ALL SETTLED IN

Well, we have been home now for over a week and things get more routine every day. It was a rough first few days at home with Justin being sick and Ava and I at my parent's house. We were so grateful they let us crash there for a while but it was nice to be home and start our own routine here. She has been getting better about being awake during the day instead of at night which is definetely a plus! Justin is absolutely in love with his little sister. He wants to be everywhere the baby is. He talks about her eyes, nose, mouth, etc. and loves when she rides in the car next to him. It is so nice that he likes her, for now ;-) She is getting bigger every day and is finally starting to fill out newborn jammies. They are certainly still too big but at least you can tell there is someone in there! I thought I would try a new bottle with her after she had been home for a while. I switched her to Avent which is what we used with Justin. It is a nicer bottle that controls the flow a little better than the cheap throw-away hospital bottles. She does SO well with them and we can now just feed her like a "normal" newborn. Jason has started feeding her as well. He was a little apprehensive after watching me feed her the night she was choking so bad and I don't blame him!

Today marks one week away from my due date and we already have a two month old. It is so weird to think that I should still be pregnant right now. We feel so lucky to have two perfectly healthy babies as there are so many unfortunate outcomes when you start off in the NICU. Thank you everyone for keeping track of Ava's progress since day one! It means a lot to us to have such great friends and family! This will be my last Lil Miss Ava blog post. Everything is great with her and she is growing like a weed. Please feel free to email me for updates. Love to you all!

MEG

WE'RE HOME (TAKE 2)

We are finally all home, again! I didn't blog yesterday because it was such a busy day, then I fell asleep! Ava had some pictures taken yesterday morning and then her doctors appt. in the afternoon. It was basically just for a quick weight check and to take a look at her. She weighs 5 lbs 14 ounces! Up four ounces since we left the hospital! That is great news. Preemies always tend to lose a little when they go home but she is doing great. I remember when Justin went home (he was a horrible eater-but not choky) I thought he was never going to gain weight! It would take him over an hour to eat one ounce, then he would fall asleep. She is a little easier in that respect! So, things are good here! Not much to report. Justin is finally feeling better and Jason is so happy to have his baby home. It will be nice for the next couple weeks because Jason has some time off. We can trade off on toddler/infant duties. It will certainly be interesting with two when he goes back to work though! Yikes!

QUIET DAY

Today was just a hang out day at home. Ava is doing great and eating like she is supposed to. She had her first bath since she left the hospital and loved that. Also, hopefully good news...she was awake most of the afternoon. It would be SO nice if she slept the night away! Tomorrow we have a big day. She is having some photos taken in the morning and she has her first doctors appointment in the afternoon. It is just a newborn check so I am sure they will just get a baseline weight and learn about her first few weeks in the hospital. She is also eligible to get synagis shots that we will need to get from her clinic. I don't think she will get one tomorrow because it needs to be special ordered but hopefully soon. The shots are to protect her from RSV and she will get one per month until April. Justin got them his first year of life as well. The shots are around $3k a piece so only babies born before 32 weeks are eligible. I will be excited to weigh Ava at her appointment tomorrow! She seems so big!

I'M TIRED

That's all...

WILD CHILD

Good news! It is 8:30pm as I write, and Ava is already wide awake (has been since 8)! I am hoping that means she will go to bed before 1am!! Last night, I went to bed early because I was exhausted. She was sound asleep at 8pm so I thought I would go to bed then and hoped she would sleep until 10:30 (her next feeding time). Wrong! It was like a light switch went on at 9pm and she was ready to go!! She is like a ravenous beast at night wanting to eat the whole time she is awake! She stayed awake until 1am and then finally fell asleep. Maybe tonight since she is awake earlier, she will go to bed by midnight. One can only hope! She is eating really well and I am sure gaining weight! She seems bigger to me. Justin still has a cold. You know how it is with kids and colds. It's like a big snot-fest. So, we will continue to stay at my parent's house until that is under control. We were thinking tomorrow but it might be Sunday before we head home. The last thing we need is for Ava to get a cold! She would certainly end up back in the hospital and I am not returning her, again!

UP ALL NIGHT

Have you heard of the new show out called "Up All Night"? I have never actually seen it but I think it was made about us. Boy do we ever have a night owl on our hands! The good news is, I didn't have to return her this morning ;-) She was a good eater all day and all night yesterday. No chokes at all. She was literally up ALL night though. I went to bed early (around 9:30) because Ava was sound asleep so I thought maybe I could get a couple hours in before she woke up. Not a chance. She was up by 10pm, and still at 11pm, still at midnight (see picture) and still at 1am. Then, after she finally seemed a little tired, we went to sleep, for about an hour. She just wants to be awake and eating! Then of course this morning and still right now, she is as quiet as ever and sleeping. Boy this will be a fun one to turn around. Although it was a long night, I am so glad she is home and it was so nice to just get to hang out with her. I just hope before Jason goes back to work that we will be hanging out more in the day and not so much at night!

WE'RE HOME-SORT OF!

Yay! We finally made it out of the hospital again. Justin came down with a cold yesterday (first one since last Christmas-of course) so Ava and I have moved in to my parent's house for a couple days. Jason is at home with Justin and I am with Ava. We certainly can't afford to bring her home to a germ-infested two year old who just discovered his nostrils a few weeks ago! Last night I spent some time down at the hospital and also this morning. I wanted to make sure I was 100% comfortable with her bottling because I am NOT bringing her back again. She hasn't had any choking in a few days and has done great so far! Let's hope tonight goes well! I did learn a few days ago that Ava is quite the night owl though. We could be in for a world of hurt with a girl up all night and wild two year old during the day! She usually wakes up around 9 or 10pm for a feeding and stays awake for a couple hours. YIKES! Last night I left the hospital at almost 10pm and when I called the night nurse before I went to bed (at midnight) she was still awake! We'll have to get her turned around somehow, eventually. Upon discharge Ava weighed 5 lbs 10 ounces. She is getting to be a big big girl!!!

LET'S TRY THIS AGAIN

Well, we gave the little pipsqueak one extra week to get her choking out of the way! She is making good progress and is ready to come home. She still certainly needs to be paced and does not eat like a "normal" newborn yet but we are in better shape than last week. She'll get there. Ava had her eye exam today and her eyes are fully mature. That is great news! No more follow-up exams. We are on our way home again tomorrow. Wahoo!!! This time, I am not taking her back!!!

2 MORE DAYS

Ava weighs 5 lbs 8 ounces today! She is getting to be such a big girl. Had a nice big weight gain since yesterday which means she is doing really well with her bottling! My wish came true, she didn't have any choking spells last night! So, we have gone more than 24 hours with nothing. Tomorrow morning is her eye exam so we are going to get that taken care of in the hospital. Hopefully her eyes are mature by tomorrow so we don't need a follow-up after we leave. All she has to do from now until Wednesday is prove she is a big girl with her eating and we are home free, again! This time, she better behave ;-)

MORE OF THE SAME

We can't seem to get over the hump of one choke per 24 hours. She does well all day and most of the night! She had one very minor choke last night and that was it. I am really hoping sometime in the next day or two we can go a whole 24 hours without anything!!! When I am up in the middle of the night pumping, I always call to see how the night is going. I just hope to call tonight with a good report. She is 5 lbs 6 ounces today. I know that is SO tiny for most, but she looks so big and healthy to me! FAT cheeks and all! I guess it is all relative. We originally had an outpatient eye exam scheduled for Tuesday but we have changed that to inpatient while she is there. There is no reason to discharge her on Tuesday (we already decided she isn't leaving tomorrow) and then go get an exam. So, instead, they will do it at the hospital and hopefully discharge us on Tuesday (after the exam) or Wednesday. That is the goal, but again, she is the boss!

GETTING THERE

Just a quick update today. We don't do much at the hospital other than work on bottling. They don't have Ava hooked up to many monitors (they still keep her heart rate monitor on because I think they have to) but nothing other than that. She did have one choke last night at one of her feedings and I think it is because they had her on a three hour schedule and she wasn't awake enough to eat. They have changed her ad-lib schedule to whenever she shows cues with a max of four hours. She seems to do best with that. I bottled her at 2pm this afternoon and it was the best she has EVER done! She is starting to do the "normal" suck-swallow-breathe thing which is so nice to see. She doesn't do it the whole time, sometimes she just takes a break and breathes for a bit, but she'll get the hang of it soon! I would guess another day or two. The doctor told me today that we would make a decision together about her discharge date. We want her to ready but also for me to be comfortable. As long as she isn't choking a lot, I can handle the rest :-)

MORE TIME

Today was a good day. Phew! We met with the Occupational Therapist this morning at Ava's 10am feeding to see if she actually had a pathological eating issue or if she was just immature. Her mouth was examined and then we fed her a bottle. Another bottling system was introduced and she hated it. So, we stuck to the one she has been using. The frustrating part about the ones we are using (and I am pretty sure this is the case with any brand) is that some of them can be defective. So, some might flow faster or slower than others. It would be really nice for them to be consistent, but oh well. So, the consensus was, Ava just needs more time. She did really well over night with one very very minor choke. I fed her this afternoon and she had no problems at all. Our goal is to get her through the night with no issues. We are just going to play it by ear as to when she can come home. I am guessing it won't be too long. When normal full-term babies eat, they do suck-swallow-breathe, and repeat. Ava, at this point, does suck-suck-suck, breathe, breathe, breathe. In the next three weeks, she will eventually get to the point where she is doing it the "correct" way, it is just a matter of getting to that point. It will be quite the marathon for us, but again, we have done this before. We will eventually look back and think this was no big deal. But, as you live it, it is quite stressful. A good family friend always says, "this is temporary", and he is right!

EXPECT THE UNEXPECTED

I have learned over the years with my two preemies, that you should always expect the unexpected. Nothing, and I mean NOTHING, is easy. They don't do things as normal full-term infants do, even when they hit full-term status (which is this Saturday-37weeks). We got Ava home yesterday at around noon. We were SO excited to finally have our whole family home! Upon Ava's discharge, we talked about all the things we needed to know before going home. How to change her, how to put her to sleep, how to bottle her, etc. It had been brought to my attention that in the last couple days, she has had little chokes during her feedings. Not every time, and never when I fed her. The nurses just mention it if it happens. I don't think the severity had ever been brought to the doctors attention, and certainly not mine! By the time we were ready to go home, I was confident that I could take care of these little chokes because Justin was a terrible eater when he got home. He would just keep drinking and forget to ever breathe. I was assuming (because it was never mentioned) that Ava was doing something similar because the nurses didn't ever make it sound like anything more than that. Anyway, after we got home, things were going well. I fed her at 2pm and 6pm with no trouble at all. Then, at her 10pm feeding, she choked....really bad. There is nothing like having a 5 pound baby in your hands that is blue and limp (don't worry, she is fine). I got her back to pink again and she ate the rest of her bottle. This is very very common with preemies. They just don't have the coordination down very well and can choke easily. I figured she would be fine going forward but really hoped that was the only time I ever had to deal with that. It is horrible and stressful! Then, at her 2am feeding, she choked. At her 6am feeding, she choked. I was using all of the bottles, nipples, positions, everything from the hospital. I tried everything throughout the night and she just couldn't get organized enough to eat without choking. She was always awake and alert and ready to eat, just couldn't do it. I am not really an anxious person and am usually not quick to call for help but I knew we couldn't continue doing this. I wasn't going to risk her life just to keep trying. So, I called the only number I knew by heart...Special Care. I talked to the charge nurse to see if she had any recommendations for me to try. She had me talk to Ava's primary overnight nurse so we could chat about different ideas. At that point, we thought maybe it was just too soon for Ava to have gone home. I just don't have the equipment at home in case she chokes really badly nor should we have to be worrying about that at home. Ava's NP had just come in and she recommended we bring her back in. She wanted to do some labs to make sure it wasn't any other issue and also give her more time to get organized with her feedings. She clearly went home a little too early. Bummer! So, we will give her a few more days and see how she does. I remember with Justin, one day it just clicked for him and he never had trouble after that again. I also talked to the doctor and she mentioned possibly having an occupational therapist come look at Ava's bottling techniques. In Special Care (and the NICU) they only have two different types of bottling systems, Gerber and Nuk. The occupational therapist will help decide what the best bottling system is for her (they have a lot more options) and offer some other suggestions based on what they see. I am thinking it is truly just an immaturity thing, but if they can help, I'm all for it.

It has been a really hard 24 hours and it is tough to stay positive through all of this. But, I know she is in the very best place she can be and they have all the right tools in case she needs more intervention. This whole thing kind of took the wind right out of my sails but I know that as soon as she gets better at eating, we will be on our way home again. This time for good!!!

WE'RE ALL HOME, FINALLY!!!

Yay! We are finally all home! Ava was discharged this morning around 11am. She weighs 5 lbs 2.9 ounces today. Tiny little peanut! We all went to pick her up. I went up to take care of all the paperwork while the boys ran around outside for a few minutes. We have a follow-up eye appointment next week (just to make sure her eyes have matured) and a newborn check-up on Friday. Other than that, we are home and ready for no sleep. Ok, maybe not ready but we know what we are in for ;-) I will write for the next couple days just to let you know how Lil Miss Ava is doing!

HOMECOMING

Well, in the spirit of the season of Homecoming, we got the good news today that Ava gets to come home TOMORROW!! She has passed all of her tests, is bottling well, and is consistently gaining weight. She is up to 5 lbs 2 ounces today. The doctor rounded on her this afternoon and signed off on everything so we can go get her in the morning (as long as nothing changes). We have finished everything for discharge except for the final paperwork which should go quickly. The three of us will head over mid-morning to pick her up and we can't wait!!

CAR SEAT

We have a 5 pounder!!! How exciting! So big, but still sooo tiny! Today was a busy day. Ava had a head ultrasound this morning. I do not have results yet but am not anticipating any problems. She has been doing really well on the 4 hour schedule and has been bottling like a champ. She also had her car seat evaluation today. First they get a baseline of the babies in their bassinets for 15 minutes. They monitor their heart rate, O2 sats, and breathing. Then, they put them in their car seat for one hour. They have to keep all of their numbers up for the ENTIRE hour or else they do not pass. They can not drop their heart rate or O2 below 80 for more than 10 seconds. To tell you how strict they are, Justin dropped his for 11 seconds with 4 minutes to go (because he was pooping) and they made him do it over. The whole one hour! Anyway, Ava passed! Just one more step in the right direction! We are just checking things off the list. I am thinking that if she doesn't have anything weird happen over the next day, she will be coming home on Wednesday! We just do one day at a time though!

SHE'S THE BOSS

Today, we don't have much to report. Ava is now 4 lbs 15 ounces. She is eating so well and even taken more than the ordered amount. The NP changed her orders to bottle ad-lib at a minimum every 4 hours instead of 3. She has to take higher volume that way but she is taking higher volumes as it is and needs more rest in between. Tomorrow and Tuesday will be very busy days. Head ultrasound and car seat evaluation tomorrow and Tuesday is the earlier possible discharge date. We'll see what happens! She is the boss-for now ;-)

AD LIB

I was right!!! Ava took off with her bottling last night and has taken every single one since yesterday. The NP switched her to ad-lib feedings this morning, no minimum, no maximum. That means that she can take whatever/whenever! She has been bottling like a champ all day. AND, they took out her feeding tube! It is the most exciting thing ever when you get to see their little faces without anything taped to it! We are getting closer every day. Over the next few days we will have different "teachings"and will probably come home on Weds. I think we will have everything done for discharge on Tuesday but will pick her up Weds morning. She gained 65 grams since yesterday and is up to 4 lbs 14 ounces. I think we will have a 5 pounder by the time we go home!

ON OUR WAY

Ava gained 30 grams since yesterday. She is up to 4 lbs 12 ounces! Her cheeks are really starting to fill out! She has been doing great at bottling, and getting better with stamina. I would guess over the next few days they will switch her to "ad-lib" feedings. That means that she can eat when she wants (but I think they still keep her to around every three hours) and eat the amount she wants. They average the amount over a 24-hour period. Sometimes she might take a lot, sometimes a little, as long as she is getting the right amount over 24 hours. We still have a few things to take care of before going home. She needs another head ultra sound (her last one was perfect), her car seat evaluation (to make sure she can keep her O2 levels up while sitting for an hour), and possibly monitor training. I am thinking and hoping she will not need a monitor but I am not positive. She needs to stay spell-free for the rest of her stay in the hospital. They scheduled her car seat eval and head ultrasound for Monday! I am not sure why, but for some reason they need to have their feeding tube out for the car seat eval. So, the docs and NPs obviously think she will be pretty much ready to go home early next week. YAY YAY YAY!!!!

ON A ROLL

It's amazing what happens when the docs and everyone leaves Ava alone (with no procedures)!!! Yesterday, I bottled her at 2pm and she took the whole thing. Then, she bottled EVERY one until 5am this morning. She did some full bottles throughout the night and some almost full! WOW!! She is a little tired this morning, it was quite the marathon throughout the night! We'll see how she does today at her 11am feeding. She is doing great without her aminophylline! She did have one brief spell yesterday while I was there but that's no big deal. I would imagine she will go home with a monitor (like Justin did) but that is fine. Also, she gained 70 grams and is up to 4 lbs 11.1 ounces. Getting to be a big girl!!

MY LITTLE ROCKSTAR

Finally, today we didn't have any tests, procedures, or baths. Just a quiet day to focus on bottles. The NP changed Ava's orders to bottle whenever she was showing cues, rather than every other. With the every other, it seemed like we were missing some when she was ready, and trying to feed her when she was not wanting to eat on her own. This way, we will only be looking at her for cues when she is willing and ready. It seems to be working! She bottled an entire feeding, which is now up to 42 mls, for me at 2pm and another one for the nurse at her 5pm feeding! She was really tired after her 2pm feeding but seemed to be ready again at 5!! Today is the day that she should have trouble without the aminophylline if she is going to have trouble. She seems to be holding her own and doing really well! Hopefully we can get by without it. She is also holding her temp really well without the isollette and gained an ounce since yesterday! She is now officially 4.5 lbs. All in all, a GREAT day!

BASSINET AND EYES

Ava gained a whopping 5 grams since yesterday, still holding steady around 4.5 lbs. She has been working really hard on her feedings and weaning from her isolette that she is burning more calories now. She will start gaining more weight over time. She is finally totally out of the isolette, even the warmer. Now, she is in a bassinet...the one that I said looks like a tupperware container :-) She is doing well with her bottling. She is actually really good at pacing herself. She just kind of poops out about mid-way through a bottle. She has been consistently getting about an ounce in and then they usually tube the rest. She will get better and better every day. It is hard for her because it seems like every day something new happens that makes her tired. Yesterday she had a bath so she was tired from that. Today, she had her eye exam and that is hard, so she is tired from that. Hopefully tomorrow she will have nothing! The eye exam looks good. Her eyes are still immature but no signs of ROP (retinopathy of prematurity). She will have another exam in two weeks. They typically continue the exams until their eyes are fully mature.

CHECKS

We are slowly but surely checking off items on the list before discharge. I forgot to mention that Ava had her hearing test yesterday and passed with flying colors. She was supposed to have her eye exam this coming Friday but they have changed that to tomorrow. I got to the hospital for her 11am cares and she took almost a full bottle for me. She is a bit tired as yesterday was a pretty busy day! She will have a bath this afternoon and since her temp has stayed up she will probably go to a basinet after that. She lost 10 grams since yesterday but again, busy day. So, we will just keep working on feeding and growing! That's all we have left to do!

FULL BOTTLES

What a great day today! We are finally back on track, no moves, no procedures, just a boring (but fun) day in Special Care. Ava is 4 lbs 7.6 ounces and looks great. Dr. Hoekstra rounded on her today and thinks she looks great as well. Yes, she has a big tummy but nothing to worry about. He said that sometimes preemies have dismotility (meaning things move slower inside) but as long and she isn't vomiting and she is pooping normally, she is just fine. She rarely has any desaturations any more so we discontinued her aminophylline again. Hopefully she is mature enough this time. I think she will do just fine. She hasn't had any spells in quite a while! When we moved back to the NICU she had just started weining to a warmer. But, when they go to the NICU, they automatically put them in an isolette. And, they wanted the ability to warm her because she wouldn't be dressed for the procedure. So, now that she is back in Special Care, we started weining her again. By tomorrow, as long as she holds her temp, they will put her in a basinet. The really BIG news for the day, she took a FULL bottle overnight last night and another FULL bottle for me at 2 this afternoon. It was my first bottle with her and she did so well. Dr. Hoekstra changed her orders from 1-3 bottles per day to bottling her every other, if she is awake and showing cues. If she is sleeping, they are not to wake her. It is still early on in the feeding process and we don't want to overdo it. It will still take some time to get her eating all 8 full bottles. If we push too hard, she will go backwards. So, we will take it easy and she'll be home before we know it! Can't wait!

ROOM WITH A VIEW

We are all moved back to Special Care today! We have a different bed spot and are actually next to a window this time...kind of nice! We actually didn't end up moving last night because it got late so we moved around 2pm today. It is a HUGE process getting moved from one unit to the other because they are separate hospitals. So, you basically have to start all over with weight checks, temp checks, new labels for everything, and normal cares. She has been bottling a couple times a day and takes about half the bottle. It's still a lot of work for her so hopefully this week we can focus on bottling rather than traveling back and forth! She had no weight change since yesterday and again, it is probably going to vary a little because we moved to a different unit. No other orders or changes. Dr. Hoekstra rounded on her today. Said she looks great and he is not worried about her tummy. I trust his opinion more than anyones! He is our favorite!!!