Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, May 25, 2011

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!

Saturday, May 21, 2011

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!

Monday, May 16, 2011

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!

Wednesday, May 11, 2011

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.

Monday, May 9, 2011

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!

Saturday, May 7, 2011

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 25th percentile, quite an increase from the 10th 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 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.