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Hi all,

An other week has gone by and Lorena is 10 weeks old already. Still our struggles with her health are not over yet. As she is not willing to take the bottles that we try to feed her. Some she drinks part way and others she does not even want to touch. The same goes for trying to nurse her. Sometimes she wants to but other times she does not. We were at our wits end and so after consulting with the surgical doctor we decided to put the NG feeding tube back in on Thursday. Since then things have been better for all of us concerning the stress we were experiencing. Peace has returned to the home as she cries a lot less now. Now we give her about 45 minutes to drink her bottle and then what ever she does not take we put down the feeding tube into her stomach. Still with this there is a fine line to decide weather to give her the full 60 ml or less sometimes. When she gets to full she vomits it all back out.

We also bought 10 different packs of bottle nipples this week just to try to find one that works good for Lorena. We did find a nice slow flow nipple that seems to work better for her. We did not realize how weak she really was when she came home from the hospital as we used a medium flow nipple on her bottles meant for 3 to 6 months old babies (the same as they used in the hospital). We tried a slow flow then but she got tiered so quick as she did not have the strength to suck hard enough. But now that same medium flow nipple became to fast for her as she has so much strength now and she could not keep up with the flow. Still some slow flow we tried were to slow again and all the medium flow were to fast. We were glad to find one brand of slow flow nipples that is somewhere in between and she seems to be able to drink well with those. "Trouble shooting" as Lodewyk would call it in his line of work. We were glad to find the solution, a bottle nipple that works good for her.

Some people wonder why I don't try to nurse her instead of giving bottles. The problem is that because she is an O baby she can not take high volumes of milk like healthy babies. Therefore she must have fortified milk (breast milk with added formula to make a higher calorie milk) to be able to continue to grow. Believe me I wish I could just nurse her and I still hope that with time I may be able to start nursing her more & more. It is so much nicer for both mom & baby and it would make for a whole lot less work. I never realized with our other 2 children what a wonderful blessing it was to just be able to nurse them. We know from all we have read and heard that Omphalocele babies have troubles with feeding and so we will just continue to do the best we can for Lorena.

Many people have mentioned how much Lorena looks like Jeremy. We agree but she also looks a lot like Janita when she was a baby. All our babies look very much alike we think, as I remember thinking when Jeremy was born "this is Janita in a boy form". Just for the fun I will add some pictures of them as a baby and you can see for your self. One thing is for sure, Lorena was born with the most hair.

Today we had an appointment with the respiratory clinic. We were send home with an oxygen monitor to see if she can be taken off of the oxygen yet. So tonight she will sleep for 8 hours without the use of any oxygen while being monitored. In the morning we need to return the monitor and then they can see how she did. They are going to call us on Friday to let us know if Lorena can be taken off of the oxygen yet or if she needs to stay on for an other month. We are hoping she will not need it anymore. It would be so nice to be able to carry her through the house without being plugged in and always holding on to the hose incase it gets caught again as it often does.

Lorena also got her 3rd RSV shot to help prevent her from getting a cold or flue...hopefully. Janita came down with a cold & flue on Saturday so we had to keep her out of Lorena's range. It seems the kids keep bringing home colds and such from school. It makes things harder as we need to be so careful Lorena does not catch anything.

We also spoke to a dietician again and now it became a bit more clear what Lorena's troubles might be trying to bottle feed. Because of her condition she never learned to drink until she was over a week old. This makes it harder for them to learn to coordinate the sucking an swallowing together. So in other words she is having a hard time of it sometimes. This explains why she can be so hungry and yet not be able to feed well, she then gets frustrated and things go even worse. She drinks the best when she is not so hungry and eager to get her bottle and she is more relaxed to begin with. I guess we always think that drinking is a natural thing but it is something babies have to learn and because she missed learning to do this those crucial first days it is harder for her.

It is time to feed Lorena again so I must send this update out as soon as possible.

Greetings from Calgary!

Lodewyk, Rena, Janita, Jeremy & Lorena