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!!

10 months

Sweetest Adeline, you are such a joy! This month, you started dancing to music, crawling, said "Mimi," and are very good at rolling a ball back and forth. You are a very good eater! You also went to Sunday School and MOPS for the first time. Joan, Minister to Preschoolers at Wilshire, has been kind enough to offer volunteer help to come sit and play with you by yourself if anyone is sick in your class. She sent us a lot of wonderful pictures of you playing your first day in Sunday School. I finally got to introduce you to my MOPS group a couple weeks ago. Everyone was so glad to see you, they started clapping when I got up to introduce you. You attended your first St. Patty's Day festivities and loved the people watching. You are one loved baby!!! I can't believe you are so close to being one!

We have a cardiology appointment this Thursday and could use some prayers and positive thoughts! Much love!

9 months

It is crazy to think 9 months have gone by since we welcomed you, our beautiful baby girl, into the world. You have been out of my belly just as long as you were in. Amazing! You eat very well with your fingers and are a much bigger fan of table food than purees. I started giving you a sippy cup to try out and so far you just chew on it. You understand "no" and simple instructions and imitate others' activities. You are close to crawling and have been going from sitting to all fours and rocking for a few weeks. We had a really big scare this month when you tested positive for RSV. Luckily, I think the Synagis shot you get monthly really helped and your symptoms were mild. You had your 9 month well check with Dr. Linderman and were 16 lbs 9 oz (10-25%) and 26 3/4 inches (25%). You checked out perfectly, and she was really pleased with your development. You have such a relaxed personality and are so fun to be around. Always smiling and laughing. Your favorite person is your mama! We love you, Sweet Adeline!

 

 

Our New Normal

The first time I heard the phrase "a new normal" it was a few years ago as some MSNBC pundit was talking about the recession or recovery or some mix of the two. The phrase seemed to spread quickly and was being used by some many so quickly to describe life after the financial collapse. The other day I was having breakfast with a new friend. A person I met through church who I have quickly come to trust as wise counsel. He asked me how we were doing. He knows our story and the journey we have taken so far so he simply asked, "how are you getting used to your new normal?" My first thought were those MSNBC folks each morning pouring through overnight financial headlines, but I quickly realized this is a great way to describe our last few months. You see my friend asks this question from a very unique position. He, himself, along with his wife were thrust literally overnight into a family situation that they were unprepared for. They, too, had to struggle through tough, uncertain times in order to reach their new normal. So when he asked I quickly said, "we are good." I have to admit I catch myself sometimes answering questions like this too quickly especially from friends and family that know us well. I seem to think that if I answer quickly enough they will just move on to another topic. Oftentimes and thankfully in the end they do not. They pause and patiently ask again. But this time I have to say that the quickness of my answer did not hide the genuineness of it. We are doing well. Our daily lives have, in many cases, become mundane. To me lately so many of God's continued blessings have been cleverly disguised in the normalcy of a day. There aren't the weekly visits to the cardiologist. The daily feeding logs and texts with Safe At Home folks have been replaced with laps around the house holding both girls as they laugh at each other. Sadly, and all too often, I can't see His blessings in the moment they are bestowed. It takes a little time and reflection to understand they were there all along, filling those times with blessed normalcy. So here's to the mundane and routine. May His blessings be shown to you through them as they have to me.

8 months

Addie, you never cease to amaze me. You started doing so many new things this month. You wave bye, say " bye, bye," stand while holding onto something, pick things up with your thumb-finger pincer grasp, indicate wants with gestures, say "mama" or "dada" to the correct parent, clap, and play peek a boo. You started sleeping through the night a few days after you turned 7 months old. We stopped waking you up and it only took a few days for you to start sleeping through the night. You also got two top teeth this month. You are so fun to be around and are always laughing and smiling. You are such a relaxed baby and love to sit on the floor and play. You are an absolute joy to parent!

Holiday Season

We celebrated our last Christmas yesterday with Scott's family. This has been such a wonderful holiday season for our family. Joy filled, for sure. We were in Spearman for a week over Christmas, and it was absolutely wonderful. We relaxed, A LOT! It was soooo good to get out of Dallas. Ellie is at such a fun at age now, and she enjoyed opening gifts and loved every present she got. Addie had fun playing with the paper! I have lots of pictures, so without further adieu:

Decorating cookies with Aunt Taleigh.

Ellie loves her Mimi.

My Grandma Patty holding Addie for the first time.

Playing with Pepaw.

Date night in Spearman at the Bunkhouse

We all got "Team Addie" shirts for our annual pajama picture.

Before church. Precious.