Showing posts with label Grace. Show all posts
Showing posts with label Grace. Show all posts
Wednesday, November 23, 2011
Thankful
This week, I wanted to take a moment to talk about what I am thankful for. This Thanksgiving is a big contrast to last Thanksgiving, and for that, I am very thankful! I am also thankful for my family...of course my immediate family...Chad and I have been together for 10 years! We have had our ups and downs (thankfully more ups than downs), and we continue to grow together. Grace is now close to 9 months old, and has changed our lives for the better! We are SO incredibly thankful for her and her sweet, miraculous life. She has taught us and so many others about God's power and grace. I am also thankful for our extended families...Chad's and my parents and siblings, our niece (and niece/nephew on the way!), grandparents, aunts, uncles, and cousins. They made us who we are. I am thankful for my precious friends...I won't attempt to list specific names for fear of my crazy mind forgetting someone, but you know who you are! :) You have loved me through the hard times and I will never forget that! I am thankful for my church family, who are literally my extended family. I am thankful for my job. I LOVE being a pediatric nurse, and I love it even more since I work part time! :) And last but certainly not least, I am thankful for Jesus...my Redeemer, my Savior, the Lover of my soul, my Father. It is because of Him that I live and breathe.
Saturday, November 19, 2011
Pretty as a Picture
Grace is going to be in our children's hospital 2012 calendar! So today we played with her tutu and my camera. What do you think??
Wednesday, November 16, 2011
Vision
Grace had her second vision appointment today at our state's School for the Blind Low Vision Clinic. Everyone there was VERY friendly, and the doctor (Dr. S) was very helpful and informative. Grace was very cooperative (an answered prayer!). Dr. S said she has pale optic nerves, which is causing her low vision. He stated that she is not blind (we didn't think she was totally blind). Unfortunately, there is no specific treatment like I had hoped; however, he did refer us for the Comprehensive Home-based Intervention Program (CHIP). This program will serve Grace in our home to prepare her to enter the most appropriate learning environment by the time she is school age---a certified teacher will come to our house and work with Grace, as well as teach us how to work with Grace to reinforce her learning activities! Dr. S said that he has seen children with this improve. He also said that Grace has an astigmatism, and she may need glasses in the future to help with that. He predicted that Grace could possibly function normally, at least until the third grade (because print usually gets smaller then). He also doesn't think she will need any assistive devices (like a cane). Basically, right now it is too early to tell what Grace's potential will be, but we are going to do EVERYTHING we can to help her reach her highest potential! After all of this, I should be a pretty good therapist! :)
Can I just tell you that Grace's vision impairment has been a BIG source of anxiety for me. I have always known that her vision was impaired. When she was an infant, I was so afraid that she couldn't see me and wouldn't know my face. I am so thankful for continued confirmation of Grace's visual ability. I know she will overcome this obstacle in her life, just like she has done in the past!
And for your viewing pleasure...the princess!
Can I just tell you that Grace's vision impairment has been a BIG source of anxiety for me. I have always known that her vision was impaired. When she was an infant, I was so afraid that she couldn't see me and wouldn't know my face. I am so thankful for continued confirmation of Grace's visual ability. I know she will overcome this obstacle in her life, just like she has done in the past!
And for your viewing pleasure...the princess!
Wednesday, November 9, 2011
8 Months
Happy 8 months baby girl! What's up with Grace these days? Well, she is in size 12-18 month clothes, and she is wearing size 4 diapers. She is finally liking fruit! She still loves her vegetables, and will sometimes eat 1.5 things of vegetables. She is eating about three 6-ounce bottles, with sometimes one to two 2-4-ounce bottles after her food.
We changed therapy groups, so now she is receiving both physical and occupational therapy! Changing groups was the right thing to do for Grace. We are very thankful for our therapists, and Grace is making great progress with her development! Before OT, she really didn't use her hands much, but now she is using them so much more! She can sometimes hold in her paci, and recently for the first time ever she put her paci back in on her own! That was a big milestone!! She is also rolling all the time! She can roll from her back to her tummy. She is also really trying to sit on her own! She is not quite there yet, but she is making lots of progress. She is also focusing and following better than ever!
We also had a small vacation...we took Grace to the beach. She did NOT like the beach...it was way too sunny and windy for her, but maybe next year she will like it! Grace also celebrated Halloween by being the most beautiful ladybug I've ever seen! I wish I had gotten a picture at our church's Paloween celebration when Grace got to see her Mamaw Rita, her Aunt Susan, and her Aunt Robin! :) They love Grace so very much, and we are so thankful for them (Mamaw Rita keeps Grace when I work).
Thank you all for your love and prayers for our baby girl! Please join us in prayer for her! Here are specific prayer requests for Miss Grace: the she would continue to make progress with her developmental milestones, that her vision would continue to improve (we have another vision appointment next week), that her shunt would continue to work correctly and remain infection free (we are almost past the 6 month period where she is most at risk for infection), and that she would continue to bring others closer to Christ. We are so proud of our biggest blessing!
We changed therapy groups, so now she is receiving both physical and occupational therapy! Changing groups was the right thing to do for Grace. We are very thankful for our therapists, and Grace is making great progress with her development! Before OT, she really didn't use her hands much, but now she is using them so much more! She can sometimes hold in her paci, and recently for the first time ever she put her paci back in on her own! That was a big milestone!! She is also rolling all the time! She can roll from her back to her tummy. She is also really trying to sit on her own! She is not quite there yet, but she is making lots of progress. She is also focusing and following better than ever!
We also had a small vacation...we took Grace to the beach. She did NOT like the beach...it was way too sunny and windy for her, but maybe next year she will like it! Grace also celebrated Halloween by being the most beautiful ladybug I've ever seen! I wish I had gotten a picture at our church's Paloween celebration when Grace got to see her Mamaw Rita, her Aunt Susan, and her Aunt Robin! :) They love Grace so very much, and we are so thankful for them (Mamaw Rita keeps Grace when I work).
Thank you all for your love and prayers for our baby girl! Please join us in prayer for her! Here are specific prayer requests for Miss Grace: the she would continue to make progress with her developmental milestones, that her vision would continue to improve (we have another vision appointment next week), that her shunt would continue to work correctly and remain infection free (we are almost past the 6 month period where she is most at risk for infection), and that she would continue to bring others closer to Christ. We are so proud of our biggest blessing!
Friday, October 21, 2011
One Year
One year ago today, our world stopped when we learned something was wrong with our baby girl. I remember the day so perfectly. I remember I wore a pink top and Chad wore a blue striped shirt. We were SO excited to find out if our precious baby was a boy or a girl. We had our gender/anatomy ultrasound before we met with Dr. M. I really thought it was a boy, so I was very surprised to learn that it was a GIRL! We waited in the waiting room after the ultrasound and showed off pictures of our sweet girl to the others waiting. Everyone was so excited and sweet to us, as we were glowing with excitement. We could NOT stop smiling!
I remember Dr. M's face when she walked into the exam room. I didn't immediately think something was wrong (I think I was in denial). But she quickly told us that our perfect baby was not healthy. I remember immediately crying and covering my mouth in disbelief. I remember crying so hard I had to lay down so I would not faint. I remember Chad and Dr. M holding my hands. Dr. M prayed with us, and recited Jeremiah 29:11.
I remember crying in the waiting room uncontrollably as I waited to have more labs taken, while other moms were so excited and happy with their babies safe in their pregnant bellies. I remember thinking why hasn't the world around me stopped, because my world certainly had.
I remember being in total shock as we walked to my car. We sat there and cried as we called our families with the news. Lunch even seemed like an impossible task. It was so hard to believe that everyone else was going on with their "perfect" lives, while ours had just fallen apart. The cars went by so fast. Everyone was in a hurry. I was frozen in panic.
We made it home somehow and just sat there. We didn't know what else to do. I know I've never cried so much. We initially were going to have to wait until the next week for our level 2 ultrasound with a specialist, but thankfully (and I know because God was at work), we were able to get an appointment the next day.
It seemed like the seconds were going by in slow motion. We decided to pull the guest bed mattress off the bed and put it in the living room floor, so we could sleep with the TV on as a distraction (we didn't have a TV in our room). I remember we watched Bizarre Foods all night. I prayed off and on all night as we waited.
The morning finally came, and we found ourselves at Dr. P's office. After a lot of questions and a very detailed ultrasound, we were given the worst possible news: our little girl had an encephalocele. It contained part of her brain. Although they did not think based on the ultrasound that the condition was genetically-related at all, Dr. P recommended an amniocentesis and some more labs. We were told our precious baby would either be stillborn or live with severe disabilities. We were given the option to abort. However, there was no hesitation to choose life for our precious little one.
Fast forward through 19 weeks of grief, preparation, celebration, tears, and hope, and on March 4, 2011, I held my precious baby girl Grace in my arms. It was instant and the most intense love I have ever known. I can't even put the feeling into words. I'm sure all you mommas know what I'm talking about. The second I saw her, I loved her more deeply than anything I ever had before. It brings tears to my eyes to think about that moment. I will NEVER forget it.
Fast forward some more, and now we have a 7 month old. A 7 MONTH OLD!!! Where has the time gone?? I'm not sure, but I have LOVED every moment of being Grace's momma. I am SO thankful...beyond words...that I get to be her momma and that she gets to be my baby. She has taught me so much about love, life, faith, surrender, joy, possibilities, hope, and perspective. My life has been changed because of her. And she doesn't even know it. :)
So why do I keep reliving this day? Because this day and the days and months after it CHANGED MY LIFE. I have never been closer to my Father. He carried me through the darkest days of my life. He reminded me that He was in control and that He would never leave me. He gave me strength and showed me so much love and grace. My faith grew, deepened, and strengthened in amazing ways.
I wish no one ever had to go through this. This was definitely the hardest thing I have ever had to live through. I know there are other things that people go through that are much worse than this. But if you put it into perspective, whatever anyone has to go through is the hardest thing they have ever had to live through. It's all relative. You can't compare. So I'm here today to testify that God will carry you through it.
When you pass through the waters, I will be with you. And the waves will not overcome you. Do not fear, for I have redeemed you. I have called you by name, you are Mine. I am the Lord.
Here is a ultrasound picture of Grace from that day:
And here is Grace one year later:
I remember Dr. M's face when she walked into the exam room. I didn't immediately think something was wrong (I think I was in denial). But she quickly told us that our perfect baby was not healthy. I remember immediately crying and covering my mouth in disbelief. I remember crying so hard I had to lay down so I would not faint. I remember Chad and Dr. M holding my hands. Dr. M prayed with us, and recited Jeremiah 29:11.
I remember crying in the waiting room uncontrollably as I waited to have more labs taken, while other moms were so excited and happy with their babies safe in their pregnant bellies. I remember thinking why hasn't the world around me stopped, because my world certainly had.
I remember being in total shock as we walked to my car. We sat there and cried as we called our families with the news. Lunch even seemed like an impossible task. It was so hard to believe that everyone else was going on with their "perfect" lives, while ours had just fallen apart. The cars went by so fast. Everyone was in a hurry. I was frozen in panic.
We made it home somehow and just sat there. We didn't know what else to do. I know I've never cried so much. We initially were going to have to wait until the next week for our level 2 ultrasound with a specialist, but thankfully (and I know because God was at work), we were able to get an appointment the next day.
It seemed like the seconds were going by in slow motion. We decided to pull the guest bed mattress off the bed and put it in the living room floor, so we could sleep with the TV on as a distraction (we didn't have a TV in our room). I remember we watched Bizarre Foods all night. I prayed off and on all night as we waited.
The morning finally came, and we found ourselves at Dr. P's office. After a lot of questions and a very detailed ultrasound, we were given the worst possible news: our little girl had an encephalocele. It contained part of her brain. Although they did not think based on the ultrasound that the condition was genetically-related at all, Dr. P recommended an amniocentesis and some more labs. We were told our precious baby would either be stillborn or live with severe disabilities. We were given the option to abort. However, there was no hesitation to choose life for our precious little one.
Fast forward through 19 weeks of grief, preparation, celebration, tears, and hope, and on March 4, 2011, I held my precious baby girl Grace in my arms. It was instant and the most intense love I have ever known. I can't even put the feeling into words. I'm sure all you mommas know what I'm talking about. The second I saw her, I loved her more deeply than anything I ever had before. It brings tears to my eyes to think about that moment. I will NEVER forget it.
Fast forward some more, and now we have a 7 month old. A 7 MONTH OLD!!! Where has the time gone?? I'm not sure, but I have LOVED every moment of being Grace's momma. I am SO thankful...beyond words...that I get to be her momma and that she gets to be my baby. She has taught me so much about love, life, faith, surrender, joy, possibilities, hope, and perspective. My life has been changed because of her. And she doesn't even know it. :)
So why do I keep reliving this day? Because this day and the days and months after it CHANGED MY LIFE. I have never been closer to my Father. He carried me through the darkest days of my life. He reminded me that He was in control and that He would never leave me. He gave me strength and showed me so much love and grace. My faith grew, deepened, and strengthened in amazing ways.
I wish no one ever had to go through this. This was definitely the hardest thing I have ever had to live through. I know there are other things that people go through that are much worse than this. But if you put it into perspective, whatever anyone has to go through is the hardest thing they have ever had to live through. It's all relative. You can't compare. So I'm here today to testify that God will carry you through it.
When you pass through the waters, I will be with you. And the waves will not overcome you. Do not fear, for I have redeemed you. I have called you by name, you are Mine. I am the Lord.
Here is a ultrasound picture of Grace from that day:
And here is Grace one year later:
Wednesday, October 5, 2011
7 Months
The baby girl is 7 months old. Times flies, and we are certainly having fun! There is not a whole lot of new things going on in our house, except for lots of eating and growing, as well as continued progress with meeting developmental milestones. We are now in size 4 diapers, and some 9, but mostly 12 month clothes. The newest things are that she is trying to roll from her tummy to her back, and she is also trying to sit up! She loves all things vegetable. And, as you can see by the videos (see the one below), she is really finding her laughing voice!
We simply couldn't love her more!
We simply couldn't love her more!
Walker and Grace on a date. I hope this isn't predictive.
Loving on her momma.
And I just thought these were so funny.
Happy 7 months, my baby girl!
Thursday, September 29, 2011
Friday, September 16, 2011
Half Year
Oh my goodness...my baby girl is 6 months old!!! 6 months...that's just crazy!
Here are her stats from our appointment with Dr. M, her pediatrician:
-length: 25.5 in (50%tile)
-weight: 18 lb, 2 oz (>75%tile)
-head circumference: 39.25 cm (<5%tile)
No, you can't put Grace on your table at Thanksgiving. :) And although her HC is <5%tile, it is still growing, just on it's own curve right under the "normal" curve (around the 2%tile).
Some exciting new developments...Grace is rolling! She can roll from her back to her sides and then to her tummy! She is also "talking" more and more. She sucks her thumb (left hand) often. She is continuing to make slow improvements with therapy. Also, most recently she has been consistently looking at me and smiling. You do not know how much that blesses my heart! Before now, she has mostly just smiled at hearing my voice. So it seems her vision is improving!! Thank you, God!
She is in size 3 diapers, although I recently bought size 4s because I think we will be moving up soon. She is wearing mostly size 9-12 month clothes. She is eating about 3-4 bottles a day and 2 "meals" of stage 2 baby food. She likes apples, pears, prunes, carrots, squash, and sweet potatoes. It seems she likes vegetables better than fruits (squash is by far her favorite). She must take after her daddy in that area.
We saw Dr. B and our palliative team yesterday just for follow up. I love our palliative team! They give us so much support and I really like that they look at Grace with a different set of eyes. There was really nothing new regarding the appointment, but we did get referrals for another vision evaluation (with possibly vision therapy in the future), and for another therapy group.
We also saw Dr. P (Grace's neurosurgeon) today for follow up from her shunt surgery. She had a CT first and the appointment second. Dr. P said her CT scan looked "perfect" and that she is doing great!!! We will follow up again in 6 months, when Grace will be almost 1!
Finally, I love this song! I just listened to it for the first time today. Grace, you were meant to be!
So how can you continue to pray for our sweet girl? Pray that her shunt would continue to remain infection free and that it will continue working. Pray that she would continue to make progress with her therapy. Pray that she would continue to meet her developmental milestones. Pray that her vision continues to improve.
Thank you for loving our sweet girl and for joining with us in prayer for her!
Here are her stats from our appointment with Dr. M, her pediatrician:
-length: 25.5 in (50%tile)
-weight: 18 lb, 2 oz (>75%tile)
-head circumference: 39.25 cm (<5%tile)
No, you can't put Grace on your table at Thanksgiving. :) And although her HC is <5%tile, it is still growing, just on it's own curve right under the "normal" curve (around the 2%tile).
Some exciting new developments...Grace is rolling! She can roll from her back to her sides and then to her tummy! She is also "talking" more and more. She sucks her thumb (left hand) often. She is continuing to make slow improvements with therapy. Also, most recently she has been consistently looking at me and smiling. You do not know how much that blesses my heart! Before now, she has mostly just smiled at hearing my voice. So it seems her vision is improving!! Thank you, God!
She is in size 3 diapers, although I recently bought size 4s because I think we will be moving up soon. She is wearing mostly size 9-12 month clothes. She is eating about 3-4 bottles a day and 2 "meals" of stage 2 baby food. She likes apples, pears, prunes, carrots, squash, and sweet potatoes. It seems she likes vegetables better than fruits (squash is by far her favorite). She must take after her daddy in that area.
We saw Dr. B and our palliative team yesterday just for follow up. I love our palliative team! They give us so much support and I really like that they look at Grace with a different set of eyes. There was really nothing new regarding the appointment, but we did get referrals for another vision evaluation (with possibly vision therapy in the future), and for another therapy group.
We also saw Dr. P (Grace's neurosurgeon) today for follow up from her shunt surgery. She had a CT first and the appointment second. Dr. P said her CT scan looked "perfect" and that she is doing great!!! We will follow up again in 6 months, when Grace will be almost 1!
Finally, I love this song! I just listened to it for the first time today. Grace, you were meant to be!
So how can you continue to pray for our sweet girl? Pray that her shunt would continue to remain infection free and that it will continue working. Pray that she would continue to make progress with her therapy. Pray that she would continue to meet her developmental milestones. Pray that her vision continues to improve.
Thank you for loving our sweet girl and for joining with us in prayer for her!
Monday, August 29, 2011
Pool Princess
So we took Grace to the pool Saturday. She did NOT like it...maybe next year :) But we did get some really cute pictures of a really cute baby girl! Enjoy!
Dedication
"I prayed for this child, and the Lord has granted me what I asked of Him. So now I give him [her] to the Lord. For his whole life he will be given over to the Lord." 1 Samuel 1
Last Sunday, we publicly dedicated our precious Grace to God at our church. It was more of a formality than anything, because long before we ever even saw Grace's face, we dedicated her life to Him.
Sunday, we publicly committed to praying for Grace and raising her according to His will and ways. I realize that the dedication of her life is not a one time thing. In the scripture above, Hannah said, in regards to her son Samuel, that she will give him over to the Lord "for his whole life".
I have always prayed that God will use Grace's life to draw others nearer to Him. I know that He already has, and I pray that He will continue to do so.
Last Sunday, we publicly dedicated our precious Grace to God at our church. It was more of a formality than anything, because long before we ever even saw Grace's face, we dedicated her life to Him.
Sunday, we publicly committed to praying for Grace and raising her according to His will and ways. I realize that the dedication of her life is not a one time thing. In the scripture above, Hannah said, in regards to her son Samuel, that she will give him over to the Lord "for his whole life".
All of our family and friends that celebrated the day with us
I have always prayed that God will use Grace's life to draw others nearer to Him. I know that He already has, and I pray that He will continue to do so.
Thursday, August 18, 2011
Sunday, August 7, 2011
Wow Five Months
Baby girl is FIVE MONTHS OLD! I can't believe it! She is doing really, really well! She is "talking" and laughing and smiling. My heart is full! She also discovered she likes blowing bubbles, and she is experimenting with the volume of her voice. It is so funny! She is the best baby! She still loves her swing! She also discovered recently that she loves playing with my hair when I hold her. It is sooo sweet and melts my heart! We pretty much go anywhere and everywhere, and she is really good unless she is hungry or sleepy. The only thing she really doesn't like is lotion after her bath. Well, that and therapy on some days. :)
She is a growing girl! I posted her four month stats in a previous post, but she is 50-75%tile in weight and 50%tile in length. Of course, her head circumference is <5%tile, but she has microcephaly, so that wasn't surprising. We go back in about a month for 6 month immunizations.
Grace is wearing size 3 diapers most of the time. She is in size 6-9 month clothes. Her eating schedule is being disrupted because we are introducing solid food! So, as far as formula goes, she is eating anywhere from 4 to 7 ounces every 4-ish hours during the day. We were adding rice cereal to her morning and night bottles, but she is now eating one serving of cereal via spoon! She likes oatmeal better than rice, and I recently added a little apple baby food in with her cereal. She is a good eater! She is also a great sleeper! She goes to bed usually around 10 pm and doesn't wake up until we wake her up 99% of the time. We usually wake her up around 6:30-7 am.
All of her doctors are really pleased with how well she is doing! The most recent big news we have gotten was from her opthamology appointment. Dr. M said she can see! I thought she could see, but I needed an opthamologist to confirm it! I knew she had some vision problems, because she can't always focus, and she rarely follows anything. Dr. M said that she does have vision delays, and she probably either has delayed visual maturation or cortical visual impairment. There is no treatment. The delays may or may not correct on their own, but we will just have to wait and see. Dr. M said he was optimistic. I guess we are getting good at that (maybe?). ha! We know God will continue to carry us through the wait and see, just as He has done for the past 10 months.
Grace is doing really well with her therapy. I guess we are finished with speech therapy. We are continuing physical therapy every 2 weeks. Grace continues to amaze us with her improvements in her motor skills and in her tone.
We will have another round of doctor's appointments in September, including 6 month immunizations, follow up with her neurosurgeon, and follow up with her palliative care doctor.
So how can you pray for our sweet girl?? Well, pray that she continues to improve with therapy, that her vision continues to improve, that her shunt remains infection-free, that a replacement PT will be found while hers is on maternity leave, and that our next round of doctor's appointments goes well. Thank you so much for loving and praying for her! We are blessed!
Below is her 5 month picture. Notice the blurry arms and legs?? That's because she was excited and moving them! She is my heart!
She is a growing girl! I posted her four month stats in a previous post, but she is 50-75%tile in weight and 50%tile in length. Of course, her head circumference is <5%tile, but she has microcephaly, so that wasn't surprising. We go back in about a month for 6 month immunizations.
Grace is wearing size 3 diapers most of the time. She is in size 6-9 month clothes. Her eating schedule is being disrupted because we are introducing solid food! So, as far as formula goes, she is eating anywhere from 4 to 7 ounces every 4-ish hours during the day. We were adding rice cereal to her morning and night bottles, but she is now eating one serving of cereal via spoon! She likes oatmeal better than rice, and I recently added a little apple baby food in with her cereal. She is a good eater! She is also a great sleeper! She goes to bed usually around 10 pm and doesn't wake up until we wake her up 99% of the time. We usually wake her up around 6:30-7 am.
All of her doctors are really pleased with how well she is doing! The most recent big news we have gotten was from her opthamology appointment. Dr. M said she can see! I thought she could see, but I needed an opthamologist to confirm it! I knew she had some vision problems, because she can't always focus, and she rarely follows anything. Dr. M said that she does have vision delays, and she probably either has delayed visual maturation or cortical visual impairment. There is no treatment. The delays may or may not correct on their own, but we will just have to wait and see. Dr. M said he was optimistic. I guess we are getting good at that (maybe?). ha! We know God will continue to carry us through the wait and see, just as He has done for the past 10 months.
Grace is doing really well with her therapy. I guess we are finished with speech therapy. We are continuing physical therapy every 2 weeks. Grace continues to amaze us with her improvements in her motor skills and in her tone.
We will have another round of doctor's appointments in September, including 6 month immunizations, follow up with her neurosurgeon, and follow up with her palliative care doctor.
So how can you pray for our sweet girl?? Well, pray that she continues to improve with therapy, that her vision continues to improve, that her shunt remains infection-free, that a replacement PT will be found while hers is on maternity leave, and that our next round of doctor's appointments goes well. Thank you so much for loving and praying for her! We are blessed!
Below is her 5 month picture. Notice the blurry arms and legs?? That's because she was excited and moving them! She is my heart!
Wednesday, August 3, 2011
Photos
First picture
One day after surgery, first bow
Going home
Morning after shunt surgery
Daddy time
Eating oatmeal and apples
Pretty in purple
Thursday, July 28, 2011
Trying rice cereal
We are on day 2 of TRYING rice cereal (per spoon...she already LOVES it in her bottle)...I say "trying" because I'm not really sure how well it's going! ha What I am sure about is that I have a little baby growing into a big girl! She'll be five months old very soon. I wish I could just say STOP and pause these moments...it's all happening too fast! I am LOVING every second of being momma to this precious girl! I thank God for blessing my life with her!
Thursday, July 14, 2011
Grace Talking!
We had Grace's four month pediatrician visit today. She got three vaccines (two shots), and she did great! Stats: Weight 15.1 lb (50-75%tile), length 24.something in (50%tile), and head circumference 38 cm (<5%tile). I am so proud of my growing girl!
I finally got a video of her talking saved, so here it is!
I finally got a video of her talking saved, so here it is!
Wednesday, July 6, 2011
Four Months!
Wow-Grace is four months old now! Time is flying by as we try and enjoy every second of her life! She turned four months on July 4th, hence our picture!
What has Grace been up to these days? Well, she is wearing mostly 6 and 9 month clothes, and size 2 diapers. We started rice cereal Saturday, so we are adjusting to a new eating schedule. Generally, she eats anywhere from 4-8 ounces every 4 hours from 6 am to 10 pm. She sleeps really well at night still! She is talking so much these days, which we LOVE! She still enjoys swinging, playing in her bouncer, and playing on her back. She is making so much progress with speech and physical therapy...we are so proud! Tummy time is getting better and better. She is very attentive when we read to her, and she also likes music and her mobile. Her hair is getting longer and longer, so much so you can't really see her scars much anymore. She is laughing more and more, and she loves feeling of my face and playing with my hair. We see our pediatrician for her 4 month check up next week, so I will post her stats after that. We do have to finish her hearing test, and we are being referred for a vision test. Please pray that these tests will go well! Also, please continue to pray for her progress with her therapy, and pray that her shunt will remain infection free.
We are in love with our little girl and are so thankful for the past four months!
Here are some more pics! I will post a video of her talking as soon as I get it on my computer.
"Every good and perfect gift is from above..." James 1:17
What has Grace been up to these days? Well, she is wearing mostly 6 and 9 month clothes, and size 2 diapers. We started rice cereal Saturday, so we are adjusting to a new eating schedule. Generally, she eats anywhere from 4-8 ounces every 4 hours from 6 am to 10 pm. She sleeps really well at night still! She is talking so much these days, which we LOVE! She still enjoys swinging, playing in her bouncer, and playing on her back. She is making so much progress with speech and physical therapy...we are so proud! Tummy time is getting better and better. She is very attentive when we read to her, and she also likes music and her mobile. Her hair is getting longer and longer, so much so you can't really see her scars much anymore. She is laughing more and more, and she loves feeling of my face and playing with my hair. We see our pediatrician for her 4 month check up next week, so I will post her stats after that. We do have to finish her hearing test, and we are being referred for a vision test. Please pray that these tests will go well! Also, please continue to pray for her progress with her therapy, and pray that her shunt will remain infection free.
We are in love with our little girl and are so thankful for the past four months!
Here are some more pics! I will post a video of her talking as soon as I get it on my computer.
"Every good and perfect gift is from above..." James 1:17
Thursday, June 23, 2011
Therapy Update
Hello! First I want to post a comment to my friend, Anna---happy due date day! I hope Walker decides to come soon so he can meet his future wife! :) I can't wait to meet and hold him very soon!
Ok, I just wanted to write a new post to update you on Grace's progress with speech and physical therapy. We have been seeing the speech therapist for a while now, and she taught me how to feed Grace and do some exercises with her mouth. We went back today just to follow up and she said Grace is doing great! Although she is not 100% where she should be, she's close! The ST will continue to see Grace as we start rice cereal soon, just to make sure we don't have any problems. We will see her again in three weeks. As far as physical therapy goes, we officially started last week. The PT taught me how to do different exercises with Grace to help with her hypertonia. Basically, Grace likes to stay flexed, so we have been working on extension. The PT was pleased that Grace has made progress in only a week! We will see her again in two weeks.
I am one proud momma! We have been working so hard with all our exercises, and we are making lots of progress!
And of course, here are some cute pics of my cute girl!
Ok, I just wanted to write a new post to update you on Grace's progress with speech and physical therapy. We have been seeing the speech therapist for a while now, and she taught me how to feed Grace and do some exercises with her mouth. We went back today just to follow up and she said Grace is doing great! Although she is not 100% where she should be, she's close! The ST will continue to see Grace as we start rice cereal soon, just to make sure we don't have any problems. We will see her again in three weeks. As far as physical therapy goes, we officially started last week. The PT taught me how to do different exercises with Grace to help with her hypertonia. Basically, Grace likes to stay flexed, so we have been working on extension. The PT was pleased that Grace has made progress in only a week! We will see her again in two weeks.
I am one proud momma! We have been working so hard with all our exercises, and we are making lots of progress!
And of course, here are some cute pics of my cute girl!
Friday, June 17, 2011
Beautiful Heart
This is a picture from our first ultrasound with Grace! I love it! You can clearly see her heart, and I remember being able to see it beating at that appointment when I was seven weeks pregnant. That was one of the best moments of my life.
One of the things many of the doctors commented about, even after the diagnoses of the birth defects, was her "beautiful four chamber heart". I always loved when they said that, because I knew she would have a beautiful heart, both literally and figuratively.
My baby girl is beautiful, heart and all! :)
"You hem me in - behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain." Psalm 139: 5-6
Monday, June 13, 2011
Our Gift
I'm linking up with Kelly's Korner blog for her "Show Us Your Life" post on special needs families. Mostly, I just hope to help families with babies with the same/similar diagnoses as Grace. I know personally when I was pregnant with Grace and we first found out her diagnoses, I was absolutely desperate to find other families of babies with the same diagnoses. So here's the story of our precious gift, Grace Elizabeth.
We had been married for six years when we found out we were pregnant with our first baby in July 2010. I had the perfect pregnancy, and I LOVED every minute of it! Everything was going great with no complications. Until October 21. We went for the "big" ultrasound to find out gender and that our baby was perfectly healthy. I will never forget that day. We had our ultrasound and, to my surprise, we found out we were having a girl! I was so excited!! Chad had really wanted a boy, but was also excited about the baby. Nothing else about the ultrasound was remarkable to me. I do remember the person doing the ultrasound never said she was healthy, but I really didn't think much of it. To be perfectly honest, I never even had a second thought about the health of our baby. We waited to see our OB, and shared our pictures and news with the others in the waiting area. Everyone was so excited for us as well. They finally called us to our room, and Dr. M walked in shortly, and our hearts literally broke as she immediately said there was something wrong with our precious baby girl. I started crying uncontrollably and had to lay down so I wouldn't faint. Dr. M said she wasn't exactly sure what was wrong, but that our baby probably had either a cystic hygroma, Turner syndrome, or (the worst) an encephalocele. Dr. M prayed for us and shared in our grief. She referred us to a maternal-fetal specialist, who confirmed our worst fears with the diagnosis of an occipital encephalocele the next day. The prognosis was poor. We were told that she would probably not live long, and that if she did, she probably would not have any quality of life. The exact words of one of the surgeons was that "she probably won't ever know the world around her".
The next 20 weeks of the pregnancy were filled with grief, love, prayer, and celebration for our precious daughter. We had many doctor's appointments, and Grace was also diagnosed later with microcephaly and agenesis of the corpus callosum. After much prayer, we decided to have a C-section and to make Grace a DNR. Grace was born March 4, 2011, and to our doctors' surprise, she was alive and well! You can find her birth story here. She was a fighter from the first second of her life! Our love for her was instant and more than I could have ever imagined. She had surgery to remove the (large) encephalocele and about 10% of her cerebellum when she was 5 days old. She came home when she was almost 2 weeks old. She developed hydrocephalus, and had a VP shunt placed when she was 2.5 months old.
She is now a little more than 3 months old, and she is doing really well! She has some developmental delays, but we hope to start physical and occupational therapy soon. Grace's neurosurgeon is surprised and very pleased with how well she is doing! He says that we will not know the full story on her delays until she is a little older. He predicts that she will mostly have problems with her motor skills.
I feel chosen and blessed to be Grace's momma. I thank God everyday for her life and the miracles He has done.
We had been married for six years when we found out we were pregnant with our first baby in July 2010. I had the perfect pregnancy, and I LOVED every minute of it! Everything was going great with no complications. Until October 21. We went for the "big" ultrasound to find out gender and that our baby was perfectly healthy. I will never forget that day. We had our ultrasound and, to my surprise, we found out we were having a girl! I was so excited!! Chad had really wanted a boy, but was also excited about the baby. Nothing else about the ultrasound was remarkable to me. I do remember the person doing the ultrasound never said she was healthy, but I really didn't think much of it. To be perfectly honest, I never even had a second thought about the health of our baby. We waited to see our OB, and shared our pictures and news with the others in the waiting area. Everyone was so excited for us as well. They finally called us to our room, and Dr. M walked in shortly, and our hearts literally broke as she immediately said there was something wrong with our precious baby girl. I started crying uncontrollably and had to lay down so I wouldn't faint. Dr. M said she wasn't exactly sure what was wrong, but that our baby probably had either a cystic hygroma, Turner syndrome, or (the worst) an encephalocele. Dr. M prayed for us and shared in our grief. She referred us to a maternal-fetal specialist, who confirmed our worst fears with the diagnosis of an occipital encephalocele the next day. The prognosis was poor. We were told that she would probably not live long, and that if she did, she probably would not have any quality of life. The exact words of one of the surgeons was that "she probably won't ever know the world around her".
The next 20 weeks of the pregnancy were filled with grief, love, prayer, and celebration for our precious daughter. We had many doctor's appointments, and Grace was also diagnosed later with microcephaly and agenesis of the corpus callosum. After much prayer, we decided to have a C-section and to make Grace a DNR. Grace was born March 4, 2011, and to our doctors' surprise, she was alive and well! You can find her birth story here. She was a fighter from the first second of her life! Our love for her was instant and more than I could have ever imagined. She had surgery to remove the (large) encephalocele and about 10% of her cerebellum when she was 5 days old. She came home when she was almost 2 weeks old. She developed hydrocephalus, and had a VP shunt placed when she was 2.5 months old.
She is now a little more than 3 months old, and she is doing really well! She has some developmental delays, but we hope to start physical and occupational therapy soon. Grace's neurosurgeon is surprised and very pleased with how well she is doing! He says that we will not know the full story on her delays until she is a little older. He predicts that she will mostly have problems with her motor skills.
I feel chosen and blessed to be Grace's momma. I thank God everyday for her life and the miracles He has done.
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