Eliana had a visit with her cardiologist yesterday. I had a list of questions. Seems as surgery gets closer that there is more and more to wonder about. A couple of my questions involved her feeds. Her rate of feed is 75ml per hour. She started at 75ml feeds which meant that each feed took an hour. (No, the whole post won't be a math lesson.) When her feeds increased to 85ml and then to 90 with the same rate it obviously took longer to get a feed in. I asked about changing the rate and he said it was fine to increase it to see how she tolerates it. We can try to keep the feeds to an hour.
He looked at his notes and commented on her surgery being scheduled for April 16. Then said I think she'll be alright until then. That caught me off guard - he is my more laid back doctor. I said we could move it up if it needed to happen sooner. He said, no that he thought she would be alright. It's just a juggle now with her weight gain and her meds. Trying to find and keep a balance. *sigh* Now I'm wondering if we should have pushed to have it sooner. Not going to second guess it though. If she needs it sooner, we'll just deal with it then.
Eliana has continued to gain weight. She is up to 10 pounds and 11 ounces now. She is even started to have some rolls. I love seeing that on my tiny little girl! Dr C mentioned that her weight will probably taper off and that things might get a little hard over the next week or so for her. Now this will probably have me questioning every little thing. Like tonight when she was more sweaty than usual ... is this something different or just a result of a warmer than usual day around here. I need to be at peace with all of this!
The next question ... "Is there any way we can eliminate the 3am feeding?" Said with much hope in my voice. He replied "Oh you are still doing feeds every 3 hours?". YES! We've been doing round the clock feeds for 3.5 months now. Many, many sleepless nights for Roger and I! He said he would try to work it out for me and let me know.
At the end of the appt, he left and had someone join me to help reinsert Eliana's feeding tube. (I've done it 11 times now!) She had pulled it out during her 9am feeding. I could see that it was going to happen and had gone to get the tape to reapply it. She was quicker than I was though.
She then had to have blood drawn for some lab work. Poor little one cried and cried. Today she has a bruised heel from it being squeezed so much to get the blood out.
I fed Eliana a bottle and then as I was leaving, I hadn't yet heard from the cardiologist so I tracked him down. I really wanted an answer to the question about the feeding - especially if it might mean a little more sleep!!!
He agreed that we could eliminate that feeding!!! Where is the happy dance icon?! Wow! We can both sleep from 1am until almost 6am. That's 5 uninterupted hours! She will be taking larger feeds at each of the other 7 feeds to make up for missing this one.
We didn't skip last night as I didn't want to increase her fluids during the night as I wanted to be able to see how she tolerated it. She has done fine with it today so I'm looking forward to actually being asleep at 3am. I've been awake until 3am almost every night since Eliana has been born. I'm looking forward to this.
It will be especially nice since I'm doing the feeding schedule alone while my family is on a field trip/vaction. Please keep praying for all of us. Pray for safety, patience, peace and lots of sweet memories for all of us while we are separated. I'm sad to be missing this trip and my family, but know that it is the best for Eliana right now.
Hmmm ... just a couple of hours until bed time. :-) Guess I should go get ready. I'll try to post again tomorrow and share some pictures.
It is why I never want to go inside
1 day ago