Friday, March 25

Quite a few people have reached out to let me know that their kids have really taken an interest in Walker and that they pray for him all the time. Honestly, this means so much to me and makes me so happy. The teacher in me has such a passion for kids, and the thought that Walker’s story might in some way open their eyes to the power and love of Jesus is amazing. I pray that as they follow along with Walker’s journey, they might see real examples of God’s power to answer prayers and His deep love for all his children-- even the smallest baby. I pray that even just a tiny seed of faith might be planted in their hearts to believe in a God who can do anything, and a God who has a purpose for them.

So, this one’s for the kids. I am going to try to write in a way that makes all of this big medical stuff easy enough for them to understand. Here it goes…

Since Walker graduated from the NICU, he has been loving his new spot. He has a whole room to himself now and it’s much quieter and cozier. He has pictures on the walls that his big sister made for him, a TV to help his mommy and daddy pass the time, and space for all the baby things that help him learn and grow, like his play mat and his bouncy seat.

The best part about Walker’s new room is that his big brother and sister are allowed to come and visit him now! We asked for people to pray that God would make it possible for Jordynn and Easton to visit Walker more often, and He answered our prayers. They got special permission to come and visit Walker twice a week, for up to two hours each time. Jordynn and Easton are so thrilled they finally get to spend some time with their baby brother. They got to hold him and touch him for the very first time last week, and it was so special for them. They have been waiting 5 long months to hold him! Jordynn has already come back to visit a few times on her own with mommy or daddy and has really loved laying on the floor with Walker on his playmat and playing toys with him. She also got to help give Walker his bath! Easton will get some turns to visit Walker all by himself too, but right now he has a bit of a cold so we have to wait until he is feeling all better so he doesn’t pass his germs on to his baby brother.

This week the occupational therapist, or OT, came to visit Walker. An OT is someone that helps people learn how to do every day things that might be challenging to them, like eating, or sitting, or writing. Since Walker was born 8 weeks early and has been in the hospital his whole life, it can be a bit harder for him to learn how to do all the baby things, like lifting his head up, or sitting, or holding toys. The OT came to look at Walker and give us some exercises and stretches that we can do with him each day to help him get stronger. She is making a big poster for the wall in Walker’s room with pictures that show us how to do all the exercises and stretches so we don’t forget. She also gave us an exercise mat, like the ones you might sometimes use in gym class at school, to put on the floor in Walker’s hospital room and it has been amazing. It was getting tricky to play with Walker on his crib because he is getting so big. With his new mat, we can lay down on the floor with him for tummy time and play time. It feels a little more like how we would play with him if we were at home. It’s been really helpful and the extra space for Walker to move and explore in is great! We are still really wishing we weren't stuck in a hospital room, though.

The speech-language pathologist, or SLP, also came to visit Walker this week. An SLP is someone that helps people learn to talk and communicate well when it might be hard for them. Since Walker can’t hear too well in his right ear, he might need some extra help learning how to talk. He is much too little to talk just yet, but learning to talk actually starts with hearing other people talk, so the SLP gave us some little tips to help him. Things like getting close to his face when we talk to him, copying the sounds he makes, and teaching him baby sign language will really help him learn to talk and communicate. Walker already loves to coo and make baby noises, so the SLP said he is doing great!

One more person came to visit this past week-- Walker has had lots of important visitors! This person was a physical therapist, or PT. She came to look at Walker’s special hand-- his lucky fin, like Nemo from Finding Nemo. She gave us some more stretches to do with Walker to help him move and use his lucky fin. She said once Walker is big enough and healthy enough to leave the hospital, we will come back to visit her and she will continue to help Walker learn how to use his special hand. She told us that she knows Walker is going to amaze us all with all the things he will learn how to do.

Last week Walker got a new G-tube in his tummy. This tube is a little bit bigger than the one he had before (it's a size 12) and it looks a little different too. It is called a mic-key button. This G-tube has a tiny little balloon on the inside of his tummy to stop it from getting pulled out, so it is much more secure. Once a week we have to check to make sure the little balloon has the right amount of air in it. When Walker is a bit bigger and he isn’t having a feed, we will be able to close his mic-key button and it won’t get in the way so much while he is crawling and playing. In about four weeks, we hope that Walker will be ready to get another new tube (a size 14), called a G-J tube. This is the tube he needs to be eating from in order for it to be safe enough for us to take him home. Once he gets this G-J tube, he also won't have to have all the tape on his face or the tube coming out of his nose anymore.

(This is Walker's new mic-key button)

Monday was a big day for Walker because he got to start having my milk for his feeds again! The doctors did an x-ray to look at his chest and see if his chylothorax was all healed up, and everything looked good. He’s been having all breastmilk for a few days now and it seems to be going well. He is also inching closer and closer to full feeds! Walker’s special nurse said that if everything goes as planned, he will be up to his full feeds by Tuesday. Once he is up to his full feeds, they will start trying to see if Walker can handle having his G-tube on his tummy closed for little bits of time without throwing up. Right now, his G-tube is still open all the time to let the stuff from his tummy drain out. The goal is for Walker to be able to be on his full feeds and have his G-tube closed without throwing up.

Walker also started a new medicine last week. It’s supposed to help the muscles in his esophagus and stomach work better to move things down, and help him not throw up. His new medicine is called Cipraside, and the doctors say that it is usually the best medicine there is for kids like Walker. This new medication sometimes causes heart problems, though, so because of Walker's heart defect the doctors are keeping an extra close eye on him. He had a special heart test, called an ECG, to check his heart after being on the new medicine for a few days and everything looked good. Right now, Walker is on the smallest amount of this medicine possible, and the doctors will slowly give him more if he needs it. So far, it doesn’t seem to be helping much because Walker is still doing lots of gagging and retching. We will have to wait and see what happens in the next little while as his body gets used to the new medicine. We are really hoping this new medicine will help Walker feel more comfortable because it's not so nice throwing up all the time.

So, that’s a little peak into Walker’s life in the last couple of weeks. We are still patiently waiting for him to get big enough for his heart surgery. We are working hard with him every day to make sure he is learning and growing stronger. He is doing a good job with his feeds, but is still having pretty bad gagging. The next few weeks the doctors will work really hard to try to get his reflux under control.

Can you keep praying for Walker? We are so thankful for your prayers and they are making a real difference. God is hearing all your prayers and He is answering them! God is so powerful and He can do anything. We see him doing little miracles for Walker every day.

Please keep praying that Walker will grow big and strong and that he will be healthy enough to go home soon.

Pray that he will be able to eat all the food his body needs without throwing up.

Pray that his new medicine will work and help his tummy feel much better.

Pray that he will be able to get his G-J tube soon.

Pray that God will protect his heart and keeping it working well until it's time for his big heart surgery.

Pray that God will keep our family healthy so that we can keep visiting Walker at the hospital.

Even though Walker is doing pretty well, he still needs lots of tubes and wires hooked up to him all the time to keep him safe. They make moving him around pretty tricky and are the reason we are pretty stuck in Walker's hospital room right now.

The line in his right arm is his PICC line-- it's where he gets his IV nutrition and medications. The tube taped to his face is his NJ feeding tube-- it goes all the way down through his tummy into his small intestine and it's how he gets his milk for now.

The tube in his belly is his G-tube-- it is open with a tube coming out of it to drain all the stuff from his tummy so that he doesn't throw up. Normally kids feed through their G-tube, but Walker can't right now because it makes him throw up.

The three little stickers and wires on his chest are hooked up to his monitor so the nurses can watch his heart rate and breathing rate.

The wire coming from his foot is his sat probe-- it measures his oxygen level and is hooked up to the monitor for the nurses to watch as well.