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As always we have been taking her back to the Alberta Children's Hospital for lots of appointments. The last appointment we had was with Dr. Eccles (her surgeon) again. Dr Eccles checked the scar on her stomach and felt the muscle tissue below and she was well pleased at how well it is holding and that new tissue is growing and it is becoming a firmer spot. She did warn us that as Lorena gets more fat on her body (which does not seen to be happening yet) that the scar may stay deep down where as on both sides of the scar it will grow out so that the scar may become like a crease on her body. She said this would be something that would happen down the road but she said that this can be corrected with an operation when she is much older. To us this seems all to far off in the future to really worry about it but what has caused me more worry is the news the Dr. gave about Lorena getting a G-tube. I am very nervous about the idea of Lorena getting an other operation to put a G-tube into her stomach and then coming out of her body so that we can feed her through that and she will not need the NG tube anymore. Dr. Eccles told us to think about doing this when she is 1 year old and still not feeding properly. When I told her I don't like that idea at all she said that if we don't decide for our self after she is a year when to get the G-tube that she will make that decision for us at age 2 for sure. The Dr. explained that Lorena is getting older now and more aware of what is happening to her. So here we are the parents that love her and the once that Lorena fully trusts but yet here we are the parents that inflict this pain each week by putting in the new NG tube. With her getting older we already see that Lorena is a smart girl and she knows as soon as we wrap her up, that the NG tube is coming and she starts to cry loudly. Mom here, dreads the moments of putting in the NG tube but it must be done to keep her growing and alive. The Dr. also told us that as she gets older it will become a fight to keep the NG-tube in. We have already noticed that Lorena is pulling it out more and more and we are for ever re- taping it on her face as the stickers do not stay as well anymore. Also the Dr. said it will become a battle with lots of sinus infections happening because of this NG-tube. All in all I know we need to start thinking seriously about getting the G-tube operated in but to be honest I am not yet ready for this. I think I need more time to think and pray about it as right now I don't feel ready for this at all. I cringe at the idea that she will be operated again and that she will have a wound again, as it will take 6 weeks of dressing this wound to make sure no infection appears before it is closed around the G-tube. Really I am hoping & praying that some how Lorena would start cup drinking well by the time she is 1 year. The cup drinking is not looking good now as she started so well but is refusing most cups now and I am afraid she may not start drinking herself again. I feel like I am praying for a miracle to happen that she may indeed start to drink well on her own so that no ng-tube or G-tube will be needed. I know that with normal healthy children drinking seems an ordinary thing however with Lorena it will be a miracle to us if she starts to drink all she needs to live on. So far the most she ever drank from a cup was a total of 50 ml per day and no baby can live on those few sips.

I would like to ask for your prayers. I know in the beginning Lorena was prayed for by so many people and we know the Lord has answered our prayers with the miracle of keeping her alive at a time when we thought we would loose her. I know this prayer does not seem as urgent but please pray that Lorena would start to drink so that no feeding tubes will be needed anymore. Please pray that if the Lord decides otherwise that He will give us renewed strength and to help us through what ever roads we must travel with Lorena. I know Lorena has come a long ways and she is such a joy to have. Some people tell us "she must be such a worry to you" but to be honest I do prefer to think of her as the huge blessing she is to us. Lorena is a very special girl and though she has endured much she is such a joyful child and so full of energy. Lorena is not your average cuddly baby. She does not like to lay in our arms and barely even likes to sit on our lap, certainly not still. Lorena likes to stand up and bounce around. She spends most of her awake time in her green seat where she can stretch her legs and stand or just let her self hang in the seat. She also loves her jolly jumper and jumps wildly around just loving that bounce. She starts each wake up time with a huge smile as soon as we pick her up out of her cradle (yes she still fits and sleeps in her cradle) and she gives us many wonderful smiles through out the day. She is also ticklish and when we tickle her stomach she giggles loudly. Just in the last 2 days Lorena started sitting up without support for a short period of time. Lorena is still small for her age and the last time she was weighed on Aug. 5th she was 6.035 kg or a little over 13 pounds.

Last month we met Brennah, an other O baby and her mom, Sabrina in the hospital. So we exchanged emails and got together last month. Brennah is a brave little girl. She and her parents have been through a lot. Brennah was born just 9 days after Lorena and she too was operated by doctor Eccles. When Sabrina went in for her 18th week ultrasound they did not miss the omphalocele. The ultrasound confirmed that Brennah had a large omphalocele (containing, stomach, liver and all intestines). Due to the situation Sabrina was considered a high risk pregnancy and was not able to do any physical activity. Sabrina was told that she could not have a normal birth but had to undergo a c-section. She was scheduled to have a c-section on Feb 4th 2008, and as the weeks went on and the doctors saw how well Brennah was growing they decided to push the c-section to Feb 12, 2008. But on January 25, 2008 Sabrina went into labour. Sabrina had to have an emergency c-section. Then the fight for Brennah's life began.

January 25, 2008 10:25am Brennah Elizabeth Flora Hordal was born at 3lbs 9oz. She was taken to NICU immediately, I just saw a glimpse of her. They wrapped her omphalocele up and intibated her and checked her out. They found that she has a murmur so did an echo on her. They found that she has 2 holes in her heart. An ASD and a VSD (just like Lorena). They finished with me and rolled me to NICU to see Brennah from a distance, I couldn't even touch her. I was so happy yet so sad, if I had not had an epidural and could feel my legs then I would have jumped off of that gurney and touched my baby girl.

Brennah was brought over to the ACH for immediate surgery. During surgery (7 hrs) her liver kept bleeding out resulting in them having to stop. They were not able to close her up at this point as her liver was still out. They enclosed her liver in a silo bag and admitted her into the ICU. The following day I was able to have an afternoon pass from the Foothill's to see Brennah at the ACH. I was so excited, but when I saw her I was so sad. She was so puffy from the anistetic and looked so sick.

A week later Dr. Eccles operated on her again and this time was able to close her skin. Unfortunately, she did not have enough muscles to close that up so she still has a bump (hernia). This will be closed when she is about 2-3 years old.

We were told that she would be extibated about 2-3 days after her surgery. they wanted to make sure that when the meds wore off she would be ok. A couple of days passed, a week passed and then they told us that they would have to give her a tracheostomy. I was devastated as this meant that she would have that for at least 4-5 years. I wanted to be able to hear my baby talk! I was mad because they did not really even try her off the machine. The doctor (not Dr. Eccles) said that the numbers were telling them that she cannot breath on her own. I advised that the et tube also had a leak because we can hear her cry when we should not have. The RT's said that they don't think that the numbers were correct because of the leak so they petitioned that Brennah be extibated and try the CPAP instead, and if that did not work then we would consider the tracheostomy. The doctor agreed. They extibated her the next day Feb 13, 2008, she breathed fine on her own. I was so happy. They moved her out of ICU and onto Unit 2 on Feb 14, 2008.

We found that because of the VSD (hole in her heart) Brennah had to work extra hard to pump the blood through the lungs, so then she would burn more calories. They gave her o2 through the nose prongs. This helped and she started to gain about 20-25 grams a day. She was feed by NG for the first while. Then we introduced the bottle to her. I was given a time from of 30 mins to feed by bottle, if she did not finish her 30 mls by 30 mins then the rest had to be fed through the NG.

Feb 29, 2008 she was given the green light to go home! I was so happy. A week later she was off of the NG feedings and feeding great by bottle. She also hit 5lbs.

We had a couple visits to the emergency and a couple of stays back on unit 2 but nothing since April.

Brennah has been taken off of the O2 during the day (still has to be on at night for the next month). She is growing, now 9lbs 10oz and so happy. We have been blessed with such a wonderful baby. Her strength is remarkable and I thank God every day for her.

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When we met, Sabrina showed me that Brennah's toe was broken from the nurses binding her foot to tight for the IV and now her one toe grew under the other toe and it will need to be rebroken. Poor baby, why do they make such mistakes? Worse yet one time a nurse took to much blood from Brennah and in the evening when they were home Brennah went into heart failure and they had to rush her to the hospital. Still what shoked me most was how the one doctor really wanted to give Brennah a tracheostomy for 4 to 5 years and then Brennah could not learn to talk those years. Sabrina fought against this as she felt this was unneccasary. Like us they have experienced the blessings & the night mares caused by medical staff. There are so many mistakes made that almost cost lives yet it is the doctors who have helped our babies survive. Sabrina and I are keeping in touch and we will be getting together with our O babies from time to time.


	Lorena's Summer
	August 30, 2008 Hello Everyone, It has been almost 2 months ago when I send out my last update and people are wondering how Lorena is doing so it is time for a new update. The summer has flown by and soon the older kids will be back in school. Lorena is now over 7 months old already but she is still living with the feeding tube all the time. We quit the medication for acid reflex as they did not help her at all. So she probably does not have this problem. No progress has been made with bottle feeding Lorena and we have agreed with the OT (occupational Therapist) that Lorena will most likely never be a bottle drinker. She only drinks a portion of 1 of her bottles in the early AM. All the other bottles we still offer her each time during the day she refuses 99% of the time. So she is feeding worse. She is now at the point where she will start to gag on the bottle as soon as it hits her lips. Feeding the solids twice a day is going with ups and downs now. She does not seem to enjoy it as much any more as in the beginning. So sometimes she eats very little and other times she eats well. She is a smart girl however because she knows what she likes and only the things she likes she will open her mouth for. Her absolute favorite is sweet potatoes but we have been warned to make sure that she does not kill off a food. So in other words feed the same thing so much that she gets to a point where she will not like it any more and never touch it again. We still continue to cup feed milk twice a day too but it is no longer thickened. She seems not to like her cup drinking anymore as most times she only takes very little or non. Still I patiently keep trying with each solid feed meal I give her. At a little over 6 months I weaned off from the pumping and so now Lorena is getting just Similac and that seems to go well. Having stopped the pumping has given me a lot of time back in a day and things seem a lot more relaxed now. We have also become much more familiar with the NG feeds and after 7 months of tube feeding Lorena, we have become experts at it.....well....... almost. We have become relaxed enough with it that now we feel comfortable taking her out for a whole day. We have had 2 outings in the last few weeks. We visited family and the older kids got to go horse back riding with their cousins while we spend time along the Old man river with Lorena. Last week we also went to Sylvan Lake for a day of swimming and Lorena got to swim for the 1st time in her live. We had a little floatie for her and tried to take pictures of her but she hardly looked up as she was fascinated by the water which was running into her floating car. She loved the water and could not get enough of it. My heart always fills with thankfulness each time I see Lorena experience something new. It was such a joy to see her discover what a lake feels like. Lorena is doing really well. She is putting a little baby fat on those legs and she continues to gain about 13 grams a day. She has grown out of a lot of her clothing as she has also grown a lot in length. She is sure getting older and quicker as well. She has managed to pull out her NG tube quite a few times already. Which results in us having to put in a whole new NG tube. No one likes this procedure as Lorena screams and cries and we know it hurts for her. As always we have been taking her back to the Alberta Children's Hospital for lots of appointments. The last appointment we had was with Dr. Eccles (her surgeon) again. Dr Eccles checked the scar on her stomach and felt the muscle tissue below and she was well pleased at how well it is holding and that new tissue is growing and it is becoming a firmer spot. She did warn us that as Lorena gets more fat on her body (which does not seen to be happening yet) that the scar may stay deep down where as on both sides of the scar it will grow out so that the scar may become like a crease on her body. She said this would be something that would happen down the road but she said that this can be corrected with an operation when she is much older. To us this seems all to far off in the future to really worry about it but what has caused me more worry is the news the Dr. gave about Lorena getting a G-tube. I am very nervous about the idea of Lorena getting an other operation to put a G-tube into her stomach and then coming out of her body so that we can feed her through that and she will not need the NG tube anymore. Dr. Eccles told us to think about doing this when she is 1 year old and still not feeding properly. When I told her I don't like that idea at all she said that if we don't decide for our self after she is a year when to get the G-tube that she will make that decision for us at age 2 for sure. The Dr. explained that Lorena is getting older now and more aware of what is happening to her. So here we are the parents that love her and the once that Lorena fully trusts but yet here we are the parents that inflict this pain each week by putting in the new NG tube. With her getting older we already see that Lorena is a smart girl and she knows as soon as we wrap her up, that the NG tube is coming and she starts to cry loudly. Mom here, dreads the moments of putting in the NG tube but it must be done to keep her growing and alive. The Dr. also told us that as she gets older it will become a fight to keep the NG-tube in. We have already noticed that Lorena is pulling it out more and more and we are for ever re- taping it on her face as the stickers do not stay as well anymore. Also the Dr. said it will become a battle with lots of sinus infections happening because of this NG-tube. All in all I know we need to start thinking seriously about getting the G-tube operated in but to be honest I am not yet ready for this. I think I need more time to think and pray about it as right now I don't feel ready for this at all. I cringe at the idea that she will be operated again and that she will have a wound again, as it will take 6 weeks of dressing this wound to make sure no infection appears before it is closed around the G-tube. Really I am hoping & praying that some how Lorena would start cup drinking well by the time she is 1 year. The cup drinking is not looking good now as she started so well but is refusing most cups now and I am afraid she may not start drinking herself again. I feel like I am praying for a miracle to happen that she may indeed start to drink well on her own so that no ng-tube or G-tube will be needed. I know that with normal healthy children drinking seems an ordinary thing however with Lorena it will be a miracle to us if she starts to drink all she needs to live on. So far the most she ever drank from a cup was a total of 50 ml per day and no baby can live on those few sips. I would like to ask for your prayers. I know in the beginning Lorena was prayed for by so many people and we know the Lord has answered our prayers with the miracle of keeping her alive at a time when we thought we would loose her. I know this prayer does not seem as urgent but please pray that Lorena would start to drink so that no feeding tubes will be needed anymore. Please pray that if the Lord decides otherwise that He will give us renewed strength and to help us through what ever roads we must travel with Lorena. I know Lorena has come a long ways and she is such a joy to have. Some people tell us "she must be such a worry to you" but to be honest I do prefer to think of her as the huge blessing she is to us. Lorena is a very special girl and though she has endured much she is such a joyful child and so full of energy. Lorena is not your average cuddly baby. She does not like to lay in our arms and barely even likes to sit on our lap, certainly not still. Lorena likes to stand up and bounce around. She spends most of her awake time in her green seat where she can stretch her legs and stand or just let her self hang in the seat. She also loves her jolly jumper and jumps wildly around just loving that bounce. She starts each wake up time with a huge smile as soon as we pick her up out of her cradle (yes she still fits and sleeps in her cradle) and she gives us many wonderful smiles through out the day. She is also ticklish and when we tickle her stomach she giggles loudly. Just in the last 2 days Lorena started sitting up without support for a short period of time. Lorena is still small for her age and the last time she was weighed on Aug. 5th she was 6.035 kg or a little over 13 pounds. Janita loves her sister and she loves to care for her sister. So these past 2 months we have let Janita do a lot of bonding and caring for her baby sister. This has given us more time to do some other things as well. Jeremy too loves his sister and likes to play with her. The kids have really enjoyed their summer with their new sisiter even though we did not go on holidays this year. As Lorena is getting older it will soon be time for Lodewyk to return to work. Lodewyk's parental leave will come to an end at the beginning of October when he will need to return to his work at Nortel. We were a little stressed out a few months ago when we heard the news that Nortel is closing the doors in Calgary by May 2009. Would Lodewyk loose his job at this time in our live? As it turned out we are very thankful that Lodewyk was 1 of few people chosen out of over 200 to set up a home office and work from home after May 2009. Others got job offers to Beijing, China or Ottawa and there were also a lot of lay offs again. Lodewyk has been with Nortel since 1990 and we are sad to see the building close in Calgary and see some colleages lose their jobs. I have been so thankful that Lodewyk was able to take parental leave as I would not have been able to take care of Lorena alone in the beginning. Over the last months Lodewyk has been able to take on a project again and he built a shed beside our house and is still finishing the little patio in front of it. Lodewyk is a real handyman and enjoys doing jobs like these around the house and so it has been good for him to be able get out and do non-baby related things again. Last month we met Brennah, an other O baby and her mom, Sabrina in the hospital. So we exchanged emails and got together last month. Brennah is a brave little girl. She and her parents have been through a lot. Brennah was born just 9 days after Lorena and she too was operated by doctor Eccles. When Sabrina went in for her 18th week ultrasound they did not miss the omphalocele. The ultrasound confirmed that Brennah had a large omphalocele (containing, stomach, liver and all intestines). Due to the situation Sabrina was considered a high risk pregnancy and was not able to do any physical activity. Sabrina was told that she could not have a normal birth but had to undergo a c-section. She was scheduled to have a c-section on Feb 4th 2008, and as the weeks went on and the doctors saw how well Brennah was growing they decided to push the c-section to Feb 12, 2008. But on January 25, 2008 Sabrina went into labour. Sabrina had to have an emergency c-section. Then the fight for Brennah's life began. For those of you who are interested in reading Brennah's Story as Sabrina wrote it to me, you can find it below. We want to thank you for your continued prayers for Lorena. We will send out an other update again in about 2 months at the end of October to keep you informed on Lorena's progress. Lodewyk, Rena, Janita, Jeremy & Lorena Brennah's Story as her mom Sabrina wrote it: January 25, 2008 10:25am Brennah Elizabeth Flora Hordal was born at 3lbs 9oz. She was taken to NICU immediately, I just saw a glimpse of her. They wrapped her omphalocele up and intibated her and checked her out. They found that she has a murmur so did an echo on her. They found that she has 2 holes in her heart. An ASD and a VSD (just like Lorena). They finished with me and rolled me to NICU to see Brennah from a distance, I couldn't even touch her. I was so happy yet so sad, if I had not had an epidural and could feel my legs then I would have jumped off of that gurney and touched my baby girl. Brennah was brought over to the ACH for immediate surgery. During surgery (7 hrs) her liver kept bleeding out resulting in them having to stop. They were not able to close her up at this point as her liver was still out. They enclosed her liver in a silo bag and admitted her into the ICU. The following day I was able to have an afternoon pass from the Foothill's to see Brennah at the ACH. I was so excited, but when I saw her I was so sad. She was so puffy from the anistetic and looked so sick. A week later Dr. Eccles operated on her again and this time was able to close her skin. Unfortunately, she did not have enough muscles to close that up so she still has a bump (hernia). This will be closed when she is about 2-3 years old. We were told that she would be extibated about 2-3 days after her surgery. they wanted to make sure that when the meds wore off she would be ok. A couple of days passed, a week passed and then they told us that they would have to give her a tracheostomy. I was devastated as this meant that she would have that for at least 4-5 years. I wanted to be able to hear my baby talk! I was mad because they did not really even try her off the machine. The doctor (not Dr. Eccles) said that the numbers were telling them that she cannot breath on her own. I advised that the et tube also had a leak because we can hear her cry when we should not have. The RT's said that they don't think that the numbers were correct because of the leak so they petitioned that Brennah be extibated and try the CPAP instead, and if that did not work then we would consider the tracheostomy. The doctor agreed. They extibated her the next day Feb 13, 2008, she breathed fine on her own. I was so happy. They moved her out of ICU and onto Unit 2 on Feb 14, 2008. We found that because of the VSD (hole in her heart) Brennah had to work extra hard to pump the blood through the lungs, so then she would burn more calories. They gave her o2 through the nose prongs. This helped and she started to gain about 20-25 grams a day. She was feed by NG for the first while. Then we introduced the bottle to her. I was given a time from of 30 mins to feed by bottle, if she did not finish her 30 mls by 30 mins then the rest had to be fed through the NG. Feb 29, 2008 she was given the green light to go home! I was so happy. A week later she was off of the NG feedings and feeding great by bottle. She also hit 5lbs. We had a couple visits to the emergency and a couple of stays back on unit 2 but nothing since April. Brennah has been taken off of the O2 during the day (still has to be on at night for the next month). She is growing, now 9lbs 10oz and so happy. We have been blessed with such a wonderful baby. Her strength is remarkable and I thank God every day for her. --------------------------------------------------------------------------------------------------- When we met, Sabrina showed me that Brennah's toe was broken from the nurses binding her foot to tight for the IV and now her one toe grew under the other toe and it will need to be rebroken. Poor baby, why do they make such mistakes? Worse yet one time a nurse took to much blood from Brennah and in the evening when they were home Brennah went into heart failure and they had to rush her to the hospital. Still what shoked me most was how the one doctor really wanted to give Brennah a tracheostomy for 4 to 5 years and then Brennah could not learn to talk those years. Sabrina fought against this as she felt this was unneccasary. Like us they have experienced the blessings & the night mares caused by medical staff. There are so many mistakes made that almost cost lives yet it is the doctors who have helped our babies survive. Sabrina and I are keeping in touch and we will be getting together with our O babies from time to time. July 1, 2008 Celebrating Canada day, with friends, in our back yard. Lorena loves her Taggies stuffed animal. What an amazing invention these stuffies are. All those little tags keeps Lorena occupied while being tube fed. Time to wake up big sister Janita and sit in her bed for a while. All dressed up like a little princess. Oops, my head is still a little small for this hat mom! Can I have that spoon please! Lorena in one of the feeding sessions with Donna, the occupational therapist. I love my daddy! That's hilarious, that's the best joke I ever heard! I don't like to suck on a bottle, I would much rather be sucking my toes! Lorena having fun in her car seat. Oooh yes, I am ticklish! Two beautiful O babies. Lorena making friends with baby Brennah. Falling asleep while eating supper. I like it when my sister shares her glasses with me. Sitting in her seat and looking out the window while mom sneaks up outside to take this pictures through the window. Janita & Jeremy going horseback riding. Enjoying the sun at the old man river. We forgot Lorena's hat so she wore ours. J & J got to go horseback riding with cousins Adrilyn & Corne. I am having a whale-y good time with my brother! In the park behind our house. Hey, Janita this car is to big for me, please hold me tight. Spending a day at Sylvan Lake. What a life! Floating on an air matress with my brother pushing it is soooooo fun. Giggle, giggle, giggle I am as happy as can be! Lorena spends most of her wake time in her green seat. Here she is leaning back to look up for the picture. I love jumping around in my Jolly Jumper!