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!