I want to start today by saying something that I think about all of the time, but I'm not sure y'all get to hear it enough.  Each and everyone of your posts, comments, messages/e-mails mean SO much to us and they most certainly don't go unnoticed or unappreciated.  It blows my mind how God has used each and every one of you at some point and time to encourage us with just the words I need to hear at just the perfect time.  Some of you I haven't talked to since high school, some are parents of friends, friends of family & friends of friends that I've never met personally, some are old room mates, sorority sisters, church family, co-workers, school friends, our decorators, etc.  I have found that, contrary to what I envisioned, I don't have as much time as what I would like to respond personally and promptly to each and every post or message, but I want you to know that your words of encouragement and prayers have been much of the fuel that gets us through each day.  So, THANK YOU for taking the time to bless us with your words and please keep them coming because they matter :-).

Grace has been a resident of the 15th floor since Wednesday!  What makes the 15th floor different than the ICU?  She is no longer hooked up to ANY monitors (more on that in a minute!!!), she no longer has a dedicated nurse (her nurse now is responsible for 4 babies) and she has to have someone there with her 24 hours a day since because she is in a private room (with a bathroom and shower in it :-).  This floor is suppose to be a transitional floor, so (Lord willing) the next step should be... home!  Grace is doing great with her new independence, she is just working on learning to eat "safely" (without aspirating into her lungs).  She is mostly fed by the feeding tube in her nose, but OT comes in once a day to work with her on proper sucking.  The good news is that she is very interested in eating from the bottle and she loves her pacifier, so sucking isn't the problem, it's just a matter of getting her vocal cord muscles stronger (specifically on her left side), so that all of the milk goes down the right way.  She has another swallow study (where they watch her eat different consistencies to see if she's aspirating) scheduled for Thursday.  Please pray she passes this test with flying colors because this eating thing is the key to our discharge (which we are eagerly awaiting).  Since one of us has to be here 24 hours a day, it has required David and I to split up a lot and that isn't our strength.  Since we were 18 years old we have pretty much spent every waking moment possible together, so the lack of family time has been some what tough and it's only been 4 days.  This past week has been especially trying because I'm pretty sure God's plan was for our family to have every sickness possible run through our house before Grace gets home (since it's so important for her to stay as germ free as possible).  This past week consisted of Abby having pink eye, Andrew and my Mother in love having a stomach bug, and ALL of us having this annoying cough.  By God's grace the only person that has stayed healthy is David.  Please pray that he remains healthy because he is the one who spends the most time at the hospital.  We decided that it's easiest on the kids if I'm home to put them down at night and get them off to school in the morning, so that means David's health is key to making sure Grace stays as germ free as possible.

The Lord has put so much on my heart since the last time that I posted that I want to share with you, but I'm just going to share with you what He put on my heart this morning during my quiet time (in the car by myself on the way to the hospital :-).  So, Grace being off of all of her monitors is a very exciting step because it means that she's that much closer to coming home, but I have to admit that it has also been a mortifying experience for me!  For the first 4 and a half weeks of her life I became use to being able to look at all of the numbers on her monitor in order to see how she is doing. I knew instantly what every number and beep meant and it gave me a huge sense of comfort.  Now that she is monitor free, I feel uneasy because I can't see what's going on inside of her.  I'm learning that I'm going to have to trust God to be my "monitor."  I pray that if there is something to worry about that He will make that clear to me, but if my worry is not warranted that He would give me His peace about it.  This analogy reminded me of how we all have "monitors" on...  The things we use as our "monitors" to measure how well we are doing in life could be friends, media, work, ministry, our social calendar, success of our kids, etc...  When one of those "monitors" begins to beep because something isn't right by the world's standards or our own vision/desire we have the tendency to sort of freak out.  I know that before Grace was born, my "monitor" was beeping so loud that it broke my heart when we found out that our babies heart was broken and that she would not be perfect in the world's eyes.  The beeping of my "monitors" meant that our lives would never be the same, we would be "different" than all of our family and friends, etc.  The lesson that God has taught me through all of this is that He is the one who created me, sent His son to die for me (and you :-) and loves me more than anyone else, so I need to take off all of my other "monitors" and let God be my one and only "monitor."

                                                       Here is our monitor free Kitty!!!

 How precious is Daddy and Gracie trying to catch some shut eye whenever and wherever they can?

 

A sweet treat this morning...

So, you now know how gut wrenching the morning walk up to Grace's hospital room can be, since we never know what we will be walking into.  Will she look good or will they be working feverishly on her because something has gone wrong...

This morning God gave me a sweet treat.  As I walked into Grace's room, the sunlight was shining beautifully through her window, illuminating our little angel sound asleep like this...

What makes this sight so special is that she is on her tummy for the first time ever (I had never seen her back before- I know that doesn't sound like a big deal, but it meant so much to me for some reason:-), she isn't on oxygen anymore; the huge sticker on her forehead (measuring the oxygenation in her brain) is gone; she is being fed milk through a feeding tube (for the majority of her life so far, she has been on just TPN and lipids); and she was sleeping as peacefully as can be!

Today was a great day!  Thank you for praying Kitty through this past bump in the road (and all the other bumps along the way).  Her Dr's are happy with her vitals and were just waiting to see how her tummy was going to handle the milk because, as of this afternoon, she was digesting the milk very slowly.  I'm so happy to report that after a long day spent squirming around, pushing, and grunting her determination paid off... she pooped!  I hope that doesn't gross you out too much because this is the type of stuff that makes this Momma happy and grateful!  One of the things that I'm most grateful for is that we serve a God that cares about poop (you must think that I've really lost it now)...  but really, I love that I can cry out to God about any and all of my concerns, no matter how trivial they may seem.  Her Dr also mentioned that she may be able to move to the 15th floor (no longer ICU) sometime at the beginning of the week (that is one step closer to bringing her home :-).  Our prayer request at this point is that there are no more bumps in the road, that she can eat by mouth soon and without any complications, and that her blood pressure remains good.  When we just called to check on her, the nurse said her last two blood pressure readings were high, but she's about to get a dose of her blood pressure medication, so hopefully it goes right back down.  THANK YOU for your fervent prayers!  

Kitty is ready for Disneyland!  

Feeling broken this morning...

One of the hardest parts about the last three weeks since our little Kitty has been born is the uncertainty of everyday...  When we go into to the hospital to see Grace in the morning I never know what we will walk in to or when we call to check on her in the middle of the night, I never know what kind of report we are going to get.  As I mentioned before, it feels like we take 2 steps forward and 3 steps back... at the end of last week her blood pressure was high and that was a concern, now this morning I find out that her blood pressure is too low (45/20 ish) and so they are trying to figure out the cause.  They were doing an echo when I called to see if there has been a decline in her heart function and we were told when we called in the middle of the night that she was very agitated and couldn't be consoled, so they assumed it was pain and had to give her morphine.  That alone kills me to hear because our little Kitty really only fusses if she has a dirty diaper, so what ever was causing her discomfort must have been pretty bad.  I know that God is not surprised by all of the turn of events that have taken place, so we will continue to rest, trust and hope in His perfect power, peace and provision.  Will you please pray that we feel God's embrace during those times when we are tempted to doubt and fear.  Please also pray that Kitty's heart is functioning stronger than ever and that the low blood pressure is due to something easily fixed like the tweaking of her medication.

As I was driving home a few minutes ago, I saw a man mowing his lawn very slowly and as I got closer to him, I noticed that he walked with a significant limp and it appeared that his left arm was immobile as he carried it close to his chest.  I was amazed and so proud of him for serving his family by mowing the lawn even though it took him far more time and effort than it takes most able bodied folks.  He had to steer the lawn mower with one hand while trying to keep his balance due to his limp.  I felt like he was the perfect visual for how I feel this morning.  I'm limping along, barely getting the job done (for me it's not mowing the lawn, but instead trying to serve my family well in this time where I feel like I'm being pulled in all different directions, while seeing one of my little angels fight for her life over and over again), but in my pain and exhaustion I'm reminded what God says in 2 Corinthians 12:9 "My grace is sufficient for you, for my power is made perfect in weakness."  Then Paul goes on to say...  "Therefore I will boast all the more gladly about my weakness, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong." I'm grateful that I don't have to do it in my own strength because my Heavenly Daddy is all powerful and can never out love or out give me (or you :-).

Thank you for your prayers this morning, I really need them :-)

Happy Kitty...

The past two days have been such a joy with our sweet little Kitty (also known as Gracie doo).  We call her Kitty because she makes the cutest little kitty noises and she enjoys when we gently stroke her neck.  So, Kitty got her breathing tube out early yesterday morning and ever since then she has been SUCH a happy baby (Praise the Lord!).  While she had her breathing tube in, anytime she was awake she was miserable... moving her head side to side, turning bright red and crying real tears, but you couldn't hear anything because she had the breathing tube in, so it was like someone had pushed the mute button.  Let's just say it was heartbreaking for David and I to watch, so the past two days have been a sweet treat.  She was awake most of the day yesterday and just as content as can be (as if she was hibernating for the past 2 and a half weeks and just woke up for the first time).  Today she was also very happy and content, however she slept a lot more than yesterday....  UNTIL, Abigail and Andrew came to visit her and she perked right up. Before they arrived, she could barely keep her eyes open for a second, as I was trying to wake her so that she could meet her Papa (my Dad) for the first time, but one of the sweetest things to witness is what happened to Grace when she heard her brother and sister's voice.  Her eyes sprung open and she barely blinked the whole time they were there.

In terms of Kitty's progress, she is on a very low setting of oxygen and her stats all look pretty good.  Her blood pressure is a little high, so they are increasing her blood pressure medication and we are waiting for the left side of her vocal cords to recover from surgery.  During surgery, they had to move the main nerve that controls the voice box and feeding (sucking) to get it out of the way so that they could work on the heart and that nerve can easily get injured or irritated when being moved.  Occupational Therapy is coming by on Monday to work on eating from the bottle, will you please pray that she learns to eat well and quickly?  Please also continue to pray that we don't hit any other bumps in the road and that the left side of her heart will continue to grow and astound the Dr's, giving God all the glory! Thank you!!!

Post surgery update...

I apologize that I haven't posted an update sooner, as you can imagine things have been a little hectic:-).  Grace did great during her 6 hour surgery!  The procedure they ended up doing required her to go on heart and lung bypass because they did a full (aorta) arch repair and they also put a pulmonary band on her pulmonary artery to restrict blood flow to the lungs (to avoid too much pressure in the lungs).  The Dr's have said that the first 2 days after surgery are the most critical and so far (by God's grace) she is doing well, in fact she is breathing on her own.  They are hoping to extubate her (take her breathing tube out) sometime this evening/tonight.  She will remain in the CVICU until she can prove that she is stable enough to move down to the 15th floor (which will probably be through the weekend).  Once she is moved to the 15th floor, David or I have to be there with her 24 hours a day because we will be in a private room and the goal is to prepare us to take her home.  We are hoping that we could have her home within the next 2 weeks (Lord willing of course)!  Will you please continue to pray for a quick recovery and no surprises/complications?

Our cup runeth over with emense gratitude for all of your love and support the past 2 weeks in the form of fervent prayers, meals, play dates, the best carpool ever, hospital visits, money for gas, etc.  I have to ask for your forgiveness and grace for not having sent out thank you cards yet, I just haven't had a free moment thus far.  I'm praying that in the mean time, God will allow you to feel as blessed as y'all have made us feel.  Also, I would love to know how I can be praying for you too, so please send me an e-mail (k_askin@yahoo.com) or facebook message letting me know how we can prayerfully support you too.

To God be the glory!!!

Proverbs 3:5-6   
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."

We got to have some family time with Grace today after church AND..... we got to hold her again :-)!!!

Here are some pictures from our pre-surgery party...  the stickers on Grace's face in the 2nd picture were there from when she had the c-pap machine on (they like to leave them on for 12 hours after coming off of it in case they need to put it back on, but luckily she got them off just before Abby and Andrew came up to see her).

As long as Grace's labs continue to look good, they will proceed with surgery tomorrow morning, so please pray that she stays "well", that her surgery is a success and that she recovers quickly.  We are trusting in God's perfect provision for what is going to be a pretty scary day tomorrow.  Thank you for praying us through this!

Details of our meeting with Grace's Surgeon...  This is the e-mail that David sent to our church family with the details about our meeting with the Surgeon this morning.  I'm pretty emotionally and physically drained right now, so my brain isn't really firing on all cylinders, that's why I'm just posting David's e-mail.  One of my dear friends had a perfect analogy for how y'all are are being used by God to lift us up during this time, she said, "Remember in Scripture how Hur and Aaron held up Moses' arms while the Isrealites were fighting?"  I want to thank everyone for lifting our family up in prayer while we are in this battle.  I wish I could reply personally to everyone's post, but please know how much your encouraging posts mean to us.


The surgeon met with Kristi and me this morning (Saturday), in order to discuss Grace going into surgery on Monday morning and the possible details of her surgery.  The only thing that will cause Grace's surgery to be delayed is if she has or develops an infection before the surgery.  She had a rough day yesterday and the doctor's were concerned that she might have an infection, but the initial results from some of the tests they conducted have come back negative for an infection; however, her white cell count is slightly high and if that continues to go up, then they might have to hold off on surgery until they can figure out why that is going up.  
 
            -Please pray for no infection, so that Grace is able to have her first surgery.
            -Please pray for peace and patience for Kristi and I on Monday (as the surgery will begin around 8:30am and not be done until late afternoon or early evening)
 
The surgeon did state that there is a 20% chance that Grace will not make it out of surgery and a 10% chance, assuming she makes it out of surgery, that she might not make it to her second surgery in 4-6 months.  
           
            -Please pray for God to strengthen and protect Grace during and after her surgery.
 
The surgeon stated that they are pretty sure what Grace's surgery will entail on Monday, but they are never really certain until they open her up and see first hand whats going on.  He also stated what the future procedure(s) usually entail for children with Grace's heart defects, which ultimately comes down to whether or not Grace's left side of her heart is big enough to function in pumping blood to her body, or if her right side (which usually pumps blood to the lungs) is going to have to do all of the work for her body and her lungs.  However, he also stated that since Grace has Down's syndrome she might not be a good candidate for some of the procedures that they would normally perform because Down's kids tend to have something different going on in their lungs and are less able to sustain some of the third surgery procedures. (I apologize, I am sure that was too confusing and too much information).
 
            -Please pray for God to continue to grow and strengthen Grace's left side of her heart (which the surgeon did state is possible)
            -Please pray for God to provide wisdom and guidance for the surgical team on Monday
            -Please pray for strength for Kristi and me as we seek to keep our eyes focused on God and in the present, not being concerned about what   tomorrow brings

Tentative surgery date!!!

Grace is tentatively scheduled for surgery on Monday and we are meeting with her Surgeon (Dr. Hinely) tomorrow morning at 9:00 am to find out exactly what the plan is...  We are still waiting to hear about the culture results because that could delay surgery if it comes back that she has an infection.  Lord willing she is suppose to get the annoying c-pap machine off tomorrow, which is the source of a lot of her discomfort and frustration right now.  Will you please pray that she does not have an infection, that they can take her off the c-pap machine sooner than later and for wisdom and skill for her Surgeon?

THANK YOU!!!

2 steps forward and 3 steps back...

When we got to the hospital this morning we learned that the Dr's were concerned that Grace may have an infection because of a chest x-ray, decreased blood pressure, she's working harder to breathe, her feet were cold, a mildly elevated temperature and white cell count.  They have taken cultures, so we are waiting on those results.  They are thinking the change in stats could be one of two things...  an infection (which we are praying that not be the case because that will delay heart surgery even further) or a sign that she is ready for her heart surgery.  I have to admit that I'm emotionally and physically drained today because it zaps every ounce of energy that I have when I have to see hours of my little sweetie being poked, prodded, and so incredibly uncomfortable (she is on a c-pap machine to help her lungs breathe more easily and it looks terribly uncomfortable in conjunction with a tube in her mouth that I can't even remember at the moment what it's doing).  She has been more fussy today than I have ever seen her :-(. I would post a picture, but I can't imagine anyone wants to see a baby with tubes every where, it's no fun.  Today, I have been reminded of what our Heavenly Father must feel like as we are kicking, screaming, and crying because we are hurting and we don't know why it has to be this way.  I see Grace screaming and looking at me as they are sticking her with needles, ripping tape off of her baby soft skin, or running yet another test on her, as if to say "why are you letting them do this to me?" and knowing full well that there is no possible way to explain to a newborn that everything that is being done to her is for her good.  All I can do is sing to her while rubbing her head and neck in the way that I know she likes and pray that it will be over soon.  I just know that in our time of pain, God is looking at us (as his precious daughters and sons) with tears in His eyes, comforting us in the way that only He knows how because, like His word says, His ways are not our ways and His thoughts are not our thoughts.  We (like a sick newborn) can't possibly comprehend what God is doing, but we can trust that He is doing what He knows is best for us.  I'm grateful that we serve a God that knows how it feels to weep over a hurting child and that He will carry us through the most difficult times.  His grace is sufficient for us, today and everyday.

Will you please pray that Grace does not have an infection and that she doesn't have anymore problems creep up?  Please also pray for God's perfect peace and strength to carry us through today and those ahead of us.

On a side note, We are so very proud of Abigail, she got a "star student" award at school today (in the form of being the first one in her class to be able to take home Walter the Whale).  Her teacher has been such a blessing to Abigail as well as the rest of our family with all the love, genuine care, and support that she has lavished on us during this time.  Also, Andrew had his 2nd day of pre-school today and he went in like such a big boy (with not one fuss :-).  Praise the Lord for sustaining us all!

In case I haven't told you lately...  We love you all and covet your prayers!

Look... no breathing tube!!!  She is looking more like herself...  Thank you sweet Jesus!

I apologize for not posting an update sooner, but this has been a crazy week so far...  On Monday we joyfully came to the hospital at about 8:30 am and as I walked in to the CVICU I saw a number of Dr's around Grace's bed and as I walked over to her, I was MORTIFIED with what I saw.  Our little angel was the most horrific color of yellow that you could ever imagine and her tummy was huge (as if a soccer ball was in there) and extremely hard and it was clear she was in a lot of pain.  The Dr's were working feverishly trying to figure out what was causing the problem.  Finally, by mid morning they identified that one of the catheters inserted through her umbilical cord had punctured a vein and her liver (so all of the fluids, medication, etc that they had been giving her was being dumped into her liver and belly).  They ended up draining almost 800 mL's of fluid from her belly (that's a ton of fluid for such a tiny little thing).  You know it's serious when a nurse comes over to you and says "keep praying," another doctor used the word "critical condition" to describe the state of your 7 day old baby, and once they found and addressed the problem, one of the surgeons said "I think she's going to be ok, I wasn't sure before."  I couldn't bare to be in the room as they were working on her (especially when I would hear her cry), so David (the strong Daddy that he is, was not going to leave his little girl's side) stayed in the room through everything, while I went and sat in a rocking chair right by the elevators, outside of the CVICU.  I sat in that rocking chair, rocking back and forth listening to worship music, singing out loud (without concern for who could here me) and crying.  I'm sure everyone that walked by thought I had escaped from a psych hospital, but it is where I found God's peace...worshiping Him!  The verse Romans 8:26-27 has never been more real to me "In the same way, the Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit Himself intercedes for us with groans that words cannot express and He who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."  I couldn't even find the words to pray, so I just trusted that God knew my heart and thoughts and that the Spirit was interceding for me (what a powerful thing).  By God's grace the Dr's were able to identify the problem and address it (which is amazing considering none of the veteran nurses or Dr's had ever seen this happen)... Again, we should play the lottery with our odds :-).  Grace is certainly recovering from Monday's episode, but I have to say that we are super eager for her to be extubated because that breathing tube is miserable.  Today we are praying for a quick recovery of her liver and kidneys, that she responds well to getting her breathing tube out, and that she doesn't have an infection.

For my co-workers - they cultured the fluid from her belly and the gram stain grew gram positive cocci in clusters (that may sound like Chinese to some, but for my co-works it makes sense :-), so they are waiting for qualitative and quantitative results.  They started her on vanc and zosyn (despite my concerns about vanc) and sure enough her trough yesterday was almost 25 and today it's 17...  grrrr!  I guess another blessing from all of this is that I have become even more passionate about my job and what we do :-).

A few other blessings that came from Monday is that it showed me how MUCH I love Grace and want her!!!  I adore this child and everything about her ("up's" and all :-).  We were blessed to see the body of Christ in action, again.  The prayers, meals, love, and care for for Abby and Andrew have blessed us beyond measure!!!  I wish I could find the words to express our gratitude for all of your prayers, but since I can't I will pray and trust that God will some how show you for me.

Once Grace gets her breathing tube out, I will post more pictures...

"Faith is absolute trust in God- trust that could never imagine that He would forsake us" - Oswald Chambers

I love this quote...   Not only will God never forsake us, but I LOVE and appreciate that He chooses to bless us with sweet little hugs along our journey, reminding us that He is there, He sees and that we can never out love Him.  There have been so many little hugs along the way which I would love to share with you throughout this journey, so today the hug from God that I can't help but share with you is the blessing of a Mother-in-Love that shows up with a heart that is ready to serve as much and as long is as needed.  She cooks, cleans, does laundry, runs errands and loves on our kids (she is a school teacher by trade, so she's got a great imagination...  Andrew can't get enough of putting that imagination to good use :) AND as we are rushing out to the hospital she even asks "David didn't have any jobs for me, is there anything that I can do for you while your gone?"  I guess I should play the lottery because I got a phenomenal husband AND Mother-in-Love... just kidding, I know that luck had nothing to do with it, it is all God ;-)

Grace is doing great today... She got to eat/drink for the first time today (Phew, Momma's hard work is going to good use).  Up to now she has been just getting electrolytes, lipids, etc through a line because they didn't want to stress out her system (requiring it to work harder) by making it digest the milk.  Please pray that her system handles the milk with ease...  Thank you!  

Our tentative date for surgery (Tuesday) is still very tentative (it looks like we won't know for sure until the last minute).  We are STILL dying to hold her, they promised us that we could hold her before surgery...   I only got to hold her for about 2 minutes right after she was born and poor David hasn't had a chance to hold her at all yet (the reason being that they don't want to risk loosing the 2 important lines they have going into her umbilical cord). Check out this picture of our little angel eating for the first time and she has her eyes open...

AND... Abby and Andrew got to visit Grace again today...  They told her what they learned in their Sunday school classes and we sang her a worship song since Gracie couldn't join us at church today and then Abigail didn't want to leave without making sure to pray over baby Grace...

As always, thank you for your prayerful support!!! XOXO

Grace Astrid Ross (Astrid is Norse for divine power; both me and David are 25% Norwegian) was born on Aug. 27th at 8:40 p.m. weighing in at 6 lbs, 6 oz and 19 inches long. Today (Sept. 1st) Grace is doing great (all things considered :) in the CVICU at Texas Children's Hospital. Everyone here has been absolutely amazing from the nurses to the volunteers, etc. At this point it looks like her surgery may take place on Tuesday. We were previously told that it would be on Wednesday, but for scheduling purposes (not because it is urgent at this time) they may be moving it to Tuesday. We have quickly learned that things are very fluid around here, so we continue to rest, trust and hope in the Lord! Your prayers mean more to us than words could ever begin to express, so it is with humble and grateful hearts that we ask that you please continue to cover us in prayer throughout this journey. Here is how you can be praying for us right now...

-that we could balance our time in a way that all of our kids feel loved, secure and treasured (especially with so many big life events happening at once)
-that our marriage would continue to stay strong (with our eyes focused on the Lord)
-that Andrew would have an easy and smooth transition into his new class, especially if we can't take him for the first couple of days because of Grace's surgery
-that Abigail would continue to thrive at and love Kindergarten
-that we would be bold in seeking out opportunities to encourage, pray for and point the other families in the CVICU to our gracious heavenly Father during a time of such fear and uncertainty
-that our quiet time wouldn't be compromised during this chaotic time
-that EVERYONE that is helping us out during this time would be blessed and know how much we love and appreciate them
*** that Grace would blow the dr's away with how well she is doing before, during, and after surgery and that she needs the least amount of intervention and surgeries possible

 THANK YOU!!!

 “The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him." Nahum 1:7