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 :-)

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!