Slow and Steady Wins the Race

The nurse taking care of AaronMatthew told me today, "Like a turtle, slow and steady wins the race."

I have noticed since the surgery, AaronMatthew has a decreased lung capacity. When he cries, there is not much sound and it takes a lot out of him. He will turn purple quick. Patting him on the back or butt and gently bouncing him upright helps to calm him. 

The doctors almost had to put him back on a respirator this last week. He hasn't looked like he's felt well either.

I talked to the doctor about getting a lung doctor to check on him because of the decreased lung capacity and the oxygen saturations. I also asked if he was better off before the surgery because even though he had breathing issues before the surgery, it seemed as if they became worse? He is now on hi-flow oxygen 6 liters at 50% and increasing as time goes on. Every time they try to wean him, they end up increasing it to due to respiratory distress. 

She explained to me that some kiddo's after surgery stay on respirators for awhile. She said she believes AaronMatthew is progressing better than she thought he would. She said that he had major surgery and needed to have it to repair a hole in his heart and that the heart pumping the blood has changed pressures in his body and he's just going to take some time to adjust along with the valves that will not ever function normally because they are reconstructed. 

I asked her if we would be able to go home soon if we had around-the-clock care, like a PCA. She said he's not in any position to consider going home right now. My eyes began to fill with tears. I just want my baby to be well enough to come home! (We've been tenants at Children's now for over 2 months!)

Honestly, I was ignorant to think that it would be all okay after the surgery and there wouldn't be any breathing problems. I wasn't expecting respiratory distress. I was expecting that to be fixed. With that, I have become discouraged.

I was assured that even though AaronMatthew has respiratory distress at times, we are progressing forward and not to be discouraged because he is further ahead than the doctors ever thought he would be.

For that I praise the LORD.

Thank You Jesus!!

And even though they had to go up on his oxygen, today was a good day for AaronMatthew. He still looked sick around his eyes, but not as much as he had been looking sick this last week. Finally he has been fever free for over 48 hours and his heart rate and respirations are lower. He also was not head-bobbing. He would cry when I put him down because he was comfortable in my arms and wanted to be held. I hate to leave my baby at the hospital.

He is progressing slow and steady. 

Psalm 27:13

I would have lost heart, unless I had believed

That I would see the goodness of the Lord

In the land of the living.

Psalm 27:14

Wait on the Lord;

Be of good courage,

And He shall strengthen your heart;

Wait, I say, on the Lord!

Post Open-Heart Surgery

We made it! Praise the LORD.
God is good.

My son was just a day shy of 3 months old when he had his open-heart surgery. Of course it was a big surgery and hard on his body. The Cardiovascular team in the PICU is pleased with the results of a newer echocardiogram. Not to say that it is flawless, of course there are some issues, but minor at that.

AaronMatthew was starting to collect a milky fluid around his left lung. About a week before the surgery, he had a BROVIAC put in which is like a central line of sorts that went through a main vein to his heart so they could do IV and blood access since he is nearly an impossible poke for a peripheral IV line. The thought was that the BROVIAC was causing this fluid to build up so they took it out and now there is decreased fluid in his left lung. He spiked a fever overnight which is nothing new for him. They took cultures sometime last week because of the fluid build up and nothing grew so they don't think he has an infection. They gave him a 2 day course of antibiotics as well.

Since yesterday and today, he has been breathing really fast and having a fast heart rate at times. They are tweaking his meds and this again is typical for him when he has a fever. His body doesn't like to tolerate such things.

I find it's getting harder and harder to leave him at the hospital. Children's in doing a fantastic job and I thank God for the care my son is getting, but he's not home. It breaks my heart to leave. He's getting older and recognizes me and is starting to cry when I leave. He is smiling a lot more and coo-ing. He is now reaching for objects. He loves to sit up and know what's going on. My poor baby. I just want to cuddle him and hold him forever in my arms and sing to him.

Open-Heart Surgery

“Let not your heart be troubled; you believe in God, believe also in Me." John 14:1

Our son had his open-heart surgery two days ago on December 2, 2014.

The night before the surgery I held him as he slept in my arms. All I could do is pray, pray and pray some more. I knew God had this one and He was holding us all together. I didn't want to say goodnight because I knew the next day would come and we would have to give our child completely in the hands of the Lord, not that God was holding Him and had everything all the time anyways, but it was an act of faith that the Lord had it.

The morning of the surgery, I spent some time in prayer and reading the Bible. I really desperately wanted to hear the Lord's voice and be comforted by Him.  I wanted God to tell me that it was going to be alright.

For those of you who think I am crazy that the Living God can actually talk to you, please hear me out. If you think this is foolishness, you are perishing and just click off of this webpage because you probably don't care anyways. It is my prayer that whatever you are going through right now, that as you are reading this, you will take comfort in the fact that the Living God DOES care what you are going through. He LOVES you and has a PLAN and a PURPOSE in your life, and the lives of those you love so dearly. This is my HOPE and the ONLY thing that has and is currently getting me through this. God desires to have a relationship with you through His Son Jesus Christ. He made you and formed you in your mother's womb. He says in the Bible that you are fearfully and wonderfully made. The Bible is God's love letter to us and it is a way He speaks to us. I avidly read the Bible. I find it a source of strength and encouragement. I share with you my relationship with God and how He speaks to comfort me...

EVERYTHING we experienced from the date we found out about the positive MaterniT 21 results of Down Syndrome when I was pregnant lead up to this moment. (It's important for me to note: Not all babies that have Down Syndrome are born with a congential heart defect. It is only 60 percent. And not all positive results on a MaterniT 21 test are positive. There is a window from 9-15 weeks pregnant that it can be a "false-positive because they test maternal cells that can mimic a Trisomy 21 result, they do not test fetal cells as with an amniocentesis.) I knew as soon as the results came back positive, something in me just knew he was going to need open- heart surgery. I just knew.

There were many times I cried myself to sleep at night. And many times I prayed. If I could have stayed pregnant with him forever I think I would have to avoid the inevitable. His surgery. I knew it would cause him a lot of pain and discomfort. I would have gladly traded places with my baby.

So in prayer the morning of the surgery, I desperately wanted to hear the Lord's voice. Then I got up and got a cup of coffee and was walking from my kitchen in my dining room when I almost heard what sounded like a still small whisper in my thoughts that gave me such an overwhelming unbelievable peace unlike anything else. The thought was, "This illness will not result in death, but that the Lord Jesus be glorified though it." I remember reading in the Bible, the Gospel of John chapter 11, verse 4 pertaining to the death of Lazurus whom Jesus resurrected from the dead which says, "When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it."

From that moment on, I knew everything would be okay.

We arrived at the hospital about 6:30 am and we took turns holding our baby. I asked my son's nurse Michelle to take a picture of us.

It has helped to have such a caring dedicated team of individuals in the NICU at Children's Hospital. His nurses absolutely adore him! He's lived there for two months now and has captured the hearts of many nurses and doctors. He is one of those special babies that make their very difficult job well worth it.

We went down in the pre-op area and met with the Cardiovascular Surgeon and the team of Anesthesiologists.

We prayed for our baby and gave him over to God.

They took him back for surgery prep about 7:15 am and put him to sleep. Then they put in lines to main veins, like the jugular in the neck and another line in a artery in his wrist to measure blood pressure. They also did another echocardiogram to get a better picture of the heart before they started cutting him open.

About 9:30 am the nurse came out and told us they had started the open-heart surgery to repair the Atrioventricular Canal Defect. She said they did good putting in the lines and she would come out and let us know when he was put on the heart and lung bypass machine.

About 10:30 am he was put on the heart and lung bypass machine so his actual heart could stop beating and the Cardiovascular Surgeon could make the necessary repairs and reconstruct his heart that never fully developed and close two major holes and fix valves. The bypass machine re-routed the blood to pump through the machine and do the work of the heart and lungs artificially. 

My husband and I were getting nervous about 1:30 pm and were watching the door every time someone went in and out of the waiting room.  We were looking for the nurse about word of them restarting his heart. 

I think it was about 2:45 pm or so when the nurse came out and told us that he was off of bypass and the doctor would then come to talk to us in an hour and let us know what he did. She said that they had to sew everything up.

The Cardiovascular Surgeon came to talk to us about 4:30 pm and told us how the surgery went.  He said that he came across some difficulty with re-starting AaronMatthew's heart.  He said he didn't like the rhythm's it was making and had to restart his heart 3 times. He said that would be his main concern.  There was also a white milky substance found on his left lung that was a mystery. It was taken to the lab and sampled and has not shown any infection so far. The other thought was that it could have been some fatty substance from his heart working so hard and just deposited in his left lung. He said also the early morning hours might be a little rough for his heart and to bear with them as they make the necessary adjustments they need to make. He said he appreciated all the prayers because he came across some challenges. He said the echocardiogram after surgery was one of the best he's ever seen. We prayed with the surgeon as he prayed with tears for God's healing for our baby.

We got to see AaronMatthew straight out of surgery and before he went up to recovery in the PICU.  We met him by the elevators.

The Cardiovascular Surgeon advised us to get something to eat and return for a short time later and go home and sleep.

We picked up our son Tres from a friends' house and went out to eat and I returned to the hospital while my husband and my other son went home for the night.

I saw my baby.

JUST BREATHE...

I looked at him and everything else around me ceased to exist...

JUST BREATHE...

I could not stop the tears from coming...

JUST BREATHE...

I thought, "GOD HOW COULD YOU?!!!"

Though my tears, I was feeling my heart starting to get bitter.

JUST BREATHE...

I prayed, "GOD HELP!!"

The nurse asked me if I was alright. I said "NO!"

The nurse asked me if I wanted to sit. I said "NO!" And I kept staring at my baby with tears.

JUST BREATHE...

Through the tears and the bitterness I was beginning to feel in my heart, I asked God, "Do you care? Look at my baby! LOOK! Look at him!! How could You allow this to happen? Why could it have not been me? He's in pain...God help. GOD HELP! GOD HELP! Help him God! HELP HIM! Please. PLEASE HELP. Please HELP HIM. PLEASE. Help."

I called my husband and told him and described to him and sent him a picture of our baby. He said softly, "Can you imagine what God felt when He saw his Son Jesus dying for us on the Cross?" I said, "No, but yes." I could not say a word. I could not even say a word in my heart. I was reminded of earlier in the day during the surgery, I was reading in the Bible in the Gospel of Luke all of the crucifixion of Christ. In that moment, I had forgotten that Jesus Christ died to take away the sin of the world. That through His horrible suffering and death on a Cross, there was access to God and I could live eternally with Him. The bitterness in my heart that I was beginning to feel for God disappeared and I asked God to forgive me. I began to recount God's love for us. If anyone knows our pain, God knows it. In His grace, love and mercy He DOES care. He DOES see. He DOES know. He has allowed my son to live through this life saving surgery. He has given wisdom to the surgeon, doctors, nurses and everyone involved in his care. He has shown us that His ways are not our ways. 

We have HOPE. We have FAITH. We have JESUS.

“Let not your heart be troubled; you believe in God, believe also in Me." John 14:1

He has had some bumps that are to be expected. His heart has needed to be paced with electrodes the first night of his surgery and last night and early this morning as well. The doctors did a EKG this morning and said that the rhythm's his heart is putting out is not the same rhythm's of when his heart was first started right after the bypass, which is good news. They are weaning him off of the ventilator. He has had periods of getting extremely uncomfortable as he is coming out of anesthesia.

When I went in this morning to see him he was squirming and thrashing. His face was turning purple and his face was squinting. They had to give him a different kind of sedative which doesn't affect his heart or breathing. Please pray for him in this and for us because it is very difficult to see him this way.