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Dear Family & Friends,

Perhaps this is not a good evening to start on this update as my mood is low. Both Lodewyk and I are exhausted like never before in our lives. The lack of sleep is on going and after 5 months it still does not seem to get a whole lot better. We shifted to feeding Lorena every 4 hours about a month ago but this means she is not sleeping a 6 hour stretch anymore but just 4 hours at night. I am up later then before and often don't get to bed until 2 am or even later sometimes. I think because we have been going like this for 5 months already the tiredness is really setting in. Tonight I decided to hold down the fort alone and send Lodewyk off to bed at 7 pm so that he can catch up on his rest once. Lorena's 9 pm feed, which I just did, went something like this as do a lot of her feeds lately. I try to feed her the bottle and spend 15 minutes trying but she takes none. So I put on the NG feed for her and spend an hour sitting with her regulating the flow, she is almost done and she starts to cry and I hop around show off all the toys because if she cries to much she will throw up. It did not work tonight and she starts to throw up. First a little bit and then she keeps throwing up until all of her bottle is back out and all over herself. By this point being so tiered and seeing all my efforts go down the drain once again I am in tears. Time to change her and bath her and usually we would start the feed again to replace this bottle but tonight I am to frustrated and just can not handle it at this moment. So I decided to put her in her cradle (she is sleeping now) and start her next feed earlier at just before midnight. A healthy 5 month old baby would take about 15 to 20 min to feed so about 2 hours a day of feeding time but Lorena takes about 8 hours a day to feed not to mention the 2 hours a day extra I spend pumping. We are getting to a point were we are wondering if it will ever get better.

Still having voiced our frustration we are on the other hand extremely thankful that Lorena is starting to eat her solid food very well. This was a worry for us as if she would not take her solids she could be on a feeding tube for 3 years. We have been giving her some different baby foods and she is taking them well. On June 4th we went in for a feeding assesment. The occupational therapist and the dietician made recommendations to us and we tried feeding Lorena solids there. It was her first time in a high chair and because she is so tiny there were towels all around and under her or else her nose would be level to the tray. Lorena took the rice cereal well and also loved the pears. She ate so well that we were all very thrilled. We came home very encouraged that perhaps she would eat her solids well and not need the NG tube so long. We have been feeding her solids 2 times a day. We started very slow with just rubbing it onto her lips with my finger and then rubbing the food on with the back of the spoon. Now she loves eating from a spoon and she seems to love her solid foods. For a healthy baby this is just normal progress but for Lorena this was not a given and so you can well imagine our joy in seeing her take her solids very well. This is real progress!!!! Even though the dietician told us that sometimes they start well but then quit we continue to be thankful for how well she is taking her solid foods over the past weeks and we are very hopeful she will continue this.

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An other day, an other mood! Today (June 20) is my birthday and that makes me a very old 41 year old mommy. Some of you may laugh at this but I sure can feel that I am not 26 anymore. I now have tendinitis (torn muscles) in both shoulders (had it in one shoulder for the past 1 1/2 yr) and so even holding Lorena hurts but the worst part is when I accidently make a sudden move or I reach to far because then pain shoots through my shoulder and I know that I have torn the muscles yet again. Yes, Lorena's parents are getting older fast. Today is her mom's turn to get a year older and tomorrow (June 21) is her daddy's turn to celebrate his birthday. Exactly how do we celebrate our birthdays this year? Well, we have decided to not do anything much this year as our days are full enough with Lorena's care and we are both very tiered. As for the birthday gift well we figured that we got a really nice birthday gift this week, as with our visit on June 18th to see the occupational therapist and dietician for an other feeding assesment they decided to do a schedule change for Lorena's feeding. This schedule means that for the 1st time since Lorena came home we get to go to bed and sleep at the same time again. It means that we will actually get to bed before midnight and Lorena will sleep a 6 to 7 hour stretch at night. Still with this schedule we ran in to trouble as her solid feeds were to close to the next bottle and so she would throw up her bottles even more. We have readjusted it a bit and had to kind of stretch it out so that her last feed is not at 10 pm but at 11 or 11:30 pm. However the schedule change was not our only birthday gift as Lodewyk gave me flowers and a cool scanner (which scans pictures, slides and negatives) for my birthday (I am so thrilled with this gift). The kids are growing up too as this year they decided to get a gift too and so Janita gave me a nice movie & hand cream and Jeremy decided that he was going to pick out the prettiest flowers for mom and came home with a nice bunch of pink roses, another 3 yellow roses and a balloon for mom.

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The weather was beautiful on my birthday so we were able to eat outside for the 1st time and I even fed Lorena outside as well. For Lodewyk's birthday we did end up going to the Chinese restaurant around the corner for lunch. Lorena cooperated well and was not fussy at all. It was nice to be out with all of us and a real treat to be able to do this. For those of you in Holland who are reading this I want to let you know that on the tv at the restaurant the soccer game between the Netherlands and Russia was on. We never watch soccer but since it was Holland playing we thought it would be nice to see how good they are. We were disappointed when Russia scored the 1st goal and soon after we left the restaurant. From friends (soccer fan) we later heard that Russia beat Holland 3 to 1. What is the matter with the Dutch team?

Lorena eats her solids well but with her solids we also have to try to do a little cup feeding now as it does not look like she will ever take her bottles well. This cup is actually a little medicine cup. I thicken the milk up a little with rice cereal so that it flows a little slower. Have you ever tried cup feeding a 5 month old baby? To be honest this is a frustrating task but in a way it is also pretty funny. Perhaps depending on my mood weather I think it is funny or frustrating. I try holding this little cup to her lips but then she swings her head from left to right and back and forth at 50 miles an hour....well. Half the time I think I am pouring it into her mouth and suddenly her mouth is gone and I am pouring it into the air down onto her bib. Or she sticks her tong into it so good and hard that the whole thing tips and pours over her bib yet again. Cup feeding actually works best when Jeremy is around as he knows how to entertain her and hold her attention so that I can let her drink and she actually holds still because her attention is fixed on Jeremy. Right now I cup feed her 20 ml twice a day. This and the solids we feed need to make up for the one feeding time we dropped with the new schedule. Hopefully she will continue to gain weight on this new schedule. Lorena is gaining about an average of 13 grams a day so not the ideal 20 - 30 grams but she is continuing to gain weight and we are thankful for that. When she was weighed last on the 18th of June she weighed 5.45 kg. Lorena is now 5 months old and she still wears some of her newborn clothing yet. She also still sleeps in her cradle as she is still small enough. Most people who see her in real life and have also seen her pictures tell us that the pictures are deceiving and she actually looks a lot smaller in real life then the pictures show.

As for Lorena's development......well, she seems to be fast with everything. At 3 months she started to turn onto her belly and just this month at 4 1/2 months she is starting to crawl a bit. She rolls onto her tummy and manages to move her legs enough to move forward. She also likes to observe and she seems to see everything no matter how little. It is becoming harder with the NG feeds as she turns her head and sees that neat line and of course reaches and grabs it really quick. So we try try to hide it under the sheet now and watch her like a hawk as when she grabs it she could pull the lines apart so it starts to spill out or even pull the NG tube out of her nose.

We looked into using a softer NG tube so that we would only have to change it every month. However others recommended agains it as babies grow so much in a month that this tube could leave indents, so in essence her body would grow around it. Also they said her nose would become sore for having it in one side for so long. So we continue to change the NG tube each week and Lorena screams/cries as it is a painful procedure getting that new hose going down into her stomac.

Lorena is now also taking medication for acid reflux (kind of heartburn or to high acid in her stomac). At this point we are not sure if she has this but if she does this may be the cause that she does not want to drink her bottles. So for now the medication is being used to see if she will start taking her bottles. She did take one of her bottles completly a few days ago but that was the only one. The experience however of having her drink the whole bottle in 15 minutes was wonderful and gave us a tast of how easy feeding her could be. It made us wish all the harder and pray that this medication would actually work and she would start drinking all her bottles.This would save us about 6 hours a day but I think it is just wishful thinking as so far we have not seen any improvement except for that one time. Lorena takes a little bit from only about 2 bottles per day all the rest she continues to refuse.

This month has been a bussy one in more ways as we also had my parents over for a 10 day from Ontario. We were glad they could come and see Lorena for the 1st time and spend some time with our family but it also made it more bussy for us. The 1st weekend they were here we also had Lodewyk's brother and his family from Nova Scotia stay for 2 days on Friday and Saturday. It was nice they came with their camper and we did not have to worry about finding more room for them to sleep. The following Sunday was an other bussy one as after having gone to church in the AM we rushed to eat lunch as an aunt and uncle from Holland came for an afternoon visit. It was nice to see them again after 8 years but when they left we rushed off to the kids piano recital. The Piano recital was really neat this year as all the kids were playing a piece of music that they had composed themselfs. Jeremy wrote a fun piece which he named "Jeremy flipping glasses" and Janita wrote a beautiful piece called "Oceaan sunset". At the end the rewards were given and Jeremy won a chocolat bar. Janita won some candies in a cup but she also won the trophy award for Top Composition. Janita had won the award for the best composition. Now as parents we realize that she not only has a talent for playing piano but also to compose pieces.

All in all Lorena is doing well and we thank the Lord each day for this precious little girl who is always so quick and eager to give us her sweet little smiles. She is quick in many ways and just yesterday started to roll over on her mat and lift up her head and look around for quite some time before putting her head back down. She also is often not happy to just sit on your lap but would rather stand up. She is very strong and healthy looking now and we continue to be amazed at how well Lorena has recovered from the omphalocele. Only the NG tube which she is always wearing on her face is a give away that she is not your average healthy baby. Still with the schedule change we are gaining back some more normality in our lives. We are also glad the other kids are off from school as that relaxes things around the house even more. No more bringing and picking them up and no more homework to help out with etc. Instead we have 2 little helpers around the house. Janita loves to take care of her baby sister and we have even been able to go out for some needed stuff for a few hours at a time while Janita babysits. In the next month I also want to wean Lorena off of the breast milk slowly so that I can eventually quit pumping as this really ties us down and before the summer is over we would like to go out for a few days here and there. We will not be going on holidays ( we usually like to go camping) this year as that is to much hassle with the NG feeds for Lorena. So instead we will have a back yard holiday which is fine too as with all the work we did in our backyard over the last years it is a joy to just sit outside and enjoy the plants and flowers.

For those of you at Woodgreen Presbeterian, this will be the last time that I am sending the update to the Woodgreen office, who has been forwarding it to all of you. I don't think all of you understood this so if you want to receive any future updates via email then please let me know and I will add your email address to the mailing list. I have one list which I copy and paste into the mail send out so it takes very little time to add your email address. I will still also continue to post it on our website so you can also look it up yourself at the beginning of each month.

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

I am not yet sure as to when I will send out the next update. Perhaps I will take a break until the end of the summer vacation and send out the next update by August 30. However if I get the itch to write again I may send the next one after a month at the end of July. So for those of you who check the website for updates it is best to check at the beginning of each month to see if a new update has been posted. Or if you prefer to be added to the mailing list, it is easier as you will just see the update appear in your mailbox, just let me know.

To all of you we want to thank you for your support and interest you have shown/show in Lorena's progress.

We want to wish you all a wonderful summer!

With Love LRJJL

The Brobbel Family


	Lorena is Cup Feeding
	June 29, 2008 Dear Family & Friends, Perhaps this is not a good evening to start on this update as my mood is low. Both Lodewyk and I are exhausted like never before in our lives. The lack of sleep is on going and after 5 months it still does not seem to get a whole lot better. We shifted to feeding Lorena every 4 hours about a month ago but this means she is not sleeping a 6 hour stretch anymore but just 4 hours at night. I am up later then before and often don't get to bed until 2 am or even later sometimes. I think because we have been going like this for 5 months already the tiredness is really setting in. Tonight I decided to hold down the fort alone and send Lodewyk off to bed at 7 pm so that he can catch up on his rest once. Lorena's 9 pm feed, which I just did, went something like this as do a lot of her feeds lately. I try to feed her the bottle and spend 15 minutes trying but she takes none. So I put on the NG feed for her and spend an hour sitting with her regulating the flow, she is almost done and she starts to cry and I hop around show off all the toys because if she cries to much she will throw up. It did not work tonight and she starts to throw up. First a little bit and then she keeps throwing up until all of her bottle is back out and all over herself. By this point being so tiered and seeing all my efforts go down the drain once again I am in tears. Time to change her and bath her and usually we would start the feed again to replace this bottle but tonight I am to frustrated and just can not handle it at this moment. So I decided to put her in her cradle (she is sleeping now) and start her next feed earlier at just before midnight. A healthy 5 month old baby would take about 15 to 20 min to feed so about 2 hours a day of feeding time but Lorena takes about 8 hours a day to feed not to mention the 2 hours a day extra I spend pumping. We are getting to a point were we are wondering if it will ever get better. Still having voiced our frustration we are on the other hand extremely thankful that Lorena is starting to eat her solid food very well. This was a worry for us as if she would not take her solids she could be on a feeding tube for 3 years. We have been giving her some different baby foods and she is taking them well. On June 4th we went in for a feeding assesment. The occupational therapist and the dietician made recommendations to us and we tried feeding Lorena solids there. It was her first time in a high chair and because she is so tiny there were towels all around and under her or else her nose would be level to the tray. Lorena took the rice cereal well and also loved the pears. She ate so well that we were all very thrilled. We came home very encouraged that perhaps she would eat her solids well and not need the NG tube so long. We have been feeding her solids 2 times a day. We started very slow with just rubbing it onto her lips with my finger and then rubbing the food on with the back of the spoon. Now she loves eating from a spoon and she seems to love her solid foods. For a healthy baby this is just normal progress but for Lorena this was not a given and so you can well imagine our joy in seeing her take her solids very well. This is real progress!!!! Even though the dietician told us that sometimes they start well but then quit we continue to be thankful for how well she is taking her solid foods over the past weeks and we are very hopeful she will continue this. --------------------------------------------------------------------------------------------------------- An other day, an other mood! Today (June 20) is my birthday and that makes me a very old 41 year old mommy. Some of you may laugh at this but I sure can feel that I am not 26 anymore. I now have tendinitis (torn muscles) in both shoulders (had it in one shoulder for the past 1 1/2 yr) and so even holding Lorena hurts but the worst part is when I accidently make a sudden move or I reach to far because then pain shoots through my shoulder and I know that I have torn the muscles yet again. Yes, Lorena's parents are getting older fast. Today is her mom's turn to get a year older and tomorrow (June 21) is her daddy's turn to celebrate his birthday. Exactly how do we celebrate our birthdays this year? Well, we have decided to not do anything much this year as our days are full enough with Lorena's care and we are both very tiered. As for the birthday gift well we figured that we got a really nice birthday gift this week, as with our visit on June 18th to see the occupational therapist and dietician for an other feeding assesment they decided to do a schedule change for Lorena's feeding. This schedule means that for the 1st time since Lorena came home we get to go to bed and sleep at the same time again. It means that we will actually get to bed before midnight and Lorena will sleep a 6 to 7 hour stretch at night. Still with this schedule we ran in to trouble as her solid feeds were to close to the next bottle and so she would throw up her bottles even more. We have readjusted it a bit and had to kind of stretch it out so that her last feed is not at 10 pm but at 11 or 11:30 pm. However the schedule change was not our only birthday gift as Lodewyk gave me flowers and a cool scanner (which scans pictures, slides and negatives) for my birthday (I am so thrilled with this gift). The kids are growing up too as this year they decided to get a gift too and so Janita gave me a nice movie & hand cream and Jeremy decided that he was going to pick out the prettiest flowers for mom and came home with a nice bunch of pink roses, another 3 yellow roses and a balloon for mom. ------------------------------------------------------------------------------------------------------------------- The weather was beautiful on my birthday so we were able to eat outside for the 1st time and I even fed Lorena outside as well. For Lodewyk's birthday we did end up going to the Chinese restaurant around the corner for lunch. Lorena cooperated well and was not fussy at all. It was nice to be out with all of us and a real treat to be able to do this. For those of you in Holland who are reading this I want to let you know that on the tv at the restaurant the soccer game between the Netherlands and Russia was on. We never watch soccer but since it was Holland playing we thought it would be nice to see how good they are. We were disappointed when Russia scored the 1st goal and soon after we left the restaurant. From friends (soccer fan) we later heard that Russia beat Holland 3 to 1. What is the matter with the Dutch team? Lorena eats her solids well but with her solids we also have to try to do a little cup feeding now as it does not look like she will ever take her bottles well. This cup is actually a little medicine cup. I thicken the milk up a little with rice cereal so that it flows a little slower. Have you ever tried cup feeding a 5 month old baby? To be honest this is a frustrating task but in a way it is also pretty funny. Perhaps depending on my mood weather I think it is funny or frustrating. I try holding this little cup to her lips but then she swings her head from left to right and back and forth at 50 miles an hour....well. Half the time I think I am pouring it into her mouth and suddenly her mouth is gone and I am pouring it into the air down onto her bib. Or she sticks her tong into it so good and hard that the whole thing tips and pours over her bib yet again. Cup feeding actually works best when Jeremy is around as he knows how to entertain her and hold her attention so that I can let her drink and she actually holds still because her attention is fixed on Jeremy. Right now I cup feed her 20 ml twice a day. This and the solids we feed need to make up for the one feeding time we dropped with the new schedule. Hopefully she will continue to gain weight on this new schedule. Lorena is gaining about an average of 13 grams a day so not the ideal 20 - 30 grams but she is continuing to gain weight and we are thankful for that. When she was weighed last on the 18th of June she weighed 5.45 kg. Lorena is now 5 months old and she still wears some of her newborn clothing yet. She also still sleeps in her cradle as she is still small enough. Most people who see her in real life and have also seen her pictures tell us that the pictures are deceiving and she actually looks a lot smaller in real life then the pictures show. As for Lorena's development......well, she seems to be fast with everything. At 3 months she started to turn onto her belly and just this month at 4 1/2 months she is starting to crawl a bit. She rolls onto her tummy and manages to move her legs enough to move forward. She also likes to observe and she seems to see everything no matter how little. It is becoming harder with the NG feeds as she turns her head and sees that neat line and of course reaches and grabs it really quick. So we try try to hide it under the sheet now and watch her like a hawk as when she grabs it she could pull the lines apart so it starts to spill out or even pull the NG tube out of her nose. We looked into using a softer NG tube so that we would only have to change it every month. However others recommended agains it as babies grow so much in a month that this tube could leave indents, so in essence her body would grow around it. Also they said her nose would become sore for having it in one side for so long. So we continue to change the NG tube each week and Lorena screams/cries as it is a painful procedure getting that new hose going down into her stomac. Lorena is now also taking medication for acid reflux (kind of heartburn or to high acid in her stomac). At this point we are not sure if she has this but if she does this may be the cause that she does not want to drink her bottles. So for now the medication is being used to see if she will start taking her bottles. She did take one of her bottles completly a few days ago but that was the only one. The experience however of having her drink the whole bottle in 15 minutes was wonderful and gave us a tast of how easy feeding her could be. It made us wish all the harder and pray that this medication would actually work and she would start drinking all her bottles.This would save us about 6 hours a day but I think it is just wishful thinking as so far we have not seen any improvement except for that one time. Lorena takes a little bit from only about 2 bottles per day all the rest she continues to refuse. This month has been a bussy one in more ways as we also had my parents over for a 10 day from Ontario. We were glad they could come and see Lorena for the 1st time and spend some time with our family but it also made it more bussy for us. The 1st weekend they were here we also had Lodewyk's brother and his family from Nova Scotia stay for 2 days on Friday and Saturday. It was nice they came with their camper and we did not have to worry about finding more room for them to sleep. The following Sunday was an other bussy one as after having gone to church in the AM we rushed to eat lunch as an aunt and uncle from Holland came for an afternoon visit. It was nice to see them again after 8 years but when they left we rushed off to the kids piano recital. The Piano recital was really neat this year as all the kids were playing a piece of music that they had composed themselfs. Jeremy wrote a fun piece which he named "Jeremy flipping glasses" and Janita wrote a beautiful piece called "Oceaan sunset". At the end the rewards were given and Jeremy won a chocolat bar. Janita won some candies in a cup but she also won the trophy award for Top Composition. Janita had won the award for the best composition. Now as parents we realize that she not only has a talent for playing piano but also to compose pieces. All in all Lorena is doing well and we thank the Lord each day for this precious little girl who is always so quick and eager to give us her sweet little smiles. She is quick in many ways and just yesterday started to roll over on her mat and lift up her head and look around for quite some time before putting her head back down. She also is often not happy to just sit on your lap but would rather stand up. She is very strong and healthy looking now and we continue to be amazed at how well Lorena has recovered from the omphalocele. Only the NG tube which she is always wearing on her face is a give away that she is not your average healthy baby. Still with the schedule change we are gaining back some more normality in our lives. We are also glad the other kids are off from school as that relaxes things around the house even more. No more bringing and picking them up and no more homework to help out with etc. Instead we have 2 little helpers around the house. Janita loves to take care of her baby sister and we have even been able to go out for some needed stuff for a few hours at a time while Janita babysits. In the next month I also want to wean Lorena off of the breast milk slowly so that I can eventually quit pumping as this really ties us down and before the summer is over we would like to go out for a few days here and there. We will not be going on holidays ( we usually like to go camping) this year as that is to much hassle with the NG feeds for Lorena. So instead we will have a back yard holiday which is fine too as with all the work we did in our backyard over the last years it is a joy to just sit outside and enjoy the plants and flowers. For those of you at Woodgreen Presbeterian, this will be the last time that I am sending the update to the Woodgreen office, who has been forwarding it to all of you. I don't think all of you understood this so if you want to receive any future updates via email then please let me know and I will add your email address to the mailing list. I have one list which I copy and paste into the mail send out so it takes very little time to add your email address. I will still also continue to post it on our website so you can also look it up yourself at the beginning of each month. http://www.telusplanet.net/public/lorejj20/index.htm I am not yet sure as to when I will send out the next update. Perhaps I will take a break until the end of the summer vacation and send out the next update by August 30. However if I get the itch to write again I may send the next one after a month at the end of July. So for those of you who check the website for updates it is best to check at the beginning of each month to see if a new update has been posted. Or if you prefer to be added to the mailing list, it is easier as you will just see the update appear in your mailbox, just let me know. To all of you we want to thank you for your support and interest you have shown/show in Lorena's progress. We want to wish you all a wonderful summer! With Love LRJJL The Brobbel Family Sleeping on big sisters lap Being a happy girl. "Bright Eyes" could be my nickname. Jeremy goofing off. He came to tell us like this and with a big smirk that he would like a spanking. He got the idea from a book. One of the 1st times Lorena ate fruit. Now apple sauce & pear sauce have become her favorites. Jeremy performing the song he composed "Jeremy Flipping Glasses". Janita performing her prize winning composition "Ocean Sunset". Lorena enjoying her solid foods. Having fun in her play seat. Lorena with Opa & Oma Timmermans from Ontario. All the kids enjoying Opa & Oma's visit. Just 4 1/2 months and drinking from a little cup already. Now at a little over 5 months Lorena is drinking quite good from a cup. She now drinks 20 ml (almost full) from this cup 2 x daily. Lorena eating outside for the 1st time, on mommy's birthday. Even all the food on my face can't hide how cute I am! On the pictures with the lovely roses Jeremy bought for mommy's birthday. Just mommy and daddy and me on my daddy's birthday. Why does the stroller have a stick? Lodewyk's invention: take 1 plumbing pipe, 2 electrical ties, 1 tools hook for a peg board and built it onto the stroller. Then hang the bottle on there for the NG feed and we can drive her around the house when she is cranky while being fed. Yes, it works! What moms and dads all do to keep their baby from crying! In the evenings or late afternoon we take Lorena for walks. On our 1st walk we had Lorena face me so that she could cuddle up and get comfortable but she cried for 2 blocks until we turned her around. Little missy wants to see the big wide world. Yeah, I graduated to a bigger bath. Watch out mom & dad, now I can splash even harder! Mommy calls it a warm up time.......before she starts to feed me I get the spoon and start the 1st tastes. Is this thing going to fit in? Our summer vacation destination.........our back yard. Now look at me! I can roll onto my tummy and hold up my head. June 28, 2008 Oops! Mommy & Daddy tell me not to touch my feeding tube but someone has to hold it.