The Beginning

(Originally posted on 10/31/12)

Casey and I want to let you know the latest about our little Elliot. We are still processing it all but if you have questions about what we are going through or LCDH please ask us.  We are still in the process of learning as much as we can and your questions will help us do so.

Four weeks ago we went to an ultrasound to determine the gender of our baby. During the ultrasound they weren’t able to get all of the pictures and measurements that they wanted because he was measuring two weeks small for his age and was not cooperating (he kept hiding his face and moving all around.) Because of this we scheduled a follow up ultrasound for a week ago Thursday.

Thursday was more of the same. He was moving all over and they couldn’t get all they needed. Because he was still measuring small we were sent to a high-risk pregnancy specialist this Monday.

At the appointment the ultrasound tech explained what she was seeing. It was nice that she was able to do that rather than have us wait in silence. It took 45 minutes during which she informed us that the stomach was too high in the body, although everything else seemed to be on track. She had never seen anything quite like that.

She went out and went over the results with the doctor. Lucky/unlucky for us the doctor had seen this before. Our little Elliot has been diagnosed with a Left Congenital Diaphragmatic Hernia. We still don’t understand it completely but basically a hole in the diaphragm allowed the stomach to move up into the chest and it is pushing the heart to the right and crowding the lungs. There is a 100 % certainty that Elliot will need to have surgery to place his organs in their correct positions.

Along with CDH their is a heightened chance of a chromosome abnormality such as Down Syndrome.

It should not affect Casey’s health or her ability to carry Elliot full term, in fact the best case scenario is that she does carry him full term, which would allow the organs to develop further. The stronger he is, the quicker and more successful the surgery should be.

As you can imagine there have been many tears shed in our home as well as in our parents homes. We would appreciate your thoughts and prayers at this time and promise to keep you updated as things progress.

Tomorrow we are meeting with our new OBYN (our care has been transferred to the high-risk pregnancy specialists) and with a Genetic Counselor who will go over the risks we are facing with the chromosomal abnormalities. In addition we have a couple more ultrasounds and visits scheduled.

For more information on CDH you can visit. www.chop.edu. The doctor we are now seeing came from Philadelphia and is experienced in CDH.

Once again we love you and are grateful for your thoughts and prayers at this time.

Love,

Jordan, Casey and Elliot

Appointments 2 and 3

(Originally posted on 10/31/12)

Needless to say we had a pretty emotional week with lots of crying, no appetites and very little sleep.  Friday we had another appointment to learn more and came away feeling much better.

There are three main things that they need to monitor:

  1. Are the lungs developing enough tissue to breathe?  With the stomach in the diaphragm there isn’t a lot of room for the lungs to grow.  That is the key to post birth success.
  2. Where is the liver positioned?  For some reason the liver doesn’t move well.  The connections tend to get kinked and that is fatal.  Right now it appears that none of his liver has made it into the diaphragm.  Generally, that is great news because at this point if it isn’t there it rarely will move later.
  3. Is the hole in the heart closing on its own?  The type of hole that he has will close on its own 9/10 times.

That is what we learned from the OBGYN.  We left with a lot more hope than we came in with.  After we met with him we met with a genetic counselor that talked to us about the risk of a chromosomal abnormality.

Basically there is a 40% chance that this was caused by some sort of chromosomal abnormality.  If there is an abnormality there is only a 13% chance that Elliot will survive.

There is a blood test they can do now on Casey to find out with 99% accuracy if Elliot has down syndrome. There are two other major abnormalities that it can test for, Edwards Syndrome and Patau Syndrome.  It is rare that a child with either of these will survive longer then a year. The blood test is 97% accurate for one of them and 77% accurate for the other.  Casey had her blood drawn and we are now waiting a week to a week and a half to find out that news.

If that comes back negative Elliot’s chance of survival is going to be about 80%.  He will be born and we will get to touch him but not hold him.  He will then be in the NICU until he is strong enough for surgery, and then for a while afterwards.

We are trying to be as positive as possible and will be fasting next Sunday, November the 4th with our families for baby Elliot.  We would love to have you participate in the fast.

Love,

Jordan, Casey, and Elliot

its a marathon not a sprint

(Originally posted on 11/5/12)

We started our week with a Monday and almost six hours of doctor’s appointments.

Baby doctors are amazing. We always go to appointments feeling very nervous but leave feeling like we are getting the best care. We first meet with a neonatologist named Dr. Greg Martin. Who taught us a few things today…

1. I will be delivering Elliot at Banner’s Good Samaritan. I will be induced somewhere around February 28th.  They prefer a planned delivery so they can have all the doctors we will need on staff.

2. If Elliot requires open surgery he will remain at Good Samaritan. If the surgery can be done with scopes (best case scenario) he will be transferred to Phoenix Children’s Hospital.

3. We should plan on a NICU stay of at least 6 weeks, but could be months

4. Elliot will be his 6th patient this year with CDH. One just had her surgery today, one was only given “comfort care” until they passed and the others have had success.

5. There will be a lot of mystery until Elliot is born.

We got a tour of the NICU and we meet a CDH mother named Joy. I had never met Joy before but we have a lot of friends in common so, I knew of her and her baby Lynlee.  You can read her story at joyandaaron.blogspot.com. Their sweet baby had surgery today and could use some extra prayers!!

After that Elliot got a heart Echo. They wanted to get a closer look at the small hole in his heart. Unfortunately he’s a little rascal and doesn’t like to participate during ultrasounds. He never shows his face and had either an arm or leg over his heart. They are now sending us to a cardiologist who will hopefully have better luck. The good news is what they could see looked good.  His heart is definitely being pushed to the right and is slightly rotated which is expected with CDH. They did say his heart isn’t as rotated as some of the others they have seen.

During the Echo we got a surprise visit from the genetic counselor. He had gone to the front desk to get our number to call us with the blood test results when he found out we were in the office.  We are so happy to know that the tests came back negative, meaning that Elliot doesn’t have any of the big three chromosomal abnormalities!!!

Some more exciting news… I felt Elliot move for the first time! What an amazing feeling. Some days I wish he could just stay in there forever.

We would like to thank all of you who participated in fasting on behalf of Elliot with us this weekend.  It’s amazing how much comfort and peace you can feel during such difficult times. There isn’t a day that passes with out some tears but we are remaining positive and hopeful. Your prayers are felt and greatly appreciated.

I would post a pregnancy picture but I seriously got asked the other day if I had lost weight. Maybe in a few weeks I will look pregnant. Until then enjoy a picture of Elliot!

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Ticker Talk

(Originally posted on 11/15/12)

On Wednesday November 14th we meet with a pediatric cardiologist (heart doctor).  Even though Jordan and I are not morning people it was nice having the appointment at 7:30 because I didn’t have enough time to feel nervous.

First an ultrasound tech studied our little Elliot for 45min. Unfortunately she wasn’t allowed to give us any information so we sat there in silence starring at a screen we didn’t understand. I understand why the doctor is the one to give us all the information but she could have said something!

After that the doctor came in and did another 10 minutes of ultrasounds. He mumbled some words to the nurse and ultrasound tech.  At that point I was nervous. They were speaking in doctor code and I felt I had no control over that hour of my life.  We then met with the doctor to go over the ultrasound.

He first showed us two images of hearts, one of a fetus heart and one of a new born or adult heart.   Did you know that a fetus’s heart has an extra blood vessel that disappears within 48 hours after birth?  We also learned that the placenta provides the oxygen to the blood during pregnancy.  The more we learn the more we are amazed. Babies are serious miracles. There are a few other differences in the hearts that I won’t even attempt to explain.

Anyways, on to baby Elliot…

After all that we weren’t really given any new information on Elliot. They weren’t able to get the best pictures and didn’t see everything they wanted to see.  Surprise, surprise little Elliot didn’t want to cooperate so we are scheduled to go back in 4 weeks.  He did however tell us what they can see (which is most of everything) looks normal. He still can’t say if there is a whole in his heart and hasn’t been able to see the veins that connect and carry blood to the left lung.  He believes there is nothing adding to the complication of CDH. So, all in all no news is good news. At times all these appointments seem unnecessary and frustrating but we are thankful for the information we will have when our baby is born.

Jordan and I were also very impressed with the nurse who works at the cardiology office who is in charge of coordinating the doctors.  She was very helpful and sweet.  It is always such a great comfort when people truly seem to care about what you are going through and how you are feeling.  So far we have no complaints about the many doctors and nurses who are guiding us through this difficult process.

Our next appointment is on Monday at the OB’s office. We are really hoping Elliot has grown.

In hopes to make some extra cash for our future medical bills I will be making and selling earrings at my parents store Rod Works! If anyone has scraps of fabric they are willing to donate please let me know. I would really appreciate it!

Love,

Casey, Jordan and baby Elliot

Rollercoaster

(Originally posted on 11/27/12)

Growing up I found that rollercoasters weren’t really my thing.  Most of the time they made me sick but sometimes I would pass out on them too.  That was fun…

Well I can say now that I would rather go on 1,000 real rollercoasters a day than be on this emotional rollercoaster on which I now find myself.

I am not complaining, just stating the fact.  I strongly believe that God is watching out for Casey and I and that this is part of his plan for us.  I love my little Elliot and would not trade him for the world.

That being said let’s hop on the coaster and fill you all in on the ride we took the past week or so.

Last Monday we had our first growth ultrasound since the diagnosis.  (Every three to four weeks they do an ultrasound to see how Elliot is growing.)  Casey’s mom came with us and based on the report from the cardiologist we were all in a pretty good mood.

We had a new sonographer this time that was very nice.  Once again I am very grateful that the sonographers at our doctor’s office are allowed to talk to us about what they are or aren’t seeing.  It makes a nerve-racking experience a lot more bearable.

As with every other ultrasound we have had so far Elliot was not in an optimal position for seeing everything we needed to see.  This was the first time I remember that he was not breach, but he was balled up and his back was facing up.

As the ultrasound progressed things got a little quieter and the look of concentration grew on the sonographers face.  She informed us that, while she couldn’t get a great look due to his position, his chin seemed to be small.  She also found something relating to the umbilical cord that she told us she didn’t feel comfortable discussing.

She finished up and went to get the perinatal/ultrasound doctor.  The mood was slightly diminished but not terribly uncomfortable.  It took her a while to go over the pictures with the doctor but Doctor Wolfson was soon in our room.

He started out by basically doing a brand new ultrasound.  He quickly confirmed everything that the sonographer told us and then spent a lot of time looking at the umbilical cord with her.  As they did so they let us know that they were only seeing two vessels in the cord. (Most babies have three, two arteries and one vein.  Elliot has just one of each. )

The other thing they were concerned about was that the vein that goes through the liver was curling around it.  Neither the doctor nor sonographer was 100% sure what that meant.

After taking a deeper look at that the doctor went over everything that they had detected in the ultrasound, which I will break down in a numbered list.

  1. They were reasonably confident that the Elliot has a condition called micrognathia, which in relatable terms is a small chin.  This, in itself, is not normally a bad thing, but in this case he told us that it could be related to some sort of chromosomal abnormality that the Harmony test would not have picked up.
  2. Elliot is really, really small and not proportionally small either.  His head was two weeks behind, his arms and legs were three weeks behind and his torso was five weeks behind.  This also is a possible indicator of a chromosomal abnormality.
  3. Elliot’s umbilical cord is a two-vessel cord.  This is not entirely uncommon among babies.  In general, it usually results in smaller babies, which means it might be the cause of Elliot’s size.  At the same time though it also could hint at an underlying chromosomal issue. (Three for three for those of you keeping track.)
  4. The doctor also was concerned about the liver possibly being in the chest cavity.

Talk about a blow.

The doctor made sure we knew that Elliot was not in an optimal position to be 100% certain about the micrognathia.  He also wanted us to get a second opinion from another ultrasound doctor in the practice regarding the umbilical cord and liver.

I must digress for a moment to express my gratitude to our doctors for their sympathy, and candidness during this process.  Doctor Wolfson prefers to take an optimistic approach to these situations, which is so helpful.  He also stressed that it is still early and we don’t really know what course this is going to take so we should not put all our eggs in any specific emotional basket. (My words not his, but it is the message he conveyed to us.)

Back to the appointment…

We still had to meet with the nurse counselor (my title for her, not sure of her exact title).  She stressed the importance of optimism and positive thinking.  She encouraged us to be strong and to enjoy the upcoming holiday time with family and friends.  She was helpful and will be the one going through the birthing classes with us that will be tailored to Elliot’s specific situation.

We set up our second opinion for today and the appointment was finished.

We left and were pretty devastated.  I was tasked with writing the blog about the appointment but every time I tried I would break down.  Sleep has been a fickle friend.  Much like my youthful experiences with rollercoasters this latest ride made me sick.  While I didn’t pass out, I might as well have as I spent most of the next day in our dark living room on the couch.

We went to St. George, Utah for Thanksgiving and had a grand old time with family and friends.  Getting away and relaxing was exactly what we needed and we came back Sunday ready to get back to life.

Today’s appointment was much better than last Monday’s.  We visited the downtown office of our perinatal group’s practice for the first time.

The ultrasound cleared up some of the confusion from last week and left us with a much more positive outlook.

  1. Elliot was in a slightly better position to get a view of his chin and the doctor didn’t think that it looked like micrognathia.  Once again he wasn’t 100% sure, but he felt fairly confident.
  2. Elliot is still small but it appears he has grown since last week, which is a positive sign.
  3. The doctor confirmed that Elliot has a two-vessel cord and that the vein was curling around the liver indicates that liver is indeed in the chest cavity.  While this is not optimal he seemed to be confident that the surgery would still have a high chance of success.

The doctor does think that an underlying chromosomal abnormality is a possibility but doesn’t feel that we need to do an amniocentesis at this time.  The risk is great and knowing at this point would not change the care plan for the time being.  There is still a good chance that Elliot is just a small guy.

As with my previous experiences on rollercoasters this ride has not been an enjoyable one.  I am grateful that I have such a strong partner to sit by my side through it all and look forward to the end.

One of the many positives that had come out of the experience is that every one of these visits has increased my love for Elliot and Casey.  They are my whole world now and if I must be on an emotional rollercoaster I wouldn’t want to be on it with anyone else.

Comfort Care

(Originally posted on 12/22/12)

We write this post with the heaviest hearts imaginable.  The title of the post pretty much sums it up but I will start with out Tuesday appointment so you all have the whole story.

Tuesday we went in for a growth ultrasound to see how Elliot had progressed since our last visit.  Everything started out pretty normal.  Our sonographer was Sarah, who did the ultrasound when Elliot was diagnosed with CDH.  I think we have mentioned previously that we like that the practice that we are going to allows the sonographers to tell us what is going on and what they are seeing.  Sarah told us that Elliot hadn’t grown very much at all so we knew that once Doctor Wolfson came in the news wasn’t going to be good.

Dr. Wolfson came in and explained to us that Elliot hadn’t grown very much at all in the past four weeks.  He told us that if this were a normal pregnancy (one without CDH) they would go ahead and deliver him in the next couple of weeks.  Apparently, when babies have trouble growing inside the womb it is safe to deliver them tiny and help them begin to grow outside.

Elliot’s CDH prevents that from being an option.  He told us the he was going to bring us up again at the Thursday conference all the doctors from our practice have to discuss special cases.  All of the different types of doctors are present (i.e. neonatologists, perinatologists, OBGYNs, etc.) and they discuss the best course of action to take.

We left a little confused as to what this all meant for little Elliot, but we realized it wasn’t good.  We were scheduled to meet with a neonatologist Thursday at Good Samaritan at 1:30.

Thursday morning one of the nurses from the practice called and asked us if we would be willing to change that appointment to 2:00 so we could meet with both a neonatologist and a perinatologist at the same time.  We agreed and when we got there we actually had to wait for another hour due to an emergency that the perinatologist had to take care of.

When they sat us down we were given the bad news.  Barring a miracle Elliot’s best course of action will be comfort care.

Comfort care basically means that once he is born they will clean him up and then we will get to spend his short time on earth together as a family.  He won’t have to have any tubes inserted or procedures done.

The reason is simply that Elliot has failed to grow enough to be eligible for many of the necessary treatment options.  If the projection holds true on his weight at birth he will be a little over two pounds and in order to receive the vital treatment options he needs to be at least 5 pounds.

His size compounded with the severity of his CDH would mean that any lifesaving measures would only cause him unnecessary pain with no real chance at success.

The doctors made it clear that if he does begin to grow we will change the plan, but there is no evidence to suggest that he will be getting much bigger.

While we always knew this was a very possible outcome, to actually hear it was tougher than we imagined.  I will say this about the doctors that gave us the news:  They were wonderful.

They handled it with so much grace and professionalism.  It was obvious that giving this information to expecting parents was every bit as hard as one would expect.  As we left the perinatologist took Casey into her arms and they cried together.  She told her that she was hugging her from one mother to another.

We are still reeling a little bit.  One small silver lining is that we finally have an answer.  There are still a lot of unknowns, but now that we know the ultimate outcome there is a small sense of peace.

We would be remiss if we didn’t recognize the Christmas season at this time.  One of the great blessings that we have is a testimony of the divinity of Jesus Christ.  We know that he was born in Bethlehem and lived a perfect life, providing us with an example of righteousness and the opportunity to utilize his atoning sacrifice to one day return and live with Heavenly Father again.

As much as this news hurts, we are grateful that Elliot will be our son, now and forever, and even though we won’t be able to spend this life with him we know that in the life to come we will be reunited.

We can’t thank you all enough for the support and prayers we have received.  We truly feel them and hope that you will continue to send them our way as we see this process to its completion.

We love you all very much.

Love,

Jordan, Casey and Elliot

Q&A Time

(Originally posted on 1/30/13)

Q&A

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First here is a picture of Elliot.  If you rock and read the whole blog there will be another one at the bottom :)

It’s been way to long since an update!! There are a few questions we always get asked so I thought it would be a good idea to post them here.

Has Elliot grown?

We had our last ultrasound on Wednesday January 30th and Elliot had grown but is now measuring 8 weeks behind.  He is estimated to be about 2lbs 12oz.  At this point, according to babycenter.com, he should be around 5lbs.

What is the birth plan?

This is unfortunately up in the air.  Right now it is up to nature. They have talked about whether or not inducing me a week early would give us a higher chance of spending time with him alive so, that’s a possibility.  They will also induce me if I go two weeks over. The only thing we know for sure is I will not have a C-section. Because of Elliot’s size a C-section would have to be performed with a vertical incision. That would cause a lot more damage to me and also require me to always deliver via C-section.

Will this affect our future children?

From the beginning we have been told the chances of this happening again are around 2%. However because I never had an amniocenteses we don’t know if the underlying issue or cause of Elliot’s CDH is a chromosome abnormality.  We will have Elliot’s DNA tested after he is born. If it comes back positive Jordan and I can then decide if we want to test our DNA. Those tests will give us a more accurate answer to this question.

Did we get a second opinion?

The great thing about the practice we go to is how many doctors they employ. We have meet with two neonatologist, three high-risk OB’s, loads of nurses, a pediatric cardiologist, four ultrasound techs, and a few others. The crazy thing is we haven’t even met with half of the doctors in the practice. Every Thursday these doctors meet together and discuss their patients. We know that we have been mentioned several times and we know they all agreed comfort care is the best option for Elliot.  I don’t know how many doctors are at these meetings but since they serve the entire Phoenix area I imagine it’s a lot.

Also, the main reason comfort care is the best option is because of his weight. The machines they use to save these babies lives have a weight requirement of 5lbs. Even if we traveled to Philadelphia, San Francisco or half way around the world this requirement would be the same and so would Elliot’s size.

Jordan here: One person asked me why we didn’t go to another practice for a second opinion and the short answer is that we really feel comfortable with the set-up of this practice. There isn’t one doctor who has the final say, and we know that they disagree sometimes because we have seen it first hand. The beauty is that even though they sometimes disagree initially they have that Thursday meeting and some up with a solution.

They then let us know how the meeting went and even have explained some of the other doctor’s opinions on our treatment and why they came to the group’s decision.

How are we doing?

This depends on the day. We have good days and bad days. We feel blessed to have all this knowledge so we can prepare for the worst but at the same time how do you prepare for this? At times we can’t wait to get it over with and then we feel guilty for feeling that way.  We are anxious, scared, and heartbroken but we continue to count our many blessings.  We are so grateful for all the love and support we have received.  We cannot thank you enough.

With love,

Jordan, Casey and Elliot

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