Sunday, October 16, 2011

Technical Difficulties

This is more of a test to see if I am now able to publish posts. I was having some issues before and hope to have the blog back up and running now!

Thursday, October 6, 2011

Welcome Home Ava!

Surprise!!! Ava is HOME!! I am sorry for keeping everyone in the dark, but eventually the constant let down got the best of me and I decided this time that I was not going to tell anyone she was coming home until she was ACTUALLY coming home. As in, in the car, on the way! Believe it or not, we almost did not come home today. I literally had her dressed in her pretty dress and ready to go when the doctor walked in with a regretful look on his face. He told me that he was SO sorry but that he had forgotten to have an MRI done on Ava's brain and we needed to do that before she could leave. I was CRUSHED, to put it lightly. I asked if there was any way we could do it at a later time. He left the room to think it over and talk with a couple other docs and came back and told us we could leave! Hallelujah praise the Lord!!
It all started yesterday when she got to re-take her carseat test. My anxiety was in full drive and I was waiting on pins and needles to find out if she passed. It was incredible news to hear that she had done it! The next step was to room in. We got to the hospital at about 5pm last night and got a room. The idea behind rooming in is so that the parent(s) can see what it will take to care for their baby on their own with the nurses standing by. Everything went great. Ava ate all night long it felt like! She is such a little piggie!
At about 11:30, we finally got to leave the hospital with our baby girl for the first time after 79 very long, grueling days in the NICU. Ava will be 38 gestational weeks tomorrow, and she weighs 5lbs 4oz! Exactly 2lbs smaller than Travis was when he left the NICU. We brought her home on an apnea/brady monitor and caffeine, and...thats IT. She is so much more like a typical newborn than Travis was. Eating on demand, as much as she wants! She breastfeeds and bottle feeds. She poops, she pees, she sleeps, she grunts, she squeaks, but she rarely cries. She is such a sweet girl and we are all SO excited to have her here. Travis is absolutely in LOVE wit his sissy as you can see in the pictures.
Thank you to everyone for following this journey. It's definitely not over. As I have learned with Travis, the preemie journey does not end after the NICU. In fact, I am not sure WHEN or if it ends at all. These babies are so very special and I truly hope that they can appreciate what they have been through later in life. So now the plan is to enjoy our new baby, keep our family healthy and love life!



Saturday, October 1, 2011

Apologies

I apologize for the lack of posting lately. The last several days have been such an emotional roller coaster that I have not had the energy to update. Things always change so quickly in the NICU. This will be a short update but I just wanted to let those of you following Ava's journey to know where we are at right now.

We have *almost* brought Ava home 3 times now. Each time, something has happened to delay that and each time I have been completely crushed and heartbroken. The cumulation of all of that heartbreak has put me in a pretty dark place. I am struggling to cope with the let down of not having my baby home. The reality is that she has not been in the NICU that long. That is, if you compare her to her brother. But the other reality is that between the two of them, I have spent 216 days in the NICU. That is approximately 60% of one year. As you can probably imagine, I am pretty over this by now. I am over calling the NICU several times a day to ask someone ELSE how my baby is doing. Over driving 25 minutes one way and paying for parking just to see my own daugther. Over getting my hopes up just to be let down. Over the constant anxiety and fear of something going wrong that will delay her even more. Over staring at monitors with numbers telling me if my baby is breathing well enough. Over being away from Travis at bedtime and feeling torn between him and Ava. Over never seeing my husband or having ANY time with him at all because as soon as he gets home I leave for the hospital. I am just over it all. I am tired and worn down, and not in the physical sense of the words. I am emotionally exhausted.

I may never understand why having children is so easy for some people and for others, it is such a challenge. For some, not even possible. I feel blessed that I DO have my babies. But a little bit frustrated with God right now for putting them and me through this journey. As much as I want to give up sometimes, especially right now, I know that I can't. And maybe thats part of the problem. Everyone says how strong I am, but really, what other choice do I have? Is crying all day for days on end really strong? This IS my life. This is the hand I was dealt. Right now, I am not strong, and I am ok with that. I am fervently praying to God that He can renew my strength and help me get through these days that follow, how ever many there will be.

Enough about me. I know this blog is about Ava and I am sorry for getting a little off track. In general, she is doing well. She is growing and eating and being a big girl. One of the reasons she did not come home was because she failed her carseat test. The carseat test entails sitting in the carseat for an hour with no issues. With only 10 minutes remaining on the test, she became apenic and dropped her heartrate and oxygen saturations. She was supposed to re-do the test yesterday but she ended up having two apenic episodes that were unrelated to feeding so the doctor has decided that she needs a few more days. She has to go 5 days free of any episodes before she can come home. So the soonest we are looking at now is Wednesday, granted she has no more episodes and passes her carseat test between now and then. She weighs 4lbs 13oz and is eating like a champ! When she does come home she will be on an apnea/brady monitor since she has a tendency to drop her heartrate during feeds.








Saturday, September 24, 2011

Not as soon as we thought.

I want to start this off by assuring everyone that Ava is still doing very well. Nothing has changed with her. However, yesterday was a very difficult day for me. I was finally able to speak with the doctor for more than a few seconds (over the phone albeit). I was shocked when he informed me that Ava will not be going home for at LEASt another two weeks. The nurses have been making it seem like it would be very very soon, as in next week. I was asked to bring in her carseat and everyone has been talking about how soon she is going home. So to hear that was like a punch in the gut.

His reasoning is that he wants to get her off the caffeine and he does not feel that she is "reliable". She still desats and bradys with feeds and the doctor feels as if this is just a matter of being uncoordinted and that with time and patience she will get the hang of it just fine. The problem is not that she doesn't want to eat but rather that she tries to inhale her milk without breathing. If you haven't noticed, breathing is kinda low on Ava's priority list and has been for the last two months. That needs to change. When she is not eating, she has been breathing GREAT without the cannula, so that is not the issue at this point. But if you have ever tried to suck on a bottle you would actually realize that suck/swallow/breathe is a little more complicated than it seems. Especially when you are just a little nugget like Ava. She hasn't been doing this her whole life like most 2 month olds. So, while we ARE certainly getting closer, we are not getting closer as fast as everyone has been letting on.

I want to clarify that I do not want to rush Ava out of the NICU. Yes, I want her to be home, but moreso, I want her to be ready. The hardest part about hearing that news yesterday was that I was led to believe that she was going home in a few days, I was in a completely different mindset. I was preparing at home and getting ready for her. I was feeling like my trips to the hospital were soon to be over. Being that I have been through this before, I should have known better. I shouldn't have gotten my hopes up until I was literally IN the car with my baby, driving home. But it's a tough thing to do...not get your hopes up. I respect the doctor's opinion, and to be honest, I agree with it as well. I don't trust Ava at this point and even though I feel confident that she would be ok at home, it would be scary. So, we just have to be patient and give her the time she needs to be ready. And before we know it, all of this will be a distant memory. When Travis was in the NICU, things were much more intense and he was there twice as long as Ava has been there already. And even THAT is a blurry fog to me. So I know that we will get through it, move past it and one day or life will be just as normal as any other family of four. I am seriously longing for that day!

Friday, September 23, 2011

"Getting Closer..."

Ava is certainly getting very close to coming home. She has been off the cannula for a few days now and has been doing well. She also has been doing great with her feedings for the most part. Her biggest issue with feeds is not that she does not want to take them but rather that she is SO eager to take them that she sometimes has a hard time pacing herself and remembering that she can't just eat, she has to breathe as well. She is getting it though and with time she will become more and more coordinated. She is only 36 weeks today so it's understandable that she doesn't have it perfect yet. She weighed in at 4lbs 9oz. Her gain has been slow since she started taking all her feeds by mouth because she burns so many calories eating. They allow her to create her own feeding scheudle and she has pretty much stayed on an every 4-hour schedule which I think will be great when she comes home.

I have a few questions for the doctor that I have not gotten the chance to ask yet but hopefully will soon. One of my biggest questions is if they will send her home on a monitor. I have heard that they only do if the baby is on oxygen, but with her history, it would make me feel a lot more comfortable. I am also wondering if we will be required to "room in" with her. This is standard for all parents to room in with the baby for one night at the hospital before they go home, but I am hoping that since this is not our first rodeo that we don't have to.

Last night Joe brought Travie up for a quick visit with Ava and he got to hold his baby sissy for the first time! He absolutely loved it! He was so doting and sweet with her. Touching her head and singing to her. It was precious and now I am even MORE anxious to get her home where her and Travie can really begin to bond. It's so amazing to me to see my two miracle babies together, and I can't wait until that is an everyday occurance! Hurry home Ava!













Wednesday, September 21, 2011

Monday, September 19, 2011

It won't be long...

I have been hearing a lot of that lately. Nurses come by to ask how Ava is doing and everyone's response is the same, "she is going to be home SOON!" I have had RT's and nurses asking me left and right if they have given me a time frame or a date yet for her to go home! What an exciting thing to be asked. So far, the doctor has not talked to be about when Ava will be going home, but we do know that it will be soon. Starting today she is being allowed to take all of her feedings by mouth, either by breast or bottle or both. Let me tell ya, feeding is NOT a problem for this girl! She looooves to eat! And that makes me a very happy mama! Feeding is still a huge issue with Travis so this is such a blessing.

From the sounds of it, once Ava masters her feeds, they will send her home, even if she is still needing oxygen. I have a feeling she won't need oxygen as they have dereased her to one liter and ever since that change she has only been on 21%. I hope she can come home completely tube free but obviously if it means she comes home sooner I would be more than willing to bring her home with oxygen. I know she would only need it for a short period of time if anything. One way or another, we are nearing the end of our NICU stay. I could not be happier about this. Ava will be 9 weeks old tomorrow. It has been a long nine weeks although it is NOTHING compared to how long we spend in the NICU with Travis. I pray that she just continues to eat like a little piggie and can get off the cannula and be home with us very very soon. I will keep you all posted!

I took this picture as I left for the NICU last night. The sky was SO beautiful and shortly after I took this picture we had a huge thunderstorm. We need the rain so bad so it was very exciting!


















Sunday, September 18, 2011

Blog Makeover!

I just wanted to say a HUGE thank you to my friend Katie for giving my blog a makeover! I love it so much and hope you all enjoy the new look! Thank you Katie for spending the time to do that for me. I really appreciate it!

You can go visit Katie's blog over at http://yehfamilyhappenings.blogspot.com/

Friday, September 16, 2011

35 weeks

Ava is 35 gestational weeks today. I should be huge and waddling and uncomfortable right now,but instead I have spent the last 8.5 weeks getting to know my little girl on the outside, watching her struggle and fight, and overcome. During my pregnancy, I had many little goals set up. My first goal was to make it past the time my water broke with Travis (19w6d). Then it was to make it past 23w2d, when Travis was born. Then "viability", 24 weeks. I made it that far and was so relieved. My next goal was to make it to my third trimester. I never made it. But my ultimate goal was to make it to 35 weeks. I swore that if I made it that far I could totally and completely relax. Clearly, I missed that one by a long shot!




Things have been going rather smoothly in the NICU, which is what we love! Essentially Ava is just working on eating and figuring out her breathing so that she can come HOME. There have been lots of little comments made here and there by nurses and RT's working with Ava about how she is "gonna be outta there in no time!" It's still impossible to know exactly when that might be, but at least we are getting closer. Currently she is taking two feeds by mouth per shift (12 hour shifts). Once she has masted that for 24 hours she gets to move up to the next step. She ALWAYS does great for me. Usually she nurses for 15-20 mins and then takes about an ounce from the bottle. Her weight gain has been up and down since it takes so many calories just to eat, so she is about 4lbs 6oz right now. Her most recent eye exam showed Stage I ROP. It is really not a concern unless is progresses. I don't really have any expectations of that happening. Otherwise, there is not much else to report on Ava. She is just an eating, peeing, pooping, growing little baby. I do believe we have reached "feeder grower" status!



Monday, September 12, 2011

55 Days Old

Ava is 55 days old today! That is almost two months. Wow. My little girl is getting bigger and bigger each and every day. I am so proud of her progress. She struggled a little bit with all the changes that were made quite rapidly but she seems to be adjusting now. She passed her first "step" of oral feedings, which was taking one feed per shift for 48 hours. Now she is moving up to 2 feedings per shift, which is half of her feedings. I will be there for 3 of the feedings today which means she will breastfeed for 3 and take a bottle for one. She nurses GREAT! It makes me so happy since Travis never successfully nursed. I enjoy that bonding time that I never got with him. Even bottle feeding a baby can be bonding, but with Travis it was torture for both of us and that makes me really sad.

Ava weighed in at 4lbs 5oz last night. She has steadily been gaining about an ounce per day for the last few days! So we know she can eat, we know she can grow. Literally the only thing holding her back is her breathing. As soon as she masters that, she can come home!! I have NO idea how long it will take her. Could be a couple weeks, could be longer. We will just have to wait and see. Currently she is only on 2 liters and usually only needs minimal oxygen if any, so hopefully it won't be too long! We are SO ready for her at home!!



























Saturday, September 10, 2011

Ava EATS!!

Just a quick update this morning. I called to check on Ava this morning and recieved some of the best news ever! Before I get to that, she also weighed in at 4lbs 3oz! Ok, onto the great news. They lowered her flow to 2 liters. The most important part of that is that she is now allowed to eat by mouth! She has been doing non-nutritive suckling at the breast for a few weeks now, but today they offered her her first bottle. Generally it takes preemies a while to figure out how to eat. Suck, swallow, breathe is harder than it sounds. And in the case of Travis, he NEVER ate well, and still does not. He came home with a feeding tube and had it for almost a year. After we pulled the tube, eating was a HUGE challenge. We would both end up in tears and I would have to essentially force feed him. It was horrible and awful beyond what I can describe in words. I have begged and pleaded with God to let Ava eat. And guess what? SHE TOOK THE WHOLE BOTTLE!!!! I cried. This is amazing. Incredible. Wonderful. An answer to many prayers. Feeding is something that keeps babies in the NICU, and it looks like that may not be a problem for Ava. I realize that this is just the first bottle. But the fact that she took the FIRST bottle, no problem, well that is HUGE. I am so proud of my sweet baby girl!

A Brothers Love

I have to admit. I have always wanted two girls. Mostly because my sister, Jennifer and I had/have an extremely close relationship. I feel as if she is much more than a sister. She is my best friend. I have always wanted MY own kids to share that bond too, so the way I pictured my life in my head was with two little girls just a couple years apart. And then.....along came Travis :-). And of course, I would never ever trade him! Now we have Ava, and I am so excited to watch their relationship grow. I didn't have a brother growing up, so it is going to be really neat to see how they interact and what kind of relationship they will have. I imagine Travis will be quite protective of his baby sister. So far, he is in love. When I talk about Ava he begs to go see her, and when we are there, he talks to her, touches her ever so gently and, well...he just loves her. I love this picture because we have a picture that is almost identical of my sissy leaning in to kiss me after I was born. I was in the same type of plastic basinette. It was the first kiss of a lifetime of love and I pray that my children feel as blessed to have each other as I feel to have my sisters.








Friday, September 9, 2011

Good News, Bad News

That's kinda how it goes in the NICU. You can never JUST move forward. You have to move forwards and then backwards a little before you can keep moving forwards.

Yesterday Ava DID reach 4lbs! YAY! She also got moved to an open air crib! I have pictures of that but I left my camera in the NICU last night so those will have to wait. They stopped her Dopram completely, but last night she began having apenic episodes again, so they restarted it at 2mg. I am trying really hard not to let this discourage me, but I won't lie, it's pretty upsetting. Mostly because I thought she was really better and no longer needed drugs to help her remember to breathe. I was really hoping she had "outgrown" her episodes. It is also upsetting because the doctor wants to get her off the medicine before he decreases her flow on the high flow. In order for her to eat by mouth, her flow has to be decreased, so it is all a chain reaction and this ONE medicine is holding us back, which is quite frustrating.

I am hoping and praying that soon she can move forward the way she needs to. This is a long hard journey and I am ready to be done with this part of it.

Wednesday, September 7, 2011

Overdue Update!

I apologize for the lack of posting! Ava has been doing very well the last few days! Currently she is on 4 liters of high flow. The goal is to decrease her flow so that she can eat by mouth, but the conflicting matter is that she is also on a medicine called Dopram that helps her remember to breathe. The doctor wants to get her off that medicine before decreasing her flow as they are unsure of the long term side effects of Dopram. So for the last couple of days he has been weaning her dopram and depending on how her night went (I have not called yet) she will be off the Dopram today. As long as she does ok, they can start weaning her flow as well. She may not be technically allowed to eat yet but we are allowed to do non-nutritive suckling and she latches onto the breast extremely well and is very effective when she nurses. So I have high hopes that she will be a great eater!


Curently Ava is getting 36mls of breastmilk every three hours. To give you an idea of how much surplus I am making, I am able to pump about 240mls every 3 hours! She is doing well with her feeds and tolerating them fine. I am anxious to find out her weight from last night. She has been teetering right below 4lbs for a few days now so I am hoping that she hits that milestone today! She really is getting SO big! I love being able to hold her and snuggle her every time I go in. She is so much more alert these days and I am so in love!


A couple days ago, they tested her out to see if she could regulate her own temperature in an open air crib. Unfortunately she got a little bit on the cold side so she will stay in the isolette a little bit longer. My guess is that she will be in an open crib within a week. Once she hits that 4lb mark it becomes much easier to regulate her body temperature.


Natrually, I am getting pretty anxious and excited to bring her home. The bigger she gets, the more she feels like just a normal baby. In some ways it feels like it is just around the corner and in other ways, it feels so far away. The reality is that all she needs to do is eat, breathe, and grow. She is not requiring any oxygen so the cannula is there just to give her flow to help her remember to breathe, so hopefully she won't need it much longer. I really feel as though eating is not going to be a problem for her so once they allow her to start, that could happen pretty quickly. And she IS growing, so we have got that one down! It sounds so simple, but this process could take a while. If I had to guess, I would say she will be home in 3-6 weeks, but who knows! Only God!





Saturday, September 3, 2011

The Highs are SO High!

I think what contributes to the NICU being such a roller coaster is not just that the lows are so very low, but that the highs are so high. Each time Ava moves forward, I am not only completely overjoyed and excited, but I become equally nervous because every step forward has potential to become steps backwards. Obviously we want her to move forward, but sometimes it can be just as scary at times.

Last night with Ava was amazing. She had our favorite nurse taking care of her, so she was already off to a good start. It really makes all the difference in the world to have nurses that you love and that love your baby...but that is an entirely separate post that I will be writing soon! When babies are on Sipap or CPAP, the head gear used to hold it on can cause reddness and breakdown on their skin, so every 12 hours an RT comes and removes all of that head gear, massages her head and gives her a little break. That is usually when she gets weighed and bathed also. Well last night, after they took her off the Sipap, she did AMAZING. She was actually doing better than while she was on it. She was not receiving any blow by oxygen or anything and was keeping her sats WAY up. It was so awesome to see. Because of this, the nurse and RT asked the doc if we could try her again on the high flow. He agreed! Ava was on NOTHING for about 45 minutes and did amazing the whole time! It was so exciting, and felt amazing to hold my little baby without so much attached to her! We also weighed her and she weighed in at 3lbs 11oz! She is getting SO big! So as of last night at about 9:30, she has been on 4 liters of high flow. She had one minor episode this morning but has otherwise done well. I am so hopeful that this lasts because if she can get her breathing figured out, then we just have to figure out eating, which I think she will be great at. At the same time, I am nervous to get too excited so we will just have to wait and see and hope and pray that she can do it!

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

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!

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!