Amazing.
Support feels amazing. After posting my blog about my sweet Evelyn many of you reached out via email and comments on facebook to let me know you were thinking about us. It has truly been what I needed, a team of people praying, so I thank you.
I am being carefully optimistic that the formula is helping the weight issue. She looks bigger to me. I have a shipping scale that I have been compulsively setting her on but it's not accurate so I can't gain much hope through what it tells me! After a weekend at my parents to celebrate Jesus' birth and a lot of talk about what to do we've made some decisions.
Evie's last few tests came back okay but it doesn't convince me she doesn't have CF. My daughter sweats like crazy. You pick her up and her back and head are soaking wet. It's very strange. I decided to call the doctor and ask him about this issue. He told me that normally he wouldn't worry to much about a sweaty baby because every ones metabolic rate is different. He then asked me about ten other questions and after telling him she sounds congested and has a snotty nose he told me that she needs to be seen.
We go in on Wednesday and are going to talk about what to do and where to go. Hopefully she's gained something and they can keep ruling things out. I've decided that I am going to push pretty hard for the sweat test to get done, even if I have to pay out of pocket for it. My daughter's health is worth far more then money can buy.
I am trying to keep my head held high and a smile on my face. It's hard to wonder and it's even harder to keep my mind from focusing on the things it could be. Hopefully all these tests will just prove that I have a beautiful, strong, HEALTHY baby girl!
Thank you for all your support, prayers, emails and thoughts. We truly appreciate all the kindness.
Oh, and congrats to the Foley and Wright families on their new baby girls....Marian Foley and Clara Wright, both VERY beautiful angels.
Monday, December 27, 2010
Thursday, December 23, 2010
My Sweet Evelyn.
Yesterday was a truly emotional day for me. As you know, if you've been reading, that baby Evie isn't gaining weight. She is teeny for her age and I've been worried for about 6 weeks now. Well, yesterday was her big day.
We visited the doctor and I was prepared with questions and research and had my brave face on knowing that I may have to fight for answers. See, I wasn't going home with a simple, "she's just small", without a reason, a test, a diagnosis, something. Of course the nurse calls us back and does all the normal baby check things. Weight, height, head circumference and then a plethora of questions. She writes down all my concerns, charts Evie's growth and gets quiet. Next it's the Dr.'s turn. Dr. Ulrich is normally running late, today was no different. He comes in and asks why we were visiting.
I tell him my worries, I think it went something like this (holding back tears): My baby, she's not growing. She's four months and still in 0-3 clothes, size 1 diapers and they are both too big on her. She smiles, she looks at me, she wants to be strong and hold herself up. She spends time on her tummy but can't sustain very long. She eats a lot, 60z of milk every 4 hours, cereal twice a day. I don't know what to do. My hair is falling out and I cry about this. I am worried."
He is looking at her growth chart and says to me, "you're right, she's stopped growing". Showing me the growth chart he explains that at birth Evie was in the 90% and she is now between 5-10% (he said probably about 7%) for her age. He then explains if she would have stayed on a healthy weight gain since birth she should be about 75%. Her head and length are normal. He then starts testing some other things. He checks out her soft spot, looks good. Presses her belly, she farts, we both giggle. Her strength isn't where is wants it. He then checks her reflexes and gets very quiet.
He looks at me and says, "I think we need to test her for a few things." My heart drops. I am happy he is recognizing that there is an issue but I am again so scared. "We're growing to draw her blood and see how that comes out. We'll do a CBC (blood cell count), an ANA (to see if there is inflammation somewhere we can't see or feel), a thyroid test, and a few others." Gulp, "Okay". It was all I could muster out. "Then," he says, "I am going to have to see a specialized Pediatrician. Today. He works with babies just like Evie who are either premature or not growing as we expect. He is a great doctor and he'll know best what our plan should be". "Okay", I say again.
I then asked the question I really didn't want to know, "What could be causing this?". He starts, "Well, it could be thyroid, milk allergy, reflux, or something a bit more serious." Like what? "Cystic Fibrosis or a heart issue". I feel sick and he sees this. "By listening to her heart I've pretty much ruled out a heart issue. Cystic Fibrosis is rare, 1-3000 babies are born with it". He then goes on to explain to me that CF isn't something he is going to test for right now because there are so many other things he wants to rule out first but that Dr. Elaghaly (pronouced Al-leigh) may run more tests.
Fast forward 2 hours (after Evie gets her blood drawn and smiles during the entire thing, I have a complete meltdown in the bathroom, I call Bill and try to tell him what is going on and I drink a coffee so fast it makes me ill). I am now sitting in the waiting room of another Dr. The nurse comes and gets me and brings me into the room. Again, asks me a million and two questions. I get Evie naked and she runs a few tests. She informs me that Evie has been running a low-grade fever for her last 3 appointments and although she doesn't feel warm to us something is causing this fever. She then tests to see if there is the proper amount of O2 in her system. She passes!
The doctor comes in and gets right to business. He listens to her heart and lungs. Asks me if she is always congested (she has a cold) and tests her reflexes. He asks me something I knew would come up but was hoping I was wrong, "Does anyone in your family have any problems?". I explain to him that my cousin has spineabifida, my mom has this my dad's side has that and I had cancer. He then flat out asks me, "anyone have CF?". Not that I know of. He tells me that he is going to have to run some urine tests.
He places a catheter in little Evie and takes some urine from her. He tells me to hold tight, get a bottle ready and he wants to see her eat. So I get her dressed, make a bottle and we feed Evie. He thinks she is latching great, eating fine and her little bit of congestion doesn't seem to be slowing her down. He watches her burp and agrees we get a little more than normal out when she burps but that it isn't anything to be super concerned about. He leaves. I cry a little but hold myself together.
He comes in. All the initial tests have come back (there are still a few out) and her liver enzymes are high and her glucose is low. He tells me, "I think she is malnourished." I gave him a look and said, "I feed her. Six ounces. Every 4 hours."
He explains to me that he isn't concerned I am not feeding her. He is more concerned that she is not absorbing the nutrients in the milk. Basically it's going from mouth to diaper with little being taking in. This explains the super full diapers, the concentrated urine and her size. He puts her on this UBER expensive formula and tells me we need to feed her every 2 hours and wake her at night to eat. He tells me he doesn't expect that she will gain a huge amount of weight right away but that he would take 8 0z. (Yeah, me too, that's about all she's gained in 9 weeks)
So although we are still without firm answers as to why she isn't absorbing or whether it's something more serious or not, we have an answer. I purchased two cans of this crazy formula and then read that it's ONE DAY worth of bottles. Wow, good thing I love this baby because 1 month of formula is almost $1000! We started the regiment last night and at first I think she loved eating every two hours but after about the 4th feeding she was refusing to take her bottle. I called this morning and they said, to first try pushing it out to 3 hours and if that doesn't work lower it to 4 oz. but every 2 hours again.
Please say a prayer her tests for CF come back negative. This is an awful disease and I don't want her to have to deal with it. Please, also pray, that she gains weight and grows out of this deficiency. I know God has this all under control.
We visited the doctor and I was prepared with questions and research and had my brave face on knowing that I may have to fight for answers. See, I wasn't going home with a simple, "she's just small", without a reason, a test, a diagnosis, something. Of course the nurse calls us back and does all the normal baby check things. Weight, height, head circumference and then a plethora of questions. She writes down all my concerns, charts Evie's growth and gets quiet. Next it's the Dr.'s turn. Dr. Ulrich is normally running late, today was no different. He comes in and asks why we were visiting.
I tell him my worries, I think it went something like this (holding back tears): My baby, she's not growing. She's four months and still in 0-3 clothes, size 1 diapers and they are both too big on her. She smiles, she looks at me, she wants to be strong and hold herself up. She spends time on her tummy but can't sustain very long. She eats a lot, 60z of milk every 4 hours, cereal twice a day. I don't know what to do. My hair is falling out and I cry about this. I am worried."
He is looking at her growth chart and says to me, "you're right, she's stopped growing". Showing me the growth chart he explains that at birth Evie was in the 90% and she is now between 5-10% (he said probably about 7%) for her age. He then explains if she would have stayed on a healthy weight gain since birth she should be about 75%. Her head and length are normal. He then starts testing some other things. He checks out her soft spot, looks good. Presses her belly, she farts, we both giggle. Her strength isn't where is wants it. He then checks her reflexes and gets very quiet.
He looks at me and says, "I think we need to test her for a few things." My heart drops. I am happy he is recognizing that there is an issue but I am again so scared. "We're growing to draw her blood and see how that comes out. We'll do a CBC (blood cell count), an ANA (to see if there is inflammation somewhere we can't see or feel), a thyroid test, and a few others." Gulp, "Okay". It was all I could muster out. "Then," he says, "I am going to have to see a specialized Pediatrician. Today. He works with babies just like Evie who are either premature or not growing as we expect. He is a great doctor and he'll know best what our plan should be". "Okay", I say again.
I then asked the question I really didn't want to know, "What could be causing this?". He starts, "Well, it could be thyroid, milk allergy, reflux, or something a bit more serious." Like what? "Cystic Fibrosis or a heart issue". I feel sick and he sees this. "By listening to her heart I've pretty much ruled out a heart issue. Cystic Fibrosis is rare, 1-3000 babies are born with it". He then goes on to explain to me that CF isn't something he is going to test for right now because there are so many other things he wants to rule out first but that Dr. Elaghaly (pronouced Al-leigh) may run more tests.
Fast forward 2 hours (after Evie gets her blood drawn and smiles during the entire thing, I have a complete meltdown in the bathroom, I call Bill and try to tell him what is going on and I drink a coffee so fast it makes me ill). I am now sitting in the waiting room of another Dr. The nurse comes and gets me and brings me into the room. Again, asks me a million and two questions. I get Evie naked and she runs a few tests. She informs me that Evie has been running a low-grade fever for her last 3 appointments and although she doesn't feel warm to us something is causing this fever. She then tests to see if there is the proper amount of O2 in her system. She passes!
The doctor comes in and gets right to business. He listens to her heart and lungs. Asks me if she is always congested (she has a cold) and tests her reflexes. He asks me something I knew would come up but was hoping I was wrong, "Does anyone in your family have any problems?". I explain to him that my cousin has spineabifida, my mom has this my dad's side has that and I had cancer. He then flat out asks me, "anyone have CF?". Not that I know of. He tells me that he is going to have to run some urine tests.
He places a catheter in little Evie and takes some urine from her. He tells me to hold tight, get a bottle ready and he wants to see her eat. So I get her dressed, make a bottle and we feed Evie. He thinks she is latching great, eating fine and her little bit of congestion doesn't seem to be slowing her down. He watches her burp and agrees we get a little more than normal out when she burps but that it isn't anything to be super concerned about. He leaves. I cry a little but hold myself together.
He comes in. All the initial tests have come back (there are still a few out) and her liver enzymes are high and her glucose is low. He tells me, "I think she is malnourished." I gave him a look and said, "I feed her. Six ounces. Every 4 hours."
He explains to me that he isn't concerned I am not feeding her. He is more concerned that she is not absorbing the nutrients in the milk. Basically it's going from mouth to diaper with little being taking in. This explains the super full diapers, the concentrated urine and her size. He puts her on this UBER expensive formula and tells me we need to feed her every 2 hours and wake her at night to eat. He tells me he doesn't expect that she will gain a huge amount of weight right away but that he would take 8 0z. (Yeah, me too, that's about all she's gained in 9 weeks)
So although we are still without firm answers as to why she isn't absorbing or whether it's something more serious or not, we have an answer. I purchased two cans of this crazy formula and then read that it's ONE DAY worth of bottles. Wow, good thing I love this baby because 1 month of formula is almost $1000! We started the regiment last night and at first I think she loved eating every two hours but after about the 4th feeding she was refusing to take her bottle. I called this morning and they said, to first try pushing it out to 3 hours and if that doesn't work lower it to 4 oz. but every 2 hours again.
Please say a prayer her tests for CF come back negative. This is an awful disease and I don't want her to have to deal with it. Please, also pray, that she gains weight and grows out of this deficiency. I know God has this all under control.
Monday, December 20, 2010
Some people need a brain
Some people need a brain. Or at least a shock collar that zolts them when they are about to speak without thinking.
Last night my family was in the midst of enjoying a nice dinner at Ruby Tuesdays. Little baby Evie was doing great until the end of the meal when she decided it was her turn to munch on some goods. I picked her up out of her car seat and this was the conversation had between Billy, myself, and the lady next to us:
Lady: Oh, she is so cute! How old is she?
Me: She will be 4 months old on Christmas.
Lady: Really? She is so small.
Me: Yeah, she's a peanut.
Lady: How premie was she?
Me: She wasn't. She weighed 9lbs 6 oz.
Lady: Oh, is there something wrong with her?
Billy: That was rude.
Me: Nope, nothing is wrong with her. ( I really wanted to say, what is WRONG with you?)
Really? What is something was 'wrong' with her. What if she was sick, had a birth defect or ailment that was life threatening. Honestly. I know my baby is small. I worry, cry, research and lose sleep over it. There is no answer, as of yet, as to why she isn't gaining weight. It weighs on my heart and I just hope that she is okay.
I wish that the lady at Ruby Tuesday's was there when I went into the car and cried. I wish she was there when I prayed to God again last night that he help Evie grow and gain just a little weight. I wish she knew how much it weighs on me that I fear there might be something "wrong" with her. But mostly I wish (and hope) that I see her again, after Evie's appointment on Wednesday, to let her know my daughter is just fine. (Hopefully!)
If that lady were wearing a shock collar I would have held the button down extra long. Seriously, do some people really just not have brains?
Last night my family was in the midst of enjoying a nice dinner at Ruby Tuesdays. Little baby Evie was doing great until the end of the meal when she decided it was her turn to munch on some goods. I picked her up out of her car seat and this was the conversation had between Billy, myself, and the lady next to us:
Lady: Oh, she is so cute! How old is she?
Me: She will be 4 months old on Christmas.
Lady: Really? She is so small.
Me: Yeah, she's a peanut.
Lady: How premie was she?
Me: She wasn't. She weighed 9lbs 6 oz.
Lady: Oh, is there something wrong with her?
Billy: That was rude.
Me: Nope, nothing is wrong with her. ( I really wanted to say, what is WRONG with you?)
Really? What is something was 'wrong' with her. What if she was sick, had a birth defect or ailment that was life threatening. Honestly. I know my baby is small. I worry, cry, research and lose sleep over it. There is no answer, as of yet, as to why she isn't gaining weight. It weighs on my heart and I just hope that she is okay.
I wish that the lady at Ruby Tuesday's was there when I went into the car and cried. I wish she was there when I prayed to God again last night that he help Evie grow and gain just a little weight. I wish she knew how much it weighs on me that I fear there might be something "wrong" with her. But mostly I wish (and hope) that I see her again, after Evie's appointment on Wednesday, to let her know my daughter is just fine. (Hopefully!)
If that lady were wearing a shock collar I would have held the button down extra long. Seriously, do some people really just not have brains?
Monday, December 13, 2010
Capt. Joseph Schwab, you amaze me.
This post is going to be short and sweet. This past weekend I spent time with my parents, brother, sister-in-law and niece and her parents in Las Vegas. It was filled with walking, shopping, walking, sight-seeing, walking, good (expensive) food, sleeping, playing with Sophia, walking and walking. But, the reason we were there was so much more then the sight-seeing or good food. My brother, the one who used to practice his saxophone in the bathroom and forget his wallet, phone and/or dorm key each time he visited, graduated from WIC training.
WIC training, I found out at the graduation, is the most difficult schooling that any USAF member could ever go through. It is an elite schooling where very few members of the USAF are asked to commit six months of their lives too. It is hard. They write a graduate level paper, attend over 150 hours of classroom time, learn how to plan a war, actually plan and fly a war simulation. They eat, sleep and live WIC. My brother often refers to it lovingly as "a six month kick in the crotch".
I am so proud of my brother. He will forever be my silly big brother who laughs at stupid movies, forgets where he put his keys and reads books I'll never understand but now he is also able to plan a war to protect you and me. He is amazing.
I am also proud of my sister-in-law. She stands by him, supports him and runs their household(s), family, and daughter without complaining. She is an amazing mom to the SMARTEST 2.5 year old I have ever met. Without her selfless acts things in their house would be crazy. I am so glad my brother found her and that she is part of my family.
Congratulations Joe. Billy and I are so proud of you. You have out done yourself again.
WIC training, I found out at the graduation, is the most difficult schooling that any USAF member could ever go through. It is an elite schooling where very few members of the USAF are asked to commit six months of their lives too. It is hard. They write a graduate level paper, attend over 150 hours of classroom time, learn how to plan a war, actually plan and fly a war simulation. They eat, sleep and live WIC. My brother often refers to it lovingly as "a six month kick in the crotch".
I am so proud of my brother. He will forever be my silly big brother who laughs at stupid movies, forgets where he put his keys and reads books I'll never understand but now he is also able to plan a war to protect you and me. He is amazing.
I am also proud of my sister-in-law. She stands by him, supports him and runs their household(s), family, and daughter without complaining. She is an amazing mom to the SMARTEST 2.5 year old I have ever met. Without her selfless acts things in their house would be crazy. I am so glad my brother found her and that she is part of my family.
Congratulations Joe. Billy and I are so proud of you. You have out done yourself again.
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