January 29, 2008

Dear People,

Today is January 29th already and Lorena is 13 days old. Somehow because of all that happened it feels like she has been around for months already. It is hard to imagine live without her. Like I mentioned in a previous mail my stress thermometer is still working. When ever I get stressed over something to do with Lorena the amount of breast milk I pump becomes less. Today that was the case for me again.

Lorena has been spitting up with most of her feeds over nigh but kept some of the milk down some of the feeds. When we came in this morning I was distraught to find her laying in a puddle of spit up. Some of it was still wet but some was caked on and dried on her shoulder. Of course the mother in me started cleaning her right away and soon a nurse appeared and apologized that she needed to be with an other patient for a minute. Janita and I cleaned her up really nice and got her into a warm dry sleeper again. Off course this meant she had thrown up most of her feeding again.

Schedules and doing things at normal times seem to be hard to keep. The laundry had badly piled up and so it was high time to do laundry. So here I was doing laundry from 11:30 pm to 1:30 am. So I did not get to bed until after 2 AM after pumping again. This lack of sleep in turn caused me to make a bad mistake in the morning. Being so tired and out of it I started pumping again shortly after arriving at the hospital. Ever tried pumping without a bottle attached to catch the precious breast milk? I pumped for 5 minutes and did not notice it was all dripping on the bed I was sitting on. Any other time this might have been funny to me but I know how precious this breast milk is for Lorena, so instead it just cased more tears. How could I waste even 10 ml of this milk? Her feedings go better when there is enough to at least mix the breast milk with the Similac 50/50. As when we found her in the spit up this morning she had just had 100% Similac as they had run out of the breast milk.

Things also can turn around so easily every time, we know how drastic from last weeks experiences but this week, yesterday was looking so hopeful with the outlook of being able to nurse and then today an other reality was being driven home to us. Around noon a home nutrition consultant came by and she came to teach us how we need to change the NG (nasal gastric) tube as we will most likely have to do this at home. This kind of hit home too hard for me and I was able to listen to all the instructions on how to change the feeding tube through her nose but when it came time to actually practice this, I was in tears yet again and in no state to do so, today. So instead Lodewyk did it today but I will have to do it tomorrow morning. I am not a medical person at all and now I have to practice this uncomfortable procedure on our own little girl. It scares me to know that if it goes wrong it could end up in her lung instead or coming out of her mouth. I was so thankful that Lodewyk stepped up to do the 1st try as I did not even get used to the idea yet of having to do this. Lodewyk did an awesome job putting in the feeding tube so that is helping me to build up some confidence for tomorrow when I will have to take this tube out and put a new one in. Yes, we get to practice on our very own baby Lorena. I am praying for confidence and that all will go well tomorrow when I need to do this. Today also having to deal with the reality that she may come home when we still have to feed her through the NG tube ourselves was already hard to deal with, so it all came as a surprise and I was so unprepared for this and I was not up to doing this at all yet today. I am nervous about having to do this tomorrow but I know that Lord will give me the strength to also be able to care for her in this aspect.

Lorena  still gets 54 ml each feed and it is fortified with calcium so that she does not loose to much weight. We are trying hard to figure out what works for her to keep the milk in. Today we decided that because she seems to spit up each time we move her with the feeds that we would feed her in her bed. Having her bed upright as much as possible with a towel propped under her bum to prevent her from sliding down, we 1st feed her from the bottle and then just 4 to 5 swallows at a time and then  we pull out the bottle to pace her so that she does not start to gulp it down.  Then when she has had about 20 ml via the bottle she is tiered and we hold her up to burp her. Then the rest gets fed via NG tube while she lays in her bed without being moved. We also give her at least 1 hr to digest it before we dare to pick her up. The last 2 feeds were successful doing it this way and both feeds stayed in. We are thankful for  each feed that stays in as she so much needs to start growing. Today Lorena lost an other 15 grams.

A little highlight of the day was when the social worker came in. We have gotten to know the social worker and the spiritual care worker quiet well as they were there to encourage us when Lorena's lung collapsed and she was rushed back to intensive care. She came in to tell us that volunteers make little gifts and she was bringing us a nice red teddy bear blanket. It is wonderful to know that volunteers take the effort to bring some caring and some cheer to other people. I wish I could thank those who made this.

We want to let you know that we look forward to finding some messages on our computer each day. This is encouraging to us.

We thank you for your continued prayer for Lorena on this long road to recovery.

Love

Lodewyk, Rena, Janita, Jeremy and Lorena

A content baby Lorena.

Trying to wake Lorena to feed her bottle.

Mom feeding Lorena a bottle in her bed.

Burping Baby, after drinking from the bottle.