As I was beginning this post last night, I was looking for a verse to add to this post. While writing it, Abbie, my next door neighbor sent me this verse out of the blue. I knew it was God working through her to send me the perfect verse... and perfect it is! Thank you Abbie for sending it to me. God was truly working through you!
Monday morning my mom came early to help me out for the week. God has blessed me with a good recovery, but I still struggle with some things and don't have my full strength back to help Easton with all his needs. So having my mom here with me means so much to me. Even though it is exhausting at times, she is here for me. Easton really enjoys his Mamaw here too. He doesn't want to fall asleep because he doesn't want to miss a moment playing with his Mommy and Mamaw. It melts our hearts! Thank you Mom for sticking with me through this. I hope you know it means the world to me, and I love you so much!
Monday when I called throughout the day to check on my miracle, the day nurse said he was having a good day and they were letting him relax as he had a rough and busy weekend. I was looking forward to talking to Dr. Pyle as he is on shift for the next 2 weeks. Dr. Pyle was the one who was with us from the start of this fight. He came down to my room each week to check on me and to always bring sunshine into my day. He is the Dr. who reminds me of my hero...Dr. Ruff ...with his amazing bedside manner and faith. So, James and I looked forward to him caring for our little warrior.
In the late afternoon, my phone rang. My face lit up as I heard Dr. Pyle's voice, as cheery as always. He called to give me an update on Asher, which meant so much to me. Asher was doing well and he said that they increased his feeding to 12 ccs. He then explained to me more about his infection as he said he was looking into what could have caused it, but informed me that the antibiotics were helping him. He then said that a chromosome test they did on him when he was born came back and was normal. The test checks billions of chromosomes for any mutations or deletions. What is the significance of this test? Well if you know me well, you would know I am a carrier of Duchenne Muscular Dystrophy. What does that mean? It means that if I have a son, they have a 50/50 chance of having Duchenne Muscular Dystrophy. We didn't realize they tested Asher's chromosomes, but we were glad to hear they were normal. Now, this doesn't mean for sure that he doesn't have Duchenne Muscular Dystrophy, it is just a good sign his chromosomes appear normal. We won't know for sure until he gets to his toddler stage. No matter what Asher is our miracle, and God made him for a special reason. So we pray he doesn't have it and trust in God's beautiful plan, and will love him no matter what! We don't let the fear of being a carrier get in our way. No matter what he is our beautiful gift!
Before I ended the call, I informed Dr. Pyle that we would be at the nicu in the evening to visit our warrior. He then told me he would be there as he was on call over night. He said he would sit down and talk to us more then. He was such a blessing to us, and I couldn't wait to talk with him later. God had definitely blessed us with an amazing doctor to take care of our son, and one who always sees the beauty out of any situation.
After James got home and mowed and we ate delicious chicken and dumplings his mom had made us, we got ready to head to the nicu to see our precious son and to meet with Dr. Pyle. We brought a cooler of breast milk as they were in need of more as his feedings were increasing and for his mouth cleaning. When we pulled in the parking lot, my back was a little sore so it was a little more painful to walk and stand. However, I held strong and walked without complaint because seeing my son meant the world to me always. Each morning I wake up and look forward to the moment I get to spend with him.
When we got in the nicu, the nurses were getting ready to weigh him, take his temperature, and change his diaper. James took his temperature and helped the nurses weigh him. It made him fill up with joy as he got to hold his own son in his arms as the weight was done. He weighed 3 pounds 8 ounces, but we figured he weighed that much due to not having a bowel movement in a while. They have been giving him glycerin to help him go, and he only had a little one up to that point.
While we sat and watched our miracle, Dr. Pyle entered the nicu and pulled up a chair right beside us, which was his amazing bedside manner. He sat and talked with us in his faithful, positive manner. He went over the items he had discussed with me over the phone, so James could also hear it from him with more detail. He explained the chromosome testing, his increased feedings, and his infection. What really meant so much to us was how he went into detail about the chromosome testing and the cause of the infection. He is one who enjoys his job, and he spent time researching the chromosome testing and the type of infection Asher had. Not all doctors take time to do this, but he does, even without us asking. That was and is special to us! He then told us how he would be caring for him over the next 2 weeks and how he has special goals and hopes set for Asher. His hopes are for Asher to increase to full feeding for his size, avoid use of steroids, and to get off the jet machine. This is what is special about Dr. Pyle. He showcases his faith in God and has the outlook that nothing is impossible with God. It is all in God's beautiful plan and in God's perfect timing. But he stays positive and knows God is right with Asher and working through him to heal Asher's lungs. Dr. Pyle is our angel.
After we got done talking to Dr. Pyle, it was time to head back home and say our good nights and loves yous to our warrior. As we opened up the giraffe bed so he could hear us, something beautiful happened. As I was telling him my love you, his one eye closest to me was trying hard to open. It opened a little and his little eyeball slid toward me as he was following my voice and knew his Mommy was there. I can't put into words the feeling I felt. It was just so beautiful ..... that is all I can say. I would to rewind and share that moment again. As always it was hard to leave him, but God was with him, along with my brother and all the Angels and Saints. He was protected and God was comforting him. We left with a smile knowing he was not only in the hands of God, but in the care of Dr. Pyle who God sent us.
When I woke up Tuesday morning, I called the nicu to check on my miracle. His blood gases were good at 5 am, so they were going to not take them until 5 pm. They use to do them 4 times a day, but with God blessing him with better levels, they currently were testing every 12 hours. His oxygen and pressures were at better levels too. He was doing pretty well with 14 ccs of feeding, but was spitting up some. So they were just going to monitor it and decrease amount if needed. Dr, Pyle also started him on a special milk protein to go with my breast milk to help increase calories and vitamins. So they were going to see how that went too. They were still waiting on a nice bowel movement, but the nurse informed me that it was normal as a preemie's muscles are weaker and bowel movements were work for them. I got off the phone and smiled as God was truly blessing my son, and my prayer warrior's prayers are so powerful!
In the late afternoon, my phone rang. Again my face lit up as Dr. Pyle was on the phone. He just always has a way to make me smile. He began by making me laugh by saying that the nurse came to him and told him that she just witnessed the biggest poop ever... Asher's lol. It made me laugh and smile at the same time, as he finally was pooping!! He then told me that he was doing well and being a tough little guy. He then asked how "Easton Monster" was. I told him that he hadn't took a nap all day and was still going like the energizer bunny. He said he must be like him, as he had been up since 2 am. Dr. Pyle is a true hero for still going strong even after being up all morning and day. He told me that he would call me on Wednesday afternoon to update me, and then Thursday he is in at night so he would talk to us in person as James and I visit then. I got off the phone again in a smile, because that is just what Dr. Pyle does... he knows how to make you smile in any situation.God truly works through him.
After James made us scrumptious tacos and took a shower, we were ready to head to the nicu to see our little miracle. When we arrived, we walked straight over to Asher to see him. He was as cute and precious as could be, and his blood gases were again good, all praise sent to our amazing and loving God! The nurses were about to do his temperature, weight, mouth cleaning, diaper change, and bath. We were again blessed as we got to participate in these things. I first took his temperature by placing the thermometer gently under his armpit. He didn't like it at first, but then he calmed down as I rubbed his arm to bring him my comfort. It was 98.6 degrees. Then, James got to give him a bath. He gently cleaned his eyes, hair, head, belly, legs, arms, and back. Asher wasn't crazy about getting scrubbed on his belly, but he loved when Daddy scrubbed his back. It must have been an amazing back massage. Then Daddy changed his diaper. Surprise Daddy!! Asher sent him a poop.. which again we celebrated as he needed to poop! He cleaned his tiny bottom and then placed a fresh mini diaper on his bottom. I then got the joy of helping hold him as his bed was changed. The respiratory nurse Nicky and I held him up. She held onto his head as all the tubes were up there while I held him at his bottom. His skin felt so smooth and soft. It brought joyful tears to my eyes as this was the first time I truly felt like I was holding him. I know I wasn't holding all of him, and not sitting in a chair holding him. But I truly was holding part of him, and it was so beautiful. I can't even put into words how it feels to hold him. It is like holding the most beautiful gift and miracle God could give me. I couldn't sing enough praises to God for that blessed moment. The nurses then weighed him and he weighed 3 pounds and 6 ounces. This was more of a weight that seemed right as he finally pooped. The night before he weighed more due to no bowel movements. After that, I got to clean his mouth with my breast milk. He loves that and licks the milk with his tiny tongue. That was such an awesome experience and a God Moment to forever cherish!
As we were getting ready to leave, we spent some time just cherishing Asher and watching him rest. The nurse said to look as it looked like he was smiling. We sat there and saw him try to smile several times. It just made us so full of joy and happy. Seeing him smile was a miracle and a gift. It made us know he was happy and strong in God's beautiful arms as God was healing him in his giraffe bed. He was happy to see us his Mommy and Daddy, as we were and always are so happy to see him and be with him!
I went to bed last night singing praises to God for blessing my son and always being with him and holding me strong. I held tightly to my Rosary and prayed that Asher would have a blessed night and that he would continue to heal him. I placed my full trust in Him as He knows best as He knows the most beautiful plan for Asher.
When I woke up, I pumped, ate breakfast, and then called the nicu to check on my miracle boy. I prayed his gases were good at 5 and that he was still fighting strong. The nurse answered and I heard her say, "I got some good news for you." I sat with a smile and in wonder what the good news could be. Was his pressures and oxygen better? I then heard her say, "Asher is off the jet machine." I sat there in awe, did I really hear her say that? That was Dr. Pyle's goal for the 2 weeks he was caring for him. I sat and praised God. Joyful tears hit my eyes. She told me that last night the machine showed he could be weened down on pressure. So, they took a blood gas to be sure. It was good, so they lowered the levels. The machine a little later then informed them that he could be lowered in pressure again, so they took another blood gas to be sure. It was good. So they decided to take him off the jet and try to let him just have normal oxygen and breathe on his own, which was Dr. Pyle's goal when he got off the jet. Well, Asher wasn't ready for that and struggled with it. So, they then placed him on a normal ventilator that was less support than the jet was. Instead of having tubing down his throat, he now has tubing through his nose instead. I still was in so much awe and couldn't stop praising our miraculous God. Yes, I hoped he could be on normal oxygen, but that time will come when God wills it as He only knows when Asher is ready for that. What matters are baby steps. God has heard our prayers and He is continuing to heal Asher and his lungs as He holds him tight in His loving, healing arms. He has blessed Asher off the jet, and has prospered him to a machine that is a step up and with less support. He is comforting him as He is healing his lungs. I will be patient as it is God's timing that is the perfect timing, and I have faith He will bless Asher free of any machine when the perfect time comes. God is truly beautiful and miraculous!
The nurse then told me that he had another poop, which was good. She then told me about his feedings. Dr. Pyle wanted to try 14 ccs along with the extra milk product. Well, he didn't tolerate the 14 ccs last night, as he spit up quite a bit. So Dr. Pyle ordered that he drop back to 12 ccs that would be fed slower to him, over a 2 hr period, along with his extra milk product. I thanked her for all the updates and told her that I would call her after lunch to check back on my little warrior. When I got off the phone, I again praised God for his miraculous works. I then messaged my prayer warriors that I have on my phone to update them and tell them to lift their praises to God and continue to pray that God may heal his lungs and let His miraculous works shine through Asher so all can see His healing grace and grow closer to Him. My dad responded to the message a little later around lunch by telling me on his way home he saw a yellow butterfly flutter across his windshield, and then another when he pulled into his driveway. Again, God and Josh were letting us know that they are with us always and especially with Asher. In addition, my friend who teaches with me, Carrie, messaged me that on Monday when working at the fair, she had some slow down time, so she was reading a blog post of mine, and as she did someone pointed out a rainbow in the sky. Another beautiful God Moment of His endless miraculous promises to lead us to His perfect plan.
After getting off the phone, I pumped, took a shower, and ate lunch. Easton was running around full of energy as he was excited because his buddy Maverick was coming over to play for a little bit. At one point, I even entered his bedroom and he had a couple pretend toy apples in a bowl. I asked him what he was doing. He said he was cooking apples for Maverick. I just love how he says Maverick's name.. it is more like "Mavget". There was a knock at the door, and Easton was all smiles as Maverick and his mom, my good friend, Ali arrived. Maverick and Easton played trucks, kicked a ball back and forth, played hide and seek, and just ran around while Ali, my Mom, and I talked and I updated her more on Asher. It was nice to get to visit with her and for Easton to get to spend some time with his buddy. Thank you Ali for taking time out of your day to visit and give Easton some excitement as he enjoys time with both you and Maverick. You and your family truly mean so much to us!
After Ali and Maverick left, I pumped and then called and checked on Asher. The nurse informed me that he was still doing good and pretty much where he was this morning. She said his oxygen level this morning as 36, and this afternoon it was 40. But she said not to be too alarmed, as he is getting use to this machine and they can adjust it as need be to best support him at his development. She also said that he was tolerating his 12 ccs plus his milk enrichment product as it was being given to him at a slower rate. I then asked her if he remains stable on the machine, since the tubing is in his nose right now instead of throat, if we could hold him. She said as long as he is stable and nurse feels okay, that it is a possibility as skin to skin time is so beneficial to both us and Asher. Also, as long as it isn't a bath night, as his temperature is harder to maintain outside after a bath. It made me again smile, as I look forward to the first time to truly hold him when God blesses us with that perfect timing. She then added how sweet and cute he was. It just made me smile. After I hung up the phone, I again lifted my praise to God as He is so beautiful. He is keeping Asher strong and his Mommy and Daddy too.
As I close this blog, I am looking forward to hearing my phone ring and talking to Dr. Pyle. I look forward to my dad meeting us at the hospital, and both my parents to get to see their miracle grandson. My mom hasn't seen him in a while, and has yet to see his beautiful eyes open. So, I pray that maybe tonight she gets that heart melting moment to cherish forever. I look forward most importantly to see my miracle boy from God above. I know God is holding him in His loving and healing arms along with Josh, Mary, and all the Angels and Saints surrrounding him, plus all the prayers from his prayer warriors are felt all around him too. Asher is a true miracle and gift from God. God and him amaze me each day as he is such a fighter. I can't put into words how special he truly is, and I know God has a very special plan for him on Earth.
Dear Loving God, I sing my praises up to You. You keep me strong as You are holding me through this miraculous journey. Thank You for the sunshine You brought us this morning as You continue to heal Asher's lungs and blessed him off the jet. Thank You for blessing us with a hero and amazing doctor, Dr. Pyle, to take precious care of our miracle son. May You continue to work through Dr. Pyle's hands, heart, and mind as he cares for Asher. Thank You for amazing prayer warriors who continuously go out of their way to pray for Asher and his healing. Please bless all of them with Your everlasting mercy. Thank You for time with a good friend today and time for Easton to share with his buddy. Thank You for the blessing of yellow butterflies and rainbows to remind us that You are here with us always and holding tight to Asher as You work to heal his lungs. Dear Loving God, our trust is fully in You as we know You will heal Asher's lungs in Your perfect timing. We pray that he may prosper on this machine through Your healing grace, and in Your timing be blessed off of it to breathe normal oxygen and have healed lungs. May Your miraculous works continue to shine through Asher so all can see the beauty of Your healing grace and grow closer to You. You are a merciful, loving, and miraculous God. Asher is so blessed to be comforted always in Your healing arms. We love You above all things. Amen.
"Lord my God, I called to You for help, and You healed me." Psalm 30:2
This quote was one on one of the Daily Bible Verse sites for today. It reminds me that God always hears us and answers in His most beautiful ways and in His perfect timing. It is God talking to me that He is healing Asher's lungs and Asher will be healed in His perfect timing. God sent us healing today as He blessed Asher off the jet and onto a less supportive ventilator. He is working His healing grace through Asher.
To all of you, Asher's amazing prayer warriors, you are so special to us and especially to Asher. Your endless prayers are so powerful and God hears them. May you sing praises to Him for His miraculous works of healing. He is an amazing and beautiful God. We ask that all of you may continue to pray for our miracle son that he may prosper on this machine, and in God's perfect timing, be blessed off the machine and breathe normal air with healed lungs. May God continue to shine his miraculous works through Asher so others can see the power of God's everlasting love and grow closer to Him. Let us join hands together in prayer with God, Josh, and all the Angels and Saints in this beautiful fight for our little warrior to be healed in God's beautiful and perfect timing. God keeps Asher strong and He is always with him. Asher is so blessed to have God with him and all your unending prayers surrounding him. That is what truly makes him the amazing warrior he is! All praise to our AMAZING God and all thanks to you his prayer warriors!
"O my strength! Your praise will I sing; for You, O God, are my stronghold, my merciful God!" (Psalm from today's Readings)
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