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Tuesday, February 15, 2011

Genetics Visit & OB Visit

We had an appointment yesterday with our Genetics specialist and today with our regular OB.

The Genetics Appt~It was certainly informative as far as biology goes. We wish we had paid more attention in biology class in times like these....
Our Genetics Counselor, was extremely nice and helpful, she answered a lot of questions and informed us of future testing options. I didn't sleep a wink the night before. I was mindlessly wondering about the appointment, because we had heard through many people that this would not be an easy appointment. Overall, we were fortunate that ours went as well as it did. She went over all the possibilities and was somewhat hopeful in that we have eliminated chromosomal issues. The next most common issue is a heart defect. We won't know exactly if we have that until our next appointment with the specialist, which is March 4th. Hopefully then they can tell what we may or may not be dealing with in heart issues. We may have to wait even a week or 2 after that to see and possibly have a fetal echo done, to check the heart out a bit further. As we said before, its a process of elimination at this point until we see something that gives reason for the hygroma. But that is really our next step. There may be need for an amniocentesis, but we aren't sure of that yet. That sample would be used to have a microarray testing, which could give us more information on other syndromes, that the CVS cannot test for. However,at this point we're not sure if we're having that done. It's all so overwhelming so we try to approach it all with one step at a time. So, our March 4 appointment will be the most revealing thus far and we continue to hope and pray for that appointment.

OB Appointment~We met with our regular OB today and it was pretty routine. Our little girl's heartbeat was heard through the doppler and due to all the Specialists ultrasounds, we did not have to have an ultrasound done today. We did have some more routine bloodwork done and hopefully those results will be just fine. So basically we had a simple "check in" appointment so our OB can keep stats on us as well.

We are relieved our round of appointments are completed for a while. We don't go back to either Doctor until March 4th. We'll try to get some r&r in during this little 2 week break. Sooo, to be sure we make the most of these two weeks, we are headed back to Asheville tomorrow for a long weekend at The Grove Park Inn! We are very excited to go and getaway and enjoy some family time, spend a day at the Grove Park Spa :), and enjoy the beautiful weather!

Thank you again for your continued prayers. It is so heart warming to see so many acts of love each day done for us, we are so blessed by them all. The many "gifts" that keep "appearing" on our porch, the wonderful emails and texts, your stories of hope,the many prayer lists that you have graciously added our names too, every act leaves us in awe. Thank you, thank you.

In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven. Matthew 5:16

By your many acts of love, you are a shining light in such a dark time. Thank you for being our light. When we experience the abundance acts of love for us, we can't help but thank our heavenly Father for our wonderful prayer warriors, friends and family.

Friday, February 11, 2011

Our Appointment Update

We are sorry this is so late today, but it's been a busy day. We arrived at Northside for our appointment with our specialist promptly at 7:45am. We were quickly whisked away to the ultra sound room, which is very large, detailed, and has many screens since it's a specialist practice. We saw our little girl, her heartbeat was good, and it was the first time we saw her all "curled" up. She was sleeping soundly. They really needed her to wake up and move around a bit to get some anatomy pictures, but she really wasn't into waking up. She wiggled in aggravation but was sleeping soundly. :)
Jimmy giggled saying she's just like me as I'm hard to get up in the mornings.
I must say, I was a proud Mommy, as she conducted the entire 30 minute ultra-sound with her legs crossed. :) (I totally ate that up)I told the ultra sound nurse that that is because she is a lady, of course. :)
They tried and tried to get her to move, nothing crazy or forcefully, but I think she felt it was simply still too early in the morning for all this business.
They took the best pictures they could get in the long detailed ultra sound. They reminded us several times that it is still very early to see the structures since we are at 15 1/2 weeks, but today they didn't see anything unusual as far as structure and anatomy. Ultimately though, they should really be able to tell on our next appointment with them, which is March 4th. Again, we take our small victories and are thankful!

The hygroma~It was still there and they didn't get great measurements on it, from the way she was sleeping. But it doesn't appear to have grown, which is good. She did have a vein or artery missing from her umblical cord, as its to have 3 and she just has 2, which is often an indicator of a syndrome.

Our CVS tests results, as we knew, were normal so we talked to the Doctor on that and she recommended our next steps should be to meet with a genetics counselor and to consider a micro-array testing. This test would show approximately 80 more possible syndromes and be a little more detailed. We are in the process of researching that as well as preparing for our genetics counseling appointment, which is Tuesday, the 15th. We hope to inform you all of more then.

We didn't learn a lot of new information today, but it wasn't bad news either. Just somewhat of the same situation. We know our outlook isn't "medically" great, but we again, have to rely on the hand of the almighty father to carry us through whatever the future may bring, and we felt the peace and prayers today on our appointment, so thank you. Many of you ask "when will they know?" The truth to that is, possibly at 20 week ultraound, or possibly even later. It's a process of elimination at this time trying to detect what exactly is causing the hygroma, as well as a process in waiting for our little sweet one to grow some more so organs can be seen and development can be accurately assessed. I know that's not as soon you, or we, would like, but we have to be patient in this process. That's not easy for anyone, but overall we truly have a calmness that helps us tread through the unknown waters. It's not always easy, I don't want to "sugarcoat" things, but we truly take it day by day and continue to trust the Lord in what He has planned. We don't know whats coming with each appointment that we wait for, but we do know the One that holds tomorrow and we simply try to remind ourselves of that each and everyday, as many times as it takes.

Thank you isn't a strong enough word for us to express to you all for praying for our family. We are being prayed for across the country and even as far as New Zealand! We are humbled and blessed by your acts of love and by all the prayers you offer up for us. Don't for a second think we don't soak up each and every email, comment, post, letter, card, or many acts of service done our behalf. Those things fill our 'love tank' and help remind us, we are not alone, for we are blessed.

With much love, hope and faith,
Jennifer and Jimmy

Monday, February 7, 2011

Updates

It's another week and we just wanted to give everyone an update. You all are precious for the abundance of continued calls, texts, meals, emails, cards, posts,etc. We just can't say it enough, we are overwhelmed and our hearts are full from YOU! Each and everyone of you that reaches out, even the ones we haven't ever met personally, it is amazing and we feel your love and prayers!

Late last week we received the final results from our CVS, and they are the same as the preliminary results, they are normal, which was a nice relief. This is good news, but also leaves us, and the Doctors wondering what exactly is causing the hygroma. There are A LOT of other reasons that this could be occurring, we are just eliminating some of those one by one, which is what the CVS did. The Doctors are quick to tell us that there are still many many other major defects, and neural tube defects and heart defects that are NOT tested with a CVS. The heart chambers, skeletal structures, and main organs are not really able to be diagnosed with any potential issues until 20 weeks when she has had some time to grow. We entered our 15th week this week.

We go back to our specialist this Friday morning, the 11th. We will be sure to update our blog after our appointment. At this appointment we hope to discuss and leave knowing more about the results of the CVS test that they did. We know they are normal chromosomes, (which again we rejoice in small victories!) but we still have a long road to face and pray each day that the hygroma is miraculously healed and our baby is healthy. Some say that's too optimistic, in terms of medical thought, but we have heard and seen stories of healing's before in this exact arena and we pray ours is one. We do know that God is with us in this every single step. We rely on our faith and scripture knowing that there is a purpose and a plan. It hasn't been an easy road at all, we are on the roller coaster of emotions, some days are better than others, and some are downright overwhelming as you can imagine. But we are truly held up by our wonderful friends and family. The continued messages each and everyday that people are still praying for us is beyond incredible and we are forever grateful for every single one.

We continue to pray for a miracle and cling to the everlasting arms. There is no better place to be. Thanks for opening your hearts on this journey with us.

With much faith, hope and love,
Jennifer and Jimmy

Wednesday, February 2, 2011

A Morning Visit with our Little Girl

This morning we had an unexpected Doctor's appointment, which turned out to be fine, and things are just as they were,nothing new, but it gave us an opportunity to see our little girl again. With us being at 14 weeks, this was the last time they said that the baby would fit on the whole screen. This visit was to our regular OB, who had not seen us since our CVS test. She reiterated how rare this (a hygroma) was and how she doesn't see it often. She then asked "So what are you going to do?" I was taken back hearing those words. I explained to her that we planned to carry this baby as long as God allows. I think I was a little caught off guard by her question, since we hadn't really thought twice, but I realized we have not seen her since our appointments and that the last time we left her office we were still in shock and there wasn't much talking that day, other than directions to the specialist. But I certainly declared our intent very clearly and she smiled.

I usually cannot bear to watch the ultrasounds, because to me its just a reminder of what we may not ever see or get, however, today was different. I didn't shed a tear and looked in awe. (I always look, I'm just usually crying the entire time). Our little girl was sucking her thumb and had a strong heartbeat, and plenty of fluid. Her hygroma was still there, though we are not sure of measurements or anything at this time. We will know more when we get the final CVS results (hopefully this week), and when we see the specialist next week.

It has not been an easy few days since our weekend getaway, a lot of unknown, and a lot of scary terms and things that are floating around make for a lot of fear and concern. But we try to get through each day being gently reminded, we must trust and seek peace in the giver of life. Our daily prayer is for the hygroma to resolve, for a wholly healthy baby. We know God's plan for us will be laid out by Him and Him alone. We know that we can trust Him because He is the same God that goes before us and has restored trials to us before. Understand, that we know restoration will come no matter the outcome. It's hard to swallow, hard for us sometimes to grasp, but it's something we know without a doubt. This blog started as a path to restoration several years ago, and it will continue to be.

Some have asked how we "know" and we simply have 2 answers; faith and scripture. We must cling to both to survive. Please hear me, this is not meant to be a "bible lesson" in the least, but for those asking, here are the scriptures we put our faith in:

His Will-we know His will will be done by Proverbs 20:24 (A man's steps are directed by the Lord, how can anyone understand his own way?) and Proverbs 16:9 (In his heart, a man plans his course, but the Lord determines his steps)

Trust
-we know we can trust Him because Romans 8:28-(All things work for he good of those that love the Lord)and Psalms 32:10 (Many are the woes of the wicked, but the Lord's unfailing love surrounds the man who trusts in Him.)
Proverbs 3:5-6 (Trust in the Lord with all your heart, lean not on your own understanding, in all ways acknowledge him and he will make straight your paths.)

Restoration-We know he will restore this situation (again, no matter the outcome) because
Ecclesiastes 3:11-He makes all things beautiful in his time.
Philippians 1:6-He who began a work in you, will be faithful to complete it.
Psalms 147:3-He heals the brokehearted and binds up their wounds.
Jeremiah 29:1- For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

That is all the "answers" I can provide to the many that have emailed and asked "where do you get your hope, and faith and belief?" The Word of God is filled with many many more promises but these, some of the simplest ones, are closest to our heart right now. Bless you for wanting to know what we are trusting in. For the ones inquiring, I hope in some way you can use these verses in your own lives for whatever it may be you are seeking and we hope they give the same comfort to you as they supply to us. Frankly, I'm not sure how we'd survive this trial without faith, in fact, I'm not quite sure how anyone lives without it.

Thank you again to our prayer warriors, the emails, posts, meals, flowers, calls and texts. We cannot thank each of you enough! To see a glimpse of what you're a part of praying for, here she is.....