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,
Outdoor Mom – February 2020
2 hours ago