Wednesday, September 26, 2012

Nothing particularly exciting

Today's been crazy! We've had a great couple of days with Noah's bowels beginning to regulate themselves but then out of no where......

BOOM

that dreaded D-word struck. Oh boy. I need to change the name of my blog to something like "Freeman Poop Blog" or something original and creative like that. I just feel so badly for the little guy. It's so bad that I can hear the "deed" happening from across the whole apartment. I didn't think it'd be possible for such a small person to make such incredibly loud bowel sounds (we have candles lit in every corner..). It's scary because that's a symptom of enterocolitis--Hirschsprung's disease's worst side effect. We are constantly being confined to our humble apartment during all hours of the day for fear of poop oozing out of our eyeballs. No wonder the poor kid can't gain a pound. He's quite skinny these days. I worry about him, but that's my job I guess.

Anyway, nothing new around here other than my amazing hubby has been hard at work finding another source of income for us and he is teaching himself how to make websites. He needed to form a "company" to get clients, so he did this: zen-webs.com.  He did that in 4 hours! He has an account for three websites that he'll be doing--Raintree Apartments (where he's the property manager), Cambridge Court apartments, and Glenwood apartments. He's been doing this for about a year now, and finally feels competent to do other companies' sites. I'm so so so proud of him and he's such a good example to me of being a "life-long learner"--sounds cheesy, but that's a perfect way to describe him. If he doesn't know how to do something that he's interested in, he will sit down and find out everything he can about that thing. All the while, I'm wondering when the next season of Gossip Girl will be on Netflix (now! Season five is there now! Yes!). And I'm a college graduate...and wonder why I feel so unintelligent...

All for now. And again, no pictures because I'm using my MacBook circa 2007 and it sounds like it will blow up at any moment. (Dear Santa, please send me a new computer.)  



Monday, September 17, 2012

Recovery

Those first two weeks. So hard. Poop everywhere. Constantly.

Poor Noah was going to the bathroom literally every 30 minutes during the day, and up to a couple hours at night. Sleep? Never. Not for me, not for Noah and not for Mark. I at least got to nap during the day...Noah would wake himself up constantly, even if he had to pass gas. He was only getting maybe 6 hours a day of sleep. Poor baby! I can only imagine!

Newborn skin and 8 month old's poop don't mix well (diaper rash...) on top of constant pooping. And recovering from having clamps up your bum with stitches lining your rectum. And an open, gaping colostomy hole in your side. And 4 inch incision through your tummy. Poor baby. Life was rough for him! So as you can imagine, anytime he'd go, it was extremely painful. We made sure to follow his pain med schedule religiously...alternating Tylenol and Advil around the clock. After about 8 days post-hospital we didn't have to give him any more. Babies heal so fast--it's incredible.

We had my mom come for two days in a row to watch him while I slept, and then Mark's mom and grandma came two days after that. I don't know what I would have done without them!

We tried a lot of different cremes and pastes for his hiney. We have a system figured out now and so things are so much better! It just took awhile to get there, but we never let the rash get as bad as some of the cases that I've heard (bleeding sores, etc.). We rotate the stuff the hospital gave us, AD treatment creme, and this Resinol stuff that Mark's Grandma's friend used for her babies...so random! We just alternate those three and it has seemed to do the trick! After loading the creme/paste on, we douse it in medicated baby powder (not the super perfumey kind...I hear that's no bueno). That has helped SO MUCH!

He had his two week appointment on Thursday the 13th with his surgeon. Dr. Scaife stuck his finger up Noah's bum and told us that we don't have to do dilations!!!!!!!! HALLELUJAH! Seriously the biggest blessing. I have been stressing about how I'm going to get him to stay still while I put lubed-up rods up his bum every day. And now I don't have to do that. It's the biggest blessing ever.

He did however say that we needed to do rectal washes every day for a month, come see him, and get instructions from there. I was really nervous about those, but we have done them 4 times now and ever since we started those he has gone all night long without pooping! He has been waking up once every night to eat...we will work on that later though. We don't have the heart to re- sleep-train him after all he's been through. He won't sleep in his crib during the day so that's something he needs to get over! Since everything at the hospital he is extremely anxious when we aren't close by and is wary of strangers, especially if they're in scrubs! He's no dummy!

I'd be lying if I said that he's all good now and there's nothing but butterflies and rainbows ahead, but just the fact that the surgery worked, he is now bag-less, and was able to go home so quickly are all miracles in themselves! We have some great days, and some not-so-great days. Today is a not-so-great day. He ate something that really irritated his stomach and has been going to the bathroom every 20 minutes or so today. Because of the frequency, his diaper rash is looking pretty bad today. Those are things that we will learn and figure out along the way.

Thank you for all your continuous support! We are doing so much better than we were--that's progress!

Surgery, part 3

By about 11 a.m. on August 31st (2 days post surgery), Noah had his first bowel movement out of his bum!

We did the poop dance all day long. It was such great news and the medical staff all seemed pleasantly surprised that it happened so quickly. I took a picture of "it", but I will spare you.

From then on out, we were gradually feeding him more and by the next day he was completely off morphine. Once that morphine stopped, his demeanor changed and he was much more happy! We just gave him around the clock Tylenol and Advil. Lortab didn't do so well in him--it all ended up on the floor in large amounts. Managing his pain was very important to me and I didn't want to take him home feeling like it wasn't controlled. He continued eating more and pooping.

Changing those first 50 diapers were comical. All of you moms would have died laughing at Mark and me for sure. We had never changed our 8 month old son's poopy diaper. Which way to wipe? How many wipes? How do I hold his legs? Where do I put the soiled diaper and wipes??? So funny.

On September 1st, one of the surgeon's partners saw Noah and told Mark (I was at my aunt and uncle's house sleeping) that Noah could probably go home the next day. When Mark told me that, I didn't take it seriously at all because of what happened the last time we were in the hospital with him. It turned out to be the case.

By 2 p.m. Sunday, September 2nd, we were on our way home and soo happy/terrified.  This was the part that I was dreading: Recovery...

Ps-According to the medical staff, this was the fastest they'd ever seen a Hirschsprung's kid go home after a pull-through surgery (4 days). Go Noah! The earliest they'd seen was 5 days.
He was pretty beat up when I saw him for the first time. Poor baby!



He was miserable. Broke my heart.

Getting either a dose of antibiotics or painkillers




Lots of annoying wires to worry about. No fun.




His IV went bad and leaked all over me.

checking out his balloons over his bed.
Very drugged out.


Wussup!

Grandma Dodie helped hold him so I could get a break.


This was taken right when he pooped for the first time out of his bum!
Here's my dad doing a "Poop dance"...We joined him, but I refrained from posting those pictures. You're welcome.



I POOPED!!!

Special delivery for Noah from my Aunt Colleen and Uncle Chip all the way in Ohio.

No more pictures Mom. Let me sleeeep...

Dad is a great pillow.

August 28th: taken when I received word from Mark that the doctors suspected Noah could go home the next day. Miracle!


Drinking milk for the first time in 4 days!
He'll always be my chubby-cheeked baby.


My little bug.

Surgery, part 2

After talking to Dr. Scaife immediately after the surgery, I couldn't believe the things he told us about what he actually did to Noah. I'll do my best to explain it in "normal people" language. They put him under, then put him into these baby stirrups. He stuck these clamp-type tools up his bum and then cranked it so that his anus was flipped virtually inside out. This was so he could sew the pulled-down section of his colon down to the anus. Can you imagine seeing something like that done to your baby?? I'm so glad he didn't tell me what he'd be doing before the surgery.

He went into great detail with drawings and simplified explanation to all of us in the waiting room (me, Mark, Kerri, Dave, my mom, dad). He answered any questions that we had and said to wait there until I was summoned to go see Noah. We waited another 20 minutes or so, then the receptionist called for me to go down and meet him in the recovery room. Only one parent could go.

I'm not going to lie. I expected him to still be pretty drugged and out of it--painless. I couldn't believe the condition he was in. He was in so much pain. I kept asking the nurse to give him something more but given Noah's special condition, he could only have a certain amount of pain medications because part of his recovery process is being able to go to the bathroom. Pain medications, especially the strong stuff, slow down your digestive system significantly. Because of that there is this fine line of giving him too much because the faster he could have a bowel movement the sooner we could go home. But seeing him like that was absolutely horrible. It continued that whole night--he would just moan and groan and seemed miserable.

I stayed up with him and tried to comfort him. I begged nurses to give him SOMETHING...something to take the edge off. A dose of Tylenol here and there, but AHH it was so frustrating! I wasn't mad at the nurses, just the situation. He had his morphine drip going constantly but that seemed to make him more sick (we later discovered that because as soon as we took him off of it, he was a different baby). He was in this painful state for over 24 hours, but by the next day he had spurts of the "old Noah". Luckily one of us could sleep there each night. Mark and I took turns sleeping there and I'm so glad we could. Noah was traumatized enough.

Noah loves his water.
These are the nurses who gave him enemas through the night.





The morning of surgery/

He loved this football that Aunt Fifi gave him before going to the hospital.




I brought his Panda from home. He was so excited to see it.










Heading out of his room to the surgery prep room.

Grandmas updating the family

You can't see Noah, but he was swept away by the guy on the right. I think this is the reason for his fear of anyone in scrubs for the next two months.

 
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