Here is another picture of my little munchkin. It was taken on April 2. I am going to take new pictures soon. Robert bought me a new camera (I LOVE him!!) and I should receive it any day now.
Unfortunately Michael wasn't strong enough to breathe on his own. That means he will have to stay on the respirator until they are going to try again. The problem is that he needs to be stronger, which come with weight gain. To ours and our Doctor's shock, this week he lost weight!! He went from 890 grams to 820. When the nurse told me that on the phone, I just choked up and couldn't even respond. I was so disappointed and worried! It may have been caused by the diuretics (plas pillen in Dutch) he received,
A few days ago, the Doctor had nonchalantly mentioned during one of my visits that the brain scan looked good, no brain bleeds, but the cyst was still there. I was shocked (again, couldn't talk) because we didn't know that he had a cyst in his brain and when I told Robert, we decided to get the doctor on the phone for a seroius discussion. The doctor apologized that we weren't told about the cyst, but that its very common and the type that both preemies and full term babies alike may have, and that go away without any brain damage on their own. It is so minimal that it should probably disappear over the course of the next few weeks. He also mentioned during the discussion that Michael was critical and almost died during the first two weeks. We never had received that impression. We were told that the first week was the honeymoon period, that they had some complications in week 2, but never the severity of it. Actually I am glad I didn't know if I look back. But we urged the doctor that the communication did lack on some parts. Probably because there are two doctors and they might have thought the other one had informed us. Anyway, after our phone conversation, I don't think this will happen again.
The strategy is to give him more calories to get him to gain weight, weigh him again next week for progress, and continue that for 3 weeks or so. Then, when he's stronger and more substantial, they will try the low dose steriods treatment again to try to extubate him.
So, even though Michael is doing okay (he is stable, and things could be much worse) we were disappointed this week. We certainly hope that next week will be better...
Thanks to all of you for your love and support!
Love,
Robert and Nathali
1 comment:
I can't wait for you to get your camera and get taking more pictures of that sweet boy!!
I know the lack of communication that can occur in the NICU. Scary when you think about it. I suggest asking for a team meeting once a week that way you are all on the same page. That is what we did and it helped. Although at the same time it was hard because then we KNEW when Ashton was very ill. Sometimes us as parents just don't want to see how sick they are and don't really realize how quick things can happen.
Losing weight is very common. I wouldn't really worry, he will catch up trust me! My little man is almost 23lbs and I cannot even remember when he was 700 grams!!!
The cyst thing is difficult too especially since you didn't know. That is wonderful news however that he doesn't have any brain bleeds as of yet!!
Keep your heads up!
Praying for baby Michael daily....
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