Wednesday, September 26, 2012

Matildas hjärtfel - en förklaring på svenska

Översättningen till svenska på google translate är som vanligt lite konstig, så här kommer en enkel förklaring 
på svenska: Matilda har ett hjärtfel som kallas pulmonalisatresi, vilket betyder att hjärtklaffen mellan höger 

kammare och lungartären saknas och det är ett totalstopp där. Det här innebär att blodet som kommer från

 kroppen in i höger förmak och vidare till höger kammare inte har någonstans att gå, så det åker bakåt 

istället. Det är orsaken till att hennes höger förmak har blivit så förstorat. Hennes hjärta upptar redan över 50

 % av hennes bröstkorg (normalt för ett foster är 30%). Endast 30 % av barn med det här felet överlever tills

 de är fullgångna, så prognosen är inte så god. Matildas hjärta slår än så länge bra, men det är stor 

sannolikhet att det så småningom börjar svikta och att hon dör i livmodern. Just nu finns det inget som 

läkarna kan göra för Matilda. Hon är för liten för att överleva utanför livmodern. Om hon överlever till v. 28 

finns det möjlighet att hon skulle kunna klara sig och då måste vi också ta svåra beslut om vad vi vill att de 

ska göra.

Matilda Grace Odom

Dear Family and Friends,

Many of you know that Kristina is pregnant with our second child, Matilda Grace Odom. The past month or so has been a whirlwind of information and sad news. Kristina's OB/GYN referred us to a specialist in Fort Worth after seeing what she considered markers for Down Syndrome. This specialist informed us of a much more serious issue in the form of a heart condition. Again, we were referred to another specialist, this time a pediatric cardiologist. We had our first appointment with the pediatric cardiologist (Dr. Lisa Roten) yesterday and received some sad, though not unexpected, news. Matilda has a rare heart condition called Pulmonary Atresia. In her case the problem is that the Pulmonary Valve has not developed, preventing blood flowing into the right side of the heart to continue on the normal path to the lungs. Consequently, the blood has nowhere to go, so it flows backwards. This is what caused the right atrium to become enlarged. Normal fetal hearts take up about 30% of the chest cavity; Matilda's heart is at about 50% right now.

Though her heart is beating well right now considering all that is going on, there is a 70% mortality rate in patients with this condition. Since Kristina is only 18 weeks into the pregnancy, there is nothing that the doctors are able to do, other than normal checkups. We have another appointment with Dr. Roten (the pediatric cardiologist) on Nov. 20. If Matilda makes it to this appointment (~30% likelihood), we will have some difficult and complicated decisions to make depending on how the heart has developed between now and then.

Below is a great, easy-to-understand page on PA:


Please continue to pray for our family. We thank God for the health he continues to grant Matilda and pray that He would now heal this particular ailment. It is difficult to say, but true that God loves Matilda more than Kristina and I ever could. It is also true that God loves us more than we love ourselves. In all of this, we know that our dear Father in heaven loves and cares for us because He has shown us this in the cross of His Son, Jesus Christ. This is where we look for true comfort. "What then shall we say to these things? If God is for us, who can be against us? He who did not spare His own Son but gave Him up for us all, how will He not also with Him graciously give us all things?" (Rom. 8:31-32)

Lord, have mercy! Come quickly! Amen.

Love,

Weslie, Kristina, Edith, and Matilda

Sunday, September 23, 2012

10 months!!!

Our little Edith is 10 months old today. She's not really that little anymore. She's accomplished many amazing things such as mimicking with amazing precision, NEARLY walking, crawling very quickly, being cute, oh, and getting under the table to the cables for the router:


No offense meant to other parents, but Edith is the cutest baby in the history of mankind. Evidence follows:







Saturday, September 1, 2012