Untitled 3

Lorena has been doing very well in this past week. She gained more weighed then ever before at her new record of 27 1/2 grams per day. When the health nurse weighed her on Wednesday April 16th she weighed 4400 grams. We are thankful for this. It has been hard as a mom, as I so much wanted to be able to breastfeed, that there has not been much opportunity for this. As she quit nursing 2 weeks ago and I continued to try until we decided to give it a rest for a while again. So now I have been back to pumping everything again for the last week. Yet we were thankful that when we introduced the bottle again instead, that she is taking these again. Lorena drinks at least half of most bottles and sometimes she drinks them all the way. This makes such a huge difference for us, time wise. As she can drink mostly in about 15 minutes or less and then we only have the put the left over through the feeding tube. When it is a small amount we can just syringe it into her feeding tube instead of using the drip. So it has been a very nice treat for us to have more time in between feeds to do other things.

When the health nurse came she brought her student nurse again like the last 4 times. This time again she brought the respiratory person along too. She measured Lorena's oxygen level now that she was off of the oxygen for a week. Lorena was crying and even with all her crying her levels were great. We are thankful for this.

This week we received pictures from Dr. Eccles, the lady who performed the surgery for Lorena. It caused us to reflect yet again on how much of a miracle it is that we still have our little girl today. On these pictures Lorena's intestines are so clearly visible through the membrane on the omphalocele. Though I was the first to touch Lorena as her head started to come out during birth, only dad got to have a good look at her when she was born and seen the omphalocele close up when he took those first pictures. Only as they carried her away could I see a bit of the omphalocele. One of the hardest things after having given birth is not to be able to hold your baby. Instead of getting to hold my baby after birth the nurse was smart and decided to keep me occupied with the placenta. She brought the placenta to me in a dish and was showing me and explaining to me all about it and let me touch it and all. I was very interested to see this all, but when I look back, I have to laugh at how clever this was of the nurse as she kept my mind off of wanting to hold my baby, for those moments. It was not until I went to ICU shortly after, that I got to have a good look at Lorena but then her omphalocele was bandaged up most of the time. This was probably a good thing as it was already so hard to handle. The bandages were put on tight and even by doing this for about 20 hours it had helped to push it all back inside a bit, as you can see on the pictures, Dr. Eccles took, the omphalocele does not look as high as the 1st pictures Lodewyk took. After surgery Dr. Eccles also showed us the picture on her camera of what they found inside. A picture of her bowels with a kind of a T where it also would go to her navel. I have decided not to add all pictures to this update for those who may have a weak stomach and would rather not see this. However for those of you who would like to see these pictures, I have them all posted on my website and you can find them here:

Today, Wednesday April 23 we spend over 4 hours at the hospital again with Lorena. We always spend about 3 hours for our respiratory appointments. With nurses, doctors, dieticians, etc all taking turns with us. Lorena got an other RSV shot again and depending on how long the cold season continues this may be the last one or she may need 1 more in May. We spend a lot of time with 2 dieticians who showed us a different way to feed Lorena as Lorena is still struggling with the drinking and coordinating the swallowing with the sucking. We are going to try to bottle feed her in a laying position now with the hope that it will go better for her and she may start drinking her complete bottles. It would be so nice if we can get rid of the NG tube. Today Lorena's weight was 4540 grams and so her weight gain over this last week was only 14 grams per day again. That is why the dietician decided we need to fortify the milk even more to 30 calories instead of 27 calories so that she will hopefully grow more. As most babies Lorena's age take more milk but when we try with Lorena to give her more she starts to throw up. So we continue to struggle with trying to get Lorena feeding and growing okay.

Today we also had an x-ray taken of Lorena's lung to see how much scar tissue is on the lung because of the IV leak. They also told us there is definitely some scar tissue from the respirator she was on. We will hear about these results in our next appointment with the respiratory clinic in about 4 weeks.

Next week we finally get to speak to the cardiology Doctor about Lorena's heart and hope to get some questions answered about Lorena's heart condition. We continue to hope and pray that the hole in her heart will heal and grow closed so that she will not need surgery.


	Lorena's Surgery Pictures
	April 23, 2008 Dear Family and friends, Give ear to my words, O LORD, consider my meditation. Hearken unto the voice of my cry, my King, and my God: for unto thee will I pray. My voice shalt thou hear in the morning, O LORD; in the morning will I direct my prayer unto thee, and will look up. Psalm 5:1-3 Each morning I wake up thanking the Lord for the wonderful gift of children. We have come to treasure them more then ever before. We have always been thankful for our kids but it was not until we almost lost Lorena that we realized even more deeply what a wonderful God we have who has blessed us so richly with these children. Lorena has been doing very well in this past week. She gained more weighed then ever before at her new record of 27 1/2 grams per day. When the health nurse weighed her on Wednesday April 16th she weighed 4400 grams. We are thankful for this. It has been hard as a mom, as I so much wanted to be able to breastfeed, that there has not been much opportunity for this. As she quit nursing 2 weeks ago and I continued to try until we decided to give it a rest for a while again. So now I have been back to pumping everything again for the last week. Yet we were thankful that when we introduced the bottle again instead, that she is taking these again. Lorena drinks at least half of most bottles and sometimes she drinks them all the way. This makes such a huge difference for us, time wise. As she can drink mostly in about 15 minutes or less and then we only have the put the left over through the feeding tube. When it is a small amount we can just syringe it into her feeding tube instead of using the drip. So it has been a very nice treat for us to have more time in between feeds to do other things. When the health nurse came she brought her student nurse again like the last 4 times. This time again she brought the respiratory person along too. She measured Lorena's oxygen level now that she was off of the oxygen for a week. Lorena was crying and even with all her crying her levels were great. We are thankful for this. This week we received pictures from Dr. Eccles, the lady who performed the surgery for Lorena. It caused us to reflect yet again on how much of a miracle it is that we still have our little girl today. On these pictures Lorena's intestines are so clearly visible through the membrane on the omphalocele. Though I was the first to touch Lorena as her head started to come out during birth, only dad got to have a good look at her when she was born and seen the omphalocele close up when he took those first pictures. Only as they carried her away could I see a bit of the omphalocele. One of the hardest things after having given birth is not to be able to hold your baby. Instead of getting to hold my baby after birth the nurse was smart and decided to keep me occupied with the placenta. She brought the placenta to me in a dish and was showing me and explaining to me all about it and let me touch it and all. I was very interested to see this all, but when I look back, I have to laugh at how clever this was of the nurse as she kept my mind off of wanting to hold my baby, for those moments. It was not until I went to ICU shortly after, that I got to have a good look at Lorena but then her omphalocele was bandaged up most of the time. This was probably a good thing as it was already so hard to handle. The bandages were put on tight and even by doing this for about 20 hours it had helped to push it all back inside a bit, as you can see on the pictures, Dr. Eccles took, the omphalocele does not look as high as the 1st pictures Lodewyk took. After surgery Dr. Eccles also showed us the picture on her camera of what they found inside. A picture of her bowels with a kind of a T where it also would go to her navel. I have decided not to add all pictures to this update for those who may have a weak stomach and would rather not see this. However for those of you who would like to see these pictures, I have them all posted on my website and you can find them here: http://www.telusplanet.net/public/lorejj20/lorenas-surgery.htm Today, Wednesday April 23 we spend over 4 hours at the hospital again with Lorena. We always spend about 3 hours for our respiratory appointments. With nurses, doctors, dieticians, etc all taking turns with us. Lorena got an other RSV shot again and depending on how long the cold season continues this may be the last one or she may need 1 more in May. We spend a lot of time with 2 dieticians who showed us a different way to feed Lorena as Lorena is still struggling with the drinking and coordinating the swallowing with the sucking. We are going to try to bottle feed her in a laying position now with the hope that it will go better for her and she may start drinking her complete bottles. It would be so nice if we can get rid of the NG tube. Today Lorena's weight was 4540 grams and so her weight gain over this last week was only 14 grams per day again. That is why the dietician decided we need to fortify the milk even more to 30 calories instead of 27 calories so that she will hopefully grow more. As most babies Lorena's age take more milk but when we try with Lorena to give her more she starts to throw up. So we continue to struggle with trying to get Lorena feeding and growing okay. Today we also had an x-ray taken of Lorena's lung to see how much scar tissue is on the lung because of the IV leak. They also told us there is definitely some scar tissue from the respirator she was on. We will hear about these results in our next appointment with the respiratory clinic in about 4 weeks. Next week we finally get to speak to the cardiology Doctor about Lorena's heart and hope to get some questions answered about Lorena's heart condition. We continue to hope and pray that the hole in her heart will heal and grow closed so that she will not need surgery. We thank you all for your continued prayers. Lodewyk, Rena, Janita, Jeremy & Lorena January 17 - Lorena on the surgery table. Ready for the surgery. After 3 1/2 hours the surgery was completed. April 16 - The student nurse weighing Lorena while the respiratory person is looking on. The respiratory person monitoring Lorena's oxygen level. It was great! Ready to dry off after a nice bath. On the day we changed the NG tube. It feels great mom, without that NG tube in for a little while! Yip, I am ready for spring in my colorful outfit. Just watching mom syringe the last milk into my NG tube. Lorena loosing her soother as she sleeps. Hey what a cute doggie. Jeremy introduced his new Webkins lil dalmation dog, which he named Pete, to Lorena. Hi Pete, my name is Lorena and we can become good friends and.................blah, blah, blah. April 23 - Lorena getting her head measured at the respiratory clinic. A new way to feed Lorena. Laying side ways and pulling out the bottle every 6 sips to help her to pace herself with the drinking. We hope this will help her to drink more from each bottle and eventually all. Lorena is pretty relaxed drinking in this laying position.