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Dear Family & Friends,

April 1, 2008 (They call it April fools day but we have no time for joking around so I kept this update serious)

An other week has gone by and we are constantly trying to find some sort of routine that works for Lorena. Still for now this seems to be a difficult task. Now Lorena is refusing all her bottles and does not even want to begin to drink them. It seems to be yet an other step back in her feeding. To say it mildly this is very discouraging for us. Now we have been feeding her full bottles through the NG feeding tube. This takes over an hour per feed. She does however want to nurse from me most of her feeds. So now I try to nurse her every time but she only drinks from me for about 5 minutes and some times not at all. After each nursing we try to guess how much she got and still feed her about 50 to 60 ml through the NG tube. It is hard because if she gets too much she will vomit it all back out. We are sad that she has taken yet an other step backwards in feeding and we hope and pray that this will turn around again soon. It is a difficult task God has given us and we pray for strength to continue on and not get discouraged. Yet, we thank our Lord daily that he has blessed us with such a special little baby. When she gives us her wonderful smiles, the love for her and the thankfulness for having her overwhelm us.

Lorena's weight was not so good again last Tuesday as she only grew 5 grams a day and the goal is to have her grow 30 grams per day. Her weight was 4060 grams. The nurse told us to increase the milk but we tried and then she vomits out the whole bottle so we are trying to give her some extra with the nursing. Tomorrow the nurse will come again and we hope and pray that she will have grown more again as she needs to start growing more.

They phoned us on Friday from respiratory and told us we needed to keep the oxygen on an other month. When we asked why however, we found out it was all a matter of incomplete paperwork. The test from the monitor came out good and her lungs are okay to breath without the oxygen on her however the cardiologist has to see her again to decide if she can do without the oxygen for her heart now. This appointment was booked on April 30 so we decided it was ridiculous to keep her on oxygen for an other month simply because the appointment is so far away. So we pushed and pushed and finally got an other appointment for Thursday to get her heart checked. It was going to be the first week since she came home that we did not have to go for an appointment to the hospital but we much rather go in to try to get her off of the oxygen sooner. We should get the results by beginning of next week and then we will know if she can get off of the oxygen yet. So for now Lorena will remain plugged in and stuck to the oxygen hose.

We started to let Lorena sleep through the night and she is sleeping a 6 hour stretch now but this means we need to keep trying to feed her more during the day to try to make up for the one missed feed. It also makes it possible for Lodewyk to go to bed around 9 PM now after her 2nd last feed. I still stay up until after midnight to give her her last feed and then I put her down in the cradle in our room for the 6 hour sleep.

On Friday the Canadian Baby Photographer is coming into our home for a photo session. So we plan to take of the oxygen a few hours before and take out the feeding tube about an hour before (she is due for a new one that day) and hopefully her cheeks will not have that red spot from the duaderm stickers on her face. Lorena always cries terribly when we take the stickers off carefully as it still hurts her and also when we put the NG tube down. The last time we did this it was hard to comfort her so I decided to nurse her and that did the trick and she ended up nursing for 20 minutes that one time.

We also have figured out her different cries. She cries uncontrollably when something hurts like changing the oxygen and NG tube and then she has a hungry type cry but she also has this little cry that is almost like talking when she wants to be picked up. If we don't pick her up then it becomes a much louder cry. So we are able to keep her happy more now. This does mean a lot of holding. She still likes to sleep in our arms a lot. We don't mind as we love to hold her and we can take turns and often still do stuff on the computer while holding her.

One of the biggest worries which nags at me from time to time is if Lorena will need heart surgery when she is older. We have seen her suffer so much already and I get sad thinking about the possibility of an other operation. Please continue to hope and pray with us that the Lord will heal Lorena's heart and that no surgery is needed. We have already heard that all heart surgery for children is done in Edmonton which is a 3 hour drive north from Calgary. We would probably need to take a hotel up in Edmonton then. But I should not worry for the day of tomorrow as we know that the Lord will continue to care for us. For now we will take it one day at a time and count our many blessings also concerning Lorena's recovery.

In the last weeks we have been receiving some more tokens of love and caring again. This week I would like to thank those of you who gave gifts of money to help with medical expenses as well as the cute baby clothing, toys and things for Lorena and for the food and snacks brought to our house for us to enjoy. This is very much appreciated and touches our hearts. We also thank you for the many cards that were send/given to us. We are still enjoying them all, as they are hanging on the fireplace. I plan to put them into a book as a keepsake for Lorena. Thank you all for your continued prayers.

Love Lodewyk, Rena, Janita, Jeremy & Lorena

I did not take so many pictures this week so I have added some of the earlier pictures of Lorena to this update. Also I have put all the updates onto our website now. Please feel free to pass the website on to others. I hope to add the weekly updates as well.

http://www.telusplanet.net/public/lorejj20/index.htm


	Lorena still on oxygen
	April 1, 2008 Dear Family & Friends, April 1, 2008 (They call it April fools day but we have no time for joking around so I kept this update serious) An other week has gone by and we are constantly trying to find some sort of routine that works for Lorena. Still for now this seems to be a difficult task. Now Lorena is refusing all her bottles and does not even want to begin to drink them. It seems to be yet an other step back in her feeding. To say it mildly this is very discouraging for us. Now we have been feeding her full bottles through the NG feeding tube. This takes over an hour per feed. She does however want to nurse from me most of her feeds. So now I try to nurse her every time but she only drinks from me for about 5 minutes and some times not at all. After each nursing we try to guess how much she got and still feed her about 50 to 60 ml through the NG tube. It is hard because if she gets too much she will vomit it all back out. We are sad that she has taken yet an other step backwards in feeding and we hope and pray that this will turn around again soon. It is a difficult task God has given us and we pray for strength to continue on and not get discouraged. Yet, we thank our Lord daily that he has blessed us with such a special little baby. When she gives us her wonderful smiles, the love for her and the thankfulness for having her overwhelm us. Lorena's weight was not so good again last Tuesday as she only grew 5 grams a day and the goal is to have her grow 30 grams per day. Her weight was 4060 grams. The nurse told us to increase the milk but we tried and then she vomits out the whole bottle so we are trying to give her some extra with the nursing. Tomorrow the nurse will come again and we hope and pray that she will have grown more again as she needs to start growing more. They phoned us on Friday from respiratory and told us we needed to keep the oxygen on an other month. When we asked why however, we found out it was all a matter of incomplete paperwork. The test from the monitor came out good and her lungs are okay to breath without the oxygen on her however the cardiologist has to see her again to decide if she can do without the oxygen for her heart now. This appointment was booked on April 30 so we decided it was ridiculous to keep her on oxygen for an other month simply because the appointment is so far away. So we pushed and pushed and finally got an other appointment for Thursday to get her heart checked. It was going to be the first week since she came home that we did not have to go for an appointment to the hospital but we much rather go in to try to get her off of the oxygen sooner. We should get the results by beginning of next week and then we will know if she can get off of the oxygen yet. So for now Lorena will remain plugged in and stuck to the oxygen hose. We started to let Lorena sleep through the night and she is sleeping a 6 hour stretch now but this means we need to keep trying to feed her more during the day to try to make up for the one missed feed. It also makes it possible for Lodewyk to go to bed around 9 PM now after her 2nd last feed. I still stay up until after midnight to give her her last feed and then I put her down in the cradle in our room for the 6 hour sleep. On Friday the Canadian Baby Photographer is coming into our home for a photo session. So we plan to take of the oxygen a few hours before and take out the feeding tube about an hour before (she is due for a new one that day) and hopefully her cheeks will not have that red spot from the duaderm stickers on her face. Lorena always cries terribly when we take the stickers off carefully as it still hurts her and also when we put the NG tube down. The last time we did this it was hard to comfort her so I decided to nurse her and that did the trick and she ended up nursing for 20 minutes that one time. We also have figured out her different cries. She cries uncontrollably when something hurts like changing the oxygen and NG tube and then she has a hungry type cry but she also has this little cry that is almost like talking when she wants to be picked up. If we don't pick her up then it becomes a much louder cry. So we are able to keep her happy more now. This does mean a lot of holding. She still likes to sleep in our arms a lot. We don't mind as we love to hold her and we can take turns and often still do stuff on the computer while holding her. One of the biggest worries which nags at me from time to time is if Lorena will need heart surgery when she is older. We have seen her suffer so much already and I get sad thinking about the possibility of an other operation. Please continue to hope and pray with us that the Lord will heal Lorena's heart and that no surgery is needed. We have already heard that all heart surgery for children is done in Edmonton which is a 3 hour drive north from Calgary. We would probably need to take a hotel up in Edmonton then. But I should not worry for the day of tomorrow as we know that the Lord will continue to care for us. For now we will take it one day at a time and count our many blessings also concerning Lorena's recovery. In the last weeks we have been receiving some more tokens of love and caring again. This week I would like to thank those of you who gave gifts of money to help with medical expenses as well as the cute baby clothing, toys and things for Lorena and for the food and snacks brought to our house for us to enjoy. This is very much appreciated and touches our hearts. We also thank you for the many cards that were send/given to us. We are still enjoying them all, as they are hanging on the fireplace. I plan to put them into a book as a keepsake for Lorena. Thank you all for your continued prayers. Love Lodewyk, Rena, Janita, Jeremy & Lorena I did not take so many pictures this week so I have added some of the earlier pictures of Lorena to this update. Also I have put all the updates onto our website now. Please feel free to pass the website on to others. I hope to add the weekly updates as well. http://www.telusplanet.net/public/lorejj20/index.htm The very first picture taken of Lorena just 2 minutes after birth. Lorena getting weighed just after she was born. A few hours after birth in intensive care at the Peter Lougheed hospital. Lorena with an iv on her little head. First picture of Lorena & daddy in IC. Meeting up with Lorena again as she was transported to the Children's Hospital in a special vehicle with a nurse while we drove there in our own vehicle. Lorena being wheeled away to the operating room. After the operation just 25 hours after birth in IC at the children's hospital. At Doctor Eccles office I was amazed at how thick Lorena's file is. All this paperwork for just one little baby. Lorena feeding through the feeding tube this week. She gives us many of these cute smiles. Just blowing bubbles. After nursing and trying to burp her. Yip, I can sleep in almost any position. Sleeping away while being tube fed. Thank you for the many cards we got for Lorena.