It is so good to be home! Everything is just better when you are home. Our sweet neighbors decorated our porch to welcome us. Our traveling went very smoothly, had a long layover in Detroit, but Mary Graham really did well (valium probably helped :), except for about the last 20 minutes of our last flight into Birmingham and i'm not surprised because of the lady in front of us was throwing up (very loudly) the entire desent...thought I was going to die, although it's pretty funny now. Loftin and Lucy and my parents met us at the airport and it was so great to see them all, and the realization of all we had been through alone, without family and friends near us, hit me hard. But, thank goodness for texting, email, and internet....your messages made us feel like we weren't so far away. And we were truly forced to depend on God completely, for He had so much to teach us about trust and still is.
Mary Graham is doing pretty well, she is up and down and really wants me holding her much of the time-she cries when she's put down. Kind of like having a newborn again :) I believe all that she went through was very traumatizing and will take time for her to heal, both physically and mentally. Although, I know many have said that she will not remember any of this, she still knows. She is and was very aware of it all. God can heal those wounds too though. She has smiled a little more, given us a few laughs and I know she will only continue to improve. Her incisions are looking better, and part of her back blistered up (which is normal they said) and it is starting to heal also. Thank you for continuing to pray for her healing.
Also, when we left Birmingham, it was Winter and now it's Spring and everything has bloomed-it was beautiful driving to our house from the airport and reminded me of the song, "Every Season" by Nicole Nordeman and she compares winter to the harder seasons in our life, how God is in every season, teaching us, growing us until we are ready for the next season. And there will always be a new season.
And then the end of the song....
And what was frozen through is newly purposed, turning all things green, And so it is with You and how you make me new with every season's change, And so it will be as you are recreating me...summer, autumn, winter, spring.
The harder seasons make the new ones much more beautiful.
Sunday, March 25, 2012
Friday, March 23, 2012
Is this all worth it?
I have asked the above question in the middle of lots of very low and scary moments with Mary Graham's recovery these last couple weeks. Lee and I were talking about all the steps we took to bring us here over this last year and both agreed that everything has been so clear that led us to Dr. Campbell and CHOP and I know for certain that this is where God has needed us to be to help Mary Graham. Lee, being the Seinfeld fan that he is, said he kept thinking about the episode where Putty is wearing the 8 ball jacket and says, "All signs point to yes!" God can even speak to us through Seinfeld :).... but he has just felt a peace that all our signs pointed to "yes"....meaning this IS where we need to be. All these details have been covered in prayer and He has made our steps firm. We have learned over this last year that MG's scoliosis is one that is progressive and stiff, it would not get better, just worse and her lung quality, already starting to diminish, would worsen with time. These veptr rods have opened up her ribs, giving her lungs room to grow, more room to breathe. And, they have inadvertently straightened her spine some. It is a long road ahead, with expansions and rod replacement surgeries in the years to come. But we praise God for leading us here, the place where we could give MG a much better quality of life.
These last two weeks have been long and hard, many times extremely scary for us and Mary Graham. Looking at her scars for the first time was hard to see, but they will heal and fade. Just like trials in our lives - they may leave scars, but God heals and what's left is a reminder of His love and grace. God has been faithful to lead us through all of this and it reminds me of the verse in Isaiah 43, "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."
When. A word that says we will have trials, but how sweet our Savior is that He will never leave us.
God has opened my eyes to great pain and suffering all around us, and I have seen so much brokeness and a world that truly needs a Savior. I have met families who have a child that has spent months in the hospital, some even years. Everyone has a story. But, as hard as it is to see all this and experience our own pain, I have a renewed since of hope, so much more deeply thankful for our Lord and the blessings he has poured out on us. Blessings that are seen more brightly after these dark days.
I was thinking back to when I gave birth to Mary Graham one year ago, I loved her immediately, she was perfect and she was mine. Then when MG was just a few weeks old we began to notice her back, her hips and muscles, some of the things about her didn't seem quite right....I grieved after all the initial doctor visits...but I still loved her and she still was mine. God has shown me His love for me and Lee, for our family and for Mary Graham. As a parent we are able to get a glimpse of how God sees us.....broken and sinful. But he looks at me and still says, she's mine. He loves us no matter what. It's a beautiful picture of His grace and love. And above all the positive results of her veptr implant surgery, getting to experience this grace and love has made it all worth it.
The best news of the week...we are getting discharged today and flying home tomorrow! I am forever grateful for your prayers through all of this. Please continue to pray for MG over the next several weeks as she continues to heal and handle her pain. Pray for no complications or infection and for her spine and ribs to continue to grow and her lungs to develop. As we have been told, the spine is often hard to predict-but so is everything in life I have come to realize. We will return July 24th for her first expansion surgery - we have been reassured many times that this is nothing like the implant surgery, hopefully just a couple nights in the hospital. But we will not look that far ahead just yet. Pray for our transition back to real life and I look forward to thanking many of you face to face for your faithfulness to pray.
The song that has been in my mind, one of Lucy's favorites, seems to sum it up perfectly....
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above the heavenly hosts
Praise Father, Son and Holy Ghost.....Amen.
These last two weeks have been long and hard, many times extremely scary for us and Mary Graham. Looking at her scars for the first time was hard to see, but they will heal and fade. Just like trials in our lives - they may leave scars, but God heals and what's left is a reminder of His love and grace. God has been faithful to lead us through all of this and it reminds me of the verse in Isaiah 43, "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."
When. A word that says we will have trials, but how sweet our Savior is that He will never leave us.
God has opened my eyes to great pain and suffering all around us, and I have seen so much brokeness and a world that truly needs a Savior. I have met families who have a child that has spent months in the hospital, some even years. Everyone has a story. But, as hard as it is to see all this and experience our own pain, I have a renewed since of hope, so much more deeply thankful for our Lord and the blessings he has poured out on us. Blessings that are seen more brightly after these dark days.
I was thinking back to when I gave birth to Mary Graham one year ago, I loved her immediately, she was perfect and she was mine. Then when MG was just a few weeks old we began to notice her back, her hips and muscles, some of the things about her didn't seem quite right....I grieved after all the initial doctor visits...but I still loved her and she still was mine. God has shown me His love for me and Lee, for our family and for Mary Graham. As a parent we are able to get a glimpse of how God sees us.....broken and sinful. But he looks at me and still says, she's mine. He loves us no matter what. It's a beautiful picture of His grace and love. And above all the positive results of her veptr implant surgery, getting to experience this grace and love has made it all worth it.
The best news of the week...we are getting discharged today and flying home tomorrow! I am forever grateful for your prayers through all of this. Please continue to pray for MG over the next several weeks as she continues to heal and handle her pain. Pray for no complications or infection and for her spine and ribs to continue to grow and her lungs to develop. As we have been told, the spine is often hard to predict-but so is everything in life I have come to realize. We will return July 24th for her first expansion surgery - we have been reassured many times that this is nothing like the implant surgery, hopefully just a couple nights in the hospital. But we will not look that far ahead just yet. Pray for our transition back to real life and I look forward to thanking many of you face to face for your faithfulness to pray.
The song that has been in my mind, one of Lucy's favorites, seems to sum it up perfectly....
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above the heavenly hosts
Praise Father, Son and Holy Ghost.....Amen.
Thursday, March 22, 2012
Just waiting
Today we are just waiting on Mary Graham to start drinking, she has eaten pretty well, but the doctors really want her to drink and she is refusing formula, pediasure, applejuice....we've tried it all. Her stomach has been the main issue, still been pretty upset since last night, but hoping it's settling some more now. So, they have still been giving her fluid off and on and everytime they hook her back up via IV that keeps us here longer.
Dr. Campbell said it's three-fold that determines when she gets discharged....pain management, nutrition, and stability. We feel her pain is managed, she's only on tylenol and motrin, they were worried the heavier meds were attributing to her stomach issues. Her stability is pretty good and she's getting more comfortable being moved around, still weak though. So, nutrition is the key. Please pray for her to drink and eat better over the next 24 hours. We are still in ICU and may never make it to the floor. Hoping that we can possibly be discharged late tomorrow if she does well. She is still giving us some smiles, that's so good to see. We are growing a little weary, but so thankful she has come so far. One friend emailed us and said she is praying us home....looking forward to that day.
Dr. Campbell said it's three-fold that determines when she gets discharged....pain management, nutrition, and stability. We feel her pain is managed, she's only on tylenol and motrin, they were worried the heavier meds were attributing to her stomach issues. Her stability is pretty good and she's getting more comfortable being moved around, still weak though. So, nutrition is the key. Please pray for her to drink and eat better over the next 24 hours. We are still in ICU and may never make it to the floor. Hoping that we can possibly be discharged late tomorrow if she does well. She is still giving us some smiles, that's so good to see. We are growing a little weary, but so thankful she has come so far. One friend emailed us and said she is praying us home....looking forward to that day.
Wednesday, March 21, 2012
Mary, Philly, Suffering and Smiles
The title of this blog seems a bit scattered, just trying to piece together all these thoughts and what God has placed on my heart. Mary Graham is doing really well, except for some stomach issues, she is really making strides. We are so grateful and I'm confident that she will keep improving. Please pray for her stomach issues to resolve, her appetite to improve and her incisions to stay clear of infection. They changed her dressings on her back last night and we were able to see her incisions for the first time...more on that later. MG has been doing so well today, they may just keep us one more night in ICU and then discharge us tomorrow. Pictures seem to be the best way to show how she's doing. The best thing about today, we have gotten lots of smiles today, even a little laugh.
Around here MG is known as "Mary." It has been rather funny to me, anytime I have tried to correct a nurse or doctor or whoever comes by that we actually call her Mary Graham, I get some very interesting looks and then I feel the need to say, "we are from the south, you know, lots of double names are used in the south, it's very common." This usually doesn't change much of the reaction, so I have given up, and just letting her be know as "Mary" up here in Philly :)
After having spent so much time in Philadelphia lately, I have come to really like this city and I will look forward to returning here in the years to come. The hospital and RMH are in a great university area, always lots of people around. Both of us really enjoy being able to walk everywhere. The city is very diverse and I have been thinking so much how it's so different from our home back in Birmingham. It has been so good for me to get outside of the "bubble" that we live in....so good for me to see a bigger part of our world and begin to see things differently. Especially the life of a big Children's hospital like CHOP, you see so much, so many different people with sick children, from all over, and all walks of life. God has really shown me how suffering and pain in this world is so very real, not just in looking at our dark days over the last several days, but looking around me....being able to look above my own sufferings. Right now they just moved a very sick 6 month old baby in our room and are working on her, about to intubate her. Yesterday our roomate was a 3 month old baby who had just undergone brain surgery. It's so much to comprehend at times. How does anyone go through this without faith? Many of you have reminded me of the verse in 2 Corinthians, "for just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ." Jesus knows suffering, and when experiencing suffering, this makes his comfort and compassion that much greater. And he knows the pain of these little ones, and that has been a great source of comfort for me as I watch Mary Graham go through so much pain. As hard as this has been, God is using this time, this trial, to show me so much more......I believe great suffering produces a greater joy.
Always grateful for your continued prayers. God has poured out his blessings....now MG is babbling in her bed, think they will kick us out of here very soon.
Tuesday, March 20, 2012
Day 7
Mary Graham was in a lot of pain this morning and hasn't been eating much - her stomach seems to really be bothering her and she threw up today. However, we seem to have gotten to a good place with her pain and I am thinking much of her discomfort is due to her tummy now. She has slept more peacefully today and we are so thankful for the progress she has made in the last 48 hours. She really is doing so well.
These are the three ICU doctors that have become my best friends :) I love these ladies and have actually really gotten to know them....they are superstars. They have fallen in love with MG and seem to care about our family so much-this has been a huge blessing. They have taken lots of time to talk with us, especially me, when I ask millions of questions and need extra reasurance. God sent the perfect team for MG and us and they are always asking how we are holding up and let me cry to them when things have been so hard-they truly care. They were laughing when I was taking their picture after rounds this morning, they said they had heard I was going to snap of picture of them. We will be back to visit them every four months when we come back for expansion surgeries.
And here is a sweet picture of Mary Graham, only one IV left in her. No more oxygen, feeding tube or central line. Thank you so much for continuing to pray for her recovery.
These are the three ICU doctors that have become my best friends :) I love these ladies and have actually really gotten to know them....they are superstars. They have fallen in love with MG and seem to care about our family so much-this has been a huge blessing. They have taken lots of time to talk with us, especially me, when I ask millions of questions and need extra reasurance. God sent the perfect team for MG and us and they are always asking how we are holding up and let me cry to them when things have been so hard-they truly care. They were laughing when I was taking their picture after rounds this morning, they said they had heard I was going to snap of picture of them. We will be back to visit them every four months when we come back for expansion surgeries.
And here is a sweet picture of Mary Graham, only one IV left in her. No more oxygen, feeding tube or central line. Thank you so much for continuing to pray for her recovery.
Monday, March 19, 2012
Day 6~Great things
"But it was your own eyes that saw all these great things the LORD has done." Deut. 11:7
I apologize for being so late in updating today, we have been busy with MG and I have been pretty wiped out. Last night she did well, was awake a ton and I have gotten to hold her, which has been such a blessing. She is very uncomfortable and they are still working on her pain management. She is weak, which is to be expected and has yet to smile, but I know it will come. Today Mary Graham has been awake and looking so much more like herself. She has come so far in the last 24 hours. Little by little pumps and IVs have been disappearing and I've even heard the doctors mentioning when we may get discharged... possibly at the end of this week. We are going to remain in the ICU until discharge, which is perfectly fine with me. We are so thankful for this hospital and the doctors and nurses.
So, we ask you to continue to pray for her recovery and healing, which still has a ways to go. Pray for her pain and discomfort. She also is definitely more like herself because she cries when anyone messes with her.
We have witnessed many great things from the Lord and I have been mentally trying to look back over the last several days and remember. The sweet family, the Bishops that I met on the VEPTR facebook group months ago have been a huge blessing to us. Their 10 year old daughter, Katie, had her surgery the same day as MG and we got to spend some time with them at the RMH the night before. As some of you know, they then became our roomates up here in ICU. The mother and I have been able to support each other as our daughters go through all this. I was telling one of the nurses about how we met and ended up together in ICU and she said, "what a coincidence." No, just another great thing that God has done.
Also, I have been wanting to share about Mary Graham's lungs and pulmonology issues. For months and months I have asked you all to pray for MG's health, especially after learning about her right lung was partially collapsed. Well, her right brochus appeared to be bent and narrowed, however, it has much improved since her veptr placement. Our pulmonologist keeps saying he can't believe she hasn't had chronic pneumonia and bronchitis - he has asked me several times, and I have told him no, just colds and ear infections. So, all this to say, God HAS been protecting her, even through the midst of my frustrations with her colds and ear infections - He just waited until now to show me more clearly, more greatly.
You have been another great thing that God has given us. It has been hard to be so far away from family and friends, but through emails, texts, and the internet, we have felt so loved and lifted up. So, thank you.
Stay tuned....many more great things to share later and God will continue to show us more. Thanks for continuing to pray.
I apologize for being so late in updating today, we have been busy with MG and I have been pretty wiped out. Last night she did well, was awake a ton and I have gotten to hold her, which has been such a blessing. She is very uncomfortable and they are still working on her pain management. She is weak, which is to be expected and has yet to smile, but I know it will come. Today Mary Graham has been awake and looking so much more like herself. She has come so far in the last 24 hours. Little by little pumps and IVs have been disappearing and I've even heard the doctors mentioning when we may get discharged... possibly at the end of this week. We are going to remain in the ICU until discharge, which is perfectly fine with me. We are so thankful for this hospital and the doctors and nurses.
So, we ask you to continue to pray for her recovery and healing, which still has a ways to go. Pray for her pain and discomfort. She also is definitely more like herself because she cries when anyone messes with her.
We have witnessed many great things from the Lord and I have been mentally trying to look back over the last several days and remember. The sweet family, the Bishops that I met on the VEPTR facebook group months ago have been a huge blessing to us. Their 10 year old daughter, Katie, had her surgery the same day as MG and we got to spend some time with them at the RMH the night before. As some of you know, they then became our roomates up here in ICU. The mother and I have been able to support each other as our daughters go through all this. I was telling one of the nurses about how we met and ended up together in ICU and she said, "what a coincidence." No, just another great thing that God has done.
Also, I have been wanting to share about Mary Graham's lungs and pulmonology issues. For months and months I have asked you all to pray for MG's health, especially after learning about her right lung was partially collapsed. Well, her right brochus appeared to be bent and narrowed, however, it has much improved since her veptr placement. Our pulmonologist keeps saying he can't believe she hasn't had chronic pneumonia and bronchitis - he has asked me several times, and I have told him no, just colds and ear infections. So, all this to say, God HAS been protecting her, even through the midst of my frustrations with her colds and ear infections - He just waited until now to show me more clearly, more greatly.
You have been another great thing that God has given us. It has been hard to be so far away from family and friends, but through emails, texts, and the internet, we have felt so loved and lifted up. So, thank you.
Stay tuned....many more great things to share later and God will continue to show us more. Thanks for continuing to pray.
Sunday, March 18, 2012
Day 5~part 2
Mary Graham has had a really good day. Since they extubated her early this morning, she has slowly improved. Her heart rate and O2 is still good, she is still getting oxygen support. She is still breathing fast, they are watching that and doing lots of breathing treatments to help keep her lungs clear.
Overall, she seems to be improving and she has been awake a ton today. In fact, she is not on much pain medicine and seems to be tolerating that ok. And I have gotten to hold her in the rocking chair several times. It is so good to see her looking more like her sweet self. Next, I hope to get a smile sometime soon.
One sweet story, right after they extubated her and she was awake with eyes open and looking more like the MG we know, her sweet doctor (who had yet to see her this way) kept saying, "i'm in love with her and her big blue eyes, wish I could stay here all day." I much prefer this kind of attention from the doctors :)
Thank you for continuing to pray as Mary Graham heals. We praise God for all the steps she is making in her recovery.
Overall, she seems to be improving and she has been awake a ton today. In fact, she is not on much pain medicine and seems to be tolerating that ok. And I have gotten to hold her in the rocking chair several times. It is so good to see her looking more like her sweet self. Next, I hope to get a smile sometime soon.
One sweet story, right after they extubated her and she was awake with eyes open and looking more like the MG we know, her sweet doctor (who had yet to see her this way) kept saying, "i'm in love with her and her big blue eyes, wish I could stay here all day." I much prefer this kind of attention from the doctors :)
Thank you for continuing to pray as Mary Graham heals. We praise God for all the steps she is making in her recovery.
Day 5~Eyes open
Praise God for the steps she has made and we ask you not to cease praying for the 24 hours and even there after, each day is important. Pray for her lungs and breathing and for no other issues or complications to arise that would set her back. The Lord has heard our prayers and we are so grateful for those of you crying out to Him on her behalf. It has been awesome to see her eyes open.
Saturday, March 17, 2012
Day 4-Part 2
"And my God will meet all your needs according to the riches of his glory in Christ Jesus." Philippians 4:19
Mary Graham is still stable and on the lowest settings of her ventilator. The doctors had thought they would take her off the ventilator, however, her belly is still distended and tight and they want all the gas to come out before she is breathing on her own. So the plan is to wait another night. They don't want to cause any more problems went she comes of the ventilator and I'm all for that. She got a blood transfusion this morning after having her central line placed and that went smoothly. She has had lasiks to help get more of the fluid out and that seems to be helping also.I am thankful that she is not too aware of her pain. It is really sad when she cries though, a few times today she has gotten really upset, has tears rolling down her cheeks and opening her mouth, but no sound comes out because of the tube in her throat. These are times when she needs pain medicine and usually calms down quickly, but it's very hard to watch and not be able to hold her.
We are thankful for these little steps and ask you to pray for a good night and for her belly and fluids to come down. Also pray for no more complications, infections or lung issues.
Today I have been thinking about God's relationship to MG, how much he loves her, and how I'm always trying to get in the middle of that and fix things myself-what momma wouldn't be doing that? However, after remember this verse, I am trying to let go and trust that God know's Mary Graham's specific needs and praying that he is guiding the doctors, nurses and us to meet those needs. As always, thank you for praying.
Mary Graham is still stable and on the lowest settings of her ventilator. The doctors had thought they would take her off the ventilator, however, her belly is still distended and tight and they want all the gas to come out before she is breathing on her own. So the plan is to wait another night. They don't want to cause any more problems went she comes of the ventilator and I'm all for that. She got a blood transfusion this morning after having her central line placed and that went smoothly. She has had lasiks to help get more of the fluid out and that seems to be helping also.I am thankful that she is not too aware of her pain. It is really sad when she cries though, a few times today she has gotten really upset, has tears rolling down her cheeks and opening her mouth, but no sound comes out because of the tube in her throat. These are times when she needs pain medicine and usually calms down quickly, but it's very hard to watch and not be able to hold her.
We are thankful for these little steps and ask you to pray for a good night and for her belly and fluids to come down. Also pray for no more complications, infections or lung issues.
Today I have been thinking about God's relationship to MG, how much he loves her, and how I'm always trying to get in the middle of that and fix things myself-what momma wouldn't be doing that? However, after remember this verse, I am trying to let go and trust that God know's Mary Graham's specific needs and praying that he is guiding the doctors, nurses and us to meet those needs. As always, thank you for praying.
Day 4
MG had a restful night and was on the lowest settings on the ventilator this morning and her lungs are looking much better. We are thankful for these things. Please continue to pray for her. She is having a blood transfusion now and is still very swollen and has a distended belly because of gas built up. The concerns for the fluid and gas are that they can affect her lungs. Also, one of her IV lines failed so they put in a central line, which isn't uncommon. That procedure went fine, but she is still waking up from that and not quite back to her original ventilator settings.
Please pray for her gas and fluids to come down today. Also, they are talking about taking her off the ventilator maybe later today, please pray for no complications when that occurs. Pray for no infections and no more complications to arise. Pray for greater improvements and healing over the next 24 hours.
Thank you for standing in the gap for us, when we are often too exhausted to pray and just walking through this minute by minute. Our God is greater than all of this.
Please pray for her gas and fluids to come down today. Also, they are talking about taking her off the ventilator maybe later today, please pray for no complications when that occurs. Pray for no infections and no more complications to arise. Pray for greater improvements and healing over the next 24 hours.
Thank you for standing in the gap for us, when we are often too exhausted to pray and just walking through this minute by minute. Our God is greater than all of this.
Friday, March 16, 2012
Baby steps
Rock of Ages, when the day seems long
From this labor and this heartache I have come
The skies will wear out, but You remain the same
Rock of Ages, I praise Your name.
Mary Graham is doing well. She is still sedated and this morning was having some pain, the drs had taken her pains meds down a lot after she stopped breathing and was put on the ventilator. So she had some faster breathing and higher heart rate this morning, but now they have upped her pain meds a little and she has had a calm afternoon. She is getting more fluids out and I believe her color looks a little better too. And her right lung is improving. Praise God for the tiny baby steps she is taking in the right direction. Although she still has a long way to go. I am glad she is still sedated at this point because she is just sleeping through the pain. Our pulmonologist did another broncoscopy this afternoon and believes her bronchus looks a little better than before her veptr placement. There is talk of starting to wean her from the ventilator tomorrow, but they said they aren't in a hurry and just letting her drive the ship. Please pray for her pain, continued improvments, and patience as we wait for her to heal. Also for this awesome team of doctors and wisdom for them about when to take her off the ventilator.
The lyrics to the song, "Rock of Ages" is above. I have listened to this song over and over again. We do praise Him for being a Rock that is unchanging and walking us through these extremely long and darker days and I still believe there are brighter days ahead. We feel your prayers, so many prayers being poured out. There are many moments I want to share, when my brain is less foggy about God's hand even in small details. But one moment that I have see God's hand is through Lee.....I have to say that Lee has been a rock through all of this, and I believe it was a blessing that just I experienced when MG coded. He came just as they had gotten her more stable and has been able to be so strong. God is meeting our needs and we see that He truly is the God of all comfort.
We are very blessed to have such support and love from all of you and are always grateful for the continued prayers.
I love this picture of MG, taken just before her surgery
From this labor and this heartache I have come
The skies will wear out, but You remain the same
Rock of Ages, I praise Your name.
Mary Graham is doing well. She is still sedated and this morning was having some pain, the drs had taken her pains meds down a lot after she stopped breathing and was put on the ventilator. So she had some faster breathing and higher heart rate this morning, but now they have upped her pain meds a little and she has had a calm afternoon. She is getting more fluids out and I believe her color looks a little better too. And her right lung is improving. Praise God for the tiny baby steps she is taking in the right direction. Although she still has a long way to go. I am glad she is still sedated at this point because she is just sleeping through the pain. Our pulmonologist did another broncoscopy this afternoon and believes her bronchus looks a little better than before her veptr placement. There is talk of starting to wean her from the ventilator tomorrow, but they said they aren't in a hurry and just letting her drive the ship. Please pray for her pain, continued improvments, and patience as we wait for her to heal. Also for this awesome team of doctors and wisdom for them about when to take her off the ventilator.
The lyrics to the song, "Rock of Ages" is above. I have listened to this song over and over again. We do praise Him for being a Rock that is unchanging and walking us through these extremely long and darker days and I still believe there are brighter days ahead. We feel your prayers, so many prayers being poured out. There are many moments I want to share, when my brain is less foggy about God's hand even in small details. But one moment that I have see God's hand is through Lee.....I have to say that Lee has been a rock through all of this, and I believe it was a blessing that just I experienced when MG coded. He came just as they had gotten her more stable and has been able to be so strong. God is meeting our needs and we see that He truly is the God of all comfort.
We are very blessed to have such support and love from all of you and are always grateful for the continued prayers.
I love this picture of MG, taken just before her surgeryDay 3 Post Op
Wanted to just give a small update. Mary Graham had a restful night with no big issues. She has a slight elevated heart rate and respiratory rate, but overall she is doing well. She still has a ways to go, so we ask that you continue to pray for her to make improvements over the next 24 hours with no setbacks. They possibly want to take her off the ventilator tomorrow. Praise God that he has brought her this far from her horrible night and we know it takes time to see improvements in such a little girl. We are desperate to see her with her eyes open and smiling and ask that you pray for God to sustain us and give us strength as it has been hard. But we are choosing to trust in Him. We are so grateful so many are praying for her and our family.
17 The LORD your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love he will no longer rebuke you,
but will rejoice over you with singing.” Zephaniah 3:17
17 The LORD your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love he will no longer rebuke you,
but will rejoice over you with singing.” Zephaniah 3:17
Thursday, March 15, 2012
Continued prayers
Some of you already know that Mary Graham gave us quite a scare in the early morning hours. Because of her heavy sedation, her partially collapsed lungs and some built up secretions in her throat and chest, she stopped breathing and had to be placed on a ventilator. They were able to get her breathing again while trying to intubate her, but then she stopped again before they got the tube in place. Needless to say it was very scary to experience. The doctor explained that all of the things combined with her lungs and major surgery, a baby her age and size just can't do everything on her own. Now she is resting comfortably after being a bit agitated for a while. Her stats are good and she is stable and doing well considering all she went through. They did a partial blood transfusion, but she got a fever so they stopped for now and are constantly checking her labs. We aren't sure how long they will want to keep her on the ventilator, possibly a couple days, so she can rest and heal.
Please continue to lift her up. Pray for her to continue to do well, show improvement and have no more major set backs. Pray for the doctors and nurses to have wisdom in how to best treat her and help her heal.
Last night shook me for sure. Please pray for us to trust in the Great Physician and know for certain that He has her in His hands. Thank you so much for praying and loving us.
Please continue to lift her up. Pray for her to continue to do well, show improvement and have no more major set backs. Pray for the doctors and nurses to have wisdom in how to best treat her and help her heal.
Last night shook me for sure. Please pray for us to trust in the Great Physician and know for certain that He has her in His hands. Thank you so much for praying and loving us.
Wednesday, March 14, 2012
Yesterday and Today
Thank you for praying us through yesterday. I'm sorry it has taken me a while to update the blog. God's hands were in every detail. Mary Graham's surgery went smoothly, lasted about 5 hours total and Dr. Campbell is very pleased with the results so far. They were able to cut through two ribs, spreading them wider to given more room in her chest wall. Then he attached two veptr rods on either side of the spine from shoulder to pelvis. Her xrays already show improvement, her spine is straighter, ribs opened and lifted and she actually is one inch longer now. It really is amazing all they can do. We praise God for bringing her through the surgery and ask you to continue to pray for her.
Today is just post op day 1 and it has been a rollercoaster. Last night she was in a lot of pain, her heartrate was high and she started running fever, so it was pretty rough. They have better management of her pain, but she is labored in her breathing today, still running fever and her heartrate has been up and down. Her xrays are showing today that parts of her lungs are a little collapsed, so they just put her on a cpap machine to help her breathe fully and hoping to not have to put her on a ventilator. The ICU staff is wonderful and trying to find the best ways to treat her. As you can imagine her body has been through an enormous trauma....it's as if she has a whole new body and she is adjusting to that and trying to cope with the pain of the actual surgery. The doctors have said this is normal for everything she has been through and they are totally on top of things.
So, I feel relieved that the surgery is over and God carried her through. Today has felt like we have been here for 7 days. I ask you to pray for these next few days - I am constantly staring at the monitors and it can be unnerving for a mother. Pray for her lungs, her breathing, heart rate and overall healing. Pray for tonight and tomorrow to show much improvement.
I did get out of the hospital and went back to the RMH for a few hours today and the one verse I read was, "Be still and know that I am God." I felt like God was saying, "I've still got her, be still." Now that she is in sight it's easy to think I have more control, but I really don't. Pray we can rest in Him and feel his peace. He has been so faithful through it all.
We are in a shared room in the ICU, and it just happens to be with the sweet little 10 year old girl and her family that I met online. She had her veptr implants yesterday too and we had dinner with them at the RMH the night before the surgery. Just cool how God is in all the details.
Thank you for continuing to faithfully pray for Mary Graham. I have better access to a computer and will try and update more tomorrow.
Today is just post op day 1 and it has been a rollercoaster. Last night she was in a lot of pain, her heartrate was high and she started running fever, so it was pretty rough. They have better management of her pain, but she is labored in her breathing today, still running fever and her heartrate has been up and down. Her xrays are showing today that parts of her lungs are a little collapsed, so they just put her on a cpap machine to help her breathe fully and hoping to not have to put her on a ventilator. The ICU staff is wonderful and trying to find the best ways to treat her. As you can imagine her body has been through an enormous trauma....it's as if she has a whole new body and she is adjusting to that and trying to cope with the pain of the actual surgery. The doctors have said this is normal for everything she has been through and they are totally on top of things.
So, I feel relieved that the surgery is over and God carried her through. Today has felt like we have been here for 7 days. I ask you to pray for these next few days - I am constantly staring at the monitors and it can be unnerving for a mother. Pray for her lungs, her breathing, heart rate and overall healing. Pray for tonight and tomorrow to show much improvement.
I did get out of the hospital and went back to the RMH for a few hours today and the one verse I read was, "Be still and know that I am God." I felt like God was saying, "I've still got her, be still." Now that she is in sight it's easy to think I have more control, but I really don't. Pray we can rest in Him and feel his peace. He has been so faithful through it all.
We are in a shared room in the ICU, and it just happens to be with the sweet little 10 year old girl and her family that I met online. She had her veptr implants yesterday too and we had dinner with them at the RMH the night before the surgery. Just cool how God is in all the details.
Thank you for continuing to faithfully pray for Mary Graham. I have better access to a computer and will try and update more tomorrow.
Monday, March 12, 2012
Tomorrow and thank you
"They will help you carry the burden of the people so that you will not have to carry it alone" Numbers 11:17
Not sure that I have really ever read the book of Numbers, but I'm trying (like I said, trying) to read through the One Year Bible right now and Numbers is where I am. Last night I read of Moses telling God he just couldn't carry the burden of all the Israelites on his own anymore. So God took the Spirit of the burden off of Moses and put it on those around him. God didn't take away the burden all together, but brought people to help carry the burden. Our God is so full of compassion and mercy that when Moses cried out to him, He helped him and helped him through His people. This is the beautiful picture of what I am experiencing through each of you who are truly carrying this burden with us and all I can say is thank you. Your prayers mean so much and you are just helping us in so many ways. Thank you for the emails, text, cards, verses, phone calls, etc. They really are such a source of encouragement. The love of Christ is so evident.
We arrived yesterday, had smooth travel and the weather is great in Philly. Not too cold at all. The Ronald McDonanld House was full, so we stayed at the Sheraton last night. It's been nice and we walked to CHOP this morning. However, today we called RMH again and they have a room available for us. We are so thankful for this! Thanks to all those praying for this. They said it's a smaller room with a shared bathroom. But, we really will be at the hospital so much and I am planning to spend the night there anyway. In fact, in the ICU is divided into separate rooms and there is a place for parents to sleep in the room with their child and parents are allowed in 24/7 and then when MG is moved to the floor we will stay with her too.
So, today we met with Dr. Campbell again, anesthesia and did x-rays and bloodwork. MG was not so happy with the bloodwork, and then they called and we had to go back and redo some of it :( But now she is napping back in the hotel. She has been in great spirits the last two days, seems healthy and feeling good. She is definitely becoming more aware of what's going on around her and dislikes everyone dressed in scrubs. We spoke more with Dr. Campbell about tomorrow and he showed us the xrays, CT and MRI again. It's always hard to see these, her severe spinal curve and rigid back. But we know this is the best hope for her lungs and growth and we know it is the right time. He is hopeful that the veptr rods will expand MG's chest wall, but says sometimes we just don't know. Please pray for positive results from the veptr rods, for her lungs to be able to grow and strengthen despite her stiffness and help stablize or even improve her scoliosis. We are still so very grateful for Dr. Campbell and his team and what they do, she is in good hands.
I guess that is all for now, we will be at the hospital early in the morning and surgery will begin around 7:30 am. Please continue to pray for the surgery, no complications, her healing and recovery. Thank you gain for praying for us. A sweet friend said she pictured our family, friends and those praying for MG standing in a circle holding hands around the hospital praying throughout the day tomorrow...that is what I am going to picture also. "God is our refuge and strength, our ever present help in trouble" He hears our prayers and has been and will be faithful. I will update as soon as I can tomorrow.
Not sure that I have really ever read the book of Numbers, but I'm trying (like I said, trying) to read through the One Year Bible right now and Numbers is where I am. Last night I read of Moses telling God he just couldn't carry the burden of all the Israelites on his own anymore. So God took the Spirit of the burden off of Moses and put it on those around him. God didn't take away the burden all together, but brought people to help carry the burden. Our God is so full of compassion and mercy that when Moses cried out to him, He helped him and helped him through His people. This is the beautiful picture of what I am experiencing through each of you who are truly carrying this burden with us and all I can say is thank you. Your prayers mean so much and you are just helping us in so many ways. Thank you for the emails, text, cards, verses, phone calls, etc. They really are such a source of encouragement. The love of Christ is so evident.
We arrived yesterday, had smooth travel and the weather is great in Philly. Not too cold at all. The Ronald McDonanld House was full, so we stayed at the Sheraton last night. It's been nice and we walked to CHOP this morning. However, today we called RMH again and they have a room available for us. We are so thankful for this! Thanks to all those praying for this. They said it's a smaller room with a shared bathroom. But, we really will be at the hospital so much and I am planning to spend the night there anyway. In fact, in the ICU is divided into separate rooms and there is a place for parents to sleep in the room with their child and parents are allowed in 24/7 and then when MG is moved to the floor we will stay with her too.
So, today we met with Dr. Campbell again, anesthesia and did x-rays and bloodwork. MG was not so happy with the bloodwork, and then they called and we had to go back and redo some of it :( But now she is napping back in the hotel. She has been in great spirits the last two days, seems healthy and feeling good. She is definitely becoming more aware of what's going on around her and dislikes everyone dressed in scrubs. We spoke more with Dr. Campbell about tomorrow and he showed us the xrays, CT and MRI again. It's always hard to see these, her severe spinal curve and rigid back. But we know this is the best hope for her lungs and growth and we know it is the right time. He is hopeful that the veptr rods will expand MG's chest wall, but says sometimes we just don't know. Please pray for positive results from the veptr rods, for her lungs to be able to grow and strengthen despite her stiffness and help stablize or even improve her scoliosis. We are still so very grateful for Dr. Campbell and his team and what they do, she is in good hands.
I guess that is all for now, we will be at the hospital early in the morning and surgery will begin around 7:30 am. Please continue to pray for the surgery, no complications, her healing and recovery. Thank you gain for praying for us. A sweet friend said she pictured our family, friends and those praying for MG standing in a circle holding hands around the hospital praying throughout the day tomorrow...that is what I am going to picture also. "God is our refuge and strength, our ever present help in trouble" He hears our prayers and has been and will be faithful. I will update as soon as I can tomorrow.
Friday, March 9, 2012
Strength and Grace
Lee and I leave early tomorrow morning with MG, have appointments on Monday with Dr. Campbell and anesthesia. Then, the surgery will begin early Tuesday morning, I imagine the surgery will start around 7:30 am and last around 6-7 hours. This week I have just been planning for next week, making travel arrangements, and plans for Loftin and Lucy. Please pray for them while we are away and all the grandparents, family and friends helping take care of them. We are so thankful so many are helping us and have such an awesome support group. Also, we are hoping to stay at the Ronald McDonald House, however, it has been very full, and we won't know until we get there if there is a room available. They will be able to get us a low rate at a hotel until it becomes available. So, pray that this all works out. I imagine we will be "living" at the hospital most of the time and I know God will work out all these details.
Someone said to me the other day, "You seem so strong going through all of this." Really? Honestly, i'm weak, very weak at times, often gripped with fear and a pit in my stomach. But as Psalm 121 says, "My helps comes from the Lord." I have thought much about strength lately, probably because I have felt so helpless at times, and that is the only way we will get through this, with the kind of strength that can only come from God. In 2 Corinthians, "My grace is sufficient for you, My power is made perfect in weakness." These words have been at the forefront of my mind. God's strength is the only strength I have.....when I am weak, he is strong. He has gently led us through this year and right up to this point, step by step, never forsaking us. We have felt His strength, afterall, His strength is perfect. So, even when I'm weak, I am confident in these promises and know He wants His best for Mary Graham.
We are so grateful that God has brought us to this point. Thank you again for praying us through this, I know so many are going through trials and we thank you for being so faithful to pray for Mary Graham. God loves to hear the prayers of His people and pour out His compassion and mercy. Please pray for Mary Graham, the surgery, her doctors, and her recovery and all that's in between. We covet your prayers and thank you for loving our family. I will update, so check back soon.
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The LORD watches over you—
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The LORD will keep you from all harm—
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.
Someone said to me the other day, "You seem so strong going through all of this." Really? Honestly, i'm weak, very weak at times, often gripped with fear and a pit in my stomach. But as Psalm 121 says, "My helps comes from the Lord." I have thought much about strength lately, probably because I have felt so helpless at times, and that is the only way we will get through this, with the kind of strength that can only come from God. In 2 Corinthians, "My grace is sufficient for you, My power is made perfect in weakness." These words have been at the forefront of my mind. God's strength is the only strength I have.....when I am weak, he is strong. He has gently led us through this year and right up to this point, step by step, never forsaking us. We have felt His strength, afterall, His strength is perfect. So, even when I'm weak, I am confident in these promises and know He wants His best for Mary Graham.
We are so grateful that God has brought us to this point. Thank you again for praying us through this, I know so many are going through trials and we thank you for being so faithful to pray for Mary Graham. God loves to hear the prayers of His people and pour out His compassion and mercy. Please pray for Mary Graham, the surgery, her doctors, and her recovery and all that's in between. We covet your prayers and thank you for loving our family. I will update, so check back soon.
Psalm 121
1 I lift up my eyes to the mountains—where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The LORD watches over you—
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The LORD will keep you from all harm—
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.
Monday, March 5, 2012
Happy Birthday MG!
To my sweet Mary Graham on your first birthday.... You are "fearfully and wonderfully made" and God has taught our family more through your life and I know He has great plans for you. Although you will face some challenges, I pray that you will be a light and grow to love the Lord. Jesus loves you so much and I'm forever thankful that he chose Lee and I to be your parents, it is a privilege. You are a blessing from above!
Thursday, March 1, 2012
Day 4~Perspective
"You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Trust in the Lord forever, for the Lord, the Lord is the Rock eternal." Isaiah 26:3-4
Today was our last day of testing and meeting with doctors this week before Mary Graham will have her VEPTR surgery on March 13th. We are so relieved and thankful. I have prayed for peace and a greater perspective of what's to come with this major surgery MG is about to experience. This week has been full of so much, it's hard to even put it all in words....but even in the midst of the fear and uncertainty, today seems to have brought the most perspective and peace.
These details may be more than you wanted to know, but it helps me to get it all out and process it, and I appreciate you taking time to read.
First we met with Dr. Oscar Mayer (yes, that's right, his great grandfather is THE Oscar Mayer), our pulmonologist. His most concern is with MG's right lung. On the CT scan it showed to be partially collapsed and one of her brochus tubes appears bent (this is what connects the trachea to the lungs). She has some shallow, labored breathing, which we have already been aware of. He believes this is because her chest wall and spine are being so contorted because of her scoliosis. This was concerning to hear. Dr. Mayer wanted to do a bronchoscopy to get a better look. This would mean staying longer and having this procedure done Friday under anesthesia. However, they performed a pulmonary function test where MG was sedated and tested her lung capacity and breathing in and out and this was normal. He was actually a little surprised to see she did so well with her breathing and that she has not had pnemonia or bronchitis over the last several months with her lungs. God has totally protected MG and kept her healthy, he has heard our prayers. After that he decided to wait until the same day as her veptr surgery to do this procedure. We were so thankful for this and not having to stay longer, since we will be back in a little over a week anyway.
Next, we were able to meet with Dr. Campbell, our amazing orthopedist. It was all I could do to keep myself from running and hugging him and thanking him for doing what he does. He cares so much and is so compassionate. And if it weren't for his development of the veptr MG would not have any options. The veptrs will improve her quality of life-I'm forever thankful to God for sending us to him.
They worked us in today and we were able to ask lots of questions. He went through the steps of veptr surgery and the risks. Although there are great risks with this surgery, he said not doing the surgery would be a bigger risk. He will place two veptrs, one on each side of her spine (called bilateral), with 4 incisions. The veptr rods will open up her ribs and allow for her lungs, especially her right one, to develop and grow as she grows. Also, it should begin to slowly straighten her spine. Every four months we will return for adjustments of the rods. Dr. Campbell felt like she looked healthy and was just big enough to handle the surgery. I asked him his opinion (I ask this to just about every doctor we lay eyes on) about why Mary Graham has these abnormalities. Of course I know only God knows her the best and what her future holds, but it's hard not to seek out the answers myself. Guess it's my way of feeling a little in control. Dr. Campbell said children can have certain conditions or diseases, but they present very differently in each child. He said she was growing and a bright little girl and that is very encouraging to see.
So, after this week, I can begin to grasp what is to come with the veptr surgery and I am able to see this amazing team of doctors come together to find the best treatment plan for MG. The timing is also very important, so to be proactive and not allow her scoliosis and lungs worsen anymore. So many praises and things to be thankful for and the clarity we have been given.
Mary Graham will turn one on Sunday-it's hard to believe this year as I look back. There will be lots of challenges over the next several weeks, to say the least. God is here though, He has made our steps firm and brought us so far and I believe he will continue to, He has promised to. Don't think I've really been climbing that mountain I spoke of before this trip, I have been carried, and that has given me new perspective.
Thank you, thank you for continuing to pray for Mary Graham and our family. I've been so humbled to know so many are praying for her. We are so grateful for your love and support as this journey continues.
Today was our last day of testing and meeting with doctors this week before Mary Graham will have her VEPTR surgery on March 13th. We are so relieved and thankful. I have prayed for peace and a greater perspective of what's to come with this major surgery MG is about to experience. This week has been full of so much, it's hard to even put it all in words....but even in the midst of the fear and uncertainty, today seems to have brought the most perspective and peace.
These details may be more than you wanted to know, but it helps me to get it all out and process it, and I appreciate you taking time to read.
First we met with Dr. Oscar Mayer (yes, that's right, his great grandfather is THE Oscar Mayer), our pulmonologist. His most concern is with MG's right lung. On the CT scan it showed to be partially collapsed and one of her brochus tubes appears bent (this is what connects the trachea to the lungs). She has some shallow, labored breathing, which we have already been aware of. He believes this is because her chest wall and spine are being so contorted because of her scoliosis. This was concerning to hear. Dr. Mayer wanted to do a bronchoscopy to get a better look. This would mean staying longer and having this procedure done Friday under anesthesia. However, they performed a pulmonary function test where MG was sedated and tested her lung capacity and breathing in and out and this was normal. He was actually a little surprised to see she did so well with her breathing and that she has not had pnemonia or bronchitis over the last several months with her lungs. God has totally protected MG and kept her healthy, he has heard our prayers. After that he decided to wait until the same day as her veptr surgery to do this procedure. We were so thankful for this and not having to stay longer, since we will be back in a little over a week anyway.
Next, we were able to meet with Dr. Campbell, our amazing orthopedist. It was all I could do to keep myself from running and hugging him and thanking him for doing what he does. He cares so much and is so compassionate. And if it weren't for his development of the veptr MG would not have any options. The veptrs will improve her quality of life-I'm forever thankful to God for sending us to him.
They worked us in today and we were able to ask lots of questions. He went through the steps of veptr surgery and the risks. Although there are great risks with this surgery, he said not doing the surgery would be a bigger risk. He will place two veptrs, one on each side of her spine (called bilateral), with 4 incisions. The veptr rods will open up her ribs and allow for her lungs, especially her right one, to develop and grow as she grows. Also, it should begin to slowly straighten her spine. Every four months we will return for adjustments of the rods. Dr. Campbell felt like she looked healthy and was just big enough to handle the surgery. I asked him his opinion (I ask this to just about every doctor we lay eyes on) about why Mary Graham has these abnormalities. Of course I know only God knows her the best and what her future holds, but it's hard not to seek out the answers myself. Guess it's my way of feeling a little in control. Dr. Campbell said children can have certain conditions or diseases, but they present very differently in each child. He said she was growing and a bright little girl and that is very encouraging to see.
So, after this week, I can begin to grasp what is to come with the veptr surgery and I am able to see this amazing team of doctors come together to find the best treatment plan for MG. The timing is also very important, so to be proactive and not allow her scoliosis and lungs worsen anymore. So many praises and things to be thankful for and the clarity we have been given.
Mary Graham will turn one on Sunday-it's hard to believe this year as I look back. There will be lots of challenges over the next several weeks, to say the least. God is here though, He has made our steps firm and brought us so far and I believe he will continue to, He has promised to. Don't think I've really been climbing that mountain I spoke of before this trip, I have been carried, and that has given me new perspective.
Thank you, thank you for continuing to pray for Mary Graham and our family. I've been so humbled to know so many are praying for her. We are so grateful for your love and support as this journey continues.
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