Extubation Day

This is David posting, so if this post lacks the emotion and eloquence that you so frequently enjoy from Kristi's post, then just know that Kristi will be back in full-effect for future posts. Thank you so much for your prayers yesterday!  Grace had a much better day today, filled with many joyous events!  After waking up this morning, Grace had one of her internal lines that measured pressures on the right side of her heart taken out; she also had one of her arterial medication lines removed; then best of all, while the doctor's were doing their morning rounds, they walked into Grace's room and noticed that she was awake, so they decided on the spot to extubate Grace, removing her ventilator (Praise the Lord because when Grace was going through her withdraws yesterday, she would be squirming around which caused her to move the ventilator around in her throat and then she would get even more upset!!); she also was able to start taking food through the bottle today; and lastly, I was able to hold Grace for the first time since her surgery (I can't emphasize how awesome this is too much because I don't want Kristi to feel too jealous:)!

This is right after Grace was extubated!

Happy Daddy!

Again, I can't tell you enough how much we appreciate your prayers yesterday (and every other day as well).  In attempting to make this post as much like one of Kristi's as possible, I figured I would keep consistent by posting about a hug from God that I experienced yesterday.  In the midst of one of Grace's withdraw episodes yesterday, I just wanted to cry because she would glance at me, almost like she was waiting for me to help her, while in the midst of her little body twitching all over, her eyes rolling all over the place, gagging on her ventilator tube, throwing up, getting a fever, and there was absolutely nothing I could do to help her find relief.  It was terrible!  If that was too much information for you, I apologize (Kristi is much more sympathetic than I am, thus her filter operates better than mine).  Grace finally fell asleep (after receiving another dose of the medicine to ease her withdraws) and I walked over to the window to pray and after a few minutes I was about to erupt in tears and the chaplain poked her head in and had just stopped by to see how things were going.  What an amazing God we serve!  He knows that I am too prideful to want to reach out to someone at a moment like that, so He met my needs and humbled me by sending someone to me.  It is in these moments, where God transcends time and makes His imminence known, to a sinner such as myself, that I can do nothing other than praise Him!!

Rough day...

Today has been really rough so far, we could really use your prayers! Grace is experiencing serious withdrawal symptoms from the sedatives and pain meds that she's been on. She has vomited multiple times and is very agitated (jittery, looking all around, etc).  I know it's bad when David says "i'm glad you're not here to see it." While that statement confirms how heart breaking it is to witness our little angel in such distress, it is also a reminder that God has all of us right where we need to be (even though it's SO hard). Will you please pray for healing and comfort for Grace and continued strength for David to endure such a heart breaking scene. Please also pray for me.... I feel better after having had a really good cry, time of prayer and worship, but I could still really use your prayers :-).

I'm posting from my phone so I can't upload a picture of Grace with a cold wash cloth on her head as she battles these nasty withdrawals.  I will try to post a picture of our tough little cookie next post.

Thank you for investing in our family! We love an appreciate you!

Day 5 post surgery...

Grace was stable today and they are continuing to prepare her for extubation to take place tomorrow, or more than likely on Wednesday. They removed the line from her neck and placed a pic line (a line for them to administer medication and draw blood from) in her arm. They did this because she is such a difficult peripheral stick (rather than have to stick her a bunch of times and upset her, they opted for a pic line). They also took the line out that was measuring her LAP (left ventricle pressure) because her surgeon felt like people were treating a number not the patient (instead of looking out how Grace looks clinically and taking into account all of her numbers, they may have been making decisions based on one number on the monitor). Well, that's one less thing for me to obsess about :-). I use to ask David all day, everyday what her LAP was and he would even send me pictures of the monitor to prove that he was telling me the truth (of course I trusted what he was telling me, but a picture is worth a thousand words, right? :-)). David said that Grace is starting to move around again, since they took the paralytic completely off and are trying to allow her to wake up again, but with a different cocktail of medications that hopefully won't agitate her. Please pray for a smooth transition and successful extubation. David is getting so excited that she's moving again and closer to waking up. I feel like he's a kid at Christmas waiting to unwrap his big present... It's everything he can do not to get in that crib with her!

Oh! How I miss these two!!!!!!!!!!!

Day 4 post surgery...

Grace has had a good day today and at his point they are continuing to work towards extubating her tomorrow or Tuesday. Her nurse for the past few days (who has worked in the CICU at Boston Children's for 15 years) is convinced that Grace is going to go "kamakazi" (her words) and need to be weaned off of the sedatives and extubated all at the same time because she dislikes being intubated so much and therefore gets super agitated when the sedatives come off. This is the first day that our family is split up and I can't say that it's been easy. I miss not being able to see and touch Grace and sleeping next to David in a big way, but in God's strength we will get through this with a heart full of gratitude. I shed a lot of tears during worship this morning at church for a multitude of reasons... I was overflowing with gratitude for God's goodness, peace, and unmerited favor during such a difficult time in our lives and humbled that our God has experienced the heart break that a parent feels watching a child endure and even suffer. He not only watched His perfect Son endure suffering, but extreme suffering to the point of death. He could have easily reached down and plucked His Son off of that cross, cuddled him and healed His wounds, since that is the hearts desires of any parent when we see our child suffering (even if they are a big kid). If we had the chance to take away our child's suffering (even if it meant that we take the suffering on ourselves) we would all jump at the chance and yet God (who knows the most pure form of love possible), chose not to rescue His Son, so that we could have eternal life. That act of love blows my mind and makes Romans 8:32 "He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?" jump off of the page and into my heart. I worshipped today and wept because I know that I/we are not alone on this journey and that our Heavenly Father knows and sees our deepest heart ache and yet He has the perfect remedy, more of Himself! If our ultimate goal is to be as close to Christ as possible, "suffering" is a gift in that it gives us more of Him (the only gift that truly satisfies). I need more of Christ each moment because otherwise I don't know how I will be the parent that Abigail and Andrew need me to be here, while also trying to be the parent and wife that Grace and David need me to be from a distance. Please pray that the Lord would continue to strengthen David.  He misses Abigail and Andrew in a big way and while he loves being there with Grace, he hasn't been able to experience her joy and sweet smiles (because she's still knocked out), so he probably feels very much alone.  Thank you for letting me share my heart with you. Thank you for covering us in prayer! Your prayers have been felt as if they were a warm blanket, just coming out of the dryer with a fresh linen smell on a freezing cold day!


This picture brought me great joy today!  Our precious little girl looking less puffy and sweeter than ever.  Good thing she's still knocked out because that bee looking stuffed animal that they are using to prop up her tubes is scary!

Sorry this picture is side ways, blogger won't let me post the rotated version :-(

Day 3 post surgery...

Today was a LONG, but good day! I had to leave Grace's hospital room at 9:10 am (at the latest) in order to get to the airport in time, and thankfully, Grace's team finished rounding on her at exactly 9:10 am.

They were very pleased with how Grace was progressing and planned to remove one of her chest tubes and catheter, while trying to wean her off of morphine, in order to begin weaning her off the ventilator, in preparation for extubation. When they began weaning her morphine, she got very agitated/restless and moved around more than they were comfortable with because her body was quickly eating through the sedatives that they were giving her (which is common in children with Up's). So, it's a fine balance of tryng to allow her to wake up enough so she will breath on her own, but not so awake that she gets agitated and puts herself at risk of pulling out tubes by accident, etc. Since her episode of getting agitated, the pressure of her Left Atrium has been on the high side. Will you please pray that her numbers get back into a normal range sooner than later and stay there? THANK YOU!!!
I spent most of the day traveling home (which was pure torture not being with David and Grace OR Abigail and Andrew for most of the day) and was beyond blessed to turn the corner on the way to baggage claim to see Abigail and Andrew running toward me screaming "Mommy!!!!" each with a boquet of flowers flopping around in their hands! All that they wanted to do when we got home was snuggle, which was fine by me! I LOVE SNUGGLES!!!

Day 2 post surgery...

I'm always reluctant to post an update before the day is over because we know all too well that anything can happen, but glory be to God, Grace has had a great day so far!

It snowed last night and through most of the day today which was a sweet hug from God because we were able to enjoy the beauty of it from our hospital room, instead of having to be out in it...  Here is a picture of our walk to the hospital this morning as we passed a snow plow...

When we walked into see Grace, the numbers on her monitor looked great.  The plan for today has been to take off the muscle relaxer/paralytic (which keeps her from moving), but still keep her sedated (completely asleep).  They weaned her off of most of the cardiac meds, except for a low dose of dopamine.  She will start getting a very small amount of formula through an NG tube (the tube that goes through her nose and into her tummy) this evening.  Today has been a great day and we are praying that when we come in to see Grace early tomorrow morning, before I have to leave (to fly home), that she will be doing just as good or even better, so I can leave with the peace of mind that she is doing well.  Another hug from God came when we got back from lunch and found that someone had put a sweet little bow in Grace's hair...  It's the little things some times :-)

Two other God hugs have been just how AMAZING every single one of the Dr's and nurses that we have encountered here have been.  That statement alone doesn't even begin to do our feelings justice, so I will try to do a better job of putting into words what an incredible hospital this is at a later date.  The other hug has been seeing Grace's little movements and hand squeezes since they have taken her off the paralytic.  While they are all involuntary movements on her part, they still make us smile!

We were bummed that we had to miss Rodeo Day at Abigail's school today, but we loved and appreciated the pictures and videos that David's mom took for us!  Here is Abigail and her BFF Ju Ju...

Please pray for Andrew, he had the stomach bug last night, so he not only missed school today, but he has to miss a sleepover that he and Abby have been SO looking forward to for over a month.  They are going to reschedule it for sometime next week (since it will be spring break) when everyone is healthy, but it breaks our hearts that he was so let down.  Please pray that it was just a 24 hour bug, nobody else gets it, and that both him and Abby will have a great night and day tomorrow, even though they aren't having a sleepover with some of their favorite people.  We can't leave out the best big and little Brother ever, so here is a picture of Andrew at his rodeo day last week...

Day 1 post surgery...

Please forgive me for not posting sooner today, our computer ran out of battery (David was busy doing school work whenever possible today) and we left the charger in our hotel room.  Grace is doing well.  She is still intubated, heavily sedated, on paralytics, and giving her Mommy heart attacks :-).  It didn't take long for David and I to be reminded of what a roller coaster ride it can be in the CVICU after major open heart surgery.  Things can be fine one second and not so fine the next... For instance, as her Dr's and nurses work to get one number under control (like her heart rate or blood pressure), one or two other numbers go out of whack.  This is all a normal process of recovery, but it doesn't mean it's easy for Mommy and Daddy to watch.  Praising God again for allowing David to stay with Grace while I go home to be with Abigail and Andrew (who we miss to pieces!!!!) because if I had to be at the hospital alone with Grace (riding the CVICU roller coaster alone) I might need heart surgery myself :-).  Please keep the prayers coming for Grace's numbers to all even out and that the left side of her heart and valve will be able to take on the additional work load and GROW!  Thank you prayer warriors!!!

Another part of our adventure is the fact that we stand out like a sore thumb here in Boston...  Surely people look at the way we are dressed (especially David) and think "CLEARLY they aren't from here..."  This is what David wore yesterday in 30 degree, rainy weather (we were just entering the hospital after walking outside)...

Here is what he wore today in 30 degree, windy and snowy weather (my light fleece sweatshirt)...  You will notice he's squinting because we discovered that it is uncomfortable when snow pelts you in the eyeballs :-)