Saturday, April 18, 2009

7 months

Ella turned 7 months on March 31st so I'm a little behind on my updates but oh well. And don't look at how enormous her feet look in this picture just focus on the cute smile. Sorry about the weird angle there folks. Anyway, this month has kind of been a crazy one but now that I think about it, every month is crazy for us so really that's nothing new. I thought I would just update by answering some commonly asked questions that people ask us. It's not annoying for people to ask the same questions over and over. I actually appreciate the questions because it shows that you care and I know you are thinking about us. I just thought this might be an easy way to fill you in on what's going on.

Q: How are things going?
A: Things are okay. Everyday continues to be very hard but things are okay. I wouldn't say things are great and I wouldn't say things are bad, they're just okay. We continue to be very busy with Ella's appointments and most weeks we have appointments everyday between OT, PT, Dietician, general follow-up appts. and going to Dallas for her cranial band. Even the days we don't have appointments are still difficult just being at home and working on feedings, making sure Ella gets her medicine, etc. Because of that it is very hard to figure out how we are to live a "normal" life when our days our filled up with things for Ella. This is a marathon we are in and it is going to be several more years of challenges still to come so we are working on processing how we are going to function as a family with a child with special needs. That's right I said years. So, we are okay.

Q: How is Ella doing?
A: Ella is doing well. She is happy, smiles all the time, and loves to squeal and wiggle. She loves her sister Eva and thinks she is hilarious. Her little giggle is just the sweetest thing. She loves her Daddy to pieces and just lights up when he comes home from work. Ella is making a lot of good progress in her physical therapy. She is getting stronger overall and is using her left arm a whole lot more than she was before we started therapy. We are working a lot on tummy time and being able to push herself up. This is hard for her because of her shoulder problems and limited range of motion with her left arm and because Ella's abdominal muscles are very weak due to her omphalocele. At her omphalocele repair surgery two days after birth they were not able to pull her abdominal muscles closed because it was such a tight fit getting all the organs back in so they were only able to cover the organs with her skin and a synthetic patch (since they couldn't even get her skin over everything). She has a hernia and more than likely in the next couple of years will need surgery for this too but we're not even thinking about that right now, we have other issues to deal with ya know? So, because of this, obviously her ab muscles are weak and coupled with her shoulder problems this makes things like sitting up, pushing up, pulling up, etc. very hard for Ella. She is doing great though and we can tell she is really getting stronger so it is so encouraging to watch her progress with her physical development. She is a fighter and we are so proud of her. We have thrown milestones out the window because we know that Ella is on her own timetable and it's just going to take more time for her to accomplish what other babies her age can do and that is okay.

She is continuing to slowly gain weight so we are thankful for that. She is very small for her age (11 lbs 4.5 oz at 7 1/2 months) and is nowhere near being on the charts so obviously this is a constant concern for her doctors. We, on the other hand feel good about her weight and the fact that she IS gaining. It might be slow and a little at a time but she is gaining. We know she is small and we can't relax on our feedings yet because every drop counts but she is happy and healthy so that is good.

Q: How are feedings going?
A: Does this picture answer your question?

So this is the face she made after trying bananas...nice. Honestly I can't blame her because do pureed bananas that have been sitting in a jar really sound appealing to anyone? Doubt it. Feedings are about the same, not much better, not much worse. Her bottle feedings continue to be very inconsistent. Sometimes she will take between 2-3 ounces and the next feeding she will take 10 mls. which is next to nothing. Needless to say we are still using her feeding tube for every feeding but that is okay. I feel like I have finally reached a place of acceptance with this and have realized that I am doing all I can possibly do to make her eat and things are not any better so if she needs the feeding tube then she needs it. It has taken a lot of pressue off emotionally and I don't get as upset when we have a bad feeding because I realize that this is just how it is. I haven't given up hope, I have just come to a better place of acceptance with what Ella needs.

I know it is so hard to understand this feeding thing if you haven't had a child that struggles with it and believe me it's hard for me to understand it as well. It's just not an easy fix or a matter of finding the right bottle, the right way to hold her etc. Feeding is just a big struggle for children like Ella. I mean can we all just remember that half of her stomach and intestines weren't even in her body for 9 months in the womb and then were shoved back inside her when she was born? Yeah, if that were me I don't think I would want to eat either. Poor baby. Anyway, so feedings are a big challenge and we are anticipating that they will continue to be for several years. That doesn't necessarily mean she will have the feeding tube for several more years it just means that we have a long way to go with the whole feeding thing.

We have started trying some baby food and when I mean trying I mean like her licking the spoon a couple of times. She definitely is not opening her mouth to take bites but we'll get there. If she even sticks out her tongue to try it I am ecstatic. It's going okay, sometimes she seems to enjoy it and other times she gags and loses her whole feeding which is brutal but that's just how it goes. So we are working on trying new textures and flavors every day. During the time she is fed through her tube I give her something to chew on so she can associate that this is a time to eat even though she isn't being fed through the mouth and so she can explore new tastes.

An apple a day keeps the doctor away! Umm, not for us. Whoever came up with that saying was apparently talking out their rear.

Biter biscuit anyone? They'rrrre tasty!

These pretzels are making me thirsty! Remember that Seinfeld episode? Classic.

Carrot sticks are, in fact, this scary.
So anyway, I'll spare you more details and all the micro-managing we have to do with this feeding battle but in general feedings are a struggle but we are just plugging away and doing the best we can. It will not always be this intense and we are thankful for the baby steps Ella is making. Please keep praying for her feedings and for her to continue to gain weight.

Q: What is the timeline for her shoulder surgery?
A: We don't know yet when her surgery will be. Her MRI is scheduled for June 17 at Scottish Rite. We originally thought it would be in May but they want her to be a little bigger so it will be in June. Plans for surgery will be made once they get the results from the MRI. We are hoping that it will be sometime this summer but it depends on what they find and how Ella is doing overall and I'm sure her weight will be a factor. We will know much more after this MRI so we'll keep you posted. Until then we are just in a holding pattern and trying to get her as big and strong as possible.

Q: How much longer will she have the Cranial Band?
A: We are hoping she will only have to wear it 6-8 more weeks. There is not a definite timeline but that is the hope. Her head has really responded well and we see a huge difference in the shape already so we are really excited about that.

Q: How is Eva doing?
A: Eva is doing great. She is the best big sister to Ella and just adores her. She loves to read books to her, hold her, share her toys and just love on her. It is really sweet. Eva seems to understand (as much as a 2 1/2 yr.old can) that Ella needs special care and she is just so good with her. She loves going to her little school two days a week and she goes to Bible Study Fellowship once a week with "Grammy" (Rick's Aunt) and she loves all of those things. Sometimes I get a little sad that she is gone alot and that I can't be the one to take her to school or take her to the park but right now we are just doing what we can to survive. She feels very loved and I know she is being blessed by spending this time with others and developing new friendships and relationships that wouldn't otherwise happen. So Eva continues to be a joy for us and makes us laugh constantly. She is always up to something. :)

Don't you just love those back-packs with a leash that Eva is wearing? Yeah, that's right, she's one of those kids that needs a leash. It's great...we've got one kid with a helmet, the other with a leash. What next?

Q: How are YOU doing?
A: I am doing okay. Every day is different but for the most part I am okay. It is very hard but I feel very blessed by all the love and support we have around us. Rick is an AMAZING father and husband and I could not do any of this without him. He works so hard all day at work and then comes home and immediately is working at home to help me with the girls.

We are tired, at times overwhelmed, confused, and angry but also feel very blessed and know the Lord has not left our side. We sometimes wish we had a crystal ball to know how much longer all of this will last but I'm sure if we knew what all was to come we would not be able to handle it so the Lord has continued just to provide what we need day by day and we are trying to just take things day by day. Like I said before, we are working on coming up with a plan for how we are to live and do "normal" things since having a child like Ella is so consuming. Normal things meaning like cooking, cleaning, going to the grocery store, picking Eva up from school...none of which I am doing at this point. We have been so blessed by all the help with meals,gift cards, housecleanings, the gift of a care-giver for Ella who comes three nights a week so we can actually get some rest and so much more. Incredible! I know it seems that after 7 months things should be better but the reality is that we still need a lot of help so we are so thankful for all that everyone is doing to help us. Please be praying for us as we process how to move forward and come up with some sort of structure that will work for our family.

I know the Lord is building our character through all of this and someday we will be able to use all that we have been through and learned to help others. I can't wait for that. Until then we are relying on the Lord for wisdom and strength to help us through these hard days. He has blessed us so much and has given us loving families and friends to walk this road with us. We couldn't do it without all of you, thank you!


nancy giurlanda said...

You are so special honey, words cannot describe. I read your blog and I am just in awe of your strength to get through all of this and you still keep that wonderful sense of humor...haha I am reading this crying one minute and laughing out loud the next. You and Rick both are AMAZING and Eva and Ella are so blessed to have you. I love the pictures! The girls are absolutely beautiful and look so sweet together. I love the picture of sweet Ella and her "banana face"....precious baby, I don't blame her, I would make that face too !! I love you so, so much and I am praying very hard that things get easier for you and that our sweet Ella starts to eat more. xxoo

DCVol said...

Amazing post~ I just kept giggling and saying AMEN throughout each sentence. You all are amazing, your girls are BEAUTIUFL and Ella is such a strong and precious baby girl. We will one day vacation together and look back at these crazy days and probably laugh and cry all at once.....I continue to think about you ALL the time and pray for strength to keep pressing on in His love. Love, Kelly

Randi Freeby said...

I think about you all the time and this post was great to read. I love the honesty you always share. You are such a special friend to me. Know you are never forgotten and prayers are said for you daily.

Ashley said...

Oh Amy, thank you so much for this post. So many of us pray for your family every day, but are not sure what to pray for and really what is even going on. Your family is so precious! Your wisdom and peace on this situation speaks volumes. Thank you so much for your post

Christiana said...

You are such a great mom Amy! I am not at all surprised that my ole roomie is doing this so well but it is such a thing to see. And what a sweet Dad Rick is to his little girls.
I love you guys and wish we were closer so Neva could annoy Ella. I'm hope they will get to be playmates some day in the future if we live closer.
We continue to pray for you guys.
Love you!

Jodi said...

Can I just first say that the picture of Rick and Eva is priceless. They were all great, but that one brought TEARS to my eyes! Such a great Daddy-Daughter lovie shot! :)

Ok, Miss Amy, you rock. Your post was perfect. Your faithfulness and endurance through all of this has been such an inspiration to me, and your candid way of sharing it makes is so easy to pray specifically for your family. And it is a pleasure to do so! I just love you guys so much, and I am so thankful God used blogland :) to bring you guys back into my life at such a significant time. THe only sure thing about the near and far future is that it is uncertain, but know that I think of and pray for you four ALL the time. God is SO good. And again, you rock. Love you!

Jamie Ridgell said...

I loved reading this post Amy. Your strength just blows me away. I pray for you constantly and love you and your family so much. Hang in there friend.

Calista said...

Hang in there. Remember the Lord doesn't give us more than we can handle. He picked you and Rick to be Ella and Eva's parents because he knew you guys to do it and be the best parents those girls need. I love you and pray that things get a little easier every day. You are so strong and I'm amazed by all the things you can do.

Shanta said...

Amy, thank you for letting us catch up on your life! We love you and think of you often. You are doing a great job. I can't imagine how much you guys do in a day, but you're doing awesome. I'll have to also mention that Ella does sport that cranial band pretty well. Very fashionable. Where can I get one for me? Your girls are adorable and Rick's not so bad himself. Tell everyone hello for us!

Bogle said...

OK that picture of Rick & Eva? Uhm...can we say heartbreaker?!?! She is SO stinkin' cute. oh my goodness. What a doll!!

I am so glad you posted all of those Q&A's I have been wondering about you guys and never seem to run into you ever to ask. We think about you guys a lot and know things are so hard and not fun right now. You guys are amazing parents and I can not even begin to imagine what walking one day in your shoes is like. You are truly a blessing to me, just being able to read about your family and reflect on my own life and almost keep myself in check. So many times I think "Do I have a faith that strong?" I hope I could say those things in her situation. Thank you for being the amazing woman of God that you are. You inspire me.

Amy B. said...

What up, Amy! I have just a few thoughts after stalking your blog for a while now.
1. You are stinkin' hilarious and I'm sad that we didn't hang out in college. I don't know how that happened since we had the same friends.
2. Ella is about the cutest baby girl I've ever seen! I love looking at her chubby face and seeing her rock her pimped out band. She makes me smile!
3. Eva is beautiful! She seems very spunky and I love it.
4. You are an amazing mom. I'm so glad you have the courage to be honest about your experiences. Your journey is making an impact on so many people. You never know -- it may be preparing other parents out there for a journey of their own!

Lyn Rose said...

Thanks for your latest epistle. Indeed your family is blessed by God. I continue to pray!!

Anonymous said...

As I sit here with tears streaming down my face, I am in awe at your amazing faith, love, joy, peace, patience, thankfulness and giving God praise for everything good. I am amazed at all the good you see from this experience. I appreciate your post more than you will ever know. I am sure that this is your ministry in a way you never expected. The way you just give it all to the Lord is amazing. The song "I will praise you in the storm" comes to mind and so many others that you are living out. Your life is a true ministry to everyone who knows you and reads your blog. Thank you for your ministry to me!
I love you all!
Teressa Mick

Shelly said...

I am following your blog and story through Ann's, even as we are here in Uruguay. I am so glad I can. Thank you so much for your words!

Sweets said...

The Washburns lover the Carders! Lifting you up in prayer daily with confident in our Father to take care of you that day! He's faithful, faithful, faithful! Hold fast to Him and don't let go!
Rick, Amy, Eva and Ella are loved1

jasonandchaney said...

Let me just say, you are a MUCH better blogger than you sister. I gave her the hardest time at homecoming last year and she has still yet to blog. Your family is precious. I love the decor on the head piece. I did not know this was you until I say the picture of you and Ann together. I am so glad you and your family are doing well. Take Care!

Shelly said...

Oh Amy, I just love you. Thank you for your authenticity and vulnerability!! Thank you for telling us how you REALLY are. I have Ella's name on my fridge and pray for her and your whole family multiple times a day! I'll be praying specifically for the new "normal" to fall into place for y'all and for the Lord to continue to give you a peace and a clear vision for your sweet family over the next several years. We love y'all so much--

Summer said...

Amy, I read this post weeks ago right after you wrote it. Then I actually wrote you a card to mail. I was so touched by your honesty in sharing the reality of your new normal along with the little joys. Your faith is such an encouragement. Problem is, I am a little scattered lately and can't remember if I ever got it in the mail. So if I didn't, I wanted you to know that you and Rick and the girls are on our hearts and in our prayers daily. We love you guys more than you know.