Tuesday, January 29, 2013

dealing with it

It's been a very emotional week for the heart community, high "highs" and deeply painful lows.  We victory together, and we feel the loss together...

  Something I made for Cecilia's scrapbook this week

Karl keeps reminding me I need to set up a trip to Boston to visit the hospital and meet the doctors since this is where we want her Fontan to take place.   I just can't help living in the moment and letting myself enjoy our lives.  Maybe I dont want a reminder that our daughter needs more surgery and that she is not "fixed".  Maybe just for one day...but if I was given a day, I would probably ask for a week, and a month and altogether I would finally ask for an alternate reality.  This is our life and the only option is to deal with it. 

Wednesday, January 23, 2013


Sunday I went to visit my ♥ Mama friend, Karen.  I met Karen the day her daughter Anya was prenatally diagnosed with HLHS at the hospital.  I'm sure that she was in shock and at the time it was her worst day ever.  I kept reaching out to her and dedicated to making a best friend out of her :)  We did become very close.  Anya passed away suddenly at home during the Interstage period, Nov 3 2012.  I went to Anya's viewing service in Nov, but I could not bring myself to go to the cemetery.  (Nor could I go to Demyni's burial, I just went to his viewing as well.) 

When I got to Karen's I just talked to her family for about 10 minutes.  Her Mom is so dear to my heart as well.    Then we drove to the cemetery because I was emotionally/mentally ready to visit Anya.  I brought her 2 roses.  One from Me + Cecilia, and one from Alexandra + Macsen.  I tried really hard not to cry, but I could not control it.  I think of my dear friend and her Angel everyday...multiple times a day actually.  Then we went to a restaurant and had dinner.  I was hoping to be able to spend more time with her, but Karl called and said Cecilia was inconsolable.  I want to be able to spend more time with my local ♥mom friends, so hopefully we can make plans again soon. 

Cecilia is in fact getting a lot better about her anxiety at home.  I think it is now narrowed to just occurring while I am not there.  That seems to be the only pattern I can see now anyway. 

Yesterday, our fantastic home nurse had a visit and she also thought that Cecilia looked much more happier and comfortable this week than she had last week.  I think she has finally adjusted to her previous diuretics wean, and I am happy about that!

We went to DC today and she had some "tests", or rather evaluations, on her neuro-development.  Cecilia is caught up on most of that, but her physical therapy is where she is behind.  I am not worried about this at all.  It is kind of expected, and of the normal findings in a baby with her condition who has had 2 open heart surgeries.  We resume therapy at home through the county starting next week.  Cecilia will continue going to this clinic in DC every 3-4 months, or until she is caught up!  She gets extremely upset if you put her on her tummy, or if she rolls onto it unintentionally.  I dont know for sure if it is pain or if it is fear, or both.  But in order for her to sit and crawl, she would need to build her strength of her neck, shoulders and her arms.  She will get there ♥ 

In 6 days Cecilia will be 7 months old!  I feel like this journey is moving on very quickly since we have been out of interstage!   That part went painfully slow! 

Saturday, January 19, 2013

Happy Weekend

We are having a lot of fun... taking turns gluing hearts, writing, and painting...something sweet for all of the people/groups that helped us.  Julia is sick with what Gina had and she wont take anything for her fever.  I hope she feels better tomorrow.  She slept most of the day.  Cecilia has been getting back to her happy, easy to please personality!  It makes me happy to see her smile more often each day after all the time she has been so sad. 

Thursday, January 17, 2013

Pictures + doctor updates

Not much to tell...we are just settling in home like we have been trying to do!

The first outpatient visit Cecilia had, they took her off Spiranolactone and changed Lasix to be twice a day instead of 3x.  Since then she is back to having intermediate tachypnea...same thing that stalled her discharge.  We went to see the Cardio yesterday and he said that he had planned to wean Lasix and Enalapril but because she was breathing so fast in clinic he decided against it.  We go back in 3 weeks and he will most likely make the adjustments at this visit.  He thought (as well as another Cardio while we were inpatient)  that she was overdosed on Enalapril since her function is normal and by echo it looks like her surgeries went good.  He was asking me questions because he didn't understand why her dose was so "high".  Well I don't know...I was not given a ton of info about Cecilia's heart before...  They mostly just said "its good" without talking about many specifics.  I was looking back in her records that I have, and in her CT report from August it said there was something found suspected to be vegetation on her Aortic Valve due to her positive blood cultures...   so I asked what did that mean?  And Her doctor said that is Endocarditis and would be very bad to happen in a person with her condition, and asked me to bring this document with me next check up.  His goals for Cecilia I think are that he would like to significantly lower her dose or maybe take her off of Enalapril and Lasix altogether.   I'm very nervous about that.  She seems like she has been working harder since the last wean and I don't like that. 

Next up, we will be busy with Home speech and physical therapy, GI check up, Neuro development, and our social worker is coming over for a visit too.  Since she did not have her 6 mo check up this week like I thought she would, I'm assuming that will be next week.  And the kids only have 1/2 days of school next week! Lucky Me!  :) hehe

The older girls are doing great.  Gina was sick, and it seems like Julia is starting to get it now.  Well here are some pictures from this week:

 We were trying to get pics of her with a paper for the SBH, these are a couple that didnt make the cut!








Sisters ♥

Saturday, January 12, 2013

RIP John

There was a woman that I met a day or so before Cecilia had her first open heart surgery.  She asked me about my Sisters By Heart tote bag, and we got to talking.  We often were entering/exiting the building at the same time over the next couple of months and we shed many tears together.

Her name is Donna and her husband was inpatient fighting Leukemia.  His name is John.

Many critical moments in Cecilia and Johns journey, we had shown up in each others path...strangers...but friends.

After all this time, we discussed where we were from.  It turns out we live in the same neighborhood, and her Granddaughter, Olivia, was in the same grade as my daughter Julia.

Each of Cecilia's hospitalizations, I have seen Donna.  And sometimes we run into each other at the school, picking up the children.  On Friday I saw her and the first thing we do anytime we see each other is first we briefly talk about Cecilia, and then we talk about John.  I could tell it was very bad news by her eyes.

John passed away New Years Eve.  The same day that Cecilia was discharged from the hospital.

Please send your prayers for Donna and her family.    I know he is not suffering anymore, and that might be the only thing comforting her...  because she lost the love of her life and her best friend.  That is a terrible pain in her heart and soul that I wish she was not having.