7 Months Old!

I know, I am the world's worst blogger ever!! I was having some technical problems a few months and it just threw me off. I hardly had time for blogging, let alone dealing with those issues so I just kinda stopped! I apologize for that because I saw some comments asking if I was coming back! You all have probably stopped checking by now, but hopefully I can get back into the swing of things. Ava keeps me pretty busy these days, but I will do my best!

Ava is 7 months old today! Can you believe it?! I know that I can't. Time is really flying and she is just getting bigger and bigger every day! She has been home from the NICU for over 4 months now. The first two weeks she was home was pure bliss. She was so easy and happy. She was still on her NICU schedule and would sleep for 4 hours, wake up to eat a bottle, nurse a little bit, then go back to sleep for 4 hours. I couldn't believe a baby could be THIS easy. Well, it didn't last long! Suddenly things changed and she became extremely fussy, screaming all day, up most of the night. It was horrendous. We got her on reflux meds and they seemed to help a little bit but she was still absolutely miserable. After much denial, I eliminated dairy from my diet. That worked wonders...for a while. Currently she is extremely fussy again but I think it may be in part to teething.

Aside from the fussiness, she is AMAZING! It took TONS of work, lots of tears and frustration, but I am proud to say that Ava is exclusively breastfed now! It is a huge accomplishment for both of us considering her tough start and need for bottles for the first part of her life. She is currently weighing about 14.5lbs and is such a chunky little thing! It's awesome to know that is all because of me. She has been rolling over for a few months now and she loves to sit up although she still needs support for that. Developmentally she is right on target. She loves playing with her toys and hanging out in her exersaucer. When she is not fussing, she gives us the biggest smiles, it is really awesome!

Travis is completely smitten with Ava and has to have his morning snuggles with her every morning. They are so sweet together and it is truly such a blessing to watch them interact and love on each other. I can't wait to see their bond grow as they get older.

Right now we are still very much in isolation mode. It seems to be a late RSV season here so we are keeping the kids in their little safe zone (home) as much as possible. We try to get out every weekend (providing the weather is nice) and do something fun with Travis. We are limited to outdoor activities. We have gone on a little train ride, took him for a pony, ride, and visited a farm. Today I think I will take the kids out to the Farmer's Market and pick up some fresh produce! That's all for now!

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!

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!

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.

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!

"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!

Who is that baby!?