Dear Family & Friends,

 

 I will praise thee; for I am fearfully and wonderfully made. Psalm 139:14a

 

"O" babies is what Omphalocele babies like Lorena are called. I finally had a chance to do some more reading on the internet about omphalocele babies or O babies. Most of the information we already know as we experienced it first hand. It did however make me realize again how much the Lord has been answering prayers through this journey of healing for Lorena. When the liver is in the omphalocele as was the case with Lorena it is called a giant omphalocele and these happen to 1 in 10,000 babies. Most often the omphalocele is only covered with a membrane from the start of the body which makes it difficult for the surgeon to close the wound as there is not enough skin. With Lorena it was a blessing that the skin had grown part way up the omphalocele as there was more then enough skin to close her up nicely. Still an other answer to prayer was that she had enough muscle tissue to close the wound without putting a synthetic plate in to hold it all in. This meant much less risk of infection and no 2nd surgery. An other big answer to prayers was that there was enough room to put everything back into her body in just one operation. As I have been reading most other omphalacele babies go through several operations/stages before the final operation to be able to fit it all back in. I some cases they even have to open the baby back up when it causes difficulty breathing because of a lack of space/tightness.

 

Then there is the feeding issue. We know Lorena is being carried in prayer and that the Lord has been merciful and caring for her. As after reading and hearing in the hospital about other O babies we realize how well Lorena is doing so far. Many of these babies struggle to keep the milk down and to gain weight, some are on feeding tubes for close to a year. So each day we are thanking the Lord for the wonderful progress Lorena has been making.

 

This week Lorena pulled off her NG tube and oxygen for the 2nd time and so we needed to change it and put a new NG tube in. However we decided on our own that since she is drinking so well to not put the NG tube back in until we really need to use it. So on Tuesday we took it out and she has drank all of her bottles empty since, so we have not yet needed to put it back in. We are not sure however if the milk portions get bigger over time if we will need it again, but we hope not. She also does not spit up much anymore, just a few times in the last week. This too is amazing for an O baby. We are so thankful for this wonderful progress.

 

I also read that fetal omphalocele may occur in conjunction with other conditions, including cardiac or genitourinary abnormalities, neural tube defects or twisted intestines, as well as the genetic defects trisomy 13 or 18. In addition, omphalocele may also be associated with Beckwith-Wiedermann Syndrome or Pentalogy of Cantrell. The possibilities of more defects for O babies is a large list of things and so again we are thankful that things are not worse with Lorena. Not all O babies survive after birth.

 

About 30% of O babies have some problems with the heart as is the case with Lorena. When Lorena was rushed into emergence the 2nd time as she almost stopped breathing and her lung collapsed, one bit of good news was told us. As they were checking her heart the cardiologist told us that the larger hole in her heart (she has 2 holes in her heart) actually has a bit of a flap on it. This was good news because the cardiologist told us that there may be a possibility that it could grow closed and then she would not need a heart surgery between age 2 and 4 years.

 

We ask you to please pray with us that the Lord will heal Lorena's heart and let the holes grow closed so that she will not need this heart surgery.

 

I also noticed that all the cases of O babies I read about this condition was known to the parents before the birth. It seems that an omphalocele almost never gets missed with the ultrasounds. Still we are thankful that we did not know before hand and I was able to have a normal delivery without having to go through having a cesarean. However we are thankful that the natural birth went well and no further complications arose for Lorena because of this more risky way to deliver an O baby.

 

We are also thankful that Lorena's foot seems to be heeling really nice. Yesterday the scab came off and now her foot is looking so much better again. There is still a little scab on the deep core part but the rest is healing really nicely as we continue to dress her wound twice a day.

 

Today on Thursday Feb 14th the homecare worker came again and with it she brought us a nice Valentine's gift. That is that after having weighed Lorena and comparing her with last weeks weight we were thrilled to learn that she has gained an average of 25 grams per day. The homecare nurse was very pleased with this result as she explained to us that with healthy babies they like to see an average weight gain of 30 to 40 grams per day but for an O baby Lorena is doing really well. Today she weighs 3.37kg.  

 

I decided to include a few earlier pictures with this update which we have not yet sent out before. These were the tense hours of not knowing exactly what was all wrong with Lorena and "would she live?" was our worry and fear. Still we reflect on those days each day yet and continue to be thankful for this little miracle.

 

We are enjoying the company and wonderful help of my sister Trudy but she and my friend Jeanine (who is hosting the baby shower) have all these secrets. They are making me so curious with all those secret phone calls etc. I know it will be a wonderfully fun baby shower as my friend, a former teacher, is the best at organizing such events. I guess I just need to wait patiently until Saturday. As Janita always says to me "patience is a virtue". 

 

We thank you all for your continued prayers especially regarding Lorena's heart.

 

Love Lodewyk, Rena, Janita, Jeremy and Lorena