April 2013 – BabyElliot

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:

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.
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.
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 28^th. 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!

Ticker Talk

(Originally posted on 11/15/12)

On Wednesday November 14^th 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