A Week's Worth of Ellie Updates

In reverse order of course!!!!  : )  Sorry!  JR

Friday Update-

Surgery went well today. The doctor had to redialate her nose so she should have much more room to breathe. He also found a cyst in her trachea that he popped, drained, and closed. The cyst was the size of a marble so getting that out of her throat should help tremendously. Ellie will have a MRI this weekend to make sure there are no other cysts but other than that, she is going to do lots of sleeping. They will not extabate until Monday as she is very swollen and they want to give her lots of time to rest.
Thanks for your prayers! They definitely found a couple of things that were blocking her airway. Now we just pray for a very uneventful weekend.
Love-
Matt and Abbie
Thursday Update:
ellie was pretty zonked today. not much work done by ellie today so she is up to 6lbs. 10oz. a chunk!! surgery is still on for tomorrow afternoon and though we are not anxious yet, i am sure by the time we are walking her into the surgery room we may be a little on edge. we are praying that the doctor finds a reason for her difficulty breathing and it is a quick and easy fix.
people have asked us and some of our nurses how/why we have been so calm through all this. it is as if people expect you to freak out and not handle things well. we are so thankful that we can answer that our faith in Jesus is what gives us this peace and our nurses can tell them we are christians. it is not that we don't wonder about ellie's future or what may be in store for her, or that we are oblivious to her current problems, but God has given us peace to take this day by day and to be thankful for the miracle of ellie grace. we love her and worrying about her future isn't going to change how we love her and what we are willing to do for her.
anyway, i just wanted to write about this because matt and i were talking about it on the way up to the hospital tonight. sometimes we find ourselves in tough situations and there are many ways to handle them. matt and i are trying to choose faith and peace and not borrow worries from tomorrow. thanks for your prayers for our peace and ellie's healing. we know that God hears and will heal ellie is His own way, in His own time. we just pray that it is tomorrow at 4:00. :) we will let you know how surgery goes.
love-
matt and abbie
Wednesday Update:
ellie had a nice relaxing day. she should have grown a bunch since she wasn't working as hard at breathing. :) she looked good but you can tell she doesn't like the vent and fights it much more than she used to, this is a good thing. ellie's nose surgery is scheduled for 4:00 on friday. i talked with the surgeon today and he said he doesn't know quite what he will do until he has a good look at her. he may have to put stints in her nose to keep the airway open or will use the same anti-scarring medication they have used the last two times. we just pray that this works and there isn't something else that is preventing ellie from breathing well.
we'll keep you updated.
love-
matt and abbie
Tuesday Update:
well, matt and i have been wondering when ellie's next dip would be and it came today. :( ellie had a few more seizures overnight so when matt got there this morning she was knocked out on some meds and wouldn't take a bottle. she took a little from a bottle from me at 11 but she was just acting funny. ellie was crying off and on throughout the afternoon and this is not like her. if asked to describe ellie i would say content and pretty happy, but she was neither today. ellie squirmed and squawked most of the afternoon until about 5:30. the doctor had been in to see her a couple of times and he walked in just as ellie had a big desat and was turning he blue. he said, 'that's it ellie. brooke, (the nurse) let's get her intabated." so, ellie had a breathing tube put in for the seventh time at 5:30. yuck!
ellie immediately looked better as she hadn't slept most of the day as she was working so hard at breathing. she was relaxed and resting well so we are thankful. the doctor is pretty sure that her breathing problem is all upper airway so surgery on her nose was scheduled for friday but may get moved up if they think she needs it. we hope this surgery will finally take care of her breathing issues but we will have to wait a little bit while she recovers from surgery. the bummer about the tube, of course, is that she doesn't get to bottle feed but we hope that she won't be set back by this.
these last seven weeks have definitely been a roller coaster! last friday there was a possibility she might be coming home this week and now she has had several seizures, intabation, and a surgery scheduled. amazing! matt and i continue to appreciate the prayers as we have a peace that passes all understanding. we are thankful for all the messages that say you are praying. it is quite awesome. please continue to pray for the seizures to be under control and that the surgery does what it is supposed to and help her breathing. i will keep you updated on when the surgery will be.
love-
matt and abbie

Monday update:
our ellie is still doing pretty well but she still has a ways to go before she is safe for us at home. she is eating great and growing so that is such a positive. however, she had a few seizures starting again today so that is no fun for her or us. ellie will have another eeg tomorrow sometime and her neurologist will determine what to do about the seizures. she is on just one medication now that she takes orally and we hope to be able to continue on just oral meds rather than anything IV.
she has been breathing about the same since saturday so the ear, nose, and throat (ent) doctor may take a look at her in the next couple of days to see if anything needs to be done to widen or stregthen her airway. matt and i are not big fans of surgery for her, but if that is what gets her home and keeps her safe, obviously, we are all for it. :) if the ent doctor doesn't find anything going on with her airway than they will probably just start a slow oxygen wean for her.
please join matt and i in thanking God for ellie. honestly, everything about her is just perfect for us. everything we look at her and hold her we are reminded of the incredible work that God has created in her. we also ask that you would lift her up to our heavenly father for complete healing, for ellie to be seizure free and her breathing to improve with each breath she takes. we will keep you updated on surgery so you could pray for the doctors and nurses to have wisdom in regard to surgery.
thanks friends for praying and we hope you had a good memorial day weekend with family and friends.
love-
matt and abbie