12/5 Echocardiogram Update

Today was not very successful in the medical sense.  Noelle was curled up with everything in front of her heart and refused to budge except for a small wave of her hand once in a while.  Of course she was moving plenty about an hour afterwards!!  So, we have to go back next Tuesday for another echocardiogram.  They were able to see a few things, and what they saw seemed to be "normal" but they said to take that with a grain of salt since none of their pictures were clear.  Still, it was encouraging to hear that nothing is glaringly wrong as of yet.  There is still fluid around her heart which they want to monitor closely, but sometimes babies are born with this and as long as it doesn't increase or develop in other areas, they tend to leave it alone and the babies are usually fine.  After the echocardiogram, we then met with a neonatologist who gave us a tour of the NICU at Forsyth and sat down and talked with us at length about possible outcomes and paths to take with our future care.  The information was scary and overwhelming in a lot of ways as there is still a long road ahead if Noelle is born at such a small size, even without heart complications; but it was also encouraging to see the level of care which they extend, and the communication between our doctors this past week (after switching all our care over to Wake Forest...long story) has been incredible.  The neonatologist already knew Noelle's name!!  Ultimately, we know that God has sustained us all this far, and Noelle still rests in His hands whether she is in the womb or in the NICU, and He alone will determine her outcome.  In the meantime, we have to discuss and start making decisions about how soon we will enter the hospital and begin constant monitoring of her heart and blood flow along with some other things.  We're hoping to put it off for at least a couple more weeks and let Noelle grow and be able to make some plans for that time period, but for now we'll just keep going one day at a time and see how things progress.  We'll continue to keep you posted as we find each new thing out--it's an amazing journey for certain!!  Thanks again for praying...I know we say that every time, but you have no idea how that encourages our hearts.  We know that God's plan is already determined, but it still is an incredible encouragement to know that others are bringing Noelle, by name, before His throne.  Thank you.

Sincerely,

Tom and Jill

11/15 Update

We are pasting in our latest update from our ultrasound today.  While the results may still be as originally believed, they might not!!  We're so thankful that we can rest in God's sovereign plan and His goodness during this.  We're also thankful that amidst the ever changing news we have been receiving these past 2 months, we serve a God who is never changing and who knows the beginning from the end.  Thank you for your continued support, love and prayers through this. 

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UPDATE 11/15:
We had another ultrasound today and the results were different yet again.  The doctor is actually calling Noelle a "little miracle baby" and offering hope for the very first time!!  They were very pleased with the way her heart has formed in the last few weeks, and it was unexpected.  There still is an issue with one part of it, but now they are thinking it may be an "easy" fix that will not require open heart surgery.  She still is extremely small and needs to gain about 150 more grams for them to be able to help her outside the womb, but the doctor was very encouraged with the growth that she did see.   The blood flow through the cord is still not normal/great, but it has not worsened as they expected it too...so far.  There still are a couple of other issues which they believe are present but they don't have a clear picture what those really are or what it means for her life, after she is born.  Basically because they still do not have a diagnosis, it's still very difficult to give a prognosis.  But our doctor was smiling at us today!  The tone was completely different than any other appointment the last 2 months.  They are trying to schedule us to see a prenatal cardiologist on Thursday who can look at Noelle's heart and better diagnose what the condition might be and if/how it can be solved.  There are still many unknowns, but thankfully those are not unknown to God.  Whether the outcome is still as originally predicted or whether He is changing that, we're thankful that we can continue to rest in His goodness.  We went from the beginning of the appointment, being advised that based on our last ultrasound there was a good chance they would not detect the heartbeat today...all the way to the doctor smiling at the end and saying she never thought she would see us come this far, especially based on our last 2 ultrasounds.  Again, thank you for standing by us through all of this and continuing to pray.  We are learning to rest and wait on Him more than anything right now since the news is ever changing and no one here knows the real answers.  It's amazing how much peace there is amidst that.  We will continue to keep you updated and let you know if we end up seeing the cardiologist on Thursday.

With much love and appreciation,
Tom and Jill

The Beginning of this Journey

~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:
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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.
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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