Monthly Archives: August 2013

Answered Prayers

This time two weeks ago I was sitting with friends and family in the surgical waiting area at LeBonheur. I knew David was on a bypass machine, and all I could do was sit and pray. We prayed often that day. We would gather in a circle hold hands and pray. I’ve thought alot about prayer since David’s birth. I want God’s answer to be “YES,” but He is just and good and faithful even if He answers with a “NO.” The last two weeks I have been living in the reality of a “YES” answer from God. I can not express how thankful I am to be home once again with my two children. I recently read this passage from a devotional book by John Piper, “God’s omnipotent exuberance to do us good is one of the most freeing discoveries a human can make. Oh, that we might believe it and savor it and bring it to mind again and again until it is our very nature to feel the truth that ‘the godly are designed for unknown and inconceivable happiness.’ Unremitting confidence in this truth would truly transform our attitudes and keep is steady in the face of great adversity.” Every time I see David’s chest I whisper a prayer of praise and thanksgiving. His 6 inch scar is all that remains of his surgery, but the scar will serve as reminder of all that God has done for us – a reminder of all the prayers He has answered on David’s behalf. God would have been just as good if He answered our prayers with a “NO,” but I can not praise Him enough for his “YES” to my heart’s desire.

During our stay at LeBoneur I thought about all the hurting children and parents who have walked those halls. I have prayed more and more for these families – families I will never meet. I pray for the little girl who came into the CVICU sick with a virus that attacked the muscles of her heart. The doctors told her mother she had the stomach virus, and three weeks later she was on a ventilator. I pray for the little boy who had cochlea implants. He is four ears old, and his parents are hoping he will be able to hear for the first time in his life. I pray for a NICU mama that we met during our stay at LeBonheur – the Lord answered her prayers with a “NO.” I pray for another NICU family whose baby was born 2 days after David, and they are still in the NICU. I’m praying for a woman I met a few days ago. Nine years ago they spent 8 months in the NICU with their son. God answered their prayers with a “NO,” and they took their son home to die. The Lord gave them two more biological children, and now they have given their lives to adopting children who are not wanted by their own parents. Children who have severe brain damage or cerebral palsy. I met their son Dillon. Dillon was in a wheelchair, and could do little but grunt and become excited about seeing David. This mother stroked his hair, rubbed his arm, and couldn’t talk enough about God’s goodness and faithfulness. Even in a “NO” answer from God, she was happy and her life had been forever changed by His answer. I want to live in the truth that God does what is best for His children – ALL THE TIME!

David had his two week check-up with Dr. Knott-Craig. We couldn’t be more thankful for his good report. Dr. Knott-Craig couldn’t hear his murmur, and the XRay showed that his left valve is leaking less. The leaking has gone from moderate to minimal and should be completely gone in 3-4 months. David continues to do great. He’s back to his sweet, happy self.

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I will be forever thankful for this man.

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Lily has turned into a big helper! She wants to feed David and help change diapers. She takes initiative and is great with her little brother.

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It’s birthday week for Lily. She will be four on Saturday. WOW! Where does the time go? When I was growing up my mom made a really big deal about birthdays. We didn’t have a day we had a whole birthday week. I  hope to carry on with this tradition. We are planning a pirate birthday party, and we are counting down…

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I am happy! I am blessed!

Going Home Earlier Than Expected

The doctors just made rounds, and we are going home tomorrow. David is doing great and they see no reason for us to stay any longer. We were expected to stay for at least a week after surgery due to various reasons including a sluggish colon due to the previous colon surgery. In God’s mercy, David has had no set backs or delays. Abi and I were talking this morning about the goodness of God in bringing us through the past three and a half months. You all have been a big part of that goodness. We have received cards, money, leave days, meals, gift cards, visits, phone calls, prayers, compassionate nurses and doctors (some of whom we have established on-going friendships), hugs, cries, and more encouragement and support than we could have ever expected. Thank you again for your love. We are excited about our son getting to meet the army of people who have loved and prayed for him without having the opportunity to meet him. His quarantine will be lifted as soon as his chest incision heals. At the end of all of this, we can say with more confidence, “The Lord is my shepherd, I have no unmet needs”

-Louis

PS: Smiley Face says hello

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Fearfully and Wonderfully Made

The dreaded Monday morning had finally arrived. We were all piled up in our bed when Lily realized what day it was and said, “I don’t want it to be heart surgy day.” I was experiencing an odd mix of emotions – anticipation of having the surgery behind us. Fear of the unknown. Would this be David’s last night with us in the comfort and safety of our home? Would we return home with our Sunshine? We packed up and headed out the door. We dropped Lily off at my sister’s house. Lily barely took the time to tell us goodbye. Uncle Joseph had built a really neat tent and that proved to be much more interesting to her. The Lord answered our prayers. We left Lily happy and playing.

When we arrived at LeBonheur we had a few hours of peace before the pre-operation activity began. David had to get a chest X-Ray (which was a hilarious experience), an IV for labs and then also for the fluid, steroids, and antibiotic they started later in the day. There was a little trouble with the IV. Dr. Knock-Craig only allows 2 sticks, so the charge nurse was very unhappy when she realized after 2 sticks there was still no IV. Dr. Knott-Craig did approve a third stick but only if anesthesiology performed the procedure. They brought up an ultrasound machine and the IV was placed in his foot. David was not too happy about all the sticking – I’m sure you can imagine. Fluids began at midnight, and steroids and antibiotics began at 3 am. I couldn’t feed David after midnight, so he was a little restless; but overall he did very well.

Family began to arrive at 5 am. We had an hour of family time with David then everyone cleared out so that Louis and I could be with David before we took him down for surgery. Louis and I prayed, cried, and held our Sunshine. It was a sweet, emotional time – a time where we both cried and begged God to me merciful. We prayed for peace and acceptance for His will in our lives. We prayed for the surgeon’s skill. We thanked the Lord for LeBonheur, Dr. Knott-Craig, and for this precious baby boy He had given to us.

They came to get David at 6:30am. Louis carried David, and we walked hand in hand down long halls and an elevator ride to the pre-operation holding room. They brought us warm blankets, and we waited for the anesthesiologist.  The anesthesiologist was very kind, compassionate, and patient with this crying mama. He explained the procedure, the risk, and then they hand you the consent form. You have to sign it, but I hate those forms. A form that tells you all the risk, frees them from liability if something happens to your child, but you can’t not sign. David’s heart had to be fixed. The time was finally here. As my tears ran down my face and onto his forehead I kissed him and whispered my love. The anesthesiologist was waiting with warm blankets and promises that they were committed to taking care of David as if he was their child. We handed David over and watched as they took our little boy through two large doors – the doors closed, and I could no longer see my baby boy.

They called at 8:20 to tell us the incision had been made. At 9:20 they called to tell us that David went on bypass at 8:40, and that Dr. Knott-Craig was half way through the repair. At 9:50 we received another call that David was off of bypass, and they were closing the chest. A nurse came to get me and Louis, and we waited to see Dr. Knott-Craig. Dr. Knott-Craig came gliding (he glides more than walks) in swishing around coffee in a styrofoam cup, takes a look at my red, puffy face and says, “Why have you been crying?” I wanted to laugh (maybe I did). He told us the surgery was successful. David was in the beginning stages of heart failure, and he found 4 holes instead of 2.  The right side of his heart was perfect and the left side might have a tiny leak but should correct itself with time.

We waited about 20 minutes before we could see David.  I had been dreading this part. A few days before surgery I had stumbled upon a photo of a baby who had the same repair as David – IT WAS ALOT TO TAKE IN. I was so relieved to see him that I didn’t care about all the wires and tubes. Louis and I walked into the recovery room and there was our brave Sunshine. This little boy who has been through so much in his three months of life. There was a ventilator. 2 chest tube to drain fluid and blood. A sensor on his forehead to measure oxygen to his brain, another one on his back to measure the oxygen to his kidneys. There were seven medications going through either his central or arterial lines, and an IV in his foot.

We are 48 hours into recovery, and David is doing all the right things. We are down to 2 oral medications, the arterial line (which will come out this afternoon after labs), and oxygen (which will be discontinued tonight). His labs have been perfect and all his vitals are great. David is eating well and having dirty diapers. We’ve been able to hold him today, and I have crawled in the bed several times with him. We get nice and cozy and snuggle. We should be moved out of the CVICU tomorrow. We will spend a few days in a step-up room and then we should be discharged.

“I will praise thee; for I am fearfully and wonderfully made.” Psalm 139:14

Oh, how true this verse is. I have learned so much during our NICU and CVICU stay. My knowledge is very limited compared to that of nurses and doctors, and I can not even begin to comprehend the mind and knowledge of our Almighty God who created all the intricate parts of our bodies. A God who has blessed men with knowledge to fix a tiny heart. A heart no larger than a small lime. God has given men the skill to stitch vessels and rebuild walls and valves of a heart. He has created our bodies with amazing healing abilities. I stand in complete awe of this God who has blessed beyond what I could ask or think.

– Abigail.

 

 

Recovering Well

David is recovering very well. He is heavily sedated, but has woken up a few times (only to find himself being put back to sleep). The doctors and nurses are all very encouraging about his progress and his rate of recovery. The ventilator was removed last night, and he is breathing great on his own. His oxygen levels are great! One of the symptoms of his heart condition was that he constantly held low oxygen levels. We were amazed to see that this was immediately corrected by the surgery. His heart rate has also slowed to a normal rate. Prior to the surgery it was beating too fast and working too hard in order to keep everything flowing in a normal way.

The nurses will be slowly weaning him off of tubes and medications throughout the next day or two. We are expecting to be out of the CVICU and in a regular recovery room within the next few days as well. David began eating a little bit this morning and will increase his intake as the day progresses.

Abi and I had a great nights sleep last night and woke up feeling good. Once again, God has been very good to us and we do not want to take that for granted, or let His mercies pass by without expressing our gratitude. We will continue to keep you posted as things progress. Thank you for walking with us, and may the God of all comfort, comfort you in your afflictions as He has used you to comfort my family in ours. We have a few pics below.

-Louis

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Snuggling up with daddy the day before surgery

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This is immediately after surgery with his full array of recovery accessories. Each screen is a different medication.

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Enjoying some food with mamma.

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Our little cutie pie

David, Surgery, and the Mercy of God

We are thankful to let you know that David’s surgery is complete and was successful. When they removed his heart, they found 4 holes rather than 2 and also discovered that he was in heart failure (he was not far enough along for us to notice the symptoms). Dr. Knott-Craig told us that the repair of the valves went very well. He said that the right valve was perfect, and the left was a little leaky, but would correct itself as he grew. David is now in the cardiovascular ICU getting a little R&R.

We are thankful for all of your prayers and support during this time in our lives. This was very difficult, but not as difficult as it could have been. God has been very merciful to us in many ways. I spent last week praying for God to spare my little boy. I also spent a lot of time praying for the strength to bear the loss, if God chose to take him from us. I am thankful for God’s mercy in allowing us to keep our little sunshine through this experience. I can say along with the Psalmist, The Lord is my (our family’s) Shepherd, and He shepherds well. He has been our sun and our shield, and He has withheld nothing good from us.

We will be here for 5-7 days. Please continue to pray for David’s recovery. We love you all and are thankful for your love.

-Louis