One year - reflections

One year ago today, after spending the better part of the day waiting...and waiting...and waiting...I got to hold my baby's hand in his little corner of the Pediatric Cardiac Intensive Care Unit; he had a new battle wound and was on life support, and I sang to him, not knowing if he could hear me...

You are my sunshine

My only sunshine

You make me happy when skies are gray

You'll never know, dear

How much I love you

Please don't take my sunshine away

The last line was a prayer.  This was my new reality for the next couple of days, a reality no mother would ever wish to face.

My prayer was answered.

Eight days after my child had open heart surgery, he got to come home.  The days, weeks, and months passed as he continued to improve and get stronger.  Today, Davis is doing absolutely phenomenal!  We haven't had our one-year heart check-up yet, but I have no doubt we will get a good report.

One year later, you can just barely see his scar.

 

I recently read back over my blog posts during our days in the hospital, and I have to admit that re-living the situation through my writings and the pictures is almost unbearable for me.  I was SO strong, as was my husband, our support network of friends and family, and most of all little Davis.  I welcome you to read over the posts as well - at the time, it was a way to keep everyone at home updated; but the details are still there to possibly help others who may have to endure a similar situation.

Happiness is our current reality.  I have never been happier, and anyone who knows Davis knows he is full of joy.  He is the light of my life.

I love you Davis and am so proud of you!!!  Thank you for entering our world and for being exactly who you are.

Rainbows and Butterflies

Hey everybody - it's been awhile.  Here is a quick update on Davis, then I'll get to what's really been on my mind lately!

Since my last post, Davis turned 1 - now he is 15 months old...SO hard to believe!  He has had several illnesses this Spring including croup, colds, and a stomach bug - mainly due to him getting out, staying active, and socializing with other kids.  We found out he has a slightly underactive thyroid, but it does not require medication at this time.  All other medical reports including cardiovascular have been as good as we can expect!  Along with his early intervention, physical therapy, and feeding therapy, he attends play gym, music, church nursery, yoga childcare, Wee Buddies support group outings, and play dates.  We took our annual vacation to the beach and plan to visit his aunt, uncle, and cousin in Florida during the summer as well.  We plan on swim lessons next month, and in the Fall he will attend a Parents' Day Out program at a local church.  Now that's a busy 1-year old!

The biggest news is that Davis is going to be a big brother!  AND, it's a boy!  We haven't named him yet - he is due in October, which means they'll be about 19-20 months apart.  The pregnancy is progressing as smooth as pie.  And in case you are wondering, we did not do the recommended extra prenatal testing - we saw no reason to step foot in the high risk facility unless something specifically about this pregnancy triggered a need to do so, and we accept this little boy as he is just as we have Davis.  They'll keep this mama busy, but I know they will be lifelong buddies.  I never dreamed I would be in a house full of boys, but I am very much looking forward to it. :) Even our cats are boys except for my old lady cat who may not be around much longer.

I'm happy to finally provide an update on Davis - I continue to get several hits per day on the blog, and it bothers me that I don't take the time to do it anymore; but I simply do not like to sit at the computer, especially being pregnant because when I do get down-time, I like to sleep!  However, what has really brought me back to the blog today are the thoughts that have been swirling through my mind lately.

I have had a long time now (19 months to be exact) to reflect on Davis's diagnosis of Down Syndrome, as well as my reaction to it as his mother.  I find myself comparing my thoughts, feelings, and actions to those of other mothers of children with special needs, and I compare our situation to the situations of other families with special circumstances.  I also find myself thinking about people who maybe haven't found themselves in extraordinary circumstances, but endure their own personal struggles; and I think about how I don't find my situation to be anymore unbearable than theirs.

As anyone who knows me or who follows this blog knows, coping with Davis's diagnosis has not been very difficult for me.  I'm sure there are some who think that perhaps I put up a front, that maybe I don't truly feel as positively as I say I do.  Sure, I've had some tough moments; but the truth is, I don't feel burdened by Davis, I don't find myself unlucky to be in this situation, I don't (well, rarely) have negative thoughts about his present or future...I take it day by day, look at the big picture, and count my blessings.  Am I perfect?  Heck no, but typically my stresses are dirty floors, busy schedules, to-do lists, hormones, finding the right outfit, etc... (which all get to me way more than they should); they are not "what are people thinking of my child?" or "what will he be doing 20 years from now?" or "when is my child ever going to learn to walk?".  Do these thoughts cross my mind?  Yep - in one second, out the next.

So what do I dwell on?  My son's sweet smile and laugh, his unbearably cute hands and feet, the way he says "mama," how to best make him happy and feel secure, the opportunity to be a mother, to feel this baby move inside me, my marriage, my absolutely wonderful family and friends, how peaceful our backyard is, taking advantage of beautiful days, keeping myself and my family healthy, how wonderful it is to be alive, and how much I truly love my life.  The list goes on.

I have moments and days in which my thoughts aren't all rainbows and butterflies (just ask Matt or a member of my family); but for the most part, this is really how I think.  It wasn't always that way.  I have only been able to feel this way as I began to live life more spiritually...which just happened to coincide with the gift of my beautiful son.

The world is populated with a bajillion people.  Some children are born into harsh environments, unloving families, or poverty; some have serious birth defects, only live for an hour, or lose their mothers.  Some people don't have the freedom to believe what they want, eat what they want, wear what they want, marry whom they want...  In our culture we are conditioned to believe that we must have this perfect life, in this perfect house, with this perfect family, in this perfect body... It is extremely difficult for many of us to accept flaws in ourselves or in others and appreciate diversity.  We are so quick to judge ourselves and others when an imperfection arises.  Most of us are just freakin' spoiled!

I think when we see the bigger picture, our perspectives change and we realize that things are just not that bad.

I just see no reason to go through life with a chip on my shoulder or a "woe is me" attitude.  I see no reason to get angry when someone makes a comment about my son that maybe isn't politically correct, but no harm is meant.  I see no reason to feel badly that my son isn't walking or talking or whatever it is that other kids his age do; he is his own person with his own unique set of gifts just like every other child with or without special needs.  I see no reason to worry about his future when we are still living today, the one day I know we have. 

We are all unique.  We each have our own challenges - every single one of us!

I know Davis will have to endure many struggles throughout his life directly related to his Down Syndrome.  Those struggles are different from the ones his brother will face, or his cousins, or his classmates.  People may stare, criticize, laugh, joke, or cause harm...but I will always be proud.  My wish is that Davis will always be proud.  And I know that with each person who offers an offensive remark or action, there are a hundred others who have been positively impacted by his existence.
 
My point in all this is to hopefully make a positive influence to someone who may be enduring a struggle.  I hope that by living in a way that is consistent with the thoughts I have laid out above that I can have an impact and leave someone or something in the world better because of it.  I hope if you are still reading my ramblings that perhaps you understand my perspective a little better; and whatever your struggle is in life, I hope you are able to appreciate the "rainbows and butterflies" as often as you can...because they are always there!

 

This Month

Davis is almost 1 year old!!!  I cannot believe it!  This month is busy for us.  Next week, Daddy is off work and we are looking forward to spending lots of family time together.  Also, Davis will celebrate his first Valentine's Day - he will be attending a Valentine's Day party with his friends in our Wee Buddies support group for families in the Chattanooga area with young children who have Down Syndrome.  We had fun making Valentines today; well, let me just say Mom had fun.  Davis was not sure what to think about his art project!

Of course, the biggest event is Davis's music-themed birthday party.  I promised myself I would not go overboard with unnecessary details and spending excessive amounts of money....but I just can't help myself!  Well, I'm okay on the money because I am trying to make as much as I can by hand.  The day is going to be a fun and memorable celebration of this precious life and all his extreme accomplishments over the last year!

Here are some recent pics - enjoy!

Handsome boy!

Let's try eating shirtless - messy eater!  (His scar has healed nicely.)

Cousin time!  Davis loves Wyatt, Grant, and Haley.

Snow day!

11 months - could he be any cuter?

My new year's resolution was "Video a day," which I've managed to do pretty well.  I'm working on a YouTube channel; but as you know, I'm slow at these things. ;)  Channel of Davis coming soon!

Four Months Later...

Okay, I know, I haven't been updating those of you that follow the blog and not my facebook page.  I sincerely apologize!  I've had several requests to keep the blog updated, but I just find it so much easier to provide updates on facebook.  It's not that I don't want to keep blogging - I do; but as Davis has gotten older, I find I do a lot of entertaining and not as much sitting.  Hopefully, one of these days I'll make this more of a priority - until then, send me a friend request on facebook to keep up-to-date, or feel free to personally stay in touch by email at kari.reeves@ymail.com.

The reason I chose to post tonight is because Davis had a cardiology appointment today.  Two months have passed since his last visit; therefore, I was anxious to get the expert opinion about the healing of his heart.  Here is a summary for all of you that care so much and say lots of prayers for Davis (which I truly appreciate from the bottom of my heart!):

• Valves are still leaky but much, much better
• Heart is smaller and liver is to normal size
• We can begin to wean him from his last medicine (yea!)
• Expectation is things will get even better or at least stay the same
• Follow up in two months
• He has gained weight quickly (18 pounds 11 ounces!)
• The likelihood of complications at this point is low; however, because the valves aren't perfect, Davis may experience complications requiring medication or even surgery later in life.  In the meantime, he should be able to run and play and do whatever his "heart" desires!

 I'll call that a success!

In other news, Davis had a marvelous Christmas; seeing him open presents was just so special for me and Matt.  We are planning his first birthday party, which will be music-themed because of his love for music.  Davis attends music classes once a week; he also has physical therapy and early intervention once a week, as well as feeding therapy once a month.  He is making great strides and working hard.  He recently started sitting unsupported and scooting backward - such a joy to witness!

We continue to remember how blessed we are to have such wonderful people supporting the well being of our family.  Of course, the greatest blessing is our happy and healthy boy!

I Am Thankful

November is such a significant month for me.  Thanksgiving is my favorite holiday.  I just love how laid back it feels and enjoy being able to spend time with family, just being together and reflecting on our many blessings.  Plus it kicks off the Holiday season!  This year, my baby will be 9 months old on Thanksgiving, and I have been looking forward to this time of year SOOOOOOOOOOOOOOOOOOOOOOOOO much.  There is just something about your first holiday season with your first child in the world.

Although I have an incredible amount of blessings for which to be thankful on this Thanksgiving day, it is not the only reason that November is a significant month for me.  It was about this time last year that I learned that Davis would require heart surgery as an infant and that he had Down Syndrome.  I invite you to read our story here and vote for it if you feel led to do so.  The two stories with the most votes at the end of the month will be published in the National Down Syndrome Society monthly newsletter - that would be AWESOME, because then even more people will read our story and learn about incredible Davis!

I am looking forward to taking Davis's picture tomorrow in his mini-recliner with his buddy bear.  Here are his photos from the last three months:

6 months

7 months

8 months

Sheesh, just too much cuteness.

Also, I just want to mention that Davis's little friend Coleson will have the same heart surgery that Davis had on November 28th, so please keep Coleson in your thoughts and prayers.

Have a very happy Thanksgiving!!!! 

Here is the link again for our story:
http://www.ndss.org/My-Great-Story/Virtual-Storybook/Family/One-Year/

Guest Post

I know, I know...I have not been keeping Davis's Fan Club up-to-date with his latest happenings.  I do apologize, as I had promised to do better.  I have let life get in the way, I guess.  Plus, I have plans for this blog to tweak it so that it is more aesthetically pleasing and includes more day-to-day life post topics versus just Davis updates...so I feel that I have kind of hit a road block in my creativity as I contemplate my purpose for this outlet.

So because of that, I am going to let Davis's Gramma do a guest post that she has written.  However, I do need to tell you that Davis is doing EXTREMELY well.  His cardiologist visit on Tuesday went better than I expected, and we continue to see him make great strides in his recovery and development.  I have lots of pictures and updates to share about Davis (including his first word - "mama"!), and I will work on getting it all together for you.  I can't deprive those of you that just LOVE you some Davis!

But for now, let's hear from Gramma:

I am honored to write a guest post for my daughter’s blog “Happy Heart of Davis.”

One of my goals had been to start my own blog.  I was going to call it “Joy and Lessons Learned.”

You see, starting about four years ago, I went through some struggles and major life changes.  Both of my parents became seriously ill at the same time.  Then we lost them within eight and a half months of each other.  The next year I retired from my job as an assistant principal after having been an educator for thirty years.  These things along with some family health problems and some internal issues and adjustments caused me to become stronger in my spiritual life and led to much joy and a feeling of many lessons learned. 

I think about my blessings and perspective a lot, and I want to write and share, but I can’t seem to get it done.  They say that you are busier than ever when you retire.  And in my defense, I have an adjunct position at our local university and have been very involved with my four grandchildren.

These four grandchildren are wonderful and uniquely different and precious.  Some would think that the news that one of them was going to be born with Down syndrome and a heart defect would be a cause for sadness.   As it turns out, it has been one of the greatest joys of my life.

It was a shock to hear the news at first, but that did not last long at all.  Luckily in my career as an assistant principal, the Lord had seen fit to provide me with much experience in the field of special education.  I learned so much from chairing and taking part in Individual Education Plan meetings.  I had taught music, fourth grade, and gifted children, but as an AP learned about all kinds of therapies, disabilities, and techniques for greatest progress.  I was responsible for the intake of all of the special needs children in the entire city who were turning three years old.  That meant that I had to work closely with TEIS (Tennessee Early Intervention Services.)  It was quite a task.  Later the school system put school psychologists in charge of the intake.  But not before the Lord put me through my training session. (Romans 8:28)  I can see now His divine plan. 

Davis Matthew Reeves has brought me so much joy.  Even before he was born I was inspired by the incredible attitude and strength of my daughter as she prepared to have a special needs baby with a heart defect.  Her husband, Matt, also showed great depth of character.  And my heart has been warmed by the continuous love and support shown to Kari from her sister, Kelli, who although younger, had three children first.

Then came tremendous encouragement from the rest of the family and a multitude of exceptional friends.

But the biggest inspiration is Davis himself.  What a jolly soul he has!  He and I have an incredible connection.  We even have our own song “You’ll be in my Heart” by Phil Collins, which I heard in the background once on a video about Down syndrome.  Davis may not know yet that this is our song exactly, but I know he approves because he enjoys my singing.

Davis will always be unique and different from what some call the norm in society.  He will face challenges, but he has already conquered heart surgery as a sixth month old.  Not too many people can say that!  He will have his weaknesses and strengths just like everyone else. 

And, there is one thing he can always count on.  His Gramma will always be there for him, through thick and thin.

Cardio Update

 
Over the last few days and weeks, Davis has come SOOOOO far!  Surgery day was over a month ago now, and we have been home for three and half weeks.  He truly is almost back to normal, it's CRAZY!!!

His sleep schedule is right where it should be (back to sleeping through the night around 11 hours - yay!) and his appetite is AWESOME!  His contentment is back, and so is my happy boy!  I'd have to say his biggest complaint now is his teething - typical baby stuff. :)  He still isn't very active, but he has rolled over onto his tummy on his own twice.  It won't be long until he's back to rolling all over the place.  We still won't be able to lift him under his arms for awhile, but we can begin working on head support and trunk control again.  He may have a physical therapy evaluation in a few weeks through TEIS since the surgery has set him back some regarding his physical development.

Today we had a cardiologist appointment.  The echocardiogram showed his heart to be smaller, which is great!  Pre-surgery, his heart was enlarged (and still is) due to having to work harder, and seeing this decrease in size is just what we want.  He still has some fluid in his lungs, and his breathing is still a little rapid.  Davis will have an ultrasound on his neck next week to check the blood clot - hopefully it is gone and we can stop the blood-thinning injections.

But I think what I am most proud of is he has finally reached the 15 pound mark - 15 pounds 1 ounce today!!!!  He's been in the high 14's for weeks on end, so I was happy for him to reach this milestone.  Also, you can see from the pictures below he has healed quite nicely.

Silly guy!  He loves bath time!

The good report means that we can actually show our faces in public again!  It'll be nice to get out and about with little man.  Our first big outing will be the Buddy Walk on Saturday; we are excited to show our support for Davis and others with Down Syndrome (click here to read about the Buddy Walk).  Our only issue with getting out is the flu is already spreading, and Davis really needs a flu shot to protect him from getting very ill at this point; but he can't receive the shot until he gets off the injections.  I am not a huge fan of the flu shot myself, but I guess I'll be getting my dose this week to help protect him.

It's mind-boggling to look at these pictures and then go back through the pictures on the blog over the last month and see how far he has come.  Davis is an absolutely incredible creature!  And look at those roly-poly arms and happy face - too much cuteness for this mama to handle!

Happy Days

Wow, what a great past few days for little Davis!  He is eating and sleeping well; he is still fairly inactive (which is good; he's still healing!), and he is full of smiles.  He is quite clingy and still fusses at times in which he wouldn't have prior to surgery, but I would too if I were him!  Between how he appears physically and how he is behaving, I'd say he is doing quite well for less than three weeks out from heart surgery!

Besides a little update, I want to share with you some information about Down Syndrome Awareness Month, which is October.  Buddy Walks are being held all over the country in order to raise awareness and promote acceptance of people with Down Syndrome.  The walks are the main fundraisers for local chapters of the National Down Syndrome Society.  October 13th is Davis's first Buddy Walk, and I am so excited!  We have already had several family members and friends join our team, which is called "Little D and Company," and have also raised $150 of our $500 goal so far for the Chattanooga Down Syndrome Society.

Please visit our fundraising page at http://www.crowdrise.com/LittleDandCompany if you would like to make a donation in honor of Davis.  If you would like to walk with us, visit https://www.keysecure.com/chattanoogadownsyndrome.org/index.html to register.  Note:  if you want a t-shirt, you must register by Friday the 28th at 5:00, and remember to put Little D and Company as the team name.  This is our first opportunity to publicly show our support for Davis and other members of the community with Down Syndrome; it's going to be a fun event for all.  A big thank you to those who have already donated or registered!

Well, Davis doesn't go back for a doctor's appointment until October 8th and/or 9th.  Let's hope the next week and a half continue to yield improvements for Davis.  Hopefully, we will be cleared to resume normal activities!  Thank you all so much for the continued thoughts and prayers. :)

2 weeks and 2 days

Well, it's been two weeks and two days since Davis had open heart surgery.  Considering the circumstances, I'd say he is doing extremely well!

Our challenges this week have been with Davis's eating and sleeping.  His appetite is not what it used to be, and we had concerns that he wasn't getting enough nutrition and hydration (his doctor says he is fine and eating will pick up).  Also, he is having trouble taking naps during the day, making for a very challenging day and especially evening.  However, each day seems to get better; in fact, yesterday was a TREMENDOUS day.  He ate a LOT and got in two good naps with some diligent coaxing by me.  We're not having too much trouble with night-time sleep besides occasional, brief crying episodes when he wakes.

All this has been disappointing because Davis has always been an excellent eater, has always slept through the night since he was one month old without any trouble at all, and has consistently had such a pleasant, content demeanor.  So in a way, I feel like I don't have my same little boy anymore.  But since each day is improving, I feel that he will be back to himself in a few weeks.

Physically, he seems to be doing great.  His wounds look good, and each day he seems to get stronger.  I took a video scan of his body today, so that I can compare how everything looks days and weeks from now; I thought about posting it but then decided that no one really wants to see his yucky chest tube wound.  I will get a picture of his incision soon though and post it - I'm amazed at how wonderfully it has healed!  Additionally, I don't have to worry about Davis rolling across the room...yet.  I'm sure he'll get there soon, he was rolling all over the place prior to surgery.

Yesterday, Davis turned 7 months old - unbelievable!!!  Before you know it, he'll be graduating high school. ;)  Is that the cutest smiley face or what?

Back at Home

I know...just because we are home with Little D does not mean I can stop posting about his progress.  I am reminded of this fact by the messages I have received from fans of Davis asking about him (which I don't mind of course...thank you for your concern!).  I promise I will continue to keep up this blog; it's just been busy around here!  At the hospital, we had lots of nurses and doctors to help us...here, it's just us!

Poor little Davis is not himself right now.  Those of you that know Davis know that he just may be the most pleasant, chill baby ever.  But he has not been a happy camper - he just doesn't feel good!  I suspect that not only does he continue to have pain, but he is a bit traumatized from his experience.  I would be too; his whole world was turned upside down!  I think it's going to take awhile to get him back to being comfortable, physically and emotionally.

Our new situation is hard on me because I'm already tired and stressed about caring for him the best I can (I am slowly building confidence with the medicines and injections), and he is requiring more attention to help him be comfortable, not that I mind.  Gramma came for a couple days to help, and now DD is here.  Not only that, we have had our kitchen stocked by Matt's parents as well as our best friends in the world!!  When we returned home from Nashville, we were surprised with "Welcome Home Davis" signs and lots of food and goodies to keep us fed for several days.  Sneaky friends!!  We love you!

Our cardiologist visit yesterday did not result in any new findings.  Dr. Johnson pretty much confirmed what we already knew.  He will closely watch the right leaky valve as well as the blood clot.  He doesn't think that Davis's lung is collapsed at all but sees some fluid in and around the right lung on the x-ray.  I am surprised Davis isn't glowing from all the radiation from the numerous x-rays he has received so far in his lifetime.  I am not much for modern medicine for the majority of human illnesses, but I definitely appreciate it for helping with the issues we face with Davis's heart.  Because of such medical advances, Davis will most likely be able to live a long, happy life!  All the tests and medicines make me cringe, but it's necessary in his case.  And I LOVE Dr. Johnson and know Davis is in good hands.

For those of you not on facebook, here is the picture from Davis's last day at the hospital - cute little buddy!  I'm too lazy to take and post more pictures today, but don't you worry, I will get some good ones soon (it's almost time for 7-month chair/bear photo!)...I just wanted to get this information out while I had the chance because I know so many of you care and want to pray for specific concerns.

Heading home

We are heading home from the hospital! I cannot believe how quickly my little man has healed! He is full of smiles today and happy to be out of that hospital. It felt so good to be able to hold my baby without all the wires and tubes and dress him in his own clothes. While Matt and I are thrilled to be bringing him home, our journey still continues...

Yesterday Davis had a full echocardiogram completed to look closely at his heart post-operatively. The most intricate part of Davis's surgery was making two valves out of one. The echo showed that the left valve, which is the most important valve, looks perfect - this is wonderful news! But the right valve has moderate to severe leakage. This is disappointing to hear that the repair was not perfect. It's quite possible that the valve will thicken with scar tissue over time and will not cause problems down the road. At this point, another surgery is not recommended. It's simply something that will have to be monitored.

Additionally, Davis's chest x-ray this morning showed more fluid on his right side. I'm frustrated because over the entire week we've had this problem with his right side, and honestly I dont think the doctors know exactly if it truly is fluid, or a partially collapsed lung, or both; they said it's difficult to tell. So we are treating for both and we'll see the cardiologist on Monday.

The next few days and weeks will continue to present challenges. I am most nervous about administering his medications correctly, particularly his injection. Plus I am so sleep-deprived I am worried about making a mistake; my mental function is extremely poor right now!

I don't mean to cause this post to sound negative; I just want everyone to know about the present concerns. There is still so much about which to feel positive! Davis is alive, his heart is better than it was, he'll continue to heal and feel better, and all of this really is a miracle!  And the biggest miracle of all is Davis - he is my hero.

I took some very cute pictures of Davis today, but because I am not technologically inclined, I can't figure out how to get them to the blog using my iPhone. I'll have to do a special picture post later.

I can't thank you all enough for all the support and encouragement!

Day 8 - End In Sight

It's Friday - one week ago at this very moment, my little baby was having a life-saving operation.  And look at him now!  It's just incredible.

So here's Davis's latest update:
His right lung is only partially collapsed, and it's better today than yesterday.  It's not a huge concern right now and should get better with a respiratory treatment called CPPD, which he actually likes, and more movement on his part.  He is in some pain today when he moves and coughs, but we are treating the pain with Tylenol and oxycodone.  His remaining chest tube will be removed shortly, along with his pacer wires; this should result in less pain and easier mobility - yay!!  Did you notice looking at the picture that he is off his oxygen? :)

Davis is eating well today!!  -almost back to normal.  And I was able to get two half-smiles out of him today, despite his pain.

We are actually talking about discharge tomorrow.  If not tomorrow, then Sunday.  Can you believe it?  We still have to get that lung functioning better, but there is not much doubt about its improvement.  There is always the possibility of another setback.  But we are planning on discharge during the weekend and tying up our loose ends today since it may be our last week day here.  CRAZY!!!!!!!!

Almost back to his old self!

Day 7

Hi, Everyone.
It's Patsy here, AKA Gramma.  It is pretty late on Thursday night, and Kari has finally been convinced to try to get some sleep.  She and Matt got almost no sleep at all last night.  Davis was uncomfortable through the night.  Right now, Matt has had a little nap and is feeding Davis.
It is great to see Davis eating.  I have not gotten a big smile out of him yet, but I can tell it is coming.  He is starting to communicate with his eyes, his signs, and some cooing. 
It has just been a difficult 24 hours with his comfort.  He hurts but can't really tell us where.  A new development is his collapsed lung on the right side. 
So Kari asked me to do this blog update.  Short and simple.  But she knows that so many are looking for the updates each day.  I plan to do another guest post when things settle down that will be more reflective in nature. Sorry no pictures this time.  Thank you again for the tremendous support and all of the prayers.
Good night all.

Day 6 - Moving On Up

What a great day for little Davis!  And a BUSY day.

We are out of the ICU!!!  This is huge!  We came up to the regular pediatric floor with oxygen, a feeding tube, and one chest tube.  That's pretty good!  However, we started fluids because we are having some trouble with feedings.  He did very good on his first bottle yesterday, but we think that the food hitting his stomach caused some tummy troubles.  I can only imagine after not eating or pooping for five days that it would not feel very good!

So in order to get some nutrition back into that little body with the healing heart, his feeding tube and fluids will meet his nutritional needs, and he can focus on resting.  Tomorrow we will get back to work with feedings.  Getting out that last chest tube and letting his throat recover from being intubated will help him.  Our other focus is to keep him changing positions and elevated in order to get rid of some chest congestion.

Davis had music therapy today!  It was beyond cool.  The lady had such a pleasant, soothing voice.  Davis absolutely loved it.  The music therapist said he has an amazing attention span for someone his age.  It was therapy for Mom and Dad too.

Davis had lots of visitors today!  It is easier to visit now because this floor doesn't have all the limits and rules as the other floor.  Our room is MUCH more pleasant with lots of space for sleeping, bathing, and storing our stuff.  The nurses are absolutely wonderful.  We expect to be here for several more days.

Davis is really enjoying his E-cards!  I know, how much can a baby really enjoy them, right?  But he looks at each one as we read the message to him.  Keep 'em coming!  Room 7739.

Let's hope and pray for a peaceful night for Little D and a productive, feel-good day tomorrow.  The worst is behind us, it should be all uphill from here.  And if not, we'll take it as it comes and plunge right through it!  This dude can handle anything - he has got to be the world's most patient patient.  I am truly blessed to have this amazing human being in my world.

Day 5 - updates

We have good news and bad news. I never know whether to start with the good or bad. Let's start with the bad so we can end on a good note.

An ultrasound of Davis's throat showed he had a clot in his jugular vein which held his central line for several days. This means he will have to start blood thinning medicine via two daily injections. I will be taught how to administer the injections because he will be sent home with it. We will have to take him to the doctor regularly until the clot disappears. :( This is upsetting because it's just one more thing to worry about. Blood clot formation is very common with his situation though, and the doctors are not too concerned.

The good news is I got to hold my buddy! We cuddled and rocked, and I fed him some milk. He's so skinny compared to his size pre-surgery, but I have no doubt he'll gain weight quickly, especially now that his little heart is fixed.
 

Me and My Buddy

Day 5 - Extubation!

Progress, progress, progress!!!!

Davis had his breathing tube taken out this morning!  This is a huge milestone in his recovery.  He is still on a little bit of oxygen.  He got to sit up this morning, and he has been awake quite a bit.  He is off several medications, and one by one they will not be needed.  He still has the chest tubes in, and those will probably come off tomorrow.  Here in a little while, Davis will be offered a bottle of breast milk - knowing Davis, I have a feeling he will do quite well.  If so, his feeding tube will come out.  We will be moving to the regular pediatric floor either tonight or tomorrow if everything goes well!

Such a cute little trooper

I am overwhelmingly pleased with his progress in the last 48 hours; those first 48 hours were rough!  I will admit that, in a way, having him awake is almost tougher on me as his mama because he is so pitiful and aware enough to know he just wants his mommy!  He is making some sounds now, little whimpers and coughs, and his eyes are wide open now at times; in those big brown eyes I see fear and discomfort. :(  He has begun to cry several times as I've tried to soothe him; I know he just wants to be picked up.  I may get to hold him this afternoon; if not today, then for sure tomorrow.

So now the hope is for his recovery to continue as quickly and easily as it has the last day or so, that he continues to receive good care from his nurses (we've had a few issues in the last 24 hours), and that he does not have to suffer too much mentally or physically.

We just love Davis SOOOOOOOOOOOOOOOOO much, and he may just be the most well-loved boy I know.  The support from our family, friends, and people we don't even know has just been AMAZING!  We received more E-cards today and read each one to Davis.  They are so cute and fun to receive, and I'll be saving them for Davis to keep and read one day so that he'll know how much people cared about him and what a trooper he was.

Peace Baby!

Day 4

Davis is making progress, slowly but surely!  We have a few tiny setbacks, which is much better than the larger setbacks we were having the first couple of days.  He is still in the PCCU but moved from a critical care room to a room in which he shares a nurse with another patient.  This room is more comfortable for me and Matt - we have a pull out couch, bathroom with shower (tiny, but we'll take what we can get!), and lots of windows.  His room number is 5744.

We thought we were going to be able to get Davis off the ventilator today.  He doesn't need the ventilator anymore - they have taken his levels down and he is breathing over it on his own.  However, he has swelling in his throat around the breathing tube.  This swelling, along with the fact that he has low muscle tone caused by his Down Syndrome, is a concern because we need that airway to be good and open once the tube comes out.  So he will keep it in today and through the night, which means they will still have to keep him quite comfortable and fairly sedated.  They will put a feeding tube in this evening and give him some of the milk I've been pumping and saving for him.

Another issue we had today was with his fluid.  One of his chest tubes was clogged, and an x-ray found a pocket of fluid.  Once the tube unplugged, he began draining just fine.  The catheter is out, and he is making plenty of wet diapers!  His skin is very sensitive right now from all the stretching and swelling.  He had a bandaid over a little hole made for his pacer wires, and when the nurse removed it, his skin came off!  He has lots of irritated skin all over his body right now, poor thing.  I can't wait to get that body home and rub lotion all over it!

Davis has no fever!!!  He is restful but also more alert when he is awake.  He is enjoying a homemade mobile I made for him with his favorite toys hung from a bed lamp.  An order has been put in for music therapy!  He loves music and I am excited to see how he does with this.

I believe each day we will see greater and greater improvements from here on out.  Maybe tomorrow I'll even get to hold my baby!!!!!!

And one thing his fan club (ha ha) may be wondering about:  we received his E-cards!  We haven't looked at them yet but will here in a few minutes.  I can't wait to see them!  Thank you so much!

Day 3

We are more than 48 hours post-op now.  Davis had a good night last night.  He was given some medicine for agitation and slept peacefully through the night.  He was taken off some medicine that was helping keep his blood pressure up and did great for several hours!  However, this morning his blood pressure dropped again; also, his urine output wasn't ideal and his creatinine level was up.  This means his kidneys are having some trouble, which can happen after being on bypass.

Davis's medicines

He was put back on the medicine to keep up his blood pressure which will in turn supply more blood to the kidneys.  The kidneys need this blood to help get rid of the fluid build-up in his little body.  He is on two medicines now which also help to push out this fluid.  He is very puffy, and we are ready to see that swelling go down.  He has started to produce more urine in the last couple of hours, and this is good news - we need that to continue throughout the day.  We can't begin to wean him off the ventilator until he gets rid of some of this fluid, because his lungs and heart will need more of his energy when off the ventilator, and we currently need all his energy to go toward keeping up his blood pressure and pushing out fluids.

All the machinery

Davis goes through periods in which he is awake, but he is not fully aware even during his wakeful times.  He responds to touch and the sound of my voice and occasionally opens his eyes a little.  He needs his pain meds and medication to keep him calm in order to keep him restful as much as possible, but because he is off the paralytic, he does move around some.  He is keeping his temperature down on his own (still low grade fever) and his heart rate is steadying at an ideal pace.

As long as he keeps up the urine output and the blood pressure, he may start weaning off the ventilator through the night and tomorrow unless another issue appears.  His surgeon feels he has turned a corner, but there are still lots of critical issues and concerns.  We want him off the ventilator as soon as possible, not only to see how he does on his own but for his comfort during his awake periods.  Plus once he is off the ventilator, I imagine he will be able to start eating some.

Living in the PICU day after day watching your baby suffer and not being able to help him is not a pleasant experience.  We were expecting a quicker recovery due to his absence of risk factors, but his complications are nothing too far out of the norm for this type of surgery and so far very treatable.  We have to be patient and wait for his little body to heal itself.  We are not moping around, focusing on the difficulty of the situation, though we are saddened when he has a setback.  We have been able to keep our positivity and strength, which we are able to do since we have each other, our family, and our friends who are helping us through it; and we still have our sweet baby with us.

Sweet baby boy.  :(

Davis has a long road of recovery ahead of him.  I daydream of holding him, rocking him, feeding him, playing with him, and, probably most of all, seeing him smile.  He is such a sweetheart and such a trooper.  The nurses think he is so cute and sweet. ;) And they don't even know the real Davis!

Davis will be in the PCICU for a few more days.  His daytime nurse he has had the last three days is off for the next four, and we've been joking that we hope we don't see her again.  Hopefully by that time we will be moved to the regular pediatric floor.  Not only will this mean that Davis is much better, but the accommodations for me and Matt will be much more comfortable.

I know Davis has a lot of fans and followers, and I will continue to update daily and/or when anything major changes.

Last 24 hours

Davis has been out of surgery just over 24 hours now.  Immediately after surgery, he was doing quite well and we expected the best.  He began to wake up yesterday evening, which just broke my heart.  He was not comfortable and did not like the tube down his throat.  He cried little tears with no sound.  It was definitely a moment I wish I could forget.

Then things started going downhill; his temperature began to rise, his heart was beating at times slowly and at times too fast, his blood pressure plummeted, and there was a possibility of pulmonary hypertension.  The decision was made to give him medicine to keep him asleep and keep him still, on top of all the other medicines needed to assist his pain, blood pressure, etc...  He also started a nitric oxide treatment.  A pacer was necessary to keep his heart in rhythm.  He was monitored very closely through the night.

In the morning, the doctors discovered that he had a pocket of fluid on the right side of the body that was not draining; an echocardiogram was performed to double check the condition of the heart, which was found to still be in good shape.  Another chest tube was inserted to drain the extra fluid.  Once the fluid began to drain, he began to improve rather quickly.  He soon came off the pacer and hasn't had to be put back on it.  This is a very good sign!  His temperature is also much lower and his white blood cell count is normal.

The tricky part now is to keep his blood pressure stable while eventually getting him off the ventilator.  Over the next day or two, medicines will be adjusted to work on these goals.  He is beginning to wake up some, very slowly, and we will see how he does.  It is basically just wait and see at this point while assisting him with moving in the direction of his little body working more on its own.

Davis is in good hands.  The staff is very knowledgeable and kind - they are very gifted, and I'm so thankful for them.  Davis is a tough little guy!  He has been through so much and has a long road of recovery ahead.  I keep hearing that I'll be amazed at how quickly he will recover, and I hope that is the case.

We are hanging in there okay - we are tired, but it's hard to rest when you are this worried.  I literally thought at times last night and this morning about the worst case scenarios.  Seeing him make these little improvements really eases our minds.  I should know better than to doubt my little fighter!

I gotta go hold my little guy's hand now since he is starting to become more aware.  He needs his mommy!  And we need you guys - it's so comforting to hear your words of encouragement.  Thank you for all the thoughts and prayers.

Critical Concerns

Over the last 2 or 3 hours, Davis has developed a fever that is most likely a result of having had surgery, not an infection. The fever is making his heart rate high. Also, his blood pressure is a little low. He is uncomfortable and trying to pull at his breathing tube. So it's going to be a long night for him. He needs his rest but they can't sedate him too heavily in order to monitor his breathing progress. They are working on cooling him off and keeping his blood pressure up. He's a pitiful little guy right now. Needing some more strength and peace to get through this. :(