Thursday, August 20, 2015

Baby Steps

This shows our journey from our meeting to our newest endeavor into IVF and PGD.

Friday, October 4, 2013

Lucy's Funeral

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.  

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







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.


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...
  • 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.
Do you have questions?  I'm happy to answer.  Just leave a comment.

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.

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.