Dear family & friends,

 

 

Lorena is a very bright and quick little girl. She seems to be fast with her development in all areas so far. She responds very easily with smiles, can talk like she is seriously telling you a big long story and on Saturday she started to roll on her stomach already, about 4 weeks earlier then most babies. She grabs for the toys around her already and can focus in on little things and study them for a while. She still is very small for her age but her development is not any slower for it. She currently still weighs less at almost 4 month then my own birth weight. We enjoy Lorena each and every day.

 

This past week the bottle feeds have gone very well with feeding her laying down on her side and pacing her. She seems to take more of her bottles this way. Now most of the time she is drinking about 80% of it or at least 50% and she is starting to finish some bottles completely here and there. When there is only a bit left we give it with the syringe through her feeding tube. These feedings sure go a lot faster now and we have more time in between feeds. Lorena is finally starting to feel more like a regular baby except for the bits of milk we still need to put through the NG tube. We are thankful for this progress and we hope that Lorena will start drinking all of her bottles completely empty soon so that hopefully we can get rid of the feeding tube again. However so far each week has been different so we have learned to just take it all one day at a time. 

 

I have been pumping every 3 hours (except I now skip one time at night) for all this time since she was born and I plan to continue to do so for a while as I know Lorena does not tolerate the Similac formula as well. I am now almost able to keep up with the amount she needs but every few days I run a bit short and we feed her 40 ml breast milk and 20 ml Similac until I catch up again and then she gets 60 ml breast milk. All milk is now fortified to 30 calories instead of 27 calories. I have decided to continue to give nursing a rest until she starts growing enough on this fortified breast milk fed through the bottles. As when I nurse the milk is not fortified. Still I am sad that I am not able to nurse her yet as I so much wanted to nurse her. Yet I am thankful that I can feed her the bottle now rather then putting it all down with the NG tube. As bottle feeding is much more personal then tube feeding.

 

I have been extra careful with Lorena this past week as I am struggling with a sore throat which I seem not to be able to get rid of. Already we have always washed our hands every time we handle her but now I am even more careful. Both Janita & Jeremy do not have a cold and that is a first in a long while as they seemed to have been taking turns on having colds over the last months. It is nice to see everyone be able to get involved with Lorena again. Janita loves to hold her and Jeremy likes to sing songs to her and show her funny faces to cheer her up when she cries.

 

Monday the weather was so nice and we had the privelege once again to go out together for a few hours as Marian came to take care of Lorena once again. Lodewyk and I had a nice lunch at the chineese restaurant and it was great just to get out together. Jeremy has been patiently waiting for warm weather and he has been talking about growing things, over the last weeks. He has even been collecting seeds from everything we eat. And so on Monday he was thrilled that he and dad could finally set up the little greenhouse mom bought on a garage sale last year. He can't wait to grow all kinds of plants. Perhaps he also has a green thumb, it runs in the family as mom used to own a greenhouse business, growing English seedless cucumbers.

 

Today was a full day again with 2 appointments to keep and so we were out the door by 8:30 and finally returned at 2 PM again. After having given birth to Lorena, no doctor has seen me yet and so I was long over due for my check up which i finally had today. There just was no time to think about myself before with all the extra care Lorena needed. We had our long awaited appointment with the cardiologist this morning. I had written down all the questions we needed to ask but then things went all wrong this morning and with the rush out the door I had forgotten it. We had it all nicely planned out and had just enough time to give Lorena a bottle and then drop off Jeremy at school on the way to the hospital. Lorena has been drinking her bottles so well laying down but she decided that she did not want any of it this morning and so we had to do a NG feed but this takes so much time and we needed to be at the hospital by 9 AM. So mid NG feed we decided to stop and take the whole works in the car and finish feeding her through the NG tube in the car. Still Jeremy was a little late for school and we did not get the feed done until we were at the hospital. Now we know that it is possible to give her a NG feed in the car too (not easy but possible).

 

We have some wonderful news from the cardiologist. First of all Lorena will not need the oxygen any more. Her trail period is over and the oxygen tanks are going to be returned, picked up on Friday. We thank the Lord for this. The pulmanery hypertention has healed and it generally does not return, so we don't have to worry about this anymore. Thank you Lord again for answered prayers. The hole in Lorena's heart was also a big concern to us but as the doctor explained it is all looking so good. Dr. Patton thinks there is a good chance that Lorena will not need a heart operation. He thinks the hole will grow closed on its own as it already has some tissue over the hole. This may take 2 to 4 years before the hole grows closed. He also said that there is a possibility that if it does not grow all the way closed that she could live with this hole in her heart. As in some of these cases the risks with the operation are greater then the risks of living with a little hole. Still the possibility remains that the she may need a heart operation as not all holes grow closed. Dr. Patten also listened to the heart murmur and the sound of the blood pumping through the hole was very soft he could barely hear it which he told us was good as there is not a whole lot of blood going through there then. So all in all it is sounding so very positive and hopefully she will not need a heart operation. We are so thankful for this. Still we will continue to pray that this hole will indeed heal and no operation is needed. Time will tell but for now things are looking very positive. So it was a lot of good and hopeful news we heard from the cardiologist. Truly the Lord has shown us His mercies and has answered so many of our prayers. Lorena is a wonderful gift from the Lord. She is our little sunshine especially as she is such a happy baby now and so eager to smile so quickly all the time.

 

Since Lorena came home from the hospital we have had at least 1 appointment at the hospital each week (all but 1 week). At every appointment they seem to ask a whole lot of the same questions again. We are getting tired of all these repeated same questions....don't these people keep a record that they can read? Then again we are thankful for all the medical help Lorena has received so we patiently answer the same questions over and over again. However it seems that we now have a bit of a nice break as we do not need to go for any appointments at the Children's Hospital for 3 weeks when we see Dr. Eccles again. This is a very welcome break from the hospital indeed.

 

I have decided to send out my next update in about 3 weeks again around May 21st and will probably start to send monthly updates after that.

 

We want to thank you for keeping us in your prayers especially over these past difficult months. I hope that all of you have experienced with us how the Lord has answered our prayers. Truly our God is a merciful God. We thank the Lord for His mercies bestowed upon us and we truly are thankful for every wonderful step of healing for Lorena.

 

 

Thy Providence my life sustained,
And all my wants redressed,
While in the silent womb I lay,
And hung upon the breast.

To all my weak complaints and cries
Thy mercy lent an ear,
Ere yet my feeble thoughts had learned
To form themselves in prayer.

Unnumbered comforts to my soul
Thy tender care bestowed,
Before my infant heart conceived
From Whom those comforts flowed.

Ten thousand thousand precious gifts
My daily thanks employ;
Nor is the last a cheerful heart
That tastes those gifts with joy.

Through every period of my life
Thy goodness I’ll pursue
And after death, in distant worlds,
The glorious theme renew.

Through all eternity to Thee
A joyful song I’ll raise;
For, oh, eternity’s too short
To utter all Thy praise!