Precious Moments

Each night bedtime is a special time at our house. Unlike many families we choose to  snuggle our girl to sleep at night. Those times lying there after bedtime prayers are often filled with some of the best conversations with her. I had to share last night's conversation if for no other reason than to help myself remember. 

One of the biggest struggles I am having as we prepare for our trip to MUSC is leaving Harlie behind. I know that this is the best situation for her, and I am so grateful that my parents are turning their lives upside down to be there for her when she needs them most. I know that my WES family will take extra good care of her at school, and she will be able to continue her life as much like normal as possible. I just think of the little things like our times talking at bedtime and it breaks my heart. 

Last night as we were lying there I told her that I sure was going to miss these times while we were in Charleston. She told me that she was going to miss it to. I reminded her that Grannie would be taking over my snuggling duties. She said, "If I change my sheets I think Papa will like my bed." I asked her were she was going to sleep, and she replied, "I will sleep in your bed with Grannie. It won't smell like you guys though." Our daughter has a nose like no other. She is always telling us about the smells she connects with places and people. We talked for a few minutes about our plan for her to be traveling down for the important days like the day he is born and his surgery. We then talked a little abut her weekend visits after surgery. She seemed to be ok with a few days here and a few days there.

Then she said, "Mommy I am nervous." I was expecting her to tell me that she didn't want us to leave her and that she was nervous about staying here with Grannie and Papa. I was not prepared for what she said next. "I am nervous that I won't get to see and hold my baby brother. I want to see him and hold him." 

I reminded her that we are going to do everything in our power to see to it that she gets to see Mac as soon as he is born and that we will do our best to get the nurses to let her hold him. We reminded her that it is out of our control because the nurses have to do what is best for Mac.

As much as I try to prepare her and ensure that she is comfortable with the arrangements we are making, she never ceases to amaze me with the things that matter most to her. I am so proud of the young lady that she is. Mac is blessed to have a big sister who is already in love with him. A big sister who prays for his healing multiple times throughout the day every day. Vince and I are so blessed to have such a thoughtful caring little lady. 

I love that beautiful girl! 

Harlie's Ears

On the heels of yesterday's wonderful news I must ask you to lift up our sweet girl in prayer. This morning she had an ENT appointment to follow up on a ruptured eardrum this spring. Dr. Brown said her right ear looked, "Happy, Happy, Happy." The left ear though was not. He said that at some point Harlie's left eardrum had been infected by a specific bacteria that eats away at the eardrum. He told us that the hole was so large that it probably would not heal in it's own. He told us we would need to schedule an appointment with their ear specialist to talk about repairing the damage. After sharing with him about our very unpredictable fall schedule, he was kind enough to go and talk with the specialist to see If he could go ahead and see us today. To my surprise the specialist came right to our room so that we were able to take care of the planning in one quick visit. 

Dr. Rampey took a look at her ear and said that 45% of her left eardrum is missing. He told us that surgery was necessary and that he would have his scheduler call me ASAP to get her in before we have to go to MUSC. The blessing in all of this is that the hole is on the back of her eardrum. This was a good thing because he said that he could do the surgery within the ear canal. Otherwise they would have had to lift the ear from the back and then reattach it. The only incision they have to make now is a small one just above her hairline to take a small bit of tissue for the patch they will be pacing on the eardrum.  

Please pray for Harlie. She is handling the news like a champ. We explained that she will be asleep the whole time, and that we will be there when she wakes up. She seems to be a little nervous but otherwise she hasn't let it get her down. We a blessed to have such an amazing daughter!

Keep Praying, God is Working!

Today we met with our pediatric cardiologist and our maternal fetal medicine specialist to check Mac's growth and take another look at that precious little heart. Today's visit was filled with lots of wonderful news of the ways that God is healing our baby boy.
So far God has answered many prayers for this little guy. Our first prayers were that he have all four chambers of the heart. That prayer was answered. The second was that the left side of his heart continue to grow and develop to "catch up" with the right. The doctors at MUSC said that the left side was only slightly smaller than the right. We have been praying that the Mitral Valve continue to grow and develop making it possible to have the one time surgery and for God to touch his heart with His healing hand. Today when we met with Dr. Horne he told us that the left side is looking promising for that one time surgery and that there is even a possibility that the main arteries may be "malpositioned" vs. "transposed." This is WONDERFUL news! He told us that he cannot be sure because we are trying to see something so small and our angles are limited trying to see using ultrasound. I am praising God for the work He is doing in this little heart. God told me to wait, we are waiting, and He is working!
This boy has been in His hands from the very beginning, and I am just so grateful to be able to see how God is going to use him. Please continue to pray for healing. Please continue to pray that the doctors will be able to do a one time surgery IF they have to do surgery.
On another note, I am grateful that we received confirmation that I do not need to travel to MUSC early. We were concerned when one of our OB doctors suggested that we go down 2 or 3 weeks early to be in Charleston if I went into labor. After talking with Dr. Horne today he assured us that if I do go into labor in Greenville that there is no need for alarm. He said that Mac would still be flown to MUSC before me and that it would mean a brief separation, but that he was not at risk being born here. He also told me that the ECMO, which was mentioned by one of the OB doctors, was not in the plans for Mac. This means one less machine for him to be dependent on. They said that Mac's oxygen levels would be monitored and that if necessary they would just put him on oxygen to ensure his safety while preparing for surgery.
After he is born they will do their tests and determine the final plan for how to proceed. We are just keeping a very close eye on his development at this point. I will be increasing my OB visits and go back one more time to MFM to do another full ultrasound.
We continue to Praise the Lord that other than his heart, all other development seems to be right on track. Today Dr. Grieg told us that he is a "stocky" little fella. He is currently just short of 5 lbs. This is a little larger than average for this point in my pregnancy, but they tell us that they want him to be a big healthy boy. This is a good thing with him facing surgery so soon after his arrival.
With all of the challenges ahead for this little guy, I still stand firm in my faith that he is in the hand of the Great Physician! Thank you for each of you who continue to lift Mac and our family up in your prayers. We are so grateful to be surrounded by people who love us enough to pray without ceasing on our behalf. Keep praying, God is working!
 

Sweet Summertime!

This summer is quickly becoming my favorite summer of all! With all the additional doctor appointments and preparations for Harlie's baby brother, it has been tempting to lose sight of the joy that summer brings. This year at the end of the school year Harlie and I created a bucket list. This is a list of activities that she wanted to do with me this summer. It is a list of fun activities that range from puddle jumping to blanket forts. With golf camp completed and my school commitments wrapping up, we have finally begun marking things off our list!
I am so grateful for the memories made this summer already snuggling on the couch watching Pound Puppies, shopping at Barnes and Noble with our gift cards, playing Phase 10, Farkle, and American Girl dolls in the blanket fort, and making wallets out of Duck Tape. Today we will be making AuntieAnne's Pretzels! Yummy! I am thinking tonight looks like a good night for catching fireflies too!