Nov 22, 2009 - Mid-November Update

(From Grandma's Facebook Page)

Alicia is hanging in there. Her morning sickness has eased a little. We are going to the hospital this week where she will deliver to meet the staff & hopefully get a tour of the NICU where the baby will go when he is born to stabilize before he has surgery.

Alicia's heart consult went well with no change in her heart since the beginning of the pregnancy so that’s good.

Nov 9, 2009 - Confirmation of the CDH...

     21 week Ultrasound - Confirmation of the CDH...

From the doctor's summary:

Estimated fetal weight of 857gm...

Diaphragmatic hernia with the fetal stomach in the left thorax and subsequent rightward displacement of heart to right chest wall. 

Fetal cardiac evaluation revealed anatomically normal appearing heart, holosystolic TR, abnormal right pulmonary artery blood flow pattern. 

There is reversed diastolic flow through the right pulmonary artery, which is concerning for pulmonary under-development. 

No evidence of liver within the thorax.

Normal four chamber view of heart. 

Multiple cysts measuring up to 3mm within the kidneys. 

The kidneys themselves are increased in echogenicity. 

Possible rocker bottom feet.

Oct 17, 2009 - Request for Prayers...

(From Grandma's Facebook Page)

Please keep our family in your prayers as it has been a tough week. 

 

Alicia found out Wed her baby boy due in March has a medical condition that will require a surgical correction shortly after birth and today we got phone calls letting us know that Alicia's grandma on her late father's side passed away on Thursday of complications of asthma, emphysema, heart disease & diabetes.

Oct 14, 2009 - Jayden's CDH Awareness Day

Oct 14, 2009 - 17 weeks - Jayden's CDH Awareness Day

Everything turned upside down as a new ultrasound suggested Jayden had a Congenital Diaphragmatic Hernia (CDH), a congenital birth defect of the diaphragm. 

Survival rates average about 50%. It was at that point we found out that his defect looked bad enough that they thought he might need a type of heart-lung bypass machine called extracorporeal membrane oxygenation (ECMO) & that our regular facility did not have it available so she would have to deliver at a neighboring facility. 

The good news was that his heart was structurally sound although squished a bit & the liver was not in the chest. Either or both of those problems would have reduced his survival chances further. We started learning about it & were scared to death for what it might mean for Jayden...

From the doctor's summary: Fetal Weight Estimate: 216 gm.

Diaphragmatic hernia: The heart is deviated to the right & the fetal stomach is within the left chest. In addition, a small amount of small bowel is also seen in the chest. No definitive liver involvement.

Possible renal cystic dysplasia. Several small cysts were seen within the renal parenchyma. Normal bladder and amniotic fluid noted.

Sept 1, 2009 - Nuchal Translucency Screening

(From Jayden's CaringBridge Page)

Sept 1, 2009 - 11 Weeks - Nuchal Translucency Screening

In September at 11 weeks Alicia had a routine ultrasound with a nuchal translucency screening that showed suspicious findings suggesting abnormalities.

A chorionic villus sampling (CVS) test showing no devastating abnormalities. It also told us she was carrying a baby boy!

Aug 5, 2009 - 7 Wks - First Scare & First Ultrasound

At 7 weeks, mom had signs of a threatened miscarriage. Luckily it was just a scare. Since her potassium was low, it may have been a reaction to that.

We did manage to get Jayden's first picture!

In looking back we wonder... was this our first glance at the CDH? Detecting CDH before the 2nd semester is practically unheard of. When the first ultrasound tech was looking at the scan, he stated he thought he saw a problem, only to have a more senior tech come in and dismiss it saying it was too early to see a problem with the fetus.

There is a large open spot right in the middle, and in what seems to be mid-torso what might be a somewhat hollow spot as well... what did this mean? Did it mean anything? Questions with no answers....

July 31, 2009 - First Visit to High Risk OB

At first it looked like mom was going to have a routine pregnancy but that all changed as Mom Alicia's headaches started getting out of control & she went into severe morning sickness causing her loose weight & make eating a literal chore (it kept up almost the entire pregnancy). 

In addition, the doctors realized she had a slightly enlarged aorta and weren't sure how it & a connective tissue disorder (now known to be Marfan syndrome) that causes joint & back problems would affect the pregnancy. That would mean extra monitoring. 

She was referred to the high risk OB clinic but little did we know that was only the tip of the iceberg...

June 21, 2009 - Jayden Was Conceived

Baby Jayden's story began when mom Alicia found out she was pregnant in July of 2009.

Jayden's mom & dad had been dating off & on for several years but split up just before mom found out she was expecting. They were not able to resolve their issues & dad went a new direction with his life.