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As you all know we are now home with Lorena. We have been enjoying these first few days at home with our complete family. I think Lorena already knows that this is her home too. It is wonderful not to have to say good bye to her anymore at night and to have to leave her at the hospital. Now we get to take care of her 24 hours a day. With that however come new challenges as there is much more to feeding her then a healthy breast fed baby. Our kitchen counters are full of bottles, nipples, formulas, etc. Just preparing the milk is a job on its own as we need to first of all mix the breast milk with a small portion of formula in order to fortify it. Then we need to mix up the formula and with every feed we need to mix 25 ml of each together. Besides this I need to pump every 3 hours and wash all that equipment. Then we need to sterilize the bottles and pumping equipment every day. Today I was able to pick up a medication to help me get more breast milk, so now we hope that I may be able to get enough breast milk for Lorena in a few days. This is not only great for her health but it will also be easier to prepare the milk then as we would only need to make the fortified breastmilk then.

The nights are hard and it is hard to get enough sleep. Especially the 1st night home with her was rough. Lorena takes about 1 hour to feed in total and I was doing this and then after that 20 min to pump and clean the stuff etc. All in all it is to hard to get just an hour of sleep here and there. So now we have found a better way for the nights. Lodewyk feeds Lorena while I pump. When he is done feeding then I take the time to burp her which seems to take her a while and in the mean time Lodewyk cleans the pumping materials. This way we both get approx. 2 hours of sleep between feeds. The other night we only got this 2 hours of sleep 2 times so last night we decided to start early and everyone went to bed after Lorena's 8:30 feed. The problem was that Lorena decided it was time for a fussy time and so mom & dad still did not get those extra 2 hours. Lodewyk gets up around 6:15 AM to bring Janita to the bus and then shortly after to bring Jeremy to school at 8:20. This means that he is actually getting less sleep then me as I have been able to sleep an extra 2 hours in the morning. So everyday we plan to take some nap time together but so far the home visits have not allowed for this to happen.

On Tuesday the people came out to set up the oxygen machine for Lorena. On Wednesday the health nurse came and we went over a list of stuff with her and on Thursday the lady from "home care" came to help us with placing the new NG tube on Lorena. She stayed a total of 2 hours. Each of these appointments require a lot of paper work so each time a big chunk of our day (possible nap time) was taken for these appointments. So tonight I send Lodewyk to the basement to sleep in the spare bedroom from 8:30 to 11:30 PM while I hold down the fort. This way Lodewyk can get his energy back and then sleep the 2 hour stretches through the night. Tomorrow morning it will be early rise (6:00 AM) for us as it will take some doing to get ready for our 9:00 AM appointment for the parent teacher interview at Jeremy's school. Lodewyk was joking as we tried to quiet Lorena last night, he said, well lets pull out all the tools of the trade. We tried her in her cradle, then in her swing, in the stroller and then in her viberrator seat and this seemed to quit her for 30 minutes and then it was back to holding her again. So our struggle now is to find some sort of routine which we can maintain and get just enough sleep to continue to function. I think this will take a few days to figure out. We are sure looking forward to my sister coming out to help us for a time. She is hoping to come next Monday evening. In the mean time we are so thankful for a good friend coming out to clean our house for us on Wednesday, this gave us renewed strength as when you live in a mess, that fact alone wears you down.

Lorena is feeding well, she is taking almost all the bottles with only little tiny bits having to be put in through the NG tube and then only a few times a day. Today we replaced her old NG tube again and I must say that doing this still makes me nervous every time. Lorena does not spit up as much anymore but so far had 1 big spit up each day. She is slowly gaining weight, when the health nurse came to weigh her yesterday she was 7 pounds 3 oz. Lorena sleeps almost all the time except her fussy time at night. We usually have to wake her to feed. It is good that she sleeps so much as she still is healing. We need to dress her foot wound 2 times a day and we were told today that it will be several months before this deep wound is all healed.

We have discovered that with the oxygen tube hanging from the back of her neck that clothing that open and close on the front or back work the best. As any clothing that would need to go over her head causes the hose to sit along her back and laying on it would be uncomfortable for her. This really is to bad as I have some cute clothing that do not open on the front or back. Oh, well this is just a small inconvience compared to what we have all been through.

All in all we are very happy that things are going so well with Lorena at this time. The whole family is also more relaxed now that we are all home most of the time. We are glad for the oxygen machine as this gives us more hose then the oxygen tank. With a 50 ft hose we can now walk around the house with her and change her in her bedroom or put her in her cradle beside our bed or have her down stairs with us during the day. Lorena has come such a long ways and it finally feels like our baby is actually all ours as before she seemed to belong partly to the medical world with everyone else making all the decisions for her/us. I felt so helpless not even being able to hold her every day, all those days in ICU but now we get to pick her up and cuddle her as much as we want....what a blessing.

Still we need to guard that Lorena does not get any colds or anything like that as this could result in a big set back for her because of her situation. But for now we are enjoying everyday with her and are glad that at least all the appointments so far have been in our house because soon we will need to go for all the different appointments at the children's hospital and believe me we have a whole collection of them already on our calendar.

As I did not get this letter send out yesterday, I will send it out today. Today things went well. We took Lorena along to the interview at Jeremy's school and the teachers enjoyed seeing Lorena. We stayed a little while so that Jeremy could do the fun activities in the gym as well. We found that last nights solution to the lack of sleep problem worked well. So I think this will be our new routine for a while. Lodewyk sleeps 4 hours in the evening until midnight and then I go to bed and he takes care of feeding Lorena through the night at 12 and 3 and 6 AM. So that I only have to pump at night and can get some more sleep.

Today Lorena started to talk to us, well baby noises/talk but very pleasant. She seems to wait to do this until we wake her up and put her on the change table. She also waits to fill that diaper often in the middle of the diaper change so we have learned to have her awake on the change table for 5 to 10 minutes so that she can fill that old diaper rather then the new one. All in all we get to discover what works for her and really enjoy her at last. Often I still get overwhelmed when I think of how we almost lost her and then the sheer joy of knowing we still have our little girl.


	Lorena's First Days Home
	February 8, 2008 Dear People, Thursday, Feb. 8 As you all know we are now home with Lorena. We have been enjoying these first few days at home with our complete family. I think Lorena already knows that this is her home too. It is wonderful not to have to say good bye to her anymore at night and to have to leave her at the hospital. Now we get to take care of her 24 hours a day. With that however come new challenges as there is much more to feeding her then a healthy breast fed baby. Our kitchen counters are full of bottles, nipples, formulas, etc. Just preparing the milk is a job on its own as we need to first of all mix the breast milk with a small portion of formula in order to fortify it. Then we need to mix up the formula and with every feed we need to mix 25 ml of each together. Besides this I need to pump every 3 hours and wash all that equipment. Then we need to sterilize the bottles and pumping equipment every day. Today I was able to pick up a medication to help me get more breast milk, so now we hope that I may be able to get enough breast milk for Lorena in a few days. This is not only great for her health but it will also be easier to prepare the milk then as we would only need to make the fortified breastmilk then. The nights are hard and it is hard to get enough sleep. Especially the 1st night home with her was rough. Lorena takes about 1 hour to feed in total and I was doing this and then after that 20 min to pump and clean the stuff etc. All in all it is to hard to get just an hour of sleep here and there. So now we have found a better way for the nights. Lodewyk feeds Lorena while I pump. When he is done feeding then I take the time to burp her which seems to take her a while and in the mean time Lodewyk cleans the pumping materials. This way we both get approx. 2 hours of sleep between feeds. The other night we only got this 2 hours of sleep 2 times so last night we decided to start early and everyone went to bed after Lorena's 8:30 feed. The problem was that Lorena decided it was time for a fussy time and so mom & dad still did not get those extra 2 hours. Lodewyk gets up around 6:15 AM to bring Janita to the bus and then shortly after to bring Jeremy to school at 8:20. This means that he is actually getting less sleep then me as I have been able to sleep an extra 2 hours in the morning. So everyday we plan to take some nap time together but so far the home visits have not allowed for this to happen. On Tuesday the people came out to set up the oxygen machine for Lorena. On Wednesday the health nurse came and we went over a list of stuff with her and on Thursday the lady from "home care" came to help us with placing the new NG tube on Lorena. She stayed a total of 2 hours. Each of these appointments require a lot of paper work so each time a big chunk of our day (possible nap time) was taken for these appointments. So tonight I send Lodewyk to the basement to sleep in the spare bedroom from 8:30 to 11:30 PM while I hold down the fort. This way Lodewyk can get his energy back and then sleep the 2 hour stretches through the night. Tomorrow morning it will be early rise (6:00 AM) for us as it will take some doing to get ready for our 9:00 AM appointment for the parent teacher interview at Jeremy's school. Lodewyk was joking as we tried to quiet Lorena last night, he said, well lets pull out all the tools of the trade. We tried her in her cradle, then in her swing, in the stroller and then in her viberrator seat and this seemed to quit her for 30 minutes and then it was back to holding her again. So our struggle now is to find some sort of routine which we can maintain and get just enough sleep to continue to function. I think this will take a few days to figure out. We are sure looking forward to my sister coming out to help us for a time. She is hoping to come next Monday evening. In the mean time we are so thankful for a good friend coming out to clean our house for us on Wednesday, this gave us renewed strength as when you live in a mess, that fact alone wears you down. Lorena is feeding well, she is taking almost all the bottles with only little tiny bits having to be put in through the NG tube and then only a few times a day. Today we replaced her old NG tube again and I must say that doing this still makes me nervous every time. Lorena does not spit up as much anymore but so far had 1 big spit up each day. She is slowly gaining weight, when the health nurse came to weigh her yesterday she was 7 pounds 3 oz. Lorena sleeps almost all the time except her fussy time at night. We usually have to wake her to feed. It is good that she sleeps so much as she still is healing. We need to dress her foot wound 2 times a day and we were told today that it will be several months before this deep wound is all healed. We have discovered that with the oxygen tube hanging from the back of her neck that clothing that open and close on the front or back work the best. As any clothing that would need to go over her head causes the hose to sit along her back and laying on it would be uncomfortable for her. This really is to bad as I have some cute clothing that do not open on the front or back. Oh, well this is just a small inconvience compared to what we have all been through. All in all we are very happy that things are going so well with Lorena at this time. The whole family is also more relaxed now that we are all home most of the time. We are glad for the oxygen machine as this gives us more hose then the oxygen tank. With a 50 ft hose we can now walk around the house with her and change her in her bedroom or put her in her cradle beside our bed or have her down stairs with us during the day. Lorena has come such a long ways and it finally feels like our baby is actually all ours as before she seemed to belong partly to the medical world with everyone else making all the decisions for her/us. I felt so helpless not even being able to hold her every day, all those days in ICU but now we get to pick her up and cuddle her as much as we want....what a blessing. Still we need to guard that Lorena does not get any colds or anything like that as this could result in a big set back for her because of her situation. But for now we are enjoying everyday with her and are glad that at least all the appointments so far have been in our house because soon we will need to go for all the different appointments at the children's hospital and believe me we have a whole collection of them already on our calendar. Friday Feb 9 As I did not get this letter send out yesterday, I will send it out today. Today things went well. We took Lorena along to the interview at Jeremy's school and the teachers enjoyed seeing Lorena. We stayed a little while so that Jeremy could do the fun activities in the gym as well. We found that last nights solution to the lack of sleep problem worked well. So I think this will be our new routine for a while. Lodewyk sleeps 4 hours in the evening until midnight and then I go to bed and he takes care of feeding Lorena through the night at 12 and 3 and 6 AM. So that I only have to pump at night and can get some more sleep. It still seems like we are also trying to catch up with some sleep yet from the extremely exhausted 1st 3 weeks we had. However we both agreed that today seemed like the 1st relaxing and not so tierd day in a long time. So we are confident that from here on it will all be getting better. Today Lorena started to talk to us, well baby noises/talk but very pleasant. She seems to wait to do this until we wake her up and put her on the change table. She also waits to fill that diaper often in the middle of the diaper change so we have learned to have her awake on the change table for 5 to 10 minutes so that she can fill that old diaper rather then the new one. All in all we get to discover what works for her and really enjoy her at last. Often I still get overwhelmed when I think of how we almost lost her and then the sheer joy of knowing we still have our little girl. As things get busier now that we are at home, we will not be sending to many updates anymore, just maybe every now and then for the fun of it. Love Lodewyk, Rena, Janita, Jeremy and Lorena Lorena being weighed, oops she made a puddle on the scale. Lorena with the health nurse. At home on the change table. Time for a stretch. We always wrap her in a blanket with her hands down so that she can not pull the oxygen hose or NG tube off. So on the change table is her stretch time. We just can't get enough of those big bright eyes. Lorena's oxygen machine with 50 feet of hose and a supply of oxygen tanks. A big one for back up incase we loose power and the little once for outings. It comes with a bag to carry on our shoulder. So at the end of all that hose, were ever it leads to, you will always find Lorena. We were told to count on having Lorena on oxygen for 4 to 6 months. This unfortunately is our own expense of $80.00 per month but she is worth every penny of it and lots more. Jeremy showing off his baby sister to Mrs. Melnyk, his teacher. Look mom, I can climb this thing no problem. Jeremy doing some fun activities in the gym on Friday.