Thursday, September 27, 2012

Hoarding Spoons

These have been the most turbulent three weeks ever. It's like suddenly one day someone flipped a switch and the meds stopped working again. For some people, I think that giving their kids meds is lazy. I resisted for a long time. But now I know that meds are the only way BW has a chance at anything resembling normal. He screams, and fights. Not like any NT kid who just wants to get his way. We've had such violence here that I've never seen before. He's hurting people, and not just the ones his size and smaller. He's so strong now! He even gave his therapist a bloody lip one day.

Last week we tried a new med, and after adjusting times and diseases, things seem to be calming down. The med is scary, and it freaks me out that its actually working on him. He's almost back to 'his' normal now. I think a little more time and tweaking will do the trick. It hurts my heart to know that my 7 year old is doing well on strong antipsychotics, but that's for me to deal with, not him.
I've had to pick him up early from school many many times in the past few weeks. The last time being yesterday. I went to the next county to pick up prescriptions from his doctor, then got back to our hometown and went to the pharmacy to fill one. They said 20 minutes, so Little and I cruised around the store for a little bit. She decided she needed to potty, so in we went. As I walked her into the restroom, the school called. He was boiling up to nuclear meltdown time, and they knew putting him on the bus at the end of the day wouldn't be good or safe for anyone. So Little and I packed up and headed to school. (We didn't even reach the school before I got a text saying the Rx was ready at the pharmacy. Sigh.)

When we got there he was doing "just okay." I signed him out and the principal walked us out to the car,while I apologized for the trouble, like usual. On the way out to the car, his shouting and whining and growling stopped. He stopped dead in his tracks. (oh boy, here it comes, right in the school bus lane.) He kicked off a shoe. (Crap.) He tried to steal the principal's umbrella. (Why couldn't I have kept his in the car?) He looked at me and started growling again. Then I saw the strangest thing. He picked up his show and dumped out a plastic cafeteria spoon, bent in half. (WHAT??) I asked if that was his problem and he held up his palm, and calmly said "yeah, I'm good now."

I wish he would have just told someone that his foot was uncomfortable, instead of this huge process. It was true though. As soon as the spoon came out, he was fine. He wanted to wait until he was outside the building before admitting the spoon was there, so it wouldn't get taken away. So bizarre.

Then he insisted on washing the spoon and eating his dinner with it. What in the world? (Ok, so I'm the one who insisted it get washed.)

Tell me about some simple things that have turned into a huge fiasco in your corner is Special Needs Land ;)

Sunday, April 15, 2012

Why does my kid keep getting strange illnesses that kill the Pioneers on the Oregon Trail game?

Quite the series of events has unfolded this past week.  I’ll save you the details on the stuff that isn’t autism-related (unless you really want to know), and just get on with BW’s stuff…

We went to the surgical consult at Riley Hospital for Children with the ENT doc, and he said that BW doesn’t meet the criteria for recommendation for tonsil and adenoid removal (I know I touched on this in my last post...)  This concerned me, not that I really want for him to have surgery, but because he gets sick SO. OFTEN.  And because on any given day of the year, if you look in his mouth you can see these giant, ping-pong ball size tonsils just sitting there blocking his airway.  He gags on his food, and he stops breathing at night. This freaks both him and me out.  So we were referred to the sleep study team.  Whomp-whomp.  Nothing there either.  So two  weeks go by and here we are, BW is sick again.  It’s so hard to tell sometimes with him if there aren’t any visible symptoms.  He won’t tell you when his throat hurts, you have to just listen for smurfiness in his voice.  He won’t tell you when he has a head ache, he will just scream and terrorize the entire household (including hurting his sister on her head).  He doesn’t tell you when his stomach hurts, he will just look you in the eye and then throw up on the white carpet.  He doesn’t tell you when his sinuses are clogged, but that one is at least easy to identify.

So on Thursday we noticed the stuffy nose.  Friday we noticed the drainage changed colors and his voice got a little crackly.  Saturday during the day he was ok, but he started gagging a lot, from mucus drainage.  So I begin to wonder: Is it seasonal allergies? The farmers nearby have been tilling the fields to prep for planting. That usually brings about some sinus gunk.  Yeah, that’s gotta be it, right?  So we went to the church’s fundraiser, then had some lunch with friends  that afternoon while daddy was working. He started doing the gagging thing and both kids were getting cranky, so we went home.  As the next few hours passed, I started noticing his eyes getting puffy, and his sinus area swelling some.  Time to watch more closely.  He felt cool to the touch, so I didn’t see a reason to take his temp just yet. (He fights it, and it makes for a rough next several hours, even with just the temple scan).  Daddy gets home from work and we watch him closely.  7pm rolls around, and we started seeing big changes, so we decided that it was time to go to UrgentCare. 


UrgentCare, not emergency.

When we got to the office 40 minutes later, I noticed a few red spots on his face.  I filled out the paperwork, and waited to be called back to see the doctor.  15 minutes passed, a very reasonable time frame for a place where we had no appointment.  During that 15 minutes, the few spots turned to huge red blobs with a few little bumps here and there  around his eyes, nose chin and cheeks. 

So the verdict here is:  Although his skin was strangely cool to the touch, his temperature was 103 F. He has an ear infection, sinus infection, and Scarlett Fever (a severe form of strep that resulted in the death of many a Pioneer in the pre-antibiotic days.)  BW had strep in February, again in March, and now the Scarlett Fever.  How does this not make him a good candidate for removal of these bacteria-trapping, always swollen and painful glands that keep him from  sleeping well at night, and keep him sick all day?  (Yes, before I get told-off, I know that for most people the tonsils serve their purpose well and keep people from getting sick, but for some they do the opposite.) 

On a lighter note, when I told my husband the diagnosis, he said “People still get that?”  This has been the same response from just about everyone.. I didn’t realize it was still around either.  But if something is to be found, this little Ninja is apt to find it. Unless it’s something we want him to find, that is. ;)

So now I say again, Why does my kid keep getting strange illnesses that kill the characters on the Oregon Trail game? in elementary school? (you know, on the old IBM computers with the giant game disks?)  I’d better watch letting my daughter play outside.  She is 3 years old and weighs 27 pounds.  She might get carried off by a hawk or bald eagle or something.        {O_0} 

Wednesday, April 4, 2012

Adapting, and Trying to Find Answers

[NOTE: This was posted a day after it was written, because I dozed off while typing..]

This year has definitely had its ups and downs.

In January BW spent six days in Methodist hospital in the C1 unit.  This was SO hard for all of us.  Hard on him being there, not able to come home, hard on us as parents in so many ways we can't even list them all, and hard on extended family because they took turns caring for our younger daughter, who wasn't allowed on the unit.  We drove over an hour each way to see him every day, and although we got there in the morning and most of the day, they said it wasn't enough.  They wanted both of us to be there for his every waking moment, and just watch us parent him.  It was hectic all around, and we couldn't do it as long as they wanted us to.  We understand that we need to be there, we do.  We WANT to be there.  But we both have jobs that we weren't able to go to, and a daughter who needed us.  And our families were being bothered by watching her.  And a dog.  He was released early from C1, and we were put on a waiting list for in-home behavioral therapy.  I have called and called, and I'm not getting any answers as to when a place might open for him.  The only place who offers in-home visits from the therapist doesn't return my calls, and passes me another number within the company every time.  But I keep trying, because I keep hearing that once you finally get in, it's the greatest thing since sliced bread.

He has had some progress since The January Incident (by the way, after insurance paid their part, our share is over $11,000), but I think getting back into the school routine has helped tremendously.  He even had great notes in his communication book the last two days before spring break.  Yes, the dreaded no-routine, again hectic time when there's no school and still no day care in town will (or "can") take him during these school breaks to give him some sort of structure..   He always seems to regress and take forever to recover from school breaks, but when he went back this Monday, I got another good note.  This is progress, people!

February brought strep throat and an otic infection for both of us.  Twice for him...  This led to this Tuesday's visit to the ENT specialist at Riley Hospital for Children in Indianapolis.  Concerns of mine were frequent strep, and sleep apnea, shouting out in his sleep, thrashing, and getting out of bed every night.  This was supposed to be his second day back to school since spring break, and he missed it for this appointment.  Another break in routine.  He did fine here today, so this means he is adapting.  This is yet another good thing.

Did you notice I said "here," and not "there?"  That means that we are still at Riley, and it's just after 3:30am on Wednesday.  The ENT specialist said there was a need for an immediate sleep study.  So as I type this, BW is snoring away in a bed a few feet away.  He likes going to the doctor sometimes, and today was no exception.  He smiled all the way here (an hour drive), and we talked about Mommy and BW having a sleepover together at the hospital.  When we got here, he was ready for bed, very sleepy.  Awesome, right?  Not quite.  He got scared when he was told that we needed to put some "stickers" on him in certain places before he could go to bed.  We started out by showing him the sticky pads without the wires attached.  This went ok-ish.  We took a little break, then she opened the cabinet and pulled out the wires that would be attached.  He instantly started gagging, then vomited all over himself when he saw the wires (from nerves and fear).  He freaked out when he saw them because he said he didn't want to be a robot.

By the time it was all connected, he looked like a Borg drone, and I felt so bad for him because he was SUPER scared the whole time.  We stopped several times to let him regain composure, pray for calm, and once to call Daddy we could do bedtime prayer together on speakerphone.  It did calm him for about 2 minutes, then panic mode struck again as more "stickers" and electrodes were attached.  He didn't like the head wires. (who would?)  He told the technician that putting "toothpaste" in his hair was gross and he didn't want it.  So we had to do a lot of convincing to get the rest accomplishied, but it happened.  I got him cleaned out of his vomit clothes, and gave them to the front desk to wash.  I laid down in the bed next to him until he fell asleep with his entire head wrapped and taped to keep all the wires from detaching.

Update to come. It's 3am and I'm signing out for the night.

Sunday, March 11, 2012

Quality Time

My husband took a couple of hours off work Thursday and went to Dad's Doughnut Day at school with BW. According to BW, they ate doughnuts, sang the "I love my Daddy" song (which neither of us knew about), and played a board game called Green Eggs and Ham. That would have been the highlight of his entire week, but then he spent Friday night with Meemaw and Saturday night with his Aunt and cousins.... This is very good for him. He doesn't get much time away from home other than school. He hasn't stopped talking about the game and doughnuts with Daddy, and all the things that happened during the sleepovers. He needs so much more time like this, it just seems hard to find someone willing to give that extra time to him. We're not trying to get time away from him, but the boy needs more interaction with family and friends. It's good hearing him talk about these things, he keeps going on and on! When he came home, he SHOUTED "Mom! I came back!!" ..like he was concerned that I thought he wasn't going to come home. ♥ my boy. I just wish everyone saw the sweet sweet brilliant kid that lives inside the shell of anxiety and behaviors that is seen in public. Did I mention that I love him?

Sunday, January 15, 2012

I heart that glorious time between 9-4 or 5.

BW has been so calm and polite and compliant lately... From the hours of 9-4 or 5. The new meds are making things so much easier for him to concentrate and sort things out. He is speaking in full sentences when reminded to, and is learning to be more patient. Not completely patient, but more patient... Between the hours of 9-4 or 5. Besides those hours, it is total chaos here. Resume the screaming, obsessing, violence and nuclear meltdowns over trivial things. This combo is brilliant, but there is a definite line that gets crossed the very minute they wear off. (no, when the meds are in effect, he doesn't seemed "doped up," and it is for his benefit, not just our convenience.). Just a peek into how our days have gone lately. People at church the last couple of weeks have been encouraging in saying they have noticed big changes the past couple of weeks. (some of them know about "the big break" and others don't.) I've been in love with the new "coctail" he's on, but only between the hours of 9-4 or 5.

As for me? My nerves are still a wreck, and any prayers would be greatly appreciated for our whole spectrum family. Because really, when there's someone in the house on the Spectrum, everyone is affected. Keep BW, sister, Mom amd Dad in your thoughts please, as doors continue to open for us.

Wednesday, January 11, 2012

The Dentist, Sedation and Mommy not being present.

BW has a sedation dentist appointment tomorrow morning.  No major work done, but he has to be sedated in order for the dentist to come out of this with his fingers intact, and for BW's nerves to not be fried.  They are doing a cleaning, and considering sealants for the back teeth since he is a grinder.  I told them if there are any cavities that need work, to just do all they safely can while we are in there. I'm somewhat ashamed to admit that this is his first dental exam,  but at least I'm taking him now, right? I was told at the consultation that his teeth seem healthy and they don't anticipate any issues.  The boy jad better have healthy teeth, he didn't even jave any until he was about 10 months old!  

The bad part? Mommy can't be there for the appointment. He will be in the capable hands of his Daddy while I drive my grandpa to have a medical procedure out of town. 

Sunday, January 1, 2012

NYE

Given the incredible stress that BW had over the past couple of weeks due to a bad med change and breaks in routine, we opted to stay home and have two friends visit for NYE. This was a good good decision, and the only thing that got broken today was a plastic cup and set of RCA jacks that came with the new DVD player that got set up a week ago.. one of the pins from the plug got broken off inside the tv when BW yanked it out. But all in all, he had a good day. He even said Happy New Year to every single dag-blasted person we saw in Walmart this morning, and hugged most of them (while I begged him not to and rolled my eyes as I coaxed him to the next aisle). Normally he just screams in Walmart. I'd call this holiday a success.

.. And by "this morning" I suppose I mean yesterday morning. Since I'm still awake at 5:30am, you could see how I'd make that mistake :/

Thursday, December 15, 2011

Today autism and I are not friends.

Last week we saw doc and we expressed all our concerns about weight gain and increased intensity and duration of 'rage and destruction for no discernable reason' episodes. He decided that as much as we liked the previous med, it appears to be time for a change. So we discussed our options, and carefully (oh so carefully!) weighed the options, benefits, and risks. We were sent home with a titration pack, and did a we were instructed. All week we saw minor improvements in some areas, but he's still got a long way to go before we can say we're comfortable with saying we've got a sufficient replacement. I miss my boy, and today I have to just sit here and say: Sometimes I hate autism so much. I miss my boy, and I want him back. This kid that's here screaming and biting, fighting and spitting, throwing things and hurting his sister- thats not my boy. My boy likes to tease and laugh, play and read. And cuddle. I miss cuddle time when no one is upset or trying to hurt someone else, when we don't have to raise our voice or make threats to get things done. I miss it, and today I hate autism and I'm not ashamed to just put it out there. We even got a note from the teacher today that says she isn't seeing improvements with this med and she also used the phrase 'I want the old back!'

Why can't autism take a vacation and just give me a break sometimes??

Dear Autism, today we are not friends.

Saturday, December 10, 2011

Holidays- Learn As You Go.

The day had its ups and downs. We went to a Christmas party and made it through lunch, then had a few glitches when it was time for the kids to exchange their gifts, but was still "ok." During all the down-time it got difficult, though. A lot of wandering and exploring since it was a house that we generally only see once a year. The house is constantly being renovated, and there are always new walls or floors or other major changes every year, and this confuses BW. He gets agitated and literally wants to touch every surface of the house, and every item in it. There are a lot of people at this party every year (45-50), and with larger groups, there's more people who don't understand, and more anxiety on BW's part. We're getting better at recognizing the signs though, and this time we got our coats on and said our goodbyes, and got all the way to the stairs before the howling ensued and RC had to utilize the fireman's carry. I had our medical equivalent of a fire extinguisher in my purse, but didn't use it. Like I said, we're getting better every time. I won't allow myself to get too confident with that though, because when I do, I get BLINDSIDED by a totally new kind of chaos...

Thursday, December 1, 2011

Christmas Program Success

BW's school had a Christmas program this evening, and I have to say- he did remarkably! The Kindergarten students sang several songs and his teacher and aide were both on the side of the stage within arm's reach- just in case. He did sit down once for about half a song, but for the most part he was VERY good. I don't mind that he didn't sing much, I was just thrilled that we made it through a crowded event without a meltdown until it was time to leave! Of course he was eventually carried out kicking amd screaming across Daddy's shoulders, but HE ENDURED until his songs were over and they were dismissed from stage! He did make up for it later and resume the horrendous screeching and fighting that is so familiar to us.

Unrelated note, I didn't get any good pics or video because of a very rude man standing front and center taking a video of THE ENTIRE PROGRAM with his phone. One mom whispered to him to ask him to kneel down, but he acted like she didnt exist. 5 minutes later during BW's favorite song of the night, I walked the lane and politely informed the man that people behind the fourth row weren't even able to see the stage and asked him to kneel. Of course he ignored me too, but I kept talking. I told him that we wanted to see our kids, and it would be very polite of he would please find a seat near the other parents who were taking pictures. He finally looked at me and showed me his phone in video mode. "But I'm just video recording," on a very thick accent.. I said that was nice to do, but he really needs to kneel like the other parents. I then walked back to my seat, and so did he. After the show the teacher, three aides and several parents thanked me for getting him down. I'm told that this man is incredibly rude in virtually every situation and it was a huge accomplishment. Personally I don't think I said anything rude or even impolite, but I do think he realized that I wasn't going to stop talking over his video recording until he moved ;)

Monday, November 21, 2011

Tonight I watched BW read a book to his younger sister.  My 6 year old, who couldn't speak a full sentence until he turned 5, kept his attention focused long enough to read a book- and to his sister, no less.  He generally has no tolerance for her presence, but for a couple of precious minutes, the boy read a whole book to his sister.  Proud mom? Heck yeah!

He has progressed so much in the past two years.  I have noticed recently though, that he still has the maturity of a 2-3 year old.  He throws tantrums countless times every day, and is getting so strong that I can barely hold him back when he tries to run, bolt, or throw himself down (or whatever other direction he decides).  His mood swings are so violent.  It's hard to take him anywhere because of the mood swings.

We went somewhere (public) today, and while standing just inside the door waiting for my husband to come in, a little girl and her family (whom we had never met) came in the door.  BW gave her a huge hug, and the girl complained the rest of the night about how 'weird' he is.  She kept asking me why he hugged her, why he was watching her play Angry Birds in the booth behind us, why he couldn't sit still and be quiet, why this and why that. 

I'm so tired of answering why when other kids think he's weird.  I'm just glad he doesn't understand yet that some people don't care for him because he's different.  He loves everyone he meets, and if he recognizes you, he calls you his friend and means it very seriously.  It's going to Break. My. Heart. the first time he realizes what it means when a kid calls him weird, or when someone says they don't want him around.  It breaks my heart now, who am I kidding?  The boy has no friends, and it makes me sad.  We don't get invited to things, except for events that the whole church body is invited to, and the occasional holiday with the extended family.  No one really makes any special adjustments for him though.  Events will be held at people's houses that he only sees once a year rather than at grandma's, where he knows the place, and knows his boundaries.  So when we decide that it'll be easier to stay home than to be on constant red alert, they say "see? This is why we just do it here, they never show up anyway." (along with other things relating to not needing to make occomodations)

But we still try.

Because if we don't, no one else will and he'll never get the hang of it.  We put up with the scoffs, the comments,  the stares and stress  because leaving in the middle wouldn't do him any good.  As stressful as it was on all four of us, I'm glad we stayed.  They brought out a pinata for all the kids to take a turn.  BW got to the line somewhere near spot number 5, and by the time it was his turn, about 20 kids had taken their turn and he was somehow last in line, squirming and stimming and moaning and crying out, me holding him from pushing in, being told to be polite and wait our turn by yours truly.  But by golly, when it was his turn he knocked the bumper off that pinata-mobile and soon enough they all were rushing for candy and mini Play Doh tubs.  BW was so proud.  None of the kids really cared who gave the final whack once the goodies started spilling out, but he was so proud.  He had a big open mouthed grin, raised eyebrows, and wide eyes for quite some time during the ride home, and talked about the one thing he will choose to remember about the outing:  "I break open candy for the kids!" 

Thank you Lord, for his innocence and ability to take the one good thing that happened tonight as his memory of the whole evening.  Thank you for making him so smart and amazing, even when others don't see it.  Please help me to stop crying about all the mean things of this world that he doesn't see or seem to notice.  Thank you for giving him that innocence that protects him from these things. 

Tuesday, November 15, 2011

The calm after the storm

Well.  I'm SO glad that full moon week is over.  These days have been full of tantrums, screaming, breaking things, hair-pulling, biting, writing on walls, kicking, defiance, etc.  I haven't had time to think, much less do anything else.  I never believed in any of the mumbo-jumbo about how the moon cycle affects this and that until recently.  Now I can guess the moon cycles just by the boy's mood.  But just as quickly as it comes, it goes.  And when it goes, it's so great. 

Today we had a few great minutes.  When I say great, I mean the cute, adorable, must-squeeze-your-cheeks-right-this-very-second kind of great.  A few minutes after getting home from school, he crawled up on my lap, hugged me tight, and said, "If Benjamin Cofer's happy, then Mommy's happy."  I couldn't help but to just grin and agree.  I squeezed him super tight, and held my boy.  Moments like these just don't happen often, and I wanted it to last.  He sat up and looked me in the eye (!) and said "Mommy, you want rub my shoulders?"  I never know if statements like that mean that he wants me to rub his, or if he's asking if he can rub mine.  Pronouns are troublesome.  Anyway, I said yes, and he put my hands on his shoulders.  I waited for him to do it, because we all know how necessary permission is in these situations.  I lightly massaged his shoulders, and he leaned back in against my chest and sighed.  He then said the greatest words I've heard in a week: 

"Ohh, yeah.  That's the good stuff."  I was at a loss for words at this completely unexpected display of affection.  I just had to bury my face in his hair and enjoy it.   This was the best five minutes of my entire week. 

..until he got up and kicked his sister and threw a toy at the dog.  *sigh*

Wednesday, November 9, 2011

From the top

I've had so many things to share that seem to lengthy for the Spectrum Circle Facebook page to have as a wall post. And of course, now that I'm beginning my journey into bloggerland, I suppose I should start from the beginning? I have a 2 year old NT (neurotypical) daughter and a 6 year old son with PDD-NOS, OCD, ADHD and severe mood disorder.  This one is long, but here's the story of our family's beginning.

When I was 24 I became pregnant with twins. It was rough from the very beginning, with all the usual pregnancy thing. I was having fetal ultrasound checks every two weeks, then when I was five months along, we went to the scheduled Monday appointment, and we found out that twin A (Avery Lane) had died. It was later confirmed that this was a result of atypical Twin-to-twin transfusion syndrome, and Avery became my "big baby" very suddenly and without warning, and his little heart could not keep up with all the extra blood and nutrients he was receiving. Generally it goes the other way, where the 'big baby' will be the survivor.

When I found this out, I immediately went into labor. Just. Like. That. Right there in the doctor's office. The office happened to be located in a hospital, but the pregnancy wasn't far enough along for that. They had to break out the big guns. We were sent to St. Vincent's Women's Center, where I was put on Magnesium and terbutaline to stop these hard contractions. The docs were able to get them curbed. I was still able to feel them, but they weren't as intense, and I wasn't dilating anymore (thank GOD!). I was told that I would remain in the hospital until delivery, and that I had to remain pregnant with twins until twin B (Benjamin William) was delivered. I remember asking the doc, "are you seriously going to make me lay here in this bed for four more months?" He looked at me and said that it would be closer to 4 or 5 days. WHAT? It was too soon. I may have been preparing to be a first time mom, but I knew that 5 months gestation was WAY too early.

The next day, they wheeled me down to the NICU and showed me all the preemie babies. Their motive was to show me that they had the best facility to accomodate all sorts of needs. What actually happened was that I just got really sad, seeing all these tiny tiny babies and their parents, not allowed to touch them. When I got back to my room, they told me that they would do all they could for my baby when it was time, but not to expect to be able to hold him right away if he survives the birth. A pediatric neurologist tried to explain to me that babies born this soon tend to scream when touched, that the slightest breeze or touch to his skin would be excruciating and that he wouldn't likey ever speak or walk.

Well, the four days passed, and I was given a surprise. Instead of heading to the OR to deliver, I was given a terbutaline pump in my leg and sent home. WOW.

So I went home on bed rest, and kept up with the ultrasounds, only now they were EVERY Monday. This continued for about two months, still having about 6 contractions an hour. I got really good at changing the needle, med container and tubing for the terbutaline pump in my leg. Then when I was seven months pregnant, that familiar pain came back. Intense and regular, every 4 minutes. I called the company that watched the monitor that was strapped to my belly 24/7, and they agreed that it was time to go. I called the doctor at around 3am, and we were off. I layed on the bed, changed into the gown, and they determined that Benjamin was in distress and we went straight into the OR. No time to wait for a contraction to stop so I could get my spinal block, oh no.

They had him out within seconds, but wouldn't let me see him. Instead they swaddled Avery and gave him to me. They wouldn't let us get pictures of Benjamin right away, and I didn't hear him cry. The first words when the doctor pulls the baby out are normally "it's a boy! Look Mom and Dad!" Not here. I'll never forget what I heard. "Well THAT'S not a good way to be born." Ohmygosh, what?

Turns out the cord was around his neck, and he had to be revived twice. It was three days before I could hold him for the first time, and I had to pump instead of nursing him. He spend a day under the O2 hood, and had a feeding tube for what seemed like FOREVER. Thankfully though, he was 3 lb 6 oz, which gave him a fighting chance.

To wrap this up, I'll just say that after our stay in the hospital, we brought him home at exactly 4 pounds. Our little miracle, who did NOT scream when touched. Now he just yells a lot for other reasons ;) He looked like a little old man. <3
BW was a week old in this shot.

Please feel free to leave comments, questions and feedback.  I only ask that you be respectful in doing so.  Comments with harsh language will be deleted, otherwise we would LOVE to hear from you!