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!!



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. 

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.

 

 

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!!!

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.  

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!

 

Happy Halloween and a little update!

We celebrated Alayna's first Halloween over the weekend.  We unfortunately did not carve a single pumpkin this year but that is understanble because when you have a newborn all your attention is on the baby. Next year we plan to carve a pumpkin with her though! But over the weekend, we did have Alayna in a photo shoot at my sister in laws house.  She got dressed up as a lady bug and another really cute outfit that was adorable.  There will be many many more photo shoots to come as my sister in law loves photography and they only live two doors down from us.  So here are some of the pictures from the Halloween shoot.

 

Alayna and her cousin Kendal

 

Somebody is tired

 

 



 

Look at me in Orange!!

 

 

 

I am awake now and ready to eat!!!

 

 

 

 

In other news, Alayna seems to be doing really well.  She loves eating and making diapers for mommy and daddy to change.  She has developed a pretty bad diaper rash but since we took her to the dermatologist the suggestions they gave us seem to be working.  I never knew you could give a baby probiotics but it seems to be helping with her bowl movements :)  As for Maria, she is healing day by day.  I mean just imagine having a huge cut on your pelvic line and trying to feed the baby, sleep, etc. It's pretty hard but she has been a real trooper! More so than I would ever be that is for sure.  She did mention to me remember how you were John when you had your gall bladder removed and how painful it was for you etc. She said her surgery was 100 times worse.  I couldn't agree more!!  And again if men had to carry babies for 9 months and delivery there would be no more mankind!!

Oh in other news today was sad for me as my 2 weeks off work came to an end!! I returned to work today leaving my two beautiful girls at home :(  I think I told our labor story almost 10 tmes today which made me relive that horrible experience! But I always ended the story by saying they are both home and healthy which is most important!!

I know I cannot stop talking about our beautiful Alayna but I promise I will make a post about CF here in the near future.  I guess its good though that I do not have that much news on the CF front :)

I hope everyone enjoyed their Halloween!!!