Devin is 5 Weeks!
Today Devin is 5 weeks old. Time feels like it has both blown by, yet also feels like it’s stood still as we reflect on these past 5 weeks and all they have encompassed.
I don’t quite know where to start in writing this blog. A lot of nothing has happened these past few weeks. And while that is good on the one hand; it’s also disheartening to us on the other. Two weeks ago they realized Devin’s left diaphragm had become paralyzed as a result of the open heart surgery, which is not uncommon since the nerve controlling the diaphragm runs between the heart and lung. As a result of the surgery he also had some vocal chord paralysis, which is also common following this type of surgery. So, at that time there was talk of an additional surgery for his diaphragm to help tack it down to allow his lungs more room expand while breathing. Through much deliberation, from many, many intelligent minds; they decided to hold off on the surgery, and just allow Devin to grow for a while to see if it might heal on its own with time.
Before there is any talk of Devin coming home, he needs to be off of the breathing support, but for the time being he needs the support for his lungs as they heal. The doctors have decided not to lower his breathing support until he gains weight, also giving his diaphragm time to heal. Gaining weight for heart babies is typically slower than healthy newborns, so Devn’s trend of late seems to be up in weight one day, then down the next. He’s only being fed through a feeding tube, because he is unable to take a bottle until his vocal chords heal and the breathing support can be lowered. We won’t know if the surgery is completely off the table until Devin gains a significant amount of weight and they can lower his breathing support, to see if his lungs can handle breathing on their own. It’s a bit of a waiting game now with so many dependencies.
Before Devin was born, we were told we could be in the hospital for months. And with this slow progression, that seems to be likely at this point. He made so much progress in the first few weeks, and did very well with each of his 3 surgeries. We hoped that trend would continue and by this point would have a timeline of when we would be heading home, but such has not been the case as we continue to wait.
We know that the Lord has been abundantly faithful to us through all of this, and Devin’s outcome could have been completely different. So here we are at week 5 grateful in so many ways, but also weary. The hospital staff has been amazing, but this is not home. We are grateful to be close to Devin, but that means we are away from our other 3 boys. And this week we are all feeling it all the more. The boys seem to be wearing it more, and just want baby Devin to come home so we can all be together. Dan & I feel like we’ve lived more at the hospital than we’ve lived in our new house. Dan’s family has been amazing in taking care of the boys, and we could not have done this without them, but we are ready to go home and be mommy & daddy again.
So, we ask for your continued prayers through this. Healing for Devin’s lungs, vocal chords, diaphragm, and a significant gain in weight. Prayers for our other 3 little guys that the Lord would comfort their hearts, and ours while we are apart. Prayers for sustaining strength for Dan & I, and Dan’s family as we go forward with the following weeks or months here. Devin is worth every minute of this journey, and looking at him you’d never think there was so much wrong inside of him. He’s such a fighter, and we know the Lord will get him and all of us through this. Some days it’s just harder to see over the horizon than others. So we cling to the Hope that is ours in Christ Jesus!
I don’t quite know where to start in writing this blog. A lot of nothing has happened these past few weeks. And while that is good on the one hand; it’s also disheartening to us on the other. Two weeks ago they realized Devin’s left diaphragm had become paralyzed as a result of the open heart surgery, which is not uncommon since the nerve controlling the diaphragm runs between the heart and lung. As a result of the surgery he also had some vocal chord paralysis, which is also common following this type of surgery. So, at that time there was talk of an additional surgery for his diaphragm to help tack it down to allow his lungs more room expand while breathing. Through much deliberation, from many, many intelligent minds; they decided to hold off on the surgery, and just allow Devin to grow for a while to see if it might heal on its own with time.
Before there is any talk of Devin coming home, he needs to be off of the breathing support, but for the time being he needs the support for his lungs as they heal. The doctors have decided not to lower his breathing support until he gains weight, also giving his diaphragm time to heal. Gaining weight for heart babies is typically slower than healthy newborns, so Devn’s trend of late seems to be up in weight one day, then down the next. He’s only being fed through a feeding tube, because he is unable to take a bottle until his vocal chords heal and the breathing support can be lowered. We won’t know if the surgery is completely off the table until Devin gains a significant amount of weight and they can lower his breathing support, to see if his lungs can handle breathing on their own. It’s a bit of a waiting game now with so many dependencies.
Before Devin was born, we were told we could be in the hospital for months. And with this slow progression, that seems to be likely at this point. He made so much progress in the first few weeks, and did very well with each of his 3 surgeries. We hoped that trend would continue and by this point would have a timeline of when we would be heading home, but such has not been the case as we continue to wait.
We know that the Lord has been abundantly faithful to us through all of this, and Devin’s outcome could have been completely different. So here we are at week 5 grateful in so many ways, but also weary. The hospital staff has been amazing, but this is not home. We are grateful to be close to Devin, but that means we are away from our other 3 boys. And this week we are all feeling it all the more. The boys seem to be wearing it more, and just want baby Devin to come home so we can all be together. Dan & I feel like we’ve lived more at the hospital than we’ve lived in our new house. Dan’s family has been amazing in taking care of the boys, and we could not have done this without them, but we are ready to go home and be mommy & daddy again.
So, we ask for your continued prayers through this. Healing for Devin’s lungs, vocal chords, diaphragm, and a significant gain in weight. Prayers for our other 3 little guys that the Lord would comfort their hearts, and ours while we are apart. Prayers for sustaining strength for Dan & I, and Dan’s family as we go forward with the following weeks or months here. Devin is worth every minute of this journey, and looking at him you’d never think there was so much wrong inside of him. He’s such a fighter, and we know the Lord will get him and all of us through this. Some days it’s just harder to see over the horizon than others. So we cling to the Hope that is ours in Christ Jesus!
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