Rebecca 6

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15 MAY 2000 This morning Rebecca had an echo done of her heart, some new things were found, a plural effusion, which is small pockets of fluid between the lungs and the chest, they do not believe diuretics will clear it up so they are putting in a small (IV sized) chest drain in to clear it up. Also the tricuspid valve of her heart has a vegetation on it, this is a small growth indicating possible infection. She will be getting blood cultures everyday, and she will probably NOT get the cath test done as this not a good idea now. She is stable and has been quiet, just resting. 16 MAY 2000 When Rebecca's chest tube was inserted, fat started coming out. She has chylothorax, which is a tear in the lymph system. Breast milk and milk based formula's fat chains leak through. But it is coming out and this will make it easier for her to breathe. She is now on a non-milk based formula, with a bigger fat chain. I do not know what this means, but the nurses did. They have found 3 infections in the cultures, so she will be getting anti-biotics for 2 weeks, and then her cath test when the infections are all gone. she is not coming up here very soon. rebecca took a hold of my little finger and held it for almost half an hour, her grip is stronger!

17 MAY 2000 Today some blood was discovered during a diaper change, they suspect colitis, so she is being fed differently and will be given more anti-biotics until this clears up. Psalm 13: 1-6. Psalm 147: 3.
18 MAY 2000 Today Rebecca is 56 days old. 8 weeks. Rebecca met her sister Sarah for the first time today. She was wide awake the whole time. She had a little fever (101*) so her nurse put a fan close by and gave her a little fluid. Rebecca was a little agitated, but while mommy would talk to her, she would quiet down and just look at her. 19 MAY 2000 Rebecca was taken off of the ventilator today. We did not find out until this afternoon, when we called down. There was talk of transferring her soon. 45 minutes later we recieved a call from the hospital. She had a set back. Her heart rate dropped to 30 and she stopped breathing. They used chest compressions to get it back up. They think that possibly all her sedation caught up with her. They are not sure, the plan is to wean her down again. 21 MAY 2000Rebecca seemed comfortable today. She responded well to her sisters, Ariel and Sarah who visited today. Her ventilator is on minmal settings, there is a possibility of her cath test as early as Monday. Her color was pretty poor, but she just seemed ok.

23 MAY 2000There was no cath test on Monday, Rebecca got it today. It showed the pulmonary band is now too tight. It is forcing some of the "blue" blood back into the oxygenated blood. One possibility is to ligate or cut the artery and place a shunt in. This could be a permanent appliance. There is still a possibility of open heart surgery to repair the VSD's. This is not an optimal choice, since her heart is so small. Also when blood is sent into the right heart like that it can cause it to thicken and bring on right heart failure. Dr. Tam will decide what to do in the next few days. The nurse tonight is going to try and schedule a Care conference for this week. 24 MAY 2000 Jennifer will be meeting with the doctor tomorrow, hopefully. They are still planning on weaning her off of the ventilator. We are still hoping an praying for the best. We do not know which surgery will be chosen. We worry that they will not get it right. Each surgery seems to bring a new problem. 25 MAY 2000 Rebecca is down on minimal settings on the ventilator. She is getting no breaths per minute, just the air pressure, like the CPAP.She might be extubated this afternoon.
Rebecca was taken off of her vent and just has a little oxygen going through the nose. Jennifer held her for a few minutes, she did not tolerate it well. Perhaps not being held for so long. She is sleeping, and will be kept sleeping through the night so she may gather more strength. We are very encouraged by this, and thankful to the Lord God.

26 MAY 2000 We met with doctor Tam and his nurse today, we were expecting a geneticist and a neurologist as well, we didn't see them. The plan is to transfer Rebecca back to Gwinnett tomorrow, we are pleased about that. According to doctor Tam, her agitation seems to be a sign of a neurological disorder. Her Head CT showed mild hydrocephally, which is water on the brain, it showed some abnormal calcium deposits as well. This is possibly the result of a clot that went away and left some calcification in the vessel. He did not know. If it is determined that Rebecca will not be a thriving child, they will leave the band on her pulmonary artery until it grows bigger and eventually suffocates her, we do not know who makes that determination. They want to wait a few months, at that time the band will be very tight. We do not accept this. She does what normal babies do. We do know that God will heal her, there is no doubt about that. Please Lord, answer me quickly, my spirit fails. Do not hide Your face from me, lest I be like those who go down to the pit, let the morning bring me word of Your unfailing love, for I have put my trust in You. Psalm 143 27 MAY 2000 Rebecca came back to Gwinnett today, the nurses who had not seen her in a month said she looked so pretty.Of course! She would get very agitated when we were touching her. I think it is because she is off of her methadone and chloral hydrate, without being fully weaned from them and probably experiencing some withdrawal (she is on phenobarbitol at Gwinnett) also she is a lot more awake and alert an about face from the stupor she has been in for the last many weeks, which is a little different for her . She did not clamp down and stop breathing as she has in the past. We thank God that she is just that much closer to coming home. There is the matter of the VSD's and the removing of the pulmonary band. We are asking your prayers for this and the hydrocephally. 28 MAY 2000 We finally, got in to see Rebecca late this evening, she was wide awake and waiting for us. We held her back and forth between us for an hour and a half. She was very glad to see us. It seems she would rather have her fingers than a pacifier, which is ok with us. The only problem we noticed is that her eyes seem to flicker, sort of move left to right. Doctor Leigh seems to think it is not a problem, but will be watching just in case. We are very encouraged by all we have seen, and not too discouraged by what we have heard.