July 30, 2009
For me, this was one of my first especially challenging days. This was the day I was faced with a tough reality. I was faced with the straightforward facts that Jonah may not survive. As you see by reading this, it was an up and down day all-around.
“A big step forward and small steps back. It's natural through-out this process.
Jonah passed his trial run off support yesterday with flying colors. Dr. Michi came in and removed his life support yesterday at 3:00 PM. JONAH IS DOING AMAZING. That's right - AMAZING.”
Jonah had been doing so well with everything he endured, that setbacks were not normal for us. We were thrown some curves, some things were in the air and our lives were very unstable. The words in CVICU that are often repeated - “two steps forward, one step back.” It’s that one step back that can kill your spirit sometimes, and it was no different for me on this day.
“However, a small step back. His hands and feet are turning colors. We had noticed them turning colors the past few days. The nurses kept telling us it was one of the medicines he was on - it was taking blood from his extremities and constricting the blood vessels. Fine. Today, things are much worse. Dr. Michi is in with him now. He's bringing him down off the medicine to see if that's what is causing it. It could also be clots from taking him off the support but he said he has a plan for that, too. So, through this small step back, I don't have the heart to write today.”
You don’t know the agony you feel walking into your son’s hospital room and seeing his feet and hands purple. Not a little blue….dark purple…nearly black. It was the precursor that you never want to see. It was the tint of all things dying. And it was killing me, too.
“The power of prayer. Jonah's hands and feet are returning to their normal color. I've had a rough day but not as rough as Jonah. But fortunately for him, he won't remember it. I've decided that I can't handle the "bad" days. The doctors have prepared me for this but today, I lost it. After crying for an hour and completely blaming one doctor for Jonah's setback, I was sent to counseling today.”
My own strength was tested this day and I failed wretchedly. I can recall the sense of complete rage in my mind. I felt like someone had failed Jonah.
“The counselor is now following me around like I'm deranged and could go postal at any moment. I was able to vent and work through some things that I was keeping bottled up. But I did feel like Jonah had been doing so well with his team of doctors and last night, he had a new doctor, and the bottom fell out. I blamed her outright, but sometimes, I think we need someone to blame.”
I am his mother. I was the one person to stand up for him, to defend him and to protect him. Once he was stable and his extremities began to recuperate, I was able to get out the fury that had bottled up in me that day. I wasn’t sure if this was a sign of strength or weakness but I felt as if we had failed Jonah, too. I was frightened. I was fearful that in trying to mend Jonah, we were making things worse. I’ve always emphasized quality of life over quantity of life. Did I want Jonah with no hands or feet? Was that any way for a child to be raised? Was I being selfish?
“The team up here is very forgiving of mommy's. We're a tough crowd. We are allowed to feel what we need to feel. But on to the little man, he's cruising right along again. He's back on ECMO - something we wanted to avoid at all costs. But since he's been on it, his kidney's have been functioning again (he's peeing!) and the color is returning to his extremities. Dr. Michi is going to start performing more tests on him tomorrow to see exactly what is going on in Jonah's body that he won't stabilize himself. His tests on his heart have all been good.”
We recovered from our grueling day and a plan was put into place to look into Jonah’s body deeper and see what was causing the problem. Jonah’s thumb on his right hand never recovered and we were told it would have to be amputated in due course. I kissed Jonah, and smiled, “You’ll just have to be left-handed.” And my evening went on.
“The doctors have not given up hope that they can fix Jonah. And while I did get discouraged today, and was afraid I was losing my faith, I am back on track now.”
My heart skips a beat and my breath is hard to come by when I think of these days of trials and tribulations of the worst kind. As a family, we faced so much in a short amount of time. Every day was borrowed. Little did we know that we had less than a week left with our sweet baby.
Monday, July 30, 2012
Saturday, July 28, 2012
July 28, 2009 - Jonah's 9th Day
July 28, 2009
“Little Jonah had another good night. He had a rough day yesterday but he was a trooper and he pulled through it beautifully. Yesterday afternoon, the results of his echo showed a blood clot in his heart. Dr. Michi came in and performed an 1 1/2 hour surgery on him and removed it. This man is truly a gift from God. Jonah's numbers did better and Dr. Michi said he had planned to move forward with removing Jonah's support today.”
“About 8:30 last night, Jason and I went to see Jonah again, and his room was full with several nurses and doctors. I panicked. His nurse met me at the door. He said there had been some bleeding and they were talking to Dr. Michi to see what he suggested they do. They did an x-ray, and stopped the bleeding. Dr. Michi said it could have been post-op bleeding or because he had respiratory therapy that afternoon. Regardless, it wasn't enough blood to be anything major but they did take their precautions and moved up his support a little.”
These were the moments that instilled panic. We walked to Jonah’s room to discover a room jam-packed with staff. These are the moments when you nearly drop to your knees and bawl. Fortunately, this was a trivial situation and was easily fixed. It could have been much worse had his nurse, Brian, not taken it seriously.
“When we walked in, his nurse started telling about how he discovered the bleeding. He said "Jonah had his eyes open so I walked over...." HE HAD HIS EYES OPENED?? Tears came to my eyes - I hadn't seen his eyes yet. The nurse smiled and said "He'll do it again. Let's turn the light off." So, with everyone still in the room, Jason and I stood by in anticipation as they turned the lights down. A few minutes passed, Jonah opened his eyes wide and stared right at me and Jason. We stood there for about 5 minutes just locked in eye contact and talking to him through our tears of joy. My baby is beautiful.”
I remember this moment like it was yesterday. Jonah opened his eyes and look intently at us. His trance was locked in on us, beautifully. His head shifted to spot Dr. Michi standing on the other side of his bed. They locked eyes for a second and Dr. Michi whispered, “Look at your mommy and daddy. You don‘t want to see me.” And on cue, Jonah shifted his head back to us. He kicked his legs in excitement and held tight to my finger. We talked softly to him and he puckered his lips, unable to make a sound. Jason massaged his head and Jonah wrinkled his forehead. It was one of the best moments ever and I didn’t want to leave. After a few more minutes, Jonah drifted off back to sleep and like all our moments, it was brief. I felt a new bonding with Jonah. I felt closer to him. I can’t really put it into words but we both knew the importance of that moment. Three physicians, four nurses, and two happy parents - not a dry eye in the room. Everyone felt the importance of that moment.
“I also had the opportunity to do several other "firsts" yesterday that so many moms take for granted. I was allowed to put his diaper on (although it's just for vanity purposes) and I brushed his hair. I helped position him on the bed, so I was allowed to touch his back and his bottom. My touching him has been minimum - limited to the hands, feet and face. I hope he loved it all as much as I did.”
Peter, Jonah’s ECMO coordinator, pushed me outside of my comfort level. He asked me to take care of Jonah. To help him turn Jonah, to help fix him up and bathe him. Peter was the only nurse that asked for my participation. We rolled Jonah on to his side and I patted his tiny bottom. Jonah stuck his tongue out in response to the pat.
“I saw my son's beating heart today. The ECMO coordinator, Peter, suggested I do it. I looked. They had been covering Jonah when I walked in the room - these nurses are learning just how much mom can handle. Jonah's chest is still open. It wasn't as bad as I thought it would be. It was actually quite amazing."
Peter encouraged this moment. He forced me into it. I never wanted to see Jonah’s heart. Peter made it sound as if it was an art form to watch a beating heart. I knew I would never get the chance again. And Peter was right. It was unimaginable to watch Jonah’s tiny beating heart. God’s perfect creation. It brought tears to my eyes as I caressed Jonah’s hand. I never had to have Jonah’s chest covered again. I learned to appreciate that beating heart!
“This morning, Jonah opened his eyes for me again, and held tight to my finger. He finally loosened his grip after ten minutes, letting me know that he needed his rest. He has a big day today. We're hoping and praying to remove him from support.”
That evening, Jonah was removed from support with great success. My little baby was living and thriving on his own. His body was doing what it was supposed to be doing and he had come a long way. Our journey was still continuing, still amazing and still emotion-driven. But it was a journey.
“Little Jonah had another good night. He had a rough day yesterday but he was a trooper and he pulled through it beautifully. Yesterday afternoon, the results of his echo showed a blood clot in his heart. Dr. Michi came in and performed an 1 1/2 hour surgery on him and removed it. This man is truly a gift from God. Jonah's numbers did better and Dr. Michi said he had planned to move forward with removing Jonah's support today.”
“About 8:30 last night, Jason and I went to see Jonah again, and his room was full with several nurses and doctors. I panicked. His nurse met me at the door. He said there had been some bleeding and they were talking to Dr. Michi to see what he suggested they do. They did an x-ray, and stopped the bleeding. Dr. Michi said it could have been post-op bleeding or because he had respiratory therapy that afternoon. Regardless, it wasn't enough blood to be anything major but they did take their precautions and moved up his support a little.”
These were the moments that instilled panic. We walked to Jonah’s room to discover a room jam-packed with staff. These are the moments when you nearly drop to your knees and bawl. Fortunately, this was a trivial situation and was easily fixed. It could have been much worse had his nurse, Brian, not taken it seriously.
“When we walked in, his nurse started telling about how he discovered the bleeding. He said "Jonah had his eyes open so I walked over...." HE HAD HIS EYES OPENED?? Tears came to my eyes - I hadn't seen his eyes yet. The nurse smiled and said "He'll do it again. Let's turn the light off." So, with everyone still in the room, Jason and I stood by in anticipation as they turned the lights down. A few minutes passed, Jonah opened his eyes wide and stared right at me and Jason. We stood there for about 5 minutes just locked in eye contact and talking to him through our tears of joy. My baby is beautiful.”
I remember this moment like it was yesterday. Jonah opened his eyes and look intently at us. His trance was locked in on us, beautifully. His head shifted to spot Dr. Michi standing on the other side of his bed. They locked eyes for a second and Dr. Michi whispered, “Look at your mommy and daddy. You don‘t want to see me.” And on cue, Jonah shifted his head back to us. He kicked his legs in excitement and held tight to my finger. We talked softly to him and he puckered his lips, unable to make a sound. Jason massaged his head and Jonah wrinkled his forehead. It was one of the best moments ever and I didn’t want to leave. After a few more minutes, Jonah drifted off back to sleep and like all our moments, it was brief. I felt a new bonding with Jonah. I felt closer to him. I can’t really put it into words but we both knew the importance of that moment. Three physicians, four nurses, and two happy parents - not a dry eye in the room. Everyone felt the importance of that moment.
“I also had the opportunity to do several other "firsts" yesterday that so many moms take for granted. I was allowed to put his diaper on (although it's just for vanity purposes) and I brushed his hair. I helped position him on the bed, so I was allowed to touch his back and his bottom. My touching him has been minimum - limited to the hands, feet and face. I hope he loved it all as much as I did.”
Peter, Jonah’s ECMO coordinator, pushed me outside of my comfort level. He asked me to take care of Jonah. To help him turn Jonah, to help fix him up and bathe him. Peter was the only nurse that asked for my participation. We rolled Jonah on to his side and I patted his tiny bottom. Jonah stuck his tongue out in response to the pat.
“I saw my son's beating heart today. The ECMO coordinator, Peter, suggested I do it. I looked. They had been covering Jonah when I walked in the room - these nurses are learning just how much mom can handle. Jonah's chest is still open. It wasn't as bad as I thought it would be. It was actually quite amazing."
Peter encouraged this moment. He forced me into it. I never wanted to see Jonah’s heart. Peter made it sound as if it was an art form to watch a beating heart. I knew I would never get the chance again. And Peter was right. It was unimaginable to watch Jonah’s tiny beating heart. God’s perfect creation. It brought tears to my eyes as I caressed Jonah’s hand. I never had to have Jonah’s chest covered again. I learned to appreciate that beating heart!
“This morning, Jonah opened his eyes for me again, and held tight to my finger. He finally loosened his grip after ten minutes, letting me know that he needed his rest. He has a big day today. We're hoping and praying to remove him from support.”
That evening, Jonah was removed from support with great success. My little baby was living and thriving on his own. His body was doing what it was supposed to be doing and he had come a long way. Our journey was still continuing, still amazing and still emotion-driven. But it was a journey.
Friday, July 27, 2012
July 27, 2009 - Jonah's 8th Day
July 27, 2009
At this point, the days were becoming one. My days were crammed with countless emotions. Fear was the principal one. Each time, I paced back to Jonah’s room, my heart would plummet to my stomach if his doctor was in his room. You never know what news a doctor is going to bring. You hope for the best but prepare yourself for the worst. I don’t believe a person can wrap their mind around the intensity of this fear unless they are experiencing it themselves. Your child’s life suspended in a very delicate balance. It hurts every inch of your body to watch the days unfold, not knowing what was in store.
“Jonah had another great night. He tried to escape last night so they had to up his morphine just a bit. I've talked to him about this and he promises not to do it again. He started kicking and moving his arms around and acting like a typical newborn...but he doesn't know any different so the nurses didn't discipline him too much.”
Jonah was thriving and trying to become a ordinary newborn. He made faces that made us believe he wanted to whimper or sometimes, smirk. He would shift his head in our direction when we talked to him, and he was getting stronger each day.
“Today, Jonah is a week old. We are so thankful for him and blessed to have him in our lives. He's getting cuter each day and starting to make more facial expressions. He's responds when I kiss on him (which is alot) and we've noticed he's ticklish in his feet.”
I remember his little legs kicking each time we would pat his feet and it was the sweetest movement. Jason and I would giggle as we tortured him by continuously tickling him.
“His surgeon, Dr. Michi, was in his room this morning when I visited - he smiled and said "You son do good." He is Japanese and we sometimes have a communication gap but he knows the words I need to hear.”
“He's still making his adorable facial expressions but only now, I can't kiss him anymore. They asked me stop doing that. I will listen to them only because it's my sons health.“
Days became more critical for Jonah as we prepared to remove his support. The fear of infections and germs forced him to be put on gown-and-glove isolation. This didn’t stop us from spending time with him but it did limit our contact. We no longer had skin-on-skin contact but glove-on-skin, which did not offer near the bonding experience we both wanted.
“They are lowering his life support and he's responding well to that. While they are lowering it, his body has to start producing everything itself. It's pretty neat to learn all this information. He's on an ECMO machine - an external heart and lungs. He has been on 110 kilos of support. They lowered it to 90 yesterday and then again to 80 last night. A few more days, and we're praying to have him off ECMO completely. Then, they can close his chest up. And that means, one step closer to momma getting to hold him.”
Jonah’s chest was still wide open from his first surgery on day 3. His tiny beating heart was there for us all to see. Only I wasn’t looking. Jason enjoyed the educational process of it all. He soaked in all the information and registered it. He would examine the drawings, look at Jonah’s actual heart and ask questions. I just wanted to hold my baby and I couldn’t.
“The cardiologist is still undecided about the pacemaker. He said sometimes it can take up to 7 days before the heart gets into rhythm again, so we just need to wait and see. He's not calling it just yet. Either way, we can handle a pacemaker.”
At first, I was a little saddened that he might require a pacemaker. Disappointed for about five minutes. In the whole scheme of things, what was the big deal about a pacemaker. Just give me my child and let us go on with our lives; pacemaker and all. Jonah’s life was still critical each day and I was allowed to stay at the hospital 24 hours a day, setting up camp in the waiting room. I couldn’t see life outside the hospital and did not care to venture away from that floor. I didn’t want to miss one second of Jonah’s life. Fear had driven me to become a recluse in a public setting. Anytime I stepped on the elevator, anxiety would completely take over and I could only think of returning to the CVICU. My security was the waiting room and Jonah’s room. I felt calm beside him, knowing he was still alive and with us. I felt peace knowing if something did happen, I would be right beside him through it all, holding his little hand and sneaking in a kiss.
At this point, the days were becoming one. My days were crammed with countless emotions. Fear was the principal one. Each time, I paced back to Jonah’s room, my heart would plummet to my stomach if his doctor was in his room. You never know what news a doctor is going to bring. You hope for the best but prepare yourself for the worst. I don’t believe a person can wrap their mind around the intensity of this fear unless they are experiencing it themselves. Your child’s life suspended in a very delicate balance. It hurts every inch of your body to watch the days unfold, not knowing what was in store.
“Jonah had another great night. He tried to escape last night so they had to up his morphine just a bit. I've talked to him about this and he promises not to do it again. He started kicking and moving his arms around and acting like a typical newborn...but he doesn't know any different so the nurses didn't discipline him too much.”
Jonah was thriving and trying to become a ordinary newborn. He made faces that made us believe he wanted to whimper or sometimes, smirk. He would shift his head in our direction when we talked to him, and he was getting stronger each day.
“Today, Jonah is a week old. We are so thankful for him and blessed to have him in our lives. He's getting cuter each day and starting to make more facial expressions. He's responds when I kiss on him (which is alot) and we've noticed he's ticklish in his feet.”
I remember his little legs kicking each time we would pat his feet and it was the sweetest movement. Jason and I would giggle as we tortured him by continuously tickling him.
“His surgeon, Dr. Michi, was in his room this morning when I visited - he smiled and said "You son do good." He is Japanese and we sometimes have a communication gap but he knows the words I need to hear.”
“He's still making his adorable facial expressions but only now, I can't kiss him anymore. They asked me stop doing that. I will listen to them only because it's my sons health.“
Days became more critical for Jonah as we prepared to remove his support. The fear of infections and germs forced him to be put on gown-and-glove isolation. This didn’t stop us from spending time with him but it did limit our contact. We no longer had skin-on-skin contact but glove-on-skin, which did not offer near the bonding experience we both wanted.
“They are lowering his life support and he's responding well to that. While they are lowering it, his body has to start producing everything itself. It's pretty neat to learn all this information. He's on an ECMO machine - an external heart and lungs. He has been on 110 kilos of support. They lowered it to 90 yesterday and then again to 80 last night. A few more days, and we're praying to have him off ECMO completely. Then, they can close his chest up. And that means, one step closer to momma getting to hold him.”
Jonah’s chest was still wide open from his first surgery on day 3. His tiny beating heart was there for us all to see. Only I wasn’t looking. Jason enjoyed the educational process of it all. He soaked in all the information and registered it. He would examine the drawings, look at Jonah’s actual heart and ask questions. I just wanted to hold my baby and I couldn’t.
“The cardiologist is still undecided about the pacemaker. He said sometimes it can take up to 7 days before the heart gets into rhythm again, so we just need to wait and see. He's not calling it just yet. Either way, we can handle a pacemaker.”
At first, I was a little saddened that he might require a pacemaker. Disappointed for about five minutes. In the whole scheme of things, what was the big deal about a pacemaker. Just give me my child and let us go on with our lives; pacemaker and all. Jonah’s life was still critical each day and I was allowed to stay at the hospital 24 hours a day, setting up camp in the waiting room. I couldn’t see life outside the hospital and did not care to venture away from that floor. I didn’t want to miss one second of Jonah’s life. Fear had driven me to become a recluse in a public setting. Anytime I stepped on the elevator, anxiety would completely take over and I could only think of returning to the CVICU. My security was the waiting room and Jonah’s room. I felt calm beside him, knowing he was still alive and with us. I felt peace knowing if something did happen, I would be right beside him through it all, holding his little hand and sneaking in a kiss.
Tuesday, July 24, 2012
July 24, 2009 - Jonah's 5th Day
July 24, 2009
At only 5 days old, Jonah was impacting our lives in a way we could never imagine. We witnessed his struggles and saw his fight. I remember being allowed to do the small things: brush his hair, clean his face, put balm on his lips. When I would rub his tiny, red lips, he would press his little lips together in a small pucker and it was the cutest thing I had ever seen. At 5 days old, I still had not seen Jonah’s eyes. Can you imagine? I still had not held my baby boy. I was only able to touch, kiss and speak to him. There were no diapers to change, no midnight feedings, and no crying. I wanted all those things so desperately.
“Good morning!! And it is GOOD. Jonah had another great night. They were taking him off the sedation just a bit this morning. When I kissed him this morning, he puckered up his little lips for me. I love every little inch of this amazing boy! I had them brush his "teeth" (his gums), making his mouth minty fresh for all the kisses today.”
“He's still going to be on morphine today - and will not feel any pain but they do want him to start moving a little. And he's responding well.”
I loved when Jonah was less sedated. I loved watching him wave his tiny arms in the air, as if he was praising the Lord. He would do what most all newborns did except with more work involved. He would wiggle, he would respond to stimulation and he would stick his tongue out.
“I can't kiss him enough. His swelling is going down and he's starting to look like my baby again. He's also urinating more which means the kidneys are working. His cardiologist is giving us good reports and we're so thrilled about the progress.”
“We've had a rough time and Jason and I both have been on the brink of falling apart but with God's amazing love and Jonah's overwhelming strength, we have been able to pull ourselves back together and sort through all of this.”
With heart defects, you just never know. We went to bed each night, leaving Jonah, not knowing what the next day would hold for him. Or if that day would come at all. I know several nights as Jason and I went to say goodnight, Jason would tell me through tears that he didn’t want it to be the last night. I never did either. We always, always wanted one more night with our perfect little boy.
At only 5 days old, Jonah was impacting our lives in a way we could never imagine. We witnessed his struggles and saw his fight. I remember being allowed to do the small things: brush his hair, clean his face, put balm on his lips. When I would rub his tiny, red lips, he would press his little lips together in a small pucker and it was the cutest thing I had ever seen. At 5 days old, I still had not seen Jonah’s eyes. Can you imagine? I still had not held my baby boy. I was only able to touch, kiss and speak to him. There were no diapers to change, no midnight feedings, and no crying. I wanted all those things so desperately.
“Good morning!! And it is GOOD. Jonah had another great night. They were taking him off the sedation just a bit this morning. When I kissed him this morning, he puckered up his little lips for me. I love every little inch of this amazing boy! I had them brush his "teeth" (his gums), making his mouth minty fresh for all the kisses today.”
“He's still going to be on morphine today - and will not feel any pain but they do want him to start moving a little. And he's responding well.”
I loved when Jonah was less sedated. I loved watching him wave his tiny arms in the air, as if he was praising the Lord. He would do what most all newborns did except with more work involved. He would wiggle, he would respond to stimulation and he would stick his tongue out.
“I can't kiss him enough. His swelling is going down and he's starting to look like my baby again. He's also urinating more which means the kidneys are working. His cardiologist is giving us good reports and we're so thrilled about the progress.”
“We've had a rough time and Jason and I both have been on the brink of falling apart but with God's amazing love and Jonah's overwhelming strength, we have been able to pull ourselves back together and sort through all of this.”
With heart defects, you just never know. We went to bed each night, leaving Jonah, not knowing what the next day would hold for him. Or if that day would come at all. I know several nights as Jason and I went to say goodnight, Jason would tell me through tears that he didn’t want it to be the last night. I never did either. We always, always wanted one more night with our perfect little boy.
Monday, July 23, 2012
July 23, 2009 - Jonah's 4th Day
July 23, 2009. I was sitting at a computer desk in the lobby of Arkansas Children’s Hospital trying to put into words what was wrong with my Jonah.
“God is definitely working here. On Wednesday, Jonah underwent open heart surgery for over 12 hours. I can't even begin to describe what was wrong with his heart but only 1 out of 500 pediatric heart patients have his defect.”
I was new to the world of congenital heart defects, thrown into it, virtually overnight. I didn’t see it as a life sentence, at this point. In my mind, I was believing Jonah would be fixed and we would get beyond this. We would speak about it years later, when we were explaining his scars to him or talking about how complex he was. For me, this was a temporary situation.
“Dr. Michi worked tediously on Jonah and would not leave until he was happy with the job and could consider the surgery a success. Jason and I left the hospital around midnight on Wednesday and the doctor was still with Jonah in his private room. The next morning, I arrived at 5:45, the cardiologist was already back in Jonah's room and the nurse told me that he didn't leave until 2 this previous morning. When the doctor gets less sleep than the mother, you know you are in good hands.”
I thought the world of Dr. Michi. The man is a genius and I said that many times in 2009. I would never be able to thank him enough for all he did for Jonah in those 17 days.
“Jonah was up and down all night. They had problems regulating his blood pressure. Yesterday, they found some clots in the tubing, flushed them out, and his blood pressure regulated.”
To come in and learn that your child fought all night to see the next day and I was not there to hold his hand broke my heart into a million pieces. I was only away from him for 4 hours that night and it was four of the most critical hours. I would never learn the true details of that night until I read his medical records. Chest compressions were performed on Jonah that night. We nearly lost him while we were not there. His team fought to keep him off ECMO through the night.
“Last night, Jonah had an even better night. They have taken him off some blood pressure medication and his blood pressure did not waiver. This boy is stronger than anyone I've ever met. He's a fighter. Today, he's trying to breathe over the ventilator. However, the doctor's don't want him to just yet."
By the time I wrote on this first page in his journal, several days had played out. My son was proving to be a true warrior in these few days. He was showing us what real strength was and still IS.
“I kissed him first thing this morning and his lips quivered. I think he wants to pucker up and kiss me...or lick me. :) I'll take either. His color is improving each day and he has maintained his birth weight - a whopping 9 lbs. 2 oz. The nurses adore him and tell me he's a good baby. He truly is a miracle and a blessing in our lives. He has touched so many people's lives in unimaginable ways and he's only 4 days old.”
I loved the days when I could kiss him, when I could smell him. He had some beautiful full lips. By this time, he was transforming into a miniature version of Elijah. His features were taking shape and I could see his big brother in him. He was much larger than Elijah. 2 pounds and 2 ounces larger. Elijah didn’t weigh 9 lbs until he was 6 weeks old. I remember his tiny hands would wrap around our fingers and hold on tight.
These days I will never forget and never regret. I loved Jonah from day one as much as I love him today.
“God is definitely working here. On Wednesday, Jonah underwent open heart surgery for over 12 hours. I can't even begin to describe what was wrong with his heart but only 1 out of 500 pediatric heart patients have his defect.”
I was new to the world of congenital heart defects, thrown into it, virtually overnight. I didn’t see it as a life sentence, at this point. In my mind, I was believing Jonah would be fixed and we would get beyond this. We would speak about it years later, when we were explaining his scars to him or talking about how complex he was. For me, this was a temporary situation.
“Dr. Michi worked tediously on Jonah and would not leave until he was happy with the job and could consider the surgery a success. Jason and I left the hospital around midnight on Wednesday and the doctor was still with Jonah in his private room. The next morning, I arrived at 5:45, the cardiologist was already back in Jonah's room and the nurse told me that he didn't leave until 2 this previous morning. When the doctor gets less sleep than the mother, you know you are in good hands.”
I thought the world of Dr. Michi. The man is a genius and I said that many times in 2009. I would never be able to thank him enough for all he did for Jonah in those 17 days.
“Jonah was up and down all night. They had problems regulating his blood pressure. Yesterday, they found some clots in the tubing, flushed them out, and his blood pressure regulated.”
To come in and learn that your child fought all night to see the next day and I was not there to hold his hand broke my heart into a million pieces. I was only away from him for 4 hours that night and it was four of the most critical hours. I would never learn the true details of that night until I read his medical records. Chest compressions were performed on Jonah that night. We nearly lost him while we were not there. His team fought to keep him off ECMO through the night.
“Last night, Jonah had an even better night. They have taken him off some blood pressure medication and his blood pressure did not waiver. This boy is stronger than anyone I've ever met. He's a fighter. Today, he's trying to breathe over the ventilator. However, the doctor's don't want him to just yet."
By the time I wrote on this first page in his journal, several days had played out. My son was proving to be a true warrior in these few days. He was showing us what real strength was and still IS.
“I kissed him first thing this morning and his lips quivered. I think he wants to pucker up and kiss me...or lick me. :) I'll take either. His color is improving each day and he has maintained his birth weight - a whopping 9 lbs. 2 oz. The nurses adore him and tell me he's a good baby. He truly is a miracle and a blessing in our lives. He has touched so many people's lives in unimaginable ways and he's only 4 days old.”
I loved the days when I could kiss him, when I could smell him. He had some beautiful full lips. By this time, he was transforming into a miniature version of Elijah. His features were taking shape and I could see his big brother in him. He was much larger than Elijah. 2 pounds and 2 ounces larger. Elijah didn’t weigh 9 lbs until he was 6 weeks old. I remember his tiny hands would wrap around our fingers and hold on tight.
These days I will never forget and never regret. I loved Jonah from day one as much as I love him today.
Wednesday, July 18, 2012
I would call this my "Thank You" speech....
Have you ever considered thanking the people in your life? We are taught to be grateful and thankful for everything. I pray to God every night - I’m so thankful to Him for everything and everyone that’s in my life. But do they know it? Do they know how they’ve affected me? Do they know how they have blessed me? I read the writings on my Facebook wall and I smile. I am blessed with an enormous circle of friends but a blanket THANK YOU just doesn’t seem fair enough. If my family has ever crossed your prayers or thoughts, thank you. I’m not wanting to exclude people but in a quick way - I want to share a few special people in my life and I want you to see how amazing they are and mostly, I want you to see how Jonah has touched my life. Consider for a moment, that most of these people came directly into my life via Jonah or his heart condition. Family and close friends aside, Jonah blessed me with some of the most supportive and loving people that I’m fortunate enough to know. Will you take a moment and read their names and read how they’ve touched me……and if you aren’t mentioned, it doesn’t mean I love you any less….this was just a quick list. (The abbreviated list, if you will.)
@Jessica Fite - I love you and your sweet family. I love that you have your very own Jonah with a heart similar to my Jonah’s. I love that our Jonah’s are close to the same age. I love that you are my friend. All these similarities are truly a work of God. Your Jonah has his very own Jonah angel.
@Brandy Pate - Thank you for being at ACH at the same time. I’ve always talked about little Avery’s cries from next door. It was so sweet and I couldn’t wait to hear Jonah cry. I never had that chance. But I loved watching Avery. I love that she is doing so well. When I met Avery, she had just been placed on the transplant list. Now, she’s been off of it for awhile and doing so well. Praise the Lord!
@Katrina Payton - (You didn’t come into my life via Jonah but you’re here.) Thank you for calling me to help decipher Jonah’s heart problems. Thank you for encouraging me during the worst of times. Thank you for always being there.
@Charley Staggs - You’re just awesome. And Wyatt is, too! Thank you for being one of my most treasured friends brought to me directly from Arkansas Children’s Hospital! (While Wyatt was recovering from his heart transplant, I delivered some things to ACH and met his momma for the first time!) I love you!
@Angie Kattich - Another one that has always been there. But Jonah brought us closer. Thank you for all you’ve ever done for my family, and for just being there when you have enough on your plate as it is.
@Gloria Plymale - My heart breaks for your family. I never sugar-coated grief - it never gets any easier. Thank you for visiting us at ACH, rescuing Elijah w/Heather and taking him to the zoo and for reaching out to me after the tragic death of your niece.
@Shayna Johnson - I love you, girl! You’ve let me vent on you and write page-long messages and you’ve always been encouraging and supportive. You’re awesome!
@Tracy Scott - Thank you for ALWAYS being there. I know we became friends in high school but I can’t remember you not being in my life. I know Jonah’s funeral was tough on you since you lost your dear, sweet Ashley, but thank you for coming to my aid, holding me and letting me cry on your shoulder. I love you for always.
@Leah Helms - Oh, sweet Leah. You’re just a great person. Our little men were in the same rooms (months apart, of course) at ACH and both lost their fight too soon in life. Your strength after losing 2 children is amazing and a true testimony of your FAITH. Thank you for being a pillar of strength….even though the phone lines don’t work too well from Arkansas to Mississippi.
@Kerry Morton - Thank you for being there when I made my first trip back to ACH. At a time, when you needed to be held up, you held me up. I will never forget your sweet, sweet Glory and the amazing love she brought into this world.
@Whitney Tappan - Who doesn’t need to thank Whitney? If you’ve ever had a CHD baby at ACH, you probably know and love Whitney. She’s an amazing nurse in the CVICU that treats every baby with love and tenderness!
@Joey Walker - You’ve always been there when I needed you. You are an amazing mother to Ethan and Jared and a great person to know! I love watching your little CHDer grow and thrive!!
@Kristen Myers - Seems like we’ve been friends for awhile now, but you reached out to me during our stay at ACH and hooked us up with an awesome anesthesiologist. I remember when your friend stepped up to be Jonah’s doctor, his previous anesthesiologist was (sarcastically) offended. We had them fighting over my sweet baby. Thank you always.
@Joy Clark - For always reassuring that my grieving process is normal. Showing me that 17 years later, it’s still going to be painful and it’s still going to hurt. And this is one wound time will not heal.
@Bo Crowley - Just thank you! I love you. We were pregnant at the same time, and we were miserable together. I really had Kelsey picked out as Jonah’s future wife. (I’m sorry that Kelsey’s going to be missing out on being a Cox.) I love watching her grow - and I just wish she liked me more. J She’s beautiful and it’s a joy to see her knowing she’s just a few weeks older than Jonah.
@Sabra Odom (and Jon, but he chooses not to have FB but will read this) - Thank you for being amazing cousins. I know I never tell you that but I appreciate you coming to my aid during football right after Jonah passed away. It was so hard for me to face people but I didn’t want to deprive Elijah of football. I wanted Elijah’s life to be normal and you helped with that process. I love you guys. Especially, Sabra thanks for listening to me on those long phone conversations!
@Marcia Fletcher - THANK YOU! I remember stepping off the elevator at ACH and just hugging you. Thank you for coming to the aid of a mommy in need when you didn’t even know me. You reached out to a stranger and helped me so much. You guided me through my hospital stay and helped me deal with that one bad nurse. I love you, girl!
@Allie Bestwick - Aah, Allie! I love you! Thank you for your messages, thank you for allowing me to vent and thank you for being my friend always! Happy Anniversary!!
@Pastor Larry, Amanda and all of Grandview Church - Thank you for always being there for us. When Jonah passed away and we were heading back from Little Rock, Jason and I were discussing funeral plans with no idea where to start. Jason said he wanted to have the service at Grandview - he always felt that was home. I said Larry Shankle is the pastor there now. (I think Pastor Larry had been on the job a month and Jason & Larry had known each other since high school or maybe longer?) Jason said I couldn’t imagine anyone else doing Jonah’s service. It just seemed to be a God-given situation. The church put on a wonderful dinner for my large family. They were warm, generous and my family was so grateful for all they did on such a short notice.
Oh, gosh….our families….never would I forget you. A list of the visitors (and a few extras.) Jonah’s family - they loved him the most. They showed him love each day as they visited him, prayed over him, touched him and kissed him. He felt your love and he knew you.
Frank & Virginia Hayes, Tony & Dorothy Cox, Rob, Sarah, Makayla & Peyton Hayes, Stephen, Artricia & Logan Cox, Eric & Gennell Hutsell, Jim & Jeanie Grooms, Jocko, Sheri & Hayes Grooms, Sam, Mandy, Preston, & Reagon Kelso, Halie Grooms, Carl, Heather & Payton Cole, Jim McIlvain, Darren, Tammi, Zach and Luke Haley, David & Diane Lumpkin, Jason & Traci Lumpkin, Brandon & Lesli Lumpkin, Carolyn Duke, Nikki Pitts, and Harry & Lana Stephens.
I always say goodbye’s are never easy but they aren’t permanent either. We will be reunited with Jonah someday, in perfect health. But for now, he’s enjoying the best company that I know of our Father, and his grandparents and his aunt and uncle that have gone before us. As I count my blessings, I wonder who is more blessed me or Jonah.
We know the obvious answer.
Jonah’s 3rd birthday. July 19, 2009.
Ready or not, we’re going back in time.
I love you all!
Tuesday, July 3, 2012
In God's Time.....
Three years ago.
July 20, 2009.
The day that God showed Jason all the potentially-adoptable babies in the NICU at ACH.
A few days later, as we were riding the elevator at Arkansas Children’s Hospital, Jason told me what he had witnessed in the NICU with a tear in his eye.
“They had no parents to hold them, Wendy.” I remember him saying.
The seed was planted that day, July 22nd.
The few nights that Jason and I were alone in the waiting room during those emotional 17 days, we talked and prayed about Jonah, our beautiful baby fighting for his life. And our conversation would always drift to the children in the NICU, one floor down, with no one to love them, no one to hold them. Statistically, about 30% of them were going into state care.
“Do you want to adopt, Jason?”
“With or without Jonah, yes. But one thing at a time.” (Please understand that Jason’s faith was always deeper than mine. He was always closer to God. I admit that freely. I never accepted Jonah’s trip to Heaven until the last night in his room.)
Now, my point, in God’s time. Almost three years to the date that it was placed in our hearts to adopt, we are about to realize that dream of inviting a new child into our home. I sit at the calendar and realize that we are no longer months away from opening. We are weeks away. Three weeks at the most. I realize then that our original date or potentially Jonah’s birthday could coincide with the new children arriving. We have no idea of the time or the date…only He does. I do know that I don’t believe in coincidence. I know everything happens for a reason. This time of year that once brought us much sadness and despair is going to breathe new life into Jason and myself, and bring a new joy into our lives, our home and Elijah’s life.
With a part of our heart missing, deep sadness, and tears in our eyes, we are ready for the next part of our lives. We are ready to start completing our family again.
Love & Prayers,
Wendy
HAPPY BIRTHDAY MONTH TO GLORY MORTON!
https://www.facebook.com/#!/pages/Fight-Like-a-Glory-Girl/206393402710266
Jump over to her Facebook page and send her parents some love. Glory had a smile that could light up a room. I will never forget standing over her bed for my first trip back to ACH. I was a wreck. Glory smiled and stuck her sweet little tongue out. That smile and that little tongue brought a smile to my face when I needed it most.
July 20, 2009.
The day that God showed Jason all the potentially-adoptable babies in the NICU at ACH.
A few days later, as we were riding the elevator at Arkansas Children’s Hospital, Jason told me what he had witnessed in the NICU with a tear in his eye.
“They had no parents to hold them, Wendy.” I remember him saying.
The seed was planted that day, July 22nd.
The few nights that Jason and I were alone in the waiting room during those emotional 17 days, we talked and prayed about Jonah, our beautiful baby fighting for his life. And our conversation would always drift to the children in the NICU, one floor down, with no one to love them, no one to hold them. Statistically, about 30% of them were going into state care.
“Do you want to adopt, Jason?”
“With or without Jonah, yes. But one thing at a time.” (Please understand that Jason’s faith was always deeper than mine. He was always closer to God. I admit that freely. I never accepted Jonah’s trip to Heaven until the last night in his room.)
Now, my point, in God’s time. Almost three years to the date that it was placed in our hearts to adopt, we are about to realize that dream of inviting a new child into our home. I sit at the calendar and realize that we are no longer months away from opening. We are weeks away. Three weeks at the most. I realize then that our original date or potentially Jonah’s birthday could coincide with the new children arriving. We have no idea of the time or the date…only He does. I do know that I don’t believe in coincidence. I know everything happens for a reason. This time of year that once brought us much sadness and despair is going to breathe new life into Jason and myself, and bring a new joy into our lives, our home and Elijah’s life.
With a part of our heart missing, deep sadness, and tears in our eyes, we are ready for the next part of our lives. We are ready to start completing our family again.
Love & Prayers,
Wendy
HAPPY BIRTHDAY MONTH TO GLORY MORTON!
https://www.facebook.com/#!/pages/Fight-Like-a-Glory-Girl/206393402710266
Jump over to her Facebook page and send her parents some love. Glory had a smile that could light up a room. I will never forget standing over her bed for my first trip back to ACH. I was a wreck. Glory smiled and stuck her sweet little tongue out. That smile and that little tongue brought a smile to my face when I needed it most.
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