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/

Day 34 - pondering brain images

As some may know, the spasms started yesterday. Being in NYC already brings up bad memories. Good family and friends were the highlights for sure. 

And I have the Bellevue brain scans from August 9th and the 17th. 

I can view them on my windows computer. 

There I am, 10:45pm on a Sunday night. Clicking through images, thinking I'm a neurologist and I will understand everything. Then I sigh. I'm not a neurologist. I'm mommy. And my little boy is sleeping so I will too. 

Here are our gloworms. 

Rome Medical Group

All my ducks are in a row. After receiving the pre registration paperwork for the orthopedic doctor, I'm glad I didn't try going yesterday. You have to bring previous images IN HAND. She had no idea he had been to one before. Perhaps if the doctor would have glanced at his file she would have known. The next time a parent tries to communicate that there's reasons they can't immediately see another doctor more communication is necessary.  I'm calling Rome Medical Group tomorrow and they're getting an earful. 

In addition to dropping the ball with a proper referral, she made more mistakes. (This was not the first referral mistake. That one was referring to a new ophthalmologist without sending along the old findings)

After seeing Andy's weight, she told me he was too low on the curve and feed him more. She wouldn't listen to the amount of formula he was taking, which is the most a baby should consume due to iron levels. Then I told her he had acid reflux from the injections and spitting up every feeding. She repeated to feed him more. Had she asked what type of formula he was eating, she could have made the recommendation my friend made. Sensitive formula. Instant fix today, he hasn't spit up once. 

Rome Medical Group is getting an earful from me tomorrow. I'm spending 4 hours riding in a car, I'll have the time on my hands. 

Day 30- I fought Bellevue and I won

Some may know the battle I've had with Bellevue. From a lack of communication with clinic neurologists, to record release issues from moving. How difficult it is to reach anyone who speaks English. 

In March, with a new neurologist, I needed his MRI images. Bellevue ignored the request. Then on April 19th, a new MRI was taken showing no signs of brain damage. A more aggressive approach was taken by attending neurologists at Albany medical center for the previous MRI images. Then my neurologist finally received a disc. It had chest x-rays. 

We still have no MRI brain images. I'm going to NYC tomorrow, and thought I could just pick them up. I called Bellevue this morning to ensure it went smoothly. I was told after I signed the form it would take 10 days for the disc to be mailed. My son's rare form of epilepsy depending on those scans was not enough. 

I was ready to storm the castle. I took out my proverbial sword, and searched. I scanned through NYC public hospitals, and found the patients rights form. Andy's rights had clearly been violated. #15 to be exact. There was a number for the department of patient advocacy, for questions or concerns and to submit a formal complaint. And access to the state health department to take it further. 

I called the number and explained with examples why his rights were being violated despite their protocol. How exceptions are valid and a necessity for him to receive critical care. Like magic, she told me she needed to make a phone call for me and would call back. Less than 10 minutes later I'm informed to bring proof he is my son (birth certificate) and my ID and the disc will be ready for pick up on Friday. 

Never accept an answer that does not work for you. Every contract can be broken. 

Day 29

Chaos over doctors. 

Nurses trying to be parents. Pediatrician's trying to be neurologists. And a miserable baby.

After 3 phone calls this morning a lot is sorted out. I know exactly who I want providing service for Andy and when. I'm not indecisive, and I think it's refusing to "go with the flow" that's causing my stress. The nurse at the neurologist office is printing a copy of all MRI scans and X-rays that have been done so I can bring them to the orthopedic doctor. Our PT thinks it could be good for him to go, the ortho at Bellevue signed off on him, lets see what this doctor says. Hopefully it won't turn into another doctor that I travel to Albany for with my increasing standards. 

1 weeks worth of ACTH is done. 3 weeks to go. This is our 5th day of no spasms. We had the visiting nurse by today who took his vitals and taught me how to test his glucose. With his physical therapy, Andy started looking around more. He's searching for his toys. 

What was really impressive is that he did not cry at all during the shot. I'm so appreciative. Spending the day in bed together because his irritability has subsided. Tomorrow we have no appointments, but I may have a few phone calls to make. I have the last medicine shipment scheduled for in the morning. ;)

Day 27

What a wonderful Mother's Day I've had. Daddy has been helpful, so I haven't had to do very much. I had some sweet baby cuddles. 

We met the visiting nurse and she's nice. The only issue is our health insurance wants a $20 copayment and she needs to visit 3 times a week. We are checking if any assistance is available with her company. If not, it's not something I feel is necessary. There's no copayment to go to my pediatrician and it costs a lot less than that in gas. It's the same thing! She wants to be here when I give the injection and see me give one. I'm to the point where I don't understand the big deal. If I've done it 3 times with nurses watching, I'm sure it's being done correctly. The way Andy had been reacting to the medicine makes me want more privacy for my family during this time of healing, not more probing.

 

No spasms today. Lots of spitting up and crying. My poor baby. 

Day 26

Two days now of no spasms. Still irritable. Eating more than ever! 

Completely worth it. Daddy helped give the shot for the first time this morning. We can do this together. It's only slightly awkward taking Andy out with a mask on. 

The cool mist humidifier is helping keep the cough away, which is a relief. 

All I want for Mother's Day is another day free of spasms! 

Day 25 - skipped a couple nights

It has been too hard to keep up with everything, AND my blog. It shows how priorities shift when something needs to go. My days have been spent dropping Daddy off at work, then going to the doctors since Wednesday. We did the first ACTH shot in Albany on Wednesday. Then because of the time, and slowly needing to make the shot earlier in the day, I've had to go to our pediatricians office.

Monday he has his 9 month wellness visit, which is good because Dr. Pugh wanted him seen by the pediatrician next week anyway. In two weeks he has an EEG scheduled. If there are no spasms, we do the EEG, then I receive instructions for weaning. We will stay on the zonisamide for 3 months after the injections before weaning that medication. It's very certain Andy will have some form of seizures for the rest of his life.

I have to organize the deliveries of the medication because I have to be home, to sign for it and make sure it goes straight to the refrigerator. I've had to organize the 4 visits a week for therapy. By tuesday I should have a visiting nurse coming once or twice a week too.

Andy doesn't leave my sight, because it is essential to not miss any spasms. He had none on Wednesday. He had one group of them yesterday. If I had not gone upstairs to check on him, I would have missed knowing they happened. There was none today, and I know that for sure. I stayed by his side through sleep. He's eating a lot. And crying a lot. When he's full and happy, he is so happy. It's all about keeping him comfortable. We will be starting Zantac in the morning to prevent heartburn, I'm hoping it helps with his excess gas. I can hear him awake right now. He wakes every 30 minutes at night. Off to my baby!

My inspiration

So much for being unable to blog. I found inspiration. 

If I had a ranking of top 3 worst nights of my life, this would be one of them. Now this scale is not necessarily based on outward emotions, or how it is being handled; it is based solely on the permanent life altering moments that have happened or are about to happen. 

This comes in ranking #3. 

The very worst night came after finding out Sean had passed. 

The second was when Andy was rushed to the NICU and transferred to another hospital. 

Why is tonight so horrid? Reality is weighing in on Andy's odds. Calls from The National center for Rare Diseases. The amount of formality around beginning the medication due to the morbid risks it brings. 

So I wanted to blog about something different tonight. Beautiful and inspiring. I began speaking to my husband for the   first time a little over 7 years ago. I was smitten from the start, but he didn't like me that way. I thought he was weird, and I didn't like how he wouldn't show me a lot of attention. We talked on the Internet on and off for over two years. 

I never would have thought that person on the other side of the screen would become my life partner. The one who I hold hands with as we hit the bumps in life. My strength, my comfort, my better half. I can never lose all hope as long as I have him. It does not matter what tomorrow, or the next year brings. 

Day 22

We start the injections tomorrow morning at the neurologist office. 

I have nothing to say tonight. 

Day 21

One set of 12 spasms today. We move forward with the injections.

I explained to Andy's OT how he has been dribbling formula from the right side of his mouth every feeding and I realize he needs help with it. She told I could go to our service coordinator and request a speech therapist; or, I could go buy an electric tooth brush and she can help me. So I bought an electric tooth brush. She has been fantastic with Andy and I know she can help me with this. Andy's tooth also fully cut the skin this morning so it was time for a tooth brush anyway.

The nurse called from the neurologist office. I explained to her that there was no spasms yesterday, more today, so I supposed we were going to do the injections. She explained to me that she was pending approval from the insurance company but informed them I needed the medication delivered tomorrow. They should call me before arriving to make sure I'm home. She wants me to bring the medicine to his appointment on Wednesday, so after I'm trained I can give the first shot in front of them. No pressure or anything. She then asked if we had a nurse visiting and I told her "No, but I want one!" She is starting the process of contacting the right organization in my area to get started with a nurse coming by to help with the injections and/or monitor Andy. It is a huge relief and burden lifted.

I realize it will still be me doing the injections. That extra help to make sure it's going right is priceless. I'm not going to be leaving the house anyway. He has to have the injections for a minimum of 4 weeks. If the spasms stop, and an EEG comes back normal, then we can wean the medication off. If it takes longer, he will be on it longer. I think there a regular medicine he's given after them. If they start back up, we repeat the injections. We can do this.

I made skinny strawberry chocolate chip muffins for our last outing tomorrow. I hope all of our friends know they are very welcome to visit, as long as they have not been sick in the last two weeks and wash their hands. :)

Day 20

The day began as wonderful as could be. Daddy got up with Andy during the night, and I slept until 7:30. We took care of him together this morning, then the 3 of us went back to sleep. We set up the ac unit in Andy's bedroom and now his rooms is very cool.

After fixing breakfast and making sure my boys were settled with healthy snacks (sweet potatoes and grapes) in front of the race, I went shopping. Such a wonder drug retail therapy is. I came home in a great mood, and finished the race with Daddy.

Then we made a family trip to the zoo. I forced them both to wear sunblock. Andy slept the whole time. He woke up when we came home and was a bit cranky the rest of the evening.

There's one important thing I haven't mentioned.

No spasms.

Day 19

This weekend is like the silence before the storm. We know that next weekend will not be like this one. We don't know when the next time we will have a weekend where Andy is not in pain again.

The day was filled with lots of playtime with Andy, and then he slept the afternoon away. Daddy played guitar for him until he fell asleep tonight.

I did notice something new because I was waiting for him to sleep this time. I had woken him up for his medicine, and then he seemed wide awake wanting to play. I couldn't resist. Why would I mind? We set him up in his high chair and I helped hand him toys. Then the spasms started. So I brought him to his crib, and laid him with gloworm.

I noticed when he has a spam, gloworm goes flying. Then he struggles to roll and reach gloworm. I saw moment of confusion on his face as it happened over and over again. He couldn't understand where gloworm kept going. I'm sad for him. He started trying to roll on his side and look at me between spasms, since I was offering him gloworm by sticking my arm into the crib but everytime he would see me, the spasm would force him to his back. Now I know why he's woken me up by screaming since Monday. It's a nightmare to try and imagine how it is from his view.

Day 18

How many times can a baby wake up crying? A lot. Up all night again, running between his room and ours.
I was so tired I completely forgot about his OT coming by. I heard a knock at the door, grabbed my bathrobe, then was confused by seeing her at the door. She was right on time and I was befuddled. Thankfully Andy was ready, and she was so understanding. He did very well, and she can see improvement since Monday.

We walked to the library, Andy slept the whole way there. The stories were barely over and I could tell something was wrong. He then had a cluster of over 50 spasms in 10 minutes, until they slowly drifted further apart then stopped.

I called the neurologist because if that happened in the hospital he would have had emergency seizure medication. I was told that medicine could be only delivered through an IV. With us going on 3 weeks of spasms, and them not being gone, we must take drastic action. Any more time and we could lose Andy having any hope of a normal IQ. So we must start the ACTH injections. The paperwork is being started with the insurance company, and I will be trained on Wednesday at his doctors appointment. All questions will be answered then as well.

This is the website for the medication if you want more info: http://www.acthar.com/ispatient/home

It's heart breaking in every way possible. Our lives are about to become extremely limited, Andy will have a very compromised immune system. This medication has to stay refrigerated and I will be the only person trained to give it to him because Daddy can't take the time off off of work to learn about the injection. He can help me, I will definitely need his help restraining Andy every time, but that's it.

I'm cringing at our trip to NYC, but that's not optional. Legal obligations and whatnot. But it will now be limited. And then we will be staying in Utica until this is over.

I can't type anymore. I'm too raw and emotionally empty.

Day 17

It's been a couple rough mornings here. Andy isn't hungry when he wakes up, and doesn't really want to eat until after his first nap.

He had a total of 25 spasms today. They were broken up into two distinct groups. He did well otherwise.

He did great with physical therapy. For the first time, he sucked on his toes. And looked around for me when I left the room. He has no trouble leaning forward and his torticollis is much better.

We made the decision to end his phenobarbital. He had none tonight. It was only a couple days early, and he has been down to the final 1ml daily.

I'm not sure if I believe he could become even more aware than he already is. He's figured out how to hold onto the buckle on his booster seat.

We had a very fun play date with other babies at the playground. Andy got his first baby kiss, and reached out for other babies. He was so sleepy, I'm excited for him to become less sleepy with more time so he can get the most from his play dates.

Day 16 - autism

7

That's how many spasms Andy had today. Compared to the 78 he had on Saturday it is mind blowing. He slept most of the day away. If I tried to get him to play he was too tired. I'm hoping he's more awake for the playground tomorrow.

I was able to briefly prop him against pillows, without him launching backwards. It was such a beautiful thing. We went for a walk to the store, and he was such a ham soaking up the sun in his hat and glasses.

I made him creamed corn and he loves it. His swing has been a miracle for when he gets too grouchy. His teeth are slowly making their way in.

A story I read today really hit me. In the story, it was to spread autism awareness, something I wish there was more information about. Here's a link to the story:
http://www.facebook.com/photo.php?fbid=10151904685083957&set=a.10150437256498957.453227.182605663956&type=1

Here's what bothers me...
Why is taking Jon out on a date called "working to make lives better"?

I want real integration for those with disabilities. Not this half-ass attempt that is highlighted as charity (the way what the woman did was spun, I'm NOT insulting what she did.) I have big dreams. Dreams where we all live along side each other with understanding and acceptance, not pity and charity.

When I was 16, my first real boyfriend had cerebral palsy. It phased me so little that I was completely ignorant that there was anything "wrong" with him. Granted I was a teenager and wrapped up in myself. Maybe blame the homeschooling. There was never focus from either of our parents that there was any difference between choosing him and choosing someone without CP. I was friends with him for years, together for at least 6 months, and I never even asked what CP was. It did not matter. Why does having autism matter? Those with autism are human like me and my son.

No more separation!

http://www.autismspeaks.org/what-autism/world-autism-awareness-day

Day 15

Andy woke up at 6:15, screaming into his crib rails. Over and over I removed him and gave him his stuffed animals.

I received an email from his neurologist:

The following testing has all come back NORMAL:
- Cerebrospinal Fluid (CSF) Neurotransmitters
- CSF Pterins, Methyltetrahydrofolate, and Pyridoxyl 5 Phosphate
- CSF Lactate

He did well with physical therapy. Lauren was impressed with him hyper extending less and said she could only encourage more tummy time.

I noticed when encouraging handles on his bottle that his hands automatically pull downwards if something is in their grasp. But then later on he took a clump of my hair, looked at it, and shoved it into his mouth. He then appeared horrified and dropped it! I'm still so very proud.

I checked his mouth since he was being overly fussy and noticed he had a front tooth coming in. And oh was he fussy. Daddy came home shocked how aware Andy was, and that he interacts and is excited when I sing to him. Daddy found 3 teeth cutting in.

So tonight I went and bought some pedialyte pops for tomorrow. Hoping for a little, white tooth tomorrow!

And he only had 5 spasms! That's it!

Day 14 - no rest for mom

Andy woke up a lot last night. As in more than 6 times. It was so often that I was sleep walking... Or I should say running during some of it. From my bed to his crib and back. Could be teething.

He woke this morning at a normal time, then slept for over 3 hours. He had no phenobarbital in his bottle. He is on 1ml a night for the rest of the week, then we are done. Forever.

I see him waking up in front of my eyes. His frustration is being shown in the expression on his face, he's throwing his arms more in the direction that he wants. And when he can't get to it, he's expressing himself vocally. I didn't push his stomach too much today, and he didn't cry or act like he was missing the extra food he would normally have. He had OT and I could see his progress. He didn't try to hyperextend a lot, and let his neck fall forward more. He's holding onto toys better and looking where she's trying to get his attention.

I went to babiesrus and found Born Free sippy cups. Thankfully, all pieces are interchangeable so I added the handles to his bottles. I'm excited to see what progress can be made!

The spasms have slowed down. He did have a group of them, about 50 or so I lost count, when we were out. There was maybe 6 or so throughout the rest of he day.

I'm hoping he's asleep for the night. He's already been up crying once, but went to bed to begin with at his old bed time. One step at a time.

Day 13

Andy didn't have as many spasms today, because he slept most of the day away. When he was awake, he was very playful!

His progress has included: reaching when we are going to pick him up, sitting in his bumbo without hyper extending, and holding toys.

Tonight was exciting. Andy had projectile vomit out his nose and mouth. I'm very sure it's a side effect of the increase of medicine we started on Thursday. He has to keep us on our toes!

Day 12

Andy started the day at 5:30 this morning. I could barely believe I was hearing him crying. He went back to sleep, then woke 2 hours later. He is teething, a lot. I can feel at least 10 teeth under his gums, and part of his gums looked dark red/bloody. Poor kid.

It was nice to spend Saturday doing our usual routine. Andy liked going shopping even more, between going to the mall often and starting to see, he never stops looking around!

A very thoughtful friend came by today and dropped off a swing for him to use. When he got fussy around 6, I put him in it. He laughed! Oh, how he laughed!

He fell asleep after about 45 minutes, or maybe sooner. I had fallen asleep on the couch watching him. I had to wake him for his medicine bottle, then put him to bed. He didn't seem to mind.

The spasms were less, except on the drive home from the store. We heard him crying in the backseat and didn't think too much of it. Once I turned around, I could see that he was having repeated spasms,; each one cause his head to bang against the side of the seat and made him cry. I held his head with my hand and it stopped the banging. He stopped crying while the spasms continued. Then he had almost 50 after I woke him for that final bottle. I had no choice but to wait them out and count until they were over.

He is making more progress with his hands, instead of having them tucked in beside his waist he's had them on his belly!

Day 11

I'm almost too tired to write. Every day my list of things to do grows, but I lack inspiration to do anything more than hold Andy.
He had OT today, and Kathleen told me he is still making progress. And he had no spasms until we were out at the mall. He did have more spasms than yesterday.
We tried a training sippy cup because of the handles. He held onto it for a few seconds. I will continue to off it to him more.
The best moment happened after dinner, when Daddy was finishing feeding Andy.

Andy had been crying and fussy for a couple hours. He couldn't seem to be fed enough. I noticed he had gone silent. Like a scary movie, I looked down and slowly saw a trail of bright yellow runny poop (the world does need that description), down Daddy's jeans. I ask him to not panic, but Andy did poop down him. He kept saying, "Get it off me! Get it off me!"

As I was wiping the poop off of him, he even called Andy a bad baby! I still have tears in my eyes from laughter just thinking about it. What an incredibly typical problem to have.

Day 10

I brought Andy down the street to another Quest Diagnostics, and this time he was able to have his blood drawn. He didn't seem to mind it.

All in all today was a good day, 27 spasms, but lots of love and cuddles. His napping was also more back to normal, and he was aware when awake.

He had PT this afternoon, and Lauren said that he hasn't regressed, which is impressive since he hasn't been receiving services. The muscle on his neck that I was stretching out several times a day has gone back down completely; I haven't stretched it out in a week. He needs a few more weeks before we can expect progress to begin again.

He was throwing up on me after the 3pm feeding, so daddy brought home pedialyte. He loves the stuff! Then there was no more throwing up. We all sat outside and enjoyed cooking in the beautiful weather. The pictures look like Andy didn't like it so much.

I did receive a call from Dr. Pugh today - the spinal fluid sample tested positive for infection. He is very sure Andy's brain does not have an infection and was a contaminated sample from his skin. We discussed that the spasms were increasing as of yesterday, and the increase in medication tonight. The possibility of him needing injections is still there.

Only 10 minutes shy of the normal bedtime shows that life continues on, it the most wonderful ways.

Day 9

I'm sitting down and resting for the first time today.

Waking up meant the beginning of chaos trying to balance getting back to normal and our social calendar.

Andy's spasms do not know that we have other things to do. They are gradually increasing nonetheless.

He interacted wonderfully with his friend Paisley, and seemed to enjoy her company. I had to take him for more blood tests today; after two tries the woman couldn't get enough blood from him. We have to try again tomorrow.

I had some mommy time socializing with other mothers tonight, and as bizarre as it felt, it was refreshing. The world keeps spinning even if yours has been still for days.

To speak out to those asking how Andy or I am doing, we are not okay. We are not going to be okay for a very long time. We are getting by. When we are alone we cuddle and I whisper to him how much I love him. And then he seizes in my arms. We are lost in our own world of trying to keep him comfortable, and I don't want to be anywhere else.

Day 8

Woke up a little before 6am.
I find Andy still asleep, he wakes up in a good mood, and eats without a problem
Dr. Pugh came in by 7:30, excited that Andy only had one spasm in the last 30 minutes.
I ask more about the MRI scan, and the answers are the same, we won't know more until the actual images are obtained from Bellevue. The test results for metabolic disorders and genetic issues will take a long time. Follow up in 2 weeks.
Andy was then discharged.
We went back the McDonald house, Andy did not want to be set down, so I was happy to comply. He's going through a growth spurt, and the amount of food he was eating made my stomach hurt. And well, watching him have seizures now makes me feel sick to my stomach. It happens so often.
He napped most of the time we were waiting, until Ben picked us up. It makes me sad that the Volunteer who checked us out was shocked that we want to make a small donation.

The ride back was a time of reflection for me. The prospect of our now lifetime battle with epilepsy and our social calendar for the rest of the week. I feel anxiety about being taken out of my safety zone. That beautiful, protected bubble of other parents with sick children that I could talk to almost 24/7 if I needed support. Now I will be surrounded with parents of healthy children again. I imagine it being very similar to how Andy may feel one day because no matter his differences or disabilities we live in a world for the "healthy".

When I got home it was chaos, I had to clean up after the mess that was left by daddy then I assembled the grill. I left all the suitcases packed, and decided it could wait. Andy settled back home, he was a little cranky but mostly tired. He's asleep now, and his sleep schedule is almost back to what it was.

Now to wait up for the new episode of Awkward.

Day 7

I woke up at 5:30, and made it to the hospital by 6. I'm informed that Andy had a seizure, different than the spasm seizures, and he was given medication for it.
The video shows him sticking out his tongue and making feeding cues in his sleep. I'm told that he was also making a bicycle movement with his left leg, and arm motions.
Two hours later a resident comes in and tells me after watching the video that it was not a seizure. And an EEG would not show evidence of the seizure that has already occurred.
At 11am an anesthesiologist comes in with consent forms for the spinal tap. I find out it will be a "senior resident" doing the procedure. I felt fear in my heart, but I'm not the type to punish a person for someone else's actions. Then I find out Andy weighs 17lbs. He's gained 8oz since Friday.

After the tap I find out they had to try 3 times and there was blood in the sample. If another is needed, Dr. Pugh (his neurologist) will do it himself.

Dr. Pugh confirms that the video proves Andy did not have a seizure. He admits and owns up to his mistake. He was described something different than the video. He had brought 3 residents with him, and requested that I play the other videos for him. I proudly showed every video with seizure activity. I believe that if one of those residents can recognize and help even one baby having infantile spasms, it was worth my time.

We won't find out any tests results for a while, and the echocardiogram was norm. On Wednesday I can take Andy for more blood work and genetic testing. Being sleepy from the emergency medication means he needs to stay in the hospital but can go home in the morning as long as he is eating properly. He keeps waking to feed but sleeps the rest of the day away. Now he is napping in my arms, and is dreaming of seeing daddy tomorrow night.

The Ronald McDonald house has been extremely generous and informed me I can stay there with Andy, so we are in no rush waiting for Daddy to get out of work.

He is still having spasms today when awake;however, Dr. Pugh says that as of right now he does not believe Andy will need injections and we should see results with the current medications.

Day 6

We get to the hospital at 9:30am, and Andy is asleep. When he wakes up, he has multiple seizures or "spasms" as they are called. The nurses are confused when we tell her he is having a lot, mislabeled them as a cluster and paged the doctor.

Dr. Pugh comes in and the mistake is explained to him. We discuss how Andy is not improving with the increase in medication, he tells us it can take 5 days to see results and we will begin to see them tomorrow. He also informs the pediatric resident that his blood tests he ordered yesterday are not in the system.

Andy has his blood drawn, and the nurse tells me to put a maxi pad in his diaper. He will never hear the end of this. It was for the urinalysis. The day was filled with spasms, and a sad silence as we knew daddy had to go home.

After daddy left, Andy napped for a whole. Woke up, and I fed him. Laid him down and went back to the house. Dinner was not ready at the usual time and I was gone for almost two hours. I return to Andy's screams. The nurse tells me she tried everything. I hold him, and he goes silent. He gave me feeding cues, so I fed him again.

Not very long after he is acting sleepy, but hungry. It is around 7pm. I know that if I feed him more he will sleep through the night without medicine. They will not give his medicine until 9pm. Andy wakes at 7:40 from not being full, and spasms over and over until 8:15 when I insist he is given his medications.

This is a discussion I will be having with the doctor tomorrow. I'm getting up at 6am to make it there before 7am. I will be there for my boy, every minute.

Day 5 - both MRI scan results...

The day our lives were flipped upside down.

We woke up, and a fresh breakfast was already cooked for us. It was a nice way to start the day. When we arrived at the hospital, Andy was awake and happy.

The doctor came in, and said he had something confusing to discuss with us. He had the MRI results.

Andy's MRI was normal. There is no brain damage.

How can this be?

The doctors at Bellevue did not send the actual images of the previous scans, only their findings. Those had shown mild to moderate damage to the posterior internal capsule. It never explained the seizures during the first days of life, but did explain the tone issues and global developmental delay.
Now we have no explanation for anything.

The infantile spasms are still a concern, and definite based on the EEG. We were assuming the cause was an abnormal brain. That assumption is gone.

Now Andy will have 8 blood tests, another urinalysis, and spinal fluid tested. He has to be tested for many metabolic disorders. If those are ruled out, we will need genetic testing.

It's like being in the NICU all over again. The nurses have been very kind - Andy's case is "interesting" and "rare", and the support is felt from everyone trying to make this as easy as possible.

I'm overwhelmed by the kind words written to me in text, and on FB these days. I have tears in my eyes thinking about it.

I have a warm meal in my belly thanks to the volunteers who cooked at the House this evening, and I'm watching Andy rock in the swing that was brought by an organization in the hospital to help make the stay more like home.

I'm filled with happiness that he doesn't have brain damage, mixed with a dreaded anxiety for the next diagnosis. A lot will be known on Monday, so tomorrow is more time to think.

Edit: the MRI of the lower lumbar spine was normal. And seizures have continued today, and keeping an official seizure diary has begun.

Saying goodbye

Andy is so sleepy he falls asleep on my chest before being laid in the crib.

Day 4 - into the hospital

I'm a new person. I'm filled with hope and faith. Let me tell you what happened.

This morning was spent running around, packing final items and holding Andy more. He had no seizures. We arrive at the hospital, he's cranky and sweaty. 

EEG time. Daddy holds him, and we work together as a team. Andy does everything right on time, he's upset when it starts and has his first seizure of the day. Perfect. Then he drinks his bottle and falls asleep. Perfect again. The woman doing the EEG calls the doctor, asks him to come in while we are hooked up. He enters the room, he has already analyzed the EEG as it was being recorded.

Andy is officially diagnosed with infantile spasms. We have a plan. We go and have a more traditional sit down appointment with the doctor, and he sets our expectations for the hospital stay. We agree. 

After being settled into the room with Andy's new crib, I ask a nurse about us both staying the night. It's okay, but one of us has to sleep sitting up. Ben books a motel room for us, for the two nights he's here. It's distressing, because it is a shared room. Then I call to check the Ronald McDonald house. They have a room for us. Suddenly, my patience has returned.

The anesthesiologist and radiologists shock everyone and are ready to do his MRI scans tonight. 5pm. When our little man goes for those, we check into the house. Everyone is so kind, our room is beautiful, there is everything we could ever need.... From plenty of food, to game rooms and a laundry room. Dinner is hot and sitting out for us to help ourselves. I'm brought to tears with appreciation. 

We return when Andy is in recovery. He is awake, but groggy. It reminds me of when he was a newborn. I hold him and give him a bottle. Oh how I love my baby. He's having lots of seizures but now hooked o monitors and an IV. We go back to the ro, daddy helps feed him, and give his medicine. Double the seizure medicine dose. He falls asleep in my arms.

We walked back to the house, then sat on the porch watching the rain fall and exchanging war stories with veteran parents on the porch. All is calm, and no one can predict tomorrow. Our kids are strong and we will be stronger for them. 

Day 3

I should have known that no good has ever come from silence. Andy was silent, so I went to check on him when the alarm went off. This is what I found.

He was sweating badly. Immediately I undressed him, changed his diaper, and gave him a few minutes to cool down. After 10 minutes he still felt hot. The next step was to take his temperature. 99.5. Not a problem; however, warmer than any temperature I've taken for him. His skin felt sticky, and he looked green. More seizures. Long, horribly clusters lasting 4 minutes this time. I fed him breakfast, he fell asleep. On and on today my baby slept. He woke 2 hours later, still not looking too good. I took him out for a walk, dressed lightly, so he could cool off in the breeze. He was silent, and looking around. No seizures. We came home and he fell asleep as we walked in the door. He slept for another hour. Lunch, his therapist arrived. Andy smells bad. A sickly smell. We discuss all the progress he has made in the last month. She leaves, he falls asleep. This is our day. More throwing up.

Daddy came home, and helped. He understands why the house isn't clean. He tries to play with Andy. Not a lot of response, and Andy goes back to being a newborn, cuddled between his parents on the bed.

We had to wake Andy for his final feeding of the night. It felt reminiscent of his first nights home and being too tired from the phenobarbital. He appeared nauseous. One bite of food to get down the medicine, and a bottle for the rest of the medicine. Seizures began during the feeding; this was the first feeding from Daddy that he seized during. Salt was being rubbed into my wounds, watching Daddy hug him and whisper "Stay with me," the same words I repeat all day long during the seizures when I'm alone.

Our bags are packed now. The same bags that I was going to pack tonight, back when we believed we would be visiting my family. Very different but the same.  

Day 2

Andy started his new seizure medicine last night. He woke up this morning happy as can be. He didn't have any seizures until he started eating his breakfast, then he had a couple. After breakfast he was tired, and I laid him down to sleep. He woke up. He was crying, so I held him. Then he had a cluster of seizures. I recorded them on video and sent the email to the neurologist.
He napped in my arms. I cried.

His occupational therapist cancelled her session, we prepared to go out. I watched him, memorizing the way he plays with his toys, and the curves of his face.

The time we spent out was nice. Andy had a lot of seizures and cried so hard the entire time he wasn't sleeping. But I knew he could see/feel the sun on his face, and aware of the sounds surrounding him.

He continued to cry long after we came home. He wasn't wet, hungry, or teething. All he could do was cry. When it was time for the last bottle, he cried because I kept pulling the bottle out of his mouth. He was seizing so how could I keep feeding him?

I'm giving him two seizure medications at this point. One by liquid, the other in a powder. By the end of the weekend I could be injecting medicine into his legs.

I'm done for the day. I have nothing left to give to anyone.

Day 1

He wakes up. I carry him downstairs for breakfast. Seizure. I sing him a song. Seizure.
The physical therapist arrives, he must be woken from a brief nap. How many seizures can he have in those 30 minutes? At least 8.
All day. It only stops when he's sleeping.
The phenobarbital being slowed down makes him cranky and unable to sleep. Being unable to sleep brings on the seizures.
By 5pm he has one that lasts 2 minutes straight. It was the longest two minutes of my life. For now, he is peaceful. In his crib he is just another baby. Just my little boy.
The dawn is more frightening than the dark this time.

Every day, like the one before

Today I noticed Andy was doing something different. Well, I noticed it two days ago but it became more frequent early in the morning. I called his neurologist, I was told he would call me back. A very reassuring call took place, with instructions to video tape what was happening and contact his pediatrician. The pediatrician's office said they would refer to neurology and request an EEG. Someone called to schedule the EEG on Friday. After emailing two videos, and waiting on baited breath for hours, then timing events- a call. I was away from my phone, it was 5pm. Office closed so I couldn't call back. 5 minutes pass.

The neurologist calls me back. Compliments my videography work. He tells me that my son is having seizures. I'm numb. All that I can say is, "okay".

My own brain functioned enough to turn the phone to speaker, so I wouldn't be left repeating words to my husband. We heard the diagnosis of seizure type, treatment options and a vague prognosis. The 3 of us made a plan of attack, as poor Andy laid next to us unknowing and vulnerable. I will hug my little boy tighter tomorrow.

My perfect baby boy

 This is the hardest story to tell, but I know it like the back of my hand. 
After having two friends ask me today what Andy's medical issues are, I felt it was time to write it out.

Andy was born limp, due to being deprived of oxygen during a prolonged labor. Within 2 hour of birth he had a seizure and was transferred to Bellevue because they could do a cold cap. Andy did not qualify for the cold cap procedure. An MRI scan showed mild to moderate damage to his posterior internal capsule, which is a portion of the brain that runs through the basil ganglia. The EEG scan confirmed the seizure, but with where the activity was located it did not correlate with the brain damage. They do not know the cause of the seizures. The next day he had another seizure, and they began the narcotic Phenobarbital. They then did a 3 day video EEG where he was attached to the EEG for 72 hours. While on the medication there was no activity. A week later when the medicine wore off, they did an EEG and saw seizure activity in the brain that had not had the time to manifest into a physical seizure. He was placed back on the medication but in a lower therapeutic range. The initial dosage had him asleep for the first 10 days of his life. He was in the NICU a total of 16 days. The last 6 days had been due to him being too tired to wake for feedings from the medication and needed a feeding tube.

 He is still perfect, and he has just started mimicking the sounds that I make.

A day in my shoes

7:00 - Wake up
7:05 - Prepare Hubby's lunch
7:15 - Make breakfast (eggs and toast)
7:35 - change Andy, dress him in warmer clothes
7:45 - eat while feeding Andy oatmeal
8:00 - Feed Andy bottle
8:20 - Fold laundry
8:35 - Lay Andy down for nap, continue laundry
8:45 - shower
9:00 - Andy awake
9:05 -  bathe Andy
9:20 - pour second cup of coffee
9:25 - feed Andy pears
9:40 - Flip through cookbooks, take photos of recipes with phone
10:00 - Lay Andy down for nap
10:10 - Make snack
10:15 - call cable company
10:40 - sweep floors/pick up trash
11:00 - wash dishes
11:15 - mix/bake meatballs
12:05 - meatballs in slowcooker
12:10 - wash pan from meatballs, and coffee pot
12:15 - take out trash
12:20 - check on Andy
12:25 - begin writing this blog

Stay at home mothers don't do real work, right?

It's not like we have a job or anything.

Being a Zombie

Becoming a mother isn't all happiness and roses. It was never my aspiration in life to run around wiping up shit, and holding a bottle into a mouth for hours of the day. I've been thrown into a deep depression that brings on thoughts of our mortality because bringing life into this world made me realize that before I knew it my own would end.

I found this article wonderful for those reasons.

http://www.renegademothering.com/2013/02/09/i-became-a-mother-and-died-to-live/

Making friends

Andy had never seen so many babies in one place. He was with 6 other babies today.

Formula = pharmaceutical companies

You plan on your entire pregnancy to breast feed. It's in your heart, you've attended breast feeding classes. Then at birth your child is rushed to the NICU. He/She is too weak to breast feed. So you pump. You pump and pump but not enough milk is dropping fast enough, and your precious breast feeding dream gets delayed. The baby needs formula.

What formula is given? Similac Advanced.

Now the question is why?

My battle with Similac started when I was pregnant. It's very close to the same war I've had with Enfamil. One day I received full size containers of formula in the mail. I did not sign up for them and had intended on breast milk only.

Any mother who has breast fed knows that it's hard. And what could possibly be more tempting at 4am when you've had no sleep, your baby is starving and no end is in sight? That container of formula you tried to forget that you have.

My baby was transfered to a NICU away from the hospital I gave birth at, so I went home as quickly as possible. I used a manual pump until my electric came in the mail. I would rush everyday to the NICU, first walking, then the subway, then more walking. I walked 2 miles everyday from day 2 of postpartum onward. I had my breast milk on ice in a bag. It was a race to the hospital to make it before the first feeding of the day after yesterdays supply would run out. I was barely making enough to cover all of his feedings and the amount going into the feeding tube continued to increase with no increase in my supply.

On day 2 of rushing my milk to the hospital, I go into the pumping room to make more and leave my milk, defrosting, on the shelf next to my son. I walk back in to see a nurse bringing a 6 pack of Similac Advanced to give him. She used the excuse that he needed to eat right then. Why would nurses prefer to give a NICU baby formula over breast milk?

Towards the end of his stay, on day 14, I heard a neurologist speak to the mother of the other baby in the room who was also there due to seizures. She asked the mother formula or breast milk? The mother said formula. The neurologist PRAISED her. Because the formula can be measured, it is more nutritious for the baby. This was a very personal insult for myself. I was exhausted from pumping every 2 to 3 hours round the clock to produce, but here was this doctor saying that breast milk is second best? Why did studies show that babies in the NICU who receive breast milk recover better? Why is it proven that any baby who receives breast milk for any period of time is less ill?

My quest for answers continued on.

Later that afternoon I was sitting in the lobby area of the NICU with my husband, finishing up our lunch. One of the receptionists noticed that magazines had been left on the coffee table and she told her coworker that magazine were not allowed. Why not? Because they might have formula advertisements and they wanted to encourage breastfeeding. My heart was put at ease. The coworker flipped through the pages, and noticed a formula advertisement. The receptionist stated that because it was a similac advertisement it was allowed since it is the ONLY formula on the market that does not cause colic.

I'm speachless. How is Similac any different than pharmaceutical brands? I don't think it's any different at all.

My son uses the generic and his pediatrician says they're all the same.

Enough said.

Unfriendable

We spent a year and a half in NYC. When our time came to close, and we were about to move we had one final get together. A few friends showed up. At that moment we had not seen most of those who did arrive in a very long time. What struck me the strongest at the end of this night, was that the friends who came were friends that my husband had previous to my moving there. 

What was wrong with me?

That question was pondered frequently during my time there because I never made any friends on my own in a year and a half. I take that back, I made two. 

I became friends with my husband's friends but does that count?

What was broken inside of me? Was it a vibe I was giving?

When I lived in Florida I made friends everywhere I went and it was easy. Life was easy. The lowest point of my life was probably during my pregnancy when I became too sick to make it to work most days, my husband was unemployed, and I sat in a bedroom 24/7 because we did not have our own place. I lived in a city with 8 million people but none of them wanted to know me or let me know them. I was never more alone.

Now moving to Utica, I've made friends already. Some of which I'm seeing tomorrow, and then more I'm meeting up with next week.

Maybe I'm not broken. Maybe NYC is.

Withdrawal symptoms

My son has been on the medication Phenobarbital since the day after he was born. And it has been quite the experience, a baby on narcotics.

He was asleep for the first week of his life, never having the energy to open his eyes. Then never being able to be awake for a feeding a week after that.

We have watched his development be stalled for the last 6 months. There are moments of sorrow, pity and guilt. The guilt is what will kill you.

What would I ask of those who hear my story?

1. Do not ask why I picked the hospital I did to deliver.
2. Do not mention that you already heard bad stories of that place, and look with those eyes that I should have known better. Think to yourself that you should have been a better family member/friend and told me while I was pregnant.
3. Do not complain of any healthy or society standard "normal" issue your baby has had to deal with. Such as circumcision or shots, or even trying to get them to sleep through the night.

Now as he is being weaned off his medication we continue to watch his suffering. He is constantly fussy. He is uncomfortable. He can not sleep because his body is having withdrawals.

 It's nice if your child is developing "early" or "ahead", but remember to be thankful they are developing at all as some can't because of the obstacles in their path.