19 SEPTEMBER 2000
This has been a busy week for Rebecca, a lot of worry. Rebecca had been suffering from hypothermia, her body temp was down to 96*, they wrapped her and warmed her, the nexy day it would go back down again. Yesterday she had a fever of 103* today it went up to 105*. All the tests are negative, they can find no bacteria, no infection. A team of Dr.s looked her over today, all threw their hands up in the air. Last night her Dr. said it could be terminal, or not. Happily.... this evening her temp is normal, she is smiling as she always does through thick and thin. She was moved to the ICU again, she was also put back on CPAP (constant positive air pressure)this is like a nasal canula, only much more irritating. This keeps constant air pressure in the lungs, which she needed because of her fever, it was making it difficult for her to breathe. She is still not stable enough for a heart catheterization. The Echos are not showing very clearly what the thickening on the tricuspid valve are. And..... they are waiting on ONE more test. She should be back on the Paediatric ward within a few days. We are waiting for her to be home as usual, she will be ok.
21 SEPT 00
Rebecca was in a cheerful mood today. I held her for a long time. Her big brother came today. When she heard his voice, she turned her head completely over to the left to see him. Little Becca is looking much better and the CPAP is off, she now is getting a mixture of 25% oxygen and 75% room air. I spoke to one of her Dr.s, there are so many of them I'm not sure which! They are planning another echo in the morning. She is off 2 of her antibiotics as well. She will have to be moved to the pediatric ward before she can come home (hospital policy I suppose). We rejoice here at home.
24 SEPT 00
Yesterday Rebecca got transfered to the pediatrics ward, she had a good day and slept well during the night. Today she played with her hands and moved around a lot more, getting more and more active as she begins to feel better. They still won't give us a time to come home. Although, it seems she is refluxing, no info on whether she will get medication or surgery,(my guess is they will try more medication and then surgery). She is on continuous feed, rather than a lot every 4 hours, she gets a little all day long, it seems to help. She is also on a new formula, regular formula is 20 calories. She was on 24 calories. (we had to special order a BUNCH of it) she is now on a 27 calorie formula. The stuff we bought for at home was very expensive, but they said there is something you mix into it so we will still be able to use what we have when she comes home. We read a small story on the 23d psalm.
27 SEPT 00
We saw Rebecca yesterday but not today. She was so very happy. It was bittersweet, she has lost a lot of weight. 9lb 8oz(4.9kg)now. Two of the cultures came back positive. They are retesting today since for so long she tested negative on everything. When they find the cause of the bacteria on the tricuspid valve she will be getting the correct antibiotic, but she will need to stay in the Sibley Heart Center for 6 weeks while they are administered. We were very sorrowful when we returned home. She just smiled so sweetly. While on the homefront there are many things taking up our time and some evil people who are using up quite a bit as well, please pray for us.
3 OCTOBER 2000
Today Rebecca is 28 1/2 weeks old. She has spent 25 1/2 weeks in hospital. She is still having little fevers throughout the day, and her temperature has drops as well, I suppose she is trying to figure out just where it should be. Becca has gained a little weight back. She is still on a continuous feed, which is helping with the reflux and helping her get her weight back. We are encouraged, and also very grateful for all your prayers, the many who have stayed on watch for Rebecca and her family. I hope to get some more pictures if I can remember the camera!
6 OCTOBER 2000
Rebecca is doing much better, we are so happy to see how well she is getting on. I have been holding this back, the Dr. had said she is well enough to come home maybe this weekend. We got the final word today, MONDAY! We are very excited, they have taken her central line out and she is off the antibiotics. Praise the Lord!
9 OCTOBER 2000
Getting Rebecca homes seems to be easier said than done. She went down for a chest X-ray tonight, and tomorrow she gets an MRI and an Echo. She is doing so well, happy and smiling. Gaining weight, moving everything. But those fevers keep coming. She has a blanket hooked to a machine which can make it either hot or cold. The MRI will look and see in the hypothalmus, whether or not there is something structurely wrong, a cyst, calcification--or whatever, which may cause these wierd temperature sweeps. This is the part of the brain which controls the body's temperature. We had a good visit though and big sister Gabrielle came to visit too. She is used to being the baby herself, but played with Rebecca anyhow.
11 OCTOBER 2000
Rebecca finally got her MRI today, so we won't know the results until Thursday, and she will also get her Echo then, so we should know by Friday on that. We love her and miss her so very much. She seems happy, her eyes are a little sunken because of her weight loss, she is still just under 5 kilos (10lb 13 1/3 oz). She turns to her left side to follow us around the room, she reaches for us and reaches for toys that hang above her, she is progressing well, so we wait. God is wise.
14 OCTOBER 2000
A little bit of good news, Rebecca should be coming home Monday or Tuesday, of course they said that last week. We are still waiting to hear from Dr. Hopkins on the results of the MRI. The nurses can't tell me anything, we are hanging on, Rebecca has been hanging on the longest, and all of you, thank you for hanging in there as well!
24 OCTOBER 2000
I haven't updated in a while since there seems to be no change, everything seems well to me, but these doctors are just not comfortable with these periodic fevers, the MRI was negative, which is good, but that of course means more and more tests, until something, some cause is found. So she stays there, and we wait, it is a very trying time. I am a little preoccupied with al this and many things, feel free to e-mail us if you wish.
28 OCTOBER 2000
Another MRI was done on wee Rebecca, came out normal again. They are talking about her coming home, but not any time soon, in short, same as it ever was. She is happy, we will be happy for her.
2 NOVEMBER 2000
Today, Rebecca will be coming HOME at 12 noon EDT!!!!!The very long awaited Homecoming, I have no words.
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