Dear Family & Friends,

Monday Febuary 18, 2008

"In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will, in order that we, who were the first to hope in Christ, might be for the praise of his glory." --Ephesians 1:11-12

The days go by so quickly as our days are so full. It is hard to get much done in between the feedings, mixing the milk and pumping etc. Especially now that I am trying to pump every 2 hours during the day so that I can have enough breast milk for Lorena, hopefully. So it is 10:30 pm that I am starting on this update before having to feed Lorena at 11:00 pm again. The house is quiet, as all have gone to bed and Lorena is sleeping beside me in her swing. It seems we have found a bit of a routine and it is still working great for Lodewyk to sleep all evening while I hold down the fort and then he takes care of Lorena through the night. This way we both get about 5 to 6 hours of sleep. Lorena has settled into our home really comfortably. She is so much more relaxed then those hospital days.

We are glad that she is still taking all of her bottles and because she seems hungry at certain times of the day still we have been giving her a little extra as well here and there and she is taking it all. I am especially happy that I don't need to put in the NG tube anymore and hope it will stay this way. She seems to be growing now and well on her way to recovery and growth. We are so thankful for how well she is doing, still this mommy can't help being really worried from time to time. Questions arise in my mind like "have we really been through the worst or can there be more to come?". Reading on the internet about omphalocele cases makes me realize that so much more could have been wrong with her, still questions remain that I want to ask the doctor tomorrow when we go for 2 appointments (an Echo & with the surgeon) at the Children's Hospital. Questions like "is Lorena at risk of developing liver cancer around age 2 as is the case with some omphalocele babies". And "how much chance for the heart to heal on its own or do we need to be prepared that she will get a heart surgery in a few years time?". Yes, we do rejoice in every wonderful healing day with her and we should not worry about what lays ahead as the Lord has helped us so far every step of the way and we know she is in His hands. Still this mother heart hopes and prayes for the best for this little girl who has already been through so much. We will continue to rely on God's promises like in Rom. 8:28.

For those of you who are interested in some more info about omphalocele babies, this would be a good website to look up:

   www.minnesotaneonatalphysicians.org/OMPHALOCELE.pdf.pdf 

Or for more stories of Omphalocele babies: http://www.omphalocele.com/

The baby shower turned out to be very nice. My friend Jeanine did an excellent job of organizing it and I want to thank her for doing this. It was great fun. My sister Trudy spend much time gathering all kinds of things to decorate the house and had a hard time finding all the ducky themed items to decorate it all so nicely. Thank you Trudy for all you did to make it an extra special occasion. We had fun games and it was so nice to see some people we have not seen in a while. Thank you to the following people for coming to help us celebrate the birth and life of Lorena and for making this a wonderful time for us. You all spoiled Lorena with lots of wonderful gifts.

THANKS for coming to:

Marg Cartwright (lady from church who also organized & delivered all the food dishes other ladies from church made)

Kay Belisky (friend from church)

Sabrina Belisky (Kay's daughter)

Jocelyn Stobbart (Jeremy's Sunday school teacher) and her mom

Jessie Mercer (Janita's sunday school teacher)

Ingrid Lanting (our pastors wife)

Louise Piechotta (our neighbour lady)

Evelyn Lust (friend, I babysat her kids after school once a week)

Robin Lust (Evelyn's daughter)

Mrs. Anten (Janita's social teacher)

Ms Amer (Janita's Math teacher)

Marian van Berkel (Friend)

Christine (Marian's daughter & Janita's friend from school)

Jeanine Stone (friend who hosted the shower)

Katelyn Stone (Jeanine's daughter)

Sarah Stone (Jeanine's daughter)

Trudy Weeda (my sister who came all the way from Ontario to help us)

Ali Vroegindewei (Lodewyk's sister)

Mom Brobbel (Lodewyk's mother)

Gerda Brobbel (sister in-law)

Gerrelee Brobbel (Lodewyk's niece)

and Deborah Kalma who dropped off a gift and pie after the shower.

On Sunday we went for our first family outing with all 5 of us and took Lorena to church for the 1st time. We decided however that it would be better to keep her away from places with a lot of people as much as possible until the flue season is over as she can not afford to get a cold. However we wanted to go to church with her just this once as a way of saying thank you to all the people for their prayers and support. The following Sundays Lodewyk & I will take turns to go to church and to stay home with Lorena. 

Tuesday Feb. 19, 2008

Today we had our 2 appointments at the Alberta Children's hospital. Lorena did awesome and did not cry through any of it. We had our 1st appointment to do an echo of her heart. The radiaologist told us that the small hole has grown closed for which we are really thankful and only the larger of the 2 holes remains. This hole with a flap is classified as small and is 2.9 mm and so she has a fair chance of it growing closed as far as the radiologist knows but we need to discuss this further with the cardiologist (heart doctor) on our next appointment. It all seems possitive and we continue to pray that indeed she will not need a heart surgery.

In between appointments I was able to find a pumping station and have time to feed Lorena the bottle. The visit with Dr Eccles went well too. She was very pleased about Lorena's weight gain and at how well she is doing drinking her bottles. It is wonderful to see her continue to gain weight. Today Lorena weighed 3.525 kg (7 lbs 7 oz). She is really growing and she wants more milk now as she no longer seems satisfied with the 50 ml every 3 hours. So this morning around 5 AM she was crying even after Lodewyk fed her 65 ml so I decided to try to nurse her. She was not used to drinking from the breast but when I used a nipple shield she liked that rubbery feeling (like the bottle nipples) and drank from me for 15 minutes until she fell asleep satisfied. We mentioned this to the doctor and so she told me I can now nurse her as much as I want after/in between the 50 ml bottles. So this is a new step forward for Lorena and us as it is our goal to eventually only nurse her. This would make things easier too as it will be less work but for now the main priority is to make sure Lorena continues to gain weight. So we need to continue to feed fortified breastmilk for a time yet. Bottle feeding and pumping and the added nursing in between is going to make me more bussy for a time. However, I am so happy that she is starting to nurse now even if it is only little bits for now.

I asked the doctor about "O babies" who develop liver cancer and if Lorena was at risk but I was put at ease when the doctor told me this occurs in o babies with Beckwith-Wiedermann Syndrome and she told me that Lorena does not have this syndrome. This is a worry off of my mind. I also asked what other set backs may occur with O babies. This made us realize that follow up operations may need to be done. In about 10% of the O babies cases the muscle tissue starts to come/tear apart again in spots sort of like a postage stamp and then through these gaps the intestines may start to grow out again causing an other hernia/bulge on the belly. If this happens an other operation will need to be done. In some cases more then 2 of these operations are done. The doctor did say that this most often happens within the 1st year of life and that is why she will be continually monitored by this same doctor. So we hope and pray that this will not be the case for Lorena and that this one operation will keep all in place. The doctor was hopeful that Lorena would be part of the 90% that do not need an other operation but she could not be sure as only time can tell.

Still more appointments are on our calendar for Lorena, like the ultrasound of her tail bone but those are all in the coming weeks. This weeks appointments are done and we can start to focus on Jeremy's Birthday which is coming up on Friday Feb. 22nd. He has decided to have his party on a Saturday afternoon so I better start to make plans for what games etc. to do for the party. At our house it has become a tradition to decorate the house with very colorful Dutch streamers and balloons, and so on Thursday will be the decorating night so that the birthday boy can ooh and awe the nice decorations in the morning and feel extra special. It will be good for Jeremy to have his birthday as usual and get this extra attention as all eyes have been focused on his sister.

Some of you have let me know you could not make it to the shower but would like to come by for a visit some other time. We would love to have you but please do call ahead of time to decide on which time works the best.

Thanks

LRJJL

Lodewyk, Rena, Janita, Jeremy & Lorena