Thursday, October 25, 2012

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...

Monday, October 22, 2012

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

Saturday, October 13, 2012

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...

Tuesday, October 9, 2012

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!

Friday, October 5, 2012

Date night at the hospital...

I never would have dreamed that a date night at the hospital could be so fun and special!  Abigail and Andrew are having a slumber party with my Dad and Karen, while David and I spend the night at the hospital with Grace.  It has been a week and a half now that our family has been split up and I have going to bed alone, so this is a sweet treat and I don't want to miss a second.  Here is a quick update on how our tough little Kitty is doing...

From a Cardiology stand point, the Dr's are very pleased with how she is doing and now we are just working on Grace's feedings.  She is certainly interested in the bottle and has a great suck, however based on Thursday's swallow study, they identified that out of 7 different consistencies that they tested, Grace aspirated on the first suck of all of them (but only on the first suck), except for the formula and rice cereal in a slow flow nipple.  We are working with her on drinking this concoction and hoping that she can work up to taking all of her feedings orally, however it is difficult because it takes a lot of work to get the milk out and they only give her 20 minutes to eat as much of it as she can because they don't want her to burn to many calories eating.  She then gets the remainder of her feeding with breast milk through the tube in her nose.  The Dr's have said that she should be able to come home next week, the question is, how will we get her feedings in...  Will she need a temporary feeding tube in her belly, stick with the one in her nose or will God perform what feels like a miracle and allow her to go home with all oral feedings?  Obviously I have a preference on how I would like things to look, however I'm fully submitted to God's will, trusting that He knows whats best for us and as I've been reminded over and over again, His will is usually not the "easy" road, but it is a good one!

                                               
                                               Thanks Mrs. Elise for my pretty headbands!


On a funny side note, I have had a chance to resume running (not nearly as far, fast, and often as I use to, but it's a start :-) and taking weight lifting classes at the gym.  Yesterday during the weight lifting class, guess who I envisioned in my head as motivation for pushing myself?  Not the instructor, some buff actress, etc...  it was none other than Abigail!  She is so tough and has some serious muscle tone (all thanks to her Daddy's genes). If only my arms and legs could look like my 5 year old.  Check out her arms and shoulders...

This is her doing pull ups in our backyard after gymnastics class (in case you are wondering, she fell in love with that VERY colorful leotard and of course Nana Lu Lu had to get it for her :-)