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Every good gift and every perfect gift is from above James 1:17a

Friday March 14, 2008

As I have been doing in previous weeks, I write little bits and pieces of this update spread over the whole week. Especially this week that is the best as there is often so little time between feeds. We have a new concern for Lorena. Her weight gain was not good on Thursday when the home care nurse weighed her. She did not gain any weight over the last week. She weighed 3890 grams and the week before she weighed 3860 grams. So she only gained 4 grams a day (practically nothing) and she needs to gain 30 grams a day. This is not acceptable and now we have one week to get her to gain enough again or else the NG tube has to go back in again next week. We so much don't want to have to use the NG tube again so we have decided to hold off on most of the nursing again. For now I am going to nurse 1 time per day and then top it off with a part bottle. The health care nurse suggested to nurse 3 times a day and then after every nursing get the full bottle into her too. This is easier said then done as a lot of bottles are already a long struggle with her to get them all in, and I can't imagine nursing first and then getting the whole bottle in yet. I just now finished one of her bottle feeds and it took 1 hr 15 minutes of fighting a screaming/crying Lorena. Just a couple of sips at a time and lots of burping in between as she swallows so much air when she is so restless. I also sooth her with her soother in between drinks. She is a smart little girl because she is okay with the soother but as soon as I exchange the soother for the bottle she rejects it and starts to cry. I know I must get the bottles into her no matter how much she does not want to drink it. It is trying a mothers patience to the core and I must say that some times when it is such a struggle I just am in tears along with her. I am so worried for her health and weight knowing she must drink her bottles and yet so helpless as to getting her to drink. It is a relieve again when the bottle is done and Lorena falls asleep in my arms. Then after pumping and all I have just 1 hour until the next feed and always hope the next one will be one of her few (lately) good feeds were she drinks it all up in 15 minutes. We are worried for her and hope and pray that our struggles with getting her to finish her bottles will pay off in seeing enough weight gain to keep the NG feeding tube out.

An other concern is, if I will continue to have enough breast milk for Lorena as I had to quit the medication. I got a sore neck and first thought it was the stress of it all but I usually sleep those off but this neck pain got so bad that I was in agony at night and could not sleep. I could not turn or even move my neck a slight bit anymore and even without moving the pain was horrible. Then a light bulb went on and I thought of checking the side effects of the medication and sure enough it said that you can get muscle stiffness or muscle spasms from this medication that I take to increase the breast milk. Not to mention mood swings and irratebility which I struggled with too. I am pretty sure this is what it is as I did not take it for this past day and my neck is already starting to feel a lot better and I am more relaxed about everything already. The homecare nurse told me that the medication still stays in my body for a few days yet so it may take a few days before my neck is all better. It will also take a few days to find out if the breast milk will go back in quantity or not. In some cases even when the medication is stopped the quantity stays the same but in others the milk decreases. We are hoping and praying that it will stay the same so that Lorena can continue to have all fortified breast milk rather then part formula as she spits up more on the formula.

Sunday March 16, 2008

As I hold Lorena in one arm I am attempting to add a little piece to this update. Lorena is awake a lot of the day now and she really knows how to keep us bussy. Daddy has been giving her some of those difficult feeds as well and though he is always such a patient man even he got to a point where he gave her to me and said "here she is all yours now". It is good that we are able to rotate or take turns when we get frusterated or discouraged. I am so thankful Lodewyk is on parental leave and we can do this together. The first weeks at home went so well and she slept so much but this is sure a difficult faze we are going through now and we hope it will go better soon or else I am afraid the NG feeding tube will go back in. I hardly nurse her anymore (just once a day) as we need to know how much she gets in her. Mommy is sad about this but what ever is best for Lorena needs to be done. In light of having almost lost her I am sure everyone thinks that it is not so bad if you can not nurse etc. We are indeed extremely thankful that we did not loose her and through those difficult times your mind does a shift and almost nothing seems important anymore besides the survival of your child. Yet, when those crucial times passed I did feel very sad for some losses. The loss of not having been able to hold our new born child after birth. For not having been able to relax and heal and enjoy that new born baby. The loss of not having felt her skin to skin. The loss of not having had her nurse and bond for so long and still not. Those are all the moments in the beginning that can not come back and be redone. Still when I think of this I always conclude that God has been good to us and I am thankful we have our little girl to hold close now.

As we were afraid of, I now don't get as much breast milk anymore because of quiting the medication. I only get 2/3 of what she needs and for the other 1/3 we have to add formula. This in turn is causing her to spit up more and bigger amounts again. Which is cause for concern as it is already such a struggle to get the whole bottle (at least 50 ml but we try 60 ml) in and have her gain weight. The good thing about quiting the medication is that my neck is almost back to normal again and I am feeling so much more relaxed, not irritated with everything. The medication made me extremly irritated and I know it was no fun for the rest of the family at all especially for Lodewyk. I have done a lot of apologizing and every one feels like they have there real mommy back again. Lodewyk does not want me to take that medication ever again and I agree. My whole outlook on things is so much better now and I don't get upset over anything anymore. It is amazing how certain medications can have such bad effects on a body but especially on ones moods. This medication also made me extremely tierd (an other of the huge list of side effects) as I feel like I have more energy now. Hopefully Lorena will get used to the added formula and tallorate it better so that she can continue to gain weight and grow.

Tuesday March 18, 2008

This week (Monday evening) Lodewyk went back to his choir practice with the "Master's Singers" men's chorus. He missed his singing so much that he decided it is worth loosing some sleep time, just to be there. So now on Monday evenings he does not get to bed until after 10:00 PM and still gets up at 2:00AM. Good thing Lorena fed well at 2:00AM so he was able to go back to sleep for 2 1/2 hours. In November Lodewyk spend 2 days with the Master's Singers at the down town Jack Singer Hall to record the Master's Singers 2nd CD. This CD "Grace" just came out and it is really nice. The CD's are $15.00 each and only 1000 were made and they are selling fast. So if any of you are interested in ordering one then you can let us know as soon as possible and Lodewyk can bring it home for you. If you live farther away we can try to get it to you via others or else you would need to add the shipping cost. You can send us a check (if you are in Canada) or you can pay from anywhere via Paypal online but we will need to add a small fee to cover the Paypal fees. If you are interested then please email us your order and for the total and the Paypal account address. If you want to hear one of the songs first you can go to the Master's singers website http://www.themasterssingers.org/index.html and you can find the "Holy is He" song on the "Schedule" page. Enjoy!

Today the homecare nurse came again. She weighed Lorena and it was great to see that she is back on track with her weight gain. She now weighs 4030 grams. She gained 28 grams a day again. However when we told her that we need to fight to get the bottles in she told us this is not good. She explained that babies can get an aversion to eating and if we continue this that Lorena may not want to eat at all anymore and this could be problems for years to come. That is enough to give us a good scare. So now what to do? The nurse watched us feed and suggested that as soon as she rejects it to take it out and try later. She also told us we should use a low flow nipple. We tried this low flow nipple for several feeds but now the feeds were taking 2 hours and then she still drank only 40 ml instead of 50 or 60 ml. So we are back to the other nipples again but have decided not to force it anymore. We are at our wits end and have decided that as the nurse suggested that if she does not want to take her bottles that we will once again have to put the NG feeding tube back in. As we can not continue like this. They had warned us that O babies would have trouble feeding but things went so well for us in the beginning and she almost started to feel like a normal healthy baby and so our hopes were high and we thought she would be one of few Omphalocele babies who would not have such feeding troubles. That is not the case however now and we are very discouraged. I know healthy babies can put up a fuss too as we experienced with Janita & Jeremy but that was nothing at all like this, not even close. Please continue to pray for us as we cope with these difficulties of trying to feed Lorena. We are praying that Lorena will cry less, sleep more (as she stays awake most of the day and cries way too much) and will start to feed well once again. Please pray for patience and strength for us as parents for this is so extremely hard on us and the whole family.

Feel free to drop us a line, we could use some encouragements.

Love Lodewyk, Rena, Janita, Jeremy & Lorena


	Concerned About Lorena's Weight
	March 18, 2008 Dear family & Friends, Every good gift and every perfect gift is from above James 1:17a Friday March 14, 2008 As I have been doing in previous weeks, I write little bits and pieces of this update spread over the whole week. Especially this week that is the best as there is often so little time between feeds. We have a new concern for Lorena. Her weight gain was not good on Thursday when the home care nurse weighed her. She did not gain any weight over the last week. She weighed 3890 grams and the week before she weighed 3860 grams. So she only gained 4 grams a day (practically nothing) and she needs to gain 30 grams a day. This is not acceptable and now we have one week to get her to gain enough again or else the NG tube has to go back in again next week. We so much don't want to have to use the NG tube again so we have decided to hold off on most of the nursing again. For now I am going to nurse 1 time per day and then top it off with a part bottle. The health care nurse suggested to nurse 3 times a day and then after every nursing get the full bottle into her too. This is easier said then done as a lot of bottles are already a long struggle with her to get them all in, and I can't imagine nursing first and then getting the whole bottle in yet. I just now finished one of her bottle feeds and it took 1 hr 15 minutes of fighting a screaming/crying Lorena. Just a couple of sips at a time and lots of burping in between as she swallows so much air when she is so restless. I also sooth her with her soother in between drinks. She is a smart little girl because she is okay with the soother but as soon as I exchange the soother for the bottle she rejects it and starts to cry. I know I must get the bottles into her no matter how much she does not want to drink it. It is trying a mothers patience to the core and I must say that some times when it is such a struggle I just am in tears along with her. I am so worried for her health and weight knowing she must drink her bottles and yet so helpless as to getting her to drink. It is a relieve again when the bottle is done and Lorena falls asleep in my arms. Then after pumping and all I have just 1 hour until the next feed and always hope the next one will be one of her few (lately) good feeds were she drinks it all up in 15 minutes. We are worried for her and hope and pray that our struggles with getting her to finish her bottles will pay off in seeing enough weight gain to keep the NG feeding tube out. An other concern is, if I will continue to have enough breast milk for Lorena as I had to quit the medication. I got a sore neck and first thought it was the stress of it all but I usually sleep those off but this neck pain got so bad that I was in agony at night and could not sleep. I could not turn or even move my neck a slight bit anymore and even without moving the pain was horrible. Then a light bulb went on and I thought of checking the side effects of the medication and sure enough it said that you can get muscle stiffness or muscle spasms from this medication that I take to increase the breast milk. Not to mention mood swings and irratebility which I struggled with too. I am pretty sure this is what it is as I did not take it for this past day and my neck is already starting to feel a lot better and I am more relaxed about everything already. The homecare nurse told me that the medication still stays in my body for a few days yet so it may take a few days before my neck is all better. It will also take a few days to find out if the breast milk will go back in quantity or not. In some cases even when the medication is stopped the quantity stays the same but in others the milk decreases. We are hoping and praying that it will stay the same so that Lorena can continue to have all fortified breast milk rather then part formula as she spits up more on the formula. Sunday March 16, 2008 As I hold Lorena in one arm I am attempting to add a little piece to this update. Lorena is awake a lot of the day now and she really knows how to keep us bussy. Daddy has been giving her some of those difficult feeds as well and though he is always such a patient man even he got to a point where he gave her to me and said "here she is all yours now". It is good that we are able to rotate or take turns when we get frusterated or discouraged. I am so thankful Lodewyk is on parental leave and we can do this together. The first weeks at home went so well and she slept so much but this is sure a difficult faze we are going through now and we hope it will go better soon or else I am afraid the NG feeding tube will go back in. I hardly nurse her anymore (just once a day) as we need to know how much she gets in her. Mommy is sad about this but what ever is best for Lorena needs to be done. In light of having almost lost her I am sure everyone thinks that it is not so bad if you can not nurse etc. We are indeed extremely thankful that we did not loose her and through those difficult times your mind does a shift and almost nothing seems important anymore besides the survival of your child. Yet, when those crucial times passed I did feel very sad for some losses. The loss of not having been able to hold our new born child after birth. For not having been able to relax and heal and enjoy that new born baby. The loss of not having felt her skin to skin. The loss of not having had her nurse and bond for so long and still not. Those are all the moments in the beginning that can not come back and be redone. Still when I think of this I always conclude that God has been good to us and I am thankful we have our little girl to hold close now. As we were afraid of, I now don't get as much breast milk anymore because of quiting the medication. I only get 2/3 of what she needs and for the other 1/3 we have to add formula. This in turn is causing her to spit up more and bigger amounts again. Which is cause for concern as it is already such a struggle to get the whole bottle (at least 50 ml but we try 60 ml) in and have her gain weight. The good thing about quiting the medication is that my neck is almost back to normal again and I am feeling so much more relaxed, not irritated with everything. The medication made me extremly irritated and I know it was no fun for the rest of the family at all especially for Lodewyk. I have done a lot of apologizing and every one feels like they have there real mommy back again. Lodewyk does not want me to take that medication ever again and I agree. My whole outlook on things is so much better now and I don't get upset over anything anymore. It is amazing how certain medications can have such bad effects on a body but especially on ones moods. This medication also made me extremely tierd (an other of the huge list of side effects) as I feel like I have more energy now. Hopefully Lorena will get used to the added formula and tallorate it better so that she can continue to gain weight and grow. Tuesday March 18, 2008 This week (Monday evening) Lodewyk went back to his choir practice with the "Master's Singers" men's chorus. He missed his singing so much that he decided it is worth loosing some sleep time, just to be there. So now on Monday evenings he does not get to bed until after 10:00 PM and still gets up at 2:00AM. Good thing Lorena fed well at 2:00AM so he was able to go back to sleep for 2 1/2 hours. In November Lodewyk spend 2 days with the Master's Singers at the down town Jack Singer Hall to record the Master's Singers 2nd CD. This CD "Grace" just came out and it is really nice. The CD's are $15.00 each and only 1000 were made and they are selling fast. So if any of you are interested in ordering one then you can let us know as soon as possible and Lodewyk can bring it home for you. If you live farther away we can try to get it to you via others or else you would need to add the shipping cost. You can send us a check (if you are in Canada) or you can pay from anywhere via Paypal online but we will need to add a small fee to cover the Paypal fees. If you are interested then please email us your order and for the total and the Paypal account address. If you want to hear one of the songs first you can go to the Master's singers website http://www.themasterssingers.org/index.html and you can find the "Holy is He" song on the "Schedule" page. Enjoy! Today the homecare nurse came again. She weighed Lorena and it was great to see that she is back on track with her weight gain. She now weighs 4030 grams. She gained 28 grams a day again. However when we told her that we need to fight to get the bottles in she told us this is not good. She explained that babies can get an aversion to eating and if we continue this that Lorena may not want to eat at all anymore and this could be problems for years to come. That is enough to give us a good scare. So now what to do? The nurse watched us feed and suggested that as soon as she rejects it to take it out and try later. She also told us we should use a low flow nipple. We tried this low flow nipple for several feeds but now the feeds were taking 2 hours and then she still drank only 40 ml instead of 50 or 60 ml. So we are back to the other nipples again but have decided not to force it anymore. We are at our wits end and have decided that as the nurse suggested that if she does not want to take her bottles that we will once again have to put the NG feeding tube back in. As we can not continue like this. They had warned us that O babies would have trouble feeding but things went so well for us in the beginning and she almost started to feel like a normal healthy baby and so our hopes were high and we thought she would be one of few Omphalocele babies who would not have such feeding troubles. That is not the case however now and we are very discouraged. I know healthy babies can put up a fuss too as we experienced with Janita & Jeremy but that was nothing at all like this, not even close. Please continue to pray for us as we cope with these difficulties of trying to feed Lorena. We are praying that Lorena will cry less, sleep more (as she stays awake most of the day and cries way too much) and will start to feed well once again. Please pray for patience and strength for us as parents for this is so extremely hard on us and the whole family. Feel free to drop us a line, we could use some encouragements. Love Lodewyk, Rena, Janita, Jeremy & Lorena Big bright eyes! Lorena having fun with brother Jeremy. The home care nurse checking Lorena over. What a struggle to feed Lorena. This is no fun. Just Tigger and me! Now I lay me down to sleep...... I pray the Lord my soul to keep. Lorena being a happy girl Yes, I look better without the oxygen but I can only have it off for some pictures when it gets changed and when I have a bath. Just checking how good my lungs are! Lorena on the comfy Tigger pillow. Kicking around on the change table. Getting ready for............ .........having a bath. A not so happy Lorena in the play pan. Not even Tigger can cheer me up! We try it all, hold her, rock her, walk with her, put her in the swing, put her in the bouncy chair, put her in the stroller, put her in the craddle, or put her in the playpan. And if that does not work then try them all again. A content Lorena, for the moment. Lorena likes to talk up a storm now, when she is happy.