Jacob - A Little Brother in the Truest Form

I've been updating many of my blogs over the last several weeks, and it's given me an opportunity to walk down memory lane.  Some of those memories were filled with laughter.  Others with sadness and tears.  But the strongest vein of thought I felt throughout the months and years with Jacob thus far has been gratitude that Jacob is in our lives.

Yes,  my 4 1/2 year old is stubborn, devious, likes to dump things on the floors...or beds...or behind couches...you get the idea.  But he's also a lover, a giggler, a hugger, curious, sweet, devoted, and constantly trying to show love toward me.  He's wise beyond his years, and yet impulsive as a one-year-old.  And...Jacob is a little brother in the truest form of the term.

Jake is only 18 months younger than Courtney, but only half her size.  So, why is it, that every time she walks in the room, he either A) follows her around like a puppy dog   B) Tries (and usually succeeds)  to tackle her.  That little boy LOVES to hear his sister scream and/or squeal.  It's like his very existence depends on how loud Courtney yelps.

At times it's frustrating, and other times, I can't help but chuckle.  It's one of hundreds of little reminders for me that, although Jake has Down syndrome, he is more like the rest of us than he is different.

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Gemiini Update: Jacob's Speech is Progressing

This is my monthly post on Jacob's speech progression using Gemiini.

Admittedly, we haven't been using Gemiini as often as I'd like.  Jake's older sister had heart surgery three weeks ago, so our focus was on her for much of April.  However, whenever possible, I would sit down with Jake and go over the videos.  Plus, they have an app that we've downloaded that Jake can click on without requiring me to log into their system to watch the videos.  I've caught him several time with his Ipad watching those videos and making the sounds and signs to the words.

I've seen a lot of progression in Jake these last several weeks.  He's progressed from using signs and a series of grunts to babbling with consonants, and even trying to use words.  This last week he pointed to an object and said "there!" (which sounded more like 'dehyr', but whose complaining?), and last night he was doing the da-da-da thing.  What a leap from absolute silence. 4 1/2 YEARS we've been trying to get Jacob so say SOMETHING, and now it's happening.  Is it bad to say there are days I want to shed tears of joy at this development?

This morning we were on again.  He only managed to watch for 10 minutes, but he did all the signs, all of the sounds associated with the animals, and was attempting to say the words.  He'd either manage to say the beginning or the end, but not the entire word.  They're baby steps, but for me they are HUGE.  I have hope.  And there's nothing better in the world than having hope for your child and his ability to communicate.

3 months after heart surgery - Jacob's progress

Holy Cow! Has it been almost 2 months since my last post?! Goodness!  I guess no news is good news?  Well. Sort of.  It does mean that Jacob is doing FABULOUSLY!  Surgery has now officially been deemed a complete success by all of his doctors, he is now weighing in at a hefty 15 lbs 11 oz. and is attacking all of his milestones with an unsurpassed vigor!



At 6 months, he is still in the 10% range in size/weight of a normal child, but is about 50% for a child with Downs Syndrome.  Which is fine with us.  All I care about is that he's healthy and happy.  And happy he IS.  Our sweet little munchkin never seems to do anything but smile. 

Jacob is now part of the zipper club!

(We've discovered he LOVES bath time!  He loves to kick and float!!)



Unlike his big sister, Courtney, who is more like a freight train around the house, demolishing everything in her path, Jacob is our quiet little angel who plays by himself, smiles, giggles, and just takes in everything life has to offer.



He's now rolling over, scooting (on his face - his arms aren't quite strong enough to handle the weight of his body), grabbing things and shaking them, and sitting with some help.  But his all-time favorite thing to do is to stand up while holding someone's fingers.  He's just so proud of himself!!  You can see the joy and jubilation in his eyes at the accomplishment alongside the thirst for more Independence.  It may take Jacob a little bit longer to sit, crawl and stand on his own, by I have this feeling that once he has them mastered, there will be NO holding him BACK!

Blood is Thicker Than Water

Courtney has always been a rough-and-tumble girl.  From the minute she was born weighing in at 8 lbs 15 oz.  the nurses described her as "sturdy".  She has lived up to that name in every way.  She towers over her peers, she is sticky sweet if it suits her, and down right ornery if it doesn't. It was immediately apparent that she was a strong-willed, spitfire that wouldn't let anything get in the way of whatever she wanted whenever she wanted it.  Even at 20 months, she tests the limits of my patience and intellect as I try creative, non-violent ways to reign in her semi-devious, stubborn, and precocious personality. 

Many a night have I sat up wondering what I can do better to teach her to use her super powers for good rather than evil.  I worried even more when Jacob was in my tummy waiting to be born.  Knowing what I know about Courtney I often wondered how she would react to going from "Princess" to "Middle Child".  I worried about how she would handle having so much of our time diverted from her to Jacob and if she would become even more of a handful just to get more of our attention. 

Luckily, we were blessed with one of life's small miracles.  About 1 month before Jacob was born our rough-and-tumble 'base-jumper' began to take an interest in babies.  All of the sudden she decided that rather than jumping spread eagle off our kitchen table, she wanted to carry around her dolls and sing them songs.  As predicted, when Jacob was born she spent very little time with KC and I. We spent weeks in the hospital and they prohibited visits from children under 3.  Courtney didn't even get to see her brother until he was 10 days old, and then only for a day before he returned to the hospital. Then she waited another 3 weeks to see him until he came home again.  That 1 day was all she needed to make a miraculous change.  She began asking for her brother on a daily basis, and ramped up her maternal nature with her dollies.

By the time he came home the second time, she was checking her 'babies' toes for oxygen levels, changing their diapers and being sure to use up all of our wipies to ensure that the dollies' bottoms were nice and clean, feeding with bottles, rocking them to music, and rarely letting her 'babies' out of her sight.  When her little brother showed up, Courtney was a very experienced big sister.  She's more than  happy to hug and hold her brother, bring diapers, help with changings and choosing out clothes, and making sure that he never ever cries.  Because if he does (even in the middle of the night when she's in a dead sleep) she begins to cry and panic, worried that her little brother might be in pain. 

Yes, our rough-and-tumble little Hellion has had a change of heart.  She has metamorphesized into a vivacious, strong-willed big sister/protector that has learned to use her powers for good.  She willingly and lovingly spends her days watching over and protecting her little brother to make sure that he is never in pain and has everything he needs to be happy.

KC and I have often wondered for what purpose Courtney was brought into our home at such a time in our lives - 10 years after the birth of Nathan, especially when we were so sure that we could have no more kids.  Then, to have not one miracle babies but TWO?  Just spend a few minutes in the presence of Courtney and Jacob and it won't take you long to realize that she is here to pave the way for her brother, to protect him, and care for him during his journey through life.  And for a job as important and demanding as that one, she has just the PERFECT personality and mindset for the task.

I guess KC and I will just have to give her a little slack and try not to temper her personality quite so much then, won't we?

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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Bang! Bang! You've Been Shot! - RSV shots and immunizations

Why is it that everything seems to take four times longer than it used to 2 years ago? 

2 Years ago, I was working out 3 1/2 hours a day, lost 75 lbs, my business was on tap to break six figures in sales and I could fill most of the orders in 3-4 hours a day, I was in the Young Women's Presidency, carting  Nathan and Elisha to all of their various activities, and a full-time mom.  Now, 2 years (and 2 more children) later, there are days when I'm lucky to get changed out of my PJ's before KC comes home from work in the evening.

Today was one of those days - and I had KC home helping me out!  It was shot day for Courtney and Jacob.  Courtney came first.  Because of Jacob's birth in October, we missed Courtney's 18 month visit (and shots) with the pediatrician.  When things finally calmed down, it became very apparent that I couldn't put off immunizations forever and a date was set.  When we pulled into the doctor's parking lot this afternoon, Courtney assumed it was another "Jacob visit".  When I told her that this visit was just for her - today was "Courtney Day" she squealed with delight!!!  I didn't have the heart to tell her she'd hate me by the end of the visit. 

When we unstrapped her from her car seat, she quickly ran to the front of the office building where they have large buttons for persons with disabilities to push in order to have the front doors automatically open.  Pushing the buttons and watching the doors open is one of Courtney's favorite things to do at the doctor's office.  So, she immediately ran to the doors, pushed the button, ran through the first set of doors, pushed the second button and ran through the second set of doors.  Then, she ran to the other end of the lobby where the other children were playing and cozied up to one of the kids like they had been friends for decades.  It was the cutest thing!  We let her play in blissful ignorance until the nurse called her name and Courtney proudly ran to the nurse to present herself to be whisked off to her room.

Once there, she new the procedure.  We undressed her and took her to the scale to be weighed (nearly 30 lbs), she laid down to be measured (35 1/2 inches), and then we brought her back to her room to wait for the doctor.  As we were waiting, I made the mistake of telling Courtney that Daddy and I had had our shots yesterday and I showed her the hard, red bump on my upper arm from the flu shot.  One look at my arm and you could immediately tell from Courtney's face that she knew EXACTLY why she was there.  Her face changed to shock and horror, she grabbed her thighs (where past needles have been inserted for other immunizations) and ran screaming to the other side of the room.  It was all down hill from there and she didn't even attempt to be sweet for the rest of the visit. 

She took the 4 shots to her thighs like a trooper and screamed for only a few seconds, which was quickly stopped by letting her know of the Allred family tradition:  She who gets shots also gets ice cream!!! 

She quickly got dressed after that revelation, we stopped off at another office for Jacob's first Synergis (RSV) shot - 1 shot in each thigh (ouch), once a month for up to 5 months - picked up Nathan from school, then stopped at the local Dairy Queen for Courtney's much anticipated ice cream - Chocolate extreme blizzard!! 

Once she had some ice cream in her belly, those nasty ol' shots were a long lost memory and she was onto bigger and better things like, say, playing in the melting snow!!! :)  By the time we'd made our 3 stops, it was already nearly 5PM and our day had slipped away.  Hmmmm.  I guess I'll try to be productive again tomorrow.

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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!  :)

Re-Defining Normal. Adding an NG Tube to Combat Reflux and Failure to Thrive.

Today I went to the hospital optimistic that today would be the day that Jacob would get to come home (again) to us.  Even though he had been throwing up for the nurses, I had not had the same experience since we'd been in the hospital and I was using the speech therapist's 37-step (OK, slight exaggeration..but only slight) feeding process for Jake.  It was my goal to show the doctor that, even though Jake has been throwing up for the nurses, he has not been throwing up for me because I have the time to devote to holding him for the hour he needs after his feeding to keep his food down. 

All went well up until 5 minutes before the doctor came in (seriously, we were only 5 minutes away from redemption!).  Then, 30 minutes after his afternoon feeding, I moved slightly, putting Jake on his back slightly and causing him to begin spewing all of his formula all over the room.  In his defense, I HAD moved him in the wrong direction.  And, from an entertainment perspective, it was AMAZING to see all of that formula spewing out of his mouth - I think he projected about 3 feet a couple of times.  From a concerned mother point-of-view, I couldn't help but deny that 1)  I didn't have the magic touch after all and 2) His vomiting is actually getting worse instead of better.

I sat down with the doctor for about 30 minutes and reviewed the options for Jacob.

1) We can insert a tube down Jacob's nose, down his throat, past his stomach and into his intestines.  This tube would give him the nutrients and the food he needs to gain the weight necessary to have his surgery, which she estimated would be about 2 months away if we use the feeding tube.  A few of the up sides included that there would be no cutting: they insert the tube through normal channels and would use a flexible tube that would not be uncomfortable for Jacob, but because it's easy to insert it is also easy to remove, so we'd have to keep a close eye on him to make sure he doesn't pull the tube out of his nose.  It also means that the reflux will not be an issue because they will be bypassing the stomach all together and going straight to the intestines.  So the throwing up will not be an issue while the tube is in. On the down side, it requires a constant drip, which means we can't just feed him a dose and be done for a couple of hours.  He's being fed all the time and may even forget how to suck if we don't continue to feed him little bits via the bottle.  But it would also mean that he might be able to come home as soon as tomorrow afternoon if he proves that he can tolerate the tube.

2) We could put him on ANOTHER medicine.  Dr. Moon explained that the medicine would help the stomach drain quicker, but it wouldn't completely alleviate the reflux issues.  She also informed us that the medicine they had in mind was recently black-boxed with a warning that it may cause permanent brain damage in some children. Because I STILL believe that 80% of this current problem is a result of his heart medications, I'm not comfortable with introducing yet another medicine into his cocktail of drugs - complete with interactions, side effects, and who knows what other effects it could have on him.

Jake with his NG Tube, FINALLY sleeping soundly

3) The third option she presented is that we could stay in the hospital and continue to try to get Jacob to increase his endurance until he can consume enough of the formula and keep it down on his own.  However, that means that we have to stay at the hospital for an unknown amount of time until he reaches the goals that the hospital has for him.  All I could think about was my dear friend, Marla, who was having feeding issues with her son in the NICU at the very beginning and how it took them 1 month before  her baby was consuming enough consistently enough that she could leave the hospital. 

KC and I talked about it and it was pretty apparent to both of us that the feeding tube was the lesser of the three evils for us. So, we're  hoping that tomorrow morning, Jacob will have the tube inserted and that he will be able to come home to us in the evening complete with his very own feeding tube and (I'm sure) many more instructions regarding his care, etc.

This, of course means that we will have to redefine what is normal for our family for a while.  We'll be looking at home health-care workers coming in to change and care for his feeding tube and food, more doctors visits, and being hyper vigilant to make sure that neither Jacob, or his dear sweet sister Courtney pulls the tube out of his nose.  Rather than bringing Jacob home to begin his life in our family, we will be bringing him home to focus on preparation for his heart surgery.  There will be no time to relax and just enjoy him. 

I guess now we hunker down, try our best to get him out of the hospital and STAY out of the hospital, and begin the count down until he can get his heart surgery sometime this winter.

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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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