06
Jun
13

NICU Follow Up

In a few hours, I take Drake for his second NICU follow up clinic. There’s a chance that this time he will be discharged from it. I don’t know whether to feel happy he’s doing so much better than last November or scared that if something develops over the next year it will be that much harder to get him help. I think I just need to learn to not borrow trouble. I’m hoping since we agreed to be part of a study last visit that they’ll bring him back one more time at 2.

We’ll start with a hearing test. He wasn’t sitting up on his own yet at the last appointment, so they couldn’t do part of the test. He was 8 months actual/6 adjusted. The last visit was just 3 weeks after his hernia repair surgery, and he really took off in December developmentally.

We still struggle with weight gain. He was 17.8 lbs at his 15 month wellness a few weeks ago. My biggest fear is that he’ll get sick and lose the hard fought ounces. He has some foods he likes, and is still on 32 ounces of 26 cal/oz formula a day. At the slightest bit of discomfort from teething or any kind of overstimulation, he just stops eating altogether. Maybe I can get the clinic neonatologist and therapists to give me some advice about combating that. It doesn’t seem to concern his pediatrician.

I am very interested to see what they have to say about his hypotonia, and whether that is affecting his walking/lack of walking. He’s got several words he uses sporadically. I think he’s going to do very well on most of the gross and fine motor stuff.

I have some anxiety over this appointment, but my worry and anxiety has been a lot more manageable since RSV isolation ended. At the November appointment, I really hated both being in a hospital and the fact that he was playing with toys other kids had touched. Yuck!

I’m just really thankful I was able to get him down for an early nap. He was half asleep last time, and very angry by the end of the clinic.

6/3 was our scary anniversary. The day he stopped breathing and went blue. I went in the ambulance in a pair of jeans, a nightgown, and a pair of flip flops. I was weirdly calm. The paramedic was freaking out because he expected a 3 month old not a 7 lb newborn sized baby. None of the oxygen masks in the ambulance were small enough. The EMT and paramedic were surprised that I wasn’t freaking out on them. D was very prone to A&B’s in the NICU. I had seen that before just not without a monitor to show me his saturation level. We are so lucky that it was GERD, that he was fine, and that that was our worst day.

 

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4 Responses to “NICU Follow Up”


  1. June 7, 2013 at 2:22 am

    Really hope the appointment goes well!

    • June 7, 2013 at 6:43 am

      Thank you! He did well in some things and not so great in some unexpected things. He’s going to get some needed intervention though, so bright side. 🙂

  2. June 10, 2013 at 6:42 pm

    The ongoing trials and tribulations of having a preemie feel endless…I hope he gets the interventions he needs to help him keep growing and developing!! You’re an awesome mama!!

  3. June 12, 2013 at 5:23 pm

    Thanks so much! I love following your blog. It’s just so frustrating that my concerns never match up with what he actually gets diagnosed with at these appointments. Guess that’s why I’m mom and not doctor! 🙂


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