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Monday, March 30, 2009

Showered with Love...

"A friend is one who strengthens you with prayers, blesses you with love, and encourages you with hope."
Over the last four months, Michael and I have been so encouraged by our Greenville friends! We have only lived here for two years but it feels like much longer. We have no immediate family in the area, and our church family, and my friends from several moms groups have really reached out and made us feel at home.

I came across the verse below one day and it dawned on me that we really are in the perfect place for us for this time in our life. By being separated from family, we have learned to lean on our church family and local friends much more.

Proverbs 27:10 (The Message)

10 Don't leave your friends or your parents' friends
and run home to your family when things get rough;
Better a nearby friend than a distant family.

Since sharing our journey, I personally have been showered with such an outpouring of unexpected support and love. Below is a handmade flower bouquet, "prayergrams" (something our church does where someone prays over your request and sends you an uplifting note on the request), cards (many handmade by a crafting group that doesn't even know me personally!), and some flower bouquets. And there are numerous emails and facebook posts I've received also sending prayers and encouragement our way.

As if that wasn't enough, several friends have asked on several occasions about throwing me a baby shower. I have, on those occasions, declined (knowing that Rebekah's future is questionable and not wanting to accumulate a bunch of girlie things that I might never get to use.) Well, they loved me enough to keep asking, and I finally relented to a 'Shower of Love'. This was different from a traditional baby shower. Gifts were focused more on things the family could use, or things that would help us make a memory box for Rebekah (if it comes to that). We received lots of gift cards. Words of encouragement were also written down for both Rebekah and me (which I will have to share in another post when I am not so emotional), and a scrapbook is being put together of the event. The wonderful women who arranged that party though did get some pink stuff for me, and was I ever excited!

So for the last few months, we have been totally showered with love!

Here was the cake that was made for the shower of love. The cross, baby & bear are all made out of fondant, but were removed from the cake to save as a keepsake.

This is the cards, notes, and a memory box for them. These notes were so encouraging!

-has touched the heart and souls of many.
-is strong, persistent, and loved!
-is precious, delicious, sweet... a bright star.
-has a family hand-picked by the creator for her.
-is an amazing blessing.
-has God's hand upon her.
-is prayed for.
-dwells peacefully in the shadow of the almighty.
-is a beautiful and amazing blessing.
-is loved.
This is a hand-drawn picture from a dear artist friend depicting the character traits and likes of each of our children - Elijah, Jeremiah, Isaiah, Josiah, and Rebekah.

The artist also had this to say about our baby girl:
Ray of sunshine
Energetic kicker
Awesome angel of God

Here's are some of things I was showered with...
New PJs, robe and slippers

A beautiful birth certificate holder, pink cross plaque, pink hair bows & pacifier clip, lovey...

Some beautiful preemie clothes, the cutest tiny shoes and princess socks, girlie receiving blankets and burp clothes (the two on the top left are funny - I Could Use a Spa Day, and Beware of Mood Swings).

Probably the most unique gift was this Celestial Registry of a star named after my Rebekah Budd! There is even a map with coordinates so if we ever have access to a telescope we can find it.

I really wanted some items for creating momentos and for Rebekah's memory box and pictures at the hospital. I now have several hand and foot plaster kits.

There were several very lovely pieces of jewelry which will look precious on her hands in a photo. And my neighbor (who makes jewelry) made a beautiful Rebekah bracelet which I have worn daily.

My mom has made cross stitch quilts for each of our 4 boys. She started on one for Rebekah earlier and, in December, when we found out she definitely had trisomy 18, she had already completed the design. It couldn't have been more fitting for our baby:

Our biggest surprise was presented this past Wednesday at our church's choir/orchestra practice. Over 90 families gave money to an incredibly generous Rebekah Budd Fund meant to help us out with medical costs, or if it comes to it, funeral costs. We were truly left speechless, humbled, loved... did I mention speechless?
Along with the check came this beautiful framed and matted picture of Rebekah from one of her ultrasound pictures with the verses from Psalm 139:13-16. It couldn't be more fitting and perfect.

This is not a journey I have wished for, wanted, or would wish upon anyone else. It's also something that I honestly didn't mean to become such a big thing. I was led to share my experiences and, before I knew it, it was being shared with even more people. It has been somewhat disconcerting for everyone to know what is going on in our lives, but it is also a relief because I don't have hide the truth of what is going on or what I'm feeling. And having hundreds of prayer warriors... well who would NOT want that?!

I can say with complete honesty that we were brought to Greenville, SC for such a time as this. This kind of support and love is just an incredible gift to us and I am so greatful for God's glorious grace on us. And sometime, I will have to share our testimony of how God spoke to us when we were church hunting. It is amazing to see how the pieces fit in place and His hand was obviously upon us, guiding and teaching, leading us to develop the support network we would need in the future. But that is a story for another day...

Thank you, my friends - I love you all dearly!

Saturday, March 28, 2009

3/20 and 3/27 Rebekah Update

Proverbs 19:21 (NIV)

21 Many are the plans in a man's heart,
but it is the LORD's purpose that prevails.

Psalm 112:7 (NIV)

7 He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.

Just a quick post to give an update of my last two appts.

3/20/09 -

We went to our appt with high expectations of seeing repeat performance from Rebekah's 2/28 visit (she had gained almost a pound in 3 weeks and made lots of progress, from our viewpoint). Unfortunately, it was not nearly as good a report. Our first reaction was sadness, frustration, loss of hope. Looking back, it wasn't that it was a bad appt, it just wasn't as good. Instead of focusing on the blessings (like the fact that Rebekah is obviously a fighter), we were hard-hit by the roller coaster ride of carrying a trisomy 18 baby.
  • Rebekah had gained about 5-6 ounces only and is now 3 lb even.
  • My amniotic fluid level dropped from a 17 to a 9! Anything below 6 is too low and usually results in an emergency delivery. Dropping almost in half in 3 weeks made me pretty nervous. This also indicates that there is a problem - either with my placenta, or with Rebekah's kidney or brain function, or most likely with both. (Not that this was new news, it is expected with a trisomy baby.) She isn't getting the nourishment she needs to grow and, if my fluid levels drop much lower, we greatly increase the risk of her being stillborn.
  • Just shy of 34 weeks, she is measuring like a 28 week old baby.
  • Our doctor seemed more melancholy this appt and prepared me for a possible induction 3 weeks early (as opposed to the 1-2 weeks we were originally expecting). He even hugged me after we talked (since Michael and I were both going through the tissues pretty fast.)
I posted a much more detailed posting of this on my facebook account right after our doctor visit because I couldn't access blogspot to give an update. I received 56 comments on facebook of continued prayers being lifted up! Wow! What outpouring of support and love! And I know lots of people that are praying that didn't post anything. This is one blessed baby!

3/27/09 -
This appointment, thanks to all of the prayers and God's continued comfort, went much better. We didn't get to evaluate her weight again because they said one week's difference wouldn't really show on the stats, especially since the ultrasounds have a +/- 15-20% error rate. What we did get to find out...
  • The cord flow was 2.1 - anything below 4 is good (it measures pressure, so higher is not good). This was awesome considering I have a 2 vessel cord (not the typical 3 vessel cord).
  • My amniotic fluid level was back up to 12!!! God is soooo good!
  • We got to see Rebekah practice her breathing! We could see her little chest going up and down as she mimicked breathing. Most people don't get to see this incredible show unless they are privileged to the multitude of ultrasounds that we get to have.
  • Rebekah appeared stable, and we went back to a 2 week early induction outlook. The best part of this is that my specialist wants to deliver the baby! (He could only do this if we do schedule it, and we would be so happy to have him there over one of the regular OB's. This is a doctor who truly cares about us and our baby, and has done much to encourage and respect us in all of our decisions. We love Dr. Grieg and are thankful that God led us to this Christian specialist!)
  • We finally got some good 4D ultrasound shots. I have more pictures on my facebook account.
Look at her hint of a smile!

Thursday, March 12, 2009

God's Hand at Work

It's been a while since I gave an update on our baby Rebekah, so I wanted to make sure I shared the news from my last ultrasound. Since some of you reading my blog my not fully know/understand about trisomy 18, I am going to recap what we are going through so you can appreciate the significance of where we are today.

Trisomy 18 - 101
I am currently 32 weeks pregnant with a baby girl who has been diagnosed with Trisomy 18 through amniocentesis (a 100% accurate diagnosis). Trisomy 18 is caused by an extra 18th chromosome. (Downs Syndrome is an extra 21st chromosome.) It is much more serious than Downs, in that 90-95% of the babies die in utero (stillborn). Of those that survive, only 10% of them make it to their first birthday (so like 1% of the trisomy 18 pregnancies) and the median lifespan is 14 days.

In most places in the country, abortion (based on AFP or quad test results only, or a single marker on an early ultrasound) is highly encouraged. This was never an option for us, so we choose to carry her and love her for as long as God will allow us to. The only reason we consented to the amniocentesis in the first place was because she was showing so many birth defect 'markers' on our 20 week ultrasound, that we needed to know what we were up against in order to prepare.

Her early markers included: choloroid plexis cysts on the brain, a 2 vessel umbilical cord (they are supposed to have 2 arteries and 1 vein, mine only has one of each), a VSD - hole in the bottom chamber of the heart, 1 kidney, and a 'rocker bottom foot' (club foot). There were also other things like retarded growth, head shape, etc. The only way to know for sure what chromosome abnormality we were dealing with was through an amniocentesis which looks at cells in the amniotic fluid. These are derived from the cells that also make up the baby. Based on all of the markers and the result of the amniocentesis test, our specialist is sure we are dealing with full trisomy 18 - labeled as incompatible with life. As you can imagine, this is a devastating diagnosis for any parent. Between this then learning the statistics of what a baby labeled as 'incompatible with life' means, we have been heart-broken for our baby girl.

In addition to these markers and things you can see on an ultrasound, there are a lot of other potential issues that just can't be detected from an ultrasound - how the brain is going to function, if it will tell the organs how to do their job, organ issues that can't be detected via ultrasound, etc. Many trisomy 18 babies die in their sleep because they simply stop breathing or the heart gives out. Many of them don't have an esophagus that attaches to their stomach, and even when they do, they cannot suck or swallow properly. All trisomy 18 babies have extremely retarded mental and growth patterns and, even if carried to term, will appear in size and development as a preemie. I was warned that due to her chromosome issues, I would have all kids of problems like gestational diabetes, preeclampsia, toxemia, polyhydraminous (too much amniotic fluid due to slow growth of baby of not processing the fluids correctly - which can lead to breathing problems in the mother, prolapsed cord, preterm labor, higher risk for additional birth defects, etc).

On top of all of the medical issues, we also have to deal with the cold-heartedness of people and medical staff that do not see a reason or purpose to carrying a baby like this to term. When asked early on what medical interventions we should think about, our geneticist stated that we should "save your money and send your older kids to college." I've heard comments like "that's what happens when you have a baby at 40." Many people have commented "At least you have 4 healthy boys!" (as if that would offset the pain and suffering of going through this experience.) An OB even tried to scare us into complying with their standard practices by making us feel that we would not have a say in how the birth experience would play out. Yes, we are asking for some out-of-the-ordinary care, but nothing that will cause the doctors or hospital extraordinary costs or change in process. This is a situation that is out of the box of normalcy. Some things got to give!

OK, now for the POSITIVES... I had an ultrasound on 2/27. In 3 weeks, Rebekah had gained 15 oz (almost a whole pound!) and was about 2lb 10 oz at 30 weeks. If she continues on that growth pattern - she'll be well over 5 pounds at birth! She actually was on the chart (even though it was at the 3% range)! In addition, we could NOT see the hole in her heart. Neither could the ultrasound tech. I am telling you, it was big enough 3 weeks prior that, even to Michael and me, it was evident. The doctor will not confirm this, of course. We could no longer see the cysts on the brain - although the tech did say that it becomes harder after 28-29 weeks to see into the brain because the skull starts to solidify more. We could see obvious fluid in the stomach and bladder - which indicates that she is most likely swallowing and her one kidney is working. She is very active and, since Dec, we have seen no new concerns show up. We do not see the constant clenched fists so typical of these babies. My amniotic fluid levels are NORMAL and I have had NO pregnancy complications/issues. My specialist actually thinks she will make it to term.

I am humbled and thankful for all of the friends and even strangers that are keeping her in constant prayer. I cannot tell you how bathed in prayer this baby is - and we do really feel the hand of God at work in her. She will make an impact on this world whether she is with us for minutes, days, or years, and for the first time in this pregnancy, I have truly allowed myself the HOPE of being able to hold my baby girl alive and spend time with her.

Thank you to each and every one of you sharing this journey with us, encouraging us, grieving with us, praying with us. I feel very blessed and loved. Please continue to pray for a miracle, that we will be surrounded by godly and compassionate medical staff that have a respect for life and our choices as the parent of this baby, and for me to actually be able to breastfeed Rebekah (I don't think this has ever been done with a trisomy 18 baby!).


Numbers 6:24-26
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.

Psalm 139:13-18
You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous - how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can't even count them; they outnumber the grains of sand! And when I wake up, you are still with me!