Ruthie is doing well enough to be out of the main part of the CICU and into it's annex. We are in 7 West, techinically, but we still are part of the CICU. She will still have one on one nurses and the same doctors. The main difference is that we are not a room that needs a vent and we are not around the main desk. Unfortunately the unit is getting crowded and they need more space for the "sicker" kids that need life support, ecmo, etc. This is really exciting because that means Ruthie is stable and they feel comfortable moving her. However, it is sad because another family needs that room and that care. It is a huge mix of emotions.
Right now I am so grateful that Ruthie is doing well. Prayers are definitely answered! We have been praying that Ruth would get stronger and be able to endure her waiting time period. Thus far, she has proven to be a trooper and fighter! Thank God for giving her strength and patience.
Thank you all for your continued support. Without the prayers, advice, and open hearts we would not be able to face this situation head on. Please continue to pray for Ruthie and all of her heart buddies. These little ones don't even know what the world has in store, but yet they venture on. They are determined to make their mark on this world. Pray for the families of these brave and amazing children. Pray for Cameron as they prepare for his post Glenn chest closure tomorrow. Pray for Jacob who is off the vent, infection free and ready for his norwood tomorrow. Pray for Ben who is recovering and hoping for a closed chest in a few days. Pray for Lorenzo as he keeps getting bigger. Pray for Derrick as he marches on post Glenn and as cute as ever. Pray for Maggie who is post fontan and becoming more and beautiful and precious. Pray her mommy Faith too as she prepares for little Evie to meet her world.
I forgot the memory card for the camera at home today so pictured of her new room and set up will have to wait until tomorrow!
God bless and protect you!
Laura
Wednesday, March 31, 2010
Sunday, March 28, 2010
Moving on up!
We have BIG BIG plans this week for Ruthie.
As long as things continue in the right direction, Ruthie will graduate from the CICU this week:) YAY! Things are looking up for her, despite the situation she is in.
She has been extubated for two and a half weeks now and really holding her own. She is only on half a liter of oxygen through nasal cannulas. She is no longer on continuous IV pain meds. We have weened her down off of continuous IV fentanoyl to morphine orally every 4 hours and from continuous IV precedex to adavan every 8 hours. We are currently weening down her dex to get her off of it completely and onto another oral medication. Ruthie is also starting to gain weight. She is almost 3 pounds heavier than when she was admitted to Childrens (which puts her at 12.7 lbs)! She is really doing quite well.
If everything goes as planned and Ruthie does not have any new issues, then to 7 West we go!
WHAT A BIG STEP!
So right now we are just waiting and we don't need to wait in the CICU if she is not critical. That is so amazing to say and to hear. I love when they do "rounds" on Ruth. The "rounds" usually last for 2-3 minutes, on her "bad" days, and 30 seconds or less on her "Ruthie" good days. It is wonderful when they say all we are doing is waiting. But in the same breath, "waiting" is not so wonderful. It is hard to know that your daughter's heart is not going to get better on its own. Its hard to think about how long we may have to wait. Its even harder to imagine waiting with a critically ill baby.
We are so fortunate. We are so lucky. We are so blessed. Ruthie is such a trooper. She is so strong. She makes waiting on a heart seem easy and so non-important. She really helps us forget the seriousness of the matter when she just smiles and plays. She is a model of strength and endurance.
We are so thankful for Ruthie. She is a miracle to us. Her spirit shows God's true compassion and love. She is an inspiration to us. Thank you God for giving her to this world. Thank you for helping her endure her cross.
Thank you for putting us into the marvelous hands' of the SLCH staff, nurses, and doctors.
Thank you for our family and friends who makes this load easier to bear.
Thank you God for being there to give us hope and courage.
We turn our lives over to God and know that with Him we are able to get through anything.
Enjoy the pictures below.
Over the past 2 weeks, we have had some fun!
The first time in 5 weeks that I held Ruthie!! The day before extubation!
Dad's turn to hold her and make her smile!
Tube Free and Sleepy!
Getting to play!
Happy St. Patricks Day!
Playing with my St. Patricks's Day beads! I pretend I am Irish!
More pictures to follow, the card reader is fixed!!
Prayers for Ben, Jacob, Cameron, Lorenzo, Derrick, Audrey, Gabriella, Alexander, Maggie, and all the heart babies near and far. What you may lack in a heart, you make up for in strength, courage, endurance, peace, happiness, and love. You are Earthly angels. I pray for you and your families!
Heart hugs!
Laura
As long as things continue in the right direction, Ruthie will graduate from the CICU this week:) YAY! Things are looking up for her, despite the situation she is in.
She has been extubated for two and a half weeks now and really holding her own. She is only on half a liter of oxygen through nasal cannulas. She is no longer on continuous IV pain meds. We have weened her down off of continuous IV fentanoyl to morphine orally every 4 hours and from continuous IV precedex to adavan every 8 hours. We are currently weening down her dex to get her off of it completely and onto another oral medication. Ruthie is also starting to gain weight. She is almost 3 pounds heavier than when she was admitted to Childrens (which puts her at 12.7 lbs)! She is really doing quite well.
If everything goes as planned and Ruthie does not have any new issues, then to 7 West we go!
WHAT A BIG STEP!
So right now we are just waiting and we don't need to wait in the CICU if she is not critical. That is so amazing to say and to hear. I love when they do "rounds" on Ruth. The "rounds" usually last for 2-3 minutes, on her "bad" days, and 30 seconds or less on her "Ruthie" good days. It is wonderful when they say all we are doing is waiting. But in the same breath, "waiting" is not so wonderful. It is hard to know that your daughter's heart is not going to get better on its own. Its hard to think about how long we may have to wait. Its even harder to imagine waiting with a critically ill baby.
We are so fortunate. We are so lucky. We are so blessed. Ruthie is such a trooper. She is so strong. She makes waiting on a heart seem easy and so non-important. She really helps us forget the seriousness of the matter when she just smiles and plays. She is a model of strength and endurance.
We are so thankful for Ruthie. She is a miracle to us. Her spirit shows God's true compassion and love. She is an inspiration to us. Thank you God for giving her to this world. Thank you for helping her endure her cross.
Thank you for putting us into the marvelous hands' of the SLCH staff, nurses, and doctors.
Thank you for our family and friends who makes this load easier to bear.
Thank you God for being there to give us hope and courage.
We turn our lives over to God and know that with Him we are able to get through anything.
Enjoy the pictures below.
Over the past 2 weeks, we have had some fun!
The first time in 5 weeks that I held Ruthie!! The day before extubation!
Dad's turn to hold her and make her smile!
Tube Free and Sleepy!
Getting to play!
Happy St. Patricks Day!
Playing with my St. Patricks's Day beads! I pretend I am Irish!
More pictures to follow, the card reader is fixed!!
Prayers for Ben, Jacob, Cameron, Lorenzo, Derrick, Audrey, Gabriella, Alexander, Maggie, and all the heart babies near and far. What you may lack in a heart, you make up for in strength, courage, endurance, peace, happiness, and love. You are Earthly angels. I pray for you and your families!
Heart hugs!
Laura
Friday, March 12, 2010
Freedom!
As I said last post, prayers are definitly being answered. On Wednesday, Ruthie was stable enough for Josh and I to hold her with the breathing tube in!!! Woo hoo! It was short lived, of course, but it felt so good. She was so calm the entire time and even cracked a few smiles. It was well worth the wait of 5 weeks!
The following day, Thursday, things got even better. At 11:15 am, Ruthie was extubated! The doctors made her NPO at 3 am and then took down her sedation at 7am to get her ready to breath all on her own. Yesterday was a bumpy day. Ruthie was a bit uncomfortable after they took down her sedation meds. She is doing "decent" with all of these changes. She isn't smiley happy Ruth right now, which hurts my heart, but she is doing ok. She is fighting right on. Over night last night, they took Ruthie off cpap and nasal canualas. This means she is breathing 100% on her own. She is really doing well. They expect her to take a few readjustment days. We will just have to wait and see what she does.
So, it has been a touch and go over the past 24 hours, but we are hoping Ruthie will make it happen. She is so strong and such a fighter! I know she will give her best effort. She just looks too darn cute not too.
I will post pictures later once I am home with the camera.
Prayers are being answered! Keep praying. Keep praying for all heart babies and their families. Pray for courage and strength. Pray fot wisdom and guidance. Pray for compassion and peace.
Keep in mind, Jacob will be making his entrance in a week! Pray for his strength and his family's understanding. Pray for Derrick who is moving right along and is back eating good yummy real food! Pray for Lorenzo as he awaits to hear about his next steps. Pray for Cameron as he approaches his Glenn.
Thank you to all of our supporters. Your advice, guidance, support and prayers are amazing. We are really blessed to have a strong community backing us.
It takes a village to raise a child. Thank you for being our village.
Heart hugs!
Laura
The following day, Thursday, things got even better. At 11:15 am, Ruthie was extubated! The doctors made her NPO at 3 am and then took down her sedation at 7am to get her ready to breath all on her own. Yesterday was a bumpy day. Ruthie was a bit uncomfortable after they took down her sedation meds. She is doing "decent" with all of these changes. She isn't smiley happy Ruth right now, which hurts my heart, but she is doing ok. She is fighting right on. Over night last night, they took Ruthie off cpap and nasal canualas. This means she is breathing 100% on her own. She is really doing well. They expect her to take a few readjustment days. We will just have to wait and see what she does.
So, it has been a touch and go over the past 24 hours, but we are hoping Ruthie will make it happen. She is so strong and such a fighter! I know she will give her best effort. She just looks too darn cute not too.
I will post pictures later once I am home with the camera.
Prayers are being answered! Keep praying. Keep praying for all heart babies and their families. Pray for courage and strength. Pray fot wisdom and guidance. Pray for compassion and peace.
Keep in mind, Jacob will be making his entrance in a week! Pray for his strength and his family's understanding. Pray for Derrick who is moving right along and is back eating good yummy real food! Pray for Lorenzo as he awaits to hear about his next steps. Pray for Cameron as he approaches his Glenn.
Thank you to all of our supporters. Your advice, guidance, support and prayers are amazing. We are really blessed to have a strong community backing us.
It takes a village to raise a child. Thank you for being our village.
Heart hugs!
Laura
Tuesday, March 9, 2010
Waiting on a Heart never looked so good!
One of the first days Ruthie smiled at us!
Ruthie showing off her new outfit and her bouncy seat in the CICU!
Over the past 6 weeks....
We have been on quite a roller coaster over the past 6 weeks. Ruth has gone from planning on the Glenn procedure to being listed for a heart transplant. She has endured a heart cath, a lung biopsy, a liver biopsy, a sedated MRI, numerous ultrasounds, countless x-rays and echoes and of course PICC lines, Art lines, Central lines, a Foley cath, NG suction, NJ feeding and I am sure I am missing things. However, throughout it all she has been a trooper. She has finally recovered from all the poking and prodding and is in the "upswing of things", per say. She only has one central line in called a double broviac IV that is located in her chest. She is on a handful of IV meds that help her stay comfortable while she is waiting. She still has her NJ in for feedings, which by the way she is now at 30 mils an hour... so for those who don't want to do the math that is 24 ounces of 24 calorie formula a day!!. WAY TO GO RUTH! Ruthie is on the ventilator still, but her vent settings have changed. She is tolerating being on Volume support instead of Pressure support. Her doctors last week said that her moving to Volume support was a huge MILESTONE for her! YAY! She is currently anywhere from 25% to 35% O2 on the vent and her o2 sats have been from 68-85.
Besides some medical tweaking, Ruthie has not had any major issues. She is sitting up in her bouncy seat and sometimes in her boppy. She is starting to smile more and more each day. She is even giving some of her favorite nurses smiles. They are pretty heart melting. Some of her nurses will stop by (even on days they don't have her) to visit and to get one of those amazing grins.
And on an even better note, she is now able to wear clothes again!!! The doctors feel that there is really nothing to do but wait and since she is so "stable" we can dress her up! WOO HOO! It is so nice to see her in clothes again. Ruthie is pretty excited that she is back into clothes too. What girl wouldn't be? No longer just laying there naked and on display.
So all and all, things are going well. Ruthie is truly holding her own. She is resting up and becoming stronger each and every day. Everyone (nurses, doctors, family) can't believe how well she is doing. They keep saying that the stronger she is now, the better she will do during and after the transplant. So let's get big, strong and happy:) Check, check, and a BIG check on happy!
Now we just wait. I am once again hear the words Dr. Huddleson spoke after we were listed, "This is the most frustrating time". Amen to that! Amen! Waiting is so hard, so demanding, so confusing, so emotional. We just hurry up and wait. But if waiting is what we must do in order for Ruthie not only to get a heart, but the BEST, most suitable, heart for her, then we will wait as patiently as we can.
I am not going to lie, it isn't easy waiting. Every morning, I wake up a little disappointed that I slept through the night without a "heart transplant" phone call. Every time we go to rounds, I am holding my breath thinking maybe today they will say, "Okay, so the plans for the day are to get Ruthie new heart". Just hoping and praying every time Dr. Cantar or Dr. Huddleson walk by that this is the time they walk into the room and tell us, "Lets get going!"
But alas, I really do not have any complaints. I love SLCH! I love the staff! I love the nurses, the doctors, the techs, the respiratory team. I am amazed at the amount of compassion people show to one another within these walls. Everyday there is another miracle being performed. But at the same time, everyday there is another angel being called home. It is such a heart-filled intense place.
We have an amazing support group of family and friends. They are there to visit, to talk to, to cry to and with, and to call at a moments' notice when I feel overwhelmed. I appreciate all of our family members that have made this journey so much more bearable. You never realize how many people care until you hit those tough times. Well we have had our tough times, and the support has been tremendous. It is truly amazing! Our friends and family are the glue that hold us together.
Ruthie is so blessed to have each and everyone of your in her life. She is receiving so much love, support and best of all prayers. And these prayers are being answered. We prayed that Ruthie would be listed and that happened. We prayed that she would become stronger and healthier for her transplant and that has happened. Now we are praying that we have the strength to wait. We pray that God will grant us courage, strength and patience. We pray for the family who will eventually turn into Ruth's donating family. We pray for their comfort and peace. We pray that God will guide them throughout their struggles. We pray that each family that is in such a life changing situation will be guided to donation. We pray.
So between praying and waiting, we are still here. We are still ready to fight. We are still ready to wait. We are here for the ride. We know that God's timing is perfect and that His will is what we need to follow. He has a plan for each one of us and we just hope that whatever His plan is for us, especially Ruthie, that we can handle the outcome. We pray and then we turn our lives over to Him.
Sorry about the long wait for another posting. And sorry this posting is forever long. I am going to focus more on blogging again now that I feel like we are at a standstill.
Thank you to everyone!
God Bless!
Laura
Besides some medical tweaking, Ruthie has not had any major issues. She is sitting up in her bouncy seat and sometimes in her boppy. She is starting to smile more and more each day. She is even giving some of her favorite nurses smiles. They are pretty heart melting. Some of her nurses will stop by (even on days they don't have her) to visit and to get one of those amazing grins.
And on an even better note, she is now able to wear clothes again!!! The doctors feel that there is really nothing to do but wait and since she is so "stable" we can dress her up! WOO HOO! It is so nice to see her in clothes again. Ruthie is pretty excited that she is back into clothes too. What girl wouldn't be? No longer just laying there naked and on display.
So all and all, things are going well. Ruthie is truly holding her own. She is resting up and becoming stronger each and every day. Everyone (nurses, doctors, family) can't believe how well she is doing. They keep saying that the stronger she is now, the better she will do during and after the transplant. So let's get big, strong and happy:) Check, check, and a BIG check on happy!
Now we just wait. I am once again hear the words Dr. Huddleson spoke after we were listed, "This is the most frustrating time". Amen to that! Amen! Waiting is so hard, so demanding, so confusing, so emotional. We just hurry up and wait. But if waiting is what we must do in order for Ruthie not only to get a heart, but the BEST, most suitable, heart for her, then we will wait as patiently as we can.
I am not going to lie, it isn't easy waiting. Every morning, I wake up a little disappointed that I slept through the night without a "heart transplant" phone call. Every time we go to rounds, I am holding my breath thinking maybe today they will say, "Okay, so the plans for the day are to get Ruthie new heart". Just hoping and praying every time Dr. Cantar or Dr. Huddleson walk by that this is the time they walk into the room and tell us, "Lets get going!"
But alas, I really do not have any complaints. I love SLCH! I love the staff! I love the nurses, the doctors, the techs, the respiratory team. I am amazed at the amount of compassion people show to one another within these walls. Everyday there is another miracle being performed. But at the same time, everyday there is another angel being called home. It is such a heart-filled intense place.
We have an amazing support group of family and friends. They are there to visit, to talk to, to cry to and with, and to call at a moments' notice when I feel overwhelmed. I appreciate all of our family members that have made this journey so much more bearable. You never realize how many people care until you hit those tough times. Well we have had our tough times, and the support has been tremendous. It is truly amazing! Our friends and family are the glue that hold us together.
Ruthie is so blessed to have each and everyone of your in her life. She is receiving so much love, support and best of all prayers. And these prayers are being answered. We prayed that Ruthie would be listed and that happened. We prayed that she would become stronger and healthier for her transplant and that has happened. Now we are praying that we have the strength to wait. We pray that God will grant us courage, strength and patience. We pray for the family who will eventually turn into Ruth's donating family. We pray for their comfort and peace. We pray that God will guide them throughout their struggles. We pray that each family that is in such a life changing situation will be guided to donation. We pray.
So between praying and waiting, we are still here. We are still ready to fight. We are still ready to wait. We are here for the ride. We know that God's timing is perfect and that His will is what we need to follow. He has a plan for each one of us and we just hope that whatever His plan is for us, especially Ruthie, that we can handle the outcome. We pray and then we turn our lives over to Him.
Sorry about the long wait for another posting. And sorry this posting is forever long. I am going to focus more on blogging again now that I feel like we are at a standstill.
Thank you to everyone!
God Bless!
Laura
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