Asher Update

Asher has made some improvements in the past day. Our pediatrician asked the neonatologist yesterday to take a look at him and see if there was anything she recommended. She noticed that Asher's increasing episodes started 6 days after his caffeine was discontinued, and caffeine takes up to 5 days to leave your system. The caffeine has been used since birth to stimulate their respiratory drive, but Asher's was discontinued a while back because "most" premies outgrow the need for it by 40-44 weeks and Asher was about 41.5 weeks at that point (Nolan's was discontinued a couple weeks before that with no issue; Asher was also tried then too but started having increased episodes right away so they restarted him quickly).

Well as with everything else, when has Asher done ANYTHING like "most" preemies? Never. That boy is on his own schedule. However, anytime he does something out of the ordinary it is concerning that his brain injury is playing a role. For the time being the caffeine seems to be helping things and I am trying not to get too worked up worrying what happens next time they discontinue him. Is this a long term problem because of his bleed, or is he just taking longer than most because that's how he works? The uncertainty of all of this doesn't get any easier to tolerate even though we've been at it for 4 months.  Anyway, hopefully within the next few days Asher can get back to normal and start using oxygen again only for feeds, but we'll see how it goes. As for Nolan, why he is still needing oxygen is unknown.

I'm done trying to figure those two out.

And we're back

To level 2 that is. Asher had numerous bradys yesterday so late last evening they made the trip back down the hall where they could be more closely monitored. Both boys are back on constant O2 and the reflux is getting increasingly worse. Asher can't lie flat on his back for even a minute or he is spitting up, and post-feed is horrible to watch him choke and sputter his reflux back down, in obviously a great deal of pain.

Insert tears and profanities here.

New pics

Nolan

Asher

Boys are doing ok but moving slowly. Nolan is back on a tiny bit of oxygen all the time now and both boys, after doing really well with one type of bottle for a week, are now having troubles feeding again so we are back to the drawing board trying to figure out what works best. Reflux is getting worse if anything and now pretty much all of their episodes are caused by reflux when eating. It's hard to see how much it bothers them, but on a positive they have pretty much stopped having spontaneous apneas unrelated to food. Currently, their pediatrician is considering other medication options and changing how they are laying in their beds. If those drugs and positioning changes don't work then it's just more waiting for them to grow out of this. Waiting. Waiting. Waiting. 

Our Brother From Another Mother

Today has been an emotional day. Asher and Nolan's little friend "E" is going home tomorrow. We have seen countless babies come and go during our stay, but none as special to us as him. E was born 10 days before our boys at a very similar gestation so we have been together from the start. We have ridden the rollercoaster together and have watched all three boys go through their ups and downs. Until very recently there were many similarities between the boys so they were like unofficial triplets. For the first several weeks the monitors literally never stopped ringing between the three of them. But suddenly in the past couple weeks E has really turned things around and is ready to go home.

Of course I am jealous, I think that goes without saying. But more so, I am absolutely thrilled for his parents. E's mom and I have forged a friendship throughout this ordeal and have proven to be great supports for each other. Many sessions of venting, swearing, crying, and most importantly laughing, have been shared. It has been amazing to have someone to go through this with because unless you're in it, you can't really understand how it feels. We have been seen each others' families go through our worst, scariest times, and we have also been witness to the best times. E's mom was there the first day I got to hold both boys at the same time and I think she was as excited as I was!

But envy and happiness for them aside, I am most struck with a feeling of loneliness. I am suddenly in a room full of parents I don't really know. And then there's their tiny little babies - half the size of ours, most of which are not even on monitors anymore, and most if not all will go home ahead of us. And I know that ours were earlier, and twins, and had a horribly rough start and BLAH BLAH FREAKIN BLAH. I know why they're still there but it's not making it any easier. With every day that they make improvements, I seem to get more tired and frustrated. To make matters even more emotional, both of our primary nurses go on holidays as of today and tomorrow for the next 2 and 3 weeks so I feel lost without them too! I know we have made it almost 4 months through endless scary setbacks, and this is just another low moment that will also pass. But seriously, when are we going to be done?! Can't someone just flip that magic switch that makes them ready to come home?

Anyway, enough wallowing, I know it doesn't help. The boys will come home when they're good and ready, they're clearly just not as ready as me. So farewell our sweet little buddy E and his mama and dad. We look forward to many playdates and happy memories in the future. When a friendship starts in the worst of situations like this one did, it's sure to last a lifetime.

Future Olympians

Hopefully before the Olympics are over we'll be able to unleash the boys from their monitors and take them to the NICU family room (with a tv) to spectate and hang out like a real family.

MUKMUK

SUMI

Passed!

Round two of Asher's hearing test. Phew. I knew in my right mind there wasn't an issue because he jumps at every noise, but it sure scared me first go around. Ears, and hopefully eyes (they're still being followed because their eyes haven't completely matured yet) appear to be in check. Another potential preemie problem crossed off the list.

Little chubbers are continuing to grow at a great pace. They will be 7 and 8 pounds even within the next one to two days!

Level 1

The boys have made some great progress as of late. First off, they were moved to level 1 a few days ago! Like the move to level 2, I was originally not thrilled, but at least this time I could be a bit more rational and realize that this is getting us closer to home. Literally, it's much closer to the elevator ;) I just wasn't that happy because it's yet another set of nurses we don't know, and the room itself...wow...dump. Seriously, it's a glorified supply closet. But, being that there's two of them the boys thankfully got their own little corner so we have the tiniest shred of privacy. If you're able to discount the fact that I'm actually sitting in the doorway when breast feeding, it's not that bad.

They are both now taking all feeds by bottle, and with very little oxygen. Things are starting to click! Now they need to get off the O2 all together and stop with the bradys/desats once and for all and we are going home! I am fairly confident at this point that barring any major setbacks they should be home in March. Should being the operative word because I am not counting on anything till they are physically within the confines of our home!

Of course with every up there's always downs with these guys and in fairly typical Asher fashion, it's him causing some worry. The boys had their newborn hearing screening the other day, and Asher did not pass. I have come to learn it is very common that babies don't pass their first screen but it is hard not to worry given the history with his bleed. I am sure I have seen him react to sound countless times, so we will keep our fingers crossed for better results next time.

Onward...

Bottles

Boys are doing well and advancing with their bottling which is very impressive considering what skill it takes to suck, swallow and breathe. Today Nolan is trying to take all feeds (8) by bottle for the first time, and Asher is attempting to take 7 of 8. They no longer have their indwelling feeding tubes and are so close to full oral feeds they can taste it (pardon the pun!).  Bottling is going better than breastfeeding, but each of them is making reasonably successful attempts so that's all we can ask for for now. Both boys continue to require oxygen only for feeds and are otherwise breathing room air with markedly less bradys and desats.

Weight gains are going well too. Nolan as of last night was 7 lbs 6 oz and Asher was 6 lbs 6oz. They have increased their total fluid intake and the fortifiers added to my milk in order to help speed up weight gain.

Lastly, they have made the inevitable transfer from neonatologist to pediatrician. Although at first I was sad to lose the security of the 4 neos on site, I know it is time to change to a sole caregiver and it is yet another sign that they are growing up and requiring less specialized care. So far so good and we are really happy with her.

I know we haven't updated many photos lately, so here are a few including the boys with their two primary nurses. Our family is very thankful that the boys have these two keeping a close eye on them.

Nolan: "Mother get that camera OUT of my face"

Asher, awake as usual

Nolan and Krista

Asher and Nicola

100 days

100 days have passed on our journey since the boys made their dramatic, early entry to the world. So many ups and downs that it is unbelievable to think of where we started, and where we've come. In the past 100 days here are some of the things we have experienced, in no particular order:

• Intubations, 3 each
• On CPAP, off CPAP, on CPAP, off CPAP (repeat infinitely); toss in a couple of BiPAP
• High flow prongs
• Low flow prongs
• IVs in hands, feet, heads, belly buttons; and a couple inserted from arm to heart
• Metabolic acidosis
• Blood transfusions, 3 or more each 
• Two brain hemorrhages
• A lung hemorrhage
• Lung infections
• One PDA open, closed, open, closed
• One PDA open, closed, open....not quite closed
• Apneas, bradycardias, desaturations - thousands
• Water retention and swelling; diuretics to help
• A hydrocele
• Gastric reflux
• TPN feeds and breast milk feeds
• Iron, sodium, vitamin D, multivitamins, milk fortifier, Ranitidine and caffeine
• Serious drugs - Morphine, Dopamine, Fentanyl, Indomethacin, Ibuprofen, Phenobarbitol
• Antibiotics - Ampicillin, Gentamycin, Vancomycin - repeatedly
• Bili lights for phototherapy
• Head ultrasounds, numerous
• Echocardiograms, numerous
• An abdominal ultrasound
• A barium swallow
• An EEG
• Chest X-Rays, numerous
• Heel pokes, hundreds
• A spinal tap
• Nasogastric feeding tubes
• Orogastric feeding tubes
• Vitals -  physically - twice a day; on the monitor - all day, every day
• Temperatures, 8 times a day
• Kangaroo care
• Resuscitations, numerous (more than we have told any of you about)
• A rainbow of skin colours - pink from being healthy, blue from not breathing, orange from bilirubin build up, grey from lack of hemoglobin
• Isolettes, cots, cribs
• 4 neonatologists, more nurses than we can count, two pediatricians, a neurologist, an opthamologist, a cardiologist, a dietician, a pharmacist, a social worker, a counsellor, an occupational therapist, several respiratory therapists, lab techs, x-ray techs, and ultrasound techs all poking, prodding, and observing - many at the same time
• Emotions - EVERY (often all at the same time)

These have been the longest 100 days Jordan and I have ever been through, with the end still unfortunately not clearly in sight. But despite all the difficulties, we have been blessed with the opportunity to cherish all the little moments that parents of healthy babies take for granted. Hearing crying and seeing a quivering lip - amazing. Being puked or peed on - an honour. Eye contact and knowing you're finally being seen - indescribable joy. All that being said, we're exhausted beyond belief and most days I don't know how we're going to keep going. Boys, I know you do things on your own schedule and not when anyone tells you you "should", but please, we're ready - really, really ready - to have you home.

Here's hoping we're not celebrating 150 days in the NICU. If so, I may be writing that post from my padded cell.

Names Explained

We have gotten a lot of compliments on the boys' names (thank-you!) and questions about the meanings, why two middles names, etc, so I decided to shed some light on why and how we decided to name the boys what they are named.

Asher - Means blessed. Obviously! Could it be more fitting?! I have liked Ash for a long time. It came and went off the list many times and eventually we decided on Asher because giving him Ash as his "real" name didn't seem official enough for me. That being said, now that he is Asher, he is Asher to stay. I'm sure Ash will happen one day, but not right now. Additionally, since Asher was baby A, it seemed too perfect not to.

Timothy - Jordan's Grandad. Back since Rio, Timothy has been our first choice for a boy's middle name to honour Grandad. Because in utero I decided that Asher was "Jordan's baby" and Nolan was "Tracey's baby" (based on their movements - Asher was active and Nolan was lazy!), it made sense that little Jordan was named after Jordan's side.

Cohen - Cohen is the baby we lost. We debated giving Cohen as a middle name, and finally decided against it when we decided to go the great grandfather route. However, when I went into labour and found out Dr. Cohen was the OB who would deliver (and ended up delivering incredibly safely for all three of us) I took it as a sign our guardian angel was with us for their birth. Asher, being first born, got the honour.

Nolan - Means Noble. Nolan was the last name added to our list of boys names, not long before they were born. We decided on Asher first and then decided that Nolan sounded and looked good with Rio and Asher, so by process of elimination, it won out.

Giovanni - My dad's dad, my nono, naming both boys after their respective paternal and maternal great grandfathers. It also honours their italian heritage.

Luke - Early on, Lukas was a name we were considering. We ran the names by Rio and she immediately started calling the boys Tukie and Lukie. Baby A was always Tukie, and Baby B was always Lukie, and she never ever confused them. We had discussed how it would be nice to give the boys middle names based on Tukie and Lukie, but gave up quickly realizing Tukie had no hope of a similar "real" name. When the decision was made to name Asher for Cohen, it became a no brainer to name Nolan for Rio, and therefore out of Lukie, Luke was born.

Well now that I'm on a roll, I may as well give some explanation to Rio, since there have been a few misconceptions about her name too...

Rio - no, she was not conceived in South America (hello - do the math! She was born 1.5 years after our honeymoon!) and no, she is not named after Rio de Janeiro (we didn't even go to Brazil!). Just a name we liked. Initially suggested by Jordan as a boy's name, which I shot down quickly then reconsidered for a girl. I will admit, although having no ties to South America, we did appreciate that it is a beautiful spanish name meaning River.

Elisabeth - My mom was Ann Elizabeth; my dad's mom (wife of the above mentioned Giovanni) was Elisabetta. Elizabeth + Elisabetta = Elisabeth. Very fitting, I see Rio Elisabeth's Grandma Betty in her every day.

There you have it. Now you know. Assuming you actually cared of course ;)

D Day

Well the big day is here. My due date. I have been anticipating this day to be sad and disappointing - not because at any point did we expect a twin pregnancy to make it this far, but because when this whole ordeal started we hoped to have them home around now and clearly, they're not. That being said, today is not so bad. It's just another day, a hard one, but not like any of them are particularly easy, so I'm faring pretty well. Although things have not played out like we would have hoped, I feel blessed to have two beautiful babies that are growing strong every day, and while they're not home yet, they're working very, very hard to get here. Here is a reminder of how incredibly far we've come....

Nolan - day 1

Chubs - 40 weeks

Asher - day 1

Bottle master - 40 weeks

This journey is a long, hard one, and not something that I would wish on anyone. But we're on it, and we're all the stronger for it. The Trousdell Five is a team not to be reckoned with!

Mr. Personality

In the past weeks, the boys' unique personalities are starting to become more apparent. Essentially, Nolan is the grouchy one, and Asher is the social one. When I look back at the few photos I have taken lately, they are all of Asher, because Asher is the animated one who makes me run for my camera. When he is awake, he is A-WAKE! He looks around, eyes a-googling, and can stay that way for long periods of time. He likes to be held in the crook of your elbow and I'm sure it's because he doesn't want to miss anything when he's propped up on your shoulder.  Even back to the very early level 3 days, Asher is the one in the photos with the wide eyed stare out from under his CPAP.

Nolan on the other hand eats and sleeps. Literally, that's it. The only time you hear anything out of him is right before his feed when he wakes up to get mad at you because his food is not coming quickly enough. When he does open his eye, it's usually one, and it's out from under a massive furrowed brow (thanks Jordan, for passing that on to all three of our kids). I have decided he is our big boy because he does not waste a single calorie by doing anything but sleeping and growing. He does enjoy a good cuddle though, and likes to snuggle right into your shoulder, attempting to give you a hickey when he's hungry.

It's funny because when I think back to them in utero, Asher was the mover and shaker and Nolan was the "lazy" one who I felt much less frequently. Based on their movements, I could have predicted these personality traits. It's funny to think we were so worried about how we were going to tell our identical twins apart - little did we know that their size and personalities would be so different this early on. No need for A and N forehead tattoos - I think they've done their own good job of identifying that they are each their own man.

So that leads me to the latest pic, of course of Asher. Here is how his nurse found him today, lounging ever so comfortably in this horizontal position. Please note he started completely vertical, upright between the two white rolls. What a dreamboat he is. Good thing they look exactly the same so I can ooh and ahh about how cute one of them is (ever changing)!

In a quick update, both boys are doing well on the breathing. Asher so well in fact, that they've decided once again he doesn't need CPAP. Each of them spent the whole day today without any prongs except for during oral feeds where they are working harder and therefore need a tiny bit of help. Some other small changes with drugs and milk fortifiers, but otherwise status quo. Nolan should surpass 7 lbs and Asher 6 lbs within the next couple days.

Happy 3 month birthday my big strong boys!