Saturday, November 2, 2013

suspended

Dear family and friends that are wondering what's going on since the last bomb I dropped about Cecilia's MRI results and outcome prediction consult:

So, to be honest,  I'm having some difficulty coping with what I know now.  I'm so thankful to know it all because like I said, "Since Cecilia's diagnosis we have always had the mindset that we want to be one step ahead of HLHS and tackle it proactively. For the first time in her life, we feel like we now are. And we have them to thank for it.".   I want  you to know how happy I am to know these things, but at the same time I feel so complicated inside.  I'm not even sure I understand what I'm feeling and going through.  I'm not really depressed, at least not any kind of depressed I have ever experienced.  I just feel lost.  I feel like our lives are suspended in time until Cecilia's Doctors get the results from Mayo Clinic.  I hold my breath when I check the mail, because I know when I receive my copies there is a good chance that her Doctors are receiving them too.  I do continue on with our daily routines as if nothings changed except in my mind I know SO MUCH has changed.  gulp. It's all I want to talk about except at the same time I don't want to talk about it at all.  Not until I have the results in front of me again and I can process it over and over until I really understand what it is I'm even talking about.  Because that's just the thing, I feel like I am still processing it all, like it has not really sunk in yet.  However, I'm hoping this will make me feel better, by trying to explain what I'm going through.

Everything is at a stand still.  We are standing still.  Except so much is moving around me (my thoughts and my questions).  Like standing in the sand while the waves move you, or at least give the illusion that you are moving...drifting. I don't know where we are "moving".  All I know is that Cecilia needs an unplanned surgery to fix a bunch of problems I sort of knew about, except I was told they were not problems anymore, and to trust that they would not concern her future.  In a lot of ways I also feel validated in my instincts, which is a good thing sort of.  I'd rather be wrong if it meant my baby was doing well, but it gives me the confidence to voice my concerns more aggressively instead of passively.  And then I constantly wonder so many things about the future, after Cecilia's doctors do receive the reports and after I have spoken to them about it all.  Will I need more surgical opinions?  Should I request them anyway? And who/ what centers am I interested in if I'm not confident in the opinion/plan we receive back?  What are we going to do if that happens? That's mostly all I think about right now, because that's the first crossroad to get to. I'm hoping we keep walking forward, but there is a chance I won't feel safe with whatever plan they want for my baby.  Changing our path is something I can do because we've done it before.  I know it could happen, and just in case I want to have a back up plan---at the least an idea of one.  It would be so easy if they gave us the same feedback Mayo did and that would stop all of my thinking and wondering.  The next crossroads would be a cath.  Where should she have her cath done?  Should it be where she is to have surgery, so that the interventions in the cath fit with her surgeons plans?  All of these questions I go over everyday...but I'm standing still...drifting from question to question.  

One thing I didn't say on Facebook is that he did say her heart function appearing good could be deceptive based off of how severe her Tricuspid Valve is leaking.  He showed us a movie of her heart squeezing, and showed us all of the blood swishing around backwards, and I think what he was explaining was that the leaking valve somehow makes her heart squeeze easier.  I've been waiting for the report in the mail, and hesitating to bring that up because I cant remember how he worded it.  I try really hard to remember the way he explained things, because he did a wonderful job at it.  Way better then me.  There is so many other things that tell us Cecilia's heart isn't doing well and it doesn't make sense to me.  Some of it does, but how it all comes together I feel lost.   Her heart is significantly more enlarged than it should be on your average single ventricle.  Her BNP is in the 700's, which is one of the strongest indicators to us that her heart is not doing well.  He could also tell by feeling her liver, that her heart isn't what we'd like it to be.  I think that was one of his strongest points to us, in explaining why he recommends this surgery as a 4th stage in reconstruction be done before the Fontan, and give her time to recover, and her other organs to benefit from the repairs.  Because when you switch to full Fontan circulation, your other organs can take a hit, specifically the liver.  I do feel like what he was indicating is that what's going on with her now--that this can be  reversible.  And that's why I feel so happy we know now before the only option is a transplant.  But it's so conflicting inside.  I don't want to feel happy to know my baby needs another huge surgery.  I haven't truly even accepted the need for the 3rd open heart , and now there's more...  And it's not that I'm even happy about it at all.  I'm rather upset about that itself, and maybe even angry.  I guess that's why I feel lost.  So many emotions that contradict each other....  He recommends that her Lasix be increased to at least twice daily again.  He also said she would benefit from Aldactone and Digoxin, both of which she used to be on in the past.   She's already on maxed dosage for her heart function medication (Enalapril)...  Knowing her doctor wanted to take her off of it, I'm so glad he hasn't gotten around to it yet. 

I don't think much about the discovery of Sophia's heart defect just yet.  He said no rush in getting her to a Cardiologist because her valve is working like a normal one, and we would only need to check on it once a year.  He drew us a picture of her Bicuspid Aortic Valve: 

 
 
I guess like with HLHS, there are different variations of BAV.  The one that Sophia has is a RN fusion. I have not researched her defect since she was diagnosed, but I have looked it up out of curiosity in the past, so I am minimally familiar with BAV.   I know there are many people living normal lives that have no clue they were born with it, and never even need surgery.  I feel very hopeful that will be the same outcome my Sophia will have.  I did ask the Cardiologist if she won the CHD lottery-- what I meant was if he were to have a heart defect, would this one be the one he would hope he got stuck with?  His answer was "NO, it isn't " because of the potential problems.  And I wont say which defect he told me he would consider the lottery because of the risk to offending someone who may disagree.  "The worst defect is the one your child has"
 
 

Cecilia at our hotel room in Minnesota
 
 
 one of the Hospital's waiting area
 
about to walk across the street to the Hospital. I think she's officially outgrown this infant carseat/stroller :)
 
 

 
As soon as I hear about what her Surgeon wants to do with her mod-severe leaking Tricuspid Valve, narrowing LPA that is hypoplastic (he also said he did not think it has actually grown since she was born) and her Aorta (which he suspected is not growing with the rest of her heart like the LPA--but I forgot to mention that part earlier), I will definitely let you know.  I gave the Surgeon a heads up and he is on the look out for the discs.  I hope to hear from her home Cardiologist as well and I will also keep you updated on that. 
 
♥ Please send us some good vibes ♥
 



Thursday, October 31, 2013

"How To" tips from Cecilia

This is how I eat my morning Pediasure:

First, I slide all the way down the hallway on my back.  
Then I roll over side to side, back and forth.
Then I scoot on my butt.
Stop when you get to the doorframe.
I bang my bottle there.  tap, tap, tap, 3 times!
Then I crawl all the way back into my room.
And that's how you get it done!

Monday, September 30, 2013

Learning Session Part 2

 I loved being there.  I loved having an opportunity to hear the passion, enthusiasm, and hope in these practitioners voices.  I loved being able to engage with Cardiologists around the country and get down and personal to share what its like being the parent of a very complex child.  I loved seeing the chemistry between Parents and Practitioners working as partners in this.  It's exciting!  I loved catching up with Cecilia's former Cardio too.  I didn't really realize how much I missed her or talking to her until I saw her.  I liked hearing the teams talk all things Interstage.  What works for them to what doesn't.  I especially loved the candid conversations.  I can be open and real when it comes to my baby and our journey, and it was just cool to have strangers do that with me too.  They have this one part called a "Break out Session"  where teams can pick where they want to go, based on the topic.  In one of the rooms, the parents sat on a sort of panel and the Cardio's/ Nurses were welcomed to ask us basically whatever they wanted.  I appreciated the question, "How does this experience effect your marriage and what kind of toll does it take on the siblings?"  or something along those lines.  That question actually meant a lot to some of us parents.  We are usually not asked about that, but it meant a lot that they are curious enough to care about that aspect of our lives.  It evoked an emotional response, and as the questions kept pouring in I changed the name of the session, "the Breakdown Session" lol.   I don't care if I cried in there.  I was thankfully not the only one.  Love my heart Moms!

When you first get to the Learning Session, you find a ton of tables and your seating arrangement.  They like to put the parents with their center.  I knew this beforehand, and I was struggling with where would I sit (not sure where I belonged) so I requested it to be random.  I sat with INOVA Fairfax Hospital for Children (Virginia), and Children's Mercy Hospital and Clinics (Kansas City).   I felt like I was at the cool table!  I just felt really lucky... haha if you leave out the part that the speakers didn't work where I was sitting and I could hardly hear anyone speaking the entire time ♥.  But, I was sitting next to someone presenting a new technology of Interstage home monitoring.  She let me play with it on Friday and I reviewed it, basically just gave my opinion.  What the peeps at Mercy are doing is giving their families a little computer tablet to record their data, rather than a binder.  It also can take your babies Saturation!  This was such a cool tool.  It did all of the math for you.  If your baby did not gain the right amount of weight today, it actually reminds the parent --like, Hey! this is a red flag.  Same thing for the pulse ox.  They also have a video recorder on it.  They ask their families to record breathing for a short time each day to establish a visual baseline.   The best part about this is that all of the information you put in gets sent to the Doctor today.  For me, that just seemed comforting on top of its innovative awesomeness.  I'm a constant worrier, at least I was during Interstage.  I think I would have felt a lot safer knowing her Doctor could look up what Cecilia was sating, etc. anytime she wanted to.  Most importantly, both of these teams made me feel welcomed.  They truly "engaged" me and I wont be surprised if I see them with their own Parent Rep next time. 

So, onto Parent Engagement.  One Center, CMC Dallas, presented first.  I thanked them on behalf of all of us parents.  CMC Dallas have an Interstage focused Family Advisory Council.  They invite  their currently enrolled Interstage families in for meetings for both support and working together as advisors to improve the quality of their center's care.  How awesome is that?!  For real!  I imagine their families feel valued.

After their presentation, Diane and I took the Microphone.   I was so nervous.  It also didn't help to know that there was 160 people there looking at me!  I just kept thinking over and over, I better not puke, I better not faint!  Though I did not read from a script, I had wrote everything I wanted to say down just in case my mind went blank up there.  So that's the only way I can give you an idea of what I said.  I started out by saying I didn't really understand the practice of Medicine, because I'm just a stay at home mom to 5 little girls...maybe I don't know a lot compared to them, but one thing I felt strong about was parent engagement could improve outcomes.  At least I believed it made a difference in our journey.  When Cecilia was finally discharged post Norwood, I was terrified, isolated, overwhelmed, stressed, and I just felt alone.  The reality was that  I wasn't confident that I could pull Interstage off.  I mean, I could barely survive a morning in my household with all of my responsibilities.  I woke up everyday wondering, is my baby going to die today?  I worried constantly so how would I know when to call?  What if I miss something?  Our Interstage NP, Caroline gave me her cell # before discharge and said to call or text anytime if I wasn't sure.  But I was probably never going to call or text her.  I just didn't want to burden her.  A few days home, she texted me something simple, just to let me know she was thinking about us.  She engaged me and that broke this barrier I had of fear.  Fear to bother her.  Eventually I was so comfortable to text her that I would even ask questions that were probably silly.  But she never made me feel bad about it.  That was a key point and I hope that people "got it".  It didn't matter how many stupid questions I had, as long as I felt better, she was happy to answer them and she was always there.  Then when the time came, that calling in a concern mattered most (in my speech I called it serious business) I just didn't hesitate to call.   I wished Caroline was there to hear what I said.  Then Diane went through identifying possible barriers to engagement between parents and practitioners.  Being sleep deprived, fear, anxiety, anger, lack of knowledge are just examples but she was able to apply them in her own personal story.  Then it got really fun because we opened up the topic to the Audience.  All of the parents and practitioners were able to weigh in and offer their own insights, suggestions, conflicts and experiences. 

One presentation I know a lot of you will be happy about was called "Community Cardiologists as Partners".  I hear stories from frustrated parents about communication conflicts between their surgical center and local center all the time.  I'm glad it was a topic.  At Omaha, they keep the patients local doctors in the loop during the inpatient stay and they just include them as part of the team. 

All of the workgroups were able to present and keep the rest of the Collaborative up to date.  There's a Feeding group, Readmissions work group, and Mortality.  I remember taking a pic of a graph during one of the work group presentations, but it didn't come out great.  They had surveyed the teams on whether or not they allow patients to go home with an NG feeding tube, or whether their policies utilize a G-tube more.  Where Cecilia was, you could not do the NG discharge.  I know for some parents what type of feeding tube they prefer is important to them, so I would like to understand more behind this and the decision on policies.  It was close to half said no to NG yet close to half said yes.  I have no regrets with the G-tube though  I did think it was interesting.  For the mortality group they brought up the "cause of death".  It didn't really answer many questions and the truth is after all of this passionate work and commitment to identifying answers they really cant "move the needle",   and the mortality of patients discharged in between stage 1 and stage 2 has pretty much stayed the same.  Keep in mind, they only enroll patients into the Collaborative database that are discharged home.   They proposed possibly we need to go back.  Back to birth.   As a parent, it makes me wonder what is the real mortality here?  It's my first thought.  They don't have all of the patients that have died post Norwood, some I know of even pre-Norwood.  And some patients, while making it to stage 2, still never discharged until well after- which leaves them out of the data too.  They suggested important key factors to possibly learn from and look into is pre-operative management, surgical technique, and post operative management.  Doing this would then also include the patients that passed away without ever making it home.   Doing this might answer a lot of questions about what is the best way to care for this group of patients. 

The other hot topic, and honestly the one I am most desperate for, is Data Transparency.  There's a great story that I encourage you to read if you can (link here), called "Annals of Medicine:  The Bell Curve".  What happens when patients find out how good their doctors really are?   The collaborative network for Cystic Fibrosis (much like this network for HLHS) decided they needed transparency to drive improvement.  At Cincinnati Children's, the CF team there found out they were just average.  The first honorable thing they did was have an honest look at their program, accept that they weren't the best, and have a desire to improve and work for it.  The second honorable thing they did next, was they told their patients and families the truth.  The parents decided to stay even knowing their child might live a lot longer if they get care somewhere else...and they worked together as partners, or as a team.  The parents trusted their doctors, respected the honesty, and wanted to have a role in making their team at Cincinnati better.  It took some fighting on their part, but eventually Cincinnati learned who were the actual best centers.  They visited them and learned from them.   We had a speaker actually retelling the story herself at the learning session.  I wish I could retell it to you just as she had, because it was very moving and inspiring. 

Wouldn't it be amazing if 2 or more teams stood up and volunteered to explore the idea that transparency drives improvement?  What if one center below average, average, and "best" all worked together more closely, visiting each other's site and offering advice and insight?  What if transparency saves lives?   What if transparency is enough incentive to change?  In a lot of ways, it isn't fair that care is better at other places.  It isn't fair to the children and families who cant change their center because of Medicaid. 

The audience were to discuss their thoughts, concerns, and ideas behind Transparency.  How do they feel about telling one another within this network their outcomes, to telling their patients where they are, to then the idea of telling the public?    I felt disheartened by a comment a couple times but for the most part I was really enlightened to see most of these centers are at least open to the idea and not initially defensive and against it.   I knew that Tabitha, Waylon's mom, was in the room.  After someone brought up her CNN article negatively, she bravely stood up and said you're talking about me.  # Badass!  Unfortunately, I couldn't really hear her talking because again the speakers near me were not working :(  But... because I have spoken to her countless times about this topic, I am sure what she said came from her heart.  When parents like us advocating for transparency all we hope for is understanding that this is our children's lives.  A hope for teams to  stop pretending the quality in care is equal everywhere, and instead work together to make it true. 




Learning Session Part. 1

I know all of my heart Mom friends are just waiting for one of us parents to give you a recap.  I am sitting here wondering how can I actually put into words how much I loved being there...  How can I recap it?  Will what I say even justify how impactful it was to me?  It's kind of hard to process everything that happened.  I just want to say it was the best experience. 

So, I am going to try to separate both aspects into 2 parts, and hopefully do both of those for you today.  First, on a social level, finally meeting parents who I have had these strong friendships and deep connections with, to the opportunity of making new ones.  The second part blog will go into detail of the Learning Session topics itself.

PLEASE contact your teams and get involved.  No team invited me along with them.  You may even reach out to your child's Cardiologist and still not be invited to come with them (Hey, that happened to me lol).  If your heart is set on having this experience, don't give up.  The Midwest Heart Connection  held a scholarship and that's how I was able to get there.  You also can contact Kay Fricke, who is the Parent Engagement Coordinator, aka the most helpful person who solely focuses on us parents.  I hesitated to really commit to this because I am not a professional anything (high school drop out, stay at home mom).  I feel super uneducated in comparison to other parents who come.  But what I realized is that's the perfect recipe.  To be honest they want more diversity among the parents. So please don't feel like you wont fit in, or have anything to offer.  You are a parent to an HLHS child, so you fit in.  Period.  ♥

First I will talk about meeting the other parents in the Family Advisory Committee.  We have been having frequent conference calls with each other and countless emails.  These parents are Nikki, Stacey, Julie, Diane, Travis, Trent and myself.  We come from all different parts of the country and different backgrounds and journeys.  For me, meeting them all in person was a blast!!! We just work so well together and it actually does feel like we've been friends for much longer than what we have been. 

We come to this Learning Session, Centers all in the Collaborative-  Nurses, Doctors, and Parents, ect... uniting from all different parts of the country for one thing.   To improve the survival of Interstage in HLHS.  When you put it that way we're there for the heart angels.  For Anya, for Demyni. 

 
 
 
For Lily Grace and for Ethan.  For Brooklyn and Alyssa.  For every baby that passed away before the Glenn. 
 
For Corinne.
 
"I just want them to know that I gave my all, did my best, brought someone some happiness, left this world a little better just because-  I was here"  - Beyoncé
 
 
Friday night, the attending parents went out for dinner and drinks.  I finally got to meet Sarah, who I "met" in an online support group actually before Cecilia was even born.  Sarah is the mother to Corinne Rose.  I make these 2 scrapbooks for Cecilia.  Heart Friends  I started while she was Interstage to help me cope when my husband had to return to work--- and I wasn't able to be at Cecilia's bedside very often because we had no one else to care for our other 4 children.  It hurt me so bad to know she was in there alone.  So I made these pages, stories of her heart friends from around the world, so she had something to look at in her life to remember she isn't alone.  A lot of the parents to the children in this book were there ♥....but I couldn't forget the Angels.  I wanted to do something for these parents, to know I think of them often and that their baby will not be forgotten!  So I made a book for them too. You can see all of the hearts for Angels here.  Meeting Sarah was one of the best moments for me.  She wanted me to know what I did---just how much it meant to her ♥ 
 
 
 
Sarah and I at dinner.
 
 
The dinner was so much fun...laughing about things that no one else will get unless you have been through this process....sharing our stories and it doesn't matter how many families I meet, each of them amaze me.  I got to make new friends too.  I got to meet adult HLHSer, Meghan!   She is like my hero.  Never letting HLHS stop her from living her life to the fullest. 
 
I got to hang out with a lot of the Sisters By Heart.  These are special Moms who were there for me in support groups all the time, in every chapter of Cecilia's journey!  hanging out with them =  epic   ♥ 
 
 
Last but not least, my roommate Jennie, mom to Tyler.   It wasn't hard for us to get along, we're both outgoing and fun.  While we didn't know each other that much before signing up to be roommates, I'm so glad that we did!  We were both exhausted on Saturday, yet decided to take a walk in the city before dinner.  That was a lot of fun and cool just to be out and about in downtown Cincinnati exploring... but I just think the conversation we are able to have made everything more awesome.    



Friday, August 16, 2013

Sophisticated Data

I have been following a story of one of our heart friends, Waylon, in Kentucky.  He is a little younger than Cecilia.  I remember hearing about the program he was in suddenly shutting down and withholding information from the families.  It sent a big "WTF" through our support group. It was incredibly shady how everything played out and I sympathized with those families. Can you imagine being oblivious that the program you trust your sons life with has shut down some time ago, and then being told secretly about this because your son is actually in heart failure and you need to transfer him in order to save his life....  What were they going to do?  Let him stay there and die knowing they couldn't treat him and provide the care he needs?  You can read the CNN article here .    In the video on that article page, the hospitals Administrator claimed parents are not sophisticated enough to understand data (when asked about their mortality rate). 

I, along with the majority of other Heart parents, were deeply insulted by that comment.  The highest level of education I have is a GED, and I am "sophisticated" enough to understand a STAT or a RACHS score.  RACHS=  Risk Adjustment for Congenital Heart Surgery.    I understand that the first operation my child needed is the most riskiest and complex congenital heart reconstruction that holds the highest mortality rate.  If your patients and their family don't understand that, then you have failed at your job in explaining the Norwood Procedure.  You have not been transparent.  A look into where each congenital heart surgery falls on the risk factor list (rated 1 to 6, and 1 represents the least risk), click here

Parents and the public have a right to compare surgical volume and mortality rates.  It's our right to choose what team we want for our child based on facts.  I appreciate knowing that the experience and surgical volume of our original chosen center was incredibly far from ideal.  I still chose to believe in that team at the time, and it was not an easy decision.  I cant imagine not knowing the truth.  It infuriates me that other families were not given the same truth and transparency.  We have changed our Insurance policy twice now for our daughter Cecilia, to be able to see specific Doctors of our choosing.  I strongly feel her quality of life depends on it.  It's our choice, and all families should be given an opportunity to have information that they can compare with other hospitals before blindly trusting in a team with the life of your baby.  Dear parents, if you are confused as to why surgical volume matters, please read these helpful articles that discuss how higher volume centers have less complications and undeniably better outcomes  here  and also this may help put things into perspective as well...The difference between wisdom and knowledge is experience. Though I knew these facts, I didn't know until our eyes were open during unfortunate experiences that compromised my daughters quality of life.

The University of Kentucky recently made public their mortality rates after pressure from the public, on this petition...except the response they gave the public was not exactly what we were asking for.  This article states that the overall mortality rate for all combined surgeries dropped to 7.1% the year the heart program was closed.  What parents want to know is their specific volume for each surgery, and the outcomes for each.  They claim it is against HIPPA to report such outcomes in that manner.  Other centers would disagree, as they already provide this exact data publicly. 

Recently, Michigan (Motts)  posted this article featuring Waylon, publicly announcing their statistics.  I wholeheartedly respect them (and all of the other centers) for publicly showing their outcomes in their hospital year by year, in a detailed breakdown.  I know of some hospitals that are not transparent with their online stats (they are misleading, taking credit of outcomes that occurred in another facility, and they are also misleading the public of a 100% survival), and then there are many more that just display no outcomes at all.  Hopefully they will follow the example by these true Cardiac centers of excellence:

Miami Children's Hospital Cardiac team is very dedicated to empowering their patient's parents and families. They lead by example, and we highly respect them for it.
Their stats here 

Boston Children's Hospital do more Cardiac procedures than any other center in our country.  They have excellent results, and display their mortality rates in depth by procedure.  Here you will find their outcomes.

CHOP is another leader in congenital heart surgery.  They are unique in their public reporting.  They give the public 3 separate ways to interpret their outcomes. 
By complexity of surgery here    
By specific procedure here
Length of stay (my particular favorite public statistic)  here

Texas Childrens Hospital have their outcomes in a flipbook.
Their main Outcomes page to download flipbooks by specific year here

There are many other centers that display their outcomes, but I'm sure this is enough to get the point. 

For families who have BCBS insurance:   Recently I found a very interesting tool on their website.  We are a part of the "CareFirst" subgroup based on our location, so I'm not sure if the process to find this tool will be the same in other parts of the country, just sayin'...  After logging in, I went to a tab called "Manage My Money".  On the right sided column, second from the top, is a link to "Hospital Comparison Tool".  For category, I chose pediatric surgery.  Then, I chose heart surgery as the procedure.  Last, I chose "all" hospitals in the country (you need to type in your city and state, then choose within how many miles.)  This took me to a database that showed the surgical volume, complications, ect for hospitals performing pediatric heart surgery.  If they perform the procedure, you will find a "compare this hospital" checkbox next to their surgical volume.  I could compare up to 10 at a time, to see how the insurance company scored them.  Unfortunately, after consulting a Cardiologist on the accuracy of the data, it was found to be a couple years old and not 100% accurate.  However, it is believed to reflect the size of the heart programs and nonetheless, still an interesting tool.  I wrote a letter to BCBS first thanking them for the tool, but also asking them to update the results.  If you also find this tool invaluable, and are a BCBS member, please consider joining my efforts by making the same request.  It has so much more potential, and I encourage them to utilize it. 





Friday, July 19, 2013

Public Vs Private


Surrounded by my Everthing
 
 

I had made a choice to convert this blog to a private setting in May because I wasn't sure that I wanted to share our journey anymore. 

I am very honest and I own up that sometimes my personality can be too much.  I knew it would be hard and possibly impossible to reserve on opening up once I start.  When I begin to write it does take a lot of stress off me to release it so that's why I just so freely let it escape.  However, being that open leaves you vulnerable and is allowing people that don't understand to judge.

This probably will seem silly to some, but it also really bothered me that the most viewed post (and by A LOT)  is the one with all of the graphic pictures of my daughter Cecilia's neck.  I tried to think of it in a twisted positive way, "well they got a link to my blog by googling central line infection, how cool"...but really deep down it just bothered me no matter what perspective I forced myself to look at it by.  It's like the totaled car on the side of the highway that everyone slows down to try and witness all of the damage.  Looky-Loo's who don't care at all about my baby, they're just wanting to see her wounds... 

What's pulling me to leave it public is  I know that sharing my experience already has helped some people to feel like they are not alone...to feel stronger that they can make it through their despairs, or courage to share what they are feeling inside too.  That is my main purpose for sharing.  As all of this is exactly the most important tool that has helped me through while I was living it.  If I felt all alone and there wasn't a single soul in existence that cried the same tears and felt all of my emotions over the same reasons I know everything for me would have been much worse.  Simply strength in numbers.  They "held" my hand the entire time and reassured me that I was not the first to feel like that. 

Some of my posts I can not change back to public yet because they were posted on mobile and are not posting back right.  I hope to work it out soon. 

Lastly there are some posts that I don't know if I will ever make public again!  They are centered around intense anger emotions and I feel like posting in that way is not how I want to share our life.  While within those posts there can be found my perspective and experience that can be useful to other heart families, there is certainly a better way for me to get my point across than by such ugly anger. 




 
 
I'll attempt to start that "new version" of those experiences  with why I love Children's Hospitals that have dedicated IV teams in a future post. 
 
 


First scare at home (mobile post re-uploaded from sept 2012)

Cecilia made us worried this morning.  She has been a very happy girl at home.  But briefly today she was very, very different.  I feel like it was intense, spontaneous pain. She was so upset she was turning colors and wouldn't breath.  something was wrong during this crazy behavior.  But then she suddenly stopped and acted as if nothing just happened, that made everything even more eerie.   Good thing we already had an appointment!  She seemed perfectly fine there.  You can see in her pics she is happy during her ekg...  She had low sats at first and 2 echos.  The first echo had apparently 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. 




Thursday, May 2, 2013

Cecilia Vinje

heres our Love who finally decided to explore the house this afternoon <3  I love her so much!!!  This made my Day <3


http://youtu.be/Wg5HfwxCDuo

April

April was good to us! Cecilia did not use the gtube for anything other than medicine (Lasix, Aspirin, Enalapril, Prevacid).  However, I am trying to get her to take meds exsclusively oral now.  It is a fight :)   Cecilia doesnt like that.  We see GI May 13, and Cardio May 15.  It would be nice to be able to say we have no use for a gtube anymore. 

Cardio sends me copies of everything he sends to the Ped, which I LOVE.  He sends him letters after every check up.  I know, from these letters, that they have not been able to see Cecilia's Glenn in echo since she was inpatient.  And if she reacts the same way as she did last echo, they want to do a sedated echo.  I think that might be what is best. 


I just cant stop smiling about her drinking bottles!

So Florida was a lot of fun for us.  Cecilia hated the drive, being stuck in her car seat....she cried off and on most of the way and drenched herself in sweat.  I was sure the rest of the trip would be miserable because her stroller is her car seat...but I was wrong :).   She was so good and very happy!  She loved Florida just as much as everyone!

We did so many fun things.  The Wedding was beautiful.  Stacey and Olaf~  you belong to each other and I wish you a lifetime of happiness!  (there are pics on Facebook I cant put on here because my desktop computer wont turn on, I hope it is not broken)... We spent an afternoon at Downtown Disney, which is a place with a lot of shops and dining.  We went to a Dinner Show, I cant remember what it was called but it was about Pirates.  It was fun!  We spent a day at Universal Studios, and we had so much help from Grandma and Grandpa Vinje!  We went to Magic Kingdom on a Friday, and left for home Saturday afternoon.  Our first family vacation as a family of 7 was a success! 

 
 
Sophia in line for The Aladin ride





The girls on the ride. 


teacups

We celebrated our 9 year anniversary!  Married for 4...we got married on our dating anniversary so it would stay the same♥

Next up in April was the Congenital Heart Walk.  My mom took half of the girls to stay the night so I ended up only bringing Gina and Cecilia.  We got to spend time with 2 families that have shared an ICU room with Cecilia last summer. 



Cecilia + Addy.  It was great catching up with her family, and seeing how awesome she is doing!  Their family is all girls too ♥

There were sooo many people walking!  It was awesome seeing all of the support for CHD's in the Dc, MD, VA area.  We walked towards the front of the group and were almost around the lake at the end, and you can see all of the people still walking in this picture




♥Heart Friends ♥ Collin + Cecilia   I hope they will be lifetime friends!!  ♥♥

It was much more colder than I anticipated.  I think next year I will be more prepared and since Cecilia will be older she could interact with her heart friends more :)

Cecilia did not meet the sitting milestone yet, but she did something else I am even more excited about!  She first started sleeping on her tummy, and then would bunch her knees under herself.  So now when she is playing on the ground, she seems so much more stronger and is pushing up on her arms.  She just started to put herself into a crawling position and does the rocking that most babies do before they actually crawl!!!   So maybe she will just skip sitting and go right to crawling! 
I dont have any pictures of the rocking because it is a new thing she is doing, and it doesnt last long enough to take a pic.  But here she is anyway.





playing with her Heart Friends book



She is doing so well and I am so happy.



♥10 months old ♥


drinking all her formula and wanting more ♥


She was playing with her IV pole and it made me laugh...this is the only use we have for her feeding pump, is to entertain Cecilia...I am anxious to talk to her Doctors soon and find out how long until they will be comfortable taking her feeding tube out and letting her stoma close. 





I have some reservations about taking it out, but mostly excited about the possibility.

Thursday, March 28, 2013

Vacation

In 2 days we are leaving for Florida vacation with a bunch of awesome Vinje's, to celebrate the marriage of Olaf + Stacey!  ♥   It will be great and we are all very excited.


Everything with Cecilia has been great.  She is gaining weight perfectly at the moment, her o2 saturations are running 88%...she has been drinking slightly more formula than her daily requirement, and we have not used the Gtube in 3 days!!  ♥  Life is feeling pretty great.

She still can not sit, but we work everyday.  I feel like it will be before 10 months for sure.  Cecilia turns 9 months old tomorrow.

There is not much to talk about when everything is going so great!

Cecilia was sick earlier this month.  It was scary and stressful for us, and you will see why as I am posting pictures.  Cecilia doesnt get a lot of oxygen to her body as you probably grasped that part of her condition by now.  She first started showing signs of being sick Tuesday evening.  She vomited about 3 times, and had severe diarrhea, but she did not have a fever.  The following day we saw her Cardiologist in the afternoon for an echo and check-up.  He said that she looked good.  I dont know what changed from then and the next morning.  But when we woke up Cecilia was very cyanotic and looked so sick because she was dehydrated.  We stopped giving her formula at this time and just gave her Pedialyte.  After an hour or so she still felt terrible, but she looked so much more stable.  The nurse came for her weekly visit the next day and we called cardiology on call to let them know of her severe weight loss.  The next day we had to take her in to see the Pediatrician and he said she was fine enough to continue riding out the virus at home.  It was terrible watching her feel the way she was.  Now that winter is over hopefully she will go a long time without being sick.






ugh breaks my heart seeing her sick!




no more purple hands.  Thanking the Lord for Pedialyte and for the Gtube this day<3



All Better ♥


Cecilia has been teething for a couple of months...and still nothing...maybe soon




I'm sure I will write a blog sometime after Florida, but before the Heart walk on April 20th.  However, lack of updates is usually a good thing because it means we are all happy and doing fantastic! ♥

Monday, March 18, 2013

Oral feeds

So I havent been able to update because we've been sick, and then I spent all weekend re-arranging bedrooms...but quickly I want to brag that Cecilia is back to drinking bottles!  She gets 12 hr continuous, but will keep adjusting that as she intakes more volume orally.  <3   I think it clicked when she was dehydrated.  But as soon as she was better she refused the bottle again...until we ditched this yucky formula and switched back to Sim sensitive.  Im glad this happened before they go up on calories.  Right now she is on 24 calorie per ounce.  I suspect they will make us go back up to 27 cal per ounce when we have our GI check up because Cecilia is not growing.  Ok, anyway, I have a bigger update with pics  coming as soon as I have a moment to upload pictures to my computer and type it out.  But for now, just know I am so happy to see this baby improve.  Today we work on sitting.  The home PT therapist will be here any minute to work with Cecilia. 

Thursday, February 28, 2013

Family History

Besides all of the heart attack deaths on my mothers side of the family (her father died when she was young of a heart attack, just to name one person)...I don't know if it was related to undiagnosed congenital heart disease....but I do wonder. 

Congenital Heart Disease in my family:

-Cecilia has: Hypoplastic Left Heart Syndrome
-Rusty (my cousin) has: Transposition of the Great Arteries
-Jenny (my aunt, and also she is Rusty's mom) has: Anomalous Origin of the Right Coronary Artery from the Left Coronary Sinus

Cecilia sees her Cardiologist next week, and as long as all things are stable for her, I hope to pursue arranging to get the rest of my daughters hearts checked out.  Karl's heart is fine... he has had it checked this past summer.  I will eventually get mine looked at, probably later this year. 

Tuesday, February 19, 2013

Heart walk DC area

A couple days ago we signed up for 2 heart walks.  One of them, on the Eastern Shore for the AHA, has already been disabled and converted to a different fundraising event.  So we will no longer be walking on the Eastern Shore. 

But, the Congenital Heart Walk in the DC area we are still going to, and very excited about it!  And I know of a few friends also going with their CHDers... it will be a great day to see them again (or finally meet them in person)! 

This is our team~  ♥Cecilia♥  consisting of all 5 daughters, myself, and likely my Mother in law, Bernadette.  If you want to help sponsor our team for the Heart Walk you can do so here.   The money raised goes to The Children's Heart Foundation, and the Adult Congenital Heart Association.  This is the link to the main page of this heart walk if you would like more information:  http://congenitalheartwalk.kintera.org/faf/home/default.asp?ievent=1056145&lis=1&kntae1056145=FD67CF4D2CC64255B615CD77278E48D3

Please join our team and walk with us, OR make your own team and join the walk with other families effected by Congenital Heart Defects, OR help us reach our team goal of funds raised.  ♥

Sunday, February 17, 2013

Strength

 The bigger the problem is, the longer the struggle lasts...

Sometimes I feel like this journey of life gets the best of me.  It tests me in every way imaginable, and maybe I'm failing.  I'm at the mercy of opposing forces...A Destiny or Direction I have little to no control over.  I feel like I'm being dragged through time...clinging weakly to whatever I can hold onto.  A Dream.  A Wish.  But this is unrewarding.  All that reassures me is but a simple smile.  My family- my daughters.  They are it ♥.

I used to love it when "life" was out of my hands...When I didn't know and I didn't care what tomorrow would bring.  When the uncertainty was thrilling.  It was a familiar freedom.  But now...Nobody can honestly tell me everything is going to be OK. 

I was sweeping the floors, and I thought, as I often do, how badly we need new floors.  I thought Karl and I can eventually do them together.  Then I remembered the DIY flooring job we did in the girls bedrooms (it was a fail).  My Dad is great at doing floors.  But he is dead.  And just like that-- I'm broken.  It's a moment of uncontrollable pain I can't escape.  I did it to myself because I remembered.   Instantly, I think of the last time I saw his face.  It is the image I always see anytime I think of him.  It takes me back to the room in the back of the funeral home, so me and my sister could say goodbye before his cremation...  A very large room meant for a formal viewing.  Except, we could not afford a viewing.  There was nobody there but us.  Nobody mourning his body and missing him.  A huge room with nobody but us...and so much negative space.  And just a wooden box with dad inside and a sheet over his naked body.  We couldn't afford a "real" casket.  The woman arranged this "viewing" for our closure.  It was just so much space.  Walking towards him felt so far away.  He was really frowning.  His frozen facial expression of hopelessness haunts me...  But only when I stop to think about it.  When I think about him.  So I try not to do that.  That is my answer to this problem.  To this pain...  Is just to avoid it. 

People always compliment your strength anytime you are faced by tragedy or go through a difficult process.  In some ways, I understand it is an attempt to comfort you.  I don't feel strong.   How can I be if I have a mini breakdown with no warning and no purpose? There's always some painful memory teasing me...Scratching and clawing it's way to the front of my mind.  If I just stuff it back far away where I prefer to keep it, that is not strength!  Maybe, really,  it is being a coward?

Anytime I feel or experience something unpleasant, and I don't understand, I feel desperate to know "why".  If I understand it, I can prevent it.   I think my situation with Cecilia has distracted me.  On his one year anniversary of death, she had a failed extubation.  That pain of my child's struggle outweighed it.  She had her Gtube surgery the day prior to his birthday.  The fear and unknown of what was wrong with her outweighed my pain.  On the day the person responsible for his death was convicted, was the day following my close Heart Mom friend burying her daughter, Anya.  This situation, again, distracting me... and demanding my full attention and energy to keep it together.  I couldn't process any of it because I wasn't strong enough to take on anything else.  In a way I'm grateful because I don't want to remember that he's gone.  I don't want to be angry the way my brother is.

 This is a scanned version of an old (but appropriate and relevant ) note my dad wrote me when I was a teenager. 

When it is a new day, and the girls are awake, and everything is loud...I will be distracted.  But they will smile ♥.  And nobody will know that I couldn't sleep last night, but me.  And still, that is not where I can identify strength.  It can not be compared.  I can say with confidence that Cecilia and her heart friends have gone through more than I have.  More struggle than most!  And right there is where I recognize strength.  And truth be told, a resonating guilt now in my mind, punishing my heart for feeling like this when what my baby is going through is worse than what I am. 

Tuesday, February 12, 2013

the weekend


Gina Raye-  my Gigi -"Sunshine"






Julia Rose ~ "Julzie"





A couple weekends ago, Karl went home to New York to visit his family because his close cousin Kat has been fighting cancer and its not good :(.  Kat gave him this picture she took of our family a couple years ago.  I LOVE this picture! ♥  It is rare for us all to be together in a pic ♥   Sophia was our baby, and about the same age as Cecilia is now. 



♥♥ Karl + Sophia, Me + Anastasia, Gina + Julia ♥♥