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.  

Mother's Day 2014

It is crazy to think two years ago I was a week away from giving birth to my most precious Adeline. Her birthday brings up so many emotions for me. Remembering everything that was going on weeks and months before she was born is sometimes hard.

I have been thinking a lot lately about how hard it is to understand what someone else is going through. You can't. Even if you've been through something similar, there is no way you can understand the depth of pain, happiness, etc. another person is going through.

There was a point early in my pregnancy, around 20 weeks, after we found out how severe Addie's defect was where I would wake up every day and just wanted to end the pregnancy. I wanted it to be over. All of it. I didn't want any part of dealing with it anymore. I knew it was wrong, but I couldn't help thinking how much easier it would be to take this route.

Never in my wildest dreams would I have ever thought something like that would cross my mind. But it did. I shared with Scott everyday during that time in the midst of tears about how I just wanted it to be over. I was emotionally broken. I was tired and sad.

We met with our pastor at one point early on and I told him that I understood now why people make the decisions they do regarding pregnancies. I am not condoning this behavior, just saying that I get it. I still think that it is morally wrong, but I will never judge someone based on this decision. Our job is to love not hate.

Of course, I have no regrets. Addie made me the proud mom of two precious girls. She is a bright shining light every single day. Addie is special. She is "spunky in just the right ways,"  a friend recently told me, and funny and hard not to love. She has never met a stranger and I love that about her. She is paving her way in this world with her great big smile and infectious personality. Our journey with her has made me a much better person in so many ways.

Mother's Day means so much more to me now. It is always so close to both my girls' birthdays and brings up emotions I have almost forgotten about. Being a mama is hard work. Sometimes we have to make really hard decisions. Love is hard sometimes.


Happy Mother's Day to all you mama's out there. A friend shared this trailer with me and I loved it. Please watch and know that you are so much braver than you know. Surprised By Motherhood trailer.

Cardiology results

Addie's cardiology appointment ended up being rescheduled until January 30 due to the fact that she got sick the week she was originally supposed to go. Our cardiologist, Dr. Ikemba, is the absolute best. She loves our family so very much and is the best doctor for Addie. I always go in there knowing that Addie is getting the best care possible.

Addie is at such a fun age and was being a ham her whole appointment. She is always so happy and really is a joy to be around. She loves people and people love her. She just has a beautiful spirit.

Her oxygen saturations were 89-94. Her X-ray looked great, and she didn't end up having to have an ECHO. Dr. Ikemba listened to her and said she sounded great so wouldn't need one until her next appointment in July. She had a wear a holter moniter (to see if she has any arrhythmia) home and we just got word that everything was normal from that....normal sinus rhythm, nothing slow, no problems. Such great news.

Addie's next appointment, as I mentioned, will be in July. Dr. Ikemba mentioned that we will start talking about Addie's next cath and surgery at that time. I am hoping we can wait until closer to four and a half so we don't have to worry about it for another couple years. Not that I don't think about it almost every day, but it would just be nice if she were older.

Dr. Ikemba and Addie

18 months, Christmas & family pictures

It's been awhile. I love to keep this page updated, but don't have a whole lot to write about right now. That feels good!

Addie had her 18 month well check at the first of December with Dr. Linderman. She checked out beautifully and was 32 inches (50-75%) and 21 lbs 2 oz (10-25%). She is exceeding all expectations and is above and beyond all her milestones. She is a rockstar! Addie is getting a synagis injection every month through RSV season. This will be her last year for that. The shots have been pretty terrible this year. She is aware where we are going and starts crying and saying, "Shot hurt legs," as soon as we get in the parking lot. I cry almost every time we have to go. Just something about this being a part of her life right now. All that to say, I am so glad this is the last year for them. We have a follow up cardiology appointment next Thursday and would appreciate your prayers for that. Those are always pretty nerve wracking appointments.

We had Christmas early at our house this year because we spent Christmas in Spearman. Spearman is always such a relaxing break for Scott and me and the girls absolutely love being there. Christmas was so much fun this year. Ellie had a huge list and her joy over her presents was pretty priceless. Addie was also really fun to watch! She loved everything she got.

Britt, my sister Lindsey's husband, took family pictures for us in November. He does some great work, and we got some really good pictures!

2013 turned out to be a pretty great year! Looking forward to all 2014 has to offer. As always, we appreciate you taking time to read our blog and for all your continuing prayers.

I'm over it!

In the spirit of Thanksgiving, I am about to tell you how ungrateful I am for most things that are part of my life right now. Since Scott's last post, Addie has been sick off and on. It all started with croup, then she got croup again, which turned into bronchitis/pneumonia, and I just took her to the doctor yesterday and she has yet another virus. She has been running fever since Saturday night. We cannot catch a break. I have been holding her out of church, MOPS, play dates, but she cannot get well.

Having a child that is sick for almost 4 weeks has taken the wind out of me. I am beaten down and tired. Every time we have to go to the doctor, I wonder if this is the beginning of the end for her. How terrible is that?! It is a rough way to live, but it is a reality when you have a child with a complex heart defect. I am always worried about her heart failing. It's hard. It hasn't been real fun. It makes me angry.

I miss my family. I wish we lived closer to my parents so that they could help out. I need a life line. I need a break. I always think back to the line our pastor uses at baby dedications. It is something along the lines of, give her a good life, not an easy one. I don't feel like Addie's has been either lately. Being sick for 4 weeks has been neither good nor easy.

My brother and his wife had a baby girl, Hallie, in September. I have yet to meet her because my family has been sick. That makes me sad.

I need community. I miss my friends. Staying home all day is for the birds.

Ok. I feel better. Please pray for Addie to get well.

Ups and Downs

What a trivial way of putting the last several days, even months and especially this last Friday.

Over the course of the last several months Camille and I have seen Addie breeze through a cardiology appointment as if we didn't even need to be there. But even there, hearing our cherished cardiologist explain Addie's condition to a young doctor as, "yeah she was very sick," is the type of punch to the gut no amount of emotional conditioning will ever prepare you.

Then cut to the time this summer when Camille and I were put in touch with a couple that found out they were expecting a baby with a similar diagnosis. They wanted to speak to us about our thought process on why we chose to go forward with having Addie. Those phone conversations were nerve racking. I didn't want to influence them one way or the other or preach to these people because this couple was us a year removed. It wasn't my place to tell them what they should do. They didn't need inspiration they needed an honest look into what may lie ahead for them. We told them flat out this was a hard road. A road we were now thankful to be traveling but a treacherous and painful one. It was filled with so many days where just getting through it was the greatest accomplishment.  I said that it was their call and no one else's. And frankly I don't give a shit (pardon my language mom) if you think it was wrong for me to not try to somehow talk them into keeping the baby. You can judge but I don't care. You have not been where they were.

And then there was the day the sweet Horkey family found out that their baby girl, London, would not have her Glenn but be placed on the transplant list.  We have grown to know and love this family. Their daughter is almost exactly one year younger than Addie and has a very similar diagnosis. We have emotionally and spiritually walked with this family from even before London was born. When I heard that London was going to have to already go the transplant route I was hurt. I was crushed. This not only hurt me because I care for this family but because I knew this route was one step away from Addie's road. So many things continue to go right and these help Addie avoid this path. But even as well as Addie is doing "transplant" is a word that will always stand just off to her side.

Then we get to this last Wednesday. It started with a, now all too familiar, barking cough coming from Addie's room. The debate at 2am was whether to just head to Children's or wait it out. After about 30 mins it was worse so I got ready, packed Addie's bag, and it was off to the ER. Of course Addie was a trooper and and everyone loved her. We saw a respiratory therapist who had seen her at the ICU a year before. He was now a supervisor and recognized her name from the charts and made sure to come over and help Addie through her breathing treatment. I even ran into an old client who is now a nurse there. Great to know people but when you are at a children's hospital it is not the best place to be Norm from Cheers where everyone knows your name.

And then came Friday. What should have been nothing but an "up day didn't turn out to be. Friday was the one year anniversary for Addie's Glenn surgery. She has come so far and grown so much since then. You can almost have a conversation with her. Her laugh is what Ï think of as a "joyful noise to the Lord." We are thankful every day for her and all those around us that have gotten us to this point.  But the day didn't turn out all good. The Horkey family was told that due to some complications London had an only 1% chance of her finding a matching heart for transplant. No words can express the deep pain and sorrow I felt when hearing this. The phrase "but for the grace of God go I" kept repeating over and over in my head. I was taken back to so many prior days when I had so many questions for why God had foisted this journey on us. These questions came back thinking of the Horkey family. Why had they been charged with fighting this battle. They did not deserve this. London deserved a better chance.

So yes ups and downs. Good days, bad days and days that went the full range all in matter of hours. That's what has been the last several months. I simply try to focus on the good and not beat my head against the wall trying to find reason in the bad days. Sometimes they are just bad. Inexplicably bad.  And that is fine. It sucks, but I have to understand that I won't always understand.

So in your prayers please continue to pray for Addie but please pray for London and her family. They need some more ups and the strength to plow through the downs.

15 months

Addie was 15 months on August 16th. A lot has happened since I blogged last....3 months ago!!!Addie started walking at 14 months, she recently got her first hair cut and she has 12 teeth. She has so many words that I stopped writing them down and she can say anything (scary). She still loves her bottle and has two very special loveys. She loves to dance, make funny faces, clasp her hands to pray, and play with Ellie. She also loves to play babies, climb, and assert herself. One of her favorite phrases is, "Don't do that!" She is a great eater and takes good naps.

At her 15 month well check with Dr. Linderman, Addie checked out beautifully. She weighed 20lbs 4oz and was 30 inches tall. We also had a cardiology follow-up in July. We love catching up with all the special people at Children's, but I still find it incredibly hard to be there. She also checked out beautifully there and doesn't have to go back until January 2014!! Amazing!! She had an ECHO, EKG and wore a holter home. Her ECHO looked great and her EKG and holter showed no irregularity. We did have to do a urine analysis because at one point Addie was resistant to aspirin, which is the only medication she currently takes. The urine analysis came back still showing that Addie is resistant so we had to double the amount of aspirin she takes.

Ellie is the best big sister. She loves Addie so much and is so patient with her. She starts school the first of September and is so excited. She loves to be around all her friends and can't wait to get back in the swing of things. She knows all her letters and is working on writing her name. She has all but that little e down. She can also count to 50. She loves to dance, do "gymnastics," play dolls, swim, watch tv, write and pretend. She is sensitive and has the most kind heart. She loves her cousins and would be a "Savage kid" if they would have her. :) She also loves clothes and having her fingernails and toenails painted. I really love being around her!

We visited Spearman over July 4th and had a wonderful time. We also finally found a new house. We move the first of September and couldn't be more excited. We sold our first home in March and have been in an apartment in the meantime. It has been great for the summer since it has two really nice pools. We have enjoyed lots of pool time! All in all, a pretty good 3 months. Nice and quiet, just the way I like it!!

 

 

12 months

Addie turned 1 on May 16! What a glorious day that was. It was such an important milestone for our family. We definitely celebrated our hearts out. We thank God everyday for Addie's precious life!

Addie - you have become such an explorer these last few months. You love to get into anything and everything. You are fond of toilet paper so we have to make sure that the bathroom door is closed at all times. :)  You love to put everything in your mouth and are a great eater. We transitioned you to milk after you turned 11 months and were on whole milk only (no formula) a couple days before your first birthday. You are still crawling and cruising, and I have caught you a couple times standing by yourself. I still think you are a couple months away from walking, but you have definitely made some big strides lately. You love to put things into containers and take them out again. You have definitely started using your voice and letting us know what you want and don't want. Your new words are more, milk, Ellie, uh oh, me, mouse and pool (haha!). At your 1 year well check, you were 19 lbs 2 oz (10-25%) and 29 1/4 inches (50%). You are growing beautifully! We love you so much, sweetest Adeline!

1 year & 3 year pictures

My brother-in-law, Britt, took Addie's one year pictures and Ellie's three year pictures. We snuck a few family pictures in there too. They turned out so good! Here are just a few of my favorites. Thank you so much, Britt!!!

Tempered Faith

How can I not go through this day without thinking about this very time one year ago?  At this time last year our lives were full of questions with very few answers and no guarantees.  We had no idea what was truly ahead of us in those coming days.  We had fear upon fear piling up.  The reality of Addie's diagnosis was literally right in front of us and coming whether we were prepared or not.  Honestly that day is a bit foggy. I went through the motions. I remember running some errands.  I remember I had to have a very honest conversation with my brand new secretary and try to explain what was about to happen and how I was going to try to work not knowing what we were really going to be facing day to day. I do remember that Camille and I met with our pastor. In that meeting Camille was much more forthcoming about what was truly happening. For me, I had shut down a bit.  I didn't really want to talk. I just wanted to retreat.  I didn't know anything else to do. It was this very night last year that I leaned hard on my faith.  And it was that faith, often being guided by encouraging words of friends, that pushed back.  It pushed me in a way that a good coach knows how to motivate a player.  I didn't know it at the time, but my faith was being forged and tempered. 

Simply put, without my faith that was held up and strengthen by so many with Camille leading the way, I would not be here looking back at the undeniable grace of God. 

It has been a long year.  It has been a very tough year.  It has been a stressful year.  It has been a very trying year.  But it has been a GOOD year.  Addie is well.  How can I not declare it anything less than good.  The year has been good because God is good. 

11 months!

My darling 11 month old. You are suddenly so grown up and looking so grown up. You pull up on everything and have started cruising a little bit. Your new words are baby, bottle, ball, bubble, no, dog, yeah and oh. You also said your first sentence. It might have been a coincidence, but "Bye, bye dada," is still a sentence. You like to drink out of a cup and pretend to talk on the phone. You got another top tooth a molar this month. You love your big sister so much and she loves you so much back. The bond between the two of you is something special. We have had a few extra doctor visits this month as you got croup and then a double ear infection and sinus infection. As we near your 1st birthday,  I have been reflecting a lot on what we were doing this time last year. We are beyond blessed!!!

April- Organ Donor Month

I read an article by Marv Knox this evening. He wrote about April being organ donor awareness month. Sadly I didn't even know there was such a month. Now I do and I am grateful to know this. This along with our Sunday School class's prayers for a friend of a member of the class to first get a heart transplant and then survive all the complications that go along with it made me think hard. I was reading the Knox article as I fed Addie. She fell asleep and was as peaceful as ever. But the more of the article I read and the more I thought of the young lady that received her new heart the more I grieved. I am a donor and proud of it. I feel it is one of the easiest, but most profoundly life altering things you can do to help a fellow human.

As I thought more about Addie's life, my own and the simple act of becoming a donor, the words of an old hymn came to mind:

"Take my life and let it be consecrated Lord to Thee."

The words of this hymn ring differently to me when I think of my physical body upon my death. What better way to show the love Jesus has for us and that we are called to show others than to use our body to continue the life of another? Yes, I will admit there is a large part of me that is selfish in this stance. Addie's condition makes a heart transplant a very real possibility at some point in her lifetime. I don't often think about this. In fact I try not to think about it at all but tonight I was struck by it. One day Addie may rely on the tragic end of one life to prolong hers. How can I not put myself on the line for others as others have or will for Addie? Yes it is selfish but it is also, and more importantly, the right thing to do.

Marv Knox relates that organ donation is the ultimate fulfillment of Matthew 25's lesson to care for "the least of these."

I pray that I and especially Addie are never "one of the least of these" but if we are I know there are those that have made the decision to be consecrated for us.  And I consider it a privilege to stand ready to be consecrated for whomever may be the least of these upon my passing.

Heavy heart

My heart is heavy today. I have tried really hard not to make Addie's defect my life. I don't believe it would be a good way for me to live. Don't get me wrong, I will be the very best advocate for her and will do my best to give her a good life, but I honestly don't want her growing up with people talking about her like she is the sick kid. You would never know she has a serious heart defect unless I told you. I didn't want to be parent matched to a family with a kid that has the same defect. I was scared what the other child might be like. A lot of these kids have some serious complications from surgery or just poor heart function. I really wanted to protect myself from all other stories and live our life without comparing. 

Today, I learned some saddening news about a family that was recently at Children's with their little boy Beckham. He went in yesterday for a cough and his color was off. They think he suffered a mild heart attack and he is now on life support. I pretty much cried and prayed all day. For their family, for my family, for all the families out there with children who have serious heart defects. It is so scary. I do not read any heart blogs anymore, but I recently started reading theirs. It makes me sad. 

Why my family? That question brings up so many emotions for me. Anger, sadness and guilt all make an appearance. I wonder if this will ever get easier. I don't think so. It is still so fresh and new at times. And still, there is so much unknown. We have made it ten months, and I thank God for this time. I love both my girls so much it hurts. Watching them play today made me so grateful for all the blessings we have received. I can only pray for many more years with them both. 

Please pray for the Moreno family and their little boy Beckham. 

Cardiology follow up

Today was Addie's cardiology appointment with Dr. Ikemba. I always get so nervous on these days. I had a headache before we even got there. I was under the impression that Addie was scheduled for a sedated ECHO, but Dr. Ikemba called yesterday and said if everything (sats, weight, EKG) looked ok we would wait until her next appointment to do one.

Addie never ceases to amaze me. She is growing beautifully! She weighed 17 lbs 13 oz, was 27.5 inches long, and her sats were 94!!!! Amazing. Her EKG showed no irregularity, and she is on track developmentally. Several people came to see her this morning and she showed off for everyone. She smiled, laughed, waved and said bye for almost everyone that came by. She came home with a holter monitor on. They are trying to decide whether or not she still needs to be on atenolol. All signs point to no, but this will give them a more certain answer. We go back in 4 months and couldn't feel more blessed with Addie's progress.

Thank you for your prayers and love!!