Day 790

We don't have a nurse Friday night, Saturday night, Sunday day. Thankfully our incredibly awesome nurse & friend from the ICU is working Sunday (she reads this blog hee-hee) and Monday night I had to beg our nursing agency to put our night nurse on an extra night. Thank goodness because we found out today that we have to be at Children's at 6 am on Monday morning. Which means we have to leave at 5am, which means we have to be up around 4am. ;) So much for sleep this weekend. This is one of the major reasons we need Ava decannulated sooner rather than later. We can actually sleep at night! Maybe it wouldn't be sound because I would still have a pulsox hooked up to her for a while, but with our lack of nursing for almost a year now, not to mention the agency being rather rude almost daily, it would bring great pleasure to eliminate that huge problem. I should calculate how much time I spend on the phone with them in a week. Maybe I really wouldn't want to know. lol.

I'm a little nervous about the bronch at the hospital, being that the hospital is still busy, and I really don't want Ava to get sick. Please pray that everything goes well and we can find out her trachea looks great to go ahead with decannulation in the next few months. I will probably drive all the nurses/docs crazy making sure their hands are clean. But it would be worse if we were back there. Then I really would be sanitizing everyone and thing...

Ava is doing really well with her orthotics and sneakers. She's getting very close to standing by herself. She is also eating a whole organic pack of food at one feeding time. We are also going to go to GI in Syracuse and their feeding clinic in May to maybe see if they have any more advice about getting her past the texture of solids and not gagging.

Thanking God for Ava's bronch on Monday and praying that she is safe and we have great news...

Day 787

Today we went to Cardiology and Ava had two tests done. One was an echo and they found that the hole in her heart has closed. So now she can go deep sea diving and fly a jet when she is older. ;) Awesome news! She has come so far! Do you remember on Day 12 when Ava's hole in her heart had reopened? She is doing incredibly well. We only have to go to the cardiologist a year from now. He affirmed that Ava is completely a miracle and that he wishes he could replicate myself and our family. He said they have moved to the back of the bus now when it comes to the "bus load" of doctors. It's awesome to think that one of the body's major parts is now no longer much of a concern for us. Praise God!

We have went down to 220 ml of food for Ava and are keeping the feeds at 4am, 12pm and 10pm. The GI doctor also recommended to go off Eryped for 5 days and it should help it work again to help Ava's digestion since she has been spitting up.

I also spoke to Lung Center yesterday and we have to wait 2 weeks to start going off the vent at nap times. Which of course ends up being the Monday after Easter and they are off that day.

Ava also is back to weighing 12 kg = 26.46 pounds. She is 85 cm long = 33.46".

Thanking God for Ava's amazing progress and praying that she will be vent free and trach free a year from now...

Day 785

The next couple of weeks are busy. Ava has Cardiology this Tuesday, her Bronch next Monday, Immunology on Tuesday. She is back to spitting up but she is on 250mls, 3 times a day, so I don't know if it's because of the increase or just her again. We have been feeding her while she is asleep the last couple of days because she is spitting up at every meal.

Ava also got her orthotics and new sneakers on Thursday. It was the first time she has been in a store. We also went to Bath and Bodyworks. She had so much fun and kept signing "more". She seems to be doing better with her feet since we got the orthotics.

She still hasn't started talking with the valve, but she loves to talk with the vent when she is going to sleep. We really need a therapist that can help us with this. Our speech therapist didn't know what the passy-muir valve is, so I am hoping that she will learn more about it.

Tomorrow I will call Lung Center and I hope that we can start weaning her off the vent during nap time. We shall see. We didn't have a nurse last night or today and we won't have one next Friday and Saturday night and Sunday day. If anyone knows a great Medicaid nurse, we have that ability now to take private-duty nurses, please let us know.

Thanking God for his endless opportunities and praying for energy, and Ava to be off the vent all day...

Day 782

Today we went to ENT and Ava got a prescription for a Passy-Muir Valve. This is a speaking valve that helps her to use her vocal cords as well as better swallowing. The doctor also thinks that she should be decannulated by the end of summer. The thought of her being free of her trach is unbelievably exciting. No more night nursing, no more need to stay up all night-every week! Maybe it would also mean she could eat easily! I could drive all three of my children around without having someone next to Ava. Can you imagine - being able to drive my children around - all of them together - by myself?! I could actually go to the store when we need something and not have to wait until we have a nurse or my husband is home?! Incredible!

The doctor also wants to do a bronchoscopy to check out her trachea before we are at the point of delaying her decannulation. We scheduled it for April 2nd, before I get super busy with the Taste of Buffalo.

We were hoping she would speak but she isn't a big fan of the valve being on. We are looking forward to the day she can say mama and daddy, Ali, Ari and Ali wants Ava to tell her, her favorite color. Ava breathes very well with the valve on, despite you can only breath in, not out. If you can take her mind off of it being on, you can get her to keep it on for at least 15 minutes.

Ava also got her IVIG on Wednesday. She was completely terrified of the needles and she had to have blood drawn. We go next week to Immunology and hopefully her blood levels are perfect and she will no longer need infusions anymore. Ava is so strong and it takes three of us to put an IV in. We should find out this week what the results were.

Thanking God for Ava's lung growth and praying for her trach to be gone by the end of summer...

Day 778

We had a great week and weekend with Ava. The weather has been incredible and Ava has loved every minute of it. She has done great this week being off the vent 10 hours a day. I am hoping tomorrow that they will allow us to start naps, but the RT said that doesn't happen that quickly. We know that Ava is ready.  We are still working out how to give her nebulizers and puffers without the vent.  Buffalo Oxygen does not have any easy answer for some reason.

Ava got her last Synagis shots for RSV last week as well. Hopefully we can get the shots again next year. She is getting her IVIG on Wednesday and we are going to ENT on Thursday. Next week we go to Cardiology, the week after Immunology, and after that is Opthamology . Quite a few weeks of appointments but it's either her three months, 6 months or annual. Love saying ANNUAL appointment. That's for her eyes - it's so unbelievable that she was so close to having eye surgery and now she only has to see the eye doctor annually. Hopefully he will say that she no longer needs to see him. We are so blessed! Ava shows us every day how smart she is. Some nurses that have seen other 24 week babies can't believe how incredibly smart Ava is and how well she can communicate.

Thanking God for blessing our family and praying for Ava to be able to come off the vent during nap times...

Day 772

We got approved today for Ava to come off the vent when she wakes up in the morning until she goes down for her nap (5 hours) and from 3 - 8pm for a total of 10 hours a day. Yeah! We also changed her feed rate to 250 mls 3x times a day. We went up because she went down to 11.75 kg with her weight. We also eliminated the 3pm feed because she most often would spit up during that time. We moved her 4th feed to at night once she's asleep just until she is fully up to the 250 a feed. We are going up 10 mls every 2 days.

We are also going to see the Syracuse feeding clinic whenever we go to GI there. It really seems like the gag that is triggered by anything solid isn't going to go away anytime soon. She has been eating stage 2 for a long time, and Ava really wants to eat solids and puts foods in her mouth. Her gag though makes her vomit up anything that is in her tummy until she can get that solid out of her mouth.

We are looking forward to this week with Ava since we are having great weather. She really loves being outside.

Thanking God for Ava's lung growth and praying that we no longer need the vent & trach this summer AND Ava can eat solids...

Day 770

Well it's been a while for a post, but that's because things have been pretty great. She is off the vent 6 hours a day, and while she is off, she is scooting around in a new walker, crawling, pulling herself up on our couch & table. She has even been on the swing a few times because we have had nice weather. 

Ava was sized on Thursday for orthotics that will fit into her sneakers to help her not turn her feet out so much. They think that she doesn't have a lot of strength yet in her upper thighs so with these and possibly some bands around her legs, we can strengthen her legs without going with longer orthotics.

On Monday, I will be calling Lung Center to hopefully go all morning and all afternoon off the vent. Ava is doing so good without it. No problems at all. She also is eating really well. Opening her mouth wide and swallowing. That will definitely be hard to get her to eat more solid foods. She is only spitting up once in a while. I'm wondering if it correlates with when she needs to be suctioned. Tomorrow it's supposed to be a nice day so we are looking forward to taking Ava out. She was pointing all day today to go outside but it was too cold.

Thanking God for Ava being off the ventilator and praying that she can eat solid foods...