Why do we need to be frugal?

I know if I was reading this blog I would be kind of confused as to WHY my family needs to be frugal.  We have great health insurance and Early Intervention pays for his therapy.  So here is a little breakdown.

Bear had a fever in January for 4 days.  When it started we went to the pediatrician.  $20
Then he had his checkup with 3 different specialists. $105
Over the weekend it spiked to 104+ so we went to the Emergency Room.  $100
January meds for the month: $30

In February Bear spiked another fever while we were out of state so we went to a local doctor.  (The one my parents used) $20
His fever, again, spiked to 104+ on a Friday evening so we went to the Emergency Room and they drew blood, did a urinalysis and a chest x-ray.  $100 co-pay and $62 coinsurance for the labs.
Sunday his fever climbed to 106+ so we headed to a different Emergency Room at a renowned Children’s Hospital. $100
When we returned home his fever returned at 103.5 so we headed back to the pediatrician. $20
February meds for the month: $30

In March we all caught the plague.  We all headed to the doctors office  $60
March meds for the month: $42 (including antibiotics for all of us)

In April Bear had his appointments with 3 specialists: $105 and we were sent home with another medication
He spikes a fever, so back to the pediatrician.  They think they see an ear infection so we’re sent on our way with antibiotics.  $20
All the doctors are on vacation and we can’t get back in with the pedi for a follow up, so we head to an Ear Nose Throat Specialist (ENT).  $35
ENT says his ear looks great, but they find fluid in the other one, the tympanogram is flat.  So we return in a week to make sure his ear is clear. $35
April meds for the month: $50

In May we have a 6 month follow-up with another specialist.  $35
May meds for the month: $30

In June we have our specialist appointment that we had to cancel in March because of the plague.  Our insurance only covers the doctor visit and not the counseling half.  $35 for the co-pay and $120 for the counseling portion. 
We also have to pay for the testing that this appointment sent out.  The cost of the test is $5500 and we may have to pay up to 40% of that.
June meds for the month: $30

Bear has a follow up with his physiatrist.  He prescribes us AFO’s and a gait trainer.  $35
Early in July we go get Bear fitted for AFO’s.  We still haven’t seen that bill yet, but I’ll post about them below.
Late July he spikes another fever and we head to the pediatrician.  He sort of has a minor rash so they say to wait and see.  $20 
July meds for the month: $30

August 11 Bear spikes another fever.  We choose not to head to the pediatrician.  His fever disappears after 2 days.  We head to a 6 month follow up with a specialist. $35
August 22 we have another 6 month follow up with a specialist $35
August 28 Bear spikes ANOTHER fever.  We head to the pediatrician. $20
Over the weekend it spikes to 105+ and he is constantly screaming, they draw blood and do a urinalysis and administer Motrin. $100 + coinsurance for the labs.
He is still screaming after his fever breaks (4 days) and we take him back to the pediatrician. $20 (this is technically September) 
August meds for the month: $30

Now we’re scheduled to meet with the immunologist on Wednesday.  That will be another $35.  Add to this the amount we pay in gas.  Each specialist is about a 40 mile drive each way.  We used to be able to schedule them all on the same day, however, they’re all assigning different wait times between appointments.  Each time Bear has a fever we go through about 2 bottles of Motrin and 1 bottle of Tylenol.  He is intolerant to corn syrup so we have to buy the expensive brands.

Now onto the AFO’s.  AFO is an acronym for an ankle-foot-orthotic.  Basically they’re ankle braces.  Some children with low-tone need them to stabilize the ankle.  Bear needs them because of his high tone.  His toes are always pointed downwards and his heel cord is in danger of shortening.  These make it so he cannot point his toes downward.  He must wear them all waking hours.  The fun thing, you get to pick cool patterns.  His are cars, planes and trucks.  However, because his are so little there are very few whole pictures.

His AFO’s are custom made.  We went in once and they casted his feet and then they formed the material around them.  The second time they check the fit and send you on your way.

I didn’t realize how expensive they are.  $1740. 

Thank goodness for insurance.  Our coinsurance is $293.

So there you have an estimate of our extra medical costs in 2011 alone.  Don’t forget, there are still well-visits, immunizations, Hubs’ and I’s physicals, and other things that are trivial.   These are only the amounts that we have to pay.  The amount insurance has had to pay is astronomical.

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Extreme Exhaustion

Ugh.  Bear is sick as I mentioned before.

Since Friday night he has been up ALL night.  SCREAMING.  It seems to be getting better.  However, I’m beat.

I got up at 5AM (after having gone to bed at 1AM.  How come when you have to get up you can never fall asleep?) and rocked him.  We laid together in the recliner and watched the early morning news. 

And about every 10 minutes they rotated through and kept repeating that there was no traffic on the highways.  Who woulda thunk? Finally at 8 I dozed on and off until about 8:45 when Bear started thrashing and crying.

We were up for the day.  He’s been doing much better today, eating an entire container of baby food and almost a whole yogurt.  For the past week he’s only managed half a container of food. He’s just irritable now, hopefully the writhing and thrashing and screaming has passed.

But this makes for a very tired Mama.

No frugalness here.  No craftiness either.  Hopefully I have more to contribute as I catch up on sleep.

Oh and showering.

When did tomorrow become last week?

I can’t even say that tomorrow became yesterday because time is flying so fast.   We had house guests this past weekend and we spent some time down in Amish Country.

Mama got a new toy!  I’ve had a garage sale drying rack that I took to college with me (in 2002, and it wasn’t new then) that’s been slowly falling apart.  The plastic has dry-rotted, the legs are bent and it wobbles like crazy!  These were on special for July and we got an extra 10% off…Now I wish we had gotten 2!

Life goes so quickly lately.  Between working and therapy and the beautiful weather it seems like before I know it, it’s Monday again.

We’ve got a little Bear trying to be mobile.  His new “trick” is rolling himself up in the blanket he’s laying on and scooting/wiggling across the floor. 

Now that someone (named Bear) is finally starting to get eating (we’re on thick purees now) I’ve given up buying baby food.  I used to just buy it, he would only go through a jar or two a week and I really didn’t have the energy to make it.  Now he goes through 2-4 jars A DAY so I hated all the waste.  We went to our local grocery store and I got ripe bananas (on the last chance cart) for $0.39/lb!  I also bought him some sweet potatoes and carrots.  My biggest task is going to be getting him to try new foods.  So far MOST fruits are a go, while anything green must be poison.

Bear has adjusted well to working.  I think he naps better there than at home.  Yesterday, I baked 4 loaves of break and oatmeal chocolate chip cookies (if you’re wondering, Yes, I’m still gluten-free) which was such a learning experience.  I have never kneaded bread by hand, and I haven’t made cookies without the use of a KitchenAid mixer in more than 5 years, so it was a great workout!  I received the stamp of approval and was pleased that all my effort didn’t have to go into the trash.

After days of 100* weather and higher (with the heat index, humidity was in the upper 70%) the Lord has indeed promised good.  I was treated to this beautiful sky while hanging laundry out earlier.


I was listening to the radio the other day and Gary Allan’s “Life Ain’t Always Beautiful” came on.  And while it usually has me clenching my teeth at the use of “ain’t” and changing the channel as fast as I can, this time I listened.

Life ain't always beautiful
Sometimes it's just plain hard
Life can knock you down, it can break your heart
Life ain't always beautiful
You think you're on your way
And it's just a dead end road at the end of the day
But the struggles makes you stronger
And the changes make you wise
And happiness has its own way of takin' it sweet time

And I cried.  Writing it now brings a tear to my eye.  Because for me some of the most beautiful moments in my life has been the hardest, the most gut-wrenching.  I brought a beautiful baby boy into this world and he was ripped apart from me.  We were about to go home and the next thing we know we’re rushing to a NICU. 

There were days I thought of adoption because he screamed so much.  I thought that surely it meant I was a horrible, horrible mother and that someone else could be doing a much better job for him.  Then I was reassured by lots and lots of other (multiple time) parents that some babies cry no matter what we try to do for them.  And now I have this beautiful HAPPY baby boy.  The happiness took it’s own 9 months to grow, but man did it deliver.  I have struggled with becoming a mother, I have struggled with my own accomplishments and my own abilities.  I have changed my WHOLE life for one little boy.  And at the end of the day?  I’m happier.  Happier than I ever dreamed was possible.

I pray that everyone in the midst of whatever their personal struggles be, can hold onto hope that happiness WILL come.

Fun, Fun, Fun

I'm becoming a lot more okay with this whole working thing.  I think it was just so shocking to my decision to stay at home that I needed time to adjust.  With that being said, we're struggling with finding the time for therapy and doctor's so I may go down to 2 or 2.5 days/week.

I got a lot of negative feedback for my choice.  My son is 13 months old and he is physically and cognitively delayed.  He plays at about the skills of a 6-9 month old.  He can push up on all fours and roll over, but he cannot sit up, crawl, pull up to stand, stand, or cruise.  He likes to play with objects that spin or make noise and his exersaucer (speaking of which, does anyone have that peapod fold up stander? is it worth it?). 

I get Bear up around 8/8:30 and he has his medicine which has to be taken on an empty stomach.  We get in the car and drive the 20 minutes down to this woman's house.  I have the back room set up for Bear to nap.  When we get there, I buckle him into his infant-toddler rocker and he plays with the toys while I pop up his pack n play and get his toys in there.  Then I come and set blankets up on the floor and set out toys.  Bear has his breakfast in the rocker and then a diaper change and a bottle.  Then he and I play on the floor. 

The woman I care for is on hospice.  She keeps having strokes and the doctors have agreed that there will be no more treatment just management.  However, she has plenty of good days where she is very cognitively alert and basically just enjoys watching Bear.  She asks lots of questions about him and asks to hold him (she lays back in a recliner so I just tuck him in the corner).  If she says she has to go the bathroom I buckle Bear in his rocker and help her in her wheelchair.  I help her stand up in the bathroom and sit back down in the wheelchair, then I push her back and help her back into her chair.  Basically, she has some dementia and at times forgets she cannot walk so she will stand up and fall.  Hence, the need of supervision.  Around 11:30 I make a quick lunch, help her into the wheelchair, push her to the table.  After lunch I push her back and help her into the chair.  She dozes on and off all day.

At some point Bear decides he wants to nap. The first day it was 1:30 PM, the second day is 1PM, and the 3rd day it was 12PM. If we're eating I just leave her in the wheelchair at the table, put him in his pack and play, turn on the sound machine and his toys and leave.  Or I wait till after she's back in her chair. 

Bear usually naps until 3 (or later) so I mop the floors, wash dishes, change bed linens, etc.  The other day I cooked a supper and cake to leave for the husband to prepare when he got home.  Basically, I just keep busy.  Sometimes I take breaks while the floors are drying and we talk, or I read a book, knit, etc.  And when Bear wakes we head home.  Sometimes I end up staying till 3:30 to let Bear sleep a bit more.  So there is very little time that Bear is strapped down and probably gets more one-on-one time with me because the lack of other toys or things to do.

So far I'm enjoying it and feel like I'm really helping the family.  It's not a forever position, as hospice is only used for people with terminal diagnoses.  And it can't be more than 20hours/week or the grant from hospice won't cover my paycheck.

We'll see how my second week goes.  My biggest problem is my piece-of-junk crockpot that shut off on Monday, and the huge thunderstorm that blew through after I decided that my laundry should hang out on the line all day.

Just when you think you're starting to climb out the other side

Grief comes back in full swing.
I KNOW it takes a while but with this new round of genetic testing the reality of the situation is very scary.
They're testing for a lot of very scary disorders.  By very scary, I mean fatal. 

The worst part?

Results can take up to 4 months.  4 months?! Yes, 4 months.  4 months of not focusing on my little guy who could be very sick, but instead focusing on my little guy who is moving mountains.  He's rolling with enthusiasm and has figured out how to move on his back by shimming and pushing with his feet.  Granted, it's not the RIGHT way, but it's something.

I feel like I have two file cabinets in my brain.  One filled of all the information I learned PRE-Bear.  Calculus, Statistics, Statics, Machine Design, PLC, Thermodynamics (I majored in engineering), how long to cook a chicken, best way to clean a microwave, etc.

Then there is filing cabinet #2.  It's one of those big monstrous ugly gray office ones.  Not the pretty wood, blend into your decor ones.  And it's filled with files of Bear. Microcephaly, Sandifer's Syndrome, hypertonia, hyperreflexia, GERD, Failure to Thrive, Lumbar Puncture, Neurotransmitter Diseases, Lysosomal Enzyme Screens, Metabolic Disorders, Mitochondrial Disorders, X-Linked Genetic Disorder, Prevacid (generic Lansoprazole), Baclofen, Valium (generic Diazepam), Propofol, Versed, MRI's, CT Scans, unknown etiology, NICU, and the list goes on.

These aren't files that I ever thought I would need.

And ya know what that bottom drawer is filled with?
One file folder.  Labeled : Fatal Disorders.  And you know what's in that file folder?  NOTHING.
Because I can't imagine my life without my son.  I can't imagine the moment of receiving that diagnosis.  Heck I can't even type it without tears rolling down my cheeks much less actually think or learn about it.

I have a rare genetic orthopaedic disorder.  I've known about it for 4.5 years now (despite having it my whole life) and I can still barely grasp the concept.  Thinking that my little guy may not be permanently mine is just unbearable.

It makes me want to pack him up and run.  Run somewhere safe, somewhere that I can't be reached.  Because, surely, if you cannot receive test results then they don't exist.

You'd find us here, marveling at the view. 

Life has given me lemons.  I'm not quite sure I'm able to make lemonade just yet.  I might need to find some raspberries.  Mmmm...then I'd be able to make raspberry lemonade.

Denial.

My little baby boy is turning 1 in 1 week. This surely cannot be true.  I cannot believe that we survived this first year.  I cannot believe what it has turned into.  I cannot believe the human capability for love.  I mean, I love my husband, but I cannot even begin to express the love I have for my son.  It is extraordinary.

Speaking of little boys, there is one in this house that I thought fell back to sleep just now.  I turn on the video monitor and what do I see?  Him playing with the stuffed toys we have in there so he stops banging his head into the crib rails. Apparently, they are much more fun than sleeping.

We have a semi-crazy week here.  More therapy in an hour and then cleaning.  We have a graduation party this weekend, and then guests will  start arriving for the week.  Today is our last day of therapy until the 9th.  I planned it this way because of having house guests and his party, then a major doctors appointment, I felt we just needed a break.

Where did this little baby go?  There's no way this was almost a YEAR ago.  This was his second day in the NICU.

Today isn't a total bust.

It was pouring out this morning as we had a huge thunderstorm pass through. But it's now sunny out while we wait for the next round of storms. It seems that we're in the hole of it, some people around us are getting nailed.

I've got cloth diapers on the line and a baby napping in the crib.

Wait??!!

A baby napping the crib?

Why, yes, yes I do!!!!

For the past 4 days, Bear has decided that napping in the crib is not a plot against him.

He used to go down after about 30 minutes of rocking for naps and would wake at the 30 minute mark (do babies have internal kitchen timers because you could bake a cake to it. It would then take me 30 minutes, if not more, to settle him down and get him back asleep. And we would start the kitchen timer again and repeat. So if you like math as much as I do, that's 60 minutes of sleep and at least 60 minutes (usually more like 90) of effort to put him to sleep.

Last week at some point he was getting fussier and fussier while being rocked to sleep at night. Hubs was getting frustrated so we said, fine, let's put him in the crib with his soother and seahorse on.  We put him down, gave him kisses, said "Night-Night" and left.  He cried for about 2 minutes.  Sort of.  He would escalate to a cry then immediately quiet down.  He rolled side to side pretty vigorously and gradually began to slow down, as did the fussing.  Finally, he was silent for about 2 minutes and slowly turning his head side to side and the next thing we knew, HE WAS SOUND ASLEEP!

Apparently, he's been trying to tell us that he is done with being rocked to sleep.  So now we rock him for a few minutes to get some snuggles in and then we put him down, give kisses, say "Night-Night" and leave.

I have held him for his naps his entire life.  Probably once or twice a month I would put him in the crib to see if the 30 minute nap monster still lived.  So 4 days ago, I was extremely frustrated.  I was trying to get him to go down and he was wiggling and squirming. When I was patting him and rocking him and jiggling him he started laughing at me.  So I told him "Tough luck Bear.  It's nap time."  I got up, put him in his crib, gave him kisses, said "Night-Night" and walked out.  He proceeded to fall asleep in about 2 minutes WITHOUT A PEEP!  He woke up after 12 minutes, cried for 30 seconds and fell back to sleep for an hour.  He then woke up, I gave him a paci and he slept for another 1.5 hours.

Naps have been going well since then, he's better rested and I'm not so touched out at the end of the day.

I can do my chores (blogging) while he naps and we're all happier!

Well that was frustrating...

Blogger deleted all posts made after Wednesday!!!

So my frugal instincts have been having a detrimental effect on my wallet.

Bear is chronically "irritated".  His muscle tone is so tight that he kind of exists on his last nerve for much of the time.  And while he is on medicine to combat it, it's not 100% effective.  Add this irritation to teething and we're in a fussy nightmare. 

So I've been looking into amber teething necklaces and THANKFULLY!!! Bear is only getting his FIRST tooth now so I've had time.

BabyHalfOff had InspiredbyFinn Amber Teething Necklaces on sale for, yep you guessed it, 50% off!
So we're now on the bandwagon.

Tomorrow we have a baby sitter coming (who so graciously volunteered last month) so that Hubs and I can get some work done on the house, for Bear's 1st birthday, in the yard, and run some errands. 

This means I'm on with my own Clean Up Smackdown!

Okay last time I emptied the dishwasher while Bear played on the floor.  Can I empty the dishwasher and dish rack this time?!  And go!!!

Yes I know, I have a sitter coming, so I can clean.  But, I want it to seem like I'm I've got this whole Stay At Home Mom thing down not near as messy as I really am.

I'm just one of those people that falls in the category of last minute inspired procrastinator.  I'm trying to change my ways.  I have cleaning schedules, and home organization guides, etc and for some reason I always choose Bear over schedules.

My home is not DIRTY.  I never let it get that far, but there is usually a pile of clean laundry folded in the living room, dirty bottes on the table waiting to get rinsed for the dishwasher, an unmade bed, and some cat food spilled over the bowl.

What usually happens is it stays this way for a few days week, until I finally get so sick of it that I make Hubs watch Bear for an hour while I do my Clean Up Smackdown.

Today it was supposed to happen during naptime (which is going on currently), however, I forgot to turn on his sound machine.  So I can't clean up much without making noise and waking my baby.

Or I'm just using this as an excuse to sit on my butt and blog and watch terrible afternoon TV.

Or both.......

Cloth Diapers Begets

Cloth Wipes.

Thankfully, 90% of our diapers and wipes have been gifts.  My mother is extremely generous and has bought us boxes upon boxes of diapers and wipes.  However, we're down to our last few packs and I've decided to start making our wipes.

I have yards of flannel left over from a project.  Embarrassingly enough, that project was 3 years ago.  Since I haven't used it up, or used it again for that matter I figured I couldn't screw it up.

I cut out 8x8 squares of flannel and used my zigzag stitch around the edges.  This is time when a serger could really come in handy.

I then rocked a soak with Rockin Green or Eco Friendly Family cloth diaper detergent.  This is cheap flannel from Joann's and it repels water like crazy.  So in order to get the chemicals and soften it up I soaked them for about 4-6 hours and some overnight (uhmm overnight MAY have been accidental because I forgot about them).  Then I just washed them with my next load of diapers.

I used an empty wipes box and folded them so they would pop up using this tutorial. 

I do not pour my wipes solution into the case.  I just put it in a spray bottle and spritz as needed.  I usually spray half the wipe, wash Bear's rear and then use the dry half the dry him off well.

Wipe solution:
I'm currently using wipes cubes I got for free as part of the promotion at the Great Cloth Diaper Change.  I love the way it smells, you simply add one cube to 2 cups of water.

But I'm way too cheap to keep buying them. So once it runs out I'll have to investigate.  Probably just water, baby soap and some olive oil.

Happy Mother's Day!!!

It's sunny out for once and it's a beautiful morning!

I'm so grateful to the one person in the entire world who was able to make me a Mama!

I'm also grateful to my husband.  Without him, there would be no Bear.

Love is wonderful!

Sometimes special needs

bites your wallet in the butt!

I posted recently about my new diapers.  Well I've had to sell them all. The Thirsties diaper covers fit very well over the hips, too well for Bear.  He is so stiff that the pressure from the diaper makes him unable to move his hips.  I tried BumGenius and all was well. 

Bear has thwarted my plans, however I did manage to sell all 3 Duo Wraps and 2 Duo Diapers.  I'm also selling my Beco because we can't use that either.

This week is an off week.  We had therapy and 9 month vaccines today (over 2 months late) so I planned an easy rest of the week.  It's hard to do therapy when his thighs are sore so these were the last appointments for us until the 10th.

Speaking of 9 month vaccines I have Bear's stats.
He's 11 months old and weighs 19lb 1oz.  He is 28 in long.  So he's in about 25-30% for height and weight.  Which is so funny, because everyone including his doctors always remark about how big he is, "He's huge!!!' is a common remark. But he really isn't.  I think it's because we struggled so much when he was little that all of a sudden he seems to be growing well.

I think the poor medical assistant feels bad telling me how small his head is though. She always measures Bears head circumference and NEVER tells me how big it is or if it's on the growth chart, but she gets all vocal and animated about his height and weight.

Last month his head was in the 2-5% category which is holding steady.  According to the geneticist in the NICU this isn't worrisome.  He felt his head was small from molding at birth and as long as it grew on the curve it was fine.

Bear is rocking up on all fours and reaching for toys with intensity that I have never seen.  We still struggle with solids on a daily basis and moving his limbs independently.  He is the toughest little guy I have ever seen, you should see him in his walker at therapy!

Bear - Finally Home and the Future

The one thing that has saved me when wading through the special needs mud, is that I just want him to be happy. If he need me forever, then at least I'll make him happy.

But then, no matter what I did, he didn't stop screaming. I felt like a failure as a mother. He screamed all night, he screamed all day. He screamed if I rocked him, if I put him in the carseat, if I wore him, if I put him in a stroller, if I held him, if I put him in the swing, no matter what I did. Literally.

People who have never had a colicky baby really can't even begin to imagine the mental game this is. It's not just a baby that cries. It is a baby that screams with blood-curdling volume, that makes your soul shatter. You are this baby's mother. They're supposed to know you. To calm with your voice, to snuggle into that crook in your arm.

And there you are, snuggling your baby and they're screaming. Screaming like you are murdering them with your touch.

I heard the words "postpartum depression" thrown out a lot. I really don't believe I had/have that. Because the days that my son had that were good, the moments when he smiled for the first time, when he rolled over the first time, I loved him enough that I could cry. I felt bonded to my child from the moment I met him. However, when your ears are ringing for the few hours a day he isn't screaming, it is literal torture. I did have angry thoughts. I never wanted to harm him (AND I NEVER DID) but I would pray and pray that he would stop screaming. There were plenty of times I had to lay him in his crib and go in the car (the only place I couldn't hear him) and cry my eyes out. I would bring the monitor and put it on mute.

The guilt, that I did something to cause this was unbelievable.  We had a few hospitalizations, hernias and failure to thrive, and we had an enormous amount of tests done. Watching them, poke, draw blood, give shots, and sedate my little baby was so difficult.  I then felt guilty that whatever I did was causing him to need all this testing.

On top of all this, he didn't sleep.  Hubs and I slept in shifts.  One of us would sleep in bed, while the other held Bear in the living room.  He would wake every 30 minutes, wincing, writhing in pain, screaming.  We would pat him, rock him, bounce him and walk with him.  Then after 5 hours we would switch. 

Finally around 5 months the screaming improved.  We finally stopped giving him the formula the doctors demanded he needed and the nighttime sleep improved.  We followed Ferber's recommendation for amount of sleep and his nighttime sleep improved.  He would wake about every 1-3 hours. 

Around 8 months the screaming had subsided.  He is still easily frustrated and very demanding, but better.  He has bad days however they're few and far apart.  He still has testing, undergoes a sedated lumbar puncture, had therapy, follow up appointments, and we finally get a new medicine.

The first night he was given it, he slept in 4 hour increments.  The next week, woke 1 time all night.
Heaven in a bottle.  At the end of the first month we ran out before we could refill it, and he was back up every hour.  They can pry this medicine out of my cold dead hands.  I will never give it up.

They still don't know what's going on with Bear.  He will have another MRI in a few months.  His motor skills are severely delayed.  However, cognitively he is all there.  He laughs, he yells, he blows raspberries.  He has favorite toys, he has toys he's afraid of. 

But most importantly, he seems happy.  He has this adorable smile, with a humongous dimple in his right cheek, and this silly laugh.  It literally melts my heart to hear it.

The guilt is still there, though I'm slowly climbing out of it.  My biggest regret is not advocating for my son's needs effectively.  I would request different nurses, different tests, different procedures.  But that's in the past, and I cannot change it.  I can simply learn from it.  That doesn't mean my anger over the situation has resolved, it simply means my anger with myself is resolving.

So instead, I focus on the future.  Bear has a Guinness Book of Records attempt in his baby book and it's just the start.

My little guy is going to move mountains.  Just you wait and see.

Bear - The NICU

We stayed in that NICU for a long 9 days.  I know mom's of preemies were in for hundreds of days are going to balk at the "long 9 days" portion.  However, we were surrounded by babies that were 1/4 the size of Bear (he was 9lbs) that were much sicker.  Bear never had a seizure that they ever saw.  He just didn't know how to eat.  Because of his low level of need, we were stuck in a corner.  We were pretty much left unattended unless some new nurse decided she needed to demand her expertise, which was highly uninformed.

We felt out of place in an area with babies that needed so much attention, mom's who couldn't even hold their babies.  In the beginning the neonatologists just kept saying this was the result of a traumatic birth.  It would improve.  Then he had microcephaly and could be severely delayed.  Then he had a brain injury.  Then it was that I did recreational drugs, despite my adamant responses  that I hadn't even been near a drug.  Then it was a genetic disorder.  Then it was an in utero infection.

Add this rollercoaster of emotion to the postpartum hormones and you would find me.  The twenty minute ride home every day I would burst into tears.  I would hand my baby back to a nurse that I just saw ignoring a crying baby for twenty minutes so she could check her email.  Then I would get home, pump in an empty nursery, see my empty carseat, and go to bed with just my husband.  I never felt more split apart.

I had an enormous amount of guilt.  As mothers our first instinct is to feel guilty.  When our child is sick, we feel guilty that we cannot make them feel better, when our child gets hurt we feel guilty that we cannot heal them and remove the sting. 

My son was in a NICU all alone and I felt guilty I couldn't be there 24 hours a day.  I believe every NICU mom feels this.  Add to that, I could have done this to my son.  I could have done something during pregnancy that damaged his brain.  Was is that warm bath?  Did I have an infection I didn't know about? Was it those 2 sips of wine I had?  What if God gave me a perfect baby and I did something selfish and ruined it?

The what if's could eat me alive, and they still could if I let them. 

Finally on day 12 of his life we were finally allowed to bring our baby home.  However, I didn't bring home a newborn, I brought home a baby who learned a schedule in the NICU, wasn't sleepy all day, and screamed nonstop.

Bear - The Beginning

In honor of my first Mother's Day coming up, I am sharing the story of my son's entry into the world and the events that shortly followed.

I was induced just after 39 weeks because of elevated blood pressure and uric acid.  And because he was estimated to be large.
My induction was successful however I had a great deal of difficult pushing his shoulders out.  He had severe shoulder dystocia and was extremely bruised and stiff after birth.  He couldn't figure breastfeeding out, was super tired, and never cried.  The nurse kept giving him Tylenol because he was probably in pain.  I am still angry with my delivery experience for this.  For not advocating for my son that he be examined IMMEDIATELY.  I waited.  I had a nurse tell me "he just wasn't hungry".  I had another nurse tell me "It's normal for babies not to cry".  Then the 2nd night he came undone, he screamed every 45 minutes, would take about 1-2mL of formula, pass out and repeat.  We begged for help and none came, instead we were told we were "paranoid first time parents".

At 11AM the next day a pediatrician came to take Bear for his discharge exam.  She came back noting the nursery had gotten him to take 2/3 of an oz of formula, which he then immediately vomited all over her.  She said he had red flags, and was extremely stiff, he was seizing and needed to go the NICU before he stopped breathing.  I held him in the nursery till the NICU staff came.  The loaded him in an isolette on a gurney, wheeled him in my room to say good-bye. 

It was shocking. 

It the course of an hour I went from about to leave with my newborn to go home, to leaving with an empty carseat praying my son kept breathing long enough to get to the NICU.  Hubs and I headed home, it was on the way to the 2nd hospital, to get clothes, a snack, and anything else we would need.

We then headed to the NICU where we were informed we would not be allowed to see Bear.  We waited about 2 hours before we were allowed in.  He as asleep in an isolette, with the nurse who transported him watching over him.  He had an IV in his head and when she handed him over to me it took everything in my body not to break down and cry.