Sjogren's Mom

The Story of a Mother of Two Living with Sjogren's Syndrome

August 2008 - Posts

Elephant Skin

I think my son and I have finally got on a good nursing/sleeping schedule now.  He is going in for another weight check to see how much he's gained in the past week tomorrow, so here's hoping that he's not only up, but up over birth weight at this point.  I'm thankful that he's eating well now, except I'm missing those first few days where he slept nearly non-stop...and slept in his bassinet.  Now he'll eat around 10:30pm and then we'll tuck him into his bassinet for the first bout of sleep (usually 2 1/2 hours) and once he's up to be changed and eat, he won't go back in the bassinet.  Just cries.  And there's nothing better than having a newborn and a 28 month old up at 2am...so I don't fight it.  Either myself (during the week) or my husband (on the weekends) ends up sleeping with him laying on our chests.  Last night we folded and put him in the swing for a 2 hour sleep bout.  I don't want to get used to that, but at this point we both need to get more than 2 hours of sleep at night.

On another note, the skin on my hands has now crossed from dry to elephant like.  Rough, rough, rough and not only looks like thick elephant hide, but also feels like it.  Think it's aging me pretty quickly.  I've been loading up on lotion after nearly every wash of the hands (given that's about all I do between diaper changes and trips to the potty with my son), but that's just not cutting it right now.  In addition, the corners of my mouth are still splitting, so I must look like I've been living pretty hard.

Posted: Aug 20 2008, 06:30 PM by amop | with no comments
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He's 2 Weeks Old!

Wow, time flies.  I can't believe we've been home over a week...and our little peanut has been in the world for 2 weeks now.  In the last week, the swelling in my lower legs, ankles, and feet has subsided (thankfully).  However, I've developed a good case of dry everything - my lips are dry, the corners of my mouth have split and bled numerous times, and my hands are dry, cracked, and occasionally bleed.  I've gone back to using hand cream with every wash, and I've been using the non-soap hand cleanser (Savannah Bee...which Bath & Body Works no longer carries!) for nearly every wash.

Our little peanut has had some nursing issues - just too sleepy and lazy to really nurse.  We've been back and forth to the pediatrician a few times, and finally at the last visit he started to gain.  Hopefully at tomorrow's visit he'll be up a bit more.  In the meantime, the majority of my days are spent trying to nurse, nursing, or pumping then feeding it back to the peanut using an SNS feeder.  Literally takes me nearly all day to stay on top of the feedings.  Looking forward to getting to the 20 minute nurse every 2 hours.  At that point I think I'll finally be able to manage on my own.  Or try to!

Thankfully, my parents live just 15 minutes away, so my Mother has spent the majority of the day with me since my husband is back at work.  She stays until my two year old is down for his nap...and when he's up it's nearly time for my husband to be home, so for those few minutes or hour I'm usually fine.

Good thing is although our peanut isn't the best eater right now, he's a good sleeper.  We get at least 2 hours in a row, if not 3 or 4.  However, that's part of the problem with nursing...by the time he's awake to nurse he's SO hungry he fights me.  Think we're working our way through that and finally getting into a groove.  Today went very well, haven't had to pump all day...here's hoping that continues.

The fatigue hasn't been too bad.  Although I am trying to lay down and nap in the afternoon when both of the boys are asleep.  I managed about 30 minutes today before our afternoon company arrived.  Yesterday I got well over an hour.  My husband actually called on his way home, and when I didn't answer the phone (I have the ringer turned off upstairs), he called my parents in a little bit of a panic.  Luckily my Mother was home and knew that I was going to lay down for a rest.  I just remember being SO much more tired with our first son.  Probably because he didn't sleep.  We'd have to hold him all night long...and he wanted to eat every hour for about 45 minutes...so there was about 15 minutes of time in which we changed diapers and he had a little nap.

I'm fortunate not to have had any major signs of a Sjogren's flare-up...at least from what I can tell.  I'll be meeting with my rheumatologist again in a few weeks, at which time I'm sure I'll discuss what I've been going through.  Hopefully she won't notice any signs of a flare-up either.

We're Home!

Everything went as scheduled.  No surprises here, as my husband and I are two very planned individuals.  I went in to the hospital around 7am on Wednesday morning, by 9am I was walking my way into the OR and getting up onto the table for my spinal.  By 915am my spinal was set and they were beginning to prep me for surgery.  My husband was escorted in to find my teeth chattering - a side effect of the spinal (last time I had the nausea, so I'll take chattering teeth).  He sat by my side until about 935am when the OB let us know that the team was close and if he was interested, he could stand up and watch our son being born.  I was just glad he didn't pass out.

Our son was born at 940am, and they whisked him away to clean him up and check him out - initial APGAR of 8, 9 after 5 minutes.  All great signs.  He was crying like a mad man the whole time - what a great sound to hear from behind the drapes.  The OB let us know after everything was over and they were going to wheel me into recovery that he presented ear first...like he was listening to what was going on outside the womb.

My first glimpse of him was on the scale...and as most of the people in the OR knew my first son was 10lbs 7oz, we were ALL eager to see how close our guesses were.  He weighed in at 7lbs 15.6oz...so they round up to 8lbs even.  He was 21 1/2 inches long - just 1/2 inch short of his big brother.  LONG child with very long fingers.  He doesn't look too much like his big brother, and definitely has Mom's fingers and toes (including her crooked second toe!).

Everything went like clockwork, they wheeled us into recovery for a little while and by about noon we were settling into our hospital room.  He was a great nurser early on, and after his circumcision backed off a bit.  We're still working on the ideal latch and a good length of nursing time, but so far so good.  The doctors let us know that we could leave the hospital a day early, and given we missed our older son SO much (although he was a real trooper the days we were gone!!), we decided Saturday morning to leave so we were home in time for dinner.

That was a great decision - was amazing to see our older son after several days (we've never been apart!), and we actually got more rest at home that night than I think we would have gotten in the hospital.  Unlike our older son, this peanut is a sleeper...he gave us several multiple hour sleep spells the last few nights...and he sleeps most of the day.  We went to the pediatrician this morning and although he's down to 7lbs 1oz (his lowest on Friday night was 7lbs 4 3/4oz), the doctor wasn't too concerned given his pee output.  We're going to get another weight check on Friday just for peace of mind, but it was nice to have a good feeding earlier today.  Here's hoping that stays consistent.

No signs of anything Sjogren's related, especially the heart block.  I did get a nice external yeast infection (oh joy) and my feet and ankles are very swollen.  However, I've backed off the pain medication and am making due just taking it easy.  I definitely had more discomfort early on with the incision, but today was able to get out to the doctor and then out to the sandbox with my older son for a little while.  Definitely miss my one-on-one time with him, but luckily my husband's been able to be home with us and helping supplement my lack of availability (especially when it comes to the toilet training).  He's also been a real trooper with diaper changes (think I've done 1 these past 6 days...even though I've helped with most of the others).

Here's hoping the next few days I get more mobile and back on my feet...oh, and start dropping the weight.  Although it was nice to eat by day 2, it didn't really help me lose anything.  Came home a whopping 4 lbs lighter.  Woo hoo.  Guess the swelling doesn't really help with the weight loss.  I know that last time it was a few days after I was home that I finally noticed a big drop.  Here's hoping it happens again.  Although I'm only up 50lbs (instead of the 60 from last time)...add the 10+ lbs I put on getting pregnant and that's still a nice chunk of weight to get off.  I'm in no hurry to be in a bathing suit or modeling skimpy garments any time soon...just looking forward to wearing more than 2 pairs of maternity shorts :-)

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