Sunday, September 13, 2009

Happy Birthday to Miles!!!



Miles came into my arms three years ago. He was HUGE!!! He weighed 9 pounds, 11 ounces! He had a triple chin, chubby thighs, and blonde, wavy hair. I was induced 12 days late, but had only gained 17 pounds, so we had no idea he would be so big!
Miles had health problems from the beginning. His breathing was raspy, he had apnea episodes at night, he spit up a lot...and then he was five weeks, vomiting every ounce of formula I was feeding him, and not breathing well. Roger and I spent the night awake Sunday evening because he was choking, and vomiting, and not breathing well. Roger told me to "get him to the doctor tomorrow and don't leave until they tell you what is wrong with him!" I had taken him to the doctor about every week, and was always told not to worry about it. Well, I took him the next morning, a different doctor asked me what was wrong as Miles vomited all over the room, he told me to take him to the hospital NOW, he was calling for an upper GI stat, so we wouldn't have to wait, then to wait at the hospital until he could talk to the radioligist and decide what they needed to do. I was so upset and scared! I thought he had a terrible case of reflux, but instead the doctor thought he may need surgery. So, I took him to the hospital, they took us back after a few minutes, the radioligist was formerly a pediatrician (huge plus for us), they did the upper GI, the radiologist told me what was wrong and drew a picture for one very distraught mommy, told me to wait there while he called our doctor, so they could see if they needed to admit him right then, or take him to the children's hospital in Orlando because he needed surgery NOW. I could not believe all of this was happening.
I ended up going to the pediatrician's office while they waited to hear from the children's hospital and then we were told to go straight to the ER to meet with the surgeon. Roger's aunt came over to stay with the kids, while Roger followed me to the hospital. We had to stop halfway there because Miles was vomiting so bad. I cleaned him up, and we hurried as fast as we could.
Miles was very dehydrated and only five weeks old, so they blew through both arms trying to get blood and an IV in. Then they blew through one foot, so the surgeon decided he would do it himself. He was able to get it in the other foot, but not very well, so they moved it to his head during surgery the following day.
Miles had a condition called Pyloric Stenosis. There is a muscle that helps move food from your stomach to your intestines. His muscle was becoming more and more enlarged, not allowing any food to pass through, so everthing was coming back up. Thankfully, surgery can correct this problem and then the baby is cured.
As we sat in the ER with the surgeon he became very concerned. He knew something more was wrong. He told the nurses, "Get an oxygen monitor, and apnea monitor on him now...I don't want to lose this baby tonight." Yikes! He heard what we had been hearing and telling the doctor about for weeks. I wanted to go back to our pediatrician and smack him!
Miles' monitors went off numerous times while we were there. He ended up being in the hospital for four days, which is not common for this condition. They couldn't figure out why his monitors continued alarming. They decided that he had reflux, too, which they believed would be cured when he healed from the surgery and then his breathing would become normal, so they sent us home. Well, he healed from the surgery, but his breathing did not become normal, and he continued having apnea episodes. Roger and I didn't sleep well for the first six months of his life. I continued telling our pediatrician about it, but he continued blowing me off.
Miles has had many other issues, too. He is a very unhappy little boy. His smiles are wonderful, but he has always been a very difficult child. For two and a half years he was on reflux medication. Just before he turned two I realized that a lot of his issues were sensory issues, so I talked to the pediatrician again and we began occupational therapy. Miles hated having his ears, eyes, mouth, face, and diaper area touched. He couldn't handle loud noises, so he was terrified (and this is no exaggeration!) of my hair dryer, the vacuum, the blender, trains, etc. He actually became much happier at 18 months when I took him off milk because of a fever. After two weeks of being off milk his eczema cleared up almost completely, and he laughed for the first time in his life. We missed out on a lot of giggles. We had no idea how miserable he was. We have since learned that he is allergic to milk and eggs.
I learned a valuable lesson...keep pushing!!! If you feel something is wrong with your child you keep pushing until you get some answers!!! Don't just trust the judgment of a doctor when you KNOW something is wrong with your child.
Here is the other thing I learned...when there is a family in need...whether they are sick, or have a child in the hospital...do everything you can to help that family. Bring them meals, babysit their kids, do something!!! I was in the hospital for four days with Miles and only a couple of people volunteered to help. I sat at the hospital in the surgery waiting room by myself as my newborn was in surgery because no one had offered to watch our other children, and my husband didn't want to ask. No one prepared meals for my family while I was gone. Not one single person from our church called to check on our precious baby boy. They knew about it, but no one did anything. I sat in the hospital hurt, lonely, scared, and wondering if anyone cared. Sad, but true. The only people who helped were Roger's mom (we love her dearly) and one of his wonderful aunts. We are so grateful for them!
I will admit that I was bitter for a while, but then God showed me the lesson I could learn from all of this. Yes, I have five kids, but I will make a meal, or clean someone's house, or watch their children, or whatever I can to help. I don't want anyone to feel the way I felt.
What can you do to help someone today?
So, off that soapbox and back to Miles!!! He is happier now than he used to be. He was potty trained, but now he is not, so we will get back to work on that tomorrow! He LOVES music! He loves to dance, and sing, and play his guitar. He loves Elmo and the Wiggles. He weighs 29 pounds, so he is a thin little guy. He sucks his thumb and is always looking for his "nother bwankie." He is smart! He gets overwhelmed easily, so we are still looking for coping strategies to help him. He knows his ABC's, Ephesians 6:1, and loves doing school with everyone each morning. He LOVES pizza and will eat 3-4 pieces, so guess what we are having for his birthday dinner! He just started eating cereal...he used to love cereal bars. He would probably drink a carton of chocolate soy milk every day if I would let him. He loves to take baths...and get dirty. He loves to swing. He has gorgeous blonde, wavy hair and beautiful blue eyes, and a big smile.
We love our Miles Augustine Shealy!!!

1 comment:

John and Elisa Seaba said...

WOW, what a scary ordeal to go through with your newborn!! So good that you kept pushing! How sad that noone from church checked on and offered help to you guys...such a reminder to always be quick to help when family's are in need or going through things! He is so handsome! (because i'm told by my 3 yr old that's what they are, not cute...handsome) :)