Sunday, December 23, 2012

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...

Thursday, December 13, 2012

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...

Tuesday, December 11, 2012

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.

Monday, December 10, 2012

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 :-).