The funeral for our baby girl will be held on Tuesday, October 8th. There will be a viewing for friends and family from 9:30-10:30 am with the service beginning at 11:00 am. Services will be held at the Olympic Park Building of The Church of Jesus Christ of Latter-Day Saints located at 5823 South 4800 West Kearns, UT 84118. Interment will follow immediately after the service at Valley View Cemetery located at 4335 West 4100 South West Valley City, UT 84120
We invite all friends and family who are able to attend to join us.
Friday, October 4, 2013
Thursday, October 3, 2013
Lucy's arrival
Unexpected Plans
Jessica and I went in for her scheduled amniotic reduction on Tuesday, October 1st. They always begin with an ultrasound, this time measuring only for the severity of the polyhydramnios. The previous week, the measurements were 32cm, where 20 is normal, and anything above 25 is considered high. On this day, she measured 45cm. Dr. Rose came in to discuss the results of the ultrasound and the planned amniotic reduction. She was extremely concerned about the severity of the condition and the effects of this condition on Jessica's health. Her fear was that Jessica would go into labor and instead of having a birth where everything was scheduled and planned, it would be an emergency and none of our goals would be able to be accommodated. I wouldn't be allowed in the OR, the risk to Lucy would be much higher, and worst of all, they could be fighting to save Jessica's life.
After much discussion, we agreed with her assessment that Lucy would need to be delivered that day or the following day. We also discussed our delivery plan, which she was aware of. She knew the NICU had a copy of it, but would follow up with the doctors that would be there to make sure they understood our desires for how any difficulties would be handled. We wanted to be able to spend a day or two with Lucy if possible, however we had been told that even with intubation, there was a good likelihood that Lucy's lungs wouldn't be developed enough to allow her to receive the oxygen she needed. Our desire was that she be intubated, but if that didn't work that no other heroic efforts would be made. No chest compressions, chest tubes or other lifesaving measures. If they couldn't stabilize her, they were to bring her back to the operating room so we could spend whatever short time we could have with her.
We went upstairs and visited with Dr. Kaelberer who agreed with her assessment and told us our options were for her to be born that day at 4:30 pm, or we could come in the next day at 5:00 am for delivery at 6:30 am. We asked him to see if there was any other option for Wednesday. Thursday was too late, but we wanted a little more time to prepare. He sent us home and told us we would receive a call letting us know what was available. We went home, I did some final packing while Jessica tried to spend time with the kids. When they called, we were told Wednesday was fully scheduled and while we did have the early morning option, if there were any emergencies, we would be bumped, so we decided to go ahead and have her delivered that day.
I called my parents and asked them to be there, and we asked Jessica's mother and sister to bring Joseph and Rachel to the hospital after Joey woke from his nap. We arrived at the hospital at 3:00, got admitted, and settled into a room. The nurse came in and as usual, asked many, many questions as they were preparing for Lucy's arrival. I inquired if it would be possible for my dad to be admitted to the operating room to be on standby in case they were unable to do anything for Lucy, to assist in giving Lucy her a blessing. I was told that he wouldn't be able to be there for the whole procedure, but may be able to be on standby to be admitted if needed, but it would be up to the doctor as normally the only non-medical personnel admitted is the father. Fortunately, they were very understanding and permission was granted. Before I knew it, we I was suiting up and helping my dad do the same and then Jessica and I were headed to the OR.
One of Jessica's least favorite parts of the whole procedure is having the spinal block inserted. When Elizabeth was born, the anesthesiologist had to try inserting the block 8 different times over 30 minutes before he was successful. It was a truly traumatizing event and causes great fear each time it needs to happen. We were relieved to learn that Dr. Rigby was the anesthesiologist on duty. He was the anesthesiologist who did the block when Joseph was born. He did it in one attempt, so we were hoping for the best. He did only have to insert the needle one time, but it took a long time, and a lot of manipulation to get it in the right spot. For several minutes, it was very painful for Jessica, but soon enough it was complete and they began the rest of the preparations for the c-section.
I've been in the OR for our previous 3 children's birth's, and was quite familiar with the procedures, and how long it takes before they are able to get to the baby. However, this time was very quick. Before I knew it, the membrane's had been cut and all the amniotic fluid was being suctioned out. I was told I could look and being slightly unprepared, they already had Lucy out and ready to be handed through the window to the NICU. They gave me a moment to take a few pictures and then she was off. I remained with Jessica, hoping and praying that Lucy was doing okay. After about 10 minutes or so, I asked if there was a way they could check with the NICU to see how Lucy was doing. Someone in the room indicated that it was likely a good sign that we hadn't heard from them. I had about 5 seconds of relief before the nurse poked her head back and said they were returning her. Of course that meant that they were either unable to get the breathing tube in, or that her lungs were not mature enough to provide enough oxygen to sustain her life. I hadn't really cried since the day it was confirmed she had this condition. All the emotion I had been retaining came out as quickly as it could. I couldn't breathe. I couldn't speak. My eyes burned as tears rolled down my face. They brought Lucy in and handed her to me (Jessica's arms were strapped to the table). Her eyes were closed and she looked so peaceful. My dad was admitted to the OR and gave her a wonderful blessing as I was unable to do so. I did my best to hold Lucy in a way that Jessica would be able to see her. It was heartbreaking to know that she would be fading quickly and her heart would stop. The head NICU doctor came in behind me and indicated that they were able to get the tube in, but that even at high pressure she was not absorbing oxygen and she was sorry they couldn't do more for her.
Dr. Kaelberer completed Jessica's surgery and they prepared to be able to move her into recovery. The nurse came over to check Lucy and indicated that while faint and slow, she did have a heartbeat. Lucy was handed to Jessica as they wheeled her into the room. We were met by many family members, but were especially excited to see Rachel and Joseph. We also had on hand a wonderful neighbor who is a photographer ready to take pictures in the precious little time we had. We quickly gathered Joey and Rachel and had them spend as much time beside mom and Lucy as possible. They were both so excited to see their baby sister. Rachel had a smile like I've never seen, and Joey was absolutely fascinated with her. He kept calling her "my baby" and would rub her head and put his finger on various parts of her face naming each part. She was never able to open her eyes, nor respond, yet it was so wonderful that they were able to spend time with her. We have some wonderful family pictures with 3 of our living children.
At 6:50, a short 48 minutes after she was born, the nurse checked Lucy after we excused our children from our room and found that her heart had stopped. We had a wonderful opportunity to visit and hold Lucy without any tubes or other scary things attached to her.
Another small blessing we received is that while the anesthesia is wearing off from the spinal block, most women shake pretty hard. Jessica has done this with every previous delivery. However, this time, she didn't move at all. We were concerned about having the kids in during recovery that seeing that might frighten them. After all, it had frightened me when I saw it the first time, so it was truly a blessing that Joey and Rachel could visit with Jessica in such a peaceful manner.
All in all, while we don't understand all the reasons we have been asked to bring two children into this world only to give them back quickly, we have been very blessed. We have two amazing, beautiful, intelligent children here on earth, and two equally amazing celestial spirits looking out for us. We have been shown so much love by countless family, friends, and even those we don't know. We are so very grateful for the support we have received. There will be many hard days ahead for sure, but our faith in our Heavenly Father and His love, and the love from our family and friends will certainly see us through.
Lucy Danielle Goodwin
Born October 1, 2013 at 6:02 PM
3 pounds 12 ounces
14 inches long
Passed away October 1, 2013 at 6:50 PM
Jessica and I went in for her scheduled amniotic reduction on Tuesday, October 1st. They always begin with an ultrasound, this time measuring only for the severity of the polyhydramnios. The previous week, the measurements were 32cm, where 20 is normal, and anything above 25 is considered high. On this day, she measured 45cm. Dr. Rose came in to discuss the results of the ultrasound and the planned amniotic reduction. She was extremely concerned about the severity of the condition and the effects of this condition on Jessica's health. Her fear was that Jessica would go into labor and instead of having a birth where everything was scheduled and planned, it would be an emergency and none of our goals would be able to be accommodated. I wouldn't be allowed in the OR, the risk to Lucy would be much higher, and worst of all, they could be fighting to save Jessica's life.
After much discussion, we agreed with her assessment that Lucy would need to be delivered that day or the following day. We also discussed our delivery plan, which she was aware of. She knew the NICU had a copy of it, but would follow up with the doctors that would be there to make sure they understood our desires for how any difficulties would be handled. We wanted to be able to spend a day or two with Lucy if possible, however we had been told that even with intubation, there was a good likelihood that Lucy's lungs wouldn't be developed enough to allow her to receive the oxygen she needed. Our desire was that she be intubated, but if that didn't work that no other heroic efforts would be made. No chest compressions, chest tubes or other lifesaving measures. If they couldn't stabilize her, they were to bring her back to the operating room so we could spend whatever short time we could have with her.
We went upstairs and visited with Dr. Kaelberer who agreed with her assessment and told us our options were for her to be born that day at 4:30 pm, or we could come in the next day at 5:00 am for delivery at 6:30 am. We asked him to see if there was any other option for Wednesday. Thursday was too late, but we wanted a little more time to prepare. He sent us home and told us we would receive a call letting us know what was available. We went home, I did some final packing while Jessica tried to spend time with the kids. When they called, we were told Wednesday was fully scheduled and while we did have the early morning option, if there were any emergencies, we would be bumped, so we decided to go ahead and have her delivered that day.
I called my parents and asked them to be there, and we asked Jessica's mother and sister to bring Joseph and Rachel to the hospital after Joey woke from his nap. We arrived at the hospital at 3:00, got admitted, and settled into a room. The nurse came in and as usual, asked many, many questions as they were preparing for Lucy's arrival. I inquired if it would be possible for my dad to be admitted to the operating room to be on standby in case they were unable to do anything for Lucy, to assist in giving Lucy her a blessing. I was told that he wouldn't be able to be there for the whole procedure, but may be able to be on standby to be admitted if needed, but it would be up to the doctor as normally the only non-medical personnel admitted is the father. Fortunately, they were very understanding and permission was granted. Before I knew it, we I was suiting up and helping my dad do the same and then Jessica and I were headed to the OR.
One of Jessica's least favorite parts of the whole procedure is having the spinal block inserted. When Elizabeth was born, the anesthesiologist had to try inserting the block 8 different times over 30 minutes before he was successful. It was a truly traumatizing event and causes great fear each time it needs to happen. We were relieved to learn that Dr. Rigby was the anesthesiologist on duty. He was the anesthesiologist who did the block when Joseph was born. He did it in one attempt, so we were hoping for the best. He did only have to insert the needle one time, but it took a long time, and a lot of manipulation to get it in the right spot. For several minutes, it was very painful for Jessica, but soon enough it was complete and they began the rest of the preparations for the c-section.
I've been in the OR for our previous 3 children's birth's, and was quite familiar with the procedures, and how long it takes before they are able to get to the baby. However, this time was very quick. Before I knew it, the membrane's had been cut and all the amniotic fluid was being suctioned out. I was told I could look and being slightly unprepared, they already had Lucy out and ready to be handed through the window to the NICU. They gave me a moment to take a few pictures and then she was off. I remained with Jessica, hoping and praying that Lucy was doing okay. After about 10 minutes or so, I asked if there was a way they could check with the NICU to see how Lucy was doing. Someone in the room indicated that it was likely a good sign that we hadn't heard from them. I had about 5 seconds of relief before the nurse poked her head back and said they were returning her. Of course that meant that they were either unable to get the breathing tube in, or that her lungs were not mature enough to provide enough oxygen to sustain her life. I hadn't really cried since the day it was confirmed she had this condition. All the emotion I had been retaining came out as quickly as it could. I couldn't breathe. I couldn't speak. My eyes burned as tears rolled down my face. They brought Lucy in and handed her to me (Jessica's arms were strapped to the table). Her eyes were closed and she looked so peaceful. My dad was admitted to the OR and gave her a wonderful blessing as I was unable to do so. I did my best to hold Lucy in a way that Jessica would be able to see her. It was heartbreaking to know that she would be fading quickly and her heart would stop. The head NICU doctor came in behind me and indicated that they were able to get the tube in, but that even at high pressure she was not absorbing oxygen and she was sorry they couldn't do more for her.
Dr. Kaelberer completed Jessica's surgery and they prepared to be able to move her into recovery. The nurse came over to check Lucy and indicated that while faint and slow, she did have a heartbeat. Lucy was handed to Jessica as they wheeled her into the room. We were met by many family members, but were especially excited to see Rachel and Joseph. We also had on hand a wonderful neighbor who is a photographer ready to take pictures in the precious little time we had. We quickly gathered Joey and Rachel and had them spend as much time beside mom and Lucy as possible. They were both so excited to see their baby sister. Rachel had a smile like I've never seen, and Joey was absolutely fascinated with her. He kept calling her "my baby" and would rub her head and put his finger on various parts of her face naming each part. She was never able to open her eyes, nor respond, yet it was so wonderful that they were able to spend time with her. We have some wonderful family pictures with 3 of our living children.
At 6:50, a short 48 minutes after she was born, the nurse checked Lucy after we excused our children from our room and found that her heart had stopped. We had a wonderful opportunity to visit and hold Lucy without any tubes or other scary things attached to her.
Another small blessing we received is that while the anesthesia is wearing off from the spinal block, most women shake pretty hard. Jessica has done this with every previous delivery. However, this time, she didn't move at all. We were concerned about having the kids in during recovery that seeing that might frighten them. After all, it had frightened me when I saw it the first time, so it was truly a blessing that Joey and Rachel could visit with Jessica in such a peaceful manner.
All in all, while we don't understand all the reasons we have been asked to bring two children into this world only to give them back quickly, we have been very blessed. We have two amazing, beautiful, intelligent children here on earth, and two equally amazing celestial spirits looking out for us. We have been shown so much love by countless family, friends, and even those we don't know. We are so very grateful for the support we have received. There will be many hard days ahead for sure, but our faith in our Heavenly Father and His love, and the love from our family and friends will certainly see us through.
Lucy Danielle Goodwin
Born October 1, 2013 at 6:02 PM
3 pounds 12 ounces
14 inches long
Passed away October 1, 2013 at 6:50 PM
Tuesday, September 24, 2013
Polyhydramnios and Upcoming Events
Today's visit to the perinatologist was more eventful than we had hoped it would be. The doctor we expected to see, Dr. Rose, had been rescheduled to work at the University. She had invited the kids to come see the ultrasound and to meet her. They were able to see Lucy on the ultrasound. Rachel certainly enjoyed it more than Joey. After the ultrasound was finished the kids went out to the waiting room to sit with one of our friends while we talked to Dr. Esplin. Second to Dr. Rose for us, in the Maternal-Fetal-Medicine (MFM) group, is Dr. Sean Esplin. Dr. Esplin grew up in Doug's neighborhood, so there is a personal connection there. But, even more, he was the one that delivered Elizabeth.
Polyhydramnios
I've never mentioned polyhydramnios before because I had hoped it wouldn't be an issue this time. When I was pregnant with Elizabeth I had polyhydramnios. The Mayo Clinic says this on the topic: "Polyhydramnios (pol-ee-hy-DRAM-nee-os) is the excessive accumulation of amniotic fluid — the fluid that surrounds the baby in the uterus during pregnancy. Polyhydramnios occurs in about 1 percent of pregnancies." Generally a pregnant woman is expected to have fluid equal to 20 cm or less. They consider 25 cm to be a concern. I measure 32 cm. I am only 29 weeks (6.5 months) but am already pushing 8.5 months in uterus size.
We recently learned that excess amniotic fluid has many causes. One of which, is that the baby is unable to breath and drink the amniotic fluid to process it and send it out as waste. Elizabeth's trachea was not formed well. She couldn't breath. That was likely the cause of the polyhydramnios. And, ultimately, it was her inability to breath that took her life. We had silently hoped that perhaps, if I didn't develop polyhydramnios, it might mean that Lucy would be in a better position for life than Elizabeth was.
With Elizabeth I reached 9 month size around 32 weeks. I went into labor and delivered my sweet daughter the next week. To say that the doctors are concerned about this pregnancy is to put it mildly. So today starts a whole new set of appointments. We will meet with the NICU staff on Thursday to discuss our desires for Lucy and how we want her to be treated. They should be able to help us understand somewhat as to what to expect when Lucy arrives.
Amniotic Reduction
Next Tuesday we will go in to have an amniotic reduction. Basically it is exactly like an amniocentesis except they suck out one to two liters of fluid. If they just let the amniotic fluid continue to build I could risk going into labor at any time. That doesn't sound risky until you take into account that it stresses the scars from previous c-sections. The doctors took extra precautions to keep me from laboring with Rachel and Joey.
The risks associated with the amniotic reduction are:
1. It could cause me to go into labor.
2. It could introduce infection.
3. It could cause placental abruption. Placental abruption can cause heavy bleeding in the
mother and deprive the baby of oxygen.
The amniotic fluid will build up again within 5-9 days. I will be on bed rest on the days when they do the amniotic reduction. The procedure will have to happen once a week until delivery becomes the necessary option for either Lucy and/or me. There will be regular monitoring. I will probably return to MFM for non-stress tests (NST) 2 or 3 days after each procedure every week.
At this point I am on lock down. I'm not on bed rest. But I have to be very careful about my activity level. Lucy could come at any time.
Polyhydramnios
I've never mentioned polyhydramnios before because I had hoped it wouldn't be an issue this time. When I was pregnant with Elizabeth I had polyhydramnios. The Mayo Clinic says this on the topic: "Polyhydramnios (pol-ee-hy-DRAM-nee-os) is the excessive accumulation of amniotic fluid — the fluid that surrounds the baby in the uterus during pregnancy. Polyhydramnios occurs in about 1 percent of pregnancies." Generally a pregnant woman is expected to have fluid equal to 20 cm or less. They consider 25 cm to be a concern. I measure 32 cm. I am only 29 weeks (6.5 months) but am already pushing 8.5 months in uterus size.
We recently learned that excess amniotic fluid has many causes. One of which, is that the baby is unable to breath and drink the amniotic fluid to process it and send it out as waste. Elizabeth's trachea was not formed well. She couldn't breath. That was likely the cause of the polyhydramnios. And, ultimately, it was her inability to breath that took her life. We had silently hoped that perhaps, if I didn't develop polyhydramnios, it might mean that Lucy would be in a better position for life than Elizabeth was.
With Elizabeth I reached 9 month size around 32 weeks. I went into labor and delivered my sweet daughter the next week. To say that the doctors are concerned about this pregnancy is to put it mildly. So today starts a whole new set of appointments. We will meet with the NICU staff on Thursday to discuss our desires for Lucy and how we want her to be treated. They should be able to help us understand somewhat as to what to expect when Lucy arrives.
Amniotic Reduction
Next Tuesday we will go in to have an amniotic reduction. Basically it is exactly like an amniocentesis except they suck out one to two liters of fluid. If they just let the amniotic fluid continue to build I could risk going into labor at any time. That doesn't sound risky until you take into account that it stresses the scars from previous c-sections. The doctors took extra precautions to keep me from laboring with Rachel and Joey.
The risks associated with the amniotic reduction are:
1. It could cause me to go into labor.
2. It could introduce infection.
3. It could cause placental abruption. Placental abruption can cause heavy bleeding in the
mother and deprive the baby of oxygen.
The amniotic fluid will build up again within 5-9 days. I will be on bed rest on the days when they do the amniotic reduction. The procedure will have to happen once a week until delivery becomes the necessary option for either Lucy and/or me. There will be regular monitoring. I will probably return to MFM for non-stress tests (NST) 2 or 3 days after each procedure every week.
At this point I am on lock down. I'm not on bed rest. But I have to be very careful about my activity level. Lucy could come at any time.
Monday, September 9, 2013
Six Months!
It is exciting and crazy to reach this milestone. We are officially in the final trimester! As thrilled as I am to be closing in on the final days of this pregnancy, I realize I am terrified. I feel like I am picking up speed -- hurdling towards a brick wall. Sometime between now and Thanksgiving I will undergo surgery. I had a full panic attack when I walked into the O.R. prepping for Joey's arrival. But I was able to cling to a knowledge that I'd have a little baby boy coming home with me. That gave me the grounding I needed to make it through. I have no such guarantee this time. The uncertainty already envelops me in fear and pain. There is no guarantee Lucy will arrive safely into this world. We will probably have Rachel and Joey at the hospital so they can meet her. What if they don't get to? What if the sight of their mother, post surgery, scares them? Is there going to be a funeral to attend when I leave the hospital?
We are trying to focus on taking things one day at a time. I am trying to rejoice in the experience of loving this sweetheart in my belly. She kicks so hard you'd think she was perfect and healthy. She IS perfect. I love her more each and every day.
I realize it's been a while since I've updated you. So, this is what we know...
We are trying to focus on taking things one day at a time. I am trying to rejoice in the experience of loving this sweetheart in my belly. She kicks so hard you'd think she was perfect and healthy. She IS perfect. I love her more each and every day.
I realize it's been a while since I've updated you. So, this is what we know...
- Lucy has the gene for Campomelic Dysplasia.
- Her life expectancy is most likely measured in days.
- There is no way of knowing the extent of her illness until she arrives.
- We do not know, nor do we care, who is the carrier of the gene.
Tuesday, August 20, 2013
Build-A-Bear
Doug and I started a tradition when we were expecting our first baby,
Elizabeth. We obtained a recording of Elizabeth's heartbeat. Then we
went and built a bear with a sound box in the chest. Every time you
press the button you can hear Elizabeth's heartbeat.
The idea was that the next time we got pregnant, Elizabeth would be able to help make the next animal. It was with mixed excitement and grief that we went to the Build-a-Bear workshop in 2009 to make an animal for Rachel. Again, we obtained a recording of her heartbeat to personalize it even more.
In January 2011 we returned for the 3rd time to build a bear. This time Rachel took a leading role in helping make this special toy for Joseph.
We were thrilled to have a 3rd heartbeat to add to our collection.
On August 13th we went as a family to build a bear for Lucy. The kids showered Lucy's monkey with love and affection.
And now we have a sweet set of four. Four children, four heartbeats, four toys, four times the love.
The idea was that the next time we got pregnant, Elizabeth would be able to help make the next animal. It was with mixed excitement and grief that we went to the Build-a-Bear workshop in 2009 to make an animal for Rachel. Again, we obtained a recording of her heartbeat to personalize it even more.
In January 2011 we returned for the 3rd time to build a bear. This time Rachel took a leading role in helping make this special toy for Joseph.
We were thrilled to have a 3rd heartbeat to add to our collection.
On August 13th we went as a family to build a bear for Lucy. The kids showered Lucy's monkey with love and affection.
And now we have a sweet set of four. Four children, four heartbeats, four toys, four times the love.
Wednesday, July 31, 2013
Lucy Danielle Goodwin
We have been thinking about names since the moment we knew we were having a baby. We originally chose to name our daughter Charlotte Jessica Goodwin. Charlotte is Doug's Mother's name. Jessica, obviously, is my name. But, when we received the diagnosis of Campomelic Dysplasia we were hesitant to go forward. We were concerned that it might be hard for us and others to see the name Charlotte and the name Jessica on a headstone.
So, we went back to the drawing board. In my search for the perfect name I ran across the story of Daniel in the Lion's Den. The short version is that Daniel was thrown in the Lion's Den and left overnight. They expected him to die. The next morning they returned to find that he had been miraculously saved. What a beautiful analogy to my darling baby. She is in her own den of lions. The medical community expects that she will not survive. But, through faith and miracles we may yet have a little time with her before she returns to her heavenly home.
We chose Lucy because we simply liked the name. On further inspection we realized that one of our favorite figures in LDS history is Lucy Mack Smith. Lucy, from what I remember, was not even 5 feet tall. Yet she embodied what Alma described, "by bsmall and simple things are great things brought to pass; and small means in many instances doth confound the wise." Faith and miracles were Lucy's constant companion. How fitting is the name Lucy? Our little Lucy's limbs are already short for her age. And, we expect that faith and miracles will happen in her life and ours. She may yet "confound the wise."
We are excited to have Lucy Danielle Goodwin as part of our family. No matter the outcome. No matter how long she lives. No matter what others may think. Lucy is a miracle and a blessing. We will celebrate her life for years to come.
So, we went back to the drawing board. In my search for the perfect name I ran across the story of Daniel in the Lion's Den. The short version is that Daniel was thrown in the Lion's Den and left overnight. They expected him to die. The next morning they returned to find that he had been miraculously saved. What a beautiful analogy to my darling baby. She is in her own den of lions. The medical community expects that she will not survive. But, through faith and miracles we may yet have a little time with her before she returns to her heavenly home.
We chose Lucy because we simply liked the name. On further inspection we realized that one of our favorite figures in LDS history is Lucy Mack Smith. Lucy, from what I remember, was not even 5 feet tall. Yet she embodied what Alma described, "by bsmall and simple things are great things brought to pass; and small means in many instances doth confound the wise." Faith and miracles were Lucy's constant companion. How fitting is the name Lucy? Our little Lucy's limbs are already short for her age. And, we expect that faith and miracles will happen in her life and ours. She may yet "confound the wise."
We are excited to have Lucy Danielle Goodwin as part of our family. No matter the outcome. No matter how long she lives. No matter what others may think. Lucy is a miracle and a blessing. We will celebrate her life for years to come.
Tuesday, July 23, 2013
Dr. Kaelberer
Dr. Rose (our perinatologist) is out of town. The first appointment we could get with her was August 13th. It is difficult waiting with so many unanswered questions. But, we were able to visit with Dr. Kaelberer today which was helpful and comforting.
Finding Dr. K was a happy accident. We wanted to start a family soon after we were married. We figured that we would need to start with a visit to an OB. Dr. K was the closest doctor to us with an opening. I'm not usually that flippant about finding a doctor. He watched over us during Elizabeth's pregnancy. Elizabeth was delivered by a high risk doctor at a hospital with which Dr. K was not affiliated. He delivered both Rachel and Joseph. He takes the time to answer questions and always makes us feel like his favorite family.
Dr. Kaelberer is kind and sensitive. It was reassuring to talk to him about our current situation. He says that every time we see Dr. Rose she calls and talk with him at length. We asked if we should visit another perinatologist while she is away. He said that Dr. Rose is the absolute genetic guru and not to waste time visiting anyone else.
We learned today that Dr. Kaelberer will be the one to deliver our special baby. And, to our relief, she will not require the drastic C-Section that Elizabeth needed. With Elizabeth they made an upside down T incision, extra wide and tall, so they could just lift her out. Remember they thought she had Osteogenesis Imperfecta and would break with a regular delivery. He will need to be careful with this delivery. It will probably require and extra wide incision. But, it should still be easier. The goal, as always, is to deliver the baby at an optimum time for her and for me. The goal is 37 weeks. Elizabeth came at 33 weeks. Doug and I expect that baby girl will probably come somewhere between 33 weeks (October 20th) and 37 weeks (November 17th).
As for future children...We will have to wait and see. Dr. K can tell us during the delivery whether my body/uterus can handle another pregnancy. Dr. Rose will help us from the genetic side of things.
Finding Dr. K was a happy accident. We wanted to start a family soon after we were married. We figured that we would need to start with a visit to an OB. Dr. K was the closest doctor to us with an opening. I'm not usually that flippant about finding a doctor. He watched over us during Elizabeth's pregnancy. Elizabeth was delivered by a high risk doctor at a hospital with which Dr. K was not affiliated. He delivered both Rachel and Joseph. He takes the time to answer questions and always makes us feel like his favorite family.
Dr. Kaelberer is kind and sensitive. It was reassuring to talk to him about our current situation. He says that every time we see Dr. Rose she calls and talk with him at length. We asked if we should visit another perinatologist while she is away. He said that Dr. Rose is the absolute genetic guru and not to waste time visiting anyone else.
We learned today that Dr. Kaelberer will be the one to deliver our special baby. And, to our relief, she will not require the drastic C-Section that Elizabeth needed. With Elizabeth they made an upside down T incision, extra wide and tall, so they could just lift her out. Remember they thought she had Osteogenesis Imperfecta and would break with a regular delivery. He will need to be careful with this delivery. It will probably require and extra wide incision. But, it should still be easier. The goal, as always, is to deliver the baby at an optimum time for her and for me. The goal is 37 weeks. Elizabeth came at 33 weeks. Doug and I expect that baby girl will probably come somewhere between 33 weeks (October 20th) and 37 weeks (November 17th).
As for future children...We will have to wait and see. Dr. K can tell us during the delivery whether my body/uterus can handle another pregnancy. Dr. Rose will help us from the genetic side of things.
Sunday, July 21, 2013
The Long Trek Home
Texas was just the distraction we needed. We enjoyed being with family and doing something completely different. But, like all good things, it had to come to an end.
On Wednesday afternoon we drove to Lubbock, TX planning on driving from there to St. George, UT the next day for a funeral on Friday. Our car had other plans. On Thursday, 15 some odd miles from Santa Rosa, NM, during the heat of the day, the car broke down. We were towed to Santa Rosa and 24 hours later we were on the road again. A couple of hours into day 3 of our trek home we received a call from our genetic counselor. The results were in. Our baby girl has the same genetic mutation on the SOX 9 gene (located on one of the X chromosomes). Our littlest has Campomelic Dysplasia.
We were 12 hours drive from Texas, 12 hours to Utah. Paralyzed with sadness. We called our parents, texted many friends and family members, posted the news on FaceBook and began praying we would be able to move. Prayers were being said by friends and family all over the world. We made it to Cortez, CO by willpower and prayer. And on Saturday, Day 4 of our trip, we arrived home safe, sore, sad and so relieved.
You are probably wondering, "What's next?"
Well, this week we will meet up with MFM for another ultrasound. We will meet with my regular OB. I am 20 weeks pregnant. There are 17-18 weeks to go. We will pray and pretend that nothing is wrong. We will play in the park and watch movies.
After this week we should have answers to some of our questions:
"What happens now?"
"What is the likelihood that our sweet baby girl will live? How long?"
"What kind of life would she live?"
"Will the C-section be drastic like when Elizabeth arrived in the world or standard?"
"If I carry the baby to term will my body be able to host another child? Or is this it for our family?"
"If I am able to have another baby is there any way of ensuring that the next child does not have the same Campomelic gene mutation?"
...
I will post more information as I receive answers.
On Wednesday afternoon we drove to Lubbock, TX planning on driving from there to St. George, UT the next day for a funeral on Friday. Our car had other plans. On Thursday, 15 some odd miles from Santa Rosa, NM, during the heat of the day, the car broke down. We were towed to Santa Rosa and 24 hours later we were on the road again. A couple of hours into day 3 of our trek home we received a call from our genetic counselor. The results were in. Our baby girl has the same genetic mutation on the SOX 9 gene (located on one of the X chromosomes). Our littlest has Campomelic Dysplasia.
We were 12 hours drive from Texas, 12 hours to Utah. Paralyzed with sadness. We called our parents, texted many friends and family members, posted the news on FaceBook and began praying we would be able to move. Prayers were being said by friends and family all over the world. We made it to Cortez, CO by willpower and prayer. And on Saturday, Day 4 of our trip, we arrived home safe, sore, sad and so relieved.
You are probably wondering, "What's next?"
Well, this week we will meet up with MFM for another ultrasound. We will meet with my regular OB. I am 20 weeks pregnant. There are 17-18 weeks to go. We will pray and pretend that nothing is wrong. We will play in the park and watch movies.
After this week we should have answers to some of our questions:
"What happens now?"
"What is the likelihood that our sweet baby girl will live? How long?"
"What kind of life would she live?"
"Will the C-section be drastic like when Elizabeth arrived in the world or standard?"
"If I carry the baby to term will my body be able to host another child? Or is this it for our family?"
"If I am able to have another baby is there any way of ensuring that the next child does not have the same Campomelic gene mutation?"
...
I will post more information as I receive answers.
Thursday, July 11, 2013
It's A Girl!
The genetic counselor called on July 9th. The chromosomes look normal and we are expecting a baby girl. This is significant because the ultrasound showed girly parts but if the chromosomes had been boy then it would have been almost guaranteed that the baby have Campomelic Dysplasia.
So now we are just waiting to hear back from Johns Hopkins. If the SOX9 gene shows as normal then they will send more cells to be tested for Osteogenesis Imperfecta. We are still praying for a miracle for our miracle girl.
Meanwhile we get to start choosing a name.
So now we are just waiting to hear back from Johns Hopkins. If the SOX9 gene shows as normal then they will send more cells to be tested for Osteogenesis Imperfecta. We are still praying for a miracle for our miracle girl.
Meanwhile we get to start choosing a name.
Amniocentesis and Our Escape
We returned to MFM on June 28th for the scheduled ultrasound and amniocentesis. We were thrilled to learn that some of the hydrops had gone from the baby's body. Nothing had changed other than that.
I was prepared for the amniocentesis. I had an amnio when I was pregnant with Elizabeth. It was the easiest procedure I'd ever had that included a needle. It was far easier than getting my blood drawn. It turns out that it is easier when you are further along in the pregnancy. With Elizabeth I was around 28 weeks. This time I was only 17 weeks. It was definitely more painful. But, I'd still say that it is easier than getting my blood drawn. And speaking of blood. I was ecstatic (note the sarcasm) to find out that I needed a bunch of blood drawn at the same visit.
I went down to the lab where a young man named Brad invited me back to prep for my blood draw. He had a lady shadowing him and a glance at his badge revealed that he was a student phlebotomist. I told him that he was welcome to feel my veins but that I needed the best person on staff to do the actual draw. The shadow lady introduced herself and began feeling for good veins. A few minutes later she says, "you really DO have difficult veins." She had 2 options but didn't feel secure about trying either of them. Thankfully she was able to get it on the first stick.
Now the waiting begins, or continues. It will take 1 week to grow the baby's DNA cells. Then it will be a week or two to get chromosomal results (i.e. downs syndrome, turner syndrome, gender, etc.). The cells will be sent to Johns Hopkins to be tested for Campomelic Dysplasia. It's just a waiting game.
We finished up at the hospital and headed home. We gathered up our children. We finished gathering our stuff. Then we began the 22 hour drive to my parent's house in Texas. Rachel and Joey were amazing. Nobody complained until the last 15 minutes of the drive when Joey had had enough.
We've been enjoying the distraction family has provided. Doug has been working from an office in my Dad's office. My dad's office is on a large plot of land. We use their 4WD cart to drive to and fro from one house to another. We are so busy having fun that we haven't spent a lot of time worrying about the results of the test.
I was prepared for the amniocentesis. I had an amnio when I was pregnant with Elizabeth. It was the easiest procedure I'd ever had that included a needle. It was far easier than getting my blood drawn. It turns out that it is easier when you are further along in the pregnancy. With Elizabeth I was around 28 weeks. This time I was only 17 weeks. It was definitely more painful. But, I'd still say that it is easier than getting my blood drawn. And speaking of blood. I was ecstatic (note the sarcasm) to find out that I needed a bunch of blood drawn at the same visit.
I went down to the lab where a young man named Brad invited me back to prep for my blood draw. He had a lady shadowing him and a glance at his badge revealed that he was a student phlebotomist. I told him that he was welcome to feel my veins but that I needed the best person on staff to do the actual draw. The shadow lady introduced herself and began feeling for good veins. A few minutes later she says, "you really DO have difficult veins." She had 2 options but didn't feel secure about trying either of them. Thankfully she was able to get it on the first stick.
Now the waiting begins, or continues. It will take 1 week to grow the baby's DNA cells. Then it will be a week or two to get chromosomal results (i.e. downs syndrome, turner syndrome, gender, etc.). The cells will be sent to Johns Hopkins to be tested for Campomelic Dysplasia. It's just a waiting game.
We finished up at the hospital and headed home. We gathered up our children. We finished gathering our stuff. Then we began the 22 hour drive to my parent's house in Texas. Rachel and Joey were amazing. Nobody complained until the last 15 minutes of the drive when Joey had had enough.
We've been enjoying the distraction family has provided. Doug has been working from an office in my Dad's office. My dad's office is on a large plot of land. We use their 4WD cart to drive to and fro from one house to another. We are so busy having fun that we haven't spent a lot of time worrying about the results of the test.
Tuesday, July 9, 2013
What?!
On May 10th we went to our first prenatal doctor's visit. Our doctor, Dr. Kaelberer, was thrilled for us. He wasn't able to get a good view of the baby and a definitive measurement so he scheduled a follow up ultrasound for June 10th. On June 10th we were 14 weeks along. It should be easy to get a good measurement of the baby. Plus we were hoping to find out the gender.
The sonographer spent a lot of time with us. We heard and saw the heartbeat. We watched as the baby wiggled and danced. It was wonderful. I was completely thrilled to see my little one on the screen. We went into our room and waited for our doctor to join us. This would be the first indication of something being not quite right. After only a couple of questions about my health he asked what the chances were of a recurrence of Campomelic Dysplasia. I told him 1 in 1000. Not spectacular odds but certainly not likely. Besides we already have 2 perfectly healthy children at home. Dr. Kaelberer explained that there was a thickening on the back of the baby's neck and something might be wrong with the legs. My elation fell into horror. Not again! What Doug hadn't told me was that some of the long bones were already measuring short. That was the first indication that something was wrong with Elizabeth. Dr. K looked frightened and wanted us to meet with Maternal-Fetal-Medicine (MFM), the high risk pregnancy unit, as soon as possible. They scheduled us for the first open appointment -- July 3rd.
Two days later we received a call from MFM. Dr. K had spoken to the head of MFM, the doctor that had worked with us before Elizabeth's birth, Dr. Nancy Rose. Dr. Rose was going to come in early the next Monday to squeeze us in! I was partially thrilled, and very nervous. Dr. Rose wouldn't be coming in early unless there was something to be concerned about.
On the morning of June 17th we began our incredible journey. The sonographer spent a large amount of time and even took 4D pictures of the baby. It was easy for us to see that the baby's femurs (long leg bones) were fragmented and that the legs were twisted.
Dr. Rose came in and lowered the boom. She showed us how the baby had hydrops, a condition where fluid collects in the body under the skin and other places it shouldn't be. Hydrops is often an indication of heart defects. It often accompanies chromosomal abnormalities and diseases like Downs Sydrome, Turner Syndrome and others. She showed us the thick neck skin. She showed us the broken bones then told us that she was almost positive that it was Campomelic Dysplasia. I was too stunned to cry.
Elizabeth had a mutation on her SOX-9 gene that Johns Hopkins had never seen before. Our blood was tested to see if were were carriers of that mutation. We did not have it. I thought that having another CD baby was virtually impossible. She informed us that there is a rare thing called gonadal mosaicism. When this happens the DNA in the individual's blood is different from the blood in the reproductive organs. Meaning that the DNA Doug or I live with is possibly different from the DNA we give our babies. What?!
The next step was to get an amniocentesis. The wrench in the works is that between 14 and 17 weeks is the time that the amniotic sac fuses with the placenta. An amnio cannot be done until the fusion is complete. So we scheduled a return visit for June 28th (11 days later).
The sonographer spent a lot of time with us. We heard and saw the heartbeat. We watched as the baby wiggled and danced. It was wonderful. I was completely thrilled to see my little one on the screen. We went into our room and waited for our doctor to join us. This would be the first indication of something being not quite right. After only a couple of questions about my health he asked what the chances were of a recurrence of Campomelic Dysplasia. I told him 1 in 1000. Not spectacular odds but certainly not likely. Besides we already have 2 perfectly healthy children at home. Dr. Kaelberer explained that there was a thickening on the back of the baby's neck and something might be wrong with the legs. My elation fell into horror. Not again! What Doug hadn't told me was that some of the long bones were already measuring short. That was the first indication that something was wrong with Elizabeth. Dr. K looked frightened and wanted us to meet with Maternal-Fetal-Medicine (MFM), the high risk pregnancy unit, as soon as possible. They scheduled us for the first open appointment -- July 3rd.
Two days later we received a call from MFM. Dr. K had spoken to the head of MFM, the doctor that had worked with us before Elizabeth's birth, Dr. Nancy Rose. Dr. Rose was going to come in early the next Monday to squeeze us in! I was partially thrilled, and very nervous. Dr. Rose wouldn't be coming in early unless there was something to be concerned about.
On the morning of June 17th we began our incredible journey. The sonographer spent a large amount of time and even took 4D pictures of the baby. It was easy for us to see that the baby's femurs (long leg bones) were fragmented and that the legs were twisted.
Dr. Rose came in and lowered the boom. She showed us how the baby had hydrops, a condition where fluid collects in the body under the skin and other places it shouldn't be. Hydrops is often an indication of heart defects. It often accompanies chromosomal abnormalities and diseases like Downs Sydrome, Turner Syndrome and others. She showed us the thick neck skin. She showed us the broken bones then told us that she was almost positive that it was Campomelic Dysplasia. I was too stunned to cry.
Elizabeth had a mutation on her SOX-9 gene that Johns Hopkins had never seen before. Our blood was tested to see if were were carriers of that mutation. We did not have it. I thought that having another CD baby was virtually impossible. She informed us that there is a rare thing called gonadal mosaicism. When this happens the DNA in the individual's blood is different from the blood in the reproductive organs. Meaning that the DNA Doug or I live with is possibly different from the DNA we give our babies. What?!
The next step was to get an amniocentesis. The wrench in the works is that between 14 and 17 weeks is the time that the amniotic sac fuses with the placenta. An amnio cannot be done until the fusion is complete. So we scheduled a return visit for June 28th (11 days later).
Announcing Baby #4
Announcing Baby #4
Okay. On Saturday March 30th, Doug suggested that I take a pregnancy test the next morning. I told him that I didn't want to because I didn't want to get bad news on Easter. He agreed. What he didn't know was that I had been secretly planning on a very personal April Fool's Day joke for Monday. I hadn't taken a pregnancy test but I knew I was pregnant this time. On Easter morning I took the test because Doug wouldn't expect it. When it came out positive I realized that I couldn't wait even 24 hours to tell Doug. So I put my plan in motion a day early.
I handed Doug an old negative pregnancy test that I had stashed in my drawer. Yes, I know, icky. I placed it in his hand and retreated from the room. I knew I couldn't keep a straight face. Running away was the only answer. Immediately Doug began asking, "how old is this test?" (meaning had it been 2 minutes or 20 minutes since I took it.) I began to lose my nerve. I figured he suspected that it was an old test because of the black mark in the window. I let him ask a few more times. Then I realized there was worry in his voice and I couldn't hold out on him. I'm just not that mean. I had planned on keeping it to myself for at least 30 minutes.
I went back to the bathroom, retrieved the real test, then returned to Doug. I placed the new test in his hand saying, "I gave you the wrong one." The worry melted off of his face and was replaced by astonished disbelief, then pure joy. I'm sure he didn't hear me say "Happy Early April Fool's" as he hurried to give me a hug. It was fun as a joke. But it was wonderful to think about the significance of Easter and all 4 of our kids through out the day.
The next day I opened a fortune cookie and found this inside. Hmmmm.
Over the next three weeks we leaked to a handful of people. We knew that we couldn't tell anyone else before we told the family. We concocted a plan. Rachel's birthday party was the perfect venue for a surprise announcement. Most of Doug's family was here. My parents and Nanette were here via facetime. And my good friend Bethany and her husband were here. It was the perfect time. The family members who were not here all received this little video via text message. Don't you just love technology!
Here's the link: Rachel's Favorite Present
The plan was to wait 3 more weeks and announce publicly on Mother's Day. In that time we had family photos taken. There were two announcement ideas that I was still toying with. The first was a picture of all of us reading books about babies. Our faces would be hidden or obscured as our books were lifted up and shown to the camera. It just wasn't possible with a rambunctious 2 year old in the mix. However, I really like this one.
I loved how Doug was studying his book. He looks like he really wants to know "What Daddies Do Best."
The shoes won in the end. How perfect! The same shoes used to tell our family are immortalized in our photo. Our due date is officially December 8th. This little one will be scheduled for a c-section somewhere between November 17th and November 27th. We couldn't be more excited.
Rachel and Joseph
Elizabeth was born via radical C-section. So we were required to wait at least a year before getting pregnant again. We didn't wait any longer than that. We excitedly welcomed Rachel to the earth on April 21, 2009. She was perfectly healthy. She roomed with me in the hospital until I was released to go home. Bringing her home is one of the sweetest, happiest moments in my life.
Two years later, on March 7, 2011, we were blessed once again with our son, Joseph. He was in the NICU for 6 excruciating days. Again, bringing him home lives as one of my very favorite memories ever.
Rachel and Joseph's presence in our home is a daily miracle. We can't imagine our lives without them. Their laughter and sweet sunny dispositions brings the warmth of the Savior's love to our home and hearts. It is only natural that we would want to grow our family and provide Rachel and Joey with another sister or brother.
Campomelic Dysplasia
Campomelic dysplasia is one of the more rare forms of congenital short-limb dwarfism. Its incidence is approximately 1 in 111,000 to 1 in 200,000 live births. The term "campomelic" or "camptomelic" is of Greek origin and literally means "bent limb." Affected individuals are typically born with bowing of the long bones in the legs, and they are occasionally born with bowing in the arms. Bowing can cause characteristic skin dimples to form over the curved bone, especially on the lower legs. People with campomelic dysplasia also usually have short legs, dislocated hips, underdeveloped shoulder blades, 11 pairs of ribs instead of 12, bone abnormalities in the neck, and feet that are abnormally rotated (clubfeet).
Campomelic dysplasia is caused by a mutation in the SOX-9 gene, localized to chromosome 17. The SOX-9 gene is responsible for normal cartilage development and sexual development. 75% of males present as females in their genitalia.
Only a few people with campomelic dysplasia survive past infancy. As these individuals age, they may develop an abnormal curvature of the spine (scoliosis) and other spine abnormalities that compress the spinal cord. People with campomelic dysplasia may also have short stature and hearing loss.
Elizabeth
Elizabeth Ann Goodwin was born on June 25, 2007.
Doug and I had been eagerly anticipating her arrival for 33 weeks.
We knew that something was wrong with her little body before she was born. We could see broken bones on the ultrasound. They suspected that she had Osteogenesis Imperfecta (OI), also known as broken bone syndrome. We knew she would have a difficult life. Our lives, by extension, would be complicated and difficult. It didn't matter. We had waited and wished to have children our whole lives. We dreamed of the adventures daily life, holidays, family vacations, and numerous doctors visits would afford.
The instant she arrived she was whisked away into the Neonatal Intensive Care Unit (NICU). Her life was sustained by the respirator and by kind, competent, exceptional nurses and doctors. It was easy to see that she didn't have OI. After a myriad of tests. We knew she had Campomelic Dysplasia, a rare form of dwarfism.
The next days were filled with a roller-coaster of emotions. It seemed like her prognosis changed hourly. Doug and I spent every possible minute with her. We were only allowed to hold her in our arms twice during her short life. It was too difficult for her body.
So, we would hold her hand, stroke her head, sing to her, talk to her, and pray with her. It would fill us with awe as she would turn at the sound of our voices. She would often attempt to open her eyes. She would be able to breath room air and get the oxygen she needed when Doug and I were there. (She would still be on the respirator just no supplemental oxygen.)
Our families and a few close friends rushed to our side. Thanks to my sister Rebecca we have more than a thousand photos and a beautiful video to share.
Then, all too soon, it was time to say goodbye. She passed away in our arms 6 short days after her birth. Her tiny chest cavity was just too small for her heart and lungs to properly function.
The next week was a blur as we prepared for the funeral, and buried our little angel. It was our faith in Jesus Christ and his eternal plan that gave us the courage to get out of bed. It is still that faith that binds us together and strengthens us through the days. We have seen numerous blessings in our lives and the lives of others because of Elizabeth's brief sojourn on earth. We are so proud to have been chosen to be her parents.
Click on this link to watch Elizabeth's video.
Doug and I had been eagerly anticipating her arrival for 33 weeks.
We knew that something was wrong with her little body before she was born. We could see broken bones on the ultrasound. They suspected that she had Osteogenesis Imperfecta (OI), also known as broken bone syndrome. We knew she would have a difficult life. Our lives, by extension, would be complicated and difficult. It didn't matter. We had waited and wished to have children our whole lives. We dreamed of the adventures daily life, holidays, family vacations, and numerous doctors visits would afford.
The instant she arrived she was whisked away into the Neonatal Intensive Care Unit (NICU). Her life was sustained by the respirator and by kind, competent, exceptional nurses and doctors. It was easy to see that she didn't have OI. After a myriad of tests. We knew she had Campomelic Dysplasia, a rare form of dwarfism.
The next days were filled with a roller-coaster of emotions. It seemed like her prognosis changed hourly. Doug and I spent every possible minute with her. We were only allowed to hold her in our arms twice during her short life. It was too difficult for her body.
So, we would hold her hand, stroke her head, sing to her, talk to her, and pray with her. It would fill us with awe as she would turn at the sound of our voices. She would often attempt to open her eyes. She would be able to breath room air and get the oxygen she needed when Doug and I were there. (She would still be on the respirator just no supplemental oxygen.)
Our families and a few close friends rushed to our side. Thanks to my sister Rebecca we have more than a thousand photos and a beautiful video to share.
Then, all too soon, it was time to say goodbye. She passed away in our arms 6 short days after her birth. Her tiny chest cavity was just too small for her heart and lungs to properly function.
The next week was a blur as we prepared for the funeral, and buried our little angel. It was our faith in Jesus Christ and his eternal plan that gave us the courage to get out of bed. It is still that faith that binds us together and strengthens us through the days. We have seen numerous blessings in our lives and the lives of others because of Elizabeth's brief sojourn on earth. We are so proud to have been chosen to be her parents.
Click on this link to watch Elizabeth's video.
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