Two Months Old

The babies are now two months old, and boy have they grown.  So much has happened in the past little while - good and bad - that I think our heads are spinning a little bit.

Some updates (in point form, because my brain is too mushy for fully formed paragraphs):

- Reid is back on high flow and doing pretty well (when he stops trying to pull the prongs out of his nose at least).  He's giving cycling a little go, which is when he takes a break from breathing assistance for a few hours at a time.  In Reid's usual style, he's taking his own sweet time adjusting to this, which as far as I'm concerned is completely fine.  Slowly, but surely...

- Madeleine and Reid are both done with their incubators and have moved into cribs!  This is a very exciting update, as it means they are capable of regulating their own temperatures without the help of the incubator.  It also means they are wearing clothes, which is super adorable.  Seeing the twins in clothes and cribs makes them look more like 'normal' babies than they ever have before.  So great.

- Madeleine is back to her old room next to Reid's, which is great news for Matt and I!  It was absolutely awful having the babies in separate hospitals, but still a bit frustrating when Madeleine came back to Sunnybrook and had to stay in a different pod than her brother.  It is so, so, so much easier to have them back in adjoining rooms with a door between them that we can leave open.  Makes it much easier to feel like we are spending a fair amount of time with both babies when we visit.

- Things are still up and down with Madeleine's head.  Her MRI didn't look great, but thankfully Sick Kids decided that it wasn't bad enough to send her back just yet.  Her ultrasounds have been increased to bi-weekly (which means bi-weekly anxiety attacks for mom and dad).  She has had two ultrasounds since the MRI, and the results have suggested that maybe things aren't super bad just yet, but also not super great.  Still holding our breath for some good news.

- Matt's car accident has meant that we are (hopefully temporarily) a one-car family.  It has made things even crazier for us, but the one good thing has been that Matt had the chance to spend last week with the babies since he was unable to work.  It was kangaroo cuddle galore!  We've seen in the past how much those cuddles can help (Reid especially seemed to respond to them), so I can only hope that somehow it will work some magic on Madeleine's ventricles as well.

- Now that Madeleine is breathing on her own and doing great, we were able to try breastfeeding!  I wasn't at all sure how that was going to go, but she did really well.  I have heard that teaching a prem to breastfeed is a long and arduous process, but I am still looking forward to it (at the very least, I'll be happy to spend a little bit less time with that pump!).  Since Reid is still on high-flow, he can't clock any boob time just yet, which is a little bit sad as he roots like crazy when you hold him.  He's even tried to suction himself onto Matt's chest while they cuddle, which must have been rather disappointing...

- Not exactly baby-related, but Penny and Rosie will be coming home mid-March.  They've been living up in Orillia having what I'm sure has been the time of their lives while we deal with all the stuff happening with the twins, but it's time to think about getting them back and adjusted to our new family life.  I am a little nervous about how this will go, since there's still so much that has to happen before the babies can come home and our life will settle down in that way, but then of course we will also have to figure out how to have two babies and two dogs at home full time.  Madness!  (But we still can't wait for it to happen and have our whole family under one roof)

- The babies are growing like weeds!  Madeleine now weighs 4lbs 11oz, and Reid weighs just over 5lbs.

[caption id="attachment_504" align="aligncenter" width="478"] Five pounds![/caption]

[caption id="attachment_506" align="aligncenter" width="482"] This is her sweet face.[/caption]

[caption id="attachment_507" align="aligncenter" width="480"] Wearing clothes. Like a boss.[/caption]

[caption id="attachment_508" align="aligncenter" width="482"] Yeah, strawberry hat![/caption]

[caption id="attachment_510" align="aligncenter" width="480"] Hanging out, having a bath...[/caption]

 

Momento

Bad News/Good News

Bad News:  Madeleine's most recent head ultrasound showed that she has developed a new bleed in one of her ventricles and in part of her brain tissue.  Possibly a result of the shunt surgery, possibly a result of the pressure change in the blood vessels now that the swelling is going down.  Not quite sure what this all means yet, but Madeleine had an MRI this morning and we should find out the results tomorrow.  Very sad and frustrating.

Good News:  Madeleine no longer needs any assistance to breathe.  This was a big shock, since she had only recently transitioned on high-flow oxygen (oxygen plus pressure, but less pressure than CPAP).  I assumed she'd still need to be on high flow for a while, but Madeleine had other ideas and let everyone know that she was so over the breathing machines.  Can't believe my little girl is breathing like a normal baby now.

Good News:  Reid also decided to ditch his CPAP and give high-flow a try.

Bad News:  He only lasted a few hours.  I felt so bad for Reid when the respiratory therapist decided it was time to put his CPAP helmet back on - Reid is so big now (4lbs 9oz) that he gets very frustrated having all that equipment on his head.  It's pretty clear that he really wants to be done with CPAP, but for now, he still needs a little extra help.

Good News Best Ever News:  We were finally able to get the twins together for a cuddle!  We knew all along that this could only happen once at least one baby was off their breathing apparatus, so once I heard that Madeleine was breathing on her own, I knew we had to try and make it happen.  Even though Matt and I had always been looking forward to the day we could have both babies together, it was obvious that neither of us was quite ready for it.  Having the babies in different rooms had somehow made it feel like we only really ever had one baby - we've only really ever had to think about or care for one baby at a time.  Holding them both made it sink in that there really are two of them, and we really will have two babies at all times for the rest of our lives.

As excited as we were to hold both babies at once, we were equally as excited to see how they would react to each other.  Up until two months ago, Reid and Madeleine had spent all their time cramped up against each other in my belly.  At the same time, and unlike most twins, they had also spent the last eight weeks completely separated.  I guess Reid didn't exactly mind the alone time though, as the first thing he did when his sister came in the room was turn his head away!  Madeleine promptly grabbed a hold of Reid's hand once we snuggled her in with us though, which we'd like to consider was a deliberate sign of love and goodwill towards her brother (though it was probably much more a product of her infant reflexes).  That was pretty much the end of their interaction however, as both babies promptly conked out for the next hour before we had to put them back in their beds.

Getting Older

Apparently, my babies are getting older.  We are aware of this, of course, but I feel like it has suddenly become A Thing.  For example, my precious little boy is starting formula today ("He's getting older!" says the nurse.  "Can't stay on donor milk forever!").  They're considering transitioning him to high-flow oxygen ("He's getting older!  Can't send him home on CPAP!").  Both babies have started crying and thrashing around, frustrated in their incubators ("They're getting older!  They're not just going to lie there and sleep all day!").  While this means that we're getting closer to taking these two home, having it suddenly happen in the blink of an eye one day makes for one shocked mama.

One way I have irrationally attempted to cope with this development is by attempting to spend my days pumping fast and furious like a crazy lady.  "NO BABY OF MINE WILL HAVE FORMULA!" I proclaim in my head.  But of course, both of my babies will most definitely end up on a fairly substantial amount of formula if I want them to eat and grow and live.  And, despite all the encouragement from our lactation consultants, I am fairly sure that by this point in my (older!) babies' lives, there isn't a whole lot I can do about my pathetic milk supply, but that doesn't stop me from trying to stop the process of my little ones growing faster than I am prepared for.

Of particular concern is the frustrated thrashing.  I have tried my best to mentally prepare myself for having two babies at home that cry and scream and freak out like babies do, but I guess I assumed that wouldn't happen until I, you know, took them home.  I see it already beginning though, as both Madeleine and Reid will wake up suddenly to realize that something is wrong, and cry and thrash in the hopes that that something will resolve.  Unfortunately, I happen to have no idea what that something is, so I just sit there feeling useless until they figure out a way to settle themselves.  In my imaginary 'two babies at home' mental scenario, I would  try to do something helpful like pick them up and give them a cuddle, but you can't really do that when your baby lives in a little plastic box.  So instead I just sit there and try to offer them some unhelpful reassuring words while watching their heart rates climb on the monitor because, c'mon Mom, do something already.

In any case, I am still aware that being here with my already-seven-week-and-change babies is a big accomplishment.  Reid is well over 4lbs now, and both babies are finally starting to pack on some fat rolls which are so wonderful to see.  And even though it hurts me when they cry, their cries now are actually starting to sound like real baby cries instead of sad little lamb cries.  I know that not all mamas get to see their babies grow when they were born at only 25 weeks, and that it was never guaranteed to us either.    At the same time, with still so many weeks of NICU life ahead of us, it will be a challenge to to watch Madeleine and Reid continue to get bigger and stronger while still being stuck in incubators and attached to machines.

Surgery Number One

Hard to believe it's only been a week since my last post, because boy has that week been eventful.  Having Madeleine at Sick Kids has been very challenging for a number of reasons - another hospital visit to cram into the day, more travel time, a completely different facility with completely different ways of doing things that we don't always feel comfortable with, generally feeling out of the loop when it comes to Madeleine's care and having to walk the line of being an advocate while not being pushy.  But mostly the hard part was that she needed surgery, and will probably need another one in a few weeks time.

The neurosurgery team here saw Madeleine's MRI results and decided that she most definitely needed a shunt in order to relieve the pressure and swelling in her ventricles that has resulted from the blocked flow of fluid.  We knew of course that this was happening based on her head circumference measurements and her weekly ultrasounds, but until we got to Sick Kids I didn't know just how bad it was.  They went ahead and placed a temporary subgaleal shunt in Madeleine's head to start the process of draining the fluid, and will they likely also have to insert a permanent shunt in a few weeks once Madeleine has had a chance to gain more weight and put on some more subcutaneous fat.

We are a few days out from surgery now, and Madeleine is doing okay.  She is still ventilated, and was initially having trouble tolerating her feeds, but is now back to her full amount every two hours with only small amounts coming back up, and she should be extubated soon.   The other issue of concern is what this will all mean for Madeleine's long-term brain development, but since it is pretty much completely impossible to gauge that right now (or anytime soon, for that matter), we're doing our best to push that worry aside.  Yesterday she was given the green light from neurosurgery to be transferred back to Sunnybrook, and we are hoping she will be discharged soon.

Even though Madeleine's brain has become the more pressing priority as of late, we have still been visiting Reid as much as we can, and he has been getting lots of cuddles.  This is important to note because, does that boy ever like to be cuddled!!!!  Since his lungs are not as strong as Madeleine's (and also perhaps because he had the issue with his murmur), he has a tendency to struggle a little more with keeping his heart rate and oxygen saturation steady.  Take that boy out for a cuddle though, and he does so well!  It is so wonderful to know that something we absolutely love getting the chance to do is also something that makes him so much happier and stronger.  (Note to Reid:  please maintain this preference forever and ever ok thanks.)

This past week was definitely one of the toughest we've had since the babies were born, but now that Madeleine's surgery is complete and both babies are doing fairly well, it feels like we can breathe a little easier again.  I am definitely starting to understand well why they call the NICU experience a rollercoaster ride.

[caption id="attachment_454" align="aligncenter" width="611"] Madeleine, pre-surgery.  Small, but mighty (and also super cute).[/caption]

[caption id="attachment_455" align="aligncenter" width="609"] Reid showing off his breathing skills and his big blue eyes[/caption]