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Dear Family and Friends,

Three weeks have passed since my last update. It was nice to have a 3 week period with no appointments at the hospital. The homecare nurse, Lucy also did not come for 3 weeks.

I think because things slowed down everything finally caught up with me. I felt like I was at my wits end with all the emotions bottled up. I did after all need to continue to be strong for Lorena and the rest of the family. There was so much to do and so many people involved with all the things we went through with Lorena, so many appointments to keep. Finally I was able to let it all out and I cried so long and hard like I have never done in my life before. I cried for our baby for what she all had to endure, the pain we seen her go through, the fear of almost loosing her and having seen her quit breathing on her own (this can not be expressed in words), for not having been able to hold her for the 1st 3 days of her life, for not having been able to recover myself at all after giving birth, for the difficulties with her heart, for having wanted to nurse her so much but she doesn't and the continual struggle with feeding her. Finally almost 4 months later I was able to let it all out. I am sure this will not be the last of it all but this sure has relieved me so much.

I suppose it also did not help that Lodewyk had broken his toe that week and he was not able to bring the kids to school for a bit and do anything much to help but needed extra care himself as he rested his foot. Some good advice to you, never kick the fridge, it will not move! Janita was goofing around with her daddy and showing him how high she could kick then when Lodewyk was going to do the same thing well that fridge got in the way and he was in a lot of pain. Lorena's care continues to be much work and I am glad we can continue to do this together as doing this alone is not possible yet at this point. The days I had to bring the kids to school Lorena got fed to late and everything was thrown off schedule including the pumping which I continue to try to do every 3 hours for Lorena.

Lorena is 19 weeks old already and still the feeding difficulties remain. Feedings go with ups and downs but mostly we can not succeed in getting her to drink her bottles. We get many suggestions from other people who can not understand why she should have a problem drinking. Suggestions like why don't you let her get good and hungry and then surely she will drink her bottle empty or why not feed her on demand. Believe me if only it was that simple I would resort to this right away but the thing is that even when she is hungry she will not finish her bottle and then there is still the concern to keep her growing. Lorena does not take a lot of milk yet. In the last 3 weeks we were able to work up the amount she gets from 60 ml to 70 ml without her throwing it all up again. Any time we give her more then she can tolerate she vomits out the whole bottle. Still being at 70 ml is a lot less then most healthy babies who get around 150 ml at this age. We have still been feeding her every 3 hours because she could only tolerate this low volume. Most babies get fed every 4 hours at this stage. We even got such suggestions as can't you get a wet nurse to come to nurse her for you. All these suggestions are well intended but to us it show how little people understand about these feeding difficulties we struggle with and how difficult this is for us. I have enough breast milk for Lorena (as I am still pumping) and it is not a matter of me not knowing how to feed my child, I did after all do this with our other 2 children too. It is not a matter of me not knowing how to be able to bottle feed either. This feeding difficulty is because of Lorena's condition, so we can not blame her either. We continue to work together with the experts on feeding, the occupational therapist and the dietician, to find a solution, hopefully.

We visited Dr. Eccles on Tuesday May 20th and her operated tummy is holding up well and so far the hernia is not coming back out again. The 1st year there is a risk that were she has been operated can start to tear and then the intestines can start to press out again and she would need an other operations. We are so thankful that so far this is not the case with Lorena.

When we talked to Dr. Eccles we did hear some other discouraging possibilities again however. We discussed the feeding troubles issue with her and asked why is it that she will not feed properly, why do omphalocele babies do this? The doctor's. answer was that they have not found a logic explanation but all they know is that most omphalocele babies have feeding problems. When we asked how long Lorena could still be needing to be tube fed we were shocked to learn that a lot of O babies have a feeding tube for over 3 years. Even more shocking was to find out that if the feeding tube will be needed and no end is in sight for weening her off that they may put in a G tube (Gastrostomy Tube). The doctor told us that this G tube would be surgicaly placed into the stomac through the skin but it would be a most difficult operation for Lorena because of how everything is currently in her body. Hearing this makes us all the more determined to try to get her to feed like normal healthy babies. Dr. Eccles was well pleased with Lorena besides the feeding issue. The results of the x-ray for her lungs also came back and everything looked great, there is very little if any scar tissue on her lungs. Dr. Eccles was also pleased with the way her diaphram (she had fixed) and everything else in her chest looked on those x-rays. We are thankful for all of this. Our next appointment with Dr. Eccles is in 3 months.

On Wednesday May 21st we spent all afternoon at the respiratory clinic again. Lorena got her last RSV shot as the cold season was not over yet. We also talked with the nurses and doctor about her and the respiratory Dr. was also pleased with how well she is doing and we no longer need to see this doctor anymore as all her breathing issues are resolved. However we spend most of the time with the occupational therapist and the dietician and we discussed all the possibilities in how we can help Lorena with her feeding problems. The occupational therapist and the dietician are going to be the only ones still working with us from the respiratory clinic as Lorena still has this feeding problem left that needs to be overcome if possible. In talking and trying to figure out what may be preventing Lorena from feeding better the occupational therapist was wondering if anything is irritating her esophagus, we in turn wondered if the NG tube may damage it as we pull out the old tube each week. As when we pull it out the tip is always so hard from the stomach acids and sometimes this tip has hardened in a bent shape to almost create a hard hook. You can well imagine that this would scrape all the way up as we pull it out. So with them we have decided to call the home nutrition people (where we order all the medical supplies all the time) and ask them for an other kind of feeding tube which is softer and can also stay in for 1 month at a time instead of 1 week at a time. However because of its softness this tube is much harder to get down/place. There is a trick and that is to freeze it but even then you need to put it in really fast to get it down before it melts and softens to much. Lorena is also due to get a little larger feeding tube now that she is 4 months old.

An other change the dietician thought was worth trying is to start feeding Lorena every 4 hours so that hopefully Lorena will feel more hungry and feed better this does mean that we have to slowly up the amount she gets over the next week from 70 ml to 80 ml per feed. This is a welcome change for us as you can well imagine the extra hour breaks in between feeds will make things a little easier for us. We were also encouraged to start introducing a little rice cereal, just a spoonful and only putting it on her lips with no spoon into her mouth as this again may cause her to reject it, so we want to take it ever so slowly in the hope that she will not also reject these more solid foods as well as the bottle. We have also agreed with the occupational therapist to put some of Lorena's feeds on video and bring in a DVD for her to see. This way she can see how Lorena does during feeds and have ideas on how we can help Lorena to feed better.

So to sum it all up Lorena is doing very well, she has come such a long way. It is not for nothing that a lot of people who know her story call her a miracle baby however the feeding struggles remain and believe me this causes a certain amount of stress not to mention the emotions that go paired with this. We are hoping that Lorena will do well on the solids so that she will not need a feeding tube for years to come. We hope you will pray with us that Lorena will learn to feed well and that she can get rid of the ng tube soon and that no G-tube operation will be neccesary in the future.

As she is getting older and has overcome so much we are glad that there will be less and less appointments to keep. With each one spread out farther apart. And our schedule is looking better with only the following appointments set up so far:

June 4 - Respiratory Clinic/Dietician about eating problems

with more following appointments until her feeding problems are resolved

June 17 - Genetics - follow up appointment to discusse blood tests results

July 18 - 3rd immunization

mid August - Dr. Eccles for checking omphalocele scar

end of Oct. - Cardialogy for her heart

Today, Thursday May 22, Lucy the home care nurse came again. She weighed Lorena and was very pleased about her weight gain. Lorena weighs 5080 grams now and gained an average of 21 grams a day over the past 3 weeks. We have noticed that Lorena is tolerating the milk better with very few spit ups now and we are also able to ng feed her faster now. Today Lucy discharged Lorena and there will be no more visits from the health care nurse. Really the only once following Lorena's progress on short term bases will be the occupational therapist and the dietician. With the surgeon, Dr. Eccles checking her every 3 months and the Cardialogist checking her every 6 months.

Have you ever wonder what caused Lorena's omphalocele?

Well, as a fetus is growing in the mother's uterus before birth, different organ systems are developing and maturing. Between the 6th and the 10th weeks of pregnancy, the intestines actually project into the umbilical cord as they are growing. By the 11th week of development, the intestines should return to the abdomen. When the fetus is growing and developing during pregnancy, there is a small opening in the abdominal muscles that the umbilical cord can pass through, connecting the mother to the fetus. As the fetus matures, the abdominal muscles should meet in the middle and grow together, closing off this opening. An omphalocele occurs when the abdominal organs do not return to the abdominal cavity as they should. As was the case with Lorena.

It is not known what causes omphalocele. Steps that normally happen in the development of the abdominal organs and muscles simply did not happen properly. It is not known to be caused by anything the mother did during pregnancy.

Because some family members have let us know that they have no interest in Lorena or her difficulties we have decided that it is time to stop sending out the updates to everyone via email. For those of you who would like to continue to follow her story I will post a new update on our website every month. So you can bookmark our website and look it up if you would like to do this.

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

For those of you who would really like to receive the updates via email (either for the 1st time or to continue to receive them via email) rather then to look them up on our website, I ask you to send me an email to let me know as I will then add your email address to the new list I am making. This list will only contain the email address of the people who will let me know they want to receive these updates via email.

We want to thank you for your continued prayers for the healing of Lorena's heart as well as for the feeding issues.

Greetings from a soggy wet Calgary,

Lodewyk, Rena, Janita, Jeremy & Lorena


	Lorena's Continued Feeding Difficulties
	May 22, 2008 Dear Family and Friends, Three weeks have passed since my last update. It was nice to have a 3 week period with no appointments at the hospital. The homecare nurse, Lucy also did not come for 3 weeks. I think because things slowed down everything finally caught up with me. I felt like I was at my wits end with all the emotions bottled up. I did after all need to continue to be strong for Lorena and the rest of the family. There was so much to do and so many people involved with all the things we went through with Lorena, so many appointments to keep. Finally I was able to let it all out and I cried so long and hard like I have never done in my life before. I cried for our baby for what she all had to endure, the pain we seen her go through, the fear of almost loosing her and having seen her quit breathing on her own (this can not be expressed in words), for not having been able to hold her for the 1st 3 days of her life, for not having been able to recover myself at all after giving birth, for the difficulties with her heart, for having wanted to nurse her so much but she doesn't and the continual struggle with feeding her. Finally almost 4 months later I was able to let it all out. I am sure this will not be the last of it all but this sure has relieved me so much. I suppose it also did not help that Lodewyk had broken his toe that week and he was not able to bring the kids to school for a bit and do anything much to help but needed extra care himself as he rested his foot. Some good advice to you, never kick the fridge, it will not move! Janita was goofing around with her daddy and showing him how high she could kick then when Lodewyk was going to do the same thing well that fridge got in the way and he was in a lot of pain. Lorena's care continues to be much work and I am glad we can continue to do this together as doing this alone is not possible yet at this point. The days I had to bring the kids to school Lorena got fed to late and everything was thrown off schedule including the pumping which I continue to try to do every 3 hours for Lorena. Lorena is 19 weeks old already and still the feeding difficulties remain. Feedings go with ups and downs but mostly we can not succeed in getting her to drink her bottles. We get many suggestions from other people who can not understand why she should have a problem drinking. Suggestions like why don't you let her get good and hungry and then surely she will drink her bottle empty or why not feed her on demand. Believe me if only it was that simple I would resort to this right away but the thing is that even when she is hungry she will not finish her bottle and then there is still the concern to keep her growing. Lorena does not take a lot of milk yet. In the last 3 weeks we were able to work up the amount she gets from 60 ml to 70 ml without her throwing it all up again. Any time we give her more then she can tolerate she vomits out the whole bottle. Still being at 70 ml is a lot less then most healthy babies who get around 150 ml at this age. We have still been feeding her every 3 hours because she could only tolerate this low volume. Most babies get fed every 4 hours at this stage. We even got such suggestions as can't you get a wet nurse to come to nurse her for you. All these suggestions are well intended but to us it show how little people understand about these feeding difficulties we struggle with and how difficult this is for us. I have enough breast milk for Lorena (as I am still pumping) and it is not a matter of me not knowing how to feed my child, I did after all do this with our other 2 children too. It is not a matter of me not knowing how to be able to bottle feed either. This feeding difficulty is because of Lorena's condition, so we can not blame her either. We continue to work together with the experts on feeding, the occupational therapist and the dietician, to find a solution, hopefully. We visited Dr. Eccles on Tuesday May 20th and her operated tummy is holding up well and so far the hernia is not coming back out again. The 1st year there is a risk that were she has been operated can start to tear and then the intestines can start to press out again and she would need an other operations. We are so thankful that so far this is not the case with Lorena. When we talked to Dr. Eccles we did hear some other discouraging possibilities again however. We discussed the feeding troubles issue with her and asked why is it that she will not feed properly, why do omphalocele babies do this? The doctor's. answer was that they have not found a logic explanation but all they know is that most omphalocele babies have feeding problems. When we asked how long Lorena could still be needing to be tube fed we were shocked to learn that a lot of O babies have a feeding tube for over 3 years. Even more shocking was to find out that if the feeding tube will be needed and no end is in sight for weening her off that they may put in a G tube (Gastrostomy Tube). The doctor told us that this G tube would be surgicaly placed into the stomac through the skin but it would be a most difficult operation for Lorena because of how everything is currently in her body. Hearing this makes us all the more determined to try to get her to feed like normal healthy babies. Dr. Eccles was well pleased with Lorena besides the feeding issue. The results of the x-ray for her lungs also came back and everything looked great, there is very little if any scar tissue on her lungs. Dr. Eccles was also pleased with the way her diaphram (she had fixed) and everything else in her chest looked on those x-rays. We are thankful for all of this. Our next appointment with Dr. Eccles is in 3 months. On Wednesday May 21st we spent all afternoon at the respiratory clinic again. Lorena got her last RSV shot as the cold season was not over yet. We also talked with the nurses and doctor about her and the respiratory Dr. was also pleased with how well she is doing and we no longer need to see this doctor anymore as all her breathing issues are resolved. However we spend most of the time with the occupational therapist and the dietician and we discussed all the possibilities in how we can help Lorena with her feeding problems. The occupational therapist and the dietician are going to be the only ones still working with us from the respiratory clinic as Lorena still has this feeding problem left that needs to be overcome if possible. In talking and trying to figure out what may be preventing Lorena from feeding better the occupational therapist was wondering if anything is irritating her esophagus, we in turn wondered if the NG tube may damage it as we pull out the old tube each week. As when we pull it out the tip is always so hard from the stomach acids and sometimes this tip has hardened in a bent shape to almost create a hard hook. You can well imagine that this would scrape all the way up as we pull it out. So with them we have decided to call the home nutrition people (where we order all the medical supplies all the time) and ask them for an other kind of feeding tube which is softer and can also stay in for 1 month at a time instead of 1 week at a time. However because of its softness this tube is much harder to get down/place. There is a trick and that is to freeze it but even then you need to put it in really fast to get it down before it melts and softens to much. Lorena is also due to get a little larger feeding tube now that she is 4 months old. An other change the dietician thought was worth trying is to start feeding Lorena every 4 hours so that hopefully Lorena will feel more hungry and feed better this does mean that we have to slowly up the amount she gets over the next week from 70 ml to 80 ml per feed. This is a welcome change for us as you can well imagine the extra hour breaks in between feeds will make things a little easier for us. We were also encouraged to start introducing a little rice cereal, just a spoonful and only putting it on her lips with no spoon into her mouth as this again may cause her to reject it, so we want to take it ever so slowly in the hope that she will not also reject these more solid foods as well as the bottle. We have also agreed with the occupational therapist to put some of Lorena's feeds on video and bring in a DVD for her to see. This way she can see how Lorena does during feeds and have ideas on how we can help Lorena to feed better. So to sum it all up Lorena is doing very well, she has come such a long way. It is not for nothing that a lot of people who know her story call her a miracle baby however the feeding struggles remain and believe me this causes a certain amount of stress not to mention the emotions that go paired with this. We are hoping that Lorena will do well on the solids so that she will not need a feeding tube for years to come. We hope you will pray with us that Lorena will learn to feed well and that she can get rid of the ng tube soon and that no G-tube operation will be neccesary in the future. As she is getting older and has overcome so much we are glad that there will be less and less appointments to keep. With each one spread out farther apart. And our schedule is looking better with only the following appointments set up so far: June 4 - Respiratory Clinic/Dietician about eating problems with more following appointments until her feeding problems are resolved June 17 - Genetics - follow up appointment to discusse blood tests results July 18 - 3rd immunization mid August - Dr. Eccles for checking omphalocele scar end of Oct. - Cardialogy for her heart Today, Thursday May 22, Lucy the home care nurse came again. She weighed Lorena and was very pleased about her weight gain. Lorena weighs 5080 grams now and gained an average of 21 grams a day over the past 3 weeks. We have noticed that Lorena is tolerating the milk better with very few spit ups now and we are also able to ng feed her faster now. Today Lucy discharged Lorena and there will be no more visits from the health care nurse. Really the only once following Lorena's progress on short term bases will be the occupational therapist and the dietician. With the surgeon, Dr. Eccles checking her every 3 months and the Cardialogist checking her every 6 months. Have you ever wonder what caused Lorena's omphalocele? Well, as a fetus is growing in the mother's uterus before birth, different organ systems are developing and maturing. Between the 6th and the 10th weeks of pregnancy, the intestines actually project into the umbilical cord as they are growing. By the 11th week of development, the intestines should return to the abdomen. When the fetus is growing and developing during pregnancy, there is a small opening in the abdominal muscles that the umbilical cord can pass through, connecting the mother to the fetus. As the fetus matures, the abdominal muscles should meet in the middle and grow together, closing off this opening. An omphalocele occurs when the abdominal organs do not return to the abdominal cavity as they should. As was the case with Lorena. It is not known what causes omphalocele. Steps that normally happen in the development of the abdominal organs and muscles simply did not happen properly. It is not known to be caused by anything the mother did during pregnancy. Because some family members have let us know that they have no interest in Lorena or her difficulties we have decided that it is time to stop sending out the updates to everyone via email. For those of you who would like to continue to follow her story I will post a new update on our website every month. So you can bookmark our website and look it up if you would like to do this. http://www.telusplanet.net/public/lorejj20/index.htm For those of you who would really like to receive the updates via email (either for the 1st time or to continue to receive them via email) rather then to look them up on our website, I ask you to send me an email to let me know as I will then add your email address to the new list I am making. This list will only contain the email address of the people who will let me know they want to receive these updates via email. We want to thank you for your continued prayers for the healing of Lorena's heart as well as for the feeding issues. Greetings from a soggy wet Calgary, Lodewyk, Rena, Janita, Jeremy & Lorena The first time for Lorena to spend some time enjoying the back yard. Can those eyes get any bigger? " Peanut" is what my brother named this TY elephant I got as a gift from daddy's co workers. I love it because the legs and trunk are so easy to grab and besides I like to suck on that trunk. Yip, I am actually getting a bit more chubby legs now. A family picture taken in the back yard. You gotta love those self timers on the camera. Our 3 wonderful blessings. Best Buds! Lorena enjoying the ride in her stroller. Going for a walk with mom & dad while Janita & Jeremy rode their bikes. Lorena drinks her bottles best when she is asleep. Don't worry, I will help you hold the bottle mom! Pull out that bottle while she is sleeping and her mouth stays open like she is still drinking......... ................and then she gives those beautiful smiles when she is all full and satisfied. Look mom, I can stand up!