Yes, Russell, is a great daddy. But I'm talking about MY Daddy. Emma and I spent the night at my parents' house Wednesday night because I was working a lot closer to my parents' house than mine, and my mom was keeping Emma on Thursday anyway. I arose Thursday morning to a quiet house: my dad was at work, my mom was in their bedroom still asleep with Emma in her crib, which is also in their bedroom. Yes, Emma has her own crib at my parents' house. In the kitchen, my dad had left me the following note: "MB, I did not know if you wanted lunch fixed - I put fruit in a bowl (blue lid) for you and chicken salad sandwich on top of bowl. Also for breakfast - egg sandwich with little bit of cheese and bowl of fresh cut peaches and cottage cheese in bowl in fridge. You can take it with you or eat for breakfast. Dad." Then I turned to see the coffee already brewed, with a to-go cup, a spoon, Splenda, and sugar. What a sweet, sweet daddy I have. Here he is loving on my baby:
So then I ate my delicious breakfast and turned on my parents' video monitor that was in the den to see what Emma was doing...no Emma in her crib. I knew EXACTLY where she was: in the bed with my mom. Apparently Emma awoke at 6 am, and my mom put her in their giant king-sized bed with her. I snuck in there and found her laid out in the middle of their giant bed, snoozing away. So precious. And spoiled.
Emma has had a pretty good week this week. She has gotten upset and angry a little, but today was the first time she's gotten so angry (that we haven't been able to prevent) that she almost stopped breathing. But overall - a good week for Emma. She has run errands and gone shopping and been loved on by all kinds of people. She's really been interested in her hands this week - she can hardly keep them out of her mouth. She's been drooling like crazy, too, so all signs point to teething...except for the fact that there are no teeth, or even traces of teeth! She has gotten so much better with holding her head up, especially considering her head is in the 99th percentile of head circumference. Because she's figured out that life is more interesting sitting up, she now gets furious when we cradle her. Instead she wants to sit up on our shoulders or on my hip. The tricky part is that her ab and head control isn't perfect, so sometimes she nosedives and we have to be quick to catch her. Her most recent trick is waving her arm up and down, up and down, up and down. It started on Friday when she figured out that she could mess with the canopy on her swing. Then she started doing this ALL THE TIME, much to her daddy's delight (notice that Emma visibly realizes she's using her own hand at the end, tries to put in her mouth, but thinks that rubbing her sleepy eyes is better):
The other silly thing she did today was insist to be held with her head hanging virtually upside down. We have no idea why this was so comfortable; no matter how much Russell tried to move her, she just moved her head back into this position:
Lastly, Emma has done much better with her naps. She is the queen of fighting sleep, which makes for a grumpy baby at night. But here lately, she's been doing great with napping. She and I snuggled for a 2-hour nap on Friday; Emma has NEVER snuggled with me like this for that long, and it was the most wonderful feeling in the world. Side note: Lola looks so desperate for attention, it's pitiful. I promise we love her, despite the look on her face, which seems to say otherwise.
Saturday, July 31, 2010
Tuesday, July 27, 2010
What a summer it's been
I know, I know, I haven’t blogged lately. This summer is killing me. Killing me. I work long 10-hour days Monday through Thursday, and I come home to a fussy baby who goes to sleep shortly after I get home. I definitely do not get the best of Emma each day. My Fridays off are crammed with appointments, phone calls, and paperwork to get Emma's special little life off on the right foot. Long workdays don’t leave me much time with Emma, and they certainly don’t leave me with much time for anything else…like blogging! But I'm finally able to make time for all of you who love our sweet baby so much. Thank you for caring about her so much.
Last week wasn’t a great week for Emma. She had a lot of trouble breathing…her stridor was louder, she was congested, she choked more, and she stopped breathing every single day but Monday. We think she had some sinus drainage. Doctors have told us she’s too young to have sinuses…I don’t know what they mean EXACTLY by that statement, but she has all the nasal canals, so I think they can get congested. We think a lot of the choking was from this drainage. Her temper really got away from her last week and caused her stop breathing when she started that angry crying.
Emma didn’t have any doctor’s appointments last week. Russell’s parents, brother, sister-in-law, nephew, aunt, uncle, and cousins all went to the beach this week. This is the first time Russell and I haven’t gone with them since before we were married, but we were just apprehensive about taking Emma away from her doctors. So my mom had Emma by herself all week last week, and she loved it. I think my mom slept all weekend in recovery, but she still loved that time with Emma.
Lola is getting better and better with having Emma around, but she’s still pretty attention-hungry. Her Aunt Magee came to visit...Russell and I have always suspected that Lola loves Magee more than us. Lola gave us a bad name and made it look like we haven’t loved her at all:
Lola was very, very sick this weekend. I won’t go into the gory details, but Russell and I only slept for 5 hours Friday night…and it wasn’t because of the 4-month-old baby. Emma had a great weekend, though. She napped a lot, slept for 10 to 11 hours each night, and snuggled with her dad. One thing I'm going to nip in the bud, though, is watching NASCAR with Daddy. My daughter will NOT be a NASCAR fan. You mark my words.
One fun development is that a photographer came through the hospital and took some pictures back in May. She mailed me the discs with a few of the pictures on it. Here are a few of my favorites:
Sleeping in our pastor Stephen's arms...bonding as usual
Snuggling with Nan and Granddad
Being adored by Mama Jane and Granddaddy
Yesterday my mom and Mary Jane took Emma for her 4-month well-child visit. She got some shots and took them like a champ. And she’s also returned to the days of being short and fat. She weighs 15 lbs, 12 oz (85th percentile) and is 24.25 in. long (40th percentile). I know the numbers don’t lie, but does 15 lbs, 12 oz sound like the 85th percentile to you?? I just don’t think it’s THAT heavy for a 4-month-old child. Anyway, it was time for her to eat right as the appointment was over, so they ended up feeding her in the waiting room. Our cute little girl in her beautiful dress with a petite bow in her hair belched like a man and got a laugh out of the other families in the waiting room, as well as from the front office staff. Nice, Emma.
Emma has felt absolutely horrible tonight. I'd like to say that it's the shots and she'll be better tomorrow...but we're pretty sure it's gas. Poor baby. The pain and crying is making it harder for her to breathe, too, I think. And she's so tired...she just wants to go to sleep. She's been throwing up the past two days when she chokes after her bottles, too. So far it's another bad week for poor Emma.
Lastly, Emma has had a problem with the sun getting in her eyes, which is really unfortunate since she likes to be in the car and in her stroller so much. The shades on the car windows can only block so much. Enter Baby Banz sunglasses.
Side note: when Emma sits in her car seat, it pushes her head forward a little, so all her face and neck fat pushes forward; thus, the HUGE double chin, chipmunk cheeks, and pooched-out, pouty lips.
Last week wasn’t a great week for Emma. She had a lot of trouble breathing…her stridor was louder, she was congested, she choked more, and she stopped breathing every single day but Monday. We think she had some sinus drainage. Doctors have told us she’s too young to have sinuses…I don’t know what they mean EXACTLY by that statement, but she has all the nasal canals, so I think they can get congested. We think a lot of the choking was from this drainage. Her temper really got away from her last week and caused her stop breathing when she started that angry crying.
Emma didn’t have any doctor’s appointments last week. Russell’s parents, brother, sister-in-law, nephew, aunt, uncle, and cousins all went to the beach this week. This is the first time Russell and I haven’t gone with them since before we were married, but we were just apprehensive about taking Emma away from her doctors. So my mom had Emma by herself all week last week, and she loved it. I think my mom slept all weekend in recovery, but she still loved that time with Emma.
Lola is getting better and better with having Emma around, but she’s still pretty attention-hungry. Her Aunt Magee came to visit...Russell and I have always suspected that Lola loves Magee more than us. Lola gave us a bad name and made it look like we haven’t loved her at all:
Lola was very, very sick this weekend. I won’t go into the gory details, but Russell and I only slept for 5 hours Friday night…and it wasn’t because of the 4-month-old baby. Emma had a great weekend, though. She napped a lot, slept for 10 to 11 hours each night, and snuggled with her dad. One thing I'm going to nip in the bud, though, is watching NASCAR with Daddy. My daughter will NOT be a NASCAR fan. You mark my words.
One fun development is that a photographer came through the hospital and took some pictures back in May. She mailed me the discs with a few of the pictures on it. Here are a few of my favorites:
Sleeping in our pastor Stephen's arms...bonding as usual
Snuggling with Nan and Granddad
Being adored by Mama Jane and Granddaddy
Yesterday my mom and Mary Jane took Emma for her 4-month well-child visit. She got some shots and took them like a champ. And she’s also returned to the days of being short and fat. She weighs 15 lbs, 12 oz (85th percentile) and is 24.25 in. long (40th percentile). I know the numbers don’t lie, but does 15 lbs, 12 oz sound like the 85th percentile to you?? I just don’t think it’s THAT heavy for a 4-month-old child. Anyway, it was time for her to eat right as the appointment was over, so they ended up feeding her in the waiting room. Our cute little girl in her beautiful dress with a petite bow in her hair belched like a man and got a laugh out of the other families in the waiting room, as well as from the front office staff. Nice, Emma.
Emma has felt absolutely horrible tonight. I'd like to say that it's the shots and she'll be better tomorrow...but we're pretty sure it's gas. Poor baby. The pain and crying is making it harder for her to breathe, too, I think. And she's so tired...she just wants to go to sleep. She's been throwing up the past two days when she chokes after her bottles, too. So far it's another bad week for poor Emma.
Lastly, Emma has had a problem with the sun getting in her eyes, which is really unfortunate since she likes to be in the car and in her stroller so much. The shades on the car windows can only block so much. Enter Baby Banz sunglasses.
Side note: when Emma sits in her car seat, it pushes her head forward a little, so all her face and neck fat pushes forward; thus, the HUGE double chin, chipmunk cheeks, and pooched-out, pouty lips.
Saturday, July 17, 2010
Our blessings abound
Russell and I have been so blessed in so many ways over the course of our lives. In fact, we have had the conversation a few times about how surreal our lives have seemed. Long before Emma came along, it seemed like we were waiting for something catastrophic to happen because neither of us has ever really had to deal with the horrible, awful things that so many other people our age have experienced. We've both lost grandparents and have gone through some rough patches here and there but nothing REALLY awful. We know that God doesn't operate like that - He doesn't ration out heartbreak and difficulty; people don't have a lifetime agony quota. But still...how could we have really been THIS blessed?! We knew (and still know) that God loves us and blesses us. But that never explained why people who were seemingly so much more devoted to Him than us, so much more Godly than us, were haunted with tragedy after tragedy. So we were ultimately always asking what you're not supposed to ask: "Why do bad things happen to good people?"
And then on October 9, 2009, we found out that our little girl would be born with a birth defect. We had finally gotten our first official tragedy. Russell and I both recognized that this was the scary thing, the heartbreaking event, the dreaded moment we'll never forget. And there will be more of them...but this was the first time our lives seemed...real? I don't know if real is the word. We have struggled and continue to struggle daily with our frustration towards God - not because of the toll this whole experience has taken on us, but because of what is happening to our little girl. All of you parents out there know what I'm talking about - your own needs, wants, and feelings take a very distant back seat to those of your children.
So since our lives suddenly became "real," God, of course, hasn't stopped blessing us - we just see His blessings in new and unexpected ways now. First of all, our church, Earle Street Baptist Church, donated the proceeds of its annual 4th of July celebration to our family to help with medical expenses. Second, a church in Pickens called Holly Springs Baptist Church donated the proceeds of their Wednesday night hamburger plate supper to us. Third, and most importantly (not to downplay the generosity of these two churches), we are overwhelmed by the acts of love poured on us by our brothers and sisters in Christ, some whom we have met and others we have not. Emails, text messages, phone calls, Facebook messages, blog and guestbook comments, cards, meals, visits at home and in the hospital, gifts galore for our sweet baby...the list goes on and on. So for any of you who have experienced, currently are experiencing, or will experience some sort of life-changing tragedy, know that Hebrews 10:23 is TRUE: "Hold unswervingly to the hope you profess, for He who promised is faithful." God is faithful; just keep the hope and faith in Him, for He will STILL bless you in your storm.
This is a picture of Russell holding Emma at Earle Street's 4th of July celebration:
Here's a picture of the marquis from Holly Springs Baptist Church - thanks again for all your prayers and love for our family, and a special thanks to Sandee Blankenship and her youth group girls for all their hard work.
As I've mentioned before, Lola has moved back in with us, and things are getting a little better each day I think. Lola is still depressed because her life right now is the human equivalent of going to Disneyworld (my parents' house) for 3 months, then having to come home, only to find that a stranger is in your house who makes weird noises, smells funny "down there" sometimes, and everyone now loves this new, weird person more than you. I started this blog earlier today when Emma was sleeping, and Lola tried to take advantage of some alone time with me...she was so desperate to get to me yet nap at the same time that she ended up like this as I was typing on the floor:
So Dr. Troup expressed some concern about Emma's eyesight on Monday. We visited the pediatric opthomalogist on Friday, and Emma's problems are completely unrelated to spina bifida. Hallelujah! But it's still a problem - Emma is farsighted. The people we have told about this problem ask us how in the world the doctor could tell exactly how farsighted she is, and I have absolutely no idea. I've never had an eye exam before, so I don't even know how they do it with adults, much less babies. But basically she sees well far away and not so great up close, which is why one eye (and not always the same one) is starting to look in every once in a while. When things get close, she has to work harder to focus on it. We go back in 6 weeks, and we'll have to just see how she does until then. We'll take note if her eye-crossing gets better or worse, and the doctor will evaluate her eyes again. But eventually, 3 months, 6 months down the road...drumroll, please...she'll have to have glasses. GLASSES ON A 7-MONTH-OLD BABY! Who ever heard of such?! I don't think it's because her eyesight is THAT bad, but when her vision pathways are being set, it's important to take proactive steps to make sure it doesn't get significantly worse. Apparently it could actually damage her eyes. The doctor said she was a 5. A 5 what? I THINK that eyesight is measured on a scale of -14 to +14, one end being nearsighted, the other being farsighted. So 5 on a scale of 1 to 14 doesn't seem awful. Glasses on a baby has the potential to look very cute or very weird. I searched for some pictures of babies wearing glasses, and most of the frames that these kids are wearing...well let's just say that my daughter won't be caught dead in some of them. Just to get an idea of what a baby with glasses looks like, here's a 5-month-old in glasses. PLEASE NOTE: THIS IS NOT EMMA. And Emma has more hair, which I think would make the glasses look slightly more natural.
Emma is still eating like a champ and looks like it. I leave you with a big fat baby thigh:
And then on October 9, 2009, we found out that our little girl would be born with a birth defect. We had finally gotten our first official tragedy. Russell and I both recognized that this was the scary thing, the heartbreaking event, the dreaded moment we'll never forget. And there will be more of them...but this was the first time our lives seemed...real? I don't know if real is the word. We have struggled and continue to struggle daily with our frustration towards God - not because of the toll this whole experience has taken on us, but because of what is happening to our little girl. All of you parents out there know what I'm talking about - your own needs, wants, and feelings take a very distant back seat to those of your children.
So since our lives suddenly became "real," God, of course, hasn't stopped blessing us - we just see His blessings in new and unexpected ways now. First of all, our church, Earle Street Baptist Church, donated the proceeds of its annual 4th of July celebration to our family to help with medical expenses. Second, a church in Pickens called Holly Springs Baptist Church donated the proceeds of their Wednesday night hamburger plate supper to us. Third, and most importantly (not to downplay the generosity of these two churches), we are overwhelmed by the acts of love poured on us by our brothers and sisters in Christ, some whom we have met and others we have not. Emails, text messages, phone calls, Facebook messages, blog and guestbook comments, cards, meals, visits at home and in the hospital, gifts galore for our sweet baby...the list goes on and on. So for any of you who have experienced, currently are experiencing, or will experience some sort of life-changing tragedy, know that Hebrews 10:23 is TRUE: "Hold unswervingly to the hope you profess, for He who promised is faithful." God is faithful; just keep the hope and faith in Him, for He will STILL bless you in your storm.
This is a picture of Russell holding Emma at Earle Street's 4th of July celebration:
Here's a picture of the marquis from Holly Springs Baptist Church - thanks again for all your prayers and love for our family, and a special thanks to Sandee Blankenship and her youth group girls for all their hard work.
As I've mentioned before, Lola has moved back in with us, and things are getting a little better each day I think. Lola is still depressed because her life right now is the human equivalent of going to Disneyworld (my parents' house) for 3 months, then having to come home, only to find that a stranger is in your house who makes weird noises, smells funny "down there" sometimes, and everyone now loves this new, weird person more than you. I started this blog earlier today when Emma was sleeping, and Lola tried to take advantage of some alone time with me...she was so desperate to get to me yet nap at the same time that she ended up like this as I was typing on the floor:
So Dr. Troup expressed some concern about Emma's eyesight on Monday. We visited the pediatric opthomalogist on Friday, and Emma's problems are completely unrelated to spina bifida. Hallelujah! But it's still a problem - Emma is farsighted. The people we have told about this problem ask us how in the world the doctor could tell exactly how farsighted she is, and I have absolutely no idea. I've never had an eye exam before, so I don't even know how they do it with adults, much less babies. But basically she sees well far away and not so great up close, which is why one eye (and not always the same one) is starting to look in every once in a while. When things get close, she has to work harder to focus on it. We go back in 6 weeks, and we'll have to just see how she does until then. We'll take note if her eye-crossing gets better or worse, and the doctor will evaluate her eyes again. But eventually, 3 months, 6 months down the road...drumroll, please...she'll have to have glasses. GLASSES ON A 7-MONTH-OLD BABY! Who ever heard of such?! I don't think it's because her eyesight is THAT bad, but when her vision pathways are being set, it's important to take proactive steps to make sure it doesn't get significantly worse. Apparently it could actually damage her eyes. The doctor said she was a 5. A 5 what? I THINK that eyesight is measured on a scale of -14 to +14, one end being nearsighted, the other being farsighted. So 5 on a scale of 1 to 14 doesn't seem awful. Glasses on a baby has the potential to look very cute or very weird. I searched for some pictures of babies wearing glasses, and most of the frames that these kids are wearing...well let's just say that my daughter won't be caught dead in some of them. Just to get an idea of what a baby with glasses looks like, here's a 5-month-old in glasses. PLEASE NOTE: THIS IS NOT EMMA. And Emma has more hair, which I think would make the glasses look slightly more natural.
Emma is still eating like a champ and looks like it. I leave you with a big fat baby thigh:
Monday, July 12, 2010
Well that was unexpected
Today was Emma's pre-surgery appointment with Dr. Troup. Dr. Troup started by asking us how Emma's been doing in general. We gave him our report of Emma's life for the past 3 weeks since we saw him. After we were done with that, he said, "It sounds like she's doing ok. That being said, let's talk about whether or not we want to do this surgery next week." And then I remembered what kind of person we're dealing with - he errs on the side of caution and schedules OR's just in case he needs them. I knew he wanted to talk to us about the surgery before it actually happened, but it had not occurred to me that the surgery could be optional right now. Dr. Troup is going out of town for 10 days after Emma's surgery, and he wanted to know if we felt comfortable with him doing the surgery and then leaving. Without even consulting Russell, I said, "NO. I am NOT comfortable with that." Luckily, Russell feels the same way. Well, either he feels the same way or just decided that now is not the time to disagree with me. Anyway, Dr. Troup feels that because Emma is doing about the same overall (improving in some areas, getting worse in others), there's no immediate rush to do this surgery. That's a very positive thing! He feels that there's a chance she could kinda outgrow this muscular problem in her throat. So if you feel led to pray for her specifically, that would be the prayer I think - that her throat muscles would strengthen and that the neurological connections in her brain stem controlling them would work properly.
We will have another couple of MRI's of Emma's head and spine, as well as another swallowing study, in 4 to 6 weeks. Dr. Troup will then look at all those results and compare them to the ones Emma had 4 weeks ago. Let's start with her head: if the Chiari malformation still looks pretty bad, and Emma's symptoms either get worse or don't improve at all, he will go in and remove some bone. Now moving on to the syrinx (cyst filled with spinal fluid) in her spinal cord: If the syrinx looks the same in a month as it did a month ago, he may just do the Chiari decompression. Allowing her brain stem more room will also allow the spinal fluid to flow up and down her spine more freely. This means that the syrinx could drain on its own. OR if the syrinx looks much, much worse in a month than it did a month ago, Dr. Troup will insert a needle into her spinal cord during the same surgery to drain the fluid. When you're dealing with infants, it's best to wait as long as possible to allow them to mature as much as possible. On top of that, if an infant has respiratory problems, you want to intubate them and put them under anesthesia as little as possible...so if Emma needs both surgeries, Dr. Troup would prefer to do them at the same time.
Another unexpected development is that Emma has started to go a little cross-eyed. Not awful, but every once in a while, she looks a little cross-eyed and then she stops. We asked Dr. Troup about it and he said that (1) if a child JUST has spina bifida, she could have vision problems; (2) if a child JUST has hydrocephaly, she could have vision problems; and (3) if a child JUST has a Chiari malformation, she could have vision problems. Emma has all 3, so Dr. Troup was not surprised AT ALL that Emma's eyes were starting to cross a little. He recommended us to a pediatric opthamologist, and we see him on Friday. It didn't sound like we needed to panic about Emma's eyesight because catching it early is key, I think. With infants, if they start to go cross-eyed, they start seeing double. As the brain is developing and vision pathways are being set, the brain will basically just shut down one eye so that the other eye is the good, functioning eye. Clearly, you don't want that to happen. Of course, we may get to the opthamologist Friday, and they may say that there's nothing to be concerned about. We'll see.
All of this progress today has really served to confirm all of the decisions we've made and has made me feel a little bit better about God's plan. I've been trusting Him all along, even when my heart was questioning Him, and today just seemed to be a positive, forward-looking day in the midst of weeks of just enjoying the present because we don't know what will happen tomorrow. We still don't know what will happen tomorrow, next week, next month, but it's really nice to get some reassurance about Emma's current medical state.
We will have another couple of MRI's of Emma's head and spine, as well as another swallowing study, in 4 to 6 weeks. Dr. Troup will then look at all those results and compare them to the ones Emma had 4 weeks ago. Let's start with her head: if the Chiari malformation still looks pretty bad, and Emma's symptoms either get worse or don't improve at all, he will go in and remove some bone. Now moving on to the syrinx (cyst filled with spinal fluid) in her spinal cord: If the syrinx looks the same in a month as it did a month ago, he may just do the Chiari decompression. Allowing her brain stem more room will also allow the spinal fluid to flow up and down her spine more freely. This means that the syrinx could drain on its own. OR if the syrinx looks much, much worse in a month than it did a month ago, Dr. Troup will insert a needle into her spinal cord during the same surgery to drain the fluid. When you're dealing with infants, it's best to wait as long as possible to allow them to mature as much as possible. On top of that, if an infant has respiratory problems, you want to intubate them and put them under anesthesia as little as possible...so if Emma needs both surgeries, Dr. Troup would prefer to do them at the same time.
Another unexpected development is that Emma has started to go a little cross-eyed. Not awful, but every once in a while, she looks a little cross-eyed and then she stops. We asked Dr. Troup about it and he said that (1) if a child JUST has spina bifida, she could have vision problems; (2) if a child JUST has hydrocephaly, she could have vision problems; and (3) if a child JUST has a Chiari malformation, she could have vision problems. Emma has all 3, so Dr. Troup was not surprised AT ALL that Emma's eyes were starting to cross a little. He recommended us to a pediatric opthamologist, and we see him on Friday. It didn't sound like we needed to panic about Emma's eyesight because catching it early is key, I think. With infants, if they start to go cross-eyed, they start seeing double. As the brain is developing and vision pathways are being set, the brain will basically just shut down one eye so that the other eye is the good, functioning eye. Clearly, you don't want that to happen. Of course, we may get to the opthamologist Friday, and they may say that there's nothing to be concerned about. We'll see.
All of this progress today has really served to confirm all of the decisions we've made and has made me feel a little bit better about God's plan. I've been trusting Him all along, even when my heart was questioning Him, and today just seemed to be a positive, forward-looking day in the midst of weeks of just enjoying the present because we don't know what will happen tomorrow. We still don't know what will happen tomorrow, next week, next month, but it's really nice to get some reassurance about Emma's current medical state.
Sunday, July 11, 2010
Finally, a little self-expression
Hey, friends! This is Emma. Mommy FINALLY let me blog for myself. She's spent all these months blogging about me but has never let me blog on my own.
I've had a great weekend. Mommy stayed with me all day Friday because she doesn't have to work on Fridays in the summer. I had a few visitors, and then I ran some errands with Mommy and her best friend and my unofficial aunt, Holly. We went to Target, and I loved riding around in the cart. Mommy was surprised at how quiet I was. I usually breathe VERY loudly, and people stare at me...Mommy and Daddy think they stare because I like to breathe so loudly, but I think it's because I'm so beautiful.
On Saturday I let Mommy and Daddy sleep until 7:45, and I had a great morning. I talked to Daddy and hit him in the face a lot.
I had a bath, which I really enjoy.
Then Mommy washed my hair the way Dawn, my NICU nurse, taught her. I LOVE to have my hair washed.
And finally I took a nice little nap in my swing in my bathrobe.
In the afternoon, I started feeling kinda bad. I've been very cranky this weekend because I've had a lot of gas. I used to get embarrassed at how much Mommy talks about it on this blog, but now I just own it...I even poot around visitors and strangers now. Daddy's not a great influence, either..hehe. I wanted to nap on Saturday, but I just couldn't miss anything. Pretty much everyone who knew her tells me that I'm just like my great-grandma, Mama Dot. Dot was nosy and didn't like to miss anything - that's why I don't like to nap! I'm really afraid I'm going to miss something exciting! So not being able to nap and being gassy makes me cranky later in the day. Mommy and Daddy have some friends from church, Rob and Holly and Dan and Joyce, who love our family very much. They've been praying for me for a very long time. We all went to Rob and Holly's house to eat dinner Saturday night. I just wish that I had felt better when I was there. I got pretty fussy, but everybody passed me around on a pillow on their laps, and that made my tummy feel much better. I got very spoiled to sleeping on pillows in the NICU. After I got my last bottle of the day, I felt GREAT, and Joyce held me in her lap during dinner. I talked to her a little, but no one could quite understand what I was saying. I type much better than I speak. Anyway, I finally fell asleep for good on the pillow and snoozed the night away.
After we left, I went straight to spend the night at my Granddad and Nan's house. What fun that was! I slept great and had a great morning. Nan took me to visit her Sunday School class, and they LOVED me. I felt like I had bunches and bunches of grandmothers! Then around noon on Sunday I was playing with Nan and talking to her a lot when I suddenly stopped breathing. Nan tells me it was very scary and upsetting, but after a couple minutes I started breathing again. But phew, it was exhausting. I could barely muster up the energy to eat, and then I just didn't feel good until Daddy put me on my tummy on his lap. After that, I slept for 2 and a half hours, which is very unusual for me. I slept on Daddy's lap and then in the car as Mommy and Daddy ran lots of errands. When I woke up, I ate and talked to Mommy for a while, but then my tummy started to hurt again. I just finished eating my last bottle, and I'll be going to bed soon. Here's a quick picture of me looking at my outstretched hand, which is fascinating me here lately.
I've had a great weekend. Mommy stayed with me all day Friday because she doesn't have to work on Fridays in the summer. I had a few visitors, and then I ran some errands with Mommy and her best friend and my unofficial aunt, Holly. We went to Target, and I loved riding around in the cart. Mommy was surprised at how quiet I was. I usually breathe VERY loudly, and people stare at me...Mommy and Daddy think they stare because I like to breathe so loudly, but I think it's because I'm so beautiful.
On Saturday I let Mommy and Daddy sleep until 7:45, and I had a great morning. I talked to Daddy and hit him in the face a lot.
I had a bath, which I really enjoy.
Then Mommy washed my hair the way Dawn, my NICU nurse, taught her. I LOVE to have my hair washed.
And finally I took a nice little nap in my swing in my bathrobe.
In the afternoon, I started feeling kinda bad. I've been very cranky this weekend because I've had a lot of gas. I used to get embarrassed at how much Mommy talks about it on this blog, but now I just own it...I even poot around visitors and strangers now. Daddy's not a great influence, either..hehe. I wanted to nap on Saturday, but I just couldn't miss anything. Pretty much everyone who knew her tells me that I'm just like my great-grandma, Mama Dot. Dot was nosy and didn't like to miss anything - that's why I don't like to nap! I'm really afraid I'm going to miss something exciting! So not being able to nap and being gassy makes me cranky later in the day. Mommy and Daddy have some friends from church, Rob and Holly and Dan and Joyce, who love our family very much. They've been praying for me for a very long time. We all went to Rob and Holly's house to eat dinner Saturday night. I just wish that I had felt better when I was there. I got pretty fussy, but everybody passed me around on a pillow on their laps, and that made my tummy feel much better. I got very spoiled to sleeping on pillows in the NICU. After I got my last bottle of the day, I felt GREAT, and Joyce held me in her lap during dinner. I talked to her a little, but no one could quite understand what I was saying. I type much better than I speak. Anyway, I finally fell asleep for good on the pillow and snoozed the night away.
After we left, I went straight to spend the night at my Granddad and Nan's house. What fun that was! I slept great and had a great morning. Nan took me to visit her Sunday School class, and they LOVED me. I felt like I had bunches and bunches of grandmothers! Then around noon on Sunday I was playing with Nan and talking to her a lot when I suddenly stopped breathing. Nan tells me it was very scary and upsetting, but after a couple minutes I started breathing again. But phew, it was exhausting. I could barely muster up the energy to eat, and then I just didn't feel good until Daddy put me on my tummy on his lap. After that, I slept for 2 and a half hours, which is very unusual for me. I slept on Daddy's lap and then in the car as Mommy and Daddy ran lots of errands. When I woke up, I ate and talked to Mommy for a while, but then my tummy started to hurt again. I just finished eating my last bottle, and I'll be going to bed soon. Here's a quick picture of me looking at my outstretched hand, which is fascinating me here lately.
Thursday, July 8, 2010
Happy great-grandmothers
So Emma has two great-grandmothers, Audrey and Dot, gazing down on her from heaven, proud as can be that she has a little bit of both of them in her: Emma has a pretty bad temper that goes from 0 to 60 in 3 seconds, and she will let you know EXACTLY what she thinks about what you're doing right at that moment. Emma's temper has gradually gotten worse - more screaming and crying over the least little thing, and then her throat starts to close up. That's what's so bad about the temper. Crying because she has a tummyache or a dirty/wet diaper, is hungry or tired...those are different cries, and her throat doesn't close. But for some reason the stress and force of an angry cry makes her throat start to close up, and then we have to try to get her out of it. Then she kind of comes to and gets all groggy. It's all very strange and scary. She started off this way Wednesday night, but then the crying grew into a screaming, cat-like cry that we've never, ever heard before. It was so loud and new that I took her temp twice, thinking that maybe this was a new sickness she'd never experienced. But...no temperature. Our best guess now is that she was sleepy, mad, and had a tummyache all at the same time. Russell put Emma tummy down on a pillow on his lap, and she eventually calmed down and went to sleep. Then came the turning point: the transition to her crib upstairs. I tried to convince Russell that he could sleep in the recliner, but he wasn't buying it. So I carried the little princess upstairs on her pillow...can you believe how spoiled she is?! But if you've had a screaming, crying baby calm down, you do everything you have to to keep the peace.
Thankfully, I got Emma upstairs and in her crib without incident.
Emma's had some more gas pain today - pretty bad pain, actually. So tonight Russell has her draped across his lap on her tummy again, in her good relief position. Lola went back to my parents' house for a few days and came back home again today, so she hasn't been left here at home by herself to act up again. But she sure has become less scared and intimidated by Emma. In this picture, Lola is laid out up against Emma's legs while Russell scratches her belly...and with her head completely hanging off the couch. I have no idea how this is comfortable, but I'm typing this 15 minutes after I just took that picture, and her head is still hanging off, upside down. I may need to make sure she's still alive.
Well, that's it for now I guess. Oh, wait, I did find out a little bit of information about Emma's Chiari malformation decompression surgery from another mom whose child had it and from Vicki, Dr. Troup's nurse. We go to see Dr. Troup on Monday to talk about the surgery and just get more information. Emma will be in the hospital for approximately a week, and she'll most likely be able to lie on her back. The incision will probably be at the top or middle of the back of her neck; it just depends on how far down her brain stem is pulled into her spinal column. I don't know exactly how far down it is right now, but I think I'll find that out on Monday when we meet with Dr. Troup and Vicki.
I have a busy weekend ahead, but I hope to have time to blog a little. Everyone have a fantastic weekend!
Thankfully, I got Emma upstairs and in her crib without incident.
Emma's had some more gas pain today - pretty bad pain, actually. So tonight Russell has her draped across his lap on her tummy again, in her good relief position. Lola went back to my parents' house for a few days and came back home again today, so she hasn't been left here at home by herself to act up again. But she sure has become less scared and intimidated by Emma. In this picture, Lola is laid out up against Emma's legs while Russell scratches her belly...and with her head completely hanging off the couch. I have no idea how this is comfortable, but I'm typing this 15 minutes after I just took that picture, and her head is still hanging off, upside down. I may need to make sure she's still alive.
Well, that's it for now I guess. Oh, wait, I did find out a little bit of information about Emma's Chiari malformation decompression surgery from another mom whose child had it and from Vicki, Dr. Troup's nurse. We go to see Dr. Troup on Monday to talk about the surgery and just get more information. Emma will be in the hospital for approximately a week, and she'll most likely be able to lie on her back. The incision will probably be at the top or middle of the back of her neck; it just depends on how far down her brain stem is pulled into her spinal column. I don't know exactly how far down it is right now, but I think I'll find that out on Monday when we meet with Dr. Troup and Vicki.
I have a busy weekend ahead, but I hope to have time to blog a little. Everyone have a fantastic weekend!
Monday, July 5, 2010
New babies!
What a fantastic two days! Our friends, Scott, Laura and big sister Brooke, welcomed baby girl Presley Anne to their family on Sunday morning, and Candace, Tom, and big sister Melaina welcomed baby girl Clara Faye on Monday morning! Congratulations to our beloved friends!
In other 4th news, our church held its annual 4th of July celebration as a benefit for me, Russell, and Emma to help with Emma's medical expenses. What a fun and humbling night it was. Here's a pic of our pastor, Stephen, holding a sleeping baby Emma. Let me tell you something...two things actually: that man loves our Emma, and she loves to fall asleep in his arms. They have a connection.
Our church has always made us feel loved, no doubt about that...but God continues to overwhelm us with His love poured out through our church family. I don't think that we will ever fully understand the extent of God's love for us in our time here on earth, no matter how many hours you spend in prayer, studying His Word, doing Bible studies, listening to sermons, or engaging in intellectual religious conversations. But that doesn't mean that we don't increasingly understand it to a certain extent while we ARE here. This next point may be up for some debate, but just go with it for now. There are 4 ways through which God speaks to us: His word, prayer, other people, and circumstances. God has made Himself quite known to us in all of these ways since Emma's diagnosis in October, and He continues to do so in all of these ways. I must say, though, that He's a doing a bang-up job of communicating with us through our brothers and sisters in Christ. Just when I think I couldn't be more overwhelmed by the support and prayers of our friends and family, He throws something else at us to prove me wrong...and our church family is the perfect example of that. The 4th of July celebration was an unforgettable celebration of freedom and God's love. Let me assure you, no one felt it more than us. The money that was raised for our family will help us tremendously...Emma's turning out to be quite an expensive baby. Which leads me to my next big announcement...
I got a phone call last Thursday afternoon to inform me that Emma's Chiari decompression surgery has been scheduled for Tuesday, July 20 at 8 am. This was both expected and unexpected. The surgery itself was expected. The day and time already being set was unexpected. A few weeks ago, Dr. Troup ordered a swallow study, and he said we'd follow up afterwards. We were all on the same page that the next step would be Emma's Chiari decompression at some point. The swallow study was two weeks ago, so I called last week to follow up, just like he said. It turns out that Dr. Troup and his nurse are out of town until Tuesday (tomorrow) - good for them! I can't imagine that a brain surgeon gets much of a break. So then last Thursday, I get a phone call from a surgery scheduler saying that before he went out of town, he ordered the surgery scheduled...didn't see THAT coming! So here we are, waiting for a surgery in two weeks, and I have absolutely no clue what this surgery will involve. I can Google the surgery just as well as the next guy, but that still doesn't really tell me about MY daughter's surgery. Every one of these surgeries is different for each person because each person's malformation is unique. In fact, Dr. Troup told us that Emma's is the most unique he's ever seen - unlike anything he's seen at a seminar, in a textbook, etc. So I have no idea how long the surgery will take, how long she'll be in the hospital, how long before we'll see results (if we see them at all), if she can lie on her back...so I kindly and respectfully ask for you to please not ask me any questions about it quite yet. When I say I don't know, I mean I don't know. You and I aren't dating, doing that "yes means no and no means yes" stuff. I really don't know anything. Sorry to be so testy, but this surgery scares me enough without a lot of questions because it's less routine, less common, more dangerous, and more likely to not improve anything with Emma's swallowing function, unfortunately. But it's still something that has to be done for other reasons down the road.
Emma is spending the night with my parents tonight...pray for them, even though most of you will read this blog after they've endured the night with Emma. Pray for their sanity and for good quality napping tomorrow. They were so excited and so precious about it. I of course had to send Emma off with plenty of changes of clothes and a diaper bag full of travel paraphernalia...if you know my mom at all, you know there's no telling what kinds of plans she has for Emma. But it all depends on how Emma feels and on how my mom's back feels. She pulled her back the other day, and lifting a 14-pound baby isn't easy :( Poor Nan. Pray for her back, too.
Lola, our 14-pound Shih-Tzu/Pekingnese mix, moved back in this weekend. We thought she was adjusting relatively well to Emma. She's jealous, obviously, and maybe a little depressed that she's not the center of attention anymore, but she's ok. Lola is getting used to Emma's noises, and we just generally keep an eye on her. We know Lola's "I-don't-know-who-you-are-and-I'll-snap-at-you-over-sudden-movements" look, so we're keeping a watch out for that until she knows and (maybe) loves Emma. Like I said, we THOUGHT Lola was adjusting. See, Lola gets mad when we leave her sometimes, and she pushes her food bowl around the kitchen to scatter a little bit of food on the floor. Then when we get home, she feels guilty and eats it all off the floor. The only time she destroys the kitchen floor with food is when there has been a thunderstorm or fireworks. Oh, and she can't move the water bowl easily because it's a really heavy ceramic bowl...for a reason. So we came home on the 4th after fireworks had probably gone off all over the place, and food was everywhere. Reasonable. And we felt kinda sad for our scared puppy. This afternoon we took Emma on an errand outing, and this is what we came home to:
Scared puppy?? Oh no. Bad puppy. Spiteful puppy. I don't know if you can tell from that bottom picture, but Houdini managed to scoot her water bowl and slosh water 4 feet from the bowl's starting point. And these are only shots of PART of our kitchen. I'll be interested to see how long this goes on.
One of the errands we ran with Emma today was to Bed, Bath, and Beyond. You all know how narrow those aisles are. One day, I think I'll have probably had it up to here (envision vigorous hand gesture) and purposefully ram a shopping cart or Emma's stroller (less violent ramming with her in it, of course) into a display of less fragile/less expensive things...the clearance table perhaps...just to make a point. So there we are, sucking in just to get down the aisles to pick out new sheets. I say new, but they're the exact same sheets we've had since we got married, and we just keep getting new ones because we have an addiction to Beech sateen sheets. Ahhhh. They have this new color of green that's beautiful, so we decided to go with those. I believe our (maybe my??) exact words were, "Sure, they'll match the green in our room, there's a lot of color in our duvet cover to tie it together." Famous last words. Horrible idea. Worst decision we've made in a while. I'm sure any interior designer will tell you that shades of green don't "kind of" match - it's either dead on, or it's a disaster, and you BETTER bring a swatch with you. Poor Russell got home and put those bad boys on the bed, only to realize the mistake we made and call me in. It looked like someone had guacamoleed our bed. And our bedroom colors are red, soft gold, tan, and mossy green. Too bad I forgot to take a picture of it before I meticulously refolded the sheets back into that tiny little bag they come in. It's like folding a map, only worse, because I'm trying to make shiny, slippery, sateen sheets look unused (which they are), yet an amateur folder obviously has stuffed them back into a bag.
Ok, I'll cut it off now and leave you with the latest in Emma's development. Baby steps here (literally), but still steps nonetheless. We think Emma's going to be a lefty. She put her left fist in her mouth before her right and still prefers it, and she started reaching for our faces today (with her left hand) when we were talking to her. Actually tonight, I think she was trying to rip the lips right off my face. Emma, you've got a pair of your own - leave mine alone. So here she is reaching for Daddy's face.
In other 4th news, our church held its annual 4th of July celebration as a benefit for me, Russell, and Emma to help with Emma's medical expenses. What a fun and humbling night it was. Here's a pic of our pastor, Stephen, holding a sleeping baby Emma. Let me tell you something...two things actually: that man loves our Emma, and she loves to fall asleep in his arms. They have a connection.
Our church has always made us feel loved, no doubt about that...but God continues to overwhelm us with His love poured out through our church family. I don't think that we will ever fully understand the extent of God's love for us in our time here on earth, no matter how many hours you spend in prayer, studying His Word, doing Bible studies, listening to sermons, or engaging in intellectual religious conversations. But that doesn't mean that we don't increasingly understand it to a certain extent while we ARE here. This next point may be up for some debate, but just go with it for now. There are 4 ways through which God speaks to us: His word, prayer, other people, and circumstances. God has made Himself quite known to us in all of these ways since Emma's diagnosis in October, and He continues to do so in all of these ways. I must say, though, that He's a doing a bang-up job of communicating with us through our brothers and sisters in Christ. Just when I think I couldn't be more overwhelmed by the support and prayers of our friends and family, He throws something else at us to prove me wrong...and our church family is the perfect example of that. The 4th of July celebration was an unforgettable celebration of freedom and God's love. Let me assure you, no one felt it more than us. The money that was raised for our family will help us tremendously...Emma's turning out to be quite an expensive baby. Which leads me to my next big announcement...
I got a phone call last Thursday afternoon to inform me that Emma's Chiari decompression surgery has been scheduled for Tuesday, July 20 at 8 am. This was both expected and unexpected. The surgery itself was expected. The day and time already being set was unexpected. A few weeks ago, Dr. Troup ordered a swallow study, and he said we'd follow up afterwards. We were all on the same page that the next step would be Emma's Chiari decompression at some point. The swallow study was two weeks ago, so I called last week to follow up, just like he said. It turns out that Dr. Troup and his nurse are out of town until Tuesday (tomorrow) - good for them! I can't imagine that a brain surgeon gets much of a break. So then last Thursday, I get a phone call from a surgery scheduler saying that before he went out of town, he ordered the surgery scheduled...didn't see THAT coming! So here we are, waiting for a surgery in two weeks, and I have absolutely no clue what this surgery will involve. I can Google the surgery just as well as the next guy, but that still doesn't really tell me about MY daughter's surgery. Every one of these surgeries is different for each person because each person's malformation is unique. In fact, Dr. Troup told us that Emma's is the most unique he's ever seen - unlike anything he's seen at a seminar, in a textbook, etc. So I have no idea how long the surgery will take, how long she'll be in the hospital, how long before we'll see results (if we see them at all), if she can lie on her back...so I kindly and respectfully ask for you to please not ask me any questions about it quite yet. When I say I don't know, I mean I don't know. You and I aren't dating, doing that "yes means no and no means yes" stuff. I really don't know anything. Sorry to be so testy, but this surgery scares me enough without a lot of questions because it's less routine, less common, more dangerous, and more likely to not improve anything with Emma's swallowing function, unfortunately. But it's still something that has to be done for other reasons down the road.
Emma is spending the night with my parents tonight...pray for them, even though most of you will read this blog after they've endured the night with Emma. Pray for their sanity and for good quality napping tomorrow. They were so excited and so precious about it. I of course had to send Emma off with plenty of changes of clothes and a diaper bag full of travel paraphernalia...if you know my mom at all, you know there's no telling what kinds of plans she has for Emma. But it all depends on how Emma feels and on how my mom's back feels. She pulled her back the other day, and lifting a 14-pound baby isn't easy :( Poor Nan. Pray for her back, too.
Lola, our 14-pound Shih-Tzu/Pekingnese mix, moved back in this weekend. We thought she was adjusting relatively well to Emma. She's jealous, obviously, and maybe a little depressed that she's not the center of attention anymore, but she's ok. Lola is getting used to Emma's noises, and we just generally keep an eye on her. We know Lola's "I-don't-know-who-you-are-and-I'll-snap-at-you-over-sudden-movements" look, so we're keeping a watch out for that until she knows and (maybe) loves Emma. Like I said, we THOUGHT Lola was adjusting. See, Lola gets mad when we leave her sometimes, and she pushes her food bowl around the kitchen to scatter a little bit of food on the floor. Then when we get home, she feels guilty and eats it all off the floor. The only time she destroys the kitchen floor with food is when there has been a thunderstorm or fireworks. Oh, and she can't move the water bowl easily because it's a really heavy ceramic bowl...for a reason. So we came home on the 4th after fireworks had probably gone off all over the place, and food was everywhere. Reasonable. And we felt kinda sad for our scared puppy. This afternoon we took Emma on an errand outing, and this is what we came home to:
Scared puppy?? Oh no. Bad puppy. Spiteful puppy. I don't know if you can tell from that bottom picture, but Houdini managed to scoot her water bowl and slosh water 4 feet from the bowl's starting point. And these are only shots of PART of our kitchen. I'll be interested to see how long this goes on.
One of the errands we ran with Emma today was to Bed, Bath, and Beyond. You all know how narrow those aisles are. One day, I think I'll have probably had it up to here (envision vigorous hand gesture) and purposefully ram a shopping cart or Emma's stroller (less violent ramming with her in it, of course) into a display of less fragile/less expensive things...the clearance table perhaps...just to make a point. So there we are, sucking in just to get down the aisles to pick out new sheets. I say new, but they're the exact same sheets we've had since we got married, and we just keep getting new ones because we have an addiction to Beech sateen sheets. Ahhhh. They have this new color of green that's beautiful, so we decided to go with those. I believe our (maybe my??) exact words were, "Sure, they'll match the green in our room, there's a lot of color in our duvet cover to tie it together." Famous last words. Horrible idea. Worst decision we've made in a while. I'm sure any interior designer will tell you that shades of green don't "kind of" match - it's either dead on, or it's a disaster, and you BETTER bring a swatch with you. Poor Russell got home and put those bad boys on the bed, only to realize the mistake we made and call me in. It looked like someone had guacamoleed our bed. And our bedroom colors are red, soft gold, tan, and mossy green. Too bad I forgot to take a picture of it before I meticulously refolded the sheets back into that tiny little bag they come in. It's like folding a map, only worse, because I'm trying to make shiny, slippery, sateen sheets look unused (which they are), yet an amateur folder obviously has stuffed them back into a bag.
Ok, I'll cut it off now and leave you with the latest in Emma's development. Baby steps here (literally), but still steps nonetheless. We think Emma's going to be a lefty. She put her left fist in her mouth before her right and still prefers it, and she started reaching for our faces today (with her left hand) when we were talking to her. Actually tonight, I think she was trying to rip the lips right off my face. Emma, you've got a pair of your own - leave mine alone. So here she is reaching for Daddy's face.
Subscribe to:
Posts (Atom)