Baggage

I forgot I hadn't updated here about Addie's cardiology appointment. We saw Dr. Ikemba on March 30th for a checkup after Addie's cath. I cannot tell you enough  how amazing Dr. Ikemba is. She is kind, funny, empathic, and gives the best kind of hugs. Her bedside manner is also one of a kind. She called me before Addie's appointment and wanted me to know what a beautiful job Dr. Nugent had done with Addie's stent. She also wanted to calm any fears we had. She is the type of doctor that calls, and calls again. She cares. About Addie and us.

Addie had an Echo, x-ray, and had to wear a holter monitor home. Dr. Ikemba wanted to see blood flow in Addie's left pulmonary artery. That's the one that Dr. Nugent stented. She had blood flow there, and that's really all Dr. Ikemba cared  about. She mentioned that Addie was now pretty much a straight forward Fontan. Sounded good to me. Addie's x-ray looked good. All her coils, sternal  wires and stent lit up on the X-Ray are a reminder of all she's been through. It's really crazy to look at.

Addie's holter was also normal."Notmal, normal, normal," said Dr. Ikemba.  I'd forgotten this, but the way that Addie's heart is looped (to the left) makes her more prone to  heart block. This requires a pacemaker, and sometimes they put pacer wires in at the time of the Fontan in preparation for a pacemaker.  Addie shows no sign of heart block. Thank goodness. Addie wanted nothing to do with the holter though, and she was really embarrassed wearing it. I think this is the first time I have ever seen her truly embarrassed about something. This is the stuff that is really hard for me. I tried to make it seem like no big deal and we even got a cool little side purse she could put it in so no one could see. Luckily it was only 24 hours, and she didn't have school that Friday. I was really sad that Addie had a hard time with it.

We also learned that Addie has bronco malacia. Finally! Answers for the wheezing we thought was asthma. Her bronchus is compressed, which we learned during cath. Dr. Ikemba wants us to see a pulmonologist, but she is hopeful this will get better as she gets bigger (more room).

Play therapy is going well. We went in for Addie's 3rd visit this last Wednesday and Addie loves Karen. She said, "She has the coolest toys!!!" She made some glitter pictures and they talked some about her surgery. Next week they are going to make a calming jar and a picture frame she can take to the hospital. She mentioned also bringing in some of the the equipment Addie will have at the hospital so she can kind of get used to that. I am hopeful that Addie is going to be better prepared for this surgery. I know there is no way we can prepare for everything, but we are going to do as much as we can.

Some days I feel so anxious about all this and some days my confidence rules. Some days I cry about watching my baby go through this and some days I have no fear. Depends on the day really. I've stopped getting a good night's sleep, and I think Scott has too. Fears start creeping in at night, and I think we both don't feel fully rested. I'm choosing happy, but I'm having a hard time enjoying the day to day stuff, and I'm ready to just be done with surgery and move on. I'm sure this is par for the course. Still stinks.

Prayers for my girl and us are appreciated.

Sorry for the errors. I typed this in the tiniest font on my phone. Ha.

Much love,
Camille

Fontan Date

Addie had her cath on March 14th. Dr. Nugent ended up stenting her left pulmonary artery and ballooning her iliac. Him having to do anything was a little unexpected, but her cath was successful and her heart is now prepared for the Fontan. The cath day was a really long, terrible day. They mentioned the cath was supposed to take 2-3 hours, and it ended up taking more like 4.5 or 5. At about hour 3, the nurse called and said that Addie's pulmonary artery was narrowed, and Dr. Nugent was trying to figure out what to do. I started to feel extremely panicked after this phone call and was a little alarmed because the nurse used the phrase "trying to figure out what to do." During our consult with Dr. Nugent after Addie's cath, he explained that her bronchus and pulmonary artery were fighting for space under her reconstructed aortic arch. Dr. Nugent said that if he had accidentally crushed her bronchus while stenting her pulmonary artery, Addie's chances for the Fontan were basically over. I was not prepared to hear any of this, and it sounded like the possibility of him accidentally crushing her bronchus while stenting was a very likely one. I really count this as a miracle it didn't happen. Thanks be to God.


Addie's cath brought me back to reality. My attitude going into the cath was so positive. A little too positive, I think. I expected to go into the cath and be home by afternoon, which is probably never going to be the case for any of Addie's caths. We also did not prepare Addie well enough. We didn't tell her there was a possibility she was going to stay a night. She was miserable in the hospital. She was missing her sisters, and thinking she was really missing out at home. From the moment she woke up, she wanted all her bandaids, IVs, and nasal canula OFF. I had a really hard time watching her for these 26 hours. Scott and I are going to have to do a better job preparing Addie for the Fontan, if we can. I don't know if it is possible, but we are going to try. We have a consult with a play therapist, who can hopefully help us getting Addie prepared in the next couple of months.


A couple days after Addie's cath, Children's called to schedule her Fontan. It is May 30th. She is first case that day so hopefully they will get started at 7:30am.  I am praying my heart is prepared for that day. It wasn't for the cath. My emotions have been fixed on personal stuff that has happened over the last couple of months/year, and I'm done thinking about stuff that doesn't matter. I'm focused on my family and those that care for us and about us. My sweet friends bought me a book for my birthday called Brave Enough by Cheryl Strayed. It is a book of Strayed's quotes and thoughts. In the introduction, she talks about how it's common for her at book signings to be asked to inscribe copies of her books with variations of her "Write like a motherfucker," quote. Sorry for the bad language, mom. :)  She's written things like Teach like a motherfucker, Engineer like a motherfucker, Do everything like a motherfucker, etc. I was inspired. Ha.


So, without further ado.......we are going to Fontan like a motherfucker. Team Addie all the way. She is going to kick May 30th's booty. I know it.


We also need your prayers and encouragement. This journey is a hard one.


Love,
Camille

Vulnerability

This TED talk is so good. A friend recommended it to me the other day, and I feel like it did my heart some good. Take a listen if you have some time.

http://www.ted.com/talks/brene_brown_on_vulnerability#t-1147270

Cath date

We have a date for Addie's cath. It is March 14 tentatively at 7:30 am. Of course, that can change if she gets sick or we get bumped, but my heart is preparing for that  day and time. This is definitely not nearly as big a deal as her open heart surgery, but it is a big deal to me. Addie hasn't had any procedures since her last surgery, and that seems like a million years ago. She is also really scared. She overheard my voicemail from Children's scheduling department and immediately started crying. This is when I feel like I am not an equipped parent to deal with any of this. Because, if I'm honest, I'm scared too. I am such an emotional person anyway that this just kills me. Seeing her confused and scared and nothing I say eases her worry. 

Today, I went to a new Bible study called A Mother's Heart. The woman that talked today was telling a story about her son that has a blood disorder. She mentioned he was in and out of the hospital and she often recited parts of Psalm 139 during those times: 

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

I remember so many times reading those verses myself during the many storms we have endured. I'm not ready for all of this. I never have been. Addie is strong and brave, and I'm praying I can be both of those things for her as we prepare for this next chapter. 

Hope in 2017

I can't believe my last post was 2014. Things have been going so well as far as Addie's health so I haven't had much to write about. Addie is amazingly healthy and strong. She is bright light in the lives of those who know her.

I wanted to update here because Addie is going to have her next surgery, the Fontan, summer 2017 so I will probably be writing a lot more. Addie's surgeon is no longer at Children's which has been its own devastation of sorts. They are getting a new surgeon that starts in January and we plan on interviewing him sometime in the first part of next year. Addie's cath will be in March and we hope to have a little more information about the new surgeon then so we can make a decision about whether or not we will travel or stay in Dallas. One of my biggest prayers is that we don't have to travel. Our community is here and so are our two other kiddos, Maris and Ellie.

Ellie is 6 and in 1st grade at Moss Haven, Addie is 4 and in Pre-K at Wilshire, and Maris will be 2 in January. These last few years leading up to surgery this year have been fun and full of joy. All of my girls have enjoyed each other, countless play dates, precious time with cousins and family, vacations, and so much more. We have enjoyed being years out from a time when Addie's life was fragile. We are thankful for each other and are hopeful for 2017. I'm ready to get this surgery over with and move on. It's been in the back of my mind for so many years.

I feel like I need to prepare my heart and soul for this surgery. Addie is a little girl now. One with feelings and a heart for her friends and family. She is empathic, kind and has a joy for life that can't be matched. This surgery is going to be by far the hardest. We would appreciate prayers as we begin our journey towards the Fontan. We will pray for you as well.

Update

Lots has happened since Scott last updated the blog. He updated the day before Addie's birthday so since then, we have celebrated her and Ellie's birthdays, had a cardiology appointment, and started school among many other things.


We had a joint birthday party with family to celebrate both Addie and Ellie. It was a sprinkle themed party complete with sprinkle cupcakes and treats, "sprinkle the plants with water," "sprinkle yourself with accessories," and "sprinkle the paper with drawings." The girls got a princess Jeep for their birthday and it has been one of the best presents. They still ride in it almost every day and both have become pretty good drivers.

Addie had a cardiology appointment in July. Everything checked out beautifully and she will go back in January 2015. It has been so nice going so long between appointments. I hope it continues to be that way for a few years. Dr. Ikemba, Addie's cardiologist, did mention that if everything keeps going the way it is (good) then we are looking at her Fontan before kindergarten. I still struggle with doing it then if it isn't absolutely necessary, but I truly believe Dr. Ikemba is one of the best doctors around so would weigh our opinion. She cares about our family and Addie so very much and always makes me feel like we have the best care available. I really love her and trust her opinion.


This summer, we went with my family to the JW Marriott in San Antonio. We all had such a great time. The girls loved spending time with their cousins and having playmates all day every day. There is so much to do there that you never have to leave, although we did go into San Antonio one night to see my Uncle Ro and Aunt Janet and their family. We enjoyed the waterpark, watching movies at nighttime, and a band one night. It really was lots of fun!  I also took the girls to Spearman for a week in July. They love going there. The pace is so much different than Dallas. It is really a breath of fresh air for me.


Both girls started "school" at Wilshire at the beginning of September. Ellie asked all summer when school started so was super excited to go back. She has one of the same teachers that she had last year, Ms. Jackie, who is one of Ellie's favorite people (and mine too). Addie was also pretty pumped about starting school. She is going one day a week this year and loves it so far. One of Addie's teachers, Ms. Amy, has been a friend of ours for a long time. When I found out that she was going to be Addie's teacher, I almost cried. I was really dreading telling her teachers about her heart history for some reason, but I didn't have to since Amy already knew. I really think we couldn't have asked for better teachers for both our precious girls this year.

We are good. Addie is good. Ellie is good. Scott is good, and I am good. It is easy to forget that Addie even has any health issues because she is so "normal." She is spunky, fun, and man is that girl funny. Although it is easy to forget at times, I am often reminded of the severity of her defect. I have chosen not to make this my life and by that, have chosen not to befriend many people in the heart world. Sometimes the weight of others' issues can be suffocating to me. Only because I know that could be us. There have been a lot of terrible things I have seen lately, and it makes me grateful that Addie is doing as well as she is. That we are doing as well as we are. We are grateful and happy and that is all we can ask for right now.

Past/Present/Future

Here it is almost two years to the day that Adeline was born.  So much good has happened since that day that it is impossible to catalog.  I have to admit though that when it comes to her birthday I do still have memories of many tears shed and many, so many unanswered questions and fears.  Maybe those will fade.  Maybe they won't.  Maybe it is just part of the story or maybe it shouldn't be.  Obviously I just don't know the answers to these questions.  But something that keeps coming back to me is that unanswered questions must not always equal fear.  And that's what I have to keep remembering about our sweet Adeline.  Her past was so full of unanswered questions.  All of which led to fear.  Thankfully her present, though still peppered with unanswered questions brings about less fear.

The next thing to conquer is her future.  The questions abound as to what lies ahead for her.  Admittedly this is the same with our other daughter and any child I would imagine.  I wonder what her next couple of decades will be like.  I usually stop myself though when I am about to speak of Addie as an adult or even a high school student.  It is not at all that I don't believe she will be but the unanswered questions linger. Positive stories of Addie-like kids in their 20's are balanced against kids that need transplants before age 8.  In my mind I make light of thinking about Addie's future like the old baseball tradition of the team not talking about a no-hitter while it is in progress for fear of jinxing it.  I feel like Addie's progress through all of this these two years has been the early innings of that no-hitter.  Hush.  You can think about it all you want, but just don't talk about it. But it is Addie's unanswered future that keeps me from talking about it most times.  What she is going to do next week or next month, even in the next year or so, those are fine.  For some reason they don't really count.  It is the times when I think about junior high or high school.  Those are the times when I don't want to audibly speak about what might happen.  So I will sit here and just rejoice in the fact that she has done so well.  The unanswered questions, well they will always be there.  I try to leave the unanswered, simply as that, unanswered and not let them blossom into anything resembling fear.

I read a portion of a devotional last week written by Frederick Buechner that really stuck with me.  It said, "we cannot live our lives constantly looking back, listening back, lest we be turned to pillars of longing and regret, but to live without listening at all is to live deaf to the fullness of the music."  This spoke to me because I hope it describes how I am listening to all that life is telling me through Addie.  I try to focus not on the past, listening too much to it that I am frozen in place, but to listen just enough to fill me with some wisdom on how to carry out the present and a guide towards a better future.

So May 16, 2014 is not only a wonderful time for me to look back and remember but it is an opportunity to for me to take in the present fully and celebrate Adeline to the fullest.  But let's just not talk about it.