April 2, 2013:

Wow... it's already a new month. We are actually in RJ's birth month now. He will be 37 weeks tomorrow!! We are making progress. He's still doing great with his oxygen requirement and keeping his Fio2 in the low 20's. Yesterday and today it was at 23%. Monday he had a new chest x-ray and labs. They weaned some more pressure on his NIPPV. Today they adjusted his sodium med since his level was high. He's doing great with is feeds. They've had to give him a few glycerine chips (rectal suppositories) to help him poop lately. Daddy got to change a nice juicy one last night at cares time. :) Thursday he will have another chest x-ray and labs to see if they can wean anything else on the NIPPV. We've had some good snuggle sessions lately. On Sunday my dad got to hold him for the first time and get to see him get a bath later in the evening. RJ had the best bath ever with keeping his sats up. I think it was the magic of extra warm water. :)

On the baby room front, Sunday was a super busy day. We hung shelves on the decal tree we put up. We got baskets for the changing table to help me keep things organized. We hung the curtain rod and curtain. One of the most important things was securing the changing table pad to the table. I know we already have a wiggle bug, so I want to try and prevent any wiggling accidents off the changing table if possible. :)

Like I mentioned in the last blog, my health is still an issue. I really wish we could just close the chapter on my health problems and be able to move on. I was able to get a last minute appointment with my Internal Med group. My doc wasn't available, but one of her partners saw me. I'm supposed to have them manage my blood pressure. I was told from this point on it must be in the 120/70 range or less. They increased my Nifedipine to 60mg daily and come back in 3-4 wks for f/u. I asked about getting a copy of all my images and getting a second opinion. He's going to refer me to a top notch vascular surgeon here at UK. I have not received that appt yet, nor have I received the 2 month repeat CTA appointment. I feel like I'm spending my time in the NICU and doctors offices. The thought of the pseudoaneurysm being there in 2 months and having to have an operation scares me. We are hoping RJ is home end of April or first of May. I don't want to have to deal with being hospitalized right after my baby has come home... I also want to be safe and alive for many more years... This is truly a tough situation to be in and I wish it upon no person. I've come up with a new phrase for this whole situation with my health and RJ's. It is all a TRAUMATIC BLESSING.

This afternoon I was able to spend an hour talking to the NICU manager. She'd passed by our nursery the other day and I was super emotional. She asked how I was doing and I broke down crying. She came back and gave me her business card with her personal cell phone written on it. Today she wanted to hear from my perspective how the pregnancy, hospitalization, NICU experience has been. Through our discussion we've begun formulating a plan to better suite Roberts and my needs. She wants us to have a positive experience and take away as much frustration and stress as possible while we are in the NICU with RJ. She's going to talk with our primary PA and RN. She's going to look into helping our daily nurses be more consistent versus having multiple nurses throughout the week. She's going to look into us being able to hold RJ multiple times per shift now that he's getting older. She's been a NICU mom herself with twins, so she totally understands all the feelings and emotions I'm experiencing. She said today that this is the worst thing I'll ever experience. I sure pray it is. This truly has been a traumatic event in our lives. She told me to text her cell phone day or night in the event that I needed someone to talk w/ or cry w/. She has a very tender spirit and was very nurturing. It was a therapeutic meeting and I look forward to some positive changes for our NICU experience.

Thank you again for all the prayers and support you all have been providing.