Thursday, September 27, 2012

M+C+G

Cecilia made us worried.  She has been a very happy girl at home.  But briefly she was very, very different.  She was so upset she was turning colors and wouldn't breath.  I just strongly felt something was wrong during this crazy behavior.  But then she suddenly stopped and acted as if nothing just happened.   Good thing we already had an appointment!  She seemed perfectly fine there.  She had low sats in the 60s for a while at first and 2 echos.  The first echo had discovered an obstruction in the aorta.  So then her Dr personally redid the echo and she said we are "this close" to a re-admission.  I have been checking her sats constantly at home.  If Cecilia has behavior where she does not seem like herself again, she wants us to go to the ER asap. 


Now just sharing some:  Me, Cecilia, and Gina pics










Monday, September 24, 2012

having some fun while rooting for our Ravens on Sunday...



                           no babies were tortured in the making of this photo  ;)












Sunday, September 23, 2012

handtizer

Before my child was diagnosed with a life threatening birth defect, I was not a Germaphobe.  I would even suggest it was a pet peeve of mine for people who were.  It annoyed me.  Then I was told that my daughters heart will never be "fixed".  That one day, she will need a transplant.  They can do 3 open heart surgeries to give her a chance to live this way.  And she will be closely monitored forever. 


The most common used word in our home these days, is "hand sanitizer", or if you are one of kids, you call it " handtizer".  I have been impressed with how well they are being about washing their hands.  This morning I was filled with so much pride as Anastasia asked for permission to rub Cecilia's head, and she followed her question with this statement " I already did handtizer on my hands".  Woah, how my life has changed so drastically.  I am proud that my children get it.  Then it hit me.  Of course they get it.  We are a family and are in this together.  She is not my baby, she is our baby.  Imagine being a 4 year old with a sister who was hospitalized for over 2 months.  Imagine meeting her and your sister is so sick that she can not breathe or eat on her own.  Imagine watching your mommy give her a lot of medicine including shots everyday.  As a passing stranger Cecilia would be normal to you.  You would not be able to tell she is sick.  If you are not living it, you may not get it.  I don't think I would be able to.  So, it's ok if you don't.  I will celebrate every day, week, month, and year.  It is a blessing.  And I have watched Cecilia fight as hard as she has had to so far, and I know that her fight is going to last her a lifetime.  So, even if you don't get it, thank you for trying.  Thank you for praying.






Because I don't know how I will go on without her in my life.   She is the best thing that ever happened to us.  She was meant to be.

Sunday, September 16, 2012

short update and pics

I have a permanent smile today, as my daughter Cecilia has finished ALL of her feeds orally today!  Oh and she has gained weight everyday at home as well!  She got to spend the day with some of our favorite Vinje's :  Grandma, Grandpa, Aunt Olesia, and big sister Madison.






Mommy told her she was perfect, and it made her happy ♥


Sophia, Anastasia, Gina, Maddie, and Jules



Madison and Cecilia




Grandma finally holding Cecilia for the first time ♥

(Olesia, you owe me a picture next time!)

It was a great day.  I hope she continues with accepting her bottle feeds.

Heart Friends

Thank You to my friends and mutual friends for wanting your child to be a part of our Heart Friends book ♥.  And I am honored and humbled that Sisters By Heart wanted to share our book with other families!  I'm waiting for baby Macsen to be born ♥ and of course there are a few special local friends to add, but this is what I have so far: 

Madison



Anya

Andrew

Zoe

Bodie

Aly

Evan

 Cemaia

Jon

Gabe

Jonas

Kate


Friday, September 14, 2012

HOME

Cecilia has been home since Monday afternoon!  There was a lot of things to be done to get her home. There is a company that delivered our supplies, taught me how to use our equipment, and also sends a home nurse once a week to check on our Princess.  First I met with a nurse who taught me how to use our g-tube pump.  The following day all of our equipment and supplies were delivered.  Karl and I went to the hospital Saturday afternoon and started watching a couple discharge videos.  We had to learn infant and child CPR, and then how to care for the g-tube.  He went home and I stayed with Cecilia for the remainder of her hospital stay.  I gave her the meds and did her feeds with the nurses there to help me with questions and tips, etc.  On Sunday afternoon a heart mom friend (Jen) who has been there for me for months came to visit.  It was so great to talk to her in person again.  She gave us her sons bouncy chair and swing, which was so kind of her since I do not own one anymore.  I cant wait for the day when Cecilia and Thaddeus will chase each other around ♥.   Cecilia passed her car seat test, and her hearing test.  On Monday morning I was given a heads up that Cecilia has lost weight the past 2 days, so Cardiology might not let her go home.  Luckily, they said that she can still come home, but if she was still losing by our Wednesday follow-up, that she would be going back to the PICU.  She got her last round of antibiotics after 10 AM.  They took her IV out, and I unplugged her from the monitors with pleasure.  We were all ready to go home.  Cardiology lent us a scale to use at home until her next surgery.  But we were still missing a pulse ox machine.  As soon as it was delivered, we were on our way.  One of my fears has been that Cecilia would die without knowing any life outside of the hospital.  It felt very surreal to stroll her out of that building.

Some pics of our weekend sleepover:






I am very happy how the kids are, well maybe besides Sophia.  She is jealous and acting up, but I'm sure it will pass.  Gina, Julia, and Anastasia are being great about the hand washing and sanitizer.  I don't even have to remind them to change their clothes when they come home from school, they get right to it!  The first 2 days home were definitely the easiest because Karl was here and could hold the baby while I got her meds ready, washed syringes, etc.  When it is time for her morning meds is also when AJ and Sophia want breakfast, and Karl is usually rushing to get ready for work.   I am so happy that she feels safe with us.  Everyday she gets: vitamin 1x, Aspirin 1x, Lovenox injection 2x, Enalapril 2x, Digoxin 2x, Lasix 3x, Safflower Oil (for calories) 2x, Prevacid 1x, and Spironolactone 2x.  She drinks her formula special made to be 27 calories.  Sometimes she passes out a quarter through her bottle, other times she wretches and if you push her she will vomit.  But more so lately she will drink most of her feed orally, and sometimes the whole feed!  We will be seeing her Cardiologist and the Cardiology NP every week at the hospital.  This visit Cecilia had an echo, but she will not need to every week.  She also had to get her blood drawn to measure her Lovenox level, and it was perfect so we will not need to do that again for another month!  Lovenox is a blood thinner we inject into her thighs 2x a day to hopefully break up a blood clot that is her Deep Vein Thrombosis of the left femoral artery.  All of her other medications are painless and are given through her g-tube.  I am really getting the hang of the shot, I have been able to give it to her without her waking up almost each time!  Thursday our home nurse came and she was great.  Sophia adored her!  We will not have the same nurse next week because the one we were supposed to have was sick.  The nurse just checked through my supplies to see if I need anything, and if I do she orders it, and then she does some vitals on Cecilia to make sure she is stable. 

Sunday, my step daughter Madison will be coming over to meet Cecilia for the first time!  ♥  We don't get to see Maddie that often, so I just know this will be a really great day.  Monday Cecilia will have her first check up with her Pediatrician.  Wednesday is always Cardiology day, and Thursday is home nursing.  This Thursday a social worker will also be coming over. 

Well, thank you everyone for your prayers for Cecilia.  In a few days, one of her heart friends from St. Louis is going in for the Glenn.  Sweet baby Kate and Cecilia had their Norwoods a day apart.  Kate's recovery has been such a hard one, but she is still fighting and looking damn cute doing it!  She has been on ECMO twice, multiple codes, seizures, and more.  My heart and mind will be with this family and praying for a great surgery so Kate will finally be less fragile and can go home with her loving family.  It will mean a lot to me if Cecilia's supporters pray for our friend.  ♥  Thank You

Now, here is some HOME pics...








Sophia is very proud of her new wall mural of marker scribbles.  Mommy, not so much.





One of these is formula, one is just water to flush the g-tube.  I notice if I give her a little bit of formula before the meds, she doesnt vomit them back up. 



Helpful go-to sheet ;)





Thank You Jen