Friday, December 28, 2012

Christmas in Pictures

Christmas was great in this family!!! We had a wonderful time spending it with family and of course our little miracle Alayna. I made sure to make Maria feel special and wrote her 3 letters.  They are worth the read!!  Here is a few of the photos that I took.  Enjoy!!!

Proud Grandparents!!! Yes that is my Dad dressed as Santa :)
I loved this little ornament!!
This is a special gift that I got Maria and she wanted me to share it with you on blogger!!
Stone #1 is my birthstone March
Stone #2 is Maria's birthstone August
Stone #3 is Alayna's birthstone October
I loved this note that Maria wrote me!!!
I hope everyone had a wonderful Christmas!!! We sure did in this family!!!


Tuesday, December 25, 2012


Merry Christmas everyone!!! I hope my readers are spending time with the people they love on this special day.  In our house, we have so much to be thankful for!!!! We have received the greatest gift we could ever ask for this year and for years to come.  The birth of our miracle Alayna is something we will cherish for the rest of our life.  I am still in shock that I am able to write that statement.  I honestly feel that I am living a dream every day I hold and look at Alayna. 
This is a very special day in our house as we celebrate Alayna’s first Christmas.  I will be back on blogger with tons of photos I am sure.  I will leave you with our Christmas card photo!!!!  I hope you all have a wonderful Christmas!!


Tuesday, December 18, 2012

What an EVENTFUL Week In Our Household!!!

Another week has passed us and it has been an EVENTFUL week.  It was a busy busy busy week as always in our household.  Alayna turned 2 months and Maria still has to deal with health issues related to the birth of our miracle.  So since I already informed everyone about Alayna’s progress in her 2 month development this post will focus all on Maria. 

I know there are a few expecting mothers out there who read this blog so what I am about to share doesn’t happen to everyone or in the least bit to anyone.  All these health issues related to giving birth happen to the minority of people and NOT the majority.  So I hope you will find comfort in that statement.

Where to begin……….well I guess I will just jump right in.  There are many of you who have been following this blog and are pretty familiar with our birth experience.  But for those of you who are new to my blog or have forgotten what Maria has been going through I will summarize briefly.  During the delivery Maria was told she would have basically an emergency c section.  They didn’t classify the c section as an emergency but it might as well have been considered one.  Before the c section took place, they had to place an evil folly catheter.  Maria was not comfortable at all during this and the nurse who administered the catheter basically used a lot of force.   Sadly, she has had to deal with many bladder issues from bleeding to pain to you name it.  We had gone to many doctor’s to see if anyone could give us an explanation on why these issues were still occurring almost 2 months after Alayna’s birth.  One doctor said that all these issues are normal another doctor said the bleeding was caused by force when inserting the catheter etc. But Maria remained persistent because she was still not feeling like herself. 

She contacted her regular OB as she was scared another health issue was occurring.  Maria was very concerned as she started to feel a lump in one of her breasts.  If anyone has ever breast fed their child before you know that you can develop clogged ducts and that was what Maria was thinking it was.  But Maria was unable to work the lump out of her breast and decided it was time to see the Dr.  She informed her Dr. of what was going on and he told her she needed to have an ultrasound to rule out what this lump actually was and to see if the lump needed to be drained.  Also, during the appointment she told the Dr. she was still having bleeding and discomfort.  The Dr.said that it isn’t normal to still have these problems almost 2 months since delivery.  He ordered Maria to have an ultrasound to determine if there was still placenta in her womb.  REALLY!!!!!!!!  I am unsure if I mentioned this before but Maria did have an extra lobe to her placenta and she made sure to ask the OB who performed the c section to remove the entire placenta.   The Dr claimed it was all cleared out and there were no remains of the placenta. 

The ultrasound on Maria’s breast revealed there was a lump and that they needed to proceed further on the testing of the lump.  Maria called me with tears in her eyes as the ultrasound doctor informed her that the lump was irregular shaped and that she had to be seen by a breast surgeon that day.  They wanted to rule the big C word CANCER.  Thankfully, after meeting with the breast surgeon she stated that it was most likely a clogged milk duct.  Later that afternoon Maria had the duct drained and it was not very pleasant at all.   I will spare all the details but it had to deal with a FEW needles being inserted to help drain this clog. Thankfully, the lump was not cancerous!!!  All I can think of is that my wife is one true warrior.  

Also, that day Maria was scheduled to have an ultrasound to determine if there was still placenta retained from Alayna’s birth.   We rushed off to the next doctor appointment and the ultrasound was performed with a follow up visit with the OB Dr.  During the ultrasound, Maria and I both noticed something in her womb that looked like blood flow.  It looked like the blue and red glow on an ultrasound and all I could think of is that it didn’t look normal.

As soon as the ultrasound was complete we met with the OB Dr.  The first thing that came out of his mouth was I am sorry I have some sad news for you Maria.  My heart sank I knew the placenta was still in there.  Maria then had to decide when they would perform the DNC to remove the remaining placenta.  She chose last Friday to allow her the chance to rest and recover from all the negative news we received in one day. 

Friday, came and it was surgery day to remove the remaining parts of the placenta.  The surgery went very well and the Dr. informed me that he removed multiple parts of the placenta. We were discharged later that afternoon and eventually had to come back to the hospital ER as Maria was in a great amount of pain.  They sent us home with pain medicines and by the end of the weekend a lot of the pain had subsided.    So hopefully that will put the bleeding issues behind us!!!

The worst part of all of this is I am the one who is use to being sick and it has killed me to witness my wife battle these last couple months.  But I have said this numerous times on my blog and I will say it again.  My wife is one heck of a woman.  She has shown me her true character and determination during the toughest times and I am so thankful I have her in my life.  Nothing we have experienced is typical at all but I believe soon we will put all these issues behind us and move forward with our incredible life.  Just looking at Alayna we know it is all worth it in the end.  She is a miracle and the greatest gift we could ever ask for in our life. 

These two girls are my world!!!

Wednesday, December 12, 2012

Alayna 2 Months Old Today!!!!

Alayna hit the two month mark today!! I can hardly believe that I am typing this! Just to think our little miracle is already two months old it is mind blowing.  To be honest, if I could have 10 little Alayna’s I would in a heart beat.  She is just so amazing every single aspect of her.  From her sweet little cry to her adorable facial expressions when she sleeps. 

Alayna is growing growing growing and growing!!! There is something so special when you see your little baby growing in front of your eyes.  I tell her she isn’t allowed to get big and grow up.  But the reality is she will be growing up faster than I want her to.  Just looking at pictures of Alayna when she was first born to where she is now its hard to remember she was that small.  Alayna continues to plump up and now weighs over 10.5 pounds and has to be approaching 24 inches.  Every time I hold her she feels like this long string bean.  She is all torso and legs.  There have been times where Alayna will fully extend her legs against my chest and I have to extend my arms out. Soon Alayna will not be able to push off of me without her running out of room on my arm.  So that puts her length into perspective for you all.    

Alayna is developing this crazy sense of strength.  From her pushing her legs against me to holding her head up off of my shoulder.  In Alayna’s first couple weeks of life, she would put her head on my shoulder or on my chest and just keep it there without a flinch.  Now, she is to the point where she will hold her head up and look around.  I guess your neck is getting stronger and stronger by the day baby girl.  She is also developing this intense sense of grasping on to things ESPECIALLY, long hair.  Sorry Maria and to every other female who visits Alayna.  If Alayna sees your long hair watch out she will grasp it and hang on for dear life.  I am just glad I do not have to worry about that : )

This past weekend, Alayna has started to communicate. Her communication format is in the form of baby babble, smiles, and putting her arms out.   When I was changing her diaper I started talking to her like I always do.  Most of the time its about how daddy and mommy love her or some random made up song that I sing.  Yes I make up songs and they never are the same ones at all.  But anyway I was talking to her or singing to her and all of a sudden she looked at me and started babbling and smiling.  I yelled for Maria to get the video camera as Alayna continued to be responsive to me for about a minute.  This was one of the best moments because one we had it captured on camera and two this was the first time she was ever responsive to anyone.  She melted my heart just by doing random baby talk and smiling at me. 

Alayna loves loves this play mat that we received at our baby shower.  It is used for tummy time and for her to be on her back and swat at the toys that hang.  The mat also has this little piano at the bottom and when her feet get to kicking the piano plays random music. I love it when she gets excited and has her arms and legs moving and kicking and this toy brings her so much excitement.  She does the cutest thing when she sees herself in the mirror as one of the toys on the mat has a mirror.  She will stare at the mirror and start to babble.  I LOVE IT!!!

Maria and I continue to marvel at how amazing Alayna is!!!  Not a day goes by that we do not talk about something she has done or how big she is etc.  So another month in the books for Alayna and another month in the books for the new parents.  It is going so fast and I wish sometimes we could actually slow the time down.  I will leave everyone with some pictures of Alayna in her most recent photo shoot courtesy of my sister in law.  Thanks again Angel for taking these pictures they always look great!!!

                                                She has her 2 month sticker on!

I love this photo of her. She is so happy!!!

By the Christmas tree.........I cannot believe Maria had a baby 2 months ago.
You would never tell she even had a baby! She looks fabulous!!!!

Alayna loves to be in her diaper!!!

Sunday, December 9, 2012

Please Help Make A Fibro's Wish Come True!!!

I am not sure if you heard of this little man yet but he is one strong fibro.  His name is Dalton Dingus!!! I have seen a few photos of him on FB and other sites and he looks like he is full of life at 9 years old!  Dalton was recently sent home as the doctor's said there was nothing else they could do for him :(  The doctors gave him a couple weeks to live.  Dalton told his mom he is ready to go because he is tired :( Just typing this breaks my heart in to a hundred pieces.  I am lost for words.  I do not know anything about him but I know he has to be one hell of a fighter.  I hate that this disease will take Dalton way before his time.  Please keep him and his family in your thoughts and prayers.

Dalton's wish is to break the Guiness World Record for most Christmas Cards.  That record is an astonshing 35,000.  According to the second link he has 23,000.  Please when you sit down and write out your christmas cards consider sending an extra one to this incredible fighter Dalton!!!

Dalton's address is in the links below.

Tuesday, December 4, 2012

Need A Little Motivation?

I need some motivation when it comes to exercise. It’s not that I do not have any motivation in my life.  I have to say that I have the biggest motivator’s in my life in Maria and Alayna.  For me, saying I have motivator’s in my life and actually exercising are two different things.  I really really really need to increase the amount of exercise in my life.  So here is to hoping that changes soon!!!

But if these people in this article do not motivate you to get at least 15 minutes of exercise in every other day then I don’t know what will.  The article is old news but I just recently found it online and loved it. The article is about the famous Olympian Oscar “Blade Runner” Pistorious and another little girl Ellie who is just as amazing as Oscar.  The both of them have something in common which is amputation.  

I cannot imagine my life without the ability to freely walk wherever or whenever I want to. We should never take the ability to freely move around for granted people!!  Oscar and Ellie are truly an inspiration!!

Below is the link to the article.  It is worth clicking the link to see the pictures if nothing else. The old adage…………. “A picture can say a thousand words!!!”


Friday, November 30, 2012

Where have I been..........Here is a weekly update!!

I haven’t blogged in over a week now and I am due to give an update.  To be honest I miss it!!!  So here is what has been going on in the past week.

If you have been following along, you would have read that my grandfather passed away the week before thanksgiving.  We had the calling hours and burial last week.  Everything went really well during the burial.  It was the first time that I actually witnessed a service burial.  I mean service in regards to my grandfather was a marine. It was really impressive to see a burial of this type.  They had some guns fired and taps were played as well as the folding of the American flag.  Thanks for your service to this country grandpa and to all the other men and women who are serving today.  

When we were at the cemetery witnessing the burial my brother said to me “Hey did you know that mom’s cousin with CF is buried next to grandma and grandpa?”  I had no idea of this.  I was determined to find David’s cemetery stone.  As we were about to head for the car I found David’s plot.  It had his year of birth 1954 and the year of his death 1985.  It was kind of unreal to see his actual year of death.  In 1985, that was the year I was born.  Maybe David is living through me!! Hey you never know. David had to leave this earth but he didn’t leave without making his own mark.  I was told he was a successful lawyer and he had one son with his wife who they named David.  But anyway, I stood above his grave stone and talked personal thoughts to him nothing spoken out loud with a tear in my eye.  That’s right a true man shows his emotion!!  I did state that we are so close to having something impactful for everyone in the CF community through hopefully Vertex pharmaceuticals.  I told him I will never give up and I am fighting everyday to be on this earth as long as possible!!!

After the funeral, we had a lunch gathering at my parent’s house and we brought Alayna with us.  This was the first time she was around a large crowd.  We weren’t sure how she would do but she was excellent. She slept through the entire lunch.  Even when people were holding her and passing her around she slept.  I guess she is one hard sleeper.  She must take after her daddy.  

The next day was thanksgiving and we stayed home and had our own little thanksgiving.  Maria is one phenomenal cook let me tell you.  I have to say it was one of the most delicious thanksgiving meals I have ever ate.  We had my brother in law and sister in law as well as our niece Kendal and my father in law for the meal.  My parents came over that night after they had thanksgiving which was nice.  For once we didn’t have to travel to a zillion houses on a holiday.  

As for the Black Friday shopping, we didn’t do any of that.  When you have a newborn sleep is way more valuable than saving a few bucks or freezing your butt off in line outside a store at 4 am.  But we did get out to a few stores over the past weekend. In fact we went to Wal-Mart and had one of the most hilarious times with our sister in law and brother in law.  Does anyone remember those awesome pjs that were zip ups with those anti skid feet?????  Well they had them at Wal-Mart for adults and Maria and my sister in law dared us to get in them.  So I took a pair down and put it on.  They were cookie monster ones which were so cool  It was very snug lets just say that.  But we had many laughs and lots of photos.  In fact we even had a Wal-Mart employee pose with me and my brother in law.  I honestly will not forget that night for a long time.  We even bought the pjs so we could create a family photo with them.  Maybe I will post a picture once all 4 of us have them on.  

Alayna, is doing great she is growing like a weed.  I mean literally she is so long.  I cannot believe it.  I am not really sure where she is getting this height thing from though.  But hey she will not complain once she is older.  As for her development she is able to follow me now.  I will move from one side of her fast to the other and she will move her head and follow me with her eyes.  I love her more than words can express that’s for sure.  I miss her when I am with out her.  Especially when I am at work.  I cannot wait to get in my car and head for home to see Alayna and my wife.  It is the best part of my day!!!!

Lastly, how many of you married folk out there get to hear your friends talk about their dating life??? I do. Most of the time it deals with their dating drama and all this stress etc.  I am just so glad I am not in the dating world because some of the stories I hear are just so bizarre.  I am so thankful that I have found my life partner in Maria!!!  She is everything that I could have ever asked for in a wife.  I never take a day for granted with her.  She is my rock in life that is for sure!!! Love you babe!

I hope you all have a great weekend!! I will be back to post more topics in the coming days as I have some good topics to write about : ) Stay tuned…………………….

Alayna loves this thing!!! I don't know if you can tell in this photo but she is super long!!!

Thursday, November 22, 2012

HAPPY THANKSGIVING!!! What are you thankful for?

Happy Thanksgiving to everyone!!!! On this holiday, it is more than just stuffing our face full of turkey to no end. It's about taking the opportunity to reflect on the many blessing we have been given and what we are truly grateful for in our life. Here is my list of blessings and what I am thankful for this year!!!

This is really in no specific order but I would like to give #1 a tie to both Alayna and my beautiful wife Maria.

1.      Our little miracle Alayna - Just typing this on my blog gives me goose bumps. To think of how far we have come to have our miracle in our life it is just unbelievable. She is the BEST thing that has ever happened to me minus Maria of course. Every time I hold Alayna I just feel so blessed to have her in our life.  I cannot imagine life without her!!!

2.      My wife Maria – Maria is my soulmate and I believe that when god created her she was created to be my partner in life. We have been through a lot in life together and she is not only my wife but my best friend.  There is no better person in this life to have by my side than her. She understands me, she even thinks like me and best of all she cares more about me than anything in this world minus Alayna :)  Through this past year she has shown me that no matter what happens in life we will get through anything.  Going through IVF and the PGD process it has brought us even closer in our relationship.  Maria, I am so blessed and thankful to have you in my life. I LOVE YOU!!

3.      Family – Maria and I both value our bonds with our family.  We live very close to all of our family which makes it easier to get together for holidays and birthdays.  The holidays are meant to be spent with the ones you love and we love our family.  They have been there for us through everything we are very blessed and thankful to have them in our life.  Also, today is a day where we can reflect on the memories that were made with the family members who have passed away.

4.      CF Clinic - I feel that I have one of the best doctor’s that anyone could ever ask for.  He is so dedicated to his practice and you can just tell how much he loves his patients and his commitment to cystic fibrosis.  To be honest, if it wasn’t for him and the nurses I do not think I would be as healthy as I am today. I will always remember that the day that I was diagnosed with CF, my father was determined to find the best doctor in our area and I know he found him.   Thanks again dad and I will never forget that!!!

5.      Cystic Fibrosis Foundation -  I think all of us fibros and cysters are thankful for the foundation.  They have added many tomorrows to our lives.  Just think of how far we have come through all the fundraising events that they do.  I cannot thank you enough if you have ever donated to the cystic fibrosis foundation.  They have been instrumental in  funding the work that is being done at Vertex Pharmaceuticals.  With the drug Kalyedco approved it is only going to be a few years I am hoping till they have something to the market that will help many other fibros and cysters.  If anyone is wondering what Kalyedco is please read this

6.      IVF/PGD -  If it wasn’t for this amazing technology we would not have had our miracle Alayna.  We are so blessed to have access to such a great opportunity.  Thank you god for creating these wonderful doctors, nurses, scientist who work every day creating miracles for couples.  The work that you do does not ever go unnoticed.  Thank you again and again from the bottom of my heart. 

7.      Cysters and Fibros having children – Yes, I am so thankful for my fellow cysters and fibros who are expecting children in the near future!!! Speaking from experience it is more than a blessing to receive the gift of a child. These people I could not be more happier for as the first two couples have went through IVF just like Maria and I did  Jeremy and Monica Parks  and Megan and David Murray.  A cyster that I know is also going to experience the greatest gift as well Cindy Baldwin.  Also, for those of us cysters and fibros that have children I could not be more thankful to know you  Inhaling Hope and Ronnie Sharpe.  Just think we are defying the odds everyday!!!!!

8.      Organ Donors  -  I am very blessed to be an organ donor and I am thankful that people are willing to live on through others by donating their organs.  In fact recently, while I was attending my grandfather’s funeral I was informed that he donated his corneas to an individual who is blind.  What an act of kindness grandpa!!!   Also, I know of cysters and fibros who have been saved by lung transplants who are getting a second chance at life  to be with their loved ones!! It is just amazing that we have the opportunity to benefit from organ donors and also help other families if we are organ donors are selves.  I want to mention a cyster who has been listed on the transplant list for the second time.  Yes, she received her gift of lungs a few years ago but is now in very poor health and needs another set of lungs.  I am praying for her husband and children.  If you haven’t read her story please take a moment to it is very touching on how much this family has endeavored. The blog is called Confessions of A CF Husband.

9.      Airway Clearance and HTS -  Just think where we would be without our  airway clearance devices we have today.  For me it has made a world of difference.  There is nothing better than feeling your lungs clear.  Hypertonic Saline has improved my airways for the better and I am so thankful that there is something out there that works for me to help get that mucus out!!!

10.  I am thankful for YOU!!! -  You may be wondering what I am talking about but it reads how I meant it.  For anyone out there who reads my blogs and enjoys reading my life I commend you! : )  For the people who read every blog post I am very appreciative.  I know there are readers who read this blog every post but never leave me comments. But I love to hear what people are thinking when they read my posts.  So if you are a consistent commenter on here thank you, I enjoy reading and responding to all of you.  For those of you who have never commented drop me a line and let me know what your thoughts are.

Again, I love this CF blogger community and it has really opened up my eyes of how my fellow CFers live their life.  Having this disease isn’t much fun but when you read and follow other people’s journey you know you are not alone.  I have met through my blog some of the nicest people I have ever met who are similar to me in one way or another.  I hope that one day we can all meet in person once this disease is cured!!!! We can have a “cure found” party.  I know it is right around the corner!!

So I hope this post finds you all doing well and healthy.  Hopefully you are/were enjoy thanksgiving with your families and have had the opportunity to take a minute and reflect on what you are blessed and thankful for!!!
Alayna's shirt reads "Thankful For Mommy"
I couldn't agree more Alayna!!!

Monday, November 19, 2012

A week and weekend in review!

There is always something going on in our household that is to say the least.  So I figured I would share an update with you. 

This past week my grandfather passed away from lung cancer :(  Thankfully, he was just diagnosed last month and suffered vey little in his passing.  He was the kind of grandpa who was quite but he had the biggest heart.  He loved his little bichion frise and would talk of her all the time.  My grandpa has joined his wife, my grandmother now in heaven.  They actually both passed away from lung cancer which is kind of ironic.  I wish though that they knew how detrimental smoking was 50 years ago.  Another reason why I hate smoking, it takes your loved ones away sooner than later!!!

The calling hours are this Tuesday and the funeral arrangements are going to be Wednesday.  Then its on to Thanksgiving on Thursday.  So it will be a very very busy week in this household.

The other day Maria and I were talking about how many deaths we have experienced in the last 2.5 years.  We counted 7 deaths!!! To me this seems unreal.  In this total of 7 includes grandparents, aunt, great aunt and great uncle.  All of these individuals we were close with.  All of them have been missed very much but we just focus on the memories that we made with them. 

I love the place that I work.  Not because of the work.  Well I do like my job so that is always a plus.  But I have to say we have some of the greatest employees at my company.  They are all really down to earth people and they become your family.  Seeing that I spend 40 hours a week with them they might as well be considered my second family.  I was sad to see an employee have to leave our company this past week as her contract had expired.  Brenda is one of the sweetest and most down to earth individuals I have ever met at my company.  I even opened up to her about my CF.  There are very few people that even know about my diagnosis at work.  I like to keep it that way but I may change this stance sometime.  But anyway, she always loved to hear the update on the pregnancy, my health, and various other topics.  You will be missed Brenda and that corner will never be the same without you.  However, I still plan to keep in contact with her. 
This weekend Alayna had her one month checkup!  Talk about how time flies.  I still cannot believe she is almost five weeks.  Her appointment went very well.  She was weighed, measured, examined, and given a shot.  To be honest, I could not watch her receive her shot.  But she did exceptionally well only crying for less than 10 seconds.  It was funny becaue Maria said you were a big girl today Alayna and you get a prize.  She said to Alayna you get milk as your special surpise.  Alayna loves eating so I know she was happy!!  As for her weight and lenghth.  She is now 8 pounds and 9 ounces marking a total weight gain of 28 ounces in 4 weeks and is now in the 25-50 percentile in weight.  When she left the hospital she was in the 10 percentile in weight.  Looks like someone is packing on the pounds. Alayna measured 21 and 3/4 of an inch marking a gain of 1 and 3/4 of an inch and putting her in the 75 percentile in height.  Look at you Alayna you little green giant.  Our next appointment is in another month and she will have more shots and she will be measured and weighed again.

Now on to my beautiful wife Maria.  She is still battling bladder issues.  I just pray that she eventually gets through all of this so she has no more worries.  It sounds like she will be heading back to the doctor's to see if they can figure out what is going on.  Maria thinks she may have kidney stones but we will see.  I am just keeping my fingers crossed that they get to the bottom of this sooner rather than later. 

So that is a wrap!! It has been a busy time in our household to say the least.

Of course I have to post pictures of Alayna as always! Is anyone tired of seeing her yet??? :)  I am not though!!

Thursday, November 15, 2012

Alayna.......Already 1 Month Old!!!

Today, November 14  marks Alayna's 4 th week of life!!! If this is any sign to come on how fast time goes when you have a child I think she will be one year old in a blink of an eye.  Let me just state that Maria and I have loved Alayna before she was even here on the outside but since she is with us that love for her is unspeakable.  We both could not imagine life without her now.  She has consumed every part of our heart, our time we spend together, our thoughts, and even our sleep. 

Alayna though is a very good sleeper.  She only wakes when she has a dirty diaper or is hungry. On most days she will give us a good 4 hours of sleep before she cries to let her daddy know its time to change her diaper.  Yes, I am one of those dad's who gets up in the middle of the night and changes their child.  So give me some credit for that. Not saying I deserve it but I have heard stories where it is all placed on the mother's shoulder to get up all through the night.  Maria and I though have actually been sharing in all of Alayna's diapers.  We have a schedule I change her on weekdays when I get home from work until the time I go back to work.  So my shift is from about 5 pm to 7 am. Then Maria takes over until I get home and trust me she lets me know that she appreicates when I come through that door. 

As far as Alayna being feed that is all Maria.  I change the diaper and hand her off to be breast feed so I am out of the feeding equation.  But we have already started Alayna on feeding from a bottle and she takes it just fine.  We started adding probiotics in a little breastmilk to help with the diaper rash that she had for the last 3 weeks.  Thank God your diaper rash is getting better Alayna. 

Also, Alayna loves to suck.  Well imagine that she is a baby.  We were told by everyone if you plan to breast feed no pacifiers. I was in agreement on that but I actually gave in when we were in the hospital.  If anyone has ever heard of cluster feeding that's when we had to give in.  But she loves her sucker thats what I call her pacifier and has no nipple confusion at all.  I guess we are pretty thankful she takes anything a bottle, a sucker, and loves to breast feed.  

We have noticed that Alayna is growing and gaining weight especially when I look at the pictures that we first took of her.  She still however fits in newborn clothes but she is almost getting to big.  She was born weighing 6 pounds 9 ounces and left the hospital at 6 pounds even.  She now weighs about 8 pounds 9 ounces.  Alayna loves to eat as you can tell.  She takes after her dad!!  We can also tell that she is getting longer as well but we have not measured her.  This weekend she will be going to her 1 month checkup so we will get all the offical measurements. 

Alayna loves to look around but she also finds something in a room and focus in on it.  I know for one thing she loves what I call Mr. Fan.  We basically have a ceiling fan in every room of the house and it seems like her eyes always gravitate to them.  If she is upset I will hold her up and say look at Mr. Fan you love him. I know I am nuts.  But not only does she focus on the fan she will just stare off and look at something. I try to get on her eye level and look at what she is viewing but sometimes I really have no idea what she is locked in on. 

Maria and I could not be more happier right now in our life holding our little miracle Alayna.  We just cannot imagine she is a month old now!!!!!! 

As always I have pictures to share.  These photos were taken over the weekend by my sister in law.  I could have posted 50 photos but I narrowed it down to 4. 

Saturday, November 10, 2012

Doctor Appointment Updates Urologist & CF Clinic

It was a very busy morning in our household.  If you read my prior post I said I would update this weekend on how Maria's appointment went as well as mine.  Well here you have it.  The first stop was to Maria's urologist.  If you didn't read the prior post, Maria setup an appointment with the urologist to see if they could get to the bottom of her blood in the urine.  The blood in her urine all started with her c section as they had to use a foley catheter.  If you missed it, the nurse put Maria's catheter in with a lot of force : ( So we assumed something was damaged in her bladder due to the unexcusable force that was used to place the catheter. When Maria setup the appointment with the urologist she described all her symptoms and she asked what would happen if there was a damage to her bladder.  The nurse said surgery would be required!!!!

We met with the doctor and he said he was going to have to use a camera to see where all the blood was coming from :(  That doesn't sound to pleasent does it??? The doctor numbed everything up and inserted a camera and away they went looking to see what was in her bladder.  He looked all around the bladder and discovered these little cuts that looked like scratches!!! He claimed it could have been caused by Alayna's head as she was coming down the birth canal or most likely the catheter.  Maria and I both said it had to be from the catheter.  The doctor said that these little cuts/scratches should heal on their own.  So that meant NO surgery!!!! Thank god! Talk about a load off our shoulders.  Finally, some good news!

Then it was off to the CF clinic.  The focus of my appointment was mainly on Alayna's birth and showing pictures of her to everyone in the office :)  But of course we did focus on my CF care.  I did the usual sputum culture and I was able to cough up a nice glob of mucus for them to send to the lab.  The doctor then listened to my lungs and heard nothing rattling around.  I usually never have any junk that is rattling around though so I always get the "You sound great John" from the doctor.  I then was weighed and given a pulse ox test.  Everything checked out on the pulse ox and my weight was stable.  Since I had yet to have my flu shot the nurse gave me the shot.  She was probably the best shot giver.  I didn't feel it all.  But of course as I type this I feel like a little kid punched me in the shoulder.  That will pass though so its all good. 

Now on to the PFT.  My doctor looked through my records and said you had a PFT last time you were here. So NO PFT today.  Well I was kinda glad I didn't have a test today because I didn't do any airway clearence this morning or my hypertonic saline.  I know BAD John!!! But that is what happens when you have extreme exhaustion from a newborn.  To be honest I set both my phone alarm and my radio by my bed and I didn't hear either of them go off.  Luckily, I was able to get up on my own at 6:30 am.  This is the time I get up to go to work so its basically programmed in my body ;)  I only had enough time to eat a small breakfast, change Alayna's diaper, let the dogs outside, and get dressed.  We had to be in the car by 7:00 am so I had to sacrifice the VEST and HTS.  But I made up for it when I got home.  I still fit in two treatments for the day!!

We are just so thankful that Maria does not need another surgery!!!!!!! My appointment went well also but it made for a very long day and we did it all without our baby girl.  Alayna was in good hands with her grandma.  We were gone for over 5 hours from her and it felt like forever.  I guess it was our first date.......I wouldn't call it a date though going to two doctor appointments.

I hope everyone is enjoying their weekend!

Alayna with her big smile! She is happy that both her Mommy and Daddy had good Dr. appts.

Thursday, November 8, 2012

C section aftermath continues...........and Doctor Appointments

Tomorrow is going to be a BIG day in our household.  The aftermath of c section continues for Maria which is really unfortunate.  Before Maria had her c section they placed one of those AWFUL foley catheters.  I have never experienced one but I guess people call it the necessary evil.  For some people, who have these placed they can develop infections or can even cause damage to the bladder.  Well it looks like Maria has something going on from the foley catheter they placed 3 weeks ago which is unfortunate.  She has had a few tests to see if there is a urinary tract infection but the tests come back negative.  The tests do however state that there is blood in her urine : (  So it is now time to go to the urologist to see if they can help solve the problem.  Before making her appointment she talked with a nurse at the urologist and Maria described what was going on and the nurse informed her if something is damaged you will have to have surgery!!!  REALLY, another surgery?!?!?   Please keep her in your thoughts and prayers on Friday!  I hope that she does not have to experience another surgery anytime soon.  

As for me, I will be heading up to my CF clinic once Maria’s appointment is done for my check up.  I still need to get my flu shot so hopefully I can accomplish that tomorrow.  I am scheduled for a pulmonary function test (PFT) and I am hoping the results of that show that I am maintaining my lung function at least at my baseline levels. It is always a mental battle for me during a PFT.  

If you recall, from a few prior posts, I have been on bacterium to tame down a cough I developed while at the hospital.  It seems to have worked and I am not experiencing increased cough or chest tightness. Since the election is over, I will be asking my doctor about the impacts of Obamacare on the CF community as well.  I always love talking to him and hearing his viewpoints on things.  Anyone talk to their CF clinic about the possible impacts of Obamacare????

Anyway, we are hoping that we have two good doctor’s appointments tomorrow!!! I will update everyone over the weekend.  Enjoy the weekend everyone!!

I just love those eyes of yours Alayna!!!

Wednesday, November 7, 2012

Favorite Way To Get Mucus Out..........Continued

As some of you may recall, I did a post on my favorite way to get mucus out.  I would like to add to the list of shows that I watch to help get that junk out of my lungs.  If you are not watching this show you are truly missing out on one of the greatest shows on television today. You know a show is really good when you look forward to it every week! But also this show is one where you can jump in at any time in the season and watch.  So you do not have to watch the first episode of the season to understand the show. 

Since I held everyone in suspense…………….. That show is Duck Dynasty! As Maria calls it the beard people. It is by far funnier than Modern Family or Honey Boo Boo. If I had to describe the show to someone I would explain it like this.  I really don’t know how to explain it though………… Just imagine you make duck calls and are wealthy and live in the sticks in the bayou.  But their redneck ways never leave them.  They love to live off the land and hunt ducks and other sorts of animals.  The idea of family is very big in this show as the show develops all the relationships between the Robertson brothers and their mom and dad.   The sayings in the show are to die for as well!!!  

Cysters and fibros if you are looking for a way to move that mucus out of your lungs without using your VEST, check out tonight’s back to back episodes of Duck Dynasty on A&E at 10 PM eastern time.  I guarantee you will be laughing and coughing that junk out : )  I hope that you all turn this show on tonight because it will not disappoint!!!!!  Let me know if you decide to watch it and leave a comment letting me know what you think.

If you have been watching this show let me know who your favorite character is!

In our house we love “Uncle SI” especially the episode where he makes everyone his “Nam Special” in the RV.  Maria and I have watched that episode almost 20 times and still laugh over and over again.  

Monday, November 5, 2012

My CF Health Update.............Finally!!

I know my blog posts have lately been all about our labor experience and our beautiful daughter Alayna and why would they be anything else.  But I would like to inform all of you about my CF status.  So here it is…………..

Over the last couple of months, I have been feeling really great!  I think I need to give credit where credit is due and that credit goes directly to my friend Mr. Salt.  I have blogged about it before but I LOVE HTS!!!  If you are not using HTS as a part of airway clearance I suggest next time you are at your CF clinic to ask about trying HTS for a month.  I guess I could be a sales rep for this drug :)  I never regret trying HTS at all! This stuff makes me feel like a million bucks and I noticed it when I was staying in the hospital with Maria and Alayna. 

I spent every second at the hospital. So that meant I brought every single thing I needed to the hospital.  Maria said it looked like I was moving into the hospital with all the stuff I brought with us.  I had way more stuff than Maria packed and she was the one who was going to deliver a baby.  But that is what happens when you go somewhere with a CFer.  Your CF never leaves your side!! So guess what, I lugged my portable VEST, my nebulizer machine, my HTS, and my flutter to the hospital.  Plus not to mention all the pills I would need for a few days.  I give credit to Maria for packing all the pills.  She did a great job and I had plenty of pills to last me a few days.  Isn’t it great knowing that your spouse knows all the meds you take??? I love it!

In my prior post, about our labor experience you can see how stressful things were for us.  I hardly slept for over 2 days in the hospital due to the excitement of our baby girl and just being overly busy with everything. Oh and not to forget this the bed they had for me was like sleeping literally on springs.  I actually laid pillows across the supposed bed to get some comfort.  I was exhausted and my treatments suffered from it.  I missed a few treatments in a row which was ultimately foolish.  I felt like I had a massive weight placed on my chest and I knew it was from not being compliant with treatments.  The junk that was down in my lungs wasn’t coming up either.  

I asked myself what good are you to your family if you are not feeling 100% and why would I bring my VEST and HTS if I didn’t plan on using it??? I started using the HTS with my VEST one morning and noticed a complete difference.  My lungs opened up and I coughed up this gross plug. That was probably down there for who knows how long.  I learned that I cannot miss a single treatment or I will pay for it.  But mind you I am one to never miss a treatment.  Compliant is my middle name I would say.  But I had to adjust to a major life change and incorporate my airway clearance into this new life. 

Once we got home I was still coughing.  I would get woken up at night by my cough.  I didn’t know if I was coming down with something from the hospital. Let me let a little frustration out…………So you would think that if you are a nurse in labor/delivery or maternity care that you would stay home if you were sick because you work with babies?!?!?  The answer to that question is NO.  I couldn’t believe it! It seemed like literally every nurse there had some sort of cough.  Luckily we only had one nurse that had a cough and she was only with us a short time.  I chalked my cough up to the hospital and blamed them for it.  I think though to be honest all the coughing I experienced was due to my lack of compliance on my airway clearance.

I called my CF doctor to get on some antibiotics just to be safe that I wouldn’t transfer anything to Alayna.  I even wore a face mask around her to insure she wouldn’t get any of my air droplets!!!  The doctor put me on a course of Bacterium.  I started taking the pills and within a few days I started feeling better. As I write this today, I hardly ever cough now.  To be honest I think it has to be a mix of being more compliant to my VEST and HTS and the Bacterium.

In other CF news, I returned my e flow machine back to IV Solutions because the company requested me to do so.  Apparently, I haven’t used any inhaled antibiotics in over 8 months!!!! Yippee!!  This is some great news and I again credit the biggest reason for me not needing any aerosolized antibiotics to my friend Mr. Salt!

I will be going to the CF clinic sometime this month to get my flu shot and have a PFT test done as well as the usual culture check.  I am hoping that my PFT is still at baseline or has slightly improved.  I promise to report back in a post soon.

I hope everyone had a great weekend!!!

Lastly, I have to post a picture of my beauty! This will be a theme throughout my posts in the future a picture of Alayna. I know I am obsessed but I am one proud Dad!