Thursday, May 31, 2012

the cardiology visit

Yesterday was Leo's first visit to the cardiologist, but unfortunately not his last.  It wasn't all bad news, it just wasn't news to put him totally in the "all clear" we had hoped for!

After a great EKG and echo, we found out from his cardiologist that Leo has a Patent Foramen Ovale. This means he has a hole between the top left and right chambers of the heart which has not yet closed.  In some cases this area closes before birth, and in other cases it closes within the first two years of life.  In yet some other cases, is doesn't close at all.  Apparently it's common and most individuals who have this don't even know the hole exists as there are usually no symptoms.

The only concern, in Leo's case, is that the hole in Leo's heart is actually measuring a little larger than the typical Patent Foramen Ovale. This puts him at a small risk for problems with leaking between the two chambers, especially if the hole increases in size. Because of that, she wants to check his heart again in one year.

So we wait...

Tuesday, May 29, 2012

the past 2 Weeks (that seemed more like a month!)

Has it really been only two weeks since I last gave an update on what Leo has been up to?  Because I swear it seems like it's been at least a month!  Well anywho.... on to the update...

I left off at the scene where Leo took on the heart/apnea monitor.  He has done a great job sporting the device, although he's given mom a few scares with the alarm going off in the car. On May 15, he successfully had 2-month immunizations, followed by a fever for two days (typical). On May 16, we visited the pediatric gastroenterologist to have a little talk about the reflux issues and make some medication decisions. Can I just say how much I love Dr. Whitney?  I've met two other families since that visit whose children see her, and she's wonderful! There was a medication our pediatrician was considering (in addition to prevacid) for Leo's reflux issues, but a possible side effect is torticollis (where the neck muscles spasm and cause a twisting of the neck, with the head tilted to one side). Considering Leo's low muscle tone and what it would take to overcome a side effect like that, Dr. Whitney decided the risk outweighs the benefit. Instead, she made a plan to limit his feedings to 3 oz maximum. Two weeks later, I can say it's working great! He's still eating every 2.5 to 3 hours, but there have been a few times he's crammed all that eating into daytime and slept through the night... so at least he's being a trooper about it!

Our next stop, on May 18, was Leo's first visit at the Children's Medical Center Down Syndrome Clinic. It was a long day there, but we met some wonderful staff who will continue to be a part of his treatment for years to come and obtained some really useful information and resources to plan ahead for his needs. Totally worth our time! It both amazes and inspires me to see individuals who have gone into the medical field working with children or adults with DS because they have a child with DS. It's awesome for us parents, because it makes them an even better resource. Needless to say, there were a few of those parent/professionals that we met through our visit at the DS clinic.

Last but not least, Leo had visits last week from our wonderful ECI (early childhood intervention) specialists - Heather for developmental, and Kaylee for speech (feeding). We are excited to report that he's doing so well with feeding, we get to scale down to Kaylee visiting once per month for now. He's also doing so well with movement that we're increasing Heather's visits to twice per month. To top it off, we'll be adding the ECI Physical Therapist into the mix starting in June. Fun stuff, I tell you!

As for upcoming fun stuff?  Tomorrow, we visit the pediatric cardiologist.  The only "heart work-up" Leo has had was through my prenatal sonograms. Although there were no heart defects seen prenatally, and none "heard" on exam since he's been born, just to be thorough he'll have an echo cardiogram tomorrow. About half of children with DS are born with a heart defect, so being thorough is a good plan! 

One other big accomplishment this past month?  Need I explain....

Isn't that the sweetest thing? 

Another "upcoming" fun, non-medical thing... Leo will be a participant in a little project for "Joel & Friends" this Friday. I'll put more info about it in the blog this weekend, but for now... go check this out and consider supporting the project:  the Joel Project (Joel & Friends)
Also, go to facebook and like this page:  Joel & Friends (on facebook)

In addition to all of Leo's recent activities, he has experienced his big sister completing middle school (she's so ready for high school!), and watched his big brother doing an awesome job Potty Training.  What a two weeks it has been for our little guy!

Rolling right along....

Love, Joyce

Sunday, May 20, 2012

Down Syndrome is no pity party.

Today brought me a sweet reminder... about how I used to feel about Down Syndrome, and how that has all changed.  First, let me back up a bit...

Probably like some of you, I didn't grow up around anyone with DS. Those children weren't integrated into my classes as a child or teen, and anyone with that diagnosis was someone else's child. I had so many misconceptions about DS that I never knew were wrong until it became "my child". For one...

"Having a child with Down Syndrome is good reason for a pity party."

I kind of had one when we first found out Leo has DS.  I felt like people should feel sad for me.  And I sure felt sad for myself! Then one day, I shared our news with a family who already has a child (teenager, for that matter) with DS. Their reply? "Congratulations, that's awesome!" The weird thing was, they really meant it!! Honestly, I didn't understand what in the world would make them reply like that.  As time went by and I tried to process things for myself, I started researching the web and found a section in the Down Syndrome Guild of Dallas.  Parents and siblings wrote letters about having a child in their family with DS and they all talked about how wonderful it was, and how it made their lives so much better. You know what I thought?  "They must be fooling themselves... there's no way someone could be so happy about it! That has to be one of the hardest things to ever live with and they're just trying to make it look like they're happy."

Then along came Leo. And almost right away after he was born, I realized how wrong I was. How did that happen?  Simple... because he's my son. Sure, people can say "I'll love my child no matter what"... but when you find out there positively will be something different about your child, there are many fears that come along with it.  Those fears can make you feel, at first, like the diagnosis is a horrible thing that will be hard to live with. Then your little bundle arrives and everything changes. No matter how different he/she is, no matter what defects they may have that need fixing, no matter how many special needs you might be faced with... this little bundle melts your heart and steals your love like no other. Suddenly, you feel so blessed to have been chosen to care for someone so very special.

So back to my reminder today?  We attended the New Parents meeting for the Down Syndrome Guild of Dallas.  It's a wonderful support group for parents, our children with DS, and their siblings. I went to their quarterly research meeting (another post I shall make in the future...) last weekend, and today my entire family attended this special gathering together. We had the chance to hear a speaker (talking about important therapies for children with DS) and to meet other families. 

My "reminder" came in the form of a sweet family with four children, their youngest only 4 weeks old was diagnosed with Leukemia soon after birth. Then he was diagnosed with a heart defect. And, because having a trifecta seemed to be his thing, was then diagnosed with DS.  Despite that, this sweet couple had the biggest smiles on their faces, the most positive and lovely outlook, and best of all... they had the cutest little baby boy who just happens to be one of the "biggest" little fighters you will ever meet!  Then my next reminder came through another young, beautiful, sweet couple. They had a previous angel baby who only lived for one week. Despite their heartbreak, they had another sweet little one who is now six months old and just happened to be born with DS. On first impression I can immediately tell they are a loving and optimistic family who feel blessed to have one of the cutest, bright-eyed little boys ever!  My final reminder was a sweet couple whose baby is so new he is still in the hospital, only 10 days old. Being born with DS he was affected with feeding issues and had to be placed on a feeding tube. This precious couple didn't know about his diagnosis before their sweet boy was born, so the pain and fear was fresh and new on their faces. They've barely had a week to adjust to their news. With tears in their eyes, they showed us a picture of their adorable fiery-haired little one. I remember the freshness of that pain all too well... plus the fear and the pity. This sweet couple hasn't gotten past it yet, but they will. Their tears will dry and they'll feel more joyful than they ever expected.

Today, I look at our sweet Leo and I'm reminded about how things changed for me. I couldn't have been proven more wrong about something... but I was, when the pain turned into joy, fear turned into optimism, and my pity turned into a party!

love, Joyce

Monday, May 14, 2012

This week's update & the moment I became Leo's mom

First, a quick little update on Leo this week.  He's done a great job tolerating the cardiac apnea monitor. Even though we've only had 9 alarms this past week (7 for apnea/breathing, and 2 for low heart rate), those are enough to put a parent's nerves on edge.  Especially the 2 occasions when I've been in the car. (With Leo in the back seat facing rear!) Which helped me discover I'm pretty fast at pulling off the road and stopping!  It's made me realize how much he's struggling though, and also made us aware that it's more frequent while he's sleeping. Leo goes back to the pediatrician on Tuesday for a recheck and hopefully a chance to have 2-month immunizations.

On another note, yesterday was a wonderful mother's day.  It had me thinking about the three main reaons I love being a mom.  They are spelled: M-e-r-i-s; S-e-t-h; and L-e-o. Without them, I wouldn't be a mom. (Duh!)  What I really mean is without THEM, I definitely wouldn't be a good mom. They inspire me. To love, to share, to be a better person. Believe me, I've made plenty of mistakes along the way. But their unconditional love for me, and my very deep love for them, make me want to strive to improve myself as a parent every day. What can I say, I've been so blessed by God loaning them to me!

Despite the wonderful feelings I have as of today, the hardest part of feeling like a mom came when we were expecting Leo. I have to admit this out loud, because I'm sure there will be other moms in the same shoes who struggle with their feelings during pregnancy if it's a high risk pregnancy or if they find out they're carrying a baby with DS. I'm hoping these moms will someday read my blog and come to realize that even though they feel this way, their feelings will change. They really will, and for the better! 

To explain things... in August 2010, we experienced a miscarriage. We had tried for months to conceive our third child and the loss was heartbreaking.  But we decided to move on and move forward.  After months of trying yet again, in July 2011 we found out we were expecting. Again! Because of the loss one year before it was really hard to get attached to this pregnancy and baby. I kept waiting for something to go wrong and felt like I needed to protect my heart.

The first sonogram helped to change things – we saw our baby’s heartbeat. Need I say more?  Once you see the heartbeat, you know everything is right with the world. Right?  I still felt a dark cloud looming around, but I felt better.  So I dismissed it, until I got the call on September 22 from my OB. The early diagnostic test (nuchal translucency – a combination of lab tests and sonogram measurements) showed a high risk that our baby had a chromosome abnormality.  At that point, there was a 1 in 5 chance of Trisomy 13 or 18 (both are fatal), or a 1 in 23 chance of Trisomy 21.  My OB wasn’t so concerned about Tri-21, she was more concerned about Tri-13 or -18 and the possible loss of the baby.  And so were we… so back to detaching I went. Because of that, I didn't feel like much of a mom to this baby.
The second sonogram that changed everything – on October 5, I had a level 2 sonogram along with the amnioscentesis to get a possible diagnosis of a chromosome abnormality. I was only 15 weeks along and our mindset was “work mode”, focusing on what might be wrong with this baby… checking for possible defects that might go along with the risks we had been forced to digest. First, we saw the sonographer. She carefully reviewed his tiny organs and measured his tiny bones. Watching this sweet little life tumble around, it’s a bit hard to stay detached from what you are going through – but I managed to do even that. As she ended her review of the baby, and prepared for the perinatologist to come take a look, she asked if we wanted to know the gender of our baby.  Really??!  I had no idea she could already tell, and we certainly weren’t prepared to get attached to a little he or she who may not even survive. So she wrote it down on a card, placed in a sealed envelope, and gave it to us to open “if and when” we desired to know. As Dr. Rinehart re-measured, re-assessed, and prepared for the amnio, he found absolutely nothing other than a normal, healthy baby (as best he could see this far along). So we went from uncertainty and nervousness of knowing who might be in there (a Meris or a Seth), to complete curiosity.  After Dr. Rinehart completed the assessment and amnio procedure, we caved and opened the card which read... 

The third sonogram that changed ABSOLUTELY EVERYTHING, including Me  – on November 2, 2011. At this point, we had almost a month to process the news about our baby boy. We had cried countless tears and felt every emotion possible. We also had time to scour the internet trying to find answers for questions like…., what does Down Syndrome mean for our baby? How will he be? What will make him different? What challenges can we expect? How do we prepare? And in the midst of all that information, we found out about a multitude of possible birth defects.  The main one, the biggest one, and most concerning… heart defects.  Then there was cleft lip, cleft palate, defects involving the digestive tract, etc, etc.  On November 2, came the big sonogram to peek in on all his systems and hopefully resolve our fears.  I had prepared myself for the worst of news.  Instead, Dr. Rinehart gave us a dejavu moment as he re-measured and re-assessed our boy. He found nothing other than a normal, healthy baby (as best he could see this far along). At this sonogram, there was something about the size of the baby at this point, his movements, his sweet face, the way he crossed his feet at the ankles like Seth did in utero, the way he put his little hands by his face (much like he does now, when he’s settling in to fall asleep), that took me from scared and detached to absolutely in love with and excited to be getting “this” boy.  And finally, I felt like a mom.  His mom!

Needless to say, “this” boy soon became Leo.  After a couple months of crying easily and mourning the loss of our idea what our baby should be like, our lives turned into happily planning for the love of our lives to arrive. At this point he could have all abnormalities possible and I could care less, he was going to be perfectly ours.
On March 5, 2012, he was.

Most families I’ve met (or read about, through other blogs) who have a child with Down Syndrome didn’t know about their child’s DS until after they were born. After knowing in advance and having the time to wrap my brain and heart around the idea, I’ve found it really hard to comprehend being handed that news while adjusting to caring for a newborn baby. But I will say with month after month of hearing “He’s a perfectly normal and healthy boy who just happens to have DS”, I can definitely see how parents would never know.  If it hadn’t been for the amnio, we never would have known.  
Isn't it amazing how your feelings can change with just a glimpse?  I’m glad things happened the way they did.  I wouldn’t change a thing, just like I wouldn’t change a single thing about Leo. I'm lucky God picked me to be his mom. I aspire to be the best mom I can to all of my children, and especially to him!
love, Joyce

Wednesday, May 9, 2012

"Hey two month well check-up, thanks for the Down Syndrome reminder..."

Have you ever had an “oh yeah, thanks for the reminder…” moment?  I mean when you’re plugging along in life, and then… OH YEAH, I kinda forgot about that... Thanks for the reminder.  Well, yesterday was one of those.

“Yesterday” just happened to be Leo’s two month well check-up.  Once again, I had begun journaling Leo’s first big post in my head before we even left the house for the doctor’s office.  It would be all about Leo’s two month check-up. All about how well he's doing. How incredibly lucky we are that we have so little to deal with medically.  How he is already baffling his doctor despite the odds of complications associated with DS.  Now don’t get me wrong, those dreams weren't entirely unreasonable... but the reality is, we entered the door for a “well” check and exited the door with a wedge for sleeping, two new medications, a cardiac apnea monitor, and immunizations that were postponed.  Now that was not the update I had begun blogging…

Before I go any further, let me take a few steps back to the beginning.  Leo’s first week of life, to be exact.  (I have to save Leo’s birth story for later, just to avoid making this post about 10 miles long!) March 5, 2012, at 5:27, our wee bundle arrived at exactly 37 weeks gestation, weighing in at a whopping 8.0 lbs.  That's actually pretty typical for my babies, considering Meris weighed 7.0 lbs at 36 wks along and Seth weighed 8lb 12 oz at 37wks 3days!  Leo was healthy and perfect. He surprised me with a good latch and great feeding skills for a baby with DS, but he was just sooooooo very sleepy when it came to breastfeeding. He had no endurance and spent only a few minutes at a time feeding. So the lactation nurse and I devised a plan by which I began pumping the very first day of his life. Long story short, it became feed and pump then feed again. We were off to a fabulous start and everything seemed so typically normal in newbornland. Except for Leo's sleepiness!

On our fifth day of newborn craziness, we were preparing for our big day to go home from the hospital... or so we thought. That's when things became iffy because Leo's bilirubin level had continued to climb.  He wasn't eating enough to bring his level down. Things turned a little further south when we found out his weight on Day 5 had also dropped more than it should, down to a tiny 6lb 12oz (more than 16% of his body weight lost, compared to the normal newborn loss of 5-10%). To top things off, the pediatrician ordered labwork which revealed our little guy had a critical sodium level and electrolytes that were completely abnormal, basically he was dehydrated. On day 5, I was discharged and Leo was moved to the Special Care Unit.  Luckily, I was allowed to stay with him in what was a 24-hr continuously monitored type set-up.  He was placed on an IV, heart and breathing monitors, placed under bililights, and strictly fed (including formula supplementation) every 3 hours. It was a grueling 24 hours, let me tell you!  But our little guy bounced back so quickly that he only had to spend one night under special care before being discharged to go home. 

At home, we continued the "every 3 hour" feedings and supplemented with formula. With the help of Leo's amazing dad Chris, I was able to pump every 3 hours while he fed Leo at the same time.  Around. The. Clock. Nonstop.  Leo went to the pediatrician's office for a weight check after arriving home, then again at two weeks and one month.  By one month, he weighed in at a hefty 9lb 11oz!  He was doing so great, I almost forgot he has Down Syndrome.

Also at one month, based on his having reflux and low muscle tone, our pediatrician ordered a barium swallow study.  This was no big deal to me, as Seth also had reflux and went through a swallow study as a newborn.  I totally knew what to expect.  On April 5, we headed over to Medical City for yet another little routine thing.  For the study, there are breastmilk and formula consistency types of barium which were fed to him while an xray views the liquid traveling through his esophagus. Leo's swallowing showed traces of liquid leaking into his nasal passages. Not only that, the liquid would wash against the opening to his airway and linger... revealing his muscles for swallowing were weak.  This is a side effect of hypotonia, low muscle tone, common in Down Syndrome. So what did all that mean?  It showed he's at high risk of aspirating (liquid going into his lungs), at high risk of infection due to bacteria from the liquid going into his nasal cavity, as well as at risk for pneumonia. Wow, that was a lot more than I had expected. 

This required us to begin thickening his milk or formula to make it a heavier consistency that would travel more quickly. The therapist came up with a recipe that looked perfect on xray, and I was in charge of making it work at home. Well Ha, Ha, Ha, is all I have to say about that!! Seriously, we thickened with "simply thick" as instructed and our little guy couldn't get it out of the bottle.  We switched to rice cereal for thickening and that wouldn't work. Without spending too much time on what the problems were, I will say he spent an hour at a time to get less than one ounce when he should have been eating 3 ounces in 20 minutes!  There were conversations with the pediatrician, the nurse, the specialist who performed the swallow study... there were attempts with four different rice cereal brands... and FINALLY, three weeks after his swallow study, we found the key.  And if you ever know anyone who needs to know how to thicken formula successfully... here's our Secret Formula! 
  • Mix formula with HOT water
  • Add Beech Nut rice cereal (use amount directed by your therapist)
  • Blend well, in a blender, then refrigerate.

Geez, that was grueling!  After which, we quickly settled into our new routine (with one slight bump consisting of a sinus infection + ear infection + oral thrush), but otherwise it was a routine.  And once again, I kinda forgot about my baby having DS. 

Which brings me to the "Two Month Well Check-Up".  Leo grew two whole inches, which took him from the 25% to the 50%!  He weighed 10lb 13oz, keeping him at the 25% which is great because that was a steady gain.  His little head measured large enough to take him from the 10% to 25% also!  All in all, great.  Then after all that good news, I sorta casually mention how the week before Leo had spit up and couldn't clear the liquid on his own... causing him to stop breathing until I could rip him from the bouncy chair, rush him to the bedroom, grab the suction and remove it. (With the fear that I had injured a tonsil in the process, I might add, because I did it so frantically!)  Ummm, what was that?  The baby was choking?  So if mom had not been there to suction the junk from his throat, there would have been serious consequences?  Why yes, that is correct Dr. London. So there you have the story behind Leo being awarded the brand new, flashy Cardiac Apnea Monitor which he shall be adorning 24-7 for no less than the next two months. Which, by the way, has already had it's first alarm tonight (for apnea, as he was sleeping... which meant he paused his breathing more than 15 seconds... isn't that exciting?) and is the reason I am wide awake writing this post.  Yay me!

As for the other awards, I won't bore you with the details of Leo being switched from zantac to prevacid.  Now the fact that we have to start using special ear drops on a weekly basis to dissolve ear wax is pretty interesting to me!  I had no idea such a thing existed.  But wee Leo's ear canals are teensy tiny, even in newborn measurements of teensy, due to (I know you can guess it...) DS.  Apparently one teensy bit of wax will block the pediatrician's view of his entire eardrum. No lie! Last but not least, he's been awarded a big 'ole sleeping wedge.  It looks pretty fun to me, like he'll be sleeping hanging from a bungy! I'll seriously have to post pics of it once he's sleeping on it. These were all some fun, and not so fun, reminders of DS.  I know, I know... they could be the story about any typical newborn on the block... but for our baby, they are all small side effects of the way he was born.  With Down Syndrome.  They are reminders that I can't take anything too lightly. That just when I settle in to feeling safe and secure, the smallest thing could become bigger very quickly.  But that's okay, he's worth every fine detail.  And we're learning to roll with it....

love, Joyce

Monday, May 7, 2012

Where do we begin?

So, where DO we begin?  I've been writing a blog in my head for months now.  With every feeling of confusion, fear, and then ultimately excitement about Leo's arrival. From the moment he arrived in this world, all pink-cheeked and hairy, I began writing stories in my mind about the beginning of our journey with him.  But as with every family and the birth of a new baby, there was no immediate time to create a blog to put it in, much less type it! In fact, there's only been time to feed Leo, hold Leo, (feed everyone breakfast and carpool the kids), wash Leo's bottles, change Leo's diaper, (take other children to activities), feed Leo again, clean up Leo spit-up, take Leo to dr's appointments, change Leo again, (dinner and baths), wash more of Leo's bottles, change Leo again, (cook, clean, laundry), Leo, Leo, Leo... well, you get the point!

With no time to do it, then why did I even want to blog about this experience?  I remember a day this past fall/winter (in Texas, it's hard to distinguish...) -- during one of many, many conversations with my co-worker/office-mate/best friend Holly about my thoughts and processing the fact that I was expecting a baby with Down Syndrome -- I felt compelled to share the story of Leo's life. Before I found other parent blogs online, even before Leo's little eyes opened to take a peek at this world, it felt as though God had given us this little boy made the way he was for a purpose. So.....

  1. It's our duty as his family to be a voice for Leo in sharing his story and purpose.
  2. Our extended family lives hundreds of miles away and they all want to keep up with how our bundle progresses!
  3. I hope there might be something we experience that could help some other family as they go through the process of learning their little bundle has been blessed with three chromosome 21, or even provide information and trouble-shooting to other families along their own journey as they raise their little ones.
  4. What I would really love most of all, is for Leo to read these entries some day about his own journey.

So without continuing to ramble your eyes off, here we go. Buckle your seat belt, keep your hands and arms inside the windows, put on your sunglasses, and please enjoy the ride along this journey with us! 

love, Joyce