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.