Wednesday, May 16, 2012

Taking the NG (Nasogastric) tube home with us

Well, I'm actually feeling like a burden is lifted.  With her feeding up in the air, I felt a lot of confusion as to what I want to do and what I should do.  The occupational therapist and the speech therapist came this morning at 10am to work with Cayla on bottle feeding.  It was pretty much the same results we're getting from nursing.  She latches on and sucks and can swallow for the most part, but after 5-10 minutes she's done.  She pushes away and fusses and doesn't want more.  It's a slow process, but the verdict is that she is only able to exert so much energy to do such an aerobic exercise like eating, that if we tried to make that the only way for her to get food in her belly, she will wear her heart out trying right now.  They want her heart to rest and get strong for her next surgery in September.  She can't do that without the NG or feeding tube that's in her nose.  So, she can bottle feed for 5-10 minutes to build that skill, but the rest of her milk will be fed through the tube.  I am still able to nurse maybe twice a day or so just for her comfort sake and well-being and was told if I keep pumping I'll most likely be able to nurse her after her heart surgery more regularly.  We'll see.  So, I started some training for the tube tonight and will continue to learn all I need to before being discharged.  So... it could be this weekend that we get to go home!  If not, it's still not too far off which is a wonderful thought!

Now that it's pretty much decided, I do feel a lot better.  Cayla and I were able to sleep a great sleep for 2 and 1/2 hours this afternoon!  I felt so refreshed.  I am back at RMH for the night now that the nurse can do the bottle feeding and NG tube for me.  I've been told to skip everything tonight and try to get a full 6-8 hours of uninterrupted sleep.  Thank you Lowell for pushing me to focus on taking care of myself.  :o)  I really am trying.  I have to say though, that I cried all the way to the shuttle after leaving her tonight even though she's doing really well and will be taken care of by the nurses.   I just feel awful leaving her all night... hormones and tiredness are on my list of excuses right now.

Well, it's off to bed!  Thanks for the prayers.  There are two little things I'll ask prayer for while I'm thinking about it.  Her little behind is still so sore and red and raw that it's just turning into a crying fest for her and me everytime we change her diaper.  It's ever so slowly getting a little better, but it's taking it's time healing.  The second is that her cast has got to be so uncomfortable.  We've put gauze under it on the back of her thigh where it's starting to dig into her leg.  Earlier she was so inconsolable when she'd been fed and changed.  We had to give her some Tylenol to settle her down, but the only thing I can think of that might be bothering her like that is her cast on the back of her leg there. 

God is faithful and has given me many opportunities to talk to people and tell them what He's done already in Cayla's life.  I've actually had the 2 moms in the beds on either side of me, come many times in the last 3 days to our room just to sit and talk.  God has given me opportunities to share about Him with others, but so far that's all I've been able to do.  They both think it's great that I have such an amazing faith, but I've tried to tell them that it's not my faith that's getting me through, but the Lord Jesus Christ who my faith is in, that's getting us through this.  I have become good friends with Roseanna, an Amish mother that my dad and Pat started talking to when they were here.  She has had many struggles and we've been able to read the Bible together and talk about it.  She was amazed to see colored underlined verses in my Bible.  She'd never seen anyone write in their Bible.  She wrote a bunch of verses down to look them up on her own.  We keep saying we're going to exchange addresses, but haven't yet and I do believe time is running out.  She is staying here at RMH too, so I run into her alot.  Nurses and doctors have heard how God has spared Cayla in such a miraculous way to not have to have the Norwood surgery and Dr. Lorber said he really is amazed at how this all turned out for Cayla.  :o)  Dr. Lorber... God does work miracles!  :o) 

Ok, once again, I will say, off to bed for me... but alas, I must pump once more before my sleep!  :o)  Sorry for talking about all the nursing and pumping stuff on here, but it's like Dr. Stewart told me today when he passed me carrying my "stuff", "You really don't get a break from that do you?"  He said he's stopped by many a time and kept walking since he heard the pump going... Oh well, it's for a season and am glad I get to do it!  :o)  Good night!