~Fall 2011~
Because so many people are praying and others are asking and would like to know how to pray and because at this point we are not sure who knows our situation and who does not, we decided we would copy & paste our last update which we sent to our church family and a few others into a note everyone can read and know what is going on with Noelle. We appreciate all the love, support, and prayers from everyone. Thank you for caring for us and praying for God's will to be done and Him to be glorified through this. As a precursor to the information below as well, while we definitely need a level of sensitivity, please do not shy away from still sharing your good news with us about your children--especially new & current pregnancies and new births. We do not envy you. We love our little Noelle deeply and while we ache to hold her and watch her grow, she is our gift from God whether here or in heaven, and we would not trade her for the world.
(I apologize for any parts that are repeated. We tried to simplify this as much as possible and copy and paste things together so we did not have to retype the entire thing).
We went in for our ultrasound at 18 1/2 weeks (I'm now 24 weeks) and started learning that things weren't quite right with our little girl, Noelle Christine. We were scheduled for a more detailed ultrasound with a high risk specialist the following week and learned that they thought Noelle had a condition called Triploidy...meaning she had another entire set of 23 chromosomes, and this is a fatal condition. We eventually decided to proceed with the amniocentesis to confirm the diagnosis (very long story why we chose to do it, but the end result is that in our situation it would hopefully provide better care and less trauma for both myself and Noelle upon delivery). We finally got the results back on the amniocentesis last week, and I'll paste in the update we sent out after that appointment. We had another appointment Monday (just one where the doctors were monitoring me), and our doctor was further able to explain what they saw last week on our ultrasound and why we are in the first stage of "the end." Noelle is receiving blood only when my heart is actively pumping...meaning that the 2 periods that it is resting in between each pump, she is not getting the flow. We don't know why this happened, and the doctors don't know why medically or physically, but we know that God has designed her for this purpose, and while we hurt tremendously right now, we also have peace "that passes all understanding." There are a lot of details, a lot of information that goes into explaining all the various conditions she is facing, but the last update we sent out will summarize it below. We do know and have faith that God can still change Noelle's physical circumstances, but we also feel we must rest in His revealed sovereign plan. If that is the outcome the doctors predict, He is good, and if He chooses to change it and perform a miracle, He is still good. We truly appreciate your love and prayers. Thank you!!
This is the latest update we are sending out to let people know how today (Tuesday, Oct. 25th) went:
----------------------------------------------
The amniocentesis test came back completely normal. Noelle has the exact number of chromosomes that she should, and she has no deletions or broken chromosomes. They could start testing at a deeper level and look at her genes to try and figure out a cause, but they have only developed a test that is able to do this within the past year, and it still is not fully reliable. She still has all the issues she had before and while I won't go into detail on all of them, the worst are that the placenta is small (this presents a multitude of issues in and of itself), her heart is not formed correctly and has fluid around it, she is extremely small, and the blood flow through the cord is not good...she is really struggling to grow right now. She has gained only 3 oz. in the past 3 weeks and now weighs about 7 oz. or about 185 grams. For them to even try to help her outside the womb at some point, she would need to be at least 500 grams...it is not likely she will ever reach this weight. The doctors believe the same results will still occur that they thought would happen if she had Triploidy. She will pass away some time in the next several weeks, and we will deliver her at that time. Yes, we are grieving--at another level this time because the news has been constantly changing through this past month. We know that God is in control STILL, and His goodness, love, and grace have not changed during this entire process. We do still appreciate love and prayers during these coming weeks as we walk through this and thank you for your love and support thus far.
-----------------------------------------------
Thanks for understanding and being sensitive to all this during this past month. In the end, it looks as if we are still walking the same road we originally anticipated, and we truly are at peace with that. Yes, it's extremely hard right now, but we still know that God's grace is sustaining us through this and beyond...and it's not about us or Noelle at all in the end. It's about Him. As harsh as that sounds to people sometimes, it truly is the main thought that carries us a lot of days. We still can't thank you all enough for your outpouring of love and prayers.
Thankful,
Tom and Jill
Because so many people are praying and others are asking and would like to know how to pray and because at this point we are not sure who knows our situation and who does not, we decided we would copy & paste our last update which we sent to our church family and a few others into a note everyone can read and know what is going on with Noelle. We appreciate all the love, support, and prayers from everyone. Thank you for caring for us and praying for God's will to be done and Him to be glorified through this. As a precursor to the information below as well, while we definitely need a level of sensitivity, please do not shy away from still sharing your good news with us about your children--especially new & current pregnancies and new births. We do not envy you. We love our little Noelle deeply and while we ache to hold her and watch her grow, she is our gift from God whether here or in heaven, and we would not trade her for the world.
(I apologize for any parts that are repeated. We tried to simplify this as much as possible and copy and paste things together so we did not have to retype the entire thing).
We went in for our ultrasound at 18 1/2 weeks (I'm now 24 weeks) and started learning that things weren't quite right with our little girl, Noelle Christine. We were scheduled for a more detailed ultrasound with a high risk specialist the following week and learned that they thought Noelle had a condition called Triploidy...meaning she had another entire set of 23 chromosomes, and this is a fatal condition. We eventually decided to proceed with the amniocentesis to confirm the diagnosis (very long story why we chose to do it, but the end result is that in our situation it would hopefully provide better care and less trauma for both myself and Noelle upon delivery). We finally got the results back on the amniocentesis last week, and I'll paste in the update we sent out after that appointment. We had another appointment Monday (just one where the doctors were monitoring me), and our doctor was further able to explain what they saw last week on our ultrasound and why we are in the first stage of "the end." Noelle is receiving blood only when my heart is actively pumping...meaning that the 2 periods that it is resting in between each pump, she is not getting the flow. We don't know why this happened, and the doctors don't know why medically or physically, but we know that God has designed her for this purpose, and while we hurt tremendously right now, we also have peace "that passes all understanding." There are a lot of details, a lot of information that goes into explaining all the various conditions she is facing, but the last update we sent out will summarize it below. We do know and have faith that God can still change Noelle's physical circumstances, but we also feel we must rest in His revealed sovereign plan. If that is the outcome the doctors predict, He is good, and if He chooses to change it and perform a miracle, He is still good. We truly appreciate your love and prayers. Thank you!!
This is the latest update we are sending out to let people know how today (Tuesday, Oct. 25th) went:
----------------------------------------------
The amniocentesis test came back completely normal. Noelle has the exact number of chromosomes that she should, and she has no deletions or broken chromosomes. They could start testing at a deeper level and look at her genes to try and figure out a cause, but they have only developed a test that is able to do this within the past year, and it still is not fully reliable. She still has all the issues she had before and while I won't go into detail on all of them, the worst are that the placenta is small (this presents a multitude of issues in and of itself), her heart is not formed correctly and has fluid around it, she is extremely small, and the blood flow through the cord is not good...she is really struggling to grow right now. She has gained only 3 oz. in the past 3 weeks and now weighs about 7 oz. or about 185 grams. For them to even try to help her outside the womb at some point, she would need to be at least 500 grams...it is not likely she will ever reach this weight. The doctors believe the same results will still occur that they thought would happen if she had Triploidy. She will pass away some time in the next several weeks, and we will deliver her at that time. Yes, we are grieving--at another level this time because the news has been constantly changing through this past month. We know that God is in control STILL, and His goodness, love, and grace have not changed during this entire process. We do still appreciate love and prayers during these coming weeks as we walk through this and thank you for your love and support thus far.
-----------------------------------------------
Thanks for understanding and being sensitive to all this during this past month. In the end, it looks as if we are still walking the same road we originally anticipated, and we truly are at peace with that. Yes, it's extremely hard right now, but we still know that God's grace is sustaining us through this and beyond...and it's not about us or Noelle at all in the end. It's about Him. As harsh as that sounds to people sometimes, it truly is the main thought that carries us a lot of days. We still can't thank you all enough for your outpouring of love and prayers.
Thankful,
Tom and Jill
No comments:
Post a Comment