Rattling Cages

Hunter is rattling cages...

After about 20 or so seconds, Hunter gets up on his knees and really rattles things around. The background beeping sound you hear is his Pulse Oximeter. When he is moving around a lot, it will not pick up a correct reading and sound off. We were trying to put him to bed.

Photo and video editing at www.OneTrueMedia.com

There have been many positive things that I have been writing about with Hunter. I have to admit, not every day is positive. And, getting to these positive days is an uphill and sometimes treacherous course.

We have tried for over a year to get Hunter to take one bite of food. During this time frame, we have heard people make uninformed comments to us, like "just feed him" or "give him to us for the weekend, we will have him eating". Are they really thinking that they can make a difference in one weekend? What are they trying to say to us? Are they trying to say that despite taking him to therapy four times a week, and trying to feed him ourselves that we aren’t doing enough? Do they really understand the importance of not force feeding him and the fine line that I have to draw between a positive and negative feeding experience? Those are the people that I have realized are not my support. They have never had a child that has eating difficulties. Please let me clarify that just because a child won’t eat spinach does not mean that have an eating problem. It is a successful day when Hunter takes five bites of pudding or he tries a different texture food. For instance, he tries oatmeal instead of pudding or accepts cold or warm food items instead of pudding being at room temperature.

There are so many things that people take for granted in this world. One of them is the fact that there child is born full term and healthy. When prematurity strikes, it affects an entire lifestyle. When we get sick in our house it flip flops everything. Suddenly, one parent is stuck doing everything while the other parent goes into isolation in a bedroom to recover.

I have also heard people say that I'm being paranoid about our family getting sick. But, I have to just shake my head and know that those people have never walked a day in our shoes, or never watched their child fighting for their life because of an infection or virus.

If Hunter gets sick, not only does it affect his health and puts him in extreme danger, including hospitalizations and intensive care services, but he suffers hardships in his development. It takes away from his strength. If he can't breathe, he can't function - including eating. A simple cold could do this to Hunter. So, I ask myself - how paranoid am I really being about Hunter's health? Hunter already has developmental delays as a result of his lungs, prematurity, and underdeveloped organs, can he afford any other setbacks?

I have learned that people have a hard time accepting what is not normal. But, its the abnormal that makes this world turn. We are all abnormal with our own handicaps. Some handicaps are more noticable than others, but that doesn't change who we are as people. We learn from what is not normal. Hunter has taught me so much about the value of this life and I will forever be grateful to him for that.

As I have said before, prematurity is not something that I planned for. It was something that was given to me to deal with. Regardless of his health or handicap, I love my son more than anything and do the best I can to keep him healthy.

Chocolate Pudding...Yummy!

Hunter is eating....chocolate pudding, that is!

This comes after much effort and fighting to overcome his oral aversion. I think I'm learning the trick to feeding him and getting him to eat. So, my tricks are this...

First, Messy play with his hungry monkey. He responds well to putting food on his toy and allowing "him" to introduce the food to "his" mouth. If "I" try to spoon feed him right away, it scares him and almost too agressive at this point.



Second, Repetition . I feed him one thing over and over again. I make it something good, like chocolate pudding. His occupational therapist told me that it takes 30 times of tasting a flavor for the brain to register it and decide if its good.

Third, Perseverance and Patience. Despite our obstacles, discouraging and difficult days, I'm not giving up. I won't stop. He makes a hundred yucky faces and gags. I still put food on his toy monkey and allow him the messy play. He is now getting familiar and comfortable with chocolate pudding.



Fourth, I make feeding time fun for him. I love chocolate pudding all over the walls and floor. It shows how much effort goes into feeding him and how I will stop at nothing. I have such a mess to clean up when he is done…including him!



Finally, It really helps to have encouragement from others that understand the true meaning of both failure and success.

We still have a long road before the g-tube comes out. In the last couple days, Hunter has been eating chocolate pudding by the spoonful. This is progress and I'm so excited. My next plan of attack is to try different flavors. I plan on slowly introducing different foods, a couple times a day. He will soon try apple sauce, different pudding flavors, oatmeal, and speggatos. I'm not concerned about him eating healthy at this point. He is getting all the vitamins and nutrients from his tube feeds. My goal is to create a positive oral experience. I have run this through the doctors and therapists. They believe this to be a great plan.

They will be doing another swallow study next month on Hunter. The last swallow study showed that he aspirated thin and nectar thick liquids. The aspiration was caused by premature and underdeveloped swallow muscles. As with everything, these muscles develop with time. So, we are going to try again to see if it has improved.

Lessons Learned - Fashion Show Speech

After trying unsuccessfully for two years; my husband and I had given up trying to add to our family. Thankfully God brought my two wonderful step boys into my life when I married my husband. Then I heard those two wonderful words “You’re pregnant” and it was the happiest day of my life. You can’t begin to imagine how lucky I felt. I was on top of the world.

My pregnancy was going perfect with no health issues. Then, in my 21st week of pregnancy, my life changed forever. I started to go into pre-term labor without cause and was ordered to be on strict bed rest. I was told that my baby would not be viable until borderline 23/24 weeks. I had weeks to go before my baby carried a good chance. My dream of having a healthy child was crashing down around me.

My labor started to progress and I was admitted into the hospital at the end of my 22nd week of pregnancy. Dr. Ivacko, a neonatologist, came down to speak to us about having a micro preemie. She referred to it as a long and bumpy road. She went over everything with us. She told us the statistics about babies born at 23/24 weeks compared to later in a pregnancy. She told us what the chances of complications, disabilities, and the facts were terrifying. Looking back, as scary as it sounded, it still held no candle to actually going through it. That day, I could have never imagined how much respect I would have for her today.

My labor progressed to a point that it could not be stopped. On April 1, 2008, Hunter Myles McKeen was born by emergency c-section, at 24 weeks 5 days gestation. Hunter was 1 pound 12 ounces and 12 inches long. Dr. Weiner was the neonatologist on duty that day. He had his hands full, but he got Hunter through his first hours. I will always hold a special place in my heart for Dr. Weiner.

I was in a fog for the first couple weeks. Hunter was in the NICU for 119 days. The odds were against him. His stay was complicated and involved multiple surgeries, and very serious medical complications. He spent the first 2 ½ months of his life on a ventilator and oscillator. Hunter was sent home with an apnea monitor, oxygen, and a feeding tube.

I won’t ever forget where Hunter came from. I won’t forget holding him for the first time. I will not forget how his tiny body fit in the palm of my hand. I won’t forget how much went in to holding Hunter - how the nurses and respiratory therapist worked around many wires and tubes. And, how they had to make sure the baby stayed warm because he was too tiny to maintain body temperature. Initially, I could only hold him for 10 minutes. But, those 10 minutes, 10 days after giving birth to him, was something I’ll never forget. It was at this point I realized how much St. Joseph Mercy Hospital did for my family. They gave us our dream of having a child together.

Hunter is 19 months old now. I wish he was old enough to really understand how proud of him I am. He has such a strong drive. Every day, it is a struggle, a fight, and our journey has truly just begun. It is a struggle to get him to eat, to crawl, and to keep from getting sick. Hunter has an arsenal of medical supplies in his room. He has home oxygen, pulse oxygen monitor, a nebuilzer, nasal cannulas, and feeding supplies. We must stay on top of his medical needs.

Most importantly, we love him. He is so loveable. He is so happy. He amazes me with the way he is unaffected by all that he has gone through. Hunter can light up a room. He is truly an inspiration.

I will not forget the NICU, the sound of the monitors beeping, the smell, and the music that they play while you’re on hold waiting to talk to the nurse. The hardest thing I did was leave Hunter at the end of a day. I cried every night I walked out. I was so scared that Hunter would need me and I wouldn’t be there. I never knew if kissing him was going to be his last kiss.

Most importantly, I will never forget the lessons I learned in the NICU. Hunter had a brilliant respiratory therapist named Sharon. She taught me that in every negative situation, I can always find positives. At that time, my son was very sick and I could never understand what she was talking about. All day, her words echoed in my head. And, I tried to make sense of what was positive in this situation. Later that night – I thought about it and she was right. I knew that I had to start looking for my positives. I started with the easiest one: My son was still alive. I found many positives that night, including knowing her. I don’t know if she knows it, but that simple statement made a huge impact on me and the hardest time of my life. I still have my hard days and her advice still helps me to get through. I learned how to put my faith and trust in God. Miracle after Miracle, God got us through it.

Through this journey I have been fortunate and blessed to have met some of the finest people I will ever meet in my life, the NICU staff. They taught to embrace the little things in life, never take one minute or one breathe for granted. I learned that I have used a million different reasons to have a bad day, but never found one million reasons for a good day. At the end of the day when my kids are tucked into bed, and me and my husband can hear them peacefully sleeping, – it doesn’t matter that I was late for work, I got a flat tire, had bad hair day; I have my family safely under one roof, and that is what I have to be thankful for. In the end, I have my son, my family, my friends, my marriage and relationship with God is stronger; I’m truly the luckiest woman alive.

Thank you for coming tonight and supporting the St. Joseph Mercy Hospital Neonatal Intensive Care Unit and the Family Advisory Board.

Hard at work with PT/OT

First, I want to say how proud I am of Hunter and all his accomplishments. He is amazing. He is working so hard in therapy and at home with Mommy. Wow, he has come such a long ways since June...



My week started with a call from Hunter's Pediatrician. I highly respect Hunter's Pediatrician. I have to say that we are truly lucky to have such a wonderful doctor. I call on his Pediatrician for advice and I really take what he says to heart. His Pediatrician is recommending that I move forward with the Botox treatments. He thinks that Hunter could benefit greatly from them. It’s very rare to see adverse affects. After having a long conversation with him, I have decided to move forward and schedule Hunter to have the Botox treatments.

Hunter and his Great Grandmother were working together. Hunter started to pick up the reciprocal motion of walking (one foot in front of the other) He was taking baby steps with his Great Grandma and I was able to catch it on camera. This will be a picture I treasure forever...



His Physical Therapist was very happy to see this. She is recommending a walker for Hunter. It would be a nice, fancy, medical walker. She will be submitting the letter of medical necessity to the insurance company. The walker would help him build strength in his hips, trunk, and legs that the Cerebral Palsy is affecting. It would also help him learn the reciprocal motion of walking.

He also had an appointment to get fitted for his feet braces. This appointment was hard for me. I drove to this appointment with knots in my stomach. I have known for awhile now that Hunter has Cerebral Palsy, but this appointment felt like a big reality check for me. It is the first time that he needs a special device as a result of the CP. This makes me sad. I feel sad that the CP has affected him enough that he needs braces. I feel helpless that I can't do anything about it. I can't make it better for him. I would love too, but I can't. And, that sucks! On the other side of the spectrum, I'm thankful. I'm thankful that he is alive. I'm thankful knowing that the situation could be worse and it’s not. I'm thankful that he's getting stronger. Once again, positive thinking got me through this appointment. He got fitted for his braces. He didn't like it one bit. They made a cast mold to fit around his feet and ankles. They had to hold his foot at a 90 degree angle until the cast mold dried. He screamed and cried. I just wanted to pick him up and hold him. After it was done, I did pick him up. He wrapped his arms around my neck and was holding on for his life. It wasn't anything that would hurt him. I just think he didn't understand what they were doing to him and it scared him.



In three weeks (give or take), we should have the braces back.