First Follow up

Yesterday we went back to the cardiologist at UVA for her first check up. Our appointment was at 12:30 and we finally left at 2:50. What a long wait! I will definitely be prepared next time to sit there for a while. She had an EKG done and they said it looked great. They did not do an Echo nor did they check her oxygen saturation levels as I wished they would. Dr. Hamill said she looks great and she is healing fine so he I guess didn't see the point in it. Her next check up isn't until Aug. 27th. She weighed in at 9lbs 12 oz. I asked what an average baby her age should weigh and he said 12-13lbs so we are just a little behind. They dropped her Lasix dose down to once today and once tomorrow then no more. Yeah! Then she will only be on thrush medicine for a few more days then back to normal. She had her first prune juice bottle yesterday. She is so messed up from the lasix that her belly doesn't know what to do. So we will be glad to get off of it finally. She for some reason is back to sleeping only 2 hours at a time at night and really has no interest in sleeping during the day unless you hold her and don't move at all for two hours even then you are lucky if she stays asleep for an hour maybe three to four times thru the entire day. I am almost excited for her to start daycare so we can try to do a schedule with her that we can both be on, not just whatever she wants.

Thursday 7/24

Well our first night home was rough but last night she decided that she doesn't mind sleeping. She hit the 5 hour mark and I had to wake her up to get her to eat and then it was 4oz. She may be getting the hang of this being healthy thing. The only thing that seems to be bothering her is gas, at least today. We haven't even had any tylenol today. It is amazing how quickly she recovered. We are unable to lift her under her arms for 6-8 weeks. That is a little hard to get used to. She is on lasix two times a day still and now on thrush medicine. Yeah thrush again! Poor thing just can't get a break. She does weigh 9lbs 3 oz as of yesterday's doctor appointment so we are getting there slowly.

Monday

Another rough night last night. She was given pain medication later than normal last night when Grandpa and Grandma Royal we leaving around 8:30 then she woke up around 11:30 screaming so the night nurse gave her some more pain meds. Once she went back to sleep her heart rate dropped to 87 and set off her alarms and scared me awake. They came in and hooked her up to an EKG and by that time her rate was back up because she was awake. The next time she fell asleep it did it again. I was so nervous I didn't want to go to sleep, the pediatrician on last night had me a little freaked out but the cardiologist came in this morning and spoke to me and was not concerned in any way about the drop. He must have come to the same conclusion we did. She was over medicated and just in a deeeeeepppp sleep. They have now taken her off of the oxycodone completely (hmmm wonder what made them come to that decision) she is now only on the tylenol as needed.
She gained weight though, she now weighs 4kg (8 lbs 13oz). We are working with a speech pathologist to get her on a better (any) feeding schedule. She eats every two hours and no set amount. By the time we leave here we hopefully will be a little more structured so when she starts daycare she won't be in for such a shock!
She also had an Echo done this afternoon and the woman doing it said the photos looked great, but the cardiologist would review. I don't expect to hear from him since we rarely see him.
We may or may not be told approx discharge date soon. They said they would do the last echo before discharge so since they did it today I am assuming discharge is coming!

Sunday

Well we were in such a good mood yesterday that we stayed up from about 4pm until 2am with about an hour nap total. Of course as soon as she falls asleep this morning they come in and wake her up to make her eat. She wasn't interested in eating before since she was soooo tired. They also took her weight yesterday when we got onto this floor and she weighed 8lbs 10 oz (3.94k) and then around 3am when they weighed her again since she wasn't wanting to eat she weighed 8lbs 6oz (3.81k) They are still giving her lasiks so that explains some of the loss but still to only be 2 oz bigger than what she weighed when she was born.
The Cardiologist will be discussing her lack of weight gain today and what they plan on doing. It sounds to me that we will be here at least monday maybe tuesday. They have already increased her calorie intake on her formula to try to help. We shall see.
I have to wait to post pictures, this laptop is not happy with my memory disk and won't work with me.

Afternoon Update

We sucessfully got a private room on the floor. We are in a great mood this afternoon and smiling. We are in room 7174a. Pictures to come later.

7/19/2008

We have not been to see Autumn yet this morning, we are waiting for her to get a bed so that we are actually able to spend time with her and not in the way of the PICU nurse. There are two babies including her in the room she is in and we feel like we aren't supposed to be in there for more than five minutes at a time. You can imagine our anxiety to hold her again.
I just got off the phone with her day nurse Rebecca who informed me that they have taken out the "B" line (pacing wire leading from wrist) and she is doing fine. She is down to two lines still in. The normal IV for fluids, and her central line (leading from the neck directly to the heart). She will have the central line pulled right before she goes onto the floor. She did mention that there are 7 kids all awaiting a bed on the other side so hopefully we will end up with a private one. She will call us as soon as they transfer her. She also mentioned that they have already set up discharge orders for her. Rebecca said that they may or may not intend on discharging her tomorrow. I was hoping they would monitor her at least one more day but we will see how she progresses. I will be terrified to bring her home now. I thought I was nervous after she was first born!

7/18/2008

Autumn came off oxygen this morning and was able to hold her own saturation levels. This evening they took out her "A" line (pacing wire) and when there were no complications with that they then removed her chest tube. They also decided to take out her catheter. So she is spending the night in PICU again but only because there is no sense moving her this evening. They will move her to the floor (pediatrics unit) tomorrow morning. Now, knowing what we have learned over the last week of being on the hospitals schedule that will probably mean tomorrow early afternoon. But at least we will be able to stay with her, if she ends up getting a private room. OH please let us have a private room!