A much needed update:)

Eden is doing wonderful! Her personality continues to come out more every day. It is so sweet to see her laugh and play and giggle and EAT (and enjoy eating at that!)... It has been amazing to see how much just a little food can do for a baby! She has so much more energy and personality that ever before. She is still my sweet, laid back baby, though she has begun some attention getting techniques. She will start to cry, then when I look at her and smile, she will giggle... she thinks this is the funniest thing. She's beginning to explore peak a boo.... and making sounds are so fun too. Jodi her developmental therapist was making monkey noises this week during therapy and she thought it was the greatest thing in the world. She is also sitting a lot more - she still needs assistance, but less and less each day - I think I might cry when she sits up by herself. Praise the Lord that He continues to allow E to do things at one point we thought she might not do.

Staci (josh's sister) came to visit this week - it was so wonderful to see her. She is leaving next week to teach overseas and we are going to miss her dearly! It was great to spend some time with her before she left. My dad is coming to visit tomorrow for a few hours and I know he can't wait... and then Nana and Papa Joe are coming later in August. This makes us sound busy - but I actually think life is actually "slowing" down for the first time in a long time. I am hoping to get to work on my ETSY site some more and I have some books I want to read - but who knows - maybe Eden will be crawling soon and I'll again have no time on my hands anymore (which I wouldn't complain about at all!)



I also think Eden might be teething - though there have been many points in the past few months that I thought she might be teething. She has had little white spots on her gums since she was about 3 months old -but they have not changed one bit. The past few weeks however, she has been drooling like CRAZY - everything is wet. And everything goes straight to the mouth. Yesterday I gave her a frozen teething ring and it was quite funny to see her reaction to something frozen in her mouth - though it shocked her initially, she kept chewing away on it - I finally took it away because her hands we like ice:)




ETSY is going well... I have finally made a sell to someone I don't know!! That was pretty exciting for me... And I also had my first international customer (thanks Ursula!)... I have ordered some stamps with my logo and website on them and can't wait for them to come in the mail. I am having so much fun with this website. It has been such a great outlet for me to have something to get my mind off of things. I am having fun experimenting with different designs and textures for my cards. My new favorite is using fabrics...



These are so much fun and I think they have turned out really nice - as soon as I find some more fun fabric I'm going to make some more. I have also become addicted to browsing etsy for new ideas of things to make (but not to sell!) I have bought the supplies to make a few things for E, but have not yet jumped in to them... maybe soon. This has been such a great creative outlet for me and I'm glad I've been able to sell some of my products and share it with others. Thanks to all my etsy supporters (and a very big thank you to Mylinda!)

I am typing all this while waiting on my video to load - it is taking quite a long time, but I think I have figured it out. I'll have to do a shorter video next time - maybe that will be a little quicker. Okay - so now its done "loading" and said error - after 30 minutes - so still no video until someone helps me out and tells me what I'm doing wrong:) Any takers?

I love these smiles!:) 

Eden with her toy from the Kid's Exchange

She's getting so LONG (go figure!)

Hearing Aids

Yes - Eden finally has her hearing aids... but no, I did not get a video of it. The people at Duke would not let me video.... but I will get a video up of her soon - as soon as I figure it out. But for now, pictures will have to do.


So there they are... and notice all the drool on her dress - I think she might be teething? Isn't she a cutie... I think so. I'll try and get some more pictures tomorrow. We've had such BUSY week - I'm glad its behind us... now - lets see how long we can go without any more suprises.

Thanks to my ETSY supporters! I have posted some new cards on there - they're going fast - so check them out!

Etsy Buy Handmade ETCCards

Video

You'd think I would have realized this a long time ago - but our computer has a video camera on it so we can take videos of Eden via our computer.... Josh took one of her today while he was feeding her and while it is not that "exciting" I thought it would be fun for you all to see her in action. Since it is on our computer - it is not so portable ... so most of our videos will be of E at home - but nonetheless - you can now (soon) see video of her. I can't to catch the giggles on video to share with you... if you aren't already in love with her - you will be after you see her laughing! 

Only problem is - I can't seem to get it uploaded. Has anyone out there uploaded videos from iMovie on a Mac? 

Well - Eden is keeping me busy this week with a whopping 8 Dr's appointments. Good news is, yesterday I took her to the office to see Dr. Jeffers and we weighed her.....

12 lbs 6oz

Okay - this may now sound like a lot, but she had gained half a pound since last week. She hadn't gained any wieght in two months - then lost a bit when she was in the hospital - so she is rockin on her weight gain! I was so excited. And a funny story I shared with Dr. Herriott today at work... you all might appreciate this as much as she did... Josh called me at work (he was concerned might I add) to tell me that Eden was crying. I asked what he was doing and he said "well, she just ate 3oz in 12 minutes and every time I take the bottle out of her mouth, she cries"....I replied, "she's hungry... thats what babies are suppose to do".... Oh it made me laugh and it also made me so thankful of this new little "problem". 

Hopefully I'll get this video thing going soon.... but I'll leave this one for Josh - I'm off to work on my ETSY site (my new addiction).

Steph

Yumm... Avocados

So I did it... I started Eden on solid foods. She has had oatmeal and rice for the past few months, but I have been hesitant to start solids due to her feeding issues. Well - it is time that I start and I have much more confidence now that she has been eating much better. I few different people had recommended I start with avocados. So - guacamole it was:) Well - not really - just mushed avocados - sounds yummy huh?! Well - Eden thought so - she loved it. We'll give this a a few days and then try something else - I think maybe sweet potatoes? Don't worry - we took pictures to document the experience. Enjoy!

First Bite

Not too sure about it yet

She just held it in her mouth for a few minutes - she wasn't sure what to do with it.

And then she opened her mouth to show me she was just holding it in there!

All done and so happy:)

I think I'll take this face as confirmation that she enjoyed avocados

Spoiled....

And NO - I'm not talking about Eden:) I think I spoiled too many of you while Eden was in the hospital - you have too high expectations of me posting numerous times a day! I will TRY and post more often - but please understand that I do have a six (almost 7!!) month old at home:) 

On a medical note - Eden is still doing well.  She is still on the Augmentin to get rid of the bad infection - but she seems to be tolerating it very well... the diapers are not too bad:) And it hasn't really changed her appetite - which I was afraid of. She takes medicine like a champ. We will have a busy week next week with doctors visits - we have to go to either Duke or the pediatrician three times to have the drain pulled back (I'm really hoping that Dr. Herriott will let us come there so I can drive 5 minutes vs 45 to Duke)... Eden also has her three therapies... and the most exciting visit - HEARING AIDS! We go on the 24th to get her hearing aids. I am so excited because I think this will open a whole new world for her and I can't wait to see her reaction. I'm hoping to track down a video camera and video it for you all to see! 

Our new little apartment is beginning to feel like home... There are NO more boxes (yahh... thanks mom and dad). Ever since we moved here - I have wanted to have a place to sit outside and drink coffee in the morning while I read a little. Well - our old apartment had no balcony - so I was trilled when I found out our new little place had a patio. I searched and searched for a table and chairs for outside. This week I happened upon a DEAL at Target... I got two really nice patio chairs for $19 each!!!! I am so excited and sitting out here as we speak. The only thing is - seems our neighbors kids like it as much as we do and can't stay off our patio.... even after attempts for me, Josh, and my mom to shooo them off. This is what I found the other night:) 

This morning I came across a beautiful poem in the book, Taste and See by John Piper - it speaks volumes to my heart right now - how God uses things in our lives for His purposes. I struggle often why we have to go through all these things with Eden and why Eden has to go through all this - but it brings comfort and peace to my heart when I read Scripture and know that the Lord has purpose behind all He does and He definitely is showing us grace through it all. 

Judge not the Lord by feeble sense

But trust Him for His grace

Behind a frowning providence

He hides a smiling face.

(William Cowper, When God Moves in Mysterious Ways)

Here's a few pictures from the past few days

Mommy and Eden 

Practicing "trunk control" (aka - sitting up)

After our walk - I didn't have the heart to wake her, so I sat outside for an hour and a half while she slept (gave me time to update the blog though!)

Eden after her nap in the stroller! She gives the best smiles right after she wakes up... I LOVE IT!

This is the excited face

Gigi and Eden

The other excited face - she makes a "panting" sound when she makes this face - its very cute!

Please Continue to Pray

So today was an eventful day... eventful is not what we are going for though.  Last night Eden spiked a fever and seemed to keep it through the night - so off we went to see Dr. Herriott. Well, she did a cbc (blood count) and it her white blood cells were 35,000. This is really high and indicated that she has some infection going on somewhere. Well, since she just had surgery - that is the first thing they suspect. So she called Dr. Rice at Duke and he wanted us to come to the ED there. So - off to Duke we went. When we go there Dr. Rice took one look at her incision ( I'll spare you all the details b/c its a little much) and determined that it was abscessed (badly infected). They have started her on Augmentin (a strong antibiotic) and hopefully that will clear the infection. Dr. Rice said that Dr. Herriott should win the doctor award for the day for picking up on this... I think so too:) She was such a brave girl - all that they did to her today was the hardest thing I have ever had to watch - including all her surgeries... it was terrible... please pray that this heals and that the infection does not spread. Pray that whatever grows back on the culture - the doctors will know how to treat best. Just when I feel like she is making strides forward, something like this happens. I must cling to the promise that God knows what is going on and that all this is for a purpose. 

I was telling Josh the other that I think it is so sweet how the Lord answers our prayers. As many of you remember, when I was pregnant and since Eden has been here with us - I have continued to pray and asked you all to pray that the Lord will protect her mind from harm. Well- I hadn't thought about it in relation to food - but in the hospital everyone kept telling us that now she has had this surgery all her "parts work" but that mentally she may have issues with the bottle since she has struggled so much the past few months feeding. I had convince myself that she would b/c everyone told me so:) Well - God is faithful to answer prayers and He has protected her mind from aversions to the bottle. I feel like she has not had any issues with the bottle and is doing so much better than anyone thought. She is taking almost 20 oz and Dr. Herriott told us her goal should be 22-24oz a day. She's almost there and not fighting me one bit. Praise the LORD!

Well - I promised pictures - so here are a few from the past few days. 

Oh - and I have added some new cards to my etsy site and hope to get more up soon - please check them out and if you are in the market for some cards - please consider my shop:) 

www.etccards.etsy.com

Steph

Eden is eating!!!

I am happy to post that the past two days Eden has been eating so well. For the past two months, we have struggled to get her to eat 10-15 oz a day. Today and yesterday she has already eaten more than that. I know it will be a slow, gradual progress, but this is huge to me that she is actually showing signs that she is hungry and eating more than she was pre-surgery. I know that the Lord has heard our prayers and your prayers as well for Eden and I actually look forward to her next doctors visit when we can weigh her and watch her weight go steadily up.

I also wanted to say a HUGE thank you to everyone who has left comments on our blog and sent notes of encouragement. They have been so sweet and have really meant so much to me this past week. Just knowing that people are praying for us and for Eden has made all this a little easier. He has reminded us through many of you that He will always take care of us.

Here are a few pictures - some were taken before we were in the hospital - but I have not had a chance to take any of her now that she is home - but I will soon - I promise!

Eden on discharge day!

? Red hair ? We'll see - the nurses kept asking if she had red hair - I think it was the florescent lights

Before Eden got "the stomach bug"... aka a diaphragmatic hernia (well.. we don't actually know when she developed it, but his is before the vomiting started)

Sorry this one is fuzzy - but I had to post it because it captures her giggle so well:) Oh I can't wait for her to be feeling well enough again for her giggle.

The day we moved... Eden was out of it - she did this all day and while we moved and then we ended up the the ED that afternoon. Sad little baby:(

We're going HOME!

Dr. Rice just came by and said Eden looks great and we can go HOME! HOME never sounded so good. (now if only I was going home to a clean, organized apartment:(...) Nevertheless, its not the hospital and there will be NO ONE turning on lights at 3am and no alarms going off needlessly. Well - E is still snoozing, so I'm going to try and pack away our things. I am so proud of Eden for all her strength - which I know has come from the Lord through your prayers. 

Steph

Another update

Last night - the doctors said that Eden could finally eat - after almost 5 days with no food! Can you imagine... I think she was actually starting to get fussy from not eating:) So we started with some pedialyte and she held that down. Then they let me give her a bottle for formula last night before bed and she took 2oz pretty well. This morning she woke up fussing and as soon as I gave her a bottle, she settled down! This is definitely a new thing for her - I hope it is a sign of good things to come with her eating. She's still a little slow at it and I don't expect her to start drinking 8oz bottle tomorrow - but I think we're headed in the right direction - FINALLY! Dr. Rice said that she should probably go home this weekend as long as things continue to go well. Thanks for all your prayers - please continue to pray that her little body will handle the formula and that she will eat enough to gain weight properly!

Steph

Food... we'll see.

For 15 months now I have not had caffeine (with the exception of some sweet tea)... but let me tell you - there's nothing better than a fully caffeinated latte after a crappy night's sleep in the hospital! 

I think we are going to be able to try some pedialyte today and see how Eden does. How well she is taking food (and how well it is digesting) will determine when we get to leave this place. Please pray for her today as she attempts to eat - that she will not get sick to her stomach and that I will also be patient with her. She has not eaten since Sunday so her little tummy probably won't be able to tolerate much quite yet. She is doing so great.. I am so shocked - though she always seems to amaze us at how well she tolerates things most of us (me) would be wimps at! I have put her in a dress today since all she has now is one IV. She is acting much more like Eden and I think she is actually just getting a little bored. I need to ask her nurse today to bring her some toys - I know they've got to have some around here. 

On another note - I have a request to night shift nurses - LEARN TO WORK IN THE DARK! There's nothing like having all the lights turned on at 3am to put on a simple medication patch. Really? Its not that dark in here. Okay - I'm done... just needed to vent:) 

I'll post again a little later and let you know who feeding is going... but for now - keep up the prayers - God has hear them and will be faithful to answer. 

Steph and E

so sweet:)

Step-Down

YAHHH!!! We're finally in a room - no more ICU! We "moved in" to room 5113 and I can stay overnight with Eden now. As soon as we got over to the floor I got to hold her and she started smiling and talking to me... such good medicine for my soul! Anyway - just wanted to keep you guys updated and let you praise the Lord with us for bringing her this far. He is faithful and just and will continue His work in her.

Steph

The Latest

So, Eden is still doing well, though her hematicrit is 22 which is low so they decided it was best to give her a blood transfusion. She has been doing well off the ventilator today though she has still needed a little oxygen and they have been unable to get her off the O2. They think the blood transfusion will help with that as well. She will stay in the PICU tonight for those two reasons and the fact that they have no beds available on the pediatric units. She perked up when Josh came in to see her:) Of course... but that was good to see her open her eyes and give us (Josh) a half smile.

Well... I'm not sure I'll update again tonight - I'm exhausted and I think after we go and see her again, we are both going to head home and get some sleep. I think it will do me some good and I'll be able to function a little better tomorrow. Thanks again and please continue to pray!

Steph

Doing Well

I just got back from seeing Eden and am about to go grab some lunch (umm... hospital food). Eden is doing so well - she has been taken off the breathing machine and is breathing well on her own. She seems to be uncomfortable (who wouldn't be considering what they did to her!) and they are trying to keep her pain managed with some IV pain meds and tylenol. As she keeps doing better, they will get rid of some of the other tubes and hopefully be sent to the floor some time soon. We may be in the PICU another night because the pediatric floor is completely full and they don't have a bed for her there. Please keep praying for her - for healing, comfort and strength.

Steph

The Waiting Game

So - I'm still waiting.... I am so anxious to see Eden. I have not gotten to go back yet this morning becuase the doctors are still making rounds and the baby next to her had to have an emergancy bedside procedure so they wouldn't let any family back there. I will post again after I get to see her and know what the plan is.

Its late and I am exhausted.... I think I decided that its harder being a mom than it is being a nurse. Sitting in the hospital with Eden and watching what she has to go through is much harder than any 13 hour shift I ever endured here. She is such a brave little girl and I couldn't be more proud to be her mother. She has taught me so much and I know that the Lord is going to continue to use her in my life to teach me so many things. I have been sitting with her in the PICU for the past few hours. She has been drifting in and out of sleep, but has opened her eyes enough to look at me and Josh - such a comforting thing. While she has been sleeping, I have been trying to keep myself occupied with things other than medical information - so what better to turn to - the trusty Bible:) I love how the Lord gives me these moments to sit and meditate on His Word and pray Scriptures over Eden. I came across a few in Psalms tonight that I wanted to share. 

"I will remember the deeds of the Lord, yes, I will remember your wonders of old. I will ponder all your work and meditate on your mighty deeds. Your way, O Lord, is Holy. What god is great like our God. You are the God who works wonders, you have made known your might among the peoples." Psalm 77:11-14

"But You, O Lord, are a God merciful and gracious, slow to anger and abounding in steadfast love and faithfulness. Turn to me and be gracious to me; give Your strength to Your servant." Psalm 86:14-16

"When I thought, 'My foot slips' Your steadfast love, O Lord, held me up. When the cares of my heart were many, Your consolations cheer my soul." Psalm 94: 19

May we continue to always give thanks for Eden's life and the miracles that the Lord continues to do. Thanks again for all your prayers. More updates tomorrow - and MAYBE some pictures!:) 

Steph

Praise the Lord

Praise the Lord for His goodness. Eden is out of surgery and did great. Dr. Rice just came out and told us that things went well and Eden is going fine. He said it was probably there since birth, but they still don't know why it was not found until now. He was pretty sure that this plays a big factor in her decreased appetite and feeding issues and said that once her intestines start to wake up, we should see some improvement in her appetite. I am so thankful for the Lord's mercy on her and for answering our prayers this way. He continues to be faithful and Eden continues to be my constant reminder of the Lord's goodness. We'll still keep you guys posted. She's in the PICU and we will get to see her soon.

Stephanie

Update

They just called to let us know that they have started the surgery and Eden is doing well. Please keep her in your prayers for the next few hours. Thanks again.

Stephanie

OR

We're now in the pre-op waiting, surgery should be soon. Thanks again for praying for Eden.

Steph

Unplanned Surgery

These past few days have been absolutely crazy.... but I wanted to update all our blog family and ask you to pray for our little girl. We ended up at Duke on Friday for what we thought was a stomach bug. Eden got some IV fluids and was send home with zofran - a medicine to help settle her stomach. They told us to come back if she kept vomiting - well, vomiting she did. So we came back last night..... when we got here, her oxygen saturations were low so they did a chest x-ray. Turns out, she has a diaphragmatic hernia - she has a hole in her diaphragm and her intestines and spleen have moved up to where her lung is suppose to be - causing her not to be able to breathe as well (which explains the "grunting" that she has been doing the past week - which I thought was just discomfort of some sort). The doctors are pretty stunned as this is not something they typically see on a healthy 6 month old. From what they have told us, this is usually only found at birth (b/c the baby cannot breath) or after a major trauma (like a car accident). They went back over all her scans she has done here and it was not there on previous scans. They think she may have always had a small hole in her diaphragm and something has now caused her bowel and spleen to push up through it. This may also explain a lot of her issues feeding. So we were admitted to the pediatric unit and are scheduled for surgery this afternoon. We are unsure of the time yet, but will update as soon as we know anything else. This is pretty major surgery and it may last 3-4 hours. She will have to be in the PICU (intensive care unit) for at least one night. She will then be here at Duke for at least a week. We are pretty stunned at this point as we thought we were just bringing her in for a stomach bug and dehydration, but we are confident that the Lord is with her and will bring her through. Please pray for her little body - for strength and comfort. Please pray for the doctors (Dr. Rice) that will be performing her surgery that he will have stable hands and the knowledge to know what is going on with our precious little girl. We will update throughout the day and week, so please check back. 

Stephanie, Josh and Eden.