Saturday, December 10, 2011

Yes, I remember you

I realize that with every blog, I promise to blog more often.  And with every blog, the next seems just that much further from the last.  The truth is, I only find time to blog at 3 in the morning, when I don't have a nurse and am forced to stay awake.  Ok, so I am not "forced" per say, but I do stay awake when we don't have a nurse and thus "forced".

Since my last blog, Wyatt had an ER visit and surgery to put tubes in his ears.  Both of these events were totally and completely unrelated.  

Our ER visit was on the heels of a sleepless night for moi.  We didn't have nurse, and so I was up all night.  Wyatt was very restless and so I sat by his bed, all night.  I continued to check his trach, because he was trashing around all night and it made me nervous that it would come out (foresight, I think so).  The last time I checked it was at 5 and all was well.  

At 6:30 a.m. Mike came out and I went to bed.  Our nurse came at 7 and at 7:45 Mike and our nurse left for therapy.  At 11 a.m. Mike woke me up.  The long and the short of it was that Wyatt's trach was out and they couldn't get it back in.  After I tried, I called the ENT to let them know we would be bringing Wyatt into the ER. 

I say all of this because Wyatt's sat's were awesome! His O2 sats were 98 to 99 and his heart rate was 112.  Then, he started coughing.  We could hear "stuff" in his lungs, but could not suction because we couldn't get the trach in.  Eventually we got a suction catheter in to suction.  Then, Wyatt's sats dropped.  They dropped fast and hard.  When I "took over" he was at 40 and blue.  

Now, I have talked in the past about being a Mama Bear and taking over situations.  This was most definitely one of those times.  I don't do it because I question the ability of our nurse or because she isn't doing the job I want her to do.  It is simply because I know that I know how to "fix it".  I know how to make it all better.  And this was just one of those times.

I opened Wyatt's airway by tilting his neck as if I were going to do CPR.  I then took my thumb and forefinger to spread his stoma (hole for his trach) to open it.  After that, I began calming my baby.  I talked to him in a very soothing voice telling him that everything was ok and that he was alright and I was there.  Somehow, this was exactly what he needed.  He sats shot back up to 98.  At this point, we had called 911 and they were on their way.  

Fast forward (to spare you the boring details) he slept in the ambulance on the way to the hospital with sats of 99.  At the hospital they finally got his trach back in.  After 4 hours, we came home. 

We estimated that his trach came out around 7:30 while he was getting ready for therapy.  The strange part was that it was his best therapy ever.  His sats were awesome and he did everything they asked of him.  It was so strange.  But, because it was out for so long, the stoma had started growing back together.  Yes, that quickly!  It's scary to think of it. 

Oh, and then two days later I ended up in the ER at 2 in the morning.  Yep.  It appeared that what I thought was a heart attack was really a panic attack.  No!  Yep.  And to tell you the truth, I am not sure that I am 100% over the whole thing.  I was diagnosed with STSD after Wyatt ended up in the hospital back in April.  But, here was another event, much like the last, except that I didn't have to give him breaths.  No wonder I feel like I'm losing it most days. 

Now, all of this coupled with not having a nurse at least 3 nights a week, sometimes more.  To say that life is catching up with me is an understatement.  UGH!

But, I refuse to go on about my "darkness" in this blog.  I wanted to share some photos from Wyatt's birthday party!  It was a Dr. Seuss theme and a large success.  I can't believe my baby is year old!





Here are some of our decorations.  I would like to thank Pinterest for all of the incredible ideas.  

While I could post a million photos of the decorations, (which I am most proud of) I won't.  But, I will post some photos of the birthday boy!






I'll leave you with my "smily" boy.  This is one of my faves of him.  He was so happy with his Reddi Whip "cupcake". 




Friday, November 11, 2011

Perfection

As I sit here, in the floor by Wyatt's crib, playing him James Taylor (because we don't have a nurse and he has been up since 3:45 a.m.) I can't help but think of perfection, his perfection.

For a bit now, I have started and stopped many blogs.  It seems they all talk about how terrible my life is.  They all begin telling you all the latest developments, both medically and developmentally, for Wyatt.  This information is very straightforward.  My blog then goes to that dark place.  It seems all I ever do is complain on here.  And once I do, there is always someone there to tell me to get over it, in not so many words.  Some have hurt me, unintentionally, but most have tried to hep me back up.  I realized only recently that maybe I didn't want help back up.  Maybe I wanted to dwell and wallow in my self pity.  Don't get me wrong, there are days that all I want to do is wallow.  I want to consume myself with sadness.  I don't know why, it tends to take over.  But those days are happening fewer and fewer.  Anyway, I realized that  I never talk about how incredibly perfect my child is.

Wyatt has the most perfect nose.  I have no clue who it came from.  Really.  Mike has a pretty awesome nose, I must say.  I, however, do not.  I inherited my Grandmother's nose.  I think it's the Lafferty nose, or it could be the Blackburn nose.  However, it's hers and she can have it back.  At any rate, Wyatt's is perfect.  As are his toes.  I am NOT a feet person.  They sweat and smell and are yucky.  But not baby feet.  They are sweet and soft and simply adorable.  Don't even get me started on his hair.  Even if he did get my unruly curls, they are simply beautiful on his perfect head.  And that perfect crooked smile.  I feel blessed that Wyatt does have a smile at all.  Many Moebius people do not.

I can go on for hours, but you get the picture.  He is perfect.  As Mary Poppins put it "practically perfect in every way."

Wyatt can now sit on his own for several minutes at a time!  YAY!  When we came home from the hospital from our "extended stay" we made goals with both his PT/OT ladies, as well as his TEIS teachers.  My goals for Wyatt were simple:  I wanted to be able to tell when he was in distress, I wanted him to be interactive in play, and I wanted him to be able to sit, all by his first birthday!  You can image my elation when realization hit me that my baby met all of his goals!  I know mothers say they are proud of their children, but there are times when I think my heart is literally going to burst with pride, and Wyatt is only 11 and 1/2 months old!

Wyatt and I work and play together everyday.  Of course, I can tell when he is totally finished playing and/or working.  Lately, he has been putting his arms over his eyes, as if to say, "no more".  It's really cute, actually, but knowing that is his cue, I typically cut activity time off there.  I push Wyatt sometimes, but in no way do I want him to associate playing in the floor with mommy as "work".  So over the past week or so Wyatt and I have been working on clapping. I do it first for him to see, then I hold his hands and clap for him, then I hold one arm still while moving the other to clap, then I let him try it.  At first, he didn't make the slightest effort.  Then, he would hold his hands in front of him, looking and studying them.  For the longest time, he would put them together, just holding them.  Then, yesterday, Auntie Becky (or the Anti Becky, I like to call her but I love her!) was here.  We were all in the floor playing with his Leap Frog Spin a letter toy (that I call baby crack).  When he was over it, we started clapping.  When he would clap (with assistance) we would clap for him.  Very soon, he got it.  When he clapped for the first time, unassisted, I felt so much joy.  So much pure, amazing, heart bursting joy.  I got teary-eyed and emotional.  These are the moments I am thankful I am here, with him.

Wyatt has to have tubes put in the 21st.  Unfortunately, it's the same week as Thanksgiving and his birthday.  While I knew this was coming, I just stinks.  I pray that the procedure is an easy, simple, successful one and we are all well and good for his birthday!

So for two months now (YES 2 months) my child has been getting his first molars.  And, if you know Wyatt, he doesn't do anything half way, we have 4 coming in, all at once.  Needless to say, he has been a bit of a bear.  He is so restless in his sleep at night and chews both index fingers in both sides of his mouth most of his awake hours and has a callous on his left thumb from sucking/chewing it in his sleep.  Our doctor doesn't recommend OraGel.  She says that they swallow it and it causes their throat to numb and not be able to swallow as well.  And, given Wyatt's swallowing issues, we don't want to make anything any worse.  My doctor also says not to give him chew toys in the freezer.  She says that it can cause the gums to get frost bitten.  She does, however, recommend a cold, damp washcloth with all of the water rung out of it.  Wyatt could give two poos about it.  So, we suffer.  We even talked to her about the teething tablets, but she says no to those as well.  Her fear is that he will aspirate on some of it because of his swallowing issues.  So, we tough it out.  

I have been so very blessed to have found the Moebius Syndrome Foundation.  I have connected with a few mothers so far, and have found such solace in the information and support they offer.  It's kind of like we are all in a private "club".  I mean, you can talk about your child's delays or achievements with other parents, but they don't really get it.  Don't get me wrong, the support from everyone, Moebius parent or not, has been incredible.  But when a Moebius mother says "ask you doctor about" this or that, it's because they have had the same issues.  It's such an incredible comfort.  

When I initially registered with the Moebius Syndrome Foundation, they sent me some awesome information.  They also sent Wyatt a super sweet Moebius t-shirt.  In the information I received, there was an article that struck me so profoundly, that I try to live by it daily.  While I don't recall who wrote it, or where it came from, it was such an incredible epiphany to me; like I woke up.

The article talks about having a child with special needs.  It's like planning a trip to Paris.  You saved up for this trip for years.  You have dreamed about it.  You have bought all of the travel guides.  You learn French.  The big day comes and you get on the plane.  You land.  But, when you get out you aren't in Paris.  Instead, you are in Holland.  You didn't plan this.  You don't know the language.  You don't have the books.  This isn't what you planned.  The moral of the story goes on to say that even though you aren't where you planned on going, Holland is also beautiful.  And if you dwell only on things you miss about Paris, then you will miss the beauty of what you have.

In the end, my eyes are open.  Wide open.  I appreciate so much more.  I know Wyatt will never be like most children.  He will struggle.  He will be teased and taunted.  He will have his heart broken by words and people.  But, in the end, my son will excel.  My son will climb many mountains, but once on top, he will plant his flag, for the world to see.  

Wyatt playing in the laundry basket.  PT said it's great to  help him sit. 








Wyatt's first Halloween.  The world's cutest Charlie Brown!

Wednesday, September 28, 2011

Most recent

What a week this has been!  Oh, and it's only Wednesday!

On Monday, Wyatt had PT, OT and Speech Therapy at 8am.  During therapy, he seemed to be sleepy and just not feeling well.  The older that Wyatt gets, the more defiant he gets.  Mike blames me, but,  ok, so maybe that is from me.  Anyway, he wasn't very cooperative at all during therapy.  The worst part was that we had an appointment with the Vandy geneticist at 11:30.  

On our way to Vandy, Wyatt slept.  Our drive to Vandy is only 20 minutes, typically.  I knew we were going to be early, so I just took my time.  When we arrived, he was still asleep so I tried to to jostle him to wake him.  Thank goodness he slept until it was time for weight and measurements.  This nap was much needed!  (We also saw his PCP on Tuesday who said we have another double ear infection.)

For those of you who have noticed, we have seen a geneticist in the past.  The one we saw was part of Centennial, the hospital where he was born.  This geneticist, is part of Vandy.  I felt it was better to centralize all of his doctors to Vandy.  It's much easier for his care.  Their computers are all linked and they have access to everything, making it much easier to look up information they may need.  This appointment was made more than 6 months ago, but I was able to get in to see the other quicker, so I kept it.  I know, crazy mother!

Anyway, this visit was very bittersweet.  During the first five minutes of seeing Dr. Phillips, he diagnosed Wyatt with Moebius Syndrome.  Now, if you have followed my blog previously, you know that from the time he was three months old, I have questioned Moebius.  I had researched it for quite a while and felt as though he may have it and I questioned many doctors about the possibility that Wyatt had this syndrome.  We even saw another geneticist who assured us that he did not and that all of the issues I had noticed that were similar to Moebius, were simply low muscle tone.  Within the first five minutes of meeting Dr. Phillips, and with the first six questions he asked me, he had diagnosed Wyatt with Moebius.  

While this diagnosis is disheartening, it is also a sort of relief for me.  It's strange, I know, but I feel like the weight of the world has been taken off of my shoulders.  I am not sure why this is, but I really feel relief.  I have known all along that there was something else going on that was yet to be diagnosed.  I knew my child had Moebius.  I hate that I wasn't listened to.  

Of course I go back to questioning myself.  The geneticist, Dr. Phillips, explained how Moebius Syndrome is "marked" in Wyatt's DNA.  I know that there was nothing that I did, or could have done to prevent it, but I still question things.  Then I ask why us?  I question why Wyatt.  I just want answers.  But, I know that I will never get answers to these questions.

However, with this diagnosis, I also question the future for Wyatt.  Knowing and seeing other children with this syndrome, I ache for Wyatt's future.  He will face so many more mountains than other children.  Even if he had just been diagnosed with Poland Syndrome and lived with that, he would have mountains to climb that most others wouldn't have.  But now that we have an added diagnosis, we have added mountains.  Wyatt will not be able to move his face.  The tiny movements we get now, that I associate with a smile, are all I will get.  Wyatt will be unable to move his eyes laterally (left to right).  "Moebius Syndrome is a rare neurological disorder that affects the 6th and 7th caranial nerve, leaving those with the condition unable to move their faces and unable to move their eyes laterally."  - www.moebiussyndrome.com  With that being said, my son will never be able to show emotion through his face.  He will not be able to frown or smile normally.  He will not be able to look left or right without turning his head to do so.  He will have problems swallowing and eating and may possibly have speech issues.  He could someday have vision, hearing and dental issues.  This is all so much for a mother to digest. 

I have thought about so very much in Wyatt's future since before his birth.  I went from thinking that he would die at birth to being thankful that he was alive and thriving.  To thinking he was dead in my arms, to being thankful that he was crying during an attempt to get an IV.  Then we are faced with knowing that without a surgery to "tact" his aorta to his sternum that he could die, to being thankful that he made it through.  Followed by the fact that my child had to be intubated and not knowing if he would make it, then to another surgery followed by a trach and vent to keep my baby alive.  And just when I thought it was all downhill from here, we are hit with this.  When I once thought about being worried if he wanted to play sports and get hurt, I now worry about protecting him from the cruelty of those around him.  Not just children, but adults.  How do you explain to someone staring at your child that he is unable to smile?  How do you tell someone that he can't blink?  How do you stop people from staring at your child, possibly causing that child to be self conscious?  How do you teach your child to love ones self when society is there telling them that they are not good enough because of the way they were born?  There are people every day that we tell aren't good enough for one reason or another.  The song "Born This Way" by Lady Gaga is running through my mind.  I want my baby to know that he is perfectly perfect, just the way he is.  But, how do I help ease the pain and rejection from others?  I know this personally because of my weight, but I don't want him to know this pain.  If you take nothing else from this blog, please teach your children acceptance.  Please, teach them that just because someone is different from you doesn't mean that they are bad.  It doesn't mean that they are scary or mean or dirty or ugly.  They are just like everyone else, God just made them out of different materials.

With that being said, I have found www.moebiussyndrome.com to be an incredible resource for me.  I have found mothers and fathers who have grown children with Moebius and are will to tell their experiences.  Also on this website, I found that the Foundation has a conference every two years.  In 2010 this conference will be in Philadelphia.  Mike and I are determined to learn absolutely everything we can about this diagnosis so that we can provide an environment for Wyatt that he is able to thrive in.  So, as of right now, our plan is to travel, with Wyatt (granted we are off of the vent) to Philly next year to learn more about his syndrome.  We will also be able to attend seminars from people who have children with Moebius and from adults with Moebius.  We will be able to connect with others and share the information about our children, in hopes of helping each other.  It's a support group that friends and family just can't provide.  It's a group of people who are able to share their journeys in parenthood with children with Moebius.  

Pray for us as we live in this new diagnosis.  It feels as though the wind has been knocked from our sails.  I know that we will sail again, but for now, I grieve.  I don't know what I grieve for.  What have I lost?  My baby is here, and amazing!  He laughs when I blow raspberries on his belly.  He is into everything!  He is so curious it amazes me.  He is so stubborn that I have to laugh!  I can't explain my emotions at this moment.  It's so difficult.  Just pray that I somehow gather the strength to walk though this with power and conviction.  And pray that 40 years from now President Wyatt Paul Carcione does a great job running this country!  Because I know there are great and mighty things ahead from him!

Tuesday, September 13, 2011

Lots of random stuff

I want to start by telling you that my angel is getting so big and so strong.  He's so funny and makes me laugh all of the time.  He learns things when you show him, sometimes, only once.  It's really amazing!  Thanks to therapy, he holds his head on his own about 90 percent of the time.  He has also started pushing up when on his stomach.  He still has a hard time pushing up because his left arm is slightly shorter than his right.  It's not noticeable at all to look at him, but when he tries to push up with both arms, his left arm locks into place, while his right is still bent slightly.  It's no big deal, really, once we get past this little place.  Just today he is maintaining sitting on his own for a few seconds.  He can also pull himself back up into a sitting position when falling forward.  It's incredible how quickly he is improving. He gives me such inspiration.

We have also noticed that Wyatt is left handed.  When I was growing up, I always wanted to be left handed.  My daddy is left handed and I always envied anyone who was left handed.  So, I am slightly excited that Wyatt is left handed.  "How do you know he is left handed already," you ask.  He will, nine times out of ten, always reach for an item with his left hand, over his right.  It's really incredible.

Today is a "good day" for me.  I have written in the past about days being very dark and bleak at times.  It's really day to day.  I hate it, but it is  I don't know what to do to make it better, but for now, the "good days" I treasure.

So, I just had some random things to share.  I haven't been able to have the the positive attitude to be able to share funny things lately, but I have several that I think you will enjoy.

Sunday I went out.  It was MUCH overdue and I have really benefited from it.  My first stop was Books A Million.  I seem to have an addiction.  I have been reading much more, thus the need for more books.  Not only do I typically buy myself tons of books, but I buy Wyatt tons of books.  How can you pass up clearance books at $1?!?!  Anyway, lately Mike has been reading as well.  At night, we have some "us" time while reading together.  It's been really nice.  When he heard I was stopping by the book store, he asked that I grab him a new one.  So, while I was wondering around, I happen to see the strangest sight I have seen in a long time, let alone in a book store.  There were two teenage boys, both blonde with glasses.  Both six feet, or so, tall.  And both in jeans an t shirts.  These two boys were having a light saber fight, in the middle of the store.  No, I am not making it up.  While I consider myself a geek to the core, I think I was outranked.

After trips to TJ Maxx, Old Navy, Ross and Jo-Ann Fabric, I decided to go to the Dollar Tree.  My Aunt Becky and I have been working on the planning of a Halloween party.  We had one two years ago, also incorporating our friend, Rusty's birthday.  Did I mention that it is also a costume party?!?!  It's so much fun.  Last year we had to forgo the party due to my being 8 months pregnant, and because they had just moved into their new home.  So this year it was on.  The Dollar Tree proves to be a great place to find very inexpensive decorations.  Plastic rats, crows, pumpkins (more on these later), skeletons, etc.  Anyway, I was checking out and a young woman came to stand behind me in line.  While the nice clerk was checking me out, the woman behind me asked him if she could use her food stamp card to buy energy shots.  Now, I have nothing bad to say about the fact that she was on food stamps.  I think it's an incredible program for those who are truly in need.  However, the fact that she was asking of she could use it for an energy drink did nothing but tick me off.  Was this energy drink necessary for her to live?  No.  Milk, juice, cereal, meat, peanut butter, even chocolate for goodness sake, are all understandable in my book, but an energy drink?  Come on!!  Not to mention that we were at the Dollar Tree, where everything is $1!!  Do you really need to put your $1 energy shot on your food stamp card?!?!?!

Oh, and let me tell you about the lady I saw in the parking lot at Wal Mart.  I wish I had not been driving because I would have pulled my camera out quicker than you could say your name!  She was approximately 23-ish.  She had on a grey sun dress.  It fell around her knees.  A long necklace.  I could not see this necklace, but by itself, the dress and the necklace looked appropriate together.  She also had on a fedora.  Um, ok.  But, the cherry on the cake was that she had on black Pittsburgh Steeler house shoes!  I am not kidding! House shoes, going into Wal Mart!  It was unreal!  She was totally People of Wal Mart material!!

So, back to the Halloween decoration story.  I saw on Martha Stewart where she had pumpkins covered in glitter.  Not only did they look classy, but they looked expensive.  I saw similar ones at TJ Maxx for $15.  So, my inner crafter kicked in.  I could so do that!  Yeah.  So, I found pumpkins at the Dollar Tree for, you guessed it, $1.  Next, I bought Elemers glue two for, right again, $1.  Then I went to Wal Mart and got silver glitter.  It was $2.48 for a giant jar that could cover 10 pumpkins.  I decided that yesterday was a great day to glitter pumpkins.  While this task would not typically be a big deal for most people.  I am not most people.  I tend to make things a much bigger deal than they should be.  Did I mention that I decided to take this task on in my living room?  Yeah.  Needless to say, my living room is all sparkly and pretty.  No wonder my poor mother was wanted to pull her hair out most of the time!  Except now, I can't blame it all on my brother and sister!

Now, as most of you now, I do entirely too much thinking from time to time.  Sometimes its to the point that I really put much thought into things.  My recent thought was that of the Smart Car.  Of course, as a "plus sized" girl, I think about the ability of a chunker to get not only in, but out of said Smart Car.  Then I wonder if they make XL Smart Cars.  Not that I would by one, but I still wonder.  And once on that thought, I can never recall seeing a "brother or sister of weight" driving one.  Is it because they can't get in or out of one?  Who knows.  Strange, I know.  Don't judge.

I adore our new nurse Sheila.  Have I mentioned that?  I love Tuesdays.  We talk about everything.  We are very similar in our views of the world.  We also both enjoy reading and are constantly recommending books for the other.  Oh how I love Tuesdays.

I should end for today.  Hopefully this will be a good week.  I pray that it is.  I have hope that I will gain a better outlook on things and find something to keep my mind occupied.  In the meantime I am going to continue glittering pumpkins.  If they turn out ok, I may share the finished product with you!


Monday, September 5, 2011

Just a thought

You know, it's funny how life works sometimes.

As I sit here at 12:00 a.m. my mind wonders, as it does most evenings before sleep.  I think about so very much that I have a hard time shutting down.  However, tonight I ponder my life as a stay at home mom.

I remember way before I was pregnant.  Probably way before I was even sure I wanted babies.  I use to say that I wanted to be a stay at home mom.  My mother was able to be a SAHM off and on most of my life.  I remember how proud I was when she would accompany me on field trips, or when she would bring cupcakes to school for party days.  That was my mom.  Everyone loved her and I was so proud she was all mine.  I wanted to be that.  I wanted to be the mom that everyone loved and who my child would be proud to say was his/hers.

I fast forward to a year ago.  Mike and I were struggling with the knowledge that our child would be "different".  Our "secret" wasn't something I discussed with many people.  Then, just as now, I didn't want people feeling sorry for us.  I didn't want the pity thrust upon us by people who learned our story.  Every morning on my way to work, I would talk to God.  (Note, I still talk to God, but back then, my prayers were much different than they are now.)  During my morning talks, I would ask God that if he saw fit, that I would be able to stay at home with my baby.  That I would not have to send him to daycare and I would be able to be the mom I wanted to be.

Now, I reflect upon this prayer and giggle.  Ask and you shall receive.  However, I never, in my wildest dreams, thought it would be like this.  I never thought I would miss work the way I do.  I thought that staying home meant that I could clean and stay organized and take Wyatt for walks, and go to Mommy and Me music classes.  Things could not be farther away from this dream.

I know that I have talked about how difficult it is to take Wyatt out.  But, in order to go to his therapy, we have to take his vent (even if he is not on it), his suction machine, his pulseoxometer (which he is on 24/7) an oxygen tank (just in case) a bag full of his power cords and a diaper bag full of not just normal baby things, but tons of supplies, just in case.  Then, when we get wherever it is that we are going, his car seat goes into the stroller, the vent goes underneath, and we get to carry the rest.  So, you see, just going to a walk in the neighborhood is a chore.

I long for the day to be able to just pick him up and walk into the kitchen to get a glass of water.  If I want to do this now, I have to carry his pulseoxometer.  I long for the days that we are able to go out to dinner, just the three of us, as a normal family.  My son has only ever been to therapy and to doctors appointments.  He has had no social interaction with children his own age, and that worries me.  I don't want him becoming shy and timid.  I want him to shine.

Being a SAHM isn't all happiness all of the time.  For me, I feel like I have lost a part of who I am.  Please, don't get me wrong, I have never been prouder of any job in which I have held compared to the job of being Wyatt's mom.  I am honored that God trusted this amazing child to me to raise.  However, I feel like who I am is missing.  I don't do anything, how can I, I don't have time.  I don't go anywhere, except on Thursdays and Sundays when I go "out".  I never see anyone, except for Thursdays and Sundays.  No one comes to see me.  I sit, alone in my home, waiting for my husband to come home to talk to.  Then it's generally so late in the evening that he eats, and goes to bed.  Please, please, please, don't think that I am complaining about Mike's work.  He is providing for our family and I completely understand.  But, it sucks.  He works most days from 8 am to 9 pm.  And on his days off, I try and get out of the house.  Also, we have nurses here to talk to.  But, it's not the same.  Having someone come to see me willingly.  Having someone come to my home just to see me and talk to me not because it's their job.  It just stinks.

Now, please don't think I am ungrateful, because I am very grateful.  I am thankful that God answered my prayer.  I don't think that I could stand the thoughts of Wyatt being somewhere without me in his current "condition".  I don't think that I would last two seconds knowing that I was not able to be with him.  However, it is such a difficult adjustment, being dependant.  I have discussed this in the past.  Feeling like for the first time in my adult life that I am having to depend upon someone else for my everything.  It's a hard pill to swallow.  At the office where I most recently worked, I had my place.  I like to think I was the positive light.  Now, that assumption may or may not be accurate, but I like to think I was that.  I said good morning to every person I saw in my office.  I (generally) always had a smile on my face and always tried to have something good to say.  Again, this assumption may or may not be accurate, but I like to think this was the case.  With that being said, it's very hard for me that I have kept in contact with very few people from my former employer.  I always thought that people would occasionally e-mail or something, just to see how, at least, Wyatt was doing.  But no.  That is not the case.  And it hurts.  I wish I could say it doesn't, but it does.  It's like raising a dog and then all of a sudden giving that dog away and never going to see it.  Ok, maybe that was a bad analogy, but you get the picture.  It just stinking hurts.  Maybe I am delusional in thinking that I meant something more to people than I did.  Maybe I was just a paper pusher that people tolerated day to day in hopes I would disappear.  But I disagree.  I do talk to some of them.  Some being two.

Anyway, I did not begin this post with the intent to feel sorry for myself.  I began it to share with you my latest epiphany.  I asked, and I received.  Just remember, when you ask for something, you may not get it exactly like you want it.  It may not be in the form of the perfect, pretty wrapped up package you were expecting.  It may be wrapped in wrinkled dirty paper.  But remember, you asked for it, now be thankful and do the very best you can with it.

I want to also take a moment to say that I am so thankful that my baby is on the road to recovery.  I understand that we could be facing so much worse in life.  The fact that Wyatt has only had "minor" issues compared to some is a blessing.  I understand that so many are facing so much worse.  My intention in this blog was not to complain about poor pitiful me and the things I face being oh so bad.  I know that we are abundantly blessed.  I know that Wyatt will someday be a completely normal child and my biggest worry will be a skinned knee.  However, the darkness of depression has temporarily grabbed at my ankle, pulling me under, if ever so slightly.  Tomorrow will be better.  I know this.  It is always darkest before dawn.

I realize that I have been more than neglectful in sharing the things I am thankful for lately.  It goes without saying that I am thankful for Wyatt, Mike, Roscoe, my family, shelter, God, etc.  Anyway, I want to share the latest "little things in life" for which I am thankful.

Good books.  I have read so much lately that it is sickening.

Clean sheets.

Loving nurses and therapists.

Trail mix.  Mike and I are obsessed right now.

And of course, this face!!



Saturday, August 20, 2011

Remember me?!

While I realize I always "promise" to be a better blogger and keep you updated on Wyatt's progress, I have come to accept that this task may be impossible.  We go to PT, OT and Speech Therapy three days a week and between those days, we generally have doctors appointments littered here and there.  On top of that, his TEIS teacher comes once a week.   To say that a stay at home mom has the easy life is nothing but a big fat lie.  We are constantly on the go and I find that "me" time is a sacred event, happening on Thursdays and Sundays (when Mike is off of work and forces me to leave the house).

So, to catch you all up on our latest developments, I will go back to our last appointment with Dr. Fazili (our pulmonologist).  You all know that I praise the doctors I love.  Well, Dr. Fazili is one of those doctors.  He makes fun of me, which I really adore.  He sees my tendency to overreact with Wyatt and laughs at it.  Then he reminds me of these overreactions, every single time we see him.

Anyway, at our last appointment with Dr. Fazili he wanted to try and wean Wyatt off of the vent.  It really started as a trial to see how he would do.  And of course, Wyatt was a rock star!  So, at that time, he ordered Wyatt to be off of the vent every two hours during the day.  Also at that time, we were afraid that Wyatt was apneic.  At night, or any time he was in a super deep sleep, he would "ride the vent".  This meant that his breaths per minute rate was exactly the same as what the vent was set at.  Dr. Fazili didn't feel that he was experiencing true apnea, but he wanted to make sure, so he ordered a sleep study.

We spent three nights in the hospital to see if indeed Wyatt was having sleep apnea.  While I would love to go on and on about all of our friends in the hospital and how incredible it was to see them all, I won't.  Suffice it to say that it was nice to just be "passing through" on our way.  I had forgotten (thank goodness) how the PICU felt.  It is a very sick place.  And even though the only reason we were there was because of Wyatt's vent, I found myself sinking into the same depression as before.

Anyway, the long and short of it was that Wyatt was in fact being over ventilated.  Meaning that the vent was doing too much work.  It was not allowing his body to accumulate co2 thus he had no reason to breathe.  (From what I understand, your brain tells your body to breathe in order to get rid of the co2 in your body.  That's why you breathe.)  We were sent home with instructions to allow Wyatt to begin breathing on his own during all awake hours, on a trach collar (a compressor with humidified air) and on/off in two hour sprints at night.  With all of this being said, Wyatt has conquered everything set out for him.

Next, we took Wyatt to the CADET clinic at Vandy.  CADET stands for The Complex AeroDigestive Evaluation Team.  http://childrenshospital.vanderbilt.org/interior.php?mid=7310 .  The gastroentronologist really had no reason to see Wyatt.  Other than the G Tube, Wyatt has no issues.  During our extended visit in the hospital, they told us that he had reflux.  However, all babies have reflux to a degree.  However, because of Wyatt's tracheomalaysia, they wanted to treat him as if he had reflux.  Anyway, we saw this doctor for all of 5 minutes.  There is nothing for him to do except to check on him.

Next, Dr. Goudy, Wyatt's ENT, came in.  It's so great to see doctors that have not seen Wyatt's growth.  It's really remarkable!  He was so pleased to see how big he had gotten.  Dr. Goudy checked Wyatt's stoma and said that it looked good.  His ears were also looking good.  He did say, however, that we would need to look into a longer trach in the near future.  All of Wyatt's growth has necessitated a longer one.  Other than that, he gave us a clean bill of health.

Dr. Fazili was the next to come in.  As you can tell from above, we ADORE Dr. Fazili.  He was overall very pleased with Wyatt's development off of the vent.  He recommended that we try nap time off of the vent with the prospect of coming off of the vent at night as well!

Dr. Fazili also recommended that we start trials with the Passy Muir.  WOWZA!  A Passy Muir is a valve placed on the trach that allows air to come in through his trach and then forces the air out his nose or mouth and over his vocal cords allowing him to talk.  www.passy-muir.com  So Gwen, the speech therapist, came in to show us how to use it and to check it out on Wyatt.  When she first put it on him, he lasted about 30 seconds before desating.  He did, however, find out what it did.

I need to take just a moment to tell you how incredible the sound of your child's voice is.  I haven't heard Wyatt really talk since April.  Sure, I have heard him babble a little hear and there, but not really talk like a child his age should.  The Passy Muir has been the most incredible device introduced into my life in ages.  I am now able to hear Wyatt "talk" to me.  He LOVES to scream.  I can't explain what my heart does when he screams.  It sounds so silly, but when you are use to a silent child, his screaming is like music.  Here is a video of Wyatt talking.  It's rather long, but you have been warned!



Anyway, fast forward 2 weeks.  We finally went to see the geneticist.

If you have been following my blog, you will know that I have had a fear that Wyatt has Moebius Syndrome.  http://en.wikipedia.org/wiki/Möbius_syndrome .  Anyway, Dr. Bircher, his geneticist, said that she does not feel like he has Moebius.  Can you imagine how happy I was to hear this news?  It was like a Christmas present for me.  She said that Moebius generally effects the lower extremities and Wyatt does not exhibit that.  She also feels as though his smiling issues as well as his lateral eye movement issues are all related to his low muscle tone.  She then went on to say that he will probably walk before his crawls due to the lower upper body tone.

I realize that it has been a really long time since I last blogged.  There is so very much to catch you up on other than everything above.

During speech therapy, we have been introducing foods to Wyatt, in very minimal tastes.  Ms. Jill, our first ST, was wonderful.  She was very encouraging and always praised the work I was putting in at home.  Unfortunately, since we live in Music City, Ms. Jill was married to someone in the music industry.  In order for their family to be together more, they moved to Las Vegas.  While I am happy for them, I am very sad to have "lost" Ms. Jill.  I wish her nothing but the best in Sin City!  

Anyway, Wyatt LOVES blueberries and apples.  I can't tell you the brand right off the top of my head, but it's an organic brand and he simply adores this kind.  He also gets sweet potatoes, carrots and peas.  We try to give him foods that we are able to see when we suction his trach.  If we suction and it is clear, we know that he actually swallowed the food and that none went into his lungs.  If we get back a color other than clear (or white) we know that he is too tired to continue or that we gave him to much.  

He really loves to eat, which he comes by honestly.  He holds the spoon himself and will chew on it for hours if we let him.  Ms. Jill also recommended that we get Wyatt an electronic toothbrush to help stimulate the muscles in his cheeks and mouth.  Needless to say, he LOVES it.  This is Wyatt at speech with his toothbrush.


During these last months we have been battling our first illnesses.  We started with a double ear infection with an upper respiratory infection.  While it was not fun, Wyatt further proved that he can tackle anything.  The first round of antibiotics weren't enough to take care of if, so we had to take another ten days worth.  On top of it, I am not convinced that he some of it might not be allergies.  However, because he has been sick, we have not been able to take him off of the vent as much as we did before.  This has caused a little set back in his weaning.  We still take him off during the day, but not like we were doing.  I don't want to push him too hard and cause something worse to happen.  So, we go off a little during the day and for now, that's going to have to be good enough until he is back to himself!

There are so many things I want to share with you, but I feel like I have gone on enough.  I won't promise to try to be better about blogging, but I want to be better.  This outlet was so incredible for me when we were in the hospital, and as of late, the same blackness is seeping back in.  It's hard.  I wish I knew how to explain it. Some days are better than others, of course.  But it's the same depression.  The same feeling of uselessness.  The same feeling that you are just going through the motions of life instead of living.  I really want to change that.  I really want to be a better person, not for me, but for my precious angel.




Sunday, May 29, 2011

It's the little things in life. It really is.

As I begin, I would like to thank each of you for continuing to read my blog.  When I started it, I began it as not only an outlet for my frustrations, fear and emotional pain while in the hospital, but I wanted to share Wyatt's progress with our friends and family.  While there have been millions of tears shed while sharing our journey, I am sure that there are millions more just waiting to be shared.  I know that I don't share as I once did, but I promise to make a concerted effort to be better.

Our boy is now six months old!  It seems totally unreal.  We are now in a size 3 diaper and his daily improvements are astonishing. 



We went to see our pulmonologists, Dr.'s Soares and Fazili on Thursday of this week.  At this appointment, he was weighed and measured again.  In 10 days, Wyatt had gained 11oz and a quarter of an inch!  HOLY MOLY!  While I understand that all scales are different, it still means that my baby is growing as he should!  He is still in the smaller percentile for his age, but he is growing so fast!  Dr. Soares if a Fellow and we saw her when we were in the hospital.  She is very warm and caring and I just adore her.  Dr. Fazili is the attending and a riot!  He has such a sweet disposition and you just want to hug him!  Anyway, Dr. Soares asked how Wyatt was doing.  Honestly, he has been doing remarkably.  I say this reluctantly because every time I say he is doing good, something happens.  I told her about how the albuteral treatments had helped Wyatt but that he had not needed one in nearly a week, but continued to sound clear. I told her that he was still apenic, but there had not been issues, per say.  So, she wanted to talk about doing some trials of CPAP or off of the vent. 

Now, as a mother, I want nothing more than for my child to not need the assist of a machine for him to be able to breathe.  However, in order for him to get to this place, he must build that strength back up.  And, in order for that to happen, he will have to do these CPAP or off of the vent trials.  Also as a mother, I have seen my child turn variant shades of blue more than any person should ever have to experience.  With that being said, I was both elated and terrified at the same time. 

Dr. Fazili came in to confirm this plan.  Let's just suffice it to say that Dr. Fazili probably thinks in that I am a nutso who has no business raising a child.  I asked every stupid question under the sun, all while either ringing my hands or chewing my lip (both nervous ticks I have developed, from my mother I am sure).  He laughed at me, trying to calm my fears.  He reminded me, in his sweet accent, that if the baby started to drop his stats or if he could not tolerate it, we could put him back on the vent AND every person in the room with Wyatt knew how to "fix" it, including me.  He reminded me that he would be just next door if for any reason we needed him. 

So, they took Wyatt off of the vent, entirely, and out Dr. Fazili went.  Talk about a stressful time for mama.  I did manage to tell Dr. Fazili, before he went, that I would probably need something strong to drink after this was all done. 

I will spare the boring details as well as my nervous laughter for nearly the entire 30 minutes of Wyatt's own, unassisted breathing.  What I will tell you is that he never dropped his oxygen saturation below 98, the entire 30 minutes!  Praise God!  This was a great sign.  He was breathing a bit harder near the end, but he never dropped! 

Dr. Fazili was very reassured with this.  He also wanted to drop Wyatt's vent setting from 14 to 8 and see if he was truly apenic or if he tended to breathe around that number when he slept.  If he was indeed apenic, we would simply go back to 14 and let them know. 

On Friday we found that Wyatt indeed is apenic.  I changed his settings back to 14 and called the office.  We will most likely go back in for some sleep studies to determine what's going on with Wyatt.

However, on Friday, Saturday and Sunday, Wyatt did remarkably off of the vent.  On Friday we did another 30 minutes.  The doctor ordered him to be off 2 hours and on 2 hours for all of his awake hours.  However, as his mama, my heart isn't ready for that much.  I know the doctor would not have ordered it if he felt as though he couldn't do it, but I just haven't be able to do it.  But on Saturday, he did have a full 2 hours off and never dropped his oxygen saturation below 98.  My baby is making leaps and bounds toward recovery.  Praise God!!



I want to share with you that I feel as though the PPD is subsiding.  It may be that I can see how well Wyatt is doing, or it could be the sunshine.  It may also be a medication my OB/GYN put me on.  **(Ok, personal warning.  You know I don't mind sharing personal information and this blog is no different.  If you do not want to learn about personal stuff, please skip directly to the next paragraph.  You have been warned.)**  Since I am never regular anyway, my doctor prescribed a medication to induce my menstrual cycle if I have not had one in three months or more.  Whether the stress or simply I am irregular, a week ago today I began to take this medication.  My mood change was nearly immediate.  Maybe my hormones were just super duper off from everything.  Whatever it is, I don't care, I am just thankful that I am feeling better. 

So, I went to the grocery store tonight.  Coupons in hand.  Let me just say that while I watch the train wreck that is TLC's Extreme Couponing, I by no means desire to be like those men and women.  I think it is remarkable how much money they save.  However, I feel as though it is an illness to hoard hundreds of boxes of cereal in the top of your closet when they are going to go stale before you consume them all.  It would be one thing if you did a grocery swap (that I understand lots of people do when extreme couponing) or donate the excess items not used to various organizations, but to hoard it all like you do merely qualifies you for another reality show about the illness of hoarding.  (Off of my soapbox).  (Please note that my husband believes I have a mild case of hoard.  This and only this qualifies me to be able to complain about others' issues.) 

Anyway, back to the grocery visit.  I went to Wal Mart.  I go to Wal Mart because it is but a block from my home.  Also, I went at 8:00 p.m. on a Sunday evening.  I generally go at this time in order to miss most of the crowd.  Apparently someone forgot to tell people that this is my preferred shopping time because tonight, it was a zoo.  UGH! 

So, I got Wyatt's diapers, wipes and Mike's deodorant (I had coupons for it all!) and headed for the milk.  Ok, back on soapbox for a moment.  We use organic milk.  It not only tastes better, but it lasts longer and I feel good about consuming it with no hormones.  There are tons more reasons that we consume organic milk (and lots of other organic products) but these are the major reasons.  Anyhoo, since I am no longer working and we are watching what we spend, organic milk is a luxury that I am not about to forgo.  However, where do they get off charging $6.48 for a gallon of milk?  I could feed a cow and milk it myself for cheaper than that.

So, I get the milk and make my way to the yogurt and around to the cheese.  Then, from no where, a buggy (or cart for those of my non-Eastern KY friends) comes like a bat out of you-know-where at me, full steam.  It's a father, his daughter and son in the cart.  The father was pushing and was not angry, but appeared to be in somewhat of a hurry.  The little boy in the cart (who appeared to be around 2-ish) was crying.  The kind of crying that is "I'm tired and cranky and don't want to cooperate" kind of crying.  So, the father goes just past me and is talking to the daughter about some kind of food to get.  Anyway, I peeked my head around to look at the little boy.  He was so tired, I could see it in his little face.  So I smiled at him.  Just a sweet smile at such an adorable child, making eye contact so he could see me.  He stopped crying and smiled back.  It was just one of those moments that you feel good about.  Just one of those times where you shared a smile with a child at exactly the moment that a child needed a smile.  It made my soul smile.

Other events of note at Wal Mart this evening.  The smell of skunk was overwhelming in the frozen section.  While I did not smell the stench in other areas of the store, I am convinced that there is now a new frozen microwavable meal featuring different roadkill varieties.  Yum, possum and gravy, and only 5 minutes on high in any conventional microwave!  Just like mama just to make.  Don't forget the raccoon and potatoes.  You know the skid marks on those are real and not just made to look real!  YUM!!  Maybe I will take one with me for lunch in the office!  (Please note:  I feel comfortable talking about such due to my mountainous heritage.  I do know people who have eaten both possum and raccoon.  To each his own.)

The last note to report was that of a 20-something and her boyfriend.  It was very apparent that they had just come from working out, in some form.  They were both dressed in shorts, t-shirts and I could see her sports bra.  Oddly enough, this is not where the story ends.  They passed me in the produce section.  I was heading to check out and they were heading into the rest of the store.  Sports-bra girl was on the phone talking to someone.  I know this only because I could hear her.  Frankly, the entire store could hear her.  Just as they stopped, approximately 2 feet in front of me, Sports-bra girl reaches down and pulls what was either her undies or her shorts from her neither region.  And no, I am not referring to her hind area.  Seriously?!?!?!  You are in Wal Mart lady!  AND, no one wants to see this.  It was the most disgusting thing I have ever seen in the produce section in my entire life.  I wish I could say in public, but lets be honest, people just don't care anymore!  UGH!  and GROSS!!

So, I hope that you found my rants to be intellectually stimulating.  hahaha  While I am trying to stay positive, some days it is hard.  However, I am finding such strength and influence in the posts of Belinda Wright.  While she is going through difficulties with her own child, he continuous attitude is contagious!


*Please note, if I hear that any of you make millions from microwavable roadkill dinners idea, I will expect royalties! 

Wednesday, May 25, 2011

One of those days

So, I am having "one of those days".  While Wyatt is doing really well, I am not sure that I am.  I said earlier that I would post my PPD blog, and I promise I will, but today, I am in a funk and I just need to talk. 

The sun is shining, and I am not sure that I feel "bad" just eeh.  We went to PT this morning and Wyatt did really well.  He is gaining more and more strength in his neck and can hold it for intermittent periods of time.  I spoke with the therapist, Tori, about the possibility of Wyatt having Moebius Syndrome.  Moebius is often related to Poland Syndrome.  While I will not get into this syndrome, suffice it to say that I have had this lingering fear for several months now.  I ran across this syndrome while doing more research on Poland Syndrome one day.  Wyatt has almost all of the characteristics.  While I don't think he has a severe case of it, I am almost certain he has is.  We will see the geneticist in a few weeks and I will hopefully have a determination one way or the other then.  I haven't talked to many people about the Moebius because I am not sure if Wyatt has it or not.  It's a much scarier syndrome than Poland and I don't want people thinking that my baby is pitiful, we have enough of that. 

Anyway, off of the Moebius.  So, the sun is shining and I don't feel particularly bad.  I got up this morning and took a shower.  A huge accomplishment for me.  Not that I am nasty, but if you know me, you know that I use to bathe twice a day.  I just don't have it in me most days.  So, when I do shower and get out of the house, I do feel better. 

After PT we came home and here we still are.  On a lighter note, I did get outside and take some pictures.  My neighbor has the prettiest flowers.  He takes such pride in them and I adore that about him.  I just wish I was a better photographer.  I, like many of my friends, adore taking photos.  My daddy was an amateur photographer when I was little.  We had a darkroom in our home for years.  I think I take a lot of my self criticism from him.  He was always so critical of his work, but he was so amazing.  I, on the other hand, am not.  I starting taking photos with my very first camera at the age of 8 or so.  I still have a photo that I took of my cousin and a friend of the family that I took at a family reunion when I was 10 or so.  I remember being so proud of that photo when my daddy told me I did a good job.  I love the art of photography and long to be better.  I have taken classes at a local photography store, but I didn't learn anything different than what I already know.  My problem is, I want the perfect photo, every time.  I want to point and click and get the perfect photo.  That, of course is not reality. 

Anyway, so today, I sat outside for a bit "shooting".  I do not own a software to enhance my photos.  You get what I shoot.  Occasionally I will lighten or darken the lighting from a program on my computer, that was not intended for work such as this.  It does ok, but it's not "professional".  So, when I shoot, you get what I shoot, for the most part.  Here are a few from my day.

I love the turn of his head.  I just hate that I was not closer to him or had a better shot of him through the fence.


I was afraid at first that this little guy was stuck in the fence.


So I went closer.



Indeed, he was not.  And he hopped away.


So, the following are of flowers and such.  They are not great, so I warn you!  By the way, there will be more blog after the photos so hang in there for me! 














Ok, that's it.

So, today we got rid of another nurse.  Mike and I have had issues with her for a time, but yesterday was it.  I caught her suctioning Wyatt way too deep.  Mind you, this has been an issue with her in the past and she has been "talked to" about it before.  Anyway, I screamed and threw a fit.  So, Mike called and told them not the send her back here.  There is seriously just too much that we have dealt with this woman and we were not about to deal with her anymore. 

But, I did get out today.  We went to Wyatt's appointment and it went well and I took Roscoe for a walk.  It was so nice.  The weather was a bit cooler and I needed it oh so badly.  It's really the little things lately. 

I got an e-mail from my dear Rachel, from the office.  I miss Rachel and miss the office more than anyone will ever know.  While I know my job here is MUCH more important than that one was, it breaks my heart to not be there.  Rachel e-mailed me to give me information about a case that I had worked on.  It was so incredible to hear about the case, but even sadder that I was not there to hear the news first hand.  I know this is going to sound so silly and childish, but a part of me is sad because I have been replaced.  I mean, I know that everyone is replaceable, but with everything I just thought that maybe, just maybe, I would be irreplaceable!  :)  But alas, I am.  We are all really.  But I miss it so.  I miss my daily talks with Jon, about silly stuff.  I miss talking hockey with Bill.  I miss Keith asking me some silly question about pop culture, because I have too much useless knowledge of it.  I miss greeting Kimmy good morning.  I miss the sometimes silly conversations we had at lunch.  I miss it all so very much.  It made me feel useful. 

But, more importantly.  It amazes me how God puts people on the hearts of others when they need it.  I received the most amazing e-mails from not one, but two incredible friends and an hour and 20 minute telephone call from by best friend..  Angie's e-mail came when I was starting to feel that dark feeling.  The feeling where all I want to do is sit on the couch, under covers, and not think about anything, because thinking hurts.  Her e-mail was so uplifting and heartfelt.  It made my heart smile.  Then, I got a loving e-mail from Andrea.  Not only did she share her Pamper Points with me, but she shared a personal story.  Its so incredible to have these women in my life that I can get such amazing support from, from hundreds of miles away.  It's still oh so hard to deal with these things, but knowing that there are still people praying for us and thinking of us, makes my heart full.  I love you girls.  You really helped make my day.

My telephone call from Mel was much overdue.  It was one of those that you just talk and talk and talk and feel as though you could talk for 7 days straight and still not talk enough.  It is always so incredible to talk to your best friend.  We laughed and shed some tears too.  It's just what the soul needs sometimes. 

To top my day off, I downloaded some new music.  Music always makes everything ok.  Thank God for 69 cent songs on iTunes too!!

While I feel as though I could go on for days, I am going to end for today.  There are tornado warnings and I think I should go to "my safe place".  Dear God be with us!

Wednesday, May 18, 2011

News from the cardiologist

So, don't kill me.  I know how long it has been and I am so very sorry.  The PPD has seriously nearly taken over my life.  And while my doctor has given me medication, I have yet to take it.  Honestly, I am terrified of it and the research I have done on it doesn't make me feel much better about it.  Just suffice it to say that lately my life feels very empty.  I know that it is full, but I feel useless on most days.  I won't get into that right now, because I just wanted to give you a quick update from our Cardiologist appointment today.

Wyatt's weight is up to 15lbs 7oz!  YAH!!  It makes me so happy.  He is growing like a weed.  It's amazing.  He's in the 21 percentile for weight now.  It's like if you watch him for very long, you can see him growing before your very eyes!  It's incredible. 

Anyway, at the appointment they did an echo cardiogram to check his heart and stuff.  At birth Wyatt had narrowing of one of his arteries.  Honestly, I knew this, but with everything else, it somehow slipped my mind.  Anyway, he also had a hole in his heart.  Apparently this is the hole that every baby has.  The one that the baby gets blood from his/her mama from.  It should grow together within a few weeks, but Wyatt's had not as of a month old.

Today, we learned that at birth the narrowing of Wyatt's artery was at 13 and they like it to be below a 10.  However, today, it is at 7!!!  YAY!!  Great news.  Also, our doctor said that the hole was the size of a pin prick and was nothing to worry about.  She said that about 20% of the general population is walking around with this very same size of a hole in their hearts!  WOW!  She also said that she wants to see him at about 12 months old and if everything continues to look good, then there will be no need to see her, ever again! WOWZA!  That's incredible.  While I was never really worried about his heart, it is still one less doctor that we will have to see.  It's an incredible weight off of me. 

Also to update you, Wyatt has almost learned to roll all the way over.  While this may be delayed developmentally for most children his age, it's huge for us.  I think that if he were not on a ventilator with all of the crazy tubing, he would be all over the place.  His will to do things amazes me.  I know that all moms think their children are genius, but I know mine is.  His ability to learn things is astonishing.  You can show him things once and he gets it.  He loves to give you his hand to kiss or nibble (not with your teeth, but rather your lips over your teeth) his fingers.  We are still working on his smile, as it is once sided, but he smiles on the left side much more.  He has learned to talk with the trach.  At first it was just a noise here and there, but now it is incredible.  He has really learned how to talk around it.  It's so incredible for me.  I even got to hear him cry, which was so wonderful.  Have I mentioned that he got two teeth at 4 months?  Anyway, he has two teeth and I think he is getting another one.  I like to think that he is already an over achiever! 

Also, I ask that you pray for my sweet friend Belinda's son Trevor.  Trevor is 8 and was recently diagnosed with Leukemia and is in UK.  Her pictures of him always show a smile on his sweet face.  I know her struggle while living in the hospital and how how it feels to not be able to "fix" an illness our children face.  I think of them every single day and pray for them.  But, I just ask that you pray for and think of this family during this difficult time.

I promise I will finish a blog that I have started several times, but have failed to finish.  It talks so much about how depressed I am and I want to get that out.  PPD is nothing to scoff at.  It's seriously debilitating and I feel like if I talk about it I may feel better.  But, today is a great day and I just wanted to share our good news.  Below are a few recent pics of our angel that I want to share.






Saturday, April 16, 2011

Video of Our Miracle


Special thanks to JR and Sondra Riney for their thoughtfulness in making this for us.  It means so very much that words of thanks are merely not enough.  We love you so very much.

Tuesday, April 12, 2011

Day 72

Tomorrow we are going home.

It seems unreal that we have been here for so long. Most all faces of once strangers are now faces of new friends. The men and women we see on a daily basis now know Wyatt and our family. Smiles pop in and out of our room to check on us and to play with Wyatt. To say that my angel has touched many lives is an understatement. I will never begin to understand how the gravity of our "situation" has touched people. I will never begin to understand how much our journey has affected lives all over. That was never my intention going into this blog; more so to get my frustrations and fears out. I needed an outlet to cry and scream to, and this blog became that. It became my source of therapy.

The last few days have been really good. I feel ready to go home, but so scared at the same time. I would be worried if I weren't afraid, to be honest. Taking care of a child with a trach is a full time job, even with nursing around the clock. The constant care for a trach child blows my mind. However, I am so blessed to have been given the honor to be Wyatt's mom and to be able to be the one to provide this care for him. He is so laid back. Thank goodness he took after his daddy. He is such a "roll with the punches" kind of child. He never gets excited. When I am bawling over doing a trach change (which I don't do anymore mind you; crying that is), he never even bats an eye. He continues chewing on his hand as if nothing ever happened. I am so truly thankful that with everything we have gone through, he is so easy going.

With that being said, I want to let you in on one of my major faults in life. Ok, so there isn't enough time in the world for me to talk about my faults, but I want to talk about one in particular. You see, Wyatt has had a tough time sleeping lately. The doctors feel as though it is because he was on so many meds for so long that his body is just having a hard time sleeping on its own. Not necessarily withdrawals, but maybe kind of. It’s ok, but it will take some time. Anyway, Sunday night was a sleepless night for the both of us. I am learning very quickly that I can't sit and stare at him until he goes to sleep. He is so very good and it is ok for me to lie down if he is still awake. I mean, at home I have a video monitor and will be able to see him. Not to mention the nurse that will be there. Anyway, lack of sleep makes my mind do some pretty strange things. It always has. When I am sleepy, I am much more likely to think about things that I would otherwise not think twice about. Thus my major fault. So, I should preface this tale by saying that when I get sleepy, I have a hard time making my eyes stay open. It's really bad. If I am tired enough, I can close my eyes and that is it; I'm out. So, during my sleep deprivation yesterday, I convinced myself that I have narcolepsy. Yep, I said it, I convinced myself that I have narcolepsy. You see, I might just have hypochondria as well. Because, if I hear about something, I convince myself that I too have the same thing. Imagine what watching Rent did to me. Yep, you guessed it. I just knew that I had AIDS. It's terrible isn't it? And while I can't even begin to believe that I am telling this for the world to hear, when I was pregnant, as any pregnant woman, I had a hemorrhoid. Lord, I can't believe I am telling this. I am laughing as I type. So, instead of thinking that it was just a hemorrhoid, I was convinced that I had rectal cancer and I was going to die. I even went so far as to go to Mike crying because I thought I was going to die. It's true. I did. Now, mind you I have read the pregnancy books warning of this, but never in a million years did I think it was something as simple as this. My mind automatically goes there. It’s so bad.

Ok, now that I have shared entirely too much with the world (I still can’t believe that I just told the world that I had a hemorrhoid) I want to tell you about Cathleen. Ms. Cathleen is an RN here at VCH. She works for the PICC line team. Since Wyatt’s PICC line was put in, she comes in every day, Monday through Friday, to see him and check the dressing around it. Since she is one of the only people I have seen with regularity, we have become very friendly. She’s one of the sweetest people on this earth. She’s like my Nashville Bon-Bon. Anyway, we started chit-chatting one day about genealogy, which we both adore. She has been a constant for me during our stay. However, I want you all to know that she when she comes, each and every time, she prays over my baby. She lays her hands on Wyatt and says a pray for him. This simple act of faith has carried me so far in this journey. Knowing that there was a spirit in this place who took the time out of their work day to come and pray for my child has done so much for my faith, especially during this time. I pray that when we do go home, if I am able to keep one relationship out of all of the incredible people we have met, that she is the one I am able to stay connected with. She has truly touched my life.

I want to devote an entire blog to Wyatt’s Wishing Well so I won’t talk much about that here. I do want to say that I have never been touched by something someone has done for me more than I have for the event that was Wyatt’s Wishing Well. It makes me so proud to be from Eastern Kentucky, where neighbors still love one another. Where people will go out of their way to help each other, even when it is for someone they don’t know.

Wyatt is napping and I am seriously thinking about having one myself. Tomorrow will be crazy so you probably won’t hear from me. In the event I have a moment, I will bring you up to speed on the day’s events. Wish us luck for our journey ahead. I’ll keep you in the loop though, don’t worry!

Crud.  Naptime is over.