October 26, 2007
Spontanious Gift
Matt came home the other day with an opportunity to go to the Florida Keys for a week. Someone else from Matt's work was supposed to go and last minute was not able to. Fortunately, Matt's schedule is not packed since he cleared it for the possibility of being in PA for awhile. Matt asked if I could come and so Fiona and I are going along for the ride. I am still shocked over this opportunity because it is nothing we sought out. It just fell into our laps and here we go. This is a blessing and perfect timing before the holidays and Whitney's arrival. It is amazing to me all that God has and is providing for us. I am overwhelmed with the knowledge that He knows my every need.
October 19, 2007
In Retrospect
First, we apologize for not posting in the last week. Actually, I apologize, Susan has been encouraging me to post since we got back from Philadelphia.
In the past week and a half, I've been asked quite frequently how we're doing, and then specifically how Susan is doing. No one seems to believe me when I say that we're doing fine. It was disappointing not to be able to participate in the MOMS trial, but it does no good for us to dwell on that.
I never did explain what happened and how we reached the decision to enroll in the trial before we found out that we were not eligible. On Friday, we left CHOP impressed with the doctors and hopeful for the benefits that might accompany the surgery. The obstetrician we met with suggested that there was a possibility, based on CHOP's experience with the prenatal surgeries at CHOP before the study that Whitney could show a two level improvement. In other words, the effects of her spina bifida on her lower limbs would be like someone with a spinal lesion at the fifth lumbar vertebrae instead of the third (which is where Whitney's lesion is). Practically speaking that's the difference between walking until puberty with full leg braces and in a wheelchair thereafter to walking for her entire life with ankle braces. That said, we were very concerned about the possibility that if we had the surgery, Whitney could be born extremely premature. CHOP had carefully explained all the risks associated with prematurity, and they are exceedingly frightening. As an aside, I now have an immense sympathy for parents whose babies are born before the 30th week.
We spent much of the day Saturday intentionally not talking about the surgery because we both needed time to process the information we received. For those of you who don't know us well, Susan and I process information differently. I tend to be more logical and reach a decision faster (although I am more prone to change my mind) while Susan tends to ponder things over a longer peroid and then reach a firm decision. Susan and I agonized over whether we could handle opting into the study and then losing Whitney or causing her even more severe problems. More generally, we wrestled with whether it was God's will for us and Whitney to participate in the study.
To fathom God's will in a situation like this was not easy--we were considering an elective surgical procedure that could kill Whitney to improve her life. It's a little easier to accept the risk of a fatal surgical outcome, I think, when the surgery is life-saving or life-lenthening and the alternative is death. Susan and I prayed and sought the advice from friends who are ministers and doctors. They told us that ultimately, we were doing what the Lord requires of us, that we seek His guidance in prayer, search the Scriptures for normative principles, and use the intellect He has given us to gather all the possible relevant information. We concluded that we were considering the surgery for the right reason, improving Whitney's quality of life; that we were not taking unnecessary or unconsidered risks; and that we were not acting contrary to God's Word or our own consciences. Ultimately, there was no "right" answer--we could have the surgery or not have the surgery without our consciences condemning us.
The hardest issue to consider was "what if Whitney dies?" Spina bifida is not typically lethal during infancy (or childhood for that matter). Would Whitney's death be a sign of God's punishment on us for making the wrong decision? How could we live with ourselves/maintain a belief in a just God if Whitney died? We reasoned that God is a just God--He does not punish us for doing things that He has not warned us are wrong. Nothing in Scripture or our consciences suggested that the surgery was morally wrong. If Whitney died as a result of the surgery, it would not be God's punishment. God also promises us that He will not give us more than we can bear, a blessing we had been experiencing ever since learning of Whitney's diagnosis and earlier when Susan's mom passed away. We decided that we could be confident that no matter what happened, God would provide for us and use whatever happened for the good of our salvation.
So then, we were left with making a decision. Susan and I concluded that we were inclined to opt into the MOMS trial. We decided to sleep on the decision and if we still felt comfortable with it in the morning, we would opt in. We prayed on Sunday night that if the Lord did not want us to proceed with MOMS, that he would not give us peace with the decision. We woke up on Monday with continued concerns but without any uneasiness about the surgery.
Of course, little did we know that 12 hours later, we would find out that the Lord had already determined at least as of Thursday that we would not participate in the trial. We were admittedly a little upset that the Lord had allowed us to go through the angst of reaching a decision about the study. But looking back, Susan and I are still thankful that God clearly revealed His will for us. We don't understand why He allowed us to go to Philadephia and agonize over whether to participate in MOMS, but we are content that He is the sovereign God, we're not.
In the end, going to Philadelphia has been a blessing. The doctors at CHOP explained Whitney's condition in far more specific and helpful ways than anyone else we have met with. They were willing to give prognoses and make predictions that allow us to appropriately set our expectations. For example, the pediatric neurosurgeon at CHOP told us that it is virtually certain that Whitney will need a shunt shortly after birth because her ventricles are already significantly enlarged. We got to experience the hospitality of the Ronald McDonald House. And we got to wrestle with a very difficult decision and learned how to apply a biblical decision-making process.
I could go on, but suffice it to say that Susan and I are happy to be home, and we're at peace with the result of our trip to Philadelphia and with Whitney's spina bifida. Sorry for the stream-of-consciousness post. I'll try to be more succinct next time.
In the past week and a half, I've been asked quite frequently how we're doing, and then specifically how Susan is doing. No one seems to believe me when I say that we're doing fine. It was disappointing not to be able to participate in the MOMS trial, but it does no good for us to dwell on that.
I never did explain what happened and how we reached the decision to enroll in the trial before we found out that we were not eligible. On Friday, we left CHOP impressed with the doctors and hopeful for the benefits that might accompany the surgery. The obstetrician we met with suggested that there was a possibility, based on CHOP's experience with the prenatal surgeries at CHOP before the study that Whitney could show a two level improvement. In other words, the effects of her spina bifida on her lower limbs would be like someone with a spinal lesion at the fifth lumbar vertebrae instead of the third (which is where Whitney's lesion is). Practically speaking that's the difference between walking until puberty with full leg braces and in a wheelchair thereafter to walking for her entire life with ankle braces. That said, we were very concerned about the possibility that if we had the surgery, Whitney could be born extremely premature. CHOP had carefully explained all the risks associated with prematurity, and they are exceedingly frightening. As an aside, I now have an immense sympathy for parents whose babies are born before the 30th week.
We spent much of the day Saturday intentionally not talking about the surgery because we both needed time to process the information we received. For those of you who don't know us well, Susan and I process information differently. I tend to be more logical and reach a decision faster (although I am more prone to change my mind) while Susan tends to ponder things over a longer peroid and then reach a firm decision. Susan and I agonized over whether we could handle opting into the study and then losing Whitney or causing her even more severe problems. More generally, we wrestled with whether it was God's will for us and Whitney to participate in the study.
To fathom God's will in a situation like this was not easy--we were considering an elective surgical procedure that could kill Whitney to improve her life. It's a little easier to accept the risk of a fatal surgical outcome, I think, when the surgery is life-saving or life-lenthening and the alternative is death. Susan and I prayed and sought the advice from friends who are ministers and doctors. They told us that ultimately, we were doing what the Lord requires of us, that we seek His guidance in prayer, search the Scriptures for normative principles, and use the intellect He has given us to gather all the possible relevant information. We concluded that we were considering the surgery for the right reason, improving Whitney's quality of life; that we were not taking unnecessary or unconsidered risks; and that we were not acting contrary to God's Word or our own consciences. Ultimately, there was no "right" answer--we could have the surgery or not have the surgery without our consciences condemning us.
The hardest issue to consider was "what if Whitney dies?" Spina bifida is not typically lethal during infancy (or childhood for that matter). Would Whitney's death be a sign of God's punishment on us for making the wrong decision? How could we live with ourselves/maintain a belief in a just God if Whitney died? We reasoned that God is a just God--He does not punish us for doing things that He has not warned us are wrong. Nothing in Scripture or our consciences suggested that the surgery was morally wrong. If Whitney died as a result of the surgery, it would not be God's punishment. God also promises us that He will not give us more than we can bear, a blessing we had been experiencing ever since learning of Whitney's diagnosis and earlier when Susan's mom passed away. We decided that we could be confident that no matter what happened, God would provide for us and use whatever happened for the good of our salvation.
So then, we were left with making a decision. Susan and I concluded that we were inclined to opt into the MOMS trial. We decided to sleep on the decision and if we still felt comfortable with it in the morning, we would opt in. We prayed on Sunday night that if the Lord did not want us to proceed with MOMS, that he would not give us peace with the decision. We woke up on Monday with continued concerns but without any uneasiness about the surgery.
Of course, little did we know that 12 hours later, we would find out that the Lord had already determined at least as of Thursday that we would not participate in the trial. We were admittedly a little upset that the Lord had allowed us to go through the angst of reaching a decision about the study. But looking back, Susan and I are still thankful that God clearly revealed His will for us. We don't understand why He allowed us to go to Philadephia and agonize over whether to participate in MOMS, but we are content that He is the sovereign God, we're not.
In the end, going to Philadelphia has been a blessing. The doctors at CHOP explained Whitney's condition in far more specific and helpful ways than anyone else we have met with. They were willing to give prognoses and make predictions that allow us to appropriately set our expectations. For example, the pediatric neurosurgeon at CHOP told us that it is virtually certain that Whitney will need a shunt shortly after birth because her ventricles are already significantly enlarged. We got to experience the hospitality of the Ronald McDonald House. And we got to wrestle with a very difficult decision and learned how to apply a biblical decision-making process.
I could go on, but suffice it to say that Susan and I are happy to be home, and we're at peace with the result of our trip to Philadelphia and with Whitney's spina bifida. Sorry for the stream-of-consciousness post. I'll try to be more succinct next time.
October 11, 2007
Home Sweet Home
We arrived home on Tuesday night. Our flights went well and our seats were upgraded on each one. The more leg room the better. Fiona (and Maria) picked us up from the airport and we were very excited to see her. Once we gave her a chance to be put down she took a few steps for us! What wonderful timing. We are so glad that we did not miss out on that moment. The unpacking is still in progress. Thankfully we were able to do our laundry before we left. It takes awhile to unpack 3 months worth of stuff, hopefully today is the last day.
Amazingly Matt and I feel peaceful about were we are. God has already provided so much for us and we have no doubt that He will continue to provide. Thankfully we have 3 months to prepare for Whitney's arrival. Her due date is January 21, however we will need to have a c section two weeks before that. Our next doctor's appointment is at the end of this month and by that time they should receive all of the results from the testing we had done in PA. CHOP is gracious enough to share my file with our doctors here in town. This should allow them to keep track of Whitney's bleed as well.
Amazingly Matt and I feel peaceful about were we are. God has already provided so much for us and we have no doubt that He will continue to provide. Thankfully we have 3 months to prepare for Whitney's arrival. Her due date is January 21, however we will need to have a c section two weeks before that. Our next doctor's appointment is at the end of this month and by that time they should receive all of the results from the testing we had done in PA. CHOP is gracious enough to share my file with our doctors here in town. This should allow them to keep track of Whitney's bleed as well.
October 8, 2007
Prayer Answered
What was the prayer? We have been praying that God would make this decision unmistakably clear to us both as to what we are to do. He has answered us without question. Although we thought we had a decision to make and have been deliberating and stressing over this whole process in the end, there was no decision to be made. We came to a conclusion over the weekend to enter the study after many conversations, tears, and prayer. God brought us through this decision-making process bringing us closer to Him and to each other and we praise Him for that. Looking back on the day we have mixed emotions.
We are thankful that God took us on this journey to meet with these wonderful doctors and that they discovered this bleed through the use of the MRI, which we would not have had otherwise. We are also thankful that he has used this process to deepen our faith and has given us many opportunities to share with others. We are disappointed in the result because we have poured so much time and effort into the details of this trip. We have also put so much of our energy into this decision and then to have it disappear is actually hard to put into words... but how can we argue when God has answered our prayer so clearly?
I know that God is the healer not the Doctors here. When Whitney goes beyond what they have predicted her to do, there is only one explaination--God's healing hand not the in utero proceedure. Thank you for praying us through this difficult week. We continue to eargerly anticipate what God has in store for our dear daughter.
Going Home
A quick note:
CHOP told us today that we are disqualified from the study because of the small choriod plexus bleed in Whitney's brain. Praise God for a clear answer to our prayers. More to follow . . .
CHOP told us today that we are disqualified from the study because of the small choriod plexus bleed in Whitney's brain. Praise God for a clear answer to our prayers. More to follow . . .
On hold, again
We had to get up at oh-dark-thirty this morning, as my brother-in-law would say, to get to CHOP to meet with the pediatric neurosurgeon this morning. We did not receive a lot of new information, except that it is a near certainty that Whitney will need a shunt if her lesion is repaired after birth.
On Friday, we learned that Whitney suffered a small amount of bleeding in her choriod plexis at some point earlier in the pregnancy. The choriod plexis is a gland present on both sides of the brain in the ventricles that produces cerebrospinal fluid. The bleeding does not extend into the brain itself nor did the blood spread into the ventricles (where the cerebrospinal fluid circulates to bathe the brain). On Friday, the obstetrician told us that he did not believe that this choriod plexis hemorrhage would exclude us from the study, but that the pediatric neurosurgeon (who was out) would need to make the call.
Turns out, the pediatric neurosurgeon cannot make the call after all. The National Institutes of Health (NIH) does. NIH funds and oversees MOMS. CHOP is concerned that the bleeding may exclude us from the study. The doctors are all of the opinion that the choriod plexis hemorrhage is not significant. But the protocols for MOMS exclude babies with any bleeding in the brain. The doctors rationalize that this was intended to exclude hemorrhages that occur in the brain itself and the ventricles, not the choriod plexis. The doctors have contacted the National Institutes of Health to recommend that we be permitted to participate in the study if we choose. Now we have to wait for them to respond.
Apparently, NIH has received the data and CHOP hopes to have an answer by the end of the day. Cynically, I'm well aware that this is Columbus Day, one of the umpteen holidays given to federal employees in lieu of decent pay. Hopefully, the right people are not taking the day off so that we'll really get an answer today. In any event, I highly doubt that we would have surgery tomorrow if we opt in. Another day without Fiona . . .
On Friday, we learned that Whitney suffered a small amount of bleeding in her choriod plexis at some point earlier in the pregnancy. The choriod plexis is a gland present on both sides of the brain in the ventricles that produces cerebrospinal fluid. The bleeding does not extend into the brain itself nor did the blood spread into the ventricles (where the cerebrospinal fluid circulates to bathe the brain). On Friday, the obstetrician told us that he did not believe that this choriod plexis hemorrhage would exclude us from the study, but that the pediatric neurosurgeon (who was out) would need to make the call.
Turns out, the pediatric neurosurgeon cannot make the call after all. The National Institutes of Health (NIH) does. NIH funds and oversees MOMS. CHOP is concerned that the bleeding may exclude us from the study. The doctors are all of the opinion that the choriod plexis hemorrhage is not significant. But the protocols for MOMS exclude babies with any bleeding in the brain. The doctors rationalize that this was intended to exclude hemorrhages that occur in the brain itself and the ventricles, not the choriod plexis. The doctors have contacted the National Institutes of Health to recommend that we be permitted to participate in the study if we choose. Now we have to wait for them to respond.
Apparently, NIH has received the data and CHOP hopes to have an answer by the end of the day. Cynically, I'm well aware that this is Columbus Day, one of the umpteen holidays given to federal employees in lieu of decent pay. Hopefully, the right people are not taking the day off so that we'll really get an answer today. In any event, I highly doubt that we would have surgery tomorrow if we opt in. Another day without Fiona . . .
Friendly Presbyterians
We had a great Sunday worshipping with Immanuel OPC in Bellmawr, New Jersey. Strong, straightforward preaching at two services with communion (celebrated once a month--wish we did that at home) to boot.
After the morning service, we were invited to the church's potluck after the morning service. We even had to decline an invitation to join a family for dinner after the morning service because of the potluck. While we were getting ready to go to the evening service, a different family from the church called us to invite us to a bonfire after evening worship. After discussing our situation, the other families encouraged and prayed for us, then offered to help in any way that they can. It is an awesome experience to find brothers and sisters in Christ who immediately treated us as brothers and sisters even though they had never met us before. We look forward to worshipping with Immanuel in the future.
After the morning service, we were invited to the church's potluck after the morning service. We even had to decline an invitation to join a family for dinner after the morning service because of the potluck. While we were getting ready to go to the evening service, a different family from the church called us to invite us to a bonfire after evening worship. After discussing our situation, the other families encouraged and prayed for us, then offered to help in any way that they can. It is an awesome experience to find brothers and sisters in Christ who immediately treated us as brothers and sisters even though they had never met us before. We look forward to worshipping with Immanuel in the future.
October 6, 2007
Fiona
We have been blessed throughout our marriage to know a wonderful photographer. When she found out that we were leaving last week for Philly, she squeezed us into her schedule for pictures of Fiona. She shared a few of them with us today, and they brightened our spirits tonight as we deliberate what to do. We share a few of them with you here, with her permission.
October 5, 2007
La Famiglia
Today is Susan's birthday--she finally matured to join me in the post-twenties. After getting more difficult information about Whitney than I care to recount, I took Susan to a nice Italian restaurant. The food was excellent, and plentiful. But better than that, the atmosphere was sufficiently private to allow Susan and I our first opportunity to begin discussing where we going--at this point, our conclusion is "we're not sure."
We would ask you, our friends and relatives, "the family" to continue to pray that Susan and I will be able to readily discern the Lord's will for us by Monday so that we can return to CHOP with confidence.
In other news, our warmest thanks to Melody for sending a care package complete with a birthday banner, candles, and matches. It brightened our day after our last consultation.
By the way, we highly recommend the restaurant if you're ever in Philadelphia.
Day 2
What a day. It was filled with information, meetings, and emotions. I feel like I am still pulling myself together and it is 10:30 PM. Yesterday we had all of our tests and today we spoke with all of the surgeons about the results of those tests. We were able to meet with them one on one and pepper them with questions for hours. What a blessing it is to be able to meet with the most knowledgeable doctors for spina bifida in the nation. There was a lot of information that was confirmed for us and more details and specifics were given. This is such a difficult decision and I wish there was a 'fix' for everything but realistically there is not. The battle is long and up hill no matter which avenue we go down. It is comforting to know that God already knows where we are going today and in 5 years. Please continue to pray for us this weekend as we sit down together and weigh out all the information before us.
Tonight we were thankfully able to end the day on a good note. We went out to a restaurant and spoiled ourselves with the most delightful food. It was a wonderful dinner with great company. ;)
Tonight we were thankfully able to end the day on a good note. We went out to a restaurant and spoiled ourselves with the most delightful food. It was a wonderful dinner with great company. ;)
October 4, 2007
CHOP--Day 1
We're at CHOP now. Susan's talking to a genetic counselor. Our first stop of the day went long--Whitney started dancing when they put Susan in the MRI machine. I think she's got her mom's spirit. As soon as we are done with the social worker, we'll go on for an echocardiogram.
Our friends Steve and Carrie Wolters are coming to Philly to go to dinner with us tonight. We just saw them in August--check out the cute picture of Fiona from their blog.
October 3, 2007
Ronald McDonald House
We made it! We started the day in a rush to get Fiona to our Pastor's home and then headed to the airport. Our flights were uneventful and we arrived here on time. We decided to rent a car and after only 1 wrong turn we found the Ronald House. Thankfully it is right next door to the Police Department and it is also just a few miles from Rutgers University. Matt and I are still recovering from our shock after the tour of this house. You walk in and there is this huge community kitchen with probably 6 refrigerators lined up. 2 are for everyone and then there are the ones labeled by room that you can put your own food in. There are also 4 cupboards filled with food including Pop Tarts that I have been craving. (: There is a play room, living room and dining room on the main floor. Then we went up to our room that has 3 twin beds and 1 double. It is a very large room with a separate bathroom. We also have a lounge and laundry room on our floor with detergent provided! Everything is very clean and amazingly well kept as they are celebrating 24 years tomorrow. We are very blessed to be able to be here in such a wonderful and friendly home.
Our first appointment at CHOP tomorrow is at 8 AM. We will keep you all posted. Thank you for praying us through our travel today. Oh, and Fiona is doing great. (: She is settling right on in and to my understanding is quite entertained by the 2 Miller children. I am so thankful that she is being well taken care of and adjusting well.
Our first appointment at CHOP tomorrow is at 8 AM. We will keep you all posted. Thank you for praying us through our travel today. Oh, and Fiona is doing great. (: She is settling right on in and to my understanding is quite entertained by the 2 Miller children. I am so thankful that she is being well taken care of and adjusting well.
October 2, 2007
Whitney's Stats
Whitney had another ultrasound yesterday. She is now 1 lbs and 9 oz which puts her at 55% for being 24 weeks old. In other words her growth is very normal! We found out it is very common for Spina bifida babies to have club feet but her feet are looking straight so far. We also know that she has no additional chromosomal issues so we are thankful for this overall good report. On the other hand her hydrocephalus is increasing. They first measured the fluid in her brain at 14 and now at 17. This was alarming to me but my Doctor was not surprised and said that an increase is exspected. (I am still concerned.)
I should get back to the packing... I love to pack.
I should get back to the packing... I love to pack.
Our new (temporary) address
Our liason at CHOP has been gracious enough to accept our mail for us until we return home or we move into a more permanant place after surgery:
Matt & Susan Nelson
c/o Jamie Koh
The Children's Hospital of Philadelphia
34th & Civic Center Blvd.
Philadelphia, PA 19104
Matt & Susan Nelson
c/o Jamie Koh
The Children's Hospital of Philadelphia
34th & Civic Center Blvd.
Philadelphia, PA 19104
October 1, 2007
Do we rent a car?
Now we get to sweat the important stuff like, should we dispense with the cabs and rent a car? They haven't figured out if we are going to stay at the Ronald McDonald's house in Camden or in the Sheraton Inn a few blocks from CHOP. Obviously, we won't need to drive to CHOP if we're at the Sheraton, and it will be easier to go site-seeing on Saturday. On the other hand, we will be more than 10 miles from the church we hope to worship with on Sunday.
With a little help from my uncle and his minister, we've found a church to worship with on Sunday. Immanuel Orthodox Presbyterian in Bellmawr, New Jersey. It looks like it's a little southeast of Philly on the better side of the Delaware River. I'm trying to find out if there is bus service from Camden and/or the University of Pennsylvannia to Bellmawr. If not, we either have to hail a cab or rent a car.
Anyone know how good/safe public transportation is in Philly? Is it safe to take public transportation from Camden? Is it safe to park in Camden?
With a little help from my uncle and his minister, we've found a church to worship with on Sunday. Immanuel Orthodox Presbyterian in Bellmawr, New Jersey. It looks like it's a little southeast of Philly on the better side of the Delaware River. I'm trying to find out if there is bus service from Camden and/or the University of Pennsylvannia to Bellmawr. If not, we either have to hail a cab or rent a car.
Anyone know how good/safe public transportation is in Philly? Is it safe to take public transportation from Camden? Is it safe to park in Camden?
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