Wednesday, January 30, 2013

We're coming home...

Well, we are heading home from ACH tomorrow. We met with many people today exploring options for Parke. The consensus was that there is no viable option for "fixing" him. The surgical team and the cardiologists met today on his case, and our doctor expressed to us (with tears) that less than 1/4 of them were in favor of moving forward with anything other than palliative/comfort care. We were sad, but also thankful for clear direction. We know exactly where Parke is going, and he is beating all sorts of odds by being here and this healthy. We will take each day we are given and celebrate...and give glory to God for allowing Parke to bathe us with his sweet love and presence. He is truly a gift to our family, and I am forever changed by being his mommy. 


So, tomorrow we will return home. We will continue to do what we were doing before...loving him and acting as normal as possible. We will bring Landry and Collier back home and be a family. We will take each day as it comes and move forward caring for him and keeping him comfortable.
Parke is still eating and breathing on his own. He is showing internal signs of failure with a few leaky valves, low pump function, enlarged heart, and a few more, but outward he still looks totally normal.
I don't know how to express the love I have for Parke and the peace I feel knowing that he will not suffer in this lifetime. He has not even been poked with an IV, and I am so thankful for that. He is so very loved by many, and his short presence on this earth has already been miraculous.
We were given some information today that I am confident Parke will decide to beat. One of the surgeons we met with told us that there is a 0% chance that Parke will live another 3 weeks. I could feel his ears perk up and say, really?! :) I hope he can continue to defy the odds, but I pray continuously for God's will to be done. In his perfect timing, Parke will be fully healed. 

Tuesday, January 29, 2013

Day 1 Hospital Update

We have had a long day in Little Rock. We have accomplished some, but not all that we expected to get done today. We met with the cardiologist late this morning, had a new echo performed, met with the cardiologist again, etc. We are now waiting to meet with the surgeon tomorrow at some point to continue to determine if surgery is actually a viable option for Parke. We thought we were going to meet with him tonight, but as of 7:00 this evening, he was STILL in surgery and had been for 11 hours. I cannot even imagine having a job like that...these guys are "ninjas" according to one of the nurses. :) They must never sleep. 
Here are a few pictures from our day...

Parke waiting for his appointment this morning. You can probably see the blue color around his lips...this has started happening occasionally, but he is still not requiring additional oxygen. 

Naked man waiting on his echo. He was giving me "the look" because he wanted his clothes back on!


They went ahead and admitted Parke to ACH today just so that we would be in the system if we decide to move forward tomorrow with surgery. 
He looks very hooked up, but really it isn't anything compared to other babies we saw! 
He is only having his blood pressure, heart rate, etc. monitored. He is not having any additional "support" at this point. 

The excitement of the day came with a tornado scheduled to hit the Little Rock area. Sirens were going off, and they required almost all of the patients to leave their rooms and gather in the hallway. We stayed out there for almost an hour! Parke was easy to transport because they just unplugged all of his stuff. The kiddos that required life support looked a lot trickier to move. The nurses were so sweet taking care of those babies!


So, tomorrow we will meet with the surgeon and know a lot more then. I will keep you updated as I can!

A friend reminded me of this verse the other day, and I love how it reminds me once again that these tough decisions are not all on us. God has already planned Parke's first and last day. I am thankful that he was with us for his first, and I pray that his last is far far away. We will trust God's timing and direction as we move forward tomorrow, and we know that none of these things that are happening are a coincidence, and nothing is a surprise to God. 

Psalm 139:13-16 "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Monday, January 28, 2013

To Little Rock We Go...

We didn't make it to Little Rock today, but we are headed there tomorrow for a very important appointment. After a long phone call with the cardiologist today, we are hopeful there is a good surgical option for Parke since he has done so well. The doctor seemed optimistic, but we will know more tomorrow afternoon. 
Pray pray pray...please. 

Sunday, January 27, 2013

Parke's Newborn Pictures

This post is going to be short on words and heavy on pictures. Our sweet photographer was with us when Parke was born and came to our house when he was 2 days old to capture some precious memories. We got some additional pictures this past week, but I will share those another time. 

Just a quick update on Parke's status...we are beginning to see signs of deterioration with his sweet body. His feedings have slowed significantly, and he has been resting a lot. He seems very content and peaceful, but we know these are all "signs" of what is coming. Please be in prayer for our much loved little boy. 

In the mean time, enjoy these priceless pictures that capture Parke Henry's first days perfectly. 
















Good grief, I should have known I couldn't post this without adding another thought. 
We are struggling to understand God's plan in this whole situation. I struggled as we left the doctor's office on Thursday and found out there were signs that Parke wasn't fully healed. I know God has a plan that I can't see, but because of my human nature, I WANT TO KNOW. I want to know why things happen, I want to know why he chose us to be blessed by this baby, I just want to know. However, in the midst of tears and sadness as I left Parke's appointment on Thursday, a song came on the radio (surprise!). :) The song is called, "What Do I Know of Holy," and you might be able to guess what it is about from the title. The chorus reads:
"What do I know of you who spoke me into motion?
Where have I even stood but the shore along your ocean? 
Are you fire? Are you fury? 
Are you sacred? Are you beautiful?
What do I know? What do I know of Holy?"

Really, what do I know? And what could I really comprehend of his plan? He spoke me into motion, he spoke you into motion, and he spoke Parke into motion and right into our arms...for a purpose...with a plan. 
Amen. :)

Saturday, January 26, 2013

Monsters!

I'm about to do a blog post without a single picture of Parke...please don't hurt me! :) 
He's still doing great, FYI. More pictures to come tomorrow. 

Now, on to the monsters...
 I am a sucker for pajamas, and had to re-stock Collier's selection this past week because he is growing out of everything! At 17 months, he is wearing a 2T in all of his clothes. I bought size 2 and 3 pj's thinking we would be good for a while. After washing, the 2's will not even fit over his chunky-man legs. :) Thank goodness I bought some bigger, and thank goodness his sister is smaller and regularly begs to wear Collier's pj's to bed anyway. 
So, Landry got never worn hand-me-downs from her little brother, and they both got to be monsters the other night. They had a big time being "twins!" 

Collier is not a huge fan of taking pictures with his sister lately...


"Landry, pose for me with your hands on your hips." :) Ha...or belly. 


"Now...act like monsters!"


I love these two so much! 

Hope you're having a great weekend! 

Thursday, January 24, 2013

2 weeks!

Happy 2 week birthday to our little angel baby! 
Like I said yesterday, 2 weeks is so much longer than we thought we would have him here on earth, and he is still pushing along today! I will give you an update from the doctor below, but first I wanted to share a few other things with you. 

I'll start by saying that I love Christian music. When I am in my car alone and actually get to listen to the radio (instead of Cinderella or Veggie Tales or Little Einsteins), it is a glorious day. 
Before Parke was born, we started planning small parts of what we would want for a memorial service. I knew instantly a few songs that I would want played at the service, and the first one I wrote down was "I Can Only Imagine." If you don't know the song, it basically has beautiful lyrics describing what the writer imagines his days in heaven will be like. I love it. 
On Monday, I was out running some errands with Parke. Just the two of us...like a normal mommy would with any baby. He began to get fussy, so I stopped my errands, sat in the front seat of my car, and started feeding him a bottle. As soon as he started eating, that song came on the radio! It's an older song and is played regularly, but not all the time...if that makes any sense. I started bawling because this was a song I had set aside for his funeral, for his memory, not for his PRESENCE. I do have a point, and it is to share once again God's mercies through this journey with Parke. God has been merciful to me as a mommy and answered my prayers that if Parke was going to have a short life, that it would be meaningful. He has answered my prayers that even in his short life he would LIVE and be loved...meet family and be known. I absolutely marvel at the fact that Parke is here and has been "normal" for these weeks. My God is bigger than any diagnosis, and I am so thankful. 


I sent this picture to Parke's biological family last night. I love the text conversation that we had following the picture, and I can't help but to share it with you....they are precious!

(Some of it is a little choppy with the language barrier, but you'll understand!)

Birth Family: Thank you so much for send his picture :-)
Me: You're welcome! Hope you guys are doing well. 
Birth Family: yes we are...so you guys are doing good too?
Me: Yes, everything is going great. We are taking Parke back to the doctor tomorrow to look at his heart.
Birth Family: we all are praying for parke...no matter we knows God already heal him.
Me: I agree! He is a special baby.
Birth Family: I know! I'm thank you and your husband for wanting him in your family...
Me: We love him and love your whole family very much!
Birth Family: Thank. We love you guys too like ours own family...thank you

Can you believe that? I cried reading their messages..."thank you for wanting him in your family?"....oh my goodness! There has not been a second that we have not wanted this sweet baby, and for them to think they have to thank us just broke my heart! I'm telling y'all...I am in love with this sweet family. 

DOCTOR UPDATE:
Now, on to the update from the doctor today. It wasn't all good. Parke is still doing well, but his heart beat is faster than last week. It is now a "gallop" instead of a normal beat. They did a chest x-ray and saw that his heart is quite enlarged. These are both signs of failure, but we don't know how fast the failure will be. I had a call from Children's Hospital today that the cardiologist that saw Parke initially (in his mama's belly) would like to see him on Monday. Everyone is surprised that he has done this well so far, so I am excited for them to tell us more about what might be going on. Since his visit last week, he has gained 1/2 pound! At this point, we are sad but we were prepared for this to happen. I know I keep saying it, but we have had him significantly longer than we thought we might. I love him to pieces and can't wait to find out more on Monday!

Wednesday, January 23, 2013

Baby Dedication and Day 13

We had Parke dedicated on Sunday, and it was a wonderful morning. We did this with Landry and Collier when they were 2 and 4 months old, and it was so special to be able to dedicate Parke the same way. Our pastor read Jeremiah 29: 11-13 that I have shared with you. I love how clear it is that GOD is the one who makes our plans, not us. His plans for us are good and complete...without us doing a thing. All we have to do is trust him, and he will make our paths clear. I am resting, resting, resting, in these verses. We had lots of family there, and it was just a special time. 



We've had a lot of visitors this week, and Parke is enjoying being snuggled and loved on by so many! He is still doing great, and we are continuing to see no changes...except for him growing and changing!

Here he is with his best buddies...
Small, Medium, and Large!
12 days, 11 weeks (Isaac), and 6 months (Harris)

Those sweet lips are just so kissable. :)

Landry would hold Parke 24/7 if I let her. She is such a sweet sister! The only problem is that she tries to feed him...food! I had to explain that he can't have fruit snacks or crackers until she can see teeth in his mouth. :)

And one of the sweetest parts of the day. Falling asleep with sweet Parke right in the middle of us. He is such a sweaty cuddle bug, and I love spending those evening hours with him when everything else is quiet. 


So, tomorrow  is the 2 week mark. I have had many of you ask, what's next? Well, the answer is that we really don't know. We take him to the pediatrician tomorrow and will do a weight check and have his heart listened to. Our pediatrician for Parke is a man that we trust and admire as a doctor and father. He is a believer in Christ, and I believe we will walk this path with close guidance and direction from him. We may have a follow up visit at Children's Hospital, we may have another echo performed to check things out...I just don't know. A friend texted me and basically put into words exactly what Micah and I are struggling with at this point..."Barring any miracle, his situation is the same, and your desire to keep him from suffering is the same." Well said, sweet friend. :) Just because Parke has outlived the doctors' life expectancy doesn't mean that surgery will be an option. The success rates are still as low as they were when we got the information initially, the hospital stays are still months and months, and the quality of life is still not ideal for any child. There is just a lot more emotion involved with precious Parke being in our arms now. 

So, we will continue to take things day by day. I am so thankful for this time with Parke as a "healthy" baby. We never dreamed that we would bring him home and live a normal life. We thought he would be hooked up to every machine imaginable just to keep him comfortable while he passed. Each day is a blessing, and I plan to keep soaking up his sweet goodness as long as the Lord wills. 

Monday, January 21, 2013

3 under 3

Oh y'all....our house is a circus. I wish I could call myself something like "the ringmaster," but these days I feel like I'm mastering nothing. I knew that having 3 babies under 3 would be a challenge, but I didn't realize the guilt I would feel for the way my attention is split. Especially with sweet Parke being sick, I don't want to waste one single second with him. In the exact same breath, I miss Landry and Collier like CRAZY if I have help with them and they aren't around. When Collier was born and I was busy with Landry, he just learned to be content and "toughen up." In a normal situation, I would absolutely be training #3 that same way, but with Parke Henry it's different. As you can tell from my rambling, my emotions are all over the place. :) Really, Parke is the most content baby out of all 3. He is happy to be in his swing or laying on a blanket looking around, but I can't stand to not have him in my (or someone else's) arms...that boy needs to be loved on! 

With that being said, welcome to our lives...

Collier wants to be a baby again, of course.
I don't have any pictures, but Landry is also asking/taking a bottle again every once in a while.  



Landry and Collier have more energy that I ever thought could fit in one tiny body...

Landry is so sweet with Parke and loves that she has "two brudders!" 

This is where I said, "Landry, be sure to hold his head!" :) Interpreted by a two-year-old. 

Landry is such a helper and loves feeding Parke his bottles.


And our precious, peaceful, sleeping baby. He is such a gift, and makes my heart so happy in the midst of our crazy story. 

We are on day 11 and counting. Our hearts are full! 
Parke was dedicated at church yesterday...can't wait to share pictures with you soon! 

Saturday, January 19, 2013

A visit to birth mom...

We went to visit Parke's sweet birth mom and family today. She asked us to come on Saturday because she wanted her daughter to be home from school to meet him. It was the first time the kids saw him, and they were all so excited. Birth mom was happy that we came, and I LOVED getting to squeeze on Parke's biological siblings and cousins. Micah even said that it was "fun" as we left. I hope we get to do this many times while Parke is here!

Birth Mom, Parke's siblings (minus one), and two cousins....so sweet!


Parke's ornery brothers...they are the cutest things ever!

I really can't even tell you how much I enjoyed today. I know it seems weird, but we are like family. I love them, and we hung out and visited just like precious friends. Parke did have a dirty diaper while we were there, and birth mom handed him back to me. :) It made me feel even more like the "real" mama. 

Parke's aunt told me that they have been praying for him to be healed...them and a lot of others, I know! He is still doing great today and holding strong. He is one loved little boy! 



Friday, January 18, 2013

It's Official...He's a Gibson!

After seeing ultrasounds, hearing Parke's heartbeat, watching him kick, and so many other things, I knew I was his mama. 
Then, upon receiving my "mama band" and hearing my little man cry in the hospital, I knew even more that he was mine. 

{love these sweet pictures our attorney got right after Parke's birth....I was overwhelmed with emotions!}




Then, on Wednesday it was OFFICIAL. Parke Henry is a Gibson and I AM HIS MOMMY!

Oh, and Micah is his proud Daddy too. :)

We are on day 8 now, and can't believe the joy that Parke has already brought to our lives...and many others. We didn't know if we would ever hold him, ever hear him cry, ever get to KNOW him....and we are. He is a precious, precious baby and I am so thankful that he is ours. 



 Parke had another check-up yesterday, and the nurse still doesn't see any change in his health. His heart and lungs still sound great. Praise the Lord! We don't know how long we will have him, but I am so glad that he is thriving while he is here.

We are trying to live our lives like normal, but there is still a cloud of worry in our minds. I check Parke multiple times each night to make sure he is breathing. I turn on the lights and watch his color while he eats. I remember being nervous about L and C when they were newborns, but this feels different. I am just thankful for these sweet moments and trying to soak up each minute he is with us! 

Birth mom called yesterday, and we are taking Parke to visit tomorrow! I was so excited to hear from her. We called and checked on her the day she released from the hospital, and she was doing great after the transfusion. She sounded like she felt well. I have tried not to call and bother her and just left "the ball in her court" as far as visiting. We were starting to think she wouldn't call, and then she did. I can't wait for her to see how precious he is tomorrow. :)

More updates to come!