Hi Friends!
Evie had her first injection yesterday morning... and it went great!!! No side effects, no allergic reactions, not a thing. Go Evie Jayne! And Lyla was relatively good most of the time for being in a small beige PICU room with no windows to the outside world... Go Lyla! John and I took turns sleeping at the hospital hotel, so one of us could stay with Eve, and Lyla could get some sleep, it was wonderful.
We start injections in the LIED transplant center tomorrow, and continue these on Monday, Wednesday, and Friday for the next 6 months. We are going to try to do them in the late afternoon so John can take Lyla home when he gets off of work at 3:30. Hopefully it will work our well, or we will re-evaluate.
THANK YOU for your prayers, I knew I was being prayed for when I woke up this morning curled up in a plastic recliner with my head on a wooden armrest, and was in a great mood! For someone who doesn't function well on little sleep, that is a direct result of the power of prayer. I have the best friends and family.
It's family time! Thanks for checking in, and I'll be sure to update soon (:
Love you all (:
AND THANK YOU Kristi and Dr. Lutz who have worked so hard to make this treatment work for us. You are amazing and wonderful.
Tuesday, December 8, 2009
Sunday, December 6, 2009
Packing for the hospital (:
Hi Friends (:
Well, we are starting treatment TOMORROW! It is finally here. I just realized today while visiting a friend that Evie is 11 weeks already... meaning we have been waiting for treatment to start for almost 2 months. I am ready, and nervous. We need prayers that she won't have an allergic reaction to the medication, and that her body tolerates and responds well. Evie is skipping the IV dose of the medication because of the medicine she is on for her seizures, which I am happy about. She will just get a shot, and be monitored.
We will be staying at the hospital overnight, and will be coming home Tuesday. We go back Wednesday and Friday for her 2nd and 3rd shots, and stay a few hours each time for monitoring. Then it's shots 3 times a week for the next 6 months.
I was telling friends recently that I haven't spent a lot of time going back and reading through old posts on this blog... which I should. I decided to check out "September" so I could re-post the verses we had in our hospital room:
Isaiah 40:28-31
28 Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure
the depths of his understanding.
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
31 But those who trust in the Lord
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
31 But those who trust in the Lord
will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Joshua 1:99
This is my command—
be strong and courageous!
Do not be afraid or discouraged.
For the Lord your God is with you
wherever you go.
Lamentations 3:22 - 23.
Because of the Lord's great love
we are not consumed,
for His compassions never fail.
They are new every morning;
great is Your faithfulness.
Revelation 3:20
Here I am!
I stand at the door and knock.
If anyone hears My voice
and opens the door,
I will come in and eat with him,
and he with Me.
wow. compared to what we were facing September 17, 2009 tomorrow is a gift from Heaven. Thank you Lord.
I don't think I'll have a computer at the hospital - I will post when I get back.
Love you friends (:
Wednesday, December 2, 2009
home again!
Hi Friends (:
Surgery went so well, no problems and Evie did great. We waited around for home health instructions, learned how to flush the port, ate dinner, and are going to bed.
Praise God that everything is great, and we didn't have to stay overnight!
THANK YOU FOR PRAYING! Love you!!!
Surgery went so well, no problems and Evie did great. We waited around for home health instructions, learned how to flush the port, ate dinner, and are going to bed.
Praise God that everything is great, and we didn't have to stay overnight!
THANK YOU FOR PRAYING! Love you!!!
Tuesday, December 1, 2009
Surgery Tomorrow...
Hi Friends,
Quick update before bed... Evie is going to have a "broviac catheter" placed tomorrow, Wednesday, at 2pm. It will provide the doctors a place to take blood samples from her during her treatment without poking and prodding in her arm. It is similar to a "port" but doesn't require surgery to take out... one round of general anesthesia is enough for me.
We go in at noon, surgery is at 2, and they will monitor her for at least a few hours afterward. She is scheduled overnight for observation, but they don't think we will have to stay.
Honestly, I am scared. We have had a lot of little procedures, but the sound of "surgery" makes me so nervous. It just sounds like a lot for a little 8 pound body.
Also, we had Evie's 2 month check up today, and she is in the 1% for weight, and 0% for height. They are going to put some more calories in her formula soon, so hopefully that will help her catch up.
Prayer requests: That God will provide the doctors with the ability to perfectly place Evie's catheter, the surgery will go smoothly, and most importantly that her body will react okay to the anesthesia, catheter, and surgery.
After her surgery tomorrow, she has her immunizations and a 24 hour urine sample Thursday, and 3 hours of tests and x-rays on Friday... gearing us up for starting treatment next week. I'll be honest, I've gotten awfully used to having her home, safe in my arms, so pray for me that I can hold it together the next few weeks.
Love you friends (:
Quick update before bed... Evie is going to have a "broviac catheter" placed tomorrow, Wednesday, at 2pm. It will provide the doctors a place to take blood samples from her during her treatment without poking and prodding in her arm. It is similar to a "port" but doesn't require surgery to take out... one round of general anesthesia is enough for me.
We go in at noon, surgery is at 2, and they will monitor her for at least a few hours afterward. She is scheduled overnight for observation, but they don't think we will have to stay.
Honestly, I am scared. We have had a lot of little procedures, but the sound of "surgery" makes me so nervous. It just sounds like a lot for a little 8 pound body.
Also, we had Evie's 2 month check up today, and she is in the 1% for weight, and 0% for height. They are going to put some more calories in her formula soon, so hopefully that will help her catch up.
Prayer requests: That God will provide the doctors with the ability to perfectly place Evie's catheter, the surgery will go smoothly, and most importantly that her body will react okay to the anesthesia, catheter, and surgery.
After her surgery tomorrow, she has her immunizations and a 24 hour urine sample Thursday, and 3 hours of tests and x-rays on Friday... gearing us up for starting treatment next week. I'll be honest, I've gotten awfully used to having her home, safe in my arms, so pray for me that I can hold it together the next few weeks.
Love you friends (:
Sunday, November 29, 2009
Update
Hi Friends (:
Hope you all had a good Thanksgiving, ours was quiet and very good. John has worked 7 of the last 7 days so I haven't updated since our last doctors appointment... but I have all of my Christmas shopping done, so horray for that!
We had our meeting with our geneticist and Kristi the coordinator last Tuesday, and the treatment has been put off another week. I am pretty... well really bummed about it, and I feel like I have been watching Evie like a hawk these last few days nervous that if things are continued to be put off her health will decline. For now, I am going to continue to pray pray pray over her little body, and so far things seem to be going okay. She has the occasional cough, and has been throwing up occasionally but it may just be normal baby stuff. I am getting weary of waiting, but I have been praying for God's perfect timing and I have to believe that this is it.
We have to decide this week if we want Evie to have a "port" placed for blood draws. It sounds like it will be in her chest, but we are going to meet with a surgeon to talk things over before we decide. I am not overly thrilled about any foreign objects being placed for any reason, but I know I need to be open to what is best for her... and being poked numerous times for blood draws sounds pretty miserable. There are risks and benefits to both, so it's not an obvious answer. We will also be doing her baseline kidney ultrasound and skeletal x-rays this week to get her ready for next Monday. Hopefully things will fall into place this time and we will get started on the 7th, that is the plan for now.
I was thinking a lot this week about what I am thankful for, and I am thankful that God has provided me with everything I need to get through any situation, and he continues to show me that every day. I have an unconditionally loving and accepting husband, a hilarious two year old to bring me joy, a beautiful blessing who has made it 10 weeks against the odds, a family and support system that goes above and beyond, and an amazing God who wraps his arms around me through it all. The thousands of beautiful things around me are just icing on the cake.
Love you friends, sorry the update is so long overdue. Hopefully I'll have more news this week.
Lindsey
Hope you all had a good Thanksgiving, ours was quiet and very good. John has worked 7 of the last 7 days so I haven't updated since our last doctors appointment... but I have all of my Christmas shopping done, so horray for that!
We had our meeting with our geneticist and Kristi the coordinator last Tuesday, and the treatment has been put off another week. I am pretty... well really bummed about it, and I feel like I have been watching Evie like a hawk these last few days nervous that if things are continued to be put off her health will decline. For now, I am going to continue to pray pray pray over her little body, and so far things seem to be going okay. She has the occasional cough, and has been throwing up occasionally but it may just be normal baby stuff. I am getting weary of waiting, but I have been praying for God's perfect timing and I have to believe that this is it.
We have to decide this week if we want Evie to have a "port" placed for blood draws. It sounds like it will be in her chest, but we are going to meet with a surgeon to talk things over before we decide. I am not overly thrilled about any foreign objects being placed for any reason, but I know I need to be open to what is best for her... and being poked numerous times for blood draws sounds pretty miserable. There are risks and benefits to both, so it's not an obvious answer. We will also be doing her baseline kidney ultrasound and skeletal x-rays this week to get her ready for next Monday. Hopefully things will fall into place this time and we will get started on the 7th, that is the plan for now.
I was thinking a lot this week about what I am thankful for, and I am thankful that God has provided me with everything I need to get through any situation, and he continues to show me that every day. I have an unconditionally loving and accepting husband, a hilarious two year old to bring me joy, a beautiful blessing who has made it 10 weeks against the odds, a family and support system that goes above and beyond, and an amazing God who wraps his arms around me through it all. The thousands of beautiful things around me are just icing on the cake.
Love you friends, sorry the update is so long overdue. Hopefully I'll have more news this week.
Lindsey
Thursday, November 19, 2009
Wow, two months!
Happy 2 month birthday Evie Jayne!!! I love you beautiful girl.
Well the "signing, sealing, and delivering" of the contract took a little longer than expected, and is setting us back a week. We didn't meet today to do Evie's baseline visit, but are meeting next Tuesday.
The GREAT news is, as of today, everything IS signed. The drug company has signed, the IRB has approved, so we are GO!
I am slightly disappointed that we aren't starting treatment next week, but I am so pleased with the way the doctors have carefully combed through the study protocol to make sure Evie isn't in any danger. It is so much more important to me that we have carefully thought through Evie's treatment before rushing into anything, and she continues to do remarkably well, Praise God for that answered prayer!
I found an article about the study drug Evie will be starting, if you are interested you can check out: http://enobia.com/press_releases-32.html
As I was browsing the website I discovered that the first infant to try the treatment started in October 2008... barely over a year ago. I am just blown away at how blessed we are that this treatment is available for Evie. Totally... blown... away.
Lastly, my Grandma Maurstad passed away one year ago today. Just wanted to say I miss you grandma. I sent you all of my email updates during my pregnancy, I know you were rooting for us (: I love you so much, I'm sure you are playing more beautifully than ever. Wish you were here.
Love you friends (:
Well the "signing, sealing, and delivering" of the contract took a little longer than expected, and is setting us back a week. We didn't meet today to do Evie's baseline visit, but are meeting next Tuesday.
The GREAT news is, as of today, everything IS signed. The drug company has signed, the IRB has approved, so we are GO!
I am slightly disappointed that we aren't starting treatment next week, but I am so pleased with the way the doctors have carefully combed through the study protocol to make sure Evie isn't in any danger. It is so much more important to me that we have carefully thought through Evie's treatment before rushing into anything, and she continues to do remarkably well, Praise God for that answered prayer!
I found an article about the study drug Evie will be starting, if you are interested you can check out: http://enobia.com/press_releases-32.html
As I was browsing the website I discovered that the first infant to try the treatment started in October 2008... barely over a year ago. I am just blown away at how blessed we are that this treatment is available for Evie. Totally... blown... away.
Lastly, my Grandma Maurstad passed away one year ago today. Just wanted to say I miss you grandma. I sent you all of my email updates during my pregnancy, I know you were rooting for us (: I love you so much, I'm sure you are playing more beautifully than ever. Wish you were here.
Love you friends (:
Sunday, November 15, 2009
The Plans....
Hi Friends!
I spoke with Kristi, our enzyme replacement coordinator this past week, and a tentative plan for Evie's treatment has been set! Praise God!
If all documents are signed, sealed, and delivered, we will do our baseline/screening visit for Evie on Thursday. You can pray that God will grant me the mental capacity to understand all of the numbers, measurements, dates and scheduling for Evie's treatment before we sign on the dotted line. Then she will go into the hospital Monday the 23rd for her initial IV dose of medication, and we may only have to stay for 2 or 3 days if all goes well! This means home for Thanksgiving, back Friday for some labs, and we will start her injections (shots) the following Monday. She will have these 3 times a week for the next 6 months, and tests scattered throughout the weeks to monitor her results. I am bursting with gratitude for the people who have worked so hard to get this started.
On a deeper note (scary, I know!)... I have had one of those days... Looking back on how God has touched my heart in the past few weeks.
It started at women's Bible study two Thursdays ago, when we were reading about how Jesus told Peter that he, Peter, would be crucified.
Then this past week we decided to take the kids to Coco Key when John got off of work. We had to hurry and get the girls out the door because you can only get in free before 5pm! So we hurriedly drove across town only to find out that it was a "black out day" and we couldn't get in. I was so frustrated! When we left we took 72nd street to Center to head west and get something to eat. As we were driving down Center street tears started streaming down my face. I hadn't driven down that part of Center street since I was pregnant with Evie... and we had visited the cemetary on 50th and Center to get familiar with where we would lay her to rest.
Jesus had told Peter how he would die. God knew before he sent Jesus to this earth, how Jesus would die. And in a distant comparison, when I was pregnant, we were told how Evie would die.
When people ask me how we survived the last few months of our pregnancy, I can only describe it as "one day at a time." The truth is, I KNOW death is not the end of Evie's life. We went to that cemetary half a dozen times to get familiar with Evie's doorway to the place God is preparing for her. To get comfortable with the symbolic place where we could go "visit" her. Where we could sit by her grave and weep because of how much we love and miss her. Was it painful? YES. Is it hard to consider even now??? It rips my heart out. But Jesus said "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." God has not only prepared a place for Evie, but thankfully also for me, her mom, so I can hug, talk to, and walk the streets of Heaven with her for all of eternity! I hold firm to that truth, thank you Lord!
Now that we have had Evie home for 8 weeks, I am sitting with a towel... not a kleenex... as I did so many times when I was pregnant, thinking about that time when we thought we were going to lose her. And now instead of dropping to my knees and praying for a miracle, I usually drop face down on the floor thanking God for Evie, and for the 8 weeks of joy she has brought to our lives. We will all obviously face death someday. I am so glad I can face it knowing I will be reunited with my children in Heaven, and be incredibly thankful for the time we have together now.
Our dear friend and Pastor is doing a 4 week sermon series titled "It Would Take a Miracle." After what we have experienced the past several months, I just can't wait. If you are looking to find a church, or a place to hear about God's love for you, I personally invite you to come. The series is starting in December (Dec 6th) at Brookside Church. John, Lyla, I, and our BEAUTIFUL miracle will be there (: Make sure you come say hi!
Love you friends, I'll be back when we have more news and let you know exactly when Evie's treatment starts so you can be praying for her.
Bye for now!
I spoke with Kristi, our enzyme replacement coordinator this past week, and a tentative plan for Evie's treatment has been set! Praise God!
If all documents are signed, sealed, and delivered, we will do our baseline/screening visit for Evie on Thursday. You can pray that God will grant me the mental capacity to understand all of the numbers, measurements, dates and scheduling for Evie's treatment before we sign on the dotted line. Then she will go into the hospital Monday the 23rd for her initial IV dose of medication, and we may only have to stay for 2 or 3 days if all goes well! This means home for Thanksgiving, back Friday for some labs, and we will start her injections (shots) the following Monday. She will have these 3 times a week for the next 6 months, and tests scattered throughout the weeks to monitor her results. I am bursting with gratitude for the people who have worked so hard to get this started.
On a deeper note (scary, I know!)... I have had one of those days... Looking back on how God has touched my heart in the past few weeks.
It started at women's Bible study two Thursdays ago, when we were reading about how Jesus told Peter that he, Peter, would be crucified.
Then this past week we decided to take the kids to Coco Key when John got off of work. We had to hurry and get the girls out the door because you can only get in free before 5pm! So we hurriedly drove across town only to find out that it was a "black out day" and we couldn't get in. I was so frustrated! When we left we took 72nd street to Center to head west and get something to eat. As we were driving down Center street tears started streaming down my face. I hadn't driven down that part of Center street since I was pregnant with Evie... and we had visited the cemetary on 50th and Center to get familiar with where we would lay her to rest.
Jesus had told Peter how he would die. God knew before he sent Jesus to this earth, how Jesus would die. And in a distant comparison, when I was pregnant, we were told how Evie would die.
When people ask me how we survived the last few months of our pregnancy, I can only describe it as "one day at a time." The truth is, I KNOW death is not the end of Evie's life. We went to that cemetary half a dozen times to get familiar with Evie's doorway to the place God is preparing for her. To get comfortable with the symbolic place where we could go "visit" her. Where we could sit by her grave and weep because of how much we love and miss her. Was it painful? YES. Is it hard to consider even now??? It rips my heart out. But Jesus said "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." God has not only prepared a place for Evie, but thankfully also for me, her mom, so I can hug, talk to, and walk the streets of Heaven with her for all of eternity! I hold firm to that truth, thank you Lord!
Now that we have had Evie home for 8 weeks, I am sitting with a towel... not a kleenex... as I did so many times when I was pregnant, thinking about that time when we thought we were going to lose her. And now instead of dropping to my knees and praying for a miracle, I usually drop face down on the floor thanking God for Evie, and for the 8 weeks of joy she has brought to our lives. We will all obviously face death someday. I am so glad I can face it knowing I will be reunited with my children in Heaven, and be incredibly thankful for the time we have together now.
Our dear friend and Pastor is doing a 4 week sermon series titled "It Would Take a Miracle." After what we have experienced the past several months, I just can't wait. If you are looking to find a church, or a place to hear about God's love for you, I personally invite you to come. The series is starting in December (Dec 6th) at Brookside Church. John, Lyla, I, and our BEAUTIFUL miracle will be there (: Make sure you come say hi!
Love you friends, I'll be back when we have more news and let you know exactly when Evie's treatment starts so you can be praying for her.
Bye for now!
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