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Monday, January 19, 2009

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! :)

14 comments:

shope. said...

Yeah, Amy, please do not come back here without photos. I know you're a little swamped right now, but HELLO? Shouldn't funny, photo-filled blog posts be your first priority?

Just kidding. We are praying like crazy that fixing the thrush and reflux make all the difference in the world. Who would want to eat with all that going on?

And way to go getting Eva to "go dark." I feel like in every pic I see of her, she's practicing her disguises with her sunglasses and all. Maybe your children are destined to be undercover government agents! Ella's just perfecting her sleep-deprivation torture technique ;) Love yall; and as always wish there were more we could do!

annalee said...

praying for your sweet girl and your sweet family!

Sam, Erin, Ava and Madeline said...

I wish that I lived close to you so I could give you a hug, Ella a cuddle and Eva a present (we know that is what the little ones love the best!) Just know that I am praying and thinking and thinking and praying! You bless me with your honesty and faithfulness to God. I can only imagine how proud HE is of you!

Tussany said...

Hang in there, Amy. All of our love and prayers are with you and your family.

Bpun

brianchante said...

Amy we are praying for you guys. Thank you for being honest about how you are feeling. You are and will be a great testimony for the Lord.

Bell Family said...

Amy! You are doing such a good job. I know you are in the biggest challenge of your life right now, and you are such a good mom. I will pray for you to have renewed strength each morning and for God to shower blessings down on Rick's new spreadsheet... I will ask specifically for there to be no need for more testing. You are beloved and I will call you soon. Love, kim

Jodi said...

Don't you dare apologize for that post... we WANT to know what is going on and what to pray for, and you need to get it all out, girl! I am SO sorry things have been so rough. I am praying praying praying for all 4 of you... SO wish I were closer so I could hug you and take over while you have to go dark. And maybe watch some dvr of 24 together!!! Anyways, you are loved, you are amazing, and you are the perfect Mommy for sweet Ella. And I will do better about being in touch so you can vent to me!!!! Love ya girl. Praying praying praying...

Randi Freeby said...

I love you and will run a marathon with you for however long you need. I wish we could help you all more.

mindy said...

I'm waiting for you call. I'll be so happy to come and help you or just sit and hand out life savers (I, too, have a bribery bag that has been used many times!). I love you all so much and continue to be in constant pray for you and Rick, Eva and Ella. Hugs!

Bogle said...

Uhm...funny. Adam made speadsheets just like that and Haven was all in all a normal baby. Wish I had known we could have saved Rick some time creating his spreadsheet. LOL.

Thanks for the update, we are praying. Love you guys

Leslie T

Anonymous said...

amy, rusty and i will continue to lift you up in prayer. sweet ella that she will be able to eat and thrive and eva will be a sweet 2 year old. i would be happy to arrange a play date with avery. i cannot even imagine how difficult things are for ya'll. we love you and are amazed at how God is making you stronger. love sallye

Lindsay said...

Amy~ I am so sorry to hear about this crazy time you are having. I hope your days to come are better. I would love to see the spreadsheet...I live by excell!

Summer and Jason said...

I'll give you a holla for 24!!! :-) Love that show!
Amy, you and Rick are such wonderful parents and are doing a great job managing Ella's needs. I know that the road seems very long right now. I am here and ready to help you in any way that I can, so PLEASE call if there is something I can do. Above all, we'll continue to pray.

Sweets said...

Amy,
We're praying and loving you guys and are in it for the long-haul with you!
It's always ok to be honest with God, even in the anger... He'll never stop loving you and He's big enough to take it!
-Sharon W