faith
and that of many others.

We will encourage,
make progress forward
and take steps back,
all the while,
treasuring this baby boy
that has been given us,
knowing much more will be revealed
about him and his life in due time.
Tiny Kean
will have a life
like no other,
with his own individual footprint
on life, including all his
special traits, unique views,habits, learning,
wishes, joys, longings.
And accomplishments.

He is ours at all costs.
Precious.

-Gwen Castaldi
19 August 2009

Life Is Settling In...

You know I've been worried about how the girls have handled my long absence and all the stress we've been under--- well here's proof I had reason to worry! I can't begin to guess how many layers of clothing Greer has on her skinny little body. She obviously has quite the future in design ahead of her, eh? I also came across this little picture from the night I checked out of the hospital. The three women in the background are Mandy (l to r), Debbie and Tracey. I got to know many of the nursing staff quite well and they are all amazing. I miss seeing them daily!

And here's little Kean (I still want to refer to him as Spartacus) with the cone-head IV. This picture was taken Saturday afternoon. The nurses took his IV out later that evening-- and with the help of a lot of rubbing alcohol and Vaseline... I'm happy to report he has most of his hair. I did hear he let out a loud wail when they took it off. That's a good sign-- he rarely cries. Please remind me of this someday when I feel like all he does is cry.

And here's our brave little boy on Sunday afternoon. Byron and I think he looks like his old self-- well, as old as a nearly two week old baby can look! Greer likes this picture because she thinks Kean is showing off his "big" muscles!

I want you to know, I made it to the first hour of church today. My first real outing. It was nice to see so many loving faces. My day at the hospital was quiet and slow. Kean was very sleepy and never had the energy to latch on. That's okay, I'm patient. It always nice to get to cuddle with him. His ten day antibiotics are over! A reason to celebrate.

Tick, Tock, Tick, Tock

Another day down... means another day closer to bringing Kean home. They're telling me at the hospital to shoot for the middle to end of September.
Byron came up this afternoon and we were both excited to hear that our boy is getting his "unicorn" IV removed from the top of his head sometime tonight. Phew-- can't wait to see him with his normal, cute, fuzzy head. I made the nurse promise to really work at getting all the bandages and tape off his head without removing his hair. Byron did take a picture of his face with the IV on top-- but I'm not sure I'll post it. What do you all think? Yes or no?
Also, I finally got my hair cut today. It's been since March or April-- I looked like some long-haired hippie. It felt so good to get out this morning and do something for me. A huge thank you to my dear friend and long-time hair stylist, Kimberly for fitting me in last minute with my crazy schedule. She refused to let me pay-- so anyone needing a great cut or color-- she's at Genesis Salon in Meridian.
Gary and Carmen (my friends who just moved here from San Diego) took the 3 girls to see the movie UP. They loved it and it gave my mom a break and some much needed peace. We still have church members bringing in meals a few times a week. I just don't know where to begin to thank everyone. I know my family echos my gratitude.

The NICU Experience

Be glad you don't get the NICU experience every day. It's an interesting place. You go through a double set of security doors (you have to call the nurse's desk to get them to open) and walk into a large family waiting room. It has lots of couches, a kitchen area, lockers, a bathroom and even a play area for children. You have to get buzzed in through another set of security doors to get into the actual NICU. Once checked in, you go to a washroom and scrub down (like the docs do on TV before a surgery). Currently, there are 48 babies in the NICU. It holds nearly 70.
There are typically 2 babies per room. Kean's roommate (I have to guess because the nurses aren't allowed to say anything about the other patients) is pretty healthy and about ready to go home. Just call me Sherlock. He spent an hour and a half being monitored today as he sat in his car seat. When we first got in there, I overheard one of the nurses asking when "Xavier's mom was coming home from vacation"... It was one week before I ever saw this baby have any visitors. His mom has come in for a short visit (10 to 15 minutes) both yesterday and today. I am cursed with my ol' reporter background-- I find the other babies "back stories" fascinating.
I met another mom (she seemed really normal) while I was eating my lunch today in the family waiting room. Kelly is from Hailey (about 3 hours drive). She had twins 8 weeks ago. One of her girls only lived a week. The other girl is fighting and surviving the ups and downs in NICU. Kelly is living in a motor home in the hospital's parking lot-- with her husband coming to join her on weekends. While we were talking, a family of about eleven (very young mom and dad and lots of relatives) walked out of the NICU and into the waiting area-- all sobbing. Ug. It seems everybody is struggling in there. Yet, I know Kean is in the best of hands and he will always be our little miracle baby. The NICU can be horrifically depressing on one hand and the most peaceful, quiet place on the other. My cousin Leah (who had her twins spend a long, long time in there) put it perfectly-- in the NICU, Heaven has never felt so close and yet so far away.

Such a Big Boy...

I couldn't resist putting another cute picture of Kean (pronounced KEEN-- rhymes with Dean) on the website. This one is with Grammy (before the Unicorn IV was put in his head). Sorry, it's kind of dark. We didn't use a flash.

Another good day for Kean and I in NICU. We had our second male nurse-- nice guy-- but not as "demonstrative" as Dan was yesterday. Kean latched on for eight minutes today-- a new record. He's making progress each day. I'm so proud of him. I'm so hoping to get him home sooner rather than later. I forgot to mention that I met with the hospital's genetic counselor yesterday. She went over the Karotype testing results with me-- he is considered in the general Down Syndrome population. There are some variations of Down's-- but he does not fit into those categories. As I mentioned in a previous post, we won't be able to tell where he fits on the spectrum (how severe or how functioning) until we see him grow and see how he reaches his milestones. However, after seeing him do so well with the latching on-- I think he's going to be a rock star. Otherwise, the meeting with the Geneticist was quite depressing. She warned me that 30 to 40% of Down children get Leukemia in the first five years of life. They also have a high propensity for Diabetes, Alzheimer's, Gastro problems, hearing problems, eye problems, dental problems and on and on and on. Of course, after they've scared you to death-- they say they are just trying to educate you and make you aware of what "could" happen in the future. Byron has a better take on it-- he points out-- look at all they worried would be wrong with him when I was in the hospital. Until something happens and we have to deal with it-- it's all just static! Why they overload us parents with all this info in the beginning when we are just trying to survive the NICU experience and heal from giving birth-- is beyond me. I think I'll be writing a book about all this someday...

Stacy Hoffman watched my girls all afternoon and cleaned my house!!!!! I hear Sue Pugh helped and is the one who left the most beautiful bouquet of flowers on my island. I don't know where to begin to thank all of you for all of the acts of kindness. My thank you list is rivaling Mt. Everest.

A day with no big events....

Ahhhh... made it through another day. Kean just gets cuter and cuter. The IV on his head (the nurse calls it a unicorn IV) is still working. Keep your fingers crossed. We need it to stay effective for a few more days of antibiotics. He's still sleeping a lot but his stomach infection is looking better and better with each day.
Kean had his first male nurse today, a guy named Dan that I just loved. Talk about compassionate. This will make you smile. As I mentioned yesterday, we are doing "recreational" breast feeding-- trying to get Kean used to the breast and trying to get him to latch on for a minute or two (which he did today for a whopping 4 minutes). What a fighter.
Anyway, today marks the first day I've ever had a man (Dan) show me-- using his own breast-- how to manually express a few drops of milk the correct way. By the way, "manually" is not meant as a pun. It was a sitcom in the making.
Some of you have asked about my physical strength. I can tell you that I've been blessed to quickly get enough energy to walk to the NICU without the burning and swelling I had last week. So progress... Just don't ask me to help you move.
Thanks to Pam and Elly for taking me and picking me up today.

Drum Roll Please.....

We FINALLY have a name for Sweet Baby Boy Barker...
Nathan Kean Leavitt Barker
So whaddya think?
I know it's a mouthful. We didn't want to go with 4 names... but once I tell you the back story of his name... you'll understand.
We had settled between Kean (which means fighter) and another name we liked. But Thursday night, after we'd found out our baby had Down Syndrome, our Bishop came over and gave Byron and I blessings (words of comfort we believe are from our Heavenly Father). After he finished, Bishop Firmage said as he was giving the blessing, he kept wanting to refer to the baby by a certain name. Of course, we told him he had to tell us what that name was. He said "Nathan". Both of us were like hmmm. We hadn't really even considered it (especially since one of my best friends in the world-- Stacy had named her oldest son Nathan).
I looked up the meaning of Nathan that night and it means "Gift of God". If you had heard the blessings from our Bishop-- you'd understand how fitting the name would be.
The next day, I walked into the NICU and as we were working with the baby-- Pam, our nurse asked me if we had chosen a name. I told her we were considering Kean and Nathan. When I said Nathan-- she let out a little squeak of surprise. When I asked her what that was all about... she said she had felt inclined to call him Nathan all morning.
So hopefully, you can now understand why we've been so torn and why Nathan has to be part of his name. Plus, our adopted "Grandpa" Bodily's middle name is Nathan. We've named each of our girls after people we deeply love and respect.
We felt like both names fit him-- he is a gift straight from Heaven and yet he's been such a fighter to get here and will likely have some pretty big battles in his life.
Byron's family tradition is to use the mother's maiden name as the middle name. So there you have why he has a mouthful of 4 names. We'll likely call him Kean. Hey, he has to have an unusual name to fit in with our family.
As for NICU today--- it was a pretty good day. His PIC line failed at 6am... so by the time I got there this morning, he had a honkin' huge IV sticking out of the crown of his head. Our nurse put a hat on his head so I wouldn't have to look at it. I didn't have the heart to ask how many tries it took or how long. I will tell you, he reminds me of the old "coneheads" from when I was a teen watching Saturday Night Live.
His infection is looking better, as are his counts.
I spent about an hour total today working with an occupational therapist to stimulate the muscles in his mouth. We even "practiced" breast feeding and he actually latched on for about a total of 2 minutes. That's huge. I hope I'm not getting my hopes up... but I think he's going to be on the higher functioning side of Downs.
I also got pee'd on for the first time. I jinxed myself and told my Aunt Daleen that he hadn't done it yet... and whaddya know!!!
He's a real boy!

Another Day with No Big Trauma

We have some new pictures to show you of "Sweet Baby Boy Barker". Byron held him for the first time Sunday afternoon.

Can you believe his fingernails? He came out needing them clipped.

He spends about 99 percent of his time sleeping. Isn't he the yummiest?

He wore his first clothes (hospital clothes) on Sunday. The nurses leave his right arm out of the clothes.. that's where his PIC line is.

We had a good but exhausting day in NICU. His infection is starting to clear and he was awake this afternoon for about 25 minutes. The therapist showed me several exercises to do with him to try and get the muscles strengthened in his mouth and tongue. This Down Syndrome journey is going to be a long one-- but he's so dang cute, he's worth it.

We had a special Family Night tonight with the girls-- where we read (okay, Byron read it-- I couldn't do it) a children's storybook (thanks to their Aunt Missy and Uncle Craig for the inspired gift) about a big sister who's brand new baby brother is diagnosed with a thing called Down Syndrome. It's all about the things she'll be able to do with her baby brother-- it just will take more time to teach him than it would another baby.

Our girls were quite pleased with the comment that they are very smart and fast girls-- so they'll be the perfect teacher for a special little brother like this one.

Oh... he will have a name. It's driving me crazy too!

A Decent Day

Today was a much better day than the last few. We had no huge traumas in the NICU today and that was a much needed break. I told you about the day of IV attempts. The IV they finally got into his head -- failed at 2:30 in the morning (Saturday morning). So on Saturday they decided to put a PIC line into him. It's another sterile procedure (where they put a line into his vein in his arm and thread it up and across his chest to a point just above his heart). I was kicked out of his room for a brutal 2 hours. It took three tries before they got it in. Instead of an IV, this is how they will give him his antibiotics. So Saturday was once again, draining. I don't know how any parent handles watching their children suffer. I guess I should feel blessed my baby doesn't have cancer or some other disease where they must be in frequent pain. Poor Spartacus was really stoned on Morphine by they time they let me be with him late yesterday.
Today (Sunday) was a much better day. His infection is looking better-- his counts are better and he just seemed better. For the first time, he really opened his eyes and kept them open. In fact, they had me try and breast feed him. It's actually called recreational feeding. He's getting all of his nutrition through a line in his nose-- so the breast feeding was really just an exercise in trying to get him to open his mouth. It wasn't very successful. However, I was told today, that when it comes to Down Syndrome babies-- everything will take much longer and more patience. So here's my first lesson in being his mother.
Thank you everyone for giving me the space I so need right now. I've read a few emails (it will take me some time there are nearly 200) and some of your comments. Thank you. I love you all!!!
P.S. We are sooo close on a name. I just have a pleasantly stubborn husband who is in no hurry.
Also, my brother, Marc and his wife Rachel saw him tonight for the first time. Rachel took some new, very cute (I swear I'm not biased) pictures and so hopefully, I'll get them from her and post them.

Thank You

Okay, I thought I couldn't feel any more loved. Your comments and expressions of love have touched me once again. I consider my friends and family one of the greatest blessings in my life. And once again you are all there for myself and my family. I am so emotionally raw-- your messages have been healing. Thank you.
I overdid it yesterday and could hardly walk or think coherently last night. Therefore, I only spent half the day at the hospital today. My mother lent her car to my brother and his family to take to Yellowstone for the week. She took the girls to the Discovery Museum and lunch today after dropping me off.
Our son has developed a red, slightly swollen area on his stomach. One of his counts has gone from a 1.1 to a 9 (don't ask me which count-- there are so many). An X-ray shows he has some inflammation of one of his bowels (they think) and an infection. They removed the IV from his belly button and suspect that may be the cause. When they put it in the first day-- it had to be a completely sterile procedure. They wouldn't even let Byron be there and had some problems getting it in. Today, the doctor ordered a regimen of antibiotics. But a number of them could not get an IV in him. They tried for an hour and gave up. He has my small veins, the infection makes it harder-- as does the Down's to get one in. They decided to wait until after he had another feeding to try again. Thankfully, my sister-in-law, Melissa (Craig's wife) was with him in the morning while they tried and failed to put the IV in.
Meanwhile, my poor mom (the kids have run her ragged) locked the keys in the car. Byron and his brother, Craig had to go break in and rescue her. But it was for the best. Byron and Craig arrived just in time for the nurses to start the IV process again. I couldn't handle all the poking, stabbing and bleeding-- so the boys stayed in there to comfort the baby. It took countless tries and over an hour once again to get the IV in. (I walked the halls and cried into the arms of one of my nurse friends down in Labor and Delivery). The IV is now in his head-- and it looks awful. He has bruises and injection sites everywhere. My sister-in-law, Rachel reminded me that the baby will not have a memory of this. Thank heavens. If only I could handle this better. I know I need to prepare myself for the roller coaster of the NICU-- but I'm not cut out for this. Somehow, I'm going to have to get stronger. It's a good thing I had a shorter day today at the hospital. I came home and literally crashed. We won't see if the antibiotics will make a difference until tomorrow.
By the way, we came home to a Lexus SUV in our driveway with a card on it from our good friends, Sally and Jonathan-- to keep it as long as we need an extra car. (I was secretly hoping it was a gift from the hospital for not firing any nurses or going insane during my stay). What a sweet gesture-- especially if you only knew what they have already done to keep me sane and to help my children. As I said at the beginning of this post, my friends have been one of my most treasured blessings in this world.
After two nights, I'm finally getting used to being home. My comfortable bed felt all wrong the first night. Isn't that crazy? I guess I missed the seven, vinyl hospital pillows that surrounded me in my "staycation" stay. The girls have been a challenge. It is soooo loud at home. Byron warned me it would be a shock. But what has been the bigger shock is that even though we thought the girls were handling this so well-- they have been saying things to me that break my heart. Holland today told me she thought the baby was evil-- because he had taken me away, made me hurt and made me cry so much. We've tried to talk through a lot of these "left field" comments. But it has been a painful and eye opening experience to see how their little minds have processed our trials. My mother has been such a calming and loving help. She's filled in the blanks for me when I have been left speechless and drained.
Our Bishop came over last night and gave both Byron and I blessings of comfort. It has made a huge difference for us. We are still very frightened and feeling inadequate for what we face but we realize we have a very special spirit who has been entrusted to our family. And already, as I watch him react to the horrendous amount of trauma in the hospital, I've seen such a sweet and strong little personality emerge. I miss him so much when I am away.

Our Life Has Changed...

I'm sorry I've been so silent over the past few days. We've, as you are about to find out, have been dealing with an awful lot. Over the past several months, we have witnessed many miracles and for that we are so thankful. The birth of our baby was even more evidence of how we have been blessed. As you know, we avoided a C-Section and our little boy came out bigger than we ever could have hoped for. And then when he cried and cried-- it was the sweetest sound I've ever heard. I just sobbed. My most beloved nurse, Liz was emotional and even Dr. Lovelace. He hugged me and said experiences like this are why he became a doctor. Every prayer uttered over the past 75 days was answered ten fold. Our son had lungs!!!!!
About an hour after the birth, the Neo-Natalogist came into our room to tell us they had seen a few signs pointing to Trisomy 21 (Down's Syndrome). So we immediately went from the highest of highs to sheer worry. A one hour ultrasound of his heart-- showed only an open flap (very common for premies-- and will likely heal on its own) and not the dreaded heart ailments usually associated with Downs. Blood was drawn and sent off for chromosome testing. We were told to expect the preliminary results on Friday with the final results coming in two weeks.
Those preliminary results came back today (Thursday) instead. And they are positive. The doctors say he has Down Syndrome and the final results will just confirm it. So as you can imagine, we are reeling with the news. We do not know how severe his Downs will be. That will be determined as he grows. We are comforted with the fact that he is not saddled with any of the huge physical challenges we had feared would come with the situation I had faced in the hospital. We are so grateful for the prayers, fasting and blessings that have worked those miracles. It has been an extremely emotional time for us-- so I hope you can understand why we have not checked emails, phone messages or been home much. We just ask that you give us some time to grapple with and adjust to what we have ahead of us. We are emotionaly exhausted and ask that you hold off calling us and instead give us time. We feel your love and know your heartfelt intentions. And we are so appreciative. We will keep you updated via the blog. It may not be every day like it was when I was hospitalized but I will keep you updated.
We already love this little boy more than we could ever express with mere words. As for his name... we had it narrowed down to two names-- but now we are not sure they fit. So we will let you know when we know. Thank you from our hearts for your continued love, prayers and support.
Lonni and Byron

New Pictures

It's Stacy again, I know, I know ... you are all wanting to hear from Lonni, but for now I guess you'll just have to settle for me. ;)

Lonni got to hold her new baby for the first time today. She said it was heavenly to hold him and that he felt a lot smaller than he looks. It lasted a precious 30 minutes.

In the pictures you can see Spartacus' "tanning bed." It's for some sort of Jaundice therapy. He's also on a feeding tube. If I'm correct, I think you can see the tube in the third picture. Isn't he just cute. Can't wait to meet him in person.

Lonni said they are still running some tests regarding his health. They'll find out more by the end of the week. So please everyone, still keep them in your prayers.

Spartacus Update

Hey everyone, it's still Stacy, Lonni's "Guest Blogger." Spoke with Byron briefly to get an update. He says Spartacus now has his "snorkel" mask off and is doing fine. Probably later today, Byron will send me new pictures to upload to Lonni's blog without the mask. Lonni is being released from the hospital tomorrow. Hopefully blue skies and fresh air won't be too much of a shock to her system! We love you Lon, you are a trooper extraordinaire.

First Look at the New Cutie

PS-Spoke briefly to Lonni. I guess "Spartacus" was actually quite purple when he came out, but pinked up quickly with oxygen.

Miracle

I am thrilled to announce "Spartacus" is here and he and his lovely mama are doing well. I just spoke with Dee and burst into tears at the good news ... as I am sure you all are while reading this! We have truly witnessed a miracle.

"Spartacus" Barker was born at 3:56pm, weighs more than they anticipated ... a whoppin' 4 pounds, 4 1/2 ounces and is 17 3/4 inches long. He was born without needing a c-section and Byron told Dee he came out crying and mad as #%$*! (Byron says that's a Barker trait!) He was a tad purple, so they gave him a little boost of oxygen, but he's breathing on his own. In fact, his APGAR score (says how healthy a baby is when born) was 8 out of 10 possible.

I'm trying to get in all the details I was told ... "Spartacus" has light brown hair ... he's in the NICU, but just because he's premature and Dee says he's kicking his little legs and everything just works!

What a relief. Again, I can't believe what a miracle we have witnessed. Welcome little Barker boy!

No News

Boy, this is killing me! I called Lonni's mom Dee about 20 minutes ago and she hasn't heard anything. She will call and I'll post as soon as we have something to report.

An Update

Just spoke with Lonni's Mom. The labor is progressing and the baby still looks strong, so they are going to give Lonni an epidural soon. So far it looks like they will be able to have a normal delivery (not a c-section). I'll write again as soon as I hear anything. Obviously Lonni won't be reading this right now, but we're praying for ya Lon & Spartacus!

Still Waiting

Hey Everyone! (This is Lonni's "Guest Blogger" Stacy)

I just got a call from Lonni's Mom. I about had a heart attack when the phone rang, but no big news. They were doing tests, etc. for the past few hours and they just started Lonni on the Pitocin to induce labor about 45 minues ago. I'll post again when I hear something.

Farewell My Longtime Room...

Well, here it is on the eve of Spartacus' debut and I'm waiting for monitoring before trying to get a decent night's sleep. I've had a parade of nurses and even my friend who cleans my room each day come in and say goodbye, an early congratulations and good luck. I've really been blessed with dear friends who work here at St. Lukes. Byron and my dad gave me a priesthood blessing this afternoon-- so I really feel calm and am not fearful or anxious about tomorrow. I've thrown some pictures on I'd thought you'd enjoy. Here's my wall of certificates (the nurses gave me for each week in here). We took them all down today.
I can count on two things with each family visit: first, Reese will snuggle in bed with me. Second, she will likely be wearing her favorite blue skirt and blouse. I think in the ten plus weeks I've been in here, she's worn this outfit every visit except for 4 times.

This is the dry erase board in my bathroom, where like a prisoner, I've been keeping hatch marks of each day I survive.

Yesterday (Saturday), my family held a "Cowgirl Roundup" for the girls in the family. It started out with each girl getting her hair braided and freckles painted on.

My mom made little cowgirl vests and embroidered horse purses for every girl.

On top of the vests and bags, Aunt Rachel made each of the girls "Sheriff's Badges" with their names on them: Ropin' Reese, Giddyup Greer and Howdy Holland. Here's all the girls doing their very best Yeehaw!

They did about a bazillion activities. Grammy (Saint Dee) is helping Reese "bedazzle" a bandanna.

Portraits were taken of each girl and each family in Aunt Dana's barn.

On top of taking care of my kids, Saint Dee was in charge of all the food-- gotta love the jello horse head (I like to think of it as an ode to the Godfather trilogy).

Nanny (Aunt Dana's mom who is an artist) had all the girls make clay Indian pottery. That's my niece, "Atta girl" Addison in the forefront.

Games, stick horse relays etc. were played in the yard. Here's GiGi playing horseshoes.

Holland (Miss Competitive) who pouted after losing one of the contests, came back to win the horseshoe competition.

Don't laugh, but all the younger girls stripped off their shirts to paint miniature horses.

This has nothing to do with the Cowgirl Roundup... but I loved this picture of Reese doing Natalie's hair. Natalie is Dana's only niece-- and her family is now part of our family.

After the girl festivities, the dads and the few nephews in our family were welcomed home with a pretty fancy dinner. Saint Dee had a horse pinata for all the kids. Because, as my girls say, you can't have a real party without a pinata. Good advice for all you singles out there.

Finally, here's Reese sitting on our dog Zoe. Notice how all is right with the world until...Yup, you guessed it. The Z dog tossed her. It's hard being 3.
But Grandpa's can always make everything right again.

Here's to tomorrow. Thank you, thank you, thank you for all of your love. I'm approaching tomorrow with an army of support!