Where Do I Begin...

The overwhelming love and support continues to pour into the Barker home. You'd think after bringing in meals and doing countless kind acts for our family since the end of May that people would be burned out-- but the love continues. Our Bishop's wife, Sonia Firmage brought in the yummiest dinner tonight (homemade lasagna, garlic bread, salad and strawberry pie)-- so much food, we had Grandpa Bodily up again. So he thanks everyone for all the acts of service too!
Keep in mind, friends and church members have been bringing in meals for our family about three times a week (for 18 weeks). And that's just the tip of the proverbial iceberg. Remember, I told you about coming home one day and Stacey Hofman had left over a dozen bottles of homemade Tomato/Barley soup for our pantry.

Well, this afternoon, Angie Stephensen brought over 25 bottles of homemade applesauce.

Each bottle is labeled "You are loved". I've been feeling the love for months now. In fact, I could seriously write a book about service. Not how to do it-- but how it feels to have so many people do so many amazing things. I can't begin to tell you all that has been done for us. It is truly mind boggling. I've been trying to keep a list for thank you notes and I have now filled five note book pages. Be patient with me in the thank you notes department.

Kean's private "part" looks much better today. He's been a bit edgy-- and the most surprising thing is that he has gone from eating every three hours to every two to two and a half today. You'd think the poor kid was starving. I'm hoping he'll get back to his normal eating schedule tomorrow-- no make that tonight. Last night was a rough one. Reese had nightmares about some stray dog coming into her room and trying to eat her nightgown-- this on top of all of Kean's feedings-- and that torturous invention known as Kean's heart/apena monitor going off.

Finally, Byron and his brother, Craig are leaving for Montana on Thursday morning. They are taking Holland and Greer with them. Reese, of course, is feeling left out. But she's just too young to be on the farm while Byron and Craig work. She came in tonight begging to go to "Hannah Montana". We'll now forever have a new name for Byron's home state!

The Big "C" is behind us!

It's done. Thank heavens.
And both Kean and I survived.
We (my mom, Reese, Kean and I) went to the doctor's office at about eleven. Kean had to go three hours leading up to the procedure without eating... so he was starving-- but brave.
Dr. Bouquard had me sign a bunch of papers and I have to admit, I almost called the whole thing off on the final form-- when it said there is no medicinal reason for circumcision, it is an optional procedure. The same form talked about side effects-- so I was very tempted to grab Kean and run. But I figured if most moms can be brave, than darn it, so can I.
The doctor was darling and took little Kean. I could hear him cry-- but I held it together. They brought him back to me about 25 minutes later-- with a few tears in his eyes, but he was calm and HUNGRY.
He's been a bit off tonight (wants to be held) but for the most part is doing great. I'm so glad to have this done. And I'm so glad I have only one boy!

Home Sweet Home

It is sooo wonderful to be all home with no trips to the hospital! Byron is finally feeling well enough that he is holding his son. He put himself on a self imposed hiatus until he got better. Don't know if I told you, but Kean has weaned himself off the breast. He will only take a bottle. So I'm still pumping. But there is a very bright side to that, Holland, Byron and my mom can all take turns feeding him.

I'm sure its very difficult to tell from these photos (where are the smiles?), but we are all happy to have him finally home. We weren't sure we'd ever see these days. What a long, amazing journey. We have grown so much as a family and will forever love and adore all of you for all of your support.

I have to mention, Holland was given the assignment in school to build an "insulation" box, one that will keep an ice cube from melting. Holland came home and we discussed some ideas, then she went down to Grandpa Bodily's house for some advice. He's a retired engineer. A half hour later, they come back with the box built. They did this the day before we brought Kean home from the hospital. I love that man! He saved me!

They put a little compartment for the ice cube to sit inside of a box full of foam. And guess who won for her class? Holland-- her ice cube kept its solid form the longest. So here's the winning duo with the winning entry!

Holland proudly informed me, she sawed the foam and everything. Cool, eh?

Looks like we dodged that one...

First off, let me address the flu issue. I'm feeling much better today. With my mom here and Bryon finally feeling "mostly" better, I was able to get in some good naps. So, let's hope I will escape what hit Byron so hard and for so long. (Of course, if you know Byron, he doesn't know how to go to bed, be sick and get better-- until he's forced to. That's probably why he was sick for a full week).
It is absolutely WONDERFUL having Kean home. Reese is my big helper. She's "diaper girl", "lullaby girl" and "bath assistant". Here she is all proud as a peacock after giving Kean his first bath at home.
Obviously, Kean loved his bath. Here's his day: sleep, eat, poop, sleep, eat, poop, etc. He's pretty kicked back and rarely cries. And I'm certain, he doesn't quite know what to make of all the noise and constant blurs of his sisters running around.

He's had a busy few days at home. His monitors are a joke! He's only had one "actual" breathing episode-- and he kicked himself right back up. So no biggie. However, the monitors have gone off many, many times (mostly in the middle of the night) where he has pulled off the leads (sensors) or the battery is low or something else rather stupid. I securely taped on his new set of leads and haven't had a problem since. So we're learning.

This is Nancy, the home health nurse assigned to visit our home regularly to, I guess, make sure I haven't ruined him or something.

His bassinet, for now, is in my closet. Don't laugh, it's close and quiet. And it's beautiful. Ron and Elly made if for their son Mark (who is now 15)!!

Anyway, Nancy said he's gained weight and looks fabulous. So she's not coming back until next Wednesday. That was on Thursday. Stacy and Elly came over and cleaned my house while I took care of Reese and Kean and tried to get a nap. They are such incredible friends, even though I felt pretty silly letting them clean.

I took him to the Doctor on Friday. Once again, he was a super star. Dr. Sandstrom, my pediatrician, thought he looked wonderful. He has a clogged tear duct, so bring on the pirate eye-- (Holland had the same thing). She said he had decent sized ear canals-- which is great news. Most Down's babies have such small ear canals you can never tell if they have an ear infection-- but she could see through his. So yippee.

And we had our first visit from his Occupational Therapist, Libby. She also, thought his tone and progress was pretty darn good. She'll return next week.

And then, as you know, my mom arrived. Big sigh.

He's scheduled for his circumcision Monday morn. I know I can do this!

How funny to think when I first found out I was expecting a boy, I thought, uh, how am I ever going to handle him getting circumcised. Now after all he's been through, this hopefully, will be no big deal.

My Pullitzer Prize winning entry for writing...

Baby good.
Girls good.
Byron flu.
Lonni achy and chills.
Oh no!
Gotta love face masks.
White horse on horizon... Grammy is here.
Phew!

P.S. have new pics to add but will have to wait.

There's No Place Like Home!

Pinch me! My news is almost unbelievable to me-- after 45 days in the infant intensive care unit, today we were released. Joyce was Kean's nurse the last few days. And that's Dr. Meyer, the Neo-natalogist on the right. He's the guy who gave us our walking papers today. Oh, bless him. Maybe I should rephrase that... he gave us our "riding papers". To carry the baby out of the hospital, they made me ride a wheel chair. Been there, done that, so it wasn't so bad. Kind of a "for old times sake" ride for me.

Here's Kean all snuggled into his car seat with his monitors and my car full of tons of hospital paraphernalia (diapers, bottles, PAPERWORK, stuffed animals, clothes, blankets etc.).

Surprise, surprise, the Barker girls were waiting when we got home. (The discharge process took all day). The girls... were, well, let's just say giddy.

Talk about baptism by fire... Kean went from the dark, quiet of NICU to loud, loud, non-stop chattering girls.

Ahhhhh, it's wonderful to be home.

Inch By Inch

I have to admit, I was dreading going up to the hospital today. I'm just so tired of it all. Thankfully, it looks like the trips are almost over. The Caffeine medication seems to be making a big difference. Kean's Oxygen desats are finally slowing down. So the doctor put in a prescription to my pharmacist that I'm supposed to pick up tomorrow. I will also be meeting with the guy from the company where we will be renting his monitors tomorrow to learn how to work the darn things. We don't know if Kean gets to go home tomorrow or Thursday. It all depends on how he's doing. I'm ready either way!!!!!!!!!!!
The girls are giddy with excitement. And my mom is coming back up here on Thursday. She wisely thinks I'll need some help with the kids, especially if I'm up on and off all night with the baby. Byron and his brother are heading to Montana next week to see his parents. Byron's 91 year old father fell and cracked his ribs. It never ends, does it?
One final note, I'm officially nominating my friend Stacey Hofman for Sainthood. Anyone have any connections with the Pope? She has coordinated babysitting for Reese, orchestrated having dinners brought into my house for 17 weeks, visited me countless times in the hospital, laughed with me, cried with me, cleaned my house, etc. etc. etc. She picked Reese up today from Preschool and brought her back to my house for a nap. When I got home today, there were 15 bottles of homemade tomato and barley soup sitting on my counter top-- all ready for my winter pantry. Plus the nicest, sweetest note you've ever read about all these friends of mine who helped make it with tomatoes, onions etc. from their gardens. It was signed, "Love, the Soup Committee". I can't feel sorry for myself, when I have so many blessings in my life.

I Survived Rooming In... But He's Still There...

Kean is six weeks old today. Hard to believe that if you add up the six weeks I've visited him daily with the 11 weeks I stayed there-- I'm now at 17 weeks of being at St. Luke's each day. That's insane. Thankfully, I'm not. Yet.
Saturday afternoon, Kean had his car test. Basically, they buckled him in and had him sit there (all wired up to monitors) for 1 hour and 30 minutes. He passed, barely. But he passed. So check that off the hurdle list.

He looks so tiny in his car seat.

After we made it through that, we moved into our room in the NICU. My sister-in-law, Rachel sent a packet of placards with each month printed on it-- to show his growth. So I had to take a picture (since he's already 1 1/2 months). He's changing daily and what a cool way to show those changes.

Anyway, the night of rooming in was a disaster. He chose that night to have an unbelievable amount of oxygen de-sats. His alarms went off ALL NIGHT. I swear, being generous, I probably got a whopping 1 hour of sleep. So Dr. Snyder came in the next morning and told me we had 3 options: 1. room in again and see if he just had a bad night. 2. put him on medication (Caffeine) to help with his immature breathing and send him home in a few days with monitors or 3. conduct a swallow study (give him bariatric medicine and then shoot a series of x-rays that show if he is having reflux or is aspirating). I chose to go through a second night of torture-- rooming in.

Last night was a lot better. I got probably 4 hours of sleep (good practice for when he comes home, I guess). He still had his desats-- but not nearly as many. So here's the plan. They put him on Caffeine today and now have to watch him for two days. They think I'll be able to bring him home in two days-- on the medicine and on monitors-- monitors we hear sound about as lovely as a smoke alarm going off. Byron will have to figure out a way to somehow muffle the alarm. If I have three girls waking up with me each time the alarms go off-- I'll go off.

Finally, here are my two favorite NICU nurses. Dan, above, gave me the best advice yet-- to treat Kean like a regular child. If I treat him like he has Down's-- he will act more like he has Downs. Plus, he's the one who showed me how to self extract milk from my breasts. Gotta love a man so secure!

And meet Pam. She's the one who is responsible for helping us name Nathan-- Nathan. She's the nurse who had to stop from calling him Nathan before we had told her we were thinking of that name. Plus she's Kean's cuddle partner. He LOVES her and so do we!

The Roller Coaster is on the Up...

Guess what???? Kean got his feeding tube out today. Wow-- a cute face with no tape!!! This is wonderful news. I'll take a camera up tomorrow. You won't recognize him. Plus, he's getting cute, yummy, chubby cheeks. He's now at 6lbs and 4oz. That's exactly 2 pounds over his birth weight. And he did fabulous today. I'm all set to room in tomorrow night (Saturday onto Sunday). So that will be the true test. But I can say, things are clicking for Mister Miracle-- and I'll be shocked if we are not taking him home sometime in the first part of next week. I'm not getting my hopes up-- but he is a superstar. Plus, c'mon people, nearly 6 weeks in the NICU is long enough. He's earned it.
Perfect timing too. Tonight they are officially shutting down the NICU to everyone EXCEPT parents and grandparents. There was a huge, pro-football looking security guard stationed at the first entrance to NICU today. I jokingly asked him if he was there to keep all the little germy kids out. He said they had a man (father perhaps) threaten to take his baby out of there. Oh, the daily drama. Mark my words... one of these days we'll see Hollywood set a NICU unit as it's backdrop for some new hour long drama. I could help them with countless storylines! Maybe that's my way to pay off the growing set of hospital bills. I could put screenwriter on my resume just under professional hospital hanger-on-er.
Greer update: A few hours after moaning and groaning on the couch and a dose of Tylenol, she was running around. She had no fever during the night and was fine this morning. She begged to go to school. So she did. The head of NICU had to give me the okay to come in-- but only if I wore a face mask. They aren't messing around with this flu stuff, are they?

Wow... what a crazy day...

Whoosh. I'm glad today is winding down. Life is never dull these days. I'll hit a few highlights. Kean was great today (again). A little sleepy for his second feeding, but still doing great. Plus, it's always fun to give him a bath. He also got a new roommate again. He had a new one yesterday afternoon-- she was gone when I got there today and another little girl in her place. When I arrived at the room this morning, it was curtained off and had a no entry sign-- saying a sterile procedure was in progress. I about had heart failure-- until one of the docs noticed my look of shock and said it wasn't my baby-- but the other one. I guess, we've already had a few of those so it's someone else's poor baby's turn.
Kean's new roommate was born a week after Kean (but 3 months early). She was only 2 something pounds and was doing great until this week. She now has pneumonia and is in critical condition. They put her in the same room with Kean-- since he is so stable-- the nurse won't be overwhelmed. The little girl baby was just adopted by a couple from Utah-- the birth parents are teenagers (shocking) and the adopted mom teaches at BYU, the father is getting his master's (in ballroom dance). I feel for them. And it made me appreciate "my" rollercoaster.
Dr. Snyder (the head of NICU) announced today that as of Friday night at midnight, the NICU will be closed and off limits to anyone under 18. Evidently, there are several children already hospitalized with H1N1-- so they are being proactive and shutting out all the little germ factories. Little Miss Smarty Pants (that would be me) piped up to ask him what that means to all the 14 and 15 year old parents I keep seeing in the NICU. I guess there will be exceptions. He also said in the next week or two, they expect to close it off to everyone except parents. That means no grandparents, aunts, uncles -- anyone and no exceptions in that area. Crazy times!
So I came home to Greer getting off the bus (after falling into a dead sleep on the bus) with a fever of 100.3 and complaining of aching everywhere. Ug. No, double Ug. The NICU doc told me if she isn't better tomorrow morning, I need to stay home and have her tested for the Swine Flu. Oh, isn't life fun?
The NICU doctor I just mentioned, called the house tonight to tell me they'd just done the math and Kean has taken 80 percent of his feedings by bottle yesterday and today-- a major improvement and she thinks we should try rooming in -- in the next day or two. WHAT???? Just the day before yesterday they cancelled my rooming in and said 2 more weeks. So, ladies and gentlemen, I don't know what to expect in the next few days. Would I sound paranoid to say there is a conspiracy to drive me insane? I'm not even getting my hopes up-- I'm just numb. I'll believe it all when it's happening.

An Up Day On The Ol' Roller Coaster

I'm sure I've had many of you worried about me after last night's post. First off, drugs are wonderful. My breast infection feels a bit better, thankfully. And I had a good day at the hospital. The blood and urine test results came back-- all negative. These were the tests the Pediatric Oncologist ordered to further test that mass in Kean's liver. All the weird stuff they were worried about can now hopefully be ruled out. So we are back to monitoring the growth and hoping it will dissolve or not cause any problems.
Kean also tried his darnedest to progress today. With a lot of patience and some hard work, he was able to take both of his feedings while I was there from a bottle. That's the best he's ever done. So maybe things are starting to click for him. Or maybe, just maybe he's trying to thumb his nose at the docs for cancelling our big "rooming in" session. Speaking of his nose, today was the third day he pulled out his NG (feeding tube)-- what a little troublemaker. My sweet friend, Kim took Reese all day today-- then showed up tonight to drop her off bearing flowers. Thank you all for all you do to keep my spirits lifted.
Tonight, my little Beehives (the 12 and 13 year old girls I worked with in my church BBR (before bed rest) held Sister Barker Night.

They put a crown on my head, a boa around my neck and treated me like a princess all night. We had yummy treats and played a few hilarious games. One of the games they played had them test their memory. A tray filled with baby paraphernalia was brought into the room for a few seconds and then they had to list as many items as they could remember. They also played baby pictionary. Aren't they the most beautiful group of girls? They are all darling and it was so good to be with them again. How can someone not be surrounded by these bubbly, upbeat, energized young women and not feel better about life? It was just what I needed. Plus, they made me a cute, cuddly baby blanket for Kean. He has a lot of babysitters to choose from!

Screeching Brakes

Well, it's Tuesday night and I'm writing this instead of being with Kean-- so yes, you guessed it-- our sleepover was cancelled. The head of the NICU, Dr. Scott Snyder, who is very cool, called me about an hour before I left for the hospital today to tell me he doesn't think Kean is ready for the "rooming in". Combining a Premie with Down Syndrome, he says he's just not ready to take the feeding tube out and it would be setting all of us up for a big disappointment. He feels with his situation, that we need to not push him to sink or swim until he is at least another 2 to 3 weeks older. These little guys don't have the muscle tone and coordination to pull it off. UUUUUUGGGGGGGG. I fought back my tears and agreed with him. He went into much more depth, but you get the gist of it. I am just so tired of this life I have right now. And I feel bad for having to continuously rely on so many of you to keep the rest of our life functioning.
To make matters even more dismal, I have a full blown breast infection going-- my doctor called in a prescription for me tonight, so hopefully I'll soon quit threatening to cut my breasts off. When I got to Albertsons, I couldn't find my insurance card. The pharmacy I usually go to was closed. So I burst into tears. I'm certain the Pharmacist at Albertsons was secretly thinking I need to be on anti- depressants as well!! While I'm at it, can I just say I hate insurance companies, I hate paperwork, I hate hospital bills and I really hate breast infections.
Maybe I'm wrong, but I thought the Lord wasn't supposed to give us more trials than we can handle.
Please remind me that I will survive this.
I'm off to pump. My toes are already curling in anticipation of the pain.

Whoa... I'm so tired and he's not even home yet!

The girls are in bed and I'm headed in that direction-- after I pump. Ug. Seems like that's all I ever do. I had a long, long day at the hospital today. We got in lots of feeding practice for the big sleepover tomorrow night and of course lots of cuddling.
Kean is now up to 6 lbs and 1 ounce. He's a growing boy, eh? I can't believe he's been in there 36 days and has gained almost 2 pounds.
Byron and I passed our infant CPR class. I was awfully tired, but Byron made it fun (of course)! I'm just glad to be able to check that off the list.
My friend, Stacy Hoffman fed the girls dinner tonight and even got their homework done. What a blessing. All I had to do was get them to bed. Thanks also to Angie and Kim for taking Reese today. Goodnight. I'll let you know how the sleepover goes on Wednesday.

Sunday, Sunday (Day 35 in NICU)

I squeaked in an hour of church this morning before heading to the hospital. It feels so good to have some normalcy. Kean was darling as ever today. Sleepy, as usual, though.
The Patient Care Coordinator who has been wonderful, gave me a baby gift today from the hospital (a blanket and three little sleepers). I asked her if this means I'm really going to get to leave and this is my farewell gift-- she said yes... it's an incentive for Kean to get going. So the light at the end of the tunnel is getting a bit brighter.
Today marks 5 WEEKS in Intensive Care. I have to say, this has gone by much faster than the counting the painted leaves on the ceiling days that I was in Ante-Partum.

Day 34 in NICU

When I got into the hospital today, Kean had a band aid across his head. They took a bunch of blood out of the vein in his forehead to run some further tests on that mass in his liver. It must be exhausting for him to have even a bit of blood taken-- 'cause he was pretty snoozy today.
They took him off his oxygen yesterday and he's done really well until this afternoon. He had a lot of desaturations. So I'm hoping its just because he was sleepy and not a little set back. I'm feeling so positive that the end to NICU is coming.
I also had a long talk with the head doctor for the NICU about when to get Kean circumcised and about modifying his immunizations a bit.
On the home front, we had Grandpa Bodily up for dinner (leftovers from the yummy dinner Kim Leach brought in last night) and then the three girls put on a show-- complete with teaching Grandpa and I dance moves a' la Hannah Montana. Thankfully, there were no hidden cameras in our living room. Can we say "blackmail"?

Still Moving Forward...

So maybe I'd better clarify a few things. The car seat test-- is not a test to see if we know how to buckle the little one in... it's actually a test where they will put Kean in the car seat and monitor him for an hour to see if he can handle being in an upright position. When you are dealing with a Premie... the change in position and gravity on the neck will sometimes impede their Oxygen flow.
As for rooming in... yes, I've had enough of St. Luke's. In fact, I'm still waiting for them to name a wing after me (ha, ha). But they have three rooms in the NICU unit that are supposedly very much like a hotel room (TV, DVD, full size bed, fridge, alarm clock etc.). The nurses will weigh Kean before we "room in" and then weigh him afterwords. Hopefully, hopefully, hopefully, he will gain weight and not lose it. It's all about seeing if he will thrive in my care alone. So kick in those prayers on Tuesday, Ladies and Gentlemen.
We did have a good day today. No crises. Kean is getting more and more awake and trying so darn hard to breast feed. His Down's is getting in the way of that a bit. When he latches on, he pulls his tongue back a tad and about kills me. So we try and try again. It will just take some more time. But he's doing okay. I, however, am about ready to slice my breasts off. What we women go through for these little babies.

Let there be light at the end of the tunnel...

I have some potentially huge news to report today. The NICU doctor talked with me this afternoon about an exit strategy for Kean. Yup, you read that right... a plan to get him home!!!
The doc said they don't like to send babies home on a feeding tube and oxygen but they do it sometimes and find the babies do better at home. So here's our plan. They will see how he does this weekend without oxygen-- he's on the lowest of flow-- so keep your fingers crossed. Then Monday night, Byron and I are supposed to take an Infant CPR class (required to take him home). Tuesday, they want me to spend the night at the hospital. They are going to take his feeding tube out and see how he does with just me! I'll room in - in a room in the Intensive Care unit and wake up every three hours to feed him. Kean will be on monitors that the nurses will keep track of from a desk outside the room. So here's our big first test. I'm very excited and hopeful and trying, oh trying not to get my hopes too high. We have to pass a car seat test and a few other hurdles... but this is big. I might get him home in this lifetime after all.

The Doctor's Update (and a little bonus)

Dr. Chang (the Pediatric Oncologist) just called the house after examining Kean. She says there is a long list of what the mass could be-- but she suspects its a "fat collection" and says it is highly unlikely that it is malignant.
There are some very rare tumors that are found on the liver (less than 1%) that are problematic, so she wants to watch this closely. But it looks like we've dodged the bullet for now. She only wants to do a series of urine and blood tests to rule out what is known as a Teratoma (spelling?)-- that's a mass that grows teeth and other stuff in it-- that would have to be removed. She suspects and hopes it is what is called a Lypoma (benign fat tissues)-- but she says this is a pretty unusual place for a Lypoma. So she wants to do an Ultrasound in 3 months and another MRI in 6 months. Dr. Chang says to biopsy or take the tumor out would be too big of a surgery for such a little guy-- so she just wants to watch it. I'm okay with that. A surgery would just prolong the NICU stay-- and I WANT HIM HOME!!! Am I sounding desperate yet?
One final and very positive note: Dr. Chang said other than the Down's, Kean seems to be in good health for being a premie. So we continue moving forward...

Oh, I also just HAD to share this with you. My dear, darling friend Les Rose (one of my favorite photojournalists from my days at CBS) wrote this poem for me yesterday. What makes it even funnier... is that he sent the first half out and then my other wonderful friend, Dave Wertheimer (who was my photojournalist from my days in North Carolina) commented that Les had not covered the Jewish faith-- hence the second half of the poem. I posted it, because I want to keep it forever! Enjoy-- and I hope it makes you smile, like it did me!

"You know we really adore you and your whole darn gang.
We'd give you our hearts and soul
or even a cool Mustang.
Hang in there pal, I know it can really stink...
So take those hugs from your girls that are pretty in pink.
So many are praying for ya'll...folks cannot resist,
We even got a few on your fence that swing atheist.
Methodists, Lutherns and Episcopals are praying too...
The wagons are circled so you won't feel blue.
I will come and visit when you need a laugh and a smile,
Just pick up the phone and Delta I will dial!

I now have so much guilt,more intense than I have recently felt.
For not directly including my friends with the Star
Nor have I included Buddah, Islam or Secular.
Forgive me, but I have missed some and I regret it...
But we are all cheering on Ms. Lonni Leavitt!"

A Half Sigh of Relief

Byron and I met with the Doctor first thing this morning and the test results show the growth is benign. Big phew! He said they don't know if it is fatty tissue or blood vessels but it is quite rare-- in babies and in adults. So now, his case has been passed over to a Pediatric Oncologist and a Pediatric Hematologist to study. They need to figure out what caused it, what it is exactly, and then if it is impeding the function of the liver. And finally, what to do about it-- test further, watch it closely or take it out. I'm betting they go for more tests-- isn't that what doctors do?
So we are still very much in limbo. On the very bright side (and this bodes well for the big mass--- at least I think so) the other spots that they suspected might be calcium deposits-- they couldn't find any in the MRI. So we are just dealing with the growth in his liver. I've been told to expect a phone call from one of the specialists tonight (I stayed as late at the hospital as I dared but had to get home for the bus). So hopefully, I'll have something new to report.
Thanks everyone again for your prayers and support. By the way, two hospital social workers and the hospital chaplain all stopped by to "chat" with me. I think they were worried I was close to snapping. I'm happy to report, I'm still only somewhat mental.

Kean's a Trooper

I won't bury the lead. I have no test results to report. They won't be complete until Wednesday morning. But I do have a few pictures. Here's one of my very favorite nurses (on the left) Chris taking Kean down to have his MRI. The other lady is the Respiratory Therapist. And my camera is a bit slow-- so I only got the back of the Neo-natalogist, Dr. Harper as they took him in for the MRI. Kean did great. They had put an IV in his foot-- and ended up only using it for the dye. He did not get fully sedated-- they just put something in his mouth to make him happy. But he was still quite tuckered out after his big day. Reese had a big day today too. Her first day of Pre-school and boy was she ready. We dropped her off about 20 minutes early. So lucky Reese, had some one on one time with her cute teacher, Mrs. Douglas. (Reese has already called her "Uncle Douglas" a few times-- that's my brother's name).My pics are a bit backwards, but here she is going up to the door. Gotta love the princess backpack.

I snapped this one in front of our house before we left for school.

And I thought you'd enjoy this... when I came home from the hospital yesterday, the girls had built a "Leprechaun trap". I'll let you know if it's successful.

4 Weeks in NICU

Four weeks in Intensive Care has a bright side-- it means today Kean is four weeks old. Wow... even though each day feels like an eternity, I can't believe he is already 4 weeks. My exhausted mind must be playing tricks on me.
I actually had a really nice day today. Pam, the nurse who felt like he should be named Nathan, was our nurse again. I love her. Plus, my dear friend, Kim Leach came up and spent the day with me. So I was surrounded by pure kindness today. Kean was as cute as ever. And we seemed to make some decent progress today on his "breast feeding therapy".
Tonight, we (my family at home) went over to Sally and Jonathan's house for a Labor Day BBQ. It was so fun and very relaxing. Just what I think we all needed.
Tomorrow, Reese has her first day of Preschool. Excited doesn't begin to capture it.
Oh, the word I couldn't remember last night: hemangeanoma (I'm sure I butchered the spelling). That's what we are hoping for in the ultrasound tomorrow. It's a mass or cluster of blood vessels that the doctors will just watch and hope it will eventually dissolve on its own.

I've settled down...

I'm feeling a lot better today (and not so bitter). Your sweet comments and emails have helped tons. Plus, I went to church today for a little bit. Since it was Fast and Testimony day, I thought it would be a perfect day for me to get up and express my gratitude to the Lord-- but it was a no go. I was emotional through everybody else's testimonies-- and knew I'd not be able to blubber out one coherent word if I got up to the pulpit. So hopefully, that day will come sometime.
I spent a good chunk of the day in the NICU with Kean. When I got there, he had a bag taped around his "manhood" to capture his urine for testing. It was pretty clever and less intrusive than a catheter. But he sure didn't like it when it came time to gently pull the tape off. Poor little guy. He got his third bath -- and that seemed to calm him.
I talked to Dr. Meyers (the NICU doctor I have the best relationship with-- he went to Duke-- that should explain it). He has studied the ultrasound of Kean's liver and told me today he thinks everything should be okay. Of course, we need to wait for the MRI on Tuesday-- but he thinks the mass is a cluster of blood vessels that may just absorb as he grows. They'll just have to watch it closely. There are a few other little spots that he thinks may be smaller masses or calcification deposits. If they are calcification deposits-- they may be from an infection in the womb and therefore, he would have them scan the brain and other tissues for similar deposits. But Dr. Meyers is leaning against that and towards the blood vessels (there is some medical term he was using-- but I can't remember it for the life of me). So after talking to him today, I feel much, much calmer. All I could ask him is where were you yesterday???

Can I just quit this hospital thing?

Please humour me while I whine. Actually, I'm feeling angry today. I feel like screaming "how much can we be expected to take?"! Today, we found out that shadow or spot on Kean's liver is a tumor, a pretty decent sized mass. Since it's a holiday weekend, we will have to wait until Tuesday for all the specialists to be in for further testing. Kean will be given a sedative, put under and given an MRI. A Pediatric Oncologist (Cancer-- yes the big, ugly C word) and a Pediatric Hematologist (Blood specialist, I think) will be overseeing the procedure. So I'm worried about putting the little peanut under and also, of course, what the results will show. I tell you, I cannot, cannot, cannot handle watching a child go through cancer. It will be too much. When we found out he had Down Syndrome, I consoled and comforted myself by saying, I can handle this-- thankfully, it's not Cancer. I couldn't handle that. So just know, if it is, I might as well be institutionalized. I'm done.
They say to expect to take two steps forward and one step back in the NICU, but today feels like we went way, way back. What a lousy day for my mom to leave town and go home, eh? I'm back on the tracks of my emotional train wreck.
We also had a lousy day in the breast feeding department. Kean is latching on and sucking (he did 20 minutes today). But a pre and post weighing showed he's only getting a small amount of milk. The Lactation specialist and Occupational Therapist both believe he is "chomping" like a baby does to get milk out of a bottle instead of drawing out and sucking as he should on a breast. So we will start the training back at square one, change the type of bottle he's using when I'm not there (he still has his feeding tube for most of his eating) and see if we can't salvage this whole breast feeding operation. At least now I know why my breasts have been so horrifically sore.
So life totally sucks today. Sorry for the use of the word sucks so close in proximity to the update on breast feeding.

One Crazy Day in the NICU

Wow. It's a good thing I had my friends Pam and Sally as my support group in the Intensive Care Unit today. When I got to the hospital this morning, Kean was in the middle of an X-Ray. You know how I told you he's been struggling with the breathing while eating thing... well, last night he gained 100 grams. That's just not right. It's way too much. So this morning they ran the X-Ray of his chest. It shows he has wet lungs or fluid in his lungs. So he's now on a diuretic (spelling?) to help him pee that out. They also did an EKG on his heart again. It showed the one flap that was open at birth has closed on its own (Yippee) and that everything else looks pretty good. However, while examing his heart, they saw a shadow or spot on his liver. So as I write this, they are doing some tests on his liver. Oh brother, does this ever end? The doctor did order a small, but constant flow of Oxygen placed thru his nose and since that's been on, he did much better breast feeding and bottle feeding after I left-- no desaturations. I whined to the Nurse Practitioner today that I'm never going to get him home at this rate-- and she told me they let babies go home with portable Oxygen tanks-- and this might actually speed things up. The Oxygen hopefully will solve the big desaturation problem and give him more energy to stay awake and eat-- rather than use his energy to fight everything else going on. So we will see....
My mom (Saint Dee) is leaving us. I'm trying not to freak out. The poor woman has been here for a couple of months watching my kids and trying to stave off exhaustion. She's headed back to Vegas tomorrow for some much deserved normalcy-- and to take care of my dad. He's been baching it forever. She's kept my kids feeling loved, kept my house running, and has found the energy to pick mountains of berries from my garden and make bottles and bottles of homemade jam. Jars of jam-- made for me to give away to the amazing nurses and staff members who took care of me for the 11 weeks in the hospital. If I could only be like her when I grow up...

A Big Day For Baby Kean

Kean must have felt like a celebrity today. He had a steady stream of adoring visitors. This is my mom's sister, my Aunt RoEen (who is like my second mother) holding him. My Aunts' Daleen and Beverly also came in with my mom and Reese. He was very awake today to take in all the adoration. Smart boy. And this is "Grandma the Great"-- my grandmother and Kean's great grandma. Today is her 91st birthday and much of the family came in to help her celebrate. That's my Aunt KLynn on the right. In case you don't know, my mom is the oldest of 9 girls-- 13 children in all. And are you sitting down? I'm one of 86 grandchildren and Kean is great grandchild number 259-- yes, it's not a typo, 259.
My Grandma is one of the great wonders of the world. She can run circles around me (even when I'm healthy and not coming off 11 weeks of bed rest). If you know my mom-- you then know how my Grandma is... Isn't she a cutie? I mentioned that Reese and my mom came in yesterday to help give Kean his second bath. Reese never stopped smiling or singing to him.

Reese wore her yellow Minnie Mouse heels with the red polka dot bows. Nurses from far and wide dropped by the room to check them and her out. How did my children become so dang social?

Kean, by the way, LOVES his baths. He just kicks back and relaxes like he's at some top spa.

I didn't lie. There's not a single picture where Reese is not smiling huge.

Reese had so much fun bathing Kean that she wanted to do it again today. His baths are scheduled every three days. So she'll have to come up for the next one.

On the medical/progress front-- we had his best day yet for nursing. He latched on for 15 minutes and then another 5 and sucked vigorously. Kean is rooting around and seems to get the breast routine-- he's latching right on with less and less work. So he will be a "breast man" before this is all said and done. He's awake more and more each day. He's still forgetting to always breathe (not as bad as yesterday though)... but the nurse did have to give him a little oxygen boost today. The Occupational Therapist worked with him for a while yesterday and switched the type of bottle they've been using on him-- and that seemed to help. So hopefully, we're inching closer to getting him home in my lifetime.

Day 23 in NICU (I'm to tired to come up with snappy titles)

Okay... I'm truly, madly, 100 percent exhausted. Reese and my mom came up to the hospital today to help me give Kean his 2nd bath-- and my favorite nurse Dan (remember the breast guy?) took a ton of pictures-- I'm guessing some are pretty darn cute. But you'll have to wait until tomorrow night. I just can't.
I brought Reese home and even got a little nap. But it wasn't enough. I'm now helping Holland with homework and trying to get the three sweaty girls in a bath. Holland's primary class had an activity at the park. It was fun-- but I certainly overdid it. So since I'm about to start drooling on myself... I'm off to bed shortly. At least until pumping time in 3 hours.
Kean did okay today. Pulled out his feeding tube again. Lots of oxygen issues with him forgetting to breathe while eating. So just an okay day. Reese, on the other hand, dazzled the entire nursing staff by singing lots of cute songs. Oy, what a character.

Day 22 in NICU

Pam picked me up this morning and went with me to the hospital. Kean decided to show off and latched on for a whopping 12 minutes. Of course, when Elly came in during her lunch break and Kean's second feeding-- he was to whipped to do anything. Ah, the ups and downs of NICU. The doctor told me to plan on another few weeks to a month in the hospital. I am so done with that place. Luckily, I have such good friends who come visit me and my nurse buddies from my days in Ante-Partum to keep me on track. By the way, I had washed and taken in a bunch of new little outfits for Kean to wear (before he outgrows everything). When I got in this morning, there was the dirty clothes bag-- filled with four of the five outfits I had brought in. The nurse gave him an enema last night and boy did it work! All those outfits have the proof on them.
Remember, the baby girl who was sharing the room with Kean (who never had any visitors)? I finally met her mom yesterday. The baby's dad is in another hospital getting treatment for cancer. When I got there this morning, the baby was gone-- moved to the same hospital as her dad. Sad story. Guess we all should count our blessings.