Three Steps Forward and a Couple Steps Back
Yesterday morning I walked in and saw that Joey was very fidgety and his heart rate had climbed almost to the 200s. I had never seen him like this, but the nurse assured me that these were withdrawal symptoms. After giving him additional medication to calm him down, he still did not settle. Molly, his nurse practitioner, established that his nose was experiencing break down from the cpap prongs and wanted to rotate him out on high flow vapotherm. This is the step down from the cpap. Daniel and I were extremely nervous about this transition, because our boy is a slow and steady mover. On the aesthetics side of it, vapotherm also means that he would not have to wear the hat that covers his beautiful hair or the mask that takes up half of his face. It's a simple nasal canula with a lot of oxygen and pressure flowing through to his nostrils. I wish I had a video of the initial transition, because it was almost kind of funny. I think JoJo was just a little shocked by what was going on. Once he figured it out, Joey did shockingly well. This kid's resilience continues to surprise me. In addition, his agitation also subsided, so we were happy. We think the morning agitation was not just due to withdrawals, but due to the breakdown in the nose, so we were pleased that the transition from cpap to vapotherm were helping the agitation.
Daniel also got to come home for the second time and sleep in his own bed since Joey's heart surgery. He has been sleeping at the hospital for three weeks, and it was actually really nice sitting on the couch as a family again, even if it was for just a few minutes before going to bed. Of course, the one night he decides to come home, Joey's blood pressure dipped extremely low overnight. The doctors think that it could be the lisinopril that Joey was just given. This drug treats his high blood pressure (this was the first time he was given this medicine), and combined with his clonodine, which is the anti-anxiety drug given to him to help him with his withdrawal symptoms, it could have caused his low blood pressure. (Clonodine also lowers blood pressure) They also took some cultures to rule out a blood infection or sepsis. I have to admit, the sepsis part makes me extremely nervous, but I'm not going to dwell on that. It does take a few days to get the results back, but they have already started to treat him with antibiotics just to be precautionary.
Being in the NICU can definitely be the source of a lot of high anxiety. I'm hyper-focused on addressing my ability to navigate through these emotions and essentially relying on a lot of prayer and trying to spend time in God's word and reassurance. I have been reading another Max Lucado book-Unshakable Hope, where Max Lucado describes a football game that he watched and his emotional experience throughout the process:
"Between now and the final whistle, you have reason to be anxious. You are going to fumble the ball. The devil will seem to gain the upper hand. Some demon will intercept your dreams and destiny. All that is good will appear to lose, but you do not need to worry. You and I know the final score. The God who brings peace will soon defeat Satan and give you power over him." (Romans 16:20)
Satan will not linger long where God is praised and prayers are offered.
I've also been looking back at how far God has brought us and Joey. It is a true testament to who God is and how faithful He is to us. It's not to say that bad things can't happen to us, but that God is in control and holds us tightly through the storm. More times than not, I have had a little more peace when things go awry and we take a few steps back. I'm learning or at least attempting to put the uncontrollable situations into God's hands and just to have confidence in Him. Easier said than done, but hey, I'm working on it. I keep looking back at the God winks I've been given and I also take comfort in that. The other day I asked God to help me find a local business that would provide discounted massages for some of my mom friends that have been at the hospital long term with their kids-I was specific in asking for that discount at the Woodhouse Day Spa that's so close to Vanderbilt. I prayed this prayer not really expecting much, because it was pretty non-trivial like a massage, but the next morning I received a reply back from the owner that she was happy to give me 3 free massages to these moms. I asked God for something, not thinking much of it, and He gave me more than I expected. Free is better than a discount! I've had so many Godwinks along the way that give me hope and confidence that God is in this.
I'm going to repeat this line again that I've already written, because I think repetitiveness and meditating on God's promise is key to that "unshakable hope" that we all aspire to have.
You and I know the final score. The God who brings peace will soon defeat Satan and give you power over him." (Romans 16:20)
Satan will not linger long where God is praised and prayers are offered.
Daniel also got to come home for the second time and sleep in his own bed since Joey's heart surgery. He has been sleeping at the hospital for three weeks, and it was actually really nice sitting on the couch as a family again, even if it was for just a few minutes before going to bed. Of course, the one night he decides to come home, Joey's blood pressure dipped extremely low overnight. The doctors think that it could be the lisinopril that Joey was just given. This drug treats his high blood pressure (this was the first time he was given this medicine), and combined with his clonodine, which is the anti-anxiety drug given to him to help him with his withdrawal symptoms, it could have caused his low blood pressure. (Clonodine also lowers blood pressure) They also took some cultures to rule out a blood infection or sepsis. I have to admit, the sepsis part makes me extremely nervous, but I'm not going to dwell on that. It does take a few days to get the results back, but they have already started to treat him with antibiotics just to be precautionary.
Being in the NICU can definitely be the source of a lot of high anxiety. I'm hyper-focused on addressing my ability to navigate through these emotions and essentially relying on a lot of prayer and trying to spend time in God's word and reassurance. I have been reading another Max Lucado book-Unshakable Hope, where Max Lucado describes a football game that he watched and his emotional experience throughout the process:
"Between now and the final whistle, you have reason to be anxious. You are going to fumble the ball. The devil will seem to gain the upper hand. Some demon will intercept your dreams and destiny. All that is good will appear to lose, but you do not need to worry. You and I know the final score. The God who brings peace will soon defeat Satan and give you power over him." (Romans 16:20)
Satan will not linger long where God is praised and prayers are offered.
I've also been looking back at how far God has brought us and Joey. It is a true testament to who God is and how faithful He is to us. It's not to say that bad things can't happen to us, but that God is in control and holds us tightly through the storm. More times than not, I have had a little more peace when things go awry and we take a few steps back. I'm learning or at least attempting to put the uncontrollable situations into God's hands and just to have confidence in Him. Easier said than done, but hey, I'm working on it. I keep looking back at the God winks I've been given and I also take comfort in that. The other day I asked God to help me find a local business that would provide discounted massages for some of my mom friends that have been at the hospital long term with their kids-I was specific in asking for that discount at the Woodhouse Day Spa that's so close to Vanderbilt. I prayed this prayer not really expecting much, because it was pretty non-trivial like a massage, but the next morning I received a reply back from the owner that she was happy to give me 3 free massages to these moms. I asked God for something, not thinking much of it, and He gave me more than I expected. Free is better than a discount! I've had so many Godwinks along the way that give me hope and confidence that God is in this.
I'm going to repeat this line again that I've already written, because I think repetitiveness and meditating on God's promise is key to that "unshakable hope" that we all aspire to have.
You and I know the final score. The God who brings peace will soon defeat Satan and give you power over him." (Romans 16:20)
Satan will not linger long where God is praised and prayers are offered.
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