Emma had her Auditory Brainstem Response test done today. (hearing test) The results to most would be a disappointment... To us it's a blessing!
Emma is not completely deaf!! She has a severe hearing loss in her left ear and a moderate hearing loss in her right ear. At this time she cannot hear a human voice. She can hear things like a vacuum running, a high pitched dog bark, etc. This we already expected because she doesn't startle.
We are excited that with the appropriate hearing aids Emma should be able to hear to a certain extent! God is blessing this little miracle baby in so many ways !!
In the next few months she should be able to hear as well as see! Which are things she hasn't experienced in the 5 months of her life thus far! I couldn't imagine not being able to hear or see.
Once again, we need to praise God for the miracles he is performing through Emma and our family as well. If it weren't for our prayer warriors constantly overflowing God with Emma prayers, we know we would not have this sweet baby if it weren't for all the prayers. Thank you all for all you have done.
This news alone is proof (if you so need it) that prayers do work. God is listening to our prayers and fulfilling our requests, its just taking time.
Monday, July 30, 2012
On the road again.....and we wait
After an extremely loooonnnnggg day.. we are settled into the Holiday Inn in St Louis, MO.
Emma is swinging in her swing. She cant have any formula after 1:30 a.m. and cant have any water after 5:30 a.m. So we are probably in for a long night.
The ABR (Auditory Brainstem Response) went as good as can be expected.
*SEE "Can you hear me now?!" on Blog Posts
The trip down went well. She had to stay awake so she would sleep during her ABR. Boy! That was a treat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! NOT! ...... Who makes these rules?! Seriously! Well, any who.. it worked.. She went in for ABR we snuggled up in their so called "comfortable recliner" ... o_o Not so much "comfort" there.
The test was scheduled for 2:45pm and we left Children's at exactly 6pm. Kory was starting to think we left him.
We are all extremely exhausted but I wanted to let you all know things are going smoothly.. we are just tired. (This will probably last for a few weeks.)
Kory was extremely thrilled with the reading material in the waiting room... Ha ha Not so much .. He said he was afraid to leave the waiting room because he thought he would get lost.
We are all very anxious for tomorrow to be here and our prayers to be answered and Miss Emma will come out of surgery and have a speedy recovery. (Can you tell I'm a little nervous.. AND..AND...AND..)
As you lay your head down tonight I ask that you say a prayer for our entire family. Those that cant be here, PaPa Billy who is left at home to fend for himself because we stole Gramma Jan away, Kory & myself, Maddie who is on her first trip with Emma (call it "our first family vacation" if you will..by no means is it a vacation for us but it is a blessing to have Maddie here with us this time.) Pray for Gramma Jan since she has to be strong for all four of us. Most of all pray for Emma and her medical team this week. Remember God is good! Praise him for his work through our family!
Emma is swinging in her swing. She cant have any formula after 1:30 a.m. and cant have any water after 5:30 a.m. So we are probably in for a long night.
The ABR (Auditory Brainstem Response) went as good as can be expected.
*SEE "Can you hear me now?!" on Blog Posts
The trip down went well. She had to stay awake so she would sleep during her ABR. Boy! That was a treat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! NOT! ...... Who makes these rules?! Seriously! Well, any who.. it worked.. She went in for ABR we snuggled up in their so called "comfortable recliner" ... o_o Not so much "comfort" there.
The test was scheduled for 2:45pm and we left Children's at exactly 6pm. Kory was starting to think we left him.
We are all extremely exhausted but I wanted to let you all know things are going smoothly.. we are just tired. (This will probably last for a few weeks.)
Kory was extremely thrilled with the reading material in the waiting room... Ha ha Not so much .. He said he was afraid to leave the waiting room because he thought he would get lost.
We are all very anxious for tomorrow to be here and our prayers to be answered and Miss Emma will come out of surgery and have a speedy recovery. (Can you tell I'm a little nervous.. AND..AND...AND..)
As you lay your head down tonight I ask that you say a prayer for our entire family. Those that cant be here, PaPa Billy who is left at home to fend for himself because we stole Gramma Jan away, Kory & myself, Maddie who is on her first trip with Emma (call it "our first family vacation" if you will..by no means is it a vacation for us but it is a blessing to have Maddie here with us this time.) Pray for Gramma Jan since she has to be strong for all four of us. Most of all pray for Emma and her medical team this week. Remember God is good! Praise him for his work through our family!
Tuesday, July 17, 2012
Pssst.. Over here.. in the PICU crib...
Hello everyone!
First I want to thank everyone for all of your kind words, prayers and continued support. As most of you know I am back in the PICU at St. Johns. They discovered they I have a urinary tract infection, even though they were able to catch it early and start treating me like everything else other obstacles have come up. Don't you worry, I am in the best place I can be and they are taking great care of me! I did have to get a blood transfusion, between that and the fluids I started having a bad reaction. They noticed that I was filling up with fluids and quickly gave me some more medicine to help reduce the all the retention. The medicine must have helped because shortly after I heard them say how pretty I looked (was there any doubt) and along with my Tylenol and feeding I slept very peacefully for a few hours! Now I do have a little bit of a cough so they are keeping a close eye on me for pneumonia. My heart rate has been doing a lot better even hanging out as low as 112 at times, as I slept I heard Aunt Sami and Daddy politely discussing who was the reason for me to be relaxed... the jury may still be out on that one, it is more fun this way. My temperature has been doing better but did start going up again, 101.6 around my feeding at 1130p, of course it I was getting mad so once my belly is full, my Tylenol kicks in and I relax I am sure it will go down again. There was also some leaking from my g-tubey, but they cleaned me all up and will be keeping a close eye on that as well (sure hope they are quiet and let me and mommy sleep).
I think that is the short story for now, I love hearing everyone's get wells and concerns. But while I have you here can I ask a favor for my Mommy... puh puh puhleeeease? You see, every day even all good days, my routine takes quite a bit of time. My Mommy and Daddy both do a crazy great job at keeping me on schedule and getting me all that I need. This means very little sleep or down time for both my Mommy and Daddy. You can imagine how much more this changes when I am not feeling well. There is so many more things that are going on when I am staying in the PICU that I know Mommy and Daddy are extra tired and worried, but they just keep pushing on with out blinking an eye because this is just our life. We do get so many prayers, questions and well wishes on Mommy's phone, we love you all so much! There isn't much time in between the medicine, feeding, diapers, doctors and nurses in and out and all that entails in between. Mommy does not intend to worry anyone by not answering every message and phone call, she is just doing everything she can to make sure I am as happy and comfortable as I can be. So if you try to get in touch with Mommy I think she is doing her best to get general updates sent in mass however, I hope that when she does have even a few minutes of down time she is getting some rest cause she needs it too. Please be kind to Mommy and understand I am taking a lot... well all of her attention right now. It is hard for her to keep up with all the phone calls and messages with everything they are doing to get me healthy and back home. Thank you all for your understanding and your efforts to keep the phone calls and messages to a minimal amount.
Love, hugs and kisses,
Emma
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First I want to thank everyone for all of your kind words, prayers and continued support. As most of you know I am back in the PICU at St. Johns. They discovered they I have a urinary tract infection, even though they were able to catch it early and start treating me like everything else other obstacles have come up. Don't you worry, I am in the best place I can be and they are taking great care of me! I did have to get a blood transfusion, between that and the fluids I started having a bad reaction. They noticed that I was filling up with fluids and quickly gave me some more medicine to help reduce the all the retention. The medicine must have helped because shortly after I heard them say how pretty I looked (was there any doubt) and along with my Tylenol and feeding I slept very peacefully for a few hours! Now I do have a little bit of a cough so they are keeping a close eye on me for pneumonia. My heart rate has been doing a lot better even hanging out as low as 112 at times, as I slept I heard Aunt Sami and Daddy politely discussing who was the reason for me to be relaxed... the jury may still be out on that one, it is more fun this way. My temperature has been doing better but did start going up again, 101.6 around my feeding at 1130p, of course it I was getting mad so once my belly is full, my Tylenol kicks in and I relax I am sure it will go down again. There was also some leaking from my g-tubey, but they cleaned me all up and will be keeping a close eye on that as well (sure hope they are quiet and let me and mommy sleep).
I think that is the short story for now, I love hearing everyone's get wells and concerns. But while I have you here can I ask a favor for my Mommy... puh puh puhleeeease? You see, every day even all good days, my routine takes quite a bit of time. My Mommy and Daddy both do a crazy great job at keeping me on schedule and getting me all that I need. This means very little sleep or down time for both my Mommy and Daddy. You can imagine how much more this changes when I am not feeling well. There is so many more things that are going on when I am staying in the PICU that I know Mommy and Daddy are extra tired and worried, but they just keep pushing on with out blinking an eye because this is just our life. We do get so many prayers, questions and well wishes on Mommy's phone, we love you all so much! There isn't much time in between the medicine, feeding, diapers, doctors and nurses in and out and all that entails in between. Mommy does not intend to worry anyone by not answering every message and phone call, she is just doing everything she can to make sure I am as happy and comfortable as I can be. So if you try to get in touch with Mommy I think she is doing her best to get general updates sent in mass however, I hope that when she does have even a few minutes of down time she is getting some rest cause she needs it too. Please be kind to Mommy and understand I am taking a lot... well all of her attention right now. It is hard for her to keep up with all the phone calls and messages with everything they are doing to get me healthy and back home. Thank you all for your understanding and your efforts to keep the phone calls and messages to a minimal amount.
Love, hugs and kisses,
Emma
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Monday, July 16, 2012
Emma's Upcoming Surgery..Removing her Cataracts
Emma will be having cataracts removed from both eyes in the next couple of weeks. There is no set date yet because her infection is setting things back a little bit. The surgery will be performed by Dr. Lawrence Tychsen at the St Louis Children's Hospital.
At this time Emma has dense cataracts in both eyes. So if she does have any vision at all it is reduced to a fog.
Cataracts that occur in infants and children are unlike cataracts that occur in the an aged person. Pediatric cataracts require different instrumentation and techniques. The machine is used to remove the cataract is a combined vaccum and cutter. The part that enters the eye is made of stainless steel and is no thicker than a toothpick. It is inserted through a tiny hole that is made in the wall of the eye using a microscope. A second hole is placed to allow fresh fluid to be flushed into the eye. The cloudy lens is cut into pieces and vaccumed away. Depending upon the age of the child, it may be neccessary to remove the thick gel (vitreous) that fills the middle of the eye. Removing the gel can reduce thr chance of scarring.
Children usually get implant lens, contact lens, or glasses. Emma will get glasses until she is two years of age and then she will get implants. (possibly)
Emma has been fitted for glasses and they are being made at this time so that she has them in time for surgery.
At this time Emma has dense cataracts in both eyes. So if she does have any vision at all it is reduced to a fog.
Cataracts that occur in infants and children are unlike cataracts that occur in the an aged person. Pediatric cataracts require different instrumentation and techniques. The machine is used to remove the cataract is a combined vaccum and cutter. The part that enters the eye is made of stainless steel and is no thicker than a toothpick. It is inserted through a tiny hole that is made in the wall of the eye using a microscope. A second hole is placed to allow fresh fluid to be flushed into the eye. The cloudy lens is cut into pieces and vaccumed away. Depending upon the age of the child, it may be neccessary to remove the thick gel (vitreous) that fills the middle of the eye. Removing the gel can reduce thr chance of scarring.
Children usually get implant lens, contact lens, or glasses. Emma will get glasses until she is two years of age and then she will get implants. (possibly)
Emma has been fitted for glasses and they are being made at this time so that she has them in time for surgery.
Friday, July 6, 2012
Weighing In.. 11.0
Emma has reached an amazing 11 lbs. A huge blessing for Emma is that she has never lost weight..she has always gained.
We did have some difficulties with her throwing up a lot. When we were able to talk with her GI specialist and her dietician.. The dietician felt we needed to switch to a pump for feeds. Kory and I agreed. Emma was being fed through a large(60ml) suringe. She was only able to take approximently 70 ml (not quite 2.5 oz) ..
Now we have been on the pump for approximently two weeks and Emma is doing amazing. She hasnt thrown up once! AND she's up to 85ml per feed!
The pump has been a huge success. She eats more normal now.. Instead of being full in two minutes it takes 30 minutes.
The pump takes approximently ten minutes to prepare feed and ten minutes to clean up after feed. But its all worth it for Miss Emma ;)
Pictures of the pump are inclosed..
We did have some difficulties with her throwing up a lot. When we were able to talk with her GI specialist and her dietician.. The dietician felt we needed to switch to a pump for feeds. Kory and I agreed. Emma was being fed through a large(60ml) suringe. She was only able to take approximently 70 ml (not quite 2.5 oz) ..
Now we have been on the pump for approximently two weeks and Emma is doing amazing. She hasnt thrown up once! AND she's up to 85ml per feed!
The pump has been a huge success. She eats more normal now.. Instead of being full in two minutes it takes 30 minutes.
The pump takes approximently ten minutes to prepare feed and ten minutes to clean up after feed. But its all worth it for Miss Emma ;)
Pictures of the pump are inclosed..
Emma's Hearing: The Verdict is Still Out
Last week we had an appointment to confirm Emma's hearing diagnosis....
Excited and Nervous all at once.. Our hopes are that Emma can hear at least some.. However, if she is deaf that is just another challenge that Kory and I are ready for :)
Emma has never been nor ever will be a burden to us. She is a blessing! We love everything about her! The only disability in life is negativity!
Emma has A LOT of build up in her ears. She has to see an ENT that will clean her ears out then we go back to complete the ABR. (auditory brainstem response test)
At this time neither of Emma's eardrums are working. Please pray we are able to get some results soon. So she doesnt have to struggle with speech difficulties as well. We want to make things as accomidating as possible for our sweet baby girl!
Emma's Best Friend..
Emma has been blessed with an absolutely amazing big sister. She is the most loving and supportive four year old ever! Maddie is always giving her kisses and huggs. She works with her all the time. Maddie watches us do stuff with Emma, example: trying to get her to grasp things, moving things to her mouth, etc. Maddie plays with her all the time.
There times when Maddie is talking to us about Emma and I think to myself.. It is so unfair that she knows what all these medical supplies are at age four. She knows how to react in traumatic situations and she knows exactly what her conversation with a 9-1-1 operator should consist of. :/ Not exactly something a mother wants for her 4 year old. Although it makes me very proud!
Maddie is going to be the helping hand that lifts Emma up when she falls. She'll be the one to protect her from the stares of the public. Emma will never feel 'different' thanks to her amazing Big Sister. Maddie says God loves her very very much because he only gives babies like Emma to very special families! (from a four year old..that ways heavy on one's heart)
My daughters are amazing! I feel like I have the best life ever! Everything I do is for my baby girls!
:) trying my best to keep up with them and keep you all updated!
From our family to yours,
MAY GOD BLESS YOU AS MUCH AS HE HAS BLESSED US!
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