Monday, November 26, 2012

Good cath (mobile re-upload originally posted November 2012)

No issues after the cath.  She is back to her wiggly self!  The findings were reoccurring aortic arch obstruction, reoccurring narrowing in her sano shunt, and a narrowing pulmonary artery.  They Ballooned the problem areas and her PAs are still a bit hypoplastic, but the pressures are much better ...and that is the best news and means she is ideal to move forward with the Glenn. 



Saturday, November 17, 2012

I wish I was fearless

It feels there is so many bad/sad things swirling around me this month. Fear is invisible, but it is present.   

If it is an invisible cyclone, I would be holding onto Cecilia, walking through it, and so scared that she will be snatched out of my arms at any moment by this invisible force of nature.   Then, briefly, part of me wants to just let it take me.   My arms are tired and they hurt.  My soul hurts.  My heart hurts.   This fear is consuming me.  And the more I love her, the more those places hurt.  But I keep walking and I grip tighter and I will keep convincing myself that we will not be consumed.  We will not give up, and all of my fears will stay down to the very bottom of the invisible jar that they are locked inside of.  

I cried so much yesterday.   Out of no where...Cecilia would laugh and the first thing I think of are my friends who will not hear their babies laugh and it just makes me so sad!  I am a failure at coping.   I realize this.   I made myself make a list of all of the good things that happened this week, so I can not let these sad feelings I feel tune out the ones that should be making me so happy.

- Cecilia's Home Care Nurse brought me Starbucks  (yes this does deserve to be on my list, LOL.  I am so tried and exhausted, that coffee was the biggest pleasure of my day!  I take care of 5 children and my mornings are so busy that I can not even make myself any)

- Cecilia's Birthday ♥ Brother, Maverick, was officially listed status 1A for a Heart Transplant!   That means he is high priority on the list and just that he is finally on the list is something to celebrate (the process to be listed is not instant unfortunately)

- Cecilia is scored exceptionally high for her social skills, which makes Karl and I happy because one thing we were told by doctors during the pregnancy was that she might have delays, specifically that her brain could suffer neurological delays and damage.  (She does have physical delays but she will get therapy for that and catch up to her age group eventually!)

- Some Heart Mamas and I are exchanging "Secret Santa".  I could not be any more excited over the little warrior that we are assigned to get a gift for!   I wish I could say more, but it is a secret  ♥

- Even though Karl and I have been having a hard time to see eye to eye about Cecilia's care, we are at least on a compromise stance now.  I have been fighting with him about this for a long time, and I feel like we don't have to fight anymore.   We should be a team.  Not being a team has been killing us

- Tomorrow Cecilia is having a photo session with Snapdragon Photography ,and the Mama behind the camera is another Heart Mom.   Her daughter Lily is recently post Fontan (stage 3), and she also had a g-tube when she was Cecilia's age, so she has tons of experience with a baby just like Cecilia!   I can't think of anyone better to take her photo, and I am so excited to meet Lily!  ♥

-  I think it is safe to say another blessing of every week is our interstage NP.  She is beyond helpful and one thing I believe is there would not be another like her in any other hospital.   




It was really hard for me to make Demyni's heart.   I changed it several times.   It kept coming out too feminine, he doesn't deserve no sissy girly heart!   He has not been doing well for his entire journey, and I prayed so much for this little guy.  This baby is stronger than a hundred adults put together...






Cecilia doesn't like it when I use the flash!  




Tuesday, November 13, 2012

Fly High Demyni

Demyni is another baby local that has HLHS, just like Cecilia.   None of these cases are said to be the same.   Some journeys can be similar, and have a lot of ups and downs, but that is why it is so hard to care for them- because their anatomy is so complex even the best doctors in the world say it is a challenge.  Karen, Keisha, and I all met when we were pregnant, but Cecilia is the oldest.  They were next door, and across the hall from each other and never did they meet.  But we had big plans for them!  These babies are supposed to grow up together and be friends.  That was my plan and it did not happen because they are both in Heaven now.  

I know I am not strong enough to be an Angel ♥ Mom.   I know it!  I will blame myself.  I did not do enough...   But it might happen.    Yes, Demyni and Anya will play with her in her dreams ♥, but she might like the other side more than she likes it here.   What if she doesnt come back...and I will have to be OK with that if it happens.   Karl is on his way home with 266 pages of records for us to send to the 2 best Childrens Hospitals in the country.  Because I have to know that I did everything that I can do for Cecilia.  It is not up to me if she is going to make it.  If it was up to the mother, surely Anya and Demyni would be here!  Because those mothers are broken.  :(  

I dont know where Cecilia is going to get her next surgery.  But I cant sign a consent without knowing the best doctors to treat her condition in the country took a look at her heart and then I will go from there.   That is ALL that I know.  

Sunday, November 11, 2012

Gina's 7th birthday (and Cecilia updates)



Cecilia was not in the mood for Cardiology this week.   She cried for a really long time especially during tests.  But she still looked beautiful <3



They increased her formula, and that was about it.



Some of her stitches never dissolved, and one in particular has been fighting its way out.   I woke up to her scar looking disgusting, and so I worried a little bit about it.


Not the best quality pics

 


Her NP called in some antibiotics just to be safe, and shortly after this had nasty ooze coming out.   So, I laid her down to clean it, and then she started choking on vomit.  She had not been projectile vomiting so much anymore, so this all happening at once had me upset.   After I put her in the bath, it looked much better!   The redness was fading, and it had seemed to be drained all the way.  I put a band-aid over it just in case more was going to come out, and we went and got her antibiotics.  





The big kids were at their Oma's, and so Cecilia and I had a very quiet day together, and it was nice.  She did not throw up anymore either.  



Gina Raye has been growing up!   On Friday, Nov 9, she turned 7 years old, and today we had some family over to celebrate her birthday. It was great to have all 3 of her Grandma's over, Grandpa Dan, Aunt Olesia, Aunt Emily, Aunt Jessica (and her bestie Miranda), Aunt Aubrey (and Aubrey's boyfriend Mike), Uncle Rob, Big Sister Madison, and 3 of our neighbors (Gina's friends).  She was a really happy girl and I am so glad her birthday turned out great.  It was so good to see them all, especially my sister Aubrey.  I hardly ever see her ♥


(mesmerized by Ke$ha)


Cecilia and my mom














Cecilia and Grandma Vinje



Cecilia and Aunt Olesia


Cecilia and Aunt Aubrey


Cecilia and Uncle Rob


Watching The Ravens whoop some Raiders ass!




I love Gina and I am so proud of her.   She really cares about other people.  She always offers to help others, and she is my sunshine.   She is doing exceptionally well with math!   I never have to help her with her math homework, and when I offer to, she asks me to let her try on her own first :).  She is not the best at reading, but we are working on it, and her spelling is also improving a lot!  She received a diary for her birthday and has already been jotting down "secrets"  :).  

Tuesday, November 6, 2012

I hate HLHS

I usually share my feelings without hesitation.  I don't hold back often and I'm not afraid to show my soul to my friends and to even strangers...Stripped and bare, this is my soul, love me or hate me...but this time... I just can't.  I'll share what I can because in my fashion, it helps me to release something, but it wont be much...  this is so close to home, and as much as you can genuinely try I don't think you can understand.

My friend Brandi  recently celebrated her daughter's Glenn-iversary.  She beautifully explained to her family and friends how this day was a big deal for her to celebrate, because the surgery is the reason Madison is still with us.

Sweet baby Kate is going home today for the first time in her 4+ months of life...after multiple surgeries and procedures, codes, and rounds of ECMO, she is well enough to see outside for the first time.  Her Mother will always be fond of this day, I am sure she will never forget it.    

My friend Keisha recently celebrated her sons 2 month birthday.  Sometimes we celebrate by the week, sometimes by the day, sometimes by the hour.  Her son has not ever been "out of the woods", so in her case especially...   

The day you never want to have...you plead and bargain for it to never happen to your sweet heart baby...an Angel-versary...November 3rd will be the day that Anya became an Angel and I am sure it will be known as the worst day of her Mother, my dear friend Karen's,  life.  She will try so hard to forget this day...

I've told myself a thousand times, going back to when we all 3 were just pregnant still, that "This time, next year, Cecilia, Demyni, and Anya will be playing together and we will look back on this time with relief that we made it through"...

Tomorrow we will walk through a cemetery, and walk past tiny little graves to say good bye to Anya... and my heart will ache for every parent out there who visits one regularly, but especially it will ache for my friend, Karen.   It will ache for Cecilia, that the friend she never knew she had, and she will now never meet...but I can only promise that she will know her.   We wont ever forget you baby girl.   Forever, I will still think about Anya and I will still love her special heart.



I thank my family and friends for praying for our friends on Saturday.   I wish I could say that Anya was still with us like our buddy in critical condition, Maverick,  is...   Like Cecilia is...  :(



Thursday, November 1, 2012

Halloween, etc...

Our Monday was indeed a day of canceled appointments.   The storm did not seem so bad in my area...at least we never lost any power and my yard was in tact.  I feel really sad for all of those that can not say the same.

Monday Morning:

Tuesday Morning:


the wind just made more leaves to clean up, but that was going to happen sooner or later anyways!  Our roof is leaking, but YAY for insurance...

Our Halloween Costumes were supposed to be delivered Monday, but they did not arrive until today (Thursday).   The kids could have cared less and since we have an abundance of dress up stuff, it was simple fix to recycle old costumes.

Sophia Capri, aka "Bat"




Gina Raye aka "Pretty Girl"  (her self-given title lol)


she decided to add AJ's broken wings from last year

Julia Rose aka "Cinderella"



Anastasia Jade aka "Mulan"

I'm not the best at make-up lol






Stay Tuned for next year, I can guarantee you that they will be--- Little Red Riding Hood; Cat; Queen of Hearts;  Goth Princess . 


For the past 3 months, Cecilia has had to have 2 Lovenox injections to treat Deep Vein Thrombosis~  well- NOT ANYMORE!!!  :)   I am happy for 3 reasons-  1) Her legs are so bruised from these shots... 2) I don't enjoy making her cry twice a day... 3)  Lovenox is really expensive!!  I am so happy about this!!



Cecilia's visit at Cardiology went good and her appointment with her Ped today went good as well.   He did ask me if "they" (cardiology) are Ok with her weight, which I think that they are...she is 4 months old and 11 lbs, 2 oz.  I always just look at her being on the growth chart at all as a blessing, because I know heart babies really struggle with it.  He then asked if Cecilia can tolerate 30 cal formula, which she has never been on ever so I don't know...and he told me no baby food for now, because she is burning too many calories (even though she is 2/3 tube fed).  What makes me worry is, will Cecilia ever be allowed to eat 100% by mouth?   I realized today that this food situation can potentially be a bummer to my attitude and since she is not even close to failure to thrive (She looks super healthy doesn't she ♥) I am just going to choose to not worry about calories....   She looks great to me, that's all that matters in this moment,  and I have enough on my mind to process...

For starters, her next open heart surgery.  More on that when I know more...   I am pleased that it definitely will not be scheduled until the week after Thanksgiving!   Even though I hate cooking, (and my in laws who make the best Thanksgiving will be in New York) it will still be awesome to have another holiday with all 7 of us together ♥  I am also really confident she will be home long before Christmas!  I am so ready to get past this stage.  But of course I am scared.  So thanks if you are praying for my little baby.  ♥  I will not go into how I feel about her upcoming surgery today, because this update is pretty upbeat, and it feels like I have not had one like that in a long time.