The Day Our Lives Forever Changed ~ {One Year Ago...}

September 26, 2011 was a day we had anticipated for weeks as it was our first ultrasound, and we hoped to find out if we were having a little boy or little girl.  We had names chosen for both genders {even though we were very suspicious that we were having a baby girl} and were hoping to start envisioning nursery colors and ideas by the end of the morning.  Our appointment was scheduled early; and although the check-in process always seemed to take some time, the ultrasound itself went quite quickly.  We enjoyed watching our tiny baby on the screen while the sonographer took several pictures, confirmed our suspicions that we were having a girl, and then left the room for a while as she wanted me to walk and move around in an attempt to get Noelle into a different position so she could get the other pictures she needed.  In retrospect, I believe she was gone for such a long time consulting with the doctor on her findings; but we were oblivious to any hint of concern, being completely engrossed in talking and dreaming about our little girl.  Upon the sonographer's return, we discovered that Noelle had not budged at all, so we were given a few printed pictures and shown to the waiting room until we could meet with the doctor and discuss the results.  I remember being disappointed that I was given only a few pictures {since I had friends with refrigerators full of ultrasound photos} but figured it was due to Noelle's position and did not think much of it beyond that. After some time, which we spent texting family and friends our exciting news, we were taken to the doctor's office to discuss our baby's progress.  The next moments would bring heartbreaking news and change the course of our lives forever as the doctor informed us that they were seeing multiple "soft markers" in Noelle's measurements along with some other concerning signs, and they needed to schedule us for a high resolution ultrasound with a high risk specialist to get a more clear picture of exactly what was happening in our pregnancy.  The doctor gave us a lot of information but kept things pretty vague overall, since they honestly had no idea what we were facing.  The one thing they basically {although not concretely} ruled out was Down Syndrome, leaving us with more unanswered questions than we ever thought possible.

We left the office with the assurance that someone would call us shortly to schedule the next appointment and instructions to stay off the internet for information as much as possible.  As we sat in the car for a moment, I think the shock began to settle into our minds; and Tom took my hand and began to pray, and our tears began to flow.  We loved this little baby, Noelle Christine, with all of our hearts and were so grieved that she might face major challenges in her life.  At the time, we did not consider a fatal condition, although it had been mentioned as a possibility.  We drove away, and I began letting close family and friends know the uncertain news and asking them to pray.  Almost immediately, my best friend, Sue Shaw, contacted me back and asked if we wanted to have lunch together, understanding if we wanted some time alone together but also wanting to be there for us if we wanted to talk to someone.  She was nearly nine months pregnant with her second little boy, and we were all looking forward to the impending arrival of this little one.  Tom and I decided it would be nice to see her and Alex {her first little boy}, and even though she was being monitored for some early signs of Preeclampsia that she was experiencing, she dropped everything and came to meet us for lunch.  It was a sweet time of fellowship and encouragement as she just listened to us explain what we had been told {which was not much at the time} and then talked through a little bit of what we were thinking and feeling.  Tom and I were processing things differently, but ultimately we knew that God was in control of the situation, regardless of how things felt in the moment.  Sue offered to let our church elders know the situation, and I gladly and thankfully agreed {since contrary to what the blog now suggests, I am actually a very private person who prefers to share one-on-one and have had to learn to become more open on a much larger scale, due to our situation this past year}.  As we parted ways for the day, she assured us of her love and prayers and made sure we knew that she and Aaron {her husband} were available to us any time of the day or night that we might need them for anything.  As I look back on that day, one year ago, the memories are so vivid that it truly seems like it happened only this morning.  However, today is different because my baby girl is sleeping in her cradle, and a blog full of posts exists with evidence of a hard fought journey since that day.  I am incredibly grateful as I look at the blessing which I hold in my arms today, but I am also reminded of the blessing of my dear friend, Sue.  She was a great friend before all of this began; but since that time, she has proved her steadfastness, her faithfulness, her love, and so much more as she has sought to demonstrate Christ-likeness to us in a multitude of ways.  She and Aaron have never failed to be there for any need we have expressed {and even many we have not voiced}; and while there are many in our church body who have also faithfully and lovingly been there for many of our needs, Sue and Aaron are always the first ones we call.  Words could never express our thankfulness to God for bringing them into our lives, and we are ever grateful to Him that we are now looking back on a year full of much learning and drawing closer to Him.  His grace has truly been sufficient for it all.

~One Year Later...with Our "Huge" 9lb. 4oz. Little Girl~

NICU Day 14 (December 21st)

Noelle had a good day overall today.  They still have her on the new ventilator and have not put her back onto the jet ventilator as of yet so we're hoping this will stick with her and she can graduate to the CPAP machine in another 10 days or so.  Her white blood count was lower today and no news has come back regarding an infection as of yet, so we're thankful for that.  Her blood sugar has been stable, and they are trying to adjust her different fats/nutrition that she receives to help her start putting on weight and growing.  We did find out today that she had what they consider to be a level 2 brain bleed.  They re-evaluated her last cranial ultrasound with a neurologist and believe they saw a small blood clot; however, this level is not usually anything that has long term effects, and she does not seem to have any side effects currently from it.  They will continue to do ultrasounds every week or two to monitor it just to be safe, but they believe we are past the worst danger point for her to develop anything further with it.  There still is a concern for her to develop NEC, and this will be the most crucial for the next month or so.  Currently, she is tolerating her feeds very well, and they bumped her to .6 today so we are thankful for that too.  Overall, a good day and another day down.  She will be two weeks old in just a few more hours!!  Thanking God for each day...

NICU Day 9 (December 16th)

 ***Written by Chris McDowell, Jill's Mother***

Today brought mixed emotions. Noelle is tolerating the reintroduction of the feedings very well. They were to increase the amount they are giving her sometime today. The amount they are raising to is the amount they originally gave her, but she has done well the last 24 hours so they feel her system may be adapting.
They are "bumping down" the ventilator setting. There is one area of her lung that looks to be "lagging" behind. It is believed to be because the ventilator is doing too much of the work and her oxygen saturation levels are good so they will back the ventilator down to do a bit less which in turn should make Noelle's lungs work more and thus continue to mature.
She is on the medication for the hyperthyroidism. Hopefully we will start seeing the results of this in the next couple of days -- blood sugars more steady, the slight "bulging" of her eyes receding, and her gaining more weight just to mention some. She has put on a bit of weight.
She was awake more today and looking around.
Major prayer concern (along with the regulars) is that a new doctor was on service today and expressed concern about the comparison of last week's ultrasound on the brain (which we've been told was fine) to this week's ultrasound of the brain. He is concerned there might be an increase in fluid in the brain -- which could be very problematic. He is asking for a pediatric radiologist to review it, but in the meantime Jill and Tom are in limbo and not really sure what this would mean nor what to expect. Lack of sleep, recovery from C-section and for Tom going back to work this week -- it's all a bit overwhelming. They are praying and just trying to stay focused and not react. The doctor that was the neonatologist present for Noelle's birth is on duty tomorrow so they are going to meet with him and go over some of this "stuff" in detail with him tomorrow (as long as he doesn't get called to an emergency delivery or such).
I know they would greatly appreciate everyone's continued prayers as all this continues to get worked out and figured out. Noelle is so far away from being "out of the woods" that it can be overwhelming not knowing what God actually has in store and like Jill said, "sometimes it's not even about you, but what God is trying to accomplish through you in someone else's life". It's just not always fun walking the road and even more difficult when tired emotionally and physically. They are doing well, but I thought I'd share a bit more so you all could pray a bit more specifically right now. Thank you so much and God bless.

NICU Day 2 ( December 9th)

 ***Written by Chris McDowell, Jill's Mother***

Today was a "good" day. Jill is doing well and no problems with bleeding. They keep checking her blood and she has to still have a hep lock in for safety backup. Someone asked how far along Noelle is. She is 29 weeks, but last measurements a little over a week ago she was only measuring 22-23 weeks in size. She is the smallest baby this ...hospital has had. One baby born just a little bigger than Noelle just went home this week.
Her oxygen levels were doing so well last night they dropped her on down to 21% oxygen and Noelle's O2 levels began to drop so they bumped her back up to 75%. She responded well and they weaned her back down today and she is presently on 24% which the doctors are very pleased with.
They are still running detailed blood tests on her DNA, but so far the US showed mild fluid in the kidneys which they believe could even be resolved now because she has good output. The preliminary on the ultrasound on the brain is that everything looks good. The doctor just want to get one more specialist's opinion on it, but the doctor said they don't believe there is anything that they can see. The nurse told Tom tonight that they got the results back from the ultrasound on her heart and everything appears normal. They should get a full report in the morning when the doctors do grand rounds.
They have been taking blood to check oxygen levels and the genetics doctor took to run DNA testing so they will probably give her a tiny transfusion tonight, she was 1/10 of a point below the level they want a certain blood level at.
Her blood pressure has been running a bit low and they have been giving her a drug called Dopamine in small increments. This evening it was finally up to a level that they are happy with.
They are pumping all kinds of nutrients into her along with some "fatty emulsions". I guess last night she wasn't tolerating the fatty emulsions well so they have backed off for now and will reintroduce later. They hope to insert a feeding tube in the next few days and give her breast milk.
She appears to be very responsive to Jill and Tom's voices and continues to be called feisty by the doctors and nurses. They can't believe she is so active and responsive.
The medical team has been great, but they continue to lovingly share with Jill and Tom that because Noelle is so tiny she is still "very sick" and anything and everything can be a factor in causing her risk. It is minute by minute and they greatly appreciate everyone's prayers, support, love and care. They are thankful for every minute God has allowed them to have with Noelle.
Good night to all.

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