Wednesday, August 31, 2011

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, August 29, 2011

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.

Friday, August 26, 2011

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!

Thursday, August 25, 2011


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!

Tuesday, August 23, 2011

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.

Sunday, August 21, 2011

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!

Saturday, August 20, 2011

Friday, August 19, 2011

Month in Review

Ava is one month old today. She is having a really good day to celebrate! She had an awesome night so the doctor decided to decrease her flow from 4liters to 3.5liters. When I called a few minutes ago her nurse said she was doing well but seemed to be a little bit more tachypnic (breathing fast). She just can't seem to get it quite right. Either she isn't breathing or she is breathing too fast. So hard to learn to breathe for these little preemies. But she will get it right eventually. The plan was to decrease her flow to 3liters after 12 hours if she was tolerating it, but most likely if she continues to be tachypnic that won't happen. She is up to 2lbs 15oz! Just one ounce shy of 3lbs! Yahooo! She is also done with her antibiotics so now she is just getting two meds to help her remember to breathe, vitamins, and fortified breastmilk. Pretty good for a little preemie princess!

So lets take a quick look at what our little Ava has been through this past month. To most, time is flying, but to me, living it day in and day out, it feels much longer than a month. Ava was on CPAP when she was born, shortly thereafter she was moved to the high flow cannula. She was doing amazing for a few days. Slowly she started to deteriorate. The doctor noticed he could hear a hear murmur. After an echo, it was discovered that she had a LARGE PDA. Two rounds of Endocin were used on her to try to close it but to no avail. At 8 days old, Ava had surgery to close her PDA. She was placed on a ventilator for the surgery. The surgery itself went well, but not long after, infection set it. She had an infection in her lungs, her blood, and in her incision. This made it difficult for her to come off the ventilator. She finally did after 8 days of being intubated. Since being extubated Ava has been very up and down. She forgets to breathe often and drops her heart rate and her oxygen saturations. Two days ago she was put back on CPAP and recieved a blood transfusion. The blood seemed to help her immensly and she is back on the high flow at 3.5 liters! She is getting 26ml of breastmilk every three hours and in a week she will get to start learning to eat by mouth! Here are a few pictures of the last month!

Thursday, August 18, 2011

Isn't she Lovely?

I am so proud of my girl! She had a great night last night so the doctor decided to take her off the CPAP and back onto the high flow at 4 liters (she was on 5 liters before). It appears as though she just REALLY needed that blood transfusion. As my sister pointed out, she is like a little vampire, just needs blood to get her lively again, haha. I am so happy that she is doing so much better and I can't wait to snuggle her tonight.

Last night when I went in, they removed her CPAP so they could massage her head and give her nose a break. She was doing SO great with it off that we even got to give her a bath. She was so wide eyed and alert the whole time. I loved it! She also got weighed and is now 2lbs 14oz! So close to 3lbs!! Hopefully she will get there by the end of the week! Today I was looking through Travis' NICU Journal and found that he was 2lbs 14oz at 2.5 months old. Amazing how much bigger Ava is! Her feeds have been increased to 26ml every three hours. So that is almost an ounce (30ml). Hopefully with the increased feeds she will just gain, gain, gain!

Wednesday, August 17, 2011


Have you ever watched a show on TV, maybe the Discovery Channel, or a 20/20 Special, that was so amazing, or sad, or traumatic, or whatever else, and thought to yourself that it could never happen to you? That it was only something that happened to those people on that show. Sometimes I feel like that is my life. That I am those people. MOST people get pregnant, and 9 months later they bring home a healthy baby. That is obviously the expected outcome, or else people would probably be a lot more hesitant to have babies. Sometimes, even those healthy babies end up in the NICU for a day or two, or even a week. But most people don't spend the first few MONTHS of their babies lives afraid and not able to truly be their Mommies or Daddies. I think that we are all born with that feeling of being invincible. Of not thinking that bad things can happen to us. If we expected that all of the horrible things that could happen, WOULD, then we would live our lives in fear. It is what protects us from that and allows us to go about our daily lives, not being afraid of getting hit by a bus, or having a heart attack, or getting struck by lightening, or having our baby born prematurely. In a lot of ways, I have lost touch with that feeling of being invincible, and when you no longer feel that way, the world becomes a very scary place. I don't know exactly what the point of this post is, except to say that we are NOT invincible, but it is ok to feel that way. It is ok to read this blog and feel thankful that it is not your life, and that you have healthy, beautiful children. In fact, I HOPE that it makes you feel that way. I would not wish this journey on anyone, and I know that a few people who are reading this right now HAVE been here, and have lived this life.

Onto Miss Ava, if you missed my post earlier this morning, it is just below this one. She is now back on the CPAP. She is also getting a blood transfusion. When I called to check on her, her nurse felt very strongly that the blood was going to help her a lot. I really hope that she is right. I know it helped Travis a lot every time he was transfused. I will keep you all posted but I am really hoping she has a short stay on the CPAP and can be back on a cannula soon. Here are the promised pictures.

Well this WAS going to be a good update...

But I guess I waited too long. Things change so quickly. I got a call from Ava's doctor first thing this morning telling me they are going to put her on CPAP because of all of the episodes she was having last night. She can't figure out why she is having so many and she has done a third workup to check for any infections but does not think that Ava is sick. She had SUCH a great day yesterday, only having 1 epidsode all day. I was so hopeful that she was starting to decrease these episodes so she could move forward. Last night when I visited her she was so happy and calm and beautiful and doing so well. We snuggled for over an hour and it was pure bliss. So this morning, it's a tough pill to swallow to hear that she is moving backwards. I know that CPAP is not the worst thing in the world, but it's definitely not PROGRESS. Of course all of this is happening now, when I can't be with her during the day. I am so angry that she is struggling so much and just want her to move forward and get bigger and better every day. I am sorry I have not added pictures lately, right now I just don't have the energy. I will try to add some later on today. Please pray for Miss Ava that she can remember to breathe and not be on CPAP long.

Tuesday, August 16, 2011

2lbs 13oz!

Finally! Ava has gotten over her little speed bump of 2lbs 12oz. Three times she hit 2lbs 12oz only to lose weight and then gain it back, but she just could NOT seem to get over that hump. Today she is 2lbs 13oz, so I hope it is just UP from here. She is so close to 3lbs. It took Travis 12 weeks to hit 3lbs, so hopefully she will do it a little quicker!

Ava is 4 weeks old today (she will be a month on Friday). Whenever I think about how long we have been here, I wonder how much longer it will be. That is a question I hear a lot. Do they know when she might come home? Well, it's not a question I have asked, because I learned better with Travis. The doctors don't know, the nurses don't know and I don't know. Only God knows...and maybe Ava ;). I had hoped she would come home around 35 or 36 weeks, but that was when she was doing SO well. Now I am shooting for her due date, which is about 2 more months. But the reality is that I have no control over that. I just want her home as soon as she is ready, and I hope that is sooner rather than later. The requirements for Ava to come home are that she needs to eat (by mouth), breathe, and grow. So far, she is taking her time on all three of these. She is breathing, but stops when she doesn't feel like it anymore, she seems to be growing now, but back and forth doesn't work, and she is starting to learn to breastfeed, but so far not much progress has been made there, but that is ok because she won't ACTUALLY start nursing/bottle feeding until 32 gestational weeks. Right now she is 30.5 weeks. So when you look at it that way, we have a ways to go still. And it's impossible to know how quickly she will do these things. Girls tend to do better than boys so here's to hoping that she proves that right! I want nothing more than to have my babies at home together, where we can be a real family.

Monday, August 15, 2011

My new Favorite!

This is my new favorite picture of Ava. I looooove it! And I looove her! There really is not much new to update on. She is still doing more of the same. Lots of episodes. She needs to outgrow this. She also needs to GROW in general. Her doctor is quite stumped as to why she is not growing. They have her maxed on calories and volume, so we are expecting her to grow and it is just not happening. She is currently at 2lbs 12oz.

Sunday, August 14, 2011

Is this really happening?

Having a micropreemie and spending months in the hospital is something I would never wish on my worst enemy. I love my babies so much and would never trade them for the world, but watching them struggle and suffer the way they have is just unbearable for me as a mother. After Travis came home, I prayed to God that I would never experience anything like that again. It was traumatic and life altering and painful. It was also rewarding and amazing to see my son turn into the beautiful little boy that he is now. I have said to NICU mom's who have done this more than once, "I don't know how you do it more than one time. I could not handle it". And here I am, doing it again. I realize it IS different this time, and Ava is doing much better than her brother was at this point, but so many things are the same and so many things are not the way they were supposed to be. Today as I was holding Ava, staring at her perfect little self, with a feeding tube, cannula, IV's, temp probes, monitors, etc, I thought to myself, "Is this really happening right now? Am I really sitting here AGAIN, holding my TINY baby, praying for her strength, watching her numbers rise and fall? Really, God?" I know this is how it is supposed to be, but I don't know why. And that is probably not something that I will ever understand.

As far as a medical update goes on Ava, she is pretty much the same. We are still struggling with her lack of determination to BREATHE 100% of the time. Her lungs really are not all that bad, and when she does breathe, she only needs about 21% oxygen, which is just room air. But she so frequently forgets. This morning her doctor told me that if she keeps this up, he will have to put her on Sipap, which is the breathing support she was on before her surgery. Apparently her night was quite rough, but so far her day has been much better. I held her for about an hour and a half today and she tolerated it well. Another frustrating is her lack of weight gain. She lost 2oz last night and is down to 2lbs 10oz. Maybe my expectations were too high but I was really thinking she would be a little bit more stable and bigger by now. I know that she needs to grow and mature in order to be able to breathe better, so this is really important. They did a septic workup to see if she is sick but the doctor doesn't think that is the problem. I guess she just needs time. Patience is not my strong point. Although you would think I would have learned it while Travis was in the NICU, but you would be wrong. If anything, I became even more impatient.

Friday, August 12, 2011

The day of Threes

Ava is 30 gestational weeks today. She is also 3 weeks and 3 days old. Kinda crazy right?! I thought so.

Well our little miss is quite the drama queen. I am really ready for her to stop this monkey business and get serious with her breathing. She is having many many apenic episodes, some that require vigorous stimulation and others that require bagging and oxygen. I keep hoping it will improve, but every day is the same or worse. They added a new medication yesterday and that seemed to help for a little while but she was back at it by the night shift. She is also not really gaining weight. She is up to 2lbs 11oz but can't seem to get above that. They have increased her breastmilk to 26 calories/oz so we will see if that helps, or just becomes more difficult for her little belly to tolerate. All of this stuff is normal preemie stuff, but normal does not = easy. There is really not much else new to report with Ava today.

Tomorrow my mom has to leave. I am really struggling with this. I could never even explain how much help she has been. Quite frankly, I am very concerned with how we are going to survive without her. She cooks, cleans, takes care of Travis, washes my pumping parts, . Not to mention the emotional support she provides. She truly is amazing and I know that there is no way for me to ever repay her. I just pray that I can be half as incredible to my kids if they ever need me the way I need her right now. She has sacrificed so much to be here and she needs to get back to her life, but I will be so sad to see her go. Thankfully I am healed from my c-section and feeling great physically, so she got me through that part. I just hope somehow we figure out how to do this on our own. I have really depended on her the last two weeks so it will be an adjustment. Thank you so much to my Mommybelle!

Thursday, August 11, 2011

When a boy meets his Sister

I have been waiting for this moment for 23 days. Travis FINALLY got to meet his baby sissy! It was absolutely precious. He is certainly in love with this little girl. He was completely amazed at her and was so gentle, touching her hands and legs, talking to her, and even singing to her. It was the most precious moment ever and I will never ever forget it! He is going to be such a wonderful big brother. I will let the pictures do the talking!

Blue is really not your color sweetie.

Ava is giving me high blood pressure. If she has a good day, it is usually always followed by a bad night, or vice versa. Just when we think she is going to start behaving, she proves us wrong. It is emotionally exhausting to watch her go up and down so much. Last night was a bad night for Ava. She had many episodes where she would stop breathing, drop her oxygen saturations and her heartrate and even had to be bagged twice to get her back where she needed to be. I am really ready for her to just be more stable and simply learning to eat and grow.

The good news is that the preliminary results came back from the bone scan showing no signs of infection in the bones. This is really great news because it means she won't have to spend 6 weeks on antibiotics. The antibiotics are the only reason she still needs an IV so we are really hoping that she can be done with them VERY soon. Poor Ava is covered in bruises from head to toe (literally) from being stuck so many times. It is heartbreaking. I guess I have just been having a little pitty part for Ava and I lately because I just HATE that she is going through this.

I was able to do skin to skin care with her twice yesterday which was great. I love being able to bond with her and feel close to her. Hopefully as she becomes more stable, we will be able to do a lot more of that.

Tuesday, August 9, 2011

Bone Scan

Sorry for the lapse in blogging. I tried twice yesterday to post and both times my post got eaten! Frustrating. I only have so much time (while I pump) so I had to give up.

Ava is doing well overall. Still very up and down with her breathing. Sometimes she likes to breathe and other times she thinks it is overrated. I will be a very happy Mama when she stops that monkey business. It can be very scary. She is up to 23ml/3hrs of breastmilk fortified to 24 calories and is doing great with that, but unfortunately not really gaining weight. It takes a lot of calories to breathe (I know you are all jealous and wish you could lose weight just by breathing, but we need Miss Ava to GAIN!).

The infectious disease doctor that is looking over Ava does want her to have a bone scan so she is doing that today. She went down early this afternoon to have the dye injected and they shoud be doing the actual scan any time now. If she does in fact have an infection in her bones, she will need to be on antibiotics for 6 weeks. Obviously we are hoping and praying that this is not the case, but it's better to know and be able to treat the problem.

Over the last few days Ava has become SO much more alert as you can see in the pictures. She still does not have full control over her eyes so she does some funny things with them sometimes but she is opening her eyes so much bigger these days and really looking around. The doctor wrote orders for us to start non-nutritive sucking with Ava which means that I will pump until I am empty and then we will put her to breast so she can become familiar with the smells and practice sucking without being drowned by my milk, haha. I am really looking forward to this. She will be 30 weeks on Friday and depending on how stable she is she will start actually eating by mouth at 32 weeks, so we are just getting her ready for that. My milk supply is out of control. I pump 72-80 oz every 24 hours, so I am so thankful that I now have a deep freezer that was so generously donated to me!

Sunday, August 7, 2011

Ava Smiles

Ava has been doing pretty well. She is very up and down at times but seems to be holding her own. The best news of the day is that her blood cultures have been coming back negative finally. It took quite some time. Hopefully this means that her infection is under control. The infectious disease doctor would like for her to have a bone scan because the particular bug that she has been growing has a tendency to go to the bones. Her neonatologist is hesitant about this because it would be very stressful on Ava and she feels as though her labwork is indicating that the infection is under control. So they will put their heads together and try to make a decision about that.

For some reason, Ava has lost a lot of weight. She was up to 2lbs 12oz a few days ago and has dropped to 2lbs 9oz. We are not really sure why this is happening since she is now on full feeds of breastmilk and tolerating them very well. The most important thing for preemies is to GROW, so this is a little discouraging and frustrating. Her doctor also mentioned that she looks a little bit modeled. This basically means her skin looks sorta "marbly" if that makes sense. Her blood count is good and all her vitals are stable, so this is sorta a mystery as well.

She is still on the high flow nasal cannula but yesterday they bumped her up from 3 liters to 4 liters because she was having so many apenic episodes. She is still having them so they are considering giving her another med to help her remember to breathe, but apparently this medicine can cause problems with the tummy and she is doing so well with her feeds we really don't want to go backwards there. This is the NICU dance. She needs this, but it causes this, so is it worth it? That is the question we ask all day, every day. It is a difficult balance.

Last night we got to really enjoy Ava. She was WIDE awake and looking all around. I have never seen her eyes so big! We got to give her a bath pretty much by ourselves and it was so awesome! We love the nurse that she has. Yesterday afternoon I also got to kangaroo her. She did not tolerate it quite as well as I was hoping although she did seem very relaxed and it felt so great to have her against my skin. I really wish she was still in my belly :(.

I know I should never wish any of my life away, but it's hard not to want to fast forward through all of this to the day we bring our baby home. I know first hand that the preemie journey does not end there but I so badly want my family together under one roof, where I can REALLY be her mommy. Every day there is something new or different to worry about and I can't be there 12 hours a day like I was with Travis. I am completely exhausted at all hours of the day. Dragging myself up in the middle of the night to pump seems to just be getting harder and harder each night. But I know we will get through this because we got through it before. And someday, when Ava is three years old and dancing all over the house with her brother, it will be hard to believe any of this even happened.

Saturday, August 6, 2011

Holding Ava

Last night I finally got to hold Ava again. We didn't end up doing Kangaroo Care like I had hoped but maybe today. Still, it was wonderful to actually be able to hold my daughter. I held her the day she was born and the following day but have not gotten to really hold her since, minus when they were changing her bedding. She handled it pretty well, with a few desats and bradys here and there but overall she did well. It will be nice when she doesn't have all the IV's and so much extra stuff so that I can just reach in there and pick her up. There is not much new to report. Ava is doing well on the high flow and seems to be doing fine with her feedings. They are still trying to figure out her infection and get her on the right antibiotics, but she seems to be feeling much better in general.

Friday, August 5, 2011

Pretty in Pink (and zebra)

Oh my goodness. My entire life I have wanted a pretty little girl that I could dress up. Then I got the pretty little girl, but clothes are still way too big on her. So today, Ava got to wear her first accessory, a BOW. A friend of mine made Ava many teeny little bows that are just her size! As you can also see, Ava is no longer on that bulky bubble CPAP. Her doctor said it was bugging her more than it was helping her, so she decided to try her on high flow and she has been doing great! I am hoping to be able to do kangaroo care with her tonight, which is skin to skin holding.

Thursday, August 4, 2011


Ava was extubated today around 1pm! Such an exciting moment for Mama! She is now on the bubble CPAP which is the type of support she was on when she was first born. It basically gives her pressure to keep her lungs open while allowing her to do all the breathing on her own. She has been doing very well on that and we hope and pray that she continues to do well and can hopefully get back onto a high flow cannula soon. The bubble CPAP covers so much of her face and it is really hard to keep in place, so it is kinda a pain, but still a million times better than a vent! I know it must feel so good to have that tube out of her throat. Her voice is very hoarse and I am sure her throat hurts, but soon she will be feeling much better!
When people ask how I am, they might as well just ask how Ava is. Because when she is having a good day, I am having a good day! And vice versa. So if Ava is good, you know that I am good too :). Although you can pretty much always assume that I am exhausted. Pumping every two to three hours during the day and every three hours at night wears on you hard and fast.

Extubation Day!

Finally! After 8 days on the ventilator (it feels much longer than that) Ava is being extubated today! Her doctor is going to do one more wean on her vent and then she is going to pull her tube this afternoon. I am SO excited. I could jump up and down with joy! The ventilator is one of those things in the preemie world that is a necessary evil. Obviously it keeps babies alive, and if it weren't for the ventilator, neither of my babies would be here today, but on the flip side, every day spent on a breathing machine causes damage to the lungs. What a catch 22, eh? Yesterday they weaned her way down and so her doctor said "it's time!". She does still have a lot of secretions coming from her lungs so we have to hope and pray that clears up soon. Her blood culture from yesterday morning came back negative but the one from the day before was positive. Hopefully the most recent one will STAY negative. They have to get two days in a row of negative to know the infection is gone.

In other news, Ava is sometimes tolerating her feeds and sometimes not. She has had more trouble since they started fortifying the breastmilk to make it 24cal/oz. They are backing down to 22cal/oz and if that doesn't help they will just give her straight breastmilk. Her belly looks fine so it's just a matter of finding out what works for her. I didn't ask for her weight this morning because I was so excited about the extubation news. Last night she was still 2lbs 12oz. Her doctor says she looks amazing. That is always a great thing to hear. I am so proud of my baby girl, she has already had a tough fight and she is barely two weeks old. I am hoping and praying that now she can just grow and eat and thrive. Keep those prayers coming!

Wednesday, August 3, 2011

It's all coming back to me...

I have been meaning to write this post for a while, but just have not gotten around to it. I will start off with a quick update on how Ava is doing. Last night when we were with her, she was doing great and resting peacefully. She was mostly breathing over the vent so I am REALLY hoping we can get her off soon. Her incision looks very bad and the surgeon is supposed to come and look at it this morning. It's amazing how well she is doing considering all she has going on. She had a good night last night and is now up to 2lbs 12oz. She is gaining weight at a great rate. Her feeds have been backed down on since she was throwing up but she is now tolerating them well again at 12 ml/3hours.

Anyway, back to what this post is really about. Contrary to popular belief, doing this a SECOND time, does not make it easier. In fact, I feel as though it makes it twice as hard. All of the reasons that should make it easier double as reasons that make it harder. For example, I know what to expect. That's a plus, right? Well, not really. If I didn't know how much every day on a ventilator damages the lungs, maybe I wouldn't be as impatient to get her off. I also know how every day spent on a vent makes it harder to get off. There is a lot that I had "forgotten" about when Travis was in the NICU. More than likely I had just erased it from my memory, but as time goes on and Ava faces challenge after challenge, it is all coming back to me. Feeding issues, tummy issues, infections, surgery, respiratory challenges, brain scans, IV's, PIC lines.

It is usually when I am staring at her monitors, watching numbers fall, feeling sick to my stomach, that it really hits me. I can't believe I am doing this again. I can't believe I am watching these numbers, seeing my baby turn colors that no baby should ever turn. Watching nurses and RT's try to get her back where she needs to be. It is like de ja vu of the most horrific kind. The guilt I feel for putting Ava through this is something I cannot explain in words. Logically I know that I tried to fix the problem to prevent this from happening again. I was recieving the prenatal care that I needed and I did everything I could during my pregnancy to take it easy and be as healthy as I could. Emotionally the blame is 100% on me. I knew there was a risk, and I did it anyway. I would never trade my sweet Ava for anything, and of course I am so thankful to have her, but I think it will take time for me to forgive myself for putting her through all of this.

I feel like this post was very choppy and maybe did not make as much sense as I was hoping, but that's kinda where I am at right now. It's as if I am here, but not. Just going through the motions. It's called survival mode and I know it well. Someday, I hope to be snuggling in bed with Ava like I was with Travis this morning, the NICU a distant memory, thanking God for both of my sweet, healthy babies!

Tuesday, August 2, 2011

2 Weeks Old

Ava is two weeks old today. It's hard to believe, not because it has gone by fast, but because it feels like this journey has already been much longer than that. It is amazing how drastically life changes when your baby is born so prematurely. I don't think there is a single element of my life that is the same anymore. A typical day for me consists of pumping every 2-3 hours, visiting Ava around noon when the NICU opens, trying to find a car to buy, squeezing in errands and going back to visit at 7:30. Trying to work around pumping and a three year old has proven to be quite the challenge, but right now I have my mom here to help and she has pretty much taken over Travis care, along with making sure I have food in my belly and a clean house. She is amazing and I can't even THINK about how I am going to survive when she has to go home.

As far as an Ava update goes, she is still fighting an infection. It is now in her lungs, PICC line, blood and her incision. The particular bacteria that she has tends to take 2-3 weeks to clear up so this is frustrating and upsetting. The good news is that she still has not acted sick. She is still on the ventilator but she is mostly breathing over it and she is not requiring any extra oxygen right now. The new doctor that is on agrees with me that she is going to need to be pushed more to get off and she is hoping to extubate her in the next day or two. I really hope to see that happen. Yesterday she was on full feeds but she started throwing up, probably just from not feeling great from the infection, so they backed down a little bit on her feeds but she is still close to full feeds. She now weighs 2lbs 11oz. Overall she looks great. She really loves to lay on her belly so they have been mostly keeping her that way. I don't think there is much else to report about her. It's just a day at a time and our main goals right now are to kick the infection and to get rid of the vent. I think once those two things are solved, she will be able to move forward much more quickly.

Monday, August 1, 2011

Even Ava Prays

Ava's lumbar punctur went perfectly yesterday. The initial results that came back look perfectly nomral, which indicates that the infection that she has is only in her blood and is not meningitis. Thank God! They will continue to watch the cultures but since they started her on antibiotics so early, it seems we are ahead of the game. Ava's actual behavior has really been unchanged. This is HUGE. When Travis was septic, he was already SO sick before they figured out what was going on, so being head of the infection has already made all the difference in the world. Unfortunately Ava is still on the ventilator. This is obviously one of our biggest goals at the moment but it is all up to her. I am trying my best not to focus on it and just trust that she will come off soon. Sometimes it is so much harder when you know too much. If I wasn't so well aware of the damage a ventilator does to the lungs, I may be a little less concerned with getting her off ASAP. But there is nothing I can do to make that happen any sooner.

Feedings are going fairly well and I am thankful because I am producing mass amounts of milk for Ava and she needs to start making room in my freezer, haha! She started on 2ml's every 3 hours and she is up to 12ml every three hours. Full feeds for a girl her size is 15ml every three hours. She is almost there and is being weaned off of her IV nutrition. Since pumping is really the only thing I can do for Ava right now, it makes me very happy to have her eating. Obviously at this point, she is just getting the milk through a tube, but however we can get it to her belly is great! The other awesome news about this is that she is pooping on her own! It may seem trivial but this is an incredible sign that her digestive tract is working well!

Last night was "bath night" and it was Ava's FIRST bath. It was really just a sponge bath but we got to help out, and boy did she need it. She was NOT happy about the whole ordeal but overall she did well. This girl has definitely got an attitude. Unfortunately, our camera has decided it was a great time to stop working. Pretty frustrating but we will be getting a cheap point and shoot for now. So all I have are cell phone pictures.

Saying her Prayers