Christmas 2009

We were fortunate this year to have another nice Christmas.

On Christmas Eve, our tradition is to let the boys pick out a Christmas movie to watch. We sit down as a family, watch a Christmas movie, and open one present..This year, the boys all got new Pajama's on Christmas Eve...here are some photo highlights.




Here are a couple pictures of Christmas morning, after Santa came.

Holiday Break

Hi All,

It is the holidays. That means, two whole weeks without running to Ann Arbor for appointments. Hunter is getting a rest from all his appointments, including Physical and Occupational therapy. He is still moving forward with eating more and our new challenge is to get him used to different texture foods. He also doesn't like hot or cold foods. It must remain at room temperature. At some point, we will have to work around that obstacle. I don't have much to write, but thought I would post a video and a couple cute pictures.

The Video below is Hunter with his brothers. He loves his brothers and finds them so fascinating. Attached to this video, is another video clip. We caught Hunter standing for the first time. I wanted to share it with everyone!

Make an on-line slide show at www.OneTrueMedia.com

A couple cute pictures

The first picture is our crawling races down the hallway. Hunter wins!!


Hunter loves the Christmas Tree!


The McKeen Family wishes you a very happy, healthy, and safe Holiday!!!

The Angels that God sends....

Before I had Hunter, my special needs child, I saw disabled children and could never understand how parents of these special children could be at peace about the situation given to them. I always had sadness for these disabled or special needs children. Then, I had one of my own and I see how these parents are at peace about their situation.

I, truly, believe that God sends Angels to this world to help people get through a rough time. I believe that He has put me in the right place at the right time to allow me to be able to put things into perspective, or allow me to be able to accept things for what they are and to appreciate that they aren't any worse. This happened to me today.

I took Hunter to his Physical and Occupational therapy appointment at U of M. I walked into the waiting room, checked Hunter in, and sat down in the seat that Hunter and I always sit. We waited to be called back. The place where I normally sit is usually not congested, but today was different. There were two other women sitting there. One woman was alone. The other woman was sitting there with her son. The boy was older than Hunter and I later found out that he was 9 years old. Her son was finishing his Physical Therapy appointment and needed water. As he waited for his water, it didn't take me long to start a conversation with his Mother.

I noticed that the boy was wearing braces. It was the same type of braces that Hunter has. His walker was also beside his chair. I asked the mother, "I'm sorry, I'm just curious - does your son have Cerebral Palsy." I know that it was a pretty bold question, but I was very interested. She replied, "Yes, he does. He was born extremely premature nine years ago. His prematurity has caused him many complications, including cerebral palsy."

As I held Hunter, I forgot that Hunter looks like a normal child at this point. He doesn't wear his braces 24/7. He didn’t’ have them on. He also does not need his oxygen, so for her to offer that much information was very nice.

I responded back to let her know "My son was also born premature. He just got his braces last week and they ordered his walker for him." We talked more. I found out that both Hunter and her son were born at 24 weeks gestation. Then, out of the blue, her nine year old son cut in to our conversation. Please remember from my past blogs that I had a hard time accepting the braces because it made the Cerebral Palsy real. This boy wouldn't have known this. There would’ve been no way he could’ve known how I felt about Hunter's braces. The mom and I spoke about prematurity and our experience in the NICU only. I told her how awesome St. Joseph Mercy Hospital was. Her son was in a different NICU.

So, her angel, my angel, God's angel spoke and this is what he said..."I love my braces. I've had them since I was born. They help my feet and legs. This is my walker (as he pointed to his walker). I love my walker too. I can walk as fast as my friends at school. My friends at school are nice to me and they help me when I need help"

I wanted to walk up to her beautiful little boy and give him a hug because the words that he just said are magical. I've been so worried about Hunter's happiness in the future and how he will see the situation dealt to him. For a brief moment, I saw Hunter - 9 years from now - saying those same exact words. I held back my tears and the boy asked his mom if he could go to the bathroom.

“Of course”, she agreed. She helped him in his walker and I watched as he cruised himself into the bathroom. WOW!

Let's not forget about the other woman who was sitting there. I wanted her included in our conversation too. I asked her if she had a child with cerebral palsy. Her child was not sitting with her, but that's not uncommon for the parents to wait in the waiting room as their child is getting Physical Therapy. Sometimes, the therapist prefers the parents to wait in the waiting room.

She told me a story about her child as she held back her tears. Her child did not have cerebral palsy. Her child was 8 years old. He was born full term and was healthy up to two years ago. He was driving with a relative. The relative was not paying attention and pulled out in front of another car. The boy suffered a spinal cord injury in the accident. Her son will be permanently in a wheelchair. I told the woman to never lose hope and always have faith. I told her that I will pray for her child...and Hunter was called back for his therapy appointment.

I believe that God wanted me to meet that little boy. God wanted me to hear what that little boy had to say. He wanted me to feel at peace with Hunter's condition. Thank you God!

It was a day that reminded me to always appreciate the moment for what it is, to take nothing for granted because things can change within the blink of an eye, and to thank God for all that he has blessed our family with and all the lessons he has taught me.

A Week In Review

On Tuesday, December 1st - Hunter got his new AFO's (Leg Braces). We are slowly supposed to get him used to them by allowing him to wear them one hour a day and increasing the time he has in them. During the first couple weeks, we have to watch for redness around his ankles and feet. We don't want sores to form. I know I am wrong for feeling the way I do about these leg braces, but I can't help to feel that these leg braces are going to hinder his development. They keep his ankles at a 90 degree angle at all times. I try to image my limitations if I had to keep my ankle at a 90 degree angle for a couple hours of the day. It seems heinous to me. In addition, I need to find shoes to fit the AFO's. This also seems like it is going to be complicated. I guess I need to change my attitude towards them before Hunter picks up on this negativity.



Hunter also met with his Occupational Therapist. She feels that over the last week Hunter has went backwards in his development. I had the stomach flu followed by a head cold. I admit that I slacked off on working with him as I recovered. It's amazing how much he can fall backwards in one week. This again elaborates on my last blog about being paranoid to get sick. It affects everything.

On Thursday, Hunter met with his Pulmonologist. He is confident that Hunter can come off of oxygen day and night. Whew Hew. We are on a trial run. I'm confident that Hunter will not need it during wake hours, but his oxygen saturation does dip at night time. As long as he stays above 92%, he will be okay. I can't explain how weird it is to not put a nasal cannula on Hunter before I tuck him in.

Hunter had his first experience at a restaurant tonight. Some guy squeaked his chair on the floor, and Hunter almost jumped out of his high chair. Other than that, this was a big change for me. It is almost indescribable. I have never taken Hunter into a public place and today was the first time. There was a little bit of fear, over protectiveness, joy, and freedom. I asked the hostess for the table furthest away from people and took clorox wipes to wipe the table down. The sound of people coughing and sneezing still echoes and stands out and I look to see how far away we are from the cough, the sneeze, and whatever else resembles sickness and germs. Hunter is not the first micro preemie and I wonder how other parents cope with taking their kids into public places for the first dozen times. Does this sound too familiar to them?





On Friday, Hunter had his Physical Therapy appointment. She really does not believe that Hunter will be able to walk unassisted at first and into early-mid childhood. More than likely, Hunter will need the help of a walker. As he grows and becomes stronger, independent walking may be a possibility. The future is so unclear. She also cleared up the negative attitude I have towards the leg braces. Because of the Cerebral Palsy, Hunter's feet turn inwards. This means that the side of the foot, by the ankle - ligaments, tendons, and muscles would not be growing as they should. The inner part of the foot would be stretched out too much. The braces make the tendons, ligaments, and muscles all grow properly. Hunter will only need to wear them when he is trying to walk or stand. He will not be wearing them as he plays on the floor.

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.

To Botox or Not to Botox

Hunter’s physical therapists and rehabilitation doctor’s are highly recommending botox treatments for the cerebral palsy in Hunter’s legs. Hunter has mild to moderate spastic diplegia. This means that he has increased muscle tone in the lower part of his body. The upper body is not affected. In Hunter’s case, his right leg is more affected than the left. Although, the left still has some increased muscle tone.

The botox would be injected in the muscle. This would cause the muscle to relax. Botox has been done on other patients with cerebral palsy. In many cases, it has helped.

Hunter’s increased muscle tone has a developmental impact on his ability to sit independently, walk, stand, and crawl. If the botox treatments are done, there is a high probability that the muscles will loosen up and make the developmental milestones easier for him to reach. It sounds great, doesn’t it? I was so excited. I was ready to dial the number and schedule Hunter to have his first botox treatment. Then, a thought ran through my mind. I realized that I heard about the benefits, but nobody has explained the risk factors or side effects to me. I decided to Google it.

I need to explain what Google means to me. After Hunter was born, all these frightening diagnoses were being thrown at us. Hunter had Patent ductus arteriosus, intraventricular hemorrhage, Necrotizing Enterocolitis, Rentinopathy of Prematurity, Bronchopulmonary Disease and Pulmonary Hypertension…and it would’ve been so easy to read up on each one of these things. I discovered quickly not to do that. I found that the internet can give the worst case scenario. I made it a rule: never Google Hunter’s diagnosis unless I’ve been given a reputable website.

What do I do now? I Google: Botox treatments.

Apparently, I have not learned my lesson and this is what I found out:

1.) Botox is not approved by the FDA for the use in Cerebral Palsy patients and for the use in children and babies.

2.) Botox is made of the same organism that causes food poisoning

3.) If the Botox seeps out of the muscle and into the body, it can cause life threatening consequences. Also, if the botox is not injected correctly, gets into the body, it can cause a fatal reaction.

4.) I read somewhere that botox can cause respiratory issues. (the last thing he needs)

I know that they have to document every case of adverse effects. I can't gamble with my son's life even if the chances are slim. I’m very torn on what to do. I’m going to talk to Hunter’s Pediatrician. I have a lot of unanswered questions before I make a final decision.

On a lighter side, my house has been taken over by toys and there is no adults that live here anymore.

Never wake a sleeping baby

...after all, he is finally sleeping without oxygen. I got so excited. I took a picture of him sleeping without the nasal cannula.



I had to take a picture of his pulse oximeter too. His oxygen saturation was 98%. His heart rate was 75.

Fall Pictures

Saturday, October 17, 2009

I’ve been meaning to write for the last couple days. There has been so much that has happened since I last wrote that I don’t know where to begin. All I can think about is how proud I am of Hunter. He has come such a long way in the last couple months. I wish there was a way that I could express to him how proud I am and make him understand.

Hunter has been going at physical and occupational therapy pretty hard in the last couple weeks. It is making a huge difference in development. Hunter is crawling, playing, putting balls into baskets and taking them out. He has been so interactive and fun. His attitude is changing and he seems to like his new found independence. He has developed a screaming habit. He gets excited and screams. It is cute for the first hour! In addition to his physical therapy, I take him to an additional physical therapy short appointment. At this appointment, he does a baby treadmill. His physical therapist hooks him to a harness and makes him walk. It helps him to learn the one foot in front of the other concept. It also exercises all those muscles in his legs that are affected by the Cerebral Palsy. His hamstrings seem to be his biggest problem. But, he still has range of motion. Hunter is at PT and OT four times a week.

Hunter is doing very positive things with his legs. The future is still unknown. The more he builds the muscles in his legs, the brighter the future is getting for him. Again, Cerebral Palsy has such a wide spectrum of severity. Some children walk on their tip toes and this is due to muscle tone. This causes walking difficulty for these children. Hunter is able to place his feet flat on the ground. His Physical Therapist saw him this week. When she came over and started to work with him, tears filled her eyes. I looked over and she was crying. She couldn’t believe his turn around. In his home therapy session, Hunter was STANDING against the couch, playing with a toy that was on a couch cushion.

Hunter has a pulmonary appointment coming up. I’m really excited for this appointment. Hunter has been falling asleep and not needing the oxygen. His oxygen saturation stays in the upper 90’s while sleeping. Lately, it has not fallen below 95%. He has been off oxygen during the day (for the most part) for awhile now. He needed it while he slept and that was a hurdle that was hard to cross for him. He is doing it now! I almost don’t want to get my hopes up yet, so I’m not going to jinx him and say any more about this.

We have had a bout with illness and Hunter is taking Tamiflu (anti-viral medication). It has not affected him too severely or it was caught early and the Tamiflu stopped it before it became serious.

I am in the process of converting his Caring Bridge journal over to Blogger. In Blogger, I’m removing the password, and his journal will be public. I have thought about this and whether I wanted such a personal thing to be made public. Then, I remember back to when I was pregnant, on bed rest, knowing that I was in preterm labor, and seeking information on what it would be like to have a micro preemie. If Hunter’s journal, could give someone hope, support, and encouragement then it is completely worth it. If having Hunter’s journal public starts causing problems and I start getting weird people posting weird stuff, I can put a password on it. Blogger has many benefits that Caring Bridge doesn’t have. First, I can post current pictures with my journal entries. I can also post videos. I have some really cute videos of him that I haven’t let anyone see yet. I will send out an email when I’m finished. It will include the web address to Hunter’s page. After his page is done, I will not be sending Hunter updates by email anymore. His journal will be easily accessible.

I also wanted to remind everyone that the Fashion Show for St. Joseph Mercy Hospital is on November 12th. Tickets are $25.00, this includes a pasta bar. All profits go to St. Joseph Mercy Hospital. I am a speaker and have been busy writing, preparing, and practicing my speech. I’m SOOOO nervous! I already have stage fright! I can’t believe that I fit Hunter’s story into a 10 minute speech. That was a challenge. Hunter will be a model at the Fashion show. If you are interested, please let me know.

Friday, October 2, 2009

One of Hunter's physical therapist was working with him yesterday. Hunter's Cerebral Palsy is in his ankles and legs - mainly the hamstrings. She noticed that Hunter has not lost any range of movement in his ankles. This is a great thing. The hamstrings are something that would not prevent Hunter from walking independently. They have been concerned over the CP in his ankles, because that would. But, now that they know Hunter has not lost any range of movement in his ankles, there is a chance that he will walk independently (without the aid of walker, crutches, cane, etc). CP is not a progressive disorder. I have said this over and over again. But, after going through the trauma of severe prematurity and watching the obstacles they face, you learn to grab on to every positive and roll with it. It's really one thing to hear about it in an email, but to see it with your own eyes, can change the way you view everything! I've learned to turn this situation into a positive one. I grab a hold of everything positive and roll with it. I figure between a positive attitude, a determined mother, and a child's will to fight - I will do everything we can to see that Hunter can walk independently. Be thankful for every step you and your child takes, it is a true gift! On a separate issue, for those of you that have followed closely, I've been having a problem with a girl at Hunter's medical supply company for a year and a half. This girl is very insensitive to special needs, fails to sends Hunter's medical supplies on time or at all, and does everything to make my situation harder. I have let it go, or talked to her supervisor from time to time. It wasn't until recently that this took a turn for the worse. As you are all aware, Hunter has a feeding tube that was surgically placed into his stomach. Every three months, I need to change this feeding tube and put a new one in. This feeding tube is held in his stomach with a balloon like object full of water. If that balloon breaks, the feeding tube falls out, and the hole starts to close. It can close within an hour. If the hole closes, Hunter has to go through surgery..again! So, anyways - I told this girl at his medical supply company that I have a 30-45 minute (depending on traffic) drive to the hospital. By the time I was triaged, Hunter's feeding tube hole would close up. I would always need one at home for back up. She argued with me, as she normally did, and was convinced she was always right. At one point, she told me: "If it falls out, take him to the hospital, because I'm not sending you another tube until your three months is over with." She held the key to Hunter's world and wasn't afraid to let me know. She was completely uneducated and ignorant about medical supplies and the importance of them. So, last Saturday, on my b-day, and before my surprise party - guess where I ended up? I was at U of M Mott's hospital. I found out very quickly how fast that hole could close up. By the time his feeding tube fell out at home, and I got him to the hospital, the hospital could not get a new one in. They were talking about admitting him for another emergency surgery. A Physician Assistant from Peds surgery came down to the ER. She got a small catheter in the feeding hole, and Hunter was able to go home. Let's not mention that it was extremely painful for Hunter as she tried to squeeze a catheter in a closed hole in his stomach. My Dad came up to the hospital to be with me. My Dad NEVER cries. I think I only saw tears in my Dad's eyes a couple times my entire life. This was one of those times. Needless to say, I was not happy. If you ever experience pain in your child, knowing it was the fault of someone else, you will know the thoughts that went through my head that day. I knew that something had to be done with this girl. This WOULD NOT happen again. So, Monday morning, I called up to the medical supply company. I wasn't going through her supervisor anymore (been there, done that). I wanted the owner. I got the owner. Let's just say that I am happy with the outcome. I'm hopeful that I will not have any future problems. I explained to the owner that it was this simple: Hunter needs, prescription sent from doctor, I order, insurance pays, they ship -end of story! I told her that I don't want any drama in between those steps. She was upset that she worked so hard and this girl was misrepresenting everything she worked hard for. There have been other complaints against this girl. I was not the only one. For those that knew me really well, I was always a very passive and laid back person. I still am...until it comes to my son! I guess I've been too passive on this girl...up until now. Again, I'm faced with some feelings of guilt and I'm trying to convince myself that bringing this to the owners attention was the right thing to do. Yet, I'm still feeling guilty about it. I'm much too sensitive. I know. Hunter is still working hard through therapy. Every week, he is making developmental strides in the right direction. He has come a long way. Sometimes, it’s so hard to see because I'm with him every day. But, his therapists do a great job and pointing out the new things he's doing every week. He is responding very well to the therapy and the independent work I do with Hunter at home.

Tuesday, September 22, 2009

Occupational Therapy: (Feeding Difficulties)
We are doing messy play with him. This is where we dip his toys in baby food. We allow him to play with his toys with food on it. As he lifts the toys to his mouth, he will taste the food and our hopes is that he will gradually become comfortable with having food in his mouth.


Physical Therapy is a little more extensive.

Physical Therapy: (Cerebral Palsy - Muscle Tone)

Leg stretches are done twice a day. Hunter hates his leg stretches. I know he can feel the muscle burn. But, its so important.

We try many exercises. Another exercise we try is sitting Hunter on our knees; we support his back with our thumbs as he sits straight up. We, then, rock back and forth without allowing him to lean back. This helps strengthen his trunk.

We are also working with blocks and having Hunter put them in a bucket.

We are starting with the intense therapy with Hunter. Some items that

Monday, September 21, 2009

I'm awake staring at the TV. I'm not comprehending anything that's on the TV, yet I turn it to the most boring channel - the weather channel - hoping that I will be able to sleep sometime tonight. Yet, it just isn't happening any time soon. Why? My mind is racing again. It's racing over worry, fear, and the one million unanswered questions I have that no matter how hard I try to google the answer - it just has no results that fit into what I'm looking for. I seek that crystal ball because that would be the one thing that might be able to help me sleep. The closest thing I have is the magic 8 ball that can answer "yes" "no" "maybe so" and so forth. What box did I pack that away in back in 1989. So, I take my next plan of action: I get out of bed and come to my computer. With the hopes that maybe, if I write everything down, journal it - I may be able to sleep tonight. So, with that say...

Before my experience with extreme prematurity, I never thought about the person that sneezed in the grocery store? Or, the person walking in front of me that lets out a cough? I never had to think about this. I've always been healthy. Why would I think twice about this? I drank after my friends. I went to there house when they had colds. I got a cold, so what! In fact, my entire life - I have been a nail bitter. I started to bite my nails before I could walk. I have no recollection of ever starting to bite my nails. It occurred when I was too little to remember. Nail biting has to be the most nastiest habit and the easiest way to spread germs to oneself. Yet, I do it.

Now, after Hunter is born - I can't help but to think about that person that sneezes two aisles away in the grocery store. My thoughts are "Gosh, I hope she doesn't come by me. I don't want to take germs home to Hunter. I need to dodge out of here." Or, the person that let's out a cough within a close promixity of me, "Should I walk quickly in the other direction?" It's so hard to be around a group of people and not want to ask each one of them, whether or not they are sick? How long must I remain this vigilent about Hunter's health. How fragile is he now? The answer is: I don't know. So, where do I ever find that peace of mind when I'm around someone who sneezes, coughs, etc without worrying about hurting my son from being in the same place at the wrong time.

Now, there is a new set of worries, frustration, and all the unanswered questions back from the NICU days are coming forward. Will Hunter have cerebral palsy as a result of his prematurity? At the time he was in the NICU, the answer was: "It's just to early to tell" Now I know, yes, he does have cerebral palsy. What now?

Hunter started at UM MedRehab Milestones clinic today. And, I found out more about his condition. First, its not mild as I was originally told. It's more on the moderate stage. His cerebral palsy is the reason for his developmental delays. Meaning, the reason why he has less strength in his truck, why he is not walking, why crawling is a slow process, and even his eating troubles is a result of the CP.

And, to make matters worse. His eye sight is poor and this is hindering his ability to develop normally.

So, this is what Hunter is faced with. The strength in Hunter's truck is something they can work on, build up, and strengthen. But, for the first time today, I heard that it is highly unlikely that Hunter will be able to run, play, jump and be a "normal" child. As he gets older, his CP is telling a story. Is a part of me hoping this therapist has no idea what she is talking about? Of Course! Hunter is being seen by a CP specialist in the beginning of October. Here, they will make the determination, with the recommendation from the therapist, that Hunter needs braces for his feet and ankles. It will also be decided what medication to start Hunter on for his CP, and if Hunter needs a walker now. They said that Hunter is not a severe CP case. He will still be able to live independantly as an adult, but possibly with a walker.

I don't normally speak of my emotions. I usually leave my emotions out of any of these emails, but you know what - I just can't anymore. I have been through so much and I'm not scared for the world to see how this affects families, mothers, fathers, siblings, etc. I have learned something through my process. When you're speaking to the people in the medical profession about serious conditions that your child has or has had - if you show any amount of emotion - things start to become sugar coated. I have learned to hide my emotions because I want things straight forward. I don't want things sugar coated. The only time it was not sugar coated for me, Hunter was in the NICU. They were always straight forward and I highly respect each of them for that. So, with that said. My stomach was in knots. I was holding back the tears. But, got into my car and instantly started to cry. I sat in the parking lot for a good 45 minutes crying.

I just don't understand, why? I wish that I could take his disability upon myself and have him live a normal childhood free from all his hardship. In some aspects, its just not fair that my life was full of a happy, free, go lucky childhood, in which, I ran track - a distant runner nonetheless, and was a cheerleader through Jr. High and High School years. Now, I have a son that might not ever be able to experience half of what I did. And, that tears me up to the bone.

Then - God sent me a message. Right then, crying in the parking lot for 45 minutes, I look up. There was a girl in a wheelchair. I would say her age was anywhere between 7-11 years old. She was trached, with a ventilator attached to her wheelchair, and her mom wheeling her into the MedRehab milestones building. And, I first said to God..."Yes, I got your message. And, thank you because you have blessed me with such the most wonderful, amazing, strong, happy, loving, baby boy - that could possibly get through this and still be able to run, play, jump and do everything a normal kid can do. But, if he doesn't and he needs braces, inserts for his shoes, or a walker, he is such an amazing gift Lord, and thank you." It was then that I realized it could be so much worse.

And, this is why I can't sleep tonight. I keep thinking about me crying in the parking lot because my son might need braces on his feet, or a walker. I keep seeing the look on that mother's face as she was helping her daughter through the door. How dare I become so selfish to my own feelings and forget that I'm so lucky to have him. How dare I forget in that 45 minutes his entire road. How could I cry? It could be so much worse. And, if the only thing I'm dealing with is a walker and braces - he is and will always be a miracle baby.

Who am I to doubt the strength of God? He has proved to me that he does perform miracles. In reality, Hunter shouldn't be here. But, if its met for Hunter to walk, play, jump, and run - he is going too. I will continue to exercise with Hunter, stretch, and follow the advice of therapist and doctors. Most importantly, I need to find my own strength once again. There are times, like today, that really bring me down to my knees. Yet, God always sends me these messages. I, truly believe that God sends us all messages like this one. But, it takes us having our eyes wide open to see the messages he sends us. So, please friends - keep your eyes wide open. When you're having a bad day, look for those messages and be thankful for your ability to get out of bed each morning, take a deep breath, and go about your day with no special devices helping you. Wow! How lucky we are! Hunter is so lucky. He could've been that little girl in the wheelchair, trachead, and on a home ventilator. He isn't and he is getting stronger every day.

Wednesday, August 19, 2009

This will be a quick journal entry, but something that I wanted to make note of...

Hunter said "momma" for the first time tonight!

Sunday, August 9, 2009

I've been pretty lazy about writing in the journal. I think that summer has occupied my time in other ways.

Hunter has been doing better. It seems that since they have increased his Viagra dosage for his heart, he slowly started to improve. He is off oxygen again during the day, although he still needs it at night. I will wait until this next week, when he sees his pediatrician, and talk to him about what he feels about doing a sleep study on Hunter and his oxygen requirements. Although, I know this will probably be in the hands of his Pulmonary Doctor.

They switched Hunter from his Neosure formula to a Nutren Jr. Hunter still has his oral aversion. I wish that I could say that it has gotten better. But, is isn't and he is fed through his G-tube. Although, this sounds awful, I'm so thankful they he has the G-tube. It has kept him alive and growing well. He has gained 3 pounds since May. This is pretty impressive.

We are still working on his developmental delays. Hunter still has not mastered how to crawl and sitting up is still sketchy. He can sit up, but not for long. It is a work in progress. But, he has an excellent Physical Therapist, who is diligently working with him to get him where he needs to be on a development scale.

It has been a struggle. I will never, ever say this has been easy. But, it has been so worth it.

Tuesday, July 28, 2009

Okay, a quick review...the last message that I sent about Hunter's heart condition (Pulmonary Hypertension) wasn't the best news. In May, Hunter had an echocardiogram. He outgrew his medication dosage and they wanted to see how well he could handle his heart condition without the medication. The answer to this was that he couldn't handle it without medication. Hunter needed the Viagra to control the PH, the pressures weren't up on the right side of his heart, and he was requiring more oxygen. He was so close to coming off oxygen and this set him back. Ugh! I was really discouraged and disappointed. His cardiologist increased the Viagra dosage to accomodate his weight and waited to see if Hunter would get better. His appointment with the cardiologist was a lot better today. His pressures were a lot better and they tested him off oxygen. He passed with flying colors. I had them paint me a picture and this is what I learned. When they are looking at the pressures in his heart, they are looking at the systolic pressure on the right side of the heart. I think I explained this, but ... just in case...the right side of the heart is responsible for pumping blood into the lung. The lungs oxygenate the blood, pump it back into the heart and our left side of the heart is responsible for pumping the oxygenated blood to our body. Hunter's lungs are scarred and damaged from the two and a half months that he spent on a ventilator and oscillator (high pressure ventilator) right after his birth. In addition, His lungs were so premature that they barely existed when he was born. This created his lung problems. Therefore, the right side of the heart has a problem pumping the blood into his lungs to be oxygenated. Pressures build up in the heart because its working hard to get the blood into the lungs and this creates PH. In severe cases, PH can be fatal. This explains my concern for his heart condition and my excitement that its very well controlled. So, back to the systolic pressure. Babies blood pressure is a lot lower than ours. Today, Hunter's blood pressure was 87/39 (Perfect). A normal person's systolic pressure in there right side of the heart would be around 10-15. A person with PH has higher pressures. If Hunter had Severe PH, his systolic pressure in the right side of his heart would match the systolic pressure in his blood pressure reading (87). In May, Hunter's systolic pressure was almost 50. Today, Hunter's systolic pressure was 21. Therefore, he was 6 points away from being considered normal. So, this is great news and as he grows, his lungs will grow and the diseased lung with be replaced with healthy lung. This will result in the blood moving freely from the right side of the heart into the lungs where he will outgrow the PH and his lung condition. They believe this is happening. They're going to try to have him outgrow his medication. This will be over a 6 month period. They hope that 6 months will give us better results. The cardiologist gave the approval for Hunter to be taken off oxygen once Pulmonary agrees. Pulmonary was waiting for Cardiology. Cardiology has also reduced Hunter's restrictions on oxygen. We HAD to keep Hunter's saturation above 96 percent at all times because of his Pulmonary Hypertension. Oxygen helps to relax the blood vessels. This makes it easier for blood to flow. Cardiology believes that the Viagra is enough and oxygen is not needed. Cardiology said that if Hunter stays above 92%, they will be happy. I'm thinking that Hunter will be off oxygen soon! Hunter ALWAYS stays above 92%. I'm so thankful that Viagra works for Hunter. They're many babies and preemies that it doesn't work for and PH is fatal for them. It was a chance that I took and it worked! Oh, Hunter gained 3 pounds since May. You should see his chubby little legs. Oh my gosh! They are adorable. He was 21 pounds 6 ounces today. He has come a long way from his lowest weight ever of 1 pound 3 ounces.

Friday, June 5, 2009

Hunter has been doing well since his surgery to correct the g-tube malfunction. He was back to himself within hours after the surgery. He didn't have a fever. And, he wasn't crying out in pain.



Hunter got his mic-key button (g-tube) today. This makes things a lot easier. Although, my dream is that one day he will eat. We continue to work on his oral aversion every day.

Hunter's feeding problems has been his biggest obstacle, aside from his lungs. His lungs are improving. Yet, Hunter’s eating is not improving. We will continue to work with him. But, it is so frustrating.

Saturday, May 23, 2009

We brought Hunter home yesterday. But, had to turn back around. They did rule Hunter as having a viral infection. The pain was still a mystery until we got home. We noticed that his pajamas was soaked and had stomach acid all over them and him. His G-Tube had busted apart in his stomach. He had to have emergency surgery last night at 2:30 AM to repair. His surgery went fine and he is recovering. They said that he might be released today. But, the details are still sketchy. During the surgery, they took a scope down into his stomach. They saw that his stomach was highly inflamed from the G-Tube malfunction. So, he might have to be in the hospital for a day or two longer. They have to make sure that he can tolerate his feeds through his G-Tube. On the good side, he woke up this morning with no fever. And, we are hoping he will be breaking that soon. The inflammation of his stomach and the G-Tube breaking apart would've been the cause for all his pain. They said it would hurt a great deal. The poor baby! Thanks for all your prayers and support.

Thursday, May 21, 2009

Hunter got sick really fast yesterday. He was becoming more agitated and was crying out in pain. We brought him here to U of M and spent the night in the ER. He was admitted because they couldn't figure out what was going on. As they started to eliminate things, they were noticing that Hunter's pain was increasing and his neck and back was growing stiff. Meningitis was a red flag for them and they decided to do a spinal tap. They were almost sure it was meningitis. This had me freaked out. Fortunately, the results (cultures) were negative. Now, we are back to square one and still can't figure out what's causing so much pain and fever. I have a viral infection right now. I went to the doctor's because I had a sore throat and was achy! We just had a discussion with the doctor's here at U of M about Hunter. They are now leaning towards him having some silly virus, like me. Because he is a former micro preemie, his viruses may hit him a little harder than the normal person. So, they are going to continue to observe him and treat him for his fever. Thankfully, his influenza and RSV tests have also come back negative. Hopefully, he will be discharged soon. I am sick and tired of hospitals. They are taking really good care of him here though.

Friday, May 1, 2009

Hunter has been showing signs of improvement following his G tube surgery. Yesterday, I really started to notice it. I did not have to give him any Tynelol with Codeine. I can say that watching as your child suffer is one of the worst feelings in the world. Especially, knowing you can't take the pain away.



We still have Hunter on a continous feeding pump. The pump runs 24 hours a day and pumps food into his stomach at a slow rate. We have to set it at a slow rate and build up the amount as Hunter tolerates it. We are working on increasing the amount of formula he gets over a short period of time. This means that by increasing the amount he gets, he wouldn't need the pump so much. He would need the pump at night when he sleeps. And, 1 hour times 4 times a day. After he can tolerate that, we can start our old method of feeding him. This means that he would be on the pump at night. During the day, he could be gravity fed which only takes about 20 minutes. I know this is so confusing. But, we got it! That's what counts, right?

Wednesday, April 29, 2009

I think one of the hardest things is to watch as your child suffers and not be able to do anything about it. We are home now. But, Hunter is so miserable. I wish that I could take all his pain away and put it on me. They sent him home with Tynelol 3. I can only give it to him every six hours. After three hours, he is in severe pain. I am watching him very closely. I have him constantly hooked to his pulse oximeter, which is not something I usually need to do. When he gets upset, his heart rate climbs to crazy levels like 220 BPM. It is crazy! He isn't playing, or attempting to do anything. My poor baby is just lying there. Please pray that he gets better soon! This is awful!

We are also still slowly trying to get him up to his full feeds at home. We are moving slowly and working our way up

Tuesday, April 28, 2009

Hunter was discharged today. Although, we are having a hard time getting him to tolerate his full feeds. He is also in a lot of pain. It is horrible. The doctor ordered us to return to his normal schedule of feeding. But, he can't handle all of that. Tim and me discussed it. We decided that we were going to start slowly introducing food to his stomach. We hope to work our way up. I guess we are making the executive decision with our son right now. We have had so many people tell us so many ways to feed Hunter. We aren't sure what's right or wrong. We decided that we know our son the best. We also learned that slow is better when things aren't tolerated.

I have thought about this many times. Although, Hunter is not as critical as he was when he was first born, I can't decide which is harder. It's almost like a race. When you first start out on your race, your going full speed ahead. Towards the middle to end, you start slowing down and its not as easy as what it was in the beginning. We have also seen Hunter at his very worst. We have also seen him at his best. Sometimes I think that ignorance is bliss. If we didn't see all the things that could go wrong, we wouldn't worry so much about him now. Physically, emotionally, and mentally - I am slowing down and it seems like things get harder as you go.

Hunter gets his G-tube

Hunter has his surgery today for the G tube placement. The surgery itself went well. In fact, it was quick. One minute they were whisking him away. By the time we got down to the "big bird" in Mott's, they were telling us that he was done. They were able to remove the ventilator without any events. Thankfully, the PICU was not needed.

Then, we got up to his room and the tone changed a little. Hunter started to have jerking. It looked like he was having seizures..again. So, I called the nurse and had her come in. She saw what I was talking about and put a request in to Hunter's neurologist. They did an EEG. I still haven't got the results back. I'm sure I will get them back tomorrow. The jerking movements went away after 45 minutes though. The Neurologist was comfortable to say that it was a reaction from the medications given during surgery.

After that, Hunter was having a poor urine output. Okay, warning sign went off. This is what happened a couple times after his surgery in the past. I knew this wasn't good. The turned up the fluids and his urine output got better.

I got to talk more to the neurologist about Hunter's Cerebral Palsy diagnosis. I asked her on a scale of 1 to 10, how severe does she believe it to be. I told her 1 being the normal/most mild case to 10 being severe Cerebral Palsy. The number she gave me was 2. If he has Cerebral Palsy, I prefer him to be a 1 or 2.

Hunter has been extremely uncomfortable today. My poor baby cried so much. It was awful because it was a "I'm in pain mommy" cry. Ugh! I hate those. The nurses and doctors would not give him more than just Tylenol for the pain. I got a little frustrated and after much begging, pleading, and becoming a little pushy (if that's what you want to call it), I was able to get him the medication he needed. After he received the "good stuff", he fell asleep and was very comfortable. Needless to say, I was a little frustrated with the whole line they gave me about "were going to give your baby Tylenol and let him scream in pain". I just wasn't taking that to well. The "good stuff" was much better for him tonight.

Bare with my grammar. I'm exhausted! You might have to read between the lines to understand this email. I'm sorry.

He will be at U of M Mott's tomorrow, possible discharge then. It might be extended to Wednesday. They are slowing introducing foods through his "G" tube. Once he gets back to his full feeds and is tolerating it, he will be discharged.

Friday, April 24, 2009

This is a hard one for me to write because writing this makes the situation more real. I'm still in the process of trying to accept it. A part of me thought about stalling this announcement because then I could deny it - just a little bit longer. Then, another part of me felt that writing this email will help me to accept the situation and move forward. I can't tell you how many times I have broke down and cried from Hunter's appointment yesterday. I also can't tell you how many "what if's" has run through my head. As tears are still rolling, I can say this is agonizing. I received a difficult diagnosis for Hunter yesterday. Hunter had an MRI done a couple weeks ago. The MRI did not show anything significant. His brain bleeds were gone and there is no evidence of having them whatsoever. They had NO affect or damage to his brain. The condition never turned into PVL (a condition that turns your brain to swiss cheese following the bleeds). His cerebellum is a little small and it could cause a slight issue with balance. All this was great news. However, the neurologist examined Hunter. Hunter was diagnosed with cerebral palsy. It is a very mild form of cerebral palsy. The neurologist does not believe he will be confined to a wheel chair. He WILL walk, run, play, jump, etc. But, he might be a little clumsy doing it. It could also cause him to have a delay in walking or reaching certain milestones. She still believes that Hunter will walk long before he starts school. But, instead of walking at age 2, it might be age 3. When CP is mild like Hunters, he could overcome it all together. He will always have the diagnosis. But, you may never know it if I didn't tell you. This diagnosis will open up the flood gates of help for Hunter. Hunter is being referred to a rehabilitation doctor. In addition to the physical therapist comes to my house, Hunter will see another physical therapist that specializes in cerebral palsy patients.

A couple things about cerebral palsy: 1. it does not affect intelligence or cognition. 2. There are MANY different ranges of CP. Cerebral Palsy is not always the “poster child” in the wheelchair. In fact, it is very possible and common that children have CP and you would never know it. I think this is Hunter's category. At least, I hope. 3. Cerebral Palsy is not progressive. It will not get worse. It is what it is.

Sometimes I feel as though my inner strength is being tested. I have to admit this has sent me in a whirlwind. Yet, I still try to remain positive. I made an oath in the beginning that I was going to fight, alongside Hunter, through this damn prematurity and all that comes with it. And, I still will do this. Hunter has overcome so much already. I'm convinced that with everyday stretches, the assistance he receives from the doctors and therapist, and the work I do with him at home, Hunter will overcome this. It will just be one more miracle to add to his plate. So, now we stretch every day. Hunter's Cerebral Palsy is in his legs only. His official diagnosis is “Mild Spastic Diplegia”. He has normal muscle tone above his hips. I do have many things to be positive about. It could be SOOO much worse. At least, he was diagnosed and his help can start early in life. There are treatments for Hunter's mild case of CP. The neurologist said that the rehabilitation doctors will discuss Hunter's options. A lot of unanswered questions still, but if he was going to get CP, this sounds like the best type to get - a very mild form.

I will still say this over and over again. Prematurity sucks! It is heart wrenching! Please pray for Hunter that he overcomes this. Hunter's first steps are going to be a huge celebration! He WILL get there! I will make sure of that!

Sunday, April 19, 2009

Make an on-line slide show at www.OneTrueMedia.com

Hunter is still doing well during the day with no oxygen. Night (sleep time) has been difficult and he has definetly needed it.

Last night, I went into his bedroom to check on him. He was in a deep sleep and his oxygen was sitting at 97%. Although, 97% is a good number and would not warrant anything wrong, it didn't sit easy with me. 1. I knew Hunter was on oxygen, 2. When Hunter is on oxygen at night, he never leaves 100%. I walked up to his crib to see what was going on with little man. I found his nasal cannula out of his nose, oxygenating his eyeballs. This, however, will not help his lungs. Then, I realized..."OH MY GOSH, HUNTER IS SLEEPING WITH NO OXYGEN". So, I turned off the oxygen and put Hunter through another test trial of sleeping without oxygen. This has been so hard for him. Two hours came and went, Hunter remained at 96-97% oxygen saturation. Could this be? Could it be the time to take the oxygen away? Well I'm not convinced yet. I put the cannula back in Hunter's nose because I was falling asleep. I didn't want to leave him without oxygen without being closely monitored. Although, the monitor would sound off with this loud piercing noise if something was wrong, not only would I be awake - our neighbors down the street would also know that something was wrong. I didn't want to rely on a machine to let me know if my baby was okay.

See, when I'm testing Hunter - I can't just rely on a machine, I'm in his room checking on his color. Blue is not a good color for him, but - unfortunately, a color I have seen way to much. I also check his respiratory rate to make sure that he isn't working too hard to breathe on his own. I am also monitoring his heart rate. A higher than normal heart rate would mean that it is too much work for him to be off oxygen. A lot, goes into monitoring him. Last night he was doing great. His heart rate was staying low, his respiratory rate was normal. Although, I was in tears and overly excited that he is sleeping, with no oxygen, it will take more time to really say for sure if he has overcome the last leg of the oxygen journey. If not now, it won't be long. That itself, is so exciting. For the next couple days during nap, and nights at bedtime, I will leave the oxygen off. Pray for Hunter! We know he can do it!

I think about where we were a year ago. If somebody told me that I would be taking away his oxygen - I would never have believed him.

Although, I should be happy and I am...A part of me is scared. Taking away my baby's oxygen is nerve racking and stressful. How do I take away something that has helped my baby breathe his entire life? So, I am overly cautious and want to do it when the timing is right. I don't want to rush it. I want to be completely confident that when I take away his oxygen for good, its because he can do it. He can breathe without it. The doctors told me that one day he won't need it. I prayed for this day over and over again. But, I didn't know how scary it would be. So, cautious and safe is the word for now...okay, maybe a little paranoid...but, I saw that Blue is an ugly color. I never want to see that again. I, also, know that his very serious heart condition can come back if he doesn't maintain his oxygen saturation. Call me crazy...but, I'm not looking for another PICU stay. He's my world!

Thursday, April 16, 2009

In my April 9th entry, I wrote that Hunter will need a "G" tube surgically placed. He needs this tube due to a couple factors. The first factor being something called Tracheomalacia. That is the fancy name for underdeveloped swallowing muscles. The other factor is an oral aversion. Oral aversions can occur because when most babies are experiencing there positive and satisfying experience with a bottle, my baby's first oral experience was with a ventilator to keep him alive. This was not a postive, but negative experience, therefore creating an oral aversion. Those are the two main factors that are contributing to a feeding intolerance with Hunter.

We met with the surgeons. Hunter's surgery is scheduled for April 27th. If all goes according to plan, he will be admitted in the hospital for 2-3 days after surgery for observation. Hunter will need a ventilator for the surgery. Babies with Chronic Lung Disease can sometimes have difficulties coming off the ventilator after surgery. We don't suspect this will be problem, but it is definitely something to consider. If Hunter has a hard time coming off the ventilator after surgery, they will have a bed reserved in the Pediatric Intensive Care Unit (PICU) for him. Again, this is a small chance since Hunter's lungs are doing a lot better.

Monday, April 13, 2009

So, what happens the week that Hunter comes off oxygen - Yep, everyone in our house comes down with a cold. So far, Hunter isn't showing any signs - but close observation now is necessary.

Yesterday, we decided to quit monitoring him on his pulse oximeter during the day time. The doctor wanted us to monitor him for one week. I can't explain how scary it is to take oxygen away from a child that has always needed something to help him breathe. Because of that, I monitored him a little longer than a week. He has done so well and I'm just being super cautious, maybe paranoid a little. I'm mom and that's my job, right?

Last night, we noticed that the kids were sneezing and coughing. I was feeling pretty congested and tired. Tim was also feeling something. Today, I woke up to a full blown cold. I was hoping it was my allergies. It is just our luck. The week that Hunter comes off oxygen we all get sick.

Can you feel my frustration? I have to pray that he does not come down with anything. It could set him back if he does.

Thursday, April 9, 2009

One year ago today, I got to hold my baby for the first time. I could only hold him for 10 minutes, but it was the best 10 minutes of my entire life. I will never forget those moments. They will stay with me for the rest of my life.

I am having a difficult time this year, trying not to relive what all we have went through. Last year at this time, Hunter was extremely critical. I wasn't sleeping. It was just a really bad time last year. They told us that it was going to be a long road, and boy - they were right! It has been a long road. Hunter has been such a strong boy and has conquered so many obstacles, jumped over so many hurdles, and still manages to keep a beautiful smile on his face. He is amazing. He is an amazing little boy to know. He brightens up a room, just by his presence. When I think back to all that we have been through - the details are frightening. And, the only way I can explain how we got through it was by the Grace of God and Prayers. Our battle has been very much worth it, because we have Hunter. The scary part is that our road is not over. Hunter is still dealing with feeding problems. The "G" tube will be placed shortly. Our consultation with the pediatric surgeons is next week. This has been very frustrating. It isn't about sticking a bottle in his mouth and making him eat. It is not that easy. All the different signs to look for during his feeding time. You have to make sure that when he denies the bottle, you don't force it. If you force it, it could create more of an oral aversion. I have to mix rice cereal with the formula to make it a thicker consistency. This is because his swallowing muscles aren't fully developed. Aspiration is always a concern. A feeding tube is another story in itself. We have to make sure that the feeding tube is correctly measured, inserted into his stomach correctly, or the food could aspirate into his lungs - causing a major set back for Hunter. We also have to mix baby food with rice cereal to give Hunter the extra calories to grow.

Hunter is doing well without oxygen during the day (wake) hours. Although, he still needs oxygen at night or nap (sleep) hours. His oxygen saturation must stay above 93% during the day or night. During the day, he has no problems. At night, he drops to 90-91%. It is border line; but I'm not taking chances. A low oxygen saturation could make his Pulmonary Hypertension return. That is a serious heart condition that scares me.

Hunter went in today for an MRI. They ordered an MRI because of the seizures he had in January. They wanted to take a closer look at his brain bleeds back in the first. This was an event that I wasn't expecting. They treated it as if it was a surgery. The anesthesiologist was there, they put him under, stuck a vent down him, and did the MRI. They had to do this to keep him perfectly still during the procedure. Afterwards, he was sent to recovery. He was monitored to make sure he woke up, had no reactions to the anesthesia, and was able to hold food in his belly. He did fine. We were at the hospital all day though. We haven't received the results back yet.

Monday, April 6, 2009

I want to start with the good news first. It's always nice to start on a good note. Hunter appears to not need oxygen anymore during the day. Yay! He does really good throughout the day. The only time Hunter runs into trouble and needs oxygen is when he falls asleep. His lung doctor wants his oxygen level to stay above 93%. At night, he only drops to 90-91%. It's not bad, but enough to need the oxygen at night. Anything below 93%, could bring back his Pulmonary Hypertension. Pulmonary Hypertension is a serious condition that has to be taken serious. For now, Hunter will remain on oxygen at night only! I can't tell you how good it feels to carry my baby around the house without an oxygen cord trailing behind him. Okay, for the other news. Hunter had a swallow study. The results were that Hunter has underdeveloped muscles that help him swallow. It is causing him to aspirate some of his formula into his lungs. The only way he can build these muscles is too eat. This could be the reason he has needed the feeding tube this long. The good news: his muscles will develop with time and practice. For now, Hunter is growing out of his NG tube. He has lost the cannula off his face, the tape makes his face break out in a rash, and he won't quit pulling it out. There is no other option but to surgically place a "G" tube into his stomach. I am waiting for the pediatric surgeons to call me back. We will meet and schedule his surgery. I will keep everyone informed. Believe it or not, this will probably be the best thing for Hunter. It is amazing what these little micro preemies can go through, yet - what they can overcome. The feeding issue is a hurdle that Hunter needs to cross, but I know he can do it with time. He has already overcome so much! Okay, on a cute note, Hunter is getting his first tooth. It is so adorable.

Happy First Birthday Hunter!

You had a great birthday party. Grandpa Bubba, Great Grandpa McKeen, Great Grandma Brindamour, Tiffany, Paul, Chase, Morgan, Jennifer, Matt, Kendall, and Logan came over to celebrate.


Happy First Birthday Little One!

Tiffany cooked a yummy chicken dinner. You received two outfits and one pair of pajamas from Grandpa Bubba. Great Grandpa McKeen bought you an outfit. Great Grandma Brindamour bought you two outfits and a pair of pajamas. Tiffany, Paul, Chase and Morgan bought you a cute puppy that talks. Jennifer, Matt, Kendall, and Logan bought you some cute toys - the kind that you can hang up, reach for and chew on. You love doing that. Mommy and Daddy bought you a jumper and a dog that will walk and encourage you to crawl after it.

Also, today was the first day that you did not have your oxygen or feeding tube in. You did good without it. Although, it seems like you still need it at night. Mommy feels so bad to not have your overnight feeds, but the doctor really wants you to try to eat without the feeding tube.

Your day was full of everything I wanted it to be for you. You received so much love and smiled so much. You were a very happy baby today.

Your day ended falling asleep in Grandpa Bubba's hands.

Tuesday, March 31, 2009

Yesterday, I sent out the exciting news about his oxygen. There are big changes ahead. Not only are they telling me to try him off oxygen, Hunter's pediatrician wants the feeding tube to come out too. I know...jaw dropping! Here's the master plan...

Hunter hasn't been doing any better with his feeding tube. Things have stayed the same. He is not taking in the calories that he should be orally. This is why the feeding tube has been needed for this long. But, Hunter is getting stronger. The feeding tube is held on by clear like tape called tegaderm. Hunter has learned how to pull the tape off his face, pull out his feeding tube, pull his nasal cannula (for oxygen) off his face, and the round bandaid like tabs that hold the cannula on his face. I can not keep anything on his face. Needless to say, I am inserting NG (feeding) tubes 3-4 times a day. For anyone that knows anything about inserting a feeding tube, it's not fun! It's especially not fun to do it on babies. It's a complete nightmare to insert one on your own baby. I cry every time I have to do it. Seriously! I have tears rolling down my face. When he was younger, I only had to insert the feeding tube once every two weeks or so. But, not any longer. It is more difficult now. The days are becoming so frustrating.

So, to go more in depth...Hunter's feeding schedule consists of 4 feeds throughout the day and a continous feed at night using a feeding pump. This pumps formula into Hunter through the feeding tube for 7 hours overnight. It's a computerized system. I just have to set the settings on it. Using simple mathematics, I tell it how much to give to Hunter and the time to give it. I press start and it does it's job. I go to sleep, wake up in the morning, the bag that once held the formula is empty and Hunter is content.

The doctor is looking at all angles of Hunter's appetite.

The doctor wants to know if Hunter is not eating because he's just not hungry. Every couple hours throughout the day he gets food. At night, he is continously getting food. So, OUT THE FEEDING TUBE GOES. Let's see if he gets hungry! We are going to do this until Friday. I will see his pediatrician on Friday.

Also, Hunter was suppose to go in for a swallow study last week. That was rescheduled for this week. We are going to see if something is going on internally which is creating a feeding problem.

If Hunter still refuses to eat, the swallow study comes back good, and then the doctor can rule that he has an oral aversion and will schedule Hunter to have a "G" tube placed. A "G" tube is a surgically placed feeding tube into Hunter's abdomen. This is last resort. We are really trying to figure out something else first. If Hunter has an oral aversion, all we can do is continue to introduce food to Hunter, and work with occupational therapy.

An oral aversion can be caused my many things. One of those things being that Hunter was on a ventilator and oscillator for so long. This is all through the mouth. The tape to hold the ventilator is around the mouth. When he was a tiny micro preemie in the NICU, this could have sent a negative signal to the brain. The negative signal being that all things in and around the mouth are bad. Therefore, creating an oral aversion. The ventilator and oscillator can not be fun! The NICU was very careful to avoid this, but sometimes it can happen and we were warned about it. So, this would not shock me. But, I want to hold on to the hope that Hunter is just not hungry. Allowing him to get hungry throughout the night, might make him take more food during the day.

Again, Let's pray for Hunter