Out with the old and in with the new...

...year and home!

In a turn of events only befitting a new years blue moon, the boys were unexpectedly moved to Level 2 today! Sadly, 4 critical babies were born between 4 and 9 this morning, so to make room for them it was determined that our boys could be moved to level 2. I was filled with mixed emotion, knowing that this "should" be a good thing, but I was concerned with the level of care they were going to receive and whether or not they were actually ready. But being reassured by the nurses and Jordan that they wouldn't have moved if it wasn't time, I am growing more accustomed to it. Selfishly, I was getting very used to our routine up there and getting to know the nurses and how I best fit in so it was a real shock to know that suddenly things would be different and overwhelming again. Now that it has sunk in and they are in their new corner of the room, I realize that this really is an exciting day and they are getting one step closer to homecoming.

Happy New Year to all of you from the Trousdell Five! 2010 is going to be our year!

At Last

It took 59 days but finally the boys have been reunited. Words cannot describe...

Spoke Too Soon

Six low heart rate episodes in 11 hours and Asher's trusty CPAP mask is back.

*Sigh*

We'll see what happens again in a couple days when he's well rested.

Nolan, the little chunker, has surpassed 4 lbs.

Nighty night.

Another Festivus Miracle

Asher is amazing.

When we went up this morning, we were greeted by this. Notice anything missing?

CPAP! There was our little man lying there with only nasal prongs helping him breathe. Not even supplemented by oxygen - room air only! It all started last night when Jordan went up and helped give him a sponge bath and he successfully had his CPAP mask off for 10 minutes. Cuteness ensued as shown below:

I guess because he had been doing so well without his mask they decided that they could try him out with prongs and see what happened. So far so good! While there is a reasonable chance he might have to go back on CPAP if he gets tired, it is a very tiny step backward and nothing compared to being reintubated. Can I remind everyone that it was only 10 short days ago when he was put back on the ventilator and they were querying seizures and various other serious problems. And only 4 days ago when they decided to "take a chance" and extubate him and put him back on CPAP. This boy is a living, BREATHING miracle!

Not to leave Nolan out, as he is still stable and doing well and a mere 4 grams away from 4 lbs. Having a few too many desats to try him on prongs yet, but we're hoping for the next couple days. He and Jordan had their first kangaroo session today while I sat back and stared in amazement at my 3 beautiful boys (also dumping coffee all over Asher's isolette, but that's another story).

Happy 8 week birthday boys! You have done your parents and your medical staff VERY proud. Next step level 2, and it might be Asher beating Nolan there!

Christmas

Happy Christmas and much love to all of you from the five of us!

Asher (top) Nolan (bottom) care of the nurses. When we got there today those stockings were stuffed with presents for them.

Big sister very patiently spent part of her day visiting and opening presents for her bros.

CPAP Update

In a surprising turn of events, the doctor decided that yesterday Asher might be up for a try on CPAP. I held my breath and sat with him most of the day and things were looking great. We went up again last night...still great. This morning....even better. His gasses were better than they have been in a long time and his oxygen saturation was as high as possible without any additional support. In lay man's terms - he's delivering on my Christmas wishes and we can't ask for more than that.

Nolan is still fantastic. There is now serious talk of trying to get him off CPAP and on to nasal prongs within the next few days. They don't want to push him too hard as they would like him to succeed first try, rather than try to soon and have him regress, and I stand behind that approach 100%. I am fine with things taking a bit longer, I am just done with the setbacks. They are going to start removing his mask a few times a day and see how he reacts. They are also going to closely watch his weight gain and make sure he doesn't burn too many calories trying to breathe on his own.

So all is as well as can be expected in Trousdell-land this Christmas Eve. Fingers and toes crossed that they remain quiet and stable throughout the next few days so we can enjoy the season. As a nurse said to me today, this Christmas is not ideal but it is still their first Christmas and they are definitely a gift. Indeed, they are.

Merry Christmas!

A Christmas List

Dear Asher and Nolan,

Things are shaping up around here for Christmas and I'm guessing you haven't had a chance to sneak away and do your shopping. Well we'll forgive you for no presents but don't think you're getting off the hook that easily. I have a list of non-present-type requests that I'm hoping you can both deliver on.

Asher:

1. Keep growing stronger and get yourself off that ventilator, preferably by the end of 2009. You're looking better and more like yourself and you're starting to breathe above your set rate. If your gasses are good tomorrow they may think about slowly starting to wean you off the vent. So be good when they do your heel poke and let's have some low CO2. I am encouraging healthy competition here by pointing out that your brother is kind of kicking your ass in the breathing department right now. That's not cool is it? So get on it.

2. Keep gaining weight. Not the huge gains you've had the past couple days so that they're worried you might just be retaining water, but a reasonable amount, say 30 grams per day. Weighing 4 lbs by the end of 2009 is definitely a possibility if you keep up the good work.

Nolan:

1. Continue to be a champ on CPAP. I heard a couple of rumours today. One, if your CO2 starts decreasing you may be a candidate for nasal prongs before you know it. Two, when you get on nasal prongs you might be able to leave level 3 and move to level 2. Can we aim for this early January please?

2. Gain 50 grams before Christmas to double your birth weight. Can you believe it?! Double your birth weight at a whopping 3 lbs 14 oz. If you want to take it one step better, gain 110 grams between now and then to make it to 4 lbs.

Both Of You:

1. No more middle of the night phonecalls. You've each given us one and scared the living bejeezus out of us so you're done.

2. Quit the desats and bradys. QUIT THEM.

3. No more infections, bleeds, or drama in general. You've aged me incredibly. Plus I'm really tired of seeing IVs. Nolan, your haircut is ridiculous care of the 2 IV sites in your head. And Asher, once your current site goes you're out of hands so if they can't find good veins in your feet you're about to get your own bad haircut.

4. Discharge by the end of February. I've pretty much given up the dream of having you out by your due date but there's still 24 more days in February past that, so I'll give you till then. If you also manage to come home at the same time that would be helpful. It will be sad and hard if one of you is left behind (Asher I'm talking to you. Do you want to be there when your brother is home hanging with Rio? I didn't think so).

I think I'll stop there. That's a pretty hefty list but I'm going to go out on a limb and say YOU OWE ME. I'm not getting ahead of myself and asking for anything unattainable or too far in the future so I have confidence you can follow through. And if you don't, I might have to make sure Santa loses the address of the NICU and can't deliver your presents.

Finally to quote Mariah Carey (ugh, I know I know, almost as bad as Celine) singing my favourite modern Christmas song (care of Love Actually, the best Christmas movie EVER):

I don't want a lot for Christmas

There is just one thing I need

I don't care about the presents

Underneath the Christmas Tree

I just want you for my own

More than you will ever know

Make my wish come true

All I want for Christmas is you

Lots of love, oh and Merry Christmas!

Mommy

xoxoxo

Another Bullet Dodged

These boys really know how to put us on a rollercoaster ride. Now that Nolan is cruising along stable as can be, Asher has had us worried sick the past couple days. After the head ultrasound two days ago we were relieved there we no signs of hydrocephalus; however his bradys and desats continued to increase. Yesterday I sat holding Nolan watching Asher's heart rate dip well below where it should have been for a long time. My heart rate did the opposite obviously, which couldn't have been good for poor Nolan.

So fast forward to 2:00 this morning and we get yet another dreaded phone call. It was the neonatologist saying Asher's desats had been getting worse and worse and they had to resuscitate him several times so they decided to reintubate him. Back on the bloody vent, I thought we were past this. Talk about a giant leap backwards. There was only so much chit chat at 2am but he did tell me that Asher had some strange behavior that "may" have been a seizure. A seizure? Dear God tell me this isn't happening.

This morning we went up to the hospital and got all the details. First off, the doctor had done endless bloodwork that so far had shown no infection but he had put him on antibiotics just to be safe. He also did a spinal tap that we later found out was normal and the fluid looked clear (no blood) giving yet another confirmation that the brain bleed is absorbing as it should. So that basically ruled out all signs of infection.

As for the potential seizure, apparently during intubation Asher got incredibly tense to the point that although the tube was down, they couldn't ventilate him. Eventually he came out of it and behaved normally. This did however cause enough alarm in the doctor to involve the pediatric neurologist and schedule an EEG.

The EEG happened mid afternoon and I watched with bated breath as all his brain activity was displayed on screen. Of course I didn't know what any of it meant, but it instilled serious panic. I then sat and stared at Asher for the remainder of the day, analyzing his every move. The moves were in fact very infrequent, which caused more stress. The reasonable explanation was that he had an incredibly hectic night that also included a sedative, but I couldn't help but be disturbed at seeing him so listless.

So at the end of a verrrrrry looooonng and stressssful day we were heading out the door of the NICU when the neurologist just happened to walk in. Good news alert! She had read the EEG and there were no signs of seizure activities and she didn't have any reason to believe that what happened last night was a seizure either. Hallelujah! We also had a very brief chat about Asher's bleed and the future implications of it and she made us feel a lot more positive than we previously had. We left feeling like no matter what damage the bleed caused, the outcome can be helped along with a whole lot of therapy and intervention. If anyone is going to give Asher the best chance to walk away from this (literally!) it's me and Jord.

So now we're back to asking ourselves what the heck happened?? Once again no one really knows why Asher has regressed, but now we just have to hope that he can quickly get strong enough to get off the vent and back on CPAP. The doctor did explain to us that Asher is still within reasonable gestational age (33 weeks today!) to be suffering "apneas of prematurity". Meaning, this entire incident could have just been happening because he's still premature. All we ever hear from the doctors and nurses when they don't know what's going on is an exasperated "BOYS!!!". Seriously, apparently preemie boys cause way more problems than their female counterparts. Lucky us, but really did you ever question who's the stronger sex? Girl power starts at birth, clearly.

Anyway, I leave you with our little trooper and the thousand leads he had attached to him for his EEG. They assured me it didn't hurt him, but it sure hurt his mom. Good thing we have their strength to draw on because without those little angel faces I could not have gotten through this day. Here's to better days ahead. Stat.

Waiting sucks

Today was a stressful day. We knew we'd have one again soon enough, but since the boys have been doing so well it seemed almost harder to take than when everything was going wrong every day. It's nice to get used to good news so bad-ish news really sucks more than ever these days.

First off, the more stable boy these days is Nolan. Ever since the move to CPAP the boy has been a champion. They changed his setting on CPAP to BiPAP the day after he was extubated, which means that although there is no tube down his throat they can still control the number of breaths he takes as opposed to CPAP where he has to control it all himself. So although BiPAP is not quite as big a step forward as CPAP, he is faring incredibly well. Silent and calm. Two very good things for these little guys.

Then there's Asher, who previously had been our stable guy for the past couple weeks. Maybe Nolan was getting too much attention, but suddenly over the past couple days Asher decided to significantly increase the number of desats and bradys he was having. They altered his feeds as he seemed to be getting more agitated, but that provided no relief. They decided today to also change him to BiPAP and unfortunately in his case, Jordan and I saw this as a fairly big step back. He had been doing so well on CPAP and suddenly he wasn't. What was more frightening is that they couldn't come up with any explanation for it so they decided to send him for a head ultrasound to rule out hydrocephalus from the bleed as a cause of his new issues.

The ultrasound was at 12:30 and we were promised results immediately. 6:30 pm and still no results and we were panicked. I spent the entire day working myself up to worst case scenario. After numerous phonecalls between us, the nurse, and the neonatologist at home, the doctor finally called radiology demanding they play the dictaphone report of the results into the phone for her because she still hadn't received the official report. So we have answers. Phew. Good answers. No signs of hydrocephalus at this point, meaning we're still thankfully avoiding the need for a shunt, and his brain looks unchanged. And apparently since changing his CPAP to BiPAP he has had a great day with no bradys and far less desats, so a whole lot of worry by everyone was for not. Thank goodness our house is full of chocolate, that's all that got me through this day!

In other Asher news however, we found out he has an inguinal hernia. Yes, that kind of hernia. I was warned by the nurse that I might be scared next time I change his diaper and that it is going to continue to get larger. Awww, poor little guy. But the good news is that he will have surgery before he's discharged and it sounds pretty low key, as far as surgeries go.

In positive news for both of them, they have passed their first eye exam with flying colours. Basically, their retinas show absolutely no sign of disease (stage 0) and are part way through normal development (zone 2). The doctor told us that when their retinas are fully developed (zone 3) and they are at stage 2 or less (let's hope to remain at stage 0!) we are looking at minimal if any retina issues. Again, phew. I think it's probably safe to say at this point that neither of them are going to be blind, so any eye issues that come of this, I can deal with. I KNEW they were looking at their mama fondly ;) Ok they're not. They can't see me. I know that, but it's nice to pretend.

I think that's about it. Both boys are 3 lbs 4 oz as of last night. Every day we see them, they look huge to me. I can't imagine what a full term baby looks like because suddenly these guys are the new normal to me and look healthy and chubby even! Here's some new pics, feel free to oooh and ahhh at how cute they are. Both love being on their tummies and thankfully, care of the monitors, there's no risk of tummy time.

Asher - his diaper almost looks like it fits him!

Nolan - umm ok, no, clearly the diaper is still a bit big :)

The setup

Hi again. Just decided to post a quick pic of the setup in the NICU because I'm sure it's kind of hard to envision.

Asher is in the far bed under the green blanket and Nolan is in the near bed. There are 6 beds in level 3, so 4 more isolettes line up in a row next to the boys. We are at the far end of the room from the door so we have slightly more privacy than if we were right at the doorway where Asher originally was. Their monitors are the screens above the foot of the bed and the CPAP machines are at the head of the bed (the blue machine you can see by Nolan). IVs and their food also hang near there. In the reception area of the NICU there is a large scrub sink where you scrub in before you enter, then there are sinks and endless antibacterial wash for frequent handwashing while you're there.

The chair parked next to Asher is where someone is usually sitting - either Jordan or myself, one of their nurses or the respiratory therapist. There is a lot of sitting and watching...both the boys and the monitors. They do try to make it as comfortable for the parents as possible, in that we have a drawer for each of them where we can keep personal stuff, they give me all the pump supplies, bottles and labels I need for milk, and they bring out rockers, screens and pillows to make it as comfortable and private as we need it to be when doing kangaroo care.

You can see how close together the beds are and although there are other babies equally close to them we don't really know what's going on with them. Out of respect for each other, no one looks at (at least not obviously) or asks about the other babies. If a baby is in level 3 they are very sick, so for privacy's sake everyone keeps to themselves.

Anyway, hopefully before too long the boys will move to level 2 (when the breathing is more stable) and then they can co-bed in a crib and we will have a lot more freedom to interact with them and get to know the other parents better. Baby steps and we'll be there!

A Deep Breath

I knew that I should hold off on reporting on Nolan's struggles of late, because we have learned that not only can things turn badly in an instant, things can also turn around for the better just as quickly, and Nolan has proven that to us in the past couple days.

Poor Nolan has really been struggling with his lungs as you know. The bleed, the infections and just not really seeming to cope with breathing in general. We were starting to fear the ventilator had no end in sight. The other day when the infection finally cleared up they tried weaning his rate on the ventilator (lowering the number of breaths the machine gives him) with no success. I had a big talk with the doctor and he said they didn't want to push him and clearly he just wasn't ready to be extubated. That was hard to hear as we were really hoping he could be taken off sooner than later. Well what a difference one day makes! The next morning the very same doctor watched Nolan closely during rounds and noticed that when he was having all his episodes of "chest freezing" (holding his breath and dropping his heart rate, respirations and saturations) he seemed to be really fighting the tube. After discussion with the nurses and the respiratory therapist the doctor decided that maybe it was the tube itself that Nolan didn't like and that if they tried to extubate him he might do better.

Lo and behold, at 1pm yesterday out comes the tube and onto the CPAP and Nolan behaves like a star! I was with him most of the afternoon and could not believe the change in him. He was calm, he was happy, and the monitors barely rang. I didn't want to get my hopes up too high because the past 2 times they have tried to extubate him he got tired within 12 hours and went back on the vent, but things were looking up. We called throughout the evening and things remained stable. We slept with the phone by the bed just in case there was another frantic call from the doctor but were pleased to wake up this morning knowing he'd performed well through the night.

When I got up there today he was asleep as calmly and quietly as I'd ever seen him. His blood gasses this morning showed that he was tolerating CPAP as well as he'd been tolerating the ventilator. Finally, mom and dad breathe a big sigh of relief. I think we're there. These boys of ours really have minds of their own. First Asher just pulling the tube out himself, then Nolan deciding that if he fights hard enough someone will notice that his tube has outstayed its welcome. I am a very proud mom of two very strong willed little boys.

In other positive news, the boys have been assigned a core nurse, meaning that every set she works she will be with the boys and will follow them through until discharge. Finally, the continuity we have been longing for. I feel like today we have taken a really positive turn. Of course there will continue to be setbacks, but maybe now we will be able to take a few steps forward before we take any backwards.

On a side note, today is one year since we had our loss. It has been hard to anticipate this day but obviously we have a lot on our minds so it is overshadowed by the boys. I can't help but think though that maybe Nolan's success today is not just a coincidence and that he had some help from his guardian angel. I do try to find peace in the fact that she is watching out for all of us and that is making this day easier to get through.

Here are some new pics of the boys, now both adorned with the handsome and stylish CPAP get up.

Asher with my hand for perspective of size

Peaceful Nolan

A "Big" Day

The day is BIG because Mr. Nolan has hit the incredibly exciting milestone of 3 lbs! That's about the only positive thing Nolan has going for him right now but we'll leave the negativity out of this today as things will hopefully improve for him soon. Asher is very close to 3 lbs and should reach it in the next day or two. It's a bitter sweet day for me reaching 32 weeks, as this "should" have been the day I was allowed to get up out of bed as the boys would have reached a good enough gestational milestone to be born without issue. But regardless, they're here so happy 32 weeks boys, keep up the good work!

Stand by Me

I feel compelled to share this video as it blew my mind. http://vimeo.com/moogaloop.swf?clip_id=2539741. Check it out (you need sound). This goes out to all of you who are standing by us right now. We literally could not do it without you. To all the special peeps who are still emailing, calling, dropping off treats or meals, watching Rio, or simply sending us your love - we have truly been shown who the keepers are and we love you for it.

For all of you who comment on our strength, I appreciate it, but we aren't doing anything that any of you wouldn't do in our shoes. We are getting by for our kids, period. If I could cry all day and not function, I would, but that is not an option for the boys or for Rio. I am optimistic because I have to be - any other outcome but the best outcome is unfathomable and I could not deal with the challenges of the present if I spent my time worrying about the future. Each hour is hard enough to get through without worrying about 6 months, or even 6 days, down the road.

So we've said it before but will say it again, repeatedly - thanks again for everything. Someday when this journey is just a memory we will NOT forget all of you.

xo

5 weeks

The boys have been all over the place the past few days but were a lot more stable again this morning so we had a good visit.

Asher had been having a lot of desats and low hemoglobin so they gave him another blood transfusion yesterday which has seemed to help. He also has some reflux issues so they discontinued his milk fortifier for a day to give his belly a rest and are now slowly increasing it again as he tolerates it. The other day he was so miserable that I had to put him back 20 minutes into a kangaroo care session but today he did very well. I am still getting over food poisoning (nice date night!) and Jordan hadn't had a turn yet so I conceded and let dad do kangaroo care. Asher was a star and Jordan was thrilled.

Nolan has recovered from the bleeding in his lungs but has now developed yet another lung infection which could explain why he had gone several days with basically no tolerance to being handled. I couldn't even put my hands in on him because every time he was touched his oxygen and heart rate dropped. But now that the infection is being treated with antibiotics he is behaving much more like himself and I got to give him some good squeezes today without any consequence. Once they see that he is over this infection they will try again to challenge him on the ventilator, hoping to get him on CPAP sooner than later.

5 weeks down, still fighting and amazing us with their strength and resilience!

Same old

Not a lot new here but it's been a few days so thought I should spare you all from worry and give you an update.

Both boys are somewhat stable on their respective breathing apparatus. Still plenty of ABDs but that's not new. Nolan's bleeding from his lungs has thankfully finally stopped so they will very slowly try again to wean him from the ventilator. Asher is doing really well on CPAP so I have been able to hold him nearly every day.

Both boys seem to be losing weight as quickly as they are gaining so the doctors are carefully monitoring it. If they don't start improving they will add additional fat to their milk (currently they already add fortifiers) and hope that helps but for now they'll just continue to watch the trend.

Other than that, they'll both get eye exams in the next couple weeks with a pediatric opthamologist. They get the exam whenever he's in the hospital for surgeries so we don't know when that will be, other than next time he's around. I'm slightly nervous because eye problems are a very real possibility with micro preemies, but we'll just have to wait and see.

Visit length and frequency has been increasing, especially with Asher's willingness to be handled. We may have to start taking more people up on offers to take Rio as it's not exactly relaxing when she's running around bumping into things and knocking stuff over. She loves her brothers though so we take her up as much as we can tolerate the stress. On that note, I'll leave you with a couple cute shots of her "snuggling" the boys for the first time.

Asher

Nolan showing off