Thank you for your prayers! We arrived in Cincinnati around 8 this morning (1/31). We had great weather and traffic our entire 700 miles and Naomi did excellent overnight. The adults are all a little tired but we know that we can rest today!
Shortly after we arrived today I received a phone call from the hospital giving me a detailed itinerary for tomorrow. Here is what tomorrow looks likes:
8:00 a.m. Register @ the hospital
8:30 a.m. Echocardiogram on the healthy baby
10:15 a.m. MRI
1:00 p.m. Ultrasound
3:00 p.m. Genetics Meeting (I did ask about this meeting since I was unaware that we had it. Our healthy baby carries an increased risk for a chromosomal defect so we
need to sit down and discuss family history)
3:30 p.m. Meeting with Nurses
4:00 p.m. Team Meeting with Doctor and Surgeon - I would ask specifically for prayer during this time as it will be the moment of truth about how we will proceed.
As you can see it will be a full day! Please pray as you feel lead. Pray specifically for Naomi and my mom, Darcie as well since they will be trying to stay busy while Drew and I are away.
Thank you everyone. We have been blown away by the prayer and financial support that we have received. God is good.
Our Family
Baby Levi
Monday, January 31, 2011
Friday, January 28, 2011
Ultrasound - 1/28 (We are traveling to Ohio)
Simply put today has been a WHIRLWIND! We had our regularly scheduled ultrasound this afternoon and it was not the news we were hoping for. The Acardiac (non-living) baby has grown and is now 50% of the healthy baby's weight. While the healthy little boy is still doing well (Praise God) there is concern that we are beginning to see a pattern of growth. Initially our Dr. was going to let us go home and have me come back in a week; however, after consulting with doctors from Cincinnati Children's Hospital Medical Center (CCHMC) it has been determined that the best course of action is to have us travel to Cincinnati to undergo a round of tests to determine the next course of action. CCHMC is our destination due to their extensive work with Acardiac twin cases and their experience with the intervention procedure entitled Radio-Frequency Ablation. We have procedures scheduled all-day on Tuesday (5/1) at CCHMC. These procedures will include an ultrasound to measure both babies and to record their growth, an Echocardiagram to look at our healthy guys heart and and Fetal MRI to take an even closer look at how our healthy boy is doing. Drew and I will then meet with a Maternal Fetal Medicine doctor and a surgeon to develop a plan. There are still many unknowns! The result of these tests could be an immediate Radio-Frequency Ablation (by immediate, I mean most likely Wednesday). The results could also end in us needing to stay in OH for an extended period to be monitored. It seems unlikely at this point that we will be sent home with no intervention; however, we have been told this is a possibility as well.
I had the opportunity to speak to a nurse concerning how things would progress if I needed the Radio-Frequency Ablation Procedure. She said most likely I would receive the procedure on Wednesday (2/2). After the procedure I would be observed for 6 hours and if all looked well I would be released to spend the evening with my family in OH. I would then come in for a check-up on Thursday and if everything continued to look good, I could go home as early as Thursday evening. There are risks; however with the procedure. My current Dr. has stated that there is a 30% chance of my membranes being ruptured (water broken). If this happens we will not leave Cincinnatti for many weeks. Essentially I would be hospitalized until the baby came and then we would be at the hospital until he was cleared to leave. This is the WORST case scenario. There is also risk of "residual blood flow" between the babies which would mean extending our stay a little longer for further monitoring. At this point we have been told to plan on a week in Cincinnati.
The developing plan is that we will travel to OH overnight on Sunday. My mom will be coming along to care for Naomi. We are still working on where we will be staying.
I will be honest that today has been tough. We KNOW that God's hand is on this pregnancy but it is hard is much easier to say that we trust Him than to live our that trust in Him. Our heart is heaviest right now for Naomi and how this impacts her. Naomi has not been known to be a flexible traveler. The nurse informed me today that Naomi is not allowed on the Fetal Medicine Floor due to it being cold and flu season. We also know that if our baby boy is born early, Naomi is not allowed in the NICU. It is hard to understand how to balance being a parent to both our children. Our heart is also concerned for our little guy. We understand that he is at risk.To be honest; however, I have felt an immense peace that he will live!
Please pray for us! I am listing several specific prayer requests below; however, please pray as the Spirit leads!
I had the opportunity to speak to a nurse concerning how things would progress if I needed the Radio-Frequency Ablation Procedure. She said most likely I would receive the procedure on Wednesday (2/2). After the procedure I would be observed for 6 hours and if all looked well I would be released to spend the evening with my family in OH. I would then come in for a check-up on Thursday and if everything continued to look good, I could go home as early as Thursday evening. There are risks; however with the procedure. My current Dr. has stated that there is a 30% chance of my membranes being ruptured (water broken). If this happens we will not leave Cincinnatti for many weeks. Essentially I would be hospitalized until the baby came and then we would be at the hospital until he was cleared to leave. This is the WORST case scenario. There is also risk of "residual blood flow" between the babies which would mean extending our stay a little longer for further monitoring. At this point we have been told to plan on a week in Cincinnati.
The developing plan is that we will travel to OH overnight on Sunday. My mom will be coming along to care for Naomi. We are still working on where we will be staying.
I will be honest that today has been tough. We KNOW that God's hand is on this pregnancy but it is hard is much easier to say that we trust Him than to live our that trust in Him. Our heart is heaviest right now for Naomi and how this impacts her. Naomi has not been known to be a flexible traveler. The nurse informed me today that Naomi is not allowed on the Fetal Medicine Floor due to it being cold and flu season. We also know that if our baby boy is born early, Naomi is not allowed in the NICU. It is hard to understand how to balance being a parent to both our children. Our heart is also concerned for our little guy. We understand that he is at risk.To be honest; however, I have felt an immense peace that he will live!
Please pray for us! I am listing several specific prayer requests below; however, please pray as the Spirit leads!
- Pray for good weather and safe travels.
- Pray for Naomi's sleep and feelings of security
- Pray that God will intervene and the doctors will be astounded (we will not give up belief that this could happen)
- Pray that we are able to have our baby in MN
- Pray for wisdom as we make decisions
- Pray for God's provision of miraculous peace and comfort and for us to be able to fully depend on Him to meet our every need
- Pray that God will be honored in every aspect of this entire situation
Tuesday, January 25, 2011
Ultrasound - 1/21
This ultrasound was a difficult one. I went in for my routine ultrasound and once again the Acardiac baby had grown. This was certainly not what I was hoping to hear. He is once again about 37% of the healthy baby's weight - a 9% jump from the week before. The doctor was not alarmed at this point. She emphasized that we need to keep going week by week.She reminded me that so far we have not gone beyond this precentage which makes predicting a pattern difficult. I did ask her at what percentage we would start to talk intervention and she said at 50% we would start to consider how to proceed.
Intervention essentially includes two options. Option 1 is a procedure in which a long needle would be inserted into the vein that is supplying blood between the two babies. The needle is then heated cauterizing the vein and stopping the flow of blood. For this procedure we would need to travel to OH. There is a 30% chance that the amniotic sac would be punctured during the procedure causing early delivery of our healthy guy. Due to the level of risk, this procedure is not an option once I reach 28 weeks due to the increased chance that a premature baby would survive.
Option 2 is early delivery.
I will admit that this day was a difficult one for me. I honestly believe that God's hand is on this child and that he will be born and he will live. What I question is when his due date will be. It is difficult for me to think of having a baby in the NICU and a little one at home. How does a mom balance life between the two? I am praying that God keeps this little one safe and sound in the womb as long as possible and that he gives our family strength to face whatever may come in the future. I especially pray for God's hand on Naomi as we face the unknown future.
There was good news at this appointment. Our healthy little guy is measuring about 5 days ahead of schedule which is GREAT. He is healthy. His hearbeat is normal and he is VERY active! At this time they think he weighs about 1 pound 5 ounces. This may be the one time I am grateful that BIG babies run on my side of the family : ).
Intervention essentially includes two options. Option 1 is a procedure in which a long needle would be inserted into the vein that is supplying blood between the two babies. The needle is then heated cauterizing the vein and stopping the flow of blood. For this procedure we would need to travel to OH. There is a 30% chance that the amniotic sac would be punctured during the procedure causing early delivery of our healthy guy. Due to the level of risk, this procedure is not an option once I reach 28 weeks due to the increased chance that a premature baby would survive.
Option 2 is early delivery.
I will admit that this day was a difficult one for me. I honestly believe that God's hand is on this child and that he will be born and he will live. What I question is when his due date will be. It is difficult for me to think of having a baby in the NICU and a little one at home. How does a mom balance life between the two? I am praying that God keeps this little one safe and sound in the womb as long as possible and that he gives our family strength to face whatever may come in the future. I especially pray for God's hand on Naomi as we face the unknown future.
There was good news at this appointment. Our healthy little guy is measuring about 5 days ahead of schedule which is GREAT. He is healthy. His hearbeat is normal and he is VERY active! At this time they think he weighs about 1 pound 5 ounces. This may be the one time I am grateful that BIG babies run on my side of the family : ).
ECHO - 1/19
I will be honest the ECHO was anxiety provoking for me! This was a moment of truth and everyone in the office seemed to be very focused on their job. I admire those who do this ultrasound work. The ECHO was simply amazing! It takes detailed pictures of each chamber, vein and artery of the babies heart! This is no small task when you have a little guy who likes to MOVE ALOT :) Our technician was WONDERFUL. You have to be quick with these little babies.
The ultrasound allows us to be cautiously hopeful. Overall our healthy boy is being really cooperative with this whole pregnancy. The left side of his heart is a little enlarged which demonstrates that it is working a little harder than it should. The cardiologist stated we will just need to keep a close eye on him. We now have two more appointments scheduled with her (February 16 and March 9). The plan at this point will be to see the perinatalogists weekly and the cardiologist every 3-4 weeks. Our insurance company is going to LOVE us!
We are trying to remain hopeful and praying that this is the extent of stress on our little one's heart!
The ultrasound allows us to be cautiously hopeful. Overall our healthy boy is being really cooperative with this whole pregnancy. The left side of his heart is a little enlarged which demonstrates that it is working a little harder than it should. The cardiologist stated we will just need to keep a close eye on him. We now have two more appointments scheduled with her (February 16 and March 9). The plan at this point will be to see the perinatalogists weekly and the cardiologist every 3-4 weeks. Our insurance company is going to LOVE us!
We are trying to remain hopeful and praying that this is the extent of stress on our little one's heart!
Ultrasound -1/14
Today I was taken a little offguard. After two weeks of GREAT reports today we heard the dreaded word: GROWTH! The little Acardiac twin had grown in the past week. This was a mixed report. While the nonliving twin had grown when they looked comparatively at the weight of the two babies the Acardiac twin had actually decreased to being only 28% of the healthy babies size. I rejoice in this fact but was also hoping that the Acardiac twin would stabilize.
Wednesday we go in for a ECHO ultrasound of the healthy baby and meet with a pediatric cardiologist. This will tell us if there is any evidence that the heart is being worked too hard.
Wednesday we go in for a ECHO ultrasound of the healthy baby and meet with a pediatric cardiologist. This will tell us if there is any evidence that the heart is being worked too hard.
Ultrasound - 1/7
In case people are wondering I have been backtracking a bit to get everyone caught up! I wanted to give people a peek into our journey. I am hoping by that by tomorrow I have brought everyone up-to-date and can start posting regularly on FRIDAYS since that is our ultrasound day :)
January 7th I was able to have my mom come with me to the ultrasound. This was a little gift since I am having to go in for so many! Grammy was able to see our healthy little boy. He even gave us a big yawn on the screen. This day the news continued to be good. There had been NO significant change in the Acardiac twin! Praise God.
January 7th I was able to have my mom come with me to the ultrasound. This was a little gift since I am having to go in for so many! Grammy was able to see our healthy little boy. He even gave us a big yawn on the screen. This day the news continued to be good. There had been NO significant change in the Acardiac twin! Praise God.
Monday, January 24, 2011
Ultrasound - 12/29
It had been one week since we had received the news about our baby boys and we were anxious to discover the results of this ultrasound. This day we had GOOD NEWS! The Acardiac twin had not grown. This is excellent news! The doc we saw today has seen a number of these pregnancies and feels confident that we have a good chance of carrying this baby to full term. This is WONDERFUL news considering that last week the prognosis we received was that we could expect to deliver baby by 36-37 weeks! Here are some of the other things we learned this week:
1) The Acardiac twin is about 36% of the weight of the healthy baby.
2) Most healthy babies become in danger of heart failure if the Acardiac twin reaches 70% of healthy babies weight.
3)The healthy baby will not experience long lasting heart damage.
This appointment has brought much peace! Praise God for his hand in this pregnancy.
1) The Acardiac twin is about 36% of the weight of the healthy baby.
2) Most healthy babies become in danger of heart failure if the Acardiac twin reaches 70% of healthy babies weight.
3)The healthy baby will not experience long lasting heart damage.
This appointment has brought much peace! Praise God for his hand in this pregnancy.
Saturday, January 22, 2011
Catalyst for Blog
In October our family discovered that we would be adding a new little person in the spring of 2011. Due to some confusion on the baby's due date we went to have a dating ultrasound. At this first ultrasound we were told two things of importance: First, the baby's estimated due date was May 21, 2011. Second, there was an abnormal mass discovered on my placenta that would require further examination. As you can imagine the second piece of the news we received was unsettling; however, at the time I was immersed in my internship and life was proceeding at a fast pace. Weeks went by and we did not give things another thought... after all, wouldn't my midwife call if there was something SERIOUS going on?
In early December, I went to see my midwife for a regularly scheduled appointment. At this appointment I discovered that due to an administration mix-up my midwife had never received the results of the dating ultrasound which had taken place 5 weeks earlier. Once we had the results in hand, I was told that I would need to receive a more detailed ultrasound. The midwife gave me a range of possible reasons for the mass and then referred me to North Memorial's perinatal department where I would be scheduled for a level 2 ultrasound.
One week later, I was getting to view our baby for the second time. This ultrasound was filled with both joy and a little trepidation. I had gone alone because at this point we still believed everything MUST be fine. Shortly after the ultrasound had begun my technician stated that she would need to go and speak to the Dr. I knew at this point something was not right. Upon her return I asked for whatever information she could give me. All she could say was that this was a twin pregnancy and that the Dr. would explain everything after the ultrasound was finished. I anxiously awaited the duration of the appointment while trying to enjoy the sight of my little baby BOY moving around and looking healthy to my untrained eye.
Once the pictures were done, I waited for the doctor to come in and review the results with me. This half hour wait was excruciatingly long! The doctor came in with a solemn face. She explained that this was indeed a identical twin pregnancy; however, the one baby (the mass on my placenta) was what the referred to as an Acardiac Twin. What does this mean? Essentially it means that this baby did not develop a heart. It also means that our twin boys our connect by a vein in the placenta. Our baby boy is pumping blood for his non-living brother. This can allow the Acardiac twin to continue to grow. The doctor explained that this was a complex situation. It places our healthy baby boy at risk for potential heart failure. So what was the game plan? I would be monitored weekly via ultrasound to keep an eye on our little one!
I would be lying if I was to say that this ultrasound was not emotionally draining. My midwife had prepared me (us) for the possibility that there would be a non-living twin which turned out to be a blessing. While, it was sad to learn that there had been another baby it has been an odd sense of loss because we never knew about him while he was alive! It was much harder to hear that our healthy baby boy was in real possible danger. So many questions abounded... What were our odds? What would this pregnancy look like? How do hold out hope and yet know there is a possibility of loss? Would we be the parents of a preemie? How would this affect our little guy in the long run if he made it? So many questions and so few answers. We were (and still are) truly living on a prayer.
Some of these questions have been answered in the weeks following this initial appointment. Some of these questions we still hold awaiting an answer. What we have discovered for certain since this initial diagnosis is that we serve a powerful, gracious and compassionate God and that He has given us a tremendous support network in our friends and family. We wanted to create a place where those around us could go and find out what the latest news on this little one is and where we can share our concerns and our joys as this pregnancy progresses.
In early December, I went to see my midwife for a regularly scheduled appointment. At this appointment I discovered that due to an administration mix-up my midwife had never received the results of the dating ultrasound which had taken place 5 weeks earlier. Once we had the results in hand, I was told that I would need to receive a more detailed ultrasound. The midwife gave me a range of possible reasons for the mass and then referred me to North Memorial's perinatal department where I would be scheduled for a level 2 ultrasound.
One week later, I was getting to view our baby for the second time. This ultrasound was filled with both joy and a little trepidation. I had gone alone because at this point we still believed everything MUST be fine. Shortly after the ultrasound had begun my technician stated that she would need to go and speak to the Dr. I knew at this point something was not right. Upon her return I asked for whatever information she could give me. All she could say was that this was a twin pregnancy and that the Dr. would explain everything after the ultrasound was finished. I anxiously awaited the duration of the appointment while trying to enjoy the sight of my little baby BOY moving around and looking healthy to my untrained eye.
Once the pictures were done, I waited for the doctor to come in and review the results with me. This half hour wait was excruciatingly long! The doctor came in with a solemn face. She explained that this was indeed a identical twin pregnancy; however, the one baby (the mass on my placenta) was what the referred to as an Acardiac Twin. What does this mean? Essentially it means that this baby did not develop a heart. It also means that our twin boys our connect by a vein in the placenta. Our baby boy is pumping blood for his non-living brother. This can allow the Acardiac twin to continue to grow. The doctor explained that this was a complex situation. It places our healthy baby boy at risk for potential heart failure. So what was the game plan? I would be monitored weekly via ultrasound to keep an eye on our little one!
I would be lying if I was to say that this ultrasound was not emotionally draining. My midwife had prepared me (us) for the possibility that there would be a non-living twin which turned out to be a blessing. While, it was sad to learn that there had been another baby it has been an odd sense of loss because we never knew about him while he was alive! It was much harder to hear that our healthy baby boy was in real possible danger. So many questions abounded... What were our odds? What would this pregnancy look like? How do hold out hope and yet know there is a possibility of loss? Would we be the parents of a preemie? How would this affect our little guy in the long run if he made it? So many questions and so few answers. We were (and still are) truly living on a prayer.
Some of these questions have been answered in the weeks following this initial appointment. Some of these questions we still hold awaiting an answer. What we have discovered for certain since this initial diagnosis is that we serve a powerful, gracious and compassionate God and that He has given us a tremendous support network in our friends and family. We wanted to create a place where those around us could go and find out what the latest news on this little one is and where we can share our concerns and our joys as this pregnancy progresses.
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