Thursday, Nov. 3 & Friday, Nov. 4 Appointments
On Thursday we had our appointment with the pediatric nephrologist. On Friday morning Malachi had his 3 year old well child exam and then we had another appointment with Dr. Moore in the afternoon. Rachel has so generously donated her time and energy to taking care of our kids during all of the appointments. The kids just love it when she comes over. Mikayla always has a countdown of the number of hours before her "good friend Rachel" comes and Malachi calls her his "Grandma" :).
The nephrology appointment was both encouraging and overwhelming. It was nice to touch base with Dr. Benador and learn more about what to expect with a baby on dialysis. Nicole is familiar with the adult world of continuous dialysis but pediatrics is a another ballgame. It was good to hear that our plan of care this far also aligns with what she would also suggest as far as getting the baby as old as possible before delivering and not worrying about if this is affecting the kidney function any more. She said it wouldn't matter because the damage that is done to the kidneys is done from the very start of this happening. She also agreed that we won't know what the kidney function is until after the baby is born and, of course, most importantly we need lung function. Overall it comes down to that if the baby is able to make it to the point of needing dialysis it will be a very long and hard road for all involved but it is doable. She also said though that after asking many of her patients and their families if they would choose to do it again they have all said "Yes, it absolutely has been worth it". That statement, which was repeated a few times during the conversation, is why it was both encouraging and overwhelming and has caused our already emotional roller coaster to speed up a little more the past couple of days and for us to have more sleepless hours at night. We've known this all along but as delivery time gets closer so does reality that either outcome for our precious little one will be a hard and difficult road. Just as we were about to a breaking point we were encouraged by some of God's perfect timing of a very much needed devotional, inspirational bible reading, and family and friends encouraging words we received through texts and cards that hit our struggles right on. So again, thank you all for your unending love, support, and prayers. They are so powerful and meaningful- truly making a difference in this unexpected journey we are walking.
Our appointment with Dr. Moore involved a few more changes in our plans. The baby's lungs and heart are getting more squished every week and have a lot of pressure on them now which is becoming more and more concerning. Because of this we are having to decide where we will be delivering at. UCSD does not do ECMO (a machine that would essentially take the blood out of the body to do the work of what the lungs normally would do and then put the blood back into the body, somewhat similar to a what a bypass machine is like) and there is a small chance that we may need extreme measures such as that. If the baby is too unstable to transfer to the children's hospital that does this and the other surgeries needed then we will be in a very difficult spot. Because of this we are going to meet with a pediatric urologist from the children't hospital here in the next couple weeks to see what his thoughts are on our situation and then do a "huddle" in which we meet with all the specialists involved in our care to determine what is best for both Nicole and the baby. The fluid is also getting so great that the plan will now be to have Nicole prepped and ready for the c-section and then drain some of the fluid from the abdomen while the baby is still in the womb right before delivery. There of course is always risks for this which is why they would be ready to get the baby out as quickly as possible if needed. The hope for this would be to hopefully allow the lungs to expand better immediately after the baby is delivered and secondarily help with the c-section itself to not be so in depth for Nicole if the baby's abdomen isn't as big. We will also be getting admitted to the hospital on Nov. 21 to get the steroid shots rather then waiting. The steroid shots are proven to be more effective if done before 36 weeks and 6 days so rather then waiting we are going to do them earlier. It will also be good to have it done in the event that the baby becomes distressed and we need to deliver earlier then our 39 week date which is becoming more of a possibility with the amount of pressure on the chest now.
We have had an increase in anxiety, worry, and pain among many other feelings and emotions as the time for delivery has gotten closer. As hard as it is not knowing what the outcome will be it's becoming even more difficult knowing we are that much closer to having to make more really tough decisions and possibly may have to say good-bye to a child that we love and cherish so much already. Yet we would have it no other way and are so grateful that we have been able to carry the baby this far. We pray for strength and continued wisdom for us and the doctors during this time. We also continue to pray for a miracle that Baby Wilde will be able to sustain life with the little lung function we do have and that we can recognize if the baby is going into distress before it's too late. We have been shown God's love and greatness many times during our days and weeks and know that He is fully in control. No matter what the outcome is our precious loved one is in the best hands, even though at times it is so difficult to accept it may not go the way we want. We are reminded to have faith like a child through our other children. One day when Mikayla was talking about it she said with such a peaceful and innocent heart, "It's all going to be okay mommy. If Jesus chooses to have the baby go to heaven He will take really good care of him/her. If not then we get to take care of him/her here on Earth". We will continue to lay down our feelings and emotions at the feet of one who created each and every one of us and who continues to give us that underlying peace and indescribable joy when we least expect it during this time.
With love,
Jeff & Nicole
The Lord gives strength to his people; the Lord blesses his people with peace. ~Psalm 29:11
The nephrology appointment was both encouraging and overwhelming. It was nice to touch base with Dr. Benador and learn more about what to expect with a baby on dialysis. Nicole is familiar with the adult world of continuous dialysis but pediatrics is a another ballgame. It was good to hear that our plan of care this far also aligns with what she would also suggest as far as getting the baby as old as possible before delivering and not worrying about if this is affecting the kidney function any more. She said it wouldn't matter because the damage that is done to the kidneys is done from the very start of this happening. She also agreed that we won't know what the kidney function is until after the baby is born and, of course, most importantly we need lung function. Overall it comes down to that if the baby is able to make it to the point of needing dialysis it will be a very long and hard road for all involved but it is doable. She also said though that after asking many of her patients and their families if they would choose to do it again they have all said "Yes, it absolutely has been worth it". That statement, which was repeated a few times during the conversation, is why it was both encouraging and overwhelming and has caused our already emotional roller coaster to speed up a little more the past couple of days and for us to have more sleepless hours at night. We've known this all along but as delivery time gets closer so does reality that either outcome for our precious little one will be a hard and difficult road. Just as we were about to a breaking point we were encouraged by some of God's perfect timing of a very much needed devotional, inspirational bible reading, and family and friends encouraging words we received through texts and cards that hit our struggles right on. So again, thank you all for your unending love, support, and prayers. They are so powerful and meaningful- truly making a difference in this unexpected journey we are walking.
Our appointment with Dr. Moore involved a few more changes in our plans. The baby's lungs and heart are getting more squished every week and have a lot of pressure on them now which is becoming more and more concerning. Because of this we are having to decide where we will be delivering at. UCSD does not do ECMO (a machine that would essentially take the blood out of the body to do the work of what the lungs normally would do and then put the blood back into the body, somewhat similar to a what a bypass machine is like) and there is a small chance that we may need extreme measures such as that. If the baby is too unstable to transfer to the children's hospital that does this and the other surgeries needed then we will be in a very difficult spot. Because of this we are going to meet with a pediatric urologist from the children't hospital here in the next couple weeks to see what his thoughts are on our situation and then do a "huddle" in which we meet with all the specialists involved in our care to determine what is best for both Nicole and the baby. The fluid is also getting so great that the plan will now be to have Nicole prepped and ready for the c-section and then drain some of the fluid from the abdomen while the baby is still in the womb right before delivery. There of course is always risks for this which is why they would be ready to get the baby out as quickly as possible if needed. The hope for this would be to hopefully allow the lungs to expand better immediately after the baby is delivered and secondarily help with the c-section itself to not be so in depth for Nicole if the baby's abdomen isn't as big. We will also be getting admitted to the hospital on Nov. 21 to get the steroid shots rather then waiting. The steroid shots are proven to be more effective if done before 36 weeks and 6 days so rather then waiting we are going to do them earlier. It will also be good to have it done in the event that the baby becomes distressed and we need to deliver earlier then our 39 week date which is becoming more of a possibility with the amount of pressure on the chest now.
We have had an increase in anxiety, worry, and pain among many other feelings and emotions as the time for delivery has gotten closer. As hard as it is not knowing what the outcome will be it's becoming even more difficult knowing we are that much closer to having to make more really tough decisions and possibly may have to say good-bye to a child that we love and cherish so much already. Yet we would have it no other way and are so grateful that we have been able to carry the baby this far. We pray for strength and continued wisdom for us and the doctors during this time. We also continue to pray for a miracle that Baby Wilde will be able to sustain life with the little lung function we do have and that we can recognize if the baby is going into distress before it's too late. We have been shown God's love and greatness many times during our days and weeks and know that He is fully in control. No matter what the outcome is our precious loved one is in the best hands, even though at times it is so difficult to accept it may not go the way we want. We are reminded to have faith like a child through our other children. One day when Mikayla was talking about it she said with such a peaceful and innocent heart, "It's all going to be okay mommy. If Jesus chooses to have the baby go to heaven He will take really good care of him/her. If not then we get to take care of him/her here on Earth". We will continue to lay down our feelings and emotions at the feet of one who created each and every one of us and who continues to give us that underlying peace and indescribable joy when we least expect it during this time.
With love,
Jeff & Nicole
The Lord gives strength to his people; the Lord blesses his people with peace. ~Psalm 29:11
Comments
Post a Comment