A smile from Gracie.
Yesterday when we were visiting Grace,
Riley leaned over and whispered to her, "You're going to be just fine Gracie. I promise."
My heart just wants to burst wide open when I think of how lucky I am to be his mom.
Saturday, September 25, 2010
Amazing.
The past few days have been wonderful and rough all at the same time. We've gotten such good news about Grace and each time I'd written a blog update in my head. But I just couldn't write it out. Like I was afraid that if I put it in writing it wouldn't be true. But it's been a few days now and she just keeps getting stronger! So here's what's been happening:
On Wednesday afternoon, Gracie went in for surgery to put the shunt in her head to help drain the extra fluid. It has a tube that runs into her abdomen where the extra fluid will be absorbed. She will most likely have the shunt in for the rest of her life. The doctor was able to use an adjustable shunt. This means that he can adjust it from the outside as she grows instead of having to go in surgically to replace the shunt. She will eventually need to have this one replaced with an adult shunt, but that won't be for many years.
After her surgery, they did a CAT scan to check the placement of the shunt and it was perfect. They did discover that the cause of the hemorrhage was due to a stroke. The cause of the stroke is still unknown. Since she had the stroke in-utero, her brain had the opportunity to reroute itself and she should not have any mental issues or delays as she grows. She may have some weakness on the left side of her body, which would be helped by physical therapy.
Grace is still in the NICU and will be there probably until mid next week. She is off of all types of breathing help, just has one IV and is able to eat now. She's VERY feisty with a strong grip on both hands. They are giving her Tylenol regularly for pain and to help keep her comfortable. We were able to hold her yesterday for the first time since Tuesday and she just cuddled - like she knew it was us.
I have no doubt that Gracie has been in the palm of God's hand through everything. The timing of what has happened with Grace is just too perfect to be a coincidence. If I had not had the extra ultrasound in September to check something minor, the enlarged ventricles would have never have been found. If we would have continued with the pregnancy and had a 'regular' birth, there is a good chance that Gracie could have suffered serious damage and may not have survived. Since the stroke occurred in-utero instead of during or after birth, her little brain has had the chance to heal itself instead of suffer damage that cannot be repaired. I am just amazed.
The whole family has been physically and emotionally drained, so we've tried to take a few days to spend with Riley and Brenna at home and try to get some type of normalcy back. I'm so grateful that we have such a supportive family and we haven't had to worry about whether or not they would be taken care of. I know they've enjoyed time with Bramaw Nog, Grandma and Pawpaw and Aunt Jen, but no one can tuck you in as well as mom and dad.
We're off to visit Grace again. Hopefully she'll be home with us very soon! I'll try to post pictures of her this evening.
On Wednesday afternoon, Gracie went in for surgery to put the shunt in her head to help drain the extra fluid. It has a tube that runs into her abdomen where the extra fluid will be absorbed. She will most likely have the shunt in for the rest of her life. The doctor was able to use an adjustable shunt. This means that he can adjust it from the outside as she grows instead of having to go in surgically to replace the shunt. She will eventually need to have this one replaced with an adult shunt, but that won't be for many years.
After her surgery, they did a CAT scan to check the placement of the shunt and it was perfect. They did discover that the cause of the hemorrhage was due to a stroke. The cause of the stroke is still unknown. Since she had the stroke in-utero, her brain had the opportunity to reroute itself and she should not have any mental issues or delays as she grows. She may have some weakness on the left side of her body, which would be helped by physical therapy.
Grace is still in the NICU and will be there probably until mid next week. She is off of all types of breathing help, just has one IV and is able to eat now. She's VERY feisty with a strong grip on both hands. They are giving her Tylenol regularly for pain and to help keep her comfortable. We were able to hold her yesterday for the first time since Tuesday and she just cuddled - like she knew it was us.
I have no doubt that Gracie has been in the palm of God's hand through everything. The timing of what has happened with Grace is just too perfect to be a coincidence. If I had not had the extra ultrasound in September to check something minor, the enlarged ventricles would have never have been found. If we would have continued with the pregnancy and had a 'regular' birth, there is a good chance that Gracie could have suffered serious damage and may not have survived. Since the stroke occurred in-utero instead of during or after birth, her little brain has had the chance to heal itself instead of suffer damage that cannot be repaired. I am just amazed.
The whole family has been physically and emotionally drained, so we've tried to take a few days to spend with Riley and Brenna at home and try to get some type of normalcy back. I'm so grateful that we have such a supportive family and we haven't had to worry about whether or not they would be taken care of. I know they've enjoyed time with Bramaw Nog, Grandma and Pawpaw and Aunt Jen, but no one can tuck you in as well as mom and dad.
We're off to visit Grace again. Hopefully she'll be home with us very soon! I'll try to post pictures of her this evening.
Wednesday, September 22, 2010
Monday, September 20, 2010
Frustration
We were told that today would be a flurry of activity. Doctors would be visiting, scans done, plans made... and it wasn't nearly as active as we'd hoped. They took Grace in for her MRI at 8:30. The NICU pediatrician was there and ready to read the results, so we were hoping to have a game plan set by around ten. We found out that the bleeding was not caused by a stroke and that she is no longer bleeding, both excellent pieces of news! We then just had to wait for the neurosurgeon to read the results and set the plan to fix the extra fluid in her head. So we waited, and waited..and waited...
Apparently there was an accident today and the neurosurgeon was in surgery all afternoon. There is still as small chance that we might here from him tonight, but we're pretty sure it won't be until tomorrow.
I'm frustrated. Besides the extra fluid in her head, Grace is perfect in every way. While going to visit her, I can hear baby's in the other rooms crying. I want her in MY room. I want to just take her home! I want everything to be fixed now.
I'm trying to trust God's timing in all of this. For whatever reason, this was brought to us. I don't believe the saying that, "God will never give you more than you can handle." Our pastor once made the point that God definitely does give you more than you can handle at times. But when you put your trust in Him, He will provide you with the tools you need to make it through and end up better on the other side.
So what am I going to learn from this? What weaknesses do I have that will be strengthened through this? I can't wait to get Gracie home and can't wait to see who we are as a complete family on the other side of this adventure.
Apparently there was an accident today and the neurosurgeon was in surgery all afternoon. There is still as small chance that we might here from him tonight, but we're pretty sure it won't be until tomorrow.
I'm frustrated. Besides the extra fluid in her head, Grace is perfect in every way. While going to visit her, I can hear baby's in the other rooms crying. I want her in MY room. I want to just take her home! I want everything to be fixed now.
I'm trying to trust God's timing in all of this. For whatever reason, this was brought to us. I don't believe the saying that, "God will never give you more than you can handle." Our pastor once made the point that God definitely does give you more than you can handle at times. But when you put your trust in Him, He will provide you with the tools you need to make it through and end up better on the other side.
So what am I going to learn from this? What weaknesses do I have that will be strengthened through this? I can't wait to get Gracie home and can't wait to see who we are as a complete family on the other side of this adventure.
Sunday, September 19, 2010
Good Day for Gracie
Another good day with Gracie! They began feeding her last night and she's doing fairly well. I've been able to pump a little bit and they let me nurse her twice today. Since I'm not producing too much yet they are supplementing with formula. She eats really well, but tends to spit up quite a bit afterwards. They said it was due to the pressure in her head - it's making her uncomfortable so they are giving her tylenol to help until a the pressure can be relieved. Between the feedings and her IV, she's getting plenty of nourishment. Since she is doing so well, they were able to remove the feeding tube from her nose and no longer have to track her oxygen. They do have a slight problem regulating her temperature (another issue due to the pressure in her head) but are watching it closely so it is not causing any problems. She just spends a lot of time in just her diaper because she runs so hot!
Tomorrow morning they will begin the brain scan to see what our plan of action will be. There is a possibility that they will do a minor procedure to help drain some of the fluid off of her brain to make her more comfortable. She's breathing wonderfully on her own, her blood sugar has regulated itself and she's very quick to let you know if you've irritated her! She makes the cutest squeals - they remind me of a little piglet.
Early this morning, my IV and other contraptions were removed and I've been able to walk around. It's tough at times, but feels so good to be able to get up and move! I can traipse downstairs to see Gracie by myself anytime I want. No word yet on when I'll get to come home, but it will probably still be Wednesday! The worst is not knowing when Grace can come home. I am very anxious to get the tests going so we can get her better and take her home!
Brenna refuses to look at the baby and cried when I showed her pictures of Grace. I think the sibling rivalry has begun between my girls! Hopefully once she's able to spend some time at home and we get into a routine she'll like her little sister at least a little bit! Riley is in LOVE with Grace. SInce she is in the NICU, only parents and grandparents can hold her. Riley was crushed and has to put his hands in his pockets when he visits her because he just can't help himself but want to touch her. He was really upset the first night when he found out that we were leaving her in the NICU 'by herself' and thought she needed a stuffed animal to keep her company. Grace now has a kangaroo in her bed to keep her company, thanks to her thoughtful big brother. He also didn't understand why I couldn't come home with him tonight. All of this transition is a little tough on my kiddos!
My pain medicine has fully kicked in and my eyelids are drooping! Looking forward to her tests tomorrow and getting awesome news about a quick recovery for baby Grace!
Tomorrow morning they will begin the brain scan to see what our plan of action will be. There is a possibility that they will do a minor procedure to help drain some of the fluid off of her brain to make her more comfortable. She's breathing wonderfully on her own, her blood sugar has regulated itself and she's very quick to let you know if you've irritated her! She makes the cutest squeals - they remind me of a little piglet.
Early this morning, my IV and other contraptions were removed and I've been able to walk around. It's tough at times, but feels so good to be able to get up and move! I can traipse downstairs to see Gracie by myself anytime I want. No word yet on when I'll get to come home, but it will probably still be Wednesday! The worst is not knowing when Grace can come home. I am very anxious to get the tests going so we can get her better and take her home!
Brenna refuses to look at the baby and cried when I showed her pictures of Grace. I think the sibling rivalry has begun between my girls! Hopefully once she's able to spend some time at home and we get into a routine she'll like her little sister at least a little bit! Riley is in LOVE with Grace. SInce she is in the NICU, only parents and grandparents can hold her. Riley was crushed and has to put his hands in his pockets when he visits her because he just can't help himself but want to touch her. He was really upset the first night when he found out that we were leaving her in the NICU 'by herself' and thought she needed a stuffed animal to keep her company. Grace now has a kangaroo in her bed to keep her company, thanks to her thoughtful big brother. He also didn't understand why I couldn't come home with him tonight. All of this transition is a little tough on my kiddos!
My pain medicine has fully kicked in and my eyelids are drooping! Looking forward to her tests tomorrow and getting awesome news about a quick recovery for baby Grace!
Saturday, September 18, 2010
She's Here!
Grace Elisabeth made her arrival today at 9:18 AM. She was born on 9/18 at 9:18! How cool is that?! The surgery went really well. Gracie did not want to leave her warm cocoon, so they had a bit of a time getting her out. Due to that she did have a few small bruises on her head and the right side of her face was a little swollen. She weighed 7 lbs 6 oz and is 19 inches long. She is staying in the NICU mostly for observation and to take care of her IV that she needed because her blood sugar was a little off. They will run the brain scan and other tests on Monday to see what is going on in her little noggin. The doctor is fairly certain that she will need a shunt in her head to help drain the fluid, but the swelling in her head is improving so everything just depends on the results of the scans. She is doing so well. She's very feisty and looks like a giant compared to the other babies in the NICU! We have taken several pictures and I'll try to get those posted soon.
I am doing really well. I was so nervous this morning, but everyone here has been so great and the surgery was a breeze. I'm a little sore now, but keeping the pain meds coming! I'm mostly tired, itchy (a side effect from the anesthesia) and just full of joy. It's been such a wonderful day to see her doing as well as she is. I'm on a clear liquid diet so I'm hungry and excited for hospital food tomorrow!
I'm a little scattered brain, so I hope this makes sense! I just wanted to take a few minutes to thank everyone for their support and prayers. Keep them coming! She's doing SO well, but we're not out of the woods completely just yet.
In a few minutes I get to get out of bed for the first time and be wheeled down to hold my litle fighter. I just can't wait to hold her again!
I am doing really well. I was so nervous this morning, but everyone here has been so great and the surgery was a breeze. I'm a little sore now, but keeping the pain meds coming! I'm mostly tired, itchy (a side effect from the anesthesia) and just full of joy. It's been such a wonderful day to see her doing as well as she is. I'm on a clear liquid diet so I'm hungry and excited for hospital food tomorrow!
I'm a little scattered brain, so I hope this makes sense! I just wanted to take a few minutes to thank everyone for their support and prayers. Keep them coming! She's doing SO well, but we're not out of the woods completely just yet.
In a few minutes I get to get out of bed for the first time and be wheeled down to hold my litle fighter. I just can't wait to hold her again!
Thursday, September 16, 2010
Gracie
Things didn't go quite as smoothly as we'd hoped today with the specialist. Here's the scoop - I'll try to write this as clearly as I can.
What's Going On?
Two to three months ago something happened to cause a severe hemorrhage in Gracie's brain. The bleeding caused clots, which then caused blockages in the ventricles and prevented fluid from circulating like it should.
How Did This Happen?
At this point we have no idea. There are several different potential causes:
What Does This Mean?
We won't know until after she's born. It could mean that she'll have some extra care when she's born then be completely fine. Worst case scenario could mean that she would be prone to seizures or have cerebral palsy.
What Happens Now?
The doctor determined that it is best that we have Grace as quickly as possible to start fixing the problem. So Saturday morning I will be going to the hospital for a c-section. Since there are so many unknowns still, they were concerned that a regular delivery could cause more damage. I'll be going to a bigger hospital where a team of doctors will be waiting to take care of Grace. I'll be in the hospital until at least Wednesday. They do not know how long Grace will have to stay.
After the delivery, it depends on how Grace responds as to what will happen. They'll run all the blood work, do an MRI and other tests to determine how severe (or minor) the damage is and go from there.
How Is The Family?
Jeff and I are pretty numb. We're still counting on the best case scenario for Grace, but this all has happened so quickly we feel like we've been hit by a truck. My emotions change from minute to minute from ticked off, to sad, confident - but mostly scared. There are just so many unknowns right now that I feel like we can't prepare for anything. And I can be somewhat of a control freak, so not knowing does not work well for me! Riley knows the baby is coming Saturday and is excited. I tried to tell him that the baby might be sick and won't be able to come home right away, but I don't think he got it. Brenna doesn't get it at all. :-)
That's all I can think of for now. I'm going to zone out in front of America's Funniest Home Videos for a bit and then start getting stuff ready for the big day.
The doctor told us that if we believe in a higher power, to ask for His hand in this, because that's all we can do at this point until she's delivered. So, if you'd please have a chat with the Man upstairs on our behalf, we'd be very grateful.
What's Going On?
Two to three months ago something happened to cause a severe hemorrhage in Gracie's brain. The bleeding caused clots, which then caused blockages in the ventricles and prevented fluid from circulating like it should.
How Did This Happen?
At this point we have no idea. There are several different potential causes:
- it could have been caused by a genetic issue,
- an infection (which I don't have any history of),
- an autoimmune disorder that can effect the blood, like Lupus,
- or trauma (Serious trauma like a car accident or being hit in the stomach with a baseball bat - nothing like that has happened)
What Does This Mean?
We won't know until after she's born. It could mean that she'll have some extra care when she's born then be completely fine. Worst case scenario could mean that she would be prone to seizures or have cerebral palsy.
What Happens Now?
The doctor determined that it is best that we have Grace as quickly as possible to start fixing the problem. So Saturday morning I will be going to the hospital for a c-section. Since there are so many unknowns still, they were concerned that a regular delivery could cause more damage. I'll be going to a bigger hospital where a team of doctors will be waiting to take care of Grace. I'll be in the hospital until at least Wednesday. They do not know how long Grace will have to stay.
After the delivery, it depends on how Grace responds as to what will happen. They'll run all the blood work, do an MRI and other tests to determine how severe (or minor) the damage is and go from there.
How Is The Family?
Jeff and I are pretty numb. We're still counting on the best case scenario for Grace, but this all has happened so quickly we feel like we've been hit by a truck. My emotions change from minute to minute from ticked off, to sad, confident - but mostly scared. There are just so many unknowns right now that I feel like we can't prepare for anything. And I can be somewhat of a control freak, so not knowing does not work well for me! Riley knows the baby is coming Saturday and is excited. I tried to tell him that the baby might be sick and won't be able to come home right away, but I don't think he got it. Brenna doesn't get it at all. :-)
That's all I can think of for now. I'm going to zone out in front of America's Funniest Home Videos for a bit and then start getting stuff ready for the big day.
The doctor told us that if we believe in a higher power, to ask for His hand in this, because that's all we can do at this point until she's delivered. So, if you'd please have a chat with the Man upstairs on our behalf, we'd be very grateful.
Tuesday, September 14, 2010
One Song Wednesday (on a Tuesday night)
Nervous about tomorrow. Trusting that every little thing is gonna be all right.
Monday, September 13, 2010
Scary Stuff
Last week during an ultrasound I got some very unexpected news. There was something "off" about the baby. The radiologist couldn't give me any information because "he's not a doctor and I would have to speak to my doctor about it", but the words "baby...enlarged ventricle...brain....spine...sudden" were floating around the room. Terrifying words to hear, especially when you aren't given any more information than that. My doctor was out of the office already, but thankfully I had an appointment scheduled already with her first thing the following morning. She advised me that the ultrasound seem to show that the baby had an enlarged ventricle in her brain. It can mean several things: hydrocephalus, spina bifida, and many other scary things you can find if you google it (Note to self: Never google something if you don't want to see the absolute worst case scenarios.)
Since it was showing up so late in my pregnancy and wasn't there at a previous ultrasound just three weeks ago, my doctor was convinced it was an error or a fluke but referred me to a specialist just to be sure. After a more detailed ultrasound, the specialist agreed that the ventricle was enlarged, but gave us some very encouraging news. In the brain there are three ventricles. The one that is enlarged in Grayce's brain is the one that produces spinal fluid. It then dumps it into the second chamber to be distributed around the brain via small channels. He made it clear that there are no definites in medicine, but with his previous experience, he felt the issue was that the channels going from one ventricle to the next just haven't been developed fully. Since there are no other signs of abnormalities - no blood clots or tumors that could cause a blockage and she is perfectly healthy in every other way. To quote him:
I'd appreciate any prayers and positive thoughts you can send our way early Wednesday morning when I'm in the MRI and again Friday afternoon when we meet with the specialist. And as a "Thank You" in advance, I'm leaving you with a menu and the song that inspired Graycie's name. :-)
Monday - Chicken, bacon, ranch sandwiches
Tuesday - Tacos
Wednesday - Baked Ziti
Thursday - Hamburgers
Friday - Breakfast burritos and sprinkle pancakes (more about these later in the week!)
Since it was showing up so late in my pregnancy and wasn't there at a previous ultrasound just three weeks ago, my doctor was convinced it was an error or a fluke but referred me to a specialist just to be sure. After a more detailed ultrasound, the specialist agreed that the ventricle was enlarged, but gave us some very encouraging news. In the brain there are three ventricles. The one that is enlarged in Grayce's brain is the one that produces spinal fluid. It then dumps it into the second chamber to be distributed around the brain via small channels. He made it clear that there are no definites in medicine, but with his previous experience, he felt the issue was that the channels going from one ventricle to the next just haven't been developed fully. Since there are no other signs of abnormalities - no blood clots or tumors that could cause a blockage and she is perfectly healthy in every other way. To quote him:
I'm going to assume that this baby is perfectly healthy until proven otherwise. If you hadn't had an ultrasound this late, no one would have known of this 'issue' and she would have grown up to be Einstein.But since they DID find the 'issue', I have to have an MRI next week and meet with the specialist again to confirm that no other abnormalities are present. So while there are no absolute answers yet (and truthfully won't be until after she's born), we're very encouraged that our little girl is just fine.
I'd appreciate any prayers and positive thoughts you can send our way early Wednesday morning when I'm in the MRI and again Friday afternoon when we meet with the specialist. And as a "Thank You" in advance, I'm leaving you with a menu and the song that inspired Graycie's name. :-)
Monday - Chicken, bacon, ranch sandwiches
Tuesday - Tacos
Wednesday - Baked Ziti
Thursday - Hamburgers
Friday - Breakfast burritos and sprinkle pancakes (more about these later in the week!)
Friday, September 10, 2010
Super
There are many reasons why I cannot wait to have this baby. One of them happens to be the fact that I know there will be a point in time where my family will be home sleeping, a nurse will offer to take Graycie to the nursery so I can rest and there will be a small period of time where it will be quiet. No one climbing on me, demanding my attention...
For a bit I wondered what these thoughts meant. Am I a bad mother for looking forward to the time when they whisk her away? I've concluded that no, I'm not a bad mother. Just a very tired one. :-)
Any thoughts you've had lately that inspired that wonderful feeling known as mommy guilt?
For a bit I wondered what these thoughts meant. Am I a bad mother for looking forward to the time when they whisk her away? I've concluded that no, I'm not a bad mother. Just a very tired one. :-)
Any thoughts you've had lately that inspired that wonderful feeling known as mommy guilt?
Wednesday, September 8, 2010
One Word (Phrase!) Wednesday
If a squash can make you smile...
(I've picked three yellow squash from my garden. Two of them get 'veggie-napped' by this little one. She plays with them, tries to sleep with them...I'm pretty sure she thinks it's a character from VeggieTales and it will sing with her someday.)
Wednesday, September 1, 2010
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