Monthly Archives: June 2013

A Good Life

Here is what we have been up to…

IMG_0864

Lazy mornings…

IMG_0974

Growing…(he was looking super cute in this outfit – thanks Abraham for loaning me your clothes)

IMG_0977

Hanging out with Sissy…

IMG_0888

CRYING…

IMG_0930

Being the Sunshine of our family… (thanks Aunt Andrea for my shirt)

IMG_0966

Hanging out at the doctor’s office…

IMG_0902

22 inches and 9 lbs, 9 oz…

IMG_0947

Camp Moriah and fishing (Nora and Lily – best cousins)

IMG_0897

Mama and David hanging out…

IMG_0961

Eating and this boy has decided he loves to eat. We are up to 85-90cc. He also loves his daddy! From the smile on Louis’ face, I’m pretty sure his daddy is crazy about him too.

IMG_0952

We went to a fun mustache birthday party – Happy Birthday, Abraham!

IMG_0982IMG_0929

Snoozing and snoozing…

IMG_0896

When David isn’t snoozing he enjoys campaigning – I think this picture is hilarious!

You asked for pictures, and I hope you enjoyed them.

My life has taken an unexpected turn. A life of checklists, medications, doctor’s appointments, speech, occupational, physical therapy (who would have thought that someone so small needs to start therapy). A life where I worry about heart defects and pray for wet diapers, and rejoice over dirty diapers. A life where God is teaching me every day to turn to Him again and again, because where else can I go with my fears and struggles. I have days where I struggle with fear, and I wonder about this unexpected journey. I wonder how God will use our family. I wonder “why.” I wonder if I’m being the best mama I can be for the two children God has given me. Then I wonder why God has given me this beautiful, amazing life. A life where I have so much. A life where I enjoy the cutest morning stretches; first smiles and coos; snuggles and giggles and laughs; crazy hair mo-hawks; finished bottles. A life where if I could, I wouldn’t change a thing. I wouldn’t change David’s Down Syndrome because he is “fearfully and wonderfully made” and perfect just the way he is, and I wouldn’t change David’s medical issues. Although the medical issues are difficult for me they are teaching me to trust in God.

Here is where we are with David – He continues to eat great. We have reached 3 ounces. I smile as I type this…remember when we were asking for prayer over 5cc bottles…God is amazing. He is up 2 pounds, 2 ounces from his birth weight. I recently showed someone a picture of David and they said, “Oh, he doesn’t look sick.” From the pics above you can see that from the outside he is a picture of health. Thank the Lord for modern medicine, ECHOS, and EKG. We will meet the heart surgeon on Wednesday, and Friday we have another appointment with cardiology.

I am still praying for a miracle – that we will go for an ECHO and the holes in his heart will be gone. I know I serve a God who can perform miracles. If He chooses to not answer that specific prayer I will praise Him for surgeons and hospitals and doctors.

thanks for the love you show my family,

abigail

A Day to Remember

Today is a special day. I like to turn a lot of small things in to special days, but this one is big. 11 years ago today, Abigail and I met each other for the first time at Camp Moriah. Camp Moriah (known as just plain “Camp” to those who attend; because compared to it, there really is no other camp) is an annual summer camp for families that wish to spend a week feeling sweaty and nasty, while learning more about God and building relationships with other believers. 11 years ago today, Abi asked me if I wanted to play volley ball. I said no, and 8 months later we were married. I mark this day as God’s sweetest providential dealing in my life; the day I met the woman who was created to be my wife.

David continues to do great, and is growing. We have no appointments this week, so no real updates as far as that goes. We are suppose to meet with the heart surgeon next week, and should start working towards a date for the surgery. In the mean time, I hope you enjoy the pictures.

-Louis

2013-06-19 13.30.21  2013-06-19 13.41.33 IMG_0881 IMG_0862

Our First Week at Home

Has it really been a week since we walked carrier and baby in hand out of the glass sliding doors of Lebonheur? Time passes so quickly. Our first week at home has been a sweet blessing. David is a great baby – happy and pleasant. Lily is as silly and loving as her daddy, and I can already see in her interaction with the baby that God could not have given David a better big sister. Lily and David have brought me so much joy and happiness over the last week. I can see with new eyes the blessing my children are. I can celebrate the “first” – our first meal together as a family, our first family walk, our first family devotion, our first night sleeping under one roof. David’s “first” feel like small victories. He has found his hands. He is learning to grasp things and bring his hands to his mouth. We expect our children to develop and learn new things. David will be no different. He might come along slower than a “normal” child, but how sweet it is to watch his victories. They make me smile.

We had 3 doctor’s appointments this week. Monday we saw our pediatrician. David was up a whopping 8 ounces from when we left the hospital. Nothing big to report from this appointment. We were just establishing a relationship with David and Dr. Shane Scott (we love our pediatrician).Tuesday we had a follow – up with surgery. David’s body has completely healed and has had no issues from surgery. Dr. Feliz was very pleased with his progress. Yesterday we saw Dr. Lee (the cardiologist). David’s oxygen, blood pressure, and heart rate were what they were when we left the hospital. His ECHO and EKG revealed almost no changes. David has AV canal heart defect. He has all four chambers of the heart, but the wall separating the chambers has 2 holes. More blood shunts into the right side of the heart, as a result more blood than normal is pumped into the lungs. The lower hole is so small it will be able to be fixed during surgery with a stitch. The top hole is larger and will have to be patched. Our plan is to continue as we are. If David becomes symptomatic we will proceed with surgery. If he continues to do well then surgery will be schedule when he is 3-4 months old.  We were thankful for the good news we received through the week. God continues to show Himself mighty.

`abigail

HOME

IMG_0840   IMG_0839 IMG_0883

We drove down County Road 144 with 2 sleeping babies in the backseat, and once again I could think of nothing but of God’s goodness, mercy, faithfulness.  We drove into our driveway, and tears ran down my face as we were greeted with welcome home signs. Lily was delighted to see her name on the sign and couldn’t wait for Sunshine to see her room. I was delighted to come home to a new flower bed, a clean house, grocery stocked pantry and fridge, fresh sheets, and a warm meal. We are blessed!

This is our third day home and we are establishing a new routine. I will admit I am easily overwhelmed, but so far the transition has been smoother than I imagined. Lily is a great big sister, and I am excited to see how God will use her in David’s life. Louis came home and jumped on the mower – I think it’s therapy for him. He has the yard looking great. If there is a nice thing about coming home when your baby is 5 weeks old, it’s that mama can hit the ground running. 

We have 3 doctor’s appointments this week. David will see his pediatrician, have a follow up appointment with Dr. Feliz (surgeon), and also see the cardiologist. We saw Dr. Lee (the cardiologist) the day we left LeBonheur, and he still felt like the heart surgery would be in 2-3 months. They like for babies to weigh 10 pounds before heart surgery. David weighed 8.2 pounds on Thursday.  He continues to eat well. A feeding does not pass where I do think of how far God has brought us. Last Sunday I was crying because I was away from David and Louis, and one week later we are home together.

Here is a passage from 1000 Gifts. It has been taped above my kitchen sink for months. I read it daily. Little did I know what God would bring into my life. I’ve prayed again and again that He would show me, teach me what I need to learn from this trial. I keep coming back to His goodness, mercy, and grace. “I can say it certain now: All is grace. This is how Jesus, at the Last Supper, showed us to transfigure all things – take the pain that is given, give thanks for it, and transform it into joy that fulfills all emptiness. I have glimpsed it. The hard discipline to lean into the ugly and whisper thanks to transfigure it into beauty.The hard discipline to give thanks for all things at all times because He is all good.”

We Are Going Home!!!

Dr. Ravi and his team just made rounds, and we are going home. We are waiting on the nurse practitioner to process our discharge, and then we will be on our way. While I am excited to get our family back home, there is also a part of me that will miss the faces around here. I have to stop here and say again what we have tried to say several times during the past four and a half weeks. I thank God for all that we have been through with our little boy. I thank God that our ways are not His ways. I thank God that our timing is not His timing. I thank God that what we think will hurt us, He uses to grow us. I’m thankful for the new friends we have met and will meet through this experience. I thank God for the friends we already had and the tremendous love and support they have shown. I thank God for Jesus Christ. It is only through Him that we could ever have the notion that God is not mad at us. It is only through Him that we could ever hope that after David’s heart and colon are fully repaired, that any of us will live a life with real purpose, meaning, and fulfillment.

– Louis

Cautiously Optimistic

I am happy to report that David is eating well.  It has been two days since the feeding tube has been removed. His total volume consumed plus his weight has increased both days.  Morgan and I made the trip from New Albany on Monday afternoon and upon our arrival we noticed an immediate change in his feeding pattern – he wanted to eat. To say that David’s feedings have been stressful is an understatement. With each feeding I would become nervous and literally sweat. We were allowed 30 minutes per bottle (any time spent longer than this only resulted in David burning too many calories). I always felt like we were racing against the clock. Each feeding would turn into a battle where we would change positions, wipe with a cold rag, tickle feet, offer chin support, squeeze his cheeks, squirt the remaining bottle in his mouth…whatever it took to get an extra cc. I can not express how much I have enjoyed feeding my baby over the last two days. I can cuddle him, talk to him, and he can finish a bottle in 10 minutes. Dr. Ferguson kept telling us that a light switch would come on and he would eat, and he was right.

I am scared to become too excited about his eating. If nothing happens through the night we get to go home tomorrow. Louis and Lily are on their way to the hospital. Please, Please pray that we get to complete this part of our journey and travel home tomorrow.

God is good and merciful to answer prayers,

abigail