Jan 27, 2010 - 32 wks 5 days - Heart ECHO & Transitioning Care to Emanuel

Jan 27, 2010 - 32 wks 5 days - Heart ECHO & Transitioning Care to Emanuel

 

Mom got an urgent ECHO done due to threatened preterm labor to make sure the aorta was still stable. Thank goodness it had held rock solid all through the pregnancy at 3.8 cm which meant she could still try a natural delivery. A progression to 4.0 cm would have required a C Section. Also started transitioning care to Emanuel.

Jan 26, 2010 - 32 wks 5 days - Home From Hospital!

(Posting from CaringBridge Page)

After some significant effacement they managed to get labor to stop with the hopes of buying just a few more weeks. They had already said that ECMO would not have been available before 34 weeks if he came early.

~~~~~~~~~~~~~~~~~~~~~~~

(Posting on Grandma's FB page)

Alicia has come home from the hospital & will have a visit with her high risk OB Dr tomorrow. We will get a better idea of how much longer she can expect to hold off labor. 

Please pray that we can at least get 9 more days so the baby will have the ECMO option available if he needs it.

Jan 25, 2010 - Step Down From High Monitoring...

Jan 25, 2010 - Step Down From High Monitoring...

(Posting on Grandma's FB page)

Alicia moved from the high monitoring area this today to the regular maternity floor. Her Gitelman's syndrome may be part of the problem as her magnesium & sodium levels were below normal & potassium was at the bottom end of normal.

She may go home tomorrow, depending on how her levels look & of course what the contractions do. She has hit station zero & is engaged so we likely will hold it off for only so long....

{Addendum: The Gitelman's diagnosis was reversed months later as she tested negative, but she still has some unnamed variation of Gitelman's with the same issues.}

Jan 24, 2010 - Update on Pre-Term Labor

January 24, 2010 - (Posting from Mom's FB Page)

Back in the hospital from pre-term labor. They stopped it once but it started again today, so they had to give more stopping meds. It seems 2 be working for now.Please pray for us that it stops and I go home. Will post more as I get it.

~~~~~~~~~~~~~~~~~~~~~

Jan 24, 2010 - Labor Has Stopped...

(Posting on Grandma's FB page)

Alicia has had a few breakthrough contractions but for now the labor seems have to stopped. Because they had to give steroids to accelerate the lung growth they still have to keep her until mid-day tomorrow anyway but hopeful that will be all.

Jan 23, 2010 - 32 Wks 2 days - Preterm Labor!

(Posting on Grandma's FB page)

It's Sat evening & I writing this from OHSU Hospital as Alicia is in threatened pre-term (premature) labor. 

 

Mom was contracting every 6-7 minutes at 2 cm dilated 60% effacement and 0 station. They gave her medication to stop the labor & steroids to help advance Jayden's lung maturity in case he did come early.

 

Please pray they can get the contractions to stop as 32 weeks is too early as a whole & ECMO will not be available if a ventilator is not enough.
 

Jan 20, 2010 - 31 Wks 6 Days - Hyperoxygenation Test

Jan 20, 2010 - 31 Wks 6 Day

Critical Ultrasound - Hyperoxygenation Test to Assess Right Lung Function

Fetal Weight Estimate: 1828 gm, 4 lbs, 0 oz. Wt is 52% for 31.9 wks.

Through all the prior ultrasounds the doctors had been very worried about Jayden's lung function as they had not seen clear indication of blood flow pattern in the right pulmonary artery. We had been told that if he was going to have a chance to survive, he would have to have good results off this test.

Results: 

Left CDH with cardiac displacement towards the right chest wall, no significant liver herniation.

LHR is 1.1. 

Kidneys appear echogenic.

Positive hyperoxygenation test with diastolic blood flow pattern in the right pulmonary artery!

Jan 12, 2010 - Getting Everything Ready...

(Posting on Grandma's FB page)

The last specialists are scheduled for Alicia & Jayden's delivery. The next few weeks will be a whirlwind of appointments in preparation for this very special delivery. All in all she is doing her best to push through it. We’ll get a very important update next week on how well Jayden’s lung is developing. Please keep them both in your prayers.

Jan 1, 2010 - The Start of a New Year...At HOME!

(Posting on Grandma's FB page)

Alicia just got home on Thurs after 5 days in the hospital. Jayden did just fine all week & an ultrasound yesterday showed some additional lung growth (yea!). Mom will be on blood thinner shots twice a day until after delivery & new blood pressure medicine to keep her condition from worsening. Please keep both her & Jayden in your prayers!

Dec 31, 2009 - Ultrasound, Diabetes Test, then HOME!!!

Dec 31, 2009 - 29 weeks - Ultrasound, Diabetes Test, then HOME!!!

(From Jayden's CaringBridge Page)

Mom remained stable so she finished up her tests & headed out to spend a quiet New Years Eve at home.

Before she headed out she found out she had failed her 1 hour Glucose test (199), adding the diagnosis of Gestational Diabetes. She will have to finger stick 4 times a day & manage her sugar levels with diet control.

~~~~~~~~~~~~~~~~~~~~

29 Week Ultrasound Summary

Fetal Weight Estimate: 1,284 gm, 2 lbs, 13 oz Wt 47% for 29.0 wks.

Previously diagnosed CDH and echogenic kidneys. 

The LHR/HC is 1.8. 

Normal interval fetal growth. 

The amniotic fluid volume is within normal limits.

Dec 29, 2009 - Another Scare

Dec 29, 2009 - 28 Weeks 5 Days - Another Scare

(From Jayden's CaringBridge Page)

Mom & Jayden had another scare as she started having chest pain & shortness of breath suggesting another blood clot. She was moved from maternity to Advanced Care (1 step below ICU). Tests showed the blood clot was unchanged.

Mom was also showing signs of high blood sugar (261) and was about due for a glucose tolerance test, so they decided to schedule it while she was there...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dec 30, 2009 - Another Scare...

(Posting on Grandma's FB page)

Alicia was doing better until yesterday when she started having pain & a fast pulse again. After a repeat CT cleared her from another clot they took her up to ICU as a precaution.

As I was trying to race back to the hospital we got hit with freak snowstorm & it took 4-1/2 hrs to get the 18 miles in to Portland. Grrrrrr!

Please continue to keep her in your prayers.

Dec 27, 2009 - Pulmonary Embolism

(Posting on Grandma's FB page)

I am asking everyone to keep Alicia & Jayden in their prayers. Alicia's currently in the hospital with a pulmonary embolism (blood clot in the lungs).

It was small & not a total blockage so they should be able resolve it but with all the challenges she has had through this pregnancy & with the baby's upcoming CDH it was something she didn't need now. 

 

Jayden is doing ok, he just needs to stay put for another 8-12 wks.

Dec 26, 2009 - Blood Clot Into the Lung...

Dec 26, 2009 - 28 Wks 3 days - Mom Throws a Blood Clot Into the Lung...

(From Jayden's CaringBridge Page)

The day after Christmas fear struck as Mom threw a non-occlusive left upper lobe proximal pulmonary embolus (blood clot) into her lung.

Thank goodness it wasn't a total blockage but it was enough to put her on blood thinner shots (Lovanox) 2 times a day in the belly for the rest of the pregnancy.

Although Mom was extremely uncomfortable, luckily Jayden didn't seem to care, and was not affected at all.

Dec 24, 2009 - Christmas Eve 2009

Dec 24, 2009 - 28 Weeks 1 Day

Celebrating the holidays!
Alicia & Jayden & Grandma Shelly

Dec 18, 2009 - We found CHERUBS!

Doing research on CDH was scary, but thank goodness we found our new CDH family through CHERUBS!!!

 

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....