Isn’t he delicious? I am going to look back on this picture in years to come and think?? “oh what I wouldn’t give to hold him that size again”!

There is something so special about a baby’s first Christmas.?? The kids and I have really been looking forward to the season and celebrating it with our new addition.

Troy is 5 months actual and 3 month corrected now.?? As you can see in the pictures, he is making progress with neck strength and tummy time.?? Still a bit of a struggle for him but better than it was.???? I think he is coming along nicely in terms of development.

*?? On November 5th, he learned to blow rasberries.

*?? He has found his toes.?? (You will see him trying to get his feet to his mouth in a picture below).

*?? He learned to roll over BOTH directions on the same day (Nov 27th).?? He is not yet a pro but we have seen him go both directions several times now.?? He has also managed to turn over to his belly in his bouncer.?? I was taking a bath and had his bouncer facing the tub.?? When I got out, I was getting ready behind him.?? He didn’t like not seeing me so he turned himself over to find me.

*?? He wants everything in his mouth.?? If nothing is available, he eats both fists together.?? It’s really cute.

*?? He LOVES swaddle time and often won’t calm down for sleep until he has been swaddled.

*?? His giggle is adorable and I love his huge face splitting grin.?? Unfortunately, I haven’t been able to capture it on film yet because he wants to smile and interact with mama and not my camera so the minute my camera is in hand, all his grins fly out the window.?? Eventually I’ll get it…

*?? We gave him a bit of cereal one evening and I thought he took to it better than our other kids did by far.?? I didn’t get too far with it though because he was too hungry and was furious waiting between bites so I’ll have to try this again.?? The reason I let him try in the first place is because he is so interested in MY food.?? He tries his best to get to my drink and cup every day.

Troy is a happy baby – until he isn’t.?? LOL.???? He is, by far, my most expressive baby to date.?? You always hear people talk about the distinctive cries of babies and I have never really noticed such distinction with the other three but Troy’s are particularly distinct.?? A pain cry (even with the other 3) is always obvious but Troy has a lonely, angry, hungry, hurt, and tired cry.?? My gut tells me that this child will tell me exactly how he feels and what he thinks.?? He already does.?? 🙂

He weighed just over 14 pounds at his last appointment two weeks ago and is in the 25% for his weight (which is fantastic because preemie’s aren’t usually on the chart at all for awhile).?? That is 25% for his FIVE month age to.?? He would rate much higher for his 3 month real age.

You might remember back when I posted on Tori’s eventful Scope day, that I had been distracted that morning due to making Dr. appointments for Troy?

The first issue was the head shape and I already posted about the Torticollis and DOS Band.?? The second issue was the continued spitting up even on thickened formula and prevacid.?? I ended up taking him to a GI Specialist and we both agreed that we would do nothing more for now because ultimately this issue should solve itself and he IS gaining weight (which is the important part).

The third was that the NP was concerned that Troy’s fontanelle was closing prematurely.?? Add that to concern about headshape and she wanted to rule out a neurological reason so I have an appointment scheduled with a Neuro Developmentalist on Monday.?? The pediatrician said the fontanelle was pea sized but FINE because he sees that in babies all the time.?? (Was also worried that a closing fontanelle would narrow the window for the DOS band but the pediatrician doesn’t think that will be an issue at this point).?? The NP at the apnea clinic also wanted a developmental evaluation done due to his prematurity.?? I WAS feeling really good about that because he seems to be coming along nicely – especially for a 3 month corrected age….BUT…..

The fourth issue now enters…

Yesterday I had to take Troy to PCH for his DOS Band pictures and for his repeat Modified Barium Swallow Study.?? If you recall, when we did his study in August, they put him on nectar consistency and were concerned about his aspirating.???? Because I scheduled these two appointments back to back, I didn’t do the math very well and by the time of the MBS Troy had not eaten for five hours (he had to be NPO for 3 for the study).?? Not fun.

His swallow study was pretty much a train wreck.?? They said he was still disorganized in his swallowing and was aspirating a lot on thin liquid.?? He didn’t aspirate as much on 1/2 nectar but still needed nectar to be out of the aspirating risk.?? Further, they noted he was very disorganized in his sucking as well.?? I have noticed this myself.?? Feeding my munchkin is very frustrating.?? Sometimes he is golden.?? Sometimes he can’t get anything up (and I only use ONE nipple ALL THE TIME).?? Sometimes he won’t latch on to the nipple and I have to hold his cheeks to get him to latch.?? Sometimes he floods and I have to regulate him.

I haven’t been worried about this (only aggravated) because he has been gaining weight but at the study I realized that I should have been concerned for two reasons.?? In the first place, I have had him on 1/2 nectar for quite some time.?? Don’t ask me how the wired got crossed on that one because I still can’t figure out how I messed that equation up.?? From the study we saw that he does aspirate on 1/2 nectar.???? In the second place, during the study we noticed that he was aspirating without any visual sign (silent aspiration).?? The speech therapist commented in a bit of alarm saying that from what she just saw happen on the XRay he SHOULD have been coughing and sputtering and he wasn’t.

She was concerned about the whole thing an is questioning whether there is a neurological issue involved because she thought at this age, he should not be doing this right now and that prematurity shouldn’t be the cause of disorganization of swallow AND suck.?? Not what I wanted to hear.?? Thankfully, I already had the neuro appointment scheduled for Monday.?? Additionally, she wants him to get a feeding evaluation done and then 12 weeks of feeding therapy.?????? You can imagine how I am feeling about that prospect.

To make my day all the better (sorry – I am getting whiny again – it is the cold talking)…

The speech therapist accidentally threw my ONE AND ONLY nipple in the trash.?? She was not alarmed because she wanted to switch my nipples anyhow.?? I was terrified.?? At that point that baby had not eaten in six hours AND the formula in my bag was prepared as 1/2 nectar and the nipples she was giving me were for full nectar.?? I asked her to stay and watch me feed him and told her that the barium does NOT come through the nipple the way the formula/oatmeal combo does.?? She declined because she was too far behind.

I went down to the cafeteria to feed him before a 45 minute drive home and – just as I suspected – Troy couldn’t get even the 1/2 nectar through the nipple she insisted would work much less the full nectar.?? In tears I called Jim.?? He wanted me to march right back up there and make them help me with a solution but the speech therapist had gone on to other rounds by that time so there was nothing to be done for it.?? Had the baby been screaming, I might have further insisted but he was so worn out from the day that he fell asleep.?? Jim needed to be back at work but I had to tell him that he wasn’t going ANYWHERE until he helped me find a solution to feed our child.???? Seven hours from the last bottle, poor Troy finally was fed.?? Jim had to drill a hole in the nipple again to feed him.?? And yes, we do realize that this introduces the aspiration risk right back into the equation but hydrating Troy trumps everything else so it is what it is until we get a feeding eval done.

I talked to the Apnea Clinic nurse about all this (I have another appointment with them Monday too) and she told me that if we couldn’t find a working solution that allowed Troy to eat FULL nectar through a nipple that we may have to look at putting an NG tube down him because the risk of aspiration causing lung damage and pneumonia is just too great.?????? AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHH!?? (And by the way, did I ever mention that Troy had an apnea event at 6:30 AM on Nov 12th??? Will find out if it was “real” Monday but if it was, the monitor clock starts over as of the 12th).

Raising preemies is not for the faint hearted I tell you.

But to cheer us all back up…want to see more pictures of my beautiful boy?

It’s hard to tell in these pictures but Troy’s eyes are still grey.?? They remind me of a grey marble.