Raising Justice

Hearts and Halos

2012-01-13T09:07:00.000-06:00

Over the last few weeks Justice has been fighting infections in all her pin sites. This, along with severe pain in her back and neck, has caused her to need a lot of heavy pain killers. We were also having to take her out of traction more and more to control this pain, infections and muscle spasms. Yesterday morning when the doctor call we decided the benefit we were getting from the traction were no longer out weighing the problems it was causing. Although it would have still been safe for her to have the spinal fusion with the infections, it was better if she didn't have them and without taking the halo off they were not going to even start clearing up. So during our phone call we decided to remove the halo ASAP.

This left us with two choices, to remove it in his office or go to the O.R. Removing it would only take about 10 min. but he could not give her anything for the pain if it was done in clinic. Option two was to be put under in the O.R. but Justice is now scared to death of the CARES Unit and considers all admissions there to be the same whether it's brain surgery or an MRI, if we're there she panics like it's a huge surgery. (I can't really blame her) But we chose the O.R. Unfortunately, Justice had her tube feeding all night so she had to wait 8 hours for them to put her under so that left 8 hours for her to panic.

In the end she did fine. The cleaned a lot of the infection out of the pin sites and they look and feel so much better. Hopefully we won't lose the progress we made over these last 6 weeks but if we do than God's will be done.

She tried so hard and did more than I could imagine a little girl could do. I am so proud of her. I wish she didn't have to have her spine fused on Monday. I wish I could just hug her and tell her she's safe and will never have to hurt like this again. When I've talked to doctors about her anxiety, they tell me to tell her these surgeries are making her better. I don't know if I can do that. What is better? To me, better implies this will stop and so far there's no end in site. When she was born they told us 3 months and she'll probably be much better. At 3 months she was recovering from huge surgeries. Then it was 1 year. Then 3 years. Then definitely by 5. That's when we made the switch from she'll GET better to she's GETTING better. Now she's been getting better for over 40 surgical procedures and 12 years. No, I can't tell her they're making her better. I just tell her they are trying to fix whatever it is they are currently working on. I want her to have hope but I never want her to think I misled her. She's a smart girl, she knows when they do a surgery it hurts, she will probably get worse before it heals and most likely there will be some side effect from it that was not expected but is actually worse then before the surgery.

I don't know...Jesus addressed how many times you should ask for forgiveness but I wish he would have said something about how many times a mother will have to plead with God for her child's life. Sometimes it's not about getting better, it's about staying alive.

(Monday, Jan. 16th, Justice will have her spine fused from T2 - L2 or maybe T3. Please keep her in your prayers)

Halos Are What Angels Wear

2011-09-24T02:59:00.000-05:00

Levi and I went to see Justice's orthopedic surgeon today for what we thought was going to be all about the details of her upcoming spinal rod surgery. We already knew it was scheduled for Halloween but for a surgery this big, it takes a few appointments to run tests, take x-rays, MRI's and what nots...
For this appointment we were told we didn't have to bring Justice so she spent the day with her beloved respite provider.

Well, details of the surgery was not what was given to us. After taking Justice's x-rays to a spine conference and gathering opinions from multiple doctors in his field, our doctor decided that Justice may be a good candidate for using traction before her actual spinal rod surgery.

What this means is they will attach a halo on her head. Then she will be in traction with weights pulling up on her halo. She would have to be like this for 4-6 weeks. She will be required to be in a specially made wheelchair or a hospital bed the entire time. Then after the 4-6 weeks she will have the spinal rods put in.

They can't tell us for sure that the traction will or will not help her in any way but are confident it will make her spine more flexible and therefore get a better correction when they put the rods in. She is going to need her spine fused and the correction they get at the time of surgery is it. They will never be able to straighten her spine any further so improving her curve by an extra 10-20 %may be worth the 4-6 weeks.

This is such a big decision for us to make. They could do the halo surgery on Halloween or later that week or she could just go ahead and have her rods put in. If she gets the halo, spinal rods would probably go in sometime in Dec.

We decided to ask Justice what she preferred and she said "Halos are what angels wear." She could not be anymore right. She is an angel and has more grace, strength and courage than the rest of our family put together. She said she wants to have the halo and try the traction because she wants her back to be as straight as possible.

We still will need her neurosurgeon to okay the halo and traction. He is not in his office this week so hopefully next week he will be back and help us make a safe decision.

Please continue to pray for our family and the doctors involved. This is not an easy case for them and I'm sure they want to give us the best advice and do what is best for Justice.

Hardest Question of My Life

2011-08-15T12:39:00.000-05:00

About a week before Justice had her open heart surgery we were on our way home from taking my son to school and she asked me "Mom, what happens if they stop my heart and can't get it to start again?"

I think at that moment my life stood still. She wanted an answer and I had to give her one but what would I say? I had no time to even think. I couldn't scare her but it had to be honest or she would know. So holding back tears I choked out that her heart was a muscle and they were going to make it hold still while they fixed it. Kind of like holding your arm or leg still for stitches or lab. Then, when they're done, they'll let it go to move on it's own again.

Little did I know how close we would come to it not starting again. Raising a child with high medical needs is so full of amazing moments.

Long Ride, Happy Life

2011-08-10T11:45:00.001-05:00

You wouldn’t think writing a blog could be so hard to do. I guess it’s the subject that makes it so hard to start typing.

Well last February, Justice had open heart surgery. The original plan was to repair her pulmonary valve. However, they ended up finding a large amount of scar tissue under her valve and an Atrial Septal Defect (ASD). They repaired both of these problems and were able to leave her pulmonary valve intact for now.

After about a week in the hospital she went home off of oxygen and everything was looking very good. Then one evening, about 5 days later, she started to complain of pain in her shoulder and back. She was playing a board game so we didn’t think much about it at the time. At about 3 a.m. she woke up my husband and again was saying her shoulder and back was hurting and he noticed at that time she was starting to have trouble breathing. He thought about taking her to the ER but she went back to sleep so we decided to wait until morning and see how she felt.

By 7 a.m. she clearly needed medical attention. I called the doctor and asked if we should take her to the ER here in our town or take her to her normal hospital about an hour drive away. He recommended we go to the ER here. After about 6 hours in the ER they transferred her to her normal hospital where she would have access to her whole team of doctors.

It was discovered Justice had developed fluid on her heart. She was put on a large dose of many meds and was put on a schedule to have Echo’s done daily. After about a week however, the fluid was not better and had actually spread to her lung. She was then taken back into surgery where they drained the fluid off both her heart and lung.

This I have to say was an emotional nightmare! I overheard staff talking about how amazing it was that it took over 10 tries to restart Justice’s heart after they took her off bypass. When I asked her Cardiothoracic Surgeon about what is “normal” he said it can happen that a person needs help getting their heart to restart but most of the time it doesn’t need help at all. And yes, Justice did need a lot of extra attention but it shouldn’t affect anything from this point on. This was a comfort to hear but I wish I never would have heard the details to begin with.

As for the second round of surgeries, we kind of got a Cardiologist that was very excited about getting to go into the OR. He didn’t seem to understand that this was my child and not just a patient of mine. At one point, (and the first time ever) I almost passed out! The way he described inserting a needle into my baby’s already sewn up chest and needing to be very careful to poke it into the sack of fluid but not jab it into her actual heart or let the her heart beat back against the needle made all the blood run out of my head. Luckily for me, some of our other Cardiologists, who have worked with me for years, were there and provided me support. Plus, our Cardiothoracic Surgeon also could tell that when I said “I need to sit down.” that didn’t mean “I’m just tired of standing here.” When the Cardiologist went to get a consent to treat form, the CT Surgeon gave me some wonderful words of comfort and assured me that Justice was safe and would be under his watch at all times. Nothing will go wrong but if for some reason it did, he would know how to fix it and WILL step in.

She ended up fine. It’s been a long recovery and we still have things to watch and take care of but she’s getting there.

She ended up bonding pretty tightly with her CT surgeon and even convinced him not to clear her for any other surgeries until the summer was over.

We are now planning to have the spinal rods surgery (that was supposed to happen 2 years ago) this fall. Plus, at some point in her future she will need to have her pulmonary valve replaced. Because of this, she will probably need multiple heart surgeries throughout her life but for now, we are taking every day with her as a gift. We are so blessed to have such a strong, loving person in our world and so many people that work so hard to give her such a high quality of life.

We are doing more things to make memories, like this summer we went on vacation to the Smokey Mountains and stopped by Kenny Chesney’s home town because she has been such a huge fan of his her whole life.

Isn’t that what we should be doing? We have enough stress. Taking very chance we get to celebrate the momentous (like her heart started again) or the smaller joys (like one of her favorite entertainers) in life.

Current Justice: 2/22/11 Open Heart Surgery

2011-02-22T22:38:00.000-06:00

Sorry it's been so long since I've written anything. Over the past few months Justice has been undergoing tests for scarring in her lungs. In the process of these test it was discovered her heart has become very unstable. In the morning she will be having open heart surgery to repair/replace her pulmonary valve and have some reconstructive work done in her right ventricle. Needless to say, this has been requiring a lot of our attention but as soon as I can I will try and write more.

Please feel free to leave comments, Justice loves to hear from people. It gives her strength and joy.
Thank you for your support.

Christy

Justice Logic on Brain Surgery & Learning

2010-12-07T10:49:00.000-06:00

"I think my neurosurgeon removed my school nerve because learning is much easier when you don't have brain surgery."

I told her we might just need to talk to that doctor about that school nerve and see what he has to say.

Balance and Perspective

2010-12-06T11:06:00.000-06:00

Many lifetimes ago I was an art major in college. For years now, I have thought of thousands of other majors that would have helped me more in my present day career as a mother coordinating the very complicated medical needs of my daughter and my son’s ADHD. Nonetheless, art was the path I saw myself taking at 18 yrs. old, a path that seemed to quickly come to a dead end.

During my brief time as an “Artist”, if you could even call me that at that stage, I did however, study balance and perspective…a LOT! Now as I watch my children struggle through their daily lives, I’m finding myself searching like a Renaissance artist for the perfect balance and perspective. Though I may no longer be looking with my pencil or oil paints, I have a much harder and deeper search. This search is not about becoming famous or gaining riches of money and fancy things, it’s about providing a stable home and loving environment for my children, keeping a marriage together under tremendous stress, pressure and grief, and not losing myself or my faith in the process.

How is it possible to do all these things? How can parents survive in this atmosphere? How does a marriage survive? The truth is sometimes they can’t. I know so many families that this beast of a life has torn apart. I can’t say it was their fault. It sure is not my place to judge them or even for a second say they didn’t try hard enough. In our society, we see people every day that do not have the strength to say no to a donut. These same people tell us their opinions about decisions we should and shouldn’t do with our children with special needs as if we (parents of children with special needs) should have all the will power in the world. Well, we don’t. We are just human beings trying to survive. I think one difference may be is we have no choice but to look harder for things that will bring balance and perspective to our lives and the horrors we see so regularly.

With Greatness comes Great Responsibility. This is so true but I also believe a lot of times with Great Responsibility comes Greatness. When I read about the victim of the Holocaust, I can’t help but see Greatness. These people certainly didn’t ask for the suffering and responsibilities that were forced upon them in the concentration camps but since then they have been a shining example of greatness raising wonderful children, grandchildren and showing the world examples of love and forgiveness.

I have to remind myself that I am so blessed. It is so easy to get frustrated and think we deserve better. When I look at girls Justice’s age at the mall, I want her to be healthy, popular and independent like them. I start to think how unfair it is that she is now on oxygen, getting a wheelchair, has had 31 surgeries and has to see a doctor at least once a week. But then I remember, Justice was born in one of the richest countries in the world and because of that she is still alive. I still get to tuck her into bed at night. When Justice needs a surgery, yes we have to go to many many appointments to make sure she can undertake the procedure but Justice gets to have the surgeries she needs. So many children in this world need surgeries they do not have access to, let alone state of the art equipment, world class doctors, a clean hospital, proper meds and toys, games, kid food, etc…just to make her recovery the best it can be.

Yes, I fear for her life at times. I fear her body will give out but I am blessed that I’ve never feared bombs, militias, my country or really even any country. I feel very safe. This allows me to concentrate on providing that balance and perspective for my family.

I’m not saying balance and perspective are easy, my dog alone can make me lose them but they are still very necessary. So this morning as Justice is vomiting, on a Pedialite 24 drip on her feeding pump, crying and screaming for mommy to get the pressure out of her tummy and make it start working again, I will keep reminding myself that it could be worse. We’re still here safe and sound and if things get too far out of control I have a wonderful hospital a phone call away. I’m going to take a deep breath, make sure she keeps her oxygen on, drink some more coffee and say a prayer to Our Lady asking her to ask her Son to give me more balance and perspective.

Our Journey into Homeschooling

2010-09-23T14:15:00.003-05:00

Homeschooling, everyone who does it has a story to tell. Some may decide to homeschool for religious reasons. Some because they feel their child/children will get a better education. Still others may feel pressure from their family or peers to do it. But no matter which path in life has led you to that place where you find yourself sitting in the kitchen explaining parts of a cell, you can always know for certain, EVERYONE around you has an opinion about your decision.

This is our journey into homeschooling.

Justice started her school experience when she was two months old. This was the infamous IFSP/MDT (Individual Family Service Plan/ Multidisciplinary Plan). At that time we started with an in-home teacher, a physical therapist, occupational therapist, a service coordinator and a nurse from some agency who didn’t do “nursing,” she was just there to help – somehow? And one more person from another agency; again, not sure why she came, we just had coffee together once a week but she was really nice.

This group went on for the first couple of years. After the first few (or maybe one) meetings, I started piping in with my goals and really making them work for their money. Then Justice was diagnosed with a server hearing loss. This was completely heartbreaking and very hard to except. We took a deep breath and although we didn’t totally buy into it right away, we added a speech pathologist, a deaf educator and two family sign language instructors to our team of teachers.
I was still setting goals and pushing each instructor to go well beyond average. I could see potential in Justice. From the outside looking in she was just a baby who vomited continuously, could hardly interact because she was so sick, and was not even close to meeting those baby milestones every parent judges their child’s complete success in life off of. However, I could see in her that someday, she would conquer this and when she does, she will fall back on everything we were teaching her now.

When Justice turned three years old the “in home” education had to come to an end and pre-school was to begin. This was a very hard transition to make especially considering Justice’s medical needs and the fact that my three-year-old only weighed about 25 lbs. Letting go and putting my very tiny girl onto a huge bus with giant seats at 6:15 am ended up being one of those times in life when you prove to yourself how strong you can be. She and I both survived and she went to a pre-school with a deaf educator as the “teacher” and a speech pathologist as the “helper” in the room. They did all her cares; they made sure all the kids were special, loved, educated and equal. It was wonderful. I still had many of my “but Justice needs….” moments but that’s just part of keeping the system improving.

After pre-school, Justice went on to Kindergarten with these same kids from pre-school. She had all the support she needed. She was learning right along with all the other kids in the school and then we had to move away.

The next school she went to was not prepared for a child with a hearing loss. Although by this time Justice’s loss was recovering, she was still a very visual learner and was greatly dependent on sign language for explaining concepts and keeping her focused and on task. Unfortunately, all sign language was pulled from her and there was little understanding of how she was taught to learn or how having a hearing loss as an infant and toddler effected her as a 1st grader. At this point, our family decided to move again to another larger town where services were available for Justice.

This decision to move was in some ways good but educationally for Justice, probably one of the worst and saddest things that didn’t have to happen to her. I was told, “She’s not smart enough to learn.” “We aren’t going to put our resources into her when we get 1% of our students we don’t have to test for the No Child Left Behind program. Since we do not have many children that fall into this 1% special needs group, we’re putting Justice in it.” They were not teaching Justice or putting money into providing for her special educational needs because she wasn’t going to affect their test scores. In addition, they didn’t believe her hearing loss affected her because she could answer them when they said hello to her in the hall. If she knew what they said then, why wouldn’t she know what the teacher’s saying? This was very sad given that deaf educators also were trying to stand up for Justice at this time and explain the difference between these situations.

On top of the lack of education, one day her 1st grade teacher decided to do something nice for Justice. She stood her in front of the class and pointed out all of Justice's disabilities. The class discussed them and then the teacher told the class to be Justice’s friend, to be nice to her because she can’t help it that she’s so different. Justice was so humiliated, hurt and scared! I couldn’t believe this happened to her and there was nothing I could have done to protect her or help her. I wonder if this teacher would feel honored if at the next conference she attends, the lead speaker brings her up front and points out where she’s carrying extra weight, her graying hair and aging skin. Then maybe to really honor her, pulls out her medical records.

Justice also wasn’t allowed to use the same restroom as the other kids due to her wearing a back brace and she may need help buttoning her pants. (Not a teacher’s problem) She had to walk about a block to the nurse’s station to use the restroom. On a field trip they didn’t bring a nurse and she was not allowed to use the restroom (again not the teacher responsibility) so she had an accident and was left in it from 9:30am to 2:30 pm. Then they walked the two blocks back to the school and had a nurse clean her up.

This is just the beginning. Justice wants to go back to school, not that school but some school. I hear people’s opinions all the time about how much better it would be for her if I would let her, so she could be with her peers. But I ask you this…..What do you send your kids to school for? Is it just to be with their peer? Her peers do not except her. And her peer’s parents aren’t teaching them that she really is their peer. She's not a little 5 or 6 year old or someone to feel sorry for but an actual peer they should treat like all the rest of their friends. Do you expect an education for your child at school? What would you do if the school decided that your child only needed to be there for social reasons and stops teaching your child to read and write? What would you do if you got a letter stating if your child misses any more days of school you will be turned into Health and Human Services to see if you're being a fit parent, even though your child was in the hospital?

I would love to send Justice back to school. Homeschooling was not my idea; it was actually our states department of education’s idea. However, it’s a personal decision, not easily decided upon. I would love to have a career, a paycheck, co-workers...but as a responsible parent, I have to do what is right for my child. Sometimes what is right isn’t always easy or the popular choice. What I’m asking of people is to have an open mind and to understand all the decisions parents make for their children are hard. We are constantly second guessing ourselves. What we need is to support each other whether our decision is to work or to stay home with our children, to send them to school or homeschool, to feed them organic free range chicken or McNuggets for supper. When were ready to judge, let’s all just remember Justice standing in front of the class having an adult point at her weaknesses. Then instead of judging just say “I don’t know how or why they do what they do, but they might have a good reason that I may not be aware of.” Who would have thought a situation like this would have factored into our decision to homeschool? Most people assume it’s just because I want to do it.

I want to send a HUGE thank you to all those teachers, therapists, nurses, doctors and support staff who did believe in Justice and in me. We would not be here without all of you. You have been a shining example for others to follow, keep on loving and helping our children. We need you!

Current Justice: 9/21/10 For Everything There is a Reason

2010-09-21T11:00:00.002-05:00

For everything there is a reason. That’s what I keep being told. In my heart I know that’s true or at least I have to believe for it’s what keeps me hanging on through the hard times but I don’t know if those are words I , myself, will be able to pass on so lightly anymore.

After going to around 30 medical appointments, ordering a wheelchair, unending bartering with specialty clinic schedulers, crabby receptionists, holding Justice down for all sorts of procedures and tests, numerous trips up and down the interstate, standing in line to copy my insurance and fill out redundant paperwork…..the spinal rod surgery has been called off for now!

Our doctor, although when I spoke to him on Thursday everything was fine and ready to go, as of Friday, he took indefinite sick leave so now we must start the whole process over with a new doctor. The new doctor is squeezing us in where he can but will need to decide for himself what treatment he would like to do.

Here’s my frustration, I have a child with feelings and emotions. This is the third time this surgery has been postponed and for a surgery this big, it takes some mental & physical preparing. She has been checked from top to bottom by grown men (doctors) for this and will now have to have it happen again. She & our whole family have lived for weeks with the fear of this surgery and reality of the possible negative outcomes it may have. I realize this is not something people want to talk about but this is how it is when you live a life constantly having these kinds of surgeries. We know too well the risks involved.

On top of all this, there is the re-planning that will have to be done if and when this new doctor decides to do the surgery. Setting up the nurses, getting her back into the therapy sessions that were cancelled, more trips down the interstate, and more money spent on hospital bills, gas and food. There are many people who have rearranged their plans for us to be able to be gone during the planned surgery week. All those people have been affected by this cancellation. To them I send out my deepest apologies and heartfelt thanks for everything they have done for us.

I’m sure in the end it will all work out for the best. My thoughts and prays are with our doctor right now. He is a wonderful man and I’m sure he had a very good reason for needing this time off. His staff is working very hard to figure out how to handle this situation. They are doing it with great kindness and patience. I’m sure this has to be hard with all us parents being so frustrated and disappointed.

Current Justice 8/27/10 Countdowns and Wheelchairs

2010-08-27T10:05:00.004-05:00

Justice has been after me the last week or so to make a countdown chart for her spinal rods surgery. I've been putting it off because a daily reminder that the date is getting closer might be helpful for her to cope but I have a suspicious feeling it might just be my one way ticket to the funny farm. Today however, I lost the fight and she got her chart. Seems she was making it with or without me and I thought it to be in my best interest if I typed one out on the computer rather than spent the afternoon scrubbing permanent marker off my wood floors.

We have 40 days. -- I wish I didn't know this kind of terror. It's really hard to stay normal, to give her and our son a normal day to day life when inside you just want to grab them every second and tell them how much you love them. I feel like a mother lion wanting to protect her cubs. Going to see any doctor right now feels like I'm surrendering her over vs. coming to them for help. I can't wait for this to just be done and to see Justice playing again without a major surgery looming over our heads.

Next week we also have to go and look at/pick out a wheelchair for Justice. Not that she'll need it all the time but her Lymphedema and Paresthesia is just getting so bad that she's having troubles walking more than 1 1/2 blocks without her feet swelling up and bruising. It's very painful for her and in combination with all her surgeries, the fact that she now weighs half my weight and I can no longer carrier her very far, we need to swallow our pride and do what is best for Justice. I just never thought this day would come. It really never crossed my mind she would someday need a wheelchair! It scares me how much we seem to be going backwards. I just have to put it out of my mind.

We will also be seeing quite a few doctors and specialists in the upcomming weeks. Keeping them all straight and remembering what each one needs to know is really a lot of work especially now that school has started. I'm finding myself going from fractions to parestesia to Chiari malformations to spelling words to genetic testing back to dolphins. Sometimes I wonder if I'm not already on that funny farm and everyone around me just isn't telling me because they don't want to upset me or ruin my fantacy world. :o)

The amazing thing through all of this is, as down and as low as it seems, I (or other parents that go through similar things) could never dream of giving it up. Oh for a cure, yes, but every moment I am so incredibly thankful she is my daughter. If I have to worry, to shed tears, to pray with my depths of my heart...What better reason could there be than for Justice?

Different Class of Courage

2010-08-21T21:33:00.000-05:00

My dad was a Marine in the United States Marine Corp. My husband was as Marine in the United States Marine Corp…..Correction……My dad IS a Marine in the United States Marine Corp. My husband IS a Marine in the United States Marine Corp. Why is this correction so important? Anyone who knows or has ever spent any time with a Marine quickly finds out, “Once a Marine, Always a Marine!”

I used to tease my husband there were two types of Marines. The clean cut, high and tight, buttons in a line, dress blues kind of Marine. The other, laid back, long hair, can go biker, can go hippie, prefer their BDU’s and combat boots kind of Marine. (My husband being of the first kind, my dad leaning more towards the latter, if you wanted to know.) Both types are equally wonderful, respectful & vital to us. Whichever “style” of Marine these warriors decide to have once they become inactive could never lessen the honor and sacrifice they made as they battled through whatever task or mission came their way.

When I see Justice, I see the same warrior spirit I see in her father. I have seen her in life and death battles that she was sure to lose. Yet, somehow, she came through. Her body bares more scares from her 31 surgeries than most warriors do. Still, she tackles the next day with determination to conquer and win.

Like Marines, I have also had the privilege to witness not just one person with special needs or one type of special needs but many. They all have graced me with their style and uniqueness but while never letting me forget their courage, strength, honor and sacrifice.

One day I was watching Justice and some other children with special needs learn to ride bikes at a bike camp put on by the place they all take therapy. I was very proud of Justice as she and most of the other kids were slowly learning. Then one boy caught my attention. He seemed like he just wasn’t physically able to do it. As the others were progressing through, getting on independently, balancing, pushing off and finally riding, he wasn’t able to begin the task. By the end of the week all the other kids were riding. It seemed like a failure that this boy didn’t learn also. Then as I watched and listened to him, I learned that he did not fail, I did. I wanted him to “fit,” to be like the other kids, to learn and do it right to the “normal” standards. What I failed to see is at the beginning of the week he could not get on the bike and now he could. What once was taking him over 30 seconds to lift his feet up to the peddles, now was only taking him 8 second. However the most important thing, the reason he was there at all, he had a great time and met some wonderful new friends…..But 8 seconds to lift your feet up….and to do it without complaining…..now that takes a strong person. Someone to admire.

I have another friend whose child had extremely complicated needs. He could not do anything for himself. I met my friend when Justice was only a few months old and at the time would vomit about 20 or so times a day. Day and night, we would work on feeding her. (But I’ve already written a lot about that haven’t I?) Anyways, one day I was talking to my friend as Justice was screaming in the back round and my friend tells me how sorry she feels for me. I couldn’t believe what she was saying. She feels sorry for me? Justice will talk, walk, read and write someday. Justice will say, “I love you Mommy.” Her son was never going to do any of that stuff. How could SHE feel sorry for me? I felt sorry for her! Then she explained to me. Her son may never do any of that but he never cries. He’s always happy. He will never know discrimination. He will never have hurt feelings. He just loves. That’s all he knows. LOVE… with nothing else. And isn’t that what all of us dream for our children? I know this little boy and his family also sacrificed a world but I have to admire the beauty in the way they choose to look at life. It may not be the same “style” as you or I would have but admirable none-the-less I say.

Sometimes I wonder what kind of warrior I am. Am I strict, firm and by the book? Am I tired of the protocol and just want get things done and over? Can I be persistent, determine and proud of my achievements? On the other hand, could I ever reach that master level? Force Recon. That place where I accept the situation, I adapt, I overcome, I live with my decisions and do it all for the love and well-being of others. I'd like to think of myself as this couragous person but in reality, I do believe that our troops and those people big or small fighting personal battles of no fault of their own are truely in a different class of courage.

Semper Fi, Little Ones, Ooh-Rah

Current Justice: 8/11/10

2010-08-11T12:37:00.000-05:00

Hello to all,

I am so sorry it has been so long since my last post. A lot has been happening with Justice this last month that has been keeping us very busy with tons of doctors appointment.

First, she since her brain and spinal cord surgeries we have had some set backs. She had developed new symptoms and difficulties that we are trying to deal with, accept and overcome but as time has gone on instead of getting better, she has in some ways become worse. It seems each month we have a new doctor and a new problem to address.

Second, in October, she is going to have spinal rods put in her spine to correct her scoliosis. Over the last couple weeks it seems I have been on the phone continuously with her whole team of doctors preparing for this surgery. I will try and use this blog to keep everyone informed as to how she's doing through this time but as you might imagine, my first priority will be to her but I will do the best I can for you also. I know how much all of you have come to care for her and will be concerned as to how she's doing.

Third, Justice has been diagnosed with a condition called Lymphedema. It is very mild right now but is effecting her feet and her ability to walk for long or even moderately long periods of time. There is no treatment or cure for this condition so we could use a lot of prayers right now.

As parents, what do you say or do for your child when they are in tons of pain and there is nothing you can do for them and it's never going to go away? We are so blessed that Justice is who she is. I wish all of you could meet her. With all that she goes through, she still manages to have such a loving, joyful, normal spirit about her. As all this weighs me down, she just wants to go swimming. As others look at her with discrimination, she looks back at them with a smile because she is happy to meet them. I have so much to learn from her.

Thank you all for your support,
Christy

Dear Hell’s Angels, I think I have your Dog…

2010-07-13T10:28:00.000-05:00

One year ago, my family and I went to a baseball game and met a dog that needed a home. We had been looking for a dog for about a year or so but each member of the family had their own wishes to meet. This dog however seemed to fit the bill for most of us so the next day after my husband got off work we went down and adopted the cute, sweetie, calm, droopy yet a dog’s dog…dog.

After picking him up, we went out and got supplies, with him in tow, took him for a long walk and then brought him into the house. All was fine until we took the leash off. Without going into many details, let’s just say, I had to reclaim the couch…and the bed…and the other couch…and just about everything. Then he had a snack of about 10 cupcakes at lightning speed, which sent him on a sugar high that would impress the most challenged ADHD child.

Soon I was on the phone with the place we adopted him from, only to find out he was our problem now. They were sorry we weren’t given all the facts but such is life. However, they did give me the number to an excellent trainer. This ended up being one of the greatest blessings I could have received.

Our dog’s name is D.O.G. pronounced Dee-Oh-Gee. You have to say it fast. If you say it to slow, he doesn’t know you’re talking to him. He can’t spell so he doesn’t know his name spells dog, therefore, he doesn’t answer to “Dog” only D.O.G. Really, his names only fun for us humans. You’d be surprised how many people don’t realize that.

So anyways, about two weeks after adopting D.O.G. we found out Justice needed brain surgery and D.O.G. was completely out of control. He wasn’t mean, just young, energetic, disrespectful and male. He’s a German Shorthair Pointer mixed with a Bluetick Coonhound. He LOVES to hunt, spot prey and very loudly tell me about it. He would howl/bark for hours. If a squirrel moved, a rabbit jumped, the cat came in the room, and out of the room, etc…..How could I have this with Justice going to have BRAIN SURGERY?

Surprisingly, training helped a lot. We came home from the hospital and he was perfect. He’s actually better when someone’s sick or hurt. It’s when all is well that he feels he has to move on or his inner devils gets the best of him.

Have you ever noticed how rough tough bikers do all these rallies for children with special needs and donate a lot money to hospitals for children? These same scary people you wouldn’t want to walk down a dark street alone with end up having such a kindness in their hearts. Yet, they don’t always show this to the world and they never seem stay in one place very long. As D.O.G. jumps fences, brakes out of his collars and has even been known to break a lock or two just to be free to roam, there’s also a kindness. D.O.G. will lay his head on my lap and show me so much love. His energy demands attending too and in turn it saves me from spending all day worried about the next surgery or doctor appointment and all the things that could go wrong.

Most days his gifts to me are hard to see. Cleaning up the bathroom trash for the third time seems more like a chore than a gift. Someday, when he’s older, I know I will look back at this dog and say he was by far the best dog I’ve ever had in my life. Maybe not if he continues to eat my brand new MaryKay makeup and shoes but someday I will see how much he helped me raise Justice. Hopefully, that is, with bikers in mind……

The Great Dilemma

2010-06-11T15:33:00.000-05:00

In this picture Justice is holding up her hair she donated to Locks of Love. This was only a couple weeks before she had brain surgery. She wanted her hair to go to a good cause....I couldn't ask for a more perfect daughter.

As I have said from the very start of this blog, these are my stories. Not always pretty, not flattering by any means but real, sometimes hard to relive stories. So why do I write about things I would rather not even think about? To help. It’s that simple. To help.

My goal is to help the mom or the dad that feels the guilt, the self- doubt, the exhaustion, being overwhelmed, overjoyed, extreme thankfulness, extreme anger and know they are not alone and they are normal for their circumstances.

My goal is to help doctors and other healthcare provider provide better care by letting them see parent’s point of view. I believe great changes can be made to improve the quality of care patients receive, especially our children, but I believe in order to reach these goals, we must first stop and really listen to each other. I have not found this to be possible inside a doctor’s office. My $450.00 in a specially clinic gets me a 30 minute wait or more in the waiting room, a height, weight, 15 minutes with a doctor, a “how’s she been doing”, “let’s try her on this” and “come back in 3 months.” Yes, we have a few, or maybe 2 doctors that take more time or ask more about her than that but we have around 15 or so doctors. I always leave appointments feeling that something has to change, if nothing else, what am I paying them for? Why can’t I just e-mail them this information for ¼ the cost? I mean, if they’re not even going to make me feel like they have all the facts about her, why go to all this trouble. I end up not trusting their treatment because I don’t feel like we have fully listened to me and they may be missing something important. Then there is other times when they tell me to do things without asking me first if I’d be comfortable with it…..Yes, I believe we would both benefit from a better understanding of where the other side is coming from.

My goal is also to educate friends and family of people with special needs. I wish them to understand that we, the families of special needs children, are trying to juggle two lives. One that is the same as the rest of the world’s with soccer practice, school, shopping, cooking and all of the normal trials of life. The other with doctors, nurses, hospitals, medical supplies, procedures, therapies, embarrassing moments, explanations and never ending advice. I hope other people’s families and friends will read my stories and maybe show more mercy or compassion for their family or friend who has a child with special needs. There’s never a good time in conversation to say the things I’m talking about here. If you do, you sound like your having a pity party. I hope to say it for them. So you will know how life is for them and they won’t have to say it.

Here’s my dilemma, someone has been coping my blog. They are taking my creative writing style and even my personal tragedy and using it as if it was their own. This, needless to say, it is very upsetting and hurtful to me. As much as I wish to accomplish my goals, I do not intend to give someone a book to write. To think they are turning my life struggles and my daughter’s extremely painful ordeals into their fictional blurbs is heartless to me. Therefore, if you could bear with me, I do plan to continue to write but the story cannot be in order as much as it was before. I hope to still make Raising Justice very enjoyable and educational. Thank you all for your support it is much needed.

I Am the Child

2010-06-02T17:24:00.000-05:00

-I write a lot about Justice and our struggles with Noonan Syndrome but as you know that's not the only disability out there. Parents, children and loved ones struggle with all kinds of special needs from everything from Downs Syndrome to Deafness to Depression. Our uniqueness is how we teach each other and what centers the world. As sad and hard as it is to watch our children suffer through their trials, I thank them for their courage, strength and generosity of sharing the precious gifts of their lives with the world.-

I Am the Child

I am a child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much…whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation , cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs or comments about the world about me. I do not give rewards as defined by the world’s standards…great strides in development that you can credit yourself with. I do not give you understanding as you know it. What I give you is so much more valuable…I give you instead opportunities. Opportunities to discover the depth of you charter, not mine; the depth of your love, your commitment, your patience, you abilities, the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf. I need to go to the bathroom. Oh, I’ve dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to stand upright, to put one foot in front of the other , to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s standard. What I do know is infinite joy in simple things. I am not burdened as you with strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all, I teach you hope and faith. I am the disabled child.

-Author Unknown-

Current Justice 5/18/10

2010-05-18T09:52:00.000-05:00

There are times in life you need to share life and there are times when you need to take some time to process life. This week I think I need to take some time to process life and enjoy a little ignorant bliss. Justice went in yesterday for a sedated MRI. The test and recovery went very well, the best it's ever gone for that matter, but the fear of the results are still very real and present in our lives right now. If this were our first bout with illness or brain and spine abnormalities I could probably fully convince myself that all will be fine. However, this is not our first time and the memory of holding my beloved daughter's hand while she suffered so intensely is still very fresh in my mind. I have no idea what, if anything, they will find on this MRI but again I'm going to ask you for your patience with me and my lack of writing while I take yet another week off. Please enjoy another piece of writing I have found in the mean time.

Welcome To Holland

2010-05-17T17:07:00.000-05:00

-I did not write this but I felt it explained very well what if feels like to have a child with special needs so I thought I would share it with all of you-

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland? I signed up for Italy! All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.

-Emily Perl Kingsley

As I Ponder.....

2010-05-10T18:12:00.000-05:00

As I sat and pondered my last post, I got to thinking, have I misrepresented my opinion of the doctors on our team? Have I given people the impression I do not like them? I really hope not. We actually have a "Dream Team" of some of the best doctors in the world. I feel extremely blessed to have them caring for my daughter. However, as I said before, my life is like an antonym. I both admire these doctors for the skills they posess and get very frustrated with them for their sometimes lack of understanding. My goal is to provide a better understand for people, doctors included, about what it's like for some parents from a parent's perspective. Like a doctor pointing out all that is "wrong" or "abnormal" with our children in order to eventually help them, I too am only trying to bring to light an aspect of healthcare that could be improved and/or better understood.

My Naked Soul

2010-05-10T10:36:00.000-05:00

Well, I said I would be honest in this blog. As painful as it is, I agreed to show the truth behind raising a child with complicated medical needs so here it is. This will probably be the hardest blog I write but I’m going to chance it. After a long day of reflecting and a long sleepless night, I have come up with two reasons to share such a personal feelings and emotions with the world. Number one, others may feel the same and be unaware that they are not alone. The second reason being, this is a great burden to carry. One we do not show the world. We are expected to smile, dance and celebrate with the same exuberance as the rest of the world; however, they do not understand the black cloud with a shiny silver lining we have always hanging with us. Our highs are higher but our lows are lower. Yet, we must balance it out, not for us, but for the rest of the world. I hope to explain our “normal” a little more clearly and have people understand that it’s okay if we’re blue for a moment or brought to tears watching a boy with a walker learn to ride a bike. I want everyone to be feel freer to express their “normal.”

As most of you are aware of, Justice was born on Mother’s Day 11 years ago. This year her birthday again fell on Mother’s day. We have always tried to look at this as my Mother’s Day gift. In many ways, it was but in turn, I end up feeling a lot of pressure to only look at this day as a gift. I try to focus on her beautiful smile, the silly things she says, the almost heroic strength, fortitude and patience she has but I almost always end up on the edge of angry. It’s easy to say, “focus on the positive” but Mother’s day 11 years ago was a traumatic event for me. When I think of Mother’s Day, I can’t help but see a doctor sitting beside my bed fidgeting saying “Some moms just don’t go home with babies.”

Since then, yes, I’ve been blessed with higher highs than I could have ever imagined but they say for every negative comment or event it take four positive to counter it. I think it takes more than four to counter having to take care of a six inch wound on the back of her skull. Or the three times I’ve had to tend to the four inch wound from below her breastbone to below her belly button. Or the two + inch one on her back or the two inch one on her side. How many positive comments does it take to counter being covered in her blood? Or having whatever just came out of the wound from the last surgery just blast all over you?

I have had doctors say the nicest things to me. But, unfortunately, most of the time they either say nothing or they questions your motives for asking questions and frequently make you feel like you are an over or under reactive mother who is not taking care of her child very well. Then they unleash a wealth a demands, treatments and responsibilities without any regards or understanding that this is your child, not your patient. Aside from a cure for Justice, a true wish I would want granted for myself is to work for better education of doctors and other health care provider to what the parents actually go through.

Most of the time, I feel like I’m a walking antonym. As I sat in church yesterday, I looked at Justice and wanted to stand up and shout, “Do you see my daughter? Do you know how blessed she is? What did I do that God would choose me for such a special mission of His? Thank you, Father! Thank you for loving us and giving us the strength to survive this and not taking her from me this year. THANK YOU FOR NOT TAKING HER FROM ME THIS YEAR!” Then I see the healthy little girl in front of me and as my heart is still full of thankfulness, it is also full of anger. “Why do You do this to her? Why do You do this to me and Levi and Cy? What did we do to deserve this hell? I just want to buy her pretty dresses like those that that girl can wear. Why do I have to beg for her life so much? We all are celebrating here, we all go out to eat and yet, You make me beg every year. How many mothers sitting here are thanking you that You didn’t kill their child this year? I want to take life for granted.”

It’s not that it’s all one way or one way at one time then the other, it’s both simotaniously. The trick is to join the rest of the world and only let them see the positive or only a glimpse of the negative. We don’t want to be labeled a depressed or unstable. I wish people could realize that these are real, hard, traumatic events and sights that we have to deal with and God has given us real and healthy emotions to deal with them. For me, Mother’s day is hard even if it does happen to be the special occasion of Justice’s birthday every so often. I believe being a little depressed on Mother’s day is a natural thing given the circumstances. What would not be natural is if I went through all of this and it didn’t affect me or if I stayed in a deep depression over a long period of time.

If you do feel like the events of your life are weighing you down longer than what you would like, please, talk to your doctor about your feeling. There are many ways they can help but sometimes, like in my case, it’s just my life. It’s my moment to be weak. I can’t be supermom all the time and neither can anyone else. However, I hope this brings a little understanding of our highs and lows.

There are support groups that help moms with almost everything in their normal lives from parenting to breastfeeding. Yet, when it comes to witnessing their child’s skull, stomach, back or chest being cut open, there is basically nothing to prepare them for what they will see or the feelings they will encounter. I hope that someday this will change for parents. I believe it will also improve the relationship and communication between parents and health care providers.

I would love to hear your comments and ideas about this post. Do you have any support groups in your area? What ideas do you have? Have you ever supported a friend through a rough event, it doesn't have to be raising a child with special need. I just would like to hear how other can relate.

This Time With Real Words, Please

2010-05-04T18:41:00.000-05:00

We go to school, spend all this time learning to spell only to grow up and have to start over learning a bunch of acronyms, by teachers nonetheless. This I found very ironic about raising a child with special needs.

Justice was only about two months old when I once again realized what a great country we live in here in the USA. I haven’t traveled outside of the United States much. I’m sure other countries are wonderful but I feel it would be shameful to take for granted the luxuries we are afforded here in America including all those we have condensed down to three and four letter phases.

"On Monday, we’ll gather your team and have an IFSP for Justice. Now it won’t be an IEP because she’s not old enough but at the IFSP, we’ll have the MDT do an assessment. The MDT will be the OT, PT, SLP, D/HH, EISC and an ELT. Now you do know that your child is entitled to a FAPE don’t you? Of course, you would. Feel free at anytime to get an IEE but you will have to pay for that yourself. Everyone there will be trying to ILCD, that’s why we’re here so don’t be nervous. I’m sure Justice will qualify under OHI if not for her DD, D/HH or MD. So really, an IEP or an IFSP and a MDT are nothing to fret about because JGB is bound to qualify ASAP and will be MMP even without an ESY. So Christy, before we get started what’s your family’s goals? What does your family need? Your laundry done? Oh no, sorry, nothing we can do about that."

IFSP (Individualized Family Service Plan for ages 0-3) and IEP (Individualized Education Plan for ages 3 +) can be overwhelming especially at first. Basically, what happens with babies is a referral is made to the public school system for the child to receive free services like OT (Occupational therapy), PT (Physical therapy), D/HH (Deaf/Hard of Hearing Education) or SLP (Speech Language Pathology). The referral can come from anyone, a doctor, nurse, parent or even a neighbor can call. The next step is for a service coordinator (SC) to contact the parents of the child and they only have a limited number of days by law to do this so things move pretty quickly after the referral is made. The SC then sets up a time to have a MDT (Multi-Disciplinary Team) assess your child and see what services if any they would qualify for. In our case, the MDT was done the same time as the IFSP, which just made for one long meeting. Next, therapists said what goals he or she had, how often they planned to come to our house and provide services and asked if I had anything to add.

There are some pros and cons to the meeting. In order to qualify, the therapist does have to tell you what’s “wrong” with your child. This can be hard to hear over and over again as 12 or so people in the room seem to pick apart your baby. You do have to really remind yourself it’s not personal and they are just doing their job so in the end they will be able to help your child. The good thing is, by law, they have to tell you the positive things about your child. There were certain people at the meetings I could have just got up and hugged.

As time went on, I believe I became relatively good at IFSP/IEPs. In the beginning, I didn’t have any goals aside from “Can anyone figure out how I can get some of this laundry done?” but boy did have them later. I learned the law and the things Justice was entitled to ensure her education. I spread the word to other parents and tried to help educate them. I would show up for IFSP and IEP with a whole list of goals for every therapist and teacher Justice had. I did not make their jobs any easier. I was tough on them but hopefully they too understood it wasn’t personal. I did what I had to do so Justice would have a chance at life. Heaven knows her doctors have it just as hard if not harder. However, these teachers and therapist from her early years NEVER treated Justice as if she was any different from any other child. They knew my expectation was for her to have a normal life. I expected her to walk, talk, eat orally, read, write, do math, ride a bike, go to college and so on and they always reached for those same goals not matter how far away they seemed.

Today, JGB is well on her way at becoming a BYL with tons of BFFs all because her OT, PT, DE, SLP, SC and many many more didn’t say IDK but said we’ll try, ASAP!

Justice Logic

2010-05-02T08:43:00.000-05:00

When pre-heating the oven, always check to see if there's cupcakes in there first.

Hero

2010-04-23T15:29:00.000-05:00

Merriam-Webster’s definition is “one that shows great courage.” Urban Dictionary says “Someone who helps without anything expected in return. Their gesture may be big or small, profound or not, it doesn't make im' any less of a hero.”

I’ve met many of these heroes since Justice has been born. I’ve already told you the story about the actual surgery but now I’d like to tell you about a special nurse that was there through it all.

The day started out pretty routine. We showed up, went into the big room, and started talking to the family next to us, visited with the doctors, etc., really not paying much attention to the nurse that was getting Justice ready for surgery. We did talk to her and answer her questions but beyond that, she was just going to be our nurse for a few hours, no one we really felt a need to deeply bond with. Like most families, we didn’t give her much thought, she was just writing down some medical history and starting an IV. Little did I know SHE would change the way I feel about pre/post op. nurses forever.

I wish I could give you her name because she now means so much to me I want her to have every ounce of credit due to her but for privacy reason, I’ll just call her the nurse.

When Justice came out of heart surgery, we expected her to look worse than when she went in but we didn’t expect her to be as swollen and pasty white as she had turned. Not knowing if this was normal, we tried to stay calm and not say very much but we were very worried. Her stats were also much worse and although she vomited on a regular basis, as she woke up, she started projectile vomiting bile up to 5 ft. This was very alarming coming out of a 5 lb. baby.

Suddenly, the nurse that had been taking care of a number of patients was focusing all her attention on our little one. Although she was staying very calm, we could tell she was not happy with the way Justice was progressing and was less and less comfortable with the situation as the deadline for her shift was coming to an end. Although she still had a couple of hours, we could tell Justice was not going to be ready to go home in that amount of time, much less make a 3 hours car ride to get home. Therefore, the nurse call the cardiologist back down to the post op room.

The cardiologist told her there was nothing for him to do. Justice had gone through the surgery fine and the other problems were now GI problems. From his viewpoint, Justice was to be discharged. Again, the nurse stood up for Justice and called her GI doctor who told her there was nothing he could do. Justice vomits, that’s that. Send her home.

It’s hard to explain how bad the situation was. If I’d known then what I know now, I would not have let the nurse do so much of the talking by herself. I would have said more. At the time, I felt extremely scared to take her home, for she looked like she was about to die but I had 2 very educated doctors telling me and not so nicely telling a nurse that Justice was fine and she was going to go home, like it or not. I should have at least taken her to the hospital boarding house over night. I think we would have felt a lot better knowing she was closer to the hospital but the thought never crossed our minds at the time. I think we were too busy worried about her condition.

However, this nurse really went to bat for us. I know she made a lot more phone calls then just calling the two doctors. It’s not easy for a nurse to go up against the “experts” who are considered the ones who know best. Nevertheless, she was there. She was in the room and she was the one that was going to have to tell us to take Justice home when she didn’t feel Justice was stable.

When I see her now, we still stop each other and say hi. We did bond that day. She could have lost her job for being so vocal or her license if anything had happened to Justice later. She also understood the pressure the doctors put Levi and I under by asking us to take Justice home in that condition. I don’t know if the doctor’s had another reason for demanding Justice not be admitted to the hospital overnight. Maybe insurance wouldn’t allow it, maybe they really felt she was fine, I don’t know but I do know for whatever reason, a little baby was sent home without a nurse or the parents understanding that she was safe or how to care for her if things changed.

I don’t have all the answered for healthcare but I am a believer that the first change should be communication. After that, we might try leaving our egos at the door. This wonderful nurse didn’t have an ego, what she had was a warm caring heart combined with an advocating spirit of a mother. She is a hero.

Current Justice 4/14/10

2010-04-14T13:00:00.000-05:00

I just wanted to leave a quick update this week. Justice is currently fighting a mysterious infection and it's causing her digestive system to shut down. This has been a common problem, a side effect of dis-motility I guess, but nonetheless, it's demanding a lot of attention and amazing fortitude on her part. Unfortunately, I will not be continuing the story this week. Please feel free to catch up on any missed entries or maybe reread an old favorite.

Thanks for your understanding,
Christy

Current Justice: April 8 2010

2010-04-08T08:13:00.000-05:00

I hope everyone is enjoying reading our story of how our precious Justice came into our lives but I thought you would also want to know what is happening currently with her. It would be really hard to explain everything right now but here are a few things that have happened in the last few months.

In Sept. she had brain surgery to correct a Chiari I (almost a II) malformation. At that time the doctor suspected she had a tethered spinal cord. In Nov. she was sedated for a MRI which confirmed the tethered cord. Then in Dec. she had spinal cord surgery to untether the spinal cord and at the same time they moved her G-Button (feeding tube) to a new position because it was leaking really bad.

They were planning to put spinal rods in her back to correct her scoliosis as soon as she recovered from these surgeries but has since put that surgery on hold. It's just to much for her to deal with right now. She also needs to get head gear to correct her teeth but that was put on hold for awhile due to needing good MRI's. Head gear is metal and will effect the outcome of the test.

We currently just got Justice a new (new) backbrace for her scoliosis. She got one in Jan. but it didn't fit right so she just received her second new backbrace since her last surgeries and is slowly getting used to being back in one. It's a process and takes a lot of patience and Tylonal but we're making it.

We go next week to re-look at starting head gear. Not sure if this is the best thing considering all she's been through but her teeth say it's time.

The last major thing we're considering in the near future, that I'm aware of anyhow, is a new growth hormone therapy. She currently takes a shot everynight but we're looking at adding a new type that would mean 3 shots a day. I guess we'll just have to see.

Other than that, we still have our check-ups. Neuo-surgery is at the end of the month so I'll up-date if he has anything new to say but that's the really about it. She did hit the back of her head last week where she had brain surgery in Sept. and scared me half to death. The worst part was she didn't tell me what actually happened until the next day while we were in a doctor's office, the little stinker. She was fine but I'm sure her Neurosurgeon will be interested in the story.

Thanks for stopping by and reading my blog. Hope everything is well in all your lives.

Christy & Justice

Hospital or Horror Film Set?

2010-04-05T17:52:00.000-05:00

“Oh, don’t go in there. Go back. Go back. Are you nuts? The only thing you’re missing is the scary music”….That’s what I would have told myself if I were watching a film of the day Justice had her first heart surgeries. It was my fourth anniversary and I could think of a million ways to celebrate but in a horror film, that was not one of them.

The original diagnoses for Justice’s heart defects were aortic stenosis, bicuspid aortic valve and congenital heart disease. This meant, her aortic valve was tight and instead of three little flaps that closed it shut, it only had two. We later found out that the aortic side of her heart was actually the better side and true to Noonan Syndrome, we added pulmonary stenosis and a dysplastic pulmonary valve. Again, this is where the valve is too tight and on her pulmonary side all the flaps were thick and deformed so; they didn’t seal or open very well. It was decided that they would do nothing with the aortic side of the heart but would do a heart catheterization and balloon the pulmonary valve to open it up so blood could flow through it easier.

We arrived at the hospital bright and early that morning. After checking in at the front desk, we were taken back to the pre/post op area. This was a large room with about 10 or so beds in it. Here they started Justice’s IV, took her medical history and things of that nature. In between prepping Justice for surgery her doctors would come and talk to us and answer any questions we might want to ask.

In the new hospital, they no longer have this community style pre/post op room. You go to your own little private room. Private rooms are good improvements; however, you did meet more people the old way. This day we were in a bed next to a 12-year-old girl who had broken her neck jumping on a trampoline. Maybe it was me being so incredibly nervous as it was but her story and the pain and worry in her parents eyes has stuck with me ever since. I have on occasion let me children jump on a trampoline but I can’t help but be taken back to the day we had to sit beside this little girl. One day the subject came up with Justice’s neurologist and I was relieved to hear him say that he cringes also when he sees a trampoline. Of course, his kids still talk him into it too.

From the pre/post op room you were taken up to another floor to the “Cath Lab.” As if I wasn’t nervous enough with this being Justice’s first surgeries and being seating next to a little girl with a broken neck, everything about going to the “Cath Lab” said take your baby and run! No Hollywood set could have been this scary. See the rest of the hospital was colorful and kid friendly. Just getting to the Cath Lab made you feel like you were in an “Authorized Personnel Only” zone. Everything was white, sterile looking and behind heavy metal doors. Our nurse led us down long hallways to a little waiting room who knows where. We were the only ones in there. Just us, some chairs, magazines and an old phone that wouldn’t let us dial out. This was before smart phones or Wi-Fi but with as deep as we were into that hospital, it probably wasn’t going to work anyways.

Every ½ hour to an hour, the nurse would call the old phone or come out to tell us how Justice was doing. This service is priceless. Now the hospital does it for about every surgery or at least they have done it for all of Justice’s major surgeries since the new hospital has opened but 10 years ago Cardiology, as far as I could see, was special in this way. Knowing your child is doing all right or even knowing that something has come up and the surgery will be taking longer than expected helps calm a parent’s imagination.

After Justice came out of surgery, the doctor came out to tell us she was doing fine and was in recovery. He then surprised me by asking me if I wanted the balloon he used to blow up Justice’s heart. Then he pulls out this surprisingly big tube with a deflated balloon at the end of it. In my wildest dreams, this was NEVER a decision I thought I would have to make. I had no idea what I was supposed to say. On one hand, it was kind of creepy to me. If I took it, that would mean I would have to touch it. On the other hand, if I don’t take it now, it will be gone forever and I might regret it later. I thought maybe I’m just in shock and all parents take things like this from the doctors. Why else would he be asking me? I ended up taking it. I figured I could always throw it away later if I didn’t want it.

Before we knew it, we were back in the pre/post op room. What happened next is a story that is still told by the nurses to this day. I know doctors do great things but many times, there’s a nurse laying her career on the line to insure those great things get carried out. Next post, I’ll tell you about an incredible nurse that showed amazing compassion for Justice.

Do you have something odd in a baby book? Been a little freaked out by a doctor’s office or question from a medical provider? Let me know, I’d love to hear from you.

Movin' Marine Corp Style...With Some Babies

2010-03-31T19:27:00.000-05:00

In between Justice’s first stay in a regular room at the hospital and her first surgery came the day for us to move. What a day it was. First off, we don’t just move, my family moves Marine Corp style. Everything was to be organized, packed, loaded, unloaded, cleaned and put away within 24 to 48 hours. My husband is an inactive Marine and as they say, once a Marine, always a Marine. Although I always come back and thank him for being so efficient, there are those moments where I think it’s going to kill me and this was one of them.

Levi had to work the day of the big move so the festivities couldn’t start until he got off work and drove the 60 miles back to the first house. Then, the move was on. I never dreamed I could multi-task so well. I had my 2 ½ year old busy and out of the way, boxes in one hand, a baby in the other with an apnea monitor and feeding pump strapped to my back. I had burp rags on every shoulder and treats in every pocket, just in case Cy got distracted and I had to bribe him. Bad parenting, maybe but I didn’t have time to consult an expert.

When we got to the new house, two things surprised me. First, the condition the house was left in and the second was how many kids came over to help us move in. These two things became the double edge sword of moving for me that day.

The condition of the house makes me laugh now that I’ve had 10 years to accept it. See, the people who owned the house before us weren’t out of it as of the afternoon we were to move in. My husband had stopped by to do a walk through on his way out of town that early afternoon and they were still there! They said they would be out soon and would do some more cleaning before they left. Levi told them not to worry about the cleaning; it didn’t look that bad at the time. However, by that evening when we got there it was trashed. They had taken light switch and outlet covers, showerheads, etc. You name it and it was gone. Except the bugs, they left us tons of bugs. There was no way Cy or Justice, who had just come off a respirator a month earlier, could live in this house. The exterminator was called ASAP and along with all the other things that I would have had to do with Justice’s care and the care of a 2 ½ year old, I was now shopping for outlet covers, showerheads, ceiling fans and deep cleaning. But the worst part was we were buying the house from a nurse. This day I completely understood the saying, never judge a book by its cover.

The part about moving that day that surprised me in a good way was all the kids who came over to greet us. They seemed to come from everywhere and were VERY comfortable around the place. I’m not sure how much time they had spent over at our house before it was ours but they seemed to be staking their claim to it that day. They were on the truck, in the house, in the basement, backyard, just plain everywhere. At first, I was a little worried because they were quite a few years older than my children were but that soon passed and over the years, I felt very close to them.

One neighbor girl became a respite provider for Justice when she became old enough. Another girl became like a sister to Justice and Cy. She came over every day. She would carry Justice all over the place and would never shy away when I was doing any kind of treatment to her; she always had to be right there beside her. She would fight with Cy and storm out of the room taking Justice with her only to return a few minutes later to start playing again. She showed Justice how to be normal. If Cy or Justice did something she didn’t like, she called them out on it just as she would any of her friends. She reminded us of what “normal” is supposed to be like. It’s so easy to forget when your child undergoes so much suffering to overlook bad behavior. You tend to forget what age appropriate is when you have nothing to compare it too. This little girl gave us all this and then some. She is so special to me. Now that she’s becoming a young woman, I couldn’t be happier of the person she was or is turning into. She is a beautiful person inside and out. She played such a big part in Justice’s first few years, I’m sure she will be mentioned in more stories.

Moving that day took great courage and tons of physical strength. We were moving to a new town where I had no family or friends to fall back on when the going got tough. My whole world was changing so quickly and it seemed as if so many things were going wrong but I when I look back now, I see the gold being purified in the fire. This move turned out to be the absolute best move our family could have made. We ended up with great neighbors, a wonderful school system (although there were some bumpy moments and I gave them a run for their money) and adequate medical care. It was never easy during this time but it became our home.

The Chicken or the Egg

2010-03-29T01:50:00.000-05:00

Justice’s second stay in the hospital was a regrouping of sorts. We knew by this time that things were not going to go away on their own and I desperately needed some help figuring out how to care for this child.

When we had left the NICU, we had actually only seen a gastroenterologist a handful of times. He had explained to us that when a baby is forming their intestines are too large so they are on the outside of their body. When the baby is big enough, they turn, I want to say 180 degrees but I could be wrong on that number for it’s been a long time, and come into the baby’s body. That’s how we get our large and small intestines in the position they are in. Justice’s, however, did not turn. They came straight in so she has what is called a Non-rotation of the large and small bowel. The problem with this is there is only one major artery that supplies blood to your bowels and in this position it could easily get kinked off and, at best, she would lose her bowels but most likely, she would die.

The other problems we had dealing with gastroenterology or GI for short were her constant vomiting and extremely slow moving digestive track. It was taking us hours to get an ounce of formula down only to have her vomit up the last 4 hours of work. She was not growing at all. She was slowly starving to death because her body was rejecting the food. The formulas we were using were so scientifically developed her body didn’t even have to digest them. That was already done, she just had to absorb it and we couldn’t even accomplish that.

GI was also concerned with her feeding tube. In the beginning tube feeding was supposed to be a short-term fix until we could get her to eat orally. It was very clear by now that oral feeding was not our biggest concern or at least it had been forced off the top concerned list whether I liked it or not. As hard as it was emotionally to except that Justice was going to be tube fed long term, that was reality and it was not in her best interest to have a tube stuck up her nose, down her throat and into her stomach long term. It was time for a more permanent solution. She needed a G-Button. I plan to blog more on the emotional trials of tube feeding your child in the future.

The last thing I was concerned about, GI wasn’t so much but the surgeon ended up agreeing with me, was due to her Non-rotation her appendix was on the wrong side of her body. This concerned me because I felt, should she have a problem, would the local doctors know what symptoms to look for?

These were the problems they found on the Upper GI that dreadful night in the NICU. This is what they thought they needed to do emergency surgery on but called it off the next morning. Now at this hospitalization it was apparent that we were not going to be able to put it off much longer. Justice was not growing. Her vomiting was at dangerous levels of starvation and dehydration and she was vomiting bile up daily now. The problem was her heart had changed and would most likely not withstand undergoing these four massive surgeries in a 5-pound baby who has extremely poor nutrition. Who would go first Cardiology or GI done by PediSugery?

We spent this stay in the hospital really trying to figure out which came first the chicken or the egg. Cardiology said they needed Justice bigger to undergo the heart surgery safely. Plain and simple, they needed her to gain weight. GI/PediSugery insisted there was no way for her to gain weight without a Fundoplication (for the vomiting), G-button (feeding tube), and Ladd’s Procedure (for the Non-rotation). They would also take out her appendix at the same time. Again, Cardiology said “NO but make her bigger so we can do our surgery.” In the end, Cardiology just could not give the OK for the GI surgeries so Cardiology would go first. We would have to go home for a few more weeks to try to gain ANY weight but we were soon heading back to our second home for the first of many surgeries.

Thumbs up or Down????

2010-03-28T22:47:00.000-05:00

So what do you think of the new look? If you like my blog, feel free to tell your friends about it. I love seeing new places on the map and hearing from everyone. New post coming out tomorrow! Can't wait to hear what you think. As of tonight, I better get to my full time job and get Justice's tube feeding started and give her a shot of growth hormone.

Not Quite The Hilton But It Will Do

2010-03-24T09:54:00.000-05:00

About a month after Justice came home from the hospital, she had to return. Stabilizing Justice’s feeding was turning out to be much harder than anyone expected it to be. The original plan was to have her eating orally before we left the NICU but it had become clear that it could take weeks or months. Years, on the other hand, never entered anyone’s minds. Nonetheless, we had to return and it was quite different from the NICU.

It was still the old hospital at that time so all the rooms were double rooms. You had a bed, hospital equipment, a small closet, a TV and a chair that transformed into a very small bed on each side of the room with a curtain separating you. The chair was actually kind of cool if you knew how to work it. The bad thing was, you had either to be a frequent flyer at the hospital or get lucky and your nurse remembered to tell you the chair transformed. Overall, the rooms weren’t bad if you didn’t have a roommate. Otherwise, they were a little crowded.

The hospital was very understanding with their frequent flyer families. In countless stays in the old hospital, we were only assigned a roommate one time and that was on a day we were being discharged. This I felt was kind and understanding of them on so many levels. Most people never think about it, however, if a healthy child in the family needs to go into the hospital, many times, the whole family shows up with presents, balloons, cards, etc. They can end up making a huge production over getting tonsils out while in the bed next to them is a child that has spent most of their life there. The cards and balloons have long stopped coming and they might be have something very serious done like brain or heart surgery. The other family is not doing anything wrong by bringing presents to their child; it’s just hard for the second family to see again and again. It was very nice of the hospital to think of this and not assign roommates to the frequent flyer families unless they absolutely had too.

Aside from the room, another major change from the NICU was your nurse was no longer only a few feet away. You had to use a call light and they couldn’t see your child if they left the room. This just didn’t feel as safe as the NICU. I know it was safe. She was no longer in as critical condition as she had been but I can’t stress how hard of a change this is for parents. The only thing I can compare it to is sending your child for kindergarten for the first time. You know they’ll be alright but you’re still nervous.

One thing I do not miss about the old hospital is having to walk down the hall to use the public restroom. There was a sort of a unspoken law, once visiting hours were over, you could wear whatever you wanted to walk to the restroom, pj’s, slippers, your hair could be a mess with make-up running down your face, there was no judging after this time of the night. You were free to use the restroom, get a cup of coffee or the worst thing of all, use the shower.

Let me try to describe the shower situation for you. First off, the baby and toddler rooms were on the sixth floor of the hospital and down the hall from the shower room. You had to pack up everything you needed to take a shower, including the one thing you were bound to forget at some point, a towel. Once you were there, assuming it was open when you got there, you got the joy of taking a bi-polar shower. This shower could give you 3rd degree burns and frost bite at the same time, without warning. More than once, I thought someone was going to busting in due to me screaming. Six floors of people flushing toilets, turning on sinks and patient room showers on you. It astounded you and they did not even have a mirror so you could see the damage. You just had to pack up you things, put clothes over your wounds and painfully walk back to your room. However, if their goal was to get your mind off your child for a few minutes, they certainly had a sure way of doing it. Nothing will make you take some “me time” like needing some medical attention yourself.

Lastly, and I can’t completely blame the hospital for this but they do hamper my recovery, is my total addiction to coffee. There are only so many things to do while you’re in a hospital with your child. You can color, watch cartoons, go look at overpriced things in the gift shop you have no intend of buying until they think you’re a shoplifter or you can walk out of your room to go get yet another cup of coffee. It’s bad coffee but it’s free and it's something to do. One always thinks, maybe I’ll get lucky and get to make the pot. This gives you another thing to do and you know the coffee will be fresh. It’s a win win situation. Before you know it you’ve drank two pots that day. Not that this is all bad, it does help wake you up when the students and residents start rounding at 4:30 a.m. Plus, you do get some exercise walking out to the coffee pot. However, I always feel a little like an addict when I get home and our visitor’s drink 1 or 2 cups and I’ve just downed a pot and a half and am starting to shake because I just shared the last of the pot with my guests. Maybe someday when Justice moves out I'll start a rehab program for hospital coffee addicts. But that's another blog.

If Only For a Moment

2010-03-21T21:52:00.000-05:00

People come and go through our lives every day. Some are very important to us like our family and friends while others we do not even notice as we pass them on the street. Some people however, step into our lives for a specific reason, for a specific time, then step out again. These people teach us things. They share a moment with us. These people may not even know how important they were to us. This post is about one of these people.

Have you ever spoken to a person from another English speaking country and used a word that does not quite translate? Sometimes that is the way it is when a doctor and a mother try to speak. It is not that they are not speaking somewhat of the same language; it is just some words mean different things to each person. Let us take the word “un-diagnosised” for example. To the doctors it meant, they have not decided on a diagnoses yet. They know it is something. They are waiting on test results. They will label it. At worst, it will be labeled “we don’t know” or “it doesn’t have a name so now we get to pick the name ourselves.” To me, however, it meant “nothing.” She has nothing. She is fine. She will soon be healthy and we can move on. Unfortunately, neither the doctors nor I caught this mistranslation until I got the news of the official diagnosis.

My husband had to work and Justice needed to see the geneticist soon after coming home from the hospital. They had run a bunch of tests while we were in hospital and now the results were back. When I arrived, I was surprised to see a new doctor was seeing us that day. I was a little disappointed in this since you tend to want to stay with the doctors you know. I had met so many by now, I did not really want any more. Nevertheless, this doctor seemed nice enough. We went over Justice’s medical history again and he looked her over from head to toe. As he did this, I do not think he realized it, or maybe it is just his job, but he was describing every inch of her as a deformity. He started with her curly hair then her ears, eyes, nose, lips, chin, neck, chest, arms, elbows, hips, knees, feet and even her toenails. My heart sank. I felt like I was being stoned to death. I just wanted to rip my baby out of his arms and run away. I couldn't believe he didn't see how beautiful she was. I just didn't understand why he didn't have anything nice to say but he was busy. He got used to these terms, this language, and probably just forgot it was new to me.

We finished the appointment with him finally telling me she has Noonan Syndrome. The tests had come back and said it is not Turner Syndrome. There it was the one I did not want her to have because I hated that name.

This is the only time in my life I really do not remember a span of time. I remember being in the doctor’s office and the next thing I remember is pulling into the post office a block from my house, 60 miles later.

This is where that special someone held me up. If someone would have told me when I was 13 my 7th grade math teacher was going to be so special to me I would have died laughing. I knew she was always a very nice person and had lost a grandchild with Down’s syndrome but I was busy with being caught up in myself at age 13. Now here she was, one of the only other people in town who could imagine what I was going through and she was working alone at the Post Office that day. She was the last person on my mind but she was the person I needed the most at that moment. I do not remember it very well but I do remember she was so kind and loving. She did not make me feel judged or like I had done anything to inflict this on Justice. She made me feel like she understood my pain and that Justice was a beautiful baby.

I thank her so much for that day. In one of the worst moments of my life, she brought light. I do not just look on this day with sadness. I look at it with thankfulness and joy because my 7th grade math teacher walked back into my life, if only for a moment.

So Much Work

2010-03-17T20:26:00.000-05:00

Our first month home was incredibly exhausting. We were in the process of selling the house we lived in so there was lots of packing and cleaning to do. We were also buying a larger house about 60 miles away. This demanded papers to be signed, furniture to be picked out and a lot of driving back and forth. Then there was catching up for lost time with our son and Justice’s medical care that was now totally our responsibility.

The thing about hospitals is, they run 24 hours a day and the staff rotates caring for you. If you need medicine, they call down to the pharmacy. The pharmacy ships it up to your room and the dose is started pretty much as soon as it arrives. If your doctor decides to start another med a couple hours later, it too is ordered, shipped and started with little thought to the schedule. They are most concerned with whether the meds conflict with each other rather the frequency of attention one would have to devote to this kind of schedule.

Justice's schedule leaving the hospital was also based on 24 hour a day care by multiple people. The problem was, my husband and I were the only “people” and he had to go to work. She had many meds to take, most 2 -3 times a day, all scheduled for different times. This meant I was giving medicine usually 12 or more different times in 24 hours, each medicine needing shaken and measured out each time. We were also trying to teach her how to eat orally for she did not know how to suck or swallow. We would try for 30 minutes every 2 hours, of her waking hours. After failing an oral feeding session, we would tube feed her for 1 hour. The tube feeding happened every 2 hours 24 hours a day. In-between tube feedings I would wash and sterilize the feeding tube, supplies, and wash her clothes and bedding due to her vomiting. Then there were doctor’s appointments to go to, supplies to order, and visitors to attend too.

I was amazed how “on my own” I was once we left the hospital. There, when I asked a question, I usually got an answer even if sometimes it was a bunch of fluff. They at least knew most of it and my child, in no way, seemed like a new case to them. They always made me feel like they where my teachers, my leaders and the one I would turn to for answers. Outside the hospital, that was a different story.

I viewed our first home health nurse as a God send. I was so excited for her to come. I had everything ready. Cy and Justice had bathes. The house was clean. I think I even did my hair that day. I felt that help was finally arriving. Someone I could talk to, who spoke in my new language. It was going to be like Christmas.

When she finally arrived, we went over Justice’s medical history, which for her being about a month old was rather lengthy. She weighed Justice and took her vital signs. I did notice she seemed a little uneasy but I thought, maybe she was having a bad day. I tried my best to befriend her. I wanted her to love my child so. Nevertheless, in the end she told me she would be back next week. This was very disappointing to me. However, what could I do? Someone stopping by to help sometime was better than never at all.

The next week she came back with another nurse. They again took Justice’s vitals and then told me they were not going to be returning. They did not feel comfortable with her or doing her care. They said I knew more about her and I had everything under control. They had never worked with a child this bad before and I was handling it better than they would.

My only regret is I did not say anything about the situation at the time. I just kept on stepping up to the plate and taking care of things. I was too young to know when I should complain. I was exhausted! They should have seen that and if they could not, they should, as professional health care providers, assumed no person was capable of safely caring for anyone under these circumstances. At the very least they should have looked at her meds and feeding schedule and seen what could have been combine so I wasn’t getting up every 15-20 min. to administer care. They should have seen a young mother and asked her what her needs were and if she did not know help her figure it out. I regret how I handled the situation because it did not help anyone else. I was able to continue but I can see how someone might not be. Even I, who they said was doing great, had lost 50 lbs. of pregnancy weight in 2 months. I am very thankful for my strength but mostly for my wonderful husband and the family and friends who helped with everything from Cy to mowing our lawn. I know without this, I could not have been as strong as I was. I would have truly needed these nurses. I wish all support staff, whether it be a doctor, nurse, social worker, clergy, etc…, recognize how important they are. It is not always about the actually job they are being paid to do, sometimes, it is just knowing they are there.

Going Home

2010-03-14T20:09:00.000-05:00

Before we were allowed to take Justice home, they did what was called, “The car seat test.” I’d been watching other babies go through it and all seemed to be passing so I wasn’t worried much about it. I mean this was nothing compared to what we had just been through. All they had to do was hook up a few monitors to Justice and have her sit in her car seat for about an hour. Easy enough, right? Wrong. Of course, Justice failed the car seat test. She couldn’t breathe in the car seat so they called off the test early.

Lucky for us, they had what they called the car bed. This was a tiny rectangular bowl looking thing with incredibly strong thick Velcro to hold the baby in while it lay down. This would have worked out very well if it weren’t for two things. First, you pretty much had to stand in the bed and pull with all your might, back pressed up against the top of the car, to get the seat belt tight around it. This was tricky enough but when you add in the apnea monitor, feeding pump, diaper bag, medical supplies, newborn baby and 2 ½ year old son, it was a little much to do every time you got in the car. Second, Justice threw up all the time. I mean, all the time, she averaged around 20 times a day. In the car bed, she could be laid somewhat on her side but more than likely, she would wiggle back onto her back. Factor in gravity and this became a very dangerous situation for her. There were times when I couldn’t pull over very fast and I thought for sure I would lose her. It didn’t take long for me to take the car bed back to the hospital and demand we figure out a way to make her be able to breathe in a regular car seat.

You don’t realize until you leave the NICU how much you’ve begun to depend on the monitors and staff. While you’re there, you start to feel some what confident in your abilities and forget that you aren’t actually doing it on your own. I was no longer thinking about the child going home with the trach. If that was my child, I would have acted as confident as her parents as long as we could have gone home. It’s like a toddler confidently walking as they hold onto their mother’s finger. They begin to have no worries; they just go where they want. However, as soon as you walk out the hospital door and put your baby in the car, it's clear, you’re on your own. You realize no one is holding your hand.

All my confidents vanished. I started thinking to myself. "She was not ready to go home. What was I thinking? What were her doctors thinking? Why did they send her with ME? Didn’t they know I was bluffing this whole time? I’m not really capable of taking care of her. Oh my God, she’s going to die and it’s going to be my fault! And she pooped! She pooped and I have to change her and it’s 100 degrees out. I’m going to have to take her into that gas station to change her. I’m going to have to tell the doctors I didn’t even get her home because she pooped and I took her into a filthy dirty gas station! Oh, why couldn’t she have just held it until we got home?"

Happily, she did survive the car ride home and so did I. Come to find out, changing a diaper is changing a diaper whether it's your healthy child, you're in the NICU with nurses to watch your every move or in a gas station on the side of the road. So the story will continue.......

What to Tell

2010-03-10T18:20:00.000-06:00

As I’m writing these stories down, I’m finding it very hard to tell the whole story in such a short amount of time. Every day in the NICU could be a chapter in a book. Do I tell about the tall doctor that walked in and without saying a word to me ordered some strange sounding medicine and cured Justice of her low calcium levels. How do I express how in awe I was of him and how over the next 11 years he would become one of my most trusted advocates? However, the first time we met, he didn’t even see me sitting there.

Do I tell you how they thought Justice was born with Leukemia? I didn’t even know babies could be born with Leukemia. I even asked if that would mean I also had it. How could she have it and not me? We decided not to do a bone marrow test because we felt it was to invasive and she had other problems to deal with at the time. Two years later, while I was co-instructing a course at the university, we had a guest speaker who talked about babies born with Leukemia only have a 2% survival rate. At least that was what it was at the time. This was incredibly hard to stomach. No one told me this before. Here I was in front of a classroom full of students, cameras feeding it to other cities and it’s suddenly clear to me, if we decide to test Justice and it comes back positive, there’s really nothing they could do to save her. I know the doctors were trying to save me the heartache when they couldn’t get an accurate test result but hearing later in this way didn’t help me. Again, it was one of those times; you hold your chin up, keep it together until you can be alone and then cry until you run out of tears. So far, Justice has not developed Leukemia but to this day, I hold my breath when she has blood drawn.

Do you want to hear about the Genetics’ intern that instead to taking a skin sample from a spot that would never be seen decided to take a short cut and scared the top of her thigh. I’ve never seen him again but I ended up speaking to the doctor who assured me he spoke to the intern and it would never happen to another child. I know he probably didn’t mean any malice but he didn’t think about what his actions were doing either. Every time I see this scare, I hear the doctors telling me my child isn’t normal. The little devil on my shoulder tells me they had to run this test because she’s "deformed," "mal-formed," "had an abnormal development". (All medical terms used to describe her to me.) I know she’s better than normal. I know she’s perfect but this test meant something else. As much as I accept who she is today, they didn't test her DNA because things were going so perfect and they wanted to see why. As a doctor, he needed to be aware of the long-term effects of his decisions. It was more to us then a random DNA test, it was personal.

Maybe you want to hear about the happier moments, like how when Justice would come out of her drugged up stupor we would immediately bombard her with camera flashes. She slept so much of the time; her waking moments were just precious to us. The poor little girl probably felt she was born into a Vogue photo shoot. Or when Cy came to visit and we took him to see Pooh Bear. He was so excited. It was so wonderful to see him and hold my other baby. Just seeing his smile would brighten my day and mend my heart.

I could tell you about scary things, like how after visiting hours you had to enter and exit the hospital through the emergency room. This was fine except as soon as the sun went down the police started bringing in all the gang violence victims. This in turn brought the rest of the gang and their families to check on the victim. Then you had your rival gang, drunks who got in fights and think you’re hot, over dramatic teenagers who wrecked their parent’s car and the homeless guy who was probably just there for a show and a warm place to hang out. After visiting hours I myself wasn’t an innocent 25 year old from a small town. I was suddenly, “The Mom,” even the toughest gang members knew to step back when I walked to my car. It didn’t take much to sense my stress. None of them dared to find out how unstable and crazy a NICU mom might be.

However, one thing I will never forget about the NICU is the day I tried to fill out Justice’s baby book. My original thought was this would give me something to do. I could fill in bits and pieces of it but for the most part, it didn’t fit. Where was the part about tube feeding? Where could I list her 18 or so doctors? What about the day she started breathing on her own? I had to tell about that. I ended up calling the March of Dimes and asking them if they knew of any baby books for the NICU. I thought they could easily tell me where to look but they didn’t know of any either. They said they had never thought about it before but I had a very good idea and they were in the process of putting out a welcome packet for NICUs around the United States and wondered if I would write a baby book for them to add to it. Therefore, when Justice was a few months old I wrote the March of Dimes’ NICU baby book. This will always be something I am very proud of. I have always prayed for it to bring a little bit of normal into the NICU, yet, still fit our special babies.

There is so much more to write about the NICU but from this point on, we should be about ready to go home. If for some reason, I remember something from our days in the NICU I may come back to this time but for now, I think I will start moving forward.

Slowly Getting Better

2010-03-10T07:43:00.000-06:00

My NICU Angel Girl

2010-03-07T16:31:00.000-06:00

I would like to take one post and tell you about my other baby girl in the NICU. I don’t know her name or even the actual day of her birth but she is my child all the same.

One morning, about a week after Justice got to the NICU, I arrived at my normal time to spend the day with Justice. There in the bed on the other side of me the tiniest little girl I had ever seen. Now, most of the babies in the NICU were preemies which made Justice look pretty big at 5 lbs. 10 oz. but this little cutie was beyond little.

Since she was just on the other side of where I sat, it was hard for me not to see her or over hear what the doctors and nurses said about her. She was just as close to me as Justice was.

Like I said, I don’t remember her name, she may not have even been given a name but I do remember she was born at 24 weeks or 16 weeks early. 10 years ago, this was the cut off week between a miscarriage and a premature birth. The mother was 16 years old and said she didn’t know she was pregnant and by all outward signs, didn’t care either. She spent her days eating and watching movies at the house where we stayed with her mother and boyfriend while I sat beside her baby girl and prayed. I’m sure it affected her but you couldn’t tell at the time.

This beautiful precious baby was born in a toilet. When I think about that my heartbreaks. Nothing was easy or even without tremendous pain for this tiny baby. At the hospital, she was kept in a table like bed with a heat lamp on top. She had plastic wrap wrapped around the bed and a blue neon light shining out from under it. The bed shook really fast to keep her lungs open while oxygen was pumped into them. It was painful to see a baby in this condition but her fight was amazing. Here she was, born in a toilet way to early and she’s still here. If she could even make it one day, then I must keep fighting.

One day her little hand broke out from under her plastic wrapping. I stared with amazement at the size of it. It couldn’t have been much bigger than a nickel. The littlest fingers all spread apart reaching as high up as they possibly could. I called for the nurse who in a flash was tucking her back in and medicating her to keep her still. Then what probably shocked me most of all, the nurse gave me a lecture on privacy and how I wasn’t supposed to be looking at her. What did they expect? The beds shaking, the neon lights flashing, bells and alarms are going off and she’s not 3 feet from me! As I choked back tears from my scolding, I knew in my heart I did the right thing for her and that’s what mattered most of all.

My little angel was only with me about a week when her purpose on earth was fulfilled. One could say it wasn’t meant to be but I think it was. She wasn’t an accident. Her death wasn’t for the best, it just was what it was. She was meant to be, she was loved and needed and then she had to move on. I am so proud of her. In her few days here, she overcame great trials like being born in a toilet 16 weeks early. She taught at the highest level, for she was the teacher of great doctors and nurses. Like most great people, she goes on teaching and touching us even after her death. It doesn't matter what she gained while she was here or what family she was from, what mattered is she fulfilled her purpose. That she did, she did with grace and I thank her for allowing me to be part of her life.

She would be almost 11 years old if she had lived. I cannot help but think about what she would be like today if only she could have stayed with us. Would she like sports or would she be more into make-up and girly things? Would she have light hair like her mom or would her hair have been darker? I guess it wouldn’t really matter. Wherever she is right now, I know she’s perfect. I know she knows that she was important, wanted and loved. So tonight, when you say your prayers, please remember her. Her family may never even told a soul she lived but you and I know.

May you rest in peace my little angel.

6 a.m. Margarita

2010-03-03T10:50:00.000-06:00

The night before we were to go home, I called Levi and told him to drive up and get us; she’d be discharging in the morning. At that time, you had to leave the NICU 2 times a day, 7-8 a.m. and 7-8 p.m. This wasn’t a bad thing because it made you get up, stretch and get something to eat. This night, as I waited to go back inside I overhead a doctor and his nurse making all kinds of calls and talking to each other about Justice. I didn’t know what to do because they kept saying they’re waiting for “Mom.” If I went up and said I was “Mom” then I would be admitting I was listening to their conversation. On the other hand, they were in the hallway. I decided to wait and went in at my usual 8 p.m. time.

No sooner did I get to Justice then I was approached by the doctor and nurse from the hall. They tried to gently tell me that the Upper GI test we had been doing for 16 hours now was not showing good results. Her digestive system was hardly moving at all and her small and large intestine were not in the proper position. They drew me pictures and explained they were calling a surgeon back to the hospital tonight to look at the test and probably do surgery.

To say I was scared and my heart was broken was an understatement. Call it mother’s intuition but this was the first time I truly believed she was not going to make it. Every time the doctor would walk out the door, I would burst into tears then pull myself together to talk to a nurse or doctor only to burst into tears as soon as they walked away. My mind kept going back to her heart. I can’t tell you why. I certainly didn’t know much about the heart, especially at that time, but that was my concern, her heart couldn’t take it. Nevertheless, what’s a 25-year-old girl, who obviously isn’t taking this very well, with her red nose and puffy eyes supposed to say? I really wasn’t in a position to argue my intuition against their expert knowledge and advice. I was at their mercy and I was alone. Levi was on his way up but for the first few hours, it was just me. I felt I’d hit rock bottom. Every emotion from the past weeks was boiling out. All my staying strong, listening and learning when I wanted to run and hide, being away from Cy for the first time, babies dying around me, Mother’s Day, hormones, all of it was catching up to me. I had just had a baby damn it! When most women still have their moms around helping them, I was sitting here alone. Levi couldn't help me, he had to be at work at least some of the time and he was dealing with all of these things himself. I was doing the best I could but I needed someone to rescue me. Just throw me the smallest of a flotation device and I’d be fine but this night, I couldn’t do it.

The surgeon came in and basically repeated what the Gastroenterologist had said with the exception, he thought it could wait until morning to do the surgeries. They tried to assure me her heart would be fine but that didn’t do much to calm the nervous feeling I had about it.

To add insult to injury and looking back a little comic relief, as I sit there feeling as if my time with my daughter were quickly coming to an end and there was nothing I could do about it, the little boy not 3 feet from me got circumcised! That’s right, they did it right there next to me. Poor little thing, good thing I had my boy first because to this day I can still hear his screams. I look back not only with pride at my amazing self control, for my motherly instinct wanted to attack those predators but more so for the strength and determination of this tiny 4 lbs. baby who fought with all his might to save the original design of his God given manhood. I have to say we were both taken by surprise by the “procedure” that was carried out that dreadful evening but out of adversity comes strength and that little man had it.

The next morning, we arrived at the hospital early for Justice’s surgery was schedule first thing in the morning. She was prepped and about to head down stairs. The room was full of babies, nurses, doctors of all kinds, Levi and myself. Our Neonatologist was trying to assure me that everything was going to be all right but I believe she was having a little difficulty believing it herself. Finally, the surgeon comes in the room, sits down and says he doesn’t feel comfortable doing the surgery right now. He thinks we should wait, give it sometime. He couldn’t sleep, it just doesn’t seem right.

I couldn’t believe it! The other doctor’s couldn’t believe it! This surgeon never does things like this. We all stood there in disbelief. Finally, our Neonatologist turns to me and says, “You need to go get yourself a drink! Find some place that sale margaritas at 6 a.m. and go have a few.” And that about summed up how everyone was feeling. Everything had been going so fast, so many highs and lows, we all felt like we needed a 6 a.m. margarita.

Over the next 11 years, I got to know this surgeon a LOT better and I have never seen him do anything close to this ever again. We have pretty much bunted heads on every occasion since this day. I truly respect him as a surgeon and have trusted him to do most of Justice’s surgeries, we just don’t always see eye to eye on the recovery or feeding aspect of things.

A couple months after this, we went to see her cardiologist. They ran some routine tests on her heart and found it had changed dramatically. Her heart would not have been able to withstand such surgeries. Justice’s first surgeries, in fact, turned out to be a heart cath and pulmonary valveoplasty or ballooning of her pulmonary valve.

Looking back, it almost makes me laugh that the doctor that saved me that night, the night I felt I hit rock bottom would turn out to be the doctor that would push me to my limits, make me want to pull my hair out and yet, still be here 11 years later. However, that night, before any disagreements or miscommunication, that night, he listened to his instinct and me. I will always be grateful to him for that, he might not see it, but I truly am.

In My Arms

2010-03-01T10:56:00.000-06:00

Do you believe in the saying “Absents makes the heart grow fonder?” I don’t know if I ever did, however, by the time I got to hold Justice the second time I believed couldn’t have been fonder of my precious little daughter.

Justice was 5 days old when they took her off the respirator. At the time, it seemed like forever but I now know to count my blessings for such a short stent. This was one of the happiest days of my life. I was so excited the doctors thought she was strong enough to breathe on the own. It took a few tries and a lot of oxygen but she finally did it. Something got better! This alone seemed like more of a blessing than I deserved.

When my son, Cy, was born, I expected him to breathe and when he did, I didn’t ever think anymore about it. Sure, I was a new mom and would check on him often to make sure he was still breathing in his sleep but I didn’t seriously think he wouldn’t breathe. I never stopped to think how complicated the repertory system is or how much work it take us to just take a breath. With Justice, all of this was now aware to me. She was breathing on her own. What a heroic accomplishment. She was making it, she was living! I knew she would! I just knew it!

Still hooked up to IV’s, oxygen and all kinds of other tubes and wires they suddenly asked me if I wanted to hold her. “YES!” was my first thought and I could have broken her incubator to get her out. Then reality sets in and “Okay, do you think we should?” comes out of my mouth.

On one hand, we really wanted to hold and touch our baby we loved so much. On the other, we didn’t want to hurt her or set her back from the progress she had made in any way. But oh, when my daughter was wrapped up and put in my arms, just my arms, all the tubes, IV’s, doctors, alarms, syndromes, heart defects, everything, it all melted away. She was my baby. Whatever was going to happen, she was not going to be alone. A few days ago, we were two people in my body, we were one. But the changes that happened in her body that were causing her so much distress now occurred when we were one and I was not going to let her fight these battles on her own. Now, she was in my arms, now we were together as a mother and daughter should be and as I helped her grow inside me, I will help her grow in this world.

In the next few weeks, I became much more comfortable with my role as a mother of a medically fragile infant. The nurses were exceptionally great with teaching me how to care for her and how to recognize when things were a little too much for Justice. I learned to change her diaper, wrap her up in a blanket, feed her, put down an NG tube (feeding tube down the nose) and run all sorts of equipment. All of this has to be done differently with a medically fragile infant. Blankets have to be wrapped around wires and tubes, Justice had to be tube fed and would vomit repeatedly and even changing her diaper could make her heart rate drop to an unsafe level. However, with practice and patience, I would do more and more of Justice’s care and ever so slowly Justice improved enough to be promoted to the “Satellite NICU”

The “Satellite NICU,” was an overflow room, if I can call it that, for the babies who were doing better but not quite ready to go home. They really promoted it to the parents and said, “It’s your last stop before going home.” “It’s just for the feeders and the grower’s.” In reality, it sucked. It was a small room with furniture from what looked like the 1950’s and equipment that looked like it was invented for the polio scare. You had less room to sit then the regular NICU and only one, maybe two nurses for six or so babies. It probably wasn’t very bad but when you just came from the other room, it seemed like a demotion. By the time you got to the Satellite NICU, you were ready to go home. I felt I could do anything for Justice by this time or at least I would do anything for her so please, just let us go home.

One Thursday, they finally gave into my pleas, with a bunch of stipulations I had to agree to, and we were going to get to take our not so newborn home. We had all the training, the car bed (very interesting car seat like thing, I’ll post more on it at a later date) and one more test and we are out of here………We’ll how long should an Upper GI take? 3 or 4 hours at most? We’ve been doing this for 16 hours now, what does this mean? I don’t understand. But we’re going home. No, you said we could go home. No, you said we could go home. How long will this surgery take? So you’ll do a bunch of surgeries at one time? Can her heart take that? So how much longer do you think we will have to stay before we can take her home?

Languages

2010-02-25T10:54:00.000-06:00

If you ‘ve ever spent any length of time in a hospital, it soon is clear that it is a world in and of itself. There are places to shop, eat and maybe gardens to walk around. Along with this, there are different races, cultures, abilities, disabilities, age groups and languages that are spoken. To be precise, two major languages are spoken, Family and Medical. It became clear to me very quickly that if I were going to be of any help to Justice or at least not make things worse, I was going to have to learn this Medical language.

What I knew was Justice was very sick. Some of the doctors didn’t seem to be very optimistic about things although they were talking more neutral then negative since we arrived in the larger hospital. They figured she had a genetic syndrome of some sort, probably Turner’s Syndrome since she was a girl but were running tests to tell for sure.

They had mentioned Noonan Syndrome briefly and I remember thinking “I really hope she doesn’t have that Noonan Syndrome, I can’t imagine having to say that name to people. It sounds like something Mork says on Mork and Mindy. It’s bad enough people will make fun of her and assume she’s retarded but Ugh, I hate the sound of that name.” I know, very immature, but that was where I was at the time. I was sad, hurt, embarrassed, I felt I did something wrong during the pregnancy, I thought Levi would blame me and maybe leave me for ruining his child, I was tired and secretly getting angry at every mother I knew who’s baby was fine. Doesn’t sound like the hero mom full of grace that everyone pictures does it? It surprised me too. I didn’t know all that was in me. Where did it come from? I know now, it was just a process. I was shocked and grieving. It was normal. I was normal. It was something I had to go through, no different from when someone looses a loved one. Remember, for 9 months I pictured Justice the way I felt she should be. This healthy baby that would eat, drink and grow to look just like me and was now gone. Everything I knew was gone. My going back to work was gone. I just needed some time to adjust. I still loved her more than words can explain. I wanted her to live so bad I would find myself sitting beside her holding my breath in such deep concentration willing her to get better but I still was wounded myself. It would take years to start to heal and I’m not for sure if one ever fully recovers.

At this point, I was at a fork in the road, I could either, roll in my own self- pity or I could get up and learn what the hospital staff was talking about. Both of these options have their pros and cons. On occasion, I feel it’s my right to have a couple hours with the latter. However, I found a library with internet and started researching both Turner and Noonan Syndrome. This was before the internet really took off so it was quite an experience swimming through the research to find what I needed. Little by little however, I learned one word at a time.

Thanks for the Chance (The Justice Poem)

2010-02-18T12:41:00.000-06:00

This poem was written as a Christmas present for the NICU and the hospital staff in 1999 by my sister. It was later published in the hospital newsletter.

Thanks For The Chance (The Justice Poem)

I came into this world so weak and so small
The doctor’s first said. “She might not make it at all”
We’ll fly her away to the best of the best,
_______ Hospital they said “will take care of the rest”

My mom was so worried. Daddy tried not to cry
They named me Justice, then had to kiss me good-bye
By the time they arrived, I was already there
They could tell right away I was getting great care

My parents waited with anticipation
Trying hard not to show such high expectations
You tried everything you could, sometimes good, sometimes bad
Emotions ran high; happy, hopeful and sad

You all were so gentle and careful with me
It was the first sign of hope that my parents could see
When others gave up and had no hope to give
You wouldn’t stop. You knew I would live

Your care and compassion gave me a chance
To grow up and giggle, to laugh and to dance!
See I have a big brother. He runs and he plays
And you seem to want that for me for the rest of my days

I’ll always be different from others I know
But thanks to you I WILL get to grow
My entire family is eternally grateful to you
For being the best and knowing just what to do

Regardless of how life turns out for me,
I hope I will have the wisdom to see
That each of you in your own special way
Gave me the chance to live one more day!

From Justice Gia Bennett
With help from Aunt Brigett
12/22/99

Master of Ceremonies

2010-02-16T15:32:00.000-06:00

By the time Levi and I arrived at the hospital, Justice and many family members were already there. There were no time for greetings or comforting, we were the parents and soon realized they expected us to be the Master of Ceremonies, the ringleader’s of Justice’s personal circus.

One of the first things I remember when we arrived at this Neonatal Intensive Care Unit (NICU) in the larger hospital was the smell. I’m not sure what causes the smell, the soap, medicine, maybe it’s the floor cleaner but it’s a distinctive smell. I’ve only smelled it once or twice since our time in the NICU, every time it stops me cold and instantly I am whirled back to this time.

When we first arrived, we were directed through the first set of heavy doors where we were told to scrub our hand with a very strong soap and make sure we did not have any cold sores. This suddenly worried me because I get cold sores when I’m stressed and this was about as stressed as I thought was possible. If I got a cold sore, I would not be allowed to enter the NICU thus I couldn’t be with Justice. This did not help my stress level. However, I was very blessed and did not get a cold sore through her whole stay in the NICU.

When Justice was born they were building a new hospital across the street but at this time we were “old schooling it” in the old building so I can only describe the way the NICU was at the time. After scrubbing up, you went through a second set of heavy doors and entered where the babies were. It was a long rectangular room with a baby in an incubator about every 10 feet. Each child hooked up to monitors that alarmed a chorus of bells and beeps depending on what was in need of attention. Nurses and doctors moved with precision juggling stethoscopes, IV’s, syringes and oxygen tubes.

On the way to the area where Justice was we passed preemies who’s beds were shaking at lightning speed with blue neon lights shining out from under plastic wrap with tangled up cords and tubes running to them. We saw a larger crib with a baby with deformities on a respirator and a trake getting ready to be released home for the first time. “Really? Are her parent’s doctors?” I thought. “I wonder if they will expect me to take Justice home like that. God I hope they cure Justice first before they send her home. I don’t know how to do THAT kind of stuff! I’ve never even seen a baby like that before!”

Once we reached Justice, a parade of doctors came by to introduce themselves. I wish I could remember more about this time but it all began to run together. Giving birth, lack of sleep, my daughter being resuscitated was all catching up with me and still there was no time. The nurses gave me one of their high-rise office chairs to sit on so I could rest a little and sit beside Justice. The doctors continued to come by, read her chart, look at her then unload a wealth of medical diagnosises on us. Most of them would end in the classic statement/questions that apparently the Master of Ceremonies is supposed to answer. We would do our best but at this time, I couldn’t have told you what the N in NICU stood for. It’s Neonatal, the first 28 days after birth if you were curious.

As time went on and with the help of our Neonatologist, we got the hang of things. It didn’t get easier but we did figure out where the rings in our circus were and at that time, that was all I could ask for. That and for Justice to live.

Numbness and Denial

2010-02-15T20:18:00.000-06:00

Mother’s Day is supposed to be a day filled with love, joy and maybe a little pampering. Mother’s Day of 1999 was for me a day of numbness and denial to say the least. I had just turned 25 years old three weeks earlier, I had a 2 ½ year old son, I was buying a house, selling a house, looking for new furniture for the new house and that day gave birth to my beloved daughter who lay dying. Numbness, yes, numbness and denial, that was the day I learned why God grants us humans these two life saving things.

The pediatrician let me hold Justice before they took her to the NICU. Not the way a mother holds her newborn baby but the way you set a baby on a child’s lap. The doctor was actually holding her with a stethoscope listening to her heart and lungs as I looked at her for all of 10 seconds. I remember feeling a little put out, if you may, not really angry but confused and unhappy with the way she continued to hang on to my child and then took her away so soon. I really didn’t grasp what the scope of the medical situation was. I thought that by the time she handed her to me, everything was now fine. I think Levi did also because he later seemed hurt that he didn’t even get the brief opportunity I got to hold her. He had walked Cy to the nursery after he was born and they didn’t even ask him to take Justice. Looking back it seems easy to see why but at the time, it was very confusing and disappointing. We had so much faith in the staff and really, this kind of thing couldn’t happen to us. It happens to other people, not us.

We were asked if we wanted to have Justice baptized and we said, “we will at some point but we’ll wait.” In our minds, we were thinking, “Are they crazy? Why would we baptize her here and not in a church? No, I think we’ll wait and do it with our family around, thank you very much.” However, being the kind and understanding staff, they gently persuaded us that now was the best time and quickly called a nun who baptized her.

By morning it was apparent to every or at least the hospital staff for I wouldn’t have known any difference, that Justice really needed to be transferred to a bigger, more equipped hospital. We assumed they would bring in a helicopter to take her across the state. Her pediatrician explained to us that they had already resuscitated her a couple times and felt she would not survive a helicopter ride so she called for a plane to come pick her up. The plane was located in another state but she would ride with Justice on the plane when it arrived. Later, this would not be necessary because the staff on the plane was so qualified. However, within 12 hours of Justice being born she was taking her first plane ride. She would again be resuscitated on the plane but would make it to the bigger hospital alive. Due to the seriousness of the situation, I could not ride on the plane with her.

Usually when you leave the hospital, the hospital gives the new mother a diaper bag full of samples and coupons. I expected this. I was pleasantly surprised when they took Polaroid’s of her for me. I thought this was something new they had started; it never crossed my mind it was because these might be the only pictures we have of our child. Numbness and denial. Instead of the diaper bag, the hospital gave me a very nice traveling kit filled with a toothbrush, toothpaste, instant coffee, tea, a mug,journal,etc… If I were looking at me from someone else’s shoes, I would have said, well obviously, the travel kit? The pictures?…..How could you have been so sure she would live? I might have thought I was a bit slow to the punch but I think God was protecting me. Numbness and denial kept me moving forward. So 12 hours after giving birth, I checked myself out of the hospital, stopped by Wal-Mart for some necessary things because going home would have been an extra 2 or more hours out of the way, drove across the state and met my daughter a world I could have never imagined.

2010-02-15T09:52:00.000-06:00

Saving Justice

2010-02-14T15:42:00.000-06:00

Justice was born in a medium size hospital in the middle of our state. It was the same hospital I had my son in and was about an hour away from the town where we lived. This may seem a bit strange to travel so far to have a baby but I assure you it is quite a normal thing to do in that part of the state.

I have to say the care we received at this hospital was wonderful. The staff was so caring and knowledgeable which really surprised me considering they normally would not come across this level of intense medical problems. We only had one nurse that couldn’t really handle the stress and she was quickly dismissed from our room. My doctor kept me completely focused on taking care of me during the delivery process and directly afterwards and Justice’s doctor was extremely attentive to her. To this day, this hospital and staff are embedded in my memory as gifts from God.

The pregnancy was completely normal with the exception of chronic itching all over my body the last few weeks. We found out there were going to be complications as soon as my water broke. This was the point where the nurse was dismissed and my doctor was called away from his Mother’s Day festivities with his family. He immediately ordered to have me induced and soon after Justice arrived.

I remember seeing a glance of her as they whisked her over to what a few minutes earlier looked like cupboards but now had morphed into an elaborate medical table of some sort. She was a dark purplish blue color. It was shocking. I was not prepared for that. No one had ever told me that my baby could be born the color of a blueberry! I wondered what was going on but the room was filled with so many people and their bodies blocked what was happening I couldn’t tell. I assumed she was okay because my doctor just kept talking to me. He was asking Levi and me about all kinds of things that didn’t really matter and if there were something terrible, he surely wouldn’t be talking to US so much. Would he?

Soon Justice’s pediatrician turned around to update us. She, and to this day I can’t believe she knew how do it with so much thoughtfulness and kindness, told us we had a girl but she’s having a hard time breathing and her heart’s not doing so good. She said she has features of having a genetic syndrome and she’s not sure without more testing but it looks like Turner’s syndrome. Soon after that, Justice was taken down to the Neonatal Intensive Care Unit (NICU).

We sat in the birthing room for hours after she was born. The magnitude of the situation not sinking in. We made some phone calls to tell family and friends that we had a girl but…..But it still didn’t seem real. What had just happened? Not even yesterday, everything was perfect. SHE was perfect. SHE was fine in my tummy. Now we didn’t know what was going on. My doctor came in about 4 hours after she was born and had a talk with me about how some mom’s don’t go home with their babies. I didn’t even know what to say to him. She’s still alive. If she’s still alive then there’s hope right? But it’s bad, so it’s best to know all the facts. I really didn’t need any more surprises. But could I see her? No? It’s THAT bad! So do I call people? It’s the middle of the night. I HATE this!

By morning, Levi and I had been up for over 24 hours. They said “We might need to put her on a respirator….?” (approximately 4 AM, or 7 hours after birth), It was kind of a statement/question. We said you have to do what you have to do. And there it was, we had just been given the decision to save her life and fight for it or to end it and we didn’t even realize it at the time. I know people will have all kinds of views on this. Should they have been clearer with us? Should of, would of, could of we do this or that? Nevertheless, I truly feel it didn’t matter for me. I don’t know about anyone else. However, for me, I am glad I have her. Is it hard, absolutely! Do I get angry, frustrated and fed up, yes. But I am forever grateful I didn’t pass on this wonderful opportunity of raising Justice. If they had presented it in another way, I may have done something I regretted and I thank them for saving me.

1st Impressions

2010-02-12T12:20:00.000-06:00

We are always told to make a good first impression. Everywhere we look, we are bombarded with images of beautiful people with beautiful clothes, jewelry, houses and cars. We even see pictures of the perfect families. The well dressed parents with their model looking children. That’s what we assume our live will look like when we’re a 25 year old.

I had seen families with special needs children in them. I grew up across the street from a school for children with special needs. I played with them all the time. When the school closed, they were integrated into my school but I never stopped to think what it took to raise or to provide medical care for these wonderful children.

Justice has so many aspects to her personality. Like all of us, she’s not just one way or in one mood everyday all day. She is extremely patriotic. During the Olympics’ she will cheer for the USA like no one else and has about 10 U.S. flags hanging in her bedroom. She’s also very witty, love to talk on the phone and listen to Kenny Chesney. She is kind to everyone except her brother and tends to be a little shy when people start treating her as if she is different. She also will cuss like a sailor, which at this point we at least figure she’s not cussing like a Marine. Just kidding, but she does tend to try out new words on occasion.

With this beautiful personality also comes a wealth of medical conditions including 31 surgeries. I’ll give a brief overview here but over time will go more into depth on them.

Justice’s main underline condition is called Noonan Syndrome. It’s a genetic syndrome that can affect a whole range of different systems of the body depending on the person. Science is improving but there still isn’t a really good test to use so the doctor basically looks at your child and their medical problems and sees if they fit the syndrome. That’s the simplest way I can explain it. Now each child with Noonan’s is different so this is what Justice is dealing with: 1Genetics - the basic “look” of Noonan’s 2. Cardiology (Heart)- Pulmonary valve thickening, Pulmonary stenosis, Bicuspid Aortic valve, Aortic stenosis, Heart Murmur (Stenosis means tightening) 3.Hematology ( Blood)- She was born with a Leukemoid Reaction or really high white blood cell count so she is watch for developing Leukemia 4. Endocrine- (Endocrine is like your glands and hormones) she uses this doctor for her Grow Hormone shots and in the past for Refractory Hypocalcemia or calcium levels 5.Gastroenterology (Digestive)- Non-Rotation of small bowl, feeding intolerance, dis-motility, GERD, Constipation, Bladder and Bowel Incontinence, Diarrhea, Gastroenteritis, Weight loss, tube feeding, wretching, 6. Neurology (Brain and Spinal Cord)- Chiari I Malformation, Tethered Spinal Cord, Headaches, Neck Pain 7. Orthopedics (Spine)- Scoliosis, Kyphosis, backbrace, 8. Other- Hearing loss, glasses, ear infections, sinus infections

Well, that is pretty much the jest of it. Some of these things affect us every day, some have been “corrected” but we have to deal with the side effects of the corrections. Some, I hardly think about until the doctor’s office calls for her annual check-up or I have to repeat it a hundred times to the hospital staff. All of this is part of Justice and helps make her who she is but does not complete her. I just thought it would be helpful for my readers to have somewhat of an idea of kind of things that will be coming up in future posts.

And Justice Makes 4

2010-02-11T21:43:00.000-06:00

There are two sides to every story, this is my side. 16 years ago I met Levi, the love of my life. Well, I take that back, we actually met when I was 10 years old and he was 15 but as you can imagine, we didn't really care who each other was back then. So let's just stick with the 16 years ago story. So I was in college and he was pretty fresh out of the Marine Corp and it was just about as close to love at first sight as one could get. Within the year I had moved back from college to be closer to him and soon after that we were planning our big Catholic wedding. About a year after the wedding came our son Cy. Cy was perfect. He was never sick, he made us laugh, we just loved him so much. We decided we needed another one. So by the time Cy turned 2 1/2 the new baby was about to arrive. Life was perfect! One more kiss to Cy before heading to the hospital to have the baby and we'll be home in 2 days..........Funny how a joyful memory can make you have to swallow back tears in a flash.

This is my life starting from that moment. That moment when I learned exactly how confusing it gets when good and bad collide. This well be stories of joy, happiness, triumph, thankfulness, gratitude, hope, grief, sadness, loss, self pity, despair, and anger. These are stories of growth. The growth of both spirit and body. The growth of a mother and her daughter seen through the mother's eyes.

I do not plan to sugar coat my stories. They will be bias, they are from my point of view only. They will be full of medical terminology which I will try to explain the best I can. This will be the raw uncut version of raising a child with special needs. I spend a good amount of energy making the world feel more comfortable with my daughter and her medical needs only to have to suck it up and take care of them myself. No one ever asked me if I wanted or thought I could handle this, I just do it. If I have to be vomited on or covered in her blood, that's what happens. That's what I plan to share. The real nitty gritty, highs and lows of fighting so my child can succeed and live life. I am also not a writer so I have no intention of using proper grammar or even proofreading past pushing the spell check button. Think of it as my own unique style and go with it.

So welcome to "Raising Justice." Soon you will meet a beautiful little girl that completely changed my life. I can't wait to hear how Justice will touch yours.