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! :)