I'm surrounded by boys at almost every turn (and thankful for each one of them and my girls too!). My sweet boys don't always appreciate or even understand "emotion". This is often pointed out by my 14yo son as something that just "isn't logical". It hasn't been a trait that I would have used to describe myself - until 6 months ago. I probably shouldn't be blogging now as I'm feeling emotional and overwhelmed right now. I honestly do pretty well a lot of the time, but there are times when I feel so discouraged.
The future used to be all hopes and dreams. I knew that there would come hard times, but I didn't know what they looked like. Now, I can see some of them - or perhaps I think I can. I see my friends struggling with their own special blessings and I long for the simplicity of my life. I wish my sweet little girl didn't have to struggle so very much to do even the most basic of things - like eating. I wonder if it's all going to be a struggle. I really shouldn't be writing now, should I? It sounds depressing even to me.
I talked with Eliana's pediatrician today about all that has been going on with her feeding. She agrees that hunger doesn't appear to be what is driving her and that there is something oral motor going on. She too is questioning if the G-tube is something to consider now. I told her that while I would do whatever I could to prevent Eliana from having to undergo another surgery, that I was feeling resigned to the fact that this was probably inevitable.
We just aren't seeing improvement at all. I've tried various bottles and nipples. I've tried sensory exercises. I've tried not tube feeding to see if it improved her ability to eat - and it doesn't! She has pulled her tube out so very many times this week that I've tried leaving it out in order for her face to heal. Yesterday she pulled her tube after her 6am feeding. I put it in about 9:30 or 9:45pm. During that time she ate less than 6 ounces and should have had 16oz. Did I say this already in another post? Sorry if I'm repeating myself.
The pediatrician is calling another feeding specialist at Duke tomorrow and asking for an emergency meeting with Eliana and I. She wants her to help assess whether we need a Gtube. She has specialty in cardiac babies. I am hoping she can help. I'm also afraid to hope - afraid that it will be more of the unknown. I feel like I'm being asked to make decisions while given conflicting information and nothing is concrete. It's so hard to know what to do. Roger isn't able to help because he knows less about all of this than I do. (He doesn't have the benefit of meeting with people/specialists or reading articles or having people talk/share their experiences.) I am so very thankful for the many people that are reaching out to share ideas, articles, stories and more with me! Truly I am thankful.
The ped hopes that the specialist will be able to offer some insight. She said that it couldn't hurt to get another opinion. I agree. It's hard for me to be the "expert" on Eliana sometimes as I feel like there is so much I don't know.
On a different subject this has been a really fun week for my children. They have been participating in a co-operative camp with a group of friends. They are learning and having a blast! They are so excited to face each day and I'm so glad that they are having these experiences. This last 5.5 months has been different and difficult for our whole family and it's nice to have a little bit of "normal" back into our lives. We are hosting the camp at home (my house and Catherine's house) which makes it easier for me to participate. It's really the only way we can participate due to the feeding issues.
Catherine and I taught today and it was so much fun. We had 12 children ages 4-9 and they are delightful! We had two sweet friends here helping with our younger children - and Eliana decided to nap through most of the morning. We learned about birds, read stories, made a bird bath, ate "nests" (rice krispy treats with goodies inside) and gathered materials and made nests. We have taught this camp before - 5 years ago to their older siblings - so planning it was a breeze. It's our 10th year of teaching camp together. It's one of those "last things" that are hard for us right now as their time here is winding down. Please pray for my sweet friend as she has much on her plate right now!
I'm going to close as I'm not sure I have much to add that would be encouraging. As I sit here and think with tears rolling down my cheeks. Please continue to pray. Thank you for being faithful.
PS I need to add something encouraging. Tonight as I was sitting and holding Eliana in my lap, she just started laughing. I wasn't paying attention to her at the time and am not sure what she found humorous, but something tickled her. She just laughed and laughed. She has the sweetest smile and laugh. I think she is just precious and despite all of the trials, I am so glad that she is part of our family!
As I was reading the Bible this morning and thinking about birds, I read Psalm 8. It's a beautiful chapter about God's power and majesty. Verse 2 mentioned something that I was surprised to see this morning - a reference to our struggles (Eliana's mouth/eating).
"From the mouth of infants and nursing babes Thou hast established strength, because of Thine adversaries, to make the enemy and the revengeful cease." Ps 8:2
I'm not sure exactly what God wanted me to get from this - but just the fact that He is aware of my/our struggles and cares. Even to the smallest detail of my life. Is God going to use this struggle to establish strength? I hope so. I know that He can. He alone can. I praise you Lord for your name is majestic in all the earth!
Flying into a storm.
2 hours ago