Wednesday, August 5, 2009

Health Updates & First Sunday

I'll be honest. I wish this post was all about how wonderful Ellie's doing. I wish I could tell you she's as healthy as can be. But that's just not the case. She could definitely be worse, and we are praising the Lord that she's not. But her little body is still struggling to overcome a few things.

Blood Pressure
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.

Yes, she's really working on her pout.

The only other shot I got of her looking at me (aka the camera).

Looking at her daddy in a very determined manner. She has him wrapped around her little fingers and isn't letting go!


The Splan Clan said...

I have been keeping up on little Ellies condition since I found out about your blog when she was first born. My heart hurts for you when I read about all of her feeding issues. My son was two weeks early and had horrible reflux. Not like Ellie's but horrible. I understand the throwing up the whole bottle thing...and the lack of any bibs without puke stains on them:) I just wanted to give a little bit of encouragement....just remember that not matter how bad Ellie feels after eating...she is with her momma which is exaclty what she needs. She will eventually grow out of this. Her little body will get stronger eventually. She has been through alot and God will continue to carry her along. Don't forget that momma:) And....dont forget that this wont last for long!

kirstenpetree said...

I'm sorry to hear little Elise isn't doing as well as you had hoped. It doesn't always go like we had planned does it? I too have learned that the hard way. My son was born at 30 weeks, he was never good at eating and always threw up and still does at almost 2. But he has a feeding tube now. He only weighs 17lbs, but that's all because he has Cerebral Palsy, he is "legally blind" and has many other problems, including high blood pressure. So I some what know what your going through and give you hugs through the computer. I have learned that like you said our children's lives are in God's hands even though sometimes we dont understand why he lets the little ones suffer so much, it is for his glory!

Our growing family said...

SO sorry to hear that she is still having a hard time! =( She still looks adorable in that dress though!
That heat wave was awful. We spent nearly a week living at my in-laws sleeping in their living room because they had one of those $400 machines.
I was praising GOD! And VERY thankful that I wasn't in my 9th month like last summer!

Heather and Travis said...

Love, love the pictures of Ellie. Adorable!

I know what a bear the reflux can be. MK still takes Prevacid, but the reflux is so much better. I pumped for the first 13 weeks and then we switched formulas four different times. It was difficult finding something that her body could easily digest. But we found it and she is doing well now. I pray that things get better!

Anonymous said...

I have followed your blog for quite some time now but have never posted!! She is a darling little girl a wonderful mommy and daddy. I can relate to little Elise's tummy issues and my heart is still heavy when I think back to those days. My son is now 7 (only 34 lbs) yet the reflux seems like yesterday!!! We did end up seeing a GI doc and he was changed to a prescription formulas called "Neocate" it is very expensive, often not covered by insurance, can only be ordered by a pharmacy, had to be made 30 minutes prior to consumption and tastes awful BUT......... it was well worth all of it!!!!!! It is a corn based formula and it changed our lives. You have probably already heard of it and have maybe even tried it but I thought I would throw it out there just incase you hadn't. Good luck and give Elise lots of hugs and kisses because they do grow up tooooooo fast!!!!!!