Me Too You

Off the vent!

Ava came off the ventilator today and went onto just a simple oxygen canula. We are very excited to be able to see her face better. She is a swaddle girl, we have decided - she was snuggled up and resting happily all afternoon. More exciting news is that we will be able to hold her for the first time tomorrow. Maybe we'll dress her up in some pink stuff for the occasion :) 

Daddy's on duty

I have a little cold today, so I am not allowed to visit Ava today. Darn it! Jeff is going over to visit a little more today as a result. I am hoping to rest up so that I can be back there tomorrow. Daddy's report is that she is down to 30% oxygen on her vent and they turned the rate down as well, so they are thinking she may come off the ventilator entirely sometime today. Yay! From there, they would probably put her on CPAP (Ben and Lily were on this as premies) and then an oxygen canula. The nurses also put Ava on her tummy for the first time and she seems to really love it. Making progress...

Off the nitric and jet

Today was another great day for Ava. At about noon, she came completely off the nitric oxide and off the jet high frequency ventilator and onto a conventional ventilator. She looks so much more comfortable, although she is also off of her heavy-duty sedatives and is starting to wake up and realize what is going on. She is a big girl (compared to a lot of the premies in the NICU) and she fights the vent a bit.

At our nightly visit, Jeff and I actually got to help out. I changed her diaper and cleaned her eyes and mouth. Jeff helped the nurse change all of her bedding - quite an ordeal. We weighed her and she is now up to 8lbs 6oz, although a lot of that is probably water retention weight that she will shed as she starts moving more. These little things seem big to us right now - it is so nice to be able to actually do some things for her. We hope we'll be able to hold her soon and give her a bath - she needs it after 9 days of all those tubes, wires and stickers, not to mention still having anmeotic fluid all over her!

"Turning the corner"

Ava has had a really good day today. As of an hour ago, she was down to 46% on her oxygen (down from 100% - she was 78% last night, and 94% the day before – they have been coming down 2% each hour as long as she tolerates it. The amount of nitric oxide she is getting (the other main source of her support) is down from 20 to 10 (it was 15 this morning and they’ve been dropping it over the past day or so). And they have said they will be starting to feed her a very small amount every 8 hours through a tube (exactly what Ben and Lily did when they were very small)! We are sooooo excited! Her doctor this morning used the term “turned the corner” and we have been waiting for someone to use those words. Hooray!!!

Decorating Ava's "room"

Ava is being weaned off of her support little by little as things (her blood gas, echocardiogram, etc.) continue to look stable. I made her a nametag for her bed today and printed some pictures of us and Ben and Lily, so that we are with her all the time. That was fun! It was nice to do something that wasn’t medical for a change! My mom and I just went a little while ago and taped up the pictures all over her bed and she was continuing to do well. Yay! Jeff and I will go back in about an hour and hopefully things will be even better. The nurses and doctors keep reminding us that she could have setbacks, etc., so we are tempering our enthusiasm a bit. But it is going in the right direction and she’s looking so much better, that I can’t help but think she is getting close!

Happy Mother's Day!

I went to see Ava three times today. She had a rough night last night, so they decided to switch from one type of high frequency ventilartor (called an oscialltor) to another type (called a jet). She is doing much better and they have been weaning her down ever since! It seems to be the change she needed. I just got back from seeing her and she was opening her eyes and looking around – so cute! So I am happy. Thanks for the Mother's Day present, Ava. Hopefully we’ll be able to continue on this path and maybe she’ll be onto just a regular ventilator in a few days.

The nurses in the NICU made Mother's Day cards for all of the Mommys. Here's Ava's...

Jeff framed pictures of Ava for all the Moms here too - here is Ava's professional modeling shot:

Ben and Lily made cards for me too at their school. Very cute. :) Here are some recent pictures of them - they are getting so big.

Better!

Ava had a better day today – yay! This is the first day they have said “better” and not just “stable.” We are very happy. She is still critical, but is making small improvements and they are making small adjustments. We hope that she will officially turn the corner very soon. She did get a blood transfusion and actually had another one today. Her brain scan was not done, because she started to crash when they tried putting all those electrodes all over her head. But they did do a head ultrasound and found a very small bleed in the brain (I mean, very small, like a broken capillary in your eye), this is no big deal at all and will heal on its own. So they don’t think she ever had a seizure. They will do the full brain scan just to be sure when she gets better and can tolerate it.

I came home yesterday from the hospital. I was a bit sad, even though I was happy to see Ben and Lily. I miss going to see Ava whenever I want to and, because I am still on pain meds, I can’t drive so need a chauffeur. Oh well - luckily there are lots of people around. Jeff's mom, Sandy, flew in Thursday night - she just couldn't stand not to be here.

I have also been needing more and more pain medication - Jeff’s sister, Sonya, (she flew in yesterday from DC) is a general surgeon and she looked at my incision and confirmed that I have an infection in my c-section incision. Great – adding insult to injury here! Anyway, I was happy to have a doctor in the house, because I was able to get antibiotics immediately and hopefully I will be better tomorrow. She also came with us to see Ava today and we sat down with her doctor and went through everything. Sonya was able to translate a lot of stuff for us and ask some great questions. It helped a lot.

Small changes

Ava's last blood gas test came back looking good (yay!) and so they dropped her oxygen % from 100% to 92% on the high frequency ventilator. Hopefully she will tolerate that change. They are going to wean her very slowly. This morning, her doctor said that as long as she is on the machines, she is still very sick and that she expects at least 3-4 days before she can come completely off. It may be sooner, it may be longer – we will just have to see. Every baby is different. Then after she is weaned from the machines and doing well, she has to learn to eat. We are trying not to think about a particular date for coming home, because we know from our experience with Ben and Lily that it can just set you up for disappointment. It is better to just take one day at a time and be patient. We are not in a rush - we just want her to be 100% before she comes home.

A stable night

The night went pretty well – whew! Her oxygen saturation numbers did go down a little bit, but that was because they were fiddling with her blood pressure medication. She came up on her own – hooray! – and her numbers look great right now. They will test again at 11am and I think once they get a couple more good readings, they might start to slowly wean her off of all her support. I am in no rush though – I want her to be very, very stable before they try again.

Ava was opening her eyes a lot this morning and looking at me. We are really starting to believe this little girl is going to make it.

I am going home from the hospital today - I have stayed as long as they will let me. At least we live close by - I will miss being able to go see her easily any time of the night or day.

Fingers and toes crossed

Good news – Ava has been stable for about 12 hours now and we are hoping the trend continues through the night. Things are looking up right now and I just feel like she’ll be fine. Fingers and toes crossed! A lot of people have been asking if we can touch her or hold her. We haven't been able to hold her at all yet. We have been able to put our hand on her head though to let her know we're there. She is pretty sedated, so she doesn’t respond to the touching of her head. But if you touch her toes (like Jeff likes to do), she will wiggle her toes. I scold him for doing so, because she is so sensitive right now and I think it bugs her! The nurses agree with me. Anyway, constant pressure is best, rather than stroking. I am sure it does more for me than for us right now, because she is so sedated, but I like to think she knows that we are there trying to soothe her. Ben and Lily were similar in some ways when they were very, very young. But prematurity is a totally different thing than what she has and she is actually much more sensitive.

My parents are taking care of Ben and Lily. They are doing a great job. I am so thankful for that. I think that Ben especially is starting to really miss me – although they come visit for a little while here at the hospital each day – so it will be good to go home and be with them. And we live only 2 minutes from the hospital, so it will be really easy to come and be with Ava too while she is still here. Ben and Lily aren’t really asking questions – because I don’t think they understood the baby thing to begin with! They just say “Mommy sleeps at the doctor” and accept it all pretty easily. We haven’t really talked to them too much about Ava, because we have been unsure about when she is going to come home, etc. The first day we told her they have a baby sister named Ava, but that’s about it. Luckily they don’t know what it is “supposed” to be like, so they don’t know the difference.