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.

Sack o' potatoes

Cayden has broken the 10 pound mark!  As of yesterday, he weighed 10 lbs. 3.5 oz.  Seems he is finally starting to pack on the weight.  The home health nurse who came to check on him yesterday said he is at about the 25th percentile in weight which is a significant jump from the 10th or so percentile he's been hovering around up until now.  That is what we want to see!  She also did a developmental assessment called an ASQ (Ages and Stages Questionnaire) for 2 months, his "adjusted" age.  Surprisingly, he is way ahead of schedule on gross motor development.  He is also right on track for fine motor and personal/social development.  For communication and problem solving, he is at the upper end of the "provide learning activities and monitor" region, which is absolutely fine. 

We also had our first session with the new and much improved occupational therapist, Amy.  She spent about an hour down on the floor with him, working on his three main exercises:  tracking with his eyes and head, bringing his hands to his midline, and holding his head up during tummy time.  He did well and got quite a workout.  She even commented that he was "showing off" a time or two!  Now it's our job to work on these exercises every day until we see Amy again next week.

My favorite development over the past couple of days is that Cayden has started cooing.  He really responds and engages when you get up close and talk to him.  It just melts my heart!

Jason just got his schedule for the month of May and it doesn't look good:  he only has 10 days off all month (he was told he would always have 12-14), and his trips are all four and a half or five days gone with a day and a half or two off in between.  He is not looking forward to it and neither am I.  The only exception is a stretch of four days off during the time of Cayden's hernia repair surgery (May 9th.) 

On Monday, Cayden has his 6-month well-child check up, so we'll see what the pediatrician has to say.  Our big hope is that we'll be able to get a monitor to do a room air challenge to see if maybe he can come off of his oxygen.

Five months old today!

This was supposed to have been uploaded on April 19th but for some reason, it never got published!

What a difference!

Yesterday we met with two therapists from a new home care company and they were SO much better than the other lady we had for two weeks.  The two women who came to our house yesterday were the supervisors of their respective departments:  occupational and physical therapy.  They come out initially to gather information and evaluate the patient, then assign a permanent therapist who will be working with Cayden in the weeks and months to come.  Both of them were impressed with how well Cayden is doing.  (Seems we keep hearing that from people and it's so reassuring!)  They said they see the case history on paper and go to the first meeting with a mental image in their mind about how the patient will be, so they expected Cayden to be a lot worse off than he actually is.  They examined him, worked with him, and talked to Jason and me about the plan for his care.  We are really excited about moving forward with these new therapists!

 In other news, I was going to try to do an update on Easter Sunday, but I didn't have a single second to spare, and the title wouldn't have been very nice:  I was thinking of calling it "(Cr)Happy Easter".  My grandma came down with what we think was a 24-hour stomach bug early Easter morning and she was completely miserable and out of commission all day.  Jamison threw up during his nap and I thought for sure he had it too, but thankfully, it was an isolated incident, maybe related to the feta cheese I gave him at lunch that I don't think set very well in his stomach.  Even the cat threw up a hairball that afternoon, which he doesn't do very often!  Cayden and I were the only ones who escaped unscathed, but needless to say, we didn't have much of an Easter celebration that day. 

Nonna Lena recovered just in time to hold Cayden one last time before going home Monday afternoon.  Aside from not enjoying feeling so miserable, I think she was upset she missed out on her last full day of baby snuggle time.  We sure enjoyed having her here to help us for a few weeks and we miss her already!

Catching up

Yikes!  It's been over a week since I've updated things here. 

First off, Cayden seems to have overcome whatever it was - aspiration, infection, cold - that plagued him all last week.  He still sounds a little snuffly now and then, and we still retrieve some yellowish snoogies from his nose once or twice a day, but I think the worst of it has passed.  Thank goodness!  It took him most of the week to slowly get better.  Progress was so slow, in fact, that we called the doctor every other day it seemed to see if she thought we needed to come back in so she could to check him out.  Thankfully, Jason was home for a few days during the past week so he could pull out his stethoscope and take a listen whenever we were concerned, and we didn't have to return to the doctor.

Two side notes regarding Jamison that also compounded the stress of last week:  he had a fairly severe allergic reaction after eating one of my grandma's cookies.  We suspected walnuts and a blood draw confirmed it:  he is allergic to walnuts.  Besides that, he's been sick with colds and fevers twice in the past three weeks.  He had his 18-month check up last week and that's when the doctor informed us he had an ear infection.  So we've been treating him with antibiotics and he's finally starting to feel better.

On Monday this week, the occupational therapist came to the house again.  Her first visit was last Monday, the day after Cayden came down with his 'episode'.  I didn't get a good feeling from her that first visit, but I chalked it up to the circumstances and thought I'd see how things went this week.  Well, it didn't take me long to figure out that I definitely don't like her.  For one, she hasn't even touched him yet.  How are you supposed to provide therapy without touching a patient?  And the kicker was when she called him "Camden Inez".  How rude!  In addition, she kept talking about his g-tube (which he doesn't have, and never has had).  After two weeks, she doesn't have a clue about him, his history, or even his name for crying out loud! She contradicts herself constantly and I'm always having to correct her.  That doesn't give me any confidence in what she tells me to do, so I don't trust her.  After she butchered his name, I was so annoyed, I just wanted her out of my house.  As soon as she left, I called Vicki, our service coordinator, with the intention of asking for a new occupational therapist, despite the fact that it took us over a month to get this one.  I had to leave a voice message and wasn't able to speak with her until Tuesday.

On Tuesday when I talked to Vicki, the first thing I asked was what should I expect from our occupational therapist.  It crossed my mind that maybe I didn't fully understand what her scope of responsibilities is and sure enough, I was expecting too much out of her.  What we figured out during that conversation was that Cayden also needs to be seen by a physical therapist, a speech therapist, and a nutritionist.  So we set up a meeting for Wednesday to amend our service plan.  The fact that our current occupational therapist didn't seem to be up to speed with Cayden (not Camden) and his situation was still unacceptable, so we decided to get rid of her and put in a request for someone new.

Vicki came to our house on Wednesday morning.  It was the first time we met her in person and it was nice to finally be able to put a face with the person who is doing so much work on our behalf.  We amended our service plan:  Cayden will now be seeing an occupational therapist twice a month, a physical therapist twice a month, a nutritionist once a month, and a speech therapist as needed to monitor his reflux.  Hopefully all of these people will be pinned down and confirmed soon so we can stay on track with meeting his developmental goals.

Wednesday afternoon, I had to go to the pediatrician's office to be trained on how to use the EpiPen we had to get for Jamison.  I decided to take Cayden with me so we could weigh him.  The little chunker weighs 9 lbs. 6.7 oz!

It's noticeable how much stronger he's getting.  When we burp him, he fights us when we try to tip him forward.  He puts all his weight on his legs and stands up straight rather than let us bend him forward.  When I hold him on my shoulder and walk around the house, he holds his head up and looks around at things.  He loves overhead lights!  When he's lying on the changing table, he now turns his head to look at the jungle animal wallpaper border that's at his eye level.  He seems captivated by them.  He smiles a lot (and it's not just gas!)  He seems so delighted when I look him in the eye and talk to him.

Last night after changing his diaper, I put him on his tummy on the floor for a bit of tummy time while I ran to the bathroom to wash my hands.  When I came back 30 seconds later, he was on his back!  I couldn't believe my eyes and exclaimed, "What the??!  How did you get there??"  I just couldn't believe he had rolled over on his own.  So I laid him back on his tummy with his elbows propped up and dang if he didn't roll over right in front of my eyes!  I guess you can say things with my little man are just rolling along!

New pictures

I've finally added a few recent pictures.  There are two new ones on the right under "The latest pictures of me", and I added a couple in the previous entries "An extra pair of hands" and "Nonna Lena".

Oh, and one - make that two - for good measure . . .

"I have a question!"

Cayden - about 5 weeks adjusted age (April 4, 2011)



Jamison - about 7 weeks old (December 26, 2009)



Trip to the ER avoided...for now (Part two)

My intention was to split that looooong last entry up into two parts and continue the story from Tuesday morning on, but I never got around to it yesterday.

Everyone slept well Monday night.  Cayden, despite his intermittently noisy breathing, did just fine again.  He slept for two good stretches of at least four hours each time and drank plenty of milk each time he woke.  Dr. Stanford called to check on him Tuesday morning and we reported that he seemed about the same, maybe even slightly better on the intensity of his wheezing.  She was encouraged to hear that and said the likelihood of all of this being a precursor to a cold was slim to none, and the chances of the chemical pneumonia (the irritation of his throat and vocal chords) developing into much more serious bacterial pneumonia were highly unlikely, as the critical window for both of these is the first 24 hours.  If he didn't get worse in the first 24 hours, he probably wouldn't.  So that was a HUGE relief!

She also said she had been discussing things with a pediatric gastroenterologist.  When she told him the story, he replied, "Oh, yeah.  Just a bad episode of reflux.  No big deal.  Wouldn't worry too much", like he sees it every day.  Oh, wait.  He probably does see it every day!    So that was reassuring to hear from a specialist.  We will likely need to follow up with him or another GI doc in the future to monitor his reflux.  He can also guide us more precisely on how to wean Cayden off of the Simply Thick and Prevacid, so that will be helpful.  He also mentioned the possibility of him having a hiatal hernia which may be worsening his reflux and that we may want to consider doing an upper GI scope at some point, but not any time soon.

It felt like a dark cloud had been lifted and the rest of Tuesday didn't seem so worrisome.  Cayden was still coughing and wheezing, but we felt much better about his diagnosis.  He ate well all day Tuesday and slept well Tuesday night.

One thing I forgot to mention about his first doctor visit on Monday was his weight at that time: 8 lbs. 12 oz.

Wednesday afternoon, we had our first visit from the home nurse from the Tri-County Health Department's Special Infants Project.  She weighed and measured Cayden (his weight was up to 8 lbs. 14.5 oz) and assessed his developmental milestone achievements.  Overall, she said he looks amazing and is doing phenomenally well given his start in life.  I think she stopped just short of calling him a miracle baby, which in my mind, he is!  We will see her another 10 or so times over the next year so she can closely monitor his growth and development.  I am so happy to have this service!  As much as we like our pediatrician, I just don't feel she is doing enough monitoring for a preemie.  She seems to have more of the mindset to treat him like a 'normal' term baby, with visits spaced out every three months from here on out.  Combining the services of this home health nurse, the occupational therapist, and our pediatrician gives us much fuller coverage and that makes me feel like we'll have the best chance of him developing to his full potential.

Trip to the ER avoided...for now (Part one)

Something's been up with Cayden since Sunday afternoon.  He took his biggest bottle ever and then while he was supposed to be being held upright for 30 minutes, he spit up quite a bit.  Granted, he wasn't quite being held upright - he was more reclined on his back, so that may have exacerbated the problem.  Throughout the afternoon and evening, he had a bit of a wheeze/rattle, but I attributed it to reflux.  Sometimes that happens.  But later that night, he started sounding worse, and my concern was raised because . . .

Jamison is sick yet again (I know I just posted that he got sick a little over a week ago, but I swear to God, he is sick AGAIN, with ANOTHER round of sneezing, runny nose, and 102+ fever as of Saturday.) 

Cayden's wheezing got to the point where I called the doctor's office at 10:30 Sunday night to see what I should do.  He didn't have a fever or runny nose, both which would be signs of a cold rather than just a reaction to his reflux, so that was slightly reassuring.  Plus, his appetite was still normal and he was sleeping OK despite the wheezing.  The answering service paged the Children's Hospital triage nurse, and after giving her all the details of Cayden's situation, she said the case was out of her range of dealing with, and she had our pediatrician, Dr. Stanford, call me directly.

Dr. Stanford gathered the information and said I did the right thing by calling, but in the end, she didn't think he needed to be rushed to the ER.  Her gut feeling was that the wheezing was related to his reflux.  She said to keep an eye on him throughout the night and that if anything got worse - if his color changed, if he looked like he was struggling to breathe, if he wouldn't eat - I should take him to the ER.  She also said if he was the same by morning, I should bring him into her office first thing.

Keep in mind the rest of our scenario:  Jason is out of town.  My grandma is staying with us, but Jamison is moaning, running a fever, and not sleeping very well, and I didn't want to leave him with her if I had to go to the ER.  What a dilemma!

Amazingly, we made it through the night without Cayden getting worse.  He actually slept and ate on a regular schedule, but I was awake most of the time, listening, checking on him, terrified he would turn blue.

After a month of waiting, we finally had our first visit weekly home visit from an occupational therapist at 8 a.m. Monday morning.  Cayden ate around 7:15 and seemed to be breathing alright, so I didn't feel the need to cancel the therapy appointment to rush to the doctor's office first thing that morning.  But as Murphy's law would have it, as soon as the therapist showed up, his breathing started sounding worse and worse.  She was concerned that he was coming down with something and kept mentioning pneumonia, and that he didn't sound good.  She gathered her initial information and briefly discussed some exercises I should be starting with to reach our goal of getting him to breast feed more, but we didn't actually do any of the exercises for fear of exacerbating the problem.  She cut the session short and suggested I take him to the doctor right away.

So after getting Jamison (somewhat) settled with Grandma, I rushed out the door to Dr. Stanford's office.  We spent over two hours there and left without any definite answers, but the doc was leaning more toward his symptoms being related to a bad episode of reflux rather than coming down with a cold.  They monitored his oxygen saturation and heart rate the whole time we were there and it looked great.  She listened to his breathing but couldn't make a clear determination of the source (upper airway vs. lower).  Frustratingly, the wheezing and rattling noises came and went, and it seemed as soon as someone put a stethoscope on him, he would breathe normally.  There was discussion of needing a chest x-ray.  The nurses did a deep suctioning of his nasal passages to clear out any aspirate that was there.  The doc consulted with a pulmonologist from Children's Hospital to get his advice.  The pulmonologist said there is no consensus on how to treat or proceed with a case like Cayden's, but gave a couple options:  a conservative route of prophalactically treating with a short course of steroids or a more aggressive route of hospital admission, chest x-ray, and observation for 24 hours or more.  Given my situation at home, we decided to go with the less invasive choice.  He got his first dose of steroids in the office, then the doc sent us home but told us to come back at the end of the day unless he made some sort of stellar improvement by then.  She said she wanted to examine him again and then make the next decision about whether or not to send him on to the hospital. 

In the hours we were at the doctor's, I tried getting a hold of Jason to let him know what was happening, but he had limited phone signal, so we were left trying to communicate by text.  I asked if there was any way he could come home early (he wasn't scheduled to be home until Tuesday night).  He said he'd see what he could do, but in the meantime, we were both scrambling to reach out to friends we thought might be able to help Gramma take care of Jamison in case he couldn't make it back and I had to take Cayden to the hospital.  There were so many loose ends, so many unknowns, so much anxiety and worry and stress!

Around noon, we headed home.  Thankfully, Gramma had managed o.k. with Jamison, so that was a relief.  I was deliriously exhausted, but there was no time for sleep.  The few hours we were home flew by, and before I knew it, it was time to go back to the doctor.  (There was no 'stellar' improvement on Cayden's part in that short time, and I was concerned because he seemed to be coughing more.  Not just his typical 'reflux' cough, but a more drawn out, whistling/wheezing, sort of croupy sounding cough.)

So I left Jamison with Gramma again and loaded Cayden back into the car.  At the doctor's office, there was more pulse-ox monitoring, more listening with a stethoscope, but still no clear cut answer on what to do.  Dr. Stanford didn't think he was struggling as much to breathe, but was still concerned about the sound of things.  She said her gut feeling was that the wheezing, rattling, and coughing were all related to the one bad episode of reflux.  Her thinking was that he was suffering from a sort of chemical burn that had irritated his esophagus all the way up to his vocal chords.  She said I had been doing a great job of assessing his symptoms and taking care of him, and that if I was comfortable with it, she thought we could just keep him at home and observe him again overnight. 

By this time, it was looking like Jason was going to be able to come home, and I felt a little more comfortable bringing Cayden home for the night.  If I had to do it again on my own, without Jason and his pediatric/paramedic eye there to evaluate how he was doing, without his level headedness and help, I don't know if I would have been willing to do it.  I was so sleep deprived and emotionally exhausted, and I felt I couldn't objectively assess how Cayden was doing anymore.  He either seemed perfectly normal or sounded absolutely, terrifyingly sick, and I was swinging back and forth between hope and despair.  She decided to increase his oxygen a bit to give him a little extra edge and said she'd call us to check in around 9 that night.  We left the doctor's office around 5:30, ran by the drive-through pharmacy to pick up his steroid prescription, and soon after we got home, Jason had texted to say he was on the plane.  I hadn't had a chance to update him on the latest happenings at the doctor, but he'd be home soon enough and I could tell him in person.

By the time Jason walked in the door around 9 p.m., Cayden was sounding really rattley and I couldn't wait for him to don his stethoscope and tell me what to do.  I was sure a trip to the ER was in our immediate future.  He listened and calmly, without hesitation, said, "It sounds like it's in his vocal chords.  His lungs sound o.k."  I just burst into tears!  All of the anxiety, worry, fear just poured out and melted away.  Without knowing what the doctor had said, he confirmed exactly what she was thinking.  Although I thought Cayden sounded awful, Jason reassured me that he was o.k.  A few minutes later, the phone rang:  it was Dr. Stanford calling to check in.  She was pleased that he didn't seem to be any worse and said to check in again in the morning.  Jason got some dinner while I fed Cayden, then we switched and he held him upright while I got a bowl of chocolate ice cream.  We sat and watched the latest episode of the TV show Parenthood before laying Cayden down in his crib and crawling into bed ourselves.  Comforted by the presence and reassurance of my husband, I slept harder than I've slept for a long time and it felt so good!