Thank you, thank you, thank you for your thoughts and prayers! We escaped again! That isn't to say I don't have to be admitted in the next week, but we were happy to receive the 'get of jail free card'. Last night I had another steroid shot. These make me VERY hyper and unable to sleep [Similar to the B12 shots I had to take in Wichita Falls - for those of you witnesses]. We had an ultrasound and Aaron's amniotic fluid levels had doubled. The BASIC explanation for this change, from what I understand from our specialists here and in Houston, is that we are a hybrid case of SIUGR and TTTS. I think I discussed TTTS a little in my first post. Identical twins with a shared placenta (this is our case) share vascular connections that connect the boys through the placenta. The vascular connections allow blood and amniotic fluid to shift back and forth between each twin. There is typically what they call a Donor twin (Aaron) and a Recipient twin (James). Thursday James had a lot of amniotic fluid and Aaron had very little. On Friday there was a shift of the fluid from James back to Aaron. We are kind of a strange case because the SIUGR is most definitely present, but so is this TTTS well. The two diagnoses are considered cousins in the Maternal Fetal Medicine world.
I have to say that all of our physicians have been wonderful and very knowledgeable. We are blessed to be in a location with a level 3 NICU and with a group of Maternal Fetal Physicians (perintologists). Our hospital serves all of the active duty military and dependents giving birth in the San Antonio area. San Antonio has one of the largest concentrated military populations. It amazes me that we could have been assigned anywhere, but God's plan was to put us near my family and near our best access to care. We are very blessed.
The plan is to go in again on Monday, and possibly everyday to every other day next week. I go with my bags packed each time, and depending on the circumstances may be admitted. It is still our intention to take the pregnancy out as far as we can. 27 and 28 weeks is MUCH better than 26 weeks. We will see. I am on modified bed rest.
My mother has been a tremendous help. I was contracting yesterday morning and asked her to come over at 7 am just in case. I was a little dehydrated; my contractions stopped by 9am. My parents were gracious enough to take Hannah yesterday evening. Since I was not admitted last night, Cory and I had a glorious date. I was very blessed by our time. The steroids had me very animated; my brain moves a mile a minute. I pretty much talked his ear off and was in a jovial state.
I have learned so much in the last 8 weeks. At my best (which I am not always at), I try to see the blessings that we are reaping during this time. Really, there are quite a few. I am thankful to the Lord that Cory and I have really leaned on each other through this time and have been brought so close. The "trauma" of the events has cleaned the tarnish of all of the petty things that occur in everyday life; revealing the deep love and respect I have always had for him. Amazingly, all hurt and hang ups fall away and we are left with what we started as. We have realized that SO many things from day to day life don't matter. Basically you can say that grace and respect have abounded.
We will keep you posted. I will leave with a quote Den, Cory's dad, read me 4 weeks or so ago. It was also my scripture for the day from the sweet devotional that our dear friends from California, Ryan and Jenna, sent to us.
"We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts." Romans 5:3-5
Saturday, February 28, 2009
Thursday, February 26, 2009
NICU Life on the horizon
We had another ultrasound today and it was not very good. Aaron had very low fluid in his amniotic sac. Additionally, his heart is enlarged and the walls are thickening. Basically his heart is working overtime to pump blood since he has reverse cord flow, which means the heart failure is progressing. I had my first round of steroids today and go in for my second round tomorrow. Steroids have shown to help mature the lungs and reduce brain hemorrhages in premature babies. Studies also show that the steroids will probably not help Aaron due to his small size and immaturity. After my round of steroids tomorrow night, I will have another ultrasound. Depending on what is found, I may be admitted for hospital bed rest. This way I can be monitored daily and available C-section if things change suddenly.
We are grateful to have come this far. Aaron has put up a good fight and that may continue. Our specialists will be surprised if we make it two more weeks without Aaron's health going further down hill forcing a C-section. We have surprised them thus far, so only the Lord knows! Thank you so much for your prayers and thoughtfulness.
It has been hard the past three weeks and some part of me will be relieved when the pregnancy is over. With all of that said, we are pretty calm. Everything is in the Lord's hands and we know everythign will be used for good in the long run. I feel like we are doing well considering the circumstances, but continue to pray for strength and steadfastness. We are hopeful for defying the odds, but aware that it may not be His plan.
We have to prepare for our upcoming life in the NICU. There is no doubt we will have ups and downs after the births. We have been told not to anticipate taking the boys home before June and perhaps longer. Please pray that we have the Lord's wisdom and discernment; there may be difficult choices on the road ahead. If admitted, I may see if Cory will post. My biggest concern is that our boys will suffer; please pray that God's Grace covers them. My mother and Cory will also need prayer being that they will be working overtime to care for Hannah and accomplish their daily tasks. Please pray also that Hannah will be ok in my absense (I am sure she will :).
We are grateful to have come this far. Aaron has put up a good fight and that may continue. Our specialists will be surprised if we make it two more weeks without Aaron's health going further down hill forcing a C-section. We have surprised them thus far, so only the Lord knows! Thank you so much for your prayers and thoughtfulness.
It has been hard the past three weeks and some part of me will be relieved when the pregnancy is over. With all of that said, we are pretty calm. Everything is in the Lord's hands and we know everythign will be used for good in the long run. I feel like we are doing well considering the circumstances, but continue to pray for strength and steadfastness. We are hopeful for defying the odds, but aware that it may not be His plan.
We have to prepare for our upcoming life in the NICU. There is no doubt we will have ups and downs after the births. We have been told not to anticipate taking the boys home before June and perhaps longer. Please pray that we have the Lord's wisdom and discernment; there may be difficult choices on the road ahead. If admitted, I may see if Cory will post. My biggest concern is that our boys will suffer; please pray that God's Grace covers them. My mother and Cory will also need prayer being that they will be working overtime to care for Hannah and accomplish their daily tasks. Please pray also that Hannah will be ok in my absense (I am sure she will :).
Wednesday, February 18, 2009
Still going
There is not much new to report, which is good. We have had two ultrasounds since the last post. Things pretty much looked the same. Our last u/s was a growth scan. James was measuring 1 lb 10 oz (which is big for his gestational age) and Aaron was measuring 12 oz. Aaron is still growing which is good. If we go another 4 weeks and the trend continues he will be a pound. 500 grams (or 1 pound) isn't great, but it is a huge milestone for a restricted growth baby. It gives Aaron a shot at survival outside the womb. Hopefully we will go farther than 29 weeks, and he can grow a little more. I may receive steroid shots in the next few weeks. The shots are generally administered if they think delivery may be close. The steroids will mature Jame's lungs (by about a week) and prepare him for delivery. The steroids historically have not shown to help babies as small as Aaron, but who knows? If we recieve the shots and go two more weeks without delivery we can recieve them a second time.
We are blessed to be held steady by God's grace and appreciate your many prayers! We have not had a chance to meet with the neonatologist, but hopefully by next post. Our next ultrasound is this coming Monday.
The photos on the right our from our last ultrasound (24 weeks, 4 days). They appear to look very 'Middel'. We are able to see a little more on James since he has more than a pound on Aaron, but I would assume they look the same since they are identical twins.
We are blessed to be held steady by God's grace and appreciate your many prayers! We have not had a chance to meet with the neonatologist, but hopefully by next post. Our next ultrasound is this coming Monday.
The photos on the right our from our last ultrasound (24 weeks, 4 days). They appear to look very 'Middel'. We are able to see a little more on James since he has more than a pound on Aaron, but I would assume they look the same since they are identical twins.
Tuesday, February 10, 2009
All here...on the roller coaster
Where should I start? First I should thank everyone for praying for us. There are many people that I don't even know praying for us. We are grateful for them and for all of you that we know. We have definitely felt lifted up in prayer. The last two weeks have been difficult to endure, but I am sure good will come out of it later. I should also say that James and Aaron are both still with us and for that we are truly blessed.
Last Monday we went to our ultrasound. We were told we had reverse cord flow, that Aaron was more discordant in size than previously (50% smaller than James), and that he had fluid around his heart and chest wall. Our doctor's impression was that Aaron was likely in the early stages of heart failure. We were told he could possibly worsen and pass away within a few days to 1.5 weeks. It was recommended that we consider cord occlusion (cut his umbilical cord) to decrease the likelihood that Aaron's death would hurt James. I could spend a lot of time going into detail about how I/we felt, but obviously we were devastated.
We were sent to specialists in Houston on Wednesday; spending the day and a half before trying to prepare for the worst. We were not necessarily committed to a procedure. We did have to consider that if things were as bad as we were told, we had to consider the life of our other son James and the impact the death of Aaron would have on him. In Houston, we had our ultrasound and Aaron was moving up a storm. They couldn't get all of their measurements (partly because of size and partly because of movement). The doctor examined him and said, "Well, we should watch and wait." I shot right up and asked, "What?" We had a consultation and were told Aaron appears to be getting what he needs to maintain so much movement and there was no way they could get approval for cord occlusion even if we wanted it. We were told that things don't look good for Aaron since it is questionable weather or not in four weeks he will even weigh a pound. We were also told that any procedure would jeopardize James' life almost as much as not doing anything at all. Cory and I have been under the assumption (as it has been portrayed) that if Aaron passes, James has a certain outcome of death or severe neurological damage. Apparently this is the case with 25% of SIUGR, but not 75%. We left the appointment relieved and pretty happy. In most cases being told your son probably won't live wouldn't make you happy, but at least we were not forced into a position to choose to end our baby's life prematurely.
Needless to say it has taken me about five days to get past this and be in a place that I can say is positive. When I knew we had pretty serious problems, I prayed "Lord we can do this together, I am not going to complain, but my one request is that we do not have to be in a position of choosing life or death for any of my children (of course I begged the Lord for the lives of both of my unborn children to be spared)". This past Monday, we went to our ultrasound and Aaron's condition had not progressed. The Lord did answer my prayer because this is the last week that any procedures can be done. I cannot tell you HOW thankful we are.
This Thursday we have another ultrasound and a meeting with the neonatologist to come up with a game plan. Due to the complications, at some point conditions outside the womb will likely be more favorable than inside. Aaron's condition will be evaluated and conditions will be set determining a threshold for delivery. Please pray that we have this luxury (I could go into labor next week). Both of the boys need to develop as much as possible before entering our world to have the best shot of survival. I anticipate a 28 week goal, but we will know more on Thursday.
We are doing pretty well. Cory is very busy with work, but still helps out quite a bit. My parents have been helping us. Cory's parents will be in town for support and a pre-planned "Hannah fix" this week. Thankfully I feel strengthened by the Lord, and there is no other way to explain it. Yesterday I didn't think I could show up to another ultrasound fearing bad news. I definitely hit "I don't know how much more I can take". All that being said, today is a 180. I am going to be positive and continue to pray that we crush the odds. Today I started to get excited that we could see our boys in as little as a month. Obviously I don't want them to come out sooner than what is safe, but I look forward to meeting them.
Thank you for your prayers and support. I can't imagine where we would be if God wasn't with us every step of our journey. Much Love,Laura
Last Monday we went to our ultrasound. We were told we had reverse cord flow, that Aaron was more discordant in size than previously (50% smaller than James), and that he had fluid around his heart and chest wall. Our doctor's impression was that Aaron was likely in the early stages of heart failure. We were told he could possibly worsen and pass away within a few days to 1.5 weeks. It was recommended that we consider cord occlusion (cut his umbilical cord) to decrease the likelihood that Aaron's death would hurt James. I could spend a lot of time going into detail about how I/we felt, but obviously we were devastated.
We were sent to specialists in Houston on Wednesday; spending the day and a half before trying to prepare for the worst. We were not necessarily committed to a procedure. We did have to consider that if things were as bad as we were told, we had to consider the life of our other son James and the impact the death of Aaron would have on him. In Houston, we had our ultrasound and Aaron was moving up a storm. They couldn't get all of their measurements (partly because of size and partly because of movement). The doctor examined him and said, "Well, we should watch and wait." I shot right up and asked, "What?" We had a consultation and were told Aaron appears to be getting what he needs to maintain so much movement and there was no way they could get approval for cord occlusion even if we wanted it. We were told that things don't look good for Aaron since it is questionable weather or not in four weeks he will even weigh a pound. We were also told that any procedure would jeopardize James' life almost as much as not doing anything at all. Cory and I have been under the assumption (as it has been portrayed) that if Aaron passes, James has a certain outcome of death or severe neurological damage. Apparently this is the case with 25% of SIUGR, but not 75%. We left the appointment relieved and pretty happy. In most cases being told your son probably won't live wouldn't make you happy, but at least we were not forced into a position to choose to end our baby's life prematurely.
Needless to say it has taken me about five days to get past this and be in a place that I can say is positive. When I knew we had pretty serious problems, I prayed "Lord we can do this together, I am not going to complain, but my one request is that we do not have to be in a position of choosing life or death for any of my children (of course I begged the Lord for the lives of both of my unborn children to be spared)". This past Monday, we went to our ultrasound and Aaron's condition had not progressed. The Lord did answer my prayer because this is the last week that any procedures can be done. I cannot tell you HOW thankful we are.
This Thursday we have another ultrasound and a meeting with the neonatologist to come up with a game plan. Due to the complications, at some point conditions outside the womb will likely be more favorable than inside. Aaron's condition will be evaluated and conditions will be set determining a threshold for delivery. Please pray that we have this luxury (I could go into labor next week). Both of the boys need to develop as much as possible before entering our world to have the best shot of survival. I anticipate a 28 week goal, but we will know more on Thursday.
We are doing pretty well. Cory is very busy with work, but still helps out quite a bit. My parents have been helping us. Cory's parents will be in town for support and a pre-planned "Hannah fix" this week. Thankfully I feel strengthened by the Lord, and there is no other way to explain it. Yesterday I didn't think I could show up to another ultrasound fearing bad news. I definitely hit "I don't know how much more I can take". All that being said, today is a 180. I am going to be positive and continue to pray that we crush the odds. Today I started to get excited that we could see our boys in as little as a month. Obviously I don't want them to come out sooner than what is safe, but I look forward to meeting them.
Thank you for your prayers and support. I can't imagine where we would be if God wasn't with us every step of our journey. Much Love,Laura
Saturday, January 24, 2009
01.24.2009
It is 5:30 am on a Saturday morning. I woke up about half an hour ago to the boys moving around in my tummy. With my first pregnancy I would be rather annoyed that I was missing sleep, but these days I find myself celebrating the small victories. I feel like “Yes! They are moving. Praise God!”
It was determined this week that we most likely have Selective Interuterine Growth Restriction (SIUGR). Our small son, Aaron, does not have the access to the placenta that, James (our “normal" guy) has. Therefore he does not receive as much nourishment. In extreme cases, the smaller twin dies in-utero before the babies can be safely delivered. Since I have one placenta (many identical twins share the placenta), the boys share many veins that connect the two of them. Historically as the smaller baby develops his cord blood flow generally slows, reverses or stops as the babies grow older. If our case becomes extreme, we have been told that if Aaron passes away, then James will most likely die as well or have severe neurological damage. This is due to the shared vasculature that connects the boys’ blood supply. If one passed away, it leaves the healthy twin to pump blood for two babies. At least this is my understanding, there could be more or less to this.
We had two ultrasounds this week. I will tell you about the second (which occurred on Friday) as the results were the same as the first, but my counseling was more hopeful with the second physician. Aaron, our smaller son, was moving up a storm and producing more amniotic fluid than ever (even more than Tuesday). The amniotic fluid is a sign his kidneys are working and he is urinating. He does have “abnormal” cord blood flow. It may be due to his small size (I was told he looks about 17 weeks – I am 21 weeks along) or it may just be abnormal. Anyway, the victory we are clinging to is that he is currently a medical anomaly. Normally there is low movement to absent movement and low urine output before there is low cord blood flow. I was told our little guy is doing everything he can to survive and say I am fighting here. Our physician said that if this baby has compromised blood flow, you would know it!
Currently, our goal (which seems crazy under normal circumstances) is to make it as far as we can into the pregnancy before delivery (right now we are shooting for 28 weeks and hopefully farther). I am 21 weeks and Lord willing we will make it past 30 weeks. Our physician mentioned that it is possible to deliver James and then leave Aaron inside of me for a month or two. I have no idea if this will be a real option when the time comes, but it is hopeful that it may be a possibility.
Right now we are celebrating the small victories and hoping for more. I am very aware that the next ultrasound could bear bad news, but it doesn’t help to think about it. I am trying to enjoy our boys every day, even though they are inside of me. Aaron is much more active and aggressive than James. When we see them on ultrasound they are often punching each other. When we went to the specialist in Houston, James was sucking his thumb. Hannah is the greatest gift of distraction. She is walking and full of things to say, that we actually understand! At times I have cried out of fear and sadness and she has brought me a pacifier or done her first somersault. Frankly all of this has helped me appreciate life more. I appreciate Cory and our sweet girl more than ever. I am truly thankful to the Lord for both of them. Hannah brings us such joy. I have been appreciating things I have previously overlooked and receiving great joy from them. This week I am trying to commit our children to the Lord. They are gifts from Him (Ps. 127:3). This is easily done in the absence of fear. In fear, my tendency is to wrap my arms around whatever I fear; not commit it to God, and try to do what I can to fix it. I was lead to 1 Samuel; reading about Hannah and how she was barren for so long. When she conceived Samuel, she freely gave him over to the Lord, literally to Eli, to be a priest and not live with her as a normal child would. When she gave him to Samuel she said, “27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD." And he worshiped the LORD there (1 Samuel 1:27-28).
Our parents have been very supportive from a far and right here. My mother has been cleaning our house and watching Hannah. My parents have even taken her for a couple of nights so we could travel to Houston to see a specialist or specialist and so we can have some 'Cory and Laura time'. We have had people from church that we do not know or barely know bring us meals to help out.
Thank you for your prayers and encouragement. I find myself, a doer, in a time where I can only relax and let others help me. I cannot save my boys or insure their future, but I can pray and there is power in prayer to the Lord.
It was determined this week that we most likely have Selective Interuterine Growth Restriction (SIUGR). Our small son, Aaron, does not have the access to the placenta that, James (our “normal" guy) has. Therefore he does not receive as much nourishment. In extreme cases, the smaller twin dies in-utero before the babies can be safely delivered. Since I have one placenta (many identical twins share the placenta), the boys share many veins that connect the two of them. Historically as the smaller baby develops his cord blood flow generally slows, reverses or stops as the babies grow older. If our case becomes extreme, we have been told that if Aaron passes away, then James will most likely die as well or have severe neurological damage. This is due to the shared vasculature that connects the boys’ blood supply. If one passed away, it leaves the healthy twin to pump blood for two babies. At least this is my understanding, there could be more or less to this.
We had two ultrasounds this week. I will tell you about the second (which occurred on Friday) as the results were the same as the first, but my counseling was more hopeful with the second physician. Aaron, our smaller son, was moving up a storm and producing more amniotic fluid than ever (even more than Tuesday). The amniotic fluid is a sign his kidneys are working and he is urinating. He does have “abnormal” cord blood flow. It may be due to his small size (I was told he looks about 17 weeks – I am 21 weeks along) or it may just be abnormal. Anyway, the victory we are clinging to is that he is currently a medical anomaly. Normally there is low movement to absent movement and low urine output before there is low cord blood flow. I was told our little guy is doing everything he can to survive and say I am fighting here. Our physician said that if this baby has compromised blood flow, you would know it!
Currently, our goal (which seems crazy under normal circumstances) is to make it as far as we can into the pregnancy before delivery (right now we are shooting for 28 weeks and hopefully farther). I am 21 weeks and Lord willing we will make it past 30 weeks. Our physician mentioned that it is possible to deliver James and then leave Aaron inside of me for a month or two. I have no idea if this will be a real option when the time comes, but it is hopeful that it may be a possibility.
Right now we are celebrating the small victories and hoping for more. I am very aware that the next ultrasound could bear bad news, but it doesn’t help to think about it. I am trying to enjoy our boys every day, even though they are inside of me. Aaron is much more active and aggressive than James. When we see them on ultrasound they are often punching each other. When we went to the specialist in Houston, James was sucking his thumb. Hannah is the greatest gift of distraction. She is walking and full of things to say, that we actually understand! At times I have cried out of fear and sadness and she has brought me a pacifier or done her first somersault. Frankly all of this has helped me appreciate life more. I appreciate Cory and our sweet girl more than ever. I am truly thankful to the Lord for both of them. Hannah brings us such joy. I have been appreciating things I have previously overlooked and receiving great joy from them. This week I am trying to commit our children to the Lord. They are gifts from Him (Ps. 127:3). This is easily done in the absence of fear. In fear, my tendency is to wrap my arms around whatever I fear; not commit it to God, and try to do what I can to fix it. I was lead to 1 Samuel; reading about Hannah and how she was barren for so long. When she conceived Samuel, she freely gave him over to the Lord, literally to Eli, to be a priest and not live with her as a normal child would. When she gave him to Samuel she said, “27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD." And he worshiped the LORD there (1 Samuel 1:27-28).
Our parents have been very supportive from a far and right here. My mother has been cleaning our house and watching Hannah. My parents have even taken her for a couple of nights so we could travel to Houston to see a specialist or specialist and so we can have some 'Cory and Laura time'. We have had people from church that we do not know or barely know bring us meals to help out.
Thank you for your prayers and encouragement. I find myself, a doer, in a time where I can only relax and let others help me. I cannot save my boys or insure their future, but I can pray and there is power in prayer to the Lord.
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