Rebecca 8

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15 JUNE 2000 Tonight Rebbecca's nurse told me that she had heard during report that Rebecca would be coming home on Monday or Tuesday! We hope this is a true thing. Her central line had been removed, and a "partial" central had been placed in her arm. She had to be put back on 100% oxygen, since she became very agitated during the removal and replacement, I would have too. She has lost 2 ounces, since her added calories had been cut to 24. We don't know why she is requiring these additional calories, please keep this in prayer. 16 June 2000 We got a ton of information tonight from the nurse. We will have to (re)learn infant CPR, learn how to insert a feeding tube in the event that it comes out. Sunday night we will "room in" at the NICU. To sort of get used to having her with us, in case anything unexpected pops up. A nurse will 'visit' everyday for 10 days, and then 3 times a week. Rebecca will be coming home with a cardiac monitor and probably a pulseoxymeter monitor, also a tank of good old oxygen. We are a little aprehensive about her going away from the hospital, as much as we want her home. Hopefully we should be comfortable by Monday. She has ben brought down to 70% on her nasal oxygen as of 11 pm. She is very wiggly and had some smiles too. 17 June 2000 This evening, Sarah and I went to see Rebecca, it was a little late. I held her for a while and talked to her, she coughed, then she started crying very loudly, I sang to her, talked to her,bounced her, hugged her, all to no avail. An alert nurse came to the rescue.(I did not want her to turn any bluer, you see.)She needed a little lasix(a diueretic) to help get some of the fluid off, she put a little oxygen mask near her face, and lo and behold, it was finished! I was very frightened, but fortunately I know what needs to be done now. We are beginning to see the importance of getting more information on caring for her. I did get some large smiles before the comotion although.

18-19 JUNE 2000 We have been getting a lot of information about caring for Rebecca, actually it is information about the information we are going to get. That will be tomorrow. We will "room in" during the day tomorrow. We will need to learn how to insert her feeding tube(it goes through the nose)in the unlikely event she pulls it out, the tape is pretty strong, so hopefully that will not happen. We will learn very many things, sort of like an assistant to the assistant of the nurses assistant. enough to get us by, and keep Rebecca going if need be.She was a little agitated today, I did what the nurse showed me a couple of days ago, I put my arms under her and lifted her to a reclining, sitting position, and just talked to her. In seconds she was her happy self again. Of course she would not let me lay her back again, though. Fortunately she fell asleep after a few minutes. God is so Good.Have youGot Jesus? 20 JUNE 2000 Today Jenn and I spent several hours at the Hospital, I learned how to put in the tube, it was easy,not too easy, she did not like it. We changed her diapers, changed her bed, and had a good time of just being with her. Tomorrow we go back to learn about the monitors and things, Jenn will do the feeding tube. We will be taking the carseat with us this time. She is coming home!

21 JUNE 2000 The carseat is sitting in Rebecca's room at the hospital. As is Rebecca. She is all set to go home, but there were no nurses available from the home agency to come tonight. We are a little disappointed, but it will give us one more day to find out everything we can, and learn some more about taking care of her. We have 8 cases of a special 24 calorie formula, but the home nurse is supposed to show us how the pump works, a lot of little details to attend to. The air conditioning unit for her room went out today, it will be fixed by 3:00 pm tomorrow, Rebecca will be home at 4. God is merciful. 22 JUNE 2000 Rebecca came home a little early today. We had 2 nurse visits. Rebecca got a little gas, and began crying, we tried to comfort her. She used so much energy her eyes rolled back in her head. She was pulling very hard to breathe. She had pulled out her NG tube out. I had to put it back in while Jenn was holding her. We gave her some chloral hydrate through it. It just didn't work. Not strong enough I guess. The para-medics came, she began to calm down and her stats got better. The midnight nurse came and all was well. While she was there Rebecca started again, this time when the para-medics came Rebecca left with them. She was marginally calm in the ER, when she went back to the NICU she got extremely agitated again. In the NICU they have better sedatives than what we were given for home. SO she is doing better now. We left her about 4:30 AM. On a different note, Rebecca passed her hearing test, so that is a good sign, and finally. we will meet with Dr. Carraway. It is possible that her extreme agitation episodes are neurological in nature, hopefully he can tell us more. Dr. Leigh said we will meet on Saturday. It is possible that we will be given some Versed(much stronger) to help with these spells, when she returns home. It was a very frightening experience.

23-24 JUNE 2000 On Saturday we met with Dr. Leigh. He told us he probably expected her back, but we would be shown how to manage these episodes. It is now up to Jenn and I to decide her discharge. These episodes are not neurological in nature,Praise the Lord! They are however, very common in "heart" babies. They can also be terminal. I went to see Rebecca very early this morning, about 12:30 AM. SHe had had another episode, and was struggling. She was just using all her energy to keep going. Her Pulse was over 200, and respiration well over 100. We believe she needs to be given a light sedative on a schedule, to keep her from getting to that point, she finally got comfortable and went to sleep about 3:00 AM. Dr. Leigh says that they will probably move up her open heart surgery. When her band gets too tight, they will probably do the surgery to close the VSD's. The episodes will stop then.

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