Sleepless in Rahway

So as you all know, yesterday was our big day - the biggest and best landmark Thursday - and it was just as amazing as I'd envisioned. I was finally that woman that all the other women smile at as they walk by in the hospital - the woman going home with her baby - or in my case, babies. I've been so pissed off that I wasn't that woman. I'll just come out and say it...every time that I walked in to or out of the hospital and I saw a woman being wheeled out of the post-partum unit holding her baby lovingly in her arms - I wanted to push her into oncoming traffic. There. I said it. Okay, obviously I wouldn't actually do it - but I'm sorry, but that's the extent of my jealously and frustration. Most of you will think that I'm out of my mind for thinking that, nevermind admitting to it - but I've learned that it's a pretty universal feeling among NICU moms - a feeling that only another NICU mom can understand. It would literally bring tears to my eyes to see these women. It's just another part of the baby-having process that I felt robbed of. I contemplated requesting a wheel chair yesterday and creating my own moment, but I stopped myself. haha (kidding people, no worries, I'm not quite that crazy). :-) Not driving up to the NICU everyday is going to be strange at first. I can't believe that the girls are really home after only 8 weeks. Though our days were long, the time really did fly by - and I can't believe that it's over. The past 8 weeks are a time that the girls will never remember, but Mike and I will never forget.

It was a long day and we finally got home with our little girls around 6pm. It would've been sooner, but about 1/4 of the way home I realized that I forgot my remaining breast milk in the NICU freezer and there was no way that I was going home without it! Pumping is my least favorite thing to do in this world. I do it for my girls because they're worth every drop - and I intend for them to drink every last drop of what I've made for them. So yes, Mike turned to me and said "Do you seriously want me to turn around for that?" and I insisted that he make the first possible u-turn. They don't call breast milk "liquid gold" for nothing! It's valuable stuff - and not to be wasted! So anywho, I digress - we got home around 6pm and the house was beautifully decorated with flowers, balloons and banners set up by Mike's sister, Marissa. It was such a nice welcome home to the girls.

The first thing we had to do was feed them. They were already an hour behind schedule due to the late discharge and my liquid gold fiasco. So yes, within minutes of leaving the hospital we'd already broken their feeding schedule. So we gave them their first meal at home and then we showed them around a bit. If they had the ability to express appropriate emotion, I'm pretty sure they wouldn't been super excited. :-) Within an hour of being home there was a poop-ridden outfit soaking in my bathroom sink. Within a few hours of being home there was probably about 20 burp clothes randomly left throughout the house with regurgitated milk all over them.

All this time we've been a mother and a father...going to the NICU a couple times per day...giving them feedings and baths - doing all that we can to interact with them and be a part of their NICU world - but yesterday it truly felt like we were mom and dad. One of the things that really bothers me about the whole NICU experience is that my girls are now 8 weeks old (as of today) and I feel like I don't even know them. I don't really know their likes and dislikes. I have no idea what their nightly sleeping patterns are like. Silly things like that I feel like I've missed out on and now I have to learn. Melia's primary nurse (who had Melia every time she worked, and so she also took care of Madison for a decent period of time also) told me the night before the girls were coming home that Madison tends to be very cranky after her 2am feeding and that she basically demands to be held after that time - to the point that another nurse once had to sit and hold Maddie while her primary nurse tended to other babies. Well, she speaks the truth, I can tell you that. Melia is pretty consistent, she eats, poops, sometimes poops while she eats to kill two birds with one stone and sleeps. That's it. She was really content just about all night long. Madison on the other hand wanted absolutely no part of sleeping - or being quiet. She was awake all night long, and not silently. She fussed from midnight until 6am - with a little 1o minute power nap every so often so she could regain the energy she'd just burned. I'm pretty sure she's nocturnal (she sleep so contently all day long today, so we'll see what tonight brings - but I think Maddie is going to need a lesson in nightime vs. daytime. So naturally, there was very little sleep going on - which of course, we anticipated - but I at least thought I'd get a couple hours here and there in between feedings. Not so much. I think I got a total of 40 minutes in. But anyway - who am I kidding - I probably wouldn't have gotten much actual sleep anyway.

We had our first family outing today - to the pediatrician. :-) The girls aren't allowed to go anywhere really for the next 8 weeks or so. We don't have to keep them quarantined or anything, but they can't be in public or crowded places - and when people visit them here they need to wash their hands really well and use hand sanitizer before every time that they touch the girls. I know it seems over the top for those of you not familiar with preemies, but this is very necessary to make every effort make sure that the girls don't get sick. Their immune systems are still so compromised and we all have to be extremely careful. So with that said, I love you all - but if you're sick or think you're becoming sick, don't you dare step foot inside my house. :-) Our pediatrician came recommended by one of the NICU social workers, and happens to also be the pediatrician of our friends Brian and Angelica's children, who were also born premature. We liked him a lot. He really took his time looking over the girls - and before coming in took the time to read through every detail of their medical records from St. Barnabas. In fact, he may have taken too much time. The girls' appointment was at 1:30pm, made at that time purposely by the nurse because it's the first appointment after lunch - this way, the girls could go immediately into an exam room rather than be in the waiting room for a prolonged period of time, exposed to too many people and sick children. When I made their appointment, that alone made me feel really good about the practice. Once the nurse knew that they were preemies, she knew that they needed a little extra special care with something as simple as not having them wait in the waiting room too long. Unfortunately, as thorough as their doctor was, it took a little more time than the girls would've liked. By the time the doctor was done reading their medical records and gave them a full exam, our 1:30pm appointment didn't end until 2:45pm - and of course, the girls were due to eat at 2pm and were screaming bloody murder by the time all was said and done. Luckily, my mind isn't completely fried yet and I grabbed a couple bottles and threw them in the diaper bag, just in case the appointment was longer than expected. Seeing how hungry and hysterical the girls were, the doctor told us to stay and use the exam room to feed the girls before we left. Another thing that gave me a really good feeling about this pediatric practice. So there we were, 3pm, feeding the girls in the pediatrician's exam room. Haha. It was pretty hilarious. Our first outing was quite the debacle - every time I put one of the girls in or out of the car, I manage to loosen an electrode on the apnea monitor and a piercing sound soars through the parking lot or my driveway - and of course screaming babies, timing not going on schedule - you know, the usual chaos to expect from now on. Chaos drives me nuts, but truly, I welcome it.

Speaking of the apnea monitor - we've had some alarms already. Some false, where the electrodes loosen or aren't picking up properly - and others that were legit. I'll just keep it short and sweet on this and say that I'm very glad that we decided to get them.

Tonight we gave the girls their first real bath - semi-submerged in water because I couldn't quite get those slippery little critters fully submerged with one hand on her and the other on a washcloth without feeling like I was going to dunk her completely. They didn't handle it as bad as expected. Melia had her moments, but actually seemed to like it for the most part. Madison didn't seem to hate it, but I wouldn't say it was her favorite thing to do. What is Madison's favorite thing to do? Today, it was sleep. Of course, after not sleeping all night, Miss Madison decided to sleep all day today. Mike set up the swing, so when she did have her very few fussy moments today, we put her in there and I think we may have found a way to calm the beast!! :-) Given her sleep habits today, I don't see much sleep again tonight. I swear this kid thinks she's a hamster - if she had a wheel, this little nocturnal baby would spin on it all night long. So..let's see what tonight brings.

My friend Ileana sent me a text message yesterday night asking me if I've ever been happier. My response: "No dude. Definitely not. This is happiness at it's finest." And there's not much more I can say than that.

**I'm going to make a separate posting with pictures from the girls first night and day at home so make sure you check it out**

Sorry guys, but I just can't do it...

I just logged on here with full intentions of blogging. The girls are finally home! I have tons of thoughts...tons of things that I want to share - and I will...just not right now. Now that they are here with us, I just can't take my eyes or hands off of them long enough to share with the world at this moment. I laid Madison beside me on the couch, and she's perfectly content, but I just have to hold her. I promise I won't be one of those moms who never ever puts her baby down, but tonight - just for this one night, I need to spoil her. No, that's not true...I have to spoil MYSELF with holding her. And when I've satiated my need to hold her until she's had enough of me...well, I have another little girl to do the same with. How lucky am I? :-)

So for now I'll leave you with a few pictures that we took today - and I promise to fill you guys in on all the rest tomorrow. Stay tuned..

Finally home, lounging with daddy watching the Mets game. So today, we experienced our first loss (the game isn't even over yet as I type this, but I'm assuming that 5 straight games is all they can pull off). Lia is on the left and Maddie is on the right.

Melia looks very happy to be heading home...



The girls are in their car seats at the hospital and ready to go HOME!

I see the light....

...at the end of the proverbial tunnel....the St. Barnabas tunnel. I was initially hospitalized on April 27th. Since that time, our lives have revolved around St. Barnabas. I was admitted for a week, discharged home on strict bedrest and would return to the hospital weekly to see the high risk doctor. I lasted two weeks at home before be readmitted for good on May 18th. That day St. Barnabas became our home. After the girls arrived on June 5th and I was discharged from the hospital on June 9th for the final time, the daily visits began. Our lives have completely revolved around St. Barnabas for months. The idea of not driving there everyday, multiple times per day, is like a foreign concept to us.

My mother-in-law said over the weekend that Melia wasn't going to leave the hospital without her sister. I thought to myself, what a nice way to think of it. Melia has had one foot out the door for weeks. She wasn't expected to still be in the hospital by the time Dr. Kamtorn returned from vacation, but little things she would do here and there (not taking a feeding or two, having a sleep apnea episode a few days ago after not having one in so long) kept the covering doctors from discharging her. I'd like to believe that my mother-in-law is on to something here - that Melia was messing with us so that she'd stay there with her sister. (Isn't that a nice thought? I'll have to remind them of this in about 14 years when they're fighting over boys and clothes) If this was Melia's plan, it looks like it just might have worked....

I received a phone call from Dr. Kamtorn while we were on our way to the hospital yesterday morning. She said that she missed all of her babies and was anxious to come home over the last few days of her vacation - and I believe her - she's just that kind of doctor. She's also the kind of doctor who believes that the best place for a baby is at home. So the next thing she said was that she was getting discharge started so that both girls could come home this week. She said "Can you handle that? How bout Wednesday?" - I was speechless. BOTH girls? This was a shocker. She went on to say that she reviewed their charts and is aware of everything that happened while she was away. She said that the girls are definitely ready and the only thing that could hold Madison back is if she can't maintain her temperature in a crib. She had just been taken out of her isolette and put in a crib the night before, so she still needed to prove herself in this area, but aside from that, she's ready. We spoke for a little while longer and I honestly can't tell you what else she said. I was in disbelief and everything else is a fog.

I got off the phone with her and told Mike that Dr. Kamtorn was looking to discharge the girls on Wednesday. He started asking questions - questions that I couldn't answer because my conversation with her was already a blur. I figured it was okay since Madison's primary nurse was working and she'd be at the hospital ready to answer all of our questions. Next Mike said, "Don't I work on Wednesday? And isn't our discharge class not until Thursday?" - Oh crap! Now what? Mike works 2 days per week and of course their discharge would be scheduled for a day that he's working - what are the odds? And Mike's prescheduled vacation is actually scheduled to begin immediately after Wednesday's shift. But, since our discharge class isn't scheduled until Thursday afternoon, the girls discharge might be pushed back for one day, which would work out perfectly with Mike's vacation schedule. We can take the discharge class in the afternoon and leave immediately afterwards with the girls in tow.

By the time we got to the hospital, discharge planning was already in the works. As soon as we finished feeding the girls we had a meeting with the discharge case manager. She took some information and had us sign some paperwork to get things started on getting apnea monitors for both girls. So yes, both girls will be coming home on apnea monitors. Madison hasn't had a non-feeding related episode in 6 days and Melia hasn't had one in 4 days (the girls having apnea/brady episodes while eating doesn't count towards episodes that would be reviewed to make a decision as to whether or not an apnea monitor should be issued - sleep episodes are the ones of concern with this). So Melia needing a monitor is more warranted than Madison, but at our request, they'll send both girls home on the monitors. The peace of mind is worth it. So at some point today we're hoping to be able to get our training session on how the monitor works, as well as infant CPR training.

Yesterday wasn't only a big day for us. The girls had a big day too, full of discharge preparations. After meeting with the discharge case manager, we reviewed information to get immunizations started on the girls. Yesterday they had their Hep B vaccine. They are still a bit too young for the rest of their immunizations, so they'll get the rest of them on an outpatient basis with their pediatrician. Thankfully the girls handled the vaccine well and didn't have any type of reaction to it. After the immunization, Madison had her hearing test (which Melia had already, but Madison wasn't able to have at the same time because she was still in the isolette). Madison passed her hearing test without any problems. When we returned for their 8pm feeding we were told to bring in their car seats for their car seat challenge. Every NICU parent knows what it means when you see another NICU parent walk in or out of the unit with an empty car seat. When we see each other toting the car seat, we congratulate each other and get really excited - almost like we're giving each other a telepathic high-five in our heads. Last night we walked into the hospital toting those car seats with huge smiles on our faces - realizing that the only people who really know the true significance of toting that car seat around are the other NICU parents.

The car seat challenge is simply sitting the girls in their car seats for an hour to ensure that they can handle being in that position without having any dips in their oxygen or heartrates. Sitting in car seat can put their heads in a position to block their airways since they are still so small and their heads so unstable. This proved to be a little more challenging for Madison than for Melia. Maddie looked sooooo small in her car seat and she seemed all scrunched up. Melia on the other hand looked totally fine and not at all uncomfortable (this after she screamed her head off as I strapped her in). Also, it's a little test for mom and dad to make sure that we know how to adjust the car seat straps and can put the girls in and out of the seat without any problems. All four of us passed our test. Even Maddie, who was all scrunched up and looked so uncomfortable, was able to get through the entire hour without a single desaturation.

In between our visits yesterday we took care of some last minute things around the house. We put together their bouncy chairs. We made a list of last minute things that we need to get before they come home (premie and newborn diapers topping that list). And we put the pack n play together, which has a double bassinet on top and will be used for them to sleep in (in our bedroom) until we're comfortable enough to put them in their own room. With the pack n play now set up in our room, right next to my side of the bed (Mike is jealous, he wants the girls to be on his side of the bed - lol) I just laid there staring at it. Mike looked at me and said, "You're staying up staring at that thing and they're not even in there yet" - and he's right. I couldn't take my eyes off this pack n play for some reason. I was just laying there imagining them being in there and it was so surreal. After all these weeks without them home, it's so hard to imagine them actually being right next to me. In the middle of the night I can hold them and feed them myself rather than calling their night nurse to see how they're doing. I can't wait to see if Melia will continue to sleep this soundly....

Probably not right? Haha. That's okay. I look forward to even those sleepless nights just to have them home with me. So we're set up. We're ready to go. We know that the girls can handle the car ride home - now, just to get them here.

Weekend Recap

The weekend was fairly quiet. Since the girls have been in the step-down unit everything has been going pretty smooth. Dr. Kamtorn comes back from vacation tomorrow and I'm very interested to see what she has to say about the girls.

Melia is doing so well that nurses and doctors are making comments and asking questions about what she's still doing there. Her primary nurse told us to get ready because she thinks she'll be home before the end of the week! She seems to have really mastered the art of breathing while eating and over the past 2 days hasn't had a single brady/apnea episode while eating or otherwise. A few nights ago she did have an apnea episode in her sleep. She had at least one for 3 days/nights in a row, so this makes her a candidate for a take home apnea monitor. The social worker in charge of the apnea program asked me if it was something that we'd be interested in, and while I can't wait for my little ladies to be completely wireless, the peace of mind that comes along with her coming home on a monitor is far more important. So, barring some unforeseen event or change in circumstance, it looks like Melia will be coming home on a the apnea monitor. I'll go into more detail on the monitor and what it does in a future blog if she does in fact come home with one, but for now, let me not get ahead of myself. She's up to 50mls of milk every 3 hours now and weighs 5lbs 3oz as of tonight. The past couple days I've taken some funny pictures of Melia. The first one is from Saturday night after her bath. I put the towel around her head to keep her head warm while we waited for the nurse to bring the scale over for her to get weighed. All the nurses got a big kick out of her head wrap. :-) The second one is from today. Her green sunglasses with fruit on them match so perfectly with her watermelon outfit that I just had to get a picture! Madison was wearing her watermelon outfit too, but we tend to torture Madison with these things a little less since she's in the isolette and trying to grow. Once she's in a crib, let the torture begin! Haha.

Madison is now taking 40mls of milk every 3 hours. The extra calories that she's being given twice a day in the formula seems to be doing the trick. She's gained weight every night since and is now only a fraction of an ounce away from the 4lb mark, weighing 3lbs 15.8oz as of tonight! Tomorrow should be the big 4lb day! Now that she's hit the magic 1800 grams that the nurses were waiting for, she'll be put in a crib tonight! This is so exciting for us. Mike and I were talking on the way home from the hospital tonight about how amazing it is that we get so excited for these little things. But for Maddie to be in a crib makes such a huge difference. Being out of the isolette means no more plastic walls in between us. No more changing diapers and dressing her through little hand holes in a plastic wall. Her being in a crib will give us immediate access to her. Even that statement alone seems so strange doesn't it? All this time - her 7+ weeks of life - and I've never had immediate access to her. Only recently have I been allowed to take her in and out of her isolette without the assistance of a nurse. Allowed. Ha. All this time I've been told what I'm allowed to do with my own daughter. And every day I'm allowed to do more and more, which is like a privilege. It's such a strange feeling. Something I never thought I'd have to experience. But you know, it makes me appreciate these little things all that much more. I'm looking forward to going to the hospital tomorrow morning in a major way - all because tomorrow there won't be a single thing in between me and both of my girls.

Step Down is a step up

Today's post is going to be short and sweet because it's after midnight and I'm exhausted, but I didn't want to go another day without letting everyone know what's going on. Especially since we have some good news - the girls have been moved to the "step-down" unit!! This is just another room in the NICU where babies go just before discharge. Babies in the step-down unit are expected to be discharged in 1-2 weeks. This is the final stage! The final move for the girls before they move right on out of there!

When we walked into the NICU tonight we couldn't believe that the girls had been moved. I mean, just this morning Melia completely spaced out on her 11am feeding and it took me (and 2 nurses) over an hour to get her to take her entire bottle - she had multiple bradys during her feeding and was like a completely different baby than she's been recently - it was like she totally forgot how to eat. Madison took her full bottle, but not with as much enthusiasm as usual. Mike and I left there this morning talking about what a bad visit it had been. So to come back in the evening and have them moved into the step-down unit, it was a real shock to us both. A shocking, yet pleasant, surprise.

Madison is still having trouble gaining weight, so they put her on a 24 calorie formula twice per day. Breast milk has 20 calories. The fortifier that Melia is on adds another 4 calories to her breast milk for all of her feedings - which helps her gain weight. The fortifier has been tough on Maddie's stomach the past couple times that they've introduced it, so they are trying to get her to gain without giving her the fortifier. This formula will give her 24 calories for those 2 feedings per day and they're hoping that this is easier on her stomach and will do the weight gaining trick. Yes, apparently an extra 8 calories per day can help her gain weight. Crazy isn't it?

Once again, things changing (without warning) by the hour over here. Let's see what tomorrow will bring....

Day 46

Today was a quiet day, which is shocking considering the fact that Mike was working and the girls tend to "misbehave" when mommy flies solo. But not today. Today was a good day.

The girls had the second part of their eye test yesterday. I didn't find this out until today, which I find odd, but whatever. They had the test at about 4:30pm and apparently had a rough time with their 5pm feedings (Maddie having a harder time with it than Lia), but other than that they didn't show any signs of distress from the test. I mean, Mike and I didn't notice a thing last night because they did so well with their feedings and everything, so obviously they weren't that stressed by it. The test came back with normal results again. Their eyes have progressed, but are still incomplete, which is normal for their gestational age. Their eyes should show as complete closer to their due date. So they'll get another test in 2 weeks. I'm not expecting Melia to still be in the NICU in 2 weeks, and maybe Maddie won't be either if her infection proves to be gone for good and she continues to do well - so we will probably need to bring them to the opthamologist for their next appointment.

Tonight at midnight will be Maddie's last dose of antibiotics, so the next few days will be telling. Hopefully since her infection was identified this time around and treated with the right antibiotics, it won't resurface. She's up to 34ml of milk every 3 hours and is tolerating her feedings very well. This is huge for Maddie since before she wasn't able to get past the 22ml mark without getting sick. After 3 days of not gaining any weight, she finally broke through and gained 15 grams today, so she's now 3lbs 13oz and hopefully on the fast track to 4lbs! Her length was measured last night and she's now 15 3/4 inches.

Lia continues to grow, grow, grow. Tonight she's up to 5lbs 2oz! And as of last night her length stands at 18 inches! It doesn't surprise me that she grows so well with the amount of time she spends sleeping. These girls are living proof that babies grow when they sleep. Lia sleeps and grows like crazy while Maddie, lil' miss busy body, spends the majority of her day awake and just looking around - burning calories! Lia is steady on 45mls of milk every 3 hours and continues to tolerate this amount well.

Both girls are working out acid reflux issues, which is normal for premies. But when they reflux, it's not like a full term baby that might just spit up, cause a mess and cry from the discomfort. When premies reflux you have all that plus the added possibility of a brady episode. They've had a little reflux since they first started eating, but now that their feeding amounts are more substantial, the reflux is really evident. Maddie tends to reflux after she's done eating and gets put back in her isolette - she'll brady (or come close to a brady) almost every time. Lia actually refluxed today before her feeding. Her previous feedings milk must've really come up good and it really messed with her body - she had a pretty bad brady and needed oxygen to get her out of it. Once it was over, she was fine and she took her bottle like a champ. Once the get closer to their full term gestational age, the reflux should go away - and if it doesn't - well, that's what pepcid, burp cloths and ear plugs are for! :-) The main thing is that once they get closer to full term, at least a reflux problem won't make them have problems breathing.

The past couple of days I've been working non-stop on the nursery and it's as good as done now. Everything is set up and ready to go. All we need now are babies to put in it. :-)

Day 45

Daddy Blog: Progression. We are starting to see it at a very nice pace at this point. Both of my little ladies have shown it to us in their eating abilities. No more than a week ago, we would have to stare at each of them, and pull out bottles to remind them to breathe. But now they are realizing what eating and breathing entails. Its been so amazing to watch this happen. Back when they first started on the bottles, you would have to yank it out of their mouth, and then watch their numbers crash. Your heart rate would increase, as theirs decreased. The nurse would have to grab them out of my hands to bang on their back. But now, they take the bottle, and chug until they have to breathe. They stop eating, and take a few puffs, and then continue on. Its great not to be on edge with every insertion of the bottle nipple. Now don't get me wrong, they still have their moments. For example, today Lia coughed up a little of her food, and you can see it went down the wrong tube, and she crashed. But I don't get as nervous as I used to. I feel I can handle it now. I just calmly put the bottle down, and start assisting her out of her moment. She catches her breath, and looks to carry on. I guess in a way, I'm progressing too.

Staying on tonight's topic, we have a 5 pounder in the house!! Lia crossed over tonight, weighing in at 5lbs 1oz! It was a monumental moment, and it was the first time in a while that we took a picture of one of them getting weighed. It was bath night, so after being aggravated by mom, she took her bottle pretty well. Maddie on the other hand, has slowed a little in terms of weight gain. She did not gain for the third straight day. I'm not to concerned about it yet. We have been told that sometimes they plateau, before moving onto the next step. Plus, she is coming off the electrolytes and lipids, and getting all of her nutrition from feedings. I think she just needs to get a little more food, and she will be fine. Maddie was so awake after her 11 o'clock feeding. She seems to be the more inquisitive of the two. She just looks around at her surroundings, and I just wonder what goes through her little mind.
I'm very pleased with the progress of both of my girls. I think they are doing great. As Amanda said yesterday, I would just like to reiterate my thanks to all of you for all that you have done for us. We have a beautiful nursery that so many of you helped fill. It now seems that sooner, rather than later, our nursery will be complete, when our little angels arrive.

**top two pictures are Melia - bottom picture is Madison**

A day dedicated to celebrating and welcoming my girls...

Anyone who knows me well - actually, anyone who knows me at all - knows that I cannot stand a mess. I have a slight case of OCD when it comes to organization. The hardest part of being on bedrest for me wasn't the boredom or discomfort of the whole thing - it was the fact that my house was becoming disorganized and things weren't in the exact place that I wanted them to be in my hospital room. Even at work, I can't get anything done unless my desk is clean and everything is in it's place. I just can't focus when things around me are a mess. To that same effect, when I type this blog, I do so at the end of the night, when the laundry is done, the dishwasher is running and the house is in order. Tonight would be the exception to this rule. Tonight I blog in my living room - completely surrounded by boxes upon boxes and bags upon bags. I could easily take my laptop up to the bedroom and blog in the cleanliness that I usually prefer - but why in the world would I do that on a night like tonight. I sit here so totally content in my mess of pink. My living room, garage and nursery look like a pink bomb went off - twice! From car seats and toys - to bottles and baskets - to the most adorable clothes and most thoughtful and beautiful handmade gifts - I sit here and basque in it all.

For those of you unaware and wondering what the heck I'm rambling about - today was my baby shower - rescheduled from it's original date in May. When planning for my shower began my mother had one main request - that the shower be held early, just in case I went on bedrest or the babies came early. She wanted to make sure that we'd be ready early - and if everything worked out and the girls didn't come early, well then that would be just fine - but she wanted us to be prepared if the unexpected happened. So, the shower was planned for May 17th for babies who weren't due until 3 months later on August 20th. But, unfortunately, I couldn't quite make it even as early as May 17th since I was hospitalized for the first time on April 27th and was on strict bedrest from that point on. The shower was then postponed to a later date - a date to be determined after the arrival of the girls - that date turned out to be July 19th.

I wasn't sure how I was going to feel today. It was a sort of bittersweet experience - and truth be told, I was kind of dreading it at one point. I wasn't sure where I'd be emotionally on a day like this - one more reminder of my body failing me - my baby shower minus my babies kicking around in my belly. A baby shower is the one event in a woman's life where she is praised for being nice and big! Fat equals cute at a baby shower and showing off the baby belly is all a part of the fun. And quite frankly, I felt robbed of this experience. Instead of finding something to showcase my baby bump, I worried about finding something decent to hide my baby weight. So yes, going into the shower, I felt robbed - but coming out, I felt overwhelmingly loved. Friends who live far away drove many miles to come celebrate the birth of my girls. Friends who have important things to take care of at home took time out of their day to spend it with me. Family and friends spent countless hours planning to make this day perfect. I was "showered" with more gifts than I can count, leaving my registry just about empty and my house full of everything that we could possibly need for the girls - and then some! I can't accurately express how lucky I feel to have so many extraordinary people in my life and how very grateful I am that these same people will be in the lives of my girls.

Looking around at the giant pink mess that surrounds me it's becoming all that more real. It's hard now, having to visit my children. I know that they exist, but it's like they're not here because, well, they're not HERE. Now that the shower is over and we can put the final touches on the nursery - we can install the car seats in the car - fill their closet with clothes - add baby products to the linen closet - it's like just now it's become real. The girls are making progress everyday and will be home before we know it - and now, we stand as prepared as we can be. Not prepared of course for what parenthood really entails because there's no way to really prepare for that. Not prepared for the fact that this pink mess that's taken over my house today is just the beginning of my loss of control over messes that will be all over my house in the weeks, months and years ahead. But with the generous gifts, and the genuine support and love that we've been shown, we stand as prepared as we can possibly be - and for that, I thank each and every one of you reading this right now. Whether you were at my shower today or not, if you are reading this blog, you are showing your support and love for all four of us. I thank you. Mike thanks you. And our little baby angels thank you.

Speaking of the little angels - here's the latest....

Madison continues her antibiotics. Her spinal tap drawn last Saturday has now been watched for 7 days and never turned positive - PHEW! The latest blood culture taken on Wednesday also remains negative - so the antibiotics are definitely combating her infection. As of Friday, she is no longer on caffeine, so now the true apnea/bradycardia test will begin. The caffeine in their system is something that helps keep their heartrates elevated and helps them remember to breathe. Now that she's off of the caffeine we have definitely noticed some drifting in her heartrate - but this is all normal and to be expected. She is now 3lbs 12.7oz and on the fast track to the 4lb mark! Once she hits that milestone she'll be ready to be put in a crib! She's taking 28mls of milk every 3 hours and so far is tolerating this amount very well. This is the largest amount of food that she's ever reached, so I'm hoping that her tolerance is an indicator that her digestion issues have subsided. She took her bottle better than ever tonight - finishing the entire bottle by pacing herself perfectly, and so she didn't desaturate once. Yay Maddie!!

Lia continues to do really well. She is no longer on caffeine either, as of yesterday. So far we haven't noticed any drifting in her heartrate, but it's something for us to be aware of in the days ahead. As of tonight she is weighing in at 4lbs 15oz - soooo close to that 5lb mark that I think she might just hit it by tomorrow night! She's still taking 45ml of milk every 3 hours and other than reflux issues causing her to spit up at times, she's tolerating her feedings very well. She had her hearing test yesterday, which is basically just ear muffs over her ears which make noise to stimulate nerve receptors. Bands are placed on the front and back of her head to measure this stimulation to the noise to determine if her hearing is on par - and sure enough, she can hear. I never really had any doubt about this - I mean, I don't think that this little girl would be able to scream, yell and grunt so loudly if she didn't have the ability to hear. :-) Lia too had her best feeding so far tonight - taking her entire bottle without a single desaturation. She actually paced herself really well and didn't need me to pull the bottle from her throughout the feeding like I usually need to do. Yay Lia!!!

That's a wrap for tonight. We'll see what tomorrow will bring....

Day 39 and Day 40 (35 weeks)

The girls have continued to do well over the past couple days. Things have been so up and down, especially with Madison, that's it's almost too good to be true. She looked tired tonight and had one brady episode, and my mind automatically starts to think that something is wrong. I think maybe my mother's intuition is turning into paranoia. I asked her night nurse to pay close attention to how many bradys she has tonight (if any). I'll definitely be calling in the middle of the night to check on her and if she's had any more, I'll ask to speak to the doctor. I hate to be this way - thinking that just because she's sleepy that's something is wrong - sounds ridiculous to most people I guess - I mean, babies sleep, that's what they do. I don't want to be that mom who freaks over every little thing, but all things considered, I just can't help myself. Aside from being a little on the sleepy side, and that one brady episode, Maddie looked really good throughout the day. She was very alert and active at certain times during the day and her color is looking better than ever. The doctor drew another blood culture yesterday and so far it's negative (but this type of Staph infection can take up to 48 hours to grow in a culture, so we still have to wait it out for the final result). The deal is that she'll have to be on the antibiotics for 7 days after a negative blood culture is drawn - so hopefully this culture stays negative so she can be done with the antibiotics and IVs in 5 days. The spinal tap culture is still negative also, which is excellent news. They took her off of lipids and electrolytes today since her feedings have been increased up to 25mls every 3 hrs and she's tolerating these feedings well (this is a part of the reason that my paranoia has set in - every time she gets up to this amount of milk, she gets sick - but hopefully her tummy is past this). She is taking all of her feedings by bottle and is doing excellent with this - taking 100% of her feedings by bottle and not requiring the feeding tube at all, so it hasn't had to be put back in - hopefully as her feedings increase she can continue to do this well.

Melia is also taking all of her feedings by bottle. For 2 days now she has taken 100% of her feedings by bottle - so Melia is now tube-free also! We can finally see the both little ladies without tape on their face or tubes in their nose or mouth. Melia is up to 43mls every 3 hrs and is tolerating this amount very well. She's still having some trouble pacing herself during feedings. Mike and I really have to pay close attention to her sucking and breathing to make sure that she doesn't desaturate or brady during a feeding, but as long as we pace her, she does really well. She had an apnea episode last night while she was sleeping for the first time in a long time, so that's something that the nurses will keep a close eye on. But most times, she does very well with her breathing while sleeping. There hasn't been any further mention of her going home, but now that she's taking all of her feedings by bottle, I can see the doctors dropping that on us any day now!
Tomorrow the girls will be 6 weeks old. Next Thursday will be the 36 week mark gestastionally - this is their "target date" to go home and I can't believe that Melia may actually be home on or about her target date. Looking back at pictures from June 5th until now, I can't believe how much progress they've made. It's so amazing - THEY are so amazing!

Day 38

Today was a good day - with some possible signs that things are going back upstream.

The official identification of the bacteria that caused Madison's infection is Staphylococcus S. warneri. Makes total sense right? Ha. When the doctors show me these reports and say these words, I just laugh and ask them to speak English, or even Spanish - I understand Spanish better than I understand all this medical mumbo jumbo, though I'm pretty good at the NICU terminology, this micro-biology bacteria species identifying stuff, I just can't wrap my head around. The long and short of this Staph S. warneri is that it's a common bacteria found on skin - found on all of our skin. It can cause a bacterial infection in premature babies, or any person really, who has a compromised immune system. It should be easily treated with the antibiotics that she's being given now (clindamycin and vancomycin, which she will be on for 7-10 days at least) and she seems to be responding well. So well in fact that she pulled off her nasal cannula today and the nurse didn't even notice because her oxygen was so good on her monitors. Since she proved that she was able to do it, the doctor decided to take her off of the nasal cannula today and let her try the breathing thing on her own - and she's doing really well (so until she gets her feeding tube back in, her little face is tube-free!). This doesn't surprise me, I knew she'd do well without the cannula. Last time they took her off the cannula I think it was just bad timing because she was getting sick, so she was having a lot of brady/apnea episodes due to being sick. Now that she's feeling better, she's able to handle it. Also, the doctor is letting her start eating again to see how her stomach can handle it. Her first feeding was at 4pm today and she was given 5mls by bottle. She must've been so happy to have even that little bit of food back in her tummy! When she's allowed to eat, Maddie loves her food, it's just that she has to be taken off of food so often with all of her illnesses lately! Poor thing. Her spinal fluid culture is still being watched (it will be watched for 7 days) and it has yet to turn positive, meaning that the infection does not seem to be spreading into her central nervous system. The doctor is waiting until tomorrow to draw some more blood and do another blood culture to get confirmation that the antibiotics are combating the Staph. Until then, Maddie is up to her old antics, climbing all over her isolette and letting us all know that she's feeling at least a little bit better.

Melia is doing well. She's taking all of her feedings by bottle, and finishing most of them this way. Last night and this morning she had to finish her feedings by tube, but she has finished all of her other feedings by bottle for the past couple days. We need to pay close attention to her and pace her because once she gets into a zone she starts chugging and totally forgets to breathe, but still, she's doing really well. Once she realizes that she needs to pace herself and breathe, she'll be good to go. They say that once this clicks with premies, they'll remember to do it all the time - so we just need that final piece to click for Melia and she'll be on her way - literally - on her way home!

Quick Daddy take: I gave Melia her 11 o'clock feeding today. She did so-so with it. Like Amanda said, she is forgetting to breathe at times, but her suction is very strong. So strong in fact, that I can feel her swallowing. She took more than half her feeding, but then she lost some interest and preferred to go back to sleep. But tonight the girls were in the mood to show off. Amanda fed Melia and she finished her whole bottle in great time and hardly desaturated at all. I held Maddie, and I have to say she has never looked better. She is tube free right now, and she was very alert tonight. There were times I felt she was looking right into me. She wiggled the whole time, and I was wondering if she was planning her escape from that place. I feel so good about tonight's visit, and after this weekend, I really needed it.

Day 37

Today was a better day. Maddie seems to be looking okay - and screamed through her entire bath tonight, so she's definitely got her attitude back - not that she ever really lost it this time around. They were FINALLY able to identify the bacteria from the blood culture that was taken on Friday night and it turns out that it's a strain of staph infection. This is easily treated with antibiotics, but apparently it isn't combated by the cocktail of current antibiotics that she has been on - so this can explain why she became sick again only a week after seemingly getting better. The antibiotics she was on before, and on this time up until today, worked to an extent, but not completely because they aren't the appropriate medications. So they changed her antibiotics - leaving her on two different antibiotics that can combat this staph infection. So hopefully she'll start to really feel better in a couple days - and hopefully this time, she'll stay that way! She'll be on antibiotics for possibly 2 weeks, so Dr. Sanchez (our doctor while Dr. Kamtorn is on vacation) is going to put in a PICC line tomorrow. If you remember from when the girls were first born, the PICC line is a central line that they put in so that all of the medications, fluids, etc. can go through one line. Madison's veins are so shot from the constant IVs, that they can't find enough veins to keep moving her IV every couple days (which needs to be done to prevent additional infection). Once the PICC line is in, it can stay in place until all the antibiotics are complete so she doesn't have to be poked and prodded every couple of days with nurses/doctors looking for a vein to put an IV in. They increased her lipids today to help her gain weight. She had lost a little bit of weight yesterday, but today she went back up and she's 3lbs 8oz as of tonight.

Melia is doing good. They increased her bottle feedings again to every feeding. She did really well with this throughout the day, but tonight, for the first time in days she couldn't finish her bottle and had to have the rest put through the feeding tube. Tonight was bath night, so I don't know if giving her a bath exhausted her or what, but her 8pm feeding (which is usually her best feeding because she's usually the most awake and alert at this time) didn't go well - she desaturated her and there and even had a couple bradys - she couldn't seem to coordinate her breathing while eating as good as she usually does. But, this is expected since she's still learning and trying to build up enough energy to do every feeding by bottle. Melia gained weight since yesterday too, now weighing 4lbs 8oz.

Hopefully today is the beginning of moving forward for Madison. I'm not worried about Melia not being able to handle all of her feedings by bottle - I know she'll get there in the next couple days. My girls are strong. They're fighters. And they're stubborn - insistent on doing things at their own pace - and as long as they're healthy, I can deal with that.

Weekend Recap

It was a rough weekend. Madison's infection is worse this time around. It's strange because she doesn't look as sick as she did a couple weeks ago when she was sick - she's very alert and overall looks really good considering how sick she is. But her blood work and testing is showing a more significant infection than the last time. She's on a triple cocktail of antibiotics and it seems to be working against the infection. Her CRP got as high as 4.8 on Saturday afternoon before going back down this morning - this of course is good news because it shows that the infection is not getting worse. But, the main problem right now is that yesterday afternoon the blood culture that they took on Friday night and were watching, turned positive. The good news (if we can call it that) with the blood culture turning positive is that now the infection that she has can be identified. The lab should now be able to identify the germ and then the doctors will be able to figure out exactly how to treat it and this guessing game about what type of infection she has can come to an end (we're waiting on those results). The bad news is that the infection now has the potential to spread. If the culture had stayed negative, it would be a good sign that the infection was localized to the stomach, but with the culture turning positive this means that the infection she has in her stomach has the potential to spread to other parts of her body - the biggest concern here being that the infection will spread (or has already spread) to her central nervous system. So, in order to test for that to ensure that it's caught early on is to test the fluid in her spinal cord, so yesterday afternoon she had to have a spinal tap - yes, a spinal tap on my little baby girl. The spinal tap testing is done in a similar fashion to a blood culture. They collected spinal fluid and they did a preliminary test to check for bacteria in the fluid (which thankfully came back negative) and now they watch the fluid to make sure that no organisms grow over time. Hopefully tomorrow we'll have more answers as to what exactly this infection is and we can make sure that it's being treated with the right medications. Another thing that we noticed tonight was that she spit up a little bit of what looked like old blood and mucus. This same exact thing happened last time towards the end of her sickness and the next day she ended up vomiting blood. So we asked to speak to the doctor and they suctioned out what was in her stomach and drew up some more old blood and mucus until it was all cleared out, so hopefully that little tummy cleansing will prevent anything more serious, like another ulcer. Since the antibiotics were started up on Friday night she's had much fewer apnea/bradycardia episodes, and again, her blood work is showing some steps in the right direction - so it seems that the antibiotics are doing the trick - hopefully for good this time.

Meanwhile, Melia is doing great. She basically has one foot out the door. Every doctor that examines her during morning rounds tells us that she'll be home very soon. She has been doing great with her breathing and hasn't needed the nasal cannula back on in a couple days now, not even when she's eating. Yesterday the doctor said that they could try giving her every feeding by bottle. She did really well with this yesterday afternoon and even last night as she took all of her feedings by bottle and finished them. But this morning she got really tired. She took her entire 8am feeding by bottle, but she desaturated towards the end and then she couldn't finish her 11am feeding, so they gave her the rest by tube and then she desaturated a bit during her 2pm bottle. Given Madison's illness, the nurse asked the doctor to do a blood panel just to make sure that these desaturations were a result of Melia being tired, and not something more, like an infection brewing. Fortunately, all of Melia's blood work came back normal, so she's infection free and nothing appears to be on the rise. So they just decided to give her a break with the bottle feedings to relieve any exhaustion that she feels. So her 5pm feeding was given by tube and then she did really well and finished her 8pm feeding without any problems (except a small brady/apnea episode as she took her last sip of her bottle). So for right now the doctor decided to go back to giving her every other feeding by bottle, thinking that maybe every feeding was a bit too much for her - but she'll work her way up to it quickly I'm sure. Earlier today I was thinking that she's be home before the end of the week - with her bottles going back to every other feeding, now I'm thinking it might be a few days more, but I'm thinking that she'll be home early next week. Once she can go 24 hours taking all of her feeding by bottle without any problems, they'll begin discharge testing and she'll be on her way out of there. She's doing really well and it seems she's very anxious to come home!

5 Weeks Down

So I guess I blogged a little too early yesterday. I blogged in the evening before I went back for my night time visit and when I walked in to the NICU I did my usual routine, 2 minute hand scrub before doing anything else. As I finished washing my hands a nurse, who I recognized but never actually spoke to because she was never the nurse for either of the girls, told me that one of the girls were moved - she confirmed with me that I was the mother of the Marcino twins and she said it again. So I started walking towards their usual spot with mixed emotions - thinking that Melia had been moved to a "side room" and that Madison was left behind in the main room. But sure enough, BOTH girls had been moved! Both Maddie and Lia were in a side room and this was a great surprise! Being in a side room means that the doctors are comfortable that the girls are completely stable. It's a much smaller and more quiet room - with no new admissions coming in because it's not a critical area - so it's much less chaotic and more calming. I was so excited! What a great step - first Melia is off of the nasal cannula and now they're moved into a side room. I gave Lia her bath and fed Maddie her bottle. I had a great visit with my girls. Yesterday was a great day. This morning, a couple more pleasant surprises were waiting for us when we went in for our morning visit. Melia was in a crib and Madison was off of her nasal cannula! WOW! These girls are moving fast! Looking at Melia, face nearly tube-less, with a full outfit on, in an open crib - with nothing separating her from me - no plastic walls or doors to open in order to touch her - it was such a fanstastic feeling. And then to look over at Maddie with her face now almost completely tube-free also - it was so awesome! Mike fed Melia and I attempted to feed Maddie, but she just wasn't into it. This was strange. She usually does really well with her bottles, but the nurse mentioned that she barely took any of her earlier feeding either. As I held her she continued to have multiple bradycardia episodes. This also surprised me because she always does so well with her breathing - she rarely has a significant brady or apnea episode anymore. But, the nurse chalked it up to her adjusting to being off of the nasal cannula and not having that additional pressure of air flow. This made total sense, so I agreed that this must be the problem. The nurse put her nasal cannula back on for a little while in order to give her a break and would take it off to have her adjust for the rest of the day.

When I came back for my evening visit, I saw her day nurse in the hall and she told me that Maddie had to go back on the nasal cannula for the majority of the day because she was having continual brady/apnea episodes. When I got into the room, Maddie had 2 more episodes within the first 10 minutes of my arrival. At the risk of sounding like a paranoid, crazy mother, I asked the nurse if I could speak with the neonatologist on for the night. A few minutes later the doctor came in and I explained to him how Maddie was just coming off of an infection and was having too many brady episodes for my liking and how constant brady episodes were the first indication of her being sick the last time she developed an infection. The doctor listened to me explain Maddie's history and my concerns for a few minutes and then pulled her chart and her previous xrays, etc. Then he did a quick exam on her and ordered bloodwork and an xray to see if there was anything going on. Sure enough, the xray showed that her stomach was inflammed again, this time with less actual inflammation than the last infection, but covering a larger area of the stomach. Her bloodwork showed that her CRP was up to 3.3 (higher than it was at the peak of the infection last time). The doctor explained to me that once again, it was hard to tell for sure if this infection is NEC because it seems to have been caught at an early enough stage that it's not showing all signs of typical NEC. However, all signs again point to the fact that this is more than likely a mild form of NEC. Other factors are also similar to the onset of the last infection as well - Madison recently had a blood transfusion and her feedings have been increased to 25mls with fortifier added to help boost her weight - not sure what this pattern means exactly, but there is definitely a pattern there and I really REALLY wish that Dr. Kamtorn didn't leave for vacation yesterday. Don't get me wrong, all of the neonatologists are very nice, very intelligent and very capable. I know that Madison is in good hands, but it's a familiarity thing I guess. So anyway, back to square one. Madison is back on antibiotics and IV fluids (and of course, she had her IV removed just this afternoon, so I got to listen to Madison scream and cry as the nurse tried to find a decent vein to put yet anothe IV in to - she's had so many IVs in for fluids or transfusions lately, that she doesn't have many veins left to work with right now - it took 2 nurses trying and several heart wrenching attempts in both arms and feet before they were able to find a workable vein - I won't go into the heartache that this caused me to listen to her cries during each attempt, but I'm happy that my friend Chris, who is a doctor at the hospital, was there visiting with me while it was happening because he was able to console me and be there for Maddie while I was feeding Melia). And of course she can't eat until further notice, that basically being for the 7-10 days that she'll need to be back on the antibiotics for. She'll have another xray and more bloodwork tomorrow morning and we'll see where we go from here. The doctor told me that he'll be keeping a close eye on her through the night and while he'll leave her in the side room and in her isolette for now, he couldn't say for sure that she wouldn't be moved back to the main room by the end of the night. Another loop-de-loop on the Maddie NICU Express.

While everything was going on with Madison I was trying my best to enjoy my time with Melia. I dressed her up in cute little pajama set and gave her a bottle. She took almost her whole bottle and didn't desaturate once. She's doing so well without her oxygen and I'm so proud of her! Towards the end of her feeding she gets tired and worn out - sometime I still try to push to get her to finish those last few mls, but tonight I didn't push her. She was tired, so I asked the nurse to give her the rest of the feeding by tube and I just help her and let her sleep.

Once again we had a great few days and a even better morning, followed by a terrible night. The roller coaster is still at a high speed. I'm still being torn in two, with my concern for Madison overshadowing my attempts to be happy about Melia's phenomenal progress. It's like a severe case of deja vu - I'm just reliving the same experiences over and over again. And everytime I think there's an end in sight, it starts all over again. My poor little girl just can't seem to catch a break and it's just so unfair.

Happy 34 weeks!

The girls are 34 weeks today and Melia has hit another milestone...as of early this morning she is off of the nasal cannula and officially breathing without any assistance! Walking in this morning and seeing her beautiful face with out any tape, and only her feeding tube in her mouth was such a pleasant surprise! See.... :-) The nasal cannula is kept on site by her in case she needs a boost during her feedings because she still does desaturate and forget to breathe at times while she's bottle feeding, but she's getting a lot better with that. She took her entire bottle last night on only 21% oxygen and didn't desaturate once. This morning, she was off of the nasal cannula and only had a problem at the very end with only 5mls of her 40ml feeding left to go - but for just about the entire feeding she was completely off of the oxygen without a problem, so this is a work in very fast progress. As of yesterday she is taking every other feeding by bottle, so this is up to 4 feedings per day by bottle. And also as of yesterday, they are weening her off of the isolette (meaning that they are making sure that she can maintain her body temperature outside of the isolette) and they expect her to be out of the isolette and in a crib within a few days! Dr. Kamtorn said yesterday that she's doing so well that the covering doctor might just send her home while Dr. Kamtorn is on vacation - so Melia could be home in less than 2 weeks! She's 4lbs 4.1oz now and moving fast!

Maddie is doing great too. Her one night nurse has been giving her almost all of her night feedings by bottle, even though the doctors orders only call for feedings by bottle 2x/day - and she has done great with this. Maddie really has the breathing and eating at the same time thing down pretty well and I think that she'll be off the nasal cannula not too far behind Lia. I think Dr. Kamtorn is only really leaving it on right now because Maddie has been sick and she wants to make sure that she is feeling 100% before she takes her off of the oxygen, but I know she can handle it and it will only be a matter of time. She's up to 20mls of milk every 3 hours and seems to be tolerating her food better each day. If she continues to do well with her food toleration, she'll be taken off of the lipids and electrolytes tomorrow so she can finally be IV free - hopefully for good this time! She's tipping the scales at 3lbs 6.7oz as of last night - a few more ounces and she'll be ready for a crib herself! (4lbs is the milestone that allows her to get into a crib) We've decided to start saving for the girls' college fund....here's our plan (check out the writing on Maddie's shirt)....I personally think that 50 cents for a picture with this beauty is a screamin' deal! Double Trouble will be home before we know it everyone!