3 kg!

Nolan has officially cracked 3 kg! That translates to 6 lbs 10 oz and exactly one pound heavier than his tiny, older brother, who between setbacks and diuretics to help with fluid retention, is having a bit harder time packing on the pounds.

Apparently CPAP at night was the help Asher needed. He had 3 nights of 8 hr stints of CPAP and tonight they are cutting that back to 6 hrs to see how he does. He is a new man - alert, happy, taking 2 bottles a day with ease - so hopefully this was the assistance he needed.

Nolan, besides being large and in charge, is up to 4-5 oral feeds per day and doing great. Nolan likes to attempt breastfeeding, but Asher really has no interest so far so we'll keep at it for both of them. The sooner the pump can be retired, the better, although it has become painfully apparent to me that that likely won't happen for months after they're home. Ugh.

Lastly, in a HUGE turn of events, neither of them had an apnea or brady for an entire shift yesterday. This is completely unheard of, and shows that things are finally starting to come together. At last. Once again, we're being lulled into a false sense of security, but for now we'll take it!

Asher, content after a bottle. Starting to look a lot like big sister did at birth.

A new plan

Jordan and I are returned from our night away at Point No Point, better rested, happier, and ever so slightly less stressed (we'll see how long it lasts). Asher didn't have the greatest night while we were gone, but thankfully the real shenanigans never started until after we called so it all worked out that our nurse didn't need to lie to us or phone us with bad news (thanks Krista!). After bloodwork and a chest x-ray Asher didn't look any worse for wear, thank goodness, but yet again no concrete explanation for his bad behaviour. A couple possibilities are that the high flow prongs he is on are shooting water up his nose and making him congested and rightfully angry, and/or that the way he is propped up to help with his reflux is causing him to slump down and not be in the best position to breathe. Either way, today's doctor thinks it is likely something mechanical so hopefully we can work it out. I am feeling a lot better that it seems like there is a plan to get his breathing sorted.

So first things first, get rid of the high flow and the shooting water. I didn't feel comfortable taking him right off and back on to low flow, so the doctors and the respiratory therapist (taking into consideration mom and dad's concerns) decided that the best plan would be to put him on CPAP for 8 hours at night, weaning him slowly night by night, using low flow prongs during the day. The CPAP will help with inflating his tiny lungs so that when he isn't on it he will have an easier time with his air exchange. Next step is to change his sleeping position and put him in some sort of sling so that he stays elevated for his reflux, but less likely to slump himself in half.

As for his groin problems, I won't go into great detail because one day 15 year old Asher will hate me for sharing. I will just say that an ultrasound and consult with a surgeon have determined that he should sort himself out in the next 6 months. That being said, he intermittently requires a diuretic to help with the water retention because boy, can it look scary down there.

His 5 day trial of reflux meds will end Friday so they will stop them and see how he does. Basically if he starts throwing up his feeds again they'll know it works, and if he doesn't, they'll know it wasn't really the problem. 

He seemed a lot more like himself today, back to being vigorous. Since his whole ordeal last week we haven't pushed much on the feeds, but today after bath (when they're usually too exhausted after their swim) he happily took a bottle with no effort. It was a proud moment, so hopefully he can start getting back on track and catching up to brother.

Nolan is a star in the eating and getting fat department. He is up to 4 oral feeds per day now. Today he breastfed for nearly half his feed, then he was topped up with a bottle. This is a first, as they are normally too tired to be bottled after nursing, so they are tube fed the remainder. Again, a very proud moment!

Other than that, Nolan is same old same old. The only change for him is that they stopped the caffeine he has been getting from birth, to help respiratory drive. Because he has been doing so well it will be pretty obvious if he starts misbehaving in the 3-5 days after it's out of his system, so they'll just restart him. But I am hoping he's now old enough to do without.

Anyway, no new pics lately, sorry about that, so here's a few more from our photo shoot a while back. Oh and let's not forget the best big sister around.

Asher

Nolan

"Sparkles" - her puppy name

When all else fails, they're fat

As of tonight, the light heavyweights are tipping the scales at:

Asher = 5lbs 8oz
Nolan = 6lbs 2oz

Asher has now been moved back into a crib, without brother, in order to prop his head up higher and deal with his "supposed" reflux.  He has also been started on Ranitidine (Zantac) for a 5 day trial, so we'll see if that helps. I personally think it's less about reflux and more about plain old exhausted lungs that have been pushed too hard, but unfortunately mom doesn't make the decisions even when she think she knows best. Sigh. We'll see if the reflux meds are the magic cure.

Frustrated mom, signing off to pump and zzzzzzzz.

PS - When I got off the phone with our nurse this morning Rio asked me if Nolan had had any bradys. Ummm, pardon?! When I asked her what a brady was she said "When their heart beats too slow. It needs to beat FAST to make them big and strong". I melted. No three year old should be able to define bradycardia and how it affects her tiny brothers. On the other hand, just another proof of her brilliance ;)

More improvements

Asher had another stable night so this morning they put him on high flow prongs (receiving 2L of pressure as opposed to 9L of CPAP or 20 mL of low flow). They also restarted his feeds, discontinued his antibiotics, and moved him back to level 2. Each brother will stay in their own cot for a few days until they're sure Asher is stable, but at least we have them back in the same room together so spending time with them is a bit easier on us. A much better day so hopefully if things continue like this, not as large of a setback as we had originally thought.

Nolan is still doing well, growing like a weed and not fitting in most preemie clothes now. I was able to give him a full bottle for the first time today so that really helped my confidence. Bottle feeding a preemie is nothing like feeding a full term baby, as you have to help them control themselves and pace so the don't choke or forget to breathe.

All in all, we're hoping we're back on the upswing, so Asher needs to know that we're counting on him to behave! Positive thoughts continue so hopefully he gets the message!

Improvements

Asher started to improve late last night, and thankfully did not need to be reintubated. (We're DONE with middle of the night phonecalls, remember boys?!).  This morning his blood gasses were improved, so they changed the settings from BiPAP back to regular CPAP, and having spent all day with him, he still seemed to be doing well as of about 4pm. In trying to rule out everything, they sent him for a barium swallow today (drink chalk like substance then have an x-ray) to rule out severe reflux. Nothing overly alarming showed up, but that doesn't necessarily mean it's not the problem. So now in true Trousdell twin fashion, the doctors are shaking their heads, not really knowing what is up. If he continues to be stable throughout the night, they will consider switching him to high flow prongs tomorrow and restarting his feed. So here's hoping for another quiet night.

Since the boys thankfully never seem to have bad days at the same time, Nolan made yesterday's hideously exhausting and emotional day somewhat tolerable when he avidly breast fed for the first time last night! He took 11mls (they test weigh them before and after) which is apparently a very impressive first showing. What a guy!

Mom and dad are feeling much better today, so thanks for your concern. Yesterday I felt as scared and overwhelmed as I ever did at the very beginning but today I am having an easier time putting things in perspective. While this is an ill timed and unexpected setback, we are hoping it is "just" another setback that Asher will once again recover from. Did you hear that Asher? Recover quickly. It's time to come home.

Just when things are good, they get bad

Asher took a very bad turn today. He started having increased bradys this morning so he was put back on CPAP. He was not responding well, so they changed the setting to BiPAP (a set rate, similar to the ventilator but without a tube down his throat) and moved him to level 3.  He is fairly stable and so far has not needed to be intubated, but we'll see. They really have no idea what's going on because his chest x-ray looks terrible (alveoli are all collapsed) but he doesn't show signs of infection. He is on antibiotics until they can rule out he doesn't need them, and they have stopped his feed and put him on an IV.

Needless to say, I am not coping. Nolan is alone in level 2, moved to a small cot with all signs of Asher removed. I'm not sure why they moved Nolan out of their crib when there is another singleton in level 2 in one, but I am trying not to get overly upset about that at the moment because I have enough to worry about.

We really thought that this good spell we have been on was the beginning of the end of our NICU journey, but apparently another setback was in order. I have begun mentally preparing myself that they very well may not be home by the end of February, and when they are discharged there will likely be readmissions to the pediatric ICU over the course of the next two years until they become stronger.

Not a good day. We'll keep you posted.

Confirmation. Phew.

It has been confirmed, I did not imagine the conversation about Asher's bleed. It is in fact, still good news. I have been sick with a cold so hadn't been back to the hospital for two days and so I have spent my time convincing myself that somehow I got the details wrong, scouring the Internet for cases of this happening and not finding them (just goes to show how uncommon this really is!). But alas, all is well. I had the conversation again, this time with another doctor and confirmed that the brain matter was all there, intact. She tried to explain to me what "might" have happened but I basically zoned out. I did manage to remain speaking this time, but somewhat lost my ability to hear anything after she said "Yes, I saw Asher's ultrasound, what great news!". Anyway, as we said before this doesn't mean that he is 100% spared from potential impairments, but things are looking very, very good. Hallllllllelujah!

I realize I haven't given many other updates lately but that's a good thing because it means not much has changed. Both boys are slowly tolerating bottles, attempting 2 per day. Our NICU has a very good system where they slowly progress babies on oral feeds in order to not tire them out and set them back. So once they successfully take 2 bottles a day for a few days, they'll move on to 3, then 4, and so on, until they're at full feeds. Breastfeeding will be mixed in there (in place of a bottle) whenever I am able to be there.

Both boys are now back on low flow prongs but this is not disheartening because they are on such low amounts of oxygen it is almost as if they just need the security of having something blowing up their noses. Because they are still nowhere near coming home, no one is concerned and trying to push them to get off. Essentially they are on the absolute lowest amount of oxygen they can be on without just breathing like you and me, so we'll take it!

Nolan is up to 5 lbs 12 oz and Asher is 5 lbs 4 oz and they are fairly consistently gaining an ounce a day.  So now we just wait for them to suck, swallow, breathe all at the same time (who knew how hard it was) and they're homeward bound - we're still banking on the end of February so fingers crossed!

Oh and thanks to everyone for all your comments and emails about our good news! We really appreciate hearing from you!

In a word: Miracle

I am pre-warning you to bear with my rambling. Between happy tears and being speechless, I don't quite now how to put today into words.

Asher and Nolan both had repeat head ultrasounds today. We weren't worried about Nolan because his has been normal all along, but I was nervous about Asher's because he is now old enough that most of the blood should have reabsorbed and we would be able to see the damage the bleeding caused. But before I go on, let me give you a reminder of the anatomy of a brain bleed, or intraventricular hemorrhage (IVH).

IVHs are graded 1 through 4, with 4 being the worst. Grade 1 and 2 bleeds generally don't cause any damage because the bleeding is contained within the ventricle. Grade 3 starts getting more scary because the blood completely fills the ventricle, and Grade 4 is the worst because the blood has spilled over into the actual brain matter. When a Grade 4 bleed reabsorbs there is a pocket where brain matter used to be. Essentially, a big hole where the blood killed the tissue.

When we were given the initial diagnosis of Asher's left side Grade 2 and right side Grade 4 IVH it was devastating. The Grade 2 was barely mentioned but the Grade 4 was essentially sentencing him to some sort of brain damage with the extent unknown. All we have prayed for is that somehow his premature and very plastic brain would learn to re-route around the damage and leave him with minimal, if any disability.

Needless to say, it was scary to find out what the result was today. I bugged the neonatologist a couple of times but didn't push too hard because part of me didn't actually want to know. Late in the day I heard him mumble to himself about going to check if the results were online and he came back a few minutes later and very stoically said "Both boys look good". Nolan was a given, so I moved right on to Asher. The scene went something like this:

Tracey: By good you mean the blood has reabsorbed?
Dr: Yes, the blood has reabsorbed....but also...there's no hole.
Tracey: What do you mean no hole?
Dr: Well generally I would expect to see black (emptiness) where the blood was. Except I didn't see black, I saw white matter.
Tracey: What? Various incomprehensible blubbering, crying, melting on the floor. You're kidding.
Dr: I'm not making this up.
Tracey: More blubbering; has to stop herself from hugging the doctor
Dr: Looks at Tracey, unsure of what to say next because of Tracey's ridiculous behaviour and apparent loss of english language skills


5 minutes pass and Tracey tries to pull herself together. Conversation resumes.

Tracey: So let me get this straight. The blood is gone and there's no hole? Is this normal?
Dr: I have seen it before, but no, it's definitely not the norm.
Tracey: So no damage whatsoever?
Dr: Well, we do have to wait and see how he progresses, but it looks good right now.
Tracey: So let me get this straight - there's NO blood.
Dr: There's a few clots left in the ventricle, but that's it.
Tracey: Enough to cause hydrocephalus? (fluid on the brain caused in this case by the draining blood blocking the ventricle)
Dr: No, he looks to be past that now too.
Tracey: More blubbering. Conversation between Tracey and Doctor ceases.


Enter Jordan. Tracey shares news. Blubbering continues. Tracey tells nurses. Hugs and talk of miracles abound.


So there you have it. If you didn't believe in miracles before, you should now, because I believe we are witnessing one. We by no means have a guarantee that Asher is going to be fine, but it is certainly looking like a much greater likelihood than we had ever imagined. Jordan and I are so stunned that we both feel like this is too good to be true and maybe the scan didn't get the right angle or maybe the doctors interpreted the results wrong or maybe I imagined the entire conversation. A large part of me feels that by sharing this news with all of you I am jinxing us. But maybe the reality of this is that the very difficult year we have been through has all lead us to this. If that is the case, then every second of pain/loss/anger/worry/(insert other negative emotion here) that Jordan and I have felt has been worth it, a thousand fold.

Thank you, thank you, thank you, to each and every one of you who prayed endless prayers and sent endless positive thoughts. Someone or something bigger than us was listening and some special guardian angels have been working very hard. All that being said, the boys aren't completely out of the woods yet, so please, continue whatever it is you have been doing because clearly it is working!

And with that Tracey is sobbing and exits to get a glass of wine.

The things we've missed out on

For a few weeks now, I've been thinking about doing a post about all the things we've missed out on because of the premature birth. I have hesitated, partly because I'm too tired to report anything but the facts, and partly because I generally try to keep things positive and not wallow in self pity. But last night when I went to the Labour and Delivery waiting room to get a glass of water I saw a set of thrilled grandparents happily awaiting the arrival of their newest family member, and I was taken aback by emotion. So here are some of the things that we have missed out on through this crazy experience. Clearly, the babies' health is the most important item on that list, but I've been posting about that one for months, so here's a few of the more trivial (yet clearly not trivial to me) items:

1. A term twin pregnancy. I wanted to see what I looked like pregnant with twins. I wanted everyone else to see what I looked like pregnant with twins. I was ok with getting fat and waddly and gaining 50 lbs, not being fairly small and flat in bed with pajamas and bad hair.

2. Happy contractions. Ok, contractions never feel good, but when you start having contractions and/or your water breaks and you know "this is it!" that should be a happy feeling. Not fear of the worst, wishing there was something, anything, you could do to keep them in longer

3. A calm delivery. I, like most other moms, did not want a c-section. A "normal" c-section I would take however, compared to being rushed to the OR in a state of utter chaos. Realizing that my pain and fear and well being were really last on everyone's priority list (including my own) was frightening. And then there's those minutes I laid awake before I was put under, while they frantically prepared for the boys' arrival and I contemplated their future - I shudder at the thought.

4. A delivery with dad present. In addition to my own mental and physical state, I was distraught about the fact that Jordan was not with me.  I was in complete terror and all I could think was that he was not going to be there to witness his sons being born. I can't even imagine what he was thinking knowing what the boys and I were going through and he was not allowed to be there to hold my hand and see for himself what was happening. Each of us went through the worst minutes of our lives, alone.

5. A happy waiting room, as mentioned before. Unlike those grandparents I saw last night, I had terrified family members awaiting news that they weren't supposed to hear for months.

6. Meeting the babies. A dad should not have to meet his children for the first time seeing them rushed down the hallway, surrounded by medical staff, being bagged. He should watch them take their first breath, hear them cry, and then cut the cord. And a mom should not have to see her children through glass, hours after they are born, wheeled into the NICU on a stretcher in a daze of anaesthesia and morphine.

7. Elated phonecalls to friends and family. Communicating the news that our kids were 3.5 months early and gravely ill was not something Jordan could have enjoyed. Receiving that news was not something I can imagine any of you enjoyed either.

8. Breastfeeding. Pumping does NOT equal breastfeeding. Pumping sucks more than you can imagine. I despise the pump and can't wait till I can feed the boys the way I was meant to.

... you get the drift.

I could go on, but I'm not going to. Enough wallowing. The harder thing is that accompanied with all those feelings of being ripped off, there are feelings of guilt that I should NOT be thinking of this stuff and should only be concentrating on the boys and the hell they're going through, not my own. But you know what, I think I'm pretty normal to feel this, and really at the end of the day who is going to remember this period clearly? The boys? Thankfully NO. Us. Jordan and I have to live with these memories forever, and while I'm sure they'll fade, I'm also sure I'll spend the rest of my life with constant reminders of this scary time. So for that, I'm allowed to feel sorry for myself.

Big breath. That felt good.

PS - the boys are hanging tight. Asher is back on prongs, but prongs are ok. They're not CPAP, that's all I care!

Wow x2

Well since Nolan got the mad props yesterday, Asher deserves them today. Nolan is still going strong breathing room air, and Asher is right behind him. At 11am Asher was taken off CPAP and at 1:20 he was taken off the prongs. Another good day.

Dad and bare faced boys

Wow

At noon today, Nolan was taken off CPAP and put on low flow prongs. At 1:20 was doing so well he was taken off prongs and started breathing room air. As of 9pm, he was still going strong with no assistance. I stared at my little man in absolute amazement today, realizing that the switch has finally turned on and he knows how to breathe. All on his own. This may not last, but as long as it does we will enjoy it. Whatever happens tomorrow, this is huge.

"Look at me - apparatus free! I'm so coordinated I can even breathe while sucking this soother that's almost as big as my face!"

More on the lungs

As suspected, Asher was put back on CPAP in the wee hours of the night I last updated. Poor little guy was just struggling and needed to be bagged 3 times on night shift so they said enough is enough.  The good news though, is that the return to CPAP was apparently the final push the doctor needed to concede to giving Asher what we and the nurses felt was a much needed blood transfusion. Asher's hemoglobin was very low as of last bloodwork although the doctors did not feel it was low enough to transfuse. In addition to being yellow from the jaundice he was so incredibly pale and did not look well, but this didn't seem to cause alarm to the higher powers, only those of us that stare at him all day. Apparently, at this point a baby should be starting to make their own red blood cells, so transfusing puts a halt to that process and tells the body that they can get those cells elsewhere (the transfusion) and therefore they stop producing. But because of the return to CPAP it was apparent Asher needed some help and therefore the benefits outweighed the risk.

I returned last night and could not believe the difference in Asher. It had not been long enough for the blood to change his behaviour, but his colour - oh my! He was the most beautiful shade of pink and made Nolan look down right pale compared to him. Hopefully this is the last  little push he needs.

Nolan is doing very well now that he is back on CPAP. Last night I got to give him a bath! Previously, I had been "taught" to give a bath to Asher, but mostly just observed. Last night it was all me with Nolan. As a first time mom with Rio, I was always amazed by my own confidence bathing her, but with these mini little squirmers, it's terrifying. When I was done with Nolan (it was actually easy peasy) and the nurse said "ok, go ahead and put him back" I froze in terror. "In the crib? Wet and slippery? You want me to carry him back to the crib?!!!" Well needless to say, I did, and it was all of 1 step, but it was the most frightening step I have ever taken! We all survived though, and Nolan seemed to thrive on the physical care from mom. As often as we can, we will start trying to be there for bath time in the evening now that we get to have such a big role.

As for CPAP plans we don't know exactly what is happening today but we have some very good nurses (who are not afraid to voice their opinions) who want to strongly advocate for the boys and us, and tell the doctors they are NOT ready to be pushed so hard. We are hoping that they each have at least another day or two of rest, but if not, they're suggesting that they cycle on and off CPAP and the prongs for the next few days because clearly the cold turkey method doesn't work for these guys. So we'll see and keep you updated as they progress.

Beating the Odds

I have been reading a great preemie book (thanks Julz if you're reading this!) and I am finding it really helpful. Any time I start looking at stuff on the Internet I am so overwhelmed and don't know what is worst case scenario versus the likely scenario. Reading this book has also brought to light some interesting stats about Asher's bleed which I thought I would point out. But first, let me start from the beginning and explain why I think we have spent the past year of hell beating the odds. Hopefully I don't lose you with the math.

It all began with our loss last year. The likelihood of two healthy parents with no kidney problems producing a baby with no kidneys is 1 in 5000. The likelihood of having a baby girl with no kidneys is roughly 1 in 35,000. Whoa. We should have bought a lottery ticket right there.

Then there's twins. Not saying that wasn't happy news, but it's pretty crazy news. 1 in 30 pregnancies is twins. Not really that astounding because a lot of those are with the help of fertility. But 1 in 250 pregnancies is identical twins which are usually just completely random freaks of nature (sorry boys, but you really are little freaks aren't you?)

So now we have Asher and his bleed. Pretty much all babies who suffer the severe blood pressure and pH issues Asher had at birth have bleeds, so we couldn't really escape that one. But only 10% of babies born at their gestation have Grade 4 (the worst) bleeds. We just had to squeak into that 10% because clearly, we have a bad history of falling into the tiny categories that almost all other babies do not fall into.

But now here's the good news. Of those babies that have Grade 4 bleeds, 50% of them die. Asher did not. Of those that survive, 85-100% develop hydrocephalus (fluid on the brain). Again, somehow, Asher did not.

So maybe the odds are changing in our favour?! I have repeatedly asked myself why, when I never have any luck with lotteries, raffles, 50/50s or any good gambling, I have all the "luck" when it comes to the problems that can arise in childbearing. I truly think that was all practice to get us used to beating the odds now that Asher's health and quality of life lie in the balance.

As for his long term prognosis, 25% of the surviving babies with Grade 4 bleeds walk away with no complications. None. Why can't that be him? Why won't that be him? It can, and it should. And even of the remaining 75% with complications - some of those must be minor right? So if not no complications, then minor. It has to be that way.

He is going to beat the odds. For the good. Full stop.

Breathing Update

Well things have been better for the boys. Most definitely they have been much, much worse, but of course whenever things start to be going well and we think "this is finally it" they take a nose dive.

Both boys have been trying low flow prongs off and on. Nolan, after his third attempt, is back on CPAP yet again. This last time I was quite disappointed because we thought he was ready. And to make it worse, each of the three times they've tried he's lasted less time than the attempt before. However, the doctor has decided he should have the weekend off to rest up and they won't try him again until at least Monday (phew!). Since his return to CPAP yesterday he has been much more stable so we are thankful for that.

Asher is struggling, but still hanging on to the prongs. They changed his from low flow to high flow, which means he is getting more pressure but hasn't had to resort to CPAP just yet. At the rate he is going with all his apneas and bradys, he is surely heading there though.

The doctors believe that because they are 36 weeks they should be ready for to breathe on their own. Yes, apparently they should but they are not. Then throw in the fact that things all started going south on the day they got their immunizations, and that must count for some less than ideal behaviour.

To add to Asher's troubles, he's now jaundiced and a lovely shade of yellowy-beige. I noticed for the first time when I held them together, but now that they are in a crib together it is very obvious that Nolan is a much healthier pink. At first I thought it was just because Asher is so much smaller and as such a bit sicklier looking but when I mentioned it to the doctor he decided to test his liver function just in case. Sure enough, high bilirubin. Thankfully this is not something Asher feels or notices, so they'll keep a close eye on it and are proceeding on the assumption it will work itself out. I did read today however, that high bilirubin is common in babies with severe bleeds when they are breaking the blood down. So maybe we should look at it like a good thing that his body is finally processing the extra blood from his brain.

Finally, and probably most bothersome to Asher, is his issue with water retention. He has always been slightly puffy but now in the past couple of days he's started to hold a lot of water in his....well, to put it politely....nether regions. Sorry if this is too much information, but the whole area is swollen. Who knew a penis (amongst other anatomy) could retain water? Not a sight I ever wanted to see.  Anyway, they've decided to give him a diuretic, hoping this will help, but of course the downfall to that is that he's going to lose weight and he's already tiny enough as it is (4 lbs 7 vs. hulky Nolan at 5lbs!)

So all of these "little" things are surely adding up and causing Asher much distress. If he ends up back on CPAP I'm sure it's all for good reason but this constant back and forth is so disheartening to all of us.
Hopefully they both get over this hurdle quickly and then it's back to positive breathing results and continued attempts at feeding. All 5 of us are getting very tired...

The Photoshoot

On Monday, the day the boys were first tried on prongs together, we had a photographer come to the hospital and take some pictures. Michelle* is someone Jordan and I have both known through friends over the years and when she heard we had Asher and Nolan she contacted us through my sister to offer to come to the hospital. Michelle understands only too well what we are going through. She and her husband are the parents of now healthy, beautiful, 7 year old twins who were born at 27 weeks and also spent weeks in the VGH NICU.

As you can see from a few choice photos that we are sharing (we're being selfish and keeping most of them to ourselves for now), we were blown away by the results. The beauty that she found in that setting, through the doors of the isolette no less, is astounding.

Nolan

Asher

Enamored parents

Nolan

Asher

Dad and Asher

Thank you Michelle, from the bottom of our hearts. You have given us, and Asher and Nolan, some real keepsakes to treasure.

*www.michelleloewen.com

More Big Steps

Another great day today. First of all, there's this - sleeping beauties in bed together.

The nurse last night decided that since they were now dressed in clothes and had been good at maintaining their own temperatures, it was time to say farewell to the isolettes. Not only does this mean they are permanently back together as they should be, we have a lot easier access to them. Taking them out for a cuddle is no longer the big production it once was!

Equally as exciting, Asher tried to breast feed this afternoon. Really it was more of a practice than anything but we were very pleased with his attempt. I got to hold both boys and give them their tube feeds and am hoping that tomorrow I can be there for both a breast feed and a bottle feed for Asher. If Nolan finally makes it on low flow prongs tomorrow (in a planned 3rd attempt) I will try to bottle feed him too. He doesn't suck as vigorously on his soother as Asher (who seriously looks like Maggie Simpson) but he does like it, so hopefully he will take to the bottle easily too.

Our nurse today told us that the doctor is astounded by Asher's progress of late. "This is the one with the bleed? The one that had all the problems? He's bottle feeding and the first on prongs?" Yup, that's him, and yes, he's incredible. Not to take away from Nolan, who is incredible in his own right. Skinny little Asher (4 lbs 3) has had his milk intake increased in an attempt to help him catch up to his monstrous brother (4 lbs 11) so Nolan is definitely doing something right in the weight gain department, especially considering he started as the smaller of the two.

Tomorrow they are 36 weeks gestation. Contrary to popular belief, 36 weeks is actually considered full term so no more excuses for poor behaviour, you're big boys now!  With the progress they have made over the past few days we finally feel like they are coming home. Not any time in the next days, weeks, or  even month, but FINALLY the end, no matter how far away it still is, is in sight. Happy almost 36 weeks boys, we couldn't be more proud of you.

Getting there

The nasal prong test is going ok. Nolan, as we suspected, was not quite ready yet and they put him back on CPAP today at 2pm, about 25 hours after he started. Asher was still going though - going strong might be an overstatement, but we'll see how it goes. They have upped both of their dosages of caffeine to stimulate their respiratory drive so hopefully next try it will stick for both of them.

In a huge step, Asher took a bottle today! He was very vigorous at feed time this morning so they decided to try and he did very well. As long as he remains on prongs they will try him on one bottle per day and slowly increase that as he tolerates. At the same time we will slowly introduce breastfeeding so they will organize his breast/bottle feeds around when I can be there.

One of our primary nurses was on today, and she decided that these boys were way too old to lie around naked anymore, so here they are cute as can be in their first outfits.

Nolan

Asher

Nasal Prongs

Now that the boys have moved to their new home in level 2 they are being treated as level 2 babies, and as such they want them off CPAP. Three days ago they decided it was Nolan's turn to try low flow nasal prongs, with a rate varying anywhere between 20 and 140 mL of flow - a HUGE change from the 9 litres of CPAP pressure he was used to. Long story short, 34 hours and too many bradys later (including one horrific episode that resulted in him turning blue and requiring bagging while I was holding him) he was put back on CPAP. But 34 hours! He went from having major amounts of breathing support on CPAP to practically nothing on low flow, and he made it a day and a half. Well no rest for the wicked apparently, because as of yesterday (plans can always change last minute) the plan was to try them both again today, so we'll see how that goes. I am worried Nolan has not had enough of a rest, but what do I know, I am not the specialist.

So please send lots of positive energy today as we are really hoping for them to take this next big step and get off CPAP for good. Because after CPAP comes co-bedding in a crib...then feeding from a bottle...then breastfeeding...then h...o...m...e...c...o...m...i...n...g...