Merry Christmas and Happy New Year!

We didn't get our act together in enough time to get Christmas cards or birth announcements out this year, so we did an e-Christmas card/birth announcement instead :-).  It has been impossible to try to get the pdf file to attach or copy and paste here, so here are the pictures from our Christmas letter and if I can ever figure out how to upload it here I will do so later...

 

Here are the dogs (Tucker and Twinkie) that have never made an appearance on the blog or a Christmas card since the arrival of Abigail, Andrew or Grace.

My next venture will be to try to upload the video from the Children's Christmas Choir performance at church last weekend...  Abigail did amazing and Andrew, well....  he was HILARIOUS, in typical Andrew fashion!  Stay tuned...

Liver results...

Thank you, Kristen L., for reminding me that my prayer warriors are still praying for and waiting on the results from Grace's ultrasound on her liver...  I love and appreciate you girl!

Grace's liver Dr called me today and said they are still unsure why her liver enzymes went through the roof after being discharged from the hospital (she agreed that it could have been associated with the vaccinations that she got just prior to her blood being drawn), but they are pleased to see that the numbers are coming down.  Her ultrasound showed that the spot on her liver which was injured (during the scary central line episode when she was a week old) continues to get smaller (meaning it appears to be slowly healing itself) and the other concerns that they had (sludge in her gallbladder from getting TPN for a month while on the hospital and some issue with a duct, etc) all appear to be fine, so PRAISE THE LORD that at this point her liver looks like whatever was wrong is getting better.  Please pray for full healing of her liver, so that we can scratch that off of our list of specialist to see :-).

I forgot to mention in my previous post (maybe because I was in denial and just came to reality :-) that it sounds like Grace will have her second heart surgery at the end of February or early March.  I have to admit that I came away from the cardiology appointment feeling a little beat up, but I've found something that brings me joy and peace (aside from spending time with the Lord and getting  into the Word) and that is simply loving on Grace.  Much like when we got the prenatal diagnosis that she had heart defects as well as "Up's", I would have bouts of sadness or discouragement and David would remind me that I was seeing Grace as a "diagnosis" not our daughter who was precious and fearfully and wonderfully made by hour Heavenly Father.  He was so right! The same thing can happen now after a Dr tells me that something else is wrong with our baby or when you hear that what you were dreading may be a reality.  I can find myself focusing on the what if's and getting discouraged all over again, but the smallest dose of Grace's precious smiles and cooing takes my eyes off of the "diagnosis" and puts them back where they belong, seeing Grace through God's eyes (the perfect (for us) little angel that she is).  It's pretty amazing how God can give us peace about the scariest of situations... remember I told you about the sadness that comes with thinking about the possibility of having to bury Grace?  Yesterday, I realized if that be the case, maybe it is God's way of protecting her/us, in that at least we would know that she was home safe with Jesus (Lord willing of course :-) and would not have to worry about who was going to care for her after our passing, how she might handle losing her parents, etc.  My point being, I have once again been reminded that God's ways are not our ways and His thoughts are not our thoughts, so instead of being fearful and burdened about the unknown, I can rest and trust in Him!  Some of us are slow learners and need to be reminded of God's amazing truth over and over and over again :-).

Andrew's cardiology appointment is scheduled for Jan. 4th and Grace's next appointment is Jan. 31st.  Please keep the prayers coming my sweet prayer warriors!  Thank you!  XOXO

I have a couple of video's that I wish that I could post, but because I'm a blogger novice I can't figure it out, so here is a recent picture of peaceful Grace just hanging out instead...

Got plans...

I put Grace in this onsie today to serve as a reminder to a powerful truth...and that reminder is exactly what I needed today...

Jeremiah 29:11 says "for I know the plans I have for you, plans to prosper and not to harm you, plans to give to you hope and a future."

Grace's marathon cardiology appointment (it lasted 4 hours) went well...  She was such a trooper as she had to get a blood pressure check on each arm and leg, oxygen levels, weight and height measurement, x-ray, echo, etc.  The praises from the appointment are that her cardiologist was very impressed with her weight gain, her numbers/vitals (blood pleasure and oxygen level), and the way she looked.  The part of the appointment that sort of got me down was hearing that the left side of her heart is still the same size (hasn't grown) and the cardiologist is still pretty convinced that she will be a single ventricle patient. However, last time they presented her case, some of the cardiologist and surgeons were split on how to proceed with Grace (single or double ventricle), so there is always a chance that when the surgeon reviews her recent echo and see's the results from the heart catheter that she will have done in early 2013 (where they put a camera in her heart to get a much more detailed look at what is going on in there), he may have a different opinion.  I asked a ton more questions about all the possible scenario's and I have a lot more peace about the single ventricle route, it is less scary than I previously thought (don't get me wrong, it's still SUPER scary, but maybe not as super duper scary as I thought :-).

Another part of the appointment that I need to give back to the Lord and not chew on it any longer has to do with some of the comments our cardiologist has made, past and present, about kids with "Up's."  When I asked about the mortality risk associated with single ventricle patients with "Up's" she basically summed it up with "well Down's people only live to the age of 30 years old anyway."  That statistic is very different from the one that David and I have researched that said, "Up's" peeps live to an average age of 55 (and I've heard stories of people that have out lived that statistic).  I know that adding her heart complications on top of that may reduce her life expectancy, but our God is not a God of statistics, so worrying and fearing about the future causes me to miss out on the abundant blessings right under my nose.  David and I have had very real conversations of there being a high likelihood that if one or both of us live long and healthy lives (into our 80's), there is a high probability that we may have to bury our little angel.  That makes me cry just typing it, but I know that we were never promised life.  Thankfully, God's grace is sufficient in all circumstances and His plan is not to harm us, but to give us hope and a future.  There are so many more truths that we will continue to hang on to, especially Mathew 6:25-34 (I know that you are busy, but I promise that you will be blessed if you look up these verses and soak them in :-).  I guess we can just pray that Jesus return's before we have to worry about any of the details regarding Grace's future, that way we can all go home together ;-).  Our next cardiology appointment is Jan. 31st and we will have the heart catheter sometime soon after that and then surgery some time after that...  We will keep you posted of course.

Andrew did an awesome job at his 4 year old check up today (so David says, I didn't go because I'm too weak to have to witness him getting 5 shots).  His Dr did still hear the heart murmur and she said that we could either keep an eye on it and see if it's still there at his 5 year old check up or she could refer us to get checked out by the cardiologist (since she knew that would probably ease Mom's concerns- she knows me too well :-).  Therefore, we will take him to the cardiologist sometime in early 2013; it will probably be the same cardiologist that Abigail went to as a newborn because they thought they heard something wrong with her heart when she was born (she turned out to be fine- PTL!). I'm telling you, we can't catch a break when it comes to ticker problems...

Will you please continue to pray us through our journey because I can't begin to express what an intregal part of our journey you are!  When you petition the Lord on our behalf, post sweet comments, or send a personal e-mail, text message, etc, it ministers to us in such a BIG way, I can't even find the words to explain it.  As I was driving today, I was thinking about how much I would love to send each one of you a personal Christmas card this year, detailing the things about you that are special to me and the things that you have said, done, or prayed that have blessed me.  I know it is highly unlikely that I will be able to make that dream a reality, since I can't even get a Christmas card together this year, but I pray that someday I can thank each of you personally.  Even if you just stumbled onto this blog and I have never formally met you, please know that just your interest in reading about our journey is a blessing to me, so I include you in my previous statements.

Update on Dr's appointments...

There is something about our new normal that I still struggle with and that's the butterflies, or bats I should say, that I get in my stomach when I see any of Grace's Dr's phone numbers appear on my phone...  for reasons such as this, two weeks ago on Friday I got a call from Grace's cardiologist saying that her lab results came back and there was something that she wanted to talk to me about, so to please call her back.  When I called her back as fast as my fingers could dial, of course she was busy and unable to take my call and the administrator said that she would try to call me back that afternoon or on Monday....  Ummmmm....  Momma can't wait until Monday!  Clearly God knows that, so by His grace she called me back that afternoon and shared with me that her liver enzymes came back super high.  Her normal had been around 20ish and continuing to come down since the scare that we had in the hospital when she was one week old (remember the central line in her umbilical cord that went through the vein going to her liver and lodged itself into her liver, dumping all of the fluids and meds she was receiving into her liver :-/?).  The Dr said that her labs now showed that her liver enzymes were over 400!  They weren't sure why, so they ordered a repeat ultrasound and labs.  Her labs came back and her number went down to 85-105, still not normal, but much improved.  Grace had her ultrasound today and while we don't have the results back yet (I get to wait until one of her Dr's call me), the tech doing the ultrasound told my husband that she didn't think there was anything to be concerned about.  PRAISE BE TO GOD!!!  We have a cardiology appointment tomorrow (Tuesday), where she will get an echo to see if her heart has grown any, etc.  Will you please pray us through this appointment?  We pray that if it's the Lord's will that the left side of her heart will have grown so much that both the cardiologists and surgeons agree confidently that she can be a two ventricle baby (up until this point there has been a divide in opinion with more people believing that she will have to be a single ventricle baby).  The difference between being a two ventricle and single ventricle baby is whether you have two pumping chambers (the way that a normal heart functions) or just one (which is a process that is pretty amazing in that they basically rebuild the heart to function with just one side of the heart doing all of the work).  The singe ventricle route is less desirable for multiple obvious reasons, but having "Up's" complicates it even more.  The single ventricle route is far more risky and requires at least one additional surgery (in addition to the one that she must have in 3-6 months from now- Lord willing).  The good news is that God is certainly big enough and powerful enough to heal her heart if that is what would bring Him the most glory, so if we find out that her heart hasn't grown and single ventricle is the Lord's will, it will be good because God is good.  Now, I didn't say easy or with out heart ache and many tears, but it will be good.

Andrew has his 4 year old check up tomorrow (which comes with a ton of shots- poor guy!).  Will you please pray that he is healthy and checks out well?  The last couple of times his Dr listened to his heart she heard a murmur, which can be common in boys around his age, but they should grow out of it, so if she still hears it at his 4 year old check up, she wants him to see a Cardiologist.  Please pray for no more broken tickers!  They are kind of important :-).

    "Thank you for lifting us up in prayer for our Dr appointments tomorrow!"


Another praise, we have had a ton of comments (the most recent ones from her ECI case worker and ultrasound people) that Grace is very wiggly (moves both of her arms and legs a lot) and is very curious and observant.  I'm not sure what they would expect her to be like, but we are grateful that she appears to be exceeding expectations from that stand point and that is praise worthy for sure :-).

Sweetness and chaos...

The past couple of weeks have been full of sweetness and chaos :-)

A few weeks ago we dedicated Grace at church and boy was it a tear filled event (tears of joy)!  It was special for a multitude of reasons, but some of the most significant ones include the sheer magnitude of what we were doing before God and our brothers and sisters in Christ.  Baby dedication is really an outward statement of our commitment and desire to raise our children in a home that knows, loves, and honors the Lord above all.  It is also a commitment by the congregation to come alongside of us (and all of the other dedicated children of course) and assist us in pointing our children towards Christ and being Christ like examples themselves.  I have always known that our children are a gift from God, simply on loan to us until He returns to call His people home.  I have also always known that God loves our children more than we ever could, so we can fully trust Him with our (His) precious treasures.  The reality of those two truths have never been more deeply felt and understood by me until we met our little angel, Grace. There was a time when, I'm embarrassed to say, I wondered if God was punishing us with a child that by the world's standards was "broken." In fact, we received the phone call from the geneticist on a Friday, just as David and I were heading out of town for a "baby moon" at a bed and breakfast.  I spent that weekend kicking, screaming, and feeling beyond fearful about what our future would hold.  While on our "baby moon" we wandered into an antique shop after lunch one day and I stumbled upon this...  God knew that it was the exact reminder that I needed every day (or ever minute of every day) as we waited until we finally got to meet Grace face to face.  Here is what it said...

Now I know the real meaning of this, that Grace (God's unmerited favor) is a gift from God, which it TOTALLY is!!!  However, to me this was a reminder that the baby in my tummy was not "damaged goods," but instead a GIFT from God.  When you think of the word gift I'm guessing that you (like me) think of something that you want and are happy to receive.  I had a hard time feeling like I wanted my baby to have a broken heart and an extra chromosome; however, I stood there in front of our church as we were dedicating Grace (crying of course) knowing with full confidence that Grace IS a GIFT from God...  a perfect gift that my Heavenly Father hand picked just for me!   As I looked out into the congregation to see so many of our family and friends with their hands raised in the air as a an outward commitment of an inward desire to love and support Grace and us as we raise her was enough to take my breath away.  It meant the world to us that we had some special people there to witness this special day too, my sister in love, Becca and Brian (her husband), and Cean (David's dear friend) and his amazing Father.  Another sweet treat was that some of our dearest friends were also dedicating their babies at the same time!

We also celebrated Andrew's 4th birthday on Monday!  This boy knows how to brighten anyone's day!  Here is a typical day as Andrew's mommy...  We went on a family walk/bike ride a few days ago.  David was helping Abby practice her bike (without training wheels), I had Grace in the baby bjorn and we were walking behind Andrew riding his bike.  We finally got everyone moving in the right direction and all of a sudden I see Andrew come to a screeching halt and start to get off his bike (mean while David and Abby are way ahead of us), so I start to ask Andrew what he is doing and try to tell him to get back on his bike and get moving...  until I see what he stopped for, there was a small patch of flowers just off the sidewalk so he was stopping to get Grace and I a flower (I should have known since he and Abby both always have their eyes peeled for flowers that they can pick for their mommy- SO SWEET!).  Andrew's sweet act was a great reminder to me that I (we) should all be willing to allow ourselves to be inconvenienced or distracted for the sake of showing someone else love and making them smile.  I'm trying to remember this lesson :-).  This is what a big, strong 4 year old looks like...

We almost had a Toy Story birthday cake for the 3rd year in a row, but Andrew picked a Despicable Me ice cream cake instead :-).  Andrew said that this was the "BEST CAKE EVER!"

Here is one of Andrew's very favorite things in the world to do...  wrestle his Daddy!

So those are a few of the super sweet times that we have had the past couple of weeks and the chaotic times are what goes on in my heart lately.  My heart hurts when I think about what will be coming 3-6 months from now...  Grace will be having her second heart surgery!  It certainly wasn't easy to see our newborn go through heart surgery at 2 weeks old, but there is something SO much more heartbreaking about handing her over this time around.  When she was first born, we didn't really know Grace yet and we hadn't experienced life outside of the hospital with her yet.  Now that we know her and have enjoyed so many sweet moments, days, and weeks with her at home (by God's grace) it kills me to think about her going through heart surgery again.  God hasn't left or forsaken us thus far, so we will continue to rest and trust in Him, but we would greatly appreciate your prayers for His peace and provision through this time as we wait to find out when she will need her next surgery, etc.  Will you please also pray that when Grace has her echocardiogram on Dec. 11th that her heart will have grown and looks healthy (so much so, that the Dr's are blown away by what they see)?  That is the outcome that we hope for, but our greatest desire is whatever will bring God the most glory.  Thank you for continuing to lift us up in prayer, it is truly what gets us through each day.  I wish there was a way that I could thank each of you personally, but until that is possible please know that as you read this, I'm thanking YOU for all of your love and support.

Here is a picture of the 2 youngest members of the "zipper club" (zippers acquired from heart surgery) in our family (Grace and her cousin Joe)..

Lastly, I loved being able to praise God along with you for the blessings in your life, so thank you for sharing those with me.  If anyone ever feels led to sharing a prayer or praise with me, know that it is truly my honor to be able to love and support you too (so don't hesitate to e-mail me or facebook me :-).

Praises...

"But the one who boasts must boast in the Lord." - 2 Corinthians 10:17

I have been meaning to boast on God for the past couple of weeks, sharing with y'all some simple blessings that are worthy of praise...

-In the past couple of weeks Grace had her first Cardiology and Endocrinology appointment and an in home evaluation by a Physical Therapist.

-By God's grace, her Cardiologist was very pleased with all of her numbers!  Grace will get an echo at her next Cardiology appointment in mid December where we will get a better idea as to what her heart is doing (is it growing, etc).  Will you please pray that if it's the Lord's will that the left side of her heart will show serious growth and great function? Thanks ;-)

While I was full of anxiety (trying to give it to the Lord) trying to figure out what was taking the Dr's so long to come back in the room to talk to us after reviewing her numbers/chart, calling her pediatrician to ask her some questions, etc (I was convinced that they were going to tell us that they needed to readmit her and move her surgery date up, etc)...  this is what sweet Grace was doing...  Just hanging out with a joyful smile :-).  LOVE HER!!!

-At her Endocrinology appointment we loved the Dr that she was assigned to as he was very knowledgeable, encouraging and commented several times on how great Grace looked.  Her lab work looked great, so they are keeping her on a tiny dose of medication for hypothyroidism.

-At her first PT evaluation the Physical Therapist said that if we didn't tell him that she had "Up's" that he wouldn't have known based on her muscle tone, reflexes, etc.  We are well aware that we are in the very beginning stages of this journey and I know there will be a ton more Dr and therapy appointments of which we may not always get news that we "hope" for, so we feel it's important to give God the glory for great news and put our hope and trust in Him when we get less than desirable news.  Today we will celebrate all of the great reports that we have received thus far!!!

A few more praises...

-I hope this isn't too much information for some of you (if it is, please forgive me...), I got a call from the milk bank at Texas Children's Hospital (where Grace spent her 6.5 weeks in the hospital) and they said that they still had 60 bottles of milk that they forgot to give me when we were discharged...  What!  It felt like Christmas!!!

-Grace FINALLY got her RSV shot yesterday!  It took me 3 weeks of making a ton of phone calls, etc to get it done, but I remain extremely grateful for great insurance and that it all worked out in the end.

-I have a new running partner that makes running SO much fun...

Yep!  My new running partner is my big Kindergartner, ABIGAIL!  She has run 2 miles with me twice now.  She could go much further I'm sure because she's hardly even tired after 2 miles, I just don't want to push her too hard.  I can only imagine what people think when they see us running together because she is 5 and a half years old, but as many of you know she is closer to the size of a 3 or 4 year old, so I hope people don't think that I'm abusing my child, but she loves it!  My favorite part about it is the unrestricted time I have to talk to her about what ever she wants to talk about...

-Andrew's smile ALWAYS blesses my soul...

This is a picture of the Pine Cove Family Camp brochure for 2013...  This was taken last year at Family Camp.  I love this picture because it is just a great action photo of the two boys in my life that know how to melt my heart.

-Abby and Andrew LOVE family bible study time so much that they are always asking us if we can do family bible study.  There requests serve as such a great reminder that we need to stop whatever we are doing (or thinking about all the things that we need to be doing) because nothing is more important to us than our family spending time in God's word together.

-We did our first Buddy Walk this past weekend where we celebrated Down's Syndrome awareness. Even though we kind of assembled our team at the very last minute, we were beyond blessed by our friends and family that came to walk with Team Gracie Doo.  I also praise the Lord that when we asked Abby and Andrew if they noticed any kids or adults there that had Down Syndrome, they both thought about it and couldn't think of anyone that looked any different than them.  Those of you who know me well, know that I'm all about team spirit (especially when it comes to our kids), so I can't wait for the Buddy Walk next year when we can do it full out fever :-).

We made it!!!  All of the kids (and babies) received medals!!!

-I was blessed to be able to go to a prayer and praise night with my sweet friend this week, where I cried tears of gratitude the entire time (gratitude for who God is and all that He is teaching me).  The theme of the night was "hope" which couldn't have been more perfectly titled for one of the main lessons that God has been teaching me over the past 6 months (beginning back at Family Camp when we had just learned about Grace's heart defects)...  more on what God is teaching me about "hope" at a later post...

***If you are still reading, thank you for staying with me and my long winded posts :-).  I know that each of you also have many reasons to praise the Lord for both big and small things (none of which are insignificant), so I would LOVE the honor of praising the Lord for His blessings in your life too.  Will you please do me a huge favor and post a quick comment (either here on the blog or on the facebook post) with a praise(s) from your week?  I know that posting on blogger can some times be annoying because it requires a couple of steps, but I would really love to hear from you if you have a few extra seconds...  or bypass the blog post and post on facebook :-).  Lastly, if there is some way that I can be praying for you, please send me a private message on facebook or e-mail me at k_askin@yahoo.com.

My sweet prayer warriors, will you please keep your prayers coming for Grace and the rest of our family?  We can always feel your prayers as they are what get us through each day.  We love and appreciate each of you!

Heartbreaking statistic...

There is a statistic that has haunted me since I met our sweet Grace face to face. I had read this statistic multiple times before, but for some reason the Lord has really broken my heart for this cause in a big way the past  few months...  Did you know that 92% of babies that receive an inutero diagnosis of Down's Syndrome are aborted?  Please just stop reading for a moment and let that sink in...  The thing that made this statistic so real to me, stopping me dead in my tracks, is hearing people say to me or my family members something to the effect of "that's great that you didn't abort Grace" or "I'm so proud of you for going through with the pregnancy."  It honestly never ever dawned on me that that is a very real consideration for people.  My heart breaks all over again every time I talk about this subject because I know so intimately the feeling of intense fear and disappointment that comes with the news that your child will not be "perfect" (by our earthly standards).  For the 92% of people that are overcome with that same fear and chose to terminate their pregnancy must mean they are unaware that God doesn't make mistakes and that His grace IS sufficient for us.  That means that enduring what feels like a miserable, impossible, or disappointing situation is not only possible with God, but He has a way of making those situations one of the most joyful journeys you could imagine (in a way that only God can do).  Don't even try to calculate or imagine how He can do that because He tells us that His ways are not our ways and His thoughts are not our thoughts (our little finite brains can't even fathom what He is capable of).  I know that this is true because that's what God tells us in the bible, but also because I have lived it during the past 2 months.  When Grace was in the hospital we saw her intubated, with a cpap machine on, go through open heart surgery, and so much more.  Through those 6 and a half weeks she was in the hospital, we just plugged along, some how finding joy each day (some days more than others :-) and weren't completely over come by the site of our daughter who was covered in tubes and hooked up to multiple machines and monitors.  As I was organizing some of the hospital pictures on our computer, I couldn't even look at the pictures of her with the cpap machine on because of how uncomfortable it must have been and how she must have felt during that time, etc.  I'm amazed that at the time that was our "normal" and God's measure of faith that He gave us, fit the exact portion needed to not just "make it" or "get through it", but to be able to find joy along the way (there is always something to be grateful for- you may just have to search a little (or a lot) harder and longer at times :-).
I apologize if this is tough for you to look at, I know it's tough for me...

In addition, my heart breaks when I think about the loss of a precious life, being made in the image of God (just like you and I), and the rich blessing those parents will miss out on.  I'm not saying for a second that it is easy, nor am I passing any judgment on those people who do choose to abort their "Up's" baby, but instead I want to hug them and share with them what my sweet husband and Sister's in Christ told me...  "we can do 'Down's' and we can do it well", "God only gives these special children to special people", "it will be hard at times, but it WILL be GOOD!," and one of my favorites "we don't 'have to' have a Down's baby, we GET too...we are the chosen ones!"  In case you couldn't tell, the last one was my coo coo husbands response right when we got the diagnosis.  I love his love for God's will no matter what :-).

I shared this with y'all because you are all sweet friends to me (whether I know you personally or not) and I pray that if you ever encounter someone who has received an "Up's" diagnosis that you might be able to better understand the extreme fear associated with the diagnosis and the hope that can be found in Christ alone.  I would love to talk to or pray with anyone that needs hope and support, so please let me know how I can serve you or someone that you know.

On a lighter note...  Here are a couple of pictures from our first Halloween as a family of 5!!!

 Abby and her best friend since birth, Ju Ju...

Grace with her new BFF, Noah...

2 month stats...

Grace had her 2 month "well check" dr's appointment yesterday and she did great!!!  She weighs 8 lbs 8 oz and is 21 inches long.  That puts her in the 5th percentile for "typical" kids and 50th percentile on the "ups" chart (they have a separate growth chart, milestone chart, etc for kids with "ups").  She also got her vaccinations and barely made a peep; I guess that was nothing for her compared to what she has been through!  She was also a great object lesson last night for Abby and Andrew when we took off the band aids that were put on after her shots.  Abby and Andrew are super drama when it comes to taking off band aids, so when they saw their little bitty Sister not fuss about it, I think they were inspired to be tougher next time :-).  While I feel much better that Grace has received her first round of vaccinations, I'm still anxious about GERMS!  Will you please pray for me?  You know you are a germaphobe when your husband comes home to a strange over powering smell in the house thinking that it may be carbon monoxide or something, causing him to then go into the garage and dig out the carbon monoxide detector that we got probably a decade ago and hooked it up to ensure we weren't in any imminent danger.  When I returned home and he told me his concern and how he handled it, I had to confess that no that wasn't carbon monoxide, but instead the result of a Mommy who LOVES Lysol spray! 

We were blessed with BEAUTIFUL newborn photos of Grace by Laura Popiel!  We have only seen one photo from the shoot so far, but I have to say that when I look at this photo it makes me want to cry with joy!

Here is Abby as a newborn...

And just so Andrew doesn't feel left out, here is one of my favorite pics of Andrew as a baby...

The Lord's prayer...

The Lords prayer has never meant more to me then during this season of my life.  I first learned the Lords prayer back in college when I would attend the church that David grew up going to in California.  It was a Luthern Church and they would recite the Lord's prayer in every service, so my initial reason for wanting to learn the Lord's prayer was a practical one...  so that I would be able to fit in and hold my own at his church.  I remember David and I sitting in the car one night while he taught me the Lord's prayer, so that I would be ready for church that Sunday.  Fast forward 12-13 years ...  It wasn't until the past month or so that I have fallen in love with the Lord's prayer in a new way because it is so simple, yet so profound.  As I have mentioned before, there are so many times I don't know what to pray because there is so much that feels so out my control from one moment to the next, so I have taken refuge in the Lord's prayer since God gives us the Lord's prayer as a model of how to pray (so, we can be freed from feeling like we need to come up with some fancy prayer) and it keeps our heart and mind focused on God, not on ourselves. Part of David and I's testimony has been experiencing the beauty of sitting in the center of God's will.  We have always said that it's "the best seat in the house."  We have experienced the beauty of this view when we have made big and small leaps of faith throughout our marriage, from moving from California to Texas, then to Indiana, and back to Texas; to David going to Seminary; to ministry opportunities, etc. Having a third child was another one of those huge leaps of faith as I felt the Lord calling me to trade in my comfort for His will.  During one of my many conversations with God, as I wrestled with why He was allowing us to go through SO much when I was just trying to be obedient, it was then that the Lord asked me a question that rocked my world...  He impressed upon me "You always say that you want my will, but do you still want my will even when it doesn't look "ideal" to you?"  I always thought that I wanted His will because I've seen first hand that His will is always better than mine, but how could His will for us to have a child with heart defects and Down's syndrome be better than my desire to have a healthy 3rd child (especially since I was being obedient in having a 3rd child to begin with :-).  Wow!  That sure sounds like I was trying to control God or control my life in such a way to "earn" God's blessings.  If someone would have told me that's what I was doing a few months ago, I would have thought that they were crazy.  I know better than to try to control God or my life...  It wasn't until I began reading the book "Pressure's Off" by Larry Crabb that I was hit square between the eyes, as I was confronted with the question, "Am I living for God's blessings or for true intimacy with God?"

How is it that some of the most influential people in the bible found true joy even in serious suffering.  Paul and John both were beaten and in prison at various times in their ministry and yet they found joy in all circumstances, even with failing health from being imprisoned and beaten, an uncertain future (or maybe it was certain- they knew that they would most likely die a martyrs death), isolation from the rest of the world, etc.  I believe that their joy came from the value that they placed on intimacy with God above anything else!  I'm learning that true intimacy with God really does trump any and all circumstances.  If you are someone that needs proof, just look at the numerous examples all throughout the bible, ultimately with Jesus being our best example.  If you prefer a tangible, present day example, look at my life.  I'm a born sinner who knows and loves Jesus, but still desires the "easy life" (even though David constantly reminds me that "easy" isn't good).  I wish you could see into my heart and mind so that you could see the mortified and heart broken person that I was when I found out about all of Grace's diagnosis' (especially "ups" syndrome) to the place that God has brought me (dragged me at times) in a couple months time.  I can honestly say that I think it's awesome that Grace has "ups" and I wouldn't change a thing about our journey.  Don't get me wrong, it's not like I have arrived and now I always experience true intimacy with God and don't desire His blessings or the "easy" life because it is still a constant battle, but I have experienced a radical change of heart, so now I know what I'm fighting for (in God's strength).

In fact I have full confidence that His will for my life has always included a 3rd child, named Grace, who has down syndrome and some heart defects.  I can already see how Grace was given to us to save us from ourselves, while touching the lives of so many others for Christ.  Her precious little life has humbled us and given us a new lease on life that sheds the desire to have the "good life," as Larry Crabb calls it, but to have a life that finds every ounce of joy in Christ and Christ alone.

Back to the Lords prayer...  I can honestly say that when I pray "Thy Kingdom come, Thy will be done, on earth as it is in heaven."  I actually mean it...  I really do want His will knowing that it probably won't be easy, but it will be good.  It is such a freeing feeling to release my clinched fists that are holding tightly to my will and desires and embracing God's refining, character building, and perfect will.  I am realizing the importance of not going over all of the "what if's" in my head (ex. What if Grace's left side of her heart doesn't grow and she has to have 2 more big surgeries), but instead, replacing it with "even if's" (ex. Even if Grace's left side of her heart doesn't grow we will trust God and it will be good).

A great test as to where our hearts have been throughout this journey is when we found out that Grace ALSO has hypothyroidism.  You see, I used to worry about my children's health down to the smallest detail.  How silly is this...  Abigail failed an eye exam at her 4 year old well check (thanks to the fact that Andrew was in the room for this test and distracting her so that she would frequently look away from the tv screen that was reading her eye movement, but that's a little brothers job after all, right?).  We had to go to the eye dr to have her eyes tested to see if she needed glasses, etc.  I was so sad and scared for her that she might need glasses as I thought about how inconvenient they would be for her to wear.  Would her eyes continue to get worse, would she get made fun of, would it impact her ability to play soccer or do gymnastics, etc.  RIDICULOUS, I know, but I was seriously worried about it.  Fast forward a year and a half to when our sweet Grace was born with a whole lot more going on than the prospect of needing glasses!  After weathering Grace's heart surgery and a number of scary bumps in the road, we found out that she also has hypothyroidism and would require medication for it for the rest of her life (Lord willing).  At some point David and I looked at each other and said hypothyroidism...  managed with a once a day dose of medication...  sweet!  No biggie!  It's amazing how my perspective has changed so drastically in such a short time.  At this point in my life, I can say bring on the glasses!  As a disclaimer...  I look at other kids with glasses and think that they are just precious, in fact there is something about glasses that makes the cutest of kids that much cuter, but for some reason when I envisioned the inconvenience of Abigail needing them, it invoked great fear in me.


Another sweet hug from God!  I began this post in the hospital the day before Kitty was discharged  and while I was in the middle of writing this post David walked into our hospital room with one of his dear friends, Cean, who he used to work with at DePelchin.  Cean has a pretty amazing testimony himself that, with his permission, I would love to share with you some time in the future.  David ran into him at one of the elevators in the hospital and when he and his Father came to our room to meet Grace he asked if he could pray for us and wouldn't you know that he prayed the Lord's prayer over our family.  It may not sound that profound, but it is those types of "hugs from God" that remind us that He sees, He knows, and He cares...


Here's what we have been up to since being home from the hospital...

                                 First play date with Noah Glass...

                                    Enjoying cuddle time with family...

Nana Lu Lu

Great G'ma Vee Bee

G'ma Crack (our personal Angel :-)

Aunt Becca (and Cousin Joe)

PAPA

My very favorite snuggles come from my Big Brother and Sister...

This is how I spend most of my time...  admiring Abby and Andrew

Homecoming...

                                                                    Check me out...

                                  To God be the glory, our family was reunited on Wednesday!!!

There is no question that our reunion was full of joy, but I have to say the enemy was busy launching attacks on us at every turn.  The morning started out with some minor inconveniences, such as running late getting out of the house to get Andrew to school and then to the hospital (things like something spilling on the shirt that your child is suppose to wear to school the next day, so having to treat a stain and start laundry at the last minute, etc), then the waiting game at the hospital before being discharged.  After the Dr's rounded on Grace and confirmed that we would be going home, the Fellow said that she was going to put in the discharge orders as soon as she was done rounding (which would have had us out of the hospital by noon at the latest, however she forgot to put in the necessary orders, so after having our nurse track her down (because we explained to her that we needed to be out of there by 1:15 pm to be able to pick our son up from school on time) she FINALLY put in the order and we were discharged at about 1:20 pm, still enough time to get everything downstairs and loaded into the car in enough time to get Andrew from school, so that we could surprise him with Grace in the car.  David went to pull the car up to save time, he was parked at the front of the hospital waiting for Grace and I (and a nurse that pushed a cart full of our stuff ) to come down and jump in the car, so that we could fulfill my beautiful vision of a sweet car ride to Andrew's school (and on the way, David and I could talk about all that we were going to do as a family when we got home, while praising the Lord all along the way for His goodness).  So, we quickly loaded the car up, said goodbye to the nurse, David jumped in the back so that he could sit next to Grace on the drive, I jumped in the driver seat and put the car into drive, when I noticed that the wheel wouldn't move and neither would the car for that matter....  wait for it, wait for it.....

Yep, we were OUT OF GAS!!! :-(

You see, the car said low fuel, so we planned to put just enough gas in the car to get home on our way to pick up Andrew.  What we didn't think about was that the place that David parked while he waited for us to come down was on a pretty steep incline, so the little gas that was there was sent to the front of  the tank causing the car to think that it was completely out of gas!  As you can imagine, my heart was broken that my vision of surprising Andrew at school was shattered, so I called my Mother in love in tears and had to ask her to go pick Andrew up for us.  Next, Superman, I mean David, sprinted about a mile to a gas station to buy a gas can, fill it, and sprinted back (which some how only took him about 20 minutes).  Meanwhile, Grace and I went to sit in the lobby of the hospital (so that we didn't roast outside) and I just sat there crying.  What happened next was just another one of those hugs from God reminding me that He is there, He see's, and that He has it all under control.  A security guard walked over to me and said, "Oh no, you're crying.  Are you alright?"  He proceeded to say "Jesus loves you and so do we, so please trust that God is in control and that everything will be ok!"  It wasn't long after that and David had returned with gas, put it in the car, and we were off.  Since I was still married to the idea of surprising Andrew we ended up putting Grace on our doorstep (in her carseat of course :-), while David and I hid and rang the doorbell.  When Andrew opened the door, he just saw Grace sitting there as he exclaimed "Baby Gracie!!!" It was even sweeter than I had originally pictured.  Next, we met Abigail at the bus stop with Grace in our arms and she was equally elated.  Since then, we have been enjoying time as a family while trying to keep Grace safe from being loved to death by her adoring big sister and brother :-).

The rest of the night did entail some frustration as we ran around trying to get Grace's medication filled (which one of them has to be compounded, so you have to take it to a special pharmacy), trying to find sterile water because that is what we have to use to prepare her bottles.  Who would have thought that almost nowhere sells sterile water and the few places that do require a prescription for it and it is pretty expensive for the quantity that we need?  We decided to boil the water to sterilize it instead, so coming up with a system on how to stay ahead of the need is what we spent time working out, but I'm happy to report that by God's grace, with a lot of prayer and with a Mother in love that is always willing to help strategize and make things happen, we survived and enjoyed a day that the enemy tried to squander.  God always wins :-)

Side note...  One of my (many) silly fears when we founds out that Grace has "up's" is that she wouldn't look like the rest of our family, but since the moment we met her, we can't get over how much she looks like Abigail.  In fact, the older Grace gets, the more she looks like her big sister.  These pictures don't do a very good job of showing the resemblance, but it's the best I could do in a hurry...  you get the idea though, right?

I'm so honored and grateful that God chose David and I to be Grace's Mommy and Daddy (and of course Abby and Andrew's too).  Grace is a gift from God that I didn't even know that I wanted and needed so badly...

Family time and one step closer to going home...

We had a sweet Sunday...  after church, the kids and I went to the hospital to see Kitty since the kids hadn't seen her in her new room.  The last time they saw her here, she was still in the CVICU and they couldn't hold her because she was still hooked up to a bunch of stuff.  This visit was much different, we all got to hang out in Grace's room as a family for over 5 hours (boy, how time flies when you're at the hospital).  The kids couldn't get enough of their little sister and getting to hold her brought them more joy than I ever dreamed it would.  Here are some sweet pictures from our family day at the hospital...

On Saturday, Kitty was taking 3 bottles by mouth and the rest of the feeds through the tube in her nose and by Monday she was doing ALL of her feeds by mouth and nothing through the tube in her nose, so today...

Grace is praising the Lord for His goodness!!!  "Look no feeding tube!"

Lord willing, we are supposed to go home tomorrow!!!  The kids know that Grace should be coming home soon, but they have no idea that it could be tomorrow.  My heart swells when I picture being able to pick up Andrew from school tomorrow with his precious little sister waiting for him in the car and then meeting Abby at the bus stop with Grace in our arms.  Will you please pray that Grace passes all of her final tests and that she is able to go home tomorrow in time to surprise Abby and Andrew?  Please also pray for our transition to having her at home.  While it is exhilarating to think about being together as a family again at home, it is also mortifying (to me, not David :-) to imagine having her home with "God" as our only and best monitor...surely, He is more efficient than any machines, nurses, or dr's, right?  He's our Creator, He's all knowing, He's all powerful and the epitome of love.  I trust that we are in good hands, however I could still use your prayers that He would give us wisdom and peace as we embark on this new journey of having all three kids at home with us!