6 weeks old

Ava turned 6 weeks old yesterday. What a long and tedious 6 weeks it has been. An emotional roller coaster to say the least. Just when I think we are doing well, we take another dip. Yesterday was one of those big, big dips. Ava had a really rough night Monday night with one episode after another. By morning the doctor decided that she needed a break and something had to change. After increasing her Dopram without much change, he put her back on Sipap. It was a hard pill for me to swallow. At six weeks old, I really thought we would be doing better than this. And we were so close last week. She was down to two liters of flow and getting feeds gavaged in preparation for breastfeeding. Now, just holding her would be a huge ordeal and breastfeeding won't be happening anytime soon. When things are going bad like this, I find it very difficult to cope. I can't change any of it and all I want to do is make her better. It kills me to not be able to do that. I want her thriving and home with me. But all I can do is be there for her and keep pumping. It's a strange reality to have, knowing that she WILL get there, because Travis did. So I know better than most people that it WILL happen, but yet, my emotions tell me that we are never going to move forward. She has done better since being put on Sipap, and I hope that she can regain her strength and be off of it soon. Please continue to pray for little Ava. She really needs to figure out this breathing stuff so that we can move forward.

Monday Update

Things have been pretty much the same all weekend. After I posted that wonderful update about Ava, she took a few steps backwards. Friday night she had MANY apenic episodes so they increased her flow back up to 3 liters and put her feedings back on the pump over an hour. Because of these changes, we have to wait to start oral feeds. She is apparently not ready. It is so frustrating to move backwards when we should be moving forward. I was SO excited about the new changes and it just makes the let down that much worse when it doesn't last. Ava is still having a lot of episodes, and it's hard not to wonder when she is going to outgrow this. She IS gaining weight finally which is wonderful! She is up to 3lbs 8oz as of last night! Eat, Breathe, Grow! That's our motto right now and it seems very slow. Since Ava is 6 weeks old tomorrow, she will be having an eye exam today. I am not really expecting anything bad as she has not been on very much oxygen if any at all.

Unfortunately, this weekend I started to not feel very well. I am not sure what is going on exactly but last night I decided it would be best not to go visit Ava. It was SO hard for me to be away from her. Today I am not feeling much better so I may have to stay away another day. It is killing me to be away from her but I am trying to just rest and drink tons of water and take lots of Vitamin C so I can get better as fast as possible.

Moving right along...

I had a wonderful visit with Ava tonight. She is such a beautiful little girl, I just can't get enough of her! Today she is 32 gestational weeks. This means she gets to start eating by mouth! Tomorrow will be the first day that I get to breastfeed her "for real", although we have been practicing for a while now.

Ava has made quite a few steps in the right direction. First of all, she is now 3lbs 5oz! She really is filling out and looking so much more like a "real baby" now. She does not seem so fragile and she is fitting so well in her preemie clothes. Dressing a little girl, MY little girl, is SO much fun! Her feeds are also being gavage fed now, which means they go in with gravity, which only takes a few minutes. It's fantastic that her tummy is able to tolerate this as she is moving towards oral feeds. Her liter flow was decreased to 2 liters today which is also a great step! She has been tolerating that fine and is still only requiring 21% oxygen (room air) most of the time. And last but not least, she is regulating her temperature completely on her own now so she no longer needs her isolette to keep her warm. She should be making that transition into a crib very soon! What a big girl! Without further adieu....PICTURES!

Misbehaving

Ava is pretty well known in the NICU as a little trouble maker. She is very dramatic when she has her "episodes" and she knows exactly how to get attention. There has not been a whole lot of new information to report the last couple of days. They have been weaning one of her medicines that helps her remember to breathe and it is looking like maybe she is not tolerating the wean so well. She has had more epiosdes the last couple of days, so hopefully she can move past that without having to go back up on her medicine. One day, it will be nice to know that Ava does not need meds to help her remember to breathe! She seems to be hanging out right around 3lbs right now with no significant gains. Her feedings are running over 30 minutes now rather than 90 minutes. They do this to get her little belly ready for taking her feeds by mouth, which should start tomorrow, assuming she starts getting her act together and does not have so many apenic epiosdes. Ava is so much fun to dress up now! She is like a little dolly and I cannot believe how well her preemie clothes fit her! It is so adorable! She should be moving into an open crib in a few days because she is maintaing her temperature so well! I guess there is really not much more to report, but I figured I would not keep you all hanging!

I'm a Big Girl Now!

Ava is movin' up in the world! Last night, she got to wear her very first outfit! Now that she is getting bigger, she is more capable of regulating her own body temperature, so we are able to turn down her isolette temperature and dress her! As long as she continues to be able to regulate her temperature, she will be moved into a less "fancy" isolette in the next day or two. We like less fancy, because it means our girl doesn't need so many extra's...and in the NICU, that is a really, really good thing!

In other great news, Ava's flow has been decreased from 3.5L to 3L and she has been doing well on that (still on 21% oxygen). Her feeds have been increased from 26mls to 29mls every three hours. That is just one tiny ml short of an ounce! On Friday she will be 32 gestational weeks and she will start working on oral feedings. We have already been doing "non nutritive sucking" at the breast, and last night she did GREAT! She tried to nurse for 20 minutes! She has a great suck but we need to work on her latch. I am so in love with this little girl and I cherish the time we get to spend together.

SO Much to Celebrate!

Last night I had a really amazing night in the NICU, for a few different reasons. I almost don't even know where to start. I guess let's start with the BEST news! Ava had a head ultrasound yesterday morning and I was worried sick about it all day long. Her first head ultrasound came back showing some bright spots on her brain, which I was informed could be normal, or it could be a sign of Periventricular Leukomalacia (PVL). Obviously, as a mom, I instantly think the worst, so I was terrified. I almost didn't even want to know the results from this most recent head ultrasound, but I am glad I asked because it came back COMPLETELY NORMAL! Praise the Lord!

The next best news is that Ava weighed in last night at THREE POUNDS! And not just three pounds, but three pounds and one ounce! I was so excited to see those numbers when we weighed her. Three pounds was such a huge milestone for Travis. He was over 2 and a half months old before he got to three pounds, so it is pretty exciting to see Ava get there in just one month.

I have to say, I am so very thankful for nurses who not only take great care of my daughter, but who truly, genuinely care about ME as well. Ava has a nurse who is absolutely amazing. She is so caring and sweet and she even sends me pictures on my phone in the middle of the night! Talk about awesome! Last night she sat and talked with me for a long time. I bascially poured my heart out to her and she listened and gave advice. I told her how hard this is and how angry I get that I am doing it again. Usually, I just put on a smile and when the nurses ask how I am, I tell them I am "pretty good". But last night, I was able to talk about how I REALLY feel, and if nothing else, it was just nice to be able to get that out. She was very encouraging and had some great things to say. It really is nurses like that who make the NICU experience a little more bearable.

Ava has a little neighbor in the NICU who was a 26 weeker. He is a little over a week old now and I have been wanting to reach out to his parents for a few days now. I know how challenging and isolating the NICU is. Especially when you don't know what to expect. As I was leaving the NICU last night, I ran into them in the hallway and was finally able to reach out to them. We talked for a while and exchanged phone numbers and emails. I truly hope that it helps them to know they are not alone in this and that these little babies can grow up to be amazing, crazy, hyper kids like Travis!

My Little Beauty