The happy note I have for you is related to her blood pressure. Yesterday we went to see the pediatric nephrologist (kidney doctor), and her blood pressure was 76/50. That's still high. But she used to camp out with the 76 number at around 100. So she's doing better, and he decreased her medication dose. He's also going to see her again in three weeks rather than four in hopes that we can decrease her medication fairly quickly.
I don't actually know anything certain regarding how her PDA is doing with the coil that was supposed to close it. We follow up with the pediatric cardiologist next week. But today the pediatrician said Ellie still has quite a distinct murmur, and that she'll be interested to hear what the cardiologist finds when he evaluates her. It's possible the coil didn't take. We'll know next week.
I'm pretty sure I mentioned previously on the blog that Ellie's vocal cords appear to have been damaged by the intubation she had when her coil was placed. Two days after the coil procedure, I took her into the pediatrician to have her checked out since she sounded like she had laryngitis, and the cardiologist on call said it was probably vocal cord damage but to take her to the pediatrician just to make sure. At that time, the pediatrician expected her voice to fully return in 7-10 days but said to watch for her ceasing to make noise entirely or ceasing to eat - both of which are signs of vocal cord paralysis. Although Ellie can still eat and her voice has gotten better and sounds more scratchy than laryngitisy, she still can't fully cry. Her cries are either extremely soft and scratchy or completely silent. So today the pediatrician put in a referral to an ENT (ear, nose and throat) doctor. I haven't called yet to set up the appointment but hope to see this new doctor soon.
Ellie has been gaining weight steadily for most of her life. But lately her reflux has been getting worse (see below), and she is no longer gaining weight at the goal pace. They'd like her to gain about 1 pound every 2 weeks. She's 10 pounds, 4 ounces today, which means that in the past three weeks she's only gained 8 ounces (and she was wearing a larger diaper today). That leads me to her reflux...
I believe I've mentioned that the initial medication we tried for Ellie's reflux (Axid) was no longer helping. Two weeks ago the pediatrician put her on the next level of medication (Prevacid). Although Ellie hasn't been spitting up quite as frequently lately, she's clearly in a lot of pain. We feed her lying on her side on one of our thighs with her legs in a sitting sitting position against our stomach. Lately whenever we try to put her into that position, she writhes in pain, arches her back and cries unconsolably. Other positions don't work either. I normally have to reposition her 2-5 times before I can get her to latch onto the bottle to begin eating. Although she usually does decently well once the bottle is actually in, she also frequently pushes the bottle out and begins arching, writing and crying. And when I put her up to my should to burp her, she cries and writhes until she gets comfortable, which can often take a few minutes.
When she spits up, it almost always the full feeding, which is part of her lack of weight gain because she just can't keep enough down and/or just doesn't want to eat enough. Last night I started what should have been her final feeding before falling asleep (or at least had been for a couple of nights and was again tonight) at 7:00pm. Between feeding her, holding her upright so she wouldn't spit up, her spitting up, cleaning her up, letting her rest in my arms for a bit, starting again with the next bottle, etc., she didn't get to bed until 12:30pm (after 4 bottles and two very large spit ups involving three of those bottles).
It's often hard to tell whether she's still hungry or in pain and just wanting more milk to try to keep the refluxing milk from coming back up. And it's so very frustrating and painful to watch. Someone asked whether the doctors think she has any milk allergy or intolerance. And the answer to that is no. She doesn't actually have any of the symptoms of such an allergy or intolerance; any that kind of match don't match as to the time at which they occur (i.e. during a feeding, right after or in between feedings).
Today the pediatrician upped her dose on the Prevacid to the highest she can have. If she's still having these problems in two weeks, the pediatrician is having me call a gastroenterologist since the pediatrician will have done all she can at that point.
Although my prayer is always that the Lord would heal her little body, I know that may not happen. Especially not in my timing. I struggle every day, wanting my baby girl to be healthy. Wishing she wouldn't throw up or writhe in pain when I try to feed her, wishing she could cry a real cry and wishing her little heart and kidneys were fully functioning. But I must remind myself that I am not in control and that I don't want to be. The Lord has my little girl's life in His hands. He will hold her when she suffers and heal her if that's what He wants for her. So I try each day to hold her in my heart with open arms allowing the Lord to use her in my life and the lives of others to bring glory to Himself. That's what it's all about.
On another note, I'm overdue to posting photos from Ellie's first Sunday at church a week and a half ago. These photos are actually from after church because I forgot to take any at church. But you can see that she got all dressed up. She doesn't have any tights, and this was before the heatwave so she's wearing a little pair of cotton pants under her dress to keep warm.