We have had an eventful morning already today to say the least! This morning I thought it was "business as usual", I got up walked down the hall for the sonogram. It started as normal. Dr. Weiss and I were conversing about the date they have set for my delivery (which was/is July 9th) and he started the sonogram. He stopped a little longer at Holt's heart and said "humm" Which if you have been in my shoes "humm" is never a good thing. It's enough to make you hold your breath until the thoughts come out of the doctor's mouth. He said that he is seeing a little more fluid build up around the heart then he did on Tuesday. Of course, I knew what that ment because I have been told that as soon as they see the smallest trace of fluid build up it's delivery time. He measured it and said that the fluid has been 2 mm and today it's measuring 5 mm. He quickly scanned over the rest of the body and told me he was going to talk with Dr. Thomas (cardiologist) about this and we might be delivering today. Not what I was expecting at all! And of all times for this to happen it had to be on the one weekend when Josh decided to stay at home last night and come later this morning.
So off down the hall I went, while talking I passed the nurse station and my sweet nurse got the short version of what was going on and walked with me to my room. I was told not to eat or drink anything until we know more (which is one of the worst things you can say to a pregnant gal!) I was hooked up to the monitor and with in 1 minute of being back in my room, the on call OB was standing at the end of my bed. She started to tell me what today would look like if we had to deliver. She said she would come back as soon as she knew anything and let me know where we go from here. About 20 minutes later Dr. Rogers was back in the room and said that we aren't delivering today. She said that the cardiologist were not shocked by this news at all. Which was a weird relief to hear. She said that they are going to come and talk to me this afternoon and do an Echo on Monday to reasses. She then proceeded to tell me that there has been some change from the sono on Tuesday and Echo on Wednsday but they don't see enough stress on Holt to devliver him just yet. Of course this could change at any minute. They are placing me on the monitors 3 times a day for the weekend instead of my normal 2 times. Dr. Rogers said they are going to watch the patterns of the heart and if they see a change in his normal patter then they will do a sonogram and delivery could possibly be back on the table again. But for now we just sit and enjoy the weekend.
I am excited about my shower this afternoon, but have decided that maybe showers aren't the best thing for me to plan. Every shower we have had planned some event happens that threatens the postponing of it. But not today! We are going to enjoy the afternoon! I can't wait! It will be such a nice break from reality, especially after such an eventful day like today.
I'm sure you're thinking where do we go from here... well my friend we are in the "waiting" period again. We could delivery on Monday, next week sometime or Lord willing we might just actually get to the scheduled date of Monday July 9th. I will try to do my best to either update my blog or facebook with what going on. The good news is I am 37 weeks which they consider full term and he weighs over 6 pounds now. So if we had to deliver this weekend or next week, of course it would not be ideal but we are in the "safe zone" and the doctors are very pleased that we have gotten to this point to allow him to grow!
Through this whole situation I have come to expect the unexpected. You really never know what tomorrow hold! I am just glad that we serve a God who holds our tomorrows in his hands, and "shocked" or "unexpected" are not in his vocabulary. It helps me face all our tomorrows with confidence!
I want to end my post today with a reminder that a dear and wonderful friend encouraged me with today.
"Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am." Phil. 4:13
It's a verse that is so often quoted but it's the Message version and I just love it.- I can make it through ANYTHING in the One who makes me who I am. What a great reminder for my todays! The one who makes me who I am is walking with us through this all.
Please be in pray for our future- we might be meeting our son sooner then anticipated. We will keep you posted!
Consider it pure joy, my brother and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. James 1: 2&3
Friday, June 29, 2012
Monday, June 25, 2012
Sometimes, It's Just Not About Me!
Another week has come and gone! I feel like I have a count down in my head, of course we don't have an exact date of delivery yet- so it's kind of a count down to nowhere but I feel like we are on the home stretch. I am 37 weeks this week and they are talking about delivering me somewhere around 39. So it's just a round the corner. Last weeks scans were great. We are still stable. The echo is still showing the same improvement from a couple weeks ago. The cardiologist that came by last week seemed positive. They are liking what they are seeing on the echos. He told me that at 36 weeks they are considering me full term but they want him to get as big as he can so they are waiting until 39 weeks to deliever. Also studies have shown that delivering before 39 weeks there is a higher risk of learning disabilities and they want to give him the best chance possible for a "normal" life. I agree, heart disease is enough for one little boy. It's conforting to know that if he was delievered before planned we are in the "safe zone". The sonograms are still looking good. He is weighing 6 pounds and 1 ounce. We are fully expecting him to be 7-7.5 pounds! I was go glad to hear that he is a good size. I know that this good report is only because God is answering our prayers. So thank you for your continued prayer over our family.
As the day draws nearer to meeting our little boy I can help but have mixed emotions. I am so excited to at some point to meet and hold him but I know before we can just be somewhat back to normal living we have a long road ahead. With everyday that passes I become a little more homesick then the day before. I love seeing my family on the weekends and I am so excited to see some of my friends on Friday for my shower, but there is just something about home, ya know. I'm kind of starting to forget what my house even looks like ;) I know that right now I am extra hormonal so add that to the mix and you've got a very strange reciepe for homesickness, oh yes and of course sleep depravision. I've kinda given up on the whole concept of sleep- the nurses on the floor here are so wonderful in letting me "sleep in" as much as I can. Instead of checking on me before 8 they are now waiting for me to call them when I am awake. I am very grateful for that because the best sleep I get these days happens in the morning.
Please don't get me wrong about this post- I am so happy to be where I am (as strange as that sounds) because I know we are getting the very very best care and there is a plan for after his birth. And for that I would sit here for a 1000 weeks if that's what it took to make sure he is safe and gets the very best care possible. It just doesn't make the waiting any easier. Actually, yesterday as I was reflecting over the past couple of weeks I found myself thanking the Lord for this situation. I know what you're thinking- really? you're thankful? and yes, I have come to that place in this journey where I am at peace with everything, and I know no matter what the outcome I will never be forgotten or unloved. If anything I feel like my walk with the Lord has become stronger. I mean how can it not? I know that through all of this the Lord has and will continure to be glorified and I will walk through whatever he asks because I know he has promised he will never leave us nor forsake us.
I have a story that I was given in yr. high or high school that I carry in my bible and I want to share it with you- I have been reminded of it several times and I find it very fitting for today! I'll give you the short version.
There was a young girl who went rock climbing and when she got to the top of the mountain she lost her contact. After a while of looking for it she sat down on a rock and began to wonder how she is ever going to get down from the top of the mountain. She felt the panic rising in her, so she began to pray. She prayed for calm and that she would find her contact lens. While she was praying she thought of the verse "The eyes of the Lord run to and fro throughout the whole earth" and she continued in prayer " Lord, you can see all these mountains. You know every stone and leaf and You know exactly where my contact lens is. Please help me."
After sitting for a while she got up and slowly made her way down to the bottom of the mountain. On her way down she passed other climbers and one of them yelled "Hey, did anyone loose a contact lens?"
Well, that would be startling enough. But you know why the climber saw the contact lens? An ant was moving slowly across a twing on the face of the rock, carrying it!
The story doesn’t end there.
This girl's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption:
I am grateful that we have many friends who are walking through this journey with us. I cannot say thank you enough for your prayers and encouragement and walking with me down this road. Please continue to pray for healing but also will you join with me in praying for wisdom for Josh and myself? We are taking on a new role that we have no clue how to do but we are praying we can be the best parents to our sweet boy.
Also, the doctors have started "preparing" us for what to expect when he delievers. Please pray for our hearts, we have been told the first 48 hours are going to be the hardest. There will be a lot going on and we have been told to expect him to do good one mintue and not good the next and this rollercoaster ride will continue for the first 48 hours until they get him stable. I am already hormonal enough, so I can only imagine what emotions we will feel in the days to come. Also pray that his heart will be strong enough to wait atleast 24 hours after birth before they need to do the heart cath. I could go on and on about things to pray about but we'll start with these. Don't worry I've got atleast 3 weeks of blogging left- so there will be plenty of time for more request!
Our God is a migthy God and I know he still moves mountains!
Thank you for your prayer!
As the day draws nearer to meeting our little boy I can help but have mixed emotions. I am so excited to at some point to meet and hold him but I know before we can just be somewhat back to normal living we have a long road ahead. With everyday that passes I become a little more homesick then the day before. I love seeing my family on the weekends and I am so excited to see some of my friends on Friday for my shower, but there is just something about home, ya know. I'm kind of starting to forget what my house even looks like ;) I know that right now I am extra hormonal so add that to the mix and you've got a very strange reciepe for homesickness, oh yes and of course sleep depravision. I've kinda given up on the whole concept of sleep- the nurses on the floor here are so wonderful in letting me "sleep in" as much as I can. Instead of checking on me before 8 they are now waiting for me to call them when I am awake. I am very grateful for that because the best sleep I get these days happens in the morning.
Please don't get me wrong about this post- I am so happy to be where I am (as strange as that sounds) because I know we are getting the very very best care and there is a plan for after his birth. And for that I would sit here for a 1000 weeks if that's what it took to make sure he is safe and gets the very best care possible. It just doesn't make the waiting any easier. Actually, yesterday as I was reflecting over the past couple of weeks I found myself thanking the Lord for this situation. I know what you're thinking- really? you're thankful? and yes, I have come to that place in this journey where I am at peace with everything, and I know no matter what the outcome I will never be forgotten or unloved. If anything I feel like my walk with the Lord has become stronger. I mean how can it not? I know that through all of this the Lord has and will continure to be glorified and I will walk through whatever he asks because I know he has promised he will never leave us nor forsake us.
I have a story that I was given in yr. high or high school that I carry in my bible and I want to share it with you- I have been reminded of it several times and I find it very fitting for today! I'll give you the short version.
There was a young girl who went rock climbing and when she got to the top of the mountain she lost her contact. After a while of looking for it she sat down on a rock and began to wonder how she is ever going to get down from the top of the mountain. She felt the panic rising in her, so she began to pray. She prayed for calm and that she would find her contact lens. While she was praying she thought of the verse "The eyes of the Lord run to and fro throughout the whole earth" and she continued in prayer " Lord, you can see all these mountains. You know every stone and leaf and You know exactly where my contact lens is. Please help me."
After sitting for a while she got up and slowly made her way down to the bottom of the mountain. On her way down she passed other climbers and one of them yelled "Hey, did anyone loose a contact lens?"
Well, that would be startling enough. But you know why the climber saw the contact lens? An ant was moving slowly across a twing on the face of the rock, carrying it!
The story doesn’t end there.
This girl's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption:
I love this story because it reminds me that sometimes it's not about me! In my little bubble I often think that life is about me, I can be so selfminded! I can identify with the ant. Many times I have prayed this prayer the ant prayed. "Lord, I don't know why you want us to carry this thing, I don't understand why you choose us to deal with heart disease. But, if this is what You want for us to do we'll carry it for You." Sometimes we are asked to "carry" things not for ourselves but for the sake of others. And that's what I keep reminding myself, sometimes it's just not about me and for all other times, I am remined of the verse that says " Give all your worries to Him because He cares for you" . (1 Peter 5:7)
I am grateful that we have many friends who are walking through this journey with us. I cannot say thank you enough for your prayers and encouragement and walking with me down this road. Please continue to pray for healing but also will you join with me in praying for wisdom for Josh and myself? We are taking on a new role that we have no clue how to do but we are praying we can be the best parents to our sweet boy.
Also, the doctors have started "preparing" us for what to expect when he delievers. Please pray for our hearts, we have been told the first 48 hours are going to be the hardest. There will be a lot going on and we have been told to expect him to do good one mintue and not good the next and this rollercoaster ride will continue for the first 48 hours until they get him stable. I am already hormonal enough, so I can only imagine what emotions we will feel in the days to come. Also pray that his heart will be strong enough to wait atleast 24 hours after birth before they need to do the heart cath. I could go on and on about things to pray about but we'll start with these. Don't worry I've got atleast 3 weeks of blogging left- so there will be plenty of time for more request!
Our God is a migthy God and I know he still moves mountains!
Thank you for your prayer!
Tuesday, June 19, 2012
Shower Time!
I have some very sweet friends who want to throw me a little shower while I'm here so I can have at least one "normal" experience before our sweet baby is born. They asked me to post this on the blog.
I am so blessed to have such wonderful friends!!
\
Monday, June 18, 2012
Another week, another lesson.
Another week has come and gone. As I sit at the beginning of a new week, I have mixed emotions. First, we'll get through the good stuff. Last weeks scans were all good reports.The echo is still stable and sonograms are looking good. Dr. Weiss told me again on Friday "I'm no cardiologist but his heart is looking better." I agree with him, I by no means have any knowledge of the heart but from what I've seen these last 5 weeks it looks like a better functioning heart. Either way, Holt is doing good! I know that these good reports come only by the grace of God and I believe that he is sustaining and keeping my baby safe. Thank you Jesus!
The more I understand about the heart the more I realize how complex and wonderful it is. Every time I meet with a doctor they re-explain the function of the heart and how it pumps the blood. I am amazed when I think of the creator that created this organ. One of the first thing that my sweet sister-in-law helped me with when I was settling in here was making poster with scripture to hang on the walls. I want to share with you one of them.
Psalm 139:13-17.
"For you created my inmost being: you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God!"
This situation has given me a new perspective of these verses. We really are fearfully and wonderfully made. Every part of our body, every organ, every system, every beating, moving part of our body from head to toe was no accident. We were created from nothing. A brilliant mind spoke us into being. And that my friend makes me speechless. Speechless, that someone that big and wonderful could love us. Despite are human-ness. And let me tell you I am being very human today.
Even with these good reports somehow today I feel like I've got the weight of the world on my shoulders. Monday's are one of the hardest days for me. Don't get me wrong we had a wonderful weekend. Josh came down Thursday evening after work. It's good to see him. One of the hardest things right now is the distance. I have told him that I will never be a commuter couple or a work widow ever again. I know this is only temporary but it doesn't make it any easier. My parents came over on Saturday to spend the day with us. We had a wonderful time playing games and celebrating my dad's birthday.
Downstairs there is a bakery, Josh and I got him a cake. It's was wonderful!
We also had another visitor. Her name is Zoe. She is a therapy dog. It's fun to have such a cute visitor! I enjoyed spending time with her. I am a huge dog person and I am missing my dogs a lot lately. So to have sometime with a dog is well, therapy.
I think my issue is I am just home sick. I haven't seen my house in over a month. That's a long time, especially when I am starting to "nest". All I can do is think about what I would be doing if I were home and how much we do not have for this baby when he comes home. Due to this unforeseen situation I had to post pone my baby showers. Which made me sad because I was so looking forward to those. Please don't get me wrong, I would much rather be here knowing and having a plan to help Holt then being surprised after he is born. I still can't help but think, how after we leave the hospital is everything going to come together? Please also understand that I am writing only to document my thoughts. I know that someday I will look back on this and laugh when I think how silly I was to worry about little things like diapers or bottles. I would give those things up a thousand times over to have a healthy baby. It's just hard sitting here with nothing but time on my hands to think, and that's where I get in the most trouble. If I could just shut my brain off for a minute and listen to what I really know. The all of my need have been and will continue to be met, and I know the same for my son- God will provide for us.
The other night I woke up at 4:30 again and my mind went racing. I've decided this is when God has my undivided attention and we do a lot of dealing at this time. I started thinking "God how is all this going to work out? I don't have nothing for this child! Then my simple mind started listing everything that we don't have: a diaper bag, bottles, diapers, blankets, a monitor (how will I know if he's ok?? cause walking in the room and looking the "old fashion" way would of course never due! ;) ) I have no swing, how every will I put the kid down? How can a baby ever survive without a swing! The nursery is not finished- goodness the bedding is still in the bag! How is the world are we ever going to survive after we bring him home!!!" Let me tell you the answer I received.
This is a lesson that I have had to relearn. You would think that I would have gotten it by now. I KNOW with everything in me that God WILL provide everything we need, because He promises. I just can't get my brain up to speed with my heart!
In the middle of my silly prayer I heard this whispered to me in the most loving way-
"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you a hope and a future." (Jeremiah 29:11 ) Lauren, Just trust me, I've got it all under control!
I was then reminded that I had to learn this lesson just a few short months ago. You see getting pregnant was not the easiest thing for Josh and me. Not a lot of people know this but I had an appointment with an infertility doctor here in Dallas. I thought that was the road we were heading down. A couple days before the appointment I was filling out all the paper work and stopped in the middle of it and decided I was not ready to give up on God, so I cancelled the appointment. Josh and I decided to give it until the end of the year and if in January we still weren't pregnant I would reschedule the appointment. The next day as I was driving to work, I was discouraged. This was September and we had been trying since January and both were just frustrated. (I know what you're thinking, that's not a long time- but there's more to the story that I'll spare you the details) While driving and letting God know how frustrated I was he ever so gently reminded of this verse.
I felt like God was grabbing my cheeks looking me straight in the eyes and said "You believe I know the plans for I have for you but would you believe this for your unborn child? Would you believe that I KNOW the plans I have for him. For his future, one filled with hope and not harm. A plan to prosper him. I know when the exact egg will drop to be fertilized. I know the exact day you will find out about your child. I know the exact day when he will be born- it's just not time yet. I know what your future holds as a family. Will you not trust me? I know!" How can you argue with that?
So I placed our future in His hands and began praying that he would do "immeasurably more then all we can ask or imagine" (Eph 3:20) That my friend he did, I found out on November 19th that we were blessed with a child. Yes, God answers prayers! He answered our prayer, but not in the way that I had planned. He did it in his perfect timing and with his perfect plan.
Why is it that I know all this but there are days when I feel like my world is spinning out of control. For some reason lately I have felt the need to be prepared (I blame the hormones) and I am also learning that through this whole situation I have no way to be prepared. The "normal" is no longer our "normal". "Normal" for us has been forever changed. I am slowly learning that there really is no other way then trust in the Lord to help us find our new "normal". We'll get there eventually, it's a one day at a time process. I think that's why we are to daily "walk" with the Lord. I'm glad it's a walk, cause running gets you no where fast, except for out of breath. I am so thankful for the Lord's patience with me. And that he will teach me the same lesson over and over and over again. Hopefully one day we can move on to a new lesson! But until then, we are taking it one day at a time.
Before I end this post today I wanted to share with you some pictures my wonderful mother took of us this weekend. Another thing that I am having to deal with is not having maternity pictures taken. My passion is photography and I love a good picture. But this is part of our new "normal"- pictures taken from an iPhone at the hospital. On the other hand I am so grateful that I have a few good pictures to remind me of this time. Now that I have rambled enough here are a few pictures.
I will forever treasure these memories because they will forever remind me of what a Savior we serve. Yes, the waiting is hard and never fun. But God has already preformed so many miracles in our lives and I know he's not yet finished with our family. Thank you for your continued prayers and encouragement. I cannot express to you what they mean to us.
The more I understand about the heart the more I realize how complex and wonderful it is. Every time I meet with a doctor they re-explain the function of the heart and how it pumps the blood. I am amazed when I think of the creator that created this organ. One of the first thing that my sweet sister-in-law helped me with when I was settling in here was making poster with scripture to hang on the walls. I want to share with you one of them.
Psalm 139:13-17.
"For you created my inmost being: you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God!"
This situation has given me a new perspective of these verses. We really are fearfully and wonderfully made. Every part of our body, every organ, every system, every beating, moving part of our body from head to toe was no accident. We were created from nothing. A brilliant mind spoke us into being. And that my friend makes me speechless. Speechless, that someone that big and wonderful could love us. Despite are human-ness. And let me tell you I am being very human today.
Even with these good reports somehow today I feel like I've got the weight of the world on my shoulders. Monday's are one of the hardest days for me. Don't get me wrong we had a wonderful weekend. Josh came down Thursday evening after work. It's good to see him. One of the hardest things right now is the distance. I have told him that I will never be a commuter couple or a work widow ever again. I know this is only temporary but it doesn't make it any easier. My parents came over on Saturday to spend the day with us. We had a wonderful time playing games and celebrating my dad's birthday.
I think my issue is I am just home sick. I haven't seen my house in over a month. That's a long time, especially when I am starting to "nest". All I can do is think about what I would be doing if I were home and how much we do not have for this baby when he comes home. Due to this unforeseen situation I had to post pone my baby showers. Which made me sad because I was so looking forward to those. Please don't get me wrong, I would much rather be here knowing and having a plan to help Holt then being surprised after he is born. I still can't help but think, how after we leave the hospital is everything going to come together? Please also understand that I am writing only to document my thoughts. I know that someday I will look back on this and laugh when I think how silly I was to worry about little things like diapers or bottles. I would give those things up a thousand times over to have a healthy baby. It's just hard sitting here with nothing but time on my hands to think, and that's where I get in the most trouble. If I could just shut my brain off for a minute and listen to what I really know. The all of my need have been and will continue to be met, and I know the same for my son- God will provide for us.
The other night I woke up at 4:30 again and my mind went racing. I've decided this is when God has my undivided attention and we do a lot of dealing at this time. I started thinking "God how is all this going to work out? I don't have nothing for this child! Then my simple mind started listing everything that we don't have: a diaper bag, bottles, diapers, blankets, a monitor (how will I know if he's ok?? cause walking in the room and looking the "old fashion" way would of course never due! ;) ) I have no swing, how every will I put the kid down? How can a baby ever survive without a swing! The nursery is not finished- goodness the bedding is still in the bag! How is the world are we ever going to survive after we bring him home!!!" Let me tell you the answer I received.
This is a lesson that I have had to relearn. You would think that I would have gotten it by now. I KNOW with everything in me that God WILL provide everything we need, because He promises. I just can't get my brain up to speed with my heart!
In the middle of my silly prayer I heard this whispered to me in the most loving way-
"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you a hope and a future." (Jeremiah 29:11 ) Lauren, Just trust me, I've got it all under control!
I was then reminded that I had to learn this lesson just a few short months ago. You see getting pregnant was not the easiest thing for Josh and me. Not a lot of people know this but I had an appointment with an infertility doctor here in Dallas. I thought that was the road we were heading down. A couple days before the appointment I was filling out all the paper work and stopped in the middle of it and decided I was not ready to give up on God, so I cancelled the appointment. Josh and I decided to give it until the end of the year and if in January we still weren't pregnant I would reschedule the appointment. The next day as I was driving to work, I was discouraged. This was September and we had been trying since January and both were just frustrated. (I know what you're thinking, that's not a long time- but there's more to the story that I'll spare you the details) While driving and letting God know how frustrated I was he ever so gently reminded of this verse.
I felt like God was grabbing my cheeks looking me straight in the eyes and said "You believe I know the plans for I have for you but would you believe this for your unborn child? Would you believe that I KNOW the plans I have for him. For his future, one filled with hope and not harm. A plan to prosper him. I know when the exact egg will drop to be fertilized. I know the exact day you will find out about your child. I know the exact day when he will be born- it's just not time yet. I know what your future holds as a family. Will you not trust me? I know!" How can you argue with that?
So I placed our future in His hands and began praying that he would do "immeasurably more then all we can ask or imagine" (Eph 3:20) That my friend he did, I found out on November 19th that we were blessed with a child. Yes, God answers prayers! He answered our prayer, but not in the way that I had planned. He did it in his perfect timing and with his perfect plan.
Why is it that I know all this but there are days when I feel like my world is spinning out of control. For some reason lately I have felt the need to be prepared (I blame the hormones) and I am also learning that through this whole situation I have no way to be prepared. The "normal" is no longer our "normal". "Normal" for us has been forever changed. I am slowly learning that there really is no other way then trust in the Lord to help us find our new "normal". We'll get there eventually, it's a one day at a time process. I think that's why we are to daily "walk" with the Lord. I'm glad it's a walk, cause running gets you no where fast, except for out of breath. I am so thankful for the Lord's patience with me. And that he will teach me the same lesson over and over and over again. Hopefully one day we can move on to a new lesson! But until then, we are taking it one day at a time.
Before I end this post today I wanted to share with you some pictures my wonderful mother took of us this weekend. Another thing that I am having to deal with is not having maternity pictures taken. My passion is photography and I love a good picture. But this is part of our new "normal"- pictures taken from an iPhone at the hospital. On the other hand I am so grateful that I have a few good pictures to remind me of this time. Now that I have rambled enough here are a few pictures.
 |
 |
| I played in Photoshop yesterday evening to make this. |
I will forever treasure these memories because they will forever remind me of what a Savior we serve. Yes, the waiting is hard and never fun. But God has already preformed so many miracles in our lives and I know he's not yet finished with our family. Thank you for your continued prayers and encouragement. I cannot express to you what they mean to us.
Monday, June 11, 2012
35 weeks
Today I write this with a humble and happy heart. Friday we recieved some great news!
The day started out like every other Friday. 7:00 am I had my lovely wake up call by my nurse for my sonogram. Rolled my sleepy body out of bed, headed down the hall and into the exam room. where Dr. Weiss awaited to start the sonogram. The sono started out like every other sono has started at the head and works his way through the rest of the body. He paused while looking at Holt's heart, which after you've seen the pause at the heart you get nervous. Dr. Weiss said " Hum, I am no heart doctor but his heart looks like it is pumping a little better" He then said he was going to call Dr. Laird (one of the many pedi cardiologist) and talk to him about it. " Baby is still stable, looking good and subjectively his heart looks better" was the report I was told when I left the room. Later that afternoon Dr. Laird came by and gave us the update from the echo that I had on Thursday. He said that he and Dr. Weiss have discussed the sono and the echo and they both agree that his heart function is showing a little improvement. PRAISE THE LORD!! God is for sure answering our prayers.
We are by no means out of the woods but we are just thankful that there are signs of improvement and we are not going the opposite way. We will take any little victory we can get! Thank you Jesus!
So what does this mean- we still have critical AS but the left vent. is pumping a little better. Friday we also finally had our consult with Dr. Mendeloff (the cardiothoracic surgeon). He was great, explained in very clear and great detail all our possibilities. He told us that a normal valve and aorta in a baby his size are 8 mm and Holt's are measuring 5 mm (After the consult was over my intelligent husband did the math and said that it is less then half the normal size) and that with a valve this size we will have to have some kind of intervention for Holt, it might be at 2 days, 5 years old or 30 years old but at some point in his life there will be intervention through surgery. They would like to get him as old as possible, but of course we won't know until we see how the valve will hold up. They are planning to start with the balloon catherization and watch him for a while. If that doesn't work or doesn't hold up then we will talk about surgical options. Dr. Mendeloff explained to us the surgical option called the Norwood procedure, which is the series of three surgeries I have mentioned before. The first surgery will be right away and then we will have another surgery at 6 months and the final one at 3 years old. We have been told to expect to be in the NICU for a minimum of 4 weeks, and of course if surgery is needed then it will be longer.
He explained and drew pictures of the process of how the re-route the left valve to the right valve and they would use tissue from a body that was dedicated to science to enlarge the aorta. The surgery would be open heart surgery, which means his chest would be cracked open and he would be placed on bipass. If everything goes smoothly then the whole surgery would be 6-8 hours long. There are few risks that happen with a surgery like this, but of course they aren't anything like the risk of not having the surgery. This surgery gives us a 85% survival rate and this hospital is above the national average for sucessful surgeries. We are grateful to go from 50% survival to 85%.
Now we just play more of the waiting game. I have made it to 35 weeks and I've been told that in the next couple of weeks we will start talking about scheduling a delivery date. Please pray for my mind, I can't help but be nervous about that day. I know God is already preparing the OR where the c-section will happen it's just the unknowns that are hard to not think about. Also pray for wisdom for Josh and myself as we have difficult decisions to be made in the coming weeks. We are fully trusting that God is and will continue to work out the details.
I want to share this picture of Holt with you, isn't he just precious? Please pray for strength for this little guy. He has such a long hard battle a head of him.
Thank you for your prayers and encouragement.
The day started out like every other Friday. 7:00 am I had my lovely wake up call by my nurse for my sonogram. Rolled my sleepy body out of bed, headed down the hall and into the exam room. where Dr. Weiss awaited to start the sonogram. The sono started out like every other sono has started at the head and works his way through the rest of the body. He paused while looking at Holt's heart, which after you've seen the pause at the heart you get nervous. Dr. Weiss said " Hum, I am no heart doctor but his heart looks like it is pumping a little better" He then said he was going to call Dr. Laird (one of the many pedi cardiologist) and talk to him about it. " Baby is still stable, looking good and subjectively his heart looks better" was the report I was told when I left the room. Later that afternoon Dr. Laird came by and gave us the update from the echo that I had on Thursday. He said that he and Dr. Weiss have discussed the sono and the echo and they both agree that his heart function is showing a little improvement. PRAISE THE LORD!! God is for sure answering our prayers.
We are by no means out of the woods but we are just thankful that there are signs of improvement and we are not going the opposite way. We will take any little victory we can get! Thank you Jesus!
So what does this mean- we still have critical AS but the left vent. is pumping a little better. Friday we also finally had our consult with Dr. Mendeloff (the cardiothoracic surgeon). He was great, explained in very clear and great detail all our possibilities. He told us that a normal valve and aorta in a baby his size are 8 mm and Holt's are measuring 5 mm (After the consult was over my intelligent husband did the math and said that it is less then half the normal size) and that with a valve this size we will have to have some kind of intervention for Holt, it might be at 2 days, 5 years old or 30 years old but at some point in his life there will be intervention through surgery. They would like to get him as old as possible, but of course we won't know until we see how the valve will hold up. They are planning to start with the balloon catherization and watch him for a while. If that doesn't work or doesn't hold up then we will talk about surgical options. Dr. Mendeloff explained to us the surgical option called the Norwood procedure, which is the series of three surgeries I have mentioned before. The first surgery will be right away and then we will have another surgery at 6 months and the final one at 3 years old. We have been told to expect to be in the NICU for a minimum of 4 weeks, and of course if surgery is needed then it will be longer.
He explained and drew pictures of the process of how the re-route the left valve to the right valve and they would use tissue from a body that was dedicated to science to enlarge the aorta. The surgery would be open heart surgery, which means his chest would be cracked open and he would be placed on bipass. If everything goes smoothly then the whole surgery would be 6-8 hours long. There are few risks that happen with a surgery like this, but of course they aren't anything like the risk of not having the surgery. This surgery gives us a 85% survival rate and this hospital is above the national average for sucessful surgeries. We are grateful to go from 50% survival to 85%.
Now we just play more of the waiting game. I have made it to 35 weeks and I've been told that in the next couple of weeks we will start talking about scheduling a delivery date. Please pray for my mind, I can't help but be nervous about that day. I know God is already preparing the OR where the c-section will happen it's just the unknowns that are hard to not think about. Also pray for wisdom for Josh and myself as we have difficult decisions to be made in the coming weeks. We are fully trusting that God is and will continue to work out the details.
I want to share this picture of Holt with you, isn't he just precious? Please pray for strength for this little guy. He has such a long hard battle a head of him.
Thank you for your prayers and encouragement.
Monday, June 4, 2012
Standing on the Promises
I love music. I don't have very much musical talent but I love listening to it. There is something about music that can renew the soul. This morning I had a wonderful time of worship. I turned on Pandora while I was getting ready and the first song that came on was Selah singing "Standing on the Promises". Such a sweet song I grew up singing. I want to share the lyrics with you, because they just fit my situtaion so well.
Standing on the promises of Christ my King,
Through eternal ages let His praises ring,
Glory in the highest, I will shout and sing,
Standing on the promises of God.
Standing, standing,
Standing on the promises of God my Savior;
Standing, standing,
I’m standing on the promises of God.
Standing on the promises that cannot fail,
When the howling storms of doubt and fear assail,
By the living Word of God I shall prevail,
Standing on the promises of God.
Standing on the promises of God is about all I can do these days. I'm not gonna lie to you, lately I have been struggling. I know with everything in me that God has got this situation under complete control! My heart knows this but my head is a little slower to catch on. Just when I think I can't do this anymore I'm reminded of the miricle that God has already preformed. (and it makes it a little easier to sit here) Last week, Holly (cardiolgist nurse practitioner) came by to check on me and answer my questions. As I am processing this whole situation she (and every doctor that we have seen) has been so patient with me as I ask questions no matter how off the wall and crazy they might be. I don't rememeber the question but the answer Holly gave me made me stop and say "Thank you dear Jesus for watching out for my baby". She told me that 1 in 800 babies that are born have heart disease and one step further 1 in THOUSANDS of babies have the condition that Holt has. (lucky us huh?) She then went on to say (and this is the miricle) that finding this in the fetus NEVER happens. It is almost always found after the baby is born and it is usually to late to do anything. Sometimes I don't feel like "thank you" is enough. I mean my child's life was saved because of that sonogram.
It amazes me that God cared enough to prompt me for the sonogram. But if you think about it isn't that what God does? Isn't he in the saving business. Isn't that the whole reason why Jesus came to this earth? To save us? So why is it that when something like this happens I am amazed. I'm amazed that he cares enough about Josh and me and my unborn child to prompt me to ask for a sonogram. I'm sure you feel like I'm beating a dead horse into the ground... Yes, Lauren we all know all of this! You'll have to have a little patience with me as I process this whole situation. When something this traumatic happens it takes a while to process. And that my friend brings me to my struggles lately, I've been processing.
Last week for multiple nights straight I'd wake up at 4:30. Just wide awake. And of course what do you do when you are a wake that early in the morning? You think. Let me tell you I can think myself into the craziests of scenarios! Let me share one with you. (Please understand that I now laugh at this) I started processing our situation and rememeber that at one time I was told that Holt has a big head. Of course, being tired and hormonal, I went to the craziest place! (Here's where you can start laughing at my brain.) I thought childern with down's syndrome have heart problem and big heads. Of course fear and panic struck me. I started crying and praying "Lord, I don't know if I will be able to handle multiple problems. Isn't a severe heart problem enough?" After a few minutes of prayer I calmed down and feel back to sleep. I woke up with the thought still on my mind and of course had to ask about it. So poor Dr. Thomas (cardiologist) was asked the crazy question. He chuckled a little and reassured me that yes, babies with down's syndrome have heart problems it is completely different then the heart problem Holt has. He also said if there was any concern of this the OB's would be doing a number of test and I would for sure know about it by now. He then reassured me that he has had moments like that when he wakes up at night and his mind goes off the deep end. So atleast I'm in good company. Ha! I know full well that everything else (as far as they can tell) is 100% healthy and normal with Holt. If that reassurance wasn't enough Dr. Weiss assured me that yes, we have a baby with a big head but it's a normal big head. I'm pretty sure that it just means he'll be exta smart cause he has room for a bigger brain? Ha! I'll just keep thinking that!
After all this reassurance my heart calmed down a little. I know I'm new to this whole parenting thing and by no means do I have ANYTHING figured out. If anything I feel like I'm back at the starting line wondering "How do you care for a child with heart disease?" I have been told a number of times that before we are discharged they will make sure I feel comfortable with the instructions and know how to care for him. It gives me a little comfort knowing this. I still can't help but allow my mind to wonder to after he's born. I can't help but think about all that he is going to go through after he's delievered. It's really not fair if you think about it. I know and Josh knows what this little guy will face, but he has no clue! I've been given about 100 different scenarios of what will happen and all I can think of is I can't protect him from this. I would give anything to change places with him and go through it for him. But I can't. It gives me a better understand of why Jesus did what he did for me. I know he understands! Isn't that why he came to die? If you think about it we all suffer from heart disease- sin. But God gave us the ultimate healing. Only the blood of Jesus can cleanse our heart and make it new. So why is it such a struggle for me to comprehend this trial? I think it's because it's involves a whole new life. And that is a whole new concept for me.
Most first time parents get to atleast hold their child before making decisions for them. Josh and I have been making decisions for this kiddo for weeks and we have no idea when we'll get to hold him. Kinda makes it a lttle more challenging. I'm pretty sure that's why we were instructed to "Trust in the Lord with all your heart and lean not on your own understanding..."(prov.3:5) I have gone down the "why me" road. Why him? Why my child? Out of the 1000's of babies, why did it have to be us? It's not fair! Why can't I just have a "normal" child? and my friend I have no answer. I know that this is a good thing that I am going down this road. It's part of my healing process. I also know God is big enough and patient enough to listen to my questions. Though I don't have an answer for these question (and probably won't this side of heaven,) I have the peace that passes all understanding. What more do you need?
There has been a song on repeat in my head, I know it's my answer for now. It's called "Safe" (I believe Phil Wickham sings it.) The whole song is very powerful but the part that has been stuck in my head is this part:
You will be safe in His arms
You will be safe in His arms
'Cause the hands that hold the world
are holding your heart
This is the promise He made
He will be with You always
When everything is falling apart
You will be safe in His arms
And here is the part that gives me tingles and makes me smile:
These are the hands that built the mountains
the hands that calm the seas
These are the arms that hold the heavens
they are holding you and me
These are hands that healed the leper
Pulled the lame up to their feet
These are the arms that were nailed to a cross to break our chains and set us free
Wow! Those hands have my heart and my precious little boys heart in his hands! Those are pretty powerful hands but gentle enough to hold on tight to us during this storm. My heart can rest easy knowing that we are in good hands, no matter what the out come. Thank you for listening to me.
I know this has been a lengthy post, but it is therapy for me to write down my thoughts. I know without a doubt that we are going to be ok because I've been promised that "in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8:28) And that's the promise I am standing on today.
Quick update on Holt. He is still stable and growing. He weighs 4 pounds 11 ounces, which is good. We want him to be a big 'o' baby. The echo last week was identical to the previous 2 weeks. Dr. Thomas said that you could put all the echo's on top of each other and they would looks exactly alike. I said "good" and he told me he is glad I'm learning to say "good" to this. I told him we love to hear the words "stable" and "same". He agreed, they like saying those words. As for due date they are still fully expecting me to go to full term, this week I am 34 weeks. Which means, the most I'll be here is 6 more weeks! Wo hoo!! Let the count down begin. Of course we'll be here alot longer with him, but I will be able to leave the hospital and come back. When it gets closer to my due date they are going to schedule a date for my c-section. They want to ensure that everyone that needs to be available will be here so they will give Holt the best care they can give him. Of course I will keep you posted on all of this.
Thank you again for your prayers and encouragement. I don't have much contact with the outside world and love whenever I do have contact, it calms my fear that I'm not forgotten about while I sit in this lovely hospital room. I know, I know-- my mind is just going crazy here!
My last note, I want to leave you with this verse I have been praying for this kiddo and my family for a while now and would ask for you to join in this prayer with me. "Now to Him who is able to do immeasurably more than all we can ask or imagine" (Eph. 3:20)
He is able and I can't wait to see what He is going to continue do in the life of our son.
Thank you for your prayers!
Standing on the promises of Christ my King,
Through eternal ages let His praises ring,
Glory in the highest, I will shout and sing,
Standing on the promises of God.
Standing, standing,
Standing on the promises of God my Savior;
Standing, standing,
I’m standing on the promises of God.
Standing on the promises that cannot fail,
When the howling storms of doubt and fear assail,
By the living Word of God I shall prevail,
Standing on the promises of God.
Standing on the promises of God is about all I can do these days. I'm not gonna lie to you, lately I have been struggling. I know with everything in me that God has got this situation under complete control! My heart knows this but my head is a little slower to catch on. Just when I think I can't do this anymore I'm reminded of the miricle that God has already preformed. (and it makes it a little easier to sit here) Last week, Holly (cardiolgist nurse practitioner) came by to check on me and answer my questions. As I am processing this whole situation she (and every doctor that we have seen) has been so patient with me as I ask questions no matter how off the wall and crazy they might be. I don't rememeber the question but the answer Holly gave me made me stop and say "Thank you dear Jesus for watching out for my baby". She told me that 1 in 800 babies that are born have heart disease and one step further 1 in THOUSANDS of babies have the condition that Holt has. (lucky us huh?) She then went on to say (and this is the miricle) that finding this in the fetus NEVER happens. It is almost always found after the baby is born and it is usually to late to do anything. Sometimes I don't feel like "thank you" is enough. I mean my child's life was saved because of that sonogram.
It amazes me that God cared enough to prompt me for the sonogram. But if you think about it isn't that what God does? Isn't he in the saving business. Isn't that the whole reason why Jesus came to this earth? To save us? So why is it that when something like this happens I am amazed. I'm amazed that he cares enough about Josh and me and my unborn child to prompt me to ask for a sonogram. I'm sure you feel like I'm beating a dead horse into the ground... Yes, Lauren we all know all of this! You'll have to have a little patience with me as I process this whole situation. When something this traumatic happens it takes a while to process. And that my friend brings me to my struggles lately, I've been processing.
Last week for multiple nights straight I'd wake up at 4:30. Just wide awake. And of course what do you do when you are a wake that early in the morning? You think. Let me tell you I can think myself into the craziests of scenarios! Let me share one with you. (Please understand that I now laugh at this) I started processing our situation and rememeber that at one time I was told that Holt has a big head. Of course, being tired and hormonal, I went to the craziest place! (Here's where you can start laughing at my brain.) I thought childern with down's syndrome have heart problem and big heads. Of course fear and panic struck me. I started crying and praying "Lord, I don't know if I will be able to handle multiple problems. Isn't a severe heart problem enough?" After a few minutes of prayer I calmed down and feel back to sleep. I woke up with the thought still on my mind and of course had to ask about it. So poor Dr. Thomas (cardiologist) was asked the crazy question. He chuckled a little and reassured me that yes, babies with down's syndrome have heart problems it is completely different then the heart problem Holt has. He also said if there was any concern of this the OB's would be doing a number of test and I would for sure know about it by now. He then reassured me that he has had moments like that when he wakes up at night and his mind goes off the deep end. So atleast I'm in good company. Ha! I know full well that everything else (as far as they can tell) is 100% healthy and normal with Holt. If that reassurance wasn't enough Dr. Weiss assured me that yes, we have a baby with a big head but it's a normal big head. I'm pretty sure that it just means he'll be exta smart cause he has room for a bigger brain? Ha! I'll just keep thinking that!
After all this reassurance my heart calmed down a little. I know I'm new to this whole parenting thing and by no means do I have ANYTHING figured out. If anything I feel like I'm back at the starting line wondering "How do you care for a child with heart disease?" I have been told a number of times that before we are discharged they will make sure I feel comfortable with the instructions and know how to care for him. It gives me a little comfort knowing this. I still can't help but allow my mind to wonder to after he's born. I can't help but think about all that he is going to go through after he's delievered. It's really not fair if you think about it. I know and Josh knows what this little guy will face, but he has no clue! I've been given about 100 different scenarios of what will happen and all I can think of is I can't protect him from this. I would give anything to change places with him and go through it for him. But I can't. It gives me a better understand of why Jesus did what he did for me. I know he understands! Isn't that why he came to die? If you think about it we all suffer from heart disease- sin. But God gave us the ultimate healing. Only the blood of Jesus can cleanse our heart and make it new. So why is it such a struggle for me to comprehend this trial? I think it's because it's involves a whole new life. And that is a whole new concept for me.
Most first time parents get to atleast hold their child before making decisions for them. Josh and I have been making decisions for this kiddo for weeks and we have no idea when we'll get to hold him. Kinda makes it a lttle more challenging. I'm pretty sure that's why we were instructed to "Trust in the Lord with all your heart and lean not on your own understanding..."(prov.3:5) I have gone down the "why me" road. Why him? Why my child? Out of the 1000's of babies, why did it have to be us? It's not fair! Why can't I just have a "normal" child? and my friend I have no answer. I know that this is a good thing that I am going down this road. It's part of my healing process. I also know God is big enough and patient enough to listen to my questions. Though I don't have an answer for these question (and probably won't this side of heaven,) I have the peace that passes all understanding. What more do you need?
There has been a song on repeat in my head, I know it's my answer for now. It's called "Safe" (I believe Phil Wickham sings it.) The whole song is very powerful but the part that has been stuck in my head is this part:
You will be safe in His arms
You will be safe in His arms
'Cause the hands that hold the world
are holding your heart
This is the promise He made
He will be with You always
When everything is falling apart
You will be safe in His arms
And here is the part that gives me tingles and makes me smile:
These are the hands that built the mountains
the hands that calm the seas
These are the arms that hold the heavens
they are holding you and me
These are hands that healed the leper
Pulled the lame up to their feet
These are the arms that were nailed to a cross to break our chains and set us free
Wow! Those hands have my heart and my precious little boys heart in his hands! Those are pretty powerful hands but gentle enough to hold on tight to us during this storm. My heart can rest easy knowing that we are in good hands, no matter what the out come. Thank you for listening to me.
I know this has been a lengthy post, but it is therapy for me to write down my thoughts. I know without a doubt that we are going to be ok because I've been promised that "in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8:28) And that's the promise I am standing on today.
Quick update on Holt. He is still stable and growing. He weighs 4 pounds 11 ounces, which is good. We want him to be a big 'o' baby. The echo last week was identical to the previous 2 weeks. Dr. Thomas said that you could put all the echo's on top of each other and they would looks exactly alike. I said "good" and he told me he is glad I'm learning to say "good" to this. I told him we love to hear the words "stable" and "same". He agreed, they like saying those words. As for due date they are still fully expecting me to go to full term, this week I am 34 weeks. Which means, the most I'll be here is 6 more weeks! Wo hoo!! Let the count down begin. Of course we'll be here alot longer with him, but I will be able to leave the hospital and come back. When it gets closer to my due date they are going to schedule a date for my c-section. They want to ensure that everyone that needs to be available will be here so they will give Holt the best care they can give him. Of course I will keep you posted on all of this.
Thank you again for your prayers and encouragement. I don't have much contact with the outside world and love whenever I do have contact, it calms my fear that I'm not forgotten about while I sit in this lovely hospital room. I know, I know-- my mind is just going crazy here!
My last note, I want to leave you with this verse I have been praying for this kiddo and my family for a while now and would ask for you to join in this prayer with me. "Now to Him who is able to do immeasurably more than all we can ask or imagine" (Eph. 3:20)
He is able and I can't wait to see what He is going to continue do in the life of our son.
Thank you for your prayers!
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