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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PTSD and Elisha's heart surgery. All in the day of a life of the Allreds.

Tuesday at 4:00 pm. (after nearly 6 hours of waiting) I was at Sacred Heart Medical Center in Spokane, Washington entrusting the life of my oldest child to the cardiologist for heart surgery.  This was the second child I've had endure heart surgery.  I didn't like it any more the second time around than I did the first.

In fact, this entire experience has brought round a pretty good case of PTSD, and an enormous amount of retrospection over Jacob's life during the past 4 years - not to mention many prayers of thanks for Elisha's.

I couldn't help but remember the day I was at the OBGYN and he told me Jake would have Down syndrome and a pretty significant heart defect.  He asked me if I wanted to abort.  The answer was immediate and adamant.  "Absolutely Not!".

As I prepared for Elisha's surgery, I often wondered how many parents have aborted a fetus merely on the basis of a heart defect.  Their worry that the child would not have a normal life, that it would be riddled with pain, sickness, or inability to be like the other kids.  I know pain was my first thought with Jacob.  How much pain would he be in? Could I, as his mother, handle watching my child with an enormous hole in his heart, suffer as a child?  Would the operation hurt?  Would he survive. After all, it IS his heart.  It's not like they're fixing an ingrown toenail. What would his quality of life be?

Those first three months with Jacob were as bad as I had envisioned them to be.  He was soooo very sick. He spent nearly every night of his first three months of life in the hospital, and I would sleep with him on my chest so that he could be upright and breathe easier.  He was so sick and listless his therapists were afraid to touch him and refused to treat him until his heart was fixed.

What I can tell you though, and I'm sure you've deduced from past and recent posts, is that the moment he had his surgery, a light flicked on and he turned into this crazy-busy fantastic little boy who laughs and giggles until everyone else around him is laughing and giggling.  He's smart, and mischievous, and adorable, and stubborn, and everything I could have possibly hoped and dreamed for in a little boy.

Now I look at Elisha, who apparently has apparently spent her entire life with a rather large hole in her heart as well.  How the doctors never caught it, I'll never know.  The first cardiologist diagnosed her with a large PFO (Patent Foramen Ovale).  On a scale of 1 to 5 (5 being the largest), he was pretty sure she had a 4 or 5.  And when she bore down (flexed her stomach muscles), there was a massive amount of shunting from the left atrium to the right (upper two chambers), almost as if there was nothing there to hold the flow of the blood back.  A second opinion proved that she didn't have a PFO, but an ASD (Atrial Septal Defect), which means the wall of the atriums didn't fully close and there is a permanent hole in her heart that will never (obviously, because she's 19!) close on its own.

How did this hole affect her growing up?  Well, she had a few bouts of passing out, and she was constantly tired.  She had little or no stamina during sports.  But you know what else?

Elisha was also ASB president, All Conference Volleyball, 2-time state champion thrower for track, All-State/All-Northwest choir, went to state 3 times for choir, and is now a Division 1 track athlete.  Did the hole in her heart affect her.  Yeah.  It did.  If it didn't we wouldn't have been taking her to the doctors and found it in December.  But the things she was able to accomplish in spite of it, are amazing. You can check out ELISHA's webpage here.

I wonder how many families choose to abort their fetuses because of a heart defect and never realize what an amazing opportunity they're missing, and how normal a child's life can be in spite of a congenital heart defect.  I sit here and shake my head.  What a loss. And how lucky I am to have had faith and know that everything would be alright.

With two children having heart defects, I'm not sure if their connection is genetic or just really really bad luck.  But what I do know is that there was a lot to be learned from the eperience.  Not only for myself, but Elisha has learned and matured from it as well.  It puts life into perspective quickly.

We have several moments to pause and think hard in the last few days. Especially when her heart rate plummeted during the initial IV insertion from 78 beats per minute to 35 and the room went from 1 nurse to 4 in seconds.    And again when her doctor came to us after her surger and mentioned that her heart had stopped for four seconds before they'd even begun the procedure.  All the sudden even the most invincible person becomes mortal. And it scares you.  It definitely scared me.  And it prioritized my life quickly.

After much consideration, Elisha and I have decided to start a non-profit called Allred Hearts.  It's for families affected by congenital heart defects.  If you walk the halls of Sacred Heart, you see entire levels dedicated to people with heart issues.  And having two in our family with a CHD (Congenital Heart Defect) we are acutely aware of how it affects a family and how much help and support a family needs during the process.  The night before her surgery, Elisha helped me create the logo for Allred Hearts.

Our family has been through it all.  Open heart surgery, a baby with surgery, a college student with heart surgery, being denied by insurance, the uncertainty of life with a CHD, and the promise of life after heart surgery.  We've felt the pain, the stress, the hope, the love, and revelled in the little moments that such experiences help us to realize and appreciate.  We hope to share that with others.

Please, help us to help others.  Show your support to Elisha, Jacob, and our new endeavor, by clicking on the logo Elisha created, and helping us to create the non-profit.

Thank you, everyone, for your love, support, prayers, and help over these last few months (for Elisha) and years (for Jacob).  We could never have done it without the help of such a great community of friends, family, loved-ones, and KC's work, Avista.  It has been the thousands of acts of kindness that have helped us get through so many trials.

Many thanks,

KC, Susan, Elisha, Nathan, Courtney, and Jacob Allred.

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! :)

Birthday Bliss

It's hard to believe that Courtney is already two years old!

Our little princess/Roller-derby wanna-be has been nothing if not vivacious and full of life! 

When we first found out about Jacob, we weren't sure how she'd react to the "competition" but she's taken on such a sweet and loving presence around him (as long as she's paying attention and doesn't accidentally step on him as she's running around screaming and tearing the house apart in 5 seconds flat!)

This year was the first time Courtney really had a chance to get into the spirit of her birthday.  So we invited our friends, the Carpenters, and Les & Karen (KC's brother and his wife) over to celebrate the big day!

Everyone got into the "Princess" spirit!

Down Right Living: Happy Birthday Courtney!

Courtney loved all of her presents, all of the attention, and all of the yummy food!  Aside from her squeals of delight and her saying things like, "That's AWESOME!", it was a low - key birthday filled with those we love the most! Thanks to everyone for making it a success! :)

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!

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!!!

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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