Two Whole Weeks - Ultrasound 2/25

Friday continued the EXCELLENT reports. Levi continues to do well. He is growing appropriately, his heart is strong, and he is a WIGGLE WORM! Malachi continued to show reduction in size and does NOT show any residual blood flow. God is good! For the first time in 10 weeks I was told I could go TWO WHOLE WEEKS between appointments. I am not sure what I will do... have a little party perhaps :)! Thank you for your continued prayers!

The beginning of a Spiritual Journey

"Whoever loves father or mother more than me is not worthy of me, and whoever loves son or daughter more than me in not worthy of me."

 Matthew 10:37

This was the verse which stuck out to me when doing my devotions in early January. I had read this verse before but during this reading I was particularly challenged. "Did I love Jesus more than my children?" As I prayed that morning I confessed to God and to myself that I sincerely doubted Jesus would win if I was faced with a choice between Him and my family (especially Drew or my kids). Then, in a moment of "insanity" I asked God to help teach me how to put him first... even before my children. Little did I know how God would grant this request!

Within the next three weeks, after reading these verses, Malachi (our Acardiac baby) began growing and eventually necessitated the trip to Ohio. It was here that God chose to "test" my willingness to trust Him! I noticed right away that in regards to Levi and Malachi I was able to trust that God had the best purposes and intentions in mind. I did not have a sense that I could control the outcome and so I readily gave up control to God where the boys were concerned. My "mama bear" instincts showed up in regards to Naomi. As we prepared to go to Ohio it was her welfare that I struggled to trust God with. My heart daily asked "Lord, what will be the impact on my little girl if we have to stay in Ohio for an extended period?" "Will our relationship suffer?" "Will she resent her brother?" "Do I really need to trust you with this?" "Isn't there another way?" To put it mildly I was scared! Part of my fear was due to the unnerving feeling that this journey had more to do with my transformation than it did with the well being of Levi. I admitted to several friends that I had complete peace that Levi would be OK but I feared how long we would be in Ohio because I knew that God was working on me! Would it take a premature delivery in Ohio to teach me that God is in control and not I?

As many of you have read, God took care of our family during our time in Ohio. Naomi did wonderfully and the procedure went beautifully. God gave me the opportunity to really trust him with the welfare of my children. I still wonder; however, how to do this each and everyday. Not too long ago I was reading the story of Abraham and Isaac in Genesis 22. When God asks Abraham to sacrifice Issac, Abraham doesn't hesitate but obeys God. As a parent this baffles my mind. Would I be able to obey God in that situation?

At this point in my reveling I need to state that I do not believe that the God I serve is vindictive or cruel. The passage in Matthew that I referenced at the beginning follows a section of the Bible which speaks of God's perfect provision for his children. The story of Isaac and Abraham ends with God faithfully providing a lamb to replace Isaac. I do not think that God routinely asks parents to "sacrifice" their children. I do believe; however, that God asks parents to trust him with the lives of our little ones. This is where I often fail. I somehow want to believe that I can protect and provide for my children better than God can!

Most recently this belief that I "know" how to provide for my children better than God has reared its ugly head again. While everything with Levi has been going smoothly and I have been released from bedrest, I keep ruminating on the fact that this type of pregnancy comes with a risk of premature delivery. In my human desire to control the situation I start to questions whether I should pick up Naomi so often or play outside with her or clean the house too frequently (I promise I am not just trying to get out of these things). All of the sudden I find myself trying to control an outcome again. Daily I have needed to remind myself that God is the creator of Levi. He knows how many days Levi will stay in the womb. Fretting about my activity level or worrying about a "weird" pain in my womb does me no good! I need to trust that God is in control.

While there have been moments when I wished I had never read the verse in Matthew that began this journey, I am so grateful that God does not allow us to ignore the places in our lives that need to be transformed. I am aware that I am just at the beginning of learning how to trust God with the care of my children. I have no doubt that I will fail to this many more times (like when they are ready to attend school; date; go to college). I do hope; however, that this experience marks a starting point in my journey of releasing control to God! He has chosen to give me two beautiful children and I need to trust that His hopes for them are even GREATER and more WONDERFUL than my own.

Ultrasound - 2/18

I had a regularly scheduled ultrasound today and the news continues to be positive. Levi continues to look healthy. By the measurements they took today he weighs about 2 pounds 1 ounce. His heartbeat was 150. Everything appears to be on target. The doctor did mention that at this point his legs are measuring "short"... in the 5th percentile. At this point she is not overly concerned, but she will be keeping her eye on how the growth of his legs continue.

The Acardiac twin continues to shrink. Today he was measuring only 11% of Levi's weight. There was no sign of any blood flow which was also wonderful.


If next week continues to look this good I may be allowed to go a whole 2 or 3 weeks in between appointments :)

Naomi

Naomi took all the blankets out of this basket and decided it was a FUN place to hang out.

Naomi Grace joined our family almost 2 years ago on April 17, 2009. In the past few weeks as we have been choosing Levi's name I have been reflecting on her name as well. Naomi means "pleasant," "delightful," or "beautiful". We chose her name because it was  the name my parents were going to give me and then at my birth decided I was a Sarah. We also liked the meaning "delightful" paired with her middle name Grace which means "gift from God".

Being fed blueberries by her friend Andrew.

 Naomi has truly been a representation of her name. In the past few weeks Drew and I have marveled at the delight she brings to our home. She typically wakes with a smile and wants to bring her stuffed animal jungle downstairs with her. She frequently exclaims "just try" when we state that something may not work (like putting a too big item into a little container). She loves to ask us and the kitties "what are you doin?'" (this even delightful one night at 3 a.m. when she was wide awake for reasons we did not know). Our house is full of joy due to the presence of this little girl. Grammy Norton was impressed with the ab workout that Naomi provided through laughter.

 

Naomi learning about how much fun bubbles can be in the bathtub!

Drew and I hope that the names we choose for our children represent a small picture of who they are. For Naomi we pray nightly that she will be a delightful gift from God to all those she comes into contact with. We pray that she will come to know God young and that we will demonstrate God's mercy, compassion, justice, righteousness and love as we raise her. We are so blessed to have been given this little girl and cannot wait to see how she impacts her brother Levi.

God continues to Work

Today has been full of good news! This morning I received an unexpected phone call from my doctor. She had received preliminary results from the Amniocentesis we received in Ohio. Apparently the Ohio doctors had run a FISH on our results which means that they run a quick results test on the chromosomes that most frequently show an abnormality in Acardiac pregnancies (for those interested they are Trisomy 13, 18 and 21 and the gender chromosomes). The results all came back clean. We will get full results from the Amnio in several weeks but my doctor stated this morning she would be really surprised if there were any abnormalities since these came back fine. This afternoon I had an ECHO ultrasound. Levi's heart is looking great, so good that we were able to cancel our previously scheduled ECHO for March! The cardiologist was a little concerned he could have a small hole in the bottom left ventricle of his heart, but she did not have conclusive evidence. She assured me that our baby was healthy and then stated that she was simply going to order that Levi had and ECHO after birth to be safe. Both Drew and I do not feel overly alarmed by this news. We have this undeniable peace that God's hand is on Levi. God has certainly been doing more than we could imagine so far.

Tomorrow I will go in for a routine OB appointment... I get to drink the "yummy" orange drink to check for gestational diabetes. After this appointment I will be able to go a WHOLE week without seeing any doctors! Thank you for your continued prayers. I told a friend today that at times I feel guilty to ask God for more because he has done so much already; however, I know I serve a big God who invites me to come to Him. My current prayer is that Levi will defy the odds and will be full term (even over 40 weeks). God can do it, He can do anything :)

Ultrasound - 2/7

We had an ultrasound today with our Minnesota perinatalogist. Everything looks GREAT!!!! Levi looks healthy. His heart rate was at 150 today. There is NO evidence of residual blood flow going to the Acardiac twin (Malachi). In fact, he Acardiac twin has already shrunk. According to the doctor the Acardiac twin is now only measuring 20% of the Levi's weight. I will be on bed rest until Wednesday, February 16, but then as long as everything continues on this path, I can resume normal activity. Thank you for your continued prayers!

We Made It!

We are HOME! After a yummy breakfast at the Rockford Holiday Inn this morning, we were able to spend a couple hours with Martha, Grant and their kids (for those who don't know, this is Drew's sister and her family). Naomi was so EXCITED to see her cousins. On the drive over to their house she kept saying: "cousins, seek, please" - she wanted to play hide and seek with her cousins. Once at Martha and Grants she jumped right in playing with everyone. It was really sweet. It was also a great way for her to burn off some steam before getting into the car for our drive. Once again she was a trooper! We only stopped once on the ride home and that was more driven by my need to use the restroom (Levi was jumping on my bladder). Naomi enjoyed our stop; however, since we were able to find a McDonalds with a Play Place. We arrived in Minneapolis around 5:30 p.m. and my sweet sister had prepared a delicious meal of tortilla soup for us. Naomi happily greeted our kittys and then reacquainted herself with they toys that did not make it on the trip! Each of us is glad to be home and we are all excited to sleep in our beds tonight.

Thank you for your prayers. It has been a whirlwind week and I am still in shock that I have had surgery and are home. We are eager to get back to some normalcy this week. We will continue to update, though it may not be so frequently. Thank you again for all your support this week. Good night.

We are 1/2 way home!!!

We are 1/2 way home (well actually more than 1/2 way). Naomi did SPECTACULAR in the car today! We only had to stop once in Lebanon, IN. She is surviving the drive by watching "papa's" show - The Jungle Book. The rest of us may be singing Bare Necessities for weeks as this is her favorite song and she likes to play that part over and over.

Tonight we are staying in Loves Park, IL. We chose to stay at a hotel so I (Sarah) can get my rest. Tomorrow morning we are going to visit Grant, Martha and the kiddos and let Naomi run out some energy with her cousins. We will then jump back into the car around 11 a.m. and set out for home. We are all excited to get back to our house.

The next week will consist of rest and many doctor's appointments. I will be having an ultrasound on Monday. A possible Echo on Wednesday and will see my OB on Thursday. It is so nice to meet with my regular Doctors and to no longer feel anxious that Levi will be born 700 miles from home. If he comes early now he will be in the NICU at the hospital 5 miles from our house.

My prayer now is twofold. First, that I will remain dependent upon God and attentive to His will as I move through this pregnancy. It is often easy to become complacent when one is not faced in immediate danger. Secondly, I am praying that I will continue to trust God with Levi. It has been difficult to not be anxious that something else will happen. I found myself concerned about if he moved enough today and scared that we would not hear his heart until Monday. I need to continually place Levi in God's hands.

Thank you again for all the prayers and support. Drew and I looked at one another many times this week and just stared in awe at the love we felt. We appreciate each one of you.

WE ARE COMING HOME !!!!

Hi Everyone,

God is GOOD. I am sitting writing this post from my hotel room in Cincinnati. I was released from the hospital today around 3:30 p.m. Today was a long day of waiting, but in the waiting God is teaching me to sit with Him and appreciate the gift of stillness (those who know me well will know that stillness and rest is not a natural part of who I am).

 After a restful evening sleep, I woke up this morning praying that I would be able to go home and that we would receive a good report from the doctors. I was seen by a resident doctor around 6:30 a.m. and was told that the first step of my day would be an ultrasound to check and make sure all blood flow between the two babies was still stopped. The ultrasound took place around 10:30 a.m. and it was WONDERFUL news. There was no evidence that blood flow had returned. While we are not completely out of the woods yet (the surgeon explained that sometimes blood flow can return several days or weeks after the procedure) this ultrasound was a relief. The next step of the day was to put Levi on the heart monitor for 30-40 minutes. . He did great and his HEART rate looked good. Finally I waited for the official word that I could go back to the hotel and that came a little before 3 p.m.


My discharge includes bed rest for the next several weeks so my FABULOUS mom has agreed  to stay at our home for a little while longer to help with Naomi and I am trying my best to have a good attitude and to rest. I have contacted my MN doctors and will have an ultrasound on Monday and an Echo on our healthy baby either next week or the week after. Tomorrow I will be calling my OB since I had to cancel an appointment with her due to our trip. No one worry, I am still going to be seeing DR.'s plenty regularly. Drew and I have joked that by the end of this pregnancy I should be able to receive my ultrasound tech degree since I have begun to learn how to read them :)

 Tomorrow we hope to begin our journey home. We have to stop at the hospital in the a.m. and drop off a specimen sample that I needed to finish collecting (this was due to a high blood pressure reading last evening). Our idea is that we will stop at the hospital around 9 a.m.and then go to the zoo (as long as I can get a wheel chair) for a little while before starting out towards the Chicago area. We are hoping to stay somewhere near the north side of Chicago tomorrow night (hopefully drive about 6 hours so that we are 1/2 way home). Please pray for safe travels and good weather.

We appreciate so much your prayers and support. We have truly felt lifted up during this time and have seen God's hand numerous times along the way. We cannot wait (well we can wait until he is due) to have you meet Levi. We believe God has plans for this child!

Hello from Sarah

Hello Everyone. I just want to thank you all for your prayers today. While it has been a long day and I have been poked a TON, things are going well. The contractions stopped shortly after the surgery and we are told that contractions after surgery are very normal due to the stress put on the uterus. Levi has been doing GREAT! He enjoys giving the medical personnel a run for their money by moving continuously and making the ultrasound images and heartbeat difficult to get :) He should fit right in with his sister.

At this point I am hoping to be discharged tomorrow; however, due to a high blood pressure reading this evening I am having to supply a 24 hour urinalysis which could make for a late discharge. Please pray that we can leave the hospital tomorrow. I know that I will meet with the Dr. tomorrow and will receive an ultrasound to check that the blood flow has remained stopped. Pray that all is well on that tomorrow too.

 I am off to bed! I will try to provide an update tomorrow.

Success!

Sarah is out of surgery now! After over 3 hours of surgery, the doctors were able to say that they feel that everything has been done that needs to be done. Sarah and Levi are both stable and doing well. They will continue to be monitored for the next several hours and perhaps overnight.

There have been a few contractions - please pray that these will stop over the next few hours.

We continue to appreciate your prayers and support!

The Rest of the Day of Testing

Sarah gave a little update on the day of testing (2/1) yesterday on our lunch break, and I will try to flesh out the rest of that day a little more here.

After lunch, we had another ultrasound. If our little one is born with an aversion to cameras or having his picture taken, it may be a result of having be viewed and photographed (or ultrasounded?) - as well as being poked and prodded and cajoled - so many times in utero.There wasn't anything really new or different from this particular ultrasound (for either baby). We did get to see a couple huge yawns (he may have a future as a PacMan model) and he remained very active and healthy... and just a little stubborn! :)

From this appointment, we moved into the first of a series of meeting with people to debrief and discuss the findings and our options going forward. The first of these appointments was with a Genetics Counselor. I'm not sure if we have shared this here yet, but this type of pregnancy carries a significant increase in the odds of the living baby having some sort of chromosomal disorder. Some of these are severe enough that they might result in the baby being stillborn or only having weeks or months to live after being born. Other possibilities would be developmental delays or various other challenges for the baby to overcome. This was and is a difficult topic, and we have been challenged to face up to our fears and questions and to also stand firm for the things that we believe in. Since the time that we have learned about this possibility, Sarah and I have been firmly convinced that we want to honor the life that God has granted this child and to respect the image of God that this child bears - whatever that looks like. We have pushed back against suggestions that we do an amniocentesis  to date - particularly if we felt that we were being pushed in that direction to determine if there was any reason to do invasive or difficult procedures for a baby that might not have a high chance to survive and thrive. It felt yesterday like there was a general disapproval that we had not done this to date and, at one point yesterday afternoon, we were becoming concerned that one of the options that we would be presented with was the need to do this test and wait for the results (it takes 7-10 days to get the results back) before moving forward.

We had been told that there would be a team meeting (maternal fetal doctors, obstetrics doctor, nurse, midwife, genetics counselor, and any other random people that could squeeze into the room with us) at the end of the day yesterday at which point we would be presented with the findings of the day and work with the team to determine the best path forward. This was generally a positive meeting. All the findings continue to confirm that our living baby boy is healthy and growing well. There was some concern (the same as listed from the original fetal echo sonogram) that his heart is slightly enlarged and will continue to have to work harder and harder to support the enlarging of the acardiac twin. The concerns of our doctors in Minneapolis and the consultation that had brought us to Cincinnati were that this acardiac twin will continue to increase in size and thus increase the chances of heart failure in the living twin (called the pump twin - because his heart is pumping for both of them).

The consensus out of this meeting was that the best next step was to do the surgery/procedure called a radio-frequency ablation (RFA - there is a link that describes this procedure on the post from 1/28). Sarah and I agreed with the doctors that this was the best decision to make, even after listening to the laundry list of potential problems that the doctors are required to tell us about. There are relatively small amounts of risk for Sarah and the living twin (infection, ruptured membranes, pre-term labor, etc...), but the statistics and percentages that we were given seemed to significantly be in favor of doing the procedure, and beyond that we feel that God's hand has brought us to Cincinnati and that His peace is guarding our decisions. We are also going to have an amniocentesis done at the same time - there is not any real increased risk to do this with the other procedure and we are being strongly encouraged (not required, but strongly encouraged) to take this step to help us and others prepare for whatever will happen. We scheduled the surgery for the next day (Wednesday, 2/2/11) at 9am and we have been told that an average time for this surgery is 90 minutes and that the best case scenario is for Sarah to have several hours (at least 6) of recovery, but that she could be released after that if there were no other warning signs. We would then need to keep a follow-up appointment the next day (Thursday), but if everything still looked good there, we would then be able to travel home after that. This procedure involves cutting off the blood flow to the acardiac twin and is not 100% guaranteed - there have been cases where the blood flow would resume even after the procedure was done or that there were other ways for the blood flow to connect - but it seems to us that it is the right decision to make right now.

I commented above about our strong views about protecting and honoring the life of the living twin, no matter what challenges he and we may face. To be brutally honest, something that both Sarah and I have been wrestling with is that this procedure seems to cut off a source of life or growth for the acardiac twin (when I have asked what has been growing over the past several weeks - the answers that I have heard have been that the tissue and the sac are growing in the amount of fluid that they are holding and that there are potentially cysts and other things like that growing as well - the growth is not reflective of further development of organs or structure or a heart or anything like that). Some of this struggle stems from a general uncertainty of what is really happening and we will also acknowledge that some of it stems from the reports we have heard from a couple people who have said they are praying for a miraculous healing and development of both twins. We are grateful for everyone that is praying for us and amazed by the technology that allows us to know as much as we do right now. We are even grateful for the struggle that God is leading us through to understand His heart for these boys and to wrestle through these challenges with Him at our side. We have never heard or seen a heartbeat from the acardiac twin (as far as I am aware, he never developed a heart) and we feel a sense of peace (in the midst of this struggle and difficulty) that the decision to move forward with this procedure is the right one.

We have been praying for these boys and asking for God's presence to be upon all of us and for His purposes for these children of His to be revealed. We rejoice in the truth that God knows all things and loves all people and has a plan for every single one of His kids (no matter how old or young they are). We have a strong sense of peace that we will be joined together with our sons at the time that God intends - with one in this life and with the other when we meet before God's throne in heaven. We invite you to pray with us by name for these boys. We plan to name the pump twin Levi (means "combined" or "joined in harmony") and the acardiac twin Malachi (means "messenger of God" or "My messenger"). We are still negotiating on middle names, but we feel that these names give words to our strong sense that Levi will be joined to our family and that he will also always be joined to his brother. We also have a strong sense that Malachi is already welcome in God's presence and being celebrated in heaven and that his story will be a clear message from God for many, many people.

Thanks again for your prayers and support! It has been incredible to recognize that we are not on this journey alone and that so many people are praying and sacrificing for us and for the miracle babies that God is supporting and providing for even today.

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. " (Ephesians 3:20-21, NIV)

A Little Housekeeping - 2/2/11

If you are reading this blog right now please pray. Sarah went into surgery several minutes after 9am EST. I just got the first update and everything seems to be going well.

We apologize for not getting more news up last night, but our priority on returning to the hotel last night was to spend a little quality time with Naomi. She and Grammy Norton had a great day yesterday playing with books and toys and watching videos (mainly the Lion King right now) and wandering the halls of our hotel. I think Naomi has said "hi" to and perhaps tried to help all of the housekeeping/maintenance/management staff and seems to have quite a future in the hotel business! :)

Our power did go out last night for several hours and we needed to try to get some sleep for an early morning today. Sarah and I returned to the hospital a little before 7am for pre-surgery prep (blood drawn, EKG, another ultrasound, etc...). Sarah is handling this incredibly well - she is smiling and putting people at ease and is incredibly brave about the surgery she is going into (more about that in the next post).

I will be posting later this morning about the rest of yesterday's appointments and throughout the day as we have updates and more news to share.

Thanks for being part of this journey with us!

Days End 2/1/11

The hotel that Sarah and Drew are staying in had a power outage so after a brief phone call I (Dad-Kevin Norton) am reporting on their blog tonight.

Sarah will be going in for surgery tomorrow morning 2/2/11 at 9:00am.  If all goes according to Dr. plans Sarah will be back to hotel by that evening and return home on the weekend.

Sarah and baby are listed as low risk during this procedure with a high % of success in Sarah's favor.

Prayer request is that Naomi continue to do well and sleep well in a unfamiliar environment and of course the surgery goes well like the Dr's anticipate.

And I might add pray for Grammy Norton that her energy level remains high and her worry level stays low.

Partial Update

Hey Everyone we have a few moments and thought we would let you know how the morning in Ohio has gone.

First, THANK YOU for prayers of rest. Naomi took awhile to get down last night but once she fell asleep at 9 p.m. she slept (in HER bed) until almost 9 a.m. This was WONDERFUL. God also allowed each of the adults to have a restful night without worry.

Second, THANK YOU for your prayers throughout the morning. I (Sarah) have undergone the ECHO and the MRI. We were able to meet with the cardiologist after the ECHO and the results were the same as when we had an ECHO two weeks ago in MN. There is a little enlargement of the heart, but overall it is functioning healthy. We will not have the results of the MRI until our team meeting this afternoon but I made it through and did not panic :) Actually it was fairly relaxing. I only tensed up when they wanted me to hold my breath for 30 seconds ;).

Finally, THANK YOU for your prayers for Naomi. She and Grammy are having fun at the hotel today. We are sad that they cannot get out, but it sounds as if all is going well. We are hoping to take Naomi out to her first Chuckee Cheese outing tonight after we are done at the hospital.

We will update again this evening... though I will warn you we will be hanging with Naomi first so it may be later when we have a chance to catch everyone up. We are in GREAT hands here and for that we are grateful.