Tuesday, May 15, 2007

Cardiology Update

Well, I meant to update earlier, but my 2yo decided that taking the keys off of the laptop seemed like a fun thing to do.    Not sure why he did it, but it made it hard to use and I don't get to the downstairs computer too often these days.  (Kind of reminded me of the day of Eliana's surgery when the G and H keys weren't working.  A challenge then - and many more keys are not working now.)

Eliana had an appointment with her cardiologist yesterday.  It's our first time seeing him since she left the hospital.  Thankfully there were no additional tests or bloodwork yesterday!  She weighed in at 13 pounds and 3 ounces.  That's up a pound in the last 2.5 weeks. 

Dr. Carboni checked her heart and thought she was doing well.  His concern was her feeding too.  The number of calories she is consuming per day is not high enough to continue to gain weight.  I shared with him the proposed idea from the feeding therapist of going "cold turkey" with Eliana's feedings during the day using a bottle to feed.  This would lead her feeding to be hunger driven.  He said "No".  He didn't think that this was a good plan for Eliana.  I have to concur.  I thought I'd do it if it really was best - but it didn't seem like a good plan.  It really is hard to know what is best as I've already had to do many things for Eliana that were/are outside of my comfort zone.  Isn't that what Moms do though?  Whatever is necessary for their child! 

He said that even though I've seen changes in Eliana that it will typically take at least a month to get over the effects of heart failure in terms of her endurance.  Makes sense doesn't it?!   We are almost at that marker, though I'm not expecting any sudden changes now.  It helps explain why things have been hard - and slow.  I guess I did expect drastic changes with feeding - especially when she ate 3 ounces just a day after her surgery.  He told me that he wasn't surprised with the struggle and had expected it.  He obviously hadn't shared that before which is fine too.  I think with the heart surgery looming I probably didn't need to know.

Dr Carboni also told me that the feeding tube may have "doomed her" in the eating area.  I can see that, but we also agreed that we really had no other choice.  When she went into heart failure she just wasn't able to eat.  She needed the weight and additional time for a successful heart surgery.  I don't have any guilt about the choice of the feeding tube.  I truly felt it was the only - and best - option at that time.

So, we are to increase her formula to 27 cal/oz (adding more powdered formula to the ready to feed) and increase her feedings to 120cc (4 ounces).  Adding other things weren't an option due to the small size of her feeding tube.  We may skip 2 feedings back to back either in the morning or afternoon and allow her to feed from the bottle as much as she wants.  She is not to go more than 6 hours without eating.  (I got all of this in writing which was really nice.  It's added to my notebook which is almost FULL!  My notebook has written records of all that she has eaten for the last 4 months, all meds taken, procedures performed,  meetings with doctors, amts of pumped milk and more.)

I tried the new routine this morning.  She was tube fed at 6am while she slept.  She was awake around 8am and I fed her a bottle about 9am.  She took 2 ounces (half of the recommending feeding).  She fell asleep about 11:30.  She woke up and ate about 12:30 and took in 40cc (less than 1.5 ounces).  Next feeding was at 3pm when she took 17cc (just over .5 ounce) and then I gave her a full feeding with the tube.  We'll keep trying this, but it looks like it will be a long road!

Dr Carboni talked with me about the possibility of a G-tube if feedings continue to be a struggle.  She needs to be at least 6 weeks out from heart surgery before that would even be a possibility.  The NG-tube (what we have now) is not a good long-term option.  The G-tube would be a surgical procedure to put a tube in directly to her stomach.  This would allow continuous feedings at night.  (Can't do that with this tube as it's placement can slip.)  It would also get the tube out of her nose/esophagus.  I can't imagine that it feels good and sometimes wonder if it's irritating to her.  Especially when she takes her tube out often. 

Did I mention that last night I was carrying Eliana and walked into the kitchen.  I saw one of her feeding tubes - with tape attached - on the floor.  I wondered which little boy had taken one from the trashcan - and why.  Silly me - Eliana had taken it completely out with none of us noticing!  How does she do that?  It's 16 inches long!  We were all there in the same area too!  She is good at that removal.  Placement again was hard like the other night.  Not sure what is going on and wish I had thought to ask her cardiologist.  I can always phone him - he did make sure to tell me that at the appointment.  He has been a wonderful doctor!

Oh, we are officially medicine free now too!  I'm to watch for signs that she may still need it -  rapid breathing would be one like when she was in heart failure. 

Our next appt with Dr Carboni is in 4 weeks.  That's a long time for us.  He has said that we will begin moving away from heart being the focus and into pediatrics.  Though clearly Eliana will be seeing a cardiologist for the rest of her life - just not as often.

I think that's all for now.  Here are some specifics we would love prayer for:

1.  Feeding - That's really the big focus now.  She has a loooooong way to go before she is eating enough on her own.  A really long way to go.  Pray that she would learn to eat more at a feeding.  Pray for wisdom for us and her care providers as to the best methods to use in getting her to eat.

2.  Health - That Eliana would continue to stay in good health.  Dr Carboni said that it would be fine for us to start getting out.  It's been 5 months and Eliana and I really haven't been anywhere - except lots and lots of doctor appointments.  Pray that we would make wise choices as to where we go with her.

3.  Family - Pray that we would begin working on some good routines and uses of our time.  Our last 5 months - and even a lot of the last year - has been not the norm for us.  We need to find a new normal.  I need to work on more consistency in chores, school work, play time and individual time with the children.  We also need to make choices about commitments we make and want to be wise about how much outside of the home we can commit to doing.  I'm still not really ready to do much of anything yet.  I'm just emotionally not ready to do much of anything at all right now. 

4.  Time with God - Pray for our spiritual time to always be a priority.  Pray that God would continue to teach us, shape us and make us more like Him. 

5.  Feeding Tube - This is a small thing.  Could you pray that Eliana's feeding tube would stay in until we get a shipment of new tubes?  We are out of the type that she uses.  I ordered more a week ago, but they sent the wrong size.  (Even after a long conversation about the right size, style and type that we need.)  The ones that they sent are too big for her.  It just isn't an option in my mind to use them.  The ones we need are on back-order.  Hopefully they will be here by the end of the week.  (Wish I had known this yesterday so we could have tried getting one while at Duke.  Oh well.) 

It's still hard to figure things out some days.  I can't really explain it - though perhaps if you have been through some sort of trial you may understand that moving on and finding a new normal is a challenge.  I know God will lead us to it - and that it can and will be a good place with Him.  This journey is not a place I've chosen to go, but know that much good has come and will continue to come from having been there.

I remain abundantly thankful for so many, many things - my precious daughter who is fighting so hard, my wonderful family and friends, my sweet Saviour.  I do have much to be thankful for each and every day.

With much love,

Leslie

4 comments:

  1. Dear Leslie,

    Eliana is 13 lb. 3 oz.!! Wow!! Do you realize how very good she is doing with her weight?! She has gained an average of a pound a month, and that is the rate at which some of my healthy babies gained! Justin, 8 lb. 4 oz. at birth, had only reached 13 lb. 2 oz. at 9 mos.! Then, he nearly stopped gaining (had bronchiolitis twice in the next 3 months) and was only 13 lb. 12 oz. at one year of age! If Eliana keeps this up, she just might catch up with Justin! He is doing better now that he is on pureed foods, and I am adding those supplements in with his food.


    I'm glad you got counsel that you feel comfortable with from the cardiologist. What he advised sounds like a good place to start.


    Justin only had an NG tube for 2 1/2 mos. And I sometimes gave him a break of 24 hrs., or a little longer, after he would pull it out. I'd just try and see how much I could get in him by nursing, bottle, and even using a medicine dropper to feed him. He would do pretty well for about 12-18 hrs., but then he would just be all tuckered out and not able to suck long, so I'd end up putting another tube in. But once they figured out that he was not able to metabolize digoxin very well and that it was accumulating in his blood stream and messing him up... once he was off it, he wanted to eat every 2 hrs.!! I was the one who decided then that he could do without the tube. But I probably should have continued to pump and add those extra calories. Perhaps I was thinking more of my own wishes than I was what would be best for Justin. I wanted to totally breastfeed him. To have that one area that was "normal" and to prove that my body really could give Justin the nourishment that he needed without extra "help".


    Have you and Eliana been missing church for these five months? That would be the first place I'd take her. Only I wouldn't put her in the church nursery, where she might be exposed to things other young children might be coming down with. Does your church do anything like baby dedication? Hers should be extra special, because she is a little miracle!!


    Abba Father! Eliana needs another miracle! She needs a feeding miracle! From human observation, it looks like the odds are not in her favor right now that she will be able to successfully transistion to 100% oral feeding. But since when was anything too hard for YOU?! YOU delight in doing things that to us seem impossible! YOU delight in surprising us and encouraging us and building our faith! YOU have told us to just ask, so we are asking and we are agreeing in our request that YOU enable Eliana to transistion to 100 % oral feeding and to be off the NG tube completely by the time she is 6 mos. old (or sooner)! Give Leslie wisdom in what type bottle nipple to use and any techinque that will help Eliana's progress. Give Eliana a strong appetite for the bottle, a strong suck, and stick-to-it-iveness to work at it for increasingly longer time periods. Thank YOU, LORD, for Your grace, Your mercy, and Your love!! Amen!!


    GOD's BEST!

    Love, Anna

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  2. We're committed to praying for you and your loved ones, friend. So thankful for the progress that's been made, and praying for the needs that remain. Praying that our Father God continues to meet each need and longing of your heart with Himself.


    Oh, Leslie...I thank Him for your beautiful life and testimony.


    Give that baby girl a kiss from me, okay?

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  3. It seems like all I do is post "I am still praying Leslie", so here goes again.


    I am still praying Leslie!

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  4. I thought I'd try this and see how it works. I


    Anna - Yes, I do think she has great weight gain. It's totally due to the feeding tube though! She's been on it for over 3 months now and I don't see it ending any time soon. I do understand about wanting to nurse instead of bottle feeding. I could see myself making the same choice.


    We haven't been to church since Eliana was born. It was too risky for her during the sick season. She was in heart failure by 1 month and it didn't seem wise to expose her then either. We do have a baby dedication at church and it was last Sunday. We considered it, but just weren't sure so didn't risk it.


    Nikki - Thank you for your faithful prayers and encouragment. I gave Eliana a bunch of kisses from you!


    Sheri - I love hearing that you are praying for us. It's sweet to know that and I'm glad you posted!


    Love to all of you whether you've posted or not.

    Leslie

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