Giving Thanks Challenge ~ {Day #2}

Thanksgiving Challenge ~ Day #2
Topic: Noelle
Title: Tiny Fingers

{If you are new to this challenge, you can catch up on the details here...}

We love things that are miniature.  People everywhere never seem to tire of stopping to ooh and ah over things or people that are tiny.  I think that is part of the attraction with babies; they are miniature versions of us, and there is something unique and special about that, different than any other type of miniature dog or toy.  We are fascinated with babies' tiny ears and mouths, and we count all their toes; we marvel at their sweet little eyes and their itty bitty noses.  But it is their fingers which you often find us touching and holding more than anything else, I think because it is one of the first things they use to respond back to us.  That sweet "grab and hold" reflex warms our hearts; and you often find people reaching out to babies' hands, knowing that those little fingers will grab tightly onto theirs in an immediate response.  Noelle's fingers are extra special to me.  I think partly because after she was born, it was really the only part of her which we touched for many days; and she responded to us.  Her fingers were the tiniest I had ever seen in my life; her entire hand was barely the size of my pinky nail.  She could not grab onto our fingers the way most babies could, but it did not mean that she did not try!  It was through this touch, between our fingers, that we physically communicated that we were with her, encouraging her to fight hard with us by her side.  But there is another distinct reason why I thank God for these darling fingers.  I am not sure we ever publicly shared this detail since it was the least of our concerns at the time; but at our first high-risk ultrasound, one of the issues they believed they saw in Noelle's development was that her fingers appeared to be deviating to one side, at least on her left hand.  At the time, they were convinced it was yet another sign {of the many they had seen} that pointed them to the Triploidy diagnosis.  As we went through many other ultrasounds through the following weeks, they were never again able to get images of that hand; and so it was yet another thing we would have to wait and see, if she even survived the pregnancy.  Still, with all the other grave concerns she was facing, it was not the first thing I remembered after she was born.  In fact, I think it was later that night or the next day before I thought of it and asked Tom, "what about her fingers?" and received the reply {with a huge grin}, "they are absolutely perfect."  It is a small thing in comparison to all of the issues she has overcome, but these perfect, petite fingers {which are now giant sized compared to when she was born!} are a constant reminder of another evidence of God's grace in our lives; and today, I thank Him for them.

***Do not forget there are only a couple of weeks left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

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