Weekly Update (August 24-30)

As you know, Addison was admitted to Akron Children’s on Wednesday, August 26. Her GI doctor admitted her so that she could have an NG tube placed (a tube that goes into her nose and down to her stomach), we could get the education we needed to take care of the tube at home, and get set up with all the supplies we will need. The plan is for her to have the NG for a couple of months, and if all goes well, she will then have surgery to get a G-tube placed. She will likely have the NG until November. She also got her upper GI series x-rays done, so that we didn’t have to do them as an outpatient. They were normal (yay!). The poor girl got her 12 month shots on Tuesday and then got admitted on Wednesday. She was understandably exhausted and irritable. I think I held her for a good 9-10 hours on Wednesday; we got lots of cuddle time in. Addison did well in the hospital. At first, her tube feeds were done by gravity, but she threw up Wednesday night and Thursday morning, so the doctor decided to do her feeds on a pump, so that we could better control how long it takes them to infuse. Addison is supposed to eat 100 mL of formula 5 times a day (about 17 ounces). She also gets 100 mL of water each day through her tube. We give her about 20 minutes to eat whatever she can or will from a bottle, then whatever is left of the 100 mL goes into her NG tube. She has tolerated everything very well since we switched to the pump. We follow up with the GI doctor at the beginning of November and in the meantime, we will continue to see a dietician to make sure her calorie and fluid needs are being met. We were discharged on Friday afternoon. I had not seen Violet or Oriana since Wednesday morning and Ryan had not seen them since Tuesday night. We missed those goofy little girls. I am just so thankful that we have gotten this whole process started, after fighting for something to be done for so long.

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Addison sleeping in my pull-out bed. Apparently it was better than her crib.

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We did lots of cuddling.

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Seriously, how cute is this kid?!?

This week was another tiring one for me. I spent Wednesday night and all day Thursday at the hospital. I came home Thursday night to shower and sleep and was back at the hospital by 7:30 Friday morning. I had some very serious struggles with overwhelming anxiety for a few days. Apparently, having one of the girls back in the hospital bothered me more than I thought it would. I especially feel like the NG tube and tube feedings gave me flashbacks to when the girls were in the NICU. I spent a lot of time holding Addison while she was getting her tube feeds this week, and I always held the girls while they were being fed in the NICU. It was completely overpowering anxiety. I had no idea it would affect me so much. There has been research done that shows that parents with babies who spent time in the NICU are at risk for PTSD. I can definitely say I have a personal understanding of how that is entirely possible. Because I like to provide education links, here are some on PTSD in parents whose children spent time in the NICU:

http://nyti.ms/1hqCitA

http://handtohold.org/resources/helpful-articles/understanding-ptsd-when-the-stress-of-the-nicu-persists/

As I mentioned, the girls had their 12 month checkups with the pediatrician. They are all doing well. She feels that Addison is functioning at a 3-4 month developmental level, and Violet and Oriana are right around 9 months (which is their corrected age, so that’s awesome). Heights and weights were:

Addison: 27 inches and 15 pounds 5 ounces

Violet: 28 inches and 18 pounds 13 ounces

Oriana: 27.5 inches and 18 pounds 7 ounces

We are looking forward to getting back into a routine and figuring out what the heck we are doing! All this medical equipment makes me feel like I am at work! However, I am thankful that my nursing experience has given me the knowledge and experience to deal with Addison’s NG tube and tube feeding. It is stressing me out and I have done these things many times before, so I can only imagine how a parent with no medical background would feel. As usual, this next week looks like it is going to be a bit hectic too. I have myself scheduled for 20 hours at work (hopefully I’ll get to work most of them), Violet and Oriana have an appointment at the NICU follow-up clinic, and Addison has PT and her OT evaluation. Welcome, September. Let’s see what craziness you have in store for us!

P.S. – Here’s a couple of videos for you!

Violet giggling because Oriana is touching her and Oriana just being a general ham. (Addison let’s out a good coo in the middle too):

Oriana waving things around and making noise. She does this all the time:

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About cmathes10

Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.
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