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.