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.
Tuesday, September 24, 2013
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.
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