11/26/08 Cardiologist appointment

Ashlyn had a cardiologist appointment today. He O2 saturation was 98%, which is great! Dr. Huhta also took her off the Enalipril, which means she is not on any meds! She weighed in at 10lbs. 14 oz. and last Tuesday she was 10 lbs. 1 oz. so she is gaining weight great. She should be for eating 4 ounces most of the time every two hours! She had an Echo and an EKG and it looked good. She still has a leak around the VSD patch, but that should closeup on it's own in time. All in all he said she looks great and healthy. Now we are in the process of getting her insurance to approve the Synergist vaccine for RSV. They don't like to pay for it, seeing it is $200 a shot, but in her weakened condition it would be very dangerous for her to get RSV. So hoping that goes through for her. Her next appointment is not until January 9. Next Wednesday we will be going to our first Mended Little Hearts meeting which is a support group for families of children with congenital heart defects. I am looking forward to it! Everyone else is doing great. I am still home with the girls, Ashlyn isn't ready for day care yet. Saphyre joined Girl Scouts this week, which will be very good for her. Brooke is getting bigger and smarter each day, and is a great help to Mommy, but can be a sassy brat when she wants too! We wish everyone a very Happy Thanksgiving, this year we have a lot to be thankful for!

Two months old and doing great!

Ashlyn continues to do great each day. She is gaining weight great! At discharge (11/7), she was 8lbs. 8 oz. At her cardiologist appointment (11/12) she was 9 lbs. 7 oz. and at her well baby check (11/18) she was 10 lbs. 1 oz.!

The cardiologist appointment on 11/12 went well. She had a chest x-ray, EKG, and Echo done. There is till a residual leak, but only one now, that they are monitoring. We go back on 11/26 for a check-up.

Ashlyn is two months old now! We had her well baby check on 11/18 and everything looks good. She had her immunizations and we also talked about the Synergist (RSV vaccination). They said they have trouble getting it there because it is a $200 vaccine so hopefully she can get it at the cardiologist. They need it every month during RSV season. Dr. Rodriguez also hooked her up to the pulseOx and she was running 98/99 for oxygen saturation! Way up from 80-84 pre-surgery.

She is so smiley now and coos and "talks" with us often. She has changed so much already and loves attention. If I don't look at her when she is eating. she will make little noises to get my attention. She also has started to find her fingers and chew on them.

Ashlyn is eating a lot now. The last few days it has been 3 ounces every two hours sometimes three hours. But she has been sleeping great through the night, 6-7 hours. So I would much rather feed her every two hours than get up twice a night! Her scar is healing nicely as you can see below.

11/7/18 Day 11 DISCHARGE DAY!!!!

Yes, you read that right, Ashlyn was discharged today! VSUC test was negative, bacteria and urine cultures negative so she is home. I will post more tomorrow, I had my tubal done earlier and I am pretty sore. Thanks for all yout thoughts and prayers, my baby girl is sleeping peacefully in her own bed!!!

11/6/08 Day 10

Ashlyn's blood and urine cultures are still negative, but not final yet, yay! So she may be discharged tomorrow. She had a good night and day, ate well. her night nurse said she has wanted to be held a lot. I think she is just so done being there and wants the attention she had when Mommy was there and from all of us at home. She is probably so confused. If she is discharged tomorrow, we will have to get her late because I am finally getting my tubal done. no more babies for us! This was definitely the icing on the cake, never in a million years would I have thought we would go through this and I NEVER want to do it again. Ashlyn also has the VSUG test tomorrow where they shoot dye in her kidneys to make sure everything is okay. So fingers crossed tomorrow is the day and that the cultures are negative. Will Day 11 (Mommy's favorite number) be discharge day???

11/5/08 Day 9

Ashlyn isn't coming home today :( She has a UTI, and they did another urine culture today. She did seem off last night and I think this is why. But today she is still eating well, and at 3 ounces or a little more each feed. There were not any issues with the Echo and halter EKG when they discussed her in rounds this morning. I am happy she is still there to get all her issues resolved before she comes home. I don't want to have to go back to the hospital again. It was very sad to leave her today, considering I have been there since surgery and we have had her home for three weeks. It's hard being home without my baby, but I know this is best. I am attempting to upload pictures but the camera is not cooperating. i will also update eat post with the pictures I took each day now that I can download them. I will be heading back up to see her tomorrow and bring her milk, and she will be discharged probably Friday or Saturday as long as everything goes okay.

11/4/08 Day 8

The biggest news today is that Ashlyn may come home tomorrow. Everything is looking pretty good, she is eating well. The blood culture has come back negative so far, so whatever bacterial growth she had is more than likely gone from the antibiotics. They took her off the second antibiotic today. She will go home on a med called elapril which helps her heart work better. She will go back a week after discharge to the cardiologist. No news on the Echo today or the 24 hour halter EKG. She ate for times in the night last night, which is really considering that spanned 8 hours. Tonight she seemed a bit off. She took a long time to drink her 9:00 feeding, and she wasn't interacting with me as much. They gave her Tylenol right before that feeding because she was cranky. She may just not be feeling well, she had a small fever. We gave her a bath and dressed the top of her incision. It had become red and irritated from her chin and pacifier resting on it, so they ordered her a cream to put on it. I have mixed feelings about her going home tomorrow. I am leaving tomorrow anyway, and part of me wants her to go home too, but part of me wants her to stay and recover more. It is scary to think about all she has gone through and how careful we have to be. I am scared she isn't ready and I will do something wrong. But I know they wouldn't send her home if she was not ready or if it was real risky or if they thought I couldn't handle it. She will be 9 days out tomorrow and they said it would take 7-10 or 10-14 days to recover and a month to recover fully. Her stats have So we will see in the morning what they say in rounds.

11/3/08 Day 7

Ashlyn is eating a little better today. I have fed her twice, and will give her a bath at 4pm. They took her chest tube out and she is off continuous IVs, to see if she will eat better. So far so good, she has eaten close to her normal at every three hours for me. Her cultures came back positive for infection. They took another culture to see if the antibiotics has fought it off. Her Echo from yesterday showed mild narrowing of the pulmonary and a small residual leak, so it doesn't seem to be getting any worse which is good. Tomorrow they will do another Echo. She has a chest x-ray at 3pm and another in the morning to make sure fluid does not collect. Ashlyn is very smiley today, she also has been cooing and looking at her toys hanging above her. I hope the antibiotics are doing their job and now we are on the upside again. She looks really good for only being seven days post surgery, much better than she did right after. I also changed her diaper and picked her up on my own. It is easier now without the chest tube and continuous IV.

PM
She ate well again, about three ounces which is their goal. She has a 24 hour EKG monitor attached called a halter. After her bath she took a good nap before her next feeding. The pictures below are not great quality because they are from my phone. I will post lots more are the days I already posted an entry for when I get home and download from my phone. Just wanted to share how good she is looking. The doctor said she is clinically doing "very good" :) She is getting back to her normal self, especially in the poopy department, she had three today! Her cry still is not back and they may have a speech therapist come in to do a study. Her noises are getting louder so I think in time her cry will comeback too. There may be damage to the vocal chord nerves from the breathing tube, but that was a risk we needed to take to get her better.

11/2/08 Day 6

Today we were able to hold Ashlyn for the first time in almost a week! John was able to hold her before he went home, which is what we were hoping for. Brooke saw Ashlyn for a little bit too. The took her RA lines and pace wires out, so all she has left are IV lines in her hands and her chest tube. She did not eat very well in the night, but she ate a few times for me in the day. I was able to hold her and feed her too. She had her first poopy diaper too, and the catheter is out so she will have normal diaper changes now. She smiled at me a few times, which made me feel better seeing she hasn't smiled all week. They think she is dehydrated, which they have to do to get the chest tube to drain and may have an infection. As a precaution, they started her on two antibiotics, one very strong. They also did a urine culture and blood culture to see. She had an Echo done to check on the narrowing and residual leak. We should know more tomorrow.

11/1/08 Day 5

Today Ashlyn had another line in her groin taken out. She has no more lines in her groin. Tomorrow she may get her RA line taken out, which goes to her heart and her pace wires. We should be able to hold her after that. I hope so seeing John is here this weekend. They took her off the milrinone (helps her heart function better) today at 4pm. She is eating about every three hours, and has been taking 2 ounces or three ounces. They took the somanetics sensor off her forehead and she hasn't received oxygen at all today. She continues to do better and look better each day. John and Brooke should be able to see her tomorrow.