Sunday, October 16, 2011
Thursday, October 6, 2011
Saturday, October 1, 2011
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
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
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!
Monday, September 19, 2011
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
You can go visit Katie's blog over at http://yehfamilyhappenings.blogspot.com/
Friday, September 16, 2011
Monday, September 12, 2011
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
Friday, September 9, 2011
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
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
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
Monday, August 29, 2011
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
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
Tuesday, August 23, 2011
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
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!
Friday, August 19, 2011
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
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!