Thursday, April 19, 2007

New prayer request for Eliana

Midnight - Thur 4/19 

This seems small compared to the other things I've asked prayer for - but my little girl has been miserable.  She has spent much of the evening off and on fussy and gassy.  I probably should choose another word - she is crying.  I hate to see her in pain - after all that she has been through in the last several days.  And of course this would start when we are at home.  I've been holding her, rocking her and trying to comfort her (off and on) for many hours tonight.  I'm thankful I'm able to do that!

She has been unable or not interested in eating from the bottle since 6am.  :-(  For this reason I don't think it's the feeding or taking in air.  She is on the same formula as before so I don't know if this is a result of something with her surgery?  I'm planning to phone one of the doctors in the morning if things aren't better.  I hesitate to give her anything without "approval" from a doctor given her heart surgery and the fact that she is on other meds.  KWIM? 

I gave her some pain meds (prescrip from hospital) and she is currently sleeping well.  I'm praying for a good night's sleep for both of us.  We haven't gotten much this week.  Please pray that we would figure this out so she isn't hurting.  It is not like her to cry and cry and it hurts my mama's heart.

I'll update more as I can.  Feeding is going to be a big issue for us.  I'm hoping we'll get it figured out soon so that we can say good-bye to her feeding tube!

Praising God for His goodness.  We are glad to be home!

Update  10:15am Friday 4/20

She slept fine through the night.  Woke at 8am fine.  By 9am (feeding time) she began to cry and cry.  Cried hard for 30 minutes!     I gave her pain med at 9am and I'm guessing it kicked in by 9:30am. 

Called her ped and we are going in at 1pm.  Please pray for my baby.  She is not herself and having her cry like this just hurts my heart - not to mention it is a little frightening after what she has just gone through.

Thank you!

 With love,


 Update 4pm Friday

Thank you for your prayers, advice and encouragment!  I love you all!  :group:

We went to see her ped who checked her out thoroughly and feels that her crying was due to pain.  :cry:  Oh, that makes me feel so badly!  :cry:  I've heard so much about how they are trying to wean her from the strong meds and onto Tylenol only.  For now, we are going back to the strong meds and weaning a little more slowly. 

Eliana just sobbed and sobbed - both last night (and I did give her the strong med then) and this morning.  Please pray that I would have wisdom in giving her meds and in cutting back when it is appropriate.  I hate to think of her hurting. 

As an interesting note, our pediatrician called Eliana's cardiologist who told her that he was surprised that she was released so quickly.  I commented that I didn't like hearing that she shouldn't have been released.  The ped. corrected me saying he didn't say she shouldn't be released only that he was surprised that she was released so quickly.  I asked why he allowed it and was told that it wasn't his decision.   *sigh*  I really don't want my daughter in the midst of any politics and am trusting that this really was best for her.  We've had so many positive things occur this week and am believing that this was for the best too.

Our ped. did say that the upside to being home is that Eliana is not exposed to any germs/diseases/infections that she might be there at the hospital.  Believing that perhaps this is why she is home.  I'm also close enough to go in if needed.  And her care at this point is also something that I can handle.  I've learning a lot more about nursing/critical care than I ever imagined - though not so much that I don't worry and that I have all of the answers! 

Thank you for your prayers.  Please continue to pray for Eliana's recovery and that she would have no complications.

Thank you!Love,

Thur 4/19 - We are going home!!!

It's 3 days post-op and we are going home!  It's hard to believe how quickly and well she is recovering!  Truly a miracle.  I had been told 2 weeks and was really prepared for 1 week based on discussions with other people who had been through this.  Never did I expect to be home in 3 days.  Just three days ago at this time (12:30pm) I was running into the NICU to see my precious daughter for the first time after surgery.  Oh, how I had missed her during those hours of surgery.  Oh, how hard it was to let go of my little girl - to know what was happening to her and not to let me mind dwell on it too much. 

I don't remember if I shared my fears - that she wouldn't make it.  That something bad would happen to her.  That any of the time I had "wasted" would be time I would really regret if I wouldn't get time back with her.  I was prepared for the day prior to surgery - and especially the night - to be a time of pure anguish.  I was not prepared for God's peace to cover me.  I did still cry, but not the anguish and desparation that I expected.  God is good to have covered me in peace.  I am so very thankful for that.  It didn't take away the fears, but did give me a peace in the midst of the hardest thing I've ever done.

We've seen LOTS of people this morning.  Many doctors, nurses, several therapists and more.  All think Eliana is doing great.  So many comment on how cute she is - how sweet her smile is - and what a precious little baby we have.

I feel like I've been in "crisis" mode for all of the last 4 months.  It's been a hard place to live for what has seemed a very long time.  I've missed just being able to treat her like a baby.  Just to enjoy her without worrying about how or when I was doing specific things or counting hours, minutes or volumes.  I have a notebook journaling every thing that has gone into Eliana - everything!  It's been a lot to keep up with and a means of keeping me "on my toes" and not relaxed.

Yesterday I talked with my pediatrician and she mentioned that now I needed to get started on the other things - therapies and such - that have taken a back seat while we dealt with cardiac issues.  I told her that I wasn't quite ready for that.  I just want some time to have a baby.  I just want her to be a baby.  Not a baby in heart failure. 

I shared this with one of the nurse practitioner and she encouraged me to do that.  Just let her be a baby for a short time - and then to get started.  Of course, I've since seen 2 therapists who encourage much more immediate action.  I'm sure that I'd feel guilty not doing anything too.

I'm not really sure what to do now.  What is my next step?  I know that the next couple of months that I'll still have to keep a close eye on Eliana and her care.  Hopefully more and more things will normalize - or get to a normal for us.   I know that recovery will still be a challenge, but hopefully without all of the worry.  Feeding is our next big hurdle. 

I am so thankful for your prayers and encouragment.  I would ask you to continue to pray as you feel led - while Eliana is in recovery and beyond.  I'm a little nervous and feeling like I'm stepping out into the unknown.  Nobody ever said parenting was easy, but the rewards are without measure!

We do have more photos.  I'll see if some are ready to post before we leave the hospital.  Eliana is finishing up her tube feeding and then we are going home!!!  Thank you for walking this with us, for caring about us, for praying for us and for wanting to be a part of our lives. 

With love,