Good Days and Bad Days with lots of screaming in between

Sad News:  I've been pulling Clayton's newborn clothes out of the drawers to pack up.  I remember how excited I was to get to the newborn clothes (from preemie) and now we're moving to 0-3 or 3 month clothes.  Most of his growth seems to be in length.  He may be taller than me next week.  

We've had some really good nights (like last night--only had to get up once to feed him) and some really bad nights (can't make it more than 2 hours between feedings).  We're having a lot of trouble with feeding right now.  Clayton has had horrible gas since he was born (the nurses kept Febreeze in his NICU room).  It's been a problem since we've come home, but it's finally affecting his feeding.  He screams during most feedings.  A full feeding (100cc) should take 20 minutes.  Sometimes, it takes an hour for him to eat 45cc.  He won't eat because he's in pain, so he won't sleep because he's hungry.....it just becomes a terribly vicious cycle.  He typically eats fine during the night (God hears my prayers every night!), but starts the screaming with his 7 AM feeding every day.  There is only one way to hold him to calm him and if you move him from that position to try to feed him once he's calm, the screaming starts again immediately.  I know a lot of this is gas pains, but I'm afraid some of it may be behavioral too (karma is real).  

So....here are some pictures of Clayton, but don't be fooled....he's not always happy.

 The bouncy chair is a wonderful thing!  When he won't sleep in his crib, he'll usually sleep in his bouncy chair.

 The cats don't show much interest in Clayton.  Tiger might sniff him, but really doesn't seem to care about him.  Of course, Lily runs when she hears him screaming.

 It's really just been this past week that Clayton has enjoyed laying on his play mat.  It's a good thing :)

The video above shows you how Clayton feels about his swing....

Thanksgiving

I'm a little late on this post....

My parents and grandmother spent Thanksgiving at our house this year.  I loved every minute of it!  My brother Jason, his wife Jessica, and their son Jackson spent the weekend after Thanksgiving with us.  My cousin Morgan, her son Caleb, and Aunt Laura came over on Saturday to visit.  Here are some pictures from the visit.

 In the picture above, Jackson was plotting his attack on Clayton.  He poked him in the eye and slapped him in the head.  But don't worry, Craig got Jackson back.  Craig set Jackson in the recliner and Jackson didn't know how to get down....so he went head first to the floor.

Where's the Baby?

Everywhere I go (ok, that's not very many places...), I get asked why I don't have Clayton with me.  I always feel like people are judging me for keeping Clayton away from crowds and GERMS.  I am sure they are just eager to see him, but I get asked weekly by the same people.

I didn't know anything about premature babies before I had Clayton and I still don't claim to know much.  But what I do know:  Preemies are different.  Period.  Most people (I was one of them, I suppose) think that once a baby hits his or her due date, he or she is caught up with a term baby.  (I suddenly feel like I've already posted about this.....maybe I have, but I'm too lazy to look.)   That's simply not the case.  Premature babies are not term babies.  Clayton is very healthy, but he's not a term baby.  Preemies are at a greater risk of infection than term babies.  If he got RSV, it'd be much more severe for him than a term baby.  He does get a monthly shot (synagis) to lessen the effects of RSV if he were to get it, but that doesn't mean I need to throw caution to the wind.  I will not return to the hospital because I got him around crowds too early.  He won't be around crowds until this spring.

When people ask me constantly why I didn't bring him to church or school or wherever, I just want to answer, "Because I don't want my baby to get your germs..."  But I guess that'd be rude.

Can you tell it was a rough night?

Who has time to blog?

Obviously I don't...

We went to get another round of synagis today.  Clayton weighed 8 lbs. 2 ozs. at the doctor's office.  We'll go back in a month for the next round.

He may look peaceful in this picture, but don't be fooled; there is no peace within this boy!  At least he has strong lungs :)

What I'm thankful for...

Update:  Craig has been sick with a cold for over 3 weeks (he's just about completely over it) and I've been sick for the past week so you know what that means....Clayton now has it.  We went to the doctor today.  He weighs 7 lbs. 7 ozs.  Now, on to the post at hand....

I'm so very thankful for my mom.  She is an incredible help to me.  I'm still trying to convince her to move in with me....

I'm also very thankful for all of Clayton's nurses.  Each nurse took care of him so lovingly and kindly.  I was fortunate to have created wonderful relationships with several of the nurses--mostly because I was up there bugging them everyday :)  Here are some of his nurses.....unfortunately, I didn't get pictures of all of them (and not very many of the night nurses at all).

Christy

 Lori

 Lindsey

 Rebecca

 Callie

 Kim

 Susie

 Mary

 Karen

 Diamond Debbie

 Lindsey...again

Andrea

 Angela--she put in Clayton's PICC line

 Carolyn

 Terrie

 Yolanda

 Jamie, the secretary--she was so much fun.  If Clayton talks with a deep southern accent, Jamie will be to blame :)

Shampoo or hormones?

Ok, I need your help!  After I became pregnant, my hair became VERY oily.  I switched shampoos (from Pantene to Pert Plus) and that helped.  Now, my hair is doing it again.  I switched back to Pantene from Pert Plus, but that hasn't helped at all.  Will changing to another shampoo help or is this hormones?  How long will it last?  I guess it's good that I don't get out of the house much...looks like I don't wash it.  Gross.

A good day...

Alas, Clayton has taken two full feedings in a row with a killer nap in between.  Who knew that 2 hours to myself could be so glorious?  I got lots accomplished...even ironing.  He can be so cute when he's not screaming :)

Speech/Physical Therapy

This past Friday, Craig and I took Clayton for his first speech and physical therapy evaluations since we left the hospital.  It was so nice to see Lauren (speech) and Morgan (PT) again.  Everything is going well.  Lauren was happy with the progress Clayton has made with bottle-feeding.  He regulates himself now without us having to pace him much.  Morgan said he's in the 50th-75th percentile for gross motor skills for his corrected age.

Speaking of corrected age....
Many people believe that once a premature baby hits their due date, they have caught up and are just like every other baby.  Not so.  Clayton (as are all premature babies) is at great risk for developmental delay.  He should be caught up by age 2 years.  When looking at his development, you have to look at his corrected age--his due date (Oct. 27).  For example, this week, he'll be 3 weeks old. 

Here are some pictures from our appointment...

What a day...

I knew when Clayton woke up 20 minutes early this morning that he was going to throw off his schedule.  I know, 20 minutes is not a big deal...but it was today.  The day just avalanched from there.  Clayton didn't want to sleep today--he was more interested in keeping himself awake by screaming.  It kills me when everyone says, "Make sure you sleep when he sleeps."  When is that?  What good will 30 minutes do?  That only makes me mad/impatient/mean to be asleep for a few minutes before he starts screaming.  I'd rather be a zombie--at least I'm a nice zombie. The whole sleep thing can wait  for another post...

The missionaries in Peru our congregation supports have returned for a 2 month furlough.  Some people from church got together at someone's house for dinner to welcome them home.  I wanted to go, but at the same time I didn't want to go.  Craig was going to stay home with Clayton so I could go.  I felt horrible leaving Craig home with Mr. Screamy while I went off and socialized.  I'm also dreadfully tired, which usually leads to tears.  Because I wanted to see the missionaries and I had obligated myself to take brownies, I went.  I'm so glad I did.  It made me happy to see my friends.  The sweet, sweet woman who hosted the dinner is incredible.  She encourages me to be a better person each time I'm around her.  I was standing next to her refrigerator and saw her copy of Clayton's Halloween picture.  It made me so happy to see that she had it up.  This was also the first time I've gotten to be around her new son, Jack, outside of church.  I loved seeing him run and play and interact with other people.  I was especially happy to see him eat ice cream :)  

There is nothing like a church family.  I grew up in a wonderful congregation and am so happy that we have found a congregation here that we feel so close to.  It truly is a wonderful thing to spend time with my brothers and sisters in Christ.

Thanks, Brandi, for dinner.  It was exactly what I needed :)

A little game

Clayton has a new game he likes to play.  Here's the basics:  take only half of a feeding and then scream an hour later during nap time.  Apparently Clayton isn't too keen on the schedule thing.  It means I can't sleep during the day, or at night for  that matter, but I also can't get anything accomplished because he isn't napping.  I'm hoping this too shall pass. 

Went to the pediatrician today to get round 2 of synagis (RSV vaccine).  He weighed 6 lbs. 12 ozs.  We'll go back for the next round in a month.  We have our first out-patient speech and physical therapy appointments tomorrow.  I'm glad Craig will be out of school to go with us--it wasn't fun lugging the car seat, diaper bag, monitor, and case of formula (from doctor's office) by myself. 

Bath Time

My mom and I gave Clayton a bath tonight (Craig is sick and is keeping his distance).  After he finished eating, I took disconnected the monitor and got him ready.  This was the first bath that he didn't scream; he actually seemed to enjoy it.  As I lifted him out of the tub, I handed him to my mom who was waiting to wrap him in a cute monkey towel.  As she was holding/drying him, he threw up all that he had just eaten--all over himself and the towel.  We had to stick him back in the tub, but I couldn't get the throw-up towel off of him without getting it all over me.  So, I just stuck him back in the tub wrapped in the towel.  Eventually, we got him all cleaned up.

I love this little duck sleeper!  Thanks, Katie :)

**Side note:  We went to the eye doctor on Friday and his nerves have fully formed (babies 31 weeks and younger are at risk for the nerves not fully forming, leading to retinal detachment).  We'll see a pediatric eye doctor in April just as a precaution.  Hooray for sight!

Size Update

Went to the pediatrician today and got our 2 month shots.  Clayton weighs 6 lb. 4 oz. and is 18.25" long.  There were things in the hospital much worse than these shots--no crying for me and only a little from him :)  We'll go back for our synagis vaccine (RSV), but not again after that until 4 months.

If Clayton were a rice bag...

Craig was home the entire week after Clayton came home.  Sleeping was chaos.  My mom has been here this past week (I hope she never leaves) and Craig went back to work.  I preferred to get up in the night with Clayton instead of splitting it with my mom--that way, she could be bright-eyed and bushy-tailed during the day (I had tons of projects for her).  Friday night and last night were Craig's turn to get up at night with Clayton.  I got to sleep in my bed the entire night--glorious.  The only problem was that I'm crazy.  When the weather gets cold, I sleep with a couple of heated rice bags to keep me warm.  Both nights I was in my bed with them, I thought they were Clayton.  In whatever dream/semi-lucid state I was in, I was afraid to move so that I didn't wake him up.  One time I woke up and picked up my phone to call Craig for help in feeding Clayton--thankfully I realized that bags of rice don't need to be fed before I actually called him.  

I'm going back to the hospital today (and tomorrow) for the first time since discharge.  I have to take Halloween cookies to the sweet nurses :)

Monitor for Sale

At first, I thought an apnea monitor would give me peace of mind.  Now I understand how anxious I am to get rid of it.  Clayton can be quite feisty, which raises his heart rate, which alarms his monitor.  Like I didn't know my baby was screaming his head off.  In order for the monitor to work properly, you have to have the band of leeds attached so tightly it's suffocating (see picture below--the leeds are connected to a soft band that wraps around his chest).  If it's a tad loose, the band can shift and then the alarm sounds inappropriately.  Last night, it alarmed twice telling me he wasn't breathing.  I readjusted his band.  It did that again tonight.  I wish the monitor had wave forms on it so I could tell immediately if it was reading correctly.  My other complaint is that it's annoying to carry around.  When Clayton is hungry, I'd like to be able to carry him into the kitchen while I get his bottle (those are high heart rate moments), but it's too much trouble to move the monitor so I have to set him down and let him scream while I get it (and wait for the monitor to alarm).  But, I suppose I'll take the annoying monitor if it means he's at home :)

Happy Halloween!

Katharine Persephone Zakos

My best friend growing up was Katie.  I'm not sure why Katie and I were friends--we're pretty much as opposite as possible.  Our only common trait is that we're both nerds :)  What I love most about my friendship with Katie is that we can go many months without talking but pick up right where we left off when we do catch up.  Just wanted to let her know I appreciate her!

Get him on a schedule!

I've heard that over and over--schedule, schedule, schedule.  But nobody told me how.  Do I just write down what he does when until I notice a pattern?  For a week, my house was without order; I never knew when Clayton would be doing what.  I talked to my brother about my sleepless nights and he said that if I can get Clayton on a schedule, he'll start sleeping through the night.  I could go for that.  He suggested On Becoming Babywise and said that his wife had seen a copy of it at my house.  I realized it must have been a book lent to me this summer that I never got around to reading and had already returned.  My gracious friend Katherine brought it back to me (with a plate of cookies) and I began reading the parts about schedules and routines.  While I know it won't be perfect and it will take awhile to train Clayton, just the thought of order and routine makes me giggle :)  Here's to hoping he's a quick learner!

Pictures from Sunday

Pediatrician

For the first several weeks of our NICU stay, I pored over pediatricians' names (the pediatrician does not enter the picture until after discharge).  I asked every nurse who they recommended and heard a different name each time.  After considering several names, I realized it was more a decision of group size--did I want a small practice or a larger one.  Craig and I weighed the pros and cons of each and I ultimately settled for a larger practice.  I chose the pediatrician that my dear friend Michele uses.  When we were discharged on Sunday, the neonatologist insisted that Clayton be seen by the pediatrician on Tuesday.  Our chosen doctor didn't have any openings until Thursday, so I made the appointment with another doctor at the office.  It didn't really matter to me because I had not met the pediatrician I chose--maybe I'd like this other guy fine.  After the appointment, I was confident it would be best to hold out for my friend's doctor.  We saw him yesterday--I can't imagine a nicer doctor.  It was such a relief to see that he'd be perfect for us; after all, as he told us, we'll be spending a lot of time with him over the next few years. 

A Busy Weekend

Clayton's due date was Oct. 27.  All summer, I told Craig that Clayton would be born on Friday, Oct. 14 in the evening.  My reasoning was that the following week, Craig would be home on Fall Break.  And it needed to happen at night because I was home alone during the day.  Two weekends ago, Clayton was a beast with his feedings--he did so wonderfully.  Craig and I made a bet on when he would come home.  Naturally, I thought Friday, but Craig predicted Sunday.  The next few days weren't great--we slid backward on the eating.  He dropped his heart rate some and didn't finish all of his feedings.  I was sure he would never come home.  When I asked a nurse practitioner about a discharge estimate, she said maybe Tuesday or Wednesday (of this week).  Even so, I've watched families stay past their estimated discharge dates because of something at the last second (weight loss, low heart rate).  So, you can imagine my shock when I got a phone call during Sunday School from the same nurse practitioner saying he would come home that day.  Rats!  Craig's prediction was correct.  

We had been looking at video cameras and thought it would be nice to get one for Christmas.  I had mentioned to Craig that we could go ahead and buy one with gift money.  We stopped at Best Buy on our way home from church and bought one.  I'm so glad we did because we were able to capture Clayton's goodbyes to his nurses.  The NICU nurses at Methodist Germantown hold a special place in my heart.  They loved Clayton like he was their own and they put up with me for 7 weeks.  I will treasure our video of each of them telling Clayton goodbye.  

We made it home....and the rest has been eating, sleeping, crying, and diaper changes.  I'll post some pictures soon.

Just wait....

There will be a new post soon!  The most important piece of information:  Clayton came home on Sunday.

Changes in orders

The past two days have not been stale.  On Wednesday, Clayton had a nerve block, circumcision, and an RSV shot.  Yesterday, he was given permission to become a glutton.  Normally, Clayton eats 40cc every three hours (30cc=1oz).  The nurse practitioner wrote in his orders yesterday that his feeding is ad lib, ad lib--meaning he can eat however much he wants whenever he wants.  At 8am, he ate 45cc.  At 11am, he took 50cc.  At 3 pm, he ate 50cc.  And the he took 50 more at 5 followed by 40 more at 6.  What a chunk!  He currently weighs 4lb. 13oz.

The following pictures are random.  You'll notice Clayton's NG tube is gone and that Craig is still able to watch football while holding Clayton (bottom pics).  Note: I did NOT put that bean bag on his head, a nurse did.