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Lorena's 1st cold, flue & airplane ride

November 1, 2008

Dear family & Friends,

September

As September is drawing to a close I decided to write about this month instead of waiting to the end of October as a lot happens in 2 months and it seems that my memory is not that good. This month has brought us a lot of changes and new challenges. Our Lorena knows how to keep us on our toes. Just when we think we have a bit of a routine going and we have the hang of things everything changes yet again.

Lorena is now 8 1/2 months old already and we have made no progress yet getting her off of the NG tube feedings. Mom is getting more comfortable with the idea that Lorena will most likely need a G-tube in the future. September seems to be the month for Lorena to try out a lot of new things in life. Lorena has been testing her vocal cords in different ways but at the beginning of this month she has started to say mama & dada. Of course we were all thrilled to hear this. Lorena also started to sit up on her own this month and after lots of practice she sits quite good on her own and even manages to pull her self up in her stroller. When she turned 8 months we knew it was time to let her sleep in a crib instead of her cradle when she started to throw her one foot over the side of the cradle. At her 14 1/2 pounds she still fits in the cradle fine but our little missy was no longer save in there anymore. So we are selling the cradle, do you know anyone who needs a cradle? She also outgrew the baby swing and so we sold it last week. Our house is full of baby stuff now so as she out grows it we sell everything to gain back some space and some extra cash which will help to cover the parking fees at the hospital each time we go there.

While it is cute to see how well she can sit up and how fast she can roll over in her crib now, this too has brought more challenges for us. We used to be able to feed Lorena through the NG tube and walk away for little bits here and there, just having to watch out for her grabbing it and the steady drip to make sure it would not go to fast or to slow. We had found a bit of a solution to her grabbing the NG tube by tying a sheet around it and the side of the stroller and continually trying to hide it away from her behind her. Now with her rolling over so swiftly there is an added danger of her being able to strangle herself on this very feeding tube which is keeping her alive and growing. Unless she is sleeping and we have the monitor near us we do not dare to leave her alone while being fed anymore. She gave us a scare this month when she woke up while we were feeding her and we heard an unusual muffled sound from her through the monitor. We went to look right away and found the cord around her neck. That is why we always have the monitor were ever we are and we are especially on guard when we feed her in her crib, forever running up and down the stairs to check on her. Most feedings during the day still happen in her stroller, only now she sits up and tends to get bored faster. So we keep on giving her new things to hold and play with to entertain her while being fed. Lorena likes to move around and discover this world and at this age you can't tell her to sit still either. Still Lorena has managed to disconnect the 2 tubes while being fed a few times even with all our precautions and has pulled the tube out of her nose and stomach on different occasions too. An other thing we learned to do was to tape the little cap on her tube closed in between feeds as when she sees the little end she opens it up and her stomach runs empty and all over. Lorena is attempting to crawl but so far she crawls more backwards then forwards.

We have been steadily trying to get her to take more volume of milk as Lorena is actually not getting enough fluids for her size now. This however is difficult as when it is to much we give her, she vomits it all back out again. We were able to work her up to taking 110 ml per feed and she was growing steadily and we were a little more relaxed at seeing her progress in growth. Then this past week we were all worried again when she got her 1st cold. She was miserable and throwing up at least 1 bottle a day, things got worse as she got this very deep cough. It sounded so bad last Tuesday morning and we were worried for her lungs that we decided to go to emergency at the Alberta children's hospital. At the Children's hospital we were put at ease when they told us her lungs are still clear and we were send home with saline drops for her. Then a few days later Lorena started to throw up every bottle. She was vomiting all over were ever we had her. In her bed all over her stroller etc. Each bottle she vomited all out and this continued for 30 hours and still did not let up. So the same week we went into emergency again at the children's hospital. We were very worried that something was wrong inside of her. At emergency they thought it might be a flue and so we were told to stop feeding the milk and give her Electrolite instead. Her flue lasted 2 days and we fed her Electrolite for a few days and then slowly reintroduced the milk again. We were sure it was a flue as a few days later both Janita and I were in bed for 2 days with that same awful flue. Sleeping was impossible because we kept vomiting every 30 minutes or so. Then the 2nd day into our flue Jeremy also got it and then Lodewyk did too. Just when Lodewyk was looking forward to going on a road trip to Medicine Hat to sing with the Master's Singers.

October

This month Lorena has had lots of practice sitting up and crawling. Still she crawls backwards but she moves faster now. She also loves to walk when we hold her or perhaps I should say run! Lorena & mom took a trip to Ontario as a surprise for her Opa & Oma. We were able to be there for the open house to celebrate Opa Timmermans' 80th Birthday and their 53rd Anniversary. They were very pleasantly surprised that we came out. Lorena did great on the airplane. The stewardesses told me to hold Lorena in the burp position on my shoulder for take off...........well............little missy did not want to have her head into my shoulder when there was so much to see out of that little airplane window. She was far to curious and needed to see out the window as we went up and came down for the landing. We stayed in Ontario a week and it was good to see family & friends again. It was very tiring however for both Lorena and I. As at home Lodewyk still helps with a lot of the feeds and we don't go out so much. In Ontario my sister Trudy did help with some of her feeds so that I could get some sleep in. Lorena's feeds still take over 7 hours a day to do and her 1st feed is around 7 and her last around midnight. We returned from Ontario late Saturday night on the 25th and decided we needed to rest up on Sunday as we have a busy week again this last week of October.

On Monday Oct. 27th we had an appointment at the children's hospital. After bringing Janita to the school bus and then Jeremy to school we left the house at 9 am and returned close to 2 pm from that appointment. Then with picking up the kids and running them back and fort to piano we were finally all back home by 6 pm to have a quick supper before Lodewyk left for choir practice. We were not fond to hear that for this appointment they had to put radio active material in her stomach. This was a test to see if she digests well or in other words if her stomach empties out in good time. On Tuesday Dr. Eccles called us with the results. Lorena empties out her stomach well so this is not the problem for her not eating well. We were glad to hear that she has no problem with her digestion but still no solution has been found to her eating problem.

On Wednesday Oct. 29 Lorena had an other appointment with Cardiology. An other ultrasound was made to check the hole in her heart and an other ECG test was done. When we spoke to the cardiologist we were disappointed to hear that the hole has not gotten any smaller yet. The cardiologist had expected it to be smaller but that is not the case. Still he told us that there is still a chance that it may grow closed more and they really would need to wait until she is 2 years old to know better what will happen. Still now he started to explain to us the different procedures of heart surgery. It seems that the possibility of Lorena needing heart surgery is still a very real one. It freightens me to think about it so I try to bring all my worries to the Lord and trust that He will continue to take care of our little girl. The good thing is that her heart is not growing bigger on one side from the strain of working harder because of the hole because if it starts to grow larger on one side then a surgery is necessary right away. Now we can continue to wait and there is at least a possibility that the hole will grow smaller. It is our prayer that our little girl will not need a heart surgery but that the hole will grow closed instead.

On Thursday Oct. 30 we went in with Lorena for an other check up with Dr. Eccless who operated her. It seems the scar and muscle tissue underneath is holding well and no new hernia is forming. We are thankful for this. We discussed again the option for a G-tube as both Lodewyk and I were warming up to this idea and ready to go this route if it is in Lorena's best interest. However after talking to Dr. Eccles we came away discouraged and rethinking this option. Dr. Eccles her self recommended that we would be better off to continue the NG tube for as long as possible. Dr. Eccles told us that this operation to insert a G tube would be much more difficult then with a healthier child. It is much more difficult with Lorena because of her omphalocele. In most cases the stomach is already against the abdominal wall but Dr. Eccles told us that in Lorena's case there could be intestines in between the stomach and the abdominal wall. If this is the case they need to pull her stomach forward and move the intestines out of the way, this is not without risk. Also she was telling us that Lorena would end up getting more acid reflex or in other words she would start spitting up a lot with a G tube. This has discouraged us both enough as we know from our past experiences with Lorena that spitting up is a lot of worry and work on our part. The doctor agreed with us that it would be better for us to continue to re-tape her tube on her face etc to keep it from being pulled out then to have to clean up spit up all the time. We know that Lorena is more exposed to nasal infections because of the NG tube but that to seems to be a better choice for the risks we take placing a G-tube. Dr. Eccles told us that with a G-tube the spit ups could become so bad that they would have to remove the G-tube then but even then spit ups could continue as then they would have moved her stomach forward and it is not easy to move back again. So at this point we have decided that there are to many risks and that the G-tube may make things worse rather then be a help to Lorena.

To most people Lorena seems so wonderfully healthy and indeed we are so thankful for how far she has come, still there are 2 difficulties that gives us cause to worry. We continue to struggle with getting Lorena to eat properly. For us as a family her feeding time takes so much out of us as it is still over 7 hours a day of work. My sister Trudy was a wonderful help with feeding Lorena while in Ontario but she told me that since we spent a week at here house that now it hit home with her how much work Lorena really is. I must say that it puts a strain on our family life at times. Still we would do anything for our kids well being and we are so thankful that the Lord has chosen us for this task . We love our little girl and she is a wonderful blessing to us and we gladly do all that needs to be done for her. The time that is involved for her care is not our biggest worry but we are more concerned about what we need to do to keep her growing, how to get her to eat? Will we ever get her off the NG tube and eating on her own? and if so when? or will she need more risky surgery for G-tube?

Our other worry is her heart. Will she need heart surgery? Lorena is not your average healthy baby yet even though she looks like she is. Therefore we ask you all to please continue to remember Lorena in your prayers. I know that the Lord answers prayers as He has already answered many prayers for this little girl. Lorena is to us the most amazing miracle we have experienced. We ask you to pray for healing of her heart and of her feeding difficulties.

We are touched to know and hear that so many of you are still praying for Lorena. Believe me this has been encouraging for us. I was touched also by the people at Trudy's church in Ontario were we visited one Sunday. Many told me how they were praying for Lorena and when one couple pushed some money into my hand I was touched that they would give a gift of $100 to a stranger. This gift will help with the extra expenses we still have for all the parking fees for all those long hospital visits. We continue to be thankful for the prayers and encouragements.

Tomorrow November will start and we are heading into winter with new experiences for Lorena, like touching snow and her 1st Christmas. I always am so thankful to the Lord and I can get emotional sometimes when I see her do or experience something new again. This mother can not forget that it could have been so different, we could have lost her. Lorena truly is a blessing to us.

Love in Christ

Lodewyk, Rena, Janita, Jeremy & Lorena

PS: As I am late sending out this update on November 1, I would like to add that this morning Lorena figured it out and she is now starting to crawl up on her knees and forward.

Celebrating Janita's 15th Birthday on September 20th,

with a Dutch flag cake.

An afternoon out to the mountains in early October.

Lorena's 1st time out to the mountains.

Yes mom, I like sitting in my stroller and seeing the mountains

while you push me around.

Lorena's 1st hair cut when she was almost 9 months old.

Best Buds !

Time for an other family picture.

Lorena is 9 months old.

Watching a movie on board a West Jet plane heading towards Ontario.

October 17, 2008.

Sleeping while being fed through the NG tube.

RENA, LORENA & RENA.

I was thrilled that my cousin came over from London to visit us.

We have a lot in common, my cousin Rena & I:

- Our maiden names are the same - Rena Timmermans - as we were both named after

our fathers sister who died at a young age in a train crash in Harmelen, Netherlands.

- We both have our Birthdays on June 20, but cousin Rena is 2 years older.

- Cousin Rena & I were both engaged on April 10th and we both married in the fall at age 25.

- We both married a younger husband with the same occupation as technologist

and both husbands were 1 of 9 kids.

- For both of us children did not come easy. Cousin Rena was blessed with a son after

many years of waiting.

-As for our hobbies both cousin Rena and I love to do scrapbooking.

Sometimes it can be of benefit to have a cousin with the same name. About 14 years ago when

we were just married I lost my club Z card for collecting point for gifts. So I went to customer

service and got a new one. Then one day I noticed that I had lots of points and I did not even

realize it earlier. So I went to pick out a beautiful coo-coo clock. Then a few months later cousin

Rena phones and asks me if I got a nice Zellers gift as all her point disappeared suddenly. What had happened is that I still had my card on my maiden name Rena Timmermans even though I was married but so did Rena. They asked me for a birth date and I said June 20 but they probably failed to listen to the year of birth. The new card they gave me was actually my cousins. So here we were both using the same card and racking up points. Cousin Rena had saved points for a long time but unknown to me I was the one who beat her to it and used up almost all the points. On her end she finally figured out with customer service that points had been added in both Ontario and Alberta and she realized that her cousin had caused her all this grief. I never realized until

Rena phoned me but I was happy to hear that she got all her points back as they took full responsibility for the mistake they made. I did not need to return the clock as it was already used, so still today we enjoy our clock.

Thanks Rena for letting me borrow your points