XOXO
Dannis
- Posted using BlogPress from my iPhone
Wednesday, April 18, 2012
Trying to rest
Thanks for your prayers. Today was a roller coaster. I'm going to rest now but wanted to let you know surgery went great and she is resting and recovering in the room with us tonight. More tomorrow!!
XOXO
Dannis
- Posted using BlogPress from my iPhone
XOXO
Dannis
- Posted using BlogPress from my iPhone
Thankful
First off let me say thank you so much for all the prayers, vibes, words and support. It is truly amazing to know how many friends, loved ones and even strangers have given so much support and we thank you from the bottom of our hearts.
She did very good all day yesterday, the GI said she could try a bottle because "the intractables" usually have a very high volume of output and she wasn't displaying that before 4pm. But, when we FINALLY got her bottle from the pharmacy at 8:45 she took the bottle great but by then from 4:30 until later in the day she had already pooped too much, lost too many ounces of weight and her albumin count went down.
This morning, the GI dr. ordered a blood culture because a lot of times the stool can get into the bloodstream and cause a bacterial infection of the blood, so we are praying that culture does not produce anything. He said he wants to go ahead and do the central line and make sure we get this under control because she is not as bad as most intractable cases but she is not getting better, she is getting worse.
She has had a temperature since we got here on Sunday so that would normally be a concern when placing a central (PIC) line but because her white blood cells are a good number we will still have it placed tonight. When they put her under to do the line they are also going to scope her GI tract and do a biopsy of some places of her intestines. They will also place an nj tube from her nose into her small intestines to give food. SO. All that should give her the nutrients she needs.
We just appreciate the love, prayers and concerns. You cannot imagine how much I love you all and thank you so much. We know our little angel is tough and she will be fine but its still so hard to see such a little body have this pain and not be able to just do something to take it away. We are thankful to be here and have such good people taking care of us.
Side note:
Please support the Ronald McDonald Houses in your area. It really is unbelievable how nice it is to get away from a drab by hospital room the size of a closet for just 10mins and have a cup of coffee and a snack.
Thanks for you prayers. Keep 'em coming!!
Love, Dannis, Michael and AdaReece
Some beautiful flowers and bear from one of my best friends.... I have never met in person. We love you sugar and Liza Kate!
She did very good all day yesterday, the GI said she could try a bottle because "the intractables" usually have a very high volume of output and she wasn't displaying that before 4pm. But, when we FINALLY got her bottle from the pharmacy at 8:45 she took the bottle great but by then from 4:30 until later in the day she had already pooped too much, lost too many ounces of weight and her albumin count went down.
This morning, the GI dr. ordered a blood culture because a lot of times the stool can get into the bloodstream and cause a bacterial infection of the blood, so we are praying that culture does not produce anything. He said he wants to go ahead and do the central line and make sure we get this under control because she is not as bad as most intractable cases but she is not getting better, she is getting worse.
She has had a temperature since we got here on Sunday so that would normally be a concern when placing a central (PIC) line but because her white blood cells are a good number we will still have it placed tonight. When they put her under to do the line they are also going to scope her GI tract and do a biopsy of some places of her intestines. They will also place an nj tube from her nose into her small intestines to give food. SO. All that should give her the nutrients she needs.
We just appreciate the love, prayers and concerns. You cannot imagine how much I love you all and thank you so much. We know our little angel is tough and she will be fine but its still so hard to see such a little body have this pain and not be able to just do something to take it away. We are thankful to be here and have such good people taking care of us.
Side note:
Please support the Ronald McDonald Houses in your area. It really is unbelievable how nice it is to get away from a drab by hospital room the size of a closet for just 10mins and have a cup of coffee and a snack.
Thanks for you prayers. Keep 'em coming!!
Love, Dannis, Michael and AdaReece
Some beautiful flowers and bear from one of my best friends.... I have never met in person. We love you sugar and Liza Kate!
Tuesday, April 17, 2012
no words
There are no words to describe the range of emotions i have felt for the past 48 hours...or 4 months...or past year.
When I found out I was pregnant with AdaReece, I was overjoyed and ecstatic. With a little hint of dread, fear and despair that I may not be able to keep her, because I had a miscarriage in December prior to getting pregnant with her in March. As the pregnancy continued, I heard stories of friends and acquaintances losing their babies and I would worry myself sick over my little bun in the oven. I thought that was bad. I would hear of babies being sick or having a disease and think oh no, i could never handle that. Michael would gently tell me I worry too much and I need to relax. I understand that is what I should do and it would be so easy if i actually could do that.
I know God has a plan and that everything large and small happens in His time. I truly see evidence of that everyday. and i'm thankful for that. But there is no way to describe the anxiety that started in me when I held her for the first time, the first time she cried in one of her "screamfests," the first time she pooped on me. When I took her in and they told me she had Milk Soy Protein Intolerance, I had a pit in my stomach bigger than any fear I had ever felt and mix that with overwhelming guilt and a little more anxiety and you might get a smidge of what my feelings were at that time. Everyone told me at least you know why she's fussy, at least you can cut the dairy out or give her formula but there is some sort of responsibility and guilt and sadness I feel like some of the fault/blame must be mine.
Fast forward 2 months and we have a sick little girl. She has never had "normal" poop so I really can't say when the diarrhea started but I know she got a little worse on Friday the 13th. and then a little worse on Saturday and then her appetite decreased more each day as well and Sunday it was bad enough for us to take her to the pediatric emergency room at Erlanger. They admitted us from there and we are here now. The pediatrician and the GI docs are telling me that her intestines are inflamed and not absorbing nutrients and its a downward spiral because she needs the nutrients to heal but the body is pushing them out. Pushing out her albumin and other essential proteins and nutrients. The GI doctor describe it to me to think of her intestines as injured, like a 2nd degree burn that is fat and shiny and oozes clear liquid. Her intestines are supposed to be lined with villa that absorb the nutrients and crips are supposed to secrete stuff but she has no villas and the crips are squirting all her liquids out. {very dumbed down version of the process i'm sure} So right now she is on a nutritious feed IV, sometimes called TPN but hers is called PPN because its delivered on her periphery vein{dumb version} and if she poops a lot today she will have to go into surgery and have a central line placed to get her nutrients, if she doesn't poop too bad today she will get an ng tube place down her nose to her small intestine and they will give her that way.
Anyways, we are needing lots of healing and lots of faith. Please keep us in your prayers.
Thanks, Dannis
Here are some pics since we've been here.
And a video from last night:
When I found out I was pregnant with AdaReece, I was overjoyed and ecstatic. With a little hint of dread, fear and despair that I may not be able to keep her, because I had a miscarriage in December prior to getting pregnant with her in March. As the pregnancy continued, I heard stories of friends and acquaintances losing their babies and I would worry myself sick over my little bun in the oven. I thought that was bad. I would hear of babies being sick or having a disease and think oh no, i could never handle that. Michael would gently tell me I worry too much and I need to relax. I understand that is what I should do and it would be so easy if i actually could do that.
I know God has a plan and that everything large and small happens in His time. I truly see evidence of that everyday. and i'm thankful for that. But there is no way to describe the anxiety that started in me when I held her for the first time, the first time she cried in one of her "screamfests," the first time she pooped on me. When I took her in and they told me she had Milk Soy Protein Intolerance, I had a pit in my stomach bigger than any fear I had ever felt and mix that with overwhelming guilt and a little more anxiety and you might get a smidge of what my feelings were at that time. Everyone told me at least you know why she's fussy, at least you can cut the dairy out or give her formula but there is some sort of responsibility and guilt and sadness I feel like some of the fault/blame must be mine.
Fast forward 2 months and we have a sick little girl. She has never had "normal" poop so I really can't say when the diarrhea started but I know she got a little worse on Friday the 13th. and then a little worse on Saturday and then her appetite decreased more each day as well and Sunday it was bad enough for us to take her to the pediatric emergency room at Erlanger. They admitted us from there and we are here now. The pediatrician and the GI docs are telling me that her intestines are inflamed and not absorbing nutrients and its a downward spiral because she needs the nutrients to heal but the body is pushing them out. Pushing out her albumin and other essential proteins and nutrients. The GI doctor describe it to me to think of her intestines as injured, like a 2nd degree burn that is fat and shiny and oozes clear liquid. Her intestines are supposed to be lined with villa that absorb the nutrients and crips are supposed to secrete stuff but she has no villas and the crips are squirting all her liquids out. {very dumbed down version of the process i'm sure} So right now she is on a nutritious feed IV, sometimes called TPN but hers is called PPN because its delivered on her periphery vein{dumb version} and if she poops a lot today she will have to go into surgery and have a central line placed to get her nutrients, if she doesn't poop too bad today she will get an ng tube place down her nose to her small intestine and they will give her that way.
Anyways, we are needing lots of healing and lots of faith. Please keep us in your prayers.
Thanks, Dannis
Here are some pics since we've been here.
And a video from last night:
Thursday, March 15, 2012
Quote
Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.” – Joan Ryan
I copied this quote from another blog i read in all my "spare time" i have so many things that i want to do these days but tend to browse stuff on my phone instead...top things i need to do: update blog...check:) also need to upload and order photos, i take a ton on my phone and occasionally on my awesome camera...i will post some in a minute. update AR's baby book- why is this such a beast?!? clean out my piles...never ending stashes of things i cannot bare to part with or stand in my line of vision...
I try so hard not to compare AdaReece to other babies and myself to other moms but lately i have a lot of doubt in myself and my attitude on the inside, toward myself is bad. I have great days but really dark moments.
But right this second as i sit on my couch with my laptop on the boppy pillow, Cash laying beside me, Carter under the couch, AR upstairs snoring in her crib and Michael on a guys wrestling trip in St. Louis, I just want to make a post that being a mom is the hardest and most draining job I could ever imagine.{I am unbelievably tired right now but cannot sleep}
Being a mom is not physically hard, but i sweat almost every time she cries, i sweat at night in my bed and wake myself up in the middle of the 3-4 total hours of sleep i do get per night...but i'm ok with that. Its not mentally hard but parenting drains all sense from my brain. I can't make rational decisions because my brain is clouded with fear, doubt, exhaustion, stress. Its not that i don't thank God several times a day for her, she is a wonderful, bright, beautiful baby girl. But, I worry about what I'm doing wrong, what i don't know, what might happen... I guess this worry about her is only the beginning...
Monday we had our follow up with the GI doctor, Dr. Devoid. I really like him, he's very thorough and patient with all my questions. She is doing good on the Nutramagin formula she has been on for 5 weeks but still has traces of blood in her stool. He says that it can take up to 6 weeks for that to clear up so we keep testing her stool...ok. She was clinically doing better so we won't change her formula again. gotcha. He also prescribed some magic diaper rash powder to mix with desitin and crystalize the poop juice that comes out of her. Reflux: 3 weeks ago he took her off Zantac because he said she probably didn't need it. This week he put her back on it. because she spits up 2+ hours after eating and she spits up in her sleep. Deep Breath....VSD murmur: he detected 3 weeks ago is still there and he was going to discuss with our pediatrician....trying so hard not to totally freak out. (VSD is a most of the time something small and causes no problems, usually a tiny hole in the septal wall of the heart that closes on its own). He talked to me about her for a good while and we go back in May. We go to pediatrician in April(3 weeks) so i'm going to have a list ready to talk to her about all of these things again...Honestly, I don't want to complain because AR is generally healthy and 95% of the time she is happy as a lark BUT that 5% of the time she is hurting/screaming KILLS ME!! to the core. I die!!! "how do people do it?" "what do normal people do?" these are two questions I ask myself every time something happens (like diaper rash, screamfests, etc.) I can tell it is getting easier for me to handle the stress of motherhood but i just wanted to say I never imagined it would be this overwhelming.
NOW. Let me show off this perfect angel face baby girl:
We took those 3 month shots ON HER ACTUAL 3 Month birthday!!! and the mirror shots are from today, she was so cute laughing at herself it was cracking me up. She is the best, really. I'll post some awesome videos soon, she is grabbing stuff on her playmate and squealing and laughing and cooing. Growing up so fast...
XOXO, Dannis
I copied this quote from another blog i read in all my "spare time" i have so many things that i want to do these days but tend to browse stuff on my phone instead...top things i need to do: update blog...check:) also need to upload and order photos, i take a ton on my phone and occasionally on my awesome camera...i will post some in a minute. update AR's baby book- why is this such a beast?!? clean out my piles...never ending stashes of things i cannot bare to part with or stand in my line of vision...
I try so hard not to compare AdaReece to other babies and myself to other moms but lately i have a lot of doubt in myself and my attitude on the inside, toward myself is bad. I have great days but really dark moments.
But right this second as i sit on my couch with my laptop on the boppy pillow, Cash laying beside me, Carter under the couch, AR upstairs snoring in her crib and Michael on a guys wrestling trip in St. Louis, I just want to make a post that being a mom is the hardest and most draining job I could ever imagine.{I am unbelievably tired right now but cannot sleep}
Being a mom is not physically hard, but i sweat almost every time she cries, i sweat at night in my bed and wake myself up in the middle of the 3-4 total hours of sleep i do get per night...but i'm ok with that. Its not mentally hard but parenting drains all sense from my brain. I can't make rational decisions because my brain is clouded with fear, doubt, exhaustion, stress. Its not that i don't thank God several times a day for her, she is a wonderful, bright, beautiful baby girl. But, I worry about what I'm doing wrong, what i don't know, what might happen... I guess this worry about her is only the beginning...
Monday we had our follow up with the GI doctor, Dr. Devoid. I really like him, he's very thorough and patient with all my questions. She is doing good on the Nutramagin formula she has been on for 5 weeks but still has traces of blood in her stool. He says that it can take up to 6 weeks for that to clear up so we keep testing her stool...ok. She was clinically doing better so we won't change her formula again. gotcha. He also prescribed some magic diaper rash powder to mix with desitin and crystalize the poop juice that comes out of her. Reflux: 3 weeks ago he took her off Zantac because he said she probably didn't need it. This week he put her back on it. because she spits up 2+ hours after eating and she spits up in her sleep. Deep Breath....VSD murmur: he detected 3 weeks ago is still there and he was going to discuss with our pediatrician....trying so hard not to totally freak out. (VSD is a most of the time something small and causes no problems, usually a tiny hole in the septal wall of the heart that closes on its own). He talked to me about her for a good while and we go back in May. We go to pediatrician in April(3 weeks) so i'm going to have a list ready to talk to her about all of these things again...Honestly, I don't want to complain because AR is generally healthy and 95% of the time she is happy as a lark BUT that 5% of the time she is hurting/screaming KILLS ME!! to the core. I die!!! "how do people do it?" "what do normal people do?" these are two questions I ask myself every time something happens (like diaper rash, screamfests, etc.) I can tell it is getting easier for me to handle the stress of motherhood but i just wanted to say I never imagined it would be this overwhelming.
NOW. Let me show off this perfect angel face baby girl:
XOXO, Dannis
Thursday, March 1, 2012
Fun at the park
We met a friend today at the park and had the best time!
- Posted using BlogPress from my iPhone
- Posted using BlogPress from my iPhone
Sunday, February 12, 2012
Isn't she lovely
I am so enamored with our baby girl. She is just so beautiful and sweet and always smiles with her whole face. I can't get enough of her. Here are some pics from the past week...
Over at the Finley's watching the super bowl:
Just finished a bottle:
About to wake up from her morning nap:
Hanging out with momma...
Eyelashes are getting long:
Fell asleep at George's 1st bday party:
We had a busy fun past few days. We visited family on Thursday and Friday and it was our first time to spend the night away from our house. She did great. Then Saturday we went to our first birthday party! Today we were just hanging out around the house. Now time for bed.
Good night!
- Posted using BlogPress from my iPhone
Over at the Finley's watching the super bowl:
Just finished a bottle:
About to wake up from her morning nap:
Hanging out with momma...
Eyelashes are getting long:
Fell asleep at George's 1st bday party:
We had a busy fun past few days. We visited family on Thursday and Friday and it was our first time to spend the night away from our house. She did great. Then Saturday we went to our first birthday party! Today we were just hanging out around the house. Now time for bed.
Good night!
- Posted using BlogPress from my iPhone
Saturday, February 11, 2012
My Sunday
**this is from last sunday but blogger wouldnt work on my phone***I got caught up on some sleep this Sunday. Here is me in one of my glorious naps...
Keep in mind this is a king sized bed. Notice my head barely poking out of the covers on the edge of the bed. AdaReece in her luxurious nap nanny Chill, a super wedge sleeping device that I highly recommend. Carter is snuggled at her feet and pushing me closer to the edge at my back and Cash is on a pillow that is the actual center of the bed.
I love this pic. I could smile at it for hours...
But it's time for bed:)
Goodnight!
Dannis
- Posted using BlogPress from my iPhone
Keep in mind this is a king sized bed. Notice my head barely poking out of the covers on the edge of the bed. AdaReece in her luxurious nap nanny Chill, a super wedge sleeping device that I highly recommend. Carter is snuggled at her feet and pushing me closer to the edge at my back and Cash is on a pillow that is the actual center of the bed.
I love this pic. I could smile at it for hours...
But it's time for bed:)
Goodnight!
Dannis
- Posted using BlogPress from my iPhone
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