Thursday, November 6, 2008

Two steps forward one step back

Two steps forward one step back. I heard this term more times than I care to remember in the NICU. I hate it. I hate the sound of it and I hate what it stands for. Today was kinda a two steps forward and one step back kinda day.
I wasn't feeling well this morning. I have been feeling really crappy lately in general. Usually I feel ok at the start of the day but at the end I feel completely exhausted. I think this week has been worse because it has been one of those weeks where we have had appointments every day and I just can't get a minute to slow down and take time for myself. Today I felt exceptionally bad. So bad that I woke Shawn up and asked if he could call in because I didn't think I could drive down the hill and back by myself and we had an appointment that Kennedy had to go to. It was a High Risk Clinic appointment. We meet with a whole team of people for Kennedy. I was really hoping the Nutritionist would reduce the calorie mix on Kennedy's formula but she said she still wants to keep it at 30 calories for now even though she is doing really well. I took in the results of some blood work that was done on the 30th and they decided to stop Kennedy's Diriul and Mag Chloride. That was a huge victory for us- consider it the two steps forward. Not only does Kennedy have way less meds to take, but now none of them need to be refrigerated which makes traveling with her soooo much easier AND we don't have to refill the Mag again which is great because its not covered by insurance and costs around $50.
So whats the step back you ask? Kennedy is back on oxygen. When they did her pulse-ox read she was only satting 92 (out of 100). 92 is not horrible, but its not great either and they are concerned that she is satting even lower in the higher elevation where we live and even lower while she is sleeping. As a precaution they are having us keep her on 1/16 lpm and they will recheck her in a month when we go back. I'm not gonna lie. It upset me. No being on oxygen is not the worst thing in the world, especially compared to what we have been through. Even though it is a really low flow rate I still cried a little and felt upset. I was so proud that she didn't have to be on oxygen when she came home. Its just a little disappointing to me. Oh well. I know it could be A LOT worse so I guess I will declare this the official end to my pity party about oxygen.

4 comments:

Kristen @ Change of Pace said...

I think every preemie blog has an entry titled "Two steps forward one step back". I hate that phrase too. You and Miss Kennedy are in my prayers.

JennB said...

You need a hug. I'm just really happy she made the two steps forward. As for you being run down, I have a proposition for you...when you're feeling like it, call me. LOVE YOU GUYS!

Jo said...

I'm back from dial-up land and checking up on blogs...I saw the scale post and am so glad we could inspire! It is comforting to be able to check their weights.

I'm so impressed with how much Kennedy is eating. Way to go!

I'm sorry she is back on O2. I know it is disappointing. Hopefully she will be tube free again next month!

Jacquelyn said...

I haven't been keeping up with your baby lately so I am pleased to see how beautiful she is and that she is doing as well as she is..your doing amazing, keep up the hard work, your reward is in your arms...