It's been a busy last 24 hours. Last night, Roger's sister arrived to stay for a week and help us. We are all thrilled to have Aunt Karen here!!! She had a tough time getting here with cancellations and rerouted planes and we were glad to have her finally here! She is a nurse with lots of experience. She is a delight and we are thankful she is willing to be here for us.
Eliana had a great visit with her pediatrician on Tuesday. Her weight is up again. In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week! How amazing is that?! Sweet baby girl really was using a lot of energy with her heart. We aren't going back to the ped for a month! A month! Seems like a really long time when we've been there weekly or every other week for the last 4 months. I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined! I'm so thankful for the excellent care she has received there!
Today we visited a feeding specialist. She watched Eliana and tried to give me tips. We tried changing some of the bottle pieces to help her out, but just need to keep working on it. She is doing better, but still has a ways to go before we are getting rid of that feeding tube. The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.
I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it. Oh yes, we are doing that too. When Eliana was an infant, she passed the hearing screen in her right ear but not the left. I even went back when she was a week old and had the test redone - same results. We haven't followed up again until now - well, because we were really focused on her heart.
They wanted her asleep for the test. She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her. She wasn't fussy though - very still and quiet for an awake baby. Even so, they couldn't get a reading with the first test or the second. The third test also did not give a passing mark in her left ear, but did in her right. As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!
The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication. He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up. He can't be sure that there is something wrong with the left ear, but she could have some hearing loss. I listened and remained calm even though I just wanted to cry! Rebecca was with me and I didn't want her upset. Just before we left he did one more test and told us that her left eardrum wasn't really moving. Later when I talked with Eliana's ped. she said that this most likely indicated fluid. I'm hoping and praying that is what is happening.
Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again? To hold my baby and not worry about her heart and surgery. This just surprised me today. I wasn't prepared to think my baby might have hearing problems too.
On my way home, I called and set up an ENT appt for next Wed for Eliana. Please pray that if there are problems, that the ENT will be able to detect them. Of course, I'm also praying that there are no problems! Praying that it is just fluid and that she has not suffered hearing loss. Thank you for praying once again for our baby!
Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this. I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles. (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.) I felt God comforting me by saying that her soul is what He was talking about - not her earthly body. Her soul is made in His very image! Later I was reminded of a verse in which it tells us that God does not see the same way people see. People look at the outside of a person, but the Lord looks at the heart. Thank you God for encouraging my heart once again. The heart. That has been a huge lesson for me this year.
OK, I've been promising photos and here they are in slideshow format. I've been wanting to clean them up - or post them directly to the site, but haven't been able to. I Will try to post some here if the link to the slideshow doesn't work.
***WARNING*** I don't think that these are as "bad" as the last slideshow. However, you can see her incision on some of the photos. If you have children watching, you might want to preview them.
Here's the first set. Most are the day after surgery. The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that! One with a man in blue scrubs is one of her anesthesiologists. I tried to label the pictures, but not sure how that will work. I'm not sure if the link will work or if you'll have to cut and paste. Let me know if it doesn't work.
Second set - This is two days post-op. Fewer cords, no IV, etc. The man holding her when she is fussing is Dr. Jaggers, her surgeon. Sorry for the weird effects of my striped shirt.
Final Day. The first picture is Eliana's cardiologist, Dr. Carboni. Pictures at the end are of Duke Hospital.
Tomorrow is Eliana's follow-up appointment with her surgeon. Please pray for wisdom in knowing questions that we should ask. I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.
I'm worn out and am hoping to go to sleep soon. Eliana was up late last night, most of the day and has been asleep since late afternoon. I'm hoping she'll still be able to sleep through the night.
Thank you for your prayers for us.