...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

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Sunday, May 30, 2010

Bath Time

Princess does not approve of my bathing skills, so she does it over again herself.
"Did you remember to get between those little toes?"
Jack laughs when Princess licks his head, but this photo was edited belatedly when I realized there was a little too much.
"That stubborn cow lick just won't lay flat!"
"Now for this side..."
"Gotta get behind your ears..."
"...now this one. Hey! I found a snack behind this one!"
"Did I miss any spots?"
All clean!
Silly boy
"What do you mean I'm supposed to lick her now?"
Jack giggles over the snort this produces!

Saturday, May 29, 2010

I've Been Remiss...

I've been remiss in my picture posting duties. So tonight I thought I'd post some from the last week. And then fatigue set in, so I'll do it tomorrow! And if tomorrow comes and goes and there are no pictures...well then I lied. Sorry. I'll give it my best! Promise!

Here are a few more from this week...okay...I gotta clean up some files before I post...stay tuned to this station for your local news!

Okay, I did it! Please see Bumbo, Is He Kissing Me? It Still Fits, I Spy, 28 Weeks, He's Holding His Bottle and New Swing Seat Position.

More tomorrow!

...and a side order of thumb, please!

This is Will's newest trick!He starts off holding the bottle with one hand...
then works his hand down the bottle...
until he gets to his mouth and he pops that thumb right in there!
By midway through each meal he no longer bothers with the pretense of holding the bottle...I take his thumb out. He puts it back in. I take it out. He puts it back in! After a few rounds of this, I just hold his arm until I forget, and "POP!" back in with the thumb!


Bumbos kinda give me the creeps.Not sure why. I think it's because I first saw one while I was still waiting for Will's arrival, and the only time I ever saw a baby sitting in a Bumbo it was a baby with Down syndrome, and maybe I was still in a little bit of denial......you know, that bargaining stage, "Dear God, Make my baby have only 46 chromosomes and I promise, I promise, I will never buy a Bumbo." Didn't work. But that's fine. We adore our Jax-Snax' extra genes, and well, I finally see the value in this funky little seat. It took forever to find one that wasn't pink!
The Snack isn't too impressed.
He does find the pommel to be a suitable chewy...
...as well as the sides.
I do believe I'll be going back to the store to buy the play tray...
so it can serve the intended purpose of helping Jack stay upright and work on his core. Silly boy!

Friday, May 28, 2010

Holding His Bottle

No Jack's Grandma did not come to visit......that's me! He isn't really holding it in place, but he does hang on to it now. He's gotten really good at knocking it out of his mouth! Then he hollers and I put it back and we start all over again.

Thursday, May 27, 2010

28 Weeks

He's growing right along
I can't describe how much I love this boy!And I will be very happy when the needle marks heal from his little feets.

Wednesday, May 26, 2010

I Spy...

My friend Beth posted pictures of her lived in computer area and one of her husband's very pristine area. So...I sent her a consoling picture of mine! I was going for a dirtier version of Strip Poker. Waaaaay dirtier!I would have been content to play Eye Spy, but she upped the ante...The Kitchen! I think she folded when I raised with "Do you wanna talk about bathrooms?"

Is He Kissing Me?

When Will was about four months old I thought that maybe, just maybe, he was trying to give me his own version of kisses. Every time I gave him a bunch of kisses on his mouth or cheeks, he would smile shyly, open his mouth wide, and then dive bomb my mouth with his face! This is chin gobbling - not to be confused with kissing, but Jack giggles as soon as my lips leave his chin!

What he started doing this week most certainly is his way of kissing! He gets all grinny, and aims his mouth to mine and starts heading my way, and once contact is made, he starts doing this quiet breathy little giggling while 'rooting' his mouth onto mine, while also pulling toward himself whatever part of me are in his hands...my shirt, my hair, my cheeks, the tender skin of my neck...

It's purely sweet! He has such a ball with this game, and before he's done with each kiss, his mouth is open wide and he's giggling out loud!

Clearly, I need a date with Miss Clairol! And a manicure, a pedicure, a haircut, a full body massage...there's a reason why Mom's always behind the camera! I am well aware of my gobbleneckulitis in this last picture - stop looking at me and look at the baby!!!!

Tuesday, May 25, 2010

New Swing Seat Position

My Little Duckling has been spending much of the time in his swing trying to sit forward by hunching his shoulders. I put the seat in a more upright position so he could reach his toy tray more easily. Turns out he just wants to be closer to Eeyore! He likes hollering at Eeyore as he goes round and round!Here he is yelling at Piglet. See the gap between his shoulders and the seat back? I'm not not sure if this is strengthening his core to hold this position or if it's allowing his neck to be lazy...his head is kinda wedged in there!
And now he's giving Eeyore 'what for!' He never takes much notice of Pooh...wonder why?
And just when I started thinking that this is not doing his neck strength any good at all...
...he sits straight up to bust out laughing! Maybe Pooh said something amusing!

Monday, May 24, 2010

Just a Thought...

Two things used to really terrify me. Pit Bulls and having a child with disabilities different abilities. Now I have three of each! Needless to say, it's not at all what I thought it would be like. Both have turned out to be beautiful blessings to our lives and each others'. I also have an abiding fear of being burned. I hope this isn't a trend...

I'm going to add about 52,000 things to my list of things that terrify me. You know, just to exponentially dilute the likelihood that I will ever catch on fire. It's just a thought...

Leukemia Drive Speech

My Miss Peach was thrilled to her toes that her 5th grade teacher said she could do a motivational speech for her class to help boost efforts for the leukemia drive! And while I was researching statistics for childhood leukemia, information I hope to never need again, I was reminded of all the nasty and frightening medical crap out there that I read after getting our Ds diagnosis, that tells us nothing about the wonderful, loving, charming and worthy little beings we are carrying just under our hearts. But I did find this one little nugget:

•Behavior: Natural spontaneity, genuine warmth, cheerful, gentleness, patience, and tolerance are characteristics.

The Girlie rocked her speech! My shy and timid little flower is blooming, and her brilliance is intoxicating! She spoke clearly and pronounced big words like lymphocytic and myelogenous without a hitch! Here is part of her speech:

Leukemia is a cancer of the blood and bone marrow. It means that there are too many blood cells. The blood cells are immature and unable to do what blood cells are supposed to do. They are useless.

There are four major kinds of leukemia
acute lymphocytic leukemia
chronic lymphocytic leukemia
acute myelogenous leukemia and
chronic myelogenous leukemia.

Chronic leukemia means the person gets sick slowly. Acute leukemia means the person gets really sick, really fast. The most common kind of leukemia in children is acute lymphocytic leukemia and about 5,760 children will be diagnosed with it this year.

Anyone can get leukemia. Slightly more boys will get it than girls. The statistics by race are very confusing because first it says that white people are more likely to get it. Then it says that African American people are more likely to get and then it says Hispanic people are more likely to get it. The best my Mom was able to determine is that it strikes all races.

In 1960, of all people with leukemia, only about 14 % got better. In 2005, that number has increased to over 50%! In some kinds of leukemia, the childhood survival rate is over 90%. The money that you are all collecting helps fund research to make these grown ups and children get better. That's why it's so important!

My Mom brought my little brother here today because he has Down syndrome. Babies and children with Down syndrome are 15–20% more likely to get leukemia before they turn 3 years old. This means that one out of every 95 babies with Down syndrome will get leukemia. Only 1 in 2000 babies without Down syndrome will get leukemia.

Down syndrome means that Jack has 3 copies of the 21st chromosome. You and I and Mrs G*** have only two copies. Scientists are finding out that the genetic material on the 21st chromosome is at least partly responsible for how the bone marrow in our bodies makes our blood cells. It is currently being said that studying babies with Down syndrome will ultimately help scientists find answers about how to help all children and grown ups with leukemia.

Without us collecting money to donate, a smaller percent of people will get better. So lets all keep doing our best and see how much money we can raise to help find a cure!

Once she was finished speaking, her awesome teacher invited the students to ask questions. I was so impressed with these wonderful children and their thoughtful questions! And it didn't hurt that they all were about Jack, who sat happily on my lap smiling at everyone! The first question was of course, how do you get Down syndrome? I gave them the quick answer that science doesn't really know yet, but it happens when three copies of the 21st chromosome are made instead of just two. These kids are wiser than I was at 11 years old. The second question was is there a test to find out if the baby has Down syndrome before it's born? Yes there is! The doctor can do a special test to find out if the unborn baby will have Down syndrome. When did you find out? About four months before he was born. Is it dangerous for the baby to have Down syndrome? I said that only about 25% of babies with Down syndrome will live until they are born. This clearly sparked alarm because one little boy blurted out with scared look Well, what about after the baby is born, is it okay then? I spoke of a few of the health problems children with Down syndrome can have, but that happily, Jack is well and healthy! I also was quick to say that most of the babies who have many of the health problems can either have surgery to correct the problem, or take medicine to treat it. One little boy said, "I don't really have a question. It's more like a comment. Jack is such a cute little baby and I'm afraid that when he comes to school some kids could be mean to him or pick on him." So....think fast, Mom! I leaned into this thoughtful boy and asked, "Have you ever been picked on?" Of course he said yes. So I asked the class at large, "Anyone else? Have you ever been picked on? How about you? You? You? Yep. Me too. It happens to every one and it will happen to Jack, too. All we can really do about that is to prepare him for what to do when it happens." Another little guy asked if there were things about Down syndrome that you can see. I asked them all to look at their hands and tell me how many lines they had on each palm. There was much scraping of chairs when I invited them to come see Jack's palms. The first little girl to see Jack's hands said "Hey! He only has one line!" We talked about some of the other characteristics of Ds. Smaller ears, upward tilted eyes, a flatter bridge to the nose. They were really intrigued that while Jack has all three bones in both pinkie fingers, his right pinkie appears to have only one flexion crease. It was particularly interesting to them to know that people with Ds may have the single Simian line in only one palm, or neither! While it turned out to be a decidedly Down syndrome Q&A, the last little boy asked, "Does that mean that Jack has a 15-20% bigger chance of getting leukemia?" Yes it does, but with everyone helping to raise money for leukemia research, maybe they will find a permanent cure some time very soon! Then he said, "Well. I hope he's not the 1 in 95," looking sad. Me too, I say. Then I looked back at this boy, this very, very thin boy. This very, very, very pale little boy. With big brown inquisitive eyes and decidedly unruly curly brown hair. I wonder what he's seen in life.

My Girl was so, so very pleased that she'd stood up and addressed her class "without messing up once! And guess what else? Mrs. G*** gave me extra science points!" She stood next to Jack and I with such a proud and happy smile. She said later that the best part was, "When Jack got to come and meet my class. They all got to see him!" She also enjoyed calling on which kids with their hands waving in the air got to ask their question! She ROCKS!

It was interesting for me to see from the vantage point of being surrounded in a semi-circle of kids, that while all the kids were looking at Jack, most of the boys looked at me while I answered questions. The girls nodded their heads, but nearly all of them continued to look at Jack while I spoke. Hands down the boys asked more questions, but by the middle of our presentation, nearly every girl had leaned forward toward Jack. Chromosomes. X and Y. They certainly have their own roles!

It must be my week to teach. Between the hospital nursing students, and even some of the licensed RN's, and The Girlie's fun classroom experience, I have spewed Ds facts I didn't know I knew! Next up was The Pod Pie's IEP just 15 minutes after My Girl's wonderful presentation. I was holding Will in my arms over my shoulder and had asked The Pod's SLP if she had a network base I could draw from. I said that we were having trouble finding an SLP in this area for "this one" and patted Will's hiney. She was surprised that he'd need one and said, "Already? Why?" I said, "Oh, he has Down syndrome," and I turned him around so she could see his sweet face. And her one and only comment was, "Oh those babies are always so happy!" with the gushy look on her face. And I spoke right up and said, "Oh, I beg to differ! He is a happy, good natured little baby, but he cries just like any one else if he's hungry or tired or has a tummy ache!" I told her about a blog post where I'd addressed this very misconception about kids with Ds being perpetually happy, complete with a picture of a red-faced Willie, screaming his lungs out! There were laughs all around and she ended with saying, "Oh. I didn't realize that." What 'that' was I don't know, so I followed up with, "He's pretty much just like any other baby, but he wears his chromosomes on the outside where people can see them."

Things That Make You Go Hmmmm, Part II

Just got a call from the Pharmacy. Apparently the aerochamber for Jack's MDI was approved. They have to order it and it should arrive tomorrow. "Do you need the mask?" Yes, we do, please. "What have you been using?" Ummmm...a gerri-rigged nipple cut off to fit his nose and timed "just right!" "Well, the insurance might not cover the mask, but we won't know if it even comes with a mask until it arrives. Do you want to pay for a mask if it doesn't have one attached?" Yes, please. "Okay, so we should order it if the one that comes doesn't have a mask?" Yes, please. And YEAH again that they deliver!

Saturday, May 22, 2010

Things That Make You Go "HMMMM"

Okay so I posted the picture of Jack's latest body art, also known as "ink," his souvenir from the midnight dash through darkened streets the the Emergency Department at our local hospital. That was late Wednesday/early Thursday. I dropped off the many scripts we'd acquired by that time on Thursday evening. Our pharmacy delivers, which is waaay cool, especially since we are way out on the outskirts of town. Seriously...there's farm land within shouting distance. We can hear sheep at night when the 4-H club sends their sheep to graze! It's cool. But I digress...

So all day Friday I was on the phone back and forth with the pharmacy, due to the way The Olders new doctor (not!) wrote their refills. The delivery guy was here three times that day, delivering stuff as it got approved for filling by the insurance. At some point during the day, because thanks to The Beloved, I'd actually gotten a few hours sleep, I started wondering, "What in the heck are we supposed to do with the Albuterol MDI the ER doc prescribed for Jack?" My friend Beth echoed the same thought. I've never seen an MDI that is baby-sized, nor any six month old baby, Ds or not, who can take instructions on how to use one. I assumed the pharmacy would help me figure it out. Not! The pharmacy informed me that neither the MDI nor the Spacer were covered by our health plan. I did find out during this phone call that the mouth end of the Spacer is exactly shaped and sized like the MDI, so that the cap from the MDI can be placed conveniently onto the Spacer. For those of you fortunate enough to not know what an MDI is, it means Metered Dose Inhaler. You've probably seen someone out in your travels exhale deeply and then breath into a plastic device with a metal cylinder attached. That's an MDI.

So, this news forced The Dear Daddy and I to get creative. Certainly we are willing to pay the cash for the MDI and the equipment, but toward what end if Jack can't use it? And you know, since Jack had been wheeze-free since our trip to the ER, he promptly developed wheezes not ten minutes after I hung up with the pharmacy. Now I am no stranger to MDI's. I have one sitting on my desk. Same drug. Slightly lower dose than was prescribed for Jack. Not sure why adults get less and babies more. Probably to compensate for drug loss while it travels through the Spacer. I found out from the pharmacy gal that the health plan we just switched from in May and are going back to in June would have paid for all of that stuff, as well as a nebulizer set up designed for babies.

So, with wheezes in hand, errr...on his lap, The Dear Daddy held Jack upright while we timed his inhalations and I tried to depress the cylinder of my MDI in accordance. Jack was a little surprised by the cool burst of "PUFF" shooting up his nostrils, but it worked! Jack doesn't breath through his mouth, so those teensy little nostrils were just going to have to do! It took about 6 depressions to get the prescribed 2 into Jack.

And you can imagine my surprise when this arrived with the last of the script refills for The Middle Little:Apparently the insurance decided to cover the MDI but not the Spacer. That will probably arrive Monday. The Coke can is for size ratio. This is supposed to fit into Jack's mouth for him to inhale the medication.

The next picture is after The Dear Daddy got creative with the fast flow nipples we are no longer using. The blue MDI is shown with the finished product. I'll be able to better direct the flow of the puff towards his nostrils when he inhales, and it turns out to work quite well held about half an inch from Jack's mouth during the only time he does mouth breath - when he cries.
My Poor Little Duck doesn't feel good at all, but at least now he's breathing a little easier.

Well Then...

"All I really need is my thumb!"
What I thought started last Sunday, in retrospect probably started last Saturday. A week ago. Since SLP has yet to get started, and since Jack's tongue spends more and more time outside of his mouth every day...and since Anna from EI pointed out that Jack's suck is so weak there is no resistance to removing the bottle from his mouth...well I decided to start my own form of oral motor therapy, you know, just until something formal could be put in place. Was that the Mother of all run-on sentences? No, not really. I'm very capable of doing much worse!

So...about three weeks ago I got serious about rooting around inside Jack's mouth several times each day with my finger. He thinks this is the bomb! You know those little finger toothbrushes you use for toddlers with the super soft bristles on one side and the raised bumps on the other? He thinks that's a gas as well! I also bought a pair of tooth brushes in the infant isle that are really quite huge, but the bristles are super soft. He gave an enthusiastic thumbs up to those too! I keep thinking that he's teething because he will chew on anything that gets close to his mouth, but there's nary a bump, lump or tender spot in sight. This is a great way to "wake up" his mouth, but it was doing nothing to improve the strength of his suck or the muscle tone to keep his tongue inside his mouth.

So last Saturday morning I switched him from the rapid flow nipple to the slow flow nipple. It usually takes him 20 minutes to eat 6 ounces. That morning it took him forever to finish half his bottle and then fall asleep. Two hours later he finished the other 3 ounces. And this is how it went all day long. He was either eating or sleeping. Waking to eat and falling asleep during his meals. I thought he must be really working hard to eat if he was pooping out mid way each time. At about 4:30 I called my friend Beth in Virginia. She knows about these things. I explained that by that time of day he should have eaten 4 six ounce bottles, but that he'd just barely completed 3. We hatched a plan to let him eat for ten minutes on the slow flow, then switch to the fast flow so he could finish a meal before tuckering out. So at the next meal, I did just that, and he ate and then stayed awake to play for an hour. Okay, problem solved. Or so I thought. At his nine pm bottle we did the same thing. He finished in a reasonable amount of time and then I put him down for the night.

The next morning, Sunday, he had his six am bottle with the slow flow/fast flow routine and then I tucked him in for his customary morning nap. He slept through his nine am bottle and woke at 10:30 very hungry. He did well again with the slow/fast combo. The plan was to add one or two minutes a day to the time he was using the slow flow until he was able to finish a bottle in a reasonable amount of time and not tire out. At 11:30 he was zonked out on my shoulder. His head felt warm so I checked under the arm. He measured cool, but the top of his head felt really hot, so I checked in the hiney instead. 99.9. Jack almost always measures a little on the low side.

At 12:30 he was 100.2 and at 1:30 he was 102.6. When I undressed him to checked his temp he had that purpley mottled appearance like newborns get when they're cold. By the time I got him re-snapped into his onesie, his feet and hands were turning blue. Not good. So I roust The Middle Little out of the sound sleep of a nap to pile into the van and instruct The Girlie to sit by Jack and watch him, keep your hand on his tummy and tell me if his breathing changes. I called The Dear Daddy and left a message en route, all the while watching Jack in the giant baby view mirror. Dontcha just love those things?

Fortunately, when we got to the ER, The Middle Little sprawled out onto one of the bench seats to resume his nap. When I told the guard that I thought my baby was having trouble breathing, he looked right past Jack in his stroller and saw The Middle Little appearing to be unresponsive. He radioed back that he was bringing a baby back in respiratory distress, then ran off to find a wheel chair. I asked another guard, "Where is he going?" He said to find a wheel chair for the little boy. I informed him that it was the baby in the stroller who was in trouble, not the boy asleep on the bench seat. By this time the guard was so amped that there was a pending code in the waiting room, dang it all if he wasn't taking someone back to triage...and off we went. I left the Girlie to watch over the sleeping Podifer, as the triage is faced with a giant Plexiglas panel that looks out onto the waiting room.

So things moved fast from there. Jack was asleep and didn't seem to be in distress, just hotter now. His saturation was only 88%, so the nurse cut the tubing from a nasal cannula and had me hold it in front of his face while she unsnapped his onesie. Once he was up to 96%, we moved over to the scale and weighed him, 14 pounds 4 ounces, 25 inches long. While there the other nurse got a rectal temp. 104.6. And he started having sternal retractions and nasal flaring, wheezes over all lobes. The secretary rounded up The Littles while a nurse brought us back to peds 7. An IV was started, and blood sample drawn, a breathing treatment given. Social Services was there for another patient and she came in to help the other nurse and the secretary try to calm and reassure The Middle Little, because nothing I said was helping and he was sure his baby brother was going to die. The robust crying that reassured the Mommy and his nurse had the opposite effect on The Pod of Pods. He did pretty well until the needles came out and then he just lost it. The Pod has a fierce mean streak of his own, but when it comes to mean things being done to his sister or baby brother, or Mom or Dad, he just won't have it. He didn't know how to defend Jack in this instance. When Jack cried from the multiple needle sticks, he very clearly and calmly said in a commanding voice, "Stop that! You're going to kill him." Then he crumpled into tears while The Girlie tried to comfort, I tried to reassure from my position of keeping Jack still, and Social Services, the other nurse and secretary all tried to convince him that Jack would be just fine. And in a few minutes he was. And so was Podifer. Jack was breathing easier, the IV was in and secured, they'd stopped trying to cath his poor wiener and settled for a collection bag instead, and his new rectal temp was 102.8, compliments of the Tylenol suppository he'd gotten in triage. A little Motrin later and he was down to 100.8. The gal from Social Services stayed with the Olders to set up coloring books and crayons while I walked Jack down to X-Ray in my arms and the nurse towed the O2 cylinder along side.

Two X-rays and several missed calls later, the diagnosis was in. Right upper lobe pneumonia. I've never understood that part of technology that allows my cell phone to tell me that I've missed 7 calls, but won't allow me to call voice mail to retrieve the messages for which the phone didn't ring in the first place. Only in a hospital where the exchange of information between family members is generally considered important, does this phenomenon of technology exist. I understand it, but I don't like it. So, the wonderful and capable Dr HC, the pediatrician on duty, is standing there in front of me absently stroking Jack's wispy little hairs and telling me he has pneumonia. I explained about seeing Dr D just eleven days ago and about how I thought he was aspirating. She isn't willing to say yet that it's aspiration pneumonia, only that it's a pattern consistent with infiltration and inflammation, and while she doubts it, possibly a collapsed portion of lung. I like her in spite of the fact that she's telling me that my baby needs to be admitted. Dang. But she'll get his echocardiogram done! And really, how can you dislike anyone who just naturally starts stroking your baby's hair?

So she leaves to go write orders. The Pod of All Things Pod climbs up on the gurney to console Jack that he doesn't feel good. Now that Jack can breath and isn't burning with fever, he is smiling at his Big Brother and chewing on his hands. Dr CH said it was okay to feed him. I set The Girlie up with Jack and his bottle on the gurney and pick up the hospital phone. The Dear Daddy is understandably upset that he hasn't been able to get through to me since the message I left. I explain about cell phone reception in hospitals. I've worked in hospitals for 16 years and he's well aware of this cell phone reception thing. It all gets put into perspective when I tell him the diagnosis and that Jack has to stay. We make a plan. The Other Mommy has said she will come get the kids right away to spare The Pod any more distress. The Dear Daddy will pick them up at her house and get them fed, bathed, ready for school tomorrow. I will come home for a few minutes before they need their evening meds. We both agree that he should not come to the hospital because he will not do Jack any good. When Jack cries with a tummy ache, The Dear Daddy is so sympathetic that Jack carries on much longer than necessary. He'll do more good at home keeping the Pod assured that Jack will be fine. And he won't have to see his Snork poked full of holes and not feeling good.

The Other Mommy arrives just as we're packing up to move to the pediatrics unit on the third floor. They wheel in the extra pediatric crash cart. I am to ride on the gurney holding Jack while a nurse pushes the pediatric crash cart along side. Wouldn't it be better to put him in his car seat and strap it to the gurney? No, they say. That would waste precious time if "something happens." This is very sobering. I have transported countless critically ill patients in my life, but none where a crash cart was towed along side. Okay there was that one time that I did chest compressions riding on the side of the bed as we were flown down the hall to Burn Surgery...that time a crash cart was also flown along side, but hey, it was attached to the man in the bed. The mere presence of that cart put the fear of God into me. I kiss The Littles good bye and they kiss and hug Jack. Off we go.

Once upstairs Jack is outfitted into a baby gown that goes way past his little feets and placed into a giant steel and polyvinyl topped crib.

Vital signs are taken, O2 transferred from portable to wall mounted and the mountain of admission paperwork begins. Gown gets removed because he's still febrile.
He's stable so I ask if it's okay to pick him up. I finish the questions holding sleepy naked little Jack on my shoulder. They bring him the right size diapers. They bring him 3 boxes of formula bottles. I calculate that to six feedings: 28 hours if I factor in his usual 10 hours of sleep each night, and hope against hope that we won't be here long enough to use them up. Finally the nurse leaves and it's just me and Willie. I snuggle him close and think about how quickly things can change. It was just five hours ago that I first suspected Jack had a fever. Just three hours ago that I'd packed everyone into the van. Just an hour ago that we'd been brought to this room.

I snuggle Willie until it's time to feed him again. He only takes four ounces. That means those boxes will last longer. The RT comes in at seven to give him his breathing treatment. He sleeps through it. Finally, at 7:45 I ease him into his crib, kiss his temple, and pray to God that this will be the last time I have to leave him and walk away from him. He's having a rare snooze on his side, since all the monitoring equipment attached to him will alert everyone to any distress.
I meet the oncoming nurse, explain that I have to take care of a few things at home, that I'll be back within an hour. And as I turn to leave I remember. Jack doesn't cry very loud. She'll never hear him. She assures me that Jack is her only patient right now, she'll go right in.

I think I drove home even faster than I drove to the hospital. I gave the kids their meds. I kissed The Beloved. I dashed through the shower, because you just have to know my danged monthly curse that was over two days ago started again while we were in ER. I grabbed William's Boppy from his cradle, note The Beloved's mournful glance toward the cradle, grab a few of Jack's favorite toys, and the big bottles of Motrin and Excedrin for what was turning into day 7 of my 6 day headache. I kissed The Littles. I kissed The Beloved. And I dashed out the door with a fresh mug of coffee that My Miss Peach made for me while I was in the shower. The Girlie blows me away. She wouldn't lift a finger to put me out if I ran through the room with my head on fire, but she knows I'm stressed and that coffee is my number one comfort "food," so - she made me a pot of coffee!

I made it back to the hospital within the hour. That had to be a record. And sure enough, Jack's nurse was in the room, rocking him gently back and forth, in a standing position, feeding him that remaining 2 ounces, all the while expertly keeping his ears above his mouth. I must remember to ask her to show me how to do that trick! She said he hadn't cried, but he awoke chewing on his hands while she was checking on him, so she tried a bottle and he seemed hungry and willing to eat. Bless her!

The rest of the night was pretty uneventful. His O2 sat alarmed now and then when he moved. Any time the oxygen was off because he'd pulled the tubing into his mouth, his sats dropped into the 80's. His temperature rose again and Motrin brought it down again. He got more IV antibiotics. He ate and he got his diapers changed. As soon as the fever rose it kicked his butt and he was lethargic and mottled with blue hands and feet. As soon as the Motrin kicked in, he was awake, cooing, chewing on his toys from home. I held him a bunch. It was really nice to be able to just concentrate on William for once.

I had to leave at 2:45 in the morning to cover the over lap between The Beloved leaving for work and Miss Suzie arriving. As soon as The Littles were on their buses I could return to Jack. But I turned off the alarm clock by accident instead of hitting the snooze button. So I had to drop the kids at school myself as their buses had already come and gone. I wound up arriving back at the hospital about 30 minutes later than I would have, feeling like the devil himself had chased me all the way there.

And what I see is a student nurse propping Jack up with one hand into a semi-reclined position, and just pulling a spoon out of his mouth with the other. I ask "Why are you feeding him food?" She turns with a pleasant smile and says, "Oh he still seemed hungry after his bottle and you weren't back yet so I started feeding him. He's only had just one bite yet if you want to take over?" So I let her know that Jack isn't getting solids yet, and by the way, what exactly was she feeding him? "Oh. I mixed a half jar of applesauce with the rice cereal. That's what the kitchen sent." Poor girl looked terrified! So while she's wiping the incriminating remnants from his face and saying he did really well, I suggest that she give him one more bite so I can see how well. And she did. And he did! There had been quite a bit on his face before she wiped it, but I don't think she was stretching the truth that he'd had only one bite. Perhaps she just gave him a smaller amount now that she knew this was his first food, but he worked it around in his mouth and it all went down! He seemed neither surprised nor displeased with this stuff in his mouth, so I asked her what his reaction had been to the first bite. She said he didn't really have any expression, just kind of rolled it around and spit most of it out. So I've tasted the bitterness of that first "missed" event in his life, and there won't be a picture. I'll just develop selective denial of this event when he gets solids for the first time for real. This time totally does not count because it wasn't supposed to happen and I wasn't there to see it. There. All better. She was so apologetic. I assured her that the fault was mine, I'd heard the doctor say she was ordering a regular diet for him but that it simply didn't occur to me that the kitchen would send actual food. What else was she to have done with baby food sitting on the tray and a hungry baby on her hands? So, we reviewed what amounts Jack usually takes in the morning and I was able to teach her the criteria Jack needed to meet to start solids and the rationale behind it, tailoring that criteria to his having Down syndrome. I knew she'd need it for the care plan all nursing students have to write every day. Been there, done that, don't ever wanna do it again! She was an attentive student. She finally blurted out that this was her first day on the peds rotation and when they said in report, "Mom's a nurse" she was terrified. I said "Oh my goodness! You poor thing! It's bad enough when the patient is a nurse, but when the patient's mother is a nurse? Terrors!" We got along just fine.

At about 10:30 Dr E made her rounds. Jack had been taken off O2 that morning, but Dr E said a saturation of 92% wasn't satisfactory, so back on he went. I was torn. On one hand, I agreed that 92% wasn't acceptable, but on the other hand, going back on even a small amount of oxygen meant continued illness, lack of improvement, do not pass Go and do not collect $200.00. (Is it still $200.00 or has the economy affected Monopoly, too?) We'd be staying in the hopspittle.

Dr E came by again at about noon. Jack's highest fever so far that day was 100.2. She said he had to have no fever for 24 hours and be off oxygen before he could go home. I knew that but I still didn't like hearing it. Somehow, having her simply not say we could go home would have been much easier to take than telling us we could not go home. Dr E, per my request, had ordered a thyroid panel for Jack. She said every thing was within normal ranges, so that was very good news! After she left I kissed a Sleeping Little Squee and I beat a hasty retreat to the cafeteria to buy some lunch before they closed.Willie loved the mobile that the student nurse brought in for him! It lulled him to sleep with the gentle tunes of Beethovan.
When I got back, with my styro container of mystery meal, Jack-Snack was still sound asleep but he was having his echocardiogram!While I am thrilled that The Snorks' heart is finally getting it's much awaited and many-a-time-cancelled echo, there's just something not quite right...
...about my tiny little wired-for-sound and band-aided little baby boy having such a grown up procedure. I am thankful for technology, and that Willie slept through the entire process and good images were obtained.
The echo tech said he'd already reviewed Jack's first echo from birth. He said there were some pretty significant changes for the better! He said at birth that Jack had a small VSD, a smaller PDA and a PFO. I'd said that the cardiologist had only mentioned the small VSD, but that I'd discovered the other two defects by reading his medical records. So...the news today...the unofficial read according to both the tech and Dr E is that Jack's VSD appears to have closed, the PDA is certainly closed and the PFO is pinpoint in size. The tech observed a small amount of pulmonary hypertension but said it was consistent with pneumonia. Dr E said it would resolve as Jack's lung cleared. Good, good news indeed!
His favorite links in one hand and the oxygen saturation monitoring wire in the other!
Jack and I spent the rest of the day pretty quietly. Jack waved his arms as the leaves on the mobile opened and closed around the rotating rain forest animals.
He spent a fair amount of time cooing at the the brightly colored parrot!
Ohhhhh! Finally, a smile and a quiet breathy giggle from my boy!
And I even caught one of his very rare raspberries on film...even if it does look like he's frowning!
He played when he didn't have fever. And when he played, one nurse or another would come in frequently to see why his pulse ox wasn't providing a good reading. They'd note his legs up in the air kicking and pumping as if he were trying to get a four-limb tackle going on his zebra and moose! "I've gotcha now moose!"
One of the nurses said, "He's trying to get that moose to 'tap out!'"
"I've had had my fill of moose! Let's have some zebra!"
When he got hungry he ate well, but not with his usual appetite. He had taken to eating four ounces all at once, and sometimes he would take another two ounces and sometimes he would take a nap instead!All he needs here is a tall cool one and the remote control! Gotta love that belly!

At 3 pm we got a different student nurse, this one a nice young man who was very cautious about asking me about Down syndrome. Watching him struggle to beat around the bush I finally said, "Ask what you want to! It's okay. I'm quite okay with William having Down syndrome, and Willie really doesn't seem to care, so stop trying to be so tactful!" I told him, as I had the morning student nurse, that I'd gone my entire pediatric rotation without seeing any of the pediatric things we were studying, until the very last week when a little girl was admitted with cystic fibrosis. (It turned out that she was my next door neighbors grand daughter. The Grandma had "adopted" my Girlie as her own. Shortly after My Middle Little was born, she lost her grand daughter at 11 years old. She presented Miss Peach with her grand daughter's prized possession, a large pink Beanie Baby Bunny, collector's edition. To this day, The Peach keeps the Bunny in a place of honor, carefully sealed in the protective clear plastic bag it arrived in.)

Toward evening Jack got a roomie. He was a sweet and stunningly beautiful 2 month old baby, right lower lobe pneumonia. I tried not to eaves-drop, but it's pretty hard not to hear everything in a 12X12' room. He was a foster baby and his foster Mom got him from his 16 year old biological Mother at three weeks. This poor little guy sounded like he was coughing up the ocean with almost every breath he took. And then he'd cry, and then he'd cough more. The foster Mom had to leave at 8pm to see to three other foster kids in her care. I have to tell you, every time that baby coughed or cried throughout the night, there was a nurse in the room within 30 seconds.

Which is really great because I had to leave Jack at about 6:45 to stop in at home to check on the Olders. When that baby cried, Jack got the little puckery pouty lip thing going on and he looked so scared. It tore my heart out to leave him, but I had to make an appearance at home. I tucked his sleeping little self into his crib and then I went to the charge nurse before I left and explained that every time Jack's room mate cried, he'd get the scared face. I asked if she would please check on him often to make sure he wasn't laying there scared with a cry too weak for anyone to hear. She promised that every time his room mate cried, she would go tend to Jack. So I raced home and while I did I called my friend Beth in Virginia, because she knows about these things. She has caller ID so she knew it was me. I was sobbing. Sobbing. I kept picturing Jack's scared face. So I said, "Jack is okay It's just me He got a room mate and every time that baby cries Jack gets scared and gets the pucker lip but I have to go home for an hour to check on the kids and I know he's fine and I'm just over tired right?" And of course she knew exactly what to say. Which is really great because The Middle Little was devastated that I hadn't brought Jack home. If I'd been crying, nothing, nothing, would have convinced him that Jack was alright!

When I arrived back at the hospital barely an hour after leaving, both baby boys were sleeping peacefully. The boys' night nurse was sitting in a rocking chair between their cribs, reading their charts. All was well. And I had another fresh brewed mug o' Joe, compliments of The Peach Girl, not to be confused with The Peach Pie, another name for Pod, Podifer, The Middle Little. Through out the night Jack's little roomie cried quite a bit and had about a zillion bouts of coughing. They sucked him out and comforted him, then rocked him to sleep, and I was relieved to see that Jack didn't get any more puckery pouty lips. Seeing their attentive care of that little baby made me feel secure that the charge nurse had indeed checked on Jack often. I fed my boy at ten pm and he was down for the night. I read. I watched TV. I finally collapsed onto the roll away bed at about two am. Jack-Snack slept peacefully in spite of the many, many times his poor little roomie woke up coughing and crying.

That brought us to 6:00 am Tuesday morning. Jack had gone from .25L of O2 yesterday down to .125L before bedtime last night. So, between the RN, the RT and The Mominator, we decided to see if he could fly on his own and turned it off at 6:00. I had to leave during change of shift in order to get The Olders all the way to two towns over for an appointment we simply could not miss. The Middle Little would be out of meds come Wednesday, and we'd waited for this appointment with their new pediatrician for over a month! And we got there at 8:00 only to be told that "Oh nooo, Dr J is never here on Tuesday." After much teeth gritting and counting to ten, I was able to recall the gal's name who set these appointments up. "Oh yeah! She's new! She doesn't know much yet." And this helps me how? At the time, the office manager said the best she could do was to set us up for Thursday the following week. Have we tried Urgent care? Yes, thank you, three different times. Well what about the Emergency Room? Yes, been there, done that, was lucky enough to get a doc who wrote for a full month supply because I was able to provide proof that we had an appointment TODAY with Dr J, and was issued the stern warning that the emergency room was not the proper resource for "this sort of thing." Yeah. No kidding. But what else do you do when the kids' somewhat shady doctor stops taking your insurance and you wind up paying $50.00 a pop per kid to divide 5 minutes of his time because he's still the only pediatric neuro-psychiatrist game in town, and then you run out of cash? Our third visit to Urgent Care got us a referral to a pediatrician who then referred us to Dr J. I'll post more about that fiasco later, but for now I will just say that as I drove through that tiny outpost of a town back to our own thriving metropolis, crying and seething over the phone to Grammy in Idaho, the office manager called and said she'd gotten us in for this Thursday at 1:00 and 2:00. Eeeesh! I got The Older Littles fed breakfast on some highly nutritious McDonald's drive-thru food and then dropped them off at their respective schools to rush back to the hospital to the Little Little. But I was still seething that I'd had to leave him in the first place, especially for such wasted effort.

And when I arrived, he was still off O2 and saturating 96%!!! And we're are once again wearing clothing! The O2 cannula is still in place, but the flow of oxygen is off! The nurse left it in place to spare the skin on his face because he's already pulled it off several times, requiring re-tapes. Dr E rounded at about noon, reviewed his progress and said that while his RSV culture was negative, she'd really like to keep him at least one more day for IV antibiotics. However, she felt confident to send him home with his Mommy nurse, and she was pretty sure his new roomie was infectious and wanted to get him out of there before he could catch anything. So, we busted outta that joint with a script for some oral antibiotics and a cute card (really!) from Jack's admitting ID photo, signed by all of his nurses, RT's and doctors. Oh happy day!
The O2 is off, the IV is out, and we're going home!

I was so very, very happy to be driving away from the hospital with Willie in his car seat behind me! And just about the time I realized we couldn't go home quite yet and turned the van around to head back the way we came to go to the pharmacy, and about a nano-second after I started wondering...what did I do with his discharge papers?...my cell phone rang. I knew who it was! I fished it out of Jack's bag to see the hospital on the caller ID. It was the charge nurse. I'd left the papers and Jack's "Stay Healthy" card on the overnight table. The student nurse who wheeled us out would meet us out front with them. Duh! In my own defense, I did remember to take the baby home, and at this point I'd had a about six hours of sleep in three days, which was not helping my going-on-day-ten headache.

So we made a quick trip through the pharmacy where I am told Augmentin is not covered on our health plan, and then it turns out that they approved it anyway. This is becoming a popular theme! No it's not. Yes it is. No, it's not. Yes, it is. Is not! Is too! Is NOT! Is TOO! IS NOT! Is-too, is-too, is-too, is-too! Eeesh. And then finally we are headed home.

For what happened next, I should truly be canonized, or knighted or at the very least, nominated for saint-hood. My cell rang. It was Miss Suzy. Princess pooped all over her kennel. How do you want me to clean it? Did I say, do the best you can, I'm still at the hospital? Did I say, we won't be home for a few hours yet? Did I detour and take Jack and I out to lunch at our favorite little hole in the wall diner for a little sustenance? No. I did none of those things and bellied up to the bar and said, to my own dismay, "I'll be home in a few minutes." There were so many other responses that would have been reasonable in this particular set of circumstances, not with standing the suggestions I've already made. For instance, "What? Suzie? Can you hear me? You're breaking up! Hello? Hello? Suzie? I can't hear you, are you there? Hello?" That would have been a good one. How many times have you started speaking, thinking that the person had answered, only to realize that you were hearing voicemail? "Hello! Sorry I can't take your call right now. Please leave a message and I'll get back to you as soon as possible!" Or I could have just hung up. Or tossed the phone out the window. And then drove around in circles for two hours, seeing how many consecutive times I could run it over. But no. I had to say, "I'll be home in a few minutes."

The stench that greeted me was straight from the deepest bowels of hell indeed. I could smell it before I'd gotten to the door. Miss Suzie had just gotten there ten minutes before her call to me, so it was still rather potent. Sophie was no where to be seen. She'd taken refuge in my bedroom. On my bed. The guilty party was looking up at me with doe eyes from the confines of Sophie's kennel. And her kennel looked like it had been pressure blasted with diarrhea. Unbelievable.

Let me stop here and say that with three big dogs in the house, and in our living spaces, we've put the ginormous kennels to use as furniture of sorts. The "table" under which Princesses kennel resides holds my computer and several printers, plus the mountain of detritus that usually winds up there becuase the kids have put it down where they stopped using it. And now I'm thinking that Princess must be sick. What else smells like that. She must have Parvo. Will our health plan cover that?

I gathered all the forces at hand together to relocate the mountain of junk to the couch and lift the computer, pull out the kennel, wedge a chair into it's place to hold the computer, and then a glove clad Miss Suzie helped me haul the kennel out to the curb to begin the awful process of cleaning it. As we're passing through the front hallway hoisting a poop plastered kennel in the air, I glance at Jack still snoozing in his carseat right where I'd plopped him on the front room floor and say to Suzie, "Good grief Suzie...just about the time you'd think I've run out of stupid stuff to ask you to help me with..."

That's when Heather arrived from the ART. She took command of The Olders and thankfully scooped Jack out of his carseat to escape to realms less odiferous in the back of the house. While I'm cleaning out the kennel, I'm getting more and more concerned that Princess may have Parvo. The weather has been cool, not Parvo weather, but if it can happen, it's going to happen when I'm least equipped to deal with it. I got the kennel cleaned and in a sunny, windy spot to dry. The house still reeks. I send Princess out to the back yard and the odor clears significantly. So I go check her out. There are no signs of poop anywhere on this dog. I let her back in. The house reeks again. Dang it! So, into the tub we go. Good thing for her she has always jumped right into the tub. No arguing, no whining, just a good doggy. I dig out the shampoo and go to it, all the while, trying to calculate how much three pure breds are going to cost to treat for Parvo, because if one gets it, they all get it. In times past the vet treated one and then cut me a deal by just charging my for the medications and supplies to treat all three of them at home. And yes, we do get our yearly Parvovax. But that hadn't saved them when they were puppies. They'd gotten it anyway. This must be Parvo.

I decide against leaving Jack at home because people don't catch Parvo, even little babies, and well, dang, he'd just gotten out of the hospital! We head off to the vet. $168.00 later the vet can find nothing wrong, except a reluctance on Princesses part to leave Jack's carseat. "Has she had any recent stresses?" Are you kidding me? This was about stress? Really? This blow fest all over my home was becuase her Puppy went missing? And suddenly it all makes sense. She had no fever. No elevated heart rate. No fast respirations. No further diarrhea. No signs of dehydration. No endless slobbering. Her nose was cold. She was not depressed or morose. She was perfectly happy laying on the floor staring up at Jack. I'd come and gone several times but Jack had not. Her Puppy was missing and no one told her why. My one comfort is that the doggy Mommy truly loves her Puppy. I was so tired at this point that I didn't know whether to gather them both up in a dog pile of hugs and licks or to just sit down and cry.

Thankfully, by the time we get home, thanks to Miss Suzie, the house mostly smells habitable again. And about ten minutes after that, The Dear Daddy gets home from work. Like I said.....Eeeeesh!

Welcome home Jack. Everyone missed you! Even your four legged siblings.His poor little face was fine when the opsite was first removed...
...but as the night wore on, it got more and more reddened until it looked like this! You can actually see where the oxygen tubing protected a strip of cheek!
I'm just so glad he's home, and by morning, all of this irritation to his cheeks has disappeared!