PTSD- its not just our veterans

I don't speak often of my leftover mental scarring from Andy's birth. I do suffer from PTSD and it rears an ugly head.

A lot of women that I know have been having more babies lately. I'm so happy for them! In the past, I had deep feelings of jealousy and anxiety over someone I knew giving birth. Now I feel an overwhelming joy for them. It is so much more than that.

It's reading of another birth, seeing another happy friend holding her new born. And it hits me, like a soldier back from war hearing a gun shot. I'm there, tears are pouring down my face. My baby, not breathing. My baby, being taken away from me. I can smell the hospital. I can hear the monitors beeping. I look at my now toddler, and I think of how close he came to never being here at all.

I breathe.

Why do I breastfeed my children?

I finally watched the documentary Breast Milk on Netflix after I gave birth to Jane. 

One of the more interesting things they pointed out was that every woman who breastfeeds has a reason.

 It is more than just because it's healthier than formula. If it was that simple, no woman would give her child formula. Who doesn't want their child to have the healthiest food they can provide? No, there is more to it. More than the antibodies, more than the lowered risk of health problems including cancers. 

Why do I give my children my breast milk?

I believe in my milk. The way some people believe in God, I believe in my milk. 

My son was born not breathing, and once I knew he was going to live and needed to eat, I knew he needed my milk. I didn't produce anything the first couple days, but once I did, I knew he needed it. His brain had been damaged, and what's the healthiest formula for brain development? Breast milk.

So I pumped, pumped and pumped some more. Before every bottle, and after every bottle. 

3 months in, I gave up. I was depressed, pouring the formula was easier. I was slowly getting less and less each time. I was so proud of those 3 months. 

I still believe breast milk is the best any child can drink. I will continue to give Andy my milk until he's 5, when his brain has done the majority of its development. 

I breastfeed Jane because I can. I don't take my ability to give her what's the most natural source of nutrients for granted. I breastfeed for women who can't. I breastfeed because I wasn't able to the first time. I do it for that little smirk she gives me when she's content at my breast.

I can't imagine feeding her any other way.

Twice as Much

As I write this, I can hear the motor grinding on my breast pump and my coffee is cold. I'm pumping the milk for Andy's morning bottle.

After giving up pumping when he was 3 months old, I never thought I would miss him having my milk so much. Now its a treat to have the time to pump for him.

Balancing both kids is easy and hard at the same time. Its twice as many diapers, twice as many trips to the car, and twice as much love.

Story of getting a stander pt 3

Within two hours of submitting for a medical review our claim was denied. Based upon the diagnosis there is not supported  documentation in medical journals that show a stander is a necessary piece of medical equipment.

I told her I had only one question.

Is there a diagnosis out there that does qualify for a stander?

She said no, not in my experience. There is no proper documentation that shows it to be necessary for any diagnosis.

Appeal information is coming in the mail. I'm going to appeal this. I have an advocacy group I'm contacting on Monday for help. I cannot let this issue go. Andy has received a stander from TRAID yesterday that fits. We do need a tray for it and we are open to anyone who might be able to help put one together.

If I let this issue with the health insurance go, not only am I letting down Andy, I am letting down every parent and child suffering that needs help with a stander but this insurance company won't help them.

I will change everything I can for Andy. I will make this world a little different. I am only one person, but every time something changes it is one person and it is everyone at the same time.

Story of getting Andy a stander pt 2

I'm stuffing puffs in Andy's mouth as I type in hopes of him letting me have a few minutes to write this up. Starting yesterday, at around 4pm when waking from his nap, he's been screaming. Not for a particular reason, except he wants to be held. Mommy can only do so much holding!

I called the health insurance company to verify what steps needed to be taken to acquire a stander since our insurance became active today. What do I do with the prescription from the doctor? How do I submit for a medical review?

I'm told to contact the in-network provider I was given, and to give them the prescription. Called the company and they don't sell standers. During this, I received a voicemail saying the prescription is ready. Have I mentioned what a great team of doctors we have on our side? His orthopedic doctor is going on vacation for 3 weeks and she made sure it was ready.

I called the insurance company again. (This is call #3 for those counting) and this time I'm told that I should read the prescription to them when I obtain it, that's how the medical review process works. Once that's done, they will provide me with more providers. I drove out to Utica, and called to submit the review from my car in the parking lot. It will take 3 business days. I should hear back on Tuesday or Wednesday of next week.

If not approved, I confirmed there was an appeal process.

I'm nervous because instead of stating cerebral palsy as the diagnosis requiring the stander, the diagnosis code his doctor provided was for hypoxic ischemic encephalopathy. This is the initial cause of everything that's involved with Andy's condition.

Here is a link if you would like to learn more about hypoxic ischemic encephalopathy.

http://emedicine.medscape.com/article/973501-overview

Story of getting Andy a stander

If I tell you the story of how we got a stander for Andy I would have to start at the beginning. The very beginning.

Back at the beginning, both myself and my husband were unemployed. My husband was finding odd appearances he could make, sometimes he had one or two a month, some months he had none. We lived in a one bedroom apartment in NYC with my in-laws. It wasn't easy, it wasn't as hard as others had it. My husband looked for work for 18 months until he received the call from Oneida County. Our number was called. A call that so many college and law school graduates never receive.

We still struggled mightily. We were thankful for the food on our table, and Andy's medical bills made us become very far behind. Then a light came- help from charity for children, a local charity in Syracuse. They help us now with the medical bills.

In July of this year, Andy's physical therapist informed me he was getting to the age where a stander would be beneficial. I had never heard of this device before. She put in a request with TRADE for Andy to receive a stander when one became available. At last, in September, one was available.

A very nice man who worked at UCP drove it home for me in his pickup truck because it would never fit in my car. We placed Andy in it, and it was FAR too big. We returned it shortly after.

And we waited. And waited. I called my health insurance company at the time, and they only cover 50% of medical equipment after a pre-authorization process. We waited some more.

And opportunity for better employment came open to us, and my husband applied. He was offered the job, and with the job came a new type of health insurance.

I prayed. I don't talk about praying often, it's intimate for me, but here I am talking of it two blog posts in a row.

I took the leap of faith. I told Andy's PT that we could not wait any longer. It is November, it's been 5 months. Begin the process of getting the stander, we will go through the new health insurance and whatever they don't cover we will figure it out.

AKA we might eat ramen noodles for months. We will figure it out.

Let me explain what a stander does. It stands a child who may or may not have head control. By being in the standing position, bones and muscles continue to grow and develop properly. Unfortunately if a child with cerebral palsy does not have one, he or she will most likely need surgery to correct the damage caused by not having one. It increases the chances for a child to stand, and one day walk with or without assistance. It increases general health as well.

I received a call last night from the therapist. She told me the company she uses to obtain medical equipment informed her the stander would cost $2,000-$3,000 out of pocket. We would pay them directly, then if, and only if because a lot of insurance companies do not cover them, we could be reimbursed by our insurance for the amount they cover.

I cried for hours. The guilt was so overwhelming I couldn't eat. All I could think about was the physical possessions that I've so selfishly acquired during the last year. Especially the vehicle that I drive. Would I not take back that vehicle if I could so Andy could have a stander? What value did my personal belongings hold if I could sell them to give him what he desperately needs?

It was a rough night. And despite what everyone tells you, daylight brought no relief.

I finally called our new health insurance company, our coverage starts tomorrow.

If you provide them with medical information and a prescription and wait for approval, and go through an in network provider, they do 100% coverage with nothing out of pocket.

Now I've called and left voicemails for therapists and doctors. I'm ready to do this.

15 month check up

Today was Andy's 15 month check up. Let me share with everyone what we discussed:

He's no longer on medication.
He receives 4 therapies, 8 times a week total. We are increasing to 9.
His tone is reducing.
He's verbalizing.
He's gained a few ounces.
He's healthy.

And that's all. No talk of "milestones" or other measurements that try and push one child in front of another.

I am not ashamed. I am proud. I am not in the "milestone" rat race, and I do not believe that another parent is better then me because their child can hit those "milestones" that mine cannot.

Those "milestones" don't make the parent. Just like they don't make the child.

Praying for patience

Many, many years ago, I read where someone (on the Internet) wrote that if you were going to pray to God for something (a new car, better health, etc) to have the most success you must pray for the improvement of yourself or others (increased skill at work, a doctor's knowledge), to achieve your goal.

I was very impatient and easily aggravated. The most logical request to pray for was patience. If I could have just a bit more patience, I could accomplish anything and have peace within myself. I would meditate on this for hours. Some of you may remember when I chose to give up anger for lent; all of this in hopes of finding the patience I sought.

It was not until I gave birth to Andy, that I fully received my request for patience. Now I have all of the patience I would need. I have the privilege of practicing my patience everyday, as I care for a child who acts like a baby far longer then one typically would. Long gone are my expectations, and I can find happiness in everything, and take happiness from each day being the same.

Last night I had a dream that Andy said Mommy. Even if my dream never comes true, I will wait with patience.

For my little drummer boy:
 "Aaron's heart was filled with joy and love. And he knew at last that the hate he had carried there was wrong. As ALL hatred will ever be wrong. For more powerful, more beautiful by far than all the eons of sadness and cruelty and desolation which had come before, was that one tiny, crystalline second of laughter. Blessed are the pure in heart, for they shall see God."

I will always be 34th st.

As I wiggle "They're Real" mascara on my eyes, a very rare occurrence that I wear makeup these days, I'm taken back to when I would get ready for a day at Sephora. I hope that one day Andy can realize what his mommy did, and be proud of her. I used to dream of the day I would be in corporate, flying around the country to train others. My last few days at work I had taken over for a brand rep who was there sick and was teaching others how to use the products. I beam with pride when talking about my $500, $800 sales and how I worked at the center of the universe. Those skills have remained; they are manifested in how I teach others about who Andy is. And those are priceless. 

Gratitude

Yesterday we traveled to Rochester for another opinion. What I heard turned into the most humbling moment in my life. 

We saw Dr. Kwon. We wanted her opinion of the MRI's (she's reviewing and will call us back) and how she would have treated the IS had we been going to her clinic/when she would wean the Zonisamide. (We are currently going to start weaning in a week).

She told me that she had never seen a case of IS being brought to control as fast as Andy's. If he was seen by her, she would have began with phenobarbital and ACTH would have been the last resort after every other medication. She never uses Zonisamide. She also would have predicted a far poorer outcome then Andy has. She explained that this is difference between an older doctor set in their ways like herself and a younger one like Dr. Pugh in Albany. And they never would have known they weren't doing the best for him. 

How do I look Dr. Pugh in the eyes and thank him for saving my son's brain? I'm overwhelmed with gratitude and each word feels more inept than the next. 

Negative energy

I've learned a valuable lesson last week. 

No matter if you like someone, or dislike someone, they have been in your life. And when their life is over, it does effect you. 

I held so much negative energy for one person. I thought I had found peace and forgiveness years ago. My mistake. 

On Thursday my negative energy exploded everywhere. It hit all the walls, the ceilings, I couldn't handle being inside of a building. Once it escaped, it was gone and I found true inner peace. 

Reflections

Andy's birthday is around the corner. This is a milestone that I don't take for granted. 

A lot of parents spend the day their child is born celebrating. It's a joyous time filled with visitors, and pictures. Or at least lots of baby cuddles. 

I didn't. I spent it in tears fearing for my baby's life. I know I'm not alone, I know that countless others had similar NICU experiences. But what about the ones who carried a full term healthy baby and then the birth is where things became complicated? And then that baby was transferred to another hospital without you?  I haven't found them yet. It could be a lack of searching on my part. A deep self conscious part of my existence that savors just one experience that's all for me. What if I found another mom who went through what I did? What if she handles it "better" than me? 

 

I'm overwhelmed with jealousy of others who had an experience where they were never separated from their baby. This all leads me to the conclusion I cannot do it again myself until I can be genuinely happy. How can I be happy for myself if I'm not happy for the mother next to me? 

This is not to say I haven't made progress in the last year. I can talk about it now, I can ask other mother's about their experiences without blurting out spiteful, argumentative comments. 

I like to think I will get there. 

If it wasn't this, it would be something else.

The appointment went good and bad. 

For the good we discussed how this could all be caused by the lack of oxygen at birth or a genetic disorder. After hearing of Andy's vision issues he was able to recommend even more strands to check for. 

His progress was impressive, and the doctor was amazed. He laughed, danced and played with his feet to show off.

The swallow test (of course it has a fancy name that I can't remember) and referral for a GI doctor has been made. It's looking like a possible G tube. 

I feel any sense of control slipping away, what a false security I was adjusting to. 

I've seen this coming, as others, namely his pediatrician didn't say a single warning. How hard is it to warn a parent? What are you afraid of, my tears? I'm a vulnerable person, I do feel emotions for my child's hardships. I still deserve full disclosure. We will carry on with the rest of our day now. 

Genetic testing again

Tomorrow is Andy's next neurology appointment. We will discuss his progress, any possible seizure signs, more genetic testing, and schedule a swallowing test to be done at the hospital. The testing this round will be an Infant Epilepsy Panel, and the company that runs it will come out to our home to take his blood. My poor little buddy.

Even more work for me tomorrow, I'm going to be contacting the Medicaid Service Coordinators in my area and requesting a care at home waiver. Then I'm contacting the Division for Developmental Disabilities to see if there are any services I'm missing. I need to follow up with getting in contact with his new feeding therapist and how progress is going for his vision therapy. I found out recently that vision therapy is another service that can come here to take care of Andy!

Last night he slept very little. My guess is that he's hitting more cognitive milestones. He's becoming a sweetheart who laughs over hugs and kisses. 

Lost treasure

I cannot complain. IS snuck into our life like a home invasion in the middle of the night. It stole a few precious treasures, but it didn't take everything. 

We still have our boy. We still have laughs. We don't have spasms. 

At some point, and I can't put my finger on when, Andy's development did regress. In the area of feeding. He no longer sucks on the nipple of his bottle. He chokes on everything, and has the tongue reflux of an infant. Now we start feeding therapy. We will be on the bottle for a long time from now, and even longer for bites of food. My boy who could eat fish cakes with me, can only eat yogurt. 

This is one treasure we lost. 

Day 38 - weaning day 3

Andy laughed today. It wasn't a giggle, but a "heh heh" that he had no control over. It was the most beautiful sound I've ever had the privilege to hear. 

I'll keep the good days coming.

He didn't nap much today. 15 minutes this morning, then a 40 minute nap in the evening. He is full of play. More and more play time is all he wants. I'm more than happy to give it to him. 

Day 38 -2nd day ACTH weaning

Andy is doing more than ever before. He sat on the couch and had a conversation with us saying "mom" and "mama" over and over again.

He's been satisfied several times today with playing with his toys. With me and by himself. He's enjoyed tummy time, and has not been shy about letting me know he wanted to cuddle. 

Being without phenobarbital, no spasms, and very little ACTH is a privilege we have never had before. I'll savor every moment before the next form of seizure comes, with the next line of medications. I will log every moment to memory to carry us through the bad times.

Day 37

First day of weaning. 

The shot itself was interesting. As soon as the needle hit his skin, Andy started kicking and then grabbed at the needle in his leg. His wiggling made the shot take longer because I have to pull back on the shot for blood before injecting. 

His personality has been much improved, even in comparison to before the ACTH began. I swear those spasms caused him so much pain. He gave little smiles especially when holding hands. That's how he was when he started smiling for the first time. If things go as before, next will be smiling during diaper changes and then mimicking smiles. I hope we can get back to that. 

Andy's hands were open more often and it was easy to open them. I stared at his palms all day. I've never had the opportunity to look at them and memorized them. They are the most beautiful that I've ever seen. 

Day 36

EEG at Albany medical center.

The hypsarrhythmia is gone from the EEG. No sign of infantile spasms. 

It does show abnormal activity. Andy will always be prone to have seizures for the rest of his life. 

Tomorrow we start weaning the ACTH. If a spasms happen, we go back to the full dose for two weeks and wean again. 

If/when another type of seizure happens I have emergency medication and I'm to call 911. 

One day at a time we go. Will know his opinion on the Bellevue MRI scans in two weeks. 

Day 35 EEG eve

The night before appointments bring more excitement then anxiety these days. Tomorrow we do an EEG and see if these past two days without spasms have really been without them. I recorded a video of the way Andy's eyes have been looking up in case it's important. 

The shots might not work forever, but they are far better than without. Each injection is easier for both of us. If Andy has to continue on them for more than the next two weeks I'm going to start practicing doing them alone. With daddy there, just to see if I can. 

I've found the story of Dr. WJ West mind blowing and fascinating. I find everything about IS interesting. It can not be recreated in lab tests with rats because no other animal has it. It is unique to the human brain. 

You can find more info here: 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093242/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/