Day 702

Ava started having more problems today and her O2 sats went in the low 90s. We put her on O2 and gave her a nebulizer of albeturol and called the Lung Center doc. He put her on prednisolone until Thursday and she should get better within 24-48 hours.

Ava still is eating a bowlful of food through this. She hasn't stooled in a couple of days so we also gave her Senna to help with that. Hopefully that will help her with the gagging. It always seems like she is gaggy when she hasn't gone.

Thanking God for Ava being home and praying for her to get better asap...

Day 700

Ava's having a little trouble today. Her heart rate is higher than normal (150s- 170s) and so is her breath rate (50s - 80s). Her oxygen saturation seems fine between 97-100. She is definitely belly breathing. She shows no other signs of being sick ie. runny nose, extra trach secretions. Hopefully she will be better tomorrow. She is very happy and eating a bowlful of food every time we feed her.

Thanking God for Ava eating and praying that she is back to her prime...

Day 698

Today we went to Syracuse to see Ava's GI doctor, whom we haven't seen since June. While we were in the waiting room, we spoke to a woman who's nephew was born at 24 weeks and had a shunt in his brain and had sever CP. He died at the age of 13. We can't help but feel extremely grateful. She said that Ava was highly functioning. What's interesting is she hasn't been classified as that because she doesn't have CP but is a normal child on a vent despite her birth at 24 weeks. God - We are so grateful to you!! Family & Friends - THANKS for all the prayers!!

The GI (gastroenterologist) thought she looked great. Ava ate almost a whole bowlful of food for him. She even licked her lips and really showed off. He said we should be able to get her to do a swallow study so I called the speech therapist from Children's when we got back home. Hopefully we should hear from her soon. The doctor is also going to keep her on Pediasure since she is doing so well on it.

We made it back to Buffalo at 2pm, so it was a pretty good day. We also got to use the kid cart and it was amazingly easy to push. So thankful for that as well.

Thanking God for all his great blessings on us and praying for Ava to be vent-free and eating solid foods...

Day 696 - Ava's 2nd Christmas!

We had a crazy day, but it was great. Ava is all over the place and being we had no nurse today, it's interesting to be with all three kids and make dinner and open presents (which involve downloading software from the computer). I am certainly not complaining though. I read over last year's Christmas post and how much I ached for Ava to be home.There has been a transference of stress for the care of Ava from the hospital to us and thankfully her need for care has diminished significantly. It still is a struggle but a happy one. She still needs prayers though. Please pray for Ava to be off the ventilator, her lungs to grow and for her to eat.

By the end of the day, I think Ava got into the whole unwrapping presents. Or she just goes along with her crazy family. She got a baby doll and she actually hugs and treats it just like we treat her. She signs baby doll and she even signed that the baby eats. Hopefully this will help with her feeding by mimicking eating with her doll.

She ate some pudding this morning with no gagging, but had one small spit up incident. I was behind in her feeding by 30 minutes so if we were to feed her at our Christmas dinner, we would get some gagging and spit up. So she just sat there and showed off for Grandma and Grandpa. I am trying to get her to sign "Grandma" & "Grandpa", but she actually signs "love" and looks at them. ;) Aw, my sweet baby.

Ava weighs 11.8 kg = 26.01 pounds. She's back up to 26 pounds and this time with the Pediasure! Go Ava!

We got the kid cart on Friday so this was a great Christmas present. We will hopefully be able to carry Ava around much easier. Hm... Maybe we can go on a test run tomorrow?

From our Family to yours... Merry CHRISTmas! Thank you for your continued support and for reading Ava's blog.

Thanking God for our family being together and praying that we have many more special days together...

Day 690

Ava was able to go down on her vent settings today to 19 on pressure control.She also is finally down on her PEEP to 8. She was on a very high PEEP of 9. We are all around a peep of 5. She is doing great with these new settings.

Ava weighs 11.55 kg. She seems to be stabilizing. Still having spit ups, but we actually had none today. Eating spoonfuls here and there.

Thanking God for Ava's success and praying for her to eat and drink orally...

Day 686

Today we had ENT. He said she looked great and he even heard her talk. With her being able to talk, that should mean her vocal cords are in good shape. In the spring, she will have to be put under and have a scope down to see how her trachea and vocal cords look. We are coming back in 3 months and if her vent settings are down, we will probably go down in trach size. We can't have the cap for her to speak until her trach size is smaller since the cap would be too large for her.

We are still going off the vent for 15 minutes twice a day, and she is doing really well. The Lung Center said that her xray looked like what they thought it would look like. It's better, but not perfect. Her right lung is not as far over as it was into the left side as in the past, so there is an improvement. I will call once a week on a Monday, and hopefully we will go longer off the vent. They have also decided to wean her a bit more on the vent. VNA will come out to make those changes.

Thanking God for Ava's progress and praying for continued success...

Day 685 - That's what Faith can do...

We had another exciting day today.If you saw the above video, you know that Ava started to crawl today. She has been pushing herself forward a bit with both legs but today, she started moving both her legs and arms; one at a time. We are so excited and she is so happy to show off. She also got her Synagis shot to protect her from RSV. We had to weigh her and she now weighs 11.4 kg, but this was in the morning, not at the normal evening time.She did spit up twice today and it was a decent amount. She also was very gaggy eating today. Tonight, I did get at least 5 spoonfuls of food in her mouth that she ate. So that is good and that will add to her calories. She is so amazing. It would be wonderful to have her eating baby food. Every day is a step forward to doing that.

Thanking God for Ava having the ability to crawl and praying for Ava to eat and grow...

Day 684 - Without a vent...

Today started out rough, but turned to pure joy! We had our Lung Center appointment, and even I, didn't expect to have these awesome results. God is so great! From where we were a year ago... All I can say is WOW! Ava's nurse and I fully updated the Doc and RT and they knew they were going down in vent settings. They also decided to do what I hadn't expected - to see how she would do without the vent. They took her off the vent and her O2 saturations actually went up and her CO2 levels went down. Her heart rate stayed the same and she was very comfortable breathing. She wasn't breathing with her belly and she even breathed better standing. We continued until 15 minutes. She didn't get tired, and she looked at us very curiously as to why she couldn't pull the vent off or why we didn't hurry to put it back on. The doc wanted to get another xray since we hadn't had one since April and after they reviewed that, we are going to go down in her Peep by 2 after they review her Xray on Thursday.

We went up to get the Xray and I actually got to see it after. Her left lung looked the clearest I have ever seen it. It really looked amazing. The Xray tech said we could wait to talk to the doctor to get the results, despite what Lung Center said about Thursday. We waited over an hour but we didn't hear anything so we left. We should hear on Thursday. I did run into the tech and she did say she wasn't a doctor but she saw what I saw. We can't wait to hear the results!

Thursday is ENT, and he is a wonderful doc will be very excited to hear the news. We have to keep a watch on Ava's weight, but they do believe that she is being over ventilated since she went up in sats when she was off the ventilator.

We didn't tell Anthony until he saw that Ava was off the vent. The video above is the surprise he got. All I told him is that we were probably going down in vent settings later this week and her Xray looked good. This is definitely the day that the Lord has made. Let us be glad and give thanks in it!

Thanking God for Ava's ability to breathe and praying for her to be fully off the vent in 2012 and to be able to eat...

Day 683

Ava is starting to crawl a bit and she really loves to stand. She can pretty much stand holding onto something all by herself. Tomorrow is Lung Center and Thursday she goes to ENT. Hopefully tomorrow we will go down in vent settings again. We are really hoping that we see her get off the vent in the next couple of months. She really needs those tubes away from her so she can start walking and crawling. She also pulled her "G" tube out twice today.

Ava weighs 11.60 kg = 25.57 pounds. She went down in weight from the 11.75 kg. I will probably call GI tomorrow and see if they want to go up on her feed. They still want to go up on her feed, but I think she needed another week to adjust to going up to 180 ml. She also is doing so great eating. She is actually moving her tongue around enough to have her food go back to her throat and she swallows. This has just started happening the last couple of days. She also tasted her first candy cane today. Her sisters would lick their candy canes and then she would open her mouth enough to let the candy cane in. No gagging either.

Thanking God for Ava's amazing growth and praying for a great Lung Center appointment tomorrow...

Day 673

Today Ava had a blood draw for Immunology to see if her DTAP shot is active in her blood. They actually had to stick her 4 times to get the blood. My poor baby! We also went to the a nutritional doctor who is going to contact our pediatrician and GI doctor to put her on two nutritional supplements. He believes these two supplements will make a huge difference in her tummy and help her not to spit up. We should hear about this early next week if the docs approve.

Thanking God for Ava's growth and praying that her shots work and her tummy gets stronger...