An introduction to School!

It's hard to believe that our 'baby' Jacob turns three TODAY!

Turning three means many mile stones for our little boy. Not the least of which is the fact that he transitions from Children's First, the therapists he's been using since birth, to the care of our school district.

I've spent months fretting over the fact that my little boy will be picked up at our doorstep by a giant school bus, whisked into the arms of strangers, and off into an unknown school with new, much older and larger classmates.  It's been nerve wracking to me to allow my toddler to branch out into the big new world on his own. No longer will I be driving him to his therapies, signing him in, washing his hands, walking hand-in-hand to circle time, opening the door, and making sure he is settled before I scurry away to revel in my 2 hours and 15 minutes of relative silence twice a week.  Now, I will be waving to him from my porch as they lift him into the bus (he is too short to climb the stairs himself) and close the big glass doors behind him.  From the time he leaves my home until the time he returns into my arms, Jacob will be gone a whopping 4 hours and 15 minutes, four times per week.  Thursday will be his last day with everyone he's known all his life, and on Monday, he will be thrust into four times more work/play time than before.

Honestly, I've spent months freaking out about this scenario.  Finally, last Friday, I got the opportunity to go to Jacob's new school, meet his therapists and his teachers - at the Middle School.  Crap.  Really?  The middle school?

As soon as we hit the parking lot and I unstrapped Jacob from his car seat, he was pulling at my arms, trying to make it to the sidewalk.  His face lit up as if he knew where we were and he wanted to explore.  The second his tiny little feat hit the asphalt, he was in a run, heading for the sidewalk, which he stepped onto before running again.  I hustled to keep up with him, and herded he and his big sister through the entry way filled with glass doors.  He giggled loudly to hear the echo of his voice in the brick walls and linoleum landscape, causing several faces to turn to the source of the noise and break out into impulsive smiles at his infectious grin.  As we waited for our escort, Jake ran from chair to chair to pile of papers, to the window, then more papers, systematically exploring every square inch of this new space with interest.

Soon Shannon arrived with a grin on her face, only to be greeted with an excited grunt from Jacob.  He managed to obediently hold my hand until we were half way down the hall before all the brightly colored doors, lockers, and artwork got the best of him. He yanked his hand from mine and ran as quickly as he could, giggling and yelling with excitement with his big sister hot on his trail.

After a few moments, we managed to wrangle both children into the correct room.  When Jacob crossed the threshold into his new learning environment, he didn't even stop.  Instead, he increased his cadence from excited to hyper as he darted from toy to toy before settling on the items he preferred the most.

After almost an hour long meeting with the staff, it dawned on me that Jacob had been relatively quiet in his play and discovery time of the classroom.  Success!!

But it wasn't until it was time to leave and he was running away from me, tears streaming down his face because he didn't want to leave, that I realized that all those fears and concerns that had eaten away at me for the past several months were a waste of time.  Jacob is going to be juuuuuust fine.  The only thing that's going to upset him in this transition? Coming home to mamma.  :)

So Many Things To Be Thankful For

NOTE:  This original post was written right around Thanksgiving, but I forgot to post it!  I hope you enjoy it anyway :)

I'm sitting here in another hospital room as my mother sleeps with nothing better to do than take stock of the past year.  From the outside looking in, a person could be horrified by all that we've been through.  Since that fateful day in April 2010 when we found out that our unborn child would have a heart defect and be born with Down syndrome, we've been slammed.  First Jacob, his birth, 3 weeks in the hospital for sepsis and meningitis, then time for his heart surgery, next time in the hospital for failure to thrive, and recovery.

The same week Jacob was finally given a clean bill of health, KC broke his leg in what is apparently the worst possible way you can break an ankle, including both bones, and all the tendons and cartilage in between them.  Now, 9 months later, he has FINALLY given a clean bill of health by HIS doctor.

 In June, the same week KC was allowed to begin working light duty, Nathan had surgery on HIS leg - lengthening his Achilles, and grafting bone to two places on his foot.  The SAME DAY that Nathan got a clean bill of health from his doctor, Elisha broke HER foot in a volleyball game and was out for 6-10 weeks.  Because we apparently didn't have enough to worry about,  there was Courtney's visit to the emergency room because she'd gotten into a bottle of Excedrin PM (luckily we discovered that I'd found her before she ingested any).

Within a week of Elisha's clean bill of health, we found out that Jacob has progressive hearing loss (we're not sure if it's temporary or permanent yet).  A week after that, his blood work came back hinky, and we had to re-test to rule out cancer.  And 3 days after that phone call, we found out that my mother has cancer (ultimately we found out that it is inoperable Stage 4 Pancreatic Cancer). In the last 18 months, we have had no more than 3 DAYS that have not been mired by illness or injury and I do not see and end in sight for a while.

With all that has gone on in the last 18 months, how can I POSSIBLY find anything good in it?  Well, I must admit that I have shed my share of tears, especially as of late with the knowledge of my mother's cancer.  But how can I not see the good in all of this? Dwelling on the bad would literally drive me crazy anyway - as if I need any help!!!

 First off, I have often said that kicking and screaming will do me no good.  It only wastes precious energy that must be used for more important things like caring for my family both physically and emotionally,  and making sure that they know that I love them.

I've been blessed with the opportunity to realize how important each and every one of my family is to me. And because of this, I am so much less likely to take them for granted. Especially with Jacob.  I know that I'll most likely regret it as he gets older, but I spend every chance I get just gazing into his beautiful blue/brown eyes marveling at his perpetual happiness, and resilience. I marvel at his strength of character and of body. I can't help but squeeze him tight whenever I pick him up, and often find myself breaking out into random grins as I watch him grow and progress.  At 13 months old, he is already standing on his own, and has even taken a step or two.  This is HUGE for a child with Downs.  They're supposed to be delayed. They are not supposed keeping up with the other kids their age.

With my mother's new diagnosis, I have the opportunity to tell her how much I love her, what an impact she has made on me in my life, and how she has made an impact on the lives of my children.  Cancer is a horrible thing. But it also enables our family to mend broken relationships, and become closer to one another  - something that would not have happened without such a life-altering event. And its something that my mother has always wanted in our family. I just happen to think this is an awfully extreme way of doing it, mom! :\

I have been blessed with patience.  There, I SAID IT.  I've acquired patience!!! (family joke - NEVER EVER pray for patience!  Things like the last year happen when you pray for patience!).  I've found that the little things don't bug me nearly as much as they used to.  I've learned not to sweat the things that I cannot control.  I can't control injuries or sickness.  I cannot control whether or not Jacob will be able to hear, or if he needs hearing aids in the future.  Therefore, I often find myself saying, "Whatever".  I take what I'm given and I deal with it.  I don't stress over what may or may not happen (OK, I did with Jacob's cancer scare - his blood work came back clean, by the way).  I just roll up my shirtsleeves and and get to work.

I am thankful for less grudges.  I have noticed as of late that those things that would have once hurt me or would have festered into resentment or hatred in the past, now roll off like water on a duck's back.  I don't have the time or energy to hold a grudge.  I say my piece and get on with it.  It's enabled me to hold onto relationships that, in the past, would have been discarded over petty disagreements, or being unintentionally offended. And it has enriched my life with people who touch it in so many good ways.

I look around my house and I see dirty dishes, toys on the floor, unfolded laundry, and a messy desk.  Yes, my house is messy. Every day.  Regardless of how hard, or how often I clean it.  It comes with the territory of  a family of 6.  4 children (1 of which is a human tornado), 2-3 therapy appts per week, doctor's appts, sports for the older kids, driving them to and from school, groceries, church, and working nights till 2 a.m. to name a few.  I could sit in a corner crying because my house is dirty, but why?  A little dirt never hurt anybody.  And I've got bigger battles to fight.  When I look at my dirty home, I know that my time was spent doing more important things: being a mom for my children and a wife for my husband.  We have food on the table, happy, relatively well-adjusted children, a roof over our heads, a job that KC LOVES to go to every day, friends & family who love us even more, and so much more.

Yes, I have so much to be thankful for.

I used to think that your health was the the ultimate.  It didn't matter what you went through so long as you have your health.  But it isn't until you no longer have health that you realize that this mentality is sooooo not true!  What matters most is that you have love, and laughter, an eternal perspective, and friendship.  What matters is that you keep plugging away at whatever life and God gives you, making the most out of every moment, because those moments, however many or few, are what matters - and what you do with them.

Never ever give up.  Ever. Never let life get you down.  Ever. We have been given these trials in our lives for a reason.  I'd surely like to find out what those reasons are so that I can learn from them and move on! But until then, I continue to be thankful.  For life, love, happiness, family, friends, my testimony of Jesus Christ and the life hereafter, forever families, and everything that has gone RIGHT in my life.

Thank you for letting me get up on my soap box.  I think I shall get off now....and get back to work! :)

Mommy Dearest

Now Jacob is no respecter of persons.  He doesn't care if you're Courtney, a 20-month-old toddler who has a propensity towards screaming at high pitches and doing a hard-core head banging dances to whatever music is on the radio (provided she doesn't jump on him).  He doesn't care if you're some stranger dropping by to say hello.  And he even wouldn't care if you were some big shot like the Pope or the Queen of England.  He treats everyone the same.  He quietly endures us all provided we don't do anything to hurt him or annoy him.

At least I thought this was the case with Jacob until this evening.  For the first time ever, Jacob showed a preference towards someone.  The boy doesn't even really smile yet - on purpose anyway.  He just goes about his business happy to be held by whomever chooses to pick him up and love on him for a few minutes or hours.  It's all good to him.

This evening after his evening round of medications and the standard gag/puke/gasping fit, Jacob was laying in KC's arms and I came over to check on him while he was in his fathers very-capable hands.  As I began speaking to KC, Jacob turned his head, looked at me, and proceeded to push off KC's arms and twist his body towards me almost twisting out of KC's hands.  For a little boy who doesn't even have the muscle strength to hold his own head up yet, Jacob seemed awfully determined to be in the arms of his mother.

Of course I was MORE than happy to comply with his wishes and we proceeded to have several minutes of mother-son bonding.  How could I not?  His wish is my command and that darned little boy has me wrapped tighter and tighter around his little finger each day he's alive! Ah yes! It's good to be mom!

Recharging my Batteries - Nap times

I won't lie.  Today was almost completely unproductive.  All those late nights have finally gotten to me and so I got almost nothing done. 

KC and Courtney sleeping April 2009

Once the kids were taken to school, I had one hour to tidy up the house before the dietitian came over to check on Jacob's progress and to see if any changes needed to be made to his diet.  She got to experience first hand his gagging fits and seemed quite disturbed by the whole incident while I sat there with a towel under his chin just trying to catch all the saliva and bile he was throwing up.  She mentioned that she would see if she could put in a good word for us to get the liquid Prevacid rather than the tablet form or see if we can be put onto some other form of medication.  It would be nice, but I'm not holding my breath. 

About an hour after she left, Courtney was kind enough to decide she wanted to take a nap and she went down without incident. Plus, bless her heart, she slept for 3 hours!!!!! I'm lucky if this little girl will stay in her bed for 30 - 45 minutes on most days.  30 minutes after Courtney fell asleep so did Jacob while I was rocking and burping him.  He'd been fitful all day, so I just let him stay on me and the entire house got a 3 hour nap.  It was blissful.  We were awaken by Elisha coming home from school at 3PM and the normal everyday after-school life began.  But it was nice to accomplish nothing but get a nap in today.  It was a great battery re-charger.  I'm hoping that it will have recharged my batteries long enough to get through this weekend. Yay!

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Hangin' with the Cardiologist - Preparing for heart surgery

Today was the much anticipated day to visit the cardiologist.  We had been told by Dr. Jensen to expect to set a hard date for surgery and to maybe even meet our surgeon.  K.C. took time off from work, I found a very VERY wonderful woman to watch Courtney for the day (bless her heart!) and we took off to the cardiologist to see what fate had in store for Jacob.

Amazingly, we were on time - in spite of the snow and leaving the house 20 minutes late.  In past visits, we usually got to wait in the waiting room at least 45 minutes to an hour before being seen.  Today, I think we were in our room in less than 10 minutes.  We were greeted by a warm, friendly nurse who proceeded to TRY to get his blood pressure (to no avail! - he just wiggled too much!) and to check his oxygen levels -still hovering around 90-91%.

We were whisked down the hall to check his weight - a whopping 10 lbs 2 oz. and then across the hall for his echo cardiogram which told us that he has only a slight leak in his valve. This apparently means that repairing his valves will have a much higher likelihood of being successful the first time around.

After that, we had the "too many cooks in the kitchen"  experience again.  This doctor wanted to have surgery in 6 - 8 more weeks rather than Dr. Jensen's 2 weeks.  She also upped Jacobs formula mixture to 28 calories per ounce and his intake to 28 mls per hour (even though Dr. Wagner had been excited by his weight gain 2 days earlier - "not too much and not too little").  K.C.  politely but firmly informed this doctor that we had been told to expect 2 weeks for surgery and she complied with his request.  A consultation with the surgeon has been set for next Wednesday.  We will meet with him, he will check Jacob out, and he will choose a time in his schedule for the surgery.  After that, we will meet with the cardiologist the day before surgery for a panel of blood tests, another echo cardiogram, and a series of other procedures.  From the sounds of it, this will take several hours.  I'm not sure whether to be excited that Jacob's surgery is finally here or to be scared out of my mind.

It helps to know though that in spite of the communication quirks, we really ARE working with an amazing group of doctors and specialists.  I know that Jacob will be in good hands and I've been told by many that our doctors are some of the best around. 

(Jacob on the way to visit the cardiologist - checking out the new snow fall!)

As I sat contemplating what we had in store for us over the next couple of weeks, I couldn't help but notice how much my baby has changed even in the last few days.  He has finally begun to grow hair, he has gained control of his hands and uses them often to bat away our hands as we try to give him his Prevacid orally, and he's so expressive with his eyes and mouth.  It's like he's come alive!  He's checking everything out around him and has cut his sleeping time in half.  We've even caught him trying to roll over - and almost succeeding - a couple of times!

I find myself unable to resist picking him up for no apparent reason and just looking into his big blue eyes, marveling at what a fun personality is beginning to emerge from his tiny little body.  His zest for life. His ever-present patience with us (you'd think we were first time parents with the way we bumble around with him!) and those around him, his amazing curiosity to see everything around him, and so much more.  I know that life as we know it is just a hiccup.  Jacob will be scurrying around with us in tow in just a matter of a few short months and all of this will be just a distant memory. 

Oh, I can hardly wait!!!

Counting My Blessings - Jacob is not a trial

Quick Note: OK, I fell asleep last night with Jacob in my arms and didn't wake up again until 4 a.m.  Soooo even though the time stamp says it's Monday, just think in your mind that I'm typing like it's Sunday! ;)

Today was my turn to go to church with the kids.  K.C. got to stay home with Jacob and I got to be spiritually enriched this week.  I think of all the days so far, today was the day I needed it most.  I'm not sure why, but I'm sure that the fact that I haven't made it through an entire 3-hour session in nearly 4 or 5 months had a large part to do with it.  I used to think that sacrament was the only hour that truly mattered, and that the other two hours were basically 'fluff' for the adults but more geared towards giving the children and youth the time they needed to learn what they needed to grow to be spiritually strong adults.  But today, I felt like this time around I was recharging my batteries in each of the classes and came home ready to tackle the world.

Believe me, I needed that recharging.  We're in the late session now, which means that church starts at 1PM and we don't get home until 4:30 p.m.   So today I came racing home, made dinner, took Elisha to some Stake Youth Choir thingy at 5:30, came home and tried very hard not to scream at small children and husband
while I tried to eat my dinner, prepare FHE, get the house clean, and make sure Jacob got his meds before the Carpenter Family came over for  FHE at 7:00.  Luckily, wonders never cease and I even had 2 minutes to sit down for a second and breathe before the doorbell rang and our guests arrived.

All the time the Carpenters were here holding Jacob and spending our much-needed time together I kept looking over at Jacob and marveling at how much he has begun to grow.  He's no longer the itty bitty little baby (although he is still pretty small - still in his newborn clothes!) that used to scream FRAGILE every time you looked at him.  He's finally chunking up a little bit, and beginning to take on the look of  'baby'.  He doesn't look like he's going to break by merely looking at him any more.  And I have begun to think that maybe, just maybe, he will be strong enough for his surgery in just a few short weeks. 

The idea of having them open up his chest and work on his heart horrifies me.  I'm not quite sure  how I am going to react.  But at least I've had months to prepare myself emotionally for this event.  I'm not stupid enough to think I won't cry when I see  him.  What I'm shooting for is to just not absolutely freak out and go into uncontrolled sobbing.

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Today in Relief Society the lesson was on Enduring your trials and I felt like all eyes were on me (of COURSE I'd chosen to sit in the front row).  Weirdly enough, in spite of everything - all my rants of frustration. All of the tears and fears.  Today I didn't think of Jacob as a trial.  I look at that little boy and all I can think of is how lucky we are to have him!  How blessed we are to have this adorable little spirit in our home to remind us of the importance of patience, endurance, love unfeigned, innocence, and how screaming when life gets hard really doesn't do anyone any good.  Jacob has taught us how to have peace in the midst of a storm.  How to love someone with all your heart.  How to forgive when you've been hurt. How to optimistically hope for a happier day. And how even a simple smile can brighten anyone's day and lighten their load - even for just a moment.  Yes.  I do believe that Jacob has taught us so much.  He has never been a trial.  Only a blessing in our lives and in our home.  I would take 100 Jacobs in a heart beat if I could.  Each day with him teaches me to be a better person and to count my many blessings - count them 1 by 1.

1 Step Forward: Finding a Solution to Jacob's Reflux issues.

Down Right Living: Jacob hanging out with his daddy

Is it strange of me to revel in the quiet days? Today was soooo nice.  It seemed almost normal.  Elisha spent the day at a friend's house sledding.  Nathan spent the day reading another book from the Lightning Thief Series. KC is spending the evening watching Band of Brothers with Jacob on his lap and smiling every time Jake smiles in his sleep.

The last few days have been pretty nice with Jacob since we've been able to get him to take his Previced. We'd experienced weeks of him throwing up literally everything that went into his mouth along with any juices or saliva he was creating on his own only to discover that the Previced was not dissolving in the milk we were using (not to mention Jacob hates the taste of the Nutramigen formula).  So, we talked to the doctor who instructed us to crush the Previced pill as much as we can, then wet our finger and place it in the pills granules.  When the granules stick to our finger, we are to place it inside his cheek and let it set there for several minutes to absorb.  After a day of doing this, we discovered that not only was Jacob's gagging drastically down, so was his vomiting.  In fact, Jacob has begun to nurse and has begun to keep it down for the last 2 days.  I try not to get excited for fear that we'll back slide again, but I can't help but be extremely appreciative of the little bits of progress we make when we make it.

What a great start to our year :)

The Start of a FABULOUS New Year!

Call me naive. Call me an eternal optimist. Call me down-right stupid.  I don't particularly care.  But I've decided that 2011 is going to be a FABULOUS New Year!

2010 was not my favorite of years by any stretch of the imagination.  I am 3 hours into this new year and I've decided that I am NOT going to have a repeat of last year.  Nope. Not me.  Not gonna happen. Nuh huh.

As I took stock of 2010 and began forming the goals for this upcoming year I realized that I had sacrificed last year by doing all the  nasty, icky, hard-to-do framework that will be necessary to make this year a good one.

Sure, in 2010 we spent about 6 weeks in the hospital, and numerous other days talking to doctors and specialists.  But in 2011 we will FINALLY be getting our heart surgery, and progressing down that road of recovery which will include a much happier, healthier, and more active little Jacob in our lives. Yay!

Yes, 2011 will have it's ups and downs but the experiences from the last 2 months have taught us to be better prepared both emotionally, and physically for what the next several months will bring.

Plus, I've never been the sort of person who lays back and lets life 'happen' to me.  I seem to have a tendency to run after it, catch it, and mercilessly beat it into submission until it bends to my every whim and desire.  KC often refers to me as a charging bull. 

Either way you look at it, I CHOOSE not to freak out this year.  I CHOOSE to make this year a FABULOUS one filled with joy, excitement and a sense of awe and wonder at each and every one of the blessings Heavenly Father sends our way. 

Thank you everyone for the love, support, words of encouragement, and numerous acts of service you have sent our way in 2010. In spite of it all, we have been truly blessed by each of you  and are privileged to call you family and friends. 

I hope that 2011 is just as fabulous for all of you as I'm SURE it will be for us!

HAPPY NEW YEAR!!!

Heart Failure and Reflux are Progressing, Jacob Has Discovered his Daddy!

Just 24 hours after visiting our doctor and being told that Jacob is in excellent health, we were back in her office watching her intently listening to his chest through her stethoscope.

After about an hour of her on the phone with various different specialists they finally concluded that Jacob needed to have his Lasiks increased to 3 times per day (instead of twice) and added another medication, Captopril, to his cocktail of drugs 3 times per day as well.  I'm not sure whether to be happy to stay out of the hospital again, or to be frustrated that he has yet another drug to add to his list of medications.  Plus, I soon discovered after leaving the doctor's office that the drug was so unique (she wants it in liquid form), our pharmacist doesn't even make it and it's a drug that insurance won't pay for so we'll be paying for this drug out of pocket.


This, coupled with the fact that he is now officially unable to handle ANY form of substance orally without gagging or vomiting it up.  This includes his own mucus from his cold, or the .2 ml used to attempt to get his Prevacet down twice a day. It's a frustrating feeling to know that he's getting worse and there is nothing we can do but sit and watch this train wreck happen.  Luckily, we have 1 more week to go until we meet with the cardiologist to set a hard date for surgery.  I'm hoping we can hold out until then.

On the brighter point, it's been so much fun watching Jacob grow physically stronger.  He's holding his head up although he's still not able to keep it from wobbling (baby steps!) and he's beginning to take control of his hands - he spends lots of time swiping at me as I try to give him his medicines.  He's become much more alert as well.  Last night he spent the evening in KC's arms as I tried to get my to-do list done.  All evening he would crane his neck upward and just stare at KC and make the funniest faces as he watched KC talk and go about his tasks.  You could tell that Jake was just loving spending the time in his daddy's arms, playing with his glasses, and playing with his beard.  His personality is finally beginning to emerge and it looks like he will be a VERY busy little boy full of smiles, mischief, and oodles upon oodles of curious energy.  Heaven help us!!! ;)

No News is Good News

Christmas was wonderfully uneventful at the Allred home this year!

Jacob laid on my chest as we watched our children and family open presents. Particularly fun was watching Courtney, our 19-month-old, open presents. Last year SHE was the baby in my arms as presents were being opened. But this year she discovered Christmas in full force!  The entire time we opened presents she was squealing with delight and we'd hear a chorus of, "Oh my goodness!", "Awesome!!!", "So Pretty!", and so much more!  I wish I'd had enough forethought to break out the camcorder for the event.  That little girl was in her element!  And it seems that each and every present she opened was received with the most enthusiastic squeals.  I don't think there was a single present she received that she didn't absolutely adore. Watching Courtney open presents with all of her enthusiasm was absolutely precious!


As for the rest of the day, it was wonderfully low-key.  I had spent much of the few days prior to Christmas secretly holding my breath that Jacob wouldn't suddenly find himself in the hospital again. So when Christmas came and went, I was able to sigh with relief and silently give thanks to Heavenly Father for the little miracles in our life.  Especially since December 26th, I came down with the crud.

So, Monday I dutifully called our pediatrician to have her check on Jacob (with the sheer amount of time I've been holding him, there was NO WAY that little boy was not going to get what I seemed to have caught). In deed, Jacob did have a small cold, but so far there is nothing to worry about and we just needed to break out a humidifier and keep an eye on him. Yesssss!!  I'll take "relatively healthy" any day!


Oh, and he BROKE 10 LBS!!!! :)

Our little boy is now 10 lbs 2 1/2 oz.

Yay!!!

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Miles of Smiles

When all is said and done, today can be considered one of those good days.

Last night I pulled an all-nighter (Yep! Not a wink of sleep!) trying to finish Christmas presents, working on GAINs (assessments) for my sister, taking care of Jacob, and even trying to squeeze in a little bit of house cleaning along the way.  But today was the day we got to spend with the cardiologist going over Jacob's progress and discussing his heart surgery.  This was supposed to be a Dr. appointment that would last at least 2 hours long, so if I was going to get anything done it had to be while the family was sleeping. 

Our appointment with the cardiologist had been set weeks ago and we had even received a packet in the mail reminding us of our appointment, which I diligently filled out in anticipation of our visit. I started getting Jacob ready for the appointment at around 6:30 a.m. - bath, re-dressed his ND tube, got him dressed, packing his diaper bag, etc.  When we showed up at 8:30 a.m. the first thing out of the receptionist's mouth was, "We have you scheduled for 11:30 a.m.".  I looked at her and said, "No.  You have us scheduled for 8:30" and tossed her the paperwork, complete with the scheduled time on the front page, to her.  She looked at it and said, "Oh.  Hmmm".  Apparently they had 'lost' our appointment.  So, they had to scramble to find a way to fit us into their day.  We were told, "You're lucky! The doctor's next appointment is running late so we can squeeze you in!"  Um, no.  Apparently these ladies had no idea what kind of bullet they had just dodged.  I had not slept the night before, I had not eaten yet, and I was on my period.  Strike 3.  You're out!  Out of patience, that is.  With those three factors in play I was in noooo mood to play nice this morning and those ladies were darned lucky they didn't try to make us go home (which is a 30 minute drive, by the way) and have us come back in a few hours. 

So, we sat down and waited to have Jacob's name called......and waited....and wait...and waited.  45 minutes later, they finally called us. We got to weigh Jacob and he was up to 9 lbs 13 oz!!!  Just a few more ounces to go until he reached his 10 lb goal! The nurse did an EKG, which took longer to put all of the stickers and monitors on than it did to do the actual test!, took his blood pressure, measured his oxygen levels, and asked about his medicines.  Then we waited....and waited.....and waited some more for our doctor. FINALLY, he came into our room and sat down to talk to us about Jacob.

He asked us about his medical history and hospital visits, problems with feedings, whether he was getting the RSV shot, etc.  He asked us what our expectations were with the heart surgery, etc. He explained to us that he believed that Jacob's feeding issues were not going to go away any time soon and that lots of people usually have a surgery to close off the esophagus and put a feeding tube in through his stomach before they do the heart surgery, which is a much more permanent solution to his reflux.  I told him that I'd been told that Jacob would grow out of his feeding issues eventually and that I was prepared to wait it out rather than do a surgery to put a tube through his abdomen into his stomach permanently.  He was not too keen on this idea stating that he is an impatient man and that he doesn't like to wait for things that take too long and said that we could probably wait 6-8 weeks and if he isn't improving by then we should get the surgery done.  I still was not sold on the idea of creating a permanent solution to something that may resolve its self in time - especially a solution that resulted in feeding Jacob through his stomach for the rest of his life.  So, I'm opting to be very very patient with his feedings.

After much discussion, the doctor convinced us that it would be in Jacob's best interest to wait another 4 weeks before he gets his heart surgery.  So, we are tentatively scheduled for his heart surgery the 3rd or 4th week of January to do Jacob's heart surgery.  We will be going back to see a cardiologist in 2 weeks to choose a hard date and meet with a surgeon.  And the guesstimate that Jacob will be back in the hospital for about 2 weeks for recovery.

He warned us that this heart surgery would not make Jacob any less fragile and would probably not fix any of his issues. It was only going to fix his heart.  Hmmm.  That's not what he said at our initial visit.  I guess at this point nothing should surprise me and I should take everything with a grain of salt.  So, that's what I'm going to do.  Whether it fixes Jacob's other issues or not, this surgery is still a necessary part of his development and an essential step to his progress. So we will go forward with it.  If it helps with his other issues then BONUS! If not, we'll address each issue after he recovers from his surgery.  After our 20 minute conversation, he changed Jacob's prescription by increasing his Lasiks to .5 mg 2 times per day and sent him down to get an X-ray to make sure his heart hadn't grown too much.  By this time we'd been at the doctor's office for more than 3 hours and had a total of 30 minutes face time with the doctor and his staff.  Ugh.

On the up side, while we were waiting at the cardiologist's KC and I got to watch Jacob laugh in his sleep. It was sooo cute!

Then, later this evening we were having our nightly 'interaction' time where I'd smile, talk, and sing to Jacob to help him interact and begin working on mimicking the facial expressions he sees from me.  Lo and behold, I was grinning and talking to Jacob and he began to give me half-smiles right back at me!  Not just one random gassy smile, but several deliberate half smiles that just melted my heart! I wish I'd had my camera with me!

So, even though my day had a rocky start, I can definitely say that it ended with miles of smiles that makes all the other crud just melt away to the back of my mind.  It's the moments like that which remind me of why it is that I chose motherhood over the military and why I don't regret a single minute of that decision!

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Baby Steps - We'll take em'!

I think we've hit a record....2 days and still no emergency room! Woo hoo!!!! ;)

OK, maybe not a record, but it's been a nice, quiet couple of days filled with baby steps of improvement. I'm sure that this is in no small part due to the fact that our dear friend Melissa (who, by the way has 6 children of her own!) took all 4 of my kids during they emergency room visit (yes! She had 10 children at once!)  and proceeded to keep three of them for 2 days! That left us at home alone with Jacob in a nice, quiet, stress-free house for 2+ days.  I have to say it was nice.  And I think the lack of the usual chaos that usually ensues in  our home seemed to make a difference on baby Jake as well.

Jacob is not only taking 26 ml an hour on his ND tube, but he's taking 1 oz. of formula every three hours (without puking!!!), and even nurses occasionally (also without puking!!).  And to top things off, his gagging has gone down considerably the last couple of days. Now, if we can just get him to hold on a few more days!

We go in to see the cardiologist on Tuesday at 8:30 a.m. to (hopefully) get a concrete date on when his heart surgery will occur.  And, if he has gained as much weight as I think he has the last few days, he will show up at this appointment at 10 lbs +, which is our goal weight for surgery.  Then, after the 2-hour cardiologist visit, we'll spend some time with the Pediatrician regurgitating what the cardiologist told us and coming up with a plan of attack that will address all of Jacob's issues, who will take care of them, the sort of progress we are hoping to see, and what we need to do to see that progress.  I have a feeling that we will be rattling more than a couple of cages on Tuesday.

All in all, I'm excited for Tuesday.  Jake is beginning to improve physically, I think he's met his weight goal in spite of the feeding set backs, and he's even beginning to sleep on his own (i.e. not on my chest 24/7) for a few hours at a time.  It is sooooooo nice!   :)

Baby steps.....we'll take em!

At least he won't get pregnant. Problems with Feedings, and Medication Mix-ups.

I apologize for not posting sooner.  Life around here has been crazy busy...as usual.  So, here's the update to let you know what's gone on the last several days.

The hospital wound up putting a feeding tube into Jacob and he finally got to go home on Saturday the 11th. It became very apparent very quickly that the feeding tube was not all the doctor had made it out to be.  Jacob can, indeed, feel the tube and spends a lot of time gagging, sneezing, coughing, etc.  In spite of what the doctor said, he still ends up gagging until he vomits at least once a day.  This gagging and vomiting continued to get worse and (even without the presence of food in his stomach) caused us to return yet again to the emergency room earlier this week to see if his ND tube had become dislodged.  Luckily the tube was still in place, but the emergency room doctor had a talk with the cardiologist and then sat us down to give us a little friendly advice.

The cardiologist explained that it appeared to him that we were assuming that everything would be 'all better' with Jacob once the heart surgery occurred (which we were - because that is what all the doctors were telling us).  However, in his experience as a cardiologist with patients just like Jacob, we needed to be aware that his problems with things such as the reflux and issues with feeding were not going to go away once the surgery occurred.  He explained that a normal child would probably grow out of the reflux but Jacob is not normal and will most likely need some sort of surgery to repair the issues with reflux.  Normally, they would suggest that he get the reflux taken care of before the heart surgery, but because of how fragile Jacob is, the heart surgery must be done first.  However, the heart surgery cannot be done until he gains weight which is where the reflux becomes a problem.  Thus, creating a bit of a catch 22

for Jacob.  The cardiologist also mentioned that the pediatrician has done nothing to help create some sort of plan for the care of Jacob - she seems to just be reacting to all the diagnosis but not doing anything to help get him better.  He suggested that she needed to become the 'quarterback' so-to-speak and take charge of the situation.  Since she is the only doctor who will be with Jacob long term it is logical to think that she should be the person who creates the plan of attack, coordinates with all of the doctors, and makes sure that Jacob gets the care he needs in order to take care of all of his problems.  This would take care of the problem we have of all the doctors changing the diagnosis of the previous doctors by putting her in control and making the final decision on everything based on all of the information the specialists provide.  KC and I both agreed and promised the emergency room doctor we would talk to the pediatrician.

The next day, I called her office to discuss the fact that Jacob had been completely removed from oral feedings because he couldn't keep the oral feedings down.  The only problem is that it took 2 hours for a nurse to call me back and when she did call me back I was informed that my doctor was not in that day and that she would forward the information onto the doctor the next morning.  What?!  I was supposed to let my 8 lb baby STARVE because my doctor wasn't in????  Nope.  I don't think so.  So KC and I worked the numbers as best we could, upped Jacob's ND feedings per hour to reflect the lost calories from the oral feedings and crossed our fingers that we weren't hurting out baby by messing with his feedings.



I finally got to talk to my doctor around 2PM the next day.  Yes. Almost 24 hours later - and 36 hours since his last oral feeding I talked to my doctor.  I explained to her what we had done, and the fact that we were not happy that we had to wait so long on a matter that had sent us to the hospital twice in the last two weeks. She agreed and said that she'd talk to her nurses about the issue and have them call her at home, since this is what they did on other matters with other patients.  We agreed to meet on the 21st after I meet with the cardiologist to discuss Jacob and his feedings in more depth.

So, just when I thought things were getting better and calming down, today my husband KC came home and wound up having a 104.8 degree temperature.  Soooooo off to the emergency room we went again.  I got to see KC hooked up to many of the same machines that Jacob had been hooked up to - IV, oxygen, heart rate monitor, respiratory monitor, breathing monitor, blood pressure cuff, oxygen level monitor, etc.  He even got a lumbar poke to check for meningitis like Jacob did.  It was a bit surreal.  Somewhat eerie.  And I'm VERY VERY happy that they ultimately couldn't find anything wrong with KC and we were home a mere 6 1/2 hours after we entered the emergency room.

While we were at the emergency room, I had Elisha home with Courtney and Jacob and realized that this was not an acceptable option for her (I can barely take care of the two children on my own during the day - how was my 15 year old supposed to do it?). Luckily, one of her friends' moms is a nurse and was willing to take all four of my kids while we were in the emergency room and take care of Jacob and give him his medications while I was with KC.

When I finally came to her home at 11 p.m. to pick up Jacob they packed everything up including his medications.  As they were packing, I noticed that she had a purple box of pills in the diaper bag.  I asked Melissa if these pills were what she had given Jacob (he was supposed to take 1/2 a Previcet pill twice a day) this evening.  She said that Elisha had given him his pill, so I looked at Elisha and she looked at me and said, "Yeah".  I looked at both of them and said, "Well, at least we know he won't be getting pregnant!"  Elisha had taken my birth control pills rather than the Previcet and had fed them to Jacob!!! :)

What a perfect ending to another wonderful day!  But at least THAT is one boo boo we can laugh about!  :)

Failure to Thrive and NG Tube. A day in the life of a baby with Down syndrome

I'm beginning to wonder if my baby has a tendency to leave the hospital worse off than when he arrived.

This morning after researching all of the heart meds Jacob was on, I discovered that there were some drug interactions that were not being followed. However, because Nathan (11 year old) and Courtney (18 month old) were up last night and this morning puking, I was unable to run down to the hospital before they gave Jake his next dose of Digoxin. I did call the nurse up and expressed my concern and just about got into a rumble when she dismissed my concerns and told me that she'd forward the information onto the doctor after I pressed the subject further. Not one to be patronized and swept aside, I called our local pharmacist and talked to him about the medications and possible interactions to be considered and found out...the nurse was right.  I was overreacting. Although the Digoxin is not supposed to be taken with an antacid (he's on a form of zantac), Jake's particular medicine did not register in the pharmacist's computer as a potential risk with the digoxin, and therefore should be safe to use.  DARN IT!  I hate it when the nurses are right. 

So, I went down to the hospital and talked the nurse, apologized, and we had a good heart-to-heart about what I'm looking for and needing from the care of Jacob and all of the information they are providing me as a parent regarding his care.  And to her credit, Erin DID talk to the doctor after our phone call about my concerns and had his zantac changed to a different medicine that they were sure would not interact poorly with Jake's medicine. Darn it again!  I may just have to like this nurse...in spite of my irrational need to be mad at everyone right now.

I got to spend another 4 hours waiting to talk to the doctor. While waiting, I discovered that Jake threw up another 3 times while I was gone the night before, and did not gain any weight overnight.  He'd done some pretty BIG vomits too, so he'd gone through every article of clothing as well as his sling and they had jimmy-rigged something that would have to do until the sling was laundered. 

I finally got to talk to the doctor around 3 PM, talked about the drug interactions and cleared the air with her as well. We discussed my need for a medical 'cheet sheet' and she asked why we weren't enrolled in the Sunflower Program - I guess if I talk to enough people about the program SOMEONE will get us signed up! lol We discussed his feeding and the spitting up, the results of yesterday's tests, and the tests that she wanted to do tomorrow. Again, she reiterated that his problems were due to reflux.  I again explained that there was no question that he had reflux.  I just needed to know if Jake just happened to have really bad timing and the reflux kicked in at the same time he took his medications, or if the medications were the reason he was having reflux. 

Dr. Starr said that they were going to do a 90 minute test tomorrow that would track how Jacob digests his liquids and how quickly his stomach drains the liquids into his intestines.  She said that if there was a problem with draining they would have to give him a medicine that would help him metabolize his food faster.  But, if there is nothing wrong, and he continues to throw up his foods, they would have to take a tube, place it down his throat, past his stomach and place it directly into his intestines so that they can avoid the reflux and get food into Jake's body so he can begin to gain some weight. Then, as soon as he breaks the 10 lb barrier they will make arrangements to have his heart surgery done.  Hmmmm that heart surgery seems to be screaming to reality much faster than I had anticipated. We've gone from Spring (April-May), to Jan-Feb, and now maybe as soon as the end of this month.  Wow.  I need to wrap my mind around that one.

The one thing I have noticed though through this whole 'reflux' thing is that when I hold him in my arms for feedings and after feedings he almost NEVER throws up.  So, in an effort to avoid a feeding tube, I've decided that it's time to go back to all-nighters in the hospital - holding Jacob in my arms all night long - so that he can sleep without vomiting and (hopefully) get a clean bill of health here in the next couple of days.  However, that also means that I'll pretty much be committing to holding him (or having him held) all day long until his surgery in order to keep his food down (sigh), but  at least he'll be sleeping, not puking, and we'll be able to move that much faster in the direction of surgery and (hopefully) a much healthier baby Jacob.

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4 Things Things to Be Happy About When My Child is Fighting For His Life in the Hospital

There's a long-standing joke in my family that one must NEVER EVER EVER pray for patience.  Because when they pray for patience, God decides the best way for us to learn patience is to give us some massive trial in our lives that we have no control over until we're beaten down enough to realize that the only thing we can do is PATIENTLY endure. 

Hmmmm.  Apparently I've been talking in my sleep again. 

I apologize for last night's ranting.  I should never blog at 4 in the morning.  What was I thinking?!

Yes, a few hours under my belt DID do me some good.  I was able to get about 3 1/2 hours of sleep before heading back to the hospital and relieving KC of his all-night shift with Jacob.  And when Jacob was in my arms, it only took seconds for me to realize that ultimately, all was right with the world again when we were together - regardless of where we were.  Having him snuggle up to me and contentedly sigh and fall asleep has a way of sapping all of the anger and frustration away.  We spent the entire day just sleeping and snuggling with the occasional interruption of those pesky medical workers earnestly trying to find out what was wrong with my baby boy.

We met with Ultrasound, where they strapped Jacob to a board, had him drink barium - laced sugar water (which he LOVED by the way - he had a fit when they took it away from him before he finished!) as they watched the flow of the barium down his digestive track to make sure that all of his anatomy was in tact, not twisted, and working properly.  Clean bill of health!

We then met with Radiology where they laid him on a table and gave him more liquids to check for reflux and to see if the liquids were coming out the "other end" in a timely manner.  Anatomically, Jacob looked fine, but the radiologist said that Jake had reflux all the way up to his mouth.  Soooo, to add to baby Jake's list of ailments we now have reflux.  But I'll take reflux ANY DAY over something like a twisted colon, or misplaced intestinal tracts, etc. 

With a diagnosis of reflux in hand, we met with a speech therapist (yep! the infant got to meet with the speech therapist!) who sat down with me during several of his feedings during the day to assess his current feeding habits and then to show me a modified feeding regimen will help inhibit all of Jacob's reflux so that he can keep his food (and medicines) down and his weight up.  The result? We now have Jacob on a prescription formula (who know that they even had prescription baby formula!) with a page-long description of how we are supposed to feed Jacob (How to mix the formula, position to feed him in, position for burping, when to change his diaper, position he's supposed to sleep in  and so much more!) They brought in a wedge and sling for his bed (If I can ever figure out how to download pics from my cell phone I'll download the picture of him in his sling - he looks like he's in a straight jacket!!) for sleeping. So, it looks like rather than waiting till Christmas to kick Courtney out of her Crib (she's getting a "big girl bed" on Christmas) - we'll have to kick her out early because the wedge and sling definitely won't fit in his cradle. 

Through it all though, I just try to remind myself that this visit isn't really life-and-death.  It's a little hiccup that can be quickly addressed, managed, and we'll be back on our merry way in no time.  In fact, once we'd met with the speech therapist the next two feedings were spit-up free!  That is until the night shift nurse came in, listened to us give her the run-down of what we were doing to manage his vomit, then ignored us and gave him his full dosage of Dijoksin and Zantac rather than giving him mini-doses to help him digest better.  Who'dve guessed that he'd throw up EVERYTHING 30 seconds after she squirted it into his mouth all at once? (sigh)  Luckily that will be the only dose she gives him before the next shift change. Hopefully we can get someone who will listen to us, what we are doing to deal with the vomiting, and try to work with us rather than doing it their way and having Jacob reap the consequences.  Plus, we now know what's wrong, and have the tools necessary to manage this problem at home.  Its just a matter of him gaining enough weight and keeping enough formula down to get him out of the hospital so we can begin doing what we know works for him rather than having to fight all of the various medical personnel at each shift change.

OK, so I REFUSE to end ANOTHER blog on a negative note, so it's important for me to say that yes, life right now is hard.  Yes, Jacob is going through a rough patch.  Yes, this has been an incredibly emotional experience.  But I've got to look on the bright side too.

1. I've got an incredibly supportive husband who has done nothing but take care of our family, advocated for Jacob time and time again, and gone above and beyond the call of duty when it comes to taking care of me, our children, our home, and everything else that's been in upheaval the last 6 weeks.  I'm so blessed to have him as my rock right now. 
2. KC's work has been such a tremendous blessing. He's had the ability to take almost a month off of work to help out  and be there for Jacob while he was in NICU and PICU.  Where else could a person do that and know that he will still have a job when he comes back?  We've been so blessed to have Avista, the support of their employees, as well as the incredible insurance that we will be making very good use of in the upcoming months and years. 
3. I'm so blessed to have the family that I have - both on my side and on KC's side.  What a huge support system we have - both physically, emotionally and spiritually.  I am speechless at the outpouring of love and help that I've received from my family through prayers, babysitting, transporting, helping out around our home, meals, phone calls, blessings, e-mails and so much more!  The support we have received from our family has been unparallelled.  We've been so blessed!
4. Where the family left off, my ward and our friends kicked in.  All I can say is "Wow!".  The meals, the phone calls, the rides for the children, the help around the house, gifts, friendship, shoulders to cry on, prayers, cards, and so much more.  I'm speechless. 

I've had more than my share of opportunities to see the other parents in the hospital visiting their children.  How lucky I am to be able to care for my child and not worry about the other three at home, or my home, or my husband, or any other responsibilities.  We have such a massive support system that we can rely on when necessary.  And so many people have little or nothing to rely on in their times of need.  I feel almost guilty for being blessed with so much by so many.  For all of you I am abundantly thankful.