Dear Family & Friends,

 

It was exactly 2 weeks ago yesterday that the iv leaked behind Lorena's lung and after 1 1/2 hours of horrible breathing her lung collapsed. We will never forget this as we thought that we were going to loose her. We will also not forget the pain she was in when they took away the morphine to prepare her to start breathing on her own again rather then the machine doing the breathing for her. She was in so much pain that not only did she pinch my finger really hard she was holding with her little hand but she was tossing her head back and forth as if she wanted to shake off the pain and agony. Now just 2 weeks later Lorena was allowed to come home from the hospital lat last night. We thank our Lord for this wonderful blessing. Still when I look back over the past 3 weeks, Lorena has been through so much and much pain, yet through it all she has cried very little but has seemed so content to take what ever came her way. I know that she was carried by prayers and that our Saviour was holding her in His loving hands every step of the way. I really have no other explanation why else she has not been crying up a storm through it all like a lot of the babies we heard in the other hospital rooms.

 

Yesterday was an other extremely exhausting day as every doctor and so on had to come to see us before we were able to leave the hospital.  We finally got home with Lorena at 10:10 PM and I was to wiped out to write an update and also now had the Lorena here to be cared for which was unlike other evenings. Yesterday we were made aware that Lorena would go home with an oxygen tank and we were warned that she will probably need this oxygen for 4 to 6 months. She needs this as her lung is still underdeveloped, it was not grown big enough because the liver was in the way as well wit her heart condition the heart would need to work much harder to pump the blood through. So the oxygen will help her in these aspects. This did however mean training on how to use the oxygen pumps and she will be attached to this pump all the time. We have a small pump for when we go places and a larger pump for at home but this will become the back up pump as today they are going to install an oxygen machine in our home for Lorena.

 

We also got a visit from respitory care and this lady came to administer the 1st of a series of shoots to give Lorena immunity against colds. This will not mean that she can not get any colds but it will help her in case she does get a cold and may prefent some. Lorena is in such condition that she can not afford to get a cold as this may put her in danger once again.  We are thankful for the Alberta government who is paying for these series of shots. These shots cost $1500.00 per shot for a total of $8000.00 for the series of shots. We were also carefully instucted that we should avoid people with colds or places were there are a lot of people.  We were also told that any one who touches Lorena must wash their hands....hand washing is so impotant to avoid spreading colds etc. to her. It was strongly suggested that we would not take her out to much. We intend to protect her as much as possible from getting a cold or anything like that and so we probably will not be able to take her out to much.

 

Having said that, on the other hand I was quite overwhelmed with the list of more then 10 appointments we were send home with to keep in the near future. Most of these are at the children's hospital and we were told to be prepared to spend many more days or part days at the hospital for these appointments.

 

Yesterday Lorena got more x-rays done before being releesed and all was okay to release her. The unltra sound for her tail bone was not yet done however and we will have to come in for that on a seperate appointment. so we do not yet know the results of that.

 

Tomorrow a public health nurse is coming by and she will also keep an eye on Lorena as well as all those doctors. She is under control for her heart, lungs, respiratory, oxygen, her operation, the iv burn etc. etc.

 

On Thursday the home care service people are coming to assist us with the replacing of the NG tube as we do it at home for the 1st time. We also need to dress her iv burn wound on her foot 2 times a day.

 

This first night home was extremely exhausting. As now I am not only pumping but we also need to feed Lorena which can easily take an hour for just the feeding. So there is just a bit of sleep time between feeds and pumping and even this is a very restless interrupted sleep because I am so guarding and any peep Lorena makes, I am wide awake again. Lodewyk is awesome and is helping me with every feed so he too is not getting much for sleep. Every time Lorena spits up we need to change her again and all these little extra things add up and take time. I know we are going to have some very exhausting weeks ahead of us as just the care for Lorena alone is taking so much more time then a healthy baby would. We pray for strength to be able to continue to do all this for Lorena. We were also disappointed to hear from my sister that she is struggling with a bad cold/strep throat and therefore both us and her have decided that she will not be able to come and help us just yet. We do not want to expose Lorena to this. However we are already dealing with Janita having a cold and I am afraid I feel that sore throat coming on too. Please pray that Lorena will not get this cold. We are extra cautious with washing hands and I am making sure she is getting my fresh breast milk starting today so that she can get the antibodies through my milk hopefully.

 

Please continue to pray for Lorena as she is still on the road to recovery and she is yet so vulnerable. Pray that she will not get any colds or flues as her little body is so weak yet. Please pray for health and strength for us to continue to take care of her.

 

I am not sure how the coming days are going to go so I have decided to let you all know that I may not send daily updates any more but I will only send them when I will feel up to it. I hope you all understand as now we have Lorena to care for 24 hours a day, we are so much more tiered yet then the hospital days.

 

Thank you for your continued prayers.

 

Love Lodewyk, Rena, Janita, Jeremy and Lorena