Two steps forward and the March for Babies

Cayden took his first couple of steps!  He first did it a couple of weeks ago during a physical therapy session, where the therapist was trying to encourage him to 'cruise' between the main part of the couch and the chaise part that comes off of the main part at a 90 degree angle.  He turned toward the chaise, let go of the couch, and took one, then another unassisted step toward the chaise before grabbing hold of it.  There were two therapists working with him that day and we all looked at each other with wide eyes before I finally said, "Did he just take his first steps?!" and ran to get the video camera.  Of course after that, he didn't do it anymore.

About a week later, he did it again, this time in front of me and one of our nannies, in the kitchen.  I grabbed the camera (which happened to be right there on the kitchen counter) and switched it to video mode, ready to capture the moment, but he just plopped down on the floor and played with a dust bunny or something.

He's been getting a lot of practice by using his 'walker'.  We have two kiddie chairs - the plastic outdoor type - that are stacked together and hanging out in the living room.  They just so happen to be the perfect height where Cayden can grab hold of the arm rests and walk around, pushing the two chairs all over the smooth wooden floor.  It cracks me up!  He really MOVES when he uses them, and he looks like a little old man pushing his bright red custom walker.  I have a video of it that I'll have to see if I can upload here.  (It's uploading to YouTube as I type, so once it's done, I'll try to put it on here.)

Of course I can't wait for him to walk - it will be such a huge milestone for him!  But what will make me really happy is if he waits about 10 more days so that Jason will be home and we can all celebrate the event together.

In other news, both boys had a wicked case of some sort of stomach bug that lasted two full weeks.  Thankfully, it ended a couple weeks ago, but it was pure hell for 14 days.  My Grandma Lena came to visit smack in the middle of it, and for the first few days of her visit, they couldn't enjoy any of the yummy goodies she brought with her (BRAT diet only for those poor boys!)  Nonna did a wonderful job comforting both boys and I'm so glad she was here to help us through that tough time.

Cayden has been showing interest in using a spoon and loves to try.  He might actually get some food in his mouth if you help him get it from the bowl, but given free reign over both the spoon and the bowl, what you end up with is a giant mess! 

He hasn't had a bottle in a couple weeks now and has been doing all of his drinking from a sippy cup, so that's exciting!  I am SO happy not to have to wash all those Dr. Brown's bottles and parts anymore!  AmyJo, our occupational therapist, said today that he's closing the gap on his fine motor skills to the point where he's almost caught up to where he should be for his actual age and may not need these services for much longer.  So what that means is that he's doing things a typical 17-18 month old would do (his actual age) and is way beyond what a 14 month old (his adjusted age) would be doing.  Now we just have to work on his gross motor skills...

Which reminds me...a couple weeks ago, the physical therapist mentioned that it looks like Cayden is still weak on his right side and may need braces for his legs to help him learn to walk properly.  We have a meeting with an orthotics specialist on May 14th to get her opinion and then if needed, have him fitted for leg braces.  I'm sad that he may have to deal with this little inconvenience, but if this is the only thing he has to overcome, I'll be thrilled.  Given where he started in life, I'm amazed this may be all we have to deal with.

And finally, some exciting news!  The March of Dimes March for Babies was this past Saturday.  Our team raised over $1800 thank to the generosity of  friends and family.  A big thank you to those who donated on behalf of Team Cayden Ferguson!  We had a beautiful day (despite what early weather forecasts were saying) and it was so nice to see some friends and support a great cause.

Team Cayden Ferguson - Jessica, Bridget, Patrik, Kathy, Christa, Becky, Laura with Morgan in front and Jamison and Cayden in the stroller.

20/20

Last Friday, Cayden had his one year follow-up visit with the opthamologist.  Preemies have something like a 20% chance that there will be some sort of early, profound vision problems, but this seems to be another bullet we have dodged.  He shows no signs of impaired vision or misalignment issues like lazy eye or cross eyes and Dr. Enzenauer says we are good to go for another year before we have to follow up with him.  Once again, we are so thankful.

For those that haven't heard, we've had some crazy, warm, dry, windy weather here in Denver.  March is usually our snowiest month and we haven't had a single flake all month.  Temperatures have been in the 70's most of the month and are supposed to climb into the mid-80s this weekend.  The wind has been absolutely insane many days this month as well, but we've been trying to get out every day to go for a walk and enjoy the sunshine.  That was our routine, at least, until a major forest fire broke out this past Monday afternoon in the foothills west of town.  Although we live on the far southeastern side of town, the smoke and ash from the fire has been a problem.  The first couple of days it was so bad, you couldn't walk to the mailbox and back without coming home smelling like you'd been sitting next to a campfire for hours.  There was an advisory posted warning people to stay indoors through Tuesday of this week, but I think that has been dropped.  They are still advising some people to not go outside: the very young, the very old, and anyone with cardiac or respiratory issues.

Because Cayden has chronic lung disease (albeit a mild case from what we were last told), I've been avoiding taking him outside since the fire started on Monday.  Today was such a beautiful day, and you couldn't see or smell any smoke in our neighborhood, so I was just dying to go out for a walk.  Just to be safe, I called Dr. Rosenberg's office to get their advice on the matter.  No joy - they said because of his issues, and especially because he had a bit of croup a couple weeks ago, he should not go outside until the fire is out. 

I really want to whine and cry and stomp my feet in cabin fever frustration, but when I think about what other people have lost because of this fire (EVERYTHING, their homes, their lives...), I get over myself.  It sucks to be cooped up inside when it's so nice out, but at least we still have our home to be cooped up in.

Marching for Babies

Later next month, I will be participating in the March of Dimes March for Babies, a three mile walk and fundraiser.  I wanted to do it last year, but we had just brought Cayden home from the hospital a few weeks earlier and life was totally chaotic, so I promised myself that I would do it this year.

The March of Dimes has funded research that without a doubt saved Cayden's life and I feel like it's the least I can do to try to help raise money for their efforts.

Jason will still be out of town, so I'll be bringing both boys with me, pushing the double BOB stroller, and walking with several friends on our team, Cayden Ferguson.

I haven't done any fundraising in a long time - probably since I hocked Girl Scout cookies thirty-some years ago - and things have changed a lot since then.  It's all online and electronic which makes it easy in a lot of ways, but also somewhat impersonal.

Alas, that is the point of this whole March, so if you follow the blog and could find it in your heart to make a donation, I, Cayden, and millions of other babies would be most grateful!  You can use the link below...
Donate to the March of Dimes in honor of Cayden

Thank you!

Homecoming anniversary

It was one year ago today that we brought Cayden home for the first time after 111 days in the NICU.  It seems so long ago and I can't even digest all that's happened in this past year.  All I know is I never imagined we'd get here in such good shape!

I think Cayden wanted to celebrate by forcing me to take him to see Dr. Rosenberg, his current pediatrician and one of the attending neonatologists while at the NICU.  It all started last night when Cayden got pretty fussy at dinner.  He didn't eat much then just started crying.  Jason took him upstairs and checked his temperature - 99.5 - so he gave him a dose of Tylenol.  Since he's cutting two molars, we figured his teeth were hurting.  He was still very fussy for the next hour or so until we could get him to bed, but amazingly, he slept through until 5:30.  He usually doesn't wake up until around 8, but I wasn't surprised he was up that early.  Since he didn't eat much for dinner, I thought hunger woke him.  His temperature was up to 100.5 and although he drank a whole bottle of milk and ate a bit for breakfast, he was still pretty fussy.  More Tylenol didn't seem to help.

Today was the day Jason left for two months in Cairo.  I had to take him to the airport, so after breakfast, all four of us loaded up in the car for the ride.  I thought Cayden would sleep in the car, but he didn't.  We dropped Daddy off, said our tearful goodbyes, then the three of us headed home.  Once we got in the house, the non-stop crying began.  He would not eat, he wouldn't sleep, he was absolutely inconsolable.  The only way I could settle him down was to hold him, and then sometimes even that didn't help.

The home health nurse was scheduled to come to the house to give him his last dose of Synagis (the RSV vaccine) this afternoon, but since he wasn't feeling well, I wasn't sure if we should still do it or not.  I called and spoke to a nurse at the Special Care Clinic and she advised us not to give him the vaccine and that it sounded serious enough that I should bring him in to be seen.  She said it sounded like maybe he had an ear infection and since it was Friday, she didn't think it was wise to wait it out over the weekend.  Apparently Dr. Rosenberg wasn't seeing patients today, but the nurse paged him to ask his advice and he said he'd come down from his office and see Cayden at 2:45.  I really appreciated that.

So after a few more hours of inconsolable crying, the three of us (I had to bring Jamison along since I'm now a pseudo-single mom as of 10:00 this morning) loaded back up into the truck and headed to Children's Hospital.  Dr. Rosenberg examined him and diagnosed him as having a viral infection (most likely para influenza) with a touch of croup.  I was panicked at the mention of him having croup again after our experience being hospitalized for it last fall.  Hopefully, now that he's five months older and stronger, it won't be as severe.  The really strange thing is that aside from a slight fever, being fussy, and not eating well, he's really not showing any signs of being sick (no runny nose, no cough, no sneezing.  The "croupy" noise comes when he inhales while crying, and I never even noticed it.)

Anyway, he got a dose of steroids at the office and we were told to keep him hydrated, control any pain with Ibuprofen, and to run a cool mist humidifier in his room at night.  They sent us home with a prescription for another dose of steroids if he gets worse but said one dose usually does the trick.  He napped briefly in the late afternoon, ate a decent dinner and drank a good bit of milk before falling asleep around 9 tonight - I'm keeping my fingers crossed that he'll sleep through the night and kick this bug soon.  It's going to be a looooong 60 days without Daddy if there are many more like today.

Happy adjusted first birthday!

Today is the day we should have been celebrating Cayden's first birthday - one year after his due date.  Instead, he's been with us for 1 year, 3 months, 1 week, and 2 days.  This is supposed to be the magic day when Cayden should be past most of the major hurdles and issues he faced as a preemie, namely, his immune system is supposed to be mature and caught up by now.  But the fact that it's smack in the middle of cold/flu/RSV season means, per our doctor's advice, we are still going to stay in hiding until later this spring.  Hopefully, we'll have our freedom back and be able to get out of the house and be more social sometime around the end of April/beginning of May.

We have another reason to look forward to the beginning of May.  Jason accepted a new job training pilots for a Canadian company that contracts with airlines all over the world.  His first assignment is in Cairo, Egypt and he is scheduled to leave sometime around March 10th.  He will be gone 60 days then should be home for 20-30 days, so that will have him home sometime around the second week in May.  I'm not thrilled with him being gone for so long, but when you do the math, he's gone just as many days in the same time span at his current job.  The volatile location worries me too, but it's better than his other choice, which was Afghanistan.  He has several friends who have been flying these gigs for a couple of years, and they've tried recruiting him before, but we are just now reaching the place where I feel like I should be able to handle things with him gone that long.  There is no way we could have done it a year ago, or even six months ago.  The money is excellent and it will help us catch up on what we've lost with my not working. The bummer is that I definitely won't be going back to work with him gone that much. The plan is to try it for a year or two, then take the money and run. Neither of us wants to live that kind of lifestyle for very long.

Even though things are much easier now than they were a year ago, I'm not sure how it's going to go being a single mom of two under two.  We're trying to get things in order so that I have help from a nanny a couple days a week so that I can cook, shop, run errands, cut the grass, pay the bills - all the things that need to be done to run a household but that you can't exactly get done with two toddlers always needing attention. 

Speaking of nannies, we've been so happy with our new nanny, Kelly.  She's been helping me just one day a week for the past month or so, but I'm going to need more help than she can give once Jason leaves (she also works for another family and is enrolled in college classes).  So I guess I need to get back to the nanny search to see if I can find someone else who can supplement when Kelly isn't available.  I'm dreading the task because it seems that besides Kelly, most of the people I've contacted about nannying are either psycho or totally flaky and unreliable.

So to get back to Cayden and his big pseudo-birthday . . . it will still take him a couple of years to catch up completely on developmental milestones, but for now, he's right on track with where a one year old should be.  He's crawling like a speed demon!  It's so funny to watch his little butt wiggle side to side as he speeds across the room.  (I need to get a video of that to put on here.)  He's cruising the furniture a little more and I think taking his first steps will be coming soon.  He's learning to use his sippy cup at mealtimes and isn't so interested in the bottle anymore.  He gets really forceful when he doesn't want it anymore and he'll push it away so hard that sometimes he knocks it out of your hand!

He's also going through a phase (at least I HOPE it's just a phase!) where he screams and cries and wakes up in the middle of the night several times.  We've had a few nights these past couple of weeks where we've been up most of the night trying to get him back to sleep - holding, rocking, giving him Tylenol thinking maybe his teeth are painful, rubbing his back, but as soon as you think he's asleep and tiptoe out of the room, he shrieks and gets all worked up again.  The last couple of days he's also been screaming and crying when you lie him down for a nap or at bedtime.  I think I finally figured out that he's playing us, and if you just let him cry, he'll usually pass out within a few minutes.  Smart little sucker!

He got his first molar a couple weeks ago and number two is about to pop through any day.  He really needs a haircut, but I don't want to cut it myself - I want to take him to one of those kiddie places so someone else can do the work and I can take pictures.  But we can't take him until May-ish, so he's going to be one long haired hippie boy for a couple more months!

Letting go

Cayden seems to have had a surge in developmental achievements here lately.  He switched from army crawling to regular crawling a couple of weeks ago and hasn't looked back.  You have to watch that little guy - he is FAST!  Sometimes I'll set him down on the floor and try to make my way over to close off a baby gate at the top of a set of stairs but he crawls faster than I can walk so I end up having to run and trip over him to get there before he goes headfirst down the stairs.

He's just starting to cruise the furniture (where he pulls himself up onto his feet then moves along the edge of whatever it is he's holding onto) and today, during his OT session, he let go two different times for a second or two each time.

We had a visit with the Tri-County home health nurse yesterday.  She's been coming once a month since Cayden came home from the hospital almost a year ago.  She weighs and measures him, does a quick physical exam, and assesses his gross motor, fine motor, problem solving, and communication development periodically with a questionnaire called the ASQ.  Since her last visit, he gained almost two pounds!  His weight is up to 21 lbs. 10.7 oz. and he is between the 25th and 50th percentiles for his adjusted age's weight and height.  He is meeting all of the goals for his adjusted age and she's thrilled with his progress.  So thrilled, in fact, that we decided it's probably not necessary to have her come any more.  I've always looked forward to her visits just to have that monthly reassurance that he's doing o.k., but now we're letting go of that security blanket. 

Cayden will see Dr. Rosenberg at the Special Care Clinic on Friday this week for his 15 month check up and vaccinations.  We haven't been there in over two months, so I'm sure they're going to be impressed with how big he's gotten!  After this visit, I don't think we'll have to go back until he's 18 months old, so that'll be a three month stretch without any medical check ups. 

While it's so exciting that we're finally getting to the point where we no longer have to be so concerned about every little thing with Cayden, it's hard to get used to the idea.  I know he's doing well and will continue to thrive and gain ground on his developmental achievements, but after 15 months of having every little thing scrutinized, measured, debated, and basically decided for us, it's hard to let go of that professional guidance.

We've settled into a routine where Cayden eats all three meals with us in his high chair and he's eating pretty much everything we do.  I don't think I've found a food he won't eat!  We're still working on getting him to use a sippy cup, and for now, we're giving him three bottles of milk a day, one after each of his meals.  When we give him the sippy cup with his meal, he gets so distracted with it, he doesn't eat.  Once he gets the sippy cup down, that'll be another big milestone.

Cayden has a new favorite pastime:  picking his nose.  One finger, two fingers, one hand or the other, that boy always seems to have a digit up his nostril!  I'm sure he'll be the one we have to take to the ER to have a marble or something removed.  But he's still cute.  See for yourself:

Tapeworm?

Don't be frightened - I don't really think Cayden has a tapeworm, but MAN that kid is putting away the food lately!  Under advice from our occupational therapist and dietitian, we are upping the amount of solid food he gets in a day and cutting back on the milk.  Ideally, he should be eating three meals and two snacks with a maximum of 24 ounces of milk a day .  Just a week ago, we had him drinking about 31 ounces of milk and only eating what could be considered a couple snacks and I think he's making up for lost calories!  He's sitting in a high chair now (thanks to the Ericssons for loaning us their old one so we didn't have to buy another one since Jamison is still using his for the time being) and we can't slice, dice, tear, and feed him the food fast enough.  He double-fists things into his mouth.  Half ends up in the pocket in his bib and half makes it in his mouth.  We recycle the stuff in the bib and he eventually gets that down too.  The dietitian said a "meal" for him would be about 1/4 of what an adult would eat.  I swear he's eating about half of the amount I'd eat!  It'll be interesting to see what he weighs at his 15-month check up in February.  As of January 13th, he was 19 pounds 14.5 ounces.

In other developmental news, I think he's finally catching on to the benefits of real crawling.  For quite awhile now, he's been "army crawling" - where he pulls himself forward with his forearms and sort of drags and kicks his legs behind him.  Starting about two weeks ago, we'd see him crawl a few steps, but he'd only go a few steps then flop down on his belly.  He gets around pretty quickly using his unconventional method, but not quite quickly enough to keep up with his brother.  In the last day or two he's been crawling a lot farther and more often.  Hopefully he'll convert over to all crawling here soon.

He's also figured out how to pull himself up on things.  First he gets on his knees, then he pops up to standing, leaning on his activity table, on your leg, on his crib, on the edge of the bathtub - whatever he can find.  Getting back down is another story... 

He's had a cold for almost two weeks now.  Thankfully, it never got really bad, but there were a couple of nights where his nose was so stuffy that he couldn't breathe and hence, didn't sleep well at night.  And once again, he's teething like a drooling madman at the same time.  My guess is that the stress of teething lowers his immunity a little and makes him susceptible to the tiniest exposure to a cold bug.  So on top of having a cold, he's miserable because his mouth hurts.  Poor little guy.

Two weeks ago, we ended our relationship with Jamison's daycare provider.  We had hoped that Cayden would be able to join him there in April, but the spot that was open that we hoped would be his was taken by another infant.  Jason has been home since this change happened, so we've been able to manage the transition up until now, but we're looking at having a nanny come to our home one or two days a week to help out when he's gone for long stretches of time.  Having both boys home full time is going to be a challenge, but I hope that things will continue to get easier so that I can take care of both of them, meet their needs, and keep them entertained and reasonably happy all day, every day!

All I want for Christmas is my four front teeth

Well, four front teeth, and to be home with all four of our family members under one roof for Christmas.  That's what I wanted, and that's what I got - and then some.

I am about to tear into this present!

It was such a different, joyous, sensory Christmas compared to last year's numbness and anxiety:  smelling cinnamon rolls baking in the oven, hearing both boys giggling and squealing and ripping paper off of presents, watching them play with their new toys (or in Cayden's case, eat the paper they were wrapped in), feeling both boys crawl all over me in an attempt to get in my lap.  There's nothing like it in the world!

Three days before Christmas, we got a ton of snow.  It hadn't melted much by Christmas Eve, so we took the boys out for a spin around the block.  We pulled Jamison in his little sled and pushed Cayden in the stroller.  Jamison had a good time, but Cayden fell asleep.  That evening, I made my first attempt at making homemade pizza.  It turned out pretty good, and that's what we had for dinner.  I'm trying to think of family traditions we can start that the boys will look forward to and enjoy for years and years to come.  Food has always been a central theme in my family, and I have so many good memories of meals associated with holidays.  With two under two, I don't think I'm ready to take on preparing the feast of the seven fishes on Christmas Eve or sarma (stuffed cabbage) and torte on Christmas Day, but for now, homemade pizza is something I can do!  We had ham on Christmas Day, but eventually, I'd like to make fondue our Christmas Day tradition.  We had it two years ago, the year Jamison was born, but it's a lot of work and it won't really be appropriate for the boys for a few more years.

Another tradition I hope to continue is going out to look at Christmas lights.  We bundled the boys up and took them around the neighborhood on Christmas night.  It was cold, but I think they enjoyed it.

Ready to go see some Christmas lights in the neighborhood

 Along with all of the holiday merriment lately, we've had lots of happy developmental happenings.  A couple weeks ago, Cayden achieved two big milestones in the same day:  he started holding his own bottle during feedings and he began pushing himself up to a sitting position from laying down. 

Holding my own bottle!

Within the past week, he started pushing himself up on all fours.  Jason and I both swear we saw him crawl a few steps, but it was on the bare floor and I think the smoothness of the floor helped him sort of slide his legs along so it just looked like he was crawling.  Either way, I don't think it'll be long before he really is full-on crawling!

Physically, he is a chunk!  He's got to be 20 pounds by now.  His last weigh-in was December 8th and he was 19 lbs. 8 oz. then.  His hair is getting sort of long and now I'm not sure if it's going to be light or dark.  I used to think it was going to be dark, but now it almost looks light, like Jamison's.  It is definitely curly when it's wet, but after he sleeps on it, it gets all whacked out and just sort of looks fluffy.  He's been shaking his head "no" and loves to go back and forth with Jamison when Jami imitates him doing it.  He's also more vocal, making his wants known with grunts, yells, and shrieks.  He likes to laugh and does a lot of plain old babbling.  Today, we think he said "da-da" when Jason walked in the room!     

Within the past week, we completed the transition from formula to whole milk, so now we don't have to mess with mixing, measuring, and making up formula (not to mention all the money we'll save!)  He no longer has any thickener added to his milk - one less thing to measure, add, and shake up.  He no longer needs his reflux medicine - no more phone calls and trips to the pharmacy every 28 days; no more having to force medicine down his throat; no more having to torture him by making him wait 20 minutes after taking his medicine before giving him his first bottle of the day; no more having to pay for said medicine.  Because he is sitting up and using his core muscles so much, his reflux is much more under control, so we no longer have to hold him upright for a half hour after each feeding.  He still spits up a little here and there, but it's nothing like it was.  Life gets easier every day and I am so relieved!  There IS light at the end of this long preemie tunnel!

Merry Christmas!

Blood pressure check

Just a quick update to let everyone know that Cayden's blood pressure was normal at his doctor visit today.  They checked it in both arms just to be sure and Dr. Rosenberg said it's all good and we don't have to worry about it anymore.  WHEW!! 

And he weighed in at 19 lbs. 6 oz.  :-)

So much to be thankful for

We had a houseful here for Thanksgiving, and while it was pretty stressful and at times chaotic, all in all, it was worth it.

My dad, step mom, little sister, grandma, and cousin all came to visit and stayed with us for varying amounts of time.  Gruncle Don and Graunt Kay had to cancel at the last minute due to a plumbing disaster in their home the night before they were supposed to travel, and they were sorely missed.  The best part was that Cayden and Jamison got to see family they haven't see in too long (or never, in some cases!)

With Nonna Lena

Sitting at the Thanksgiving table with big brother Jamison and Aunt Vickie

I loved meeting my Aunt Vickie!

With Grandpa Ray, Popo Xian, and Aunt Vickie

Thanksgiving dinner was a success, and although Cayden didn't have any of the adult food, he was a big part of the celebration.  Hands down, he is the biggest thing I am thankful for this year!

Aside from the excitement of company, over the past couple weeks, Cayden has been through a lot.  He had a bit of a cough after his birthday, but when we visited Dr. Rosenberg a few days later for his one year check up, he said he wasn't concerned about it.  At that check up, Cayden got four vaccines.  That night, he didn't sleep very well, not totally unexpectedly.  The next day, he seemed to come down with a full-on cold.  We thought (hoped) it was just a reaction to the vaccines, but as it turned out, it was more than that and the runny nose, coughing, sneezing, fussiness, and poor sleeping lasted over a week. 

Just about the time he started recovering from the cold, he spiked a fever for a day.  I looked at the calendar:  it was eight days since he had the vaccines.  A light went off in my head, so I looked at the paperwork they gave me at the doctor's office.  Sure enough, two of the vaccines, MMR (measles/mumps/rubella) and varicella (chicken pox) said they may have delayed reactions 7-10 days afterwards.  Symptoms may include fever (check), fussiness (check), decreased appetite (check), and a rash may develop (check).  The rash lasted a few days, but the rest of the symptoms only lasted a couple, thank goodness.

And as if this weren't enough for my poor little guy to deal with, during this whole period, I think he also felt miserable from teething!  It looks like all four of his front teeth are coming in on top.  So far only one has come through, but I think the rest of them will pop through any day.  It sure is rough being one!

Although things have been tough for Cayden, things have been getting easier for mom and dad.  We weaned him off of Simply Thick a couple weeks ago, so no more messing with that!  He had his last dose of Prilosec this past weekend, so that's one less thing to worry about.  Now that he's sitting up a lot, his reflux is subsiding, and even without the thickener or medication, he hasn't been spitting up very much.  Amen for that!  We're in the process of transitioning to whole milk instead of formula, so in a couple more weeks, we won't have to deal with mixing that up anymore - just pour straight from the gallon jug!  Not to mention how much our pocketbook will appreciate not having to buy $150+ of formula every month...

We'll be seeing Dr. Rosenberg again tomorrow.  He wants to check Cayden's blood pressure - apparently, it's been elevated for some time.  He said this happens sometimes with preemies, but they'll want to do some tests if it is still elevated.  So I guess we'll see how it goes.

Happy Birthday!!

Saturday, November 19th, 2011, was Cayden's first birthday.  I can't believe we made it.  In some ways, it seems like ten years, but in other ways, it's gone by so fast.  I think I lean more toward the feeling like ten years, though.  The (permanent?) bags under my eyes, the ten extra pounds on my belly, and the multitude of grey hairs on my head support that theory! 

The day before and the day of his birthday, I was constantly watching the clock, thinking back to what was happening at that time one year ago.  Doing so brought about many tears - of happiness, relief, amazement - and a couple of anxiety attacks.  I've heard that some parents of preemies can suffer from Post-Traumatic Stress Disorder, and I can understand why.  When I think about what I went through, it brings back those feelings of  "How am I going to get through this?  How are we going to make this work?  What is Cayden's long-term outcome going to be?"  I think back to the blog entry I made months ago about juggling (See When Daddy's Away from 1/20/11.).  I feel now like I'm rid of so many of those heavy and awkward items I was juggling - now I'm down to just juggling, say, maybe three 8-pound bowling balls.  I can do that!

So on with the details about Cayden's big day!  He woke up in a good mood, as always.  Had a nice breakfast of apples, yogurt, and formula before playing with the new presents we and his Grammy Janene and Poppa Dan got him:  a toy cell phone, a Winkel ball, a Crawl Along Snail, and some pop beads.  Jamison had lots of fun showing him how to use all of them.  After another bottle and a nice long nap, we got ready for our guests.  Although we wanted to celebrate with the world for our accomplishment, we kept the gathering very small to keep Cayden's exposure to germs limited.  Besides Jason, Jamison, and me, it was just a few of our closest friends:  Laura, Becky, and Jim. 

I made a yummy "Secret Chocolate Cake" with marshmallow butter cream icing.  The secret was that it was made with two cups of pureed beets!  (You really can't tell!  The beets make it nice and moist, kind of like zucchini does for some baking recipes.)

Of course since he's only 8.5 months adjusted age, he had no idea what to do with the candles, so big brother and Mommy helped him blow them out.  But when it came to eating the cake, he figured that out right away!

Going in for the kill



The aftermath

 He really didn't make much of a mess of himself and he finished off the whole piece we gave him.  (Must be trying to bulk up for his one-year weigh-in on Tuesday!)  Oh, that reminds me...he had his first RSV shot of the season on Friday.  The nurse weighed him and he was 19 pounds on the nose!  I can't believe how BIG he is!  I mean, Jamison is only 25 pounds and a year older.  Absolutely amazing!

So back to the party...Cayden played with his balloon and entertained our guests for awhile, showing off his sitting-up-for-minutes-at-a-time skills, before everyone left. 

It was a happy, emotional day and we're just overwhelmed with joy and love for our little man.  Celebrating this milestone also made me think back and remember all the help we got from friends and family to get us to this point.  We can't thank everyone enough for all they've done and know that we couldn't have done it without your love, support, prayers, and good thoughts.

World Prematurity Day

"Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. November 17 is World Prematurity Day and when we focus everyone’s attention on the serious problem of premature birth." (March of Dimes' website)

Seeing as how today is the day set aside to honor preemies and their caregivers, I thought I should post a little something.  How about a picture of those two new teeth Cayden is sporting?

He's really enjoying his cereal--can you tell??

He's also been "picking up" on picking up bits of finger food:  puffs, Cheerios, little pieces of bread or banana.  Apparently he's meeting his fine-motor skills milestone, seeing as how he double fists stuffing food in his mouth!

Trick or Treat!

A little late, but I wanted to share a picture from Cayden's first Halloween...

It was a surprisingly mild evening - 50 degrees or so by the time we got out the door - so we decided to take Cayden with us trick or treating.  We put him in the stroller and headed out with Jamison on foot, but Cayden didn't last long.  I don't know if it was all the noise or the other kids' costumes, but he cried pretty much from the minute we got started.  Jason ended up taking him back home and leaving him with our dear friend, Laura, who came over to hand out candy for us so we could both go out with the kids.  Jason came back out to meet up with Jamison and me going door to door, and Laura said Cayden did just fine during the hour or so we were gone.  Hopefully next year he'll enjoy it more!

Two teeth!

Cayden is getting his first two teeth in!  I thought something looked a little funny in his mouth on Monday morning, but it wasn't until I stuck my finger in there to feel his gums that I knew for sure.  They're coming in on the bottom (unlike Jamison, who got his first two in on top, which is unusual!) and you can just barely see them poking through.  I'll try to post a picture as soon as I can get a good one.

It's funny - he didn't drool very much, was never really fussy, never woke up at night, nothing like how Jamison was.  I guess it's true what they say about no two kids being the same!

Home from the hospital

Good news!  Cayden came home from the hospital yesterday afternoon.  He was really tired and pooped out fairly early last night, but he slept well.  This morning, he seems like he's 1000 times better than he was at his worst over the weekend.  He sounds SO much better - hardly any wheezing or rattling and not much coughing.  He's eating and playing and seems happy to be home.

In follow up, I spoke to Nurse Gabriel at the Special Care Clinic this morning, and she said unless things change and he takes a turn in the other direction, we don't have to go back for a follow up appointment this week.  I'm hopefully that he will continue to improve! 

His big brother was so happy to see him come home yesterday...we all were!

Croup

Well, one of our biggest concerns finally came to pass.  Cayden got sick and ended up in the hospital. 

This all started about ten days ago with what I thought was a stomach bug.  Jamison had it first, then Cayden.  He had diarrhea for five or six days, and by about the fourth day, he started sneezing.  The next day, his nose started running and then came a dry cough.  By Tuesday of this week, the cough was frequent and starting to sound like that dreaded "barking seal", the hallmark sign of croup.  I had to take Cayden with me to Jamison's 2-year check-up on Tuesday, and although Dr. Stanford is no longer Cayden's primary care physician, she knows him and his history.  She confirmed that his cough sounded very 'croupy' and said I should take him to his doctor ASAP.  So when we finished up with Jamison's appointment (found out he has another ear infection), I called and made and appointment for Cayden that afternoon with a nurse practitioner at the Special Care Clinic.

The nurse, Mary Gabriel, listened to his lungs, examined him, took a pulse-ox reading (his oxygen saturation was fine) and prescribed albuterol inhaler treatments every 4-6 hours.  She didn't think it was quite croup at that point, more of a bronchiolitis or inflammation and irritation of the airway.  Since he didn't exhibit any of the most concerning symptoms like running a fever, struggling to breathe by having retractions or rapid breathing, poor color, or loss of appetite, she was hopeful that he would recover with just the albuterol, but she wanted us to come back on Friday to be checked again.  She reminded me that if he started to exhibit any of the concerning symptoms, we should come back sooner or head to the ER.

I gave him the albuterol as prescribed, but he still didn't sleep well Tuesday night.  By Wednesday morning, he sounded even worse, but still didn't exhibit any of those symptoms to be concerned about.  Wednesday was another rough night with lots of coughing.  Thursday was about the same, although his cough had changed in tone.  He went from sounding like a barking baby seal to sounding like a goose honking, then finally, he sounded like a baby elephant trumpeting.  I felt like I had my own little zoo!  When Nurse Gabriel saw him on Friday, she immediately said she didn't like how it was sounding, but again, his oxygen saturation was o.k. and he still didn't show other concerning symptoms.  At that point, she said it sounded like it was more 'croupy' and prescribed a three-day course of oral steroids.  She said he should start to show significant improvement within hours of a dose, but again, if anything changed, we should take him to the ER.  She asked if I'd feel more comfortable if they set us up with home oxygen again but I declined, saying I was reassured that he was satting well and didn't think he'd keep the cannula on anyway!

So off we went on our merry way - picked up the prescription, gave him a dose as soon as we got home, and sure enough, he seemed to be breathing better and coughing less within a few hours.  Jason came home late that night - he had been gone all week and missed hearing the progression of different sounds of wheezing, coughing, rattling, etc. - and as far as he could tell, Cayden sounded just great.  He slept quietly and didn't cough all night.  I thought the worst was over and that he was finally getting better.  I was wrong.

Since I hadn't slept much all week, Jason let me sleep in on Saturday morning.  By the time I got up and moving around 11, Jason burst through the bedroom door and said, "I need some help."  I thought maybe he was having trouble dealing with both boys at once, but as I came out of the bedroom, I realized Jamison was already down for his nap and he was just with Cayden. 

Jason was concerned that Cayden was having retractions and struggling to breathe.  My first thought was that he hadn't seen him all week and didn't know how bad he could sound, so despite the fact that Jason has paramedic and pediatric experience, I thought maybe he was over-reacting.  But as I shook off the fog of a decent night's sleep, I realized maybe he was right and that Cayden did look like he was struggling.  We gave him a dose of albuterol, but it didn't seem to help at all.  Jason wanted to take him to the ER right away.  I suggested we give him his second dose of oral steroid before he left to see if that helped.  We didn't want to wake Jamison up, so Jason wound up driving to the hospital with Cayden by himself.  I was scared that he wouldn't be able to keep an eye on him in the back seat while he was driving, but we didn't have much of a choice.

So they headed off to the ER around noon and I sat at home, anxiously awaiting any news.

Cayden was seen right away and given a dose of epi-something (epinephrine and some other drug), and it immediately helped dilate his breathing vessels.  The retractions went away and he seemed to be doing well, but they wanted to keep him there for several hours to observe how he did after the drug wore off.  He ate and slept for a bit and seemed to be doing well.  Once Jamison woke up from his nap, the two of us went to the hospital too.  By then, the medicine had worn off and his breathing starting going downhill again.  The docs recommended he be admitted and kept at least overnight so they could watch him and administer the medication again as soon as he needed it.

By the time he got admitted, transferred to and settled into his new room, it was after 8 p.m.  His new nurses and resident doctors came in and examined him.  We decided that Jason would stay there with him that night and I would go home with Jamison, so once I was sure everything was going to be o.k., I left.

He got another dose of the epi-stuff before bed last night.  Jason said he slept well and at rounds this morning, the docs thought he sounded much better.  They want to observe him some more today, but they're hopeful he'll be discharged this afternoon.  We were told that a bout of croup typically has three days that are the worst, so hopefully he is over the hump.  I'm going to get off the computer so I can call and check in to see how things are going, and will try to post an update when possible.

Hooray!!

Just a quick update following our check-up and weigh-in with Dr. Rosenberg yesterday...

Cayden now weighs 17 pounds on the nose.  The exciting thing is that he's finally managed to make it onto the growth chart without having to adjust his age!  He is in the 5th percentile for weight for 10-and-a-half-month-olds. 

Another great piece of news we got was that he can start drinking whole milk after his first birthday - in November.  I had previously been told (by whom, I can't recall, but it may have been a nurse or the home-visiting dietitian) that he needed to stay on formula until one year adjusted age, which would be February 28th.  Not only is this formula a pain to mix up, it's EXPENSIVE!  He goes through a can in three and a half days, and each can costs about $16.  Cha-CHING!  Dr. Rosenberg also said we can try taking him off of the Simply Thick whenever we want to see how he does.  If he starts spitting up a lot more, we will put him back on it, but if not, we can kiss that goodbye too.

Speaking of kissing things goodbye...the doctor also put in the request to the home oxygen company to remove the oxygen tank and equipment from our house.  He said they're terrible about following through and sometimes it takes a couple months, but nonetheless, the end is near for that too.

Cayden got a flu shot yesterday.  When they're this young, they need to get a series of two, so he'll get another one along with all of the other vaccines at his one-year appointment in November.

We've taken a couple of really cute pictures of him recently...

It looks like he's saying, "Boy, have I got a surprise for YOU in my diaper!"

Look at that belly!  Jason said he likes to show off his belly more than Shania Twain!

Good to the last drop

Cayden was ten months old as of this past Monday.  We had a meeting with all of his care providers and our Developmental Pathways coordinator on September 12th where we updated the goals for the next three months on his individualized family service plan.  Nurse Alison weighed him and he was 16 lbs. 7 oz.  Everyone is happy and amazed at his progress.  Hopefully by the time we all meet again at the end of the year to revise his goals, he'll be crawling!

As of today, we are out of breast milk.  I used up the last of it in his first bottle this morning.  I can't believe how fast we burned through that frozen supply.  All that work I did, pumping for hours and hours each day for months on end, gone.  He seems to have transitioned to formula without much of a problem and I hope he continues to do well through this coming winter.

We're all getting over colds here at the Inzer household.  I think I was the first to get it, then Cayden, and finally Jamison and then Jason.  While Cayden was sick, he had a couple nights where his nose was so stuffy, I was scared he wouldn't be able to breathe.  He was miserable, crying, and couldn't sleep, despite all the saline and suctioning I was doing.  I considered taking him to the ER at 2 a.m., but with Jason out of town and Jamison sleeping soundly, I just couldn't do it by myself.  Finally, I tried putting him back on the oxygen, just to reassure myself that he would be getting SOME air.  He still didn't sleep.  In fact, the only way he would rest was if I held him cradled in the crook of my arm, snuggled up beside me in my warm bed.  I think we both were able to get a couple hours of sleep that way, but it was a rough week.  Thankfully, he is much better now, and we made it through without having to go to the doctor.

Cayden has been enjoying more solid foods:  over the past couple weeks, he's tried apples, carrots, prunes, and green beans, although I wouldn't say he enjoyed the green beans.  In fact, I would say he hated them.  I wish I had a camera handy to capture the look on his face when I gave him his first bite!  He scrunched up his nose and gagged and tried to spit them out.  I thought he was being overly dramatic, so I gave him another bite.  And then he threw up -- not just the beans, but all of the milk and medicine that was in his stomach from earlier.  Guess he REALLY doesn't care for green beans!  But being the stubborn - or stupid - person I am, I waited a week and tried again.  Surprisingly, he wasn't as opposed to them as he was the first time.  He actually ate a couple bites, but I still don't think he likes them very much!

He has been rolling and rolling, kind of using it to locomote.  He's close to being able to sit up on his own and loves sitting on my lap while Jamison is eating.  He is just fascinated by his big brother!

Yesterday, we had a six-month follow-up visit with an orthoptist.  I had never heard of an orthoptist, but I learned that they specialize in vision alignment, so to speak.  They look for things like cross-eyes and lazy eyes, to name just a couple common conditions.  Anyway, the orthoptist said Cayden's eyes look great right now and there is no evidence of any problems at this time, so our next visit will be with the opthamologist in six months

Over Labor Day weekend, Cayden got to meet his Poppa Dan for the first time.  Jason's parents came out for a visit and both boys (and Jason and I) loved seeing them. 

It makes me sad that we live so far away from all of our family, but hopefully soon, we'll be able to start traveling and then we'll make the rounds, from Arizona to Arkansas to Pennsylvania!.

No more oxygen! (And other good news...)

It's official!  We got the word today from Dr. Rosenberg that Cayden passed the last overnight room air challenge we did a couple weekends ago, so he can officially go without oxygen all the time.  We'll keep the big ol' tank around for another month, just in case he gets sick and we need it temporarily, but otherwise, we'll be kissing it goodbye.

On August 28th, he was six months adjusted age, so that's another big achievement.  He's pretty much on track developmentally for his adjusted age.  He's rolling back and forth from tummy to back and back to tummy, holding his head up and looking around and reaching for toys while on his tummy, passing objects back and forth from hand to hand, and his trunk control is coming along.  One thing he's not doing is holding his own bottle, but I don't think it's because he can't, I think he's just spoiled!  But that's one big goal Amy Jo, our occupational therapist, has set for him, and we're working on it. 

In other news, I am done pumping.  My milk never came back after I stopped taking the course of oral steroids for my hearing loss, so I reluctantly conceded and took the pump back two weekends ago.  I cried half the drive home!  It's hard to explain to anyone who hasn't been there, but letting that go was so difficult for me. While I am thrilled to be getting some sleep again and love having those extra four or five hours in my day that I committed to pumping these last couple months (it was more like 7 or 8 hours a day during the first six months of this journey!), knowing that Cayden now has a limited supply of frozen breast milk to nourish and protect him makes me sad and scared.  We have maybe a month or two, tops, of milk in the freezer, so he'll have a good ten or eleven months of being fed breast milk, but I was hoping he'd be able to have it for at least a year, if not a year adjusted age (which would be 15 1/2 months).  I know lots of babies do just fine on formula, but he's not just any baby, and I feel like it's the antibodies he's gotten from my milk that have helped him do so well up until now.  Everyone tells me I did an amazing job and that I kept it up for so much longer than anyone would expect, and while that makes me proud, it also makes me feel like I shouldn't quit now.  But in my head, I know it's not worth the time and I hope and pray he'll continue to thrive.

Besides, he's learning to love solid foods more and more, and before long, he'll be eating steak dinners!  For now, he's quite happy with peaches, bananas, and sweet potatoes.  Tomorrow, we're going to try green beans (which was Jamison's first solid food and continues to be one of his favorite things.)  Also on the menu horizon are apples, peas, carrots, and pears.  Mmmmmm!

9 month check up

Wow.  It gets longer and longer between updates here, but I think that's a good thing!  There hasn't been much in the way of preemie news to report, and I think we're finally starting to blend onto the path where "normal" baby developments are the only new and exciting things to report!

We took Cayden to his 9 month well child exam yesterday.  He was just hamming it up and seemed so happy to see Dr. Rosenberg, smiling and kicking the whole time.  His weight was 14 lbs. 15.9 oz.  If that's not close enough to call 15 pounds, I don't know what is!  The respiratory therapist had a hard time getting a good pulse-ox reading on him because he was wiggling his toes so much.  It was kind of cute.  The doc was happy with his progress and we don't have any concerns for now, so he got a clean bill of health with orders to come back in two months for another weight check.  No shots this time, so we all slept good last night!

We're going to do one more overnight room air challenge late next week just to see how the readings come out, but Cayden hasn't been on oxygen at all during the day for several weeks, and only occasionally at night.  We were supposed to keep him on at night until the appointment yesterday, but he either pulls it off on his own while he's sleeping, or he wakes up with the cord wrapped around him three times and we get scared he's going to choke himself, so we stop putting it on for a couple days.  He did have a bit of a minor cold or something the past two weeks, so we tried to keep him on it at night, but it was kind of hit and miss.  He is always rolling over to sleep on his tummy - "scrunch butt", as we call it - and he just does not like that thing in his nose anymore!

I think he's finally gotten over his tongue-thrust reflex and figured out that eating food off a spoon is fun.  He's been really excited to eat his oatmeal cereal once a day, and I'm going to start introducing new foods very soon (as soon as I can get to the store to buy the fresh, organic fruits and veggies I want so I can cut, steam, puree, and freeze them up for him.)  Given how much he's been digging cereal, I think he's going to enjoy eating more solid foods.

A couple weekends ago, we went to the University of Colorado NICU's Preemie Picnic.  It was a grand 1950's-themed affair with a train ride, jumping castle, slides, a DJ, face painting, BBQ, cotton candy, snow cones, root beer floats, hula hoop and bubble-gum blowing contests.  The best part was getting to see some of our favorite nurses again and to show them how well Cayden is doing.  Here are a few pictures . . .

With Nurse Megan

And Nurse Carrie



And Nurse Kathy