Headed home

Hey everyone, 

We are headed home! Nolan did well with the cath yesterday. He had a little trouble during the procedure but recovered quickly. He came out of the cath lab off of the ventilator! I can't describe how good it was to walk in the PICU and see the nurses holding him! He did so well over night that they decided we didn't need to go to the floor. We are so thankful. We are tired. Nolan is very aware of his surroundings and he knows if I leave the room and he doesn't like that. My mom and I took shifts and held him all night. As for future plans, we will have another cath in 6 weeks. Please pray for Nolan to get stronger and bigger during this time. Also, please pray that the right decisions are made regarding the next steps. 

Our hearts are heavy today. Nolan's bunk mate and buddy, John Pearson, went home to be with our Heavenly Father last night. Please pray for his precious parents. 

God is close to the broken hearted and saves those who are crushed in spirit. 

Psalm 34:18 

Joshua 1:9

Pics from our photo shoot with Jana! We love them! 

Playing with anything he could find this morning! 

Waiting to go home! 

Heart Cath Tomorrow

Hey Everyone,

We are headed to Jackson today. Nolan has his heart catheterization in the morning. We are supposed to be there at 7. He can't have any milk after midnight but he can have apple juice until 5 am. I'm not as panicked about that as I usually am. This time, I just don't want to hand him over. I don't like that I know what he is about to go through and he has no clue. He is so happy and feels great. It just hurts my heart to put him through more. Please pray for us tonight and tomorrow. Please pray that his pulmonary hypertension doesn't act up too bad so we can get him off of the ventilator ASAP and come home. We know God will be holding him as always. 

As soon as I pray, you answer me; you encourage me by giving me strength

~ Psalm 138:3

Joshua 1:9

Doing Good

Hey Everyone! 

Nolan has been doing so so good the past couple of weeks. I have started back to work. We are all starting to get used to the new routine. Nolan had pictures made yesterday by our new friend Jana. She was so much fun. She was born with a CHD similar to Nolan's and we really enjoyed meeting her. Nolan was such a ham! He smiled and talked to her the whole time. I wasn't so sure how he would do because he is usually pretty serious when he meets new people in a new environment. Once again, he proved me wrong! He also sat up the whole time by himself. He acted like he had been doing it for months! Sitting up is a huge accomplishment for him with all the surgeries he has been through! 

We had an appointment this morning and all was well. He is back on track with his growth. He has come such a long way and we are so proud of him. He is by far the healthiest he has been in a long time. With that being said, there is no better time than now to do his heart cath. I got teary eyed just talking about it with his cardiologist this morning. I fully understand that it's the next step in his journey to a single ventricle heart, but it's hard when he seems so perfect right now. The way his cardiologist put it is that there is a window of time to get this done right and we are in it. So, we will have a heart cath next Thursday. Please pray that we will have a better time with it this time. Pray that he does not have another pulmonary hypertensive crisis. I have complete faith that he will take it like a champ this time. He is in a much better state of health than he was last time. As always we are very thankful for the prayers and support.

We are looking forward to this weekend! Color me Rad 5k this Saturday and celebrating Hudson's birthday Sunday! 

Joshua 1:9

Yesterday before his pictures! 

We have a sitter! 

Riding a bike at Bren bren's 

He let me put him down for a nap! Lasted 8 minutes. We tried ha ha 

First Saint Patricks Day! 

Appointment and Radiothon

Hey everyone!

We went to see Nolan's cardiologist yesterday for a routine checkup. All is well! He gained a little over a pound in three weeks. We will take it! He still does not like to eat. He will take about 1.5 ounces of milk and he is ready to play. I try to make him eat al least another ounce and usually he will with some fussing and breaks involved. Solid foods do not interest him either but we keep on trying! Everything went smoothly yesterday and we really couldn't of asked for a better check up! He was flirting up a storm and really showing out in the clinic ha ha. We will go back next week to catch up on his shots. 

After the appointment, we went to help out with the Mississippi Miracles Radiothon. It's such a wonderful thing for Batson! We were so happy to share Nolan's story and our experience live on two different radio stations. Please tune in if you live in the Jackson, Vicksburg, and Meridian areas. If not, you can listen in online! I promise you will be touched by these miracles that are happening everyday in our own state. They are asking for people to make a pledge of just 15 dollars a month. It would be the most rewarding and appreciated 15 dollars you spend. They are using the money to buy equipment like med wagons (every child loves a wagon ride) and vein finders (Nolan would appreciate those) and many other things to help the doctors and nurses provide the best care! Which they already do! If you would like to donate give them a call at 601-984-5437 or toll free at 888-681-5437. 

Thanks for keeping us in your prayers. Please keep them coming for upcoming appointments and the heart cath at the end of the month in March. Also, I'm going back to work next week so pray we adjust quickly to that!  

Joshua 1:9

   My big 7 month old! 

Twins

Nolan and his sweet cousin 

Nolan's first Valentines Day!

Hey everyone!

Nolan has had a great day! He did not win the photo contest, but he did get the most votes in his age group and second most overall! Thank you so so much for voting! He is the winner to us! And I believe he has brought a little bit of awareness to congenital heart disease week! Nolan is doing so good. He is getting stronger by the day. He doesn't really love eating but we are working on it. We actually got out of the house for the first time in a VERY long time (besides doctors appointments and going straight to Gigi's house). We visited his daddy's office, visited his Bren Bren, and went to see his best friend Meri Westin. He loved her! He just wanted to pet her and hold her hand! So sweet! Now we are at home watched a little Mickey and getting ready for bed! We scheduled his next heart cath today. It will be March 27th. Very nervous about it so keep us in your prayers! Also, please pray that he will eat a little better so he can get back on track on his growth curve! Thank you to Kristi Seeley and all my friends at work that raffled off a dinner at back draft! Thank you Heath Simpson, the winner, who donated it to us! Thank you also to all the sweet children and the Beta Club at Washington School for all you did for Nolan today! We are so grateful! 

     This is how we watch Mickey! 

   Doesn't want to eat! He did better tonight! 

          Visiting daddy at work 

      Nolan and his sweet valentine

Have you ever seen a Pinterest fail??? Ha ha here ya go! I never imagined doing a baby footprint in paint could be so hard. I think it requires at least 5 people. We were both covered in paint from head to toe. The bottom right was supposed to be a handprint ha ha. It was fun! Lesson learned! Happy Valentines Day everybody! 

Great cardiologist visit

Hey everyone! 

Wednesday we went for Nolan's post surgery cardiology follow up visit. This is the visit that last time we ended up staying 22 days! Not this time!!! We are at home by the fire and just finished watching church on tv. We have had a nice relaxing weekend with his big brother and cousin. I did not get him out in the snow! It wasn't enough at our house to claim! The appointment was long. Nolan went through all the emotions he knows all in one visit. Happy, hungry, tired, mad, REALLY mad, and back to happy. Praise God everything looked good on his echo and EKG. The plan is to go back in two weeks to make sure everything still looks ok and them we will have another heart cath at the end of March. This scared me and I find myself really worrying lately. He went through so much last time we did the cath. The pulmonary hypertensive crisis really almost took him from us. This time we will be more prepared for it and take precautions to prevent that from happening. No one saw that coming last time. Of course, I still worry. I watch his every breath and constantly assess his color. Asking brent and my mom, "does he look ok? I look at him so much I can't tell right now!" They always say yes he looks fine. A verse I learned at a very young age popped into my heart and mind last night while I was laying in bed praying. Create in me a pure heart, O God, and renew a steadfast spirit within me. Psalm 51:10. I know I need to stop worrying and keep praying. Brent texts me this verse (even when we are in the same room sometimes) 

All of this I know. I just have to be reminded. We know that God CAN because he has, and we pray that he will continue to show us miracles through Nolan. 

This week is congenital heart disease (CHD) awareness week. I really want to become an advocate for Nolan and raise awareness so that we can help people in the future as well as promote research. There is no known cause for these defects in most cases. The treatment for CHDs has come along way in the past 20 years. I would love to see it do the same and more in the next 20 years. 20 years ago, there wouldn't have been much hope for Nolan, but there is now and that is amazing. I entered Nolan in a photo contest called #RockYourScar. It is put on by the little mended hearts association. It's purpose is to raise awareness and support families of children with CHDs. There are four days left to vote! You can find the link on mine or Brent's Facebook page or you can google the rockyourscar photo contest and search for Nolan Williams. You can only vote once! 

Also, Nolan has a team in the color me rad 5k in Jackson on March 22. A percentage of the proceeds go to Blair E. Batson children's hospital. If you would like to join us the captains last name is Pentecost and the team name is strollin' for Nolan. We are scattered through the different time slots. 

Sorry such a long post today! I had a lot to put out there! Please continue to pray for Nolan! Please say an extra prayer for his buddy, John Pearson. 

Joshua 1:9 

This do rag cracks me up. Found it on Etsy. 

A Thankful Blog

Hey Everyone!
I am watching Nolan smile in his sleep this morning. I am so thankful for this baby and that God chose us to be his parents. I thank God every single time I look at him. He is such a blessing. I am so thankful that so many people have shared this blog so that others could witness this ongoing miracle of life. I know God has a lot planned for this boy and Brent and I have an important job in guiding his life.

I am so thankful for our friends and family. We had a benefit for Nolan in our hometown yesterday. I was so overwhelmed and amazed by the amount of support we received. It is unreal. Thank you Stephanie and Shane Henderson! Stephanie and Shane have never done anything like this but God spoke to them to do it and they more than pulled it off. It was perfect. I keep saying that I don't know how to thank people big enough for this. Thank you to everyone who helped get it together. Thank you to everyone that donated items for the auctions. Thank you to all friends and family who came out to support us. From the bottom of our hearts, we are thankful.

Please keep us in your prayers this week. We go back to follow up with our Cardiologist on Wednesday (Feb.5). I think she will be pleased with Nolan. He is doing great! We started spoon feeding him this week! It is so much fun! We tried rice cereal first and he acted like we were torturing him. He would scream and turn bright red (thankfully not blue!) and hold it in his mouth. Turns out, he wanted some real baby food. We treated him to some squash and he liked that!
Thank you again, for all the prayers and support!
Joshua 1:9

Licking his lips and smiling after eating his squash!