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



Movin' and Groovin'

Cayden will be five months adjusted age tomorrow.  I haven't had a whole lot to report here lately:  he has been eating and sleeping well and there haven't been any major events.  I think we've even managed to overcome his aversion to napping in his crib, finally!  He takes one good, long nap from late morning to early afternoon, then usually takes at least another one in the late afternoon and/or early evening.  Being able to put him down in his crib and get SOMETHING done has been so nice!

In the past few days, Cayden has found his feet.  He loves playing with them with his hands and using them to kick at toys and stuff while laying on his back. 

Speaking of laying on his back, he seems to have decided that he doesn't care much for being on his back anymore and has been rolling over to his tummy on his own a lot lately.  Over the past couple of months, he had been rolling from his tummy to his back (which is easier and usually comes before back to tummy), but he didn't do it very much.  Now, he's all about rolling to his tummy!  He's even doing it while sleeping, which is sort of concerning with all of the warnings about putting baby "back to sleep" and wanting them to sleep on their backs to lessen the chance of SIDS.  I talked to the nurse at our pediatrician's office today and she assured me that if he has the strength and head control to roll onto his tummy, then he should have the ability to move his head so that he can breathe while he's sleeping.  I sure hope so!

My days of pumping breast milk may be coming to an end very soon.  One week ago, I went to bed with a slight buzz in my right ear.  Three hours later, I woke up to pump at 2:30 in the morning and could not hear anything out of that ear.  I went to see an ENT specialist that day and started a course of three steroid injections into the eardrum as well as an oral dose for three weeks.  While my lactation consultant assured me it was safe to take steroids while nursing, I'm not so sure my body agrees.  Within one day of starting the oral medication, my milk production dropped about in half, to the point where I'm barely producing enough to make one bottle's worth of milk for Cayden in an entire day.  I think it's my body's way of telling me to stop pumping, and as much as I hate to give it up, I think it's inevitable.  So I will be dropping a pumping session every few days and within a couple weeks, I think I'll be done.  It sucks, but it will be nice to have those extra hours back in my life, and now maybe I can start making up for the past eight months of sleep deprivation!

More from the photo shoot

These are some of my favorites...

Photo shoot

From June 15th, 2011, when Cayden was almost 7 months old...

Party boy

For the first time ever, we took our traveling road show to a friend's house over the weekend to enjoy a little Fourth of July gathering.  It was quite a feat getting all four of us out the door and we almost bagged the idea at the last minute due to several complications and delays, but we managed to arrive (an hour later than intended) and actually enjoyed ourselves for a couple of hours!  Thanks to Michelle for the food and fun!

Cayden has been doing well, although he's been a bit fussy when it comes time to eat lately.  We think it's a temperature thing - if his milk is too warm or too cold, he doesn't like it and will not drink it.  We've gone back to trying to introduce the donated milk into the mix, using 3/4 my milk and 1/4 of the donated milk, so we've been worried that maybe that's the problem again, but since his fussiness has been inconsistent, we don't think that's the issue.

Surprisingly, my milk supply has gone back up a bit over the past few days.  Could be the fact that I'm getting some good sleep now that Jason is home?  We'll see if it continues over the next week that he's home.

We finally got the CD with all of the pictures from Cayden's photo shoot a few weeks ago.  I'll try to post a few of my favorites here in upcoming blog entries, but if you want to see more sooner, there are several of my favorites on the photographer's blog page right here.

Well, I've been trying to upload a photo for a couple hours now and I fear that maybe the files are too large to post on here.  I'll keep trying, but for now, I'll just post this entry . . .

Newborn no more

Cayden is 4 months old adjusted age today.  With tears in my eyes, I packed away all of his newborn clothes and most of his 0-3 months outfits because they're too small.  I've been trying to kid myself and delay the inevitable by cramming him into a couple cute outfits over the past week, but he was literally bursting the seams, popping the snaps, and looking entirely uncomfortable, so I had to acknowledge the fact that he is no longer a tiny baby and forced myself to pack up the small stuff for good.

He had a follow up visit with Dr. Rosenberg today and everything checked out well.  He seems to be over his cold and is back on track with feedings.  We've been giving him a little rice cereal every other day or so too.  I don't know where it goes - if it's absorbing into his bib or evaporating or what - but despite the fact that most of it seems to get pushed out with his tongue, the bowl has been empty at the end of the "feeding".

Although he hasn't been eating as much over the past week, his weight increased since our last visit a week ago.  He's 13 lbs. 7 oz. and there was even discussion of him maybe gaining too much here lately!  He's jumped up vertically a bit on his growth chart rather than keeping a nice, steady curve.  Keep it up, I say!

The respiratory therapist did another spot room air challenge on him while we were there.  With his oxygen on, he was satting 98%; without it, he was at 95%, which is awesome.  Dr. Rosenberg also reviewed the results of his overnight room air challenge from almost two weeks ago and said it looked great.  We've had him on slightly increased oxygen continuously since he's been sick, but now we've been given the go-ahead to start weaning him off altogether.  We'll take him off for a couple hours a couple times a day, then increase to three hours a couple times a day and so on until he's off of it completely.  You can tell Cayden is ready to be done with it - while the doc was talking, he just RIPPED the cannula out of his nose.  He yanked so hard, he pulled the little tender-grip patch off one side of his skin and it left a raw spot on his cheek.  Won't be long, little man . . . hang in there!

I spent quite a bit of time during the appointment talking with Dr. Rachel Wright, a neonatology fellow who spent a lot of time with Cayden while he was in the NICU at University, about breast feeding.  In addition to being medically knowledgeable, she was very empathetic to my situation, having struggled to pump for 8 months with her own 17-month old baby. 

My milk production has dropped sharply over the past couple of weeks, due, I'm certain, to the fact that I was sick and wasn't able to get enough sleep for at least three of the past four weeks.  Cayden's interest in breast feeding has also declined.  Some days, he won't even latch - he just screams and cries.  I don't know if it's because he's not getting enough or if he doesn't have the patience to work for it or what, but it's been a struggle to say the least.  Add in the fact that I haven't been able to find the time to put him to the breast most days while Jason is out of town, and that he's been out of town more than he's been home, and I can see why he's losing interest. 

The decision I've been wrestling with is whether or not to continue pumping.  It's getting to the point now where I barely pump enough in a day to make two bottles' worth of milk and we're dipping heavily into my frozen supply.  I'm lucky if I pump 1/3 of what he needs in a day.  Trying to increase a milk supply once it's dropped is a tough thing to do and requires a huge input of time - pumping every 2-3 hours around the clock - and time is the one thing I just don't have enough of.  So increasing my supply is pretty much impossible. If I was able to pump that often, I would still be doing it and I wouldn't have this problem in the first place.

So the question is, is it worth it for me to keep spending all of this time pumping (probably a good 4-5 hours a day), not to mention continuing to deprive myself of a good, solid night's sleep, just to try to maintain such a small volume of milk?  My instinct is that it's a losing battle.  This is my body's way of telling me enough is enough.  But the thought of stopping overwhelms me with guilt.  I feel like I should pump for as long as anything comes out.

Several people have tried to help me see that I've done way more than most moms ever have, and that Cayden has flourished because of my efforts and has had the best advantage he could.  Exclusive breast feeding for the first 6 months is the standard; one year was my goal.  Cayden has had over 7 months' worth so far, and with my frozen supply, should get at least 9 months (and that doesn't include the 1 or 2 months' supply of my friend's milk we may be able to use.)  Hearing Dr. Wright tell me that I've gone above and beyond what anyone would ever expect or imagine was possible, and that Cayden will be o.k. because of all I've given him up to this point, took a little of the pressure off and made me feel like it's o.k. if I stop.  I won't quit cold turkey; I'll probably drop one pumping session a day for a week or so, then another, then another, until my body just does what it's being told to do:  stop producing milk.  It still makes me sad to think about, though.  But stopping will give me lots of extra time each day to ENJOY both of my babies, and will give me one less thing to stress about.  And if there's anything I'm sure about, it's that I can use less stress in my life!

Mirror image

Just wanted to share this picture . . .

Jamison is two months old.  Cayden is 6 1/2 months (about 3 months adjusted age.)

Seven months old and a cold

Looks like Cayden has come down with his first cold.  So much for my (unrealistic?) hope to keep him away from all germs until his immune system has a chance to mature when he’s about a year old.  At first we thought it was another episode of reflux and subsequent aspiration, but when he really started fussing while eating, showing signs of decreased appetite, getting really congested, and then not sleeping at all on Monday night, I knew it was time to take him to the doctor to have him checked out. 

So on Tuesday morning, I called and spoke to the nurse at the Special Care Clinic and she evaluated him over the phone.  I had Cayden on my chest while I was talking and she could hear him wheezing.  She was concerned and said we should definitely either bring him in there or take him to the ER.  They were able to get him in that afternoon although we saw a neonatal nurse practitioner instead of Dr. Rosenberg.  Glenda, the NNP, was awesome.  She examined him, asked a lot of questions, and did a spot room air check on him.  The conclusion was that although all of the changes in breast milk, formula, and thickener may have lead to some fussiness, and although he may have had a reflux/aspiration episode that lead to some congestion, they were still pretty sure this was the start of a cold.  The respiratory therapist added that they’ve seen several cases of bronchiolitis this month, even though the season for it typically ends in early spring, and that could well be what he had.  They told us to bump up his oxygen from 1/32 to 1/16 of a liter and keep him on it continuously and try to keep his nose suctioned out, but other than that, there wasn’t a lot we could do and we’d just have to let it run its course over the next ten days or so. 

My biggest fear since he came home has been that he’d get sick and wind up back in the hospital, but thankfully, Glenda said he should do just fine.  I guess we’re lucky that we’ve made it over three months at home and seven months total without him getting sick, especially considering Jamison has been sick so much.

Cayden hasn’t been eating as much as usual since being sick.  He had a runny nose and was coughing so much sometimes it made him scream and cry and then spit up, but it seems the worst is over.  He’s been sleeping a lot, so that makes it hard to feed him as often as we normally would, and he just doesn’t seem to have much of an appetite, so he doesn’t take as much at each feeding.  Today (well, technically now it’s Sunday, so yesterday), he took a total of 600 ccs, so that’s much better than the 450 he had been averaging during the worst of it, and not too far off from the goal of about 650 ccs we’d like him to get each day.  He’s been sleeping through the night again, so that’s a relief too.  We have a follow up appointment with Dr. Rosenberg on Tuesday, so we’ll see how they think he’s doing then.

One other change the NNP made was changing his reflux medication from Prevacid to Prilosec.  I had mentioned how Cayden really seemed to hate taking his Prevacid doses, and Glenda said that first of all, she and Dr. Rosenberg were both surprised at how low of a dose he was on and second, that sometimes babies tolerate another medicine better.  She suspected and I confirmed that our pediatrician never adjusted the dose as Cayden’s weight increased, so the amount he was getting was too little to help, and clearly, he still needed the full dose.  So she changed him over to Prilosec, increased the dose to match his weight, and it really seems to have helped with the reflux.  He still doesn’t like taking it, but it’s no worse than the Prevacid, and we’re only giving it to him once a day rather than twice, like before.

Sadly, my right-hand woman, Steene, is leaving tomorrow.  I just don’t know how I’m going to adjust to having to do it all on my own again once Jason goes back to work in a couple days.  She’s been a tremendous help these past two weeks.  Not only will I miss the help, but I’ll miss the company too.

Another busy week

A lot has happened in the past week!

Last Saturday afternoon, my friend Steene, from Arizona, came to stay with us for most of the next two weeks.  She’s been a HUGE help, jumping right in with both boys, cooking, cleaning, running errands, and even surprising me by going clothes shopping for me (since most of my clothes don’t fit right anymore, and it’s not high on my list of priorities to re-stock my wardrobe since 95% of the time, I’m home alone, often covered in spit-up or drool!)  She was here during the week while Jason was out of town, but is taking a little break over the weekend, staying and playing with our friend, Laura, until Sunday night.  She will stay through next Sunday and let me tell you, I am so grateful for all she’s done, especially considering I’ve been sick all week and couldn’t have done it without her.  It’s amazing what an extra pair of hands can help you accomplish, and how much it reduces your stress level!

On Monday, Cayden had a physical therapy session for the first time in almost a month.  Liz was so impressed at the progress he’s made in that time – he is able to hold his head steady while sitting up and during tummy time, can track objects with his eyes and head with no problem, and has started reaching for and grasping objects.  We will keep working on the reaching and grasping as well as more tummy time.

Cayden got to act like a supermodel on Wednesday when he had his first set of professional photos taken.  We had a friend of ours’ sister, Jenae Lopez, come to the house for the shoot so we wouldn’t have to take him to a germy public studio and she got some awesome shots.  We haven’t seen the proofs yet, but once we do, we’ll share a few on here.  She also said she’d post some on her blog once they were edited.  Check out her website for more.

Mommy and Daddy had a big night out Wednesday evening.  Steene and Laura offered to watch BOTH boys so Jason and I could sneak away for an early birthday dinner.  It was the first time since at least November that we’ve been able to go anywhere together without kids and it felt awesome!  Of course, we were a little nervous, but we knew the boys were in very capable hands.  And since there were two of them, they could run man-to-man defense, at least until Jamison went to bed, which was only an hour after we left.  We enjoyed our few hours of freedom and even snuck in a couple of errands.  Who would ever imagine that a trip to REI and Home Depot would feel like a vacation?!

For Jason’s birthday on Thursday, we spent the afternoon seeing one of Cayden’s old University NICU attending physicians, Dr. Rosenberg, at the Special Care Clinic at Children’s Hospital.  This is the clinic we were hoping to get into for his new primary care, but with the help of a very caring nurse named Barb (who just happens to be the mom of one of our favorite University NICU nurses, Katie – small world, eh?), we came up with a plan to keep the best of both worlds.  We’ll see Dr. Rosenberg periodically for all things preemie.  They’ll tell us when to wean him from his oxygen and thickened/fortified feeds.  They’ll keep close tabs on his growth and reflux.  They are the experts on these things and have the latest information at their fingertips on things like the Simply Thick issue.  They will communicate with our primary care pediatrician, Dr. Stanford, and keep her informed of their recommendations for Cayden.  We will keep seeing Dr. Stanford, whose office is much closer to us and much more accessible in a pinch, for things common to all babies like well-child visits, vaccinations, colds, rashes, etc.  Eventually, once Cayden catches up to his peers around age two or three and no longer needs the specialized medical attention from the Special Care Clinic, we will transition back over to seeing Dr. Stanford exclusively.  We are happy with this arrangement and know it will be most advantageous for Cayden’s development.

As for the actual appointment, Dr. Rosenberg was thrilled at Cayden’s progress since leaving the NICU.  His weight (13 pounds even!), height, head circumference, and developmental milestones are right on track for his adjusted age.  They did a spot room air challenge on him and his sats were great, so they recommended taking him off his oxygen for a few hours a couple times a day to start weaning him from it altogether. 

We met with a dietician who analyzed his caloric intake and gave us the latest scoop on thickening:  Simply Thick packets were recalled because it was found they were not being sterilized during the manufacturing process and that’s what contributed to the development of necrotizing enterocolitis in the three babies who died.  The product is also available in a pump (which was not affected by the recall), so that’s what we’ll be switching to.  Obviously, with all the recalled packets, pumps are in high demand and short supply, so she made arrangements with a home health care company to deliver a pump to us as soon as one becomes available.

 The dietician and Dr. Rosenberg both told us to start giving Cayden a spoonful of rice or oatmeal cereal every day to get him used to the feel of solid food in his mouth.  The good news is that being on solid foods also helps control reflux, so that’ll be welcome relief.

The appointment took about two hours, but we left there feeling so comforted and secure knowing we have preemie experts back on Cayden’s team who we can call any time with questions or concerns.  I think we’re back on the right track!

Thursday evening, we picked up a bunch of frozen breast milk from a friend of ours who wasn’t able to use it with her baby because she didn’t tolerate it for some reason.  Our friend donated about half of it to a milk bank but was kind enough to ask us if we wanted some.  I figured it would be a godsend to have some extra supply in the freezer.  It would take some pressure off of me trying (and currently failing) to keep up with Cayden’s demands and might mean that I could stop pumping a few months earlier than I otherwise would have.

After consulting with our doctors and making sure the screening tests all came back clear, we happily and gratefully accepted as much as we could pack into our freezer.  We started Cayden on it that night, but now we’re worried that maybe he’s not tolerating it either.  Our first clue that something about it is different was when we tried to thicken it with the same amount of Simply Thick we use with my milk and it didn’t do much.  We had to bump it up to ½ strength instead of ¼ strength to get it to a similar consistency as mine.  Cayden has been very fussy while feeding with her milk, even to the point of refusing to finish a bottle.  He writhes and cries and just can’t seem to get comfortable.  At first we thought maybe it just tasted different, but then we noticed he’s been super gassy, which he normally is not.  So as of this evening, we started an experiment – we’re going back to my milk to see how he tolerates it for the next 24 hours.  If he goes back to doing well, we’ll give him one more bottle of the other milk and see how he does.  If it turns out that he can’t tolerate this gifted milk, it will just break my heart to tell our friend.  She worked so hard to pump all that liquid gold!  Hopefully the milk bank will still accept it if we can’t use it. 

Friday night, we did another overnight room air challenge.  Neither of us got very much sleep because the monitor kept alarming all night long, but we’re pretty sure it was because the sensor wasn’t picking up well at those times. Both Jason and I think Cayden did really well, but we’ll have to wait until at least Monday to find out.  We’re keeping our fingers crossed that maybe he can come off of the oxygen for good very soon!

A lot to swallow

By some stroke of luck or major miracle, Cayden had a swallow study done on Tuesday.  I'd been trying to get a hold of someone at the Swallow Disorders Clinic at Children's Hospital since last Friday.  After a couple days with nothing but voice mail and no return phone calls, I got through to a live body on Monday.  The live body told me they would email me a packet that I'd need to fill out and return, then someone would review it and eventually call me back to schedule an appointment if they determined we actually need their services. At that moment, their first available appointment wasn't until late August, over two and a half months from now.  So who knows how long it would have been if I just settled and said "o.k." 

Persistence and a few tears seem to be the key to getting help sooner rather than later!  Because of the issues Cayden has been having with the Simply Thick, I didn't feel like we could wait that long, so in frustration, I broke down, started crying, and asked if there was any way they could expedite the process and get him in sooner.  At that time, the live body said she was sorry, but she didn't think so, but offered to put me through to her supervisor.  Yes, PLEASE!!  I got supervisor's voice mail and my hopes were dashed, but I left a message anyway. 

Tuesday morning, Jackie, the lead person in the Swallowing Disorders Clinic, called back.  She was very empathetic.  She listened to my story and gave me great advice and up-to-the-minute information about the Simply Thick issue, but unfortunately, she didn't think she could get us in for a swallow study until August.  At that point, I was pacified by having some reassurance that continuing to use Simply Thick was o.k. in Cayden's case and I wasn't as concerned about having the study done immediately.  Jackie said that since Cayden was so young, she'd put our name on the urgent list and if something opened up, they'd let us know.  Less than two hours later, the phone rang.  They had a cancellation and wanted to know if I could come in for an appointment at 2:00 that day!  I wasn't sure how I was going to swing it on such short notice - Jamison had just gone down for his nap and hadn't eaten lunch.  I hadn't taken a shower in three days.  I had to get all of Cayden's milk prepared so they could use it in the study.  I had to pump.  I had to eat something.  But amazingly, and with the help of our savior daycare lady, Mayra, I pulled it off.

The swallow study was kind of cool.  They mixed my breast milk with barium, sat Cayden in a little seat, I fed him the bottle, and they pummeled him with continuous x-rays and watched the milk travel its path on a real-time image display.  The good news is that he is not aspirating while consuming thin liquids.  The bummer is they can’t ever determine if he may be aspirating later, if things come back up with his reflux.

The appointment was well worth the time, though.  I got to sit and talk with Jackie and another speech therapist for a good hour or more.  Both of these ladies have extensive experience with swallowing and Simply Thick and preemies.  They have been keeping constantly updated on the Simply Thick/FDA issue.  The bottom line is that Cayden should be fine to continue on Simply Thick, especially if we’re only using it at ¼-strength.  The FDA warning says that children currently in the hospital or who have been discharged less than 30 days should stop using it. Because Cayden has been home for three months now, he’s proven that his system can tolerate it and he’s past the age for being at risk for necrotizing enterocolitis.  So the recommendation from Jackie is to continue to manage his reflux with ¼-strength Simply Thick and then in a couple of months, once he starts being able to sit up on his own, we can try weaning him off of it altogether without worrying that he might aspirate. 

I’ve been trying to type this update for three days now, but just haven’t had a chance to finish.  Jason came home at midnight on Wednesday night and is leaving again in a few hours, so I’ve been running ragged for the past six days and now I’m trying to catch up on everything in the mere day and a half he’s home before leaving again for another five days.  But at least now everyone has the latest info:  we finally got a swallow study done and Cayden seems to be doing well again now that he’s got a little thickness back in his milk!

Million Dollar Baby

The bill came today for Cayden's 111 day NICU stay:  $779,996.23.  That's over three-quarters of a million dollars!  Honestly, it's less than Jason and I thought it would be.  All I can say is THANK GOD for our insurance!  The insurance write-off was over half a million, so they ended up forking out right around $250,000.  Our copay was $1000, but the secondary Medicaid insurance automatically granted to all preemies born weighing less than 1000 grams (Cayden was 910 grams) took care of that.  Amazing!  We are so grateful.

In other news, we had a very frustrating night last night.  We went to mix up our first batch of milk using Thick-It while Cayden was screaming hungry at 11:15 p.m. only to find out it doesn't work with breast milk.  The vague directions on the can said to use 2 to 3 teaspoons in 4 ounces of liquid.  By the time we got up to 5 teaspoons in just 3 ounces with no effect after a half hour of waiting, we gave up.  We threw those three ounces of "liquid gold" down the drain and went back to using half-strength Simply Thick, even though we've been told not to. 

I was up until almost 2 in the morning researching things and found that breast milk has an enzyme called amylase in it.  The job of amylase is to break down starches.  Thick-It's ingredient list:  modified corn starch.  Nothing else.  Duh.  I am angry and disappointed that our pediatrician didn't know this or couldn't figure this out herself.  During my research, I could find no other options for thickening breast milk except for one product called GelMix, but it looks like it's only been available for a few months.  Their website was sketchy and I couldn't find any credible references about the product's efficacy or safety, so I'm not sure I want to go there. 

This morning, I spent hours on the phone.  I called the folks at Thick It, Simply Thick, the lactation specialists at the University of Colorado NICU, the Special Care Clinic at Children's Hospital, and our pediatrician's office.  I had to leave a message at Simply Thick and hope someone will call me back soon.  But the other phone calls resulted in conversations with several nurses, a speech therapist, and our old developmental therapist from the NICU.  No one will come right out and say it (because of liability issues, I'm sure), but the feeling I got from most of the people I talked to is that Cayden is old enough now that he shouldn't be at risk for developing necrotizing enterocolitis, and because he's been on Simply Thick for so long without any issues, he should continue to do okay on it.  One person told me what I've been feeling all along:  as the parent who knows him best, I have to make an instinctual but educated decision to do what I feel is best for him.  My instincts tell me he should be fine on the half-strength Simply Thick, but I don't know if I could live with myself if something happens because I let him continue on it.

Ironically, late this morning, the doorbell rang.  It was the postwoman with a certified letter -- from one of our former attending physicians at the University NICU telling us about the issue with Simply Thick and advising us to stop using it.  The letter said to contact our pediatrician for advice on what to do.  Hmpf.  I already know our pediatrician doesn't know what to do!  But I called anyway.  First of all, the nurse said the doctor was surprised that the Thick-It didn't work for us.  When I explained why it didn't work, she didn't seem to understand.  (It's simple science, lady!) Then, as a last alternative, she said we could try thickening with rice cereal.  Dumbfounded, I again explained that breast milk has an enzyme in it that breaks down starches and that rice is another starch.  Even any baby's first year book tells you that you can't thicken breast milk with rice cereal!  Sheesh!  It really scares me that they just don't seem to understand simple things!  So in the end, I told the nurse that we were going to keep using half-strength Simply Thick and that was that.  Hopefully I'll hear back from the people at Simply Thick to get the facts directly from the source so I can feel better about my decision.  What makes me feel comfortable with my decision right now is that fact that Cayden is sleeping comfortably and hasn't spit up since since we put him back on half-strength Simply Thick.

Simply Frustrating

This whole Simply Thick ordeal has been a real pain - literally for Cayden, as his reflux has been terrible since we took him off of it altogether.  We were encouraged at the beginning because he tolerated the half-strength well for three days and did just as well with the quarter-strength for the next three days.  But once we dropped the Simply Thick completely as of this past Sunday, he's been suffering and struggling.  He coughs constantly and spits up half of what he eats.  We have to change his (and often our) outfits several times a day because they're covered in spit up!  The coughing wakes him up all throughout the night, so he's not sleeping well.  He just can't seem to get comfortable.  So it was a long three-day weekend waiting to check in with the doctor's office this morning.

When I reported to the nurse how Cayden didn't seem to be tolerating his feeds since eliminating the Simply Thick, she asked if I thought we needed to be seen by the doctor.  I said, "What I think we need is an alternative to the Simply Thick."  Late last week, I had asked about using another product recommended by our Occupational Therapist and Services Coordinator called Thick-It, or perhaps rice to thicken his milk.  At that time, the nurse said that the doctor wanted Cayden off of the Simply Thick right away and that she thought he was big enough now not to need a thickener.  Funny, because the last time we saw her just a few weeks earlier, she had said, and I quote, "he will need to be on the thickener and Prevacid for a long time".  Now all of a sudden he doesn't need anything?

The nurse said she'd talk to the doctor and when she called back a few minutes later, she said the doctor wants to put him on Thick-It and ordered a swallow study.  We've been bugging her about doing a swallow study for MONTHS, and I specifically asked about doing one before we just pretty much cold-turkey quit the Simply Thick.  But once again, I was greeted with irritation and annoyance by the nurse at my harping about doing a swallow study and was told it wasn't needed because he was on the thickener for his reflux, not for aspiration problems.  Um, hello??  If his reflux is severe enough to bring it up and out of his mouth, he runs the risk of aspirating!!  The thickener is weighing the milk down so that it doesn't come up as easily - I knew without it he'd become a geyser and sure enough, that's what's happened.  Now he's congested and rattly and his nose is constantly full of snoogies. 

When I asked how to prepare the Thick-It, the nurse responded, "As per the package instructions."  I asked if that would be comparable to the full-strength Simply Thick or half-strength or what.  She again said, "whatever the package says."  At that point, I just hung up the phone.

Unfortunately, we're at the end of our rope with our current pediatrician and these recent "orders" are too little, too late.  I don't know if it's because they don't have experience with preemies and their issues or if the nurses are just sick of relaying my messages and questions back and forth to the doctor (99 times out of 100, I have to talk to the nurses because the doctor is busy), but we just don't feel good about the advice we're getting.  At least twice, when I asked specific questions, the nurse's response was "do what you think is best."  If I knew what was best, I wouldn't be seeking your professional opinion!

On Friday, I started researching other recommendations and options.  My first choice is the Special Care Clinic at Children's Hospital - I spoke with a nurse there and she said it sounded like their practice was where we needed to be, but there is a specific person I need to speak with who screens potential patients and makes the final determination of whether or not they will be accepted.  I left voice messages Friday and again today and still haven't heard back - more frustration!

When Jason went to pick up the Thick-It prescription the doctor had supposedly called in to our pharmacy, he was told they didn't have it in stock and that they'd have to get it from another location.  So Jason and I made the decision on our own (and maybe AMA - against medical advice) to go back to half-strength Simply Thick until we can get the new stuff tomorrow.  At this point, I feel like we know what's best for Cayden and have his best interests in mind.  Sadly, I'm not sure I can say the same about the staff at our current pediatrician's office.

So as of 4 p.m. today, we've been giving Cayden half-strength Simply Thick and he hasn't spit up since.  The damage has already been done with the likely aspiration, so he continues to cough, but hopefully we'll get him back on track and feeling better soon.

Busy week

Lots of appointments this week!  On Monday, we took Cayden in for his 6-month vaccinations.  Poor little bubba!  He squealed and cried when they stuck him (twice at once, then once more) but within maybe thirty seconds, he slowed to a whimper then stopped altogether.  I think I cried longer than he did!  They also did a weight check on him while we were there:  he was 11 lbs. 8.8 oz.

[Side note regarding Jamison:  we took him with us to see the doctor at the same time we took Cayden because he is still coughing and snotty.  I thought maybe he had another ear infection and with all these times he's been sick over the past eight months, we just wanted to be sure.  She thinks he may have asthma and/or allergies to something (seasonal?  cats?)  Although that's not what we want to hear and have to deal with, we're hopeful that maybe once we start treating him, he will finally feel better.  So we stopped by the drug store on the way home so we could give some more money to the pharmaceutical companies and came home with two inhalers and a nasal spray.]

On Sunday evening, a friend and former co-worker of mine who currently has twins in the NICU alerted me about a warning the FDA had just issued about Simply Thick (the thickening agent we're using with Cayden's milk.)  The FDA has received reports of fifteen cases, two of which ended in death, of necrotizing enterocolitis (a condition where intestinal tissue becomes inflamed and dies) linked to preemies who were being given Simply Thick.  The warning says to immediately stop giving Simply Thick to infants born before 37 weeks gestation.  (For anyone who may want to read the warning for themselves, go to the article here.)  So while we were at the doctor's, we asked what we should do.  She wants us to stop using the Simply Thick ASAP.  Problem is, we were told at the NICU that weaning from Simply Thick should be a slow, gradual, closely-monitored process.  Our pediatrician doesn't think it's worth the risk of weaning him slowly - she wants him off it right away.  So as of Monday, we cut back to half-strength and if he continues to seem to tolerate the change, we'll drop down to 1/4-strength.  I'll check in with the doc on Friday and if he's doing well, we'll probably be off of it completely by the weekend.  It's terrifying to think he's been on this for the past four months or so and what could/could have happened.  The warning is a bit vague and open for interpretation, so it's hard to know for sure how much risk he's been at all this time and possibly in the future.

As if that wasn't enough excitement for one day, we rushed home from the doctor's office, dropped Jamison off at daycare, rushed home, then Jason left for St. Louis while I met with our care team (our Developmental Pathways coordinator, Vicki, our home health nurse, Alison, our occupational therapist, Amy, and our physical therapist, Liz) where we reviewed and revised Cayden's service plan goals.  It was great having everyone together and I really feel like things are on a good path for him to reach his full developmental potential.  These ladies all care about Cayden and do so much work to help him.  Amazingly, all of their services are provided at no cost to us through the county.  We feel so lucky to have them!

Monday evening, I got some help and dinner delivered courtesy of my friend and former co-worker, Ashley.  She brought us dinner and stayed for a few hours to help with the boys.  I so appreciated it and was immensely grateful for the help, especially considering the rest of that night was really tough -- once again, I think the vaccines bothered Cayden enough to make him fussy and he didn't sleep much all night.  I got a total of less than two hours of sleep.  Add to that the change in the consistency of his milk (he didn't seem thrilled with the change and I had to watch closely to make sure he didn't choke and aspirate on the thinner liquid) and the fact that we also dropped back down to 24 kcal that day, and it was just a recipe for fussiness!  I think he was achy, hungry, and possibly suffering from more reflux for a good 24-48 hours. 

He seemed to improve throughout the day on Tuesday and by Tuesday night at 11, I couldn't even wake him up to give him one last bottle.  He slept from about 9 p.m. until 8:30 the next morning!  Jamison woke me up at 7:15 this morning and I raced into Cayden's room in a panic thinking something must surely be wrong for him to sleep that long, but when I went in his room, I found him sound asleep (and still breathing!)

Today was his surgery follow-up appointment.  Dr. Bruney checked him out and declared him all better!  He still had steri-strips on one of the incisions, so she pulled them off to make sure it had healed.  The scars are barely noticeable.  She said there is only a 1% chance of the hernias recurring later in life, which I think she said is about what the risk is in the general population.  So that's one more preemie hurdle behind us.

He seems to be over his fussiness today and is feeding well.  I gave him a bottle around 6:30 this evening, held him for a half hour then put him in his bouncy where he fell asleep while I fed Jamison dinner, gave him a bath, put him to bed, pumped, and started typing this entry.  It's now almost 10 p.m. and Cayden is still sound asleep!  Think I'd better go check on him again and try to get one last bottle in him before I put him down in his crib for the night.  Here's hoping for a good night's sleep for everyone in this house!

Six month bummer

Cayden was six months old as of yesterday but will be on oxygen for at least awhile longer.  The doctor finally called this evening after reviewing the results of his overnight room air challenge from Wednesday night.  According to her calculations from the data provided from the oxygen company's monitor, Cayden spent about 25% of the time he was being monitored below the threshold of 87%.  I was surprised it was that much - I know the thing alarmed a lot the first hour or so, but I was also fiddling with the lead, trying to get it securely attached to his little foot.  I tried explaining that to the nurse who called to give me the decision, but since I didn't keep a minute by minute record of every little thing he did during those hours, she couldn't just write it off.  It went off half a dozen or so times throughout the night while I was sleeping, but never long enough for me to get up out of bed to make sure he was o.k. - his saturation always came back up on its own. 

The doc said we can take him off during the day when he's awake and just put him on the oxygen while he's sleeping or napping, but honestly, taking the cannula off and on that often is too much of a hassle, and we can't just leave it in his nose because it blocks his nasal airflow without providing any extra oxygen and it also gets condensation in it if there's no air flowing, which can lead to bacterial growth.  So for as much of a pain as it is to drag the 50-foot cord around all of the time, I think it's easier than dealing with taking the cannula off and putting it back on multiple times a day.  I am really bummed about it and I'm sure Cayden's not too thrilled about still having that thing in his nose all the time.  I guess we'll try again in a month or so and see how he does.

In other news, we had another visit from Alison, our home health nurse, today.  She weighed him and he is now 11 lbs. 5 oz. which is still right at the 25th percentile.  He is also still right on track with his developmental milestones.  She pointed out that she thinks he's going to have a dimple in his chin and cheeks.  Nonna Lena said the same thing about his cheeks, so we'll see!

Healing well

I guess it's good that I don't have a lot to say here lately.  Cayden has been healing well since his surgery.  I can't believe it was a week ago!  The days just fly by, especially when Jason is gone.  As for Cayden, he seems to be back up to full speed as far as eating and sleeping.  He still has steri-strips over the incision sites for his hernia repairs, but those should come off on their own in the next week or so.  The edges are already starting to peel up.  His circumcision is healing nicely as well.  Through all of this, he never seemed to have very much pain, which I am eternally grateful for!

We've had him off of his oxygen during the day since he's been home and only hook him up at night.  We will be getting the pulse-ox machine on Wednesday to do the overnight room air challenge on Wednesday night.  The oxygen company will come back the next day to pick up the machine and download the data collected from the study to send to our pediatrician, then she'll notify us of the final results.

Other than that, we've just been trying to keep Cayden healthy, which has been a logistical challenge seeing as how Jamison is sick yet again.  So far, Cayden has been o.k. although he seems to be a little snuffley lately.  I think it's just another episode of reflux, though.

Cayden smiling at his big brother

Big happy face!

Home again

We came home from the hospital yesterday evening and things have been going well.  Cayden doesn't seem to be in too much pain, at least not more than a dose of plain old Tylenol can't remedy.  He's sleeping, eating, peeing, pooping, and smiling, so I'd say all systems are functioning!

We stayed at the hospital a little longer than I originally wanted to so we could try to collect data for a room air challenge while they had him hooked up to a pulse-ox monitor.  He was taken off of his oxygen at 9:00 in the morning and stayed off until we left around 4 p.m. and he had no desats or issues whatsoever!  They gathered data while he was eating, napping in his crib, cuddling on momma, and sitting and snoozing in his car seat.  The only thing they didn't cover was a period of time at night while he was in a deep sleep in a crib.  So for now, we got the o.k. to take him off of his oxygen during the daytime while he's awake, which is awesome!  Our pediatrician is setting up a time next week to have a pulse-ox monitor delivered to our home so we can do the night time portion of the challenge.  If he passes that, we can get rid of the oxygen altogether.  Based on how well he did at the hospital, I'm sure he'll do great and I can't wait to kiss this big tank and stupid 50-foot cord goodbye!

Cayden will take it easy the rest of this week - no physical or occupational therapy appointments until next week.  We have a follow up appointment scheduled with the surgeon in two weeks, so she'll check him out and hopefully this bump in the road will be over with.

Surgery success

I only have time for a super-quick update as I am at the hospital.  This is the first moment I have been able to put Cayden down, but I'm pretty sure he's going to be waking up any minute to eat one last time before bed and I need to mix up his milk.

The surgery went well.  The anesthesiologist was able to do a spinal and epidural, so we avoided having to put him through general anesthesia.  Dr. Bruney repaired the inguinal hernia on his right side and when she took a peek at the left side, determined it was herniated enough to warrant repairing.  She also did his circumcision, all without incident. 

Things have been quite stressful and disorganized since we've arrived in the patient room.  I don't have time to comment on all of the problems, but suffice it to say that I am extremely disappointed in Children's Hospital.  No hot water in the room, didn't have the proper oxygen regulator for Cayden's settings, a towel rack that crashed to the ground when I placed a dry washcloth on it, unable to get his meds until 10 hours after we arrived, nothing for Cayden to wear, no fridge or bottle warmer in the room . . . this would be so much easier if we could just go home.  Hopefully we'll be to get some sleep here soon and will be able to get out of here in 12 hours or less!

Six month check-up

It’s been a long week – Jason has been gone since Monday, so I haven’t had even a moment to update things, and now, to make it even more difficult, we’re having issues with our wireless router, so I can’t access the internet on my laptop!

We had lots of good news at Cayden’s 6-month well-child checkup on Monday.  He put on a few more ounces and weighed in at 10 lbs. 5 oz. which puts him right at the 25^th percentile, quite an increase from the 10^th percentile he’s been stuck at.  Dr. Stanford was so pleased with his weight gain that she gave the go-ahead to drop him down from 26 to 24 kcal supplementation.  Plain breast milk (straight from the tap, so to speak), is about 20 kcal, so the next step down will be to 22 kcal and then the next time we drop, it will be to plain breast milk.  He still needs the Simply Thick to help with his reflux, so I’ll still have to pump, thicken, mix, and then feed him from a bottle, but at least we won’t have to buy formula anymore.

In response to his steady weight gain, the other huge, exciting step that we are now allowed to take is letting Cayden feed at-will during the night.  Instead of making sure to wake him up every four hours, we can let him sleep as long as we wants.  The idea is that he should be able to take in enough calories during the day to be able to sustain himself for a longer period overnight.  We just have to make sure we stay on top of feeding him every three hours or so during the day so he does get enough.  That first night, Monday, he went almost six hours between feedings.  Tuesday night, he went almost eight hours, then Wednesday and Thursday, he went over NINE hours!  I was kind of freaked out that it was too long, but when I did the math and added up the total amount he took in over the 24 hour period, it came out to right in the ballpark of what he was taking in before.  And I am in HEAVEN getting to sleep four or five hours in a row!  (I still have to pump once in between there somewhere, but I’m trying to do it right before going to be at midnight or so and then sleeping ‘til he wakes up at 5 or 6.)

The doc was also happy to see how well he’s doing overall, developmentally.  He is right on track for his adjusted age of about two months.  She is going to ask the docs at Children’s Hospital to do a room air challenge while he’s there for his hernia repair surgery this Monday.  If he passes, he should be able to come home without oxygen!  That will be a huge milestone!  At the very least, we’re hoping that maybe he can cut back to only having to be hooked up at night while he sleeps.  Let me tell you, we are ALL looking forward to not tripping over/dragging around/yanking when it gets stuck/tangling up in that stupid 50 foot cord anymore!

Cayden had another session of occupational therapy with Amy on Wednesday.  Unfortunately, the timing worked out that he was due to eat right during his appointment hour, so he was hungry and not very happy about having to “exercise”.  The good news is that because she is an occupational therapist, part of her job is to assess his feeding skills.  She did some exercises with him then fed him a bottle and was quite impressed with his suck/swallow ability.

On Friday, we had our first meeting with the physical therapist, Liz.  I really liked her as well and she did a great job working with Cayden.  A lot of what’s done for physical therapy at this stage of development overlaps with occupational therapy exercises, so it was a lot of the same:  tracking with his eyes and head, lifting/turning his head during tummy time, holding his hands in midline.  As everyone seems to be, Liz was also impressed with his abilities and progress since we met with her supervisor just a couple of weeks ago.

Now the big focus is on Cayden’s hernia repair surgery on Monday morning.  I can’t believe it’s almost here.  It seemed so far off when I scheduled the appointment two months ago.  It’s starting to sink in what’s about to happen and I feel flutters of anxiety and panic if I let myself think about what he’s about to face.  Hopefully it will all go smoothly and he won’t suffer too much.  I will try to give an update from the hospital when possible.