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.