Here we go again!
Next Wednesday, September 7th, Devin will be 5 months old! It will also be the day we take him back to the hospital for Pre-op for his next open heart surgery, the Glenn. His surgery is scheduled for the 8th. We knew this day was coming, and in many ways have been looking forward to moving on to the next phase of his life. We have been living in what is called “Interstage”, which is the time between his first two open heart surgeries. The Interstage period between these two surgeries is critical for several reasons. Praise God we have made it to this point without any sickness, or having to be readmitted to the hospital for other reasons! Interstage has required a LOT of intentional time and effort to help him grow, and keep him as healthy as possible.
I know Devin has been home with us now for 3 months, but thinking about his last surgeries, and hospital stays still feel very fresh. After being at the hospital so long, we have developed a comfort and trust with the staff at Children’s. If you can love a hospital, we LOVE our hospital and are so grateful Devin has been there through all of this. At the same time, it feels very different handing him over for open heart surgery again. We know this has to happen to keep him alive, but this time he feels more like “ours”. Since he’s been home, and a part of the family and daily routine...who are we kidding he IS the routine. It will be very difficult to see our sweet, smiley little boy all stitched up, and hooked to wires and tubes again. The hospital stay should not be as long as last time, pending no complications.
Please also be praying about his oral feeding. About a month and a half ago he quit taking a bottle or his pacifier. He has oral aversion because his acid reflux is so bad, which in turn causes him to throw up a lot. As a result he associates anything in his mouth with throwing up. It makes us pretty sad to see him regress so much when he use to do fairly well at taking a bottle. Please pray that he would start taking his paci again. In the hospital we will be restricted from holding him, and I would love for him to take paci again for comfort, and to work on his sucking skills. Until he learns to do that, he will continue to have his feeding tube, which just irritates his throat causing him to gag and throw up more.
So, a question we get a lot is “what are they doing during this next surgery?” During this operation, the shunt placed during the prior Norwood procedure is removed, and the superior vena cava (the large vein that brings oxygen-poor blood from the head and arms back to the heart) is connected to the right pulmonary artery. Blood from the head and arms passively flows into the pulmonary artery and proceeds to the lungs to receive oxygen. However, oxygen-poor (blue) blood returning to the heart from the lower body through the inferior vena cava will still mix with oxygen-rich (red) blood in the left heart and travel to the body, so Devin could still tend to be blueish. This operation helps create some of the connections necessary for the final operation, the Fontan procedure. Because of all the “rewiring” most babies will have severe headaches following the Glenn for several weeks. Given the nature of where the phrenic nerve lie and the vocal chords, there is still always a risk of his vocal chords, and diaphragm being affected again. Please pray for his overall surgery. That the Lord would once again use the gifts he's given to the surgeon, and team to help Devin's heart function even better than hoped, and please also that he would be spared from any additional issues that would result in more surgeries or problems.
We just love this little guy so, so much. He’s totally rocked our world, and flipped it on its head; but he brings so much joy to us each day. His 3 big brothers are smitten with him, and help out as much as they can. Please be praying for them as we will have our hands very full again when we bring Devin home. We don’t want them to feel like we aren’t paying attention to them, or don’t care about them as much because we are constantly attending to Devin.
We are so blessed to know so many people are praying for Devin & our family as we go through all of this. It has not been easy. There are times before Devin was born that I asked the Lord for a ”normal” baby, and I think what I was asking for was “easy” and trial free. I wouldn’t wish what we’ve gone through on anyone, but now I wouldn’t trade it for anything. We have witnessed God’s goodness and provision as we’ve walked this road. We have seen ultrasounds of an unknown baby with multiple chromosomal problem markers; dwindle down to a baby who only has a broken heart, not that anyone would ever know just by looking at his giggly self. We have felt the Lord’s nearness as we handed our baby over to surgeons to cause temporary pain, for a chance at a full life, no matter how long that life may be. We have grown closer together as a family, and are able to teach our boys more tangibly what really matters in life…something we are all still working on.
We will keep you updated as much as we can through the next few weeks! Thank you again for the amazing outpouring of love and support through all of this!
I know Devin has been home with us now for 3 months, but thinking about his last surgeries, and hospital stays still feel very fresh. After being at the hospital so long, we have developed a comfort and trust with the staff at Children’s. If you can love a hospital, we LOVE our hospital and are so grateful Devin has been there through all of this. At the same time, it feels very different handing him over for open heart surgery again. We know this has to happen to keep him alive, but this time he feels more like “ours”. Since he’s been home, and a part of the family and daily routine...who are we kidding he IS the routine. It will be very difficult to see our sweet, smiley little boy all stitched up, and hooked to wires and tubes again. The hospital stay should not be as long as last time, pending no complications.
Please also be praying about his oral feeding. About a month and a half ago he quit taking a bottle or his pacifier. He has oral aversion because his acid reflux is so bad, which in turn causes him to throw up a lot. As a result he associates anything in his mouth with throwing up. It makes us pretty sad to see him regress so much when he use to do fairly well at taking a bottle. Please pray that he would start taking his paci again. In the hospital we will be restricted from holding him, and I would love for him to take paci again for comfort, and to work on his sucking skills. Until he learns to do that, he will continue to have his feeding tube, which just irritates his throat causing him to gag and throw up more.
So, a question we get a lot is “what are they doing during this next surgery?” During this operation, the shunt placed during the prior Norwood procedure is removed, and the superior vena cava (the large vein that brings oxygen-poor blood from the head and arms back to the heart) is connected to the right pulmonary artery. Blood from the head and arms passively flows into the pulmonary artery and proceeds to the lungs to receive oxygen. However, oxygen-poor (blue) blood returning to the heart from the lower body through the inferior vena cava will still mix with oxygen-rich (red) blood in the left heart and travel to the body, so Devin could still tend to be blueish. This operation helps create some of the connections necessary for the final operation, the Fontan procedure. Because of all the “rewiring” most babies will have severe headaches following the Glenn for several weeks. Given the nature of where the phrenic nerve lie and the vocal chords, there is still always a risk of his vocal chords, and diaphragm being affected again. Please pray for his overall surgery. That the Lord would once again use the gifts he's given to the surgeon, and team to help Devin's heart function even better than hoped, and please also that he would be spared from any additional issues that would result in more surgeries or problems.
We just love this little guy so, so much. He’s totally rocked our world, and flipped it on its head; but he brings so much joy to us each day. His 3 big brothers are smitten with him, and help out as much as they can. Please be praying for them as we will have our hands very full again when we bring Devin home. We don’t want them to feel like we aren’t paying attention to them, or don’t care about them as much because we are constantly attending to Devin.
We are so blessed to know so many people are praying for Devin & our family as we go through all of this. It has not been easy. There are times before Devin was born that I asked the Lord for a ”normal” baby, and I think what I was asking for was “easy” and trial free. I wouldn’t wish what we’ve gone through on anyone, but now I wouldn’t trade it for anything. We have witnessed God’s goodness and provision as we’ve walked this road. We have seen ultrasounds of an unknown baby with multiple chromosomal problem markers; dwindle down to a baby who only has a broken heart, not that anyone would ever know just by looking at his giggly self. We have felt the Lord’s nearness as we handed our baby over to surgeons to cause temporary pain, for a chance at a full life, no matter how long that life may be. We have grown closer together as a family, and are able to teach our boys more tangibly what really matters in life…something we are all still working on.
We will keep you updated as much as we can through the next few weeks! Thank you again for the amazing outpouring of love and support through all of this!
Comments
Post a Comment