"Oh, Grandpa!!"
Check out the new jammies that Grampa Mitchell got me!! And mommy thinks I get more curls every night!
Frustration...HA
Here I go on another rambling. Today I really need this blog. I need to be able to write out my thoughts, and right now frustrations, because I can't seem to communicate them very well, even to myself. These posts probably aren't grammatically correct, but I do try...I promise.
I have a beautiful, happy, seemingly wonderful child. She is pleasant almost all of the time and can entertain herself for long periods of time and even sleeps 12-13 hours at night...and doesn't cry in the morning to be picked up. She never gets sick or requires me to entertain her. She is a perfect child in many respects.
However, she has an injury to her brain that causes so many problems in our daily lives. She can't sit up, she can't "toddle" she can't even feed herself. She laughs as if nothing every bothers her...in fact she's squealing with delight as I type. She can spit up all over herself and me...and not bat an eye...she usually laughs. My sweet child has been poked and prodded her entire 10 months of life...and has been physically forced to do things her body doesn't voluntarily do twice a week during therapy...and never gets mad at either therapist. She has had scans, probes, biopsies, tubes, and studies...and never complains. I have learned so much from her.
And yet I am so frustrated. Why does she need surgery? Why can't doctor act like every child is a critical case...because to the parents it's the ONLY case? Why can't I get more direct answers, and timely answers, on my daughters ability to swallow...without choking? Who do I need to see...and is there any way I can see them sooner rather than later? These, and many more, are the questions I face this week. Joe and I have the ability to make the decision on whether Ella has the surgery next week to "tube" her and I'm not 100% sure of anything.
On top of the feeding/swallowing issues I am faced with the future of a child with physical limitations. Ella will be a year old in less than 1.5 months and she is still at a 4 month level. I am afraid. I am praying daily for that fear, but I'm not above admitting it.
I was talking to my friend Becky yesterday and I was reminded of a feeling I have. I can't remember if I've ever expressed it before...but I feel a since of loss. I have often felt that I went into the hospital on May 9th and delivered a very healthy child...and then ended up leaving the hospital with a child who was facing death in the face. I feel like my healthy child was taken and I still struggle to understand why I was given a sick child. I know when you see Ella she looks happy. She doesn't look sick. It helps that she doesn't have any devices, but she will soon enough.
I feel alone. Not alone in life, because I have Joe (who I could write an entire entry about how WONDERFUL he is) but alone in being Ella's mother. I never realized that just because you are a mom doesn't mean that any one else will ever understand your day. There is no truth in the thought that moms sit around and watch their kids and eat all day...okay, I eat a good deal, but there is SO MUCH MORE to my day!! There are also a ton of decisions to make. Let the kid cry or make them nap? Call the doctor or don't? Go for a walk or let them play on the floor? Sounds silly, but sometimes you feel like their whole future relies on some of these choices.
Okay, that's my rant for the day.
I have a beautiful, happy, seemingly wonderful child. She is pleasant almost all of the time and can entertain herself for long periods of time and even sleeps 12-13 hours at night...and doesn't cry in the morning to be picked up. She never gets sick or requires me to entertain her. She is a perfect child in many respects.
However, she has an injury to her brain that causes so many problems in our daily lives. She can't sit up, she can't "toddle" she can't even feed herself. She laughs as if nothing every bothers her...in fact she's squealing with delight as I type. She can spit up all over herself and me...and not bat an eye...she usually laughs. My sweet child has been poked and prodded her entire 10 months of life...and has been physically forced to do things her body doesn't voluntarily do twice a week during therapy...and never gets mad at either therapist. She has had scans, probes, biopsies, tubes, and studies...and never complains. I have learned so much from her.
And yet I am so frustrated. Why does she need surgery? Why can't doctor act like every child is a critical case...because to the parents it's the ONLY case? Why can't I get more direct answers, and timely answers, on my daughters ability to swallow...without choking? Who do I need to see...and is there any way I can see them sooner rather than later? These, and many more, are the questions I face this week. Joe and I have the ability to make the decision on whether Ella has the surgery next week to "tube" her and I'm not 100% sure of anything.
On top of the feeding/swallowing issues I am faced with the future of a child with physical limitations. Ella will be a year old in less than 1.5 months and she is still at a 4 month level. I am afraid. I am praying daily for that fear, but I'm not above admitting it.
I was talking to my friend Becky yesterday and I was reminded of a feeling I have. I can't remember if I've ever expressed it before...but I feel a since of loss. I have often felt that I went into the hospital on May 9th and delivered a very healthy child...and then ended up leaving the hospital with a child who was facing death in the face. I feel like my healthy child was taken and I still struggle to understand why I was given a sick child. I know when you see Ella she looks happy. She doesn't look sick. It helps that she doesn't have any devices, but she will soon enough.
I feel alone. Not alone in life, because I have Joe (who I could write an entire entry about how WONDERFUL he is) but alone in being Ella's mother. I never realized that just because you are a mom doesn't mean that any one else will ever understand your day. There is no truth in the thought that moms sit around and watch their kids and eat all day...okay, I eat a good deal, but there is SO MUCH MORE to my day!! There are also a ton of decisions to make. Let the kid cry or make them nap? Call the doctor or don't? Go for a walk or let them play on the floor? Sounds silly, but sometimes you feel like their whole future relies on some of these choices.
Okay, that's my rant for the day.
Shameless Plug and Request
Okay, so I know that a few people check this blog daily...thanks loyal supporters!!
I have a request. I am a coordinator for the Women to Women conference our church is hosting. My committee is looking for donations to use as door prizes. If you have anyone who can help, or if you would like to help, please email me: mitchells1016@sbcglobal.net.
We are looking for freebies, gift certificates, etc. I have an official letter from our church that I can send you and the items donated are tax deductible.
Also, please look into this conference, invite your friends and attend this amazing weekend!!!
Andrea
I have a request. I am a coordinator for the Women to Women conference our church is hosting. My committee is looking for donations to use as door prizes. If you have anyone who can help, or if you would like to help, please email me: mitchells1016@sbcglobal.net.
We are looking for freebies, gift certificates, etc. I have an official letter from our church that I can send you and the items donated are tax deductible.
Also, please look into this conference, invite your friends and attend this amazing weekend!!!
Andrea
Bathtime with Grandma
Grandma Mitchell thought that a bath in the sink worked best!! Yeah, eating is NOT a problem...we have no shortness of rolls!
Night Out
Since Joe's parents were in town (bc we thought E was having surgery this last week) Joe and I decided to have a date night out. What better night to go out then to celebrate our friend Tiffany's birthday and my old roomate Allison's engagement to Ben Parkey (CONGRATS!!). 
(Andrea and Joe getting ready to go out)
(Kim, Tiffany, and Andrea after dinner)
(Engagement Picture!!...I stole it from Alli's email)
(Andrea and Joe getting ready to go out)
(Kim, Tiffany, and Andrea after dinner)
(Engagement Picture!!...I stole it from Alli's email)
Surgery Scheduled
We are scheduled for surgery on April 4th at 1pm. We are doing just the feeding tube, no nissen. I think we are feeling pretty okay about everything and we'll update with more information once we get it.
Phone Call from Dr. Brown (G.I. doc) Today
"Hi, Mrs. Mitchell. This is Dr. Brown. I was just calling with your test results. The good news is that I don't think Miss Elizabeth has a whole lot of reflux going on so that is a good thing. There is no esophagitis on her biopsy so I think she'll be able to get a simple gastrostomy tube without a nissen. I'll be calling and talking with Dr. Roden and you'll want to call him bright and early tomorrow morning to get something set up."
Dr. Roden is the pediatric surgeon. I'm pleased with this report. I'm still a little weary about doing the surgery and I'll find out a lot more from our pediatrician tomorrow. Please be in prayer that there not end up being ANY surgeries. This is already looking a lot better than where we were a week ago...God is faithful and amazing even when we have wavering faith.
Dr. Roden is the pediatric surgeon. I'm pleased with this report. I'm still a little weary about doing the surgery and I'll find out a lot more from our pediatrician tomorrow. Please be in prayer that there not end up being ANY surgeries. This is already looking a lot better than where we were a week ago...God is faithful and amazing even when we have wavering faith.
PROBE FREE
(Pictures are from last night's dinner session)Well, we went this morning (traffic on 635 at 7:30am is a WHOLE story of itself!) and had the tube taken out. You may ask what the doctor said...grrr, nothing. We are waiting for the report so we'd love for you to "wait" with us. We may not know as late as this Friday. It seems like we are getting further and further from surgery, but I think that may be my motherly-hopeful heart. As soon as we get the pH results back then our pediatrician will talk to a pulmonologist.
I just got off the phone with our GI doctor (bc Ella has been spitting up a lot this afternoon) and the nurse said we should have the report tomorrow.
I'll tell you (whomever you are...ha) that I am NOT a patient person. I'm not good being behind a slow driver and I really stink at waiting for doctors to get back to me. I know they have tons of patients, but it's hard to sit at home and hold a child knowing that they have the report sitting on their desk! I am on my knees and waiting to hear from God what our next step will be. Lucky for all of us, we aren't in control, we are just to listen and do...that kind of makes our job easy if you think about it.
I love this verse for Ella...because some day she will do all of these things, either here or in heaven: "Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
(These pictures were from Target this morning after the doctor...Grandma Mitchell and Mommy put her in this bonnet because we thought it was funny. And yes, she still had her pjs on...it was that kind of a morning.)
God is good
Well, there are a couple of things to update on. It's amazing how things can change in less than a week. Right now we are taking the slow road to surgery...and we are thankful for it now. I think if you had asked us on Friday, we would have been so freaked that we were ready right then and there to do the feeding tube. Now that we have stepped back and talked to our pediatrician in detail we are taking a more cautious approach.
We had the esophagus scope this morning that showed there were no problems with the esophagus itself. There is a problem in that the closer at the bottom of the esophagus, which leads to the stomach, does not close all the way...which makes reflux more common. They were please with the scope, but seemed a little concerned about the sphincter not closing all the way. We have the pH probe in right now and I can hear Joe from the other room gently saying "Ella, we don't play with that string" so I'm guessing it's going as well as can be expected with a curious 10 month old. She did beautifully in the procedure and every time they would say "children are usually fussy after this" or "they don't usually like it when we do this" she would start to smile and laugh...I can see the face of God in this child daily. Joe and I are convinced that she's already sat in the lap of our Lord while she was in the NICU and looked into His face...I guess that explains how she is always in a good mood.
We go in tomorrow to take out the probe and will probably get a report by the end of the week. We have also talked about seeing a pulmonologist, a lung doctor, to discuss the fluids that she does get in her lungs. We are going to exhaust every option and specialist before we decide to do the surgery. If you ask why we didn't think about this before, it's because we felt that the feeding tube was an immediate need, looking back we are thankful of the slower and more deliberate process...it's funny how I was so frustrated on Friday and now I'm glad that we didn't rush into anything.
Thank you for your continued prayers.
We had the esophagus scope this morning that showed there were no problems with the esophagus itself. There is a problem in that the closer at the bottom of the esophagus, which leads to the stomach, does not close all the way...which makes reflux more common. They were please with the scope, but seemed a little concerned about the sphincter not closing all the way. We have the pH probe in right now and I can hear Joe from the other room gently saying "Ella, we don't play with that string" so I'm guessing it's going as well as can be expected with a curious 10 month old. She did beautifully in the procedure and every time they would say "children are usually fussy after this" or "they don't usually like it when we do this" she would start to smile and laugh...I can see the face of God in this child daily. Joe and I are convinced that she's already sat in the lap of our Lord while she was in the NICU and looked into His face...I guess that explains how she is always in a good mood.
We go in tomorrow to take out the probe and will probably get a report by the end of the week. We have also talked about seeing a pulmonologist, a lung doctor, to discuss the fluids that she does get in her lungs. We are going to exhaust every option and specialist before we decide to do the surgery. If you ask why we didn't think about this before, it's because we felt that the feeding tube was an immediate need, looking back we are thankful of the slower and more deliberate process...it's funny how I was so frustrated on Friday and now I'm glad that we didn't rush into anything.
Thank you for your continued prayers.
SUSHI!!
Here are Ella and Micah at a sushi place today. If you are in Richardson (or close) I would suggest Sushi Sake...on any given day you can spot a member of my family. Oh, and check out Micah eating the steamed rice...he loves it!!
Pre-Crazy Day
This is the pre-crazy day. That being said it's been nice to just spend time with Ella today and love on her...she's so lovable.
We met with the doctor this morning. We have an appointment tomorrow morning at 6:45am to have a scope of her esophagus. They will look to make sure there aren't any ulcers or problems with her esophagus function. While she is under anesthesia for the scope they will put in the pH probe...don't know what this will look like at all. We will then be able to go home after it's in. We go back Wednesday morning to take it out. I have NO idea how we will feed her or how it works...we'll give you all the details as we get them. Oh, they will also be doing a scan of her abdomen to see if everything is growing and placed correctly.
So, that's all we know for now. Please feel free to ask me questions and I'll try to answer them. If you understand any of this and can make it more clear then PLEASE feel free to do so. We have some wonderfully medical friends!!
We met with the doctor this morning. We have an appointment tomorrow morning at 6:45am to have a scope of her esophagus. They will look to make sure there aren't any ulcers or problems with her esophagus function. While she is under anesthesia for the scope they will put in the pH probe...don't know what this will look like at all. We will then be able to go home after it's in. We go back Wednesday morning to take it out. I have NO idea how we will feed her or how it works...we'll give you all the details as we get them. Oh, they will also be doing a scan of her abdomen to see if everything is growing and placed correctly.
So, that's all we know for now. Please feel free to ask me questions and I'll try to answer them. If you understand any of this and can make it more clear then PLEASE feel free to do so. We have some wonderfully medical friends!!
Solid Food Diet
Because E is on all solids right now we spend a LOT of time in high chair...so here are some shots that daddy took this weekend.
Aunt Judy makes it all better
On Friday after all of our appointments...and in our state of waiting...Andrea's Aunt Judy came over and rocked Ella to sleep. Thank you Judy!!
Ella Last Supper
Here is Ella last Thursday night before all the swallow-craziness happened. So, this is the last time she ate and we didn't know to freak out. Funny, we had a wonderful dinner at the Brannon's...Jeff was also the last person we ate with before Ella was born...I'm seeing a trend here. Note the new big girl seat.
She's also not real interested in us so she took a nap on the floor at the Brannon's.
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