pictures-7 months

We took Peyton’s ng tube out the other day to change it, so I decided to take some pictures of her tube free face!  She wasn’t in the best mood since it was her naptime, but I still think they came out pretty good!! 

 

you can tell by the ones at the end with her brother that she was completely over it!!

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our new normal-76 meds!

It’s been a little over a month now that Peyton has been home and let’s just say….it’s been a little challenging to say the least!!!

In order to stay on top of my mommy duties these days, I pretty much have to stay one step ahead every minute of the day…

I use to think Radek was a high maintenance child…Boy was I wrong!  His care is a soooo easy compared to Peyton!!

Peyton’s daily care consists of….

• 8 formula feeds (every 3 hours)
• 3 solid meals (baby food with added flax oil or coconut oil for extra fat)
• enzymes and applesauce before every feed totaling over 19 pill capsules a day
• 11 doses of liquid medication/vitamins
• Almost an hour a day of treatments-2 breathing treatments in the morning and 20 minutes of manual chest therapy (pounding on the different lobes of her lungs, 2 min each spot)1 breathing treatment at night along with 20 more minutes of manual chest therapy
• Usually about 4 outfit changes and mini baths thanks to her constantly spitting up and having diaper blow outs…remember her gut is a little sensitive!
• ALL the dishes needing to constantly be done for all medicine cups, syringes, formula measuring cups, spoons..etc
• ALL of her laundry…yes I said 4 outfits a day! That’s not including blankets, bibs and everything else that gets the wrath of her bodily fluids!
• Putting in her ng tube when she pulls it out, which she does about every 2 or 3 days..not fun!!!  Never did I ever imagine having to shove a tube into my daughters nose that goes to her stomach!

As for Radek’s list…It is MUCH easier, but it’s still no joke!

• Radek gets 30 enzymes a day-7 with meals and 3 with snacks
• 3-4 vitamins and 1 pill
• Treatments-4 breathing treatments in the morning along with his vest for 20 minutes and 3 breathing treatments at night and another 20 minute vest treatment

In the midst of running around like a crazy person this morning getting the meds dosed out for the day, I became curious as to how much medication I give out in one day..I found it to be pretty shocking!

• 49 enzyme capsules
• 5 vitamins
• 12 medications
• 10 breathing treatments (inhaled meds)

That’s a total of 76 for my 2 babies!!

It does seem like a lot, but it could be worse...They are both beautiful healthy babies in my eyes!!  I still feel very blessed and I hope my children grow up feeling the same way!

Most people have a simple medicine cabinet…In this house we have a medicine counter!

Home Sweet Home

Exactly one month ago today, after being there for 6 months and 6 days, Peyton was FINALLY discharged from the hospital!!

Although it’s been completely chaotic around here, we are beyond thrilled to have her home with us!  
To help out with the craziness and to give me the opportunity to spend extra time with Rad, we decided on getting a nurse to help out with her 3 days a week (the days that Shane works from 8am to 9pm).  If I didn’t have a nurse here I would pretty much be dispensing meds, doing treatments, hanging Peyton's every 3 hour feeds, or changing diapers all day long without being able to spend any sort of quality time with either of them. 
So thankfully with the nurse here I am having a much easier time and am enjoying my kids way more than I would be if she wasn’t here..PLUS she is awesome with Peyton AND it's great to have an adult here to talk to!!

It felt amazing being able  to unpack my bags for the first time in over 6 months.  To finally “move” back into my house!  To live with my family again…That constant feeling of anxiety is FINALLY gone! 
I will never ever forget those god awful feelings I had when Peyton was in the hospital.  The feelings of being home at night sitting on the couch with Shane watching tv while Rad was sleeping.  This was the time of day that I actually had a couple minutes to myself, which would make my mind go crazy thinking about how our newborn baby should be there with us and how empty I felt that she wasn't.  I remember wondering what she was doing, if she was crying,  how even if something did happen it would take me over an hour and a half to get to her, wondering if she felt abandoned, wondering if this was going to mess her up emotionally, wondering if she is going to remember laying there all alone.  I’ve spent many many nights talking myself out of anxiety attacks, trying to not let myself get worked up over it.  I will never forget, nor will I ever miss those helpless feelings.

I am sooo thankful and grateful that this chapter in our life is over.  I now have this peaceful feeling over me that I’ve never had before.  Even when times get crazy and overwhelming, which they do quite often, I remind myself that she's HOME with us, that I FINALLY get to take care of MY BABY!!

Rad has been such an amazing big brother.  He LOVES helping out with her!!

Month in Recap

I recently took a little bit of a blogging hiatus, mainly because life has been so emotionally draining lately that I barely have the strength to function, let alone write about it!!  Writing about my journey forces me to relive it and reliving the past month wasn’t something I was emotionally ready to do until now…

The week before Christmas we had a really big scare with Radek.  He was admitted to the hospital for his THIRD admission.  He caught RSV (Respiratory syncytial virus-a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies or those with high risk conditions) and it wreaked havoc in his little body, especially his lungs!  His O2 stats even got as low as 85% requiring him to need oxygen (something he never needed). 

Even though Radek was suffering from a virus, his doctor decided to go ahead and give him iv antibiotics for the simple fact that his lungs were so irritated and inflamed that he didn’t want to risk any unwanted bacteria making a home in them.  When Radek goes on iv antibiotics they insert a PICC line in his arm because it’s a more long term iv and he is able to go home with it so we can continue his meds there instead of him having to stay in the hospital.   When giving him a PICC line they take him to the OR and give him anesthesia.  Even though it’s a quick and easy procedure, it’s very uncomfortable and much easier to do if he is sedated.  Unfortunately, when they intubated him for the anesthesia, his already irritated lungs couldn’t handle it and had an extremely difficult time recovering! 
When I saw him in the recovery room it was heartbreaking..I have never seen him in such distress!!  I would compare it to trying to catch your breath after the hardest workout of your life!    Because of this they hooked him up to a CPap machine (similar to regular oxygen, but it puts air into your lungs with more force.)  He also had to spend the night in the ICU.  THANKFULLY while he was there he had a really easy going doctor that patiently put up with his unstable O2 stats.  His CF doctor told us that we got really lucky with the doctor that was on that night, he said if it was any one else they probably would’ve intubated him.  Meaning they would’ve given him drugs to paralyze him and put a tube down his throat to breathe for him.  NOW THAT is something I would not have been able to handle SO THANK GOD it didn’t happen and luckily by later the next day he was stable enough to go back to the cf floor.

I have to say…Other than the HUGE ICU scare, Radek being in the hospital was probably the most relaxed I have been in a VERY long time.  Even though I couldn’t see Peyton that week because I didn’t want to pass the RSV to her, it was such a comforting feeling being in the SAME city as BOTH of my kids.  There is something so unsettling about always being a hour and half away from one of your children on a daily basis.  It’s a feeling that even after 6 months still absolutely kills me.  It was just really nice to have some good quality one on one time with each other!!    

As far as Peyton goes….It’s still the same oh sooooo frustrating battle of trying to get her to gain weight!!

Thankfully she was able to have her broviac removed on Saturday January 7, which means NO MORE TPN!!!!  She is also FINALLLY up to full feeds!!  Now she needs to prove that she can consistently gain weight on her own!  I actually had my hopes that she would be home this week, but it doesn’t look like that’s going to be the case.  I hope it’s soon though because I am emotionally, physically, and mentally drained.  I honestly don’t know how much more I have left in me.   I want to look forward to her coming home, but at the same time I hate getting  my hopes up and then getting them crushed.  At this point I forget what it feels like to truly be happy and feel complete…this really NEEDS to be over….uuughghghghghghghghggh!!

P’s Big Move

Last week Peyton was moved out of the NICU and into a regular hospital room.  This for me was not something I was too excited about..

The NICU staff has gotten to know and love Peyton these past 5 months.  It took me a while, but I learned to trust them taking care of her and was even at the point although it took several months that I was able to leave her there without major anxiety and tears.  In the beginning I had many many nights at home laying in bed unable to sleep because I was filled with anxiety that Peyton was laying in her crib, crying her eyes out, and none of the nurses could get to her because they were too busy.
I know it’s a good thing that she doesn’t need the intensive care setting anymore, but in that setting the nurses are much more involved in her care.  Each nurse only has 2 babies, which they can see at all times from their desk, so P was constantly being attended to. 

She is now in a room all by herself with a nurse that has 3 other patients to take care of other than her.  It seriously KILLS me leaving her here….I am trying desperately to split my time evenly between  Peyton and Radek, but I can’t help but feel like I am completely abandoning her every time I leave her in this room alone.

I slept here with her the first 2 nights to make sure she adjusted ok.  The NICU is always bright and loud and this room is quiet and dark at night so I wasn’t sure how she would transition.  THANKFULLY it has been going great…As much as I hate having her here in this room alone when I’m at home with Radek, I absolutely LOVE it when I’m here with her. 
The very first night I slept here with her was by far one of the best feelings in the world.   Just sleeping in the chair next to her crib in complete privacy with no one around was amazing.  Listening to her breath as she was sleeping in the dark room with just her and me was something I never had the chance to experience with her.  I actually feel like she’s mine now.  When she was in the NICU I felt like I was just going there to hold her, almost as if I was borrowing her.  Now we can sit together and watch TV “since she has one now”..She’s even allowed to leave her room to go on walks! 

As far as the progress goes for her feeding issues, everything is still pretty much the same…She’s currently at 24ml’s with her goal being 29ml’s.  Every time they try and increase them, her body seems to get thrown off and she starts stooling out and not absorbing.  I had a talk with the doctor the other day and informed her that if they can’t get her up to her goal feed amount in the next month I’m going to take her home on TPN (her iv nutrition making up for the amount she’s not eating).  The reason I didn’t do this a long time ago is because the doctors insisted that they are confident that they can get P off of the TPN, not to mention it’s horrible for her liver.  Her going home on TPN is going to be A LOT of work for me.  Not only is she going to need to be hooked up to an IV pump, she will also have her ng tube in her nose so she will be hooked up to a feeding pump as well.  Life will definitely NOT be easy!

They also informed me that if she goes home on TPN it’s going to take twice as long to get her off of it then if they do it in the hospital.  At this point though, she’s going to be 5 months old tomorrow.  By me giving them one more month to figure this out will bring her to 6 months.  I CANNOT have her in the hospital any longer than that!  It’s not fair to her, it’s not fair to Radek, and it’s not fair to Shane and me.

I don’t want to sound negative, but I honestly don’t think anything major is going to happen in the next month.  I truly believe that I will be taking her home with her being at pretty much the same as she is now…not quite at her goal and still on TPN, but at least by me holding out another month I won’t second guess myself while I’m home trying to keep up with all her care.  I will know that I did EVERYTHING I could to try and make her as manageable as possible to come home.

P’s new room!

I hung pictures up on the top of her crib of Radek, Shane, and Me so she doesn’t feel so alone…I also hung flowers up that match her nursery theme at home so it feels at least a little bit like home!

 

This is the ballon Radek picked out for her in the gift shop the other day.  

  

The view from her room couldn’t be more perfect for her brother…A construction site with bulldozers and dump trucks AND even several train tracks behind it!!!

I am now able to take P to the cafeteria with me!!  This is her this morning hanging out while I ate breakfast…Oh how I LONGED to do things like this with her these past 5 months!!!