Update on Ella's scope

Before procedure...hasn't eaten in 6 hrs but just as happy as can be...I don't get it!

In recovery, what a sweet baby!

Thank you all for your prayers for Ella today. Her scope procedure went very well and the actual procedure itself was very quick. It was the waiting before and after that took so long so it has been a long day for us but we are just thankful to hopefully be on the right track with getting Ella some help. So far from what they could see her esophagus, small intestines and stomach look good and healthy. The doctor did say though that her esophagus looked leathery and irritated probably from all of the spitting up that she does and her stomach is quite small. She said it looked healthy but was just very small. That was pretty much all the information we got as far as visual results from the scope. They took biopsies from her stomach, esophagus and small intestines as well and I think those results will be much more informative and help identify problems as far as damage, certain allergies, etc. are concerned. We will not get those results for another week. Overall, we are very thankful that things went smoothly today and that so far there is nothing hugely significant that was wrong. However, we are hoping that the biopsies and pH probe will give us more information as to what could be causing Ella's feeding problems.

Ella came home today with the pH probe and she will have it until tomorrow morning. This test is to check and measure for acid reflux. She has a tube down her nose that goes to her stomach and we have to chart every time we feed her, what we feed her and how long, when she coughs, cries, is restless, is irritable, when she spits up, when she sleeps, how she sleeps, when she wakes up and on and on. We will do this until tomorrow morning so it will be a long night. :) We also have to alternate feeding her juice and milk every other feeding so we have to change out all of that in her feeding tube every three hours so that is kind of brutal. Okay, not kind of brutal, very brutal but hey if all of this will tell us anything about how to help her we will do it! Poor thing has to wear arm immobilizers too throughout all of this so she can't bend her arms to pull out the tube. We will pull her tube out in the morning and return all of our charting to the hospital and we will get those results in a week when we get the biopsies. Sweet Ella, she is such a trooper!

That is about all I've got so far. We will definitely update once we get more results in. Please continue to pray that we will get some clear answers from these tests. Oh, by the way, in my last post I said that this Wednesday Ella had an Upper GI prcedure scheduled and a follow up appt. on Friday but both of those have been canceled and rescheduled as of today. The Upper GI procedure cannot be done within five days of a scope so she will have that next Wednesday, Feb. 11th instead. So next week she will have several appointments so we'll update on that when we know more. Thank you for all of your prayers and support, we definitely feel it and we are so thankful for all of you. Good night, I'm off to do some charting!

Ella's scope rescheduled

Obviously from the title of this post you can probably gather that Ella was not able to have her scope and pH probe done this past Wednesday due to the crazy weather. We were very disappointed and frustrated and it has been a three-ring circus trying to get things sorted out with this and rescheduled. Sorry that I am just now updating, it has just been a crazy couple of days. I want to thank all of you for your prayers, emails, phone calls and encouragement this past Wednesday. It just felt like nothing was going the way we would have liked it to on Wednesday so we needed the encouragement even though Ella didn't have the procedure so Thank You!

The past couple of days we have been in the process of trying to reschedule the scope and pH probe. Yesterday they told us that the earliest they could get us in would be Feb. 11th! Umm, not going to work. I immediately broke into tears on the phone with poor Wendy, the scheduler and told her how I was at the end of my rope and that Ella is spitting up all the time, doesn't want to eat, is not sleeping well, etc. and that I could not wait that long. I'm sure she was thinking,"Wow, this girl is a nut job!" So she said she would put us on the cancellation list for Feb. 5th and that we just needed to pray that someone would cancel so we could get in. Again we were very disappointed but were just hoping something would happen and that they could get us in earlier. Well, today sweet Wendy calls and says she talked to the doctor and they made arrangements to work us in and do the scope this Monday, Feb. 2nd!! We are so excited and beyond thankful for this news. Wendy is about to get herself a new best friend named Amy Carder and she doesn't even know it yet. Watch out Wendy!

So, if you would, please be praying again this week for Ella and that we are able to get some answers. It will be a big week with the scope and pH probe on Monday, an Upper GI procedure on Wednesday and a follow-up appt. with the GI nurse practitioner on Friday. I know, amazing. Thank you for all the prayers and support you all have been giving us. Even though the past several days have been hard we have had some major blessings happen as well and we just continue to be amazed at how the Lord is meeting our needs through all of you, our precious friends and family.

We will update as soon as we know something on Monday. I've also got some great stories to blog about that aren't quite so Debbie Downer (Mrrr...mrrr) like my previous posts have been so check back soon. Spoiler Alert: one story involves me biting it big time on the ice outside our house, delivery man has to drag me off the icy sidewalk, felt like I was going to pass out a couple of times, x-rays done on wrist, brand new washer and dryer. More to come, stay tuned.

Update on Ella

This past week has continued to be very difficult for us and for Ella as far as feedings are concerned. Things have not significantly improved like we had hoped and the doctor agreed that after all the medications she has been taking we should have seen more of an improvement than we have. They don't feel like we should wait any longer to see if things get better and neither do we so Ella is scheduled for a scope and pH probe for this coming Wednesday, January 28th. We are really praying that we will have some answers this week about what is going on. We should get some initial results immediately after the scope and then there will be more results a week or so later after they have time to review the biopsies. Ella will also have a pH probe done, which to my understanding they will put a spaghetti size tube in her nose that goes down into her stomach to measure how much acid is being produced. She will come home with this and have to have it for 18-24 hours and then we will take it out and return it to the hospital for results. That should be loads of fun!

We would ask that you please be in prayer that we are able to get some answers as to what might be causing all of Ella's feeding problems this week. We are nervous as to what those answers might be but at the same time very hopeful that having this procedure done could open the door to positive outcomes. We know the Lord is faithful and even though lately times have seemed quite dark we know there is a light at the end. We are holding on to that hope and so thankful that we have a powerful God on our side.

So that is the new plan as of now. Even though we are doing the scope this week we are still keeping our appointment in Feb. for the Upper GI. In my last post I think I said it was on Feb. 6th but I meant Feb. 4th. Sorry, all of my days and appointments run together sometimes. We'll keep everyone posted this week as we find out more info. Thank you for loving us and praying for our family. We definitely feel it and are so blessed by all of you!

Changes

Okay, so a lot has happened since I last posted...good and bad. We'll start with the bad first. Last week was probably the hardest week we have had since Ella has been home. Her feedings went from good to bad and were getting worse by the day. I was just an emotional wreck from lack of sleep, frustration with not knowing how to help my baby and just tired of having to deal with all that comes with having a child who is not "normal." I am not complaining because I know we are amazingly blessed but I'm just being honest that this has been extremely difficult for our family. Last week more than ever we felt like there was just something wrong and we could not go on like this anymore. As I mentioned before Ella will only take a bottle if she is asleep which after describing this to our dietician with Early Childhood Intervention (ECI) she strongly felt like that was a sign of acid reflux. So she advised us to ask the doctor for a trial run of medication which he quickly prescribed so that was very helpful. As the week went on Ella just continued to have trouble eating and even if she was alseep she would hardly do anything. We were at the end of our rope and after talking with some friends we were encouraged to make an appointment with a pediatric GI doctor. We did that but the earliest appt. they had was Feb. 10 and that was just not soon enough. We called our pediatrician several times and pleaded with him to do anything he could to get us in earlier which he did and we got in this past Friday to the nurse practitioner. Huge answer to prayer!

The good news is that after listening to us describe all that Ella was doing concerning feedings she felt like the problem was a combination of several things: 1) She has reflux 2) She has thrush and 3) Her eshophagus is more than likely very inflamed from all the acid and spit ups. Up until now we were not really getting any answers as to why Ella's feedings were so inconsistent so even if this is not the whole reason at least it is a start and we feel like maybe we are on the right track. Not that it is good news that Ella has all these problems but it is good news that we may finally have a missing piece of the puzzle and be able to help her get better. This all seems to make a lot of sense as to why she does fine when you feed her through the feeding tube but she throws a fit if you try to give her a bottle. I wouldn't want to eat anything either if I had all of that going on. Poor baby! So we went into the appointment on one medication and came out with 4 new prescriptions.

We are praying that this is the answer to Ella's feeding problems and it is not something more serious. We would love for everyone to join us in prayer for this as well. If the meds work and she starts really taking a bottle well it would be life changing for our family. Even though we try not to plan our life around Ella's feedings it pretty much is and that has made the past two and half months since she has been home extremely difficult. We are already seeing God answering our prayers in small ways for this because the past three days we have seen some improvement in her feedings. She took a whole bottle today and was awake the entire time! This has not happened since she has been home. So hopefully this will continue to improve and I can feed her in other places besides her room and I can interact with the family while she is feeding. Up until now I have to close myself off in her room with no distractions every three hours while she is asleep and try to get her to take a bottle. Do you see why we cannot leave the house? So hopefully bottle feedings will continue to improve and I won't have to pull a Jack Bauer and "go dark" every three hours for thirty minutes while I try to feed her. Any 24 fans out there? Holla! By the way, I've tried to explain "going dark" to Eva and that when you go dark there is no contact made with other human life or loud noises made so this must also be the case during Ella's feedings. She does fairly well and it doesn't hurt that LifeSavers candy is involved in a successful going dark experience. Yeah, if you thought for a minute I was above bribery, think again because I'm not.

Anyway, the changes the doctor suggested made this past weekend difficult as we are trying to figure all of this out and we have had to change our schedule to include all the meds which each have to be given 4 times a day, one of which cannot be given within an hour of her reflux medication. My brain does not function in organizing things like this so Rick is the brains behind putting a schedule together for us. He got out his handy-dandy Excel spreadsheet (he loves spreadsheets...I don't get it) and has our day mapped out hour by hour so we know when to feed, how much she took, when to give what medication, and places to mark when she poops, spits up and any other pertinent info. So needless to say things are very micro-managed around here and our daily schedule is pretty rigid. We are just really praying that this is it and things will get better in the next two weeks.

So here is the game plan. In the next two weeks if things improve signicantly with her bottle feedings than we will know that the medications are working and the feeding problems are greatly in part due to the reflux, thrush, and inflammation. If they don't improve than that means there are other things wrong and they will want to do a scope to see what is going on. So again, please be in prayer that this is the answer the Lord has given and the medications will work quickly. Ella also has an Upper GI scheduled for Feb. 6th to check if there is anything we are missing so you can pray for that appointment as well. Also, the doctors are a little anxious about her weight (she is between 8 1/2-9 lbs) and that she is so small so we are working a lot with the dietician to come up with a plan that works to help bump up her weight. A dietician from ECI comes to the house twice a month to discuss feeding goals, calorie count etc. and to weigh her so that helps. We also have a developmental specialist and a nurse that come once a month to weigh her, monitor her overall development and answer any medical questions so they are keeping a close eye on everything. It is very consuming in every way so please just continue to pray for all of us as we are trying to help sweet Ella.

Thank you all for everything you do for our family. Even though this past week was extremely difficult and I for one on more than one occasion was completely broken and at times very angry with God, we have seen so many blessings. So many of you have called, emailed, sent meals, come over to laugh/cry with me, pray with us, entertain Eva and the list goes on and on. Thank you, thank you! This is not at all the way we thought things would play out so we are having to really refocus our thinking and the way we are living. After wise counsel from family, friends and elders from church we have realized we need to re-evaluate how we are going to continue to function as a family and come up with some sort of relief because the road ahead is long. We are in prayer about what that might entail, whether that means we hire help a couple of days or nights a week or what exactly that might mean. We would appreciate your prayers.

We continue to be so overwhelmed by the love and generosity from all of you, our sweet friends and family. We are so thankful for all that you are doing for us and we mean it when we say we cannot do it without you. I wish there were words to express what an impact it has made on our lives, we are forever changed. Thank you for continuing this marathon with us. I hope soon I will have more good news to report. Sorry for the long post, lack of humor and no pictures. I'll do better next time! :)

4 Months Old

We hope everyone had a wonderful Christmas with family and friends and we pray many blessings on all of you for 2009. We had a great Christmas having family at our house and especially having Ella here with us.

Opening presents with Mimi and Pawpaw


The Cousins, we love Brynn and Meg

Making Christmas cookies with Dee

Ella has been home from the hospital now for about a month and a half. It seems like it has been a lot longer than that because we have been so busy with adjusting to life with her home, going to doctor's appointments, holidays, etc. We are doing well, it is hard but things are good. We realize that we are just in a very hard time of our life right now and it won't last forever. It's still going to be a long road but we are slowly seeing good changes and improvements so we are trying to focus on the positives. We are so thankful for our friends and family who have carried us through all of this and continue to do so. You are a blessing to us! Anyway here is an update on what the Carders have been up to this month.

1. Our sweet Ella is 4 months old! Hard to believe. She is just so sweet and we are so thankful that God has given her to us. This past week Ella has been doing great with her feedings. The other day she finished a whole bottle for three feedings in a row so we didn't have to use the feeding tube those times! Holla! I know, I'm 30 and just said holla, don't worry about it. I like to throw a holla in the conversation every once and awhile but you have to have the right intonation. I have friends who also like to say it but their tone and delivery is all wrong so they have been banned from using the word holla(Ann Reese, I'm looking at you). Anywho, we were so excited because this has never happened before so this is a huge answer to prayer. Since then Ella has been taking a couple of full bottles a day AND not spitting up as much so we are very thankful for that.
Look at that big smile after finishing a whole bottle!

Even though we have seen a big improvement this week, feedings continue to be our biggest struggle so please continue to pray for good feedings. At this point conditions pretty much have to be perfect for her to eat well so it is a challenge. She has to be in this half-asleep state with no distractions to really eat well. So basically you have to go in a room by yourself for 30 minutes to feed her so there is no chattin' with the fam, talking on the phone, watching tv here. We are still putting whatever she doesn't finish from her bottle through her G-button so a lot of the time her feedings can take about an hour. Feeding time is business time so it continues to be quite time consuming and challenging especially when you've got Eva running around trying to mow the dog down with her grocery cart. So let me set this up for you in case you missed it. We've got Ella safely out of harm's way so no one gets tangled in the feeding tube...check, then there's Eva chasing the dog with her grocery cart...check, then there's the dog running around the house trying to get away from Eva...check, then there's Rick and I wanting to poke our eyes out...check. Yep, I think that pretty much covers everybody. Apparently Eva didn't get the memo about not distracting Ella while she is eating.
Move it or lose it Bruiser!

Anyway, we are so thankful for the improvements Ella has made and we will just continue to work hard at it. Thank you for your prayers for good feedings and for patience and perseverance for us, it really has been better. Next week could be a different story so keep praying!

2. We made it through all of our big follow-up appointments with doctors this month so besides seeing Ella's tummy surgeon and pediatrician we won't go back to the others for another year! WOO HOO!!

Ready to go to the doctor! Thanks for the fun boots cousin Julie and aunt Marilyn!

3. Ella has really started "talking" in the past two weeks. She just makes the sweetest noises and squeals. She is still smiling all the time and loves for anyone to give her attention. She is holding her head up really well and we are working on strengthening her tummy muscles and getting her to move that left arm more. She is doing great, we're so proud of her. And did I mention that she weighs 8 lbs. now? We're getting close to doubling her birth weight, Yea!

Just hanging out in the Bumbo seat

Just stuck in the Bumbo seat...brilliant.

4. Eva continues to be a wonderful big sister to Ella. She loves to hug and kiss her, it is precious. She also loves to help change her diapers and burp her. She thinks it's hilarious when Ella spits up, she says "Bubbles, bubbles!" Real cool, but at least it lightens the mood. She loves to share her toys and her goldfish. Yeah, I found a small piece of a chewed up goldfish in Ella's mouth today...amazing.

Ella! Are you in there?

Eva entertaining herself

Eva entertaining Ella

5. I love this 2 year old age. Eva keeps us laughing all the time. She's got some great dance moves these days. My favorite is that she is trying to do the Thriller dance thanks to our Jonah VBS dvd from church. Honestly, I could not be more proud. I was the biggest Michael Jackson fan growing up and still kind of am. Whoa, now simmer down before you rag on me. Let me clarify that I am a fan of old-school MJ, not so much present day MJ. I mean can we all agree that Smooth Criminal is just about one of the coolest songs ever? Who's with me on this? Stand proud MJ fans, stand proud.

One of her many dance moves...The Power Stance

6. Eva has been interested in the potty for awhile now even though we are not actively potty training. Lately she wants to sit on the potty all the time and it seems like everytime we turn around she has taken her diaper off and is ready to go even though she never does anything in it. Well, so we got her a little potty and she loves to sit on it and look through our church pictoral directory to find all the people who took pictures with their dogs. Yes, that's right, with their dogs. It's great. She also got Elmo's Potty Time dvd for christmas which helps. By the way, have you seen this video? Hysterical. I think I'm enjoying it just about as much as Eva. If you enjoy some good bathroom humor(which who doesn't right?) and you need a good laugh then this dvd is for you. The other day it was on and after about 10 minutes I realized Eva wasn't even in the room. It was just Rick and I on the couch going, "Ha! Did you hear that? They just called the poop duty!" Does this give you any indication of our maturity level here? Wow.

7. Our moms are gone now. :( We are surviving, sometimes barely but we are surviving. We have been so blessed by our families and all the help and sacrifices they have made over the past 4 months for us. It is overwhelming what all they have done and continue to do for us. Thank you, Thank you!! Eva and Ella have also developed a very special bond with their Mimi and Dee which is priceless and it has been so fun to watch it develop. We are so blessed to have such amazing families!

8. So because moms are gone, last week I did my own grocery shopping for the first time in 4 months! Have I cooked anything yet? Negative. One step at a time people.

9. We are starting to get out a little more. We went to church as a family for the first time ever the past two weekends. It was wonderful! Other than that, we don't really go anywhere. It is still very difficult with feedings and all so we pretty much just stay at home unless we have to go somewhere or are feeling brave and want to attempt it.


10. This has nothing to do with anything besides the fact that I think it is so weird and funny and I wonder about this place over by our mall every time I pass it. There's a restaurant called CoCo's that advertises that it serves chicken, seafood and donuts. Really? Chicken.Seafood.Donuts. Are there that many people out there who are thinking, "Man, what should I eat for lunch today? What sounds really good is some popcorn shrimp and a bear claw. I wonder if there is a place I can get both?" Seriously? Grrross. Kudos though to Coco's for their stunning combination of menu choices and for staying in business serving chicken, seafood and donuts. Who knew? I guess there really are enough people out there who like that combo. Again, gross.

If you made it through this whole post I am impressed. Can you tell that I have little contact with the outside world? :) Thank you for continuing to pray for us and for everything you all do for us. We continue to be overwhelmed by all the love and support during this trying time for us. Thank you, Thank you!! Happy New Year!

Update on Scottish Rite

This past Tuesday we had our appointment with Scottish Rite to evaluate Ella's shoulder and it went very well. We were a little stressed about how everything would go and what the day would be like but it was great. Ella did so good and almost finished a whole bottle without a fight while we were there so we didn't even have to mess with the feeding tube! Thank you Lord! She was just flashing her sweet smile at the room full of doctors while they poked around on her as if it was no big deal. She loves being the center of attention. :)

We were very impressed with the team of doctors. They were prepared for us and we could tell they had done their research and knew all about Ella's history. This was an initial visit mainly for them to look at Ella's shoulder and decide if they would even be able to do the surgery there or if we needed to look at other options. They all agreed that they are confident in being able to do the surgery and their goal is to hopefully do the repair in one surgery. No promises were made on that but that is the goal. They do not want to do surgery until she is at least 8-9 months old so that time frame would be May or June. They want her to be bigger and to have had more time to really heal from her other surgeries before we do anything else. So between now and May sometime they want to do another MRI of her shoulder so they can really see what is going on and start putting together a surgery plan. She had an MRI done last month before she left the hospital which provided some good initial info but she was so small that it was hard to really see everything clearly. Once she is bigger and has had more time to develop they will be able to get better pictures and know more about the bone structure, blood flow etc.

They were impressed by the function she has in her left arm even though her range of motion is limited. However, they feel that even with surgery she will never have full range of motion with the left arm and felt like our hopes of her arm having completely normal range is shooting for the moon. While I respect their opinion and know that realisticly she may not have full movement I am still shooting for the moon. I mean we serve a God who created the universe, parted the seas and raised the dead and is still performing miracles today so I have full faith that Ella's arm can be healed completely. That's what He tells us to do in Hebrews 11:1 is to put our faith into action and "be sure of what we hope for and certain of what we do not see." So that is our hope, that her arm be completely healed and have full range of motion. I am reminded of His healing power everyday when I look at both my girls and especially Eva. I just think back to the day when we were handed a box of tissues, given a pat on the knee and told I'm sorry but there is a 5 percent chance at most that your baby is going to live. And look at Eva now, she is perfect! God is amazing so again I say shoot for the moon!

So what happens now? We just continue getting Ella to heal, eat better and gain weight. She will have some developmental delays physically like head control, possibly crawling, etc. because of her arm so we are working with Early Childhood Intervention which is a program that helps families with children with physical and mental developmental delays. They will come to our house periodically to help us and Ella work on these things as well as feeding concerns. Down the road she will more than likely need much more therapy than they can offer but right now this will at least help us know what to do to keep her arm and muscles strong and moving until surgery.

Other than that, Ella is doing well. She is getting close to 8 pounds! Yeah, I know she is 3 months old and barely weighs 8 lbs. but it's cool. Feedings are still hit or miss but getting better. Please continue praying for that. Thank you all for your prayers for us and for Ella. We'll keep you updated as we know more.

3 Months Old

First of all, I'm a little embarrassed that the first family picture I have to post is of us in our pajamas and I'm pretty sure I haven't brushed my hair in a day or two. Yikes! But I figure this is a much more accurate picture of how things really are around here so throw us a bone okay? We'll try to get some good Christmas pictures...not in our pj's and I promise to brush my hair!

In more important news, Ella is three months old this week! She is so sweet and just smiles all the time. She is a happy baby which we are so thankful for considering all that she has been through. She is such a little trooper! She is sleeping well and working hard at eating better with the bottle. We are loving having her home with us and we're slowly adjusting to everything. The past two weeks since she's been home have been rough and good at the same time. This week has started out much better so we are hoping that things continue to get a little less crazy around here. We've decided that both our moms can never leave us because we can't survive without their help! :) Our sweet moms have been trading off coming a week at a time to stay with us and help ever since Ella was born in August...yeah,it's December...unbelievable! We have the most amazing and loving parents, they are such a blessing to us.


As for Miss Ella, she is pretty much on house arrest due to it being winter (we're a little germophobic!) and because her feedings are such an ordeal that it is too hard to go anywhere with her at this point. And really our main focus is for her to continue to heal and to eat well so we are just trying to focus on the task at hand. Also, if I can avoid looking like a three-ring circus when in public I will. I mean the other day we went to the doctor and it took all of us, me, Rick and his mom to keep things under control. Eva didn't help matters either by deciding it was a great time to take her shoes off, open and close doors and run down the hall at the office. Really Eva? Not the time for that sister! So, basically we only leave the house to go to Ella's doctor's appointments (without Eva) which we have at least once or twice a week. We have a lot of follow up appointments with different doctors and weigh-ins with her pediatrician that keep us busy. Other than that we are at home working on feedings. Pretty exciting right? :) So even though Ella is home it's not like we really have a normal life with a new baby. It is hard but it is okay, we are very blessed with an amazing little girl who is such a joy. We are so thankful for how far she has come and that she is home and things are headed in the right direction.

There's nothing like Ms. Potato Head earrings to really pull an outfit together!

This week she is doing better with her bottle. Praise God! It is still kind of a battle most times at the beginning of the feeding but then she settles down and does well with it. She is taking more on average which is great but she still is not taking a full bottle so there continues to be inconsistency. We are so thankful for these small steps and it just gives us hope that if we keep trying things will get better. It is still taking an hour or more once she takes the bottle and finishes the rest through her G-button so it is quite the ordeal. I feel like all we do all day is work on feedings so it is very draining emotionally and physically but I know the hard work will pay off. Thank you for your continued prayers for Ella and her feedings, we really are seeing some improvements this week. Keep praying!

We have our appointment next week with Scottish Rite on the 9th so please continue to keep that in your prayers as well. We are so humbled by all the love and support from everyone, we could not do this without it. Please continue to keep our family in your prayers.

Ella finally got to meet her cousins Caden and Emery, we love our cousins!