Another hard day ...

The day is almost over - and it's been a hard one.  Why is it that things start to go wrong just after leaving the hospital and not while you are there?  Probably because we are in and out so quickly.  I'm hoping things resolve soon, but really hating to get my hopes up to be honest.  This is probably not the most encouraging post.  Sorry about that, but it is where I am at the moment.

Here's what our day has looked like.

6am - Gave Eliana a feeding in her tube as she was asleep.  During this time our two youngest boys woke up - one of them very excited about a pirate class he was going to attend today.  After getting Eliana settled, I slept again for another 1.5 hours.

9am - Eliana refused the bottle.  I tried for about 15-20 minutes to get her to take it but she pulled away and even pulled it away from her mouth with her hand.  I was feeling so dejected at this point.  I hooked her up to the machine and decided to spend the time reading my Bible and praying.  I was asking for some encouragment.  As I was reading, Eliana somehow managed to get the part that attaches to her and the feeding bag unattached so the formula was spilling all over her and the bed.  What a mess!  Wasn't exactly the encouragment I was looking for either. 

12:15pm - Eliana had been awake for most of the last 3 hours and when I gave her the bottle she took about 5cc and then fell asleep.  She woke up at the end of the feeding and shortly after it finished as I was changing her diaper, she started to gag.  I held her upright thinking she might spit up.  She seemed to settle, but as soon as I layed her back down, she threw up. 

3:15pm - She took about 7cc at this feeding.  After she got the rest in the tube I let the tubing stay in hoping to help her tummy "decompress" a little as she has been leaking fluid from her tummy.  After waiting an hour, she was still leaking a LOT from her tummy when I tried to close up the button.  It just seems like her tummy is TOO full!

6:00pm - She sat at the table with us for dinner.  Probably only the second time we've done this.  IT was so nice being all together again.  She ate some rice cereal.  I tried to give her a bottle, but she wouldn't take it.  We then went upstairs to try to eat and she took 10cc.  This has been a horrible day for oral feeds!  I think that the new amounts are just not right for her!

I thought I'd  phone the physician on call at the hospital thinking I'd get one of the residents or fellows.  I got her surgeon.  I told him we were having problems with spitting up and a lot of leakage after her feeds.  I asked how long it should take after a feed before I could close her button.  He told me 5-10 minutes.  It has been an hour or more and then I'm still having troubles!  He agreed that perhaps she was getting too much food and thought I could try to spread the feedings back out like we had them before the surgery.  He also asked who was following up with us.  I told him her ped was, but that she is out of the country.  I don't think this type of follow-up is something that he typically deals with and that is why he is wanting to make sure that we are taken care of by someone.

Later in the evening, I notice Eliana is having more leakage around the site - including some blood.  It isn't bleeding, but there is definitely some blood in the mostly clear fluids.  *sigh*  I asked Catherine to come over and look at it (Roger was out for the evening) and she thought it looked like normal leakage.

10:30pm - I decided to delay the last feeding.  She seemed hungry and eager to take the bottle.  Unfortunately, she was also tired.  She ate about 20cc and conked out!  I tried waking her to no avail so I hooked her up to the tube.  After a short time, Christopher comes by and looks at her and tells me that he doesn't think it is working correctly.  He is right.  I'm not sure if I  had the connection too loose or what, but the formula has been feeding the bed.  Only about 20cc.  If it hadn't been such a long day already, I might laugh about it.  For now, it has just made me cry.

Please pray that our little girl would learn how to eat.  This is not "urgent" like being in heart-failure or needing open-heart surgery, but it is still vital.  Eating is such a big thing.  I'm not wishing for life to be more comfortable.  Well, maybe I am.  I just want to be able to feed my baby normally - through her mouth - not a hole in her stomach!  I know that some people have to walk this path for a long, long time.  I really don't want to though.

I was expecting things to be easier with the g-tube and so far that just isn't the case!  I do LOVE having the tube off of her face.  Rebecca commented to me that she liked nuzzling noses with Eliana.  I do too!  I'm also thankful that the tape is gone and her skin is having a chance to heal.  I'm still hopeful that things will improve, though honestly I don't see that it will be much different other than not having to put the tube down her nose.  It still takes the same amount of time - longer if I can't close her button.

Prayer requests:

• Eliana would learn to eat orally.


• Wisdom in knowing how much and how to feed her.


• That she would be able to take a feed and have it digested in the amount of time that is "right".


• That Eliana wouldn't throw up any more.  That if she is being overfed, that I would know how to cut back.


• That her incision site and button would heal well.  Would love for there to be no more leakage too!


• Patience.  You would think I'd have learned that lesson by now!


• Peace.


• Sleep.  I'm trying to do a better job of napping and hopefully it's helping.

I'm tired.  This load feels heavy today.  I know that God has promised to take it - and I am ready for that.  In the midst of this current struggle, I still have much for which to be thankful.  I am thankful that Eliana is healthy.  I am thankful that Eliana does not throw up at every feeding.  I am thankful the she is happy.  I am thankful that she has started rolling over again and it doesn't cause her pain.  I am thankful for my precious family.  I'm thankful for the many people that have prayed for Eliana and our family.  I am thankful to be a Child of God.

With love,

Leslie