Saturday, January 30, 2010
99 Balloons
What a beautiful, amazing reminder of how blessed I am. Although we are at day 80 in the hospital, and today was my baby's due date, and I am so very tired and weary, my baby is healthy. He is strong. He will come home (eventually) and join our family with minimal health concerns from here on out. And so I have to share this video. I feel so grateful that God has taken care of our beautiful boy.
Prayer
Prayer is a pretty important part of the Christian walk. Scripture is filled with passages imploring brothers and sisters to pray-for one another, for our needs, for healing, etc. We are even given a model for how to pray from Jesus Christ (Matthew 6:9-13). I am not going to break down the Lord's prayer today, or discuss all the different things we should or should not be praying for. No, I simply want to discuss the habit of prayer in our daily lives. (Keeping in mind, of course, that I am by no means an expert on prayer, nor is this the complete authority on prayer. Scripture has much more to say than this, and I would encourage you to check it out!).
I have simply realized lately just how lacking my own prayer life is. Yes, I pray for my son, and my family and our needs. And I try to pray for others in our church family who are hurting. But how much time, of the 24 hours in a day, do I actually spend in prayer? How many times do I smile at a friend and say,"Well, I'll definitely be praying about that for you," and then actually pray for that individual? How often do I settle down to pray, only to get distracted, and instead start checking things off my mental to do list, or thinking about the errands I need to run, or what I'm going to cook for dinner (ok, so I don't really cook much, and it's not very likely that I would be thinking that far ahead, but you get the idea)?
So I have been thinking about this a lot lately, and who knows, maybe it's just me, but this is something I seriously need to work on. The question that comes to my mind, then, is just how much of my time should be spent in prayer? I mean, I am one busy woman. I have a one year old at home, a (almost) three month old in the hospital, commitments at church, a house to keep clean...I could go on and on. As I carve out those oh so precious time slots in my day for the many things I need to accomplish, how much time should be devoted to prayer? Just one long prayer session first thing in the morning?
Ok, so I have to be honest. I'm not really trying to quantify my prayer life, or pencil it in to my date book whenever best suits my schedule, i.e. when my daughter is napping and all chores are done. But scripture does answer the question, "How much of my time should be devoted to prayer?"
Pray without ceasing. Or, in other translations, "Never stop praying," and "pray continually." That's quite a tall order! We should be praying all the time! Obviously, this does not mean we should spend literally 24 hours a day knelt down before an alter, eyes closed, head to the ground (although quiet moments away from the hustle and bustle of life certainly have their place). We have to live our lives. But as we live our lives, we should be conversing with God. Praising God. Thanking God. Asking questions. Asking for guidance as we go about our day. Prayer is not a chore to check off our list, but rather, a continual conversation with the Lord, that should be as natural to us as breathing. What kind of impact would that commitment have on our personal walk with God? On the body of believers? On the church in America?
This kind of prayer life certainly takes some getting used to. And believe me, I am speaking to myself first and foremost! But if you are committed, and pray that the Holy Spirit would guide you and give you a desire to draw closer to the Lord in prayer, it will become more natural. I have also found a prayer journal to be an invaluable tool. Sometimes I write out an entire prayer, sometimes I simply make note of prayer requests that I don't want to forget. But either way, it helps me stay focused, and held accountable for the things I need to be praying about. It is also a GREAT way to see God answer prayers. There have been times in my life when God answered a prayer, and I didn't even realize it until I went back and read a previous prayer request in my journal.
Today, my prayer is that we would get back to prayer. That it would become a habit so ingrained in our lives, we would pray without ceasing. That we would take seriously our prayer life, and recommit to keep our thoughts focused on God and his marvelous plan. That we would spend more time talking to God, and less time on the things that only distract us further. Please feel free to add any specific prayer requests to this post, as I would like to commit to pray for you and your needs, as you all have so faithfully been praying for me and my son. Thank you!
I have simply realized lately just how lacking my own prayer life is. Yes, I pray for my son, and my family and our needs. And I try to pray for others in our church family who are hurting. But how much time, of the 24 hours in a day, do I actually spend in prayer? How many times do I smile at a friend and say,"Well, I'll definitely be praying about that for you," and then actually pray for that individual? How often do I settle down to pray, only to get distracted, and instead start checking things off my mental to do list, or thinking about the errands I need to run, or what I'm going to cook for dinner (ok, so I don't really cook much, and it's not very likely that I would be thinking that far ahead, but you get the idea)?
So I have been thinking about this a lot lately, and who knows, maybe it's just me, but this is something I seriously need to work on. The question that comes to my mind, then, is just how much of my time should be spent in prayer? I mean, I am one busy woman. I have a one year old at home, a (almost) three month old in the hospital, commitments at church, a house to keep clean...I could go on and on. As I carve out those oh so precious time slots in my day for the many things I need to accomplish, how much time should be devoted to prayer? Just one long prayer session first thing in the morning?
"Listen to my voice in the morning, Lord. Each morning I bring my requests to you and wait expectantly." Psalm 5:3
Of course, when I wake up is a great time to spend with God in prayer, but surely we should spend more of our time than that. Maybe when we sit down to eat a meal. That's always a good time to pray, right? Then you can fit in three prayers a day.
Ok, so I have to be honest. I'm not really trying to quantify my prayer life, or pencil it in to my date book whenever best suits my schedule, i.e. when my daughter is napping and all chores are done. But scripture does answer the question, "How much of my time should be devoted to prayer?"
1 Thessalonians 5:17: "Pray without ceasing."
Pray without ceasing. Or, in other translations, "Never stop praying," and "pray continually." That's quite a tall order! We should be praying all the time! Obviously, this does not mean we should spend literally 24 hours a day knelt down before an alter, eyes closed, head to the ground (although quiet moments away from the hustle and bustle of life certainly have their place). We have to live our lives. But as we live our lives, we should be conversing with God. Praising God. Thanking God. Asking questions. Asking for guidance as we go about our day. Prayer is not a chore to check off our list, but rather, a continual conversation with the Lord, that should be as natural to us as breathing. What kind of impact would that commitment have on our personal walk with God? On the body of believers? On the church in America?
This kind of prayer life certainly takes some getting used to. And believe me, I am speaking to myself first and foremost! But if you are committed, and pray that the Holy Spirit would guide you and give you a desire to draw closer to the Lord in prayer, it will become more natural. I have also found a prayer journal to be an invaluable tool. Sometimes I write out an entire prayer, sometimes I simply make note of prayer requests that I don't want to forget. But either way, it helps me stay focused, and held accountable for the things I need to be praying about. It is also a GREAT way to see God answer prayers. There have been times in my life when God answered a prayer, and I didn't even realize it until I went back and read a previous prayer request in my journal.
Today, my prayer is that we would get back to prayer. That it would become a habit so ingrained in our lives, we would pray without ceasing. That we would take seriously our prayer life, and recommit to keep our thoughts focused on God and his marvelous plan. That we would spend more time talking to God, and less time on the things that only distract us further. Please feel free to add any specific prayer requests to this post, as I would like to commit to pray for you and your needs, as you all have so faithfully been praying for me and my son. Thank you!
Friday, January 29, 2010
Time to Eat!
Today was a good day. Late yesterday the doctors took the CPAP off my little guy and he is doing great. We decided to visit last night (which is odd, because normally we visit during the day), so we were wonderfully surprised to see him alert and awake and WITHOUT any oxygen. No ventilator, no CPAP, no high flow cannula. Nothing! So we got to spend some really great and much needed time with him, and also got to help give him a "bath,"* which is something we have never gotten to do. The nurse couldn't believe that this was our first time helping with bath time, considering he is now 79 days old, but we usually aren't there during the night shift.
*Bath actually means laying a water proof pad down on his bed, cautiously scrubbing him with wet, soapy cloths, meticulously avoiding his battle scars from surgery, then quickly drying him with a blanket and getting him dressed again.
So it was a good time, and today, because he is doing so well off of oxygen now, the doctor decided he can begin bottle feeding again. At first, she decided he could try once a day. But I went to see him, and talked to the nurse and doctor, and explained that he was taking a bottle three times a day before surgery. So after he drank just about the entire bottle this afternoon, she said he could try three times a day, and we'll see how he does.
This is a big deal, because he cannot go home until he can eat his entire bottle at every feeding (eight feedings a day). The doctors start slow, to see what babies can do, and increase bottle feedings until they are drinking a bottle (or breastfeeding) at every feed. Therefore, to start with three feedings a day instead of one gives us a little bit of a jump start.
If he does well, they will let him try to eat on his own four times a day, then six, then eight, until he is eating well enough that he can GO HOME. So for now, it is time to eat up, and show the doctors that he is strong enough and capable enough to chug those bottles and grow big and strong!
*Bath actually means laying a water proof pad down on his bed, cautiously scrubbing him with wet, soapy cloths, meticulously avoiding his battle scars from surgery, then quickly drying him with a blanket and getting him dressed again.
So it was a good time, and today, because he is doing so well off of oxygen now, the doctor decided he can begin bottle feeding again. At first, she decided he could try once a day. But I went to see him, and talked to the nurse and doctor, and explained that he was taking a bottle three times a day before surgery. So after he drank just about the entire bottle this afternoon, she said he could try three times a day, and we'll see how he does.
This is a big deal, because he cannot go home until he can eat his entire bottle at every feeding (eight feedings a day). The doctors start slow, to see what babies can do, and increase bottle feedings until they are drinking a bottle (or breastfeeding) at every feed. Therefore, to start with three feedings a day instead of one gives us a little bit of a jump start.
If he does well, they will let him try to eat on his own four times a day, then six, then eight, until he is eating well enough that he can GO HOME. So for now, it is time to eat up, and show the doctors that he is strong enough and capable enough to chug those bottles and grow big and strong!
Thursday, January 28, 2010
Slow But Steady
Well, the doctors were finally able to successfully extubate my little guy yesterday, but immediately put him back on bubble CPAP just to be safe. He has been breathing comfortably and sleeping well, so thankfully, he no longer needs the ventilator. After the rough time he had Tuesday, however, the doctors don't want to rush anything. So he is still on bubble CPAP, and is not trying to bottle feed (or breastfeed) at all yet.
As far as recovering from surgery goes, he is doing well. He is no longer on morphine, and finally had the chest tube taken out, so that can begin to heal now. He is on another medication to help keep him a little sedated so that he can rest and his body can get used to being off morphine, but they will be weaning him off of that soon as well.
Other than that, nothing has really changed, except that he is continuing to grow. He is up to 8 pounds, and growing pretty consistently now that he is no longer on IV fluids and lasix and other drugs, and back to eating two ounces of milk every three hours.
Thank you for your prayers, I will continue to post updates. =)
As far as recovering from surgery goes, he is doing well. He is no longer on morphine, and finally had the chest tube taken out, so that can begin to heal now. He is on another medication to help keep him a little sedated so that he can rest and his body can get used to being off morphine, but they will be weaning him off of that soon as well.
Other than that, nothing has really changed, except that he is continuing to grow. He is up to 8 pounds, and growing pretty consistently now that he is no longer on IV fluids and lasix and other drugs, and back to eating two ounces of milk every three hours.
Thank you for your prayers, I will continue to post updates. =)
Tuesday, January 26, 2010
What A Day...
This morning, the doctors decided to try to take out the ventilator. At first my baby was doing well, and they believed he did not need oxygen. After about 20 minutes, however, the nurse noticed he was struggling with stridor, a sort of gasping for breath, choking noise. This was caused from inflammation in his airway because of irritation from the breathing tube. The doctor tried twice to give him recemic epi to get the swelling down and allow him to breathe, but that did not work. Then she tried him on a CPAP to help provide oxygen and flow through his airway, but he was on 100% oxygen and still in distress. So, ultimately, she had to re-intubate him.
It is so frustrating to know that all of this was caused by the ventilator, but the only solution was the ventilator.
So instead of breathing room air, and starting to work on bottle-feeding again, he is still on the ventilator. He is now getting a steroid medication to try and (hopefully) get the swelling down so we can try again tomorrow. Unfortunately, there is no way to know if it has gotten better until they try to extubate him again. Please be praying that this will do the trick, and that he will not go through this again tomorrow. He hates that breathing tube so much, and will be so much more comfortable when he can breathe without it!
Thanks friends,
It is so frustrating to know that all of this was caused by the ventilator, but the only solution was the ventilator.
So instead of breathing room air, and starting to work on bottle-feeding again, he is still on the ventilator. He is now getting a steroid medication to try and (hopefully) get the swelling down so we can try again tomorrow. Unfortunately, there is no way to know if it has gotten better until they try to extubate him again. Please be praying that this will do the trick, and that he will not go through this again tomorrow. He hates that breathing tube so much, and will be so much more comfortable when he can breathe without it!
Thanks friends,
Saturday, January 23, 2010
Recovery
So far, my little guy is doing ok. They put him on a ventilator to breathe while he recovers from surgery and adjusts to having the ductus closed. Although he is still on it, they are trying to wean him off, and have already been able to lower the settings and the amount of oxygen he is getting. He also still has a tube in his chest to help drain the fluids from his chest and lungs, but I am hoping they will be able to take it out soon so that he can begin to heal. I think that tube might be more painful for him than the actual incision from the surgery.
Right now, the nurse is trying to keep him comfortable, while also weaning him off the ventilator. This is a very fine balance. Because he is in pain, which is also causing his blood pressure to be high, they are giving him morphine. But being drugged up on morphine hinders his ability to breathe entirely on his own. So they are doing the best they can. Obviously, they do not want him to be in pain. We are hoping that by tomorrow his pain will be more under control and they can get him off the ventilator.
This morning they were able to start his feedings again, slowly, and he is tolerating it well so far. For the time being he is only getting 20 ml every three hours (before surgery he was eating 60 ml). One good thing about this is that it gives me a chance to get a little ahead in pumping milk for him. I was getting behind, as he eats more in a day than I can pump.
Overall, he is tolerating things well. It is so incredibly hard to see him hooked up to so many tubes again, after feeling like we were past all the IV's and breathing aids. And it is definitely hard to see him squinting in pain. But we're hoping by this time tomorrow the worst will be over, and being so small and young gives him a huge advantage as far as recovery goes (babies bounce back much faster than older children, and much MUCH faster than adults).
Thank you so much for all your prayers. We absolutely see God at work in our son's life, and continue to trust in His plan.
Right now, the nurse is trying to keep him comfortable, while also weaning him off the ventilator. This is a very fine balance. Because he is in pain, which is also causing his blood pressure to be high, they are giving him morphine. But being drugged up on morphine hinders his ability to breathe entirely on his own. So they are doing the best they can. Obviously, they do not want him to be in pain. We are hoping that by tomorrow his pain will be more under control and they can get him off the ventilator.
This morning they were able to start his feedings again, slowly, and he is tolerating it well so far. For the time being he is only getting 20 ml every three hours (before surgery he was eating 60 ml). One good thing about this is that it gives me a chance to get a little ahead in pumping milk for him. I was getting behind, as he eats more in a day than I can pump.
Overall, he is tolerating things well. It is so incredibly hard to see him hooked up to so many tubes again, after feeling like we were past all the IV's and breathing aids. And it is definitely hard to see him squinting in pain. But we're hoping by this time tomorrow the worst will be over, and being so small and young gives him a huge advantage as far as recovery goes (babies bounce back much faster than older children, and much MUCH faster than adults).
Thank you so much for all your prayers. We absolutely see God at work in our son's life, and continue to trust in His plan.
Thursday, January 21, 2010
PDA Ligation
UPDATE:
The surgery went well and my son is now back in the ICU resting. He has not woken up from the anesthesia yet, and is having some trouble with his blood pressure. Right now, he is still on the ventilator, and is not getting feedings, just IV fluids. Other than that, the nurse is just trying to help control the pain so that he can rest peacefully. As the anesthesia wears off, they will begin to wean him off the ventilator, and continue to watch him to see when they can begin feeds again. Hopefully within a day or two they will be able to move him back over to the progressive side of the unit.
Original Post:
I apologize for being late with this update, but it has been a busy couple of days. After consulting with three different cardiologists, our son's doctor decided that his PDA has gotten too bad, and is causing too much stress to his body to wait any longer. He called the surgeon yesterday and now has surgery scheduled for tomorrow (Friday) afternoon.
Thankfully, to close the PDA will not require open heart surgery. Instead, they are performing a ligation. The surgeon will cut a small incision on his left side, go through his ribs and tie the blood vessel closed. The total time in the operating room will be about an hour to an hour and a half, but the surgery itself should only be 30-45 minutes. He will still have to be under general anesthesia, and received a blood transfusion today to get his blood count a little higher before getting the anesthesia and having surgery.
During and after the surgery he will be receiving IV fluids, will have a tube in his chest to help drain any excess fluids, and will also have to be put on a ventilator. Hopefully, the surgery will go well and recovery will be quick (about a day or two). Once he is recovered, he will begin working on feedings again, which I am anticipating going much better, and progressing much faster once his PDA is corrected.
Please be in prayer for my son, that he would handle the anesthesia well, and not have any complications, and that the surgery will correct all the challenges he has been facing for the past 71 days. Please also pray for the doctors performing the surgery, and the nurses who will be caring for him during recovery. Thank you so much, friends. I will try to post an update tomorrow as soon as I am able.
The surgery went well and my son is now back in the ICU resting. He has not woken up from the anesthesia yet, and is having some trouble with his blood pressure. Right now, he is still on the ventilator, and is not getting feedings, just IV fluids. Other than that, the nurse is just trying to help control the pain so that he can rest peacefully. As the anesthesia wears off, they will begin to wean him off the ventilator, and continue to watch him to see when they can begin feeds again. Hopefully within a day or two they will be able to move him back over to the progressive side of the unit.
Original Post:
I apologize for being late with this update, but it has been a busy couple of days. After consulting with three different cardiologists, our son's doctor decided that his PDA has gotten too bad, and is causing too much stress to his body to wait any longer. He called the surgeon yesterday and now has surgery scheduled for tomorrow (Friday) afternoon.
Thankfully, to close the PDA will not require open heart surgery. Instead, they are performing a ligation. The surgeon will cut a small incision on his left side, go through his ribs and tie the blood vessel closed. The total time in the operating room will be about an hour to an hour and a half, but the surgery itself should only be 30-45 minutes. He will still have to be under general anesthesia, and received a blood transfusion today to get his blood count a little higher before getting the anesthesia and having surgery.
During and after the surgery he will be receiving IV fluids, will have a tube in his chest to help drain any excess fluids, and will also have to be put on a ventilator. Hopefully, the surgery will go well and recovery will be quick (about a day or two). Once he is recovered, he will begin working on feedings again, which I am anticipating going much better, and progressing much faster once his PDA is corrected.
Please be in prayer for my son, that he would handle the anesthesia well, and not have any complications, and that the surgery will correct all the challenges he has been facing for the past 71 days. Please also pray for the doctors performing the surgery, and the nurses who will be caring for him during recovery. Thank you so much, friends. I will try to post an update tomorrow as soon as I am able.
Tuesday, January 19, 2010
Results
Well it has been a very long day, and with it, a great deal of waiting. But finally this afternoon we were able to talk with our son's doctor for a few minutes and discuss all his test results and where we will go from here.
The echocardiogram from yesterday showed that his patent ductus arteriosus (PDA) is still large and causing stress to his heart. His doctor called for a cardiologist to come and see him (hopefully sometime today or early tomorrow), to help make some decisions about what to do next. It seemed to me that his doctor is not nearly as optimistic that it will close on its own anymore, and is starting to think that he may need heart surgery. Hopefully, consulting a cardiologist will help shed some light, and allow his doctor to make the right decision for him at this time. We are hoping to hear back from the doctor tomorrow so that we will have a better idea of what their plans are, so please be in prayer for all the doctors who are seeing him right now.
On the bright side, he had an MRI today to look at his head and check on the hemorrhage around his brain, and it has cleared itself up, AND it did not leave any scarring, which could have led to some permanent damage. So we are very excited and thankful for that!
ALSO, I was able to try and breastfeed for the very first time today (he is now 69 days old). It is most definitely something he will have to work on and practice, but he can definitely do it, so I was very encouraged!
Even though he still has several heart defects, he is growing and doing unbelievably well. He has been off of oxygen for a full week now (the longest period of time yet), and when he is breathing well and awake, is capable of drinking an entire bottle, which is fantastic. There are babies in the NICU who don't have any heart defects who are not interested or have the stamina to drink their bottle. So we are very proud of him, and convinced he is a remarkably strong boy!
Thank you so very much for your continued prayers!
The echocardiogram from yesterday showed that his patent ductus arteriosus (PDA) is still large and causing stress to his heart. His doctor called for a cardiologist to come and see him (hopefully sometime today or early tomorrow), to help make some decisions about what to do next. It seemed to me that his doctor is not nearly as optimistic that it will close on its own anymore, and is starting to think that he may need heart surgery. Hopefully, consulting a cardiologist will help shed some light, and allow his doctor to make the right decision for him at this time. We are hoping to hear back from the doctor tomorrow so that we will have a better idea of what their plans are, so please be in prayer for all the doctors who are seeing him right now.
On the bright side, he had an MRI today to look at his head and check on the hemorrhage around his brain, and it has cleared itself up, AND it did not leave any scarring, which could have led to some permanent damage. So we are very excited and thankful for that!
ALSO, I was able to try and breastfeed for the very first time today (he is now 69 days old). It is most definitely something he will have to work on and practice, but he can definitely do it, so I was very encouraged!
Even though he still has several heart defects, he is growing and doing unbelievably well. He has been off of oxygen for a full week now (the longest period of time yet), and when he is breathing well and awake, is capable of drinking an entire bottle, which is fantastic. There are babies in the NICU who don't have any heart defects who are not interested or have the stamina to drink their bottle. So we are very proud of him, and convinced he is a remarkably strong boy!
Thank you so very much for your continued prayers!
Friday, January 15, 2010
100th Post!
So this is my 100th post! Crazy! Since I guess this is a pretty big milestone, I am going to celebrate by sharing 100 totally random things about me. Wow, that's a lot of random things. Actually, as I am typing this, I am convinced that I cannot, in fact, think of 100 different things about myself to share with you. And actually, now that I think of it, you probably don't care that much anyway. =) (You could, however, read Jeanette's 100th post-she is a much more creative and interesting lady than I am! Haha!)
So I guess for tonight, all I have are pictures of my beautiful babies. They're pretty much the cutest babies I've ever seen. I mean, if I am being totally and completely unbiased.
So I guess for tonight, all I have are pictures of my beautiful babies. They're pretty much the cutest babies I've ever seen. I mean, if I am being totally and completely unbiased.
Don't you agree?
Thursday, January 14, 2010
One Step at a Time
Well, my little boy is making progress, one tiny baby step at a time. He is still only getting a bottle three times a day, but he's doing really well. Today, he drank his entire bottle at 8 o'clock and 2 o'clock. What is really amazing about that, is that they have taken him off his nasal cannula again. I am trying not to get too excited about his being off oxygen, because they have tried soooo many times (and after a day or so, it ends up back on), but this time he really seems to be doing well. So far, he has been off for almost 48 hours, and has done pretty well with his three bottles a day. I'm hopeful that he is finally off it for good! (I'm also hopeful that tomorrow I will remember my camera and can take some pictures without the cannula!)
He is scheduled for his next echocardiogram on Monday, to look at his heart and see if any of the holes have closed or gotten any smaller. I am praying everyday that his PDA is closed, so that hopefully he will not need heart surgery. We should have results on Tuesday, so I will keep you posted! Thank you for your prayers as well!!
He is also gaining weight like crazy, and is now 7 pounds, 1 ounce. He has already outgrown his preemie diapers, and he will probably outgrow his preemie clothes before he goes home (if he hasn't already). I just can't get over how big he is! Tonight his nurse went on and on about how much he's grown (she hasn't seen him since Christmas) and what a cute, sweet baby he is. I love hearing things like that, haha!
Wednesday, January 13, 2010
Monday, January 11, 2010
Two Months
My baby is two months old today!
Two months old, and the size of a full term baby. He is now up to 6 pounds, 12 ounces. It's funny how perspectives can change. When my daughter was born, she weighed 6 pounds, 3 ounces and seemed so incredibly tiny. Now, I look at my son and marvel at how big he is!
But we will get through this. He will get though this. And I know he will be unbelievably strong. One day.
Saturday, January 9, 2010
Weekend Update
My little man is doing well. He is getting so big, and stronger everyday. His PDA (patent ductus arteriosus) is still open and causing some problems. He has to work a little harder to breathe, still has some dips in his oxygen saturation, and some moments when he breathes too fast, and is having some trouble with fluid retention in his body and lungs. Every couple of days, the doctors give him lasix, a diuretic that helps him get rid of the excess fluid, and that seems to help. He seems more relaxed and not as labored in his breathing.
They have also taken the nasal cannula off for now to see how he does without it. They had weaned him down to a very very low flow, and he was doing fine, but whenever he took a bottle, he needed extra oxygen to help him out as he worked on breathing and eating at the same time. So we will see how he does. They may need to put it back on if he is not able to eat and gain weight like he has been.
Also, he is up to three bottle feedings a day (out of eight feedings). Most of the time, he does really well, and drinks all or almost all of it (he gets 60 ml of milk every three hours and often drinks at least 45-50 on his own before the remainder goes in the feeding tube). I was able to feed him yesterday, and I can definitely tell a huge improvement. He is getting more coordinated, and is learning not to take things too fast. He will chug a few sips, then take a few deep breaths, then drink some more. If he seems like he is still able to do this well without his cannula, they may start to increase his bottle feedings this week. We're certainly hopeful!
Thank you all so very much for your prayers and encouragement. We are so thankful that our son is doing well, and trusting in God's wonderful plan for him!
They have also taken the nasal cannula off for now to see how he does without it. They had weaned him down to a very very low flow, and he was doing fine, but whenever he took a bottle, he needed extra oxygen to help him out as he worked on breathing and eating at the same time. So we will see how he does. They may need to put it back on if he is not able to eat and gain weight like he has been.
Also, he is up to three bottle feedings a day (out of eight feedings). Most of the time, he does really well, and drinks all or almost all of it (he gets 60 ml of milk every three hours and often drinks at least 45-50 on his own before the remainder goes in the feeding tube). I was able to feed him yesterday, and I can definitely tell a huge improvement. He is getting more coordinated, and is learning not to take things too fast. He will chug a few sips, then take a few deep breaths, then drink some more. If he seems like he is still able to do this well without his cannula, they may start to increase his bottle feedings this week. We're certainly hopeful!
Thank you all so very much for your prayers and encouragement. We are so thankful that our son is doing well, and trusting in God's wonderful plan for him!
Thursday, January 7, 2010
Endurance
These past couple of months have been an emotional roller coaster. Some days are good, some days are bad, but to be honest, recently I've had some of the hardest yet.
For some reason, even though no doctor ever gave me any indication of this, I never really thought my son would be in the hospital this long. We've always been told, "Usually babies need to stay until around their due date." But I have heard so many stories, and seen so many other babies come and go, that I thought, "Surely he will be coming home the first or second week of January." On the good days, I would try to calculate the day he might be coming home. On the bad days, I would think he wasn't making any progress at all. But I never really thought he would be in the hospital this long. Not really. At first, the hope was that he would be home for Christmas. Then, maybe by the end of the year. Then, hoping he would be home for my birthday (January 9th). One by one, I had to come to terms with the fact that he would not make any of these dates.
And now? Well, now I am not even sure if he will be home by his due date (January 30th). It's too soon to tell I suppose, but I will not be surprised if he doesn't make that date either.
But it's ok. Because I am learning endurance.
en-dur-ance : noun; the ability or strength to continue to last, especially despite fatigue, stress, or other adverse conditions; stamina.
James 1:3-4 states, "For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing." Every trial I face allows me to build endurance. Allows me to grow closer to God, and learn greater dependence on Him. I've known this, but as I have been studying this passage over the past few days, I'm beginning to understand it better.
I was driving home the other day, after a particularly hard night at the hospital, and I began to pray and meditate on this passage. I was so frustrated that my son was still in the hospital, with seemingly no end in sight. I was so tired of going through all the "what if's." So tired of thinking he was getting closer to coming home, only to be disappointed. Suddenly, it was as if I "got it." I felt like God was saying, "Bethany, how can you learn endurance if you never face anything you have to endure?" You see, I have spent so much time focusing on "when will he come home, when will he finally come home?" that I have not been fully submitting to God's timing. I've tried, and I've prayed, but have not truly allowed myself to give all the worrying and planning over to God. Not completely, anyway.
So how much longer will we have to endure? I don't know. But I have a peace in my heart that I had not fully felt before. No more wrestling with God over what His plan is, or what I think it should be. No more attempting to calculate when this journey will end based on my preferences and my timing. No, just patiently enduring, waiting on the Lord. Praising Him for this season of trial and growth, a season that I have never known before.
For some reason, even though no doctor ever gave me any indication of this, I never really thought my son would be in the hospital this long. We've always been told, "Usually babies need to stay until around their due date." But I have heard so many stories, and seen so many other babies come and go, that I thought, "Surely he will be coming home the first or second week of January." On the good days, I would try to calculate the day he might be coming home. On the bad days, I would think he wasn't making any progress at all. But I never really thought he would be in the hospital this long. Not really. At first, the hope was that he would be home for Christmas. Then, maybe by the end of the year. Then, hoping he would be home for my birthday (January 9th). One by one, I had to come to terms with the fact that he would not make any of these dates.
And now? Well, now I am not even sure if he will be home by his due date (January 30th). It's too soon to tell I suppose, but I will not be surprised if he doesn't make that date either.
But it's ok. Because I am learning endurance.
en-dur-ance : noun; the ability or strength to continue to last, especially despite fatigue, stress, or other adverse conditions; stamina.
James 1:3-4 states, "For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing." Every trial I face allows me to build endurance. Allows me to grow closer to God, and learn greater dependence on Him. I've known this, but as I have been studying this passage over the past few days, I'm beginning to understand it better.
I was driving home the other day, after a particularly hard night at the hospital, and I began to pray and meditate on this passage. I was so frustrated that my son was still in the hospital, with seemingly no end in sight. I was so tired of going through all the "what if's." So tired of thinking he was getting closer to coming home, only to be disappointed. Suddenly, it was as if I "got it." I felt like God was saying, "Bethany, how can you learn endurance if you never face anything you have to endure?" You see, I have spent so much time focusing on "when will he come home, when will he finally come home?" that I have not been fully submitting to God's timing. I've tried, and I've prayed, but have not truly allowed myself to give all the worrying and planning over to God. Not completely, anyway.
So how much longer will we have to endure? I don't know. But I have a peace in my heart that I had not fully felt before. No more wrestling with God over what His plan is, or what I think it should be. No more attempting to calculate when this journey will end based on my preferences and my timing. No, just patiently enduring, waiting on the Lord. Praising Him for this season of trial and growth, a season that I have never known before.
"He put a new song in my mouth,
a song of praise to our God.
Many will see and fear,
and put their trust in the LORD." Psalm 40:3
a song of praise to our God.
Many will see and fear,
and put their trust in the LORD." Psalm 40:3
Wednesday, January 6, 2010
Tuesday, January 5, 2010
A Little Late
Even though my daughter's birthday was a couple weeks ago, I still want to share some pictures from the big day, because she is so gosh darn cute.
It was a simple family affair. Just mom and dad, a few presents, and one delicious cake. She was a little unsure of the cake at first, but don't worry, once she realized she was allowed to chow down, she did some major damage!
Monday, January 4, 2010
Bring the Rain
It has been almost two months since my son was born. 54 days to be exact. (But who's counting, right?). And he is still in the hospital. He still has moments when he struggles to breathe. The holes in his heart are still open. There are constantly ups and downs. I have tried to stay strong and stand firm in what I KNOW is the truth: God is in control of this situation, and will heal my son in His time. I have tried to be patient, but I am not naturally a patient person, so this is a challenge. I have tried, but I am not perfect. Pretty far from it, in fact.
And so, I have had moments where I have not handled this all that well. Thankfully, I serve a loving and forgiving God, and I am able to humbly come before Him and seek forgiveness. Then I get up, brush myself off, and try again. I recently came upon this quote from Brother Yun in his book, The Heavenly Man. I have not actually read the book, but thought this was a powerful quote:
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain,
But if that's what it takes to praise You
Jesus, bring the rain
And so, I have had moments where I have not handled this all that well. Thankfully, I serve a loving and forgiving God, and I am able to humbly come before Him and seek forgiveness. Then I get up, brush myself off, and try again. I recently came upon this quote from Brother Yun in his book, The Heavenly Man. I have not actually read the book, but thought this was a powerful quote:
"We shouldn't pray for a lighter load to carry, but a stronger back to endure! Then the world will see that God is with us, empowering us to live in a way that reflects his love and power." Brother Yun, The Heavenly Man
This challenged me. There are days when I do not think I can endure anymore, but the Lord renews my strength. Somehow, I make it through each day, and even during the worst days, I am still able to praise God. But am I living in a way that others see this strength in me? A strength that is not my own, but wholly and fully from God? I hope so. Yes, some days, I fail miserably. I get frustrated, try and take matters into my own hands, act rude to the people I love. I could go on and on, unfortunately. But all I can do is ask for forgiveness, and start each new day afresh. Psalm 51 states:
Create in me a clean heart, O God,
And renew a steadfast spirit within me.
Do not cast me away from Your presence
And do not take Your Holy Spirit from me.
Restore to me the joy of Your salvation
And sustain me with a willing spirit.
Then I will teach transgressors Your ways,
And sinners will be converted to You. (v. 10-13)
And renew a steadfast spirit within me.
Do not cast me away from Your presence
And do not take Your Holy Spirit from me.
Restore to me the joy of Your salvation
And sustain me with a willing spirit.
Then I will teach transgressors Your ways,
And sinners will be converted to You. (v. 10-13)
My prayer each and everyday is that God would give me the strength to endure whatever comes my way in this life, and that through life's trials, people would see the amazing God that I serve. Would see the amazing miracles that God is capable of. Because I do not make it through each day by my own doing, in my own strength. It is completely, 100% God. Shortly after my son was born, I was expressing to a friend my struggles to somehow find some sort of balance in my life through all this, and she said, "Let God walk with you...no, walk FOR you."
One of my very favorite songs is Bring the Rain, by Mercy Me. If you really hear the lyrics, it can be a hard song to sing. A hard prayer to pray. But if God needs me to endure trials and suffering in order that His will be done, and His name glorified, I am ready and willing.
I can count a million times
People asking me how I
Can praise You with all that I've gone through.
The question just amazes me.
Can circumstances possibly
Change who I forever am in You?
Maybe since my life was changed
Long before these rainy days,
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm.
But instead, I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above,
Because You are much greater than my pain.
You who made a way for me
By suffering, Your destiny.
So tell me, what's a little rain?
So I pray
People asking me how I
Can praise You with all that I've gone through.
The question just amazes me.
Can circumstances possibly
Change who I forever am in You?
Maybe since my life was changed
Long before these rainy days,
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm.
But instead, I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above,
Because You are much greater than my pain.
You who made a way for me
By suffering, Your destiny.
So tell me, what's a little rain?
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain,
But if that's what it takes to praise You
Jesus, bring the rain
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